Palliative Medication: The Need for Common Sense

Anne Denton
Issue 13, August 2004

Lesley Martin is no longer on the front page of every newspaper but the issue of euthanasia will not go away. At the Hospice New Zealand AGM, June 2004, Peter Brown MP, said the "Death with Dignity" bill, promoting euthanasia, may have been defeated but the issues are still alive. At that meeting, hospice personnel present commented that patients in hospice palliative care services die with dignity.

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Clinical - Ethical Judgements without "short cuts"

Gerald Gleeson
Issue 14, November 2004

In March 2004 an International Congress on "Life-Sustaining Treatments and Vegetative State: Scientific Advances and Ethical Dilemmas" was held in Rome. The article below, which first appeared in Bioethics Outlook, Vol. 15, No. 3, September, 2004, looks at the implications of the Pope's address for the treatment of persons who are in a state of "post coma unresponsiveness" (traditionally known as the vegetative state).

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Aged Health Care and Ethical Business Practice

Mark Richards
Issue 14, November 2004

In the course of my work I have encountered various theories which describe leadership behaviours characteristic of effective and ethical organisations. In the first part of this article, I will summarise three such theories and offer a short reflection on what they teach us. Then, in a second part, I will offer some questions to assist those involved in aged care to reflect on the ethical nature of their own behaviour.

What do I mean by the term ethical? Ethics is the evaluation of human behaviour, and the allocation of the judgment by a society or individual that this action is either virtuous or to be avoided. Ethics is the result of a formation process whereby we come to hear a voice, whether in the inner core of a person or a society, which says: "Do this or shun that." Behaviour that is virtuous is chosen knowingly and freely and leads to responsibility and accountability.

1. De Beer

De Beer, a foundational theorist in operations research, has developed an approach to describing organisations that he calls the "Viable Systems" model. Simply put, De Beer believes that every effective organisation - hospital, health practice, rest home, or corporate health service - mimics a living organism. His approach, which focuses on the needs of the environment being served, looks at four key elements that ensure viability:

  1. Interacting with the environment. An organisation can only offer service if it is aware of the needs of the group it is serving, has the resources and is focused to act. By and large the actions of the "acting groups" can be recorded, measured and costed. We can record what actions are taken - who is spoken to, by whom and when. We can make judgements whether agreed to patterns of behaviour have been followed. We can measure the number of dollars per negotiation. The acting groups can include everyone - from those who are the caregivers to those involved in the negotiation of funds.
  2. Coordination of actions. Those who act must be coordinated. It is the role of coordination to ensure the best is chosen and acted upon at the right time and in the right order. There is nothing worse that applying for the same grant twice or giving a repeat dose of medication. As an organisation grows in its complexities there is a need for the coordination to be organised.
  3. Control and regulation of resources, time and focus. There is a need to work within various constraints that the stakeholders - State, client group, or the wider community - are able to afford. This involves control and audit, planning and budgeting, resource allocation, reporting and review. These constraints inevitably place some limitations on meeting the expressed needs of the group being served.
  4. Governance. An organisation's effectiveness depends on its vision and focus. This involves the development of governance, policy and procedure to balance the requirements of the various stakeholders and to ensure the ongoing viability of the organisation. Even the best-managed unit will go under if the wider needs of the political, social and economic environment are not taken into account.

De Beer concludes that it is rare to find a viable system in which all four of these actions are associated with a single-person role. The norm is for different roles to take different responsibilities.

2. Brousseau and Driver

Brousseau and Driver have developed a theory based on the amount of information leaders need to make a decision and the rapidity of their decision making. Their theory highlights that people display certain behaviours when they think others are watching and act differently when on their own. The model is based upon four different leadership profiles.

  1. Some people want only the minimum of information required and will then get on and make the decision. They want to act quickly and accurately within established patterns. They are frustrated by delay, innovation and procrastination.
  2. A second group want a breadth of information and perspectives. Then, then they have that information, they are willing to get on and make a decision quickly. They don't require a depth of information.
  3. The third group want a fullness of information and require such before acting but they want that information to be organized so as to come to decision relatively quickly. They are focused on acting and getting results. They like a good plan and structure so as to get a risk tolerant result.
  4. The fourth group seek multiple sources and elements of information. They will suspend judgment till they have information of a level that enables them to see and judge from multiple dimensions.

One group is fast, consistent, loyal, persistent and orderly. They get things done but may resist change and ignore new ideas. The second are fast, likeable, generate ideas, adapt swiftly, but may have a short term perspective, and lack coherent planning. The third are thorough, accurate, planned, objective and logical. They may be over-controlling, rigid and argumentative, and may actively resist others input. The last group tends to be creative, resourceful, collaborative problem solvers who are empathetic and tolerant.

When Brousseau plotted the most successful managers according to their level in the organisation, he found that the best supervisors were profiled most strongly at one, the managers at two, the GM's at three and the CEO/leaders at four.

From this Brousseau concludes that behavioural preferences in individuals lead to actions, decisions and approaches that are more successful and appropriate at different levels of the organisation. This theory suggests that in an organisation particular people are going to approach their decision making in different ways. Persons will seek to make decisions with diametrically opposed amounts of information.

Brousseau also concludes that as a person matures and grows with experience, the focus and approach of their decision making can develop. Accordingly, the level and amount of responsibility a person can handle changes in individuals and is different for different individuals. This is very much in keeping with the thinking of traditional moral development theorists such as Kohlberg and others.

3. Mahoney

A third model, Leadership Efficiency Analysis, derives from a 30-year longitudinal study by Mahoney and colleagues. They describe different sets of skills and competencies that are characteristic of "successful" leadership in organisations.

The first set of leader skills includes:

Having the ability to create a vision. This requires a series of skills and abilities, whether in an individual or group, that include being mistake averse and being steeped in the core elements of the profession - for aged care we might describe these as: do no harm; act to heal; support autonomy and independent decision making; promote informed consent; and acknowledge the place of next of kin.

  1. Showing innovation and being able to develop a culture of possibilities and novelty.
  2. Being aware of the technical demands of the business, environment and sector; for example, having sound knowledge of the process of aging as well as the legal and financial structures.
  3. Being able to make decisions and see their own limitations and strengths.
  4. Acting strategically by recognising the changing demands of the social, political and cultural environment; for example the changing demographics of an aging population and knowing that needs differ according to culture and gender.

A second set of skills and competencies identified by Mahoney centre around the ability of leaders to develop persons who will work with and for them. Successful leaders are persuasive and outgoing, excited, yet able to exercise restraint.

Finally, successful leaders possess a third set of skills and competencies that enable them to implement the vision. They can structure, decide on the best tactics, communicate and delegate. They are then able to follow through. They will take control of resources, give clear and accurate feedback and will work to achieve results. They want to be a leader and, interestingly, they are to a degree dominant, focused on output and production.

If this profile of the effective leader/manager seems rather "tough" it needs to be noted that Mahoney's study highlighted one other key element that characterises most successful leaders/managers. They are also team players; cooperative, consensual, empathetic and aware of the demands on, and the needs of, their stakeholders and immediate boss.

What can we learn from the three theories?

Reflecting on organisational structure in the light of the three theories has led me to identify a series of levels in the leadership of an organisation and to postulate a thesis. My thesis is that an individual's ethical decision making, and therefore their culpability and virtue, are a product not only of the traditional elements of knowledge and freedom, but of the very makeup of their personality and the behavioural and developmental levels that they have achieved. In other words, personal traits that shape our ability to gather and use information impact on our ability to lead, decide and act, and consequently to accept responsibility for our actions. The theories highlight that there are different profiles, needs, competencies and levels of information required if someone is to lead effectively and act morally in an organisation and that this may be different at different levels of the organisation.

How can we relate these insights to the way in which we approach ethics in aged care? I believe it can be done by raising a series of questions which will lead you to explore and evolve your own practice.

Ethics in Aged Care

In general, discussions about ethics and decision making tend to focus on individual responsibility and individual impact; the way one treats patients, end of life decisions, nutrition and hydration, enforced feeding, etc. I will, however, begin at the opposite end - at the level of governance - with the ethical responsibilities of the directors and owners and the wider group of stakeholders - the community and the State.

If one is frail and elderly, where does the primary responsibility for care lie? Does it lie with the individual, their family, the local community or the national community? What is our ethical accountability to the elderly who are in need and do not have the resources? There are core social responsibilities to feed, shelter, to heal and not to harm, to care and act justly. These questions lead us to a fundamental ethical judgment - the allocation of community resources.

The question of ethical behaviour then moves to the level of the organisation involved in aged care services. An organisation is morally and ethically bankrupt if it is unaware of the social, economic and political demands, and if it does not structure itself prudently in respect of best financial, managerial and clinical practice. Board members and senior management must be capable of understanding and making complex decisions. This, in turn, involves examining the vision, intention, aims and structures of our organisation.

We have an ethical responsibility to evaluate the environment in which elderly people live. What is acceptable, socially and ethically is not limited to what is legal. It was at one time legal to have unpaid servants. That did not make it ethically acceptable. It is legal to establish under New Zealand law a company that makes a healthy profit out of the needs of the elderly. Does that make it ethically acceptable? While not a vice, there is no over riding virtue in making a profit. It is only one element that informs the vision of aged care facilities.

When establishing an aged care facility we put out a prospectus for shareholders and investors and we put out a brochure for prospective patient/clients. What are the obligations and whose obligations come first? Is there adequate funding and ability to protect the interests of those who invest? If not, this constitutes a breach of trust that can all too easily amount to negligence, false pretences and theft. If we have put ourselves forward as a "community of care", where is our obligation to the impecunious and the frail, the disabled and the high need? If an individual can't pay should we put them on the street for a breach of contract?

Are we only responsible for the things we have done or are we also responsible, by omission, for failing to recognise a possibility or enable access to a service that we should have? Have we chosen people with the proper ability and preferred behaviours to lead the organisation? Are those with leadership responsibility able to communicate to others and persuade them as to what needs to be done? The Royal Commission of Inquiry into the treatment of cervical cancer presents us with a perfect New Zealand example of a system wherein, by commission and omission, people acted both immorally and illegally.

Owners and board members need to be able to see and mitigate the risks, need to be aware of the legal and contractual obligations as well as the ethical and moral responsibilities they are taking on? Herein lies both individual and corporate moral responsibility.

The next level of accountability lies with those in an organisation who have responsibility for the planning, structuring and organising. The structures of management exist not only for financial and organisational accountability - they are structures through which ethical accountability and responsibility also flow.

There is an ethical and moral responsibility that service personnel have the proper skills and resources and that they are competent to deliver such. Are there established plans, budgets and programmes? Do key staff possess the core technical skills required? Is there openness in listening to best practice at the governance, managerial, supervisory and action levels? Medical training doesn't necessarily make someone an expert in the protection of shareholders monies or employees' contractual requirements. Is correct advice being sought? Are legal requirements articulated? Are there established audit, control and coordination processes?

What about systems for communication? Others cannot be held responsible unless they are aware, are resourced and are told that something is working or not working. Are there clearly established expectations of performance and results? Are there just wage and working conditions? Is there a commitment to professional development? Is the care holistic in its vision and practice?

What is the care environment like? Are there high standards of hygiene? How can patients' autonomy be preserved and their choices maximised? What choices do they have? What efforts are made to ensure they understand? What about cultural safety? Are there the systems to ensure that things are delegated and recorded, whether paying for a job or recording faults in the service?

It is not enough to focus on the actions of the board or health professionals. Legal and moral responsibility and accountability also apply in respect of the accountant, the physiotherapist, the caterer, the priest or chaplain. There is a responsibility to ensure that they don't break the law, and that there is a professional relationship based on care and trust.

The next key issue is the way in which an organisation interacts with its environment. Are key staff capable of seeing the "big picture" or are they very good practitioners who have a very narrow approach? Financially sound systems managers who can cut costs and develop strong reporting structures need to understand and be committed to the broader vision while also being aware of the technical requirements of their industry. In the aged care sector there are numerous examples of innovation and resource allocation at work. But has this been done to the detriment of employees? Who are the people who are caring for the clients? Are they trained, competent, rested and aware of best practice?

People cannot act virtuously without knowing what constitutes best practice and without the knowledge and wisdom to avoid risk. We accept that persons cannot blame their actions on a superior: "I was under orders". However, if a person does not know, has no real choice or ability to change the situation and is trying to balance obligations that are to some extent at least in conflict, then their personal culpability is lessened. At the same time the culpability of those who had the obligation to organise, to supply, resource, and plan is raised. There is an ethical duty to foster an organisational culture that is responsive to environmental needs within the constraints of resource and policy.

Finally, at the level of interaction with the client, the supplier or the community, staff have an obligation to act professionally according to established best practice; to know their craft, to remain updated, to give an honest day's work for an honest day's pay, to communicate and reflect the needs discovered and to work for the betterment of the organisational whole.

In all of these elements we are led to the font of moral culpability. Within a healthy organisation structures and processes will empower persons so that they act with full knowledge and according to a path that is freely chosen.

The organisational theories outlined above suggest that in an ethical organisation the staff and practitioners need ready access to information, will know the possibilities and be able to make quick and focused decisions. In making these decisions, however, there exists a fundamental tension between the needs of the client and the ethical responsibility of staff.

Those in positions of leadership who are charged with making decisions will be under pressure to act. They will decide and act on the basis of the information that is available to them. They will also act according to the best practice they have been educated in. In general we can say that they will act as taught. If the organisation says that informed consent is required, then they will almost certainly act accordingly. However, it is equally the case that if practice dictates, for example, leaving a client in bed till 10:00 am and then letting them sit for seven hours, that staff will see that as the norm. Some might say that these people are not responsible. I suggest that those who step into the aged care arena at whatever the level, including the uninformed, the untrained, the unskilled, are morally and ethically responsible.

Conclusion

There are skills, abilities and ways of thinking that are required of individuals in positions of responsibility within the different parts of an organisation. To let someone sit on a Board who they are unable to understand the wider implications is unethical. To have them there purely because they are the financiers is unethical; they should appoint a director to represent their interests.

To appoint a CEO who cannot communicate, plan and organise, is unethical. To have a night supervisor in an operation of 500 clients who cannot coordinate, see options and work as part of a team is unethical.

To appoint staff and not train them in the understandings they require to make decisions with and on behalf of their clients is unethical. To appoint a person beyond the level of their fundamental ability and behavioural competency is unethical.

On the other hand to establish an organisation with staff who have these fundamental sets of abilities and skills is virtuous and the basis of a just and ethical society. It is at this level that we create the "City of God". Ultimately this requires an organisation to move beyond a simple task oriented focus. The challenge of behaving in an ethical way at the organisational level requires the establishment of a common ethos and a culture of communal responsibility and accountability. This calls for a modus operandi of empathy, consensus and cooperation, all within an awareness of the stakeholders' needs and the requirement for each individual to do their job ethically.

How can we see this in a take home package? De Beer, Brousseau and Mahoney couldn't have put it any better than a tent maker from Antioch who once wrote:

"Instead of that God put all the separate parts into the body on purpose. If all the parts were the same how can it be a body? As it is the parts are many, but the body is one". (1Cor 12:18ff)

____________________

Mark Richards works in career consulting, leadership development and management assessment. His experience also includes parish leadership, chaplaincy work and chairing a Health Ethics Committee. This article is an edited version of a presentation given by the author at The Nathaniel Centre's Inaugural Conference 'Spiritual and Ethical Issues in Aged Care' in November 2003.

©
2003

 

The Starfish Programme

Anne Dickinson
Issue 14, November 2004

San Lazaro Hospital is a 600-bed infectious diseases hospital in a poor area of Manila. It deals with people who have diseases such as rabies, measles, tetanus, tuberculosis and AIDS. The hospital is under-funded and struggles to provide care for people who are themselves poor. The life-threatening nature of many of the diseases affecting San Lazaro patients means that there are many deaths in the hospital.

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Spirituality, Suffering and Dementia

Michael McCabe
Issue 17, November 2005

Introduction

Some forty years ago the Second Vatican Council concluded its deliberations with the very beautiful document, "Gaudium et Spes" - "The Church in the Modern World". It contains many rich themes, not least, the nature and dignity of the human person and the communal or social nature of that human person. By his or her very nature the human person is not only to be considered "whole and entire, with body and soul, heart and conscience, mind and will" (Gaudium et Spes, n.3), he or she must also be considered as a being-in-community.

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End-of-Life Care

Dr Elizabeth Hepburn (IBVM)
Issue 17, November 2005

In Australia there has been a move in public hospitals to encourage the formulation of advanced care directives through a programme known as 'Respecting Patient Choices'. This programme has prepared a patient information sheet and also instituted a process by which the matters canvassed could be discussed with trained personnel. In its inception it has much to recommend it.

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The New Zealand Suicide Prevention Strategy 2006-2016 - A Critique

Michael McCabe
Issue 19, August 2006

The anguish and despair following the suicide of someone we love can be overwhelming. Two questions that we ask over and over are WHY and WHAT could we have done to stop them. At a national level, knowing that we continue to have high rates of suicide for some age groups compared with other countries raises the same questions; WHY and, as a nation, WHAT can we do about it.

--The Honourable Jim Anderton, Associate Minister of Health

Approximately 500 New Zealanders die each year by suicide and five times as many as this figure are hospitalised after a suicide attempt. Suicide in New Zealand is a serious problem annually more New Zealanders die this way than on our roads.

Eighty percent of all suicides in New Zealand occur with people aged 25 and over, with the majority of these deaths in the 25-44 year age group. While the young are particularly vulnerable to suicide the impact of suicide is felt across all age groups in New Zealand including the elderly and socially isolated, those who live in the most deprived areas of the country, the unemployed and those suffering from depression. Young Māori men and women have a significantly higher rate of suicide and hospitalisation for suicide attempts than non-Māori. Although more females are hospitalised after attempting suicide more males actually die by suicide.

The emotional devastation caused by suicide is profound for families as well as for the wider community. Suicide also has a major economic effect on the community. It is estimated that the annual cost of suicidal behaviour in New Zealand is nearly 1.4 billion dollars.

In his foreword to The Ministry of Health's recently published The New Zealand Suicide Prevention Strategy 2006-2016, Associate Minister of Health, the Honourable Jim Anderton hoped that the release of this new strategy will mobilise renewed efforts to work together to prevent suicide and suicidal behaviour. He noted that suicide prevention is complex and many would admit there is no quick fix to this social problem in New Zealand which affects so many every year. Nevertheless, with sustained and coordinated action at many levels in society, and with a variety of approaches, it is possible to achieve significant results in suicide prevention.

The Suicide Prevention Strategy builds on an earlier national strategy aimed at lowering youth suicide [The New Zealand Youth Suicide Prevention Strategy 1998.] The rate of suicide has decreased for young males as a result of this earlier strategy and there are more services and community resources in place to help the young and the wider community understand suicidal behaviour and suicide prevention.

In this latest strategy the focus has now expanded to all age groups, acknowledging the fact that suicide has a significant impact in other age groups, most notably in elderly males who have a higher rate of suicide than younger males. The prevention strategy outlines a framework that shows how the various activities across a range of sectors in the community can come together to prevent suicide across all age groups. Underpinning this framework is a fundamental vision of a society where all people feel that they:

  • Are valued and nurtured
  • Value their own life
  • Are supported and strengthened if they experience difficulties
  • Do not want to take their lives or harm themselves.

The strategy aims to reduce the rate of suicide and suicidal behaviour and equally to reduce the harms and impacts that are associated with suicide on families/whanau, friends and the wider community.

The seven goals of the New Zealand Suicide Prevention Strategy are to:

  1. Promote mental health and wellbeing, and prevent mental health problems
  2. Improve the care of people who are experiencing mental disorders associated with suicidal behaviour
  3. Improve the care of people who make non-fatal suicide attempts
  4. Reduce access to the means of suicide
  5. Promote the safe reporting and portrayal of suicidal behaviour by the media
  6. Support families/whanau, friends and others affected by a suicide or suicide attempt
  7. Expand the evidence about rapes, causes and effective interventions

With some insight the strategy notes that while suicide is a serious health and social issue, and represents a significant loss to our society it is also an indicator of the social wellbeing of the population.

The importance of societal factors in suicide was recognised more than one hundred years ago by Sociologist Emile Durkheim in his 1897 book Suicide: A Study in Sociology. He was the first to discount non-sociological explanations of suicide. He sought to show that, what masked as a highly individual and personal statement, could be explained, in part, in terms of the degree of social integration within a particular society. He argued that suicide was an echo of the moral state of society and was in fact dependent on social causes and not on individual conditions even though the latter were a factor in suicide. For Durkheim, a high rate of suicide in a particular society or particular social group was in direct proportion to the lack of social cohesion in that society or that social group.

Examination of the World Health Organization's Map of Suicide Rates helps to illustrate this point. Countries with the highest rate of suicide include Australia, New Zealand, Russia, China, Eastern and Central Europe. Predominantly Catholic and Islamic countries have some of the lowest rates of suicide. Do these statistics reflect the more secular nature of our New Zealand society or are there other sociological factors beneath such disparity? Might a society that valued the transcendent have a better appreciation of the role of religion and faith in suicide prevention? The Suicide Prevention Strategy would be strengthened if there was wider recognition of the place of faith and spirituality and their role in helping to protect the vulnerable against suicide.

The strategy document does not address the issue of physician-assisted suicide or euthanasia and claims that this subject raises separate ethical, legal and practical issues. While the issues appear to be separate they are very much linked to the wider issue of suicide in society, as Durkheim implied so many years ago. This is particularly so when one considers a topic such as 'the meaning of life' from the perspective of the elderly.

In recent years the increase in numbers of the elderly is reflected in the growth of retirement communities which provide a continuum of care that ranges from independent living to rest-home and finally to hospital care. While retirement homes can offer wonderful care, a greater sense of security and opportunities for community living, they can unwittingly leave the elderly feeling isolated with minimal influence in society. To the extent that this is perceived as being true, or is true in reality, then some elderly may well feel that their lives have lost meaning long before they lose their lives. This perception may well predispose the elderly to greater risk of suicide. Because their physical frailty may limit their ability to commit suicide, voluntary euthanasia and physician-assisted suicide offer a false form of security.

Given the very high rate of suicide in elderly males in New Zealand it is timely to recall the fact that the calls for voluntary euthanasia and physician assisted suicide reflect a high level of suicidal ideation in this group as well as in the chronically and terminally ill.

Conclusion

The Suicide Prevention Strategy depends on adequate mental health services for all ages and therefore highlights the need for a deeper understanding of the mental health requirements of the elderly. Further, because voluntary euthanasia and physician assisted suicide is part of the pattern of suicide in our society, it has to be recognised and addressed for what it is a method of committing suicide.

The strength of the Suicide Prevention Strategy document is in the way it openly addresses a major personal and profound social problem in New Zealand. The prevention strategy rightly states that there are no quick fixes to a problem of such depth. Nevertheless, in recognising the social causes of suicide, even implicitly, and in providing a strategy to help prevent the untimely and devastatingly tragic death of New Zealanders, it helps provide a way forward for all in the society. Durkheim described this path as social cohesion. It can also be described as the path to stronger communities.

_____________________

Rev Michael McCabe, PhD
Director
The Nathaniel Centre

©
2006

Defining New Zealand Palliative Care: A Discussion Document

Nathaniel Centre Staff
Issue 19, August 2006

The challenges and needs of people at the end of life are multifarious. In the first instance the priority is to enhance quality of life by providing relief from pain and other distressing symptoms. This calls for a holistic approach to care that integrates the physical, psychosocial and spiritual dimensions, and that also takes account of the needs of families/whanau and other caregivers who are accompanying and caring for the dying person.

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