The Nathaniel Centre

[Synopsis only] Disability in the Catholic Intellectual Tradition since the Second Vatican Council

Zach Duke examines how disability was perceived in Catholic thinking prior to and after the Second Vatican Council. This piece highlights St Thomas Aquinas’ reflection; a creature by its very existence gives glory to God.  More recent reflections on the ‘dignity’ of all human persons provide a theoretical framework for all persons, including those living with a disability, to be welcomed and respected unconditionally. Pope Francis’ openness and comfort in the presence of those with disabilities shows how the rhetoric of earlier times can be lived out in practice.

The full article is available by subscription to The Nathaniel Report

Organ Donation and Catholic Teaching: A Summary

Staff of The Nathaniel Centre

Catholic teaching on organ and tissue donation and transplantation speaks of it as a form of "self-giving", a selfless act of love modelled on Jesus Christ's unselfish offering of his own life. Thus, the donation of human tissue and organs is often referred to as an "enduring gift".

No one should ever presume such a gift – the decision to donate organs or tissue must always be explicit, free and informed. Provoked by love, and freely offered, an act of tissue or organ donation can be seen as a rich gesture of generosity, an expression of human solidarity that serves the common good. It is, in other words, an intensely personal act and, as such, should only ever be done with the explicit consent of a person.

As Pope Saint John Paul II noted in Dolentium Hominum (1991): “… the human body is always a personal body, the body of a person. The body cannot be treated as a merely physical or biological entity, nor can its organs and tissues ever be used as items for sale or exchange. Such a reductive materialist conception would lead to a merely instrumental use of the body, and therefore of the person.”

We acknowledge the need for, and benefits of, increasing the relatively low rates of deceased organ donation in New Zealand. However, the view of organ donation as a ‘gift’ means that it is not something that anyone should feel obliged to do or be pressured into.

For this reason, we reject any purely ‘utilitarian’ approaches to increasing the rates of donation that focus narrowly on raising numbers and that fail, intentionally or otherwise, to acknowledge the importance of the process. The process surrounding the donation of organs should be driven by a holistic understanding that respects the dying patient as a person – a person who is at the same time part of a family with its own needs and specific cultural dynamics – while upholding the dynamic of giving.   

‘Opt-out’ models of consenting to organ donation (which are based on the notion of presumed consent) fail, in our view, to uphold the dynamic of genuine, intentional and consensual giving that marks out organ donation as an intensely personal and generous act.

While acknowledging that the process of being an organ donor makes significant demands on a person’s family and friends at a time of intense grief, and while also acknowledging that the family need to remain closely involved, the principle of respect for the dignity of a person implies that their expressed wishes as to what happens with their body after death should be upheld. This principle should only be departed from in exceptional cases.

Meanwhile, application of the principle of justice requires that “the criteria for donated organs should in no way be 'discriminatory' (i.e., based on age, sex, race, religion, social standing, etc.) or 'utilitarian' (i.e. based on work capacity, social usefulness, etc.). Instead, in determining who should have precedence in receiving an organ, judgements should be made on the basis of immunological and clinical factors. Any other criterion would prove wholly arbitrary and subjective, and would fail to recognize the intrinsic value of each human person as such, a value that is independent of any external circumstances.” (Pope Saint John Paul II: Address to the 18th International Congress of the Transplantation Society).

For further reading see the following articles available at: www.nathaniel.org.nz

“Organ donation - An Enduring Gift” by Michael McCabe. Nathaniel Report, Issue 12, April 2004.

“Making a Life-Saving Difference: Organ Donation and Consent” by John Kleinsman. Nathaniel Report, Issue 13, August 2004.

Nathaniel Centre Submission on Human Tissue (Organ Donation) Amendment Bill. Nathaniel Report, Issue 19, July 2006.

“Organ and Tissue Transplantation and the Catholic Moral Tradition: A Case Study in the Evolution of Moral Teaching” by John Kleinsman. Nathaniel Report, Issue 19, August 2006.

Kidney Transplantation: A New Zealand Perspective

Tony Stephens

This article has come about in response to a request to The Nathaniel Centre for information about the processes and ethical issues surrounding kidney transplantation. When we approached the Donor Liaison Coordinator in the Renal Department at Capital and Coast DHB for updated information about kidney donation, he agreed to provide the following piece which describes the practices involved. There are currently about 700 people in New Zealand on waiting lists for a kidney transplant.

Organ transplantation is a life-saving and life-enhancing therapy for many people. In New Zealand the heart, heart valves, lungs, liver, pancreas, kidneys, corneas and skin can all be transplanted.¹

While most donated organs come from deceased people, live donors can give one of their kidneys or part of their liver to someone in need.

A transplant kidney allows the recipient to lead a relatively normal life. While they must take anti-rejection medications for the rest of their life, this is easier to fit into normal life than dialysis.

In New Zealand over 91 percent of kidney transplants are working after one year with over 82 percent still working five years after surgery.² Some transplants have lasted for over 30 years.

Deceased Organ Donation

In some countries - including New Zealand - a person or family must make a conscious decision to be an organ donor after death. This can be done by stating ‘donor’ on our driver’s license but, most importantly, by informing our families of our wishes. This approach is known as ‘opt-in’.

If you are in a non-survivable condition in an Intensive Care Unit (ICU) your family will be asked to consider giving permission for organ donation after death. If you want to be an organ donor, your family is much more likely to agree if they know in advance. Therefore, it is essential that you inform your family of your wishes to be an organ donor or not.

An ‘opt-out’ system is the opposite; a person and family must make a conscious decision not to be an organ donor. In the absence of a decision to opt-out it is assumed they have given consent to be an organ donor. In such cases, family members are also assumed to have given consent for organs to be removed from their loved one. An individual or family may not feel completely comfortable about being a donor but may feel that the pressure of society to donate compels them to be a donor.

Intensive Care

Over recent years, in an attempt to improve donation rates in New Zealand, there has been a focus on training ICU doctors and nurses to better identify potential donors and then sensitively raise the question with family members.

Unfortunately, some people mistakenly believe a patient may be treated less well in ICU because of the focus on their organs rather than their recovery. This is not true.

One of the most important issues addressed by ICU staff during family discussions is that the care of the patient will not be compromised, whether organ donation has been agreed or not.

The ICU and transplant teams are separate entities. The ICU team focuses on treating the patient, and someone who is going to donate organs after death is treated the same as anyone else with all possible steps taken to improve their condition.

While the transplant team is informed when there may be a potential donor dying in the near future, this team is not involved with the patient’s care while they are still alive. The transplant team performs its roles with deep respect, sensitivity and gratitude to the person and their family.

The doctors of potential recipients are also not involved in the care of someone dying in ICU, and are only informed of a potential organ donation late in the process. They do not go to the ICU to talk with family members or to influence the care and treatment the patient is receiving.

Sometimes families decline organ donation and often face criticism from the media. While it’s easy to criticize, we must remember that the family is in shock with their loved one dying in front of them. To then be faced with the decision to have organs removed can be overwhelming.

However, if the family knows that their loved one wishes to be a donor, it may be easier for them to agree to the organ donation. Conversely, if the family knows the person does not want to be an organ donor, they can express this clearly to the ICU staff who will respect and honour this wish.

Live Donation

A healthy person can donate a kidney to someone in need. Live donors are usually members of the recipient’s family, although friends are also often donors. Donors can also offer a kidney in an anonymous (non-directed) manner. In this case the best matching recipient from the waiting list is allocated the kidney from the non-directed donor.

Live donors go through an extremely vigorous testing process to help ensure they will be fit and healthy for the operation and for the rest of their lives. This testing process takes place over many months and involves many appointments with nurses, doctors, surgeons and psychologists. A live donor can withdraw from the process at any stage with the support of the renal team. Equally, at any stage they may be found unsuitable due to a health condition or concern about their future with one kidney.

There are risks involved in being a live kidney donor – risks associated with the surgery as well as a slightly higher chance of developing renal failure (due to having only one kidney). There is also a higher chance of developing high blood pressure later in life and the consequences this can have on the donor’s health and life expectancy. A younger donor will have a longer life ahead of them for possible complications to develop.³

In New Zealand, the minimum age to be an organ donor is 18. While all potential donors are asked why they want to donate, extra care is taken with young donors - an 18 year-old would be asked at each stage if this is what they really want to do and would undergo a psychological assessment to help determine their motivations and their mental state.

Due to the long-term risks of kidney donation, anyone with diabetes or hypertension is ruled out of being a donor. Other factors ruling out live kidney donation are obesity and major psychiatric issues.

Kidney donors are monitored by the renal service or their GP for the rest of their life to help ensure they stay healthy.

At times a live anonymous donor will specify that they would like to donate their kidney to a child, or a particular person (a celebrity for example) or to someone ‘who has looked after themselves.’ This is not an option as non-directed kidneys are allocated purely on a tissue-typing test. This test identifies the person on the waiting list who best matches the donor. This person is offered the kidney and, if they agree, a surgery date is arranged. If the recipient does not agree, the next person on the waiting list with the closest tissue match is offered the kidney.

Ranking by tissue-typing gives the donor kidney the best chance of working and of not being rejected by the recipient.

Safeguarding the Interests of live donors

The interests of the donor are safeguarded throughout the live kidney donation process. They have a different doctor to the recipient, enabling each doctor to focus on their particular patient without the possible conflict of interest, or pressure to help one over the other.

As the donor is seen by many health professionals throughout the process, there are many stages at which these professionals can determine whether organ donation is the right thing for a particular donor.. The healthcare team can also determine if the donor is being pressured, in which case a strategy can be formed to decline the donor in a way that keeps them safe from any possible family repercussions.

Coming forward as a potential live donor takes a great deal of courage. To go through surgery for no physical benefit is very brave. Potential donors do sometimes feel pressure to donate, not necessarily from their family but from within themselves. A person may feel they need to donate a kidney to their loved one, but also feel the need to look after their own family.

Overcoming these conflicting feelings is very difficult, and our advice for someone in this situation would be to not donate. Being a kidney donor requires single-minded determination and focus. If there is too much going on in the donor’s life it is likely to be too much for them to cope with.

Throughout the process, staff maintain the privacy of the donors’ information. At times a recipient will ask about how ‘their donor’ is getting on. Due to confidentiality reasons we cannot give information about the donor to the recipient. If a recipient wants information about the donor they will need to ask the donor.

Buying and Selling Organs

In some countries (such as India and Sri Lanka) some people sell their kidneys as a source of income. Invariably, these donors sell a kidney out of financial desperation and post-surgery are often treated poorly by the transplanting hospital.⁴ In New Zealand it is illegal to buy or sell organs for transplant. Nevertheless, this option is sometimes raised by people. In such cases, they are actively discouraged from going overseas to receive a kidney transplant. This is to try and reduce the demand in the organ market and to provide protection for donors who are driven by desperate circumstances to sell.⁵

Conclusion

Kidney transplantation is part of the wider treatment of kidney disease and offers a recipient the best chance of a better health outcome.

Kidney transplantation relies on brave and noble people to be donors – either after dying or as a live donor. Donors and their families are motivated by a strong desire to help someone in need.

For live donors, the desire to help someone and to improve the life of the recipient outweighs the short and long-term risks to their own health. Families of deceased donors often gain some comfort from the knowledge that the death of their loved one has given life to other people.

Tony Stephens is a Registered Nurse and works as Donor Liaison Coordinator in the Renal Department at Capital and Coast DHB.

Endnotes

1. http://www.donor.co.nz/facts-and-myths/faqs/
2. http://www.donor.co.nz/facts-and-myths/statistics/
3. Reese, P, Boudville, N, Garg, A. (2015). Living kidney donation: outcomes, ethics and uncertainty. The Lancet. Vol 385, May 16: 2003-13
4. Matas, A. (2012). Incentives for organ donation: proposed standards for an internationally acceptable system. American Journal of Transplantation. Vol 12(2): 306-12.
5. http://www.declarationofistanbul.org/

What ‘Artificial Intelligence’ can teach us about humanity

Lynne Bowyer and Deborah Stevens

The term ‘Artificial Intelligence’ (AI) was coined by the computer scientist John McCarthy in 1956. It is an area of computer science involved with the development of computer systems capable of performing tasks normally requiring aspects of human intellect. We are currently seeing exponential growth in AI, and this is due to a number of factors: the availability of faster hardware; the ability of computers to run more complex algorithms; the development of massive data sets; and the enormous monetary incentives involved with this technology.

Our lives are already permeated by a range of what has been called ‘Narrow AI’ applications. ‘Narrow AI’ is incorporated into many of the products and procedures that impact on our daily lives: automatic heat pumps; smart-phones; web-based searches; self-driving cars; complex assembly work in industrial processes; Facebook automatically labelling your friends in photos; Amazon and Netflix making personalised product and film recommendations. Already these ‘Narrow AI’ applications do calculative tasks faster than humans can, and are altering our world in significant ways. The increase in speed and capability of ‘Narrow AI’ has enabled increased flexibility within AI systems so that in many cases those systems are able to transfer what they ‘learn’ in one domain to another. For those working in the field, this is fuelling the idea that we can create what has been termed ‘Artificial General Intelligence’(AGI).

AGI technologies have been built that incorporate algorithms that mimic aspects and degrees of human cognitive function, including visual perception, speech recognition and means-ends decision-making. This field of research draws on experiments with ‘machine learning’ that utilise neural network technology. This technology creates simplified models of brain networks that can self-organise and solve problems. With such things as voice and image recognition, and faster computational power, it is envisaged that AGI will be as capable as any human across any ‘intellectual task’. This is said to include things like complex reasoning, thinking abstractly and learning from experience.

These claims and the impetus behind these developments give us pause for thought. They give us the opportunity to ask the questions: What is human intelligence? How is human intelligence developed? Can human intellect ever be simulated by a computer programme?

We argue that human intellect cannot be simulated by a computer programme, however complex that programme may become. This is because human intelligence is more than being able to access and process information in an abstract way and calculate means-ends decisions. Genuine human intelligence is embodied and embedded in a particular shared world and is concerned with making sense of our earthly existence in a way that enables us to enact the moves that enable all to flourish. Consequently, our human life-world will be dangerously eroded if the push for AI is allowed to continue unchecked.

We begin by discussing how a dominant paradigm of thought perpetuates the idea that human intelligence is all about abstract calculation and means-ends decision making. This framing supports the notion that more complex forms of ‘super-computation’ will enable the development of AGI. We argue that such a paradigm offers an attenuated understanding of human cognition that veils genuine human intelligence. We then attend to the way in which genuine human intellect is embodied and discursively formed within a community of others who are embedded in sustainable ways of life and who are responsive to the “slings and arrows of outrageous fortune”¹ that can derail us from time to time. At such times, our human intellect can hold us and others in being, in moments of existential uncertainly, enabling people to live well together.²

The dominant framing of human intellect

The philosopher Rene Descartes has exerted an enduring and pervasive influence on dominant western conceptions of human beings and their relation to the world.³ Descartes based his arguments on a metaphysical position that takes a reductive approach to seeking knowledge of things. This reductive approach isolates entities from their environmental context, strips them of all significance and pares them down into ‘component parts’. Descartes claimed that this process was thought to give us a sure and certain knowledge of things.

In relation to human beings, Descartes’ reductive approach opened up a chasm between the mind, the body and the world, and located the ‘human’ aspect of our Being in the mind. The mind, somehow associated with the brain, is said to be the locus of rational thought. On the Cartesian model, the ‘human’ is a fragmented and divided form of existence - human beings are a compound of a mind substance (res cogitans) and a body substance (res extensa), which somehow come together but need no other thing in order to exist. The mind, as the place of rational thought and language, is said to be an ontologically different substance from the body, and as the mind does not require the body, thought is essentially a disembodied process.⁴ To be human is to be a ‘thinking non-extended thing’ conscious of an ‘extended, non-thinking thing’, so that we are both subject and object.

The Cartesian framework sets each of us up in a private world of our own in which we establish “sure and certain knowledge” through the machinations of the rational mind. The mind, associated with the brain (and in subsequent theories that retain a Cartesian dualism, equated with the brain), is said to contain internal representations that correspond to an external reality. ‘Thinking’ is considered to be an isolated, inner process done in the mind/brain in terms of these representations and the way that they are manipulated. The ability to manipulate mental representations according to formal rules is said to be the ability to reason, and Descartes considered logic, especially mathematics, to be the quintessential form of human reasoning.⁵ As reasoning is considered to be a formal process, it is said to be universal: correct reasoning builds complex ideas out of simple ones in a way that anyone capable of applying the process can grasp. As rational beings – the archetypal animal rationale - Descartes’ epistemology claims that we are capable of expedient calculation through rigorous reflection on our ideas and mental operations. It is through this process that we can ‘know’ with absolute certainty that when we think, we exist…cogito sum.⁶ 

This particular approach to the framing of ‘humanity’ and ‘rationality’ forms the basis of many western practices and institutions, and it underpins the initial forays into AI and AGI.

Initial ventures into Artificial Intelligence

When human thinking is equated with the ability to calculate ‘rationally’, understood as the abstract manipulation of representations according to formal rules, one can see how those working in computer science developing ‘artificial intelligence’ envisage that we can create machines capable of surpassing humans in “all areas of reasoning”. However, when reasoning has been pared down to ‘instrumental reasoning’ or ‘calculative reasoning’, concerned with the most efficient means to a given end, meaning and significance are drained from the world.⁷ Friedrich Nietzsche was one of the first people to articulate this existential situation.⁸ He noticed that a reductive, instrumental rationality had come to dominate our approach to science, and this ‘scientific thinking’ was permeating all aspects of life. At the same time, other ways of thinking and the values and ideals they embrace, began to be seen as increasingly less ‘rational’. Over time, instrumental rationality has been increasingly adopted and normalised to the point where it has been unquestioningly and uncritically accepted. It has come to arrange and dominate all aspects of our lives, permeating our social institutions and creating bureaucratic spaces devoid of humane understanding. As a corollary, it shapes who we are and what we can do.

With ‘rationality’ unhinged from human meaning and significance, the need for ‘moral theories’ came to the fore, in order to work out the ‘right’ thing to do. Such theories, for example utilitarianism, emanate from the same impoverished mode of thinking that reduces intelligence to a calculation formula, whilst presenting it as a universal logic which it (falsely) claims is the same for everyone. In other words, instrumental reasoning has produced a way of inhabiting the world and relating to others that is hideously flawed, losing sight of the mystery and richness of what it means to be truly human.

We therefore need to pause and consider our human way of being and what has been effaced by the dominance of instrumental thinking. In so doing, we have cause to question both the approach and the outcomes of Cartesian claims, and the practices, including the development of AI and AGI, that push forward in their wake.

Our human way of being – embodied, embedded and discursively informed

When Descartes made his famous conclusion - cogito sum – he failed to ask about, or take into account, the I that thinks. For in order for any abstract, instrumental, reflective thinking to occur at all, there must be someone, somewhere, doing something that is pre-reflective; that is, there first of all has to be a self, engaged in a world of activity, who can then come to reflect upon that activity.

When we attend to the way in which human beings engage with the world, we see that human activity is first and foremost embodied activity, that is, discursively embedded in a world of human endeavours. The things we come to know are the things we come to do, and they are learnt over time through our interaction with significant others.

Our knowledge of things is through our involvement with them, and this knowledge is inscribed into our very being and it has an inexpressible aspect. For example, one can write down the rules involved with a game of football, along with explanations of player positions, the physics involved with every play of the ball, and the biomechanics of the player’s moves. But none of this grasps the way in which we learn to play football, the dispositions and qualities of character inculcated through training and participation, the reading of the nuanced bodily moves done by one’s own team and the opposition, the self-discipline required to be able to play one’s role well, and the shared aspirations and unity of purpose that makes participation meaningful.

As we learn to play the game we become attuned to the thoughts and actions of one another. We come to feel and think as others do, because “our flesh is inseparable from the flesh of the world”.⁹ In the immediacy of a unique situation we anticipate where other players are going to move next and what they are likely to do when they get there. Our understanding of what to do in each moment is shaped by cues that we are not explicitly aware of: the ‘thwack’ of the ball; the feel of the grass and soil under our feet; the movement of the wind around us. Informed by the dynamic existential feel of the situation, players come to move as one, in seamless and complex ways that embody the game and defy any linear or algorithmic programming, or calculating of ‘probability’.

Like any other human activity we are engaged in, be it making friendships to making a cup of tea, we become accomplished in that activity through being immersed in it, practicing our moves, making mistakes, being guided, corrected and encouraged by others who have been there before us, and who have our well-being in mind. At the same time we come to embody the language that frames aspects of our world, along with the dispositions and qualities of character needed to live in that world together. In the situation of coming to play football, we will be told “take it slowly, look up…. towards where you are going” and “steady….full strength now….pass to Stevie on the wing”. Such words are accompanied by the appropriate gestures and facial expressions of those who are nurturing us into this practice. In this way, through our engaged, practical involvement with things, we come to embody a range of dispositions towards the world, as we learn the meaning of a language. In this embodied, interactive way we come to be “in the world and the world is in us”.¹⁰

The complex, rich, dynamic and ineffable character of human life means that it is not possible to create a list of rules, or a programme, for all eventualities; we cannot learn a fixed set of structured dispositional responses to events in the world. Instead we must learn the art of responsively negotiating the contingencies of the world, flexibly drawing on past situations to inform our present moment in light of future considerations.¹¹ Consequently, human intelligence is a temporally integrated, hermeneutic achievement of an embodied, dispositionally informed individual embedded in a lived, meaningful environment.

As we learn to navigate the world appropriately through the guidance of others, we develop a sense of who we are, as well as what we can do and how we should do it. For example, we may make a fortnightly commitment to mow the lawns and weed the garden for an elderly neighbour, as we know that he struggles to do this job and that his family do not live close enough to help out on a regular basis. We also know how much pleasure he gets from sitting in his garden and admiring it. Our action is based on the insights we have developed over time, which orient us in light of the significance of things in this particular situation, and which illuminate what is a fitting response.¹² The motivations that inform our thinking are the values that circumscribe our shared understanding of the world. As well as being an expression of what is good in this particular situation, we also come to understand ourselves as someone who can be relied upon to uphold the values of our community. Others also come to see us in this light. Aristotle has argued that the human intellect is determined by upbringing, and not abstract calculative thought. The shaping of an individual’s reasons for acting and ways of acting are discursively constituted in community, so that her upbringing is responsible for instilling the excellences of character required to respond appropriately to the situations she encounters. That is, she perceives the situation in its entirety and responds with practical wisdom.¹³

Although we are first and foremost embodied creatures immersed in a world of pre-reflective activity, we can of course re-present and reflect on an aspect of our life and consider ways we can improve what we are doing and hence, who we become. For example, we make an inappropriate comment to a friend and see that we have upset her. We do our best to apologise, but realise that we have hurt her deeply. Reflecting on this gives us the opportunity to ask ourself such questions as: “How did I lose sight of what matters, and how can I avoid doing that again?” How can I now make amends when my verbal apology is certainly not enough? Such reflection gives us the opportunity to sharpen our insights and refine our understanding of the situation, enriching what we have to draw on as we move forward. At the same time we shape who we will become, as we consider what has happened and what we will enact next, in light of the values that we - in our community - hold to be salient and want to uphold.

What is significant to note however, is that this reflective process is a derivative mode of thinking, dependent upon having a pre-reflective understanding of things. It does not have the foundational status that the dominant Cartesian-based framework of things has given it; nor is it merely means-ends instrumental thinking, as the ends themselves are evaluated and shape our very way of being.

The move to embodied AGI

Some AI researchers have recognised the significance of our human body for thinking. Rodney Brooks is an Australian roboticist and a leading proponent of embodied cognition. Noting that experiencing the world like a human is essential to developing human-like intelligence, he argues that a machine needs to have a body — it needs to perceive, move, survive and deal with the world. Brooks also notes that abstract computation is the least important human skill, and that embodied, sensorimotor skills are essential for higher level skills like common-sense reasoning.¹⁴ Proponents of embodied cognition have also recognised the importance of engaged human interaction for enabling someone to become ‘human’. They argue that a humanoid robot makes people more comfortable in their interactions with it, and this will make it easier for the robot to learn.

However, one wonders what is fuelling the drive to create such a machine, and whether those involved with AI research fully comprehend what is entailed in our human way of being.

What narrative will an AGI machine come to inhabit, and why? Do AI researchers grasp that flesh and blood creatures such as ourselves are intimately connected to the cosmos that sustains us, and this connection must inform the narrative that we live, as our very survival depends upon it? Do they understand the way in which a unique character is informed and shaped within a discursive community, embedded within a form of life that structures a liveable narrative, framing the significance of things, and thereby the values that we enact? Do they comprehend the significance of the relationships that encourage, comfort, uphold and affirm us, so that we hold one another well?

Do they understand how our interpretation and understanding of the world, and hence, what we do, is shaped by language? For example, if we take any concept – let’s say the concept ‘bear’ - and we consider how we have come to grasp this concept through a myriad of contextual interactions which have secured its multiple roles in our conceptual system, what are we to say about this concept in a machine? Can an ‘artificial intelligence’ ever really think, as opposed to calculate? Can it know what it ‘thinks’? Do those who talk about embodied machines and push this notion of AGI really know what they are saying when they make their claims?

Conclusion

We have argued that human beings are so much more than just creatures of instrumental rationality. Although instrumental reasoning is responsible for the development of the tools, techniques and technologies that have made life easier and more comfortable for us, its dominance has come at a cost. It has arguably thinned out and devitalized the richness of our humanity, along with the world we inhabit. It has allowed the calculation of the most efficient means to a given end to replace the evaluation of those ends themselves. It has left many people bereft of understanding the significance of their life, as in a world requiring mere calculation, the self recedes; for it is when enacting practical wisdom that the self is chosen. If we continue to allow the narrow and impoverished concept of instrumental thinking and the practices that it underpins to define our world for us in an un-checked way, our humanity will suffer and our world will become less liveable.

If we uncritically allow the push for the creation of AGI to go unchallenged, we may find that the entities we meet in government departments, healthcare situations, education, lawyer’s offices etc., lack the human touch.

Dr Lynne Bowyer is an educator with a background in philosophy and mental health. Lynne has a PhD in philosophy and bioethics and has taught in primary, secondary and tertiary settings. ​Dr Deborah Stevens is a science communicator and educator. Her PhD in bioethics education is informed by her interdisciplinary background in science, psychology, public medicine and education.

They are founding Trustees of the Centre for Science and Citizenship (www.nzcsc.org), a charitable trust that works with students and communities throughout New Zealand promoting thoughtful engagement with the ideas and actualities that contemporary science and its accompanying technologies bring, in order to consider whether and how we can live well with them.

Endnotes

1. William Shakespeare, Hamlet, Act III, Scene 1.
2. The idea of ‘holding one another in being’ is developed in the philosophy of Martin Heidegger; see Being and Time, translated by John Macquarrie & Edward Robinson. Oxford: Basil Blackwell, 1962. It has been used beautifully by Hilde Lindemann Nelson in “What Child is This?” The Hasting’s Centre Report, 32: 6 (2002): 29-38.
3. René Descartes, Meditations on First Philosophy, Cambridge: Cambridge University Press, 1996, I, V.
4. Descartes, Meditations on First Philosophy, I, VI.
5. Ibid., V
6. Ibid., II
7. Max Weber, The Sociology of Religion London: Methuen, 1971, 270. Heidegger, “What calls for Thinking”, Basic Writings, from Being and Time (1927) to The Task of Thinking (1964), ed. David Farrell Krell, New York: HarperCollins, 1993,, 369-391; Theodor Adorno and Max Horkheimer, Dialectic of Enlightenment, trans. John Cumming, London: Verso, 1997, 37.
8. Friedrich Nietzsche, “Thus Spoke Zarathustra: A Book For All And None”, The Portable Nietzsche, ed. and trans. Walter Kaufman, New York: Penguin, 1976.
9. Heidegger, Being and Time, 98-99.
10. Heidegger, Being and Time, 376-377, 387-388.
11. John McDowell. Mind, Value, and Reality. Cambridge Massachusetts: Harvard University Press, 2002, 30-32.
12. Rodney A. Brooks & Lynn Andrea Stein. ‘Building Brains for Bodies’. Autonomous Robotics 1 (1): 7-25 (1994).
13. John McDowell. Mind, Value, and Reality. Cambridge Massachusetts: Harvard University Press, 2002, 30-32.
14. Rodney A. Brooks & Lynn Andrea Stein. ‘Building Brains for Bodies’. Autonomous Robotics 1 (1): 7-25 (1994).

Re-imagining Our Mortal Stuff: Finding Dignity Amongst the Matter of You (And Me)

By Bernard Leuthart

Wise man lookin’ in a blade of grass

Young man lookin’ in the shadows that pass

Poor man lookin’ through painted glass

For dignity.

Sick man lookin’ for the doctor’s cure

Lookin’ at his hands for the lines that were,

And into every masterpiece of literature

For dignity.

                        ~Bob Dylan

“Don’t go all timid on me, now! We’re only just getting to know where we are both going here and we ain’t there yet. Look, take my pulse. I know you are gonna work me out.” (Juanita J.) 

When I met Juanita early in my medical novitiate, I was terrified. Juanita was a Texan with Texan self-assurance and a state-sized understanding of her own diagnoses and the appropriate ways to keep her well. This had me on the back foot: she would tell me so kindly what was going on and what was to be done to hand her back to herself. But the gift with which she dignified my learning, ostensibly allowing me to do the doctoring, was her coming often to consult me and her ability to invite me into the personal space of her relapsing, remitting, interminable suffering. She got me amongst her stuff. When she died, I felt broken at the loss of that element of love that revealed more in me than I could reveal or heal in her. 

Generalists spend a great deal of time building their catalogue - episode after episode of care and delving into problems forming the skeleton of learning that informs the next consultation and the next. But Juanita had assisted me to something different, unfolding a map of possibility between us which pointed more to encounter than perfect solutions. 

Hungarian poet Miroslav Holub writes eloquently of a detachment of personnel sent into the Alps by an officer. Heavy snow falls and the landscape is obliterated. The group does not return. Seemingly, they have been sent to their deaths and their officer feels deep remorse. As if by some miracle, the group emerges unscathed three days later. How was it possible, they are asked. Admitting their initial despair, one of the number explains how he reached into his pocket and produced a map. Using this map, after the worst of the storm, they found their way out. On inspection of the remarkable map, it is discovered that it is not a map of the Alps, but of the Pyrenees. 

Taking this illustration, religious educator Maria Harris, whose work has had a profound influence on my role in general practice, makes the point that imagination brought to bear on our engagements has a power similar to the map of the Pyrenees. It has a prospective and explorative quality which can open possibility¹ and delve down into the dignity dwelling at the heart of our encounters. And at this core is mortal matter - our frail human stuff that seeks the kind of transformation that can point us, we can imagine, towards the divine. 

Engagement that sets out on this footing, that cleaves to a disposition for encounter, can’t help but engender dignity. It invites quite naturally an emptying of the subjective ego and an imaginative opening of ourselves to the person present there. It recognises something between subjects (the subjects you and me and the subject matter) that perhaps approaches reverence; what Martin Buber refers to as perceiving ‘a thou’ there. It establishes, re-imagines and re-forms the covenant potentiated between each other there, through which trust comes and grace is allowed to work. 

I am reminded of a recent audience with 102 year-old Ken, in the locked dementia unit, who, across a corridor, beams his appreciation to the nurse who has just kissed his head and told him he is amazing. Grinning, he draws a harmonica from his pocket and plays for her and me a jaunty hornpipe. His dignity is renewed there. And, irrefutably, ours is too. 

Dignity emerges when, despite differentials of power, knowledge, mobility or well-being between us, we are both disposed to accompanying the other and making space for the other, especially when the matter is unwieldy and the outcomes elusive. The doctor and the patient, in a very real way, are tasked with making the stuff between them ‘something other’. We are, I believe, in our medical or ordinary encounters that matter, to become witnesses together to something being made holy: our frail human stuff dignified by a redemptive transaction that, as bioethicist Dr Michael McCabe has put it, “joins the dots on grace.” 

Attending to engagement, grounding ourselves, as Juanita did, in a disposition for encounter and rooting out the deep dignity made mutual there, can unfold the map on us. It can bring us to the transcendent value of human heartedness that helps us into gratitude and a eucharistic kind of openness to real presence in each other. It’s the matter of you and me. Bigger than Texas. 

Dr Bernard Leuthart is Clinical Director at Waiwhetu Medical Group in Lower Hutt. 

Endnotes: 

1. Harris. M. Teaching and Religious Imagination. 1987. Harper and Row, San Francisco.

Dignity Wrapped in a Scarf of Gold: A Physician’s Reflection

By Sinéad Donnelly

In medicine and palliative medicine much is written about dying with dignity, about treating someone with dignity, but what do we mean? Harvey Chochinov, who has studied this concept in relation to people who are dying, writes:

“One of the most confounding challenges faced by end-of-life care providers is helping patients achieve or maintain a sense of dignity. Our prior studies of dignity and end-of-life care have shown a strong association between an undermining of dignity and depression, anxiety, desire for death, hopelessness, feeling of being a burden on others, and overall poorer quality of life.

…. patients deem a sense of spiritual peace, relieving burden, and strengthening relationships with loved ones among the most important facets of end-of-life care.^.  Several studies have linked these issues, including a loss of sense of dignity, loss of meaning, and a sense of being a burden on others, with heightened requests for a hastened death. Clearly, palliative interventions must reach beyond the realm of pain and symptom management to be fully responsive to a broad and complex range of expressed needs.”¹

I recognize dignity when I see it, yet I struggle to articulate what dignity might be.

Is it a decision one makes? Is it what others do to you? Is it how you respond to others? How do you die without dignity? Is vomiting as you die an undignified death?

Is being alone when you die an undignified death? Having been invited to write about dignity, I have become very conscious of looking more closely for those occurrences in the hospital. Will I hear it? Will I smell it? Will I contribute to it? Will I detract from it? Does it exist in the hospital? 

It is said that “rather than viewing death with dignity as a separate construct, it might be viewed as an interactive process between the dying and their caretakers. Terms such as pride, self respect, quality of life, well being, hope and self esteem all overlap conceptually with the term dignity. While most of these terms refer to internal states of mind, dignity is distinctive in that it also has an external component based on the perception of one’s worthiness of honour and esteem from others”² 

Gold is the colour that comes to mind. Her little face without teeth was wrapped in a scarf of deep blue and gold. As we entered the hospital room we saw the hands that tucked the scarf around her face. She smiled with her eyes and her whole face. Her two daughters by her side, watchful, were totally engaged. The photograph of a handsome soldier leaning against an Italian stone building in sunshine, many years ago, rested on the shelf to her right. The photographed face of her great grandchild, a baby, on the hospital wall opposite her bed. There were three vases of lilies - maroon, orange and white. The whole space embodied dignity. I just wanted to linger here, to be a part of this inspiring space. How was it created? 

Two days earlier, the night doctors handed over that this ninety one year old lady was dying. She had collapsed at home the previous night and was unconscious. Given her age and the way she presented clinically, it was deemed highly likely that she had had a brain stem stroke. In view of the poor prognosis, nurses had thoughtfully placed the patient in a side room rather than a ward space. The lighting was low. There were three generations of family in the room. The daughter, a nurse, stood closest, leaning in attentively. The air was heavy, full of concern in anticipation of her dying. 

When I first saw this frail unconscious woman, felt her hand, and asked for more detail from the family, I wondered whether her situation was irreversible. So, in the dim light, trying not to counter all that had been said by the ED doctors which had alerted three generations to arrive in the early hours, I introduced the new idea that we would wait and see and … that maybe she will wake up. 

By the following evening she was arousable. By the next day she could say a few words and smile, though a bit confused. We treated her kidney infection. She gradually sipped water and smiled more. There I witnessed the resurrection of a lady attended with the infinite patience of a caring family. They loved their mother. They loved their grandmother. 

I hoped that the young doctors who accompanied me on our rounds each day understood the mystery and power of what was going on in that room – not the fact that she became physically better but the honor and dignity that was in the air. As we entered that space of dignity we breathed that same air. It did not belong to one person. It was co-created. 

Dr Sinéad Donnelly, an Irish doctor, is a Palliative Medicine specialist and General Medicine physician at Wellington Hospital.

Endnotes:

1. Chochinov HM, Hack T, Hassard T, Linda J. Kristjanson LJ, McClement S, Harlos M. “Dignity Therapy: A Novel Psychotherapeutic Intervention for Patients Near the End of Life.” Journal of Clinical Oncology 23;24 (2005) 5520-5525. 

2. Chochinov HM, Hack T, McClement S, Kristjanson L, Harlos M. “Dignity in the terminally ill: a developing empirical model.” Social Science and Medicine 54 (2002) 433-443.

Stem cell research

Celina Capistrano

In 2004, a Nathaniel Report article outlined ethical issues surrounding the use of human stems cells in research and medicine. The following is an update on that article, providing a description of the different types of stem cells and the ethical issues associated with these. It also reports on the recent discovery of a new gene-editing technique, CRISPR/Cas9, and some of the ethical issues that are involved with its use.

Human Stem Cells

Human stem cells, characterised by their ability to develop into a range of different cell types, were first discovered in the mid-20th century and isolated in embryos in 1998. They may be found in embryos or derived from non-embryonic sources.  

Human embryonic stem cells (hESC) can be derived in two ways: (i) using early stage embryos (blastocysts) created from eggs fertilised with sperm in vitro, embryonic stem cells (ESCs) can be isolated from the inner cell mass of the blastocyst and exposed to factors that allow these ESCs to continue growing; (ii) by a process called Stem Cell Nuclear Transfer (SCNT) where genetic material from an adult cell (e.g.  skin or connective tissue) is injected into an egg that has had its genetic material removed (enucleated egg). The egg is then stimulated to develop until it reaches the blastocyst stage, thus becoming a ‘cloned’ embryo, at which point the inner cell mass is removed and grown in a petri dish (in vitro).  One of the key scientific advantages of producing pluripotent cells (cells that can give rise to all cell types)by SCNT is that it enables a patient’s own cells to be used, thus avoiding the problems of immunological rejection that occur when using stem cells originating from another person. Both of these procedures, however, involve the destruction of the embryo and consequently give rise to significant moral and ethical issues concerning the value of, and respect for human life. Additionally, with SCNT there is the extremely controversial issue of creating human clones. There have been research developments resulting in isolation of ESCs without destruction of the embryo thus bypassing concerns regarding embryo destruction. However, the further healthy development of such embryos remains uncertain.

Induced Pluripotent Stem Cells

Largely as a result of the ethical issues related to human cloning and embryo destruction, but also because of various research controversies, progress on human stem cell research from about 2001was somewhat stalled. However, in 2006, Japanese Scientists Dr Takahashi and Dr Yamanaka¹ (Nobel prize winners in 2012) discovered how to re-programme ‘somatic’ cells (‘non-embryonic’ or ‘adult’ cells) to reverse their state back into pluripotent form through the re-expression of key embryonic genes (suppressed in the somatic state), thereby enabling these already differentiated adult cells to behave as embryonic stem cells². These new cell forms, Induced Pluripotent Stem Cells (iPSCs), appeared to the have same essential characteristics as embryonic stem cells. With the ethical barriers to the development of stem cells now removed, these new methods have sped up the discoveries regarding stem cell research to a “near-exponential rate”³.

Since the Takahashi and Yamanaka discovery, developments in iPSC methods have provided the best opportunity to avoid the ethical objections associated with destroying human embryos as well as the problems of immunological rejection.

iPSC in therapy

With this new ability to differentiate pluripotent cells into any cell through iPSC technology, researchers are now developing new model systems to investigate the biology of early mammalian and human development as well as new approaches for regenerative medicine. These systems offer improvements in the ability to study disease at a patient specific level and to increase the potential for more efficient methods for drug discovery and screening for genetic disorders. Specific strategies to tackle a range of diseases and disorders including Parkinson’s disease, spinal cord injuries, heart disease, inflammatory diseases, joint injuries, and Age Related Macular degeneration are also being developed, and there is the potential to use iPSC in transplantation medicine.

There are still some significant safety issues that need to be overcome. For example, one of the early ways of creating iPSCs was by transfecting or inserting the desired genetic material into the adult cells through use of a virus to shuttle the transcription genes. The procedure, however, could have the potential for the virus to be integrated into the cell’s DNA and cause undesired mutations.

Though iPSC’s are the most ethical way to experiment with pluripotent stem cells, other ethical issues are likely to arise depending on where the research is heading. For example, scientists have now succeeded in creating human primordial germ cells (sperm and egg precursor cells). Some scientists will continue to advocate for the use of embryonic stem cells in research that aims to better understand embryonic development, and to find ways to treat infertility and improve in vitro fertilisation (IVF). The shift away from embryonic research due to the new technology may even lessen the rigidity of regulations in terms of these studies, which may be a problem in the future.

CRISP/Cas9

CRISPR-Cas9 is a molecular tool that is being used in laboratories to edit genes. It was noticed that in some bacteria the DNA sequence in cells was repeated many times, interspersed with unique sequences between the repeats, and this configuration was called ‘clustered regularly interspaced short palindromic repeats’ or CRISPR. It was later found that these unique sequences matched the DNA sequences of invading viruses, and that the bacteria made RNA copies of these unique sequences. This RNA would link up with an enzyme named Cas (CRISPR Associated Protein, a nuclease that can cut DNA) and guide the CRISPR/Cas complex to a matching DNA sequence, enabling the Cas enzyme to cut and disable the invading gene.

This discovery became a genome engineering tool when it was found that this technique could be used to cut not only viral DNA but any DNA sequence by altering the guide RNA to match a targeted gene sequence. Scientists can synthesise RNA sequences to match the DNA sequence they wish to target and use CRISPR/Cas9 to repair or inhibit the gene. There are a number of Cas enzymes but Cas9 is the best known.

In 2015, researchers in China used CRISPR technology to edit the genes of human embryos in their research into a cure for the blood disease, beta-thalassaemia⁴, and again in 2016 in an attempt to introduce a mutation that would make people immune to HIV. UK researchers were recently successful in obtaining permission from the Human Fertilization and Embryology Authority to edit human embryos using CRISPR/Cas9 genome editing technology⁵. Their research was aimed at developing a better understanding of successful human embryo development and the causes of miscarriage and infertility.

With CRISPR/Cas9 genome editing technology it is possible to cut out and replace defective genes, which also means that primordial germline cells can be altered. The removal of ‘defective’ traits and the possibility of creating enhanced human beings would usher in a new era of eugenics thinking and practice. A number of scientists, including Jennifer Doudna, one of the scientists who discovered the CRISPR/Cas9 technique, have noted that there are significant ethical issues associated with the development of germline editing, and that CRISPR should not be used on reproductive DNA, or germline cells, while allowing laboratory research to continue⁶.  They are concerned that, unless there is education and discussion amongst both scientists and the public about the risks and benefits of scientific developments such as CRISPR, then (i) there a greater likelihood of unethical use of such technologies and (ii) research into the therapeutic use of genetic changes that cannot be inherited, will be put at risk. 

The potential for a ‘new eugenics’ is a concern with CRISPR/Cas9 technology, and as described above, the destruction of embryos is a key ethical issue associated with stem cell research. However, there are other ethical issues associated with stem cell research and germline modification. These include the commodification of human reproductive materials; the potential for exploitation of donors (e.g. women donating eggs for the derivation of hESC lines); the possibility for human reproductive cloning; and, finally, uncertainties relating to the creation and use of human–animal hybrids and chimeras for research⁷.

Endnotes

1.Takahashi, K., and Yamanaka, S. (2006). “Induction of pluripotent stem cells from mouse embryonic and adult fibroblast cultures by defined factors.” Cell 126, 663–676. DOI:http://dx.doi.org/10.1016/j.cell.2006.07.024

2. Brunt K.R, Weisel R.D, Ren-Ke L. (2012) "Stem Cells and regenerative medicine- future perspectives" Can. J. Physiol. Pharmacol., 90(3), pp.327-335. doi: 10.1139/y2012-007 

3. Ibid.

4. Cyranoski, D., and Reardon, S. (2015). “Chinese scientists genetically modify human embryos.”  Nature News, 22 April 2015. doi:10.1038/nature.2015.17378 (Original Article of the Research from China, Liang, P., Xu, Y., Zhang, X. et al. (2015) Protein Cell, 6: 363. doi:10.1007/s13238-015-0153-5)

5. Callaway, E. (2016) UK scientists gain licence to edit genes in human embryos. Nature News, 530(1),18.doi:10.1038/nature.2016.19270

6. Doudna, J. (2015). “Genome-editing revolution: My whirlwind year with CRISPR.” Nature, 528(1), 469–471. doi:10.1038/528469a and Doudna, J. (2015). “Perspective: Embryo editing needs scrutiny.” Nature, 528 (S6). doi:10.1038/528S6a

7. Caulfield T, Kamenova K, Ogbogu U., Zarzeczny A, Baltz J, Benjaminy S, Cassar PA, Clark M., Isasi R., Knoppers B., Knowles L., Korbutt G., Lavery JV, Lomax GP, Master Z, McDonald M, Preto N, Toews M (2015) "Research ethics and stem cells" EMBO reports, 2015, Vol.16(1), pp.2-6 doi:10.15252/embr.201439819

Celina Capistrano graduated with a Bachelor in Biomedical Sciences (BBmedSc) specialising in Molecular Pathology and Genetics in 2015. She is currently undertaking a practicum with the Malaghan Institute of Medical Research as part of her Masters in Clinical Immunology course with Victoria University, Wellington.

People Who Use Wheelchairs Don’t Actually Want to Kill Themselves

David Bekhour challenges the underlying and unquestioned assumption in the film ‘Me Before You’, that someone with a spinal injury and using a wheelchair will unquestionably find life too difficult and want to end it all. “People in wheelchairs don’t actually want to kill themselves”, but films such as this perpetuate the antiquated and dangerous idea that the lives of disabled people “are somehow less worth living”.

Available online at: http://medium.com/@OptimisticGrin/people-who-use-wheelchairs-dont-actually-want-to-kill-themselves-d76493596eb6#.z276ob8mt

Guest Editorial: All lives matter … all means ALL

Wendi Wicks

On Tuesday 25 July, at the Kanagawa Kyodokai at Tsukui Yamayuri En, west of Tokyo, 19 disabled people were stabbed to death as they slept. The killer was a former employee at the residential/rehabilitation facility for disabled people. He moved rapidly through the building – in 50 minutes he killed 10 men and 9 women and injured 24 others. He then drove himself to the police station to hand himself in. He said it was better “that disabled people disappear”.

This was not the first time he had made explicit his belief that disabled people should be eliminated. In February he attempted to hand deliver a letter to the speaker of the Japanese parliament.

In it he outlined in stark terms his belief that disabled people should be killed:

“I believe there is still no answer about the way of life for individuals with multiple disabiIities. The disabled can only create misery. I think now is the time to carry out a revolution and to make the inevitable but tough decision for the sake of all mankind … I envision a world where people with multiple disabilities can be euthanased with an agreement from the guardian.”

He claimed he could wipe out a total of 470 disabled individuals and offered a “plot”, to be put before the prime minister, whereby he would kill 260 people, be arrested but only imprisoned for 2 years and then receive plastic surgery and a new identity. All of this would be “for the sake of Japan and world peace”, and would be suitably remunerated by the government.

So how did this tragedy play out in the media? Given the prolonged outpourings of grief and solidarity with those killed when it came to similar multiple killings in Paris, Nice, Orlando and Kabul, one might expect something similar. There one saw wall-to-wall coverage, Twitter storms and trending hashtags; altered profile images to indicate solidarity. There were repeated updates, headlining news bulletins on radio and TV – some talkback hosts made wise sayings, other TV hosts left the soothsaying to their guests. Many attended memorial events or vigils.

But in the case of Tsukui Yamayuri En, Japan’s worst mass killing since World War 2, the response was a roaring silence. Hashtags, memorials, public outrage, panels of soothsayers just didn’t happen for the general public, or in international settings. We disabled people know because we looked.

In contrast, disabled people worldwide reacted with a storm of comment, horror and action. New Zealand disabled people led off with a vigil – most attenders were disabled people and there was no media attention. Protests, memorial services and marches of solidarity followed worldwide. Many excellent blogs with sound analysis were written. But only disabled people mourned in public.

A particularly challenging part of our public mourning and memory was when we found that the men and women killed at Kanagawa Kyodokai would not be named, because, it was said, their relatives were too ashamed to acknowledge having a disabled family member: in effect erasing disabled people from the public record and perpetuating our invisibility. It is an obscenity, felt strongly by us and still stinging. All the disabled people who have learned of this lack of names recoil in either body or spirit.

Sadly, what happened in Japan is symptomatic of the everyday invisibility of disability we experience.  Society sees disabled people as not really needing human rights, because we aren’t fully human. It seems that our names or identities don’t matter. We are pegged as ‘takers’ of society’s precious resources. As reflected in court judgements, it is understandable if disabled people are abused because caring can be difficult and stressful. And if this is understandable, well it may be OK to euthanase them.

The message here, (as in Hitler’s Germany where over half a million disabled people were gassed, starved, neglected, or sent to the death camps), is the opposite of “all lives matter”. To the general public, and in the media, our lives don’t seem to matter, and the realities of how we live are seen to be a good reason for our deaths. There is an invisibility of the humanity of disability.

So Tsukui Yamayuri En is not our first and nor is it an unusual encounter with such attitudes and their consequences. It is most troubling that we encounter similar attitudes as common currency: when disability is seen in negative un-affirming terms; where people believe ‘better dead than disabled’, notably if one needs assistance with bathing, toileting, or getting in and out of bed (loosing dignity in such processes); when we are seen to suffer, have unendurable pain, feel hopeless and a burden. In these ways disabled lives are daily discounted.

While these inimical attitudes exist about disabled people, we will remain at risk of the extermination the Japanese knifeman advocated for – whether in New Zealand or elsewhere.

In this context, any attempt to put up assisted suicide legislation with so-called eligibility criteria will also have deadly consequences. As various select committee reports make clear (Scotland, UK, Victoria, Bulgaria), legal safeguards and criteria cannot make such legislation sufficiently robust. Disabled people deserve much better - it is our world too.

Wendi Wicks is a celebrant, writer and strong advocate for disability rights. She convenes “Not Dead Yet Aotearoa”.

Editorial: Compassion Fatigue

In a recent article in North & South Magazine^[i], Donna Chisholm discusses the issue of compassion fatigue amongst doctors and some of the implications of this for patients. It is claimed that around 50 percent of doctors report compassion fatigue, and that there is an exodus of a quarter of young doctors from the country within three years of graduation, many of whom report stress and burnout.

Compassion fatigue has been described in terms of the draining away of what is seen as a finite reservoir of caring. However, recent research from Auckland University’s department of psychological medicine indicates that the ‘leaky reservoir’ model may not be adequate. Its survey of nearly 600 doctors indicates that, in fact, younger doctors report more obstacles to compassion. This work suggests that there are four key factors that need to be looked at and over which a doctor has little control: burnout/fatigue, difficult patients, external distractions and clinical complexity.

Chisholm highlights ‘difficult patients’ as one of the more interesting outcomes of the research. While ‘burnout’ tops the list of influences, “a patient’s attitude and demeanour are almost as important. That means if your doctor actually likes you as a person, you’ll probably get more compassionate care.” (p.61). One of the study authors suggests that “doctors are normal people. If they are confronted with a person who is unpleasant, demanding, non-compliant, ungrateful, malodorous … they won’t like them and they won’t care for them.” (p.61). The report’s author posits that there is an evolutionary aspect to this – it is inefficient to keep caring for people who don’t deserve it. He believes it is basic human functioning to ask ‘Do I like you?’ and that the answer to that question is the first decision that is made; in his opinion “no amount of professional training will ever get us past that fact. Ever.” (p.62).

A more hopeful analysis is offered by an Auckland City Hospital emergency department physician who suggests that while emergency departments are places where patient behaviour is likely to be at its worst, this is no reason for doctors to leave their compassion at the door. He has become considered by his colleagues the person best able to deal with the difficult cases - the angry drunks, the drugged and the homeless regulars who just turn up for a feed – and says: “I’ve learnt to like the people you wouldn’t normally like.” (p.62). Changing the way he thinks about patients has been the key to changing the way he acts, and while fatigue and burnout are factors in compassion failure, he believes that ‘healthy thinking’ can reduce it.

This approach is supported by other research undertaken with doctors that found that those who didn’t feel stressed had one main trait in common, that of being connected to their purpose, or a ‘higher calling’: “The doctors who are absolutely thriving all sound like they’re on a mission.” (p.62). One 60-year-old GP finds he now feels more compassion for his patients than he did 25 years ago. While he has over time become better at the ‘mechanical’ aspects, diagnosis and treatment, he also tries to listen to his patients, to understand what’s happening through ‘their eyes’. A fourth year student suggested that a lot of young doctors do not really listen to patients, “they’re filling out a check box in their head of things they feel they need to ask. I think that detracts from the fact that there’s a patient who’s an individual in front of you. Maybe they have information that’s not on your checklist.” (p.63).

A former primary-care nurse who trains health workers in how to better communicate with patients believes the ‘difficult patient’ problem is exaggerated and that ‘difficult patients’ are created by the way they are spoken to. At the same time, she does not believe every nurse and doctor can be taught to be compassionate and empathetic, and that around a third who attend her workshops “will never get it.”

The factors involved in compassion fatigue include a mix of environmental factors such as workload, the complexity of some illnesses, the behaviour of patients, as well as the evolutionary and personal factors that cause doctors to respond in certain ways to their patients. None of these is easily changed. However, finding ways of preventing compassion fatigue is important, for the doctors themselves but also because empathy and compassion are associated with better patient out-comes, and failure of compassion with poor decisions.

Of course, compassion fatigue is not restricted to the health professions; it also affects teachers, politicians, social workers, chaplains/pastors, prison workers, youth workers, counsellors and parents. With that in mind we have asked seven different practitioners from a variety of caring professions to offer their reactions to, and insights on, the North & South article.

We believe there is something of substantial personal value for every reader in the richness of the authors’ reflections offered in this issue. 

Sue Buckley is a researcher for The Nathaniel Centre and Dr John Kleinsman is the director of The Nathaniel Centre.

[i] ‘Cold Comfort’ by Donna Chisholm. North & South, Issue 59, September 2015. Pp. 59-64.

Sustaining Compassion

Anna Holmes

Compassion means suffering with. It is about bearing witness to suffering. Bearing witness is not just being a bystander but entering into the world of the sufferer. Mirror neurones in human brains reflect this suffering. Medical students are encouraged to practice empathy. This is an act of spiritual connection, of compassion, that recognises our common humanity.

As a medical student in the early 1960s I was taught how to deal with suffering by observing the way in which my teachers dealt with it. We did not have formal teaching on ethics and relationships but we saw our teachers kneeling by bedsides, treating patients with gentleness and courtesy, as one human being to another. I accompanied a GP on visits, first in a poor neighbourhood where he took the prescription to the patient because, he said, “They will not go and collect it”’. Next we went to a patient recovering from a heart attack.  The GP told me “He was just sitting in the hospital and I knew he would be better looking at his view of the Braid Hills. So I said I would look after him and he was sent home.”

Last month I read two articles on burnout in doctors, suggesting that many doctors in NZ and the US suffered from ‘compassion fatigue’. The NZ article suggests four key factors: fatigue, difficult patients, external distractions and clinical complexity. It was most common in younger GPs. It also suggests that turn offs for doctors are patients who are aggressive, smelly or dislikeable and compassion is lacking for such patients. The US article also suggested bullying by senior staff and not being supported were factors in compassion fatigue.

When I interviewed 22 NZ GPs for a thesis on spirituality, 16 of them said they had been burnt out. They were unable to respond compassionately to the needs of their patients, family and self. It was nearly always as a result of simultaneous personal and work problems and a lack of support. A number had also been bullied.

The advent of scientific medicine has changed expectations for doctors and patients. It has shifted the focus of medicine from caring to curing. The technological and therapeutic triumphs make students think that most things can be cured. They expect a medical world that is predictable and controllable. In fact it is nothing of the kind. An ageing population means that they are going to have to deal with many patients with chronic or terminal diseases. These are not curable but require care and compassion.

The innate compassion of many of the students is impressive. They spend five weeks working in a rest home and write an essay about their experience. These often show an extraordinary growth in understanding, from ignorance of the elderly to understanding them as treasures, even when they are demented or disabled. Students wonder at the rich and interesting lives of the ‘elderlies’ depicted in photographs on the walls of their rooms.

So how can compassion be enabled for doctors and patients?

Work conditions are important – recognising the limits each person has for work and providing mentoring and support. Having experienced working 80 hours a week as a house surgeon I do not think this is just about exhaustion. It is about having a community of work where all staff care for each other.

Dealing well with difficult staff is also important.  I still relish the story of a contemporary of mine who when asked by a grumpy surgeon whether he thought he was God replied ‘No sir, just his house surgeon.’ The Royal Australasian College of Surgeons recently published a report about bullying in hospitals that found half the trainees had experienced it.

Doctors who continue to enjoy their work ensure that they have balance in their lives with body, mind, spirit and human connections all attended to. They have creative activities outside medicine that feed their spirit – painting, writing, gardening, climbing mountains, cooking and many others.

Junior doctors spend many hours working on computers to obtain and transmit clinical information about their patients. But they also need enough time to spend with patients and in reflection. I do wonder whether working shifts in medicine is as satisfying as caring for a patient from admission to discharge.

While spirituality is acknowledged as being important in health and healing, there is very little attention paid to it in medical school or hospitals. Scientific thinkers tend to reject concepts that cannot be explained by science. I believe that this may be partly responsible for the increase in burnout. If medical work connects doctors deeply to self, other, the natural world and the transcendent, it enables healing and growth. If cure is the main focus it fails to satisfy. Memorable patients for the doctors I interviewed were often those who died well under their good care. One of my memorable patients was dirty, smelly and unable to talk but he had a beautiful, toothless smile.

 Anna Holmes MB ChB PhD is a Clinical Senior Lecturer in the Department of General Practice, Otago Medical School.

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References:

Time Magazine, Vol.180, No 9-10 September 7-14, 2015, p 44-50.

North and South, September 2015, p. 59-64.

Getting Tired of Me Getting Tired of You?

James Lyons

Donor fatigue is not an uncommon expression.  The number of requests for donations coming through the mailbox and other media has been increasing to the point where deciding where and what to give has become very complex.

There are so many needs, one person told me, that I know my little contribution is never going to make a difference.  Now I don’t give anything!

Others feel quite exhausted by the constant flow of requests.  Some get bewildered.  Some get angry. Tiredness means no energy.  No energy means no motivation; good intentions do not translate to action.

Compassion Fatigue is similar but less visible.   It affects in particular those in the caring professions.  As a priest, I have been asked to reflect on this phenomenon from a pastoral perspective.

In the day-to-day pastoral ministry a priest or lay pastoral leader is confronted with a variety of human needs:

• A parent calls very worried about the teenage child who wants nothing to do with the Church.
• A family seeks help with the payment of school Attendance Dues.
• A knock at the door presents a need for assistance with food, perhaps housing or for an ear to listen to a sad tale of abandonment or embezzlement.
• A grandparent worries over grandchildren who haven’t been baptised.
• Parishioners in hospital or hospice need to be visited, their families comforted.
• A death in the parish requires other commitments to be set aside.
• Couples preparing for marriage need to be given time and attention.

The list is endless!

There have been times when, as a priest, I have caught myself racing through an appointment because of my familiarity with the issue.  I forget that, for the person involved, this is their first experience of death or loss or setback, etc., while I have dealt with it several times.

It is easy to anticipate their questions and not to be totally alert and present to their unique situation.  This can give the impression that I don’t care or do not take seriously their particular concern.

When one problem or emergency follows another, when you know there are several emails or phone messages awaiting your attention, the temptation to dismiss people as quickly as possible is hard to resist.  Or else you carry on, but you feel so very tired, and you know you are not focussing as well as you could, or should.

Compassion fatigue, in the pastoral sense, is not so much exhaustion of motivation but more a loss or absence of the ability to concentrate and to fully engage.  It is very much a case of “the spirit is willing but the flesh is weak”!

One factor that might allow this kind of fatigue to be less detected in the clergy, is that pastoral ministry quite often deals in the realm of the spirit and that’s harder to see.  A doctor who, through inattention may misdiagnose or prescribe the wrong medicine, will be quickly called to account.  But a priest who doesn’t really listen in the confessional or offers some outdated theological advice, or gives out some over-worn cliché response, is not going to be so readily caught out.

This sort of behaviour may not be so much the result of compassion fatigue but rather a laziness, perhaps even arrogance, that is irresponsible.  Pastoral workers owe it to themselves as much as to those in their care, to stay relevant through study and reflection.  Not to do so is to risk becoming a disappointment to themselves; that, in turn, can lead to depression and total shutdown.

While doctors and other professionals usually see people on an “appointment only” basis, priests are more “open season” to callers.  A phone call or door knock can come at any time of day or night and there is an assumption on the part of the people that the priest will answer.  No matter he may have just returned from a parish meeting or funeral preparation, the caller has a need that cannot be postponed.

Despite real efforts to hide weariness or annoyance at the interruption, the caller will often pick this up, going away with an “he doesn’t really care” impression.

Personally, the worst time is just before Mass:  Someone wants you to remember a special intention at Mass; another tells you of the death of a relative overseas; a car has been parked with its lights on – can you please make an announcement; there’s a cake stall after Mass but we forgot to put it in the newsletter – will you tell everyone; today is a special day for Mr & Mrs… - can you give them a blessing; it’s my birthday, will you say a prayer for me…

Loving and caring as such requests show themselves to be, their timing is challenging.  It is in these moments that compassion fatigue hits me between the eyes.

James Lyons is a priest serving in pastoral ministry for the Archdiocese of Wellington

Carrying the Weight of Ourselves: Compassion and the Divine Art of Kindness

Bernard Leuthart

I am riding to plague again.
Sometimes under a sooty wash
From the grate in the burnt-out gable
I see the needy in a small pow-wow.
What do I say if they wheel out their dead?
I'm cauterised, a black stump of home.
                                      Seamus Heaney

Not so long ago, I had 86 year-old Alf in to cut a lesion from his shoulder. Alf is my idea of gracious old age - deep respect and real joy burning in his blue eyes as he spends everyday in service of someone else.

Things seemed to go very well with the procedure and Alf fell asleep while I worked. As I finished up, trimming and tucking my edges, Alf woke and made a strange declaration. He had been dreaming, he said, of an incident at the end of the War when he was assigned at age twenty-one as a sniper in Gibraltar. Guarding the harbour, he had been ordered to fire on a sailor whose craft had breached a strategic position. He had hesitated, and his sergeant had pressed him to take the shot.

"I killed him, I'm sure," said Alf. "A boy my age - I saw him fall dead into the sea."
Then graceful, radiant Alf broke into floods of tears.
"I am sorry to cry, " he said, "but I have been dreaming of the pain of that mother whose boy I shot and what she carried, and if anything was able to repair it?"

We shared a thought about the weight of life to be carried in struggling to be good and happy. He smiled his eyes again and left.

I have been troubled often in recalling Alf's story and what I think it tells us about carrying the weight of ourselves and working at happiness, holiness and kindness; the daily balancing act of bringing - dragging - the raw stuff of our humanity towards divinity. How that takes a daily act of faith; of fidelity to living compassionately.

The salient wisdom flowing out of Alf's story and the unspoken, transcendent experience that his life has become in redeeming his own narrative offer a potent reminder that if we are to manage the lumbering weight of ourselves, if we are to find our feet despite the numbness, enmity, dissatisfaction, brokenness, separation and fatigue in our complicated lives - let alone in the lives of those for whom we care - then we must embed compassion in our dailyness and ordinariness, down amongst our very matter. To know deep satisfaction in ourselves demands that we develop a contented, unconditional focus on the well-being of others; a disposition for kindness from a warm, alive, open heart.

Suzanne Aubert, who recently updatedis about to update her status to 'Venerable', nailed the attitude when she enjoined her sisters to; "Be easy of access. Receive others amiably. Have a heart ready to devote itself." But how to have such a heart so disposed amongst the clamour and shambles of ourselves fronting up at home and at work?

First, begin in contemplation. Compassion begins in practising being still and being present. Experiencing real presence requires a kenotic self-emptying - a preparedness to sit within the tension between disturbance and joy and practise forgetting ourselves; letting go and letting God. Being present, meditating and mindfully attending to breathing - shifting and sifting the weight of our very human selves - allows us to be buffeted about by the divine.

The effort required is a detachment from our own weight - our faults, our inability to reconcile and forgive, our old hates: in short, it is a letting go of our resistance to grace. The foul weight of resentment, numbness, and self-hate closes us to the possibilities of compassion (first, to ourselves). When we are unbound and more able to forget and forgive ourselves, God knows what compassion and abundance might flow into our divisions and our engagements.

Teresa of Calcutta wryly observed:
"People are unreasonable, illogical and self-centred: forgive them anyway.
If you are kind, people may accuse you of ulterior motives: be kind anyway."
Her words highlight for me the unease between carrying the cross-bar of ourselves and embracing the extraordinary lightness of being that opening abundantly to others can bring.

On a similar note, a good friend of my mother's told her at her dying:
"I've always believed that people are sacraments: - Be an outward sign."
Fidelity to living compassionately - as blue-eyed, deeply-loving and serving Alf has illustrated - offers us a means to open to the abundance and possibility that might break in and deeply disturb our tired humanity to show us divinity. The Dalai Lama, quintessential example of living graciously and warmly in the liminal space between disturbance and joy, reminds us that kindness is everything. We are invited, quite simply, to be an outward sign of this material.

Dr Bernard Leuthart is Clinical Director at Waiwhetu Medical Group in Lower Hutt.

Compassion Fatigue: an institutional issue

Michael McCabe

‘Most young doctors enter medicine with quite a profound desire to help other people. Somehow, across the first decade or so of training and work, that diminishes.

We call it compassion fatigue – the idea that doctors have a finite reservoir of caring that drains away over time, leaving some of them a cynical, couldn’t-give-a-damn husk of inhumanity.’
Nathan Consedine (North & South, September 2015, p.60)

The Greek word for compassion ‘splagchnizomai’ literally means ‘to be moved’ in ‘one’s bowels.’ Emotions were viewed as ‘residing’ in the bowels – literally ‘in the guts.’ Thus, a person without compassion was essentially unmoved by the plight of another and could be described as being ‘hard’, ‘heartless’, or ‘harsh’ with ‘no reach’ inside them.

Compassion fatigue is not limited to the healthcare professions. It is part and parcel of any professional role that involves advocacy for or care of others – it is potentially the Achilles’ Heel of all professions. Professional life is marked by the complex interplay between personal well-being, workload, role expectations, rapidly changing social and cultural norms, and by systemic issues, such as the strengths and particular shortcomings of the institutions in which the professions reside. Frequently the professional is caught in the crossfire of one or more of these dynamics with the result that his or her energy and passion for the profession and its goals dissipates. That feeling, described by many today, ‘of getting through the night’, is most notably marked by a reduced ‘reach’ of compassion, and, frequently, by cynicism.

Given its multi-dimensional nature and causation, compassion fatigue requires addressing on several levels – at a personal level, and at a communal or institutional level.

At a personal level compassion can only be sustained if the professional ‘tends to the soul.’ Being an advocate and caring for others drains the advocate and empties the caregiver. Whatever a person’s faith dimension or motivation, such roles demand ‘Sabbath’ time – times of refreshment and re-creation, times of rest and review in which we ‘listen again’ to our souls and nurture them in healthy and life-giving ways.

While bread-winners may well recognise this need for rest and recreation, such a ‘Sabbath’ break is not always possible given financial pressures on families and individuals and the demands of the profession. That is why the culture of the particular institution, be it healthcare, medicine, law, or religious faith, also requires refreshment and renewal if it is not to exacerbate or even be complicit in compassion fatigue amongst its personnel.

However, institutions themselves can demonstrate compassion fatigue, evident above all in the ways in which they respond to those who are most vulnerable, including the demands placed on personnel, the language used, and the prevailing attitudes and mind-sets of those vested with power. Nowhere is this insight being illustrated more profoundly than in the leadership and vision of Pope Francis.

In the recent Synod on the Family, Pope Francis gave a clear illustration of the need for the Church to return to the ‘compassionate reach’ of the gospel. In doing so he challenges those who would tie mercy and compassion to obedience to the law. For example, in his closing homily, commenting on the story of the healing of Bartimaeus, the blind beggar, he said,

“This can be a danger for us: in the face of constant problems, it is better to move on, instead of letting ourselves be bothered. In this way, just like the disciples, we are with Jesus but we do not think like him. We are in his group, but our hearts are not open. We lose wonder, gratitude and enthusiasm, and risk becoming habitually unmoved by grace. We are able to speak about him and work for him, but we live far from his heart, which is reaching out to those who are wounded. This is the temptation: a ‘spirituality of illusion’: we walk through the deserts of humanity without seeing what is really there…a faith that does not know how to root itself in the life of people remains arid and, rather than oases, creates other deserts.”

At the conclusion of the Synod Pope Francis then offered a number of antidotes to compassion fatigue, at both a personal and institutional level, including

• Attempting to see the ‘issues having to do with the family’ in the ‘light of the Gospel’ without ‘falling into a facile repetition of what was obvious or has already been said.’
• ‘Seeing difficulties and uncertainties which challenge and threaten the family in ‘the light of the Faith, carefully studying them and confronting them fearlessly, without burying our heads in the sand.’
• Portraying, once again, the vitality and vision of the Catholic Church, ‘which is not afraid to stir dulled consciences or to soil her hands with lively and frank discussions about the family.’

While Pope Francis was speaking specifically about the family, his wisdom and courage gives fresh heart to all caregivers and advocates of compassion and mercy and reminds us not to neglect the ways in which ‘compassion fatigue’ may permeate the very institutions within which we practice our respective professions.

Rev Dr Michael McCabe is the founding director of The Nathaniel Centre and Parish Priest of Our Lady of Kapiti Parish, Te Whaea o Kāpiti.

Compassion Fatigue in Nursing

Jo Walton

There is a sentimental idea in many of our minds that nurses are the epitome of caring professionals: gentle, kind, friendly, compassionate, empathetic, capable and calm. Certainly this is an ethos that the profession attempts to live up to, and many of us would also add that nurses need to be skilful, articulate, courageous, ethical and resilient. The expectation that nurses will provide compassionate, respectful and trustworthy care is spelled out in the profession's Code of Conduct. The Code is framed around core values of respect, trust, partnership and integrity, and although the word 'compassion' is not used, it is inherent in the whole code, and nurses know they have a professional responsibility to live up to this standard.

In spite of expectations and codes sometimes nurses slip up and may behave in ways that are less than ideal. Sometimes their heart simply isn't in their work. As human workers and human beings, nurses, like everyone, are fallible. The very idea that nurses might lose compassion, become tired of caring, be at any time unable to give unconditional regard to patients and families is actually a rather frightening one. Nurses are people on whom any of us might (and do) depend in times of extremis, when sick, frightened, in pain, vulnerable, perhaps alone, whether as patients or as relatives or friends of those in need of care and protection.

Why would things go wrong in this way? I suggest there are three factors at play when compassion fatigue appears amongst nurses: the nature of nursing work itself, work demands and overload, and systems and institutional values that operate at odds with the values of nurses themselves.

Nursing work involves extensive elements of emotional labour. In their everyday work nurses deal with sensitive and intimate aspects of life, much of it in the domain of the private, often invisible and unspoken. While it is quite normal to discuss the fact that patients and families are troubled by fear, grief, sadness, it is less common for nurses to talk about the abject emotions they experience themselves. Anger, surprise, fear, dread, sympathy, joy are acceptable topics, but revulsion, repulsion, disgust, horror, terror, and libidinous arousal are not so easily slipped into a conversation, even an earnest one.

The mechanisms nurses employ to deal with the abject, and the fear and the anxiety that their work entails, have been explored both psychoanalytically and sociologically. Over several decades the received wisdom that nurses ought to conceal all their emotional reactions has been changing, and nurses now may (at times) laugh or cry with patients and families in their care. Nevertheless a full range of emotional expression would derail professional comportment and be counter to the value systems that hold the profession together. To work at their best nurses must hold their emotions in.

At the same time, nursing work itself is emotionally laden, driven as it is by the desire to help, to serve, to tend, to be compassionate (a voluminous literature backs this idea), in combination with an interest in things medical and mysterious, psychological and deep, bizarre and exotic and dangerous.

But it is not just disease and disability, sickness and health that nurses must deal with. There are also different needs and expectations of patients and the increasingly production-conscious environment in which nurses work. As financial pressures squeeze our health systems tighter, and the pressure for increased work volumes increases, nurses often feel they must ration care. Care rationing means that they must decide whose needs are most urgent and what care can and must be left undone. It means deciding what words can be left unspoken, what comfort can wait until later. It is a dreadful situation for nurses, patients and families to be in. While nurses are balancing unseen demands, patients and families are experiencing things rather differently. Time drags for those who are ill or waiting, but not for the staff who are preoccupied with getting everything done, who know that they must balance this patient's needs against that one's, this emergency over that potential problem.

In situations such as this nurses can feel overwhelmed by helplessness, frustration, tiredness and tedium. Lack of insight develops and ordinariness takes over. People who do not feel valued, who do not have the resources they need, who feel helpless to change things do not make good, compassionate, care workers. Emotional control can break down, and a desire not to care can creep in, when the load becomes too great to bear.

Nursing is hard work. Physically, psychologically, emotionally and spiritually. A firm sense of one's own values, driven and backed by a strong spiritual faith is some defence against failure, provides some insurance, some inoculation in terms of what is right and proper and why we chose this work. Compassion fatigue is a sign that health workers themselves need some help, care and relief. It is also a 'canary in the mine' signal that a larger system is in serious danger.

Jo Walton is Professor of Nursing in the Graduate School of Nursing, Midwifery and Health at Victoria University of Wellington and Deputy Chair of the Nursing Council of New Zealand.

“When we walk to the edge of all the light …”

Sinéad Donnelly

I am a palliative medicine doctor and recently I have returned to practice acute hospital medicine.  As professionals serving others, doctors train to be aware of their human reactions to events, interactions and people. It is part of the discipline of being a doctor.  From my years of experience I believe this is fundamental to good healing practice, resilience and growth. As Dr Tom Mulholland says in the article:  “You have to live in the moment and practice mindfulness.” (North & South, September 2015, p. 62).

One might expect that Palliative medicine would be one of the principal areas for “compassion fatigue”. Yet it is also potentially a nurturing place for staff, aware of each other and kind to each other. Although compassion is called from us as doctors, nurses, chaplains and allied health staff, we also receive from each other. This mutuality sustains us. This does not automatically happen in a palliative care team, community or unit. It needs to be a conscious value of the team, attended to on a daily basis. We cannot be compassionate and kind to the patient if we are not kind to one another. A buoyancy of life is thus created which sustains us. In this space, although serving those who are dying and witnessing untold grief, we support each other.

Mr W (89) came to the Emergency Department during the night. The night registrar summarized the patient’s story – shortness of breath, attributing it to exacerbation of chronic obstructive airways disease. I met Mr W Saturday morning with Ella the registrar for that day. He was returning from the toilet, sitting now on the side of the bed and breathless. I was unsure how different this was from the time of his admission 6 hours before. I thought he had heart failure. We asked the nurse to give him frusemide. I thought the tracing of his heart (ECG) suggested ongoing damage to his heart. We continued on seeing other new patients.

About an hour later, an alarm bell rang in the Medical Assessment Unit - Bed 23 - Mr W’s bed. The nurse was there. He had just died. I decided immediately that CPR was not appropriate. Ella consoled the nurse who was upset that she had left him just before he died. I phoned his daughter as the identified contact person. She cried, clearly surprised and distressed. She said her mother was just then getting his clothes ready, preparing for him to come home that day.

They arrived about two hours later. His wife in a wheelchair, crying. She was afraid to go into the room where he lay. I encouraged them all to enter the room. Mrs W lifted herself out of the wheelchair by his bedside, leaning over him, almost lying on him, weeping, hugging him, talking to him. My heart was breaking now.  The image of this small lady leaning over this man, her husband of 65 years.

I could not understand why I was so upset after 22 years in Palliative Medicine. I think it is because in acute medicine, unlike Palliative Medicine, you are so close to the front line; because in acute medicine you do not have your Palliative Medicine armour on. The chaos and uncertainty, the surprise factor of acute medicine, render me exposed and vulnerable. “Palliative” comes from the word “pallium” to cloak or shield. But now I know “pallium” used to shield me.

The poignancy intensified. I sent them a card offering my condolences. Mrs W responded, phoning me to request a meeting. “Oh dear,” I wondered ... A week later we sat again in the same room where she had hugged her dead husband. Mrs W said “The nurse phoned me that morning, said S wanted to speak to me”. As the nurse brought the phone to his bedside, “the battery died”.  So they never spoke. She presumed he wanted to tell her to bring in his clothes, that he was going home. So she started to get his clothes ready. Now she wonders did he want to say he loved her. “Is that what he wanted to say…?”

Mrs W thanked me. They all thanked me. My heart was breaking. Acute Medicine – no place for the faint hearted.

Would repeated encounters like that with Mr and Mrs W wear me out and lead to compassion fatigue? Not necessarily. In this story there is a mutuality in the exchanges between us, a give and take, an ebb and flow, an emptying and a filling. I am called to be aware, be alert to all that is happening to the patient, the family and to myself. In that space of being fully present, I am emptied and I am filled.

“When we walk to the edge of all the light you have and take that first step into the darkness of the unknown, you must believe that one of two things will happen: There will be something solid for you to stand on, or, you will be taught to fly.” “Faith” by Patrick Overton - “The Leaning Tree”

Dr Sinéad Donnelly is a Palliative Medicine and Internal Medicine Physician in Wellington.

Compassion as a moral duty

Gerard Aynsley

In his extensive study, 'A Theology of Compassion', Oliver Davies describes compassion as "the voluntary sharing of the fate of others in order to be present with them in the time of trial"¹ and as involving the "interweaving of self and other"². Also, drawing on the work of Martha Nussbaum, he points out the three-fold nature of compassion as a combination of the cognitive (seeing another's distress), the affective (being moved by it) and the volitional (doing something about it)³. These descriptions help place compassion within the realm of ethics – as a response and quality that ought to be exercised and displayed. Placing 'compassion' within an ethical framework is required if compassion is to be regarded as an important and necessary force in our lives. The alternative is to regard compassion as simply a psychological disposition, or, worse, entirely subject to circumstance and chance and, as such, excuse ourselves from responding with the proper kindness to another person's suffering.

In recent years there have been numerous studies that show up the fickleness of human behaviour; proposing, for example, that being in a hurry or not, or having a little bit of good luck will have more bearing on behaviour than ethical principles⁴. Similarly, Auckland-based psychologist, Nathan Consedine, takes the rather pessimistic view that compassion is "part of our evolved psychological make-up" and that "caring for people who don't deserve it is inefficient from an evolutionary perspective" (North & South, September 2015, p.61). It may well be that human beings are fickle, but to excuse the requirement for compassion on the grounds of temperament or circumstance seems to diminish something important about our humanity. Human beings are moral beings and, as such, have the capacity to rise up to what ought to be done. This is what ethics teaches us.

The idea that compassion is an ethical characteristic has, traditionally, been rejected. It was seen as too closely aligned to our emotions, and so too irrational. Plato considered feelings of pity to be undesirable and the Stoics saw pity as "a weakness of the mind"⁵. Kant insisted that acting from sentiment – even if it leads one to do a good deed – has no moral worth, and Nietzsche takes things a step further, regarding compassion as a vice, believing that "suffering is spread through compassion"⁶. Nevertheless, that we have a duty of care for others is supported by most ethical traditions and with some rethinking it is possible to construct an understanding of compassion – incorporating the cognitive, affective and volitional dimensions – as an important ethical category.

First, as noted by Davies, there needs to be a place for affectivity. There have been some important recent works that develop this theme. Justin Oakley, for example, in "Morality and the Emotions"⁷explains how the affective dimension does have a place in moral decision-making and because of the relationship between our affective and cognitive capacities we can exercise some control over our emotions.

Secondly, there needs to be a rethinking of the self; a "radical de-centring of the self"⁸and a letting go of a notion of the moral agent who is traditionally "presented as though they were continuously rational, healthy and untroubled"⁹. This includes abandoning the notion of the 'sovereign' self who sees him/herself as the source of all knowledge and the source of the moral law and action. From this 'superior' stance the other person is too easily seen as a mere 'object' of my pity. Compassion, on the other hand, requires of me to begin with the other person in his or her uniqueness and to enter into their vulnerability; all the while recognizing that it is their suffering and not my own. As Alasdair McIntyre points out, human vulnerability goes hand-in-hand with our dependence on each other and this is the moral landscape in which compassion is experienced¹⁰. This shift in thinking about the self and the other is required if compassion is to be a legitimate ethical standpoint.

To take the other person in their vulnerability as the starting point is to take an imaginative step and so, as David Hume puts it, "to feel a sympathetic motion in my breast, conformable to whatever I imagine in theirs"¹¹. The imagination enables us to grasp what is before us and to also 'see' more than what is materially present – e.g., we may first see a person drop a pile of papers, but the imagination enables us to also 'see' the person's distress and so 'see' the situation as one that requires a compassionate response.

Finally, ethics involves the conscious decision to transcend inclination and to do what is right. To be moral is to rise up and do what is right regardless of whether or not we like the person who requires our help, or we are in a hurry, or whether or not we happen to be having a good day. Unless compassion is something we aspire to as a matter of moral obligation we will never be capable of responding with the kindness and care that is so often needed.

Rev Dr Gerard Aynsley is a parish priest in the diocese of Dunedin. He holds a PhD in philosophy from Monash University in Australia.

----------------------------

[1] Oliver Davies, A Theology of Compassion (London, SCM Press, 2001),12

[2] ibid. xix

[3] ibid. 18

[4] Google, for example, “The Good Samaritan study” or “The dime in the phone booth study”.

[5] cited in Oliver Davies, 235

[6] cited in Oliver Davies, 239

[7] Justin Oakley, Morality and the Emotions (London, Routledge, 1992)

[8] Oliver Davies,17

[9] Alasdair McIntyre, Dependent Rational Animals (Chicago, Carus Publishing Company, 1999),2.

[10] Alasdair McIntyre, Dependent Rational Animals

[11] David Hume, A Treatise of Human Nature (Oxford: Clarendon Press, 1967), 386.

A World Cleansed of Imperfections?

This article by Max Wind-Cowie dismantles the ‘choice’ argument used by those who promote abortion and euthanasia for the reason that individuals should have the right to decide for themselves. He suggests that ‘what starts out as a ‘right’ soon becomes an expectation and the ‘tradition of the sanctity of life is replaced with a new tradition of utilitarian eugenics.’

Available online at: http://www.catholicherald.co.uk/commentandblogs/2014/08/21/dawkins-has-done-us-a-favour-by-highlighting-how-dangerous-our-culture-of-choice-really-is/

Eugenics wasn’t always a dirty word

Calum MacKellar names some famous English and Scottish figures from the past that promoted eugenic policies. He reflects on past eugenic practices and how it took only a small shift in attitude about ‘worthy lives’ to lead to the crimes of Nazi Germany. He warns us to remain vigilant and to uphold and protect ‘the important inherent equal dignity and value of all human beings.’

Available online at: http://www.mercatornet.com/articles/view/eugenics_wasnt_always_a_dirty_word

The Troubling Persistence of Eugenicist Thought

Michael Dougherty describes both early and more recent eugenic ideas in the United States, noting the how hard it might become for parents of Down Syndrome babies to allow these children to be born. He suggests the ‘new eugenics’ is unlikely to be overtly racialist like in the past, but will come to us in terms of ‘quality of life’ and ‘health and safety’.

Available online at:http://theweek.com/article/index/268986/the-troubling-persistence-of-eugenicist-thought-in-modern-america

Eugenics in New Zealand

Hilary Stace

Eugenics is a pseudo-science concerned with improving the quality of the human race. It underpins the discrimination of those who are disabled or culturally or ethnically different by those who consider themselves to be morally and physically superior. Eugenists borrow the language and concepts of science, particularly evolutionary theory of ‘survival of the fittest’, to legitimise this discrimination. The flawed hypothesis underpinning eugenics is that some individuals, families and population groups are tainted with hereditary physical and intellectual defects causing consequent moral deficiency, making them less ‘fit’ than others.

Eugenic attitudes and public policy were particularly significant in the early decades of the twentieth century in many countries, including New Zealand. A common perception in Britain and much of the ‘western’ world at the beginning of the twentieth century was that evolutionary theory of 'survival of the fittest' had not caused society to rid itself of problems related to crime and poverty. Being part of the British Empire, it was not surprising that the eugenic debate here was influenced by the British one.

In the nineteenth century many migrants left Britain and Europe for a better life in New Zealand. Although infectious illness and accidents were common, disability was unwelcome as it conflicted with the ideals of a new society. Disability support was left to the benevolence of families or groups providing charitable aid. The immigration acts that restricted people from China (an ‘unfit race’) also banned ‘cripples, idiots, lunatics, infirm, blind, deaf and dumb’. The 1882 Imbecile Passengers Act required a bond from the person in charge of the ship before one of these ‘undesirables’ was discharged, and the 1899 Immigration Restriction Act went further banning the idiot, the insane and the contagious.

By the beginning of the 20th century the middle class white birth rate was dropping in New Zealand. The blossoming ‘scientific’ justification of eugenics was taken up by both white liberals and conservatives concerned about consequent fears of losing their moral supremacy. In 1903, W. A. Chapple, a Liberal MP in New Zealand and later in Britain, published an influential booklet, The fertility of the unfit. Sterilisation of the wives of ‘degenerate’ men was his preferred option for reducing the numbers of ‘the unfit’. His pamphlet was welcomed by many prominent men and women. Eugenics became a political cause. ‘Negative’ eugenists sought to limit fertility while ‘positive’ eugenists supported interventionist pro-natalist policies to increase population ‘fitness’.

The 'unfit' encompassed a whole range of 'other' including the following groups described in the language of the time: alcoholics, imbeciles, illegitimate children (and their mothers), prostitutes, criminals, the feeble-minded, lunatics, epileptics, deaf-mutes, the unemployable, the tubercular, the immoral (e.g. homosexuals), anyone from another race, those with incurable diseases such as Syphilis or tuberculosis, and even ‘mouth-breathers'. What they had in common was that they were all 'other' and were apparently breeding faster than the eugenists. Eugenists constructed a monster that gobbled up taxes, and provided images of the 'unfit' for people to measure themselves against.

French-born religious sister Suzanne Aubert had a personal experience of disability and was one of the few to speak out against eugenics in New Zealand. She founded her Home for Incurables in Wanganui in 1899 and, in 1907, opened her first Home of Compassion for all ‘needy’ or disabled adults and children in Wellington.

The 1907 founding of the Plunket Society with its slogan to 'help the mothers and save the babies’ both reflected and propagated eugenic fears about the ‘unfit’. 'The destiny of the race is in the hands of the mothers', wrote founder Truby King. He believed the body was a closed system with a limited amount of energy. The education of girls, in anything other than domestic skills, used up their energy and could make them unable to breed or breastfeed. From his observations of patients as Superintendent of Seacliff Asylum near Dunedin he believed mental degeneration was caused by poor mothering. If only women could be taught the 'science' of mothering the racial decline of the Empire could be arrested. Instead they would breed fit soldiers for the Empire. The less than perfect health of many soldiers enlisting in the First World War increased the Society’s influence.

The Plunket Society popularised the prescriptive ideology of a regime designed to build 'character'. It involved four hourly breast feeding (but not at night), toilet training from two weeks of age, fresh air, rest and no 'spoiling' as playing with or cuddling the child could weaken 'his' character.

But the Plunket Society was just one of many reactions by New Zealand society to those whose difference threatened the majority. Fear of the unfit and wishes to contain the disabled and undesirable had already led to New Zealand’s first public ‘lunatic’ asylum in Karori in 1854. A larger one on the hills above the town of Porirua opened in 1887 and by 1896 its site covered 100 acres. Typically for the time, the Porirua asylum mixed several categories of ‘other’: those with mental health issues, intellectual impairment, alcoholics, elderly and homeless people. For decades, these ‘inmates’ provided large captive communities for doctors and specialists to practice theories and interventions.

Some groups, such as those with vision and hearing impairments, were seen as ‘habilitable’, meaning they had potential as worker citizens if they could be taught to speak or otherwise function in the ‘fit’ world. Hence the establishment of residential schools which separated those with potential from their suspect families.

But certain types of intellectual impairment continued to be linked with ‘immorality’. Girls’ and boys’ homes and farm schools were founded mainly to keep the genders apart and prevent criminality, deviant behaviour and, above all, reproduction. The 1911 Mental Defectives Act carefully classified groups of ‘other’ into a hierarchy of idiots, imbeciles and feeble-minded. Special schools and special classes were provided for those deemed educable. The school medical service was founded to identify ‘defective’ children so they could be sent to the appropriate institutions and the 1914 Education Act made it obligatory for parents, teachers and police to report ‘mentally defective’ children. A residential school for ‘feeble-minded’ girls, Salisbury, was opened in Richmond, near Nelson in 1916.

The new science of IQ testing was enthusiastically embraced by the authorities when it became available. Labels such as high functioning, low functioning and mental age all added to the taxonomy and helped to classify and assign those so assessed.

In the 1920s the government consulted the public in two separate inquiries. A Committee of Inquiry into Venereal Disease reported in 1922 and the Committee of Inquiry into Mental Defectives and Sexual Offenders reported in 1925. The first inquiry concerned the role of 'feebleminded' women in infecting men and causing debauchery and corruption. The second considered 'mental defect' and its link with immorality, as well as prevention and treatment. Segregation, sterilisation, castration, and marriage certificates were remedies suggested for the perceived problems.

A short-lived Eugenics Board was established in 1928 to keep a register of 'mentally defective persons'. Theodore Gray was Acting Inspector General of Health and the Board was under his control. A member of the public wrote a ‘Mother’s Lament’ expressing concern at the proposed travelling clinics which would examine and classify ‘mentally defective' children

"Oh Mother, save me from Dr. Gray

'Cause teacher says he's coming to-day

And if I'm stupid he'll take me away. Oh, Mummie save me from Dr. Gray!"

"I cannot save you, my little child,"

His mummie said and her eyes were wild.

"You belong to the State, you're no more my child!

But Oh, my darling, don't stupid be

Or he'll say we've tainted heredity,

And must be eradicated - you and me!"

There was some discomfort in the community over the Inquiry's recommendations. Most of the more extreme suggestions, such as sterilisation of, and banning marriage with, the 'mentally defective' were dropped from the Mental Defectives Bill of 1928, much to the anger of those like Nina Barrer of the Women's Division of the Farmers' Union. Barrer was an enthusiastic eugenist, using stock breeding metaphors for the perceived problems. She published a pamphlet in 1933, The problem of mental deficiency in New Zealand, where it is written: 'There is increasing in this Dominion a grave national danger that, from the material standpoint alone, is costing the country hundreds of thousands of pounds, while, from the racial or biological standpoint, it is menacing the purity of our national stock. The present depression and its consequent problem of unemployment have been the means of awakening more people to the fact of the increasing unemployable, and the alarming rate of multiplication of the mentally deficient'.

Support for eugenic policies was widespread globally so it was not surprising that in 1939 when a German father asked the state authorities to kill his disabled baby the request was granted. That was the start of the Nazi euthanasia policies. The Nazi doctors killed more disabled children, then the policy spread to other groups which threatened ‘racial hygiene’, including Jewish people. It is estimated that over 200,000 disabled people were experimented on or killed in what is known as the ‘silent holocaust’.

Following the Second World War and the establishment of the welfare state in New Zealand, overt support for eugenic public policy lessened. But many people, including children and adults with an intellectual disability (ID), remained a target of eugenic public policies with a network of state institutions across the country. Busloads of children were delivered to these isolated communities and other adults and children arrived in curtained-off, locked train compartments. Families were advised to not reveal the existence of their sibling for fear of this ‘bad blood’ scaring off prospective spouses. The ‘inmates’ were thus often forgotten by family.

But eugenic assumptions remain today and can be heard anew in calls for the sterilisation of people with disabilities and beneficiaries, pre-birth screening for conditions such as Down Syndrome and in the development of genetic technology. Official discrimination against groups such as refugees can also be considered eugenic.

Perhaps it is time for reflection about why this flawed hypothesis continues to influence public policy.

Dr Hilary Stace is a disability researcher and Research Fellow at Victoria University. She is the author of Gene dreaming: New Zealanders and eugenics Wellington: Professional Historians’ Association of New Zealand/Aotearoa, 1998.

HIV/AIDS in Africa: Hope in the midst of tragedy

An Interview with one of the founders of Open Home Foundation International

The Open Home Foundation in New Zealand was started by a Wellington couple who were looking for a different way of helping children in need. Ewen and Gillian Laurenson set up the first small ministry in 1977 which aimed to provide support for children based on the idea that children fared best in families. Built on the promotion of 'families helping families', they became a national organisation in 1986 and their model of care has expanded throughout New Zealand. It is now one of the Ministry of Social Development's largest independent providers of social services for children and families (Troughton, 2013) with an emphasis on a child-centred and family-focused Christian approach.
After an invitation in 1991 to visit India and assist there, Ewen and Gillian started the Open Home Foundation International, which now works in India, Romania and Africa. The Nathaniel Report was pleased to be able to interview Ewen recently and asked him about the International Foundation's work in Africa with families and children who had been affected by HIV/AIDS.
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The Foundation was first invited to Uganda in 2000, and later to Zambia and Rwanda. The Foundation agreed that it would assist in these countries, by 'standing with them', but would not provide a New Zealand kind of service. Its work in Africa was to reflect the Foundation's vision, described by Ewen:
Every child, regardless of where they live, has the right to belong to a family and community where they are safe, loved, have enough to eat, that they can go to school, have access to health care and know they are loved by God.
In Ewen's words, the Foundation is non-denominational but is Christ-centred and prayer is at the heart of their work. While the basis of the Foundation's work is represented in its vision, the expression of its work differs from place to place depending on local circumstances. The invitation to be a partner in Africa came from a Ugandan pastor who saw the Open Home Foundation pamphlet at an Auckland church. He invited the Foundation to come and help with the enormous numbers of children who had been orphaned as a consequence of the deaths of their parents from AIDS.
HIV/AIDS has had a devastating impact on communities in Sub-Saharan Africa countries. The occurrence of the HIV virus in Uganda as well as other places was exacerbated by a number of local factors that led to appalling living situations for large numbers of families and especially for children. Polygamy was common and prior to the advent of cheap anti-retroviral drugs, once the husband had acquired the virus, all his wives would become infected. Upon the death of their parents, a common occurrence, children were often left to the care of an older brother or uncle, who was likely to have his own family to provide for. The children's care was often undertaken as an obligation, and the children "tolerated rather than loved". In these straitened circumstances there was little chance the children could attend school or receive adequate health care. The impact on families, and especially children, has had far reaching consequences for millions and will take generations to overcome: "A society suffering a profound unexpressed grief."
In 2012 there were 25 million people of this region living with HIV, of whom 2.9 million were children. There have been significant efforts to tackle the AIDS epidemic using a range of approaches, such as the ABC campaign, education about AIDS, the cheaper availability of anti-retroviral drugs and a global initiative (the United Nations Millennium Development Goal of 2000) to halt and begin to reverse the AIDS epidemic. The prevalence of HIV/AIDS in the three countries that the OHF first visited in 2000, Uganda, Rwanda and Zambia, shows that while there has been a concerted effort to reduce the rates of prevalence and to manage the disease, it remains a critical health and social issue.
While the number of new HIV infections continues to fall globally (declining by 50% across 26 countries between 2001 and 2012, and between 25% and 49% in an additional 17 countries ), HIV prevalence in Uganda has been rising since its lowest rate in 2006 , evidence that a degree of complacency has set in in some areas. In Zambia the prevalence rate of 13% (reported as being higher in urban areas) has not changed since the mid-nineties ; and in Rwanda, the relatively low prevalence rate of 2.9% masks the unequal impact of the disease as the prevalence rate for some of the most at risk groups is as high as 15% .
Overall the impact of HIV tends to fall unequally on women. For example, for Zambian women aged 15-24, the prevalence rate is twice that of men in this age group and in Uganda the prevalence rate for women is 5.4% compared with 2.4% for men. There are 170,000 children in Zambia estimated to be living with HIV and in 2009 there were 690,000 AIDS orphans3. In Uganda, in 2011, there were estimated to be 1.1 million children orphaned by the AIDS epidemic2, and in Rwanda in 2012 there were 120,000 AIDS orphans. The prevalence rates for women are higher for a number of reasons, including women's greater exposure to sexual violence, the refusal by their husbands or partners to use condoms, and the fact that women marry and become sexually active at younger ages than men, often marrying men who are older and may have already had a number of sexual partners.
Without doubt, the introduction of anti-retroviral drugs, and particularly the earlier access to and the reduced cost of treatment, has contributed to fewer AIDS-related deaths. These subsidised anti-retroviral drugs have meant that adults between the ages of 20 to 40 or more years, the 'provider generation' who had previously died or were incapacitated by HIV/AIDS, are not just surviving but are able to provide for their children. When the children are better supported and are freed from their caring roles, they are better able to access education.
Ewen's own experience of grief after his father died when he was 12 years of age, has enabled him to relate to the grief carried by these children, many of whom had lost both their parents and other close family and friends, as well as experiencing a 'loss of place' necessitated by a move to other areas. In the main, and in the absence of proper support, the children were simply expected to 'get on with it'. Their grief was often exacerbated by neglect, rejection and abuse and, for girls, by early sexual experiences not of their own making.
In the early 2000s, the focus of the Ugandan government's ABC (Abstinence, Be faithful, use a Condom) programme, was on the 'Abstinence and Be faithful' aspects, something that contributed to the drastic reduction of infection rates in Uganda when compared with other countries. Ewen, reflecting on how this approach conflicts with western notions of freedom, especially freedom of sexual expression, notes that many women, especially those who are victims of violence and rape, have limited control over their sexual relationships. Ewen has always been a strong supporter of the Abstinence and Be faithful approaches; they make sense in light of the evidence of reduced infection rates and have a particularly good chance in the places where Christianity is strong.
In addition, other measures have been introduced to resist the cultural forces which have exacerbated the HIV/Aids tragedy in Africa, particularly the domination of women by men . Ewen noted that girls are much less likely to be at risk if they are at school and being educated. He has also observed that 'women and girls are the cultural changers'; some education and a small amount of money can feed on their hope for a better life for their families. He believes that the education of girls is the key to lifting the family and community out of poverty. Meanwhile OHFI has conducted training seminars on the care and protection of young children, encouraging attendees to look beyond their own children, out to the needs of other children who are at risk.
In spite of the poverty and hardship suffered by the people of Uganda, Zambia and Rwanda, Ewen was constantly inspired by the expressions of hope there. He found the way the people expressed their love and hope through song exhilarating, and thought that their singing and their community orientation, as well as their openness to things of God were gifts they had that we had lost in New Zealand.
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In Rwanda the OHFI has partnered with a group called PHARP (Peacebuilding, Healing and Reconciliation Programme). PHARP members identify key women in a community, encourage the education of these women in a variety of life skills such as hygiene and diet, and assist them to develop small businesses. They also teach them about conflict resolution and reconciliation, focusing particularly on those who have previously harmed them. A number of the women had been grievously harmed by the genocide and the murder of some of their own families. As a consequence of the genocide, the rapes and the civil and political unrest for years afterwards, there are many orphaned, vulnerable children within every community.
PHARP asked if OHFI would come in and help them with training, talk to the people about the care and protection of children, and work with them to develop a programme for the children. They also asked if OHFI, working alongside local people, could help to develop a project that would create sufficient funds to support the schooling and health care for the children. As a result OHFI became involved with a community in Gicumbi.
The key contact they worked with there had lost his wife and children and forty members of his family to the genocide. He introduced Ewen to his small church where there were fifteen women who had HIV/AIDS, along with some of their children. Towards the end of the service another group of about fifteen women arrived from different churches. All were infected with HIV/AIDS and they came together once a week, spending some time together, praying, listening to one another, and providing support and encouragement to each other. Because of their impoverishment, none of the children was able to go to school or get the health care they needed.
Ewen described the scene in the church: "I always remember, these women stood and sang, actually they didn't just sing, they danced and sang. I asked for an interpreter, and it was really a song of love and hope and forgiveness and of a determination to make a better life as much as they were able to." Many of these women had contracted HIV/AIDS while being raped and had subsequently passed on the virus to their children. "So they'd been really traumatised. I was so taken by the suffering of these women, and yet by the faith and love and the hope that they were expressing." Afterwards, Ewen learned that they would love to be able to start a 'pig project' with the aim of breeding pigs.
When asked by the Wellington Cenacle Sisters for suggestions about a Christmas gift they could make, Ewen told them about the women of Gicumbi. The Sisters' then contributed to the purchase of eleven piglets – ten sows and a boar, and the OHFI undertook to pay a veterinarian to provide the local women with training in the care of the pigs. Subsequently 11 families were selected to receive the pigs; they were successful in caring for and breeding the pigs and handed on a quarter of each litter to another family.
The project was such a success that, when Ewen last visited, the group had grown to about 60 families, all owning pigs. Their children were all attending school and they were able to afford health care for their children, including the all-important anti-retroviral drugs which had been unaffordable before this project started. As this project has grown, again with money provided from New Zealand, the community has been able to purchase land, and they now plan to set up a communal piggery which will be used for the benefit of their more vulnerable children. Because of this project at least 200 children now have better lives and can look forward to a better future.

Ethical challenges in advance care planning

A Submission to the National Ethics Advisory Committee

In New Zealand the National Ethics Advisory Committee (NEAC) has developed a draft consultation document exploring the ethical challenges in advance care planning encountered by health professionals. The intention of the consultation document was to further explore these challenges. The Nathaniel Centre responded with a submission to NEAC, which is summarised here.
For further information on advance care planning readers are invited to read the article "The Last Word: The Catholic case for advanced directives", in Issue 35 of The Nathaniel Report.

Introductory comments
We strongly support the broad concept of advance care planning understood as "a voluntary process of discussion and shared planning for future health care" (NEAC Draft for Consultation, p.2) . We acknowledge that healthcare professionals are an integral part of the process of creating an effective advance care plan, but we believe that the document takes an overly narrow approach to the issue by defining it as essentially a process "between a person and health professionals" (p.2).
We advocate a broader understanding of advanced care planning and wish that the long term New Zealand strategy encourage persons to reflect on decisions about care and treatment at the end of life before they become chronically ill. As Daniel Sulmasy notes: "There is almost a moral imperative for people, realising that they very well might die in a state of mental incapacity and aware that each is the judge of his or her own limits, to execute advance directives in order to assist those who will make decisions for them." At the same time we recognise that advance care plans are not a panacea for the complexity of end-of-life decisions.
The process of planning for future health care should not be limited to a discussion between a person and their key health professional. This assumption reflects a particular western cultural perspective which gives undue emphasis to the person as an autonomous rational individual rather than an interconnected and interdependent person who is part of a community. Secondly, even within this perspective, we believe it is not best practice to adopt a process that centres advance care planning primarily on the person and their health professional. This can foster a fragmented approach to the care of the person, resting on a narrow view of health to the exclusion of other dimensions of well-being. We advocate taking a more holistic approach that includes addressing cultural, family and religious or spiritual needs.
Feedback on draft consultation
 The focus on the health professional reflects a too narrow view of health and well-being, and raises the potential for various conflicts of interest to arise. The health professional may exert significant influence over their patient and the direction that the planning takes; they are in a position of advising a person about the desirability or otherwise of refusing future treatments which they would otherwise be legally obliged to provide. They are, practically speaking, the 'gate-keepers' for precious and increasingly scarce health care resources.
 The practicalities of facilitating a thorough and ongoing robust process of advance care planning: Doctors work under extreme time pressures and fatigue and stress could easily affect the quality of the planning process. A good process requires space and time and therefore adequate resourcing. Lack of resourcing becomes a serious ethical issue.
 Involvement of family members or others in the process: There are times when people might need protection from their families' involvement. For a variety of reasons including their own feelings of inadequacy or an inability to provide care and support, family members might coerce the patient into a decision that they would not otherwise make. Aged Concern notes that 80 percent of elder abuse is carried out by families.
 There is only minimal reference to New Zealand's multicultural population. The premise of the draft consultation reflects largely Western individualistic notions of decision making which may not be viewed as appropriate by some people. In cultures where individuals are viewed as enveloped in connections to their families, communities, land and ancestors, the advance care planning approach as laid out in the draft consultation offers very limited arrangements and may even be an alienating experience. This will require much broader consultation and reflection.
 There are ethical issues generated by the confluence between personal choice and social and cultural context. All decisions are made in, and are shaped by, our context. In a society where the elderly are experiencing greater social isolation and where there is a view of the infirm and disabled as a 'burden' on family and society, a person's choice may reflect a societal notion that they have a moral responsibility to accept certain options, including limiting their care. This area also needs more reflection.
 The draft consultation notes the assumption of competence in the Code of Health and Disability Services Consumer's Rights. However, because of the particular vulnerability of certain patients (such as children and adults who may have diminished competence) who wish to formulate an advance care plan, there needs to be additional provision to ensure the full participation in the decision-making process of those deemed to be of 'diminished competence' or 'not competent'.
 We approve of advance care planning as "voluntary" but are concerned there is some evidence that such plans are being seen as a pre-requisite for acceptance into some aged care facilities (p.5). We strongly affirm the position that any decision by a person to decline to take part in care planning should not adversely affect the care and treatment they receive and that they should not be pressured or coerced into making or documenting advance decisions (p.7).
 We agree with the document's concern about placing too much emphasis on the 'plan' itself rather than the 'process' of planning. This could unwittingly lead to a minimalist 'tick box approach' as recently evidenced in the United Kingdom with the Liverpool Care Pathway.
 Advance care planning should be seen as an ongoing conversation and needs to be regularly reviewed and updated (p.4). The language used in this document and in promotional and educational material should reflect a focus on 'planning' rather than 'plans'. The terminology used needs greater consistency, clarity and precision.
 Our preferred approach to advance care planning is that a proxy be nominated by the patient, someone who knows the patient's values and wishes and with whom they have discussed their wishes on a regular basis. This typically results in an oral plan, or a combination of oral and written. We also favour a less-specific form of plan as discussed in the draft consultation (p.4). A person's preferences change as they cannot foresee how they might react to a particular situation, and a particular health-related experience can re-shape desires and preferences about care and treatment.
 We recognise the importance of health professionals being alerted to the existence of an advance care plan (p.11), whether written, oral or a combination, and the advance care planning process must take account of the fact that a plan may exist in any one of these forms. The existence of a plan on a data base must not become a substitute for ongoing discussion between the patient and/or family and health care team. An undue emphasis on gathering written advance care plans and storing them on a centralised database could militate against the need for flexibility and continuing review and discussion.
 We think it is particularly important to reflect on how the process of advance care planning could be integrated with the legal provisions for appointing an Enduring Power of Attorney
 Organ Donation: A strategy to implement advanced care planning that encourages persons to reflect on decisions about care and treatment before they become chronically ill provides an opportunity to prompt persons to reflect on their willingness, or otherwise, to become an organ donor. This may well assist in increasing the number of organ donations available.

Concluding Comments
We support encouraging persons to reflect on how their personal values shape the sort of care and treatment they want at the end of their life. We think it is critical that there is greater awareness of the context in which we live and which helps shape people's decisions and wishes. Without such reflection, advance care plans could unwittingly become a vehicle for imposing societal biases and prejudices about quality of life and the 'burdens of care' above authentic personal choice and the respect and care due to all persons by virtue of our dignity as humans.
We are concerned that the process of planning be broader than the person and their health professional and believe it is preferable for persons, having consulted with their health carers, to opt to give their loved ones or a significant 'other' substantial authority to interpret their wishes in whatever form they have been expressed. We advocate for health professionals to talk to a person who knows and has been selected by the patient rather than refer solely to paper or electronic records. However, the role of a 'proxy' also has its limits because patients frequently fail to discuss their preferences.
To conclude, we believe in a process that emphasises the ongoing nature of planning and review and that outlines specific directions rather than one that focuses on the completion of written plans that try to anticipate specific situations. This emphasis is also likely to be more inclusive of different cultural perspectives and values.
December 2013

Staff of The Nathaniel Centre

The reluctant caregiver

New York Times columnist Paula Span uses the term 'reluctant caregiver' to describe people who continue to care for someone even when they do it grudgingly. She concludes that reluctant caregivers probably deserve more credit than most, because they are not getting back the warmth, laughter, tenderness or sometimes even gratitude that others do, while they keep on doing the tough work.

Available online at: http://newoldage.blogs.nytimes.com/2013/02/20/the-reluctant-caregiver/?_r=0

The reluctant caregiver - a challenge for society

Anna Holmes

There is a paradox about caring – caring is supposed to arise out of compassion or a universal love of others but often is done out of a sense of duty. Paula Span writes well in “The Reluctant Caregiver” about care done out of duty not affection. Reluctant caregivers may be family, friends or neighbours as well as professional carers. Thanking a reluctant caregiver can make them feel ashamed because care is done from a sense of duty rather than compassion. I wonder if reluctant caregivers are compassionate and do not recognise it. Caring as a moral obligation can still be compassionate.

In New Zealand the numbers of those aged over 65 years will double to more than a quarter of the population over the next 50 years and the demand for caring will also increase. Technology will help with practical issues. There are already mobile apps that send messages to remind people to take their medications, or remind them to eat, or attend appointments. There are even small robots that can follow patients around and call for help when required.  However, these cannot meet the human need for connection and community.

There are various cultural and social dynamics at work that are making the provision of compassionate care more difficult. When visiting a rest home recently I asked some of the residents what had changed in New Zealand society since their youth. They replied: “There’s been a loss of community.”  “People are less caring now.” “It’s all the divorces and people living together so relationships don’t last.” “Families don’t live in the same place anymore.” “Our children are so busy with work and their families they haven’t time to see us.”

To these I would add the necessary increase in numbers of women working, the increased cost of education and training, smaller families and increased economic constraints around the help available to the frail. Regional health authorities reduce available funding for care in the community because funding complex technological medical care is seen as more important as it can be measured against ‘health targets’.

Over the past century, respect for the elderly has diminished in European societies. Various factors fuel a growing sense of ageism in these societies, particularly a shift towards individualism and materialism. Along with this is a lack of ethical reflection in policy. This results in older people being seen as consumers of goods without being contributors. It is as if the work, taxes, love and caring that they have contributed to society in the past has no value. It is not surprising that more elderly people consider themselves a burden.

As the number of elderly people increases, more New Zealanders who can afford it choose to live in retirement villages, which offer care at a price. They cannot provide the hope and connection of a multi-aged community and life often feels meaningless. They all too easily become ghettoes distanced from the rest of society. There is an urgent need to rediscover the place of elders as useful, contributing members of society.  A number of recent studies have shown that volunteering and being connected are important factors in health and longevity. [1] The problem is how to connect a fragmented society into an organic whole.

It is ironical that ‘undeveloped’ societies are better at this. A Tanzanian woman, speaking to medical students said Tanzanian children have a duty to care for their parents, including sharing any money with them. The old are treated with great respect and honour for they are the living history of the people. They help where they can and are not seen as, and nor do they feel themselves to be, a burden. They carry the wisdom and tell the story of the community. This is also the traditional way kaumatua are regarded and treated in Maori communities.

In 48 years of medical practice I have seen far more compassionate caregivers than reluctant ones. There is a clear duty to ensure that any ‘reluctance’ caregivers experience is not exacerbated by a lack of physical, emotional, spiritual or economic support. As a start, how about a care giving allowance that is adequate to maintain family income? 

As a society we have a responsibility to ensure the weakest and most needy have good care and support. If we fail to do this it will not be surprising that the elderly and frail feel they are an unwanted burden and might be tempted or coerced to seek death rather than life.

Dr Anna Holmes has recently completed a PhD on Embracing the paradox : Spirituality in General Practice . She is a Clinical Senior Lecturer, Department of General Practice, University of Otago. Over the past 48 years she has practised medicine in student health, rural practice, as a medical manager in the regional health authority, and in palliative care. Her experience includes work in a number of different cultures.

Compassionate nevertheless – in praise of reluctant caregivers

Michael McCabe

Jesus said, “What do you think? A man had two sons. He went to the first and said, ‘Son, go and work today in the vineyard.’ His son answered, ‘certainly sir’, but did not go. He then went to the second son and said the same. But he answered, ‘I will not go.’ But later he thought better of it and went. Now which of these two did his father’s will? They answered, ‘the second son.’ (Matthew 21:28-32)

The parable of the two sons in Matthew’s gospel has similarities to the more familiar story in Luke’s gospel of the forgiving father. Although that parable is more commonly known as the story of the prodigal son, it is also a story about a reluctant caregiver – an older brother who stays at home, duty-bound to do the right thing, but completely consumed by anger and regret. In the Matthean parable the second son is up-front about his reluctance, “I will not go,” but does not let this fact preclude his helping out his father. Though reluctant, his presence makes a difference in the vineyard.

The reluctant caregiver referred to by Paula Span focuses her attention on the needs of her frail mother-in-law. There is a heroic quality about her care precisely because it is focused on the other rather than on the self. She may well be reluctant but she is actively involved in caring for her mother-in-law.

Contrast that with the jarring image of the retirement village resident who was dead for two weeks in his apartment before being found, or another man dead for a month in his housing complex all the while surrounded by neighbours. What might their story have been with the presence of a caregiver in their lives, even a reluctant one?

Illness and infirmity provides a backdrop where old wounds and unresolved conflicts return. These may or may not find a place of equipoise so that differences on many levels remain. Chronic illness, such as dementia or Alzheimer’s disease, not only destroys existing relationships but also possibilities for relationships that never existed or relationships that were defective and impoverished. Consequently, possibilities for mutual reconciliation become increasingly one-dimensional as the health of a family member slowly or radically diminishes. Even so, a focus on what is best for the patient can help find a way through this real sense of loss and disappointment, notwithstanding the pitfalls of paternalism or abandonment.

Much of ministry involves reaching out to the needs of the other from a position of having similar needs oneself. For example: the single woman at the heart of a parish or school community who is known for her wonderfully welcoming hospitality to the stranger or migrant, but who returns home to a lonely and solitary life; or the grandmother who spends her Sundays taking communion to the housebound and who has become an accepted part of these parishioners’ families even though she is denied access to her own grandchildren and has not seen them for several years; or the grandparents helping raise their grandchildren as well as caring for their own frail and aged parents. As one such person said to me recently, ‘when we got married 40 years ago this was not the retirement lifestyle we imagined we would one day be living!’

All of these caregivers, though reluctant to a greater or lesser degree, have the reach of compassion. This quality is easily lost, or at least under threat, when care of the vulnerable is commodified and commercialised or when communities and families become increasingly fragmented and isolated.

All caregivers minister out of their need and relational poverty but, by responding to real needs, they are helping to build communities of grounded faith and lived compassion. While they may well be reluctant and wounded healers, they are ministering nevertheless. To a greater or lesser degree the reluctant wounded caregiver dwells in every one of us highlighting our need to show gratitude for the wounded healers in our midst.

Simply put, all carers need to be reminded of the good that they do. Even when reluctant their kindness is a form of blessing, at a personal and communal level, as the late John O’ Donohue observes in his book Benedictus [2007:219]:

‘Perhaps we bless each other all the time, without even realizing it. When we show compassion or kindness to another, we are setting blessing in train. There is a way in which an act of kindness done becomes an independent luminous thing, a kind of jewel-box of light that might conceal itself for days or years until one day, when you are in desperate straits, you notice something on the floor at your feet. You reach for it and discover exactly the courage and vision for which you desperately hunger.’

Father Michael McCabe is Parish Priest of Our Lady of Kāpiti Parish, Te Whaea o Kāpiti.

Ethically Compromised Vaccines in New Zealand

Kerri Anne Brussen and Kevin McGovern

Ethically compromised vaccines are vaccines where the virus used in the manufacture of the vaccine has been cultured in a cell line developed from tissue grown from an aborted foetus. In New Zealand, an ethically compromised vaccine is the only vaccine available for Chicken pox (varicella), shingles (zoster), Hepatitis A, and rubella (which is part of the MMR - measles, mumps, rubella - vaccine). The poliovirus vaccine component of Quadracel, and Poliacel, is ethically compromised. However, there are a number of ethically uncompromised vaccines approved for use where the  poliovirus component is grown in African green monkey kidney cells (Vero). The rabies vaccine, Verorab, is not as ethically compromised and is the preferred option to Mérieux Inactivated Rabies Vaccine (MIRV) which is an ethically compromised vaccine. This article lists the ethically compromised vaccines available in New Zealand, and explains why they are ethically compromised. It also explains when and why vaccination should still be accepted even when the only available vaccine is ethically compromised.

Medsafe (New Zealand Medicines and Medical Devices Safety Authority) is responsible for the regulation of vaccines (and other medical needs). Through the examination of the globally available data they ensure that approved vaccines are safe for use by the New Zealand population. Vaccines are assessed in view of a risk balance benefit to the population.[i]

Immunisation against rubella and the polioviruses are part of the New Zealand immunisation schedule. Chicken pox, Hepatitis A and rabies although not part of the immunisation scheme have vaccines approved for use in New Zealand as these vaccines may need to be administered for protection against an occupational health risk or to prevent a health risk whilst travelling outside New Zealand.

Ethically compromised vaccine production

The virus used in the production of some vaccines is cultured in cell lines known as human diploid cells. These cells lines were originally developed from tissue from an aborted foetus. Vaccines are ethically compromised by this connection to abortion. The most commonly utilised cell lines are WI-38 (Wistar Institute) and MRC-5 (Medical Research Council).[ii]

WI-38 was derived from lung tissue from a three month gestation foetus in 1964.^[iii] The parents, living in Stockholm, chose to abort the child as they felt that they had too many children.^[iv] The MRC-5 cell line was derived from the normal lung tissue of a fourteen-week-old foetus that was aborted in 1966. This abortion from a twenty-seven-year-old mother was for ‘psychiatric reasons.’^[v] Stocks of cells are not replenished from repeated abortions.[vi]

Pontifical Academy for Life – Moral Reflections on Vaccines

In 2005, the Pontifical Academy for Life issued Moral Reflections on Vaccines Prepared from Cells Derived from Aborted Human Foetuses. Drawing upon the Catholic principle of cooperation in wrongdoing, this statement reaches three important conclusions. First, when a choice exists between one vaccine which is ethically compromised and another vaccine which is not ethically compromised, the Pontifical Academy states that we have a “grave responsibility” to use the vaccine which is not ethically compromised. Second, when only ethically compromised vaccines are available, the Academy calls on health professionals and health consumers alike to put “pressure on the political authorities and health systems so that other vaccines without moral problems become available.” Finally, until ethically uncompromised vaccines are developed, the Pontifical Academy for Life supports the use of even these ethically compromised vaccines so as to prevent serious health risks particularly for children and pregnant women.[vii]

Ethically Compromised Vaccines Available in New Zealand[viii]

Rubella

The rubella vaccine which is given as part of the combined MMR (mumps measles and rubella) vaccine and which is administered at fifteen months and four years is an ethically compromised vaccine. The virus for the vaccine is cultured in a human diploid cell line.[ix] Rubella is a highly contagious disease with transmission between people occurring through respiratory secretions. In developed countries the average number of transmissions from a single case of rubella is between three and eight. The ready transmission of rubella means it is very difficult to avoid the infection in pregnant women. Further if a pregnant woman is infected, the risk of infection of her unborn baby is very high (about 95%). Congenital rubella syndrome involves serious consequences for the unborn child, including congenital heart disease, cataracts and deafness, along with other problems.[x]

Vaccines manufactured with viruses cultured in non-human cell lines have not proved to be as effective or safe as the ethically compromised vaccines against rubella.[xi] Due to the serious health risks which would otherwise be faced by children, pregnant women and particularly the unborn children of pregnant women, the Pontifical Academy for Life encourages vaccination with rubella vaccine even though this vaccine is ethically compromised.^[xii]

Polio

Vaccination against polio is often carried out in combination with other childhood vaccines at six weeks, three and five months. A booster is given at four years of age.

There are a number of poliovirus vaccines approved for use in New Zealand that are considered ethically uncompromised. The polioviruses component of the Infanrix hexa/penta or Infanrix-IPV, and Boostrix-IPV all distributed by GlaxoSmithKline are grown in Vero cells, as are the polioviruses component in the Sanofi Pasteur vaccines, IPOL, Adacel Polio and Pediacel. However, the Sanofi Pasteur vaccines, Quadracel, and Poliacel contain polioviruses that have been cultured in the human diploid cell line, MRC-5. Thus, Quadracel and Poliacel are considered ethically compromised.Like Infanrix-IPV Quadracel vaccinates against diphtheria, tetanus, pertussis and the polioviruses. Infanrix –IPV can replace Quadracel and is not an ethically compromised vaccine.[xiii]

Although polio has been eradicated from all but three countries globally, vaccination must continue until global eradication and cessation of vaccination is declared.^[xiv] Poliovirus is spread by the faecal oral route and travellers must be re-vaccinated if travelling to an endemic country if they have not been vaccinated in the previous ten years. Previous generations remember the devastation of polio epidemics which are now essentially unheard of today. One in 200 infections leads to irreversible paralysis, usually in the legs.More extensive paralysiscan result in quadriplegia and in the most severe cases, bulbar polio, where the poliovirus attacks the nerve cells of the brain stem, reducing breathing capacity. Among those paralysed, 5% to 10% die when their breathing muscles become immobilized. Around 40% of people who survive paralytic polio may develop post-polio syndrome 15–40 years after the original illness.[xv]

Although there are a number of ethically compromised poliovirus vaccines available in New Zealand they are not routinely offered as part of the immunisation schedule. Infanrix-hexa and Boostrix-IPV which are not ethically compromised, are the two vaccines listed on the New Zealand immunisation schedule, thus the issue of being offered vaccination with an ethically compromised poliovirus vaccine is unlikely. However, if you are seeking to vaccinate with a poliovirus vaccine that is not on the schedule check the information available from the manufacturer to ascertain the cell line that the polioviruses were cultured in for the production of the vaccine. If the cell line is a human diploid cell line, an alternative ethically uncompromised vaccine should be accessed where possible.

Chicken Pox (Varicella) and Shingles (Zoster)

Varicella (chicken pox) vaccine is not part of the routine immunisation schedule in New Zealand, however it is recommended for children aged 12 months to 12 years.[xvi] McCartney and Burgess suggest that cost and the concern of adding another injection to the immunisation schedule have influenced the decision not to include chicken pox on the immunisation schedule in New Zealand.[xvii]

Varicella and zoster vaccines (combined or individual) approved for use in New Zealand are considered ethically compromised as part of the production process for the vaccines includes culturing in a human diploid cell line.[xviii] The potential for a latent infection^[xix] with varicella virus meant that much caution was taken during the development and trialling of the varicella vaccines as it had to be not only efficacious but also safe.^[xx]

Chicken pox is often thought of as a mild childhood infection, often more of an inconvenience. However, a varicella infection in a pregnant woman can be as devastating as a rubella infection. Intrauterine infection may cause a spontaneous abortion, premature delivery or stillbirth.^[xxi] Features of congenital varicella syndrome (CSV) may include: limb hypoplasia, neurological abnormalities, ocular anomalies, and low birth weight. Intrauterine or early postnatal infection can cause neonatal varicella infection. Infection manifested within five days before or two days after delivery is serious as it may become disseminated and a 20% mortality rate has been reported.^[xxii] Infection with varicella can also be more severe in adults than in children.[xxiii] The Pontifical Academy’s statement supported vaccination against rubella because of the serious health risks which would otherwise be faced by children, pregnant women and particularly unborn children. The same conclusion applies to chicken pox: it is recommended that immunisation with the varicella vaccine is undertaken even though this vaccine is ethically compromised.

Zoster (shingles) vaccination is recommended for persons in the 60-79 year old age group. Zoster vaccination is estimated to prevent up to 50% of the cases of shingles (re-activation of the chicken pox virus in later life), and two-thirds of post-herpetic neuralgia (damage to the nerves after an outbreak of shingles) in this age group. If shingles does occur, then the duration of the episode and the severity of the pain are diminished by up to 60% if a person has received the zoster vaccination. The risk for transmission of zoster to household contacts is approximately 15.5%.[xxiv] The need to be vaccinated with zoster should be discussed with a medical practitioner. Some people may decide to abstain from this ethically compromised vaccine if they can do so without posing a serious threat either to their own health or to the health of others.

Hepatitis A

Hepatitis A vaccine is not part of the New Zealand immunisation schedule. In New Zealand, Hepatitis A vaccination is recommended for chronic carriers of Hepatitis B and C, people with chronic liver disease and certain occupational groups particularly those that could be exposed to faecal material.[xxv]

Due to the difficulty in culturing and obtaining high yields of the Hepatitis A virus, vaccine production for Hepatitis A was modelled on the practice of producing vaccines in human diploid cell lines.[xxvi] Hepatitis A vaccines, are therefore ethically compromised as the virus is cultured in MRC-5 for vaccine production.[xxvii] The current vaccine has an almost 100% efficacy, which means that research into this virus is now a low priority and therefore does not attract the levels of funding of other Hepatitis viruses.[xxviii]

Hepatitis A is usually spread via the faecal-oral route, and transmission by an infected person to others in the home occurs easily. An infection with Hepatitis A can often result in hospitalisation. The death rate is approximately 3-6 deaths per 1,000 cases.[xxix]

Thus, immunisation with Hepatitis A vaccine is to be encouraged in circumstances where it is needed, and if travel is undertaken to an area of high prevalence or poor sanitation.

Rabies

The Rabies vaccine (Mérieux Inactivated Rabies Vaccine (MIRV)) manufactured by Sanofi Pasteur Pty Ltd is an ethically compromised vaccine grown in human diploid cells.[xxx] The rabies vaccine, Verorab manufactured by Sanofi-Pasteur is cultured on the Vero cell line. However, the initial culturing of the virus was in WI-38.[xxxi]

As death is always the outcome from a bite or scratch from an infectious animal, then vaccination with rabies vaccine should be encouraged for travellers who will be spending prolonged periods (i.e. more than one month) in rural areas of rabies endemic regions. Although the rabies virus used in the production of the Verorab vaccine was initially cultured on a human diploid cell the vaccine is manufactured using Vero cell line, thus it is considered the less ethically compromised of the two approved rabies vaccines in New Zealand and should be sourced and used if rabies vaccine is required. In the event of exposure to rabies, vaccination should never be refused even if only an ethically compromised vaccine is the only vaccine available.

Rabipur Inactivated Rabies Virus Vaccine, manufactured by CSL Biotherapies/Novartis Vaccines is available in Australia and is manufactured from virus grown in purified chick embryo cell. Thus, it is not ethically compromised.[xxxii] This vaccine is not available in New Zealand; however, re-evaluation of the available vaccines for rabies could consider the approval of Rabipur to provide an ethically uncompromised choice when providing rabies vaccination.[xxxiii]

Conclusion

In the statement of the Pontifical Academy for Life, the Catholic Church calls for the development of ethically uncompromised vaccines. Until such vaccines are available, however, the Church encourages vaccination to protect the general population and especially children, pregnant women and unborn children from serious health risks. Vaccination is a contribution to the best possible health care and wellbeing for all in our community.

The information in this article is subject to change as immunisation schedules may vary and alternative vaccines may be introduced. To check whether a vaccine is ethically compromised, consult the vaccine manufacturers’ product description. This should include the cell line or method of culturing of the virus in the vaccine. Any vaccine that is cultured in human diploid cells, most often MRC-5 or WI-38, or in a cell line described as human embryonic is ethically compromised.

Summary of Recommendations

Rev Kevin McGovern is a priest of the Rockhampton Diocese, Australia. Since 2007 he has been Director of the Chisholm Centre for Health Ethics in Melbourne.

Mrs Kerri Anne Brussen has a background in science with over 20 years in various laboratories. Her recent studies in theology provide a background to the intersection of science with Church teaching.

Eugenics, past and future

Ross Douthat

THE current issue of the Yale Alumni Magazine includes a portrait of Irving Fisher, a Yale economics professor in the 1920s and ’30s and a giant of his field. The author, Richard Conniff, takes note of Fisher’s prodigious professional accomplishments and his private decency in order to foreground the real subject of his article: the economist’s role as one of his era’s highest-wattage proponents of eugenics.

The American elite’s pre-World War II commitment to breeding out the “unfit” — defined variously as racial minorities, low-I.Q. whites, the mentally and physically handicapped, and the criminally inclined — is a story that defies easy stereotypes about progress and enlightenment. On the one hand, these American eugenicists tended to be WASP grandees like Fisher — ivory-tower dwellers and privileged have-mores with an obvious incentive to invent spurious theories to justify their own position.

But these same eugenicists were often political and social liberals — advocates of social reform, partisans of science, critics of stasis and reaction. “They weren’t sinister characters out of some darkly lighted noir film about Nazi sympathizers,” Conniff writes of Fisher and his peers, “but environmentalists, peace activists, fitness buffs, healthy-living enthusiasts, inventors and family men.” From Teddy Roosevelt to the Planned Parenthood founder Margaret Sanger, fears about “race suicide” and “human weeds” were common among self-conscious progressives, who saw the quest for a better gene pool as of a piece with their broader dream of human advancement.

This progressive fascination with eugenics largely ended with World War II and the horrors wrought by National Socialism. But while the West has discarded the theory of the eugenics era, the practice urged by Fisher and others — the elimination or pre-emption, through careful reproductive planning, of the weaker members of the human species — has become a more realistic possibility than it ever was in the 1920s and ’30s.

The eugenicists had very general ideas about genetics and heredity, very crude ideas about intelligence, and deeply poisonous ideas about racial hierarchies. They did not have, as we do, access to the genetic blueprints of individuals — including, most important, human beings still developing in utero, whose development can be legally interrupted by the intervention of an abortionist.

That access, until recently, has required invasive procedures like amniocentesis. But last week brought a remarkable breakthrough: a team of scientists mapped nearly an entire fetal genome using blood from the mother and saliva from the father. The procedure costs tens of thousands of dollars today, but the price will surely fall. And it promises access to a wealth of information about the fetus’s biology and future prospects - information that carries obvious blessings, but also obvious temptations.

Thanks to examples like Irving Fisher, we know what the elites of a bygone era would have done with that kind of information: they would have empowered the state (and the medical establishment) to determine which fetal lives should be carried to term, and which should be culled for the good of the population as a whole. That scenario is all but unimaginable in today’s political climate. But given our society’s track record with prenatal testing for Down syndrome, we also have a pretty good idea of what individuals and couples will do with comprehensive information about their unborn child’s potential prospects. In 90 per cent of cases, a positive test for Down syndrome leads to an abortion. It is hard to imagine that more expansive knowledge won’t lead to similar forms of prenatal selection on an ever-more-significant scale.

Is this sort of “liberal eugenics,” in which the agents of reproductive selection are parents rather than the state, entirely different from the eugenics of Fisher’s era, which forced sterilization on unwilling men and women? Like so many of our debates about reproductive ethics, that question hinges on what one thinks about the moral status of the fetus. From a rigorously pro-choice perspective, the in utero phase is a space in human development where disease and disability can be eradicated, and our impulse toward perfection given ever-freer rein, without necessarily doing any violence to human dignity and human rights.

But this is a convenient perspective for our civilization to take. Having left behind pseudoscientific racial theories, it’s easy for us to look back and pass judgment on yesterday’s eugenicists. It’s harder to acknowledge what we have in common with them. First, a relentless desire for mastery and control, not only over our own lives but over the very marrow and sinew of generations yet unborn. And second, a belief in our own fundamental goodness, no matter to what ends our mastery is turned.

This article first appeared in the New York Times on 9 June 2012.

Reprinted with permission.

©2012 The New York Times

(Distributed by The New York Times Syndicate)

Ethically compromised vaccines and Catholic teaching

Kevin McGovern and Kerri Anne Brussen

Ethically compromised vaccines are vaccines where the virus used in the manufacture of the vaccine has been cultured in a cell line developed from tissue grown from an aborted foetus. Vaccines are ethically compromised by this connection to abortion. Within the Catholic Church, the Pontifical Academy for Life has called for research and development of alternative vaccines which are ethically acceptable. Until alternative vaccines are developed, it has also accepted the use even of these ethically compromised vaccines in order to protect children, pregnant women and the population as a whole from the risk of contracting serious disease.

Vaccination and the Catholic Church

It has been alleged that Pope Leo XII (1823-29), stated, "Whoever allows himself to be vaccinated ceases to be a child of God. Smallpox is a judgement of God, the vaccination is a challenge toward heaven." While this text is often attributed to Leo XII, there is no official record of the comment. An article by Keefe attempts to track the origin of the statement. It concludes that Pope Leo XII did not say this, but that it could at the most represent his views when he was a cardinal.

Since this time there have been many affirmations from the Vatican supporting vaccination and the development of new vaccines to combat the consequences suffered from many infectious diseases.

Vaccines

Vaccines are produced from either a weakened or killed form of the infectious agent. When a person is vaccinated, an immune response occurs, similar to that which arises with natural infection. Thus, immunity to a disease is acquired without experiencing the disease. Viruses for viral vaccines can be grown in a selection of cell lines. These can be Vero cells (derived from adult African green monkeys), or MRC5 and WI-38 cells (human diploid cell lines). The yolk sac or the allantoic cavity of chicken eggs can also be utilised for viral growth for vaccine production.

Vaccines available in New Zealand

Medsafe (New Zealand Medicines and Medical Devices Safety Authority) is responsible for the regulation of vaccines (and other medical needs). Through the examination of the globally available data they ensure that approved vaccines are safe for use by the New Zealand population. Vaccines are assessed in view of a risk-benefit balance to the population.

In 2011, the New Zealand government provided funding for eleven different childhood vaccines. Additionally, the influenza vaccine is provided to those aged sixty-five and over. New Zealand's level of immunisation has been described as 'mediocre'. Grant et al suggest that in New Zealand structural and organisational issues in a general practice setting could affect immunisation delivery. New Zealand does not have compulsory vaccination.

McIntyre et al suggest that in a pluralistic society compulsory vaccination is not an option. Vaccines fulfil the ethical criteria of a preventative measure in children. Justice and charity call parents to provide the best possible care for their child.

People also dissent against vaccination for different reasons. One of the major concerns is vaccine safety. The risks need to be weighed up against the benefits, and the risk of an adverse event is often much smaller than the health risks associated with the disease.

The use of animal products in vaccine production may influence whether vegans and vegetarians may vaccinate. Those of Muslim or Jewish faith may avoid products that include a pork derivative. Some Catholics have raised concerns regarding vaccines produced from viruses cultured on cell lines that were derived from foetuses aborted during the 1960s. They are concerned that by using these vaccines they could be complicit in co-operation with the original abortion from which the cell lines were derived.

Ethically compromised vaccines

Of the eleven vaccines that are part of the New Zealand childhood immunisation schedule only two vaccines fall into the ethically compromised category. They are: the rubella vaccine (part of the measles, mumps, rubella vaccine), as well as vaccines that contain polioviruses grown in human diploid cells as opposed to Vero cells. Other vaccines not on the New Zealand immunisation schedule that are classified as ethically compromised are: chicken pox, zoster (shingles), Hepatitis A, and the rabies vaccine.

Ethically compromised vaccines are cultured in cell lines known as human diploid cells. The most commonly utilised cell lines are, WI-38 (Wistar Institute) and MRC-5 (Medical Research Council). WI-38 was derived from lung tissue from a three month gestation foetus in 1964. Swedish parents who felt they had too many children, chose to abort the child. The MRC-5 cell line was derived from the normal lung tissue of a fourteen-week-old foetus that was aborted in 1966. This abortion from a twenty-seven-year-old mother was for 'psychiatric reasons.' Stocks of cells are not replenished from repeated abortions.

The rubella virus strain RA27/3 routinely used in the rubella vaccine was cultured from foetal tissue from an aborted foetus during the 1964 epidemic. The mother was exposed to rubella during the early stages of pregnancy. Pruss notes that by using RA27/3, use is not made of foetal tissue but only of a virus which had invaded the foetus. He argues that the continued use of RA 27/3 is therefore more easily justified than the continued use of the cell lines derived from foetal tissue. As he observes, "It is not the body that is used, but the body's enemy."

The history of the rubella vaccine provides an insight into the use of RA27/3 and human diploid cells. In 1969 and 1970 when rubella vaccines were first licensed around the world, the USA decided to licence vaccines developed using animal cell lines and other strains of the rubella virus. A number of problems gradually emerged. Vaccines developed using duck embryo and dog kidney strains caused significant joint reactions. Some people vaccinated with virus strains other than RA 27/3 when exposed to wild rubella virus became infected, while others vaccinated with strain RA 27/3 when exposed to wild rubella virus, did not exhibit symptoms of rubella infection. Europe had licensed the vaccine developed with RA 27/3 and the vaccine showed a respectable safety record. Thus, the USA decided that it would be preferable to use the rubella vaccine developed from RA 27/3.

The Vatican statement on ethically compromised vaccines

In June 2003, an American organisation called the Children of God for Life wrote to the Vatican seeking advice about ethically compromised vaccines. In June 2005, they received a response from the Pontifical Academy for Life. The then-President of the Pontifical Academy for Life, then-Bishop (now Cardinal) Elio Sgreccia noted in a cover letter that this statement had been approved by the Congregation for the Doctrine of the Faith.

To examine this issue, the statement draws upon an important Catholic principle, the Principle of Cooperation in Wrongdoing. When it considers the "doctors or parents who resort to these vaccines for their children," the statement provides four conclusions:

Firstly, when a choice exists between an ethically compromised vaccine and another vaccine which is not ethically compromised, the Pontifical Academy states that we have a "grave responsibility" to use the vaccine which is not ethically compromised. At the same time, however, the statement also recognises that there might be obstacles to doing this because "grave forms of allergy" have occurred with some of the uncompromised vaccines. If the risk of allergic reactions raises serious concerns, the duty to use uncompromised vaccines may cease.

Secondly, when no ethically acceptable alternative vaccines exist, doctors and families have a duty of "putting pressure on the political authorities and health systems so that other vaccines without moral problems become available." We should do this "by all means (in writing, through the various associations, mass media, etc.)."

Thirdly, as regards those ethically compromised vaccines without an acceptable alternative, "it is right to abstain from using these vaccines if it can be done without causing children, and indirectly the population as a whole, to undergo significant risks to their health." This might be possible, for example, if a vaccine offered protection only against a not very serious condition. It is not really possible if a vaccine protects against a serious condition.

Finally, if a failure to vaccinate exposes children and the general population to "considerable dangers to their health, vaccines with moral problems pertaining to them may also be used on a temporary basis." In these situations, the Pontifical Academy finds that there is a "proportional reason, in order to accept the use of these vaccines in the presence of the danger of favouring the spread of the pathological agent, due to the lack of vaccination of children."

In footnote 16, the statement notes that rubella causes "grave congenital malformations in the foetus, when a pregnant woman enters into contact, even if it is brief, with children who have not been immunized and are carriers of the virus." It makes the chilling observation that "in this case, the parents who did not accept the vaccination of their own children become responsible for the malformations in question." Indeed, if some women in this situation decide to abort, the Pontifical Academy even states that the parents whose unvaccinated children carried this infection bear some moral responsibility for these abortions. All things considered, then, even allowing for the current need to use ethically compromised vaccines, vaccination against rubella and other serious diseases truly is the more pro-life decision.

Herd immunity

Herd immunity is when a significant proportion of a population (or 'herd') are vaccinated. Their presence provides a measure of protection for individuals who are not vaccinated or who have not developed immunity, even after vaccination or exposure to natural infection. Based on such variables as the virulence of the disease, scientists have calculated herd immunity thresholds for various diseases. This is the proportion of the population who must be disease-resistant in order to effectively prevent the persistence of that disease within that population. For example, rubella cannot persist within a community in which 80-85% of the population are disease-resistant. By contrast, pertussis (whooping cough) is more infectious, and its herd immunity threshold is 92-94%. Herd immunity can provide some protection for infants who are too young to be vaccinated, pregnant women, immunocompromised individuals and people with various medical conditions who cannot always be vaccinated.

By contributing to herd immunity, the decision to vaccinate is also a contribution to the common good of society. Vaccination benefits society as a whole and particularly benefits those vulnerable individuals who must rely on herd immunity for some measure of protection against disease. In contrast to those who contribute to the common good through vaccination, those who do not vaccinate benefit from herd immunity without contributing to it. Grabenstein reports that for this reason sociologists refer to those who do not vaccinate as "free-riders" or "free-loaders." He adds that "such behaviour" is "inequitable and uncharitable." Further, "if enough people 'free-load,' then the community's collective immunity dissipates and disease outbreaks resume."

However, herd immunity has its limitations. Herd immunity can be weakened if the numbers of those who do not vaccinate grow. A further problem is the 'clustering of exemptions.' This means that those who do not vaccinate often congregate together in the same reasonably small geographic area, compromising herd immunity. Bliss provides a poignant historical example with his examination of the smallpox outbreak in Montreal in 1885, when some French Catholics refused vaccination.

Conclusion

The Catholic Church does not dismiss the problem of ethically compromised vaccines. To the contrary, it calls for research and development of alternative, ethically acceptable vaccines. It also exhorts all people including parents to join in this call. However, until alternative vaccines are developed, it also accepts the use even of these ethically compromised vaccines in order to protect children, pregnant women, and the population as a whole from the risk of contracting serious disease. The teaching of the Catholic Church provides no support for the refusal of vaccination against serious disease, even if the only available vaccines are ethically compromised.

Rev Kevin McGovern is a priest of the Rockhampton Diocese, Australia. Since 2007 he has been Director of the Chisholm Centre for Health Ethics in Melbourne.

Mrs Kerri Anne Brussen has a background in science with over 20 years in various laboratories. Her recent studies in theology provide a background to the intersection of science with Church teaching.

Richard A. McCormick, Health and Medicine in the Catholic Tradition (New York: Crossroad, 1987), 17.

Donald J. Keefe, "Tracking a Footnote," Fellowship of Catholic Scholars 9, no. 4 (1986): 6-7 at 7. Keefe's article details how an unsourced footnote and unsubstantiated comments can lead to inaccuracies in the historical record. Atkin and Tallett suggest that Pope Leo XII left vaccination as an optional practice, and that some priests at the time did see it as interfering with the natural processes of the body. For this, see Nicholas Atkin and Frank Tallett, Priests, Prelates & People: A History of European Catholicism since 1750 (New York: I.B. Tauris & Co., 2003), 103.

Sanofi Pasteur; GlaxoSmithKline; American Type Culture Collection

Ministry of Health, "Medsafe (New Zealand Medicines and Medical Devices Safety Authority)," New Zealand Government, http://medsafe.govt.nz/

Cameron C Grant et al., "Factors associated with immunisation coverage and timeliness in New Zealand," British Journal of General Practice 60, no. 572 (Mar 2010): 113-20 at 113.

Peter B. McIntyre, Alison H. Williams, and Julie E. Leask, "Refusal of parents to vaccinate: dereliction of duty or legitimate personal choice?" Medical Journal of Australia 178, no. 4 (2003): 150-151 at 150.

The frequently asked questions page of the New Zealand Immunisation Advisory Centre website has comprehensive and succint responses to most fears that parents have regarding immunisation. http://www.immune.org.nz/frequently-asked-questions

Barbara E. Eldred et al, "Vaccine components and constituents: responding to consumer concerns," Medical Journal of Australia 184, no. 4 (2006): 170-5 at 173.

Pontifical Academy for Life, "Moral Reflections on Vaccines Prepared from Cells Derived from Aborted Human Fetuses," The National Catholic Bioethics Quarterly 6, no. 3 (2006): 541-550 at 543.(NCBQ) The statement is also available at Children of God for Life (CGL), http://www.cogforlife.org/vaticanresponse.pdf. The two records of the statement differ in that the third footnote in the NCBQ version is missing from the CGL version. As a result, all subsequent footnotes are numbered differently. In this article, we cite the NCBQ version.

Rene Leiva, "A Brief History of Human Diploid Cell Strains," The National Catholic Bioethic Quarterly 6, no. 3 (2006): 443-451 at 445; Pontifical Academy for Life, 542-3

Stanley A. Plotkin, "The History of Rubella and Rubella Vaccination Leading to Elimination," Clinical Infectious Diseases 43, Suppl 3 (2006): S165-6;

Alexander R. Pruss, "Complicity, Fetal Tissue, and Vaccines," The National Catholic Bioethics Quarterly 6, no. 3 (2006): 461-470 at 465.

Plotkin, S165-6.

Pontifical Academy for Life.

Ibid., 547-548. This teaching is repeated in the Congregation for the Doctrine of the Faith's most recent statement on bioethics, which states that "danger to the health of children could permit parents to use a vaccine which was developed using cells of illicit origin, while keeping in mind that everyone has a duty to make known their disagreement and to ask that their healthcare system make other types of vaccine available." For this, see Congregation for the Doctrine of the Faith, Instruction on Certain Bioethical Questions (Dignitas Personae), #35, Holy See, http://www.vatican.va/roman_curia/congregations/cfaith/documents/rc_con_cfaith_doc_20081208_dignitas-personae_en.html

For a useful diagrammatic explanation of herd immunity, see (US) National Institute of Allergy and Infectious Diseases (NIAID), "Community Immunity ('Herd' Immunity), NIAID, http://www.niaid.nih.gov/topics/pages/communityimmunity.aspx

John D. Grabenstein, "The Value of Immunization for God's People," National Catholic Bioethics Quarterly 6, no. 3 (2006): 433-442 at 436-437.

Michael Bliss, The Making of Modern Medicine - The Turning Points in the Treatment of Disease (Chicago: University of Chicago Press, 2011), 22-30.

Ethics Committees – guardians of research participants’ rights or expediters of clinical research?

Sharron Cole

If the September response of the Government to the Health Select Committee's 'Inquiry into improving New Zealand's environment to support innovation through clinical trials' is implemented, there is the real likelihood that the role of regional health and disability ethics committees (HDEC) will become one of rubberstamping and expediting research rather than one of giving considered and principled analysis to ensure that the research is ethical and that there are adequate safeguards to protects the rights and interests of research participants.

The main aim of the Select Committee's inquiry was to ascertain how clinical trials and research proposals can be streamlined and how an effective clinical trials environment can be created. It identified the current system of ethical review as one of the main obstacles to delivering efficient clinical trial outcomes and made a large number of recommendations to radically alter the system of ethical review.

A number of submitters to the Select Committee inquiry, principally pharmaceutical companies and researchers, argued that the present ethical review system is 'overly bureaucratic' and that it is a hindrance to research, with one submitter arguing that it 'has become so unwieldy it is unethical'. Interestingly, submitters with an ethical expertise and a number of consumer groups argued that while the present process can always be improved (usually simply addressed by better resourcing), there was no evidence to suggest that the present system needed a major overhaul or to substantiate the allegations that the present system of ethical review was either flawed or a major hindrance to the carrying out of effective research.

Not all the Select Committee's fifty four suggestions have been taken up by the Government but it has accepted most of the recommendations which in summary are:

• developing standardised operating procedures for ethics committees (to have effect from 1 July 2012). These standardised operating procedures will:
• • introduce timelines for full review (35 days) and expedited review (15 days)
  • expand the expedited review pathway to include some clinical trials, and clarify and reduce the scope of HDEC review as a whole (focus more narrowly on ethical issues)
  • reduce duplication by clarifying the roles of HDECs, researchers, localities, and the Standing Committee on Therapeutic Trials
  • define when amendments to approved studies themselves require HDEC review
• developing shorter, simpler application forms (by mid-Jan 2012)
• implementing an online application system, with a 'central clearing house' (by 1 July 2012)
• reducing the number of committees from seven to four
• reducing committee size from twelve to eight members, including at least three lay members

The main concern that emerges from the Government's acceptance of many of the committee's recommendations is that the present primary objective of ethical review to 'safeguard the rights and interests of participants in research and innovative practice, and consumers of health and disability services' will be diminished.

The present carefully constructed system, which has been shaped by New Zealand's unique society, protects research participants by having:

1. Regionally-based ethics committees, in touch with and responsive to the needs of their local communities. The proposal to have fewer ethics committees will mean a move to a more centralised system with a loss of the unique advantages offered by the regional system.
2. Regionally-based committees which allow local iwi to have input, in line with Treaty obligations. The place of the Treaty in the system of ethical review is unique to New Zealand and means the principles of the Treaty are honoured.
3. Committees with twelve members, including six lay members, which give extensive scientific, medical, ethical, legal, disability, Maori and many other perspectives. It is the composition of ethics committees with people of different backgrounds each adding to the deliberation of ethical views that is one of the strengths of the present system. As C Wright Mills says, thinking in terms of a variety of viewpoints, "catching light from as many angles as possible."
4. Independent scientific, research and medical expertise which means an assurance that the research has scientific integrity and strengthens the committee's understanding of the scientific and clinical issues and of risk/benefit, thus contributing to more ethical, stronger decision making. The government's proposal is to take away this expertise and for the investigator or sponsor to obtain peer review. This is of real concern as the pharmaceutical companies are significant funding sources for researchers, making it extremely difficult for investigators to obtain un-conflicted or independent review.

Since 2007, many observational studies have received expedited review as they are reviewed by only the chair or deputy chair. The Government now proposes that expedited review should be available not only for observational studies but also for some 'low risk clinical trials'. It is not clear who will determine which trials constitute 'low risk' and thus qualify for chair-only review but the spectre of exposure to unanticipated risk is certainly raised. The proposal to include clinical trials in expedited review is both puzzling and concerning as the National Ethics Advisory Committee, whose primary function is to provide advice to the Minister of Health on ethical issues of national significance, had in 2009 identified interventional clinical trials as having a greater potential to cause harm and thus requiring close ethical scrutiny.

Since 2002, I have given a number of presentations on the system of ethical review in New Zealand, noting the strengths as outlined above but also outlining my concerns:

• Lessons of past quickly forgotten e.g.
• • Greenlane Hospital and collection of babies' hearts
  • Physiotherapy on babies at National Women's Hospital
• Attempts to revise history – e.g. the 'Unfortunate Experiment'
• Perception of lack of real commitment to, and understanding of, the importance of ethical review
• Low priority given to ethical matters e.g. length of time to review Operational Standard, lack of resourcing, lack of advertising
• 'Generalists' and vested interests appear to ignore the input of experienced working ethicists

As the New Zealand system of ethical review arose from the recommendations of the Cartwright Report, it behoves any reviewer to keep in mind Judge Cartwright's strong criticism of the poor quality of review surrounding clinical research at the time. She was fiercely critical, among many other things, of the lack of independence and impartiality of the Hospital Ethics Committee that approved Professor Green's research. She was pessimistic about the then existing medical establishment to develop a system of ethical review that would give adequate protection to research participants.

The ever shrinking and increasingly restricted nature of ethics committees since 2004, culminating in these proposed radical changes, makes it very difficult to be at all optimistic about the robustness of ethical review in the future.

Book Review - Health Cheque: The Truth we should all know about New Zealand's Public Health System

 Issue 30, April 2010

Authors: Gareth Morgan & Geoff Simmons

Publisher: Public Interest Publishing, 2009

Reviewer: John Kleinsman

The question of health care affordability is topical again.

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The Gardasil Vaccine – Is it Safe and Effective?

Issue 28, August 2009


Introduction

Gardasil, the latest vaccine to be added to the immunisation schedule of young New Zealanders, will soon be in its second year of administration within the community. It is funded and recommended for girls of twelve years of age with a catch-up programme offering the vaccine for girls and young women from 11 to 18 years of age. This 'cervical cancer' vaccine has caused controversy in ways different from previous vaccines, with objections to it ranging from fears that it is not safe to concern that it may increase promiscuity.

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