Tag: End of Life Care

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Is Dying at Home Overrated?

A palliative care physician struggles with the complex realities of dying at home, and the unintended consequences of making it a societal priority.

By Richard Leiter, M.D.

“If time were short, where would you want to be?”

As a palliative care physician, I regularly ask my patients, or their family members, where they want to die. The specific language I use depends on what they know, what they want to know and how they process information, but the basic premise is the same. Having asked this of hundreds of patients, I have come to expect most will tell me that they want to be at home.

But recently I have struggled with the complex realities of dying at home, and the unintended consequences of our making it a societal priority.

It is emotionally and intellectually compelling that patients should die in their own homes, surrounded by loved ones in a comfortable, familiar environment. For patients dying of end-stage disease, be it cancer, heart disease or something else, even the best hospitals are unlikely to be able to “fix” the underlying problem. We worry that people will go through expensive and potentially painful tests and interventions that have little chance of changing the ultimate outcome. And the opportunity costs are high; time waiting for a scan or procedure could be spent getting financial affairs in order or saying goodbye.

While there are still those who subscribe to the idea that excellent health care demands doing everything possible to prolong a life, many doctors and patients now prefer a less intensive approach when time is short. Rates of hospice enrollment have increased and the home has re-emerged as a place to die, not only preferred by patients and families but also heavily recommended by clinicians, especially in my field.

The system is imperfect, though. Unless a family has the significant resources necessary to hire aides or nurses, informal caregivers become responsible for nearly everything — from feeding to bathing to toileting. These tasks often get harder as the dying person weakens. In my experience, most family members want to care for their loved ones at home, but many are unaware of caregiving’s physical and emotional toll. And the length of time a patient spends in hospice care is difficult to predict, sometimes requiring caregivers to take significant time away from work or other family members.

Complicating matters, I frequently detect ambivalence in patients who tell me they want to die at home. Some are comforted by the reliability of the nursing care and easier accessibility of IV medications in the hospital. For others, dying at home may not be their top priority. Parents may want to protect their young children’s physical space from death. Similarly, one patient’s wife told me through tears that their adult son had died suddenly in their home a few years earlier; she could not bear the thought of watching her husband die in the same place.

We should not be surprised, then, that some patients who do enroll in hospice end up back in the hospital. And yet we in palliative care often view these cases as failures. We wonder what the critical gap was that led the family to call 911 or come to the emergency department. Was the patient’s pain uncontrolled? Were medications unavailable? Did the family panic? Something must have gone wrong.

I wonder, though, if we’ve adopted the wrong approach. As a doctor who regularly asks my patients where they “want” to die, I often worry about what this will look like if they choose home. I am concerned about the unacknowledged caregiving burden for families and friends. In addition, many people with advanced disease experience escalating symptoms, like pain or shortness of breath, that even the best hospices have difficulty managing in the home. In these situations, I am caught between the passionate rhetoric of my field, the spoken and unspoken wishes of my patients, and my clinical judgment. The patient in front of me always takes precedence, but my cognitive dissonance is difficult to escape.

To be sure, dying in the hospital has its own trade-offs. Though we can make more, and faster, medication adjustments, severe symptoms can be difficult to treat regardless of the setting. And as much as we try, it’s nearly impossible to alter the health care system’s usual rhythms. Overflowing hospitals often lack the flexibility to give dying patients the privacy of a single room. We cannot guarantee that they will not be woken up by the squeal of a malfunctioning IV pump or the chaos of clinicians scrambling to help another patient. Family and friends may live hundreds of miles away, preventing them from being with their loved ones at critical moments. While an inpatient hospice facility, which represents a third option, can provide hospital-level care in more of a homelike environment, Medicare and other insurance providers have set a high threshold for the few available beds. Most patients are only eligible if they are in the last few days of life or have severe, uncontrolled symptoms that would otherwise require hospitalization.

This dilemma entered my personal life earlier this year. The caregiver for my 96-year old grandmother found her slumped over and unresponsive in her wheelchair in her apartment, where she lived alone, but with the support of aides around the clock. She did not regain consciousness, and the paramedics arrived to take her to the hospital. When my uncle called to tell me what was going on, I was unsure of how to respond. My grandmother’s health and cognition had been declining over the past few months, but her quality of life was still good. In that moment, though, my clinical intuition was that she was dying. As a palliative care physician, wasn’t it now my job to protect my grandmother from spending what could be her final hours in a hospital? On the other hand, without seeing her how could I be sure that whatever was happening could not be fixed? With uncertainty and emotion clouding my judgment, I froze.

The paramedic took the phone and gently explained that he wanted to ensure my grandmother had all the care she needed, whatever the outcome. Taking her to the hospital was the right decision. The doctor in the emergency department empathically told us he thought my grandmother was dying and recommended we focus on ensuring that the short time she had left was as comfortable as possible. The nurses quietly checked on her throughout the night, looking for any signs of distress. My grandmother died the next morning — in the hospital and at peace.

The quality and consistency of end-of-life care are not where they need to be. To ensure that all people receive the same compassionate care that my grandmother did, we need to focus not only on where, but also on how they die. When we view all deaths in the hospital as failures, we risk neglecting a critical opportunity to improve the dying experience for many of our society’s sickest and most vulnerable. Clinicians across medicine should elicit and, whenever possible, honor their patients’ preferences for where they want to die. At the same time, we need to acknowledge our own uncertainties and be honest — with ourselves and our patients — about the difficult trade-offs these choices entail.

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“Guardianship” Often Fails Poor Seniors.

Is There a Different Way?

Lack of regulation and potential for abuse make many elder care advocates wary of the guardianship model.

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When Patricia Cassidy was at her lowest point, she had just been evicted, was overwhelmed with mounting medical bills, and was suffering from a traumatic brain injury that left her emotionally unable to cope with everyday tasks. Then her despair turned to fear as she found herself before a local judge, who mandated that she would have to cede control over her financial and medical affairs to a guardian — an organization that the court would task with managing many components of her life on her behalf.

“I went to the hearing, and it was very, very scary for me,” she recalled in a recent interview. At the time, her therapist and rheumatologist had petitioned the court to place her in a special public guardianship program for people without other means of support from family or friends. But Cassidy, a 59-year-old domestic abuse survivor facing several chronic ailments, feared losing her independence. “I was afraid of guardians,” she said. “I felt that they were going to come in and take over my life and take over everything I had and get rid of it all.”

Five years later, Cassidy said that what she most feared about guardianship — losing control — hasn’t happened. Instead, she’s stayed independent, living in a Brooklyn apartment her case worker helped secure. She now sees her guardianship, administered by the nonprofit advocacy group Vera Institute of Justice, as “just a part of my life.” But her program is part of a small, unconventional support network for extremely vulnerable seniors that aims to safeguard their lives without taking them over. For hundreds of thousands of other seniors, guardianship is an ethical gray zone, operating at the heart of a question that increasingly haunts an aging nation: When am I no longer able to care for myself?

Aging Gaps

Guardianship is one of the most ethically fraught aspects of the elder care system, hinging on the most sensitive questions about personal liberty, medical responsibility and kinship. And it all starts, for better or worse, with a judge’s decree. A court appoints a guardian when a senior is deemed unable to live independently, usually after a hearing process that reviews an individual’s medical needs or physical, intellectual, mental or psychological disabilities, and determines that guardianship is appropriate. Similar to adoption, the guardian is in most cases a relative or friend who petitions for them. But people with fewer resources might end up in the care of a public or private agency, which is tasked with managing issues like medical treatment, financial planning and end-of-life care.

Overall, about 1.5 million people nationwide are in some form of guardianship, more than three-quarters of them involving a relative. Seniors without friends or relatives who are willing to help manage their affairs may enter the care of a private guardian (who is generally arranged by family or friends and compensated directly), if they have the financial resources to do so. Elderly people who don’t have enough funds to finance their own guardians can enter a separate system known as public or community guardianship, provided by a nonprofit or government agency. But as a whole, court-appointed guardianships lack central regulation or monitoring. Advocates fear that as the Baby Boom generation ages and guardianship becomes more widespread, so will the potential for abuse or neglect.

The Vera Institute’s The Guardianship Project (TGP) is trying to get courts and communities to reimagine guardianship, both through research and advocacy and through running its own guardianship model, which now serves about 180 people across New York, including Cassidy. On a national level, TGP’s research on guardianship programs in several states suggests the system is letting many seniors fall through the cracks: Surveys of judges and other court personnel, along with professional guardians, indicate that many courts are overstretched; there is little monitoring of cases, and judges often lack expertise for handling complex cases of seniors with serious health and economic issues. Meanwhile, court-appointed guardians are in many cases attorneys, who might have no expertise in caregiving, and respondents reported a lack of guardians available with skills like social work and nursing.

“Basically, what the whole story is showing is that there’s a population of elderly, disabled and/or poor people that are largely invisible and largely ignored,” said TGP Director Kimberly George.

Meanwhile, public wariness of guardianship is growing: Media reports and government audits have revealed many cases plagued by dysfunctional bureaucracy and a pattern of elder abuse. In professional private guardianships, which often take in seniors who have some assets to pay for services, scandals have erupted in cases of neglect, exploitation or abuse of elderly people. But the poorest seniors are even more vulnerable, since their fate relies completely on the courts and public welfare systems. Poor, socially isolated seniors with complex care needs often find themselves assigned to a public or community guardian that is financed by public funds, but without adequate resources for care and legal services. According to Peter Strauss, an elder law attorney and professor at New York Law School, when funding is arbitrary and inconsistent, guardians, public or private are frustrated by “underfunding, short staff, and then they get overwhelmed with the number of cases that they can’t handle.”

“There’s a gaping hole in the system for folks who don’t have money, but who need help and don’t have anybody [who] can step in to pay their bills, make health care decisions and the like,” said Bernard Krooks, an elder law attorney who handles guardianship cases in New York. Although public guardianship programs could play a critical role for the most marginalized seniors, Krooks told Truthout, “The reality is, there has not been a funding mechanism in New York State to make this happen.”

Keeping Elders at Home

TGP’s model seeks to serve as a different kind of last resort, aiming to provide intensive services for seniors in economic hardship, with no family or friends available to serve as guardians. Funded by New York’s Office of Court Administration and other public and philanthropic funds, TGP serves clients across a range of settings, including residential care facilities, but aims to keep clients in their communities. Each client with a “wraparound team” that includes lawyers and other support staff, with specialists in managing public benefits, finances and housing. About half of the clients live at or below the federal poverty line, and half are people of color. About 60 percent of clients are living in their communities, while others live in residential institutions like nursing homes.

TGP’s multidisciplinary program intends to knit together different strands of the social infrastructure to help people avoid nursing homes and jails. If a client with mental health problems suffers a breakdown and gets arrested, TGP can provide legal representation to secure their release from jail and help connect them to a long-term treatment program that fits their needs. TGP can also support undocumented seniors by helping them obtain medical care and other services while avoiding immigration authorities and federal law that curtails non-citizens’ access to aid.

Until recently, Cassidy hardly fit the stereotype of an “incapacitated” elder. Earlier in her life, she had worked in public relation and museum curation, but over the years, her health deteriorated due to various chronic ailments and domestic abuse. Then in her mid-fifties, she was living on her own — just not very well. Her brain injury often triggered emotional outbursts; basic tasks like a visit to the bank could spiral into an angry breakdown. “I was very overwhelmed, and then therefore not able to even operate on the simplest level,” she said. Cassidy’s vulnerability was aggravated by estrangement from family members. “It was like I became an orphan at 50,” she said.

Her therapist and rheumatologist encouraged her to enter into the guardianship as a way of getting her life under control. A TGP case worker and other staff have helped her sort out her finances and secure a new apartment with a special housing subsidy based on her medical condition. While Cassidy is capable of making her own treatment decisions, her guardian also acts as an interlocutor. A conversation with a doctor can leave her “mentally fatigued,” she adds, but TGP staff “are there with me, and they’re talking to the doctor … then afterwards if they need to, [they] explain it to me five times — the doctor is not going to explain anything to you five times — [so that] I’m sure that it’s a good decision that’s being made.”

TGP works with individuals in residential institutions, but also helps them move back into their communities whenever possible. As the report explains, many clients become “stuck” in the medical system, “languishing needlessly in a hospital or nursing home,” unable to be discharged “because no one will take on the challenges of transitioning him or her back to their homes or to a less-restrictive setting with proper oversight.” Many guardians, George said, particularly those ill-prepared to deal with complex, high-needs clients, might be tempted to place a senior in a nursing home as an “easier” solution — eliminating the need for the guardian to worry about housing, food or managing the client’s bills.

When TGP steps in, the team prepares for a client’s return home by taking care of tasks like settling rent arrears with the landlord, or planning end-of-life care — services that the client would never be able to arrange while bedridden in a crowded rehab center. If a client’s condition deteriorates to the point that some form of institutionalization, such as placement in a nursing home, appears necessary, TGP would work to place them in the least restrictive setting, according to the study, perhaps seeking out a local facility “with staff who speak a client’s primary language and access to religious services and culturally familiar foods.”

Despite its personalized approach, a recent cost-analysis found that TGP’s budget saved its roughly 160 to 180 clients collectively about $3 million in annual Medicaid costs, primarily by avoiding placements in nursing homes.

The Vera Institute’s study suggests other counties and states can use a similar holistic approach to public guardianship. On the policy level, TGP’s study calls for an expansion of public guardianship nationwide — with additional funding, comprehensive monitoring of guardians and service providers, and enhanced regulatory standards, including a commitment to placing people in the least restrictive setting, and a staff-client ratio of 1 to 20 to ensure adequate resources and oversight. Overall, a more human-centered public guardianship program could enable the most vulnerable seniors to live more independently and stay close to their communities.

Safeguarding Elder Rights

Still TGP, with its limited capacity, is not itself a solution for the guardianship crisis. Some disability rights advocates criticize the concept of guardianship in general, viewing it as incompatible with the principle of independent living. They prefer alternative legal arrangements like “supported decision-making,” in which social service providers provide guidance for people on medical and financial decisions while still leaving them legally in charge of their affairs.

Meanwhile, progressive elder law advocates are also gravitating toward alternatives to guardianship that support independence whenever feasible. Alison Herschel, director of Michigan Elder Justice Initiative, says that while guardianship is necessary for some individuals, “we believe there are far too many guardianships and far too many cases that should have been resolved by utilizing less restrictive alternatives.”

The Vera Institute’s study urges court administrators to implement better training so courts can screen cases so people can opt for less restrictive options like supported decision-making. Instead of appointing a guardian for a senior with severe dementia, for example, a judge could arrange for a sibling to gain power of attorney to aid with medical or legal decisions, and provide a home health aide. Even when guardianship is strictly a last resort, the court process can be a framework for meeting a senior’s needs for both care and personal dignity, and providing support without threatening self-determination.

For Cassidy, the TGP guardianship model is not just about getting the right services, but regaining a firm sense of both her abilities and limits. Her guardian hasn’t taken over her life, as she had once feared; instead, it’s a stabilizing presence.

If she ever needs her case worker, she knows who to call. “I carry their card with me all the time.”

Complete Article ↪HERE↩!

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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.”

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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↩!

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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↩!

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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↩!

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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↩!