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.
