Rights, Best Interests and JJ’s tragedy.

Rights, best interests, and perpetuating tragedy.

 

Background

On November 14^th Justice Gethin Edward ruled in a Brantford Ontario court that the parents of an 11 year old Native girl had the right to seek traditional therapies for her acute lymphoblastic leukemia. The girl "JJ" had started chemotherapy in August but had been removed from treatment by her mother ten days into the treatment. The health care team had approached the Brant Children's Aid Society to intervene on behalf of the child. They argued that removing the child from treatment (a treatment that is 90% successful in treating this otherwise fatal illness) constituted medical neglect and that therefore, the child was in need of protection. Brant CAS investigated and declined to intervene on the grounds that the child was part of a loving family trying to do the best they could for their child. The child was not, therefore, in need of protection. Many organizations would leave things there, it is after all the CAS mandate to promote the best interests of children, and hospitals frequently defer to their authority. But McMaster Children's Hospital took the CAS to court. Good for them in pursuing what they thought was right.

The obligation to protect

So let's unpack the story – what is going on here? We, the broader community, Canadian society have a moral obligation to protect the most vulnerable members of our community. We have to be prepared to step in to prevent abuse and neglect, and for children we have an entire system of child welfare authorities. In many respects this is uncontroversial, there is a legislated obligation on professionals and those with authority to report to Children's Aid Societies suspected cases of abuse or neglect. There is a moral obligation on anyone to do the same thing. While we generally respect parental authority over most aspects of a child's life there are some things parents cannot do – and some things they must do. So, to use obvious examples, one cannot beat one's child, nor can one fail to feed him or her. It is important to note that intention or beliefs are irrelevant here. The parent may genuinely believe that it is in the child's best interest to be beaten with a stick, that belief may have a religious foundation (spare the rod and spoil the child – a phrase coined from Proverbs 13 v 24.) or not, it does not matter, one cannot beat one's child. (Section 43 of the Criminal Code notwithstanding.) Similarly, on the positive side, one cannot fail to feed or otherwise fail to provide the necessaries of life for one's child. (Criminal Code 215. (1))

Medical neglect and substitute decision-making for children

In health care the issue of "neglect" arises around seeking and accepting standard health care for children. The Health Care Consent Act (Ontario 1996) dictates that there is no treatment without consent (with minor exceptions not relevant to this discussion.) If the person concerned (the patient) is "incapable" of consenting to the treatment then a substitute decision-maker needs to consent for the treatment to proceed. (In Ontario there is no "age of consent" to health care treatments. If the patient can understand and appreciate the decision he or she is required to make then that person is "capable" of consenting (or refusing) him or her self. It is the responsibility of the health care provider proposing the treatment to determine if the patient is "capable" of consenting. In practice, children under the age of about 12 are frequently assumed not to be capable of consenting to treatment (unless they show evidence that they are) and young people over the age of 16 are generally assumed to be capable of consenting – unless they show evidence that they are not. Children 12-15 need to be evaluated on a case –by-case basis having regard to the nature of the treatment being proposed and the person's ability to understand and appreciate the decision.

 

So what happens if a substitute decision-maker refuses a treatment that the health care team believes is necessary for the well-being of the child? The obligation is on the health care team to notify Children's Aid. (This is exactly what occurred in the case of JJ.) In many cases Children's Aid would then step in and, if the treatment was deemed to be in the best interests of the child would consent to the treatment. This has occurred on several occasions concerning children of Jehovah's Witness parents who needed blood transfusions. The reasoning is that refusal of simple life-sustaining treatment would constitute medical neglect and parents are not permitted to medically neglect their children to death. And this is so whatever the parents' reasons for doing so – religious, cultural, idiosyncratic or whatever.

 

There are, of course, devils lurking in the details. One perennial issue concerns the capacity of the child to make the decision. Even a young child who has gone through repeated episodes of onerous treatment may be the very best person to decide about continuing care, and conversely an older child brought up to be highly dependent on parental views and opinions, may not. Each case really must be carefully evaluated on its merits, with appropriate humility about such fuzzy concepts as "capacity" "understanding" and "appreciation" and indeed" best interests." And indeed it is within the concept "best-interests" that another devil lurks.

 

A child's best interests

When a substitute decision-maker makes a decision on behalf of a child (and this applies to a child's parents too) the decision must be in the child's best interests. This is importantly different from the situation for a substitute decision-maker making a decision on behalf of an adult who was previously capable but is now incapable. For a previously capable adult the obligation for the substitute decision-maker is to follow the previously expressed wishes of the patient. For adults who had previously been capable the concept of "best interests" only applies if there are no previously expressed wishes that might be relevant to the situation at hand. Even in this case the concept of "best interests" is framed in the context of the patient's lived values and way of life. This means that any person's best interests is intrinsically and essentially tied to that individual. This notion of best interests can be thought of as subjective – dependent on the particularities of the person concerned. That is, there is no external, objective, measure of "best interests" that can be applied to all persons. But, of course, we are dealing with the best interests of children, children who have never been in a position to develop their own values and to choose their own way of life. The substitute decision-maker must therefore stand on the outside and try, as objectively as possible, to assess that child's lived experience, now and into the future. This is excruciatingly difficult, especially when the parents disagree with the health care team, and particularly when overriding the parent's decision may have the effect of requiring that child to come out of his or her community. Go back to the example of a blood transfusion for a child of Jehovah's Witness parents. If the parents refuse a needed blood transfusion (on the grounds that a transfusion would cause irreparable harm to the child's immortal soul) and child welfare authorities step in to authorize the treatment, that could have the effect of removing the child from his or her family and community. The result could be ostracism and estrangement. Certainly that child's life would be saved and extended, but at great cost. So far we have been using the example of blood transfusion – which is a simple procedure with potentially life-saving benefits and no appreciable side effects. What about treatments that carry terrible side effects, or which do not restore the child to full health, or which require other life-long interventions? The assessment of a child's best interests can be brutally difficult and can impose a grave moral burden on all involved, but not attempting to assess the child's best interests in these sorts of situations is not an option either. If those around a child throw up their hands and say – "We cannot know what it is to live life as another person – we cannot get inside another's feeling s to know what life is or would be like – we just cannot tell." Then that too is making a decision—a decision to continue the status quo, whatever that might be.

Back to JJ's story. When she was taken out of chemotherapy Brant Children's Aid was notified. They apparently did an investigation and determined that the child was not in need of protection. That is they were not prepared to step in and override the decision of the parents and authorize treatment. Their reasoning has not been made public. But if child welfare authorities are charged with protecting the interests of children their decision at some level must have been that it was not clearly in JJ's best interests to have continued treatment. It would be very interesting to know Brant CAS's thought process here but that will have to remain confidential.

McMaster Children's Hospital believed that the Brant CAS had failed in its obligation to protect JJ and so took the CAS to Court to attempt to force it to intervene.

Aboriginal rights and traditional healing

Justice Edward ruled that Section 35 of the Constitution Act of 1982 gave JJ's parents a constitutionally protected right to seek traditional healing. Section 35 says: "The existing aboriginal and treaty rights of the aboriginal peoples of Canada are hereby recognized and affirmed." This section of the Act has been subject to a great deal of interpretation. Justice Edward ruled that the native healing practices were an integral part of native culture and had existed before European contact. Those practices were therefore constitutionally protected and JJ's parents were entitled to pursue those practices on JJ's behalf.

" It is this court's conclusion, therefore that DH's decision (JJ's mother) to pursue traditional medicine for her daughter , J.J. is her aboriginal right. Further, such a right cannot be qualified as a right only if it is proven to work by employing the Western medical paradigm. To do so would be to leave open the opportunity to perpetually erode aboriginal rights." (Quoted in Globe and Mail Nov 15^th page A20)

The significance of this judgment

This judgment is highly significant for a number of reasons. The first is that it will most likely have the result of condemning JJ to death. DH can, of course, still seek Western medical treatment for JJ, but delay makes that treatment less likely to be effective. By the time that treatment is sought – if it is, it may simply be too late. Second, an aboriginal right to pursue traditional treatments is a precedent setting interpretation of aboriginal rights. Third, this right to seek traditional treatment cannot be limited by evidence. Fourth, this decision was made not on the basis of the child's best interests, but rather on the basis of a right of the parents.

Native traditional medicine and the Western medical paradigm

Let's look at three and four. Western medicine – in its foundation and at its best, is evidence based. And the "evidence" we are talking about is the evidence generated by science. Western scientific method is concerned with identifying the causal relationships between events in the natural world. Science is our method of saying true things about the natural world. Of course there are limitations. In health care the scientific method stands accused of atomizing persons – turning complex interrelated biological and mental entities into a series of diseases and disease processes. And there are other ways of saying true things about the world than just science. However, science and Western medicine has been stunningly effective in treating and indeed eradicating many diseases. Before European contact little JJ, as a young native girl with her disease, would have died. In fact, just fifty years ago JJ anywhere would have died. It is a triumph of science and Western medicine that she does not need to die today. Judge Edward's point – in general, is that rights are not subject to reason. This is as it should be. If I have a right I can exercise that right as an entitlement, not subject to your evaluation of my reasons or my good sense. In health care, if I am capable of making my own decisions, I am entitled (I have a right) to refuse treatments. That right is not subject to me having good reasons for exercising the right. I'm just entitled. Similarly in this case. JJ's parents are entitled to exercise their aboriginal right to pursue traditional remedies. The fact that there is no evidence to believe that those remedies will work for JJ is irrelevant. They are just entitled.

I think there is more going on here too. We are talking not just about rights in general but an aboriginal right to pursue "traditional medicine." Traditional medicine is here being held up as equivalent to the "Western medical paradigm." They are being treated as equivalent methods of doing the same thing. The Western medical paradigm, indeed Western science is a world view, a way of conceptualizing the natural world around us, and a way of problem solving in that world. There are other ways of seeing the world and other approaches to problem solving. We could consult oracles, or cast lots, or look to the stars or spirits for guidance. Maybe it is a failure of my own imagination or maybe I'm just too embedded in the scientific paradigm, or perhaps I am seduced by the success of that model, but I cannot comprehend how an alternative model that operates without evidence – or indeed contrary to evidence can make sense as an intelligible problem solving method. (Of course there is much, much more that could be said here. Not all problems are scientific problems – "What should I do?" is a moral question whose answer will not be found by applying a scientific method. And, yes, I am partly begging the question in the way I use "evidence." And certainly, to the extent that science predisposes us to "use" or exploit the world around us rather than embedding us as part of our environment, science is problematic, but science works – and it self-corrects.) I worry that when "alternative" models are presented as exactly that – alternatives – that can be substituted for something thought to be equivalent we are merrily marching on the road to unreason and incoherence.

Parental rights and a child's best interests

JJ's parents' aboriginal right to pursue traditional healing methods trumps JJ's right to have her best interests considered. The question of whether JJ would be better off pursuing traditional healing methods or undergoing chemotherapy does not arise, as her parents are just entitled to make the choice for her. Of course, they want the best for her, and they may well genuinely believe that their actions are in her best interests, but as Justice Edward pointed out they do not need to consider the "evidence," of the natural and almost always fatal course of the disease or the success of treatment, produced by the Western medical paradigm. Her best interests are whatever her parents' say they are. This is contrary to our practice for every other child in every other non-native community in Canada.

The legacy of colonialism and residential schools

Is JJ paying the price for the legacy of colonialism, for the sins of residential schools? Canada has a sorry and tragic history of removing native children from their communities, thus destroying lives, families, communities and ways of life. Maybe, somewhere at the bottom of that awful practice was the belief that somehow those children would be better off stripped of their families, their languages and their cultural heritage and educated or re-educated to participate in the modern world. Even if there were good intentions somewhere buried in the background the execution and the effects have been tragic. Because we must not, cannot, repeat the sins of the past we are perhaps doomed to sacrifice children like JJ. We have been so horribly wrong in our evaluation of children's best interests in our treatment of native children we must now show respect by refraining from stepping in to impose our view. And that is so even if JJ would be better off with chemotherapy.

One final word. By the time things get to the courts the game is lost. Courts are adversarial, there are winners and losers. JJ needed her treatment team and her parents and her community to work together to support her through a harrowing treatment regime to the hoped for outcome of a rich, long and vibrant life. Things seemed to have started off like that, but then the train went off the rails. And that is part of the tragedy too. We have to do a better job of building trusting and effective relationships between all patients and their families and their treatment teams, as we work towards genuinely shared goals.

Public Opinion and medical aid in dying

Canadian public opinion and medical aid in dying

 

The group Dying With Dignity has just released the results of a fairly comprehensive poll conducted by Ipsos Reid in August of 2014. http://www.dyingwithdignity.ca/database/files/library/DWD_IpsosReid2014.pdf

The results are quite dramatic. There is overwhelming support for medical aid in dying. 84% of people polled agree with the statement: "A doctor should be able to help someone end their life if the person is a competent adult who is terminally ill, suffering unbearably and repeatedly asks for assistance to die."

Most Canadians generally agree with the concept of assisted dying, regardless of how it is

specifically defined. Nine in ten (91%) agree that a person should not be forced to endure

drawn out suffering, and a similar proportion (91%) agree that palliative care is not

enough.

Support for the right to die is highest when speaking about patients who have a "terminal

illness that results in unbearable suffering" (88%) or a "serious incurable illness or

condition, with an advanced state of weakened capacity that is permanent, incurable, and

results in unbearable suffering" (86%)

http://www.dyingwithdignity.ca/database/files/library/DWD_IpsosReid2014.pdf Page 6.

The survey also found that only 42% of respondents thought that the majority of other Canadians were in favour of medical aid in dying.

So, what difference does this make? Obviously that many people think something should be either morally or legally permitted does not mean that it should. On the moral or ethical side we still need to work through the arguments and the reasons for whatever position, each one of us as individuals might take. (See the blog posts "Understanding the issues in end of life care" and "Slippery Slopes" below.) On the legal front, it may be that the Supreme Court as it hears the Carter case may take public opinion into account. On the political side this poll could show that the perceived political downside of legalising some form of medical aid in dying may not be as severe as anticipated. But, if there is a move to change the law the details will be critical. This discussion, of course, is far from over.

Understanding the issues in end of life care (Revised)

Understanding the issues in end-of-life care.

There is a great deal of current discussion of end-of-life care, standards are evolving, there is new legislation pending in Quebec, a Private Member's Bill before the House of Commons and a Supreme Court reference. The Canadian Medical Association has conducted town-hall debates and the College of Family Physicians is considering its response. The CMA has updated its position paper on Euthanasia and Assisted Suicide. (http://policybase.cma.ca/dbtw-wpd/Policypdf/PD14-06.pdf) On the 25th August 2014 Gillian Bennett an 83 year old woman from BC committed suicide rather than slip further into helplessness and dementia. (This is a link to her blog "Dead at Noon." http://www.deadatnoon.com/) Yet despite all of this there is still a great deal of confusion about the topic, or more properly, topics. And all the time we ask confused questions we doom ourselves to confused answers.

Let's try to lay the groundwork. First, I will not use the word "euthanasia." (At least not until later in this piece.) Many people view the term as carrying a negative moral connotation. That is, many people believe that if an act is an act of euthanasia then that act is morally (or ethically) wrong. This just shifts the debate into a puzzle or argument about definitions and terminology – does such and such an act fall within the definition of euthanasia? The more interesting, and more direct questions concern the moral status of the act itself – should this act be permitted, why or why not? Second, this debate crops up in health-care and in broader social discussion under a number of different headings: end-of-life care, palliative care, advance directives, physician assisted suicide, physician assisted death, active and passive euthanasia, Do Not Resuscitate, (DNR) No Cardiopulmonary Resuscitation (No CPR), Allow Natural Death (AND) and so on. There are important conceptual, ethical and practical distinctions to be made between all of these terms, however, any of them can lead us into the broader discussion – and many of them could be the policy name for the process that governs practice within a particular health care organization. Any of them, including those that are relatively non-controversial or agreed-upon could be our gateway into a broader and more contested debate.

The current state of practice

Palliative Care P

Palliative care is defined by the World health organization (WHO) as follows: "Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual." Palliative care thus represents a way of seeing care, a philosophy of care that is not explicitly or necessarily about the end of a person's life. Sometimes palliative care practitioners describe themselves as focussing on care rather than cure, on quality rather than quantity, and on the whole person rather than a disease process. In practice, a palliative care practitioner or team often gets called in far too late, for end-of-life care, when the patient is expected to die imminently, or when the patient is actively dying. "palliative care beds" in hospitals are often reserved for patients who are actively dying. This fosters a host of confusions. Sometimes people (and this can include both patients and practitioners) equate palliative care with end-of-life care, and resist it accordingly. This is unfortunate. Palliative care practitioners will normally argue strenuously that no patient needs ever to die in pain. That is, good palliative care can relieve pain and suffering at the end of a person's life. The CMA consultation had as its primary conclusions that palliative care should be promoted and expanded and that access to palliative care should be far more readily available. Both these conclusions are uncontroversial. It is generally accepted that the process of providing adequate medication to relieve pain and suffering may have the anticipated but unintended consequence of shortening life. That is, it could turn out that if the patient continued in pain he or she would live longer than would be the case if that pain were properly controlled. It is accepted that providing good pain control in these circumstances is good medical practice and completely ethically justified. This concept of "anticipated but unintended" consequences is connected to the Catholic doctrine of "double effect."

Palliative sedation refers to situations where the patient is sedated to unconsciousness to relieve physical or psychic pain until the patient dies.

Refusals of treatment

There are slight variations by jurisdiction across the country. In general, however, it is accepted that a "capable" patient (That is, a patient who meets the criteria for capacity to consent to health care interventions.) is entitled to refuse treatments. This entitlement to refuse treatments extends to any treatment, including life saving treatments, and treatments that have already started. Patients frequently refuse potentially life-saving interventions, such as CPR, or intubation, or nutrition through feeding tubes. Patients' reasons are various, some are religious, for example a Jehovah's Witness' refusal of a blood transfusion, but others are grounded in quality of life considerations. Ultimately though, the reasons for a patient's refusal of care are irrelevant, if the patient is capable of consenting to treatment, he or she is entitled to refuse that treatment, on whatever grounds he or she wishes. In end-of-life situations such refusals of treatment may have the effect of shortening the patient's life. The key ethical idea is a type of autonomy.

Autonomy in this case comes in the form of "security of the person" in that my body is my own and no-one can interfere with it without my consent. Autonomy here is a negative freedom – a "freedom from," rather than a "freedom to." Confusion abounds here too. The requirement that a patient must consent to a treatment in order for the treatment to be instituted (with the exception of emergency interventions) gives rise to the "right" to refuse treatments, not a right to "choose" treatments – or better only to a right to choose treatments from amongst the treatments that have been offered by the appropriate health care provider. It is important to note that the patient has the authority to refuse treatments. This can lead to some confusion in practice. Some organizations require a physician to write a DNR order (DNR Do Not Resuscitate, sometimes DNAR, Do Not Attempt Resuscitation) to somehow authorize the patient's refusal of treatment. This does not make sense. The patient's refusal of treatment needs to be recorded and honoured, but it needs no authority other than the patient's. (This is recognised by nursing codes of practice which expect nurses to record and respect a capable patient's refusal of treatment, including a refusal of a resuscitation attempt.) In contrast, a DNR order may well be part of the appropriate notation if the physician has decided that resuscitation will not be offered as part of the care plan on the grounds that a resuscitation attempt would be futile or otherwise inappropriate. Current practice would expect that the physician or care team would gain consent to such a care plan before writing an order that includes DNR. This issue remains contested, it seems very odd to require a physician to seek consent to not do something (attempt resuscitation) that the physician in his or her best clinical judgment believes would be futile. This is the only situation I am aware of where consent is required to not do something useless. However, this is pretty much the standard practice. The same basic concept – that I am entitled to say what happens to me means that I could refuse not just treatment but other forms of care – including feeding. There are recent examples of patients who were clearly capable of making their own decisions who had terminal illnesses but who were not imminently dying who chose to forego food in order to end a life that, for the person concerned, was an unbearable burden.

Withdrawals of Treatment

A capable patient can refuse treatments – even after the treatment has started. This means that a patient can authorise the cessation or withdrawal of a treatment, including a life-sustaining treatment. This may mean that a health care practitioner is required to perform an action (such as disconnecting a ventilator) this can certainly result in moral burdens of care for care providers as in these cases they may well be performing an act that leads as a direct consequence to a person's death. A physician can also determine that a treatment that has been initiated is now no longer indicated. That is, the treatment could be viewed as a "trial of therapy" where the anticipated or hoped-for outcomes have not materialised. It is within the physician's scope of practice and authority to withdraw such treatments. The consent of the patient is not generally required because the physician has determined that the treatment is no longer indicated. In practice many physicians would seek consent to withdrawing a treatment in very many situations. But note the anomalous situations that this practice can give rise to. If patient consent was not forthcoming the physician or care team would be compelled to provide treatment they believed to either be pointless or positively harmful. (In Ontario there is a potential remedy to such situations through the Health Care Consent Act and the Consent and Capacity Board.) The Supreme Court of Canada in the Rasouli case determined that patients (or their substitute decision-makers) are required to consent to withdrawals of life sustaining treatments. This gives rise to the situation where care providers, if patient consent is not forthcoming, are required to continue to provide life-sustaining treatment even if the care providers believe that such care is inappropriate or futile in that there is no hope for a meaningful recovery. The Court was careful to try to limit this judgment to withdrawals of life-sustaining treatment only, and not more broadly to withdrawals of other treatments or to patient demands for treatments that physicians and care teams had not offered. (This decision applies in Ontario because it turns on an interpretation of Ontario's Health Care Consent Act.)

Advance directives and substitute decision-making

The legislation varies across the country, but generally, whatever I can do while capable (refuse a treatment for example) I can do either through some form of written advance directive or through a substitute decision-maker. So, if under certain circumstances I would not wish to be resuscitated, or ventilated, or indeed have my pneumonia treated I can write an advance directive, or instruct my substitute decision-maker (In Ontario "power of attorney for personal care") and those directives should be followed. There are certainly limits here. It is not clear if my advance directive that stated I should not be fed would be honoured by my care team. (I could certainly refuse the insertion of a feeding tube through an advance directive or power of attorney, but it is far less clear if a refusal of standard feeding would be honoured.)

Futile and Inappropriate

A treatment is "physiologically futile" if it cannot bring about the effect for which it is intended. A futile treatment is inappropriate, but there are other ways in which a treatment may be inappropriate – cost, minimal benefit, and low probability of success being the obvious candidates. But, of course, what counts as too costly, or insufficient benefit and so on are all contested concepts. Physicians are certainly not obliged to offer treatments that they believe to be physiologically futile. (With the possible exception of a resuscitation attempt – see above.) The question of physiological futility falls within the physicians' scope of practice, expert judgment and authority. I would argue that physicians are obliged not to offer treatments they believe are futile. "Inappropriate" treatments are another category altogether. It is far less clear that physicians have the unambiguous authority to determine the inappropriateness or otherwise of a treatment. All of the above is acknowledged in the preamble to the CMA position paper on Euthanasia and Assisted Suicide: Euthanasia and assisted suicide, as understood here, must be distinguished from the withholding or withdrawal of inappropriate, futile or unwanted medical treatment or the provision of compassionate palliative care, even when these practices shorten life. The CMA does not support euthanasia or assisted suicide. It urges its members to uphold the principles of palliative care.

So, if that is the current state of practice, what changes are we looking at? Let's use the CMA position paper as a launching point. The position paper on Euthanasia and Assisted Suicide offers some definitions. We will look at them, not because they are good, but because they are out there and illustrate some of the confusions.

CMA definitions

Medical aid in dying refers to a situation whereby a physician intentionally participates in the death of a patient by directly administering the substance themselves, or by providing the means whereby a patient can self-administer a substance leading to their death.

Problems with this definition

It masks distinction between physician assisted suicide (where the patient performs the act of killing) and physician assisted death where the physician performs the act. Many people take this distinction to be ethically significant. The phrase, however, is useful because it identifies the territory under discussion without the baggage of the term "euthanasia." We will still have to decide exactly what acts are under discussion, is it physician assisted suicide or physician assisted death? Should both, or either be permitted?

Physician assisted death means that a physician knowingly and intentionally provides a person with the knowledge or means or both required to end their own lives, including counseling about lethal doses of drugs, prescribing such lethal doses or supplying the drugs. This is sometimes referred to as physician assisted suicide.

Problems with this definition

This is more commonly called physician assisted suicide, and the definition presented would have been fine as a definition of physician assisted suicide. The Quebec legislation uses the phrase "physician assisted death" to describe the practice, permitted under their new legislation, where the physician intentionally administers a lethal dose of medication – as part of palliative care.

Euthanasia means knowingly and intentionally performing an act, with or without consent, that is explicitly intended to end another person's life and that includes the following elements: the subject has an incurable illness; the agent knows about the person's condition; commits the act with the primary intention of ending the life of that person; and the act is undertaken with empathy and compassion and without personal gain.

Problems with the definition

The consent issue is crucial, the ethical evaluation of the act concerned may well turn on the matter of consent. So, this definition runs together practices that many would consider unethical with practices that many would not. This does not help the debate. It is also odd to include "empathy, compassion" etc. Of, course, these things are good but they are not part of a definition of "euthanasia."

 

The standard philosophical analysis of "euthanasia" has a variety of categories, active and passive, voluntary, non-voluntary, and involuntary.

Categories of "Euthanasia"

	Active An action is performed with the intention of ending a life	Passive A potentially life-extending or saving action is not taken
Voluntary At the capable patient's request or With the capable patient's consent	Not currently practiced in Canada Would be permitted under Quebec legislation Practiced in Canada	DNR (patient request or consent) Patient refusals of treatment Patient refusals of life support Patient refusals of feeding
Non-voluntary Patient is not capable of consent *	Unclear if this would be permitted under Quebec legislation or under other proposals to change Canadian law.	Practiced In Canada Refusals of resuscitation, treatment, life support, but probably not refusals of feeding, authorized by an advance directive, power of attorney for personal care, or substitute decision-maker
Involuntary Against the patient's wishes	Murder	Contested: Medical DNR against patient request or without consent Withdrawal of life-sustaining treatment without consent, forbidden in Ontario (Supreme Court of Canada, Rasouli decision)

 

 

 

 

* There are important distinctions embedded in the phrase "not capable of consent." I may not be capable of consenting, or making my wishes known now but I may have been capable of making my wishes known in the past. Current legislation, which varies across Canada, permits me to make determinations now – either through an Advance Directive, or through instructions to my Power of Attorney for Personal Care, or substitute decision-maker, about the care I would not wish to receive at some time in the future. See the box Non-voluntary, passive. It is not clear, though highly important, whether under proposed changes to legislation I would, while capable, be able to request active euthanasia to take place at some later time when I was not capable. (Non-voluntary active.) This is the issue raised by Gillian Bennett in Dead at Noon.

But there is also a category of patient who has never been capable of making his or her own medical decisions. This would include infants or young children or adults who have never been capable. Under current health care legislation these patients would have some form of substitute decision-maker make treatment decisions on that person's behalf. If active euthanasia were legalized should substitute decision-makers (or anyone else for that matter be permitted to request or consent to euthanasia for a person who had never been capable of making his or her own decisions?

"Euthanasia" has become such a value-laden term it has become very difficult to get past the word to look critically at the actual practices we are concerned about. The CMA simply rejects the entire category of "passive" euthanasia as euthanasia.

Euthanasia and assisted suicide, as understood here, must be distinguished from the withholding or withdrawal of inappropriate, futile or unwanted medical treatment or the provision of compassionate palliative care, even when these practices shorten life. The CMA does not support euthanasia or assisted suicide. It urges its members to uphold the principles of palliative care.

So, let's leave the word and focus on the deeds, and over to you: Should physician assisted suicide be legalised in Canada? Should physician assisted death be legalised? What should the limits be? Terminal illness? Intractable physical (psychic pain)? Voluntary (at the request of the capable patient) Can this request come in advance (an advance directive?)

There is very recent polling data available on this topic – and an analysis of that data will be the subject of a subsequent post.

http://www.dyingwithdignity.ca/database/files/library/DWD_IpsosReid2014.pdf

 

Slippery Slopes

Slippery Slopes

In the last paragraphs of the CMA's position paper on Euthanasia and Assisted Suicide (http://policybase.cma.ca/dbtw-wpd/Policypdf/PD14-06.pdf ) (Updated in 2014) the authors warn that if euthanasia or assisted suicide were permitted in Canada what could follow would be a "slippery slope…" That is, if you permit capable adults the right to some form of medical assistance in dying then the next step would lead you tumbling down a precipice (the slippery slope) to leave you helpless in a place you really do not want to be.

Slippery slope arguments work by suggesting that if you permit, or accept "this" (for instance euthanasia or medical aid in dying for capable, terminally ill-adults) then inevitably, by a series of small and perhaps seemingly innocuous steps, you will end up somewhere everyone would accept is very bad. The conclusion is therefore not to permit "this" in the first place. Slippery slope arguments are not always fallacious, but they do always rely on a chain of either causal, or conceptual reasoning connecting the dots between the "this" which might be acceptable and the "that" which manifestly is not. So, in the debate about euthanasia, or medical aid in dying it will be very important to look carefully at the possible defences against the slippery slope. Can we, should we, build fences and guardrails?

But before we look at fences, let's look at the slope (or rather slopes) instead, let's examine the territory that is so slippery. I think, that in this debate there are two quite different slopes, and two quite different forces at play to push us onto those slopes. This is because there are two quite different sets of arguments that get presented to support changing the law to permit some sort of physician aid in dying.

The argument from "autonomy"

The first is a straightforward argument from personal autonomy or freedom or independence. I ought to be as free as possible to live my life, as far as possible, as I wish to live it. The basic limitation on this personal freedom is that I cannot be free to perform acts that harm others. (This goes back to Bentham and Mill, and, of course there is much more we could say about this.) A version of autonomy is a prevalent principle in health care. The doctrine of "consent" to treatment is founded on the idea that I should not have things done to me (for instance, medical treatment) without my agreement. The Ontario Health Care Consent Act (1996) describes itself as an act to promote autonomy. (You can probably see there are two versions of "autonomy" or "freedom" being used here – one is positive, a "freedom to" do something, the other is negative, a "freedom from" something. These two senses are too often confused in health care. I am certainly entitled to refuse treatments – I can withhold my consent and exercise my "freedom from," but I do not have a corresponding right to demand a treatment, a "freedom to…")

In the end of life debate, the concept of autonomy (freedom from) gives rise to patient refusals of treatment, or resuscitation, or feeding, and the patient-prompted removals of treatments that have already been started, such as ventilator support, pacemakers, dialysis and so on. In each of these cases it is recognized that these decisions are within the authority of a capable patient, and even if those refusals of treatment result in death occurring earlier than it otherwise would – those refusals must be honoured. This is accepted as legal, respectful of persons, and good medical practice. (The CMA position paper on Euthanasia and Assisted Suicide makes exactly this point in its preamble.)

The autonomy argument for euthanasia or medical aid in dying goes on to say I ought to be able to make the decisions in my life that most affect me. That must include the time and means of my death if I so choose, and it must include the ability to enlist assistance if I can find a willing participant. Hence, if we are to be respectful of persons and individual autonomy we should permit people to seek and accept medical aid in dying. (You could think of this as the "boomer" argument – around my dinner table amongst my middle-aged, wine-drinking friends this is the position you would hear most commonly articulated.)

The slippery slope for the boomer (autonomy) argument.

If euthanasia or medical aid in dying is permitted on the grounds of autonomy for capable patients with incurable illness and intractable pain it is easy to see where the next steps will come. Refusals of treatment grounded in a patient's autonomy are already permitted for a non-capable patient through advance directives (written or given when the patient was capable) or through the decisions of a substitute decision-maker (again authorized when the patient was capable.) What argument could there be for not extending the same right to medical aid in dying? If medical aid in dying is permitted why cannot I authorize that assistance now, while I am capable, to take effect at some time in the future when pre-specified conditions are met and when I am no longer capable? This would be morally no different and would have no different effect from an advance directive that stated that I should not be resuscitated or intubated under a specified set of conditions, and that is standard practice and relatively uncontroversial now.

The other shove down the slope from the autonomy argument concerns the conditions I must meet in order to qualify for medical aid in dying. Most such legislation would include language concerning terminal illness, incurable disease and intractable pain. But who gets to define what counts as my pain? And all life is terminal. If I am free to make the decisions that most affect me then I must be free to define the conditions under which I take my life to be worth living. And if medical aid in dying is available, on the grounds of autonomy, to anyone how can it be denied to me if that is what I want?

The relief of suffering argument

The second argument for permitting euthanasia or medical aid in dying is that it is sometimes the only viable way of relieving intractable pain or suffering. We would not leave an animal to suffer in this way – we would "put it out of its misery" how can we deny that same boon to our fellow suffering humans? It is cruel to leave people to suffer and if the only way of relieving that suffering is to end that person's life then we have a moral duty to do so. This argument puts medical aid in dying as part of the range of options that should be available to the palliative care specialist. It should, of course, be pointed out that one of the basic premises for this argument (that the only way of relieving suffering is to kill the patient is highly contested. Many palliative care specialists would argue that it is never necessary for a patient to suffer while dying. However, this is, in effect, the approach of Bill 56 in Quebec, which makes medical aid in dying part of the toolkit for palliative care.) The basic position, however, does have a great deal of emotional and persuasive power. It is cruel to leave a person to suffer.

The slippery slope for the relief of suffering argument

Proposals for permitting euthanasia or medical aid in dying usually contain a range of conditions – terminal illness, intractable suffering and capable patient for example. The push down the slippery slope that comes from the relief of suffering argument concerns "capacity." If it is cruel to let a human being suffer it is cruel to let that person suffer regardless of his her capacity and regardless of whether that person has ever been capable of making any form of decision for him or herself. This is precisely the position articulated by Robert Latimer in his defence against the charge of murdering his daughter Tracy and it is precisely the argument presented by the Dutch authors of the "Groningen protocol" which lays out the conditions under which they believe it is acceptable to euthanize an infant.

In Conclusion

In the debate on euthanasia and medical aid in dying fears of a "slippery slope" are often used as a form of argument against permitting any liberalization of the law. To assess the effectiveness of those arguments it helps to understand the nature of the slippery slopes we should be worried about. And, understanding those slopes may give us a better chance of building the fences we might need.

Understanding post... The previous post lost a chart I had in the text -- so the later portion is garbled. I will try to fix that and repost in a more coherent form...

Understanding the "end-of-life" debate

Understanding the issues in end-of-life care. There is a great deal of current discussion of end-of-life care, standards are evolving, there is new legislation pending in Quebec, a Private Member’s Bill before the House of Commons and a Supreme Court reference. The Canadian Medical Association has conducted town-hall debates and the College of Family Physicians is considering its response. The CMA has updated its position paper on Euthanasia and Assisted Suicide. (http://policybase.cma.ca/dbtw-wpd/Policypdf/PD14-06.pdf) On the 25th August 2014 Gillian Bennett an 83 year old woman from BC committed suicide rather than slip further into helplessness and dementia. (This is a link to her blog “Dead at Noon.” http://www.deadatnoon.com/) Yet despite all of this there is still a great deal of confusion about the topic, or more properly, topics. And all the time we ask confused questions we doom ourselves to confused answers. Let’s try to lay the groundwork. First, I will not use the word “euthanasia.” Many people view the term as carrying a negative moral connotation. That is, many people believe that if an act is an act of euthanasia then that act is morally (or ethically) wrong. This just shifts the debate into a puzzle or argument about definitions and terminology – does such and such an act fall within the definition of euthanasia? The more interesting, and more direct questions concern the moral status of the act itself – should this act be permitted, why or why not? Second, this debate crops up in health-care and in broader social discussion under a number of different headings: end-of-life care, palliative care, advance directives, physician assisted suicide, physician assisted death, active and passive euthanasia, Do Not Resuscitate, (DNR) No Cardiopulmonary Resuscitation (No CPR), Allow Natural Death (AND) and so on. There are important conceptual, ethical and practical distinctions to be made between all of these terms, however, any of them can lead us into the broader discussion – and many of them could be the policy name for the process that governs practice within a particular health care organization. Any of them, including those that are relatively non-controversial or agreed-upon could be our gateway into a broader and more contested debate. The current state of practice Palliative Care Palliative care is defined by the World health organization (WHO) as follows: “Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.” Palliative care thus represents a way of seeing care, a philosophy of care that is not explicitly or necessarily about the end of a person’s life. Sometimes palliative care practitioners describe themselves as focussing on care rather than cure, on quality rather than quantity, and on the whole person rather than a disease process. In practice, a palliative care practitioner or team often gets called in far too late, for end-of-life care, when the patient is expected to die imminently, or when the patient is actively dying. “palliative care beds” in hospitals are often reserved for patients who are actively dying. This fosters a host of confusions. Sometimes people (and this can include both patients and practitioners) equate palliative care with end-of-life care, and resist it accordingly. This is unfortunate. Palliative care practitioners will normally argue strenuously that no patient needs ever to die in pain. That is, good palliative care can relieve pain and suffering at the end of a person’s life. The CMA consultation had as its primary conclusions that palliative care should be promoted and expanded and that access to palliative care should be far more readily available. Both these conclusions are uncontroversial. It is generally accepted that the process of providing adequate medication to relieve pain and suffering may have the anticipated but unintended consequence of shortening life. That is, it could turn out that if the patient continued in pain he or she would live longer than would be the case if that pain were properly controlled. It is accepted that providing good pain control in these circumstances is good medical practice and completely ethically justified. This concept of “anticipated but unintended” consequences is connected to the Catholic doctrine of “double effect.” Palliative sedation refers to situations where the patient is sedated to unconsciousness to relieve physical or psychic pain until the patient dies. Refusals of treatment There are slight variations by jurisdiction across the country. In general, however, it is accepted that a “capable” patient (That is, a patient who meets the criteria for capacity to consent to health care interventions.) is entitled to refuse treatments. This entitlement to refuse treatments extends to any treatment, including life saving treatments, and treatments that have already started. Patients frequently refuse potentially life-saving interventions, such as CPR, or intubation, or nutrition through feeding tubes. Patients’ reasons are various, some are religious, for example a Jehovah’s Witness’ refusal of a blood transfusion, but others are grounded in quality of life considerations. Ultimately though, the reasons for a patient’s refusal of care are irrelevant, if the patient is capable of consenting to treatment, he or she is entitled to refuse that treatment, on whatever grounds he or she wishes. In end-of-life situations such refusals of treatment may have the effect of shortening the patient’s life. The key ethical idea is a type of autonomy. Autonomy in this case comes in the form of “security of the person” in that my body is my own and no-one can interfere with it without my consent. Autonomy here is a negative freedom – a “freedom from,” rather than a “freedom to.” Confusion abounds here too. The requirement that a patient must consent to a treatment in order for the treatment to be instituted (with the exception of emergency interventions) gives rise to the “right” to refuse treatments, not a right to “choose” treatments – or better only to a right to choose treatments from amongst the treatments that have been offered by the appropriate health care provider. It is important to note that the patient has the authority to refuse treatments. This can lead to some confusion in practice. Some organizations require a physician to write a DNR order (DNR Do Not Resuscitate, sometimes DNAR, Do Not Attempt Resuscitation) to somehow authorize the patient’s refusal of treatment. This does not make sense. The patient’s refusal of treatment needs to be recorded and honoured, but it needs no authority other than the patient’s. (This is recognised by nursing codes of practice which expect nurses to record and respect a capable patient’s refusal of treatment, including a refusal of a resuscitation attempt.) In contrast, a DNR order may well be part of the appropriate notation if the physician has decided that resuscitation will not be offered as part of the care plan on the grounds that a resuscitation attempt would be futile or otherwise inappropriate. Current practice would expect that the physician or care team would gain consent to such a care plan before writing an order that includes DNR. This issue remains contested, it seems very odd to require a physician to seek consent to not do something (attempt resuscitation) that the physician in his or her best clinical judgment believes would be futile. This is the only situation I am aware of where consent is required to not do something useless. However, this is pretty much the standard practice. The same basic concept – that I am entitled to say what happens to me means that I could refuse not just treatment but other forms of care – including feeding. There are recent examples of patients who were clearly capable of making their own decisions who had terminal illnesses but who were not imminently dying who chose to forego food in order to end a life that, for the person concerned, was an unbearable burden. Withdrawals of Treatment A capable patient can refuse treatments – even after the treatment has started. This means that a patient can authorise the cessation or withdrawal of a treatment, including a life-sustaining treatment. This may mean that a health care practitioner is required to perform an action (such as disconnecting a ventilator) this can certainly result in moral burdens of care for care providers as in these cases they may well be performing an act that leads as a direct consequence to a person’s death. A physician can also determine that a treatment that has been initiated is now no longer indicated. That is, the treatment could be viewed as a “trial of therapy” where the anticipated or hoped-for outcomes have not materialised. It is within the physician’s scope of practice and authority to withdraw such treatments. The consent of the patient is not generally required because the physician has determined that the treatment is no longer indicated. In practice many physicians would seek consent to withdrawing a treatment in very many situations. But note the anomalous situations that this practice can give rise to. If patient consent was not forthcoming the physician or care team would be compelled to provide treatment they believed to either be pointless or positively harmful. (In Ontario there is a potential remedy to such situations through the Health Care Consent Act and the Consent and Capacity Board.) The Supreme Court of Canada in the Rasouli case determined that patients (or their substitute decision-makers) are required to consent to withdrawals of life sustaining treatments. This gives rise to the situation where care providers, if patient consent is not forthcoming, are required to continue to provide life-sustaining treatment even if the care providers believe that such care is inappropriate or futile in that there is no hope for a meaningful recovery. The Court was careful to try to limit this judgment to withdrawals of life-sustaining treatment only, and not more broadly to withdrawals of other treatments or to patient demands for treatments that physicians and care teams had not offered. (This decision applies in Ontario because it turns on an interpretation of Ontario’s Health Care Consent Act.) Advance directives and substitute decision-making The legislation varies across the country, but generally, whatever I can do while capable (refuse a treatment for example) I can do either through some form of written advance directive or through a substitute decision-maker. So, if under certain circumstances I would not wish to be resuscitated, or ventilated, or indeed have my pneumonia treated I can write an advance directive, or instruct my substitute decision-maker (In Ontario “power of attorney for personal care”) and those directives should be followed. Futile and Inappropriate A treatment is “physiologically futile” if it cannot bring about the effect for which it is intended. A futile treatment is inappropriate, but there are other ways in which a treatment may be inappropriate – cost, minimal benefit, and low probability of success being the obvious candidates. But, of course, what counts as too costly, or insufficient benefit and so on are all contested concepts. Physicians are certainly not obliged to offer treatments that they believe to be physiologically futile. (With the possible exception of a resuscitation attempt – see above.) The question of physiological futility falls within the physicians’ scope of practice, expert judgment and authority. I would argue that physicians are obliged not to offer treatments they believe are futile. “Inappropriate” treatments are another category altogether. It is far less clear that physicians have the unambiguous authority to determine the inappropriateness or otherwise of a treatment. All of the above is acknowledged in the preamble to the CMA position paper on Euthanasia and Assisted Suicide: Euthanasia and assisted suicide, as understood here, must be distinguished from the withholding or withdrawal of inappropriate, futile or unwanted medical treatment or the provision of compassionate palliative care, even when these practices shorten life. The CMA does not support euthanasia or assisted suicide. It urges its members to uphold the principles of palliative care. So, if that is the current state of practice, what changes are we looking at? Let’s use the CMA position paper as a launching point. The position paper on Euthanasia and Assisted Suicide offers some definitions. We will look at them, not because they are good, but because they are out there and illustrate some of the confusions. CMA definitions Medical aid in dying refers to a situation whereby a physician intentionally participates in the death of a patient by directly administering the substance themselves, or by providing the means whereby a patient can self-administer a substance leading to their death. Problems with this definition It masks distinction between physician assisted suicide (where the patient performs the act of killing) and physician assisted death where the physician performs the act. Many people take this distinction to be ethically significant. The phrase, however, is useful because it identifies the territory under discussion without the baggage of the term “euthanasia.” We will still have to decide exactly what acts are under discussion, is it physician assisted suicide or physician assisted death? Should both, or either be permitted? Physician assisted death means that a physician knowingly and intentionally provides a person with the knowledge or means or both required to end their own lives, including counseling about lethal doses of drugs, prescribing such lethal doses or supplying the drugs. This is sometimes referred to as physician assisted suicide. Problems with this definition This is more commonly called physician assisted suicide, and the definition presented would have been fine as a definition of physician assisted suicide. The Quebec legislation uses the phrase “physician assisted death” to describe the practice, permitted under their new legislation, where the physician intentionally administers a lethal dose of medication – as part of palliative care. Euthanasia means knowingly and intentionally performing an act, with or without consent, that is explicitly intended to end another person's life and that includes the following elements: the subject has an incurable illness; the agent knows about the person's condition; commits the act with the primary intention of ending the life of that person; and the act is undertaken with empathy and compassion and without personal gain. Problems with the definition The consent issue is crucial, the ethical evaluation of the act concerned may well turn on the matter of consent. So, this definition runs together practices that many would consider unethical with practices that many would not. This does not help the debate. It is also odd to include “empathy, compassion” etc. Of, course, these things are good but they are not part of a definition of “euthanasia.” The standard philosophical analysis of “euthanasia” has a variety of categories, active and passive, voluntary, non-voluntary, and involuntary. Categories of “Euthanasia” Active An action is performed with the intention of ending a life Passive A potentially life-extending or saving action is not taken Voluntary At the capable patient’s request or With the capable patient’s consent Not currently practiced in Canada Would be permitted under Quebec legislation Practiced in Canada DNR (patient request or consent) Patient refusals of treatment Patient refusals of life support Patient refusals of feeding Non-voluntary Patient is not capable of consent * Unclear if this would be permitted under Quebec legislation or under other proposals to change Canadian law. Practiced In Canada Refusals of resuscitation, treatment, life support, but probably not refusals of feeding, authorized by an advance directive, power of attorney for personal care, or substitute decision-maker Involuntary Against the patient’s wishes Murder Contested Medical DNR against patient request or without consent Withdrawal of life-sustaining treatment without consent, forbidden in Ontario (Supreme Court of Canada, Rasouli decision) * There are important distinctions embedded in the phrase “not capable of consent.” I may not be capable of consenting, or making my wishes known now but I may have been capable of making my wishes known in the past. Current legislation, which varies across Canada, permits me to make determinations now – either through an Advance Directive, or through instructions to my Power of Attorney for Personal Care, or substitute decision-maker, about the care I would not wish to receive at some time n the future. See the box Non-voluntary, passive. It is not clear, though highly important, whether under proposed changes to legislation I would, while capable, be able to request active euthanasia to take place at some later time when I was not capable. (Non-voluntary active.) But there is also a category of patient who has never been capable of making his or her own medical decisions. This would include infants or young children or adults who have never been capable. Under current health care legislation these patients would have some form of substitute decision-maker make treatment decisions on that person’s behalf. If active euthanasia were legalized should substitute decision-makers (or anyone else for that matter be permitted to request or consent to euthanasia for a person who had never been capable of making his or her own decisions? “Euthanasia” has become such a value-laden term it has become very difficult to get past the word to look critically at the actual practices we are concerned about. The CMA simply rejects the entire category of “passive” euthanasia as euthanasia. Euthanasia and assisted suicide, as understood here, must be distinguished from the withholding or withdrawal of inappropriate, futile or unwanted medical treatment or the provision of compassionate palliative care, even when these practices shorten life. The CMA does not support euthanasia or assisted suicide. It urges its members to uphold the principles of palliative care. So, let’s leave the word and focus on the deeds, and over to you: Should physician assisted suicide be legalised in Canada? Should physician assisted death be legalised? What should the limits be? Terminal illness? Intractable physical (psychic pain)? Voluntary (at the request of the capable patient) Can this request come in advance (an advance directive?)