Barbara Bush, who died on April 16, 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 (her husband and her son) said in subsequent interviews, her choices and preferences were known and discussed by her family, who sup ported 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.
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 dementia. Even longtime marriage partners may differ in their approaches to these preferences and 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 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.
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.
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 Mass. State form MOLST – Mass. 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.
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 The 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 or the 50 states.
A note about Alzheimer’s Disease and other dementias: this 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 these wishes can give critical guidance to help families and caregivers through the many decisions that will need to be made.
Talking about death sometimes seems almost anti-American; we are good at avoiding and denying challenging truths, and our mortality. But thinking and talking with your loved ones about advance care planning — eliciting and understanding values, preferences and 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 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. 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 lives in West Tisbury. She is the chairman of Healthy Aging Martha’s Vineyard.
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