When should a brain-dead person be permitted to die?

On July 4, 2011, the Toronto Star published an editorial titled “Keeping hope alive” It is about a family who wants to keep a family member who is in the hospital land who is in a vegetative state alive and not let the hospital withdraw life support so that the family member will die. A t the end of the editorial, I will add my own comments. Here is the article.

The family of Hassan Rasouli has been enduring a situation that any family can relate to. Their husband and father has been lying in Sunnybrook Health Sciences Centre for almost nine months, in what his doctors describe as a vegetative state. He has no hope of recovery, they say. Rasouli’s wife and children disagree: they see flickers of recognition when he blinks his eyes.

The question is: who decides? Who has the right to say whether Rasouli and patients like him be kept alive or allowed to die? Doctors or families?

Ontario’s Court of Appeal has decided that, in Rasouli’s case at least, doctors do not have the unilateral right to pull the plug — even if they believe that keeping him on life support serves no medical purpose. In the absence of comprehensive legislation governing end-of-life situations, the court’s ruling will guide the debate and tip the balance toward giving families a voice.

The facts

Rasouli has been in Sunnybrook since October, when he went in to have a benign brain tumour removed. Complications developed, leading to severe brain damage. He has been on a ventilator and feeding tubes ever since. His doctors wanted to remove life support and let nature take its course. His wife, Parichehr Salasel, who was a doctor in her native Iran, argued that giving up on him would violate his values and beliefs. “His look is full of meaning for me,” she says.

The case turned on the meaning of “treatment” under provincial law. The doctors argued that while patients have the right to refuse treatment, they do not have the right to insist on treatment that their physician believes is “medically ineffective or inappropriate.”

The judge who first considered the case decided in favour of the family, ruling that a “plan of treatment” under Ontario law includes the “withholding or withdrawal” of medical care — and therefore the family must consent to that. The appeal court agreed. Doctors may withhold treatment they believe to be useless in cases where death is not imminent, for example where more chemotherapy will do no good for a cancer patient. But withdrawing treatment (such as life support measures) that would result in a quick death is different. The family must have a voice.

This is wise given the pressures on hospitals to allocate scarce resources among many deserving patients. No one wants life-and-death decisions to be shaped by the need to cut corners.

Fortunately, sad cases like the one being experienced by the Rasouli family rarely result in such sharp face-offs with physicians. As the appeal court noted, “in most situations, life-ending decisions are worked out over time through a combination of patience, understanding, professional guidance and counselling.” When all that fails, however, patients and their families must have their voices heard. unquote
I have found the March 9, 2011 text of the Ontario Court of Appeal’s decision it made re this issue. I will later comment on it. Here is the pertinent part of the Court’s decision.

In October 2010, Hassan Rasouli (“Mr. Rasouli”) underwent surgery at the Sunnybrook Health Sciences Centre (the “Hospital”) to remove a benign tumour in his head. Following the procedure, Mr. Rasouli developed bacterial meningitis and ventriculitis. The infection caused severe and widespread brain injury as well as damage to the brainstem and the spinal cord. He has been in a coma since October 16, 2010 and is being kept alive in the Critical Care Unit by a mechanical ventilator and is being fed through a tube inserted (down his throat and) into his stomach.

Dr. Brian Cuthbertson and Dr. Gordon Rubenfeld are the doctors responsible for Mr. Rasouli’s treatment. Dr. Richard Swartz is a staff neurologist who has assessed Mr. Rasouli on five occasions. These physicians have formed the opinion that Mr. Rasouli is in a persistent vegetative state (“PVS”), that all appropriate treatments for Mr. Rasouli’s condition have been exhausted, that there is no realistic hope of medical recovery and that ongoing mechanical intervention will provide no medical benefit to Mr. Rasouli and may cause (him) harm. The doctors believe that if this current course of treatment continues, he will die slowly from one of the many complications detailed in the affidavit of Dr. Brian Cuthbertson related to being permanently confined to a hospital bed. The doctors also submit that any prospects for recovery decline markedly after three months and that Mr. Rasouli has been in a state of unconsciousness now since mid-October 2010.

The physicians met with Parichehr Salasel who is Mr. Rasouli’s wife, litigation guardian and substitute decision-maker under the Health Care Consent Act. Ms. Salasel was a physician in Iran until the family moved to Canada in April 2010.

The doctors informed Mr. Rasouli’s wife of the diagnosis and that they intend to discontinue the mechanical intervention and provide palliative care only to Mr. Rasouli. They have sought Ms. Salasel’s acquiescence to the proposed plan but she disagrees. There have been further meetings with members of Mr. Rasouli’s family and the doctors from the Critical Care Unit, neurologists, a neurosurgeon, nurses, a social worker and an ethicist. During the months since Mr. Rasouli has been in a coma, there have been a number of examinations by the Critical Care physicians and by the neurologist and various diagnostic tests administered. All the results are consistent with the clinical diagnosis of PVS which involves an irreversible loss of consciousness.

The Hospital also arranged for a second opinion with Dr. Jan Ween, a neurologist who had not been treating Mr. Rasouli. He concurred with the diagnosis and assessment done by the staff neurologist. He is of the view that Mr. Rasouli will never regain consciousness and that he runs a high risk of various complications if he is continued on life support intervention.

Ms. Salasel takes the position on behalf of her husband that it is consistent with the religious beliefs of Mr. Rasouli and his family that life be continued. Ms. Salasel maintains that it is the view of Shia Muslims that access to health care is a fundamental right and that a person is entitled to remain alive until all signs of life are gone. In other words, preventable death must be prevented.

The family says that they have seen Mr. Rasouli make certain movements and believe that he is aware of his surroundings and may be improving. They point to situations where a person in a minimally conscious state has been misdiagnosed as being in a persistent vegetative state and later recovers from unconsciousness. Therefore, they oppose the withdrawal of mechanical ventilation. Ms. Salasel submits that the proposed withdrawal of treatment decision should be taken to the Consent and Consent and Capacity Board (“CCB”) established under the HCCA to determine what is in the best interests of Mr. Rasouli. Ms. Salasel also argues that the Hospital is an agent of the state and may not breach Mr. Rasouli’s rights protected under the Canadian Charter of Rights and Freedoms.

The doctors take the position that they are not required to continue to provide treatment which is of no benefit to a patient and falls outside the standard of care. They say, in fact, that they are obliged to refrain from continuing such treatment even if the patient or his substitute decision-maker demands it where they deem the treatment (withdrawal of life-support) to be inhumane.

Counsel for the doctors submits that the physicians have applied recognized and authoritative clinical criteria to Mr. Rasouli’s situation and have confirmed the diagnosis that he is in a persistent vegetative state. This means that there is an irreversible loss of consciousness caused by brain injury and that he will not improve.

The doctors say they have attempted to take into account the family’s cultural and religious values. The physicians argue that the behaviour of Mr. Rasouli which may include movements of limbs, tearing, raising an eye-brow, blinking and other responses which the family may believe is evidence that he is gaining consciousness are really examples of non-volitional reflex responses which are consistent with the diagnosis of PVS. They see no indication that Mr. Rasouli has been misdiagnosed and say there are no symptoms which suggest that he is in a minimally conscious state.

Counsel for the physicians takes the position that, in accordance with the common law, (non legislative law) it is not necessary to take a doctor’s proposal to withdraw treatment to the Consent and Capacity Board as the physician is not obliged to offer treatment that will not be of benefit to a patient and where continuing the life-sustaining treatment falls outside the standard of care. The physicians apply for a declaration that the decision to withdraw life sustaining treatment from a patient in a persistent vegetative state is a medical decision and that the consent of the patient’s substitute decision-maker is not required either at common law or under the HCCA.

They also seek a declaration that the Charter does not apply to a physician’s decision to withdraw life sustaining treatment. Finally, they seek a declaration absolving them of criminal and civil liability for their proposed acts.

The Hospital takes the position that it is unnecessary and perhaps inappropriate for it to be a party to this application as it is not the Hospital making the diagnoses, proposing the treatment and obtaining the consent. The Hospital cannot be required to perform medical acts and cannot direct physicians to provide treatment that the doctors deem medically inappropriate. The Hospital is the setting in which the independent physicians practice medicine and use its resources.

It is the Hospital’s policy that the attending Intensive Care Unit physician is responsible for determining whether life support interventions are anticipated to be medically beneficial and whether a treatment lies within the standard of medical care. The policy also outlines how information is to be shared with the family, how a second opinion is to be facilitated and how a patient transfer be considered if a physician is willing to accept care and provide the treatment. All these steps have been done in Mr. Rasouli’s case. unquote

The Law

Treatment” under the Health Care Consent Act, S.O. 1996, c. 2, (the “HCCA”) includes Withdrawing Life Support. Section 18 states;

Consent must be obtained when a health practitioner proposes to administer a “treatment”. Therefore, if the withdrawal or removal of life support services is considered to fall within treatment as defined by the HCCA, health practitioners are required to obtain consent from a patient or their substitute decision-maker before withdrawing or ending life support.

In deciding what the incapable person’s best interests are, the person who gives or refuses consent on his or her behalf shall take into consideration;

(a) the values and beliefs that the person knows the incapable person held when capable and believes he or she would still act on if capable;
(b) any wishes expressed by the incapable person with respect to the treatment that are not required to be followed under paragraph 1 of subsection (1); and
(c) the following factors:

1. Whether the treatment is likely to,
i. improve the incapable person’s condition or well-being,
ii. prevent the incapable person’s condition or well-being from deteriorating, or
iii. reduce the extent to which, or the rate at which, the incapable person’s condition or well-being is likely to deteriorate.

2. Whether the incapable person’s condition or well-being is likely to improve, remain the same or deteriorate without the treatment.

3. Whether the benefit the incapable person is expected to obtain from the treatment outweighs the risk of harm to him or her.

4. Whether a less restrictive or less intrusive treatment would be as beneficial as the treatment that is proposed.

In the U.S., legislation regarding the treatment of incapable persons varies by state. Some states have enacted legislation which establishes surrogate decision makers in the event a patient becomes incapacitated and has not previously appointed someone to make decisions on their behalf. For example, in New York The Family Health Care Decisions Act at section 2994-d.1 sets forth, in order of priority, the persons who may act as a surrogate decision maker for an incapable patient. It grants the surrogate the authority to make all health care decisions for the patient that the adult patient could make for him or herself, subject to certain limitations.

The leading case in the United States on end of life decisions and consent is Cruzan v. Dir., Mo. Dep't of Health, (1990). In Cruzan the family requested the termination of life-sustaining treatments to their relative who was in a persistent vegetative state. Hospital employees refused to terminate life support without the authorization of the court.

The Supreme Court of the United States affirmed the decision of the Supreme Court of Missouri finding it was acceptable to require “clear and convincing evidence” of a patient’s wishes for the removal of life support. The court held that while individuals enjoyed the right to refuse medical treatment under the Due Process Clause, incompetent persons are not able to exercise such rights. Absent “clear and convincing” evidence that the patient desires treatment to be withdrawn, the court found the State of Missouri’s actions designed to preserve human life to be constitutional. Because there was no guarantee family members would always act in the best interests of incompetent patients, and because erroneous decisions to withdraw treatment were irreversible, the court upheld the state's heightened evidentiary requirements

In In the Matter of Earl N. Spring, (1980), the Massachusetts Supreme Judicial Court shifted the ultimate decision making authority from the court to the physician and family members. The court stated that in Massachusetts there is a preference for judicial decision making in cases involving difficult medical decisions for incapacitated individuals. The court summarized the following factors that should be considered in deciding the need for judicial approval of a desired medical treatment (including withdrawal of life-saving services:

1. the extent of impairment of the patient’s mental faculties;
2. whether the patient is in the custody of a State institution;
3. the prognosis without the proposed treatment;
4. the prognosis with the proposed treatment;
5. the complexity, risk and novelty of the proposed treatment;
6. its possible side effects;
7. the patient's level of understanding and probable reaction;
8. the urgency of decision;
9. the consent of the patient, spouse, or guardian;
10. the good faith of those who participate in the decision;
11. the clarity of professional opinion as to what is good medical practice;
12. the interests of third persons; and
13. and the administrative requirements of any institution involved.

In the Schiavo,case, a substitute decision-maker brought an application to the Sixth Circuit Court for Pinellas County, Florida, to have life support withdrawn from a woman who was in a persistent vegetative state. The woman’s parents opposed the application. The court ordered the removal of life support. The decision was followed by numerous motions and appeals to the Florida Second District Court of Appeal. The end result was that life support was withdrawn. This case illustrates a U.S. court taking a very active role in an end of life decision, and not leaving the issue of final consent to the patient’s doctors or substitute decision-maker.

There is very little case law in Canada on the meaning of the word ‘treatment’, and there is particularly little discussion of whether treatment can include a decision to cease treatment where a patient is terminally ill or has very little chance of survival.

However, the absence of a legal duty to perform and provide treatment supports the contention that at common law, doctors do not need consent to withdraw or withhold treatment.

While courts and judges do not have any expertise in making medical decisions, they do have expertise in resolving factual disputes and in making legal decisions. In the case of non-consensual medical decisions, be they decisions to provide, withdraw or refuse care or treatment, there is a role for the courts to play in making factual determinations and advising of the legality or illegality of disputed decisions before the patient is dead. The very suggestion that there is the option of a claim in negligence raises the fact that doctors can and, on occasion, do make mistakes. Further, many of the decisions that they make are qualitative and there is much room for individual disagreement on the correctness of the decision. Such findings would surely guide the doctor as she/he makes these decisions.

Conclusion of the Court of Appeal

Treatment” under the HCCA includes the withdrawal of life support. Therefore, doctors require consent when withdrawing life support in Ontario. End of life cases present very difficult considerations for all parties involved. It is clear from the evidence that the hospital, doctors and substitute decision-maker in this case all have as their priority the best interests of the applicant. We are fortunate in Ontario that our legislature has provided a statutory scheme to assist doctors and substitute decision-makers in determining when an incapable person should be removed from life support, complete with recourse to an independent, expert tribunal (Superior Court) in the event that a dispute arises in applying the best interests test. This statutory scheme will allow the applicant’s doctors to challenge the substitute decision-maker’s decision refusing consent to the proposed plan at the CCB. While no end of life decision can be easy, the process established by the HCCA provides consistency and ensures a full consideration of an incapable person’s best interests in cases such as this.

For the reasons outlined, I am of the view that the physicians’ proposal to end life sustaining treatment to Mr. Rasouli, a decision which is supported by the Hospital and opposed by Mr. Rasouli’s substitute decision-maker, must be referred to the Consent and Capacity Board. Pending the decision of the Board, the physicians are not permitted to withdraw mechanical ventilation and (are to) transfer Mr. Rasouli to palliative care.

Consent and Capacity Board

The Consent and Capacity Board is an independent body created by the provincial government of Ontario under the Health Care Consent Act. It conducts hearings under the Mental Health Act, the Health Care Consent Act, the Personal Health Information Protection Act, the Substitute Decisions Act and the Mandatory Blood Testing Act. Board members are psychiatrists, lawyers and members of the general public appointed by the Lieutenant Governor in Council. The Board sits with one, three, or five members. Hearings are usually recorded in case a transcript is required.

A person who wishes to dispute the finding of incapacity by the health practitioner may apply under section 32(1) of the HCCA to the Consent and Capacity Board (the ‘Board’) for a review of the health practitioner's finding that a person is incapable with respect to the treatment. The Board may confirm the health practitioner's finding or may determine that person is capable.(of making his own decision) Section 80 of the HCCA allows a party to appeal Board decisions to the Superior Court. The court may exercise all the Board's powers, substitute its opinion for that of the health practitioner's, or refer the matter back to the Board with directions for rehearing in whole or in part.

There is no charge to the participants for the services of the Board. The Board is publicly funded and requests that all participants assist in keeping costs down.
Each party may attend the hearing and invite anyone they want to attend. Family members and friends are also encouraged to attend. The presiding member will introduce everyone and explain how the hearing will work, who the official parties are and the order in which people will speak.

Each party may have a lawyer, call witnesses and bring documents. Each party and the Board members may ask questions of each witness. At the end of the hearing, each party will be invited to summarize and the presiding member will then end the hearing.

The Board after hearing the testimony of applicants, respondents and all witnesses, it will make a decision under the Health Care Consent Act and specifically the part of the Act that deals with consideration of the appointment of a representative to make decisions for an incapable person with respect to treatment. As I mentioned earlier, treatment can include a decision to cease treatment where a patient is terminally ill or has very little chance of survival.

In the Hassan Rasouli case in which he is the subject of this artcle, the Board will either appoint his doctor to be his representative and if that is so, then the doctor will remove all life-sustaining treatment which will result in the patient dying, or alternatively, appoint one of his family members to be his representative which will result in him being transferred to a special facility that cares with these kinds of patients.

My own comments

Removing the life support from a human being, even one who is in a vegetative state is obviously a traumatic event for all persons concerned. But there are factors that must be considered. The first is; is there any hope that the person’s mind will return to being normal again? The second is; would the person want to remain in a vegetative state for years? And the third is; must society (taxpayers) pay the millions of dollars spent to keep such a person on life support for years just to keep the person’s family happy?

Will Hassan Rasouli’s brain eventually return to its original state? Quite frankly, I doubt it. Bacterial meningitis infections are extremely serious and may result in death or brain damage, even if treated because bacterial meningitis infects the fluid in the spinal cord and also the fluid that surrounds the brain. The membranes in the brain then become inflamed. Advanced bacterial meningitis can lead to coma and death. At present, Mr. Rasoili is in a coma. Ventriculitis is the inflammation of the brain ventricles. They are a system of four communicating cavities within the brain that are continuous with the central canal of the spinal cord. The damages to his brain is undoubtedly damaged beyond repair.

Even if he were to come out of the coma, I doubt that he could think rationally or move his limbs. These kinds of patients who are in a vegetative state are unconscious because, although they are wakeful, they lack awareness and as such, are incapable of communication. They seem to be unaware of both their environment and themselves. Lying in a bed for twenty or more years in that condition would be too horrible for anyone to even imagine.

And finally, the cost of keeping someone in that kind of state. The annual cost of long-term care is estimated between $95,000 and $180,000. Who is going to pay those costs? Will it be the families who eventually stop visiting their loved ones and get on with their lives or the taxpayers in the community that the patient is residing in?

I can appreciate (as anyone can) the terrible grief that this unfortunate man’s family is going through but they have to come to terms as to what should be done for both their loved one and the taxpayers of their community.

As to the religious aspect of what they are facing, I don’t believe that it is pertinent. Even if their religious belief prohibits them from ending a life, they have to come to the realization that all life comes to an end sooner or later but in in some cases, it would be more merciful that the end comes sooner. Surely a brain dead patient with no potential for life, relationships or consciousness should be viewed as dead as per the standards of the Bible or the Qur’an.

The only concern I have is the method of permitting this unfortunate man to die. Generally, they remove the feeding tube which then results in the patient dying of thirst and/or the ventilating tube which results in him suffocating to death. I don’t know if such a patient would be aware of dying of thirst or suffocating to death but the thought is frightening.

I would rather that such a patient be given an overdose of morphine. That would bring about the cessation of the heart function and death would come very quickly.

It is unfortunate that this unfortunate man did not have a ‘living will drawn up. If he didn’t want to linger on, he would have said so in his will. No one can override such a decision made by someone who puts it in his living will.

When I was practicing law, a number of my clients asked me to draw up living wills for them and at their requests after consulting with me, they had me place a directive in the will that if after being examined by two doctors and the doctors concluded that there is no hope of them ever being revived from the brain damage they have suffered from, then thirty days after their doctor’s examination, they should be permitted to die. My wife and I both have such wills and such directives in our living wills.

Permitting severely brain-dead people to continue to live is not prolonging their lives. It is their deaths that are being prolonged. That certainly doesn’t seem right to me.