It's National Health Care Decisions Day: Who will you designate?

(Maine.gov)

We know that at least 90% percent of Americans have heard of a living will, but still only about one third have one. Even among nursing home residents, only 65% have some type of Advanced Care planning documentation. This is not news in the health care community, but if we want to change these numbers we have to ask “why?”

Many Americans remain silent about their own wishes. As practitioners, we do not think it is out of fear. We think it is simply that these are hard conversations to have.

Hospitals have at least been asking about advanced directives since the early 1990s. The Federal Patient Self-Determination Act of 1990 requires all facilities participating in Medicare to inform patients about their decision-making rights and ask if they have an advanced care directive. This is why any admission to the hospital—even of a young, healthy adult—starts with questions about “code status” or advanced directives.

Many Americans remain silent about their own wishes. As practitioners, we do not think it is out of fear. We think it is simply that these are hard conversations to have.

We learned from this that many people have not thought about end-of-life care. To address this gap and facilitate the resource intensive discussions advanced care planning requires, the Affordable Care Act originally included a provision that would have made these discussions a billable service. Unfortunately the provision was removed after fears arose that reimbursing for these conversations would result in “death panels.”

But despite the conversations occurring under these laws, the Institute of Medicine report this fall on Dying in America, and the growing dialogue about dying in America—the popularity of Atul Gawande’s book, "Being Mortal," demonstrates significant public interest in how people age and die and how the medical profession responds—many Americans remain silent about their own wishes. As practitioners, we do not think it is out of fear. We think it is simply that these are hard conversations to have.

These are not routine questions to be answered in a vacuum. Do you want to be on a ventilator if you cannot breathe? Do you want antibiotics if you have an infection? Do you want nutrition and hydration if you cannot eat?

All of these considerations require context and details: How sick am I? What is my prognosis?

What social and financial supports do I have?

And what’s more, the answer to those questions is constantly changing.

April 16th is National Health Care Decisions Day. The purpose is to educate, empower, and inspire the public and providers to take action on advanced care planning. In spreading the word about advanced care planning, we want to stress the importance of designating a surrogate and letting your loved ones know who that is.

A surrogate is a loved one of your choosing who will speak for you if you cannot. He or she will be able to look at the entire landscape of your care, discuss the situation with your provider, understand in real time the details of what is happening, and then make a decision that best coincides with your wishes. You can use your state’s Advanced Directive form to designate a surrogate or agent. Alternatively, you can designate a medical power of attorney (POA) through a POA form. You should be sure to share a copy of the signed form with your surrogate.

As health care providers working in the field of palliative care—a growing branch of medical care personalized to each patient with a focus on quality of life and symptom management—we believe a chronically ill person plays a pivotal role in the development of an individualized plan of care.  When patients are clear about their wishes, research shows they enjoy more personal comfort, greater satisfaction regarding their healthcare, and often a longer life.

It is so hard to make decisions about hypothetical situations, but that is where many Americans, especially younger ones, find themselves when faced with advanced care planning discussions.
This National Health Care Decisions Day we challenge everyone to think about your surrogate.

Who would that be? Have you talked to him or her about end-of-life care before? Are you willing to legally designate that person on an advanced directives card you keep in your wallet?

For most of us, our end-of-life wishes will be refined in conversations we will have over a lifetime, punctuated by different pressured circumstances. And that is ok. But designating a surrogate is a first step that may be your most important step.

On April 16th, whom will you designate?