Choice of a healthcare proxy: By the flip of a coin

A close friend recently described the anguish he felt during his father's final days. His father had appointed both my friend and his older brother as co-proxies, not wanting to show favoritism. Unfortunately, the two sons couldn't agree on hospice care for their father. In the face of their disagreement, hospital staff assumed that by default, they should continue aggressive efforts to save the patient's life, and did so.

Advice to seniors: Choose one of your adult children to act as your proxy in case you are not able to inform hospital staff about your decision for care near the end of life. If you have two children, you can flip a coin, and notify the preferred proxy that s/he won a coin toss. (You may have to flip the coin more than once.) Tell the preferred proxy you'd expect him to consult the other family members prior to making a decision using the living will as a guide (unless the decision needs to be made quickly). That way, they'd gain the benefit of others' thinking, but will still speak with one voice to all the health care providers, to give them clarity about what they should do.

This should prevent any resentment from the child you have not chosen as the proxy.

See a story about a simple living will.

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.

My father, my hero: Paul Farbstein

Today is the third anniversary of the death of my father, my hero, Paul Farbstein.

He waged a long fight with Parkinson's Disease, without complaining. Even this disabling and humbling disease did not pierce his characteristic calmness.

With my mother's help, he did daily stretching exercises. To keep some muscle tone, he used a Theracycle, a self-propelling exercise bicycle, which greatly delayed his need for a wheelchair.

Long before Parkinson's, he had written a living will to express his wishes, and opted against heroic measures. We brought him to a hospice in the final days, at my urging. At that point, the only thing I could give my father was a good death.

Advice: Live like Paul Farbstein.

Read another story about hospice care.

If you can fix me, please do: A living will

Here's Dr. John Dykers Jr.'s end of life plan, in a letter to Annie's Mailbox:

I'm glad you brought up the end-of-life plan dilemma faced by 'Aunt Thelma, Uncle John, and my Marie.’'I am a doctor, and my patients have embraced my own end-of-life plan as follows:

"If you can fix me, please do. If you can't fix me, please help me avoid pain, fear, lack of air, hunger, nausea, thirst, loss of dignity, and prolonging the dying process. I understand it might take a few days for you to figure out whether you can fix me or not."

This format helps facilitate conversation between generations without the feeling of abandonment. Most of us old folks don't fear death as much as the process of dying or prolonged disability.

Advice: Send this to your parents, suggesting it as a default living will. If they want to revise or discuss it, so much the better.

Read another living will story. Thanks to Dr. Dykers, whose letter appeared in the Boston Globe on Sept. 9.

They strongly suggested we keep her in the hospital: Decisions at the end of life

When 32-year-old Rosaria Vandenberg lay unconscious in the hospital, a malignant brain tumor stealing her life, her brother decided to overrule her doctors' advice and bring her home to die. He believed, but he wasn't sure, that this was what she would have wanted. The truth is, when she was conscious, her family had never asked.

Back at home, Rosaria's two-year-old daughter, who had been afraid to touch her mother in the hospital, snuggled next to her in bed. Rosaria opened her eyes, the first time in a week, and took in the sight. She died the next night at home.

Her death made her sister-in-law, Alexandra Drane, realize that she had not thought about the kind of healthcare she would want at the end of life, much less discussed it with her family.

Such a conversation would have guided the family in the final days of Rosario's life. "When the end was near, the doctors pulled us aside and advised us of the options available. They strongly suggested we keep her in the hospital to make sure she would be well cared for – worrying that her case was so complex, there was no way we could care for her at home."

But her family could not get comfortable with the idea of Rosaria dying away from home and the daughter she so loved. In the end, the connection made between Rosaria and Alessia in the final hours was more than enough to convince the family that they had made the right decision.

Alexandra Drane wanted others to know that, so she launched Engage with Grace. Her website poses five questions for family members, e.g., "Could a loved one correctly describe how you'd like to be treated in the case of a terminal illness?"

Advice: Have the tough conversation with your family. It might help to show this to them to start the conversation.

Read another story about the decision at the end of life.

Thanks to Kay Lazar for the source article in yesterday's Boston Globe.