Category: Dying Wisely and Well

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‘There will be an afterwards’: how a mother prepared her sons for her death

When Kate Gross was dying, aged 36, she told her sons there would be life after her death. But how would they actually cope with losing her?

‘Afterwards, you will need to …’ Kate Gross with her twin sons Isaac, left, and Oscar

By Jean Gross
[W]hen my grandson Isaac was very small, his mother, Kate, would say, “I’ll miss you” when she travelled away for work. Later, when he was three, I remember him running after her in the park when he couldn’t quite keep up with her, crying: “Don’t miss me, Mummy.” To him, “to miss” meant “to leave”. “Don’t miss me, Mummy”, meant don’t leave me.

But, in the end, Kate did have to leave him, and his twin brother, Oscar. When the boys were five and she was 36, she died. It was Christmas Day 2014, minutes before the boys woke up to ask their dad, Billy, if it was time to open their stockings.

In the months before Christmas, once Kate had been told her cancer was terminal, she came up with a way in which we could all talk about a future without her. She called it Afterwards. “Afterwards,” she would say “you will need to …”, “Afterwards, Billy will …” Now, with some distance between us and that worst of Christmases, I want to write about Oscar and Isaac’s Afterwards – how they have managed, and whether Kate’s fears for them, or her best hopes, have come true.

It is a positive story. The boys are now sturdy, happy eight-year-olds. We have learned, with surprise and relief, how resilient they are, and how easily they have taken to the fact that their mum is not here – and yet is still here, in the fabric of her house, in the memories, in the ways in which we constantly tell them they resemble her.

Initially, the boys each reacted very differently to their loss. Oscar is stoic and factual by nature, with a passion for numbers. When we told the boys their mum was going to die, he asked how old people were when they got cancer. Billy said it was usually when you were old; their mum was unlucky.

“How old is Mum?” asked Oscar.

“Thirty-six,” said Billy.

Then, “And how old are you, Dad?”

Oscar was working it all out, with numbers as his guide, and Billy knew to tell him that he wasn’t likely to get cancer, too.

Of the two boys, Isaac has always been a little more worried about love and loss, always at a different point on the objects-facts v people-feelings scale. After Kate died, he initially had more hurt places than Oscar – manifest in tummyaches at school and a wish to stay in and “help” his kind teacher, or occasional oblique insights into sadness. I remember being in the car taking the boys to change from school clothes into smart new jumpers and shirts for Kate’s funeral. I told them that some people might cry at the funeral. “Why?” asked Isaac. It’s just something grownups do, I said. “Why?” persisted Isaac. I said they would be sad because they missed Mummy. There was a pause, then Isaac said: “I had a dream.” I asked what his dream was about. “I was on a train and Dad wasn’t and the train went off without him.”

But apart from these brief moments, there has been little sign of grief or worry. Oscar likes to tell me his bad news, like a cat bringing a mouse it has caught and tenderly laying it on your pillow. Once told, it becomes less important. But the bad news has never been about Kate, only grazed knees, fluffing a save in football, missing his computer time at school. Her death did, however, offend his sense of justice. “It’s not fair,” he said when we first told him she would die soon. “The other children in my class will have mummies.”

Kate and her mother, Jean Gross, with Isaac, left, and Oscar

Grieving, I think, asks that you live in the remembered past or a denuded future. Oscar and Isaac still pretty much live in the present. Nor have they a great capacity for introspection. Once I told them they had been unlucky to lose their mum. “Why?” asked Isaac. They didn’t understand; they were unable to examine their experiences, as distinct from simply living them.

There is little point in expecting young children to be sentimental. The summer after Kate died, we were on holiday in France, visiting a church; the boys saw candles and asked if they could light some. For Mummy, we said, and thought of her. But for them what mattered were the immediate sensory experiences – the physical act of striking a match, and the satisfying clunk as the offering money fell to the bottom of the collection box. Things don’t stand for things when you are small. They simply are.

I have often wondered why is it that some children cope with adversity, while others falter and fall. Research tells us that resilience is linked to social support – a sense of belonging to a community, and having at least one adult in your life who believes in you as a worthwhile person. And they have social supports in abundance – Billy, their dad, of course, and all the family and Kate and Billy’s friends. Just as important has been the boys’ own social circle. The children at their small, loving, Catholic school, and their parents, have closed around Oscar and Isaac and created a force field that keeps the Dark Side well away.

Science has been helpful to the boys, too; their dad is, after all, a scientist. They wanted, and got, proper explanations about cancer cells and death. A few months after Kate died, we heard them chatting in bed: “Everything dies eventually,” said Oscar.

“No one lives to infinity,” said Isaac.

Religion, doled out at school, has given the boys a language in which to talk about their loss. People often told them that their mum was in heaven, and they accepted this. In one bathtime discussion, Oscar told me: “There must be heaven.”

“Why?” I asked.

“Because if there wasn’t, where would God live?” he said triumphantly.

Even so, you have to be careful. One of Kate’s friends, whose wife died when his three girls were small, told us that one of them had said she wanted to be run over by a bus, “so I can go to heaven and be with Mummy”. As for, “God took your mummy because he wanted her to be with him in heaven,” I can’t think of anything more likely to make a child seriously annoyed with such a selfish higher power.

Angels are safer territory. At a birthday party, when the children were colouring in angels, Isaac said: “My mum’s an angel.” Oscar agreed: “Yes, she is.” But the angel for the top of the Christmas tree got broken last year and this year we had to get a star instead. I wondered if the boys were confused, what with these broken and unbroken angels. How do children make sense of all this? And how do they reconcile science and belief?

Becoming older and growing in understanding, the boys have talked recently with their dad about this. “It’s belief until it’s proved and then it’s science,” the boys told me.

“So what about angels,” I asked.

“They must be belief ’cos you can’t see them flying round, can you,” Isaac replied.

It is hard to know exactly what the boys do remember about Kate. We try to help by talking about her, whenever we can. Many people have told us how important it is to keep the person who has died in the conversation. A kind stranger, for example, wrote to us: “Both my parents died of cancer. I’m sorry for your loss. PLEASE tell stories about your Kate to your lovely grandsons. We stopped talking about our mother when she died – it was a black space that became hard to fill.”

Sometimes, I hold Kate up as an example for the boys to live up to. When they were complaining about having to keep going back over pieces of writing at school, to “improve” them, I told them that when their mum was writing a book, she had an editor who suggested changes to words and things to move around. I told them how hard she worked to make those changes. “And did she have a rubber?” asked Isaac, concerned.

We had a letter from a woman who lost her own mother as a child. She wrote: “My middle sister and myself had funny little memories of my mum and it truly wasn’t until I had my first child that I recall missing her.” Perhaps that will happen to Oscar and Isaac; I expect they will circle round the idea of Kate’s death and come to it at unexpected moments in unexpected ways. Maybe some later loss will take them back to how it felt in childhood. Or maybe, in a few years, the loss of a mother will simply give them a convenient hook on which to hang their inevitable non-specific teenage angst.

I hope they will be OK, long-term. But right now it is clear to me that they are not diminished by Kate’s absence, unlike us – my husband and I – who are. And if Kate could come back, just for a moment, I would tell her that she need not have been afraid. Oscar and Isaac are fine, just fine.

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Can a Chatbot Help You Prepare For Death?

They’re being designed to tee up end-of-life conversations, prep documents and provide spiritual counseling

This chatbot is designed to make it easier for people to deal with preparing for death.

By Randy Rieland

[W]elcome to the conversation no one wants to have.

It’s the talk about death—specifically one’s own death and the difficult decisions surrounding it. There’s the matter of organ donation, albeit that’s one of the easier choices for most people. Beyond that are tough questions about the conditions under which you would want to be kept alive—or not. Or who would be the person to make those decisions if you’re incapable of doing so.

Ideally, this is a discussion had with a family member or close friend, and at a time free of stress or urgency. But that rarely happens. It’s not just because it’s such an unpleasant and personal subject. There’s also often concern about how the other person might respond. Maybe they won’t be very empathetic, or even worse, maybe they’ll be judgmental.

But what if, at least initially, you didn’t have to talk to another human about this?  What if your “end-of-life” conversation was with a machine?

That’s an idea that a team at Northeastern University in Boston is exploring.  They’ve begun a trial in which they’re introducing terminally ill patients to chatbots—computer programs able to converse with humans.

Lead researcher Timothy Bickmore thinks that not only is this a way to get people to address the subject sooner, but it also could help make their last days more bearable.

“Patients tend to be referred to palliative care much too late,” he says. “Something like a third of patients moved to a hospice die within a week.”

Instead, says Bickmore, people with a short life expectancy could use technology with artificial intelligence to help prepare themselves logistically, emotionally, even spiritually for their deaths.

To test that theory, the research team is providing 364 patients expected to live less than a year with tablets loaded with a specially-designed chatbot.  The idea is that at least once a day the person would check in with the program.

It’s not a digital assistant like Alexa or Siri; there’s not a verbal exchange. Instead, after a voice greeting, the chatbot provides a choice of responses on the touchscreen. The interaction is meant to be closely scripted to keep the conversation focused and avoid the communication breakdowns that can occur with even the most intelligent machines. Plus, that protects the patient from revealing too much personal information.

That said, chats can cover a lot of ground. The chatbot can see if the person wants to talk about their symptoms or what he or she is doing to stay physically active. But it presents the option to expand the conversation beyond the person’s physical condition, too, perhaps to discuss “end of life” planning.  The program doesn’t actually generate documents, but it does enable family members or caregivers to see when a patient is ready to talk about it.

Spiritual counseling
There’s also an opportunity to talk about spirituality. That may seem an odd topic to get into with a machine, but Bickmore notes that an earlier pilot study found that just wasn’t the case.

“We designed it to be like an initial conversation a hospital chaplain might have with a patient,” he explains. “We were concerned that we might offend people with a spiritual conversation. But they seemed perfectly comfortable. There were even a few people who said they preferred having this conversation with a non-emotional character, as opposed to divulging these feelings to a human stranger.

“That was a little bit surprising,” he adds. “We actually felt we could have pushed it a little further. We discussed if we should make it possible for the chatbot to pray with them. We didn’t go there, but I think we could have.”

If a person chooses to converse with the chatbot about religion, the discussion can evolve over time since the machine remembers previous responses on the subject. “The program is very adaptive,” Bickmore says. “For instance, if it determines that you’re a spiritual humanist or a Catholic, then all subsequent conversation is tailored around that belief system.”

Included in that counseling role with the latest version of the program is an invitation to learn about meditation—both as a spiritual experience and a potential way to reduce anxiety and pain. If the patient is interested, the chatbot becomes a virtual meditation guide, all to appropriate background music and calming images.

Conversation practice
Haje Jan Kamps has also embraced the idea of using a chatbot to encourage people to deal with the logistics of dying. His impetus, however, was more personal.

A few years ago, when he and his wife lived in the U.K., his mother-in-law suffered a serious stroke in the U.S. She survived, but Haje says that during her treatment and recovery, he spent a lot of time talking to doctors and nurses about how unprepared many Americans seemed to be when it came to the details of death.

“I’d ask them ’Why don’t people plan for this stuff,” he recalls. “And they would look at me and say, ‘Sure, it would be great if they did, but they just don’t.’”

Kamps saw both a great need and an opportunity. He worked with another entrepreneur, Colin Liotta, to create an end-of-life planning chatbot. They named it Emily.

Emily is designed to have two purposes. The first is to actually help people fill out the appropriate paperwork—a formal organ donation statement, a health proxy document naming the person who will make your medical decisions if you can’t, and an “advance healthcare directive” outlining the extent of medical treatment you want to receive if you’re incapacitated. The documents are customized for the state where you live, although the tool currently provides coverage for fewer than 20 states.

The second goal is to encourage people to have the end-of-life discussion with another person.

“The idea is to have this conversation with a robot first,” Kamps says. “You learn the vocabulary. You learn how to structure a conversation about the end of life. And that means that it can become relatively straightforward to have that conversation again with a loved one.” 

For now, Kamps and Liotta see the audience for Emily—currently a free service—as one that might seem counterintuitive. They’re promoting it to people between 25 and 45 years old, a group that wouldn’t appear to be much interested in spending time thinking about death.

But Kamps points out that many in this demographic already are comfortable communicating with chatbots. It’s also an age range, he says, when people start making big life decisions—starting a family, buying a house.

And, to his way of thinking, it only makes sense to start thinking about a will and end-of-life planning at the same time—with the understanding that a person will probably want to consider updating the documents every so often.

“To me, these are core decisions,” he says. “Why wait?”

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End-of-life activists ponder how to die in a death-averse culture

“Why, you may ask, take on this unpleasant, frightening subject? Why stare into the sun?”

— Irvin D. Yalom, Staring at the Sun: Overcoming the Terror of Death

THE SACRED ART OF DYING: Third Messenger co-founders Said Osio, left, and Greg Lathrop promote community events such as the popular Death Cafe, a community forum that invites participants to engage in conversation about death and dying.

by Monroe Spivey

“Are you willing to pretend something for a minute?” asks Greg Lathrop, a local end-of-life activist. “So, let’s pretend this. March 27 will be your last day here. In this game, we know that you’re going to die March 27th. Now, how’s your life? See, it’s a simple perspective shift. Perspective is just a choice. You shift the perspective just that much, and it opens a door. We’re getting somewhere. Now it’s like, ‘I hate my job,’ or ‘I’m in debt up to my eyeballs.’ What would it look like, in these last three months, to live the best three months of your life? It gives us an opportunity. It’s more than a bucket list. What’s your life’s purpose — why are you even here?”

Lathrop, a registered nurse, holds a certification as a Sacred Passage doula — caring for people who are in the process of dying — and is co-founder of Asheville’s Third Messenger, a community of Asheville death-issues activists who have created a forum for conversations about death at the so-called Death Cafe. Lathrop is also part of a growing  national community that works in “the death trade” — people dedicated, he notes, to broaching the conversation of death and dying within a culture that prefers to speak about virtually any other subject.

Lathrop first began that conversation on the heels of his own significant loss. Synchronistically, the death of Lathrop’s wife and the passing of Third Messenger co-founder Said Osio’s daughter propelled the two men to join forces in end-of-life activism. To Asheville locals and tourists alike, Third Messenger’s work may be most visible in what has become a landmark Biltmore Avenue structure.

Ministered to for years by Earl Lee “Happy” Gray (before his passing in October 2016), the “Before I Die” wall poses passers-by one simple question: What have you left undone? Not surprisingly, responses range from the mundane to the profound, reflecting our culture’s divisive relationship with the end of life. Yet the wall serves as a catalyst, the beginning of what Third Messenger views as a critical and much-needed conversation. “We cultivate the sacred art of being with dying — we use art to engage the conversation,” says Lathrop.

It is precisely this lack of familiarity with death that engenders the paralyzing fear of the unknown and creates what author and end-of-life activist Stephen Jenkinson, who spoke at Asheville’s Masonic Temple Nov. 6, refers to as a “death-phobic culture.”

Dr. Aditi Seth-Brown, hospice and palliative care physician at CarePartners, agrees: “Many years ago, there were so many intergenerational families and communities, so death was something that young children were around and saw — life happened around death.” As a result of an unfortunate marriage of families living farther apart and a highly individualistic culture, Sethi-Brown now frequently encounters many individuals who have virtually no experience with the process she views as an inextricable part of life.

“People come to us, and oftentimes this is their very first experience with death, and there’s so much fear of the unknown,” says Sethi-Brown, who is also is a local musician, whose work includes playing for people transitioning and at Third Messenger events. “Sometimes, family members come to us and say, ‘We don’t want our loved one to know that they’re dying.’ We don’t practice it. There are some traditions around the world that actually have practices around death, meditations around death — just like if you’re birthing, you go to birth classes, read birth books, but [there’s] nothing to prepare you for death.”

CALLING FORTH THE BEYOND: Hospice and palliative care physician and musician Dr. Aditi Sethi-Brown often provides musical accompaniment for those transitioning.

Shining light upon the shadows

“I was 9. That’s the start of it, in my memory.” says Asheville resident Julie Loveless. Beginning in early childhood, Loveless found herself plagued by an inexplicable and inescapable fear of death. One night in particular, Loveless says, “We were at my grandmother’s house. My parents were there, my grandmother, my aunt, and it was time for me to go to bed. I was terrified, because I knew I wasn’t going to wake up the next morning. So I was coming up with all of these tactics to stay up. I had a fever, I had diarrhea, my stomach hurt, I was throwing up, I fell down the stairs — anything I could do to stay up and be the center of attention.” It was as though she needed to be seen in her terror, Loveless says, validated in her very existence. “I needed somebody to know I was alive.”

Loveless’ childhood fear of death is far from uncommon. Recent studies show that children as young as 5 express substantial “death anxiety.” The results of one such study indicated that a mature relationship to dying (understanding death as an inevitable biological event) correlated with a decreased fear of death.

Is it any surprise, when many children are now inoculated from the natural rhythms of life, that they fear, rather than revere, that great unknown? The reality is that “we don’t even have a language for dying,” says Lathrop.

Trish Rux, hospice and palliative care nurse and Sacred Passage doula, agrees. In contrast to her upbringing, she says, the majority of individuals she meets have rarely contemplated death. “I was raised without a death phobia,” Rux says. “I remember my father bringing me to a friend’s funeral when I was pretty young and my not really understanding about the casket, and his explaining it to me. He was just a very practical person. Just knowing that death is a part of life — it was an accepted thing.”

In stark contrast, Rux now regularly witnesses individuals who, in their final days, have scarcely given a thought to the inevitability of their own mortality. “Curiously, I’ve had people that in are in their late 80s, and they’ve not thought about their death. It’s incredible to me — they haven’t thought about what they want, who they want to see. It’s sad for me, and it’s pretty common.”

MINDFUL LIVING: “All of our time is running out,” says Julie Loveless. “It does make things less scary when you’re faced with what’s considered the scariest thing a human can be faced with.”

Dancing with death

Loveless was 30 when she first received a diagnosis of breast cancer and 37 when it returned with a vengeance. After having been in remission from the cancer for seven years, a persistent lymphedema sent her back to the oncologist for a standard biopsy. “I’ve never seen it happen that fast,” Loveless says. “He walked in, did the core needle biopsy and left. I got my clothes back on and am sitting down, and he immediately walked back in and said, ‘It looks like disease.’ The way he was talking about it, he made it clear it had metastasized. I don’t think he said the word, ever — it was just understood.”

Yet Loveless is no longer afraid to fall asleep. Now faced with the stark reality of her worst childhood fears, she finds herself liberated rather than imprisoned. “When I go back to the last time I remember having that really potent fear of death that was crippling, like pulling over to the side of the road and having to breathe into a paper bag, to now — it’s night and day. Before, when something would go wrong and I’d look into the mirror and see a new mark on my skin, I’d think ‘Oh, that might be skin cancer.’ Or, ‘I have a headache — I might have an aneurysm.’ To have those thoughts in my head all the time, to think that way and then to be like ‘Oh my God, I might have cancer — oh wait, I do have cancer.’ I have the worst thing you can have. Nothing else is scary.”

Freed from the fear of dying, Loveless now finds herself preoccupied with living. “[I] wake up in the morning and [think], ‘This may be my last day — how am I going to spend it?’ [Or], this might be my last minute — do I want to spend it brushing my teeth and sitting on the toilet and looking at Facebook? Or, do I want to go make a really yummy smoothie, or do I want to go outside and look at the leaves? So, if you’re thinking that way all the time, you have no idea that it’s even happening until the end of the day and you realize — ‘I didn’t waste my day today.’”

Lathrop questions whether we cheat ourselves of the chance for a more meaningful life if we spend our days running from the inevitability of death. His answer: “Death is my guru. It becomes a real teacher for how to live.” And Sethi-Brown agrees: “The reality is you don’t know when your time is. Don’t be afraid of having the conversation. The fear of the conversation, the discomfort around it — go there, explore that — and you’ll see, it will change your life.”

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Why you should make end-of-life care decisions now

By Kristen McConnell

[M]odern medicine has developed the God-like power to stabilize the vital signs that spiral out of control as a person approaches death, and to then keep that person alive despite their inability to breathe, eat or drink. It wields this power liberally.

But the American healthcare system never taught the public that preventing a natural death often results in a wholly unnatural life.

As an ICU nurse, I am haunted by memories of patients who were stabilized in intensive care so that their catastrophic injuries or diseases did not kill them, but who were left unable to communicate or do anything but receive medical care.

I think of a young woman whose family was so torn apart over whether to take her off life support after a hemorrhagic stroke left her comatose that by the time she died of a complication, weeks later, nobody came to be by her side.

When she was first admitted to the hospital, her family crowded her room. But when she didn’t get better, they drifted away. She stayed, her flesh peachy after weeks of tube feeding, though speckled with the tiny bruises of blood-thinning heparin shots.

She died of a perforated bowel leaking fecal matter into her abdomen and causing sepsis. Her family had declined emergency surgery over the telephone, giving permission for her to die. At the very end, there was only a nurse, dialing up morphine as the patient’s organs failed.

I can only imagine the immense suffering her family endured, and I know that every time they were asked for a decision regarding her care, they tried to make the right one.

But I wonder: If what was left of the girl in the hospital wasn’t enough to come say goodbye to, if she was too far gone to hold hands with as she drew her last breaths, why was she still there?

I also think of an elderly patient with a history of strokes and dementia who was brought to the emergency department after another large stroke. He was already completely immobile, dependent on care and unable to communicate. His breathing was inadequate and his heart went into a dangerous rhythm — dangerous if the goal is to stay alive. He was intubated and taken to the ICU.

The poor man was awake. He would occasionally squeeze a hand when asked to, but he never responded to questions. Because there was no fear of him pulling out his breathing tube, he was on minimal sedation, getting drugs only when he breathed rapidly or started “bugging out his eyes,” as one nurse put it. Aside from a list of diagnoses and meds, there was little information in his history, and no family contacts.

When asked directly by the ICU, the patient’s case manager and his general physician both refused to serve as his proxy and would not participate in a conversation about whether the patient would rather switch from life-sustaining measures to “comfort care,” which would have meant removing the plastic tube from his trachea and allowing him to die naturally, with supportive care and medicine to make him comfortable. So we kept him alive.

When I am face to face with a patient like this — someone who will never again be able to communicate, and who has been placed on the treadmill of continuous medical care — I feel the same type of shame as when I walk by a cold, crippled homeless person on the sidewalk. The wrongness is just as obvious.

When I stick a needle into his arm, or a catheter into his urethra, it feels as though I am kicking a homeless person. The incapacitated ill are profoundly disenfranchised, and the manipulation of their bodies is extraordinarily invasive and consequential.

It’s a moral crisis hiding in plain sight, yet the people involved claim to be mere cogs in the machine. When I asked an ICU attending physician why families aren’t given data and clear explanations of probable outcomes rather than best-case scenarios and “only time will tell” conversations, he said, “palliative care people can do that. In the ICU, we don’t really have time.” Another physician mentioned the “inertia of the system.”

It falls to the general public — the patients — to take the initiative in reforming the excesses of modern medical care.

You can determine your fate by completing an advance directive. This is a legal document in which you can explain what measures should be undertaken if you are unable to communicate; name a healthcare proxy who can communicate your wishes to medical providers; and lay out how you envision the end of your life.

Medicare began reimbursing physicians for advanced care planning in 2016. And many states have adopted POLST programs — Physician Orders for Life Sustaining Treatment — in which medical orders can be written in advance. Still, two-thirds of Americans do not have any type of advance directive in place.

These documents are critically important. If you don’t want to be kept alive on life support, you can indicate as much in your advance directive. If you want the longest life possible no matter what, you can affirm this wish. Either way, families and care providers should know. It will help move our medical system toward a more humane approach to end-of-life care.

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‘It’s all about making this better’

In the season of giving, hospice grants patients’ end-of-life wishes

From left, Deborah Holmes, Leslie White and Lisa Price work with patients of all ages at Seasons Hospice. Their job is to provide comfort and love to a person in his or her last days, weeks and even months.

By Isabel Hughes

[D]eborah Holmes adjusted her glasses, eyes watering as she glanced up at the ceiling of Seasons Hospice’s family room.

“I’m glad I didn’t wear mascara again today, though none of us [nurses] do much because we cry so often,” she said, smiling as her voice cracked. “I’ve almost given up wearing glasses they fog up so much too.”

Steadying her voice, Holmes laughed — a mixture of sadness, humor and joy.

Though the holiday season is often thought of as an especially important time for giving and making wishes come true, for Holmes and her fellow employees at Seasons Hospice, every day is an important time to grant wishes to their patients, the overwhelming majority of who are dying.

Unlike hospitals, which mainly focus on curative measures for patients — even those who are terminally ill — hospices are intended to provide comfort and love to a person in his or her last days, weeks and even months.

Hospice workers give the gift of dignified end-of-life care daily, holiday season or not, Holmes said, which she added is the most rewarding part of her job.

“Seeing those patients be free of those acute symptoms — to not be writhing in pain, to have that hospice success, to see them share laughs and hugs and things with their grandchildren and their own children — that’s the best,” she said.

“At night when I lay down — and it’s me and God, that’s who I deal with — knowing that that family member made it for their son to come home from the military, for that nephew to come in from out-of-state, for that patient to have their cat on their lap or for them to eat lunch without their oxygen because that’s what they want to do and they don’t care how low their stats drop, it’s those things, just making sure they have what they need, that’s my measure of success.”

The success varies from patient to patient, though, who range in age anywhere from 18 to 98.

“We do get very young patients; usually 18 years old and up, though we do get a lot of 30s, a lot of early 40s and 50s [and] a lot of 60s,” Holmes said. “Usually, cancer is the culprit, unfortunately, and those are especially hard because the [patients] generally have young families and their parents are still with us a lot of times. To have that parent experience the loss of their child at such an early age is absolutely devastating.”

As she continues, Holmes’ smile fades, sadness beginning to cloud her coffee-colored eyes.

“I’ll be honest,” she said. “In my 25 years of nursing, fortunately and unfortunately I’ve been involved in quite a number of situations where you do kind of go numb after a while. When I meet these family members, too, they don’t know what hospice is and I think it’s because there’s not a lot of talk in the community about hospice.

She added: “We’re not here to take anybody’s lives; we’re here to enhance the time that is left, so I do comedy with them. I may crack a little joke and I kind of develop a little joke with each and every family member or patient and that’s what I keep thinking about. It just brings a smile to my face because you know that was a connection that you made with those people.”

It’s the connections, too, that hospice employees make with one another that lighten the nurses’ daily burdens, as well as family, friends and pets.

In Bulldog country, the University of Georgia’s recent SEC championship and the team’s January trip to Pasadena, Calif., where they’ll challenge No. 2 seed Oklahoma in the Rose Bowl Game, also helps, Holmes said.

Lisa Price, one of the facility’s social workers, smiled, half-whispering ‘Go Dawgs’ as Holmes paused, mid-sentence.

“That’s the thing about it,” Price interjected. “We’re a big team and none of us could do our job without the others and the families, too. We have a good social and psych support here, and we’re a team.”

That team is part of what keeps Holmes coming back to work every morning, good days and bad. Her patients, too, make the job worth it.

And, at the end of the day, Holmes said she also knows she can turn on her radio, cued to a Pandora comedy station, and just laugh.

“I have a really good sense of humor; I love to laugh and I love to crack jokes,” she said. “I think it’s real important to keep a good sense of humor because even patients who are terminal, they still like to laugh and joke and kid, and we really enjoy that part, too. It’s not all crying; it can be, some situations that’s just where you’re at, but it’s all about making this better.”

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Death Without Duality: Three Both/Ands at the End of Life

by

[D]ying, like living, is not an either/or affair. It’s a both/and. Which is part of what makes it all so maddening for the floundering human who craves the comfort of dualities, of right and wrong, of fail-proof instructions.

I was reminded of this by some of the masters this month when I had the honor of hosting the End Well symposium in San Francisco. Twenty-eight speakers took the stage and talked about their experiences of almost dying, or treating the dying, or mourning someone who has died, or caring for the caregivers, or trying to shape policy or redesign systems or teach people about dying and/or do some of these simultaneously. There was some anger, and no small amount of sadness of course, but also a surprising amount of laughter. It turns out that we are funny right to the end.

Here are three both/and axioms that I heard echoed most often from people with a hugely wide range of professional backgrounds:

1) Reckoning with one’s life at the time of death is both the simplest thing in the world and the most complex.

Buddhist teacher and co-founder of the Zen Hospice Project, Frank Ostaseski, put it beautifully:

“At the end of life, it gets really simple: Am I loved? Did I love well?”

He’s right. Those questions are incredibly simple. As are the “four things” one can say — “Please forgive me,” “I forgive you,” “Thank you,” and “I love you” — at the time of death, popularized by Ira Byock. One of the huge, unique gifts of facing the end of life — whether your own or someone you love — is that the urgency for healing is undeniable.

But the dynamics that spark and rot and flow and flutter underneath those questions are anything but simple. They are as complex as human relationships as a whole, which is to say very fucking complex. The answer to the question of whether I am loved may seem obvious to an outsider, but if I’ve never felt loved in the right way by the one person I needed it most from, I may not be capable of a “yes.” Even at the time of death, especially at the time of death, we are not logical creatures.

And to answer whether we have loved well is perhaps an even more charged and challenged task. We carry our regrets and sense of relational inadequacy around for decades and then, in the end, are asked to lay them down and surrender to our own imperfection. A tall order. The tallest perhaps. Dr. B.J. Miller, former executive director of the Zen Hospice Project and a clinician, teaches:

“If there is any enemy at the end of life it is shame.”

If we can’t shed our shame, it makes it hard to go. The power in the dying process, from what I gather from these wise souls, is acknowledging the complexity underneath or behind the simplicity and still managing to grace one another with the forgiveness and recognition that we all so desperately crave. It is the kind of emotional courage that transcends death.

2) Our job, when caring for the dying, is to ease suffering, but also recognize that it is a source of meaning for many people.

B.J. also said, “I wouldn’t wish a lack of suffering on my worst enemy. There’s no way to learn.”

He knows a bit about it, having had three limbs amputated and survived near-lethal burns on much of his body after an accident in college. His own time in hell was incredible preparation for a lifetime of treating patients and talking with people about facing death.

Some of us have an inclination to romanticize death. It’s the peak of drama, no doubt — the final scene. But of course it is not all buzzer beater catharsis and mystical visitations. It is sometimes choking and seizing and terrible, ugly, unbearable pain. In a word, suffering.

Now the role of palliative care, but all health care really, is to ease suffering. This is true and important and so often lost in our current system, which too often feeds the wrong motivations in otherwise decent and smart humans. We have to redesign the system so that easing suffering is the heart of everything we do, or as designer Ivor Williams puts it, “Death involves everyone. Design accordingly.”

And yet, B.J. Miller would not be B.J. Miller without his suffering. None of would be any of us without our suffering. It is what erodes our delusions and softens our hubris and strengthens our capacity to resist duality and blame. It is the fires in which we are all forged.

So that, too, we must remember. Which doesn’t mean easing off on pain meds, but it does mean witnessing suffering as a sacred and necessary part of being human, even as we try to work with its ferocity and sit with the one being visited at this particular moment. Or as Dr. Lucy Kalanithi, a clinician, beautiful speaker, and widow to Paul Kalanithi, author of When Breath Becomes Air, put it:

“A gift we get to have in medicine is to be witnesses. It’s a front row seat to the human condition.”

3) When you die, you are the most alone you will ever be, and yet you cannot do it well without the gift of others.

Think about it: There is no journey more solitary, by definition, than that of dying — unless you Thelma-and-Louise it. Just as you have lived in your body alone all your life — experienced its holy and wholly specific alchemy of aches and pains and pleasures — you and only you leave that body at some unpredictable moment. (As I write this, I’m reminded how otherworldly pregnancy is, a moment when women actually do, in a sense, share their solitary experience for 10 strange months.)

In any case, accepting the solitude of it is probably key to surrendering to it. You have to go it alone, at least from a purely physical sense.

And yet, to die well is to die together. Or at least surrounded by people who care for you in your time of exquisite vulnerability. Hopefully these are people who have known you at your most robust, people that you have cared for, people you have eaten and drunk too much with and laughed beside and tickled and fought with and repaired again. Hopefully these are people who know your wishes and will fight like momma bears to see them through.

In one study, 66 percent of people said that the thing they feared most at the moment of death was pain. Understandable. And not particularly surprising. Do you know what topped that fear? The fear that they would be a burden to their family members — logistically, psychologically, financially.

Dr. Aditi Mallick says, “The things that scare us the most about death are at the core of what it means to be human.” Indeed, we fear being dependent on others, being inconvenient and messy and powerless, our whole lives long. And when we die, this fear becomes epic. Our power lies in making peace with it. If we live like we will one day die, then we can’t help but create relationships that are loving and strong and imperfect and they can weather even this, the final test of the human condition.

As B.J. puts it, “The end of life is a call to learn how to be loved. The hardest thing of all.”

Complete Article ↪HERE↩!

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Most people want to die at home, but many land in hospitals getting unwanted care

 

By Andrew MacPherson and Ravi B. Parikh

[W]here do you want to die? When asked, the vast majority of Americans answer with two words: “At home.”

Despite living in a country that delivers some of the best health care in the world, we often settle for end-of-life care that is inconsistent with our wishes and administered in settings that are unfamiliar, even dangerous. In California, for example, 70 percent of individuals surveyed said they wish to die at home, yet 68 percent do not.

Instead, many of us die in hospitals, subject to overmedication and infection, often after receiving treatment that we do not want. Doctors know this, which may explain why 72 percent of them die at home.

Using data from the Dartmouth Atlas — a source of information and analytics that organizes Medicare data by a variety of indicators linked to medical resource use — we recently ranked geographic areas based on markers of end-of-life care quality, including deaths in the hospital and number of physicians seen in the last year of life. People are accustomed to ranking areas of the country based on availability of high-quality arts, universities, restaurants, parks and recreation and health-care quality overall. But we can also rank areas based on how they treat us at an important moment of life: when it’s coming to an end.

It turns out not all areas are created equal. Critical questions abound. For example, why do 71 percent of those who die in Ogden, Utah, receive hospice care, while only 31 percent do in Manhattan? Why is the rate of deaths in intensive care units in Cedar Rapids, Iowa, almost four times that of Los Angeles? Why do only 12 percent of individuals in Sun City, Ariz., die in a hospital, while 30 percent do in McAllen, Texas?

Race and other demographics in a given area certainly matter. One systematic review of more than 20 studies showed that African American and Hispanic individuals utilize advance-care planning and hospice far less than whites. More research is needed to explore these differences and to close these gaps and demand high-quality, personalized care for people of all races.

But race and demographics don’t provide all the answers. For instance, Sarasota and St. Petersburg, Fla., are only 45 miles apart and have similar ethnic demographics. Yet we found that they score quite differently on several key quality metrics at the end of life.

A variety of factors probably contribute to our findings. Hospice, which for 35 years has provided team-based care, usually at home, to those nearing the end of life and remains enormously successful and popular, is under­utilized. Most people enroll in hospice fewer than 20 days before death, despite a Medicare benefit that allows patients to stay for up to six months. Hospice enrollment has been shown to be highly dependent on the type of doctor that you see. In fact, one study among cancer patients with poor prognoses showed that physician characteristics (specialty, experience with practicing in an inpatient setting, experience at hospitals, etc.) mattered much more than patient characteristics (age, gender, race, etc.) in determining whether patients enrolled in hospice. For example, oncologists and doctors practicing at nonprofit hospitals were far more likely than other doctors to recommend hospice.

Also, physicians in a given geographic area are likely to have similar approaches to health care. They may collectively differ from physicians in another area in their familiarity and comfort with offering hospice care to a patient. This may explain why hospice enrollment significantly varies among geographic regions.

Palliative care, which focuses on alleviation of suffering, is often misunderstood by doctors as giving up. Health professionals’ lack of longitudinal, substantive training in end-of-life care only compounds the problem.

Perhaps most important, fewer than half of Americans have had a conversation about their end-of-life wishes — a process known as advance care planning — and only one-third have expressed those wishes in writing for a health-care provider to follow when they become seriously ill. If people do not have a clear sense of their end-of-life wishes, it is easy to imagine that they may be swayed by a physician’s recommendation.

The private sector has led the way in addressing the under­utilization of hospice and improving end-of-life care. For instance, health insurers such as Aetna have devised programs integrating nurse-led case management services for seriously ill individuals, reducing costly and undesired emergency room visits while increasing appropriate hospice referrals. And start-ups including Aspire Health are working with communities to provide palliative care in people’s homes while devising algorithms to help payers and providers identify individuals who might benefit from palliative and hospice care.

Congress also is considering bipartisan solutions consistent with best practices. Congressional leaders have recently introduced several pieces of legislation that would test new models of care for those facing advanced illness, support health professionals in training for end-of-life care and ensure that barriers are removed for consumers to access care.

And Medicare, via its Innovation Center, has led the way in testing promising care models to support those at the end of life, including the Medicare Care Choices Model, which allows individuals to receive hospice care alongside traditional, curative treatment.

But the secret sauce may be a shift in culture. We will not improve the death experience until we demand that our public- and private-sector leaders act and that our local health professionals encourage person-centered end-of-life care.

As with any social change, progress will be driven by a growing awareness and a desire for justice among families and patients. There are good and bad places to die in America. However, to ensure a better death for all, we must confront not just geographic disparities but also our resistance to thinking about death.

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