Her husband wasn't ready: Discussions about the end of life

Dr. Jeffrey Schnipper's story:

I see people die in horrible ways. It doesn't need to be that way! In 2011, it takes a lot of work to have a good death. The default is to not have one.

A few years ago, an elderly woman with a bad case of dementia came to our hospital for a cardiac problem. She couldn't verbalize what she wanted regarding her healthcare wishes. Her husband was not ready to let her go. He was her healthcare proxy. He and I met probably for an hour, every day, for a week. We went through the stages of grief together. By the end, he was willing to let her go.

She had a good death.

As a hospitalist, I view these discussions as a really important part of my job; so do other hospitalists. I sometimes get the chance to get the whole family together for long periods of time, which primary care providers can rarely do.

Residents tend to be very concrete about these discussions, asking, "Do you want chest compressions? Pressors? Dialysis?" And so forth. But that's not what the discussions should really be about. It should be more like, "Is your goal to get a cure? To get relief of symptoms? To be as functional as possible? To be kept alive at all costs? Would you like to die at home? What’s important to you? If you were no longer able to do [fill in the blank], would you want to be kept alive?"

Dr. Schnipper's advice: The earlier you can have these discussions, the better, so you'll have a reservoir to draw from. First, talk with your healthcare proxy, after you've chosen one, then with your primary care provider. Then, there are forms to fill out, living wills, healthcare proxies, and so on, as appropriate for the state you live in.

Read my father's end of life story.

Thanks to Dr. Schnipper for our interview of March 16.

The happiest six months of her life: Hospice care

Fiona Harrison's story:

To the Editor of the New York Times:

Your article, "Weighing the Medical Costs of End-of-Life Care," on Dec. 23, focuses on quantity of life versus cost, but what about the suffering of the patient and the family?

During her first year, my daughter Erica was treated at UCLA Medical Center. From birth she suffered severe neurological defects, causing her great physical pain. My husband and I, daily witnesses to her suffering, decide to seek pediatric hospice care.

UCLA refused to consider a hospice referral, so we decided to transfer Erica to Children's Hospital Los Angeles, which serves a less affluent population, and where the doctors supported a transfer to hospice care.

The results were dramatic. Her care focused on pain relief over survival, and Erica had the happiest six months of her life. She died at home, in our arms – perhaps a few months earlier than if we had kept her at UCLA, at lower cost and, most important to us, with much less pain and suffering.

Read Art Buchwald's hospice story. Thanks to Fiona Harrison for her letter to the editor in the New York Times on Jan. 2

Advice to families with terminally ill loved ones: You can insist on hospice care if you want to.