Personal lessons on end-of-life care and the benefits of hospice

The health care professionals entering my sister's hospital room, or answering my questions in the corridor, had perfected a polite method of ascertaining whether I was entitled to information about her condition.

Nobody demanded, "Who the heck are you, and will I get canned for a Hipaa violation if I talk to you?" Nurses and physicians who hadn't met me just asked, "Are you family?"

"I'm her sister and her health care proxy," I would say. That was sufficient; we went on to discuss test results or her morphine dose.

My sister Debra was the third family member I have accompanied, with as much dignity and comfort as we could arrange, through her last days. She was 62 when she died last month of a progressive neurological disease in a New Jersey hospital. I thought I would pass along some personal lessons.

1. Nobody asks to see your advance directives.

When Deb was admitted to the hospital, for what initially seemed a treatable problem, she hadn't brought her advance directives, which appoint a person to make decisions should the patient become incapacitated, and give someone power of attorney. Few people do remember to bring them.

But she had always told me and others that I was her proxy. Early in her stay, she signed the hospital forms designating me her primary family contact and authorising the "disclosure of protected health information."

The kicker: None of this seemed to matter. As far as I can tell, no medical professional looked at any of these documents. Certainly, nobody ever asked to see them. As Rebecca Aslakson, a critical care anesthesiologist at Johns Hopkins Hospital, once told me in an interview, "When catastrophe happens, the hospital doesn't call your lawyer. It calls your family."

2. We should have advance directives anyway.

The more crucial function of advance directives may be to instruct the family, to tell the people who will make decisions for you what you want and, as important, what you don't want.

Deb could not speak much or direct her own care by this point. But her directive spoke for her: If life-sustaining procedures would "prolong an imminent dying process," or if their burdens "may reasonably be judged to outweigh the likely benefits," they should be withdrawn so that she would be "permitted to die naturally."

This was a sorrowful, sobering moment; nothing could make it less so. But to have her own wishes so clearly specified lifted a great weight off our collective shoulders. We knew what to do, because she had told us.

3. Hospice remains invaluable.

As hospice has evolved - what was largely a nonprofit, grass-roots effort is now dominated by for-profit chains - researchers and journalists have questioned aspects of its operation.

Hospice clearly reduces aggressive care at the end of life, and it allows more people to die at home. But does it save Medicare money, as supporters have long argued? Last year, a large study of cancer patients showed that it did; a recent study of nursing home patients came to the opposite conclusion.

My sister's was not the gauzy, sweet farewell we all hope for. Deb developed severe pain and required increasing doses of intravenous drugs to keep her comfortable. Hospice nurses came to the hospital twice a day to see her, adjust her meds and revise orders.

The hospital moved Deb's roommate out, leaving us with a private room. We shut off the TV and turned down the lights; my cousin brought ethereal-sounding CDs to play. Hospice gave us support and counsel, and gave Deb a peaceful death. No other cog in the health care system performs this service or is designed to. Hospice may need changes and improvements, but I don't want to contemplate where we would have been without it, and we are nothing but grateful.

©2015 The New York Times News Service