‘Death Doulas’ Help Patients With Cancer Face Their End of Life With Courage and Meaning

Dying does not have the be scary, and there are resources available to help patients and their loved ones, explained an expert.


Better care is needed for patients with late-stage cancer who may be facing the end of their life, and death doulas — also referred to as “soul doulas” or “end-of-life doulas” — may provide a resource that help patients and their family members cope with this difficult stage, according to Lorraine Holtslander.

“A death doula has education and expertise to support persons and families facing serious illnesses, including through death and grief,” Holtslander, a professor at the University of Saskatchewan College of Nursing in Canada, said in an interview with CURE®. “The doula provides support to access needed resources, make the best decisions and planning and preparing ahead for critical illness.”

Death doulas can help “fill the gaps” between the clinical and personal side of care, explained Holtslander, as they aid patients and families in navigating the health care system while also ensuring that important aspects such as their culture, gender and sexuality are honored through the end of their life. They may also offer services such as aromatherapy and music therapy.

“More people are wanting to take control over how they manage life-threatening illnesses, be supported to do their own future planning and move away from a strictly medical approach to death and dying, toward a more natural end of life,” she said.

Holtslander noted that death doulas are just one aspect of often-underutilized end-of-life-care resources that may be available for patients and their families. She mentioned that palliative care is always appropriate for patients with serious illnesses like cancer and ensuring that patients’ wishes are met starts with a conversation.

“It is so important to know what are the values, wishes and beliefs of the person facing serious illness or end of life so that the best decisions will be made,” Holtslander said. “We all face end-of-life at some point. Let’s make it the best experience, filled with courage and meaning, as there are many choices and options to bring comfort to the person and family.”

Options for patients with late-stage cancer may include palliative care, which focuses on symptom management and psychosocial wellbeing and hospice, which is care for the end of life.

“Patients with advanced cancer should access palliative and hospice care sooner, rather than later, in the process, which research shows will increase both the quality and quantity of their days and time,” Holtslander said. “If a patient is wanting to die at home, supports can be in place, such as the palliative care team, hospice resources and information, and doulas to support family caregivers.”

Death doulas not only help the patient through the end of their life, but also support loved ones through the grieving process after the patient with cancer dies. These professionals may be utilized at any time throughout the process, from completing the advanced-care plan up until and after death.

“Death doesn’t need to be scary of painful; it can be a very beautiful, truly spiritual experience,” Holtslander said.

However, more needs to be done for patients with late-stage cancer facing the end of their life, according to Holtslander.

“We can do better for people with advanced cancer, providing them with the best options, individualized plans of care, and more control over what is happening to them,” she concluded.

Complete Article HERE!

Coming to terms with a patient death

By Ben Pilkington

Death, of course, is a part of life for everybody. And for doctors, death comes with the territory of being a healer. Despite enduring more exposure to death than most, physicians still experience strong and lasting emotional reactions to it, including intense feelings about their own professional responsibility and competence.

COVID-19 brought this burden on doctors and other healthcare workers into sharp focus. Healthcare workers are dealing with mass mortality at a time when patients need more help than ever, but fewer resources are available to treat them.

This article examines how patients’ deaths affect their physicians, and how deaths from once-in-a-generation catastrophes like COVID-19 have complicated these encounters. We look at the stigma surrounding doctors and their emotions, and how such attitudes jeopardize healthy coping. Finally, we explore strategies that doctors can use to deal with patient death.

How do patient deaths affect physicians?

Even the most experienced physicians can have difficulty coping when a patient dies. Despite this—and despite the fact that physicians are confronted with death more than the average person—there is scant research examining how exposure to death affects them.

Available literature suggests that more exposure to patient death is strongly linked with more work-related stress, according to an article published in BMC Medical Education. Stress caused by the death of a patient at work can lead to burnout, which data suggests affects nearly half of all doctors treating terminally ill patients. To make matters worse, a high level of stress negatively impacts the quality of patient care, note the authors of a study published in BMJ Supportive and Palliative Care.

Sometimes, doctors feel the effects of a patient’s death long after it occurs. Feelings of numbness, guilt, and stress after a patient dies are common in the short term, but when surveyed, 61% of physicians reported that the most memorable patient death they witnessed continued to be a source of emotional distress for them in the long term, noted the BMC authors.

Patient deaths in the emergency department (ED) can be especially tough for doctors to deal with. There is typically no established patient-doctor relationship and death can occur suddenly, even in young and otherwise healthy patients, leading to more distress and emotional trauma for the healthcare workers tasked with preventing death from occurring, the authors added.

This takes its toll. According to a survey cited in the BMC article, 28% of ED doctors have considered quitting and 32% have thought about changing professions.

COVID-19 made it harder to cope with patient deaths

Dealing with medical emergencies means ED doctors are typically exposed to more sudden deaths than other physicians. But with the outbreak of COVID-19, doctors were confronted with unprecedented levels of patient death alongside increased demand for healthcare services, fewer resources per patient, and less time to do their jobs.

Together, these stressors are sometimes referred to as “cumulative grief,” a phenomenon that data from the US Department of Health and Human Services (HSS) suggests negatively impacts physicians’ health and the care they provide.

“Under normal circumstances, healthcare workers have more time to grieve and manage stress following the death of a patient. With increased deaths, the behavioral health impact of grief and the risk of burnout increase. This can result in compassion fatigue, low morale, exhaustion, burnout, and errors that could harm patient care,” according to the HHS report. You can read more about compassion fatigue and burnout here.

Systemic attitudes toward physician grief

Physicians recognize the need to help a patient’s bereaved family members and friends cope with death—breaking bad news is part of the job. But there is no standard advice for physicians who need that same support.

Traditional medical culture hasn’t looked kindly upon doctors’ emotional responses to death, notes psychologist, speaker, and author Elaine Kasket of London Metropolitan University, in a blogpost with BoardVitals.

“It is socially ingrained through medical school, and the cultures in both the UK and US medical establishments see a physician’s emotional response to death as a sign of weakness and even incompetence,” she said. “It feeds into this popular image of the physician as some kind of superhuman ultimate rescuer of human life; unable to do his or her job if they give in to or even acknowledge their emotions.”

Confronting this issue requires a fundamental change in the medical community’s perspective and policy. “There needs to be a sea change in medical culture to make support available,” she said, “and for it not to be stigmatized, to help physicians cope with grief, depression, despair or sadness.”

Strategies for coping with patient death

Out of necessity, and often in the place of a glaring absence of strategies in their training, physicians often develop their own ways of coping with their patients’ deaths. Sometimes, these coping mechanisms are unhealthy, such as when a doctor dons a morbid sense of humor (although some researchers maintain humor is healthy), tries to become numb to death, or externalizes the problem, as with alcohol abuse or overeating, according to the BoardVitals blogpost. Click here to read more about the drinking habits of doctors and the pandemic.

According to an article published in the Journal of Graduate Medical Education, oncologists at Memorial Sloan Kettering Cancer Center in NYC responded to the dearth of resources for physicians coping with death by introducing their own method, known as “Patient Death Debriefing Sessions.” Introducing these short sessions gave resident oncologists and other members of the treatment team a practical way to address their emotional needs after a patient died.

Patient death debriefing sessions were less than 10 minutes long, held within 24 to 28 hours of the death, consistently held after each patient death, and led by the attending physician. The sessions focused on residents’ emotional reactions to patient deaths, guided by a pocket card tool.

Memorial Sloan Kettering residents reported finding these sessions to be helpful and educational.

There is no shortage of techniques available—including yoga, mindfulness, exercise, and healthy hobbies—to help physicians relieve some of the stress and personal grief they feel when a patient dies. Read about some of those techniques here. And, of course, any physician needing support can lean on family members and friends, reach out to a counselor, and/or find a grief support group.

Just as important, however, is that doctors must give themselves permission to grieve—and society and the medical establishment can help take pressure off physicians by realizing they may need to grieve in the face of death, like any other human being.

Complete Article HERE!

We all deserve a good death

– especially people living with dementia

On International Nurses Day (May 12), I commend the contribution made by all nurses involved in the care of people living with dementia in residential, home and community care, in hospitals and through clinics and health centres.

By Maree McCabe

Dementia is a terminal illness and appropriate palliative care is an essential element of quality care and end of life care for people with dementia, and for their families and carers.

People living with dementia, their families and carers deserve specialist dementia support to plan for and manage their end of life with dementia.

While people living with dementia will unlikely to be able to communicate clearly at their end of life and we may never know how much they can hear, see, feel and comprehend at that time, we need to support them and include them in decisions about their care through the continuum of the disease right through to end of life.

People with dementia share with us they need to have confidence in the system and the people involved in their care because they know they may not have capacity at the end of life to express their wishes. They rely on their families, support networks and healthcare professionals to ensure they receive quality dementia care and experience a good death.

Caring for someone with dementia can be rewarding and emotionally, physically and financially challenging. Families and carers frequently report feeling stressed and confused as to how and where to access end of life care and services, and can feel pressured to make immediate decisions for their loved ones.

Dementia Australia is calling on all sides of politics to commit to a national dementia palliative care program modelled on an evidence-based, nurse-led model of palliative care already successful in South Australia.

The Nightingale Program is the leading specialist dementia palliative care program in Australia and with the support of a federal funding commitment could be expanded across the country.

I acknowledge the support of existing funders, The Rosemary Foundation for Memory Support and Country SA Primary Health Network Ageing Well in Place initiative.

The Nightingale Program clients have access to specialist nurses who provide palliative care strategies and advice to support those living with dementia and their families and care providers. There is a focus on promoting choice and well-being.

The specialist dementia nurses are trained to deliver a person-centred approach to enable people living with dementia to:

  • Stay at home longer and maximise their independence
  • Promote quality of life and positive relationships
  • Have a voice in their future care options and decision making
  • Avoid unnecessary presentations to acute hospital settings
  • Access clinical advice, including co-morbidity management, pain management, delirium and palliation.

The many benefits of the Nightingale Program include:

  • Specialist nursing advice
  • Comprehensive and holistic nursing assessment, which will identify current issues and anticipate changing needs
  • Referral to other service providers as needed
  • Continuity of care, offering a single point of contact for guidance
  • Advice provided in home, residential aged care, community and hospital settings
  • Consultation in the development of advance care directives for future health care needs
  • Education and emotional support to support family and carers
  • Interdisciplinary teamwork throughout the health and care networks.

I call on all sides of politics to commit to expanding this program nationally to ensure all Australians living with dementia are supported by staff trained and qualified to provide dementia-specific palliative care.

Improving palliative care for people with dementia, no matter where they live, must be a policy priority Australia-wide to provide peace of mind for the almost half a million Australians living with dementia and the 1.6 million people involved in their care.

Complete Article HERE!

Home-Based Palliative Care Can Improve Quality of Life

Relieving a patient’s symptoms and providing support to caregivers is the goal. It’s a beneficial program, but cost is a factor.

By Lola Butcher

Cleve Hart of Pollock Pines, California was about to be discharged from the hospital when a social worker suggested that he might benefit from home-based palliative care. At the time, he and his wife, Toni, were unfamiliar with palliative care — an array of supportive services for people with serious illnesses — but they have benefitted greatly from those services for the past three years.

Cleve has been diagnosed with dementia, kidney problems and cancer. A nurse comes to their home once a month to check his vital signs.

“And she makes suggestions — like, if he’s not eating well, she suggests things that maybe would increase his appetite,” Toni says. “They just try to make him as comfortable as possible.”

Meanwhile, Magen Fregoso, a social worker at Snowline Supportive Care in nearby Sacramento, California, has directed the Harts to various resources for financial and other support — for example, a place to get adult diapers at no cost — that make their lives easier.

“They might sound like little things, but they’re big things to us, you know?” Toni says.

“I have called many times in the evening and late at night when he’s had issues like a fall or being in pain.”

For her, just knowing that the palliative care team is available for immediate advice is a huge comfort.

“I have called many times in the evening and late at night when he’s had issues like a fall or being in pain,” Toni says. “And they right away tell me, ‘Yes, you should take him to the hospital,’ or ‘No, give it a couple hours and see how it goes.’ They just counsel with us and that’s a great relief for me to know what to do.”

That’s the goal of home-based palliative care, said Susan Enguídanos, associate professor of gerontology at the Leonard Davis School of Gerontology at the University of Southern California. By relieving a patient’s symptoms — pain, shortness of breath, constipation, anxiety and others — and supporting their needs, whether that’s meal preparation or grooming or emergency advice, the home-based team makes life better.

Over the past two decades, her research has documented that patients who receive home-based palliative care services have fewer emergency department visits, hospital inpatient days, skilled nursing stays and physician visits than similar patients who do not receive that extra support.

The total cost of their medical care, including the palliative care services, is significantly less; patients report greater satisfaction with their care; and they are more likely to die at home, as per their wishes, than patients in a comparison group.

Nonetheless, home-based palliative care is still not available for most U.S. patients. In an interview with Next Avenue, Enguídanos explained why.

Next Avenue: What is home-based palliative care?

Susan Enguídanos: The vast majority of palliative care is provided in the hospital. That typically happens when a patient has a very serious condition and needs help deciding what kind of care they want or help with pain management. They would only have access to that palliative care team until they are discharged from the hospital. At that point, if they’re lucky, they might be referred to an outpatient palliative care clinic.

Home-based palliative care is really the only place for continued access to palliative care unless you have enrolled in hospice because your doctor believes you are in the last six months of life.

What is the difference between hospice and home-based palliative care?

Both hospice and home-based palliative care provide symptom management, psychosocial support, pain control, education and caregiver support to meet a patient’s medical, social and spiritual needs.

But they are completely different in this way: Hospice is for people who are actively dying and who do not want to pursue aggressive treatment for their medical problems. Home-based palliative care is for people struggling with a serious illness but who are not actively dying and, in fact, may be undergoing treatment with the goal of recovery.

So every seriously ill person is eligible for home-based palliative care?

Unfortunately, that’s not the case. The biggest problem is that Medicare does not pay for home-based palliative care. Because there is no consistent funding, there is no standardization as to what these programs look like or who can receive services.

“The first thing is to check with your insurance company. Just say: ‘I am interested in home-based palliative care and can you help me?'”

California is one of the best states in providing home-based palliative care. The big Kaiser Permanente health system here serves a huge number of patients through its program. They know the evidence shows that it is good for patients and it’s also good for their bottom line.

Outside of that, things are a little iffy, even in California. Blue Shield of California (one of the biggest private insurers in the state) started paying for home-based palliative care about four years ago. Individuals covered by a Medicaid managed care plan can access the services, and some commercial insurers or medical groups may offer it, but each program looks a little different.

Home-based palliative care is also available in other states, of course, but there’s a lot of variation depending on who is providing the services and who is paying for it.

How can a patient or caregiver find out if home-based palliative care is available?

The first thing is to check with your insurance company. Just say: “I am interested in home-based palliative care and can you help me?” The second thing is to ask your doctor. But you should be aware that some physicians have no idea what palliative care is, let alone home-based palliative care. So they might not know how to refer a patient to a program.

If those two steps don’t lead to anything, look online to see if there are local providers of home-based palliative care in your community. Here in California, some programs have a cash-pay option for people whose insurance does not cover home-based palliative care. And there are some agencies that have a charity aspect that supports some patients.

Complete Article HERE!

For Terminal Patients, the Barrier to Aid in Dying Can Be a State Line

Complex restrictions are preventing patients from accessing medical aid in dying, even in states where it is allowed. New legal and legislative efforts are pushing to change that.

Dr. Nicholas Gideonse, a hospice medical director and doctor at Oregon Health & Science University.

By Paula Span

Five years ago, Dr. Nicholas Gideonse spoke with an older man who had received a terminal cancer diagnosis and was hoping to use Oregon’s medical aid-in-dying law.

Oregon’s Death With Dignity Act, in effect since 1997, permits doctors, after a complex process of requests and waiting periods, to prescribe lethal medication for dying patients to self-ingest.

The nonprofit group End of Life Choices Oregon had referred the man to Dr. Gideonse, a primary care doctor at Oregon Health & Science University and a hospice medical director, who had already helped many patients use the law.

But this time he could not. “I’m really sorry,” he told the man on the phone. “I’m not going to be able to help you with this.” Oregon’s law — and all the laws that permit medical aid in dying in 10 states and in Washington, D.C. — has residency requirements. This man would have qualified — except for that fact he lived in nearby Washington State.

The patient’s response, Dr. Gideonse recalled, was “stunned silence, deep disappointment.” A number of Dr. Gideonse’s primary care patients drive 20 to 30 minutes across the Washington border to his office in Portland. There, he can offer them any medical service he is qualified to provide — except that one — without proof of residency. And although Washington has its own aid-in-dying law, its southwestern region has few providers who can help patients use it.

Last month Dr. Gideonse, backed by pro bono lawyers and Compassion & Choices, an advocacy group for expanding end-of-life options, filed a federal lawsuit claiming that the residency requirement for Oregon’s aid-in-dying law is unconstitutional. “I realized how important this could be for patients seeking access,” he said.

The lawsuit is one of several legal and legislative efforts around the country to reduce the requirements that patients must contend with in order to receive aid in dying. In some states, lawmakers have already broadened the types of health care providers that can participate, or have shortened waiting periods or allowed waivers.

“I think of it as MAID 2.0,” said Thaddeus Pope, an end-of-life bioethicist at Mitchell Hamline School of Law who tracks such actions, referring to the acronym for medical aid in dying. “We found out there’s an access problem.” He added, “We set all these safeguards and eligibility requirements and they locked a lot of people out.”

Oregon led the shift in easing access, amending its law in 2019. The state previously required patients to make two verbal requests for life-ending medication, at least 15 days apart, to ensure that they had not changed their minds. Now, if the patient is unlikely to survive that long, their doctor can waive the 15-day waiting period.

“Fifteen days is everything when you are suffering,” said Kim Callinan, the president and chief executive of Compassion & Choices, which supported the change. “People who are eligible for the law are hitting roadblocks and barriers.”

In 2016, for example, Youssef Cohen, a political scientist at New York University, took the extraordinary step of moving across the country to use the Oregon law as he was dying of mesothelioma at 68. “He wanted the option to determine the end of his life,” said his wife, Lindsay Wright, who is an associate dean at the university.

To establish residency, the couple had to hurriedly sign an apartment lease, obtain an ID from the state motor vehicle agency, transfer medical records and arrange an immediate appointment with a Portland doctor to qualify for medical aid in dying. Dr. Cohen then faced the 15-day waiting period.

“He didn’t make it,” Dr. Wright said. “He died six days after we arrived. And he suffered.”

A 2018 study from the Kaiser Permanente health system in Southern California showed that about one-third of qualifying patients died before they could complete the process.

New Mexico, which in June became the most recent state to legalize medical aid in dying, has adopted a markedly less restrictive approach than other states. The largely rural state is the first to allow not only doctors but advanced practice registered nurses and physician assistants to help determine eligibility and write prescriptions for lethal medication. “In some communities, they’re the only providers,” said Representative Deborah Armstrong, a Democrat and the bill’s primary sponsor.

Although a doctor must also affirm that a patient is terminally ill, New Mexico patients can skip that step if they have already enrolled in hospice, as most do. The patient need only make one written request, rather than two or more requests, as other states require. A 48-hour waiting period between when the prescription is written and when it is filled can be waived. “People walk up and tell me how thankful they are to have this option if they need it,” Ms. Armstrong said.

California has simplified its 2016 law as well. In October, Gov. Gavin Newsom signed legislation that, starting in January, reduces the 15-day wait between verbal requests to 48 hours and eliminates the requirement for a third written “attestation.”

Similar bills died during the most recent legislative sessions in Hawaii, Washington and Vermont, but will be reintroduced, Ms. Callinan said. And in many states — including Delaware, Indiana, North Carolina, Virginia, Pennsylvania and Arizona — new aid-in-dying bills, if passed, will ease requirements for patients or expand the kinds of providers who may participate.

On the legal front, the Oregon lawsuit filed by Dr. Gideonse argues that residency requirements for aid in dying violate two sections of the U.S. Constitution, one barring state laws that limit the ability of a nonresident to access medical care and one prohibiting state laws that burden interstate commerce. The state must respond by Dec. 27.

“This is the only medical procedure we can think of that is limited by someone’s ZIP code,” said Kevin Diaz, the chief legal advocacy officer at Compassion & Choices.

A separate federal class action suit claims that California’s law, which like the others requires patients to self-administer the drugs that end their lives, discriminates against patients dying of neurodegenerative diseases that make it physically impossible to take medication without assistance.

The plaintiffs, charging violation of the Americans With Disabilities Act and California law, include patients with multiple sclerosis and A.L.S., also known as Lou Gehrig’s disease, and their doctors. (In denying a request for a preliminary injunction, a judge ruled in September that the plaintiffs were asking California “to cross the line to euthanasia.”)

Catholic organizations, anti-abortion advocates and some disability groups continue to oppose aid in dying. The California Catholic Conference, the church’s public policy organization, for example, argued in June that liberalizing the state’s law “puts patients at risk of abuse and the early and unwillful termination of life.”

But polls regularly report broad public support. Last year, Gallup found that 74 percent of respondents agreed that doctors should be allowed to end patients’ lives “by some painless means” if they and their families request it.

Liberalizing the laws will likely increase participation, the bioethicist Dr. Pope predicts. “We know from evidence around the world that if you reduce the waiting period, or allow waivers in certain cases, it materially expands access,” he said.

Experts do not expect a major surge, however. Even in states where the practice has been legal for years, aid in dying accounts for very few deaths, a fraction of one percent. Of those who successfully navigate the process, moreover, about one-third do not use the drugs and instead die of their diseases.

Still, should Dr. Gideonse prevail in his lawsuit and a likely appeal, residency requirements in other regions might also start to fall. That could allow New York or Pennsylvania patients to use New Jersey’s aid-in-dying law, for instance, or Maryland and Virginia residents to seek providers in Washington, D.C.

It is an outcome that would please Dr. Gideonse. “This is an action in support of a needed and very important service,” he said. “I’m optimistic.”

Complete Article HERE!

‘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, whats 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!

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!