End of Life Decisions (Dr Jon Larsen)

END OF LIFE DECISIONS
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“There are no ordinary people. You have never talked to a mere mortal.”
C. S . Lewis.
The care of people nearing the end of their lives must be approached with gentleness and compassion – often with tears. That is because it so frequently involves deep emotions aroused by the physical, emotional or existential pain faced by patients and their relatives at such a time.

1. SUFFERING IS A MYSTERY THAT DEMANDS A PRESENCE
A good place to begin is with an anonymous quote: “Suffering is not a question that demands an answer; it is not a problem that demands a solution; it is a mystery which demands a presence.” 1 Being properly present to people when we face such a mystery involves us in 5 areas of care:
1. Providing comfort.
That means helping those they love to come in close emotionally, and not to run away.
It means learning to talk the truth in love, and learning when to stay silent.
It means helping one another to face our mortality and find ways through our grief.
It means good food, safe and comfortable accommodation, kind and sensitive carers.
It may mean speaking up for a patient’s rights, interpreting her needs.
It means ensuring dignity.
It may mean gathering expertise to solve financial problems.
2. Treating pain properly. That is seldom very difficult, but some patients do need the help of doctors or nurses with special expertise in that area of care.
3. Treating other distressing symptoms such as nausea, incontinence and thirst effectively. There are a range of good solutions to these sources of distress.
4. Treating depression energetically. That usually means medication is required, but so is sensitive help in facing the existential issues in life.
5. It usually means finding appropriate spiritual ministry and nurture, helping patients and families to find hope beyond the grave. People from different religions will have different answers. As a Christian, Gilbert Meilander’s words ring true for me: “Jesus has been with us in the darkness of the womb, as he will be with us in the darkness of the tomb.” 2 He referred to Peter’s words: “In his [God’s] great mercy he has given us new birth into a living hope through the resurrection of Jesus Christ from the dead, and into an inheritance that can never perish – kept in heaven for you who through faith are shielded by God’s power…” 3
What we have described above is good Hospice care, and that needs a team of carers. But we must acknowledge that for many of our patients in South Africa, some of these things are not easily achieved. The provision of adequate comfort in a shack in an informal settlement for a patient dying of AIDS or cancer can be extremely difficult. That implies that we, as a society, must be prepared to invest heavily in developing Hospice services which are easily accessible to all our people. That is especially true in the face of our HIV/AIDS pandemic.
One thing is certain – it is never true to say, “There is nothing that can be done for you.” There is always something that can be done.

2. GOOD MEDICINE KNOWS IT LIMITS
One source of anxiety for patients and relatives may be the fear that patients will be locked into invasive treatments they do not want. Every patient has the right to refuse treatment which is burdensome or which has a poor chance of helping her . When she makes such a choice, that is not suicide or euthanasia. She is simply using her right to choose.
Also, when a doctor and the patient’s relatives decide to stop trying to cure an illness and instead give palliative (comfort) care because treatment has become useless and burdensome, that is also a good ethical decision. Good medicine knows its limits, knows when to say “Enough is enough,” when to make a treatment decision as opposed to a value judgement on a life. A well-drafted end of life directive or “living will” may help carers make a right decision in such circumstances when the patient is too ill to participate in the decision.
The real aim of medical treatment should not be to prolong life as long as possible by every technological means. Sometimes we have to say no to medical progress. Sometimes we need the trust and courage from knowing God holds life for us beyond the grave, and so we can decline what medical technology makes possible. This physical body is not all there is. We need a deeper healing.
When it is necessary to make a decision like this to change direction in treatment and the patient cannot take part because of the nature of his illness, it should be thought through carefully by the caring team and the relatives. It should never be one which a doctor should have to make on his own. That decision should be made with the understanding that there is a huge difference between suicide or euthanasia and letting a terminal illness take its course. The agent in ending life in the former is the person himself or his doctor. The agent ending life in the latter is the disease process.
Similarly, when a doctor gives treatment to relieve pain and other symptoms, it is possible for that treatment to shorten life. That is also ethically
acceptable because the intention is not to kill but to relieve serious discomfort . It is called “double effect.” The doctor’s intention is to relieve pain, not to kill. In fact, pain relief often lengthens life by allowing the patient to start eating again and to take an interest in his surroundings.
Finally, it is possible to keep the heart beating of a patient by artificial means even if he has sustained such a severe insult to his brain that he is brain dead. “One cannot speak of life any more in such cases. Physiological brain death is irreversible and a person with a flat EEG (electroencephalogram) is no longer alive. The key factor is that if it is scientifically and medically established that ‘brain death’ is irreversible and that breathing and heart beat can only be maintained artificially, then lifting life support on the ‘living dead’ should not be considered euthanasia proper.” 14

3. GOOD CARE COMES OUT OF A REVERENCE FOR LIFE
“The value of human life cannot be measured: it is the measure itself.” Former Pennsylvania Governor Robert Casey.
A serious source of depression for many patients and their relatives is the feeling of helplessness, uselessness and loss of dignity that comes with terminal illness.
In our culture, we tend to give value to people according to their usefulness. This is called a utilitarian view of people. It has been used to justify all sorts of destructive attitudes toward others. Thus the first step the Nazi government took toward the holocaust was to declare the mentally retarded as useless and a drain on the economy of Germany. It was to exterminate large numbers of mentally retarded people that the gas chambers later used in Auschwitz and Buchenwald were first developed.
What Robert Casey was saying is that persons have value apart from their usefulness. Theologians say that it is because we have the image of God on us. When my dear old mother of 88 had a stroke and lost her speech and ability to walk, she was still my mother. Her eyes still lit up when I came to visit. She could still love, though she could not talk or walk. My sense of compassion for her in her distress grew me, made me a better person, taught me more about love.
Our reverence for humanity must extend far beyond usefulness. It is the quality which allows mothers and fathers to behave sacrificially toward their young, soldiers to risk themselves for a critically injured colleague, spouses to pour themselves out in caring for each other into old age, health care workers to roll out of bed for an emergency. It is the essential basis of all quality of life. Relationships are the one thing that remain when we are incapacitated.
Our reverence for human life must extend to being prepared to accept that hardship and pain are not necessarily always bad. Our growth towards emotional and spiritual maturity often needs them. “Suffering challenges our tendency to be control freaks. It challenges the widespread fantasy that we can be autonomous, choosing individuals. It emphasises our creaturely dependence.” 4 We have to learn for ourselves, and to teach each other, that dependence on one another is part of the human story – that the answer to the loss of dignity is compassion mingled with respect.

4. WHEN IT IS ALL TOO MUCH
Sometimes people with terminal illnesses become really desperate about their condition, and ask for help to “end it all.” And a real sense of desperation can come from staying alongside a loved one who is suffering physical pain, severe depression or the loss of dignity as a result of incontinence or dementia.
Relatives may then also ask about euthanasia, feeling that that may be the most compassionate thing that can be done for the patient. When they use that term, they may mean one of 2 things:
They may mean doctor-assisted suicide. This means a doctor provides a person with the means of killing himself or herself at his or her own request.
Or they may mean true euthanasia, in which the doctor kills the patient, usually by administering a lethal dose of a drug. That may be at the request of the patient, so-called voluntary euthanasia; or a doctor may kill a patient at the request of the relatives of the patient or on his own initiative without the patient’s consent – involuntary euthanasia.
Most people know that euthanasia is not legal in South Africa. What they may not recognise is that it is a procedure which is outlawed by a vast majority of nations for very good reasons.

5. WHY WOULD A PERSON ASK HIS DOCTOR TO END HIS LIFE?
This is a question we must face with empathy and gentleness, because we speak of people who suffer, sometimes terribly.
Most people assume that unbearable pain, perhaps from cancer or AIDS, is the usual reason. That is not true. 95% of all pain can be satisfactorily controlled by a doctor who will take the trouble to listen to the patient and follow common procedures of pain control. When pain is controlled, most such patients change their minds. If physical pain is indeed the reason for such a request, the help of a doctor who is skilled in pain control should be sought.
Depression and other mental illnesses are in fact the commonest reasons a patient wants to end his life. Depression can be a difficult diagnosis to make. It can masquerade as other things. It should be considered if any person begins to talk about suicide. Research suggests that “Suicidal thoughts appear linked exclusively to mental disorder.” 5 These are also treatable conditions, and again, the vast majority of patients who receive proper treatment and counselling, change their minds about taking their own lives. It is therefore not surprising that major studies in the United States, United Kingdom, Sweden and Australia found that only 2-4% of victims of suicide were terminally ill when they died. 6
The third reason people may give for wanting to end their lives is the fear of losing control and becoming dependent – of perhaps becoming incontinent or developing a dementia. These are real fears, especially for people with no strong supportive family group. But when such people are introduced to skilled hospice care where their fears are listened to and solutions are found – when they are cared for by people who offer them compassion mingled with respect – they too change their minds.
Fearful and dependent people can learn that the frailty of terminal illness or of old age can be the place where they at last face up to the deep existential questions of life – questions about the meaning of life and the possibility of eternal life. They have the time to find that there are satisfactory answers to those questions which will let them die in peace. This should also be the time when we put all our relationships right – when we face up to all the unfinished business of our lives. It should be a time of spiritual and psychological maturing. It is a tragedy when people are deprived of this important life work. It leaves behind scars in others who should have been able to use those times for healing family wounds.
One thing that becomes clear as we consider this information is that the patient who asks for euthanasia really needs more skilled care.
In the depths of depression he may want it, but a week or so later when he feels better, he will be glad no one had the right to take his life when he asked them to do so.

Nearly always, when a patients’ relatives are able to see that improved care changes the situation, they will withdraw a request for euthanasia.
They often also need help to see when they themselves have been drawn into the problems experienced by the one they love. Caring for them can cause exhaustion and burnout. That combination often causes profound depression. A depressed state of mind is not one in which to make any life and death decisions. The correct response to that situation is for the carers to be given a vacation!!
Sometimes, if there are financial difficulties, they may need help in recognising the influence of divided interests in their own emotional responses.
And how does a person who has helped to decide to kill someone close to them ever complete their grieving, especially when they come to see the criteria used to make that decision through different eyes when their circumstances are changed?
Thus relatives who begin to ask for euthanasia for a loved one usually need help in finding more skilled care. They need help in assessing their own care needs in the situation they face.

6. WHY IS THERE PRESSURE FROM SOME PEOPLE TO MAKE EUTHANASIA LEGAL IN SOUTH AFRICA?
Legislation permitting euthanasia is a huge departure from the norms of Western medicine for the past 2400 years. It was the followers of Hippocrates who first took an oath which included these words: “I will keep [the sick] from harm and injustice. I will neither give a deadly drug to anybody if asked for it, nor will I make a suggestion to this effect.” Christian and Muslim doctors followed their lead.
So it is not surprising that Linda Emanuel wrote, when American law makers considered allowing euthanasia in their country: “This is a defining moment in medicine. If doctors are allowed to kill patients, the doctor-patient relationship will never be the same again. If killing you is an option, how can you trust me to do all I can to heal you?” 7
What has led some people to attempt to abandon over 2400 years of wisdom?
One reason seems to be our modern culture’s preoccupation with personal autonomy (which means the right of self-government or freedom of the will). It is an idea which is then extended to include control over the timing and manner of death as the ultimate autonomy. But that is a deeply flawed idea.
Firstly it is a belief like that cannot foster a sense of community and the common good, with their values of self-sacrifice and of doing things simply because they are right and just. It would be disastrous for our civilisation if many people began to live according to such an ethic. Every meaning given to community would be reduced if persons can exist as an end in themselves. That is true on a secular level as well as a religious level. Quality in life comes from the fact that we are in community, bound together by duties of care, responsibility and compassion. “Respect for life and the prohibition of suicide is part of the glue which binds society together.” 8
Secondly, “no man is an island.” The person desiring to take his life will be drawing others into that decision whether he intends to do that or not. Doctors will be faced with a crisis of conscience, not only when they are asked to assist a suicide, but in looking after every critically ill patient. What doctor has not wished in our worse moments at 2:00 a.m. that a critically ill patient requiring hard and difficult treatments or surgery would not die so that one can go back to bed? When we start to push back the boundaries of the sanctity of human life in that way, will it not become easier to give up? Ambivalence in motivation in medical practice is a very serious thing. That fact is the reason we health care practitioners take an oath not to consider the patient’s race, religion or creed in our efforts to save him – why we still take an oath equivalent to the Hippocratic Oath.
Then consider the situation of the patient herself. When a man or woman senses they have become a burden to others, will not the availability of voluntary euthanasia soon become the duty to ask for it and die? Unending tragedy can result when there is still plenty of work to be done in their relationships if such persons are to die in peace, and are to leave those who love them in peace. When that process is interfered with, the possibility of severe depressive reactions in the survivors becomes very real, and other suicides may then be added to the tragic sequence of events in that family.
Another factor which has allowed people to begin to speak about euthanasia is that western medicine has gradually moved away from the truth that medicine is an art which combines skills and a moral commitment based on the standards Hippocrates taught. We too easily think of medical care as a series of techniques and as a means only of satisfying what the consumer wants. This crisis of meaning in medical circles has opened the door to considering euthanasia.

7. DOCTORS AND EUTHANASIA
The truth is that doctors should not be given the responsibility and power of euthanasia or doctor-assisted suicide.
Holland is a country which has permitted doctor-assisted suicide for some years, provided the doctors follow specific guidelines. These guidelines require that the patients be mentally competent, that they voluntarily repeat the request for death and that they are experiencing unbearable suffering from an irreversible illness. They also require that the doctors always report their intentional involvement in a patient’s death. It was hoped that such guidelines would protect dependent, disabled or elderly persons from family members and doctors who no longer think their lives are worth living. Two studies 5 years apart have proved that those were vain hopes. 31% in 1990 and 22,5% in 1995 of the patients were killed without their consent, and in 1995, 21% of them were mentally competent at the time. 9,10 Later researchers found that cases of involuntary euthanasia were rarely reported to the authorities. 11,12 In other words, doctors are murdering patients, the numbers of murders are not really known and there is no recourse to the law in that situation. Predictably, many Dutch patients now carry cards instructing that they should not be killed and some even hire people to guard them while they are in hospital. The trust between doctor and patient has substantially broken down, and legal safeguards have proved useless. This suggests that opening the door to euthanasia sets a nation on a slippery slope with very many uncertain and undesirable consequences.
Then consider the fact that doctors are not nearly as good at predicting the outcome of an illness as they wish they were and as the lay public believes. Errors of diagnosis and prognosis (expected outcome) are common, even in end of life situations. It is an extreme irony that the Netherlands does not permit the death sentence for convicted serial killers for fear of the court’s making a wrong judgement, but they do permit it for innocent citizens who happen to be terminally ill. They do that even though there is certainly a greater chance of a doctor making a wrong decision than there is of one of their courts doing so in a crime which might have carried the death penalty in the past. A comparison between the Netherlands and Great Britain (where euthanasia is not permitted) shows that the latter has rapidly outstripped the former in the provision of skilled terminal care, and in its development of the hospice movement.
There is also evidence that doctors in any nation are not good at assessing the patients’ feelings about the quality of their lives. Patients are generally more comfortable with the quality of their lives than the doctors think they are. 6
In the private medical sector in South Africa, doctors would be open to a conflict of interest if euthanasia became legal, especially when they are offered financial incentives in managed care programmes to keep the cost of patient care down. It is a great deal cheaper to put an end to a patient’s life if she has a terminal illness than to treat her.
In the public sector, the situation is no better. Our hospital services are overwhelmed by large numbers of very ill people as a result of the HIV/AIDs pandemic. These patients are often ill-informed and very poor. Staff providing after hours cover in particular suffer from high levels of compassion fatigue and burnout. It is almost certain that the introduction of euthanasia into such a situation would lead to very serious levels of abuse of any legal safeguards which might be attempted.

8. OUR BEST COURSE AS A NATION IS TO RELEASE EVERY POSSIBLE RESOURCE TO DEVELOP GOOD HOSPICE SERVICES FOR ALL OUR PEOPLE.

I wish to acknowledge the help I received from publications by Focus on the Family and CMF (UK), and from medical and nursing colleagues in Pietermaritzburg and Howick, as I prepared this document.

RECOMMENDED FURTHER READING:
1. What on earth are you thinking for heaven’s sake? by Michael Cassidy. Christian Art Publishers
2. Matters of life and Death by John Wyatt. IVP

Dr J V Larsen MB, ChB, FRCOG, November 2006

References:
1. Anonymous. Quoted by John Wyatt in “Matters of life and death” IVP, 2000, Page 73
2. Meilander G (1997) Bioethics: a Primer for Christians. Carlisle: Paternoster Press.
3. 1 Peter 1:3-5. New International Version of the Holy Bible. International Bible Society.
4. Wyatt J (2000) Matters of Life and Death, IVP, page 196.
5. Brown JH, Hentleff P, Barakat S, Rowe CJ: Is it normal for terminally ill patients to desire death? 1986 American Journal of Psychiatry, 143:2, 208-211
6. Clark DC: ”Rational” suicide and people with terminal conditions or disabilities. 1992: Issues in Law and Medicine, 8, 147-166.
7. Linda Emanuel, MD, PhD, Vice President for Ethics Standards, American Medical Association, New York Times Magazine, July 21, 1996.
8. Wyatt J (2000) Matters of Life and Death, IVP, page 193.
9. van der Maas PJ, van Delden JJM, Pijenborg L: Euthanasia and other medical decisions concerning the end of life: An investigation performed upon request of the Commission of Inquiry into the medical practice concerning euthanasia. 1992. Amsterdam: Elsevier Science Publishers. p 178-182.
10. van der Maas PJ, van der Wal G, Haverkate I, de Graaff CLM, Kester JGC, Onwuteaka-Philipsen BD, van der Heide A, Bosma JM, Willems DL: Euthanasia, physician-assisted suicide, and other medical practices involving the end of life in the Netherlands, 1990-1995. 1996; New England Journal of Medicine 335, 1699-1705.
11. van der Wal G, van der Maas PJ, Bosma JM, Onwuteaka-Philipsen BD, Willems DL, Haverkate I, Kostense PJ: Evaluation of the notification procedure for physician-assisted death in the Netherlands. 1996. New England Journal of Medicine, 335, 1706-1711.
12. Sheldon T. Only half Dutch doctors report euthanasia, study says. 2003, Brit Med J. 326, 1164.
13. Callahan D: Minimalist Ethics. 1981, The Hastings Centre, October, p 19-20
14. ter Haar G quoted by Cassidy M in What one earth are you thinking for heaven’s sake. 2006 Christian Art Publishers page 127