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Conflict at the end of life: what happens when doctors and families disagree?


Informed consent to medical treatment is one of the foundational pillars of Canadian medical law and the practice of medicine. Before administering a course of treatment, health care professionals are expected to ensure that their patients understand the benefits and risks of each option and that they voluntarily agree to undergo the chosen therapy.

In cases where patients cannot provide informed consent (for example, because they are unconscious) and they have not expressed a prior wish regarding treatment, health care professionals are expected to seek consent for treatment from a patient’s designated substitute decision maker (usually a close family member).

Most often, health care teams and substitute decision makers work effectively together to agree on a course of treatment. But sometimes, the relationship between a substitute decision maker and a health care team breaks down.

The case of Hassan Rasouli

The case of Hassan Rasouli is one of these rare conflicts between health care professionals and substitute decision makers. Mr. Rasouli has been unconscious for over three years, kept alive in Sunnybrook hospital’s intensive care unit on a mechanical ventilator.

Mr. Rasouli’s doctors believe that he has no chance of a meaningful recovery of brain function. They therefore feel that keeping him on life support is “medically futile” and violates their professional ethic to not harm their patient.

Mr. Rasouli’s designated substitute decision maker (his wife, Parichehr Salasel), believes that her husband’s religious beliefs mean that he would want to be kept alive if he was capable of making the choice himself. She therefore has not provided consent to the withdrawal of life support.

Mr. Rasouli’s case was taken to the Ontario Superior Court in early 2011, and eventually to the Supreme Court of Canada to decide whether his doctors needed his substitute decision maker’s consent to withdraw life support, and if so, to whom they should appeal her decision. The Supreme Court released its decision on October 18th, 2013.

Headlines proclaiming “Family should decide on life support” have led some Canadians to believe that the Supreme Court ruling means that in cases of conflict between health care professionals and an unconscious patient’s family, it is the family who always has the final say. However, this is not actually the case, says Joan Gilmour, a professor at Osgoode Hall Law School.

While the Supreme Court did rule that doctors must secure consent from a substitute decision maker before withdrawing life support, families do not necessarily have the final say. Instead, Gilmour explains that the court ruled that if health care professionals believe a patient’s substitute decision maker is not acting according to his or her legal duties under the Health Care Consent Act, Ontario law directs them to apply to the Consent and Capacity Board to review the substitute’s decision.

Legal duties of a substitute decision maker: prior wishes and best interests

If a substitute decision maker knows of a specific prior wish the patient made while capable that applies to their current situation, then the law requires the substitute to give or refuse consent in accordance with that wish. For example, if a patient had specifically told her daughter that if she had no hope of recovery she would want to be “unplugged from the machines”, then the law would require her daughter to give consent for the withdrawal of life sustaining treatment, regardless of her daughter’s own beliefs or preferences.

However, often patients have not made specific wishes known to their family members. When a substitute decision maker does not know of a specific wish, the law directs them to make decisions based on the patient’s best interests.

The standards for making a decision based on best interests are laid out in section 21 of the Health Care Consent Act. There are several factors that substitute decision makers are required to consider:

1. The patient’s values and beliefs.

2. Any wishes they expressed that were not specific to the situation.

3. The effect of a proposed treatment on a patient’s well being, the benefits of the treatment versus the harms, the patient’s chance of recovery, his or her chance of deteriorating, and whether an alternative treatment would be more appropriate.

Most often, conflict between health care professionals and substitute decision makers in end of life cases like Mr. Rasouli’s are the result of disagreements about what is in a patient’s best interests. These often arise either because of conflicts between patients’ values and beliefs versus their medical well-being, or because of disagreements between doctors and families about the patients’ odds of recovery.

In these rare cases of conflict, doctors in Ontario can apply to the Consent and Capacity Board, who will determine whether the substitute decision makers are acting according to their legal duties laid out in the Health Care Consent Act.

The Consent and Capacity Board

The Consent and Capacity Board is an independent provincial tribunal that adjudicates cases involving consent to medical treatment. It was established in 1996 under the Health Care Consent Act to replace Ontario’s Psychiatric Review Boards.

The Board was established to “provide fair, timely, effective and respectful hearings that balance legal and medical considerations while protecting individual rights and ensuring the safety of the community.”

Over 80% of the cases heard by the Board involve involuntary admission to a psychiatric facility or a review of a patient’s capacity to consent to medical treatment. Cases of conflict between health care practitioners and substitute decision makers made up less than 1% of the cases the board heard in 2012/2013, according to Isfahan Merali, acting legal counsel for the Board. Of these, only a few are end of life cases.

The Board has 130 members across Ontario, who are appointed by the Lieutenant Governor in Council. The Board is composed of a roughly equal mix of psychiatrists, lawyers and members of the general public. The Board does not currently include any critical care doctors.

Decisions made by the Board are a matter of public record and are posted online. (Links to cases specifically involving end of life can be found here.)

End of life hearings

If a doctor believes a substitute decision maker is not acting in accordance with their legal duties under the Health Care Consent Act, the doctor may initiate a Consent and Capacity Board hearing by filling a “Form G” application.

Hearings are usually held in the facility where the patient is receiving treatment. Cases must be heard within seven days of the application, though cases involving patients in an intensive care unit are usually heard within 24 hours. Each party can choose to be represented by a lawyer.

Cases involving substitute decision makers are heard by a panel of three members: one psychiatrist, one lawyer and one member of the public. (Some recent cases have been heard by one lawyer and two members of the public, according to Merali.)

At the hearing, the onus is on the doctor to prove her or his case on the preponderance of evidence. All parties present evidence and call witnesses to support their case. Each party and member of the Board has the opportunity to ask questions of witnesses. A mock Board hearing for an end of life case can be viewed here.

After the hearing, the Board meets in private to discuss the case and reach a decision. The Board will issue a decision within one day.

In cases where the Board finds that a substitute decision maker has acted according to their legal duties, it will dismiss the Form G application made by the health care team. In cases where it finds that the substitute decision maker has not acted according to their legal duties, the Board will order the substitute decision maker to give their consent to the proposed treatment (or withdrawal of treatment).

Any party may appeal the Board’s decision to the Ontario Superior Court of Justice.

The Board has heard 30 end of life Form G cases since 2005. The Board has ordered substitute decision makers to consent to the plan of treatment proposed by doctors in 23 of these 30 cases.

Board decisions in end of life Form G cases have been appealed 11 times. All but one of these appeals was initiated by a substitute decision maker after being ordered by the board to give consent. Only one of these appeals has been successful (three are pending in the courts).

Independent tribunal has advantages over the courts

Many experts agree that an independent tribunal can be a better way of settling conflicts about substitute decision making than courts of law.

“Probably the biggest advantage is speed,” says Robert Sibbald, a bioethicists at London Health Sciences Centre. Where it can take months to get a court date, Consent and Capacity Board decisions are made within days. Sibbald also notes that the Board’s practice of holding hearings in the facility where the patient resides – rather than in a court room – often makes the process more accessible for everyone.

Mark Handelman, a lawyer who used to sit on the Board and who now litigates Board cases for both families and doctors, says another advantage of the tribunal system is that it allows a single group to develop expertise in end of life cases.

Indeed, in its decision in Cutherbertson v. Rasouli, the majority of the Supreme Court of Canada noted that over the past 17 years, the Consent and Capacity Board has developed a strong track record in handling cases like Mr. Rasouli’s. Handelman agrees with the Court, saying “The Board has now adjudicated more end of life cases than all Canadian Courts combined.”

The critical care doctors Healthy Debate spoke to for this story think that an independent tribunal could be the best forum to decide some of these cases. Among these was Gordon Rubenfeld, one of the doctors at Sunnybrook who brought Mr. Rasouli’s case before the Supreme Court. Rubenfeld explains that “I have no doubt that a fair and transparent procedural resolution to some of these intractable conflicts is the right answer.”

Yet while these experts agree that an independent tribunal could be a better option than the courts, some of them are concerned that Ontario’s Consent and Capacity Board is currently not be set up properly to handle these difficult cases.

Concerns over lack of expertise

A common concern among these experts is that the membership of the Consent and Capacity Board was established in order to deal with cases of involuntary psychiatric treatment. As a result, while the board has substantial expertise in psychiatry and law, none of its members have significant expertise in critical care medicine.

Research findings suggest many doctors who have applied to the Consent and Capacity Board feel that there is a lack of knowledge on behalf of the Board about the intensive care unit and the gravity of these end of life cases.

“Keeping some of these patients alive, it’s cruel… it feels like torture…” says one critical care doctor who asked not to be named. “I don’t think people who haven’t worked in an [intensive care unit] understand that,” he explains.

Handelman believes this perception has led many doctors to not apply to the Consent and Capacity Board, even when they believe a substitute decision maker is not acting in their patient’s best interests. “I think that if doctors knew their position would be understood by the Board, they would be more likely to bring cases forward,” he says. “This is important. We need doctors to participate more in this process.”

A critical care doctor was appointed to the Consent and Capacity Board in 2008 as a public member to help hear cases like these. However, the doctor was in active practice and so was not able to attend hearings due to conflicts with her clinical schedule.

Handelman notes that most psychiatrists who serve on the board have retired, and so are much more able to attend hearings than practicing doctors who are caring for patients. A similar model for critical care could help the Board effectively understand and balance the benefits and burdens of continuing life support when there is no reasonable chance of recovery.

Inconsistencies and delays

Rubenfeld also believes the Consent and Capacity Board process for end of life cases could be improved if the Board was guided more clearly by precedent. “It would help if when the Board ruled one way in one case, that they would rule the same way in another unless there was a compelling reason to make an exception,” he says, “but it doesn’t seem like that’s the case right now.”

Rubenfeld’s concern finds support in the evidence. In a review of recent end of life Consent and Capacity Board decisions, researchers found cases where the Board had deviated from precedent. In one such case, the Board “seemed to indicate that a patient’s religious values were paramount in determining best interests;” a position in conflict with previous cases and the Health Care Consent Act, which includes values and beliefs as part of best interests, but does not prioritize them over other parts, such as medical well being.

Another common concern is that while the initial hearing is held quickly, the process can be delayed substantially through appeals. “Appeals can take months,” says Sibbald, “but decisions in the intensive care unit often need to be made in hours, not months. Delaying treatment plans while an appeal drags on is bad for patients.”

Sibbald believes the appeals process is essential to a fair and transparent process, but suggests that a special expedited appeals process could be set up for cases involving patients in an intensive care unit.

Looking forward

Cases like Hassan Rasouli’s are very rare. But when they do arise, doctors and families need a clear, fair and efficient process for resolving conflicts. The Supreme Court of Canada has ruled that in Ontario, the Consent and Capacity Board is responsible for this process. While experts agree there is value in an independent tribunal, there is also broad agreement that the process could be improved.

Should Ontario appoint critical care doctors to the Consent and Capacity Board?

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4 comments

  1. Kathleen Finlay | Patient Protection Canada

    The question posed in the title of the piece is much broader than what is discussed in the article and certainly than what is being asked at the conclusion in respect of the composition of the Consent and Capacity Review Board.

    End-of-life decisions have to be more than when a doctor decides life ends. In any thoughtful discussion about that subject, surely the views of patients and families need to be canvassed as much as those of doctors and the Sunnybrook position, both of which I experienced first-hand in connection with the hospitalization of my mother. That was three years ago. Had I listened to her care team at the time, I would not have had the pleasure of enjoying lunch with my mother today, hearing her lovely voice and seeing her delight in watching the comings and goings of a family of finches on the eve of her 92nd birthday. Sometimes even esteemed practitioners like Dr. Rubenfeld, who assured me that my mother would never leave the hospital alive, get it wrong.

    While most doctors are guardians of life, we need to recognize that some can also be thieves of hope. My own experience, and the discussions I have had with many families over the years, persuade me that there needs to be more, not less, oversight of the actions and decisions of doctors so that the primacy of their position and their asymmetrical relationship with patients and families are not elevated any more than they already are.

    Some further thoughts on the subject are set out in a recent piece I wrote in The Huffington Post, which can be viewed on Patient Protection Canada’s website at
    http://www.patientprotection.ca/dnr-decisions-need-rules-to-protect-patients-and-families/

    • Linda B

      I read your comments and, as well, your piece for Huffington Post and you make some good points. However, as someone who has physically been present at literally hundreds of bedsides in the ICU I assure you, it is an expensive, costly and painful way to pass the remaining days of your life.

      So yes, while each case should be dealt with on its individual merit, statistics should and do have a place in the discussion. Individuals with comorbid conditions over hte age of 80 who have a cardiac arrest due to something other than a cardiac problem rarely survive to hospital discharge, and even more rarely, do they survive with the same quality of life. CPR certainly saves young lives, and buys valuable time to defibrillation. Unfortunately, when administering CPR to a frail elderly person, it is demoralizing quite frankly and has been the cause of more personal anguish than successful resuscitations. In fact I do not have a single personal example of a person over 80, who I watched or performed CPR on surviving to hospital discharge. And so while I am certainly pleased that your mother has done so well, I suspect there is more to the story.

      I, however, much like you, believe strongly that this conversation needs to take place MUCH more frequently, and with skilled health care providers – and in times of wellness, not significant crisis. And so I applaud your efforts to encourage the conversation.

      %featured%But when I recommend against CPR in the elderly, or anyone with a disease process that has a known downward trajectory, I hope you will not think me a used car salesman. I’m not doing it to shorten their life, but to prevent pain and anguish at the end.%featured%

  2. Gerald Goldlist

    My comment is from a purely practical point of view. Sadly with the limited resources (life supporting machine) in the Canadian health system at this time, the keeping a “hopeless” patient alive with these resources means that someone else with better prospects for living a productive life may die waiting for the equipment. As our society ages the number of “hopeless” cases will increase and those waiting for these limited resources will die.

  3. Linda Murphy

    Part of the conflict seems to centre on how much of the weight should be given to medical versus other components of the patient’s best interests. Given this, perhaps the addition of geriatricians and/or geriatric psychiatrists should also be considered for cases involving a growing portion of our population.

    In other arenas, lay/community or family perspectives are incorporated in decisions – perhaps a social worker might bring add a useful dimension to these discussions.

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