About a month ago the case of Margot Bentley hit the national news. Ms. Bentley is an 82 year-old former nurse, whose work with dementia patients influenced her own decision to complete an advance directive in 1991.
According to news reports, her advance directive included the following wishes: “If at such a time the situation should arise that there is no reasonable expectation of my recovery from extreme physical or mental disability, I direct that I be allowed to die and not be kept alive by artificial means or ‘heroic measures’. ” In addition, her advance directive explicitly stated, “No nourishment or liquids.”
Eight years later, in 1999, Ms. Bentley was diagnosed with Alzheimer’s Disease.
In late 2011 her family decided that she had reached the point at which her quality of life would no longer be acceptable to her, so they asked the long term care facility where she is living in British Columbia to respect her wishes and stop providing pureed spoon-feeding. The facility refused the request, stating that they are obligated to provide the “necessities of life,” including food and fluids. The family is taking the facility to court and the hearing should take place this fall.
Like in Ontario, patients in British Columbia do have the legal right to express wishes in an advance directive, including the refusal of healthcare. So the legal battle will focus on whether oral feeds qualify as “healthcare” and, therefore, can legally be refused by Ms. Bentley. Part of that analysis will no doubt be a discussion about whether there is a legal distinction between refusing oral feeds and suicide, and whether honouring Ms. Bentley’s refusal would be considered assisted suicide.
The long term care facility’s position is that oral feeds are necessities of life, not healthcare, which would make Ms. Bentley’s request in her advance directive a request for assisted suicide (which they are not legally obligated to honour).
Personally I would be surprised if the BC court sided with the long term care facility in this case because there are solid ethical reasons for honouring a patient’s advance directive in a situation like this.
The reason why patients have the legal right to refuse treatment in Canada is because personal autonomy is one of our most cherished societal values, and an important part of exercising one’s autonomy is having control over what is done to one’s body. This is the source of the distinction between suicide and refusing life-saving or life-sustaining treatment; the former is an act undertaken for the purpose of ending one’s life, while the latter involves a decision to remove or refuse unwanted intrusion into one’s body.
In some contexts, voluntarily stopping eating and drinking (VSED) could be considered suicide – for example, in a patient who has the ability to eat and drink but chooses not to in order to hasten death. What is different about Ms. Bentley’s case, however, is that her advanced Alzheimer’s Disease has rendered her unable to maintain her own oral intake. A decline in both physical ability and interest in eating and drinking is a natural part of the progression of Alzheimer’s Disease and other dementias. Because she has reached the point at which she relies on others to feed her, feeding her against her wishes (as expressed in her advance directive) now represents an unwanted intrusion into her body. Thus, her refusal of that unwanted intrusion should be honoured as it would with any other unwanted intrusion.
In my experience, many health care providers struggle ethically with decisions to withdraw/withhold nutrition and hydration more than any other clinical decision. This likely has to do with various social and cultural meanings attributed to eating, as well as the association people draw between feeding patients and feeding infants. However, it is important to recognize that refusing oral feeding may be the only way for some patients to exercise what little autonomy they have at the end of life and to die with what they perceive dignity to be. Under the right circumstances, honouring this request can be the right thing to do.