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.
Hearing the call
Deanna Cochran
Registered nurse, end-of-life doula, mentor and educator, and founder of Quality of Life Care, LLC
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?
A
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?
A
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?
A
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?
A
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?
A
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?
A
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?
A
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?
A
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?
A
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?
A
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?
A
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?
A
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?
A
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
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.
Day of the Dead: Doctors in Australia want to end the taboo around talking about death
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.
Dying days
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.
There are calls for talking about death to become part of the public culture
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.
Steven Eastwood [L] was invited by Alan to film him as he diedBy Helen Bushby
The old man lies in the hospital bed, drawing his last, rattling breath as he fades away from life.
The film camera, positioned just next to him, keeps rolling. We see the nurses move him to another room before they gently clean his body.
“Nobody wants to die but it’s a natural thing, we are biologically determined to die,” says documentary maker Steven Eastwood.
His film, Island, lays bare the dying process by filming four people with terminal illnesses.
Roy’s end of life care was tenderly shown
“Death is seen as a shameful thing – we think we’re a progressive society, but we repress and deny death,” Steven says.
“We’re no better than the Victorians.”
He was a quiet onlooker during the last year of his subjects’ lives, filming them in their homes before they became part of the daily rhythms of life in a hospice.
“To say you don’t want it to happen, you’re putting off facing something,” he says.
Mary talked a lot about her medical treatment during the film
“We need better death awareness to be more familiar with our mortality. I don’t think that’s ghoulish.”
The London-based film-maker’s proposal was accepted, and he managed to get access to film in a hospice on the Isle of Wight.
He speaks fondly of his time there, saying: “These are four people I really cared about – Alan, Roy, Mary and Jamie; three were in their 80s and one was in his 40s.”
Steven regularly made the five-hour journey to the hospice, including the boat trip to the island, which features in the slow, often hypnotic imagery of the documentary and its trailer.
He made the film after having “two quite significant bereavements – my mother-in-law and my best friend, who was the same age as me.
“So I realised I didn’t know very much about what palliative care is.”
Steven thinks we need to face the reality of death, make it part of our daily existence, so it’s less frightening.
The Isle of Wight’s scenery makes up many of the film’s quiet moments
“I think we all have an existential fear – ‘if I see someone I love who’s died, it’ll be too traumatic, it’ll replace all the images I have of them, I’ll never be able to unsee it, somehow it’ll hurt me’.
“But for me it isn’t the case, being with someone after dying, with that intimacy. I found it quite empowering and peaceful.”
He has huge admiration for the people who work in hospices, and hopes his film can “celebrate and show what palliative care is”.
“The most radical, extraordinary people in our society are the least visible,” he says.
“They’re the carers. And the care we receive at the end of our lives is extraordinary.
Steven Eastwood admires nurses working in palliative care, such as the one pictured with Alan
“These hospices which people have anxiety about going into – they’re not morbid, sterile spaces, they’re places of life.”
He says that after one of the screenings of Island, a stranger approached him, saying it had made him “less afraid of dying”.
Steven adds: “It’s not an ambition of mine, but if you can sit through the film and at the end feel uplifted, if you can make some kind of peace with something that will happen to all of us, then that’s a good thing.”
He speaks fondly about all his subjects, talking at length about Alan, whose death we see at the start of the film. Alan died of cancer.
‘He was living to smoke’
“Alan had chain-smoked since he was 16 and he smoked in the hospice with a nurse lighting his cigarette. But he wasn’t dying of a smoking-related cancer.
“This is part of what palliative care is – helping someone smoke until they die.
“The doctors felt that if he hadn’t been smoking he would have died several weeks earlier – he was living to smoke.”
Alan invited him to film his last moments.
The film shows many poignant moments
“The second time I met Alan, we had a connection, he said, ‘I think you’d like to stay with me all the way through and I think that would be great’.
“He wanted to do something radical with his death, he felt quite radical about his life.
“He believed our tissue is just a vehicle and we translate into something else.
“As far as he was concerned, there was no self-consciousness around his image, he thought participating was a way of marking something of his philosophy. He became my movie star, he was like my Burt Lancaster.”
Steven recalls watching Alan die.
‘Bliss in his eyes as he died’
“His death was a long, running out of breaths. It was very peaceful and very beautiful and I felt really moved by it. I didn’t feel sad. He was really ready to die.”
Alan told Steven he had seen a man die when he was just 19, during active service in the forces in North Africa. His commanding officer was shot, and died in his arms.
“He held this man and said, ‘I saw bliss in his eyes as he died, and I knew that what we are experiencing now is not it, there’s more’.
“So for him, his death was the thing he’d been waiting for. We can’t all ask for that.”
Steven acknowledges that of course deaths can be sudden or premature, such as Jamie’s.
Jamie was in his 40s when he died
“Jamie had stage 4 stomach cancer and had a young family, his attachment to his daughter was so incredible.
“He wanted to die in the best way he could with his daughter, so he involved her in everything, talked about his treatment, about what it was going to be like when he’s not there.
“He’s the person who I get upset thinking about.”
The film has been used to help medics in handling end of life care, and Steven and his producer are partnered with Sussex NHS trust.
“We’ve run two sessions with trainee doctors, to use the film as a means to talk about how we speak around death and dying, and how we talk to patients.”
He’s also keen to attract a young audience as he says people in their 20s are the “biggest death deniers”.
Steven talks about the pressure to be “productive, youthful, to look good”.
Other cultures, such as Mexico’s, take a more colourful approach to death with Day of the Dead
“This idea that we’re terminal and have an end is too much. I’ve spoken to young people who think about their late life and say, ‘oh I just want to take a pill to end it, when I’m no longer viable I switch myself off’.
“I do think it’s challenging to confront your own mortality.”
Steven, who also volunteers at his local hospice, thinks other cultures handle death better than we do, saying in Ireland “you see a more sustained grieving process and more familiarity being around the body”.
He also talks about Latin America and Asia, where they have “a completely different attitude towards the dying process”.
Mexico’s Day of the Dead celebrates and remembers family ancestors
“I think we need better education – we are finite, our bodies do decay, and I’ve made my peace with that.
“I hope the film can return us to some extent to our biological bodies, and say yes, everybody will die, most people will die in this way, in their 70s or 80s from either heart disease or cancer, and the care will be extraordinary.
“I don’t find that a burdensome thought. I felt poorly informed, and now I feel better informed by making the film – I hope that it will do that for people.
“We die and we don’t have to turn it into some kind of sanctum, it’s life. And I think Alan showed me that, so yeah, I was very, very fortunate to be invited to film him.”
David Price, of Westminster West, takes a walk through the backyard of his residence.
By Bob Audette
David Price is dying, but it’s not the colorectal cancer he was diagnosed with two years ago that is killing him. Doctors removed the tumor shortly after his diagnosis, but Price believes it’s only a matter of time before fate catches up with him.
Rather than let chance decree his date of death, Price, who is a psychologist with an MBA, decided to take the matter into his own hands. About a month ago, he stopped eating and next week, he stops drinking. He expects he will die a week or two thereafter. He faces his death with very little fear and a mental calmness that is peaceful and accepting.
“God has blessed me,” he said. “I have always had a deep faith. I know what’s on the other side.”
Price said he loves the life he has lived, but the current quality of his life was compromised following his cancer surgery. The surgery resulted in having what he calls “a dysfunctional rectum” and as a result, has to use a colostomy bag.
“I will never again have a normal bowel movement,” he said. “I will always wear Depends and I will always need to be close to a bathroom. If I can’t go to the bathroom properly, that’s just not a life.”
While Price said he is “supposedly cancer-free,” he has been told by his doctors he is at a high risk for a recurrence. “Plus, I have multiple health issues that could eventually kill me, including blood clots and hernias. I have epilepsy and I was falling as often as twice a day due to my medications. If I fall and crack my skull and go into a coma, where am I going to be lying for six years? Not at home. I don’t want to be in a nursing home.”
He understands that some people may judge his choice to end his life now, and many people have tried to change his mind. Price also acknowledged that while he believes he is making a rational decision based on his spiritual values and ethics, his choice is unique to him and no one else.
Act 39
In 2013, the Vermont Legislature passed Act 39, the End-of-Life Choice Law, which allowed Vermont physicians to prescribe medication to a Vermont resident with a terminal condition with the intent that the medication be self-administered for the purpose of hastening the patient’s death. Act 39 set forth conditions for the patient and doctors to be in compliance with the law, including that the patient be capable of making his or her own informed decision. But because he doesn’t have a terminal illness, Act 39 doesn’t pertain to Price.
“I don’t fit the criteria as much as my doctors might like, and they tried their best to convince me otherwise, but all of my medical providers have been supportive of my decision,” said Price, who doesn’t consider what he is doing as suicide. “It’s not extending my death.”
Betsy Walkerman, president of Patient Choices Vermont, which successfully advocated for the passage of Act. 39, said it would be a mistake to conflate Price’s decision with suicide.
“An end-of-life decision is really different from a situation where someone is distressed or has serious depression,” she said. “There are people in the last stages of life who don’t qualify for Act 39 who have stopped eating and drinking. It’s a person’s own choice how to live their life and how to spend their last days and weeks. This is a decision that any person can make and doesn’t require Act 39 and permission from anyone.”
Walkerman said Price’s decision is a demonstration of how people take control of how they die.
“There are so many ways to prolong life as the medical community defines it,” she said. “But whether a person wants that kind of life … it doesn’t sit there in a vacuum. It’s part of the continuum of the evolution of medical care and people’s interest in personal choice.”
Rev. Audrey Walker, of the First Congregational Church in West Brattleboro, said she counseled Price on his decision, and while she advised against it, she understood why he decided the way he did.
“He has reached what I consider to be a very rational decision based on his spiritual beliefs and I support his decision,” she said.
Rev. Shawn Bracebridge, the pastor at Dummerston Congregational Church, met with Price but only as a friend, he said, and he supports Price’s decision as well.
“His decision is his and his alone and it’s grounded in his spirituality,” said Bracebridge.
Medical ethicist weighs in
Arthur L. Caplan, head of medical ethics at the NYU School of Medicine, noted that doctors are required to have a patient assessed if they believe he or she is depressed or otherwise rendered incompetent by a mental health illness.
“If that’s not a concern,” said Caplan, “if Mr. Price is rational, he retains the right to refuse medical treatment. He doesn’t have to accept intervention. In fact, he has a fundamental right to deny an act of intervention.”
Caplan noted that people make this type of decision every day, and by example referred to a Jehovah’s Witness who might refuse a blood transfusion, even knowing it’s a simple life-saving procedure.
“Mr. Price’s doctors might have a good sense that their patient is well aware of what he is doing, that he is coherent and that he is able to comprehend his choices,” said Caplan. “It is the doctor’s duty to try to talk him out of, offer pain control or tailor your care, but that doesn’t mean the patient will be persuaded.”
Caplan also noted that some people with chronic illness who take their own lives are not as deliberate as Price appears to be, who has planned his death in advance after consulting with doctors, his therapist and members of the clergy.
Even when someone has a diagnosed mental illness that is affecting his or her decisions, said Caplan, it can be very difficult to stage an intervention.
“It’s very difficult to force feed someone,” he said. “They could pull the tube out. You would probably have to tie him down. It’s very hard to do with an unwilling person.”
A doctor might refer a patient for a psychological assessment, which could result in a court hearing to decide a person’s fate, but Caplan said courts are often reluctant to get involved in end-of-life decisions.
“Our society leans very hard on honoring individual autonomy,” he said.
Just the same, doctors who are trained to preserve life at all costs do not take it lightly to step aside and let a non-terminal patient die, said Caplan.
“It’s a challenge for them, because they are thinking they can manage epilepsy and they can manage blood clots,” he said. “But they are also trained to respect a patient’s choices.”
“The real issue,” said Caplan, “is not so much is he competent, but does he need spiritual support? Is his quality of life bad because he is depressed or doesn’t have companionship? Does he have friends and a social life?”
If anything that can still be expected from Price’s doctors, said Caplan, is that they stay in contact with their patient and keep checking with him in case he changes his mind and needs medical care.
“I couldn’t have been evaluated more in the past two years,” said Price. “If I was suicidal I wouldn’t be doing this right now.”
Price said his own decision has been informed by his years of practice — especially in the days when there was no treatment for HIV/AIDS — helping people confront their own mortality and helping them “untangle suicide from their sincere desire to end their lives. Most were facing horrible continued pain and suffering.”
‘We don’t know how to live in this world’
Price, originally of Dallas, moved to New England 16 years ago with his then-husband, Michael Lefebvre, to be closer to Lefebvre’s parents, who were ill. They lived in Gardner, Mass., until their divorce in 2008, when Price moved to what he calls his “mountain home” in Westminster West.
“I had all these wonderful plans for retirement,” he said. Instead, said Price, since his surgery he has been diving into his spirituality, studying up on Buddhism and Christianity.
“It’s helped me to realize this is all an illusion,” he said. “All of these material things we grab on to, that we think bring happiness, they don’t bring happiness; they bring us pleasure, momentary pleasure. But they also bring us pain and cost a lot of money. We don’t know how to live in this world. We copy others. I went through all that. I know the lifestyle and it did not lead to happiness.”
Though he has always been a spiritual man, he was not a regular attendee of church. His parents, who still live in Dallas, are Southern Baptists, a denomination with which Price has issues.
“There is a lot of negativity,” he said. “I don’t believe in hate. They don’t call it hate. They think they sit in judgment of the world.”
His parents also did not accept the fact that he is gay. “My family was disappointed in my whole life, not becoming a Baptist and becoming a psychiatrist. To them, mental illness is a sin that can be prayed away.”
The United Church of Christ accepts him as he is, said Price.
“They also accepted me as someone who sees ghosts,” he said. “I didn’t expect to be accepted, but they were like, ‘Yeah, Jesus saw and spoke to spirits.'”
Price firmly believes that all humans have psychic abilities, but not everyone chooses to accept that or practice those abilities and he also believes humans need to be physically close to the earth, touching it with bare flesh as often as possible.
“There is so much energy from nature that we are blocking with our concrete and steel,” he said, which is another reason he wants to die in his mountaintop home and not in a hospital or a nursing home. “I want to be here where I am absorbing the energy.”
‘A very spiritual man’
Price granted his therapist, Supriya Shanti, permission to speak with the Reformer. Shanti has been his therapist since the time Price was diagnosed with cancer.
She said his decision to end his life is not out of character, nor does she believe is it influenced by any mental health issues.
“He is a very spiritual man,” said Shanti. “His decision is a result of his connection to his spirituality, the spirit world and god and his trust and faith in that.”
Shanti noted that Price is a well-respected therapist in his own right and his decision has been informed by his years of offering counseling to his own patients.
“It’s his personal choice,” she said. “Given how he’s been fighting for two years and continues to suffer due to his medical issues, I think it’s his right to choose for himself and I support his choice.”
However, on both a professional and personal level, Shanti said she wrestled with Price’s decision.
“I definitely feel sad on a personal level,” she said. “Professionally, it creates some conflict, because I don’t know if we kept working together, maybe he would make a different decision. But the bottom line is, whoever shows up in my office, it’s my job to support and guide them. I help empower people to make their own decisions.”
Shanti also encouraged people to call and visit Price before he dies, rather than wish they had done so after he is dead.
“David wants company and wants honest conversation,” she said. “Now is the time to visit. It’s really important, especially in the last days of life on this physical plane, to be surrounded by people who love you.”
A necessary discussion
Walkerman said Act 39 and people like Price have ignited a discussion that has been a long time coming.
“He had a discussion with his family, his doctors, clergy,” she said. “A lot of people have trouble even starting these conversations. Any story helps illustrate for people how to have those discussions, rather than suffering alone, thinking they have no choice.”
“It’s important for people who are facing health and emotional crises to take a lesson from this in that you can reach out and get support for your spiritual and emotional needs,” said Susie Webster Toleno, the pastor at the Congregational Church of Westminster West. She said that while she didn’t counsel Price on his decision, they discussed the spiritual aspects of his illness and end of life. “There are people who will answer your phone call, who will listen and provide support,” she said.
Toleno said those people include local clergy members and organizations such as the Brattleboro Area Hospice, at 802-257-0775 (Brattleboro area) 802-460-1142 (Greater Falls area) or brattleborohospice.org.
“Brattleboro Area Hospice has a lot of support for people who are in tough health situations, even if they don’t qualify for hospice,” she said.
Price said if, when he first received his cancer diagnosis, he had the knowledge he has today, he might have chosen not to have surgery to remove the cancer from his body.
“It would have been quick and easy and now here I am, extending my death. But I suspected I wasn’t going to survive. Maybe my family needed time to accept that and maybe I had amends to make. I did a lot of forgiveness work, which is the most important thing.”
If there is one last notion he would like folks to consider challenging it’s the belief that all the world is knowable.
“What we think we know it probably not even one-thousandth of what it out there,” said Price, especially when it comes to spirituality. “Philosophers have been arguing about does God exist for forever. To think that you are smarter than Plato, to me that is intellectual arrogance. Even Einstein said ‘The more I study science, the more I believe in God.'”
My friend Jacqueline Zinn was diagnosed with glioblastoma, a brain cancer, in 2013; she died 18 months later, at age 56, leaving behind a husband and four kids. Jacquie was a triathlete who knew a thing or two about endurance, and she managed her treatment — surgery, radiation and chemotherapy — with the same skill and organization she had brought to her work as a project manager for a drug company. Once she realized that she had only weeks to live, Jacquie began planning for the next chapter: her death and its aftermath.
And so “every night for weeks she wrote letters to our children,” her husband Doug recalled. Jacquie wrote multiple letters to each child, to be opened at different life milestones. Jacquie wanted to be “present with her kids,” he said, at each of those important moments
for what I jokingly call “The End” is not for faint hearts. War hero John McCain is said to have been disciplined and firm as he planned his funeral over the past year, including the singing of the Irish ballad “Danny Boy.” But few of us have that strength. Recently divorced, I needed to rewrite my will and my medical power of attorney as well as a host of other financial and medical documents. At almost every turn, I found myself crashing head-on into the wall of denial. Just last week, my attorney begged me to acknowledge that I was at least receiving her emails, even if I couldn’t respond to them. “Yes,” I replied, tersely. All this resistance, and I’m not suffering from any terminal condition.
That’s why Jacquie Zinn’s letters to her children seem heroic to me. After all, she did have a terminal diagnosis when she sat down to write what ended up being more than a dozen letters to her children, ranging in age from 11 to 21, and she knew her time was short. I first heard about the letters at her memorial service in 2013. This past spring, working on a book about death and dying, I reached out to her second-born son, Jerry, who was writing about the loss of his mother, to ask if he’d be willing to share his letters from her. He’d already gotten two — one soon after her death and one when he graduated from college — and after some hesitation, he said okay. Now 24, Jerry will get the final letter when he marries.
“The letters my mother left me are among the most precious gifts I possess,” he told me. “She diligently took the time, the very limited time, as her life was coming to an end to sit down and think about her children’s futures.”
So one day, in perfect cursive penmanship and blue ink after her oncologist told her she had only weeks left, Jacquie wrote her first letter to Jerry, then age 19, to be opened after she died. Here is a portion of it:
“Dear Jerry, my budding film-maker,
“I know you have a lot of emotions running through you, as I did when my father died, but I was much older than you at the time, so I really can’t begin to truly comprehend what you are feeling. I am so incredibly sorry that I had to die while you are so young and I assume it sucks for you. Perhaps you can use some of these emotions and feelings in your upcoming work(s), assuming you continue to pursue film.
“Let me assure you that I did absolutely everything I could to stay alive for as long as possible. I know you realize that having been with me at many of my treatments or tests. Plus the acupuncture, tons of praying I also did. But for some reason I just didn’t make it as one of the chosen ones to be cured. But because of what I did I’m sure I lived much longer than if I hadn’t been in good shape to begin with.
“I am incredibly proud of you for everything you have done in your relatively short life. I will be watching over you every day to see what new and exciting things you will accomplish — regardless of what occupations(s) you pursue over your lifetime.
“Do your best to support Dad and your siblings, especially during this first year as it will be the hardest for everyone. I remember that from when my father died. Time will certainly help, but it takes a long time to focus on the happy memories while the sad thoughts are more immediate and closer at hand.
“I had many fantastic years on earth, more than a lot of people, hence, I have no complaints. I survived a melanoma, car accident in the mountains of West Virginia with Uncle Jerry, car accident in Durham. So I have already lived many lives and I was extremely grateful for each and every moment. Try and live your life that way and you will be a happy and fulfilled human being.
“I love more than you will ever know, my dearest Jerry.
“Love, Mom.”
On the day Jerry graduated from the University of North Carolina at Chapel Hill in 2016, Doug handed over letter No. 2, written with the same pen, on the same type of note paper.
“My sweet dear Jerry,
“Well — this is it — a big milestone in your life — college graduation! Congratulations. I am so incredibly proud of you no matter what your major or minors. I know you made it worthwhile and got just exactly what you wanted to out of the experience. I know you learned an incredible amount about subjects and probably an even greater amount about people.”
Jerry said that at various times during college he had considered dropping out, but “knowing that I would never receive that letter if I did not graduate was a very strong influence in keeping me in school. The letter was a motivation for which I will be forever grateful.” Knowing Jacquie as I did, I’m certain that was part of her master plan.
In the second letter, Jacquie signs off with these words: “I am watching over you all the time, or at least I hope I can do that! Congratulations, again. Enjoy this fabulous day and all the celebrations around. Big Hugs and Kisses! Much Love, Mom.”
What a gift, an eternal gift, I thought as I read and reread the two letters. More than anything, I silently bowed in amazement, understanding how Jacquie had faced her own version of “The End.” Doug reminded me that she’d written her letters while in a wheelchair, paralyzed on one side.
With Jacquie’s example in mind, I finally sat down and read the pile of documents my lawyer had sent to me, realizing that my denial served no purpose. To my surprise, I found comfort in taking care of that necessary business — once done. I’d like to think that was something Jacquie felt, too, as she sent her missives into the future.
