Tag: End of Life Care

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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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Palliative Sedation, an End-of-Life Practice That Is Legal Everywhere

Jennifer Glass, a well-known San Francisco public relations executive, asked her husband, Harlan Seymour, to photograph her every day after her lung cancer diagnosis. Glass, an aid-in-dying advocate, died under palliative sedation in 2015, a year before a new California law allowing medically assisted suicide took effect.

By: Michael Ollove

Toward 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.”

Elizabeth Martin, standing between her cousin Tamra Halfacre, left, and sister Anita Freeman. Martin, who had colon cancer, died in 2014 under palliative sedation administered to relieve intractable pain. While aid-in-dying is legal in seven states and Washington, D.C., palliative sedation, in which terminally ill patients are rendered unconscious to relieve intractable suffering, is legal everywhere in the United States.

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.”

Jennifer Glass with her husband, Harlan Seymour, after she was diagnosed with cancer.

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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Patient-Physician Discordance Shows Need for Better Communication on End-of-Life Care

At the end of life, patients and physicians both have their own goals when it comes to care and treatment; however, researchers from Case Western Reserve University and Flatiron Health have found that those goals are sometimes at odds with one another.

BY Jessica Skarzynski

At the end of life, patients and physicians both have their own goals when it comes to care and treatment; however, researchers from Case Western Reserve University and Flatiron Health have found that those goals are sometimes at odds with one another.

In a study presented at the American Society for Clinical Oncology (ASCO) Annual Meeting, Sara Douglas, Ph.D., RN, and her colleagues evaluated the discordance between the goals of both patients and physicians, and how it can negatively impact quality end-of-life care.

The idea for this study was born from the researchers’ initial work examining physician and patient goals of care at end of life in the intensive care unit (ICU). “We found that there was a fair amount of disconnect between what the physicians’ goals were and the families’ goals were,” Douglas, who was lead author on the study, said in an interview with CURE.

However, she added that their initial research was missing the patient voice. “Because the patients couldn’t speak for themselves, we had their surrogate decision makers – which was usually a family member – determine what they thought the patient wanted,” Douglas added. “We didn’t know, really, what the patient was thinking.”

So, Douglas and colleagues took this basic framework and applied it to a situation where they had the greatest opportunity to understand both the patient and physician point of view consistently over time.

In a longitudinal design study that ran from January 2015 to July 2017, 378 patients with stage 4 gastrointestinal (66 percent) or lung (34 percent) cancers and their oncologists were surveyed at enrollment and again every three months for the next 15 months, or until the patient died.

Using a visual analog scale where one end indicated survival and length of life as most important (100 points) and the opposite end indicated that quality of life and comfort were most important (0 points), participants were asked to move a toggle along the continuum to represent their goals at each specific point in time. Discordance between patient and physician scores was defined as an absolute difference of more than 40.

Neither group could see the other’s responses, but Douglas noted the disparities were striking. “We had some scores where the difference was 92 points – one response was 100 and the other was 8. We had a lot of variability in terms of physician and patient responses,” she added.

In total, 168 patients (44 percent) died after an average of 6.5 months after enrollment; however, their results were still presented. At the last assessment prior to death, 32 percent of the patients and their physicians reported having discordant goals. Of these cases, 60 percent of patients had more survival-focused goals compared with 40 percent of doctors. Lastly, 77 percent of pairs with discord at enrollment still had discord at the last assessment before death.

When the physicians were asked what they believed patients’ goals of care were, there was only a 27 percent discord in what the patients’ actual goals were. “Physicians, when asked what their understanding is of what the patient wants, assume it’s the same thing the physicians want themselves,” Douglas said. “This is called false consensus bias, (meaning) I assume you agree with me unless there’s evidence to the contrary.”

Douglas did note that extreme discordance was not the norm. “If you think about it, 27 percent of the dyads were in sharp disagreement, but that means that 73 percent were in agreement to some degree,” she added.
Douglas acknowledged that these findings highlight the need for patients and their physicians to have clear discussions and come to a better understanding, so that patients will receive end-of-life care that is consistent with what they want. But if communication is key, where should it start?

Research has shown that patients often expect physicians to bring up these topics. But due to many factors, including the physician’s comfort levels when dealing with these topics, these discussions may not take place. So, Douglas and her team have begun a new study where they share the information and record the discussion to better understand why each party feels the way they do, and then see if either patient or physician changes their goals.

Ideally, they hope to create a model that empowers patients to take a more involved role in starting these discussions. “If patients can at least have access to […] what their physicians are thinking and why, they can at least make an informed decision,” Douglas said.

“That decision may be that they choose to disregard that information, but at least they’re making an informed decision.”

Complete Article ↪HERE↩!

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What Is a ‘Good Death’?

By R. Scott Rappold

When Beth Wood’s cancer returned in 2014 after 20 years of remission, she made an instant choice: no chemotherapy, radiation, or other life-altering treatments that could only stave off the inevitable.She told her husband so much in the same breath as informing him the cancer was back, after what was supposed to be a routine visit to the doctor.

“She made a decision to say, ‘I’m not going back through that again. I want quality of life, not quantity,’ ” says her husband, David Wood, of Tennessee. “And we were given almost 3 more years.”

They traveled the country, spent a final Christmas with the children and grandchildren, and when she died at the age of 65 on Dec. 29, 2016, it was peaceful, at home, with Beth secure in her faith she was going to a better place. It was, says her widower, a “good death.”

“I thought a lot about those two words. I think to understand death, you have to understand the life of the person. For her, she was not scared of death,” he says.

It’s a concept more Americans, from the elderly to the terminally ill to the doctors who care for them, are embracing. Eight states have passed laws allowing doctor-assisted suicide, although a judge recently overturned California’s 3-year-old law. Conversations about death, once taboo, are now held around the world at so-called Death Cafes. Before former first lady Barbara Bush died in April, she received support on social media when she decided to forgo further medical treatments.

After all, at no point in history have people lived as well as Americans today. So, more people are asking: Why shouldn’t we focus on the quality of our death as well?

Aid-in-Dying Laws

By the end, Kathy Myers couldn’t even get out of bed on her own. A lifelong smoker in Aurora, CO, she had chronic obstructive pulmonary disease.

There were no more bike rides with her husband, no more trips to the mountains, no more working in her garden, no more doing anything without an oxygen tank. So when Colorado voters approved doctor-assisted suicide in 2016, she was determined to use it. But because of misunderstandings or a reluctance to act under the new law, they had a hard time finding a doctor willing to act on it.

“What I came up against was a lot of ignorance. Our family doctor said it was going to take court orders and years before we could opt for that,” says her husband, Herb Myers.

After the couple pleaded for help through local media, a doctor got in touch and made a house call, agreeing that Kathy met the criteria under the new law: a prognosis of less than 6 months to live and sound mental capacity. A second doctor confirmed, as required by the law, and on March 12, 2017, Herb emptied 100 capsules of Seconal into a glass of Gatorade.

They held hands as she drifted into unconsciousness. A short time later, a hospice nurse confirmed she had no vital signs. It was, Herb said, “very gentle and very quick.” She would’ve been 63 the next day.

In the first year of Colorado’s law, 69 people were prescribed aid-in-dying drugs by 37 different doctors, and 78% of them were able to die at home, according to the Colorado Department of Public Health and Environment.

Nationwide, the movement has come a long way since Jack Kevorkian was sent to prison in 1999 for assisting in patient suicides. Oregon in 1994 became the first state to pass an aid-in-dying law, which has been used more than 1,000 times. In that state, Catholic groups and other conservatives remain opposed, although they are not actively fighting the law.

Sam DeWitt is the Colorado access campaign member for Compassion and Choices, a Denver-based nonprofit that advocates for such legislation around the country. The organization and its staff and volunteers have worked to educate doctors about the new law. They find the most opposition in rural areas and at medical facilities with religious affiliations or out-of-state ownership. Medical facilities can opt out of the law, prohibiting their pharmacies from filling such prescriptions or such deaths occurring on the premises, but they can’t forbid doctors from taking part.

“It really is a two-pronged approach to getting acceptance. We need the patients to know their rights and to be willing to have a hard conversation with their doctor, but we also need to educate the doctors … so the patients feel comfortable discussing it and the doctors feel comfortable prescribing or referring them to someone who will prescribe it,” DeWitt says.

After Kathy Myers’ story made headlines, Herb Myers’ phone rang constantly with people asking for help finding a doctor. Those calls don’t come anymore as the process in Colorado has gained more acceptance. And while he misses his wife of 38 years, he has no regrets.

“Anything else we did would have just prolonged her life and her suffering. I think it was the right thing to do,” he says. “I think everybody should have the right to go the way they want.”

Talking About Death

Sarah Farr is an end-of-life doula in the Washington, D.C., area. While doulas are better known for providing help for births, Farr hosts regular meetings known as “Death Cafes” for people to discuss this once taboo topic. Other end-of-life doulas work one-on-one with people who are dying, helping them memorialize their lives and plan their deaths.

“I think in America, we live in a very youth-centered culture, a very kind of anti-aging culture. There’s a lot of denial of death. We don’t usually see people die in our homes anymore,” Farr says. Becoming and end-of-life doula has become popular, with 18 training sessions being held around the country in 2018 alone, according to the International End of Life Doula Association.

According to Deathcafe.com, on any given day there could be half a dozen such meetings around the country. Farr put out chairs for 15 at the last gathering she hosted; 50 people showed up. Discussions run the gamut of death-related concepts, and attendees range from young people to the elderly. Most have experienced a death, and Farr sees them looking for some control over what is essentially uncontrollable: their own deaths.

“A lot of people want to maybe share stories of a death they witnessed. People say, ‘If I could have a say in it, this is how I’d want to die,’ ” she says.

“Choosing [the] day and time of our deaths; it’s just something we don’t have control over. But that doesn’t mean we can’t plan for it if it was to happen, in terms of using hospice care, dying in a hospital versus dying at home, exploring different things you can do with your body after you die, discussing home funerals.”

Of course, a “good death” could be something different for each person. Emily Meier, PhD, a clinical psychologist at UC San Diego Health, recently studied research from around the world on death and identified 11 core themes for a good death. Among these were a lack of pain, religious and emotional well-being, a feeling of life completion, dignity, closeness of family, and quality of life. Being able to die at home is also a strong desire.

Meier said a “good death” is different for each person, but talking about it in advance is the best way to make it happen. No matter the age, she encourages people to prepare advance directives, wills, and other end-of-life documents and share their wishes with loved ones.

“If the conversations are ongoing, and even when you’re healthy, if you have conversations about, ‘What’s most important to me at this point in my life?’ a lot of those things are going to stay the same at the end of life,” Meier says. “The more we talk about it earlier, the less scary it becomes because it’s very challenging to have those conversations in the last moments and trying to scramble together to make sure people are having, so to speak, a good death.”

The Hospice Alternative

Most people think of hospice as a place people go to die. At Alive Hospice in Nashville, it’s where they go to live as well as possible until they die.

Chief medical officer Robert Berkompas, MD, said the nonprofit hospice has only 55 beds but treats 4,000 patients a year with a prognosis of 6 months or less to live. Most of the care is done at home by a team of nurses, doctors, counselors, and others who work in a variety of health care fields.

“We actually ask them: What are their expectations? What are their desires? It’s fairly common they don’t want to suffer physically, with pain and nausea and swelling, so we address all that,” Berkompas says.

But what if they only want to stay alive long enough for an upcoming wedding? What if their treatment plan has side effects that make their final days unbearable?

“We let the patient direct as much of their perception of what a good death would be and work with that,” he says. “If we can give them a great deal of control within the hospice environment, I hope we’re giving them the best of both worlds.”

As a doctor trained to always fight illness, it required a change of philosophy. Berkompas works with other doctors to help them get away from the treat-at-all-costs approach.

“When we say, ‘I really don’t have any more treatment for that illness that is effective or promising,’ I can say, ‘But I still have a treatment for you.’ It’s going to be helping you through this process of dying, and hopefully it will be a good death and not spending your final days in an ICU or a hospital.”

For David Wood, whose wife declined aggressive treatment for her terminal cancer, Alive Hospice made all the difference in making her final months bearable. Nurses visited the home every other week, giving her medication to deal with the pain. And when she couldn’t get out of bed on her own, a nurse came. If he had questions at 2 a.m., he called and someone from the hospice answered. It gave him the confidence to keep her in the house and be her caregiver until the end.

It was the most intimate time in their 43 years of marriage.

“She wanted me to live again, to love again, to play again,” said David, who has since remarried.

“She was comfortable. She told me, ‘David, I am not scared about where I’m going because I know who I’m going to.’ ”

“Hospice just gave me and her the confidence to have a good death. To me, it’s to make the transition from this world to the next.”

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Implantable defibrillators may cause dilemmas for older patients

By Carolyn Crist

Defibrillators implanted in the body to kickstart the heart can be lifesaving for some people, but as patients age they may face difficult conversations about when to replace or deactivate the devices.

Conversations about end-of-life care, in particular, can drive a wedge between patients and doctors and create difficult decisions for families, an international team of cardiologists writes in the American Journal of Medicine.

“The standard consent process does not fully inform patients receiving (the device) about all the downstream implications,” said co-author Dr. Arnold Eiser, an adjunct fellow at the Center for Public Health Initiatives at the University of Pennsylvania in Philadelphia and a professor of medicine at Drexel University.

Implantable cardioverter defibrillators (ICDs) differ from pacemakers, which control abnormal heart rhythms. Pacemakers prompt the heart to beat at a normal rate through electrical pulses, whereas ICDs monitor heart rhythms and shock the heart to prevent sudden cardiac arrest.

Older patients may face a difficult choice of when to stop using an ICD, especially if shocks become painful or it continues life longer than desired, said Eiser.

“Downstream decisions include whether the device no longer serves the patient’s best interests,” he told Reuters Health by email. “We believe a well-informed patient is an important aspect of ethical medical practice.”

The informed consent process could prompt this conversation, the study authors note. When patients agree to surgery for a device, they should be aware of the benefits and risks, and the information should be presented in a way that families can easily understand. Current consent forms tend to concentrate on short-term risks and benefits rather than broader device-related issues that may emerge later in life, the authors write.

By talking about advance care planning and next-of-kin choices regarding heart care and treatment options, doctors can document what a patient’s wishes are before facing a clinical crisis at the end of life. Regular conversations during check-ups would help as well.

“It will be better to prepare all parties for the decisions that come into play as the patient’s medical condition changes,” Eiser said. “It is an unusually complex decision, but it’s not always presented in that way.”

The decision-making process should be clarified as well, the authors urge. Older patients often listen to advice from authority figures such as their doctors. This may lead to a bias toward implantation.

Instead, ICD decisions should include the patient’s multifaceted health conditions and the future effects on wellbeing, prognosis and end-of-life, the authors write. The patient’s primary care physician and cardiologist should be included in conversations with the patient and family.

“We have to have an ongoing discussion with these patients about the possibility of deactivation,” said Dr. Annika Kinch-Westerdahl of Danderyds Hospital in Stockholm, Sweden, who wasn’t involved in the essay.

Kinch-Westerdahl and colleagues have studied the high risk of painful shocks ICD patients may feel near the end-of-life. They’ve also researched what cardiology, internal medicine and geriatric specialists understand about ICDs. Although cardiologists were well-versed in the risks and benefits, most internal medicine and geriatric doctors needed more training.

“We need to support our patients in their choices throughout their lifespans, not only at a point when they have to accept a new treatment – but also when it is time to terminate an existing treatment,” she told Reuters Health by email.

To maintain communication with ICD patients and their families, primary and cardiac care teams should appoint a doctor to stay in touch and regularly check on the patient’s decisions. Systems should be in place in primary care and specialist offices to make sure staff know how to manage ICD devices, talk about them, and reprogram or deactivate them when needed, the authors write.

“It’s important that patients are aware that turning it off is an option, especially as their goals of care shift to the end-of-life,” said Dr. Rachel Lampert of the Yale School of Medicine in New Haven, Connecticut, who wasn’t involved in the paper.

“The important question is how to improve communication between patients and their physicians,” she told Reuters Health by phone. “We all need to feel comfortable talking about it.”

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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.

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