What is palliative care?

How is it different from hospice?

Palliative care tries to support a patient’s quality of life.

By

When most people hear the term palliative care, they look worried or confused. Introducing myself to patients and families as a palliative medicine physician, I commonly hear things like, “Does this mean I am dying?” or “I am not ready for hospice.”

I respond by acknowledging these common fears, but emphasizing that palliative care and hospice care are two very different things.

Hospice care is a Medicare-covered benefit for people whose doctors believe they are in the last six months of life, and who want to stop treatments targeting their disease – such as chemotherapy for cancer – to focus on comfort. In contrast, palliative care is appropriate for people at any stage of serious illness and is provided alongside treatments aimed at curing disease.

Palliative care specialists like me are experts in treating physical symptoms like pain and nausea. But just as important, we listen to patients’ stories and find out what is most important to them. We help make difficult treatment decisions and address the sadness and uncertainty that often accompany serious illness. We walk alongside patients and their families at a time that can be frightening and overwhelming, offering comfort, information, guidance and hope.

Palliative care recognizes that ethical and compassionate care for serious illness requires supporting the whole person in addition to fighting the disease.

Mounting evidence

The field of palliative care is still relatively new. In the early 1990s, research demonstrated substantial shortcomings in the quality of care for patients with serious illnesses. One 1995 study of nearly 5,000 people in the U.S. found that half of patients who died in the hospital experienced moderate to severe pain in their last days of life. More than half of the time, doctors did not know when their patients preferred to avoid CPR at the end of life.

These types of findings helped inspire the field of palliative care over the course of the 1990s and early 2000s. It began at a handful of hospitals as a specialty consult service working alongside primary teams – such as oncologists, cardiologists, surgeons and neurologists – to improve the experience of serious illness and ensure patients’ needs were met.

According to the State-by-State Report Card on Access to Palliative Care, which is compiled by researchers at the Center to Advance Palliative Care, only 7% of U.S. hospitals had a specialty palliative care service in 2001. Today, 72% of hospitals with 50 or more beds have a palliative care service, and palliative care specialists are increasingly available in other settings as well, including outpatient clinics, nursing homes and home-based programs. For example, it is now possible to see an oncologist for cancer treatment or a cardiologist for heart failure, followed by an appointment with a palliative care specialist who treats related symptoms such as fatigue and depression.

This growth is fueled in part by growing evidence of the benefits that palliative care provides for patients and families. Our research team at the University of Pittsburgh led a 2016 review of results from 43 randomized trials with nearly 13,000 patients – meaning that some patients received palliative treatment, and others did not. We found that palliative care was associated with significant improvements in patients’ quality of life and reductions in their physical symptoms one to three months afterward.

A woman in a hospital bed, in a hospital gown, smiles and pets a fluffy dog as another woman looks on.
Palliative care involves discussing what matters most to a patient’s quality of life, such as being able to care for their pets.

Importantly, palliative care was not associated with shortened survival, pushing back against a popular assumption that pursuing palliative care means “giving up” on fighting disease. In fact, one influential study found that patients with advanced lung cancer who receive specialty palliative care in addition to standard oncology care lived almost three months longer than patients who received standard oncology care only.

Palliative care is now recommended in many national guidelines as a critical component of high-quality care for serious illnesses. For example, in 2016 the American Society of Clinical Oncology recommended that all patients with advanced cancer receive dedicated palliative care services early after diagnosis, while also receiving treatment to target the disease. Increasingly, palliative care is viewed as an essential part of ethical and compassionate medical care.

Not the norm

One might suspect that an evidence-based service recommended by national guidelines would be available to everyone with serious illness. When it comes to palliative care, however, this is not the case.

Nationally, palliative care teams are vastly understaffed. Workforce shortages are projected to worsen in the future, as the U.S. population ages and therapeutic advances mean people can live longer with serious illness. Even now, with COVID-19 surges having caused as many as 154,000 new hospitalizations weekly and made other patients sicker because of pandemic-related delays in care, palliative teams are stretched to the limit.

Whether you or a loved one has access to palliative care may also depend on where you live and where you receive your medical care. According to the State-by-State Report Card, a hospital in New Hampshire is three times more likely to have a palliative care service than a hospital in Mississippi. Another recent analysis found that a not-for-profit hospital is two times more likely to have a palliative care service than a for-profit hospital.

A 2019 study found that palliative care consults were less frequent at hospitals that serve the largest proportions of Black and Hispanic patients. These structural inequities risk worsening known disparities in the care of serious illness.

Educating doctors

Patients and families can request palliative care, but palliative care specialists usually are brought in once the primary clinical team recommends it. Yet many physicians do not, either because they mistakenly equate palliative care with hospice or do not recognize the value that palliative care can bring.

One approach to expanding palliative care access is to enhance palliative training and support for every clinician who cares for patients with serious illness – an approach sometimes called “primary” palliative care. Another approach is to leverage newer care-delivery models, such as telemedicine, to expand the reach of palliative care specialists.

These solutions would require changing medical reimbursement and training models to make palliative care fundamental – for everyone.

Complete Article HERE!

Death, Dying and Suffering

— The Need for Medical Education Reform

by and

As she closed the door behind her, the palliative care geriatrician whom I (Meghan) was shadowing turned and said, “Remember, there are no difficult patients – just difficult situations.” We walked to our next patient, Mrs. C, who was suffering from congestive heart failure. All cures had been exhausted and she was tired of being at the hospital but was scared to enter hospice care. The doctor clasped hands with Mrs. C and explained that starting hospice did not mean giving up — it meant living life on her own terms in the time that was left. After these discussions, Mrs. C appeared more at ease and decided to pursue hospice care at her home.

During this and other palliative care consults, I saw how terminal illness could raise tough questions with patients, families and their providers. However, I also saw that working through these discussions could minimize suffering, give patients a sense of hope and allow them to make the most of their time remaining. Unfortunately, most medical students and doctors report feeling ill-equipped to have conversations about end-of-life care with patients. In this article, we will examine a provider’s role in validating the illness experience and describe how formal medical training on death, dying and suffering can equip physicians to provide better patient care.

According to medical humanist and physician, Eric Cassel, suffering can be defined as a state of distress that occurs when a person’s “intactness … as a complex social and psychological entity” is threatened. Suffering can occur when pain is uncontrollable, chronic or when its source is unknown. Patients may suffer and feel helpless when experiencing such pain due to a lack of perceived control or knowledge of how to relieve it. However, physical pain is just one aspect; there are also psychological, existential and social dimensions that can exacerbate suffering. I (Leonard) lived through this complex experience of suffering secondary to a debilitating illness when I was 19. I had an unusual Clostridioides difficile (C. diff) infection lasting several weeks which was so severe that it caused me to lose 15 pounds. During this period, I felt the uncertainty, vulnerability and alienation associated with being sick. Because it was so rare for a healthy, immunocompetent individual like myself to contract C. diff, it took a week and a half before my doctors were able to diagnose the medical origin of my suffering. To make matters worse, I felt that the doctors cared more about my atypical case of C. diff than about me as a human. Being solely viewed as an “interesting presentation of disease” invalidated my experience and caused me to suffer beyond the pathogenesis of the bacterial infection.

Physicians must work with their patients to identify the underlying and often complex sources of distress. Once a culprit has been identified, a physician can help the patient manage the aspects of distress which they can control, reframe their perceptions and interpretations of the aspects that they can’t control, and ultimately, reassure them that the distress will eventually end. In essence, physicians can empower patients to take control over their distress, thus reducing their suffering.

Regardless of their chosen medical specialty, physicians will inevitably confront death, dying and suffering during their education, training and career. However, due to the curricular gaps in our current medical education system, future physicians are underprepared to hold such conversations with their patients. Indeed, one survey of medical students at two prominent medical schools reported that students received “little or no explicit educational attention to the suffering of patients and their families” or for the clinical management of suffering. Instead, the students learned these clinical skills primarily by ad hoc observation of role models. While ad hoc observation can be a powerful learning method, it could be much more effective when used in tandem with more formal instruction. Not only does this unpreparedness result in suboptimal care, but it may even harm patients, who can suffer more from not feeling heard, validated or supported when discussing their illness with providers.

Medical school curricula should be formalized to teach students how to face suffering and death in clinical practice. We advocate for a longitudinal educational approach: first, incorporating curricula on suffering and death in didactic pre-clinical education will afford students the opportunity to learn foundational concepts, such as how to address suffering and openly discuss death, in a safe space. Secondly, to maximize student learning in the pre-clinical years, lived experience panels and group discussions following the panels may also prove useful; composed of people who have direct, firsthand experience with a particular topic, lived experience panels offer a personal lens through which to view the issue. For suffering and death education, lived experience panels may include patients with terminal illnesses (and their families), palliative care specialists and people living with chronic diseases.

At the University of Texas Medical Branch, we attended such panels during one of our first-year medical courses and found them to be profoundly insightful. These panels deepened our understanding of what patients and families had experienced and demonstrated how providers could better acknowledge and support patients’ needs. Early exposure to formalized curricula on suffering and death through lived experience panels will encourage budding physicians to inquire about their patients’ values throughout all stages of their lives.

Patients deserve to live their lives with dignity. From our experiences, we understand that suffering may interfere with this and cause patients to lose hope. Medical education must address death and suffering early so that such conversations are normalized amongst medical students by the time that they reach the clinical years. By incorporating more instruction on how to acknowledge distress and suffering in medical school curriculum and by learning directly from patients and families, future physicians will be able to work with patients to find the best balance between quantity and quality of life.

Complete Article HERE!

Terminally ill patients the first in B.C. to consume legal supply of magic mushrooms

“Having this approval, I feel like the luckiest person. I know a number of people with cancer who have died waiting for one.” — Thomas Hartle

Saskatchewan’s Thomas Hartle, 54, is one of five terminal cancer patients who will begin psychedelic therapy on Sunday, April 3, 2022, in Nanaimo. Hartle will use psilocybin to help cope with the anxiety surrounding his diagnosis.

By Sarah Grochowski

Five terminal cancer patients have been granted Canada’s first legal, domestic supply of magic mushrooms to treat their end-of-life anxiety.

One of them, 54-year-old Thomas Hartle, arrived at Nanaimo airport Saturday morning from his home in Saskatoon to participate in psychedelic therapy using psilocybin, the active ingredient in magic mushrooms, which he hasn’t been able to legally do since August, when his one one-year exemption from the Controlled Drugs and Substances Act expired.

By that time, his Stage 4 colon cancer had returned.

“Having this approval, I feel like the luckiest person. I know a number of people with cancer who have died waiting for one,” said Hartle, a father of two girls, who will undergo psychedelic therapy by palliative care physicians with Nanaimo-based health care organization Roots To Thrive.

“I really didn’t think I was going to make it this long,” he said.

In January, Health Canada restored the ability of doctors to request access to psilocybin after excluding the non-market prescription from its Special Access Program (SAP). Now terminally-ill patients can access the drug if it is administered in a clinical setting.

Roots To Thrive doctors had their SAP requests for the patients approved last week and plan to distribute prescriptions from Calgary’s Psygen Labs to the group Sunday as individuals of the group set their intentions for their trip.

Saskatchewan’s Thomas Hartle, 54, is one of five terminal cancer patients who will begin psychedelic therapy on Sunday, April 3, 2022, in Nanaimo. Hartle will use psilocybin to help cope with the anxiety surrounding his diagnosis.
Saskatchewan’s Thomas Hartle, 54, is one of five terminal cancer patients who will begin psychedelic therapy on Sunday, April 3, 2022, in Nanaimo. Hartle will use psilocybin to help cope with the anxiety surrounding his diagnosis.

Hartle, who first underwent the treatment in Saskatchewan by ingesting magic mushrooms he grew himself, has a goal of coming to terms with dying.

“When you get a terminal cancer diagnosis, it instils a sense of panic in you, you can’t sleep. I was consumed with terror about who will be there for my daughters when I die. Worry took away my ability to function and live,” he said.

“Magic mushrooms allowed me to calm the worries in my head, allowing my body to use my energy for healing instead and process those fears in a supportive environment. The positive effects last six months.”Hartle’s main concern is that others battling terminal diagnoses will not be able to access a legal supply of psilocybin as easily.“When Health Canada first announced that doctors could request psilocybin they said the special access requests will have a quicker response rate, a matter of days for emergencies. However, it took three months for my doctors to get approval.”

As of Friday, Health Canada said it had received a total of 14 SAP applications for psilocybin — of those, six have been authorized, four are under review and four were withdrawn by the physician before a decision was rendered.

“Requests to the SAP involving new products or new indications typically take longer to process because verifications must take place with the manufacturer regarding product quality and their ability and willingness to provide the drug,” the agency said in an email.“However, once access to a specific product has been authorized by the SAP, ensuing requests for the same drug can be processed much more quickly.”Previous to the SAP allowance, patients were only able to access psilocybin-assisted psychotherapy through clinical trials or Sec. 56 exemptions.

“It took me 103 days to get my first exemption,” Hartle said. “Now, more than 200 days later, I’m still waiting to hear back about my renewal application.”

Spencer Hawkswell, CEO of TheraPsil, a Victoria group that helps Canadians get access to psychedelic therapy, said British Columbians approved for exemptions have been forced to source the drug by growing their own or purchasing it from an unlicensed dispensary.“Patients do not know what is inside the substances they are having to purchase. It’s not as safe as it should be,” Hawkswell said.Hartle, who plans to fly home Wednesday for his 70th round of chemotherapy, said time is of the essence for the terminally ill.

“It hurts my soul to know that so many people may not be getting the help they need as soon as they need it.”

Complete Article HERE!

For end-stage dementia, Medicare can make hospice harder to access

The number of elderly Americans with the disease is projected to double by 2060. Many will need hospice care but the program will need reform to aid them, experts say

By Emily Harris

Janet Drey knows how hard it is to predict the future, especially the future of someone who lives with dementia. In 2009, a neurologist diagnosed her mother, Jean Bishop, then age 79, with frontotemporal dementia, a disorder that irreversibly damages the front and sides of the brain.

When Jean could no longer walk, speak or feed herself a year later, doctors confirmed that she had less than six months to live, Drey recalls. The prognosis fit Medicare’s definition of being terminally ill. That prognosis qualified her for hospice care, an interdisciplinary approach that prioritizes comfort and quality of life in a person’s final months.

The streamlined access to doctors, nurses, social workers and medications covered by Medicare, quickly became essential to Jean and her husband, and made it possible for them to continue living together on their 40-acre farm in rural Iowa.

But as can be the case with dementia, Jean’s decline was less precipitous than expected. When she was alive after six months, her physicians took another look at her condition. It seemed to be deteriorating, so they recertified her for hospice.

After several more months of care, Jean’s condition stabilized. She was still living with a progressive disorder, but Medicare’s coverage of her hospice costs was stopped because her eligibility for it was tied to her condition worsening.

Without it, Jean’s husband, Leonard Bishop, in his mid-70s at the time, was on his own most days to care for her: lifting her out of bed and placing her before her favorite south-facing window, helping her bathe and eat, and managing her pressure sores.

Inevitably, Jean’s dementia worsened. When Leonard found Jean unresponsive one morning in 2011, doctors deemed again that she had less than six months to live. She was re-enrolled. This cycle in and out of hospice occurred three times over three years.

Exhausted, Jean’s husband almost didn’t enroll her the third time, asking Drey and her siblings, “Well, if they’re just going to discharge us again, should I even do this?” Jean died almost exactly six months after her third admission.

Jean’s experience isn’t an outlier.

Based on a recent study, Medicare’s hospice regulations are not working as intended for many people with dementia, says Elizabeth Luth, a sociologist at Rutgers University who studies end-of-life care. According to her study of 3,837 hospice patients with dementia, about 5 percent are pulled from hospice when their condition seems to have stabilized.

Plus, the number of Americans over 65 with dementia is projected to more than double to 13.8 million by 2060. Many will need hospice care. “It’s worth asking the question, ‘Should we reevaluate?’ ” Luth says.

The Centers for Medicare and Medicaid Services (CMS) has been introducing new payment structures, pilot programs and quality metrics to address weaknesses in the hospice admission criteria. None of their solutions, however, have modified the six-month benchmark — that would require a change in law, according to a CMS spokesperson. With no amendment to the six-month rule in sight, hospice and palliative care workers are pushing for a different end-of-life model for people with dementia.

Congress created Medicare’s hospice benefit in 1982 to provide dying patients with medical, social and psychological support. To keep costs of the new benefit down, it capped the definition of terminal illness at six months to live to balance money spent on hospice care with expenses saved from avoiding costlier hospitalizations that often occur at the end of life.

For a couple decades, the six-month benchmark worked. Most early hospice patients — over 75 percent in 1992 — had cancer. Doctors can predict with relative accuracy when a patient with advanced cancer has less than six months to live.

Today, the average hospice patient is very different. About half have dementia, according to a study published last year. And as Jean’s family experienced, predicting when a patient with dementia has only six months to live is difficult.

“Dementia clearly does not fit the disease trajectory of 70s cancer patients,” says Joan Teno, a health services researcher and former hospice medical director

Theoretically, up-and-down declines and incorrect prognoses shouldn’t be a problem. Doctors can recertify hospice patients who are alive after six months as still terminally ill, as Jean’s physicians did during her first hospice stay, and Medicare will continue to reimburse for that extra time.

But reality can be more complicated, says Krista Harrison, a health services researcher at the University of California at San Francisco. Hospice programs with too many patients receiving care for more than six months raise some flags for Medicare, and are sometimes audited as a result — an expensive, time-intensive process. If an audit uncovers seemingly inappropriate use of the benefit, the hospice might have to repay money that Medicare reimbursed, which can run up to millions of dollars.

Sometimes, people with dementia can stabilize while they are receiving hospice services, as Jean did. “For those people living at home, there’s not really any other services out there that provide the same level of support,” says Lauren Hunt, a former nurse practitioner who now researches end-of-life care at UCSF.

So when patients enroll, they may finally have the care they needed all along and their condition can get a little better or at least stabilize. This can then make them ineligible for Medicare support going forward.

In the end, Medicare’s penalties leave clinicians and hospice organizations in what Harrison calls “an impossible moral quandary,” with the needs of their patients with dementia on one side and Medicare’s six-month regulations on the other.

“We need to update the payment models, and especially hospice, to really reflect this changing disease trajectory of an aging society,” Teno says. “What I’d rather see is some flexibility.”

CMS began to update its payment models in 2016 after years of warnings from Medicare’s advisory body that some hospice organizations were using the benefit for financial as much as for care reasons.

The payment reform has Medicare reimburse more (about $200 for routine care) for the first 60 days a person is enrolled in hospice and about $160 after that, until care again intensifies at the end of life. That scheme aligns better with hospice’s U-shaped pattern of costs. Before that, when Medicare paid a flat rate, it was easier for financially driven organizations to enroll patients with unpredictable declines too early and make extra money during their lengthy middle periods.

Another new model started on the first day of 2021. It’s one that applies to people enrolled in Medicare Advantage, the insurance people over 65 can opt for instead of Medicare. This pilot program is meant to smooth fragmentation in hospice care, previously covered only by Medicare, for the roughly 40 percent of older Americans with Medicare Advantage.

Beginning this year, Medicare also introduced a quality metric that tracks the number of people unenrolled from hospice, giving CMS another way to keep tabs on organizations with too many people unenrolling from hospice.

Without a change in the six-month rule, however, many end-of-life care experts say Medicare should come up with a new rule to provide palliative care for people with dementia that focuses on pain and other quality-of-life issues, and that is tailored to the person’s needs earlier in their illness. More intensive hospice services would be added later.

“What makes sense is to have a different type of program that allows for a larger prognostic window, but that would also reimburse less than hospice does,” says Claire Ankuda, a palliative care physician and researcher at Mount Sinai.

Jean Bishop’s family agrees with that.

Several months into 2013, she had qualified again for hospice, her third go-round. A week before Christmas, the 83-year-old mother of 10 died, surrounded by her husband and children, four years after she had been diagnosed with dementia.

Because Jean’s disease unfolded slowly, it would have been helpful for her and her husband to have had consistent support from the start that eased into hospice care, Drey says.

Instead, Jean and her family weathered abrupt gaps at an already vulnerable time. For Jean’s husband, Leonard, one of the most devastating parts was the questions that would go unanswered between enrollments without the advice and help of hospice specialists: What the end would look like, and whether he would know what to do for Jean — and be able to do it.

“He had to work out in his head a scenario so that if something happened and it was a crisis, he knew how he would act,” Drey says.

During the periods that Jean was ineligible for hospice, he knew he would have to handle those crises alone.

Complete Article HERE!

Lively conversations about dying

by

Death Café opens up difficult dialog

Things at the Death Café were cheerier than one might think. There were tears, of course, but there was also laughter, regret, gratitude, questions and advice. Above all there was wonder and awe — a sense of reverence for a process that all of us will experience, yet few of us talk about.

Longtime Mazama resident and “death doula” Bo Thrasher recently collaborated with Methow at Home to host a Death Café, inspired by the model developed in England in 2011 by Jon Underwood and Sue Barsky Reid. Based on the ideas of Bernard Crettaz, a Swiss sociologist and anthropologist who debuted the first “café mortel” in 2004, a Death Café is a social gathering designed to stimulate frank conversations about taboo subjects, including death.

Thrasher’s own interest in becoming a death doula — a person who helps others navigate end of life assistance from logistical, spiritual, emotional, physical and practical perspectives — stems from the hospice workers who helped her mother die peacefully at home. Through her work as a death doula, Thrasher “is striving to help make the idea of dying and death a natural part of our culture within the whole life cycle.”

“When my mom passed away I was amazed by the beauty and care with which she was treated by hospice,” Thrasher said by way of introduction in the Death Café. “I decided I wanted to work with people in the end of life. We’re all born and we’re all going to die. I wanted to be a part of that, to think about how we think and talk about death, and how that affects life and how we want to live.”

Reclaiming the word “doula” from its origins — “doule” in ancient Greek means “female servant” — Thrasher and other death doulas around the globe are reclaiming the process of leaving life behind, shuffling off our mortal coils not in sterile environments attended by strangers but in sacred spaces and homes, surrounded by loved ones.

Thrasher said that she and her fellow death doulas are “non-medical professionals who advocate for the dying, give comfort and emotional support, work with hospice and medical professionals, and work with aftercare resources like funeral homes and cemeteries.”

Opening the conversation

A Death Café doesn’t have an agenda or a theme; it’s designed simply to open the conversation about death. And like any gathering without a theme, the recent Methow Valley Death Café covered a range of topics. Some attendees shared their own stories with death, ranging from a “horrific experience” of removing a father from life support to getting to hold a mother’s hand while she took her last breath to reminiscing with siblings while sorting through parents’ belongings after both had passed.

While the overwhelming message from those who have experienced the death of a close loved one and who have had to navigate dealing not just with the body of the deceased but later the possessions of the departed is to “talk about end-of-life concerns so you’re on the same page before death arrives,” suggestions were intensely personal and represented opposing perspectives.

One attendee noted the gratitude she felt for her father’s attention to his possessions before his death; his children will not be left with a house full of things to distribute and dispose of. Another agreed: “When you die, you’re already leaving your loved ones with a lot of stuff. If there’s anything you can do to make it easier for them to say goodbye without overwhelming them, you should do it.”

But others said that going through their parents’ possessions after they died was cathartic and bonding: “It helped us acknowledge the end of an era,” one said. “We had so much fun putting stickers on things that we wanted in my parents’ house,” said another. “It was just another way of connecting with my siblings.”

Another participant shared the experience of attending a funeral that had been planned by the deceased prior to death, down to the music, the speeches, and the readings. “Every bit of it was orchestrated, and it seemed stilted to me. People weren’t as engaged as they would have been had they had a part in planning it,” she said. “It made me rethink my own eventual memorial service. I have this favorite song that I always imagined would be playing. But maybe that song won’t resonate with the people there. Maybe part of dying is letting go, leaving it to others to decide how best to celebrate and grieve with those who are left behind.”

The same participant shared that at her mother’s funeral, an aunt told her “Honey, life is for the living; you gotta move on.” She took that to heart and it reframed her thinking, not just about her own funeral, but also where she might be laid to rest.

“My family always does cremation and spreading ashes and my grandparents are in urns in a fancy mausoleum in Seattle,” she said. “But I was recently at Beaver Creek cemetery and I was very moved — it was such a lovely place to go and contemplate someone’s life.”

“Cremation is quite toxic on the environment,” she continued. “I had always thought that was the best option, environmentally, but now I’m more interested in a truly green burial.”

“Ashes to ashes, dust to dust,” another participant said. “I have an arrangement with a carpenter friend to make me a wooden box. I want to return to the earth.”

She was echoed by another: “It’s important to me that all of my molecules go back into life, and that doesn’t happen in a vault.”

Expanded choices

Although options for body disposition are fairly limited in Washington state, the range of choices has expanded to include aquamation (biocremation using lye and heat) and natural organic reduction (human composting). The People’s Memorial website (peoplesmemorial.org) offers educational workshops that provide information about avenues for body disposition, as well as other death-related challenges like transporting bodies and coordinating at-home funerals.

The aftermath of death is a necessary part of the process, not for the deceased but for those left behind. Organizing memorials, laying the body to rest, combing through possessions, wrapping up paperwork — all can be cathartic and help bring closure. But advance planning not only makes this process smoother, it also helps “spur good thinking about how we want to live our lives,” one participant said.

But not all of the dialog at the Death Café centered on the logistics of death and the legal and administrative consequences. At the core of the conversation was the agreement that journey between life and death remains mysterious, unknowable. Thrasher said, “Like birth, there’s this moment where you’re not really here or there, you’re between. It’s important to recognize those moments.”

Several participants described their parents’ passing — all of whom were surrounded by family and friends — as “unbelievably beautiful,” “fairytale,” “profoundly loving,” and “wonderful.” One participant said that she felt so fortunate to have experienced both of her parents’ deaths at home that she would like to help others have similar experiences. “We took back childbirth,” she said. “Now we need to empower people to take back death, to take control of the end of their lives.”

“There’s something about the last breath,” said another participant. “It sounds strange, but that last exhalation is a magical thing. It’s the transition to the unknown, the unknowing. It’s just fascinating.”

Complete Article HERE!

“In Love: A Memoir of Love and Loss” — A Brave and Heart-rending Story

This is a profoundly disturbing memoir about a subject that hits close to home for many readers.

By Helen Epstein

Even readers familiar with novelist Amy Bloom’s conversational, ironic, sometimes elliptical style and her unconventional choices of subject matter may be jarred by the subject of her new memoir – an account of the assisted, aka accompanied, suicide of her 66-year-old husband Brian Amiche.

Over the past decades, there have been many books — fiction and nonfiction — by writers who have decided to end their own lives (usually by the legal means of voluntarily refusing to eat or drink) or writers who have assisted others, but assisted suicide is still a dangerous literary subject. Assisting a person to kill themself is considered murder in all American states but California, Colorado, Oregon, Vermont, Montana, New Jersey, Maine, Hawaii, Washington, and the District of Columbia. All require that the potential suicide be a resident, assessed by two physicians as having only six months to live, and able to express the wish to die, orally and in writing to two local physicians.

Apart from the emotional stress of making this decision, on a timetable determined by others, in an environment not helpful to people who wish to end their lives, there is a possibility that relatives and friends, even strangers who find suicide immoral, may take legal action against anyone who enables it. At a time when Right to Lifers in some parts of the U.S. are suing physicians who perform abortions, this is not a minor concern. Even though most of us know someone whose partner has been diagnosed with Alzheimer’s — I currently know four such people — and we hear reports of the long deterioration between diagnoses and deaths from their caretakers, few of us know how the Alzeimer’s patient wants (or once wanted) to end their life. Bloom’s memoir is a rare book that aims to tell us, a memoir as well as a guide.

It begins quietly, on “Sunday, January 26, 2020, Zurich, Switzerland. This trip to Zurich is a new, not quite normal version of something Brian and I love: traveling. Road trip, train ride, ferry ride, airplane anywhere.” Then, after we learn they’re settling down in Business Class en route to Switzerland, the narration swerves. “Dignitas’ office is in Zurich, and that’s where we’re headed. Dignitas is a Swiss nonprofit organization offering accompanied suicide. For the last twenty-two years, Dignitas has been the only place to go if you are an American citizen who wants to die and if you are not certifiably terminally ill with no more than six months to live. This is the current standard in the United States, even in the nine right-to-die states plus the District of Columbia, about which many older or chronically ill Americans harbor end-of-life fantasies and which I researched, at Brian’s direction, until we discovered that the only place in the world for painless, peaceful, and legal suicide is Dignitas, in the suburbs of Zurich.”

In August of 2019, two months after he turned 66, Brian Ameche, oldest son of a large Italian-Catholic family, architect, fisherman, and Yale football hero, was definitively diagnosed with Alzheimer’s. Bloom, whom he married in 2007, had suspected that something had been affecting his behavior since 2016. Now, after an MRI and a second neurology consult, that something is diagnosed as Alzheimer’s disease. In Bloom’s account, “It took Brian less than a week to decide that the ‘long good-bye’ of Alzheimer’s was not for him” and less than a week for Bloom to find Dignitas, after he asked her to research and organize a good death. The epigraph to this book is: “Please write about this,’ my husband said.”

In Love: A Memoir of Love and Loss is a testament to the tortuous process of devising a good death in the United States in the 21st century, and going through with it. Bloom takes the reader through the stages, from her first observations of her husband’s changes that she ascribes to middle-age: forgetting names, repeating questions, a new irritability, new likes and dislikes, his handwriting, appointments and medications confused, inexplicable problems at work. Then being fired from a job for which he had recently been enthusiastically hired to more obvious signs of illness. By 2016 — only nine years into their marriage — she has become more alarmed and begins to research the differences between mild cognitive impairment and true Alzheimer’s disease on websites and videos. But along with worrying and calculating her partner’s probable timetable, she is still “minimizing” and “normalizing” and keeping her real thoughts secret from almost everyone she knows.

One of the attractions of Bloom’s fiction is her psychological insight. She was a psychotherapist before she became an author and she tells this story as clearly as a case history yet in a voice as seductive as her best fiction. Her account of how she and Ameche met might be mistaken for one of her short stories: “September 2005, Durham, Connecticut….Brian and I fell in love the way some middle-aged people in unhappy partnerships and in small towns do: liberal Democrats in a Republican town, ethnic types in a town full of Northern Europeans, opinionated loudmouths… He said, What’s your family like? I said Jews, from New York. You? He said, Well we’re a football family. We have three Heisman trophies in my family. I said, What’s a Heisman, and he kissed me. I kissed him back and, sensibly, we avoided each other for the next year.”

Understatement, wit, and light irony — rather than depth — are features of Bloom’s fiction and they are in evidence in this memoir too. Anchored in short chapters over a period of the five key days around Zurich, In Love flashes forward and back over scenes from their marriage and as well as to Ameche’s two memorial services, the first in the library across the street from their Connecticut home and a second in a Unitarian Universalist church in Philadelphia, the Ameche family hub. Bloom tells us little about how this event has been arranged but hints that as a Catholic suicide married to a Jew, and an activist for Planned Parenthood, who has personally escorted women past protestors at abortion clinics, he is not the best candidate for a Catholic burial.

Bloom paraphrases almost every conversation she has with her husband so that everything that happens is rendered in her voice. Though it is an eminently readable voice and I inferred that avoiding direct quotes was a defense against potential legal action, I found myself wanting to hear him speak about the reasoning that led to his decision to end his life before he no longer was able to do so.

Bloom quotes only one of their actual conversations.

“Here’s my first choice,” Brian says. “We go through this process and whenever it is that we reach the point that it seems like I’m really going downhill, you tell me and then we lie down together maybe in my office, not in our bedroom — well maybe in our bedroom, we’ll see — and you give me whatever will kill me. I trust your judgment.

“I can’t do that darling. It’ll be murder. I can’t give you something that will kill you. We read about that all the time. These people can be prosecuted,” I say, although I don’t really think that a white woman my age will be sent to do hard time for assisting her husband in ending his life, in Connecticut, the Land of Steady Habits, as Brian calls it.

“I could go to jail.”

Instead, Bloom goes online, on a computer in the public library, also, I assume, for legal reasons. After scrolling through the many ways people in the 21st century choose to kill themselves, she comes upon Dignitas, the Swiss organization that has “served” 3000 people who have successfully completed a gauntlet of stringent protocols and paid a $10,000 fee.

There are few supporting characters that are more than a sketch in this memoir and the reader craves to know more about them: their Dignitas contact who works under the alias of “Heidi” and Dr. G., their doctor in Zurich; her older sister Ellen, who gives Bloom a check to finance the trip to Dignitas; Bloom’s adult children and grandchildren; her Tarot card reader and her psychiatrist; his meditation leader and his therapist. Some key characters are described as “friend of a friend” or “a woman who knew a woman.” These shadow figures are meant to evoke the furtive days of abortion pre-Roe vs. Wade. But none of the supporting cast are fleshed out or extensively quoted, with the exception of the Clinical Director of End of Life Choices New York, Dr. Judith Schwartz, whose job it is to dispense such information, who vouches for Dignitas, and advises Bloom on how best to interact with the organization (“Just do what they tell you,” she says).

“I love Judith Schwartz,” Bloom writes, “as I now love everyone I speak to who is not cruel, horrified, or utterly useless in this process.”

Most surprisingly, it is Brian’s mother, Yvonne Ameche, who is living through the awful Alzheimer’s-driven deterioration of her closest friend, who becomes a steady and generous support. Mrs. Ameche is the only member of the Ameche family whom Bloom portrays in any detail and I welcomed reading everything about her reaction to their decision. Bloom also provides a sketch of her psychotherapist Wayne, who in addition to getting Bloom through the ordeal, volunteers to have a 90-minute interview with her husband and provide a medical assessment (required by Dignitas) attesting to the absence of any clinical depression in Ameche.

In this letter that Bloom excerpts for nearly two pages we finally get a biographical sketch of the man from someone other than the author: “He is the oldest of six children of a legendary American football hero and his loving but limited wife. He himself was an outstanding football player at Yale University, where he also began his architectural studies. He married his teenage childhood sweetheart. This was a union that did not stand the test of maturity that comes with life. They divorced without children. The divorce caused upheaval in Mr. Ameche’s devout Italian-American Catholic family of origin…Mr. Ameche estimates that he has 60-80 percent of his recent memory capacity left. I would estimate that it is more like 40-50 percent…At the moment he is mentally competent with sound judgment that is unhampered by mental illness or severe character disorder….”

Amy Bloom.

Close to the end of the book, on January 30, 2020, Bloom takes us to the apartment in an industrial park outside Zurich where Dignitas ends its clients’ lives. Here, she retraces, step by step, the Swiss-sanctioned end-of life ritual, describing the two tactful and neatly dressed ladies who greet them, the large room with many bowls of chocolate and several places to sit or lie down, the last conversation she and her husband have. He drinks his anti-emetic, then the sodium pentobarbital. He falls asleep. He stops breathing. Bloom sits with him alone for a while; then the ladies return to usher her out before the Swiss police arrive to identify the body. Then, she takes an Uber to the airport.

As it happened, I had just read a co-authored memoir of a couple that had pursued assisted suicide in California and documented a very different process in alternating chapters: his and hers. In A Matter of Life and Death, Marilyn Yalom is terminally ill, not with Alzheimer’s but with multiple myeloma, a lethal form of cancer diagnosed in 2019. She suffers from debilitating physical symptoms but her cognitive powers remain intact. Long married to psychiatrist and eminent novelist Irwin Yalom, both she and her husband are in their 80s and long-time California residents, able to make use of the state’s end-of-life laws.

They, too, are accomplished writers. Marilyn Yalom, was a professor of literature and women’s studies and their memoir, like In Love, was a project she, the dying party, initiated as a document, a how-to for others in similar circumstances and, one suspects, a memorial book for her family. Written in alternating chapters that take us from diagnosis and a hospice to a physician-assisted death, the reader is told the story from both partners’ points of view, one account often serving as a reality check on the other. It also provides a rich context filled with doctors, colleagues, children,and grandchildren. It is careful, comprehensive, and occasionally plodding. But, alternating chapter by chapter, it leaves no questions unanswered for the reader.

Bloom’s book, on the other hand, does. It is a memoir with all the strengths and limitations of the form and the single point of view of the memoirist. I was always aware of her selection of what to include and what to leave out. She leaves out their relative ages: will she be an old or young widow? (Wikipedia notes that they are the same age, both born in 1953). She does not write about anyone who contested or refused to comply with their plan or questioned their reasons. The people she does portray at any length are extraordinarily supportive and helpful. None express any doubts about Brian Ameche’s decision and the reader doesn’t know whether they expressed any or how many people even know about it because Bloom chooses to be vague about whom the couple told and when.

It is extraordinary for anyone to share the details of so intimate and controversial a process as assisted suicide with the world and I feel petty and picky quibbling with Bloom’s choices. But I wondered: did anyone say to her, don’t do it? Did any of Ameche’s friends or family express doubts? I would have liked to read much more direct dialogue. I would have liked to know about Brian Ameche’s life history, his life trajectory, his friends, recollections of members of his book group, his relations with his family of origin, his previous marriage, and the beliefs that allowed him to decide, in Bloom’s paraphrase, that he’d rather die on his feet than live on his knees.

Bloom’s voice is so strong and authoritative that I also missed other voices for contrast. Perhaps few people were willing to be quoted about Ameche himself or his decision to pursue assisted suicide. But this omission makes Bloom the sole authority, which gives In Love an unequivocal quality that made me, at times, question her version of the story. Yet with this caveat I found In Love a beautifully written and profoundly disturbing memoir about a subject that hits close to home for many readers. It is a heart-rending book and a very brave one.

Complete Article HERE!

How I learned to talk about death and dying

First step: Acknowledge it, together

By Steven Petrow

A serious illness is many things — terrifying, painful, life-altering. The prospect of losing a loved one, or your own life, becomes an unspeakable agony. It’s also isolating in a way I never could have imagined. I’ve been the one in that sickbed, and I’ve also done some time sitting beside it. I wouldn’t wish either experience on anyone.

Lately, however, I’ve been thinking about what memoirist Meghan O’Rourke has called “the long goodbye” and trying to focus on the one gift it does give us: the gift of time. Time to plan, but mostly time to unearth and process our feelings. And then, if we’re fortunate, to be able to share these deep-seated fears with those we love.

This is not easy. When my mother learned she had lung cancer several years ago, we both turned to humor to help absorb the meaning of her diagnosis and to deflect the pain. One afternoon, many months before she died, Mom said with a wry smile, “I think I’m really dying.” To which I replied, “You mean today? Because I’m going to the market, so if you really think so, I won’t shop for you.” “That’s hilarious,” Mom countered, a hungry smile now on her face. “What’s for dinner?” Very adroitly, pretty much reflexively, we had avoided the elephant in the room.

Mom’s health deteriorated over the next several weeks. Again, she raised the question of her death, but now without the smile. “Will dying be painful?” she asked. In that moment, I knew I needed to confront my own feelings about her mortality and not sidestep the conversation with facile banter.

I took Mom’s hand in mine and said, “Don’t worry, it won’t be painful.” I told her hospice had provided a “comfort kit,” which contained medications for restlessness, confusion, anxiety, sleeplessness, constipation and, of course, pain management. I could feel Mom’s hand relax. Finally, she said, with a palpable sense of relief, “Thank you.”

In the weeks after that, we began a new chapter. I hadn’t realized how much effort had gone into my denial. I thought about the many times I had said, “if you die …,” which denied what we both knew was inevitable. After I dropped the subjunctive and began to talk about when she died, a barrier was eliminated. She knew. I knew. Now, we knew together.

I don’t think Mom suffered in her final days. After she became “unresponsive” (considered part of “active dying”) I returned to that comfort kit at the direction of a nurse. I removed the liquid morphine and gently squeezed one drop, then a second into her mouth. When the end came a few hours later, my sister, brother and I sat on her hospital bed, holding hands with each other and our mother as she died. What a gift, I thought, as we helped her to let go honestly, openly, and — most importantly — together.

Three decades earlier, when I was newly in remission from my own cancer, I had so many worries — about recurrence, additional treatments, more surgery. But at its core the fear was always about dying, which I never acknowledged, which meant no opening for others to broach the topic. I tried hard to keep those anxieties buried away, mostly by taking anti-anxiety medications. I’d pop a Klonopin and for four hours I’d be “fine,” as I often repeated. Still, I felt detached from others, even myself, but in my mind, that was better than feeling. Or worse: talking about feelings with others.

I chose to be alone.

Every time when I returned to the hospital for follow-up labs and scans, I’d medicate. But drugs, it turns out, can do only so much. I’d still taste the fear in my throat, or notice the shallowness of my breathing. A few times I vomited — spontaneously — the associations too strong. No matter how hard I tried, I could not effectively lock away that demon, that fear.

Then I decided to volunteer at the cancer hospital that had given me so much, sharing my cancer “experience” with patients, which invariably included discussions of fear. I realized how helpful these conversations — about hair and weight loss, recurrence and remission, life and death — were to the patients I met in the hospital, either newly diagnosed or undergoing treatment. But these talks changed me, too.

For far too long, my fears had been caged inside me, dense and dark. Laura Wallace, a licensed clinical social worker whose practice focuses on transitions and loss, explained that acknowledging feelings of “loss and longing,” while deeply painful, is a much better alternative than anger, addiction and anxiety. Or denial.

Releasing these fears — into the rooms where I had these conversations, into the air outside the hospital when I would walk away — was liberating. Imagine a vial filled with dark blue worry. Release a drop into a small cup of water and it colors the water. Release another drop, this one into a gallon bucket, and it becomes nearly impossible to detect. By acknowledging and sharing my fears openly, I let them go and they began to dissolve. Eventually, I stopped taking those anti-anxiety medications.

In her recent memoir, “Going There,” journalist Katie Couric, whose husband died of colon cancer in 1998 at age 42, tells of feeling trapped between a rock and a hard place. “I was so worried about letting go of hope because I didn’t want Jay to spend whatever time he had left just waiting to die,” she wrote. “I think it takes extraordinary courage to be able to face death, and I think I was too scared, honestly.”

Couric’s words reverberated with me, especially as I’ve tried to take the lessons learned from my mother’s death, and my own illness: How to be present. How to balance today with tomorrow. How to find the courage to embrace what’s so often unspeakable.

A longtime friend, Barry Owen, succeeded in all three ways.

At 66, he revealed his pancreatic cancer diagnosis in a blog post. He knew, as did his husband, Dan, the unforgiving prognosis. (Stage IV pancreatic cancer has a five-year survival rate of 1 percent, according to Johns Hopkins Medicine.) “I have no illusions about this disease,” Barry wrote on his Caring Bridge blog, which was read by about 30 of his closest friends, including his two brothers.

Three months after his diagnosis, Barry pushed open the door to a conversation about dying. “Dan and I are starting to talk about planning, planning for my death,” he wrote. “This is not easy to write about.”

It was not easy to read about, either. But we joined the conversation with Barry and Dan, I hope, supporting them if not sharing their pain.

Barry did well enough for a while — long enough to celebrate his 67th birthday, to make a farewell tour to friends, and to enjoy the winter holidays. By spring, all that had changed. Eleven months after diagnosis, one of his caregivers posted the sentence everyone expected, yet dreaded. “So, yes, he is dying.” We understood. Barry’s followers made that final journey together with him.

During those final days I thought of “The Mary Tyler Moore Show,” one of Barry’s favorites, specifically the final scene where Mary, Rhoda, Lou, Ted and all the rest huddle, and walk offstage together, as one. It’s a tear-jerker, for sure.

We leaned in, through the Caring Bridge site. One friend acknowledged the heartbreak of losing Barry. His brother, Jamie, posted: “We all know the inevitable result, but it doesn’t keep me from becoming emotional every day.” I wrote that I’d burst into tears upon reading the news, but that I felt so deeply connected to his friends. Amid all this, a friend reminded us that Barry’s mantra had always been “Only connect,” which to him spoke to the importance of our relationships to help defeat “the isolation” — as novelist E.M. Forster put it — that keeps us apart.

I felt privileged to be among all these beautiful souls, so in touch with their feelings and able to express them. I thought then — as I do now — how rare this gift is. When Barry died, we held onto one another, tightly albeit it virtually. One friend posted, “Although I only know a few of all the friends around Barry, I feel part of you and share your grief.” Another wrote, “How terrible our loss.”

Complete Article HERE!