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.
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.
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.
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.
Finalize your business and financial affairs, make funeral and memorial plans, and gather your family members to share memories and say your good-byes.
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.
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.
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.
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.
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.
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.
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.
[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.”
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.
[H]awaii recently joined the growing number of states and countries where doctor-assisted dying is legal. In these jurisdictions, help to die is rarely extended to those who don’t have a terminal illness. Yet, increasingly, very old people, without a terminal illness, who feel that they have lived too long, are arguing that they also have a right to such assistance.
Media coverage of David Goodall, the 104-year-old Australian scientist who travelled to Switzerland for assisted dying, demonstrates the level of public interest in ethical dilemmas at the extremities of life. Goodall wanted to die because he no longer enjoyed life. Shortly before his death, he told reporters that he spends most of his day just sitting. “What’s the use of that?” he asked.
Research shows that life can be a constant struggle for the very old, with social connections hard to sustain and health increasingly fragile. Studies looking specifically at the motivation for assisted dying among the very old show that many feel a deep sense of loneliness, tiredness, an inability to express their individuality by taking part in activities that are important to them, and a hatred of dependency.
Of the jurisdictions where assisted dying is legal, some make suffering the determinant (Canada, for example). Others require a prognosis of six months (California, for example). Mainly, though, the focus is on people who have a terminal illness because it is seen as less of an ethical problem to hasten the death of someone who is already dying than someone who is simply tired of life.
Why give precedence to physical suffering?
Assisted dying for people with psychological or existential reasons for wanting to end their life is unlikely to be supported by doctors because it is not objectively verifiable and also potentially remediable. In the Netherlands, despite the legal power to offer assistance where there is no life-limiting illness, doctors are seldom convinced of the unbearable nature of non-physical suffering, and so will rarely administer a lethal dose in such cases.
Although doctors may look to a physical diagnosis to give them confidence in their decision to hasten a patient’s death, physical symptoms are often not mentioned by the people they are assisting. Instead, the most common reason given by those who have received help to die is loss of autonomy. Other common reasons are to avoid burdening others and not being able to enjoy one’s life – the exact same reason given by Goodall. This suggests that requests from people with terminal illness, and from those who are just very old and ready to go, are not as different as both the law – and doctors’ interpretation of the law – claim them to be.
Sympathetic coverage
It seems that the general public does not draw a clear distinction either. Most of the media coverage of Goodall’s journey to Switzerland was sympathetic, to the dismay of opponents of assisted dying.
Media reports about ageing celebrities endorsing assisted dying in cases of both terminal illness and very old age, blur the distinction still further.
One of the reasons for this categorical confusion is that, at root, this debate is about what a good death looks like, and this doesn’t rely on prognosis; it relies on personality. And, it’s worth remembering, the personalities of the very old are as diverse as those of the very young.
David Goodall died listening to Beethoven’s Ode to Joy.
Discussion of assisted suicide often focuses on concerns that some older people may be exposed to coercion by carers or family members. But older people also play another role in this debate. They make up the rank and file activists of the global right-to-die movement. In this conflict of rights, protectionist impulses conflict with these older activists’ demands to die on their own terms and at a time of their own choosing.
In light of the unprecedented ageing of the world’s population and increasing longevity, it is important to think about what a good death looks like in deep old age. In an era when more jurisdictions are passing laws to permit doctor-assisted dying, the choreographed death of a 104-year-old, who died listening to Ode to Joy after enjoying a last fish supper, starts to look like a socially approved good death.
[I] killed my dog last year. Mika was a shelter mutt, so she was around 10 or 12 years old; I can’t be sure. Twelve dog years would have put her at around 80 human years, which is a pretty good run. But what’s strange about having a dog is how quickly they age relative to us – they start out younger than we are, catch up for a time, and then pass us by, declining into their twilight years, all in the space of a decade or so. As witnesses to that accelerated timeline, having a pet means that we often end up experiencing their eventual demise and learning something about death in the process.
Mika was a great dog. Obviously abused before ending up at the shelter, she had scars on her head when I rescued her and, whenever I took a broom or rake in my hand, she would cower in fear. She was easily overwhelmed when other dogs came up to sniff her, and would often growl defensively. But with time she grew to be less apprehensive and almost pathologically affectionate, if there is such a thing with animals, demanding to be petted by anyone who happened to be near. She was a great companion watching TV on the couch during my single years, and she helped me win the attention of the woman, a veterinarian, who would eventually become my wife. In fact, my wife has often joked – and maybe it isn’t a joke at all – that she would never have gone out with me in the first place if I hadn’t had a dog.
For whatever reason, the way I’d always pictured the proper death of one’s dog was like a scene taken from the 1957 Disney film Old Yeller (1956): after years of steadfast companionship, when man’s best friend no longer derives joy from chasing rabbits and can barely lift his head, his owner has to muster the resolve to get out the rifle to put him out of his misery. Although an oddly bucolic fantasy for someone living in Los Angeles, at least part of it was no doubt influenced by how I’d learned to think about death as a physician.
In human medicine, we’re used to implementing any and every life-saving intervention right up to the very end. As a medical intern 20 years ago, I remember thinking about the futility of that approach with patients in pain and suffering from multisystem organ failure, sustained only by machines and a regimen of some 30 or 40 medications, and unlikely to ever make it out of the hospital. What was the point? Whatever happened to quality of life? But those reservations be damned, we never gave up, and among the interns who transferred care to each other from shift to shift, the dictum of patients ‘not dying on my watch’ was something to which we all held fast.
As long as there were no ‘Do Not Resuscitate’ orders in the chart asking us to withhold ‘heroic efforts’, we rarely considered doing anything less to prolong life, and financial cost was never part of the equation either. As far as hastening death, that was never even mentioned. After all, the original Hippocratic oath states: ‘I will neither give a deadly drug to anybody if asked for it, nor will I make a suggestion to this effect.’
[W]hen Mika, who’d had hip dysplasia from the start, developed increasing difficulties walking and was in obvious pain much of the time, my wife and I put her on medications and even tried acupuncture, which helped for a while. But one day, at the start of our morning walk, she ambled to the end of the driveway, sat down, and refused to go on despite me pulling the leash. It was the same the next day and the next, so I stopped trying. It was at that point that my wife first brought up the possibility of putting her down, but that seemed ridiculous to me because between Old Yeller and my experiences as a human doctor, I envisioned Mika struggling through the pain, fighting for her last breath to the very end. In other words, it didn’t seem right to think about letting her go because she hadn’t yet suffered enough.
As a veterinarian, my wife viewed things altogether differently. To her, putting our dog to sleep didn’t represent throwing in the towel as it seemed to me, but a compassionate way to preempt unnecessary but inevitable pain and suffering down the line. As she saw it, we owe this option to our pets as stewards of their care, especially given that animals can’t understand pain or decide for themselves just how much suffering they are willing to tolerate.
Indeed, the American Veterinary Medical Association Guidelines for the Euthanasia of Animals (2013) acknowledges that ‘there is no consensus on when it is appropriate to let [a] life go’, but notes that: ‘Euthanasia may be considered to be the right course to spare [an] animal from what is to come … if medical intervention would only prolong a terminal condition, or if current health conditions cannot be successfully mitigated.’
When we were dating in the years before we got married, my wife would often come home from a long day at work and say: ‘I killed my patient today.’ This, I came to understand, was a kind of self-reproachful statement of defeat as well as a starkly factual statement that reflected how she’d actually administered the medications that ended a dog or cat’s life that day, typically with tearful owners and their bawling children huddled around.
This strange admixture of guilt from failing to save a life, along with the resolve to be the agent that takes it, comes with the territory in a veterinary clinic where euthanasia is a daily occurrence. Although euthanasia literally means ‘good death’, it was totally foreign to me in my training as a physician. Human doctors might feel guilty losing a patient in the end, but that guilt is almost always tempered by the reassurance that while we might have lost the battle to cancer, nature, God or whatever, we did everything we could in the process. Being a physician means that doctors must sometimes admit defeat, but in doing so, we don’t go on to be the hand of death.
[A]s time went on, medications and acupuncture had less of an impact on Mika, and her hind legs would often give out so that she would walk only a limited distance before collapsing. She seemed to be slipping cognitively too, and one day even fell into the swimming pool while we were away at work, requiring rescue from a neighbour. In what seemed like a short amount of time, her muzzle turned fully grey, and she would often sigh heavily with a distant look in her eye. Finally, she began to lose control of her bowels, with increasingly frequent accidents around the house.
And so, discussions about euthanasia became more about ‘when’ than ‘whether’.
The difference in attitudes towards euthanasia for animals and human beings is understandable. After all, people have been killing animals without remorse for food, to avoid becoming food ourselves, and for sport long before we began domesticating animals or keeping them for companionship. Whereas traditional Judeo-Christian and Islamic teachings include strong proscriptions against murder and suicide for humans, religious doctrine questions the animal soul. And while euthanasia is used as an ethical means to preempt suffering in veterinary medicine, it’s not unusual for some owners to simply abandon their pets by the side of the road, put puppies in garbage bags, or refuse to pay for life-saving medical procedures based on both economics and expediency. No wonder the expression ‘die like a dog’ has historically referred to the most miserable of ends.
In 2009, US legislation that would have allowed physicians to be compensated by Medicare for providing voluntary counselling to patients about options for end-of-life care was defeated due to political uproar over ‘death panels’. And yet, as I discuss in the World Journal of Psychiatry in 2015, human euthanasia is being increasingly considered and sanctioned both in the US and abroad. As life-extending medical advances over the past 50 years have fuelled growing concerns about prolongation of suffering and loss of autonomy, the euthanasia movement of the 1930s has gained momentum, evolving into the modern ‘right to die’ and ‘death with dignity’ movements that challenge us to consider what constitutes a ‘good death’. Today, some form of voluntary active euthanasia – death by administration of a lethal dose of medication to avoid pain and suffering – is legal in several states in the US, as well as in Japan and parts of Europe including Belgium, Luxembourg, Switzerland and the Netherlands.
Still, if the historical divide between our attitudes towards euthanasia for humans and for animals is narrowing, the devil in the details of cultural sanctioning involves who can actually administer, or is willing to administer, the medications that end life. With existing legislation to date, the sanctioned individual – whether a physician, family member, some neutral third party, or the person seeking to end their own life themselves – varies by jurisdiction. Although ‘death with dignity’ is increasingly supported in many parts of the world, often neither doctors nor patients seeking death want to ‘push the plunger’ and take responsibility for being the hand of death. In this sense, euthanasia remains a hot-potato issue in human medicine.
Consequently, we now find ourselves debating a range of possible end-of-life care options, including passive euthanasia (withholding life-sustaining interventions including food or water), physician-assisted suicide (providing the means for a patient to end their own life), and active voluntary euthanasia (administering a lethal medication to a patient). Palliative sedation is an increasingly popular option within medicine, which involves administering medications that are intended to relieve suffering through sedation and pain control to the point of possible unconsciousness. Although death is a potential side effect, palliative sedation avoids the moral objections of suicide and euthanasia through the ethics of the so-called ‘double effect’, which argues that death is an acceptable outcome if unintended and in the primary service of relieving suffering among the terminally ill. Pushing the envelope of what it means to die a ‘good death’ for humans even further, my colleagues at the University of California, Los Angeles have been investigating the use of psychedelic drugs such as psilocybin to relieve anxiety and depressive symptoms and to find meaning at life’s end.
[A]fter hemming and hawing for weeks, my wife and I finally decided to pick a date to have Mika put down. We asked a veterinarian friend to perform the euthanasia in our home. On the agreed day, it was my wife who put off making the call until I couldn’t take it any longer, and had to prod her to do so. The vet came to our house, started an intravenous line, and filled a syringe with Euthasol as we sat on the floor by Mika’s bedside, petting her with long strokes and saying our tearful goodbyes.
When we were ready, I asked if I could push the plunger, and the vet allowed me to place my hand with hers as we did it together. I was worried that Mika might show signs of discomfort, but seconds after the medication went in, she simply took a single, long, deep breath, and then let it out slowly for the last time.
People attend a House Oversight and Government Reform Committee business meeting at the Rayburn House Office Building in February 2017 for a discussion of D.C.’s Death with Dignity Act.
By Mary Klein
I am dying of ovarian cancer. I do not know how long I have to live. I have endured radical surgery, 65 chemotherapy treatments, countless trips to the emergency room and admissions to the hospital to extend my life. Now, my illness has developed resistance to treatments, and the last two drugs did not slow the growth of my tumors. I can die from a combination of chemotherapy and cancer or from just the cancer itself. I recently decided to cease treatment and pursue palliative care so I can minimize my suffering and maximize the quality of life that I have left with my wife, Stella, and our beloved dog, Adina.
I love my life, but now I need to plan for my death. I would like the option of medical aid in dying, which is authorized under D.C.’s Death with Dignity Act and that took effect in February 2017 for those terminally ill patients who meet strict requirements. The law allows mentally capable terminally ill adults with six months or less to live to get prescription medication they can decide to take if the suffering becomes unbearable, so they can die peacefully in their sleep, at home, surrounded by loved ones.
March 23 was a wonderful day for me and other terminally ill D.C. residents. President Trump signed an omnibus spending bill that did not include a House-passed provision to repeal the law or an administration proposal to thwart funding of its implementation.
Coincidentally, March 23 also was the 20th anniversary of the first prescription for medical aid in dying in the nation, under the Oregon Death With Dignity Act, the model for medical aid-in-dying laws in the District and five other states.
Before the federal spending bill was enacted, I lived in a state of uncertainty. I feared that opponents would be successful at invalidating the law. Fortunately, they were not. The law has been upheld, and the D.C. Department of Health issued rules last June to implement it, but health-care providers have not done the work necessary to allow patients such as me to use it. The threat that the law might be repealed made it unrealistic for doctors, health-care systems and pharmacists to invest the time to develop policies to participate in it. The D.C. Department of Health confirmed at its performance oversight hearing in February before the D.C. Council, at which I testified, that not one resident has obtained a prescription since the law that took effect more than a year ago.
Now, almost two months after the hearing, I still cannot find a physician who is willing to write a prescription for medical aid in dying. I and other terminally ill residents in the District need a compassionate doctor to come forward and embrace this option for dying.
I have been surprised at how many people, including physicians, do not know that medical aid in dying is now legally authorized in the District. Assumptions that congressional opponents would defeat the law brought its full implementation to a standstill.
Now that the immediate threat of the law’s repeal is over, I would like to encourage the D.C. Department of Health to work with health-care advocacy organizations such as Compassion & Choices, which helped implement the Oregon law, to launch an education campaign here and put the law into action. This collective effort would require working with D.C. doctors, health-care systems and pharmacists not only to explain the rules but also to consider any changes to ensure that the law does not discourage participation. Terminally ill patients need to know that medical aid in dying is an option.
It also took five months after the Oregon law went into effect for the first doctor to write a prescription. Once he did, others followed. Oregon now has an end-of-life care system that recognizes this compassionate option for dying.
More than a dozen safeguards in the D.C. law have been time-tested for a combined nearly 40 years in states that have authorized medical aid in dying without a single documented case of abuse or coercion. The D.C. rules are more complicated than those in other states, which might make it harder for terminally ill D.C. residents such as me to access this option to die peacefully in their sleep, at home, surrounded by loved ones. The result would be needless suffering.
It’s time we make compassion the priority of this law.
