Advance Care Planning: How a Document on Death Can Help You Live

My “baby” turned 25 today. He lives in Los Angeles and is all grown up, but that doesn’t mean I didn’t celebrate his birth. In fact, as my children have left the nest and we don’t spend as much time actively celebrating birthdays with family and friends, I now use this time to reflect on them — the pregnancies, their births, and how they were as babies. With my youngest, it’s how he weighed ten pounds at birth, and the labor lasted only an hour. Or what an easy, placid baby he was, and then what a holy terror at 18 months. These are my family’s stories. All of us have these traditions and tales, and they create part of our identity.

As a geriatrician, family stories were often my favorite part of getting to know patients. Sure, I was interested in their occupation, marital status, and whether they had kids, but I really wanted to learn more about their lives — to get this glimpse into their identities. These details didn’t just help me build a real relationship with my patients, but provided morsels of knowledge that I could tap into when trying to help them navigate the health care world. How resilient is this patient? Is this patient likely to suffer in silence? Will this patient’s children be available, and if so, which ones? What triggers anxiety in this patient, and what helps them cope?

These conversations, this sharing of family stories, helps establish trust between patients and their physician. We trust our physicians with more than our health. We share our personal secrets, joys, and sorrows, so that in our time of need they stand with us, not only with medical support but with guidance and encouragement through our health struggles. As a culture we value this relationship so much that nine out of ten U.S. adults report high levels of satisfaction with their primary care physician, as reported in a new patient survey, released by the Physician Foundation in May 2016.

It was not uncommon for my patients to tell me about family celebrations that were important for them. And the older and more frail a patient became, the more they included me in the decisions about how, or if, they could make it to their granddaughter’s graduation or their nephew’s wedding.

So who better to discuss your advance care planning with than your primary physician?

What is advance care planning?

Do you know what I mean when I use the words advance care planning? It refers to having a discussion about how you would like to receive care at the end of your life. The “advance” part of advance care planning implies you are having this discussion prior to death, or even before you are sick. And the “planning” suggests you have this conversation with your loved ones and your physician. While a conversation is a great first step, having your wishes in writing is best. These advanced care documents, also called an advance directive, can be as simple as a list of requests you print out and sign, or as formal as a living will and associated documents, completed by an attorney and notarized.

Did you know that 90 percent of people say that talking with their loved ones about end-of-life care is important, but only 27 percent of Americans report having done so? And that only 26 percent of American have completed an advance directive such as a living will? And only seven percent of patients report having an end-of-life conversation with their doctor. Why isn’t more advance care planning happening?

Several reasons patients give are:

1. A perception that the documents may limit care. FALSE.
2. A perception that the documents are complicated and require the services of a lawyer. FALSE.
3. A perception that the documents and conversation should be drafted when you are extremely ill. FALSE.

In fact, Medicare feels this is so important that since January 2016 they have been reimbursing physicians and other providers to discuss end-of-life care with their patients during office visits. And a whopping 95 percent of physicians who took part in an April 2016 John A. Hartford Foundation survey are in favor of CMS’s expanded coverage.

How can I create an advance directive?

There are many resources you can turn to when you are ready to fill out your own advanced directive (an advance care planning form). Your primary care physician’s office probably has blank forms, as do many hospitals. Online, there is a wonderful version of an advance directive called Five Wishes from Aging With Dignity. You don’t need a lawyer or a notary unless you want one. Complete something, share it with your loved ones, and then make an appointment with your doctor to discuss it and give them a copy.

So think about how advance care planning tools could help you face your future more confidently. How it would help your loved ones feel less stressed as you grow older. How you could know your last wishes will be heard and respected.

And remember this. We celebrate many joyous events in our lives, and we want to honor and memorialize our loved ones who have died. Having advance care planning in place before we go can certainly lessen the blow. Nothing on paper can make these times less wrenching, but the lack of something in writing can make it much, much worse.

So do what I did. At the peak of my health I delivered my last child and several months later signed my advanced care planning documents. I was only 35 years old. I bet your physician has one, too. Join the club.