There’s growing frustration among patient advocates over the depth of misunderstanding in the medical system regarding the prior capable wishes of patients who now require others to make their decisions for them.
Not only are substitute decision-makers unsure of how to handle these wishes, but the medical profession often ignores them or applies them without any input from the patient or the personal attorney and it sometimes does so completely out of context. So can lawyers do anything about it?
Ontario is unique in its treatment of the previously expressed wishes of people who become incapable of making their own decisions. The Ontario Health Care Consent Act provides that the wishes expressed while a person is capable are binding on an attorney and they don’t need to be in writing.
According to Oakville, Ont., estates and trusts lawyer Joanna Ringrose, this was a revolutionary change in the law. “Regardless of what instructions or wishes you’ve expressed in your power of attorney for personal care, your living will or other form of advance care planning, the subsequent verbal wishes of a capable person can override them.”
Ringrose recalls that at the time of the legislative changes, a lot of people were looking to formalize their wishes.
Concerns over the misuse of these directives came to light during the Law Commission of Ontario’s research and consultation phase in its capacity project. Judith Wahl, executive director of the Advocacy Centre for the Elderly, heard many horror stories during the preparation of a paper for the project. “All those prior capable wishes are grossly misused,” she says.
“The legislation deliberately called them wishes. They are meant to guide the substitute decision-maker when they are acting. They are required to follow them but they must interpret them in the circumstances, not take them literally.”
Wahl believes health providers often treat the decisions as though they’re consents. “It’s an indication of a person’s preference out of context: ‘If this happens I think I’d wish to do this.’ When they do actually get ill, many people change their minds.”
Her organization’s paper found that because of the increasing emphasis on encouraging patients to plan in advance, health practitioners have started to solicit patients’ wishes without giving them sufficient information or considering the ramifications. The health-care provider then applies these uninformed wishes without obtaining any interpretation from the substitute decision-maker or even a patient who’s still capable.
Wahl has seen what she says are bizarre cases where health-care facilities get people to sign directives to never transfer them to hospital. “What the patient means is that they don’t want to end up dying in hospital. Many people assume that for a temporary measure they would go to hospital to get treatment and then be returned to long-term care. One lady had fallen and broken her hip and the facility said, ‘She doesn’t want to go to hospital.’”
In another case, an elderly patient signed a non-resuscitation consent form. “In the context of his present condition, it made sense,” says Wahl. “He would not be a good candidate for resuscitation. But the physician thought it meant do not treat and took him off all his Parkinson’s medication.”
Jasmine Sweatman of Sweatman Law Firm in Oakville, Ont., believes there’s a disconnect in the communication with the medical profession. “What’s missing is respect: respect for the time and effort lawyers go through putting the wishes down on paper. They pay attention if it suits their purposes, depending on what stage the patient is at, rather than going to the substitute decision-maker for consent.”
The Advocacy Centre for the Elderly believes many health professionals don’t have the necessary education to understand their role. “Health organizations and professional organizations, including the Canadian Medical Association, give out directions that don’t reflect the law in Ontario,” says Wahl. “It’s a frustrating area.”
Given that misuse of prior capable wishes can arise in the health profession, what can lawyers do to counter it?
Alexander Henderson, a lawyer at Oiye Henderson in Toronto, believes the current practice is in a state of flux because the area is still evolving. “We have everything from lawyers taking video recorders into hospitals to failing to keep any notes at all. The proper practice is somewhere in between.”
Henderson believes many lawyers aren’t meeting the standard of care. “Obviously, as a lawyer, the more you have recorded the better. Take extensive notes and if people come in with a litany of handwritten wishes, take a copy.”
In Ringrose’s experience, clients rarely choose to talk to lawyers about their wishes, instead preferring to focus their time on the will and the power of attorney for property documents. Sweatman agrees. “The power of attorney is often an afterthought after the will, and between the two types — property and personal care — people want to focus on the money.”
Sweatman believes lawyers should be looking more at the philosophy that’s to guide the decision-maker rather than working through every permutation with a direction for all possible circumstances. “You never know what the situation is going to be or how far the medical world will have evolved. Remember, it might be 10 or 20 years later.”
Ringrose also believes detailed treatment plans aren’t always helpful. “Treatments change so quickly. You don’t want to pin the attorney down in case a new treatment becomes available.”
She believes the emphasis should lie on making sure decision-makers understand their role and ensuring the necessary discussions take place while the grantor is capable. “It might be helpful for the attorney to keep some record of those discussions, especially if the grantor is starting to deteriorate and decision-making is imminent.”
She also recommends lawyers remind substitute decision-makers that while they have an obligation to honour a grantor’s prior capable wishes, they also have a duty to continue to communicate, to the extent possible, with an incapable person and at least take into consideration the current wishes when determining what they believe to be their best interests.
Wahl advocates for careful drafting and employing the terminology of the Health Care Consent Act so health facilities don’t misconstrue it. “When drafting, lawyers need to be much more attuned to what happens in the health system. I think most lawyers would be horrified if they knew.” In the meantime, her organization is offering education in health facilities. “It is very interesting to see the depth of misunderstanding,” says Wahl. “It is a tough slog to get health professionals to understand.”