Palliative Care – Is it the Answer?
Stuparich, J. (ed), (1992) Euthanasia, Palliative and Hospice Care and the Terminally Ill. A seminar held at John XXIII College, Australian National University, Canberra, 26 September 1992. Sponsored by the Australian Federation of Right to Life Associations. ACT Right to Life Association, Canberra, Australia. pp1-16.
- How are these Principles Translated into Practice?
- How Successful is Palliative Care?
- Death with dignity
- Advance declarations
- Medical Consequences of Euthanasia
Today, we turn our attention to the reverse side of the subject of euthanasia. It is not enough just to oppose euthanasia; we have to be able to put forward better strategies of care, realistic of attainment and respectful of human life. It has been suggested that if doctors communicated well with patients and families, respected patient choice about treatment, knew when not to continue treatment which served no good purpose and was unwanted, and were familiar with the principles and practices of palliative care, there would be little need to discuss euthanasia at all. But would it be the complete answer? I ask you to keep that question in mind as we consider the various aspects of palliative care.
Medical prospects for the dying have gone through several distinct phases in this century. In the early decades, when medicine had few real cures, the role of the doctor largely involved the control of symptoms, while for more serious illness, his critical contribution was his supportive and continuing presence. Both doctor and patient understood this and accepted its limitations. As medicine became smarter, choices about treatment became available, but were still generally few and relatively clear.
More recently, we have seen a proliferation of treatments which are new, complex and powerful, many still undergoing evaluation, and still in some respects, experimental. Doctors can be baffled in knowing how best to use them in all circumstances. Surgery, chemotherapy and radiotherapy are the modern methods which must often be used in pursuit of the best chance of cure of cancer, but each of them may also exact its high price in added suffering in many instances. No price may be thought too high to pay by those who are cured, but what of those who are not? And throughout the illness, fear, anger, anxiety, frustration and disappointment are some of the possible extra loads for those who may be struggling with physical symptoms which are already very distressing.
Hope drives some patients, families and doctors to want to take almost any chance of success, at a time when nobody can truly predict the future course of the illness or know the real chance of success of a particular treatment in any individual. The lottery of life is still not essentially different from what it has always been, except that now there are a few more winners, though mainly of consolation prizes.
Though medicine has made great advances in prolonging life, it has not made as much headway with curing the underlying disease. This means that, when life has been prolonged, but is no longer of acceptable quality, patients and doctors alike may consider that the result has not justified the effort. This view is only apparent with hindsight, whereas earlier, everyone agreed that all steps should be taken to try to secure a chance of cure, however remote that may have seemed.
These unhappy outcomes can occur even when people of experience and good will did all in their power to pursue the patient’s best interests. This is a dilemma of medicine which is unresolved, but which is yielding to better understanding of when one should not treat, as well as when one should. We have too often proceeded on the basis that we can, so we do, not pausing to ask “Though we can, should we?” I would not want to seem to oversimplify this problem. As a patient, who among you would reject the slender chance of benefit, even against the odds? Later, when the outcome was not what you had hoped for, how many would not feel some regret or anger, perhaps directed at particular persons?
When cure is no longer a realistic goal, medicine’s best answer should be the same as it has always been, namely to care as well as possible. Better care can now be provided for life-threatening illnesses, using the special skills designated as “palliative care”, a form of care increasingly found in hospital and community practice. In this regard, Australia is relatively well provided for, but much remains to do. Palliative care has been defined as “the management of those with a limited life expectancy, and of their families, where the emphasis of care is on their quality of life”. This definition focuses attention at the end stage of illness, which may be quite lengthy, and on the prime importance of comfort of all kinds, but does not limit such care to terminal illness.
Another definition says “palliative care is all the things which should be done when there is nothing more to do”. That reflects the limitations and distortions to which modern medicine has too often subjected patients and families, when our best efforts are directed at attempts to cure, compared with our ineptness when cure is no longer attainable.
Since the potential of palliative care to meet the needs of dying persons is still too little understood, not only by the community but also by some health professionals and educators, it is vital to be clear precisely what it is. Without this understanding, the community in particular is unable to demand those standards to which they and their sick members are entitled.
The following principles are some of those which inform good care of the dying:
- Every person may decide what medical treatment he or she will accept at any time, and no treatment may normally be given to a person without their consent. The right to refuse treatment is upheld by the common law. It extends across the board, even to treatment which may be sustaining life, except when such refusal is for the purpose of suicide.
- No person is obliged to consent to any treatment which has little or no chance of curing the illness or of relieving distress, or which is thought to be excessively burdensome.
- A doctor has no obligation in conscience, morals or law to persist with treatment which is doing no more than prolonging dying.
- A doctor may not do anything to directly put a patient’s life in danger, except as part of treatment which is thought necessary, and to which the patient has consented.
- While the family may be asked to give consent for medical treatment when a patient is unable to do this for any reason, this consenting role is not generally protected by law. In the case of minors, parents may consent to necessary treatment, but they cannot request or agree to the withholding or withdrawal of treatment which is thought necessary to save life.
- Every person is entitled to an adequate standard of treatment, appropriate to his/her illness.
- Every doctor is entitled to the education and facilities which will enable him to provide treatment of an adequate standard for each patient.
- A doctor is entitled to the protection of law in carrying out his necessary duties.
How are these Principles Translated into Practice?
The knowledge that one’s life is under threat brings inevitable emotional components which are never far from the surface at best, and may be evident in patient and family at all times. The ordinary reasonable certainties of a satisfactory outcome to illness through medical cure are now absent. The following are the chief components of palliative care:
1. The effective relief of physical pain, particularly severe pain, and, if possible, its complete removal. It is commonly feared in the community that pain is an inevitable part of cancer, that it always increases in intensity and eventually becomes resistant to treatment. None of those is true. Pain is mild or absent in a third of cancer sufferers, it does not always progress and today, it only rarely becomes uncontrollable. Indeed, physical pain is usually easily controlled throughout the duration of the illness, when one knows how to do it, and knows also that pains are often multiple, and that different pains may have different causes, needing different remedies.
2. The provision of emotional support and the replacement of anxiety, which is usually present, with security. The fear of death, whether there is pain or not, produces anxiety of varying degrees in most of us. This alone can result in great anguish, and pain can be difficult to relieve effectively while there is emotional turmoil. Assisting a person and his family to cope with the threats and uncertainties of illness is one of the greatest contributions palliative care can make.
3. The provision of effective communication, so that the patient and his family can understand what is happening, what treatments are available and their likely effectiveness. Without that knowledge, proper decisions cannot be made, and the special necessary social and family tasks associated with the end of life cannot be engaged in. A doctor, experienced in palliative care, wrote: “Communication can make the difference between a composed, functioning person who is able to make the most of his life and an anxious, depressed one whose days are filled with despair”, and he thought this was “a formidable responsibility”.
4. Respect for the person’s right to self-determination, however much his or her decisions may not coincide with our view of what should be done, provided their wishes do not infringe the legitimate rights of others. It is one of the tasks of palliative care to spend enough time with patients to try to determine their meanings as well as their words, so as to provide them with their genuine needs.
5. The family is incorporated in care to the extent that they wish and are capable of fulfilling. If they wish to be involved in the patient’s care, they are supported and guided in that. If they cannot, they are supported in other ways.
As a rule, the family constitute the most essential source of comfort and support for these patients, complementary to but more necessary than anything the professionals can offer. Some families leave us with wonderfully warm memories, when parents or children, with few worldly resources, move mountains for their dying family member, calling on their natural human gifts. At other times, however, the family can be the source of threatening situations, counterproductive or even destructive. In their impotence and inability either to help or to cope, they may want to assume control of the situation, to show their concern or to soothe their conscience regarding past neglect, instructing the patient or the carers in their duties as they see best. There are few rules for families, one takes them as one finds them.
6. The person’s spiritual needs are met as fully as required. These vary from nil to being of maximal importance. Care is needed with this sensitive, personal and private matter, but it ought, at the least, to be explored with every person.
7. As far as possible, care is provided in the place where the person wishes to be. The fulfilment of this preference is subject to a large number of factors, only some of which can be influenced. The greater availability of home-care nurses trained in care of the dying now means that a wish to remain, and perhaps to die, at home can be met more often. But the heavy strains which this may put on the family must be understood. Families need to be protected from excessive or unrealistic demands, and they need to be carefully monitored to detect and prevent overload.
8. These tasks cannot all be done by any one professional person. The minimum team will generally be two, a capable nurse and a capable doctor. A range of other professionals may be used as needed, but always mindful that size soon becomes unwieldy and too many carers are difficult for the patient and family to deal with.
Better palliative care may be provided with better physical facilities, but the chief requirement is not an expensive unit filled with gadgets; it is the necessary knowledge, by both nurses and doctors, of the attitudes and skills which will lead to good care. Failure to realise that these skills are different in important ways from those needed in conventional medicine can and does contribute to poor care.
How Successful is Palliative Care?
When the objectives just listed can be realised, the patient will end his days in comfort, he and his family will be enabled to cope with dying, they will feel secure rather than anxious, they will be assured of competent care which will not be withdrawn, they will be encouraged and enabled to be open with each other, and the family will later be offered support, if needed, in their bereavement. The actual achievement will not always reach those heights, of course, and it will be dishonest and useless to pretend that dying will always be, or could be, made dignified and comfortable. When a person is socially isolated and alienated, it would be foolish to expect palliative care to work miracles, and so, sometimes, the outcome is meagre indeed.
The usual result lies somewhere between those two extremes. While the patient is the proper centre of attention, the family will sometimes be the main recipients of the benefit from palliative care, before and after death. When a person dies after being negligently cared for, the family is left feeling angry, and they must carry that unalterable memory for the rest of their lives. When they are satisfied that good care has been provided, they have a better chance of resolving their grief normally and of experiencing a healthy bereavement.
We can only assist patients and families to meet their challenges, enabling them to use whatever resources they have already acquired up to this time, and perhaps to build on them. There may have been a lifetime habit of avoiding threats of all kinds, a psychological device which is commoner than may be supposed. In that case, the opportunity to learn the necessary skills to cope with challenge has never been taken up. Another factor of growing importance is the greater loss of religious faith in the community, whereby life is now experienced only in terms of its earthly dimensions. If there is no perception of life after death, and if one has failed to find a sufficient meaning in human experience, the end of life can be a barren time. But that is not always the case, and there is little direct association between professed religious faith and an ability to face death with acceptance.
Dying is always sad, it is often difficult and is occasionally overwhelming. The control of physical pain is probably the easiest part, when sufficient skill has been acquired, when one knows one’s limitations and is then prepared to summon an expert, if necessary. Relieving severe pain is undoubtedly the single greatest boon which any person can offer another, and is often, of itself, enough to enable the patient to attend to other important aspects of his relationships of all kinds, which make the greatest contribution to personal contentment.
The patients who present the most difficult challenge are those with chronic, incurable illnesses which, while not presenting an immediate threat to life, will probably cause death at some future time. Such are those with quadriplegia, multiple sclerosis, some motor neurone diseases and so on. Some of them have an objectively low quality of life, and life for most of them will deteriorate as time passes. They evoke our pity and are the focus of much interest by those who favour euthanasia. Whatever we may think of their condition, they are generally content, and continue to value their life.
But, like others with disabling chronic illness, they become depressed from time to time and may ask for release from life. What are we to do? Apart from continuing to provide excellent care, there are no agreed human answers to their problem, as indeed there are no answers to many of life’s most difficult challenges. I shall return to this point again later.
Death with dignity
The expression “death with dignity” is often heard, meaning different things to different people. For some, dignity implies comfort and perhaps cleanliness; for others it may be a euphemism for euthanasia. For others again, the dignity of human life is related to its value as an individual gift, continuously endowed from conception to the grave. For that reason, all the sick evoke our compassion and draw forth our caring response. The dying are still part of the living community, and they merit the dignity due to every living person. We truly respect and support their dignity when we show them that we value them, inherently and for their gifts, relieve their suffering, seek and respect their wishes, and let them know that we do these things in recognition of our human interdependence. In such actions, we also express and validate our own dignity while we can, knowing that our turn to receive may come soon enough.
We often bracket pain and suffering together, and while they may occur together, they are separate concepts. While it may be thought imperative for doctors to have an understanding of suffering, and the community might imagine that it occupied a central place in medical education, in fact, one may hardly ever hear it mentioned during the medical course. This is most regrettable. This failure results in a faulty dynamic in the doctor/patient encounter, when a patient expects something which he does not know cannot be provided. Disappointment or resentment ensues. There are remedies in the drug cupboard for pain, but there is nothing there for suffering. Dying patients and their families always experience suffering, of different degrees and at different times.
People suffer when they feel that their integrity or their life is threatened. If they have physical or emotional distress, they suffer when they do not understand its cause or its meaning, when others who should understand do not, when it is being ignored by others, especially those who should be interested, when the distress is very severe, when it is not remitting or being relieved, or, perhaps worst, when it is believed no relief is possible. Suffering is experienced in the mind, and is unlikely to be relieved if it is not understood. To understand the cause, a doctor has to explore the significance of something which he knows he might find threatening, or be unable to deal with. If, for those reasons or because he has been given little professional guidance or encouragement, he avoids the task, the patient is likely then to suffer more, especially if he expected the doctor to help him. It should be a great ethical challenge for doctors to be depicted as the enhancers of suffering rather than its relievers.
Suffering cannot be predicted, so that those who care for the dying must look for it and learn to recognise it, because patients never complain of it. For example, our treatment of severe pain is largely grounded in the view that pain is a physical function; if we do not also include a search for its emotional accompaniments, we may not only fail to relieve the pain, we may have depersonalised the patient and in so doing, we cause further suffering.
Suffering may be manifest as anger, depression, sadness, loneliness, grief, unhappiness, melancholy, rage, withdrawal, yearning. Its other name is anguish. There needs to be an inner redirection of forces, away from the area of loss to others which fortify. If suffering is to be relieved, one needs an ear to listen, a mind to understand and a heart to stand firm. There are no medicines for suffering, there are only other people who will support and try to understand.
When a patient is mentally incompetent, there can be problems with decision-making. It is customary then for a family member or close friend to be recruited to assist, on account of their better acquaintance with the person’s probable wishes. In practice, when good communication has been maintained between the parties, it is rare to meet a major problem, and the difficulties which are commonly discussed are in fact either theoretical or the result of poor practice. This use of a medical agent lacks legal endorsement at present, so some think it should be legalised. There may be a case for this, but any new law could only endorse what any well-informed doctor already would do, and would benefit only the ignorant. There are better ways to instruct people than by making new laws.
A living will states that the person, in the event of becoming incompetent and having a life-threatening illness, would want only comfort measures, and would not want any unnecessary prolonging of life. In other words, he/she would want good palliative care. The fact that such documents are thought necessary should be seen, by doctors in particular, as an indictment of the prevailing standards of terminal care. They are little used in Australia, and their legal status, when they pit the written word against a doctor’s view of his obligation to provide good care in the circumstances, is untested. The phrase “in the circumstances” is important, because a living will must usually be made in ignorance of the actual medical context in which it will possibly need to be considered.
In the US, where living wills are legally recognised in about half of the States, they have been hijacked by the euthanasia lobby by the insertion of seemingly innocent terminology, which is not carefully defined and may be interpreted in unintended ways. Thus, the possible uses to which they may be put is concealed. It is thought that every living will statute in the US at present could allow for non-voluntary euthanasia. In the view of one English commentator, the living will “hovers between the unhelpful and the illegal”.
By contrast, a legally witnessed medical power of attorney appoints a nominated person to make medical decisions in the event of a patient’s future incompetence. This is a more valuable concept, since the actual details of the medical events as they evolve can be taken into account. Whether the concept translates into safe practice depends on the wording of the draft Bill. In Victoria such a law has already been enacted, and in South Australia a law is currently being considered. Both have the defect that there is insufficient check on the powers of the agent. In both, the possibility exists that an agent, through ill-will or ignorance, could cause medically necessary treatment to be withheld, and the other parties would be powerless to stop it, since the law gives the agent the overriding right to refuse treatment, without the need to justify or explain.
Medical Consequences of Euthanasia
It is surprising that the possible effects of legalised euthanasia on medical practice are little discussed. Because they would be significant, they need to be considered.
Legalising euthanasia in any of its forms would fundamentally alter our concepts of what constitutes medical practice at the end of life. Despite repeated attempts to maintain the opposite, there is a qualitative difference between forgoing futile treatment and killing or assisting suicide. Life-sustaining treatment may be withdrawn from a person who has an underlying illness that is incompatible with spontaneous life, when the treatment has been shown to be useless or too burdensome. The natural course of the illness, which had been temporarily stayed, is thus allowed to run. If the diagnosis is correct, death will then result from the illness which was going to be the eventual unavoidable cause, and this cause is recorded on the death certificate. If, for some reason, death does not occur, this is not regarded as a failure, all other appropriate treatment is continued and there would be no cause for legal liability against the doctor.
Euthanasia is different in its nature and its intention. Death is now the sole intended and the sole possible outcome, and is not due to any natural cause, even in those with terminal illness. It is chemically induced so that a new and otherwise impossible cause of death has been substituted for the one which was to be expected. Making a person die is different from letting a person die, ethically and legally. If the death certificate is honestly completed, it will tell the story. Even the nature of the person’s request is different; one risks death, and the other seeks it. No matter how often forgoing treatment and killing are asserted to be equivalent in the terminally ill by those who cannot see the difference or who wish to obscure it, prescribing for death is singular.
Using a narcotic as a pain-killer or a patient-killer cannot be compared. If the former is therapeutic, what is the latter? Even if the law is changed, drug actions would not change. Under what heading in the textbooks of medicine might the new uses now appear? If, as seems likely, some doctors were prepared to cooperate, it would have to be decided how and where it was to be done; would it be at home, in hospital or in segregated suicide or euthanasia clinics? Would these doctors be specialists? Would they be listed in a directory? Would they be required to undergo special training? Would they be accredited and be subject to peer review? What kind of medical indemnity would they need? How would standards of practice be established and regulated?
Merely to ask such questions is obviously outlandish, because killing people has nothing whatever in common with what it means to be a doctor. Doctors dispense treatment, not poison. No medical skill would be required to kill. If respect for the person’s autonomy is thought paramount, why could not any person carry out legalised killing? Nobody needs a doctor to tell him he wants to die. It could be seen as restrictive to confine killing to doctors, whose powers over patients would be enhanced at a time when some think they already have too many.
Those who advocate euthanasia seldom display any awareness of another important medical factor. Studies have shown that suicidal intent in sick persons is highly dependent on the presence of mental disorder, and that those with terminal illness have a higher than average incidence of such, though it be in subtle form. Almost 60% of cancer patients, for example, develop clinical depression at some time, and in one series, every terminally ill patient who suicided or wished to suicide was depressed. It is uncommon, even for doctors who are in favour of euthanasia, to mention this. How many sick elderly, so-called competent, persons may be allowed to be needlessly killed by current proposals?
It has been pointed out many times that legalised euthanasia would be a positive disincentive to striving for the new treatments and for high quality of care for all, especially for the most difficult and unpleasant illnesses and patients. There can be no doubt that it would sometimes be easier and cheaper to kill than to care. Although such possibilities have been labelled as scare tactics, they would not only be likely, they would probably be inevitable. In Holland, euthanasia is now openly discussed as a variant of medical care, with its own indications and standards. The risk would always exist that an option would become an expectation, and for some even an obligation.
The greatest risks for medical practice, however, would be the possibility of coercion and deception. These elements are already sometimes to be found in medical decision-making, and they could be more easily hidden in respect of euthanasia. Would euthanasia be expected to enhance or poison the relations between patients and doctors?
If legalised euthanasia in competent patients were thought to be a genuine benefit for those who request it, for how long, and by what logic, could this benefit be consistently withheld from incompetent persons whose plight was thought to be as bad or worse? Since involuntary euthanasia is unquestionably murder, is it preposterous to suggest that murder may be a likely extension of legalised voluntary euthanasia? It has already happened in Holland. The practice of medical murder would not only be an ethical challenge, it would move across our culture and change its shape.
The only proper functions of a doctor are: to prevent illness where possible, to diagnose, to treat so as to cure when possible and to care when it is not, to teach, and to carry out related research. Any other things a doctor does, he does in his private capacity. It has never been any part of a doctor’s role to kill those he cannot cure. There are no sound reasons why doctors should have anything to do with euthanasia, but many why they should not. I think doctors should state publicly that they will not deliberately kill. They should say that they will not tolerate the killing of patients and will take disciplinary action against doctors who kill. They should say to the community that if it insists on legalising euthanasia, it will have to find others to do the killing.
The tragic case histories which are quoted to support the need for euthanasia are generally examples of medical or social neglect. If somebody had known what to do to relieve distress, and had done it, there would seldom have been a problem. By putting forward the worst cases, it is made to appear that there is a vast pool of suffering for which nothing less than death will suffice. But those who practice palliative care encounter few requests for euthanasia from patients. Those who ask more often are distressed relatives who are suffering, sometimes as much as or more than the patient, and who feel impotent and unsupported. It is as though they were saying “put him out of my misery”.
The two groups for whom euthanasia is most commonly proposed are the terminally ill, and the chronically ill who are not dying but who have an incurable illness, accompanied by an unacceptably low quality of life. For those with terminal illness, palliative care is the best, if incomplete, solution. Every doctor who respects life should regard it as a personal challenge to become familiar with its principles and practices.
The second group, which includes some of the frail elderly, make a more compelling case for euthanasia, it seems to me. For them and for others for whom palliative care is insufficient, nobody has a generally acceptable answer. Because there is no effective remedy for their plight, some say that their killing should be permitted.
Their distress is more often psychological than physical. If the law were changed to allow emotional distress as the grounds for the legal killing of these and similar persons, it would inevitably be subject to unpredictable, uncontrollable and probably undetectable abuse. The lives of many sick but unwanted persons would be endangered. However distraught we may be at the unrelieved distress of others, we may never say that it is permissible to directly take life intentionally.
Even for these unfortunates, we must not be tempted to embrace legal solutions which are likely to have inhuman outcomes which society would come to regret. The combination of faulty ethics, unfettered emotion and lack of expertise of various kinds provides the context in which some would seek a legally expedient solution, at any price. The occasional killing of a distressed person may be tolerated by society, and not morally judged. But legalised euthanasia would be a great disaster, as experience in Holland indicates.
“Would universal, good palliative care be enough to meet the call for euthanasia?” The answer is that, while it would go a long way, and is highly desirable in its own right, it would not be a complete answer, for two reasons.
Firstly, I have already discussed those for whom palliative care has only limited benefit in eliminating emotional distress. We have to recognise and concede the limitations which such suffering imposes on the human spirit, and the extent to which it may undermine the acceptance of life. The well cannot simply impose their own standards on the suffering. But I am sure the solution is not to make a bad law which could endanger an unknown number of the unwanted sick, disabled or retarded. A society which adopted this policy would stand self-condemned for its inhumanity.
Secondly, euthanasia is not being sought only for certain groups of sick persons. By some, the right to determine the timing of death is sought for any person who finds his/her life intolerable for any reason. In Holland, the courts have now accepted that a psychological reaction to severe illness, such as anxiety, may be enough to warrant medical killing, even in the absence of physical or psychiatric distress. Ideologues, who are the minority among the supporters of euthanasia but who are the more important in the debate, want the same. Some Dutch lawyers have commented that the current change of emphasis in Dutch law represents “a fundamental change of attitude in regard to the inviolability of the human individual and of respect for life”. That being the case, no amount of good care or reasoned discussion will suffice for those of that view, because they are driven by a blinkered adherence to a philosophy, rather than reason.
The more truly human option is summed up in these words of the Declaration on Euthanasia of the Catholic Church’s Sacred Congregation for the Doctrine of the Faith, expressed in phrases, the like of which are too seldom heard today: “those in the medical profession ought to neglect no means of making all their skill available to the sick and the dying; but they should also remember how much more necessary it is to provide them with the comfort of boundless kindness and heartfelt charity”.
* Dr Brian Pollard is a retired specialist anaesthetist and former Director of the Palliative Care Service at Concord Hospital in Sydney. He is the author of Euthanasia: Should we Kill the Dying? and has published in the Medical Journal of Australia on Dutch euthanasia.