Patients Want To Die At Home, But Home Hospice Care Can Be Tough On Families

By

“I’m not anti-hospice at at all,” says Joy Johnston, a writer from Atlanta. “But I think people aren’t prepared for all the effort that it takes to give someone a good death at home.”

Even though surveys show it’s what most Americans say they want, dying at home is “not all it’s cracked up to be,” says Johnson, who relocated to New Mexico at age 40 to care for her dying mother some years ago, and ultimately wrote an essay about her frustrations with the way hospice care often works in the U.S.

Johnston, like many family caregivers, was surprised that her mother’s hospice provider left most of the physical work to her. She says during the final weeks of her mother’s life, she felt more like a tired nurse than a devoted daughter.

According to a recent Kaiser Family Foundation poll, seven in 10 Americans say they would prefer to die at home, when the time comes. And that’s the direction the health care system is moving, too, hoping to avoid unnecessary and expensive treatment at the end of life.

The home hospice movement has been great for patients, says Vanderbilt palliative care physician Parul Goyal — many patients are thrilled with the care they get.

“I do think that when they are at home, they are in a peaceful environment,” Goyal says. “It is comfortable for them. But,” she notes, “it may not be comfortable for family members watching them taking their last breath.”

Still, when it comes to where we die, the U.S. has reached a tipping point. Home is now the most common place of death, according to new research, and a majority of Medicare patients are now turning to hospice services to help make that possible. Fewer Americans these days are dying in a hospital, under the close supervision of doctors and nurses.

Hospice allows a patient deemed to have fewer than six months to live to change the focus of their medical care — from the goal of curing disease, to a new goal of using treatments and medicines to maintain comfort and quality of life. It is a form of palliative care, which also focuses on pain management and quality of life, but can be provided while a patient continues to seek a cure or receive treatments to prolong life.

Usually, hospice care is offered in the home, or sometimes in a nursing home.

Since the mid-1990s, Medicare has allowed the hospice benefit to cover more types of diagnoses, and therefore more people. As acceptance grows among physicians and patients, the numbers continue to balloon — from 1.27 million patients in 2012 to 1.49 million in 2017.

According to the National Hospice and Palliative Care Association, hospice is now a $19 billion industry, almost entirely funded by taxpayers. But as the business has grown, so has the burden on families, who are often the ones providing most of the care.

For example, one intimate task in particular changed Joy Johnston’s view of what hospice really means — trying to get her mom’s bowels moving. Constipation plagues many dying patients.

“It’s ironically called the ‘comfort care kit’ that you get with home hospice. They include suppositories, and so I had to do that,” she says. “That was the lowest point. And I’m sure it was the lowest point for my mother as well. And it didn’t work.”

Hospice agencies primarily serve in an advisory role and from a distance, even in the final, intense days when family caregivers, or home nurses they’ve hired, must continually adjust morphine doses or deal with typical end-of-life symptoms, such as bleeding or breathing trouble. Those decisive moments can be scary for the family, says Dr. Joan Teno, a physician and leading hospice researcher at Oregon Health and Science University.

“Imagine if you’re the caregiver, and that you’re in the house,” Teno says. “it’s in the middle of the night, 2 o’clock in the morning, and all of a sudden, your family member has a grand mal seizure.”

That’s exactly what happened with Teno’s mother.

“While it was difficult for me to witness, I knew what to do,” she says.

In contrast, Teno says, in her father’s final hours, he was admitted to a hospice residence. Such residences often resemble a nursing home, with private rooms where family and friends can come and go, and with round-the-clock medical attention just down the hall.

Teno called the residence experience of hospice a “godsend.” But an inpatient facility is rarely an option, she says. Patients have to be in bad shape for Medicare to pay the higher in-patient rate that hospice residences charge. And by the time such patients reach their final days, it’s often too much trouble for them and the family to move.

Hospice care is a lucrative business — now the most profitable type of health care service that Medicare pays for. According to Medicare data, for-profit hospice agencies now outnumber the nonprofits that pioneered the service in the 1970s. But agencies that need to generate profits for investors aren’t building dedicated hospice units or residences, in general, mostly because such facilities aren’t profitable enough.

Joe Shega, chief medical officer at for-profit Vitas, the largest hospice company in the U.S., insists it’s the patients’ wishes, not a corporate desire to make more money, that drives his firm’s business model. “Our focus is on what patients want, and 85 to 90 percent want to be at home,” Shega says. “So, our focus is building programs that help them be there.”

For many families, making hospice work at home means hiring extra help.

‘I guess I’ve just accepted what’s available’

At the kitchen table of her home outside Nashville, hospice patient Jean McCasland is refusing, on the day I visit, to eat a spoonful of peach yogurt. Each morning, nurse’s aide Karrie Velez pulverizes McCasland’s medications in a pill crusher and mixes them into her breakfast yogurt.

“If you don’t, she will just spit them out,” Velez says.

Like a growing share of hospice patients, McCasland has dementia. She needs a service that hospice rarely provides — a one-on-one health attendant for several hours, so the regular family caregiver can get some kind of break each day.


John McCasland (right) of Goodlettsville, Tenn., hired a private caregiver to help with his wife, Jean (left) who suffered from dementia for eight years. Even when hospice took over, he still found he needed the extra help from Karrie Velez (center). Jean died in October after 13 months on home hospice.

When Velez is not around, John McCasland — Jean’s husband of nearly 50 years — is the person in charge at home.

“I have said from the beginning that was my intention, that she would be at home through the duration, as long as I was able,” John says.

But what hospice provided wasn’t enough help. So he’s had to drain their retirement accounts to hire Velez, a private caregiver, out-of-pocket.

Hospice agencies usually bring in a hospital bed, an oxygen machine or a wheelchair — whatever equipment is needed. Prescriptions show up at the house for pain and anxiety. But hands-on help is scarce.

Medicare says hospice benefits can include home health aides and homemaker services. But in practice, that in-person help is often limited to a couple of baths a week. Medicare data reveals that, on average, a nurse or aide is only in the patient’s home 30 minutes, or so, per day.

Jean McCasland’s husband hasn’t complained. “I guess I’ve just accepted what’s available and not really thought beyond what could be,” John says. “Because this is what they say they do.”

Families rarely consider whether they’re getting their money’s worth, because they’re not paying for hospice services directly: Medicare gets the bills. John keeps his monthly statements from Medicare organized in a three-ring binder, but he’d never noticed his agency charges nearly $200 a day, whether there is a health provider in the home on that day or not.

That daily reimbursement also covers equipment rentals and a 24-hour hotline that lets patients or family members consult a nurse as needed; John says that gives him peace of mind that help is a phone call away. “There’s a sense of comfort in knowing that they are keeping an eye on her,” he says.

The rate that hospice charges Medicare drops a bit after the patient’s first two months on the benefit. After reviewing his paperwork, John realizes Medicare paid the hospice agency $60,000 in the first 12 months Jean was on hospice. Was the care his wife got worth that?

“When you consider the amount of money that’s involved, perhaps they would provide somebody around the clock,” he says.

Sue Riggle is the administrator for the McCaslands’ hospice agency, and says she understands how much help patients with dementia need.

“I think everybody wishes we could provide the sitter-service part of it,” says Riggle. “But it’s not something that is covered by hospices.”

Her company is a small for-profit business called Adoration; she says the agency can’t provide more services than the Medicare benefit pays for.

I checked in again with John and Velez (Jean’s long-time private caregiver) this winter. The two were by Jean’s side — and had been there for several days straight — when she died in October. The hospice nurse showed up only afterward, to officially document the death.

This experience of family caregivers is typical, but often unexpected.

‘It’s a burden I lovingly did’

“It does take a toll” on families, says Katherine Ornstein, an associate professor of geriatrics and palliative medicine at Mount Sinai Hospital in New York, who studies what typically happens in the last years of patients’ lives. The increasing burden on loved ones — especially spouses — is reaching a breaking point for many people, her research shows. This particular type of stress has even been given a name: caregiver syndrome.

“Our long-term care system in this country is really using families — unpaid family members,” she says. “That’s our situation.”

A few high-profile advocates have even started questioning whether hospice is right for everybody. For some who have gone through home hospice with a loved one, the difficult experience has led them to choose otherwise for themselves.

Social worker Coneigh Sea has a portrait of her husband that sits in the entryway of her home in Murfreesboro, Tenn. He died of prostate cancer in their bedroom in 1993.


Coneigh Sea is a social worker from Murfreesboro, Tenn., who cared for her husband as he died on home hospice. Now, she wants to make sure her children don’t do the same for her.

Enough time has passed since then that the mental fog she experienced while managing his medication and bodily fluids — mostly by herself — has cleared, she says. But it was a burden.

“For me to say that — there’s that guilt,” she says, then adds, “but I know better. It was a burden that I lovingly did.”

She doesn’t regret the experience, but says it is not one she wishes for her own grown children. She recently sat them down, she says, to make sure they handle her death differently.

“I told my family, if there is such a thing, I will come back and I will haunt you,” she says with a laugh. “Don’t you do that.”

Sea’s family may have limited options. Sidestepping home hospice typically means paying for a pricey nursing home, or passing away with the cost and potential chaos of a hospital — which is precisely what hospice care was set up to avoid.

As researchers in the field look to the future, they are calling for more palliative care, not less — even as they also advocate for more support of the spouses, family members and friends who are tasked with caring for the patient.

“We really have to expand — in general — our approach to supporting caregivers,” Ornstein says, noting that some countries outside the U.S. pay for a wider range, and longer duration of home health services.

“I think what we really need to do is be broadening the support that individuals and families can have as they’re caring for individuals throughout the course of serious illness,” Ornstein says. “And I think that probably speaks to the expansion of palliative care in general.”

Complete Article HERE!

A 97-Year-Old Philosopher Ponders Life and Death: ‘What Is the Point?’

In his 1996 book about death, Herbert Fingarette argued that fearing one’s own demise was irrational. When you die, he wrote, “there is nothing.” Why should we fear the absence of being when we won’t be there ourselves to suffer it?

Twenty years later, facing his own mortality, the philosopher realized that he’d been wrong. Death began to frighten him, and he couldn’t think himself out of it. Fingarette, who for 40 years taught philosophy at the University of California at Santa Barbara, had also written extensively on self-deception. Now, at 97, he wondered whether he’d been deceiving himself about the meaning of life and death.

“It haunts me, the idea of dying soon, whether there’s a good reason or not,” he says in Andrew Hasse’s short documentary Being 97. “I walk around often and ask myself, ‘What is the point of it all?’ There must be something I’m missing. I wish I knew.”

Hasse, Fingarette’s grandson, turned the camera on the philosopher in the last months of his life. The two were very close—when Hasse was a child, Fingarette would invent stories and record them on tape to send to his grandson, who lived 300 miles away, so that he could listen to them before bed. “My grandfather was one of the most thoughtful men I’ve ever met,” Hasse told me.

Being 97 is a poignant film that explores the interiority of senescence and the struggle of accepting the inevitable. Hasse quietly observes the things that have come to define his grandfather’s existence: the stillness of time, the loss of ability, and the need to come to terms with asking for help. “It’s very difficult for people who have not reached a state of old age to understand the psychology of it, what is going on in a person,” Fingarette says.

In one scene, Fingarette listens to a string quartet that was once meaningful to his late wife. He hasn’t heard the piece since her death seven years earlier—“her absence is a presence,” he says in the film—and becomes overwhelmed with grief.

Hasse made the artistic choice to omit his voice from the film, so while he was filming the scene, he had to stifle the urge to comfort his grandfather. “It’s very difficult to watch anyone in that kind of pain and not be able to console them, especially someone you love so dearly,” Hasse said. “I found myself sitting just a few feet away from him, unable to reach out because there was a camera between us. All I wanted to do was put a hand on his shoulder, embrace him, be with him in his pain.” After what felt to Hasse like an eternity, the filmmaker handed his grandfather a tissue to wipe away his tears. The scene ends just before this happens.

Fingarette died in late 2018. Just weeks earlier, Hasse had shown him the final cut of the documentary. “I think it helped give him perspective on what he was going through,” he said. “He loved talking about what a mysterious process it had been to film all these little moments of his life and then weave them together into a work that expressed something essential about him.”

The day before he died, Fingarette uttered his final words. After spending many hours in silence with his eyes closed, Hasse said, his grandfather suddenly looked up and said, “Well, that’s clear enough!” A few hours later he said, “Why don’t we see if we can go up and check it out?”

“Of course, these cryptic messages are up to interpretation,” Hasse said, “but I’d like to believe that he might have seen at least a glimpse of something beyond death.”

In the film, Fingarette admits that there “isn’t any good answer” to the “foolish question” of understanding mortality. “The answer might be … the silent answer.”

There is beauty and joy at the end of life, too

By Sarah Gray

What people don’t understand is the beauty and joy to be found at the end of life. When I tell people I work at a hospice, they often say “that must be so hard.” But my favourite thing is hearing people’s stories, their experiences, their successes, their failures – the things that life has taught them. I love helping them share these stories with their family members. It helps the family members keep their loved one alive in their memories after he or she dies.

I had a husband of a resident come in six months after she had died to say that he received a Christmas card from her, written to him while in hospice. He was tearful, but so incredibly grateful for this gift. He said the card helped keep her alive for one last Christmas.

Hospice workers encourage conversations about things that want to be said and heard. We create time for families to connect, laugh and cry together. Mostly, we help create a legacy of the resident that will remain with their family.

We have helped someone write letters to each of her children. We have sung favourite songs, played favourite games. We have celebrated birthdays, births, marriages, vow renewals. We have rolled people in their beds out onto the patio to sit in the sun. Often, this is their first time outside the four walls of a hospital or bedroom in months. How amazing it is to have such a thoughtfully designed building that can make this possible – feeling the warmth of the sun directly on their skin, hearing the birds chirping from the nearby feeder and breathing in the fresh air. I see how it provides the resident and their family with a sense of normalcy. This is where the best conversations happen. Families can forget, for a moment, about what is to come, and just enjoy the present.

Hospice is a place that collects nurses and personal support workers such as me. The emotionally challenging work we do weans out the people who think it’s just a job. You do not just show up for a shift, put in the time, and clock in and out. You are responsible for providing this human being, who has lived a whole life, with the care and dignity they deserve as they finish it. We help ensure that all loose ends are tied. Sometimes, these things are big, such as arranging a visit from a miniature pony that one of our residents used to show. Sometimes they are small, such as staff sitting at the bedside of a resident who doesn’t have any family, holding their hand, so they don’t die alone.

I have spent time working in hospitals, in long-term care and in the community as I searched for a place where the work that I did matched my beliefs of patient-centred care and individuality. After my first day at the hospice, I knew I had finally found my match. The loss of the residents we care for like family does not take a big piece of us with them but, rather, fills us with purpose and joy. The work we do gives us so much back that the word “rewarding” doesn’t even scrape the surface.

I began working at the hospice in May, 2017. As much as I love the work and what we accomplish, I could never have imagined needing it myself. Shortly after I started, my father was diagnosed with cancer. Soon we were faced with the decision I have seen so many other families struggle with: Do we settle for adequate care in the comfort of our home or do we move to the hospice where we will receive excellent care but in an unfamiliar location? The decision was easy for me, but not so much for my mom. She was afraid that moving him to hospice meant she was giving up her ability to care for her husband. But my mom was relieved to discover that she could still conduct much of the care, even in our facility. She did not have to sacrifice one for the other. With the 24/7 nursing and physician support, Dad – after eight months of suffering from his illness – finally had some peace.

During this time of comfort, he was able to give back to us something we will carry with us forever. He called us all in, on his last good day, told us all how much he loved us and reassured us that he never suffered. He was able to leave me with a recording, telling me what our relationship meant to him and that he would be with me through all of the big life events that he would now miss.

The hospice isn’t a place where people come to die. It is where they come to live – to live well for the little time they have left. It is a place of celebration, connection, comfort and support. It is a place of safety for the dying and the grieving. Experiencing such care with my father has only fuelled my passion to ensure that as many people as possible can have a similar experience.

Complete Article HERE!

My 92-Year-Old Father Didn’t Need More Medical Care

Ordering up more tests and surgeries for dying patients is easy. Getting patients the end-of-life care they deserve takes much more effort.

By

My 92-year-old father fell one Saturday night a few months ago. My mother could not pick him up. Her brother was not answering his cellphone, so she called 911. An ambulance crew brought him to the hospital.

The emergency-room physician ordered a CT scan. A spot on the scan worried him, so he ordered an MRI, which confirmed that a tumor the size and shape of a pear was occupying the frontal lobes of his brain. Meanwhile, a chest X-ray gave the physician some reason to suspect pneumonia—the image of the lungs looked cloudy, though it lacked the focal infiltrates that usually signify that condition—so he admitted my father to the hospital.

I took the first flight from Washington, D.C., and arrived in his room at a suburban-Chicago hospital at about 9 a.m. He was sitting in a chair, and all sorts of white wires were emerging from under his flimsy hospital gown. His index finger, because of the oxygen monitor attached to it, glowed like E.T.’s. Still, my father was acting like himself. When I entered the room, he mischievously needled me: “How are you doing, schmucko?”

The monitor above his bed showed a regular heart rate and oxygen saturation of 100 percent. The IV pole towering over him showed two empty bags of antibiotics.

I squeezed my dad’s hand, and we talked for about 20 minutes. Then I stepped out of the room to find the doctor to ask some questions. Standing at the nurses’ station, I was introduced to a neurosurgeon and a neuro-oncologist, who were ready to talk to me about my father’s condition and treatment options.

My father had a large brain tumor that could not be cured and would end his life. No neurosurgeon or oncologist could change the inevitable. Especially in light of his age, any intervention that involved drilling into his skull and biopsying or removing part of such a big tumor would only worsen his quality of life. We didn’t want to interfere with him talking with his children and grandchildren and playing with his great-grandchildren during the time he had left.

But no one had taken the time to ask him about his wishes regarding medical treatment, even though he was competent to make decisions and was himself a physician. No one asked my mother and brother, who were with him in the emergency room and at the hospital, if he had an advance-care directive or wanted to have a do-not-resuscitate order. My father, a pediatrician, was one of those doctors who hated getting any medical care. Fifteen years before, he had walked around for three weeks insisting that the pain at the bottom of his rib cage was just acid indigestion. Eventually, he consented to go to his internist and was diagnosed with a heart attack, which required a bypass operation. Everything about the way he’d lived meant he certainly did not want any brain surgery with no chance of a cure. He wanted to die at home having shared his final days with his family.

Since the mid-1980s, I have worked to make this type of end-of-life care possible. I am a physician too. Once my father was admitted to a hospital, it took all my expertise and experience to arrange the kind of care he needed—and prevent the medical system from taking over and prescribing unnecessary interventions.

It was easy for the hospital physician to call a neurosurgeon and neuro-oncologist and for them to assess my father early on a Sunday morning before I arrived. But when I asked if we could get my father a palliative-care consult on Sunday, the answer was a definitive no. All we got was the number of the hospital’s palliative-care service; we had to call the next day, during normal business hours, to arrange a future consultation.

It was easy for the physician to prescribe my father two antibiotics for his supposed pneumonia even though he had none of the symptoms—a fever, ugly-looking phlegm, shortness of breath. Indeed, he was comfortably breathing room air with 100 percent oxygen saturation, which people with pneumonia typically can’t do. But it was impossible for the physician to order an in-home aide to help my father shower, get to and from the bathroom, and navigate the stairs to the living room and kitchen.

It was easy for my mother to call 911 and have him transported to the hospital. But if he fell again, there would be no 911-like number for my mother to call for urgent assistance short of EMTs and ambulances.

It would be easy for the emergency-room physician to admit my father again, and even put him in the intensive-care unit. But no one suggested that he and my mother get mental health care or see a grief counselor to cope with his new terminal diagnosis.

The hospital was no place for my father to spend his last days. To thwart the medical system’s momentum to lard on ever more costly, unnecessary, and unwanted interventions—and to convince the medical staff we were serious about no—I took my father’s oxygen monitor off his finger, disconnected his cardiac monitor, insisted that the nurse remove his IV, and asked the physician to discharge him as soon as possible.

Beyond a suggestion that we find a home-care agency to call, the hospital offered no assistance in getting him help at home. Ironically, the aide transporting him out of the hospital volunteered that she knew someone who was available to provide home care. Through my father’s former nurse and someone she knew, we ended up getting a talented and kind set of cousins—immigrants from the Philippines—who were able to provide care.

Despite the medical system, my father did avoid further trips to the hospital, an ICU admission, and more antibiotics and machines. He spent the rest of his time at home and was able to say goodbye to everyone. And being at home was cheaper. We still don’t have all the bills, but the tab just for about 12 hours in the hospital came to $19,276.83. In contrast, the more than 200 hours of home care he got over the next 10 days cost only $6,093.

Many Americans are puzzled about why end-of-life care costs are so high, and why physicians cannot seem to reduce them. My father’s story is the answer.

It has less to do with physicians’ and hospitals’ financial incentives to admit more patients and perform more medical interventions, and more to do with the effort required to order and provide human care. For providers, ordering tests and consultations and prescribing antibiotics is easier than listening to and diagnosing the particular needs of the person in front of them. It is easier for the medical system to marshal all sorts of costly interventions—MRI scans, hospital admissions, neurosurgeons, cancer chemotherapy, and the rest—but harder, if not impossible, to accept the inevitable and provide symptom management, grief counseling, and home care to patients and their family. Until the system takes account of the whole patient and provides the whole package of humane care as the default—so that it’s routine and made available 24/7 with one physician’s order, just as chemotherapy or an MRI would be—Americans will not be able to finally change end-of-life care and reduce those costs.

A terminal diagnosis is inherently traumatic for patients and their families. My father’s experience at home before his death needs to become the standard of care. And not just for patients with pushy sons who have medical training and know how to speak with physicians, disconnect cardiac monitors, and firmly refuse the interventions that our health-care system is so predisposed to offer.

Complete Article HERE!

Dying young:

‘It’s not what you think’

Joe is 34 and is facing his own death. He was given a terminal cancer diagnosis and has already lived longer than doctors predicted. He tells Leah how dying was nothing like he had anticipated, and he and his friends discuss the impact this unexpected turn has had on how they view life

The woman whose job it is to prepare people to die

She arranges everything, from finding long lost families to organising organ donation

by Abbie Wightwick

 

She’s only 26 but Claire Wretham is employed by a Welsh hospice to help people face death.

She is the youngest person in any of Marie Curie’s nine hospices nationwide in the role.

Watching her own grandmother have  “a beautiful death” inspired her to help others do the same.

“We all deserve a good death that celebrates life. I am helping people feel at peace,” she said.

As full time spiritual care co-ordinator at Marie Curie Hospice, Cardiff and the Vale , Claire answers any questions patients and their families have about life’s greatest mystery.

Marie Curie spiritual care coordinator Claire Wretham with her grandparents Maura and John Brosnan. Maura’s death in 2016 inspired Claire to take up her post.

“My grandmother died at home, a really beautiful death with all her family around her. We were able to facilitate for her the perfect death.

Penarth with everything from tracing lost loved ones to special religious or cultural requests, officiates at funerals and goes to local mosques,synagogues and church groups to talk about death and dying.

In an increasingly secular and diverse society her role at Marie Curie has replaced the traditional one of chaplain, although Claire still uses that term when first meeting patients.

“I introduce myself as chaplain because it really is a modern interpretation of that,” she explained.

“My age is mostly irrelevant. People often comment on the fact I am young but I don’t think it hinders my role.

“People my age group see the world differently and approach things in a different way.

“Part of my role is asking people “what makes you you, how would you describe yourself and how do you find peace?

“As younger people we often have lots of spaces and experiences to express ourselves, but some older people don’t feel the same freedom to express themselves, so I ask “who are you, what makes you you and what makes you comfortable and at peace?.”

A practising Christian, Claire was appointed to the job two years ago and is an “allied health professional”, not a medic, although she knows and can explain what may happen during dying and immediately after.

Her role as spiritual adviser was created in response to research that Marie Curie did in 2015 investigating how to improve access to palliative care for people with dementia, learning disabilities and people with different or no religious beliefs.

Sarah Lloyd-Davies, hospice manager at Marie Curie Hospice, Cardiff and the Vale, explained: Hospice care and chaplaincy services have long been rooted in the Christian tradition, as both developed at a time when Christianity was the majority religion in the UK.

“As the country has grown more diverse there has also been a trend in growing numbers of people identifying as nonreligious.

“The hiring of a spiritual care coordinator to replace the traditional chaplain role at the Marie Curie Hospice Cardiff and Vale reflects the feedback from our local community, which recognises that one person and one approach cannot meet everyone’s spiritual needs.

“In order to make sure our services are truly inclusive and person-centred, we need to focus on connecting with belief-based communities and exploring new ways of providing spiritual care so we can ensure people feel supported in the best way for them at the end of their life.

Whatever background people come from death and dying are still taboo subjects which Claire must help them face.

“A lot of my job is myth busting and explaining to people how it works at the hospice and what they can expect as they come to the end of their life,” the 26 year-old said.

“Questions I would normally ask are whether they have any spiritual or religious needs and whether they have a faith or anything that’s a source of comfort.

“If they are religious I will discuss that with them – for instance if they are Catholic and want the last rites I liaise with their priest, if they are Muslim and want their bed facing Mecca and halal meals my job is to arrange that and liaise with nursing staff about it.”

There is “no formula or prescription” for talking about death so Claire begins with a few questions.

“It’s about asking questions to get people to explore death or go away and think about it.

“The sort of questions I’ll ask are things like – have you got any unfinished business or anything you want to tie up? That can be relationships, writing a will, funeral planning, making amends with estranged family members , and how we can help with that, if we can.”

When patients tell her they are scared of dying she tries to remove some of the mystery around it to reassure.

“If someone is scared of dying a big part of it, from my point of view, is explaining what will happen when they die.

“There are lots of misconceptions about pain relief. They want to know what it will feel like. I explain that they will probably just fall asleep more.

“I explore with them what they think that will be like. There is nothing you can say really, ultimately it’s something people form their own ideas about.

“I may also ask people what they want their legacy to be. Some people think there is nothing after you are dead so I’d ask them how they want to be remembered.”

But she doesn’t push it if people don’t want to talk.

“We live in a culture where it’s normal to talk about things but the idea of a chaplaincy and spiritual support is so alien to some people that they say no, they don’t want to talk to me.”

As she doesn’t have all the answers Claire tries to keep things practical when explaining what happens after death in a hospice.

“I know what a dead body looks like, where you go after death and what the crematorium looks like.

“My main technique is to remove any confusion. I do ask people if they are frightened and how I can help them not feel afraid.

“Most of the time people are worried about “what’s happening next and what about the pain?”

“I think death is so difficult to talk about because we don’t see death often. The majority of deaths happen in hospital. People don’t know what death looks like.

“For us in a hospice a huge part of our role is pulling the curtain on that. Lots of people come in asking really big questions and having misconceptions.”

These include controversy and suspicion surrounding syringe drives to administer pain relief and the mistaken beliefs about how they are used.

“People are horrified by the syringe driver. It’s in a locked box and nurses replenish pain killers. It is controlled pain relief. Some people think it is a death sentence, but it’s not. Sometimes people have a syringe driver for pain relief and then have it removed.”

“On the other hand some people say “can I have the drugs now?”. That’s not legal and not what hospices are about.”

“When we talk to people here about donation it’s usually only corneas because they can’t donate anything else. Some people say “you can take anything but not my eyes, but I have watched eyeball removal and it is really amazing because one cornea can be used to help eight people.”

It is Claire’s job to arrange any donations. She recalled one case when she arranged for a motorbike to collect the brain of a patient with motor neurone disease who had requested it be donated to medical science – something that had to be arranged within 72 hours.

“I spent all day organising brain removal and that afternoon someone came down from London on a motorbike and took it back for donation to medical science.”

Although her job does involve these practical matters it is also a matter of listening to people at what can be the hardest time of their lives.

“My job is varied Once a man came in and said his father had died here 28 years ago. He said he had never visited Wales and now lives in Canada but had flown into Cardiff to see where his father died.

“I showed him around the hospice and talked to him about his grief and about Penarth. He was very tearful, he had flown all the way from Canada to see where his dad died, but he was able to resolve his grief.”

Surrounded by grief and death on a daily basis Claire says it is not morbid but a privilege to help people.

“Death happens to everyone. It’s coming to all of us. We should look to normalise it.”

Complete Article HERE!

LGBTQ Elders Are More Likely to Be Socially Isolated, Suffer from Dementia Than Straight Peers

By

A new report by University of California San Francisco is making a big claim: LGBT people are at heightened risk of dementia. Additionally, LGBT elders are more likely to be socially isolated than their straight cisgender counterparts, and this social isolation can lead to more physical and mental health problems in comparison.

The new data was released at the 2019 Alzheimer’s Association International Conference (AAIC) in Los Angeles. Data was collected via mainly phone-based surveys across nine U.S. states. Approximately 44,000 adults aged 45 and older participated wherein roughly 3% of respondents identified themselves as a “sexual or gender minority.”

Another study presented at AAIC 2019 investigated the effectiveness of a first-of-its-kind Alzheimer’s intervention designed specifically to improve physical function and independence for LGBT older individuals with dementia and their caregivers.

The study, conducted by researchers at the University of Washington, showed the importance of tailored interventions and strong community partnerships in designing care for LGBT individuals.

“Much too little is known about Alzheimer’s disease and dementia in the LGBT community. In fact, the first data on the prevalence of dementia among sexual and gender minorities was reported only last year at AAIC 2018,” said Maria C. Carrillo, PhD, Alzheimer’s Association chief science officer.

A new report by University of California San Francisco is making a big claim: LGBT people are at heightened risk of dementia. Additionally, LGBT elders are more likely to be socially isolated than their straight cisgender counterparts, and this social isolation can lead to more physical and mental health problems in comparison.

The new data was released at the 2019 Alzheimer’s Association International Conference (AAIC) in Los Angeles. Data was collected via mainly phone-based surveys across nine U.S. states. Approximately 44,000 adults aged 45 and older participated wherein roughly 3% of respondents identified themselves as a “sexual or gender minority.”

Another study presented at AAIC 2019 investigated the effectiveness of a first-of-its-kind Alzheimer’s intervention designed specifically to improve physical function and independence for LGBT older individuals with dementia and their caregivers.

The study, conducted by researchers at the University of Washington, showed the importance of tailored interventions and strong community partnerships in designing care for LGBT individuals.

“Much too little is known about Alzheimer’s disease and dementia in the LGBT community. In fact, the first data on the prevalence of dementia among sexual and gender minorities was reported only last year at AAIC 2018,” said Maria C. Carrillo, PhD, Alzheimer’s Association chief science officer.

“As expanding research efforts continue to teach us more about the variability of Alzheimer’s and other dementias — for example by sex, race, genetics and exposure to environmental factors — the Alzheimer’s Association will fund, and encourage others to fund, more studies in LGBT and other diverse populations,” Carrillo added.

Increased Risk for Subjective Cognitive Decline Among Sexual and Gender Minorities
Few studies have investigated the symptoms and disease progression of Alzheimer’s and other dementias in the LGBT community.

To examine these associations, Jason Flatt, PhD, MPH, assistant professor at the Institute for Health & Aging at the University of California, San Francisco, and colleagues analyzed data from the 2015 Behavioral Risk Factor Surveillance System (BRFSS), a large phone-based survey led by the Centers for Disease Control and Prevention.

The study analyzed data from 44,403 adults aged 45 and older across nine states in the U.S. (Georgia, Hawaii, Illinois, Minnesota, Nevada, Ohio, Virginia, West Virginia, and Wisconsin) that participated in the 2015 BRFSS optional modules on the Healthy Brain Initiative, which included subjective cognitive decline and Sexual Orientation and Gender Identity.

Roughly three percent of participants (1,253) identified as a sexual or gender minority (SGM). Subjective cognitive decline was defined as self-reported confusion or memory problems that have been getting worse over the past year.

The researchers found that more than 14% of SGM participants reported subjective cognitive decline, significantly higher (p<0.0001) than the 10% rate among cisgender heterosexual participants. Even after adjusting for factors such as income, age and race, SGM participants were 29% more likely to report subjective cognitive decline.

More research is needed to understand why subjective cognitive decline may be higher in SGM individuals.

“Given that 1 in 7 adults who identified as a sexual or gender minority reported subjective cognitive decline, it is critical that more opportunities exist for people in these communities to receive regular evaluation for cognitive impairment and Alzheimer’s disease,” Flatt said. “There is also a need for greater education on Alzheimer’s risk, signs and symptoms, and training of health care providers to ensure inclusive and welcoming care for LGBTQ+ populations.”

“While we do not yet know for certain why sexual or gender minority individuals had higher subjective cognitive decline, we believe it may be due to higher rates of depression, inability to work, high stress, and a lack of regular access to healthcare,” Flatt added.

According to Flatt, less than half of SGM adults with SCD in the study talked to their health care provider about it. SGM adults with SCD were also more likely to report that they had to give up day-to-day activities (39% vs. 29%, p=0.003) and needed help with household tasks (44% vs. 35%, p=0.01) than cisgender heterosexual participants. Both groups were similar in terms of talking to their health care provider about their subjective cognitive decline.

First Study of an LGBT-Specific Alzheimer’s and Dementia Intervention
To advance research into Alzheimer’s in the LGBT community, Karen Fredriksen-Goldsen, PhD, professor and director of Healthy Generations Hartford Center of Excellence at the University of Washington, created the Aging with Pride: Innovations in Dementia Empowerment and Action (IDEA) study.

A multisite study in Seattle, San Francisco, and Los Angeles, Aging with Pride: IDEA is the first federally-funded study dementia intervention specifically designed for LGBT older adults with dementia and their caregivers.

The researchers had previously identified unique risk factors of LGBT older adults living with dementia through the first longitudinal study of this population (Aging with Pride: National Health, Aging, and Sexuality/Gender Study). Using longitudinal data with three time points (2014, 2015 and 2016), modifiable factors predicting physical functioning and quality of life (QOL) among LGBT older adults with dementia (n=646) were identified.

LGBT older adults living with dementia were significantly more likely to live alone (nearly 60%), not be partnered or married (65%), not have children (72%), and not have a caregiver (59%), when compared to older non-LGBT adults living with dementia. Previous experiences of discrimination and victimization (b=-0.19, p<.001) were negatively associated with QOL among LGBT older adults living with dementia. Socializing with friends or family (b=1.11, p<.05) was positively associated with QOL, and physical activity (b = 0.26, p<.001) were associated with better physical functioning.

As reported at AAIC 2019, Aging with Pride: IDEA includes a tailored approach in which trained coaches identify and modify challenging behaviors that are adversely affecting older adults living with dementia and their caregivers, either of whom are LGBT. The coaches delivered an individualized program of exercise, and behavioral and coping strategies designed to improve physical function, independence and QOL.

The exercise intervention is a low-impact physical exercise program including nine one-hour sessions over six weeks designed to improve physical functioning and maintain independence. The behavior and coping strategies include: techniques for working with LGBT-specific trauma, identity management and disclosure of their LGBT identities to providers and others, plus support engagement in the LGBT community and dementia services.

Testing of the intervention is now underway and will be delivered to 225 pairs of LGBT older adults living with dementia and their caregivers.

“Given their lifetime experiences of victimization, discrimination and bias, many LGBT older adults forgo seeking needed medical care,” said Fredriksen Goldsen. “LGBT people living with dementia and their caregivers often have difficulty accessing information and support services, which can be especially challenging when memory loss and dementia enter the equation.”

Complete Article HERE!