Patients must initiate end-of-life conversations

Just because Medicare will pay for advance care planning doesn't mean healthcare providers are prepared to begin end-of-life planning conversations with patients.

At a Nov. 5 presentation in the Twin Cities, Harvard physician Dr. Angelo Volandes borrowed from Charles Dickens when sharing his perspective that this may be the best of times to be sick in our country, and the worst of times to die.

He noted that the advance of medical care and technology allows doctors to treat and even cure diseases and conditions in ways that were unthinkable even 20 years ago. Volandes, who writes extensively on the delivery of end-of-life care in the U.S., also reflected that sadly, the very force for good — the advances of medicine that can aggressively treat disease — is most often the enemy of a peaceful death.

In its "Facing Death" documentary, PBS' Frontline reported that 70 percent of Americans voice the desire to die at home, surrounded by loved ones, experiencing comfort instead of suffering. Yet 70 percent of adults die in hospitals and nursing homes.

In his book, "Being Mortal," Dr. Atul Gawande, a peer of Volandes, writes that the average patient has 12 different doctors in his or her final year. Many if not most patients have a hospitalist and a litany of specialists — pulmonologist, cardiologist, nephrologist, hematologist and other "ists." All of these doctors can add up to impersonal and confusing care.

For example, my friend Beth told me about her experience as her mom's healthcare decisionmaker after her mother suffered a tragic accident in August. Beth shared that multiple doctors approached her, all within about 30 minutes of one another. She felt overwhelmed and confused as each physician independently recommended a treatment plan and listed possible outcomes. Only one doctor spoke her mother's name. Beth told me she wished one person could have woven together the entire picture for her mother's care, including the support of palliative medicine.

When my time comes, I want to see the faces of loved ones, not nameless doctors. I want comfort, peace and the warmth of familiar surroundings. How about you?

Advance care planning (ACP) will be a reimbursed service in 2016.

Late last month, Medicare announced that beginning in January it will pay healthcare providers for advance care planning — that is, conversations with patients about future and end-of-life healthcare preferences. This is a huge and hard-won victory after the 2008 "death panel" political skirmish that derailed reimbursement for end-of-life conversations between physicians and patients.

Are doctors prepared for advance care planning conversations? Realistically, no.

Most physicians are not trained to have conversations about end-of-life healthcare choices. Many believe that initiating advance care planning conversations signals surrender to the foe of death. Alternatively, suggesting additional treatment options aligns with a doctor's training to solve the problem. It just feels better to offer some sense of hope, even if treatment is likely futile.

How should we respond to the concept of Medicare reimbursing a doctor for a given "procedure" (the talk) for which the doctor had no training — or never practiced? That's a hard one to answer.

Patients can and should drive advance care planning.

Given the reality that most healthcare providers have little experience in the art of advance care planning and can be reluctant participants, each of us need to initiate these important conversations with our doctors. We have to own the responsibility of exploring and defining our own treatment preferences in a medical emergency if unable to speak for ourselves. Creating a healthcare directive is the first step. Expressing your treatment preferences in writing will prepare you for the conversation with your healthcare provider.

Why wait?

Waiting for the crisis, or waiting for your doctor to ask the questions … neither approach serves you nor protects your family from the painful conflict of arguing over the treatment choices presented by the medical team in the emergency room. You can be the hero of your family by proactively discussing your wishes before the emergency happens. And, your doctor will thank you.