Category: The Dying Process

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Does palliative sedation ease suffering during end-of-life care?

By Michael Ollove

oward the end, the pain had practically driven Elizabeth Martin mad.

By then, the cancer had spread everywhere, from her colon to her spine, her liver, her adrenal glands and one of her lungs. Eventually, it penetrated her brain. No medication made the pain bearable. A woman who had been generous and good-humored turned into someone hardly recognizable to her loving family: paranoid, snarling, violent.

Sometimes, she would flee into the California night in her bedclothes, “as if she were trying to outrun the pain,” her older sister Anita Freeman recalled.

Martin fantasized about having her sister drive her into the mountains and leave her with the liquid morphine drops she had surreptitiously collected over three months — medicine that didn’t relieve her pain but might be enough to kill her if she took it all at once. Freeman couldn’t bring herself to do it, fearing the legal consequences and the possibility that her sister would survive and end up in even worse shape.

California’s aid-in-dying law, authorizing doctors to prescribe lethal drugs to certain terminally ill patients, was still two years from going into effect in 2016. But Martin did have one alternative to the agonizing death she feared: palliative sedation.

Under palliative sedation, a doctor gives a terminally ill patient enough sedatives to induce unconsciousness. The goal is to reduce or eliminate suffering, but in many cases the patient dies without regaining consciousness.

The medical staff at the Long Beach acute care center where Martin was a patient gave her phenobarbital. Once they calibrated the dosage properly, she never woke up again. She died within a week, not the one or two months her doctors had predicted before the sedation. She was 66.

“At least she got into that coma state versus four to eight weeks of torture,” Freeman said.

While aid-in-dying, or “death with dignity,” is now legal in seven states and Washington, D.C., medically assisted suicide retains tough opposition. Palliative sedation, though, has been administered since the hospice care movement began in the 1960s and is legal everywhere.

Doctors in Catholic hospitals practice palliative sedation even though the Catholic Church opposes aid-in-dying. According to the U.S. Conference of Catholic Bishops, the church believes that “patients should be kept as free of pain as possible so that they may die comfortably and with dignity.”

Since there are no laws barring palliative sedation, the dilemma facing doctors who use it is moral rather than legal, said Timothy Quill, who teaches psychiatry, bioethics and palliative care medicine at the University of Rochester Medical Center in New York.

Some doctors are hesitant about using it “because it brings them right up to the edge of euthanasia,” Quill said.

But Quill believes that any doctor who treats terminally ill patients has an obligation to consider palliative sedation. “If you are going to practice palliative care, you have to practice some sedation because of the overwhelming physical suffering of some patients under your charge.”

Doctors wrestle with what constitutes unbearable suffering, and at what point palliative sedation is appropriate — if ever. Policies vary from one hospital to another, one hospice to another, and one palliative care practice to another.

Not Euthanasia

The boundary between aid-in-dying and palliative sedation “is fuzzy, gray and conflated,” said David Grube, a national medical director at the advocacy group Compassion and Choices. In both cases, the goal is to relieve suffering.

But many doctors who use palliative sedation say the bright line that distinguishes palliative sedation from euthanasia, including aid-in-dying, is intent.

“There are people who believe they are the same. I am not one of them,” said Thomas Strouse, a psychiatrist and specialist in palliative care medicine at the UCLA Medical Center. “The goal of aid-in-dying is to be dead; that is the patient’s goal. The goal in palliative sedation is to manage intractable symptoms, maybe through reduction of consciousness or complete unconsciousness.”

Other groups such as the National Hospice and Palliative Care Organization, which advocates for quality end-of-life care, recommend that providers use as little medication as needed to achieve “the minimum level of consciousness reduction necessary” to make symptoms tolerable.

Sometimes that means a light unconsciousness, in which the patient may still be somewhat aware of the presence of others. On other occasions it might mean a deep unconsciousness, not unlike a coma. In some cases, the palliative sedation is limited; in others it continues until death.

Whether palliative sedation hastens death remains an open question. Pain-management doctors say sedation slows breathing and lowers blood pressure and heart rates to potentially dangerous levels.

In the vast majority of cases, it is accompanied by the cessation of food, drink and antibiotics, which can precipitate death. But palliative sedation is also administered when the underlying disease has made death imminent.

“Some patients are super sick,” Quill said. “The wheels are coming off, they’re delirious, out of their minds.”

In that circumstance, palliative sedation doesn’t accelerate death, he said. “For other patients who are not actively dying, it might hasten death to some extent, bringing it on in hours rather than days.” He emphasized, however, that in all cases the goal isn’t death but relief from suffering.

One review of studies on palliative sedation concluded that it “does not seem to have any detrimental effect on survival of patients with terminal cancer.” But even that 30-year survey acknowledged that, without randomized control trials, it’s impossible to be definitive.

‘Existential Suffering’

There is widespread agreement that palliative sedation is appropriate for intractable physical pain, extreme nausea and vomiting when other treatments have failed.

Doctors are divided about whether palliative sedation is appropriate for alleviating suffering that is not physiological, what medical journals refer to as “existential suffering.” The hospice and palliative care group defines it as “suffering that arises from a loss or interruption of meaning, purpose, or hope in life.”

Some argue that such suffering is every bit as agonizing as physical suffering. Existential suffering is the motivation that prompts many to seek aid-in-dying.

Terminally ill patients who took their own lives under Oregon’s aid-in-dying law were far less likely to cite physical pain than psychosocial reasons such as loss of autonomy, loss of dignity or being a burden on loved ones.

Using palliative sedation to relieve existential suffering is less common in the United States than it is in other Western countries, according to UCLA’s Strouse and other American practitioners. “I am not comfortable with supplying palliative sedation for existential suffering,” Strouse said. “I’ve never done that and probably wouldn’t.”

In states where aid-in-dying is legal, terminally ill patients rarely choose between aid-in-dying and palliative sedation, said Anthony Back, co-director of the University of Washington’s Cambia Palliative Care Center of Excellence. In Washington, patients with a prognosis of six months to live or less must make two verbal requests to their doctor at least 15 days apart and sign a written form. They also must be healthy enough to take the legal drugs themselves.

“If you are starting the death-with-dignity process, you’re not at a point where a doctor would recommend palliative sedation,” Back said. “And with terminal sedation, the patient doesn’t have that kind of time and is too sick to take all those meds orally,” he said of the aid-in-dying drugs.

But Back does tell terminally ill patients who don’t want or don’t qualify for aid-in-dying that, when the time is right and no other treatments alleviate their symptoms, “I would be willing to make sure that you get enough sedation so you won’t be awake and miserable.”

Whether palliative sedation truly ends suffering is not knowable, although doctors perceive indications that it does.

“You might be able to tell if their blood pressure goes up. Same with their pulse,” said Nancy Crumpacker, a retired oncologist in Oregon. “And you read their faces. If they are still bothered somehow, it will show in their facial expression.”

Harlan Seymour didn’t need to rely on those signs after his wife, Jennifer Glass, a well-known San Francisco public relations executive, received palliative sedation in 2015. A nonsmoker, she had metastatic lung cancer and faced a miserable death from suffocation brought on by fluids filling her lungs, her husband said.

She desperately wanted to die, he said, but aid-in-dying, which she advocated for, wasn’t yet legal. Instead, she received palliative sedation.

“The expectation was this cocktail would put her into a peaceful sleep and she would pass away” within a day or two, Seymour said. “Instead, she woke up the third night in a panic.”

Doctors upped her dosage, putting her into a deep unconsciousness. Still, she didn’t die until the seventh day. She was 52. Seymour wishes aid-in-dying had been available for his wife, but he did regard palliative sedation as a mercy for her.

“Palliative sedation is slow-motion aid-in-dying,” he said. “It was better than being awake and suffocating, but it wasn’t a good alternative.”

Complete Article ↪HERE↩!

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Doing Death Differently

Death doulas: the end-of-life guides who are recreating the dying experience

By Isabel Bird

When Rebecca Lyons’ great aunt died, her body remained with the family.

Her aunt’s body was kept cool with the use of dry ice for four days, and the family washed and dressed her for service, held ritual, and prepared themselves for saying goodbye.

“We had candles, we burnt frankincense … it was a gentle process because there was no loss of ownership. It was about coming together and having that time, to laugh and cry, and it wasn’t all doom and gloom,” Ms Lyons said.

“You have looked after this person in life and now you are going to look after this person in death … the whole experience is precious.”

It was a personal death-care experience for Ms Lyons that was also connected to her new role as a death doula.

Doula in Ancient Greek translates to “woman of service” and is traditionally used in the birthing sector, but has been adopted by the death-care movement.

A death doula, end of life doula, deathwalker or death midwife can be hired by a dying person or their family to offer support in a multitude of ways, which can include organising alternatives to conventional funeral home offerings.

Their services ultimately depend on individual need and choice but can range from pre- and post-death planning, assistance with wills or advance care directives, bedside vigils, and the organisation of counselling, respite or other therapies.

Planning options may include dying at home, keeping the body at home for one day or more before burial or cremation, or holding family-led funerals in alternative spaces such as in the home, in the backyard, on a beach or in a forest.

Ms Lyons, a former funeral director, became a qualified death doula four months ago, offering the service as part of her death-care advocacy business You n Taboo.

She said a death doula helped people to make informed decisions, and then worked with families to help carry out those decisions.

“There is so much involved in the death and dying process, yet there is a lack of community knowledge about it,” Ms Lyons said.

“From the point of death a nurse might say ‘which funeral director should we call?’ The question should actually be ‘do you want a funeral director called?’ Right from the start, there is a lack of information given (in the institutional space),” she said.

“When someone dies the family can legally take the body home. Funeral directors are not mandatory, there doesn’t need to be embalming or temporary preservation, coffins are not necessary, and there are choices about the funeral and where it is held, or if they even have one.”

Ms Lyons said planning for death can be beneficial for families because it takes the guess work out of wondering what their loved ones want, and can be beneficial for the dying as they can focus on spending time with family.

Zenith Vorago is the founder of the Natural Death Care Centre in Byron Bay, which has offered deathwalker training for 12 years.

She started working with dying people 25 years ago after dissatisfaction with the conventional way of doing death, which generally involves hiring a funeral home director and relinquishing control of the body.

“We didn’t want to give our people to the medical system, or to funeral directors we didn’t know,” she said.

Ms Vorago explained that the funeral industry in Australia is led by one corporation that had a monopoly over various links in the chain, from funeral homes and crematoriums down to coffin makers.

“There is a lot of money to be made and in my experience people don’t mind paying for a service but they don’t want to get ripped off.”

Ms Vorago also said the health care system would soon not be able to cope with the ageing population, and more people in society would need to care for their own dying.

“What we are doing is skilling people up, so they can participate in that role with some awareness about how to do that well and how to do it with the system (such as) using community nurses,” she said.

“We are empowering people to know what their options are, to consider what is best for them and their people, to make decisions that are right for them, so people die well.”

Social worker Lynne Jarvis has completed Ms Vorago’s deathwalker training, and runs JUMAVE on the North-West Coast.

Her business adopts a holistic, social justice approach to death, offering a range of pre- and post-death services similar to that of a death doula, including funeral celebrancy and the use of cooling blankets for at-home funerals.

Ms Jarvis is also responsible for organising the Coffin Club at Ulverstone, where people can make their own coffins and have open, end-of-life conversations.

She said increased family involvement in the death care process can lead to highly meaningful experiences, and provided the example where an individual held a wake before their expected death.

“It ended up being really beautiful experience for them, it was well planned and simple. As sad and painful as it was, there was still beauty and joy in that process on reflection.”

Ms Jarvis stressed that early planning was important.

“I am focused on training the after-death care (family and friend) network to make sure they know what they need to do,” she said.

“It does take more energy and time … but there is great value and healing, and that healing is really important for the longer term bereavement of those left behind.”

Alternative options, such as taking the body home, will never alleviate grief but it can ease the process.

Ms Lyons said that when someone dies people often feel a loss of control, which is heightened when the body is taken away.

“It brings a massive, massive trauma that adds to the grief … what we are saying to people is that you don’t actually have to do that,” Ms Lyons said.

“For those who suit the conventional processes there are funeral directors out there who do an absolutely almighty job, but, it is a choice.”

She added that alternative options are actually a return to the old way of doing things.

“My grandmother would tell me stories where Mrs so-and-so from three doors down died, and everyone turned up with casseroles, and the body was in the lounge room. People gathered, they mourned and grieved together. The community used to own it. We are reclaiming this lost knowledge,” she said.

“Death has an amazing way of pulling people together, and the process that my family went through, looking after my great aunt – that was truly beautiful.”

Complete Article ↪HERE↩!

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What the Living Can Learn by Looking Death Straight in the Eye

By Parul Sehgal

“The road to death,” the anthropologist Nigel Barley wrote, “is paved with platitudes.”

Book reviewers, I’m afraid, have played their part.

The robust literature of death and dying is clotted with our clichés. Every book is “unflinching,” “unsparing.” Somehow they are all “essential.”

Of course, many of these books are brave, and many quite beautiful. Cory Taylor’s account of her terminal cancer, “Dying: A Memoir,” is one recent standout. But so many others are possessed of a dreadful, unremarked upon sameness, and an unremitting nobility that can leave this reader feeling a bit mutinous. It’s very well to quail in front of the indomitable human spirit and all that, but is it wrong to crave some variety? I would very much like to read about a cowardly death, or one with some panache. I accept, grudgingly, that we must die (I don’t, really) but must we all do it exactly the same way?

Enter “Advice for Future Corpses (and Those Who Love Them),” by the writer, palliative-care nurse and Zen Buddhist Sallie Tisdale — a wild and brilliantly deceptive book. It is a putative guide to what happens to the body as it dies and directly after — and how to care for it. How to touch someone who is dying. (“Skin can become paper-thin, and it can tear like paper. Pressure is dangerous.”) How to carry a body and wash it. How to remove its dentures.

But in its loving, fierce specificity, this book on how to die is also a blessedly saccharine-free guide for how to live. There’s a reason Buddhist monks meditate on charnel grounds, and why Cicero said the contemplation of death was the beginning of philosophy. Tisdale has written extensively about medicine, sex and faith — but spending time with the dying has been the foundation of her ethics; it is what has taught her to understand and tolerate “ambiguity, discomfort of many kinds and intimacy — which is sometimes the most uncomfortable thing of all.”

Sallie Tisdale

It should be noted that this book is not for the queasy. Frankly, neither is dying. Tisdale writes calm but explicit descriptions of “the faint leathery smell” of dead bodies and the process of decomposition. “A dead body is alive in a new way, a busy place full of activity,” she writes. She offers paeans to the insects that arrive in stately waves to consume the body — from the blowflies that appear in the first few minutes of death to the cheese skippers, the final guests, which clean the bones of the last bits of tendon and tissue.

This is death viewed with rare familiarity, even warmth: “I saw a gerontologist I know stand by the bedside of an old woman and say with a cheerleader’s enthusiasm, ‘C’mon, Margaret. You can do it!’” Tisdale writes. She walks readers through every conceivable decision they will have to make — whether to die in the hospital or at home, how to handle morphine’s side effects and how to breathe when it becomes difficult (inhale through pursed lips).

To the caretaker, she writes: “You are the defender of modesty, privacy, silence, laughter and many other things that can be lost in the daily tasks. You are the guardian of that person’s desires.”

“Advice for Future Corpses” also offers a brisk cultural history of death rituals and rites, from traditional Tibetan sky burials to our present abundance of options. You can have your ashes mixed into fireworks, loaded into shotgun shells or pressed into a diamond. You can ask to be buried at sea (but don’t — too much paperwork). You can be buried in a suit lined with micro-organisms and mushrooms to speed decomposition, or let a Swedish company cryogenically freeze your remains and turn them into crystals. If you’re in Hong Kong or Japan, you have the option of virtual graves, where flowers can be sent by emoticon.

Tisdale’s perspective is deeply influenced by her Buddhist practice, never more so than when she considers how the mind might apprehend death as it nears: “Consciousness is no longer grounded in the body; perception and sensation are unraveling. The entire braid of the self is coming unwound in a rush. One’s point of view must change dramatically.”

Tisdale does not write to allay anxieties but to acknowledge them, and she brings death so close, in such detail and with such directness, that something unusual happens, something that feels a bit taboo. She invites not just awe or dread — but our curiosity. And why not? We are, after all, just “future corpses pretending we don’t know.”

Complete Article ↪HERE↩!

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Other Options to Hasten Your Death

Voluntary Stopping of Eating and Drinking (VSED)

To voluntarily stop eating and drinking means to refuse all food and liquids, including those taken through a feeding tube, with the understanding that doing so will hasten death. This is an option for people with terminal or life-limiting diseases who feel that with VSED their dying will not be prolonged. One of the advantages of this decision is that you may change your mind at any time and resume eating and drinking.

The US Supreme Court has affirmed the right of a competent individual to refuse medical therapies and this includes food and fluids. This choice is also commonly accepted in the medical community.

Before You Start

You must prepare to voluntarily stop eating and drinking. It’s not something that can or should be started the day it is first discussed.

  1. Talk with your physician to let them know of your plans. Talk with your physician about all your medications, and ask if a sedative or pain medication will be available to keep you comfortable.
  2. Complete an Advance Directive stating in writing that voluntarily stopping eating and drinking is your wish. Have your physician sign orders to withhold life-sustaining therapies and all resuscitation efforts.
  3. Talk with friends and family members who might care for you during this process early about your wishes and why you may want to take this course. Their support is crucial. However, beware that for many people families are often opposed to VSED and can pose a barrier.
  4. Finalize your business and financial affairs, make funeral and memorial plans, and gather your family members to share memories and say your good-byes.
  5. If you reside in a care facility, discuss your wishes with the staff and nursing director. You will need the staff to provide support and assistance.
  6. If you are already receiving hospice care, your team can help you prepare. If you are not on hospice, ask your physician for a referral to a local hospice provider. Usually hospice will provide supportive care once you start the process.
  7. If your illness is not one that is likely to cause death within six months, arrange for a psychological evaluation for depression and decision-making capacity by a mental health provider. This will reassure family, physicians, and others that your mental status is sound and this decision well considered.

Process

You can live for a long time without eating, but dehydration (lack of fluids) speeds up the dying process. Dying from dehydration is generally not uncomfortable once the initial feelings of thirst subside. If you stop eating and drinking, death can occur as early as a few days, though for most people, approximately ten days is the norm. In rare instances, the process can take as long as several weeks. It depends on your age, illness, and nutritional status.

At first, you will feel the same as you did before starting VSED. After a few days your energy levels will decrease and you will become less mentally alert and more sleepy. Most people begin to go in and out of consciousness by the third day and later become unarousable. Hunger pangs and thirst may occur the first day, but these sensations are usually tolerable; discomfort can be alleviated with mild sedatives or other techniques such as mouth swabs, lip balm and cool water rinses.

Since dehydration will most likely be the cause of death, it is important not to drink anything once you start. Even sips of water may prolong the dying process.

I wish I could say [my father] died a gentle death. But I’m not so sure. I wish doctor-assisted death had been available to my father. I believe it is what he would have wanted.

—Christopher Stookey, MD

We recommend that all medications be stopped except for those for pain or other discomfort. Stopping medications for heart problems or diabetes, for example, may speed up the process.

Finally, one of the advantages of VSED is that you may change your mind at any time and resume eating and drinking.

People who begin this process often express a sense of peace that they can finally “stop fighting.” Some people describe a sense of euphoria or pleasant lightheadedness. There is an analgesic effect caused by dehydration that may explain this response. With dehydration, people often need less pain medication, urinate less, have less vomiting, and breathe more easily due to decreased congestion.

Resources

  • Read this story, in which Christopher Stookey recounts his father’s death by voluntarily stopping eating and drinking.
  • Browse peer-reviewed, academic-journal articles on the subject.
  • Watch this video, in which Phyllis Shacter describes her husband’s dying after he decided to voluntarily stop eating and drinking:

 


 

Note: With the exception of quotes, information in the following sections has been adopted from End of Life Washington.

Not Starting, or Stopping Treatment

For some terminally ill people, aggressive medical treatment may not be helpful and may prolong the dying process without improving quality of life. Under certain circumstances, treatments can increase suffering, ruin the remaining quality of life, or even shorten life.

Stopping treatment can result in a peaceful death but it may also result in increased discomfort. Consult with your physician and arrange for optimal palliative (comfort) care before stopping treatment.

Stopping treatment can be combined with hospice and palliative care or voluntary stopping eating and drinking to shorten the dying process and reduce suffering.

Palliative Sedation

For dying people experiencing so much pain or unmanageable symptoms that they cannot get relief from medications unless the dose is high enough to make them unconscious, palliative sedation provides enough medication to keep them continuously unconscious and thereby free of pain and symptoms. All nutrition and hydration is stopped, and they usually die within a few days.

People using palliative sedation should be monitored around the clock to be sure the sedation is adequate. While this intensive monitoring can sometimes be provided in the home, it is usually provided in a skilled nursing or inpatient hospice facility.

Many [people] claim that palliative sedation effectively eases the suffering of patients when other means fail to do so. However, it is an unacceptable option for most terminally ill adults whose primary concerns are losing autonomy, quality of life and their dignity.

—Ann Jackson

While palliative sedation is an ethical and legal end-of-life option, it is not necessarily a right. While you can request palliative sedation, it is up to the medical provider to determine if it is appropriate. Some physicians and hospices are reluctant or unwilling to authorize palliative sedation. If having the option of palliative sedation is important to you, discuss it with your hospice or other medical provider well before it becomes necessary.

Complete Article ↪HERE↩!

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The VSED Exit

A Way to Speed Up Dying, Without Asking Permission

By Paula Span

Del Greenfield had endured repeated bouts of cancer over four decades, yet kept working as a peace activist in Portland, Ore., into her 80s. “She was a powerful force,” said her daughter, Bonnie Reagan.

But in 2007, Ms. Greenfield was struggling. She had been her husband’s caregiver until he died that year at 97, never telling her family she was feeling miserable herself. She’d lost much of her hearing. She required supplemental oxygen.

When she fell and broke an arm, “that was the final straw,” her daughter said. “She was a real doer, and she couldn’t function the way she wanted to. Life wasn’t joyful anymore.”

At 91, Ms. Greenfield told her family she was ready to die. She wanted a prescription for lethal drugs, and because she had active cancer, she might have obtained one under Oregon’s Death with Dignity statute for people with terminal illnesses.

Then her son-in-law, a family physician who had written such prescriptions for other patients, explained the somewhat involved process: oral and written requests, a waiting period, two physicians’ assent.

“I don’t have time for that,” Ms. Greenfield objected. “I’m just going to stop eating and drinking.”

n end-of-life circles, this option is called VSED (usually pronounced VEEsed), for voluntarily stopping eating and drinking. It causes death by dehydration, usually within seven to 14 days. To people with serious illnesses who want to hasten their deaths, a small but determined group, VSED can sound like a reasonable exit strategy.

Unlike aid with dying, now legal in five states, it doesn’t require governmental action or physicians’ authorization. Patients don’t need a terminal diagnosis, and they don’t have to prove mental capacity. They do need resolve.

“It’s for strong-willed, independent people with very supportive families,” said Dr. Timothy Quill, a veteran palliative care physician at the University of Rochester Medical Center.

He was speaking at a conference on VSED, billed as the nation’s first, at Seattle University School of Law this month. It drew about 220 participants — physicians and nurses, lawyers, bioethicists, academics of various stripes, theologians, hospice staff. (Disclosure: I was also a speaker, and received an honorarium and some travel costs.)

What the gathering made clear was that much about VSED remains unclear.

Is it legal?

For a mentally competent patient, able to grasp and communicate decisions, probably so, said Thaddeus Pope, director of the Health Law Institute at Mitchell Hamline School of Law in St. Paul, Minn. His research has found no laws expressly prohibiting competent people from VSED, and the right to refuse medical and health care intervention is well established.

Still, he pointed out, “absence of prohibition is not the same as permission.” Health care professionals can be reluctant to become involved, because “they want a green light, and there isn’t one of those for VSED,” he added.

The question grows much murkier for patients with dementia or mental illness who have specified VSED under certain circumstances through advance directives. Several states, including Wisconsin and New York, forbid health care surrogates to stop food and fluids. (Oregon legislators, on the other hand, are considering drafting a bill to allow surrogates to withhold nutrition.)

The question intrigues bioethicists. Can your current competent self cut off nutrition and hydration for your future demented self? In a handful of court decisions, judges have declined to enforce such directives.

Can VSED be comfortable and provide a peaceful death?

“The start of it is generally quite comfortable,” Dr. Quill said he had found, having cared for such patients. The not-eating part comes fairly easily, health professionals say; the seriously ill often lose their appetites anyway.

Coping with thirst can be much more difficult. Yet even sips of water prolong the dying process.

“You want a medical partner to manage your symptoms,” Dr. Quill said. “It’s harder than you think.”

Keeping patients’ mouths moistened and having aggressive pain medication available make a big difference, health professionals say.

At the conference, the Dutch researcher Dr. Eva Bolt presented results from a survey of family physicians in the Netherlands, describing 99 cases of VSED. Their patients (median age: 83) had serious diseases and depended on others for everyday care; three-quarters had life expectancies of less than a year.

In their final three days, their doctors reported, 14 percent suffered pain, and smaller percentages experienced fatigue, impaired cognition, thirst or delirium.

Still, 80 percent of the physicians said the process had unfolded as the patients wanted; only 2 percent said it hadn’t. The median time from the start of their fasts until death was seven days.

Those results mirror a 2003 study of hospice nurses in Oregon who had cared for VSED patients. Rating their deaths on a scale from 0 to 9 (a very good death), the nurses assigned a median score of 8. Nearly all of the patients died within 15 days.

The slower pace of death from fasting, compared with ingesting barbiturates, gives people time to say goodbye and, for the first few days, to change their minds. Several conference speakers described patients who had fasted and stopped a few times before continuing until death.

That’s hard on families and caregivers, though. And slowness won’t benefit people who are dying with severe shortness of breath or pain. “Two weeks is a lifetime in that situation,” Dr. Quill said.

Other obstacles could restrict VSED. A quiet choice in a private home, it could be derailed in nursing homes and assisted living facilities where administrators fear lawsuits or regulatory sanctions. Physicians might decline to participate; home care aides might quit.

Moreover, major religious groups have yet to declare whether they consider VSED an acceptable act of self-determination or a suicide, anathema in most faiths.

Phyllis Shacter and her husband, Alan Alberts, a computer scientist who received a Alzheimer’s disease diagnosis in 2011, had few doubts, however. VSED allowed him to escape the disease that had slowly killed his mother.

No state allows a person with dementia to use a “death with dignity” law, but with support from his wife, doctor and two caregivers, Mr. Alberts, 76, died peacefully at home in 2013 after a nine-day fast.

“I’m glad my husband fulfilled his desire not to live into the final stages of Alzheimer’s,” Ms. Shacter said.

On the other hand, Judith Schwarz, clinical coordinator of End of Life Choices New York, told of an 81-year-old attempting VSED with inadequate pain medication, crying out to his wife at night, “I’m dying of thirst.”

“And of course, he was, but slowly,” Dr. Schwarz said. “This was a horror show.”

Del Greenfield fared better. “She didn’t use any medicines, just some oxygen,” her daughter said. Ms. Greenfield’s children, grandchildren and great-grandchildren came to see her, and “she was completely peaceful, chatting and joking and telling people she loved them.”

She announced that she had one regret. “We all leaned in,” Bonnie Reagan said. “And she said, ‘I wish I’d seen the Rolling Stones the last time they came to Portland.’”

On the fifth day of fasting, “she just fell asleep,” and died about 36 hours later.

Complete Article ↪HERE↩!

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VSED is gaining traction as an end-of-life option

by Xavier Symons

[I]n the past two decades there has been a dramatic increase in political lobbying to legalise euthanasia and/or physician assisted suicide (E-PAS). Yet even when E-PAS is legalised, many people who have been campaigning for the right to end their lives often remain unable to do so as they do not meet the strict eligibility criteria outlined in law (such as having a terminal illness, and having less than 6 to 12 months to live).

In light of this, and other factors, the notion of Voluntarily Stopping Eating and Drinking (VSED) has gained increased attention in policy discussions. VSED — whereby patients refuse food and hydration and indicate that when incompetent they do not wish to receive it — has been described by bioethicists as a mode of ending one’s life that is legal, in line with medical ethics and a moral prerogative of any patient.

Now it seems that VSED is gaining traction in a clinical context. A new article published in the Journal of Palliative Medicine outlines how long term care facilities such as nursing homes and skilled nurse facilities can facilitate VSED while still respecting “resident safety” and “moral objections to hastened death”. University of Washington palliative care doctor David A. Gruenewald describes how facilities that he has been involved in have managed patient requests for VSED. He argues that VSED may be, where the patient’s wish to end their life is persistent, in accord with “resident-centred care”. Gruenewald calls on long term care facilities to develop evidence based guidelines and guidelines for best practice for dealing with requests for VSED.

In another article in the latest edition of the Canadian Journal of Bioethics, lawyer Jocelyn Downie explores the legal status of VSED in Nova Scotia, Canada, arguing that it is a legal alternative for patients who are ineligible for MAiD (such as early stage Alzheimer’s patients, stroke victims, patients with mental illness and patients with debilitating pain but not terminal illness) who nevertheless wish to end their lives.

Last month BioEdge reported on the case of a 65 year old transgender person from Denver, Colorado, who ended his life by VSED after being diagnosed with early onset Alzheimer’s disease.

Complete Article ↪HERE↩!

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A Harder Death for People With Intellectual Disabilities

By TIM LAHEY, M.D.

[S]everal weeks after my patient was admitted to the intensive care unit for pneumonia and other problems, a clear plastic tube sprouted up from the mechanical ventilator, onto his pillow and down into his trachea. He showed few signs of improvement. In fact, the weeks on his back in an I.C.U. bed were making my 59-year-old patient more and more debilitated.

Still worse, a law meant to protect him was probably making him suffer more.

When the prognosis looks this bad, clinicians typically ask the patient what kind of care they want. Should we push for a miracle or focus on comfort? When patients cannot speak for themselves, we ask the same questions of a loved one or a legal guardian. This helps us avoid giving unwanted care that isn’t likely to heal the patient.

This patient was different. Because he was born with a severe intellectual disability, the law made it much harder for him to avoid unwanted care.

In New Hampshire, where I practice, and in many other states, legal guardians of people with intellectual disabilities can make most medical decisions but, by law, they cannot decline life-sustaining therapies like mechanical ventilation. These laws are meant to protect patients with disabilities from premature discontinuation of lifesaving care. Yet, my patient was experiencing the unintended downside of these laws: the selective prolonging of unpleasant and questionably helpful end-of-life care in people with disabilities.

For my patient’s guardian to discontinue unwanted life-sustaining therapies, she had to petition a probate court judge. Busy court dockets being what they are, this can take weeks. Once in court, the judge asks questions aimed at making the right legal decision. How sure is the guardian or family member of the patient’s wishes? What’s the doctor’s best estimate at a prognosis? Often the judge will ask an ethicist like me to weigh in on whether withdrawal is an ethically permissible option. Then the judge makes a decision.

This slow, impersonal, courtroom-based approach to end-of-life decision-making is a far cry from the prompt, patient-centered, bedside care that all of us deserve.

This legalistic approach to end-of-life decision-making also creates unreasonable expectations of legal guardians. Most loved ones have a sense of what the patient they represent would want at the end of life, but they would probably squirm to justify that intuition in a court of law. Yet this is routine for legal guardians of people with intellectual disabilities in my state and others with similar laws. This biases our care toward continuation of what are often uncomfortable, aggressive and potentially unwanted end-of-life treatments.

My patient’s legal guardian was not a family member, but she had known him for years before this hospitalization. She said my patient’s quality of life came from interacting non-verbally with caregivers, listening to music, and eating favorite foods like applesauce. She described the excited hoots he would make when interacting with a favorite nurse.

The contrast to what my patient was experiencing in the I.C.U. was stark. He was sedated. His unsmiling mouth drooped open, a breathing tube between his lips. In place of music, there were the beeps and whirs of the machines that kept him alive. He could not eat. Plastic tubes penetrated every orifice.

Still further, my patient endured the discomforts and indignities that accumulate even in the best I.C.U.s. His muscles grew weaker and stiffer. He developed skin sores and infections. He needed minor surgeries to place the tubes that delivered artificial nutrition and artificial breaths every hour of the day.

Seeing all of this, my patient’s guardian did not think my patient would want to live this way. The I.C.U. can save your life, but it is not where most of us want to die.

In other states, patients with intellectual disabilities have an equal right, via the advocacy of their legal guardians, to avoid unwanted care. A 2010 New York State law, for instance, lets the legal guardians of people with intellectual disabilities withdraw life-sustaining therapies as long as doing so fits the guardian’s sense of the patient’s wishes.

In accord, a policy statement from the American Association on Intellectual and Developmental Disabilities states, “Withdrawing or withholding care may be appropriate in some situations …. Treatment should not be withdrawn or withheld only because a person has a disability.”

This reference to substandard medical treatment of people with disabilities is important. In hospitals across the country, people with disabilities have been subject to all manner of substandard care, including inappropriately premature discontinuation of end-of-life care. This has improved over the past few decades, but a new systematic review shows people with intellectual disabilities still have difficulty accessing high quality end-of-life care, including palliative care specialists. That means the medical system routinely shortchanges people with intellectual disabilities at the end of life, and states like mine add legal insult to that medical injury.

My patient’s caregivers held several multidisciplinary meetings to choose the right way forward. There was consensus that the medical prognosis was dim, and the legal guardian said the patient did not have adequate quality of life. Multiple physicians wrote letters to support a petition to the court to refocus care around comfort and dignity. Ultimately, the legal guardian and the Office of Public Guardian felt they could decline continued intensive care only if it was completely futile, and decided not to submit the petition to the court.

To date, my patient has spent over 140 days in the hospital with little overall improvement. He has endured multiple medical interventions, and unavoidable complications are mounting. Unless the laws change, I.C.U.s across the nation will continue to do the same thing to other patients just like him.

Complete Article ↪HERE↩!