How to Discuss Health Care and End-of-Life Wishes During the Holidays
It may seem odd to talk about such topics at this time of year. But seizing the opportunity while the family is together can save heartaches and misunderstanding later.
“Who wants dark meat?”
“Can I have the mashed potatoes, please?”
“Care for some more pie?”
“If you got seriously sick or hurt, whom should your doctors work with to make important decisions about your care?”
You might expect to hear three out of those four questions in the next few weeks as the holiday season swings into full gear.
But that fourth one? Not so much.
After all, who wants to think about picking a loved one to speak for you someday at the hospital if you can’t speak for yourself? Who wants to dampen the festive spirit with a discussion of health care and end-of-life decisions?
But this time of year is, in fact, ideal to talk about these topics with your loved ones, says Phillip Rodgers, M.D., who heads clinical programs for the Adult Palliative Medicine program at the University of Michigan Health System.
Although it may be uncomfortable at first, prompting such conversations can help your family avoid hurt feelings, misunderstandings, strife and trauma that can erupt during a loved one’s health crisis.
“It’s important for people to make sure that we on their medical team understand what’s most important to them in making health care decisions,” says Rodgers. “We want to make sure everyone gets the best care possible, but we can only know what that means to an individual patient if we know what they want to achieve.”
Which is why Rodgers and his UMHS colleagues have adapted an approach pioneered at Beth Israel Deaconess Medical Center in Boston to encourage people to start this kind of dialogue with family during the holidays.
He explained some of the key steps:
Choose a patient advocate who will speak for you if you cannot. Every adult should have a patient advocate picked out and written down in his or her medical record. It doesn’t matter if you’re in perfect health. You could experience a health emergency — an auto accident next year, a serious illness next decade or dementia years from now — that leaves you unable to communicate.
Pick the best candidate. It doesn’t have to be your spouse, adult child or parent if you (or they) don’t think it’s a good idea. In Michigan, the law doesn’t assume any particular person is your advocate; you need to spell it out. Otherwise, medical team members might start with whomever they think is closest to you — and that may not be the person you want. This can lead to strife and even legal action if family members disagree.
Tell your advocate your goals, values and wishes. You don’t have to specify exactly which treatments you’d want. In fact, Rodgers says, it’s impossible to predict everything that might happen and what treatments might be available. But you can talk about what you value most and what kind of life would be acceptable to you after a health crisis. If you value living independently above all else, or having the ability to engage with and recognize other people, or being able to enjoy simple pleasures and activities, say so.
Complete a durable power of attorney for health care form. It lists your patient advocate’s name and contact information and other key details, including alternative advocates if your first choice isn’t available. You can get the form online from the U-M Health System that is designed to work under Michigan laws. Or you can get one from any health care provider. Once complete, bring it to your regular doctor or another health provider. Your insurance probably covers a discussion with your primary care doctor about advance care planning — a new benefit that helps doctors create the time to talk about such things. Your provider can enter the data into your electronic medical record so other health providers can view it. More and more, these secure records are available electronically to hospitals and clinics in the same network or beyond through secure sharing.
Spread the word. Let others know who your patient advocate is and that your choice is registered with your doctor. That way, they’ll know in advance whom to turn to in an emergency.
More points of conversation
Other complementary options can help you prepare. Living wills, which are separate documents from durable powers of attorney, aren’t legally binding in Michigan and some other states, but they can be a good way to spell out your wishes, Rodgers notes. A living will can help you say how you feel about being kept on life support, getting tube feeding or other topics.
“You don’t need to predecide things that you don’t know how to anticipate,” says Rodgers. “Just identify the person you trust to make decisions and let them know what’s important to you so they can keep that in mind if they ever have to help your medical team make those decisions for you.”
For people with serious illnesses or conditions they know will progress and leave them unable to make decisions, a more specific living will is a good idea, says Rodgers. Someone with a lung disease might specify the kinds of conditions under which they’d like to be placed on a ventilator later, for example.
Both your patient advocate and a living will can help guide decisions about when to start hospice services, which are typically used for the last six months of life. Or they can guide the use of palliative care, which tries to maximize quality of life, ease symptoms and provide an extra layer of support at any point in the course of a serious illness.
No matter one’s age or circumstances, starting the dialogue is key.
“Advance planning for your health is like a compass,” says Rodgers. “And the specific plan for your care is the map. You don’t have to draw that map in advance. You just have to provide the compass and tell us who you want holding that compass if you can’t do it yourself. And we can use that to show us how to get you the best care possible.”