This is part of the Globe's in-depth series on the agonizing decisions surrounding end-of-life care in the 21st century. For the complete series, click here
This is a scenario Canadian doctors see too often: An elderly mother is dying in hospital, unable to clearly communicate; the family, in their grief, must make an emotional decision. Do they ask for a feeding tube? Do they want a ventilator to help her breathe? Or morphine to control the pain, even if it hastens her death?
She never talked about her wishes, and her kids can’t agree. Whatever their decision, they may live with doubts long afterward: Did they give their mom the death she wanted?
“I have seen people in some just dreadful dilemmas and distress, thinking years after that they made the decision that resulted in the death of their loved one,” says Romayne Gallagher, a physician, and founding director of the division of palliative care at the University of British Columbia. “Most people find if they have some idea what their loved one had in mind, it makes a difference.”
Too few Canadians have the conversation until they are scrambling to make decisions at that bedside moment. And yet research clearly shows that discussing and planning your death means your wishes are more likely to be followed. As well, family members experience less anxiety and depression in the aftermath, and report that the process is less agonizing.
Most Canadians, for instance, say they would like to die at home – and yet, according to research cited in a recent Royal Society of Canada report on end-of-life care, nearly 70 per cent die in hospital, often in intensive care units – although this number varies widely across the country. While lack of access to palliative care is a major problem, Canadians are not planning how they want to die, at a time when technology has become so adept at keeping them alive.
An estimated 70 per cent of Canadians have no living will to set out their wishes when they can no longer voice them. Only 47 per cent have designated someone to make decisions on their behalf – and fewer than 44 per cent have spoken to a family member about their end-of-life care. This is why one of the most significant recommendations to emerge from the Royal Society report is that the public and the medical community both need to learn how to clarify these decisions – and learn how to have the “good death” sit-down.
What do you need to talk about? First, do your research. Studies have shown that people without care plans are more likely to get aggressive and often fruitless treatment, and are more likely to die in hospital. Both are associated with a poorer quality of death. When families don’t know the wishes of a loved one, they almost always default to more aggressive treatment – and often end up regretting the decision, says Daren Heyland, an intensive care physician and professor of medicine and epidemiology at Queen's University.
The uneasiness about end-of-life planning, doctors suggest, often comes from a lack of education about certain medical interventions. Take CPR. Television shows like Grey’s Anatomy suggest most patients are brought back to life. That’s not always the case, especially when there are other health issues. What’s more, many patients then land in intensive care, says UBC’s Dr. Gallagher, often on a respirator, unable to speak, eat or drink on their own, and under sedation so they don’t pull out the tubes, leaving families with the difficult decision to remove life support.
Other patients worry that asking that nutrition be withheld means they will starve – when, in fact, the body requires little, if any, sustenance in the last days of life. Dr. Gallagher describes one terminal patient asking for emergency resuscitation – she believed that choosing otherwise meant that no one would help her if she were choking. In palliative care, Dr. Gallagher observes, she would have had better access to treatments to relieve her symptoms, just as people who decline artificial nutrition and hydration are still given water if they request it, as well as care to keep their mouths moist.
“People worry that things are going to taken away, plugs are going to be pulled,” says Dr. Gallagher. “We might at some point stop treating the disease. But we never stop treating the person.”
