Hospice industry growth marked by fraud, deficient care

By Kim Christensen, Ben Poston

Martin Huff was 67 when he fell off his bicycle, banged up his knee and spent a couple of hours in a Riverside County emergency room before walking out under his own power.

Ten days later he was in hospice care, diagnosed as terminally ill by a small Covina provider of end-of-life services that said he was weak and wasting away, with six months or less to live.

Five years after that grim prognosis, however, Huff was still very much alive. He testified in federal court that no one from California Hospice Care had ever given him a medical exam before claiming he was dying.

“I really never knew exactly what the deal was on the hospice,” he said.

Huff is among a legion of mostly older Americans targeted for audacious, widespread fraud in an industry meant to provide comforting care in their final days, a Los Angeles Times investigation found.

Like Huff, many are unwitting recruits by unscrupulous providers who bill Medicare for hospice services and equipment for “terminally ill” patients who aren’t dying.

Intense competition for new patients — who generate $154 to $1,432 a day each in Medicare payments — has spawned a cottage industry of illegal practices, including kickbacks to crooked doctors and recruiters who zero in on prospective patients at retirement homes and other venues, The Times found.

The exponential boom in providers has transformed end-of-life care that was once the realm of charities and religious groups into a multibillion-dollar business dominated by profit-driven operators.

Nowhere has that growth been more explosive, and its harmful side effects more evident, than in Los Angeles County.

The county’s hospices have multiplied sixfold in the last decade and now account for more than half of the state’s roughly 1,200 Medicare-certified providers, according to a Times analysis of federal healthcare data.

Scores of providers have sprung up along a corridor stretching west from the San Gabriel Valley, where California Hospice Care was located, through the San Fernando Valley, which now has the highest concentration of hospices in the nation.

“There are too many providers in L.A. County, and too many providers who are in it for the wrong reasons,” said Edo Banach, who heads the National Hospice and Palliative Care Organization, the largest U.S. trade group for hospices. “Folks who go into this for the wrong reason generally do not do a good job.”

Much more than money is at stake.

Some patients who unknowingly enrolled in hospice later discovered they had signed away their rights to life-saving emergency medical treatment, state inspection records show. Others endured excruciating pain in their final days when providers failed to deliver the comforting care they desperately needed.

Still others suffered the consequences of neglected, festering sores that developed maggots or resulted in hospitalizations.

Privacy laws and government reports that keep the names of patients, doctors and hospice administrators confidential make it difficult to quantify and humanize many of the cases.

But The Times found that since 2008, regulators have cited hospices in California more often than anywhere else in the country for the most serious types of violations, four times as many as states such as Texas and Georgia, which also have large numbers of providers.

Despite those citations, California and federal regulators have rarely fined, suspended or shut down deficient hospices, state reports show. Oversight has been weakened further during the coronavirus pandemic, as regulators suspended requirements for most hospice inspections and limited the types of complaints they investigate.

California, which has among the lowest barriers to setting up a new hospice, also leads the nation in violations for enrolling patients without medical proof they were terminally ill.

The Times’ analysis revealed that Los Angeles County hospices discharged patients 80% more often than providers nationwide, highlighting a rate that federal authorities say is a red flag for Medicare fraud.

California Hospice Care claimed that Jesse Staten suffered from terminal heart failure when it signed him up for end-of-life treatment. His predicted six months to live expired in 2012, but he didn’t: When The Times contacted him eight years later, he was still going strong.

“I’m hanging in,” said Staten, 75. “I’ve got a lot of issues in my blood and I have other issues, but I can’t complain.”

Federal prosecutors accused California Hospice Care of bilking taxpayers of $7.5 million in illegal payments in connection with Staten, Huff and scores of other ineligible Medicare recipients. The hospice owner and two doctors were sentenced to prison, and several others were convicted or pleaded guilty in the scheme.

Many of the hospice’s patients were addicts lured by the promise of free narcotic painkillers, prosecutors said.

Some were enlisted by a doctor who collected a bounty from the hospice on each, according to his indictment.

One was a 47-year-old woman who lost her place on a waiting list for a liver transplant when she signed up for hospice, which prohibits curative care. It took her months to get reinstated, and she died not long after finally receiving a new organ.

“That’s the last hope, and having that person removed from the liver donor list by placing them in the program is conduct that is hard to understand,” U.S. District Judge James Otero said when sentencing a hospice nurse to 18 months in prison. “That’s callous.”

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Conceived as an end-of-life option for terminally ill patients, hospice care properly delivered has been a godsend for millions of dying Americans and their families. It provides palliative care and prescription drugs, nursing services, medical equipment, supplies and spiritual counseling for those diagnosed with six months or less to live.

The U.S. hospice industry took root in the mid-1970s but flourished only after Medicare began covering its services in 1983. For-profit providers sprung up to meet a growing need that outstripped the capabilities of charities and religious institutions that pioneered end-of-life care.

In the last 20 years, the number of U.S. providers has roughly doubled, while Medicare spending on hospice has grown sixfold, to $19.2 billion a year. More than 1.5 million Medicare beneficiaries now receive care from some 5,000 hospices, nearly a quarter of them in California.

“Virtually all of the growth is of for-profit providers, which appear to be crowding out the local nonprofits that established the hospice model and had a desire to maintain its integrity,” said Michael Connors, a long-term care advocate with California Advocates for Nursing Home Reform.

For-profit operators now make up 70% of all hospices certified by the Centers for Medicare and Medicaid Services and 91% of those in California. In Los Angeles County, they account for 97%.

Many provide excellent care.

Satisfaction surveys reported by hospices nationwide show that more than 80% of respondents rate their hospice as a 9 or 10 out of 10, but in L.A. County that figure drops to 74%. Respondents in L.A. also were less likely to report that hospices always gave them the help they needed.

Most hospice care is provided in patients’ homes, but services also are rendered at stand-alone facilities, nursing homes and assisted-living centers. Regulatory inspections and financial audits are infrequent, making the system a soft target for scammers.

Complaints about shady operators began lighting up the California Senior Medicare Patrol hotline in mid-2017 and have not let up, said Sandy Morales, who oversees the federally funded statewide hotline whose mission is to help Medicare beneficiaries prevent, detect and report fraud.

“It’s all over Southern California: Riverside County, Hemet, Indio, Long Beach, Los Angeles, Bakersfield,” she said. “Right now, it’s huge.”

Since January 2019, her agency has forwarded more than 100 cases of suspected hospice fraud to federal investigators, Morales said. One doctor’s office in Los Angeles County recently reported that 10 patients appeared to have been fraudulently enrolled by a hospice.

Fraudsters stick to a familiar script, enticing or duping Medicare recipients into signing up for services they don’t need, she said. They send recruiters door-to-door and to churches, food banks, senior centers and apartment complexes, often misrepresenting hospice as an “extra” Medicare benefit that pays for nursing visits, hospital beds or other needs.

‘It makes no sense. I can’t imagine there are 60 hospices in Burbank that are doing it the right way. There can’t be enough people for 60 hospices there.’
Jan Jones, chief executive officer of the California Hospice Network

The pandemic has spun off new schemes, she said, with unscrupulous recruiters now enticing prospects with hand sanitizer, gloves and promises of other COVID-19 “freebies.”

Many who sign up don’t even realize they are in hospice care.

“They’ll say, ‘No, I’m not dying. I wanted help with housekeeping and cooking and that’s what I signed up for,’” Morales said.

In May 2017, the daughter of an Alzheimer’s patient told a state investigator that a marketer for All Seasons Hospice in Paramount signed up her mother with a promise of 24-hour nursing care. When no one showed up, she called the hospice and was told the only 24-hour service was by phone.

The hospice administrator acknowledged the bogus sales pitch but mostly shrugged it off.

“It is a dog-eat-dog situation out there, very competitive,” the administrator told inspectors, according to a state report that did not name the employee. “I have no control over what these marketers say or do. They do what they want and promise anything to get the patient.”

The Centers for Medicare and Medicaid did not respond to specific questions about the extent of hospice fraud, but said in a statement that the agency aggressively seeks to ferret it out.

“CMS identifies fraud, waste and abuse in hospice services utilizing cutting-edge data analytics, medical review and program integrity investigations,” it said. “In instances of potential fraud, CMS refers those providers to law enforcement for further criminal investigation and for appropriate administrative actions.”

The U.S. Department of Health and Human Services’ Office of Inspector General reported in July 2018 that inappropriate billing and fraud by hospice providers cost taxpayers “hundreds of millions of dollars,” but the full extent is unknown.

The watchdog agency declined to comment on the scope of hospice fraud and said it could not provide a count of cases it has investigated. The Department of Justice did not respond to repeated requests for its prosecution numbers.

But according to interviews with hospice providers and industry experts, and a review of law enforcement releases on individual cases, state licensing reports, lawsuits and federal data, fraud is widespread.

“Hospice fraud remains absolutely rampant in the United States,” said Mark Schlein, an attorney with the Los Angeles firm Baum Hedlund who specializes in hospice whistleblower lawsuits. He links the fraud in large part to the industry’s unfettered growth.

“That translates into much more money being paid to hospice companies by federal healthcare programs,” he said. “When Willie Sutton was asked, ‘Why do you rob banks?’ he said, ‘Because that’s where the money is.’”

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More than two dozen hospices pepper a mile-long stretch of Victory Boulevard, an east-west artery in the San Fernando Valley. One well-worn office building in the 13600 block in Van Nuys is home to 15 providers.

“Hospices have been growing like mushrooms around here,” said one of the other tenants, who declined to give his name for fear of alienating his neighbors in the complex, where monthly rents start at an enticingly low $399.

Scores of others are in neighboring Valley communities, all part of a sprawling regional hotbed of for-profit hospices. Many are small operations, some purchased as investments by people with little or no healthcare experience.

Since 2010, the number of providers in Los Angeles County has skyrocketed from 100 to 618, federal data show.

North Hollywood is home to 35 hospices, while Glendale has 60, Burbank has 61 and Van Nuys 63.

By comparison, New York State and Florida each have fewer than 50.

With a population of 103,000, Burbank has a per capita rate of hospices that is nearly 40 times the national average, according to The Times’ analysis.

“It makes no sense,” said Jan Jones, recently retired chief executive officer of the California Hospice Network, a coalition of nonprofit providers. “I can’t imagine there are 60 hospices in Burbank that are doing it the right way. There can’t be enough people for 60 hospices there.”

New York, Florida and dozens of other states require prospective hospice owners to obtain a “certificate of need” to justify the demand for additional providers before they can get licensed.

California providers must be free of felony convictions, but there are few other qualifications for starting or operating a hospice beyond getting licensed by the state and certified by Medicare, a process that costs only a few thousand dollars.

“There is not a high-cost entry point to start a hospice program, unlike a hospital or a nursing home,” Jones said. “I think a lot of people think it is an easy business, which frankly I think is wrong. It is very complicated and complex, and very important to the people we serve.”

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With the explosive growth have come serious quality-of-care issues.

The Times’ review of more than 800 state licensing and inspection reports revealed instance after instance in which patients were deprived of comforting care because of the actions — or inaction — of hospice providers.

Mismanaged pain medications, neglected infections, missed nursing visits, incompetent or dishonest home health aides — all were cited among hundreds of violations that required hospices to draw up plans to correct the problems but resulted in little or no disciplinary action.

Patients suffered for lack of pain medication or had maggots crawling out of festering foot sores and head wounds, state inspection records show. Others died alone because no one from the hospice showed up when needed.

“We will never heal from that devastation,” Joyce Craig said of the final moments of her brother, Peter Craig, 74, a partner in a Los Angeles accounting firm who died of cancer in 2017.

The California Department of Public Health licenses and regulates hospices to ensure they meet state and federal standards but has limited ability to punish offenders. The only fines it can impose are for breaches of patient confidentiality.

To qualify for hospice, patients must be certified as terminally ill by their attending physicians, if they have them, and by a hospice doctor. The certification process is ripe for fraud.

The Times’ analysis of federal data showed that California hospices led the nation in violations for enrolling non-terminal patients, logging 57 such deficiencies since 2008, nearly three-fourths of them in L.A. County.

The next closest states were Georgia and Louisiana with 22 each. But the actual numbers in California and elsewhere are probably much higher, because of variations in how improper terminal diagnoses are coded and categorized by state inspectors.

At Eleos Hospice in Van Nuys, state officials who sampled five patients’ records in December 2016 discovered there was no evidence that any were terminally ill. The agency was “claiming or attempting to claim reimbursement for patients who did not need hospice care and services,” a licensing report noted.

All five were promptly discharged, but records show no action was taken against the doctor or hospice. The hospice has changed hands twice since then, according to a new owner who took over in August and said he was unaware of those deficiencies.

Inspectors found a similar scenario when they examined the records of two patients of Orion Hospice Care Services in Valley Village in November 2018.

The hospice’s medical director, in recertifying a patient as terminally ill, wrote that she was experiencing a steady decline in health and appetite and was losing weight. But that’s not what the patient told a state investigator.

“I did not have pain and my appetite is OK,” she said, “and I did not lose any weight.”

In fact, records kept at the board-and-care home where the woman lived showed she had gained seven pounds over the preceding three months.

The hospice administrator declined to comment when asked by inspectors to explain, and the medical director admitted he’d never put the woman on a scale, describing a method akin to a guess-your-weight booth at a county fair.

“I assessed her weight by my own clinical measurement and judgment, not by any actual documented measurement,” the doctor said, according to a state inspection report.

State inspectors found no records to support either terminal diagnosis, nor do inspection reports reflect any disciplinary action against the doctor or hospice beyond requiring a corrective action plan.

For a patient at Guiding Light Hospice in Sun Valley, the assessment could not have been bleaker.

The woman was easily fatigued, needed help with feeding, dressing, bathing, toileting, walking, handling money and medications and could speak “less than six intelligible words per day,” a state inspection record noted. She also was incontinent, had a history of falls and was forgetful, disoriented and confused, “with imminence of death.”

When interviewed by state inspectors, however, the woman, identified in a state licensing report only as Patient 1, said her only infirmity was some back pain from arthritis.

“Patient 1 stated she knew she was not ready to die, and laughed while denying she had a terminal diagnosis, and a life expectancy of six months or less,” according to the report.

The nurse who made the dire, detailed assessments insisted they were accurate, despite all evidence to the contrary. No disciplinary action was taken, but when inspectors returned for a follow-up 16 months later, Guiding Light had closed its office.

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Karen Alvarez at first gave little thought to the visitors from Ace of Hearts Hospice who showed up at Lancaster’s Sierra Retirement Village with armloads of fast food. After all, the apartment manager said, many of her low-income tenants were grateful for a complimentary meal.

But Alvarez was soon struck by the aggressive tactics of the Ace of Hearts personnel, who took over the lobby every Wednesday and trailed residents back to their units to pitch them on “free” hospice care, hospital beds and motorized scooters, all billable to taxpayers.

“You know, hospice people are gentle and talk to you nice. They are understanding and kind,” she said. “They don’t come in swarming like bees, like these people did.”

Few hospices better epitomize the most serious problems that afflict the industry — or underscore the failure of regulators to address them — than Ace of Hearts.

More than a dozen patients were not terminally ill and should never have been enrolled, according to a felony criminal complaint and state reports that detail a litany of deficiencies.

Based in a small office on Foothill Boulevard in Tujunga, the hospice racked up at least 115 regulatory violations from 2014 to 2016, second most among the 1,200 California providers over the last decade, federal records show.

Details of the violations fill nearly 200 pages of state inspection reports chronicling mishandled medications, neglected sores and repeated missed visits by nurses and home health aides.

In one patient’s case, aides failed to show up for 18 straight visits over a span of several months.

“It must have been a computer glitch,” was how the Ace of Hearts administrator explained it to state inspectors, who found dozens of other missed patient visits.

Ace of Hearts owner Rozanna Avetyan, 42, who signed the inspection reports as the administrator, did not respond to requests for interviews left with a person at her Stevenson Ranch home and with a woman who answered her cellphone but would not identify herself.

Her attorney, Donald Marks, did not respond to repeated phone and email messages.

In 2016, the government paid the hospice about $450,000 for 29 patients, nearly two-thirds of whom were discharged alive, Medicare data show. Although hospice patients may be recertified to receive care for more than six months, federal officials say that very long stays and high “live discharge” rates are potential indicators of fraud.

Ace of Hearts’ 62% live discharge rate in 2016 was nearly six times the national rate that year, according to The Times’ analysis of Medicare data.

That October, state inspectors could find no evidence of terminal illness for three of 11 patients sampled. Some had been admitted by the hospice medical director, who signed certifications electronically, state inspection records show.

The unidentified doctor, whose office was in Palm Springs, more than 100 miles from Tujunga, told state officials he did not recall some of the patients and didn’t know how his signature wound up on their certifications.

“I do not like computers so I do not use them,” he said, according to a state licensing report. “I did not sign anything electronically.”

The improper certifications had serious ramifications: Some non-terminal patients who signed up were stunned to learn they had forfeited their existing medical coverage in the process, the report states.

At least two lost their HMO coverage when they were enrolled in hospice without being told they could refuse. One was signed up while in an assisted-living facility, the state licensing records show, and the other while residing in a board-and-care home.

“The HMO won’t even see him in the emergency room, and he does not understand it,” the board-and-care owner told state investigators, according to a state report.

When pressed for an explanation, the report said, the Ace of Hearts administrator blamed the board-and-care owner for referring the man, who developed serious bed sores while in hospice care.

“I had nothing but trouble with the board-and-care owner,” the administrator said. “Now the patient has multiple wounds. I told [his] caregiver that we don’t do wounds here.”

Poor wound care was nowhere more evident than in the case of one patient treated by an Ace of Hearts nurse who lacked enough clean gauze to dress a serious foot sore.

“She picked up the dirty discarded Kerlix dressing that was removed from the wounds that was soiled with a few spots of old red colored discharge and she re-used the old dressing on top of the clean dressing,” wrote a state inspector who witnessed the violation of infection-control protocols.

It was but one of a long list of serious deficiencies over the years.

“The cumulative effect of these systemic practices resulted in the failure of the hospice agency to ensure the provision of quality healthcare in a safe environment,” a 2016 inspection report said.

Despite that finding, however, Ace of Hearts continued to operate for three years. It eventually was undone not by state regulators but by its own weekly free breakfast sales pitch visits to Sierra Retirement Village and the nearby Aurora Village Retirement Center.

Alvarez, the Sierra complex manager, told The Times that two federal agents dropped by one day to grill her about the visits and kickback offers of up to $300 per patient by Avetyan, who also owned Team Hospice in Lancaster.

“I wasn’t interested in that at all,” Alvarez, who was not accused of wrongdoing, said of the kickbacks. “I said, ‘No, I have a job, I don’t need that.’”

Authorities had been tipped off by a county social worker who was surprised that a resident she was visiting had been given a “hospice bed” when she was not ill, Alvarez said.

In 2018, the California attorney general’s office filed fraud charges against Avetyan and four others, alleging that her hospices had billed Medicare and Medi-Cal for $1.2 million for ineligible patients.

Avetyan had paid more than $180,000 in kickbacks for illegal referrals, some of them by a woman who worked in a doctor’s office and gleaned names from the patient roster, prosecutors alleged in a criminal complaint.

A different physician, Dr. Blanca Galapon, now 80, was accused of falsely certifying a dozen patients as terminally ill in exchange for unspecified payments from Avetyan, according to the complaint.

Avetyan pleaded guilty in April 2019 to one count of conspiracy to pay and accept insurance kickbacks and was given a suspended six-month jail sentence and placed on four years’ probation.

Galapon and other defendants cut plea deals for deferred prosecution or probation.

In January, Avetyan was barred from all federal healthcare programs, including Medicare and Medicaid, for at least five years. By early this spring, both Ace of Hearts and Team Hospice had closed their offices.

But court documents and other public records indicate that Avetyan sought continued involvement in the hospice industry.

At least five hospices based at one Van Nuys office building appear to have been spun off directly from Ace of Hearts or have significant links to it, The Times found. Online biographies that list two young women as chief executives of the five hospices describe both as former Ace of Hearts employees.

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One of them, Arpine Melikyan, is a 2019 graduate of Cal State Los Angeles who was an Ace of Hearts accountant and now heads up two other providers, Life Hospice and High Care Hospice.

In a 2019 lawsuit, Avetyan alleged that she agreed to pay Melikyan $5,000 a month and provide staffing and other resources in exchange for a 30% stake in the two hospices. Melikyan declined to comment on the lawsuit, which accuses her of reneging on the deal.

Avetyan is due back in court on Dec. 16, accused of violating her probation.

Prosecutors would not provide details, but said in an email to The Times that she continued to bill Medi-Cal for hospice services after being barred from the program.

Complete Article HERE!

End-of-life coach

— The art of dying well

For most of us, the word “doula” is firmly associated with a coach helping a mother through childbirth. A modern-day version of a traditional midwife, a doula, is not a healthcare professional, but rather a guide, whose goal is to comfort and support women in labour both physically and emotionally.

Derived from the Greek word δούλα (“servant-woman”), doula stands for a woman who lends her knowledge, experience and presence of mind during the arduous process of childbirth. In the Western world, the popularity of birth doulas started to gain traction in the early days of the reproductive justice movement back in the ’70s.

Striving for more natural and less medical experiences women turned to doulas, who’d often act as advocates for women and babies in hospitals which weren’t always friendly and accommodating.

Recent years have seen the rise to a different kind of doulas, quite the opposite of those attending to childbirth. These are “death doulas” who support people in their end-of-life journeys. Also referred to as “death midwives”, their vocation is a relatively recent phenomenon emerging as part of the mindset recognising death as a natural, accepted, and honoured part of life.

Death doulas are by no means there to assist in ending one’s life (at least in the countries where euthanasia is illegal), but rather to ease the transition both for the passing person and his or her loved ones, who stay behind/Sharon McCutcheon via Unsplash

There are remarkable parallels between being born and dying, and in both life scenarios, doula’s aim to reduce anxiety and confusion, manage the pain, and, if possible, make the experience more peaceful. Just as birth doulas are coaching mothers on birthing a baby, death doulas are coaching people on dying. They provide non-medical aid which is a mix of emotional and practical counselling that can make all the difference.

Christy Moe-Marek, an end-of-life doula from Minnesota, says that doulas emerged from the Baby Boomers, behind the natural birthing movement. They decided to take things into their own hands as far as dying goes: “They’re saying, no, I don’t want the death my parents had. We are rich in possibility, why can’t I make this whatever I want it to be?”

Death doulas – just like midwives – have been around since the beginning of humanity. Traditionally their roles were played by the wise women from the community or extended family.

However, with the disintegration of traditional societies and the extended family per se, we have lost touch with our roots as we often find ourselves helpless in the face of the imminent. Death customs and practices within families have all but vanished as palliative care was delegated to hospitals and the funeral industry was commercialised. But these days people are yearning for a better life – and death! – and this is when doula’s role becomes so crucial.

According to The New England Journal of Medicine, the number of Americans wishing to die at home rather than in a hospital environment is the highest it’s been since the early 1900s/Dominik Lange via Unsplash

They want to pass away surrounded by their family and friends, who could be overwhelmed by witnessing the final days of their loved ones while feeling helpless and powerless. The trade of a modern death doula has emerged as a response to the people’s fear of facing death and even contemplating it. Death doulas have started a conversation about dying and have, in some way, given voice to those making the transition. After all, these days many more people get a chance to linger on a bit longer despite terminal illnesses thanks to the advances in modern healthcare. In many cases, they do need someone to discuss their transition with and make it more meaningful.

Unlike death midwives of the past, our contemporaries are women (and sometimes men) old and young, coming from different paths of life. They help people on the threshold of passing to write letters to their unborn grandchildren, to arrange farewells with relatives; they may perform traditional or religious rituals for their charges or offer assurances.

Doulas bridge the gap between the dying and their families, facilitating conversations about death, explaining things and advising when it’s finally time to let go. Some say that working with a death doula opens people up to a more spiritual side of death with less anxiety and trepidation/Manikandan Annamalai via Unsplash

As death doulas are gaining more mainstream attention, there’s been an ongoing debate, whether they should provide free services rooted in the community. For instance, in communities of indigenous people or African people death doulas have continued to be a steadfast part of the culture. On the other hand, most of today’s end-of-life professionals aren’t being supported by specific communities and, thus, cannot afford to render their services for free. In big cities, where tightly-knit communities ceased to exist a long time ago, death doulas are usually hired by the family of the person nearing the end of life. Still, their responsibility remains with the dying, whether they are being attended to at home, or in a hospice.

In traditional cultures, the art of attending to the dying is passed down from generation to generation. But a skillset of a death doula isn’t “god-given”.

It is something that can be learned. These days one can learn the ways of a death doula by attending training courses or seminars. Neither in the US or Europe are there national regulatory agencies that would provide licensing and oversight. Most likely, their creation is just a matter of time. The decision to become a death doula is often made after attending a dying family member. Others translate years of experience as nurses and palliative care specialists into a new dimension, and some feel the need to make traditional passing-related rituals available to members of their communities. Groups that train death doulas are usually led by nurses and social workers who want to change the impersonal nature of the dying experience most people faces. In the US organisations like The Doula Program to Accompany and Comfort, in New York, The International End of Life Doula Association (INELDA), or Lifespan Doulas and other groups train people to become death doulas.

In Russia, death doulas are virtually non-existent, because palliative care is still in its infancy, and people are culturally opposed to an open conversation about death and dying/Bret Cavanaugh via Unsplash.

However, the need to make dying less clinical and remove the fear and stigma surrounding death has become tangible. Society seems to have gradually realised that dying people, in whose shoes we’ll all end up one day, deserve greater compassion and companionship in their final days. Shelby Kirillin, an end-of-life doula, based in Richmond, Virginia, reasonably wonders “Can you imagine if a woman was going through labour and no one around her was talking about it or preparing for it? There’d be an uproar if we treated birth like we treat death”.

When it comes to dying, traditions and modernity don’t necessarily have to clash. Indigenous cultures have long regarded death as an essential part of life, and even though thanks to modern healthcare options the process of dying these days can be virtually painless, a “good death” is more than just a painless one. That being said, the emergence of death doulas is, perhaps, the best thing that’s happened to humanity in a long time.

Complete Article HERE!

The “good death” revolution

—Companion animal euthanasia in the modern age

Home euthanasia sets a peaceful, more relaxed tone.

A good death is achieved by advocating for, and acting on, what is safest for the pet, what is most meaningful for the caregiver, and what will nourish the veterinary team

By Kathleen Cooney, DVM, CHPV, CCFP

Animal euthanasia has come a long way in the past 15 years. With the increased attention given to the human-animal bond, particularly during COVID; the emotional complexity of animals; and the recent and welcomed focus on veterinary wellness, the importance of a good death has risen to center stage. In forward-thinking veterinary practices, the euthanasia appointment is no longer an unpleasant burden in the day, but rather a rare gem of connectedness and intimacy so many of us look for in our professional lives. It provides teams the chance to slow down, to listen to stories, to take deep breaths in quiet reflection in an otherwise chaotic schedule. Euthanasia, while sad and heartbreaking, can lead to rich personal satisfaction when performed well. When love is at the heart of our work, the veterinary profession finds peace, even when life is lost.

Good euthanasia has evolved past the simple “one step” of giving an injection. It orbits around consistent components such as the right timing, compassionate staff, skillful techniques, and loved ones gathered close. The focus has been shifting to ensure the pet’s last moments are comfortable and peaceful, rather than just getting it over with as soon as possible—quality over quickness, in most cases. When it comes to euthanasia, if it’s worth doing, it’s worth doing right, especially since there are no do-overs.

To understand the scope of the “good death” revolution, we need to explore some key game-changing influences that have brought about the shift. The first worth mentioning is the attention paid by the American Veterinary Medical Association (AVMA) and other governing bodies to euthanasia techniques and animal welfare. Numerous revisions have been made to AVMA’s Guidelines for the Euthanasia of Animals, most recently in 2020. The document highlights the value and significance of proper technique choices and the ethical considerations we all must weigh, regardless of the species in question. Are they perfect? No, but they are extremely well-thought-out and closely match peer-reviewed literature. They will improve as research progresses and as society dictates.

A second influencer then has to be society’s demand on veterinary professionals to deliver a death worthy of the life itself. It is well understood pet owners largely view their animals as family members or loving companions. As evidenced further on in this article, loving pet owners regularly view the euthanasia appointment as a modest funeral. More and more are seeking those special touches that pay added respect for their companion.

As a home-euthanasia specialist, I’ve had many families over the years attend the euthanasia of their pet wearing suits and ties. Even though no one would see them, they dressed up to honor the life and the loss. Jessica Pierce, PhD, bioethicist and purveyor of the good death revolution, advocates for what she refers to as the sixth freedom: the freedom to die a good death. She adds this freedom to the already well-known five freedoms of animal welfare. “A good death is one that is free of unnecessary pain, suffering, and fear; it is peaceful; and it takes place in the presence of compassionate witnesses. It is, above all, a death that is allowed its full meaning.” The euthanasia of a family pet is significant and for many, will be their first experience with death.

A third major influence was/is the recognition by many in the veterinary profession that death needed to be more meaningful. The kind of experience we are talking about here is one that leaves the entire veterinary team feeling they provided the best medicine possible and supported the client throughout. Approximately 20 years ago, a small number of veterinarians and technicians throughout North America found just how enriching full devotion to the euthanasia experience can be. They shifted their appointments to focus on the bond as much as the act of euthanasia itself.

Early adopters had numerous things in common. They:

  • Took time to preplan and provide highly individualized care
  • Increased euthanasia appointment times
  • Offered home services
  • Provided sedation or anesthesia to all pet patients
  • Elevated bereavement support

In return for these specialty touches, clients showered them with thank you cards and told other pet owners about the wonderful care they had received. Through eventual collective sharing of their successes in advanced euthanasia work, other veterinary professionals joined in and the modern revolution began. Since 2011, at least seven books have been written focusing entirely on companion animal euthanasia (or contain chapters on the subject), more end-of-life care guidelines are available, and the number of pet bereavement organizations has skyrocketed. Today, there are more and more veterinarians specializing in euthanasia work, many of which offer animal hospice services as well. Animal hospice is a philosophy of care aimed at providing emotional and medical support for the dying pet and caregivers. As of early 2020, the International Association for Animal Hospice and Palliative Care (IAAHPC) touts more than 800 members, a number sure to grow in the coming years.

Have you ever thought about how much really goes into a euthanasia appointment? If you start to explore all the components of a good death experience, it’s no wonder euthanasia appointments are lengthening.

Here is a list of 14 essential components of companion animal euthanasia as developed by the Companion Animal Euthanasia Training Academy (CAETA).* Spelling out “good euthanasia,” each aspires to minimize stress for the pet, provide emotional support for the caregiver, and streamline the actions of the veterinary team.

G: Grief support materials provided
Examples: Printed pet loss guides, books, or direct links to online resources.

O: Outline caregiver and pet preferences
Examples: Talk about what’s important to the caregiver and pet. Match what they need.

O: Offer privacy before and after death
Examples: Make sure a family has time to be alone with their pet if requested.

D: Deliver proper technique
Examples: Always use the most efficient and appropriate technique based on the pet’s health and available supplies.

E: Establish rapport
Examples: Slow down and emotionally connect with the caregiver and pet before proceeding.

U: Use of pre-euthanasia sedation or anesthesia
Examples: Sleep before euthanasia reduces anxiety and pain, and increases technique options.

T: Thorough, complete consent
Examples: Every euthanasia must be properly documented in records.

H: Helpful and compassionate personnel   
Examples: Engage staff to assist who are naturally empathetic. The use of a “euthanasia attendant” is strongly encouraged (more about this later).

A: Adequate time
Examples: Slow down, block out enough time to complete all 14 components.

N: Narrate the process
Examples: Describe what each step of the process looks like, being mindful to keep language simple and uncomplicated.

A: Avoid pain and anxiety   
Examples: Be gentle when handling the pet, use sedation whenever possible, and go slow to reduce anxiety.

S: Safe space to gather   
Examples: Consider using a quiet room in the hospital or performing the euthanasia at home.

I: Inclusion of loved ones
Examples: Talk to caregivers about who should to be there, including other household pets bonded to the one being euthanized.

A: Assistance with body care   
Examples: Preplan with families around what’s important to them and carry out their wishes as if the pet were your own.

In addition to veterinarians carrying out the medical act of euthanasia, vital support staff help ensure everything goes well. Empathetic veterinary technicians, veterinary social workers, assistants, receptionists, and grief support personnel work together to ensure the pet is Fear Free and the client is carefully looked after. CAETA advocates for use of what it calls the euthanasia attendant. This person is responsible for guiding the family unit through the appointment from beginning to end. While many people may be involved in the pet’s care, one consistent person increases the likelihood that everything flows smoothly.

If you’ve been watching for change, you’re sure to have noticed the increase in specialty mobile euthanasia services around the world. According to online directory In Home Pet Euthanasia, nearly 600 mobile services have been listed since 2009 as providing home euthanasia services in Canada, the U.S., and England. Nearly 80 percent specialize in euthanasia work or the broader field of animal hospice, including euthanasia services. The shift toward home euthanasia is well-founded and necessary for many families. Pets feel safer at home. And for loving owners, being at home for their pet’s euthanasia provides them privacy and reduces the challenges of driving and interacting with others while in the midst of grief.

A good death is achieved by advocating for, and acting on, what is safest for the pet and what is most meaningful for the caregiver.

Home euthanasia has proven extremely rewarding work for those who offer it. It’s also gaining in popularity, with one service reporting its team of veterinarians assisted upward of 50,000 pets in the home setting in 2019. That’s an impressive number and indicates the trend of home euthanasia is here to stay.

Like any other progressive movement, advanced euthanasia did not happen overnight. And there are lingering obstacles that continue to stifle necessary change. Number one is the old paradigm that if it’s not broke, don’t fix it. It can be hard for veterinary teams to make lasting change around euthanasia. Reshaping a hospital’s culture takes time and commitment, but it can be done and done well.

Consider the following steps to create lasting change:

  • Dedicate one month a year to euthanasia-related discussions
  • Get everyone’s input on desired improvements
  • Create a euthanasia manual and refer to it regularly
  • Hold euthanasia rounds to review successes/challenges
  • Have multiple team members obtain advanced euthanasia training

These days, the veterinary profession recognizes the value of appropriate self-care. In this respect, self-care with regard to euthanasia begins long before the appointment. It is becoming standard practice to discuss a veterinary team member’s professional limits around euthanasia. North American Veterinary Community (NAVC) and the Human Animal Bond Research Institute (HABRI) human animal bond certification program focuses on this concept in its euthanasia module. It describes how veterinary teams should take time to determine who enjoys (yes, enjoys) euthanasia work, to write down how many euthanasias one can help in a day, week, etc., and how the team plans to practice self-care. Examples include team outings, fun food days, and setting limits on the amount of time worked in a day. The likelihood of compassion fatigue is high if care is not properly taken from the onset of euthanasia-related work.

As far as we’ve come, there is always room for growth. New techniques, improved euthanasia education opportunities, and better client support tools are on the horizon. We continue to hone our skills around gentle animal handling and pay increased attention to where we gather for euthanasia. This has never been truer than during the COVID pandemic. Veterinary teams have shifted the delivery of care, ensuring euthanasia remains an essential procedure. Creative approaches to preplanning, social distancing, technique selection, and appointment timing have played vital roles in protecting the human-animal bond. The veterinary profession dealt with these necessary modifications swiftly and compassionately. And it’s important to mention that while this article has been focused on euthanasia, death is a process, not always just a moment in time. Good death also refers to the meaningful journey leading up to death, be it natural or via active euthanasia. In the words of Benjamin Franklin, “Well done is better than well said.” To help the good death revolution flourish, we must act accordingly. A good death is achieved by advocating for, and acting on, what is safest for the pet, what is most meaningful for the caregiver, and what will nourish the veterinary team. If you haven’t already, how will you join the revolution?

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.

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