End-Of-Life Care Is A New Beginning For Some Homeless Patients

by Mariana Dale

[I]nside a medical care facility in central Phoenix there’s a small chapel with frosted glass windows.

On the wall there’s more than a dozen framed photos of smiling faces. These are the people who have passed on here; many were in the final stages of their life.

James Martz was diagnosed with lung cancer in 2017 and hit rock bottom before getting help at Circle the City.

“They all brought their gifts to this world and they ended up in a place where they had no one,” said Lin Sue Cooney, Hospice of the Valley Community Engagement director. “It’s our collective responsibility as a community to make sure that they have dignity and comfort at the end of life.”

The medical care center Circle the City has 50 beds to care for the homeless, and several are reserved for hospice patients. Medicaid can pay for end-of life-care and even those who can’t pay anything are still treated.

The number of homeless older Americans is rising.

The state’s largest emergency shelter, Central Arizona Shelter Services, known as CASS, saw 423 clients over age 62 last year.

CEO Lisa Glow said the oldest, 89, came into the shelter pushing a walker. Her son was taking her pension and she was homeless.

“There’s vulnerability to fraud, vulnerability to disease, vulnerability to abuse and being taken advantage of,” Glow said. She said there aren’t enough resources at CASS or in the Valley to handle the predicted influx of older people who will end up on the streets and in poor health.

“Being an emergency shelter, people have to take care of their basic daily living needs,” Glow said.

Jesus Tovar, 67, was discharged from the hospital to Circle the City.

Me sufre mucho en la calle, mucho frío, llueve, a veces no tienes que comer.” Tovar said he suffered a lot in the streets; it was cold, it rained and sometimes he didn’t have anything to eat. Tovar is diabetic and has problems with his lungs and heart.

His voice became thick with emotion when he talked about life on the street.

Aquí tienes cama. Te dan tus medicinas.” Here there’s a bed, they give you your medicine. It’s like another family, Tovar said. “Aquí tiene como otro familia.

Tovar is also working toward connecting with his own family through a social worker at the center.

Jesus Tovar said he became disconnected with his family when he lived on the streets. He hopes to mend their relationship with the help of a social worker at Circle the City.

“With that aging comes an inherent need for better end of life care and we have to be able to rise to that challenge,” said Brandon Clark, Circle the City CEO.

“When people come here on hospice they frequently have no one,” Clark said. “It’s rare they have no one when they leave this world.”

‘Pride almost killed me’

Almost everything James Martz is wearing from his UnderArmor sweatshirt to his tennis shoes is new, at least to him.

A chunky silver ring on his right hand is one of the only material possessions Martz still has from his “old life.” It represented his time as a member of the North American Hunting Club.

“Pride almost killed me.” Martz said it’s what kept him from asking for help earlier.

Martz can list the events that lead to rock bottom — drug use, an eviction, a pneumonia diagnosis that revealed lung cancer, chemotherapy.

“It would make me throw up, the other thing,” Martz said grimacing. “You didn’t want to eat. You wanted to sleep all the time.”

In September, Martz said his oncologist gave him six to nine months to live. 

Around that time he was sleeping in his broken down 1993 Oldsmobile Cutlass in a strip mall parking lot in Mesa. Eventually police kicked him out after the center’s owner complained.

“I just grabbed my meds and anything essential and just walked off the property,” Martz said. He walked until the skin on his feet bubbled into blisters. A hospital covered the wounds with salve and discharged him.

“I got out of the hospital and I tried to get out of the wheelchair they wheeled me in and I couldn’t even stand up,” Martz said. Then he remembered he had a number for Hospice of the Valley. 

“He was very sick, sad, uncertain of the future, some anxiety and I think he just didn’t know what was going to happen,” said Kim Despres, a program director at Circle the City where Martz ended up.

RELATED: KJZZ’s Special Series, Homeless In Plain Sight

Homeless people can recover there when they’re not sick enough to stay in a hospital, but not well enough to be on the streets.

It’s also one of the only places that provides end-of-life care for people who have nowhere else to go. James Martz had decided he was done with chemotherapy and entered hospice there.

Hospice of the Valley took care of 18,500 patients and family members last year. It’s just one of dozens of hospice organizations in the Valley.

Complete Article HERE!

Americans are pack rats. Swedes have the solution: ‘Death cleaning.’

by Jura Koncius

[I]f your family doesn’t want your stuff when you’re alive, they sure won’t want it when you’re dead.

That’s the blunt assessment of yet another self-help author from abroad who is trying to get Americans, who have an addiction to collecting and storage units, to clean up their acts.

The latest volley in the decluttering business comes from Stockholm, where 80-ish artist Margareta Magnusson has just published a slim yet sage volume, “The Gentle Art of Swedish Death Cleaning.” The book will be published in the United States in January.

While Japanese item-control diva Marie Kondo gave us strict instructions to keep only things that spark joy, Magnusson’s book is straightforward and unsentimental (with a bit of humor). The main message from this mother of five is: Take responsibility for your items and don’t leave them as a burden for family and friends. It’s not fair. Magnusson says you can keep things that evoke good memories; there are no hard-and-fast rules such as folding your remaining T-shirts to stand upright in your drawers, as dictated by the KonMari method.

The concept of decluttering before you die, a process called “dostadning,” is part of Swedish culture. (It comes from the Swedish words for death and cleaning.) Karin Olofsdotter, 51, the Swedish ambassador to the United States, says her mother and father, who are in their 80s, are in the midst of it back home.

“My parents and their friends are death cleaning, and we all kind of joke about it,” Olofsdotter says. “It’s almost like a biological thing to do.” Olofsdotter says part of Swedish culture is living independently and never being a burden to anyone. How you keep your home is a statement of that.

Magnusson, who has moved 17 times, says women often end up doing the death cleaning. After her husband died, she had to declutter their house; it took her almost a year before she could downsize to a two-room apartment. She says that although it felt overwhelming, she is glad she did it herself, as her husband would have wanted to keep everything and her kids would have disagreed about what to keep and what to toss. This way, she made her own decisions. Now she continues to do it on a regular basis.

Magnusson suggests that age 65 is a good time to start death cleaning, but the process is freeing at any age.

A few of her tips: Don’t start with your photos, as you’ll get bogged down in your memories and never accomplish anything. Make sure you keep a book of passwords for your heirs. Give away nice things you don’t want as gifts, such as china or table linens or books, as opposed to buying new items. Keep a separate box of things that matter only to you, and label it to be tossed upon your death. It’s okay to keep a beloved stuffed animal or two.

Magnusson and one of her daughters filmed a video in which she talks about why she decluttered and how it’s not a sad process, but more of a relief. Her daughter asks whether her mom would help her begin death cleaning. They go to a storage locker overflowing with luggage and clothes and blankets topped by a garden gnome.

“Oh, my God. What are you going to do with all this crap?” her mother says in perfect English, taking a look around. They discuss how long it’s going to take.

“You are never ready with your death cleaning because you don’t know when you are going to die,” Magnusson says. “So it goes on and on.”

When you are dead, then it stops, they agree.

“Finally,” Magnusson says.

Complete Article HERE!

Better Angels

Death with dignity advocate Bruce Wilson, facing his end, wants you to know he’s grateful

Pulmonologist Glenn Ragalie (right) says goodbye to former colleague and cardiologist turned hospice physician Bruce Wilson (foreground) after visiting Tuesday, January 16, 2018 at Froedtert Hospital in Wauwatosa, Wis. Wilson has end stage pancreatic cancer.

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[N]ot long after he wrote that, Bruce became a hospice care physician. He has dedicated himself to nudging, sometimes dragging, his medical colleagues in particular and the public in general to stop, take a deep breath and talk about how we would like to handle our inevitable demise.

Last February, Bruce was diagnosed with pancreatic cancer.

In the months that followed, the disease proved to be indifferent to chemotherapy and beyond surgical intervention.

Bruce, 66, is home with Barb, his wife of almost 34 years. If all goes as hoped, that is where he will die.

“People say to me, ‘This must be so surreal,’” he said during a recent week of in-patient treatment at Froedtert Hospital.

(Bruce is not opposed to end-of-life medical intervention. Doctors, he says, have a very important part to play in improving the quality of their patients’ final days. What he is opposed to are ill-informed medical decisions based on fear and desperation that too often merely extend a dying person’s misery.)

“And you know, it is sort of odd. I’m sitting in the front row watching myself. It’s afforded me the opportunity to be right square in the middle of it and say, ‘OK. How am I going to react to this reality?’ ”

Bruce, in these final days, has plenty to say about death and dying, but here’s the main thing he wants people to know:

“I am so grateful.”

He’s grateful that he has had time to love, to admire, to grieve, to celebrate, to forgive and to be forgiven by the people he cares about most.

“You can’t have that when you have the symptoms of a very aggressive cancer, and you are being eaten alive from the inside and you’re in horrible pain all the time and you develop delirium.

“That opportunity is lost.”

To make the most of the opportunity you are given, Bruce said, you need to prepare.

An advance directive needs to be in place so that your doctors and family don’t have to guess at what you wish will happen as you die.

“So you can mourn together, share the loss together, but also be grateful together for your presence in each other’s life.”

Barb, who was sitting near Bruce’s hospital bed, said, “The thing you need to understand to really see what this gratitude thing does is — there is a kind of ripple effect.”

Sharing gratitude, Barb said, “is such a gift.”

“I don’t have to mourn that he was so miserable, he was so afraid, he didn’t get what he needed, he was so unhappy, he was suffering or in pain.”

It’s the difference between grief and regret.

But here is the hard part, Barb said. Here is what you must do before the time comes, as surely it will, that you can no longer deny that you will die.

You have to live.

“You die how you live,” Barb said.

“And if you have purpose and gratitude and all those things, then that is how you are going to die.”

Complete Article HERE!

Let’s talk about death

Dr Munguntsetseg and Australian Volunteer Diane Anthony talk with family members of patients at Mongolia’s National Cancer Centre. Diane helped set up training sessions and support groups for carers of patients in the palliative care ward. Mongolia 2013.

[D]eath and dying surrounds us, yet many of us see it as an uncomfortable taboo subject. As part of a series of articles on encouraging an open dialogue around death and dying, we asked various healthcare professionals, academics, and members of the public who have experienced palliative care the following question:

How important is it that we as a society are open to discussing death and dying?

‘It is never too soon in life to talk about death and dying: I have seen too many people regret the fact that they did not know the final wishes of a loved one – and I have also experienced the joy of attending a funeral that was a true reflection of a life lived… As a former Hospice Social Worker, but primarily as a human being, my advice would be:

For everyone’s sake – let the conversation begin!’

– Sue Taplin is a qualified social worker with a practice background in palliative care. She has held academic posts at the University of Nottingham, University of Suffolk and currently at Anglia Ruskin University, and has a Doctorate in Social Work from the University of East Anglia.

‘My mixed-race background has given me different perspectives when discussing death and dying. My Asian grandmother, totally dependent on her two sons, regularly has frank discussions about her end of life. I think these help not only her, but also close family in preparing themselves for the inevitable. Conversely, my English grandparents who live alone do not have the same level of openness about the topic with relatives, and consequently the future holds great fear of the unknown. To me, these personal examples highlight the importance of having these conversations.’

– Sian Warner is a Third-Year Medical Student at the University of Birmingham.

‘Death is certain. What is uncertain is when. So what do we do? Talking about death will help make the final stage of life as good as possible, instead of pretending it will never happen. So, advance care planning is a big part of the solution. All of us, including health and social care professionals, need to create opportunities for people to talk about the things that matters most to them, what they do and don’t want to happen. This will enable more people to live well until they die, allowing a good life to culminate in a good death.’

– Keri Thomas is the Founder and National Clinical Lead for the Gold Standards Framework Centre in End of Life Care in Shrewsbury. She is also the co-author of Advance Care Planning in End of Life Care, Second Edition (OUP, 2017).

‘I was given the news two years ago that I could not be cured of my cancer. I feel it is important to be able to openly discuss my fears and thoughts on dying. I feel that society as a whole has a taboo about the question of dying, and most people will side-step the issue when talking to me. Death is something we all face – rich and poor alike – and I think we can all do more to make the discussion more open and informative. I have found that Palliative Care is a refreshing format to further the discussion.’

– John Joyce is from Mayo, Ireland and has been fighting cancer for five years. John is a member of Voices 4 Care.

‘Palliative care should be available to anyone who needs it regardless of diagnosis or location of care. Talking about death and dying can be perceived as contentious with some suggesting that it can be distressing for people to think about their own mortality. However, recent research indicates that people appreciate the opportunity to talk about their preference for care at the end-of-life. Advance care planning provides people with the opportunity to think and talk about their wishes and provides healthcare professionals with the chance to ensure that these wishes, where possible, are met at the end-of-life.’

– Dr Julie Ling is the CEO of the European Association of Palliative Care.

‘Due to our ageing population, we can expect an increasing number of people dying in the next 25 years. Over half of these deaths will be people aged 85 years or over. It is important and timely for us to have a public debate on how we best prepare for this, to understand what aspects of care are important to people nearing the end of life, and where we should be directing investment to meet these growing needs.’

– The Palliative Care Research Society is a society dedicated to promoting research into all aspects of palliative care and to facilitating its dissemination.

‘It shouldn’t be, but it is the complete conversation stopper: “Have you thought how you would like to die?”

Death, dying, and passing on surrounds us on a daily basis in our neighbourhoods, on the television, and on social media, yet we never personalise it, never look at our own bodies and imagine them injured, ageing, or terminally ill. We never try to visualise our own non-existence and its effect on others – we shiver, shrug, and continue with our finite lives. “All living things have a designated lifespan – but not me!”’

– Elizabeth Fuller is a long-term volunteer at the Specialist Palliative Care Ward at Our Lady’s Hospice, Harold’s Cross, Dublin.

Just as life and birth is a common part of society, so too is death and dying. The celebration of life and birth promotes it as a shared experience. The birth process is very patient and family-centered with attention to social, cultural, and spiritual context. However, death and dying is not celebrated in this way and results in isolation, avoidance, and surprise. The result is many deaths are medicalized and are not guided by patient preference. Society needs to make death and dying more patient-centered.

– Constance Dahlin is the Director of Professional Practice for the Hospice and Palliative Nurses Association in Pittsburgh, Pennsylvania and a Palliative Nurse Practitioner at North Shore Medical Center in Salem, Massachusetts. She is a co-editor of Clinical Pocket Guide to Advanced Practice Palliative Nursing (OUP, 2017).

Complete Article HERE!

Researchers Use A.I. To Improve Quality Of End-Of-Life Care

By Justin Diaz

[R]esearchers at Stanford University are using A.I. technology to improve the quality of end-of-life care for patients who may have been diagnosed as terminally ill and have been given a prognosis of having only a certain period of time to live. Essentially, the research is using deep learning to more accurately predict when a person with a terminally ill disease is going to die. As the research states, physicians can over estimate the amount of time a patient may have, which can lead to issues with the end-of-life care and the wishes of the patient. More than just using deep learning technology the researchers are also gathering information from Electronic Health Record data to help narrow down a more precise time frame for death to give a better prognosis.

The reason for this research is tied to information showing that 80 percent of patients in the U.S. who have been given a prognosis of dying soon would want to spend the time they have left at home, which would require palliative care. The research study also points out that only around 20 percent of those who wish to receive palliative care actually get it, and that a big part of that can be due to physicians overlooking certain details that could lead to allowing such care within the home as opposed to the hospital.

The research was said to be conducted with the gathered data coming from two million patient records and that using that data has allowed the researchers to create a model that is about 90 percent accurate in predicting when a patient is going to die. Reaching a mortality prediction apparently starts by ignoring the disease type, the stage of the disease, and the severity of the admission, which the deep learning model then analyzes to ultimately come to the prediction. According to the researchers at Stanford who were part of this project, some pretty powerful computing hardware was needed as the model tests were run using a computer that was outfitted with an NVIDIA TitanX GPU along with 12GB of RAM and CUDA version 8.0. While there is still more work to be done in likely getting to the accuracy rate that the researchers are hoping to achieve, this seems to be a good start in perhaps making it possible for more end-of-life patients to receive palliative care.

Complete Article HERE!

With the End in Mind and From Here to Eternity review – how to banish fear and shame around dying

Two very different books about death, by Kathryn Mannix and Caitlin Doughty, look at how we can face our final days with practicality, adventure and joy

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[W]hen John Keats was dying of TB in Rome, just 25 and far from family and home, he wrote a series of beautifully judged, empathetic letters of farewell that deal lightly (yet never falsely) with his physical suffering and his emotional anguish. From the shrinking circle of his life, from his frail body drowning in itself, he reached outwards towards the friends he was leaving. In his final letter, he wrote of living a “posthumous existence”; his last phrase becomes his eloquent, courteous and self-effacing goodbye before he exits the stage on which he has had such a small parcel of time: “I always made an awkward bow.” Dying as a performance, dying as an art and a practice, dying as something solemnly profound and sorrowful and at the same time as normal, natural; dying as physical and as spiritual; dying as the end of a whole world because, as Oliver Sacks wrote, when dying himself: “There is no one like anyone else, ever.”

We live in our bodies and die in our bodies. In previous centuries, death was familiar and not hidden behind institutional walls: before the 20th century, there would have been scarcely an adult who had not seen their parents, some of their children, and their friends die. Moreover, there was faith that it was not the end. People witnessed death, dealt with it, prepared for it, even embraced it (John Donne used to sleep in his own coffin; Jeremy Taylor wrote his 17th-century manuals for the soul, Holy Living and Holy Dying, which became the preeminent works of the ars moriendi tradition; in The Tempest, Prospero consigns himself to an old age in which every third thought will be of death). Now, although we live with the sense of our own ending, we don’t really. We know we’re going to die, but we don’t know. Our body doesn’t know, except in dizzying moments of terror, until the sentence has been uttered and the gallows are being built under the window. Even then, death is often held at bay and life prolonged at all costs: the fragile and disintegrating body is plugged into machines, pumped full of oxygen and blood and drugs, its gallant heart restarted and kept going, no matter the pain, no matter the hopelessness of the endeavour, no matter that at a certain point this isn’t living, just a slowed-down, drawn-out, painful and undignified dying.

It has become easier to live longer, but harder to die well. Most people want to die at home; most die in hospital. Most want to be with family; often they are alone or with strangers. “Their death has been stolen from them,” writes Seamus O’Mahony in his bracing and unsentimental account of dying, The Way We Die Now, which charts how something that used to be public and acknowledged, with a common script, has become an aggressively medicalised and bureaucratic process placed in the hands of experts; sometimes banal, sometimes farcical, sometimes painful or undignified. Modern, sanitised death becomes a dirty little secret, almost embarrassing: our language circles round it, we don’t like to name it, cross the road to avoid those recently touched by it, and shy away from the physical, squeamish fact of it, so that the dead body is whisked away, frequently embalmed (for fear of its smell), cremated in “facilities” that are often in industrial zones.

Lady with the Lamp: Florence Nightingale tending the sick and dying.

Have we lost our way with dying and with death? In the last few years, there has been a crowd of books by doctors, scientists, writers and people who are scrutinising their own departure that have sought to show us different, kinder ways of ending: Atul Gawande, Oliver Sacks, Henry Marsh, Jenny Diski, Tom Lubbock, Marion Coutts, Paul Kalanithi, the luminous final poems of Helen Dunmore… the list is long. Behind them all stands the austere, magisterial work by Sherwin Nuland written in 1993, How We Die. Now Kathryn Mannix joins this distinguished group and her voice, though quiet and calm, is distinctive. A palliative doctor (or “deathwife”), she spends her days with the terminally ill and their families, witnessing and supporting them at times of intense suffering, terror and loss. About a quarter of deaths are sudden and unexpected, but she usually sees the ones that come slowly, over months or years, and while much of her work is diagnostic and medical, one of her crucial tasks is to help those who are dying and their families find ways of dealing with life’s final, great event.

With the End in Mind: Dying, Death and Wisdom in an Age of Denial is Mannix’s account of ways of dying, through a series of vivid stories, most of which disguise the protagonist, some of which are composite tales stitched together from several cases, and all of which are heart-wrenching testimonies to human courage and love. Her purpose is to describe many forms of death – the young man with testicular cancer treated in the room dubbed “the Lonely Ballroom”, the dying mother in the hospice who manages to walk her daughter up the aisle, the 22-year-old with cystic fibrosis, the teenager with leukaemia – and to show how in each case, while a death may be emotionally harrowing, it need not be intolerably painful; while it may be tragic, it need not be ghastly or full of the chaos that accompanies too many ends.

Like those romantic portraits of Florence Nightingale holding her lamp aloft as she walked between beds of maimed and dying soldiers, Mannix’s aim is to shed a soft, clear light on a subject she feels is too often avoided. She wants us to think about what dying and death mean for others and for ourselves and take the fear and recoil out of the subject. Mild, tender and conciliatory, she is punctiliously even-handed. If one story shows how denial is toxic and the truth needs to be gradually and gently revealed, in another she demonstrates the usefulness of denial; if one describes how precious time can be won for a patient, another is an example of how prolonging life can be cruel and death a necessary kindness. One person’s good death is not another’s – we all need to find our own way to take our bow and leave the stage.

I agree with almost everything Mannix says; I would like her, or someone like her, to be my compassionate, wise doctor when I lie dying, easing me out when my time has come. Yet in her desire to show that death can be well managed, she leaves out the mess, fear, pain and unpredictability of so much dying – its scandal, its wildness and its impossibility. Not all passing can be gentle and not everyone can be brought to acceptance in the face of their own obliteration. However we dress it up and think about it, death remains blankly ungraspable and stark.

Enter Caitlin Doughty, American mortician, joyful member of the death-positive movement, who describes what happens to our mortal remains with boisterous relish – “ya tell it like it is”, she wrote in her first book, Smoke Gets in Your Eyes. Skin slip is skin slip; putrefaction stinks. The body fails and the body rots and death is a tragedy and a farce. Jaunty, boisterous and unsentimental, Doughty believes that we in the west have made death and its aftermath into a corporate, perfunctory affair, in which the meaning of an ending is denied. Her mission is to “reclaim public understanding of dying” and to bring individuality and joy back into our dealings with the dead – and so, in From Here to Eternity, she embarks on a journey of discovery: to the only open pyre in America; to a sky burial in Tibet, where the body breaker slices the corpse into parts, pounds the flesh with a mallet, mixes it with barley flour and yak butter or milk, and leaves it to the shrieking vultures to consume; to burial towers in India; to the people of Tana Toraja in Indonesia, where mummified bodies are cared for in their home (offered food, dressed, even given a bed with the living) over months or years until the family can sacrifice an animal and put the dead to their final rest; to Barcelona’s mass bone pits; Mexico’s Day of the Dead. Skulls used as flowerpots, bodies made into compost on a body farm, corpses covered with rose petals, funerals conducted by men with dreadlocks and purple frock coats – what Doughty relishes are those rituals that acknowledge death, its bodily fact and its emotional enormity.

And although the book is in love with extremes, it actually shares Mannix’s desire to be balanced: one culture’s practice is another culture’s taboo. We might not like the thought of ripping the rotting flesh from our loved one’s bones, but for some, burning a body is equally repugnant. What is important is “to hold the space” – to banish our fear and shame, and create a ring of safety around the grieving family and friends where they can mourn, each in their own way.

Animals perish; only humans die – because we are creatures who are aware of our own mortality. This awareness, which can feel vertiginous, unendurable, is also what gives us selfhood, and life shape and meaning. “Death destroys a man; the idea of death saves him,” wrote EM Forster. It is Henry James’s “distinguished thing”, Martin Amis’s backing to the mirror, Rochefoucauld’s sun that we must not stare at too long lest we go blind with seeing. It’s the great nothing; the everything, which makes us and unmakes us, and to which we all come in the end. Nothing is more certain; nothing more bewildering, strange, scandalous, downright impossible, forever true.

Complete Article HERE!

For some people dying alone is not such a bad thing – here’s why

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It seems so obvious that no one should die alone that we never talk about it, but people do often die when they are alone. Sometimes they die in a way that suggests they prefer to be alone as they are coming to the end of their lives. So is it really such a bad thing to be alone when you die?

When a person is dying in a hospital or a care home it is common for the nurses caring for them to summon their family. Many people will have the experience of trying to keep vigil beside a family member. It is hard – as everyday life goes on regardless – and it can be emotionally exhausting. Sometimes, the relative will die when their family have gone to make a phone call or get a cup of tea, leaving the family feeling distressed and guilty for not being there when they died.

There is plenty of research literature, from many countries, devoted to trying to decide what makes a good death. There are differences to be found between countries, but similarities too. One similarity is a belief that no one should die alone.

Rod Taylor was said to have had a good death.

This idea sits well with the view of dying that can be found in many different places. When interviewed as research participants, health professionals – and nurses in particular – commonly say that no one should die alone. There are also many cultural references that suggest that to die alone is a bad thing. Consider, for example, the death of Ebenezer Scrooge in Dickens’s A Christmas Carol, or the death of Nemo, the law writer in Bleak House. These are both sad, dark, lonely deaths of a kind to be avoided.

Celebrity deaths, such as those of comedian and actress Victoria Wood or David Bowie, are described in the news as peaceful or good when they are surrounded by family. Ordinary people who die alone make the news when the person’s body is undiscovered for a long time. When this happens the death is likely to be described in negative terms, such as shocking, lonely, tragic or as a sad indictment of society.

Some people prefer to be alone

Of course, it may be the case that many people would prefer to have their family around them when they are dying. But there is evidence that suggests that some people would prefer to be alone as they are coming to the end of their lives.

My own research found that while hospice-at-home nurses believe that no one should die alone, they had seen cases where a person died after their family members had left the bedside. The nurses believed that some people just want to be on their own when they are dying. They also thought that people may have a measure of control over when they die, and choose to do so when their family are not around.

In the same study, I also talked to older people who were living alone to find out their views about dying alone. I was intrigued to learn that dying alone was not seen as something that is automatically bad, and for some of the older people it was to be preferred. For some people in this group, dying was not the worst thing that could happen – being trapped in a care home was considered to be far worse than dying alone.

Cultural representations of dying suggest that being alone while dying is a dreadful thing. This view is supported by healthcare policy and the practices of health professionals, such as nurses. But we all know people who prefer to be left alone when they are ill. Is it so surprising then that some might wish to be alone when they are dying?

It is time we began to talk about this and to accept that we want different things in our dying as we do in our living. Openness created through discussion might also help to remove some of the guilt that family members feel when they miss the moment of their relative’s death.

Complete Article HERE!