Category: Preparing for Death

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

by Steve Lundeberg

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Complete Article ↪HERE↩!

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

Why is it so hard?

By Charlotte Grinberg

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Complete Article ↪HERE↩!

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Indigenous death doula mentorship program aims to teach youth to help others through grief

‘I just want to be able to support my family and my community [when] people die’

Kayleigh Lagimodiere and her mother Dana Connolly. Lagimodiere is one of 12 Indigenous youth who have been accepted into the Indigenous death doula mentorship program.

By Lenard Monkman

A new death doula mentorship program is being offered to Indigenous youth to equip them with skills to help others deal with grief and loss in their communities.

“It’s important for me to learn about this work because prior to colonization, I think we shared a different relationship with death. One that wasn’t so scary and fear-driven,” said Kayleigh Lagimodiere.

Lagimodiere, who is Cree, is 17 and one of 12 young people chosen to take part in the Indigenous Death Doula Program being offered by Blackbird Medicines in partnership with Canadian Roots Exchange.

A death doula is someone who supports people who are experiencing grief and or going through the process of death.

In January, Lagimodiere’s aunt Tracey Stevenson died and she got some experience doing death doula work.

“An elder from Swan Lake [First Nation] came and taught me how to prepare the body,” said Lagimodiere.

“That was like the first time that I had actually seen a dead body. Prior to that, at funerals, I wouldn’t go up.”

Lagimodiere said there have been a few recent losses in the family and they were having a hard time navigating through the grief.

“I just want to be able to support my family and my community [when] people die,” said Lagimodiere.

“I want to be able to help restore our practices that were there and to help people.”

The experience inspired her to apply for the Indigenous Death Doula Program, which was accepting applications from youth aged 12-29.

Lagimodiere said there were a number of different interest options that were available to applicants. She chose palliative care, harm reduction, cultural death practices, legacy planning and culturally grounded death and dying resources.

Indigenous grief

The program was started by Blackbird Medicines and its Indigenous death doula collective, which includes Connor Sarazin, Tasheena Sarazin, Colleen Cardinal and Elaine Kicknosway.

Founder Chrystal Toop, Omàmiwininì (Algonquin) from Pikwakanagan First Nation, started doing death doula work in 2018.

Chrystal Toop is the founder of Blackbird Medicines. The organization is offering an online death doula mentorship program for Indigenous youth ages 12-29.

“I come from the background of a full spectrum or a life spectrum doula worker,” said Toop.

“So I started out working with babies, pregnancy, things like that. But there’s just a huge demand on the other end, on that death spectrum.”

According to the website, Blackbird Medicines offer a range of services including virtual consultations, slideshows and videos for funerals, virtual funerals and aftercare to support people who have lost loved ones.

“For a lot of us, we came to this work because we were doing social services, front line work,” said Toop.

“Some of us have stories around missing and murdered men, women, girls, two spirit. And we have these personal experiences, so we recognize that Indigenous death doula work includes harm reduction from death.”

For the doula program, they are hoping to get more young people involved.

“The program itself is a gentle introduction to people, to support them,” said Toop.

It features two individual one on one sessions, as well as two group sessions with the whole collective, all of which will be done online.

Kicknosway said doing death doula work comes naturally to her. She has helped friends and family who have lost loved ones to cancer, but has also helped families go through things like suicide or other tragedies.

“What does Indigenous grief look like?” said Kicknosway.

“We need to make it a natural place to talk safely and to have spaces for this work.”

Complete Article ↪HERE↩!

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Hospices Seek to Balance Technology with the Human Touch

By Holly Vossel

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

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

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

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

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

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

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

Complete Article ↪HERE↩!

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Hospice Workers Share What They Wish Everyone Knew About Death

By Emily Laurence

When Daniel Lynn tells people he’s a hospice volunteer, he says they usually respond by asking him a question: Why? American culture tends to be put off by anything related to death; it certainly isn’t a welcome topic at a party or around the dinner table. “People ask me why I would want to spend my time doing something so sad, but I find it incredibly rewarding and meaningful,” Lynn says.

Palliative care physician Christopher Kerr, MD, PhD, has gotten similar responses when he tells people about his occupation. Dr. Kerr started working in hospice care—a type of health care focusing on managing a terminally ill patient’s pain and symptoms, as well as their emotional and spiritual needs at the end of life—to supplement his income as a doctor. Up until that time, Dr. Kerr’s job only focused on one outcome—saving patient’s lives—so he admits that he wasn’t quite sure where he would fit into a health-care space where death was imminent. “When I first started, to be honest, I didn’t think there would be much for me to do,” he says. “As a doctor, you’re taught that death is the one thing to avoid.”

The years Dr. Kerr has worked in hospice care, treating thousands of people who are dying, have made him see the dying process in a whole new way. “Death is not a sad experience for everyone,” Dr. Kerr says. His book Death Is But a Dream shares stories of patients he has cared for in hospice, showing that dying is much more than suffering. It can be a time when many become emotionally awakened, and there can be levels of comfort and peace that can’t be explained by science.

This year, of course, death has been on our collective minds more than ever due to the pandemic. It’s devastating to lose a loved one—to COVID-19 or otherwise. But hospice workers offer special insight into what’s often overlooked when we talked about dying. And with their observations comes something we all collectively need right now: healing.

How relationships can change when death is imminent

Lynn became a hospice volunteer in 1985, after both his wife and father died of lung cancer. “My current wife and I are both hospice volunteers in Williamsburg, Virginia,” he says. “And we have two Bernese mountain dogs who work as therapy dogs with us in the hospitals and nursing homes.”

Lynn doesn’t deny that losing a loved one is extremely heartbreaking. “When my first wife was dying of lung cancer, I grieved deeply,” he says. Experiencing the need for comfort during this difficult time in his life was part of what inspired him to be there for others.

Just as people live in different ways, people die in different ways. But something Lynn has noticed in his work is that dying patients often prioritize relationships in a way they didn’t earlier in their lives. “Something I often see is that many people want to make amends and improve relationships that have been damaged,” he says. Family members who haven’t talked in years may start communicating regularly. Grudges are dismissed, replaced by forgiveness and peace.

Angela Shook works as a death doula, a trained professional who supports someone at the end of their life. She’s also seen how important relationships become at the end of life. “Many of the people I’ve worked with have a fear that they’ll be forgotten, so something we often do is a legacy project, which is a way of helping friends and family remember them [after they die],” she says. “One woman I worked with was known in her family as this amazing cook. Everyone loved her food. So for her legacy project, we made a cookbook of her recipes that all her children could have. And we used her old clothes to make an apron for her daughter. It was extremely meaningful to her, and also to them.” In these ways, a death doula can help make saying goodbye easier for both the dying and the living.

Experiencing comfort unexplained by science

While many people equate death with suffering, Dr. Kerr says something that has surprised him the most about working in hospice is the peaceful visions that often come in a person’s final hours. He says 88 percent of his hospice patients report seeing visions as they die. Often these visions—vividly real to the person experiencing them—are of people who have died before them, and they provide a great sense of comfort, peace, and even joy.

Dr. Kerr adds that dying children often see pets who have passed away. “Children don’t have the same language that we do to talk about death, but the visions they describe give them a sense that they are loved and that what is happening to them is okay,” Dr. Kerr says.

He cannot offer a scientific explanation for these phenomena. “There’s this assumption that people have these visions because their brains are changing, becoming deoxygenated, or they are medicated and confused, but that’s not the case,” he says. “We know that by looking at the brain; it’s not changing biologically or functionally. I think people are changing very much spiritually.”

“To me, visions like these show that we really don’t die alone. And there can be comfort and even joy in dying.” —Angela Shook, death doula

Shook says many of her clients have also had visions. She and Dr. Kerr say it’s something that happens regardless of religious or spiritual beliefs; even those who don’t believe in a higher power or an afterlife can experience visions. “I would estimate visions are part of about 90 percent of the deaths I’ve been apart of,” Shook says. “One 83-year-old woman I worked with had been feeling very agitated for the three days. But when I walked into her room one day, she had a peaceful smile on her face. I looked over at her and she was rocking her arms, as if she was holding a baby.” The patient died shortly after that, and Shook shared what she saw with the patient’s son. “He told me that his mom’s first daughter had been a stillborn and she had often said that she couldn’t wait to see her daughter in heaven one day,” Shook says. “To me, visions like these show that we really don’t die alone. And there can be comfort and even joy in dying.”

Not everyone, though, has happy visions. In his book, Dr. Kerr says his research has found that in 18 percent of his patients who have visions, they are more like nightmares. “There seems to be a correlation between people who have had very traumatic experiences in life or a lot of regret [and experiencing negative visions],” he says.

Of course, it would be unfair to paint everyone’s end of life experience as peaceful and uplifting. The truth is, death is sometimes accompanied by pain and suffering, both physical and emotional. “Often, people have a question of ‘why me?’” Lynn says, adding that some are angered by what’s happening to them. It seems death, like other stages of life, isn’t all good or bad. Still, few people talk about the moments of peace—and even joy—in the process, and that’s what Lynn, Shook, and Dr. Kerr hope to shed light on.

“Becoming a death doula and spending time with the dying has been the greatest, most beautiful gift of my life,” Shook says. “It’s strengthened my belief that there’s more beyond what we can see.”

What hospice care has looked like during COVID-19

Both Dr. Kerr and Shook say their jobs have changed tremendously during the pandemic, and have caused them to think even more about the importance of end-of-life care. “Our work in hospice and palliative care has become invaluable during the pandemic,” Dr. Kerr says. He adds that, for him, working during the pandemic has been a struggle as the way he works has changed tremendously. “Personally, I feel a bit lost,” he says. “My work is most meaningful when defined by direct interpersonal relationships with patients, families, and colleagues.” But as hospitals and care facilities tightly restrict visitors to reduce the spread of COVID-19, cultivating those relationships is extremely difficult.

Shook says she feels her work has become more vital than ever in helping loved ones find avenues of closure. “Many have lost loved ones and been unable to mourn at a service or traditional funeral because of social distancing restrictions,” she says. “It is so important to take the time to grieve and realize that grief looks different for everyone.” Since, for many, attending a funeral isn’t a possibility right now, it can make finding other ways to say goodbye—such as through a legacy project—especially meaningful right now.

“Those of us who work at the bedside of the dying can attest that patients, in the face of what may look to most like a lonely death, do experience love, meaning, and even grace.” —Christopher Kerr, MD, PhD

Shook says she has still been providing her services as a death doula virtually, as meeting in person with families is not currently possible. “Many facilities and hospices in which many doulas work have restrictions on visitors. During this time, doulas [like myself] have been offering virtual support through web conferencing, calls, letters, FaceTime, and more,” she says. “With so many being isolated, doulas are more important than ever and can still support the dying and their loved ones from a distance.”

Dr. Kerr says that many family members of his patients have expressed devastation and sadness at not being able to be physically present for their loved one’s final moments. He sympathizes with this sentiment, but offers up some words of comfort. “The dying process includes altering levels of alertness and progressively deeper sleep, and include vivid pre-death dreams,” he says. “[In their final days], the majority of patients see not tubes or monitors but the faces of predeceased loved ones. They revisit the memories of being held and cherished, the apotheosis of a life rather than its demise. They teach us that the best parts of having lived are never truly lost.”

This, he says, reveals something important about the dying process, whether it’s during a pandemic or not: “The totality of our human experience can never be defined by or reduced to its last moments,” he says. “Those of us who work at the bedside of the dying can attest that patients, in the face of what may look to most like a lonely death, do experience love, meaning, and even grace. The dying often experience a summation of their life’s best moments and they leave us feeling more connected than alone.”

Complete Article ↪HERE↩!

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

Some hospice agencies have been reluctant to go into homes lately

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

By Sherri Snelling

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

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

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

Hospice in the Time of Coronavirus

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

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

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

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

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

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

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

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

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

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

Hospice Telehealth

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

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

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

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

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

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

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

From Grief to Gratitude

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

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

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

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

COVID-19 Sparks ‘The Talk’ For Families

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

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

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

Complete Article ↪HERE↩!

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How California doctors are fixing how we die

Doctors change life-ending drugs to ease the final hours

Dr. Lonny Shavelson

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Modern medicine excels in ways to save a beating heart.

Yet hardly anything is known about how to humanely stop one.

Frustrated by the dearth of information about how to aid dying, Berkeley’s Dr. Lonny Shavelson is gathering data to guide other physicians through this new, important and sorrowful clinical frontier. Legalized in 2015, California’s End of Life Option Act allows doctors to prescribe life-ending drugs to terminally ill patients.

“We’re doing a medical procedure. And whatever is done in medicine should be done well, and consistently,” said Shavelson, 68, a UC San Francisco-educated former Emergency Room physician.

“Now we can tell patients: ‘We’re giving you the best protocol we have,’ ” said Shavelson, whose Bay Area End of Life Options medical practice has overseen 232 deaths. “And we’re getting better and better.”

When Californians passed the medical aid-in-dying law – inspired by Oakland’s Brittany Maynard, San Mateo’s Jennifer Glass and others who sought to end their suffering from cancer – voters assumed it promised them a neat Shakespearean-styled ending, like Romeo’s quick poisoning in Verona. That was the goal, but it didn’t always happen.

A little-known secret, not publicized by advocates of aid-in-dying, was that while most deaths were speedy, others were very slow. Some patients lingered for six or nine hours; a few, more than three days. No one knew why, or what needed to change.

“The public thinks that you take a pill and you’re done,” said Dr. Gary Pasternak, chief medical officer of Mission Hospice in San Mateo. “But it’s more complicated than that.”

So Shavelson, in collaboration with Washington-based retired anesthesiologist Dr. Carol Parrot, set out to compile data to help doctors help their patients. At a UC Berkeley-based conference last February, they co-founded the American Clinicians Academy on Medical Aid in Dying. The Academy’s 240 clinicians are now contributing and sharing their own experiences.

Dr. Lonny Shavelson, of Bay Area End of Life Options, looks over data at his home office in Berkeley, Calif., on Tuesday, Feb. 18, 2020. Shavelson is leading a data collection project to learn what medications most quickly and gently bring the person to their requested death under the 2016 End of Life Options Act.

To each deathbed, seated with grieving family members, Shavelson brings a clipboard with drug names and dosage levels.

As minutes tick by, he measures falling oxygen levels, slowing cardiac rhythms and fading respiration. He tracks outcomes while providing care.

The pharmacologic findings, shared with clinicians nationwide, are dramatically reducing the incidence of long, lingering and wrenching deaths.

“It’s really helpful to have someone actually studying the utility of what it is we’re doing,” said Pasternak. “So much of what we’re doing has arisen empirically. He’s collected such great data.”

“Patients want a medication that is effective. They want a swift, peaceful death,” he said.

Using the initial drug regimen in place when the law was passed, 34% of all patients took longer than two hours to die; one man died after 11 hours. A second regimen reduced that to 20%. With the current protocol, fewer than 10% of patients take longer than two hours to die, and most patients die in 1.1 hours, on average.

The protracted deaths didn’t create suffering for patients; they are in a deep coma. But the lengthy vigils can be agonizing for loved ones.

“After two hours, people were starting to get concerned, and restless,” Shavelson said. They wonder what’s happening. People start walking around the room, going into the kitchen. It disrupts the meditative mood. Between two and four hours – that’s not ideal. Anything over four hours we consider to be problematic.”

“I was looking at what was happening and thinking: ‘This isn’t as good as it’s been hyped up to be,’ ” he said.

There’s no repository of information to help doctors in states that have passed aid-in-dying laws, representing 22% of the U.S. population. The U.S. National Institutes of Health won’t fund the research. Medical schools don’t teach it. Hospitals don’t oversee it. Without that official support, medical journals won’t publish any findings.

Traditional medical research is conducted at universities and medical schools, “and they won’t touch the topic,” said Shavelson. “They’ve completely abrogated their responsibility to patients who are dying … bowing out of their traditional role of teaching, research and providing quality care. It’s taboo. There’s still a stigma.”

When aid-in-dying was first passed in Oregon in 1997, patients were given secobarbital, sold under the brand name Seconal. It induces deep sleep, then a coma that is so deep that the brain no longer drives respiration.

But that drug wasn’t consistently quick. Then it became prohibitively expensive, finally unavailable.

To replace Seconal, the doctors invented a three-drug cocktail — a painkiller, sedative and a heart-slowing agent — based on their experiences with overdose deaths. They later added another cardiac drug. But problems remained.

While sitting at the bedsides of several six-hour deaths, Shavelson pondered what was going wrong. He speculated that one cardiac drug was rendered ineffective by the large quantities of the other drugs. So he separated that out and gave it earlier, so it had time to act.

When some delays persisted, he replaced one of the heart-slowing drugs for a heart-damaging drug.

Based on newly compiled data from Academy clinicians, the formula is about to be improved again, pending confirmation of results.

Shavelson and Parrot have identified which patients are more likely to linger, and can recommend adjustments. People with gastrointestinal cancer, for example, don’t absorb the drugs as well. Former opiate users often have resistance to some of the drugs. Young people and athletes tend to have stronger hearts and can survive longer with low respiration rates.

“We’re learning. Hypothesis, data and confirmation. This is what science is,” he said. “Our job is to stop the heart; that’s what they want us to do.

“We haven’t made it less sad. It’s still death. There’s tears and crying,” he said. “But it’s a better ending.”

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