[F]or many years now, pollsters have asked Americans where they would rather die, in home or in a hospital.
Once the initial shock of the question wears off (“Who said I was going to die in the first place? How dare you!”), most of us answer that we would prefer to die at home, in familiar settings, surrounded by loved ones. It makes sense.
Then, of course, most Americans go off and die in the hospital, in large part because they haven’t made their end-of-life wishes known to people who might have to make those decisions. (Or, in the alternative, because they haven’t thought that much about their end-of-life decisions in the first place.)
Oregon is an exception. And that’s a good thing.
recent article in The New England Journal of Medicine noted that nearly two-thirds of Oregonians who died in 2013 did so at home, as opposed to 39.6 percent of Americans. (The article relied on statistics from Medicare and defined “home” as wherever the person was living at the time of death.)
The article, by Dr. Susan W. Tolle, head of the Center for Ethics at Oregon Health & Science University, and Dr. Joan M. Teno of the University of Washington, had other good news for Oregon residents who might die someday:
The rate of intensive care unit use in the last 30 days of life in Oregon was 18.2 percent, as compared with 23 percent in Washington state and 28.5 percent in the rest of the United States.
Patients who were hospitalized in the last month of life were more likely to be discharged to their homes in Oregon (73.5 percent) than in Washington (63.5 percent) or in the rest of the United States (54.2 percent).
These numbers likely will not surprise anyone who’s followed Oregon’s efforts to lead the way in the tricky issue of end-of-life care. In their article, Tolle and Teno argue that one big step forward came in 1995, when Oregon created a POLST program.
POLST is an acronym for Physicans Orders for Life-Sustaining Treatment; the program essentially allows patients to document their preferences regarding the use of life-sustaining treatment. Ideally, medical providers have access to a patient’s POLST documents and abide by their instructions.
But just having a POLST program in place is not enough, the article notes: After all, Washington state has a similar program, but it trails Oregon in some of the metrics that Tolle and Teno were tracking.
The difference between the two states? At the risk of oversimplifying, a lot of it comes down to execution and follow-through.
In the decades since Oregon adopted the POLST program, the state has developed educational materials about it, organized conferences to spread the word, researched the issue and (perhaps most importantly) maintained a statewide registry of POLST participants. That electronic registry allows medical providers throughout the state to access it to check on a patient’s wishes at the end of life; that’s important because those patients may not always be able to speak for themselves.
Washington had a registry in place, but abandoned it because it wasn’t widely used.
Oregon’s POLST system isn’t perfect: For example, Tolle and Teno note that one-click access to the POLST form from a patient’s electronic medical records is not yet available in most hospitals. We need to keep measuring our progress and improving our systems.
Perhaps the best part of filling out the POLST forms is that it provides a starting point for conversations that are easy to put off. No one likes talking about death. But talking about it now might help ensure that we can die on our own terms.
Noel Conway, who has motor neurone disease, and his wife Carol want to change the law on assisted dying
By Rosemary Bennett
[T]he daffodils are in full bloom outside the cozy Shropshire cottage where Noel Conway prepares for his day in court, spring sunshine streaming through the window.
Typing has become too difficult for the 67-year-old. He can just about manage with a specially-adapted mouse, but has invested in the eye-gaze technology made famous by Stephen Hawking. He is finding it hard going. “I’m so slow. I don’t know how he ever wrote a book using it. But I am preparing for what I know lies ahead,” he says.
This highly articulate, retired adult education lecturer knows it is only a matter of time before he loses his powers of speech. Like Professor Hawking, Mr Conway has motor neurone disease. Unlike the physicist, he won’t live with the illness for years to come. This will probably be his last spring.
It is not death that alarms him but the process of dying. The suffering in the last months and weeks of life for those with MND is notorious. Bit by bit, neurons stop communicating with one another, resulting in difficulty moving, speaking, swallowing and eventually breathing. Mr Conway wants to have the right to say when enough is enough and die in some degree of comfort.
He cannot take his own life — he has not got the strength, and under the current law no one can help him die without risking prosecution and imprisonment. Which is why tomorrow Mr Conway and his wife Carol will take a judicial review to the High Court. Despite his poor health, he will be there in person.
Diagnosed in November 2014, his illness has progressed rapidly, particularly in the past few months. Having lost the power and feeling in his arms in the first stages of the illness, in November the former mountaineer, skier and cyclist caught an ordinary winter bug. “That finished off what strength I had left in my legs,” he said. He now relies on a hoist and uses a power wheelchair.
He can no longer clean his teeth or scratch his head. He gets stuck on his back in bed at night and has to call out for his wife to help him. He wears a ventilator much of the time.
On the plus side, he is still able to talk and does so with intelligence and passion. And he can still eat and drink with help, and the use of a one-way valve straw. “I draw the line at wine, though. I’m not drinking that out of a tumbler and straw.” He refused to have a tube fitted into his stomach for feeding. “The day I cannot eat and drink . . . well I don’t want to be here anymore.”
Noel Conway in 2008. He thinks it is wrong that the wealthy can afford to use Dignitas while others must continue to suffer
However, it is the thought of not being able to move, an inevitability, being trapped in a totally paralysed body, that he finds most harrowing. “I know that when I’m absolutely rigid and immobile, can’t speak or breathe, I want to be able to say right, it’s time to go,” he says. “I do not want to be trapped in a tiny cell inside a pyramid with the sides closing in on me.”
That fear prompted Mr Conway to join Dignitas, the Swiss clinic which offers medically-assisted dying to the ill and disabled. More than 40 Britons end their lives there each year and no one has ever been prosecuted for helping a loved one make the journey there. It is, in effect, a legal form of assisted suicide for the wealthy.
“It was a relief to join. I felt I needed to take control,” he said.
However, he feels there is something fundamentally wrong if the wealthy have an option that no one else has. His entire life he has tried to fight for those who have had no voice. He was a councillor in Blackburn in his early 20s and during his career championed the cause of those who missed out on education first time round to have another chance.
“Only a small number of people can afford Dignitas,” he says. “The fees are about £7,500 and you have to get there on top of that. So it is prohibitively expensive for many. It is inequitable.” It is this passion for fairness that has led him to take his case to court.
Supported by the campaign group Dignity in Dying and having raised £30,000 through crowdfunding, his legal team will ask the court to declare that the blanket ban on assisted dying under the Suicide Act 1961 is contrary to his human rights. They will argue that as a terminally ill, mentally competent adult, his right to a private life includes the right to make decisions on the end of his life.
He has a good case.
The most recent assisted-dying case was taken by Tony Nicklinson, who suffered locked-in syndrome. Although the Supreme Court finally rejected his case, judges were sympathetic and urged MPs to consider changing the law. Mr Conway will argue that they have not done this in any serious way despite polls suggesting overwhelming public support for change. MPs held a brief Friday afternoon debate on a private members’ bill on the issue in September 2015, then voted it down.
“I must say, I am appalled at the way a considerable number of MPs did not even engage with the issue, which is a very serious one for our time,” Mr Conway says.
Cave of Coffins at Beit Shearim National Park in Israel is believed to be the final resting place of Judah Ha-Nasi, a talmudic sage whose maid assisted him in dying.
[A] close friend passed away recently — no doubt among the first people to take advantage of California’s End of Life Option Act. Signed into law in 2015 and in effect as of June 9, 2016, the law gives terminally ill adults who have only six months to live the ability to request and obtain life-ending medication.
My friend had a virulent form of prostate cancer. He lived with it for a few years, but when the tumors began to invade almost every part of his body, he entered hospice and requested the drugs. He wasn’t sure he would take them, but when the pain kept getting worse and it became obvious that the end was near, he made his decision. He died peacefully with his family at his side.
Along with California, only Oregon, Washington, Vermont, Montana, Colorado and Washington, D.C., support medical aid in dying. Now, with the recent tide of conservatism, opponents of medical aid in dying are moving quickly to attack the option.
The law was challenged in Riverside in August, but a judge denied the request for an injunction filed by a group of anti-choice physicians. The Montana House of Representatives was considering a bill that would have allowed the state to execute doctors for prescribing end-of-life medication. The bill was narrowly defeated on March 1. The nominee to the Supreme Court, Judge Neil Gorsuch, wrote a book on how to defeat death-with-dignity bills, suggesting the option violates the Constitution.
I have always been a strong advocate of death with dignity. I first became involved in this issue several years ago, when my mother found out she had ALS, a devastating neurological disease. She was 77, a refugee from Hitler’s Germany, and knew what was in store. She asked me to help her.
I spoke to her doctor, who said he might be able to “put her under” if her distress became unbearable. We left it at that, until hospice became involved. When I told them about the agreement, they said they could not support it and would now monitor the amount of morphine in the house.
At a loss, I did research and found an organization called Compassion & Choices. They came to visit my mother and me, and told us what she could legally do to take control of her death in New York. She would have to acquire the appropriate life-ending medication, and take it while she was still functional. Like most patients in her situation, she was relieved to know what she could do, but ended up dying on her own.
All religions take a stand on this issue. There is no question that Jewish law and tradition reject suicide, prohibit murder and accept pain and suffering as a part of life. The tradition is less clear when it comes to a person who is already dying of a terminal illness.
The Talmud tells the story of the death of a great sage, Rabbi Judah Ha-Nasi. The rabbi is suffering greatly but his students are praying with fervor in the courtyard to keep him alive. Out of compassion for his suffering, his maidservant drops a jar from the rooftop, stunning the students into silence, at which point the rabbi dies.
This story has been used to justify the removal of life support, validating the patient’s right to a death with dignity, without pain and suffering. Judaism also usually considers palliative care an appropriate measure if someone is suffering at the end of life. But most Jewish traditions end there.
If we allow caregivers to remove life support, and to provide palliative care, why can’t we give the terminally ill the tools for a peaceful death? The states that support the legislation have very strict safeguards in place, and patients must take the life-ending medications themselves, after they have been prescribed by a physician for that purpose.
My friend found great comfort knowing he had the life-ending medication, even if he wasn’t sure he would take it. He told me it freed him from anxiety, so he could spend his last days focusing on what meant most to him — being with his family and his friends.
[A]mericans who want to ensure they have a say in how they die should examine the lessons of Oregon, a new analysis suggests.
Seriously ill people in that state are more likely to have their end-of-life wishes honored — including fewer intensive-care hospitalizations and more home hospice enrollments — than those living in neighboring Washington state or the rest of the country.
In 2013, nearly two-thirds of Oregonians who died did so at home, compared with fewer than 40 percent of people elsewhere in the US, according to the report published Wednesday in the New England Journal of Medicine. Previous research had shown that more than 85 percent of Americans say they’d prefer to die at home.
“Obviously, if you’ve spent decades trying to improve your end-of-life care, it’s pretty rewarding to see that something changes,” said Dr. Susan Tolle, director of the Center for Ethics in Health Care at the Oregon Health and Science University in Portland, who co-led the study.
The review analyzed Medicare fee-for-service claims data from 2000, 2005, and 2013, and it compared end-of-life care in Oregon and Washington — a nearby state with similar demographics and attitudes toward end-of-life care — with the rest of the US, excluding those two states.
It found that in 2013, ICU use in the last 30 days of life was about 18 percent in Oregon, compared with 23 percent in Washington and 28.5 percent in the rest of the US. Nearly three-quarters of patients in Oregon hospitalized in the last month of life were discharged to home, compared with slightly fewer than two-thirds in Washington state and a little more than half — 54.2 percent — in the rest of the US.
More than 40 percent of patients in Oregon were enrolled in home hospice in 2013, compared with about 30 percent in Washington and fewer than 20 percent in the rest of the US, the analysis found.
Oregon, which enacted the nation’s first death-with-dignity law and led the way on implementing portable medical orders for treatment at the end of life, may be reaping the results of those and other efforts, said Tolle’s coauthor, Dr. Joan Teno, a professor of medicine, gerontology, and geriatrics at the University of Washington in Seattle.
“When you look at the patterns, it’s very different than the rest of the United States,” she said. “It’s even different than a borderline state.”
Pat Duty, 64, who ran a Portland floor-covering business with her husband, Jimmy, for years, said Oregon’s palliative care culture helped guide treatment decisions after his 2013 diagnosis of lung cancer and dementia. Jimmy Duty wanted limited medical interventions; he had a do-not-resuscitate order, plus a request to avoid the ICU.
“He was very clear that quality of life was his first choice,” Pat Duty recalled. “We knew we needed to discuss these things while he could make decisions for himself. We wanted to give him the dignity and grace he deserved for his final couple of years.” He died in October 2015 at age 74.
Creating such a culture is much harder than it looks, Tolle and Teno argued. Oregon has successfully integrated awareness of end-of-life care at all levels, from state government and emergency care to individual decisions made by patients and their doctors.
“If patients’ goals are not linked to actionable care plans that are supported by local health care systems and state regulations, many patients who wish to remain at home will die intubated for all the reasons the current system fails them,” they wrote.
Across the US, there’s been a push to promote ways to indicate end-of-life treatment preferences, including advance directives, which provide guidance for future care, and Physician Orders for Life-Sustaining Treatment, or POLST, portable medical orders authorizing current care. Twenty-two states now have POLST programs and others are working on or considering them, said Tolle, who co-led the creation of POLST in the early 1990s.
But the researchers warned that, while POLST efforts are important, simply filling out the forms is not enough.
“We were highlighting that there’s no simple answer,” Tolle said. “You can’t just do one thing and think that you will change the culture of end-of-life care. It is a whole lot of work.”
Dr. Scott Halpern, a medical ethics and health policy expert at the Perelman School of Medicine at the University of Pennsylvania, has been a chief critic of POLST efforts, contending that there’s little evidence that the medical orders improve quality of life near death.
The new analysis by Tolle and Teno doesn’t fill the gap, he said. But he agreed with the authors’ contention that a focus on single interventions ignores the complexity of end-of-life decisions.
“Good end-of-life care involves physicians eliciting patients’ values, hopes and fears and making treatment decisions that align,” Halpern said.
The new analysis, which was funded by a grant from the Robert Wood Johnson Foundation, underscores that families and patients outside of Oregon must be vigilant to ensure they receive the care they want, Tolle said.
“The level of care you receive near the end of life depends more on the state you live in and the systems they have in place than your actual wishes,” she said.
[C]olin Barber takes great comfort in the fact that his terminally ill wife, Valerie, was able to die peacefully in her own bed.
On Tuesday, September 1, 2015, ten days after she had been discharged from hospital, Valerie, who had bile duct cancer, took her last breath at home in their bedroom — ‘exactly as she had wanted, with her father and me on each side of her bed, gently holding her hands’, recalls Colin, 56, a business psychologist.
It was, he says, as serene a death as it could have been.
Yet it was nearly so very different. Instead of spending her last few days in peace at home, Valerie, like many patients, could have ended up being rushed to hospital and dying on an anonymous, noisy ward.
But she was one of the lucky ones: she was able to plan for her last days and ensure her wishes were adhered to, thanks to an award-winning new approach to end-of-life care known as soul midwifery.
The idea is that, just as a birth midwife helps to ease a baby’s entry into the world, a ‘soul midwife’ eases people’s dying days.
It is a cruel failure of modern medicine that while the vast majority of people — eight out of ten, according to the Office for National Statistics — want to die at home with their symptoms controlled and their loved ones around them, nearly half actually die in hospitals. Only one in five gets to die at home.
And just how ghastly dying in hospital can be was set out in a report by the British Medical Association published last March.
Based on interviews with more than 500 doctors and patients, it painted a grim picture of patients being given ‘entirely inappropriate invasive treatments’, and junior doctors often too fearful to provide adequate pain control.
Pressure on beds can mean dying patients are ‘shuffled between wards’, preventing continuity of care, while single rooms are prioritised for patients who pose an infection risk, so the dying rarely get privacy. The NHS failure to provide a dignified, peaceful death was highlighted this month by a study published in the BMJ’s Palliative and Supportive Care journal, which identified a postcode lottery in specialist palliative care.
As a result of this, patients are far more likely to be rushed to A&E at the end of their lives than to die pain-free, in peace, at home.
NURSES HAVE NO TIME TO CARE
The BMJ report followed a recent survey of almost 1,000 hospital nurses in which two thirds revealed they didn’t have enough time to care properly for dying patients.
Such is the concern that patients are being failed, that last week the National Institute for Health and Care Excellence (NICE) re-published guidance on end-of-life care first issued to doctors in 2015.
This restated four essentials: the need for doctors to draw up a care plan, provide individualised symptom control, monitor patients daily and ensure adequate hydration. Most people, says Professor Gillian Leng, deputy chief executive of NICE, receive good end-of-life care ‘but this isn’t always the case’.
End-of-life champion: Felicity Warner established soul midwifery in 2004
Good care involves asking people about their preferences as well as controlling pain, adds Sam Ahmedzai, a retired professor of palliative care who worked on the latest NICE guidance.
Yet a recent study showed that only one person in seven who could communicate their desires had those wishes documented.
This is far from a new problem. Ten years ago, a major report, the End of Life Care Strategy, featured an innovative plan to end the situation where ‘most people would prefer to die at home while only a minority manage to do so’, as then Health Secretary Alan Johnson put it.
Along with improved palliative care, the plan involved healthcare practitioners working harder to ‘identify people approaching the end of life and discuss with them their needs and preferences’.
DOCTORS CAGEY ABOUT THE TRUTH
Ten years on, although there has been a slight improvement (back then nearly six out of ten people were dying in hospital) there is still ‘a long way to go’, Claire Henry, chief executive of the National Council for Palliative Care, told Good Health this week.
So why is it still proving so difficult to get things right?
‘Some deaths happen suddenly, out of the blue, while with some patients it’s difficult to be sure whether they are dying or will recover,’ says Professor Ahmedzai.
‘That’s why we say that every patient in the last days of life should be monitored daily in case there have been changes and there is a chance of recovery.’
Research shows that, in fact, in four out of five cases GPs can predict which of their patients will die within the next 12 months. And three out of four deaths are anticipated by medical teams, according to NICE.
Professor Ahmedzai says: ‘We should be asking anyone admitted to hospital with a serious illness about their preferences for where and how they wish to die, should that look likely. But doctors often don’t because they are embarrassed or just too busy to handle that conversation. It can’t be an excuse. We must make time for the dying.’
Indeed, a major problem is that too often, dying patients simply are not told what their doctors know. Sometimes this is because doctors are unwilling to discharge patients so they can die at home because effectively ‘such a decision can be seen as an acceptance of failure’, the recent BMA report noted.
Research shows that in four out of five cases GPs can predict which of their patients will die within the next 12 months
Certainly, no one told Valerie or Colin that she was dying.
The banking relationship manager from Brentwood, Essex, had cancer diagnosed in 2013, two weeks after her 50th birthday, after noticing that the whites of her eyes were yellow.
Her GP referred her for an MRI scan, which revealed a large tumour wrapped around her bile duct.
She had surgery to remove part of her liver along with the gall bladder and bile duct, followed by three months of chemotherapy.
‘After the treatment we began to be optimistic that she was recovering,’ says Colin. But in October 2014 a scan identified nodules of cancer in the liver, too scattered to be removed surgically. In August 2015, Valerie took a sudden turn for the worse and had to be admitted to hospital.
‘We’d just come back from holiday, when she’d canoed 15 miles down the River Severn,’ recalls Colin. ‘Then one day she woke up so weak she could barely stand.’
Even so, ‘it didn’t occur to me that she was gravely ill,’ he recalls. ‘No one at the hospital mentioned the word ‘dying’.’
Valerie’s discharge from hospital three days later depended only on a physiotherapist checking that she could walk upstairs, which the couple took to mean she was on the mend.
‘But looking back on it, her doctors must have been aware that she was dying,’ says Colin. Not least because the next day, after an appointment with the cancer specialist, she was referred to hospice care.
It was not her doctors but Valerie herself who first put what was imminent into words. ‘Back at home, Valerie told me she was dying and I had to accept it,’ recalls Colin. That was when she asked him to be her soul midwife, ensuring her dying days were as she wanted them.
CARERS TO EASE THE LAST DAYS
Soul midwifery is a unique approach to end-of-life care.
In the words of Felicity Warner, the woman who founded it, ‘just as a birth midwife ensures a safe delivery into this world, the soul midwife’s role is to do the same for the dying, to make a good death possible, a dignified, peaceful and even enriching experience’.
This means ‘providing comfort, continuous support and reassurance’ — in practice, after a terminal diagnosis, this involves helping to support the patient as they make an end-of-life plan.
In the final stages the soul midwife might sit by the dying person, holding their hand, playing soothing music and burning appropriate oils. Krista Hughes, a soul midwife based in Chertsey, Surrey, works privately in people’s homes but is often called to a hospice, she says, to work with those with ‘terminal agitation’.
It is a term recognised by clinicians and often managed with sedatives, but as a soul midwife, she prefers gentle breathing, maintaining eye contact and softly repeating the person’s name.
The work of soul midwives was recognised when Felicity Warner was named 2017 End of Life Care Champion by the National Council for Palliative Care and the Royal College of Nursing. The seed for soul midwifery was planted more than 20 years ago when Felicity, now 58, was working as a journalist and interviewed several women dying of breast cancer.
The women told ‘how lonely it felt to be dying despite their medical care and their families around them’.
Not only were their doctors and nurses too busy to talk about death and dying but, surprisingly, Felicity found the women were becoming increasingly distant from friends and family who couldn’t cope with the reality and masked it with platitudes such as: ‘You’ll be feeling better soon.’
Researching how people died before the rise of modern ‘curative’ Western medicine, Felicity found a range of practices ‘that had in common the fact that they respected the act of dying as a sacred time’.
She established soul midwifery in 2004, and has since trained 600 soul midwives — many already have a health practitioner qualification — with an initial three-day course, followed by an apprenticeship lasting around a year.
Qualified soul midwives’ costs are in line with local rates for services such as counselling, though many also work as volunteers at hospices or use the qualification to help care for a terminally ill relative.
Valerie herself had attended a three-day soul midwives’ course shortly after recovering from the cancer surgery in August 2014.
‘It was something she thought she would like to do one day when she was stronger,’ recalls Colin.
So when Valerie told him she thought death might be near, he asked if she wanted him to contact the organisation to arrange for a soul midwife to visit.
Instead, she told him to read her copy of the soul midwives’ handbook so he could take on the role.
For Colin, this meant as well as ensuring Valerie’s comfort, he was her gatekeeper.
While many people want strong intravenous pain control in their last days, Valerie didn’t — ‘she wasn’t in much pain and wanted clarity of thought to the end, yet it took time and effort to stop the palliative care team administering the sedatives,’ says Colin.
‘I had to contact Valerie’s GP and get him to approve her decision, then inform the hospice nurses.’
Three days before she died, the couple celebrated their 17th wedding anniversary. ‘We wrote cards for each other and exchanged presents. The next morning, Valerie told me she had stayed for our anniversary and now she was ready to go. It was her time to die.
‘She had told me she wanted to imagine she was floating away on a boat and asked me to play soothing background music. I lit candles and used essential oils.
‘She had also warned me that the last sense to go would be her hearing, so I read prayers and spiritual affirmations.’
Soul midwifery will not be for everyone. But Colin is in no doubt that it helped Valerie to a comfortable and tranquil death.
‘Of course I longed for a last-minute reprise, a miracle recovery that would keep her with me. But I recognised that Valerie knew what her body was telling her, and did my best to concentrate on our time well spent together. I’m certain she knew that, and appreciated it.’
Effigies in Scotland from the 17th century, when death was simpler.
By Haider Javed Warraich
[E]very Thursday morning on the heart transplant service, our medical team would get a front-row seat to witness an epic battle raging under a microscope. Tiny pieces of heart tissue taken from patients with newly transplanted hearts would be broadcast onto a gigantic screen, showing static images of pink heart cells being attacked by varying amounts of blue immune cells. The more blue cells there were, the more voraciously they were chomping away the pink cells, the more evidence that the patient’s inherently xenophobic immune system was rejecting the foreign, transplanted heart.
There was so much beauty to be found in the infinitesimal push and pull between life and death those slides depicted that I would fantasize about having them framed and put up in my house. Yet the more I studied those cells, the more I realized that they might have the answers to one of the most difficult subjects of our time.
Throughout our history, particularly recently, the human race has looked far and wide to answer a complex question — what is a good death? With so many life-sustaining technologies now able to keep us alive almost indefinitely, many believe that a “natural” death is a good one. With technology now invading almost every aspect of our lives, the desire for a natural death experience mirrors trends noted in how we wish to experience birth, travel and food these days.
When we picture a natural death, we conjure a man or woman lying in bed at home surrounded by loved ones. Taking one’s last breath in one’s own bed, a sight ubiquitous in literature, was the modus operandi for death in ancient times. In the book “Western Attitudes Toward Death,” Philippe Ariès wrote that the deathbed scene was “organized by the dying person himself, who presided over it and knew its protocol” and that it was a public ceremony at which “it was essential that parents, friends and neighbors be present.” While such resplendent representations of death continue to be pervasive in both modern literature and pop culture, they are mostly fiction at best.
This vision of a natural death, however, is limited since it represents how we used to die before the development of modern resuscitative technologies and is merely a reflection of the social and scientific context of the time that death took place in. The desire for “natural” in almost every aspect of modern life represents a revolt against technology — when people say they want a natural death, they are alluding to the end’s being as technology-free as possible. Physicians too use this vocabulary, and frequently when they want to intimate to a family that more medical treatment may be futile, they encourage families to “let nature take its course.”
Yet, defining death by how medically involved it is might be shortsighted. The reason there are no life-sustaining devices in our romantic musings of death is that there just weren’t any available. Furthermore, our narratives of medical technology are derived largely from the outcomes they achieve. When death is unexpectedly averted through the use of drugs, devices or procedures, technology is considered miraculous; when death occurs regardless, its application is considered undignified. Therefore, defining a natural death is important because it forms the basis of what most people will thus consider a good death.
Perhaps we need to observe something even more elemental to understand what death is like when it is stripped bare of social context. Perhaps the answer to what can be considered a truly natural death can be found in the very cells that form the building blocks of all living things, humans included.
Though we have known for more than a century how cells are created, it is only recently that we have discovered how they die. Cells die via three main mechanisms. The ugliest and least elegant form of cell death is necrosis, in which because of either a lack of food or some other toxic injury, cells burst open, releasing their contents into the serums. Necrosis, which occurs in a transplanted heart undergoing rejection, causes a very powerful activation of the body’s immune system. Necrosis, then, is the cellular version of a “bad death.”
The second form of cell death is autophagy, in which the cell turns on itself, changing its defective or redundant components into nutrients, which can be used by other cells. This form of cell death occurs when food supply is limited but not entirely cut off, such as in heart failure.
The most sophisticated form of cell death, however, is unlike the other two types. Apoptosis, a Greek word used to describe falling leaves, is a programmed form of cell death. When a cell becomes old or disrepair sets in, it is nudged, usually by signaling molecules, to undergo a form of controlled self-demolition. Unlike in necrosis, the cell doesn’t burst, doesn’t tax the immune system, but quietly dissolves. Apoptosis is the reason our bone marrow doesn’t weigh two tons or our intestines don’t grow indefinitely.
As important as apoptosis is to death, it is essential for life. While as humans, we often consciously or unconsciously hope to achieve immortality, immortality has a very real existence in the cellular world — it’s called cancer. In fact, most cancers occur because of defects in apoptosis, and most novel cancer therapies are designed to allow cell death to occur as it normally would.
In many ways, therefore, life and death at a cellular level are much more socially conscious than how we interface with these phenomena at a human level. For cells, what is good for the organism is best for the cell. Even though cells are designed entirely to survive, an appropriate death is central to the survival of the organism, which itself has to die in a similar fashion for the sake of the society and ecosystem it inhabits.
We humans spend much of our lives denying death. Death, however, is not the enemy. If there is an enemy, it is the fear that death arouses. The fear of death often induces us to make choices that defy the biological constraints of our existence. Such choices often lead us to a fate that more closely resembles necrosis, involving the futile activation of innumerable resources eventually resulting in a cataclysmic outcome, rather than apoptosis. Furthermore, even as we hope to defy our mortality, our cells show the devastation that can occur for the organism if even one cell among billions achieves immortality.
When I asked Robert Horvitz, the Nobel Prize-winning biologist at the Massachusetts Institute of Technology who was part of the group that discovered apoptosis, what lessons we could learn from cell death, his answer demonstrated exactly why we have failed to understand death in the context of our lives: “Only once before has someone approached me to discuss the existential questions that might relate what is known about cell death to human existence.”
The question for us, then, is: What is the human equivalent of apoptosis in the context of our society? One way to approach that question is to look at what the human equivalent of necrosis is. To me, if a human being is in the hospital with intensive, life-sustaining therapies such as artificial respiration, nutrition or dialysis sustaining them with little hope of recovering reasonable brain function, such a state could be considered necrosis. Almost any other alternative, whether one dies in the hospital having rescinded resuscitation or intubation (DNR/DNI), at home with hospice services or with the aid of a physician’s prescription, has much more in common with apoptosis.
We have striven endlessly to answer some of our most crucial questions, yet somehow we haven’t tried to find them in the basic machinery of our biology. Apoptosis represents a pure vision of death as it occurs in nature, and that vision is something we might aspire to in our own deaths: A cell never dies in isolation, but in clear view of its peers; it rarely dies of its own volition; a greater force that is in touch with the larger organism understands when a cell is more likely to harm itself and those around it by carrying on. Apoptosis represents the ultimate paradox — for the organism to survive, the cells must die, and they must die well. “There are many disorders in which there is too little apoptotic death,” Dr. Horvitz said, “and in those cases it is activating apoptosis that could increase longevity.”
And finally, a cell also understands better than we humans do the consequences of outlasting one’s welcome. For though humanity aspires to achieve immortality, our cells teach us that a life without death is the most unnatural fate of all.
Medical students do not learn how to talk about death. Junior doctors are forced to learn on the job – and that isn’t fair on patients or families
‘Death cafes aren’t a solution to lack of teaching, but all medical students should attend one.’
By Isabella Laws
[I]t is taboo in British culture to talk about death. We say someone has “passed away”, “kicked the bucket” or “left us” – anything to avoid even using the word. This has consequences. While 70% of people wish to die at home, half of us will actually die in hospital. Our reluctance to talk about death and make our wishes known is part of the reason for this.
So I didn’t expect to enjoy visiting a death cafe. As soon as I arrived, I knew I had made the right decision, however. The room hummed with a low level of chatter, and I felt prepared to practise talking about death and dying.
On that particular morning there were six of us in the cafe: two academic psychologists, a woman who had lost her husband in her early 30s, a grief counsellor and a man who had had a near-death experience. There was also a group leader, although the conversation was completely unstructured save for initial introductions – and the proviso that everything we discussed must be about death.
Death cafes were founded in the UK in 2011, inspired by a Swiss model, and the aim is simple: to increase awareness and openness about death with a view to helping people make the most of their (finite) lives. There are now more than 4,000 cafes held around the UK, Europe and north America.
After the death cafe, I couldn’t believe that I had spent two hours talking exclusively about dying. It was satisfying to talk to others who were honest about their experiences and fears. Nearly everyone regretted not speaking more frankly about it with their parents before they died. They also worried about raising the topic with their children: who should raise it? When is the right time? What if they shut the conversation down? One woman asked the group what kind of legacy we each wanted to leave behind. She worried that she had not been close to her family and they would not remember her in the way she wanted when she dies.
I was by far the youngest person there. This is unsurprising – people in their 20s don’t often think about death. I went because there is a fundamental lack of teaching at medical school to prepare you for the fact that this is something I will have to deal with every day as a doctor. In six years of study, I will have had just one small group session on “breaking bad news”. Yet as soon as I am qualified, I will be expected to talk about death and dying to patients and their loved ones on a daily basis. Last year, I saw a doctor only months out of medical school comfort a woman after her husband’s death. The same would be expected of me in just over a year’s time – and I was not ready.
In 2000, an average of 20 hours (pdf) were dedicated to palliative care teaching at medical school. I certainly haven’t experienced any increase on that figure, 17 years later.
I have witnessed good practice during my training, but there have also been times when I wished I wasn’t in the room. Last year, while sitting in on a neurology clinic, I watched as a patient was told they had motor neurone disease. Their face went blank and pale with shock, but the doctor seemed oblivious and launched into a monologue about the patient’s treatment options and prognosis. I sat in the corner of the room, powerless to intervene. Without teaching doctors effective communication skills as students, how can we be expected to fare any better?
A survey of junior doctors by the Royal College of Physicians of Edinburgh in 2013 found that only half felt prepared for communicating with dying patients and their families. This figure rose to 70% for their clinical trainers.
This lack of teaching lets down not just students, but patients too. A lack of guidance means junior doctors are forced to learn on the job. Undoubtedly, they will improve in time. The patients and families who experience unsatisfactory or even upsetting communication along the way are simply collateral damage.
Death cafes aren’t a solution to lack of teaching, but I think they make a good start. All medical students should attend one. It’s something all of us, without exception, will be affected by. Only through practising these skills can we hope to be effective and sensitive communicators when the time comes for us to break bad news.
