I don’t know what your definition of a true friend is, but mine would definitely include “willing to help me die.”
The Netflix feature “Paddleton” is a laconic road movie about the relationship between the terminally ill Michael (Mark Duplass) and Andy (a restrained, terrific Ray Romano), his upstairs neighbor and best friend. Not much happens. Except life and death. Michael has the good fortune to have metastatic cancer in California, which means he can exercise the state’s right to die option. “I don’t want to do it alone, and I was hoping,” he tells Andy as they casually nibble cashews one afternoon. “You would help me out.”
The concept of how to have a decent death has provided plenty of fictional inspiration over the years. Sixteen years ago, Ryan Murphy’s “Nip/Tuck” did a haunting arc about a woman with late stage breast cancer enlisting her lover, a doctor, to assist her in making a peaceful exit. The Oscar-winning 2012 “Amour” similarly explored assisted death as an act of love. And just two years ago, “Grace and Frankie” introduced Babe, a free-spirited pal of the girls who asks for help planning a blow-out farewell party — and a glitch-free ending for her life. Estelle Parsons was lauded for her guest role, but not everyone was a fan. One ethics blog subtly described the episode as “Grace and Frankie kill their friend.”
California’s End of Life Option Act came about in no small part thanks to the legacy of Brittany Maynard, a 29 year-old Anaheim woman who spent her final months advocating to die with as much agency as possible before her brain cancer took over. She died in Oregon in 2015, surrounded by family and loved ones but far from home, because she needed to be in a state that would provide the appropriate environment. Physician assisted death is currently legal in seven states and the District of Columbia, though it continues to face numerous legal challenges.
But “Paddleton” isn’t a right to die movie. There is no courtroom battle to be fought, nor any secretive pact to be made. When Andy initially goes through the routine dance of assuring Michael that he can’t give up because “miracles happen,” Michael counters, “They already gave me the prescription.” Andy grapples with his assigned role a moment, then stoically tells him, “OK.”
The men take a leisurely six-hour drive to one of the few pharmacies in the state that will fill the prescription. They bicker and drink and have loose, random and often very funny conversations. They return home and face the increasingly imminent fact that one of them will not be there much longer.
“Paddleton” (named for one of the men’s made-up games) was co-written and co-stars Mark Duplass, so it comes as no surprise it has a certain mumblecore je ne sais quoi. Scenes stretch out almost aimlessly. The repetitive routines of two schlubby, not very dynamic individuals play out in real time. There are no noble speeches. Yet within the film is a resonant meditation on the uniquely bewildering experience of imminent grief. “I’m the dying guy!” Michael yells to Andy at one point late in the story. “I’m the other guy!” Andy retorts, helplessly, heartbroken.
I’ve spent a lot of time the last several years being the other guy. I’ve sat with friends shriveling in their hospital beds. I’ve attended family funerals other relatives wouldn’t. I watched “Paddleton” a few hours before learning of the sudden death of one of my daughter’s oldest friends. And all I’ve ever really learned from all of it is that whether you’re prepared for it or not, the loss of someone you love will hit you like a baseball bat, and keep hitting you for longer than you ever thought possible.
The men in “Paddleton” are overgrown kids who like puzzles and pizza. Yet there are few tasks in life that demand as much delicacy and grit as facing death, and that task they manage with exemplary skill. As they sit together on Michael’s floor, preparing a final cocktail, Andy deadpans, “I don’t even know if you had to buy this particular pill. A hundred of anything would . . . you know.” He is sincere and reassuring and not somber. And when he later goes alone into the kitchen to mix the drink, Andy adeptly performs the chore, pausing only briefly to rip off a paper towel to dab his eyes.
I aspire to die someday with dignity, though I’m not currently making a fantastic show of living with it. Neither are any of the characters of “Paddleton.” They are — even the peripheral ones — awkward and strange and pretty weird. Maybe most of us are. And as much as we deserve a death with dignity, we long for one with empathy, shared with a friend who’ll hold our hand as we leave, and miss us when we’re gone.
soon after shaina garfield realised her vision for an eco-friendly coffin, she noticed that what she had actually made was a coffin for herself. after being diagnosed with chronic lyme disease four years ago, the prospect of death caused a preoccupation that would eventually inspire her work as an industrial designer. as she tackled the prospect of dying, she discovered an interesting contradiction between something that essentially brings people closer to earth, and the harmful impact death practices have on the planet. after a closer look, traditional burials, embalming and cremation, all involved the pollution of nasty chemicals and toxins.
speaking at design indaba 2019 shaina notes that we’ve become so far removed from nature as a result of human exceptionalism – the belief that humans are the most important entities in the universe. so she came up with ‘LEAVES’, a textile coffin built from sustainable materials, that hopes to bring us closer to the planet that we live on.
composed of a netting that wraps around the deceased, LEAVES works to make the burial process a much greener ritual. the design uses rope which has been treated with a dye and embedded with spores, encouraging fungus growth that speeds up decomposition and eats any toxins in the body. a tree is then planted on the burial site, making the most of this nutrient rich soil. instead of cemeteries, shaina imagines luscious areas where nature is representative of the greater purpose our bodies can have.
as much as it lessons the impact humans make on the planet, LEAVES also promotes positive discussions around death. drawing from funeral practices around the world, shaina considered ways in which her designs could help to support people with their grief. she imagines those mourning the death of someone coming together to tie the knots necessary to make the coffin, a meditative experience that intends to help with emotional healing.
shaina describes herself as an ‘advocate celebrating people and the earth‘, and it’s this relationship that forms the basis of her work. in a powerful description she exposes the reality that at death we are actively disconnected from nature. we choose at all costs to ‘keep ourselves in a domestic dream‘ and in the process, our consideration for the planet is nil. the natural resources it takes to make coffins, the toxins that are emitted into the air during cremation, and the chemicals seeping out of graveyards because of embalming, are all cause to believe that our attitudes towards death and the planet we live on are wrong.
My dad died nine years ago after he suffered a long, debilitating illness. It was an outcome we knew was inevitable when he was diagnosed 10 years prior, but that didn’t make it any less difficult to see him slowly lose all of the functions that are necessary for one to live a fruitful life. At the end, I spend two weeks at his bedside, in his home, alongside my family, and there were times where — despite the visits from the wonderful and dedicated hospice nurses, and despite knowing this was ahead of us — the emotional toll we experienced as we honored his directive to finish his life at home without invasive life saving measures was overwhelming.
I know I’m not alone here. That every day, people are dealing with the overwhelming feelings and decisions that accompany the death of a loved one. It’s something we will all experience at some point in our lives, yet it’s a topic we’d rather avoid, that we’d rather not think about or deal with until we absolutely have to.
A couple of months ago I listened to a podcast that examined our stigmas and stereotypes surrounding death, and I was introduced to the concept of a “death doula.” We are generally familiar with the concept of a doula at birth — someone who is not your doctor or midwife or nurse or partner or family member — but is there to provide physical and emotional support for the mother before, during, and after the birth. A death, or end of life doula, provides physical and emotional support for those who are dying, and their families, throughout the death process. It makes so much sense! Of course this needs to be a thing! And indeed it is, right here in our community. Not long after this initial introduction to the concept, I stumbled across the Instagram profile for Threshold End of Life Doula Services, a relatively new service started by Melanie Sheckels, a local hospice nurse.
Sheckels has been a nurse for almost eight years, many of those years with cardiac patients, and has been present for deaths not only professionally, but more recently in her personal life. Her mother passed away just over a year ago, and her nursing experience gave her insight into how to counsel and advocate for her mother throughout the process. “She and I had many in depth conversations about what quality of life meant to her, and she asked me to advocate for her if she was not able to do so for herself. She had an end stage lung disease, and it was very difficult for her to talk and breathe, so she asked the doctor to just ask me to make decisions for her. Those decisions really supported her comfort and her dignity, and it created a lot of peace and healing for us both. So when I look back at that experience, I can see so many ways that could’ve been a really traumatic experience, and I was able to make it a really good one relative to the situation.”
Not all dying people and their families have the benefit of a close friend or family member with a working knowledge of what the dying process looks like, so Sheckels felt that she could use her experience to provide such a service for those families in our community.
“To be perfectly honest, a lot of my experiences around the dying and their families during the end, professionally, have been rather traumatic. Hospital deaths aren’t often pretty. Obviously we do our best, but it’s a cold sterile environment, it’s unfamiliar, and almost nothing that’s happening is within the control of the person who is doing the dying. It’s hard to maintain comfort let alone anything meaningful, ceremonial. I really noticed that all of these experiences had given me this insight and skill for being able to be present for people in a way that really improved their experience.”
So, what does it look like to be an end of life doula? Sheckels emphasizes that it’s really different for every person, every family, but that it ranges from talking through those practical issues such as advanced directives and what different medical interventions look like, to being sort of a life coach. She tries to help each person identify their priorities, and look to those priorities to determine what quality of life looks like for them. Often people have unrealistic expectations of the medical industry, that their loved one is just one intervention away, when this is often not the case. “There’s this idea that if we can then we should. This idea that death is something that has to be fought off. These things put a lot of pressure on the person that is dying.” Sometimes their experience becomes a “prolonged experience of life as a dying person.”
Sheckels helps the person create a care plan called The Best Last Three Months that addresses the emotional, spiritual, physical, and mental domains of life. “We identify what they really need to feel a sense of completion in that area. If you were to pass tomorrow, what would be the hardest thing for you to let go of? Sometimes those things are not really achievable, so we try to tease out what the significance is of that thing and find a meaningful and realistic way to do it.”
Legacy planning is also a part of the discussion. She helps people work through those big questions: “did I matter, how did I matter, and will the people that I’m leaving behind be okay without me?” For the family, she helps them work through planning vigil during active dying, and how she can help facilitate that. It may mean having a doula present for days, 24 hours at a time. Sheckels works with another end of life doula to help accommodate these more intense situations. She can also be a resource for lessening caregiver burnout by listening and allowing that person to express their emotions or staying with their loved one so they can get out and about.
The concept of an end of life doula has really emerged with the past 10 years, and while there is not yet a certification for the practice, there are various organizations that offer training. Sheckels trained with the Conscious Dying Institute. She explained that many of these organizations are working to develop a certification exam and create an industry standard, and they are also connecting with the National Hospice and Palliative Care Organization to blend their work with hospice work, much like a birth doula works alongside midwives and doctors.
Beyond the personal care of families, it’s clear that Sheckels hopes to educate the community about the dying process. As she states, “A lot of people aren’t ready to approach death in a straightforward manner.” It goes back to fear and avoidance. “We take our fear and denial and put it in a closet and don’t look at it.” Through her work, she hopes to bring that fear and denial out into the open to work through it in an honest way.
I’ve often marveled at those who work with the dying and their grieving families, and I wonder about their well-being — their ability to care for themselves and separate from those intense emotions from time to time. Sheckels eloquently shares her strategy for self-care. “To walk people to and from the gate of mortality, I have to be able to navigate that terrain for myself. I have to regularly undertake personal work to maintain the ability to be present in the moment, to connect deeply with myself and others, and to embrace the impermanence of all living things, up to and including myself. That looks like meditation, journaling, therapy, connecting with nature, and completing my own end of life care planning.”
You can find out more about Threshold End of Life Doula Services through Facebook or Instagram, or reaching out at email@example.com.
Dr. Susan Wong sat down with an 84-year-old patient in the hospital, where he’d been admitted with a flare-up of a serious autoimmune condition and deteriorating kidney function.
The older man told her he wanted to go home; he’d had a good life and was ready for its end. He didn’t want aggressive care — including dialysis — having witnessed his wife and son die painfully in intensive care years ago.
Wong, an assistant professor of nephrology at the University of Washington, was prepared to follow the man’s wishes, but other physicians, eager to pursue tests and treatments, disagreed. For a week, the doctors argued about what to do. Finally, they discharged the patient, who died in hospice care a few weeks later.
Older adults with advanced kidney disease who want to forgo dialysis often encounter similar resistance from physicians, according to a new study in JAMA Internal Medicine by Wong and colleagues at the Veterans Affairs Puget Sound Health Care System in Seattle, where she’s an investigator.
The researchers documented doctors’ reactions by reviewing medical charts of 851 older patients with chronic kidney disease who refused dialysis at the VA health system from 2000 to 2011. In their notes, physicians frequently speculated the patients were incompetent, depressed, suicidal or irrational.
With dialysis, people are hooked up to a machine that removes waste from their blood, usually three times a week for four hours at a stretch. Many older adults find the treatments burdensome, and medical complications are common.
Yet patients who expressed reservations about this treatment were sometimes labeled as difficult or unprepared to confront the reality of their medical condition. “Still in denial about his kidney disease and his need for hemodialysis in the near future — repeat discussions with patient and wife regarding compliance,” one nephrologist wrote. Even when patients were firm about declining dialysis, doctors repeatedly questioned their decisions.
“Clinical practice guidelines for advanced kidney disease are geared toward survival, not what would give patients the best quality of life or the greatest functional capacity,” Wong said. Another factor at play: Nephrologists aren’t trained to ask seriously ill patients what’s most important to them and shape treatment recommendations accordingly. Although most patients want to have such conversations with a kidney specialist, few do so, studies have found.
“We don’t really know how to help patients with serious illness make decisions that are right for them or what to do when they don’t really want dialysis,” said Dr. Jane Schell, an assistant professor of palliative care and nephrology at the University of Pittsburgh.
Conversations about the potential benefits and burdens of dialysis, as well as alternatives, are especially important for frail patients 75 and older who have two or more chronic conditions, such as diabetes and high blood pressure, and difficulty with daily activities such as bathing or walking — a group at risk of experiencing significant complications from dialysis but not achieving longer life.
Healthier older adults have better outcomes on dialysis — a valuable treatment for many people. “We shouldn’t limit access to dialysis based on age, but we should have meaningful conversations about goals of care and make it clear that dialysis is a choice and that patients have alternatives,” said Dr. Bjorg Thorsteinsdottir, an assistant professor of internal medicine and bioethics at the Mayo Clinic.
Options that should be discussed include comprehensive conservative care, which calls for preserving as much kidney function as possible, managing a patient’s health problems, dealing with symptoms such as nausea, swelling, itchiness, pain and breathing difficulties, and preparing for end-of-life care; peritoneal dialysis or hemodialysis at home; and palliative dialysis, a less intensive version of this treatment that keeps people alive for longer but isn’t meant to restore kidney function.
Comprehensive conservative care programs are few and far between (in New York City, Pittsburgh, Seattle, San Francisco and a few other locations), but efforts are underway to change that. With funding from the American Society of Nephrology, Schell and colleagues at the University of Pittsburgh have developed an online conservative care curriculum set to debut in March. Nineteen nephrology training programs for physicians are set to participate.
Also, the Pathways Project, funded by the Gordon and Betty Moore Foundation, is working to make palliative care (also known as supportive care) for patients with advanced kidney disease widely available. (KHN’s coverage of end-of-life and serious illness issues is also supported in part by the Gordon and Betty Moore Foundation.) Dr. Alvin Moss, co-investigator of the project and professor of medicine at West Virginia University School of Medicine, said the project hopes to sign up 10-15 dialysis centers this year.
Sometimes, patients choose a time-limited trial of dialysis with the understanding that they can change their minds down the road.
Cyndy Patton’s 86-year-old mother, Isabel, learned last spring she had advanced kidney disease after going to a Pittsburgh hospital, sickened by repeated bouts of vomiting. Physicians suggested she try dialysis for a few weeks and see if her kidneys might rejuvenate. (The older woman had survived open-heart surgery and a stroke and was living on her own after her husband’s death.)
After a week in the hospital and another week in a rehabilitation center, there was no change: Patton’s mother still needed dialysis. Five weeks later, she confessed to her daughter that the treatment was making her miserable. But giving it up felt like committing suicide, she told Patton — an unacceptable option.
A week later, Isabel had changed her mind. “This is not a life I care to lead, being hooked up to these machines,” she told Patton. “What am I doing this for?” The older woman had consulted with Schell at the University of Pittsburgh about palliative care and hospice care, and she chose hospice.
Dialysis ended and the family gathered at Isabel’s bedside. “She was all ready to die — but she didn’t, and is still living to this day,” Patton said.
It’s an example of how hard it can be to predict what will happen to any given patient with advanced kidney disease. What’s important for the patient to understand is that “it’s not always all or nothing — dialysis or death,” Thorsteinsdottir said.
Few people have enchanted the popular imagination with science more powerfully and lastingly than physicist Richard Feynman (May 11, 1918–February 15, 1988) — the “Great Explainer” with the uncommon gift for bridging the essence of science with the most human and humane dimensions of life.
“My heart stopped,” Gleick tells me. “I have never had an experience like that as a biographer, before or since.”
In a mass of unread papers sent to him by Feynman’s widow, Gweneth, Gleick found a letter that discomposed his most central understanding of Feynman’s character. A generation after computing pioneer Alan Turing tussled with the binary code of body and spirit in the wake of loss, Feynman — a scientist perhaps uncommonly romantic yet resolutely rational and unsentimental in his reverence for the indomitable laws of physics that tend toward decay — penned a remarkable letter to a physical nonentity that was, for the future Nobel-winning physicist, the locus of an irrepressible metaphysical reality.
In high school, the teenage Richard spent summers at the beach in his native Far Rockaway. There, he grew besotted with a striking girl named Arline — a girl he knew he would marry. Both complement and counterpoint to his own nature, Arline met Richard’s inclination for science with ardor for philosophy and art. (The art class he took just to be near her would lay the foundation for his little-known, lifelong passion for drawing.) By his junior year, Richard proposed. Arline accepted. With the eyes of young love, they peered into a shared future of infinite possibility for bliss.
But they were abruptly grounded when a mysterious malady began afflicting Arline with inexplicable symptoms — a lump would appear and disappear on her neck, fevers would roil over her with no apparent cause. Eventually, she was hospitalized for what was believed to be typhoid.
Feynman began to glimpse the special powerlessness that medical uncertainty can inflict on a scientific person. He had come to believe that the scientific way of thinking brought a measure of calmness and control in difficult situations — but not now.
Just as Feynman began bombarding the doctors with questions that steered them toward a closer approximation of the scientific method, Arline began to recover just as mysteriously and unpredictably as she had fallen ill. But the respite was only temporary. The symptoms returned, still shorn of a concrete explanation but now unambiguously pointing toward the terminal — a prognosis Arline’s doctors kept from her. Richard refused to go along with the deception — he and Arline had promised each other to face life with unremitting truthfulness — but he was forced to calibrate his commitment to circumstance.
His parents, Arline’s parents, and the doctors all urged him not to be so cruel as to tell a young woman she was dying. His sister, Joan, sobbing, told him he was stubborn and heartless. He broke down and bowed to tradition. In her room at Farmingdale Hospital, with her parents at her side, he confirmed that she had glandular fever. Meanwhile, he started carrying around a letter — a “goodbye love letter,” as he called it — that he planned to give her when she discovered the truth. He was sure she would never forgive the unforgivable lie.
He did not have long to wait. Soon after Arline returned home from the hospital she crept to the top of the stairs and overheard her mother weeping with a neighbor down in the kitchen. When she confronted Richard — his letter snug in his pocket — he told her the truth, handed her the letter, and asked her to marry him.
Marriage, however, proved to be a towering practical problem — Princeton, where Feynman was now pursuing a Ph.D., threatened to withdraw the fellowships funding his graduate studies if he were to wed, for the university considered the emotional and pragmatic responsibilities of marriage a grave threat to academic discipline.
Just as Feynman began considering leaving Princeton, a diagnosis detonated the situation — Arline had contracted a rare form of tuberculosis, most likely from unpasteurized milk.
At first, Feynman was relieved that the grim alternative options of Hodgkin’s disease and incurable cancers like lymphoma had been ruled out. But he was underestimating, or perhaps misunderstanding, the gravity of tuberculosis — the very disease which had taken the love of Alan Turing’s life and which, during its two-century heyday, had claimed more lives around the globe than any other malady and all wars combined. At the time of Arline’s diagnosis in 1941, immunology was in its infancy, the antibiotic treatment of bacterial infections practically nonexistent, and the first successful medical application of penicillin a year away. Tuberculosis was a death sentence, even if it was a slow death with intervals of remission — a fact Richard and Arline faced with an ambivalent mix of brave lucidity and hope against hope.
Meanwhile, Richard’s parents met the prospect of his marriage with bristling dread. His mother, who believed he was marrying Arline out of pity rather than love, admonished him that he would be putting his health and his very life in danger, and coldly worried about how the stigma attached to tuberculosis would impact her brilliant young son’s reputation. “I was surprised to learn such a marriage is not unlawful,” she scoffed unfeelingly. “It ought to be.”
But Richard was buoyed by love — a love so large and luminous that he found himself singing aloud one day as he was arranging Arline’s transfer to a sanatorium. Determined to go through with the wedding, he wrote to his beloved:
I guess maybe it is like rolling off of a log — my heart is filled again & I’m choked with emotions — and love is so good & powerful — it’s worth preserving — I know nothing can separate us — we’ve stood the tests of time and our love is as glorious now as the day it was born — dearest riches have never made people great but love does it every day — we’re not little people — we’re giants … I know we both have a future ahead of us — with a world of happiness — now & forever.
On June 29, 1942, they promised each other eternity.
He borrowed a station wagon from a Princeton friend, outfitted it with mattresses for the journey, and picked up Arline in Cedarhurst. She walked down her father’s hand-poured concrete driveway wearing a white dress. They crossed New York Harbor on the Staten Island ferry — their honeymoon ship. They married in a city office on Staten Island, in the presence of neither family nor friends, their only witnesses two strangers called in from the next room. Fearful of contagion, Richard did not kiss her on the lips. After the ceremony he helped her slowly down the stairs, and onward they drove to Arline’s new home, a charity hospital in Browns Mills, New Jersey.
Meanwhile, WWII was reaching its crescendo of destruction, dragging America into the belly of death with the attack on Pearl Harbor. Now one of the nation’s most promising physicists, Feynman was recruited to work on what would become the Manhattan Project and soon joined the secret laboratory in Los Alamos.
Arline entered the nearby Albuquerque sanatorium, from where she wrote him letters in code — for the sheer fun of it, because she knew how he cherished puzzles, but the correspondence alarmed the military censors at the laboratory’s Intelligence Office. Tasked with abating any breaches to the secrecy of the operation, they cautioned Feynman that coded messages were against the rules and demanded that his wife include a key in each letter to help them decipher it. This only amplified Arline’s sense of fun — she began cutting holes into her letters, covering passages with ink, and even mail-ordered a jigsaw puzzle kit with which to cut up the pages and completely confound the agents.
But the levity masked the underlying darkness which Richard and Arline tried so desperately to evade — Arline was dying. As her body failed, he steadied himself to her spirit:
You are a strong and beautiful woman. You are not always as strong as other times but it rises & falls like the flow of a mountain stream. I feel I am a reservoir for your strength — without you I would be empty and weak… I find it much harder these days to write these things to you.
In every single letter, he told her that he loved her. “I have a serious affliction: loving you forever,” he wrote.
In early 1945, two and a half years into their marriage, Richard and Arline made love for the first time. He had been too afraid of harming her frail health somehow, she too afraid of infecting him with the deadly bacterium consuming her. But Arline insisted that this pent up desire could no longer be contained and assured Richard that this would only bring them closer — to each other, and to the life they had so lovingly dreamt up for themselves:
I’ll always be your sweetheart & first love — besides a devoted wife — we’ll be proud parents too… I am proud of you always Richard –[you are] a good husband, and lover, & well, coach, I’ll show you what I mean Sunday.
But heightened as their hopes were by this new dimension of shared experience, Arline’s health continued to plummet. Her weight dropped to eighty-four pounds. Exasperated by the helplessness of medicine, which Feynman had come to see not as a manifestation but as a mutilation of the scientific method, he invested all hope in an experimental drug made of mold growths. “Keep hanging on,” he exhorted Arline. “Nothing is certain. We lead a charmed life.” She began spitting blood.
At twenty-seven, on the precipice of a brilliant scientific career, he was terminally in love.
On June 16, 1945, while working at the computing room at Los Alamos, Feynman received a call from the sanatorium that Arline was dying. He borrowed a colleague’s car and sped to the hospital, where he found her immobile, her eyes barely tracing his movement. Early in his scientific career, he had been animated by the nature of time. Now, hours stretched and contracted as he sat at her deathbed, until one last small breath tolled the end at 9:21PM.
The wake of loss has a way of tranquilizing grief with the pressing demands of practical arrangements — a tranquilizer we take willingly, almost gratefully. The following morning, Feynman arranged for his beloved’s cremation, methodically collected her personal belongings, and on the final page of the small spiral notebook in which she recorded her symptoms he wrote with scientific remove: “June 16 — Death.”
And so we arrive at Gleick’s improbable discovery in that box of letters — improbable because of the extreme rationality with which Feynman hedged against even the slightest intimation of metaphysical conjectures untestable by science and unprovable by reason. During his courtship of Arline, he had been vexed by her enthusiasm for Descartes, whose “proof” of God’s perfection he found intellectually lazy and unbefitting of Descartes’s reputation as a champion of reason. He had impishly countered Arline’s insistence that there are two sides to everything by cutting a piece of paper and half-twisting it into a Möbius strip, the ends pasted together to render a surface with just one side.
Everything that appeared mystical, Feynman believed, was simply an insufficiently explained mystery with a physical answer not yet found. Even Arline’s dying hour had offered testing ground for conviction. Puzzlingly, the clock in the room had stopped at exactly 9:21PM — the time of death. Aware of how this bizarre occurrence could foment the mystical imagination in unscientific minds, Feynman reasoned for an explanation. Remembering that he had repaired the clock multiple times over the course of Arline’s stay at the sanatorium, he realized that the instrument’s unwieldy mechanism must have choked when the nurse picked it up in the low evening light to see and record the time.
How astonishing and how touchingly human, then, that Feynman penned the letter Gleick found in the box forty-two years later — a letter he wrote to Arline in October of 1946, 488 days after her death:
I adore you, sweetheart.
I know how much you like to hear that — but I don’t only write it because you like it — I write it because it makes me warm all over inside to write it to you.
It is such a terribly long time since I last wrote to you — almost two years but I know you’ll excuse me because you understand how I am, stubborn and realistic; and I thought there was no sense to writing.
But now I know my darling wife that it is right to do what I have delayed in doing, and that I have done so much in the past. I want to tell you I love you. I want to love you. I always will love you.
I find it hard to understand in my mind what it means to love you after you are dead — but I still want to comfort and take care of you — and I want you to love me and care for me. I want to have problems to discuss with you — I want to do little projects with you. I never thought until just now that we can do that. What should we do. We started to learn to make clothes together — or learn Chinese — or getting a movie projector. Can’t I do something now? No. I am alone without you and you were the “idea-woman” and general instigator of all our wild adventures.
When you were sick you worried because you could not give me something that you wanted to and thought I needed. You needn’t have worried. Just as I told you then there was no real need because I loved you in so many ways so much. And now it is clearly even more true — you can give me nothing now yet I love you so that you stand in my way of loving anyone else — but I want you to stand there. You, dead, are so much better than anyone else alive.
I know you will assure me that I am foolish and that you want me to have full happiness and don’t want to be in my way. I’ll bet you are surprised that I don’t even have a girlfriend (except you, sweetheart) after two years. But you can’t help it, darling, nor can I — I don’t understand it, for I have met many girls and very nice ones and I don’t want to remain alone — but in two or three meetings they all seem ashes. You only are left to me. You are real.
My darling wife, I do adore you.
I love my wife. My wife is dead.
And then, with the sole defibrillator for heartache we have — humor — Feynman adds:
PS Please excuse my not mailing this — but I don’t know your new address.
Preparing for the death of a loved one is difficult no matter the circumstances.
But Annalisia Wilharm said she never expected a doctor would deliver the bad news about her grandfather via a video screen on a robot.
Wilharm was sitting by her grandfather’s bedside in the ICU of the Kaiser Permanente Medical Center in Fremont, California, last Monday night when the machine rolled into their room and a doctor, appearing via live video link, offered his grim prognosis. Her grandfather Ernest Quintana, 78, died the next day.
“I think they should have had more dignity and treated him better than they did,” Wilharm told CNN. “No granddaughter, no family member should have to go through what I just did with him.”
Wilharm told CNN her family knew that her grandfather would die soon. But they’re angered by the way the situation was handled and how the news was delivered. She said she and her family hope no one else receives the same treatment.
“I was so scared for him and disappointed with the delivery,” Wilharm said, choking up. “And I could tell by the look on his face what that did to him.”
A spokeswoman for the hospital offered “sincere condolences to the family” in a statement sent to CNN.
“We take this very seriously and have reached out to the family to discuss their concerns,” said Michelle Gaskill-Hames, a senior vice president and area manager of Kaiser Permanente Greater Southern Alameda County.
“Our physicians and nurses were in regular, in-person communication with the patient and family about his condition from the moment he entered our hospital,” she added. “The evening video tele-visit was a follow-up to earlier physician visits — it did not replace previous conversations with patient and family members and was not used in the delivery of the initial diagnosis.”
For years, Quintana had lived with chronic obstructive pulmonary disease, a progressive lung disease that make makes it hard to breathe. It includes emphysema and chronic bronchitis.
Last Monday, doctors at the hospital conducted tests to assess the state of Quintana’s lungs. That evening, Wilharm told her mother and grandmother — Quintana’s wife of 58 years — that the pair should go home and get some rest.
Soon after a robot with a video screen came into the room, accompanied by a nurse who remained silent. A doctor on the screen began speaking to them.
Wilharm said she had no idea who the doctor was or where he was located.
She filmed the interaction on her phone as the doctor relayed the results of her grandfather’s tests.
In the footage viewed by CNN, the doctor on the screen tells Quintana, “Unfortunately there’s nothing we can treat very effectively.”
The doctor explains they can give Quintana morphine to make him more comfortable, but that would make breathing more difficult.
Wilharm then tells her grandfather the doctor is recommending hospice care at home.
“You know, I don’t know if he’s going to get home,” the doctor says, adding that the best treatment plan at that point was to begin focusing on Quintana’s comfort.
Wilharm told CNN that at that point she had to call her mother and grandmother so they could get back to the hospital.
“It didn’t matter (to the hospital) that his wife of 58 years wasn’t there for that,” she said.
Wilharm told CNN that her family was under no illusions about her grandfather’s condition.
“We knew that we were going to lose him,” Wilharm told CNN in a phone interview Saturday. “Our point is the delivery (of the news). There was no compassion.”
When her grandmother returned to the hospital, she asked the nurses about the robot. According to Wilharm, they explained the hospital was small and the robot was used to make rounds at night.
Gaskill-Hames, the hospital spokeswoman, said the health care provider is “continuously learning how best to integrate technology into patient interactions.”
“In every aspect of our care, and especially when communicating difficult information, we do so with compassion in a personal manner,” she said, adding that the term “robot” is “inaccurate and inappropriate.”
“This secure video technology is a live conversation with a physician using tele-video technology, and always with a nurse or other physician in the room to explain the purpose and function of the technology,” Gaskill-Hames added. It “allows a small hospital to have additional specialists such as a board-certified critical care physician available 24/7, enhancing the care provided and bringing additional consultative expertise to the bedside.”
Wilharm told CNN that a doctor had visited Quintana in person earlier in the day.
Wilharm said the in-person doctor was “very sweet” and held her grandfather’s hand as she spoke with him about hospice care and his options.
Gaskill-Hames said the hospital does not encourage the use of technology to replace personal interactions between patients and health care workers.
“We understand how important this is for all concerned, and regret that we fell short of the family’s expectations,” she said.
“That was one of the worst days of my life,” she said.
After her 52-year-old husband died of the flu in 2014, Susan Capurso from Long Island, New York was left feeling helpless, angry and unsupported.
“We weren’t prepared at all,” says Capurso, who had been married for 25 years. “We didn’t have hospice, as my husband’s illness was not a long-term one. At the end, there was no one standing next to me saying ‘this is what is happening now. He’s going to pass within hours and this is what to expect.’ I’m detail-oriented, I wanted to know.”
Interested in offering non-medical, holistic and emotional support to the dying and their families, Capurso began to research the work of an end-of-life doula. Traditionally, a doula is a layperson who aids a woman in childbirth and newborn aftercare alongside medical staff. In the same way, end-of-life doulas are supportive to hospice; they do not take the place of it.
To further her interest in this growing field, Capurso began volunteering for a hospice and enrolled in the certificate-bearing Doulagivers training school of New York City (DoulaGivers.com), a school started by Suzanne O’Brien, formerly a hospice and oncology nurse.
O’Brien was inspired when, on a trip to Zimbabwe in 2012, she saw how local people were trained to sit with a person who was dying and “guide” them through their journey. While the country lacks basic needs and medicinal care, “they did have neighbors sitting with a family member who is dying — holding that space for them,” says O’Brien. “The power of presence might be the most powerful medicine we have, but we’ve lost that in our health care system. We’re all in this together. We should support each other however we can.”
On O’Brien’s course, “training is individualized,” says Capurso. “Weekends are spent with [O’Brien] and everything else is done online through a series of live webinars and modules.”
The three-pronged curriculum covers end of life phases from diagnosis to stabilization, transition and disease process. Elder care assistance and advanced directive (when a patient determines their end of life wishes while they are still able to do so) is also covered.
“This covers the important papers you really need to button up, such as health care proxy, living will, do not resuscitate,” says Capurso.
Practical help is also part of a doula’s workload.
“We come into homes, prepping meals for the week, doing laundry and going through each room to ensure it’s safe,” says Capurso.
Beyond these basics, Capurso extends her healing work to include the creation of a legacy book with patients.
“It’s something we work on together. We go through your life, adding personal stories, photographs and memories,” says Capurso. “It’s not just something you’re leaving for family and friends, it really is therapeutic — bringing light, love and closure.”
Helping patients to compose letters to loved ones and assisting families with writing memorials and eulogies are also customary tasks.
Having your “funeral” before you die is another trend that doulas can help with.
“Why not have a memorial before you go?” says Capurso. “Let’s laugh, say our goodbyes and be happy. It doesn’t have to be scary. A celebration with the dying person there shapes the person’s life and offers closure.”
Carrying out a dying person’s wishes is also a top priority for Capurso.
“I can help find a way for the last days to meet a dying person’s desires. Maybe starting to contact family members to come in for a final visit, asking them to write a memory down on a card and placing it in to a basket, incorporating nice music, candles or aromatherapy,” says Capurso.
This line of work is especially well-suited for hospice volunteers who want to do deeper work, as well as healers, reiki practitioners, massage therapists and acupuncturists. It’s also beneficial to have a genuine interest in educating the community on the resources available for them.
“You don’t go looking for this career, it calls out to you,” she says.
The demand for such caregivers is overwhelming. By 2020, an estimated 117 million Americans will need some caregiver assistance.
“Doulas fit in to the personal companion model, which is a billion-dollar industry serving our elder population,” says Deanna Cochran, RN. Cochran is the founder and CEO of Quality of Life Care, LLC, in San Marcos, Texas, an end-of-life training and certification agency. She’s also the first chair of the End of Life Doula Council within the National Hospice and Palliative Care Organization.
“The dying have specific needs and fears that need addressing,” she says. “As we evolve, the field is ripe for training people to be skillful at this — it’s a movement that’s growing. There’s plenty of room for every single hospice in this country to have at least one part-time doula. Within the next 10 to 15 years, opportunities will also become prevalent at nursing homes and assisted living centers.”
Fortunately, training is more prevalent now.
“There are over 10 certification programs, ranging in price from $700 to $2,500,” says Cochran, who offers a fast-track, 16-week program. “You can learn the skills, but you need to do the work by volunteering through hospice, nursing homes, hospitals. There’s an art to it.”