Tag: Education

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A visit with my late mother’s nurse, and a lesson on what you should know about hospice care

Grace Lopez, left, with her daughter Debbie Lopez, just before she was discharged from a hospital to hospice in January 2019.

By Steve Lopez

When my mother was dying, a private, for-profit hospice agency failed her — the assigned nurse was late for the first visit because of a staffing shortage. My mother suffered in misery without pain medication, and our family dumped the agency and switched to a nonprofit.

Karen Eshelman was the nurse who came to the rescue, calmly and quickly adjusting the pain medication and compassionately preparing us for the inevitable. Grace Lopez died peacefully a couple of days later, just shy of 90.

Eshelman showed up at my mother’s funeral to pay her respects, and recently, almost five years later, I dropped by her home in Concord to say thanks.

“For a lot of us in hospice care, something happened in life that made us want to give back,” Eshelman told me in her kitchen, wearing her blue uniform as she got ready for another shift. She said she lost her first husband when she was 30, and with their two kids to care for, she had to learn how to confront death and move past it.

“I know families will get through it,” said Eshelman, who remarried 25 years ago. “Grief isn’t easy, but you will come out on the other side and have good things happen in life.”

Demand for hospice care will grow dramatically as the population ages, but staff shortages, corporate profiteering and a rash of Medicare fraud and billing scandals have roiled the industry, with recent exposes in the L.A. Times and a joint ProPublica-New Yorker investigation. For a time, nonprofits resisted those trends, but Eshelman surprised me with a news flash.

A woman with a badge around her neck stands and poses for a picture
Karen Eshelman is a registered nurse who works at Hospice East Bay and cared for Grace Lopez in her final days.

She and her colleagues at Hospice East Bay had just voted to join the National Union of Healthcare Workers because they felt that industry pressures had begun to hit their agency. Eshelman said the big issue wasn’t money, but a belief that staffing shortages were impacting the quality of care.

“It leads to nurses being burned out, and not just nurses, but social workers and spiritual care counselors,” Eshelman said. “And it leads to more people calling in sick because they just need a break and they need a day off.”

Nearly 400 employees at five Bay Area nonprofit hospice agencies have joined the same union since May 2022, mirroring organizing efforts at hospice agencies in several other states.

Sal Rosselli, president of NUHW, said the corporatization of what had been primarily a faith-based, community-oriented, charitable industry has led to “an increasing drive to focus on the bottom line as opposed to providing adequate care or taking care of healthcare workers.”

When you’re holding the hand of a loved one who’s dying, you’ve got a lot on your mind, but it’s not the hospice agency’s bottom line you’re thinking about.

Some hospice employees “are being told they only have 30 minutes with a patient,” said Richard Draper, NHWU’s director of organizing, even though depending on the level of care needed, a patient might need far more attention. “The major issue for us is staffing,” Draper said, “and being able to have a voice in how the care is delivered.”

Jessica Williams is a registered nurse at the nonprofit Providence Hospice Sonoma County, where 131 employees organized in February. “I think ‘nonprofit’ is really only a name,” said Williams, who got into hospice care after her mother died in a car accident and she attended a grief support service at a hospice agency. She said a layoff and the scaling back of visits by home health aides “makes it more difficult for us to do a good job out there,” even as executives in the agency’s parent organization pocket millions in compensation.

The director of her hospice agency didn’t respond to my interview request, but I checked the ProPublica log of nonprofit tax records, in which the tax-exempt St. Joseph Providence Health — one of the nation’s largest nonprofit healthcare companies — listed its mission as being “steadfast in serving all, especially those who are poor and vulnerable.” For the 2021 tax year, according to the log, company Chief Executive Rod Hochman pocketed more than $10 million and was one of 11 executives at the company making above $1 million.

This is a nonprofit?

Claire Eustace, a spiritual care clinician at Hospice East Bay, said her job is made more difficult when the nursing team is understaffed and overworked, and there have been times when nurses had to work 10 straight days.

“It affects my work in that … loved ones are upset because they’re not getting the support they need,” Eustace said.

“We were being stretched too far and couldn’t provide good care and were getting burned out,” said her colleague Andrea Hurley, a social worker. Caseloads for social workers went from 26 to 30 and more, Hurley said, which can still be manageable except that shortages for other job categories were mounting.

“In previous years, I felt like the leadership would hear us and there could be some changes,” Hurley said.

Bill Musick, interim CEO of Hospice East Bay, said his staffing-per-patient levels are among the highest in the industry, but he conceded the agency is on the edge of a cliff financially. He’s down several nurses, he said, because it’s hard to fill positions given a healthcare labor shortage. So he’s been using contracted traveling nurses.

“Medicare reimbursement rates have increased slightly over the years, but they’ve not kept up with inflation and the increase in wages,” Musick said. “And so year after year, we’re trying to figure out what we can cut in order to stay in business.”

Holding onto legacy traditions like grief counseling isn’t easy, Musick said, and he predicts consolidation. But a recent plan to merge Hospice East Bay with another nonprofit fell through.

People can have good experiences in for-profit hospice care and bad ones in nonprofits, said Jennifer Moore Ballentine, chief executive of the advocacy and policy group Coalition for Compassionate Care of California. In general, she said, “nonprofits have better quality metrics and are doing a better job,” but they are struggling to stay afloat.

“Frankly, it’s a mess,” Ballentine said. “I weep every day for the industry that was hospice because I think it really is in trouble.”

In the hospice industry, and in the nursing home field as well, the provider network became inundated by equity and real estate investors, among other opportunists without a shred of experience in healthcare. Given the inevitability of chronic illness and end-of-life care, they flocked like vultures, eager to cash in.

California has cracked down on hospice agency proliferation following The Times expose, but greater regulation and oversight at the federal level is imperative. Dr. Joan Teno, a Brown University authority on the industry, called for a raft of reforms in a JAMA article published in May.

“The need for change is urgent to ensure that frail, older people receive high-quality care and that fraudulent care is rooted out of the system,” Teno wrote. “Quality measures are important, but there is a need to improve integrity oversight. The time is now.”

Ballentine said anyone shopping for a hospice agency should take a look at the national hospice locator, which compiles data on agency quality. When I checked Bay Area listings, Hospice East Bay was at the top.

It’s worth noting that when I spoke to my mother’s nurse and her colleagues, they told me that despite their grievances, they want to stick with their employer.

“I moved here because I love this agency and think it’s really good,” said Eshelman, who’s from the Midwest. Unionizing, she said, was a way for employees to have a bigger voice in upholding the traditions of the nonprofit model.

The ultimate goal, she said, “is to provide even better patient care.”

Complete Article ↪HERE↩!

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20 must-watch movies about death

By Thomas West

Sadly enough, everyone must contend with death at one point or another. Given its ubiquity, it’s unsurprising that the movies have engaged with questions of death, dying, and grief, often with great effect. At their best, such films tug on the heartstrings and use cinematic storytelling to grapple with the broader questions that death inevitably raises. Just as importantly, for many people, films about death and dying are also invaluable tools for learning how to work through and process the sometimes overwhelming power of grief and loss.

‘City of Angels’

'City of Angels'

Nicolas Cage and Meg Ryan have astonishing chemistry in the beloved ‘90s movie City of Angels. Cage portrays Seth, an angel who falls in love with a human woman (Dr. Maggie Rice, played by Ryan) and, after sacrificing his immortality, learns what it means to be human. It hits many of the notes one would expect from a romantic drama of this sort, but it also does something a bit more: Using its story of an angel to ask the viewer to examine what it means to be human and how it is possible to make one’s peace with the inevitability of death.

‘Terms of Endearment’

'Terms of Endearment'

Shirley MacLaine gives one of the best performances of her career in Terms of Endearment, in which she plays Aurora Greenway, a woman with a close but complex relationship with her daughter, Emma. Things become particularly difficult when the latter develops terminal cancer, leading to some of the most emotionally wrenching and heartbreaking moments of the 1980s. It is anchored by the strong performances of MacLaine and co-star Debra Winger, and the film accurately captures how terminal illness can impact even the strongest of relationships, including the ones between a mother and her daughter.

‘P.S. I Love You’

'P.S. I Love You'

At first blush, the central conceit of P.S. I Love You —  in which a husband leaves behind a number of messages to his widow to keep her from being mired in grief — might seem ridiculous. However, one can’t help but admire the film’s commitment to this idea, which ends up being a sweet little melodrama (even if the critics disapproved). Though Hilary Swank was better known for her serious dramatic roles before this film, she does quite well as a romantic lead, and the film explores the difficulties of navigating love and loss.

‘Marley & Me’

'Marley & Me'

If there’s one thing sure to evoke tears, it’s a story about a dog. Perhaps no film pulls this off like Marley & Me,  the film based on the bestselling memoir by John Grogan. Though Owen Wilson and Jennifer Aniston are the putative stars, the yellow Labrador retriever Marley is the heart and soul of the film. Much like Old Yeller, the film is as heartbreaking as it is funny, but because of this, it is the ideal film for those who need to work through their own loss of a beloved family animal companion.

‘Soul’

'Soul'

The genius of the Pixar method of filmmaking lies in its ability to use the beauty of animation to explore weighty philosophical and emotional issues. Soul, for example, follows an aspiring musician who falls into a coma before he can realize his dream and tries to escape the inevitability of death. Like so many of the studio’s other beloved films, it doesn’t beat the viewer over the head with its messages; instead, it uses its gentle, soft story and the combination of beautiful animation and talented voice cast to guide them into a deeper understanding and appreciation of life and its inevitable end.

‘The Sixth Sense’

'The Sixth Sense'

These days, the works of M. Night Shyamalan have become quite limited due to his over-reliance on a twist ending. However, The Sixth Sense  remains one of his most notable creations, thanks to inspired performances from Bruce Willis, Haley Joel Osment, and Toni Collette. Moreover, its story about a boy who can commune with the dead retains its raw emotional power. Though it often veers into the realm of unsettling horror, it just as frequently ventures into more somber and thoughtful territory, asking what it means to grieve and what it means to move on from loss.

‘Meet Joe Black’

'Meet Joe Black'

Meet Joe Black is one of those unusual films that could have only come out in the 1990s, focusing as it does on a businessman who encounters Death who, in turn, wants to grasp the human experience. Things get more complicated once Death — in the form of a young man named Joe Black — falls in love with the businessman’s daughter. It stars some of the biggest names of the decade, including Brad Pitt and Anthony Hopkins. Though it is a bit overlong (it runs over three hours), there is still something remarkably touching and sensitive about the film’s engagement with the question of what makes one human.

‘The Fault in Our Stars’

'The Fault in Our Stars'

There’s something uniquely poignant and heartbreaking about films that focus on two young people who find love despite suffering from terminal illnesses. This premise is at the heart of the film The Fault in Our Stars,  which focuses on Hazel and Gus, two cancer patients who fall in love despite their bleak prognoses. In a less competent film, the story would have felt trite and cliche, but thanks to the memorable performances from Shailene Woodley and Ansel Elgort, it becomes instead a moving testament to the power of love to give meaning to a life.

‘Death Takes a Holiday’

'Death Takes a Holiday'

The Pre-Code era of Hollywood was a particularly fertile period for the industry, known for generating some remarkable and adventurous movies. For example, Death Takes a Holiday, as its title suggests, focuses on Death as he decides to become a human for a time. While in his mortal body, he falls in love with a mortal woman. This might sound a bit morbid, and it is, but somehow, the film manages to make it work, thanks in no small part to the performance of Fredric March as Death (and his human form, Prince Sirki).

‘The Lovely Bones’

'The Lovely Bones'

Though Peter Jackson is best known for his Lord of the Rings trilogy, he has also earned well-deserved praise for several smaller, more intimate projects. One of the most notable of these is The Lovely Bones, based on the novel of the same name by Alice Sebold. It’s a haunting and beautifully-told movie about a young woman who grapples with her own death and what to do from the in-between self in which she finds herself. The film deals with some heavy and powerful topics, but thanks to Jackson’s direction and Saoirse Ronan’s performance, it never becomes the cliche it could have been.
<h2″>’The Land Before Time’

'The Land Before Time'

The animated films of Don Bluth are rightly regarded as the more emotionally mature counterpart to Disney (for whom he once worked), and few ‘80s and ‘90s kids weren’t traumatized by The Land Before Time. The death of Littlefoot’s mother near the beginning of the film is heartbreaking in itself, but it is also wrenching to watch the poor young dinosaur have to come to terms with her loss. Nevertheless, Bluth’s genius lies in his ability to make death in all its devastation explicable and understandable for his young audience, giving them a means of working through the unimaginable.

‘The Bucket List’

'The Bucket List'

Morgan Freeman and Jack Nicholson are perfectly cast as Carter and Edward, two dying men who decide to start doing the activities they have wanted to try before they die. It’s an unquestionably sentimental movie, but this is precisely what makes it such a joy to watch Nicholson and Freeman portray two curmudgeonly but adventurous older men. It’s also a film that reminds the viewer of the importance of making the most out of the time that one has, whether it’s months or years.

‘Ghost’

'Ghost'

During the height of his career, the late Patrick Swayze was one of Hollywood’s biggest heartthrobs. He conveyed a mix of assurance, swagger, and sensitivity, which are very much on display in the 1990 film Ghost.  In the film, he plays Sam Wheat, a man killed only to return as a ghost. He then joins forces with a medium (played by Whoopi Goldberg) to reunite with his beloved Molly (Demi Moore). Its premise might be more than a little far-fetched, but somehow, the film makes it work, primarily because of the undeniable chemistry between Swayze and Moore, who manage to sell its outlandish premise.&

‘The Others’

'The Others'

Nicole Kidman is one of her generation’s finest actresses, and she performs remarkably in The Others. She portrays Grace Stewart, a mother desperate to protect her children from the malevolent entity that seems to have inhabited their house. As the film goes on, however, it becomes clear that not all is at all as it seems, and the film skillfully keeps the viewer guessing until the very end. The final twist is as heartbreaking as it is terrifying, and it allows Kidman to reach new heights in terms of her performance.

‘Love Story’

'Love Story'

Love Story is, in some ways, the exemplary 1970s romantic drama. Starring Ryan O’Neal and Ali MacGraw as a young married couple, Oliver and Jenny, who fall in love over the opposition of his parents and their significant class differences. Things veer into tragedy when it’s revealed that Jenny is dying from cancer, leading to Oliver’s reconciliation with his father. In a less capable film, such a story would be trite or treacly. Instead, thanks to a competent script, strong direction, and remarkable performances, it manages to be something stronger than the book on which it’s based, and it deserves its reputation as one of the best love movies ever made.

‘Steel Magnolias’

'Steel Magnolias'

If there’s one film that is the epitome of a tear-jerker, it would be Steel Magnolias. At the center of the story is the bond between Julia Roberts’ Shelby and Sally Field’s M’Lynn Eatento, a daughter and her mother who have to cope with the former’s failing health and her desire to start a family. The film is filled to bursting with great performances from the likes of Olympia Dukakis, Shirley MacLaine, and Daryl Hannah and, while also uproariously funny, it isn’t afraid to wear its heart on its sleeve, and this is precisely what makes it so enduringly popular and beloved.

‘The Farewell’

'The Farewell'

While Awkwafina might be best known for her many comedic roles, she has also shown dramatic range, particularly in The Farewell. She plays Billi Wang, a young woman who returns to China once she learns her beloved grandmother is dying. It’s a rich and textured film, particularly since the family refuses to tell the grandmother, Nai Nai, the truth about her diagnosis. This is the type of film designed to be a tear-jerker, but it also engages with several other issues, particularly concerning the conflicts that emerge between second-generation Americans and their first-generation parents and grandparents.

‘A Walk to Remember’

'A Walk to Remember'

For all that it might be more than a little trite and predictable, there is still something moving about A Walk to Remember.  After all, this is a film that focuses on a poignant teen romance between Landon Carter and Jamie Sullivan, the latter of whom is suffering from leukemia. It hits all the right notes, and there is no small amount of chemistry between Shane West and Mandy Moore. Just as importantly, the film also has some genuinely moving moments, particularly when Moore’s Jamie discusses her faith and what she thinks awaits her after death.

‘After Yang’

'After Yang'

After Yang, like the very best of science fiction, grapples with some of the biggest ideas that occupy the human imagination. In this case, the film uses the story of one family’s sense of loss over a robotic teenage boy to explore what it means to be human and just what, if anything, separates nonhumans from humans. It’s a remarkably subtle film, eschewing the bombast often associated with the genre. It also features some truly evocative and heartbreaking performances, particularly from Colin Farrell, who plays Jake, the father trying to bring Yang back to life so that his daughter can have a companion.

‘Coco’

'Coco'

As a studio, Pixar has always excelled at crafting exquisitely beautiful and emotionally poignant feature films, and Coco remains one of their best to date. When young Miguel wanders into the Land of the Dead, he finds that he must return home soon or risk being trapped there forever. While there, he has to grapple with some unfortunate truths about his family’s history and learn about the value of grappling with grief and loss. The film is the perfect blend of vibrant animation and poignant emotional truth, with characters one can’t help but love.<

Complete Article ↪HERE↩!

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Celebrating Death As A Part Of Life

— Near Provides Ease For End Of Life Situations

Near’s platform aims to ease the “End Of Life” (EOL) for everyone involved, including caregivers.

By Kaitlyn Dang

Everyone dies eventually. So why is our culture generally avoidant about the topic of death?

It’s obviously not fun to think about the end of life, especially when discussing it with people close to you. According to this 2018 study, almost half of surveyed people aged 40-64 didn’t feel comfortable discussing death with their parents, with a third actually preferring to discuss their weight over the prospect of death.

People generally find death and dying difficult to speak about because it can be awkward, sad and, well, frightening. But death doesn’t have to be scary or weird to talk about, according to Near Co-Founders Christy Knutson and Jane Butler.

Created from all-too-familiar experiences with providing care for dying family and friends, Near is a Raleigh- and New York-based online services platform dedicated to uplifting care providers and providing resources focused on end of life (EOL). Their mission is to make EOL care and experiences easier and accessible for not only the dying person, but also the caregiver and close family/friends.

“I noticed that [life and grief companies] are one of the most neglected industries, partially because nobody wants to talk about [death],” Butler said. “But it can also be devastating, hard and difficult overall, even if you don’t want to talk about it. I thought there should be more of a platform to modernize it and help it be a little more applicable.”

The two founders met when Butler began working as a creative designer for Well Refined, a creative marketing agency serving nonprofits and startups that the Raleigh-based Knutson co-founded in 2011. While they were working with some EOL clients, they recognized gaps in care that occurred from the initial point of diagnosis to after death, according to Knutson. With her background in working with EOL organizations and Butler’s in creative web design, their passions aligned and led to conversations to create a modernized, easy-to-use platform for EOL resources.

Near Co-Founders Christy Knutson (L) and Jane Butler

At the time, Butler’s fiance (now husband) was diagnosed with a brain tumor, which she said was a wake-up call to the fragility of life. Knutson’s familiarity with EOL dates back to when she was 10 years old, taking care of her grandmother with Alzheimer’s. After experiencing her grandmother’s passing and then living through more significant losses—such as the loss of her cousin, whom she considered a sister—Knutson dedicated her work to ensuring ease, comfort, help and validation for people going through these difficult times.

“There are some losses you never get over and [my cousin] was that for me,” Knutson said. “She’s very much in my work, she’s a part of what I do. [Jane and I] were acutely aware of and exposed to all of the holes in support for both the person who’s ill and for their loved ones. And those experiences are really the driving force behind everything we’re doing with Near.”

What Near provides

Near is centered around three components: caring, connecting and celebrating.

The “care” aspect is complemented with a personalized care registry. Similar to a wedding or baby registry, users can register gifts and experiences that will help provide comfort and reassurance while they’re going through either the caretaking process or their own EOL. The startup just released its Holiday Gift Guide, which provides tangible and practical care to people experiencing hurt during the holiday season.

Through the care registry, not only can users ask for gifts, but they can also link to personal fundraising pages and delivery services, list close family members’ information and their specific needs and add care requests—like moving boxes or picking up kids from school—because no one wants to deal with all of that when they have to take care of a dying loved one.

The “connecting” aspect of Near offers a range of different services the user might need during an EOL process. They include meal support, legal services, EOL planning, funeral and memorial planning and more—all to ensure that no one should be alone through these difficult journeys.

Finally, Near’s “celebrating” component could redefine death as another milestone in a person’s life. It almost sounds like an oxymoron when you are looking to celebrate death, but why does the end of a life have to feel and look negative? Currently in development, Near plans to uplift and offer legacy and funeral/memorial planning services, which include but aren’t limited to personalized funeral programs and curated legacy memorabilia.

Near’s offerings are for both caregivers and those going through their final days

“When it comes to designing funerals, they’re often not designed with the same level of attention to detail and personalization that reflects the person who has died,” Knutson said. “We believe that there’s a real opportunity to actually celebrate the person who’s died in a way that aligns with their interest, their values, their aesthetics.”

They also hope to uplift and eventually provide resources on “living funerals,” which is the idea of having a celebration of life before an individual passes away. These provide an opportunity for the dying person to benefit from having the people that they love all together in one room and providing them with a real form of connection before they pass.

“A wedding pulls everyone you love together in one room and that does not happen again until you die,” Knutson said. “And you won’t be here to experience it. What an unnecessary miss.”

Near not only organizes services into one hub for the user, but they also find resources and providers through official communities and organizations who are dedicated to EOL care above all, so the user doesn’t have to scour through potentially unhelpful sources.

“We want [Near] to be the centralized place where you can be proactive in caring or celebrating the life of somebody else,” Butler said. “I want people to have more clarity during their difficult times—something I wish I had more of—or at least have the awareness of that.”

For Butler and Knutson, they hope that a service like Near can bring ease and comfort to a difficult time. They want people to know that they’re not alone in experiences of serious illness, end of life, loss and grief, and that there are services and tools to help bring the community together and help communicate needs and desires. They understand that because of our death-avoidant culture, it can be hard to break out of that shell.

“It’s hard for us to name out loud to the people we love what’s most important to us,” Knutson said. “Someone at the end of their life will feel isolated and lonely because they are having feelings about their mortality, but it’s difficult to talk about that with the people who are closest to them, because they don’t want to cause them any extra pain.”

She continues: “And it’s such a tender, sensitive time. We really want to surround people at this time of their lives and help them feel that sense of community and care. Even as a death-avoidant culture, we are seeing changes taking place. Over time, the more comfortable we can get talking about our own mortality and the end of life experiences with those we love, the more awareness and support there will be that is necessary.”

Complete Article ↪HERE↩!

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Regulating Physician-Assisted Death

— Scholar analyzes the relation between federal regulation and assisted death initiatives.

By

Following the U.S. Supreme Court’s decision in Dobbs v. Jackson Women’s Health Organization, when the Court removed constitutional protections recognizing the right to abortion, debates around bodily autonomy have grown increasingly contentious. Notably absent in many of these debates, however, is reference to the highly divisive right to die.

According to a 2001 book chapter by Margaret P. Battin of the University of Utah, an absence of attention to the right to pursue physician-assisted suicide, or “active euthanasia,” obscures the “charged and polarized” nature of the right, with the very model of end-of-life issues in the United States at risk of substantial change.

Assisted death and other end-of-life issues gained traction in the late 1960s as medical patients and other disfavored groups fought alongside the proponents of the civil rights movement to pursue greater political and legal recognition. Battin claims that the debate over patients’ control of their deaths and the associated process of dying skyrocketed with the passage of the California Natural Death Act of 1976, which established patients’ right to determine, while still competent, the treatments they did not want to pursue as their condition deteriorated.

Proponents of assisted death initially pursued a populist strategy, Battin explains. Opponents, alternatively, partnered with existing organizations, including the Catholic Church and the American Medical Association, to speak out against the legalization of physician-assisted death with the apparent backing of authoritative institutions.

Battin contends that the involvement of these large institutions escalated the debate and led both sides to pursue state-level initiatives, ultimately shifting the focus of the debate from public opinion to state law.

Proponents initiated referenda in numerous states, including Washington, California, Oregon, Michigan, and Maine, seeking to allow physicians to provide terminally ill patients with lethal prescriptions upon request. Battin explains that, with active efforts from opponents to challenge the passage of state-assisted suicide laws, the referenda failed by narrow margins in all states but Oregon, where Measure 16 passed twice in 1994 and again in 1997, when the state enacted the Death with Dignity Act. Since then, 11 states have passed “right to die” laws.

When cases came before the U.S. Supreme Court, the Court ruled unanimously to uphold the constitutionality of state statutes prohibiting suicide assistance. Although courts seemingly ruled in the opponents’ favor, Battin argues that these rulings created a “laboratory of the states,” through which some states could legalize assisted death and others could prohibit it, thereby allowing policymakers to gain greater insight into the relative benefits and drawbacks of each approach.

Viewing the Supreme Court’s decision as inadequate and Oregon’s Death with Dignity Act as “the domino that would let many others fall,” Battin describes how opponents then sought to overrule state law by imposing new federal regulations.

After the federal Justice Department declined to prohibit physicians from using scheduled drugs for the purpose of assisting death, opponents unsuccessfully pursued congressional measures in the form of the Pain Relief Promotion Act of 1999 (PRPA). As Battin explains, the PRPA would have amended the Federal Controlled Substances Act to prevent the distribution of controlled substances “for the purpose of causing, or assisting in causing, the suicide or euthanasia of any individual.”

According to Battin, this proposed legislation would have directly challenged the Death with Dignity Act’s legalization of lethal prescriptions by targeting not the physicians or patients themselves, but the very drugs that would allow for a painless death. The legislation never passed, partly because, Battin contends, palliative care specialists testified that it would hinder the provision of effective pain relief in unrelated circumstances.

Despite the PRPA’s failure, it highlighted the vulnerability of proponents’ state-level initiatives to federal overrides. Battin claims that this revelation prompted proponents to seek alternative methods that could not be so easily eradicated by federal regulation.

This pursuit of alternative methods culminated in the creation of “NuTech:” new technologies capable of causing “easy death” without the assistance of a physician or prescription-limited drugs. Most importantly, Battin contends, this means these technologies are not subject PRPA-like restrictions.

This series of moves and countermoves—the passage of the Death with Dignity Act, attempted passage of PRPA, and creation of NuTech—has created an area of individualized medicine difficult to reach with regulation. Battin suggests that this transition toward an unregulated model of end-of-life medicine is problematic, concluding “it is not clear that this is a change for the better.”

Many centrist organizations share this cautious sentiment and have chosen to continue advocating more traditional legalization initiatives, despite the looming threat of oppositional federal regulation.

Some legalization opponents fear it will facilitate abuse by careless physicians and greedy health care institutions. NuTech may provide the perfect compromise for these opponents, Battin claims, because the decision-making power is vested solely with the patient themselves.

Although Battin fears the debate over assisted death will continue its historical pattern of escalation without appropriate regulation, she urges proponents and opponents alike to pursue conciliatory, rather than escalatory, moves.

Complete Article ↪HERE↩!

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I decided my sister should die after an accident

— Now I’m filming people’s last moments at Dignitas

Jon: ‘A Time To Die, my latest feature documentary, was not my idea, but when the production company approached me, I didn’t hesitate’

By Jon Blair

Fifteen years ago, I stood in a hospital room in France as doctors gave my much loved elder sister a sedative before removing the apparatus that was keeping her alive. A few minutes later she stopped breathing, and even as I write this all these years later, my eyes well up with tears. I miss her every day.

As she had gently trotted round a training ring, Hilary, then 66, had been thrown off the horse on which she was having the last of 10 riding lessons. She was wearing a helmet but the fall broke her neck at the highest point possible, her C1 vertebra. She survived, thanks initially to the teacher giving her mouth to mouth resuscitation until the paramedics arrived, but once she had been stabilised at the closest hospital, it became clear that she would require mechanical respiration with a tube through her neck for as long as she lived. In addition to being unable to speak, she would be tetraplegic, in all likelihood dying from pneumonia or some other infection within a few years at best.

Hilary, Jon’s sister, whose life support the heartbroken family decided to switch off

The doctors asked what we, her family who had gathered from around the world, thought she would want, since she was in no state to communicate her own wishes, and we agreed by a majority of three to one that what lay ahead for her was no life she would or could accept. We gave the go-ahead for them to switch off the machinery and in so doing, to end her life. This was not an assisted death as such, but there is no question that as a result of the decision we took that day, a few weeks later we would gather at a crematorium in north London for her funeral. In that sense, we killed her.

And here I am now, standing in a room at Dignitas, in an industrial estate on the outskirts of Zurich, filming the last moments of another woman’s life. It’s been a long, emotional journey and I can only hope it will be worthwhile.

A Time To Die, my latest feature documentary, was not my idea, but when the production company approached me, I didn’t hesitate.

I was aware of the ongoing debate around the contentious issue of whether the current law on assisting someone to die should be changed. As it stands, in England, Wales and Northern Ireland, helping someone to die can lead to a 14-year prison sentence. Last month, the Isle of Man took a step closer to becoming the first part of the British Isles to legalise assisted dying after its Parliament gave a second reading to an Assisted Dying Bill. In Westminster, Parliament has debated changing the law three times in the past decade, and in 2015, MPs voted against the legalisation of assisted dying in England and Wales.

Dan is getting his Dignitas paperwork in order – or as he calls it, ‘his get-out-of-jail free card’

Currently, if you help someone to end their own life, there will most likely be a police investigation. While the circumstances will be taken into account when determining whether it is in the public interest to prosecute, you will probably be interviewed under caution, your home may be declared a crime scene, and it can take months or even years of living with a jail sentence hanging over you for a decision to be taken. All of this at a time when you are probably in the midst of grief.

This has to be one of the most difficult, personal and emotionally trying programmes I have made in a 50-year career reporting on wars and making documentaries. It took me deep inside the lives and deaths of people wrestling with wretched choices. People like Dan, 47, a former music teacher now living with multiple sclerosis, who continues to compose music on his laptop using movements of his tongue and nose, which are picked up by his screen. Dan now lives back with his parents and is getting his Dignitas paperwork in order – or as he calls it, “his get-out-of-jail free card”.

We spent time with Di and Trevor, a couple whose plans for a far-flung retirement travelling the world were halted when Trevor developed motor neurone disease. Unable to speak or eat, and in constant pain, Trevor used an iPad to answer my questions. At one point, he held up the words: “Utter boredom, pain, both actual and emotional.”

Under the circumstances, it was really quite remarkable the freedom our contributors gave us to record their lives, and in some cases, their deaths, and I suppose that must say something about our having convinced them of our ethics, along with our promise to respect their wishes throughout, and our genuine concerns for their welfare.

We negotiated rare access with Switzerland’s best known assisted dying organisation, Dignitas, and through them we contacted their 1,300 UK members, some of whom had joined because they sympathised with the cause, others because they might want it as an insurance policy for use at an unspecified later date, and others because they had a more immediate desire for an assisted death. We considered how best to negotiate the ethical and moral dilemmas of what to show and what not to show, and in this respect we were guided not only by Ofcom’s strict regulations but more importantly, by our participants’ own wishes. 

Kim and Andy, a couple who met at her university in Manchester, got in touch and invited us to document their life since Kim’s diagnosis of progressive supranuclear palsy (PSP), a rare neurological disorder.

Kim, a fiercely independent woman throughout her life, was so appalled by her deterioration that she was adamant about wanting to travel to Dignitas. Now reduced to using words sparingly, she gave it to me straight: “I will take a drink. I will die – hopefully painlessly.” Right from the beginning, they were both extremely willing to have us follow them the entire distance, however it unfolded. Indeed, we genuinely didn’t know if Kim would change her mind until we filmed the family packing up the car. Even then she might have decided to come home, right up until the point she finally took the drink that would kill her.

I gained so much from witnessing the compassion, care and love between the people who allowed us in at the bleakest point of their lives. It’s not easy getting up in the morning to go to work knowing that in all likelihood there will be a moment when the tears simply can’t be stopped. So, why, at an age when most of my peers will have retired, did I do it?

I felt ultimately that the best service we could provide our audience with was to coolly and neutrally show examples of those most affected by the law as it stands now, while highlighting fairly and honestly what it is that those who oppose any change most fear.

Kim and Andy: both were extremely willing to have Jon follow them the entire distance, however it unfolded

And if we could pull back the curtain to show just what is involved practically with an assisted death, as well as what it is like if you don’t get one, or take matters into your own hands, that might just make a difference to their understanding of the issue.

Having heard from around 150 active supporters of assisted dying, we approached numerous opponents to hear their side of things. I was surprised by how few ultimately agreed to take part. The Archbishop of Canterbury was too busy, two noted palliative care professors at first seemed willing, and then essentially ghosted me. A high profile religious opponent who had organised numerous demonstrations against a change in the law was also too busy to talk to us. A GP who had sincere views against a change in the law based on her concerns for her largely Muslim patients was forbidden by the partners in her practice from giving us an interview. Another consultant was told by her hospital trust not to put her head above the parapet.

In spite of this, we wanted to let the audience decide which side they favour most. This debate is too often driven by anecdotes, in some cases quite horrific ones, which are brandished like weapons by the warriors embedded in the trenches of either side.

On this issue, you can’t have it both ways, but what you can do is try to walk a mile in another person’s shoes, and maybe that will help you decide what you think is right in a just society that cares for its citizens. 

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Finding Comfort and Peace with Hospice Care at End of Life

— What I find with some regularity is that people who are dying really do want, need and desire to talk about it.

By Rabbi Joseph H. Krakoff

Hospice — or as it is sometimes referred to — the ‘H’ word — can be a very scary, anxiety-producing proposition. And while that certainly makes sense, it is also a compassionate place to go for care that offers comfort, peace and love. As the end of life draws near, hospice is poised to meet every individual where they are at physically, emotionally, psychologically and spiritually.

What I have discovered over the last decade of visiting patients who have chosen hospice care is that even when they were reticent at first, they are ultimately grateful to have the tremendous support of a team of nurses, aides, social workers, clergy and volunteers who are there for them around the clock.

I can’t help but think back to an experience I had several years ago on a patient visit. I went to see an 85-year-old man who had been diagnosed with end-stage cancer. His adult children had made a unanimous decision not to tell their father that he was dying. On my first visit, the three siblings greeted me in the foyer of the man’s home to firmly instruct me not to tell their dad that he was on hospice. Naturally, I accommodated their request. Then, on my third visit, without warning, the man asked his children to leave the room because he wanted to speak to me alone.

He asked me to sit down next to him on the chair by the bed and said the following: “Rabbi, my family thinks that I don’t know what is going on. But I do! I recognize that I am dying and know I am receiving hospice care. I have lived a very good life. I am grateful and know my time is short. I have come to terms with my demise. But what I struggle with the most is that I really want to talk with my children about the fact that I am dying, but they won’t hear of it. Please help me help them. I need to get my affairs in order. Even more, I want the chance to say goodbye to each family member and express my gratitude and love for them. Rabbi, please help me. I am desperate.”

This is not an uncommon occurrence. What I find with some regularity is that people who are dying really do want, need and desire to talk about it. And so often, it is the hospice experience that plays an essential role in bringing families together to have these all-important conversations.

The word hospice itself originated in medieval times, a derivative of the Latin “hospes” meaning host or guest. Hospice as a concept appears initially in the mid-1800s to describe caring for dying patients and is based on the model created by Mrs. Jeanne Garnier, the founder of the Dames de Calaire in Lyon, France. The Irish Sisters of Charity adopted it when they created Our Lady’s Hospice in Dublin, Ireland, in 1879 and then again when they opened St. Joseph’s Hospice in Hackney, London, England, in 1905. It wasn’t until 1974 though that the first hospice was established in the United States.

Today, hospice is available through Medicare to critically/terminally ill patients who are declining and expected to die within six months, although they often live longer. The individual agrees to forgo any kind of aggressive medical intervention including curative treatment. The vast majority of hospice is covered by Medicare, though some is paid for by private insurance, Medicaid and the Department of Veterans Affairs. Hospice agencies develop a specific care plan for each patient to treat the symptoms of the person’s illness and are on call 24 hours a day, seven days a week.

One of the biggest misnomers about hospice care is that accepting a referral to hospice means that the individual is “throwing in the towel” and giving up on life. For this reason, it is not unusual that people may be discouraged by family members. But when the medical team determines that there is nothing else clinically that can be done and the terminally ill person is psychologically ready, hospice can be the best and most humane choice for reducing physical pain, maximizing emotional well-being and enhancing spiritual peace. It is not unusual to see someone on hospice actually begin to feel better due to the layer of care provided by the hospice team.  

In choosing hospice, the individual has made the decision, in the event of a crisis, not to go to the hospital or to call 911. Rather, all phone calls for help are made directly to the hospice organization. And if, for whatever reason, a person changes their mind, they always maintain the authority to revoke their hospice benefit and revert to calling 911, going to the hospital or resuming treatment.

While we can be certain that there will always be a modicum of discomfort about uttering the ‘h’ word, the truth is that hospice care wholly focused on comfort and peace is a true gift. At JHCN, we take pride in meeting each person where they are and thoughtfully addressing their whole range of needs in an honest, caring and loving way. Most of all, we provide the unique opportunity — through our social workers, clergy, volunteers and Life Enrichment specialists — that when the body can no longer be healed, we focus on the holy responsibility to assist in healing the spirit and the soul.

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A Guide to Dying

— We Talked to 3 Death Doulas

As Halloween, Day of the Dead, and All Souls and Saints Day have passed, we reflect on death and the afterlife. In fact, it’s all consuming. It’s impossible to not think of our loved ones we have lost or those we may lose when visiting grave sites or setting up an altar with candles.

By Penny Min

Whether religion comes into the conversation or not, death is a complex topic to discuss. The dying process is a mystery for most people, and shielding away from “the end” is an uncomfortable reality that many aren’t ready to face. Oftentimes, most people ignore it alltogether.

Avoidance, however, doesn’t always work when it comes to the inevitable — preparing for one’s departure from the world. And sometimes, people just need a little help, guidance, and comfort to ease into this next transition.

That’s why having a death doula assist during the latter stages of life is increasingly becoming a popular business and option for those heading toward the light.

A “doula” is a term commonly employed to describe someone who supports a pregnant woman during childbirth. The name is derived from the Greek word “doulđ,” which means “slave or female servant.” More recently, the definition of a doula has been expanded beyond the introduction to life and includes someone who provides support to those who are nearing the end of their lives.

What does a death doula do?

The tasks performed by death doulas can change depending on the needs of the person they are currently assisting. A death doula may concentrate on performing menial duties so that others who are close to the dying person can concentrate on spending meaningful time with them. They may assist with funeral rites and ceremonies, such as ensuring that the proper cultural or religious customs are observed during the dying process and that the deceased’s body is appropriately handled after death.

Listening to the dying person and others close to them while providing nonjudgmental emotional and spiritual support can be a significant portion of the death doula’s job description.

To learn more about this compassionate role, we asked three death doulas about their difficult but rewarding profession.

Interview questions have been edited for length.

Alysha Suryah, Baltimore

Photo by Elizabeth Kopylova

Q: What kind of training goes into being a death doula?

A: While end-of-life doulas have been around for years, the process for entering this space as a professional is somewhat unregulated. There are a plethora of opportunities to get out in the community to receive training in specialized topics, like rituals and communication, as well as the business side of this role; however, certifications are not required to provide this level of care to clients or even within your community — there are even opportunities to be a volunteer doula at hospice centers or other related organizations.

The only thing needed to be a doula is a willingness to provide compassionate care and a deep commitment to supporting individuals and their families during this potentially life-changing journey. It’s really a role rooted in humanity, and while formal training and certifications can certainly enhance your skills, the essence of being a death doula is the unwavering dedication to being there for others when they need it most.

Q: What are some of the challenges of the job?

A: One of the primary challenges of this role is the emotional toll it can take, even if one is vigilant about protecting their emotional well-being. Death is an intensely personal experience for everyone, and as an end-of-life doula, you have the potential to build deep, meaningful relationships with the individuals you serve. Bearing witness to their grief, pain, and loss, as well as the grief of their families following their passing, can be emotionally taxing at times. Sometimes, the relationships formed with clients are so close that you find yourself sharing in their sense of loss. It necessitates practitioners to have a considerable amount of mental fortitude to provide unwaveringly compassionate care consistently.

In addition to the emotional challenges, end-of-life doulas also encounter practical challenges. Effective communication, including facilitating difficult conversations, is a key aspect of the role. Irregular hours, often involving evenings and weekends, demand flexibility. Additionally, managing multiple clients simultaneously can increase the risk of burnout, emphasizing the need for self-care and support. Balancing the emotional demands and the practical challenges of the role, end-of-life doulas exemplify resilience in their commitment to providing support while navigating the complexities of end-of-life journeys.

Q: Is a death doula brought into hospice, or is it home care?

A: The professional role of a death doula is remarkably diverse, shaped by an individual’s strengths, experiences, interests, and the specific needs of their community. Death doulas can be found in both hospice and home care settings, and their responsibilities closely align.

In hospice settings, death doulas collaborate closely with hospice teams to provide comprehensive support to patients and their families. Their mission typically involves offering emotional support and guidance, contributing to legacy projects, and assisting individuals throughout the end-of-life journey. Their role seamlessly integrates within the hospice care framework. Conversely, some death doulas choose to operate within the context of home care. In this capacity, they provide support to individuals who have decided to receive end-of-life care in the comfort of their homes. Within this environment, death doulas can have a higher degree of flexibility compared to the structured relationships found in hospice settings. Their services encompass companionship, emotional and/or practical support, as well as guidance and education on end-of-life decisions. They also continue to provide support to clients’ families, guiding them through the dying process in a familiar environment.

Catherine Durkin Robinson, Chicago

Photo courtesy of Catherine Durkin Robinson

Q: What led you to become a death doula?

A: I’ve been doing death doula work for a long time. Raised Irish Catholic, I was at my first “Last Rites” when I was five, and thought everyone was raised to believe that death is a natural part of life. I was much older when I realized that most of my friends were shielded from death and quite frightened by it. So I’d been their “death buddy” for years. I was also a longtime volunteer for two hospice organizations. It was around the time of the pandemic when I realized my 30-year career as a political organizer was coming to an end. I wanted to continue advocating for people outside the political system (it’s gotten quite toxic out there.) Someone said that I was already doing this work, so I went back to school (University of Vermont) and opened up my practice.

Q: What are some of the biggest challenges in your line of work?

A: I think one of my biggest challenges is helping people to see death in a different light. We can be awed by its mystery rather than frightened by it. Another challenge is helping people understand that plant medicine, or psychedelics, can reduce anxiety and fear around end-of-life. People are afraid of that idea, too. So, I’m pioneering in this space and need to remember that and be patient as I go.

Q: I’m interested in your experience in the polyamorous space. Can you discuss this?

A: Yes, there are lots of challenges about the end of life for different families. This is especially true for non-traditional families, like polyamorous or anyone on the LGBTQ+ spectrum. As someone with training and lived experience in this realm, I’m happy to advocate for families and help healthcare providers to better support them when needed.

Laura Lyster-Mensh, Washington D.C.

Photo by Isabella Carr

Q: How long have you been assisting others as a death doula?

A: I have always been interested in the processes of birth and death. At my stage of life, there is more death, and I wanted to explore how to be a better caregiver, supporter, and mourner.

I started my training in late 2021 and have been volunteering with dying people and doing death awareness work since early 2022.

Q: How has becoming a death doula changed your perspective on death and dying?

A: I’m less afraid of dying. I am able now to separate dying from death, and that is quite helpful.

Q: Can you tell me about the death positivity programming at the Congressional Cemetery, where you are a death doula?

A: Congressional Cemetery is taking a bold and active stance on this programming. Despite a very busy calendar with so many activities going on, they make space for these special events and gatherings. It’s innovative, and the community of death-positive participants is growing and supporting one another. It’s an honor to be facilitating these programs.

People stop me, often, when I’m walking around the cemetery and say, “Aren’t you the death doula?” These are the start of some of the most interesting and enriching conversations I’ve ever had. It is amazing how much people want to talk but don’t know where to start.

  1. Professional Care Management. End-of-Life Doulas.

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