If you can’t speak for yourself, who will make your medical decisions?
Have you thought about how you want to spend the last years, days and hours of your life? Have you talked about those wishes with anyone?
I know my father’s wishes: If he had a terminal illness, he would want comfort, not time. Incurable cancer, severe stroke, massive heart attack? No drawn-out course of treatment that gives him extra months at the cost of nausea, pain, infection and fatigue. If he were to permanently lose his ability to read, to do his beloved Sudoku, to tell us he loves us or understand us when we reciprocate, to get out of bed, or make his own decisions—if these things happen he wants no heroic measures, no clinical trials. “Just let me go naturally,” he says.
I know this because I have asked, many times. Not because I had to—my father just turned 65 and goes to the gym more than I do (I still can’t beat him in an arm wrestle). I’ve asked because I’ve seen patients who never had the chance to share their wishes. It is too easy a situation to wind up in; many of us never have that discussion with anyone.
Advance care planning is a process for deciding how your health care decisions will be made if you aren’t able to speak for yourself. It is comprised of two elements: choosing your decision maker, and conveying your wishes, values, and goals related to future and end of life care. Ideally, it should be guided by an ongoing conversation, reassessed and updated as our health changes and as we age. If you do not set up an advance care plan, there is an automatic process, a hierarchy (generally: spouse, then child or parent, then sibling) to determine your substitute decision maker, and they may be stuck not knowing what you would have wanted.
Research has shown that up to 75 percent of Canadians have thought about their wishes for end of life, but only about half have discussed them with their loved ones, and only 10 percent have talked with their health care providers. Another survey found that only 20 percent of patients had written advance care plans.
These figures are staggering, considering what we know about the benefits of advance care planning. Although we believe these conversations may be painful, advance care planning has been found to improve quality of life and end-of-life care. It is actually associated with little or no stress and decreased anxiety for patients and families, and people end up being more satisfied with their health care overall. Additionally, patients receive fewer aggressive and often futile interventions, including life support, at the end of life (which over 80 percent of us would not want).
Mrs. D. was a 75-year-old woman with advanced dementia who presented to hospital with a large stroke. It was almost certain she would never recover. She could no longer feed herself or walk, and could only barely communicate her needs. Her daughter thought she would have wanted every intervention to keep her alive as long as possible, while her son believed she never would have wanted to live like this. Mrs. D. had never discussed her wishes for end of life with her children. In the week that I knew her, Mrs. D. suffered. Her sleep was interrupted for vital-sign checks and noises from the patients who shared her rooms, she had blood drawn daily, she was confused and uncomfortable in her surroundings, and eventually, she received 20 minutes of CPR to try and start her heart, despite the near zero percent chance that it would beat again. Her children wailed outside, the son horrified at the process, and the daughter devastated to lose her mom. Is this what Mrs. D. would have wanted?
Thinking about death is incredibly hard for most of us, but once the topic is broached, there can be as much if not more relief than fear. Having the conversation is difficult and even when done right, acting on advance care plans can be complex and challenging for substitute decision makers. But the more they know, the better equipped they are to manage your care when you cannot speak for yourself.
As a patient, there are many ways to start the process, including questionnaires that help determine your values and inform you of your options. You can always talk to your primary care provider for support. Most important is talking to those whom you expect will become your decision makers. Sometimes people are nervous about raising the topic with their children or siblings. Earlier this week, I told a patient to blame me: “I am prescribing a conversation with your family about your wishes. Call it doctor’s orders.”
As a family member or close friend, you can open the discussion with the help of starter guides, or offer to join your family member at a doctor’s appointment. The important thing is to make sure the conversation happens, so you know what to do if you are called upon to be the decision maker.
As a health care provider, you can raise the question during patients’ periodic health exam or when there is a change in their health. Think about adding “ACP conversation” to your Preventive Care Checklist Form. I have started saying to patients: “I ask everyone over 65: If you had a medical emergency, and couldn’t speak for yourself, who would speak for you and make decisions about your care? Would they know what to do?” This week alone, one patient had no idea and was nervous to start, so we reviewed some resources. Another knew exactly what she wanted and had it all previously arranged. Neither was upset I brought it up.
Resources for patients and families:
- Videos: Intro to ACP or Five steps of ACPs
- Conversation guides and quick guides across Canada (eg: Ontario)
- Detailed online interactive and downloadable workbooks
- Blogs, personal coaches, and other planning tools created by patients themselves
Resources for health care providers:
- Resources by province/territory
- A thorough conversation guide for creating ACPs with patients
- National primary care toolkit
- Ocean toolkit
Noam Berlin is a family medicine resident at the University of Toronto. Before medical school he worked in a long term care home as a recreational therapy assistant. He is passionate about palliative care and comprehensive family medicine.