Category: Death Education

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Living with death

Joan Pillsbury attaches the supports for the handles from the inside of the coffin during the coffin building workshop last month.

By MELINA BOURDEAU

The only guarantees in life are taxation and death, according to Benjamin Franklin. For Ellen Arrison of New Salem, that reality is literally sitting inside her living room right now — in the form of a rectangular pinewood coffin.

“I hope it has lots of coffee rings and wine stains on it before I have to use it,” said Arrison, who was one of a dozen participants who took part in a recent coffin-making workshop in Greenfield that was co-sponsored by was co-sponsored by Green Burial Massachusetts and the Funeral Consumers Alliance of Western Massachusetts. According to Arrison, an experienced hospice nurse, making a coffin “made death more real” and caused her to confront end-of-life questions — a subject that she says is taboo in western culture.

“We’re all going to die, but we don’t believe it. Part of life is appreciating the time there is,” said Arrison. Housing the coffin in her living room serves as “a conversation starter” and is a constant reminder of her own mortality. She intends to keep it there until it needs to be used for its intended purpose.

“I knew I wanted a green burial, so that’s part of it too,” Arrison said. “I live in a rural area and I’d like to be buried in my own land. I love it and I’ve spent a lot of time and energy and money — I’d like to give back to the land.”

The coffin making workshop, which was led by Joan Pillsbury of Greenfield, treasurer of Green Burial Massachusetts, a nonprofit advocacy group, cost $210 and covered about two to three hours. Participants made “quick coffins” with pine provided by carpenter Chuck Lakin of Waterville, Maine, who also provided the tools and oversaw the construction process, Pillsbury said. The workshop drew people from varied walks of life.

“Everyone’s skilled were varied. Some people had no experience with tools, some could have finished the project in an hour,” Lakin said. “I tried to explain and guide people through the process.”

Afterward, the group, like pallbearers, “made a ceremony out of carrying their coffins to their vehicles,” Lakin said.“Everyone would carry a coffin to someone’s car, then that person would drive and park. Then they would do the same thing with someone else’s coffin. It must have been a sight for someone just passing by.”

Don Joralemon, a retired Smith College anthropology professor, is keeping his coffin in the basement of his home in Conway. He said he decided to make a coffin because he “isn’t a fan of the funeral industry” and he wanted to take the burden away from his family when the time comes.

“I hope to make use of it in land in Conway,” Joralemon said. “It’s a simple process. You have to get permission from the Board of Health and there needs to be a permanent indication that there’s a grave on the property.”
He said the experience of building the coffin was wonderful and he would recommend it to anyone.

The craft of coffin making

Before making coffins, Lakin, who said he’s been a woodworker since he was 26 when he got out of the United States Navy, made a living as a librarian at Colby College. When his father was dying, Lakin said he spent the last six weeks of his life surrounded by family and loved ones. It was a very personal and moving experience, Lakin said.

“He was in his own bed with each of his family touching him when he passed,” he recalled.

After, his family called a funeral home and his father’s body was taken away.

“He was hauled away and I hated it because it had been so personal and all of a sudden he was gone,” said Lakin.

Later on, Lakin read a manual about how to take care of a loved one after they have died. The book included instruction on how to wash, present and bury someone after death. Before, Lakin noted, “I hadn’t thought of what was next.”

“That’s when I began talking about these things with people,” he continued. “Not to convince them of what to do, but to provide information so they can have the experience I wanted to have.”

He decided to try his hand at making coffins so that others wouldn’t experience the emptiness that he felt. These days, Lakin says he makes between three and five coffins a year and uses the money he makes to travel to events throughout Maine and talk about the options people have funerals.

“People have no idea they have as many options as they do,” Lakin said.

He met Pillsbury at one of these events, the annual Funeral Consumers of Maine, and agreed to hold the coffin-making workshop. If there was enough interest, Lakin says he’d be willing to put on another workshop in the future.

A healing endeavor

For Lakin and the workshop participants, building the coffins was a way of confronting their mortality head-on. According to Lakin, Americans are proficient at ignoring the reality that they are going to die someday.

“You have to recognize and admit it is going to happen,” Lakin said. “It’s a natural part of life; there’s a transition in and there’s a transition out. It happens to everyone. … Your attitude toward it and preparation makes all the difference. It turns what could be a tragedy into a spiritual experience.”

Lakin was speaking from personal experience. When his wife, Penny, died in 2017, Lakin held the funeral at their home. He said he wife was in their house for the last five weeks of her life and, for the duration of those weeks, it was like a “long party.”

“We have a good support group, and we told them to stop by anytime,” Lakin said. “Sometimes there would be 12 people in the living room.”

After her death, Lakin said that two of her best friends anointed and dressed the body. Lakin built her coffin and invited guests to come over and draw and write messages on it. Then after four days, which included a time to display the body, they held a burial ceremony followed by dinner at her favorite restaurant.

“We offered people the ability to do something physical — writing or drawing something — to help them (grieve),” said Lakin. “They were grieving and I don’t think they knew what they were going through.”

Arrison had a similar experience with a home burial as a child after a friend’s grandfather died.

“He was laid out in the living room for three days,” Arrison said, noting, “I, personally, find the idea of viewing a body when it’s presented in an artificial way macabre. It makes it seem disconnected in some way.”

Green burials and the death positive movement

The term “death positive” might seem like an oxymoron, but those who are a part of a growing movement of the same name say it’s an effort to demystify mortality in American culture.

Joralemon, the retired Smith professor who attended the workshop, covered the topic in his book titled “Mortal Dilemmas: The Troubled Landscape of Death in America.” Americans have made death into a taboo subject, he says. But it hasn’t always been that way.

“It didn’t use to be so bad. Deaths would happen in the home. The body would be washed, coffins would be made by a carpenter. It wasn’t a surprise or taboo,” Joralemon said. “Then the profession of funeral director was made when more people were dying in hospitals.”

In contrast to culture’s perspectives on death, he said it’s imperative that people confront their own mortality.

“Life is a transformation and death is part of it,” Joralemon said. “Bit by bit, hopefully, we can start to recover the comfort with death and celebrate the moments before that.”

Along with the workshop, Arrison noted that her experience as a nurse has helped normalize the idea of death.

“I did hospice care for some time and I’ve been with people in the process of dying,” Arrison said. “It was valuable and a privilege. It also makes the inevitability (of death) more real. It’s familiar when it’s happening to someone else. I think that the experience is not difficult or frightening, it’s interesting and curious.”

“You get a health care proxy, a will, build your coffin,” Arrison said. “These activities take some of the dread out of it. It normalizes it and you appreciate the time you have — it’s a procrastination deterrent.”

More than preparation for the end of her life, knowing that she’s going to die someday “softens my heart,” Arrison said. “I know that every person is going to die, too. It enhances the experience of life. I have a more positive perspective. It’s actually life-affirming.”

Lakin said he learned about the term “death positive” from Caitlin Doughty, a mortician and funeral home director in Los Angeles, California, who made videos answering questions about death and dying.

“She started by answering people’s basic questions about death, then she ran out of common questions and had to look for topics,” Lakin said. “I found it informative and entertaining because she has a sarcastic sense of humor. I don’t think she coined the term ‘death positive,’ but I think she popularized it.”

He said the death positive movement coincides with a similar trend called the “green burial movement.” Both stress a more personal quality to end-of-life care.

Green Burial Massachusetts is a grassroots organization that educates people about green burials — where a person is not embalmed and put into a coffin or shroud that will biodegrade along with the body. The person is buried about 3 ½ feet in the ground, where aerobic decomposition can occur.

“A burial will happen on a piece of land 3 ½ feet under the ground, where the person isn’t embalmed and there’s no concrete,” Lakin said. “Everything is biodegradable — the person can be buried in a shroud, a coffin, a cardboard box. They also typically use stone from the area as monuments, engraved with the names and dates.”

Joralemon said his philosophies align with the green burial movement because “this is what we did for millennia and there’s no reason not to set aside land for people who would like a green burial.”

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3 Benefits Of Thinking About Your Mortality At Least Once A Day

By Shoshana Ungerleider, M.D.

As a culture, Americans—more often than not—have a tendency to avoid thinking and talking about death and dying. Yet pondering our mortality can have a profound impact on our lives.

Our health care system is set up with a single, default pathway for all medical care: aggressive, invasive treatment, no matter how old or how sick you are. For some people, this makes perfect sense and can save lives. For others, a different approach to care is required. But it starts with having a relationship with our own mortality and reflecting on what matters most in our own lives. I have seen far too many people suffer by receiving treatment that is not in line with their goals and values.

In our modern era of fast-paced life, constant digital connectedness, and a culture striving to be “doing” all the time, it’s easy to get caught up in things that don’t matter. If we can reflect on the bigger picture in life, the preciousness of each moment, we can more easily let go of things that aren’t important. I believe there are three key benefits to thinking about our mortality at least once a day:

1. You’ll be motivated to leave a legacy.

Ask yourself, what do you want to leave behind? The idea of legacy awareness is a way to connect with our own mortality as it relates to our work, loved ones, and creative endeavors. If we think about legacy as a means to transcend death, we may be more likely to invest in our health and personal development throughout life. 

Artists, for example, live on long after they’re gone thanks to their creative legacy. That’s just one way of forming a legacy. Whether you are creating art, giving back to your community, raising a family, or making a positive impact on the lives of others, these are all powerful ways to leave a legacy for generations to come.

2. Life will instantly feel more precious.

Too much of a good thing decreases its value. Life is precious. It’s also temporary. Even when you’re young and healthy, your life could end unexpectedly at any time. Recognizing that life is fleeting helps us find joy and meaning in the small things—sunset and sunrise, a smile on your child’s face, a tree in the park—that sometimes get lost in the day-to-day. The people in your life can take on a new value because we realize that their lives are also temporary.

3. You’ll learn not to sweat the small stuff.

Thinking about our mortality can serve as inspiration to think more holistically about what it means to live our best life. In other words, it can move us to exercise and eat well because we only get one body. And at the same time, it’s an invaluable reminder that we only get one life, and we better enjoy it. So many of us are on a quest to find balance in our lives and define our own priorities. Remembering that we have this one life to live can help when weighing where we want to put our energy and attention.

Countless psychological studies have shown that a recognition of our own eventual ending can allow us to live a richer life—one filled with gratitude, presence of mind, and happiness. As you go through the checklist of factors contributing to your overall well-being—getting quality sleep, eating healthy food, exercising regularly, and sustaining meaningful relationships—make sure that forming a relationship with your own mortality is high on the list.

No one knew how important this practice was better than Apple’s Steve Jobs who, during his 2005 commencement speech at Stanford University, said, “Almost everything—all external expectations, all pride, all fear of embarrassment or failure—these things just fall away in the face of death, leaving only what is truly important.”

If contemplating your mortality triggers fear, consider this.

Does thinking about our own death trigger fear? According to the 2017 Survey of American Fears conducted by Chapman University, 20.3% of Americans are “afraid” or “very afraid” of dying. While for some, fear of death is healthy as it makes us more cautious (such as wearing seat belts and minimizing high-risk behaviors), some people may also have an unhealthy fear of dying, which interferes with their daily life.

Psychologist and spirituality expert Stephen Taylor looked at those who lost loved ones, and many tend to have a more accepting attitude toward death. This may result from “post-traumatic growth,” or personal growth from trauma. Others suggest that much of our fear of death stems from not wanting to lose the things we’ve built up (i.e., relationships, possessions, or status). By letting go (even a little) of fierce attachments, it can allow for valuable shifts in perspective and benefits to our well-being. 

My friend and colleague, B.J. Miller, M.D., puts this in a different light. “Death is not at odds with living. You can’t get one without the other.” Whether we like it or not, death is always present. Connecting to the fact that life is defined by the fact that it will end one day will allow you to live more fully, experience deeper relationships, and provide new meaning to your days.

Next time you have the opportunity to reflect on your mortality, think about how it might enrich your life today.

Complete Article ↪HERE↩!

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Death and dying – talking to your loved ones

By Karen Kaslow

Death and dying are not common topics of family conversation in American culture. Even when a loved one is critically ill, many families struggle with how and when to share their thoughts and feelings about death and dying with each other.

Hospice workers are in a unique position to interact with families as the process of dying is experienced. I recently spoke with staff members from a couple of local hospice agencies who offered insight and perspective related to individual and family responses to death and dying.

One response that these professionals regularly encounter is a request by the family to not tell the patient that he/she is dying. Sometimes it’s the patient asking the professional to not tell the family that he/she is dying. The professional is asked to not wear a name badge that might say “hospice” on it, and not to introduce himself/herself as from a hospice organization.

Families may react in this manner for several reasons:

  • Fear that their loved one will respond to the news by “giving up”
  • Personal difficulty accepting the circumstances and a “if we don’t talk about it, then it isn’t real” belief
  • Lack of time or energy to have emotionally intense discussions due to the pressures of physical caregiving, financial concerns, job responsibilities, etc.
  • A desire to avoid an appearance of weakness or vulnerability

Although family members may believe they are protecting their loved ones from emotional stress by not talking about death, avoiding these conversations may actually create additional heartache for everyone due to an inability to pursue individual goals for care and experience closure. Even when families tried to hide the fact, in the majority of cases experienced by these hospice workers, their patients who were alert and oriented were aware that they were dying.

One nurse I spoke with identified what she referred to as “the tasks of dying.” When people are aware that the end of life is approaching, their emotional and spiritual focus may change and certain activities may have greater importance, such as:

  • Apologizing for past mistakes
  • Forgiving others for uncomfortable situations/relationships
  • Thanking family members, friends and others who are significant
  • Sharing love
  • Saying “goodbye”

The significance of these tasks was acutely demonstrated by one couple who were receiving services from this nurse. The wife was at the very end of her life, in fact, her physicians could not understand why she had not died days beforehand. Initially, the hospice team believed she was waiting for their daughter to arrive, however, she continued to cling to life despite the daughter’s presence.

The hospice nurse finally asked the husband if he was aware of any unresolved issue for his wife, and he immediately broke down. Many years prior, he had an affair. His wife knew of the affair and they remained married, but they never spoke about it, moving forward as if it had never occurred. With encouragement from the nurse, he acknowledged this situation and requested forgiveness from his wife, and she died within 20 minutes.

How does one initiate conversations about closure and end of life goals for care? For families who are reluctant to tell a loved one that he/she is dying, a question that might be helpful is “What is the worst case scenario if you tell your loved one?”

When speaking with the individual who is dying, recognize that one important concept for those who are near the end of life is legacy. People want to know that their lives mattered. Asking “What are you most proud of?” or sharing an accomplishment of the individual that made an impression on you can open the door to deeper dialogue.

For questions that can help guide the development of goals for care, consideration should be given to not only specific medical treatments, but also how those medical treatments will influence daily life. Defining values with questions such as “What is a good death?” and “Is there something that you want to accomplish?” can help guide care decisions.

For additional reading on this topic visit: https://online.nursing.georgetown.edu/blog/talking-about-end-of-life-care.

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Death and learning to understand it

Dying is a social not a medical event. We must accept it as part of life’s narrative

“Nobody knows what dying is like. Everybody is terrified, nobody is talking about it, everybody thinks they know what it’s like, and everybody thinks it is awful.”

By June Shannon

“How people die lives on in the memory of those who live on.” – Dame Cicely Saunders,, founder of the modern hospice movement.

Do you know what dying looks like? Do you want to know?

A lot of people are afraid of death and dying, yet like birth, it is one of life’s most natural processes. We don’t talk about it, but it happens to us all, and if we are very lucky, it occurs at the end of a long and happy life.

For many who fear death it is perhaps the fear of the unknown that is most terrifying, and it is that fear that Dr Kathryn Mannix, former palliative care physician, author and full-time campaigner for better public understanding of dying, is working to ease by encouraging us all to “narrate dying”.

Speaking to The Irish Times, Dr Mannix said that after 30 years in palliative care she found she was having the same conversations with unprepared families and terrified people with terminal illnesses, whose image of dying came only from television and films which did not reflect reality. She said people generally, had no idea what the “normal, relatively predictable and usually, fairly comfortable process dying is actually like”.

She recalled meeting the adult retired sons of a father in his late 90s who was dying and none of them knew what their father’s wishes were. She described them as “panic-stricken” when asked how or where their father wished to die. A number of the sons who were in their 70s, confessed that their father had in the past tried to share his wishes for the end of his life with his sons, but they refused to discuss it and jokingly admonished him for being morbid.

“This made me realise that we can’t keep doing this to our families,” Dr Mannix said. “This is a national public health problem. In fact, it is an international public health problem that people in parts of the world that have highly developed and sophisticated and accessible to everybody medicine, have forgotten what normal dying looks like.”

Planning for death

According to Dr Mannix, nowadays the tendency in modern health systems to call an ambulance to bring everyone who is very sick and may die, to a hospital full of technology that might just save their lives, which, she acknowledged was wonderful if it worked, meant that nobody knows what normal death looks like. “So now nobody knows what dying is like. Everybody is terrified, nobody is talking about it, everybody thinks they know what it’s like, and everybody thinks it is awful. And actually, if they were less afraid, they would be able to sit down and have those conversations and plan better and die better,” she said.

Instead of putting off what may seem like a difficult conversation until it is too late, Dr Mannix suggested that we should all know more about dying and start planning for our own deaths while we are well. “We should all be thinking about how we would like our dying to be, where, who would be our companions,” she said.

She added that these plans can be tweaked with time and suggested that we should be having these conversations around any birthday that falls on the five times table after the age of 50.

Dr Mannix explained that like birth, which starts with labour pains and progresses through a predictable sequence of events, the process of dying also involves an anticipated sequence of events that are very similar from one person to the next, irrespective of what they are dying from.

“Just like every woman who has ever given birth to a baby feels she has had a particular unique experience, every midwife who has attended that woman has been through the same process that she always has. Because it’s the individual who makes it individual, it is not the process . . . every person who is dying is having their own unique, individual, personal family experience but those of us who are caring for them are seeing the same sequence of events time after time,” she said.

Steps of process

When Dr Mannix meets a patient who expresses a fear of being in pain or distressed when they die, she gently asks if they would like her to explain the process of dying to them and tells them that if they find it too distressing, they can ask her to stop at any time.

Nobody has ever asked Dr Mannix to stop.

She said that when people learn what really happens when we die, they don’t find it terrifying, on the contrary they see it as compelling and comforting.

“I tell somebody and then there is a long pause, usually when I dry my eyes . . . and then they say ‘That’s not what I was expecting, can you tell my wife that? Can you tell my dad that, can you tell my kids that?’ and, ‘That’s wonderful I want my family to know it will be a comfort’.”

By understanding the dying process, grieving families will take the comfort of witnessing their loved one experience normal, gentle dying into their bereavement with them.

Dr Mannix explained that at the end of our lives we simply get more tired and need to sleep more.

As the illness state advances and death becomes closer, the periods of being awake get less and the periods of sleep get longer. Eventually, she said there comes a time when a patient is so deeply unconscious that they cannot be woken. When they do wake up later on, they report that they had a good sleep. Therefore, Dr Mannix said we know that being unconscious is not unpleasant for people.

She explained that when a person is unconscious, medical staff can continue to give them their regular medication to help ease the symptoms of their disease, such as breathlessness or pain, via an injection or syringe pump rather than in tablet form.

“They sleep more, they are awake less. We change the route of the medicines, but it isn’t the medicines making people sleep, it’s the illness, it’s the process of dying and at the very end of people’s lives they lapse into unconsciousness,” she said.

Unconscious state

Dr Mannix explained that this unconsciousness doesn’t feel like falling asleep and the person is not aware that it is happening.

Once the person is completely unconscious the only part of the brain that still functions is that which drives breathing which then becomes completely automatic.

She explained that at this point a person’s breathing alternates between cycles of deep and shallow breathing.

She also pointed out that in this deeply unconscious state, the dying person is not aware of their vocal cords. However, when they breathe out through their vocal cords it can make a noise and family members may fear that this is the sound of their loved one groaning or sighing in distress.

The so-called “death rattle” people hear can also be explained. This too is all part of the dying process and occurs because the dying person is so unconscious that they can no longer cough or swallow to clear normal secretions like saliva or mucus from the back of their throat.

“We would normally cough or splutter or gag if anything is touching the back of our throat because it is a reflex to preserve our lives. Once you are deeply unconscious, all of those sensations are just lost and we tolerate that . . . because you are breathing, the air is going in and out, it makes that funny clicking noise that you would normally never hear in any other circumstances because, in any other circumstances people would clear their throat,” she explained.

Dr Mannix said it was important to remind families that this was automatic breathing because when someone is deeply unconscious, they cannot feel distress.

“As time goes by the breathing gets slower, there are pauses and then eventually there will be an outbreath which doesn’t seem any different to any other out breath, but there just isn’t an inbreath afterwards. It’s as gentle as that.”

“You can’t stop death from being sad. If we love people, then death is a terrible blow – it is a very great sadness. But we can stop it from being terrifying.”

According to Dr Mannix, 100 years ago we would never have spoken about childbirth in public, but we would have all known about dying and she believes it is time for lay people to reclaim death and dying.

Death bed

While Dr Mannix acknowledged that GPs, community nurses and palliative care specialists would always have a role in the dying process, to help ease symptoms and ensure that the person is as comfortable as possible, she said that dying was not a medical matter but rather a social one.

Therefore, she was appealing to medicine to “give dying back to everyone”. “People will only understand what is happening around the death bed if we narrate it,” she said.

By helping grieving families understand the dying process, this will allow them to take the comfort of witnessing their loved one experience normal, gentle dying into their bereavement with them, Dr Mannix said.

“You can’t stop it from being sad. If we love people, then death is a terrible blow – it is a very great sadness. But we can stop it from being terrifying. We can give people the knowledge that they need to be with people who are dying.”

Dr Mannix’s book With the End in Mind: Dying, Death and Wisdom in an Age of Denial was shortlisted for the 2018 Wellcome Book Prize and she is one of a number of speakers due to address the annual dotMD conference which takes place in Galway in September.

Hailed as a festival of medical curiosity and known by some as the Electric Picnic of medical conferences, dotMD is a celebration of the heart of medicine. dotMD is curated by Dr Ronan Kavanagh, consultant rheumatologist; Dr Muiris Houston, GP and medical journalist and writer; and Dr Alan Coss, consultant gastroenterologist.

The purpose of this highly popular event which, for the first time in its seven-year history is taking place outside Dublin, is to expose doctors, medical students and other healthcare professionals to the ideas taking place at the interface between medicine, the humanities and technology.

Themes included in this year’s two-day dotMD meeting in Galway on Friday, September 13th and Saturday, September 14th, include, jazz, death, art, stories and zombies.

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Is Dying at Home Overrated?

A palliative care physician struggles with the complex realities of dying at home, and the unintended consequences of making it a societal priority.

By Richard Leiter, M.D.

“If time were short, where would you want to be?”

As a palliative care physician, I regularly ask my patients, or their family members, where they want to die. The specific language I use depends on what they know, what they want to know and how they process information, but the basic premise is the same. Having asked this of hundreds of patients, I have come to expect most will tell me that they want to be at home.

But recently I have struggled with the complex realities of dying at home, and the unintended consequences of our making it a societal priority.

It is emotionally and intellectually compelling that patients should die in their own homes, surrounded by loved ones in a comfortable, familiar environment. For patients dying of end-stage disease, be it cancer, heart disease or something else, even the best hospitals are unlikely to be able to “fix” the underlying problem. We worry that people will go through expensive and potentially painful tests and interventions that have little chance of changing the ultimate outcome. And the opportunity costs are high; time waiting for a scan or procedure could be spent getting financial affairs in order or saying goodbye.

While there are still those who subscribe to the idea that excellent health care demands doing everything possible to prolong a life, many doctors and patients now prefer a less intensive approach when time is short. Rates of hospice enrollment have increased and the home has re-emerged as a place to die, not only preferred by patients and families but also heavily recommended by clinicians, especially in my field.

The system is imperfect, though. Unless a family has the significant resources necessary to hire aides or nurses, informal caregivers become responsible for nearly everything — from feeding to bathing to toileting. These tasks often get harder as the dying person weakens. In my experience, most family members want to care for their loved ones at home, but many are unaware of caregiving’s physical and emotional toll. And the length of time a patient spends in hospice care is difficult to predict, sometimes requiring caregivers to take significant time away from work or other family members.

Complicating matters, I frequently detect ambivalence in patients who tell me they want to die at home. Some are comforted by the reliability of the nursing care and easier accessibility of IV medications in the hospital. For others, dying at home may not be their top priority. Parents may want to protect their young children’s physical space from death. Similarly, one patient’s wife told me through tears that their adult son had died suddenly in their home a few years earlier; she could not bear the thought of watching her husband die in the same place.

We should not be surprised, then, that some patients who do enroll in hospice end up back in the hospital. And yet we in palliative care often view these cases as failures. We wonder what the critical gap was that led the family to call 911 or come to the emergency department. Was the patient’s pain uncontrolled? Were medications unavailable? Did the family panic? Something must have gone wrong.

I wonder, though, if we’ve adopted the wrong approach. As a doctor who regularly asks my patients where they “want” to die, I often worry about what this will look like if they choose home. I am concerned about the unacknowledged caregiving burden for families and friends. In addition, many people with advanced disease experience escalating symptoms, like pain or shortness of breath, that even the best hospices have difficulty managing in the home. In these situations, I am caught between the passionate rhetoric of my field, the spoken and unspoken wishes of my patients, and my clinical judgment. The patient in front of me always takes precedence, but my cognitive dissonance is difficult to escape.

To be sure, dying in the hospital has its own trade-offs. Though we can make more, and faster, medication adjustments, severe symptoms can be difficult to treat regardless of the setting. And as much as we try, it’s nearly impossible to alter the health care system’s usual rhythms. Overflowing hospitals often lack the flexibility to give dying patients the privacy of a single room. We cannot guarantee that they will not be woken up by the squeal of a malfunctioning IV pump or the chaos of clinicians scrambling to help another patient. Family and friends may live hundreds of miles away, preventing them from being with their loved ones at critical moments. While an inpatient hospice facility, which represents a third option, can provide hospital-level care in more of a homelike environment, Medicare and other insurance providers have set a high threshold for the few available beds. Most patients are only eligible if they are in the last few days of life or have severe, uncontrolled symptoms that would otherwise require hospitalization.

This dilemma entered my personal life earlier this year. The caregiver for my 96-year old grandmother found her slumped over and unresponsive in her wheelchair in her apartment, where she lived alone, but with the support of aides around the clock. She did not regain consciousness, and the paramedics arrived to take her to the hospital. When my uncle called to tell me what was going on, I was unsure of how to respond. My grandmother’s health and cognition had been declining over the past few months, but her quality of life was still good. In that moment, though, my clinical intuition was that she was dying. As a palliative care physician, wasn’t it now my job to protect my grandmother from spending what could be her final hours in a hospital? On the other hand, without seeing her how could I be sure that whatever was happening could not be fixed? With uncertainty and emotion clouding my judgment, I froze.

The paramedic took the phone and gently explained that he wanted to ensure my grandmother had all the care she needed, whatever the outcome. Taking her to the hospital was the right decision. The doctor in the emergency department empathically told us he thought my grandmother was dying and recommended we focus on ensuring that the short time she had left was as comfortable as possible. The nurses quietly checked on her throughout the night, looking for any signs of distress. My grandmother died the next morning — in the hospital and at peace.

The quality and consistency of end-of-life care are not where they need to be. To ensure that all people receive the same compassionate care that my grandmother did, we need to focus not only on where, but also on how they die. When we view all deaths in the hospital as failures, we risk neglecting a critical opportunity to improve the dying experience for many of our society’s sickest and most vulnerable. Clinicians across medicine should elicit and, whenever possible, honor their patients’ preferences for where they want to die. At the same time, we need to acknowledge our own uncertainties and be honest — with ourselves and our patients — about the difficult trade-offs these choices entail.

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War on words…

Cancer is a disease, not a battle

Emeritus professor Alan Bleakley and cancer patient Jacinta Elliott on the use of military metaphors, and Adrienne Betteley of Macmillan Cancer Support on end-of-life care

It is heartening to see a front-page article on the burden that the use of cancer war metaphors may place on patients (Cancer war metaphors may harm recovery, 10 August), but we should also note that such metaphors continue to place a burden on doctors and nurses, framing contemporary healthcare – dominated by medicine – as heroic, rather than pacific.

Further, it is simply wrong for the researchers that you quote to say of the relationship between martial metaphors and their impact on patients that “nobody has actually studied it”. Particularly since Sam Vaisrub’s 1977 book Medicine’s Metaphors and Susan Sontag’s 1978 polemic Illness as Metaphor, studies have isolated differing effects of a wide-ranging typology of violence metaphors on patients by age, sex and demographics. Professor Elena Semino and colleagues at the University of Lancaster have been at the forefront of such research in the UK for many years. Global research in the field is summarised in my 2017 book Thinking With Metaphors in Medicine.

To understand why war metaphors have such traction in medicine, we have to take a historical view. In 1627 the poet John Donne described how he thought he was dying from a fever that “blows up the heart”, that is a “cannon shot”. In the mid-17th century, the most famous physician in England, Thomas Sydenham, said that “disease has to be fought against, and the battle is not a battle for the sluggard”. Two centuries later, Louis Pasteur described illness as invading armies laying siege to the body that becomes a battlefield.

The phrase “war against cancer” was first used in the British Medical Journal in 1904. In 1971, Richard Nixon famously declared a “war on cancer”. No wonder that today’s patients are so readily stigmatised in the wake of centuries of martial insults. Isn’t a “hospital” supposed to be a place for “hospitality”?
Alan Bleakley
Emeritus professor of medical education and medical humanities, Plymouth University

• Cancers are as variable as the people who develop them, so I heartily endorse comments made by Martin Ledwick, Cancer Research UK’s head information nurse, about everybody needing to find their own way of talking about it.

Battling metaphors hold an implicit suggestion that patients who succumb quickly have in some way failed to fight hard enough or have somehow “given in”, and that patients like myself who survive beyond their expected prognosis are in some way “tougher”.

Your report on recent research indicates that people can be put off seeking early treatment if the type of metaphors being used make it all sound too difficult and daunting.

This is very worrying as all the research shows that the earlier symptoms are detected, the better the chance of successful treatments and quality of life post-diagnosis.

There have been major advances in cancer treatments over the last few years. Instead of using off-putting language that deters people from getting symptoms investigated, we should broadcast news of steady progress in quicker identification and consequent longer life expectancy. So no “cure” as yet, but better options for living with cancer for as long as medically sustainable.
Jacinta Elliott
York

• The ONS mortality report shows that dementia continues to be the leading single cause of death (Dementia is ‘biggest killer in England and Wales’, 7 August). But, if all cancers were grouped together then the disease would top the table.

Unfortunately, despite cancer accounting for over 145,000 deaths in 2018 (27% of the total), we know that thousands with the disease do not spend their final days as they would wish. Some are in hospital when they would rather be at home; others face insufficient pain relief, or are unaware of the choices available to them at the end of their lives.

This autumn, as NHS bodies draw up their plans for the next five years, it is critical that they set out how people at the end of life can get the truly personalised care they need.

Our hard-working NHS professionals do everything in their power to provide care and comfort at this crucial time, but there simply aren’t the numbers of staff with the right skills to have the important and compassionate conversations needed. It is vital that staff are provided with support and training so that they can prompt open discussions as early as possible and ensure people’s wishes are taken into account.

The only certainty in life is death, and we need to make sure that everyone has choice and dignity when it comes.
Adrienne Betteley
End-of-life care specialist adviser, Macmillan Cancer Support

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Washing My Boy’s Body

When a hospice counselor is called to the bedside of a child who has just died, he leads the parents through a Buddhist ritual for cleaning the body. In the process, he guides them through the fires of grief, which burn away everything but love.

Misery, 1897. Kathe Kollowitz

By Frank Ostaseski

One day, in the middle of writing a foundation grant report, I got a call from a man I didn’t know. He explained that he was the father of a 7-year-old boy who had been very ill with cancer. Some people had told him that I might be able to help him out.

I said certainly, I would be willing to help the family through their grieving process. I made some suggestions about how I might be able to support when the time was right.

The man paused. It was clear that I didn’t understand yet what was happening. He practically whispered, “No, Jamie died a half hour ago. We’d like to keep our boy at home in his bed for a little while. Can you come over now?”

Suddenly, the situation wasn’t hypothetical; it was real and staring me in the face. I had never done anything like this before. Sure, I had sat at the bedsides of people who were dying, but I had not attended the death of a young child with two grieving parents in unimaginable pain. I honestly had no idea what to do, so I let my fear and confusion arise. How could I possibly know in advance what was needed?

I arrived at the house a short while later, where the dispirited parents greeted me. They showed me to the boy’s room. Walking in, I followed my natural inclination: I went over to Jamie’s bed, leaned down, and kissed him on the forehead to say hello. The parents broke into tears, because while they had cared for him with great love and attention, nobody had touched the boy since he had died. It wasn’t their fear of his corpse that kept them away; it was their fear of the grief that touching him might unleash.

I suggested that the parents begin washing the boy’s body— something we often did at Zen Hospice Project. Bathing the dead is an ancient ritual that crosses cultures and religions. Humans have been doing it for millennia. It demonstrates our respect for those who have passed, and it is an act that helps loved ones come to terms with the reality of their loss. I felt my role in this ritual was simple: to act with minimal interference and to bear witness.

The parents gathered sage, rosemary, lavender, and sweet rose petals from their garden. They moved very slowly as they put the herbs in warm water, then collected towels and washcloths. After a few moments of silence, the mother and father began to wash their little boy. They started at the back of Jamie’s head and then moved down his back. Sometimes they would stop and tell one another a story about their son. At other times, it all became too much for the father. He would go stare out the window to gather himself. The grief filling the room felt enormous, like an entire ocean crashing upon a single shore.

The mother examined and lovingly cared for each little scratch or bruise on her son’s body. When she got to Jamie’s toes, she counted them, as she had done on the day he was born. It was both gut-wrenching and extraordinarily beautiful to watch.

From time to time, she would look over at me as I sat quietly in the corner of the room, a beseeching question filling her eyes: “Will I be able to survive? Can I do this? Can any mother live through such loss?” I would nod in encouragement for her to continue at her own pace and hand her another washcloth, trusting the process. I felt confident that she would find healing by allowing herself to be in the midst of her suffering.

It took hours for the parents to wash their son. When the mother finally got to the face of her child, which she had saved for last, she embraced him with incredible tenderness, her eyes pure reflections of her love and sorrow. She had not only turned toward her suffering; she had entered into it completely. As she did, the fierce fire of her love began to melt the contraction of fear around her heart. It was such an intimate moment. There was no separation between mother and child. Perhaps it was like his birth, when they had the experience of being psychologically one.

After the bathing ritual was complete, the parents dressed Jamie in his favorite Mickey Mouse pajamas. His brothers and sister came into the room, making a mobile out of the model planes and other flying objects he had collected, and they hung it over his bed.

Each one of them had faced unbelievable pain. There was no more pretense or denial. They had been able to find some healing in each other’s care and perhaps in opening to the essential truth that death is an integral, natural part of life.

Can you imagine yourself living through what these parents did? “No,” many of you will say, “I cannot.” Losing a child is most people’s worst nightmare. I couldn’t endure it. I couldn’t bear it, you may think. But the hard truth is, terrible things happen in life that we can’t control, and somehow we do bear them. We bear witness to them. When we do so with the fullness of our bodies, minds, and hearts, often a loving action emerges.

And sometimes they act with enormous compassion toward others who have suffered similarly or who may yet in times to come.

One of the most stunning images of this that I can recall came after the major earthquake and tsunami disabled the Fukushima nuclear power plant in Japan. A photo in the newspaper revealed a dozen elderly Japanese men gathered humbly, lunch baskets in hand, standing in a line outside the plant’s gates. The reporter explained that they were offering to take the place of younger workers inside who were attempting to contain the radiation-contaminated plant. In total, more than five hundred seniors volunteered.

One of the group’s organizers said, “My generation, the old generation, promoted the nuclear plants. If we don’t take responsibility, who will? When we were younger, we never thought of death. But death becomes familiar as we get older. We have a feeling that death is waiting for us. This doesn’t mean I want to die. But we become less afraid of death as we get older.”

Suffering is our common ground. Trying to evade suffering by pretending that things are solid and permanent may give us a temporary sense of control. But this is a painful illusion, because life’s conditions are fleeting and impermanent.

We can make a different choice. We can interrupt our habits of resistance that harden us and leave us resentful and afraid. We can soften around our aversion.

We can see the way things actually are and act accordingly, with wise discernment and love.

The Thai meditation master Ajahn Chah once motioned to a glass at his side. “Do you see this glass?” he asked. “I love this glass. It holds the water admirably. When the sun shines on it, it reflects the light beautifully. When I tap it, it has a lovely ring. Yet for me, this glass is already broken. When the wind knocks it over or my elbow knocks it off the shelf and it falls to the ground and shatters, I say, ‘Of course.’ But when I understand that this glass is already broken, every minute with it is precious.”

After being with Jamie’s parents as they bathed their son, I returned home, and I held my own child very close. Gabe was also 7 years old at the time. I saw clearly how precious he is to me, what a joy he is to have in my life. While I felt devastated by what I had witnessed, I also was able to appreciate the beauty in it.

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