Margot Bentley was a long-time nurse, working mostly with patients with dementia. She was determined not to die a slow, lonely, frightful death like so many of her patients.
So she planned ahead. Bentley wrote a living will, one that clearly stated that, when her time came, she did not want heroic measures taken to keep her alive. She also discussed the issue with her children, fully and openly, and they were in agreement.
Bentley did everything right. Yet today, the 82-year-old, who is in the final stages of dementia, is being kept “alive” against her wishes and those of her family. And the B.C. Supreme Court says that’s okay.
How could this happen?
When will the wishes of patients finally and rightfully take precedence over the paternalistic prurience of the medico-legal establishment? When will we stop torturing people in the name of legalistic hair-splitting and fully embrace essential principles such as having treatment choices and death with dignity?
Here’s what Margot Bentley wrote in her living will, when she was compos mentis:
“I direct that I be allowed to die and not be kept alive by artificial means or ‘heroic measures,’” she wrote eight years before her diagnosis. She also specifically stated that her caregivers should dispense “no nourishment or liquids” if she was in a condition where it was clear there was no reasonable chance of recovery.
To a layperson, that is crystal clear.
Not so, said the Maplewood Seniors Care Society, the institution where Bentley is being cared for. Not so, said the Fraser Health Authority, the legal body paying for her care (though it’s actually taxpayers like Bentley paying). Not so, said Justice Bruce Greyell of the B.C. Supreme Court.
The health-care institutions and the court said that Bentley must continue to be spoon-fed (or force-fed, as the family sees it). The patient, they argue, does not have the capacity to refuse food and water (something that patients at end-of-life do routinely) and the family cannot refuse on her behalf, despite the living will.
Why? There are several reasons given in the court ruling.
Justice Greyell said that the term “heroic measures,” while used commonly, has no legal meaning, so it’s not clear it includes feeding. In fact, he ruled that spoon-feeding is “personal care” not “health care.”
It is clearly established in law that health care cannot be provided without explicit consent. Personal care – in this instance, being offered food – is a different matter.
Therefore, Bentley’s legal representative, her daughter, cannot refuse feeding on her behalf, because it is not medical care per se. Refusing to nourish and hydrate her would constitute criminal neglect, the court ruled.
Further, Justice Greyell ruled that Bentley consented to personal care, to being fed, through her behaviour. This is the most contentious part of the case and the most disturbing.
Bentley, who lies in bed in a semi-vegetative state, is fed three times a day. A care worker puts a spoonful of puréed food to her lips and she eventually opens her mouth and the food is pushed in; then she swallows, often with difficulty. The family argues that she is doing so by reflex; the health-care institution caring for her argues that it is a demonstration of the will to live.
Obviously the parties did not see eye-to-eye. The family asked to move Bentley to another institution, where she would be “mercifully administered” medication until her death – as per her living will. (This approach is commonplace and legal; death is not hastened; medications are given to ease pain and suffering until a person dies naturally.) But the nursing home refused and threatened to place Bentley under guardianship to avoid her being moved. So the family sued.
The lesson here for everyone of a certain age – and their family members – is: Get to a lawyer and draft advance-care directives in painful detail. Then shop around carefully for the facility that will house you at end-of-life. Finally, tell your elected officials that this kind of nonsense is unacceptable, that right-to-die legislation is long overdue.
Let’s revisit what Bentley wrote in her living will, about what she wanted when she had no reasonable expectation of recovery from physical or mental disability:
“I would request the following instructions to be carried out:
A. No electrical or mechanical resuscitation of my heart when it has stopped beating; B. No nourishment or liquids; C. No mechanical respiration when I am no longer able to sustain my own breathing; D. No surgery.”
She thought of everything.
Bentley thought of everything except the fact that, in a health system where patients are not paramount, easing the discomfort of the bureaucracy takes precedence over ending the suffering of individuals. Margot Bentley has been denied a dignified death that she so longed for; she has been denied justice, and we are all the poorer for it.
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