Advance Directives: A view from the office of the Health and Disability Commissioner
From time to time tensions may arise when patients or their families either request a treatment that is deemed to be clinically inappropriate or when they wish to refuse a treatment that is clinically appropriate and which is commensurate with a health professional's duty to provide the necessaries of life.
In light of recent increased interest in the question of Advance Directives, the Office of the Health and Disability Commissioner has provided the following article which describes the current legal situation in New Zealand.
Introduction
The Code of Health and Disability Services Consumers' Rights (the Code) is of particular relevance to advancing illness and end of life care as it recognises key patient rights, such as the right to dignity and independence; the right to services provided in a manner that optimises the patient's quality of care; the right to continuity of care and the right to open and honest discussion about the patient's conditions and options for care. The situations in which life prolonging treatment may be withheld or withdrawn differ according to whether the treatment is, or is not, clinically appropriate.
Treatment clinically appropriate
A provider may decide that non-treatment or withdrawal of treatment is clinically appropriate, for example if the treatment is futile and is causing suffering. If the withdrawal of life prolonging treatment is in keeping with good medical practice, the providers responsible have a lawful excuse for not providing treatment. With regard to a decision to withdraw life support, the High Court has defined 'good medical practice' as requiring:
• A decision in good faith that withdrawal of the life support system was in the best interests of the patient.
• Conformity with prevailing medical standards and with practices, procedures and traditions commanding general approval within the medical profession.
• Consultation with appropriate medical specialists and the medical profession's registered ethical body.
• The fully informed consent of the family.
However, in a later case, the Court of Appeal decided that the consent of the family was not required for the provision of treatment to or the withdrawal of treatment from an incompetent patient. The provider is only required to undertake reasonable consultation and then take into account the views of the family. If the decision raises significant ethical issues, rather than issues of clinical judgment, then Ethics Committee consultation and approval may still be required.
Right 7(4) of the Code provides that if a person is not competent and there is no one entitled to consent on their behalf, the provider may provide services where it is in the best interests of the patient. Reasonable steps must be taken to ascertain the patient's views and the steps taken must be consistent with what the patient would have wanted if they were competent. If the patient's views are not known, the provider may take into account the views of available persons who are interested in the person's welfare. In such a case, following consultation, the decision about provision or withdrawal of treatment is made by the provider in the best interests of the patient.
Advance directives
An advance directive can only be made by a competent person regarding his or her own future treatment. It must be intended to be effective when the person becomes incompetent. An advance directive does not have any effect while the person is competent. Right 7(5) of the Code provides 'every consumer may make an advance directive in accordance with the common law'.
Advance directives enable patients to indicate in advance their objection to or prohibition of the provision of treatment which would otherwise be provided. They may also specify the type of treatment they would wish to undergo should they become incompetent.
Advance directives do not have to be in any particular form and do not have to be in writing. However, advance directives may fail because the intention was unclear. If a valid advance directive exists the directions must be respected as it is legally binding. The right to refuse medical treatment is so fundamental that it is recognised in the New Zealand Bill of Rights Act 1990 (section 11). An advance directive may also be used to express a preference about which of two viable treatment options are to be supplied.
An advance directive refusing future treatment can excuse health professionals from providing treatment which they would otherwise be under a duty to provide. Advance directives can make the provision of such treatment unlawful.
Do Not Resuscitate Orders
A 'Do Not Resuscitate' order (DNR order) is a form of advance directive. A competent person can direct that should they suffer a medical event in which cardiopulmonary resuscitation (CPR) is clinically appropriate, they do not wish such resuscitation to be provided. This is a limited form of advance directive and does not refer to any other life prolonging treatment that might be required.
CPR is not generally clinically appropriate where it is considered futile or medically contraindicated. Resuscitation is a medical issue for the doctor responsible for the patient's care and if resuscitation is not clinically appropriate it should not be provided. If a doctor decides that future resuscitation of the patient is not clinically indicated, the doctor may put a non-resuscitation order in place as part of the patient's overall future care plan. In such situations the doctor should discuss the decision with the patient and/or suitable persons who are interested in the welfare of the patient.
It is important to note that a patient's enduring power of attorney, welfare guardian or family members are not able to refuse clinically indicated CPR or any other clinically indicated treatment.
Conclusion
An advance directive is a written or oral directive made by a competent person about their future care. A DNR order is a type of advance directive. A patient is entitled to refuse treatment and may do so by way of an advance directive made prior to becoming incompetent or a competent patient may refuse consent at the time of treatment. An attorney appointed under enduring power of attorney or a welfare guardian may not refuse consent to standard medical treatment or any procedure intended to save the patient's life or prevent serious damage to their health. Family members who have not been appointed as the patient's enduring power of attorney or welfare guardian do not have the power to consent to, or refuse treatment, although clinicians should consult the family when making decisions under Right 7(4) of the Code.
Dr Cordelia Thomas is the Specialist Senior Legal Advisor for the Office of the Health and Disability Commissioner
Footnotes
1Auckland Area Health Board v Attorney General [1993] 1 NZLR 235 (HC).
2 Shortland v Northland Health Limited [1998] 1 NZLR 433 (CA). 3 Sometimes referred to as a 'living will' this is a written or oral directive by which a person makes a choice about a possible future health care procedure. 4 Code of Rights Clause 4.
Guides for people considering their future health care
Catholic Health Australia has prepared a guide for people considering their future health care needs as well as a guide for health care professionals. The guide is described as being consistent with Catholic principles as well as with good secular ethics.
The documents have been approved by the Committee for Doctrine and Morals of the Australian Catholic Bishops' Conference.
The guide for people considering their future health care provides a model statement along with a commentary designed to inform them of the issues that need to be taken into account and assist them with their planning.
The document notes, in particular: "Given the continuing debates over euthanasia and the withdrawal of medical treatment, it is important to state explicitly that you do want life-sustaining treatment that is reasonable to be provided unless it becomes futile or overly burdensome."
These guides can be accessed from the Catholic Health Australia website
The National Advance Care Planning Cooperative (New Zealand) has also produced a comprehensive guide for the New Zealand health care workforce on Advance Care Planning.
The guide notes that while effective Advance Care Planning does not necessarily require a written advance directive, "there is no doubt ... that a documented advance directive or advance Catholic Health Australia has prepared a guide for people considering their future health care needs as well as a guide for health care professionals. The guide is described as being consistent with Catholic principles as well as with good secular ethics.
The documents have been approved by the Committee for Doctrine and Morals of the Australian Catholic Bishops' Conference.
The guide for people considering their future health care provides a model statement along with a commentary designed to inform them of the issues that need to be taken into account and assist them with their planning.
The document notes, in particular: "Given the continuing debates over euthanasia and the withdrawal of medical treatment, it is important to state explicitly that you do want life-sustaining treatment that is reasonable to be provided unless it becomes futile or overly burdensome."
These guides can be accessed from the Catholic Health Australia website:
http://www.cha.org.au/site.php?id=223
The National Advance Care Planning Cooperative (New Zealand) has also produced a comprehensive guide for the New Zealand health care workforce on Advance Care Planning.
The guide notes that while effective Advance Care Planning does not necessarily require a written advance directive, "there is no doubt ... that a documented advance directive or advance care plan arising from a well-informed discussion involving both the individual and the health care professional(s) is more likely to meet the criteria for validity than an unrecorded oral directive or plan, or an advance directive drafted either by the individual on their own or as a legal document in isolation from health care professionals."
The workforce guide also notes: "In the New Zealand context it is likely but as yet legally untested that a written advance care plan would constitute an advance directive for legal purposes." For this document go to: http://www.moh.govt.nz/moh.nsf/indexmh/advance-care-planning-aug11
A resource aimed specifically at consumers (both patients and their families/whanau) has been produced to complement this document. See: www.advancecareplanning.org.nz.
care plan arising from a well-informed discussion involving both the individual and the health care professional(s) is more likely to meet the criteria for validity than an unrecorded oral directive or plan, or an advance directive drafted either by the individual on their own or as a legal document in isolation from health care professionals."
The workforce guide also notes: "In the New Zealand context it is likely but as yet legally untested that a written advance care plan would constitute an advance directive for legal purposes." For this document go to: http://www.moh.govt.nz/moh.nsf/indexmh/advance-care-planning-aug11
A resource aimed specifically at consumers (both patients and their families/whanau) has been produced to complement this document. See: www.advancecareplanning.org.nz.
Editorial - The Euthanasia Debate: ‘Play the ball and not the man’
In response to a report on recent comments made by me about the dangers of legalising euthanasia, two people wrote: "I am sick of the religious trying to force their narrow views on society." "Dictate what you like to your own flock, stay the hell out of the affairs of people who want nothing to do with your beliefs." It's a classic case of 'playing the man instead of the ball', discounting my message because of my religious beliefs.
The point being made by these commenters is that religion should have nothing to do with the debate about euthanasia. In response I would say that this is a debate for the whole community. Nevertheless, while Christians have as much right to express their views as any other New Zealander, I do agree that religions should not dictate the content of the law.
I am not interested in imposing my religious views on anyone, and with respect to euthanasia, my personal view is irrelevant. Whether or not people are personally in favour of, or opposed to, euthanasia is ultimately beside the point. To ask this question, as a recent Sunday Star Times poll did, is to ask the wrong question.
The reasons people choose euthanasia are generally based on a fear of suffering, lack of adequate care and social isolation. Promoters of euthanasia suggest that many people die in great physical pain. This is not so if they accept and can access good palliative care. Control of physical and psychological pain has become much more effective in the last thirty years. People rightly want to have choices when they are dying. They wish to feel in control and most often want to die at home. These needs can be met in a holistic and safe way through good advance care planning and comprehensive palliative care.
Having the freedom to choose euthanasia is also about control, specifically control over the timing of one's death. However, the crucial question with respect to euthanasia is whether it can be safely implemented. Maryan Street, MP, glibly asserts that it can while ignoring overseas evidence that says otherwise. I, along with many other New Zealanders, believe differently. Our argument is not religious. It's about the safety and protection of the vulnerable. We need to consider the argument in a rational manner.
The reality of the dangers of euthanasia is readily acknowledged by those wanting to legalise it. It explains why emphasis is placed on building in so-called safeguards. It has also been admitted by Maryan Street in a public debate that no amount of safeguards can stop the law being abused. They simply fail to meet the real world test.
I recently met Sean Davison who was convicted of assisting in the suicide of his mother. He strikes me as a genuine warm person who had the courage to follow his beliefs. It is apparent he thought long and hard about his action. But there will no longer be any need for the same degree of soul-searching if euthanasia were to become legal. It will become relatively easy for people to succumb to more base motives. Legalising euthanasia is fraught with possibilities of abuse for those who are elderly, disabled or dying. These abuses will be easily disguised and hard to identify or prove.
In addition, ours is a society that is increasingly elderly, with growing pressure on health care resources for expensive care. Legalising euthanasia will contribute to those who are nearing the end of life or disabled feeling they are a burden. It is what one commentator has called "the distant and off-handed dismissal of the quality of life of certain people." No law can offer safeguards against this. The right to die will quickly become the duty to die.
Modern living is increasingly busy and elder abuse is an increasing problem. We should not underestimate the subtle ways, conscious and unconscious, families have of putting pressure on their relatives to relieve their burden of care – both emotional and financial. Those working with the dying know this only too well. The very act of making euthanasia legal will remove the most effective barrier we currently have against such abuses.
Such pressures might not matter for a handful of strong-minded people firmly resolved to end their lives. But most people at the end of life aren't like that. They are vulnerable and ambivalent, wavering between hopelessness and hope and worrying about becoming a burden. In which case, large numbers of people may well find themselves on a course about which they are less than whole-hearted but one to which they can see no other alternative.
This is not free choice but a lack of choice. Legalising euthanasia will end up being an illusory choice for far greater numbers of persons than the few who will ever choose to exercise a legal right to be killed.
It is the role of the law in a democratic society to ensure the interests of the majority are not prejudiced by choices granted to a few.
John Kleinsman is Director of The Nathaniel Centre
Spiritual care at the end of life What is spirituality?
Anna Holmes
Spirituality is an inherent aspect of human beings and means many different things to different people. We are not here talking about religion, which is a way of understanding and ordering spirituality for some. People often produce a number of meanings of spirituality, struggling to define something that is dynamic and in continual growth and development.
Healthy spirituality Is unique, embodied, a search, a journey. It has stops and starts and may be lonely and painful as well as enriching and fulfilling. It continues from first cry to last breath – both of which take us by surprise. It has a number of meanings.
- Connection
- Mystery
- Uniqueness
- Unknowable – beyond rational and religious
- Centre of self or soul
- Meaning and purpose
- Growth and transitions
- Seeking right path
- Religious beliefs
- Spirituality and connection
This diagram attempts to show the connectedness of spirituality. The three leaves of the diagram represent the self, the natural world and the human other. The space at the centre represents the transcendent within and the space around represents the transcendent without. This ancient diagram is most commonly associated with Celtic Christian art.
The beauty of this diagram is that it shows the intimate interconnection of the whole so that although it is possible to speak about aspects of spirituality in relation to the self, the other, the natural world and the transcendent, in reality all aspects are interconnected. Changes in one aspect inevitably affect all the others. The individual person does not exist in splendid isolation. At any point in time spirituality experienced in the depths of self, with others, in the natural world and the transcendent moves between all these aspects in a fluid flow of connection that resembles a laser light show.
Spiritual pain
Those who are dying experience deep spiritual pain as do their family and friends. Spiritual pain may involve a deep sense of loss of self, meaning and purpose, control, and of life. Many people find it difficult to understand and deal with. As one patient said "You'd think cancer was catching. People cross the road to avoid having to talk to me."
Physical suffering can be helped by appropriate medicine but spiritual suffering needs deep human connection. People at the end of life are often fearful, feel guilty and unforgiven or unforgiving about past events and worry about being a burden to those they love. They also fear being abandoned. The commonest reason for seeking assisted suicide or euthanasia is the fear of being a burden or being abandoned.
Some years ago I saw a patient who was restless and unsettled. When asked what was wrong he said crossly ''I'm not myself any more''. This is the state of all people who are dying. The healthy competent self is lost and suddenly they become weak, fearful and helpless. It takes time and help to accept this self as another aspect of the journey. It is about seeking healing which can only occur when there is deep human and spiritual connection between patient and carer.
Treating spiritual pain
Treating spiritual pain has three aspects – bearing witness to suffering, enabling hope and letting go. Bearing witness is not being an idle bystander. It is allowing yourself to be drawn in to the world of the 'other'. This can be described as the courage needed to provide a bridge to the suffering person. When this happens both are transformed and enriched.
Bearing witness makes meaning by acknowledging the reality of suffering and not abandoning the sufferer. Bearing witness in this way we become just one human being to another. It takes courage to stay with anyone who is suffering for humans possess mirror neurons that resonate with the suffering of others. It also requires persistence to stay faithfully with the suffering person.
The second major task is to offer hope. There are two kinds of hope.
Extrinsic hope, dependent on other people, happenings and circumstances
and intrinsic hope which comes from within the depths of the person.
Extrinsic hope is not very helpful when based only on options for physical cure. On the other hand it is good to hope for a pain free day, to see a new grandchild, or a friend coming from a distance.
Maintaining hope and trust in the face of death is about accompanying and bearing witness to the patient's journey and providing care for physical, psychological, spiritual and social symptoms for the patient and their caregivers. Most of all it is about listening well. "Listen to me, do but listen and let that be the comfort you offer me." is what Job said to his false comforters. (Job 21:1-2) It is the plea of those who are feeling abandoned and losing hope.
Intrinsic hope may be in remembering past positive or supportive experiences or events. Recalling how spiritual pain and grief in the past has been coped with may be helpful as can remembering the sense of the presence of God or the transcendent.
Being there is central to hope. It is also clear that seeing people who are known is very much better for patients than seeing strangers. Finding and recognising the symbols of hope that speak to the individual is very important. Symbols of hope are unique to each person and they connect that person to events in their lives that have been enabling of growth and love.
I once visited a patient. In the corner of the room was a huge tussock. I admired it, saying how beautiful tussock was. The patient who had been very quiet, lying flat and looking sad, sat up and talked passionately about the importance of tussock to high country musterers. Its smell, its texture; how each man and dog found a clump to rest in after lunch. You could see the spiritual connections unfolding, to mountains, to loved companions, to dogs and sheep, to the earth and to a son who had thought of bringing it in. The dance of connections lit up the room for both of us.
The final task for those dying is letting go. As might be expected this is not a one way process for carers and family also have to let go. Sudden death makes letting go very difficult because there is no opportunity to say goodbye. Having time to say goodbye certainly seems to make grieving a smoother process.
For the carer, it is letting go of the person cared for. For some it may also involve letting go of wishing to fix the other person's suffering. The wish to avoid suffering seems to be a strong motivator for suggesting assisted suicide for some people.
Care of the carer
It is very important that spiritual care is practiced by caregivers. There are many ways of nurturing spirituality. Taking time to be is the most important. This is needed for reflection and connecting with others, the natural world and the transcendent. Having a creative activity also seems to nurture the spirit. Prayer and rituals may also be spiritually nurturing. These may be simple lighting of candles or playing gentle music.
Dying well
The human paradox is being born yet knowing we will die. Facing this sends all people on a lifelong spiritual journey. Dying in our culture is usually seen as a bad thing. Yet we are all going to die. Our western culture tries hard to ignore this paradox. Scientific medicine colludes in this illusion by promoting the idea that medicine is primarily about cure. Cure is the removal of disease by medical or surgical means. It focuses on the pathology of individual organs, systems and people. This means that death is seen as failure and so is difficult to talk about.
The angriest patients I saw whilst working in a hospice were those who had been told at the hospital "There is nothing more we can do here for this disease." When doctors focus only on cure, patients feel abandoned when cure is not possible. There is a conspiracy of silence that interferes with good conversation about the hopes and desires of people when they are moving towards death.
To die well is a healing event for the person, family and friends. In order to do this the dying person and their family need healing. Healing finds new meaning, reconnection, and reintegration with family and community. Families need to be well supported, told the truth about what is happening and the possible time frame. They need to forgive and be forgiven, to remember their life together with joy and thankfulness. Death may then become the final stage of growth.
Anna Holmes PhD MB ChB, a General Practitioner for forty years has worked in palliative care for the last ten years. A lifelong interest in the interface between spirituality, health and healing was completed by a PhD Embracing the Paradox: Spiritual Issues in General Practice.
Dementia, identity and spirituality
Chris Perkins
Because people living with dementia forget details of their past, lose the skills they developed during a lifetime and behave in an uncharacteristic manner, it becomes easy for others to regard them as somehow not themselves – 'not the woman I married' or 'an empty shell of himself'. While we all change over time to some degree, this more drastic and rapid change can be heart-breaking. Often, through pain or fear, we would prefer to distance ourselves and regard the person with dementia as something different from us, a sort of 'non-person'.
Some philosophers have questioned whether someone who has lost language, the ability to reason and their memory of a continuing personal identity qualifies fully as a human being. This argument about 'personhood' in dementia was at its height in the early part of this century. It is now generally accepted, at least amongst those involved with people with dementia, that they are obviously 'people', but vulnerable to being treated as less than unless there is a conscious effort made to maintain their full human status.
Western tradition has privileged reason, reflection and individualism as important markers of identity. Post (1995) writes about how our Western 'hypercognitivist' society overly-values intellect and fails to adequately recognise the vital nature of other aspects of being human. He argues for a more holistic understanding of what it means to be a person, one linked to being sentient, emotional, relational and autobiographical as well as cognitive (Post 2006).
People with dementia do retain a sense of themselves. This, for example, is seen when people still refer to themselves as 'I' or object to attempts to make them do something they don't want to do. That is, they are sentient and retain a sense of agency until the most advanced stages of the condition. People with dementia maintain typical social human relations and emotions seen, for example, when they become distressed about another's pain, look for people to whom they have been closely attached, show frustration during the struggle to communicate or anxiety about how to behave in a situation that is strange to them.
Not all societies or all people in Western society hold the 'hypercognitist', individualistic view. We are more than our own, isolated, brains. In traditional Maori society, to ask about some individual's memory was a mistake; memory was contained in the community and the place and was not the possession of the individual - "memory resides with the tribe" (Shamy, 1997). Loss of memory did not necessarily mean loss of mana or standing. Every person had their place (turangawaewae) in their whakapapa and on the land; there was no way that forgetfulness could change that. The elder was accepted regardless of his or her cognitive state.
This world view reminds us that humans are social creatures and our place in society is not just related to our personal efforts; we are part of a greater whole. Our community very much defines and identifies us, whether through our job, our family, our church, our interests - bowls or Country and Western - or a community of particular people, deaf or lesbian, for example. Even people who would prefer to shun society must make contact from time to time; their aloofness and wish to avoid human contact is part of their personal identity. We are who we are because of who we associate with and how we interact with them, our shared history and relationships. This is not something that disappears with the onset of memory problems and it is to these sources of identity we should turn to help the person with cognitive impairment retain their human connection and status. "Our task, as moral agents" writes Post (2006), "is to remind persons with dementia of their continuing self-identity. We must serve as prostheses, filling in the gaps and expecting that every now and again, the cues we provide will connect with the person..." (p.229).
Dementia is a condition that lasts years or decades. Initially a person's identity is not an issue, but gradually it may become harder to connect meaningfully with them. Speech becomes fragmented, then reduced to a few words, then completely lost. As it gets harder to communicate, the onus to make and keep in contact lies more and more with the person without dementia. Imaginative efforts to understand the person with dementia are required. These involve learning about the person's former personality and habits, close observation of body language, a willingness to make informed guesses and a lot of trial and error.
For example, a woman living in a rest home refused to leave her room for breakfast or eat it there, despite various attempts and encouragement from others. From their investigations, staff understood she was a devout Catholic who liked to say the Rosary at the beginning of each day. However, she would not say the Rosary unless her room was in an orderly state, suitable for a respectful encounter with God. Once they knew this, the staff came in early to make her bed and tidy up. She could then say her prayers and come out to enjoy her breakfast.
The person with dementia remains aware of and sensitive to others' emotional state for a long time and may reflect this with anxiety, withdrawal or aggression. In 1997, Tom Kitwood wrote about the 'malignant social psychology' of residential homes for people with dementia. Negative interactions with staff erode the resident's 'personhood'. He described sixteen examples of malignant social psychology, such as outpacing (going too fast for the person with dementia to keep up), invalidation (the person's feelings are denied or dismissed as irrelevant) and infantilisation (treating the person patronisingly, as if they were a young child). When these interactions occur, the person is diminished. Alternatively, when they are treated well, their personhood is enhanced. This is demonstrated by the person with dementia being assertive, initiating social contact, affection, relaxation, creativity and other positive responses indicating well-being. These ideas about 'person-centred care' have received mainstream attention and are beginning to be formally actualised via various programmes such as Dementia Care Mapping, 'The Spark of Life' (Jane Verity) or 'The Eden Alternative'.
Our role as a society, as families, friends and carers is to support people living with dementia, to allow them to be themselves as much as possible. This involves recognising that each person is uniquely themselves, and this means moving beyond the current bias that those who cannot remember and reason are somehow less than real people. They are part of a community that can support or erode that sense of self.
A key part of supporting a person's sense of self involves respect for the spiritual dimension of their personality. Spirituality can be described as "that which is essential to our humanity, embraces the desire for meaning and purpose and has personal, social and transcendent dimensions." (Allen & Coleman, 2006 pp. 205-206) Despite the losses in function and capacity, spirituality does not change as cognition declines. As Goldsmith (2004) writes: "Spirituality is no different in dementia: only the brain changes. The intrinsic value of the person is never lost."
Killick (2004) suggests that spiritual powers may even grow as cognitive capacity wanes. As the thoughts and words that clutter our minds reduce, a person can become more aware of deeper aspects of themselves. This can sometimes be seen in a person's creative abilities e.g. as dementia progresses some painters change in style to express themselves more freely. A Japanese idea is that the person with dementia is privileged because forgetfulness allows them to live only in the present moment - a goal towards which Zen practitioners strive. (This seems a rather romantic idea; many people with dementia become anxious when they do not know what is going on.)
Christine Bryden (2005) describing her own experience of dementia indicates that she has become more aware of her spirituality:
At the centre of our being lies the true self, what identifies us to be truly human, truly unique, and truly the person we were born to be. This is our spiritual heart, the centre from which we draw meaning in this rush from birth to death, whenever we pause long enough to look beyond our cognition, through our clouded emotions into what lies within.
However, as dementia progresses people may need more assistance from others to express their spirituality and meet their spiritual needs. This assistance is given by family, friends and caregivers, formal and informal. In New Zealand the Whare Tapa Wha (Durie, 1998) or 'bio-psycho-social-spiritual' model acknowledges the importance of spirituality for health. Many health and aged care policy documents such as the Health of Older People Strategy (2002), Palliative Care Strategy (2001) and Aged Residential Care contracts, refer to spirituality, but it is uncertain the extent to which such holistic care is actually implemented on the ground.
To conclude: Holistic models should enable carers to attend to the whole person – including the often neglected spiritual aspects – and not just focus on the disease, to the benefit of all people, with or without dementia.
The last words belong to a woman with dementia:
Sometimes I picture myself like a candle.
I used to be a candle about eight feet tall-burning bright.
Now every day I lose a little bit of me.
Someday the candle will be very small.
But the flame will be just as bright.
Burning Bright (Noon, 2003 in Killick 2004)
Dr Chris Perkins (MB ChB (Otago) FRANZCP, Diploma of Professional Ethics (Auckland) is Director of the Selwyn Centre for Ageing and Spirituality. She is a psychiatrist, with particular expertise in mental health issues affecting older people and in intellectual disability psychiatry.
References
Allen & Coleman ( 2006) Spiritual perspectives on the person with dementia: identity and personhood in Dementia: mind, meaning and the person Ed. J.Hughes, S. Louw & S. Sabat, Oxford, Oxford Medical Publications pp.223-234
Bryden, C. (2005) Dancing with Dementia: my story of living positively with dementia London, Jessica Kingsley Publishers
Dementia Care Mapping http://www.brad.ac.uk/health/dementia/dcm/ Accesssed 02/04/2012
Eden Alternative http://www.edenalt.org/about-the-eden-alternative Accessed 02/04/2012
Goldsmith, M. (2004) In a Strange land...People with dementia and the local church: a guide and encouragement for ministry 4M publications, Southwell
Killock, J. (2004) Dementia, identity and spirituality in Spirituality of Later Life, on Humour and Despair Ed. MacKinlay E. Binghampton NY Harworth Pastoral Press, p 59-74
Kitwood, T. (1997) Dementia re-considered: the person comes first. Buckinghamshire Open University Press,
Ministry of Social Development (2001) Positive Ageing Strategy Accessed 02/04/2012
Ministry of Health (2002) Health of Older People Strategy Accessed 02/04/2012
Ministry of Health (2001) Palliative Care Strategy Accessed 02/04/2012
Post, S. (1995) The Moral Challenge of Alzheimer Disease, Baltimore, John Hopkins University Press.
Post, S.(2006) Respectare: moral respect for the lives of the deeply forgetful in Dementia: mind, meaning and the person Ed. J.Hughes, S. Louw & S. Sabat, Oxford, Oxford Medical Publications pp.223-234
Saks, J. (2002) in Goldsmith, M. (2004) In a Strange land...People with dementia and the local church: a guide and encouragement for ministry Southwell 4M Publications,
Verity, J. The Spark of Life Programme http://www.dementiacareaustralia.com/index.php/biography.html Accessed 02/04/2012
Achieving a ‘good death’: supporting health professionals to meet this challenge
Bridget Marshall
Death is a certainty and more often than not we try to avoid thinking about it. However if we do think of our own death, most of us hope it will be pain free, without suffering, relatively quick, and not create an undue burden on those we love . The process of dying might also allow enough time to complete certain tasks or to be with certain people. Most of us would like to have achieved the things in life that are important to us and go towards our death with a sense of peace.
There is a growing body of research that attempts to understand the social aspects of death and dying that makes it clear that what people want and need at the end of life can vary considerably. Many of these studies have focused on the concept of a 'good death', which involves taking into account the differing priorities based on the dying person's beliefs, cultural background and individual social circumstances and the circumstances of their disease. Studies asking patients and their families what constitutes a 'good death' reported factors that centered around aspects of self-control and respect as an individual, completion of a life well lived, not being a burden on others, dying in the preferred place, and spiritual and physical comfort (Pinson et al, 2011; Miyashita et al, 2008,) In contrast, studies that centered on health practitioner perspectives found that a 'good death' was more focused on the importance of symptom control, the person being aware they were dying, and family being aware and prepared for the person's impending death (Griggs, 2010).
Therefore, while caring for and supporting those who are dying and their family/whānau can be an enormously rewarding aspect of work for health care professionals, it can also be complex and at times very challenging.
Health professionals, especially those working and caring for the dying, constantly strive to meet the needs and wishes of the patient and their family/whānau. They do this within the constraints of knowledge and evidence (scientific and sociological) and the resources available to them. There is willingness and urgency for us as health professionals to 'get it right' and support the kind of death that could be considered to be a 'good death' for the person we are caring for.
There have been many advances in palliative medicine since the first modern Hospice service was established in the United Kingdom in the 1960s. This includes better understanding of symptom management, use of analgesics in complex pain syndromes, new medications and delivery methods, and acknowledgement of individual choices and family's needs and expectations. Recognition of the need to care for the whole person is seen as one of the fundamental principles of palliative and end of life care. This approach includes the need to provide care that meets not only the physical needs of the person but also their spiritual, cultural, social and emotional needs.
Hospices are recognised as providing the 'gold standard' of care for the dying and their family/whānau. There are 32 Hospices listed on the Hospice NZ website, and these facilities provide a mix of in-patient and community care for the dying person within the region they serve. However only 6% of those who die in New Zealand die in a Hospice, with the majority of New Zealanders dying in hospital (34%), or for those over 65 dying in aged residential care (31%) (PCC, 2011).Therefore, there is an imperative to transfer that best standard of care from Hospices to these other places of care.
One of the more recent tools aimed at supporting the transfer of best practice model of palliative care to non-Hospice settings has been end of life care pathways. Care pathways have been used in health since the 1980s as a way of aiding complex decision making and organising care processes for a specific group of patients over a specified period of time. The end of life pathway available in New Zealand, and endorsed by the Ministry of Health, is the Liverpool Care Pathway for the dying patient (LCP).
As suggested by its name, the LCP was developed in Liverpool, England in the mid-1990s. It was a joint initiative of the Royal Liverpool and Broadgreen University Hospital National Health System Trust and the Marie Curie Palliative Care Institute in Liverpool. In the UK, the LCP is recognised as a model of best practice and is recommended by their Health Ministry in their End of Life Care Strategy (DH, 2008). The LCP is now used in 21 countries around the globe and has been translated into six languages.
Care pathways not only document the treatment that has been given but also prompt clinicians in appropriate goals of care. It is not a prescriptive tool, and as such will not determine what the health professionals prescribe and when. Each instance of the care pathway is specific to the individual patient and is designed to capture the dynamic, changing nature of the person's journey. Individual patient needs are highlighted and thus can be addressed and evaluated individually. But at the same time, by having standardised goals of care, the same level of care can be transferred to all care settings including acute hospitals, aged care facilities, people's own homes, and hospices.
The LCP is designed to be used in the last days or hours of life when all reversible causes of a patient's deteriorating condition have been assessed and managed appropriately. If a person's condition improves (e.g. a positive change in conscious level, functional ability, mobility, or the ability to perform self-care) the carers will stop using the New Zealand LCP to guide care, and reflecting the person's condition, commence an appropriate plan of care.
The recognition and diagnosis of dying is always complex, irrespective of a person's medical diagnosis or history. A multidisciplinary team decision, involving the doctor, nurse, and other health professionals is important in making this clinical judgement. Communication with the patient's family/whānau is pivotal and all decisions leading to changes in care should always be communicated to both the dying person (if possible and appropriate) and their family/whānau.
The LCP is family centred, focusing not only on the physical aspects of care, but also on communication, and the spiritual and cultural care of the person and their family/whānau. The New Zealand LCP document has been altered to include specific goals that New Zealand deem essential when caring for the dying, including the addition of goals relating to cultural care. Currently, there is a Health Research Council of New Zealand funded research project underway entitled 'Culturally Appropriate End of Life Care for Māori', with the New Zealand LCP document being used as a framework for the research.
The New Zealand LCP is now being used in over 300 sites across hospices, hospitals, in people's homes and aged care settings within New Zealand. The LCP supports but does not replace clinical judgement and is not a treatment in itself. The use of the New Zealand LCP must be underpinned by a robust on-going education programme and forms part of the continuous quality improvement programme of an organisation. This ensures that all health professionals who are caring for the dying are constantly learning and reflecting on best practice end of life care.
The use of tools such as the LCP has been consistently demonstrated to benefit the practice of health care professions in caring for those who are dying. In research conducted in New Zealand acute care and aged care settings health professionals were asked whether they felt that their care had changed since using the LCP. They responded that their communication both with families and other health professionals had improved, and in addition, there were also marked improvements in teamwork, documentation, and clinical practice. It was felt that the health professionals using the LCP were better able to address patient symptoms and their confidence in how to offer high quality palliative care had increased, both in regard to the patient, and to the patient's family/whānau. (Clark et al, 2011, Clark et al, 2012)
Usually when a person dies they are not in isolation. In addition to family members, many health professionals are often involved in the process, such as medical staff, nurses, care assistants, chaplains, therapists, pharmacists, social workers and carers. The LCP document provides the scaffold for all of these disciplines to meet and coordinate around the care of the dying person.
Whatever people perceive to be a 'good death', health professionals charged with caring for those nearing the end of their life and their companions have a responsibility to support them. For the person dying a 'good death' will revolve around being pain free, treated with respect and being at peace. For the family/whānau, a good death will involve comfort of the dying person, and having access to that person in the last hours. For health professionals, a 'good death' will involve a balance of the needs of the dying person with access to medication and other resources, and the needs (or limitations) of the organisation or location where the dying person is being cared for. Health professionals need to appropriately utilise the resources available to them: be it palliative care expertise, medications, and clinical pathways. Clinical tools such as the LCP support health professionals facing the challenges of helping people to achieve a 'good death' regardless of what the person is dying from, or where they are dying.
Bridget Marshall RN MN is the Lead for the National LCP Office for NZ.
The Ministry of Health funded National LCP Office was established in 2008 to promote and coordinate the sustainable implementation of the LCP across all District Health Boards in New Zealand.
References
Clark, J, Sheward, K., Marshall, B., Allan, S. (2011) Staff perceptions of end-of-life care following implementation of the Liverpool Care Pathway for the dying patient in acute care setting: a New Zealand perspective. Journal of Palliative Medicine. 15(4); 468-473.
Clarke, J., Marshall, B., Sheward, K., Allan, S. (2012) Staff perceptions of the impact of the Liverpool Care Pathway in aged residential care in New Zealand. International Journal of Palliative Nursing. 18(4), 171-178.
Department of Health (2008) End of Life Care Strategy available on http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_086277
Griggs, C. (2010) Community nurses' perceptions of a good death: a qualitative exploratory study. International Journal of Palliative Nursing. 16(3), 139-148)
Miyashita, M., Morita, T., Sato, K., Hirai, K., Shima, Y., Uchitomi, Y. (2208) Good death inventory: a measure fro evaluating good death from the bereaved family member's perspective. Journal of Pain & Symptom Management, 35(5): 486-98.
Palliative Care Council (2011) National Health Needs Assessment for Palliative Care, Phase 1 Report: Assessment of Palliative Care Need Available from: http://www.palliativecarecouncil.govt.nz/pub/national-health-needs-assessment-palliative-care
Pinzon, E., Carlos, L., Matthias, C., Isabel, K., Stephan, L., Sabine, F., Martin, W.(2011) Preference for place of death in Germany. Journal of Palliative Medicine. 14(10); 1097-103.
Euthanasia: A Pacific Island (Tokelauan/Samoan/Cook Island) perspective
Penehe Patelehio
The man who had Alzheimer's disease and was dying had struggled for so long. He had endured memory loss for many years. All the while his daughter had taken very good care of him. One day, towards the end of his life she asked him, "Do you know who I am?" and he replied, "No, I don't know who you are, but I love you."
For us, life is valued above all things. Traditionally, for Polynesian cultures, whatever the medical situation of a person, that person should always be cared for and looked after. Our Polynesian culture and our Christian values teach us that life is a gift given by God. Life is not something to be ended by an individual's choice, as with assisted suicide or euthanasia. The opportunity to care for elderly parents is also seen as a gift and a privilege to that family.
When someone is ill or dying, the idea of assisted-suicide or euthanasia is entirely foreign to us. There is no word in our language for this concept and consequently it does not enter into our thinking. The opportunity to care for and look after someone who is ill or dying/suffering is seen as a blessing even though it may present significant financial and other challenges. At such times the extended family and community networks come to the fore – it is common for immediate and extended family and community members to visit, provide food, and massage and converse with the person who is ill. No-one would ever be left to die alone.
Supporting the family and the person concerned through ongoing daily practical and emotional support enables the sick person to find ways to feel better and achieve the best possible quality of life during the latter stages of their life journey.
While we strive to do all that we can to alleviate the suffering, the most important thing is for a person to experience the best care they can in order to live the final part of their life with dignity and love. This calls for us all to act with dignity and love and remain present to the person who is dying.
Rev Fr Penehe Patelehio is the Parish Priest of Holy Family Parish, Porirua, Wellington.
Editorial Euthanasia: A case of ‘selective listening’?
Maryan Street, author of a bill which seeks to legalise euthanasia and physician-assisted suicide in New Zealand, has repeatedly made the point that "the social conversation has moved" since 2003 when the last Bill was put forward. I agree with her.
But, whereas Street means to infer (without real evidence) that there has been a shift in opinion towards favouring change, I mean something quite different. I mean that in the last 10 years the social context has changed and is now characterised by a range of different concerns. These concerns, articulated in various social conversations, lead me to a very different conclusion about the desirability of euthanasia.
Firstly, there has arisen a new conversation about the dangers of growing old in New Zealand. Elder abuse is now a significant issue confirmed, sadly, by recent reports of family members in Christchurch standing over elderly relatives and intimidating them to hand over earthquake compensation pay-outs. The reported case of the woman who died a horrific death from scabies, allegedly attributed to carer neglect, is yet another example. Age Concern (NZ) notes that 1 in 40 of all elderly people experience some form of abuse or neglect, equivalent to two people being abused every hour of the day. Given that the reported cases represent approximately 16% of the total abuse cases, that would amount to a total of 6,250 cases per year or 17 per day. Shamefully, 80% of abuse is committed by family members even when that person is in residential care.
Then there is the conversation that has followed from the reporting of the (Auckland) results of the New Zealand Longitudinal Study of Ageing. Over half of those questioned were lonely and nine per cent described themselves as "severely" or "very severely" lonely. Depression is also a significant factor for more than 20%, and 40% report experiencing everyday discrimination, mostly because of age. The study further notes that elderly people are facing a future of less housing and income security. These figures are of huge concern when considering research which shows that persistent requests for euthanasia or assisted-suicide are related to loss of control, social isolation or being a burden rather than a desire to avoid a painful death.
There has also been a lot of talk about the rising number of suicides amongst elderly New Zealanders. Dave Armstrong (The Dominion Post, 24 September) has challenged us to get the issue of suicide into the open and to recognise the "complex factors" which contribute to the problem including "relationship breakdowns, depression and old people feeling they are a burden." Making suicide easier to access is not what Armstrong and others have in mind; it is hardly a caring, let alone ethical, solution to this problem and it will send a mixed message to our young people at a time when youth suicide remains a growing problem in areas such as Northland. To those who say this is not what Street's Bill is aiming to do, it should be noted that her proposed bill is not just for people who are dying and, moreover, it includes persons, young and old, with irrecoverable mental illnesses.
These conversations point to powerful, deep cultural and societal forces at work. Personal choice is not something we exercise in splendid isolation; our choices are always constrained by the pressures and influences around us and they impact on others. What a person believes he or she should do is not necessarily the same as what an individual really wants. No amount of safeguards can protect people from being caught up in these powerful currents.
While a law change may well benefit a very small number of strong-minded individuals, in reality very few people are like that. As Baroness Ilora Finlay notes, in the face of illness and increasing dependency most are "ambivalent, oscillating between hopelessness and hope, worrying about being a personal or financial burden on those they love or that their own care costs will erode their descendants' inheritance." The end result of what one commentator has called the "continual apology for your own existence" would be significant numbers of people being steered towards euthanasia. This is neither free choice nor what Street has called "vigorous self-determination".
We should be very afraid of the consequences that would follow the legalisation of euthanasia, in particular the way it would undermine many people's will to live. While supporters of Street's Bill argue that a change in the law is about 'choice', the real fear is that we will realise all too late that its effect will be to steer people down a one-way-dead-end street.
Maryan Street and I have obviously been listening to very different conversations. If as a society we are going to properly discuss euthanasia, it must occur as part of a fully informed social conversation rather than one based on selective listening.
If our politicians decided that euthanasia was too dangerous in 1995 and 2003, then it is even more so now given the way "the social conversation has moved."
John Kleinsman is director of The Nathaniel Centre
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