Unbeknownst to many caregivers, there is a legal context – a complicated web of laws – that govern health care decision-making.
Many caregivers are family and friends who play a supportive role, but have no legal authority to make decisions and few, if any, legal obligations. However, some caregivers are also “substitute decision-makers” (SDMs for short), an umbrella term for individuals with legal rights and responsibilities in relation to making decisions for another person.
When must treatment decisions be made by substitute decision-makers?
SDMs are called into action only if a person is “incapable” of making certain decisions (for example, consenting or refusing to consent to radiation). It is not age or diagnosis that makes a person incapable but rather a person’s ability to understand the information relevant to making a decision about the proposed treatment; and the person’s ability to appreciate the reasonably foreseeable consequences of making a decision or lack of decision. Capacity is presumed unless there are reasonable grounds to believe otherwise. When people are capable of making all or some of their own decisions, they are entitled to make those decisions however they see fit – even if the decision appears to be foolish or unwise.
This is why, earlier this year, an 11 year old with cancer was allowed to make the decision to stop chemotherapy against medical advice (as I have discussed further here).
Who gets to be a substitute decision-maker?
Pursuant to the Health Care Consent Act, the SDM is selected based on whoever comes first in the list below:
- Guardian of the person (appointed by Court)
- Attorney for personal care (appointed via Power of Attorney for Personal Care)
- Personal representative (appointed by the Consent and Capacity Board)
- Spouse or partner
- Child or parent or Children’s Aid Society
- Access parent
- Brother or sister
- Any other relative
- Public Guardian and Trustee
In addition to being the highest ranked person on the list, SDMs must also meet the following criteria:
- “capable” with respect to the decision
- at least 16 years old (except for parents under 16 making decisions for their own child)
- not prohibited by court order or separation agreement from having access to the incapable person or giving or refusing consent on his or her behalf
- available (which is about ability to be reached rather than physical proximity)
- willing to assume the responsibility
If the above criteria are not met, the SDM is the next highest-ranking person(s) on the list.
How must substitute decision-makers decide?
Consent obtained from SDMs must be “informed consent” just as it would otherwise have been from the person to whom the treatment relates. When making a decision, SDMs must comply with legal principles for giving or refusing consent.
Principle 1: Prior Capable Wish
When making a treatment decision for another person, the SDM shall give or refuse consent in accordance with a “prior capable wish” of the person, which means a wish applicable to the circumstances that the person expressed while “capable” and after attaining 16 years of age. The wish might have been communicated orally, or recorded in a formal document like a Power of Attorney for Personal Care. In following the wish, SDMs may have to provide consent – or refuse to consent – even if the decision is contrary to how they would decide for themselves.
Sometimes a “prior capable wish” is ambiguous; it is not clear if the wish is applicable in the circumstances; or it is not clear if the wish was expressed when the person was “capable”. In these circumstances the SDM has the right to apply to an independent health tribunal called the Consent and Capacity Board to go through a legal process and ultimately obtain directions. This can reduce the liability of the SDM and provide relief from the uncertainty of making the wrong decision.
Principle 2: Best Interests
If no prior capable wish is known, or it is impossible to comply with the wish, the SDM must act in accordance with the person’s “best interests” (a legally defined term).
Interestingly, not all of the criteria under “best interests” relate to a person’s clinical condition. One criterion that must be considered in a “best interests” analysis is the person’s values and beliefs that the person held when “capable”. This criterion can arise in situations in which religious beliefs involve opposition to certain medications or procedures; a notable example being a person of the Jehovah’s Witness faith who is opposed to blood transfusions.
Values and beliefs can also be more abstract, such as valuing autonomy and independence over other important considerations. In the well-known Rasouli case, the patient’s SDM (his wife) argued that “sustaining life as long as possible accords with the religious beliefs of Mr. Rasouli, and that as a result he would not have consented to the removal of life support”.
If a physician believes the SDM is not complying with his or her legal obligation to decide in accordance with the patient’s best interests, the physician can bring the matter to the Consent and Capacity Board, which can substitute its opinion for that of the SDM (if he or she failed to comply with the law).
Making treatment decisions is just one area of decision-making in which SDMs may be required to act. SDMs can also be called upon to make decisions about property, long-term care or disclosure of personal health information (to name a few).
Caregivers who find themselves in the role of SDM should become familiar with the applicable laws to ensure they have authority to act; that they are complying with the law; and that they are not exposing themselves to any unwanted liability.
Disclaimer: This article provides only an overview of the law and should not be relied upon as legal advice.
Lisa Feldstein is the principal lawyer at Lisa Feldstein Law Office Professional Corporation. She holds a B.A. from the University of Guelph and a J.D. from Osgoode Hall Law School. Lisa practices in the area of Family Health Law™, which includes providing advice on reproductive law and other health law matters. Lisa previously practiced health law with Canada’s largest health law boutique providing advice to hospitals and other health care organizations. She has also worked at two of Toronto’s teaching hospitals in the areas of research ethics and mental health law.
Lisa has been widely published, including in the Canadian Journal of Family Law, Hospital News and the National Post. She has presented on reproductive law issues at numerous institutions including the University of Toronto, Mount Sinai Hospital, Markham Fertility Centre and the 519 Church Street Community Centre. Lisa’s reproductive law practice is focused on drafting surrogacy and gamete donation agreements, performing declarations of parentage, and advising fertility clinics on issues such as consent, privacy and research. Lisa has been teaching negotiation at Osgoode Hall Law School since 2010. She is an executive member of the Ontario Bar Association health law section and a director on the board of BALANCE for Blind Adults.