Take control of your quality of death

Every one of us will die someday, but most of us don’t want to think — or talk — about it today. My father died last August at 83. A practicing Buddhist, he often told us, “When it’s time, you need to let me go.”

The problem was, when it was time, he didn’t know himself. He didn’t have a terminal disease. Instead, things started to break down. Small medical problems piled up, leading to recurring bouts of pneumonia. In four months, he went from regular gym visits to being unable to get himself out of bed.

He had an advance health care directive — a living will — that outlined the measures he did not want taken to extend his life. So why, at the end, did he lie in a hospital bed, rendered incoherent from powerful antipsychotic drugs, being prepped for a surgery he’d explicitly stated he did not want?

An hour before the surgery was to begin, an exceptional surgeon walked my mother and the rest of us through the potential outcomes of the surgery — including the possibility that my father might spend the rest of his life on a ventilator — and what his advance directive really meant. As a result, my father spent his last week in a hospice instead of the hospital. But he never regained the faculties he’d had just a week earlier, forfeiting the time and conversations with loved ones I know he would have wanted.

This happens countless times every day. Even though 9 out of 10 of us say we’d prefer to die at home, most of us end our lives in a hospital or nursing home.

Things are changing, though. As our population is aging, our awareness of the end of life is growing. Doctors, too, whose work has been focused on healing people and extending life, are accepting the inevitability of dying and redefining their role in this passage. In 2016, for the first time, doctors serving people on Medicare and Medicaid, as well as some private insurers, can be reimbursed for time spent talking with patients about their plans for end-of-life care, called advance care planning.

Studies show that at least half the physicians whose patients have advance directives are unaware of them. And talking with your doctor is the best way to make sure everyone on your medical team knows your wishes. Why? For patients with serious illness or frailty, the information you share with your doctor can become part of your medical record — called Physician Orders for Life-Sustaining Treatment, or POLST — so it automatically follows you to the hospital or a specialist’s office.

Here’s what you can do to ensure that your preferences — or those of someone you love — are honored:

▪ Create an advance care directive. It’s also helpful to include a written statement, your story, sharing your values and end-of-life wishes.

▪ Include a durable power of attorney for health care. This allows another person to give informed consent for medical decisions if you can’t. Make sure the person you choose knows your wishes and is capable of making these difficult decisions.

▪ Let the people you love — and who love you — know your wishes. Share your advance directive with your family and friends.

▪ Talk to your doctor(s). If you have a serious illness or are frail as a result of advanced age, let him or her know you want your preferences included in your medical record; this is a POLST. (Check with your insurer to find out if there’s a cost to you for this service; often you can avoid costs by making this conversation part of your annual wellness visit.)

Those who are working to improve the quality of the end of life will say it all begins with a conversation. Several decades ago, new forms of sexually transmitted diseases forced a generation to learn to talk about topics we’d rarely broached. Now, as that generation approaches another crossroads, it’s time to learn to talk about another taboo topic—one that none of us will escape.

This story was originally published April 24, 2016 at 7:25 PM with the headline "Take control of your quality of death."