Living With Ghosts

By Mary O’Connor

“What’s your name?”
“Mary.”
“Mary what?
“O’Connor.”
“From where?”
“From here.”
“No, you’re not.”
“I’m your daughter.”
“No, you’re not. What’s your name? . . .”
“We should get him a tape recorder.”
“He’s human. He needs a human voice.”
“But his is almost gone.”
“That doesn’t matter.”

Staring into the face of an undead ghost in a green tweed jacket and flat-cap over toast and cornflakes is unnerving at the best of times; and traumatic at the worst. Especially when that ghost is your father. And the cornflakes have gone soggy.

But unlike gothic novels or films where ghosts happily offer themselves up as symbols of repressed memories, traces of crimes against innocents, and (usually) murderous pasts, this ghost has never crossed over into the realm of the metaphorical. Inconveniently, it decides to remain very, very human. Actually, that depends on your definition of human.

Even more inconvenient is the fact that this ghost refuses to follow the script and disintegrate with the morning light. Instead, it prefers to haunt the modern comforts of an electric armchair; swapping dreary castles for daytime television and crumbling dungeons for motorised beds.

And that’s just the start of my day living with a living ghost. Or Alzheimer’s as it’s otherwise known. Or, more correctly, my father’s Alzheimer’s.

Living with Alzheimer’s, both as a carer and sufferer, is a growing phenomenon in the UK. Often confused with dementia, Alzheimer’s refers to a physical disease which affects the brain while dementia is simply a term for a number of symptoms associated with the progressive decline of brain function. These symptoms can include memory loss, difficulty with thinking and problem solving, and challenges with language and perception. There are over 400 types of dementia—with Alzheimer’s and vascular dementia as the most common forms. According to the Alzheimer’s Society of the UK, dementia is now the leading cause of death in the UK with someone developing it every three minutes. Alzheimer’s is classified as a “life-limiting” illness according to the NHS, but sufferers can live for many years after the initial diagnosis, depending on the progression of the disease. Divided into three stages, early, middle, and late, the symptoms of Alzheimer’s gradually become more severe as the disease progresses and more parts of the brain are affected.

In the early stages, having Alzheimer’s as a companion wasn’t too unpleasant; the emptiness hadn’t fully taken over and I had more human than spectre to talk to. I could still pretend to have a normal(ish) life with only the minor inconvenience of a (mostly) present parent, despite the occasional wandering through doors unexpectedly and lunatic outbursts. The human part kept his smiling eyes, watching the world orbit around the sweat-stained tea-pot and apple tart. But the Alzheimer’s relentless erasure of my father left a morbid spectre sitting in his chair at the kitchen table.

In the middle stages, my father’s personality and identity dropped away like discarded clothes. His manner of speech was the first to surrender to the disease. Forgetting words rapidly metamorphosised into hours of repetitive questioning, as if seeking to ground himself in concrete knowledge of the now while his fingers grabbed vainly at a slipping sense of reality. The final stages of the disease witnessed his childish cries for help without knowing what or who he wanted.

“Gone childish” is an archaic term that was once used to describe dementia and Alzheimer’s sufferers before these diseases were better understood. Capturing the vulnerability these diseases inflict on their sufferers, the phrase sums up the centrality of memory to the human experience. If our identities are formed by our experiences, and these experiences are stored in our memories, shaping who we are and how we make decisions, what can we do when we have no memory? Without a roadmap of precedence, how can you plan for the future or know yourself without knowing how you got to where you are now? Like children, Alzheimer’s sufferers lose a sense of the past and futurity. They become transfixed in the present like ghosts trapped in limbo.

The last stages of my father’s disease cemented his role in the family home as the new phantasm. Like a well-behaved, conventional ghost he punctuated our nights with night-walking, ghoulish shrieks, hallucinations, and knocking on doors at all hours while the day-time witnessed empty eyes peering out from behind the safety of a purple blanket. Innocent of blame, our ghost blocked our escape from the house. For fear of hurting himself, we couldn’t leave him alone but grew resentful for being held hostage by a madman with no memory or awareness of his own actions.

After being stripped of memory and identity, my father’s Alzheimer’s left a shell of body; a ghastly reminder of the person that had once inhabited it. Bereft of the markers of humanity, this animated mannequin asked, “What makes up a human? Is it the mind? Or the body? And what happens when you take one from the other?”

Researchers have identified the cause of Alzheimer’s as the build-up of abnormal structures in the brain called ‘plaques’ or ‘tangles’. These structures cause damage to brain cells and can block neuro-transmitters, preventing cells from communicating with each other. Over time, parts of the brain begin to shrink with the memory areas most commonly affected first. Why these build-ups occur or what triggers them is not yet understood, but researchers now know that it begins many years before symptoms appear.

Ancient Roman and Greek philosophers associated the symptoms dementia with the ageing process. However, it was not until 1901 when the German psychiatrist, Alois Alzheimer, identified the first case of the disease. Medical researchers during the twentieth century began to realise that the symptoms of dementia and Alzheimer’s were not a normal part of ageing and quickly adopted the name of Alzheimer’s disease to describe the pattern of symptoms relating to this type of neurological degeneration.

No physical markers like the puckered lines of surgery scars or the uneven hobble of a game leg signposted my father’s declining health. But the slow creep of this living death brought on grief long before his body was expected to fail. Without the essence of the person, all of their quirks and curiosities, which once animated a familiar body, how do you grieve for someone’s loss before they have died? And how do you cope with the guilt?

This type of grief is usually referred to as anticipatory grief. It is a type of grief that is experienced prior to death or a significant loss. Typically, it occurs when a loved one is diagnosed with a terminal or life-threatening illness, but it can also happen in the face of a personal diagnosis. However, it can often trigger feelings of guilt because people feel ashamed for grieving their loved one’s death before they are dead.

With my father’s memory gone, my connection with him was broken. During the later stages of the disease he forgot my name and my existence. Fading from my life, his body remained as a perverse mockery of the person that had once inhabited it. Now all that haunts me are the memories of peering over barley stalks before the autumn harvests at a grizzled old farmer in a flat cap and tweed jacket, a hand reaching out to help guide the walk home.

Complete Article HERE!

‘To be in a room with that much love

— it’s priceless’

by RACHEL SUN

Anne Ross doesn’t think about death the same way she used to.

As a volunteer hospice worker for over a decade, she said, the work profoundly impacted the way she views, and talks about, death.

Anne hadn’t planned to volunteer when she was first introduced to hospice, she said. When she first stepped foot into Bonner Community Hospice over 11 years ago, it was with her mother-in-law — a woman who had recently experienced a loss in California.

“I just couldn’t believe how compassionate they were,” she said. “I had suffered some loss in my life, a husband and a fiance, and I had never received any kind of grief support. So to see this in action, I definitely wanted to be a part of it.”

Often, hospice has a bad connotation said Tami Feyen, RN hospice manager. Despite offering a wide variety of services to people with terminal ailments and their families, hospice is often overlooked.

“I know a lot of people think ‘wow, hospice, that’s dark. You know, who would ever want to [do that], or find joy in that,’” Tami said. “But the reality is, it is really beautiful. It is just such a gift to be able to be at someone’s bedside, and work with them through the process of their decision making and seeing those things that are most important to them come forward and be executed as they move through their journey.”

The role of hospice

Most clients who come into hospice care are individuals with a terminal diagnosis of six months or less to live. Clients are often referred by their doctors, and hospice services are covered by Medicare and Medicaid and many private insurances.

The range of services hospice offers go far beyond what many people might expect, Tami said. Some include help with pain management or caregiving. But another role of hospice, she said, is to help clients make the most of their time and help fulfill final wishes.

“We’ve had a tattoo party, someone who always wanted to get a tattoo, and the means to do that was not something that she had,” she said. “We’ve had people go on a last boat ride on Lake Pend Oreille, because that’s where their heart and soul is.”

Other times, she said, the hospice reunited estranged families and helped people share final moments with their parents. The work isn’t just comfort care, she said.

“There’s a lot of psychosocial, spiritual, emotional support that goes into our care,” she said. “It’s truly the most unique specialty that I could ever think of being involved in.”

Stories from hospice care

On Anne’s first hospice case, she said, she came to spend time with an elderly man in an assisted living facility. His daughter had requested hospice care, although her father’s physical needs were already taken care of. So, Anne said, she would visit, and the two would watch golf on television.

“I wasn’t really sure why I was there, because obviously, they have a staff,” she said. “One time when I left, he said, ‘I enjoyed you today.’ And we had hardly spoken, but just having a person, you know, a presence there … that connection [makes a difference].”

Recently, Anne said, hospice helped people in her own life. Only a few weeks ago her aunt, who lived in Chicago, passed, she said. But before she did, a hospice with similar services to Bonner General’s helped her make the most of her last few months.

“My mom and my aunts all had a happy hour at five o’clock, a cocktail party, where they had a drink and [had] some fancy hors d’oeuvres. And they had an early Thanksgiving,” Anne said. “My sister arranged a Zoom cocktail party where all of her nieces and nephews got to see her and she got to ask us all questions. And she and her sisters usually would go up to northern Wisconsin in the fall to see the colors. And this year, the sisters came to her house and they had a fish fry, a prime rib dinner, and played games and laughed. And that was the weekend before she passed away.”

Mary Faux, a local resident, said her husband received hospice care after a referral from his doctor.

“I thought, he’s just saying that, my husband is going to live,” she said. “That was a Tuesday, and hospice came several times in the 11 days that he lived.”

During that time, she said, the staff helped her, her husband, and her daughter immensely.

“It made his death more tolerable,” she said. “Even if you feel like he’s not going to die immediately or even within six months, the comfort that they bring to you is so rewarding.”

Rusty McKitrick, a home health aide and staff member, also came to the hospice after seeing their work firsthand. One particular patient she helped, a young man with cancer, stands out.

“He was fairly young, his wife and he had been fighting this for quite some time. They were very hopeful that the cancer — they had beat it, that the cancer was gone after the last surgery. He was in therapy doing very well, and all of a sudden he hit a wall and took a spiral downwards,” she said. “He was had been sitting in a recliner for two days, in too much pain, his wife couldn’t get him out of the recliner. So we were able to get his pain under control. Get him out of the recliner. And he was comfortable and happy by the time I left. Joking, telling jokes, just really being able to be part of his family and do things. It made me feel good to be part of that.”

The work can be heartbreaking, Rusty said. But it’s also incredibly meaningful, to her as much as the people she helps.

“I think they probably impact my life and give my life meaning as much as I do them. They’re just — they will always be a part of my life, whether they’re here or not, [and] I will always remember them,” she said.

Serving the community

Every year, Bonner General Hospice serves about 150 clients through end-of-life care, Tami said.

Right now, it is often being used almost as an emergency service, she said.

“So many people aren’t seeing their providers right now,” she said. “So what we’re seeing right now, with ever more increase, is very, very end of life referrals the last hours the last days. And that’s so unfortunate because that person and that family do not get to really journey through their end of life in a healthy way.”

When hospice is brought in earlier, she said, there can be big benefits to families as much as the patient.

Tami recalled a young mother years ago who was dying of cancer and wanted to leave messages for her four children as they grew up. She had lost the ability to write, and so the hospice stepped in.

“We just kind of developed a means to have her record her letters to her kids in her own voice,” Tami said. “This is way back when, and I know we could do it so easy now, but it was kind of a feat back then. And so having that gift to her children was really pretty awesome.”

In addition to the roughly 150 clients, the nonprofit hospice also serves around 700 community members a year through grief and bereavement programs. They also host camp for children who have lost loved ones, and both group and one-on-one counseling free to the community, regardless of whether someone has been connected with hospice before.

Anne, who took one of the grief classes with her daughter a few years ago, said the program helped them both talk more openly about her late husband’s passing.

“[It] had a profound effect on our relationship and the way we viewed his death,” she said.

‘A good death’

Not every story is happy, Anne said. People suffer tragic deaths. But the support they get from hospice can help people have control over how they live the rest of their life, and help families to find peace.

Before coming to the hospice, Anne said, she didn’t talk about death so openly. Death, she said, was only something sad. During the last decade, she said, her work with the hospice has shifted that perspective.

“[Years ago], my first husband passed away, and he died in a hospital. And I had a dear friend with me. And after he died, she said, ‘I’ve never been at a death, but it is just as beautiful as birth.’ And I thought she was crazy … I didn’t see it. But now that I’ve been working with hospice, I see it clearly. It’s all about the love, you know, in a room where this family is just loving this person as they leave their lives,” Anne said. “We commemorate all these special occasions in our lives. birth, first day of school, graduation, marriage, anniversaries, but nobody talks about a good death. Maybe that sounds morbid, but to be in a room with that much love — it’s priceless.”

Complete Article HERE!

Hospices Work to Reach Underserved LGBTQ+ Communities

By Holly Vossel

The LGBTQ+ community has been among the groups historically underserved by hospice, with mistrust of the health care system at large and provider bias as leading roadblocks to quality end-of-life care. Hospice providers are increasingly working to better understand the LGBTQ+ population and improve access to care.

Issues of equity, inclusion and diversity have plagued the nation’s health care system. Providers of all walks are reaching deeper into the roots of disparities to understand barriers and expand care among underserved African American, Hispanic, Jewish and LGBTQ+ communities. While widespread data is scarce, available research indicates that the LGBTQ+ population is among those groups under-utilizing hospice care. According to a 2018 AARP study, 60% of the LGBTQ+ community are concerned about a lack of sensitivity to their needs among health care providers.

“When LGBTQ+ seniors need to access long-term care, most of them do not don’t feel safe and our health system in many places doesn’t make them feel safe,” said Ruth Thompson, national hospice medical director at Elara Caring during a session at the National Hospice and Palliative Care Organization (NHPCO) Interdisciplinary Conference. “We may have no idea that we’re taking care of people who are gay, lesbian, transgender and bisexual, but we are. It’s not unusual that they are not going to share with you that part of their personal history, which is really unfortunate because it’s who they are. The history of discrimination and poor education of the health care system really has had a profound effect on these people and compounded their fears. This population of people tend to have worse health outcomes as compared to their heterosexual and cisgender peers.”

With barriers such as patients’ fear of discrimination and general mistrust, hospice providers will need to build up awareness and break down biases around gender identity and sexual orientation to foster greater trust among underserved LGBTQ+ communities. A general lack of understanding and awareness among providers, along with stigmas, stereotypes and biases have been drivers of under utilization.

“No one is asking for special care or special treatment,” said Michael Kammer, medical social worker and bereavement counseling professional at Ohio’s Hospice of Dayton, during the conference session. “We just want care that takes into consideration the unique needs, concerns and experiences that we have had just like we do for any other minority population. We’re working on developing the awareness and ability to identify and join with people in the LGBTQ community. We need to shift our thinking about this from seeing the LGBTQ population as a special population to more inclusive care. Everyone needs the same specialized care, and it requires self-awareness on our part to shift how we perceive these groups and become aware of our own implicit biases, and being able to better interact with and support all our patients.”

Expanding education and awareness among hospice staff regarding the challenges, concerns and needs could extend reach for LGBTQ+ community members. Older LGBTQ adults often face issues such as economic insecurity, reduced caregiving support networks and misconceptions around sexual orientation and gender identity.

Hospice providers can improve access and experience of care by shifting organizational cultures and patient care practices, with executives leading the charge on deeper integration of LGBTQ+ education.

“In order to be successful and transform your organization’s culture, you must really start from the top,” said Kammer. “There needs to be buy-in at that executive leadership level. This requires a lifelong commitment, self-critique and self-evaluation and being culturally humble so that we can become aware of our implicit biases and mitigate those to provide truly person-centered care. This is not a one-and-done activity.”

Addressing gender identity and sexual orientation during the patient admission processes is one strategy toward greater LGBTQ+ inclusion in the hospice space. Providers will need to look beyond the scope of information on electronic health records to better understand how aspects such as gender identities and personal pronoun preferences can impact the experience and quality of care for LGBTQ+ patients.

Despite increasing advocacy, the field has much room to grow when it comes to improving cultural understanding and learning the specific social determinants of health for LGBTQ+ communities.

“People are struggling with LGBTQ+ issues that are impacting their psychosocial and spiritual situations, and it’s really critical that those patient discussions remain respectful,” said Thompson. “You can identify champions and have a team willing to stand up and make sure that people are having respectful conversations around care goals. When people are reaching the end of life, it’s important that they can be who they are and be with who they love. Those can really be challenges for the senior population because our LGBTQ+ elders are really the group of people who experienced a lot of that historical discrimination before the Gay Rights Movement many years ago. We’ve come a long way since then, but we still have a long way to go.”

Complete Article HERE!

How Death Doula Alua Arthur Gets It Done

By

In 2012, Alua Arthur quit her legal career to become a death doula. The problem was that she had no idea such a job existed. “All I knew was that there had to be a better way to give support during one of the most lonely and isolating experiences a person can go through,” she says. Now 42, she is a leader in the field of death work and has guided thousands of people and their loved ones through the end-of-life process. She has also trained hundreds of other death doulas through her company, Going With Grace, and is on the board of directors at the National End-of-Life Doula Alliance (NEDA)

This year, as COVID has forced so many Americans to cope with sudden loss and their own mortality, Arthur has been inundated with new clients and students as well as larger questions about how to handle constant grief. She lives in Los Angeles. Here’s how she gets it done.

On her morning routine:
I usually get up around 8:30 or 9:00 a.m. I’m a night owl, and it helps me in my work because people tend to die between 2:00 and 5:00 a.m. I’m not sure why; there are a lot of different theories about it. But I’m most awake and alert at that time. The witching hours. I love to burn my incense at 4:00 a.m. and greet the crows.

Most mornings I meditate right after I get up. After I meditate, I fill up my gallon jug of water and exercise. I need to sweat and move. I love anything where the instructor is like, “Faster! Go! Only ten more seconds!” Since we can’t do group fitness in person right now, I have to re-create it in my house. It doesn’t work quite the same, because I will stop and eat snacks in the middle of a video. But I’m trying. Exercise and meditation are the things that keep me sane and grounded. They’re the baseline.

On being drawn to end-of-life care:
Being around death has made me more honest. I see that what we don’t say chokes us as we die. People always think they have more time, and when they realize that they don’t, they have regrets about things they haven’t done. I try to do what I feel like doing right now. And if that means eating white-cheddar Cheetos for breakfast, I will. Which is what I did this morning. I won’t always be able to taste delicious things, so let me do it now.

On managing her clients:
I don’t take on more than one client at a time who is imminently dying, because I want to be on call for them. Whatever they need, I will do. When a client with just a couple of weeks or months left first comes to me, we’ll go through the long list of items to consider in death and dying, and then we’ll create a plan. That usually happens over the phone. Then I go to visit, put my hands on them, really see what their physical condition is, and see what kind of support they have.

I continue to visit every week or so until their condition starts deteriorating fast, and then I’m there more often. I might be there when they die, and if I’m not, I’ll come sit with their family or caregivers afterward until the funeral home comes. I may also help wrap up practical affairs — possessions, accounts, life insurance, documents. It’s exhausting for a family to have to think about that when they’re also grieving, and I’m equipped to help. I’ll sit on hold with insurance companies, make funeral arrangements, all that stuff.

Beyond those who are imminently dying, I often have several clients who need end-of-life planning consultations. I can take on a couple of those at a time. That could be someone who has just gone on hospice and it doesn’t look that bad yet, or someone who just received a diagnosis and wants to prepare.

On winding down after an intense day:
I’ll drink wine and hang out with a lover. I’ll go out dancing until 5:00 a.m. Sometimes I just want to shut the brain off after a long day, and the best way to do that is by spending time with friends and people who tickle me. But it’s also good to spend a lot of time alone, which is the default these days. I like silence.

On becoming a death doula:
I spent the bulk of my career in legal services in L.A., working with victims of domestic violence. Then there were some big budget cuts, and I wound up getting stuck doing paperwork in the courthouse basement. I was already depressed and burnt out, but it blossomed into an actual clinical depression. So I took a leave of absence and traveled to Cuba. While I was there, I met a German woman who had uterine cancer and was doing a bucket list trip. We talked a lot about her illness, and her death. She hadn’t been able to discuss a lot of those things before, because nobody in her life was making space for her to talk about her death. Instead, they’d say, “Oh, don’t worry. You’re going to get better.” I came back from that trip thinking I wanted to be a therapist who worked with people who were dying.

I applied to schools to become a therapist, but in the meantime, my brother-in-law got very sick. So I packed up and spent two months in New York with him. That experience gave me a lot of clarity on all the things we could be doing better in the end-of-life processes. It was so isolating and I couldn’t understand why. Everybody dies — so why does it feel so lonely? After that, I did a death doula program in Los Angeles, called Sacred Crossings, and then I founded my company, Going With Grace.

On leaving her law career (and a steady paycheck):
It wasn’t a hard decision to leave my job as an attorney. The challenging part had more to do with identity and what achievement means. I was born in Ghana, and we’re all raised to be doctors and lawyers and engineers. So I was going against societal expectation and parental expectation. It was also tough to be broke for a long time. My student loans were in forbearance. I spent a lot of nights lying on my mom’s couch wondering how I was going to make things work. If my friends were going out, they’d have to pay for me or else I couldn’t join them. To support myself while I was starting my business, I worked part-time jobs at a hospice and a funeral home.

Eventually, I started hosting small workshops about end-of-life planning. I charged $44 dollars for people to come together and learn how to fill out the necessary documents. Now I have my own doula training programs. I have about 100 students at the moment, all online.

On charging for her services:
I have to navigate the financial conversations with a lot of directness. Part of the challenge is that our society doesn’t see the financial value of having somebody be kind and supportive. Being able to hold so much compassionate space when somebody’s dying — that is a skill. It needs to be compensated highly.

On living with grief:
I’m constantly grieving with and for my clients and their family members, all the time. There’s no fixing it. I have to be present with my feelings and let them wash over me, in whatever expression they take. If I try to shut off that part of myself, it becomes much harder to function in everyday life. Grief doesn’t always look like crying. Sometimes it looks like anger, promiscuity, or eating everything under the sun. Like all things, it’s temporary.

On how COVID has changed her work:
We have to rely much more heavily on technology and remote communication. There’s also a lot more interest in the death doula training program. Death is on a lot of people’s minds, and I’ve seen a lot more people starting to do their end-of-life planning — mostly healthy people in their 40s with young kids. A lot of people have seen younger people die suddenly, and it’s changed their perspective.

On her own end-of-life plan:
I would love to be outside or by windows. I want to watch the sunset for the last time, and I want to have the people I love around, quietly talking, so that I know they’ve got each other after I leave. I want to have a soft blanket and a pair of socks because I hate it when my feet are cold. I want to smell nag champa incense and amber. And I want to hear the sound of running water, like a creek. I’d love to enjoy all those senses for the last time. And when I die, I want everybody to clap. Like, “Good job. You did it.”

I want my funeral to be outside, and I want all my jewelry to be laid out. As guests come in, they grab a piece and put it on. I want my body to be wrapped in an orange and pink raw silk shroud. They’ll play Stevie Wonder — “I’ll be loving you always” — and everyone will eat a lot of food and drink whiskey and mezcal and red wine. There will be colorful Gerber daisies everywhere, and they’ll take me away as the sun goes down. And when they put my body in the car, the bass will drop on the music, and there will be pyrotechnics of some sort. I hope my guests have a grand old time and dance and cry and hug each other. And then I want them to leave wearing my jewelry.

Complete Article HERE!

Caring For The Caregivers

By Nekee Pandya

When the United States recorded 100,000 deaths from the novel coronavirus, the New York Times (NYT) commemorated the lives lost by filling their front page with a list of the names of those who died, accompanied by descriptive phrases that gave small glimpses into their lives. Titled “An Incalculable Loss,” the piece helped remind us that those who perished from the virus were people, beloved members of our communities. Like many New Yorkers, I scrolled through the names on the list, trying to understand the scope of loss our city was experiencing. Like many New Yorkers, I came across a name I recognized. This name, however, wasn’t of a friend or family member, it was of one of the patients that I took care of when they got sick with COVID-19.

I work as a hospitalist at a large hospital in Manhattan. During the COVID-19 peak, I was redeployed to co-lead one of the pop-up intensive care units (ICUs) created to expand our ability to care for our sickest patients during the surge. It may not seem surprising that I came across the name of one of my patients on the NYT list, but the odds are actually exceedingly small. Although the article depicted an unimaginable amount of deaths over a few short months, the names represented only 1 percent of the total lives lost in the United States at that time. And while New York City has been the epicenter of the pandemic, Manhattan was relatively spared compared to the other NYC boroughs. And yet, we did not feel spared.

Within three weeks of admitting our first COVID-19 patient, we had filled all our existing ICUs with coronavirus cases and had started construction to create new ICUs to keep up with the number of critically ill patients. As one colleague described, it felt like we were imitating Wile E. Coyote as he frantically tried to lay down new train tracks before an oncoming train; as soon as a new ICU opened, it was filled within hours.

The name I came across in the article was one of my first patients in the newly created COVID-19 ICU where I was asked to work. As a hospitalist, I am trained as a doctor of internal medicine who cares for acutely ill hospitalized patients. Although I have worked in ICUs before, I am not critically care trained. Determined to provide my patients with the best care possible, I spent time training with our critical care colleagues, practicing procedures on mannequins, and watching countless videos aimed at brushing up on my ventilation management skills. I was partnered with an anesthesia attending and pulmonary critical care fellow to create a team that brought together different skills to ensure we could handle all aspects of the patients’ care.

Our 12-bed ICU was completely filled within 36 hours of its existence. The patient on the NYT list was one of five new patients with severe COVID-19 who came to us within four hours. We quickly realized that caring for these patients was a hospitalwide team effort. We had daily phone conferences to share our experiences, exchange ideas, and create new standards of care. We all became COVID-19-ists, united in treating just one disease. Yet, in other ways, the care of these patients was also incredibly lonely. I spent my days standing alone in the room of intubated and sedated patients, in layers of personal protective equipment, listening to the beeping of monitors and the hum of the negative pressure system, hoping that we had learned enough about this disease to help our patients survive. I often found my gloved hands holding theirs, knowing that they didn’t know I was there but hoping that my touch might make them, and me, feel less alone. 

I can remember every patient in our unit those first few weeks. The 40-year-old man whose old college friends sent us daily meals for three weeks; the 80-year-old man who had a wife dying of COVID-19 in another hospital; the man who survived discharge from the COVID-19 ICU only to die in a general medicine unit a few days later from a massive bleed; the sole woman being treated in the COVID-19 unit, who used to be a nurse. Some of them passed. Some of them stayed in our unit for weeks, went to our in-house rehabilitation unit, and were eventually discharged home. Some of them are still hospitalized today. And while the stories of all those patients stay with me, the patient whose name I came across in the article is especially meaningful. He was my first patient that died of COVID-19.

The day he died was also the day that my first patient with COVID-19 improved enough to be taken off a ventilator. Our whole team stood in a mass outside of the glass doors, watching as the respiratory therapist prepped to take the breathing tube out. It would be our first time seeing someone with such severe disease survive this infection. As soon as he was extubated, the resident on our team rushed into the room with an iPad to FaceTime the patient’s family. We could hear the cries and cheers of his family from outside. My resident, wanting the family to see the team that took care of their loved one, swung the iPad around and there we were 10 masked faces cheering from just outside the room. Six feet, a glass door, and an iPad apart, we all celebrated that moment together.

But within 10 minutes of this first success, I was standing in the room of my other patient, to be with him when he died. Up until a few days before his death, his story sounded exactly the same as the patient’s we had just extubated. He was a man in his fifties, with a few well-controlled medical problems, who came in with a dry cough and shortness of breath. Both men had been on the medical floor for a few days before they were intubated. Both spent the first few days on our unit deeply sedated, paralyzed, on high ventilatory settings. But for reasons unknown to me, or to the rest of the medical community, one of them was recovering, and the other was progressing to multi-organ failure.

I stood at his bedside in disbelief that we weren’t able to help him survive. He was young, too young. He still looked robust, as if he was about to wake up and tell us to take the tube out. Like all hospitalists, I’ve taken care of many dying patients, but this death felt different. I was not used to seeing a young healthy person die of pneumonia. I was left feeling like I failed him and struggled to give him any semblance of a “good death” in the sterile, lonely ICU room.

My patient’s partner saw him for the last time over FaceTime. Family and friends texted the patient’s phone so we could read their messages aloud before he passed. I was struck by the contrast of his current situation to his last texts where he told people he was feeling fine but the doctors told him he needed to be intubated. We read him messages of love, thanks, and sadness from his family and friends, knowing that it was a poor substitute for their presence but trying to do whatever we could to imitate what a good death would look like in any other situation. I stood in the room with the nurse in silence, not knowing how long it would take for him to pass but not wanting to leave him alone. The nurse suggested it might be nice to play him some music. My goggles fogged up while I tried to find his most played list on Spotify. The music that played was upbeat and electric, completely at odds with his current situation. It made me imagine the type of person he was before he got sick, before COVID-19 took his life. An hour after his death, a new COVID-19 patient on the edge of death rolled into his now disinfected room, forcing us to quickly shift our attention to try to help this new patient survive.

When I saw the deceased patient’s name on the NYT list, feelings of hopelessness and guilt resurfaced once again. There were no proven treatments for COVID-19, so most of the time it felt like everything we were doing was just buying patients time. Buying them time to let their bodies either recover or succumb. We saved a lot of lives by buying them time, but we lost a lot, too. I clicked on his name in the article, and it led me to his obituary. I learned about his life and his passions and got a glimpse into the man who listened to that upbeat playlist. I hoped that our farewell was the good death he deserved.

A few weeks later, I was sent a video of our first extubated patient going home. He was walking out of a car, down the sidewalk, and up the stairs, all with an oxygen canister in tow. He had a big grin on his face as he looked at all his neighbors out on the doorsteps cheering him on. He probably wouldn’t recognize me if we met. He left our ICU almost immediately after he was extubated to make room for the next patient, and he never saw me without my mask and goggles. But seeing him take those steps brought me to tears. I shared the video with my team as a reminder of the meaning behind our work.

It is my colleagues that I worry about now. Every doctor in my hospital has stories like mine: stories of soaring highs and extreme lows. Doctors speak of being unable to do right by patients due to resource limitations or institutional policies. They tell stories of distress over equity in patient care and stories of rage about the societal and governmental response to this crisis. And now, with the rates of COVID-19 rising in the rest of the country, many more doctors will be dealing with these scars and collective trauma. Studies all over the world are finding higher than usual rates of burnout and depressive symptoms amongst doctors caring for COVID-19 patients. In New York, where we are just past the first wave of COVID-19, we are starting to think about how we can heal the healers. 

We have learned that we need to move beyond the impromptu office debriefing with colleagues and create formalized space and time for hospitalists to share and reflect on experiences. Our hospitalist group has started the process by allowing doctors to choose the format in which they would like to debrief. Everyone had the opportunity to meet in dyads, small groups, or large groups, to swap stories, cry through losses, celebrate victories, and vent about the things we had no control over and things that we could have done better. It has let many of us explore emotions that we did not have time to deal with in the moment and may not have even recognized that we were having. It also helped us lean on the people in our lives who truly understood our experience: each other.

Part of this process also included sessions with the hospitalist section chief to reflect as a group on the response to the crisis. Hospitalists were encouraged to have honest and open discussions about what did not work well organizationally, as well as to brainstorm and exchange ideas on how the group could do things differently moving forward. Having a leader at the table who was committed to listening and enacting change was key in combating the helplessness and isolation felt by individual practitioners.

Hospitals must start prioritizing—and devoting time and resources to—the well-being of their providers during the pandemic. Given the degree of trauma experienced by providers, if we don’t address the post-COVID-19 care of physicians now, we will find the consequences of burnout rippling through the medical field. Our community has already seen its first physician suicide amidst this crisis. Beyond the negative impact of burnout on providers, we know that patients’ care will also suffer. As we prepare for a potential second surge of COVID-19 infections, it is imperative that we invest in helping our physicians recover, so they can be prepared to provide the best care possible when they are asked to lead the fight once again.

Complete Article HERE!

Social Isolation a Threat to Hospice Patients During COVID-19

By Holly Vossel

The threat of COVID-19 has forced many providers to keep high-risk seriously and terminally ill patients isolated to limit the virus’s exposure and spread. As families become disconnected from loved ones approaching the end of life, hospice providers have sought new ways to offer mental health support during the pandemic.

Social isolation during the coronavirus emergency has substantially impacted the hospice population, as well as seniors in general. Research has identified significant links between social isolation and increased risk of early mortality among older and seriously ill patients.

According to a recent report from health insurance marketplace company GoHealth, the pandemic has been driving a mental health decline among isolated aging populations as they practice social distancing from family and friends. In a nationwide study of 1,000 Medicare beneficiaries, 25% percent reported a decline in their mental wellness since the pandemic’s onset, and more than 90% felt lonelier now than before it began.

“Social isolation from friends, families and even their hospice providers visits, has impacted the mental health of hospice patients,” said Shelley Cartwright, executive director of Illinois-based Apex Hospice and Palliative Care. “Social isolation contributes to a decline in mental health. Depression, anxiety, and delirium in those who are terminally ill are frequent and currently most likely under-diagnosed as hospice frontline personnel are not being allowed to make in-person visits as frequently as they normally would as patients, families, hospitals and skilled nursing facilities are in COVID-19 precautions.”

Hospices have struggled to find a balance between technology and the human touch while offering telehealth visits and online virtual support. With families often connected only virtually in the last moments of life, disenfranchised grief has added to concerns of ramping up mental health support.

“Dying is inherently lonely and isolating and made worse when people are actually removed from their loved ones,” said Christopher Kerr, CEO and chief medical officer of Hospice & Palliative Care Buffalo in New York. “It’s ultimately a closing of a life, not just a medical phenomena, and that life is defined by relationships. The pandemic has taken a difficult situation and made it multiple times worse. It’s in moments of crisis and need that we need to connect ourselves to those people that give our life meaning. The opposite happened that when we most needed to be reconnected to those we love, we were removed.”

The sweeping effects of isolation has drawn heightened focus from hospice providers on the need for greater communication and deeper integration of psychiatric care. Research from 2018 projected that the number of seniors with mental health conditions will triple over the next three decades. An estimated 5 to 8 million aging Americans currently suffer from mental illness. Providers have been working on improving hospice access for these patients.

With facilities and hospitals limiting interactions, social isolation has exacerbated mental health concerns as hospices face barriers to reaching patients during the pandemic. One strategy being employed is increased collaboration with referring facilities, psychiatric disciplines and primary physicians as hospice work to support isolated patients and their families.

“We believe that no one should have to face serious illness or death alone,” Carla Davis, CEO of Heart of Hospice, told Hospice News. “Holistic, person-centered care delivered by hospice care teams plays a critical role in protecting and improving the mental health of vulnerable populations who would otherwise be left in isolation. The more we are able to work diligently alongside our facility partners to continue providing quality care, the better equipped we will be to prevent negative mental health outcomes in individuals facing serious mental illnesses.”

As COVID-19 cases and fatalities continue to climb, so does growing concern among hospice providers over the effects of isolation on the quality and experience of end-of-life care.

“Patients, even though imminent, often fight death until they are at peace and have said their good-byes or receive permission from their family to ‘let go,’” Cartwright told Hospice News. “Quality end-of-life experience and death for patients and their families is, and will be, jeopardized with the continued isolation of dying patients from their families.”

Complete Article HERE!

Study finds room for improvement when hospital patients transition to hospice care

by Steve Lundeberg

Terminally ill patients referred to hospice care from a hospital setting tend to be on hospice for shorter periods than those who enter hospice while living at home or in a residential care facility.

The findings by Oregon State University College of Pharmacy researchers are an important step toward improving the care experiences of dying patients and their loved ones.

Hospice care refers to treatments whose goal is to maximize comfort and as opposed to prolonging life. In general, more time on is better for patients than less time, research has shown.

“It’s well established that hospice care reduces symptom burden and improves quality of life for patients nearing the end of life and for their caregivers,” said the study’s lead author, Jon Furuno, an associate professor and the interim chair of the Department of Pharmacy Practice. “Patients receiving hospice care also have their discomfort controlled better and experience more satisfaction with their care compared to patients who die without receiving hospice care.”

But Furuno’s recent research, published in the journal Medical Care, points out some key variations in hospice transitions and experiences, opening the door to changes that could make important, positive differences for patients and families.

Patients can be referred to hospice care from any location, Furuno explains, but little is known about differences between referrals from different care settings; i.e. hospitals, nursing homes, assisted living facilities or the someone’s .

“Are the patients enrolling in hospice at an appropriate time or later than ideal? Are they making the transition to hospice care with the right prescriptions from their providers? How do things differ among referral locations? Those are all key questions to explore to help ensure optimal patient care,” Furuno said.

The study looked at data from nearly 80,000 adult hospice patients from 19 states over a five-year period. Their average age was 79, and one-third were receiving hospice care because of a terminal cancer diagnosis.

Just over half of the decedents had been referred to hospice from a , and about one in five had been living at home at the time of their referral. Nursing homes (17%) and assisted living facilities (9%) rounded out the sample.

The results showed that hospital-referred patients were much less likely to receive hospice care before the final seven days of their life than patients referred from elsewhere; 56% of those referred from a hospital spent less than a week on hospice, compared to 30% from nursing homes, 29% from their own home, and 19% from assisted living.

“Obviously every case is unique, but generally speaking, more time in hospice care is associated with better patient and family outcomes,” Furuno said. “In our study, the median length of time on hospice was nine days.”

Another key finding involved drug prescriptions, particularly the absence or presence of a constipation-alleviating drug along with the opioids often used during hospice care. Opioids relieve pain but can cause other discomfort in the form of infrequent bowel movements.

“Hospital-referred patients had the lowest frequency of co-prescribed opioids and a bowel regimen,” Furuno said, noting co-prescription of these medications is an important indicator in the Centers for Medicare and Medicaid Services’ Hospice Quality Reporting Program.

Among hospital-referred hospice patients, fewer than 60% received that co-prescription compared to 72% of patients referred from nursing homes, nearly 70% from assisted living facilities and 63% from home.

“The study’s results suggest an opportunity for interventions that will improve the transition to hospice care and benefit patients and families,” Furuno said. “Patients transitioning from the hospital to may be the most vulnerable group because of the magnitude of the transition from actively fighting a chronic illness for months or maybe years to palliative care.”

Also, health care providers in a hospital setting may not always be sufficiently trained in preparing patients and families to make that transition, he said, adding that further research should look for explanations behind the hospice transition differences uncovered by this study.

“The end goal is policies and practices that consider these differences and trigger specialized interventions when necessary so patients can get the best care possible,” Furuno said.

Complete Article HERE!