Saturday April 16th is National Advance Care Planning Day. As my daughter would say, “Wait, what?” You too may be wondering why Canada would designate an entire day to remind us to do something called advance care planning. Let me tell you about my sister.
My family would have benefited if my sister had been able to make an advance care plan before she became too sick to speak for herself. We all had time to think about the possibility that she would, in the end, die from her disease, but we did not take the time to do the difficult work of advance care planning. We did not ask her what kinds of medical interventions she would want if she woke up one day and could not speak for herself, or her heart stopped, or her breathing stopped, or she stopped eating, or she stopped walking, or her body became filled with an infection. We didn’t get a roadmap and we were not offered one. We had no idea where we were going as we took one of the most challenging roads of our lives.
The conversations were too difficult – agonizing really. We knew what we wanted, which was for her to get better. We would tip-toe around issues, put our heads in the sand, and pray for a miracle. Each time my sister had a health crisis, the physicians had a “solution”, and we grasped at it because we saw it as a lifeline. We only saw one small step ahead of ourselves, not the big picture. At some point, we stopped helping her live comfortably and started prolonging her death with one aggressive medical intervention after the other.
Chances are better than good that you are already someone’s substitute decision maker, meaning that you may have to implement someone else’s advance care plan. If that person doesn’t have a plan, your job may be the most difficult and unforgettable thing you’ll ever do. It goes without saying that someone may need to do the same thing for you.
Let me explain the terms, “advance care planning” and “substitute decision maker”. In situations when you cannot speak for yourself, because you have had a traumatic accident and are in a coma, or because you have some form of mental incapacity, then you will need another person to be able to speak confidently on your behalf to tell health care providers what treatments you want or don’t want
How do you get started?
STEP 1:
Appoint a substitute decision maker (SDM) in a legally binding Power of Attorney document. If you don’t appoint someone, the law provides the list of people, in priority, who will act as your SDM. If there is no one available on the list, or if there is a disagreement between people of equal rank on the list, then Public Guardian and Trustee will step in to make health care decisions on your behalf. By appointing a SDM yourself, you can override the legal default and have a say in who is going to be making these decisions for you.
STEP 2:
Think about what kind of life you are happy with and about what kind of death you want. This is a process that goes far beyond a Do Not Resuscitate order or a no-heroics clause in a power of attorney document. It is more than writing a living will, or filling in an advance directive form. It is educating yourself so that you understand the effect of consenting to or refusing certain treatments. It is having conversations with your physician and your SDM about treatment options. Key questions include:
- Are you happy with your quality of life now?
- What loss of physical function would you be willing to tolerate?
- What loss of mental function would you be willing to tolerate?
- How do you feel about risk?
- Who do want to speak for you, i.e., appoint as your substitute decision maker?
When we don’t make an advance care plan, medicine and aggressive medical treatments can get in the way of a more peaceful death. Better planning would undoubtedly have improved the quality of my sister’s end-of-life care. It could have reduced the number of days she spent in hospital and in the intensive care unit and given her more time at home with us. It would have decreased our distress at having to guess what she would want when she was unable to speak for herself. It would certainly have reduced the degree of aggressive medical intervention that she endured.
Advance Care Planning is a process, not an event, and certainly not one conversation. It’s about looking at potential future healthcare decisions squarely in the eye, along with your substitute decision maker and health care team.
So how do you begin? Make sure you have a valid Power of Attorney for Personal Care in place and then talk to the person you’ve appointed as your SDM. It’s that simple. Advance care planning doesn’t make death and dying easy, but it gives a voice and dignity in dying to those who may find themselves without one during one of the most important times of their lives.
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