Talking end-of-life planning at the holidays

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It may seem odd to talk about end-of-life planning at this time of year. But seizing the opportunity while the family is together can save heartaches and misunderstanding later. Read the full article. For more on this story and for others like it, visit the Health Lab website where you can subscribe to our Health Lab newsletters to receive the latest in health research and information to your inbox each week.

Transcript 

Host: 

Welcome to Health Lab, your destination for news and stories about the future of healthcare. 

Today we’re talking about an unpopular but important item to bring to your family meals this season: We’re talking about how to discuss health care and end-of-life wishes during the holidays. 

"Can you pass the mashed potatoes, please?"

"Want some more pie?"

"If you got seriously sick or hurt, who should your doctors work with to make important decisions about your care?"

As the year comes to a close and families gather together to celebrate the holidays, it may seem odd to talk about end-of-life planning, but seizing the opportunity while the family is together can save headaches, heartaches and misunderstandings later.

It’s understandable why people want to avoid talking about it, 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 cozy, festive spirit of the holiday season talking about health care and end-of-life decisions?

However, this time of year is, in fact, ideal to talk about these topics with your loved ones, says Phillip Rodgers, M.D., chair of the Department of Family Medicine at Michigan Medicine and an expert on end-of-life care.

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.

Dr. Rogers says, "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. 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."

To help people navigate this awkward conversation, Dr. Rodgers and his Michigan Medicine colleagues 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. 

Here are some of the key steps Dr. Rogers shared with us at Health Lab:

1. 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 in the next decade or dementia years from now - any of which could leave you unable to communicate.

2. 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.

3. Tell your advocate your goals, values and wishes. You don't have to specify exactly which treatments you'd want. In fact, Dr. 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.

4. 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. A recent report from the U-M National Poll on Healthy Aging showed that only 27% of people age 50 and older had completed a DPOA for health care.

You can get the form online in a free booklet from Michigan Medicine that is designed to work under Michigan laws - and it walks you through the steps of choosing and formally designating this Patient Advocate, and having that choice witnessed, so that it is legally binding as a Durable Power of Attorney for Healthcare, without needing an attorney or notary.

The AARP offers links to free forms for all states, or you can get one from any health care provider.

Links to these resources will be included in the show notes for this episode.

Once your form is complete, you bring it to your regular doctor or another health care provider. Your insurance probably covers a discussion with your primary care doctor about advance care planning. Medicare and other plans offer payment for doctors to create the time to talk about these things as well. 

Your provider can enter the data from your form into your electronic medical record so that 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.

5. Spread the word. Let others know who your patient advocate is and that your choice is registered with your doctor. Write it on a piece of paper to carry in your wallet or purse. That way, loved ones and emergency responders will know in advance whom to turn to in an emergency.

Dr. Rogers also shared from other options that can help with end-of-life planning:

• Dr. Rogers notes that 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. 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 Dr. 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."

• Dr. Rogers says that 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. Someone with lung disease might specify the kinds of conditions under which they'd like to be placed on a ventilator, 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.

  According to a recent National Poll on Healthy Aging report from the U-M Institute for Healthcare Policy and Innovation, many older adults don't know about hospice or palliative care. 

  Adam Marks, M.D., M.P.H., from the U-M Health Division of Geriatrics and Palliative Care Medicine, describes both hospice and palliative care: 

  “As more hospitals, cancer centers and other health care locations increase the availability of palliative care, it’s important for everyone to know that if their care team mentions this type of care, it’s not a sign that they’re ‘giving up’ on treatment. Rather, palliative care providers can be a standard part of their care team to address the symptoms of serious illness and the side effects of treatment,” added Marks, who is also a medical director at a hospice in southeastern Michigan. “And as more hospice providers offer care to people with more diagnoses at the end-of-life, it’s important for older adults to know it can be an option for them.”

• Another type of advance planning revolves around driving, because health conditions can interfere with a person's ability to drive safely at any age, but especially in people over age 65. By filling out a free document called an Advance Driving Directive, a person can designate a loved one who can help them decide if it's time to cut back on driving or stop altogether. But a recent National Poll on Healthy Aging showed that 84% of older adults don't know about ADDs, though once they learned what they are, most agreed they are a good idea.

  Links for learning more about planning for health-related changes in driving ability, and links to ADD forms and other resources will be included in the episode description. 

At the end of the day, no matter one's age or circumstances, starting the dialogue is key. 

Dr. Rogers says, "Advance planning for your health is like a compass, 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."

A reminder that all Health Lab content including health news, best practices and research insights are for informational purposes only, and are not a substitute for professional medical guidance. Always seek the advice of a health care provider for questions about your health and treatment options.

For more on this story and for others like it, visit michiganmedicine.org/health-lab where you can also subscribe to our Health Lab newsletters to receive the latest in health, wellness and medical research information to your inbox each week. Health Lab is a part of the Michigan Medicine Podcast Network, and is produced by the Michigan Medicine Department of Communication. You can subscribe to Health Lab wherever you listen to podcasts.