Most people are unaware of the rules for making substitute healthcare decisions for their incapable loved ones. The possibility that medical resources such as ventilators may be limited due to COVID-19 cases can only add to the stress and burden of substitute decision-making. Quarantine restrictions in health facilities have left substitute decisions makers (SDMs) without in-person access to the patients they are supposed to be making decisions about. All of this is occurring in circumstances where health workers need to obtain decisions about treatment faster than ever.
Health Care is within provincial jurisdiction but none of Ontario’s emergency orders to date, have modified the laws for making substitute decisions. What follows is a brief outline of the rules:
- There is no treatment without consent. For most health-related interventions, consent needs to be in accordance with the Health Care Consent Act, 1996 (HCCA). There is an important exception to this rule in the case of some emergency circumstances (CPR for example).
- There is no substitute consent for a capable person. Health practitioners must first determine that a patient is incapable of consenting to the proposed treatment before seeking consent from the SDM. Until that happens, consent must be obtained from the patient directly.
- Capacity means mental capacity not physical limitations or communication difficulties. Mental capacity is a complex issue and defined, for treatment, in the HCCA and Starson v. Swayze among other cases. It requires the ability to understand relevant information and the ability to appreciate the foreseeable consequences of the treatment decision being made.
- There is a hierarchy of substitute decision-makers. If a higher ranked decision maker is unwilling or unavailable, the next equally ranked or lower ranked decision maker should be asked. The ranking is:
- A court appointed guardian of the incapable person, if the guardian has authority to give or refuse consent to the treatment.
- The incapable person’s attorney for personal care, if the power of attorney confers authority to give or refuse consent to the treatment.
- The incapable person’s representative appointed by the Consent and Capacity Board to give or refuse consent to the treatment.
- The incapable person’s spouse or partner. “Partner” includes either of two persons who have lived together for at least one year and “have a close personal relationship that is of primary importance in both persons’ lives”.
- A child or parent (subject to some exceptions) of the incapable person.
- A parent of the incapable person who has only a right of access.
- A brother or sister of the incapable person.
- Any other relative of the incapable person (what this means in the era of worldwide networks of DNA testing for family members has yet to be determined).
- The Public Guardian and Trustee is the decision maker of last resort or if equally ranked decision makers do not agree.
- Doctors propose treatment and SDMs consent to the treatment or refuse. Patients and SDMs do not direct treatment, this is the health practitioner’s job. SDMs are presumed to be aware of the various factors necessary to decide an incapable patient’s treatment such as the person’s values and beliefs. SDMs are obliged to weigh these factors and decide on the treatment in accordance with the principles for making substitute decisions.
- The principles for making substitute decisions are defined in the HCCA. The principles have their own hierarchy:
First If there are prior capable wishes that are applicable in the circumstances, the treatment decision must be in accordance with those wishes unless the Consent and Capacity Board granted permission to depart from wishes.
Next If there are no prior capable wishes, the decisions must be made in accordance with the incapable person’s best interests, which must consider:
(a) the person’s values and beliefs;
(b) the person’s current incapable wishes; and
(c) various clinical factors such as whether the treatment is likely to improve the incapable person’s well-being or prevent deterioration.
- Health Practitioners are required to provide information to the SDMs before seeking consent. The HCCA outlines the relevant information that must be provided to SDMs as: the nature of the treatment; the expected benefits; the material risks; the material side effects; alternative courses of action; and the likely consequences of not having the treatment. The Ontario Court of Appeal (at paragraph 23 of (A.) v. Benes) has also confirmed that the information must include an explanation of the principles for making substitute decisions.
Substitute Decisions must only be based on the incapable person wishes, values and beliefs and patient’s condition. There is no legal basis for an SDM to make treatments decision based on wider concerns such as the availability of limited health care resources. Those difficult ethical and policy issues may yet be tackled by the Ministry of Heath, the College of Physicians and Surgeons or other medical associations but would only add to the already difficult burdens of being an SDMs. It goes without saying, but hopefully every patient will get the medical treatment that he or she needs.