These conversations are among the hardest I have had as a doctor

Few people want to die alone, and even fewer want their loved one to be alone in the final weeks, days and hours of their life.

By Julia Corfield

It’s a cold Saturday morning in Melbourne and I am a doctor at work in a palliative care unit. I have just reviewed one of my patients, whose body is beginning to reveal some of the tell-tale signs of dying.

His son stands over him and sadly remarks that “this is a bad time to die”.

With strict visiting restrictions firmly in place across Melbourne, there is a very real chance that his father will die alone and he knows it. This is the new normal.

In a state of disaster, there are a set of rules and visiting restrictions for families and friends of those dying in a hospital setting. These restrictions vary slightly between health services, but the message is the same: as few visitors as possible, for as short a time period as is reasonable.

For months now, hospital staff (myself included) have been chanting the mantra of seemingly arbitrary visiting windows, maximum numbers of visitors per patient and numbers of visitors permitted at the bedside.

In recent times, I have found myself asking questions such as “do all six of your siblings need to visit?” or “could your grandchildren say their goodbyes via FaceTime?”. These conversations are among the hardest I have had as a doctor.

Many find these new rules unacceptable, and with good reason. Few people want to die alone, and even fewer want their loved one to be alone in the final weeks, days and hours of their life.

However, these are not normal times, and a balance must be struck between compassion and safety. Across the world, and now in Victoria, we know that many people with COVID-19 are dying alone; but so are those without COVID-19. Both are tragic realities.

Under normal circumstances, achieving “a good death” is laden with obstacles, let alone in a pandemic. An inherent challenge is that a good death is an individualised experience, reflecting the diversity of the human person.

There are some commonalities across what constitutes a good death, and the company of friends and family features almost universally.

A current patient comes to mind — a woman in her 70s dying of lung cancer — who tells me almost daily that her breathing is bad but the feeling of loneliness even worse. She would like to see her grandchildren, but no children are allowed in the hospital.

Her brother visits, but the allocated two-hour visiting window is not long enough to fill the void created when faced with one’s own mortality. And so on. Her story is not unique.

Dying in a pandemic has brought with it new and more challenging obstacles, ones that make us question what it means to be human. Death is normal, but dying alone is not. So, frankly, when I hear my patients and their relatives say that it is a bad time to die, I can’t help but agree.

Ultimately, how we live and how we die tells us about society as a whole. Today, people die alone to protect society and this at least may be a small source of solace. Their strength and determination to push forward and adapt to this strange new world is a testament to the human spirit.

I hope, though, that those dying in this COVID-19 world know that their sacrifice has not gone unnoticed. Every day, their struggles are seen and felt. Many have had to forgo the so-called good death, and that is the undeniable truth.

Complete Article HERE!

Death doulas help the dying meet their end with affirmation

Death doula Anna Adams sits in an office at Holistic Hospice in San Antonio on Oct. 28, 2020. Just as birth doulas help expectant parents bring new life into the world, end-of-life doulas help the dying cope with their next journey. They help the dying and their survivors face death with empowerment and affirmation instead of fear and anxiety.

By RENÉ A. GUZMAN

Andrea Aycock can only sometimes look at the photos of her hands clasped with her mother’s just before she died in May. But she’ll always cherish the helping hand she got from Anna Adams, an end-of-life doula in San Antonio who preserved that personal moment and so many more for Aycock in her mother’s dying days.

“Anna came and took care of her,” said Aycock, a call center operator in San Antonio. “(She) just mainly comforted me.”

Just as birth doulas help expectant parents bring new life into the world, end-of-life doulas help the dying cope with their next journey. They help the dying and their survivors face death with empowerment and affirmation instead of fear and anxiety.

Also known as death doulas, these trained professionals provide the terminally ill and their families physical and emotional support before, during and after death, the San Antonio Express-News reported. These are nonmedical services that often include relaxation exercises, funeral planning, educating the family on their loved one’s condition and just simple companionship.

Adams sees death awareness becoming more commonplace in the United States in the way that Día de los Muertos (Day of the Dead) celebrations have grown more mainstream and that there are more calls for services of end-of-life doulas.

“Cultures like the Mexican culture that have these beautiful traditions of staying in connection with that (dying) process are so admirable and so beautiful. Doulas want to make sure that is available to all people,” said Shelby Kirillin, an end-of-life doula in Richmond, Va., and program development manager for the International End of Life Doula Association (INELDA) in Jersey City, N.J.

Kirillin sees the rising awareness of death doulas as part of what she calls a “death positive movement,” where more people are getting back to supporting their dying loved ones at home and engaging with their death more up close and personal, much as their ancestors did.

“In the last 100-plus years in our Western culture, that has been taken away from us,” Kirillin said. “How to be with someone who was dying, how to touch them. That was something that we knew how to do.”

INELDA is one of just a handful of death doula organizations in the nation and was launched just five years ago. Co-founder Henry Fersko-Weiss created the first end-of-life doula program in the United States at a New York City hospice in 2003.

Kirillin estimates INELDA has around 40 certified death doulas across the country, yet has trained around 3,000 individuals in death doula care. Many just sign up to learn more about facing death and don’t pursue death doula work, she said, while others branch off to do their own training.

Most death doula services come in three phases.

The first is planning and preparation, which involves getting a terminal patient’s affairs in order and asking some tough questions that call for honest answers. Where does that person want to die? Who do they want present for those final moments? What so they absolutely need to say or do before they’re gone?

Kirillin said that first phase often addresses the dying individual’s regrets and unfinished business, as well as any advance directives, wills, etc. Often referred to as “legacy work,” such planning makes it easier for family to understand and respect the dying person’s wishes.

Fran Morgan is in that early stage with her dying mother Rosalee, who receives hospice care at the private residence of a family friend.

“With Anna in the picture, she will be advocating for all of the things that need to happen,” said Morgan, a retired telecommunications company manager in San Antonio. “It will release me from those responsibilities, and I can just be with my mom and cherish those final moments.”

That second phase is called the vigil, usually the last four or five days of the dying person’s life where end-of-life doulas and family members spend more time at their bedside.

“I call them my angel vigils,” Adams said.

During her doula vigils, Adams, 38, often creates a soothing space for the dying with soft music and dim lighting. Sometimes she’ll add a favorite scent with aromatherapy. Most times, she just gently massages her client’s arms and holds their hands.

And in those final moments as they take their last breaths, Adams comforts them with what they most want to hear, be it Bible verses, soothing music or just someone to say it’s going to be OK.

The final phase of a death doula’s work addresses survivors’ grief. Kirillin said that involves circling back with the family a few weeks after their loved one’s death to check on their emotional well-being.

Kirillin stressed that end-of-life doulas do console families, but are not licensed grief counselors and will refer families to such resources if necessary.

When it came to caring for Aycock’s mother, Adams mostly helped with her bedside care and keeping her visiting nurses on task. Adams also explained to Aycock any of her mother’s diagnoses she didn’t understand.

Then there was that time Adams took those hand photos of Aycock and her mother. Difficult as it is for Aycock to look at those photos, much less share them, she still holds them close.

She holds Adams’s work even closer.

“It is the best help that you can get,” Aycock said. “They provide comfort not only for your loved one that is going through the transition, but for you.”

Morgan expects to experience more of that care from Adams. “I’m looking forward to the relationship that we’re going to have,” said Morgan, who started working with Adams around three weeks ago. “For now my initial experience (and) impression is she certainly has the heart for what she’s doing.”

Adams’s first experience comforting the dying came when she was 16. Fresh from certification as a nursing aid, Adams tended to a best friend’s cousin for several months at her home with bathing and conversation. That care continued when that cousin transferred to hospice care and well up to her death.

“So we just had a bonding moment. I gave her that sacred zone,” Adams said. “That kind of piqued my interest.”

Adams went on to pursue a career in hospice, then for the last four years worked as an EMS manager and dispatcher for a private company. But something pushed her back into working with the dying.

“I told my family, ‘God wants me to do this. God is keeping me in line with this,’ ” Adams said.

At the start of this year, Adams got her end-of-life doula certification. Then over the summer, she partnered with fellow certified doula Sonja Koenig to launch TX Doula Movement, an online training and certification course for death doulas, senior care doulas and doula consultants.

Adams knows of just a handful of death doulas in San Antonio right now, but she expects that number to double later this year when around five of her TX Doula Movement students complete their certification. Adams plans to launch her own doula training service next year.

Adams said the coronavirus has not deterred her from her work, save for having to incorporate more video consultations with families and masks and frequent hand-washings during visits. She has yet to provide end-of-life doula services to someone with COVID-19, but one of the hospice companies she works with takes in COVID-19 patients.

“I don’t have a problem working with COVID patients,” Adams said.

Adams said most hospitals still don’t work with death doulas, but hospice services are slowly warming up to them as adjuncts to their own care.

“It is relatively new, but we’re seeing it more,” said Rachel Hammon, executive director of the Texas Association for Home Care & Hospice in Austin.

Holistic Hospice Care is one of two hospice centers in San Antonio that works with Adams. Administrator Erica Sandoval said Adams has been a welcome bridge between families and clinical teams.

“She can get on (everyone’s) level,” Sandoval said. “And she’s very calm and very patient. And she just wins their trust and they feel very comfortable with her.”

Like Adams, Sandoval, too, sees parallels between death doulas and Día de los Muertos, such as the memory books the doulas make for their clients and the Day of the Dead tribute altars families make for their lost loved ones.

“I definitely think that there’s a good association to that because they are (both about) wanting you to cherish their memories and enjoy the last moments and everything that you can remember of the individual,” Sandoval said.

Complete Article HERE!

End-of-Life Experts Call for Expansion of Patient-Centered, Goal-Concordant Care

By Holly Vossel

A deadly worldwide pandemic has helped to expose pitfalls in a broken health care system, drawing increased awareness and attention around the delivery of serious illness and end-of-life care, according to hospice and palliative care experts speaking at End Well’s Take 10 virtual conference.

The virus has claimed more than 1.6 million lives globally since its onset, according to a recent World Health Organization report which stated that the United States continues to bear the brunt of the pandemic’s effects, accounting for 86% of new deaths worldwide in the last week alone. According to a number of health care stakeholders, the government and the health care system itself hasn’t sufficiently adapted to meet patients’ needs during the crisis.

“We’ve been putting our elderly and disabled in solitary confinement for months, and that was understandable during the first few weeks where we didn’t understand anything about the virus or how to keep people safe. We saw entire units where elderly people and disabled people died, but now we know how to keep people safe,” said Atul Gawande, M.D., a surgeon, writer and public health leader, at the End Well event. “I myself have family with serious health issues and they need long term care, but we’re told we have to sign away the possibility that we’d ever see them again, that we’d ever hug them again and that’s just unacceptable. They won’t provide the [personal protective equipment (PPE)] and the training to make such things as possible, and that is outrageous.”

Gawande is founder and chair of Ariadne Labs, a joint center for health systems innovation, and of Lifebox, a nonprofit organization aimed at making surgery safer globally. He is also co-founder of the Massachusetts Serious Illness Care Coalition and serves as board chairman of Haven Healthcare. Gawande is among the providers calling for fundamental changes to the health care system.

A key component of that change would be to promote end-of-life and goals-of-care conversations among patients and families. Gawande cited surveys conducted by the Massachusetts Serious Illness Care Coalition, an organization he founded, which indicated that only about 50% of people who have a serious health condition have discussed their wishes with their loved ones. Only 25% have had such conversations with their clinicians.

“When they have those conversations they’re not at all confident that those wishes will be followed. That should be an outrage,” Gawande said.

COVID-19 has disrupted the health care system as providers faced lack of protective resources, staffing issues and revenue losses. Hospices have been pummeled by the disease’s spread, taking hits to operations and finances and facing difficulty accessing facility- and community-based patients.

Some of the roadblocks to quality end-of-life and serious illness care often stem from social determinants of health, lack of awareness around hospice care, and racial divides in accessible care. While these issues are gradually coming to the forefront of discussions in the end-of-life space among clinical, business and policy leaders, stakeholders are renewing calls to accelerate a reorientation of the health care system towards patient-centered, goal-concordant care.

“We all deserve a system that we’re not just tolerating,” said Mark Ganz, president and CEO of Cambia Health Solutions at the End Well Take 10 event. “Let’s resolve as we accelerate out of this curve called 2020 that we take some of the difficult things we’ve seen and talked about and we turn it into a thing of light. We have the opportunity to invent the systems that allow us to truly see the patients and their loved ones in a new way. We need to act and act now.”

Complete Article HERE!

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!