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.
By Matt Pickles Maths, science, history and death?
This could be a school timetable in a state in Australia, if a proposal by the Australian Medical Association Queensland is accepted.
They want young people to be made more familiar with talking about the end of life.
Doctors say that improvements in medicine and an ageing population mean that there are rising numbers of families facing difficult questions about their elderly relatives and how they will face their last days.
But too often young people in the West are not prepared for talking about such difficult decisions. There is a taboo around the subject and most deaths happen out of sight in hospitals.
Pupils might have reservations about lessons in death education.
But the Australian doctors argue that if the law and ethics around palliative care and euthanasia were taught in classrooms, it would make such issues less “traumatic” and help people to make better informed decisions.
Queensland GP Dr Richard Kidd says young people can find themselves having to make decisions about how relatives are treated in their dying days.
“I have seen people as young as 21 being thrust into the role of power of attorney,” he says.
Their lack of knowledge makes it a steep learning curve in “how to do things in a way that is in the best interests of their loved ones and complies with the law”, he says.
He says the taboo around death means that families usually avoid discussing until it is too late. Most people do not know how their relatives want to be treated if the worst happens.
“So we need to start preparing young people and getting them to have tough conversations with their loved ones,” he says.
“Death lessons” could include the legal aspects of what mental and physical capacity means, how to draw up a will and an advanced care plan, and the biological processes of dying and death.
These topics could be incorporated into existing subjects, such as biology, medicine, ethics and law.
Dr Kidd says education around death would help countries like Australia, the US and the UK follow the example of Mexico, where death is an important part of the culture and even celebrated in the Day of the Dead festival.
He gives the example of Ireland, where he says wakes held after a death can be “joyous occasions”.
Introducing a culture of openly discussing death could even change where we die, according to Dr Kidd.
The vast majority of Australians die in hospital, even though many people say they would rather die at home with their family around them.
“Only 15% of people die at home but in the case of many more people, they could have died at home rather than hospital if there had only been a bit of preparation,” says Dr Kidd.
Matter of life and death
A hundred years ago it was very normal for people to die at home. but modern medical technology allows life to be prolonged in hospital, even though the patient might not have great quality of life.
“People may decide that at a certain point they want to be able to die at home in comfort rather than being kept in hospital,” he says.
The proposal for lessons in death has now been put to the Queensland education authorities and Dr Kidd hopes the message reaches other parts of the world.
“Our main aim is to get young people to start having those conversations with their parents and grandparents to learn more about how they want to die so that they know the answer when they need that information in the future,” he says.
“It should be seen as a positive and proactive thing – information and knowledge can be really empowering to people.”
So perhaps this is something to bring up over your next family Sunday lunch.
It might not be an easy conversation but it could be a matter of life and death.
Dan Kuester and Kirsten Farnsworth had only been married for two months when Kirsten was diagnosed with cervical cancer. Between aggressive treatments over the course of the next five years, Kirsten and Dan built a life together: they finished graduate school programs, traveled, and adopted a rescue dog they named Sputnik.
But the cancer came back in the summer of 2017, and the couple knew it was time to accept facts: At 32, Kirsten was going to enter the last phase of her life.
They decided to hire an end-of-life doula — a death doula or death midwife — to help them through the process.
“I’ll admit neither of us was incredibly familiar with the idea of an end-of-life doula,” Kuester says. “We didn’t have any kids so we had no familiarity with doulas as far as midwives go.”
The term doula is often associated with birth, a Greek term that loosely translates to a woman helping another woman. Birth doulas are trained professionals who provide mothers with emotional, physical and informational support before, during and just after birth.
Death doulas do the same, just at the end of life instead of the beginning.
Across the country, programs are cropping up that teach people how to become end-of-life doulas, holistic caregivers who support those in the process of dying (and their loved ones) with a variety of services, from practical tasks like creating a plan for the final days of a client’s life, to the psychological work of internal and external forgiveness and acceptance. This is not hospice care, but something supplemental; while hospice care keeps patients comfortable with medication, provides relief through treatments and assesses ethical medical issues with the family, death doulas are more like traveling companions, there to walk with clients and families toward something wholly unknown.
An end-of-life doula can help with cleaning or cooking, run errands or just be physically present for a client to talk to about things loved ones just aren’t ready to hear — like the reality that the end is coming.
Boulder is home to one such end-of-life doula program. Tarron Estes founded the Conscious Dying Institute after a career working as a transformational learning consultant in health care systems showed her what it looks like to die in the United States.
“When I realized [health care systems] really weren’t talking about [death], I had a very strong vision: You will change the way people are cared for in senior communities,” Estes says. “It made sense to me that if I wanted to change how death is happening in America I would do what I do best, which is work with individuals and help them experience personal transformation that also gives them a career in end-of-life care and healing.”
Through the Conscious Dying Institute, students can complete several end-of-life education programs, including a two-phase, eight-day onsite Sacred Passage Doula Certificate Program.
Nicole Matarazzo was one such student. She went on to become a doula for Kirsten Farnsworth in her last months.
Matarazzo had spent most of her professional life working directly with death; after college as a child life specialist in pediatrics working with children who were born HIV positive, then with patients receiving bone marrow transplants.
She went on to teach kindergarten and become a massage therapist, then eventually, after having children, went to work in health care at elementary schools in Boulder, where she says her role was as much about providing emotional support to kids as it was about caring for illness and injury.
About four years ago, a friend of Matarazzo’s was diagnosed with cancer for the second time, and she asked Matarazzo to care for her in her remaining days.
For a year, Matarazzo walked through the last phase of her friend’s life with her. Without question, it was emotionally the hardest work Matarazzo had ever done.
“A few hours after we had called hospice to come and be with us, [a hospice worker] asked me, ‘Where did you get your training?’” Matarazzo says. “It prompted me to wonder: ‘Why did you ask me that? How are people dying in this town?’”
The answer from the hospice worker: “Often alone and scared.”
“I heard that as a message loud and clear,” Matarazzo says. “I knew at some point I would figure out how I was going to be a player in that arena, so that there are less people dying afraid and alone.”
Trends in American lifestyles have raised the risk of dying alone: the divorce rate for 55- to 64-year-olds doubled from 1990 to 2015, according to the National Center for Family & Marriage Research, and once divorced, people are remarrying less often. One study found that nearly 7 percent of U.S. adults 55 and older had no spouse or biological children, and that number is predicted to surge over the next 50 years.
Perhaps, then, it’s no coincidence the death doula movement is flourishing.
“I think it’s been slowly beginning, quietly, kind of a grassroots movement,” says Jeri Glatter, vice president of the nonprofit International End of Life Doula Association (INELDA) based in New York City.
“I think a big part of [the rise of the deal doula movement] is the people who said in the ’80s that they did not want to give birth a certain way — that they didn’t want to be put in a white hospital and have a white male say, ‘You’ll go to sleep, and you’ll wake up, and I’ll hand you a baby’ — I think those same people are turning 70 and 80 now, and there’s an awareness that they don’t want to die the same way; they don’t want to be disconnected from what’s happening.”
Glatter, like Matarazzo, came to her work after caring for a loved one at the end of their life. The experience, somewhat counter-intuitively, filled Glatter with a “sense of joy and enlightenment.” A friend said she should consider becoming a death doula.
“I Googled the term, as per my friend’s direction, and I found the Open Center in New York City,” Glatter says. “It was the only thing listed; one Google response to ‘death doula’ [at that time].”
At the Open Center’s Art of Dying Institute program, Glatter met Henry Fersko-Weiss, a clinical social worker who created the first end-of-life doula program in the U.S. at a hospice center in New York City in 2003. Fersko-Weiss had studied the work of birth doulas, not because he was interested in becoming one, but because he saw the parallels between supporting people at the beginning of life and supporting them at the end of life. After more than a decade of moving from hospital to hospital teaching his volunteer-based end-of-life doula program, Fersko-Weiss dedicated himself fully to the cause and opened INELDA in 2015.
“Our training and our model of care has always been based in this volunteer, being-of-service format,” Glatter says.
While INELDA teaches courses on business development for those who want to professionally practice end-of-life doula work, Glatter says these courses always focus first on providing ways to make care accessible to those who need it, through sliding scale fees, pro bono work and other forms of payment that may be available to people, like trading services.
“We focus first on what brought [a student] to this work and the meaning behind the work, [their] intentions with this work,” Glatter says. “The term ‘calling’ is probably the most common term we hear from people who take training and business development courses through INELDA. We try to keep that in the forefront of the conversation. After that there is the understanding that if you are approving a service and someone is in a position and wants that support through a higher practitioner, there’s nothing wrong with being paid for that.”
In early 2017, Fersko-Weiss told USA Today that trained and certified non-volunteer end-of-life doulas typically cost between $40 and $100 per hour, with flat rates often applied during a patient’s final days so that round-the-clock care can be provided. End-stage doula services, he said, range from $1,200 to $4,000.
Glatters says that she, Fersko-Weiss and INELDA president Janie Rakow have never charged for their work.
Some doula training organizations are focused solely on training volunteers, like the nonprofit Doula Program to Accompany and Comfort in New York, which has been operating since 2001. Each year the program accepts between 13 and 15 volunteers from an application pool of 300 or so. These volunteers go into hospitals and meet with patients at least once a week through their dying phase.
To executive director Amy Levine, end-of-life doula work is about “lending our humanity.”
“We can do this for each other as human beings,” she says. “Even just 15 minutes together every week. It changes both lives.”
Nicole Matarazzo says determining appropriate payment for her services is an ongoing learning process, and she works to provide as much pro bono work as she can.
“My biggest challenge as a death doula is the exchange of money because this work to me is so sacred,” she says. “Having the conversation around what I do makes me nervous because there’s integrity and accountability around what I do.”
Becoming a certified doula can be pricey as well. The End of Life Doula Certificate offered at the Conscious Dying Institute costs $2,995 and provides nurses with 66 Continuing Education for Nurses (CNE) credits. At INELDA, it costs $750 to attend a two-day training, $100 for a current membership in INELDA, $35 to request a certification packet, and a $75 application fee, bringing the total to $960.
Currently there is no regulatory body that standardizes practices around end-of-life doula work, but most programs offer similar courses structured around providing emotional and spiritual support, assisting with unfinished business, creating visualizations, deciding how the space will look and feel at the time of death, designing rituals, developing a vigil plan and any other nonmedical gaps in care. There’s no regulatory agency for birth doulas, and most end-of-life doulas feel such an agency might limit access.
“As soon as hospice became a Medicare benefit it got whittled down year after year until it became so hard for people to get what they need,” says Tarron Estes of Boulder’s Conscious Dying Institute. “What I hope is that my work goes more and more into health care systems so that people who are on the front line can have this kind of training, so that they are supported to be who they are and they can stand for wonderful, beautiful deaths. I want CNAs to have end-of-life certifications. I want systems like Kaiser to work with me to figure out how to do a training for their employees so … more of this work can get in the minds, bodies and hearts of people that are called to do this work.”
The interest in improving end-of-life care is even beginning to infiltrate medical schools, where students are required to attend a birth, but not a death. Atul Gawande, a surgeon in Massachusetts, is leading the charge to improve education about end-of-life care at Massachusetts’ four medical schools: Harvard University, Boston University, Tufts University and the University of Massachusetts Medical School.
One thing seems certain: the need is there.
When Kirsten Farnsworth passed on May 30 of this year, her husband Dan Kuester helped his mother-in-law wash Kirsten’s body with essential oils, an ancient ritual that Nicole Matarazzo, as their doula, suggested. Kuester said that of all the planning Matarazzo helped with — visualizations, planning for the vigil and emotional support — washing the body gave him the most peace, the closest thing he can describe as “closure” on an experience that never truly ends.
“Nicole, I think partly by virtue of the fact she could come in and not be responsible for Kirsten’s physical health, it made it easier to trust her in an advisory role,” Kuester says. “She also brought a mindful and compassionate and extremely calming presence. I think both Kirsten and I felt much calmer on days when we would have meetings with Nicole, being able to plainly state what it’s like, some of these things that were in front of us that we weren’t completely sure of how it was going to go. She did a great job of showing us how it was, how these experiences were going to go and what options we have to impact the ways the experience goes.”
Death, reminds Tarron Estes, is not a medical event.
“It’s just sad because we don’t know how to be with death anymore,” she says. “Thank God we’re all beginning to think about how to do this better because none of us, myself included, people who have had the benefit of transformational work and sustainable energy and sustainable lifestyles and all the bells and whistles that a Boulder person and people who are conscious have had all their life, even most of us don’t think about it and don’t know what else there is to do. Believe me though, we’re going to be wanting to know about it.”
Oregon’s 1994 Death with Dignity Act (ORS 127.8 ff) was the nation’s first law authorizing mentally capable, terminally ill adults with 6 months or less to live to request a doctor’s prescription for medication they could decide to take to peacefully end their suffering if it became unbearable.
It was enacted in 1994 and taken into effect in 19971.Since then, 6 more states—Washington, Montana, Vermont, California, Colorado, and Hawaii (Hawaii’s law does not take effect until Jan. 1, 2019) and the District of Columbia (DC)—have authorized medical aid in dying. Pies and Hanson, in a recent article in MD Magazine® (July 7, 2018), presented 12 myths (sic) about this medical practice.2
I practiced family medicine in a small rural Oregon town from 1977 to 2012. In 1999, a patient asked me if I would honor his request for a “death with dignity.” He was a long-time patient who was dying of cancer; he had had surgery, radiation, and chemotherapy, but his cancer was incurable and advanced. He was enrolled in hospice, but his symptoms became intolerable, leading to his request to me.
At that time, I had been in practice for more than 20 years. I did ultimately prescribe the aid-in-dying medication, and he died very peacefully at home with his wife and children at his bedside. They continue to thank me now, almost 20 years later.
Those of us who have participated in the practice of medical aid in dying have a different perspective than those who theorize about it. Pies and Hanson cite a 20-year-old article3 regarding the psychological and emotional effects upon US oncologists who participate in euthanasia and PAS. In fact, euthanasia—which unlike medical aid in dying requires someone other than the dying patient to administer the medication—is illegal in the United States. In my role as the National Medical Director for Compassion & Choices and our Doc2Doc consultation program, I speak to scores of physicians who have practiced medical aid in dying.
All of them are sincere, all are compassionate, none of them take this action lightly, and none have reported instances of regret or depression.
1)People who request medical aid in dying usually do so because they are experiencing loss of dignity, anhedonia, and inability to control the “end of their life story.”
Pies and Hanson are correct in reporting that pain is not usually in the top 3 reasons why individuals request medical aid in dying in both Oregon and California. Autonomy is no. 1: these individuals are suffering, dying persons who feel that they have no control over their imminent death (which their physicians confirm). They do not want to die in a hospital. They are knowledgeable of their options. They do not want to depend upon others for symptom management, and indeed, by their own report, their symptoms are unmanageable.
Pies and Hansen report that many patients who request medical aid in dying are clinically depressed, but this assertion is false. By law, they are required to be evaluated for the mental capacity to make rational decisions by their physician and a second (consulting) physician. In addition, they often are in hospice, so they also are evaluated by their hospice medical director, their hospice nurse, their chaplain, their social worker, etc. They do not have a major depressive disorder; rather, they are grieving normally. They cannot “be successfully treated, once properly diagnosed.”1 They are terminal.
2) In Oregon, 6 other states, and D.C. with similar laws, there are adequate safeguards to ensure proper application of medical aid in dying.
Oregon’s Death with Dignity Act, now in effect for 2 decades, is analyzed annually by the Oregon Health Authority1 and it has never needed to be changed. It adequately protects individuals from coercion, abuse, or inappropriate use. Why is this statement true? There are core safeguards in place to protect vulnerable populations, so many in fact that they are also recognized as significant barriers for dying people to access the law. Many dying patients in Oregon are unable to utilize the Death with Dignity Act because they die before the entire process can be completed and doctors can be reluctant to practice because of the paperwork.
3) The conversation about the option of medical aid in dying is palliative in and of itself
A healthy doctor-patient relationship is founded upon open communication and trust. In end-of-life care, the ability to discuss all options allows for exploration, and hopefully, fulfillment of the patient’s wishes and values. Many patients and doctors discuss medical aid in dying, even if the patient ultimately does not make a request for a prescription. Physicians who are willing to openly explore a patient’s requests can learn much that can help her or him to provide quality care at the end of life.
In all jurisdictions where this palliative, end-of-life care option is authorized, approximately two-thirds of patients who go through the process required by the Oregon Death with Dignity Act ultimately take aid-in-dying medication; one-third do not take the medication,1 but they want to know that they have the option to use the medication if needed, hence, they are palliated.
4) Not all suffering can be satisfactorily treated with palliative medicine or hospice care
Quality hospice care and palliative care have improved the end-of-life experience of thousands of patients, and advances in end-of-life care continue. More improvement and resources should be dedicated to this cause. But not all suffering can be assuaged. Suffering is defined by the patient, not the doctor.
5) Doctors who conscientiously oppose medical aid in dying are free not to practice it.
Pies and Hanson discuss conscientious objection to medical aid in dying “in theory” based upon “guidelines.” Physicians who are not willing to participate in end-of-life care option are free not to practice it if it conflicts with their conscience; there is no law that requires otherwise. However, a licensed physician is bound to practice professionally and under the standards of care in their location. A professional “puts the patient first.
If a licensed physician (who does not support a patient’s option to decide to use medical aid in dying) has a request by a patient for this end-of-life care option, her or his obligation is to refer the patient to another physician for evaluation of the request. Ironically, many physicians in Oregon who do support this option for their dying patients, are unable to provide it because they are employed by healthcare systems that prohibit their doctors from practicing it. Thus, rather than physicians being coerced to practice medical aid in dying, they are prevented from honoring their dying patient’s request for it.
6) Language matters: medical aid in dying should not be called “suicide,” or “assisted suicide”
Legally, in all jurisdictions where medical aid in dying is authorized, “it is not suicide, homicide, euthanasia, or mercy killing.”1
David Pollack MD, a psychiatrist at Oregon Health & Science University School of Medicine in Portland, OR, stated that a “growing body of evidence clearly distinguishes the characteristics of persons who commit suicide resulting from mental illness from those of terminally ill persons who request medical aid in dying.
“These differences include the type and severity of psychological symptoms, degree of despair, reasons for wishing to end one’s life, communicativeness regarding their wishes and fears, degree of personal isolation, openness about the wish and intended method to end one’s life, and the impact on the person’s family or support system following the person’s death.”4
Furthermore, there is no place in end-of-life care for language that is hurtful, angry, shaming, or that causes guilt. Language matters.
7) People requesting medical aid in dying are carefully screened to rule out depression that impairs judgment
Pies and Hanson are correct in reporting that most medical aid-in-dying statutes do not require a professional mental health examination, “except when the participating physician is concerned and decides to do so.” Such a requirement is unnecessary because doctors are experts in evaluating the mental capacity of their patients to make informed healthcare decisions.
Doctors make these assessments every day in routine matters and matters of life and death. And if 1 of the 2 doctors evaluating the mental capacity of a patient requesting medical aid in dying wants a third mental capacity evaluation by a mental health professional, they can easily request it. It’s important to note that all of these terminally ill patients and their families are sad, and normally grieving. But most patients do not have mental illness or a major depressive disorder. By virtue of their State Medical License, physicians who are involved in primary care are competent to diagnose mental illness, including depression that causes impaired decision-making.
8) In the United States, only people with terminal illness are eligible for medical aid in dying
In Oregon and in all jurisdictions where medical aid in dying is authorized, individuals who receive an aid-in-dying prescription must meet the eligibility criteria, including having a terminal illness. This diagnosis is determined by the attending physician and the consulting physician. In each case, these licensed doctors consider the individual situation.
A diabetic who does not want to take insulin is not a candidate; someone with anorexia nervosa, by definition, has a mental illness. Advanced dementia precludes participation because the patient is not mentally capable of making their own healthcare decisions. When a patient requests medical aid in dying, the physician investigates all of the intricacies of the request. If the patient has a disease that can be reasonably treated (diabetes, early cancer, etc.), this end-of-life care option is not appropriate.
Hence, the value of 2 physicians working in concert is not only the case, but also the law, in Oregon.
9) The basic requirements for medical aid in dying have not changed in more than 20 years
After more than 20 years of medical aid-in-dying experience in Oregon, there now is ample accumulated experience to show that the law has been safely and successfully implemented.5 In fact, ORS 127.8, the Death with Dignity Act, has not been changed, amended, or altered. Those who theorize that abuses are possible seem more concerned with “what if” than with “what is.” Experience and evidence outweighs speculation.
In point of fact, the practice of medical aid in dying in Oregon (and in others states with similar laws in effect) has catalyzed improvement in end-of-life care, a much broader discussion of end-of-life care issues, more frequent conversations between physicians and patients about their end-of-life care wishes and goals, doctor-patient relationships, and the awareness of and participation in hospice and palliative care services.
10) Since Oregon’s Death with Dignity Act took effect in 1997, more people have not died, but fewer have suffered
Since the Oregon Death with Dignity Act took effect in 1997, a total of 1967 Oregonians have had prescriptions written under the law, and 1275 patients have died from ingesting the medications.
During 2017, 143 patients used medical aid in dying, and the estimated rate of Death with Dignity Act deaths was 39.9 per 10,000 total deaths,1 which is a similar percentage to previous years. All of these patients were about to die (had a prognosis of 6 months or less to live) and had the comfort of knowing that they could determine the final chapter of their life if their suffering became unbearable.
Pies and Hanson concluded that “it is critical that physicians inform themselves as regards the actual nature and function … of medical aid-in-dying legislation.” I heartily agree. However, their “first step” is to “recognize and challenge the many myths that surround these…laws.”
I believe that a better first step is to learn the facts about medical aid in dying, not theoretic myths. Louis Pasteur, MD, wrote, “One does not ask of one who suffers: What is your country and what is your religion? One merely says: You suffer, that is enough for me.” A dying patient needs respect, and our comfort. We may have thought that we were trained as “healers,” but when a cure is no longer possible, care and comfort are paramount.
In 1998, Cindy Spence watched in horror as her hospitalized, cancer-stricken father-in-law was denied the massage he desperately requested. Then and there, the Texas woman’s career path became clear.
“He entered a pain-filled and despondent state in which the only thought that gave him any pleasure at all was to have a hospice therapist come to his hospital room,” Spence recalls. But in 1998, massage therapy was contraindicated for cancer patients. The thinking was that massage would spread cancer cells or might break a tumor.
“That just felt wrong to me,” Spence says.
Now Spence is one of hundreds of hospice massage therapists nationwide, working at the T. Boone Pickens Center at Faith Presbyterian Hospice in Dallas. MK Brennan, president of the Society for Oncology Massage, estimates that at least 250 U.S. hospitals provide hospice massage, and the number is growing.
“Ever since the 1940s and ’50s, we’ve been working to establish ourselves as health care providers rather than adult entertainers,” Brennan says.
This perception had changed little when massage therapist Irene Smith basically launched the hospice massage field in 1982. Nor had the other part of the equation — hospice care — caught on.
“You had two topics within the field that have been very scary to the general public,” Smith says. “Massage was not a mainstream modality of care for many, many years, and death has never been a dinner-table conversation until the past decade.”
It didn’t help that, at least literally, we were not a “touchy-feely” society.
“Touch has been very misunderstood,” Smith says. “Touch is in the forefront of neuroscience, with more information coming to the mainstream public in relation to the positive outcomes of being touched. More and more people are becoming aware of its benefits from birth to death.”
That’s why Smith founded the influential California-based Everflowing program, whose mission is “to teach mindful touching and the practice of therapeutic presence as opportunities to recognize and express tenderness in caregiving.”
The Public Presses the Issue of Hospice Massage
Integration of massage at medical facilities often requires public demand. As hospice massage therapists toiled as freelancers and volunteers, patients and their families saw the benefits of the practice and increasingly have come to insist on it.
“We have seen a definite acceptance and growth for requesting massage,” says Meg Robsahm, an independent hospice massage therapist in Rochester, Minn. “We have also seen an increase in hospice companies adding it to their service menus simply because of demand.”
“I started as a volunteer. The patients were beginning to ask for this, so all the big [facilities] realized they couldn’t provide coverage with just volunteers,” Herman says. “Insurance wouldn’t cover it, so we had to come up with donations, philanthropy or pulling it out of little corners of the budget.”
Still, Brennan says, staff positions for hospice massage therapists remain relatively limited, and there are few signs that insurers will start including it in their standard coverage. On the contrary, independent massage therapists are strongly advised to buy liability coverage to work in hospice care.
Touching in Many Ways
At least for now, advocates for hospice massage have research on their side.
According to the AMTA, a 2014 study focused on integrating massage therapy into palliative care found “statistically significant changes in pain, anxiety, relaxation and inner peace of patients, decreasing both pain intensity and anxiety while increasing the patients’ sense of relaxation and inner peace.” (Palliative, or comfort, care is appropriate for people of any age at any stage of a serious illness. Hospice care is generally for those who have six or fewer months to live and who are no longer receiving active treatment.)
The study’s results are why these therapists recognize that their role is, as Smith puts it, “to comfort — not cure — to validate, to honor, to soothe and to respect.”
Other therapists often point to the wide-ranging, even holistic nature of their work.
“The dying process involves physical, spiritual, mental and emotional pain,” Spence says. “RNs can work with the physical pain, chaplains with the spiritual pain and social workers with the mental and emotional pain. I feel that massage and music therapy are the only ones that treat all of those modalities.”
Getting the Family Involved
Smith and her peers strive to have family members present during hospice massage sessions, not just to observe but to participate — to learn how to be gentle with touch.
“Families sometimes have no way to connect with their loved ones, and massage can offer that connection,” Robsahm says. “It can bring a sense of peacefulness in the end stages.”
Families are generally relieved that their loved ones are finding relief and relaxation.
“Especially as someone is close to death — say 48 hours — if I’m in the midst of that family and they’re interested, I will have them sit next to me and have them do what I do,” Robsahm says. “At a certain point, my time will be up, and they will get to be the person to hold their hand, stroke their neck, put oil or lotion on their feet.”
The patient and the family are not alone in reaping something profound out of the experience, according to Spence.
“I have made a commitment to find every ounce of joy,” Spence says. “I knew when I came in that there would be a lot of sorrow, but I didn’t know I would laugh with patients and their families as much as I have.”
Or, as Robsahm puts it: “It moves beyond physical contact. We touch people’s bodies, and in the end, we touch them in their soul.”
Four years ago, a dear friend of the family, ‘Jane’, died of bowel cancer.
Jane had helped me around the house and looked after my first daughter, from the time she was a baby up until she went to school. We kept in touch over the years, and soon after my twins were born, she got the diagnosis.
The last time I saw her she was frail and could barely walk.
Sitting on the couch together in her daughter’s apartment, she took my hand and said, “Everything I have left I am wearing. I’ve got rid of the lot. I don’t want the kids to have to mess around with all my things when I’m gone”.
I was so impressed, not just by Jane’s organisation and foresight (which I knew all about), but by her generosity.
Leaving very few possessions behind was one of the greatest parting gifts she could give to her children.
Since then I’ve been thinking a lot about the things we leave behind when we die.
By ‘things’, I don’t mean the intangibles like the life lessons, memories and enduring love that sustain family and friends. Or the legacy of work done in our professional lives or the unpaid work in the community.
But the actual things. Candlesticks. Sporting trophies. Mugs.
You know, the kind of items that we occasionally wonder might be worth some mind-boggling sum if we ever managed to take them to an Antiques Roadshow. The millions, maybe billions of items, continuously gathering dust in the houses and apartments across the nation.
Of course, it has something to do with my stage of life.
As I head towards 50, I see many of my friends going through the emotionally draining and physically exhausting process of helping a sick or widowed parent pack up and sell a family home.
Friends tell me about the days and nights spent working through boxes and boxes of candlesticks, sporting trophies and mugs with an ailing or grieving parent.
And spending days working out what goes in the bin, gets donated to charity, given away or taken to the next dwelling, which is by necessity a half or a quarter of the size of the home they’re leaving.
It’s also a story echoed in the research I do with Australians.
And, on the whole, a story mostly told by daughters and granddaughters. In fact, I’ve found it’s largely these women responsible for this forced decluttering and managing of parents’ affairs at this time of life.
It takes its toll on these women, not just physically and emotionally, but even financially as they have to pull back from work to play this caring role.
It often comes at a time when the daughters are at the tail end of caring for their own children. A time when they thought they might have a chance to increase their paid work, or spend time and energy on personal goals.
Then suddenly, these women have responsibilities to parents almost as demanding as those associated with small children — with all the uncertainty and disruption, and far less of the joy that comes with looking after little ones.
In my role as a social researcher, I’ve met mothers trying to support a child through a final year of school — at the same time as helping a widowed parent find retirement living and pack up and sell their family home.
Death-induced decluttering. At the very moment you should be taking time and energy to grieve, you are knee-deep in cardboard boxes and vintage knick-knacks.
Decluttering is a global trend in affluent countries like Australia, led by a slew of ‘less is more’ advocates like author Marie Kondo and Oprah’s organising guru, Peter Walsh.
There’s Swedish death cleaning, döstädning, which is the practice of mindfully clearing out one’s own possessions during later years.
Not to mention the influential effects of the ABC’s War on Waste and how it’s challenging all of us to be more aware of what we buy and what we toss.
They’re all terrific developments. Although I worry that these messages sometimes get framed in terms of ‘good taste’ and ‘shame’.
Is it easier for some of us to declutter than it is for others? Is there a ‘clutter divide’ where the more affluent you are, the easier it is to live with less?
A single wealthy man who can afford a sparsely and elegantly decorated apartment in the centre of the city can certainly make do with fewer things, compared to a larger family living in the suburbs without social and cultural amenities within walking distance.
That said, visiting thousands of houses all over Australia for my work has made me realise many of us are living in homes full of things we find hard to get rid of — that is, until something forces us to.
Downsizing in a crisis (death, financial difficulty, illness) is doubly distressing.
I wonder whether it makes better sense to chuck the stuff and move to something smaller long before the inevitable happens.
If I am lucky enough to die of old age, I know what I want to leave behind. Saying goodbye to Jane on that couch confirmed it for me.
I will shuffle off this mortal coil with nothing left but a silk nightie, some precious paintings on the walls around me, and a handful of photos in my bony hands.