When the end is near, decisions regarding food are up to the substitute decision maker
In a recent article for the New York Times, Theresa Brown, a hospice nurse and author, described the story of an Italian grandmother who was caring for her dying husband. Her husband was long past the point of being able to talk or eat, and was close the death. Nevertheless, his wife wanted to continue feeding him. Her children disagreed:
“Her children, all grown, thought their mother was in denial, that she couldn’t accept her husband’s imminent death. They wanted her to stop trying to feed him, because he could no longer chew and swallow. They were concerned that he could choke, that any food he managed to get down was likely to make him feel worse, not better, because that’s how it goes when the body starts to permanently shut down. And they were right.”
As Ms. Brown describes it, sick people often refuse food and water. But even when loved ones know the health situation is dire, “not eating is so fundamentally at odds with living that it can be very hard to accept.” To Ms. Brown, the need for family members to feed their dying relative comes from our own understanding of the necessity of food. As she says, “At some point the dying no longer want food, but the living still want them to survive.”
When there is a dispute regarding the withdrawal of life support or feeding tubes, Ontario’s Substitute Decisions Act and the Health Care Consent Act applies. The legislation sets up a system of appointing and empowering substitute decision makers, allowing a person to designate someone to make these very difficult decisions when he or she is no longer able.
Despite the legislative scheme, these tragic disputes sometimes end up in court or in front of Ontario’s Consent and Capacity Board. In Rasouli (Litigation Guardian of) v. Sunnybrook Health Sciences Centre, the wife and family of Hassan Rasouli, a person in a persistent vegetative state, refused to take him off life support. Mr. Rasouli’s physicians were of the opinion that there was no realistic hope of medical recovery and argued that he be removed from life support. The matter eventually made its way to the Supreme Court of Canada.
In a 5-2 decision, the court sided with Rasouli’s wife, holding that the withdrawal of life support was a decision that fell squarely within the Substitute Decisions Act and the Health Care Consent Act. Thus, the decision was ultimately up to the substitute decision maker, even when medical experts disagreed with the course of action chosen.
Decisions made by the substitute decision maker are not meant to be made in a vacuum – the incapable person’s views and known wishes must be taken into consideration. While it is impossible to anticipate every situation, a person has the ability to set out his or her medical directives (such as wishes regarding feeding tubes and life support) in a power of attorney document. Doing so will better ensure that the grantor’s wishes are followed even after he or she is no longer able to communicate them.