Most Families Wait Too Long to Utilize Hospice Care

Researchers say elderly people are in hospice care for an average of only 12 days. Why aren’t they admitted sooner?

by Gigen Mammoser

[H]ospice centers provide valuable end-of-life care for the elderly.

So, why aren’t more people using these centers?

The Medicare hospice benefit (MHB) was established in 1982 in order to give recipients access to high-quality care near the end of their lives.

But, new research in the Journal of the American Geriatrics Society states that those who utilize the service often do so too late.

The study included 562 individuals, all aged 70 and older with an average age of nearly 87 years.

Of these older adults, only 43 percent of them were admitted to hospice during their last year of life.

While hospice is available to individuals with six months or less to live, researchers found that for half of the study participants their duration of hospice care was less than 13 days.

The authors say underutilization of hospice care can create a burden for healthcare workers, and result in patient suffering.

Why don’t people utilize hospice?

The reason why hospice care isn’t used more frequently is complex.

According to statistics from 2000, only 23 percent of Medicare beneficiaries who died were in hospice care at the time.

The MHB was initially offered for those with end-stage cancer. However, more and people have begun seeking hospice care for noncancer-related ailments.

The problem is that other issues, such as frailty and dementia, may be harder to discern when determining an individual’s eligibility for hospice care.

“It is well documented that the prognostication [predictability] for those patients with a noncancer diagnosis is more difficult and is a complicating factor for physicians and others who refer patients to hospice care,” said John Mastrojohn, executive vice president and chief operating officer of the National Hospice and Palliative Care Organization (NHPCO).

Lead study author, Dr. Thomas Gill, a professor of medicine at Yale University, agreed.

“Cancer tends to have the most predictable course,” he told Healthline, “meaning it is generally easier to predict when someone with cancer is in the last six months of life than someone with another terminal condition.”

“The challenge is even greater for older persons since many die from a combination of different conditions and/or debility, none of which may meet criteria for hospice,” Gill added.

That gets even more problematic when you look further at the results of Gill’s research:

The most common conditions leading to death were frailty and organ failure, not cancer. However, hospice acceptance rates for frailty were the lowest, and for cancer the highest.

Waiting too long

Not only is care jeopardized by condition, but by duration of stay as well.

The median of 12.5 days spent in hospice indicates that even when individuals do utilize the MHB, it is at the last possible moment.

“A large proportion were admitted shortly before they died, which makes it difficult for hospice to optimize its benefits,” said Gill.

Hospice care offers a unique opportunity to individuals who are near death in that it is not intended to cure them.

It is strictly palliative, meaning it is meant to provide comfort and quality of life.

Benefits of hospice care, Mastrojohn told Healthline, include expert pain management, spiritual support, as well as social and physical activities, tailored to the individual.

Hospice also provides service to families through bereavement support to help them deal with the loss of a loved one.

“Hospice is a benefit delivered by clinicians who are expert in the care of those with serious, advanced illness,” said Mastrojohn. “It is my hope individuals would be more open to receiving hospice services so they can maximize the many benefits they need and deserve.”

Changing how hospice is viewed

While this new research helps to highlight the underutilization of hospice care, it does not provide crystal clear answers why.

However, the authors hope that their work will lead to better strategies for addressing those who need hospice care, and getting them enrolled sooner in a program, rather than waiting until the last moment.

But hospice care also represents a difficult dilemma for families, which may help explain why duration of stay is so low.

For some, putting a loved one in hospice care can sometimes be seen as a sign of defeat.

“Some patients and/or families might interpret hospice as ‘giving up,’ but this is clearly not the case,” said Gill.

Complete Article HERE!

Death, too, is part of life cycle

By HOLLY WOLTZ

[I] live, breathe and eat being a veterinarian. I see a pet on a leash, and I check its gait. I see a grey whiskered dog and think of senior issues. I overhear a conversation about a pet’s illness, and I want to add my two cents.

Work is hard. Work is fun, and every day brings challenges. However, I had no idea when I signed up for this job, the sheer number of euthanasias and sadness I would face.

All pets die, and we know this when we adopt them into our lives. We are angels of death to so many, and this is a very, very important part of our lives.

The veterinary profession is unique when it comes to being comfortable with death. Like many aspiring veterinarians, I thought euthanasia would be the hardest part of my job, but it isn’t – not by a long shot.

MDs don’t get it. In the human world, euthanasia is a grave sin even when someone is suffering from a terminal illness.

“Futile care” occurs when a physician cracks the chest of an elderly patient in multi-organ failure who has just arrested, or the oncologist details a complicated journey for a deadly metastatic cancer.

The older you get, the more likely you are to die in a hospital. According to the Centers of Disease Control, 73 percent of people over the age of 65 die as inpatients.

It sounds like a horrible way to go. I hope that statistic changes as more states enact the Death with Dignity Act, and I add more years.

Almost every day I counsel clients as to “When is the right time to let go?” I have changed my criteria for euthanasia over the years and now answer that question with “Consider 6 things that your pet loves to do. If they are no longer able to do at least half of them, then it is time to let go.” This helps, but it is still far from simple.

Every situation and every family is different. I think relief from suffering is a moral obligation, and that it is better to end life too soon than too late. Euthanasia is truly a gift of love.

Never was this more apparent than last week. You might recognize this family because I’ve already written about Buddy.

I shared Buddy, a magnificent Golden Retriever, with Dr. Sybil Davis (a certified rehabilitation specialist).

When I first referred him to her 4 years ago, he could barely walk from a myriad of problems. In 6 months, he was walking and feeling great again.

His family simply refused to give up on him. He’s been a “frequent flyer” patient for both of us over the years.

This visit was different, and when I stepped into the examination room, I knew he was in trouble. He could barely stand and his breathing was labored.

Although Buddy lived in a family of three, he was really the son’s dog. They grew up together, and Alec brought Buddy in for visits. I always thought of Norman Rockwell’s paintings of boys and children whenever I saw them!

After diagnostics and quiet conversation, it was clearly time to let go, but we would not be rushed in making this decision. End of life should be kind – to the owner, as well as the animal.

I tried to walk the emotional landscape that accompanies the decision to euthanize. Do we refer, try hospice care, sleep on this decision for a day or two and reconsider? Could we give Buddy more days of good living? And, if we euthanize, what do we do afterward?

The whole family was present with Buddy, and the parents deferred the decision to Alec. He knew. I could see it in his eyes, but it was too hard to verbalize.

In his heart, he knew that Buddy had finally worn out. What a wonderful young man to put his dog first, and I know his parents were proud of him.

Buddy didn’t know what was happening. All he knew was a sense of tranquility from sedation, a quiet comfortable room and his family surrounding him. He died with grace and dignity, quickly with no pain. It was a gift from his best friend.

I am sometimes overwhelmed by these last moments, but I am also thankful that I can be a part of them. Without great love, there cannot be grief.

Thank you, Alec, for making the right decision, and thank you, Buddy, for the memories.

Complete Article HERE!

Helping create a better death is a new doula concept

By Gary Rotstein

[O]n a sunny Sunday afternoon marked by perfect September weather, a gathering of nine women and one man wasn’t focused on talk about nature, recreation, hobbies or other aspects of enjoying life.

This group instead met for two hours in a downtown Greensburg office building to discuss the dying process and how to make it better.

The attendees at a free community training session about serving as end-of-life “doulas” heard Promise Hospice President Elizabeth Aungier, who hosted the session, talk about the goal of “a better death” for both terminally ill patients and their families. The former nursing home administrator has run her Greensburg hospice since 2010, but in navigating her own father’s death in 2015 she needed to lean on a friend for help.

She realized an additional layer supplementing a hospice team would be useful for families during a daunting, emotional process that is new to many of them.

“After my dad passed away I figured, if I needed extra support and I’m supposed to be an end-of-life expert, what about the individual that doesn’t have that knowledge? How can we help fill the gap between what the medical profession provides and maybe what a family needs?”

Ms. Aungier became intrigued by what she heard of end-of-life doulas and went through training herself last year in New York City from Doulagivers Inc. There she learned communications and technical skills related to helping people with their dying wishes and the closure they sought in relationships with others, as well as more procedural issues such as advance directive preparations and the type of funeral or memorial services they wanted.

Doulas are taught to sit, talk with and — especially — listen to terminally ill people in a non-judgmental way. If it goes right, they learn about their lives, build a rapport and help them face whatever fears they may have about the future. They can do so without the baggage of family members or the requirements of hospice staff who may be on a busy schedule to provide personal care and pain relief before moving on to the next client.

“The doula may spend extensive time helping an individual do a life review or legacy project or tangible account of history we can give to people they leave behind,” Ms. Aungier added, while emphasizing they are to leave medical issues to professionals such as a hospice nurse.

The end-of-life doula concept is new in southwestern Pennsylvania, she said, with New York and California among the still relatively rare places in the country where organizations like Doulagivers provide detailed training for a fee. Doulas are more commonly associated with births; while employed in only a small minority of those, they are nonetheless accepted as providing non-medical emotional and educational support for new mothers.

In either case — for births or deaths — doulas generally lack government certification or regulation and are paid by private resources rather than Medicare, Medicaid or other insurance.

Ms. Aungier sought to supplement her hospice business by starting PromiseCare Doulas in June, advertising $50 hourly services to support dying individuals through their final stages, but it has been slow to find clients. Ms. Aungier is undeterred, believing it’s an important and helpful concept. She has had most of her hospice staff trained in it to help them in their regular duties as aides, nurses and social workers.

“We’ve learned how to be more one-on-one now with patients in the dying process, understanding better how to walk them through that,” said Ginny Cabala-Carper, 28, a hospice aide for five years who was among staff in the spring going through weekend-long doula training sessions Ms. Aungier arranged for them.

“This will help us in our personal life, too,” Ms. Cabala-Carper said. “We’re all going to have loved ones die someday, and this helps me see what my parents and grandparents will need.”

Sunday’s session was the first of a series of free, two-hour educational presentations Ms. Aungier said she intends to provide for anyone from the community. They could be for those interested in being hospice volunteers, whether for her operation or others. They could also be for people simply interested in increasing knowledge to help relatives, friends and neighbors.

And others could treat it as the first step to someday hanging a shingle to offer service themselves as an end-of-life doula, though Ms. Aungier cautioned that they shouldn’t expect an immediate flood of calls.

“People don’t really seem to get it yet,” she said, having heard more commonly from people interested in getting help with bereavement after a death.

Arleen Hawk of Greensburg, a retired hospice social worker who was among the group Sunday, said it sounded to her like doulas could do more for families than the more limited aspects of what she did in her role while working.

“They can take it to the next step and help families feel they’re not missing anything,” she said.

Nisha Bowman, an intensive care unit social worker at UPMC Presbyterian with a pronounced interest in death and dying issues, attended to learn more about the doula concept as someone who may focus her career on end-of-life issues in the future.

“It just make sense,” said Ms. Bowman, 34, of Perry South. “If we have it for births, why not have it for deaths? … To know that there’s people who are trying to help people do death better is very heartening, because there’s still a lot of stigma to it.”

Complete Article HERE!

Why the Irish get death right

We’ve lost our way with death, says Kevin Toolis – but the Irish wake, where the living, the bereaved and the dead remain bound together, shows us the way things could be done

Kevin Toolis … ‘My father’s dying, his wake, his willing sharing of his own death, would too be his last parental lesson to his children and his community. A gift.’

By

[I]n the narrow room the old man lay close to death.

Two days before, he had ceased to speak, lapsed into unconsciousness, and the final vigil had begun. The ravages of cancer had eaten into the flesh leaving only a skeletal husk. The heart beat on and the lungs drew breath but it was impossible to tell if he remained aware.

In the bare whitewashed room, no bigger than a prison cell, 10 watchers – the mná caointe – the wailing women, were calling out, keening, sharing the last moments of the life, and the death, of this man. My father. Sonny.

“Holy Mary, mother of God, pray for us now, and at the hour of our death.”

In the tight, enclosed space, the sound of this chorus of voices boomed off the walls, the ceiling, louder and louder, reverberating, verse after verse, on and on, cradling Sonny into death.

This death so open, so different from the denial of the Anglo-Saxon world would, too, be Sonny’s last parental lesson.

How to die.

If you have never been to an Irish wake, or only seen the movie version, you probably think a wake is just another Irish piss up, a few pints around the corpse and an open coffin. But you would be wrong.

Kevin’s father, Sonny Toolis.

In the Anglo-Saxon world, death is a whisper. Instinctively we feel we should dim the lights, lower our voices and draw the screens. We want to give the dead, dying and the grieving room. We say we do so because we don’t want to intrude. And that is true but not for these reasons.

We don’t want to intrude because we don’t want to look at the mirror of our own death. We have lost our way with death.

On the Irish island where my family have lived in the same village for the last 200 years, and in much of the rest of Ireland, death still speaks with a louder voice. Along with the weather reports of incoming Atlantic storms, the local Mayo country and western radio station runs a thrice daily deaths announcement enumerating the deaths and the funeral arrangements of the 10 or so daily freshly departed. There is even a phone line, 95c a minute, just so you can check up on those corpses you might have missed.

There should be nothing strange about this. In the absence of war and catastrophe, humans across the planet die at an annual rate of 1%; 200,000 dead people a day, 73m dead people a year. An even spread. It’s happening all around you even as you read this article; the block opposite, the neighbouring street and your local hospital.

If the local radio in London or New York did the same as that Mayo station, the announcer would have to read out the names of 230 dead strangers, three times a day, just to keep up.

Of course, if you live in a city such as London, where 85,000 people die each year, you would never know of these things. Such a very public naming of the dead, an annunciation of our universal mortality, would be an act of revelation in the Anglo-Saxon world. And likely deemed an outrage against “public decency” – which would almost certainly lead to advertising boycotts and protests.

More shocking still then would be the discovery of another country where the dying, like Sonny, the living, the bereaved and the dead still openly share the world and remain bound together in the Irish wake.

And death, in its very ordinariness, is no stranger.

My father, Sonny Toolis, was too a very ordinary man. He was never rich or powerful or important. He never held public office and his name never appeared in the newspapers. The world never paid him much attention and Sonny also knew the world never would. He was born poor in a village on an island, devoid of electricity, mains water and tarred roads, in much the same way the poor have been born in such places for most of human history.

Sonny never got the chance to get much of an education and worked most of his life as a foreman on building sites earning the money to pay for the university education of his seven children.

Sonny was good with his hands though. Useful to have around if things went wrong with the electric, the drains, or you needed the furniture moved. He had his limitations; he did not like strange peppery foods, he wasn’t very comfortable wearing suits, and he was terrible at giving speeches at weddings.

He did have a great singing voice, played the bagpipes and the accordion, and taught his children to sing by what he called the air – by listening along. In the 1960s, he bought a 35mm German camera, took pictures, and ran the prints off in his own darkroom. He even shot film on Super 8. But it was never more than a hobby. Like a lot of us, Sonny had some talents he would never fully realise in life.

But Sonny really did have one advantage over most of us. He knew how to die. And he knew how to do that because his island mothers and fathers, and all the generations before, had shared their deaths in the Irish wake and showed him how to die too.

His dying, his wake, his willing sharing of his own death, would too be his last parental lesson to his children and his community. A gift.

The wake is among the oldest rites of humanity first cited in the great Homeric war poem the Iliad and commonly practised across Europe until the last 200 years. The final verses of the Iliad, the display of the Trojan prince Hector’s corpse, the wailing women, the feasting and the funeral games, are devoted to his wake. And such rituals would be easily recognisable to any wake-goer on the island today.

For our ancestors, a wake, with its weight of obligations between the living and the bodies of the dead, and the dead and living, was a pathway to restore natural order to the world, heal our mortal wound, and communally overcome the death of any one individual. An act, in our current, thin psychological jargon, of closure.

Through urbanisation, industrialisation and the medicalisation of death, the wake died away in most of the western world and death itself came to be silenced by what might be called the Western Death Machine. But out in the west, among the Celts, this ancient form of death sharing lives on.

When he was 70, my father was diagnosed with pancreatic cancer – still among the most fatal cancers among western men. Sonny never flinched. He did not want to die but when he knew he had no choice, he never wasted the time he had left. He wasn’t angry or embittered but something wiser – he accepted his death. He got on with his dying the same way as he had got on living, day by day, pressing forward, husbanding his energy.

Sonny’s time had come but neither he nor his community denied his impending death. Unlike the shunning of the Anglo-Saxon world, his house filled with visitors who came to see him because he was dying.

Dying is an exhausting, self-centring act. Sonny, always a powerful physically imposing man, rapidly shed powers like a snake shedding skin. His world shrank to two rooms and Sonny knew he would never see the end of that fateful summer.

Sonny’s fatherhood was ending and my own beginning. Our last words together on his deathbed were very ordinary, bland. “I’ll let you go, son,” he said as I left to return to the city. When I returned, he had lapsed into a coma and could no longer speak.

But our parting was fitting. There was no more mystery to share. No revelation to be uncovered. Our identities as father and son had already been written out in the deeds of our life together; Sonny changing my nappy, not losing his temper in my teenage contrariness, encouraging me in my education and the summers we shared on building sites when I worked alongside him while still a student. And in all the countless ways he showed me in his craft how to be a man and father myself.

Sonny died just before dawn on the longest day of the year at home in the village of ancestors. No one called for help, or the “authorities”. He was already home with us. His body was washed and prepared for his coffin by his daughter and sister-in-law. He was laid out in his own front sitting room in an open coffin as his grandchildren, three, five and nine, played at the coffin’s feet.

His community, his relatives, some strangers even, came in great numbers to pray at his side, feast, talk, gossip about sheep prices or the stock market, and openly mark his death in countless handshakes and “Sorry for your trouble” utterances.

We waked together through the night with Sonny’s corpse to guard the passage out for his departing soul and man the Gate of Chaos against Hades’ invading horde lest the supernatural world sought to invade the living world. Just as the Trojans too before us had watched over Hector’s corpse. A perpetual quorum; dying in each other’s lives and living on in each other’s deaths at every wake ever since.

It was blessing of a kind, an act of grace. We give ourselves, our mortal presence, in such death sharings, or we give nothing at all; all the rest of our powers, wealth, position, status, are useless.

To be truly human is to bear the burden of our own mortality and to strive, in grace, to help others carry theirs; sometimes lightly, sometimes courageously. In communally accepting death into our lives through the Irish wake we are all able to relearn the first and oldest lessons of humanity. How to be brave in irreversible sorrow. How to reach out to the dying, the dead and the bereaved. How to go on living no matter how great the rupture or loss. How to face your own.

And how, like Sonny, to teach your children to face their death too.

Complete Article HERE!

Presentation talks mortality, being prepared

 

By Briana Alzola

[T]he death educator will be giving informational and interactive talks from 6 to 8 p.m. Tuesday, Sept. 19, and 1 to 3 p.m. Wednesday, Sept. 27. Both talks will be the same so interested people should attend one or the other, Wagner said.

Wagner, a new Anacortes resident, has been working on death and bereavement counseling for years. In the 1970s, he was living in San Francisco and saw many of his friends sick and dying from AIDS.

Wagner, who was an ordained Catholic minister, looked into his background in theology and therapy and tried to find a way to help people who were dying or losing loved ones.

The people he was sitting with were dying in a matter of weeks, and he felt like he was just moving from one death scene to the next.

People were having to just figure out death on their own, he said. So he decided to set out to help people understand death as a part of life, rather than a punishment or something to be feared.

People who are aware of their mortality are able to live better lives, Wagner said. Talking about it in a group format also means people don’t have to deal with it alone.

Wagner started a support group as part of a 10-week program. People of all different backgrounds came in to talk and learn, he said. The program featured guest speakers to talk about spiritual concerns, legal concerns, estate planning and more.

The talks he’s offering in Anacortes are a condensed version of that program, which he also outlines in his book “The Amateur’s Guide to Death and Dying.”

His program ran for several years but he put it into book form to reach more people.

The book is set up as a support group, with fictional people talking about issues. All should be able to relate to what is being said, Wagner said.

“There is a place for them to fill in their own thoughts,” he said.

Death is not something people should be told how to feel about, he said. He just wants to open the discussion and give people the tools they need to be ready.

“Death is inevitable,” he said. “We have the opportunity to prepare.”

The talk at the center is aimed at elderly people and their family members. It will be fun, with a lot of humor involved, Wagner said.

The talk is a $15 suggested donation.

Complete Article HERE!

Why being aware of your mortality can be good for you

It is only nothingness … for ever and ever.

By and

[N]obody likes to think about lying on their death bed. From health anxiety to midlife crises, it seems like thoughts about ageing and death can often unleash some level of neurosis. But is that the whole story? We have examined mortality awareness – the realisation that we are all one day going to die – and found that, although the prospect of death is often scary, it can also have positive effects.

Perhaps unsurprisingly, research on death awareness so far has focused largely on the negative aspects of realising that we will eventually stop living. Indeed, until now, the dominant psychological theory has been “terror management theory”, which assumes that contemplating our demise invokes fear and anxiety. For example, studies using this framework have found that thinking about death can make us more punitive and prejudiced.

However, throughout the years, literature from various fields has offered other explanations. For example, “positive psychology” proposes concepts such as “post-traumatic growth” – the idea that people can grow psychologically through traumatic experiences. Thinking about the fact that we will die may be hard, but according to this theory it could also help us to get stronger psychologically.

In our recent study, published in OMEGA – Journal of Death and Dying, we asked 356 participants from 18 to 80 years old questions about their experience of mortality. We asked them to indicate the extent to which they agreed with 89 statements which covered a wide variety of possible attitudes to death awareness. These included “I do not let the fear of dying rule my life”, “I want to be remembered for doing great things for the world when I am no longer alive” and “I am scared of dying before I am old”. In this way, we explored how many aspects of such awareness we could identify.

To see how the results might align with positive or negative features of their experience, we also asked our respondents about how interested they were in their health, how prone to taking risks they were, and how eager they were to conform (such as obeying rules).

Some of the attitudes we identified were negative. These included being fearful, feeling disempowered (realising personal vulnerability in the face of death), and feeling disengaged (refusing to acknowledge death). We found that those people who reported higher levels of disempowerment and disengagement also reported taking more risks and were more reluctant to conform. It may be that people who report taking greater risks do so because they feel that they will die regardless of what they do. Those refusing to conform on the other hand may be attempting to empower themselves in the face of the inevitable.

We also discovered that younger individuals and people with lower levels of education attainment were more likely to have negative attitudes to death. However, it is not all bad news for these individuals. For example, we found there was a relationship between mortality fearfulness and placing a high value on staying healthy. So it would appear that fearing death may cue attempts to control its unpredictability.

The power of legacy

Interestingly, we also found a few positive aspects of pondering mortality. One is accepting it rather than running away or fearing it, which can help us to make the most of our time-limited existence.

We also identified what we call mortality legacy awareness. This is a form of mortality awareness that drives the need to leave something behind after we have gone – thereby outliving and transcending death. This could be a highly creative force.

Having children can make us feel better about ageing and death.

The need for a legacy turned out to be an important contributor to dealing effectively with the prospect of demise, lessening feelings of hopelessness and a lack of purpose. In the study, legacy awareness was found to be correlated with both trying to be healthy and striving for spiritual growth (such as believing that life has purpose).

This suggests that those who are interested in passing down their succession to future generations as a way to transcend death are also likely to take responsibility for their health and place value on their internal development. Artists are the perfect example of this: through their creative legacies, they live on and are never totally gone. Working on leaving a legacy – whether it be producing art, raising a family, passing on family history or helping others – can also be a way for people to better tolerate ageing and face the prospect of death.

Such legacies also help those who remain to cope with their loss. On a more basic level, being aware of our ability to provide a legacy that outlives us can be an excellent way to motivate ourselves to accomplish more, stay healthy, focus on the here and now, and maintain good relationships.

Of course, the results are all based on correlations – we don’t show conclusively that striving for a legacy actually does make people feel more fulfilled. Our latest research project (currently under peer review for publication) has therefore studied 10 people’s experience of mortality awareness in depth – through one-to-one interviews. The outcomes of this work confirmed the findings from our first study and offer additional support to the claim that legacy awareness is a major element in people’s search for meaning – helping to manage death-related anxiety.

So the next time you face a haunting reminder of your death, remember that focusing on what you would like to leave behind could help you turn something terrifying into a positive motivational tool.

Complete Article HERE!

The Prophet and Secrets To A Good Death

I stared at her blood results for a few seconds too long. I felt crushed, my shoulders sagged and I realised that my face had given it all away.

By

[T]he patient couldn’t speak now, but she motioned to my pen. I handed it to her with her own notes – a mistake in retrospect. I need not have worried as she was in no fit state to read. She scribbled on words that broke my heart.

“Doctor, I’m dying aren’t I?”

I whispered back “Yes.”

She nodded; a large tear fell down the side of her face. I tried hard to stop my own tears falling too.

I wasn’t emotional because she was dying, as a doctor you unfortunately get used to death very quickly. No, I was upset because of how she was dying. She was in pain, she was struggling to take breaths, and her family had not yet arrived in their own car as the ambulance had managed to cut through traffic and they hadn’t.

I held her hand as her breaths became shallower, only stepping away when her husband and children finally made it to her bedside just as she slipped away.

It’s difficult to argue that this was a good death. This lady had spent her last moments surrounded by strangers, in a cold and uncomfortable emergency room bed and with the cacophony of hospital equipment as the last sounds in her ears. Her relatives had to give rushed goodbyes.

A bad death

Scenes like this play out every single minute of every single day across the world. In fact, for something we’ve been doing since the beginning of time and despite all the advancements in medical science – the human race is remarkably bad at dying.

The odds are that most of us reading this article will pass away in a manner that leaves much to be desired. [1] We may be taken to a hospital even though there was little to no benefit in doing so, passing away in an ambulance or an emergency room with tubes stuck down our throats and needles in our arms while medics surround us decide what the next move will be and how they’ll break the news to our shocked families, even if all the signs had been pointing towards this for months or even years.

Death is difficult enough without the often-preventable complications that make it more painful and stressful than it needs to be. Even though we don’t talk about it much, there is such a thing as having a “good death.” [2]

What is a “good death”?

A “good death” – the very term seems like the ultimate oxymoron. After all, what can be good about death? It’s the ultimate in bad news. In fact, on a scale of bad things that can happen to someone, death seems likely to be the worst.

Yet, as anyone who has come across death on a regular basis will tell you, there are such things as good and bad deaths. An entire medical speciality called Palliative Care was created to facilitate the former.

From an Islamic perspective a good death is one in which the person dies with Allah being pleased with him or her, or engaged in an action or at a time that is considered pious. [3], [4] While we can never know who is in possession of divine favour, we do know that the Prophet mentioned certain times, modes and places of deaths as having special significance. For example, I remember vividly recalling that family members of Hujjaj, who died in the horrific tunnel collapse of 1990, were comforted by the fact that their relatives died on holy land whilst on the pilgrimage.

However, the commonly held Muslim view of a good death is lacking. It almost entirely revolves around the unknowable relationship between the deceased and Allah, while neglecting more practical temporal aspects. For the purposes of this essay, I want to explore the practical side of a “good death” and show that this is actually part of a neglected Prophetic tradition that we can and should revive.

A good death is described as any passing in which an individual dies as peacefully as possible, in accordance with their wishes and according to their own ethical, cultural or religious standards. [5] This includes dying free of pain, in a location of their preference (usually divided into one of the 3 H’s – home, hospital or hospice) and surrounded by their loved ones rather than medical and nursing staff.

It doesn’t sound complicated does it?

Yet, every single day, the majority of people die in just the opposite way.

So, how do we achieve a good death?

I went looking for inspiration from Islamic history and found answers hidden in plain sight. The clues are scattered throughout the life of the Prophet himself, like scattered pearls of wisdom waiting for us to put them together into a coherent whole.

You can divide the steps required into 6 steps:

  1. Thinking and talking about death

There are many ways of achieving a good death, but they all have the same first step. We need to be prepared to think about it, but in a way that empowers rather than paralyzes us. We need to make it less of a taboo.

The Prophet was the master of this. He used to think about death often and asked us to do the same, but was never accused of being morbid. He taught us, “Remember often, the destroyer of pleasures.” [6]

By bringing talking about death back into polite conversation and into the family life, we remove it from being solely the domain of the mosque and imam. It may mean taking the kids to a funeral or talking to your parents about the funeral arrangements for a recently departed grandparent. Whatever entry point you use, remembering death will help you plan about it.

  1. The warning shot

A warning shot is the first difficult discussion that people have about an impending death. This is when bad news is delivered in a step-wise process so that the impact is less severe on those affected.

Doctors are trained to do this by lowering the tone of their voice, getting the patient worried by asking if they would like to have someone there with them and to generally appear gravely concerned. We then impart the warning shot – usually something as simple as “I’m afraid I have bad news” – and give time for the patient to absorb this before delivering the bad news. [7]

This occurred quite obviously in retrospect with Allah giving the Prophet several warning shots with increasing clarity that his life was drawing to a close. First, Jibreel went through the Quran with the Prophet twice instead of the usual once during their Ramadan reviews. Beyond this, Allah revealed that religion had been “perfected” thereby making the role of the Prophet complete.

In turn, the Prophet passed on these warning shots to us, his community at various opportunities including at Hajj Al Wida and in his khutbas at Masjid Nabawi.

Warning shots are important. They allow us to prepare for the worst-case scenario, rather than live in hope and find ourselves woefully unprepared when the time comes.

  1. Choosing where and how you would like to be cared for in your final illness

The location where one dies is obviously not something everyone has the luxury of choosing. However, for most natural deaths, this is something important and despite most people preferring to die at home, this is not achieved.

The sad truth is that, again, we will spend more time thinking about the hotel room that we stayed in 5 nights in during a holiday years ago than where we would like to see out our final days.

The Prophet was concerned about where he would be during his final illness. He asked rhetorically, “Where shall I stay tomorrow?” multiple times until his wives understood that he wanted to choose where he wanted to stay rather than switching rooms every evening as was his usual custom. He chose for himself the room of Aisha  [8]

A good death isn’t necessarily a pain free one, but it certainly is one in which unnecessary suffering is avoided if the patient wishes. Again, the medical profession has advanced far enough that no one should suffer unduly in his or her final moments, but because patients are unaware as to what is available to them, they continue to suffer. [9]

  1. How should your funeral be conducted?

The rulings on Muslim funerals are fairly specific. So specific, in fact, that we make the mistake of thinking that there isn’t room for personalisation. There clearly is, even if it is limited. Everything from choosing whom you would like to lead your Janazah prayer, at which mosque and who should lower you into the ground can often give people a sense of peace and familiarity with a daunting reality.

The Prophet did the same. He had asked that his body be washed using water from the well of Ghars, presumably because he liked the sweet taste of the water there. Amr ibn Al As asked to be buried with fragments of the Prophets nails in his mouth and under his eyelids. Ottoman Sultans would occasionally be buried with pieces of the Kaaba kiswa on them.

As long as it remains within the boundaries of accepted tradition, it can be comforting to know that you had some say in how your funeral would be conducted.

  1. Where should you be buried?

This is an important decision and for most of us, it won’t matter much because – well, we won’t have to worry about it. However, there is a strong indication that where someone is buried does matter almost as much as where they lived in life. Many a necropolis has sprung up around the tomb of a pious man or a companion of the Prophet like Jannat Al Mualla in Makkah, Eyup Sultan in Istanbul and Bab Al Saghir in Damascus. [10]

It was the cause of much consternation to the sahaaba that they did not know where to bury the Prophet . The relief that was felt by all, when it was discovered that the Prophet had mentioned to Abu Bakr that all Messengers are buried where they die, is palpable. Take a moment to reflect on that conversation. In a mark of how difficult the conversation is, even the Prophet (SAW) didn’t directly tell Abu Bakr where he would like to be buried, but instead made a general statement about all Prophets. This way, he got his point across to his close friend but minimised the heartache.

  1. How should your estate be divided after death?

Inheritance laws in Islam are strictly governed and regulated leaving limited scope for people to go wrong. But unfortunately, most Muslims living in non-Muslim countries, do not have formal wills written up. This means that their estates are at risk of being divided according to the law of the land they die in.

The Prophet was concerned about what would happen to his estate after he died, but his estate was not just the physical objects he left behind. It included the spiritual legacy of the Islamic faith. Therefore, he repeatedly mentioned for Muslims to guard the prayer and to look after the ladies of their house. [11] Not only that, it was clear that he went as far as he could towards nominating Abu Bakr to lead us after his death without actually commanding it.

While you should definitely prepare a will for your physical possessions, also consider your legacy beyond that. Who should educate your children? What advice do we have for them when they grow up? What should happen to our collection of books? Which charities would you like some of your endowments to go to and for what cause?

Your life is so much more than just the money and materials that gets divided up after you die. If you are lucky, those who survive you may try and keep your legacy alive. They would find it much easier if you gave them some directions beforehand.

Conclusion

In the end, the best way to attain a good death is to live a good life – a. A life that is lived in the service of others for the sake of Allah, a life in which there is real meaning and purpose and a life in which death is remembered.

As a Muslim, I know that a good death is one in which Allah is pleased with the person dying. As a doctor, I know a good death is one in which the patient is comfortable and surrounded by their family, not me. As a human being, I know a good death is one that comes after having added value to the lives of my fellow human beings. These are not mutually exclusive and the life of the Prophet (SAW) gives evidence for being able to combine all three.

As the old poem goes, we all have a rendezvous with death. Why not make it a good one?

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