[M]any people are discussing and grieving fashion designer Kate Spade’s death, apparently by suicide. And in these moments, it becomes essential to discussing suicide as safely as possible.
Whether you knew the person who lost their life personally or as a public figure, whether you’re speaking in private, public, or as a member of the press, the way you discuss suicide can affect those around you. By following a few guidelines outlined by suicide prevention specialists and public health practitioners, you can minimize some risks.
What is suicide contagion?
According to the US Centers for Disease Control, suicide rates among adolescents and young adults have increased sharply in recent decades. Suicide is now the second-leading cause of death among young people 10 to 24, and lesbian, gay, and bi-sexual youth are almost five times as likely to have attempted suicide. In a national survey by the National Center for Transgender Equality, 40% of transgender adults reported having made a suicide attempt in their lifetime and 92% of these individuals reported having attempted suicide before the age of 25.
Adolescents and young adults who die by suicide are less likely to be clinically depressed or to have certain other mental disorders that are important risk factors for suicide among persons in all age groups, says the CDC. This reality has motivated research on other preventable risk factors for suicide among young people.
“One risk factor that has emerged from this research is suicide ‘contagion,’ a process by which exposure to the suicide or suicidal behavior of one or more persons influences others to commit or attempt suicide,” the CDC explains. “Evidence suggests that the effect of contagion is not confined to suicides occurring in discrete geographic areas. In particular, nonfictional newspaper and television coverage of suicide has been associated with a statistically significant excess of suicides. The effect of contagion appears to be strongest among adolescents, and several well publicized ‘clusters’ among young persons have occurred.”
How to talk about suicide
According to the National Alliance on Mental Illness, there are three primary tips to follow when discussing suicide with peers or on social media:
Colloquial as the phrase “committed suicide” has become, it’s inappropriate because it’s largely linked to the Catholic doctrine that suicide is a mortal sin. So by saying someone “committed suicide,” you can unintentionally imply that this person committed a kind of crime.
Excluding graphic details of the way someone took their life is advised because doing so can glamorize the act, and become triggering for those who are living with depression or suicidal ideation. The same principle applies to describing suicide notes, or locations of death, which can be especially damaging when the person who has taken their life is famous, as the general public’s fixation with learning all the details can easily make the tragic, deeply complex act seem more like a television drama.
How to write about suicide as a reporter and on social media
The imperative to discuss suicide safely is particularly important for journalists, as media descriptions feed impressions of a public figure’s death. According to ReportingOnSuicide.org, “more than 50 research studies worldwide have found that certain types of news coverage can increase the likelihood of suicide in vulnerable individuals. The magnitude of the increase is related to the amount, duration, and prominence of coverage.”
Organizations such as Samaritans and the CDC, provide highly specific media guidelines and the research behind why careful language can help prevent contagion. Here are some of the most-cited guidelines reporters, producers and social media contributors should follow:
Keep your writing concise and factual. This helps avoid simplistic explanations for suicide. “Suicide is never the result of a single factor or event, but rather results from a complex interaction of many factors and usually involves a history of psychosocial problems,” explains the CDC. “Public officials and the media should carefully explain that the final precipitating event was not the only cause of a given suicide. Most persons who have committed suicide have had a history of problems that may not have been acknowledged during the acute aftermath of the suicide. Cataloguing the problems that could have played a causative role in a suicide is not necessary, but acknowledgment of these problems is recommended.”
Do not glorify or sensationalize suicide. “News coverage is less likely to contribute to suicide contagion when reports of community expressions of grief (e.g., public eulogies, flying flags at half-mast, and erecting permanent public memorials) are minimized. Such actions may contribute to suicide contagion by suggesting to susceptible persons that society is honoring the suicidal behavior of the deceased person, rather than mourning the person’s death,” the CDC continues. The CDC cites the danger of repetitive and ongoing coverage and the presentation of details or dramatic photographs related to the suicide, including photographs of the funeral, the deceased person’s bedroom, or the site of the suicide.
Do not only focus on the deceased person’s positive qualities. “For example, friends or teachers may be quoted as saying the deceased person ‘was a great kid’ or ‘had a bright future,’ and they avoid mentioning the troubles and problems that the deceased person experienced,” writes the CDC. “As a result, statements venerating the deceased person are often reported in the news. However, if the suicide completer’s problems are not acknowledged in the presence of these laudatory statements, suicidal behavior may appear attractive to other at-risk persons—especially those who rarely receive positive reinforcement for desirable behaviors.”
Highlight research based on data. Instead of referring to recent suicides as “epidemic” or “skyrocketing,” describing a suicide as inexplicable or “without warning,” or quoting and interviewing police or first responders about the causes of suicide, discuss suicide as a public health issue backed by the most recent CDC statistics and less colorful words like ‘”rise” or “higher,” ReportingOnSuicide.org advises. Avoid oversimplifying the causes or perceived triggers of suicide—like a single accident, loss of job, breakup, or bereavement.
While some people who die by suicide do not display warning signs, the vast majority do. Share links to organizations like the National Alliance on Mental Illness, which provide detailed education on suicide warning signs and risk factors.
Provide suicide prevention resources. While people often avoid discussing mental health issues, talking about suicide is key to preventing it. Any reporting on suicide should include the message that depression is treatable, suicide is preventable, and ending the stigma around mental health requires honest dialogue. Resources such as Crisis Text Line and the American Foundation for Suicide Prevention provide education, resources, and crisis intervention. These resources are free of charge and available any hour of the day:
[I]n order to solve what could be called a worldwide shortage of dead bodies, researchers at Montpellier university’s medical school in France have created a virtual cadaver using 3D scanners. The process involved dissecting the chosen area of a real cadaver down through eight levels, and taking a 3D scan at each level thereby enabling it to be recreated on a computer screen for a novice student to dissect, virtually.
The use of virtual cadavers in place of the real thing is not a new concept: from the beautiful wax Anatomical Venuses of 18th-century Italy, popularised by Clemente Susini, to the intricate papier-mache anatomical models of Louis Auzoux in 19th-century France, there has long been a need to supplement dissection with less friable analogues made of paper, wax, plastic and soft metals. Even recently we have seen the increase in usage of plastination in medical schools (as well as on public display), virtual dissection tables and the synthetic cadaver – or SynDaver – made from a variety of complex realistic tissues. But the question remains, are these substitutes as effective as the real thing? Not really.
In order to work on humans – alive or dead – one has to become familiar with the huge variety of physical differences. And, of course, a clean, silicon cadaver, minus slippery adipose tissue and blood, is very different from the reality of the human body in all its glory. That said, cadavers donated to medical schools are heavily embalmed and also lack a certain element of realism: they are far paler and solid than flesh and don’t bleed. In addition, one of the reasons many people who would like to donate their body to medical schools don’t have their wish fulfilled is because the acceptance criteria are very stringent.
However, one of the often-overlooked benefits of using real cadavers during study is that they have a power and an agency that fakes and fabrications do not. They teach potential doctors to revere the human body and to treat the dead with dignity, something that plastic or pixels cannot.
Ultimately, these tools are useful to supplement learning, but they will never fully replace the real thing. And a donated cadaver is a precious gift indeed.
[O]ne of my clearest childhood memories is of my father washing his face. He did so in a most particular way, with a vigor and thoroughness that made me feel somehow cleaner for simply having watched him. In the mornings, while he got ready for the workday, I’d sit on the toilet seat brushing my teeth as he went through the various stages of his ablutions. This was in the early nineteen-seventies, when we lived in a low-end red brick rental complex near the Sound in New Rochelle. Our second-floor apartment was a small two-bedroom with a living-dining area and a worn galley kitchen. It had one cramped bathroom, its dulled chrome fixtures speckled with rust and the tiles coming loose in spots, but even my mother wasn’t fretting too much. We were just a couple of years landed in the country, and this was as suitable a place as any. My kid sister and I loved the playground and grassy field that the apartment overlooked—you could check who was out there and sprint down in a breath—and my mother appreciated the southeast-facing windows, as drafty as they were, for the brightness they let in. My father was settling into his first doctoring position, as a staff psychiatrist at the Bronx V.A. hospital, and although extra money was scarce, our family was moving up in the world.
My father would turn on the taps until the water ran warm and then liberally splash himself as he bent over the basin, sprays of water dotting me. Like seemingly all Korean men back then, he wore a ribbed tank top beneath his dress shirts, and the shoulder straps would get a little damp as he wet his face and ears and neck. He built up a load of soapy lather and got to work, roughly polishing the sides of his nose and his cheeks in a circular motion and radiating outward to his ears, using his index fingers and thumbs to scrape the nooks and whorls. Making a rake of his fingers, he scoured behind his ears, then shifted to the back of his neck, tilting his head slightly to each side to bare it for forceful soaping. Next, he rotated the bar of Ivory in his hands to replenish the lather, which he needed for cleaning the rest of his face—his eyelids and his temples and his angling, broad forehead, unwrinkled then, going foamy and white. Sometimes he liked to frighten me by turning quickly and opening his eyes wide and flaring his lips, this snowy beast, and then smile when I began to whimper, and although my heart detonated each time, I liked it, too, for the way it was him and not him and him again, in the span of a gasp.
He’d wash away the suds with great handfuls of water, dousing himself while briskly rubbing his skin once more, and you would wonder why he didn’t just take a shower instead. Maybe it was because he was a refugee during the war and grew up in the harsh times afterward, but bathing every day was a habit neither he nor my mother had yet developed. I can imagine them both waiting in line for their brief turn at a cold-water spigot, poised to clean themselves as swiftly and as fully as they could.
On the weekends, I often showered with my father, and he showed me how to rub tiny dark rolls of grime from my forearms and from the scallops of my heels, and then scrubbed my shampooed scalp so hard it would tingle long afterward. My favorite part was when he dried my hair, his method not to blot and rub, as you normally would, but to hold each end of the smallish towel and whip the middle back and forth against my head to flick away the dampness. No plush bath towels for us.
Forty-five years later, I would be washing him, Parkinson’s having rendered his body stiff and frail, his mind loitering elsewhere. With both hands he held the shower bar as I sponged his flanks and hosed him off with the sprayer. I washed his face, too, but with my hands, if more gently than he probably wanted. I tried not to get soap in his eyes. When he was dying, I was far away and couldn’t get to him in time. The hospital morgue staff let me see him. He lay on a gurney with a sheet drawn up to his chin. There was his mouth, in a slight pinch. His sunken cheeks. His forehead was cold wood against my lips. He smelled sterile, almost clean. It wasn’t him. ♦
[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.
“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.
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.
[G]rief is a natural response to losing someone or something that’s important to you. You may feel a variety of emotions, like sadness or loneliness. And you might experience it for a number of different reasons. Maybe a loved one died, a relationship ended, or you lost your job. Other life changes, like chronic illness or a move to a new home, can also lead to grief.
Everyone grieves differently. But if you understand your emotions, take care of yourself, and seek support, you can heal.
What Are the Stages of Grief?
Your feelings may happen in phases as you come to terms with your loss. You can’t control the process, but it’s helpful to know the reasons behind your feelings. Doctors have identified five common stages of grief:
Denial: When you first learn of a loss, it’s normal to think, “This isn’t happening.” You may feel shocked or numb. This is a temporary way to deal with the rush of overwhelming emotion. It’s a defense mechanism.
Anger: As reality sets in, you’re faced with the pain of your loss. You may feel frustrated and helpless. These feelings later turn into anger. You might direct it toward other people, a higher power, or life in general. To be angry with a loved one who died and left you alone is natural, too.
Bargaining: During this stage, you dwell on what you could’ve done to prevent the loss. Common thoughts are “If only…” and “What if…” You may also try to strike a deal with a higher power.
Depression: Sadness sets in as you begin to understand the loss and its effect on your life. Signs of depression include crying, sleep issues, and a decreased appetite. You may feel overwhelmed, regretful, and lonely.
Acceptance: In this final stage of grief, you accept the reality of your loss. It can’t be changed. Although you still feel sad, you’re able to start moving forward with your life.
Every person goes through these phases in his or her own way. You may go back and forth between them, or skip one or more stages altogether. Reminders of your loss, like the anniversary of a death or a familiar song, can trigger the return of grief.
How Long Is Too Long to Mourn?
There’s no “normal” amount of time to grieve. Your grieving process depends on a number of things, like your personality, age, beliefs, and support network. The type of loss is also a factor. For example, chances are you’ll grieve longer and harder over the sudden death of a loved one than, say, the end of a romantic relationship.
With time, the sadness eases. You’ll be able to feel happiness and joy along with grief. You’ll be able to return to your daily life.
Do I Need Professional Help?
In some cases, grief doesn’t get better. You may not be able to accept the loss. Doctors call this “complicated grief.” Talk to your doctor if you have any of the following:
Trouble keeping up your normal routine, like going to work and cleaning the house
Thoughts that life isn’t worth living, or of harming yourself
Any inability to stop blaming yourself
A therapist can help you explore your emotions. She can also teach you coping skills and help you manage your grief. If you’re depressed, a doctor may be able to prescribe medicines to help you feel better.
When you’re in deep, emotional pain, it can be tempting to try to numb your feelings with drugs, alcohol, food, or even work. But be careful. These are temporary escapes that won’t make you heal faster or feel better in the long run. In fact, they can lead to addiction, depression, anxiety, or even an emotional breakdown.
Instead, try these things to help you come to terms with your loss and begin to heal:
Give yourself time. Accept your feelings and know that grieving is a process.
Talk to others. Spend time with friends and family. Don’t isolate yourself.
Take care of yourself. Exercise regularly, eat well, and get enough sleep to stay healthy and energized.
Return to your hobbies. Get back to the activities that bring you joy.
Join a support group. Speak with others who are also grieving. It can help you feel more connected.
Here’s a question we all have to answer sooner or later: What do you want to happen to your body when you die? Funeral director Caitlin Doughty explores new ways to prepare us for inevitable mortality. In this thoughtful talk, learn more about ideas for burial (like “recomposting” and “conservation burial”) that return our bodies back to the earth in an eco-friendly, humble and self-aware way.