Barbara Bush, who died on April 16, has made a great contribution to all Americans — and especially elders and their families — by publicly talking about and making clear her decision to choose palliative or “comfort care” in her final days. And, as both Presidents Bush said in subsequent interviews, her choices and preferences were known and discussed by her family, who supported her and made sure her wishes were carried out.
What Mrs. Bush and the Bush family did was what we call advance care planning — a critically important process that can bring you closer to the people you love, and allow you and them to focus on the quality of your lives together when you are faced with serious illness.
So why is this talking important? Consider the facts:
- 90 percent of people say that talking with their loved ones about end-of-life care is important, but only 27 percent have actually done so.
- 80 percent of people say that if seriously ill, they would want to talk to their doctor about their wishes for medical treatment toward the end of their life, but only 7 percent report having had that conversation (Source: The Conversation Project ).
- 60 percent of people say that making sure their family is not burdened by tough decisions is extremely important, but 56 percent have not communicated their end-of-life wishes.
People are different, and how you feel about what matters most to you also differs — not only from individual to individual and family to family, but at different times in your life and under different circumstances. What you may feel about life and death before your 21st birthday is likely to be different from your 50th birthday, or if you have been diagnosed with cancer, Parkinson’s, or Alzheimer’s. Even longtime marriage partners may differ in their approaches to these preferences, wishes, and tolerance for pain.
The point is that this is your life, and decisions about how the final weeks and days happen should reflect your values, your choices, your own decisions.
What are the major steps in this advance care planning process?
- First, thinking about what matters most to you, writing your thoughts down, possibly talking about it with your partner, a friend, or a family member. It doesn’t matter if you disagree. These conversations usually need to happen more than once; the key is to develop what’s important to you. You may really want to be in a hospital and get the most up-to-date care, or you may prefer to be cared for and die at home as long as you can be comfortable. You may want to be able to recognize your children and be able to say goodbye to those you love, or it may be more important to receive every possible experimental treatment.
- Second, when you know what’s most important to you about your serious illness or end-of-life care, you need to select someone you trust to understand your desires, someone who is willing to speak for you if you are unable to speak for yourself. You need to designate this person — called a health care proxy or health agent — in writing, with witnesses. She or he will now have your ”power of attorney for health care” if you are unable to speak for yourself.
- Third, you should give this document to your doctor, if you haven’t explored these issues with her already. She will discuss with you the Massachusetts State form MOLST: Massachusetts Orders for Life Sustaining Treatment. This form is very specific about certain treatments you may wish, or not wish to have, and once signed, is legally binding on all your healthcare providers. You can always change your mind and make another decision, but until you do, the MOLST will be part of your medical record, available to doctors wherever you receive treatment.
- Fourth, ideally, you should make sure your family members have a copy of all these documents, and know where you keep the originals. Some people keep their health proxy and MOLST on their refrigerators, where EMTs can find them. (They are legally bound to start CPR unless they find signed orders not to.)
In addition to these formal documents, there are other documents — such as “Five Wishes” — which go beyond the steps above, and encourage you to provide details about how comfortable you want to be, how you want people to treat you when seriously ill, and other things you want your loved ones to know, such as how you want people to remember you, any hopes for family reconciliation, etc. It too is a legal document, in 42 of the 50 states.
A note about Alzheimer’s disease and other dementias:
Alzheimer’s is a dreadful disease because it is progressive and terminal; it affects cognition and behavior, and there are presently no treatments that can stop it. As it progresses, people lose their ability to think and share their thoughts, and it becomes more difficult to express their wishes. At the same time, knowing those wishes can give critical guidance to help families and caregivers through the many decisions that will need to be made.
It can be tempting to postpone having the conversation at all, but one of the great values of pushing through is that it tells your loved one that you care and will be there for them through difficult ups and downs. You may be frightened or distressed with the diagnosis, just as they are, but you are willing to talk about how they feel, and want to know what is important to them, now and in the future.
Talking about death sometimes seems almost anti-American; we are good at avoiding and denying challenging truths, and our mortality — particularly the mortality of those we love — may be the most challenging. But thinking and talking with your loved ones about advance care planning — eliciting and understanding our own values, preferences, desires about how we want to end our “wild and wonderful days” — doesn’t have to be dark and gloomy. It can bring a great relief, and can allow the joy of knowing that you are going to walk the path that you want, and that your loved ones understand that path and can support you in your journey.
I hope these words prove useful to some of you. Whatever wisdom they bring has been hard-won. Ben and I are currently walking this path, and these steps have been useful to us, even as Ben nears the end.
Paddy Moore is chair of Healthy Aging Martha’s Vineyard. April 16 was National Health Care Decisions Day, a collaborative effort of national, state, and community organizations to ”inspire, educate, and empower the public and providers about the importance of advance care planning re end-of-life decisions.” Healthy Aging Martha’s Vineyard (HAMV) is one of those community organizations, which is planning a collaborative initiative, with Martha’s Vineyard Hospital, Hospice of M.V., and other Island organizations, to increase advance care planning awareness by Islanders of all ages, especially elders and those with dementia.