Category: Preparing for Death

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‘We Have to Make a Concerted Effort to Be Less Alienated from Death and Dying’

A conversation with Anita Hannig, author of ‘The Day I Die: The Untold Story of Assisted Dying in America’

By Richard Harris

Like taxes, death is still a certainty. But in America, the end of life isn’t what it used to be.

Today, one in five Americans lives in a state that permits medical aid in dying, sometimes simply called assisted dying. The idea is terminally ill individuals who have six months or less to live can apply for a medically assisted death to limit their suffering. And if they meet the criteria, they can have some say when they will take their last breath.

It’s been nearly 25 years since the country’s first assisted death law — Oregon’s Death With Dignity Act — went into effect. And since then, eight other states — Washington, Vermont, California, Colorado, Hawaii, New Jersey, Maine and New Mexico, as well as Washington, D.C., have enacted their own versions. What all jurisdictions with medical aid in dying have in common is the requirement that the patients must be of sound mind, have less than six months to live and they must be able to self-administer the lethal medication, prescribed by a physician, to end their lives.

Eleven other states have introduced medical aid in dying bills during the 2021-22 legislative session. It’s a growing movement that’s largely under the radar, much as death is in this society.

Assisted death is “not the path of least resistance. For many it’s the path of most resistance.”

In the latest survey by Susquehanna Polling & Research, two out of three voters (67%) said if they “had an incurable, terminal illness, still had a sound mind but less than six months to live and met the legal requirements,” they would want the option of medical aid in dying.

As the baby boomers age, medical aid in dying is expected to be an even bigger issue in the years ahead.

Anita Hannig, associate professor of anthropology at Brandeis University in Waltham, Massachusetts, says assisted death is “not the path of least resistance. For many it’s the path of most resistance.”

Indeed, the assisted dying laws in the ten U.S. jurisdictions are among the most restrictive in countries with such laws. That hasn’t stopped opposition from some religious and right-to-life groups, among others.

For her new book, “The Day I Die: The Untold Story of Assisted Dying in America,” Hannig spent hundreds of hours over five years on the frontlines of assisted dying in the Pacific Northwest, including witnessing several deaths among those who availed themselves of the law.

Next Avenue: You’ve taken a very deep dive into assisted dying in America, a world few families have experienced. As a cultural anthropologist, you’ve gone from researching birth and the beginning of life in Ethiopia to the opposite end of the life cycle. Why the shift?

Anita Hannig: I was showing a film called ‘How to Die in Oregon’ in my Medicine and Religion class at Brandeis. It’s such a lovely documentary about the law in Oregon and about all those assisted dying volunteers who go and help people die. And I was immediately hooked and thought, wow, birth and death are like bookends. You have home births and home deaths. And so I was curious to go over to the other side. I was very surprised by what I found.

You must have a unique perspective on birth and death as an anthropologist studying assisted dying and as a new mother who also lost a child during an earlier pregnancy.

Definitely. We’re so used to thinking about birth and death as opposites when they’re actually very similar. One of the main figures in my book, a former nurse and longtime assisted dying volunteer in Oregon, Derianna Mooney, taught me that birth and death are both sacred transitions — from one state of being to another, from nonbeing into being and being into nonbeing. And culturally we revere one, but we shun the other.

“I think part of the issue is that we have all the technology now, but our ethical and moral compass hasn’t really caught up with how we should use it.”

As a new mother, I can see people’s eyes light up when they watch us stroll by with our oversized pram. There’s so much positive attention. And all of this has to do with the fact that we love the beginning. It holds so much promise.

And yet we’re so afraid of the end. Similar to a birth, people do need help at the end of life. I love when Derianna says, “You’re going to the gate with them and you are letting them go, but you’re nurturing them through the gate.” What a beautiful vision.

One of the vexing issues surrounding death in our country especially is the role high-tech medicine plays in extending life — even when a longer life doesn’t always promise more quality. Is the assisted dying movement a sign that technology is frequently not making our final years better?

Yes. I think part of the issue is that we have all the technology now, but our ethical and moral compass hasn’t really caught up with how we should use it. And it’s not just in the United States. My 87-year-old grandmother, who passed away in Germany in March, underwent radiation for her breast cancer when she was two weeks away from dying. I’m flabbergasted when I think about why we offer this extremely invasive treatment to somebody who is close to dying. Thankfully, she was soon admitted to a beautiful hospice by a lake to spend what became her final days.

I got interested in this topic when a friend’s husband, suffering from Parkinson’s and no longer able to feed himself, was forced to starve himself to death since he lived in Maryland, a state without a medical aid in dying law. For people consigned to such a horrific death, can a doctor truly say they are following the Hippocratic Oath that tells physicians to do no harm?

That’s exactly the conclusion that a lot of doctors who help patients die come to because in that case doing nothing — such as not helping somebody die — is doing harm. Physicians who are at the forefront of assisted dying say their task is to prevent suffering. And how you prevent suffering in many of these cases is to help somebody die. I always come back to this question: Who is telling these patients that they need to hang on? For what? For whom? Sometimes they themselves are ready to go, but they want to stick around for the family or because there’s a societal expectation to fight.

At the beginning of your book, you almost took my breath away when you were helping one of the volunteers opening the capsules of Seconal and pouring powder into a bowl in one room while the patient, Ken, was waiting in the next room to receive the lethal medication. What were your thoughts as you prepared the medicinal mix that you knew would end a man’s life?

It’s a really good question. Anthropologists have a tool in our toolbox called “participant observation.” And that means you’re never just an impartial observer because your presence alone already changes what’s happening in the room. In order to really relate and put ourselves and the reader into the shoes of these people, you have to bring yourself into the situation wholeheartedly and authentically. And often that means becoming a participant in what is happening.

It’s an extreme privilege to be invited into that kind of intimate space. So, it would have felt very off- putting to just be sitting in the corner taking notes. Everybody in the room is carrying this person over the threshold together. And so you just kind of take your cues from what’s happening.

You don’t want to feel like a voyeur?

Exactly. You want to be in the moment and going through all the emotions other people are going through. It’s a different way of being present that allows you to faithfully experience the death alongside the people whose loved one is dying.

But this must have been a difficult moment for you. In your book, you described “a heavy sense of transgression rise up inside” of you as prepared the lethal medication.

You know what I think it is? It’s the feeling of internalizing some of the stigma that we carry and some of the taboo with which we treat death. And so being part of somebody’s death in this participatory way makes you ask, ‘Am I doing something wrong? Am I, in some bizarre way, enabling that person to die?’

But even if I hadn’t been there, things would have gone probably in a very similar way. I think it’s the cultural baggage that we feel around what it means to hasten the end of your life. Everyone there knew this is what Ken wanted. He chose this with one-hundred percent of his cognitive abilities. His wish was to be delivered from this world and you are enabling that transition.

Among the deaths you researched but didn’t witness was that of Louis, who was an outlier. His experience turned into a nightmare for the person who supervised his assisted death. Louis actually woke up after taking the lethal medication. What happened?

“Everybody in the room is carrying this person over the threshold together.”

Medicine is a human art and as an art, is prone to failure. And it just goes back to the ways the laws are written. They insist on self-administration. But when you are limited that way, you’re going to run into a bunch of problems such as people with gastrointestinal issues who can’t quite absorb the medication. And then you have people who can’t physically self-administer, like a lot of folks with ALS or other illnesses that affect their mobility or their hand range or who can’t drink something on their own or push the syringe on their feeding tube.

And people are getting a little more innovative with things like rectal catheters now, but there’s still a requirement that this has to be an act of volition — you have to be the one to push the plunger on your feeding tube or catheter, what have you. And in almost all other countries, you don’t have that requirement. A doctor can administer if you’re unable to administer yourself.

So after immersing yourself in this world of assisted dying for five years, what‘s your takeaway from this experience?

As a society, we have to make a concerted effort to become less alienated from death and dying. Of course, one could ask how alienated are we when the biggest newspaper in the country, the New York Times, can post images of corpses in Ukraine on its front page? But that doesn’t create closeness or connection. That just creates more fear.

Ideally, I think everybody should have to take a class on death and dying that could cover estates, hospice, and what life-extending procedures there are. In my death and dying class, I talk about people in South Korea who fill an entire gymnasium with coffins and the public comes in and gets inside the coffin to simulate what it would be to die. And they come out of this experience with a totally new zest for life.

This is what contemplating our mortality can do for us. It can take away some of the fear and some of the surprise when a loved one passes away because you will have thought about it in advance. I’m not saying assisted death is the way to go for everyone. We really need to pay more attention to end-of-life issues and prepare for the inevitable and have all of that be less stigmatized.

Book over of "The Day I Die" by Anita Hannig. Next Avenue, medical aid in dying

As the country’s pandemic death toll inches toward one million, has America’s attitude toward death changed at all?

Certainly it’s brought death into the lives of lots of people but not in a way to make them feel more connected to death. Many people weren’t able to see their loved ones in assisted living homes or couldn’t go to the funeral or they weren’t allowed to be present at a nursing home.

When I see the way that we’re tumbling back into life as it was before the pandemic, I don’t know that we’ve really thought critically about death. We just have this big fear-based relationship with death and it’s not lifting the curtain, really. I think people are thrilled to have escaped the pandemic. They see themselves on the other end of that mostly unscathed.

They dodged a bullet?

That’s exactly what it is. But I don’t think it’s made us really contemplate our mortality that much more.  

So what will give you a signal that something has shifted in the American attitude toward death?

That people don’t automatically associate the topic of death with fear. And when people begin to realize what I witnessed and write about in the book — some of the empowerment that can come from determining the end of your life and even some of the joy. I hope I’m not out of line to call it joy. When I think of the deaths I witnessed, they weren’t unambiguously sad. There were also serene and heartfelt moments, some laughter and families felt at ease because their loved one wanted to die and they were helping them.

And those who chose to end their lives wanted their death to resonate beyond themselves and their families. Jean, one of the people whose death I witnessed, unbelievably spent the last few minutes of her life promoting her chosen way to die. I still remember her words:

“There are all these baby boomers who will want a better way to die. Our society doesn’t recognize that yet. They will someday.”

Complete Article ↪HERE↩!

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Doctor accused of killing 14 patients with fentanyl acquitted of murder

William Husel hugs his wife, Mariah Baird, after the doctor was found not guilty on 14 counts of murder in connection with fentanyl overdose deaths of former patients on April 20 in Columbus, Ohio.

By Brittany Shammas & Timothy Bella

William Husel, an Ohio doctor who was accused of killing 14 patients with what prosecutors described as “wildly excessive” doses of fentanyl between 2015 and 2018, was acquitted on all counts of murder Wednesday, concluding one of the most significant murder cases of its kind against a health-care professional.

Husel, a onetime physician of the year trained at the Cleveland Clinic, faced one count of murder for each of the 14 critically ill patients he was accused of killing. The jury deliberated for seven days before finding him not guilty on all 14 counts in what was one of the largest murder trials in Ohio history.

He had been charged with causing or hastening their deaths amid a period of lax oversight of fentanyl at Mount Carmel West, a Catholic hospital in Columbus. Husel would have faced life in prison with just one guilty verdict.

While the synthetic opioid is significantly more powerful than morphine and has wreaked havoc on American streets, it can provide pain relief in medical settings that is crucial to end-of-life care. The alleged victims in the Ohio case suffered critical medical conditions including overdoses, cancer, strokes and internal bleeding. Prosecutors acknowledged that all were being kept alive on ventilators and that many of them were dying.

“In truth, William Husel was an innocent man, and thank goodness the justice system prevailed,” Jose Baez, one of Husel’s defense attorneys, told reporters.

The 46-year-old’s acquittal came after a two-month trial that triggered a debate on end-of-life medical care. Husel and Baez argued in the trial that the doctor offered comfort care for dying patients and was not trying to kill them. They pointed out that the doctor’s actions did not occur in secret — nurses were the ones to administer the doses — and alleged that hospital officials made Husel the villain after realizing the systemic failures at play. The fallout over the allegations at Mount Carmel West had repercussions: the firing of 23 employees; the resignation of the hospital’s chief executive, chief clinical officer and chief pharmacy officer; and Medicare and Medicaid funding for the institution was put in jeopardy.

But Franklin County prosecutors alleged that Husel gave patients amounts of the opioid far beyond the norm. He ordered 1,000 micrograms of fentanyl for multiple patients — about 10 times the recommended dosage, according to prosecutors. One of the patients, 82-year-old Melissa Penix, was given 2,000 micrograms of fentanyl — 20 vials of it, all at once. The amount of fentanyl given to her, which was about 20 times the recommended dosage, depleted the entire supply of the medication available in the ICU that night, Franklin County Assistant Prosecutor David Zeyen told jurors.

Joel Zivot, an associate professor of anesthesiology and surgery at Emory University and the sole witness called by Husel’s defense, told The Washington Post that he was relieved the jury determined that disease, not fentanyl, caused the 14 deaths.

“Physicians intend to provide comfort at the end of a person’s life, and the idea that the intent was murder simply by the action by giving someone pain control was unprecedented and ultimately shown to be a false accusation,” Zivot said.

The Franklin County Prosecutor’s Office released a statement commending the prosecution and defense for their work, adding that the office accepted the jury’s finding Husel not guilty.

“The Jury after review of all the evidence was not convinced beyond a reasonable doubt that William Husel was guilty of any charges submitted to them,” the prosecutor’s office said in a statement. “We accept the jury verdict.”

The case came to light in the fall of 2018 when, Mount Carmel West has said, pharmacists voiced concerns about doses ordered by Husel, an anesthesiologist who had been employed at the hospital about five years and worked on the skeleton crew of overnight intensive care. He was well liked in the ICU and known for his willingness to teach those who worked alongside him.

In total, at least 35 people may have been given excessive doses, the hospital said after a review. All of them died; the hospital said five might have had a chance to improve. Officials alerted police, and Husel was charged in June 2019 with 25 counts of murder. Prosecutors dropped 11 of the charges.

During closing arguments in the trial this month, Zeyen argued that even if the patients were dying and Husel thought he was acting in their best interest, killing them still constitutes as a crime.

“That is what you do to sick animals. That’s fine in veterinary science,” Zeyen said. “That is not fine in the ICU at Mount Carmel.”

Baez responded by referring to Husel’s pledging to provide comfort to the patients, noting that the doctor had much to lose.

“Why would this man risk his family, his career, 17 years of trying to be a doctor, every single thing he has worked for, to hasten someone’s death or to kill them?” Baez asked during closing arguments.

Zivot told The Post that he reviewed each of the cases and concluded that Husel offered the kind of care that any doctor would have provided for end-of-life treatment.

“Dr. Husel did the thing that doctors do in that he provided some fentanyl for the purpose of mitigating what we imagine to be the pain of dying, and that’s it,” he said. “We cannot know what it feels like to die; we can only imagine it. We fear it, and we are concerned about that. If we can’t stop someone from dying, at least we can reduce the pain associated with dying.”

When Common Pleas Court Judge Michael Holbrook read each verdict of not guilty, Husel’s wife, Mariah Baird, watched and smiled before hugging her sister, reported the Columbus Dispatch. After all 14 counts came back as not guilty, Husel wiped away tears.

Even with his acquittal in the murder trial, Husel still faces more than 10 lawsuits from the families of patients. Several of the families have settled lawsuits worth about $13.5 million, according to NBC News.

Baez emphasized to reporters that he felt “terrible for all of the patients’ families suffering again.” But, he said, he hoped they took comfort knowing that a jury concluded that it was their loved ones’ critical illnesses, and not the opioid, that resulted in their deaths.

“Hopefully they take solace that their loved ones’ last moments were in peace and not as a result of a doctor being afraid to make them comfortable,” he said

Complete Article ↪HERE↩!

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In end-of-life care, hospice can ease angst

Knowing what to expect and when to begin will benefit patient and caregiver

By Lisa Kanarek

In fall 2020, my 94-year-old father was discharged from a hospital with orders for hospice. I didn’t know what to expect. Although over three months, his appetite had diminished along with the strength in his legs, I avoided researching end-of-life care. It turns out I’m not alone.

“People stay away from discussing hospice because they feel like it means they’re giving up and can’t do anything further,” says Diana R. Kerwin, chief of geriatrics at Texas Health Dallas Presbyterian and president of Kerwin Medical Center.

Hospice services were introduced in the United States in 1974. The goal of hospice is to keep someone as comfortable as possible when they’ve decided to stop seeking further medical treatment. With hospice, a team of health-care professionals — including a physician, a nurse, a social worker and a spiritual care provider — work together to minimize patients’ pain and focus on their needs.

Unfortunately, the confusion and misconceptions surrounding hospice can keep a family from seeking the service for a loved one and cause them to suffer needlessly. Knowing what to expect and when to begin hospice can help alleviate the anxiety and uncertainty surrounding end-of-life care, experts say.

“Everyone in this country is entitled to hospice,” says Dawn Gross, attending physician of Palliative Care Service at the University of California San Francisco, and medical director of ANX Hospice.

“To be eligible,” she says, “two physicians must agree that the person has a prognosis of six months or less to live, should the illness run its natural course without intervention. That does not mean the person must die within those six months.”

In 2018, 1.55 million Medicare beneficiaries in the United States used hospice. But according to a study in the Journal of the American Geriatrics Society, each year, nearly 1 million individuals who may be eligible for hospice die without using it.

According to a 2018 study in the Journal of Pain and Symptom Management, “a significant cause of low overall hospice utilization and intractably low median lengths of stay, reflective of late admissions, can be attributed to” difficult and variable prognoses “for most of the leading causes of death among Medicare beneficiaries.”

So, when should a patient or their family talk to their physician about starting hospice care?

“You should think about hospice when your daily quality of life is significantly impaired and when the treatments are not going to change the outcome,” Kerwin says. “That includes a person’s ability to stand up and walk around, eat, feed themselves, get up and go to the bathroom, communicate, and recognize others.”

Hospice falls under the umbrella of palliative care, but some people confuse the two. Gross says hospice focuses on maximizing the patient’s quality of life using all treatments necessary to relieve the symptoms of a terminal illness, including physical (such as pain, nausea and shortness of breath), psychosocial (anxiety, depression and insomnia) and spiritual (existential suffering, which need not be connected with a religious belief). On the other hand, palliative care is designed to support quality of life at the same time a person is receiving cure-focused/disease-modifying treatments.

Gross emphasizes that hospice-care professionals do not move into a person’s home. If someone has worsening symptoms that are out of control, a licensed vocational nurse, a registered nurse or a home health aide could stay for eight-hour shifts until the patient is once again comfortable.

“The hospice benefit covers all care provided by hospice,” she says. “This includes medications that are treating symptoms as well as equipment intended to improve quality of life, such as an adjustable hospital bed, bedside table, an oxygen compressor, and all hospice team member visits.”

During my father’s time in hospice care, nurses stopped by my parents’ home twice a day and were available by phone to answer questions. But I was responsible for administering medication — morphine and a small amount of Ativan to relieve anxiety — and ensuring that my father was comfortable in between visits.

Payment options for hospice care include Medicare and Medicare Advantage, Medicaid (benefits vary by state), Tricare (which provides health benefits for active military personnel and retirees and their dependents), and CHAMPVA (Civilian Health and Medical Program of the Department of Veterans Affairs). Most private insurance obtained through employers or state exchanges also pays for hospice care.

“It’s important to know what your private insurance covers related to hospice costs,” says Amy Tucci, president and chief executive of Hospice Foundation of America. “Some policies will cover all hospice-related expenses, while others may cover much less.”

Tucci says that for those without insurance, hospice providers will often work with families and may charge on a sliding scale according to what the family can afford, or they may use charity funds if available to reduce out-of-pocket expenses.

My father, Joseph Kanarek, couldn’t wait to come home from the hospital. Without the help of hospice services, we would not have been able to provide care at home, where he was surrounded by family.

While 71 percent of patients prefer to be at home receiving hospice services, not everyone has family or friends available to tend to them, according to a 2016 survey. A nursing home, a hospital with a floor dedicated to hospice and palliative care, or a hospice facility are all options for receiving hospice care. Custodial care such as housekeeping or private caregiving, which hospice team members would not provide, is not covered by the hospice benefit.

“Before deciding on a particular agency, shop around,” says BJ Miller, a physician, co-founder of Mettle Health and co-author of “A Beginner’s Guide to the End: Practical Advice for Living Life and Facing Death.” “Hospice is a service like any business; there are different qualities. So if you live in a place where there are multiple hospice agencies available to you, interview them.”

Hospice is a two-way street; people can come and go as needed. Miller explains that sometimes people sign onto the service, feel better and are discharged from hospice. If patients do not like it and decide to try a new treatment that’s coming online, with the stroke of a pen, they can sign off legally, he says. This process is called revoking hospice care.

“It’s an administrative burden, but it’s no big deal,” he says. “Then your old insurance will kick in.”

Predicting the exact day of death can be challenging, but there are a few indications of when the end is near.

“We’ll see people have very distinct changes in the pattern of breathing,” Gross says. “They take pauses, or what is medically referred to as apnea, in their breathing. They seem to be holding their breath, leaving those at the bedside wondering whether they are going to take another breath.”

As the 2019 study in the Journal of the American Geriatrics Society found, hospice services are underused, especially among those with non-cancer illnesses. As more people learn about the benefits of hospice, they may be less hesitant to request the service.

“Hospice is not something to be afraid of,” Kerwin says. “It’s taking steps to be sure yourself and your loved one is provided comfort and compassionate care as well as support at the end of life’s journey.”

Less than four months after my father passed away, I helped my sister-in-law give her dying father morphine and other medication throughout the night. Instead of feeling anxious, as I did when I was in her role during my father’s final hours, I felt a sense of calm.

This time, I knew what to expect.

Complete Article ↪HERE↩!

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What is palliative care?

How is it different from hospice?

Palliative care tries to support a patient’s quality of life.

By

When most people hear the term palliative care, they look worried or confused. Introducing myself to patients and families as a palliative medicine physician, I commonly hear things like, “Does this mean I am dying?” or “I am not ready for hospice.”

I respond by acknowledging these common fears, but emphasizing that palliative care and hospice care are two very different things.

Hospice care is a Medicare-covered benefit for people whose doctors believe they are in the last six months of life, and who want to stop treatments targeting their disease – such as chemotherapy for cancer – to focus on comfort. In contrast, palliative care is appropriate for people at any stage of serious illness and is provided alongside treatments aimed at curing disease.

Palliative care specialists like me are experts in treating physical symptoms like pain and nausea. But just as important, we listen to patients’ stories and find out what is most important to them. We help make difficult treatment decisions and address the sadness and uncertainty that often accompany serious illness. We walk alongside patients and their families at a time that can be frightening and overwhelming, offering comfort, information, guidance and hope.

Palliative care recognizes that ethical and compassionate care for serious illness requires supporting the whole person in addition to fighting the disease.

Mounting evidence

The field of palliative care is still relatively new. In the early 1990s, research demonstrated substantial shortcomings in the quality of care for patients with serious illnesses. One 1995 study of nearly 5,000 people in the U.S. found that half of patients who died in the hospital experienced moderate to severe pain in their last days of life. More than half of the time, doctors did not know when their patients preferred to avoid CPR at the end of life.

These types of findings helped inspire the field of palliative care over the course of the 1990s and early 2000s. It began at a handful of hospitals as a specialty consult service working alongside primary teams – such as oncologists, cardiologists, surgeons and neurologists – to improve the experience of serious illness and ensure patients’ needs were met.

According to the State-by-State Report Card on Access to Palliative Care, which is compiled by researchers at the Center to Advance Palliative Care, only 7% of U.S. hospitals had a specialty palliative care service in 2001. Today, 72% of hospitals with 50 or more beds have a palliative care service, and palliative care specialists are increasingly available in other settings as well, including outpatient clinics, nursing homes and home-based programs. For example, it is now possible to see an oncologist for cancer treatment or a cardiologist for heart failure, followed by an appointment with a palliative care specialist who treats related symptoms such as fatigue and depression.

This growth is fueled in part by growing evidence of the benefits that palliative care provides for patients and families. Our research team at the University of Pittsburgh led a 2016 review of results from 43 randomized trials with nearly 13,000 patients – meaning that some patients received palliative treatment, and others did not. We found that palliative care was associated with significant improvements in patients’ quality of life and reductions in their physical symptoms one to three months afterward.

A woman in a hospital bed, in a hospital gown, smiles and pets a fluffy dog as another woman looks on.
Palliative care involves discussing what matters most to a patient’s quality of life, such as being able to care for their pets.

Importantly, palliative care was not associated with shortened survival, pushing back against a popular assumption that pursuing palliative care means “giving up” on fighting disease. In fact, one influential study found that patients with advanced lung cancer who receive specialty palliative care in addition to standard oncology care lived almost three months longer than patients who received standard oncology care only.

Palliative care is now recommended in many national guidelines as a critical component of high-quality care for serious illnesses. For example, in 2016 the American Society of Clinical Oncology recommended that all patients with advanced cancer receive dedicated palliative care services early after diagnosis, while also receiving treatment to target the disease. Increasingly, palliative care is viewed as an essential part of ethical and compassionate medical care.

Not the norm

One might suspect that an evidence-based service recommended by national guidelines would be available to everyone with serious illness. When it comes to palliative care, however, this is not the case.

Nationally, palliative care teams are vastly understaffed. Workforce shortages are projected to worsen in the future, as the U.S. population ages and therapeutic advances mean people can live longer with serious illness. Even now, with COVID-19 surges having caused as many as 154,000 new hospitalizations weekly and made other patients sicker because of pandemic-related delays in care, palliative teams are stretched to the limit.

Whether you or a loved one has access to palliative care may also depend on where you live and where you receive your medical care. According to the State-by-State Report Card, a hospital in New Hampshire is three times more likely to have a palliative care service than a hospital in Mississippi. Another recent analysis found that a not-for-profit hospital is two times more likely to have a palliative care service than a for-profit hospital.

A 2019 study found that palliative care consults were less frequent at hospitals that serve the largest proportions of Black and Hispanic patients. These structural inequities risk worsening known disparities in the care of serious illness.

Educating doctors

Patients and families can request palliative care, but palliative care specialists usually are brought in once the primary clinical team recommends it. Yet many physicians do not, either because they mistakenly equate palliative care with hospice or do not recognize the value that palliative care can bring.

One approach to expanding palliative care access is to enhance palliative training and support for every clinician who cares for patients with serious illness – an approach sometimes called “primary” palliative care. Another approach is to leverage newer care-delivery models, such as telemedicine, to expand the reach of palliative care specialists.

These solutions would require changing medical reimbursement and training models to make palliative care fundamental – for everyone.

Complete Article ↪HERE↩!

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Death, Dying and Suffering

— The Need for Medical Education Reform

by and

As she closed the door behind her, the palliative care geriatrician whom I (Meghan) was shadowing turned and said, “Remember, there are no difficult patients – just difficult situations.” We walked to our next patient, Mrs. C, who was suffering from congestive heart failure. All cures had been exhausted and she was tired of being at the hospital but was scared to enter hospice care. The doctor clasped hands with Mrs. C and explained that starting hospice did not mean giving up — it meant living life on her own terms in the time that was left. After these discussions, Mrs. C appeared more at ease and decided to pursue hospice care at her home.

During this and other palliative care consults, I saw how terminal illness could raise tough questions with patients, families and their providers. However, I also saw that working through these discussions could minimize suffering, give patients a sense of hope and allow them to make the most of their time remaining. Unfortunately, most medical students and doctors report feeling ill-equipped to have conversations about end-of-life care with patients. In this article, we will examine a provider’s role in validating the illness experience and describe how formal medical training on death, dying and suffering can equip physicians to provide better patient care.

According to medical humanist and physician, Eric Cassel, suffering can be defined as a state of distress that occurs when a person’s “intactness … as a complex social and psychological entity” is threatened. Suffering can occur when pain is uncontrollable, chronic or when its source is unknown. Patients may suffer and feel helpless when experiencing such pain due to a lack of perceived control or knowledge of how to relieve it. However, physical pain is just one aspect; there are also psychological, existential and social dimensions that can exacerbate suffering. I (Leonard) lived through this complex experience of suffering secondary to a debilitating illness when I was 19. I had an unusual Clostridioides difficile (C. diff) infection lasting several weeks which was so severe that it caused me to lose 15 pounds. During this period, I felt the uncertainty, vulnerability and alienation associated with being sick. Because it was so rare for a healthy, immunocompetent individual like myself to contract C. diff, it took a week and a half before my doctors were able to diagnose the medical origin of my suffering. To make matters worse, I felt that the doctors cared more about my atypical case of C. diff than about me as a human. Being solely viewed as an “interesting presentation of disease” invalidated my experience and caused me to suffer beyond the pathogenesis of the bacterial infection.

Physicians must work with their patients to identify the underlying and often complex sources of distress. Once a culprit has been identified, a physician can help the patient manage the aspects of distress which they can control, reframe their perceptions and interpretations of the aspects that they can’t control, and ultimately, reassure them that the distress will eventually end. In essence, physicians can empower patients to take control over their distress, thus reducing their suffering.

Regardless of their chosen medical specialty, physicians will inevitably confront death, dying and suffering during their education, training and career. However, due to the curricular gaps in our current medical education system, future physicians are underprepared to hold such conversations with their patients. Indeed, one survey of medical students at two prominent medical schools reported that students received “little or no explicit educational attention to the suffering of patients and their families” or for the clinical management of suffering. Instead, the students learned these clinical skills primarily by ad hoc observation of role models. While ad hoc observation can be a powerful learning method, it could be much more effective when used in tandem with more formal instruction. Not only does this unpreparedness result in suboptimal care, but it may even harm patients, who can suffer more from not feeling heard, validated or supported when discussing their illness with providers.

Medical school curricula should be formalized to teach students how to face suffering and death in clinical practice. We advocate for a longitudinal educational approach: first, incorporating curricula on suffering and death in didactic pre-clinical education will afford students the opportunity to learn foundational concepts, such as how to address suffering and openly discuss death, in a safe space. Secondly, to maximize student learning in the pre-clinical years, lived experience panels and group discussions following the panels may also prove useful; composed of people who have direct, firsthand experience with a particular topic, lived experience panels offer a personal lens through which to view the issue. For suffering and death education, lived experience panels may include patients with terminal illnesses (and their families), palliative care specialists and people living with chronic diseases.

At the University of Texas Medical Branch, we attended such panels during one of our first-year medical courses and found them to be profoundly insightful. These panels deepened our understanding of what patients and families had experienced and demonstrated how providers could better acknowledge and support patients’ needs. Early exposure to formalized curricula on suffering and death through lived experience panels will encourage budding physicians to inquire about their patients’ values throughout all stages of their lives.

Patients deserve to live their lives with dignity. From our experiences, we understand that suffering may interfere with this and cause patients to lose hope. Medical education must address death and suffering early so that such conversations are normalized amongst medical students by the time that they reach the clinical years. By incorporating more instruction on how to acknowledge distress and suffering in medical school curriculum and by learning directly from patients and families, future physicians will be able to work with patients to find the best balance between quantity and quality of life.

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Terminally ill patients the first in B.C. to consume legal supply of magic mushrooms

“Having this approval, I feel like the luckiest person. I know a number of people with cancer who have died waiting for one.” — Thomas Hartle

Saskatchewan’s Thomas Hartle, 54, is one of five terminal cancer patients who will begin psychedelic therapy on Sunday, April 3, 2022, in Nanaimo. Hartle will use psilocybin to help cope with the anxiety surrounding his diagnosis.

By Sarah Grochowski

Five terminal cancer patients have been granted Canada’s first legal, domestic supply of magic mushrooms to treat their end-of-life anxiety.

One of them, 54-year-old Thomas Hartle, arrived at Nanaimo airport Saturday morning from his home in Saskatoon to participate in psychedelic therapy using psilocybin, the active ingredient in magic mushrooms, which he hasn’t been able to legally do since August, when his one one-year exemption from the Controlled Drugs and Substances Act expired.

By that time, his Stage 4 colon cancer had returned.

“Having this approval, I feel like the luckiest person. I know a number of people with cancer who have died waiting for one,” said Hartle, a father of two girls, who will undergo psychedelic therapy by palliative care physicians with Nanaimo-based health care organization Roots To Thrive.

“I really didn’t think I was going to make it this long,” he said.

In January, Health Canada restored the ability of doctors to request access to psilocybin after excluding the non-market prescription from its Special Access Program (SAP). Now terminally-ill patients can access the drug if it is administered in a clinical setting.

Roots To Thrive doctors had their SAP requests for the patients approved last week and plan to distribute prescriptions from Calgary’s Psygen Labs to the group Sunday as individuals of the group set their intentions for their trip.

Saskatchewan’s Thomas Hartle, 54, is one of five terminal cancer patients who will begin psychedelic therapy on Sunday, April 3, 2022, in Nanaimo. Hartle will use psilocybin to help cope with the anxiety surrounding his diagnosis.
Saskatchewan’s Thomas Hartle, 54, is one of five terminal cancer patients who will begin psychedelic therapy on Sunday, April 3, 2022, in Nanaimo. Hartle will use psilocybin to help cope with the anxiety surrounding his diagnosis.

Hartle, who first underwent the treatment in Saskatchewan by ingesting magic mushrooms he grew himself, has a goal of coming to terms with dying.

“When you get a terminal cancer diagnosis, it instils a sense of panic in you, you can’t sleep. I was consumed with terror about who will be there for my daughters when I die. Worry took away my ability to function and live,” he said.

“Magic mushrooms allowed me to calm the worries in my head, allowing my body to use my energy for healing instead and process those fears in a supportive environment. The positive effects last six months.”Hartle’s main concern is that others battling terminal diagnoses will not be able to access a legal supply of psilocybin as easily.“When Health Canada first announced that doctors could request psilocybin they said the special access requests will have a quicker response rate, a matter of days for emergencies. However, it took three months for my doctors to get approval.”

As of Friday, Health Canada said it had received a total of 14 SAP applications for psilocybin — of those, six have been authorized, four are under review and four were withdrawn by the physician before a decision was rendered.

“Requests to the SAP involving new products or new indications typically take longer to process because verifications must take place with the manufacturer regarding product quality and their ability and willingness to provide the drug,” the agency said in an email.“However, once access to a specific product has been authorized by the SAP, ensuing requests for the same drug can be processed much more quickly.”Previous to the SAP allowance, patients were only able to access psilocybin-assisted psychotherapy through clinical trials or Sec. 56 exemptions.

“It took me 103 days to get my first exemption,” Hartle said. “Now, more than 200 days later, I’m still waiting to hear back about my renewal application.”

Spencer Hawkswell, CEO of TheraPsil, a Victoria group that helps Canadians get access to psychedelic therapy, said British Columbians approved for exemptions have been forced to source the drug by growing their own or purchasing it from an unlicensed dispensary.“Patients do not know what is inside the substances they are having to purchase. It’s not as safe as it should be,” Hawkswell said.Hartle, who plans to fly home Wednesday for his 70th round of chemotherapy, said time is of the essence for the terminally ill.

“It hurts my soul to know that so many people may not be getting the help they need as soon as they need it.”

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For end-stage dementia, Medicare can make hospice harder to access

The number of elderly Americans with the disease is projected to double by 2060. Many will need hospice care but the program will need reform to aid them, experts say

By Emily Harris

Janet Drey knows how hard it is to predict the future, especially the future of someone who lives with dementia. In 2009, a neurologist diagnosed her mother, Jean Bishop, then age 79, with frontotemporal dementia, a disorder that irreversibly damages the front and sides of the brain.

When Jean could no longer walk, speak or feed herself a year later, doctors confirmed that she had less than six months to live, Drey recalls. The prognosis fit Medicare’s definition of being terminally ill. That prognosis qualified her for hospice care, an interdisciplinary approach that prioritizes comfort and quality of life in a person’s final months.

The streamlined access to doctors, nurses, social workers and medications covered by Medicare, quickly became essential to Jean and her husband, and made it possible for them to continue living together on their 40-acre farm in rural Iowa.

But as can be the case with dementia, Jean’s decline was less precipitous than expected. When she was alive after six months, her physicians took another look at her condition. It seemed to be deteriorating, so they recertified her for hospice.

After several more months of care, Jean’s condition stabilized. She was still living with a progressive disorder, but Medicare’s coverage of her hospice costs was stopped because her eligibility for it was tied to her condition worsening.

Without it, Jean’s husband, Leonard Bishop, in his mid-70s at the time, was on his own most days to care for her: lifting her out of bed and placing her before her favorite south-facing window, helping her bathe and eat, and managing her pressure sores.

Inevitably, Jean’s dementia worsened. When Leonard found Jean unresponsive one morning in 2011, doctors deemed again that she had less than six months to live. She was re-enrolled. This cycle in and out of hospice occurred three times over three years.

Exhausted, Jean’s husband almost didn’t enroll her the third time, asking Drey and her siblings, “Well, if they’re just going to discharge us again, should I even do this?” Jean died almost exactly six months after her third admission.

Jean’s experience isn’t an outlier.

Based on a recent study, Medicare’s hospice regulations are not working as intended for many people with dementia, says Elizabeth Luth, a sociologist at Rutgers University who studies end-of-life care. According to her study of 3,837 hospice patients with dementia, about 5 percent are pulled from hospice when their condition seems to have stabilized.

Plus, the number of Americans over 65 with dementia is projected to more than double to 13.8 million by 2060. Many will need hospice care. “It’s worth asking the question, ‘Should we reevaluate?’ ” Luth says.

The Centers for Medicare and Medicaid Services (CMS) has been introducing new payment structures, pilot programs and quality metrics to address weaknesses in the hospice admission criteria. None of their solutions, however, have modified the six-month benchmark — that would require a change in law, according to a CMS spokesperson. With no amendment to the six-month rule in sight, hospice and palliative care workers are pushing for a different end-of-life model for people with dementia.

Congress created Medicare’s hospice benefit in 1982 to provide dying patients with medical, social and psychological support. To keep costs of the new benefit down, it capped the definition of terminal illness at six months to live to balance money spent on hospice care with expenses saved from avoiding costlier hospitalizations that often occur at the end of life.

For a couple decades, the six-month benchmark worked. Most early hospice patients — over 75 percent in 1992 — had cancer. Doctors can predict with relative accuracy when a patient with advanced cancer has less than six months to live.

Today, the average hospice patient is very different. About half have dementia, according to a study published last year. And as Jean’s family experienced, predicting when a patient with dementia has only six months to live is difficult.

“Dementia clearly does not fit the disease trajectory of 70s cancer patients,” says Joan Teno, a health services researcher and former hospice medical director

Theoretically, up-and-down declines and incorrect prognoses shouldn’t be a problem. Doctors can recertify hospice patients who are alive after six months as still terminally ill, as Jean’s physicians did during her first hospice stay, and Medicare will continue to reimburse for that extra time.

But reality can be more complicated, says Krista Harrison, a health services researcher at the University of California at San Francisco. Hospice programs with too many patients receiving care for more than six months raise some flags for Medicare, and are sometimes audited as a result — an expensive, time-intensive process. If an audit uncovers seemingly inappropriate use of the benefit, the hospice might have to repay money that Medicare reimbursed, which can run up to millions of dollars.

Sometimes, people with dementia can stabilize while they are receiving hospice services, as Jean did. “For those people living at home, there’s not really any other services out there that provide the same level of support,” says Lauren Hunt, a former nurse practitioner who now researches end-of-life care at UCSF.

So when patients enroll, they may finally have the care they needed all along and their condition can get a little better or at least stabilize. This can then make them ineligible for Medicare support going forward.

In the end, Medicare’s penalties leave clinicians and hospice organizations in what Harrison calls “an impossible moral quandary,” with the needs of their patients with dementia on one side and Medicare’s six-month regulations on the other.

“We need to update the payment models, and especially hospice, to really reflect this changing disease trajectory of an aging society,” Teno says. “What I’d rather see is some flexibility.”

CMS began to update its payment models in 2016 after years of warnings from Medicare’s advisory body that some hospice organizations were using the benefit for financial as much as for care reasons.

The payment reform has Medicare reimburse more (about $200 for routine care) for the first 60 days a person is enrolled in hospice and about $160 after that, until care again intensifies at the end of life. That scheme aligns better with hospice’s U-shaped pattern of costs. Before that, when Medicare paid a flat rate, it was easier for financially driven organizations to enroll patients with unpredictable declines too early and make extra money during their lengthy middle periods.

Another new model started on the first day of 2021. It’s one that applies to people enrolled in Medicare Advantage, the insurance people over 65 can opt for instead of Medicare. This pilot program is meant to smooth fragmentation in hospice care, previously covered only by Medicare, for the roughly 40 percent of older Americans with Medicare Advantage.

Beginning this year, Medicare also introduced a quality metric that tracks the number of people unenrolled from hospice, giving CMS another way to keep tabs on organizations with too many people unenrolling from hospice.

Without a change in the six-month rule, however, many end-of-life care experts say Medicare should come up with a new rule to provide palliative care for people with dementia that focuses on pain and other quality-of-life issues, and that is tailored to the person’s needs earlier in their illness. More intensive hospice services would be added later.

“What makes sense is to have a different type of program that allows for a larger prognostic window, but that would also reimburse less than hospice does,” says Claire Ankuda, a palliative care physician and researcher at Mount Sinai.

Jean Bishop’s family agrees with that.

Several months into 2013, she had qualified again for hospice, her third go-round. A week before Christmas, the 83-year-old mother of 10 died, surrounded by her husband and children, four years after she had been diagnosed with dementia.

Because Jean’s disease unfolded slowly, it would have been helpful for her and her husband to have had consistent support from the start that eased into hospice care, Drey says.

Instead, Jean and her family weathered abrupt gaps at an already vulnerable time. For Jean’s husband, Leonard, one of the most devastating parts was the questions that would go unanswered between enrollments without the advice and help of hospice specialists: What the end would look like, and whether he would know what to do for Jean — and be able to do it.

“He had to work out in his head a scenario so that if something happened and it was a crisis, he knew how he would act,” Drey says.

During the periods that Jean was ineligible for hospice, he knew he would have to handle those crises alone.

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