Do Religious Patients’ End of Life Wishes Bind Medical Decision-makers?

Charles Wagner wrote a blog in 2007 entitled  “Are Halachic Powers of Attorney for Personal Care Binding in Ontario?” He reviewed Powers of Attorney drafted by a number of Orthodox Jewish organizations and questioned whether decisions made by attorneys for personal care based on those documents would bind doctors, the Consent and Capacity Board, or Judges.  Much of the commentary and analysis in that article centered on the 2004 decision in Scardoni v. Hawryluck.¹ Nearly 20 years have passed since Scardoni was decided. There have been developments in recent cases that impact the question of how best to safeguard the choices of people of faith with respect to “end of life” decision-making. The purpose of this blog is to review those cases and provide some insight about how best to ensure faith-based wishes are respected and followed by medical professionals, tribunals and the Court.

I.  “Substitute Decision-Making”

Historically, a power of attorney was really commercial in orientation, allowing the person who made the instrument (the “donor” of the power of attorney) to authorize a delegate (the “attorney”) to transact business with a third party in the name of the donor. However, there were strict limits. If the donor became mentally incapable, the power of attorney lost effect and the common law held any transactions entered into on the strength of the power of attorney could be impeached. Matters like giving consent to health care treatment or other such “personal care” lay far outside the scope of delegated decision-making.

The law began to change in earnest following President Truman directing the American Federal Security Agency to hold a national conference on aging in 1950. In Ontario, law reform started in earnest years later with the Law Reform Commission of Ontario’s Report on Powers of Attorney in 1972.

Our present model of “substitute decision-making” was created about 30 years ago together with a number of changes to how consent to medical treatment should be regulated. Three statues were enacted to set out how decisions could be made, reviewed, and challenged where the person who would ordinarily have the right to make the decision in question is “incapable” of doing so. The Substitute Decisions Act, 1992² created a new device called a “Continuing Power of Attorney” that, unlike a conventional power of attorney at common law “continued” beyond incapacity. The Mental Health Act³ deals with, amongst other matters, involuntary admission to a mental health facility and the treatment of patients in such a facility. The Health Care Consent Act, 1996⁴ deals with the provision of consent to treatment in situations ranging from the unconscious accident victim brought in for emergency treatment to conventional clinical treatment by health care professionals. Together with the basic model of law that these statutes created was also a special administrative tribunal called the Consent and Capacity Board and the delineation of the role played by the Ontario Public Guardian & Trustee in “substitute decision-making.” Importantly, the Ontario Public Guardian & Trustee may become an incapable person’s substitute decision-maker where an incapable person has not made an effective Continuing Power of Attorney for either Personal Care or Property management or both. It is a complex area of law that is still in its infancy but rapidly maturing.⁵

The Role of the Court and the Consent and Capacity Board

Physicians and other health-care professionals are obliged to obtain a patient’s consent to medical treatment.⁶ If the patient is incapable of providing consent, a person or persons appointed by the patient to act as his or her substitute decision maker (“SDM”) has the right to refuse or consent to treatment. Depending on the circumstances, consent can be given by other persons (including the treating physician) as the circumstances merit. The decision of the proper substitute decision-maker to consent to or refuse treatment is not a matter of individual discretion untethered to any standard. A SDM must be guided by the now-incapable person’s “last capable wishes” in respect to the decision in question. Where there is no SDM (or multiple SDMs appointed jointly to make decisions can’t agree) or where the incapable person has not expressed any wishes on point, a “best interests” test becomes relevant.

Where a SDM purports to make a decision that does not comply with the provisions of the governing statute, a physician may apply to the Consent and Capacity Board by virtue of section 37 of the Health Care Consent Act (“HCCA”) for “directions”; that is, a mandate to act in a certain way. Pursuant to Section 80 of the HCCA, either the SDM or the physician may appeal the Board’s decision to a Judge of the Superior Court of Justice on a question of law or fact or both.

The distinction between proceedings before the Consent and Capacity Board and the Court is a significant one. It is intended that the Consent and Capacity Board is a quicker and less expensive route to a panel of decision-makers with greater expertise and the ability to hold hearings even at the bedside of a patient. Proceedings before the Court are much more formal, much slower, and certainly more expensive. One aspect of the developing jurisprudence has been for greater care to be taken in determining which is the appropriate forum in the first instance, with recent cases highlighting the propriety of first-instance proceedings before the Consent and Capacity Board where a fulsome record of relevant evidence can be compiled.

Difficult Cases and the Choice of Forum

In speaking with colleagues in this area of practice, it is apparent that there are some medical professionals who wish to test the boundaries of the types of decisions that require consent and those decisions that can be made by a physician or panels of physicians independently. The question of where the dispute should be taken for resolution in the first instance has become a hot-button issue in such cases.

For example, the recent case of Morlani v. Haddara⁷ dealt with a situation in which the issue was whether an apnea test should be administered to determine neurological death. In dispute was whether the test was harmful in itself, and, even if administered and the results were consistent with neurological death, whether the question of whether death had occurred should be informed by the apnea test. This is a difficult decision as both the test itself and its utility were put under scrutiny. The matter was brought into Court but Justice Nicholson held that the dispute should be heard in the first instance by the Consent and Capacity Board on the basis that the Board was in a better place to assess the evidence and that a route for a timely appeal was available:⁸

Unlike the presentation before me on this motion, the Board has the ability to hear directly from the experts, and the treating physicians, who will also be subjected to cross examination. The Board also has expertise to critically evaluate that evidence that the court may well lack. Finally, the Board has an appreciation of the mandate of the HCCA and the types of analogous procedures that it may or may not have been intended to encompass as requiring consent.

While the jurisprudence on this point is not extensive, the recent cases suggest that courts will defer to the Consent and Capacity Board in the first instance absent truly compelling reasons why a Judge would be better disposed to decide the dispute. Whether this approach is sound or not is a matter that should become clearer with time.

II. Responding to Disputes About “Treatment”

Is a withdrawal of treatment by a doctor considered treatment?

A basic consideration respecting whether the CCB or a Judge has jurisdiction to decide a dispute between a SDM and treating physician is whether “treatment” is at issue at all, and specifically whether the withdrawal of treatment is itself a form of treatment. The Supreme Court of Canada considered the point in the 2013 case of  Cuthbertson v. Rasouli.⁹ The Court ruled that the withdrawal of medical treatment falls under the definition of “treatment” in the HCCA.¹⁰ As explained by the Supreme Court,

This case presents us with a tragic yet increasingly common conflict.  A patient is unconscious.  He is on life support — support that may keep him alive for a very long time, given the resources of modern medicine.  His physicians, who see no prospect of recovery and only a long progression of complications as his body deteriorates, wish to withdraw life support.  His wife, believing that he would wish to be kept alive, opposes withdrawal of life support…   The appellant physicians in this case take the position that the HCCA does not apply because consent is not required for withdrawal of life support that does not provide any medical benefit to the patient.  The courts below rejected that contention, as would I.  It follows that the appeal should be dismissed.  Where a substitute decision-maker does not consent to the withdrawal of life support, the physicians’ remedy is an application to the Board.¹¹

The fact that Mr. Rasouli was a devout Muslim, and that, according to his wife, his belief would have meant that he wanted to remain on life support as long as possible, was insufficient evidence to convince the Court that Mr. Rasouli had expressed a prior wish applicable in the circumstances. Writing for the majority, McLachlin C.J.C. ruled that Mr. Rasouli had expressed no clear prior wish that applied in the circumstances of his illness.  Decisions regarding his medical treatment therefore fell to his substitute decision maker based on a “best interests” standard, per s. 21(2) of the HCCA. An order to withdraw life support could then be sought by the attending physicians through an application to the Consent and Capacity Board.¹²

Prior Expressed Wishes

Section 21(1) of the HCCA¹³ requires anyone who makes a decision to give or refuse treatment on an incapable person’s behalf must do so according to a prior expressed wish. If no prior expressed wish is known or no wish is applicable to the circumstances, the decision maker must act in the best interests of the incapable person.

The Supreme Court took the opportunity in Rasouli to further define the elements of a prior expressed wish. A prior expressed wish must:

1. Be made by someone who is over 16 years old;
2. Be made by someone who is capable;
3. Be applicable in the present medical circumstances of the declarant; and
4. Be known to the decision maker at the time the decision is to be made.¹⁴
5. The questions of capability and applicability are especially important. To assess capability, the decision maker must be satisfied that the declarant was capable of “appreciating the nature, purpose and consequences of the proposed treatment” at the time they made the wish.¹⁵ The legal debate on what constitutes “capability” or “capacity” is lengthy, and is outside the scope of this article.¹⁶

Rasouli also emphasizes the importance of intention, which is the central concern in many cases concerning prior expressed wishes. A prior expressed wish is neither eternally applicable nor applicable in all circumstances. The key question is whether the declarant intended the wish to apply in their current circumstances.¹⁷ A wish that is “unclear, vague or lacks precision” is more likely to be considered inapplicable.¹⁸

Evidence of Prior Expressed Wishes

Courts often give more weight to the clearly articulated wishes set out in a statement of wishes or Power of Attorney.  However, the Court is willing to accept evidence about a prior expressed wish from any source it deems credible. The wish’s applicability to the present circumstances remains the key evidentiary threshold.

The decision in Ackie et al. v. Manocha¹⁹ illustrates how the Court assesses the applicability of a prior expressed wish. In Ackie, Clescelia Ackie-Friday had been in a vegetative state for two years with no prospect of recovery. Her mother, Merle Ackie, sought to keep Clescelia on life support, while Clescelia’s attending physician, Dr. Sanjay Manocha, advocated to transfer her to an end-of-life palliative care plan. Merle testified before the CCB that Clescelia was a very spiritual person who believed in miracles and natural medicine, and that she should therefore be kept on life support in the hope that God would intervene.Clescelia had no POA or living will containing a prior expressed wish. The CCB accepted the evidence of Clescelia’s pastor, who testified that her spiritual beliefs would not have precluded palliative care. The CCB accepted the pastor’s evidence, and found that there was no prior expressed wish applicable to Clescelia’s circumstances. It ordered her transfer to Dr. Manocha’s palliative care plan. The Court upheld the decision on appeal.²⁰

The decision in Ackie demonstrates that the Court will accept evidence of prior expressed wishes relating to religious beliefs outside of those expressed in a POA. The obvious question that follows is what other ways the Court will assess prior expressed wishes relating to medical treatment in the context of religious beliefs.

III.  Death, Rights, and Values

At what point is someone dead?

Assume for the sake of argument there is some perfect Power of Attorney for Personal Care / Statement of Wishes which makes it undoubtedly clear what the person making the instrument wanted to happen in an end of life situation.  Those wishes will not necessarily be honoured if the law considers that patient to have already died.  The decisions in McKitty²¹ and Ouanounou are relevant.²²

In McKitty v. Hayani, the patient was brought into the hospital unconscious.  The doctors said she met the neurologic criteria for death.  They suggested that the mechanical ventilation should be removed so that her heart would then stop beating.   The CCB  declined jurisdiction.  They held that if the patient was brain dead they had no jurisdiction.  The patient’s family position was set out in paragraph 30 of the decision.  In summary, they argued that Ms. McKitty’s heart is beating and her organs are functioning physiologically, she is alive and mechanical ventilation ought to be maintained until such time as her heart stops beating. The existing process by which brain death is determined in accordance with the VSA and existing medical guidelines in Ontario violates Ms. McKitty’s s 2(a), 7 and 15 Charter rights.  As well, the determination of death requires an assessment of not only medical considerations but also the values, wishes and beliefs of the individual patient and in order to be compliant with the Charter, the determination of brain death ought to include an accommodation of religious beliefs and provide an exemption for those who hold a religious belief that death only occurs when there is a loss of cardiorespiratory function.  Justice Shaw, an Ontario Superior Court Judge,  found that when a patient was brain dead, she was not a person and she had no rights under Canadian Charter of Rights and Freedoms.  The Ontario Court of Appeal affirmed Justice Shaw’s decision, but its reasons open the door to future litigants who will argue that removing a person from a ventilator violates their constitutional rights under the Charter.

The Ontario Court of Appeal agreed with Justice Shaw that brain death equals legal death in Ontario.  However, the Court of Appeal stressed that both cardiopulmonary death and brain death have been judged by common law to equal death²³. In paragraph 58, the Ontario Court of Appeal held,

…..I set out the applicable doctrine of freedom of religion, review the evidence of the appellant’s religious beliefs, and conclude that the appellant’s beliefs come within the protection of s. 2(a). The more ultimate question of whether the appellant’s s. 2(a) rights have been limited is better left, however, to a case with a more developed record. Neither would it be appropriate here to assume a first-stage finding that a Charter right has been limited, for the purpose of continuing with a second-stage inquiry into whether a Charter right has been violated. A finding of a Charter rights violation, where the limit in question is prescribed by law, can only be made after a s. 1 inquiry in which it is determined that the limit is not justified. Justification of a limit requires that a court consider the reasons for the limitation. The proper party to supply those reasons and defend the limitation is, in this case, the Attorney General for Ontario. As that party was not before the court, there is no record that would allow for an assessment of the reasonableness of the limit, and I would decline to do so in this moot appeal.

Our view is that the Court of Appeal’s decision leaves open the possibility that the issue may be revisited with a more developed record that showed the patient’s end of life choices more definitively. Such might have been the case if the Ouanounou v. Humber River Hospital et al²⁴ case had come before the Court of Appeal.

The Ouanounou case was decided after the McKitty case lower court decision,  but prior to the Court of Appeal decision in McKitty.  It is instructive because in this instance there was no dispute about the patient’s prior wishes.  Everything turned on the definition of death.  Shalom Ouanounou was an Orthodox Jew. He experienced an asthma attack and  was  placed on ventilator life support. The doctors declared him to be brain dead. Shalom’s family explained that both Shalom and they believed a person was not dead, under Jewish law, until he stopped breathing and his heart stopped beating. Neither had occurred because he was on ventilator life support.  During the court process Shalom’s heart stopped beating while he was still on the ventilator.  Justice Haney decided that the application was now moot and he would not exercise his discretion to decide the issues before him.²⁵

Disputes Over Prior Expressed Wishes

In Friedberg v. Korn,²⁶ the Court considered the weight to be given to extrinsic evidence when assessing the applicability of a prior expressed wish. In this case, Freida Freidberg, a devout Orthodox Jewish woman, had fallen into an unconscious state and required the support of a mechanical respirator and feeding tube to stay alive. She had given conflicting wishes for end-of-life care in her POAPC. One wish asked that she be allowed to die if she were ever to require mechanical support to stay alive with no reasonable prospect of resuscitation; the other wish authorized her attorneys for personal care to make all personal care decisions on her behalf.

Justice Brown accepted extrinsic evidence regarding Ms. Freidberg’s beliefs and wishes to resolve the conflict. “Thoughts on analogous end of life context” is one category of extrinsic evidence she considered.²⁷ Brown J. noted that Mrs. Friedberg had approved of the similar mechanical support measures used to keep her late husband alive, and had not expressed any wish that he be removed from life support. Brown J. found this consideration persuasive for the appellant’s argument that Mrs. Friedman had not understood the effect of the wish stated in the POAPC that she be removed from life support, and accordingly quashed the CCB order directing that she be so removed.

It is important to note that her support for her husband’s end of life care was just one part of Justice Brown’s extrinsic evidence analysis.²⁸ Other elements considered included Mrs. Friedberg’s devout religious beliefs²⁹; her purportedly limited command of English, which was the language of her POAPC³⁰; and the internal inconsistency of the POAPC itself.³¹ It would advise that relying solely on a person’s wishes in analogous end-of-life contexts would likely prove insufficient to prove a prior expressed wish on its own.

One may contrast the decision in Friedberg with the Consent and Capacity Board’s recent decision in SG (Re).³² In this case, SG, a devout Muslim woman, had been placed on a ventilator following a severe stroke. SG’s doctors unanimously determined that there was no chance of recovery, and recommended that she be removed from the ventilator before she suffered from an infection and died of organ failure or sepsis. SG was illiterate, and had not executed a POAPC. SG’s children argued that SG would not want to be removed due to her deeply held faith. SG prayed seven times per day, rigidly obeyed fasting rules during Ramadan, and often said “I will live by Islam and die by Islam.” They cited three instances in which SG expressed a desire to be kept alive as long as possible, including one in which she adamantly stated that she would want to be kept alive on a ventilator if she caught COVID-19 and could not breathe for herself.

The CCB panel determined that “when SG expressed her wish to be put on a ventilator if she needed help to breathe, or when she referred to Islamic doctrine to preserve life at all costs, she was expressing a general wish or philosophy of life, without any way of anticipating her eventual circumstances. SG’s wish was not precise, clear and specific to the medical conditions she would develop.” However, when the panel engaged in a “bests interest” analysis, the panel wrote that ‘the analysis turned to her best interests, paying heed to those very wishes, values and beliefs.” The Board ultimately concluded that the balance of evidence favoured not withdrawing the ventilator treatment.

Friedberg and SG indicate that religious beliefs, however devoutly held, seldom rise to the level of a prior expressed wish that is applicable in a set of medical circumstances. However, religious beliefs can play a significant role in the “best interest” analysis in the absence of a prior capable wish. Enshrining those beliefs in a written document, as was the case in Friedberg, can go a long way in swaying that best-interests analysis and ensuring faith-based wishes for medical treatment are upheld.

Disputes Over Rights to Decide

In Wawrzyniak Livingstone,³³ the plaintiff alleged that her father wanted everything to be done to keep him alive.  Instead, the doctors unilaterally signed a DNR.  As a result, the patient died.  The Court outlined what happened in paragraph 6 of its decision:

Dr. Livingstone was the physician most responsible for Mr. DeGuerre’s care when he was admitted to the internal medicine ward. Dr. Chapman was a physician on Sunnybrook’s rapid response team and he was responsible for performing follow-up assessments of patients discharged from the intensive care unit and attending to urgent call situations. On September 22, Dr. Chapman and Dr. Livingstone assessed Mr. DeGuerre, separately. Each concluded that he was close to death and would almost certainly not benefit from resuscitation which, they concluded, would only cause him suffering and harm. On the afternoon of September 22, the defendants decided not to offer CPR as a treatment option for Mr. DeGuerre, co-signed a “do not resuscitate” order, and placed it his on chart.

What about the patient’s right to decide?  What about the SDMs right to decide?  What about the legislative need to proceed to the Consent and Capacity Board when there is a disagreement?  This is what the judge concluded in paragraph 12 of his order:

12      For the following reasons, I conclude:

(a) The defendants did not fail to meet the applicable standard of care when they assessed Mr. DeGuerre on September 22, 2008, exercised their clinical judgment, and concluded Mr. DeGuerre was close to death and CPR would almost certainly not benefit him and would only cause suffering and harm.

(b) The defendants’ medical decision on September 22, 2008 not to offer CPR as a treatment option for Mr. DeGuerre and to write a “do not resuscitate” order to preclude the otherwise automatic initiation of CPR, and Dr. Chapman’s decision at Mr. DeGuerre’s bedside not to offer or administer CPR, do not fall within the meaning of “treatment” in the HCCA. The defendants did not fail to meet the applicable standard of care by failing to comply with the HCCA.

(c) The defendants did not fail to meet the applicable standard of care at common law by failing to obtain consent to their medical decision not to offer CPR as a treatment option for Mr. DeGuerre.

(d) The defendants did not fail to meet the applicable standard of care by not informing the plaintiff before writing the “do not resuscitate” order of their conclusion that he would almost certainly not benefit from CPR and that they intended to make a DNR order, or in the way they communicated with the plaintiff after making this order.

This case has been judicially considered a number of times with the focus on whether the doctor owes a duty of care to the SDM as well as the patient.³⁴ It remains to be seen if other courts follow this legal reasoning and adopt this Judge’s view that not offering CPR, contrary to the expressed wishes of the SDM, does not fall within the meaning of “treatment” in the HCCA.

IV.  Conclusion and Recommendations for Incapacity Planning

Lawyers seeking to protect clients’ desire that all steps be taken to preserve life face significant hurdles.

Ontario has a legislative framework that calls on medical professionals to obtain consent from a person who is capable and when the patient is incapable from their SDM.  However, there are those in the medical community who have/are seeking to circumscribe those statutory obligations and limit what they view as wrong decisions regarding dealing with end of life issues.  A case in point is the case of Wawrzyniak v. Livingstone,³⁵ described above.

In instances prior to brain death, the case law is clear that regardless of how many situations are covered by the Power of Attorney, doctors may persuasively argue that the patient could not have had any idea of the agony they would be experiencing and therefore whatever was listed in the power of attorney/statement of wishes were inapplicable.  In these circumstances the patient’s best interests i.e. quality of life must apply.  The Consent and Capacity Board and some judges have shown sympathy for this position.

Accordingly, in these instances we recommend that the power of attorney include a statement of wishes that reads something like this:

Statement of Wishes – The following are my wishes and desires with respect to the giving or refusing of consent to treatment. For greater  certainty, in  expressing  these wishes it is not my intention to fetter the discretion of my attorney in any way:

(a)   I strongly believe in the primacy of life. My wish is that all possible steps be taken to extend my life as long as possible unless the level of my  suffering  and/or  pain makes my situation a prolongation of dying. If my attorney decides to discontinue medical treatment, I desire, as much as possible, for it to be done in accordance with Jewish religious law (“halacha”).

(b)    Notwithstanding anything to the contrary in the Health Care Consent Act, 1996 (Ontario), or any successor legislation, and in the absence of my known wishes for unanticipated situations arising out of my personal care, it is my express wish that the judgment and decision of my Attorneys be honoured. I have absolute trust in the judgment of those appointed as my Attorneys who  know  me best and understand what my wishes would be in every instance. My wish in those end of life instances is that my Attorneys be permitted to make those choices necessary. I specifically do not want any doctor or other health practitioner to make those decisions on my behalf nor do I want the Consent and Capacity Board to determine what is in my best interest.

(c)    I confirm that I have discussed my wishes with my Attorneys and am confident that my Attorneys will act in accordance with those wishes and in my best interests.

(d)    I confirm that I desire my Attorneys to have broad  discretionary  powers  in acting on my behalf.

As of the writing of this blog, it is an open question whether a Power of Attorney for Personal Care or statement of wishes can safeguard a person of faith’s religious wishes once that person is brain dead.  That will only change if and when Ontario’s legislature legally defines death or when a new case with a more robust record is reviewed by the Court of Appeal for Ontario.