End of life care, advance directives, “euthanasia”

Refusing and “choosing” treatments
May 30, 2009
A story that illustrates the concept of “futility”
June 4, 2009
Refusing and “choosing” treatments
May 30, 2009
A story that illustrates the concept of “futility”
June 4, 2009
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End of life care, advance directives, “euthanasia”

Euthanasia is in the news again. On May14th Margaret Somerville, the ethicist from Montreal ran an op-ed piece in the Ottawa citizen. Her anti active-euthanasia (or anti-assisted suicide) position seems to be grounded in a couple of ideas. One is that if a society permits active euthanasia then it contributes to a lessening of respect for life in that community, and somehow the state would be complicit in this, and this would cause “death to lose its moral context and us to lose our proper emotional response to it” (Ottawa Citizen May 14th page A15.) The other argument is that permitting any form of euthanasia is to set foot on a slippery slope which leads inevitably to a taking of lives that ought not to be taken.
Well, let’s go back to the beginning and run through some of the classic positions and arguments on the topic. First, a word about words. Some words have value connotations or associations – they carry their evaluative force right on the surface. Other words can be used without any particular value connotations or associations. So, for instance, the word “murder” carries its values on the surface. There are no “good” murders. To call an act a murder is to identify it as a wrongful killing. But not all killings are murders and not all killings are wrongful. So, for instance, a killing in self-defence would be viewed by many people as morally justifiable, as would be a killing of a combatant on the battlefield at a time of war. As we explore the ethical acceptability, or otherwise, of “euthanasia” we have to be careful how we use the words. Some people would associate a value connotation with the word “euthanasia,” typically a negative connotation. Others view the word “euthanasia” as value neutral. What we want to do is to explore the ethical acceptability of actions or practices, rather than the ethical connotations of a word. We want to make up our minds if it should be ethically acceptable for a physician (or anyone else for that matter) to deliberately deliver a lethal dose in order to end a life, or to choose not to start a feeding tube to prolong a life, or to refrain from performing a life-extending procedure, not to determine if the word “euthanasia” has ethical associations one way or the other. So, for the time being I will use the word “euthanasia” as if it was value-neutral, and will look more closely at particular actions to make our ethical evaluations. So, let’s start with some distinctions so that we can keep our ideas straight and our terminology clear.

Active and passive euthanasia.

Active euthanasia refers to deliberately taking a step, or performing an action that will cause the death of another person.
Passive euthanasia refers to refraining to take a step or perform an action that would save or prolong a life.

Voluntary, non-voluntary and involuntary euthanasia.

The voluntary/non-voluntary distinction has itself been further refined and there is some confusion and inconsistency in the way the words are used – I will use them like this:
Voluntary euthanasia occurs when a capable person chooses or decides to take a step or perform an action that will cause his or her death, or to refrain from taking an action that would prolong his or her life.
Non-voluntary euthanasia occurs when the person is not capable of making his or her own choice.

Involuntary euthanasia occurs against the express wishes of the person concerned.
So we can see how the categories combine. There can be Voluntary Active Euthanasia, Voluntary Passive Euthanasia, Non-Voluntary Active Euthanasia, Non-Voluntary Passive Euthanasia, Involuntary Active Euthanasia, and Involuntary Passive Euthanasia. We will deal with each of them in turn, but before we do that there is one further preliminary step. I will adopt a general stance in favour of freedom. That is, I believe that in an open and democratic society the default position should be one of freedom. We should be able to do… whatever, unless there are good reasons why we should not. That is, I will assume that it is those who would limit freedom who need to show why freedom should be limited, rather than those who would perform whatever act we might be discussing to show why they should be permitted to do it. So to apply that idea to euthanasia, it is up to those who would prevent people from practising any particular form of euthanasia to show why it should be prohibited, rather than up to those who would perform the act to show why it should be allowed.

Voluntary Active Euthanasia

In Canada it is not against the law to take one’s own life, it is not illegal to commit suicide. What is contrary to the criminal code is to counsel or aid someone in committing suicide. (Section 241 of the Criminal Code of Canada, C46) In Canada, what is often called assisted suicide – or physician assisted suicide is contrary to the criminal code. So, if the person does it him or her-self it is within the law, if she or he needs assistance, rendering that assistance would be unlawful. Now, answering a question about the legality of an action is not the same thing as asking about its ethical acceptability, but here the discussion becomes intensely personal. Can we put ourselves in another’s situation, feel his pain, or know her prospects? Can we stand outside and say – Aha.. intractable illness, only expected to live a month, severe and unremitting pain – in this circumstance it would be ethically acceptable for this person to choose not to continue with a life that is full of suffering without prospect of relief – but here in this other situation for this other person the pain is not so bad, the prospects a little better, for this person he should choose to live and should try to make something meaningful of his suffering. The point I am trying to make here is that if people are entitled to choose how they live their lives, if they are entitled to choose how they make those lives meaningful – then we are stuck with people being able to choose when their lives lack meaning or to determine that life under the conditions available is not – to the person concerned, worth having. So far we have been looking at the issue from the perspective of the person concerned. We might, as friends or professionals, support a friend or a client as he or she explores the options available and seeks to make the best choice that she can – but we are not directly involved – we are not the decision-maker and we are not the agent that puts any decision into practice. The situation is different, in a community where assisted, or physician assisted suicide is legal. First, under these conditions there is some sort of legal process established that protects participants from prosecution if certain conditions are met, and second someone, other than the patient or client is involved in performing an act that ends a life. In a community like this the community has sanctioned the taking of a life under certain conditions. The community is complicit. Many of the arguments against permitting assisted, or physician-assisted suicide hinge on exactly this idea. What does it mean for a community to allow its citizens to take the lives of other members of the community? Has the community failed in providing good supportive palliative care, or adequate pain relief, or the conditions that allow people to live meaningful lives? Has a community that allows assisted suicide somehow failed to adequately respect human life as such? Then there are concerns about the people called upon to assist the dying person. Would permitting, for example, physicians to assist in acts of suicide place intolerable ethical burdens on those physicians? Would they become somehow coarsened to humanity and human suffering? (Or does that coarsening occur when physicians are forced to assist in extending a patient’s life when that life has become too great a burden for the person to bear?) This is the heart of the euthanasia debate – what sort of community do we want? Are we, as a community, prepared to be complicit, as we honour an individual’s choice (or right) to live – or end, his life as he sees fit? Or will we, as a community, turn away as people in their own intractable pain cry out for mercy?

Voluntary passive euthanasia
In Canada this is done all of the time. Any time a person refuses a potentially life-sustaining treatment, any time a person decides to forego a resuscitation attempt, any time an individual decides not to start a feeding tube we are practising voluntary passive euthanasia. In Ontario the right to refuse a treatment, including a life sustaining treatment is guaranteed in the Health Care Consent Act. (http://www.e-laws.gov.on.ca/html/statutes/english/elaws_statutes_96h02_e.htm) Section 10:
No treatment without consent
10. (1) A health practitioner who proposes a treatment for a person shall not administer the treatment, and shall take reasonable steps to ensure that it is not administered, unless,
(a) he or she is of the opinion that the person is capable with respect to the treatment, and the person has given consent; or
(b) he or she is of the opinion that the person is incapable with respect to the treatment, and the person’s substitute decision-maker has given consent on the person’s behalf in accordance with this Act. 1996, c. 2, Sched. A, s. 10 (1).

This is quite clear, the capable patient is entitled to refuse a treatment and the health care practitioner is required to honour that refusal. We can look at this in terms of rights and bodily integrity. The basic idea is that a person is entitled to say what happens to his or her body. My bodily integrity is mine to control. In the simplest possible terms I am entitled to say who touches me, how and for what purpose. (I can lose that “right” for instance if I am about to harm someone else, but generally I am entitled to say what happens to me. (Look what would be the case if this were not so. If someone else could use my body for his or her own purposes then I would be being treated as some sort of a thing – not a human agent with my own will and person. (This idea probably has its best expression in the writings of the philosopher Emmanuel Kant, but that could be the subject of a post another day.))

We should return to our word about words. In my travels around the hospitals and health-care facilities I work with I have often been told (and indeed often with some indignation) “We don’t practice euthanasia…” The person talking is normally thinking of active euthanasia and usually has ascribed negative value connotations to the word “euthanasia.” If you then ask if he or she would honour a capable patient’s refusal of a treatment then, of course the answer is always yes.

Non-voluntary active and passive euthanasia
“Non-voluntary” expresses the idea that the person is not capable of expressing his or her views and is not in a position to say what he or she would want. A person could be in this situation for a variety of reasons. The crucial distinction is between those who have never been capable of expressing their wishes concerning treatment and those that were once capable. In the case of people who were once capable a variety of mechanisms exist to allow the person to carry his or her wishes, expressed when he or she is capable, forward into a time when he or she is not. In written form these can be called “Advance directives,” “Living wills,” or sometimes “Odysseus contracts.” The general principle is the same. The person tries to articulate as clearly as possible how he or she would wish to be treated at some time in the future when he or she is no longer able to speak for him or her-self. The second similar, but slightly different, approach is to name a person to act on your behalf at a time when you become incapable. In Ontario this person can be named as “Power of Attorney” (either for finances or personal care, we are interested here in the Power of Attorney for Personal Care.) You give the power of attorney for personal care the authority to make the health care decisions that you would have made yourself if you were capable.

Advance directives and Power of Attorney for Personal Care
There is a great deal that is worth saying on this topic. In the first instance let me support both advance directives and the formal creation of a power of attorney for personal care. If you want to have your affairs in order and if you want to minimize your burden on your loved ones should you become incapable of speaking for yourself you really should have thought these things through. The purpose of both approaches is the same; it is to allow you to project your will now into a future when you are not able to speak for yourself. In an advance directive you specify the sorts of treatments you would not want under conditions that you also specify. And then your substitute decision-maker and indeed your health care team should honour your refusals of treatment. I say “should” here because there is an important wrinkle to advance directives and the direction they provide to your substitute decision-maker. Your substitute decision-maker is charged with following your instructions, or where no instructions exist, your values. However, the substitute decision-maker has to determine whether, or how, the instructions that you previously provided fit the actual circumstances you are faced with. To take a really simple example, suppose I told my substitute decision-maker or power of attorney: “No tubes.” Or, even more precisely, “I would not want a ventilator, and I don’t want tubes stuck in me.” What would happen if I was in an accident, or suffered from an illness where the best medical evidence is that with a short course of treatment, a treatment that would include intubation and ventilator support, I would be able to return to my previous way of life? What should my substitute decision-maker do? The general point is that it is very difficult, perhaps impossible to specify in advance all of the things that might happen and then to identify, again in advance, what I would want to happen under those circumstances. This means that the substitute decision-maker will always be in a position of having to work out what I meant, what I would have wanted had I known that I would be faced with this exact set of circumstances. To go back to our previous example, my substitute decision-maker should be able to work out that what I meant when I said “no tubes” is that I would not wish to spend the rest of my life on a ventilator or with a feeding tube, but if that sort of intervention was necessary, and highly temporary, leading to what I would view as a full recovery then I would have wanted it. The key piece for the substitute decision-maker is to try to honour the person that I am, to respect me and my values and to work out – from my life as I have lived it and from the instructions I have given, what I would want to happen.
Those who have never been able to speak for themselves.

The situation is different for people who either through incapacity, youth, or mental development have never been “capable” of consenting, or otherwise to medical treatment. For these people the guide of “previously expressed wishes” is not available to help a substitute decision-maker decide what to do, rather the substitute decision-maker has to use some sort of test of “best interests.” Now “best interests” will have to be the subject of another post because the overall topic is more complicated than it at first appears. The general issue is that for capable adults we pretty much allow the person concerned to self-define what would count as his or her best interests. That is, the capable individual creates or establishes his or her best interests. Best interests are defined from the inside. But that approach is not available for people who have never been capable. For those people the substitute decision-maker and care-giver are required to try to determine “best interests’ from the outside. This makes decisions about, for instance, end-of-life care extremely burdensome for those who have to make the decisions solely on their best evaluation of another person’s “best interests.” Here perhaps the best practical advice is to make such decisions collaboratively. We do better if we share the burden of decision-making with those who know the person well, those who are experienced in the care of people with the relevant illness or disease, and those who genuinely care about the person’s complete well-being.

So, to go back to our categories, passive non-voluntary euthanasia happens often. It occurs whenever a power of attorney for personal care, or substitute decision-maker makes the decision to forego or discontinue a possibly life-extending treatment or intervention. As we have noted, the role of the substitute decision-maker or power of attorney is to do what the patient him or her-self directed when he or she was capable. In those cases where the patient has never been capable the task is to try to determine the person’s best interests. Substitute decision-makers often feel this as a great burden and sometimes carry the burden of their decisions for the rest of their lives. Caregivers can help here as they describe, in realistic terms, what lies ahead and can help family members to see that under many circumstances the loving and respectful thing to do is to honour the patient’s wishes and allow a natural death to occur. (And this will need a further post too.)

Involuntary active and passive euthanasia
These would occur, either when a treatment was not offered or discontinued, when a patient expressly asked for it to be initiated or continued (passive involuntary) or when an action was taken to end a patient’s life, again against the expressed wishes of the person concerned (active involuntary.) It is difficult to imagine a situation of active involuntary euthanasia that would not be murder, so let’s leave those and look instead at passive involuntary euthanasia. Does this happen?
This issue is one of the most challenging in contemporary Canadian healthcare and our discussion will take us into a host of other areas, including resource allocation in times of scarcity, best interests and the concept of medical futility, all of which will require their own detailed posts and discussion. Let’s imagine a situation like this: (and let’s make it the easiest and clearest type of case.) Imagine that I am the patient and that, right now, I am clearly capable of making my own decisions. Imagine that I tell my Power of Attorney – and all of my health care team (and my lawyer too – why not) that I believe that more life is better than less. My personal conviction, let us imagine, is that any form of life is to be preferred to death, so, I demand that I be kept alive, for as long as is technically possible. I do not care about quality of life – I do not care about the indignities my body might suffer, nor the pain that I might need to endure, I demand that my body be kept alive, using whatever means medicine may have available – for as long as possible. Is my health care team bound to follow my wishes? If you ask this question of medical professionals – and I do, you get mixed answers; there is uncertainty in contemporary practice – uncertainty which has not been settled by the Courts (another question would be whether the courts would be the right place to settle such questions.) The nearest case is that of Samuel Golubchuk who died in 2008 in Manitoba before a decision was rendered in the courts. His family had sought continued treatment and the physicians caring for him had wished to withdraw treatment, but let us get back to our scenario. Let us imagine I now fall ill, am no longer able to speak for myself and I require – in order to keep my body alive, dramatic intervention, resuscitation, ventilator support and so on. Let us imagine that the very best medical evidence is that there is no reasonable prospect of any sort of recovery, and I will be unable to interact with the outside world, be aware of my surroundings – indeed I will be unaware of myself between now and the time I die. My underlying disease will inevitably kill me, in say 6 months, and all the interventions can do at this stage is keep my body alive for a little longer as we wait for the inevitable. Is the team required to, for example resuscitate should I arrest? or provide ventilator support, or insert a feeding tube?

Let’s look at the general issues. We mentioned earlier the dynamic of health care decision-making. Generally, I present with the illness and symptoms, the physician and care-giving team diagnose and propose the appropriate treatment and I, as the patient get to choose from amongst those treatments or to refuse all of them. Resuscitation is considered a treatment. (Incidentally, according the Canadian Medical Association’s Joint Statement on Resuscitative Interventions, which you might find useful if you are developing policy in this area (http://www.cma.ca/index.cfm/ci_id/33236/la_id/1.htm) resuscitation is a treatment which can be inappropriate or futile.) Any treatment may or may not be appropriate or advisable. It is the role of the physician therefore to determine if an attempt at resuscitation would be appropriate in any particular case. A physician could determine that, in the case I have described above, a resuscitation attempt, for me, would be inappropriate, and so should not be offered or performed. Can I, or my Power of Attorney, insist that it be performed? The answer ought to be no. The professional medical judgment that a particular treatment is futile, or inadvisable and so ought not to be offered, should be just that, a professional, expert judgment. However, the reality is that few physicians would insist on writing what is sometimes called a `medical DNR` without the patient`s or substitute decision-maker`s consent. Physicians are often unwilling to go through the protracted arguments and disputes that may ensue. This seems to leave the physicians at the mercy of the patient who demands care that they deem to inappropriate or futile. We will look in detail in another post at the concepts of medical futility and inappropriateness in far more detail, but let us content ourselves here with just one distinction. The concept of `medial futility` is extremely powerful, but its application is quite limited. The judgment that a treatment is medically futile is an expert medical judgment, and so falls within the domain of the experts – in this case physicians. It is a judgment that a particular treatment cannot work to bring about the effect for which it is intended. It is not a judgment that the treatment would be of no benefit to, “or is not good for,“ the patient. (The determination of whether or not a treatment `benefits` me, or is good for me, should be mine.) That is, resuscitation in the case that we have described, may have the effect that it would keep my body alive a little longer. As such the treatment is not `medically futile.` It succeeds in doing what it is intended to do – restart the heart and perhaps with ventilator and other support get oxygen and blood flowing. I may be comatose, unable ever to know that this event has occurred, I may not know that I am still alive but whether this is a `benefit` to me is up to me – and I have already indicated, when I was capable, that I viewed life under these conditions as worth having, as a benefit to me. There is another type of judgment – one that often gets buried in discussions of `futility` and the inadvisability or inappropriateness of treatment – and that is the judgment that a treatment ought not to be offered because either it is somehow not cost effective, or because it is a benefit that we – the community, do not wish to fund. So, it could be said, that when resources are scarce (and incidentally, they are always scarce) we should not fund the “benefit“ of keeping bodies alive when the person concerned has no prospect of recovery and when he or she has no prospect of interacting with his or her environment – indeed when the person has no sense of `self` at all. Now these judgments get made all the time – sometimes explicitly (for instance through the use of less costly generics in the place of brand name drugs, or cheaper prosthetic devices instead of the `Cadillac` version (maybe Cadillac won`t do here any more – perhaps Rolls Royce) but often not explicitly, for instance, when issues of cost-effectiveness or low benefit get described as medical decisions. The difficult question is: Who should decide these issues and how?

So, we haven’t really answered the question of involuntary passive euthanasia. I am inclined to think that it occurs, and indeed that it needs to occur, on two quite different grounds. In the first case physicians ought to be in the position to make judgments that a treatment is medically futile – that it cannot bring about the effect for which it is intended. In these cases physicians ought not to offer futile treatments and patients ought not to be able to substitute their judgment of medical benefit for their physicians. (I should stress the necessity of a good process here. The physician should be acting within the standards of good practice and he or she may well consult with colleagues, interdisciplinary teams, ethics teams and so on and document that discussion carefully.) In those cases health care facilities and management ought to support physicians in these types of decision. However, these situations are relatively rare. Far more common, given an environment of scarce resources are the situations where there are limits on the treatments that may be made available, where those limits are caused by scarcity, low probability of benefit, limited benefit or a disagreement between the patient and the community about whether the outcome constitutes a benefit at all. But who should decide those cases? Not, I would say, the physician at the bedside. As a community we need to determine our health care priorities and we need to be prepared to stick behind those priorities – which in turn means limiting the freedom of both patients to choose the treatments they might want and physicians to prescribe treatments the community has decided not to fund. But that requires a proper, open, community-wide discussion. (And another post.)

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