End-of-Life Choice, Palliative Care and Counseling

Right to Know

NEJM: Letter to the Editor on Palliative Care Information Act

From the September 1, 2011 New England Journal of Medicine, a letter to the editor by Compassion & Choices President Barbara Coombs Lee:

To the Editor:

In their Perspective (May 19 issue),1 Astrow and Popp assert that New York’s Palliative Care Information Act was passed without “adequate consultation” with physicians. They bemoan physicians’ new responsibility to either share crucial decision-making information with their terminally ill patients or risk accountability for unprofessional conduct. As an advocate for dying patients, my organization, Compassion and Choices, pursues legislated mandates only as a last resort. The results of the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT)2 was the wake-up call that prompted a 10-year, $350-million push to educate physicians and coax them to inform patients about end-of-life options and to honor their final wishes. That Herculean effort spawned many new policy statements and a new subspecialty: palliative care. But the information most patients receive before consenting to treatment as death nears remains woefully inadequate. Dying patients cannot wait forever for physicians to grant them the tools of informed decision making about disease-focused and palliative treatments at life’s end. Astrow and Popp are correct in pointing out that information is just the first step in beginning a sensitive, intimate dialogue. But without an informed patient, a meaningful dialogue cannot even begin.

Barbara Coombs Lee, J.D., P.A.
Compassion and Choices, Portland, OR
bcl@compassionandchoices.org

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.”

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.

Your Voice: Facing death with dignity, saying no to futile care

Cincinnati.com

July 22, 2011
By Susan Brogden

I want to die like my mother did.

Last Oct. 1, she was diagnosed with ovarian cancer. She was 85. It seemed obvious that treatment would be both brutal and futile. But as a matter of course, she was referred to an oncologist.

The oncologist was positively bullish on treatment. He said her age was not an issue and pronounced her “spry.” He recommended the removal of her entire reproductive system, with chemotherapy to follow. Chemotherapy, he assured us, was “kinder and gentler” than it used to be. Without treatment, he estimated that she would live perhaps three to five months. Treatment might double or triple her time.

We were befuddled. My mother was anything but spry. The treatment sounded gruesome. And what was the benefit of doubling her remaining time, if those extra months were spent recovering from surgery and then enduring chemo? So she declined.

She died not quite three months later, without ever seeing another doctor. She spent her remaining time in her apartment, surrounded by things and people she loved. Hospice of Cincinnati managed her care. And she died in her own bed, with my sisters and me and a Hospice nurse at her side – no 911 calls, no strangers, no flashing lights, no needles, no anguished last-minute decisions.

In 2009, Sarah Palin famously accused the Obama administration of proposing “death panels” to judge seniors’ “level of productivity” and decide “whether they are worthy of health care.” This was a response to a proposed amendment to the Affordable Care Act that would have covered the cost of end-of-the-life planning discussions between doctors and patients. The amendment was dropped. But my mother would have welcomed a compassionate and honest conversation with a physician about the physical, emotional, and – yes – financial cost of resisting her disease.

Money does matter here, not because a life can be assigned a value, but because we need to talk honestly about what’s purchased with the dollars spent on end-of-life treatment for the elderly with terminal conditions. How many patients, if they fully understood their illness and their options, and if costly, unpleasant treatments were neither encouraged nor discouraged but merely explained, might accept death with composure?

Let’s be honest about the realities of terminal illness in the elderly. Let’s embrace palliative care as a matter of course instead of pronouncing them “good candidates” for treatment. Let’s focus on addressing physical, spiritual and emotional comfort. We’ll simultaneously improve the quality of both life and death for those we love, while ensuring that limited health care dollars are used where there’s a real chance of altered outcomes.

Read the story in the Opinion section at Cincinnati.com.

Palliative Care Information Act at the Bedside: Achieving Truly Informed Consent

New York has a new law, called the Palliative Care information Act (PCIA). It’s simple, and short, and outlines a specific standard for doctors who care for patients at the end of life.

The PCIA says when a disease has advanced to the terminal phase and a patient is unlikely to survive 6 months, doctors must offer to inform them of this, and advise them of available treatments aiming to bring comfort, not vanquish disease. At this point the disease is beyond reasonable hope of vanquish, and the symptoms may escalate to the point of intolerance. Patients have a right to know when disease-specific treatments offer only a miniscule chance of prolonging their lives for a few weeks or months. And they have a right to know palliative therapies could make them feel a lot better for the time remaining.

Before the PCIA became New York law, they had no such right. I’d like to explore what this means for patient care and decision-making, with a concrete example. I hope to reveal and how stunning a reform we might expect.

In November 2010 Frontline aired a documentary called Facing Death. Filmed in the bone marrow transplant unit at Mount Sinai Hospital in Manhattan, it shows intimate scenes of distress, confusion and grief. It reveals chilling examples of physicians following an imperative to attack disease, however miniscule the likelihood of success and irrespective of associated suffering. It exposes aggressive treatments as life-threatening in themselves, and shocking acceptance of individual suffering as necessary collateral damage in Medicine’s larger war on cancer.

One episode remains seared in my mind. When I saw it, I thought, “This must change.”

The patient’s name was Norman, and he was dying from complications of his transplant, as 25-30% of patients do. Kyimar, his life partner, was constantly at his side, and her distress was palpable. She approached Karen, his doctor, to relay Norman’s request that aggressive treatment be stopped. Karen went to the bedside to clarify the situation. The following conversation ensued:

Karen, leaning over Norman: “What’s happening?”
Norman: weakly, barely audible, “I’m scared.”
Karen: “If you ever need a ventilator — you want to tell me something about that?”
Norman: no response
“If something happens and you have trouble breathing, do you want to be put on a respirator to help you breathe?”
Norman nods weakly.
Karen: “You do? Is that a yes?”
Another weak nod.
“Alright. OK.” Karen goes on: “If you’re tired and you don’t want us to do this anymore, that’s OK with me. But ya gotta let me know. I don’t want to put you through procedures that you don’t want to go through. But I don’t want to not do the things that are right in terms of trying to help you get better.”

Kyimar, who has been at Norman’s bedside 24 hours/day for two months tries to protest that Norman is consistent in his desire to sign a “Do Not Resuscitate” order. Karen tells her he’s probably ambivalent.

What happened here? The physician apparently believes she obtained informed consent for cardio-pulmonary resuscitation efforts, intubation maintenance and indefinite ventilator support. But it seems to me Norman’s consent was uninformed and coerced. Would a frightened, dying person ever reject the only assistance his doctor offers if gasping breathlessness were to seize him? Didn’t Karen tell Norman a ventilator was the only “right” course?

When Norman subsequently deteriorates,he’s moved to the ICU. After two days, his sister Phyllis, asks “Is my brother dying?” and confronts the inevitable. Phyllis receives sidelong glances and the question turned back at her. “What do you think, Phyllis?” Norman spends 4 days in intensive care before he dies.

Today the PCIA is in place and a dying patient’s consent to treatment must be truly informed. Karen would now be obligated to offer to share with Norman the same information she shares with her colleagues — she has never seen anyone in his condition survive. Norman is dying. When she talks with him about alternatives to aggressive resuscitative techniques, today she must also reveal that palliative treatment can ease his anxiety, breathlessness and pain if his condition worsens. He need not be scared that choosing to stop treatment would bring even more suffering than he currently endures. She must tell him he could leave the hospital and die at home with hospice care, or move to a palliative unit in the hospital. Doctors must now communicate that palliative support would be just as “right” for Norman as passing a tube into his lungs and adding procedures and machines in the intensive care unit.

If the PCIA diminishes the end-of-life agony of even one patient like Norman, it would be worth the effort of passage. But my guess is, empowered with concrete knowledge of their prognosis and palliative alternatives to invasive treatment, thousands of New Yorkers each year will opt for gentle, peaceful dying. And what a stunning improvement that will be!