‘I’m a Death Doula, and This Is the Most Common Regret I Hear From People Nearing End of Life’

By Jessica Estrada

Death is inevitable but reaching the end of our lives without any regrets is something we have some control over. The key is making the necessary shifts now so that when our time is up, we can go knowing we made the best of it. Learning the top regrets people have when they’re dying can help us understand what specific changes we should make. To help with this, we turned to Maryanne O’Hara, an end-of-life doula and author of Little Matches: A Memoir of Finding Light in the Dark.

In case you’re not familiar, an end-of-life doula, also referred to as a death doula, provides emotional, spiritual, practical, and physical (though not medical) support for people living with a terminal illness and their loved ones. Some things they can support with include sitting vigil, running errands, doing household chores, and helping with funeral arrangements. Death doulas essentially help people navigate the pain that comes with death and loss and are often the ones who are there when the dying are reflecting on their life.

Below, O’Hara shares the most-common regrets she hears from clients and the big, universal realization they have at the end.

According to O’Hara, the most-common regret she hears from people nearing the end of their life boils down to a single, overarching regret: “We always think we have more time,” she says.

In other words, people get caught up in the day-to-day things of life that they put off doing the things that are truly meaningful to them. “When you take the future for granted, it’s easy to lose sight of larger questions of meaning and purpose and respond to what’s demanding your attention in the moment,” O’Hara says.

For instance, O’Hara remembers a woman she worked with while volunteering at a hospital who received a terminal diagnosis. The woman’s biggest regret was not enjoying life’s little pleasures instead of focusing on daily stresses and chores and using those things as an excuse to not take better care of herself and spend more quality time with loved ones. “The woman said: ‘If I could go back and relive it all, knowing just how quickly it was going to pass, I would savor it all more. I would savor every delicious bit.’ She emphasized the word savor,” O’Hara says.

Another example O’Hara recalls is one client who regretted not spending time with his son. “There was one man, he hadn’t been very talkative, but I saw him after his team had given him some tough news, and he started asking me about my life, whether I was happy, what I did with my days,” O’Hara says. “Then he said: ‘You know that old Cat Stevens song about the dad who doesn’t have time for his son and then he grows up, and the son doesn’t have time for him?’ He was teary and trying not to be, and he pointed at himself as if to say that says it all.”

The most-common realization from people nearing the end of their life

Beyond the things they regret not doing, people nearing the end of their life also have one common realization: Love is all that truly matters, O’Hara says. People often wish they had realized this sooner and lived their life knowing it.

O’Hara recalls one client saying to her: “You have to tell the people you love that you love them. It can be hard, and you might say to yourself, ‘oh, she knows,’ but people need to hear it.” Similarly, she shares about a man nearing the end of his life who berated himself for not reconciling with his mother and telling her how much he loved her before she passed.

This sentiment of love being all that matters rings true for O’Hara in particular who lost her daughter. “We didn’t know it was going to be the last thing she ever said to me, but in the ICU, as I was trying so very hard to be strong for her, she said, ‘It’s okay to cry, mummy,’” O’Hara recalls. “She began crying, too, and she said, ‘I love you so much. I’ve never loved anyone as much as you.’ That’s the most cherished, painful memory of my life. Ask anyone who’s ever sat vigil beside a loved one in an ICU. It’s a heightened time of connectedness when everything else falls away, and for me, nothing ever mattered or will matter as much as the eternal love I have for my child and the love she had for me.”

Complete Article HERE!

Death literacy

— Why it’s important to talk about dying

By

When it comes to talking about death, we have no shortage of euphemisms. This is perhaps most famously illustrated in Monty Python’s dead parrot sketch from 1971. A pet shop worker insists to a customer that his new parrot is “not dead but resting, stunned, pining for the fjords, kipping on his back, tired and shagged out after a long squawk”. The customer responds: “It is an ex-parrot, deceased, gone to the choir invisible, is pushing up the daisies, demised, passed on, is no more, has ceased to be. It’s expired and gone to see its maker, is a bereft of life, late parrot that rests in peace.”

Talking openly about death – and dying – can be difficult. People who have cared for someone who is dying have been shown to feel they can engage more easily with this behaviour. Their experience helps them overcome the barriers that so many of us feel.

Being able to talk about death, dying and loss is an important aspect of what psychologists and palliative care specialists refer to as “death literacy”. This is the practical know-how about how to gain access to, understand and make informed choices about end-of-life and death care options. It directly shapes the decisions we make about the care we receive as well as our ability to care for others.

Man and woman sit on a park bench talking
People find it difficult to talk about death.

The 2021 UK census results show that there is a greater proportion of older people in our society than in previous decades. With an ageing population, of course, comes a higher number of deaths and greater pressure on the healthcare system.

Why we don’t talk about death

We conducted an online survey in 2019, where 381 adults in Northern Ireland were asked what prevents them talking more about death and dying.

We found that people feel ill-equipped for talking about death. When talking with someone else about that person’s situation, they worry they might say the wrong thing, or be unable to help that person navigate the emotions these discussions bring up. As one woman put it:

At times you want to avoid upsetting someone even though you know it would be good for them to talk

Conversely, when asked what would encourage them to talk more about death and dying, a young woman suggested:

When you compare the polarity, between birth and death, of how much it is acknowledged, it’s bizarre. Death is just as big a part of life … If we could all embrace it and bring a sense of community and camaraderie to it, it wouldn’t be as dark and frightening.

What is death literacy?

In 2021 we surveyed 8,077 UK adults. Our results showed that in their final days of life the top priorities for most people were to be free of pain and other symptoms, to be in the company of loved ones, and to maintain dignity and respect. Despite this, most reported not having spoken to anyone about their wishes.

We know that as people’s health declines, there is the risk that they may lose the capacity to make important decisions about their end-of-life and death care. So being able to speak out, in advance, is crucial.

There are several aspects to empowering people to be death literate. Talking about death is important, but people also need other skills and knowledge to provide practical support around end of life and death.

We have found that people in the UK often do not know how to navigate the health system at end-of-life or funeral options for themselves or others. Almost half of UK respondents we spoke to reported they did not know where to find information on how to plan for care at the end of life. And more than half of the people we surveyed didn’t know where to find bereavement support.

Man holds the hand of an older woman resting in bed
Care from the community is needed for people at the end of their lives.

Public health specialists, including UK charity Compassionate Communities, increasingly recognise that death, dying and loss are both central and inseparable from the social context. In other words, they do not happen in a vacuum. They are as public health sociologist Prof Allan Kellehear reminds us, “everyone’s responsibility”.

Anyone who is either approaching the end of their life, or caring for someone who is dying or grieving the loss of a loved one needs support. And the new public health approach to end-of-life care in the UK advocates that this support is best provided by healthcare providers working in tandem with death literate communities of family, friends and neighbours.

Researchers predict by 2040 most deaths will occur either at home or in care homes. Empowering people to advocate for their own end-of-life care as well as to care for those around them, has never been more important.

Complete Article HERE!

In life, my sister taught me how to love. In death, she made me want to fix the funeral industry

After Allison’s funeral, Jackie Bailey enrolled in a master of theology. Now she’s an interfaith minister, deathwalker, celebrant and funeral director – and the author of a new book she wrote for her sister

‘I wrote an entire book to say goodbye to my sister’, says Jackie Bailey (left), the author of The Eulogy, pictured here as a child with her sister Allison.

By Jackie Bailey

I hold his lower leg up so his daughter can gently wash underneath his knee. Then she does the same for me. We kneel on each side of her father’s body, which we brought home from the hospital where he died last night.

“You do his face,” I say and move back to the base of the bed where I wring out my cloth in the warm water. My colleague arrives with a cooling plate. His daughter and I finish washing him and drying him, then we dress him in his best suit and place him on a sheet over the plate. The plate means that his daughter can keep him at home until it’s time for the cremation.

We draw another sheet up to his chest. I light candles and place them at each corner of the bed as his daughter scatters rose petals around him. Tomorrow we will place him in a wicker casket. We will surround him with garlands and greenery and carry him out to the hearse. His daughter will accompany him to the crematorium where she will bear witness as her father’s body is placed in the fire.

It’s seven years since my sister Allison died. She lived for most of her life with various degenerative conditions as the result of brain cancer. My family gave her a beautiful send-off. Her adult nieces and nephews, whom she had babysat when little, brought her special mementoes, prepared a slideshow, decorated the casket.

I brought felt-tipped pens so we could write final messages on her eco-coffin. My daughter, then three years old, drew “potato people” on the side of the casket to keep Aunty Allison company on her final journey. Friends and family said prayers. I, my brother and our eldest sister gave the eulogy.

Jackie Bailey and Alison as kids.
‘When my sister died, I was not a consumer; I was a grieving puddle of emotions’

After Allison’s funeral I took a break from writing the manuscript which would eventually become my new novel The Eulogy. I needed some time away from our story. But instead of a holiday, I found myself enrolled in a masters of theology. Two years later I was an ordained interfaith minister, a trained deathwalker, a celebrant and independent funeral director.

Interfaith ministers offer pastoral care outside of religious institutions, creating spiritual services for the nonreligious. Many of my peers became chaplains in hospitals and prisons, social workers, university counsellors. But for me it was always about death. I wanted to give others what my sister’s funeral had given me: a clean wound, ready for healing.

But not everything about my sister’s funeral was perfect. I had chafed under the transactional gaze of the funeral directors. The inflated price of the eco-coffin outraged me, along with the attempts to upsell my grieving mother on urns, nameplates, casket decorations.

I later found out that the funeral company we had hired was not a local family firm as I had thought, but was actually owned by the multinational company InvoCare, which controls more than a third of the funeral market in Australia.

State and federal governments have held a number of inquiries, attempting to make the funeral industry more transparent, recognising that consumers are particularly vulnerable at these times of their lives.

But I want more than competition in the funeral industry. I want there to be no “industry”. When my sister died, I was not a consumer; I was a grieving puddle of emotions. I wanted a human I could trust to walk with me.

My book takes the form of a fictional guide for how to write a eulogy, as the protagonist prepares for her own sister’s funeral.

Australian author and funeral celebrant Jackie Bailey.
Australian author and funeral celebrant Jackie Bailey. She conducted her first funeral in 2017.

In reality I have never been able to find a good guide to eulogy writing. They all seem to assume you are telling the story of a prosperous businessman who has lived to a ripe old age. But what about people like my sister Allison, who had no career, no children, no value in this calculus, even though she was the defining person in my life, the person who taught me how to love?

In the end I wrote an entire book to say goodbye to my sister. But if you only have a time slot in a funeral service, here is my advice: it does not have to be perfect. It does not have to be long. And it is completely OK to cry, laugh or do both simultaneously.

In 2017 I conducted my first funeral. It was for a nonprofit funeral provider in my local area, a charity that believes someone’s death should not be an opportunity to take a company public.

I was nervous before the service began, but once it started, the anxiety just floated away. It was so clear that this event was not about me. I was there to give permission to people to feel whatever might arise: sadness, relief, despair, gladness. I was there to walk with them.

Complete Article HERE!

The psychedelic drug that could explain our belief in life after death

Scientists have discovered DMT, the Class A hallucinogenic, naturally occurs in the body, and may contain a clue to what happens when we die and why people see fairies

By Caroline Christie

DMT (Dimethyltryptamine) is the most powerful hallucinogenic drug around. The class A psychedelic is so potent that under the 1971 UN Convention on Psychotropic Substances its manufacture is strictly for scientific research and medical use and any international trade is very closely monitored. But it also naturally occurs in the human body. Now a Senior Psychologist at Greenwich University, Dr. David Luke, is trying to undercover a link between DMT and ‘near death experiences’ to explain elves, tunnels of light and centuries old folklore. On July 8th he’ll talk about his research at an event in conjunction with SciArt collaboration Art Necro at The Book Club in London.

Tell me about yourself

I am a psychologist at the University of Greenwich and I teach a course on the psychology on the exceptional human experience, which looks at extraordinary phenomenon of human beings. It’s all about mythical experiences, psychedelic experiences, personal paranormal experiences, mysticism, spiritual experiences, those sorts of things.

I do research on altered states of consciousness and exceptional human experiences, including psychedelics, medication, hypnosis as altered states and the experiences people have in the states such as out of body experiences, possession, telepathy, and clairvoyance – all your usual stuff.

How did you end up focusing on DMT?

I’m interested in DMT is because of my interest in psychedelics and the phenomenology of psychedelic use. DMT is of particular interest because it’s an extremely powerful psychedelic substance. But what’s more interesting than that, is that DMT naturally occurs in many plants, animals and in humans. It’s endogenous, meaning it’s made within the human body. So it’s more than just a natural plant psychedelic – it’s in us. That makes it extremely curious.

Wait – we naturally produce DMT? Why?

We don’t really know. It was first isolated as a chemical about 100 years ago in various plants. For example in ayahuasca, (a hallucinogenic brew from South America) the other chemicals that were isolated in a plant were named telepathine because users reported telepathic experiences. DMT was later found to be naturally occurring in the human body, found in large quantities in the cerebral spinal fluid. It’s thought to be produced in the lungs and in the eye. It’s also speculated, but not proven, that it’s made in the pineal gland.

What’s the pineal gland?

The pineal gland is a weird organ. During the daytime it produces serotonin, which we know keeps us happy and buoyant, and at night the serotonin gets converted into melatonin. It’s also thought that the gland produces DMT, which is converted from serotonin because they’re similar, it just an enzyme that converts it. The gland is part of the brain’s structure, situated just outside in the spinal fluid in a cavity. It’s really interesting. Why would we have an extremely strong psychedelic substance being produced in our brains? What is its ordinary function in humans? It’s not very well understood, largely because there’s not much done into it. The initial speculation thought that it was perhaps responsible for psychosis, in that people with schizophrenia may have an overproduction of DMT. There was some research conducted into it in the 1960s, but that didn’t get any consistent findings. So that idea was abandoned. Shortly after that, the research with humans stopped because psychedelics became illegal. It didn’t really stop people from taking them, but it did stop researchers from reaching the affect in humans.

Recently, research has begun again. A pioneering medical doctor in the 1990’s called Rick Strassman , started injecting people with DMT as part of a medical research project. About 50 to 60 participants were given high doses and they reported some extremely bizarre phenomena. Approximately half of the participants on a high dose reported being in other worlds and encountering sentient entities, i.e. beings of an intelligent nature which appeared to be other than themselves. The experience was so powerful that participants were convinced of the reality of experience with these other beings. It poses some very interesting questions.

What do these beings look like?

The beings themselves took on various forms. Sometimes they took on the form of little elves or imps or dwarves, sometimes they’re omniscient deities, other times they’re angelic beings. But they’re specifically not humans. Rick Strassman also speculated that the DMT experience had a lot of similarities with what we know about the near death experience.

How is being on DMT similar to having a near death experience?

The near death experience is a type of experience syndrome, whereby people perceive themselves to be near death or in danger of dying. Typical experiences include the sensation of leaving the body, entering into a tunnel of light and flashbacks of their lives. People typically meet some kind of being, sometimes a deceased relative or a powerful other, like an angelic being. The being will tell them it’s not their time to die and that they should return. Then the person who’s having the experience will return back to their body. Sometimes it coincides with them being resuscitated if they are having a genuine near death experience, like a cardiac arrest.

Research has suggested that there is an overlap between that experience and the experience people have when on DMT. In that there’s often encounters with beings, out of body experience, life changing experience, which is often said of near death experiences. But there are dissimilarities as well.

Why are these experiences particular to DMT?

That’s a five and half million dollar question. It’s not well understood. Why do people have this reoccurring theme of apparently sentient entities? It could be that it’s a hallucinatory experience, and for some reason DMT triggers the sense of encountering another being. Or perhaps it’s a misfiring of the brain’s neural network that’s reasonable for those kinds of experiences ordinary.

But it’s curious that the experience occurs in the absence of any kind of objective sentient being in the presence of the person. The other thing is that people quite adamantly testify to the reality of the experience. They say it’s more real than this world. Although we can explain it as a neurochemical misfiring, people who have the experience typically feel dissatisfied with that explanation because it feels so real. But to say it’s a hallucination isn’t satisfactory either.

Hallucination is a bit of a waste basket term for odd experiences we don’t really understand or can’t explain. It’s just a label really.

What’s even more baffling is that people seemingly independently have similar types of encounters. They may not know about other people’s experiences of little people, elves, gnomes or dwarves.

We’ve found reports of them right back to the very first DMT experiments conducted by a psychiatrist in Hungary during the 1950’s. He first tested it on himself and then gave it to his colleague.They all reported the same thing.

My colleagues and I think these experiences aren’t culturally mediated. This is when people are primed to expect something i.e. elves and dwarves and so on, because they’ve heard about it. We think people have been having these experiences on DMT naively, ever since it was first isolated and taken by humans. There’s something about DMT itself which cultivates these experiences. We’re just not sure how or why.

So why do you think DMT is present in the human body?

Rick Strassman tried to use it as a way of explaining the near death experience. He suggested that what happens when you have a near death experience is that your brain releases its store of DMT into the brain and it’s this chemical release that gives the experience.

No one has done a particularly thorough job of mapping the classic near death experience to the classic DMT experience. People have attempted crude compassions but no one has looked at it closely. When you do there are some overlaps but there are a lot of differences.

Although the DMT experience broadly contains all the elements of a near death experience, near death experiences are not like DMT ones. You have the experience of being out of the body or a tunnel of light, like you have with DMT, but there are things we find in the DMT experience that we don’t find in the near death one, such as geometric patterns and alien and bizarre experiences, whereas near death ones are typically very earthly.

What’s more Interesting is if you look at the folklore in literature around 100 years ago. People documented verbal accounts of people who had experiences with pixies. Typically in the folklore literature there were most often associated with spirits of the dead, which has some alliances with the idea of DMT being related to near death experiences. How and why that is, that’s anyone’s guess really.

Are we close to finding any answers?

Scientifically it’s somewhat tricky. I’ve been researching in this area for about 10 or 15 years. DMT struck me as being extremely curious because there’s no other psychedelic we know of that naturally occurs in the human body. I mean the human neural system has endocannabinoids which are related to cannabis THC, but there’s a big difference between that and the presence of DMT.

What’s the role of DMT in the body and why do people have such extraordinary intense and bizarre experiences when they take it? Strassman’s theory is that the purpose of DMT is to help people transition from a living state to a post-death state, whatever that might be. That’s a quite ambitious speculation from a scientific perspective. Because you can’t really know what happens after death.

Strassman’s theory is that the purpose of DMT is to help people transition from a living state to a post-death state, whatever that might be.

Current mainstream scientific thinking is that the brain dies and consciousness ceases. New research and evidence is beginning to challenge that. If you’re looking at the near death experience research that’s going on, people are reporting having experiences of conciseness and conscious awareness even when there’s no apparent brain activity. When the heart stops beating for about 20-30 seconds, all brain activity that we can detect stops because the brain is starved of oxygen.

In theatre operations when people have had their heart stopped and the blood drained from their brain have reported conscious experience throughout the whole procedure, sometimes lasting an hour or more, during which there is no brain activity that we can detect. This challenges the notion that you can have no consciousness experience without brain activity. Now we can’t be certain that they’re actually having a consciousness experience, because we can’t be sure it’s taking place at the same time as their stops working. They could just conflate the experience when they recover brain activity. Or it could be that there are some parts of the brain that we can’t detect, which still remain active. But there’s no evidence for that. So we’re in peculiar territory here, scientifically speaking.

Do you think we’ll ever be able to test for signs of consciousness after death?

We always like to think we’ll have a better understating in the future and science does tend to progress but it’s quite a tricky area. Experimentally it’s very difficult. We’re not in a position to experimentally put people into a death state and see what happens. Although we can take note of people who have surgical procedure and are put into a state of clinical death.

We don’t even know if DMT exists in the pineal glands. We have discovered it in the pineal glands of rats, which are anatomically similar to humans. So there is possibility but we have yet to discover what the pineal glands’ actually function is. It seems to be important as a neurological transmitter on certain, little understood, nerotransmitter sites in the brain. It also seems to have important indications in the immune system. But the question remains why we have an extremely potent psychedelic chemical floating around in the human body. Can this account for spontaneous mythical and spiritual experiences?

Complete Article HERE!

Santa Claus, the Tooth Fairy, and Death

— How to talk to pediatric patients without lying

By Rebecca Morse, PhD, MA

More than ever these days, we aren’t able to hide death from children. Whether we’re addressing their fear around school shootings, natural disasters, grief from family members lost during the COVID-19 pandemic, or concerns about their own illness, it’s impossible to shield kids from bearing witness to illness and death — nor should we. So, at the very least, as healthcare professionals we need to be able to talk to them about it in the most helpful way possible, with clarity, compassion, and honesty.

Often, when we are asked to work with grieving or terminally ill children, these patients come hand in hand with caretakers who have struggled to adequately explain what has or is going to happen. And that’s not surprising — it’s not easy to know the right way to talk to kids about death. In many cultures we are relearning how to talk to adults in a post-modern medically advanced world. We use euphemisms and dysphemisms: people “pass away” after a “long illness” or “kick the bucket.” We use softening and distancing language to compartmentalize death and reduce its universality and inevitability. But death is not a four-letter word, to be whispered in hushed tones. It has five letters — and when it comes to attempting to shelter our children from these harsh realities, are we preserving innocence or ignorance?

Numerous researchers have explored death and dying from a child’s perspective: Myra Bluebond-Langner, PhD, worked with children with leukemia; Maria Nagy, PhD, and Gerald Koocher, PhD, MA, studied how children grow to understand death, and others have attempted to map a child’s death comprehension onto social-emotional and cognitive developmental stages. And while this research is important and necessary, it isn’t particularly helpful if you are sitting across from a child who is looking to you for answers, and you are torn between using adult-focused language or blurring the truth behind analogies, such as comparing death to being asleep, cancer to being like a bad cold, or telling a grieving child that their loved one died because “God needed another angel.”

Most adults would undoubtedly agree that protecting children is one of those implicit rules of caretaking. Yet, as others have recently written, when we prevent children from experiencing the world around them as amateur scientists, we also prevent them from learning key coping skills that will build resiliency during their lifetime.

Children do need reassurance. William Worden, PhD, identified key questions that children — whether they are grieving or dying — need answers to:

  • Is it my fault?
  • Is it going to happen to you?
  • Is it going to happen to me?
  • Who will take care of me?

Synopsi

Trying to understand fault is natural. An infant in a highchair quickly learns the laws of cause and effect when they drop spoons or food on the floor and the family pet eats it, or mum and dad retrieve the objects only to find the objects quickly airborne again. And again, and again. Thus, it is only natural that when something scary or bad happens, kids want to understand what came before. Therefore, being clear about what you do know is important. As a child develops death comprehension (which often comes from experience and through social learning), they also begin to understand that death can happen to anyone. Here, reassurance could look like explaining what you do know — using language at their cognitive level, without using flowery language. I liken this to how you might answer a child who asks, “Where do babies come from?” You wouldn’t (I hope!) tell a 3-year-old about insemination or a 15-year-old that “the stork brings them.” Similarly, any relevant medical technicalities about the dead/dying loved one or child should also be age-specific. Are they receiving medicine? As a shot or a pill? Will the medicine give them a tummy ache? Will their hair fall out? The last question, “Who will take care of me?” is particularly crucial; a dying child needs reassurance they aren’t alone, and that the grown-ups are going to do what they can to make sure they are comfortable. A grieving child needs to know there is a plan in place to ensure they are safe, and that someone knows how to wash and mend their favorite stuffy or will help them with their homework.

Circling back to the title, some readers may have deep nostalgia and fond childhood memories of the mythical characters that bring presents or reward lost teeth; they may recall how they gradually came to understand what was real and what wasn’t, or some horrifying slumber-party where they learned the truth from a friend’s older sibling. But unlike candy, presents, and money left behind, when we don’t share what is happening with children about death and dying as it’s happening, they lose an opportunity to observe how the adults around them might use adaptive coping techniques. They lose the chance to process the information along the way in smaller “chunks.” When we deny kids the opportunity to learn, we betray their trust and model that it’s acceptable to lie when something hurts or is uncomfortable.

If a family member (or the child) has a terminal illness or has been in an accident, explain to the child that the person is sick/injured, and we are going to try to help them get better, but that it might not work. If a treatment stops working, tell them. If death is imminent, tell them. Give the child an opportunity to say goodbye whenever possible. For younger children who might be unable to go to the hospital, you could have them draw a picture or write/dictate a letter for the person. You are helping them adapt, not stealing their childhood. One of the things we need to emphasize when working with families is that even though the child may not have an adult conceptualization of what death is, they do recognize that something is happening and that the adults around them are hiding the truth from them. In the absence of concrete knowledge of what is going on, their imaginations work overtime as they attempt to fill the gap in their understanding. Therefore, children should be given developmentally appropriate honesty. An unknown something is always scarier than a known thing.

P.S. Dying is also a five-letter word, for those of you counting.

Complete Article HERE!

Enriching the dying experience

— End-of-life doulas help those who want to personalize their journey

By Nancy Burns-Fusaro

As a master gardener, Noreen Kepple is familiar with the natural cycle of life — with birth and growth, with dying and death. Her next chapter is a natural progression.

“Human beings are part of that cycle,” Kepple said one day last week as she spoke about her work as an end-of-life doula. “I think that’s what led me to end-of-life care.”

Kepple, 70, an early childhood educator by training, spoke recently at Stonington Free Library about her new calling — accompanied by Greta McGugan and her sister-in-law, Lavina Kepple — at a presentation titled “What is an End-of-Life Doula?”

This presentation, designed to discuss a doula’s role in the dying process and share ways doulas enrich the dying experience for patients and their families in non-medical ways, was well-attended and attracted many “brand-new people” to the library, noted Karla Upland, library assistant director.

The Kepples and McGugan, all Stonington residents, completed the certificate program at the University of Vermont’s Larner College of Medicine in 2020, where they studied to become end-of-life doulas. The term, Noreen Kepple said, is becoming more and more popular as members of the baby-boom generation come of age.

Add the pandemic to the mix, she said, and the thousands of people who were forced to die alone in hospitals while separated from family members, and there’s no wonder people have been pondering their own end days and those of their loved ones.

“Most people in this country die in hospitals,” Noreen said. “I think many more of us hope to die at home. … The pandemic underscored the need for people to not die alone. People are thinking about their own deaths and of how they’d like it to be. Dying at home can be a more rewarding process.”

Dying at home, she continued, is also a process that can be guided with help from a trained doula.

The word “doula” — which comes from the Greek word meaning “woman who serves” — is often associated with birthing, babies and new mothers. In the last few years, as more and more people seek to take control of their own dying experiences, it has become also associated with the dying process.

“Birth and death are so similar,” said McGugan, 56, the mother of three adult children and the grandmother of 10 who was present at the births of her grandchildren. “They’re really the same thing.”

An “end-of-life doula,” Noreen Kepple told the 30 people gathered at the library, can also be known as a “care doula,” a “death midwife,” an “end-of-life coach,” a “transition guide,” a “soul midwife” and “many, many others.”

Whatever the name, she said during a phone interview last week, an end-of-life doula is a non-medical companion who offers emotional and sometimes spiritual support to the dying and their families.

“A doula can have many kinds of service,” Noreen Kepple said. “They can help plan a vigil, help with paperwork and legacy projects.”

If someone is a good cook, for instance, Kepple went on, a doula might help organize recipes.

“Some doulas help record oral histories,” she said. “It’s really whatever the client wants.

“It’s important to be present, to be an active listener and to be open-minded.”

“Open minds and open hearts,” said McGugan. “We meet people where they are.”

“Back in the day,” McGugan said, people would have learned about dying at home and probably would have been present at the passing of a grandmother or elder relative, and would have been “holding the hands” of the person passing.

“We weren’t as afraid of death then,” she added. “Today we live in more of a death-denying culture.”

“Our culture has a hard time with death,” said Lavina Kepple, 73, a former schoolteacher who is training to be a hospice volunteer. “Taking the course really helps you look at your attitudes about death and dying.”

One of the books the three women studied while taking the online program through the University of Vermont, Noreen Kepple said, and one she recommends to people interested in learning more about the work of a doula is “Cultivating the Doula Heart: Essentials of Compassionate Care.”

The book was written by Francesca Arnoldy, the program director and course developer at UVM’s doula certificate program.

Arnoldy, who is also a bereavement researcher with the Vermont Conversation Lab, a hospice volunteer and author of “Map of Memory Lane,” said the program has grown exponentially since its inception in 2017.

As more and more people want an “intentional” dying experience, Arnoldy said during a telephone conversation from her home in Vermont one day last week, and choose to “personalize their end of life,” it makes sense that more and more people are enrolling in the eight-week online class, which prepares participants to “meet the growing demand for end-of-life support as people live longer.”

“I just trained nine more people to be instructors,” Arnoldy said of the program, which includes topics like “Dimensions of Grief and Loss,” “Non-Judgmental Support, Acceptance, and Unconditional Positive Regard,” and “Entering Sacred Space.” “And we are already full for this year.”

It’s an intensive course, Arnoldy said, with lots of reading, writing, modules, discussion boards and plenty of support.

“We do lots of sharing,” Arnoldy continued, noting that coursework requires roughly eight to 10 hours of studying a week. “It’s deeply personal … and there’s lots of feedback … lots of support.”

The course is appropriate for all those interested in exploring end-of-life possibilities, she added.

“Everyone has a seat at our table,” Arnoldy said, “although people with fresh grief might want to take time to heal before enrolling.”

“As a doula, I trust in my clients’ inherent wisdom and strength,” Lavina Kepple told the group gathered at the library last month as she read aloud from Arnoldy’s book. “A doula knows that each person is entitled to the completeness that is his or her journey.”

“It’s important to get people aware that doulas are out there,” said Noreen Kepple, who suggested that, in addition to the program at the University of Vermont, people interested in doula work look into an organization called The National End-of-Life Doula Alliance, a nonprofit that “welcomes and supports all end-of-life doulas, trainers, and interested parties, regardless of background or level of experience.”

The three women are already planning their next talk, a training session for the staff at Seniors Helping Seniors in Mystic.

Upland, who organized the sound and livestreaming technology for the Stonington Free Library presentation, has also made it available on the library’s YouTube channel via the library website.

The doula presentation at the library was well-received, Upland said in an email. “The audience was very engaged and attendees expressed interest in either employing an end-of-life doula for a family member, or becoming trained as doulas themselves.

“Many of the questions revolved around locating and engaging local end-of-life doulas for palliative care work,” she said.

Complete Article HERE!

What if hospice services weren’t just for the dying?

By Michael Ollove

Gloria Foster wasn’t ready for hospice, even though, with a prognosis of less than six months to live, she qualified for it. She was debilitated by diabetes and congestive heart failure, and was living with both a pacemaker and a device to help pump blood from her heart to the rest of her body. She also was tethered to an oxygen tank.

But Foster didn’t want to enter hospice, if, as is normally required by Medicare, she would have had to forgo treatments that might, against all odds, reverse the course of her disease.

“Why did I need hospice?” Foster, 73, asked in a phone interview recently from the home she shares with a grandson in Asbury Park, New Jersey. “Hospice is more or less when you’re ready to die. I just wanted to work my way back to doing as much as I could.”

But under a Medicare pilot program that began in 2016, Foster was able, for a time, to receive home care generally available only to hospice patients. Unlike hospice rules that normally govern Medicare, the public health plan for seniors, she wasn’t required to give up treatments for her terminal health conditions.

Still alive long beyond her prognosis, Foster credits the program, which ended for her in December 2019, with stopping her frequent hospitalizations, improving her mobility and greatly boosting her spirits.

“When it came to an end, I was very upset,” she said of the at-home services. “I cried, as a matter of fact.” She said she’s been hospitalized six times since then.

An independent evaluation of the five-year pilot — the Medicare Care Choices Model — recently provided its most robust data so far: The results found that participants were able to stay out of the hospital and live longer at home than a comparison group while also saving Medicare money.

The results were so encouraging that many who work in palliative and hospice care think the study’s conclusions will lead to some of the most important policy changes ever undertaken in the field — and not just for those in Medicare but also for patients with Medicaid, the state-federal health plan for low-income Americans, and for patients with private insurance as well.

Many who work in the field of hospice or palliative care hope the pilot project’s results will be the catalyst for bureaucratic changes that could deliver a raft of traditional hospice and palliative care services to millions more Americans struggling with debilitating chronic disease, whether imminently terminal or not.

The changes they would like to see include permanent removal of the requirement that patients give up curative treatments to access hospice-style benefits. Many also hope Medicare, Medicaid and private insurers will reexamine the requirement that home-based comprehensive palliative care services be provided only to those with a prognosis of six months or less to live. That denies many with serious chronic health conditions services they say would be beneficial and might also cost less, in part by keeping patients out of hospitals.

“This is a huge deal,” said Edo Banach, president of the National Hospital and Palliative Care Organization, which represents hospice and palliative care providers, and was among those who lobbied the U.S. Centers on Medicare and Medicaid Services, known as CMS, to undertake the pilot.

Hospice has evolved

When Congress created a Medicare hospice benefit in 1982, lawmakers and advocates mainly were focused on cancer. At that time, when treatments for cancer patients proved ineffective, the trajectory toward death often seemed clear. Hospice care was seen as an alternative to heroic but also, for patients, often agonizing measures to keep people alive at all costs.

Hospice switched the health care emphasis to symptom relief while enabling dying patients to use their remaining time in as fulfilling a way as possible by, for instance, spending time with family or simply sitting outside on a pleasant day.

But since 1982, cancer treatments have dramatically improved, extending lives, while higher percentages of Americans are dying of diseases other than cancer, particularly of illnesses related to dementia and respiratory illnesses such as chronic obstructive pulmonary disease, known as COPD.

And, as with many cancers today, the timetables of those diseases are less predictable.

“Six months for a patient with COPD isn’t realistic, because the trajectory of the disease isn’t the same as cancer,” said Susan Lloyd, CEO of Delaware Hospice, which participated in the pilot. “Even cancer is more chronic because of better treatments available. There needs to be a change in viewing the time frame to meet where patients actually are today.”

Many advocates and providers think other patients with serious but not necessarily terminal conditions also would benefit from a full array of palliative care services delivered in the home. The goals of both palliative and hospice care are to relieve symptoms and align medical care with the patient’s wishes and values. The main difference is the terminal prognosis in hospice.

CMS said it plans to issue a final report on the pilot early next year that will include data from the most recent report as well as qualitative results from interviews with participants, their families and providers.

Advocates hope that the latest data ultimately will result in changes that would enable many more Americans to receive full palliative care services at home, including those unwilling to give up on their disease treatments.

The pilot “opened up an avenue for so many more people to enter the program without having to admit, ‘My God, this is the end of my life,’” said Dr. Marianne Holler, chief medical officer at the VNA Health Group, which participated in the Medicare pilot and provides hospice services in Ohio and New Jersey. Foster was one of the group’s patients.

“Patients should not have to pick Column A or Column B at the end of their lives,” Holler said.

Holler and other providers said the pilot’s results demonstrate the cost-effectiveness of hospice care and argue for rules changes on eligibility and reimbursement.

Fewer hospitalizations

The pilot followed 4,574 participants from January 2016 through September 2020. They were entitled to services identical to — with some exceptions — those typically available with the Medicare hospice benefit. The project sought to answer whether participation would improve patients’ quality of life, increase election of the full hospice benefit and lower overall Medicare expenditures.

Among the findings:

— Compared with a control group not enrolled in the pilot, participants required less intensive medical interventions. For example, they had 26% fewer inpatient hospital admissions and 14% fewer outpatient emergency department visits and observation stays. They also spent 38% fewer days in an inpatient intensive care unit and 30% fewer days in other inpatient hospital units.

— A large majority of participants — 83% — made the transition to the traditional Medicare hospice benefit. Participants were nearly 30% more likely than nonparticipants to elect the Medicare hospice benefit before death.

— Participants were less likely to receive aggressive life-prolonging treatments in the last 30 days of life than their counterparts. They also were able to spend about six more days at home than those in the comparison group.

— As a result of all the findings above, Medicare expenditures for participants were 17% lower than for nonparticipants. The savings were even greater for those who lived less than six months after entering the pilot.

“When you give people more choice and greater freedom to make choices in their best interests, they make decisions that are better for them in terms of quality of care but better for the country in terms of costs,” Banach said. “The demo worked.”

The pilot waived a key requirement of Medicare’s hospice benefit: Patients weren’t forced to forgo treatments of their terminal conditions, such as chemotherapy, immunotherapy and radiation, intended to promote recovery or even a cure.

The pilot was open only to those with one of four diagnoses: cancer, chronic obstructive pulmonary disease, congestive heart failure or HIV/AIDS. To be eligible, people still needed to have received a prognosis of six months or less.

Once deemed eligible, patients could receive traditional hospice services in their homes, delivered by a multidisciplinary team of doctors, nurses, counselors, social workers and chaplains.

The services they received were similar to those provided under the Medicare hospice benefit: case management and care coordination, around-the-clock access to their hospice team, counseling services and symptom management.

The pilot did not cover some services that are part of the traditional Medicare hospice benefit, such as in-patient respite care, a care aide in the home and coverage for durable medical equipment, such as hospital beds.

Before she joined the pilot in 2017, Shirley Klionsky, 91, of Marlboro, New Jersey, recalled, “It was hard. Something was always going wrong, and I was always going to the hospital.”

That ended during the pilot, thanks to the hospice team’s weekly visits and monitoring of her advanced lung and heart disease. “It was the best thing I could have done,” she said.

Klionsky wouldn’t have entered the program if it had meant giving up the treatments for her disease. Hospice wasn’t for her.

“That would have meant dying,” she insisted, “and I said no to that.”

Complete Article HERE!