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

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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!

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.

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!

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.”

Complete Article HERE!

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!

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!

‘My dad gave us a gift’

Daughter opens up on father’s medically assisted death

Jen Wiles, far left, and Shanaaz Gokool, CEO of Dying with Dignity Canada, second from the right, pose with other speakers ahead of an end-of-life speech on Saturday, June 2, 2018.

By Zach Laing

[A]s with thousands of other Canadians, Robert Wayne Nelson had the chance to die on his own terms.

Nelson’s earlier diagnosis of Parkinson’s disease was enough to handle in the years leading up to his spring 2016 diagnosis of progressive supranuclear palsy — a disease his daughter, Jen Wiles, described as Parkinson’s “evil big brother.”

Doctors didn’t know what to do. The severe brain disorder holds no effective treatments.

However, as a biologist throughout his life, the then-71-year-old had always followed legislation surrounding medical assistance in dying.

“My dad was the first medically assisted death in our community,” said Nelson’s only daughter, Wiles, of her father who died on Feb. 15, 2017, in Camrose.

“He really understood that there was a place for this — not that he ever thought he would use it.”

In February 2015, the Supreme Court of Canada ruled in Carter v. Canada that parts of the Criminal Code prohibiting doctor-assisted death would need to change to satisfy the Canadian Charter of Rights and Freedoms.

The ruling opened the door for medical assistance in dying and on June 17, 2016, federal legislation allowed people to die on their own terms, under certain circumstances.

In October 2017, Health Canada released numbers showing there were 2,149 medically assisted deaths in Canada between Dec. 10, 2015, and June 30, 2017.

As of April 30, 2018, Alberta Health Services reported 364 Albertans had received medical assistance in dying — of those, cancer, multiple sclerosis, ALS and advanced lung disease are the most-cited health conditions.

Those who wish to end their life on their own terms must have a grievous and incurable condition. Then, they have to make their initial request before two required assessments, followed by a 10-day waiting period — one that can be waived.

Wiles said their fight for her father to undergo doctor-assisted death was a challenging one.

“We didn’t have community support because of our faith-based community, which was really challenging,” said Wiles.

Robert Wayne Nelson pictured in an undated photo, died with medical assistance on Feb. 15, 2017.

“It was really hard to find assessors in central Alberta.”

It took nearly a year for Nelson to get his wish of assisted death, but it was something that left his family at peace.

“Despite the fact that we went through this really challenging couple of months … for us, it was really good,” said Wiles.

“The outcome for our family was positive — it was what he wanted. After his death we felt good, which is a strange thing to say. We did everything with him. We went to the funeral home, we picked up a column burial together, we did all this stuff with him.

“Through all those months, we came to a place that was really kind of beautiful and we have felt good since. We were able to really grieve ahead of time. He was relieved, we were relieved. We got up the next morning and we felt good.”

Knowing he was able to go out on his own terms only help the family he left behind.

“He did not want to go into palliative care, he did not want to see the end of his disease process,” she said.

The day after Nelson died, Wiles’ mother went to her coffee group sharing the story of the day before.

There, a woman who lost her husband nine years prior to a terrible battle with cancer wept openly as she wasn’t able to be over the trauma of his death.

“My dad gave us a gift — we didn’t have to watch that suffering,” said Wiles.

“He already couldn’t write, couldn’t read, he couldn’t be on the computer, couldn’t talk on the phone. All the beautiful things he did with his life, he couldn’t do anymore.”

Shanaaz Gokool, CEO of not-for-profit Dying with Dignity, explained ahead of a Saturday speaking event marking two years since the practice became legal how the process can be different for everybody.

“The more precarious your health is, the greater chance you have of losing capacity and therefore you can lose the right altogether. Medical assistance in dying is a life-affirming treatment,” she said, noting in communities that are less prepared, it’s more difficult to find support.

“Assisted dying for those left behind can be the gift of no regret.”

For those in small communities like the one Nelson lived in, the process for medically assisted death can be a frustrating one.

However, those living in major centres like Toronto can go through the process start to finish in one day.

Gokool said the next step for the country is looking at opening up the legislation to make medically assisted deaths easier and more accessible.

“The problem is that the legislation uses deliberately vague language and it excludes many hundreds and possibly thousands more. We have different interpretations from one end of the country to the other in terms of the eligibility criteria,” she said.

“Then we have different access issues people are having — hurdles and obstacles in their way.”

Complete Article HERE!

‘It was a good death, the kind most people would choose’

Sophie Mackenzie on why her family backed her mother’s decision to stop eating and drinking when faced with terminal cancer

By Sophie Mackenzie

[I]t was late evening on a Monday in April, the end of a bright autumn day in Johannesburg, when Mum died. The nurses who were caring for her had made her comfortable for the night, turning her on to her side with a pillow to cuddle, the way she liked to sleep. My sisters Vicky and Jassy and I were with her. We held her hands, told her how much we loved her, and that it was safe and right for her to go. After a few minutes, her breathing stopped. It was a good death – the kind of death I think most people would choose if we could: free from pain and surrounded by love. She wasn’t hooked up to tubes or monitors; she was even wearing her own pretty nightdress rather than a hospital gown. I suppose it’s what you’d call a natural death. But in one way Mum’s death was exceptional, shocking even. She had decided to die, about 10 days before, and for the previous six days had had no food and almost no water. She had chosen to die of thirst.

The story of Mum’s death begins in September 2008, when she sent an email to her daughters, telling us that she had been diagnosed with colon cancer. “Don’t worry about me, darlings,” she wrote – but it was clear that she herself was desperately worried: about loss of dignity, about the cost of her medical care, about whether Dad would be able to learn to make his favourite spaghetti bolognese if she was unable to cook for them both – all the details of death. In the event, after a frightening and rocky few weeks and major surgery, Mum recovered well, and by the beginning of this year we had all started to make plans to celebrate her 80th birthday in August. With Mum and Dad’s five daughters living so far apart, times when we were all together are rare and precious.

Then, at the end of February, came a letter from my eldest sister Emma in place of Mum’s normal Sunday email. “Mum isn’t feeling great,” she wrote, “and she asked me to write so you wouldn’t worry.” But, of course, we instantly did begin to worry, and it was only a few days before the diagnosis we’d dreaded arrived. Mum’s cancer had metastasised and spread to her brain and possibly also to her lungs. Her oncologist immediately set her on a course of radiotherapy and cortisone to shrink the tumours, telling us that it would take up to two weeks before we knew whether the treatment had been effective.

Vicky, who has experience caring for the terminally ill, travelled to Johannesburg to help Mum and Dad, and they had long and honest talks about the decisions Mum faced. She wasn’t quite ready, she said at first, to leave Dad, “this beautiful world”, as she put it, and us. But over the next few days, Mum’s condition began to deteriorate, and she became increasingly uncomfortable and frustrated. Mum was a very private person. She loved order; she hated mess and squalor, and illness is often messy and squalid. She told Vicky again and again that she didn’t want to go through more treatment. She didn’t want Dad to see cancer killing her. She wanted to die quickly and quietly. She didn’t want any fuss.

It was Emma who first told Mum about an article she’d read several years earlier in the Journal of the American Medical Association about voluntary refusal of food and drink as a means of bringing about death in the terminally ill. The author described it as a relatively painless way to die: a gradual slipping away into a coma, followed by death. Typically, a person will take between five and 10 days to die this way and, crucially, they have the option to change their mind and stop the process until almost the end. Mum just latched on to the idea, Emma remembers. She decided that she was going to stop taking the cortisone that was keeping the tumours in check, and stop eating and drinking as well. She wasn’t going to let the disease take over.

Like many people, I simply didn’t know that choosing to stop eating and drinking is, as Jassy put it, “a Thing”. But it is – it’s a thing about which you can find pages and pages of information on the internet, once you have a reason to Google it. It’s a thing that’s been reported quite extensively in medical literature, known variously as VSED (Voluntary Stopping Eating and Drinking), VRFF (Voluntary Refusal of Food and Fluid), PRNH (Patient Refusal of Nutrition and Hydration), or self-dehydration. It’s a thing doctors who have practised for a long time and seen many patients die at home describe as “taking to their bed” or “turning their face to the wall”. It’s a thing that was explored and argued by lawyers acting for the man known publicly as Martin, whose case was recently heard alongside Tony Nicklinson’s. It’s a thing, as I discovered when researching this article, that people seem afraid to talk about.

‘She wanted the kind of death most people would choose, if we could’ (from left): Jassy, Juliet, Sophie, Emma and Vicky with their parents.

There is nothing illegal about refusing food and drink; in fact, feeding a competent person against their will constitutes assault. Nonetheless, Mum was afraid that something would happen to prevent her reaching her goal. She worried about falling and breaking a hip, ending up in hospital and being caught in a spiral of intervention that would prolong her life. She worried that intravenous nutrition and hydration would be given to “keep her comfortable” if she became unconscious. She had signed a living will expressing her preferences, but such advance directives are generally regarded as worthless unless the dying person has a supportive medical team who understand their wishes and are prepared to act upon them.

South Africa’s legal position on assisted dying is fundamentally the same as Britain’s: if you help another person bring about their death, you could risk prosecution. As in the UK, there have been attempts to clarify the law on end-of-life decision-making processes, removing the grey areas that currently exist. Professor Willem Landman, CEO of the Ethics Institute of South Africa, is one of the leading figures campaigning for a change in the law. He explains that in 1998, President Nelson Mandela commissioned a report into the legal and ethical issues surrounding assisted dying, assisted suicide and euthanasia, but after being tabled in parliament in 2000, the report was ignored by the ministry of health. Landman believes this may be because the then minister of health, Dr Manto Tshabalala-Msimang, regarded the issue as something of a middle-class problem. Perhaps it is. When birth and death are less medicalised and a more integral and familiar part of life, perhaps choice in such matters seems an unnecessary luxury. Perhaps mothers do die gently, cared for by their daughters, without worrying about indignity and fuss. But they don’t die quickly, or without pain.

Mum had always talked frankly to us about death. My sister Juliet remembers when she was a little girl and terrified of dying, Mum telling her, “Your body is like a suit of old clothes – by that time you will be tired of it and you won’t want it any more.” Mum hated clutter and hoarding; when a thing had outlived its usefulness, it was to be disposed of without sentiment, whether it was a favourite dress the moths had got to, a book that was falling apart at the spine or her own body. She made it clear to us that she would far rather be dead than be a burden on her husband and daughters. Now, with her hands becoming increasingly unsteady and fits of dizziness coming unexpectedly, she was finding the colostomy bag she’d had since her surgery in 2008 difficult and humiliating to deal with. She felt that her body was wearing out and, more frighteningly, her head felt heavy and fuzzy.

Over the course of a long phone call, Vicky told me that Mum had made a decision. She was going to stop taking the medication that was checking the spread of her cancer, and stop eating and drinking, too. We had about a week to say goodbye, so Juliet and I flew to Johannesburg as soon as we could. It was the sort of family reunion Mum loved, and in many ways it was like all the other happy times we have spent together, filled with love and laughter. We planned meals together, cooked in Mum and Dad’s tiny kitchen, ate and drank together, just as we’ve always done on family holidays, over Christmases and at other celebrations – only this time it was Mum’s life we were celebrating, while she went through the process of dying.

It was the most remarkable week of my life, and it has left me unafraid of death.

I’d been afraid of seeing Mum since this latest illness. I was expecting to find her diminished, somehow less herself. But I was amazed by how well she seemed. Vicky had cropped her hair so that she wouldn’t have to experience it falling out, and Mum, with the pride in her looks that beautiful women never lose, was obviously upset by her appearance. But to me she looked lovely. She shone with happiness at having all her daughters there with her and Dad. She was full of her usual curiosity and humour. She didn’t look like someone who was ready to die, and this frightened me – what if somehow stopping eating and drinking didn’t work, and Mum lingered on in pain? What if the process didn’t take a matter of days but a matter of weeks? Part of me knew how much she would hate to be thwarted in her intent; part of me longed to keep her with us for longer, and hoped that, even now, some sort of miracle might happen. I even suggested to Mum that she should stay at home for a few days, just to see how she felt, but she was adamant: her decision had been made. The next day, she was going to move to the nursing home at the retirement community where she and Dad lived, and she was going to die there.

Although Mum was unable to walk unsupported and her hands were very shaky, she was alert and lucid, chatting to us as she always had. Her appetite was small, but she was still enjoying food: pizza with olives and anchovies, strong cheddar cheese, the fruit cake Juliet had baked and been saving for Mum’s 80th birthday. Juliet’s cake was the last thing Mum ate, on Wednesday 28 March, when her brother visited to say goodbye, and she had a last chat with her sister in the UK. We were all in tears that morning, except for Mum, who stayed calm and cheerful.

I didn’t see Mum leave her home for the last time. Dad, Emma, Juliet and Vicky were with her, and Juliet cried afterwards when she told Jassy and me how Mum had gone around the little house where she and Dad had been so happy, saying goodbye to it and all her precious things, before being driven the few hundred yards to the nursing home. The staff there welcomed her and settled her into bed, and she curled up and went to sleep.

It’s fortunate that Mum was surrounded by people who supported her decision. Her GP believes that people at the end of their lives should have the right to be “conductors of their own orchestra”, and made it plain that she would prescribe whatever pain relief Mum needed to mask the symptoms of her advancing cancer, and whatever sedation she required to alleviate distress. The management of the nursing home hold the same view. Her GP gave them written instructions explaining Mum’s decision and outlining the care she would need. “She is a very brave lady,” the email concluded. And, of course, Mum had five daughters who adored her and a husband who’d worshipped her for almost 60 years, and we were all unequivocally on her side.

The five of us sisters rallied behind Mum and Dad; we were a team. As I write this, it’s difficult to isolate my own feelings and experiences from those of my sisters – who said what, who made decisions, who cried. It’s a gruesome analogy, but the five of us, Dad, Mum’s GP and her carers were like a cheerleading squad urging her on towards the goal she had chosen. This isn’t always the case. I was horrified to read a 2011 report in the New York Times which told the story of Armond and Dorothy Rudolph. The Rudolphs, both in their 90s and with failing health, made the decision to end their lives together by stopping eating and drinking while they were still mentally competent and able to live independently. The management of the assisted-living facility where they had their home responded by attempting to evict them. It was only after intervention by the couple’s family, the local press and medical and legal experts that the attempt was stopped. Armond Rudolph died after 10 days without food and drink, and Dorothy a day later.

We laughed a lot over the next few days. We teased Juliet about developing late-onset colour-blindness when she kept putting bottles of red wine in the fridge, while the white stayed warm on the kitchen counter. Jassy and I speculated macabrely about what would happen if the nurses forgot to take down the “Nil by Mouth” sign over Mum’s bed after she died – we imagined some poor old dear being moved into her cubicle and waving plaintively as the tea trolley rattled unheedingly past. Emma and Juliet still haven’t let me forget the nightmare 10-mile walk I dragged them on around the suburbs of Johannesburg, possibly the world’s least pedestrian-friendly city. One night after dinner, Emma and Juliet went to visit Mum, and the three of them chatted and reminisced until eventually my sisters were asked to leave – their laughter was keeping the other old ladies awake.

In the midst of Mum’s death, our normal lives went on. I was writing a seemingly endless list of product descriptions of cheeses – I’d hoped that Mum would have enjoyed working with me on them; a writer herself, she would have embraced the challenge of describing the differences between stilton and roquefort. But she was too drowsy, although she loved being read to. We planned each day as it came: who would be spending time with Mum, and when; who would cook, and what, and for how many. Of course we talked about Mum and what was happening, sharing our fears about what the next few days would hold, and our happy memories of her. Often, it felt just as if she was there with us, as she always had been when the family was together.

There were hard parts, too. By Friday, although Mum was still spending a lot of time asleep, her waking hours were difficult. She was dreaming, she told us, about drinking ice-cold Coke, and waking feeling desperately thirsty, as one does with a bad hangover. Chips of ice helped to relieve the dryness in her mouth, and she had sugar-free mints to suck as well as frequent glycerine mouth swabs, but the thirst remained. She also developed a pounding headache as her blood sugar level fell. Emma bought her some Coke, thinking that the occasional sip would make her more comfortable and do little or nothing to prolong her life. But Vicky, determined to support Mum completely in her decision, said, “It could set her back days!” and took it away, leaving the nurses crying in her wake. That day, Mum said to us, “I didn’t realise it would be so hard.”

She wasn’t the only one. Being a spectator at the death of someone you love is bitterly hard. We expect medical science to intervene to relieve suffering, and to a great extent it does. But the journey is a lonely one. Even surrounded by the people who loved her most, and professionals who gave her the very best palliative care, Mum fought her battle for death alone. How much more lonely, and how much more frightening, the process must be for people who aren’t supported by their family, or aren’t able to communicate their wishes, I can only imagine.

Mum spent a lot of the next three days asleep, but when she was awake, we chatted to her and to each other, and Jassy read to her from her new novel, which is dedicated to Mum. She also enjoyed having her hands massaged with her favourite body lotion as her skin began to get dryer, and the scent greeted us when we came into the ward to see her. Dad was his usual self: strong, serene and often silent, surrounded by his five chattering daughters, but occasionally cracking us all up with his characteristic dry wit. He spent a lot of time at Mum’s bedside, sitting with her while she slept. Mostly, it was a peaceful and happy time.

On Sunday, Mum began to slip away. In the morning she was still alert, asking for ice to suck and chatting to us almost normally, but by the evening she was no longer able to speak easily. I’d had a bad cold for the previous few days, and when I heard the new rattle in Mum’s breathing, I became convinced that she had caught it and my virus was going to be the thing that finally carried her off. I sat by her bed and cried my heart out – a mixture of guilt, grief and all the stress of the last few days just pouring out of me. I felt embarrassed by my tears in the face of Mum’s courage – absurdly, I didn’t want to worry her. She asked me several times, “Am I going to be all right?” I told her that she was, and that I loved her. There wasn’t anything else to say. That was the last time she spoke.

For most of the six days it took her to die, Mum was in no pain. The morphine patches she had been prescribed relieved any symptoms her advancing cancer might have caused, and the sedatives kept her calm and drowsy. However, it’s not known whether such palliative care actually removes the dying person’s experience of hunger and thirst, even once they have lost consciousness. A paper published in the Journal of Medical Ethics in 2011 concluded that “continuous deep sedation may blunt the wakefulness component of human consciousness without eradicating internal affective awareness of thirst and hunger”. I hope that, for Mum, the dreams of ice-cold Coke and the sensation of thirst stopped once she fell asleep on that Sunday night.

On Monday morning, Mum was moved from the main ward where she had spent the past five nights. The curtains around her bed had remained closed while she was there – Mum would have wanted the privacy, we knew, but still we speculated darkly about whether the staff had kept her hidden in case the other ladies got ideas and decided to emulate her. Her new bed was in a private room. She barely woke when she was lifted, and she was losing the ability to swallow. In the afternoon, the vicar came to say the last rites, with all five of us sisters and Dad there, perching on her bed and chairs around it. Mum seemed to be aware of the words of the service – perhaps owing to the vicar’s maximum-decibel delivery, which we all laughed about afterwards – but she was sliding deeper and deeper into unconsciousness.

That evening passed slowly, as time does when you’re waiting for something important to happen. I carried on with my writing – the cheese product descriptions were complete and I’d moved on to fish, and it was comforting to escape into work. Emma and Juliet were spending the night at home with Emma’s partner and his children. Dad did a crossword puzzle; Vicky made a batch of chicken soup, using Mum’s recipe. Over dinner we talked about the practical things that would soon need to be done, and decided that Vicky would be the one to phone the undertaker, and that she would remove and take care of Mum’s rings and watch. We asked Dad if he felt it was important for him to be there when Mum died, but he felt that he had already said a very temporary goodbye – he was, and remains, confident that they will be together always once he joins her. So Jassy, Vicky and I took the familiar route up to the nursing home to see how Mum was and decide what to do about spending the night with her. It was the last time we’d walk that way; within a few minutes of our arrival, she was dead.

I went back to Jassy’s house that night and wrote about Mum’s death. My overwhelming feelings were relief and pride – my brave, beautiful mother had taken on the hardest challenge of her life, and won. I could go home to my partner, whom I missed desperately, my home in London and my little cat. My sisters and Dad felt the same, I think: tired, but triumphant, too. We’d achieved what we had set out to do, as sisters and as a family.

Even if Dignitas had been a practical option for Mum, I don’t believe she would have chosen it. Apart from anything else, she loathed travelling. (I suspect she would also have regarded the cost as a wanton extravagance.) But what if there had been another way for her to take? An injection administered by a doctor she trusted, or pills brought to her by Dad or one of us? I’m not sure. Perhaps she wouldn’t have wanted anyone else to bear the responsibility of having ended her life. Also, I think part of her relished the challenge, the control and the independence of doing it the hard way.

In the obituary that was read at Mum’s funeral, Vicky remembered a saying that Mum was fond of quoting: “Old age is not for sissies.” Mum was no sissy – as Emma put it later, Mum was a soldier. She embarked on her final journey with steely determination, astonishing courage and immense dignity. I feel honoured to have been a part of the process. I’ve seen that it is possible to choose and achieve a good death, on one’s own terms. I used to be in favour of changing the law on end-of-life choices; now I am evangelical about the importance of autonomy in terminal illness and death. I’m so proud of what Mum did, and of how my father, my sisters and I helped her to achieve it. But that doesn’t alter my passionate belief that people in Mum’s position, or Tony Nicklinson’s, or Martin’s, should have more, better and easier choices.

Complete Article HERE!