Walk with me to the end

Death doulas represent a grassroots movement to change the way America dies

Edvard Munch, Death in a Sickroom.

By Caitlin Rockett

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.”

Complete Article HERE!

How This Doctor Is Bringing Human Connection Back to End-of-Life Care

Dr. Shoshana Ungerleider

By Rimma Boshernitsan

Dr. Shoshana Ungerleider is bringing together a cross-disciplinary set of minds to reimagine what dying in America looks like today starting with palliative care in the United States. After years of seeing how the system provides less-than-desirable services to patients and their families, Ungerleider extended her career as an internist at one of the best teaching hospitals in the country to focus on awakening a global movement with the End Well Foundation.

Born just outside of Eugene, Oregon, Ungerleider never thought she would become a doctor. Majoring in science with a focus on marine biology, she very quickly realized that she preferred interacting with humans and took her career in a different direction. It was a chance internship at Duke University that sparked an interest in medicine. With the support of her mentors, she applied and completed medical school at Oregon Health & Science University in Portland.“I always knew that I wanted to be in service of other people in some way, I just didn’t know what that looked like,” Ungerleider said. “It was always very important to me. “I realized medicine was the path for me.”

Ungerleider completed her residency program at California Pacific Medical Center in San Francisco. After a rotation in the ICU, she realized that most of her patients were older, with chronic diseases and in a state that was not going to drastically improve. “Nothing that we were going to do for them was actually going to help them,” Ungerleider realized. “We were not turning back the clock on their age, we were not going to be able to cure their cancer that was widely metastatic, and we couldn’t give them a new heart.” Many of her patients were suffering and dying, hidden away from people they love, she found. And they and their families were not provided with options or a conversation about what was going on. “I realized that it’s sort of the default thing that we do in this country—no matter how old you are, no matter how sick you are, you will be admitted to an ICU, even if it won’t help you,” she said. She soon asked herself, What is the bigger picture? What is it that doctors are meant to do for patients, and are we doing that for everyone we serve?

Per a 2016 study in the Journal for American Medical Association, a peer-reviewed medical journal, 70 percent of doctors surveyed in the U.S. said they have not been trained to have difficult conversations with patients. “If communication is one of the biggest parts of the job, then how is it possible that the least amount of time is spent on exactly that,” pondered Ungerleider.

She discovered that there was a hugely under-recognized, epidemic happening in hospitals for patients to truly have human-centered care, with a lot of that being directed toward serious illness and end-of-life conversations. And, this is especially important when doctors are trained. “As physicians in training, we are often the very first people to see a patient when they come to the hospital. It’s actually possible to change the course of their treatment trajectory if physicians know how to have conversations with patients and their families based on their goals and understanding what it is that they value in their lives. Much of that doesn’t get translated into the care that they receive, and we must do something about that,” said Ungerleider.

In shifting her own conversations with patients, Ungerleider started a clinical program to train residents and medical students to have competence in palliative medicine starting with communications training. Palliative care is a field of medicine that is fairly new, a multidisciplinary, approach to medical care that is focused on quality of life for patients and their families facing terminal illnesses. Providing necessary support and comfort beyond hospice, palliative care can be used at any time during the course of an illness.

Ungerleider’s work with the hospital’s foundation inspired the inception of her own foundation, focused on bringing awareness and public engagement to the systemic change that is necessary for people to live life more fully to the very end. “I was interested in creating a shift in how society motivates people to have conversations about this topic with people they love, so that if they do end up in a situation where they are receiving medical care, the care that they get is the care that they want. I want everyone to understand their options, and how to make decisions in line with their goals and the values of how they live their lives. That, to me, is good medicine, whether we’re talking about diabetes care and high blood pressure or about the end-of-life experience,” she said. In 2014 , Ungerleider started the Ungerleider Palliative Care Education Fund to do exactly that. With the mission to further palliative care education at every level. In collaboration with the California Pacific Medical Center Foundation, the Ungerleider Fund initiated a comprehensive education program to enhance medical training around advanced illness and end of life care, physician communication and wellness for healthcare providers at Sutter Health’s California Pacific Medical Center. The foundation has financed the production of two films, both acquired by Netflix—End Game (with directors Rob Epstein and Jeffrey Friedman) and Academy-Award nominated Extremis (by director Dan Krauss) both —with the goal of educating and expanding the thinking around decision making, palliative and end-of-life care.

When asked about how her foundation became a reality, Ungerleider notes she would go to conferences around the country and meet exceptional people working in palliative care, across policy, hospice or caregiving. “They were and have been doing incredible work, yet it was always the same people. I noticed that we do a lot of ‘preaching to the choir’ in this field and don’t get outside of our traditional spheres of influence to engage other people in a conversation,” she said.

To expand the conversation beyond the medical field, in 2017, Ungerleider launched a one-day, TED-style symposium, End Well, with this very thought in mind. She asked herself, How do we create an opportunity to bring together not just those practicing palliative care but include a cross-disciplinary set of professionals working to amplify this topic through their individual work? Creating a discourse of this nature has opened up unique opportunities to bring the public and private sectors together to more deeply understand the opportunities that exist for patients.

“I feel so strongly that death and dying are not just a medical issue but a purely human issue that behooves all of us to get invested in this conversation,” Ungerleider said. ”My goal with End Well is to bring new voices into the fold, to hear from entrepreneurs who think differently about this space, to hear from patients, caregivers, artists, educators, and my fellow colleagues in medicine, too. We need to lower the barriers of entry to this conversation because we have a wide-open space to innovate new solutions: We have 10,000 baby boomers turning 65 every day in this country. It’s a looming crisis.”

As Ungerleider gears up for this year’s End Well Symposium on December 6th in San Francisco, she attributes the following elements to her success:

Listen first: “Within the first 60 seconds of meeting a patient, I can often learn more by simply listening than by talking. For patients to be engaged in their own health, they must understand their diagnosis, treatment and potential outcomes. This starts with listening to them,” she said.

Focus, focus, focus: “One of the things that my husband has instilled in me is being very goal-oriented, so I’m hyper-focused around palliative care, hospice, end-of-life—that is all that I do. My mission is to have conversations about mortality be so commonplace that I don’t need to do this work anymore, that palliative care can go away as a field because how all medicine is practiced is good medicine. That is my end goal and everything I do; I align with that goal,” she said.

Be open to opportunities: “I never imagined I’d end up running a foundation, executive producing films and starting international conferences. The opportunity to be part of the films was unexpected and it’s because I remain open and curious about how new opportunities play into advocating the work I’m doing.” Ungerleider said.

Complete Article HERE!

Ten Facts About Medical Aid in Dying

By David R. Grube, MD

Introduction

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.

Complete Article HERE!

The language of living and dying

When it comes to caring for people with cancer, how clinicians talk about palliative care can make a huge difference to patients and their families

For many, palliative care means spending more time at home, rather than in hospital.

By Jennifer Philip

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.

Complete Article HERE!

Death, Redesigned

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

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The Comfort of Hospice Massage at Life’s End

Hospice massage was once distrusted, but now helps thousands die comfortably

Licensed massage therapist Cindy Spence providing a massage for a 41-year-old breast cancer patient, five weeks prior to death.

By Bill Ward

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.”

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‘Why I won’t be putting off death cleaning’

Is it better to declutter and move to something smaller long before the inevitable happens?

By Rebecca Huntley

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.

“No candlesticks, just memories.”

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.

Death cleaning helps those family and friends we leave behind, but it’s emotionally draining and physically exhausting.

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.

No candlesticks, just memories.

Complete Article HERE!