Every year, I try to engage my family and friends in conversation about end of life care. I got the idea from Engage with Grace, an organization seeking to get people to answer five questions about the kind of care they would want when they become sick or are nearing the end of life.
I try to follow the same practice with my patients, because it is very important for me to know what kind of care they want, and what kind of care they don’t want.
This practice, which you can do with or without your health care provider present, is called advance care planning. When these instructions are written down, they are called advance directives.
Think about it: you want your wishes and choices known by your loved ones before you are too sick to give your own instructions. And they want the comfort of knowing that their decisions are ultimately your decisions.
As a society, we do think about planning for the future and are pretty good at making wills, but we do not seem to be as good with advance care planning and making those wishes known:
- 73% of Americans would prefer to die at home, but anywhere between 20-50% of Americans die in hospital settings. This may be because no one knew that they wanted to be at home and so could not make this happen.
- Eight out of ten people say it is “very” or “somewhat” important to write down end of life wishes, but only 36% actually have written instructions.
Sometimes patients are surprised when I bring up end of life issues. They feel they are too young, too healthy, or they don’t think I need to have this information. I think that knowing what kind of care my patients want or do not want is a key component to our relationship.
So, how do you begin this process? The first step is selecting a health care proxy: someone you designate to make decisions for you if you were to become so sick you were unable to make decisions for yourself. People often choose a spouse, a child, or a close friend. Whoever you choose, it should be someone you trust, someone who you think has the judgment to make hard decisions.
The next step is for you to discuss your wishes with this person. You may not have made all your decisions but they should have some idea about your values and preferences.
Engage with Grace attempts to make a roadmap for this discussion. There are others providing tools and helpful information including Five Wishes, and the National Hospice and Palliative Care Organization. I encourage you to learn more about advance care planning and have the conversation not only with your family but also with your doctor. They in turn can help turn the discussion into written directives.
So what about my family? Well, often they change the subject but little by little I am learning about their preferences. And they know that I’m ready and willing to have this conversation with them. At the very least they certainly know where I stand!
Dr. Eliza “Pippa” Shulman has been a primary care physician with Harvard Vanguard Medical Associates since 2009. She received her medical degree from the University of New England College of Osteopathic Medicine, in Biddeford, ME. Dr. Shulman’s interests include quality improvement and systems design, medical ethics, travel and baking for friends and family.