Thanksgiving Conversations about End-of-Life Wishes
This story was originally published in November of 2014.
A friend shared with me that each year his family Thanksgiving conversation includes, "Nobody eats pumpkin pie, 'til you tell us how you want to die!" This sounds a bit odd: it's a topic that most of us find uncomfortable, it can be emotionally charged and we are not accustomed to nor do we know how to start the conversation about end-of-life.
Here's the reality. Eighty percent of people want to die at home surrounded by loved ones, but 80 percent actually die in a medical facility. Ninety percent of people feel it's important to discuss end-of-life care with their loved ones but less than a third do. Most people think that their loved ones know what their preferences for health care would be if they were unable to speak for themselves, but the reality is that most people either do not know or think they know and are wrong...and most people are unable to speak for themselves at the end of life. When we doctors don't know your preferences, the default is to treat. Under many circumstances, this could result in unnecessary suffering and distress with no clear benefit. Family members who make decisions for their loved ones without knowing their preferences often feel burdens of guilt for years afterward, regardless of their decisions.
In New Hampshire we can name a decision maker (durable power of attorney for health care or DPOAHC) who can speak on our behalf when we are unable to do so. It is relatively easy to execute such a document, much easier than having to go to court after someone's health condition causes them to lose their capacity to decide or communicate. However, the document is almost meaningless without having the discussion about what matters to you: how you would want to be treated and more importantly, how you want to live.
This important process is known as Advance Care Planning: picking someone willing and able to speak on your behalf (even if they disagree); reflecting on your past experiences with serious illness; reviewing what living well means to you; considering what you would want in the face of expected or unexpected serious health situations; having this conversation with your loved ones; and documenting this in an advance directive.
Starting the Dialogue
Most of us don't know how to start the conversation. There is a free tool made available by "The Conversation Project," that can help. What experiences or activities matter most to you? Who will you ask to speak on your behalf? Are they willing, able and available? Do they know what matters most to you? Can they speak up to express your wishes, even if they don't agree with you? Can they do this under typically stressful situations? For my birthday this past year, I asked my four children, ages 20 to 31, to start that conversation with me and to give me a copy of their advance directives. And for Father's Day this year, I asked my children to play the card game "My Gift of Grace" (available on-line for $25) that promotes conversations about living well, with the awareness that life has an ending. They rolled their eyes, went along with their dad on his special day and actually enjoyed the ensuing conversation. This Thanksgiving you may want to play this game or find another way to talk about what matters to you with your chosen proxy and your family.
If you are healthy, (no chronic illness) then this is just as important - you never know when a sudden event, such as a car accident, will leave you impaired so that you are unable to speak on your own behalf. If you were unable to know who you are, where you are nor recognize those around you, and doctors felt there was little chance that you would recover, would you want doctors to provide you with life-sustaining treatments? What type of comfort care would be most important to you?
Honoring Care Decisions
A new program, Honoring Care Decisions, aims to promote and improve the process of Advance Care Planning at Dartmouth-Hitchcock and in our communities. The program will study how to best initiate conversations, train staff and volunteers on how to help patients clarify their goals, and help document these in advance directives that are stored, easily retrieved and ultimately honored. Advance Directives are only as good as the process of Advance Care Planning, but that process is only as good as a system that is designed to ultimately honor our care decisions.
This Year on Thanksgiving
So, "Nobody eats pumpkin pie, 'till you tell us how you want to die" is not so out of line as it first appears. When you get the family together this Thanksgiving, consider "the conversation." Use the free Conversation Starter Kits from The Conversation Project, available in English, Spanish and other translations. Consider playing the game "My Gift of Grace." Speak to your doctor if you have questions about your own health and choices for care. Fill out a Durable Power of Attorney for Healthcare document by Healthcare Decisions Day (April 16), and continue the conversation every year.
About Dr. Burstein
Dr. Burstein is the medical director for Dartmouth-Hitchcock Nashua. He has been practicing family and geriatric medicine at Dartmouth-Hitchcock since 1989.