I was lucky. My mother had a cancer scare when she was sixty-three. During that episode, we had many heartfelt conversations about what might happen, how she wanted to be treated, and how she wanted to die. Twenty years later, when she began to experience dementia, I knew it was time to have the conversation about her end-of-life care again. I brought her a copy of an Advance Directive, and we went over it step-by-step together, discussing each section, making sure that she understood what each choice would mean. I felt lucky, because I entered that conversation with her without hesitancy or fear, already knowing her willingness and openness to plan for her eventual death.
Not everyone is so lucky. Too many people are dying in a way they wouldn’t choose, too many of their loved ones are left feeling lost, frustrated, or guilty, and too many families are split apart trying to make unplanned and difficult end-of-life decisions for parents or children. With the graying of our home state of Maine, people of all ages are beginning to think about how they hope to age, how to stay healthier, how they want to spend their last days, and how they want to die. Medical economists promote end-of-life planning as a way to reduce expensive medical care at the end of life, and that is one important goal. But for most people, it is really about living our best possible lives, with comfort, caring, and dignity, until we die.
If you are hesitant to talk with your parents, children, or other family members about end-of-life care, there are people who can help you get started—your health care provider, pastor, best friend. “The Conversation Project” is one group of professionals who have experienced difficult end-of-life experiences themselves, and want to help guide the process for the rest of us: “We believe that the place for this to begin is at the kitchen table—not in the intensive care unit—with the people we love, before it’s too late.”
The first approach to a loved one can be just the beginning of the conversation, the planting of the seed of thinking about end-of-life care. If that feels uncomfortable, try watching a movie together—Being Mortal. Healthy Peninsula and the Blue Hill Memorial Hospital are sponsoring this exceptional film by surgeon Atul Gawande, which will be shown on Wednesday, March 8, at the Stonington Opera House from 6–8 pm, and again on Monday, March 20, at Parker Ridge in Blue Hill from 3–5 pm. Both showings will be followed by remarks from a panel of local professionals and audience discussion. Also, mark your calendar for the week of April 16–22 for National Healthcare Decisions Day (NHDD), an event that inspires, educates, and empowers people to talk about and document their advance care plans.
Janet Lewis, Healthy Peninsula’s Executive Director, has been coordinating a community-wide effort to encourage end-of-life conversations. “There is a tremendous amount of positive energy here in the Blue Hill Peninsula region to help folks find ways to start thinking about and openly discussing the things that matter most to them when it comes to their end-of- life care. Over the next several months, opportunities will be popping up all over our communities designed to encourage personal conversations, connection with primary care physicians, and to provide practical assistance completing and filing vital advance directive documents that will ensure that their wishes will be heard.”
The Maine Hospital Association has developed the Maine Health Care Advance Directive—also known as a “living will”—which is available online for printing at home or in paper form that you can get at your health care provider’s office. These forms can be completed by family members only or with guidance from your health care provider; they can be revised at any time if your wishes change and do not need to be notarized. Those you name as your “agents,” family members, neighbors or close friends, and your health care provider should all have copies of your Advance Directive.
What you can do: Start having “the conversation” with your parents, adult children or grandchildren, and friends. Print out or get a copy of the Maine Health Care Advance Directive and begin to look it over. Make sure your loved ones know what you want. Take charge, and feel the relief of having had “the conversation.”
Your Health Matters is a monthly health column by Healthy Peninsula and the Blue Hill Memorial Hospital. Sandra Phoenix is a family nurse practitioner and a member of the HP Advisory Board.