Category: Preparing for Death

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The case for hospice care

By BETH SLEPIAN

A recent analysis published by the New England Journal of Medicine revealed that for the first time since the early 20th century, more Americans are dying at home than in the hospital.

According to the report, in 2017, 30.7% of Americans died at home, while slightly fewer (29.8%) died in hospitals. Another notable statistic from the study is that between 2003 and 2017 the number of Americans who died in hospice-specific facilities grew by 41%, from 0.2% of deaths in 2003 to 8.3% in 2017. According to the National Hospice and Palliative Care Organization (NHPCO), 47.5% of New Hampshire residents on Medicare who died in 2017 were receiving hospice care benefits.

This data does not come as a surprise to those of us who work in hospice care and have the honor of helping families navigate the end-of-life experience.

Up until the mid-1900s, it was routine for people to die in their homes, cared for and surrounded by loved ones, but by the 1950s, more Americans died in hospitals. The concept of “death with dignity” was introduced in the United States in the early 1960s, sparking the movement toward hospice care.

The hospice movement gathered steam in the late 1970s with the formation of the National Hospice Organization, and by the mid-1980s, the federal government formalized the hospice benefit for people on Medicare.

Concord Regional VNA has been caring for people in their homes for 120 years, providing nursing, therapy, personal care, homemaking and other services to people of all ages. For more than 30 of those years, we have provided specialized end-of-life care, guidance, and support to patients and families. In 1994 we expanded our hospice service by opening the first Hospice House in New Hampshire on Pleasant Street in Concord. We have served thousands of hospice patients and their families over the years, including nearly 1,000 patients in 2019.

While it is true that hospice care comes into play toward the end of a person’s life, there are many common misconceptions, such as:

■ Hospice care is only for the last few days or weeks of a person’s life;

■ It is only for people with cancer, people in severe pain or those who have a “do not resuscitate” order;

■ People on hospice do not receive treatment, they’re just kept comfortable with medication;

■ Hospice is a “place” where a person goes to die;

■ Hospice hastens death;

■ People on hospice must give up seeing their primary care providers;

■ Hospice care is focused on the patient and ends when the patient dies.

Hospice care is much more than meeting patients’ medical needs. Hospice care empowers patients to have a voice in their end-of-life experience, and to help them through it with as much comfort, grace and dignity as possible. It is about compassion – for them and their loved ones.

Some people choose to begin receiving hospice care in the final weeks or days of a terminal illness, but it is not unusual for patients to begin hospice care many months before they eventually pass.

People who receive hospice care through Concord Regional VNA benefit from individualized care coordinated with their care team, which may include their primary care provider and other clinicians. They may receive nursing care, physical and/or occupational therapy, pain management, spiritual care, social work , including emotional support and companionship – all in the place they call home, which could be a private residence, an independent living or assisted-living community, or a skilled nursing facility. Those who need more intensive care may opt to receive care at Hospice House.

Equally as important in this journey are the caregivers, who are most often the patients’ loved ones. Hospice care is about them, too. In addition to day-to-day assistance with patient care, loved ones may receive emotional and spiritual guidance and support from our counselors and spiritual care providers; help with end-of-life planning; much-needed respite care; and myriad other services. And it is important to note that hospice care does not end when a patient dies – our bereavement counselors and support groups help loved ones as they learn to cope with their loss for as long as they need us.

Hospice care is also about volunteers. The hospice movement was started by volunteers and they remain a crucial component to this day. In fact, Medicare requires that volunteers provide at least 5% of total patient care hours, which can take the form of direct support, spending time with patients and families, or performing tasks that support hospice care services. Concord Regional VNA is incredibly fortunate to have nearly 100 volunteers from the communities we serve who give their time and energy to our hospice patients and their loved ones.

So what does this mean and why does it matter? The recently released data suggests that more people have come to understand that receiving care in the comfort of home – in familiar surroundings, in proximity to loved ones and friends – is a preferable and realistic option. From a clinical standpoint, studies show that patients who receive hospice care live longer than those with similar diagnoses who do not receive hospice care. Receiving care at home also has a significant positive impact on overall health care costs.

Death is a fact of life. Patients often tell us that choosing hospice allows them to feel in control, and managing their symptoms helps them feel more at peace. Choosing hospice is not giving up, rather, it is choosing to live fully until you die.

It is not meant to be scary; it is meant to help people live each moment to the fullest and to pass with dignity and respect surrounded by love.

We at Concord Regional VNA are privileged to help patients and their loved ones navigate this journey, and proud to have been providing hospice service to the people of Concord and the 43 other New Hampshire communities we serve for more than 30 years.

Complete Article ↪HERE↩!

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The struggle to create a new craft of dying

—what is medicine’s role?

By Richard Smith

“Lyn Lofland’s The Craft of Dying (1978) is one of the most important books on post WWII death and dying practices that almost no one has read,” writes John Troyer, director of the Centre for Death and Society at Bath University. He thinks that everybody interested in death and dying should read the book. I agree. Potentially that means that every human being should read the book—because who cannot be interested in death, arguably the most important thing about us. Plus The Craft of Dying is short, easily read, full of compelling stories, and constructs a clear argument.

“Death can neither be “believed” nor “magicked” nor “scienced” away,” writes Lofland in her first line. But we can’t stop ourselves from thinking about it: “Everywhere and always humans think about it and develop beliefs regarding it and produce emotions toward it and do things relative to it. What they think, believe, feel, and do is, of course, variant. But that they think, believe, feel, and do is a universal.”

Every culture has developed beliefs and customs around death, but human death, argues Lofland, has changed dramatically in the past 60 years. Until that time people died mostly of infectious disease and injuries. The period of dying was short, and it was clear when people were dead. Medicine had little to offer. Now people die mostly of chronic disease, and the length of dying is long. Death is not easily defined, and doctors have much to offer, including long term ventilation, heroic operations, and drugs, some of them extremely expensive.

“In the past few decades, medical science has rendered obsolete centuries of experience, tradition, and language about our mortality, and created a new difficulty for mankind: how to die,” writes Atul Gawande in Being Mortal, published in 2014. Lofland wrote something similar in 1978: “There exists currently no widely accepted, fully articulated, well-integrated dogma that gives ‘being dying’ its meaning or its place in the larger scheme of things.”

A cultural vacuum has been created, and inevitably attempts are underway to fill the vacuum. We have entered a new age of what Lofland calls “thanatalogical chic”: in the contemporary cliché “death is the new black.” We have to decide how to die, where to die, how to dispose of the dead, how to mourn, and, most difficult of all, what death means.

One response has been what Lofland teasingly calls “the Happy Death Movement.” It is an inchoate social movement with many practitioners, strands, and different views, but Lofland sees patterns that were emerging in the 70s and are still emerging.

Firstly, a social movement needs an enemy, and the enemy of the Happy Death Movement is death denial, death as the great taboo. Lofland defines the enemy: ”America is a death-denying society…death is a taboo topic…death makes Americans uncomfortable so they run from …death is hidden in America because Americans deny it….” For America, Lofland’s home, we could substitute any high-income country—or even any high-income group within a poor country. “The consequences of all this denial and repression are,” continues Lofland, “asserted to be quite terrible: exorbitant funeral costs and barbaric funeral practices, inhumane handling of dying in hospitals, ostracism of the dying from the living, inauthentic communication with the fatally ill, an unrealistic, mechanical, non-organic view of life, and so forth.”

Lofland is dismissive of the idea of death as taboo: “One might consider it somewhat odd that the statement that death is a taboo topic in America should continue to be asserted in the face of nearly a decade of non-stop talking on the subject.” Talk, writing, and storytelling about death has continued unabated ever since and probably increased. It is probably fair to say, however, that there is much less familiarity with the experience of death: dying people, the signs of death being close, dead bodies, and the disposal of the dead.

A social movement also needs something to shoot for, and for the Happy Death Movement it’s some form of idealised premodern death, with the dying person at home surrounded by loved ones and calmly bidding them goodbye. Lofland is dismissive of this as well, including in her book stories of the dying being buried alive (in Samoa) and ignored while families party (in Tahiti).

As you would expect, the attempts to create new behaviours and beliefs around death reflect broader cultural trends, which Lofland identifies in the United States as “ ‘humanistic-counterculture’ denouncement of modern society in general, which denouncement emphasizes the Western world’s dehumanizing, unemotional, technologically dominated, inauthentic, and constricted character.” That cultural trend is alive and flourishing in most Western societies. “Why not,” asks Lofland, “with Carl Jung, speak of “the achievement of death” and view dying as the final creative task of our lives?” A director of spiritual services (what used to be called a chaplain) I met recently in a hospice told me of the tremendous pressure on people to have a “good death.” This immediately evoked for me the pressure on mothers to have a “good” or “natural” birth.

Emphasising that the Happy Death Movement is still forming, Lofland identifies how the movement will make dying better. Firstly, it’s essential to talk about it. For example, the Order of the Good Death, an organisation founded by a Californian mortician, has eight tenets—and three of them concern talking about death

“2. I believe that the culture of silence around death should be broken through discussion, gatherings, art, innovation, and scholarship.

3. I believe that talking about and engaging with my inevitable death is not morbid, but displays a natural curiosity about the human condition.

7. I believe that my family and friends should know my end-of-life wishes, and that I should have the necessary paperwork to back-up those wishes.”

Secondly, death must be rearranged, moved from hospital to hospices and the home. Death in hospital is failure. Thirdly, we must legislate death with advanced decisions and assisted dying.

Lofland also identifies emerging components of the new craft of dying. Expressivity is essential, but it’s also important to not just embrace death, but to celebrate it. (I’ve done this with my talk, delivered once at the Edinburgh Festival, “Death: the upside.”) Finally—and for me surprisingly—the Happy Death Movement wants us to believe in immortality. Lofland describes how Elisabeth Kübler-Ross, who might be called the doyen of the Happy Death Movement and whose hugely influential book On Death and Dying proposed in 1969 the five stages of grief (denial, anger, bargaining, depression, and acceptance), came to believe in immortality. The pursuit of immortality, long a dream and arguably the unique selling point of Christianity, now attracts serious people and serious money. 

The other two components of the emerging craft of dying are expressivity and positivity. Talk and write about your dying and coming death and celebrate your coming death and the death of those you love. New rituals will be needed, and some like “living funerals” are beginning.

Lofland is a sociologist, an academic, an observer, but you feel that she is not in fully sympathy with the Happy Death Movement. Indeed, she conjures the idea of a Dismal Death Movement to counter the Happy Death Movement: “If expressivity comes to be widely accepted as the only way to achieve a decent death, the emotionally reticent will find themselves under great pressure to ‘share.’ If the idea that death and dying provide new opportunities for self-improvement becomes common currency, the chronic under achiever will find himself facing one more opportunity for failure. Not ‘getting off’ on death may become as déclassé as sexual unresponsiveness. Then perhaps, a ‘dismal death’ movement will rise to wipe the smile from the face of death and restore the ‘Grim Reaper’ to his historic place of honor.”

There is a little about medicine and healthcare in Lofland’s book, and nor does the Order of the Good Death have much to say on the subject. But I wonder how much medicine and healthcare—gigantic, well-funded enterprises—might come to fill the need for new ways to die. Ivan Illich certainly argued that that was the case in his book Limits to Medicine, published at about the same time as Lofland’s book. Death “is now that point at which the human organism refuses any further input of treatment…Health, or the autonomous power to cope, has been expropriated down to the last breath. Technical death has won its victory over dying. Mechanical death has conquered and destroyed all other deaths.” Indeed, it is by taking on death that “health care has become a monolithic world religion.”

All those who read Lofland’s book agree that it could have been published in 2018 not 1978 and be equally relevant. The struggle to create a new craft of dying is far from over, and those of us in medicine and heath care have a particular responsibility to think and act on medicine’s role in the struggle. Almost certainly its role should be smaller.

Complete Article ↪HERE↩!

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‘I’ve been saying goodbye to my family for two years’

Last year the author wrote about parenting with motor neurone disease. Here, he reflects on the end of life, before his death two weeks ago

Joe Hammond with his wife, Gill, and sons Jimmy (left) and Tom in 2018.

By Joe Hammond

In the beginning I was just a dad who fell over a bit and then couldn’t drive the car. Then we had a name for what was happening to me: motor neurone disease. The rest of my physical decline has taken two years and I now write with a camera attached to a computer, which tracks reflections from my pupils. I can use the same device to talk with my synthetic voice. It’s obviously slower to use, and has trained me to get to the point, in much the same way that dying has.

In the room next door, as I write, I can hear Jimmy, my two-year-old son, offering to take passengers on a bus ride to various destinations. It’s half-term and Tom, my seven-year-old, has wandered out into the garden. He’s smiling, looking back at the house, as he points out a squirrel to someone standing inside. There’s adult laughter, too. I can hear Gill, my wife, talking with one of my carers.

I’m in an adjacent downstairs bedroom, suspended in a sling that hangs from the ceiling hoist. It’s positioned over a bedpan, and my floppy neck is wedged upright between a pillow and a piece of foam. I usually stay here for a while because it also has a view of the garden. It’s gusty and leaves are twirling down from an ash tree.

I realise I’ve been saying goodbye to my family for two years. Always imagining this version of myself, without a voice or moving parts. But now I’m here, I can see that we’re all just interested in the same thing: how anxious all these squirrels are as they bury their treasure in the turf. How they keep looking back over their shoulders. And how life just carries on, until it doesn’t.

There was a moment halfway through my decline when Tom needed to check whether he would die one day. He was wrapped in a blanket on my lap as I confirmed its inevitability. He sobbed and I pulled the sides of the blanket in around him. After a few moments his tears came to an end, and five minutes later he was upside down on the sofa giggling at his toes.

Children walk past spiders’ webs all the time and see little things dying. Death is all around them; they know this better than their parents, who have often forgotten. I know I had. But children haven’t reached this stage yet. Death and dying can be known. It doesn’t stop them laughing at a fart or making an empty crisp packet go pop.

Jimmy was at my bedside a few mornings ago dispensing imaginary ice-cream. I was staring upwards, and I could hear him low down to my right. I opened and closed my mouth to show that I was eating some of the “[va]nilla” on offer but, silent and motionless, I don’t know if he noticed, and then I heard him padding away into the next room.

I can’t be active in the life of my children. I have to see what the day brings. There was the moment last week when Tom rested his cheek into my upper arm, gently twisted the top of his head upwards against my flesh like a nestling cat, then twirled away. It was a moment that must have lasted five seconds at most but I kept it with me – held on to it – for days, as if I wasn’t just making contact, but taking an imprint.

I owe these moments to materials that are both plastic and hollow. To an expanding network of tubing crisscrossing my body: transparent blues and yellows, concertinaed or smooth. The largest gauge of tubing has the central importance of the eastbound M4 heading into London. This is the one swooshing air and oxygen into my lungs, but there are other tiny subcutaneous tubes more like narrow Cornish lanes, trickling a minuscule palliative cocktail just under the skin of my bicep. The other key thoroughfare is the one delivering sticky beige nutrition through a macaroni-sized tube running directly into my abdomen.

Tubes are now a way of life and, with so many doctors and nurses coming and going, there’s plenty of spare tubing lying around. This place is like a fisherman’s cottage but with coils of plastic everywhere – in wicker baskets or hanging from hooks. A lot of it ends up in the bath with my two boys. Or it becomes part of Jimmy’s marching trumpet band.

When I was diagnosed, my heart broke in different ways, but some of those feelings have softened. It was always the tiny pieces of future that hurt. I’d imagine Gill and Tom and Jimmy unloading shopping, or just being listless together on a Sunday.

But I’m very still with this disease now: I’m an observer, sensing lives happening in other rooms. I hear bottles and cans rattling in plastic bags. I see the rain at three o’clock on a Sunday. All this detail goes by or around me and I see it working. I see three people moving and turning together – and it’s no longer breaking my heart. It’s just sad and comforting. I didn’t expect the end of my life to feel like the future.

Hammond and his family at home last month.

I see and hear my family clowning around and I want so much to be in there with them – teaching my children to brush their teeth in the style of a camel. Instead I’m unnaturally still – observing the way their bodies move to express or receive humour. The way a back curves, or a head is thrown back. Watching hands thrust out wide, or even the opposite of such movements. All the infinite expressions. But I’m not clowning around any more; I just see it going on – how ornate it is, how beautiful.

Other losses are simpler and more incremental. Sometimes they are nothing more than adaptation and sometimes, like the loss of my voice, they are devastating. I lost my swallow very quickly. There was a three-week period when Gill made sure I had lots of really nice soups, and that was it. Food was a thing of the past. I’ve never got over that loss.

I’m fortunate that my ventilator filters out the aroma of most foods, replacing them with a smell like the inside of a plastic bucket. Occasionally smells get through, like roast lamb or the mist that comes from Tom peeling an orange, but mostly I’m assailed by food memories. The most recent is of the yellow Styrofoam containing takeaway from a Lebanese restaurant. Other food memories are more permanent and catastrophic, and these are all the foods I ever made or shared with my young family.

When the boys are in bed, Gill climbs up on to my hospital bed and sometimes falls asleep. It can feel like I’ve been waiting the whole day for this moment. Watching Gill asleep always feels like such peace to me, and some of this article would have been written with Gill by my side in that way.

It’s really hard to cry when you rely on a mask for air. I use a mask that’s attached to my nose, so when I cry my mouth stretches wide open and all the valuable air gusts out, like a badly insulated letter box. And the camera I use to communicate can’t track the progress of my pupils, so crying is a form of incapacitation. It’s so much easier for Gill, who can stretch out on the bed and sob without any of these secondary difficulties. It’s not that we’re always crying together. It just happens sometimes. Recently Gill’s been reading to me from old travel diaries, written in the days before we had children. Stories of mountains and recklessness on motorbikes, other countries. The past feels so luxurious.

But now it’s the present. It’s all been leading up to this. Sad but no longer broken. Here with Gill. It’s a magical kind of sadness, saying goodbye. A bit like preparing to travel again, but no longer together.

Complete Article ↪HERE↩!

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Machine Learning Could Improve End-of-Life Communication

Using machine learning, researchers were able to better understand what end-of-life conversations look like, which could help providers improve their communication.

By Jessica Kent

Machine learning tools could analyze conversations between providers and patients about palliative care, leading to improved communication around serious illness and end-of-life treatment, according to a study conducted at the University of Vermont’s (UVM) Conversation Lab.

Discussions about treatment options and prognoses amid serious, life-threatening illnesses are a delicate balance for nurses and doctors. Providers are communicating with people who don’t know what the future holds, and these conversations are very difficult to navigate.

Researchers at UVM wanted to understand the types of conversations patients and providers have around serious illness. The team set out to identify common features of these conversations and determine if they have common storylines.
“We want to understand this complex thing called a conversation,” said Robert Gramling, director of the lab in UVM’s Larner College of Medicine who led the study. “Our major goal is to scale up the measurement of conversations so we can re-engineer the healthcare system to communicate better.”

Researchers used machine learning techniques to analyze 354 transcripts of palliative care conversations collected by the Palliative Care Communication Research Initiative, involving 231 patients in New York and California.

They broke each conversation into ten parts with an equal number of words in each, and examined how the frequency and distribution of words referring to time, illness terminology, sentiment, and words indicating possibility and desirability changed between each decile. Conversations tended to progress from talking about the past to talking about the future, and from happier to sadder sentiments.

“We picked up some strong signals,” said Gramling. “There was quite a range, they went from pretty sad to pretty happy.”

Discussions also tended to shift from talking about symptoms at the beginning, to treatment options in the middle and prognosis at the end. Additionally, the use of modal verbs like “can,” “will,” and “might,” that refer to probability and desirability also increased as conversations progressed.

The findings reveal the importance of stories in healthcare for patients, researchers noted.

“At the end there was more evaluation than description,” said Gramling. “What we found supports the importance of narrative in medicine.”

The team is now focused on using the machine learning algorithm to identify the different types of conversations that can occur in healthcare. This could help providers understand what might make a “good” conversation around palliative care, and how different conversations require different responses. Providers could then match patients to interventions they need the most.

“One type of conversation may lead to an ongoing need for information, while another may have an ongoing need for functional support,” said Gramling. “So one of the ways those types can help us is to identify what are the resources we are going to need for individual patients and families so that we’re not just applying the same stuff to everybody.”

A deeper understanding of these conversations will also help reveal what aspects and behaviors associated with these conversations are most valuable for patients and their families. Educators could then effectively train providers to have the skills needed in palliative care.

Researchers believe that the most useful application of the machine learning tool could be at the systemic level, which could monitor how patients respond to providers in aggregate.  

“I think this is going to be a potentially important research tool for us to begin fostering an understanding of a taxonomy of conversations that we have so that we can begin to learn how to improve upon each one of those types,” said Gramling.

“We already measure other processes of clinical care, we just don’t do it routinely for actual communication.”

Researchers have recently applied artificial intelligence tools to the realm of palliative care. A study published in September 2019 demonstrated that a predictive analytics tool can help increase the number of palliative care consultations for seriously ill individuals, leading to improved quality of life for patients and their families.

“There’s widespread recognition of the need to improve the quality of palliative care for seriously ill patients, and palliative care consultation has been associated with improved outcomes for these patients,” said the study’s lead author, Katherine Courtright, MD, an assistant professor of Pulmonary, Allergy and Critical Care, and Hospice and Palliative Medicine.

Complete Article ↪HERE↩!

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As a Muslim Mariam lives the ‘five before five’

— and finds meaning and balance as a death doula

Mariam’s serious car accident led her to engage with Muslim attitudes to death.

By Alice Moldovan

“I collided head on with a truck, the car caught on fire. It was a huge emergency operation,” says Mariam Ardati.

It was one of those car accidents “you think nobody could have survived.”

When she crawled out of the wreckage of her car, Mariam was amazed to see that she didn’t have a single scratch on her.

As a body builder, Mariam had considered herself invincible at the time — at the peak of her fitness.

The close brush with death turned her thoughts to what would have happened to her body under Islamic tradition if she had in fact, died.

“I walked away thinking, ‘where would I have been buried? What would have happened to all my things?'”

After recovering from the trauma of the accident, Mariam says she walked into a funeral parlour and said, “teach me, show me what happens when someone dies”.

The experience prompted a spiritual journey to reconnect with the Sunni Muslim faith she had grown up with.

“I was largely self-centred up until that accident happened,” she told RN’s Soul Search, “and it helped me find purpose and meaning.”

For the last 15 years she has helped other people in the Muslim community through the transition from life into death — as a doula.

Mariam supports the dying and their families in the lead up to death, then leads the ritual care for the body of the deceased.

Anyone can take part in death care

Mariam says women have always performed the final rites for other women.

She wants people to know that there is a range of jobs that family members can do to assist after their loved one has passed away.

Supporting the head, washing the body and brushing the hair are all meaningful ways to care for the deceased.

Mariam describes how she bathes a body an odd number of times, starting with three.

“The first wash is done with soapy water. The second is with clean fresh water. And the third is water that’s poured over the body that’s been infused with camphor.”

Then family members will wrap their loved one in a death shroud that has been perfumed with incense.

“This is afforded to every Muslim that passes away,” she says.

Mariam recalls a woman she worked with who didn’t think she could enter the room where her mother’s body was undergoing the ritual washing.

“She stood at the door of the mortuary and said, ‘I don’t think I can do this, this is just too much for me’.”

Mariam reassured her that she could just watch.

Mariam Ardati says becoming a death doula has helped her find purpose and meaning.

The woman saw the water running, saw Mariam stroking her mum’s hair and talking to her, offering prayers.

By the end of the whole process, the woman had taken over.

“I took a step back and watched her — with a lot of tears and a lot of emotion — go through each ritual in its entirety.”

Mariam says seeing a daughter perform these last rites for her mother “as she’s working through her emotions and coming to terms with her grief is such a powerful thing to witness”.

She recalls many women who say, “I’m so grateful for the fact that I was able to honour my mother in that way,” or “I was able to hold my sister one last time”.

The ‘very human touch’ of burial

Muslim burial rituals have a “very human touch”, says Professor Mohamad Abdalla, referring to the practice of men going down into a grave to lower a body in with their hands, sans coffin.

Mohamad is the director of the Centre for Islamic Thought and Education at the University of South Australia.

He explains that the body is positioned with the head facing Mecca, the traditional direction of prayer.

“With the soil of the grave they make a small pillow to lay his or her head,” Mohamad says.

Mohamad says Muslim funeral practices revolve around honouring and caring for the dead.

Three quarters of the way up the grave, small edges are carved out to hold several planks of wood.

“The soil is poured over the planks of wood, not touching the body of the deceased, essentially leaving about half a metre … for the circulation of air for natural decomposition.”

Muslim death ritual requires the body be buried as quickly as possible, which can be difficult in the event of a sudden death.

“It’s an honour to bury the deceased within 24 hours,” Mariam says.

She’s referring to the belief that after death, the soul ascends and is given “the glad tidings of heaven”.

When the two are reunited in burial, the soul shares that news with the body, remaining connected throughout the process.

Organ donation and autopsies can complicate the ritual and throw timing off.

“We do exercise our rights to object to an invasive post-mortem, as do other faiths and communities,” Mariam explains.

“We believe that process is an undignified act.”

However, there are alternatives for Muslims, for instance in the case of an unexplained or suspicious death, explains Mohamad.

“In the classical Islamic civilisation, autopsy was undertaken to understand the human body and blood circulation.”

Beyond autopsy, medical procedures after death are technically allowed, because preservation of life is one of the most important objectives of Islamic law, Mohamad says.

He explains that as long as the donor or their family consents voluntarily, organs are not sold, and the organs are healthy, it is a highly virtuous act.

“But the minority viewpoint says a person has no right to dispose of their body as they wish, because it is a trust from God,” he says.

Much of Mariam’s energy is directed to increasing death literacy in the community — helping people become accustomed to the idea of dying.

She encourages the same open approach at home with her own children, in a “mother-daughter bonding exercise”.

“I have cut my own [death] shroud, and I had my daughter by my side with the measuring tape saying, ‘No mum, that’s too short, we need to make it longer this way’.”

‘Five before five’

Mariam sees her job as an opportunity to serve God through caring for other people.

“When you’re living the life of a Muslim, you’re living between two states,” she explains.

One of those refers to “fearing retribution or the accountability of your sins”, and the other is “believing in the hope and mercy of God”

Mariam says she looks for the balance between the two.

It’s a sense of purpose that leads to an understanding that “your actions have consequences, and that you’re part of a larger social context”.

A Muslim is encouraged “to take advantage of what’s known as the five before five,” she explains.

“Your health before sickness, your life before you’re overcome with death, your free time before you become busy, your youth before your old age and your wealth before you become poor.”

Mariam says Muslims’ relationship with God is “underpinned by the understanding that God is the provider of infinite love, compassion and mercy”.

But for a person to earn that favour, she or he must live a life that’s conducive to those values.

In death, Mariam sees our final transition as a deeply communal responsibility, one that she is humbled to be part of.

She says she’s glad her own encounter with a near-fatal accident showed her that she wasn’t invincible.

Rather, it gave her a sense of purpose and meaning.

“I didn’t find that in the world of the living — I found it in the world of the dead.”

Complete Article ↪HERE↩!

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How Friendship Changes at the End of Life

“People become frightened at the end of life. Sometimes I see them moving away from friends as they get sicker.”

By Julie Beck

Julie Beck talks with two women who met through the nontheistic religion of Ethical Culture and have spent a significant amount of time ministering to aging and dying members of their congregation. They discuss how friendship changes at the end of life, and how they work to foster connection and community for members of all ages.

The Friends:

Anne Klaeysen, 68, a recently retired clergy leader for the New York Society for Ethical Culture and a humanist chaplain at New York University. She lives in Brooklyn.
Liz Singer, 71, a geriatric-care manager and the president of the New York Society for Ethical Culture. She lives in Fort Lee, New Jersey.

This interview has been edited and condensed for clarity.

Julie Beck: How did you two meet and begin ministering to the dying together?

Anne Klaeysen: Liz became a member of the New York society maybe seven years ago. I am always at the monthly newcomer reception, so we met there. She just dove right in, and shortly became the president of the board. I have to confess, Liz, I get a little worried when people dive in so quickly. I’m thinking, Oh dear, is she going to drown? Liz did not drown; she’s a strong swimmer. Liz came at a time when we really needed strong leadership. And she wasn’t afraid to take on a couple of the old boys. So I think there was certainly a feminist bond there. [We became] partners in crime, or [rather] partners in good works.strong>Liz Singer: We have a strong aging population. I think 30 percent of our members are probably over 70. And we started to see things like dementia. As Anne and I developed our friendship, we began having conversations on the very delicate process of aging and navigating our roles with the members.

Anne: Liz is a geriatric-care manager. Her expertise in this field was invaluable, but I was a little concerned because I didn’t want to take advantage of her. Members don’t mean to take advantage, but sometimes they do.

Also, our members are humanists. We’re a nontheistic religion of ethics. So most of our members don’t believe in a supernatural deity, nor in an afterlife. And they’re fiercely independent. One of our challenges has been to get them to tell us when they’re going through something. Very often we find out about things after they’re in the hospital. It’s not that they don’t trust us; they have a real fear of losing their dignity.

Another society member, Barbara Simpson, runs something called the Death Café. That’s an opportunity for folks to come and really speak about living. We know that we are mortal, and the gift of that is we can live life more completely and in connection with each other. It’s really a joyful experience for [our members]. Barbara has said that very often people are comfortable talking about [mortality], but their children aren’t. [They’ll say], “No, Mom, you’re never going to die; you’re not going to die yet.” People may have their life in order, their papers in order, but their children are in denial.

Anne Klaeysen (left) and Liz Singer (right) sharing a meal together.

Beck: Was there a turning point where you went from having a collegial relationship to more of a friendship?

Liz: The turning point was probably our first serious case, five or six years ago. There was a woman who was estranged from her daughter. Very stubborn. We were trying to bring the daughter back into the picture and make that relationship communicative. Because it was so difficult, Anne and I had to talk about it all the time. The trick was for Anne and I to work together very closely. Anne was having lunch with [the older woman], and gaining her trust. And I was trying to bring in oversight without activating her stubbornness.

Anne: [The woman] left the society for a while because she didn’t get along with people. People didn’t quite come up to her standards. When she came back I was thinking, How can we help her to fit in? How can we help her not be so judgmental? One really good connection was with the children [in our congregation]. I suggested that she come meet with the children, and tell them about her experience. She was a Holocaust survivor; she was on the kindertransport train from Germany to England. I wanted her to be connected with the children, because she was estranged from her own daughter. And she was kind of prickly around some of the adults. The children were so appreciative, and so affectionate with her. They wrote to her when she wasn’t well. They drew her pictures. That’s another thing that a community can do when it’s intergenerational: connect at all ages of one’s life.

Beck: Being with people at the end of life is very intense work. You are regularly seeing a part of life that a lot of people don’t see, or see very rarely. How do you feel that affects your relationships generally and your friendship specifically?

Anne: Generally I have a great appreciation for what the elderly are going through. A big challenge with one of our members was the lack of understanding among hospice and health-care staff for people who are humanists, who don’t believe in God, and don’t believe in an afterlife. It was really difficult for this person when others around her were saying, “Oh, don’t be afraid. God loves you.”

I’ve been on different panels to try to train people not to assume that they are caring for God-fearing people. Just listen to these people. Even when they have dementia. They may not know where they are, they may not remember things, but you’ve got to listen.

Liz: How does it affect my personal life? Number one, it [gives me] an appreciation for life. Number two, I have a reputation when I go to dinner parties. Don’t bring up any questions about aging or I’ll get on a soapbox.

Beck: You mentioned that sometimes you are ministering to people who are your friends, which I imagine is very special, but at the same time could make the balance harder.

Anne: It does. Keeping our work separate from [our personal lives] is a challenge. Where do you draw the line for someone who’s a friend and someone that you’re pastoring to in a professional capacity? But there’s a part of me that wants my life to be integrated. You don’t want to compartmentalize, but you also don’t want to become so involved that you lose perspective. One thing Liz and I do in our friendship is try to help each other keep that balance.

Beck: Is there anything that you’ve observed about how friendship changes at the end of life?

Liz: People become frightened at the end of life. Sometimes I see them moving away from friends as they get sicker. Once people get past that fear of what’s going on, they can be friends again.

Anne: Partly, [what changes is] a sense of loss. My dad died at 101. He was hale and hearty up until the end, and very sound of mind. I remember him saying that all of his friends had died on him. But because he was hard of hearing, it was difficult for him to make new friends. I think a lot of the infirmities that are experienced in advanced age make it difficult to make new friends. Often at the New York society, I see people who become a member after a spouse has died. They’re grateful to have a group of people with whom they can socialize.

I don’t want to sound stereotypical here, but women have been raised to develop those social skills. Men have very often relied on women to do that for them. What we find is that, in the aging population, women are able to cope better. Men who have relied on a spouse or a girlfriend lack those skills. They prefer to have a woman in their lives who can do that for them. That’s the way they were raised. It’s really difficult for them.

Beck: Because of this work, are there things you’re able to talk about with each other that are harder to talk about with your other friends?

Liz: [Anne and I have] skills around dealing with very deep conversations, where a lot of people don’t want to go.

Anne: Of course we’ve also had a lot of challenges in this political atmosphere of, How do you hear somebody with whom you profoundly disagree? We’ve seen that with members who may not be on speaking terms with family or friends. A lot of the work that we do is about—no matter what age somebody is—having respect for human worth, and seeing the other person as a full person.

Liz, you and I had a little rocky time when we weren’t really understanding each other.

Liz: It had to do with some organizational issues at the society. It was very political.

Anne: I thought, I’m going to assume that this is a misunderstanding. We just really need to go back and listen more carefully. What I really appreciated about Liz was that she not only listened to me but she also checked in with other Ethical Culture clergy. I really appreciated not only the deep listening, but also her checking to see, What’s the bigger story here? I think that comes back to being a religion of ethics. Friendships take work. And a lot of people aren’t willing to do that.

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The death doula: helping you prepare for the day you die

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What does it mean to have a good death? Leah Green meets with Aly Dickinson, an end-of-life doula. Aly helps clients to plan what they want to happen at the end of their lives, and she accompanies them as they transition from life to death. She helps Leah draw up a death plan, and takes her to a death cafe, where strangers discuss dying over tea and cake