To Help Patients End Their Life When They Choose is An Act of Care - Martin Winckler (Marc Zaffran, M.D.)

Life is a journey. It sounds like a cliché, but the analogy works. We’re embarked on a boat – our body – that we didn’t choose. Our parents made that choice – or that mistake – for us, and we bear the consequences. We spend many years depending on and relying on adults, long before we can make decisions by ourselves. From late childhood or early teenage we long to be free. But to be officially allowed to drive, drink, vote, get married, we need to reach an arbitrary age limit. Once we do, it doesn’t get much easier, but at least, we have the feeling everyone lives under the same principles. Right ?

Wrong.

In many developed countries, personal autonomy is not only valued, it is promoted and protected. This has been especially true in healthcare, since the second half of the 20th century, in reaction to the many unethical medical experiments that were performed on helpless people, not only in Nazi Germany during the Second World War, but also in many other countries – including the United States and Canada – in times of Peace. Today, along with principles such as benevolence, nonmaleficence, confidentiality and justice, autonomy – i.e. : informed consent and respect of the patient’s decisions – is the cornerstone of Bioethics and of Medical Practice.

In countries where individual freedom is highly valued, patient autonomy is also at the core of medically assisted personal choices such as pregnancy, abortion or sterilization. In Quebec, where I live, patient autonomy goes as far as securing confidentiality for patients who are over 14, and letting teenagers make their own decisions for all kinds of health issues, be it the use of contraceptive devices or the course of a cancer treatment.  

Sexuality-related decisions are especially delicate ones. On that sensitive matter, patient autonomy can be in conflict with cultural values and social etiquette related to gender roles, sexual activity, marriage, pregnancy, the status of the fetus, and so on. In many countries, these issues have not been satisfactorily resolved and women remain submitted to female circumcision, forced unions, unwanted pregnancies and punishment of behaviors that are allowed to men. In these instances, doctors do not come to the rescue. They even, sometimes, take part in the abuse. Actually, until only a few decades ago, doctors were among the strongest opponents to women’s sexual autonomy in developed countries. Why ? Because most doctors were Men.  

Men have always opposed women’s reproductive autonomy because we are biological organisms. And as such, along with survival, reproduction is one of our deepest urges. Just as we compete for vital resources, we compete for mates and reproductive opportunities, and women’s reproductive strategies conflict with men’s. As happens in all sexed species, individuals for whom the cost of reproduction is highest are the choosiest. Therefore, whenever they can, females carefully choose whose genes they will mix with their own, whose offspring they will carry and invest in. This leads to intense competition among members of opposite sexes. Male jealousy and possessiveness appear irrational – and morally unacceptable – in human societies, but they are deeply grounded in our biological past and our neurological setup.

All elementary moral behaviors similarly stem from biological realities. Consider altruism : as much as we are guided by genes that seem « selfish », as Evolutionist Richard Dawkins suggested, we still display altruistic tendencies. If we didn’t, we’d let our children and our mate(s) die – which wouldn’t be good for our own survival and that of our genes. And if humans didn’t often care for strangers, they wouldn’t have much chance of survival as a species.

Thus, to care for our kin, but also for total strangers, is not selfless altruism. I care for you because I expect you to care for me. Care carries reciprocal and extended benefits. Obviously, some people are more prone to care than others : human beings can carry genes for total selfishness or for total devotion and both behavios are genetically viable since both subgroups – and all the variants in between - are present in the general population. And predictably, among doctors, some are much more (or much less) caring than others.

We go to doctors because they are professional caregivers. We expect them to heal us – or at least try to – without judging us. When Medicine was in its infancy, healers were Medicine-Men, Witch-Doctors, Shamans, Sorcerers and Priests. Because they were expected to be powerful, they were also expected to be both benevolent and malevolent.

When science replaced irrational beliefs, medical progress brought antibiotics, anesthesia, surgery, endoscopy, and shamans turned into professional caregivers - Doctors.  

Unfortunately, science didn’t change the way we see doctors – nor the way they see themselves. Too many doctors still view their knowledge and skills as a means to reach personal notoriety, success and wealth, and aim to establish power, much as shamans did, while they should use their powerful tools to ease human suffering. Too many doctors still see Medical Practice as a personal privilege, not as something that should benefit humankind as a whole. One consequence of this reluctance to give up power is the refusal to acknowledge that a person should decide whether she wants to live or die. 

Long before I became a Physician, I was puzzled by a paradox. All valid and competent adult men and women are expected to behave as decent citizens in many social areas, including a professional activity, raising children, voting, paying taxes, abiding the law, taking care and/or supporting their parents and/or disabled relatives, etc. For all this, they are trusted to make sound decisions. As long as they respect the law and are responsible for the consequences of their actions, their autonomy is not only respected but encouraged : it is what makes a society work. And yet, even though they are supposed to decide how to live, how to give life and how to support their families, people cease to be considered rational or respectful when, suffering from a terminal disease, they declare their wish to put an end to their own sufferings and terminate their own life.

In Bioethics, the most recent thinking about patient autonomy states that a patient’s decision not to be treated should always be respected. If a competent patient has the right to choose how he is cared for, then their choice should include the decision not to be treated at all. But it looks like choosing to end one’s own life is consistently met with horror or, at the very least, the impression that He/She doesn’t really mean it. He/She can’t want to die.

We dread the death wish of our dear ones because we know that people do die, often in a very painful way. We feel guilty and grieve when someone suddenly dies by accident or disease, and even more when they decide to take their own life. We ask ourselves : «  Could I have helped ? Is it my fault ? What did I do wrong ? »

By all accounts, these questions, as respectable as they may be, are not always appropriate. Accidents happen. Diseases can kill fast, and suicide is a mysterious and often unpredictable behavior, for which we often have no explanation. Depression, despair, shame, sometimes even anger or sudden loss of control are the common explanations. But the truth is : very often we don’t know, we don’t understand why someone might want to end their life : they don’t tell us why ; they might not even know why.

Conversely, in the case of very sick patients, we should understand - and they tell us - that the wish to die is a plea to escape intense, permanent and hopeless suffering. We usually respond with an exhortation to seek psychotherapy, pharmacological pain control and moral or spiritual support because we have a very hard time accepting that to them, the wish to die might be preferable, or even more reasonable than the medically accepted (and often palliative) options.

Resistance to that idea is especially strong for people whose religious beliefs include that suicide is a sin. But many non-religious people also strongly reject suicide. Starting with doctors.

As a physician and an ethicist, I fail to see how ending one’s own life because of intense suffering should be considered morally less valid than, for example, deciding to bring to life another being. In essence, to conceive and/or bear a child and raise him are some of the most serious decisions humans make. They don’t only involve ourselves, but also our partner and the child-to-be who, in fact, never asked to be brought to life – nor exposed to all its potential sufferings.

On the other hand, in past decades, many countries have also decided that a woman should not be penalized when she decides to end her pregnancy. Her body is her concern ; the fate of the embryo she carries is her decision. In many countries, doctors (and lawmakers) increasingly accept that women and/or couples who cannot conceive should be given the possibility of bearing a child through medically assisted means : Artificial Insemination, In-Vitro Fertilization, Surrogacy, etc. In Vitro diagnosis – to select healthy embryos whenever there is a risk of a lethal or invalidating disease – is also becoming more common. All these procedures are performed in support of patients’ autonomy as they enhance one’s choice to conceive new lives. They also underline how much we care about quality of life, be it that of a woman, an infertile couple or a not-yet-born individual.

It is therefore difficult to understand why there is so much resistance to the idea that ending one’s life might also be guided by an expectation of quality. I am not going to attempt a long philosophical reflection on the subject : it would be much beyond the scope of my abilities. I will only state that, in my opinion, quality of life lies first and foremost in the mind and perception of the individual whose life is at stake. If I am able to make informed decisions as a citizen, it should not be up to anyone but myself to decide whether my life is of sufficient quality to go on, or not, with it.

Why, then, it is so unbearable for doctors to accept that one of their patients might ask to help them die, and why so many physicians – however legal medically assisted suicide is in their country of practice – would refuse to help patients who make that request ?

When asked why they have become doctors, most physicians answer they wanted to « save lives ». Saving lives is a noble goal, but a very unrealistic one. In developed countries, most doctors don’t save lives : for nowadays, most people are in good health, and in no immediate danger of dying. Besides surgery and emergency medicine settings, there are very few opportunities for a doctor to « save » a life on his shift : even in critical care units, there are many factors and actors – doctors and nurses - involved in an individual’s survival. Saving lives is a team effort.

Outside of emergency and critical care, doctors do something less heroic but nonetheless essential : they work to ease sufferings. Defining a doctor as someone « who saves lives » is not only inaccurate, it is morally ludicrous : it suggests that healthcare professionals who are not in a position to perform open-chest surgery or resuscitation are « lesser » caregivers. We know this isn’t true. In a developed society, all healthcare professionals practicing outside of hospitals – such as nurses, physiotherapists, speech therapists, midwives, family physicians, mental health workers, etc. – are essential, both as team members and as individuals. Together, they fight disease, rehabilitate and care for patients and prevent illness and deaths through information, education, immunization and many other unspectacular actions.

Doctors have the extraordinary privilege – and carry the extraordinary burden – of informing and – more often than not – influencing patients’ decisions. Unfortunately, the brain of modern humans is identical to the brain of our Pleistocene ancestors. This means that on some unconscious level we still view physicians as Shamans or Witch Doctors. And unfortunately, doctors (who have the same Pleistocene brain as anyone else) share that archaic view. And, when in shaman mode, physicians can be very reluctant to let patients take one of the most important decisions of their life.

I believe their reluctance is the result of archaic mental beliefs and mechanisms that might have been adapted to prehistoric settings but which are not adapted to our current way of life. The first of these is the feeling that MD’s are super-powered individuals for whom fighting Death is more important than easing pain and comforting patients. Since « saving lives » is a very uncommon situation for most physicians, we can state that this feeling is a delusion.

The second belief is that illness invariably impairs a patient’s judgment. This, too, is a delusion – and mere prejudice.

Unless a person is clearly « out of their mind » (hallucinating or cognitively severely impaired) most patients, even the very sick, can clearly state what they want or do not want : presumed autonomy and thus informed consent are the very foundation of modern Bioethics and healthcare.  

The third misbelief is that quality of life depends mostly on quality of care, i.e. : appropriate medical decisions and implementation of guidelines. It doesn’t. Adequate medical care is, no doubt, essential. But it cannot overrule a simple, irreducible notion : unless they cannot express it at all, no one can state the needs and values of a patient better than patients themselves.

(Recent research has shown that patients in a deep coma can communicate with caregivers through appropriate IRM technology. It is a chilling discovery : patients who were previously thought to be incapable of any cognitive ability are actually capable of communication – and thoughts. Even more chilling, in my opinion, are the ethical questions following that discovery. Are we not ethically bound to seek cognitive activity in all comatose patients ? And if we do communicate with them, don’t we have an obligation to ask if they wish to remain in that physically – but not mentally – comatose state ?)  

Many physicians carry on their shoulders – and sometime in their brains – a prejudice as powerful as the male prejudice held against women’s autonomy until a few decades ago. This prejudice lies in the belief that, not unlike initiation rituals in secret societies, medical knowledge infuses those who have acquired it through professional training with a higher understanding and higher moral standards than non-physicians. This belief obviously derives from the archaic view that Medicine Man, shamans and Witch Doctors were gifted with powers that allowed them to communicate with spirits or beings living in a supernatural dimension. When one sought help from shamans, obedience was mandatory ; it was, after all, a matter of life or death, and whatever the outcome, the shaman would reap its consequence – terror, grief or gratitude – as a personal way of strengthening his status.

Today, we know physicians are scientifically trained caregivers. When they diagnose, they do not read charred animal bones, they suggest tests. When they treat, they do not mix strange potions and animal fluids, they propose appropriate drugs or procedures. And when a patient is reluctant to undergo surgery or chemotherapy, they are supposed to insist – or at least suggest they get a second opinion.

Unfortunately, many doctors still see themselves as modern-day wizards whose goal is to fight Death with every single magic instrument of state-of-the-art technology. Whether the patient wants it or not. After all, they know what is good for their patients.

When death occurs, physicians too often see it as a personal failure – instead of acknowledging in advance the limits of their « powers » and the eventuality of death even when they do everything they can. When patients follow another course than the one they prescribed, they feel guilty, and sometimes vexed, to see that their professional opinion was not trusted. It is not surprising then that some doctors would see a patient’s wish to die peacefully as misguided and unacceptable and even, sometimes, as a personal insult to their competence and a blemish on their notoriety and image. Not only are they unable to cure the patient, they are also powerless in giving him reasons to live. As if Doctors were the only persons that give a person a reason to go on.

When it is not based on religious beliefs, medical resistance to hear a patient’s plea to a peaceful end is, in essence, fueled by vanity.  

Until recently, in many developed countries, suicide was considered a crime against society. Suicide attempts among teenagers and young adults is still – with reason – believed to be a reaction to stress and pain in exceptional circumstances. We have strong reasons to believe that taking one’s own life is not something that the suicidal person would have done in other circumstances. This is not the case when a person has been severely ill for months and is in a situation that will never improve their quality of life as measured by themselves. When every day they ask those patients: « Are you comfortable ? How do you want me to help make you more comfortable ? », healthcare professionals should be able to hear : « I would like you to help me die painlessly and peacefully at the time I choose. » And, when they can, they should be able to grant that wish, as well.

I am not saying that all healthcare professionals should help patients die. When a woman seeks an abortion, some professionals decline to help her – and as much as they should not use their authority to deprive a woman from her freedom to choose, they should not be compelled to perform abortions. First and foremost, because one doesn’t perform correctly an act one is morally opposed to.

In several countries – Colombia, the Netherlands, Belgium, The Luxemburg, Canada, Switzerland – and North American States (Washington, Oregon, California, Montana, Vermont), assisted dying is now legal and physicians do assist patients who wish to die. Physicians who are willing to help patients die peacefully on their own terms should not be prosecuted. Nor should they be seen as uncaring carers or as morally flawed professionals. Every day, many of us grant our late relatives or friends’ wishes to be buried or cremated or see their memory is preserved and their actions continued. If we consider a dying person’s wishes to help them live after they depart to be sacred and worthy of commitment, shouldn’t we view their wish to die as sacred, as well ? And when we do not, isn’t it because we somehow feel that our view of what is sacred is more important than theirs ?

Physicians are morally bound to view themselves as the helpers the supporters the advocates of their patients, not as their judges or their moral superiors. In that perspective, they also should have the humility to admit that their knowledge and skills must serve patients, not rule them. They should know that hearing and acknowledging the wish to end one’s own life, however saddening, isn’t a surrender or a cop-out, but a professional duty.   

They should have no doubt that, sometimes, when all other options have been ruled out or exhausted, to help a patient choose their way to end their life and to accompany them till the end is not a failure to be a good caregiver, nor is it an act of mercy granted by a superior authority but is, in fact, one of the most ethical, one of the most disinterested acts of care that one can perform for a fellow human being.