Can I Bring Death Talk to My Holiday Dinner?
By Loretta S. Downs
That was the question I was asked at a recent presentation I gave on Advance Healthcare Planning (ACP). “Of course, you can,” I replied. “Just be prepared with some information and look for an opening.”
Whether you gather for the holidays with family of origin or family of choice, being with the people who care most about you is a good reason to bring up death. “Ouch!” you say. I say, talking about death won’t kill anyone, and being open about an experience that 100% of us will face—for ourselves and with others—is a gift to everyone. Especially yourself.
Death is an elephant in the room and by acknowledging it rather than tiptoeing around it, we can take the “Ouch!” out of it, normalize it and develop the capacity to be present for each other through the end of our lives. We all want to die in peace and to leave our loved ones in peace with the way we left–and with the decisions they may have had to make for us in the end.
In order to increase the likelihood of a good departure, we need to document our wishes. There is no need for an attorney, although if you are doing an estate plan, an advance healthcare directive is usually part of it. This has nothing to do with your financial assets, only with decisions that will affect the quality of your death.
With no one available to guide them, our healthcare providers frequently suffer moral distress having to give aggressive, uncomfortable treatment to someone who is not being helped by that treatment. Faced with families in disagreement, or no one to advocate for the patient, the patient lingers on life support. That does not need to happen to you.
There are two parts to this directive. First, choose one person you trust to speak for you in the event you are hospitalized and can’t speak for yourself. They will be your healthcare proxy and will be able to access all your medical information and make decisions about your treatments. It has to be someone who will agree with your choices and can ensure your doctors follow your directive. Choose a subordinate just in case your numero uno is not available when needed.
Second, there’s a checkbox on the form to document your heart’s desire. Assess your values and beliefs. If you near the end of life and medical treatments could prolong your dying, is quality of life more important to you or length of life? You do have a choice.
All the information you need to prepare for your family talk is on three websites. The National Hospice and Palliative Care Organization not only provides information on both of those supportive services, it offers a link to the legal—and free—advance directive for every state. Download a form, read it and see how you feel. I would bet that you’re still alive. On to the next step: figuring out how you want to finish the end of your life.
The Compassion and Choices website is a treasure trove of significant information. Explore the Plan Your Care Resource Center to help you navigate the bumps you and your loved ones can encounter in critical illness. A useful resource is My End of Life Decisions: Advance Planning Guide and Toolkit. The site also provides understanding guidance for those with dementia.
Now you’ve got the paperwork parts of ACP in hand. I suspect you will let them sit on your desk/table/nightstand for a while. That’s fine. Dip a toe in, then a foot, then dive down deep– before it’s too late. Set a date to do the work.
The next step is initiate the conversation with your loved ones. Find a Starter Kit on The Conversation Project website. This is actually as critical as the paperwork. Some people videotape their wishes to guarantee there are no disagreements about, “what treatment she wants—or doesn’t.”
When you find that opening, all you need is to ask this question: “Has anyone here done an advance healthcare plan? You know, completed an advance directive form?” You will open up a door that they all want to walk through. It happens every time.
Make it about you, not them. “I read an article about how important it is to complete a directive. It helps loved ones and the doctors in cases of critical illness. What if I’m in an accident and seriously injured. I don’t want you wondering whether to plug me in or unplug me. I want to tell you what’s important to me.”
Then widen the discussion. “I found terrific information on these websites. Here, I wrote them down for you. I felt empowered reading about knowing my choices, how to document them, and how to talk about them.”
“What do you think? What do you want?” Someone may leave the room, but pretty soon, people are talking and you are a hero for starting The Conversation.
Make a plan while you’re healthy. Review and revise that plan after any life-threatening diagnosis, or if the person you trust changes. Keep talking. Give copies of the document to all of your doctors and anyone who could be called upon to influence medical decisions.
It’s likely that someone will blurt, “I just want to take a pill when I’m ready.” That’s another aspect of dying that is being spoken about more and more. Nine states and DC offer legal Medical Aid in Dying to their residents. 19 states are considering bills. In a year or two Illinois may be one of them. You can get more information on medical aid in dying at Compassion and Choices, and support Final Options Illinois.
Wherever you share this holiday season, whether you talk death or not, remember it’s your life story. Give it a good ending. Finish Strong.
Loretta S. Downs is the Founder of Chrysalis End-of-Life Inspirations