Month: March 2023

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Making Meaning of Life When They Say “You Are Dying”

— What we know about suffering at the end of life is that it is most frequently a result of a psychological condition known as demoralization. It is defined by hopelessness, helplessness, and isolation. It is not physical pain people suffer from, rather, in the end, we most frequently suffer from existential pain. Demoralization is existential pain.

By Rebecca Gagne Henderson PhD, APRN, ACHPN

  • Finding meaning is essential to a good death experience.
  • There are a variety of ways to counter demoralization.
  • Early referral to hospice increases guidance to remoralization.
  • Finding meaning at the end of life is heavy lifting but worth the work.

Responding to a terminal diagnosis

Demoralization is a normal response to being told you have a terminal condition. You are suddenly acutely aware of your own mortality. You know you may not be there for a wedding, the birth of a grandchild, or a myriad of many other milestones. People realize the large sum in their savings does not affect the inevitable. One may wonder if that number will be enough to cover their daughter’s college tuition. Meaning is often measured by achievement, and now you have limited time to meet the goals you have planned or time to set new goals.

A typical death and outliers

While many still believe that death is a painful process, the fact is that most deaths are uneventful. There are times when people die in pain, but this is typically a result of a patient being treated by a non-pain or palliative care specialist. Unfortunately, such patients are often referred to hospice or palliative care too late when there is not enough time to manage patients symptoms. It is existential suffering that is more common at the end of life.

The importance of hospice

Early referral to hospice will not only help to assure a peaceful and painless death. It will also help to reverse demoralization. Hospice offers an interdisciplinary team that consists of a registered nurse, chaplain, social worker, home health aide, and a physician as the core team. It also consists of ancillary team members, which may include art and music therapists. Some hospices even offer massage or Reiki therapy. These all work together to increase meaning.

Hospice is adept at helping patients to find meaning in their lives as the end comes near. When meaning occurs, it is beautiful. This is known as remoralization. There was a case of remoralization that took place over ten years ago with a young woman who was only 22 years old, very angry, and dying. Her process of remoralization was a stellar example of how this is possible.

Ways to find meaning in life before it ends

There are several ways that individuals and clinicians work to find meaning. This section illustrates various means to work towards finding meaning at the end-of-life.

“Go Wish”: an educational game

During resident education, a game called Go Wish has been used. It is a card game that depicts possible goals on the face of each card that the participant prioritizes. The deck includes such goals as “I don’t want to die in pain,” “I don’t want to be a burden to my family,” “I want to feel close to God,” or “I want to be clean”. The surprising result of this game is that rarely are the things the clinician believes should be important coincides with what the clinician values as they step out of their role and examine what they would want for themselves at the end of life.

Determining and clarifying values is a step towards finding meaning at the end of life. The game was actually designed to be used by patients and families to make sure that the patient’s wishes are understood by the family or proxy. This game was studied, and it was found that frequently there is a vast difference between what the patient would like and what the family believes the patient would like. This game is available online as a card deck or can be played online.

Dignity therapy and life review

Another, more in-depth way to find meaning at the end of one’s life is through processes known as dignity therapy or a life review. The intervention involves storytelling, reminiscing, and highlighting milestones from one’s past. It has been reported by patients that these interventions decrease depression, increase quality of life, and increase a sense of dignity. This is accomplished with the help of someone on the interdisciplinary team and is recorded digitally or in print. The patient is given the document to do what they please.

Building a legacy

Should someone give this document to a loved one, it would then be considered a part of something known as life review. Legacy building is not just telling someone your life’s story. It may be finding meaningful photos and organizing them, so future generations know who their ancestors are and not lose sight of their histories. It could be making a recording of a song that your mother sang to you as a baby so that it can be played to your grandchild. It could be a letter written for your young son to read on his wedding day. Whilst this can be sad, it is also a work of beauty and great joy can be the end result.

Working towards reconciliation

Probably the most difficult is to make meaning through reconciliation and redemption. Not all family relationships are ideal, for that matter, there is no perfect family relationship. In hospice, it is often said that “hospice puts the fun in dysfunction.” We all know that over the years when you are close to someone, there will be a history of slights, moments of anger, and some disappointments. This is true in some relationships, more than others. How do we mend these fences when we are so close to death, and we thought we would always have more time? Ira Byock wrote a book called The Four Things That Matter Most. In it, he says that there are four things everyone should say to those they love before they die. Those four things are: “please forgive me, I forgive you, thank you, and I love you.”

These are difficult tasks, but at the risk of sounding like an old timer, anything worth accomplishing isn’t easy. We don’t grow in times of comfort. We grow during times of adversity. There will surely be tears, but there will be tears in any case when someone dies. This is hard work, however, meaning at the end will help the dying and the bereaved. It not only brings meaning to the dying but helps to ease the pain of those left behind as they grieve.

Complete Article ↪HERE↩!

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Why, when and how to talk with grieving clients about sex

By Kailey Bradley and Victoria Kress

Grief is an experience that everyone navigates at different points in their lives. For the past three years, the COVID-19 pandemic has impacted peoples’ lives in myriad ways and left many experiencing significant grief.

Loss can also deeply affect one’s sexuality, a concept referred to as sexual bereavement. Any form of loss, not just the loss of a sexual partner, can alter one’s sexual desire. As noted in Alice Radosh and Linda Simkin’s 2016 article published in Reproductive Health Matters, both sexuality and grief are stigmatized, which creates a double-barreled taboo. This double stigma can result in someone not feeling comfortable or confident addressing the topic.

When working with clients who have experienced loss, counselors must consider the interplay between grief and sexuality. There are few spaces where clients can address their grief and even fewer safe spaces where they can discuss their sexuality, so it is important that counselors consider how they can approach this subject with clients. This article discusses why this topic is important and when and how counselors can address the intersection of grief and sexuality with clients.

Why is this topic important?

Radosh and Simkin noted that some bereaved clients want to discuss how their sexuality has changed as a result of grief, yet they are often hesitant to do so. Clients may perceive that sexuality and grief cannot coexist. If this is the case, then they may feel shame if they have sexual feelings while grieving. Clients may also believe it is inappropriate to admit that they miss intimacy or that their sexual desire has changed. Other clients may perceive sexuality as distant and remote — something that may never again feel accessible.

The complexities of this topic, combined with counselors’ and clients’ personal discomfort, may cause counselors to avoid addressing it. This discomfort can arise because counselors are uncertain about how to broach the topic, counselors are uncomfortable with the topic of sexuality in general or the client is hesitant to bring the topic up. Although we do not know a lot about how various aspects of sexuality are affected after a loss, it is clear this is an issue that people experience as part of their normal development and growth, so counselors must be prepared to address this topic.

When to address this topic?

Although there is no right time to address this topic, counselors can introduce conversations related to the topic early in the counseling process. They could include questions about how grief has impacted the client’s sexuality on the intake form and then use the information the client provided to gently broach the topic during the first session. Counselors may also need to go slow and consider if it makes sense to bring up the topic during one of the initial sessions. For example, it may not be a good idea to discuss it in the first session if the client has a lot of shame around the topic of sexuality. In this situation, clinicians need to establish therapeutic trust and rapport before mentioning the topic. This approach will help clients feel safe enough to share their experiences.

Counselors can also ask clients to describe the various realms in their lives that have been affected by loss and grief, and they can mention sexuality as one possible area. And throughout the counseling process, clinicians can validate and normalize their clients’ experiences regarding grief and sexuality.

Because clients will move at their own pace and some may want to revisit the topic throughout counseling, regular check-ins with clients can be helpful. Counselors can encourage clients to engage in these difficult conversations by asking them to create “permission slips” to attend to forgotten or challenging dimensions of grief. Clinicians can give clients a scrap piece of paper and ask them to write out an area in their lives that is affected by grief that they find difficult to discuss. Another option is for counselors to write down overlooked topics related to grief and sexuality — such as dating, desire and arousal, physical changes, ways to talk about grief with a partner — on a sheet of paper and then ask clients to choose a topic from the list they want to discuss.

How can counselors help clients?

There is limited research on how to support clients’ sexuality in the context of grief. Formal interventions, however, may not be as important as the compassionate environment and empathic presence a counselor provides. Empathic presence can help clients introduce difficult conversations at their own pace and on their own terms.

Psychoeducation can also play an important role in counseling this population. For example, counselors can share that for some clients, sexual desire and arousal increase after a loss while others have the opposite experience. Providing education around the different reactions people have to grief can validate clients’ experiences and help them connect with the ways they may be experiencing grief. Counselors can also teach clients that grief is not just relegated to the cognitive or emotional domain; our bodies carry and process grief as well, and in this way, our bodies grieve. Providing this education to clients may allow them to feel relief that their somatic reactions surrounding sexuality after a loss are valid.

Another area of psychoeducation that could be valuable to clients is the identification of their grieving styles. The Grief Pattern Inventory is a tool that can help clients gain insight into how they are approaching the grief process. (For more, see Kenneth Doka and Terry Martin’s Men Don’t Cry, Women Do: Transcending Gender Stereotypes of Grief.) Understanding how a person is grieving can help the client and counselor gain valuable insight into the client’s grief process. Intuitive grief is an emotional style of grief in which emotional expression is valued, whereas instrumental grief is a cognitive style of grief in which problem-solving is valued. According to Doka and Martin, a client who identifies as having an intuitive style of grief will prefer a space to emotionally express the wide range of feelings that emerge when considering the intersection of sexuality and grief. In contrast, a client who identifies with an instrumental style of grief may prefer using specific techniques to reengage with their sexuality because they may view the changes in their sexuality after a loss as a problem to be solved. Counselors can introduce this concept to clients and invite them to consider how their grieving style may be affecting how they approach their sexuality after loss.

Finally, creative interventions can be a powerful way to help clients navigate these issues. Counselors can invite clients to write themselves a permission slip to engage with their sexuality in whatever way feels appropriate to them. For example, they might write, “I give myself permission to lean into the feelings that arise when I consider how my sexuality has changed in the following ways.” Clinicians can also encourage clients to create a grief playlist in which they share songs that help describe or capture the feelings surrounding the areas of their life that are affected by grief (including sexuality). Clients could share their grief playlists with their partners and identify how their grief experience is similar or different. Overall, outward expression of loss can help validate the complexity of feelings that arise when navigating this double-barreled taboo.

Addressing personal biases

When working with this population, it is important to be mindful of biases that both the client and counselor may have about grief and sexuality. Some common biases include the assumption that sexual desire disappears after a loss, sexuality is not appropriate to discuss after a loss or having sexual desire after a loss is wrong. To address these biases, counselors can use reflective questions and journaling prompts that ask individuals to reflect on what they have been taught culturally about grief etiquette, sexuality and scripts surrounding what is normal after grief. Again, some might feel judgmental of a griever whose sexual desire and/or arousal has increased after a death. However, addressing our own biases will help create a hospitable environment where a client is met with nonjudgment.

Conclusion

Counselors play an important role in empowering clients who are grieving. Even though we live in a grief-avoidant culture where we shy away from pain, counselors can create a refuge of hospitality where we can openly acknowledge what is uncomfortable. It is in our power and our scope of practice to gently remind clients that it is OK to talk about the intersection of grief and sexuality and to meet our clients with compassionate curiosity and encourage them to grant themselves permission and space to grieve and embrace their sexuality after loss in whatever way makes sense to them.

Complete Article ↪HERE↩!

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Aggressive Medical Care Remains Common at Life’s End

— Most older cancer patients received invasive care in the last month of their lives, a new study finds. That may not be what they wanted.

By Paula Span

In July, Jennifer O’Brien got the phone call that adult children dread. Her 84-year-old father, who insisted on living alone in rural New Mexico, had broken his hip. The neighbor who found him on the floor after a fall had called an ambulance.

Ms. O’Brien is a health care administrator and consultant in Little Rock, Ark., and the widow of a palliative care doctor; she knew more than family members typically do about what lay ahead.

James O’Brien, a retired entrepreneur, was in poor health, with heart failure and advanced lung disease after decades of smoking. Because of a spinal injury, he needed a walker. He was so short of breath that, except for quick breaks during meals, he relied on a biPAP, a ventilator that required a tightfitting face mask.

He had standing do-not-resuscitate and do-not-intubate orders, Ms. O’Brien said. They had discussed his strong belief that “if his heart stopped, he would take that to mean that it was his time.”

Listening in on the phone while a hospital palliative care nurse-practitioner talked to her father about his options, Ms. O’Brien provided a blunt translation to an always blunt man: “Dad, your heart and lungs are done.”

The next day, he declined surgery to repair his hip. A startled anesthesiologist and an orthopedist called his daughter, apparently expecting her to talk her father into agreeing to the operation. She didn’t try.

“He was dying,” she said in an interview. “He’d either die comfortably or, with a big surgical incision, he’d die uncomfortably. Or die of something more complicated — potential infections, bowel obstructions, so many things that can happen.” Mortality rates after hip fractures, though improving, remain high.

Her father, who wasn’t cognitively impaired, had decided that surgery was “silly” and unnecessary. She supported his decision and contacted a local hospice.

Families often have to run interference in such scenarios, and a new study in JAMA Network Open helps explain why. The authors, most of them at Case Western Reserve University School of Medicine, analyzed five years of data from a cancer registry, nursing home assessments and Medicare claims to look at “aggressive end-of-life care” among 146,000 older patients with metastatic cancer.

They compared nursing home residents’ care in the last 30 days of their lives with the care for non-institutionalized patients living in communities, the lead author, Siran Koroukian, a health services researcher at Case Western Reserve, said.

The team looked for commonly used markers of aggressive care, including cancer treatment, repeated emergency room visits or hospitalizations, admission to an intensive care unit, lack of hospice enrollment until three days before death, and death in a hospital.

“In all probability, hospice should have been considered” for these patients, said Sara Douglas, a co-author and oncology researcher at the Case Western Reserve University School of Nursing.

Yet the majority of both groups — 58 percent of community dwellers and 64 percent of nursing home residents — received aggressive treatment in their final 30 days. A quarter underwent cancer treatment: surgery, radiation, chemotherapy

Although studies repeatedly show that most patients want to die at home, 25 percent of the community dwellers and almost 40 percent of the nursing home residents died in hospitals.

Hospice leaders, palliative care specialists, health care reformers and advocacy groups have worked for years to try to lower such numbers. “Patients who received this type of aggressive care experience more pain, actually die sooner, have a much poorer quality of life at the end. And their families experience more doubt and trauma,” Dr. Douglas said.

Because the researchers used large databases, the study can’t indicate whether some patients actually opted for continued treatment or hospitalization. Some treatments the authors deemed aggressive could instead have been palliative, intended to increase comfort, like radiation to shrink tumors that might impede breathing.

Still, “these are really sobering statistics,” said Douglas White, director of the Center for Ethics and Decision Making in Critical Illness at the University of Pittsburgh School of Medicine.

>A lot of factors contribute to invasive actions in patients’ final days and weeks. Some originate within the health care system itself. Doctors may be reluctant to initiate difficult conversations about what dying patients want, or be poorly trained in conducting them.

“The minute you have this conversation, people assume, ‘You’re giving up on me,’” Dr. Douglas said. Even having an advance directive and a Physician Order for Life-Sustaining Treatment, or P.O.L.S.T., doesn’t always ward off aggressive treatment.

But studies also show that even when crucial discussions take place, patients and surrogate decision-makers frequently misinterpret them. “Families often leave these conversations with much more optimistic expectations than their doctors meant to convey,” Dr. White said.

His research has documented the effects of optimism bias. Surrogates understand positive prognoses more accurately than negative ones. They may grasp that most people in this situation will die, but insist that their particular loved one is different, fiercer, stronger. Misplaced optimism then leads to more aggressive treatment.

Sometimes, family demands prevail even over the patient’s own wishes. Jennifer Ballentine, chief executive of the Coalition for Compassionate Care of California, knew that one of her relatives didn’t want high-intensity care if he became terminally ill. But when he developed aggressive prostate cancer at 79, his wife insisted that he pursue treatment.

“He refused. He kept saying he just wanted to be in hospice,” Ms. Ballentine recalled. “She kept saying, ‘Absolutely not.’ ” He capitulated until, after three exhausting months of chemotherapy with several hospital stays, he died in hospice care.

The health care system could improve end-of-life care. When palliative care is introduced soon after a diagnosis, patients have a better quality of life and less depression, a study of people with metastatic lung cancer found. Though they were less likely to undergo aggressive treatment, they survived longer.

Palliative care doctors, skilled in discussions of serious illness, are scarce in some parts of the country, however, and in outpatient practices.

Adopting a so-called concurrent care approach to hospice might also ease these transitions. The Medicare hospice benefit requires patients to forgo treatment for their terminal illness; hospice through the Veterans Health Administration system, with more liberal criteria, allows patients to receive both treatment and hospice.

>A recent study of veterans with end-stage kidney disease, who were likely to die within days if forced to discontinue dialysis, shows the impact of concurrent care. Palliative dialysis — administered less often or for shorter periods than the standard regimen — can help control symptoms like shortness of breath.

“Being required to stop a treatment that is helping your quality of life can mean that you won’t sign up for hospice,” said the lead author, Melissa Wachterman, a palliative care doctor at Harvard Medical School.

In her study, veterans who discontinued dialysis when they enrolled in hospice received just four days of care before they died, so short a time that even expert hospices would struggle to provide full support. Those receiving concurrent dialysis as hospice patients, almost all through the V.A., averaged 43 days of hospice care.

Medicare has authorized pilot studies of concurrent care, but for now, patients and families must often seize the reins to make their end-of-life wishes known and determine how best to fulfill them.

>Some patients want every possible action taken to extend their lives, even briefly. For those who feel otherwise (former President Jimmy Carter, for instance), asking about palliative care and hospice can open the door to straightforward discussions.< James O’Brien was among the latter. His daughter drove 12 hours, from Little Rock to Santa Fe, to spend a quiet day with him. “We had some good time together,” she said. “We talked about what was going to happen.” She was there as the hospice team provided medication to keep him comfortable and withdrew the biPAP. “It was very peaceful,” she said. “I told him I loved him. I knew he could hear me. I stayed with him until he took his last breath.” Complete Article ↪HERE↩!

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Rise in infant deaths hits Black families hardest, study finds

Black babies experienced the highest rate of sudden unexpected deaths in 2020 and nearly three times the rate of deaths among White babies.

BY

A new federal study highlights a striking racial disparity in infant deaths: Black babies experienced the highest rate of sudden unexpected deaths in 2020, dying at almost three times the rate of White infants.

The findings were part of research released Monday by the Centers for Disease Control and Prevention, which also found a 15 percent increase in sudden infant deaths among babies of all races from 2019 to 2020, making SIDS the third leading cause of infant death in the United States after congenital abnormalities and the complications of premature birth.

“In minority communities, the rates are going in the wrong direction,” said Scott Krugman, vice chair of the department of pediatrics and an expert on SIDS at Sinai Hospital in Baltimore.

The study found that rising SIDS rates in 2020 was likely attributable to diagnostic shifting — or reclassifying the cause of death. The causes of the rise in sleep-related deaths of Black infants remain unclear but it coincided with the arrival of the coronavirus pandemic, which disproportionately affected the health and wealth of Black communities.

“Evidence does not support direct or indirect effects of the … pandemic on increased rates of sudden unexpected infant death, except for non-Hispanic Black infants,” said the study, to be published in the April issue of the journal Pediatrics.

The study’s authors, who call for further research into their findings, point out that the pandemic exacerbated overcrowded housing, food insecurity and other stressors, particularly among Black families — potentially leading to less safe sleeping practices, such as bed sharing.

Before the pandemic, overall infant mortality — including diseases, accidents and injuries, and unexplained deaths — had been on a downward trend in the United States. Some of that drop can be attributed to the enormously successful campaign launched in the 1990s to encourage putting babies to sleep on their backs, as opposed to facedown when they may re-breathe the carbon dioxide they exhaled or suffocate in soft bedding.

Tracking and understanding the causes of sudden and unexpected infant deaths on a national scale has been challenging in part because of different local practices of reporting and investigating the deaths. Data based on death certificates is notoriously inaccurate, and the pandemic introduced further complications, including shortening the time overburdened examiners could devote to investigating individual deaths.

The CDC’s Division of Reproductive Health has tried to address those problems by setting up monitoring programs in 22 states and jurisdictions across the country and by working with medical examiners and coroners to standardize reporting procedures. The new study draws on that research.

“This study is using good quality data, putting what some of us have been doing on a local basis on a national scale,” Krugman said.

In addition, a shift in terminology has complicated the picture. SIDS, or crib death, refers to the sudden death of an infant under the age of 1, usually during sleep and for unknown reasons, though often related to suspected genetic or environmental factors.

That term has fallen out of favor among some medical examiners and coroners who have replaced it with the broader term SUID, or sudden unexpected infant death under the age of 1. SUID refers to the often sleep-related deaths of babies in which the causes include suffocation from being caught between cushions of a couch or strangulation beneath a sleeping parent as well as SIDS and other unknown causes. About half of SUID deaths are SIDS deaths.

>“It’s a terrible situation,” said Richard Goldstein, director of the Robert’s Program on Sudden Unexpected Death in Pediatrics at Boston Children’s Hospital. “There is so much inconsistency in what these deaths are called. That’s not tolerated in any other area of medicine.”

On average, about 3,400 U.S. babies die suddenly and unexpectedly each year, according to CDC data.

To examine racial disparities, researchers chose to use the overall SUID rate, which allowed for consistent comparisons that were not affected by the different ways medical examiners report infant deaths.

In 2020, the SUID rate was highest among Black infants (at 214 deaths per 100,000 live births), followed by American Indian or Alaskan Native infants (at 205 deaths per 100,000 live births), and nearly three times the rate for White infants (75.6 deaths per 100,000 live births).

Understanding the causes of those deaths, many of which are unobserved, is key to preventing them.

“We don’t know how to prevent SIDS,” said Michael Goodstein, a neonatologist at York Hospital in Pennsylvania, who said research is examining factors such as brainstem abnormalities and respiratory problems. “But we should be able to prevent suffocation deaths.”

Sharyn Parks, one of the study’s authors and a senior scientist at the CDC’s Division of Reproductive Health, said there are two clear messages to take from the study — the need for researchers to examine factors like poverty that make some families more vulnerable to poor health outcomes as well as the need for parents to remember the practical steps they can take.

“We want to continue emphasizing safe infant sleep practices, putting babies on their backs and removing all soft bedding,” Parks said.

Once it is available, data from 2021 and 2022 should provide a clearer sense of the role the pandemic may have played in widening disparities between different racial groups.

“We are getting more and more a sense that poverty and multi-factorial issues are really important for being able to protect children,” Goodstein said.

Complete Article ↪HERE↩!

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Grieving Through Google

— After my dad’s cancer diagnosis, Google Translate became a tool for survival—and then, remembrance.

By Miun Gleeson

When my dad died, he became part of the cloud.

Not the one up high in the sky, but rather an online cumulus that now stores and archives a record of his last 18 months on earth. On my laptop, and even more prominently on my phone, I carry with me digital traces of my dad that I can’t yet bring myself to access. Four years after his death, I still sit with a kind of grief that remains more raw than residual, and his memory lingers in digital purgatory—undeleted yet untouched; saved but not sought. He “lives” in this liminal digital space; like a grave I can’t yet bring myself to visit, but simply know is there.

This notion of keeping my dad “close” is ironic, given that the experience of losing him was marked by deep distances. My dad and I lived 1,800 miles apart, he in California and I in Missouri. There was also linguistic distance between us, which was in many ways more difficult to bridge. As an American-born Korean, English had always been my first language, and I never really learned how to speak Korean. I did a short stint at Korean language school, where I learned the alphabet and mastered the preemptive explanation I’d have ready anytime I encountered another Korean person: “I understand better than I can speak.”

Despite having emigrated to the U.S. from Korea nearly 40 years ago, my dad similarly never mastered English. Even though my Korean fluency would surely have made his life easier, he never forced it when I was younger, which made him an outlier among many parents in our community who were raising bilingual first-generation children. As an adult, I asked my dad—with a mix of both surprise and gratitude—why he never mandated I learn Korean with the same insistence as so many other parents.

“Why I do? Because you born here and die here,” he answered.

Still, our bond was deep, enduring, and always made whole despite his broken English and my equally fractured Korean. We codeswitched and improvised; we asked and answered each other in both languages. My dad had his standbys and shorthand (“Did you eat yet?”) that expressed everything I ever needed to know about how much he loved me. Ours was a profound, implicit relationship that was strong enough to weather anything. Until it was put to the ultimate test.

When a loved one is dying, the learning curve is steep. There is a dense vocabulary of disease and little time to get up to speed. In need of a fast and familiar resource, I Googled my way through all the insidious ways cancer can destroy a liver and pages of impossible, vowel-laden medications.

But my dad and I required a two-step process as I assumed my role as language liaison with his medical team. I had to graduate to Google Translate, enlisting it to do what I could not as I learned how to convey bad news in two languages. I had never used Google Translate before and was relieved by its simple interface. Choose your languages, copy and paste. As they flashed on the screen, the translations themselves carried a certainty and confidence that the information they conveyed often lacked. I constantly toggled between English to Korean and Korean to English. Along the way, I acquired some new words in Korean, like bangsaneung for radiation and gan for liver. But even my latent knowledge of Korean surprised me at times, as I remembered the word for sadness, and even complete sentences: Appa, did you eat yet?

Clumsily, my dad and I did this dance for a while; me trying to facilitate care despite being geographically undesirable and culturally inept, never mind what I felt this long goodbye was personally inflicting on a molecular level. In the winter of 2017, when we were just six months past the initial diagnosis and learned that the cancer would most assuredly kill him by summer, my dad announced he was returning to his native Korea to die.

Why I do? Because I born there and die there.

Once my dad moved, the language barrier became even more difficult to manage with my non-English-speaking relatives, who had to now serve as my intermediaries. We were pivoting to long-distance death, shifting settings and reversing roles. My first phone calls to Korea to get updates were disastrous, as the seemingly simple act of communication became an impossible juggling act: talk, Google Translate, listen, Google Translate, don’t fall apart.

Desperate for a better way to communicate, I downloaded KakaoTalk. The free and widely popular Korean messaging platform (which also includes voice and video calls) was convenient—all of my family members were already on it, and as soon as I added my name and a profile picture of me and my dad, we quickly found each other.

Indispensable companion pieces, I used KakaoTalk in tandem with Google Translate. It was far from perfect, but we eventually established a clunky but workable communications cadence by relying primarily on the chat function. Those saved conversations through KakaoTalk also live in the cloud. But I have only revisited the translated transcripts with my aunts and uncles once, knowing that some of these halting, heart-wrenching exchanges will never truly leave me.

Is he okay? Why doesn’t he want me to come see him now? This is absolutely breaking me.

Your father doesn’t want you to remember him this way. He says you are his entire life.

For weeks, KakaoTalk and Google Translate were a lifeline to my dying dad. I carried an intense shame at having to use an online translation service to communicate both my personal and practical needs that final spring. But when I finally made it to Korea, I was embraced by my family’s tacit, touching love that could only be conveyed in person. My dad waited to die until I flew back to the States after a weeklong vigil. The news was fittingly relayed to me via KakaoTalk, 15 hours into the next day on the other side of the world. I flew back to Korea one final time for his funeral—janglye, Google Translate informed me. But the actual experience of saying goodbye defied easy translation.

I realize that it seems odd to hold on to this untouched electronic ecosystem of a period that was just terribly sad. I can’t help but see my archive of searches, translations, and conversations within these apps as personally damning. They lay bare my shortcomings, my faults, my too many questions, my one-minute-let-me-translate-this entreaties. They provoke a maelstrom of “ifs”: If I had lived closer, if I had been more Korean, if I had somehow been better prepared for the unthinkable so I didn’t have to rely on my phone to get me through this.

But there is another set of “ifs”: What if I didn’t have these technological supports? They did what they were supposed to on a pressing, practical level—educate, coordinate, confirm, translate, expedite, communicate. And even though I cannot yet click through it, this electronic ephemera also reinforces that my loss, largely experienced in an out-of-body haze, was very much real. It’s an untainted, technologically aided record that is available if and when I can revisit it.

I hold on to hope that the way I see this digital record could one day change—no longer as a personal indictment, but perhaps as evidence that I tried. Perhaps as a first step toward slowly forgiving myself. For now, it is a phantom presence hanging overhead, omnipresent and accessible at any time, a reminder that my dad is nowhere and everywhere all at once.

Complete Article ↪HERE↩!

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What doctors wish patients knew about falling U.S. life expectancy

— For the second year in a row, life expectancy in the U.S. declined—this time to the lowest level since 1996.

By Sara Berg, MS

That marks a disturbing turn from the historical trend. In 1900, U.S. life expectancy was 47 years, and by 2019 it hit 79. But in 2020, life expectancy fell to 77 and dropped further to 76.4 in 2021, according to a report from the Centers for Disease Control and Prevention.

This alarming trend is clearly not an anomaly and is primarily due to heart disease, cancer, COVID-19 and the ongoing drug-overdose epidemic. Heart disease remains the leading cause of death, followed by cancer and COVID-19, which accounted for about 60% of the decline in life expectancy. Meanwhile, overdose deaths—which account for more than one-third of all accidental deaths in the United States—have risen five-fold over the past two decades.

The AMA’s What Doctors Wish Patients Knew™ series provides physicians with a platform to share what they want patients to understand about today’s health care headlines, especially throughout the COVID-19 pandemic.

In this installment, three physicians took time to discuss what patients need to know about declining U.S. life expectancy. They are:

  • Sandra Fryhofer, MD, an Atlanta general internist and chair of the AMA Board of Trustees. Dr. Fryhofer also serves as the AMA’s liaison to the CDC’s Advisory Committee on Immunization Practices (ACIP) and is a member of ACIP’s COVID-19 Vaccine Work Group.
  • Bobby Mukkamala, MD, an otolaryngologist in Flint, Michigan, and immediate past chair of the AMA Board of Trustees. Dr. Mukkamala is also chair of the AMA Substance Use and Pain Care Task Force.
  • Charles Wilmer, MD, an interventional cardiologist at Piedmont Heart Institute in Atlanta and an alternate delegate in the AMA House of Delegates for the Medical Association of Georgia.

People are dying younger

“What’s interesting is you would expect it to be all older people who died,” Dr. Wilmer said. “If you look at infant mortality, it didn’t change at all. If you looked at people less than 25 years old, the mortality only went up 2.5%.”

For those “65 or older, their mortality was higher, it increased by 20%. What’s interesting is the 25- to 35-year-old group increased 24% and the 35- to 44-year-old group increased the most,” he said.

The decline in life expectancy isn’t just about shaving years off older adults. It’s also about more people dying younger, which was seen “with COVID and accidents, one-third of which are from overdose,” Dr. Mukkamala said.

While people 65 or older are at risk of severe outcomes from COVID-19, that population has higher vaccination rates than younger adults. As a result, we’ve seen people under the age of 65 dying from COVID-19. Overdose deaths are less likely in those over the age of 65, they are most common among those 25–54 years old.  

Overdose “can be the cause of death as well, but it’s not something that is particular to the elderly,” he said, noting that overdose deaths are “even more alarming—that it’s not something that’s taking years off the end of our life. It’s taking people out of life in their younger years.”

Several factors led to the decline

“The decline in life expectancy was thought to be due mostly to COVID-19. Suicides, homicides, chronic liver disease and cirrhosis all went up,” Dr. Wilmer said. “There’s been a lot more drinking, a lot more alcohol, less socialization and more liquor being consumed.”

“Liver disease bumped influenza and pneumonia to be one of the top 10 causes of mortality for the first time. And then unintentional injuries including overdose,” he said. “So, there are a number of things that led to this decreased life expectancy.”

“The second thing is that when you have pandemics, the access to health care drops. So, the person has a worse diet, it’s more difficult for them to get their medicines and they’re less focused on taking their medicines,” Dr. Wilmer said. On top of that, “they sleep more poorly, they eat ultraprocessed foods that have a lot of sodium that leads to higher blood pressure. And then of course there’s loneliness.”

Overdose deaths are at a record high

“Overdoses are one-third of all the accidental deaths. In the last 20 years, this has gone up five times,” Dr. Wilmer said. “We have got to come up with a better plan for preventing overdoses.”

“The American Medical Association has been working on this for many years and initially the focus was internally focused, looking at physicians and our prescribing habits. We learned a lot from that introspection,” said Dr. Mukkamala. “That first phase was looking internally and saying: What can we change about our prescribing habits so there’s not so much narcotic out there?”

“And we did those things. The amount of prescribing that physicians have done for opioids has dropped by almost 50% in the past several years. Yet we are at a record number of deaths associated with overdoses,” he said. “That’s what made us realize that the next chapter in the history of substance-use disorder and opioid-related deaths in this country isn’t coming from exam rooms and operating rooms.

“It’s coming from out there in our communities because of illicit fentanyl and heroin that’s driving the record number of deaths,” Dr. Mukkamala added. “That’s why we’re seeing a decrease in life expectancy and that younger segment of the community that’s having a record number of deaths associated with illicit drugs.”

Access to naloxone isn’t enough

Over-the-counter access to the opioid-overdose antidote naloxone is “one critical piece of the solution, not the saving grace of everything related to substance-use disorder and the record number of deaths,” said Dr. Mukkamala. “But certainly, the more naloxone that’s available, the more lives we can save.”

“What we also see from those who work with patients with substance-use disorder is that naloxone is an intervention that saves their life at the very end of that behavior,” he said. “It doesn’t solve the underlying problem that led to that critical moment.

“And if they still have a substance-use disorder, they’re still going to use after that. So the danger in that isolated event is oftentimes not enough to stop them,” Dr. Mukkamala added. “Treating them with naloxone is one element of the solution, but dealing with their underlying mental health issues, getting them treatment, getting them on something like buprenorphine can help before it gets worse.”

Heart disease is still a leading cause

“There are multiple factors that lead to heart disease: hypertension, high blood pressure, high cholesterol, diabetes and smoking,” said Dr. Mukkamala. “These are all factors that can lead to heart disease and why we’re still seeing that at such a high level is because all of these factors are at high levels.”

“At the AMA, we’ve really made an effort to deal with some of those precursors. It’s great to save somebody’s life when they get chest pain … but it would be more wonderful to prevent them from that crisis,” he said. That’s “because we can’t save everybody in that moment, but we sure can reduce the number of people who end up in that crisis situation by making sure that if somebody has prediabetes, that we alert them of that long before they have any symptoms of diabetes.”

“And same thing with hypertension. How great would that be to alert somebody? Stage one hypertension doesn’t usually cause symptoms, but we can find it,” said Dr. Mukkamala. “It’s no different than getting checked for prostate cancer or getting a pap smear for a gynecologic exam. These screening interventions help to find disease before it causes a bigger problem.”

“There has not only been significant change in care for diabetes and blood pressure, but there’s also been much improvement in cholesterol and lipid management,” said Dr. Wilmer. This has “brought down the heart disease mortality and risk.”

Misinformation has run rampant

Throughout the COVID-19 pandemic, “politics have also come into play as vaccines and masking become political hot buttons and misinformation spread through social media platforms became rampant,” Dr. Fryhofer said, acknowledging that “people are tired of the pandemic.”

“We in the U.S. have access to vaccines. We have access to COVID therapeutics, but our life expectancy is among the lowest of wealthy countries,” falling by 2.7 years from 2019 to 2021, she said. “Political polarization and misinformation likely play a role.”

We have the resources for change

While “COVID-19 has now gone from pandemic to endemic, we are at a different place than we were in January 2020,” she said. “We now have vaccines. There is now hybrid immunity from infection and vaccination—two exposures to the spike protein from the vaccination or infections provide some degree of protection.

“But read the fine print—only if you survive infection,” Dr. Fryhofer said, emphasizing that “the new bivalent Omicron booster is effective. It works against current circulating strains including XBB.1.5, but more people need to get it.”

“COVID-19 is not gone. It’s still here and the virus is evolving. We don’t know which variant is next but for the one that’s currently circulating, this bivalent vaccine has your back,” Dr. Fryhofer.

Cancer is still so prevalent

“It’s a devastating disease and we’re getting better at treating it. We’re getting better at detecting it, but it’s still so prevalent,” said Dr. Mukkamala. “It’s not that we’re getting worse at the treatment of cancer. It’s just such a prevalent disease that the number is going to be high for a long time to come.”

“And that’s why we are still focused—just like with these other diseases—at finding it early with appropriate preventive  screening measures,” he added. “Colon cancer and breast cancer are right at the top of that list, and these are all things that we can screen for so that we can detect them early before they become more symptomatic, dangerous and advanced.”

Screenings for cancer have fallen

“The other part that’s a little bit more difficult is people didn’t come in for routine cancer screenings during the pandemic,” Dr. Wilmer said. “So, all of a sudden, now patients are showing up a year, two years later with more advanced cancers as well as more cancers that could have been stopped earlier.”

“Breast and lung cancer screenings have dropped since the pandemic began, which could likely translate into delayed cancer diagnosis and an increase in cancer deaths,” Dr. Fryhofer said. Unfortunately, “breast and lung cancer screenings haven’t bounced back after a pandemic pause.”

“A recent study in JAMA Network Open suggests decreases in cancer screenings seen early in the pandemic have not resolved,” she said, noting that lung scans dropped 24% in the first pandemic year and 14% in the second. For breast-cancer screening, there were 17% fewer mammograms in the first year and 4% fewer in the second.

Don’t panic, but don’t ignore it

Knowing that life expectancy in the U.S. has declined is “not a reason to panic, but something that shouldn’t be ignored,” Dr. Mukkamala said. “Changing the way we take care of ourselves and our loved ones is going to be an important outcome.”

There is “no reason to panic about it, but it shouldn’t be ignored otherwise we end up with more than a two-year trend of a downward life expectancy,” he said. “It’s only through effort—not by luck—that we will go in the right direction again.”

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When death becomes you

— My journey towards becoming a death doula

Dana Purdom taps into her deep intuition to find her calling as a death doula.

By

When I was as young as four years old, my mother would send me to my grandparents’ home to stay during the summer months. I was this little girl, neatly coiffed, dressed impeccably, and placed on a plane to fly across many states to Leakesville, Mississippi. I was a quiet and reserved child, and shy, which, I believe, others perceived as timidity and an inability to fit in. But I knew this was not true.

I was deeply intuitive, sensing, empathetic, and feeling all things around me. I wasn’t quiet. I was observant. I wasn’t shy. I was curiously aware. I wasn’t timid or unable to blend in. I was simply different. And this made others uncomfortable in ways I couldn’t name or remedy at such a tender age. So I shrank into myself and sat quietly as I watched others – aunts and uncles, cousins, friends – live their lives out loud. The only people I felt understood and knew me were my grandparents. They had a way of communicating, seeing and loving me in ways I can only attribute to them also being intuitive.

During those summers. I spent hours wandering in the fields and deep woods, exploring and communing with nature. I heard the sounds of animals moving from one place to another, giving instructions of where they were headed next. I would listen to the trees, the leaves and the brush as they sang, sending messages to one another of what season it was, and whether or not to bend and stretch when the breath of God blew on them.

And though these times were glorious, expansive, and faith-forming for me – instilling a sense of other-worldly trust and peace – there were moments of fear of the unknown, of otherworldly happenings that I couldn’t explain.

At times, asleep in the back room of my grandparent’s home, I would be overcome by a weighted feeling, making it difficult to breathe. Subconsciously, I was taken to a deep, dark, unknown place. No matter how hard I fought – to get away, to breathe, to scream – it was pointless, as the grip on me was too great to overcome.

“The witch was riding you,” a family member told me.

Whenever this happened, it would physically feel as if I was experiencing death, or the dying process. First: asphyxiation, immobility and panic would set it in because somehow, even in this state of paralysis, I knew death was imminent. And then, an unwavering calm, a gentle peace, a release or surrender to the unknown would take over, shortly after the “witch riding my back” dismounted and the paralysis ended.

These moments are what I understand to be my induction into the mystical world of death and dying. As these moments continued to happen over the years while visiting my grandparents, I began to intimately connect with the peaceful surrender of death. It no longer frightened me, but instead, drew me closer. I wanted to know more about what I was experiencing and the visions I saw. I wanted to know more about death and its transcendental relation to the beyond.

Early on, I couldn’t comprehend my curiosity about death or why these experiences happened to me. But I’ve come to understand this mystical phenomenon as a gift, a blessing and a means to serve others by becoming a death doula.

A culturally spiritual call

We live in a death-denying culture. But because of my childhood, the draw of the witch that was riding my back, and my growing intimacy with death, my curiosity grew into a deep passion: what happens, I wondered, when a physical body is no longer present in the natural world and has returned to its original form as a spirit, transitioning into its next phase of life?

For me, death is never ending; it is a transition from one life-form to the next. I am a soul cultivator, one who seeks to hear the heart of others, beyond the words they speak, desiring to reflect back to them the love, care, and peace they long for in their lives. If they never received this type of care in life, if I can give that to them in death, I will have lived fully into my call of “doing the work my soul must have,” as theologian Katie Geneva Cannon challenges each of us to do.

For me, death is never ending; it is a transition from one life-form to the next.

Like a midwife who assists in the process of birthing, a death doula “guides a person who is transitioning to death and their loved ones through the dying process,” according to the International End-of-Life Doula Association. Death doulas have existed as long as death itself; culturally, however, Black death doulas have specifically answered the spiritual call between Black people and their tormented, historical relationship to death and dying. This became more pronounced during the COVID-19 pandemic and the growth of social movements focusing on Black and brown lives — and deaths.

“The inequities in the way we live and die could not have become more apparent during this time, coupling both the pandemic and social movements we’ve witnessed in the last two years,” according to grief consultant Alica Forneret in a story on refinery29.com. Forneret also is the founder of PAUSE, which creates culturally specific spaces that provide end-of-life resources and grief support.

Nikki Giovanni once said, “death is a slave’s freedom.” Black people’s history with colonized culture has demanded that the care and personal needs of its own community regarding death and dying be met in ways that greater society doesn’t recognize.

“God’s salvation is a liberating event,” James Cone wrote in his book, The Cross and the Lynching Tree, “in the lives of all who are struggling for survival and dignity in a world bent on denying their humanity.”

New rhetorics of lynching and continual perpetuation of Black tropes dehumanize and distort one’s humanity in death. These are primary reasons why Black culture, by restoring power and dignity to the dead, has taken personal agency in God’s vision for humanity. Black funerals, therefore, are celebrations that honor the life that was lived on this side of eternity, and they rejoice in the transition into the next.

And this was what our ancestors did in remote, secret places: they practiced sacred religious traditions because they were prohibited from performing funerals or any traditions that commemorated the dead. Black funerals were once one of the only spaces not permeated with Whiteness, where we could live into our traditions in our own sacred ways.

And so, more and more Black people, by becoming or by employing death doulas, are seeking to protect the knowledge that not only Black lives matter, but also Black deaths.

Black ancestry has taught us to acknowledge death as a moment of joy, to celebrate the transition from pain and suffering in this world, to that of being in the arms of their Creator, where they will walk around heaven all day, as the song goes. Funerals, for instance, are called “homegoing services,” and are outpourings of both joy and grief. Helping the dying do so in dignity while remembering and honoring ancestral traditions, and ensuring that the family of the dying person is nurtured, became the impetus that moved me in the direction of becoming a death doula.

Black ancestry has taught us to acknowledge death as a moment of joy, to celebrate the transition from pain and suffering in this world, to that of being in the arms of their Creator.

While there are currently no licensure requirements to become a death doula, organizations exist to provide death doula certification and training. Going With Grace (goingwithgrace.com) offers death doula/end-of-life training “steeped in ancient wisdom traditions adapted to modern times” and prepares individuals to take the National End-of-Life Doula (NEDA) proficiency assessment. Passing this curriculum exam, according to the NEDA website, earns the doulas a badge that assures them and the families they assist that the doula has competencies and knowledge around, among other things, spirituality, the dying process, non-medical care and comfort, and grief, and that their understanding of these areas aligns with those of others in the field.

Being a death doula differs from chaplaincy and hospice care. While death doulas do not provide medical care, they do collaborate with hospice programs, bridging the gaps and strengthening the relationships between medical and non-medical support, as noted on cremationassistance.org. Hospice care is regulated by Medicare rules, which limits caregivers’ interactions with patients and families. Death doulas bridge this gap by showing up in the following ways: grief support, advance health care planning, end of life planning, practical training for family caregivers, funeral/memorial planning assistance, needed relief for family caregivers, companionship to patients, vigil presence for actively dying patients and more, as every death doula is different and has their own specialties they provide.

And while chaplains also do this work, there are differences between chaplaincy and being a death doula: education, training, certification, and ways of making meaning of a person’s experience of sickness, death, and dying. Chaplaincy is not only shaped by one’s own religious tradition but also the extensive religious and philosophical studies completed during graduate school. Death doulas have more flexibility in their practice. Doulas are able to serve as many or as few clients as they wish to serve at a time, whereas chaplains are limited to serving those within the institutions where they are employed. And death doulas are independent contractors charging an hourly rate or setting a flat fee, but services are not covered by insurance, Medicare or Medicaid.

A death doula can also help relieve the burden of improper or confusing end-of-life planning, and support family members who are responsible for completing their loved one’s affairs. You can find a death doula by checking registries that are available in individual states.

Death should not be a taboo topic

We live in a death-denying culture, where the discourse surrounding death is taboo, and we don’t want to accept that we live in a finite world. We shun people who talk about death, especially those people who may be living terminal lives. We do this as a means of self-preservation, not wanting to be exposed as being vulnerable or appearing weak for expressing emotion. I believe that if we talk about death and dying more, in constructive and life-giving ways, and with the support of a person like a death doula, the topic will become less taboo.

I recognize I have a unique perspective concerning death and dying. Death is inevitable, and neither humans, nor any of creation, were meant to live forever. I believe we are spiritual beings, having a human experience. And as I was writing this article, the song “Take Me to the Water (to be baptized)” by Nina Simone dropped in my spirit.

In death, we are reminded of our ‘maternal baptism’: dying to the spiritual realm from which we came and, born to life in the maternal waters of the womb, becoming the physical beings we were created to be. In baptism, we see the death and resurrection of Christ as well as our own. Though, in baptism, we are “not actually dead, placed in the tomb, and brought back to life …” the sacrament re-members us to Christ’s passion, giving us new life in Christ (Cyril of Jerusalem).

If we allow this consideration of baptismal grace being the death and life of a soul, then death becomes a return to the waters that once birthed us. No longer physically present in the earthly realm, and yet, still present as spirit.

Like other injustices, this “holy disruption” of a pandemic “has magnified the problems Black people face in the death and dying space,” says Alua Arthur of Going With Grace.

By dispelling myths regarding death, through curating soft landing spaces for mind shifts to occur, while holistically supporting those in the midst of experiencing death, I aim to become a change-agent in the death doula industry — re-writing the narrative of what Black death is and how beautifully sacred the dying process can be.

“When death comes to find you, may it find you alive.” — African Proverb

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