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A living will just makes things easier

Let me begin with a story. Elaine was a resident at a nursing home in Toronto. She was 91 and lived with severe dementia. It was doubtful she recognized her two daughters, Heather and Susan. The family had authorized DNR (do not resuscitate) orders.

Let me begin with a story.

Elaine was a resident at a nursing home in Toronto. She was 91 and lived with severe dementia. It was doubtful she recognized her two daughters, Heather and Susan. The family had authorized DNR (do not resuscitate) orders.

The nursing home called Heather to notify her Elaine was being transferred to hospital. This was being done because it was believed Elaine had suffered a stroke. Heather was not asked if her mother should be transferred. She was told.

Over a course of five or six days, Elaine had a CT scan that confirmed the stroke, was examined by a neurologist and had swallowing assessments. There was no treatment possible for the stroke. Ultimately she was transferred back to the original nursing home.

The family requested a meeting to review the goals of treatment. Measures to keep Elaine comfortable were chosen. There would be no feeding tube. When Elaine died, the family was treated with compassion.

Elaine’s care at the end of her life raises some issues.

Why was Heather told, as opposed to asked, regarding transfer to hospital? What was the purpose of the transfer? If the transfer were about Heather, what treatment could she have possibly received knowing her history?

Why did the family have to request the meeting to review goals of treatment in the nursing home?

A much more preferable course of action would have been to have had conversations about advance directives and the goals of treatment as Elaine’s dementia progressed in the nursing home.

This works effectively when done on an elective basis. It is hard to do well in the midst of a crisis.

Staff and physicians should initiate the conversations at the right time and offer guidance. In most instances, families value and rely on the advice of health-care professionals.

What exactly is an advance directive?

Another term would be a living will. It is any written statement that sets out a patient’s wishes about future treatments in the event of incapacity. It can be a power of attorney for personal care, which empowers another person known as the substitute decision maker, to act on our behalf should we ever be unable to make decisions ourselves.

The presence of a caring individual who knows our story, knows our values and is prepared to act in our best interest is the best we can do if we cannot advocate on our own behalf.

Unfortunately, it has been generally difficult to encourage patients and their families to prepare for incapacity by making their wishes known. The attempt to discuss goals of treatment is often left too late in the illness, making it impossible for the patient to participate in the discussion.

The tendency has been to avoid this aspect of care, by both patients and health-care professionals, which in turn results in rushed, less than satisfactory decision-making when severe illness presents.

It is important to consider using goal-based decision-making, which can take many forms.

It could be doing everything possible to extend life, employing the full power of modern medicine. It could be selecting some measures to treat the patient, but avoiding others, with the intent to best preserve the individual’s quality, but not necessarily the quantity, of life.

Or, it could be providing only those measures that ensure comfort and relieve pain and distress, with the intent to ensure a peaceful death. This should occur in the family’s choice of location: at home, in hospice or within their long-term-care facility.

Dr. Peter Zalan is president of the medical staff at Health Sciences North. His monthly column tackles issues in health care from a local perspective.


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