Applied Discussion 4: Applying Virtue Ethics

6 Trust, Suffering, and the Aesculapian Virtues

Annette C. Baier

Aesculapius, son of Apollo, and pupil of centaur–physician Chiron, son of Chronos, was the Zeus-designated god of healing. What are the Aesculapian virtues, the vir- tues we want in those to whom we turn to heal and alleviate our ills? Aesculapius was son to serene, expressive Apollo, and pupil of the son of Chronos, god of time, and I shall suggest that both calm communicativeness and right timing are important vir- tues in healers. I have argued in a recent essay (Baier 2004) that virtues, or at least such virtues as show in our relations with each other, essentially are the wanted attitudes to the realization that we are in one another’s power. This combines the Aristotelian view that virtues are what enable us moderately social beings to flourish, or at least not languish, with the Hobbesian reminder that we can have reason to fear each other’s power. Virtues, on my analysis, are personal traits that contribute to a good climate of trust between people, when trust is taken to be acceptance of being, to some degree and in some respects, in another’s power. The Aesculapian virtues, therefore, will be those found in trustworthy healers, and will include due awareness of the power discrepancy that the doctor–patient relationship involves, the will to communicate appropriately with the patient, and to take timely action of various sorts. As will soon become abundantly clear, I am taking ‘healing’ to include relief of suffering, as well as restoration of health. In the latter part of this chapter I will discuss the disagree- ment on euthanasia, and consider what the trustworthy physician will do when her incurable and suffering patient requests that his life be ended.

In addressing these issues I shall be calling on personal experience, consultation with medical care experts, reading, and philosophical reflection on trust, and on life and death. My main concern is with what it takes to be a trustworthy health professional. But since physicians and nurses usually depend on managers and administrators for the conditions in which they work, I will also give some attention to managerial contributions to climates of trust in hospitals. Again, since trust is a relationship that depends on all parties to it, I will also allude to what patients can contribute. Unrealistic demands by patients, and over-readiness to lodge complaints, or, at the other extreme, undue respect for physicians, and reluctance to ask questions of them, just as much as incompetence in caregivers, their failure to communicate, or their inconsiderateness, can contribute to a climate of mistrust that is not only unpleasant for those involved, but unhealthy and dysfunctional.

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136 Annette C. Baier

I take trust to be acceptance of some degree of vulnerability to another’s power, in the confidence that this power will not be used to harm or hurt one (Baier 1995). A good climate of trust is one in which the vulnerability is mutual, and people can be encouraged to trust each other. To create and maintain such a climate, some empowerment of the naturally weaker is essential, and recognition of rights is an obvious way to do this. In a medical context, codes of patient rights, and the provision of patient advocates, serve this purpose, since patients are the naturally weaker parties, especially given the fact that their competence to know their own minds and to assert their rights will be determined by their physicians, the very ones against whose possible abuses of power such rights should protect them. This is why third parties, such as patient advocates, are so important. Respect for patients’ recognized rights is the first virtue of health professionals, but it needs to be accompanied by other virtues, such as informing them of their rights. Of course physicians too have rights, including rights against patients. If patients survive their medical treatment or mistreatment, and are wealthy enough, they can sue their physicians, and some suits may be malicious. (Physicians now need, and have, their own international Medical Protection Society.)

A trustworthy health professional is, among other things, a properly trained one, competent to do what she undertakes to do, but who is to say what the proper train- ing is, and who should verify that the credentials someone claims to have are genuine? The trustworthy hospital administrator verifies the claimed credentials of applicants for its positions. And what should patients do, if anything, to make sure that their physicians and nurses are properly qualified? How informed should we be about the record and qualifications of our physicians before we trust them to care for us? Obvi- ously if one is taken ill, or is injured, while in a foreign country, one would be foolish to postpone getting medical attention until one has made inquiries about the compet- ence of the local health professionals, but what about one’s home town? How many of us do anything whatever to check out the professional record of primary care phys- icians, surgeons, or other specialists, before becoming their patients? Would we be accepted as their patients if we were known to have done some prior detective work on them? Yet, at the very least, we should be able to know that they are properly qual- ified for the work they do.

We usually in effect delegate the checking of credentials to regulatory officials, but some sort of check on their performance, by someone presumed to be trustworthy, is also in order. To check up on someone is to show some hesitancy about trust- ing them. And here we are faced with the regress of distrust—the more we insist on checking, the more people there are to be checked up on, and security becomes a vanishing goal. At some point, we just have to trust the checker, and, for the average patient, there is no particular reason to think that the most reliable checker is oneself. We are forced to rely on the medical profession itself, on hospital administrators, and on government agencies, so should be loud in our criticism when any of these fail us in this vital matter. (I am not going to address the question of whom we must trust for a sufficient provision of health-care workers, important as that issue obviously is, but restrict my remarks to trust in those who are provided. But it is very easy to see that if there are not enough of them to meet needs, then they will be overworked, exhausted,

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possibly resentful, and so less than reliable in their service to those who must rely on them.)

We hope for a sufficient supply of properly trained physicians and other health workers. What sort of training, beyond the obvious, such as training in the recognition of the symptoms of meningitis and other immediately life-threatening conditions, do we want our physicians to have had? And what sort of regular retraining? Most medical schools now put some emphasis on communicative skills in addition to scientific training and clinical know-how. It is fairly obvious that some human-relations skills are part of what it takes to be a good physician, and that these cannot always just be grafted on to a good medical scientist, as an afterthought. Some aptitude for dealing with people should be a minimal requirement, not an optional extra, in a successful entrant to medical school. If fear and distrust are to be avoided in hospitals, there must be something of the human touch in physicians, surgeons, and other experts. (In the nursing profession its importance has long been recognized.) For fear, even terror, is what results when a person is subjected to procedures, sometimes painful ones, that she does not comprehend, for reasons she has not been made to understand. A significant number of the complaints made by hospital patients (about 12% in my local hospital) directly concern poor communication, and a much higher proportion (up to 70%) have been judged to have that as their background cause (data from Denys Court, of the Medical Protection Society, New Zealand branch, and from Ron Paterson, New Zealand Health and Disability Commissioner).

And what sort of training is needed to address the ethical questions I am addressing? I should emphasize that I am a philosopher, not a social scientist nor a person with any special knowledge of the health professions, and I am acutely aware of the limitations this imposes. The interrogative mood dominates in this essay, and not all my questions are rhetorical. I find the issues I am addressing very difficult, and, because of their seriousness, sometimes difficult to address with detachment. (Hence the indignant rhetorical questions, later in this essay.) To prepare myself to write on this hard topic, I have, of course, read books and articles by physicians, and I have consulted with several physicians, including experts in palliative care, with two lawyer–physicians, with a midwife who is a hospital maternity manager, with two nurses, a patient advocate, a government health official, and a hospital manager of clinical services. This consultation gives me, at best, some second-hand knowledge. I did, decades ago, while a student, work for a short while as an unqualified night nurse in a private hospital. I found that experience very stressful, and resigned after the first death that occurred while I was on duty. (So I do not lack sympathy with those health professionals who want, at all costs, not to be thought responsible for a patient’s death.) Apart from that brief nursing stint, my only first-hand knowledge of health professionals, with their strengths and their weaknesses, comes from experience as a patient, and as a concerned relative of several patients, with all the limitations that implies. Still, my own experiences in hospitals inevitably influence my views, and the strength of my feelings, so I will mention some of them.

Thirty years ago I was by my mother’s hospital bed when she died, choking on her own blood, after two long weeks of post-surgical agony. The surgery had been for

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138 Annette C. Baier

cancer of the esophagus. After her death I wrote to her surgeon, saying that his was a terrible profession. I wrote that he had tortured my mother by his refusal to admit that the surgery had failed, and by his consequent unwillingness, despite our plead- ing, to give much morphine, on the usual grounds that, while relieving her suffering, that would have depressed her breathing. (This man, decades later, was honored by the Queen of England for his services to the hospice movement, but I am told it was surgery he himself underwent, not my charges, nor those of his other patients or their relatives, that led to his change of heart.) Palliative care, I am assured, has come a long way since my mother’s death, but part of the problem is of deciding when post-operative care should become palliative care, and when that becomes terminal care. Care of those who have not been cured had not advanced discernibly when my nephew eight years ago died of a brain tumor, after two operations, the second to treat an infection arising from the first. His complaints about his terrible headaches were treated as mere malingering, and it was only when the infection worked its way out to the skin that the second surgery was done. He was a young man in his early thirties, a long distance runner, and of course was depressed at his steadily worsening condi- tion. He made several unsuccessful suicide attempts, before finally, in an emaciated state, dying a morphine-hastened death in hospital. The morphine, of course, was officially given to relieve his suffering, not to give him the death he had for months so desperately sought. For it was deemed unethical, and was in any case illegal, for any physician to administer euthanasia on request.

My experience when I myself was the patient (in Britain, in Australia, in the U.S., in New Zealand), in much less dire circumstances, has been generally good, at the receiving end of excellent care, effective pain relief, and considerate treatment, even from grossly overworked emergency department staff. But one recent unhappy exper- ience made me ponder the question whether individual virtues in health-care workers are enough to ensure good care, if the organizational structure in which they work is defective. Or should I say if the managers are failing in their professional role, and are lacking the special virtues their job demands? For successful care of a patient, includ- ing communicative success, requires not merely a physician’s will and ability to give appropriate medical treatment, and to explain it to the patient, but reliable access to the means of giving that treatment, and to the means of getting timely information to a patient.

Here is the story of what led me to these thoughts. I had been admitted to my local hospital after a four-hour ambulance trip, following an internal bleed, one that neces- sitated blood transfusions. Since the bleeding into the stomach was continuing (and maybe because my eighteen transfusions were depleting the blood bank), surgery was planned to investigate the cause of the bleeding, and try to stop it. (A longer than usual gastroscopy, not much fun to undergo, had, because of blood clots in the stom- ach, failed to disclose the source of the trouble, and had reactivated the bleeding.) I had been given a careful explanation of what surgery was planned, what risk was involved, and what ‘discomfort’ to expect after the operation. I had signed the con- sent forms, after a very long discussion with the ward’s helpful resident surgeon, in the small hours of the night. I was told to expect surgery during the next night. I lay in the ward waiting to be taken off to theatre, and lay and lay, for an endless and sleepless

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night. My inquiries to nurse and house surgeon as to what was happening were met with: ‘We don’t know, there is no response from the gastro-surgical unit.’ My initial resolve to be calm and accepting did not extend to being calm enough to forget the matter and sleep, so my night was very unpleasant. It was not until next day that I learned that an industrial accident had led to all operating theatres being needed for emergency surgery on the victims, so that the gastro-surgical team had gone home. And my own blood count in fact improved during that night of waiting, so it was decided to put my surgery on hold until diagnostic tests could be done. I tried to receive this news graciously, but felt some resentment about the anxious waiting that I had already been put through, unnecessarily, or so it seemed to me. For, had I been told of the surgical emergency, and the consequent cancellation of my own operation that night, I could perhaps have slept, or at least lain in less anxious sleeplessness.

Why was I not informed at the time that my surgery that night had been cancelled? Who, if anyone, should have let me know what was happening? Quite possibly there was no one whose appointed task it was to get word to the medical ward about the changed surgical priorities. I certainly did not know whom, if anyone, to blame, and tried not to blame anyone. (It did not occur to me to lodge a complaint, and certainly no one suggested that I consider that, although the New Zealand hospital I was in is governed by an official code of patient rights, whose last-listed right is the right to complain. But no copy of this code lay with the Gideon Bible by my hospital bed, and I was not mobile enough to see the copy posted on the wall by the ward’s reception desk.) Hospital procedures may not have given the job of informing patients whose surgery has been unexpectedly cancelled to anyone in particular, especially not in con- ditions where the surgical services were being taxed to the limit. Proper principles of triage would not assign high priority to this job. Yet it would have taken merely a mes- sage to the ward, and this need not have been done by any of the overtaxed workers in the surgical units, but by some porter or telephone worker. The people in the ward, nurses and house-surgeon, did try to find out what was happening, but given the casu- alty victims with whom the hospital was coping, the surgical units were overwhelmed, and not answering the phone. My interests got lost in the shuffle, as by correct triage principles they should have, if anyone’s had to. (I am told that sometimes those await- ing surgery wait as long as three days, on nil-by-mouth, so my unpleasant wait was nothing exceptional. But it was not the delay as much as the lack of information that I felt aggrieved about.) To minimize avoidable anxiety, in such circumstances, differ- ent procedures would have to be in place, and that might take initiative and skill in design of procedures at the administrative level. The high incidence, in U.S. hospit- als, of death from medical error, making the risk of such death greater than that of death on the roads, was judged to be due not to ‘bad apples’ among the physicians, but mainly to procedural defects (Gawande 1999). To remedy that, we need initiative and vision at the managerial and administrative level. Their special virtues are vitally important if the virtues of the other experts in hospitals are to deliver their best yield in keeping patients’ trust. I trusted my surgeon, later, to operate on me, to remove the by-then-discovered tumor, but it took an effort to do so, since, rightly or wrongly, I could not help thinking that my interests could not have been of great importance to him on the night of the cancelled surgery. This was doubtless unfair, but it is not so

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easy to be scrupulously fair when one is weak, dependent, and vulnerable, as hospital patients typically are.

That brings us to the patient virtues that are needed if there is to be a good climate of trust in hospitals and other places where health care is given. Is patience a virtue in a patient? Should I just have waited patiently until someone did see fit to tell me that my surgery had been postponed or cancelled, and why it had? And should I have trusted that my real interests were safe, before, during, and after surgery, whether that was planned but cancelled, or planned and carried out? Maybe my anxiety the night I expected but did not get surgery did me no physical harm, and maybe I should have trusted that, if anything really affecting my interests had been at stake, I would been given more attention. But anxiety, just as much as physical pain, is something we hope our physicians will help us to minimize, not increase. It does not seem to me that patience is always a virtue in a patient, especially a suffering patient, and certainly not that implicit trust, rather than vigilance, is in order when one has no choice but to put one’s life and well-being in the hands of medical experts. Patients, as well as hospital administrators, have some responsibility to protest when things seem to go wrong, and perhaps I should have lodged a complaint about my unpleasantly anxious night, as much for the sake of future patients, as to express my own grievance. Patients have some responsibility to lodge complaints, and to communicate their fears and concerns, not just passively wait for professionals to ask questions of them, and give them information. But equally clearly, some patience, and some trust, is called for, on the part of patients. Threats to sue do not improve mutual trust. Nor is impa- tience going to get one moved up the triage ordering at an emergency department, or alter the urgency classification of one’s awaited surgery. Displays of impatience, by patients, hinder rather than help health-care workers to do their job properly. But even there, as my next little story of another unpleasant night in hospital will show, a person can perhaps be too patient.

On a recent occasion, after accompanying my husband, who was suffering from an acute infection, to hospital by ambulance, I spent twelve hours, from 6 p.m. to 6 a.m., sitting by his bedside in the emergency department, before he was admitted to a ward and I was told to go home. The admitting doctor, seeing my exhausted face as I sat on the hard upright chair where I had spent the night, said: ‘They should have sent you home hours ago.’ But ‘they’ were too busy that night to think about me, and I was not their charge. It was for me to ask them if I should go, not for them to look after me as well as their patients. In fact I think they welcomed my staying, since I could do little unskilled things for my husband, things that otherwise they would have had to do. And I stayed, because I wanted to be sure that he was being looked after. But perhaps I overdid the patience and would-be helpfulness that night. Hand- ing over to the professionals, trusting them, and going home to get enough sleep to be able to play my role as hospital visitor next day, might have been better. The vir- tues needed in those receiving health care, and in their concerned relatives, are those that are functional for the care of patients to go best. And that takes some but not too much patience, some trust but not uncritical trust.

I was not seriously harmed by either of my very unpleasant recent nights in my local hospital. Physicians and nurses have the job of looking after their patients’

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serious health interests, not making them or their relatives feel good. Relief of pain and other forms of distress is an acknowledged part of their responsibility, but only, it seems, if that does not threaten health or life. It is the prolongation of life, not the relief of suffering, that is the time-honored goal of the medical profession, the main goal recognized in the Hippocratic oath. And even Aesculapius had to be punished by Zeus for finding a way to make humans immortal, so he too seems to have thought life-prolongation to be an important goal, perhaps the main one. This ordering of priorities is the reason why professional medical associations typically oppose the legalization of voluntary euthanasia, and claim that it would be ‘unethical’ of doctors to end their suffering patients’ lives, even when begged to do so. Certainly we would not be able to trust physicians who were overeager to administer euthanasia. Nobel prize winning novelist Coetzee has one of his characters, a helper at an animal rescue center, with the job of ‘putting down’ animals no one can care for, respond, when asked if he does not mind this task, ‘I do mind. I mind deeply. I would not want someone doing it for me who didn’t mind. Would you?’ (1999: 85). Those whom we can trust to administer euthanasia will indeed be restricted to those who do mind doing what they do. Yet, as the memory of my mother’s and my nephew’s terrible suffering makes me ask, who can trust a physician who refuses to relieve suffering, however great, if that is thought to interfere with even the faintest chance of success of treatment, or, who, once that chance is gone, refuses to shorten the suffering, even after the wish to end life has been repeatedly expressed by the patient? If anything is ‘unethical’ behavior in physicians, it surely is letting their patients suffer, refusing their desperate requests for assistance in hastening death, when other ways of ending suffering are failing. The general recognition by bio-ethicists that compassion is a virtue in a healer is accompanied by occasional warnings to physicians against ‘pseudo-empathy’ with their incurable patients, against empathy that might lead them to a too ready agreement with a patient’s expressed view that death may be the best option (Muskin 1998). We find warnings to physicians not to take patients’ requests for assistance in hastening death as necessarily anything more than a sign that they are suffering from clinical depression, or even as invitations to be contradicted, as pleas to authoritative father figures for reassurance that their life is still worth preserving (Meier, Myers, and Muskin 2000: 185–8). Suffering is not being taken very seriously, as long as claims to intolerable suffering are treated with such patronizing disbelief. The deck is stacked against the suffering person who wants her life to be ended if her very expression of this wish is likely to be taken to show that she is clinically depressed, and so without power to give or withhold consent to any medical measure.

The relief of suffering, including migraine pain, menstrual pain, and acute arthritis pain, does not seem to be given very high priority in medical research, nor in decisions about government subsidies for medicines. (I have known two migraine sufferers who were driven to suicide to end their pain, one by shooting herself in the temple during an attack.) Must an understanding of the causes of pain be left to torturers, as understand- ing trust was largely left to con-artists and terrorists (Baier 1995)? Even if suffering is part of the human condition, it is surely the business of the medical profession to understand pain and its causes, and to do whatever can be done to minimize or end it.

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Before the advent of anesthesia, physicians had to be capable of inflicting great pain, but now there is no excuse for them to let their patients suffer, and only the excuse of illegality for their refusing to help patients to end their suffering when hope of cure is gone. Would it help enable physicians to speak up for euthanasia, and be personally willing to assist a patient to die, when the patient seriously requests that, if death were reconceptualized as permanent general anesthesia? Anesthesia is the spe- cialty of those who work in pain clinics, and who oversee pain relief after surgery, so it would not be a great extension of their field to make them the ones trusted to administer voluntary euthanasia. Even after the advent of anesthesia, electric shock treatment for mental illness was for decades given without it, so trainee doctors had to steel themselves to witness, and help give, some very cruel forms of treatment.

Labor and childbirth can be extremely painful, and I gather that, although more and more women, especially women physicians, are opting for epidural anesthesia in labor and childbirth, the medical profession is not rushing to make its use routine. A midwife of twenty years’ experience explained patiently to me that labor pains are ‘natural’, and unlike other pain in not being a signal of something wrong. She also explained that the use of epidural anesthesia in labor can weaken muscle contractions, and so lead on to the need for further undesirable ‘interventions’, to forceps births, sometimes to emergency Caesarian section. And for epidural anesthesia to be even an option, the birth must be taking place in a hospital, with anesthetists available. For all these reasons, most midwives and obstetricians encourage its use only for what are expected to be particularly difficult births, prearranged to occur in a hospital. But not all long labors and difficult births are expected in advance, so many women will still have to console themselves during severe labor pains with the thought that this pain is natural, and with the hope that there is to be a ‘happy outcome’ (although there is also a not insignificant risk of postnatal depression). Some women, after one exper- ience of ‘normal’ birthing without anesthesia, now opt for Caesarian section for any subsequent pregnancy, so memorably dreadful is their experience of labor and par- turition. Labor can go on for days. Even for gastroscopies, whose length is measured in minutes, patients have to be held down. It is not surprising if many health profes- sionals have had to develop a certain degree of callousness, just to do the job expected of them. But such callousness, however functional in some contexts, surely cannot be deemed an Aesculapian virtue.

Socrates, when about to drink the hemlock, said to his friends that he owed an offering to Aesculapius. Barbiturates of the sort recommended by the Hemlock Soci- ety, for use by those who judge they have suffered enough, are not always obtainable by those who want to self-administer them. For example, in New Zealand, even sym- pathetic physicians cannot prescribe them to patients. So what do New Zealanders do when they judge that their life is no longer worth living, indeed is intolerable? Refuse liquids until they lapse into unconsciousness (about one week), then die (after about another week)? Or, if not willing to keep going for another week (or in ignorance of this method), jump off a roof, or try to drown themselves in a nearby creek, like my nephew? Resort to plastic bags? Desperate people are often entirely dependent on the compassion of relatives, who risk prosecution for manslaughter if they actively assist, or depend on their primary care doctors, who can (and often do) rely on the dubious

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doctrine of double effect to prescribe lethal doses of painkilling drugs, or on nurses and physicians in hospitals and hospices, who can, in the same way, fudge the line between palliative care and euthanasia without putting themselves at significant risk of legal prosecution.

No wonder there is often despair, and sometimes terror, in sick rooms and hos- pitals! For we should not expect health-care workers to have to take any risk of pro- secution, in their surely appropriate role as relievers of suffering. The physician one can trust is the one who will remind one how one can bring about one’s own death by exercising one’s right to refuse fluids, the one who does not have to risk prosecu- tion if more active assistance in dying is given, and the one who would so assist one, when one unambiguously and repeatedly requests such assistance. (Or when one has in advance made clear the conditions in which one would want to die, and not retrac- ted that directive, or has appointed some trusted person to take the decision for one. For the sad fact is that those most in need of medical assistance in hastening death are those least able to make clear requests, and be deemed in their right mind when they do ask for such assistance.) As the opponents of any law change or change in codes of medical ethics on this matter emphasize, the potential for abuse of the right to euthanasia is great. Anyone who supports such change must have some suggestions to make about how such abuse is to be prevented, or at least made highly unlikely. Or do we just have to accept that ending our terminal suffering is not something we should expect anyone to do for us, nor even help us do for ourselves? That it puts a heavy psychic cost on relatives who do the helping is undeniable, even if they avoid prosec- ution. But have we no moral right to professional help in hastening death when we unambiguously and repeatedly ask for such help, even when our condition is incur- able, our pain or other distress extreme and unrelieved? In New Zealand, where I now live and expect to die, the current list of the rights of the recipients of health care makes no mention of a right to be spared avoidable suffering, let alone any right to be helped to die. There is a right to be treated with respect, a right to dignity, to ‘ser- vices of the appropriate standard’, provided in a manner that ‘minimises the potential harm to, and optimises the quality of life of ’ that person, rights to communication and information, to make informed choices, a right to the presence of a chosen com- panion for ‘support’, and a right to complain. But no right to be spared avoidable suffering, unless that is thought to be covered by the right to ‘minimized harm and optimized quality of life’, or to ‘dignity’, or to ‘informed choice’. (One patient advoc- ate told me that she takes the right to informed choice to license her to inform her clients that Australia suffers less than does New Zealand from what she termed ‘para- noia about opiates’.) I suspect that the silence on ending suffering is intentional, in this code of rights issued by the New Zealand Health and Disability Commission. For to recognize a right to be spared avoidable pain and distress would be to run afoul of the existing law on homicide, if such a right could be claimed in cases where the suffering can be ended only by ending the life.

I also suspect that the blank wall I encountered when I tried to get data on com- plaints about unrelieved suffering is no accident. The categories of patient complaints currently used at my local hospital do not include failure to relieve suffering. The greatest number of registered complaints come under the heading of (lack of) ‘skill

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and competence’, that is, violation of the right to services of an appropriate standard, and perhaps some of those complaints took the form ‘I was left in great pain’. But I had no success in trying to find out what proportion, and had the same sort of failure when I consulted those with access to wider data. (The Medical Protection Society, and the New Zealand Health and Disability Commissioner.) The medical profession seems to choose not to investigate this matter, or perhaps to think that, since they are asking patients to give their pain a measure, from one to ten, they cannot be charged with ignoring pain. Suffering may indeed be difficult or impossible to quantify, but complaints about unrelieved suffering are as easy to count as any other complaint. The medical profession seems to prefer not to have them counted.

In hospitals some unnecessary pain, and some ‘medical misadventures’, are due to lack of competence in professionals, rather than to negligence or ill-will. As patients, we must expect sometimes to fall into the inexpert hands of those who are still learn- ing to perform delicate procedures. Lack of skill in learners, as well as superior skill in the senior physicians supervising them, is to be expected in teaching hospitals. For only supervised practice on patients can give the learner the skills that are needed. Since few patients would consent to being such a learner’s first try at a dangerous pro- cedure, patients are usually kept in the dark about the degree of experience of the per- son in whose hands they find themselves. Trust that the supervising senior physicians know what they are doing when they delegate delicate tasks to their junior assistants, whom it is part of their duty to train, may be difficult to sustain, given reports of how those same senior physicians take care to see that their own sick relatives are kept out of the hands of beginners (Gawande 2002: 58). Ignorance on the part of patients is probably best in this matter, since ‘in medicine there has long been a conflict between the imperative to give patients the best possible care, and the need to provide novices with experience’ (Gawande 2002: 57). But even if a medical learner may unintention- ally inflict pain, no very great knowledge is usually needed to relieve it.

A really shocking first-person account of what it can be like to be seriously ill is to be found in Tiger’s Eye: a Memoir, by Inga Clendinnen, distinguished historian of humanity at its worst (Mayan human sacrifices, the Holocaust, the treatment of the Australian aborigines). She came to suffer from a rare liver disease, active autoim- mune hepatitis, which caused great tiredness, an unsteady gait, swollen feet, ankles, and abdomen, a brittle, easily broken skin, and excessive bleeding from any cut, as well as from gums and nose. After it had led to septicemia and liver failure, she was eventually given a liver transplant. The horror of what she suffered was compounded not just by the incompetence and inhumanity of some in the medical profession, but, in the earlier stages, by the inhumanity of some ordinary young people. There were, she writes, ‘a cluster of people, all under twenty-five’, waiting at a tram stop in the affluent Melbourne suburb of Kew, when Clendinnen, by then diagnosed but not successfully treated, staggered, collapsed, and bled in the street. ‘I lay, shocked and winded among my scattered parcels, blood welling out of my knees and arm, rehears- ing the brave and reassuring things I would say when someone came to help. No-one moved’ (Clendinnen 2000: 11). All looked away disdainfully, presumably taking her to be just an aging drunkard. (Perhaps older Australians would have been more will- ing to help, since Australians used to be very solicitous of their drunkards, in the days

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of beer swills before the pubs’ early closing. Is it only the yuppie wine-drinkers who are such bad Samaritans?) Clendinnen managed to get herself home, after her fall, but she was, most understandably, ‘in a state of serious disaffection from well soci- ety’ (ibid). Clendinnen experienced the different and lonely world of the chronically ill, and encountered the unkindness of strangers, as well as neglect from some whose special responsibility it was to give her care. (The hero of her story is her dentist, who realized that something systemic was causing the gums to bleed.)

Ironically enough the poor performance of the medical profession in caring for patients and in giving enough attention to the relief of suffering has been invoked by one opponent of legalizing euthanasia as support for his crusade against it. In his emotively titled book, Forced Exit: The Slippery Slope from Assisted Suicide to Legalized Murder, Wesley J. Smith asks:

If doctors currently do such a poor job, generally, of relieving the pain and depression of suffering people when doctor-induced death is illegal, what kind of a job would they do if killing a patient were considered just another ‘treatment option’, and a less expensive and time-consuming option at that? To put it another way, why should we trust doctors to kill us, when too often they don’t do an adequate job of caring for us? (Smith 1997: 147)

Compassion is a virtue we all, medical professionals or not, need to cultivate. And the first step we must take before we can think properly about the euthanasia issue is to recognize a right to considerate treatment by others, and, from physicians, relief of pain. Both the proponents and at least some opponents of legalizing euthanasia should be able to agree on that.

Minimizing physical suffering is usually called ‘pain management’ by health professionals, or at least by their managers. I was told by a hospital manager that patients who complain of not getting enough pain relief (and clearly such complaints are known to occur, even if they are not counted) run the risk of being taken to be ‘substance abusers’, who may be thought to have themselves to blame if the usual dose of morphine, or whatever, does not work for them. Their complaints, I was given to understand, are not always taken very seriously in our hospitals. Pain thresholds do vary, as does willingness to endure pain, and a good caregiver will try to fit the dose to the need of the individual patient. No one goes into hospital expecting no ‘discomfort’, and some patients may make unreasonable demands. But that does not mean that complaints about degree of suffering can be dismissed, nor that such complaints as are made about suffering can be ignored. Nor can dealing with them be taken merely as a matter of ‘the management of expectations’. If one enters a hospital expecting to suffer excruciating pain, one will feel terror of health professionals, not trust. As my hospital manager put it to me, a balance has to be struck between informing hospital patients of the risks they run of ‘adverse outcomes’, and keeping patients calm and cooperative. The adverse outcomes which patients risk include infection (10 percent of hospital patients now contract an infection while in hospital), wrong medication, and such things as painful throat burns when oxygen equipment catches fire, or lung collapse when a central line goes in the wrong direction while being put in by an inexperienced learner (Gawande 2002). A conservative estimate of the risk of being harmed rather then helped by what happens to one in New Zealand

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146 Annette C. Baier

hospitals is 12.9 percent, and apparently most of these medical misadventures are not admitted to their victims (Davis et al. 2002). (See also Institute of Medicine Report, ‘To Err is Human’, 1999). An experienced nurse suggested that our public hospitals should have, written over their doors, ‘Abandon hope, all those who enter here’. Such a warning might not be a good idea, therapeutically speaking. Yet it is different only in degree from informing each incoming hospital patient of the known risk of ‘adverse outcome’, and that seems required by the recognized right to information, before consent is sought for treatment.

From a therapeutic as well as a managerial point of view, expectation management has to be geared to mood management, and a trade-off of patient rights is often needed. I was not told, when I had my stomach surgery, that I might lose my spleen, and I am not sorry about that, as I would have been much more worried beforehand had I foreseen the actual outcome of my surgery. Nor was I told, before my first long unsuccessful gastroscopy, just how long that might go on, merely how long such a procedure usually took. Had I known what was coming, I might not have been able to swallow the equipment and cooperate with the procedure. The good healer strikes the right balance between informing the patient what might be involved in the procedure she is undergoing, and keeping her in the frame of mind that is best for her chances of a good outcome. For example, I was told before my stomach surgery that I might lose much of my stomach, and that there might be a need to go further to surrounding areas, but the spleen in particular was not singled out as at risk. (Stomachs can regenerate, but not spleens.) This vague advance warning was probably the best to give me. I do not envy the professionals their decision-making responsibilities in balancing the patient’s right to know against the physician’s duty not to harm, and to give what reassurances are possible. But lists of patient rights do serve a purpose, even if conflict of rights cannot be ruled out. To include relief of avoidable suffering in our list of patient rights might complicate some decisions, but would also clarify at least some matters, for professionals and for patients. Physical agony is an evil to be avoided or lessened, not just a nuisance to be ‘managed’.

Would it be plausible to construe a right to treatment that ‘optimizes quality of life’ as covering not only pain relief that does not threaten life, but also, in some cases, assistance in dying? The New Zealand code takes optimizing of quality of life to require health workers ‘to take a holistic view of the needs of the consumer in order to achieve the best possible outcome in the circumstances’. Could death be such a best possible outcome? Could a timely end to a life optimize its quality? I myself see no reason why we should not say that it could. Death is not the antithesis of life but one of its inevitable limits, and no more necessarily detracts from the quality of the life it concludes than do the facts of conception, gestation, and birth, at the start of the life. A ‘holistic view’ cannot take life to be endless, but must take its ending, and the quality of that ending, as part of the life. David Hume, dying at sixty-five of ‘a disorder in my bowels’, wrote in his brief autobiography that ‘I consider . . . that a man of sixty five, by dying, cuts off only a few years of infirmities,’ and cheerfully records ‘I now reckon on a speedy dissolution.’ His philosophical attitude to his approaching death, which, since he had no belief in any afterlife, he took to mean his ‘annihilation’, puzzled and distressed James Boswell. In their famous conversation, Hume raised Lucretius’

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question why we should feel any sense of deprivation at not living through the time after our death, any more than at having missed living through the time before our birth. This question was given a plausible answer by Samuel Johnson, who, when the disturbed Boswell reported this conversation, gave it as his opinion that Hume either was lying, for effect, or was a fool, since, by his professed beliefs he would at death lose all he had. (He also said that if Hume really did not believe in an afterlife, he had no reason not to lie!) More recently, Thomas Nagel has argued for the asymmetry of reasonable attitudes to the timing of our birth, and of our death. Our birth defines who we are, whose life it is whose length and quality is in question. If we see death as near, we lose the prospect of an open-ended future, in which goods can at least be hoped to outweigh evils. ‘Life familiarizes us with the goods of which death deprives us’ (Nagel 1979: 9). Even so, how many of those familiar goods is enough? Hume’s admired predecessor, the philosopher, Anthony Ashley Cooper, Third Earl of Shaftesbury, who died in 1713 at age forty-two, in Naples (where he had moved because of his weak lungs), mused in his notebook: ‘Enough then . . . Pass on, move. You have seen. Now let others see’ (Shaftesbury 1900: 261). But Thomas Nagel muses less stoically: ‘the fact that it is worse to die at 24 than at 82 does not mean that it is not a terrible thing to die at 82, or even at 806’ (Nagel 1979: 9).

The realization that one is having an untimely death may indeed lower the qual- ity of one’s life. The last utterance of the German painter, Paula Modersohn-Becker, as she died of childbirth complications after the birth of her first child, when she was thirty-one and at the height of her artistic powers, was, appropriately, ‘Schade!’ (‘A pity!’). But the fact that there can be tragically untimely deaths does not mean that the longer the life, the better. Some short lives may have very high quality, and some very long ones may be filled with a sorry string of fears, losses, pains, and disappoint- ments. To live through two world wars, and on into a century of continuing terrorist threats, as some have, may be to live too long. Just as premature birth does not benefit an infant, who can then be said to have been born too soon, so ‘post mature’ death may lower the quality of the life it ends. Meier, Myers, and Muskin (2000) tell of the desperate sixty-nine-year-old Mrs C, with a ten-year history of systemic lupus erythem- atosus, severe osteoporosis, and muscle wasting. She was fed with a gastrostomy tube, which caused acid leakage into the abdominal wall. She was unable to sit, read, or write. She had repeatedly requested assistance in ending her life during the year before she died. She had succeeded in having barbiturates prescribed to her, but expressed anger at her doctor for not helping her more actively, for abandoning her when she needed him most. This doctor had deliberately refrained from telling her that refusal of fluids would accomplish her wish to die, so afraid was he of seeming to advocate a hastened death. With her husband’s help, Mrs C finally managed to swallow ice cream contain- ing thirty (crushed) barbiturate tablets, and died. Her death was neither peaceful nor well-timed, but angry and desperate, leaving her husband understandably distressed at his role in her death, which was definitely not a good one. Had her physician helped her to die a year earlier, when she requested that, perhaps just by informing her of the control she herself exercised by her power to refuse hydration, her life would surely have been better, not worse, when judged in terms of overall quality. I say ‘surely’, but there is no agreement among philosophers, or anyone else, on how much length

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of life matters, and whether, simply because of mortality itself, ‘a bad end is in store for us all’ (Nagel 1979: 10). Whether death can be a good outcome, or at least the best possible one in the circumstances, must be left for individual judgment, and both our law and our medical practices should show respect for those who do at a particular time come to judge that, for them, death is the best outcome.

Hume, in his essay on suicide, paraphrased Seneca: ‘I thank providence both for the good, which I have already enjoyed, and for the power, with which I am endowed, of escaping the ill that threatens me’ (Hume 1995: 583). But this power of suicide, or at least of quick suicide, is not one that always lasts until it is most needed. Seneca himself found that he needed help, to be put into a hot bath, after he had cut his wrists but not bled sufficiently to bring death. And those who choose dehydration as their escape route not only die slowly, but may be foiled, once unconscious, by health workers who insert a drip. To be effective, the power for which Seneca gave thanks needs supplementation by the right to be assisted, or at least to have our last decision respected, should we decide to escape its evils when life becomes intolerable. We are a species who look ahead, and know that we shall die. Epicurus was wrong when he said that death is nothing to us, once we reflect wisely about it. The tim- ing and manner of our death rightly matter to most of us. Our human consciousness of mortality is naturally accompanied both by some natural fear, and some wish to avoid the worse forms of dying. To want the say about when to die is a natural devel- opment of our self-consciousness, our wish to plan our lives wisely, and leave our affairs in order when we go. Seneca said that the wise man lives as long as he ought, not as long as he can. Opponents of legalizing voluntary euthanasia might seize on this as showing that the so-called ‘right to die’, if recognized, would quickly degen- erate, with the help of burdened relatives, impatient heirs, and impoverished health services, into a ‘duty to die’. But equally, those who oppose euthanasia are in a paral- lel danger of turning the right to life, especially when construed as inalienable, into a duty to keep living. Seneca and Solomon are surely right that there is a ‘time to die’, a time when it would be unseemly to struggle to live longer. Of course, physicians too have views about what their rights and duties are. And just as no patient should be forced to live longer than she wishes, no physician should be forced to adminis- ter euthanasia against her beliefs. But she should, I believe, be pressured to inform the patient of the lethal effects of refusing fluids, and to refer the patient whom she refuses active quicker help to one who is willing to give it. The autonomy of both patient and physician ought to be preserved, and surely can be, without clash. Med- ical professionals, especially psychiatrists, are in the dangerously powerful position of being able to declare a patient to be without mental competence, and so unable to exercise autonomy. If suicidal intent is taken as an indication of depression, and so loss of mental competence, then incurable patients are left entirely at the mercy of their physicians. Autonomy that is at one’s physician’s discretion to deny one is no protection against medical abuse of power.

Doctors are notorious for thinking themselves godlike, and by beginning this essay by noting Aesculapius’ divine ancestry, I may myself have been guilty of encouraging such a delusion. The assumption made by some physicians that they have the abil- ity to see beyond the ‘manifest content’ of their patients’ words, when those patients

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beg for death, to their different real meaning, is of a piece with their insistence, even when they are in favor of legalizing euthanasia, that the license to perform it should be theirs alone. That they alone should be able to prescribe potentially lethal medica- tion is one thing. That they alone can administer a lethal dose to someone who wants it is another. As I write, Lesley Martin, a registered nurse, is in a New Zealand prison after being found guilty of attempted murder, after giving her mother, on request, an overdose of morphine, to end her horrible suffering from cancer of the rectum. (Or is it telling about it, publishing her book, To Die Like A Dog: The Personal Face of the Euthanasia Debate, that she is really being prosecuted for?) It may be sensible to require some medical training in those permitted to give assistance in dying. But Mar- tin had such training. And certainly there should be some careful check on whether the patient who requests assistance in dying does really want it, and whether, if he does, that is for his own sake or for his burdened relatives’ sake. But an eight-step procedure, such as that advocated by physician and bio-ethicist Linda L. Emanuel, in ‘Facing Requests for Physician-Assisted Suicide’ (Emanuel 1998), seems excessive and excessively lengthy for the desperate patient. (The first proposed step is to check and if necessary treat for clinical depression. The second is to assess other aspects rel- evant to the patient’s capacity for rational decision-making, and if necessary have a proxy appointed. If the request for assisted suicide is not withdrawn, the third step, repeated in the fifth and seventh, is to engage in structured deliberation, including making sure that the patient is aware of the control he himself possesses through his right to refuse fluids. The fourth step is to try to treat the root causes of the patient’s request. If it continues, the physician checks again to make sure the patient has full information, then, in the sixth step, involves consultants. In the seventh, after a third check that the patient knows what his options are, and knows what he is request- ing, unwanted intrusive treatment such as intravenous drips are removed. Should the patient still be requesting more active physician assistance, the eighth and final step is to refuse it, explaining that it is illegal.) Must a patient repeat his request for physician- assisted death eight times before he is taken seriously enough to be believed, then only to be definitely refused? Would it not be kinder to stress the illegality of what is being requested at the beginning, and to go on to remind the patient what he can do for himself?

We can turn to the Netherlands, Belgium, and Oregon for help on what checks and monitoring should go on, once assisted suicide is not illegal, and on who should check and monitor the checkers and monitors. These important details have been worked out in their law changes to facilitate euthanasia on request while still protect- ing a patient against abuse of the new permission. The drafting of any new law on euthanasia needs cooperation between lawyers, physicians, nurses, bio-ethicists, and the public, and study of what can be learned from the pioneering measures already in force in some places. One thing that does already seem to be emerging is that, once there is a recognized right to be assisted to die, many patients who make the initial moves to request such help will not carry through to actually get it. Acquiescence from physicians in a request to die, far from being taken as encouragement to die, is sometimes sufficient to let a patient rest easier, and let death come without finally invoking the special measures that are available to hasten it. To adapt an insight of

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150 Annette C. Baier

Nietzsche’s, the thought of physician-assisted suicide can get one through many a bad night.

My very modest input into this collective thinking about what we should want our laws to allow, and to facilitate, is that the patient’s primary care physician is usually the physician who is best placed to know if the patient means what she says when she requests death, and best placed to know whether or not she is requesting it mainly for her relatives’ sake. Indeed she would often be the one most trusted by the patient to administer euthanasia, or at least to call in the anesthetist. Specialists and surgeons are rarely known as well by the patient as the primary care physician, and, despite their expert knowledge of the medical condition of the patient, they cannot expect to have as much insight into her state of mind, nor to be as readily trusted in such life and death decisions, as the less specialized doctor who has looked after her health for years. Physician Sherwin B. Nuland, author of the disturbing book, How We Die, is of the opinion that, in U.S. hospitals, ‘the least authoritative member of the team in any good hospital is likely to be the one who has the widest perspective on care’ (Nuland 2002), so the not-so-specialized primary care doctor, already known to the patient, is an important person to consult on end of life decisions. And along with this should go a standard disclosure, by primary care doctors, of what attitude to euthanasia they hold, and a standard offer to discuss with patients their advance wishes. At the very least, all terminally ill patients should be informed by their physician how much is in their own control, by exercising their right to refuse fluids. We all need to know whom we can and cannot trust to help us in our final illnesses, and physicians need to know what requests are likely to be made of them. And of course it must be the patient who makes the request for assistance in dying, or appoints someone to act for her, not just her relatives, who may have their own, usually compassionate, but sometimes self-serving, reasons for wanting the dying process to be hastened.

As things are at present, the best relief from suffering, and the easiest deaths, go on in hospices. Many supporters of the hospice movement oppose a law change, arguing that the law changes we need, to improve the quality of life at its end, are those that would enable more people to have access to compassionate terminal care of the sort that hospices provide for some (mainly cancer) patients. It seems that it is not so much that these hospice supporters are against giving patients the dose needed to relieve suffering, even when that hastens death, as that they, like the medical profession in general, are against any law telling them in what exact conditions they may do so. It is the regulation and red tape that legalized euthanasia would bring, not the actual euthanasia, which the medical profession seems to be against. It would indeed be tra- gic if a law change made it more difficult, not easier, for those who request assistance in ending their life to get that help. (For instance, should the rule that it not be given to those suffering from clinical depression be taken to mean that anyone who has ever had anti-depressants prescribed to them is to be denied the right to euthanasia.)

According to Nuland, and oncologist Charles F. McKhann, physicians, especially specialists, often see their patients’ deaths as their professional failures, and tend to abandon their patients once hope of cure is gone—indeed a study by H. Feifel has shown that, as a profession, medicine attracts people with particularly high personal anxieties about dying (Nuland 1994: 258; McKhann 1999: 134, 253). Apart from

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those working in hospices, and the few who work in (usually understaffed) pain clinics, physicians see themselves as in the business of death-prevention, of rescue and cure, not of relieving the sufferings of those who cannot be cured. So our hope of compassionate physicians, once the time inevitably comes when our chances of cure are gone, may be as faint as any hope of a death with dignity. As Linda Emanuel writes, ‘The obligation to provide comfort to the suffering is an ancient professional obligation that is not well implemented in this technologically powerful era’ (Emanuel 1998: 647). Nuland approvingly quotes Philippe Aries’ comment that death is ugly and dirty, and that we do not easily tolerate what is ugly and dirty. He himself writes, ‘I have not seen much dignity in the process by which we die’ (Nuland 1994: xvii), and ‘By and large, dying is a messy business’ (Nuland 1994: 142). Far fewer than one in five, he writes, have a quick, easy, and unconcerned death (ibid). Nor is dirty and undignified the worst of it. He estimates that one in five of the patients whose death he witnessed died in very great suffering (Nuland 1994: 140). The worst indignity the dying can suffer is to have their wishes disregarded. When they wish that their suffering be ended, and have expressed this wish unequivocally, either at the time or in an advance directive, they surely should be helped to die. When they have expressed the wish to live as long as possible, even in great pain (and can afford continued care), that wish too must be respected. Codes of patient rights typically put great emphasis on dignity and autonomy. The highest form of autonomy, as Seneca saw, is to have the say about the timing of one’s own death. We exercise this form of autonomy as much when we decide to have our disease treated, in order to prolong our life, or, when treatment has failed, to wait for our disease to kill us, as when we take our own life, or request help in so doing. To be denied this right of decision is the ultimate indignity.

As long as we have to depend on the courage, or even the recklessness, of our phys- icians and nurses, and have to depend on our own continued communicative powers, and others taking their exercise seriously, to say when we have had enough, we must go into our terminal illnesses either great heroes and heroines, or else in plain terror of prolonged, unrelieved suffering or other intolerable distress, perhaps of ‘literally drowning in our own secretions’ (McKhann 1999: 156, quoting a neurologist on the sort of deaths some of his patients undergo, unless they are assisted to die). A law change seems clearly called for, both on grounds of compassion to patients, and as protection for decently compassionate health-care workers. It would also help to allow them to be in a position to claim honesty as a professional virtue. As things now stand the humane physician who helps a patient to die has to engage in some form of self-protective doubletalk, to escape prosecution.

Nuland tells of the death by suicide of Nobel prize-winning Harvard physicist, Percy Bridgman, in 1946. Bridgman was seventy-nine, in the final stages of cancer, when, after finishing the index to the seven volumes of his scientific writings, and putting his affairs in order, he shot himself, leaving a letter stating, ‘It is not decent for society to make a man do this for himself ’ (Nuland 1994: 152). Only a law change, enabling physicians to help people in Bridgman’s situation, without fear of sanctions, can end this ‘indecency’ in our society, and make medicine a fully humane profession. James H. Buchanan prefaces his book, Patient Encounters (Buchananan 1989), with Jurgen

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152 Annette C. Baier

Thorwald’s statement: ‘The status and progress of medicine ought always be judged primarily from the point of view of the suffering patient, and never from the point of view of one who has never been ill’ (Thorwald 1957). This seems undeniable. Yet we obviously cannot insist that any surgeon first undergo the form of surgery he is to per- form on his patients. This would be an especially impractical form of the old advice: ‘Physician, heal thyself,’ though it did take a physician trying surgery under curare, long used as an anesthetic, before credence was given to patient complaints that the drug merely paralyzed, without anesthetizing (Smith et al. 1947). How, short of doing to them what they do to their patients, can we get the medical practitioner to adopt the patient’s point of view? Recognizing compassion as an essential Aesculapian vir- tue would be a start. If medical professionals are to free themselves of the charge of prolonging the agony of the dying, they must be given the legal power to administer euthanasia on repeated serious patient request. Only then will compassion become a fully functional virtue in the medical profession. But it is sixty years since Bridgman’s forced suicide, and we still make those in intolerable final suffering kill themselves, sometimes incompetently, or persuade their relatives to do it for them, as best they can, and be prosecuted for their pains. We shall not have a decent society, nor a humane and trustworthy medical profession, until we follow the lead of the Netherlands, Bel- gium, and Oregon, and change our laws officially to allow physician-assisted death on patient serious request, along with full protection against abuse of such power. Until such a law change, we patients cannot fully trust our physicians. However many other professional virtues and skills they may possess, if they have not the will and the legal power to end suffering at patient request, so cannot show ultimate compassion, how can we trust them?

I have in this essay spoken as much about rights as about virtues. No personal or professional virtues can do their proper work unless the laws and institutions struc- turing our lives and our work are in order. When they are not, we need the special virtues of campaigners for law change—vision in designing better laws and codes of rights, and pertinacity and hope in the fight for their acceptance.

ACKNOWLEDGEMENTS

For their generous help with this essay I thank Michael Ashby, Marjolein Copland, Denys Court, Jennifer Galbraith, Tina Gilbertson, Grant Gillett, Cath Leckie, Kristin Kenrick, Frances Matthews, Sarah Naylor, Ron Paterson, Angela Scott, Saul Traiger, and Richard Whitney. I am also indebted to the editors of this volume and to the publisher’s readers for constructive suggestions.

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