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Decision by Lee Hawkins to stop eating and drinking prompts new policy at VNA & Hospice of Cooley Dickinson



Last modified: Tuesday, September 23, 2014
NORTHAMPTON — In June, Eleanor “Lee” Hawkins and her family approached Dr. Jeffrey Zesiger, with the VNA & Hospice of Cooley Dickinson, to talk about the end of her life. She was 90, frail, and though she loved life, she felt it was time to think about her death.

She had decided she wanted to bring about her death by stopping eating and drinking.

After examining Hawkins and extensively questioning her and her daughters, Zesiger determined that due to late-stage arthritis and other ailments, she would not live more than another six months, which qualified her to receive hospice care.

The decision to stop eating and drinking was entirely her choice, Zesiger said. It was also a step that would hasten her death, a fact that caused soul-searching among medical staff at the program.

At the same time, there was a sense that Hawkins might be on the cusp of something, and that others in her position might be thinking about similar choices. This prompted the VNA & Hospice of Cooley Dickinson to develop a new policy regarding what is known as VSED, voluntarily stopping eating and drinking.

The policy, now in draft form, is two pages long and explains the steps Cooley Dickinson VNA & Hospice and patients will go through if VSED is a desired option. These steps include convening a “hospice interdisciplinary group” to discuss the patient’s request, assembling Cooley Dickinson’s ethics committee, and allowing staff to opt out of caring for the patient.

To create that form, the team did some homework.

On Aug. 6, Zesiger, Maureen Groden, hospice and palliative care manager at CDH, and Andrée Leblanc-Ross, Hawkins’ hospice nurse, engaged in a conference call with Timothy Kirk, an independent ethics consultant for hospices. Kirk is chairman of the ethics advisory council of the National Hospice and Palliative Care Organization in Alexandria, Virginia.

In a telephone interview with the Gazette, Kirk said he was speaking as an independent consultant, not as spokesman for the national hospice organization. He noted that ending a life by stopping eating and drinking is by no means a new practice.

“It is probably the lowest-tech, oldest form of hastening your death,” he said.

While he believes, based on anecdotal evidence, that the practice now is coming more out into the open, there is no data to back that up. Until eight or 10 years ago, Kirk said, the practice was never even discussed in health care literature and though he has researched the question extensively, he has found no way to document how common the method is.

“I don’t think there’s any reliable data about how frequently it occurs now, how frequently it occurred 10 years ago, or how frequently it occurred 50 years ago,” Kirk said.

Over the past year or two, he said, he has received calls for advice from “a handful” of hospice agencies, just as the Cooley Dickinson hospice did, looking to adopt VSED policies after being approached by patients.

The most important part of any such policy, he said, is that it call for clinicians to engage in long talks with the patients that probe the goals, objectives and motivation behind such a decision. Any assessment should tease out whether the desire is prompted by factors that could be taken care of another way — with, for example, pain management, other symptom relief, or antidepressant medication.

But if, after a process that could include a mental health evaluation, the patient still wants to undertake VSED, he sees nothing wrong in the least with a person making that choice.

Kirk is aware this option is controversial, one which would generate opposition in many quarters.

“Some people would probably look at this as a form of suicide. I don’t, because for me suicide is connected to disordered thinking, to impairment, often psychiatric, but not always,” Kirk said.

While he said he knows other viewpoints, notably religion-based, would argue that anyone who does anything to shorten a life is committing suicide, from a legal standpoint, that’s not true.

“In every state this is an option, it’s a legal option,” Kirk said. “You don’t need anybody’s permission to stop eating and drinking.”

Hospice organizations pledge to neither hasten nor prolong a person’s death, but Kirk believes that if someone in hospice care makes a decision to stop eating and drinking, the agency has an obligation to continue to care for that person.

“You’ve taken them on, you’ve taken responsibility to support them until they die, to support their family until they die, and if you stop taking care of them because you don’t like the choice they made, that’s a kind of moral abandonment,” said Kirk. “They still need your care and support.”

Zesiger said in the case of Lee Hawkins, although he felt certain Lee was making her choice for appropriate reasons, asking her to be evaluated by a psychiatrist was in part a way to counter criticism, should there be any.

“The feeling was that in our polarized society it was important to have a non-partisan psychiatrist evaluating her to determine that she was not depressed and that she had the capacity to make an informed medical decision,” he said.

As for himself, Zesiger said he harbored no doubts about Hawkins’ motivations or capacity to make her own decision. And he believes hospice’s role was entirely appropriate.

“We were just supporting her at the end of her life, but were not telling her how to shorten her life or prolong her life and neither were we urging her do things that would shorten or prolong her life,” he said.