Unlike most people, Anne-Marie Keppel isn’t afraid to talk about death. From her home office on Craftsbury Common, she works as a death doula and life cycle funeral celebrant through her businesses Stardust Meadow and Village Deathcare. When jewelry maker and Hardwick resident Cecilia Leibovitz lost Michael Secore — her partner of nearly 18 years — to cancer last September, Anne-Marie was there to help ease the transition and provide support to the family during their time of grief.
Now Cecilia makes memorial jewelry to commemorate loved ones, using pieces of clothing and personal artifacts. We sat down around Anne-Marie’s table with glasses of mint tea to talk about our experiences with death and why we are so afraid to discuss it openly.
It’s not quite the peaceful drifting off I’d imagined for my dad.
By Harriet Brown
At age 86, my father had survived both colon cancer and a stroke that left him with aphasia. His mind was sharp, though, and he wasn’t depressed. A crack bridge player with a passion for Italian restaurants, he was popular at his assisted living facility even though he couldn’t speak much. He told me he’d lived a good life and wasn’t afraid of dying, and he didn’t want to go through any more medical trauma. No chemo, no radiation, no surgeries, no treatment.
His advance directive read DNR and DNI — do not resuscitate, do not intubate. No one would break his ribs doing CPR or make bruises bloom along his arms trying to find a vein. As his health-care proxy, I was completely on board. I’d read Sherwin Nuland’s “How We Die,” Atul Gawande’s “Being Mortal,” Elisabeth Kubler-Ross’s “On Death and Dying.” Comfort would be the priority and any pain would be “managed,” which I assumed meant erased.
Up to 80 percent of Americans die in hospitals or nursing homes, and a third spend at least 10 days in an intensive care unit before they die, many of them comatose or on a ventilator. A week after his sudden diagnosis of widespread metastatic disease, my father was lucky enough to get a bed in our town’s only hospice, a homey facility staffed with attentive and experienced caregivers. The alternative would have been a hospital bed in my living room, so it was a relief to know that my father was in the hands of professionals. They would know what to do.
And they did. The nurses and caregivers were gentle as they repositioned my father in bed, explaining each move even when it seemed he couldn’t hear or follow. When he could no longer swallow they squirted morphine into his cheek and rubbed it so the medicine would be absorbed. “This will make you feel better,” they would say, and my father would turn his head and open his chapped lips like a baby bird.
But his death was not the peaceful drifting away I’d always imagined, where you floated into a calm, morphine-induced sleep, your breath came slower and slower and then simply stopped. He vomited blood over and over. A lifelong stoic who never complained of pain — even when he’d broken a hip the year before — he twitched restlessly in bed, eyes closed, his brow furrowed and his skin clammy.
The magical “managing” of pain and nausea I’d anticipated turned out to be more aspirational than real. The hospice nurse prescribed one anti-nausea medication, then another, without success. Eventually, Ativan and Haldol settled the nausea, and morphine helped the pain. My father was lucky it helped; about 25 percent of people die in pain. One caregiver confided to me, “There are people whose pain we never get under control.”
For days we watched my father’s cheeks hollow, watched him pluck at the thin blanket that was all he could bear on his body. His kind brown eyes glazed over, and some trick of the light made them look blue under his half-closed lids. Sometimes he sat up suddenly, reaching forward, and then fell back on the pillows. I knew there was a name for this behavior, terminal restlessness, that it’s common during the dying process. I knew the gurgling sounds he made as he breathed came from his body’s inability to clear secretions, and that — according to hospice — it probably wasn’t uncomfortable for him.
Leaving the hospice facility one night, I told my 81-year-old aunt that I wished I had the nerve to put a pillow over his face. “I’ll stand guard at the door while you do,” she replied. Dying is hard work. And it’s hard to watch.
On the last night, I sat with my father until the summer sky began to darken. Then I gathered my belongings and leaned over the bed where he lay unresponsive, his eyes closed, his mouth half-open. I kissed his stubbled cheek. “Dad, I’m going now,” I told him. “It’s time for you to go too.” He died a few hours later. He was alone, as most people are when they die, so I don’t know if it was peaceful, if he made a sound or opened his eyes or just stopped breathing.
After he died, I was haunted by scenes of his suffering. I remembered looking out a hospital window nearly 30 years earlier with my newborn daughter in my arms, realizing that every one of the people I saw on the street had been born. For every person walking down Seventh Avenue, a woman had borne pain that tore her body open. It was a horrifying thought.
Drugs help with the pain of childbirth, but they can’t take it away completely. It’s the same with dying.
“Suffering is an ineradicable part of life, [like] fate and death,” wrote psychologist Viktor E. Frankl in his bestseller “Man’s Search for Meaning.” He was something of an expert, having survived nearly three years in a variety of Nazi camps.
Of course, my father’s suffering was nothing like the kind Frankl witnessed. But still, death, like birth, is a creaturely process, a force that wrenches us onward without consulting our preferences or respecting our sensibilities.
In the weeks after my father’s death, I began to understand in a deeper way the meaning of a good death. No drugs took away all my father’s physical pain and nausea. But in the care he was given, the morphine, the quiet words, the repositioning and cool cloths on his forehead, his suffering was addressed even if it couldn’t be “managed.”
And that, I think, is what we all want. Not just freedom from beeping machines and needles and the cold lighting of an ICU, though that matters, too. Not just the absence of pain, which isn’t possible for everyone. But the solace of being seen and heard and acknowledged brings comfort even in the face of deep suffering.
I hope it’s something we can remember as we move toward a society where more of us can have a truly good death.
Some hospitals and hospices have policies that forbid nurses to be part of the process or even to discuss end-of-life options.
By Emilie Le Beau Lucchesi
When Ben Wald, 75, was dying of cancer in 2012, he wanted to use Oregon’s Death with Dignity Act to receive a prescription for a lethal medication that would end his life. His hospice nurse, Linda, was part of the discussion and provided both information and support, said his wife, Pam Wald, of Kings Valley, Ore.
His colon cancer had spread to his lungs, and his weight dropped from 180 to 118 pounds. He struggled to speak or eat.
When he was ready to end his life, the couple wanted Linda with them, but the hospice organization she worked for did not allow it, Mrs. Wald said. The organization allowed other hospice workers, such as social workers and massage therapists, to be present, but not the doctors or nurses it employed.
Without a nurse present, Mrs. Wald was going to be alone with her husband when he died. She wanted someone knowledgeable to support her through the process. She reached out to Compassion & Choices, a national advocacy group for aid in dying. The group paired her with two volunteers, one of whom was a retired intensive care nurse.
“You watch your husband die and you hear that change in breathing,” Mrs. Wald said. “Jane, the I.C.U. nurse, she said, ‘The breathing changes. You’re doing fine, Pam. Keep holding his hands.’”
But many may still run into the problem the Walds had, because some hospitals and hospices see medical aid in dying as conflicting with their traditional mission of protecting life and avoiding harm to patients. Those that are faith-based typically follow church policy against medical aid in dying.
Some have policies that forbid nurses even to discuss end of life options. Others hold a “neutral” stance on aid in dying, but bar doctors or nurses from being in the room while a patient self-ingests the medication and begins the dying process.
“We want to be clear: Nurses absolutely do not have to be present or provide that comfort if they feel they have a moral or religious objection. Our code of ethics states they have the right to object,” Ms. Stokes said.
But for those who wish to support their patients, the new statement defines key words such as “participation” and “presence.” These definitions are meant to encourage organizations to be clearer in terms of a nurse’s ability to answer questions during the decision-making process or offer support in the final moments.
Currently, Ms. Stokes said many company policies are vague and difficult to interpret. Even terms like “to witness” or “to be present” may be open to interpretation. Ms. Stokes said the association has received inquiries from nurses wondering if covering their eyes qualified as not witnessing.
Of the policies analyzed, 78 percent prevented nurses or other staff members from being present during or after the prescription was taken. The authors described the policies as “relatively silent” about the rationale for their decisions, but some referred to medical aid in dying as being “outside the scope of hospice practice.” Others did not want to be seen as “taking sides.”
The hospices that allowed staff members to be present made note of the core hospice value of not abandoning patients.
The study found that although the policies tend to be vague, there is a clear distinction between the role of the physician and that of the hospice. Physicians who write the prescription might not be employed by the hospice and therefore not subject to the organization’s particular policies. Policies note that physicians have a responsibility to respond to any complications that might occur after the prescription is ingested.
Each jurisdiction that permits medical aid in dying publishes annual reports on who took the medication, and why, where and whether medical practitioners were present.
In California’s report for 2018, only 54.3 percent of aid in dying patients were reported to have a medical care provider present at the time of ingestion. In Oregon’s 2017 report, only 33 percent of patients did. Many of these medical providers did not remain at the bedside, and 70 percent of patients in Oregon did not have a provider present at the time of death.
Keith Seckel, a registered nurse in Corvallis, Ore., believes it can be helpful to have a medical practitioner present. He has taken care of about a dozen patients who utilized their state’s aid in dying law. He was with them and their families as they took the lethal medicine and died. Mr. Seckel said a nurse is helpful in managing a patient’s discomfort or pain before taking the medication.
Many patients at the end of life experience anxiety, constipation, nausea, pain or shortness of breath. A patient who is short of breath, for example, might get anxious about swallowing the medicine for fear of choking. A nurse can provide reassurance, which Mr. Seckel said takes the pressure off the patient and family members to “get it right.”
He said that having a nurse in the room can also ease the stress for family members, particularly when their loved one makes unfamiliar sounds or unexpected movements.
Mr. Seckel said the timeline varies for each patient. The patient usually takes an anti-nausea medication anywhere from 15 to 60 minutes in advance. In all jurisdictions, the patient must administer the medicines themselves. Nurses and physicians are prohibited from assisting.
Mr. Seckel said some patients then take an anti-anxiety medication before the fatal dose. Within minutes, patients typically report feeling drowsy.
“I might offer to the patient, ‘If you can feel it hitting you, if there is something you want to say, say it now,’” Mr. Seckel said.
The patient then slips into unconsciousness. Mr. Seckel said he watches for signs of discomfort or pain. Some family members ask him for updates as their loved one’s breathing begins to slow or color drains from their skin. Others, Mr. Seckel said, are too connected to the moment to ask questions but want to review the experience with him later.
Because the laws clearly state that a patient must be able to take the medicine without assistance, Mr. Seckel said patients often have questions about their disease progression and how much time they likely have until they can no longer take the lethal medicine on their own. Often, the role of the nurse is to give patients information so they can determine a timeline for themselves.
He said there have also been times when he has been called to the bedside after the patient passed. He said it’s not uncommon for family members to want confirmation that their loved one is truly gone. “I’ve had more than one person say, ‘I’m glad you were there, we wouldn’t have known what to do,’” Mr. Seckel said.
A palliative care physician struggles with the complex realities of dying at home, and the unintended consequences of making it a societal priority.
By Richard Leiter, M.D.
“If time were short, where would you want to be?”
As a palliative care physician, I regularly ask my patients, or their family members, where they want to die. The specific language I use depends on what they know, what they want to know and how they process information, but the basic premise is the same. Having asked this of hundreds of patients, I have come to expect most will tell me that they want to be at home.
But recently I have struggled with the complex realities of dying at home, and the unintended consequences of our making it a societal priority.
It is emotionally and intellectually compelling that patients should die in their own homes, surrounded by loved ones in a comfortable, familiar environment. For patients dying of end-stage disease, be it cancer, heart disease or something else, even the best hospitals are unlikely to be able to “fix” the underlying problem. We worry that people will go through expensive and potentially painful tests and interventions that have little chance of changing the ultimate outcome. And the opportunity costs are high; time waiting for a scan or procedure could be spent getting financial affairs in order or saying goodbye.
While there are still those who subscribe to the idea that excellent health care demands doing everything possible to prolong a life, many doctors and patients now prefer a less intensive approach when time is short. Rates of hospice enrollment have increased and the home has re-emerged as a place to die, not only preferred by patients and families but also heavily recommended by clinicians, especially in my field.
The system is imperfect, though. Unless a family has the significant resources necessary to hire aides or nurses, informal caregivers become responsible for nearly everything — from feeding to bathing to toileting. These tasks often get harder as the dying person weakens. In my experience, most family members want to care for their loved ones at home, but many are unaware of caregiving’s physical and emotional toll. And the length of time a patient spends in hospice care is difficult to predict, sometimes requiring caregivers to take significant time away from work or other family members.
Complicating matters, I frequently detect ambivalence in patients who tell me they want to die at home. Some are comforted by the reliability of the nursing care and easier accessibility of IV medications in the hospital. For others, dying at home may not be their top priority. Parents may want to protect their young children’s physical space from death. Similarly, one patient’s wife told me through tears that their adult son had died suddenly in their home a few years earlier; she could not bear the thought of watching her husband die in the same place.
We should not be surprised, then, that some patients who do enroll in hospice end up back in the hospital. And yet we in palliative care often view these cases as failures. We wonder what the critical gap was that led the family to call 911 or come to the emergency department. Was the patient’s pain uncontrolled? Were medications unavailable? Did the family panic? Something must have gone wrong.
I wonder, though, if we’ve adopted the wrong approach. As a doctor who regularly asks my patients where they “want” to die, I often worry about what this will look like if they choose home. I am concerned about the unacknowledged caregiving burden for families and friends. In addition, many people with advanced disease experience escalating symptoms, like pain or shortness of breath, that even the best hospices have difficulty managing in the home. In these situations, I am caught between the passionate rhetoric of my field, the spoken and unspoken wishes of my patients, and my clinical judgment. The patient in front of me always takes precedence, but my cognitive dissonance is difficult to escape.
To be sure, dying in the hospital has its own trade-offs. Though we can make more, and faster, medication adjustments, severe symptoms can be difficult to treat regardless of the setting. And as much as we try, it’s nearly impossible to alter the health care system’s usual rhythms. Overflowing hospitals often lack the flexibility to give dying patients the privacy of a single room. We cannot guarantee that they will not be woken up by the squeal of a malfunctioning IV pump or the chaos of clinicians scrambling to help another patient. Family and friends may live hundreds of miles away, preventing them from being with their loved ones at critical moments. While an inpatient hospice facility, which represents a third option, can provide hospital-level care in more of a homelike environment, Medicare and other insurance providers have set a high threshold for the few available beds. Most patients are only eligible if they are in the last few days of life or have severe, uncontrolled symptoms that would otherwise require hospitalization.
This dilemma entered my personal life earlier this year. The caregiver for my 96-year old grandmother found her slumped over and unresponsive in her wheelchair in her apartment, where she lived alone, but with the support of aides around the clock. She did not regain consciousness, and the paramedics arrived to take her to the hospital. When my uncle called to tell me what was going on, I was unsure of how to respond. My grandmother’s health and cognition had been declining over the past few months, but her quality of life was still good. In that moment, though, my clinical intuition was that she was dying. As a palliative care physician, wasn’t it now my job to protect my grandmother from spending what could be her final hours in a hospital? On the other hand, without seeing her how could I be sure that whatever was happening could not be fixed? With uncertainty and emotion clouding my judgment, I froze.
The paramedic took the phone and gently explained that he wanted to ensure my grandmother had all the care she needed, whatever the outcome. Taking her to the hospital was the right decision. The doctor in the emergency department empathically told us he thought my grandmother was dying and recommended we focus on ensuring that the short time she had left was as comfortable as possible. The nurses quietly checked on her throughout the night, looking for any signs of distress. My grandmother died the next morning — in the hospital and at peace.
The quality and consistency of end-of-life care are not where they need to be. To ensure that all people receive the same compassionate care that my grandmother did, we need to focus not only on where, but also on how they die. When we view all deaths in the hospital as failures, we risk neglecting a critical opportunity to improve the dying experience for many of our society’s sickest and most vulnerable. Clinicians across medicine should elicit and, whenever possible, honor their patients’ preferences for where they want to die. At the same time, we need to acknowledge our own uncertainties and be honest — with ourselves and our patients — about the difficult trade-offs these choices entail.
When I ask Matthew Cullen to share one of his favorite experiences volunteering at the Joan Nicole Prince Home, his answer surprises me.
“Giving my first bed bath,” he says.
When you give a bed bath, “you use a wash cloth to wash a patient’s body,” Cullen explains, adding, “The residents are really grateful for it. One resident told me, ‘Thank you for that. I feel much better.’
This is the third summer that Cullen, a senior at Union College, has spent caring for dying residents at the Joan Nicole Prince Home in Scotia.
His shifts are a mix of mundane tasks aimed at making residents more comfortable and keeping them company. Sometimes that involves chatting at the kitchen table. Sometimes it involves sitting quietly while they rest or sleep.
“A lot of time I’m the only person here,” says Cullen, a native of Guilderland.
Helping terminally ill patients live their final days in peace and comfort might sound like a lot of responsibility for a 21-year-old college student.
But Cullen is more than up to the challenge. The ebullient red-head speaks of his work at the Joan Nicole Prince Home with insight, compassion, even wisdom.
“It can be sad sometimes, but the great majority of the time, it’s happy,” Cullen says. “The patients are sharing their memories and stories with you, and you’re doing the same.
Cullen isn’t the only college student who spends his summers volunteering at the Joan Nicole Prince Home.
He’s enrolled in a unique summer program, called CARE (Community Action Research and Education), that sends college students to volunteer in residential homes for the dying, which provide free, round-the-clock bedside care to terminally ill patients whose families are unable to care for them.
CARE got its start at Union College five years ago, and has steadily evolved since then.
It is now offered in partnership with Skidmore College, and open to students from a handful of other schools, such as Siena College.
This summer there are 13 students volunteering at four different residential homes for the dying: the Joan Nicole Prince Home, Gateway House of Peace in Ballston Spa, Mary’s Haven in Saratoga Springs and Hospeace House in Naples.
“These students are seeing the dying process as it happens,” Carol Weisse, the Union College professor who founded CARE, told me.
But it isn’t all gloom and doom.
Far from it.
“There’s joy in these homes,” Weisse said. “For the students to see that, it makes death less frightening.”
Residential homes for the dying — also known as comfort care homes — serve a noble purpose.
The staff and volunteers at these facilities become a kind of surrogate family for residents, doing “everything a family member would do,” said Weisse, who directs Union’s Pre-Health Professions Program and is herself a longtime hospice volunteer.
Everyone deserves good end-of-life care, and residential homes for the dying ensure that people with little in the way of resources can get it. If anything, we need more of these homes — and more volunteers to keep them running.
CARE was initially geared toward students planning careers in health care.
The idea, Weisse told me, was to give undergraduates who might one day treat dying patients a better sense of how to communicate with and care for those with no hope for recovery. These days, CARE is open to any student with an interest in end-of-life care and a willingness to commit to the research project.
The Joan Nicole Prince Home is bright and cheery, with a back porch, meditation garden, living room and kitchen where executive director Amanda Neveu is baking cookies during my visit with Cullen. The home can accommodate two patients at a time, and each have their own bedroom and bathroom.
Neveu told me that residents — neither of whom are able to speak to me — enjoy speaking with younger people.
“It’s a legacy thing,” she said. “They want to share their stories and have them live on.”
Cullen is planning to go to medical school, as is Nurupa Ramkissoon, a 19-year-old Union College junior and Schenectady High School graduate who has spent her summer volunteering at the Joan Nicole Prince Home through the CARE program.
“It’s definitely been a little sad,” Ramkisson said. “The people who come here are very sweet, and you spend so much time with them. … There’s one resident who likes teaching, and she’s teaching us how to cook. It’s making her feel comfortable, like it’s her home.”
Weisse said her goal is to “cultivate a community of compassionate caregivers,” which sounds like a good goal to me.
At some point, every one of us is going to need a compassionate caregiver, and training students to step into this role could have lasting benefits.
Weisse believes she has created a program that could be implemented at residential homes for the dying all over the country.
“My hope and my dream is that this can spread,” she said.
After Michael Draper was diagnosed with a rare brain disease, his husband retired to take care of him full-time
By DAVID TAFFET
Michael Draper describes the condition he’s been dealing with for seven years as a “designer disease.” His husband, Terry Wicks, said that when they finally received a diagnoses, “the bottom dropped out of our world.”
Draper went almost two years before receiving a diagnosis of MSA — multiple system atrophy — a progressive neurodegenerative brain disorder that results in death.
Wicks has become his full-time caregiver.
MSA is often misdiagnosed as Parkinson’s Disease, but it seems to be more related to other diseases like PSP and Alzheimer’s characterized by a build up of certain proteins in the brain. Wicks explained that with MSA, the proteins needed to transmit signals from one cell to another seem to crumple and block transmission. As that happens, brain cells die.
Functions that are automatic — maintaining body temperature, swallowing, breathing, eliminating waste — stop working. Speech is affected. Muscle coordination deteriorates. The person with MSA becomes unable to take care of himself.
In 2013, the couple was living in California. Draper was an executive with Yahoo. Wicks was an MRI technician.
Wicks remembers asking his husband one day, “Why are you so clumsy lately?”
After a year of a variety of symptoms presenting themselves and several doctors unable to diagnose what was wrong, they went to Stanford for a diagnosis. After almost a year of visits, their doctor told them that she was waiting for one more symptom to appear. When it did, she confirmed MSA.
Symptoms appear when a person is in his or her 50s. Draper was 52 when they first recognized something was wrong. Those manifestations progress for five to 10 years.
New drugs are being tried to halt progression, but Wicks said his husband’s condition was too advanced for the medications to work. And because it takes so long to diagnose, most people have progressed beyond the point where these medications will help.
Four years ago, both men had to stop working. Draper was unable to work any longer so Wicks, who’s seven years older, retired to take care of him.
They decided to move back to Dallas to be closer to family. Their doctor at Stanford told them Dallas was a perfect choice because a colleague of hers had recently opened an MSA clinic at UT Southwestern, so Draper would receive top medical care.
Wicks made a trip by himself and purchased a house in Garland. He said it was the only time in their 29 years together that he had bought a house without his husband.
Wicks describes himself as a planner. So before leaving, he had planned what they needed in a house. He found one in Garland that fit his needs — a 1980s one-story ranch without any stairs or steep inclines that could be outfitted for their needs.
Among the work needed on the house was a complete bathroom redo. They replaced the tub with a walk-in shower fitted with a large tiled seat and an entrance without a step so that a wheelchair can roll in.
Because someone with MSA eventually has trouble turning around, Wicks found something he calls a pivot disk, sort of a lazy susan for people. From his wheelchair, Draper can stand and Wicks rotates him 180 degrees so he can sit in the shower or on the toilet.
Wicks said a person who needs this level of care loses all personal dignity and they’ve worked to keep Draper as independent as possible as long as possible. When he couldn’t brush his own teeth with a regular brush, they got an electric toothbrush.
Draper joked that he could still use a razor as long as his husband didn’t mind seeing him with slash marks all over his face. An electric razor allows him to continue shaving himself for now.
While they still are able to make a trip to the hair salon to get his hair cut, their hairdresser said he’d come to house once he can’t get out any longer.
Until recently, Draper had been using mostly a walker. Lately, he’s less able to make it around the house that way, and he’s begun relying more on his wheelchair.
Over the last few weeks, Wicks said he’s also begun having to use a catheter in order to urinate.
Draper said he feels guilty that he’s putting his husband through this, but Wicks wouldn’t have it any other way.
To help them deal with their situation, they go to support groups. Spouses taking care of their spouses compare, commiserate and share. That’s how he learned about the pivot disk. Those with the rare disorder that may affect only about 15,000 Americans don’t feel as alone when they get together.
Wicks is also careful about caregiver fatigue. Draper’s parents will take care of him for a week while Wicks takes a trip to the Seattle area where the couple lived for a number of years to help decide if after his husband’s death, he wants to move back there.
Draper encouraged his husband to take the trip. This way, he can participate in making future plans even if he won’t share them himself. He wants to know his husband will be all right and will return to having a life beyond caregiving.
Wicks said he still is able to leave Draper alone for an hour to run out to the store for groceries. As Draper’s condition deteriorates, Wicks said he’ll have to hire someone to come into the house to relieve him so he can do errands.
Caregiving that includes everything from personal care to doing all of the housework is a full-time job, Wicks explained.
“Unless you’ve done it, you have no idea how much it entails,” he said.
In addition to the physical labor, caregiving involves stress. Wicks described what he’s going through as anticipatory grief. Most people don’t grieve until their spouse is gone, and Draper has already outlived original projections for his life expectancy with MSA.
Wicks doesn’t know if the grieving he’s going through now — imagining what life will be like without his husband — will facilitate the grief he’ll feel after his husband’s death or if he’ll experience the loss he’s expecting all over again.
But that anticipatory grief also propels him to make the best life he can for both of them. Draper still has his sense of humor even as communicating grows more difficult. But as they look at each other and tell their story wishing it was headed toward a different ending, there’s a contentment and bliss in their just being together.
Hospice and palliative care physician Bruce (B.J.) Miller has made it his mission to help people “live well in the face of death.”
A hospice and palliative care physician at the University of California Helen Diller Family Comprehensive Cancer Center and former executive director of the Zen Hospice Project, Miller speaks nationally about end-of-life care, including the benefits of hospice and palliative care, and was featured in the Netflix documentary short film, End Game.
His new book, A Beginner’s Guide to the End: Practical Advice for Living Life and Facing Death, co-authored with journalist Shoshana Berger, is designed to educate the public about the options and obstacles that patients and families encounter at the end of life.
Miller’s has experienced palliative medicine both as a clinician and as a patient. An accident during his college years resulted in the amputation of one arm below the elbow and both legs below the knees.
“Part of the reason that I wound up becoming a doctor is that I came close to death in my own life, earlier than expected and in a dramatic enough way that I had little choice but to sit up and take notice,” Miller wrote in the book.
Miller spoke with Hospice News about perceptions of death in our society and its influence on patients’ choices, including hospice election, how patients should be cared for at the end of life, as well as the policy, practical and financial considerations that can impact that care.
“Hospice is a business too, and is affected by the same mundane staffing issues as any other: Illness, vacations, car trouble. The difference here is that a long wait for a bad latte will never be comparable to a late nursing visit when you are in desperate need for help,” Miller and Berger wrote in the book. “The hospice system is a part of our stressed health care system and that means it is stressed too. Burnout and turnover are significant problems across the industry; meanwhile, training programs struggle to impart the sort of knowledge and grizzled experience that good patient care requires.”
Regarding your book, A Beginner’s Guide to the End, what factors led you to decide that a resource like this was needed?
Being a clinician working in the hospice and palliative care space, I see patient after patient and family after family languish and suffer due to lack of information. This is certainly true anywhere in health care, but especially in our field because our explicit mission is to ease suffering. And this has proven very tricky. Most people don’t know what palliative care is. Many people know what hospice is, but they have so many misunderstandings of it.
I felt there was a need to get a general book out there to cover the waterfront, the hope being that essentially that we could raise the floor. We are not going to blow off the ceiling, but at least we can raise the floor and level the playing field so most everybody has some access to sound, up-to-date information. That was the impulse.
At several points in the book it’s mentioned that there is a kind of taboo around the topic of death. How do you think that influences people’s choices at the end of life, including electing hospice?
Our language gives us away. We have this old-fashioned notion that life is a fight against death, as though death were a foreign invader instead of a natural thing that is completely entwined with life.
We talk about death as a failure. In medicine we say, “He failed treatment.” That they “lost the battle,” and so forth. So we find all these exotic ways to keep the subject at a distance, and in daily life it has become easier and easier to become distracted from this. And it means that so many people wait way too long to elect hospice. And if they do enter hospice at all, it’s often in the final days where there is not much time to do all that we can to bring life to a close and provide some comfort.
Even beyond the election of hospice I think if we built awareness of our mortality into our daily lives, my guess is that we’d be much kinder to ourselves and to each other and much more appreciative of the life we have while we have it.
How do you see the hospice and palliative landscape changing? How you think the space could be different five years from now?
My hope would be that medical training in general absorbs the principles of hospice and palliative medicine and drives this kind of care earlier into the picture. Just about any clinician of any stripe should have some kind of basic facility with these concepts — eventually 100% of their patients are going to die.
My hope is that our workforce grows to meet the rising demand, and that payment gets worked out so people are incentivized to pursue careers in this important field. From a policy standpoint, hopefully there will be some legislation passed promoting training for hospice and palliative care.
I do think we in the field also really have to take quality seriously. We used to be able to just absorb the idea — it was just a fact that hospice in particular provided superior quality care as a medical model — and that’s still largely true. But we have to be careful, it’s not just about getting more people into the field; we have to keep our eyes on quality.
Do you think that current payment models for hospice, in particular the Medicare Hospice Benefit, are copacetic with the mission of providing multidisciplinary person-centered care in accordance with patients’ goals and wishes for end of life?
I think in general the hospice benefit does a very good job. I think its sticking points are the requirement that patients have six months or less to live and the idea of all the things that you can’t do while you are on hospice.
Those things made sense in 1982, but they don’t make much sense anymore. For example there are a ton of treatments that might be considered life extending that are actually palliative in nature. I see a lot of patients who are fully aware of all these trade offs and forestall their hospice election because they want access to certain treatments that could maybe help them live longer but also could make them feel better.
So those two sticking points are ripe to be revisited. Otherwise I think the hospice benefit is very sound, but I wonder how much longer the hospice benefit will look like the hospice benefit of today.
How do you feel about a possible Medicare Advantage carve-in for hospice?
I am not a policy expert, and there may be some counter arguments. but I wonder what the unintended consequences of that would be.
Right now Medicare sets the guidelines, and therefore there is a centralized power and policy hub. In sending the hospice benefit to private companies, will Medicare Advantage plans be allowed to dictate their own hospice benefit? If so, I have to imagine quality would go down due to cost-cutting measures which ultimately would also be quality-cutting measures.
You have spoken about how the health care system has diseases rather than people at its center. Do you think that is starting to change and how can the health care community accelerate that change?
I believe it’s starting to change in that the phrase “patient-centered care” is pretty well known and recognized, and I don’t hear anyone arguing against patient-centered care. So I think there’s an opening dialogue around it.
But I also watch some of my medical colleagues roll their eyes at it, and for good reason: Our population, health, and disease and treatments are so complex that it’s practically impossible for patients to make an informed decision, because we haven’t done a very good job of educating them. So it’s unrealistic to say that we can do whatever the patient wants.
What it is realistic is a shared decision-making model in which your clinician is your advocate and together you are working on a plan that’s realistic for the options in front of you, and together you make decisions. I think that’s the golden chalice we are trying to find.
A good example is that if you were to follow patient satisfaction surveys — if those were the gold standard of a patient-centered system — data show that patients prefer doctors who prescribe more medications because that feels like their doctor cares, but more medications is not always the best clinical choice.
That’s a case in point where it’s much more complicated than the satisfaction of the patient or the family, so I think the refinement here is to elevate the patient’s voice in the decision-making process and do the listening on our side as clinicians and encourage patients to speak up for what’s important to them, and together move forward. That is how things should work.
One of the most pervasive barriers to bringing patients into palliative care and hospice is awareness. Most people simply don’t know what these things are. What can hospice and palliative care providers do to move the needle on that issue?
No one seems to understand the difference between hospice and palliative care, and I wonder what policy could come along to help smooth out these false divides. I keep waiting for someone to organize a kind of mass public service announcement, explaining to the public what the solutions are and explaining the field.
As a clinician I am explaining the distinctions to people all the time, and I struggle to do it in a succinct manner; so I think that you need some real communications expertise. It’s a very tricky and complicated communications challenge to distinguish between these concepts in a way that is understandable and relatable, especially when for a lot of people it’s inborn to want to look away.
I would love to see some sort of mass public communication effort. That would go very far even among the health care community. Many of my doctor and nurse colleagues themselves couldn’t tell you the difference between hospice and palliative care. That is very common, so we have a massive communications problem that will take a multimillion dollar effort to get past.
You have spoken about the need to bring intention and creativity into dying. Where does hospice fit into that?
Dying is way bigger than a medical event. Hospice begins with a conversation about what is important to the patient and what is not important to them, and just the nature of that conversation helps people to live with intention.
You help and encourage them to think through what is important, what can they live with, what can they live with, coming to terms with the finitude of their time, and then you can work from there and to some level design your days. Hospice facilitates those conversations all the time.
I think the creative spark is a way of life, a way of thinking in which daily life is a creative act, including at the end of life. We are all improvising all the time, bobbing and weaving, checking our plans versus the reality on the ground. Creativity often flows from reaction to limitations, and this is our limitation: We don’t have endless time.