Issue Eight

“We who lived in concentration camps can remember the men who walked through huts comforting others, giving away their last piece of bread.   They may have been few in number, but they offer sufficient proof that everything can be taken from a person but one thing: the last of the human freedoms – to choose one’s attitude in any given set of circumstances, to choose one’s own way.”   Victor Frankl (1959) 

In New Zealand there has been considerable discussion recently about euthanasia, or more correctly, assisted suicide.   Proponents of assisted suicide argue that it is the ultimate choice and promote it as helping the individual achieve “death with dignity”.   The debate has focussed around two recent events both highlighted in the media – the advent of the so-called “exit bag” and publication of a book by Lesley Martin entitled, “To Die Like a Dog.” 

Spokesman for the Auckland Voluntary Euthanasia Society, Jack Jones, has described the plastic “exit bag” as a “watershed for people wanting to achieve a dignified exit.”   The “exit bag” is “made of ‘robust’ plastic” and has a “velcro strapping device to tie it shut. It is vacuum packed and comes with a warning, ‘Do not put this bag over your head. It could kill you…” The bag was obtained from Australian euthanasia advocate Dr Philip Nitschke. 

In her book, “To Die Like a Dog”, Lesley Martin describes the death of her mother in 1998. She had been terminally ill for some five months. At the time of her mother’s death, Lesley, a trained intensive care nurse and the primary care giver, was alone and exhausted from sleep deprivation. She had been unable to have her mother admitted into the local hospice and had become deeply distressed at her mother’s suffering from end-stage cancer. Because of a “promise” made earlier to her mother she felt compelled to hasten her mother’s death by  “suffocating her with a pillow.” 

Chicago physician, Dr Mike McDonnell, has recently given a timely reminder to pay close attention to the language being employed in the assisted suicide debate. The “media has moved euthanasia from ‘mercy killing’ to an ‘easy, painless death’ and now to a ‘Right to die’ or ‘Death with dignity.’ This is because Americans strongly support things attached to rights and dignity. Now something distasteful seems palatable.” He uses the phrase, “verbal engineering”, to describe the process whereby we use language to cloak the nature of certain actions in a way that disguises the deeper reality of what is being done. 

Proponents of assisted suicide often equate the project of death with the death of a pet animal - “to die like a dog” has become a catch-cry.   However, we are much more than household pets.   We should not lose sight of the fact that it is precisely those things that differentiate us from animals that define us as persons.   The phrase “dying like a dog” suggests a certain blindness to those things that truly make us human, and implies a diminished understanding of personhood. This approach to the assisted suicide debate is itself an indication that the practice of assisted suicide ignores or short-circuits many fundamental personal needs and that it relies on a reductionist and impoverished view of what it means to be fully human. 

Doubtless, there are times in life of great stress and suffering which all impact on the way we approach death and dying.   Indeed, the experiences of suffering can be so profound that those who have journeyed through them want to make a pre-emptive strike against any or all similar forms of suffering. Frequently this factor influences the motivation for assisted suicide. During my time working as fellow-in-ethics at Memorial Sloan-Kettering Hospital in New York, I recall meeting a husband and wife, both concentration camp survivors, who had made a pact with each other to seek physician-assisted suicide should either of them become terminally ill. In my initial meeting with them I was deeply moved to see the tattooed serial numbers on their wrists – a poignant reminder of the unspeakable suffering they had already endured. In the light of their past experiences it was hardly surprising that they did not wish to endure any further unnecessary suffering and that they should speak of assisted suicide as being a logical way of dying with dignity. Their story left the palliative care team with a renewed understanding of the very real and profound nature of existential suffering, and of the way in which our experiences of and attitudes towards suffering add to the layers of complexity in the assisted suicide debate. 

As the palliative care team and other healthcare professionals explored treatment options with the couple there was considerable discussion about their desire for assisted suicide. However, within the caring environment of Memorial Sloan-Kettering Hospital, as their physical, spiritual and emotional needs were actively explored and met, the couple arrived at a different perspective on death. They began to see that dying with dignity had another and richer meaning.   Through the holistic focus of the palliative care team they were gradually reassured that their very real fears could be faced in a different way from assisted suicide – a way that brought them healing and enabled growth at a deeper personal level than they had previously thought. Not only was it now possible for them to die with dignity, it was also possible to die in a way that made the act of death the ultimate act of healing and integration. The reality and darkness of death had become transformed – for them and also for their family and for their caregivers. In their terminal illness and dying they witnessed the full flowering of their love for each other, were reassured of their place and value in the community and achieved a peace that would not have been possible had their lives been short-circuited by assisted suicide. 

In the courageous flowering of their personhood I came to witness what Victor Frankl meant when he spoke about the capacity to remain our own person, even in the face of great adversity, as being “the last of the human freedoms.”    Frankl equates this choice of attitude as living with dignity.   For him, dignity involves living according to deeply cherished desires, desires not dependent upon the physical or emotional circumstances that an individual finds him or her self in.   Such an understanding of personhood is a truly holistic one.

In keeping with this, Frankl would describe a dignified death as one where the individual experienced him or herself as being cared for, and where he or she had their spiritual, relational and emotional needs met, together with their physical needs.   In the presence of such holistic care those dimensions that most fully characterise us as persons, far from being denied or extinguished, are actively nurtured and cherished.   Moreover, in living out the philosophy of palliative care we are able to clearly demonstrate the giving and experiencing of love and care that is at the heart of the Christian tradition – the golden rule. The onus to provide effective palliative care remains, of course, a significant challenge for both the hospice movement and for the wider community to provide. The media’s recent focus on assisted suicide underscores this challenge. 

Assisted suicide makes eminent sense when death is viewed as being meaningless; when we see it as nothing more than the full stop at the end of the sentence called life. Proponents of assisted suicide are challenging us to rediscover and communicate the deeper meanings within death and dying or even that there is a meaning. To yield to the logic of assisted suicide is to rob the individual and community of wonderful possibilities for growth through the exercise of caring and to give up on the deeper dimensions of personhood. Dying with a plastic bag over your head is not death with dignity. 

Postscript
In 1940 Viktor Frankl was made head of the neurological department of Rothschild Hospital, the only hospital for Jews in Vienna during the Nazi regime. He made many false diagnoses of his patients in order to circumvent policies that required euthanasia of the mentally ill.
___________________

Rev Michael McCabe, PhD
Director
The Nathaniel Centre

©
2002

The human condition is a mass of contrasting states – wellness and sickness, youth and old age, vigour and increasing frailty, obesity and thinness, baldness and hairiness – the list could go on interminably.   Many of the processes cannot be controlled – they are simply a part of what it means to be human.   Others, for example excessive weight gain or high blood pressure, can be helped by lifestyle changes such as improved nutrition and increased exercise.

Yet increasingly, these life processes are being targeted by modern medicine and the pharmaceutical industry for treatment as if they were illnesses or diseases which require medication – a process termed medicalisation. This paper will look at menopause and the prescribing of Hormone Replacement Therapy (HRT) as an illustration of this process. 

Medicalisation is not a new term.   It was a concept that was coined and explored by Ivan Illich in the mid 1970’s.   Illich argued that death, pain and sickness are part of being human and that all cultures developed ways of helping people to deal with these states.   How successful individuals are in coping with these realities defines how healthy they are.   It was Illich’s view that modern medicine has destroyed these cultural and individual capacities and instead, seeks to treat, control and defeat sickness, pain and death. 

The desirability of seeking to reduce the severity of illness and pain appears inarguable. There is however, justifiable debate over the medicalisation of many of life’s processes or problems such as birth, ageing, death, sexuality, baldness, unhappiness and cellulite. Richard Smith, editor of the British Medical Journal   (2002, pp.883-885) generated a list of almost 200 “non-diseases” in an article designed to draw attention to the increasing tendency to classify people's problems as diseases. By “non-disease” he meant “a human process or problem that some have defined as a medical condition but where people may have better outcomes if the problem or process was not defined in that way.” 

Smith recognised that having a condition labelled as a disease brought with it both benefits and problems.   The benefits mean that the individual is likely to gain sympathy rather than blame. There is also likely to be exemption from commitments and various benefits such as sick pay, free prescriptions, insurance payments, and access to facilities denied to healthy people.   Problems include possible loss of control such as being locked up or having one’s body invaded.   Insurance, a mortgage, and employment might be less available.   The person may become labelled as a victim, with this label contributing to the person becoming flawed and incapable of “rising above” their problem.

It is argued that pharmaceutical companies with their direct-to-consumer advertising encourage people to seek medical attention for conditions or symptoms that might otherwise not need to be treated. The companies seek to raise the status of an undertreated or underdiagnosed problem to that of being a condition or a disease that is widespread, serious and which requires treatment. The public can thus easily be educated into “being sick” and believe that they are sick, even when expert appraisal would determine that they are not. This self-reported morbidity can be hugely misleading. Sen Amartya points out that despite huge spending on health, people in the US are apparently less healthy than people in Bihar, India where there is a much reduced life expectancy (2002, p.860).  

This corporate construction of disease relies on the willingness of the medical profession and the general public to believe that interventions work, even when there is no evidence or what evidence there is, does not support this.   This phenomenon has been well illustrated by the ever-growing enthusiasm for and prescribing of HRT since 1990.

HRT was first used in the United Kingdom in 1956 to assist women who were suffering from severe symptoms of menopause. Menopause is the time at “mid-life” when a woman has her last period and it happens when the ovaries stop releasing eggs.   For most women, this is a gradual process and the symptoms, while unpleasant, are not disabling. HRT involves the use of artificial oestrogen and (unless the woman has had a hysterectomy) progestogen to replace the natural hormones oestrogen and progesterone which are no longer produced by the ovaries after the menopause. It is very effective at alleviating hot flushes, night sweats, vaginal dryness and it also reduces the rate of bone thinning, which occurs when oestrogen levels drop at menopause. 

In 1991, women’s health activist Sandra Coney published a book on the menopause industry in which she analysed the increasing medicalisation of menopause. It had become increasingly common for menopause to be referred to as oestrogen deficiency, hypo-oestrogenism and ovarian dysfunction.   She quotes the words of UK gynaecologist Dr John Studd who called menopause “ a multi-system deficiency disorder” and who said that menopausal women were “wretched women undergoing general atrophy.” (Coney, p.66) 

Coney also discussed society’s expectations of women and the pressure on them to be “feminine forever.”   Menopause is characterised by those in the “industry” as the time in their lives that women were dangerously on the edge and a time when they feared redundancy of their reproductive and sexual selves.   Included in the book are photos of advertisements which portray menopausal women as anxious, weepy and unattractive with captions such as “when ‘change of life’ seems the end of life”.   Conversely, advertisements of women who are taking HRT show them as happy and vibrant, with one accompanying caption stating: “ So a woman can enjoy continuing to be a woman.” 

By the mid to late 1990’s, HRT was being touted as a cure all for the ageing woman.   It was increasingly prescribed, not to control severe symptoms of menopause but for the relief of tiredness, insomnia, anxiety, memory loss, loss of sex drive and to delay the onset of Alzheimer’s Disease and the prevention of heart disease. A study on the use of HRT by 200 women, commissioned by HRT Aware, an organisation funded by HRT manufacturers, was published in May 2002.   It was widely publicised and the headline “Life's fab at 50 for the golden girls” in the Daily Express, 8 May 2002 and “Happier, healthier, sexier - and over 50” in the Daily Telegraph the same day are headlines representative of the glowing publicity the study received in the British press. The study was so effusive about the benefits of HRT that it said women on HRT should be called HRH – Hormone Rich and Happy. 

By May 2002, it was estimated that between a fifth and a third of women over 50 in Britain used some form of HRT, with the NHS spending about £150 million a year on HRT prescriptions (Daily Telegraph, 24 March 2002).   A contemporaneous article in the Dominion (23 March 2002), reporting a trial of a new hormonal nasal spray, estimated that about 15% of New Zealand women used some form of hormone replacement therapy.   The doctor in charge of the trial stated that this figure reflected the “limited availability of the therapy” and the lack of, or only partial, subsidies on various HRT treatments. The inference to be drawn from her comments was that HRT should be made more available. Sandra Coney’s response was that evidence published in an article in the NZ Medical Journal in 1997 showed usage to be higher than 15% but in any case, the issue was not over the availability of HRT but whether women needed it at all. She cautioned that “we should be very cautious about promoting HRT to women” as the benefits were questionable and the risks gave cause for concern. 

This difference of opinion between the medical profession and consumer-led groups has been mirrored in the United Kingdom. The Menopause Research Information Service claimed that complications of HRT are “happening under doctors' noses and they still refuse to see it.   HRT is being promoted with false claims. All it is doing is giving women a feeling of wellbeing - and susceptible women are ending up with fatal diseases.” (Daily Telegraph, 24 March 2002)

Advocates of HRT dismissed these assertions as unscientific, emotive and scaremongering and they asserted in turn that opponents of HRT were saying that women past their child-bearing years should not expect to remain vibrant, vivacious, healthy and sexually active.   Neither could they expect to avoid such symptoms of the menopause as depression, hot flushes and night sweats. As late as March 2002, the consensus among specialists in HRT was that the risks of breast cancer and blood clots that it brings are “slight” and should be considered against the benefits. A British consultant, the same Dr John Studd referred to in Coney’s book and termed a “great advocate of the treatment” admitted: “The benefits are not as clear cut as they appeared to be five years ago. We did think it would help women with established coronary heart disease, but it doesn't. The same applies to strokes. It almost certainly prevents strokes and heart attacks. But once you have these, it is not going to help.” (Daily Telegraph, 24 March 2002)

In July this year, the huge multi-national Women’s Health Initiative trial on HRT was halted in the United States. Three months later, the British, Australian and New Zealand arms of the study were also stopped. The trial’s Data Safety and Monitoring Board had determined that combined oestrogen and progesterone, far from “almost certainly” preventing strokes and heart attacks, increased the incidence of heart disease, strokes, venous thromboembolism and breast cancer. Of major significance was the finding that within the first year of taking HRT, the risk of blood clots doubled, meaning that for every 10,000 women, there would be 18 extra adverse events.   Authorities determined that the benefits from HRT, notably a reduced incidence of colorectal cancer and hip fractures, were significantly outweighed by the risks. 

The cost of exposure to risk was considered high, particularly when it is accepted that the women taking HRT are “well” women.   Certainly, HRT is prescribed and is effective for the relief of what can be debilitating menopausal symptoms but, unpleasant as they can be, menopause is not a lethal condition. Many women are on HRT for prevention purposes, such as those at increased risk of osteoporosis.   Still others take it for never proven or now discredited benefits. The good news for these women is that there are alternatives to HRT, both of the pharmaceutical and natural kind and a number of these have been the subject of well-conducted research. 

What are some of the lessons from the medicalisation of menopause and the infatuation with HRT?   One might go back to the natural order and ask the question why has nature determined, with the evolution of countless generations of women, that the secretion of hormones should alter at and after menopause?   If, as seems logical given the nature of evolution, that there are valid reasons that the hormones are restricted to the reproductive phase of a woman’s life, is there a likelihood of causing harm by modern medicine attempting to remedy the putative deficiency? 

There should also be a heightened awareness of the dangers of the medicalisation of normal human experience and of “disease mongering.”   A General Practitioner, reflecting on the Women’s Health Initiative study, wrote to the British Medical Journal:

This should make us cautious of the role of pharmaceutical companies….   Chronic disease is the “Golden Goose” for the pharmaceutical industry …. These drugs represent huge vested interests in chronic disease promotion and proliferation. (Spence et al, 2002 pp.113-114) 

The public needs to know more about the controversy surrounding definitions of diseases and conditions and that there is a balance which should properly be sought between undertreatment and medicalisation. 

Finally, the HRT affair underlines the need for objectivity in assessing the efficacy of new drugs and a distancing between the marketing campaigns of the pharmaceutical industry, the medical profession and the general public.   The World Health Organisation has identified there is “an inherent conflict of interest between the legitimate business goals of manufacturers and the social, medical and economic needs of providers and the public to select and use drugs in the most rational way.”   Direct to Consumer advertising and the pharmaceutical industry's marketing strategies are well researched, with the medical profession being constantly visited, entertained, treated and rewarded in different ways for prescribing particular drugs.   The medical profession and consumers alike must have access to independent and objective information on medical conditions and on life’s processes. 

It is essential therefore, that drugs and therapeutic claims made on their behalf, are assessed by objective and independent bodies.   In New Zealand, this role could be filled by the New Zealand Guidelines Group, which is committed to promoting all aspects of effective practice in the health and disability sector, in particular the use of evidence-based best practice guidelines. The role could also be filled by the Pharmacology and Therapeutics Advisory Committee (PTAC) whose primary purpose is to provide PHARMAC with independent advice on the pharmacological and therapeutic consequences of proposed amendments to the Pharmaceutical Schedule. 

HRT is a conspicuous example of the current approach to the medicalisation of life’s normal processes and the success of pharmaceutical companies persuading healthy people that they are sick. There is a consistent message, both overt and subtle, that to age is bad or more accurately, to display the signs that inevitably accompany ageing, is bad.   The western world has been wooed and largely won over by clever marketers who constantly sell the message that not only is there a pill for every ill but there is an ill for every pill.   But, as refection on the medicalisation of menopause has demonstrated, there are dangers in taking unnecessarily to the sickbed. 

References:
Coney,S. (1991). The Menopause Industry.   A Guide to Medicine’s Discovery of the Mid-life Woman. Auckland: Penguin.

(2002, March 24). HRT: Miracle or Killer? Daily Telegraph.

Illich, I. (1976). Limits to Medicine. London: Marion Boyars.

Sen, Amartya. (2002). Health: Perception versus Observation. British Medical Journal, 324, 860-861.

Smith,R. (2002).   In Search of ‘Non-disease’. British Medical Journal, 324, 883-885.

Spence, D. et al (2002). Cook the Goose.   British Medical Journal, 325, 113–114.

(2002, March 23). Women ‘need more hormone replacement therapy choice’ The Dominion

UK Social Issues Research Centre. (2002). Jubilee Women Fiftysomething women - lifestyle and attitudes now and fifty years ago. (http://www.sirc.org/publik/jubilee_women.shtml)

World Health Organisation. (1993). Clinical Pharmacological Evaluation in Drug Control. Copenhagen: WHO (EUR/ICP/DSE 173).
___________________

Sharron Cole is a member of the Hutt Valley District Health Board and a member of the Panel of Advisors for The Nathaniel Centre

©
2002

The word grief comes from a Latin word ‘gravare’ which means deep sorrow. Grief is a deep sense of loss, which is part of the human condition. For both the healthcare professional and the ordinary person, ethical decisions often need to be made in a grief-filled context. 

A sound clinical model for ethical decision-making will always seek to take full account of both the external and internal world of the person facing impending loss. That person may be terminally ill, or may be close to someone who is dying.  

Decisions at the end of life concerning the withholding or withdrawal of treatment for a particular patient generally follow thoughtful and well-considered processes, in which all perspectives are thoroughly evaluated. Despite this very respectful and due process being followed, I have frequently observed the process unravel at precisely the point where it seemed a consensus-decision was imminent. For the casual observer there is little to indicate why such a valuable process should break down.

The difficult decisions that engage us most fully are those in which we are personally involved. They tend to be those situations in which our own stories and journeys are caught up, and challenged by, the outcome of the specific issue at hand. At these times we are very vulnerable, and inevitably bring our individual hopes, fears and personal histories into the multifaceted texture of the ethical decision-making process.

Very often this experience is one of being thrust into a situation with little prior warning or preparation. 

Dealing with death is part of being human, and cannot ultimately be avoided. Grieving involves deep pain, but it is a natural consequence of separation and the healing process, which should ordinarily be manageable and limited in time. How grief interacts with ethical decision-making can depend upon when the grief process begins, and what stage has been reached at the time that substantive decisions are being made about treatment of the dying person (see page… for an outline on the stages of grief). How the grieving process unfolds can also reflect the person’s prior experience of loss and the coping techniques they have adopted in the past. 

My experience and reflection on many years of involvement with the dying and their loved ones leads me to believe that in the time of transition found at the end of life, there is often a delicate interplay between ethical decision-making and two particular types of grief, anticipatory grief and unresolved grief. This helps to explain why the process of ethical-decision making can be so complex and why it can unravel at times.

Anticipatory grief is a grieving process that occurs when a patient or family is expecting a death, or in some cases when a family is faced with a condition such as Alzheimer’s Disease. Anticipatory grief is beneficial in that it can give people more time to adjust to change, to get used to the reality of the impending loss and to complete unfinished business with the dying person. It is a psychological mechanism that prevents us from being overwhelmed, as we would be when death is unexpected. 

Because anticipatory grief has similar stages as those experienced after a death, such as denial, guilt, anger, and depression, it is essential for those involved in ethical decision-making at the end of life to be aware that the symptoms of particular stages may manifest themselves in ways which can suddenly derail an apparently sound ethical process. Recognition of where the person is in the grieving process, even though death has not yet occurred, may mean that the ethical discussion has to be sidelined for a short time in order to provide specific support to the grieving person or persons. This “time-out” will ultimately help to ensure both a good ethical decision-making process and a good grieving process for all those involved.

While grief is a natural and inevitable part of life, and while all grief removes a sense of the familiar and the predictable, unresolved grief can be defined as grief that impacts adversely on the individual or community precisely because the process of grieving is incomplete or has been unsuccessful. The grieving process is learned. To the degree that the individual has learned to cope with loss and separation the more he or she is better equipped and better able to meet the various challenges and possibilities in life. Unresolved grief acts as a very powerful barrier to consensus building particularly when the discussion occurs in times of transition such as at the beginning and end of life. These times of transition are powerful because they inevitably throw into sharp relief so much of the individual and communal story. 

In a culture which does not favour the free and open expression of emotion, coping with grief by avoidance may be a strategy a person has used in the past to deal with loss. Loss needs to be confronted, understood and accepted as a necessary personal process to allow resolution, and avoidance or escape from grief can increase the probability of unresolved grief impacting adversely on future loss situations. In some cases an unresolved but relatively minor loss may have a substantial impact at a later date on a major and life-altering loss, as a major new loss often brings up echoes of past losses. If a family member still has intense unresolved grief from a previous loss, it can complicate involvement in the ethical decision-making processes associated with the ending of the life of another person who is close to them. 

Frequently all that is required to enable all parties to move beyond the impasse resulting from unresolved grief is the appropriate telling of the story of the previous loss. This can be particularly effective if it is done in a way which elicits detail, and which draws out the relationships involved. It may be necessary to provide a way in which the story of the past loss can be honoured in its own right without submerging it in the impending loss. Anger can be a stumbling block to experiencing emotions around loss and the appropriate expression of that anger to a safe person, such as a counselor, may also be a deeply liberating experience. 

The process of ethical decision making is made even more complex by the fact that the routine elements of the human narrative or life-story are not easily accessible to reflection. Values are deeply embedded and built up over a process of a lifetime, and through positive and negative experiences. They may be not only inaccessible to reflection but also rarely acknowledged as the implicit and powerful shaper of who we are and where we are at in any particular moment. This is equally true for the caregiver and for the cared-for. Discovering these links can be elusive, and the assistance needed is often beyond the skills and training of either ethicist or medical specialist. A skilled counsellor may be needed to accompany the person concerned as they deal with the new situation of loss and the complexities of the decisions required.

The experience of grief is a normal part of human life and can never be ignored as we deal with ethical decisions at the end of life. While some people attempt to work through grief alone, and while there are undoubtedly times when solitude can assist the process, ultimately the gift of community is required for healing and is, in fact, a sign of healing being achieved. For those facing new loss, and already in a process of anticipatory grief or blocked in their response by unresolved grief, the first experience of a healing community may well be found in the medical, ethical and therapeutic professionals who recognize their needs and respond to them. 

The Stages of Grief 

In her germinal work, Elisabeth Kubler-Ross identified five ‘stages of grief’ which are key phases in a normal grief cycle - denial, anger, bargaining, depression, and acceptance. These phases are not simply a ‘step one to step five process’. The reality of grief is more complex, reflecting the fact that every individual grieves differently. Nevertheless, the strength of Kubler-Ross’s analysis lies in the identification of distinct patterns in the process of grief, with each phase having its own wisdom and insight. While the phases can be seen as part of the normal reaction to separating from someone or something that has been lost, they are also ultimately stages in the movement towards wellness and healing. These stages can be experienced not only by those who have been bereaved, but also by those who have learned that they are terminally ill and must come to terms with the impending loss of their life. 

Denial
This is usually the initial response to loss - a sense or feeling of isolation, shock, and numbness, coupled with disbelief about what has happened. Such feelings occur because we have, to a greater or lesser degree, gone from a position of independence and freedom to one of isolation and dependence. Denial can also be a natural protection against being totally overwhelmed by the full impact of loss. It allows us to first block out potentially devastating information and then to slowly let it filter through in a manner we can handle. 

Anger
In any grief cycle there will be a period of anger, which may be directed at the system, the person who has died, other people, God, or the situation causing the grief. This anger is the result of an individual’s life pattern changing - what was certain, sure, steadfast, is now uncertain, vague, and changed forever. A terminally ill person may vent such feelings of anger at the caregiver, or at another person who is perceived to be strong enough to handle it. When we are the targets of this anger it is important not to take it personally, as the expression of anger during grief is beneficial and it should not be repressed. However the person targeted may need support if they are to act in appropriate ways which promote both their own well-being and that of the grieving person. Anger is often intermingled with guilt about what was done and not done. Feelings of guilt, as with feelings of anger, require gentle and honest addressing in order to leave them behind and journey forward. 

Bargaining
Often in grief experienced by terminally ill people there is a period of bargaining as the person attempts to change the inevitable. The bargaining can be with God: ‘If you ensure that I live I will do x, y and z for you/I will devote my life to your service/build a shrine etc’. When the loss is incurred as the result of a marriage break-up, the bargaining can be with the partner: ‘If I stop drinking will you take me back?’ ‘I promise not to hit you again if you allow me to stay’. While bargaining is a natural stage in the process of coming to terms with what is happening, we need to recognise that it can be a shield or mask preventing us from facing our reality. 

Depression
Isolation and hopelessness can overwhelm the person as the reality of loss or impending death sinks in deeply. Each person’s experience of depression will be different, but sadness, loss of appetite, withdrawal, insomnia and inability to enjoy anything are common signs. The depression phase of the grief cycle is essentially a transition to acceptance of loss, a period in which the person gives up all the defences previously employed to keep the loss at a distance. Sometimes the person suffering from depression is told by well-meaning others to ‘snap out of it!’ or ‘pull yourself together!’ The path out of depression is not that easily trod as it involves the individual letting go and adjusting to the new situation. If the person does not appear to be moving through depression, medical help may be needed. It is also a stage that a person may return to more than once over a period of time, each time gaining a greater level of acceptance of the loss involved. 

Acceptance
In this final stage of grief there is a sense of peace as the person accepts the situation, and the reality that it cannot be changed. Acceptance is not the same as resignation, which occurs when a person appears to accept the situation while in reality they deny its truth. It is also possible that someone may simply give up on working through the various feelings associated with grief. This working through takes time, as the normal grief cycle for a bereaved person who has lost someone close can take up to two years or longer. Acceptance is characterized by inner peace and new insights, together with a willingness on the part of a terminally ill person to prepare for death, or in the case of a bereaved person, to move back into life. 

Conclusion
The terminally ill and the bereaved will move among these phases over a period of time, sometimes returning to a previous stage to complete unfinished business. If this process is able to take its own pace and proceeds in a healthy and holistic way it will be beneficial for both the person concerned and those who love them. 
___________________

Rev Michael McCabe, PhD
Director
The Nathaniel Centre

©
2002

Over the last few decades there has been increasing emphasis on self-determination (also labelled individual autonomy) in regard to a person’s right to choose their medical treatment. 

However, some difficult problems arise in cases where rational, legally competent individuals want to make provision for what is to happen in case they should ever become incapable at a later date through unconsciousness, coma, or mental incapacity. The question is whether such a provision made now is binding at a later date on health professionals, caregivers or members of the family. Such a declaration of wishes for the future is known as an “advance directive” and may be either in the form of a “Living Will” or in the form of an enduring power of attorney for personal care.

Information on living wills in New Zealand is not easy to track down, whereas there is a mass of information as to the law and practice in the USA. It is proposed to give a short background on the American situation, which has caused the Catholic Church in the USA to clarify its position, and then to describe the law and practice in New Zealand.

The American background
A brief outline of the history of the developing use of living wills in the USA is provided by Friday (1996 p.245) who points out that they were “first formulated in 1967 by the Euthanasia Educational Society” and “perceived by many as a means of preparing society for eventual direct active euthanasia”. As such, the living will was seen as unacceptable by many Catholics and other Christians, and it was argued that such a will was unnecessary because people already had the right to refuse useless treatment. On the other hand a number of Catholic theologians who have written about the “consistent ethic of life” have pointed out that medicine’s use of technology has resulted in a situation where people are afraid not of death, but of the long-drawn-out process of dying. We are now able to maintain patients in a persistent vegetative state for years by using nasogastric tubes or gastrostomy tubes, but does that mean we ought to do so? It is because many people fear that this might happen to them that they want to give clear instructions that no extraordinary means should be used on them, and may specify ventilators/respirators or tube hydration/nutrition or other life support systems as being technology they do not want to be subjected to. 

In Catholic circles in the USA there has been clarification of the position that, given the Church’s traditional teaching about the right to refuse “extraordinary means” to prolong life, it is acceptable to use a living will. Indeed many religious communities in the USA are apparently encouraging their members to use them. (Friday, 1996, p.245) 

The following format for a living will was suggested by the US Catholic Hospital Association in 1974: 

“I request that, if possible, I be consulted concerning the medical procedures which might be used to prolong my life as death approaches. If I can no longer take part in decisions concerning my own future and there is no reasonable expectation of my recovery from physical or mental disability, I request that no extraordinary means be used to prolong my life.” 

The New Zealand position
The situation in New Zealand differs in one particularly important way from the American one: Accident Compensation legislation, as administered by the Accident Compensation Corporation (ACC), has virtually eliminated medical malpractice litigation. Litigation has been one of the drivers behind the increasing emphasis in the USA on patient self-determination and the legal recognition of advance directives as a mechanism by which health providers can avoid liability by carrying out the wishes of the patient. Canada and the United Kingdom have also developed this branch of the law through litigation. In New Zealand, development through judicial decisions was not available. The importance of self-determination and informed consent to treatment has been developed through the Cartwright Report recommendation which led to the setting up of the office of Health and Disability Commissioner, whose first task was to draft a Code of Patients Rights. 

That Code is incorporated in law as a Regulation, which makes it subordinate to statute, but legally enforceable. However, the Code is framed in the form of patient’s rights, and patients do not have to exercise those rights, or rather they have the freedom to exercise those rights in accordance with their own conscience. 

The Code of Health and Disability Services Consumers’ Rights   (the Code) makes the following provision: 
           
Right 7: Right to make an informed choice and give informed consent: 
           
(5) Every consumer may use an advance directive in accordance with the common law. 

Under point 4   Definitions the Code provides:

           …Unless the context otherwise requires, - “Advance directive” means a written or oral directive -

(a) By which a consumer makes a choice about a possible future health care procedure; and

(b) That is intended to be effective only when he or she is not competent.

“Choice” means a decision -
(a) To receive services;
(b) To refuse services;
(c) To withdraw consent to services 

The other relevant piece of legislation is the New Zealand Bill of Rights Act 1990 which states:
s11       Right to refuse to undergo medical treatment

Everyone has the right to refuse to undergo any medical treatment. 

Against this legal background, two types of Advance Directives need to be considered: the Enduring Power of Attorney in relation to personal care and welfare and the “Living Will.” 

1.       The Enduring Power of Attorney (EPOA)
A power of attorney is a legal way of giving another person the power to make a decision on ones behalf. More specifically, an enduring power of attorney does not come into force until the person giving the power becomes mentally incompetent, and then it continues in force (ie. “endures”). Under the Protection of Personal and Property Rights Act 1988 (PPPRA) a person can be appointed to take health care decisions on behalf of the person giving the power of attorney, for the time when that person is no longer competent.

There is still a degree of misunderstanding about the enduring power of attorney in that some relatives attempt to obtain it after the person has become incapacitated. It is absolutely essential that the EPOA must be given before a person becomes incapacitated, and is at least capable of understanding the nature and effect of the power: Re “Tony” (1990) 5 NZFLR 609; Re K (1988) 2WLR 781. Because of problems that had arisen, the Law Commission issued a report in 2001, Misuse of Enduring Powers of Attorney (No 71) in which it recommended that there should be a certificate from a registered medical practitioner regarding mental capacity, and that the donor should have received independent legal advice.

From the point of view of the person wishing to make it clear what treatment is wanted or not wanted in the future, the drawback of the EPOA is that under s18(c) of the PPPRA there are limits to what an attorney can do, even if the patient gave clear instructions while still competent. However, what is “standard” treatment is not clear, and evolves over time and may not be the same as “ordinary means” as understood in the Catholic tradition (McCabe, 2001). The EPOA does not give authority to unplug life support systems even if the patient had given clear instructions while still competent that he/she did not want to be on life support machinery. 

2.   The “Living Will”
Because of concern expressed by clients as to the above limitations to the powers of an attorney under the EPOA, the Public Trust has developed a form of “living will” adapted from an American document; it is personalised to meet an individual’s requirements, including listing the circumstances which would bring the will into operation. The document is prepared in triplicate (one for the General Practitioner, one for the family and possibly one for the donor’s lawyer) and signed by two witnesses who declare that they know of no pressure being brought on the person to make the directive and that they are not aware that they stand to gain by the person’s death. It should be made clear, however, that these formalities while well thought out and sensible, are not a legal requirement. Other lawyers can also draw up “living wills” but none of these documents have been tested in New Zealand courts. 

Validity of Advance Directives
Five issues arise if there is any question about the validity of an advance directive: 

1.         That competence must exist at the time the directive was made has already been mentioned above. It should, however, be noted that the Code under Right 7(2) states that: “Every consumer must be presumed competent to make an informed choice and give informed consent, unless there are reasonable grounds for believing that the consumer is not competent.” If the consumer was not competent to make the directive, then it is not valid.

2.       Whether the decision was made freely, that is, without undue influence from anyone, needs to be evidenced by the witnesses and/or the person who assisted in drawing up the directive.

3.       Perhaps more difficult is the question of whether the person was sufficiently informed to make the decision, which would include an understanding of the medical treatment that is being asked for or refused. If the standard treatment for certain conditions covered by the directive changes over time, there may well be doubt as to whether the patient took into consideration these new treatments; it is therefore important that advance directives be regularly reviewed and updated if necessary. It is important that family and close friends be kept informed of the wishes of the person, so they can assist any caregiver who has doubts about the understanding or intentions expressed in the directive.

4.       Whether the circumstances envisaged in the advance directive have arisen may present a problem. So, for example, if Joan’s “living will” names Alzheimer’s as a circumstance that will bring the will into effect, because of bad experience of what happened with her parent who had the condition, but Joan though now clearly incompetent seems to be happy and contented, a clear instruction that no antibiotics should be administered in case of pneumonia or other similar illness might be questioned as not being intended to relate to the circumstances that now exist. 

5.       The great difficulty may arise that the patient’s right to refuse treatment under s11 New Zealand Bill of Rights Act 1990 and Right 7 (7) of the Code may be seen to clash with the health professional’s duty to provide medical treatment that could cure, alleviate or prevent a deterioration in health, and also with the duty to provide “necessaries of life” under s151 of the Crimes Act. Take the instruction that no blood products should be administered under any circumstances. Many would see blood transfusion as “standard treatment”or “ordinary means”. However there are patients with religious beliefs, such as Jehovah’s Witnesses, for whom blood transfusion is unacceptable.The July 2002 Issue 4 of Blood Issues (the newsletter of the NZ Blood Service) states that “a properly executed living will should be honoured.”

However a number of United Kingdom cases since the US Quinlan case 355 A 2d 647, particularly Airedale NHS Trust v Bland (1993) AC 789 have made it clear that a competent adult has the right to refuse treatment, even if the health professionals consider it to be “in the patient’s best interests” and even if the result will be the patient’s death. In Re B (Adult: Refusal of Medical Treatment) (2002) 2 All ER 449 a patient who was not dying from a terminal condition but was permanently on a ventilator, which she wished to have switched off, had her right to make that choice recognised. Imposing the treatment in the face of the patient’s refusal would be a criminal assault and the patient in Re B was granted a small award of damages to emphasise the finding of unlawful trespass to her by the unwanted treatment.

Are advance directives binding on caregivers?
This question is slightly different from the question of validity. It takes the matter further by asking whether, if the advance directive met the above criteria for validity, the caregiver is bound by the directive. It would seem that failure to follow the directive by giving treatment that was clearly refused would be a breach of the code. However, s3 “Provider compliance” says that the provider who has taken reasonable actions in the circumstances to give effect to the rights is not in breach of the Code. A provider might well (and “reasonably”) throw doubt on the applicability of the advance directive by questioning the medical information on which the patient based the directive. This factor makes it important for the “living will” to state quite unambiguously the reason for the choice made, so that it may be clear that new medical information would not have affected the decision. In the absence of judicial decisions on the effectiveness of living wills, it would be premature to state that a living will is binding. Nor are the UK cases mentioned above definitive, since they were concerned with patients who were competent, not with advance directives of patients who were incompetent at the time of treatment. 

Whatever the legal position, there are still ethical dilemmas left for the health professionals involved or other carers and for the person considering making an advance directive. No doubt as medical technology develops, the Church teaching will take into account new circumstances. For the present, the statement in Evangelium Vitae No. 65 is relevant: 

Euthanasia must be distinguished from the decision to forgo so-called  ‘aggressive medical treatment’, in other words, medical procedures which no longer correspond to the real situation of the patient, either because they are by now disproportionate to any expected results or because they impose an excessive burden on the patient and the patient’s family… 

It is also important to realise that a patient is entitled to choose to use extraordinary means even if they are experimental and risky and may “interrupt” those means where the results fall short of expectations”. (Grimm, 2001 p.3) Grimm quotes the Ethical Directives and Religious Directives for Catholic Health Care, (National Conference of Catholic Bishops,1995) which state:

While every person is obliged to use ordinary means to preserve his or her health, no person should be obliged to submit to a health care procedure that the person has judged, with a free and informed conscience, not to provide a reasonable hope of benefit without imposing excessive risks and burdens on the patient or excessive expense to family or the community (no.32). 

Finally, it is clear that it is both legal (see Re B) and ethical to provide effective pain relief as part of palliative care, even if the unwanted side effect of the medication is to hasten death. (See Manning op cit in acknowledegments especially fn 42.) 

Acknowledgements:
For helpful discussions, generosity with materials and assistance with library sources, sincere thanks to Eugenie Laracy; Sylvia Bell from the Human Rights Commission; Janet Strong from the Public Trust; Ron Paterson, Health & Disability Commissioner; Joanna Manning, for allowing me to see the page proofs of her article “Autonomy and sthe Competent Patient’s Right to refuse Life-prolonging Medical Treatment-Again” for the Journal of Law and Medicine, November 2002; Margaret Grigg, Librarian, Eugene O’Sullivan Theological Library at Newman Hall. 

References:
Friday, R. (19--). In New Catholic Encyclopedia (Vol. 19, p.245).

Grimm, J. (2001). Living Wills and Health Care Proxies. Ethics & Medics, 26(3), 3.

McCabe, M. (2001). Ordinary Means – Extraordinary Means: A Valid Distinction? The Nathaniel Report, (4), 5-6.

A list of further reading on this subject is available by contacting The Nathaniel Centre.

Nadja Tollemache OBE is a member of the Panel of Advisors of The Nathaniel Centre.

©
2002