Tag: Conscious Dying

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Soul midwifery – ‘Midwives’ of mercy

The new breed of inspirational carers helping to ensure people’s dying days are spent in the comfort of their own homes

By Jane Feinmann

[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.’

Complete Article HERE!

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What Our Cells Teach Us About a ‘Natural’ Death

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.

Complete Article HERE!

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Hospital volunteers unlock deep mysteries with dying patients

David Wynn, left, Edie Bennett, right, and Carolyn Lyon, center, are volunteers in the St. Joseph Hospital NODA program in Orange. No One Dies Alone is to provide a reassuring presence to patients who would otherwise be alone.

by DAVID WHITING

[T]here is life and death and the in-between.

It is the in-between where hospital volunteers such as Edie Bennett and David Wynn make sure that no one dies alone.

Over nearly a decade of volunteering at St. Joseph Hospital of Orange, Bennett and Wynn have comforted people going gently into the night, endured sepsis many would run away from, even witnessed people crossing death’s door and suddenly reviving.

But perhaps there is nothing Bennett and Wynn say that is more comforting than hearing when someone is unresponsive humans connect on far deeper levels than you might expect.

It has to do with love. But sometimes it also has to do with jazz.

MOVEMENT OF LOVE

Family and friends gathering with someone near death is as old as humanity. But in the modern world, there is a raft of reasons dying patients face death alone.

Some have families too far away to arrive in time, some are homeless and without support, others are estranged from loved ones, some simply outlive everyone they know.

The No One Dies Alone movement traces its roots to a rainy Oregon night in 1986.

Sandra Clarke, a nurse at Sacred Heart Medical Center in Eugene, tended to an elderly dying man who asked, “Would you stay with me?’

Clarke was especially busy with six patients, according to reports, and promised she would soon be back. But by the time she returned, the man had passed on.

For years, the incident haunted Clarke. Eventually, she discussed with staff her idea of volunteers staying with dying patients. PeaceHealth, the corporate organization of Sacred Heart Medical Center, approved her vision and in 2001 No One Dies Alone was born.

Today, an estimated 200 hospitals are involved.

Wynn first thought about dying alone when he and his family happened to be in Las Vegas and a family member died while they were there. Later, he heard about No One Dies Alone through a hospital newsletter after being treated for a condition that nearly killed him. He recalled dark, sometimes scary nights when staff held his hand and comforted his worries away. “It was like I got hit on the head with a board.

“I don’t want to sound like ‘St. Dave,’ but I wanted to do something that made a difference.”

Busy with family, camping, skiing and a demanding job as an AT&T senior project manager, Wynn offered to volunteer. Soon, he was coaxed into coordinating the program.

That was nearly a decade ago.

DEEP CONNECTIONS

St. Joe’s, as the hospital is affectionately known, averages one dying alone incident a month. That may not sound like much, but keep in mind that death is unpredictable. Some people pass within a few hours, others linger for weeks — and some walk away.

Wynn recalls a woman dying one New Year’s Eve. On his way home from a ski trip with his wife, he agreed to answer the call thinking he would be home from the hospital before midnight.

But midnight stretched to 1 a.m., then 2 a.m., then 3 a.m. Dozing in a chair, Wynn woke to daylight and the woman sat bolt upright in bed asking, “Who are you?”

Wynn stammered he was simply there to keep her company.

Soon, the woman returned to her nursing home.

When a call goes out, an army of some 45 volunteers split into four-hour, round-the-clock shifts.

Wynn recalls his first patient, a woman in isolation dying of cancer. When he opened her door, the odor nearly knocked him over. He gathered himself, sat down, took a glove off and touched the woman’s arm to assure her that she was not alone.

“It’s not always pleasant. Sitting there for hours with a gown and mask on can be difficult,” Wynn, a 61-year-old Anaheim Hills resident, allows, “but every human being deserves to die with dignity.

“I think touch is very important.”

As Wynn talks, I think of my father holding my mother’s hand and caressing her arm just before Thanksgiving as she lay in a coma. As her heartbeat slowed, I too held her hand and gently kissed her forehead.

But I wondered whether we do these things to sooth our souls or for the souls of others.

Wynn is convinced communication — both sound and kinetic — goes back and forth regardless of the patient’s responsiveness.

“When I was non-responsive,” he says of his time as a patient, “I could still think, I was still aware.”

Volunteers talk, watch TV, listen to music with patients. “Each case,” Wynn explains, “takes on a life of their own. There’s a connection.”

Wynn learned one of his patients was a musician so Wynn played classical music. But the patient grew restless so Wynn turned off the music. Later, he learned the man was a jazz musician and Wynn played something off a 1959 Miles Davis album called “Kind of Blue.”

The patient’s lips crinkled into a slight smile.

‘SACRED ENCOUNTERS’

When Bennett learned her father was in the hospital in Arizona, the retired lobbyist drove eight straight hours. But she just missed being there when dad was still alive.

The event prompted the 68-year-old Orange resident to volunteer. “You’re sharing the last stage of life’s journey,” Bennett offers. “For me there’s no more sacred an encounter.”

Both Bennett and Wynn remember every patient as if it were yesterday. One was a 26-year-old woman with a long-term disease Bennett had met at St. Joe’s the year before. Back then, the woman had a tattered stuffed animal. Bennett brought a playmate, a furry toy.

“She was sipping from a straw,” Bennett recalls, “lime Jell-O. I stroked her hair. She could have been my daughter.”

Bennett looked at the young woman and promised, “You will always be my angel.”

“Thank you,” the young woman said before slipping away.

“I still think of her,” Bennett allows, “and that was almost two years ago.”

Then there was the time when Bennett was with a dying woman gasping for air. Her breathing slowed to six breaths a minute. Soon, it was so quiet it appeared she was about to take her final breath.

Suddenly, the patient muttered something. Bennett couldn’t make it out. Another sound, “water.”

Within an hour, the patient sang, “Water, water.” Then she ate chocolate pudding. Soon, she was discharged.

“It’s rare,” Bennett says, “but it does happen.”

The mystery of the in-between.

Complete Article HERE!

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Nursing my dying mother made me determined that everyone should have a ‘good’ death

By Adrienne Betteley

[W]hen my mum Joan died of oesophageal cancer in 2014, she was in the place she wanted to spend her last days – the spare bedroom at home – with me and my dad, Cliff, by her side.

I’d spent the last week in a camp bed next to Mum, wiping her lips and mopping her forehead as we shared memories.

On the night she died, she put her arm around me and said “Adrienne, I have to thank you for being the most wonderful daughter.” Afterwards, our district nurse made my dad a whisky and me a cup of tea as we said our final goodbyes.

Not without serious difficulty

Mum had a ‘good death’, but not without serious difficulties at times. I can’t help thinking it was my background as a district nurse that allowed her to die at home with her family. My experience meant I was listened to, and I pushed for her to get what she needed, such as acupuncture at the local hospice to relieve her crippling pain from arthritis. I knew what to expect and what conversations to have. We had early discussions about how she wanted to die (at home, not in hospital) and where (not next to Dad in their bed), which we call Advance Care Planning in the medical profession. At Macmillan, we believe that more needs to be done to ensure people are planning for their deaths, so their wishes – such as where they die – can be met.

Sadly, a death like my mum’s is denied to so many in this country. And I believe it would have been impossible for her too, had she not happened to have a nurse for a daughter. I had to fight to get her the care she desperately needed. Services are depleted, especially out of hours. You can’t choose when advanced cancer will cause you pain, but getting pain-relief at night or on weekends can be impossible. In her final days, there was no availability for a night sitter. Thankfully, I could be by her bedside, but had I not been, I’m convinced she would have died in hospital against her wishes.

Findings published in the British Medical Journal last week help explain why some people aren’t getting enough support when they are dying. Care for dying people varies hugely across different regions, both in how much money services are allocated and what care they offer. Figures suggested that, in most parts of the country, there are no specialist pain control teams, and, where they are in place, most operate only in normal working hours with no cover overnight. Until you’ve had a loved one in pain, with no way of providing them relief, it’s hard to appreciate the urgency of this situation.

Having a choice

Pain relief is the very least we should expect at the end of our lives. But it’s also important that, where possible, patients can die in a place of their choosing. We know that most people with advanced cancer would prefer to die at home, but not many of them actually do. Without round-the-clock community nursing, it’s hard to see how this will improve.

My days as a district nurse taught me that getting things right for people at the end of their life takes time. Decisions made about treatment affect how that person will spend their last months, weeks, hours, in this world. But time is something our overstretched workforce doesn’t have. Last month came another heart-breaking revelation – that over two thirds of nurses ‘don’t have time’ to care for dying patients. Is this really what we’ve come to? Something has to change.

Painless death must be priority

I know what a good death looks like, and that it is achievable. But to give everyone a chance to die without pain, and in the place they want to, care for dying people needs to be a priority across the country. As the NHS and local councils set out their plans to transform healthcare, it’s vitally important that they take into account how they will care for people at the end of their lives. At Macmillan, we’ll be monitoring these plans closely to make sure they do.

Those last few weeks with my mum were exhausting, but they were special and irreplaceable. Helping her in her final days with the people she loved, in the house she knew, was the most meaningful thing I’ve ever done. Caring how people die isn’t just about death, but about the value we place on life.

Complete Article HERE!

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I went to a death cafe to learn how to talk to dying patients

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.

 Complete Article HERE!

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The Good Death: How Do Christians Learn to Die?

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[B]ut it also struck me that we tend to do Lent in such a way that the emphasis lands on the second half of that sobering statement, not the first. Maybe it’s an evangelical, Pietist, or Baptist thing: we’d rather know what we can do, not linger on who we are. For whatever reason, our Ash Wednesday service was full of the language of repentance, and had substantially less to say about the other pervasive theme of Lent: death.

It probably feels different if you impose ashes on the very young, the very ill, or the very old, but it’s hard to think too concretely about death when you’re face-to-face with someone in the prime of life. After the service, I had to explain to one student that “dust you are and to dust you shall return” is simply a more poetic inversion of the preceding line in the Book of Genesis:

By the sweat of your face
    you shall eat bread
until you return to the ground,
    for out of it you were taken;
you are dust,
    and to dust you shall return. (3:19)

(“Oh,” she replied, “okay. Thanks.”)

To be sure, the smudged cross on our foreheads evokes hope; it’s a partial symbol, an incomplete thought resolved by Resurrection. But even for those who live in that hope, death is inescapable.

Worse yet, dying is inescapable. We will be changed “in the twinkling of an eye” (1 Cor 15:52), but for many of us, death will not come so suddenly, or mercifully. It will be preceded by longer periods of physical pain and emotional distress, by the contemplation of severed relationships and work left unfinished, and perhaps by spiritual turmoil or emptiness. And then there’s the lingering impact on family, friends, colleagues, caregivers, medical professionals…

We can celebrate with Paul that our “being given up to death for Jesus’ sake” makes the life of Jesus “visible in our mortal flesh” (2 Cor 4:11). But mortality can be hard to face.

(If I sound a different tone than usual in this post, it’s because I can’t write about this topic without thinking of loved ones: two friends who died not long ago, one after a months-long battle with cancer and the other after spending several days in an intensive care ward, incapacitated by a stroke; and my grandfather, whose body is giving out at a rate that makes it unlikely that he’ll see his ninety-fifth birthday.)

Fortunately,Christian tradition is full of wise reflection on what it means to die — and even, how do it well.

In fact, I’m treading familiar ground for longtime readers of this blog.  In May 2013, David and then-Bench-er (now university provost) Miles Mullin took turns reflecting on Christian understandings of “the good death.” Miles shared resources from authors ranging from Gregory the Great and John Donne to contemporary journalist Rob Moll. David reflected on a class visit to a monastery inhabited by casket-building Trappist monks.

But like him, I’d particularly recommend the revelatory first chapter of This Republic of Suffering, by Civil War historian and Harvard president Drew Gilpin Faust. (Or look for the associated episode of PBS’ American Experience series.) Of a conflict that took three-quarters of a million lives (recently revised upwards from the bad-enough-as-it-is number of 618,222), Faust observes that

Civil War soldiers had many opportunities to die and a variety of ways in which to do so…. As men became soldiers and contemplated battle, they confronted the very real possibility of death. They needed to be both willing and ready to die, and as they departed for war, they turned to the resources of their culture, codes of masculinity, patriotism, and religion to prepare themselves for what lay ahead. This was the initial work of death.

(One more example: a year ago John shared the story of the Gaillard family, Confederates for whom “death and Christian faith were inseparable if sometimes awkward companions.”)

Like David, “I don’t want to over-romanticize premodern death,” nor “trade [modern death] for a nineteenth-century ‘good death.’” But Faust is no doubt correct that “Civil War soldiers were, in fact, better prepared to die than to kill, for they lived in a culture that offered many lessons in how life should end.” For example, Americans on both sides of the conflict read The Rule and Exercise of Holy Dying (1651), by the Anglican divine Jeremy Taylor: “His revision of the originally Catholic ars moriendi [art of dying] proved not just a literary achievement but an intellectual triumph that firmly established the genre within Protestantism.”

For Taylor, dying well was a lifelong activity. “In the church of Rome,” he scoffed, “they reckon otherwise concerning sick and dying Christians than I have done. For they make profession, that from death to life, from sin to grace, a man may very certainly be changed, though the operation begin not before his last hour….” Instead, Taylor spends nearly sixty pages advising a “General Preparation towards a holy and blessed death” before actually getting to dying itself. And this was all a sequel to his Rules and Exercises of Holy Living.

Today there is little about secular or Christian culture in this country that encourages reflection on anything like the ars moriendi. The art of dying couldn’t seem more foreign. “Once an intimate family affair,” Miles observed, “death and dying are now outsourced in America.” And Faust admitted that her readers might feel that Civil War soldiers “often seem to have been trying too hard as they sought to present evidence of a dead comrade’s ease at dying or readiness for salvation.”

Yet these soldiers’ “Victorian and Christian culture offered them the resources with which to salve [their] deep spiritual wounds.” And that’s true of Christians living through earlier chapters in the story of the church. So instead of giving up chocolate or Facebook this Lent, perhaps we postmoderns should devote ourselves to a different discipline, and spend time studying a couple of these older reflections on how Christians face death and dying.

Complete Article HERE!

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The euthanasia debate is polarised, yet shared concerns unite all sides

People with opposing views on legalising the right to die agree palliative care is inadequate. We need to build on this common ground

Research funded by the Joseph Rowntree Foundation found that people were united in compassion for those with terminal illnesses.

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[B]rigit Forsyth, the actor best know as Thelma in Whatever Happened to the Likely Lads? is currently playing a terminally ill musician on stage. Her character in Killing Time says she’s a “prime candidate for a one-way trip to Switzerland”. Forsyth has disclosed that her GP grandfather helped dying patients end their lives and that she is in favour of euthanasia. Her comments are the latest in a long line of opinions on legalised assisted dying reported in the press, which has a habit of oversimplifying the complex arguments for and against. And this seems to be damaging our ability to hold meaningful public debate on the subject.

With this in mind, a study funded by the Joseph Rowntree Foundation sought the views of people with strongly opposed opinions on the matter. Participants in both groups included people with palliative care backgrounds, older and disabled people, those from organisations concerned with care and support and individuals from academic, social work and policy backgrounds.

What emerged is a surprising amount of common ground. People with apparently polarised views on legalising the right to die often shared areas of interest and concern. It is these areas that should form the basis for further public discussion, argues the report, Assisted Dying: Developing the Debate, which is published on Wednesday by the Shaping Our Lives network of user-led groups, service users and disabled people.

Shared concerns included clear agreement that palliative care for terminally ill people is inadequate. Whether for or against assisted dying, participants showed a willingness to discuss quality of life for terminally ill people, the value placed on good-quality care, and how to invest in and provide access to this care in the face of economic inequality.

Participants recognised that the debate on legalising assisted dying was taking place in an unequal society: we often place lower social value on older, sick, and disabled people. The research identified a willingness to discuss prevailing societal values, including the concept of “being a burden” on society; the value society placed on social care and support work; and our social attitudes towards death and dying. “How should assisted dying be funded?”, “Where should it be performed?”, and “What methods and means of self-administering a fatal dose should be used?”, were just some of the common questions raised.

Despite disagreement about the extent to which detailed processes and safeguards should be included in assisted dying legislation, participants from across the spectrum of opinion generally agreed that the “how” questions were not being discussed in enough depth.

Areas of shared understanding also emerged when respondents discussed ethical and existential ideas around death and dying, including the psychological aspects of pain and suffering, both for individuals and their loved ones. “All participants had a wish to find the best way forward with compassion for people who are terminally ill, regardless of being for or against legalising assisted dying,” the report concludes.

The study shows that the issues are far more complex than much of the public debate has so far allowed. Death and dying is a core issue for human beings, and public debate must reflect this. It is time to embrace the personal, social, policy and ethical issues that participants have highlighted.

Back in the theatre, Forsyth’s dying musician is visited by a young carer (Zoe Mills) who feels it is her duty to help put older people out of their misery. According to the reviews, she comes to realise that life and death is more nuanced.

Complete Article HERE!