How to prepare for end-of-life care

Categories: Care.

The answer: A living will is basically a written document outlining your wishes for your medical care if you are unable to speak on your own behalf.

For instance, if you’re living with an incurable illness — or even if you’re perfectly healthy but want to be prepared for the unexpected — you might state you don’t want to be put on feeding tubes or mechanical breathing that could prolong your life.

While it can be helpful to write down your wishes, medical professionals who specialize in end-of-life care say it’s far more important to select someone who can make decisions on your behalf if you cannot; and to have conversations with this person about what is important to you. This process is called “advance care planning.” It also involves communicating with other key loved ones and your health-care providers.

Why, you might wonder, do you need to engage in these conversations if you have a living will?

A major reason is that you can’t possibly anticipate all the various things that might happen to you, explains Dr. Jeff Myers, head of the Palliative Care Consult Team at the Odette Cancer Centre of Sunnybrook Health Sciences Centre.

As a result, a living will may be either too vague or too rigid to provide meaningful direction for an evolving medical condition. And this is true of any written document expressing wishes or preferences for future care.

It’s also important to know that the legislation governing these documents, sometimes called advance directives, varies from province to province. Depending upon where you live in Canada, your caregivers may not be legally bound by your written instructions.

However, if your loved ones and health-care professionals know your values and wishes, they can make difficult decisions accordingly.

Advance care planning “gets people to think about the things that bring meaning to their life,” explains Dr. Myers. “What do you believe in? What do you value? What do you worry about? This exchange begins to shape a person’s goals for medical care.”

Dr. Myers points out that various studies have found people aren’t very good at guessing what others may want – even when it involves a very close relative.

One person may want to live long enough to see a grandchild graduate from university. Someone else may value physical independence above all else. And yet another may have a strong desire to die at home.

Dr. Myers adds that a person’s wishes for their medical care can change or evolve. “As an example, a young individual may consider dialysis to be a worthwhile life-extending treatment, whereas an older person with a number of medical conditions may consider dialysis to be overwhelming and something not worth pursuing,” he explains.

“That’s why it is a conversation that needs to take place over a period of time.”

The Canadian Hospice Palliative Care Association has launched Speak Up, a national campaign to increase public awareness about end-of-life advance care planning.

You may want to check out the campaign’s website, advancecareplanning.ca It contains resources and a workbook to help frame your discussions.

The legal process for selecting a surrogate, or substitute decision-maker, varies across Canada. The website includes an overview of these jurisdictional differences.

Of course, it’s critically important to pick a surrogate whom you can trust to abide by your wishes, says Louise Hanvey, a nurse and project manager for Advance Care Planning in Canada. “They have to understand that these are your wishes … even though they may not fully agree with them.”

Going through advance care planning eases the emotional burden on families at those times when a loved one can’t communicate. It eliminates second-guessing, and the potential tensions that can arise within a family faced with such decisions.

“The research shows that when people have had these conversations, they have a better quality of death, their families are less stressed, and the grief process is usually better following death for the family members,” says Ms. Hanvey.

With this background in mind, let’s return to your question about living wills. You may still feel a need to write down your wishes. But Dr. Shelly Dev, a Sunnybrook critical-care physician who has witnessed many families in the throes of making decisions for an incapacitated relative, says having a conversation beforehand is what matters the most.

“They need to hear it from you,” says Dr. Dev. “A piece of paper is very abstract.”

Paul Taylor is Sunnybrook’s Patient Navigation Advisor. His column Personal Health Navigator provides advice and answers questions from patients and their families, relying heavily on medical and health experts.  His blog is reprinted on healthydebate.ca with the kind permission of Sunnybrook Health Sciences Centre.  Email your questions to AskPaul@sunnybrook.ca