Will you know when it is your time to die? It is a question that has permeated my mind since July 14, 2017. This was the day my mother died. It was a sad day, but it pales in comparison to the months preceding it. A breast cancer that had returned aggressively, a hasty port placement to receive chemotherapy that was too late and an ICU admission that began many futile interventions that never saved her life, but prolonged my mother’s suffering.
As a registered nurse, I watched a scene unfold that I swore to myself I would never let happen to anyone I loved. Yet, there I was listening to an oncologist discuss a 30 percent chance she would respond to chemo (which did not mean she would be cured) and choosing this inappropriate treatment for my critically-ill mother. I was party to these decisions when my mother couldn’t make them and when she made some recovery in her mental status, she also chose to continue treatments.
Were these decisions well founded? They were missing a key piece of information, that even with my training, I failed to see. My mother was dying. She was dying and none of my mother’s care providers were able to say those words.
Would my family have chosen a different path for my mother, if there had been a more explicit conversation? Resoundingly, yes. If my mother’s health-care providers would have had a deliberate discussion about her impending death my family would never have chosen chemotherapy and instead chose to initiate hospice care.
As a nurse, I have a duty to advocate for patients. Advocating can take many forms, but most often, it is helping patients navigate the complexities of the health-care system as well as explaining the meaning of test results, procedures, and diagnoses. Often, answering the question “What does this mean for me?” In my own practice, I have helped many patients understand the life changes needed to manage, diabetes, heart failure, and coronary artery disease.
But, like the nurses who provided care for my mother, I struggle having explicit conversations about dying with my patients. This does not appear to be an isolated phenomenon. In a 2018 study, researchers in Australia surveyed acute care and critical care nurses to assess their understanding and utilization of end-of-life discussions and care planning. They found that nurses’ own knowledge and rates of participation are low when it comes to end-of-life care.
On the other side of this, is a patient who may not be making a well-informed decision, because they don’t understand their disease is life-limiting or that they are dying. When the focus is shifted from “fighting to live” to “death is imminent,” other care decisions can be made by these patients. They can choose hospice care. Patients who have a prognosis of 6 months or less are eligible.
In hospice, care is shifted from procedures, tests and medications that can cause discomfort or pain for the patient, to comfort measures that improve the quality of one’s last days. Medicare, who pays for this benefit, found that only 12-25 percent of beneficiaries’ days during the last year of life are being spent in hospice. Are we having these conversations with our patients too late? I have coordinated and provided care for patients who only hours before their death have been enrolled in hospice, even though their diagnosis had been terminal and had been known by the patient’s providers for months.
To be sure, there are nurses who are adept at having these difficult discussions about death with patients and their families. But it is not a skill that comes easy to the majority of the profession. Fortunately, there are resources available to help nurses facilitate these conversations in an effective way.
Perhaps, we need to re-evaluate how we train our nurses to have conversations about death and dying. Have those who are experts at these discussions share their wisdom and teach nurses how to have these conversations in an empathetic and impactful way so that patients can receive the comfort and dignity of hospice care in a timely manner. If we can make these changes in our communication with patients and their families, perhaps, one day we will all know when it is our time to die.
On the second day of her geriatrics rotation, Jayme Mendelsohn buckles herself into the back seat of her professor’s blue minivan and rides south from the Boston University School of Medicine toward the house of a patient who cannot be cured.
As they drive through Roxbury, Dorchester and Mattapan, the professor, Dr. Megan Young, briefs Mendelsohn and another medical student about the elderly woman: She is 98, and diabetic, with increasing dementia.
She struggles to walk even a few steps, and can no longer make her way down the long cement stairway to her driveway. She has been housebound for nearly two years, and has a beloved dog who climbs up on her bed.
Young could have ordered tests, requiring hospital visits, to figure out why the patient had trouble walking. But that wasn’t what the woman wanted. “Really, what she wants to do is stay home and work on her word puzzles and not go to doctors’ appointments,” Young tells the students.
In her first three years of medical school, Mendelsohn studied blood and bones, cancer and heart failure and diabetes, learning to fix the many ways a human body can falter and break. But now she and the other fourth-year student, Nirupama Vellanki, are learning how to be doctors in a new age in health care, as clinicians increasingly grapple with how medicine can help patients with incurable illnesses.
Last year, all four medical schools in Massachusetts agreed to work together to improve the way they teach students to care for seriously ill patients, especially near the end of life. This fall, the schools are gathering data on what students are currently learning about end-of-life care, and some are beginning to change the way they teach.
Students at UMass Medical School are learning to treat gravely ill patients in the school’s simulation lab, examining “patients” — paid actors — and talking to them and their “relatives” about their worsening illnesses.
At Harvard Medical School, professors also hope to add lessons about end-of-life wishes to the school’s simulated teaching sessions.
At BU, students are visiting patients with a hospice nurse for the first time this year. Fourth-year students like Mendelsohn and Vellanki will be questioned on the principles of palliative care — a medical specialty that seeks to improve seriously ill patients’ quality of life — that they’ve learned on rotations like Young’s, part of the effort to measure what they’re learning.
“We are taught to solve problems, fix them and move on,” Mendelsohn says. “But that is not the answer all the time.”
In the United States, the richest country in the world, many of us live poorly at the end of our lives. We don’t talk enough with our doctors about what we want — what’s important to us — if we become seriously ill and cannot be cured. For instance, although most of us say we want to die at home, only about one-fourth of us do. And doctors have traditionally been given little training in how to talk with ill patients about dying.
“There’s a lot to be proud of in modern medicine,” says Dr. Jennifer Reidy, chief of the palliative care division at UMass Memorial Medical Center and an associate professor at UMass Medical School. “But there is a bit of a steamroller effect sometimes in health care. There is a momentum towards doing more because we can, and we know how to do it.”
The new end-of-life training for medical students grew from the Massachusetts Coalition for Serious Illness Care, a group created in 2016. Surgeon and writer Atul Gawande, one of the coalition’s co-founders, asked Harris Berman, dean of the Tufts University School of Medicine, if he would bring together the state’s medical schools to improve training in palliative care.
The other deans agreed. All of the schools had some teaching on palliative care, but believed they could do better.
“If we’re not teaching it, if we’re not testing it, the message is that it’s not part of their job,” says Kristen Schaefer, an assistant professor of medicine at Harvard Medical School. Instead, the professors at the four medical schools want to teach students early on how to help gravely ill patients, she said, so they understand: “This is part of what it means to be a doctor.”
The schools won’t adopt the same curricula — the medical schools vary in size, budget and curriculum — but they will train students in five basic elements of palliative care. Patients do not have to be dying to receive palliative care, which can start anytime after diagnosis, including during treatment.
Learning how to talk to seriously ill patients and their families lies at the heart of the curriculum changes. Students will be taught how to discuss not only the science of their patients’ illnesses but also their patients’ wishes and values, and help them create plans for treatment.
“These are extremely challenging conversations,” says UMass Medical’s Reidy. “They’re very emotional. There is a framework, a cognitive map, but ultimately it’s [like] jazz. It’s whatever’s in the moment.”
Students will be taught to anticipate strong emotions and how to talk to patients who are deeply sad or angry.
“Students are afraid that they’re going to say something wrong that could hurt patients and families,” says Schaefer, also a palliative care doctor at Dana-Farber Cancer Institute. “They feel worried that they’re going to cry themselves, that they’re not going to know what to do.”
The medical schools also hope to head off burnout, a serious problem for doctors, by teaching students to pay attention to their own emotions, and relaying coping strategies for working with dying patients.
‘Create A Good Death’
Young’s patient, Ellen “Nellie” White, lives in Hyde Park with her daughter, Christine. Young, a home care physician at Boston Medical Center, began treating her a year ago.
“So Mom, this is the doctor I told you about coming today,” Christine says, opening the door to her mother’s bedroom, just off the kitchen. Young and the two students trail behind her.
Ellen White, born nearly 99 years ago in Ireland, sits on an easy chair with a green crocheted blanket across her legs. Her gray hair is cut short. Her daughter moves a book of word puzzles from her mother’s lap onto a table.
White squints up at her visitors. “Let me put on my glasses so I can see you,” she says.
“My name is Jayme,” Mendelsohn says loudly, so White can hear her. “I want to know how you’re feeling today.”
“I’m feeling fine, thank God,” White says. “I have no complaints.”
“Is anything bothering you?”
Mendelsohn asks her a few more questions. She turns to her professor.
“Dr. Young, is there anything else you want us to specifically chat about today?” she asks.
Young asks her to check White’s blood pressure and listen to her heart and lungs.
White’s blood pressure is excellent. Mendelsohn takes off her watch.
“Let me just check your pulse,” she says.
She lays a finger across White’s wrist and gazes at her watch.
“Am I alive?” White asks.
Mendelsohn, counting, doesn’t answer. A few seconds later, she tells Young the pulse is a little more than 100 beats per minute.
“You’re alive!” Young tells White.
“That’s good to know,” she says.
Vellanki gives White a flu shot. The doctor and students leave the house. Afterward, the medical students say these visits help them learn different purposes of medicine.
“It can be really important for a medical student to have that moment where your job right now is not to write 15 different notes and to do all these different things and to solve their hypertension,” Mendelsohn says. “Your job is to talk to the patient and see what they need. … There are lots of times in medicine where you can’t solve the problem because the problem is bigger than medicine.”
Vellanki says she’s learning that doctors can still help patients at the end of their lives.
“I think you can’t solve the problem of dying but you can create a good death,” she says. “And that’s something that I don’t remember being taught much in med school.”
The trucker was making a delivery to a factory. While working out of the back of his rig, he ended up on the wrong side of a machine loader. The loader’s arm hit him, lifted him up, pushed him against a metal barrier, and crushed his chest. When the ambulance arrived at the emergency room, the trucker was in pain, slipping in and out of consciousness. The CT scan showed cardiac tamponade — bleeding in the sac around the heart — and he was rushed to surgery. The surgeon made a note that his patient was grimacing in agony in the elevator on the way to the operating room. The loader arm’s blow had essentially sheared the inferior vena cava — the biggest vein in the body — off his heart. The surgeons were successful in sewing it back together, but the trucker had lost so much blood that his major organs were beginning to shut down. He hung on for a week, in a drug-induced coma, on a ventilator in the intensive care unit. When his family came to visit, hospital staff would adjust the trucker’s medications down to allow him to tap out some tunes on a board, or squeeze their hands in response to questions. They were grateful that he was responsive, that he recognized them. They held out hope for his recovery. But the trucker had multiple broken ribs and a crushed sternum, and his organs were dying inside him. Nobody wanted to tell his wife and sons how much pain he was in. Nobody wanted to tell them he was dying.
I didn’t do the autopsy. I was brought in much later, to review the case and answer one simple question: Did this man suffer? In lawsuits that arise from industrial accidents, large financial penalties apply to those found responsible for preventable deaths that involve conscious pain and suffering. A forensic pathology expert witness can make postmortem diagnosis of terrible events — such as, in the trucker’s case, bone-crushing injury, battered internal organs, and ruptured vital structures — by reviewing the medical records and the autopsy findings. We can also examine the brain for signs of damage that would indicate that the decedent must have been rendered unconscious — and therefore, perhaps, did not suffer the effects of those agonizing injuries as a fully-conscious person would.
When I was a young doctor right out of autopsy training and would call the next of kin of the recently deceased, the question I feared facing the most was, “Did he suffer?” Everyone wants assurance that their loved one’s death was quick and painless. How should I answer that question when that death was, like the trucker’s, slow and awful?
I used to lie about it. There were times that I would tell the next of kin that their loved one’s death was instantaneous and pain-free, even when I knew from the autopsy that the death had been a bad one. I thought I was doing the right thing, the merciful thing — sparing those poor people the psychic agony of knowing that their loved one suffered in death.
But then I was called for the first time to testify in court on the conscious pain and suffering of one of my cases. I was placed under oath and sworn to tell the truth. I looked out from behind the stand at the decedent’s family sitting in the gallery, and panicked. Had I lied to those people, assured them that the body I had autopsied showed all the signs of having died, peacefully, in the blink of an eye? And if I had done that, how would they react now, when I would testify to the truth, and they would hear, for the first time, about the agony their loved one suffered?
We doctors start our careers with an oath to “first, do not harm.” Then, in court, we take an oath “to tell the truth, the whole truth, and nothing but the truth.” What if these oaths conflict? What if doctors, in an attempt to comfort a grieving family, actually give them false information that can later cost them the financial benefits that they deserve from a legal decision over their loved ones’ conscious pain and suffering?
Tell the truth. It’s a hard choice, but the only one that a doctor — any doctor — can make. If you are a clinician treating patients, their loved ones deserve to know the true nature of their pain, and also everything you are doing to make it better. Talk to the families about patient pain. Document your findings about patient pain. You aren’t helping anyone by hiding it. You might even be doing harm.
The vast majority of physicians enter medicine because they want to help people, so it’s not necessarily surprising that many are uncomfortable discussing death with their patients. However, when that discomfort reaches so far as to prevent conversations that patients need and want to have, it’s a problem, experts say.
A physician’s discomfort with talking about death can go as far as avoiding the word itself, says Helen Stanton Chapple, PhD, RN, an associate professor at the Creighton University Center for Health Policy and Ethics and College of Nursing in Omaha, Nebraska. Although she’s been out of clinical practice for about a decade, Dr Chapple recalls the euphemisms many providers used to avoid the subject.
Dr Chapple explained that the closest she’s heard physicians come to acknowledging that a patient is dying is saying that, “the illness is not survivable,” she told Medical Bag. “Part of it is that they don’t get any training, part of it is that they don’t see it modeled when coming up in residency training, and part of it is that they dislike trying to tell the future. That’s a problem.”
Fortunately, things are beginning to change in terms of the training and education physicians receive. The Palliative Care and Hospice Education and Training Act (PCHETA, H.R. 1676), introduced to Congress by Representative Eliot Engel in 2017, for example, proposes amending the Public Health Service Act to beef up support for palliative care, including training for healthcare professionals.
“It’s still widely variable at different medical schools and institutions, but I think it’s becoming much more accepted that this is part of the basic skills a physician needs,” said J. Randall Curtis, MD, MPH, a professor of medicine and director of the Cambia Palliative Care Center of Excellence at University of Washington School of Medicine in Seattle.
“More and more medical students and physician are being trained in giving bad news and how to have these conversations,” Dr Curtis told Medical Bag. “But it doesn’t make these conversations easy. You’re working with a patient, and you have to give them bad news. It’s hard even if you’re trained and good at it.”
And change is slow, says Lori Bishop, RN, MHA, vice president of palliative and advanced care at the National Hospice & Palliative Care Organization in Alexandria, Virginia.
“I think there’s a concern or perception that some of these conversations could reduce hope or take away hope,” Ms Bishop told Medical Bag. Research suggests the opposite, she adds. “People with serious illness are really expecting to have these conversations and want to have them, but they’re waiting for the doctor to initiate that conversation, so sometimes it doesn’t happen.”
Interestingly, clinicians perceive difficulties with patient and family responses as bigger barriers to these discussions than their own skills and limitations, but patient research does not quite jibe with those findings.1
A small, qualitative study published in 2015 found that “many participants were very comfortable talking about their own death.”2 The authors concluded, “Being able to talk about end-of-life wishes and know how to support people who are dying or bereaved are important to many people, and they would welcome interventions to facilitate this at a societal level.”
It’s not just patients waiting for the physician to take the first step. Providers across the medical profession tend to believe that physicians should lead the discussion, both because of their medical training and because of their ability to answer clarifying questions about the patient’s prognosis, suggests a 2016 qualitative study in the American Journal of Hospice and Palliative Care.3
Broaching the topic as early as reasonably possible also gives patients more time, information, and opportunity to make the decisions they want based on their values and their place in life, Ms Bishop added.
“I may choose a different path once I start a conversation if I know what my risks are and where I’m at in the trajectory in a disease,” Ms Bishop said. “You miss an opportunity for some pretty rich discussions when you don’t have these conversations. It’s not just a medical conversation. It’s really in context of that whole individual and where they’re at in their life and what matters to them.”
Why Doctors Delay
The reasons for physicians’ discomfort with conversations about dying are as much cultural, social, and systemic as they are personal, Dr Chapple told Medical Bag. The health care system is set up in such a way that necessary changes in a care plan do not always keep pace with changes in a patient’s condition, particularly if those changes occur overnight or on weekends when the primary medical team is off. It’s attending physicians who make the decisions, not the nurses or residents who may see the patient — and their deterioration — more frequently.
“Part of it is nurses having to witness and inflict the suffering and getting sick of it when they think there’s no good outcome,” Dr Chapple said. “They become like a Greek chorus, commenting to each other and to individual residents, but the attending physicians make the decisions and have their own reasons.”
A Dutch research project4 found the biggest reasons for delaying conversations about a patient’s death were “timing (when is the right moment?), reserve (because of the potential emotional despair of the patient), and hope (who am I to rob a patient of their hope?).”4
Nurses may develop a better sense than doctors for some of these answers because they are the ones implementing interventions, Dr Chapple added.
“They’re hanging the IVs, putting the machines on, monitoring the patient and doing all this stuff, so I think they have a sense of when there’s no resilience left,” Chapple told Medical Bag. “So the nurses are looking at the big picture, and the physicians are trying to tweak each complication.”
That tweaking mindset often begins from the first conversation, when a physician tells the patient about a terminal diagnosis but hardly before launching into the treatments they can offer.
“There’s a way of telling that doesn’t let you deal with the existential reality of it and instead moves you immediately into the steps you’re going to take,” Dr Chapple said. She noted that some research has shown that patients are surprised when they learn their treatments were never intended to be curative, even if they were told.
Physicians’ discomfort with discussing death may also arise from differences in patients’ ethnicity or faith. A 2015 study published in PLOS One surveyed more than 1000 physicians and found that 86% rated it “a great deal” or “quite a bit” challenging to discuss death with patients of a different ethnicity.5 In a 2016 study published in the American Journal of Hospice and Palliative Care, providers (albeit mostly nurses) rated conducting a spiritual history with patients as particularly difficult.6
A 2016 systematic review of the research lends credence to all of these reasons: “Recurrent themes within the literature related to a lack of education and training, difficulty in prognostication, cultural differences, and perceived reluctance of the patient or family,” the authors wrote.7
The problem, however, is more complex and far reaching than even those reasons, going deep into the heart of who we are as Americans, the way our healthcare system is set up, and how a big part of the economy’s growth relies on technology, Dr Chapple told Medical Bag.
“In the United States, it’s all tied up together with the idea that if we’re not living and growing and using technology to gain our salvation, there’s something wrong with us, that we have to fight, fight, fight, against death,” Dr Chapple said. “There is something about our culture and what we find acceptable and desirable that’s given us the terrible healthcare we have, that spends most of its money rescuing people from death and stabilizing them and spending so much less money on prevention and universal access to healthcare.”
While that perspective is expansive, reaching toward larger philosophical ideas regarding how our culture thinks about death, it also contains a key to learning to grapple with those conversations, Dr Chapple suggested.
How to Become Better at Talking About Death
“What palliative care people tell me is that the conversation is not difficult,” Dr Chapple said. “Part of what would be helpful is for a physician to think through for themselves what their own thoughts are about dying. What are your own fears, what is the unresolved grief you have about people you’ve lost in your life? Maybe that’s part of the internal work physicians have to do for themselves.”
Physicians who find that difficult may look for triggers they can rely on, such as initiating end-of-life care conversations when a patient reaches a certain age, or when a specific development occurs in a person’s progression of a chronic disease.
An extensive 2001 qualitative study identified 6 areas particularly important for physicians to consider in talking with dying patients8: “talking with patients in an honest and straightforward way, being willing to talk about dying, giving bad news in a sensitive way, listening to patients, encouraging questions from patients, and being sensitive to when patients are ready to talk about death,” the researchers wrote.
As with any skill, the secret to improving isn’t really a secret: practice, practice, practice.
“Practicing the conversation is the only way to get better at it and hone that skill,” Ms Bishop noted. “Some physicians have had access to training where they can role play with a mentor or with someone who has that skill set and get feedback on what they may want to do differently.”
Ms Bishop suggests starting these conversations by asking patients what’s important to them at this point in their life and how they feel things are going — and then listening.
“You get a lot of insight into what a person already knows about what their issues are or you may be surprised and find out what matters to them is not at all what you think it is as a clinician,” she added. “It just makes for holistic care when you have the conversations.”
But again, becoming more skilled with these conversations certainly doesn’t make them more pleasant.
“The goal of training is not to make it easy and fun,” Dr Curtis told Medical Bag. “Physicians by and large go into medicine to help people and make people feel better. To be in this position where you have to give bad news is difficult, but it is important, and being trained allows you to do it well and work with that discomfort.”
It’s also an ongoing conversation because people at different stages of life will change their opinions about what they want as circumstances or the disease itself change, she adds.
“We’re all going to die. For anyone who’s in the medical profession, there’s a certain subset of their patients who will die,” Ms Bishop said. “You can ease that burden if you start to have those conversations when someone is well and continue those conversations as the disease progresses.”
For physicians who are interested in brushing up on their communication skills in the face of bad news, there are a number of available resources, including VITALtalk and the Association for Death Education and Counseling. A list of organizations who provide assistance and information on multiple topics related to trauma, grief, dying, and death can be found here.
FRONTLINE follows renowned New Yorker writer and Boston surgeon Atul Gawande as he explores the relationships doctors have with patients who are nearing the end of life. The film investigates the practice of caring for the dying, and shows how doctors are often remarkably untrained, ill-suited and uncomfortable talking about chronic illness and death with their patients.
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.
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.