Compassionate, informed advice about healthcare decision making

Posts Tagged ‘VSED’

VSED by Advance Directive — An Alternative to Prolonged Dying

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Margot Bentley

Margot Bentley did not want to spend her last days in the way she spent her last days. Hers was a fate almost all of us wish to avoid. She told her family her wishes, and she put them in writing. Yet, Voluntary Stopping Eating and Drinking by Advance Directive (VSED by AD) did not work for her.

In my last blog, “She Fasted to Hasten Death — VSED,” I introduced the idea of VSED. It is a legal and morally acceptable way to hasten death when faced with a terminal or chronic illness one finds unbearable. This option is only open to people with the presence of mind to notice that they are in a state they would consider intolerable.

As a nurse, Margot Bentley cared for many patients in the advanced stages of dementia. She let her family know, and put it in writing, that if she ever progressed to severe dementia, she would like hand feeding withheld to allow her to die a natural death. When that time came, her family asked the care facility to honor their mother’s wishes and stop the hand feeding.

The facility refused, saying that Mrs. Bentley indicated she had changed her mind because she opened her mouth and received food offered to her.

Advanced-stage dementia patients may:

  • Require around-the-clock assistance with daily personal care.
  • Lose awareness of recent experiences as well as of their surroundings.
  • Experience changes in physical abilities, including walking, sitting, and — eventually —  swallowing.
  • Have difficulty communicating.
  • Become vulnerable to infections, especially pneumonia.

Source: “Stages of Alzheimer’s,” Alzheimer’s Association website

Everyone I know would like to avoid ending their days lying in a nursing home bed, unable to recognize family, dependent on others to wipe their bottoms, and help with all activities of daily living. People can live for years in this final stage of dementia. I have told my family to stop hand feeding when my time comes.

Margot Bentley’s family had to navigate the court system in British Columbia to try and comply with their mother’s expressed desire. The courts denied their request.

VSED by AD: A new frontier of end-of-life care

I have been chaplain for several patients who were allowed to die a natural death after the cessation of hand feeding. The families were convinced that their person would not want to be sustained by even hand feeding. Their deaths were peaceful within days of the withdrawal of food and water.

From: End of Life Choices NY advance directive

All these patients were in the most advanced stages of dementia. Even hand fed, these patients would probably not have lived more than a few months. I would have felt better had the patient left written directions, such as a living will or other advance directive. But these families felt certain they were requesting what the patient would have wanted if they could have spoken.

Here are links to three websites that provide information on VSED by AD; each includes a sample form:

End of Life Choices, New York

Final Exit Network

The Dartmouth Dementia Directive

I personally would like to avoid a prolonged dying from dementia. I want to spare my family the expense and emotional toll of watching me die by inches. I know it will be hard to invoke my advance directive, yet, they will have confidence that this is the way I want to go.

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Chaplain Hank Dunn is the author of Hard Choices for Loving People: CPR, Feeding Tubes, Palliative Care, Comfort Measures and the Patient with a Serious Illness and Light in the Shadows. Together they have sold over 4 million copies. You can purchase his books at hankdunn.com or on Amazon.

She Fasted to Hasten Death — VSED

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Rosemary Bowen was not terminally ill. She hastened her death by fasting. It took seven days.

Ten states and the District of Columbia allow for “medical aid in dying” (MAID). In those jurisdictions, terminally ill people with six months or less prognosis can get a prescription for a lethal medication in order to hasten their deaths. But what about patients not in one of these states or those whose life expectancy is greater than six months? VSED is an option.

Voluntarily Stopping Eating and Drinking (VSED) can be practiced by those seeking an earlier death. It’s what Rosemary did.

Rosemary Bowen, at 94, was living independently. She said she had had a wonderful life and did not look forward to a long, slow decline toward death. For years, she had been telling her children, “That her life would not be worth living if she had to depend on caretakers to feed her, dress her, and take her to the toilet.” Then, it happened. She fractured her back and went to rehab but was unable to live independently. That was enough for her.

Rosemary asked her daughter to video her so she could show others how to take control of their dying with VSED. The 16-minute video is available on YouTube.

VSED is a legal and, in my view, a morally acceptable way to end one’s life. It is based on several established principles in medical ethics. Affirming “autonomy” we allow patients to make decisions to reject any medical treatment — even treatments that could potentially save one’s life. Also, medically-supplied nutrition and hydration (for example, by a feeding tube) have long been understood to be a treatment that could be refused.

What Rosemary did was take these one step further as she choose to refuse food and water. She did this basing her decision on her own values:

  1. She valued independence above all else. Being dependent on others was an unacceptable quality of life.
  2. She did not want to be a burden on her family.
  3. She did not want to go the route of many of her friends who spent years declining in assisted living or nursing homes, facing one medical setback after another.

The importance of medical support during the process

Do not try this without medical support. Rosemary was able to get a hospice to care for her in her last days. Palliative care is also available to ease burdensome symptoms like pain and thirst. See “VSED Resources Northwest” for help with choosing this option.

“I am leaving life with great joy,” she says in the video. “I can’t tell you how content I am. I recommend it highly to do it this way.… The price of staying alive is having to live without quality and joy.… I feel so privileged to be exiting life like this and think of all the people who are wringing their hands and saying if only God would take you and all they need to do is give God a little help by holding back eating and drinking.”

At one point in the video, she is on the phone saying goodbye to friend. As she signs off, she says, “I’ll see you in heaven.”

Indeed.

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Chaplain Hank Dunn is the author of Hard Choices for Loving People: CPR, Feeding Tubes, Palliative Care, Comfort Measures and the Patient with a Serious Illness and Light in the Shadows. Together they have sold over 4 million copies. You can purchase his books at hankdunn.com or on Amazon.

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