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.
Funeral customs are changing dramatically, leaving families with more decisions to make at just the moment they may be least prepared to make them. Making decisions ahead of time honors “ancient wisdom.”
Yogi Berra once quipped, “The future ain’t what it used to be.” If there is a time that I see church parishioners facing Yogi’s confused logic, it is when dealing with decision making for a funeral and burial of a loved one. American culture is going through a tumultuous season of cultural change. The last time that people want to deal with more change is during the loss and grief of a loved one’s death. But the reality is that the American funeral experience has changed and is continuing to change dramatically.
When I performed my first funeral in 1993, there was a certain set of expectations for what would happen when someone died. It almost always went like this. Three days after the person died there would be a funeral, or rarer then, a memorial service (a worship service without the body of the deceased). The evening before the funeral there would be a visitation at the funeral home to view the body and share condolences with the family. Usually at 11 a.m. or at 2 p.m. the funeral would take place at the church. Then the family, followed by friends, would drive in procession with headlights on to the cemetery for a brief committal service. After the committal the family returned to the church for a meal and time to visit. On occasion I have been invited to drop by the family home afterwards when all had been finished and there was nothing left to do but sip bourbon and visit.
Yes, this is a very Presbyterian, and a very Southern Presbyterian funeral experience. We value brevity when it comes to funeral worship services, and we value lingering when it comes to visiting afterwards. Of course, there are many variations on a theme played out in different religious traditions, and all of them have their strengths and weaknesses. I admire the African-American Baptist tradition, which has been able to resist many of the negative consumeristic trends involved with funerals, but I do not possess the proclamatory wind to preside for several hours over a funeral service.
Things have certainly changed from when a traditional schedule was the expected norm. There are many reasons for the changes that now often require families to design their own funeral rituals. One of the most significant is that in 1970 only 5% of the American population was cremated after death. Last year 55% chose cremation. The cost of burial with embalming of the body, metal casket and metal vault can run about $11,000, and of course this has been a motivating factor for choosing cremation.
Not too long ago I performed a funeral for the beloved family doctor of his remote rural village. He had made all the arrangements well in advance of his death. Ben was buried in a simple pine box that he had made himself and was interred on a hill at the back of his farm. He had a friend who had prepared his body after death and kept the body refrigerated until his family could see it. The doctor was a keen environmental steward of his farm as well as his community, and he did not wish to add the mixture of formaldehyde, methanol and humectants to the soil of his farm. This makes me wonder what really is traditional after all, because the doctor’s method would have been common place before industrialization and the Civil War. (Check out this website for different state requirements for a funeral at home.)
Ben was on to something. Think about what you would like your funeral to be. Talk to others about it. Don’t get scared off by our American cultural reluctance to have a conversation about death. Do you want to be cremated or embalmed? There are other options now to cremation than burning the body; it can also be done with water. Do you want a religious service to mark the occasion? What will be most helpful for your surviving family? I think that religious services can be deeply moving and genuinely helpful for people. But I should think that. I am a pastor. I know that this is not true for everyone. The point is to think about this beforehand and share with your family what is important to you and make plans for it.
Let me put in a word for funeral home directors. It has been my good fortune to be friends with a couple of them and a golf partner with one of them. I have often heard terribly negative caricatures of funeral home directors, most of the time from people whose only experience has been attending a few funerals. My experience has shown them to be people who pursue their work as a calling. I have watched them at times provide funeral services for poor families with disregard to the business end of their work. If you are interested in learning what a funeral director’s life is like, then read Thomas Lynch’s The Undertaking: Life Studies from the Dismal Trade. He is an American Book Award winner writer and a funeral home director in his small town of Milford, Michigan.
Lynch gives us, who live in what is often a death-denying culture, this sober reminder.
This is the central fact of my business – that there is nothing, once you are dead, that can be done to you or for you or with you or about you that will do you any good or any harm; that any damage or decency we do accrues to the living, to whom your death happens, if it really happens to anyone. The living have to live with it. You don’t. Theirs is the grief or gladness your death brings. Theirs is the loss or gain of it. Theirs is the pain and pleasure of memory.
The practical wisdom of these words reminds us that when the time finally comes for you or for me as it will for us all, water cremation, fire cremation, embalming, metal vaults, pine boxes, columnbariums, floral wreaths, funeral homilies, favorite hymns, presented flags and headstones will not matter to us. But some of these things will matter and give meaning to those who survive us.
I realize I’m not making any of this process easier. That’s my point. It’s not easy. And the ever-growing options only make for more complicated decisions. But reflecting upon death and dying and thinking about what our end will be like for others make us better human beings. And that is nothing new at all. That is ancient wisdom.
As a society, we are not very sophisticated when we talk about serious illness and death. We talk of fighting, of battling against, of staying positive and of not giving up.
Of course, this has implications for those whose illness continues or worsens. Are they losing the fight? And what does it mean about their attitude? Have they given in?
In our research, recently published in Palliative Medicine, we found the power of language is particularly poignant when it comes to how clinicians talk about end of life care. It can lead to misunderstandings, but also sadly, even tragically, to suffering and missed opportunities.
We’re looking into this at the Victorian Comprehensive Cancer Centre’s Palliative Medicine Research Group. Based at St Vincent’s Hospital Melbourne, our group brings together clinicians, researchers and allied health professionals, seeking to effect positive and systemic change in palliative care practice.
Our language around illness is reflected in the media, as we read with excitement of “a breakthrough in the fight against cancer/dementia/heart disease” – insert your illness of interest.
However, palliative care in the media and in the lives of real people, of patients, is often discussed as “there was nothing more that could be done, so they went into palliative care”.
The language that we use has direct and very serious consequences. To say that “there was no more treatment, so they had palliative care” implies that palliative care is not treatment. This language serves to limit possibilities since it negates the opportunity to choose palliative care, and the benefits that it may provide.
Why does this language matter?
Well firstly, it propagates a misperception about palliative care. Contrary to “no more to be done” and “non-treatment”, palliative care is highly effective and beneficial.
It has been proven in clinical trials to ensure better pain and symptom relief and, for many, means better quality of life than when patients are solely cared for by usual health providers such as oncology, respiratory and cardiology services.
Palliative care has also been shown to improve patients’ satisfaction with care, as they have more information and understanding of their circumstances and the choices available to them. It means they are empowered to make decisions that match their values – which, for many, means less time in hospital, and being more likely to die at home.
It can be common for doctors to avoid talking about palliative care until death is very close.
Research has shown that palliative care means that when people do die, their families experience less distress and have better health outcomes themselves.
And it means, based on a number of studies, that people live longer. Yes, palliative care improves survival – as much as a number of newer chemotherapy treatments. And all of these benefits increase if palliative care is introduced early.
None of this sounds like “no more can be done” or a “non-treatment option”. Yet because of the language used and the associated stigma, patients (and doctors) are fearful of mentioning palliative care, much less to introduce it early.
Instead, patients think that palliative care equals death, and worse still, death in an institution “where people do things to you”, as one of our research participants said; where there are no choices.
This is the very antithesis of what palliative care seeks, and is proven to do.
And so, as if even the words ‘palliative care’ will themselves, bring about death, we avoid it until death is very close. Palliative care, raised in these circumstances, becomes linked with imminent death, and the cycle of misperception and missed opportunities (and poor care) continues.
These missed opportunities may include a lifetime of valuable things to be said to someone we love, a trip to a special place, or a chance to think through whether a further round of treatment will enable achievement of an important goal.
And poor care may include pain that is not well managed for six of the last eight months, or a young child that wonders if Dad’s illness was caused by something they did.
So what needs to be done?
Clinical trials into palliative care find ensure better pain and symptom relief, and better quality of life.
We need to listen to the evidence. We need to think about the language that we use to speak about illness and death, to think about its impact for readers of today, and for patients of tomorrow.
We need to be sensitive and direct. And we need to learn to sit with the discomfort that not all is black or white, fighting or giving up, treatment or no treatment. That things that are hard to consider and face will inevitably mean hard conversations are to be had.
These conversations, though difficult, can be immensely rewarding and also may be the most important conversations for a person’s life. We all have a responsibility and a role to ensure our language facilitates understanding and choice, not its opposite.
Caroline Yongue had taken on the task of creating a conservation burial ground in Mills River, but the land was an impenetrable mass of weeds: hundreds of young Bradford pear trees, poison ivy growing high and dense, kudzu and bittersweet choking trees. You couldn’t walk through it.
She says, “There was kind of a freak-out for me, like, ‘Holy crap, what am I going to do with this?’”
But Caroline has a way with fear. It was one reason why her Buddhist teacher asked her to start doing death care. “She saw in me that I had a willingness to step past my fear,” Caroline says. “That when it arose, I saw it as an opportunity to go beyond. I didn’t let it stop me.”
Over 20 years ago, her teacher asked her to figure out how to take care of a dead body, without embalming, to be cared for by friends and family. “I thought it was an unusual question,” Caroline says, “but I trusted her that she knew my practice, so I said okay.”
At the time, Caroline says, “I had never seen death!”
She went through the process for the first time with an ailing kitten. “I talked to him about what was happening and I held him as he was dying.” Afterward, she laid out his tiny body, allowing time for the spirit to pass from the body.
When Ruby, the mother of a friend, was dying, Caroline asked if she would be willing to help her train and Ruby agreed. “I interviewed her about her death and dying, what she wanted, what were her spiritual practices, what did she believe was going to happen with her body after death,” Caroline says. “We provided all those things for Ruby as she was dying and at her death.”
But to go there, she had to step through fear. She says, “There was a voice in the back of my head going, ‘What are you doing? You don’t know what you’re doing! You can’t do this. You’re a fraud, blah blah blah blah.’ But I just kept doing it. I learned. And I continue to learn.”
Restoring the land
Caroline began serving as a death doula and death midwife. She started the Center for End of Life Transitions, facilitating home funerals and teaching people how to prepare for death. And she was interested in starting a conservation burial ground.
The time felt right in 2007, when she was newly married. She found 30 acres in Black Mountain. But things didn’t go according to plan, as the economy tanked. Caroline went through a serious illness and a divorce. She let the idea go.
Then, in 2014, a friend reached out. Her church in Mills River — Unity Center of the Blue Ridge — owned some extra land and they were interested in starting a green burial ground. Caroline decided to sell her home in West Asheville and then gave the money to her Buddhist group, which purchased the land to start Carolina Memorial Sanctuary.
That’s how she found herself in charge of 11 acres of vigorous weeds.
“One of the good things and the bad things about me is I can envision,” Caroline says. “I can manifest things just by thinking about it and envisioning it. So I just trusted the process. There were certainly times when I was like, ‘What the bleep am I doing?’ Part of this is my Buddhist practice. I just go, ‘Well, you just do the next thing.’”
One of her goals was to ensure the lasting conservation of the land. But, when Kieran Roe and Tom Fanslow from Conserving Carolina — a local land trust — first came out for a visit, they told Caroline that the land didn’t have much going for it, ecologically. There is a creek on the property that flows into the French Broad River and a wetland that had been partially filled in. So, it had potential, but it would take a lot of work to bring it back as a healthy natural habitat.
Caroline went for it. First, the sanctuary hired a contractor to clear out undesirable trees. For a year, Caroline and her small staff just watched what came back. The next step was to start removing invasives.
The land is a work-in-progress, with Caroline pointing out where an archway will go, a white oak, a composting toilet, graveled paths, a garage. In August, as she walked with her dog, Jasper, the meadow was full of Joe Pye Weed, with globes of purple blossoms swaying well above her head. Goldenrod, ironweed and butterfly weed were blooming, with monarch and swallowtail butterflies flitting over the flowers.
Recently, Conserving Carolina helped the sanctuary secure grants for an ambitious restoration project—to reclaim the wetland, reshape eroding stream banks and remove invasives, including kudzu and bamboo. Soon, the land trust and the sanctuary will finalize a conservation easement to ensure that the land will be protected forever. Carolina Memorial Sanctuary also donates a portion of the sale of burial sites to support Conserving Carolina.
Taking death back
In these natural surroundings, people give their loved ones back to the earth — both people and pets. And the meadow, woodland, wetland and stream create a place where people want to come back and reflect.
The sanctuary offers sites to scatter ashes or bury a body, in harmony with nature. Bodies are buried without embalming fluid, in a shroud or coffin that will break down underground. Graves are dug only three feet deep so that plants can benefit from the nutrients. Ashes are amended in order to keep the soil chemistry balanced.
Each rite of passage is different, Caroline says. They’ve had Christian, Jewish, Buddhist and Wiccan ceremonies. “I have to get out of the way, because I don’t know what their experience needs to be,” she says. “You’ve always got to be stepping back, stepping out of me so that what is greater can show itself.”
People may help carry in their loved one’s body or cover it with earth, in some cases having helped to prepare the body. Caroline says, “The other option, that the body’s gone and you might be able to see it at a funeral home embalmed and it doesn’t look like your mother and you don’t want to touch it and you don’t want to emote and you’re in a hurry — it’s so unnatural. Now being able to do this, by the time people finish covering the grave, they’re laughing, they’re not crying anymore. They’re just so joyous, they’re chatting, they’re telling stories about the person.”
Through all of her death care work, she says, “I think the idea is helping people take death back into their own hands and not be afraid of it. It’s part of life. And there’s a great healing that happens.”
She tells a story of one man whose husband died suddenly. When he contacted Caroline, the body had already been taken away, but she let him know that they could bring it back to their home. Before the burial, she helped the man and his friends prepare the body.
“I just facilitated the home funeral where I just directed his gay friends to bathe and dress this man,” she says. “We just stood back and provided support and they did it. It was one of the most beautiful home funerals I’ve ever done because these men were taking care of this man. And the man whose husband died said that because he was able to still participate — even though he died suddenly — it was so transforming to him.”
A legendary design firm, a corporate executive, and a Buddhist-hospice director take on the end of life.
By Jon Mooallem
There’s an ugliness — an inelegance — to death that Paul Bennett gradually came to find unacceptable. It seems to offend him the way a clumsy, counterintuitive kitchen tool might, or a frumpy font. At first, that disgruntlement was just “a whisper in my mind,” Bennett explains. “But it’s gone from being a whisper to a roar.” The solution, when it finally occurred to him, felt obvious. “Oh,” he told himself. “You need to redesign death.”
Bennett is 51 — 30.7 years to go, if the demographic data is reliable — a blindingly energetic British man with unruly brown hair. He works as chief creative officer at Ideo, the global design firm that’s renowned for its intuitive, wizardly touch. Over its 25-year history, as Ideo has expanded from simple product design into branding, organizational design, and management consulting, it has worked in virtually every corner of our economy: A list of recent clients includes Genentech, Bank of America, the Centers for Disease Control, JetBlue, and the Today show. Ideo’s founders designed Apple’s first mouse and the stand-up toothpaste tube. Its designers have overhauled San Francisco’s public school-lunch program and helped reorganize government agencies in Singapore and Dubai. They’ve developed a toilet for low-income families in Ghana. They’ve built a better Pringle.
Often, the firm’s brilliance rests on showing clients something obvious that’s been overlooked, or cutting through buildups of false assumptions. “I think we sense-make really well,” Bennett told me. One example he likes to cite involved attaching mirrors to the gurneys at a Minnesota hospital so that patients could actually make eye contact with the doctors and nurses wheeling them around.
Bennett works out of Ideo’s stylish San Francisco office, at Pier 28 on the Embarcadero, and like others operating at the top of the Bay Area’s innovation economy, he doesn’t have a concrete job description: It can be hard for an outsider to sense-make what he does. According to his company bio, he is responsible for “cross-pollination of ideas and insights” and “traveling, learning.” As Ideo has grown, the company has delved into more abstract, conceptual work, driven not by specific clients but by Bennett and the other partners’ own evolving fascinations. Bennett’s role is to stoke the firm’s bigger ambitions, then go out and excite clients about them, too, transforming those personal obsessions into business opportunities. (When we met one morning last spring, he’d just returned from chatting about “reinventing Judaism” with some unbelievably fantastic rabbi in Los Angeles. “I love this guy,” Bennett raved.) He is quick-witted, blunt, and irrepressibly optimistic about nearly everything. In meetings you can feel junior designers’ eagerness to impress him — to electrify him — and he carries himself with a kind of fidgety, ecstatic gravitas. Imagine Don Draper played by Ricky Gervais.
Bennett’s fixation on death began with the death of his father. He was close to his dad; in a recent talk, he likened his childhood to the plot of Billy Elliot, a story “about a little nelly gay boy who twirled in the northeast of England” and the exceedingly masculine father who dared to love him. Bennett, in fact, traces his identity as a designer to the day in 1974 when his father, Jim, a former military pilot, brought home The Golden Hands Encyclopedia of Crafts. Jim Bennett then spent the next two years sitting with his son, making macramé and knitting God’s eyes, so that sensitive little kid could explore his talent and find his confidence. In 2001, Bennett’s father wound up in a hospital bed, stricken with bone cancer. Bennett was 5,000 miles away at home in San Francisco. He told his father he’d be on the next flight, but Jim ordered him not to come. Eventually, Bennett understood why. His father had painstakingly maintained his dignity his entire life. Now “he was trying to somehow control that experience,” Bennett says. “He was designing the last granule of what he had left: his death.”
Ideo’s Paul Bennett wants to change how we think about death.
So much about death is agonizingly unknowable: When. Where. Lymphoma or lightning strike. But Bennett recognized there are still dimensions of the experience under our control. He started zeroing in on all the unspoken decisions around that inevitability: the aesthetics of hospitals, the assumptions and values that inform doctors’ and families’ decisions, the ways we grieve, the tone of funerals, the sentimentality, the fear, the schlock. The entire scaffolding our culture has built around death, purportedly to make it more bearable, suddenly felt unimaginative and desperately out of date. “All those things matter tremendously,” Bennett told me, “and they’re design opportunities.” With just a little attention, it seemed — a few metaphorical mirrors affixed to our gurneys at just the right angle — he might be able to refract some of the horror and hopelessness of death into more transcendent feelings of awe and wonder and beauty.
In 2013, bennett started sharing his ideas with the other partners at Ideo, selling them on death as an overlooked area of the culture where the firm could make an impact. He had a very unspecific, simple goal: “I don’t want death to be such a downer,” he told me. And he was undaunted by all the dourness humanity has built up around the experience over the last 200,000 years. “It’s just another design challenge,” he said. His ambition bordered on hubris, but generally felt too child-like, too obliviously joyful, to be unlikable. One time I heard him complain that death wasn’t “alive and sunny.”
Ideo realized there was a big opportunity in death. There are currently 76 million American baby boomers inching reticently in its direction. “We’re a generation that’s used to radicalizing things,” Bennett explains. Now, as many boomers watch their parents die just as Bennett had, accepting the soulless, one-size-fits-all deaths that society deals them, they seem to be rebelling one last time. Everywhere Bennett looked — New York Times opinion pieces and Frontline specials; assisted-suicide laws; the grassroots Death Café movement, where folks get together for tea and cake and talk about their mortality; a campaign in La Crosse, Wisconsin, that got 96 percent of the entire town to fill out advance directives, spelling out their wishes for end-of-life care — he saw his generation striving to make death more palatable, more expressive. And at the far extreme is the crop of phenomenally well-capitalized biotech startups working to get around the insufferable inconvenience of death altogether, either through science-fictionesque “radical life extension” treatments or by uploading your consciousness to the cloud. (These include Calico — Google’s so-called “Immortality Project” — and J. Craig Venter’s company Human Longevity, Inc. The founder of Oracle, Larry Ellison, who set up the Ellison Medical Foundation to defeat death, has explained his motivation succinctly: “Death has never made any sense to me.”) One way or another, Bennett told me, “We’re all holding hands and saying, ‘Forget that shit. Not going to happen.’”
I followed Bennett’s work over the past year — a journey that, in the end, may reveal less about the death of people than it does about the life of ideas, particularly the brand of Big Idea that distinctly Californian institutions like Ideo send careening through the culture. Right away, Bennett understood it would take years to see the sort of wholesale shift he was imagining — a generation or more. There was so much to do, he could really start anywhere. He just needed to find a few suitable clients, to locate a few fissures through which a genuinely different conversation about death could begin to flow. And because he was looking in San Francisco, in the year 2014, the first one he found was a startup building an app.
The app was called After I Go. The president and ceo of the company building it, Paul Gaffney, had founded two other startups but had spent most of his career working near the top of large corporations such as Charles Schwab, Office Depot, Staples, and aaa, primarily helping them find their footing online. He was 47, a loose and affable guy despite being excruciatingly analytic at his core. Once, when I asked Gaffney about himself, he explained that his “personal value proposition” is “establishing a vision for a new outcome particularly in consumer-related spaces enabled by the novel use of technology” — but he managed to sound human when he said it, even warm.
Gaffney described After I Go as TurboTax for death: a straightforward app that would allow people to write wills or advance directives and, in general, preemptively smooth out the many ancillary miseries that can ripple through a family when someone dies. Bank accounts, life-insurance policy numbers, user names and passwords, what night the garbage goes out — all of it could be seamlessly passed on. Whatever fear or despair people feel about death is only heightened by the fear that, because they never got around to making the necessary preparations, their death might burden the people they love. Gaffney assumed there’d be a big market for an app that eliminated that risk. “Simply providing people with that sense of organization would be a huge emotional payoff,” he said. But he was spectacularly wrong. Bouncing his ideas off potential investors, he quickly understood that no one welcomed a chance to prepare for death. It’s thankless drudgery — plus, it reminds you you’re going to die.
Gaffney realized he couldn’t just build the right tool; he also had to build the motivation to do the job in the first place. That’s what people would pay for. Suddenly, the work After I Go needed to do was no longer rational but emotional — which is to say, far outside Gaffney’s personal value proposition. (“I learned a long time ago that I’m not a good test case for how human beings respond,” he explains.) And so he hired Ideo to help.
The Convening, as everyone called the first After I Go strategy session, happened early last April, not long into Gaffney’s three-month residency at Ideo. About 25 people gathered in the large studio of the firm’s San Francisco office, arrayed on colorful armchairs and couches.
“How can death be designed?” Paul Bennett said, rising to set the tone. He explained that he’d grown up in Singapore, where it’s customary to burn intricate paper sculptures at funerals: paper televisions, paper houses, paper Cadillacs — all kinds of gorgeous extravagances that would, via their rising smoke, accompany the deceased into the beyond. As Bennett put it, “They wanted the dead person to go into the afterlife with all this awesome shit!” But Bennett’s family eventually returned to England, he went on, a place where even the joyful parts of life were muted by the gray and cold. And he was shocked by how different funerals were there, how leaden and awful. It was proof, he explained to the Convening, that how we feel about death is up to us. Then he looked at everyone and, with great earnestness, asked: “Why can’t death feel more like life?”
From there, the Convening broke into four smaller circles to think through the possibilities for After I Go. Bennett assumed the role of facilitator and secretary in his group, manically scribbling notes with a Sharpie. When one woman shared a clip on her laptop of a New Orleans jazz band marching behind a casket, Bennett told her, “I love it. I’m writing ‘jazz death.’” He scribbled jazz death on a pink Post-it and slapped it against the wall.
Paul Gaffney was seated in Bennett’s circle and explained that, like Bennett, his interest in death had been stoked by recent personal experience. His wife and her siblings were now organizing their parents’ affairs after their father had been diagnosed with dementia. It sharpened Gaffney’s understanding of just how much disarray survivors can be left to organize, and how much can get lost. Still, Gaffney confessed, while he’s filed his own important information in an orange folder at home, and periodically reminds his wife it’s there, he rarely gets around to updating it. “What’s your folder called?” Bennett asked him, Sharpie at the ready. “It’s called the Orange Folder,” Gaffney said.
From there, Bennett started posing a series of “how-might-we’s” to the group — Ideo-speak, it seemed, for questions. The first was, How might we get people to start using After I Go? Ideas started firing — “death Tupperware parties,” “will weekends” for couples in Napa, commandeering Groundhog Day as a national “Death Preparedness Day” — until someone brought the conversation back to Gaffney’s orange folder. Maybe After I Go needed to sell a physical object like that in stores, with instructions and a download code inside; it would be a kind of totem, committing you symbolically to starting the preparation process. This idea felt promising until one woman asked, “But if it’s in the consumer space, what’s the draw?”
And there was the underlying tension. In short, why would anyone buy death? Consumer culture is always aspirational: We’re lured along by desire and joy, chasing ever-receding rewards. Gaffney’s challenge seemed to be convincing consumers to step off that rapturous treadmill and think hard about the very thing it was arguably designed to distract us from. That’s why, in part, the business excited Paul Bennett: The app could help reintegrate death into our lives. It could encourage us to start making peace with the inevitability of dying and start making decisions to shape its other aspects — here and now, and not only at the last moment, like Bennett’s father had, when there are few decisions left to make. The question, really, was how to lure ordinary, preoccupied people into contemplating big, transcendent ideas like mortality, continuity, legacy. Once, religion had cleared that space in our lives. Now it was up to Ideo to whiteboard it out.
Eventually the group moved on to another exercise using a handout about Bob and Sherry Alvi, a fictional couple outside Boston. There was even a photo of the Alvis with their two daughters: They looked cornfed and chipper, grinning in front of a fireplace. Bob, the handout explained, was an After I Go user. He was also almost dead; he’d been in a car accident and was in critical condition. And so the Alvis found themselves on the cusp of one of After I Go’s Key Brand Moments — which is to say, death. The question was, How should After I Go make contact with the newly widowed Sherrys of the world?
The circle was quiet. This one was trickier. You can’t just email her, right? The consensus was no, though the idea seemed to hang there momentarily until Bennett finally concurred. (“Death feels very analog,” he explained.) Someone proposed sending Sherry a “condolence kit”: a courier could bring all of Bob’s passwords and information along with a nice bottle of wine. Then, quietly, one man asked, Why not deliver the information to Sherry in a letter, handwritten in advance by Bob?
Instantly, the circle felt electric. Bennett was vibrating; he loved it. Others chimed in, building off the idea, and Bennett began writing madly across multiple Post-its, not coming up for air. (An awkward disclosure: The person who suggested the handwritten-letter idea was me; Ideo strongly encouraged me to participate in the Convening, so I did.) Bennett kept on scribbling. When he finally turned around, a chain of Post-Its behind him read: “Selling a service → Delivering a Message → Executing A Wish → Providing Comfort.” This was the magnificent evolution that Gaffney’s company had just hurtled through in his mind. After I Go could carry back so much more than passwords and legal information from beyond; it could transmit memories, messages, love. That was the emotional payoff, the only way to entice people into filling out all those tedious, frightening forms. Bennett tapped at the word comfort. Then he circled it. “That’s our big idea,” he said. “Comfort is the product. That’s the genius of it. You sell that.”
They had started somewhere practical — living wills, checking accounts, who should cancel the gardener — and landed somewhere metaphysical: an opportunity to comfort your widow from the grave. It was break time. Gaffney and the Ideo designers got up for coffee and snacks, but Bennett stayed at the wall, writing more Post-its, shuffling and collating them, preparing a little presentation so that, when all four circles reconvened, he could unveil these insights for the group.
“We’re moving from estate planning to story building,” he said, to no one in particular. Then he sat cross-legged on the carpet and waited, twirling his Sharpie by the bent clip on its cap.
In the weeks after the Convening, Gaffney and a handful of Ideo designers got to work in a small windowless room at the southern edge of Ideo’s office. Gradually, they covered the walls in sketches, clippings, and printouts, teasing out the tone and aesthetic of the app and imagining all possible features they might build and test.
Some of the drier mock-ups included pages to help users draft a will or designate power of attorney, or offered portals into a network of vetted legal professionals who could help. But most took bigger, more inventive leaps forward, such as allowing users to curate shareable collections of “funeral inspirations” like a Pinterest page or Amazon wish list; samples were pinned with photos of blood-orange spritzers, Japanese lanterns, and succulents. (“For my sunset party, I want deviled eggs,” one read.) The team’s most mind-bending innovation was something it called After-Gifting, whereby a person could arrange to dispense preselected birthday gifts to family members for years after his or her death. Baby booties made from your favorite jacket could be delivered to a newborn child you’d never meet. The dead might also send time-delayed text messages on special occasions, or just to say hi. After I Go could even digitize your handwriting into a font so that fresh, personalized content could continue to be generated on your behalf.
In other words, After I Go wasn’t only a tool for mundane, administrative death prep anymore. It had inflated into something far bigger — even if, in this freewheeling brainstorming phase, it wasn’t always 100 percent intelligible what that was. There was also a strange shortsightedness to some of the team’s ideas. Ginning up years’ worth of texts for your widow might comfort the person who is dying, for example, but would an actual widow want to keep receiving them? (Imagine if one landed three years later while she was on a date.) Another write-up, meanwhile, explained an alternate brand concept the team had worked up called Bon Voyage. Bon Voyage was all about celebrating “our aspirational desire for richness, beauty and simplicity in this life and whatever comes next.” To illustrate that theme, designers had mocked up the Bon Voyage account of a hypothetical user named Wilfredo.
The screen caps looked like a Madewell catalog — spare and white, with old childhood photos of the deceased arranged around quotes from loved ones and floating images of his cherished possessions. It was gorgeous, but also jarring; essentially, they’d built a luxury brand for death. And yet any feeling of elitism or superficiality was also undercut, albeit a little awkwardly, by their choice of Wilfredo. “He was the best Midas muffler manager we ever had,” one testimonial read. Nearby was a photo of the canteen Wilfredo carried “while serving as a Sandinista.”
That spring, Gaffney’s original, strait-laced vision of the app began to recede into a cloud of more emotionally indulgent features and evocative marketing copy. This was fine with Gaffney, even thrilling: Investors, he found, were responding to the app in an entirely new way. (At one meeting, Gaffney says, a prominent venture capitalist interrupted his pitch and shouted, approvingly: “I want my mother’s damn frittata recipe!”) Gaffney told me, “We now have to pivot and operate exactly like any other startup would.” All he wanted was to build a product that people would use.
As executive director of San Francisco’s Zen Hospice Project, BJ Miller has helped pioneer the field of palliative care.
One afternoon at the end of April, in the middle of that pivot, Gaffney and Paul Bennett gave a short tour of the project to a man named BJ Miller.
Miller is the executive director of San Francisco’s Zen Hospice Project, which since 1987 has quietly helped pioneer the field of palliative care. Loosely defined, palliative care is an empathic approach to medicine and end-of-life care that considers the many nuanced emotional, spiritual, and physical experiences of the patient and his or her overall well-being, rather than formulaically treating a medical condition. Zen Hospice deploys a corps of more than a hundred trained volunteers into homes and at a city hospital, but its centerpiece is a tranquil six-bedroom Victorian home in Hayes Valley known as the Guest House.
The Guest House has an extraordinary feel to it, deeply spiritual without being overbearing or mushy. Residents are invited to meditate with staff and often gather in the kitchen to casually enjoy the rituals and smells of cooking, even if they’re unable to eat. Miller told me he recently supported the decision of a woman at the Guest House with terminal cancer to start smoking again — as he explained it, it was worth it for her to feel and use the very lungs she was losing; it deepened her experience of letting go. In short, Miller explained, Zen Hospice’s power comes from recognizing that “dying is a human act, not just a medical one.”
Miller had been introduced to Ideo about a year earlier, and quickly achieved a kind of guru status among many at the firm. (“He came in and everyone instantly fell in love with him,” one Ideo staffer told me.) He is 44 and preternaturally poised, the sort of person who, after speaking about death and dying on a public-radio call-in show last year, not only read the comments that poured onto the show’s site later, but responded, compassionately, to each one. In person he is blessed with a blazing magnetism that can’t be overstated — a recent acquaintance described him to me, only half jokingly, as “the most magnificent human in the world” — and could pass easily as a Hollywood leading man, with tousled, slightly silvering dark hair and a dimpled grin. He is also missing half of his left arm and has two prosthetic legs.
In 1990, while an undergraduate at Princeton, Miller was out late with some friends and decided, for the fun of it, to climb atop an electric train car. The electrical current arced from a piece of equipment into his wristwatch, sending 11,000 volts through his arm and out his feet, nearly killing him. (Miller still wears the watch occasionally; it works.)
His recovery was long and taxing, but the injury intensified his intellectual curiosity about death and suffering. When Miller returned to school, he began studying art history, fascinated by how artists make sense of the darkness and pain of the human experience. Then, after playing volleyball in the Paralympic Games and founding a tea company, he went to medical school and eventually found his calling in palliative care, especially for terminal patients. (He still practices medicine part-time at ucsf.) Miller felt he was uniquely qualified. “A lot of physicians will work their whole life on a disease that they’ll never have,” he says. Miller, at least, had come as close to dying as anyone could
Paul Bennett was drawn to Miller immediately. Miller was a physician, intimately familiar with how bodies fail and shut down, but he’d also spent the two decades since his accident attuning himself to the same aesthetic dimensions and deficiencies of the dying process that Bennett was now obsessed with. That is, Miller had a profound head start when it came to redesigning death, and he and Bennett quickly fell into a wide-ranging dialogue. In an email to Bennett early last year, for example, Miller wrote: “I’d say that humans have thrived by turning every need — every vulnerability — into something in its own right.” Shelter becomes architecture, he noted. Reproduction gets wrapped in romance and love. And “think of all the cultural significance and artistry and labor that goes into [eating].” Miller wanted to bring that same creative power and meaning-making to death, but he had trouble finding a sounding board for those ideas in the medical community. He was as grateful to find Bennett as Bennett was to find him
Last February, Bennett invited Miller to an orientation for a small team of Ideo designers on the work he was hoping to undertake. Because it felt wrong to talk about death in a conference room, some junior designers took it upon themselves to build a Death Yurt at the center of Ideo’s studio — a black, candlelit enclosure reachable only by crawling through a long, dark tunnel. (“It was like a sweat lodge,” Bennett says.) As homework, Bennett had asked everyone to design their own funeral, and he kicked off the discussion. He explained he’s always been terrified by the knowledge that he’ll die alone. (Bennett’s partner is 15 years older than he is, and they have no children.) But lately he had been reshaping the image in his mind. If he was going to die alone, he said, he’d like to do it outside, in Iceland, under the quivering brilliance of the Northern Lights.
Huddled in the Death Yurt, Miller felt simultaneously invigorated and dubious. On the one hand, this was precisely the sort of more joyous conversation he wanted to encourage people to have long in advance of their own deaths. (“I felt like I was watching Paul be converted to the possibilities,” he says.) Miller had seen firsthand that, because we spend our entire lives avoiding thinking about death, when it finally comes into view, there’s a thicket of panic, denial, or disbelief to cut through before people can focus, more mindfully, on the experience and begin to make decisions to improve their last days. Then, of course, you still have to reconcile those hopes with the exigencies of the health care system, which can be torturously inflexible. When you sit with a dying person, Miller says, “Time is always in the room. … At best, you’re able to salvage some peace or comfort for a moment.”
And yet Miller also knew that these more imaginative conversations about death needed to be channeled in just the right way. In the Death Yurt, Bennett and his team seemed to be caught up in what Miller recognized as the “endocrine rush” of finally facing death head-on. That exuberance, while helpful, needs to be moved past; otherwise, it can wind up derailing more practical conversations, or alienating people on aesthetic or socioeconomic grounds. For one thing, Miller later told me, “Paul’s Iceland idea presupposes you can time all that” — that you could fly him over and wheel him out at just the right moment, then cue the Lights. “You don’t want to shit on somebody’s beautiful idea,” Miller said, but “if you start talking about dying well or dying a ‘good death,’ then you also set people up to fail at death
Miller seemed to bring that same sobering perspective to his tour of the After I Go workshop. At one point, the lead Ideo designer on the project, Denise Burchell, was talking him through a potential After-Gifting feature the team would eventually call Remembrance Maps: walking tours of sentimental locations, left to loved ones either as actual maps or location-based software. For example, your deceased grandfather could ping you to suggest you go sit on a particular park bench where he and your grandmother used to enjoy the view, 300 yards from where you’re standing. The power of features like this, Burchell explained, was that you wouldn’t be showering your loved ones with “generic memories” but “personally relevant ones.” “These,” she said, “are your memories.”
“Can I ask you a question?” Miller interjected politely. “The quest for immortality in general is very problematic,” he began. He seemed to be feeling the same mix of hopefulness and ambivalence he’d experienced in the Death Yurt. He wanted to know if they’d thought through the implications of catering to what, essentially, is our narcissism. Fundamentally, Miller’s work is about helping people let go of that fierce attachment to the self — the urge to hang on to it at all costs. Was Gaffney’s team finding they could tap into that impulse in a purely positive way? “Is there something good in that compulsion?” he asked.
Burchell seemed taken aback by the question. They hadn’t launched the app yet, not even in beta. “At this point,” she said, “we just have hunches.”
By the end of the summer, After I Go was effectively dead.
There had been remarkable progress before then, however. Gaffney’s vision of the app had sharpened. What they were building, he realized, was a “private social network,” a lockbox where families could collaboratively collect and curate their memories. It was as much a place for living people as for dead ones. Just as sites like Ancestry.com allowed people to discover the identities of their ancestors, he told me, uploading material to Gaffney’s product would allow people to one day discover the stories of their ancestors. All the functionality of the app — they had renamed it Keeps by this point — started to snap into place around that insight; it felt full of promise. But even as Keeps started humming along conceptually, Gaffney’s belief in it was crumbling.
For one thing, there was uncertainty about how Keeps could ever be monetized. And it was proving impossible to hire the prototypical gang of slavish, single-minded twenty-something coders to work for the company. (Young people, it turned out, weren’t enthusiastic about building a digital lockbox for baby boomers to stuff their memories into; unlike apps that called you a car or delivered food to your door at 2 a.m., its mission was totally unrelatable.) Meanwhile, Gaffney was realizing it could take another year of development, maybe more, to build this new, sprawling incarnation of the app he was imagining — and that he would need to raise the money to fund that process. He told me, “I started to feel like I’d probably feel miserable trying to make that work, rather than feeling confident that we would make it work.”
Then, just as all these unnerving roadblocks came into view, Gaffney was offered a job as senior vice president of information technology at Home Depot in Atlanta. He took it, putting Keeps on hold indefinitely. And by September, there he was: smiling on Home Depot’s senior-leadership web page, wearing one of those orange aprons over his dress shirt.
“You can imagine how disappointed people here are,” one Ideo staffer told me when I first heard the news. Paul Bennett had been imagining a massive cultural shift and had invested at least a share of that ambition in Gaffney’s app. But for Gaffney, closing down Keeps had been a simple, unemotional calculation: He’d sized up the obstacles, decided it wasn’t worth it, and walked away. He wasn’t on a quest to confront some metaphysical dilemma, after all; he was building a consumer product in Silicon Valley. Keeps was just a startup, and a seed-stage one at that. Startups collapse every day.
From a business standpoint, Keeps had arguably done everything right. The app kept pivoting, as apps must. It feverishly chased what it thought we wanted most, until satisfying those desires seemed too difficult, at which point it suddenly pivoted into oblivion.
And that trajectory felt familiar. It’s hard for any of us to face down what’s difficult, frightening, or fragile in life, no matter how earnestly we may want to internalize and reimagine it. Gradually, we get distracted; we drift away from what we suspect might really matter.
Bennett hoped the app could lead us out of that problem. And it might have. It did, however, wind up illustrating the problem exquisitely.
Bennett moved on quickly. He was proud of the work Ideo did for Paul Gaffney and harbored no hard feelings. “Paul had other things he wanted to do,” Bennett told me. “The lesson was, you can’t just go into death lightly.”
That fall and winter, Bennett continued to proselytize about death and design. He talked to Ideo’s health care clients. He talked to philanthropists. He spoke at the launch event for a “healthtech incubator” in Chicago, for a crowd of 200 people. He talked to a “mortician in Los Angeles who wants to do groovy, Six Feet Under rock ’n’ roll funerals” and to a visual artist who’d designed a bodysuit made of fungi as an alternative means of burial. (“You become this organic sculpture at the end!” Bennett explained.) For the most part, these conversations were casual, but in January Bennett told me his goal for 2015 was to convert several of them into actual business propositions. Already he’d landed what might have been his ideal client all along: BJ Miller and the Zen Hospice Project.
Zen Hospice had hired Ideo for the better part of a year to work on several ambitious fronts at once. Miller told me Ideo would first help them “better articulate ourselves to ourselves” — zero in on what makes Zen Hospice’s philosophy and style of care valuable, and enhance it even further. A team of designers was already prototyping ways to improve the experience of residents and staff at Zen Hospice, including dreaming up new, more imaginative physical spaces designed specifically for dying. Then Ideo would help Zen Hospice to step into the public sphere as a potential model for reforming end-of-life care. Zen Hospice wanted to enlarge the public’s appreciation for how much more meaningful death could be. It wanted to build a coalition of similarly minded palliative-care workers and organizations, lobby for more enlightened health care policies, and get insurers to cover care at facilities like its Guest House, laying the economic groundwork for more of them to arise. “I think,” Miller told me modestly, “we’re interested in gestating something like a movement.”
By mid-January, the company had dispatched two researchers to the Guest House, where they’d spend two weeks observing and interviewing staff and volunteers and speaking with families of former residents. Zen Hospice was a small, bootstrapping organization that had never had the luxury of stepping back and codifying its organizational identity, much less a strategy for explaining its mission to outsiders. And so the two women from Ideo — an anthropologist and a “business designer” — were working up an ethnography of the place, allowing Ideo to key into the essence of Zen Hospice and then build out its brand. Dana Cho, an Ideo partner who oversaw the research, told me it’s always a challenge to hew through the stale vernacular that builds up inside any field and get people to loosen up and truly reflect on the work they do every day. And so the researchers came armed with props. In one exercise, Guest House staffers were shown pictures of celebrities — Julia Roberts, Oprah, Dame Judi Dench — and asked to describe what qualities Zen Hospice shared with each.
Ideo, meanwhile, had encouraged Miller to reach out to ted, and he was soon invited to speak on the final day of the ted conference in Vancouver in March. This was a tremendous opportunity: Bennett and Miller both sensed that the scattered but intensifying conversation about death in the culture was searching for some center of gravity. To become a genuine movement, it needed some stake to wrap around and grow — an ambassador like Miller, or an organization like Zen Hospice, or even an entire community, like San Francisco. “San Francisco feels like a very logical place to me for death to be normed,” Bennett told me. “It’s a place where radicalism was born. Why can’t the radicalism of death be something we help build here?” It’s a clumsy analogy, maybe, but it was easy to imagine Zen Hospice emerging as a kind of Chez Panisse of death, and Miller as death’s Alice Waters.
The firm’s partnership with Paul Gaffney had fizzled because Gaffney’s startup was a business with no ideological center. He wasn’t married to any particular idea; as Gaffney once told me, he was only “married to delivering real value.” Miller, on the other hand, was delivering compassion. His whole life seemed to cling to a certain hard-to-articulate ideal — a determination since his accident, as he put it, to live a full life and stay rooted in real things. Even as he opened his organization to Ideo’s efforts, in fact, he felt conflicted about being cast as a spokesman. He still considered himself a relative newcomer to palliative care and was too introspective, and too humble, to crave any celebrity. In short, what made him reticent was his integrity. It was also what convinced Bennett this could work
An encouraging push and pull seemed to have developed between the two men. A year earlier, Bennett’s crusade against death seemed to be motivated entirely by his frustration with the way his father died. But over time it was evolving into something more nuanced, inclusive, and humane. When I asked what Bennett hoped to accomplish with Zen Hospice, he told me, simply: “Best-case scenario is that more people in more places talk about death in a design-rich way.” Miller, meanwhile, confessed he’d previously dismissed branding as “some kind of trickery,” but that since starting work with Ideo, he had begun “to appreciate it as its own craft” — a clarifying process, and a tool for doing good. He was fine-tuning his ted talk, committing himself to his place on that stage.
In mid-February, Miller and a few of his board members arrived at Ideo’s San Francisco office for the same species of strategy session that Bennett had held to launch the work with After I Go. The tone of this meeting was much less rambunctious, though, and it was held in a smaller, more minimalist room around a loosely arranged circle of bare metal chairs. (I noticed no one used the word convening, either; everyone just called it a workshop.) Wooden boxes of Sharpies and brightly colored Post-its waited on a table at the back of the room. This time, it felt like something might stick
Taboos around death and dying are increasing the risk of elderly patients “on their dying journey” being subjected to unwanted and invasive medical procedures against their wishes, experts say.
Associate Professor Magnolia Cardona, from the Gold Coast’s Bond University, has led a PhD study into the use of rapid response system treatments on elderly hospital patients nearing end of life.
Professor Cardona said the research, published in the Joint Commission Journal on Quality and Public Safety, studied the files of more than 700 patients who received calls for medical emergency teams during hospitalisation at a large Sydney teaching hospital.
A medical emergency team usually consists of two or three specialists from the intensive care unit focused on maintaining life when a patient is in a hospital ward.
The research further focused on patients aged 80 and over, and found that 40 per cent were subjected to invasive procedures such as intubation, intensive monitoring, intravenous medications, transplants and resuscitation attempts.
Ten per cent of those patients already had medical orders in place limiting treatment, or requesting do-not-resuscitate.
“Those orders … are usually issued by their doctors in consultation with families,” Professor Cardona said.
Professor Cardona said the research showed the conflict between increasingly rapid medical advances, public perception of the capabilities of medical experts to revive or prolong life, and the emotive issue of death.
The findings were similar to those of 2017 studies conducted in Europe, but Professor Cardona said the Australian researchers had expected to find a smaller percentage of such incidents.
The research found that elderly patients in their last year of life were frequent users of ambulance and hospital services, including intensive care units, and that health professionals often felt under pressure to administer “aggressive” treatments.
“Health professionals do not always fully discuss a prognosis with families, or may lack the confidence to discuss patients’ preferences for care and treatment at the end of life,” the research said.
“They may decide to continue intensive treatment based on concerns about the family’s legal or emotional reactions, or in an attempt to avoid an in-hospital death, generally perceived as a ‘failure’.”
“Often these frequently heroic medical interventions do not improve patient survival and instead prolong suffering and adversely affect the quality of death.”
The study found that while patients under 80 years of age may benefit from such aggressive techniques, patients over 80 were less likely to benefit.
Professor Cardona also said it was critical that families and elderly people, or people with terminal illnesses, had open conversations about the decisions ahead, and wrote on paper their personal wishes, or appointed someone trusted as their medical representative.
Due to techniques such as CPR being treated as a cure-all on television shows and movies, Professor Cardona said the public often had some misconceptions about the safety and appropriateness of such techniques, particularly for elderly people.
She said the research would hopefully encourage both families and medical professionals to have fresh conversations about patient needs and values, and ensure the wishes of elderly patients were respected as they neared the end of life.
Professor Cardona said she hoped medical professionals could also think critically about the “do no harm” principle when faced with patients facing death of natural causes.
“The conclusion of the study that perhaps clinicians need to take a step back when they identify these flags of imminent death and offer a different alternative of management,” she said.
“That is the pathway of care of comfort care, and that includes giving the patient pain relief, other symptom control, psychosocial support and grief counselling for the families.
“And all of these of course preceded by an honest conversation with the patient and family about the poor prognosis, the inevitability of death and the fact that not every death should be considered a failure.
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.
According to the American Massage Therapy Association (AMTA), massage therapy was a $16 billion industry in the country in 2017 — more than twice the revenues of a decade earlier.
“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.”
Massage therapist Theresa J. Herman of Allina Health’s hospice program out of Minneapolis has observed a similar progression.
“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.”
