How Death Doula Alua Arthur Gets It Done

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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!

More than 40% of GPs have accompanied terminal fasting

Most respondents said accompanying someone during terminal fasting was compatible with their professional ethics

Four out of ten family doctors in Switzerland have dealt with at least one patient who refuses all solid or liquid food in order to die, according to a study. Most doctors have a positive approach to the issue.

The Zurich University of Applied Sciences (ZHAW), in collaboration with the Swiss Medical Association, conducted a representative survey of 750 practising family doctors in Switzerland on the voluntary stopping of eating and drinking (VSED), also called ante-mortem or terminal fasting.

VSED is the act of a person who consciously refuses to eat or drink with the intention of dying. Healthcare professionals are therefore not charged with providing a lethal drug to the patient but rather with caring for and accompanying the patient from the beginning of VSED until her or his death.

The survey found that 81.9% of family physicians knew about VSED and 42.8% had accompanied at least one patient during the process. On average, doctors with experience of VSED had dealt with 11 such cases.

“We didn’t expect such a high number,” says Sabrina Stängle, co-author of the research at ZHAW. She pointed out that Switzerland still lacks a unified practice in this area.

“Family physicians lack sufficient in-depth knowledge to address patients and their relatives in an appropriate manner during the process,” the researchers concluded. “Further training and development of practice recommendations are needed to achieve more standardised accompaniment of VSED”.

Stressful

In any case, 59% of the doctors questioned saw VSED as a natural death process when overseen by a healthcare professional; 32% defined it as equivalent to passive euthanasia, 5% regarded it as suicide, 2% considered it a self-determined end-of-life decision and 1% as an alternative form of dying. One per cent of physicians said they would classify VSED differently depending on the case, which would also be based on the patients’ motives and physical health.

Almost three-quarters of respondents (73%) said this assistance was compatible with their worldview or religion, 58% with their professional ethics; 24% said it contradicted their ethics and 18% were neutral. Those who have already been confronted with it are generally more favourable.

That said, more than half of the respondents said accompanying a person during VSED was stressful.

Complete Article HERE!

It should be easy for people to receive end-of-life care at home.

Why is it so hard?

By Charlotte Grinberg

“I want to go home with the time I have left. I want to be with my children.”

Susan was sitting in the sunroom of the medical oncology floor. A hospital blanket, the ones that are never warm enough, was draped over her shoulders and the shoulders of her older sister. You could immediately tell they were sisters, but also best friends. They looked healthy and strong, both in the sixth decade of life. But Susan had a tumor in her brain and would likely soon die from it.

This was a family meeting. Susan’s two daughters were also in the sunroom. Victoria, the older daughter, sat to the side, while Rachel sat next to her mother, holding her hand. They probably never imagined being in this situation in their 20s. I wondered if they were as close as sisters as their mother and aunt are.

I was there as a resident physician in a palliative care rotation. I quietly observed the other doctors, the case manager, and the nurse. Compared to other patients I had met on this rotation with cancer diagnoses, Susan was clear and comfortable with her decision to transition to comfort-focused care in her home. The point of this family meeting, however, was to explain to Susan and her family that this was not realistically possible.

“What do you mean I can’t go home?” she asked. “I want to be with my children.”

Susan’s tumor had damaged her ability to form short-term memories. She could walk, talk, and think, she just couldn’t remember things. She forgot to turn off the stove, and was often found wandering her neighborhood. She needed constant supervision to be safe.

Her daughters were caring for her, but also working full-time jobs. Rachel began to cry as she described weeks of waking up several times every night when mom came into her room asking questions. Victoria didn’t say a word. Maybe she felt guilty for living with her boyfriend instead of being with her mom and younger sister. Rachel cried even more when she described feeling detached from the world, scared, and overwhelmed by caring for her mother. It was that sense of being overwhelmed that led her to dial 911 because her mother still kept wandering outside. That’s how Susan ended up in the hospital.

With the rise of an aging population and the number of people with serious illnesses, the field of palliative and hospice care is growing. One of the many roles of palliative and hospice care providers is to learn the communication skills necessary to help patients navigate their wishes for end-of-life care. Also growing is the preference of patients, caregivers, and clinicians for patients to live their final days in the warmth of a home, away from the incessant interventions of hospitals.

At least for now, though, our medical system does not financially support caring for dying people at home the same way it supports caring for them in a hospital, rehabilitation facility, or long-term care facility. Patients who choose to leave the hospital for home hospice receive only limited services from their medical insurance through the hospice benefit. Families must provide or privately pay for all personal care services: bathing, dressing, eating, toileting, administering medications, and moving around, all of which are physically and emotionally exhausting for a caregiver and occur throughout the day.

When patients and families realize they must provide this care, some elect for ongoing hospital interventions or discharge to a rehabilitation center or long-term care facility. These options are paid for and so seem like the next logical step, even though their preference, and the patient’s, is to be at home.

It took a week to figure out a safe discharge plan for Susan. Her family members needed to visit the long term-care facilities covered by her insurance. Then they had to choose one, and the insurance company had to authorize her stay there. Given a mean hospitalization cost of $2,543 per day, this one-week delay may have cost the insurance company on the order of $18,000.

What Susan’s family really needed was assistance at home for 10 hours a day while they worked. Round-the-clock care costs an average of $480 per day, meaning that seven days in the hospital could have covered a home health aide’s salary for a month.

Unlike Susan, many patients aren’t discharged after one week. They stay in the hospital for weeks, even months, until they die because there is no safe discharge plan in place.

I’ve seen this situation again and again, and I’ve only been doing this for a few years: the patient is too weak or medically unstable to go to a rehab facility and no one is available to safely care for them at home. And now, in the era of coronavirus, which has called into question the nursing home industry, it is even more important to look into alternative insurance funding models for hospice at home as a potential win-win for insurers and patients.

Susan’s daughters and sister took leaves from their jobs to make possible Susan’s wish of being home with her family. It was too painful for them not to honor her end-of-life preferences. Yet they became overwhelmed, exhausted, and financially stressed, and eventually returned Susan to the hospital for placement into long-term care, which resulted in a second prolonged hospitalization.

If our health system provided what they needed — supportive, tailored home care — they could have focused on what mattered most: spending quality time with Susan during her last days.

Complete Article HERE!

Hospices Seek to Balance Technology with the Human Touch

Hospices nationwide have leveraged technological advances to improve workflows, referral communications and enhance patient care. While telehealth in particular has been vital for hospices to continue reaching vulnerable high-risk patient populations during the COVID-19 pandemic, providers must proceed with caution when it comes to technology and patient care. 

Prior to the pandemic, technology in the hospice industry was evolving, with systems such as predictive analytics, telemedicine, artificial intelligence and virtual reality gradually changing the end-of-life care landscape.

“We have obviously seen an increase in the use of telehealth, and the word of caution there is we want to make sure we learn from this pandemic and accelerate some of that move,” said Edo Banach, president and CEO of National Hospice and Palliative Care Organization (NHPCO) in a recent Netsmart webinar. “We have to make sure that we use technology appropriately, but not to replace the human touch that is the sweet spot of hospice and palliative care organizations.”

NHPCO has been among the advocates in the hospice and palliative spaces calling for regulatory reform as telehealth pushes forward during the coronavirus pandemic. In August the U.S. Centers for Medicare & Medicaid Services (CMS) announced that it would make permanent a number of the temporary flexibilities to expand telehealth that the agency implemented in response to the pandemic, though of rules extended that will affect hospices remains uncertain. Concerns have flooded both the hospice and palliative care fields as providers strain to navigate uncertain technological reimbursement opportunities ahead.

“Importantly, we have to make sure that hospices and palliative care programs are compensated for the technology,” Banach said. “They are nowhere near as compensated as hospitals and other institutions when it comes to technology. That’s something that needs to improve. It’s really going to be important for individuals to have access to the technology that they need to get care in the home and for the clinicians to similarly have that same access and support. This is going to include technology for the delivery of meals and for the delivery of pharmaceuticals, technology that enables vital signs to be taken, technology that allows individuals to stay connected. The investment there is really massive. Billions of dollars of investment have gone into interoperability and state changes.”

Investing deeper in technology comes with considerations of data analysis and relationship-building capabilities as hospices look ahead to a value-based payment environment. Enhancing data analysis will be key for hospices looking to demonstrate their value proposition to Medicare Advantage plans in anticipation of the hospice carve-in coming in 2021. Designed to improve continuity of care and increase coordination among providers, the ability to reach patients sooner through interdisciplinary partnerships is another potential benefit from expanded technology use.

“The most important thing is diversification. If there is an opportunity to provide person-centered interdisciplinary care under contract with different kinds of entities, that’s going to be really important for hospices to establish those relationships to acquire the technology that’s necessary to take risk and really to begin, or to continue to live, in this sort of new value-based world because at some point, it’s going to be all that’s left — for better or worse. It’s really important that if you’re not in that space, to get in that space and to diversify as much as possible. Those who do that will be quite successful,” Banach said.

Complete Article HERE!

How COVID-19 Is Changing End-of-Life Care

Some hospice agencies have been reluctant to go into homes lately

Entrepreneur Mika Newton with his wife Nuray, his daughter Ava and his mom, Raija

By Sherri Snelling

It was a decision Mika Newton had been dreading, but he knew he needed to stop seeing his mom.

For nearly three years, Newton, an entrepreneur in cancer care advocacy and patient support with his startup xCures, had been taking care of his 79-year-old mother, Raija, who lives near him in Oakland, Calif. When his father passed away, Newton took over caregiving duties for Raija, who suffers from mid-stage dementia and was recently diagnosed with terminal lymphoma. As the coronavirus pandemic exploded in March, Newton’s wife, Nuray, a nurse at Concord Medical Center at John Muir Health, was treating the sudden influx of COVID-19 patients. That meant a halt in Newton’s daily visits to his mom to protect her from any virus transmission.

“I wasn’t able to see her for eight weeks which was hard. But we spoke on the phone every day and I had peace of mind she wouldn’t die alone, because we have full-time home care and hospice for her,” said Newton.

Hospice in the Time of Coronavirus

According to a 2019 National Hospice and Palliative Care Organization report, nearly 1.5 million Medicare beneficiaries currently receive hospice care, defined as compassionate care that replaces treatment for patients who have a terminal condition with less than six months of life expectancy.

However, a National Association for Home Care & Hospice (NAHC) survey conducted in May 2020 found that 95% of hospice agencies have had existing patients refuse visits due to fears of contracting the virus  And while two-thirds of hospice agencies are taking COVID-positive patients, they have lost overall clientele, forcing them to reduce direct-care staff. Some staff concerned about their own health and their families’ health are reluctant or even refusing to help any COVID-confirmed patients.

“The agency said they couldn’t risk staff getting the virus and having to be quarantined and out of commission. That was a blow.”

Rebecca Bryan, a journalist for Agence France-Presse based in Los Angeles, realized that hospice care can be a blessing when her father spent eight months in hospice in 2004. But things were different when her 89-year-old mother, Margie, needed hospice before passing away during the pandemic.

“Hospice is a wonderful program, but I never realized how hands on my mom must have been for my dad since I was only home the last month of his life,” said Bryan.

When her mother was recently diagnosed with late stage leukemia and given three to six months to live, Bryan spent two months in Dallas caring for her.

“Mom made a decision not to proceed with blood transfusions, so we secured hospice care for her at home,” Bryan said. But while the small agency in Dallas helped deliver a hospital bed and did an initial inspection, it refused to send any staff to Bryan’s mom’s home when she showed an elevated temperature.

“She had just tested negative for COVID in the hospital and because of her cancer, she had not been outside. She was only at home alone but the agency said they couldn’t risk staff getting the virus and having to be quarantined and out of commission. That was a blow,.” said Bryan.

Bryan said she and her sister learned how to turn her mom to avoid bed sores, put on adult diapers, administer morphine and other paraprofessional caregiving tasks without any instruction.

“That was hard, I wish we had more guidance, because you are constantly asking yourself, ‘Am I doing this right?’” said Bryan.

Hospice Telehealth

Robin Fiorelli, senior director of bereavement and volunteer services for VITAS Healthcare, a provider of end-of-life care, believes in-person hospice care can never really be replaced but that telehealth has become a solution to some hospice challenges during COVID-19.

“We can conduct a virtual tour of a home hospice patient’s living area so our nurses can assess whether a hospital bed, walker, patient lift or bedside commode should be delivered to the home,” said Fiorelli.

“COVID has magnified the strain on family caregivers, there is no relief.”

She also added that face-to-face conversations about goals of care are being replaced by video chats in which physicians, patients and family members explore care-related wishes and document difficult-but-necessary decisions about ventilation, do-not-resuscitate orders and comfort-focused care. This proves especially valuable for family members who live far away from the patient and who can be part of those conversations remotely.

The Centers for Medicare and Medicaid Services (CMS) has waived certain requirements for hospice care at home due to the pandemic, such as allowing health care professionals to recertify patients for another six months of hospice care via a telehospice visit, foregoing the mandatory two-week supervisory visit for home health aides and waiving the mandatory hospice volunteer hours, which normally have to meet 5% of total hospice hours delivered.

“COVID has magnified the strain on family caregivers. There is no relief,” said Vic Mazmanian, a dementia care expert who operates Mind Heart Soul Ministry to train faith-based organizations, provide support group services for senior centers and memory care communities and work with hospice chaplains.

“Not being able to take a loved one to adult day care or a senior center so you can get a break is accelerating the stress and impacting the health of caregivers,” said Mazmanian. “The 24/7 nature of hospice care, with most, if not all, the work being done by the family member without help from professionals or volunteers, is being derailed by the pandemic with many caregivers feeling increased anxiety, depression and loneliness.”

From Grief to Gratitude

Mika Newton feels he’s been lucky. In addition to the daily home care for his mom, hospice workers come three times a week. But now that he has resumed his visits, he realizes the stress of not seeing her regularly like before has taken its toll on both of them.

“She’ll ask me why I’m wearing a mask and get angry about it because she doesn’t remember what is happening in the outside world,” said Newton. “Or she’ll forget she has cancer and I have to remind her. I realized the cancer may be killing her, but the dementia is slowly taking her soul.”  

Rebecca Bryan advises family caregivers facing hospice for a loved one to ask a lot of questions such as, “If my loved one tests positive for COVID or has one of the virus symptoms, does that affect your ability to come care for them?”

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“In the beginning of the pandemic, many of our patients and their families did not want our professional staff coming into the home. But that has eased up more recently,” said Dr. Kai Romero, chief medical officer for Hospice By the Bay, affiliated with UCSF Health in San Francisco. “We’re proud that throughout this entire experience we have continued to provide needed end-of-life care to everyone on our service and we’ve kept our direct care workers safe with strict testing, PPE and other guidelines. Not one of our staff has tested positive for COVID-19, even though we have had twenty-seven patients who have had the virus.”

COVID-19 Sparks ‘The Talk’ For Families

When Next Avenue asked readers on our Facebook page how the pandemic has affected care for their loved ones, one shared that she recently lost her mom after home hospice care and worked hard to make sure COVID-19 wouldn’t be part of the end of her life.

“Eighty percent of people don’t make a will or have the family conversation about long-term care because they are afraid if they do, they will die,” said Scott Smith, author of “When Someone Dies — The Practical Guide to the Logistics of Death.” Smith, who is CEO of Viant Capital and sits on a hospice board, advises families to have “The Thanksgiving Talk” where older family members share not just their wishes but where all the important legal and financial documentation can be found. 

Mika Newton said losing his dad galvanized him and his brother, Timo, to get all his mom’s end-of-life plans settled now, while she’s still alive. “My mom was able to participate in the conversation. which I’m really grateful for. And my dad did a great job making sure she would be OK financially, so it wasn’t a huge burden. I’m glad we went the route with hospice, I feel at peace with it.”

Complete Article HERE!

How death doulas are helping people process grief during the pandemic

By Tracey Anne Duncan

Like so many people, I have spent much of this pandemic grappling with grief. I’ve lost people I love, and even now, people I care about are ill. Even if you haven’t personally lost someone, you’re likely tapped into the collective sense of mourning. It’s hard to know how to comfort people who are dying or the people who love them under any circumstances, but when you can’t be together, it makes it even harder.

That’s where death doulas step in. In case you aren’t familiar with the term, a death doula is like an end of life midwife. They help dying people by guiding them and their families through the dying process. They help people plan out their death experiences. They can aid in navigating the practical parts — like wills and funeral planning, and also the emotional aspects — like helping people figure out what kind of rituals will make grieving cathartic.

Many of the usual ways that dying people and those who love them deal with death — deathbed visits, meetings with spiritual advisors, grief counseling — are not available to us right now. We may not get to have much, if any, contact with a person dying of coronavirus. In this pandemic of mass uncertainty, death doulas can help us through the grieving process.

“Doulas are professionals who provide support and guidance to individuals and their families during transformative life changes,” Ashley Johnson, an Atlanta-based death doula and founder of Loyal Hands, a service that matches people with end-of-life doulas, tells me. These doulas can train family members in some of the practical aspects of caregiving, help people create support plans, and counsel those who are dying and the people who love them, Johnson tells me.

Death doulas are also educators, in a way. Most of us spend a lot of time trying not to think about death, and we aren’t well-versed with the death process. Most of us aren’t even aware that death is a process that can be charted. Death doulas help folks get familiar with the normal and natural stages of dying, Johnson tells me. In the terrifying and confounding moments when grieving people are wondering what happens next and how they can deal with it with dignity, death doulas can step in to fill in the blanks.

There’s kind of a new-age, woo-woo stigma surrounding the work that death doulas do. They aren’t priests and they aren’t psychiatrists, so their professional world is kind of murky spiritual-ish/life coach-ish territory. But some psychologists do think that death doulas can play an important role in helping people cope with grief. “A doula could help people figure out how they want to mourn,” says Aimee Daramus, a Chicago-based psychotherapist.

Daramus adds that people should be mindful that many doulas aren’t trained therapists, but because they are familiar with managing grief so they are generally able to tell when a clinical professional is necessary. For people who are spiritually inclined, but not formally religious, this middle ground can be a comfortable place to mourn without devolving into either over-medicalized melancholy or eccentric science-shunning spiritualism.

“A doula should be able to recognize when someone’s thinking or behavior is starting to go beyond the normal range of mourning experiences.” In this way, death doulas can be a touchstone for figuring out if a person is having a healthy grief response or if they may benefit from another type of help. There is no one right way to grieve, of course, but some people can sink into depression if they don’t process their grief as it’s playing out.

One of the benefits of working with a death doula is that you can shop around to hire someone who fits your needs and understands the cultural specifics of your background. “A professional should work to understand the unique cultural practices relevant to that individual or family,” says Thomas Lindquist, a Pittsburgh-based psychologist and professor at Chatham University. This is especially important, he says, during important life milestones.

A lot of folks in the hospice and funeral industries will likely have a passing knowledge of many kinds of death practices, but you can find a death doula who shares your beliefs, or who literally speaks your own language. Grieving, while it is a universal experience, isn’t generic, and Linquist says that it’s important for a family or person’s religious beliefs to be incorporated into their care plan.

But how can a doula help someone die with dignity if they can’t even be in the same room with them? “As doulas, we have had to get really creative about the ways we meet with people,” says Christy Moe Marek, a death doula in Minneapolis/St. Paul, and an instructor at International End of Life Doula Association (INELDA). Marek says that she has met with the families of dying people on their decks and porches, but that she has had to meet with most dying people via Zoom. It’s not ideal, she says, but adds, “it is opening up such possibilities given the constraints of the pandemic.”

Death doulas are finding new ways to support people. “So much of the way this works right now is in helping both the dying and their loved ones to manage expectations, reframing what they hope for, and to shift focus onto how the ways we are connected whether we are able to be together in person or not,” Marek says.

Marek says that helping people accept the reality of difficult experiences is really the whole point of her work. “During the pandemic, what is actually happening is different than we could possibly imagine and we may not like it. We may actually hate it with our whole being, but it won’t change what is. So we work with that,” Marek says, “And that is what ends up being the mark of a good death.”

Complete Article HERE!