This is part of the Globe's in-depth series on the agonizing decisions surrounding end-of-life care in the 21st century.
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."
Experts say the most important steps are determining your wishes (which should include writing them down) and appointing a substitute decision maker, making sure they understand the kind of care you'd want.
Although the legislation differs by province, written plans are beginning to take precedence in decision-making. Some end-of-care experts recommend a specific advance care plan, one that designates the kind of medical intervention a patient might want in certain scenarios. Others suggest a more value-focused document that allows their substitute decision maker some latitude.
"What we are trying to get from people is: What gives you happiness? What give you value?" says Dr. Gallagher.
But an advance care directive shouldn't simply be a checklist of medical scenarios – no one can predict the precise nature of their death.
"My own personal directive says this is what I am living for, what health state is unacceptable, how I rate my interest in life-sustaining therapies versus comfort measures," says Dr. Heyland, 49, who has also made his wishes clear to his family. Should they be faced with those emotional decisions, "at least now they are equipped with my voice that will resonate in their ears, saying, 'Dad wanted this, or Dad didn't want that.' This will provide them with tremendous strength and comfort."
Lynn and Bill Hipwell, a retired nurse and physician living in Kingston, Ont., plan to sit down with their children and specify their wishes in the new year – an act they see as "a gift" to their blended family. Although one child will be their substitute decision maker, the entire family will have a copy of the document. "It's not a sad conversation," says Ms. Hipwell. "It's a reality conversation. It makes you feel good because you love your children and you want to spare them any stress."
At the same time, Dr. Gallagher says, doctors also need to be clearer in what they are asking families. For example, she says, a physician "might say, 'What would you like us to do for your mother?' Of course, everyone wants everything done for their mother."
It's not simply a question of choosing option A or B, based on a doctor's recommendation, she says. "We need to help people understand that they are being asked to represent the thoughts and feelings of their loved one."
For the decision maker, having a plan shifts the focus to the quality of care and relationships, rather than hand-wringing over medical treatments. Graham Christie, a paramedic who also lives in Kingston, says his mother Mary, now 90, first discussed her end-of life wishes with him a decade ago, "There will be no acute 'Okay, what do I do now' issue," he says. "I don't have to worry about what's going to happen. The decision is made."
STEPS TO A GOOD DEATH
Educate yourself on medical interventions. What are their quality-of-life consequences? Will they mean staying in hospital, being unable to communicate? What are the pain treatments and their side effects? "Some people think you either get medical interventions or are left to die," says Louise Hanvey, project manager of an advanced-care planning initiative called Speak Up, with the Canadian Hospice Palliative Care Association. Patients receive comfort care, she notes, even if they decline aggressive interventions.
Reflect on what you would want your death to be like. Who you would want present? Once in palliative care, would you want music? Are you most worried about pain control? Discuss options with your doctor. "You can live well until the minute you die with good palliative care," Ms. Hanvey says.
Write it down. Some experts suggest specifying medical interventions you'd like taken. Others say that because no one can predict the nature of their death, it is better to record what you value in life: independence, being pain-free, time with family. Some doctors advise avoiding terms such as "no heroic measures," which can be unclear. Instead, consider phrases such as "allow natural death."
Communicate your wishes. Designate a substitute decision maker – a family member or good friend – and ensure they know about any living will or care directive. Inform other family members to reduce potential conflict.
Review your plans regularly. Your care plan does not need a lawyer's signature. You can carry a short version in your wallet, where it is more likely to be found by emergency room staff and, depending on circumstances, considered as part of your care. Make sure your doctor has an updated copy as well.