The family of a patient requiring life support struggles with painful decisions over life and death. The difficulty of these decisions is intensified when the patient’s substitute decision-maker (usually a close family member) and attending physicians disagree as to whether life sustaining measures should be withdrawn.
The family of a patient requiring life support struggles with painful decisions over life and death. The difficulty of these decisions is intensified when the patient’s substitute decision-maker (usually a close family member) and attending physicians disagree as to whether life sustaining measures should be withdrawn. The recent Supreme Court of Canada’s decision of Cuthbertson and Rubenfeld v. Rasouli (“Rasouli”), released October 18, 2013, has generated significant media attention, discussion, and debate on withdrawal of life support. On the surface, Rasouli may appear to stand for the principle that a substitute decision-maker has the right to determine whether or not a patient continues to receive support. These issues, however, are more complicated than they may appear. A critical examination of the Court’s decision is beneficial to understanding what it does (and does not) mean for patients and families contending with (or planning for) similar tragic situations.
Mr. Rasouli suffered severe brain damage necessitating life support from an infection that developed subsequent to surgery to remove a benign brain tumor. His attending physicians eventually reached the opinion that there was no prospect for recovery and anticipated a long progression of complications. The physicians sought to withdraw life support, without which Mr. Rasouli would most likely pass away. Mr. Rasouli’s wife and substitute decision-maker, Ms. Salasar, opposed the physicians’ decision to withdraw the life support, as it was her belief that Mr. Rasouli would wish to be kept alive. The physicians took the position that Ms. Salasar’s consent was not required for withdrawal of life support that does not provide any medical benefit. The issue before the courts was how this impasse should be resolved.
Ms. Salasar applied to the Ontario Superior Court of Justice for an order restraining the physicians from withdrawing life support. The physicians cross applied for a declaration that Mr. Rasouli was in a permanent vegetative state and that consent was not required to withdraw futile life support. The Ontario Superior Court of Justice granted Ms. Salasar’s application for an order that life support could not be removed without her consent. The order was upheld by the Ontario Court of Appeal. The physicians appealed to the Supreme Court of Canada (“the Court”).
The majority of the Court (five of seven judges) accepted the submissions of counsel for Ms. Salasar and held that Ontario’s consent legislation applied to the withdrawal of life support in Mr. Rasouli’s case, as withdrawal of life support was “treatment”, as defined by the legislation, requiring consent. Further, the Court held that any challenge to the refusal to consent was to be governed by the mechanisms provided for within the consent legislation. The decision of the Court validates and reinforces the existing practice in Ontario for dealing with similar issues of withdrawal of life support.
In light of the Rasouli decision, there has been significant media attention to issues including consent, substitute decision-making, and end-of-life decision-making. Families contending with similar issues may have more questions than answers, including:
- What is the framework for consent to medical “treatment” in Ontario?
- Is withdrawal of life support “treatment” that requires consent?
- What happens when a patient’s substitute decision-maker and attending physician disagree about the withdrawal of life support?
What is the framework for consent to medical treatment in Ontario?
Ontario has enacted legislation to govern consent to treatment for capable and incapable patients. This legislation, the Health Care Consent Act, 1996 (“HCCA”), was summarised by the Court in Rasouli as follows:
- The general premise of the HCCA is that medical treatment cannot be administered without consent;
- When a patient is incapable of providing consent (such as Mr. Rasouli), the HCCA provides a detailed scheme governing consent to treatment for incapable patients;
- The HCCA provides that a substitute decision-maker (“SDM”) must make treatment decisions on behalf of an incapable patient;
- The HCCA sets out a hierarchy designating who may act as an incapable patient’s SDM;
- The HCCA does not provide an SDM with unlimited discretion to grant or refuse consent on behalf of an incapable patient:
- Prior applicable wishes of an incapable patient, expressed while capable, must be followed, and
- If no such wishes were expressed, the SDM must make consent decisions based on the best interests of the incapable patient, taking into consideration specific factors, including the patient’s medical condition, well-being, values, and wishes;
- The HCCA contemplates disputes in relation to consent issues and provides for the resolution of such disputes through an independent body, the Consent and Capacity Board (“the Board”);
- The HCCA does not neglect the role of physicians and other healthcare providers in the treatment of incapable patients, for example:
- When there is a prior wish by the patient, the attending physician may ask the Board to find that the wish is not applicable to the patient’s current circumstances,
- If the physician believes that the SDM has not complied with the rules of the HCCA for giving or refusing consent to treatment, the physician may challenge the consent decision by application to the Board, and
- The physician’s views of what will medically benefit a patient are “critical” to the Board’s determination of the patient’s best interests.
Is withdrawal of life support treatment that requires consent?
The HCCA requires that consent be obtained for all measures that constitute treatment. Treatment is broadly defined within the HCCA to include care for a “health related purpose”. The Court in Rasouli held that withdrawal of life support in Mr. Rasouli’s situation constituted treatment which required consent and, as such, the HCCA governed the situation. This was not a case that decided, in the absence of legislation, who should have the ultimate say in whether to withhold or withdraw life support. The Court noted that the legislature has addressed the various conflicting interests of patients and families, physicians, as well as the public, within the HCCA. The Court viewed this as a case of statutory interpretation to determine whether the HCCA applied and, if so, what the legislation required.
The physicians argued that the withdrawal of life support was not treatment, as the continued life support in Mr. Rasouli’s case was not medically indicated. These physicians argued that to require consent for its withdrawal placed them in an untenable ethical position.
The Court held that treatment is not limited to procedures that are of medical benefit in the view of the patient’s caregivers. In Mr. Rasouli’s case, the withdrawal of the life support measures would involve a series of acts that serve purposes related to health, which may interfere with the patient’s body, are closely associated with the provision of palliative care, and impact patient autonomy in the most fundamental way.
The Court also noted that, pursuant to the HCCA, the Board has regularly exercised jurisdiction in previous cases where physicians proposed to withdraw life support. The Court held that the regime imposed by the HCCA was applicable to Mr. Rasouli’s case.
What happens when a patient’s substitute decision-maker and attending physician disagree about the withdrawal of life support?
The Court summarised the steps, pursuant to the HCCA, in cases such as Mr. Rasouli’s, where the SDM and attending physicians disagree on whether life support should be discontinued:
- The health practitioner determines whether in his or her view the continuance of life support is medically indicated for the patient;
- If the health practitioner determines that the continuance of life support is no longer medically indicated for the patient, he or she advises the SDM and seeks consent to withdraw the treatment;
- The SDM gives or refuses consent in accordance with the applicable prior wishes of the incapable person, or in the absence of such wishes on the basis of the best interests of the patient having regard to the specific factors in the HCCA;
- If the SDM consents to the withdrawal of life support, the health practitioner withdraws life support;
- If the SDM refuses to consent to the withdrawal of life support, the health practitioner may challenge the SDM’s refusal by applying to the Board;
- If the Board finds that the refusal to provide consent to withdrawal of life support was not in accordance with the requirements of the HCCA, it may substitute its own decision for that of the SDM and permit withdrawal of life support.
The Rasouli case stands for the premise that the withdrawal of life support may constitute treatment requiring consent, as in Mr. Rasouli’s situation. The consent is then subject to the provisions of the HCCA and may be challenged before the Board. This case does not stand for the proposition that families have the right to demand that a patient continue to receive life support.
In Mr. Rasouli’s case the Court did not make a determination as to whether life support should or should not be withdrawn. The Court directed the parties that the consent of Mr. Rasouli’s SDM was required to withdraw the life support and, if consent was refused, the physicians may apply to the Board in accordance with the HCCA.
The Rasouli decision is based on the provisions of the HCCA, which is legislation specific to Ontario. The Court’s decision is of limited guidance for similar situations in other jurisdictions, as legislation differs between jurisdictions and not all jurisdictions have applicable legislation (in which case the common law governs).
An aging population and continuing medical advances for the sustainment of life are making life sustaining and end-of-life decisions more commonplace. Explicit guidance would be beneficial for patients, families, physicians, and other healthcare providers. Uniform substitute decision making laws across Canada would be ideal, particularly in relation to the withdrawal of life support. At a minimum, existing legislation should provide more clarity for all those involved in the turmoil that accompanies life sustaining and end-of-life decisions. In jurisdictions without applicable legislation, further legislative guidance likely will be required to clarify the common law.
It is advisable to speak with a health law lawyer for representation before the Consent and Capacity Board or for assistance with understanding patient or familial rights pursuant to consent or substitute decision-making legislation.
Jill McCartney is a lawyer with Siskinds LLP. She practices exclusively in the area of health law with an emphasis on medical negligence. She has appeared before the Ontario Superior Court of Justice, Divisional Court, and Court of Appeal, as well as the Consent and Capacity Board. If you have questions about your legal rights please contact Jill McCartney at firstname.lastname@example.org or 519-660-7858.