April 16 has been declared National Healthcare Decisions Day (NHDD), and is being celebrated all week around America as a time to inspire, educate, and empower the public about the importance of advance care planning. NHDD encourages people to consider the question: If death is just a natural part of living, then how do I want to live my life, and what matters most to me all the way through to the end?
The experts tell us that 92 percent of people think it’s important to talk with their loved ones about their end-of-life wishes, but only 32 percent have actually done so.
Eighty percent say they think it would be good to talk with their doctors about the care they want, but only 18 percent have actually done so. There are many reasons why people haven’t had these conversations; many people say they’re afraid it would upset their families. But more than 53 percent of those asked say they’d be relieved if their elders started the conversation. And almost all families say they would welcome the guidance, and really want to know what their loved ones truly want.
So Healthy Aging Martha’s Vineyard (HAMV) is using Healthcare Decisions Day to launch a two-year initiative encouraging all Islanders above the age of 18 to take five important steps:
- Think about and decide what kind of care you’ll want in the future when you’re facing serious illness and death. Do you want to die at home, if possible? Would you feel more comfortable if you were in a hospital? Are there particular people you want around you? Do you want to avoid any pain, even if it makes you sleep a lot?
- Have a conversation with your family and loved ones, to let them know what you want. They don’t have to agree — this is your decision — but it’s important for them to know your concerns and decisions.
- Choose someone — maybe a family member or a good friend — to be your health proxy, someone you trust to speak for you and your wishes if you’re not able to speak for yourself. Make sure that the person you choose understands your thinking and is willing to accept the responsibility. That person doesn’t need to agree with you, but they do need to be able to speak up and advocate for you and what is important to you. You should keep a copy of the paperwork on your refrigerator, or near your phone, readily available to the EMTs if there is an accident.
- Have a conversation with your doctor about what you want at the end — where you want to be, how you want to be taken care of, who you want to have around you, what might support your happiness in this journey.
- Finally, ask your doctor to make sure your wishes are written down and registered in the M.V. Hospital electronic medical record. Once they are, other doctors in other hospitals should be able to check on those records and work with them. You should give copies of all your ACP materials to family or close friends, and keep copies on your refrigerator.
You may have some questions, like:
Why should 18-year-olds have an advance directive and healthcare proxy?
They need to do this because once they are 19 or older, their parents can no longer legally make medical decisions for them. If they should have an accident, or be seriously ill and unable to speak for themselves, doctors need a healthcare proxy who can express the person’s concerns and values and beliefs.
Won’t my thinking be different when I’m 40 years old, and when I’m 80?
Yes, quite probably. So we should all review our advance directives at key points in life — like when we graduate from college, or get married or divorced, or a spouse dies, or we have a serious illness along the way. It’s not a one and done; this is part of a life’s evolution, and preferences are not fixed qualities. They come out of the process of discussion and feedback within a network of important relationships.
Can I change my mind?
Yes, absolutely. And those changes should be reflected in changes to your advance directive, communicated to your proxy and, ideally, to your family members, friends, and particularly to caregivers and doctors.
What if my doctor doesn’t agree with my decisions?
Most physicians have been trained to “Do no harm,” and for a long time this has been interpreted to mean “Do everything medically possible to keep the patient alive.” However, over the past 15 years or so, medical care has moved, increasingly, to value and take into account what patients themselves see as valuable to them — their quality of life, their different views about what matters most to them. Patients and doctors need to have these conversations, ideally, as part of each annual medical checkup, with both of them taking the time to understand the wholeness of the patient’s health and the values the patient holds most dear.
Healthy Aging M.V. hopes that this op-ed will open a conversation throughout the Island on advance care planning. Please contact our office at 508-693-7900, ext. 455, or visit our website at hamv.org. Please share your thoughts and your questions, and consider becoming a trained facilitator to help others on this journey. Join our efforts to inspire Islanders to make these important healthcare decisions.
Paddy Moore is the chair of Healthy Aging M.V.