Diane Rehm poses for a portrait at her home in January. After more than three decades and thousands of programs, she’s stepping away from the broadcast microphone.
By Amy Kepferle
“My mother begged to die,” Diane Rehm writes in the preface of her new book, When My Time Comes: Conversations about Whether Those Who Are Dying Should Have the Right to Determine When Life Should End.
“There was no hope of recovery,” she continues. “There was nothing more they could do to ease her pain or to keep her comfortable. She died suffering.”
Rehm, a beloved National Public Radio talk show host and bestselling author, wondered why she’d had to watch her mother endure the horrific effects of non-alcohol-related cirrhosis for so long, and why she didn’t have the right to choose when she’d had enough.
The subject again became personal in 2014 when her husband of 55 years, John Rehm, decided to end his life when the side effects of Parkinson’s disease became overwhelming. He couldn’t use his hands, could no longer feed himself or use the bathroom on his own, and slept for most of the day.
“Because John could not receive medical aid in dying, he had to starve himself and go without medication for 10 days, until he died,” she relates during a chapter focusing on an interview with palliative care physician, internist and geriatrician Christina Puchalski. “I as his wife could do nothing but watch him suffer.”
Puchalski’s take on Rehm’s story is an interesting one. Although she has plenty of compassion for those who are facing their final journey, she has concern that in states where assisted suicide is legal—like Washington, Oregon, Maine, Vermont, California, New Jersey, and Colorado—people might be too quick to seek medical aid to quicken their deaths. She believes palliative care and hospice care can help with pain and symptom management, and can also be done with dignity.
“Are we giving a message that when you get to that point, there’s not a lot of opportunity for meaning and purpose and joy?” Puchalski asks.
At 83 years old, Rehm is a clear proponent of the right-to-die movement. But in When My Time Comes, she uses her interviewing prowess to explore the topic in ways that go beyond a simple “yes” or “no.” She questions terminal cancer patients—one of whom moved to Oregon so she’d be able to end her life on her own terms—and widowed spouses, doctors, death educators, reverends and Roman Catholic priests, constitutional law professors, attorneys and politicians for their opinions.
It’s heady reading, especially when hearing from those who know they’re running out of time. But it’s also a reminder that life is fleeting, and that it’s better to let your family and loved ones know what you want before its final chapter.
At the end of the book, Rehm even talks to her grandson, asking him to record their conversation on his iPhone for posterity. She then tells him that if she’s terminally ill and there is no reasonable expectation of her recovery from mental or physical disability, to let her die and not be kept alive by artificial means and heroic measures.
During “A Conversation with Diane Rehm” Tues., Feb. 11 at Sehome High School, the retired radio personality will be in conversation with local author Phyllis Shacter, who—like Rehm—watched her spouse choose to die via Voluntary Stopping Eating and Drinking (VSED) rather than live into the late stages of Alzheimer’s. The discussion is sure to be a fascinating one, and may help give attendees a clearer look at the bigger picture.
Humans have had to face death and mortality since since the beginning of time, but our experience of the dying process has changed dramatically in recent history.
Haider Warraich, a fellow in cardiology at Duke University Medical Center, tells Fresh Air‘s Terry Gross that death used to be sudden, unexpected and relatively swift — the result of a violent cause, or perhaps an infection. But, he says, modern medicines and medical technologies have lead to a “dramatic extension” of life — and a more prolonged dying processes.
“We’ve now … introduced a phase of our life, which can be considered as ‘dying,’ in which patients have terminal diseases in which they are in and out of the hospital, they are dependent in nursing homes,” Warraich says. “That is something that is a very, very recent development in our history as a species.”
Prolonging life might sound like a good thing, but Warraich notes that medical technologies often force patients, their loved ones and their doctors to make difficult, painful decisions. In his new book, Modern Death, he writes about a patient with end-stage dementia who screamed “kill me” as a feeding tube was inserted into his nose.
“This is probably one of the encounters that I had in residency that I have been unable to shake from my memory,” Warraich says. “I think if you ask any physician, any nurse, any paramedic, they’ll have many such stories to tell you.”
Interview Highlights
On the importance of having a healthcare proxy, living will and advanced directive
One of the biggest problems that we face in not only modern society, but in societies of olden times as well, is that people have always been very afraid to talk about death. In many cultures it is considered bad luck to talk about death and it is thought to be a bad omen. I think to some extent that extends to this very day. But … I think having a living will, having an advanced directive, or perhaps most importantly, having a designated healthcare proxy, someone who can help transmit your decisions to the team when you’re not able to do so, is perhaps the most important thing that we can do for ourselves as patients and as human beings.
On giving CPR and knowing when to stop giving CPR
One of the things about CPR, Terry, is that almost everyone in medicine knows how to start CPR, when to start CPR, really what to do in CPR under even complex situations, but the one thing that almost no one really teaches us, and there are no guidelines for, is when to stop CPR. I think in some ways that is one of the biggest challenges that we in medicine face all the time. …
I was actually working in the hospital last night and it was about 3 in the morning and I was called by one of my other colleagues who was another cardiology fellow, he asked me, “Haider, I need your help. I have a patient that we are doing CPR on,” and he wanted some help from me. So I walked over to the intensive care unit, and the patient was in her 60s. … There was an entire team in the room doing chest compressions on this woman, and they had been doing it for an hour and a half at that point, much, much, much longer than most CPRs last. …
At the same time while this CPR was ongoing, the patient’s family member, her daughter, was outside the room, and she was crying. … Even though we could give her all the information … that wasn’t perhaps what she was looking for, because what we were asking her to think about or to do was one of the hardest things anyone has to ever bear, which was, “Do you want us to stop CPR?” And that’s the type of thing that I don’t think any of us can ever prepare for, especially when it’s our parent that’s involved.
On why he wrote a book about dying
I really wanted to find answers to some very, very basic questions, like what are the implications of the sort of life extension that we have achieved? What is the role of religion, not only a patient’s religion but a physician’s religion when it comes to dealing with the end of life? How is social media affecting how people experience the end of life? …
So many times I’ve found myself in the room where there are people who were so much more experienced in life than I was, yet knew so little about death and dying. And so I wanted to write a book so that people could go into those really, really difficult places and feel like they’re armed with information, that this isn’t a completely foreign territory for them and that in some way could help them navigate and deal with the sort of difficult situations that lay ahead for them.
It is very unfortunate that health is so politicized in this country, because it doesn’t have to be. Health and wellness aren’t red or blue, and they shouldn’t be, but unfortunately that is where we are. I hope that when policies are being enacted in DC, patient’s voices, those who have benefited from the ACA, those who have gained insurance, those voices are not lost in the midst of all of this political activity.
On immigrating to the U.S. from Pakistan
Dr. Haider Warraich has written medical and opinion pieces for The New York Times, The Wall Street Journal and The Atlantic.
I came to the United States in 2010 and [until now] have only lived in an America in which Barack Obama was the president. I think in some ways Trump’s victory has really shaken me, because of how invested I was in the idea that America is a special place, it’s a truly multicultural society. And I’m still trying to understand, I think like so many others, just exactly what happened. Especially as a writer and as a physician I’ve tried to separate myself from my identity as a Muslim. I’d rather be known as a physician/scientist/writer who happens to be Pakistani, rather than a young Pakistani Muslim immigrant who happens to be a doctor and a writer, but I don’t know. Given how things are changing, I’m not even sure if I’ll be able to set that narrative for myself. That’s a scary thought — to live an identity that is so politicized even when you wish for it to not be.
As a child, confronting my mortality was terrifying. Now it is an opportunity.
Mr. Yancy is a philosopher and professor.
By George Yancy
As a young boy, I recall very clearly telling my mother with an innocent defiance that I wished that I had never been born because I will die someday. I can’t recall her response, but I’m sure it worried her and left her feeling hurt. But I was frustrated, angry, afraid. While I knew that people died, it had suddenly dawned on me that I would be among them, that I will die someday. It was an epiphany — one I would rather have not had. I recall thinking, “I didn’t sign up for this. Who is playing this terrible joke on me?”
Strange, I realize, but there I was — a child, elated to be alive, feeling the warmth of the sun on my brown skin, playing with friends in the streets, eating ice cream, celebrating birthdays, enjoying unconditional love shown to me by my mother and my older sister. Why did I have so much joy and shared love just to someday have it all taken away, gone forever? And I understood “gone forever” to mean never ever existing again. Done! Kaput! It made absolutely no sense to me.
I experienced the fact of my death as a cosmic slight. I could not get it out of my head. Even at that young age, I began to feel the heavy weight of my finitude. I couldn’t put it down, even though I wanted to. Death was now too close.
It was dreadful. That sense of unthinking longevity, invulnerability, cavalier confidence — hell, just being a child — gave way to a deep and frightening reality that I could not control. The childlike omnipotence collapsed and left me facing an abyss. The abstract fact of death had become personal. I had come to realize that not a single moment is guaranteed, not another breath, another blink of an eye, another hug from my mother or clash with my sister.
As I grew older this feeling of existential dread stayed with me — of being thrown into existence without any clear sense of why we’re here, of wondering whether or not God exists, whether or not the cosmos has any meaning beyond what we give it, whether or not we have immortal souls, whether there is anything to be discovered after death or whether death is the final absurd moment of our being. I was like the French-Algerian existentialist Albert Camus, who wrote of having “conscious certainty of a death without hope.”
As an adult, this uncanniness goes unabated; it has not stopped. There are times when, like the 17th-century thinker Blaise Pascal, I feel trapped between two infinities of meaninglessness. In his unfinished work, “Pensées,” Pascal writes, “When I consider the short duration of my life, swallowed up in an eternity before and after, the small space I fill engulfed in the infinite immensity of spaces whereof I know nothing, and which know nothing of me, I am terrified. The eternal silence of these infinite spaces alarms me. I wonder why I am here rather than there, now rather than then. Who set me here? By whose order and design have this place and time been destined for me?”
The fact of death is like a haunting. It frequents me, entangled in everything I do: It’s just beneath my pillow as I sleep, strolling next to me as I casually walk from one class to the next, inserting its presence between each heart beat in my chest, forcing its way into my consciousness when I say “I love you” to my children each night, assuring me that it can unravel the many promises that I continue to make, threatening the appointments that I need to keep. This sense of haunting is what the Harvard professor Cornel West calls the “death shudder.” Of this “shudder” in the face of death, he writes, “Yes, dread and terror were involved, but also perplexity. Exploration. Where does nonexistence take you? What does it mean to be stripped of your own consciousness? How do we live with the idea that we are always tantalizingly close to death? At any moment the bridge can collapse.”
I continue to shudder. Yet there is something about facing the fact of death that invites us to double back, to see our existence, our lives, differently. The scholar Mark Ralkowski, reflecting on Martin Heidegger’s notion of “being-toward-death,” writes: “In rare moments, we can be returned to ourselves by an experience of anxiety (Angst), which disrupts the tranquillity of the everyday world by emptying it of its usual significance and meaning. In these moments, none of our projects or commitments makes sense to us anymore, and we see that we are committed to roles prescribed to us by das Man” — which means “the they” or “the crowd.”
I want my students to experience one of those “rare moments,” to consider the short duration of their lives. To get them to think differently about our time together, to value their lives differently, I make a resolute effort to remind my students that all of us, at some point, sooner or later, will become rotting corpses. That, I explain, is the great equalizer. No matter how smart, brilliant, wealthy, beautiful and fit you are, no matter how great your MCAT, LSAT or G.P.A. scores, no matter your religious or political orientation, we will all perish.
After hearing this, students will often become completely silent. There is a sudden recognition that something has been haunting our joy, our unquestioned and collective happiness, our sense of “permanence.” It is palpable. No matter how many times I’ve decided to remove the veil, the sting of our collective finitude continues to hit me, along with the reality of bodily decomposition and putrefaction. The unspoken reality of death, which is the haunting background of our lives, shakes my body; I mourn for me and my students, and humanity.
Yet a clarity emerges. My students and I see each other differently, perhaps for the very first time. We are no longer simply students and professor, but fragile creatures and mysterious beings who have been dying from the moment we were born in a universe with no self-evident ultimate meaning. Something as previously uneventful as sitting next to one’s fellow classmate takes on unspeakable value. That shared understanding, vulnerability and mutual recognition of collective destiny makes our time together even more joyful, even more precious.
I’m not sure if the “death shudder” will ever abate while I’m alive. And I am no closer to understanding the fact that I exist or why I must die. I don’t seem to be able to achieve the necessary adjustment, the solace of acceptance. In his “Tractatus Logico-Philosophicus,” Ludwig Wittgenstein writes, “It is not how things are in the world that is mystical, but that it exists.” Wittgenstein helps to give voice to something mysterious about our being: It is that we exist, and that we will die, which is so uncanny. It is that both life and death are inextricably braided together that elicits the shudder. And the shudder and the uncanniness point beyond mere facts. They function, at least for me, as gestures, as intimations of a beyond, that enthrall my soul.
So, sooner or later I will die. I’m assured that it will happen. I know that if you are reading this article 100 years from now, I will no longer exist. I will have paid the debt for the gift of being. Death is our collective fate. Yet so many of us fear to talk about it, fear to face it, terrified by the idea of nonbeing. But we must face our destiny, our rendezvous with death. Indeed, the concept of death is a deep and perennial theme in philosophical and theological-religious thought; it is one of the Big Questions. As the philosopher Todd May writes, “Of course, most religions don’t claim that we don’t die. But there is, for many religions, a particular sense in which we don’t really die.”
It is in this spirit of exploration that I will interview 12 deeply knowledgeable scholars, philosophers and teachers, one each month, about the meaning of death in their respective traditions, including Hinduism, Buddhism, Islam, Christianity, Zoroastrianism, Judaism, Jainism and others. I will be asking questions like: What is death? Why do we fear death? Is death final? Do we have immortal souls? What role does death play in how we ought to live our lives?
The objective is not to find definitive answers to these eternal questions, but to engage, as my students and I try to do in our classes, in a lively discussion about a fact that most of us would rather avoid, and move ourselves a little closer to the truth.
When people learn that I work with a hospice agency, many think I spend every day focused on death. In fact, we spend much more time focusing on quality of life and supporting what matters most to those we serve. This is one of the many lessons I learned from my mother as she was dying 15 years ago — a lesson that continues to inspire my life and my work.
My mother accepted her death with grace, and told those she loved that she loved them. She lived her final days at home, aligned with what mattered most to her.
Like my mother, most Americans expect their families to carry out their wishes for end-of-life care. However, 75% admit that they have never clearly articulated those wishes, and their children are often afraid to ask. As a result, while 80% of people say they would like to spend their final days at home with support, in reality, the vast majority die in institutions.
As hard as my mother’s death was for me as her daughter, I take great solace that we were empowered to support her wishes because she took charge of her own health care decisions.
Her actions also inspired me to consider and share what really matters to me for the end of my life — and all the days between now and an unknown then. Doing so made me feel lifted, lighter, and full of new energy for life. That experience in turn motivated me to help others make the most of their lives, and to prepare for their own future care.
In 2016, I joined Mission Hospice, with the goal of raising awareness of end-of-life issues within the areas of San Mateo and Santa counties. Mission Hospice was founded in 1979 by a group of nurses, neighbors, and friends who were dedicated to improving end-of-life care for their community — helping patients live their final months to the fullest by providing compassionate support to them and their families.
I believe deeply in the kind of care we can offer as a nonprofit hospice — which has become the rarity rather than the norm, both in California and nationally. Our commitment to patients over profit means we can offer alternative and complementary therapies that ease pain and increase quality of life. We can offer grief support for those in our community who need it. And, although hospice is a Medicare-covered benefit, we can serve patients regardless of their insurance or ability to pay. All of this thanks to the support of our incredible community of donors.
As a nonprofit, we also offer community education — opportunities to learn and talk about something we will all face. Every week, Mission Hospice hosts workshops, grief support groups, author readings, movies, and other opportunities to discuss life and death.
Together with local senior and health care nonprofits right here in Menlo Park, Mission Hospice led a coalition dedicated to creating a more compassionate community for people facing serious illness, death, and bereavement. Over the last few years, this group has offered dozens of free “Take Charge” advance care planning workshops throughout the Peninsula, helping people consider and express what’s most important to them, and then doing all that’s possible to ensure that loved ones and medical professionals can support their wishes.
In teaching others that we can each have the power and courage to choose the kind of care we hope for, I am following the lead of my mother — who was quite frankly the last person I expected to learn this from. Facing the reality of our mortality isn’t easy stuff, and it’s much bigger than a form or a single conversation. Yet it can give both the living — and the dying — great freedom in the end.
We’re all in this life and death thing together. By talking about what we want, learning the facts, and supporting each other along the way, we can truly be part of a community that cares — about living and about dying well. In the end, what matters more than that?
Mary Matthiesen, a Menlo Park resident, is chief strategy and integration officer for Mission Hospice in San Mateo. She is the author of “Dying to Make a Difference: One woman’s liberating journey to heed life’s call after her mother’s death and the legacy that’s possible when we do.”
It’s mid-January. The post-holiday glow has most definitely worn off and I’m now leaning on my fave comfort food to help get me through winter. Yep, am here nibbling on some chocolate almonds while writing this to you because I’m about to dive into a touchy topic.
Let’s begin by saying…
Death is deeply ordinary. 100% inevitable. And as natural and necessary as being born.
As a society, we treat death like the enemy (instead of the goddess of wisdom that she is). We fight ‘til the bitter end, this “battle” that we won’t ever win. This battle against death (and the obsession with youth it creates) is seen everywhere in our science and culture.
Which means it can be heartbreaking to hear that a loved one facing death has decided to give up that fight. To accept what’s coming. To make peace with a battle they know they aren’t going to win. To refuse any more treatments. And sometimes, even to choose a medically assisted death.
M.A.I.D. stands for Medical Assistance in Dying and it’s been legal in Canada since June 17, 2016.
First, a few stats to set the scene. The total number of medically assisted deaths in Canada between December 2015 and October 2018 was 6,479 or roughly 1% of the estimated total deaths in Canada during that time.
It’s split pretty evenly between men and women. But those of us in urban centres are more likely to seek out these services.
There are a number of guidelines in place to make sure that MAID isn’t abused. You have to be “eligible” and of sound mind. Three doctors must all independently agree that you qualify. Currently, there’s a minimum 10-day waiting period to make sure this is really what you want. And you can change your mind – right up to the last second – if you want to.
But it’s still controversial.
MAID bumps up against our morals and ethics and religious beliefs. It asks us to think about how we want to live and more importantly how we want to die (if you even believe that you have the right to choose).
It can be agonizing to hear that a loved one is ready to die. Especially if we aren’t ready to let them go.
There’s a fantastic episode of Grace and Frankie (season 6 is out now!) called “The Party” where their friend has decided not to fight the cancer that’s returned. We watch Grace and Frankie navigate their friend’s request to throw an epic ‘exit’ party and help her die. The show deals with this subject with such compassion (and of course, their signature sense of humour) it’s definitelyworth watching.
So let’s talk this through, shall we?
HOW DO YOU SUPPORT A LOVED ONE WHO HAS CHOSEN MAID?
Acknowledge that this is NOT ABOUT YOU
Which is hard because their death most definitely impacts you. And your ego, once it’s recovered from its shock, will start wringing its hands and wondering what your life will look like without this loved one. It’ll be afraid of losing the person you were when you were with them. And your ego will most definitely not want things to change, or the pain that comes with change. It’ll want to avoid this at all costs. Even if it means asking your cherished one to extend their life, to keep fighting, just a little longer so you can avoid the pain and grief their death will bring.
Here’s what I want you to remember: it’s not about you (no matter how much it feels like it is). This is THEIR journey. Trust that they know what they need. And, deep down your soul knows it’s going to be okay. It’s going to hurt, yes, but it’s going to be okay. So listen to your soul.
Get help
For you. Find support for yourself so that you can show up for your loved one who has chosen MAID. Maybe this looks like talking to a trusted friend, therapist, or coach.
Establish rituals that will help YOU during the transition. What do you need? Maybe you can schedule some time off. Or, one of my personal favourites is hitting the yoga mat. Allowing movement and breath to begin to allow those emotions to move through me. Maybe you can light a candle for your loved one. Pray. Journal. Meditate. Walk. Do some kick-boxing. Take a bath. Let your intuition guide you. (more ideas for honouring your griefhere)
Empathize
Be a heart with ears for your friend or family member choosing medically assisted death. We can’t ever truly know what it’s like to walk someone else’s path. But we can listen with open hearts. Connect with compassion. And if the moment calls for it? Grieve together (more ideas on how to show up for someone who’s grievinghere).
Plan
If planning is your forte help them with plans for their funeral. Or a living funeral. Or a celebration of life service. Whatever they want. A big, loud, joyful party or intimate, sacred and peaceful. There’s no wrong way to do this.
The rituals and ceremonies we create around the ending of life aren’t just a reflection of our culture or beliefs. These rituals allow us to begin processing all the complex emotions that accompany grief. They help us to take meaningful action. To gather in community. Because action is necessary to heal from loss and helping plan their ‘exit’ party can be a beautiful offering.
Shift your perspective
This is gonna fall under the category of “easier said than done” advice. But what if you saw this time together (however much is left) as a gift?
When death is unexpected one of the things grievers want more than anything…is more time. Time to say I love you. Time to just be with the person. Even just one more day with their loved one. You’ve got that. Cherish it.
Honesty
Take time to ask the questions you have to. Resolve any conflicts. Ease any discomfort between you. Above all, have honest conversations because we certainly don’t have time for bullshit in our last days on earth. And if you can’t quite say it out loud – try writing it in a letter.
When we implore our loved ones not to give up, to keep fighting, we rob them of the opportunity to go peacefully on their terms. We take away the deep KNOWING they have about their approaching death and ask them to doubt themselves. We give false hope.
We’d never ask our family member or friend to live their life according to our terms. We can’t ask them to die on our terms.
If we loved them in life, even when life got messy (and really, when is it not messy?!) then we need to love them enough to make dying okay too.
“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.”
In his 1996 book about death, Herbert Fingarette argued that fearing one’s own demise was irrational. When you die, he wrote, “there is nothing.” Why should we fear the absence of being when we won’t be there ourselves to suffer it?
Twenty years later, facing his own mortality, the philosopher realized that he’d been wrong. Death began to frighten him, and he couldn’t think himself out of it. Fingarette, who for 40 years taught philosophy at the University of California at Santa Barbara, had also written extensively on self-deception. Now, at 97, he wondered whether he’d been deceiving himself about the meaning of life and death.
“It haunts me, the idea of dying soon, whether there’s a good reason or not,” he says in Andrew Hasse’s short documentary Being 97. “I walk around often and ask myself, ‘What is the point of it all?’ There must be something I’m missing. I wish I knew.”
Hasse, Fingarette’s grandson, turned the camera on the philosopher in the last months of his life. The two were very close—when Hasse was a child, Fingarette would invent stories and record them on tape to send to his grandson, who lived 300 miles away, so that he could listen to them before bed. “My grandfather was one of the most thoughtful men I’ve ever met,” Hasse told me.
Being 97 is a poignant film that explores the interiority of senescence and the struggle of accepting the inevitable. Hasse quietly observes the things that have come to define his grandfather’s existence: the stillness of time, the loss of ability, and the need to come to terms with asking for help. “It’s very difficult for people who have not reached a state of old age to understand the psychology of it, what is going on in a person,” Fingarette says.
In one scene, Fingarette listens to a string quartet that was once meaningful to his late wife. He hasn’t heard the piece since her death seven years earlier—“her absence is a presence,” he says in the film—and becomes overwhelmed with grief.
Hasse made the artistic choice to omit his voice from the film, so while he was filming the scene, he had to stifle the urge to comfort his grandfather. “It’s very difficult to watch anyone in that kind of pain and not be able to console them, especially someone you love so dearly,” Hasse said. “I found myself sitting just a few feet away from him, unable to reach out because there was a camera between us. All I wanted to do was put a hand on his shoulder, embrace him, be with him in his pain.” After what felt to Hasse like an eternity, the filmmaker handed his grandfather a tissue to wipe away his tears. The scene ends just before this happens.
Fingarette died in late 2018. Just weeks earlier, Hasse had shown him the final cut of the documentary. “I think it helped give him perspective on what he was going through,” he said. “He loved talking about what a mysterious process it had been to film all these little moments of his life and then weave them together into a work that expressed something essential about him.”
The day before he died, Fingarette uttered his final words. After spending many hours in silence with his eyes closed, Hasse said, his grandfather suddenly looked up and said, “Well, that’s clear enough!” A few hours later he said, “Why don’t we see if we can go up and check it out?”
“Of course, these cryptic messages are up to interpretation,” Hasse said, “but I’d like to believe that he might have seen at least a glimpse of something beyond death.”
In the film, Fingarette admits that there “isn’t any good answer” to the “foolish question” of understanding mortality. “The answer might be … the silent answer.”
