GeriPal: Family Meetings, DNR Orders and Quill.

From Alex Smith at GeriPal comes this story of how medical personnel handle family meetings where members disagree about the manner in which to proceed with treatment:

We moved on to discuss a challenging conflict that occurred during a recent family meeting. The patient was in her 80’s, had advanced dementia, and had experienced a precipitous decline in her health status since suffering a compression fracture one month prior to admission. She no longer walked due to back pain. She had developed bedsores. She was admitted to our service with urosepsis, her third admission in the last month. In the family meeting, the patient’s husband agreed to the suggestion that she not be resuscitated in the event of a cardiac arrest. The patient’s son and daughter, however, strongly opposed a “Do-Not-Resuscitate Order,” saying, “We want everything done for our mother.” I asked the intern, who ran the family meeting, how he felt when this conflict came up. He said that while he wanted to support the husband, he didn’t know what to say to the adult children. He felt he had lost control, as family members had begun talking over each other and the medical team, and tensions were rising. I passed out an article published in the Annals of Internal Medicine by Quill et al., “Discussing Treatment Preferences With Patients Who Want ‘Everything.’” This terrific article describes a structured approach to addressing these issues with patients and families, beginning with an examination of the underlying reasons and emotions behind the request, an exploration of the benefits and burdens of treatment options and their alternatives, and culminating with a recommendation for care that encompasses what is known about the patient’s values and preferences. We role-played the family meeting, with the other house officers playing the part of family members. The intern used the suggested structure and his own words. He still struggled, and we had to rewind a few times to play parts over, but ultimately he learned, and felt more prepared to run a “real world” family meeting.

We on the outside can talk about coercion, natural death, end of life planning, and medical proxies all we want. But the actual experience of consulting with a family - and Smith's effort to share that with us - is a necessary lesson to those of us who write and think about end of life care.

The article referred to in this excerpt can be found at the above link and here.

An aside: Quill has taken a lot of flack from "pro-life," anti-choice-in-dying advocates because of his role in the Vacco v. Quill court case in 1997 which challenged New York states law against assisted suicide. Below is an excerpt from an interview conducted with Quill regarding that case.

A case with one of your patients led to a national debate in 1991. What happened?

A longtime patient, Diane, developed acute leukemia, with a 20 percent chance of long-term survival with aggressive treatment. I recommended treatment; she told me, “I don’t think so.” …

I was taken aback; she was a relatively healthy young person … but I eventually accepted it, and we referred her to hospice care.

But Diane said: “I want a choice; I want some medication if it gets hard at the end.” We had a number of family meetings, and she convinced me she’d worry about the end. I prescribed her barbiturates with the promise that she would meet with me before she took them to be sure we turned every stone.

She had a wonderful three months on hospice. …

I got the bright idea I was going to write about this case with Diane. I thought [Jack] Kevorkian was too easy to dismiss, … and I thought this case would be something people would struggle with. I wrote it up in narrative form. sent it to the New England Journal of Medicine and got a call from (the editor), who asked me if I knew what I was getting into. …

I was told I would never be successfully prosecuted, but I went through a serious process on the way to that.

What led to Vacco v. Quill, the Supreme Court case that challenged New York’s ban on physician-assisted suicide in 1997?

In the 1990s, there were initiatives to try to legalize physician-assisted suicide – in Washington state, California and Oregon, where it passed.

At the time, a number of people decided we would try to challenge the laws preventing assisted suicide; we thought patients should have the right to request and doctors the right to respond. We do allow some patients to decide –– patients on ventilators –– but patients suffering more who aren’t on ventilators don’t have the choice.

This went all the way to the Supreme Court, where the vote was 9-0 against the right to assisted suicide. … But there was language in the decision about the right to a dignified death, a death that avoids pain and despair, that encouraged debate at the state level and opened the door to terminal sedation to relieve suffering. …

The middle ground has moved forward. Palliative care and hospice have moved forward. There’s increased acknowledgment of tough cases and a lot more conversation, evaluation and exploration of options.