Reasonable Doubt: Make sure your living will’s instructions are clear
“In the event that mental deterioration is such that I am unable to recognize the members of my family, I ask that I be euthanized”.
- Margaret Bentley, in her November 24, 1991, living will
While the Supreme Court of Canada waits to hear arguments in what has been termed the Death With Dignity case by the B.C. Civil Liberties Association, a very real example of it played out in our courts in mid December. Justice Bruce Greyell rendered a decision in that matter on Monday of this week.
Bentley, born in 1931, lived as full a life as anyone ever did. She was a nurse and realtor and raised four ambitious and successful children. She travelled extensively and was active as long as her body allowed her. As a nurse, she often dealt with people suffering from the normal human frailties that accompany age, including Alzheimer’s. She often expressed her wish that she not be kept alive by others or burden her family.
She went further. She executed two documents, one on November 24, 1991, and another that was found by family members in October 2011, in the event that she suffers from “extreme mental or physical disability” from which there is no reasonable prospect of recovery. She designated her daughter and husband as decision-makers on her behalf. She directed that she not be fed or watered or given mechanical help in breathing. She requested “aggressive palliative care” to keep her free of pain and distress, even if such care shortened her life.
However, in the second document, the creation of which was unclear, she also said that she would accept “basic care”. The court found that this second document was an expression of Bentley’s wishes, despite her signature not being recognizable to family members or having been witnessed and without any evidence as to her state of mind at the time when it was made.
Sadly, she was diagnosed with Alzheimer’s in 1999. In 2005, she entered a long-term care facility. She has not spoken since 2010 and her eyes rarely open. She occasionally moves her hand. She does not eat by herself. Rather, care aides hold up spoonfuls of food to her mouth.
Her daughter deposed in an affidavit that Bentley told her at least every week how she hoped that her living will would be honoured.
Tragically, this case pitted Bentley’s family against the care home she lived in, the provincial government, the Fraser Health Authority, and the Euthanasia Prevention Coalition. Her family sought a court order that Bentley not be given nourishment or liquids.
There is a lot to distill in this judgment. For the purposes of this article, the only issue I will address is the issue of who can make decisions about a person’s basic care, when that person cannot do so.
One of the most fundamental concepts in our modern democracy is that we are free to do whatever we want, so long as our actions do not harm others. However, people change their minds and, when someone is clearly unable to express a present desire as to how to live their lives, then how are we to decide what those present wishes are?
Can we do so through reference to previously expressed wishes when the person was of sound mind? On which side of doubt should we err?
The starting point is that we are presumed able to make sound decisions. This is found in the common law and in the Representation Agreement Act, the Healthcare (Consent) and Care Facility (Admission) Act, and the Adult Guardianship Act.
In this case, the court drew a distinction between healthcare and personal care (finding that feeding Bentley was personal care). In the case of healthcare, the procedure set out in the Healthcare (Consent) and Care Facility (Admission) Act must be followed when a person can no longer consent to treatment. Most importantly, this would be through an advanced directive (instructions in terms of the scope of treatment to accept) or a representation agreement (appointing someone to make decisions on one’s behalf in the event of incapacity).
As far as personal care is concerned, the court relied on the common law principle that capable adults can refuse to consent to personal care. However, what about an incapable adult, like Bentley, who has no personal guardian or representation agreement?
This is where her case may be novel. The court drew on the principles on personal autonomy and bodily integrity to conclude that, in such situations, the minimum that the law requires is that care providers consult with the adult’s friends and family, who are best placed to know what the adult would have wanted, and any written wishes the adult expressed while of sound mind.
In this case, the issue was moot, as the court found that Bentley was capable of deciding whether to eat by accepting food from care aides. Had that not been the case, then the judge found that the care home had properly consulted family members. Those family members were adamant that Bentley would not have consented to being fed. Despite that, the court placed significant weight on the lack of clarity in Bentley’s written wishes. One the one hand, she said she did not want to be fed. On the other, she said she would accept “basic care”. Surely, there is no care more basic than ensuring that one is fed.
Given the uncertainty, the court appears to have erred on the side of caution, which is justified and understandable given the stakes. To grant the family’s wishes would result in Bentley’s death, when that person is not in any apparent distress or discomfort as might be caused by maladies like cystic fibrosis or ALS. Surely, such a drastic order would require a clearly defined expression on Bentley’s part.
The lesson here? Get things on paper and make sure they are clear. I hate to use this column as a pulpit to promote lawyers, but a lawyer can best help you do this. There is probably no more important a decision a person can make beyond how they will spend their last years. Indeed, people spend lifetimes building careers, families, and bank accounts to be able to enjoy those years. Don’t blow it because you have not planned this one detail.
Regardless of your views on assisted suicide, make sure those who will be looking after you can honour your wishes when you no longer can.