Saying No: Ethics and Good Reasons for Denying Care

Should an alcoholic be denied a liver transplant unless he or she has been “dry” for six months?

Debra Selkirk the widow of Toronto businessman Richard Selkirk is preparing a constitutional challenge to the practice that denied her husband access to a liver transplant because he was an alcoholic who had only been “dry” for six weeks. CBC Radio ran this story, with ethics commentary on Friday November 6th. http://www.cbc.ca/radio/thecurrent/the-current-for-november-6-2015-1.3307075/widow-of-alcoholic-challenges-policy-for-denying-husband-liver-transplant-1.3307145 The patient was reportedly denied access to a liver transplant on the grounds that he had not been “dry” long enough. He died shortly thereafter. This restriction on access to liver transplants is pretty common across North America. Is it fair? Is it a justifiable restriction on access to care? What are good reasons for denying a person access to necessary medical care? Let’s look at some of those reasons and who gets to decide.

Medical futility

The best reason for not providing a person with a treatment is that the treatment will not work. That is, if the treatment would be medically futile – if it cannot provide the physiologic effect for which it is intended, then it does not need to be offered. (This needs a footnote, an exception is probably a resuscitation attempt. The reasons for this are complicated, it is probably associated with the idea that the standard of care in a hospital is that if a person arrests in hospital he or she will be resuscitated unless he or she has said otherwise.) Going back to not offering treatments on the grounds of medical futility, I would argue further that it should not be offered. (On the grounds that doing something that cannot work is a waste of resources, resources which are inevitably scarce.) In addition, the decision that a treatment cannot bring about the physiologic effect for which it is intended is an expert decision that belongs to physicians and care providers – rather than patients. This is clear in theory, but less so in practice. In practice treatments rarely cannot work, far more often they are unlikely – or even vanishingly unlikely to work. That leads to a rather different question – a cost-benefit decision, when is a treatment not worth offering – either because the likelihood of benefit is so low, or the cost is so high – or both?

Scarce resources and cost/benefit decisions

Cost benefit decisions of this type are amongst the most difficult for the health care system. Whether a treatment is “worth” the cost may very well depend on one’s perspective. There are also real puzzles of what constitutes a “benefit” and what benefits should count. For example some people would argue that continued physical life, even on life support, even if there is no evidence of interaction with the patient’s environment and even if the prospects for recovery are vanishingly remote would constitute a benefit. Others would say this is a benefit in name only, and certainly not a benefit worth funding from scarce health-care resources. Further, if person “A” accrues a given benefit for 5 years and person “B” the same benefit for 10 years, at the same cost then presumably we should fund person “B’s” treatment before person “A.” But that would have the effect of systematically favouring the young in health care – and do we really want to build in that bias to decision-making? These resource allocation questions are also those where authority for decision-making is most blurred. A cost-benefit, resource allocation decision is not simply a medical decision, nor is it just a matter of the personal preferences of the patient. At stake is what a community is prepared to pay for – so ultimately these decisions are small “p” political decisions, yet they are rarely identified or made as such.

Evidence and standards of practice

There are other reasons for denying access to a particular treatment or therapy, standards of medical practice and evidence are always relevant, and of course, on the other side, a patient can refuse care, and can do so either explicitly or by creating conditions that make it impossible to provide care. Do any of those reasons apply in the case of liver transplants and persons with alcoholism? The first question would concern the possibility that a liver transplant would be ineffective for a person who continues to drink or who has not demonstrated sobriety for six months. The evidence seems to be lacking. While it is true that for a liver transplant to be successful the patient would need to follow a regimen of immunosuppressive drugs and other care post-surgery and while it is also true that certain patients – on lifestyle grounds may be incapable of following such a regimen that is not the case for all people who have been diagnosed with liver failure as a result of alcohol consumption. So, rather than a six month rule or policy what would be required would be a careful assessment of each prospective patient in his or her actual situation.

Could it be a resource allocation decision?

Cadaver livers available for transplant are certainly scarce. But the issue of fairness in the first instance really only concerns whether the patient will get onto the list. It could also be that certain patients expand the liver donor pool by bringing with them potential live donors. Even if there was evidence that a person continuing to drink would make the transplant less effective, that is it might bring a shorter period of life, even then it is not clear that that should result in a denial of access to care. If we wish to treat persons equally we have to accept the idea that each individual’s life may well be of infinite value to that individual, in that respect we are all the same. The general approach in Canadian health care is that we are evaluated on the basis of our need and our capacity to benefit.

Bad reasons for denying care

We do not deny health care on any of the prohibited grounds for discrimination under federal or provincial human rights legislation. Nor do we deny care based on ability to pay.

Should we deny care on the grounds of personal responsibility for health status?

We generally take the view that ill health and disease are unfortunate facts of human life. No-one wants to be sick, or unwell so if you are it is a misfortune and the community will provide the health care you need to help you recover. Typically, we take the view that people are not responsible for their ill-health. But what if they are? There are many illnesses, diseases, and indeed accidents that occur as a direct result of the actions people perform. Smoking causes lung cancer (and heart disease and…) overeating is connected to obesity and diabetes, alcohol consumption with liver disease, and, of course, skiing with fractures, hockey and football with concussions and so on. Leaving aside the issue of whether an “addiction” allows you to escape personal responsibility there are plenty of examples of cases where individual choice has negative health consequences.

Should we be held responsible for those choices? The answer, of course, has to be yes. I must be responsible and accountable for the choices I make in my own life and that must include choices about diet, exercise, smoking, alcohol and so on. And certainly, as a community we should be reinforcing and promoting that individual accountability.

 But can or should a publicly funded health care system hold us accountable by denying care? Here, I think the answer has to be no. I do not see how health care providers (or anyone else for that matter) could possibly become the arbiters of the deserving and underserving sick. Were you driving too fast when the crash occurred? When did you stop smoking – have the last drink? How often do you exercise…? What would it look like to deny care under those circumstances? This would mean that we would refuse care to those who were suffering and dying, it would mean that we would turn people away from our Emergency Departments, it would mean that we would turn our backs on those in need.

 I would not wish to be part of a community that made those choices. But, health care resources are always limited, and that always has the effect of meaning that if we do “this” then there is some other good “that” that cannot be performed. Those choices must be made, but they must be made openly and on grounds we understand and accept.

Debra Selkirk is forcing that discussion onto the public stage, and thanks to her for that.

Rob Butcher. November 2015

Vaccination, ethics and health care workers.

Flu season will soon be upon us and once again the issue of “encouraging” or perhaps “coercing” health care workers to get vaccinated will be upon us. The accepted evidence is that flu vaccination is the best available method for reducing both the spread and the influence of influenza. Therefore, because health care workers care about the safety of their patients there are good ethical reasons for getting vaccinated. Health care organizations should encourage vaccination as a legitimate patient safety initiative and I would argue health care professional associations should do the same. Health care organizations also have an obligation to ensure that vaccination is as easy as possible. However, what happens when vaccination rates in a particular organization remain low? One approach, increasingly adopted by hospitals in Ontario was to adopt a “vaccination or mask” (VOM) policy. A VOM policy requires hospital staff to be vaccinated – or, if they cannot or choose not to be, they must wear a mask. The nuances of the policies vary, sometimes a mask is required for the entire flu season sometimes it is only required when there is an outbreak – either in the community or within the hospital. Hospitals argue that the legitimate goal of protecting patients permits them to introduce such polices and that employee rights are respected in that the employee can choose his or her method of patient protection. These policies resulted in a number of grievances being filed across the province and the first of those regarding the Sault Area Hospital was adjudicated this month. Arbitrator’s decision in the Sault Hospital’s Vaccinate or Mask policy. The arbitrator was asked to – and did, evaluate all the scientific evidence presented. He took the view that it was his job to decide on the weight of the evidence, not to declare a “draw” in the face of competing evidence. An alternative approach would be to accept that an employer has the right to act on the basis of “good” though not unchallenged evidence. The arbitrator found that the vaccination or mask policy was introduced to drive up vaccination rates and that the requirement to wear a mask for the entire flu season (up to six months) was not warranted on the grounds of patient safety. The policy was therefore found to be coercive. The arbitrator took the way in which the vaccination or mask policy had been adopted and implemented to be significant. The, “or mask” part of the policy was adopted quite clearly as a means of driving up vaccination rates and the mask requirement was introduced despite the lack of evidence that surgical masks would make an appreciable difference to patient safety. A sledgehammer and a nut. The benefits to patients of a vaccination or mask policy accrue if transmission from health care workers to patients is diminished. But the benefits of the policy only come from diminished transmission by those HCWs that only got vaccinated or wore a mask because of the policy. Many HCW would get vaccinated or wear a mask regardless of the existence of a VOM policy. The evidence that reduced transmission from this group is significant is lacking. The policy that requires wearing a mask for the whole flu season is therefore disproportionately onerous and unjustified. Further, if wearing a mask was warranted on the grounds of patient safety, then, in a year where there is a significant mis-match between the vaccine and the prevalent flu strain, rendering vaccination substantially ineffective, all staff, vaccinated or not, should be required to wear a mask. This, of course, does not happen. Ethics and policy. An ethicist should probably not be seen arguing for the limits of ethics and policy setting but it is worth pointing out one other significant and salutary part of the arbitrator’s discussion. The Toronto Academic Health Science Network’s Healthcare Worker Influenza Immunization Working Group published a report in February 2014. In that report the ethical considerations relevant to influenza vaccination policies were reviewed. They included the duty not to harm others, proportionality, individual liberty, and privacy. They concluded that VOM policies were less intrusive than simple vaccination-required policies, and that VOM policies would be ethically defensible if voluntary vaccination rates remained low. The report also identifies that the key factual pieces – that mask use reduces transmission or that VOM policies have resulted in reduced outbreaks of influenza in hospitals would have to be established. However, the report contains no evidence that supported either of those two key factual components. In ethics there is a long-standing division between “facts” and “values,” or between “is” and “ought.” Roughly, the facts alone cannot tell you what you “should” ethically do. However, ethical reasoning often relies heavily on facts. Often in our ethical decision-making we argue, we should do this because – it fits with our values or principles, and these are the relevant facts. But the facts have to be there and they have to be right. Do you get vaccinated? (I do.)

Professionalism and ethics

The College of Physicians and Surgeons of Ontario (CPSO) has a policy draft out for consultation on Professionalism and Human Rights. Though the policy would directly apply only to physicians the topics raised in the policy are significant for all health care professionals.

The nature and sources of moral – or ethical obligation.

I will use the words "moral" and "ethical" interchangeably, some people wish to maintain a distinction between "moral" as something more within the personal domain, and "ethical" as something more public or social, but as we will see in this piece that distinction won't help us, at the end of the day there is just you, or me, deciding what you or I will do. We have a variety of sources for our moral or ethical commitments. I am a member of a family, and a community, I live in a shared environment, each of these bring moral obligations. I have obligations to my children, my partner, and my extended family and I have those obligations because of my relationships with those people. I have an obligation to my community and environment because I share that space with others. Some would argue that I have ethical obligations to respect the law and some people have moral convictions that stem from their religious beliefs, and – and this is the issue here, many of us have ethical obligations that stem from our roles as professionals. (Of course those preceding couple of sentences could be a book chapter – or indeed the book itself, this is all contested territory, but the point I want is that our moral obligations legitimately come from a variety of sources.) Most of the time that all fits more or less neatly together. We typically choose our relationships, religious beliefs and professions in accordance with our deepest values and we can often juggle the pieces to fit. But not always.

 

An example of conflict

Some years ago, in the aftermath of SARS many health care organizations started to develop pandemic plans. In the context of those plans issues of staffing arose, what would happen if there was a pandemic and health care professionals were fearful for their own safety? I was summonsed, along with the other ethicist working in the area and we were told by a senior hospital administrator that we were to go out and do some education sessions on the "duty to provide care." After my initial reluctance to do what I was told… the next thing was to think about the duty to provide care. Is there such a duty for a health care professional? And of course it's pretty easy to get to the conclusion – yes. But as the sessions progressed it quickly became apparent that that was only part of the story. Is there a duty for a health care professional to provide care – yes. Is there a duty for a parent to look after his or her children – yes. What happens when those two duties collide? (When your day care plans have fallen though because your usual provider is sick and so on.) In this case a professional ethical obligation came into conflict with a personal moral obligation. In this case it is clear what people will do but this realisation interestingly shifts the problem for organizations. The original thought was that the obligation to provide care should be preached – and that this would be enough – in effect the burden would be placed on the shoulders of care providers. But this could not be the solution. Care providers themselves have other, potentially competing moral obligations too. The real problem for health care organizations had to be to work out how to support staff to make it as easy as possible for them to fulfill their health care obligations. That would mean encouraging people to make contingency plans for their other obligations – and supporting those plans where possible, and in providing as safe as possible a work environment. Sometimes our professional obligations can come into conflict with our other obligations – and at that point we have to decide what we – as persons will do.

 

Physicians and the duty to refer.

First, let's lay the groundwork. Medicine is a self-regulated profession. That is, medical practitioners have been given the social right to set their own standards of practice and to ensure that the training, education, and discipline of practitioners meet those standards. In Ontario the authority to ensure that this occurs is granted to the CPSO. The CPSO describes self-regulation as a privilege, and medical professionalism as a social contract, a covenant between the profession and society. (The Practice Guide: Medical Professionalism and College Policies. http://www.cpso.on.ca/uploadedFiles/policies/guides/PracticeGuideExtract_08.pdf ) The CPSO acts, in effect, as the mediator between the medical profession and the broader society which grants physicians their authority to practice. Physicians, practising in Ontario have accepted a professional ethical obligation to practice in accordance with CPSO values and standards.

The draft policy says the following:

156 Where physicians are unwilling to provide certain elements of care due to their moral or religious

157 beliefs, an effective referral to another health care provider must be provided to the patient. An

158 effective referral means a referral made in good faith, to a non-objecting, available, and accessible

159 physician or other health-care provider. The referral must be made in a timely manner to reduce the

160 risk of adverse clinical outcomes. Physicians must not impede access to care for existing patients, or

161 those seeking to become patients.

162

163 The College expects physicians to proactively maintain an effective referral plan for the frequently requested services they are unwilling to provide.

http://policyconsult.cpso.on.ca/wp-content/uploads/2014/12/Draft-Professional-Obligations-and-Human-Rights.pdf

There are almost a thousand comments on this draft policy on the CPSO web site. Most of them objecting. In many cases the argument seems to be that, informing someone that while I do not do this someone else does, is somehow the moral equivalent of performing the deed itself. That does not seem quite right to me. It sounds a bit like suggesting that a librarian is responsible for doing the things described in the books on the library shelves. It is the case that a number of practices, for example, some forms of contraception, assisted reproduction, and abortion, are permitted in Ontario and can only be accessed through the medical profession. While a physician may choose not to offer those services him or her-self competent, ethical members of the same profession, in your jurisdiction, do, and informing your patient of that fact is not the moral equivalent of performing the act yourself.

The CPSO has situated the duty to refer in the context of the profession's commitment to the broader community. That professional commitment then becomes binding on individual physicians. From the social perspective it is easy to see the point. The health care system in Ontario is a system of interlocking pieces. Physicians play a privileged role in that system. Furthermore, access to any part of the system is often controlled by physicians. No physician therefore, should be in a position to impede access to that system. Hence the duty to refer.

Ultimately, it is up to each one of us – physicians or not to decide how we will conduct our moral lives. Our moral obligations do indeed spring from a variety of sources and in the event of conflict we, each of us, must choose what we do. But, how we honestly, and carefully reflect upon and conceptualize our moral obligations and how they do or do not conflict is hugely significant, and may make all the difference.

 

Supreme Court of Canada Rules on physician assisted death

 

On February the 6^th 2015 the Supreme Court of Canada issued its ruling in the Carter Case. The ruling is unanimous and unequivocal.

Section 241 (b) and s. 14  of the Criminal Code  unjustifiably infringe s. 7  of the Charter  and are of no force or effect to the extent that they prohibit physician-assisted death for a competent adult person who (1) clearly consents to the termination of life and (2) has a grievous and irremediable medical condition (including an illness, disease or disability) that causes enduring suffering that is intolerable to the individual in the circumstances of his or her condition.

Section 241 of the Criminal Code prohibits aiding or counselling suicide and Section 14 prohibits consenting to one's own death. Both sections are judged to be void, and the judgment is suspended for one year to allow new legislation. Section 7 of the Charter concerns the right to life and liberty.

Everyone has the right to life, liberty and security of the person and the right not to be deprived thereof except in accordance with the principles of fundamental justice.

Some of the arguments in this case were novel.

It was ruled that the right to life and liberty was breached because the law against assisted suicide had the effect of requiring some people to take their own lives earlier than they would have done if they could have had someone assist them.

Here, the prohibition deprives some individuals of life, as it has the effect of forcing some individuals to take their own lives prematurely, for fear that they would be incapable of doing so when they reached the point where suffering was intolerable.

That is, for instance, in the case of someone with a neurological degenerative disease where the person becomes progressively physically incapable, that person would have to commit suicide earlier – while physically capable of doing so, than he or she might choose if assistance was available. This deprives that person of his or her right to life. As has been pointed out elsewhere this is a "right to life" argument used to support physician assisted death.

But there is more:

The rights to liberty and security of the person, which deal with concerns about autonomy and quality of life, are also engaged. An individual's response to a grievous and irremediable medical condition is a matter critical to their dignity and autonomy. The prohibition denies people in this situation the right to make decisions concerning their bodily integrity and medical care and thus trenches on their liberty. And by leaving them to endure intolerable suffering, it impinges on their security of the person.

This is a more conventional version of the argument from autonomy or liberty. But the two arguments are significantly different and would lead to quite different conclusions. For instance, the "forcing some individuals to take their own lives prematurely" argument only applies in those cases where there is a progressive physical degeneration which requires the person to act now because he or she will be physically unable to act later. This would apply only to a very restricted number of cases. (I will come back to those situations where the degeneration or decline is mental rather than physical later.) However, the "right to make decisions concerning bodily integrity" argument leads to far wider conclusions. The judgment rests on the latter argument. The judgment does not speak to issues such as progressive physical deterioration, or terminal illness, nor does it restrict physician assisted death to situations where the person is actively or imminently dying. This decision would grant the right of any competent adult with a "grievous and irremediable medical condition" to seek physician aid in dying. What counts as "grievous"? That is probably in the perception of the person him or herself, where the disease causes "enduring suffering that is intolerable to the individual."

This judgment is momentous, in many respects it settles one part of the debate. It will be very difficult now to argue against physician assisted death in all circumstances. The debate will shift now to the circumstances under which physician assisted death will be permitted. The debate has become not if – but how.

On the "how" question, for many people their greatest fear is not physical degeneration and decline, but rather mental decline. The family of Gillian Bennett (see: deadatnoon.com/ ) argued that their mother was forced to commit suicide sooner than she would otherwise have done in order to avoid mental decline. The "forcing some individuals to take their lives prematurely" would apply to her, but she would not meet the "competence" test at the time that she would wish the death to occur. The issue of advance directives concerning physician assisted death will have to be dealt with at some stage.

There is plenty more to say, the issue of physician and care-provider conscience was raised in the judgment and left open for legislation at either the federal or provincial level.

What do you think?

College of Physicians and Surgeons of Ontario Policy Consultation: Planning for and Providing Quality End-of-Life Care

In December the CPSO issued three draft policies for consultation: Planning for and Providing Quality End-of-Life care, Consent, and Professionalism and Human Rights. The consultation period runs until Feb 20^th 2015. All three policies deal with significant ethical issues so I will blog on all three. http://www.cpso.on.ca/policies-and-publications/consultations

 

Planning for and Providing Quality End-of-Life care. http://policyconsult.cpso.on.ca/wp-content/uploads/2014/12/Draft-Planning-for-and-Providing-Quality-End-of-Life-Care-Policy_WP.pdf

The document is quite comprehensive, it has ten sections and runs to about 15 pages. (However, it does not discuss issues of feeding or withholding food and hydration.) In the commentary that follows numbers in parentheses refer to line numbers in the draft policy document. The most contentious section is 5.2 (lines 215-251) discussed in some detail below.

1. Quality Care

2. Communication

3. Advance Care Planning

4. Consent to Treatment

4.1 No Treatment Without Consent

4.2 Capacity at the End of Life

4.3 Consent on Behalf of an Incapable Patient

5. Interventions and Care Management

5.1 Palliative Care

5.2 Life-Saving and Life-Sustaining Treatment

5.3 Aggressive Pain Management and Palliative Sedation

6. Dying at Home

6.1 Home Care

6.2 Certification of Death

7. Wishes and Requests to Hasten Death

7.1 Responding to Wishes and Requests to Hasten Death

7.2 Euthanasia and Physician Assisted Death

8. Managing Conflicts

8.1 Conflict Resolution

8.2 Conflicts with Substitute Decision Makers

8.3 Conscientious Objection

9. Documentation

10. Organ and Tissue Donation

 

The introduction sets up the nature of the fundamental challenges in providing good end-of-life care. On the one hand good end-of-life care "aligns with patients' wishes values and beliefs" (8) but on the other hand care must meet the standard of care and physicians are charged with assisting "patients in identifying meaningful and realistic goals of care." (15) Squaring that circle and identifying the shifting roles and decision-making authorities in the relationship between physicians, patients and their families and substitute decision-makers is the objective of the policy.

 

Those challenges are compounded by the key principles identified by the College as governing physician practice. The first is "Acting in the best interests of their patients." (22) That principle articulates a central component of the historical relationship between physicians and patients but it is a contested and limited principle. First, the statement of the principle this way presupposes that we understand what we mean by "best interests" of the patient. "Best interests" according to whom? The Health Care Consent Act (HCCA, Ontario 1996), (http://www.e-laws.gov.on.ca/html/statutes/english/elaws_statutes_96h02_e.htm) describes one of its purposes as enhancing the autonomy of persons for whom treatment is proposed. (Section 1.C) It does not contain as part of its purpose "promote patient welfare or well-being or enhance the best interests of patients." The structure of the act entitles the capable patient to refuse treatments. But that right to refuse treatments is not limited by some objective or external view of the patient's "best interests." Rather, what the Act does, in effect, is define "best interests" as whatever the patient says is in his or her "best interests." The language of "best interests" is only found in the Act where a substitute decision-maker is being asked to make a decision in the absence of a patient's previously expressed wishes, and even then "best interests" is qualified as being subject to the patients' values and beliefs. (Section 21.2)

 

At its worst "acting in the best interests of patients" is a cloak for paternalism. What should a physician do if she firmly believes that the course of action – refusal of treatment or insistence on a resuscitation attempt, is clearly contrary to the patient's best interests? (We will pick this topic up in more detail a little later.)

 

Much of the policy is uncontroversial. There is an emphasis on early, consistent communication and advance planning. The policy repeatedly stresses understanding the patient and his or her values and treating the patient as a complete person. In a telling remark at line 106 "It is also important for physicians to understand and personally acknowledge that in certain circumstances treatment cannot prevent death." Now that is hardly news, but it is an attempt to acknowledge that a current problem in end-of-life care is continuing aggressive, intended to be curative, interventions beyond the time that hope for cure is reasonable.

 

The responsibility of physicians to initiate and sustain these conversations and interactions is also made clear: "Physicians are advised that they may need to initiate these discussions sensitively, over multiple occasions as patients may not always be ready to participate." (143)

 

No treatment without consent (see also subsequent discussions on the Consent to Treatment draft policy.)

The policy notes that withdrawals of life-sustaining treatment are considered treatments under the HCCA as interpreted by the Supreme Court of Canada in the Rasouli case. Substitute decision-making is discussed and physicians are reminded that substitute decision-makers are obliged under the HCCA to follow the previously expressed wishes of the patient while capable. Physicians are also advised that they can seek the intervention of the Consent and Capacity Board (CCB) in the event of disputes with a substitute decision-maker.

 

Palliative care is recommended as early as possible as this can lead to improved quality of life for patients. (203)

 

Section 5.2 Life-Saving and Life Sustaining Treatment (lines 215-251) this is the controversial part.

 

"Physicians are not obliged to propose or provide life-saving or life-sustaining treatments that are not within the standard of care. However, when a life-saving or life-sustaining treatment falls within the standard of care, physicians must identify this treatment option for the patient and/or substitute decision-maker even if it is not the physicians' preferred treatment option." (221ff)

"Physicians must involve the patient and/or substitute decision-maker in the assessment of those treatment options that fall within the standard of care and be prepared to provide a life-saving or life-sustaining treatment if the patient or substitute decision-maker chooses this option and provides consent. Physicians are advised that patients and substitute decision-makers

may assess the proposed treatment options differently than the physician as they may consider, for example, whether the treatment prolongs life even if there is no clinical benefit." (225ff)

 

The issue here is patient or family demands for "inappropriate" or "futile" treatments. Is a physician obliged to provide, for example, ventilation, or other life-sustaining interventions in an ICU because the patient or family demands it, even, for instance, if the patient has no realistic prospect of regaining consciousness? Is a physician required to insert a feeding tube at the demand of a family, even if there is no reasonable prospect for any sort of recovery and even if an external assessment of the patient indicates continued, extremely poor, quality of life? Should a physician be required to re-insert that feeding tube if the patient with dementia repeatedly pulls it out? How could a treatment that prolongs life but brings no clinical benefit be within the standard of care?

 

The fundamental question concerns who has the authority to make what decisions in end-of-life care (or health care more generally.) Normally, the physician determines what treatments may be appropriate and available and offers those treatments to the patient (or substitute decision-maker). Patient consent is the action or process of choosing from amongst those offered treatments – or rejecting all of them. Physicians have never been required to offer futile or inappropriate treatments (nor should they – I'd say it's their job not to.) This draft policy relies on the phrase "standard of care" to do the job of determining what treatments must be offered and then, if consented to, must be provided – rather than a physician's clinical judgment in any particular case. The problem here is that "standard of care" is too vague and nebulous a concept to do the job that is required. Some good physicians would accede to any of the patient or family requests listed above – and some good physicians would not. In the past physicians would have been able to defend their decisions not to offer and not to provide inappropriate or futile treatments on exactly the grounds that the treatments were inappropriate or futile. That method of reasoning is no longer available under this policy. If a good physician could offer the treatment under the same or relevantly similar conditions, that is, if the treatment is consistent with a conception of the "standard of care" then any physician must offer and provide it. This policy clearly tilts the balance of power in favour of patients and families, in effect not just giving them the power to consent to (refuse) treatments but rather giving them the right to demand.

 

The SCC in the Rasouli case attempted to limit their judgment to prevent this slippage. They said that their judgment applied only to withdrawals of life-sustaining treatment, and further said that patients are only entitled to consent to those treatments that have actually been offered by a health-care provider. That is, the consent doctrine and the HCCA does not determine what must be offered just what requires consent. At the time some commentators (myself included) worried that the SCC reasoning might be applied to justify patient demands, rather than just consent. This CPSO draft policy does exactly that.

 

This point is made even more clearly in lines 236-240.

 

When physicians propose a "Do Not Resuscitate" order (i.e. that cardiopulmonary resuscitation not be provided if the patient experiences cardiac arrest at some point in the future), they must explain to the patient and/or the substitute decision-maker why they propose not to provide the treatment and provide details regarding the alternative treatment(s) that they propose be

provided. The College requires physicians to obtain consent for a "Do Not Resuscitate" order. (236-240)

 

CPR is a treatment, and rightly considered as a treatment that is not appropriate in all cases. In some cases an attempt at CPR is genuinely futile – that is, it cannot have the effect for which it is intended. But here the College is requiring that a physician get consent to not do something that would not work. There is a certain absurdity to this. (If physicians had to get consent to every action that would not work and that they did not intend to perform, they would have to spend all of their time listing futile treatments and getting agreement not to do them.) The practical effect of requiring consent to a DNR is pernicious. If patient or substitute decision-maker consent is not forthcoming the physician is required to perform CPR even if that attempt is pointless and indeed assaultive. That does not promote patient autonomy – just the opposite it is dehumanizing, for both the victim and the physician forced to perform the assault.

 

The College believes that is has to adopt this position as a result of the ruling in EGJW v. MGC, 2014 CanLII 49888 (ON HPARB) In this case from Sunnybrook a DNR order was written without the patient's substitute decision-maker's consent and against her express wishes. With respect, I would suggest that this ruling does not settle the issue.

 

There is a further issue (one explicitly not considered by SCC in Rasouli) and that concerns the cost of health care. Many commentators describe health care costs in Ontario as unsustainable. And while there is some debate about the exact percentage a great deal of health care expenditure occurs in the last months or year of a person's life. Some treatments are inappropriate because they do not bring a sufficient benefit to warrant the expenditure. While it is an open question just how we should limit health care expenditures it should be clear that granting patients or their families the right to demand resuscitations that cannot lead to a meaningful recovery (and then transfer to an ICU?) and to demand life-sustaining treatments that their physicians believe really only prolong dying, can only lead to increased ICU admissions and additional unsustainable costs. Is this a good way to use scarce health care resources?

 

The rest of the draft policy is largely uncontroversial – including the section on requests for euthanasia. It is against the law in Ontario. Section 5.3 deals with Aggressive Pain management and Palliative Sedation. This section makes it clear that there cannot be an intention to use medication to hasten death and that pain relief and sedation must be in proportion to the pain or symptoms. (257)

 

The College invites comments and feedback, their contact information can be found on their web site.