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How to die the way you want

Tackling the tough questions over a cup of tea or coffee

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We’re all dying, every one of us.

But we learn early on that despite the fact our lives are universally finite, most people don’t want to talk about it.

We’ll talk sex, we’ll talk drugs, we’ll even talk money—but not death.

That could be changing with the proliferation of so-called Death Cafes, informal get-togethers in cities across America, Europe and Asia, where people eat a little something, drink some coffee maybe and talk about, well, the inevitable.

The mission is to revamp typically depressing and urgent end-of-life discussions to more leisurely “Everything-I-Wanted-To-Know-About-Death-But-Was-Afraid-To-Ask.”

The conversation ranges, and depends on the group of people who’ve gathered: anything from how much a funeral costs to the details of a “green” funeral (think: corpse as compost) to tips on how to talk to your family members about your own funeral.

There’s a range of people who attend, too, from someone who had a death in the family and wants to be better prepared next time, to health care providers who want a different perspective on dealing with death. They range in age from 20-somethings to 90-somethings.

The object: to turn death from a feared end to something that is part of life.

“Death Cafés change the way you live in the most profound and wonderful way,” says Kim Mooney, 67, who runs monthly meetings in Longmont, Colorado.

Mooney even held a few events in a mortuary. “I like to say it’s the only time you will walk in and walk out of one, so you might as well take advantage of it.”

Death café hosts tend to have a sense of humor.

Death on twitter

If you want to confirm the popularity of the death positive movement, just go on social media. There’s The Death Café Facebook group, which lists times and dates of meeting and has more than 50,000 likes and followers. 

Or you could follow Death Café on Twitter. 

Advocates say the meetings allow people a low-pressure way to express fears about the Great Unknown; to chat about the way other cultures handle death; and to share practical information, such as learning the nuts and bolts of filling out end-of-life forms.

Talking with strangers, hosts say, is often an easier way to broach the topic before launching a conversation about death with loved ones.

Lizzy Miles is a hospice social worker who hosted America’s first café in 2012 in Westerville, Ohio. She baked cookies in the shape of tombstones with grey icing and “Death Café” where the epitaph normally goes.

She is one of more than a 100 Death Café hosts in this country. She’s still hosting—and still making treats—for nearly a dozen people who show up each month.

Yes, these are the cookies Lizzy makes for her Death Café guests in Ohio.

“No one ever comes to a Death Café already uncomfortable talking about death,” she says. “If you are, you’re not going to come. We have a lot of sandwich generation people, who are taking care of their parents.”

Miles is so committed she even traveled to a Death Café in Hong Kong—“on my own dime!”—to see what it was like. 

“It was amazing, people were speaking English and Mandarin and Cantonese,” she says. “And I thought ‘Oh my gosh, all these different languages. This is pretty cool but almost exactly the same.’” 

Dos and don’ts

Anyone can be a host, but there are guidelines. The Death Café website has a set of guidelines and Miles herself was a co-author on an article that included a list of dos and don’ts in the Omega Journal of Death and Dying: 

Do: Allow a space for folks to share their ideas respectfully and openly. 

Do: Offer the opportunity for everyone to speak but allow those who want to remain silent to do so. 

Don’t: Charge an admission fee. 

Don’t: Sell death-related products. 

Don’t: Turn the group into grief support. 

Miles and others believe that confronting our mortality will prompt us to the make the sorts of life changes that some folks do only when confronted with a fatal disease. Why wait? 

Shellie Balogh, a 61-year-old hospice nurse attended one of Miles’ cafés in Ohio.

 “It wasn’t what I expected; it was more upbeat,” she says. “It’s a fun thing to do if I have a free Saturday. You go and meet people you may never see again and just have this conversation, opening up this forbidden area of discussion.” 

A midwife for dying

Suzanne O’Brien hosts a New York City group that meets at a public library on the Upper West side. She’s a nurse turned death doula.

Death doulas—part of this burgeoning “death-positive” movement—provide the same sort of bedside care, comfort and companionship that birth doulas offer to pregnant women but at the other end of the life cycle. 

O’Brien said monthly conversations tend to fit into five buckets, sometimes all five covered in one 90-minute session: 

The physical: How do I make sure I’m comfortable during my dying hours. What do I want to happen to my body? 

The financial: What forms do I need to fill out? Or how much money do I want to spend on a funeral versus, say, end-of-life care? 

The emotional: How do we deal with potential regrets or forgiveness? 

The mental: Reasoning and acceptance  

The spiritual: How do beliefs about death inform the way we live.  

One woman wanted to know how to donate her body to a medical school anatomy class. She also wanted to make sure her family would not be given the leftovers when the students are done picking her apart, something she had heard can happen. 

She told the group: “I’d rather just be flushed.” 

Banishing the secrecy

The idea of a group of a random community members chatting about death over refreshments was the brainchild of Swiss sociologist Bernard Crettaz. He launched a “Café Mortel” in 2004 in the lakeside town of Neuchâtel, Switzerland. A dozen mortal members attended. 

The point, as he once told a reporter for the Independent, a British newspaper, was to remove death talk from its “tyrannical secrecy.” 

The first cafe outside of Switzerland was held by John Underwood,  who hosted in his London basement in 2011. He’s given credit for helping the movement go global; he died last year, at the age of 44, from undiagnosed leukemia.

Today, there are death-with-food meetings in about 55 countries—including the U.K., Italy, Hong Kong, Finland, the Netherlands and New Zealand.

Becoming a regular

Those who are regulars say that while the subject matter is death, the meetings are not sad. Hosts emphasize that they are not grief support groups, more death-curious groups.

Jane Geller, a retired schoolteacher in New York City attends the Upper West Side meeting nearly every month.

“It’s a misnomer to think it’s depressing,” she said. “Death Cafés are really about life.” 

Shatzi Weisberger, an 88-year-old retired nurse from New York City is a regular, too. 

 “I was always especially interested in how we come into this world and how we leave it. When I got into my eighties, I got personally interested for my own edification.” 

Last fall, she hosted her own “FUN-eral” (pronounced Funn-eral) in the common room of her apartment building. More than 100 attendees came to the event. It sounded like a macrabe-themed birthday but she said it was a death, not a birth, party. And a way to attend her own funeral. 

She said she has planned her own green burial. “I’m going to be wrapped in a shroud and buried in the woods upstate and my body will deteriorate and something will grow.  I don’t know if it will be grass or flowers or a tree so I feel my dying is bringing life into the world. That’s not depressing at all.”

Complete Article ↪HERE↩!

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What’s Wrong with Dying?

The answer might seem simple, but in the hands of Lesley Hazleton, the question takes us on a surprisingly humorous and thought-provoking journey into what it would actually mean to live forever. And whether we’d truly want to. A frequent TED.com speaker and ‘Accidental Theologist,’ Hazleton uses wit and wisdom to challenge our ideas not only about death, but about what it is to live well.

Lesley Hazleton has traced the roots of conflict in several books, including compelling ‘flesh-and-blood’ biographies of Muhammad and Mary, and casts “an agnostic eye on politics, religion, and existence” on her blog, AccidentalTheologist.com. Her newest book, Agnostic: A Spirited Manifesto, celebrates the agnostic stance as “rising above the flat two-dimensional line of belief/unbelief, creating new possibilities for how we think about being in the world.” In it, she explores what we mean by the search for meaning, invokes the humbling perspective of infinity and reconsiders what we talk about when we talk about soul.

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Research examines living well while dying

by University of British Columbia

A UBC professor has determined that people diagnosed with terminal cancer—who have hope, positivity and family support—are able to live well during the advanced stage of the disease.

Carole Robinson, professor emeritus with UBC Okanagan School of Nursing, recently published a paper explaining the process of living well with an awareness of dying.

“While there is a growing body of research focused on select aspects of people’s experiences with advanced cancer, there is little research examining the process of living with advanced cancer across the trajectory towards death,” says Robinson. “Even patients whose prognosis is limited are living longer and want to live well, making this issue a global concern.”

Robinson notes that globally there are 14.1 million new cancer cases diagnosed each year, 8.2 million cancer deaths, and 32.6 million people living with cancer. Historically, researchers have studied the concept of living well with a , but not specifically cancer. Robinson says those studies convey the idea it may be possible to live well with advanced cancer, but little is known about how it is done or how to support it.

The study analyzed 22 interviews with Spanish residents involved in previous research that explored their experience of living with advanced cancer. The researchers found the engaged in a five-phase iterative process: struggling, accepting, living with advanced cancer, sharing the experience and reconstructing life. This process revolved around participants’ awareness of dying, which differed from people living with chronic illness and was a unique aspect of this newresearch.

Each phase was revisited, and as the disease advanced living well got more challenging. Participants talked about strategies for living with advanced cancer, including making life adjustments, maintaining a positive attitude, normalizing and hoping.

Over time, participants realized struggling against the disease created additional difficulties. In fact, they understood it was counterproductive so they made a conscious choice to let go of struggling. Some referred to it as being the only choice they could make while living with the uncertainty of advanced cancer. This enabled accepting their life circumstances at some level and learning to live alongside their illness.

Robinson says that the importance of family love and support cannot be underestimated. For all the participants, she adds, awareness of dying led them to focus on living well. Sharing the experience with loved ones softened suffering remarkably. They were aware they did not have time to lose.

“Although it might happen in moments, participants were able to put behind them and live life rather than living their illness,” she notes. “Living in the moment enabled deep appreciation of everyday things such as the beauty of a flower garden.”

Robinson says the key takeaways to living well encompass a balance between dependence and independence, being able to see the positive and maintaining hope even in the end stages of the disease.

“The participants in this study worked hard to live a life rather than live an illness,” says Robinson. “The implication here is to support the positive. It has been found in previous research that hoping for a cure when is advanced is not lack of awareness—it can be a choice in focusing simply on positive possibilities.”

Complete Article ↪HERE↩!

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A Dying Young Woman Reminds Us How to Live

THE UNWINDING OF THE MIRACLE
A Memoir of Life, Death, and Everything That Comes After
By Julie Yip-Williams

Julie Yip-Williams

By Lori Gottlieb

When we meet Julie Yip-Williams at the beginning of “The Unwinding of the Miracle,” her eloquent, gutting and at times disarmingly funny memoir, she has already died, having succumbed to colon cancer in March 2018 at the age of 42, leaving behind her husband and two young daughters. And so she joins the recent spate of debuts from dead authors, including Paul Kalanithi and Nina Riggs, who also documented their early demises. We might be tempted to assume that these books were written mostly for the writers themselves, as a way to make sense of a frightening diagnosis and uncertain future; or for their families, as a legacy of sorts, in order to be known more fully while alive and kept in mind once they were gone.

By dint of being published, though, they were also written for us — strangers looking in from the outside. From our seemingly safe vantage point, we’re granted the privilege of witnessing a life-altering experience while knowing that we have the luxury of time. We can set the book down and mindlessly scroll through Twitter, defer our dreams for another year or worry about repairing a rift later, because our paths are different.

Except that’s not entirely true. Life has a 100 percent mortality rate; each of us will die, and most of us have no idea when. Therefore, Yip-Williams tells us, she has set out to write an “exhortation” to us in our complacency: “Live while you’re living, friends.”

Before her diagnosis in 2013, Yip-Williams had done more than her share of living. It was, indeed, something of a miracle that she was alive at age 37 when she traveled to a family wedding and ended up in the hospital where she received her cancer diagnosis. Born poor and blind to Chinese parents in postwar Vietnam, she was sentenced to death by her paternal grandmother, who believed that her disability would bring shame to the family and render her an unmarriageable burden. But when her parents brought her to an herbalist and asked him to euthanize her, he refused.

The family would eventually survive a dangerous escape on a sinking boat to Hong Kong, and less than a year later make their way to the United States, where at 4 years old, Yip-Williams had a surgery that granted her some vision, if not enough to drive or read a menu without a magnifying glass.

She would go on to defy her family’s expectations, eventually graduating from Harvard Law School, traveling the world solo and working at a prestigious law firm where she meets Josh, the love of her life. She becomes a mother and, soon after, a cancer patient, and soon after that, because of this unfortunate circumstance, a magnificent writer.

During the five years from her diagnosis to her death, we enter her world in the most intimate way as she cycles through Elisabeth Kübler-Ross’s famous stages of grieving: denial, anger, bargaining, depression and acceptance. Describing the ways in which terminally ill patients cope with their own deaths, these stages weren’t meant to delineate a neat sequential progression but rather the various emotional states a dying person might visit, leave and visit again.

Yip-Williams toggles between optimism and despair, between believing she’ll defy the statistics as she had so many times in her life — “odds are not prophecy” — and trying to persuade her husband to confront their harrowing reality. She makes bargains with God, just as she did as a young girl when, in exchange for her poor vision, she asked for a soul mate one day. (“God accepted my deal!”) She posts pictures of contented normalcy on Facebook — of meals cooked, a car purchased — but rages at her husband, healthy people, the universe and, silently, at the moms at a birthday party who ask how she’s doing. “Oh, fine. Just hanging in there,” she replies, while wanting to scream: “I didn’t deserve this! My children didn’t deserve this!” She frets about the “Slutty Second Wife” her husband will one day marry and the pain her daughters will experience in her absence. And, near the end, she oscillates between being game to try every possible treatment and accepting that nothing will keep her alive.

“Paradoxes abound in life,” Yip-Williams writes in a heart-rending letter to her daughters; she asks us to confront these paradoxes with her head-on. One of the paradoxes of this book is that Yip-Williams writes with such vibrancy and electricity even as she is dying. She moves seamlessly from an incisive description of her mother as “the type of woman who sucks blame and guilt into herself through a giant straw,” to the gallows humor of “Nothing says ‘commitment to living’ quite like taking out a mortgage,” to the keen observation “Health is wasted on the healthy, and life is wasted on the living.” Unlike the woman in her support group who, after being given a terminal prognosis, defiantly declares, “Dying is not an option,” Yip-Williams prepares meticulously for her death while paying close attention to the life she will one day miss: “the simple ritual of loading and unloading the dishwasher. … making Costco runs. … watching TV with Josh. … taking my kids to school.”

This memoir is so many things — a triumphant tale of a blind immigrant, a remarkable philosophical treatise and a call to arms to pay attention to the limited time we have on this earth. But at its core, it’s an exquisitely moving portrait of the daily stuff of life: family secrets and family ties, marriage and its limitlessness and limitations, wild and unbounded parental love and, ultimately, the graceful recognition of what we can’t — and can — control.

“We control the effort we have put into living,” Yip-Williams writes, and the effort she has put into it is palpable. Of all the reasons we’re drawn to these memoirs, perhaps we read them most for this: They remind us to put in our own effort. It would be nearly impossible to read this book and not take her exhortation seriously.

Complete Article ↪HERE↩!

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The Case for Advanced Directives

By Aldis Petriceks

Five minutes. That is all I had to make my case: to convince this 80-year-old man to fill out an advanced care directive. John, as I’ll call him, had served in the military for over thirty years, risking life and limb for his country. Many times he came close to death, suffering fractures and blast injuries and witnessing the raw, unfiltered trials of war. He retired as soon as his pension kicked in, and hadn’t worked in over 25 years.

Neither had he paid much attention to his health. Once, he had a loving wife and two children, and was concerned with his body—how it would hold up to the wear and tear of aging. But his wife had passed away ten years earlier, and his children were now estranged. John lived alone in his house, lonely and unemployed. And so his hypertension, coronary artery disease, and chronic kidney disease no longer delivered the same existential fright. All John wanted to do was sit in his home, away from others. And that is what he did.

Then, two months prior to our meeting, he was hospitalized with pneumonia. Weeks later, he was hospitalized again. And again. And a fourth time in two months, despite a week-long stay involving critical care and mechanical ventilation just days beforehand. He was running a fever, and his breath was labored. He lost his appetite and control of his bowels. The combination left John nutritionally shortchanged, and his medical team was forced to place a feeding tube directly into John’s stomach, passing straight through his abdominal wall.

Yet for all this treatment, John’s prognosis wasn’t looking any brighter. Lab tests returned with clear signs of malnutrition and vitamin deficiencies; they also suggested possible liver disease. And while John passed his cognitive exams, he was diagnosed with mild depression. But all he could tell the medical staff was how he had “been through so much worse”—and how he just wanted to go home, get away from the beeping and humming hospital, and be done with it.

Three minutes. All these facts and histories left me with one general, almost blanketed feeling: John was not going to live much longer. If John really wanted to go home, if there was really some way in which we could do right by him, we had to act now.

I was sitting face-to-face with the man. It was as if his tired, tumultuous medical history—like some solemn but unexpected musical score—was playing before me with a surprising timbre. One might have thought that this military man would want to fight, would need to fight—but the opposite was true. He was just plain tired. Tired of the hospital, tired of the doctors, tired of the medications, tired of the tubes in various orifices, natural and artificial. John just wanted to go home.

Ninety seconds. I had spent most of the conversation probing John’s mind, trying to find what mattered to him. I asked him what his understanding of his illness was. I asked him what concerns he had. I tried to uncover his goals, his priorities. Then: which outcomes were unacceptable? Which compromises seemed favorable? And ultimately, what did a good day look like?

Forty-five seconds. John had answered all my questions. Yet I realized that, for all my probing, I was still beating around the bush. John was probably not going to live much longer; and if we didn’t take initiative, he might live the rest of his life bouncing in and out of hospitals—a prospect he abhorred.

But how could I ensure that John wouldn’t return to the hospital for treatment he didn’t want? Thirty seconds. The answer was simple, stupefying: an advanced directive. With John’s advanced age and complex medical history, he needed something to explicitly convey all that he had just told me. His concerns, his goals, what was unacceptable, what could be compromised: if these were written down, John would stand a markedly better shot of living—and yes, dying—on his own terms. So I spent the last half-minute of our conversation describing the advanced directive form, highlighting its purpose and importance. He seemed uncertain, suspicious at first. Was I telling him that he would die? But he soon realized that, in reality, this form was not about his death. It was about his life, and what he did and did not want if something were to happen to that life. I saw a spark of change flicker across his eyes, as he looked down at the form I had handed him.

Then time was up, and John—the 80-year-old war veteran, the man with pneumonia and cardiovascular disease—transformed into a young, presumably healthy woman, as the two of us chuckled at the change. But what had just transpired was not fiction—not quite, at least. What had transpired was the enactment of a timely, crucial endeavor for our modern healthcare system.

Since the start of the new year, I’ve been participating in a weekly seminar at Stanford’s medical school, focused on difficult conversations surrounding serious illness. My motivations are simple: as a future physician, I face countless difficult conversations ahead, many of which will reveal my profound incapacity to guide another human being through the sufferings that they, and not I, experience. That is—I will be incapable, if I don’t come prepared.

So I was excited for the seminar’s second session, held a few weeks ago, on advanced care directives. On their surface, advanced directives are quite simple: legal documents dictating how a person’s health care decisions should be made, if that person becomes incapable of making those decisions. But what sorts of decisions are specified? How does one fill this document out? And what role do healthcare professionals have in the process?

The questions pulsed through my mind as I spoke with “John”—a character, essentially, played by a classmate who had read a fictional case report before class. (The case, nonetheless, was based on actual patients.) My job, playing the role of medical professional, was to help John understand his situation, his fears, his desires. That’s it. Even though we had spent the first half of class learning about advanced directives—their benefits and shortfalls—I was under no agenda to push this document in his face. Or at least that’s what I thought.

When I actually got to speaking with John—portrayed in Oscar-worthy fashion—I realized that I could not separate his situation, his fears, his desires, from the value of an advanced directive. As many families already know, things become messy at the end of life. Questions abound about the intensity of treatment, the continuation or refusal of care, the proper setting for one’s last days. These questions can be difficult for patients themselves; even those who have plenty of time to think. Now imagine a family, deciding in a split second whether or not the medical team should resuscitate their 80-year-old grandfather (or whoever it may be), without any prior guidance. Or, think about someone bouncing between home and hospital for the last few months of their lives. Assuming they were cognizant enough to be aware of the situation, what would they think?

They might hate their last days. Or, they might want things that way. This is the exact problem: without advanced directives, we simply don’t know. So when I read through John’s case before class, and when I met the “real” person before me, I couldn’t get these documents off my mind.

But what are these documents? For all the largeness and complexity of life and death, advanced directives are rather simple. Though a wide variety of different forms exist, two components are almost always included: the Durable Power of Attorney for Health Care (DPAHC), and the “living will.” In the DPAHC section, one lists an individual (and alternates) to make one’s medical decisions in the scenario that one is no longer capable of doing so. The “living will” section complements the DPAHC, providing specific instructions for things like prolonging (or not prolonging) life, and when (if ever) pain-relieving medication should be withheld. There is usually room in this section for “other wishes”—for example, the wish that one never be intubated. In the form used for class (which is also the form used in Stanford Hospital), sections followed pertaining to organ donation, designation of a primary physician, and witness statements. The entire document was only 5 generously-spaced pages, and there was no jargon. In the first half of class, I filled out my own advanced directive in fifteen minutes.

The form is valuable and simple. But there are still problems to overcome. For one thing, a recent study found that only 37 percent of Americans currently have advanced directives. This is in spite of a resurgent national conversation on end-of-life care, and new Medicare reimbursement for physicians who provide advance-care counseling. And while older adults are more likely to have advanced directives (particularly those in hospice care), no demographic has even approached comprehensive advance-care planning. Americans with chronic illness, for instance, have a 38.2 percent advanced directive completion rate—compared to 32.7 percent in healthy individuals. As one physician told Reuters, “The fact that only a third of sick patients are expressing their end-of-life wishes means we’re in trouble.”

There is clearly some gap, some pitfall, which has stifled the full potential of advanced directives. And as I learned while talking to “John,” that pitfall sometimes sits right in the middle of the doctor’s office.

Even after a lecture on advanced directives, I had struggled to communicate the relevance of these documents to a tired and cynical man. (Even if he was, in reality, a driven young woman.) I found myself struggling with his worries: that this form would take away his independence, that he was signing up to die. But thankfully, these same worries provided a key entryway to John’s desires and values. For advanced directives are, in truth, a declaration of one’s independence. They can be changed or revoked at any time, and superseded by a patient’s spoken or written word. The DPAHC can be restricted to certain decisions, allowing the patient final say in others. If this hypothetical man was tired of the hospital, burdened by the strangeness and beeping of intensive medical care, the advanced directive was one way to reclaim control.

The five minutes of role-play ended with a debriefing between my classmate and I. We chuckled over our thespian shortcomings, and the awkward unnaturalness of the first few minutes. But the lessons learned were no joking matter. We were both future physicians, preparing to serve an aging population—most of which had not thoroughly planned for the end of life. One document was not going to solve this problem, but it was a good place to start. The implications were thus clear as the seminar ended and we waddled off to lunch. My classmates and I would have to understand these forms, understand how we might talk about them with patients of all ages and activity levels. We would have to understand the rhythms of inpatient and outpatient care—how and when one might talk to patients about these forms. But most of all we would have to understand people, their goals, their fears, and what matters to them.

We will have much longer than five minutes to prepare. But our duty is urgent, and we must learn to make our case.

Complete Article ↪HERE↩!

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Dying while black:

Perpetual gaps exist in health care for African-Americans

Studies show that pain in African American patients is often not addressed.

By

Several years ago, MapQuest directed me on a 10-hour drive to visit my father in a Florida hospital. Complications from diabetes, including blindness, kidney failure, congestive heart failure, and a below-the-knee amputation, had taken their toll. This time my father, 69, was hospitalized for an infection of unknown origin that physicians could not name, despite their many attempts to grow cultures.

I did not know it at the time, but my father was dying.

Once I arrived at the hospital from Durham, North Carolina, I could hear his screams from the nurses’ station. “Never mind. I hear him,” I told the nurse whom I had just asked the location of my father’s room. “I’ll follow the sounds.”

That any patient would be left in so much pain that his screams could be heard down the hall was unacceptable to me. That this patient was my father, a man I had always known as a big, strong former football player – the kind of man other men didn’t dare cross (but who was also loving and gentle) – was difficult for me to process. Yet, here I was, being guided to his hospital room by the sound of his cries. Despite being a trained philosopher with an interest in bioethics, I had not yet begun to think about the ways in which racialized health disparities manifest even at the end of life. My father’s excruciatingly painful process of dying was but one example.

The author with her father, John Wesley Wilson, on Easter Sunday, 1977.

Gaps while living, gaps while dying

It is well documented that African-Americans experience excess mortality, or deaths beyond the expected mortality rate. However, even if disparities in the mortality rate for African-Americans were rectified tomorrow, the fact remains that we will all eventually die. And how we die matters.

According to a 2013 Pew Research survey, 72 percent of American adults have given at least some thought to their end of life wishes, with 37 percent of American adults having given their end of life wishes a “great deal of thought.” Some of these wishes include decisions about pain management, maintaining quality of life, and whether to continue aggressive medical treatment for terminal illness.

Additionally, research shows that people tasked with making treatment decisions for loved ones who cannot express their own wishes sometimes experience distress about watching their loved one suffer. Even months or years later, they wonder whether they made the “right” decision.

Pain ignored

Black patients generally receive worse pain management in primary care environments and emergency rooms. Even black children are not treated for their pain to the extent that white children are. Some attribute this to false beliefs about biological differences between black and white patients, including the belief that black people have “thicker skin” and, therefore, do not experience as much pain as whites. These false beliefs lead to inaccurate pain assessments by physicians evaluating black patients and an unwillingness to take the pain complaints of black patients as seriously.

This disparity in black patients’ pain management continues even as black patients are dying. Families often want to ensure that their loved ones are as comfortable as possible once patients reach the point where death is near. Racialized gaps in pain management lead to a denial of humane comfort care that contributes to unnecessary suffering for black patients and their loved ones.

Symptoms ignored

Pain is ignored more in African Americans patients, and so are symptoms.

Inadequate pain management is but one aspect of the lower quality of care that black patients report in general that affects when and how black patients die. In December 2015, 57 year-old Barbara Dawson was arrested and forcibly removed from Calhoun Liberty Hospital near Tallahassee, Florida, after she refused to leave without further treatment. Although she had been evaluated in the hospital, she was discharged despite her continued complaints of difficulty breathing. Hospital personnel apparently assumed she was faking her symptoms and called police to arrest her for being disruptive. Dawson collapsed before she could be placed in the police cruiser and was returned to the hospital where she died an hour later from an undetected blood clot in her lungs.

Dawson may or may not have been at the end of life when she arrived at the hospital. However, hospital staff allowed her condition to deteriorate by not taking her complaints seriously. She died only feet away from people who could have, at minimum, eased her process of dying. The hospital was later fined US$45,000, and Dawson’s estate settled a lawsuit against the hospital for $200,000 in 2017.

Less interaction

Dawson’s experience is a dramatic and appalling case. Nevertheless, one groundbreaking study revealed that physicians generally interact less – both verbally and nonverbally – with black patients who are dying than with white patients who are dying. At the end of their lives, black patients do not receive the same comfort care, including eye contact and touch, from physicians that white patients do.

The U.S. health care system can improve care for all patients at the end of life. However, this system still denies black patients the kinds of interventions that white patients often take for granted. This denial contributes to more painful, horrific deaths of black patients and compounds the grief of their loved ones.

In my father’s case, even as part of me still hoped for a miracle, the thing I wanted most in the world was for him to be as comfortable as possible. That this did not happen despite my best efforts still haunts me when I think about the end of my father’s life.

Complete Article ↪HERE↩!

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What the Death of a Child Does to Parents,

Psychologically and Biologically

Though parents mourning the death of a child experience classic psychological, biological, and social grief responses, there are unique challenges.

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The death of a child may be considered the worst trauma that any human can experience. Though it’s not a terribly common experience in the United States—about 10,000 children between the ages of 1 and 14 died in 2016—the horrific potential for childhood mortality looms large. While reassuring, the numbers also make plain why this one specific type of loss is so feared, so painful, and so stigmatized. 

“The death of a child is considered the single worst stressor a person can go through,” says Deborah Carr, chair of the sociology department at Boston University. “Parents and fathers specifically feel responsible for the child’s wellbeing. And they’re not just losing a person they loved. They’re also losing the years of promise they had looked forward to.”

Although parents mourning the death of a child are, in many ways, experiencing classic grief responses— usual battery of psychological, biological, and social repercussions—there are many unique challenges. The trauma is often more intense, the memories and hopes harder to let go of. As such, the mourning process is longer and the potential for recurring or near constant trauma is far greater. “The death of a child brings with it a range of different and ongoing challenges for the individual and the family. Everyday questions such as ‘How many kids do you have?’ can trigger intense distress.” explains Fiona MacCullum, a professor at the University of Queensland. “Some people do find ways of living with the loss. Others struggle to find meaning in life.”

Psychological Impacts: How The Trauma Of Child Loss Harms The Psyche

Interestingly, very few studies have delved into the nightmare of the death of a child. Most of the research on the psychological response to death focuses on the loss of a spouse or a parent. Presumably this is in part because of the difficulty of finding subjects for study and also in the potential difficulty of recruiting participants in anything longitudinal.

“While there have been significant advances in our scientific understanding of grief, we have a long way to go,”  MacCullum says. 

That’s not to say we are without literature. One 2015 study of 2,512 bereaved adults (many of whom were mourning the loss of a child) found little or no evidence of depression in 68 percent of those surveyed shortly after the tragedy. About 11 percent initially suffered from depression but improved; roughly 7 percent had symptoms of depression before the loss, which continued unabated. For 13 percent of the bereaved, chronic grief and clinical depression kicked in only after their lives were turned upside down. (If those numbers seem low, it’s worth remembering that it is entirely possible to be deeply sad without being depressed.)

Unfortunately, the research suggests that psychological damage done by a child’s death often does not heal over time. One 2008 study found that even 18 years after the death of a child, bereaved parents reported “more depressive symptoms, poorer well-being, and more health problems and were more likely to have experienced a depressive episode and marital disruption.” While some parents did improve, “recovery from grief…was unrelated to the amount of time since the death.”

“The first year after losing a younger child, a parent is at an increased risk for suicide and everything from major depression to complicated grief,” Dr. Gail Saltz, a psychiatrist at the NY Presbyterian Hospital Weill-Cornell School of Medicine, told Fatherly. Complicated grief differs from expected, normal grief, in that “there are more intense symptoms, alternating with seemingly no symptoms—a numbness—which potentially impairs their ability to function.”

“A parent who grieves without any type of serious complications, such as suicidal thoughts or self-harm behaviors, would be the best-case scenario,” says Dr. Kirsten Fuller, a physician and clinical writer for the Center of Discovery treatment centers. “Worst-case scenarios would be experiencing suicidal tendencies, psychosis or developing a mental health disorder or an eating disorder.”

Biological Impacts: How The Death Of A Child Changes A Parent’s Body

The impacts of this tragedy are not solely psychological. In 2018, Frank Infurna and colleagues looked the general health and physical functioning of 461 parents who had lost children over the course of 13 years. “We did see some decline, followed by a general bounceback, or recovery, over time,” Infurna, who studies resilience to major stressors at Arizona State University, told Fatherly. Physical functioning was focused on one’s ability to complete various everyday tasks, and “we didn’t see much change in this,” Infurna recalls. But when he reviewed bereaved parents’ self-reports—whether they felt they got sick often, or whether they expected their health to improve or decline— he found poorer perceptions of health.

As with all major grief responses, the mental health trauma of losing a child can kick off physical symptoms, including stomach pains, muscle cramps, headaches, and even irritable bowel syndrome. A handful of studies have found more tenuous links between unresolved grief and immune disorders, cancer, and long-term genetic changes at the cellular level.

One surprising impact, often seen among parents mourning the loss of a child, is known as broken heart syndrome—a condition that presents oddly like a textbook heart attack. Symptoms include “crushing chest, pain, ST-segment elevation on electrocardiography, and elevated cardiac enzyme markers on lab results,” Fuller says, citing her previously written work on the subject. “As a reaction to emotional or physical stress, the body’s natural response is to release catecholamines, also known as stress hormones, that temporarily stun the heart muscle.”

Chronic stress can even impact how the brain functions, as long-term exposure to the stress hormone cortisol has been linked to the death of brain cells. And in a cruel twist of neurobiology, the regions of the brain responsible for grief processing, such as the posterior cingulate cortex, frontal cortex, and cerebellum, are also involved in regulating appetite and sleep. This may explain why grieving parents develop eating and sleeping disorders in the aftermath of the loss.

“There are many many studies that have looked at the ongoing health effects of high levels of chronic stress,” Saltz says. “And when you look at lists of stressful life events, this is at the top.”

Social Impacts: How Child Loss Strengthens (Or Ruins) Families

Major life stressors naturally take a toll on marriages. But divorce in the aftermath of a child’s death is not inevitable. “It’s really important to underscore that the death of a child is not going to ruin a marriage,” Carr says. “It generally makes a troubled marriage worse, and a strong marriage better.” When dealing with illness or addiction, spouses who disagreed over the best course of treatment are at particularly high risk. “If one spouse blames the other, or feels the other did something to hasten the death, that’s almost something that cannot be recovered from.”

There are also factors, beyond the couple’s control, which may sour or save the marriage. “Grief, trauma, and depression impact one’s ability to participate in all meaningful relationships,” Saltz says. “But I have seen couples where the opposite is the case. They become closer, they support each other. This is the only person who can really understand how you feel.”

Mothers and father who lose a child often must also contend with surviving siblings. Figuring out how to parent after losing a child is a unique challenge and here, too, experts agree that the outcomes for both the surviving children and parents largely depend on the state of the relationship before the trauma. The death can both bring a family together or tear it apart.

When dealing with terminally ill children, one particular risk is that other siblings may feel neglected, or find too many responsibilities foisted upon them while the parents shift their focus solely to the suffering child. A sick kid “is going to consistently get more attention, because they have to,” Carr says. “Sometimes the other children’s needs aren’t met, or they are treated like little adults, given more chores to do, or expected to provide emotional support to the parents.”

“That can be really troubling for them. Or it can be empowering, but difficult.”

Predictors: How Age Of The Child And Other Factors Impact The Trauma

A handful of studies have tried to pinpoint key factors that influence how well parents adjust in the aftermath of losing a child. One 2005 study found that the child’s age, the cause of death, and the number of remaining children was strongly linked to the levels of grief displayed by parents, while depression was linked to gender, religious affiliation, and whether the bereaved sought professional help. Subsequent studies have uncovered other predictors of lower grief responses: a strong sense of purpose in life and having had the opportunity to say goodbye.

“It depends on the psychological makeup of the parent, whether they have a history of mental illness, what coping skills and what social supports they have,” Saltz says. Outside factors can play a role, too. Suicide is often more difficult but a terminal disease can present recurring traumas over a long period of time. Saltz also suspects that gender may be part of the puzzle. “This will undoubtedly shift, but historically mothers have been the primary caretakers and more likely to have their identities wrapped up in being mothers,” he explains, adding that this may result in stronger responses among women who lose their children

One of the most salient predictors of trauma is the age of the child. Miscarriages and stillbirths are devastating, and made worse by the fact that the loss is often diminished by public perception that a fetus is not a fully-formed child. But “is it as devastating as the death of a child who has been alive for many years? Not to diminish this experience, but I think not,” Carr says.

Once a child is born, however, the script flips. Older adults who outlive their children generally have an easier time coping than parents who lose very young children. “The age of the child is really important, because it speaks to promise,” Carr says. When a young child dies, that promise dies with them: “the graduation, the grandbabies, the marriages—that’s lost, too.”

Nonetheless, even older adults may suffer intensely after the death of an adult son or daughter. “You can meet someone who is 75 who loses a 50-year-old child, and it’s still devastating,” Carr says. “There’s this belief in the natural order. A parent should die first. So even though age matters, older parents still are quite bereft. They’re just losing less of that long-term promise.”

Coping: How to Provide and Seek Comfort

After a child dies, those who are left behind may experience depression, biological and neurological changes, and a destabilization of the family and marriage. “If you’re in this situation, and it is impairing your ability to function, you need to seek treatment,” Saltz stresses. “Parents who fall into major depression will be unable to parent other children, or be in a marriage. Psychotherapy can be helpful and medication can too, at least in the short run.”

The best thing that friends and loved ones of bereaved parents can do is be present, available, and supportive. If the bereaved speaks of suicide, take them to an emergency room; if the situation is less dire, but the grief does not seem to abate over time, help them make an appointment to speak with a professional or attend a self-help group with other bereaved parents. Because even the most sensitive souls are seldom equipped to help parents cope with a loss of this magnitude—and no matter how hard you try, you’re unlikely to really understand.

That’s where a self-help group’s value really shines through. “The one thing that people who have lost a child hate hearing from others is ‘I know what you’re going through,’” Carr says. “They cannot possibly know.”

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