Palliative Care for MS

What It Is, When It’s Helpful

Palliative care can relieve emotional and physical suffering at any stage of MS.

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This approach to MS care focuses on quality of life and may be beneficial at any stage of the disease.

In recent years, there’s been a movement among many multiple sclerosis (MS) healthcare providers to integrate palliative care into their practices.

When most of us hear the term “palliative care,” if anything comes to mind, we probably think of hospice care — measures taken at the end of life to ease suffering and maximize comfort.

But palliative care is an approach that may be beneficial to anyone who experiences suffering due to a health condition, whether they’re just diagnosed or have lived with it for years. And it’s on the rise among MS care providers.

From 2005 to 2014, the percentage of people with MS in the United States who received palliative care increased from 0.2 to 6.1 percent, according to an article published in December 2018 in the Journal of Clinical Neuroscience.

But as these numbers show, most people with MS still don’t have meaningful access to palliative care, and there are still many misconceptions among both doctors and patients about what palliative care involves and how it applies to MS.

Here’s what palliative care means in the context of MS, when and how it might be helpful, and how you may be able to incorporate it into your treatment plan.

What Is Palliative Care for MS?

Palliative care describes an approach to providing healthcare, rather than any specific type of treatment. While there’s no precise definition, experts agree that it means treating more than just symptoms.

“How do you maintain quality of life? That’s really the crux of what palliative care is,” says Rachael Stacom, an adult nurse practitioner and senior vice president of population health at Independence Care System in New York City. “It’s about comfort and relief of suffering.”

“The way I explain it is looking at ‘disease-centered’ versus ‘person-centered’ care,” says Benzi Kluger, MD, a neuropalliative care specialist at UCHealth University of Colorado Hospital and professor of neurology at the University of Colorado School of Medicine in Aurora.

“In disease-centered care, the primary focus will always be on the patient, meaning a person defined by their illness,” says Dr. Kluger. “Whereas in palliative care, the primary focus is on people who can define their illness” and what’s important to them — including not just the patient, but also family members and any caregivers.

A palliative care approach, Kluger emphasizes, means “helping people with medical symptoms, but also with difficult emotions — things like grief, guilt, loneliness, caregiver burnout.” This approach can be adopted by many different kinds of MS healthcare providers, including neurologists, primary care doctors, and nurses, and it doesn’t require any specialized training in palliative medicine.

In addition to what’s known as primary palliative care — where the approach is a routine part of MS care — there are also specialized palliative care programs for people with advanced MS who need extra services focused on easing a large disease burden and getting optimal caregiver support.

Whether it’s provided as part of normal MS care or as a specialized program, palliative care means that providers and patients are discussing what they hope to accomplish together, and what to expect over time.

“Our goal is to help people anticipate if things are getting worse, and to have open and honest conversations about functional decline,” says Kluger, as opposed to focusing only on medical treatments aimed at slowing disease progression.

When Palliative Care Can Help for MS

Stacom helps oversee a community-based long-term care program for people with physical disabilities, many of whom have MS. But she says that palliative care can help people with MS long before they would sign up for a program like hers.

“For people with a potentially progressive neurologic disease, suffering happens right at the time of diagnosis,” she says. “Some people think that ‘suffering’ is a very strong word, but there’s a significant amount of stress” that comes with MS at all stages.

Many people with MS experience what’s known as anticipatory grief, Stacom says — meaning that they’re grieving the loss of function that may come with MS even before it occurs, according to an article published in the July–August 2014 issue of Social Work Today.

In this context, palliative care soon after an MS diagnosis means discussing, “What’s going to happen to me? Am I going to wind up in a wheelchair? It’s about allowing space for those conversations to happen, and understanding what that person values,” she says.

Kluger notes that many people are looking for a “road map” as soon as they receive an MS diagnosis. “They don’t want to be feeling their way forward one day at a time in the dark. They want more clarity around their diagnosis, and what to expect” he says.

But even if palliative care isn’t used from the beginning of MS treatment, it can be helpful later on, says Kluger. “As the disease progresses, there may be different triggers for either referral to a specialized palliative care program, or stepping up the palliative care approach.”

Several years into having MS, many people are struggling with pain or fatigue, greater disability or loss of mobility, or planning for a future in which they may need a caregiver, says Kluger. At this point, a palliative care approach can focus on managing symptoms that have grown more complex, and on managing difficult emotions.

When someone has advanced MS, a palliative care approach can focus on increased emotional support, supporting caregivers, and providing home help and other social services. If someone is near the end of life, it may also include hospice care.

At any point in this continuum, someone with MS may benefit from a specialized palliative care program — as described in an article published in October 2015 in Multiple Sclerosis Journal — “if they’re at a point where pain management or fatigue management goes beyond what their primary neurologist feels comfortable with,” says Kluger.

Someone with primary-progressive or secondary-progressive MS may choose to make a specialized palliative care program their main “medical home,” Kluger says, since there may not be much that a neurologist can do for them in terms of traditional disease management.

Kluger has found that at all stages of MS, palliative care can result in better symptom control, especially with pain and fatigue. Often, he says, patients report a better quality of life once they begin a palliative care approach to their care.

And when people with MS start having conversations with their doctor about their future, “they’re empowered to take more control over healthcare decisions” through advanced-care plans, preparing for potential hospitalizations, and eventually arranging end-of-life care in a way they see fit.

Getting Access to Palliative Care for MS

Unfortunately, most people with MS aren’t offered a palliative care approach by their regular healthcare providers. “Neuropalliative care is a relatively new field,” Kluger explains, and even if medical providers are receptive to the idea of palliative care, that doesn’t mean they offer specialized services, like home-based care.

For more people with MS to gain access to palliative care, there will need to be “a grassroots push to move the field towards this,” says Kluger. “I really encourage patients and families to talk to their doctors about it. They really see the need for this, oftentimes more than physicians do.”

Stacom believes that palliative care hasn’t caught on more quickly because, among other reasons, “it requires a power shift, where the person becomes the one leading the care, as opposed to the healthcare provider. And I think that’s a hard thing for us to do” as providers, she says.

But Stacom remains convinced that healthcare will move in the direction of palliative care, for MS and other conditions. “Person-centered care is where healthcare is going now. I think that as healthcare providers, we have a unique position to be a partner, and support people to lead a full life.”

Complete Article HERE!

Kathy Brandt, A Hospice Expert Who Invited The World Into Her Own Last Days With Cancer, Dies

In January, Kathy Brandt (right) was diagnosed with stage 3 ovarian clear cell carcinoma and learned she had mere months to live. She is pursuing aggressive palliative care, forgoing treatments such as chemotherapy or radiation.

by JoNel Aleccia

Kathy Brandt, a hospice industry leader who turned her own terminal cancer diagnosis into a public conversation about choices at the end of life, died Aug. 4. She was 54.

Brandt’s death was announced on social media by her wife and partner of 18 years, Kimberly Acquaviva, 47, a professor of nursing and author of a book about hospice care for LGBTQ patients and families.

“I wanted all of you to know that Kathy had a peaceful death and your love and support is what made that possible,” Acquaviva wrote in comments posted to Facebook. “Our family has felt your love and we can’t begin to tell you how much it’s meant to us.”

Brandt died at the Charlottesville, Va., home she shared with her wife, their 19-year-old son, Greyson Acquaviva, and their dogs, Dizzy and Mitzi. She was diagnosed in January with stage 3 ovarian clear cell carcinoma, a rare and aggressive cancer.

For the past several months, Brandt and Acquaviva chronicled the day-to-day drama of dying in a series of frank, intimate posts on Facebook and Twitter aimed at demystifying the process and empowering other patients.

After researching her disease, which has a median prognosis of less than 13 months and often fails to respond to chemotherapy, Brandt refused drug treatment, declining what she regarded as “futile” medicine. Instead, she chose aggressive palliative care to manage her symptoms, to the dismay of some friends and family — and even her oncologist.

“If it’s not going to save my life, then why would I go through trying to get an extra month, when that month leading up to it would be terrible?” Brandt told Kaiser Health News in April.

The couple’s posts were followed by hundreds of well-wishers who donated more than $80,000 to help defray living expenses and medical costs. The essays and tweets were an unusually intimate window into the physical, emotional and psychological process of dying.

In April, Brandt described herself as a “dead woman walking” on the sidewalks of Washington, D.C., where they lived until June.

“It’s surreal trying to go about a ‘normal’ life when you know you aren’t going to be around in a few months,” she wrote.

During the last weeks of Brandt’s illness, Acquaviva tweeted about her partner’s bowels, posted photos of her sleeping and shared that Brandt was distressed about what would happen to her and to her family when she died. The frank posts prompted concern from people who asked whether Brandt had consented to have her death live-tweeted for the world. Acquaviva replied:

“My wife @Kathy_Brandt is a hospice and palliative care professional, as am I. She decided early on that she wanted us to share her dying process — all of it — publicly so that she could keep educating people about death and dying until her last breath.”

A well-known hospice industry leader and consultant, Brandt spent three decades in the field and was most recently tapped to write and edit the latest version of clinical guidelines for quality palliative care.

The willingness of Brandt and Acquaviva to share an unflinching account of terminal cancer drew praise from fellow hospice and palliative care experts, said Jon Radulovic, a spokesman for the National Hospice and Palliative Care Organization and their longtime friend.

“As she did throughout her professional career, Kathy has continued to teach the field about compassionate care and patient self-determination,” he wrote in an email before her death.

Elena Prendergast, an assistant professor of nursing at Augusta University in Georgia, wrote that she was moved by their experience.

“I have gone through this with family and with patients, but somehow you both have found a way. With your humor and raw transparency, you both make me feel like I am learning about this process for the first time,” Prendergast tweeted last month.

Brandt remained passionate about encouraging patients to consider the full range of choices when confronting terminal illness.

“If you’re ever diagnosed with a disease that will ultimately kill you no matter what you do, think through what you want the rest of your life to look like,” she wrote in a July 11 email. “Then seek out care that will help you make that version a reality.”

Acquaviva said they had worried that Brandt would not receive the care they’d hoped for in a hospice setting — despite their long efforts to advocate for better conditions for LGBTQ people.

In a post on their gofundme page, Acquaviva urged: “Do whatever you can to ensure that ALL LGBTQ+ people — not just those who know who to call or what to ask for — have access to hospice care provided by professionals who will treat them with dignity, respect, and clinical competence.”

Brandt asked that her obituary appear in The New York Times. It is scheduled to run next weekend, Acquaviva said, and it includes a final request that nods to the activism that characterized Brandt’s work on behalf of LGBTQ people and others who need end-of-life care.

“From the time that Kathy was diagnosed with clear cell ovarian cancer six months ago, she was clear with her family that the cause of death should be listed as the Trump Presidency in her obituary. In lieu of flowers, the family asks that donations be sent to whichever candidate secures the Democratic nomination, even if you really wish someone better were running.”

A memorial for Brandt will be held at 2 p.m. Oct. 26 at Friends Meeting of Washington, 2111 Florida Ave. NW, Washington, D.C. 20008.

Complete Article HERE!

Students learn to care for dying people

Matthew Cullen, a Union College student volunteers at the Joan Nicole Prince Home, plays cards with resident Bob Humphrey.

by Sara Foss

When I ask Matthew Cullen to share one of his favorite experiences volunteering at the Joan Nicole Prince Home, his answer surprises me.

“Giving my first bed bath,” he says.

When you give a bed bath, “you use a wash cloth to wash a patient’s body,” Cullen explains, adding, “The residents are really grateful for it. One resident told me, ‘Thank you for that. I feel much better.’

This is the third summer that Cullen, a senior at Union College, has spent caring for dying residents at the Joan Nicole Prince Home in Scotia.

His shifts are a mix of mundane tasks aimed at making residents more comfortable and keeping them company. Sometimes that involves chatting at the kitchen table. Sometimes it involves sitting quietly while they rest or sleep.

“A lot of time I’m the only person here,” says Cullen, a native of Guilderland.

Helping terminally ill patients live their final days in peace and comfort might sound like a lot of responsibility for a 21-year-old college student.

But Cullen is more than up to the challenge. The ebullient red-head speaks of his work at the Joan Nicole Prince Home with insight, compassion, even wisdom.

“It can be sad sometimes, but the great majority of the time, it’s happy,” Cullen says. “The patients are sharing their memories and stories with you, and you’re doing the same.

Cullen isn’t the only college student who spends his summers volunteering at the Joan Nicole Prince Home.

He’s enrolled in a unique summer program, called CARE (Community Action Research and Education), that sends college students to volunteer in residential homes for the dying, which provide free, round-the-clock bedside care to terminally ill patients whose families are unable to care for them.

CARE got its start at Union College five years ago, and has steadily evolved since then.

It is now offered in partnership with Skidmore College, and open to students from a handful of other schools, such as Siena College.

This summer there are 13 students volunteering at four different residential homes for the dying: the Joan Nicole Prince Home, Gateway House of Peace in Ballston Spa, Mary’s Haven in Saratoga Springs and Hospeace House in Naples.

“These students are seeing the dying process as it happens,” Carol Weisse, the Union College professor who founded CARE, told me.

But it isn’t all gloom and doom.

Far from it.

“There’s joy in these homes,” Weisse said. “For the students to see that, it makes death less frightening.”

Residential homes for the dying — also known as comfort care homes — serve a noble purpose.

The staff and volunteers at these facilities become a kind of surrogate family for residents, doing “everything a family member would do,” said Weisse, who directs Union’s Pre-Health Professions Program and is herself a longtime hospice volunteer.

Everyone deserves good end-of-life care, and residential homes for the dying ensure that people with little in the way of resources can get it. If anything, we need more of these homes — and more volunteers to keep them running.

CARE was initially geared toward students planning careers in health care.

The idea, Weisse told me, was to give undergraduates who might one day treat dying patients a better sense of how to communicate with and care for those with no hope for recovery. These days, CARE is open to any student with an interest in end-of-life care and a willingness to commit to the research project.

The Joan Nicole Prince Home is bright and cheery, with a back porch, meditation garden, living room and kitchen where executive director Amanda Neveu is baking cookies during my visit with Cullen. The home can accommodate two patients at a time, and each have their own bedroom and bathroom.

Neveu told me that residents — neither of whom are able to speak to me — enjoy speaking with younger people.

“It’s a legacy thing,” she said. “They want to share their stories and have them live on.”

Cullen is planning to go to medical school, as is Nurupa Ramkissoon, a 19-year-old Union College junior and Schenectady High School graduate who has spent her summer volunteering at the Joan Nicole Prince Home through the CARE program.

“It’s definitely been a little sad,” Ramkisson said. “The people who come here are very sweet, and you spend so much time with them. … There’s one resident who likes teaching, and she’s teaching us how to cook. It’s making her feel comfortable, like it’s her home.”

Weisse said her goal is to “cultivate a community of compassionate caregivers,” which sounds like a good goal to me.

At some point, every one of us is going to need a compassionate caregiver, and training students to step into this role could have lasting benefits.

Weisse believes she has created a program that could be implemented at residential homes for the dying all over the country.

“My hope and my dream is that this can spread,” she said.

And with any luck, it will.

Complete Article HERE!

How to Confront, Prepare for, and Talk With Loved Ones About Death

By Elizabeth Kiefer

The average life expectancy in the United States is now 78.6 years old, according to the most recent data available from the Center for Disease Control (CDC). That’s almost two times what it was a century ago, when it was just 39.

While some might believe we’re on a path toward immortality, at least for now, death remains the one certain rite of passage that arrives for everyone eventually, and Dr. B.J. Miller believes a reckoning is in order.

“It’s high time to review the very common, boring truth that we’re all going to die,” says Miller, a hospice and palliative care physician whose TED Talk, “What Really Matters at the End of Life?” has been viewed more than one million times. The twist: More open conversations about death and dying may in fact help us all get more meaning out of life.

That’s one takeaway from Miller’s new book, A Beginner’s Guide to the End: Practical Advice for Living Life and Facing Death, co-written with Shoshana Berger. Part manual for practical stuff (like how to deal with the mountain of paperwork when someone passes) and more heart-centric subjects (like personal legacy and grieving for loved ones), the book is intended as a resource for anyone who will experience its subject matter, aka all of us. Prevention spoke with him about why talking about death talk is on the rise in the wider culture—and why it’s something to start discussing sooner than later.

We’re about to be the oldest, frailest population ever.

Americans have reached a pivotal population point. “We are about to be, in actual terms and relative terms, the oldest, frailest population ever,” says Miller. “Everyone’s going to be living with chronic illness, everyone’s going to be dying from chronic illness, in numbers we’ve never seen before.” Mass migration into retirement centers and care facilities isn’t the solution—but a more open, pragmatic dialog about quality of life and personal desires could be, Miller believes.

So, it’s time to develop a “relationship” with death.

There’s a reason talking to a sick loved one or sitting down to write a condolence letter can be so paralyzing.

“We don’t have the right language, or we worry we’ll say something at the wrong time and scare the person we’re talking to,” Miller says. His solution: “Think about it like a series of conversations, not a long-time talk.”

Discussing death in the abstract with someone when their health is good can also help you understand what they may want, and need, down the line; furthermore, it can empower you to articulate those things for yourself. Will those kinds of talks potentially make you anxious? Of course. But the aim is normalization over time—and that comes with a silver lining. “There’s a secret in the hospice world: Most people who do this kind of work and are around this subject a lot will probably tell you that their lives are better for it,” says Miller.

Listen to your loved ones.

Miller has observed that patients know more about what’s going on with their health than anyone else does—or that they may be letting on. A person might hesitate to bring up their thoughts about dying because it sounds like negative thinking. “The patient themselves is languishing, not knowing how to talk about it, or they don’t want to hurt their family’s feelings,” Miller says.

His advice is to “keep an eye out. The moment dad says, ‘I’m not sure about this treatment,’ or [mom] starts talking a lot about God,” give them the opportunity to follow that thread. You can come at the conversation from a philosophical or spiritual angle, focusing on beliefs or fears, but the point is to listen and hear them out. “When they crack the window, dare to enter it.”

It’s okay—actually, essential—to talk about costs.

Miller has seen caregivers lose their jobs, drain their bank accounts, and undermine the financial stability of their own families. “It’s as though bankrupting yourself for a loved one is the currency to show how much you care, even though everyone in the mix knows the person is going to be dying,” he says. But while you can’t place a monetary value on a life, it’s okay to keep money in the conversation. “Invite this variable into the mix in a conversation with your doctor,” says Miller. “It’s not just the medication or the pacemaker. It’s the cost of living with this thing.”

Furthermore, he adds: “Our healthcare system is wired to extend bodily life at all costs, and as our technologies have improved you can prop up a body practically indefinitely,” Miller says. “As patients—as people—you have to upend the medical system. You have to disrupt it and say ‘no thanks.’ Otherwise you’ll land in ICUs with tubes in every orifice and your family has got to decide how to schedule unplugging you.”

Ask yourself: Can I afford to die?

“Our commercial world, our health and benefits—all of it shows this huge design flaw: Dying is not baked into the plan,” says Miller. “We tried to erase it and it can’t be erased.” The result: a framework, from retirement saving plans to health insurance programs, that don’t include the costs associated with death in the picture. Which means: “You need to save more than you think you do—sock away money.”

Bear in mind what’s covered, too. An experimental treatment could be entirely out of pocket, while hospice is highly subsidized. At the end of the day: “It’s about harm reduction. You’ve got two shitty options. But a less shitty option is better, and that could make an important difference.”

Think out of the box about legacy.

“Selfish people do not tend to die happy because they can’t see the world outside themselves,” Miller says. Learning to do that—to care about the world beyond your presence in it—can help us all become kinder people, but it can also help frame thoughts about what you want to leave behind.

Miller is referring to legacy, which might be the best shot we get at immortality. But while we tend to immediately jump to monetary donations, it can be any mark on the world you’ve left behind. Miller tells a story about a man who used to sit out on his front porch and wave at everyone who went by; when he passed, “the whole neighborhood changed, just because that guy wasn’t out there waving.” The bottom line: “You’re going to affect people, no matter what you do.” So try to leave behind something they will remember with a smile.

Complete Article HERE!

When your spouse becomes your caregiver

After Michael Draper was diagnosed with a rare brain disease, his husband retired to take care of him full-time

Terry Wicks, left, and Michael Draper

By DAVID TAFFET

Michael Draper describes the condition he’s been dealing with for seven years as a “designer disease.” His husband, Terry Wicks, said that when they finally received a diagnoses, “the bottom dropped out of our world.”

Draper went almost two years before receiving a diagnosis of MSA — multiple system atrophy — a progressive neurodegenerative brain disorder that results in death.

Wicks has become his full-time caregiver.

MSA is often misdiagnosed as Parkinson’s Disease, but it seems to be more related to other diseases like PSP and Alzheimer’s characterized by a build up of certain proteins in the brain. Wicks explained that with MSA, the proteins needed to transmit signals from one cell to another seem to crumple and block transmission. As that happens, brain cells die.

Functions that are automatic — maintaining body temperature, swallowing, breathing, eliminating waste — stop working. Speech is affected. Muscle coordination deteriorates. The person with MSA becomes unable to take care of himself.

In 2013, the couple was living in California. Draper was an executive with Yahoo. Wicks was an MRI technician.

Wicks remembers asking his husband one day, “Why are you so clumsy lately?”

After a year of a variety of symptoms presenting themselves and several doctors unable to diagnose what was wrong, they went to Stanford for a diagnosis. After almost a year of visits, their doctor told them that she was waiting for one more symptom to appear. When it did, she confirmed MSA.

Symptoms appear when a person is in his or her 50s. Draper was 52 when they first recognized something was wrong. Those manifestations progress for five to 10 years.

New drugs are being tried to halt progression, but Wicks said his husband’s condition was too advanced for the medications to work. And because it takes so long to diagnose, most people have progressed beyond the point where these medications will help.

Four years ago, both men had to stop working. Draper was unable to work any longer so Wicks, who’s seven years older, retired to take care of him.

They decided to move back to Dallas to be closer to family. Their doctor at Stanford told them Dallas was a perfect choice because a colleague of hers had recently opened an MSA clinic at UT Southwestern, so Draper would receive top medical care.

Wicks made a trip by himself and purchased a house in Garland. He said it was the only time in their 29 years together that he had bought a house without his husband.

Wicks describes himself as a planner. So before leaving, he had planned what they needed in a house. He found one in Garland that fit his needs — a 1980s one-story ranch without any stairs or steep inclines that could be outfitted for their needs.

Among the work needed on the house was a complete bathroom redo. They replaced the tub with a walk-in shower fitted with a large tiled seat and an entrance without a step so that a wheelchair can roll in.

Because someone with MSA eventually has trouble turning around, Wicks found something he calls a pivot disk, sort of a lazy susan for people. From his wheelchair, Draper can stand and Wicks rotates him 180 degrees so he can sit in the shower or on the toilet.

Wicks said a person who needs this level of care loses all personal dignity and they’ve worked to keep Draper as independent as possible as long as possible. When he couldn’t brush his own teeth with a regular brush, they got an electric toothbrush.

Draper joked that he could still use a razor as long as his husband didn’t mind seeing him with slash marks all over his face. An electric razor allows him to continue shaving himself for now.

While they still are able to make a trip to the hair salon to get his hair cut, their hairdresser said he’d come to house once he can’t get out any longer.

Until recently, Draper had been using mostly a walker. Lately, he’s less able to make it around the house that way, and he’s begun relying more on his wheelchair.

Over the last few weeks, Wicks said he’s also begun having to use a catheter in order to urinate.

Draper said he feels guilty that he’s putting his husband through this, but Wicks wouldn’t have it any other way.

To help them deal with their situation, they go to support groups. Spouses taking care of their spouses compare, commiserate and share. That’s how he learned about the pivot disk. Those with the rare disorder that may affect only about 15,000 Americans don’t feel as alone when they get together.

Wicks is also careful about caregiver fatigue. Draper’s parents will take care of him for a week while Wicks takes a trip to the Seattle area where the couple lived for a number of years to help decide if after his husband’s death, he wants to move back there.

Draper encouraged his husband to take the trip. This way, he can participate in making future plans even if he won’t share them himself. He wants to know his husband will be all right and will return to having a life beyond caregiving.

Wicks said he still is able to leave Draper alone for an hour to run out to the store for groceries. As Draper’s condition deteriorates, Wicks said he’ll have to hire someone to come into the house to relieve him so he can do errands.

Caregiving that includes everything from personal care to doing all of the housework is a full-time job, Wicks explained.

“Unless you’ve done it, you have no idea how much it entails,” he said.

In addition to the physical labor, caregiving involves stress. Wicks described what he’s going through as anticipatory grief. Most people don’t grieve until their spouse is gone, and Draper has already outlived original projections for his life expectancy with MSA.

Wicks doesn’t know if the grieving he’s going through now — imagining what life will be like without his husband — will facilitate the grief he’ll feel after his husband’s death or if he’ll experience the loss he’s expecting all over again.

But that anticipatory grief also propels him to make the best life he can for both of them. Draper still has his sense of humor even as communicating grows more difficult. But as they look at each other and tell their story wishing it was headed toward a different ending, there’s a contentment and bliss in their just being together.

Complete Article HERE!

Docs No Less Likely to Die in Hospital Than Other Patients

By Nicola M. Parry, DVM

With respect to end-of-life care, physicians’ likelihood of dying at home is similar to that of nonphysician patients, a Canadian study suggests.

“Overall, they did not consistently opt for less-aggressive care but instead used both intensive and palliative care more than nonphysicians,” Hannah Wunsch, MD, from the University of Toronto, Canada, and colleagues write in an article published online July 24 in JAMA Network Open.

Intensive end-of-life treatment is common in North America, often going against patients’ previously reported preferences. Previous studies have suggested that physicians in the United States are somewhat less likely to die in the hospital than other patients, suggesting they may be better able to match their care with their preferences.

To see if that pattern held true in a system with universal healthcare, Wunsch and colleagues compared the intensity of treatment received by physician and nonphysician patients at the end of life in Ontario, Canada.

“The primary outcome was location of death, with the hypothesis that physicians are more likely to receive less-intensive end-of-life care,” the authors write.

The researchers analyzed medical and death records of 2507 physicians and 7513 nonphysicians who died between 2004 and 2015.

They found that physicians were no more likely to die at home than nonphysicians (42.8% vs 39%; adjusted relative risk [aRR], 1.04; 95% confidence interval [CI], 0.99 – 1.09). However, physicians were more likely to die in an intensive care unit (ICU) (11.9% vs 10%; aRR, 1.22; 95% CI, 1.08 – 1.39).

The data also showed that, in the 6 months before death, physicians were less likely to visit an emergency department (73% vs 78.4%; aRR, 0.96; 95% CI, 0.94 – 0.98), but more likely to be admitted to an ICU (20.8% vs 19.1%; aRR, 1.14; 95% CI, 1.05 – 1.24), and to receive palliative care (52.9% vs 47.4%; aRR, 1.18; 95% CI, 1.13 – 1.23).

However, a subgroup analysis of patients with chronic conditions showed that physicians (n = 1375) were more likely to die at home than nonphysicians (n = 4117) (35.2% vs 30.7%; aRR, 1.12; 95% CI, 1.04 – 1.22). Among those with cancer in this subgroup, physicians were also more likely to die at home (37.6% vs 28.6%; aRR, 1.30; 95% CI, 1.13 – 1.50), and to receive chemotherapy in the last 6 months of life (37.9% vs 29.8%; aRR, 1.28; 95% CI, 1.13 – 1.46).

In an interview with Medscape Medical News, study coauthor Robert A. Fowler, MDCM, MS(Epi), also from the University of Toronto, was struck by how his group’s findings differed from the US studies.

“We wondered whether this might relate to differences in payment systems for healthcare services in the United States, in comparison to Canada where we have a theoretically universal healthcare system for in-hospital care, yet often have more limited options for home-based and palliative care at end of life.”

Overall, Fowler expressed surprise at the findings of both the US and Canadian studies — “chiefly, that many elements of end-of-life care are, despite some differences, remarkably similar among physicians and the general population.”

 

This was different from his group’s original hypothesis that physicians would opt for much less inpatient care.

“It was interesting that we did see that physicians were both more likely to receive treatment in an ICU, known for its use of technology-laden care,” he added, “and also more likely to receive palliative care at the end of life.”

According to Fowler, this offers a more nuanced perspective of what physicians may perceive to be optimal care at the end of life, as opposed to a simplistic notion of ‘more’ or ‘less’ being better: “Sometimes, more aggressive care is warranted,” he said, “yet, at other times, focusing more squarely on comfort is best.”

Complete Article HERE!

We’re in the middle of a revolution on death

Mary Klein, center, speaks at a news conference in Washington on April 5, 2018, to urge D.C. officials to educate doctors about the city’s “death with dignity” law.

By Jon Meacham

Jon Meacham is the author of “The Soul of America: The Battle for Our Better Angels.”

Tuesday was to be the day — in the morning, because everything was taken care of. The goodbyes had been said, the tears shed, the coffin handmade. In the spring of 2018, Dick Shannon, a former Silicon Valley engineer with untreatable cancer, took advantage of California’s “death with dignity” law to end his own life once all other medical possibilities had been exhausted.

“My observation about the way people die, at least in America, is they . . . are not allowed the opportunity to be part of the process,” Shannon explained. “For my way of thinking, the part that bothers me just immensely is not being allowed to be part of that process. It’s my death. Go with what you believe, but don’t tell me what I have to do.” Discussing the ultimate decision with his doctor, Shannon remarked, “It’s hard to fathom. I go to sleep and that’s the end of it. I’ll never know anything different.” He paused, then said simply: “Okay.”

When the day came, Shannon was ready. The end-of-life medical cocktail was mixed in a silver stainless steel cup, and he drank it in front of his loving and tearful family. “I’ve accepted the fact that I’m dying,” he’d said earlier. “There’s nothing I can do to stop it. Planning the final days of my life gives me a sense of participation and satisfaction.” As he prepared to slip away, he told his family, “Just know that I love you — each and every one of you.”

America is becoming ever more like itself when it comes to death. From Walden Pond to Huck Finn’s lighting out for the territory, we’re a nation of individualists, shaped and suffused by self-reliance and a stubborn allegiance to the live-free-or-die motto of the Revolutionary era. With this twist: Baby boomers and their successor generations are insisting on being free to take control of death itself. Innovation, creativity and customization — the hallmarks of our time, an age in which we can run much of our lives from our mobile phones — are now transforming both how we die and the mechanics of remembrance that come afterward.

The coming revolution in death — and Dick Shannon’s story — is laid out with uncommon wisdom in a powerful, new HBO documentary, “Alternate Endings,” which debuts Aug. 14. Only eight states and the District of Columbia have death-with-dignity laws, but three of those states — Hawaii, Maine and New Jersey — have put their statutes on the books within the past year. And 18 other states considered such laws in the 2019 legislative season.

The movement has not attracted the same attention it once did; in the 1990s, Jack “Dr. Death” Kevorkian, the right-to-die advocate, drew considerable public alarm. As the documentary by Perri Peltz and Matthew O’Neill makes clear, the conversation has entered a new and compelling phase now that Americans are thinking about death as something as disintermediated as commuting, dating and shopping.

The United States has a long history of rethinking the rituals of death. Embalming became part of the popular understanding and tradition of death during the Civil War; the task then was to preserve the bodies of dead soldiers so their families could see them one final time. Abraham Lincoln may have done the most to raise the profile of embalming when he chose first to embalm his 11-year-old son and then when his own corpse was embalmed for the long train ride home to Springfield, Ill., after his assassination.

Now the death industry in the United States has evolved with the culture. For many, corporate consolidation has reshaped a funeral home industry, which was once made up almost entirely of local, family-owned companies. (And which, as Jessica Mitford wrote in her 1963 book “The American Way of Death,” unctuously gouged grieving families.) The Internet has disrupted the casket industry with Walmart and others selling directly to families. As “Alternate Endings” reports, there are now green burials (including using a loved one’s ashes to help restore coral reefs), space burials and even drive-through, open-casket viewings.

Once the great gatekeeper of life and death, organized religion, too, is losing its sway. In an era in which friends routinely ordain themselves on the Internet to preside at weddings, the rising numbers of Americans who are “unaffiliated” with any particular faith mean that institutions that once gave shape to life and meaning to death are being gradually supplanted family to family.

The issues raised by Dick Shannon’s story are the most profound. Many religious authorities — notably the Roman Catholic Church — oppose euthanasia (Greek for a “good death”). Such teachings face a generational head wind as more people (and states) move from deferring to institutions to simply making their own decisions. The questions involved are intricate and complex and painful — but it is plain to see that we are witnessing another rite of passage undergoing an irrevocable disruption.

When the Shannons held a “living wake” for friends to say goodbye to Dick, the family hung a banner on the wall: “Life is what you celebrate. All of it. Even its end.” Before passing, Shannon said, “I want it to be on my terms.” Given that death comes for us all, so, too, will many of us have to confront the agonizing decision that he faced with grace.

Complete Article HERE!