Mary was dying. As her children gathered at her bedside, she began to cradle a nonexistent baby. She cooed and cuddled it in her arms, showing a happiness that was at odds with her physical suffering. Her children turned to the doctor, concerned that their mother was hallucinating. But he encouraged them to let her act out a scene that only made sense to her.
Later, they learned that Mary had delivered a stillborn baby years before she had her other children. What had seemed like a bizarre hallucination actually seemed to help address a trauma she had held inside for years. She died peacefully soon after.
Christopher Kerr, the hospice doctor who witnessed Mary’s actions, credits her with helping change his view on death.
It turns out that similar visions, dreams and end-of-life experiences are common parts of the dying process. Kerr describes what those visions are like and how they help people prepare for the end in “Death Is But a Dream: Finding Hope and Meaning at Life’s End,” written with Carine Mardorossian.
Kerr has interviewed thousands of dying patients about their visions and dreams, which often include dead family members or pets or which recreate past scenes from which patients extract meaning or healing. Patients describe seeing dead family members in the room, feeling a comforting presence nearby, or tying up unfinished emotional business relating to past slights and traumas.
The book is a challenge to doctors, whom Kerr encourages to honor and listen to the dying.
“We need to bring doctors back to the bedside, to their roots as comforters of the dying rather than as mere technicians trying to extend life at all costs,” he writes.
But it beckons to readers, too, encouraging them to open up to how dying patients make meaning of their own lives. By listening to patients, says Kerr, “dying becomes less about death than about life’s resilience.”
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.
Susan Saran was diagnosed with frontotemporal dementia, a progressive, fatal brain disease. After suffering two brain hemorrhages, Saran signed an advance directive for dementia, a controversial new document that instructs caregivers to withhold hand-feeding and fluids at the end of life. She wears a chain bearing instructions that she not be resuscitated.
When she worked on the trading floor of the Chicago Board Options Exchange, long before cellphone calculators, Susan Saran could perform complex math problems in her head. Years later, as one of its top regulators, she was in charge of investigating insider trading deals.
Today, she struggles to remember multiplication tables.
Seven years ago, at age 57, Saran was diagnosed with frontotemporal dementia, a progressive, fatal brain disease. She had started forgetting things, losing focus at the job she’d held for three decades. Then tests revealed the grim diagnosis.
“It was absolutely devastating,” said Saran, 64. “It changed everything. My job ended. I was put out on disability. I was told to establish myself in a community before I was unable to care for myself.”
So Saran uprooted herself. She sold her home in 2015 and found what looked like an ideal place: Kendal at Ithaca, a bucolic retirement community in rural New York whose website promised “comprehensive health care for life.”
And now, she’s fighting with that community over her right to determine how she’ll die ― even though she has made her wishes known in writing. Such a fight could ensnare millions of Americans with dementia in coming years.
In 2018, after two brain hemorrhages, Saran conferred with a lawyer and signed an advance directive for dementia, a controversial new document created by the group End of Life Choices New York that instructs caregivers to withhold hand-feeding and fluids at the end of life to avoid the worst ravages of the disease.
“It’s not something that I am willing to endure,” she said. “I don’t want my life prolonged beyond the point where I’m participating in life.”
But when Saran submitted the document to Kendal at Ithaca, the New York continuing care retirement community where she has spent more than $500,000 to secure her future, officials there said they could not honor her wishes.
In a letter, lawyers told Saran that the center is required by state and federal law to offer regular daily meals, with feeding assistance if necessary.
There’s no provision, the letter said, for “decisions to refuse food and water.”
It’s a cruel quandary for Saran and other Americans who have turned to a crop of dementia directives created in recent years. Even when people document their choices ― while they still have the ability to do so ― there’s no guarantee those instructions will be honored, said Dr. Stanley Terman, a California psychiatrist who advises patients on end-of-life decisions.
“It is, in my opinion, a false sense of security,” Terman said.
That may be especially true for the 2.2 million people who live in long-term care settings in the United States. People with dementia are most likely to die in nursing facilities, according to new research from Duke University and the Veterans Affairs Boston Healthcare System.
“If you’ve got the resources, where you’ve got family and paid caregivers at home, you’re all set,” said Dr. Karl Steinberg, a California geriatrician and hospice physician who has written extensively about dementia directives. If you’re living in a facility, he added, “it’s not going to happen.”
One key question is whether patients with dementia ― or those who fear the disease ― can say in advance that they want oral food and fluids stopped at a certain point, a move that would hasten death through dehydration.
It’s a controversial form of what’s known as VSED ― voluntarily stopping eating and drinking ― a practice among some terminally ill patients who want to end their lives. In those cases, people who still have mental capacity can refuse food and water, resulting in death within about two weeks.
Many states prohibit the withdrawal of assisted feeding, calling it basic “comfort care” that must be offered. Only one state, Nevada, explicitly recognizes an advance directive that calls for stopping eating and drinking. And that’s via a little-known law that took effect in October.
Critics of such documents, however, say they could lead to forced starvation of incapacitated people. The directives may be biased, reflecting a society prejudiced against age, disability and cognitive change, said Dr. James Wright, medical director of three long-term care facilities in Richmond, Va.
He’s the lead author of a recent white paper advising facilities not to honor dementia directives. Based on his years of clinical experience, Wright said many people with dementia become content with their situation, even when they never thought they would be.
“To enforce an advance directive on someone who may have had a complete turnaround on what they think of a life worth living is unethical and immoral,” Wright said.
The dementia directives published in the past few years are aimed at filling what experts say has been a major gap in advance-care planning: the gradual loss of capacity to make decisions about one’s care.
One version, published in 2018 by Dr. Barak Gaster, a professor of medicine at the University of Washington, has been downloaded 130,000 times after it was mentioned in a New York Times story and continues to be retrieved about 500 times per week.
“This is an issue that people have really thought a lot about,” Gaster said. “They worry about it a lot. They’re so eager and excited to have a structured opportunity to make their wishes known.”
Traditional advance directives focus on rare conditions, such as a persistent vegetative state or permanent coma, Gaster said. “And yet the No. 1 reason a person would lose ability is dementia,” he added.
As the U.S. population ages, more people ― and their families ― are grappling with dementia. By 2050, nearly 14 million Americans aged 65 and older may be diagnosed with Alzheimer’s disease.
“We are right now experiencing the very first upswing of the giant wave of dementia that’s heading our way,” Gaster said.
Saran is on the crest of that wave. Divorced, with no close family, she turned to Kendal ― with its 236 independent units and 84-bed health center ― as her final home. During her four years there, she has noticed some decline in her mental clarity.
“Even some of the simplest mathematical problems, like even seven times seven, I can’t think of it now,” Saran said.
Still, she is able to manage her affairs. She cooks her own food and cares for her three cats ― Squeaky, Sweetie and Pirate, a one-eyed tabby. A longtime Buddhist, she often drives to a nearby monastery to practice her faith.
In late summer, Saran invited visitors to her small cottage at Kendal, where tapestries hang on the walls and bookshelves are filled with tomes on religion, death and dying.
Frontotemporal dementia affects about 60,000 people in the U.S., and patients often die within seven to 13 years, but Saran’s disease appears to be progressing more slowly than expected.
“I think I have great capacity,” said Saran, who wears her silver hair long and favors jeans, linen shirts and turquoise jewelry.
She chain-smokes, lighting up the Seneca cigarettes she buys for $3 a pack from a nearby Indian reservation. She thought about quitting but decided it wasn’t worth the effort and continues to indulge her habit. “If you had my diagnosis, wouldn’t you?” she said.
When Saran was hospitalized after her strokes, she suddenly understood what losing her abilities might mean.
“I realized, oh, my God, I might get stuck in a situation where I can’t take any independent action,” she recalled. “I better make sure I have all my paperwork in order.”
She was stunned to learn it might not matter, even after her local lawyer, Chuck Guttman, drafted health care proxy documents and a power of attorney.
“I thought this was it,” she said. “I thought I’d move here and everything was taken care of, everything was settled. And now it’s not.”
Laurie Mante, Kendal’s executive director, declined to comment on Saran’s situation, even when Saran authorized her to do so.
“We recognize the great complexity in balancing our residents’ wishes with what is required of us,” Mante wrote in an email. “We have a dedicated team who works to balance those interests, and, when appropriate, work with our residents and their families to seek alternative paths.”
Saran said no one from Kendal has reached out to discuss an “alternative path.”
Not all dementia directives include instructions about assisted feeding. Gaster said he and his colleagues had “heated conversations” before deciding to leave that issue off their popular document.
Instead, he said, his option helps more people by addressing general goals of care for each stage of the disease. The most important thing, he said, is for people to consider their choices and share their desires with their loved ones.
The debate, Gaster said, boils down to whether assisted feeding is “basic support” or “a medical intervention that can be declined in advance.”
“There’s still a very wide perspective of viewpoints on that,” he said.
Backed by statute and practice, facilities say they are bound to offer food to all residents willing to eat, and to assist with hand-feeding and fluids if a person needs help.
The controversy centers on the definition of those terms.
Wright says late-stage dementia patients who show any interest in food ― a flick of the eyes, grunting or gestures, opening the mouth ― should be fed until they refuse it. Steinberg and others contend the default should be “don’t feed unless they ask for it.”
It’s always going to be “somewhat of a guess,” Wright acknowledged, about whether hand-feeding someone is help ― or force.
“I’ve not seen any guidelines that can faithfully give good, unbiased guidance,” he said. “I feel that I personally can determine when food means something to my patients and when it doesn’t.”
The new crop of dementia directives was inspired, in part, by high-profile cases of dementia patients who were spoon-fed against their apparent wishes. In Oregon and British Columbia, courts ruled that food and water were basic care that could not be withdrawn.
But so far, there’s been no court case that says a clear advance directive for VSED “may or must be honored,” said Thaddeus Mason Pope, a professor at the Mitchell Hamline School of Law who studies end-of-life decisions.
Pope said he has heard of many people who move out ― or their families move them out ― of long-term care facilities to avoid assisted feeding in the last stages of dementia.
Saran has considered that, too.
“I should probably just leave,” she said, although that would mean losing the nonrefundable investment she’s already made. “I think about that every day.”
But then what? Hospice might be a solution, but only if there’s room when she needs it, she said.
Saran said her situation should be viewed as a cautionary tale. She wishes she’d asked more questions, insisted on answers about exactly how she would die once her dementia progressed.
“I didn’t realize I was signing away my right to self-determination,” she said. “I am appalled that my future demented self takes precedence over my competent current self.”
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.”
Kerr has interviewed thousands of dying patients about their visions and dreams, which often include dead family members or pets or which recreate past scenes from which patients extract meaning or healing. Patients describe seeing dead family members in the room, feeling a comforting presence nearby, or tying up unfinished emotional business relating to past slights and traumas.
