In pandemic era, the term palliative care is even more scary for some.

So specialists want to rename it.

By Haider J. Warraich

Palliative care has an image problem.

It’s a medical specialty that focuses on providing relief from the symptoms and stress of a serious illness to improve the quality of life for both patient and caregivers. But while the specialty’s goal is to help all patients with a serious, potentially life-threatening illness, palliative care specialists are almost always involved with patients approaching the end of life.

The result is that the very phrase “palliative care” has become frightening to many people with critical illnesses and their families, wrongly raising the idea that they are being sent to specialists who will help them die. Now a growing movement is advocating to rename palliative care so that patients — and doctors — won’t fear using it.

A recently published research study analyzing the general public’s perception of palliative care among more than 5,000 older Americans revealed that over 70 percent of participants did not even know what palliative care was.

Katy Butler, a health-care journalist who has written about her own experiences as a caregiver for her parents, wrote in an email: “Although I had a general sense of the meaning of palliative — to soften, to soothe — I didn’t understand anything about what it meant in medicine. People in crisis do not have the headspace to learn new vocabulary. It’s one of medicine’s major failings that it expects them to.”

Of those who are aware of palliative care, the same study shows almost two-thirds think it is the same as hospice, which is a service delivered at home or in a facility for someone with an expected survival of no more than six months.

Most physicians are likely to call palliative care specialists primarily when death is imminent — many worry that calling in a palliative-care consultation will increase anxiety and fear among patients. Diane Meier, a palliative care specialist who directs the Center to Advance Palliative Care, said “doctors are the group most fearful of death. We are people who like to achieve control over the uncontrollable. For our profession in particular, it is existentially threatening. Any acknowledgment that life is finite, that we don’t live forever, is like saying there is no God.”

Yet palliative care not only has been shown to repeatedly improve quality of life in patients with conditions such as cancer and heart failure, but also has been shown in some studies to help people live longer, perhaps through avoidance of potentially ineffective treatments, procedures and hospitalizations.

To increase the acceptability of palliative care for both patients and clinicians, as well as to delink it from death, palliative care practices around the country are substituting the name “palliative care” with “supportive care.”

There is evidence to suggest that this name change might reduce reluctance to engage palliative care specialists in the care of patients with advanced illness.

A study from MD Anderson Cancer Center in Houston showed that changing the name of the palliative care service to supportive care led to not only an increase in referrals by 41 percent but also earlier referrals: Patients seen by “supportive care” lived on average for 6.2 months, compared with 4.7 months among patients seen by “palliative care.” In a randomized trial, patients with advanced cancer viewed the term supportive care more favorably and were more likely to anticipate using supportive care rather than palliative care.

Words clearly matter and perhaps never more so than when life hangs in the balance. Yet even as evidence mounts, one study found that many palliative care specialists oppose a change of the specialty’s name. There are countless medical journals and organizations that have palliative care in their name.

“How do you identify as a tribe, as a field, as a subspecialty if you don’t know what your name is,” said Meier, a professor at the Icahn School of Medicine at Mount Sinai. Yet Meier also believes “we should call it whatever it takes to get it to the patients.”

The resistance to palliative care is ultimately rooted in our collective denial of our mortality. “Changing the name doesn’t change the underlying dynamic,” said Anthony Back, a palliative care physician and professor at the University of Washington in Seattle who was a co-author of the recent study on public perceptions. “Palliative care specialists are often used [late in the process] as the ‘brink of death consult.’ And if we don’t change ourselves, changing the name isn’t going to be enough.”

Even as the debate goes on, the use of “supportive care” is growing among those who treat patients, and instead of educating the public about what palliative care means, they want to focus on what palliative care does — what the benefits are not just to those at the very end of life.

Yes, palliative care specialists will be asked to see patients where other doctors find them of most value — when death is imminent — but the concept that really needs rebranding is death itself. As long as patients and doctors react to that fear by recoiling at its every mention, any new name reminding them of their mortality will quickly become tainted.

This seems important at this particular moment: the covid-19 pandemic has raised the specter of death for many people who hadn’t thought it would apply — yet — to them. People not only face a higher risk of premature death from the disease, they often have to do it in the worst circumstances possible — with a breathing tube down their throats and all by themselves.

Yet, because of the pandemic, palliative care doctors believe that they might have an opportunity to redefine what they do and demonstrate its value to patients in need.

“In New York, there was this urgency with which our colleagues sought our help, because they were under such extreme stress. It made me comment that covid-19 was the best marketing campaign palliative care could have asked for,” Meier said. “Our colleagues were looking to us to be the human side of medicine.”

In providing care to the sickest patients in the hospital, many of whom survived, palliative care specialists provided crucial supportive care not just to patients and their loved ones, but also the doctors struggling to take care of them.

The pandemic has given palliative care doctors more work than ever before and has added a new charge to palliative care, Anthony Back said, to fulfill our most human desire — to acknowledge the moment.

Complete Article HERE!

“I’m letting her down by seeing her suffer:”

managing a cancer home death during the pandemic

What is it like to care for someone you love who is dying from advanced cancer at home during lockdown?  Kate Binnie discusses it can heighten isolation and moral distress for the family caregiver

One evening in early May during lockdown, Alan calls me almost raving with exhaustion. He’s caring for his mum, my friend Mary, who is in the final stages of stomach cancer and who has chosen to die at home. It seems to him that this last part—where she has stopped eating or drinking and is in bed hooked up to a syringe driver for pain relief and sedative medication—is going on forever. Tonight she seems irritated and upset although she is not coherent, and Alan cannot soothe her. There is a live-in carer who is helping with the heavy lifting, changing of sheets and so forth, but otherwise Alan is completely alone apart from short daily visits from the community nurses. We talk for a while and I suggest he a) tells the palliative care team what is going on and b) writes down how he feels. An hour or so later an email arrives:

In lockdown with having more than too much time on my hands, I question how in 2020 this cruelty is continuing without any other choice than to endure it or look away.

The nurses keep saying that the drugs are “keeping Mum comfortable” but I can’t see there is any way to describe what I witness to display any kind of comforta slow death is not comfortable for anyone no matter how you sugar-coat it.

Alan is right. There is no evidence to prove that sedation improves quality of life for the patient with terminal delirium/agitation and of course we have no first-hand accounts from dying patients to draw on. [1] What he describes is the shock and moral dilemma of a totally untrained and unprepared member of the public, caring for a loved one in the last phase of life and finding it hard to communicate effectively with the professionals charged with his mother’s care. All this is made worse due to physical isolation during the covid-19 pandemic.

I feel like I’m failing my Mum, but actually it’s the law that is failing us both. I have had to administer oral morphine as the carer is not allowed because it is a controlled substance. My mind has turned to helping her end it, but I know she would not want me to ruin my life by doing something that would put me in prison. The desperation to see my mum in peace is a hugely strong emotion.  It made me wonder how stressed I, or someone in a similar position, has to get before the wish to end the suffering becomes stronger than self- preservation.

I have also considered taking some of the anti-anxiety medication that has been provided for her just so I can sleep. If I found it all too much, I could drink the three bottles of morphine and I assume that would do the trick.  Being someone that has struggled with life in the past and has turned to drink and drugs as a coping mechanism I’m amazed that I am the person that has to administer and has access to all these drugs.

Alan’s complex feelings about being in charge of controlled medications do not appear to be singular.  A recent review of family caregiver experiences of managing medications for patients dying at home revealed a lack of training and support for family caregiver who worry about over or under-medicating their loved one. [2] Patient and family attitudes to anticipatory medications and issues around misuse in home deaths are under-explored in the literature. As Alan discovered—and the Wilson review corroborates—health professionals lack confidence in discussing the ethical implications of family care givers becoming medication gatekeepers at a time of extreme stress and anticipatory grief. [3] A stress that is magnified during lockdown where normal structures of support are unavailable leaving Alan feel traumatised, angry and abandoned.

How on earth is it kind to put a family pet out of its misery but somehow say it’s ok to drag dying out like this in a human? Do you ever stop being a child when it comes to watching your parent deteriorate and have no real belief that they are not suffering? Surely this is traumatic for anyone?

With the lockdown as it is, I cannot share this with people properly and have to make do with video and phone. I’m glad I’ve managed to hold on to rational thought and have not acted illegally due to immense pressure added to the temptation of having the means left right under my nose.

How many people will maintain that rationality in this lockdown, and whose fault would it be if they buckled under the strain? At the very least collective responsibility but most likely the individual would carry the blame, and all the people that can’t face up to the truth about this problem with the law will continue to live in the world they describe to themselves as ‘kind and comfortable’ without acknowledging that other people feel their loved ones are being effectively tortured and the onlookers traumatised. It would never have been mum’s choice to die this way.

In spite of current urgency in the media and within health and social care cultures during the pandemic to talk about death, dying and grief, there’s another level of this conversation about dying that we are still not having. Yes, advance directives are important so that treatment plans, place of care, and death can be discussed, and informed choices made in good time. But what about the end bit? Is the messy reality of and fallout from a home death really considered?

Specialist palliative care professionals are trained to meet the physical, emotional, and ethical needs of patients and families, but they are not resourced to be available for all home deaths, all of the time. Getting adequate home support (especially during lockdown when resources are directed elsewhere and infection risk reduces human contact) requires hugely responsive joined-up thinking, enough manpower and resources, competent relatives and excellent communication.  It only takes a few mis-timed, mis-judged, and overly stressed conversations for this fragile system to break down. And still—the body takes its sweet time. There is nothing more lonely than waiting for someone you love to die. Even experienced doctors in this position are pushed to re-appraise what amount of suffering is acceptable at the end of life. [4]

A survey from 2019 by Dignity in Dying revealed that 73% of people with a life-limiting illness with six months or less to live would choose to change the law so that they could choose an assisted death. And yet in practice conversations about this are often taboo. My mother—who died nine months ago at home from heart failure—kept asking about the possibility of assisted dying in spite of her strong spirituality and huge optimism. This was not depression or despair, but a fine mind and a loving heart wanting to maintain her dignity and protect her child (me) although I reassured her constantly that we would cope and that it would be OK. I was there when she asked the specialist about it and there was a sense of real discomfort in the room, as if she’d made a bad smell at a polite dinner party. It took the two of us, supported by a fantastic GP and heart failure nurse, working calmly and consistently with everyone involved with Mum’s care to have open conversations about dying, until we had clarity about no more hospital admissions, no more oral drugs, or other treatment.

I have over 10 years’ professional experience of being with dying so knew what to expect when Mum’s time came. For example, I understood that there was a complex and delicate relationship between the patient (Mum) the family care giver (me) and the healthcare professionals, and that the maintenance of this relational triangle was key. [5] In terms of actual dying, I recognised that the introduction of sedatives would reduce mum’s ability to communicate, and towards the end I knew what the frightening changes in Mum’s breathing meant and also that this might go on for some time until her last breath. But for most family members, watching someone die at home with all of the responsibility that this entails, is an un-familiar and un-held experience, broken only by the precious 30 minutes a day when the community nurse visits to introduce some calm, practical sense into what feels like a Kafka-esque alternate reality. [6] And remember, this was pre-lockdown. I was not alone and had my family and friends around to help me rationalise, to provide physical comfort and time to eat and sleep.

I suggest that alongside the current policy-level drive for supporting home death underpinned by evidence that this is what many people would choose, there needs to be a rapid re-appraisal of what this means for family members who are not trained or supported to do the job of extreme caring (which includes the administering of controlled drugs), and for which they are totally unprepared. [7] Funding and provision must be made within primary care, informed by the principles and practices of palliative care, to properly educate and support families through the dying process and into bereavement so that what Alan describes in the desperate last 12 hours of his mother’s life does not end in long-term mental health consequences or worse, a suicide or prison sentence. On a more subtle, emotional level we need to understand that calling NHS111 at 2am when your mother is terminally agitated is a cry for help from someone experiencing the searing pain of a breaking attachment.

The next morning, I check my phone. Mum died at 3.45am.

I call Alan who is relieved and exhausted He is facing the organisation of his mum’s cremation, the sorting out of her stuff and his life onwards in a seemingly endless lockdown. There isn’t going to be a funeral.  I suggest he try to get some sleep, talk to his GP, think about bereavement counselling, but he is in no mood for any sort of healing conversations with the professionals. I want people to know about this Kate he insists. I can’t be the only one this is happening to, can it? No, it can’t be. Around 450 people die every day in the UK from cancer, and about 25% of all deaths occur at home. What is it like for those families at the moment with huge pressure on services and hands-on community support from friends and relatives an infection risk and therefore forbidden?

The covid-19 pandemic has shone a fresh light on the importance of talking about dying, loss and grief in strange times where relationships are cruelly truncated by sudden hospitalisations, induced comas and separation from loved ones and community rites of passage. But deaths like Mary’s from cancer are happening every day, all the time.

Alan’s story shows us that what is a difficult and lonely experience at the best of times is made so much more traumatic during lockdown. Alan hopes that sharing his experience will lead to a greater awareness of just how traumatic it can be to facilitate a home death (which sounds cosy yet can be anything but). He wants to tell us about what he feels is a cruel lie that dying is kind and comfortable, and he challenges us to examine the dissonance between the reality of his lived experience and the beautiful idea of the “good death”.

Complete Article HERE!

At New York hospital, a friar watches over those dying

‘The miracle is to let go’

Brother Robert Bathe, a Carmelite friar, outside of Bellevue Hospital in Manhattan.

By Kevin Armstrong
The morning after he turned 52 last month, Brother Robert Bathe emerged from the Millennium Hotel on West 44th Street. He ambled half a block into Times Square and reflected on the emptiness. A street cleaner’s whoosh broke the silence.

Dressed in a brown robe, the traditional garb of his Carmelite order, Bathe began his daily walk down Broadway. At 28th Street, he hooked left and continued to Bellevue Hospital, where he is a Roman Catholic chaplain and bereavement coordinator.

“Welcome to ground zero,” he said before a nurse trained a thermometer gun on his forehead and scanned for a reading.

It read 98.6. The nurse nodded.

“Normally,” he said, “the family is there with me bedside at death, and when we say the Our Father it is very emotional. Now I stare at a person that is taking their last breaths. I’m with a doctor and a couple of nurses. We’re saying goodbye.”

Bathe is the friar on the front line of the coronavirus pandemic. A native Tennessean who was a soil scientist before entering religious life at age 27, his Southern accent is the first voice many patients’ family members hear from the city’s oldest hospital when he calls to inquire about special needs.

Each morning, he reviews death logs. He then walks through the emergency department and intensive care unit, where he stands behind glass and cues up music on the smartphone he keeps in his pocket. “Bridge Over Troubled Water” is a favorite selection. On Funky Fridays, as he calls them, Bathe mixes Benedictine chants with James Brown. If patients are awake, he flexes his biceps or pumps a fist — encouragement to stay strong. He takes precautions when praying over the intubated, slipping on an N95 mask and face shield. In all, he ministers to more than 25 patients daily.

“Music gives a little more sense of sacredness so I don’t get distracted by nurses and doctors screaming,” he said. “I am focused on that patient, looking at that face. I know who that person is, imagine what it is like for them to be alive.”

Bathe speaks with a man across the street from Bellevue Hospital. He says he was called to become a friar more than two decades ago after witnessing a man die in North Carolina.
Bathe greets people in the Mount Carmel Place courtyard near the hospital. The coronavirus continues to paralyze New York and stretch the limits of its hospital system.

His pager pulses with death updates. It is programmed to receive alerts for cardiac emergencies, traumas and airway issues. Whenever a coronavirus patient on a ventilator needs attention, it comes across his screen twice. When a nurse who worked in the neonatal ICU died of covid-19 recently, Mary Ann Tsourounakis, Bellevue’s senior associate director of maternal child health, called pastoral care for help. A group of nurses grieved. First to arrive was Bathe, who led them in prayer in a small hallway.

“One of the most healing and loving I’ve heard,” Tsourounakis said. “People think it has to be a big production. Sometimes those moments are the moments.”

The virus continues to paralyze the city and stretch the limits of its hospital system. Confirmed cases have surpassed 185,000 and more than 20,316 deaths had been recorded, according to the New York City Health Department.

Bathe’s path to New York began in Knoxville, Tenn. He grew up around his grandfather’s cattle farm, went on frequent hikes as an Eagle Scout and eyed a career as a forest ranger while a teenager. His mother, Linda, worked at the University of Tennessee, and she consulted with faculty members about her son’s future in forestry. Prospects were slim, and alternate paths — archaeology or agriculture — were suggested.

He didn’t see himself traveling to Egypt to unearth tombs, so he dug into agricultural studies and toiled with botany and geology as well. Following graduation, he worked for the Buncombe County environmental health agency in North Carolina. Hired to protect groundwater, his release was to drop a line in honey holes for catfish, pitch a tent and listen to bluegrass songs after dark.

One day, Bathe was sent to meet a man named Robert Warren to evaluate his soil so he could build a house. When Bathe arrived, he saw Warren slumped over in his truck. As Bathe approached, he said, Warren grabbed his hand and asked, “Would you pray with me?”

They recited the Lord’s Prayer, he said. Moments later, he was dead, Bathe recalled. Bathe accompanied him to the hospital and attended the memorial service and funeral.

Bathe joined the Carmelites soon after, and in 1997 was assigned to Our Lady of the Scapular and St. Stephen’s Church, two blocks from Bellevue. Lessons followed.

One day, he said, a woman fell from her window in a neighboring building and through the church roof. Bathe was sent up to investigate.

“First dead body I ever smelled,” he says. “Life is tender.”

long his almost two-mile walk to work, Bathe’s appearance and demeanor have become well known and appreciated.

Transfers are part of the friar life. He taught in Boca Raton, Fla., and served as the vocation director from Maine to Miami before returning to Manhattan two and a half years ago.

In ordinary times, Bathe receives a monthly allowance of $250, lives in the St. Eliseus Priory in Harrison, N.J., and rides the PATH train. He fell ill in January, experienced the chills, registered a temperature of 101 and lost weight. He believed it was pneumonia then and self-isolated, using a back stairwell to his room. His brothers left meals outside his door, and he returned to Bellevue after convalescing. He has yet to be tested for covid-19.

Since March 30, the hospital has facilitated his participation in a program that provides free or discounted rooms for front-line workers, first at a Comfort Inn on the west side of Manhattan and now at the Millennium, to limit his commute. Along the route to work, his bald head, eager gait and hearty laugh are known to mendicants and administrators alike.

He carries on the tradition of the Carmelites, who have ministered at Bellevue since the 1800s, through periodic epidemics, saying Masses from the psychiatric ward to the prison unit. Colleagues include a new rabbi and a 20-year-old imam.

When a Catholic dies, he performs the commendation of the dead, a seven-minute service. His responsibilities range from distributing Communion to finding prayer books for patients across faiths to leading memorial services for staff. He is “staunchly against” virtual bereavement, which has become common amid the pandemic, insisting on providing a physical presence.

“People are looking for a miracle when the miracle is to let go,” he said. “Call me too practical, but I don’t pray they leap out of the grave like Lazarus. I think we’re meant for better. We’re meant for God.”

Hospital staffers are processing what has happened since the pandemic first gripped New York, and they’re bracing for a potential second wave. Since Lorna Breen, medical director for the emergency department at NewYork-Presbyterian Allen Hospital, died by suicide last month, Bellevue has increased its support services for employees. Questions about closure come from all mourners.

“Families ask, ‘Are we going to be able to have our loved one go to Mexico?’ ” Bathe said. “How are we going to do the next step, to bury our loved ones?”

long his almost two-mile walk to work, Bathe’s appearance and demeanor have become well known and appreciated.

On a recent Sunday, Bathe stepped outside for a breather in what some people call Bedpan Alley, the east side neighborhood that includes hospitals and a shelter on First Avenue. He checked on a homeless woman who sits in a chair facing Bellevue each day, rubbing his thumb against hers as she slept. A shoeless man was prone on the sidewalk. Bathe inquired about a can collector’s economic concerns. Business was slow.

“Are you a priest?” a woman on a bench asked Bathe.

“No, ma’am,” Bathe said. “I’m a friar.”

She introduced herself as Shonda. She was anxious about a meeting with her manager.

“You want to say a prayer for me?” she said.

“Put the phone down,” he said.

Bathe closed his eyes and prayed.

“Breathe,” he said.

“I’m going to breathe,” she said.

As he walked back to the hospital, his pager went off. “Cardiac Arrest,” it read, “10 West 36.”

“Somebody’s dying,” he said.

Bathe makes his way to the hospital from his hotel in midtown Manhattan.

Complete Article HERE!

Being an end-of-life volunteer helped me in many ways

By Laurie Barkin

In 2012, I made a decision to become a volunteer, end-of-life “spiritual care partner” through a program called Kol Haneshama.

When I signed up, I had four elders in my life — my parents and their longtime spouses — all of them in their 80s. My work as a psychiatric nurse had given me precious little experience with death and dying.

Kol Haneshama is a collaboration between the S.F.-based Bay Area Jewish Healing Center and the San Francisco Campus for Jewish Living (formerly the Jewish Home).

For me, getting involved seemed like a good way to learn what I needed to know about this phase of life in order to help my parents when the time came. The surprise bonus was the depth of support I received from my fellow volunteers.

The phrase Kol Haneshama is found in Psalms 150: “Kol haneshama t’hallel yah” (Let everything that breathes sing God’s praise).

We volunteers are paired with people who reside in their own homes, in nursing homes or in hospices. The 40-hour training program is intense and experiential. I remember crying a lot.

At monthly learning sessions and weekly group check-ins, rabbis teach us about spiritual-care interventions such as empathy, ways to help our residents decrease isolation by building community, and how to open conversations with our residents about their beliefs related to death and dying.

During our check-ins, many issues are raised, such as: Exactly what is spiritual care and how do we provide it? How do we sit with people suffering from dementia? What do we do if our resident asks if they are dying but the family doesn’t want them to know?

We volunteers number about 20. On average, 12 to 15 of us turn up for our lunchtime learning sessions/check-ins. Although we range in age from 28 through 83, most of us are women of retirement age. As a result of our work and our discussions, we have coalesced into a mutual support group that buoys us through the inevitable losses not only of our residents, but of those in our personal lives.

Over the last five years, three of the four elders in my life, including both of my parents, have died. I attended all of their deaths, making sure that they died as they requested, peacefully and without pain.

Even with all the support I have in my life, the loss of my parents feels like an unmooring. With both dying in their 90s, it is not the earth-shaking loss of unexpected death. Rather, it is more like letting go of a hand, one that held wisdom, history and love. I felt destabilized, my body shaken, disturbed, out-of-sync.

During the process of their dying, I leaned heavily on my family and friends for advice, guidance and just to feel their love. After each death, my Kol Haneshama group listened deeply as I described the experience in detail. Although I hate crying in front of people, tears streamed down my face. They handed me tissues, asked me questions and asked how they could help. They checked in with me individually between groups.

At a psychological trauma conference I once attended, neuropsychologist Allan Schore said, “The experience of feeling cared about in a relationship reduces the secretion of stress hormones and shifts the neuroendocrine system toward homeostasis.” The point here is that social support is the spine that holds us up during life’s most shattering moments.

Everyone heals in their own way and time, but in my experience as a psych nurse, as a spiritual care partner and as a grieving daughter, healing is enhanced when we are able to express feelings of loss in the presence of caring others.

Feeling love and concern from my family and friends has indeed helped to quiet my body and soothe my spirit. Talking with my fellow volunteers, people who understand the language, feelings and terrain of loss — as well as the underground and sometimes contradictory emotions involved — provided more support than I could have imagined.

Because of the support I received, when I think of my parents these days, I find myself smiling and shedding tears of gratitude at the same time.

Complete Article HERE!

A Chaplain on How to Talk About the Right to Die and Death With Patients

By Diane Rehm

Martha Kay Nelson has had a long career in hospice work. Rather than choosing hospice work, she believes hospice work chose her. Her training was at Harvard Divinity School. She did a yearlong internship as a hospice chaplain during her graduate work. The year after she graduated, she managed to combine her career as a chaplain with her work in hospice. She is in her mid-forties, with short hair and hazel eyes. Her warm, open face, earnest manner, and easy smile help me understand why she is so good at her work. We sit together in her office at Mission Hospice & Home Care in San Mateo, California.

DIANE: How do you feel about California’s “right to die” law?

MARTHA: Well, I have many feelings, and they could vary depending on the day or the hour. It depends on whom I’m talking to, and what her or his experience is. My overall sense about the law is that people have a right to make their own health-care decisions, whether it’s at the end of life or at any time up to that point. I know people have a hard time having these conversations, particularly early on, before they’re even sick. And then they get sick and it’s crisis time, and those decisions have to be made quickly. The End of Life Option Act to me is part of a spectrum of all those decisions and conversations that come at the end. It’s a new end point on that spectrum.

D: You’ve been in a leadership position here at Mission Hospice, not only learning, but teaching. Tell me what have been the elements of transmitting this information to others.

M: It’s been an interesting learning curve. I think even seasoned hospice professionals have had to adjust to a new option for patients, stepping into that terrain. The elements that have been important in teaching staff members, working with health-care partners, have been to get folks to acknowledge at the outset that this is a challenging topic, this is new terrain, there are profound implications, and not to shy away from it.

Some folks here at Mission Hospice didn’t want to participate, but the majority did, to have their questions answered or share some of their thoughts, their concerns. We’ve done this regularly enough that people felt they could talk freely about the End of Life Option Act. We didn’t want it to be whispered about awkwardly in the corner, that this law is coming and our patients are going to have the right to choose the option. As an agency, we’re not advocates for the law, we’re advocates for our patients, and we won’t abandon them. Having said that, any of our employees, if they’re not comfortable, don’t have to participate. They can opt out if they need to, and they would be fully supported.

D: What kinds of questions did you get from staff? What kinds of issues did they raise?

M: At the outset, a lot of general questions about details of the law, how it works, how are we supposed to communicate with our colleagues around it, what can we say to the patient and what can’t we, those kinds of things. Questions arose about accessibility to the law. If I have patients who are saying they just want to end it all, and they’re saying this a lot, but they’re not specifically asking about the law, then can I bring it up with them or not? We have a policy here at Mission Hospice that we let the patient lead. If a patient is inquiring about his or her options, then we will be there.

That’s one kind of question. Other clinicians have asked about folks who haven’t had the chance to be educated about medical aid in dying, or don’t have access to resources where they might have learned about it. What if it’s something they’d like to avail themselves of ? There’s kind of a social justice question there. There are also questions arising from specific cases. Every case is different.

D: Can you give me an idea of how many patients have actually come forward and asked you about the right to die?

M: We’ve been tracking some of these numbers, and to date, we’ve served around forty-five people since California’s law went into effect, which was a lot more than we anticipated. When back in 2016 we set out to draft our policy and prepare ourselves, we thought maybe we’d have four or five people in the first year. We had twenty-one. And about that same number inquired about the law, but never went all the way through the process. Either they actually died before they had a chance to use the law, or they changed their minds. I would imagine that it was split evenly.

D: Tell me about the process. So a patient comes to you and asks about the process, the law. How do you respond?

M: My initial response as a chaplain would be one of curiosity. I’d be interested in learning more about their thoughts and why they’re asking. It’s a big thing to ask about. Sometimes people are afraid to even inquire. They’re afraid of being shamed or judged. So I’d want to let that person know that I’m glad they’re asking. And then we’d have a conversation, whatever they would wish to say at that time. Next, I would contact the doctor and the rest of my interdisciplinary team members and would let them know the topic had been broached. Then a doctor would probably go and make a direct visit, which would be considered the first formal request, if the decision was made to pursue that course.

We really encourage the other team members to make sure they keep talking to one another—the social worker, the nurse, the spiritual counselor, home health aides, and volunteers who might also be involved. Through a team effort, we would need to have clarity on how much privacy the patient would want. Patients have the right under the law to not tell anyone but the doctors they’re working with, not even family members. Our experience has been that that’s not often the case. Usually there is communication with family.

D: Who makes the initial judgment that the patient has six months or less to live?

M: The attending physician on the case. And if the patient inquires about the law, and his or her doctor says, “I’m not comfortable being involved with this,” that’s one way we might get involved. Or it might be a hospice patient already on our service.

D: I saw in your waiting room a brochure for Death Cafes. Can you tell me about them?

M: The Death Cafe movement started several years ago in England. It’s basically having a conversation over coffee and cakes in a public venue. Anyone is welcome to attend, and the purpose is open-ended. The goal is to talk about death in any way you wish. There does need to be a facilitator, someone who is able to establish ground rules in etiquette so folks aren’t talking over one another. Folks that host them tend to have some level of experience in end-of- life care, in thanatology, but anyone can sign up. I’ve led a couple of them.

D: How successful do you think Death Cafes are as teaching tools, as comforting elements in the whole discussion of death?

M: I think Death Cafes are successful in meeting the needs of folks who already want to talk about death. If you show up at a Death Cafe, there’s something in you that is already ready to speak and to hear what other people are thinking. It can serve as a cross-pollination of ideas and thoughts, and normalization. The cafes meet a kind of thirst that we have in our culture to speak about these things openly and not be afraid. How you get people to Death Cafes is another question. I’ve had some people say they’re offended by that name, or they don’t want to attend a Death Cafe because it sounds morbid.

D: What is the best way to reach people? How do we get the conversation started even before we’re sick?

M: There’s no one best way. It’s about being creative and really getting to know your community. In my family, I’ve been lucky in that we’ve always talked about death openly. I have ongoing conversations now with my father. He’s about to turn eighty-three, and I really value the kinds of discussions and ruminations we have.

It’s wonderful. We’ve started kind of reflecting theologically, talking about, wondering together, what happens after we die. To be able to have that in a father-daughter kind of way. I’m well aware of what a precious opportunity it is to hear his thoughts. As he comes into the “lean and slippered pantaloon” time of his life, as he might say—some of his last chapters— I feel really blessed that he’s willing to discuss it openly.

D: How do you open that discussion for the general public?

M: I think it takes courage and a conscious decision to ask a question of someone in a moment when you feel there’s an opportunity. Someone speaking about her or his health, some decline, or illness, grief, and you ask, “How would you like things to be?” And perhaps even being a bit persistent if you get an initial brush-off, which often happens, but trying again, and saying, “ Really, I would like to know.”

I also think reaching children is important. I think that in our death-denying culture, children are really shielded from all things involved with death. Things happen at the funeral parlor, no longer at home, and we try to protect children in all kinds of ways. But if you don’t allow children who want to be involved in a loved one’s illness or death, I think you’re doing them a disservice. You’re keeping them from something that is integral to life for all of us. The earlier you can start to have those experiences and wonder about them and ask the questions, the more skills you will have as you age to meet them openly.

D: Have you decided what you want for yourself at the end?

M: I have no idea. I do know that I would like to have the right and the option to choose. I understand that even just knowing that the option is available can bring a lot of comfort to people. I haven’t faced a terminal illness that might cause me great physical pain or suffering, or mental or spiritual suffering. There’s one area that gives me pause, which is when folks choose medical aid in dying because they’re used to being in control in their lives. They might not have physical or mental or spiritual suffering, but they want to have personal agency. I think they entirely have the right to do that. But I also believe we’re in a culture that distorts the degree to which we think we’re in control. So on a soul level, on a much deeper level, I wonder, Are we messing with something there? How is it that we’re making such a profound decision from a place of a distorted need for control? And then I think, Well, what do I know about their journey and what they need? Maybe this is the one time they’ve ever made a strong, solid decision for themselves, and who am I to say what it is they need to learn?

D: But isn’t pain, intractable pain and suffering, and the inability to care for oneself, a sufficient reason to respect someone’s decision in terms of his or her final say?

M: Absolutely. I think clinicians have more trouble when they can’t observe visible intractable pain, when they can’t see physical or emotional suffering. It’s harder for clinicians to get their heads and hearts around that. Why is someone making this choice? And so I do a lot of counseling with staff about that, exploring how to meet the needs of the person when we don’t see them suffering, at least not on the surface. And we have to remind ourselves, clinicians need to express those feelings and concerns, so that when they’re dealing with patients directly, they can be respectful and meet them on their own terms.

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Patients Want To Die At Home, But Home Hospice Care Can Be Tough On Families

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“I’m not anti-hospice at at all,” says Joy Johnston, a writer from Atlanta. “But I think people aren’t prepared for all the effort that it takes to give someone a good death at home.”

Even though surveys show it’s what most Americans say they want, dying at home is “not all it’s cracked up to be,” says Johnson, who relocated to New Mexico at age 40 to care for her dying mother some years ago, and ultimately wrote an essay about her frustrations with the way hospice care often works in the U.S.

Johnston, like many family caregivers, was surprised that her mother’s hospice provider left most of the physical work to her. She says during the final weeks of her mother’s life, she felt more like a tired nurse than a devoted daughter.

According to a recent Kaiser Family Foundation poll, seven in 10 Americans say they would prefer to die at home, when the time comes. And that’s the direction the health care system is moving, too, hoping to avoid unnecessary and expensive treatment at the end of life.

The home hospice movement has been great for patients, says Vanderbilt palliative care physician Parul Goyal — many patients are thrilled with the care they get.

“I do think that when they are at home, they are in a peaceful environment,” Goyal says. “It is comfortable for them. But,” she notes, “it may not be comfortable for family members watching them taking their last breath.”

Still, when it comes to where we die, the U.S. has reached a tipping point. Home is now the most common place of death, according to new research, and a majority of Medicare patients are now turning to hospice services to help make that possible. Fewer Americans these days are dying in a hospital, under the close supervision of doctors and nurses.

Hospice allows a patient deemed to have fewer than six months to live to change the focus of their medical care — from the goal of curing disease, to a new goal of using treatments and medicines to maintain comfort and quality of life. It is a form of palliative care, which also focuses on pain management and quality of life, but can be provided while a patient continues to seek a cure or receive treatments to prolong life.

Usually, hospice care is offered in the home, or sometimes in a nursing home.

Since the mid-1990s, Medicare has allowed the hospice benefit to cover more types of diagnoses, and therefore more people. As acceptance grows among physicians and patients, the numbers continue to balloon — from 1.27 million patients in 2012 to 1.49 million in 2017.

According to the National Hospice and Palliative Care Association, hospice is now a $19 billion industry, almost entirely funded by taxpayers. But as the business has grown, so has the burden on families, who are often the ones providing most of the care.

For example, one intimate task in particular changed Joy Johnston’s view of what hospice really means — trying to get her mom’s bowels moving. Constipation plagues many dying patients.

“It’s ironically called the ‘comfort care kit’ that you get with home hospice. They include suppositories, and so I had to do that,” she says. “That was the lowest point. And I’m sure it was the lowest point for my mother as well. And it didn’t work.”

Hospice agencies primarily serve in an advisory role and from a distance, even in the final, intense days when family caregivers, or home nurses they’ve hired, must continually adjust morphine doses or deal with typical end-of-life symptoms, such as bleeding or breathing trouble. Those decisive moments can be scary for the family, says Dr. Joan Teno, a physician and leading hospice researcher at Oregon Health and Science University.

“Imagine if you’re the caregiver, and that you’re in the house,” Teno says. “it’s in the middle of the night, 2 o’clock in the morning, and all of a sudden, your family member has a grand mal seizure.”

That’s exactly what happened with Teno’s mother.

“While it was difficult for me to witness, I knew what to do,” she says.

In contrast, Teno says, in her father’s final hours, he was admitted to a hospice residence. Such residences often resemble a nursing home, with private rooms where family and friends can come and go, and with round-the-clock medical attention just down the hall.

Teno called the residence experience of hospice a “godsend.” But an inpatient facility is rarely an option, she says. Patients have to be in bad shape for Medicare to pay the higher in-patient rate that hospice residences charge. And by the time such patients reach their final days, it’s often too much trouble for them and the family to move.

Hospice care is a lucrative business — now the most profitable type of health care service that Medicare pays for. According to Medicare data, for-profit hospice agencies now outnumber the nonprofits that pioneered the service in the 1970s. But agencies that need to generate profits for investors aren’t building dedicated hospice units or residences, in general, mostly because such facilities aren’t profitable enough.

Joe Shega, chief medical officer at for-profit Vitas, the largest hospice company in the U.S., insists it’s the patients’ wishes, not a corporate desire to make more money, that drives his firm’s business model. “Our focus is on what patients want, and 85 to 90 percent want to be at home,” Shega says. “So, our focus is building programs that help them be there.”

For many families, making hospice work at home means hiring extra help.

‘I guess I’ve just accepted what’s available’

At the kitchen table of her home outside Nashville, hospice patient Jean McCasland is refusing, on the day I visit, to eat a spoonful of peach yogurt. Each morning, nurse’s aide Karrie Velez pulverizes McCasland’s medications in a pill crusher and mixes them into her breakfast yogurt.

“If you don’t, she will just spit them out,” Velez says.

Like a growing share of hospice patients, McCasland has dementia. She needs a service that hospice rarely provides — a one-on-one health attendant for several hours, so the regular family caregiver can get some kind of break each day.


John McCasland (right) of Goodlettsville, Tenn., hired a private caregiver to help with his wife, Jean (left) who suffered from dementia for eight years. Even when hospice took over, he still found he needed the extra help from Karrie Velez (center). Jean died in October after 13 months on home hospice.

When Velez is not around, John McCasland — Jean’s husband of nearly 50 years — is the person in charge at home.

“I have said from the beginning that was my intention, that she would be at home through the duration, as long as I was able,” John says.

But what hospice provided wasn’t enough help. So he’s had to drain their retirement accounts to hire Velez, a private caregiver, out-of-pocket.

Hospice agencies usually bring in a hospital bed, an oxygen machine or a wheelchair — whatever equipment is needed. Prescriptions show up at the house for pain and anxiety. But hands-on help is scarce.

Medicare says hospice benefits can include home health aides and homemaker services. But in practice, that in-person help is often limited to a couple of baths a week. Medicare data reveals that, on average, a nurse or aide is only in the patient’s home 30 minutes, or so, per day.

Jean McCasland’s husband hasn’t complained. “I guess I’ve just accepted what’s available and not really thought beyond what could be,” John says. “Because this is what they say they do.”

Families rarely consider whether they’re getting their money’s worth, because they’re not paying for hospice services directly: Medicare gets the bills. John keeps his monthly statements from Medicare organized in a three-ring binder, but he’d never noticed his agency charges nearly $200 a day, whether there is a health provider in the home on that day or not.

That daily reimbursement also covers equipment rentals and a 24-hour hotline that lets patients or family members consult a nurse as needed; John says that gives him peace of mind that help is a phone call away. “There’s a sense of comfort in knowing that they are keeping an eye on her,” he says.

The rate that hospice charges Medicare drops a bit after the patient’s first two months on the benefit. After reviewing his paperwork, John realizes Medicare paid the hospice agency $60,000 in the first 12 months Jean was on hospice. Was the care his wife got worth that?

“When you consider the amount of money that’s involved, perhaps they would provide somebody around the clock,” he says.

Sue Riggle is the administrator for the McCaslands’ hospice agency, and says she understands how much help patients with dementia need.

“I think everybody wishes we could provide the sitter-service part of it,” says Riggle. “But it’s not something that is covered by hospices.”

Her company is a small for-profit business called Adoration; she says the agency can’t provide more services than the Medicare benefit pays for.

I checked in again with John and Velez (Jean’s long-time private caregiver) this winter. The two were by Jean’s side — and had been there for several days straight — when she died in October. The hospice nurse showed up only afterward, to officially document the death.

This experience of family caregivers is typical, but often unexpected.

‘It’s a burden I lovingly did’

“It does take a toll” on families, says Katherine Ornstein, an associate professor of geriatrics and palliative medicine at Mount Sinai Hospital in New York, who studies what typically happens in the last years of patients’ lives. The increasing burden on loved ones — especially spouses — is reaching a breaking point for many people, her research shows. This particular type of stress has even been given a name: caregiver syndrome.

“Our long-term care system in this country is really using families — unpaid family members,” she says. “That’s our situation.”

A few high-profile advocates have even started questioning whether hospice is right for everybody. For some who have gone through home hospice with a loved one, the difficult experience has led them to choose otherwise for themselves.

Social worker Coneigh Sea has a portrait of her husband that sits in the entryway of her home in Murfreesboro, Tenn. He died of prostate cancer in their bedroom in 1993.


Coneigh Sea is a social worker from Murfreesboro, Tenn., who cared for her husband as he died on home hospice. Now, she wants to make sure her children don’t do the same for her.

Enough time has passed since then that the mental fog she experienced while managing his medication and bodily fluids — mostly by herself — has cleared, she says. But it was a burden.

“For me to say that — there’s that guilt,” she says, then adds, “but I know better. It was a burden that I lovingly did.”

She doesn’t regret the experience, but says it is not one she wishes for her own grown children. She recently sat them down, she says, to make sure they handle her death differently.

“I told my family, if there is such a thing, I will come back and I will haunt you,” she says with a laugh. “Don’t you do that.”

Sea’s family may have limited options. Sidestepping home hospice typically means paying for a pricey nursing home, or passing away with the cost and potential chaos of a hospital — which is precisely what hospice care was set up to avoid.

As researchers in the field look to the future, they are calling for more palliative care, not less — even as they also advocate for more support of the spouses, family members and friends who are tasked with caring for the patient.

“We really have to expand — in general — our approach to supporting caregivers,” Ornstein says, noting that some countries outside the U.S. pay for a wider range, and longer duration of home health services.

“I think what we really need to do is be broadening the support that individuals and families can have as they’re caring for individuals throughout the course of serious illness,” Ornstein says. “And I think that probably speaks to the expansion of palliative care in general.”

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