One by one, their names were recited as family members clutched one another’s hands and silently wept.
Seventeen men and women had died within the past year at Gray Health & Rehabilitation, a 58-bed nursing home. Today, their lives were being honored and the losses experienced by those who cared for them recognized.
Death and its companion, grief, have a profound presence in long-term care facilities. Residents may wake up one morning to find someone they saw every day in the dining room gone. Nursing aides may arrive at work to find an empty bed, occupied the day before by someone they’d helped for months.
But the tides of emotion that ripple through these institutions are rarely openly acknowledged.
“Long-term care administrators view death as something that might upset residents,” said Dr. Toni Miles, a professor of epidemiology and biostatistics at the University of Georgia. “So, when someone passes away, doors are closed and the body is wheeled discretely out the back on a gurney. It’s like that person never existed.”
At Gray Health’s memorial service on this warm, sunny day, a candle was lit for each person who had died. Their images — young and vibrant, then old and shrunken — flashed by in a video presentation. “Our loved ones continue to live on in the memories in your hearts,” Rev. Steve Johnson, pastor of Bradley Baptist Church, said from a podium.
Dozens of family members gathered outside, each holding a white balloon. At the count of three came the release. Cries of “I love you” echoed as the group turned their faces to the sky.
Miles wants to see bereavement openly acknowledged at facilities throughout Georgia to end what she calls “the silence surrounding loss and death in long-term care.” Following in-depth discussions with more than 70 staffers, residents and family members at nine facilities in central Georgia, she has created two handbooks on “best practices in bereavement care” and is gearing up to offer educational seminars and staff training in dozens of nursing homes and assisted living residences across the state.
“Dr. Miles’ work is incredibly important” and has the potential to ease end-of-life suffering, said Amanda Lou Newton, social services team leader at Hospice of Northeast Georgia Medical Center.
Fraught reactions to loss and death are common among nursing assistants and other staff in long-term-care facilities, research shows. When feelings aren’t acknowledged, grief can go underground and lead to a host of physical and psychological symptoms, including depression, distancing and burnout.
Joanne Braswell, director of social services at Gray Health, remembers a resident with intellectual disabilities who would stay in Braswell’s office much of the day, quietly looking at magazines. Over time, the two women became close and Braswell would buy the resident little gifts and snacks.
“One day, I came in to work and they told me she had died. And I wanted to cry, but I couldn’t,” Braswell recalled, reflecting on her shock, made more painful by memories of her daughter’s untimely death several years earlier. “I promised myself never again to [become] attached to anyone like that.” Since then, when residents are actively dying, “I find myself pulling away,” she said.
Sylvia McCoullough, 56, came to Gray Health’s memorial ceremony for her father, Melvin Daniels, who died on April 19 at age 84.
Two years earlier, not long before her mother passed away, McCoullough had realized that her father had dementia. “He was the strong one in our family. … He always took care of us,” she said, explaining that her father’s confusion and hallucinations shook her to her foundation.
“I cry all the time,” McCoullough continued, looking distressed. “It’s like I’m lost without my mom and dad.” But Gray’s ceremony, she said, brought some comfort.
Edna Williams, 75, was among dozens of residents at the event, sitting quietly in her wheelchair.
“I love to recall all the people that have passed away through the year,” said Williams, who sends sympathy cards to family members every time she learns of a fellow resident’s death. On these occasions, Williams said, she’s deeply affected. “I go to my room” and “shed my own private tears” and feel “sadness for what the family has yet to go through,” she said.
Chap Nelson, Gray Health’s administrator, has instituted several policies that Miles’ bereavement guide recommends as best practices. All staff members are taught what to do when a resident dies. When possible, they’re encouraged to attend the off-site funerals. Every death is acknowledged inside the building, rather than hidden away.
If one of his staff members seems distressed, “I go out and find them and talk to them and ask how I can help them with the feelings they may be having,” Nelson said.
Other best practices include offering support to grieving residents and relatives of the deceased, recognizing residents’ bereavement needs in care plans, and having a protocol to prepare bodies for final viewing.
Some facilities go further and create unique rituals. In one Georgia nursing home, staff members’ hands are rubbed with essential oils after a resident’s death, Miles said. In Ontario, Canada, St. Joseph’s Health Centre Guelph holds a “blessing ritual” in the rooms where people pass away.
Fifteen miles away from Gray, in Macon, Ga., Tom Rockenbach runs Carlyle Place, an upscale facility with four levels of care: independent living, assisted living, memory care and skilled nursing services. Altogether, about 325 seniors live there. Last year, 40 died.
“We don’t talk about it enough when someone passes here; we don’t have a formal way of expressing grief as a community,” Rockenbach said, discussing what he learned after Miles organized listening sessions for staff and residents. “There are things I think we could do better.”
When a death occurs at this continuing care retirement community, an electric candle is lit in the parlor, where people go to pick up their mail. If there’s an obituary, it’s placed in a meditation room, often with a sign-in book in which people can write comments.
Since working with Miles, Rockenbach has a keener appreciation for the impact of death and loss. He’s now considering starting a support group for staff and hosting a death cafe for residents where “people could come and hear what other people have gone through and how they got through it.”
Tameka Jackson, a licensed practical nurse who has worked at Carlyle Place for eight years, became distraught after the death of one resident, in his 90s, with whom she had grown close.
“Me and him, we were two peas in a pod,” she said, recalling the man’s warmth and sense of humor.
Over time, the old man confided in the nurse that he was tired of living but holding on because he didn’t want family members to suffer. “He would tell me all kinds of things he didn’t want his family to worry about,” Jackson said. “In a way, I became his friend, his nurse and his confidante, all in one.”
One morning, she found his room was bare: He’d died the night before, but no one had thought to call her. Jackson’s eyes filled with tears as she recalled her hurt. “I’m a praying person, and I had to ask God to see me through it,” she said. “I found comfort in knowing he knew I genuinely loved him.”
Jan Peak, 81, was dealing with grief of a different sort in mid-May: Her husband, David Reed, who had rapidly advancing Parkinson’s disease, had recently moved to Carlyle Place’s assisted living section from their independent-living apartment— signaling the end of their time living together.
Like other people at Carlyle Place, Peak had a lot of adjusting to do when she moved into the facility five years ago after her first husband had died. “Lots of people here have come here from somewhere else and given up their homes, their friends and their communities, often after the death of a spouse,” Peak said. “Once you’re here, loss — either your own or someone else’s — is around you continually.”
She found herself turning to David, whose first wife had died of a brain tumor and whom she describes as a “soft, sweet, wise man.” Before they married, they talked openly about what lay ahead, and Peak promised she would carry on.
“No one can stop the heartache that accompanies loss,” but “my friends and family still need me,” she said.
In late May, David sustained a severe head injury after falling and died. “I miss him greatly as we were very happy together,” Peak wrote in an email. “I am doing as well as I can.”
If you would have asked me or many of the women I work and study with that question a few years ago, most of us would have been stumped. However, since then, we’ve all taken the plunge into this previously obscure line of death work.
I heard my death doula call in 2017, soon after I decided to leave mortuary school. Thankfully, before I quit the program’s classwork, I had the opportunity to interview a local death midwife about her work. Her desire to educate the public about death and death planning inspired me to look into the field.
After a year or so of research, I was gifted entrance into Quality of Life Care’s online death doula mentoring certificate program from my parents. Since starting the program, I created Gather the Leaves LLC, an end-of-life care business that serves pets and people.
I also had the opportunity to interview two women who practice in the alternative end-of-life field. Read on to discover what we do.
When Deanna Cochran’s mom was diagnosed with gastrointestinal cancer, she was distraught for two reasons: Cochran was upset because her mother was very ill; and as a hospice nurse, Cochran had insider knowledge about the disease.
Cochran knew that the people who came into her care over the years experienced a lot of suffering before receiving hospice care. “This fear was in me with my mom,” Cochran says.
“I thought, ‘holy cow… I know what people deal with before they get to hospice; [and] my mom doesn’t want to be on hospice.’”
Cochran knew her mother was going to die, that her mother did not want to die, but that death was inevitable. So, Cochran implemented a unique care program.
Cochran did everything she could to keep her mother out of the hospital. Cochran helped implement a palliative care program (specialized medical care for people with a serious illness) for her mother. “There was no medical system set up for [palliative care] where she was, but we did it on [our own] with friends, family, and my mom’s physician,” Cochran explains.
Cochran’s mom ended up dying within five weeks of receiving her diagnosis. When she died, Cochran realized that she and the team she helped form had “midwifed” her mother the way birth midwives help expectant and new mothers.
In the past, Cochran had received exquisite care from birth midwives during the birth of her second child. The midwives, with the help of a good doctor, helped Cochran heal from the trauma she experienced during her first child’s birth.
“When my mom died, all of that flooded back because it was so traumatic,” Cochran says.
“[And] I [saw] first hand how traumatic advanced illness and dying is for people in the medical system. [So, I thought I could] be like these birth midwives, and provide healing from some of that trauma.”
Cara Schuster didn’t know anything about death doulas, death midwifery, or green burial until a few years ago. “I was going through a personal journey and doing some shamanic work [and] my practitioner had told me to do a week-long journey,” Schuster says.
“During that journey, I came across death midwifery.”
Prior to learning about alternative death work, Schuster didn’t have a lot of personal experience with death besides losing grandparents, pets, and friends. “I don’t think I experienced anything more than your average person at the age of 40,” she says. “I did lose my father when I was a baby, so, I did have a very interesting concept of death from a young age.”
What death doulas do
Death doulas provide a wide range of services; all are non-medical. Some doulas only “sit vigil,” meaning they provide emotional support and a caring presence for the dying and the dying’s family. Other doulas enter a client’s home well before hospice is involved and provide practical help in the home. And some doulas are well-versed in helping people plan for their death; they prepare advance directives, wills, and more.
Since I only recently completed my coursework and started volunteering for hospice, I tend to provide practical services. However, as I gain more experience and sit bedside at more vigils, I will expand my services accordingly.
Currently, Schuster, who is a certified death midwife and doula, considers herself an end-of-life guide because she is not helping people transition. “It hasn’t been my experience thus far,” she says. However, Schuster knows her work is ever-evolving.
So far, Schuster has assisted two families with home funerals. Both of those families had different needs she helped met. “I was with one of the families for a week off and on and was present through the transition of the passing—I had known that person for 20 years,” she adds.
Cochran has practiced as a death doula since 2005, but has worked as a registered nurse in end-of-life care within and outside of hospice since 2000. She currently trains end-of-life doulas online and in-person at various workshops and conferences throughout the United States.
Many people tend to wonder how death care industry workers “do it,” and I get it.
Death, loss, and grief are incredibly tough things to deal with. However, most any death doula or end-of-life caregiver will tell you that their work has many redeeming qualities.
“The elation I have felt from helping these two families—there’s nothing that can compare to any of the work I’ve done,” Schuster says.
“It was incredibly fulfilling.”
Cochran adds that she continues to do this tough work after 18 years of service because it’s her gift to give to the dying. “I’ve tried to not be a hospice nurse and death doula more than once because maybe I had seen too many people die within a couple of days…” But she says that feeling never lasts.
“What I’ve realized in all this is that I have to care for me, because that thing inside of me that wants to help you doesn’t go away,” Cochran explains.
“I have so much to give. It’s a gift from God—I have nothing to do with it.”
And although I’ve yet to serve an actual client through the dying process, my studies and volunteer work through hospice compel me to agree with Schuster and Cochran’s sentiments.
This work isn’t easy—human emotions and death are often messy. But the support death doulas, midwives, and guides provide families can truly help many people find some peace and closure during an indescribably hard time. And that’s beautiful in its own way.
Sometimes, we make assumptions about another person’s grief. We may assume, for instance, that when a spouse or partner dies, the person left behind feels a deep sadness and longing. Or we may judge someone for lingering in their grief instead of moving on. Other times, we may not even acknowledge a death, perhaps because it was caused by suicide or a drug overdose. We might also minimize, ignore, or simply not recognize someone’s grief.
These various reactions and assumptions are examples of what Carol Schoneberg refers to as disenfranchised grief. As an end-of-life educator and bereavement services manager at Hospice of Southern Maine, Carol has had more than her fair share of conversations with people about how they are grieving (or not).
“Establishing definitions of proper and improper mourning techniques is a way of excluding certain individuals, thereby disenfranchising them and their grief,” she explained. “Disenfranchised grief presents some complications that are not always present in other grieving processes. When disenfranchised grief is not legitimized by others, the bereaved person may be denied access to rituals, ceremonies, or the right to express their thoughts and emotions.”
An anonymous story
One of Carol’s clients did not feel a deep longing when her husband died a little over a year ago but did experience plenty of other emotions. She agreed to share her story because she hopes it will help other people confront their own feelings. However, she prefers to remain anonymous.
We remained together although as years passed he participated less and we lived parallel lives. I know there are other people who may not have had that same experience, but there are always bits and pieces of living with someone that are not all wonderful. When you’ve been married 50+ years, people tend to believe you are devastated, but there were times when I had wished he’d just go away and there’s shame in that.
Carol has found that most people would be too ashamed to admit such feelings, which is why seeing a bereavement counselor can be so helpful.
Most people are ashamed or embarrassed to say, hey, wait a minute, I don’t want anybody here to think that I’m broken-hearted about what happened. I’m sad, it is definitely causing a difficult experience, but don’t make assumptions about what I’m feeling. Those people may need permission to acknowledge their feelings and this blog post may help to do that. They may see themselves and it might give them the courage to feel what they do and not have shame.
Her client’s husband was in Gosnell (Memorial Hospice House) for three days before he died. Afterward, things were so overwhelming, she almost felt like a non-participant.
During this time I was present but paralyzed and exhausted. It was beyond me. And then slowly, through talking to folks from hospice, I began to see that it was ok and that I could sit and listen and reflect on what I was feeling.
She also took the time to reflect on an incident that occurred when her husband was hospitalized for surgery and made the decision to speak up to hospital officials. After his surgery, he was sent home against her protests that it was too soon and he was much too ill. She was right and soon after, her husband was admitted to Gosnell. The incident bothered her so much that with some help from her primary care doctor, she met with a group of hospital officials.
I couldn’t let it slide, it was so important. Sitting there, I learned that it was circumstances, it wasn’t any one person’s fault and now I understand why it happened.
The fact that she spoke up and followed through helped her client move on, explained Carol.
If you’re left with feelings that something did not happen the way it should have in the care of your person, that can easily become the focus. Often there’s anger and that can become a diversion from letting the grief start to settle or people want to place blame. It’s easier than the grief. Some people never get past that and never go through their grieving process, whatever it is. My client spoke up and she was heard.
Carol’s client took a bold step but she takes exception to the word grief, at least as it pertains to her.
I’m not happy with the word grief because it brings with it an assumption, but I don’t have another one. I think of it as a journey. The biggest thing for me is the change. It’s not always tears, it’s not always unhappiness, it’s a mixed bag. At this time, it’s freedom that I feel and the responsibility that goes with that. What do I do with this freedom, these possibilities, these opportunities? I’m still finding my way.
From Carol’s perspective, everything and anything a person feels after the death of someone who was significant in his or her life is normal.
What I hope that people will come away with after reading this is the realization that there are many kinds of losses and many kinds of grief. Not everybody’s experience is the same, so don’t make assumptions. It’s human to go there, but the minute you start finding yourself making an assumption about someone or judging them, just remind yourself that you don’t know.
Sadness isn’t always about grief
Carol herself has experienced disenfranchised grief related to the death of her father.
I think I saw him four times in my life and when he died, I can’t say I had an ounce of sadness. I felt flat. But the sadness came in when I revisited the sadness I had spent my whole life in front of — the sadness of not having a father. I held the fantasy for 44 years that we would have this deathbed reconciliation and we didn’t.
When there’s a relationship that was either verbally or emotionally abusive or the person was absent in your life, there’s no deep connection, only years of hurt or dissatisfaction, you may grieve what never was. Those things don’t leave, they’re part of who we are. Some people wrestle with anger over it. I don’t, just sadness.
Another emotion that some people wrestle with when a loved one dies is guilt. They feel guilty because they didn’t deal with something when the person was still alive or believe that something they did or didn’t do somehow contributed to the person’s death.
“The classic example,” said Carol, “is if my loved one took his or her life and what did I miss? This wouldn’t have happened if I just fill in the blank and that feeling of I am responsible for what happened. They may feel judged, which makes their grief even more complicated. When there is this extra layer, it needs to be worked on before you can move freely to the next phase of the grief journey.”
A death that might go unrecognized
And what about grief that may go unnoticed or downplayed in some way? There are a number of reasons why that might happen — one of them is if you lose a pet. Fortunately, Beth Van Gorden has had the opposite experience. She lost her dog, Bonnie, about a month ago and people have been kind and thoughtful, especially the kids in her neighborhood who told her they were sad to see her without Bonnie.
“I had her for 11 of her 15 years,” Beth told me. “She was with me 24/7 and gave me unconditional love. I live alone so she was my companion and also a vehicle for me to get out of my house four times a day, interacting with my neighbors and keeping abreast of what was going on in my neighborhood.”
The loss of a friend
Beth also knows what it’s like to lose a human friend. Eileen Rubin, who was one of her closest friends, died of cancer in 2015. Beth made regular trips to North Carolina to help Eileen and her family when she was ill and was with her when she died.
“I just knew that she didn’t have much time left,” she said. “It was intuition. I was in Maine and I decided to go down. And she waited. She waited for me. It was an incredible honor to be with her. Her son was holding her and she took her last breath. I think she needed me to be there. I think it was part of our deal in this life that I was going to be there.”
Beth keeps in touch with Eileen’s family and found solace and support in her friends.
“We’ve all gotten to ages where we friends who have died,” she explained. “Some of us have the same friends who have died and so, we get to share that. I felt very fortunate that I had a group of people who could be supportive. I think that’s crucial. I think that for all of us, grief is different and nobody processes it in exactly the same way and it all needs to be respected.”
How to support someone who is grieving
Beth was fortunate to get the support she needed when Eileen died and is getting now with the death of her dog Bonnie. Carol Schoneberg’s client benefitted from what she called the “gift of a support system” that extended beyond family and friends. She highly recommends outside support, such as hospice and some sort of spiritual support — a priest, a rabbi, a minister. Someone who has your perspective and your back.
We don’t always know what to say or how to act when we’re in the presence of someone who is mourning. Sometimes our foot goes right into our mouth and other times our feet take us off in the opposite direction and we don’t say one word at all. Not even “I’m sorry for your loss”.
Everyone I interviewed for this series passed along some advice about things people said or did that helped and things that didn’t. I’ll share their wisdom in the final segment of Living With Grief.
Talking about death is hard. And usually it’s really, really hard. Maybe it’s because—much like the process of dying itself—it requires us to be vulnerable, to be honest, to come to terms with a denial we engage with, to varying degrees, our whole lives.
“Death happens to everybody, yet somehow we’re surprised by it,” says hospice and palliative care specialist BJ Miller, MD. “I’m shocked at how many patients and family members have not only had to deal with the pain of sickness and loss, but on top of that they feel bad for feeling bad. They’re ashamed to be dying, ashamed to be sick. There’s a horrible unnecessary suffering that we heap on ourselves and each other for nothing.”
The more intimate we get with the idea of dying, the closer we come to folding it into the fabric of our daily lives, the better off we’ll all be, Miller says. Advice on how to die well is really no more than advice on how to live well, with that unavoidable reality in mind.
A Q&A with Dr. BJ Miller, MD
Q What is a good death?
It’s a deeply subjective question, and the best way I can answer objectively it is to say a good death is one that’s in keeping with who you are as a person; a good death is consonant with your life and your personality.
For example, most people say they want to die at home, that they want to be free from pain. That usually means not having a bunch of medical interventions happening at the end. Effort is put toward comfort instead. But I also know plenty of people who say, “No, no, no. I’m the kind of guy who wants to go down swinging,” or “I’m looking for a miracle,” or whatever it is. And for them, a good death may very well be in the ICU with all sorts of interventions happening, anything that’s going to give them a chance, because they see themselves as fighters and they want to go out fighting.
Q What’s the role of hope in dying?
Hope is a beautiful, powerful, and very useful force. It’s what gets most of us out of the bed in the morning. It’s not a question of whether or not you have hope; the question’s more: What do you hope for? The work is harnessing your hope for something that’s attainable or for something that serves you.
When I’m talking to a patient, and I ask them, “What do you hope for?” If they say, “Well, I hope to live forever,” we can label that a miracle pretty safely. I can say, “I’ll hope for that, too, but if we don’t get that, and if time is shorter than you want, then what do you hope for?” Because hope needs to be qualified. So they’ll say, “Ah, well, if I’m not going to be around much longer, well, then I really hope to make it to my grandson’s graduation in the summer,” or “I really hope to get through the World Series,” or whatever it is.
It’s tempting to say that hope is this thing that you either have or you don’t have. That when you don’t have it, then that’s like giving up or letting go. But it’s not. You can hope and understand you’re dying at the same time. It’s very possible when someone comes to terms with the fact that they’re dying soon, that they hope for a painless death, or they hope to die on a certain day. Those are realistic hopes; it’s a matter of channeling that big force.
Q In what ways is our health care system not equipped to handle dying well?
In the last hundred or so years, what’s become the norm for end-of-life care in the West is a very medicalized death. Hospitals and doctors have become arbiters of death; it used to be a much more mystical thing involving nature and family and culture. But of late, medicine in all of its power has co-opted the subject, and so most people look to their doctors and hospitals as places that forestall death.
We’re spending a lot of time—when it’s precious—in the hospital or at a doctor’s office. You spend a lot of time navigating medications. You’re spending a lot of time hanging on every word the doctor says. That’s a problem in that it’s not really what most of us want. But it goes that way because we’re afraid to confront the truth. We’re afraid to talk about it, so we all end up in a default mode. The default mode is in the hospital with a bunch of tubes and medicines and someone keeping your body alive at any cost. That has become the default death, and that’s not what most people would consider a good death.
Q How do you approach that conversation of getting someone to accept the reality of their sickness and also the uncertainty that might come with it?
It’s really hard, and it’s a really complicated dynamic. Most people don’t want to hear that they’re dying, so they don’t listen to their doctors, and most doctors don’t want to tell people that they’re dying.
Because people aren’t primed to hear it, and doctors aren’t primed to say it, what happens is there’s this little complicit dance between doctors and patients and family members. Everyone just kind of tries to scare one another off, so they don’t mention death and they instead lean on euphemisms. You’d be shocked at how many well-educated, thoughtful people come toward the end of their life and find themselves surprised that they’re dying.
A palliative care doctor starts the conversation by getting a sense of where the patient is. What’s their understanding of their illness? I typically invite a conversation with open-ended questions, like “Well, tell me about what’s important to you. Tell me about what you would let go of to live longer.” I get to know the person. When I feel safe with them and we’re speaking the same language, then I can broach the subject of time, and I can say, “Well, you know, because of X, Y, or Z diagnosis, whatever else it is, at some point this disease is not likely to be curable, and we’re going to have to turn our attention to the fact of death. Let’s prepare for it. Let’s plan for it.”
This is where death and life go together very helpfully: The way to prepare for death is to live the life you want. If you start talking to someone about how they want to die, you usually end up landing on how they want to live until they die. That’s a much less scary conversation. It’s a much more compelling conversation for people, too, and it’s more accurate.
Q What matters to most people at the very end?
There are consistent themes around this, which we know from both data and experience:
Comfort is important. Very few people are interested in suffering. Some people are, but most people want to be free from pain.
Most people want to be surrounded by friends and family. They want to be either at home or at a place they call home, a place of their choosing; some people are in the hospital for months, and that becomes their home. The people around them become their family.
Most people are spiritual and have some relationship to a creator, so most people want to be at peace with their god, to be at peace spiritually.
Most people also want to leave their family with as little burden as possible, so that means financial planning, etc. It’s very important to people that they not be a burden to their family unnecessarily.
Q Why do you think as a culture we find it so challenging to talk about death and dying?
You can kind of tell that America is a young place, in part by the way we handle aging and death. We’re terrified of it. Most cultures have been dealing with this a long, long time and have made peace with death as a part of life. Instead of falling back on institutional cultural ritualized knowledge, we’ve outsourced dying to medicine. We leave one another feeling like we’re incompetent at dying, when in fact, we have it in us. We’re just too far removed from it.
In the last 170 years or so, as a society—especially in the health care industry—we’ve been in a long romance with innovation and technology. We believe if you hang in long enough and you work hard enough, everything is solvable. That we can invent our way through anything. You hear people talk, and you realize somehow they’ve absorbed this idea that death is optional, when in fact, of course, it’s not. I notice in my practice when I’m dealing with someone who lives on a farm, someone who is close to nature and its cycles, that they know that death is a part of life. Inherently. They’re around it all day, every day, whether it’s slaughtering an animal or raking up leaves. They haven’t removed themselves from nature’s cycles, so death makes total sense to them. Those of us who are living more technologically driven lives often lose that intuition, that gut feel, and so nature surprises us. Nature scares us.
Part of the problem, too, is what one of my colleagues calls the “medical-industrial complex”: Health care is an enormous business in this country. As long as we decide to consider health care a business and not a civil right, it’s subject to all the fickleness of capitalism and it requires marketing. When I see hospitals advertised to the public as the place where miracles happen, a place where anything’s possible, you know, that’s an advertisement. That’s marketing. That’s not real. We’re not incentivized to be honest with one another in this way.
Q How can you stay in the world and retain a sense of purpose toward the end of life? How much does that matter?
This question of purpose is related to the question of being a burden, and both come up a lot. First, let’s all get better at being vulnerable because we are vulnerable. If you’re in the course of a normal life, any one of us is going to be a burden to someone sometime. It’s just not possible to only give care and not need to receive it. Getting more savvy with needing one another is one way to turn down the pain.
We can also learn to repurpose ourselves. I meet people often who have had a single kind of career or place within their family their whole lives. They’ve had this monolithic role, and as soon as they can no longer perform that role, they lose their sense of purpose. They have nowhere else to go, they have no other interests, they don’t believe they can repurpose themselves, and they lose touch with reality really quick. This is one of the ways we die before we actually die.
But you can find that purpose again, in a different way. I’m working with a family right now, and the mother, she’s about seventy years old, and she’s been a teacher much of her life. She’s been the one in the family who’s always giving care. Now it’s her turn to receive care, and she’s really struggling, and she’s not good at it. She’s gone seventy years without needing much from others, and it shows. In her mind, she’s lost her role as the caregiver. So what we’ve been doing of late is saying, “How can we repurpose your life as a teacher? What can you teach your grandchildren now?” We’re learning she can teach her grandchildren a lot about death. She can teach her grandchildren a lot about being vulnerable and the courage it takes to be vulnerable. She can teach her kids how to communicate with someone who’s suffering. These are enormous lessons, and all of a sudden, she doesn’t feel like she’s being stripped of everything important to her. She’s seeing that she still has some creative life in her and she can take old skills and reapply them in this new way.
Purpose is a powerful force, but there’s value in life beyond purpose. In America, life is all about productivity. You know you’re relevant in this society as long as you can produce, and as your ability to produce reigns, so does your employment and worth. Aging then becomes this process of getting out of the way, and that’s pretty lame. It’s on all of us to see that there’s something bigger to life than our jobs or our single role or whatever it is—life is much more interesting than that. We are much more interesting than that. Another way to help one another repurpose is to actually let go of the need to be so dang productive. Get in touch with the mystery of life and the power of just being at all. That, I find, is a very, very useful thing for people who feel purpose is slipping through their fingers.
Q What advice do you have for family members or loved ones who are helping with end-of-life care?
There are so many layers to this: There are practical burdens, emotional burdens, financial burdens. All need addressing.
Hospice is an incredible service that can dramatically unburden the family. When your health is failing and you need more help with the activities of daily living, family members can step in to do that, or perhaps it’s time to hire a home health aide. But very often what ends up happening is people wait too long to invite hospice into their homes, because they wait way too long to face this reality, and then it’s too late to do much. So one piece of advice I stress to everyone is to think about home health care and hospice early. Even if you think death is years away but are still dealing with a serious illness, call hospice sooner rather than later. Just request an informational interview. Get a sense of what they can do and broach the subject as part of your planning. You don’t have to sign up anytime soon.
The other big emotional piece is to fold death into our view of reality so that we don’t feel guilty that Mom’s dying. It’s always amazing to me how many creative ways we find to feel horrible. I watch family members blame themselves for the death of a loved one all the time, even though there’s nothing that could be done to forestall it. We view death as a failure, and families end up absorbing that sense of failure. It’s heartbreaking. And if there’s one thing we can’t fail at, it’s death. You are going to die. There is no failing.
We all need to get a lot more savvy with grief. Grief is around us all the time. We’re always losing something. A relationship, hair, body parts. Loss is all over the place, and our American way is to kind of pull yourself up by the bootstraps. There’s something to that, but we’ve got to get better at just letting ourselves feel sad. We have to give one another more space for grieving. Grief is just the other side of the coin of love. If you didn’t love someone, it wouldn’t be so hard to lose them. Acknowledge that. Work with it. Let yourself feel it. That will help everybody involved.
We also need to push our human resources programs to help with caregiver education for family members or generous bereavement time off. That’s a big piece of this puzzle if we as a society are going to die better.
Q You’ve spoken before about your own brush with death and becoming a triple amputee. How does that experience inform your work?
Most of us have a kind of a haphazard view of reality that may not include illness or death. Illness and death can end up feeling like this foreign invader, despite the reality that they’re natural processes. My own trauma and illness gave me a wider view of the world that includes that reality, so that I wasn’t ashamed to be disabled. I was normal to be disabled. It helped me understand I was a human being for whom things go wrong. A human being for whom the body dies. That is the most normal thing in the world.
It helped me see myself in my patients and my patients in me. It’s easier for me to empathize with people who are sick and near the end because I’ve been there myself to some degree. But you don’t need to lose three limbs to relate; suffering and illness and death are hard subjects, but at the most basic level, they unite us. We all have some relationship them, and therefore we all have a lot in common.
I’m also aware that because I’m obviously disabled, I think patients, as a rule, give me some credit. I feel like I have an easier time getting to a trusting place with patients. If you take one look at my body, you know I’ve been in the bed, and I do think that is actually a great advantage for me in the work I do.
Q Have you ever felt as though you’ve failed a patient?
To be clear, most days I spend a fair amount of time talking myself out of hating myself, you know, just like most people. I’m deeply, deeply aware of all the things I can’t do or didn’t do today, or that patient I didn’t call in time before they died, or you name it. There is a long daily list of things I have to spend a moment reconciling. Usually it relates to some form of communication: I didn’t quite find a way to break through; I didn’t quite find a way to help them feel safe; I didn’t quite find a way for them to feel seen or understood my me.
Q How can spirituality help someone come to terms with death?
It depends how you define spirituality, but I might define it as a connecting force that we cannot see but have faith is there. That somehow, we’re tied into some creative force that is much larger than ourselves and that is all-encompassing and all-inclusive. If you have a spiritual framework, it’s easier for you to yield to death because you know even in your death you’re still part of something beautiful or enormous. That sense of belonging can do so much for us.
When I found myself near death, and thinking about these things and revisiting my spirituality, it became clear to me that I would be very sad to die. I don’t want to die yet. But what matters even more to me than my life or death is the fact that I exist at all, that life exists at all, and I get to feel part of that, and my death is part of that.
Q Can art play a role as well?
So much of life and death is so powerful and so huge. There’s just so much more to the world and life than what we can find in a word, so the arts can help us kind of get in touch with these larger threads, these larger forces, these things we can’t quite see or feel, a little bit like spirituality.
Expressing yourself artistically can be therapeutic, too. For people going through illness or the dying process, if they’re able to get in touch with their creative impulse and make something from their experiences, that’s an amazing way for them to participate in their life and in their illness. To turn their suffering into grist…something to paint with, essentially. It’s just very rich and fertile ground.
With architecture and design, the way we cultivate our built environment has such power in terms of how we experience life. Standing in a beautiful museum can make you feel things you wouldn’t otherwise and can help you pay attention to things that are really difficult. I would love to see the arts get more involved with the heath care infrastructure so that hospitals and nursing homes are places where you’d actually want to be, places that are beautiful or stimulating. The arts provoke the life in you, and that’s very powerful when the goal is to really live until you die.
Q How do you recommend preparing for death?
Explore a hospice and palliative care program as early as possible. Ask your doctor about it. Research local hospice agencies. There’s a website called getpalliativecare.org, where you enter your zip code and it’ll show you your options. Of course, some programs are better than others, but as a rule, these services are designed to help you suffer less, help you find meaning in your life, and help you live a full life.
Even when you’re feeling exhausted and you just want to hand yourself over to a doctor, you need to find a way to advocate for yourself. Otherwise you’re going to end up in the default mode in the health care system, and that’s going to mean ICU and machines and all sorts of things that you may not want. Your doctor is there to help you, and you need to work with them. But push your doctor: Ask them about palliative care, and if they say, “Oh, you don’t need palliative care,” ask why not. Or if you think you want to prepare with hospice, ask your doctor about hospice. What do they think about hospice? Is now a good time to start it? If they say you don’t need hospice, ask, “Why not? When would I?” Between the medical system and the training that goes into it, understand you need to advocate upstream. You’re pushing a rock up the hill.
Anywhere along the way, start saving money, period. The number one cause of personal bankruptcy in this country is health care costs, and the bulk of those people who go bankrupt because of heath care costs had health insurance. I don’t think people realize even if you have insurance, there are costs that are going to come up that you would never imagine, so if you have any capacity, just start saving. You’re going to need money toward the end of life. You’re going to need money to navigate illness.
Whether it’s in yourself or with someone you care about, reward vulnerability. Be vulnerable. Go toward it. Be with people and yourself when you’re suffering. It takes courage to be vulnerable, to get help and to give help. When it comes to your time, it’s important that you’ve learned how to receive care.
Then there’s the biggest one: Dying ain’t easy, but it’s going to happen, and there’s a lot of beauty in it. The fact that we die is exactly what makes life precious in the first place. You don’t have to love death, but try to have some relationship with it. Think about it. Contemplate it. As soon as you start doing that, the sooner you start making decisions you can live with, and you’ll avoid stockpiling a bunch of regrets. People who don’t think about death just end up assuming they’re going to live forever, until it’s too late to live that life they wanted to lead.
BJ Miller, MD is a hospice and palliative care specialist who sees patients in the Cancer Symptom Management Service of the UCSF Helen Diller Family Comprehensive Cancer Center. After studying art history as an undergraduate at Princeton University, he worked for several years for art and disability-rights nonprofit organizations before earning a medical degree at UCSF. He completed an internal medicine residency at Cottage Hospital in Santa Barbara, where he was chief resident, and a fellowship in hospice and palliative medicine at Harvard Medical School, working at the Massachusetts General Hospital and Dana-Farber Cancer Institute. His forthcoming book with coauthor Shoshana Berger, a practical and emotional guide to dying called The Beginner’s Guide to the End, is due out from Simon & Schuster in 2019.
Palliative care experts say it is not uncommon for people in hospice care to perk up briefly before they die, sometimes speaking clearly or asking for food.
By Judith Matloff
Susan Linnee had not eaten for weeks by the time she entered a Minneapolis hospice on Oct. 5. A 75-year-old editor, she was dying of a brain tumor and as her body weakened, she grew confused and stuporous. But suddenly, 17 days later, she perked up and asked for what her brother, Paul, called “odd food”: dill pickles, liverwurst and seed bread. Relatives fetched the delicacies and she nibbled a few bites. More animated than in previous days, she engaged in lucid conversation. Soon thereafter, she slipped into a barely responsive state and died two weeks later.
In speaking with the medical team, her brother learned that the brief rebound his sister experienced was called an “end-of-life rally.” Palliative care experts say revivals are common, although no one knows exactly why.
“There’s great mystery around this,” said John Mastrojohn, the executive vice president of the National Hospice and Palliative Care Organization. “But everyone who works in the sector has a story.”
Anecdotally, doctors and nurses interviewed for this article said that a striking number of their dying patients had experienced a rally, also known as terminal lucidity. Bounce-backs generally last only a couple hours, but some go on for so long that the patients can take a break from a hospice for a few months.
Dr. Craig Blinderman, the director of adult palliative medicine at the Columbia University Medical Center, hears lots of accounts. Yet evidence-based data is elusive, if nonexistent, he said. Aside from the challenges of catching dying people at the moment of springing back, it’d be tough to get the medical ethics board to determine that the research would benefit the patient. This type of study would require constant drawing of blood and monitoring of patients, which runs counter to the quiet fade away that is a signature element of palliative care.
Dr. Blinderman has theories about causes, however. He postulated that as organs shut down, they can release a steroidlike compound that briefly rouses the body. In the specific case of brain tumors, swelling occurs in the confined space of the skull. The edema shrinks as hospice patients are weaned off food and drink, waking up the brain a bit.
These windows of energy can startle family members sitting at the bedside. Those who hold out hope that their loved ones may somehow recover may see the comebacks as encouraging. Some find the little flickers disturbing or even heartbreaking.
“I always provide a lot of anticipatory guidance, that you should not be surprised or alarmed or that it means that your loved one is healing,” Dr. Blinderman said. “Obviously you don’t want to dash hopes, but you have to make clear that Dad is not rising like Jesus Christ.”
Dr. Janet Bull dispenses the same advice, as chief medical officer at the Four Seasons Compassion for Life, a nonprofit hospice care organization in North Carolina. During her 18 years in the field, Dr. Bull has seen many rallies, but one in particular stands out.
“I had this one patient, he was demented for years, and then he said things near the end that blew away his mom,” she recalled with wonder. “He hadn’t had a meaningful conversation with her for 10 years.”
Physiologically, experts believe that the mind becomes more responsive when a hospice patient is taken off the extensive fluids and medications such as chemotherapy that have toxic effects. Stopping the overload restores the body to more of its natural balance, and the dying briefly become more like their old selves.
Mr. Mastrojohn speculates that the social support at a hospice can give the chronically ill more pep than in a sterile hospital where they’re hooked up to machines.
Then there’s a spiritual or psychological component, which defies scientific explanation. Hospice professionals note a compelling desire to say goodbye or bond with loved ones in those last moments. There’s no way to test this hypothesis, but there’s no way to falsify it, either.
“People know when they are dying. They have this internal gut feeling that tends to expand at the end of life, and they seek a strong final connection,” said Dr. Bull.
Other doctors nodded their heads when told about Ms. Linnee’s request for a last meal. They said that often ralliers will ask for a particular food associated with childhood or comfort. The request is generally explicit, say, a Diet Sprite rather than any old beverage.
Dr. Martha Twaddle cited the case of an Illinois woman in her 50s who was reaching end-stage heart failure. She had been barely reactive, but then sat up and asked for a hamburger famous in Skokie.
“It’s some enormous hamburger, the size of your face with all this stuff on it. She took two bites and then fell back asleep,” said Dr. Twaddle, a physician associated with the Northwestern Medical Group in Lake Forest, Ill., who has worked in palliative care since 1989.
She has had nonreactive patients jolt up to ask for a relative, or share final wishes before they die. “Sometimes they want to give instructions to the family, like, ‘Don’t forget to take care of the car.’ Something mundane but important to them.”
Palliative care experts suggest accommodating a loved one’s request, no matter how odd it may appear.
Dr. Charles Wellman, the longtime chief medical officer at the Hospice of the Western Reserve in Cleveland, has had patients who become alert only for the doctor. They will not talk for days, and then their eyes open when Dr. Wellman walks into the room. “I think they get tired and withdrawn,” he speculated. “They’re transitioning to another existence, and they have work to do on that. Maybe they get annoyed with family, but they might make an effort to respond to the doctor.”
But rallies frequently revolve around a relationship, particularly if the patient is waiting for a child to come from out of town to pay last respects.
“We had one patient whose son was in the military,” Dr. Twaddle said. “There was no way the son could get to her for a month. The woman was out of it during that time. He finally came. She responded, and then passed 15 minutes later.”
By Matt Pickles Maths, science, history and death?
This could be a school timetable in a state in Australia, if a proposal by the Australian Medical Association Queensland is accepted.
They want young people to be made more familiar with talking about the end of life.
Doctors say that improvements in medicine and an ageing population mean that there are rising numbers of families facing difficult questions about their elderly relatives and how they will face their last days.
But too often young people in the West are not prepared for talking about such difficult decisions. There is a taboo around the subject and most deaths happen out of sight in hospitals.
Pupils might have reservations about lessons in death education.
But the Australian doctors argue that if the law and ethics around palliative care and euthanasia were taught in classrooms, it would make such issues less “traumatic” and help people to make better informed decisions.
Queensland GP Dr Richard Kidd says young people can find themselves having to make decisions about how relatives are treated in their dying days.
“I have seen people as young as 21 being thrust into the role of power of attorney,” he says.
Their lack of knowledge makes it a steep learning curve in “how to do things in a way that is in the best interests of their loved ones and complies with the law”, he says.
He says the taboo around death means that families usually avoid discussing until it is too late. Most people do not know how their relatives want to be treated if the worst happens.
“So we need to start preparing young people and getting them to have tough conversations with their loved ones,” he says.
“Death lessons” could include the legal aspects of what mental and physical capacity means, how to draw up a will and an advanced care plan, and the biological processes of dying and death.
These topics could be incorporated into existing subjects, such as biology, medicine, ethics and law.
Dr Kidd says education around death would help countries like Australia, the US and the UK follow the example of Mexico, where death is an important part of the culture and even celebrated in the Day of the Dead festival.
He gives the example of Ireland, where he says wakes held after a death can be “joyous occasions”.
Introducing a culture of openly discussing death could even change where we die, according to Dr Kidd.
The vast majority of Australians die in hospital, even though many people say they would rather die at home with their family around them.
“Only 15% of people die at home but in the case of many more people, they could have died at home rather than hospital if there had only been a bit of preparation,” says Dr Kidd.
Matter of life and death
A hundred years ago it was very normal for people to die at home. but modern medical technology allows life to be prolonged in hospital, even though the patient might not have great quality of life.
“People may decide that at a certain point they want to be able to die at home in comfort rather than being kept in hospital,” he says.
The proposal for lessons in death has now been put to the Queensland education authorities and Dr Kidd hopes the message reaches other parts of the world.
“Our main aim is to get young people to start having those conversations with their parents and grandparents to learn more about how they want to die so that they know the answer when they need that information in the future,” he says.
“It should be seen as a positive and proactive thing – information and knowledge can be really empowering to people.”
So perhaps this is something to bring up over your next family Sunday lunch.
It might not be an easy conversation but it could be a matter of life and death.