Category: Philosophy of Living

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Let’s talk about death

A growing number of medical schools are incorporating palliative care and end-of-life discussions into the curriculum. The result? Less suffering for patients and physicians.

by Amy Paturel, MPH

During her first rotation in internal medicine, Dawn Gross, MD, PhD, assessed a bone marrow transplant patient along with a group of fellow residents and her attending physician. When they left the young patient’s room, the attending said, “He’s going to die.” Two days later the patient was dead. 

“I remember thinking, ‘What did he see that I didn’t see?’” says Gross, who is now an associate professor in the department of palliative medicine at the University of California, San Francisco. Over time, she learned the science of illness and death and how to tell when a patient is dying. But what stuck with her was the fact that the patient had no idea he was going to die. 

Traditionally, a doctor’s primary job was to keep you alive, not discuss how you want to die — or even if you are going to. Now, the paradigm is shifting. Instead of employing extreme measures, doctors are increasingly learning how to stop interrupting death — and to talk about what that looks like. 

“Patients need to know what is happening to them, so they can plan,” says Tamara Vesel, MD, chief of palliative care and professor at Tufts University School of Medicine. “And doctors need to see illness and death as an opportunity for societal and personal growth instead of a societal and personal failure.” 

Unfortunately, data suggest most doctors feel ill-equipped to tackle end-of-life conversations. A 2014 study published in Palliative Supportive Care reported that more than half of respondents deferred conversations about advance directives to emergency room physicians. And in 2016, 88% of residents reported little to no training on end-of-life care during residency. But that is starting to change. 

“Doctors need to see illness and death as an opportunity for societal and personal growth instead of a societal and personal failure.”
Tamara Vesel, MD
Tufts University School of Medicine

Increasingly, medical school leaders are implementing end-of-life training that includes real-life practical skills. At the same time, more physicians are beginning to view end-of-life conversations as a medical tool that’s as important as any drug or device. The result: “Don’t die on my watch” is being turned upside down. 

A paradigm shift 

With advances in medicine and technology, Americans are living longer, often with ongoing or repeated hospitalizations. More than one quarter of all Medicare expenditures occur during a patient’s last year of life. But life-extending treatments have trade-offs. 

If faced with a serious illness, most people say they would prefer a natural death rather than exhausting all medical options, according to survey data. And more than two-thirds of people say they want to die at home, while less than a third actually do. Medical schools are uniquely positioned to help bridge the gap between what patients want at the end of life and what they’re actually getting.

“Just because we have the technology to prolong life doesn’t mean it’s appropriate to use it,” says Vesel. “The problem is, we’re so afraid of paternalism in medicine that we don’t use our medical knowledge and experience to sufficiently guide patients.” 

Instead, many doctors focus on presenting a smorgasbord of medical choices — “then we let the patient choose so we feel like we’re off the hook,” says Daniela Lamas, MD, a critical care doctor at Brigham and Women’s Hospital, Harvard faculty member, and author of You Can Stop Humming Now.

Yet, according to Scott Halpern, MD, PhD, MBE, professor of medicine at the Perelman School of Medicine at the University of Pennsylvania, the single most important determinant of the choices patients make is how doctors communicate. In a series of studies, Halpern and his colleagues discovered that seriously ill patients are more likely to select comfort-oriented care at the end of their lives if that was the default option they were randomly assigned. Similarly, when chest compressions, breathing machines, and feeding tubes were the default choices, they were more likely to select those invasive measures, too.

The goal for physicians then is to know their patients well enough to shepherd them toward the treatment path that best matches their values. “It is scary to ‘nudge’ a patient toward an end-of-life decision, but maybe that’s what it means to be a doctor — leading patients toward the decisions that are most consistent with their wishes,” says Lamas. 

That’s one reason insurers are paying doctors to have real conversations around end-of-life planning. The goal: to limit suffering for the patient and his or her loved ones — but also to provide a meaningful way for physicians to help guide patients through the natural process of dying.

A new wave of training

Currently, the Liaison Committee on Medical Education, the organization that accredits medical schools, does not require clinical rotations or courses on palliative medicine or end-of-life care. Part of the issue is that these skills “can’t be taught through lectures and demonstrations,” says Susan Block, MD, a professor of psychiatry and medicine at Harvard Medical School. “The only way to improve competencies is through field practice and feedback.” 

To that end, a growing number of medical educators are creating rotations within hospices, nursing homes, and assisted living facilities to give students and residents an opportunity to practice these skills. Institutions, including Tufts University School of Medicine, the Robert Larner, M.D., College of Medicine at The University of Vermont, University of California, San Francisco, School of Medicine, and others are weaving palliative care training into everything students do. “That’s a huge culture shift,” says Gross. 

To determine how best to train students to do this important work, Tufts University School of Medicine Dean Harris Berman has been meeting with the academic deans of four Massachusetts medical schools every six months since early 2017. The deans agreed upon a set of minimal competencies every medical student should have prior to graduation, and continue to work on next steps to meet and test these competencies.

As part of this effort, Tufts University School of Medicine plans to introduce a new curriculum in the fall of 2019. “Rather than a single class, a ‘Patient Experience’ thread — encompassing end-of-life and palliative care, advanced communication, and impact of health on patients and their families — will follow students through all four years of medical school,” says Vesel. 

The Larner College of Medicine, too, is equipping physicians-in-training to have these conversations. In addition to integrating palliative care and end-of-life training into all four years of medical school, third year students participate in a “bridge week” focused solely on hospice and palliative medicine. The 35-hour curriculum covers practical skills, symptom management, communication tools (with hands-on simulated training), and resilience, explains Stephen Berns, MD, director of education for palliative medicine and assistant professor of family.

Using tools developed by a nonprofit training organization called VitalTalk and Atul Gawande’s Ariadne Labs’ Serious Illness Care Program, Larner COM students learn how to share information, respond empathically, and drill down patients’ values. “It’s really about helping medical students and residents use their medical expertise to identify a treatment plan that matches patients’ goals,” says Berns. 

At the Perelman School of Medicine, Halpern lectures fourth year medical students about how patients, caregivers, and clinicians make end-of-life decisions. Their program also requires pulmonary and critical care fellows to participate in end-of-life communication training before beginning their fellowship. “Each fellow has to have a number of supervised conversations with real patients and family members,” says Halpern. “They’re also required to watch and listen to attendings engage in similar conversations.” 

Surveys consistently show that care providers who do this well can make a significant difference for patients. Research indicates that palliative medicine can reduce anxiety and pain, relieve symptoms, and improve quality of life and mood. It can also reduce spending, according to a recent meta-analysis of inpatient specialty palliative care.

Coming full circle

At the dawn of medicine, physicians were with their patients throughout the life cycle — and certainly at their death. Doctors viewed being at the patient’s deathbed as an honor, a privilege. Medicine is slowly returning to those values.

“We’re all taught a structure for taking medical notes. The first stop: chief complaint, abbreviated as ‘CC.’ My dream is that instead of the chief complaint, it’s ‘CW,’ or chief wish. What does the patient wish for? When we start to ask what’s getting in the way of doing that, it changes how we care for people.”
Dawn Gross, MD, PhD
University of California, San Francisco

Research consistently shows that doctors who are comfortable with end-of-life issues provide better care to dying patients than those who aren’t. “More and more clinicians are recognizing their professional and moral responsibilities extend beyond preserving life and include helping people whose life is coming to an end have their last days weeks and months be as comfortable and fulfilling and meaningful as possible,” says Halpern. 

Adds Gross, “We’re all taught a structure for taking medical notes. The first stop: chief complaint, abbreviated as ‘CC.’ My dream is that instead of the chief complaint, it’s ‘CW,’ or chief wish. What does the patient wish for? When we start to ask what’s getting in the way of doing that, it changes how we care for people.”

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Death-Positive Movement Fueling Hospice Growth

By Bailey Bryant

With more than 1.4 million Americans receiving hospice care every year, the demand for high-quality end-of-life care is only projected to rise in years to come. In Minnesota, a “death-positive” movement is to thank, experts say.

The number of hospice patients in Minnesota has tripled since 2000 and currently accounts for more than half of all deaths in the state, according to an article in the Saint Paul-based Pioneer Press.

While the aging population is growing rapidly, a broader cultural shift is also largely to credit: More doctors are encouraging and accepting of hospice, more mediums are portraying it positively, and more people are discussing and planning for end of life.  

“There is a huge death-positive movement happening now,” Christin Ament, organizer of Death Cafes in the Saint Paul area, told the Pioneer Press.

Death Cafes are just one example. Created in 2004, the concept is to offer a place for people to eat, drink and talk about death. Beyond Minnesota, thousands of death cafes are currently operating in more than 60 countries worldwide.

Similarly, the spike in hospice use transcends any one state. Hospice admissions and utilization in the U.S. continued to rise in the second quarter of 2018, according to the latest trends report from Atlanta-based analytics and metrics firm Excel Health.

Experts say the biggest reason for the shift is a change in attitude among doctors, according to the Pioneer Press. Traditionally, doctors have focused on lengthening life by whatever means necessary, opting for curative care as opposed to services more closely aligned to patient comfort.

“At times, you were fighting against what the body wanted to do,” Lindsey Pelletier, a hospice nurse who formerly worked in intensive-care units, told the Pioneer Press. “At times, you were doing something unnatural.”

But now, hospitals have entire teams focused on palliative care, and doctors respect that high-quality end-of-life care is sometimes best for terminal patients.

In addition to making patients’ final days more comfortable, hospice care has also been shown to save money by curbing overall health care spending. With health care costs rising at an unsustainable rate, hospice costs only a fraction compared to many alternatives.

For example, intensive care bills from hospitals can cost thousands of dollars per day, while daily Medicare reimbursement for hospice is $180.

Besides death cafes, the international rise of “death doulas” is also emblematic of the death-positive cultural shift. A type of end-of-life care expert, a death doula carries out a dying person’s plan for how and where he or she wants to die, while also providing spiritual guidance and holistic support.

Some hospice companies have even begun to work with professionally licensed doulas as a way to separate themselves from competitors. On a high level, baby boomers are partially to thank to the the shifting perception of death, experts say.

“My particular demographic is a take-charge-of-my-own-life kind of demographic,” Synthia Cathcart, Compassus’ vice president of clinical development and education, previously told Home Health Care News. “We see more and more openness about, when there isn’t another option given, really embracing that stay-at-home, quality-of-life conversation.”

Complete Article ↪HERE↩!

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Seattle, It’s Time to Talk About Death

There are many things we want to talk about with family and friends; death isn’t usually one of them. But from Death Salons to Death Cafes and dinners, there are plenty of signs in Seattle that this is changing

BY: Jen Swanson

There are a couple of ways to kill a dinner conversation. First, discussion of politics, a truism that is magnified in our divisive modern age. Second, religion, although this doesn’t often come up on this side of the Cascades. Finally, death, though most people would never consider raising a subject so morbid. In terms of topics to avoid discussing over dinner—or ever—mortality ranks high on the list.

However, one local entrepreneur and author, Michael Hebb, considers such conventional thinking dead wrong. “It’s like the opposite end of the continuum of talking about the weather or of a cocktail conversation,” says Hebb, whose new book, Let’s Talk About Death (Over Dinner), describes death as the most important conversation we’re not having. Such silence bears serious repercussions, and not only in terms of missed opportunities to connect with your loved ones. The book identifies end-of-life hospital expenses as a leading factor in American bankruptcies, Medicare patients outspending their total assets, and the sad fact that 80 percent of Americans die in hospitals, despite most wanting to die at home.

CONVERSATION STARTERS: The dinner table is the perfect place to gather and talk about death, says Michael Hebb whose new book helps foster these conversations

To Hebb, whose deep interest in death-related discourse led friends to throw a living funeral for his 40th birthday, one problem is that modern Americans no longer make time to eat together. “Just like we’ve forgotten how to pickle and can and preserve, we’ve also forgotten how to come together around the dinner table and have meaningful conversations,” he says, ruing the loss of this important “cultural engine.” The book and its companion website , inspired by a course Hebb taught at the University of Washington, offer an easy, DIY format intended to help readers host their own death dinners, with personalized cues and prompts that have fostered 150,000–200,000 dinners worldwide since launching in 2012. “There hasn’t been a single Facebook, email or Twitter response indicating a dinner went badly, which tells me that people know how to have this conversation,” says Hebb. “Maybe they’ve had a forgettable experience, but no one having a bad experience tells me that we’ve tapped into a basic human need.”

Hebb isn’t the only local focusing on this topic. From Death Salons to the locally produced Speaking of Dying film and companion workshops, there is a quiet movement in the area that’s giving voice to this once taboo subject. “This is a great region that’s having an interesting undercurrent conversation,” says Taryn Lindhorst, Ph.D., LCSW, a Behar professor of integrated oncology and palliative care social work at the University of Washington, who cites the Pacific Northwest’s counterculture vibe, antiauthoritarian bent and focus on experimentation as some of the reasons why.

Karuna Duval hosts Death Cafes which offer a safe place to talk about death

While Michael Hebb was restoring the lost art of breaking bread, the concept of discussing existential topics—like death—over tea and cake was gaining traction in England. The idea for Death Cafes was originally conceived in London in 2011, but quickly spread across the pond to North America and particularly to Seattle, where Death Cafes have cropped up in libraries, mortuaries, houses and actual cafés.

“It’s a safe place to talk about death,” says Karuna Duval, an ordained interfaith minister, hospice chaplain, certified death doula and one of many volunteer facilitators hosting Death Cafes in and around the city.

Duval has hosted Death Cafes in Washington and California, where she used to live, and estimates 7,200 Death Cafes have now taken place in 52 countries worldwide. “I just found it so fascinating because of the experience of so many people,” says Duval of attending her first Death Cafe in 2012 in California, following the deaths of her father, grandmother, partner and first husband. Such open discourse hadn’t been evident 10 years before, when Duval, inspired by a book titled Talking About Death Won’t Kill You, tried to organize her own workshops to foster end-of-life discussions and planning. The response then was lukewarm, but a decade later, the temperature had changed. “It felt like a relief,” says Duval, who was seeking to process all the loss in her life. “It was like, oh my gosh, I can finally be around people who aren’t like wigged out or weird talking about this stuff.”

There are all sorts of reasons why people don’t talk about death: A desire not to sound overly morbid. Fear of the unknown. A remove from death that has happened because so many people now die in hospitals, not at home. The superstitious notion that talking about death might hasten the event. The “go, fight, win” mode often prompted by serious illness. “In fact, the opposite is true,” says Hebb, describing how our cultural programming can work against us. “If somebody has a terminal diagnosis, having end-of-life conversations will extend their life. And that’s clinically proven.”

Our underlying “death anxiety” was the key focus of the late scholar, author and roving professor Ernest Becker, whose seminal book, The Denial of Death, won the Pulitzer Prize in 1974. “Ernest Becker was a cultural anthropologist who developed theories about how the uniquely human awareness of our mortality impacts our behavior,” explains Deborah Jacobs, executive director of the Seattle-based Ernest Becker Foundation, which was founded by a retired physician in 1993.

“I would posit that the death-positive movement is founded on Ernest Becker’s thinking,” says Jacobs of the growing swell of Death Cafes, death dinners and other efforts in recent years to reclaim the ways in which we talk and think about death, actions that echo the foundation’s longstanding efforts to bring our underlying awareness of death to the forefront.

To Becker, who saw death anxiety as a key driver in everything from religion and culture to our choices of partners and jobs, knowledge of our inevitable passing also drives each person to embark on an “immortality project,” or a quest to fill our lives with meaning. “Meaning has to last beyond our demise, our physical demise, so it could be making children, writing books, being good at your job, being a war hero, being a terrorist,” says Jacobs, noting Becker’s diverse appeal.

LIFELINE: Retired hospital chaplain Trudy James, through her company Heartwork, offers workshops that tackle numerous end-of-life issues

Trudy James, a retired hospital chaplain, also sees Becker’s theories at play in our current health care system. “The medical system became part of what was already the underlying denial of death,” says James, describing a system in which doctors don’t talk to their patients about death or dying. This marks a departure from James’ early career, which stems from the 1980s AIDS crisis, when patients knew they were going to die, openly discussed it and ultimately died more peacefully. “We live in this fantastic medical environment where we’re the beneficiaries of fabulous health care and have all these new procedures and new clinical trials and new treatments and new medications,” she says. “It’s caused people to believe they can live forever.”

James’ solution was to create a four-part series of end-of-life workshops and a documentary film, Speaking of Dying, which follows patients, families and medical professionals through various end-of-life options, including Washington state’s “Death with Dignity” law. Screened at churches, senior homes and other venues in Seattle since debuting at the Frye Art Museum in 2015, the film always draws attendees, including doctors and hospital chaplains who’ve never discussed death with their own families, says James, describing the documentary as an instant conversation starter. Meanwhile, the workshops, offered since 2008 through James’ company, Heartwork, offer participants a safe, intimate space to share stories, address questions and fears, complete advance directives and get familiar with hospice/medical procedures, such as CPR, which rarely works out in real life like it does in the movies. Doing this “real work of dying,” as James calls it, allows people to spend their final moments in peace with their family.

Death Doulas
These coaches help ease the end of lifeAs more people decide to die at home, death doulas, also known as end-of-life doulas or death midwives, guide patients and their families through the end-of-life process in a way similar to how regular midwives would assist with home births. Death doulas play various roles, from offering patients comfort and companionship in their final days to supporting the family by performing basic caregiving tasks, assisting with funeral planning and helping loved ones grieve. “It’s not to replace any of the components of hospice,” says Karuna Duval, a hospice chaplain who is also a death doula, of the two programs’ complementary functions. The International End of Life Doula Association (INELDA), founded in 2015, is just one of many organizations offering training and accreditation to anyone interested in joining this budding movement.

“If you haven’t had these conversations by the time you get to the hospital, the hospital is a terrible, terrible place to have them,” says Lindhorst, the UW professor, noting the ease with which hospitals can overwhelm patients who haven’t considered their options beforehand.

“It’s kind of like a conveyer belt,” says Lindhorst, describing a medical system whose default status is always set to treatment. “Once you step on it” and start down that path, “then treatment implies the next thing, implies the next thing, implies the next thing,” she says, noting how easily people can get moved through the system, in part because doctors don’t often have more than 15 minutes to explain various options. “It’s not anybody’s fault per se, but the system is so strong in this,” says Lindhorst, who saw early on in her career, which was also rooted in the HIV/AIDS epidemic, that the onus is on patients to be knowledgeable and empowered.

ACTING OUT: Playwright Elizabeth Coplan channeled her grief over the death of a family member into a a play, The Grief Dialogues which is also now a book of essays by 61 authors

The medical community could learn something from Elizabeth Coplan, a playwright who four years ago was struggling to cope with the death of a cousin, a freak accident that claimed a loved one and octogenarian in-laws so fearful of dying they refused to entertain any end-of-life discussions. “Some people write in journals,” the theater veteran remembers of her efforts to process the situation. “I’m going to write about my cousin’s death as a play.”

That exercise resulted in The Grief Dialogues, a series of short plays structured like The Vagina Monologues, but with actors exploring scenarios centered on grief, death and dying. The 90-minute production, which invites a grief counselor on stage to lead an audience Q&A after every show, immediately resonated with people, says Coplan, who credits the play’s passive, third-party presentation as a safe way to broach a taboo topic. “By sharing my stories that way, which you could just take as strictly theatrical or you could take it as entertainment,” people finally started to open up, she says. “Suddenly, people who were afraid to talk about death in general, or their own experiences with grief, all of a sudden wanted to share their stories.”

It was while applying for grants for her production that Coplan came across The Order of the Good Death, a Los Angeles–based group of funeral-industry insiders, academics and artists seeking to promote a culture of “death positivity.” She was especially taken by the group’s Death Salon, a weekend conference on mortality styled in the vein of an 18th-century gathering of intellectuals, so much so that she volunteered to bring the event to Seattle. “It was kind of like a Comic-Con for death,” says Coplan, recalling the Victorian-style hairstyles, makeup and dress on display during the sold-out affair, which took place early in September 2017, in partnership with the UW School of Social Work.

The event marked an important turning point for Seattle’s death community by uniting the diverse leaders of a fragmented movement that had so far existed on the relative fringe. Presentations were delivered by Chanel Reynolds, whose husband’s untimely death led her to found GYST (Get Your Shit Together), a website introducing others to the easily avoided world of wills and life insurance. Other presentations included a Death with Dignity panel moderated by Sally McLaughlin, executive director of End of Life Washington; an introduction to green burials; a film about Death Cafes; and an exploration of postmortem pet options with Caitlin Doughty, the 34-year-old mortician who founded The Order of the Good Death in 2011. Lindhorst, the UW professor, explained the natural signs and symptoms of approaching death, knowledge that’s becoming increasingly rare as fewer people die at home. Nora Menkin, executive director of The Co-op Funeral Home of People’s Memorial—the country’s oldest and largest funeral cooperative and also a Death Salon cosponsor—examined alternative death care. Katrina Spade, the founder of Recompose, described her pioneering efforts to transform human remains into soil. On the first night, The Grief Dialogues debuted to a full house at the UW’s Ethnic Cultural Theatre.

“People who are into this, they’re hungry for it,” says Jacobs of the Ernest Becker Foundation, describing the Death Salon as a “critical community builder,” which has a mission similar to the foundation’s of providing “a home” for like-minded seekers. Along with cosponsoring the event—and participating in Death Salons in Philadelphia and Boston—the foundation facilitated a lunchtime dialogue, allowing guests to break from the conference format and engage in a round-table discussion about death.

The success of the Death Salon conference is one indication of our region’s relative death positivity, which could be attributed to the sheer number of innovators working in this space. “The good-death movement, or the death-positivity movement, used to be defined by a couple of individuals,” says Hebb. “Now, there’s a huge community of thought leaders, practitioners and enthusiasts, so that’s the big change,” he says. “It’s a very multidisciplinary community of people considering these issues,” he says, pointing to the mix of artists, entrepreneurs, doctors and “blue-chip establishment folks,” like Cambia, an organization that runs an entire center devoted to palliative care at the University of Washington, feeding Seattle’s “unique influence and impact.”

Such attitudes could also be influenced by our diversity, speculates Lindhorst, who points to our large Asian population as an example. Religions originating in Asia, she says, “have a very different kind of orientation towards death,” contrasting the Christian biblical literalist interpretation of death with Buddhist movements flourishing on the similarly progressive West Coast. “In many Asian cultures, that idea of integrating daily thinking about death is actually part of the spiritual condition as opposed to the dominant avoidance that we have here in the United States.” Social media, which makes it easier than ever to find and share information, also factors into the death-positive movement’s recent swell.

“I think more of us are talking about death and grief in a very open way,” says Coplan, describing today’s conversations about death as less a “macabre, voyeur” issue and more of an academic one, even if society still has some way to go. “I actually give the millennials a lot of credit for this kind of chipping away of the stigma around talking about death,” says Coplan, who has two millennial sons and meets plenty more at her shows. “They are incredulous that their parents are getting so worked up and don’t want to talk about death,” she says, describing the younger generation’s lack of fear regarding what they know to be a natural eventuality. “We talk about sex, we talk about drugs, why don’t we talk about death?”

Why Talk About Death?

There are lots of good reasons to talk about death, and not only because such discussion helps us prepare for the inevitable. Completing your advance directive, a set of legal documents that detail your last wishes, and communicating its contents and location to loved ones clarifies your thoughts on life support and other medical interventions. (Advance directive forms are available from your physician or most health care organizations.)

Sharing your post-life wishes up front removes any guesswork involving the funeral, which, pending legislation scheduled for the upcoming January session in Olympia, could soon extend beyond the standard burial and cremation options to include alkaline hydrolysis, a water-based cremation also known as “aquamation,” and recomposition, a natural process that converts human remains into soil. Communicating the contents of your will and choosing an executor of your estate helps avoid surprises and legal pushback. Moreover, having these conversations beforehand alleviates stress on your loved ones, allowing them to avoid making difficult decisions under pressure and simply focus on their grief.

“The people who have had the conversation and at least know what the deceased person wanted, if they got a chance to talk about what was important to them, they’re much more confident in making the decisions and going through the process,” says Nora Menkin, executive director of People’s Memorial Association and The Co-op Funeral Home on Capitol Hill. “The people that tend to have the hardest times are ones that didn’t have any conversation, therefore there was absolutely no preparation for it,” says Menkin, whose organization, in addition to regular end-of-life planning workshops, furnishes each of its 70,000-plus members with end-of-life planning documents that double as excellent conversation starters. “We also want to make sure it starts the conversation with the family, because it does the family absolutely no good for Mom to say, ‘Oh, it’s all taken care of,’ but not tell them what she wanted.”

A Few Tips for Getting the Conversation Started

It’s never been easier to instigate conversations about death, at least if you have a copy of Michael Hebb’s new book, Let’s Talk About Death (Over Dinner). The book builds a solid case for why the dinner table is actually the perfect place to discuss death and dying followed by ideas and tips—including what to eat, whom to toast, and a menu of conversation starters—for hosting your own death dinner at home.

Prompts include, but aren’t limited to, the following thought-provoking questions:
• If you had only 30 days left to live, how would you spend it? 
• What is the most significant end-of-life experience of which you’ve been a part? 
• Do you believe in the afterlife? 
• Would you ever consider doctor-assisted suicide?
• If you were to design your own funeral or memorial, what would it look like?
• What song would you want played at your funeral? Who would sing it? 
• What does a good death look like? 
“It’s like a board game,” says Hebb of the death dinner series’ easily replicated structure, which is also available online. “The only thing we don’t provide is the food.”

Complete Article ↪HERE↩!

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The Death Doula

Traverse City doula Krista Cain guides people in … and out of the world

By Molly Korroch

“The human brain learns from stories,” says Traverse City birth and death doula, Krista Cain. As she sits with a mug of hot herbal tea at Cuppa Joe in the Village at Grand Traverse Commons, she explains her own story and the not-so-strange duality of her business, Sweetwater Doula, this way: Everyone experiences birth and death. Whether you’re experiencing them directly or through someone close to you, they’re an inevitability. They’re both also mammoth experiences marked by extreme emotion, hospital visits, and ceremony. Each of these experiences, she says, is a wave that smacks our bodies and minds repeatedly back down into the fray. Each is exhausting. But, she asks, “Why not ride [that experience] and let it take you in the direction you want to go? I want my teaching to be a surfboard.”

A doula is not a medical practitioner. A person working as a doula is not a doctor or a midwife; he or, more commonly, she is a guide.

Doula is a Greek word that was appropriated in the ’80s to describe a female assistant,” says Cain, but the definition has since expanded to describe someone who helps others during intimate emotional and physical events. Becoming a doula isn’t something with a hard start or stop, like a medical degree or a teacher certification. It’s common life experiences. “Walking people through life is a softer line,” she says.

Cain’s own line toward becoming a doula wasn’t a direct one. She originally hails from Southern California. She has a background in education and worked as a high school math teacher before coming to Michigan. But when she and her husband, who grew up in Traverse City, moved to northern Michigan in 2011, Cain, who was pregnant at the time, had a jarring resolution: “I’m not here to teach math. I’m here to teach people.”

Her transition into teaching about birth and death began with a certification in the Lamaze technique, which she still teaches alongside her workshops in birth and death. As she taught, she began to see that there were some holes in her personal experience with birth: She had never attended a birth other than her own. Her training as a birth doula began from a desire to offer even deeper knowledge and empathy to her clients.

Likewise, another life experience led her to expand her business to include not only guidance in birth but also in death. In particular, experiencing the death of her young goddaughter showed her how helpful it is to approach death in whatever way makes most sense to the person experiencing it. Death is certain, yet always feels unexpected.

Cain began training as— what she calls — a “death doula” in 2016, with an organization based in California called Bridging Transitions. The mother of one of its founders lived on the Leelanau Peninsula before she passed away in 2016. Cain was able to participate and assist the family during this time. She learned about both the scientific and social nature of death and dying.

Funeral Director and owner of Life Story Funeral Home, Vaughn Seavolt, worked directly with Cain during the funeral for a family who wanted to participate in all aspects of their father’s death. He said he sees a lot of value for both the person passing and the loved ones left behind.

“Having a death doula participate made it very meaningful for the family,” says Seavolt, “I think that it’s very rewarding and very healthy for families who want to participate as much as they want to.”

Cain says birth and death are extremely social experiences, and a doula helps with the social needs and pressures surrounding these major life transitions.

“A doula is a person who is skilled to walk beside you — your family, your partner — to meet your needs as you go through these changes,” says Cain. She will help you and your family in whatever way you need, from deciding what sort of service you want (do you even want a service?) to finding a place in the refrigerator for all the casseroles you’ve received.

“It’s not all about green burials,” says Cain. “You can do this with a body preserved in formaldehyde. You can do this with someone who’s been cremated.” On her website, Cain talks about how the ceremony surrounding the death of a loved one can be exactly what you make of it. It can take place at a funeral home, the hospital, a loved one’s home — whatever makes most sense for your situation. It can have as much or as little religion as is right for you and your family and friends. “There are religious traditions that guide the day, and there are ways you can walk alongside those traditions to serve the needs of the people who are carrying them out,” says Cain.

Most importantly, she provides both information and validation for your personal choices. In birthing and dying, what is right for one person might not be right for another, and that’s OK, Cain says.

Explains on of Cain’s birth clients: “It is also refreshing to hear people talk openly and without judgment about ‘taboo’ topics like postpartum depression and mental health counseling, miscarriage and infertility.”

Cain is adamant about empowering her clients through education. “We have a right to know about this stuff,” she says, “[both the] transformative experience of it and the nuts and bolts.”

A quick internet search reveals that end-of-life doulas are on the rise. There are lots of names for it: “end-of-life transition guide” or even “midwife of the veil,” but Cain prefers to keep things simple and bypass the poetry.

“Right now I straight up say ‘Death Doula.’ The reason I say that is because it’s really reallyclear. I don’t want to have to be that blunt, but we’ve done such a good job at covering it up.”

She’s working to uncover these topics, though she recognizes that it takes a fair amount of bravery to approach them openly. Cain often hosts workshops in both life and death. Who are they for? “Anyone with a life span!” she says, laughing. “If you’ve got a life span, you might at some point want to consider thinking about these things.”

Matters of Life and Death
Want to learn more about Cain, her services, or upcoming workshops? Check out www.sweetwaterdoula.com.

Complete Article ↪HERE↩!

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Doctor seeks to ease fear, anxiety and discomfort surrounding impending death

Dr. Bob Uslander with a patient

By Joe Tash

Dr. Bob Uslander’s No. 1 goal is to provide people who are in the final stage of life with a “soft landing.”

To Uslander, who runs a Del Mar-based medical practice, that means focusing on patients’ dignity, quality of life, and peace of mind as they approach their final days.

A former emergency room doctor, Uslander said he launched his practice – Integrated MD Care – about three years ago after noticing gaps in the health care system, particularly when it comes to caring for elderly patients and those with serious illnesses.

His solution was a model for delivering health care that creates a deep connection between caregivers, patients and their family members. The care team includes a doctor, nurses and therapists, and works with patients in their homes.

While the health care system, including palliative and hospice care, is very compassionate and works to make patients comfortable as their lives end, said Uslander, what’s missing is someone talking to them about their options for their final days, and how they want to experience their end of life.

“No one is talking to them about how they want to die, and what they want that experience to be,” Uslander said. “They miss the opportunity to have a truly empowered, transformational and meaningful end-of-life experience. The conversations aren’t happening.”

Before launching his practice, Uslander said he set out to research end-of-life care and see what was available What he found was a gap in the health care system, which he is trying to fill. He said he is not aware of any other practice like his.

“We’ve proven the model, that it works,” said Uslander, noting that he has seen the results in the improved quality of life for patients and their families.

In 2017, Uslander began caring for Jane Gillenwaters of La Costa, who suffered from pulmonary fibrosis, a condition that left her wracked with coughing spasms, gasping for air.

Jane’s husband of 62 years, Ed Gillenwaters, said the family watched as Jane deteriorated and lived with fear, anxiety and discomfort, knowing there was no cure for her illness.

Uslander took over her care in the final weeks of Jane’s life, and there was an immediate change. Not only did Uslander make changes that left her more physically comfortable, such as finding her a new, more effective machine to dispense oxygen, and taking her off of medications that weren’t helping, but he also talked to her about her end-of-life options and listened to what she had to say.

“His care restored her personal dignity. The more she talked about what she was thinking and feeling the more relaxed she became,” Gillenwaters said. “What he did was set her free from terrible fear and anxiety that is too often associated with impending death.”

The change in Jane’s outlook in turn lifted a “crushing emotional burden” from her husband and children, said Gillenwaters. When she died, Gillenwaters said, she was relaxed and peaceful, and no longer struggling for each breath.

Uslander has assembled a team of nurses, doctors, social workers and therapists, who can offer a range of services depending on the needs and desires of patients. Those services might include massage or music therapy, nutrition assistance or acupuncture.

The practice is considered a concierge service, said Uslander, meaning that doctors and nurses are available by phone on a 24/7 basis.

Patients pay a monthly fee ranging from several hundred to several thousand dollars, depending on their specific needs. The practice does not accept insurance, because Uslander said, “the low reimbursement and onerous administrative burden reduces the ability to provide excellent care.”

Because his practice is privately run, said Uslander, he has the option of reducing or waiving fees where appropriate. He’s also launched a nonprofit, the Integrated Lifecare Foundation, to provide education and raise money to pay for end-of-life care for those who can’t afford it.

Gillenwaters said he was so impressed by the care provided for his wife that he has since joined the foundation’s board of directors.

“Families need to know that such an approach is available to make the ending of loved ones’ lives comfortable and dignified,” Gillenwaters said.

For those interested in learning more about Uslander’s care and treatment model, he is scheduled to give a talk from 6 to 7:30 p.m. on Tuesday, Jan. 8, at the Solana Beach Library, 157 Stevens Ave., Solana Beach. More information can also be found on his website, integratedmdcare.com.

Complete Article ↪HERE↩!

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We Deserve More Than a ‘Good Death’

The case for demanding end-of-life care that meets our needs

By Amy Berman

If you are facing serious illness today or want to prepare for your own, or a loved one’s, illness in the future, you can tell your nurse, doctor and family that you want to talk about your wishes and what’s important to you. As we age, what matters most to us about our health care choices should become more important, not less, especially as we near the end of life. It’s important not just for us, but for those we leave behind.

Let me tell you a story to show you what I mean.

At 68, a woman we’ll call “Carmen” thought she was healthy — until she suffered a stroke and then a heart attack. Her husband, Eddie, a house painter, worried. How could they get Carmen the care she needed? How would they pay for it? Carmen told Eddie she wanted to avoid the hospital as much as possible, go to church and not be a burden to him.

Carmen represents the type of patient who nurses, doctors, social workers and other health care providers see every day. Yet, health care teams often serve people like her poorly. As a nurse, I’ve seen many people needlessly returning to the hospital over and over or spending their final days in an intensive care unit hooked up to machines they never wanted. But sometimes, when the right conversations lead to the right actions at the right time, the story has a better ending.

The Proactivity of Palliative Care

Fortunately for Carmen, her neighborhood community had a program that put together everything a person with a serious illness would need — proactively. This program drew together medical and nursing care with social work services to support the needs of the family grappling with serious illness. Carmen was relieved to learn that the program covered treatments to manage her pain and symptoms and also coordinated her care with her health care team. This is called palliative care.

The palliative care Carmen received was different than hospice care (available to people expected to live six months or fewer). Palliative care provides pain and symptom management until a cure is reached, or chronic condition management until death. Palliative care was an extra layer of support while Carmen got her other treatment.

Not only do people generally feel better with palliative care, they also live longer. Research shows that palliative care improves patient and family satisfaction, increases time spent at home and reduces the amount of time people spend in hospitals.

The World Health Organization even recognizes palliative care as “fundamental to improving the quality of life, well-being, comfort and human dignity for individuals” and has called for it to be integrated as an essential element of the serious illness care we receive.

When Carmen took a turn for the worse and required hospice, her care team listened to what mattered to her and helped her plan accordingly. When it became clear that she was getting worse, the team helped her remain at home and comfortable, just as she wanted. She had time to be with her closest friends, and died with her family around her.

And that’s the point. We deserve to live out our lives on our own terms.

What Matters to You?

The John A. Hartford Foundation is committed to helping ensure that members of the public understand they have a key voice in how care is chosen and delivered. The Foundation supports several groups that provide helpful resources for patients, families and clinicians. This includes Care.Lab, a collective of leading national experts who helped develop scenarios like Carmen’s to illustrate the possibilities; The Conversation Project, which offers free starter kits to help define your wishes and advance directive guidance. If you want to learn more about palliative care in your community, visit getpalliativecare.org.

Improving care for people living with serious illness requires palliative care and — when needed — hospice services.

People should receive the care they want and know how to avoid the care they don’t want. Families should feel supported and better equipped to help their loved ones. Clinicians should know their patients are receiving care that aligns with the patient’s goals. Health care systems benefit from the person-centered care their clinicians deliver. This is the care we should all demand.

Complete Article ↪HERE↩!

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A Gentler Death

The one thing everyone shares in life is that some day it will end. Pāhiki Eco-Caskets wants to shape a final resting place that is environmentally friendly for all.

By Matthew Dekneef

Like most people, Cortney Gusick never considered the prospect of purchasing a casket until she needed to select one for a family member. Eight years ago, her dad died from pancreatic cancer, and she was thrust into the death-care industry as a consumer. The most difficult part of making the funeral arrangements was finding the right casket. Gusick wanted something that reflected who her father was in his very full life: a Hawai‘i boy who cared about the environment and carried those values with him to Oregon, where he raised his three daughters. Ultimately, Gusick settled on a simple pine box from a small-scale, non-commercial business. “His body was going to biodegrade as it was designed to do, and it would provide some kind of nourishment for the earth,” Gusick says. She reasoned that the receptacle in which he was buried should do the same.

Common caskets are not earth-friendly. Nearly every model found in funeral home catalogs is manufactured with metal, paint, silicone, synthetic polyester fabric, and other non-biodegradable materials. That greener options aren’t readily available in the modern burial industry concerns Gusick, especially in a place like Hawaiʻi, where a reverance for one’s natural surroundings is part of daily life. After her dad’s death, she saw the metaphorical light at the end of the tunnel, and she came out the other side a casket builder. “This is what I want to offer for people,” she says. “For someone’s eco-legacy to be, ‘I did right by the earth.’”

Last year, Gusick started Pāhiki Eco-Caskets, a low-impact, environmentally sound casket manufacturer, in the backyard of her Mānoa Valley home. The venture was a 180-degree pivot from her ongoing job at the Silicone Valley-based company UserTesting as a test engineer in the amorphous world of software and mobile applications. “I had zero background,” Gusick admits. But the 37-year-old felt equipped for the intensely tactile field she was about to enter. “My dad taught his girls how to do everything, how to change our own tires, acid-strip a deck, lacquer the house’s wainscotings,” she says. She binged on online tutorials to gain a baseline knowledge of woodworking. “Between Dad and YouTube,” she says, “I felt like, ‘I got this.’”

Three months later, she teamed up with Logan Baggett, a friend she met in Oregon who had previously worked in Hawaiʻi’s solar industry, to help finesse Pāhiki’s offerings of 4- to 6-foot-long, 100 percent biodegradable caskets crafted from untreated, Hawaiʻi-grown wood. Soon after, the company attracted five investors and received a business loan from the Office of Hawaiian Affairs, which they used to buy hardwoods and build out inventory.

In Hawaiian, the word pāhiki means “to pass quietly, go lightly, touch gently,” a definition the duo strives to embody. Their caskets are made with reclaimed local albizia, monkeypod, mango, avocado, and Norfolk pine provided by Waimānalo Wood, a lumber mill that also houses their workshop. Pāhiki caskets range in price from $1,800 to $2,200 (less than the $2,400 median cost of a standard metal casket). In the circumstance that someone needs a keiki casket, Pāhiki provides it for a dollar.

Gusick considers every dimension of her industry. We’re trapped in a “death-denial culture,” especially in the United States, she says, which is obsessed with indefinitely preserving the deceased in ways that only benefit the living. For Gusick, the more grandiose style of caskets, which can cost upwards of $15,000, are more for the living than the dead. Those caskets “resemble pieces of high-end furniture that belong in this world, that belong in a house, and look like they’re meant to last over time,” she says. But the reality is they go into the ground, never to be seen again.

Pāhiki’s unobtrusive design aesthetic is in direct response to that. The final products—caskets that trade metal, paint, synthetic fabric, and lacquer for wood, non-toxic glue, muslin, and coconut-oil finishes—are crafted to allow the wood grain to shine in its most organic state. The caskets are stripped of sensational flourishes, but not of sentiment. Family members can opt to purchase the “collaborative option,” for which Gusick and Baggett affix biodegradable linen loops around the casket’s perimeter to hold flowers from funeral guests.

Pāhiki also has a keen interest in engaging with communities that have large Native Hawaiian populations on Oʻahu and neighbor islands. During community talk stories, Gusick presents information about Native Hawaiian burial rights and practices—which involve cremating a body in an imu, wrapping the bones in kapa cloth, and burying them in lauhala—and how to perform them legally. As a Native Hawaiian, Gusick feels especially called to apply a Hawaiian understanding of ʻāina to her work. “Hawaiians were the original environmental stewards,” she says. “I can rewind back through so many generations of people where this was always their charge, to take care of the land, and now I can do it in a way that’s modern.”

As long as humans are dying, the death-care industry, which sees profits in the billions of dollars, will remain open for business. Pāhiki’s niche market is a fractional percentage of that, but it is poised to grow as an aging population becomes more informed of greener burial methods. While Pāhiki’s prototypes are evolving, the emotional gravity of the caskets will always be the same. “Isn’t it so crazy that we’re responsible for this thing that is so intimate for a person we’ll never meet?” Gusick often thinks. “We’ll never get to look into their eyes, never get to shake and touch their hand. It’s this very special, unique thing that will only be crafted and given to them once.” It’s a heavy order, but Pāhiki hopes to treat it lightly.

Above Ground

People who work in the death-care industry bring the lessons they learn in the field into their daily lives in quiet but profound ways. Here is what Gusick and Baggett have learned from the dead about how to live better every day.

Be introspective “Most people should contemplate death; it shouldn’t be an afterthought,” Baggett says. “We know it’s coming, we know it’s part of life—it’s just a transition, in my eyes.” Thinking about death and removing its negative connotations can lead to a more present and purposeful approach to life.

Be clear about your wishes “Documentation is an act of love,” Gusick says. “Put it in writing and in thoughtful detail.” The way you live isn’t always enough to let loved ones know how you want to be buried.

Be nice “There are 20 million things I don’t know about a stranger, but there is one thing I can guarantee I know about them and that they know about me,” Gusick says. That is the inevitability of death. “In society, you can quickly and easily dehumanize another person in the way you talk about them off-handedly or the way you treat them, not thinking back to that completely timeless experience you know you share with that person. If you reverse-engineer that awareness when you interact with people, you can use it to make a kinder, more insightful connection with someone. Or, you know, just try to not be a jerk.”

Complete Article ↪HERE↩!