She died at home, but it wasn’t the romantic scene found in movies, where the family held her hand and she simply closed her eyes. In reality, there was a night when she had diarrhea 12 times. In reality, every time she had to be moved she was in pain. This was how a caregiver described caring for her mother as she died at home to social scientists studying end-of-life decision-making.
In a new study, Jacquelyn Benson, assistant professor of human development and family science at the University of Missouri, found that home deaths can be physically and emotionally challenging, especially for caregivers.
“The realities of a home death experience present challenges for family members, especially those with limited resources and social support,” Benson said. “It is important that people understand that home death does not automatically equate a good death.”
In recent decades, there has been a groundswell of social movements championing the ideal of dying at home. According to the Centers for Disease Control and Prevention, home deaths in the U.S. increased nearly 30 percent from 2000 to 2014, while deaths in hospitals, nursing homes and long-term care communities dropped.
To study how home deaths might impact caregivers, Benson along with fellow MU researchers Benyamin Schwarz, Ruth Brent Tofle and Debra Parker Oliver, captured stories from caregivers to identify common themes surrounding the experiences of home deaths. Through the in-depth interviews, the researchers uncovered several themes that exposed the challenges that are often not included in conversations about dying at home. In some cases, challenges arose because there was uncertainty for the decision maker, and some caregivers were not prepared for making decisions regarding the end of a loved one’s life.
The researchers also found that financial resources and strong relationships can help in differentiating good deaths from bad ones. Researchers found that the “good” death experiences involved high levels of emotional support for the dying individuals and the caregivers, and that the place of death played less of a role.
“A few well-known sayings about home are relevant to our findings,” Benson said. “For instance, many people believe there is ‘no place like home,’ which suggests the physical space we call home is paramount when it comes to our comfort. However, another saying, ‘home is where the heart is’ suggests that the essence of home can be replicated in less familiar spaces. When making end-of-life decisions it is important to remember that death can be quite gruesome and that it might be easier on both the dying individual and the caregiver to make a plan that carries the concept of ‘home’ to wherever they might be.”
“The motivations and consequences of dying at home: family caregiver perspectives,” was published in a special issue of the Journal of Housing for the Elderly on Environments of Dying, Death, and Caregiving at End-of-Life. Benson served as guest editor for this special issue.
In the next installment of our occasional series Windows into Health Care, health reporter Kara Lofton spoke with hospice nurse Lori Carter. Carter has been a hospice nurse for 20 years. She said for her and for many of the hospice nurses she knows, the work is a calling. She said some of what she does is straight-up nursing — managing pain, dressing wounds, and addressing symptoms of end-stage disease. But the most subtle part of the job is helping families navigate one of the most intimate and emotional times of their lives.
LOFTON: For you, when you think about hospice and the work that you do and being called to it, what does that mean exactly to you?
CARTER: Just being with the patient and the family in the most emotional time of their life. Helping them give each other that last act of love. I appreciate and I feel honored that I am with that patient and that family during that time.
LOFTON: So some people, and I’ve heard especially in Appalachia, can have preconceived notions about what hospice is and what you actually do exactly. Explain to me what you do. What happens when you go into a home for the first time and how does that relationship form?
CARTER: Well, depending on, you know, what is going on with the patient and how early or late in the disease trajectory that we get them, you introduce yourself and…you listen. The big thing is you listen…You can find out f there is struggle already between what is happening with the patient and how the family is dealing with that. Of course, you know, we treat any symptoms that the patient has. I mean, my job I feel is [to be] the patient advocate and just trying to palliate those symptoms that they have inside [so] that they are comfortable.
I find out, you know, is there any things that they want to do before they die? You know, what are they able to do? And I try to facilitate that in any way that I can. I have a bag of ramps in my car right now, [in] that a patient wanted some ramps. I knew that would be the last time he got to eat ramps, so I went and dug some up.
LOFTON: Some people think of hospice as giving up so, to speak. When you hear that what is your reaction to that?
CARTER: I think it’s very sad. You know, we all are going to die. We all are. And, you know, normally the patients that we get — they have already fought for a very long time. This is the last act of love that you can give and, you know, it’s going to happen whether hospice is there or not. And they are most certainly not giving up. I mean, they’re getting ready to go down a path that they’ve never been down either.
LOFTON: Has this work changed how you think about death?
CARTER: It most certainly has. My family was not the type that, you know, went to funerals all the time…I came into hospice blind, really. And I quickly learned that it is a special experience. You have to believe that quality of life is better than quantity.
And I tell you how I cope with things is I will walk into a home, and I will look…there’s always pictures on the walls of, you know, families. And I will look at those. I always do. And I can see what that patient looked like, and how robust they were, and how happy they were. And then I see the patient now, and that actually helps me know what I need to do and how I need to direct the family into what’s happening. You know where they are in this, this experience that they’re getting ready to have.
LOFTON: One of the things I think is interesting about hearing conversations around hospice, especially from providers in hospice, is that we hear a lot about a nursing shortage and yet, and like nursing turnover in hospitals. But hospice seems to have lower turnover rates. And people who become nurses in hospice tend to stay around despite being around death all the time, essentially. Why do you think that is?
CARTER: I think it is a calling. I think you do realize that it’s a special kind of nursing — you fall so much in love with what you do, and the families, and the patients. And I cannot imagine doing anything else. I don’t think it is for every nurse. I don’t. I think that you have a special belief and you want that special relationship with the patient and the family. I worked in the hospital and some nurses think that’s great, and that’s wonderful for them. But I didn’t feel, for me, that I could give the care — and the personal care, maybe I should say — that I wanted to. I just didn’t feel that I could do that. And with hospice, I can.
LOFTON: Does working with people at the end of life change how you live your life now?
CARTER: It does. You know, I have heard so many times from patients: ‘You know, I wish I would have done this or I wish I would have done that.’ I hear of their regrets. I see families and patients try to get over, you know, maybe they had been estranged, child had been estranged from a parent or, you know, a parent left and now they’re, they’re trying to make amends. I think …it’s taught me that I need to ask for forgiveness, not to have regrets, say what I need to say to my loved ones. So that when that time comes, you won’t have those regrets and those losses.
LOFTON: When you hear about things that people wish they had done, are there any themes that stand out to you that lots of people kind of have regrets with at the end of life?
CARTER: Oh, I think a lot of times it’s ‘I should have took that trip.’ ‘I shouldn’t have worked so much.’ ‘I should have spent more time with children or spouses.’ It’s those types of things that, you know, they wish they would have done. Things that may happen in life and you really don’t give it a second thought at the time. It seems to come back at the end of life, no matter how trivial it is — you, you remember, ‘I should have said this’ or ‘I should have done that.’ But hopefully for the most part, I think, you know, they may say those things. But again, it’s usually not big, huge things.
LOFTON: Over the last 20 years that you’ve been working in hospice, how has it changed?
CARTER: Well, when I first started, no one knew what it was. And now it is more mainstream. I think people are more, they understand more, what is happening. It — death — is not shunned like it used to be, you know. People talk about it more. Unfortunately with our drug problem, it has caused some problems for us. I have to count pills every time I go. I have to watch neighbors coming over to visit — we have to find a [secure] place to put the medicine. It used to be able to sit beside the bed, but it can’t do that anymore.
LOFTON: As more young people leave the state, are you seeing [a] smaller family group surrounding a patient at the end of life?
CARTER: I am. And I’m seeing, you know, a lot of times it’s the 90-year-old spouse trying to take care of the 90-year-old husband or wife. Family seems to live out of state a lot of times, and it has definitely caused some problems. Fortunately, we also have a long-term care team. And if the patient needs to be placed, they can still have hospice care. But there’s definitely a lot of family that are not local anymore…they’re looking to hire caregivers, [but] they might not be able to afford caregivers. In that case, we just try to ramp up our visits, and try to pull in anyone that we can possibly pull in to assist that family.
“At 92 years old, I finally learned to do as I’m told,
The sun comes up, the sun goes down,
The earth keeps goin’ ’round and ’round.
I’m content where I am.
In the winter of life, I do the best that I can.”
Princeton resident Donald Granstaff spends much of his time these days looking back on his life.
The 92-year-old husband, father, Navy veteran, musician, preacher and missionary served his country and God for decades around the globe. Today, Donald often reflects on those times from his bedroom while under the care of Pennyroyal Hospice.
“I was thinking the last few days, what have I accomplished?” he said Monday afternoon. “Around the world twice. Haiti and the West Indies — all that. And all I can come up with is the guys that I prayed with and I lead them to the Lord. And, I suppose that’s what it’s all about.”
To help Donald face the winter of his life, Kenna Hudgins, board certified music therapist, brings her keyboard, drums, guitar and even a tambourine, weekly to share an hour of tunes with the elderly patient at his home. Hudgins and Donald sing familiar songs and play the instruments together in an effort to make his transition easier.
“The main goal I initially assessed (for Donald) was for anticipatory grief — to work through the acceptance of the fact that we are terminal and now on hospice (care),” she said. “He’s very aware, so day after day just knowing that it’s coming and there will be changes and decline. Life is hard. Music therapy offers a way to process that musically.”
“Anyone who responds to music can benefit from music therapy, especially in hospice,” Hudgins said. “Music plays a role in all of our lives. It always has. It’s why we can watch a movie and feel scared, feel love or feel emotion. Music causes neurologic response — it affects our whole brain — in multiple areas simultaneously. Because of that, music therapy is not about being a musician. It’s not about understanding music. It’s about just responding.”
Hudgins, who is a contractor with Pennyroyal Hospice, uses her skills as a board certified music therapist to address the needs of patients in Christian, Todd, Trigg, Lyon and Caldwell counties in western Kentucky.
“Hospice is very grounding,” Hudgins said. “Every day that you go into somebody’s house and they’re dealing with their struggles, it brings you back to true purposes — day-to-day tasks and stresses don’t matter as much because life is short. Personally, it’s just a very rewarding field.”
Communicating with hospice social workers, Hudgins identifies patients who may benefit from music therapy. She asks family members for 10 minutes of their time to visit their loved one and share a song or two with them to assess his or her responses.
“I don’t usually talk much about it, I just let them experience it,” she said, smiling. “I’ve never been told not to come back and it’s never just 10 minutes.”
Hudgins said everyone has memories associated with certain music.
“A therapist’s job is to find that music that is significant to that person,” she said.
Working with some patients can be difficult, Hudgins said, because of the emotions tied to facing the end of life, but sharing music with them is rewarding.
“Music is so joyful,” she said. “When I get to bring joy to a family and a loved one … that’s not a sad job. … I’m really blessed to just be a part of their lives. To bring joy is just huge.”
Music with Donald
After working with Donald for several weeks, Hudgins said her therapy goals for him shifted to decreasing his feelings of isolation.
“I try to get as much participation from him physically, whether that’s playing the keyboard or drumming,” she said. “As his hands might get more stiff, clapping — anything to get his body engaged. If his body is unable, then just getting him to verbally participate. That, in and of itself, will decrease isolation.”
In Monday’s music therapy session, Hudgins wanted Donald to sing some love songs with her while playing instruments.
“With Valentine’s day coming up next week, we’re going to do sweetheart songs,” she said.
“The old sweetheart songs,” Donald said. “That’s the best kind, the old ones.”
The duo harmonized to Bing Crosby’s “Let Me Call You Sweetheart” as Hudgins played the keyboard.
“Let me call you sweetheart
I’m in love with you
Let me hear you whisper
That you love me too …”
In the middle of the song, Don stopped singing to share a childhood memory.
“I used to hear my dad sing that one all the time,” Donald said.
“Yeah? Did he sing it to your mom?” Hudgins said.
“Yeah. He worked in vaudeville for a long time,” he said. “He played mandolin and violin, and he sang all the time. He loved to sing.”
“Good memories,” Hudgins said.
Donald married his own sweetheart Betty 68 years ago. They exchanged vows on June 16, 1950.
“It was my birthday,” he said.
In the living room, Betty sat on the couch quietly listening to her husband sing and play music with Hudgins. She said music therapy is a comfort to her and Donald, who played several instruments, including the organ, keyboard and drums since he was a boy.
“I love that he’s even trying,” she said after the session. “I think this is a good thing for him because he was a musician. It meant so much to his heart. That was his life.”
Back in his bedroom, a second song, Frank Sinatra’s “My Funny Valentine,” also sparked Donald’s memories of his father.
“That’s a good song,” he said. “He used to sing songs like it.”
“I’m glad I’m making you think about your dad. I haven’t heard you talk a lot about him,” Hudgins said.
“He was quite a man. Yeah boy! He was something else,” Donald said, remembering times they would go fishing together at Lake Barkley. “He owned a couple of boats. Nice, big boats. And I used to go with him on the boats.”
Midway through the hour, Hudgins sang the chorus to a song about Donald’s life they wrote together after three or four music therapy sessions.
“I am a husband, a father, a preacher, a teacher
A born-again, saved-by-grace man …”
“When I came out of college, I was a really smooth character,” Donald said, listening to the lyrics. “I was fast and furious, and I didn’t stay that way very long. I was saved in June 1959, and before that I was a ‘religious’ human being …”
Early in their marriage, Donald and Betty took their five children to the mission field in the British Isles of the Caribbean and later in Haiti. Donald also helped another missionary build a radio station in Dominica. When they moved back to the U.S., he pastored a few churches in McMinnville, Tennessee, and Princeton. For a time, he often played the organ in the Barkley Lodge dining room.
“He was a musician from the time he was little,” Betty said. “Every church we were a part of he would play the organ until he wasn’t able to physically.”
Now, Betty said, some days can be difficult.
“Sometimes I have an overwhelming sadness. It’s hard to see him not be able to do anything,” Betty said, crying. “God love him, he never complains. Never, ever complains about anything. He’s just always up and very sweet. He’s still a testimony to everybody that visits him because of his attitude.”
To close out Monday’s music therapy session, Donald and Hudgins sang the Roy Rogers and Dale Evans classic, “Happy Trails.”
“Who cares about the clouds when we’re together?
Just sing a song, and bring the sunny weather.
Happy trails to you,
Until we meet again.”
“I think it’s good. It can help lift you up,” Donald said of music therapy with Hudgins. “I’m not like some guys. Some guys get tired of it, throw their hands up and leave. I’ll try.”
Hudgins said Donald “still has a lot of life in him.”
“Whether (the patient) is a musician or not, music is a way to connect with the outside world. It can pull you into different areas of your own life, make you feel alive again,” she said.
Part of Donald’s legacy will be the song he and Hudgins wrote together.
“We have created a tangible song that he can leave for his family,” she said. “His family are musicians so they can actually play that song and play it with him.”
The chorus is:
“I am a husband, a father, a teacher, a preacher
A born-again, saved-by-grace man.
I’m a musician, woodworker, a servant, missionary
But most of all I’m just a good ole boy from Kentucky.”
Donald and Hudgins plan to meet next week for music therapy.
“Every one of us has had music in our lives that has impacted us,” Hudgins said. “It’s my job to figure out what is going to impact someone at the end of their life for the best end-of-life experience possible.”
If someone you love has died in a hospital, you may have seen modern death at its worst: overly medicalized, impersonal, and filled with unnecessary suffering. The experience can be a bitter lesson in Buddha’s most basic teaching: the more we try to avoid suffering (including death), the worse we often make it.
Even though roughly half of Americans die in hospitals and other institutions, most of us yearn to die at home, and perhaps to experience our leavetaking as a sacred rite of passage rather than a technological flail. You don’t have to be a saint, or be wealthy, or have a Rolodex of influential names to die well. But you do need to prepare. It helps to be a member of at least one “tribe,” to have someone who cares deeply about you, and to have doctors who tell you necessary truths so that you can decide when to stop aggressive treatment and opt for hospice care. Then those who care for you can arrange the basics: privacy, cleanliness, and quiet, the removal of beeping technologies, and adequate pain control. They can listen and express their love, and provide the hands-on bedside care hospice doesn’t cover.
From then on, a more realistic hope for our caregivers, and for ourselves when we are dying, may not be an idealized “good death” by a well-behaved patient, but a “good enough death,” where we keep the dying as comfortable and pain-free as possible, and leave room for the beautiful and the transcendent—which may or may not occur.
Hospice professionals often warn against high expectations. Things will probably not go as planned, and there comes a point when radical acceptance is far more important than goal-oriented activity. They don’t like the idea, inherent in some notions of the “good death,” of expecting the dying to put on a final ritual performance for the living, one marked by beautiful last words, final reconciliations, philosophical acceptance of the coming of death, lack of fear, and a peaceful letting go.
“I don’t tell families at the outset that their experience can be life-affirming, and leave them with positive feelings and memories,” said hospice nurse Jerry Soucy. “I say instead that we’re going to do all we can to make the best of a difficult situation, because that’s what we confront. The positive feelings sometimes happen in the moment, but are more likely to be of comfort in the days and months after a death.” This is what it took, and how it looked, for the family of John Masterson.
John was an artist and sign painter, the ninth of ten children born to a devout Catholic couple in Davenport, Iowa. His mother died when he was 8, and he and two of his sisters spent nearly a year in an orphanage. He moved to Seattle in his twenties, earned a black belt in karate, started a sign-painting business, and converted to Nichiren Shoshu, the branch of Buddhism whose primary practice is chanting. He never left his house without intoning three times in Japanese Nam Myoho Renge Kyo (“I Honor the Impeccable Teachings of the Lotus Sutra”).
He was 57 and living alone, without health insurance, when he developed multiple myeloma, an incurable blood cancer. He didn’t have much money: he was the kind of person who would spend hours teaching a fellow artist how to apply gold leaf, while falling behind on his paid work. But thanks to his large extended family, his karate practice, and his fierce dedication to his religion, he was part of several tribes. He was devoted to his three children—each the result of a serious relationship with a different woman—and they loved him equally fiercely. His youngest sister, Anne, a nurse who had followed him to Seattle, said he had “an uncanny ability to piss people off but make them love him loyally forever.”
When he first started feeling exhausted and looking gaunt, John tried to cure himself with herbs and chanting. By the time Anne got him to a doctor, he had a tumor the size of a half grapefruit protruding from his breastbone. Myeloma is sometimes called a “smoldering” cancer, because it can lie dormant for years. By the time John’s was diagnosed, his was in flames.
Huge plasma cells were piling up in his bone marrow, while other rogue blood cells dissolved bone and dumped calcium into his bloodstream, damaging his kidneys and brain function. He grew too weak and confused to work or drive. Bills piled up and his house fell into foreclosure. Anne, who worked the evening shift at a local hospital, moved him into her house and drove him to various government offices to apply for food stamps, Social Security Disability, and Medicaid. She would frequently get up early to stand in line outside social services offices with his paperwork in a portable plastic file box.
Medicaid paid for the drug thalidomide, which cleared the calcium from John’s bloodstream and helped his brain and kidneys recover. A blood cancer specialist at the University of Washington Medical Center told him that a bone marrow transplant might buy him time, perhaps even years. But myeloma eventually returns; the transplant doesn’t cure it. The treatment would temporarily destroy his immune system, could kill him, and would require weeks of recovery in sterile isolation. John decided against it, and was equally adamant that he’d never go on dialysis.
After six months on thalidomide, John recovered enough to move into a government-subsidized studio apartment near Pike Place Market. He loved being on his own again and wandered the market making videos of street musicians, which he’d post on Facebook. But Anne now had to drive across town to shop, cook, and clean for him.
The health plateau lasted more than a year. But by the fall of 2010, John could no longer bear one of thalidomide’s most difficult side effects, agonizing neuropathic foot pain. When he stopped taking the drug, he knew that calcium would once again build up in his bloodstream, and that he was turning toward his death.
An older sister and brother flew out from Iowa to help Anne care for him. One sibling would spend the night, and another, or John’s oldest daughter, Keely, a law student, would spend the day.
Christmas came and went. His sister Irene returned to Iowa and was replaced by another Iowa sister, Dottie, a devout Catholic. In early January, John developed a urinary tract infection and became severely constipated and unable to pee. Anne took him to the University of Washington Medical Center for what turned out to be the last time. His kidneys were failing and his bones so eaten away by disease that when he sneezed, he broke several ribs. Before he left the hospital, John met with a hematologist, a blood specialist, who asked Anne to step briefly out of the room.
Anne does not know exactly what was said. But most UW doctors are well trained in difficult conversations, thanks to a morally responsible institutional culture on end-of-life issues. Doctors at UW do not simply present patients with retail options, like items on a menu, and expect them to blindly pick. Its doctors believe they have an obligation to use their clinical experience to act in their patients’ best interests, and they are not afraid of making frank recommendations against futile and painful end-of-life treatments. When the meeting was over, the doctor told Anne that her brother “wanted to let nature take its course.” He would enroll in hospice. Anne drove him home.
John knew he was dying. He told Anne that he wanted to “feel everything” about the process, even the pain. He took what she called “this Buddhist perspective that if he suffered he would wipe out his bad karma. I said, ‘Nah, that’s just bullshit. You’ve done nothing wrong. The idea that we’re sinners or have to suffer is ludicrous.’” She looked her brother in the eye. She knew she was going to be dispensing his medications when he no longer could, and she wasn’t going to let him suffer. She told him, ‘You’re not going to have a choice.’”
Anne said she “set an intention”: not to resist her brother’s dying, but to give him the most gentle death possible and to just let things unfold. On January 15, her birthday, she and John and a gaggle of other family members walked down to Pike Place Market to get a coffee and celebrate. John was barely able to walk: Anne kept close to him so that she could grab him if he fell. It was the last time he left the house.
The next morning, a Sunday, while Anne was sitting with John at his worktable, he looked out the window and asked her, “Do you think I’ll die today?” Anne said, “Well, Sundays are good days to die, but no, I don’t think it’s today.” It was the last fully coherent conversation she had with him.
He spent most of his last nine days in bed, as his kidneys failed and he grew increasingly confused. He didn’t seem afraid, but he was sometimes grumpy. He had increasing difficulty finding words and craved celery, which he called “the green thing.” He would ask Anne to take him to the bathroom, and then forget what he was supposed to do there. His daughter Keely took a leave of absence from law school, and Anne did the same from her job at the hospital. Fellow artists, fellow chanters, former students to whom he’d taught karate, nephews, nieces, and sign-painting clients visited, and Anne would prop him up on pillows to greet them.
Anne managed things, but with a light hand. She didn’t vet visitors, and they came at all hours. If she needed to change his sheets or turn him, she would ask whoever was there to help her, and show them how. That way, she knew that other people were capable of caring for him when she wasn’t there. “The ones that have the hardest time [with death] wring their hands and think they don’t know what to do,” she said. “But we do know what to do. Just think: If it were my body, what would I want? One of the worst things, when we’re grieving, is the sense that I didn’t do enough,” she said. “But if you get in and help, you won’t have that sense of helplessness.”
Each day John ate and spoke less and slept more, until he lost consciousness and stopped speaking entirely. To keep him from developing bedsores, Anne would turn him from one side to the other every two hours, change his diaper if necessary, and clean him, with the help of whoever was in the room. He’d groan when she moved him, so about a half an hour beforehand, she’d crush morphine and Ativan pills, mix them with water as the hospice nurse had showed her, and drip them into John’s mouth.
One morning her distraught brother Steve accused her of “killing” John by giving him too much morphine—a common fear among relatives, who sometimes can’t bear to up the dose as pain gets worse. At that moment, the hospice nurse arrived by chance, and calmly and gently explained to Steve, “Your brother is dying, and this is what dying looks like.”
The death was communal. People flowed in and out, night and day, talking of what they loved about John and things that annoyed them, bringing food, flowers, candles, and photographs until John’s worktable looked like a crowded altar. Buddhists lit incense and chanted. Someone set up a phone tree, someone else made arrangements with a funeral home, and one of the Buddhists planned the memorial service.
Most of the organizing, however, fell to Anne. It may take a village to die well, but it also takes one strong person willing to take ownership—the human equivalent of the central pole holding up a circus tent. In the final two weeks, she was in almost superhuman motion. She leaned in, she said, “into an element of the universe that knows more than I know. I was making it up as I went along. People contributed and it became very rich.
“That’s not to say there weren’t times when it was phenomenally stressful. I was dealing with all the logistics, and with my own mixed emotions about my brother. I was flooded with memories of our very complicated relationship, and at the same time I knew my intention was that he be laid to rest in the most gentle way possible.”
Hospice was a quiet support in the background. Over the two years of his illness, John’s care had perfectly integrated the medical and the practical, shifting seamlessly from prolonging his life and improving his functioning— as thalidomide and the doctors at UW had done—to relieving his suffering and attending his dying, as the hospice nurses and those who loved him had done.
There were no demons under the bed or angels above the headboard. Nor were there beeping monitors and high-tech machines. His dying was labor-intensive, as are most home deaths, and it was not without conflict.
A few days before he died, two siblings beseeched Anne to call a priest to give John last rites in the Catholic church. “It was a point of love for my siblings. They were concerned that John was going to burn in hell,” Anne said. “But John hated priests.” In tears, Anne called the Seattle church that handled such requests, and the priest, after a brief conversation, asked her to put her sister Dottie on the phone. Yes, Dottie acknowledged, John was a Buddhist. No, he hadn’t requested the sacraments. Yes, his children were adamantly opposed. No, the priest told her, under the circumstances he couldn’t come. It wasn’t John’s wish.
Ten days after the family’s last walk through Pike Place Market, the hospice nurse examined John early one morning and said, “He won’t be here tomorrow.” She was seeing incontrovertible physical signs: John’s lips and fingertips were blue and mottled. He hadn’t opened his eyes in days. His breathing was labored and irregular, but still oddly rhythmic, and he looked peaceful. The hospice nurse left. Anne, helped by John’s daughter Keely and his sister Dottie, washed and turned John and gave him his meds. Then they sat by his side. Anne had her hand on his lap.
“It was January in Seattle,” Anne said. “The sun was coming through the window and we could hear the market below beginning to wake up. We were just the three of us, talking and sharing our stories about him and the things we loved and didn’t love, the things that had pissed us off but now we laughed about. I can’t ever, in words, express the sweetness of that moment.
“He just had this one-room apartment with a little half-wall before the kitchen. I walked over to put water on to make coffee, and Keely said, ‘His breathing’s changed.’”Anne stopped, ran over, sat on the bed, and lifted her brother to a sitting position. He was light. She held him close, and during his last three breaths she chanted Nam Myoho Renge Kyo, as her brother had always done, three times, whenever he left his house. “I was really almost mouth-to-mouth chanting, and he died in my arms,” she said. “We just held him, and then my sister Dottie said her prayers over him.”
Anne sat next to her brother and said, “John, I did well.”
“I know he would not have been able to orchestrate it any better than how it unfolded,” she said.
“It was a profound experience for me. I realized what a good death could be.”
Dr. Susan MacDonald reflects on ‘Leo’ and whether she should have told him about assisted death
By Ariana Kelland
Susan MacDonald can’t quite pick one reason why Leo sticks with her, pushing her to put pen to paper to tell the story of her patient, and how she feels she failed him.
Asked what sets Leo — a pseudonym — apart from the rest, the palliative-care doctor shakes her head and sets her gaze away, “About Leo … I think, for one, I really liked him. I just really liked him.”
The second fact, MacDonald said, is that his death — suicide by taking his own opioids for insufferable pain — was not his only option.
Medically assisted death would have allowed Leo to die without having health-care professionals standing over him in a fruitless attempt at reversing his overdose, she said.
“He was such an intensely private person and his death was so public, and it didn’t need to be that way,” MacDonald said. “There were options. It just really struck me and made me think.”
MacDonald, an associate professor of medicine and family medicine at Memorial University of Newfoundland, reflected on her patient and what she could have done differently, in an article in the Canadian Medical Association Journal, titled Leo Died The Other Day.
The patient died within the last couple of years, MacDonald said, unable to comment further due to physician–patient confidentially.
To raise — or not to raise — the option of assisted dying
For five months, she and Leo worked hard to control his intense nerve pain. But Leo’s death was inevitable. He had cancer, and by MacDonald’s estimation, had only weeks — maybe months — to live.
Whether it was the physical pain that became too unbearable or the emotional struggle of his impending death, MacDonald doesn’t know why he took his own life.
“It was a very distressing clinical case for me because I felt, at the end of the day, I hadn’t done the best I could for this particular patient,” MacDonald said.
“It was a reflective exercise for me to look back and say, ‘What could I have done better? Where are the problems? And what do we need to do about it?'”
MacDonald said she never raised medically assisted death as an option for Leo. Neither did he. But she wonders if some patients want to bring it up but can’t.
Medically assisted death in Canada is legal. However, MacDonald said, there are no strict guidelines on how a doctor should broach the topic with a patient.
Changing the way she does things
Until Leo’s death, MacDonald would wait for the patient to bring it up, but the manner in which he died has her pausing for second thought.
“There may be people like Leo, who could avail of that option if they knew about it or if it was offered to them,” she said.
“On the other hand, you have the potential to do harm by raising that question,” she said, adding doctors run the risk of offending patients by even mentioning assisted dying as a option.
“I’ve been doing this for 25 years now, and I still haven’t figured out always the right thing to say and the right thing to do for people.”
MacDonald hasn’t gotten many more inquires about medically assisted death since it was legalized, she said. “Not nearly as many as you’d think.”
Now, as she continues caring for those whose deaths are inescapable, she has Leo to think about.
In recent years, many Americans have begun looking for new ways to approach death. The death-positive movement supports people who prefer to die at home, and even those who wish to care for the bodies of loved ones the way many families did before the rise of the funeral industry. Historian Karol K. Weaver took a close look at that earlier approach, studying the business of death in early nineteenth century Pennsylvania, when care for the dying and dead fell mostly to women.
In those years, Weaver writes, watchers or watch-women—sometimes also referred to with the more generic term “nurse”—tended to the dying. These might be friends, family members, or hired help.
The watchers offered physical care and prayer, and organized visits by clergy and loved ones. Another important part of their job was observing the attitude of the dying person. If they could report a Good Death—characterized by courage and faith—it would comfort the other survivors. On the other hand, a Bad Death filled with struggle and pain could make for a cautionary tale aimed at the insufficiently pious.
Weaver writes that the final and most important job of a watcher was to verify that her charge was dead, observing the cessation of breath and even shaking the body to be sure no life remained.
Once the watcher’s work was done, “layers out of the dead” would wash, dress, and groom the body. They would also close the mouth of the deceased, using a tied cloth or a stick propped between the chin and breastbone, and use coins or other objects to keep the eyes closed. Layers out might also perform the skilled jobs that would later fall to undertakers, such as removing internal organs, blocking orifices, and slowing putrefaction by applying alum-covered cloth or filling body cavities with charcoal.
Like watchers, some layers out were unpaid family members or friends, but others were paid professionals. Looking at Philadelphia city directories from the early nineteenth century, Weaver found business listings for these women. Sometimes, they also advertised themselves as nurses or midwives—jobs that involved intimate care in a domestic setting just as laying out the dead did. Some listed themselves as “widows” in the directories. Weaver writes that this title suggested their connection with death and also explained the lack of a husband’s income that forced them to work for money.
Over the following decades, women’s death work declined. Increasingly, people died in hospitals rather than at home. With the Civil War came the need to transport Union soldiers’ bodies home, inspiring the rapid growth of undertaking as a business—often a father-and-sons affair. Now, families had a one-stop shop for coffin, burial plot, hearse, and the care and preservation of the body.
By 1867, the Philadelphia directory listed 125 male undertakers, one female undertaker, and four female layers out of the dead. The death industry as we know it today had been born.
Nursing requires hands-on training. But research has found that university curriculum often goes light on one of life’s universal experiences — dying. So some colleges have gone to new lengths to make the training more meaningful.
There’s a sound near the end — the death rattle. People stop swallowing. The lungs fill up. There can be involuntary moaning.
“So you get all that noise. And that’s really distressing for family members,” Professor Sara Camp of Nashville’s Belmont University says.
Camp and other nursing instructors at Belmont wear headsets and watch video monitors in a dark closet. The sounds they make emerge from realistic robots lying in hospital beds on the other side of the wall. The instructors also control the stats for the robots’ breathing, pulse and blood pressure.
“They’re really comfortable in their skills, like putting in IVs and giving medications,” Camps says. “In this one, they have to focus on communication, when there’s not that much to do. It challenges them.”
There are family dynamics to navigate, like explaining to grown children how their mother signed a do-not-resuscitate order. They have to balance caring for the dying patient and attending to the patient’s family.