End-of-Life Choice, Palliative Care and Counseling

Posts TaggedVSED

Dying of Cancer, Fritz Behr Refuses Radiation, Stops Eating, Has No Regrets

by Sanjay Talwani
Independent Record
November 27, 2012

A man on his deathbed smells delicious chocolate-chip cookies baking. He makes it out of bed and crawls downstairs to the kitchen, where he sees the cookies cooling on the table.

He reaches up for one, only to have his wife smack his hand away.

“Don’t touch them!” she says. “They’re for your funeral!”

That’s one of many jokes Fritz Behr has told Dr. Justin Thomas at the St. Peter’s Hospital Cancer Treatment Center lately. Behr visits the oncologist on Tuesdays, and has promised to bring two jokes with him at each appointment.

“It’s like ‘Tuesdays with Fritzie,’” Behr said, alluding to “Tuesdays With Morrie: An Old Man, a Young Man, and Life’s Greatest Lesson,” a 1997 book about a young man’s visits with his dying former college professor.

Behr, 79, has a big repertoire of jokes and also has stage four cancer. A tumor was removed from the back of his tongue about a year ago and he refused follow-up radiation therapy.

About 36 days ago, he decided not to eat, which he could do only with great difficulty anyway.

Now he spends his days at home, with plenty of visitors. He said he feels no hunger or pain, although he smells food and sometimes dreams of it.

“I got no regrets,” he said. “I’m as happy as a clam.” More

Healthcare Consumers Drive Peace at Life’s End Campaign

Last week Compassion & Choices and our friend, Neil Rudolph, held a press conference in Denver to launch a national public education campaign, “Peace at Life’s End — Anywhere.” We hope to inform people in every state of safe, legal and peaceful means to end life when physical decline and suffering become pointless and unbearable. Neil’s parents, Dorothy and Armond Rudolph, were in their 90s when they tallied their escalating discomforts, infirmities and limitations, thought through their options, and decided to pursue a chosen death.

Media outlets throughout the nation picked up the Rudolph story and broadcast our campaign via newspapers, blogs, TV networks and talk radio. Reader and viewer response is overwhelmingly supportive of the Rudolphs’ careful planning and rational decision to achieve a planned death by voluntarily stopping eating and drinking (VSED). Most Americans believe Dorothy and Armond, after a long, hard-working and fruitful life together, had earned the right to die on their own terms.

Knowledge and planning are key. We’re thrilled so many people are calling and writing for information on VSED and other peaceful, legal end-of-life options. We’re sending packets throughout the nation and hosting community forums across Colorado. We do this without charge and hope additional funding will enable Neil to make community presentations in as many states as possible. We’re especially focused on residents, and prospective residents, of assisted-living facilities because the Rudolph family was evicted from their senior community when administrators knew their plan. We have tools to help prevent that pitfall and others.

It’s dreadful to read of an elderly individual or couple who acted alone and in secret when they saw their lives narrowing and diminishing by the day. They might have seen calamity approach in the form of imminent dementia or increasingly invasive and ultimately useless medical interventions. They probably contemplated their options without input from healthcare professionals. With alarming frequency they turn to a gun or other violence, their loved ones left confused, grief-stricken, guilt-ridden and ashamed of the family tragedy.

Grief is unavoidable when a loved one dies. But comprehensive information and careful planning can prevent the bitterness, confusion, recrimination and emotional scarring that so often follow a violent death. We all need to hear how the elderly and ailing feel about losing the things that give their lives meaning and purpose. Families must put their own needs aside and listen when someone says they are ready to die.

Medical professionals should hold alarm and judgment in check when an elderly patient, spiraling downward in deteriorating health, hints that ending life now might be preferable to continued decline, and likely suffering and dying under intensive hospital care. Labeling such patients “suicidal” and locking them in a psychiatric ward is not an appropriate response. Doctors should be willing to engage in an intimate and rational discussion of how they might manage medical care with peaceful death as the desired outcome. Is there a pacemaker or implanted cardiac device they could deactivate? Could they discontinue critical medication or treatments and mitigate distressing symptoms? Would they provide supportive comfort care to ease the symptoms of dehydration that follow refusal of food and fluids?

Our “Peace at Life’s End — Anywhere” campaign includes important information for doctors, but it’s really aimed at healthcare consumers. Compassion & Choices offers individual consultation to anyone rationally seeking a peaceful death. But ultimately we can’t serve everyone in need of such intensive inquiry and consultation. We hope to awaken and empower people with the knowledge that their own doctor has the ability and legal authority to manage a peaceful death. Unfortunately, it’s a responsibility too many doctors have shirked for far too long. Armed with knowledge, patients will change their expectations of the medical profession. Gradually, we anticipate people will feel comfortable openly asking for their doctors’ expertise to help them safely navigate their final mortal journey.

When those conversations happen routinely, we’ll see fewer self-inflicted gun deaths among the elderly and infirm. Then families will be able to sit beside their loved ones as they leave this earth in a way that reflects and honors the values they lived by. And like Neil Rudolph, they will grieve loss of the beloved, but rejoice in the peace and dignity with which they left.

ABC News: Elderly Couple Refuse Food, Water to Die; Get Evicted from Facility

By MIKAELA CONLEY
ABC News
August 17, 2011

At 92 and 90, Armond and Dorothy Rudolph’s bodies were failing them. He suffered severe pain from spinal stenosis, a narrowing of the spinal column. She was almost entirely immobile. Both suffered from early dementia, according to their son Neil Rudolph. They wanted to die.

The Rudolphs, married for 69 years, decided to refuse food and water to end their lives. Although they lived in The Village at Alameda, an assisted living facility in Albuquerque, N.M., they maintained they had a right to die on their own accord.

Three days into their fast, the couple told their plan to staff at the facility. Administrators immediately called 911, citing an attempted suicide.

The Village evicted the couple, and the next day, the Rudolphs moved into a private home, where they again stopped eating and drinking. Ten days after he began the fast, Armond Rudolph died. Dorothy Rudolph died the following day.

“Both knew that they didn’t want to endure a lingering decline,” Neil Rudolph said. “Neither wanted to lose their independence.”

The Village at Alameda staff refused to comment on the Rudolphs’ eviction.

Marshall Kapp, director of the Florida State University Center for Innovative Collaboration in Medicine & Law, said there are several issues the facility likely considered after learning of the couple’s plan to refuse food and water.

“Legal apprehensions probably played a big part in their decision, along with the fear of bad publicity,” said Kapp, who was not involved with the case. “A facility retains the right to evict somebody if they can’t care for them properly most of the time, so you’d have to look at the contract they signed.”

Even if the family and individuals signed off in refusing food and drink, Kapp said the facility likely feared being sued by the district attorney or the state regulatory licensing agency for possible neglect.

Because neither person suffered from a progressive medical condition that may equire a feeding tube to keep the person alive, “we’re not talking about the usual kind of situation,” said Kapp.

Despite the legal issues, Neil Rudolph, in conjunction with Compassion & Choices, an organization that seeks to improve care and expand end-of-life choices, is launching a campaign called “Peace at Life’s End. Anywhere.” The initiative is meant to spread awareness of options, including the right to voluntarily stop eating and drinking to end one’s life.

“Nearly one million Americans live in these facilities, yet most don’t know how their end-of-life rights could be infringed upon as my parents’ were,” said Neil Rudolph. “Their eviction shocked me. I think it’s inhuman for mentally competent adults to be overruled at the end of their lives by an assisted living facility administrator, or by anyone else.”

“Stopping eating and drinking is peaceful and painless and people throughout the country don’t avail themselves of it,” said Barbara Coombs Lee, president of Compassion & Choices, in a press conference meant to kick off the campaign. “They turn to violent means and suffer needlessly, when this is legal and safe and available in every step.”

Mentally Competent Adults Have Right to Refuse Food and Drink

Coombs Lee stressed that Americans who are mentally capable of making an end-of-life decision should have the ability to die peacefully and with dignity, at home, surrounded by family and friends.

“Ethically and legally, there is no difference in withholding or not continuing a given therapy if started, whether this is hemodialysis, ventilator withdrawal or voluntary cessation of eating, as long as this decision is based on a patient/individual’s decision,” said Dr. Mohana Karlekar, director of palliative care at Vanderbilt University. “The Federal Patient Self-Determination Act assures competent individuals the right to refuse medical interventions, and it protects their right to determine when to discontinue medical treatment,” said Rhodes. “People can decide for themselves to discontinue medical treatment, including artificial nutrition and hydration, even when that choice can be expected to hasten their death.”

Dr. Joanne Lynn, director of the Center on Elder Care and Advanced Illness for Altarum Institute in Washington D.C., has argued against physician-assisted suicide as poor public policy and suggested that refusal of food and water is an alternative.

“Most ways of causing an end of life require the active participation of someone else, but stopping eating and drinking does not,” said Lynn. “We allow people to do many very risky things, and we allow adults to refuse life-sustaining treatment. We have to allow this course, though whether the assisted living center or any other particular setting has to cooperate is much more challenging.”

While starving of hunger and thirst may sound frightening to most, end-of-life specialists said it’s actually a fairly painless way to end.

“Most individuals who voluntarily stop eating after several hours stop feeling hungry,” said Karlekar. “They sometimes will feel euphoria due to metabolic changes in the body. And so, yes, it is a peaceful way to go.”

Stopping Eating, Drinking Is ‘Natural’

Rhodes said that several philosophers, including Bernard Gert, K. Danner Clouser and Charles Culver, have argued for refusing food and drink as a means of ending one’s own life.

“The advantages are that it demonstrates autonomy, it imposes no burdens or dangers on others and it provides a peaceful death,” said Rhodes. “And … it is natural. Dying people often naturally start to refuse food and fade away.”

Son of Evicted Elderly Couple, Patients’ Rights Group Launch Campaign to Protect End-of-Life Rights

DENVER, CO – Compassion & Choices today launched a national campaign to publicize legal options for peaceful dying. “Peace at Life’s End. Anywhere” aims to inform the public, the media and healthcare providers—especially assisted-living facilities—of end-of-life choices available in every state. The campaign was prompted by the eviction of an elderly New Mexico couple from their assisted-living facility for exercising their right to stop eating and drinking. Their son, Neil Rudolph, of Alamosa, Colorado, will co-chair the campaign. He begins a national speaking tour on Thursday in Pueblo and Colorado Springs to highlight Armond & Dorothy Rudolph people’s legal options for achieving peace at life’s end, wherever they live.

“No one must suffer needlessly at life’s end,” said Compassion & Choices President Barbara Coombs Lee. “Most Americans want to die peacefully, at home, without unbearable pain and suffering. Yet all across our nation every day, every week, Americans needlessly suffer bad deaths. Options for peaceful dying exist  in every state.

Most Americans don’t know they have the right to exercise these options. Unfortunately, some may try to obstruct the exercise of those rights, so advance planning is important. Today, we are launching a national education campaign to inform Americans of choices for a peaceful death, wherever they live.”

In 2003, the New England Journal of Medicine published the results of a survey of hospice nurses. Reports from nurses who had cared for patients who deliberately hastened their imminent death by voluntarily stopping eating and drinking (VSED) indicate such patients usually die a “good” death within two weeks after forgoing food and fluids.

“When the quality of my mom and dad’s lives started to deteriorate due to their extremely advanced age,” Neil Rudolph told a Denver news conference, “they decided they wanted to control their deaths and die peacefully at home. They discussed their views with my sister and me, and with their attorney. We called Compassion & Choices and spoke to a counselor. My parents decided to voluntarily stop eating and drinking.

“They met resistance from their assisted-living facility and had to move to a new home,” said Neil. “The Village at Alameda failed to respect my parents’ autonomy, imposing tremendous stress upon them when they should have been supported, not thwarted. The Village is not unlike thousands of assisted-living facilities in the country.

“Nearly one million Americans live in these facilities, yet most don’t know how their end-of-life rights could be infringed upon as my parents’ were. Their eviction shocked me. I think it’s inhuman for mentally competent adults to be overruled at the end of their lives by an assisted-living facility administrator, or by anyone else. My parents had every right to stop eating and drinking. The mistreatment of my parents should not be repeated. That’s why I’m working with Compassion & Choices to increase awareness of legal end-of-
life options, especially VSED, and to make it respected and honored across the country. I hope my parents’ experience can be the platform that improves end-of-life choice for others.”

Applicants to assisted-living facilities should review the facility’s offered contract carefully and negotiate clarity on any points regarding end-of-life decisions they may consider. Compassion & Choices’ Web site hosts a printable contract rider for those entering assisted-living facilities to help ensure their end-of-life choices are respected.

Even in states without an explicit legal framework, no one must suffer needlessly at life’s end. Compassion & Choices’ EOLC Program team stands ready to help all terminally ill and mentally competent patients—as well as those who just want to plan ahead—understand their options at life’s end, how to access comfort care and facilitate a peaceful death. To learn more, please contact Compassion & Choices’ End-of-Life Consultation Program at 1.800.247.7421.

Compassion & Choices also announced they will offer advocacy and legal assistance to help any individual encountering obstacles in their rational, well-considered plan to stop eating and drinking to achieve a peaceful death. Further, they will defend any healthcare provider facing sanction due to their medical and palliative support for a patient making a rational, well-considered decision to stop eating and drinking to achieve a peaceful death.

For more information please visit http://www.CompassionAndChoices.org/VSED.

Peace at Life’s End – Anywhere

This week at Compassion & Choices we launch a campaign to educate and empower individuals throughout America who want a peaceful death. We offer people legal options for peace and comfort at the end of life, whether or not they live in a state where aid in dying (ingestion of prescribed life-ending medication) is openly available. Often people outside Oregon, Washington and Montana feel doomed to unbearable suffering, risky self-help or violent means – often a gun – if medical interventions fail them. Peaceful options exist, and Compassion & Choices can help make them accessible and safe.

One method of peaceful dying is universally available, legal, safe, painless and suitable for a gentle parting in one’s own home with loved ones present. This is the purposeful refusal of food and fluids, in medical jargon known as voluntarily stopping eating and drinking (VSED).

VSED made its formal debut in medical literature in 1994 when Dr. David Eddy published his mother’s story in the Journal of the American Medical Association. Mrs. Eddy was 85 years old and suffered a multitude of bodily dysfunctions and deterioration. As her physical health rapidly declined, her life grew more limited and difficult by the day. She asked for her son’s help achieving a peaceful death, and his research led him to suggest VSED. The process went so smoothly, she became something of an evangelist. “Write about this, David,” she implored. “I’d like this to be my gift.”

Young people are often astounded to hear a sane person would refuse food and water. And of course, a healthy and vigorous person wouldn’t. But for those enduring a slow, agonized dying process or losing mental and physical function – as my own mother described, “by inches” – dying can seem the “least worst” outcome. And some would prefer peaceful, painless dying to further deterioration, a medical calamity imposing unbearable suffering, or the prison of an intensive care unit.

VSED features these benefits:

  • It requires no special laws or regulations. VSED is legal– for patients and their caregivers–today, in every state.
  • It requires determination and resolve, so no one can claim a person choosing VSED is acting impulsively or under coercion.
  • It is broadly available. Even those who do not meet the strict six-month terminal prognosis required under Washington and Oregon’s Death with Dignity laws can legally stop eating and drinking.
  • Death approaches slowly, typically within one to three weeks, so loved ones have time to gather, celebrate the life and love of the person preparing to leave them, and grieve together.
  • People with religious objections to aid in dying often accept a loved one‘s VSED choice and feel no moral condemnation.

People are often surprised to hear that twice as many patients in Oregon hospice choose VSED over self-administration of life-ending medication, although the state’s Death with Dignity law has been in use almost 14 years. Some of the attributes above may account for this phenomenon. Compassion & Choices has counseled people through VSED who did not qualify for aid in dying, and at least one client chose VSED over aid in dying to accommodate her religiously conservative daughter.

VSED doesn’t always go smoothly, and we recommend careful planning. Before beginning the program, a person should:

  • Carefully consider palliative options and other ways to make life more comfortable and enjoyable. Consider VSED only after all other options are exhausted.
  • Call Compassion & Choices End-of-Life Consultation Service for detailed information, consultation and emotional support throughout the process.
  • Visit a mental-health professional to check for treatable depression and follow any recommended treatment plan. If depression is not a factor, a clean bill of mental health will reassure medical professionals and family. This step can prevent an uneducated or unsympathetic doctor from labeling an individual “suicidal” and ordering a psychiatric lock-up.
  • Bring loved ones in on the decision. When they offer their support, approach doctors and other healthcare professionals together.
  • Arrange for the best hospice or palliative services available. The most common difficulty is dry mouth, and this responds to treatment.

Even the best-laid plans can go awry. Co-chairing this campaign is Neil Rudolph, whose parents, Armond and Dorothy, stopped eating and drinking together and died peacefully early this year. Officials at The Village at Alameda assisted-living facility, where Armond and Dorothy made their home, learned of their plans and erected obstacles. When the couple demonstrated they were rational and overcame those obstacles, the facility served them a 24-hour eviction notice.

We are appalled that an assisted-living facility could kick a couple out of their home for simply planning to die there. So we drafted a sample contract rider to use with a lease contract if prospective residents want to safeguard their right to live in their new home through the time of their death.

Finally, Compassion & Choices is so dedicated to making VSED available to anyone making a rational, thoughtful and well-considered decision that we commit to the following:

  • We will will offer advocacy and legal assistance to help any individual encountering obstacles in their rational, well-considered plan to stop eating and drinking to achieve a peaceful death.
  • We will defend any healthcare provider facing sanction due to their medical and palliative support for a patient making a rational, well-considered decision to stop eating and drinking to achieve a peaceful death.
  • We will provide these advocacy and legal services without charge as part of our mission to improve care and expand options at the end of life.

In honor of Mrs. Eddy, Dorothy and Armond Rudolph, and all the people of courage and resolve who pioneered VSED, we dedicate ourselves to making this option generally known and universally available, and thus preventing unnecessary and unwanted suffering.