Category: Death Education

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Dramas discuss what makes a good death in the age of Covid

By Alex Spencer

The coronavirus pandemic has forced millions of us to come face to face with death in ways that we never imagined. Whether we’ve experienced personal losses, attended virtual funerals, or watched death tolls creeping up on the news, we are all confronting the pain of illness, death and grief and we’re having different kinds of conversation than we did before.

Researchers from the A Good Death? project at Cambridge University’s English faculty have teamed up with Menagerie Theatre Company to create three original audio plays, released online for free today (Wednesday) to help us to think and talk about this new reality. Written and recorded during lockdown by Menagerie actors, Seven Arguments with Grief, End of Life Care – A Ghost Story and A Look, A Wave are short 15-minute plays that provide glimpses into the thoughts and feelings of a bereaved mother and a hospital doctor, and reflect on the final farewell of the deathbed goodbye.

Written by Patrick Morris, co-artistic director of Menagerie, and inspired by the research of Dr Laura Davies into the history of writing about death, these plays don’t try to provide answers about how to handle what we’re all experiencing, in different ways, right now. What they do is capture personal stories and aim to be authentic to how hard life, death and loss can be.

Laura told the Cambridge Independent: “We have been running them since 2018 to improve conversations about death and dying using literature and the arts that means we run public events such as workshops for bereavement counsellors, people who work in palliative care, hospice workers and we use literature, museum objects and artworks to help people talk about death and dying.

“During the pandemic we built on an existing connection with Menagerie Theatre at the Cambridge Junction to think about how we could make some audio drama that people could listen to at home or on headphones that hopes, in a non-direct way, to help people to think about death and dying in a different way to the headlines of the death toll creeping up.

“We wanted people to think about what they believe and how they are feeling and what their experiences are. Right now we are all being forced to confront a reality that is universal but in a new way. Our ancestors would have been closer to death with it being more common for people to die in the home – child mortality rates were higher and plague and disease that couldn’t be controlled were more usual. We have been protected in the west from that sense that things are beyond our control and that we are quite vulnerable as human beings. You can’t avoid death and dying at the moment and many people are reporting feeling anxious about it, but of course you can’t hide.

“It’s important there’s a way to think about these ideas and listen to a story that can prompt reflections without increasing fear and anxiety. The work of literature and drama is to stimulate emotions,but with a bit of distance because you know it isn’t real. Our message is that death is part of life and that the way in which individuals experience life, death and loss is complicated and unique, andthat there is not a right or wrong way to grieve or a right or wrong way to live your own life knowing it will end.

“The more you talk about it doesn’t make it more likely to happen, but it can enhance the way you live.

“Even if there are elements of death and dying we can’t control, such as where and when and how we might die, it helps to have shared your wishes with your family and to have thought about what you might wish your legacy to be. They can help you to come to terms with it.”

A Good Death? includes workshops designed for practitioners, such as bereavement counsellors and hospice workers, along with public events, creative collaborations and online resources. The project also uses literature and the arts to open up new conversations about death, dying and bereavement.

Laura added: “One of the things emerging in terms of cultural impact is the experience of complicated grief that comes from a traumatic death. Early research points to the fact we are looking at long-term consequences for people’s mental health because they may have experienced not being able to be with a loved one at the end, or only being able to attend a funeral by Zoom. And missing out on those kinds of rituals makes it harder for people to grieve. Psychologists are looking at this cohort of bereaved people and the impact it will have on them.”

Menagerie is a new writing theatre company, resident at Cambridge Junction. It aims to develop and produce new plays which engage powerfully, imaginatively and critically with the contemporary world. Its co-artistic director Patrick explained: “There are so many books about the grieving process as if it’s some kind of logical process rather than something that’s actually faltering, that stalls, that destroys some people, but makes other people. I wanted to create a space for the real difficulties of grief.”

On the value of this collaboration, Laura added: “Working with Menagerie has given me a new perspective on my research into 18th century literature. These plays turn abstract and complex ideas into personal stories, showing new angles that I’ve not noticed before. And they capture brilliantly both how similar our struggles today are to those of the past, and how every person’s response to death or loss is unique.”

The plays can be listened to on the A Good Death? project website, good-death.english.cam.ac.uk/collab , where you can also watch interviews with the researchers, writer and actors.

Complete Article ↪HERE↩!

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The big difference between palliative care and hospice care

By Gareth Mahon

The difference between palliative care and hospice care

Hospice care, on the other hand, is more specific; it is a synonym for end-of-life care. In order to receive hospice care, you’ll have to stop curative treatments.

Unlike palliative care, hospice care is short term; it begins only after a medical assessment indicates you have six months or fewer left to live. Palliative care, however, can and should begin at any stage of a life-limiting illness.

How to create an end of life care plan

If you are receiving palliative care for a terminal illness, then it’s important to create an end of life care plan that describes the kind of care you want. To create your plan, consider these questions:

  • Where do you want to be for this stage of life? You can receive palliative care at home, in hospital, in a hospice, or in an aged care facility. The best location for you will depend on your needs, what type of care you want, what equipment and support is needed, and your goals.
  • Who do you want to provide care? Do you want your GP to provide most of your care? Do you have specialist health professionals such as an oncologist or physiotherapist? Do you want to receive care from a palliative care team that includes a social worker, a psychologist, or other specialists?
  • Who do you want to make decisions if you’re not able to? You can designate a loved one to make decisions about your care on your behalf if that becomes necessary.

Benefits of palliative care

Palliative care can significantly improve your quality of life. Even if you’re receiving it as part of end-of-life care, palliative care helps you focus on the life you’re experiencing now. The goal of palliative care is to make your life now as full and comfortable as possible.

One of the key goals of palliative care is to reduce the physical symptoms of your disease. This treatment focuses on alleviating symptoms such as pain, nausea and fatigue. Reducing your symptoms can reduce the suffering caused by disease, making you more comfortable and enabling you to enjoy activities and time with your loved ones.

Palliative care also provides spiritual and social support. This could mean providing you with counseling and care from a clergy member of your religion. It could also mean grief counseling and therapy for your and your loved ones, or care from a social worker who provides you with resources and counseling. In addition to religious support, you can receive care such as narrative therapy, counseling and education.

Finally, palliative care offers holistic support for your family and loved ones. It includes both physical and psychological support. Care for your family could include grief counseling and connection with community resources.

How do I get palliative care?

You qualify for palliative care if you have a serious, incurable illness. It does not have to be a life-threatening illness, but it does have to be an illness that significantly limits your quality of life for you to be eligible for palliative care.

To receive care, you simply need a referral from a healthcare provider. Usually this is your GP, but it can be a specialist for your illness or any healthcare professional who knows about your condition and can recommend care. If you think you may be eligible, you can ask your doctor to refer you.

Most palliative care is covered by Medicare at no cost to you. However, you might have to pay fees for some services. If you choose to receive care at home, then you might need to pay for specialized equipment or nursing staff. Some complementary palliative treatments or therapies may only be available by paying for them privately. If you choose to go to a private hospital or to use a respite service, these may also come with associated fees.

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Race, education, gender may influence some divergent views about death

Danvers resident John Barbieri looks over a collage of photos of his late wife, Ann “Peachie” Barbieri. They were married for more than 60 years.

By Mark Arsenault and Liz Kowalczyk

A Boston Globe-Suffolk University poll late last year shows that, for the most part, Massachusetts residents share widespread agreement on issues related to the difficult subject of death.

They say society would be better off if end-of-life issues were discussed more openly and believe terminally ill patients should have more options to choose when and how to die. A sizable majority say they would prefer to die at home, and many men and women have first-hand experience with hospice, according to the poll of some 500 residents across the state.

But some major — and subtle — differences emerged along racial, education, and gender lines, a sign that physicians must address cultural attitudes and life experiences, not just medical options, to reduce inequities in end-stage medical care. The poll showed differences in the types of diseases people most dread, how religion affects views on death, and when to stop aggressive treatment at the end of life.

For example, the survey found that Black and Hispanic people are more likely than white and Asian people to say religion and spiritual beliefs guide their medical end-of-life wishes. And it found that Black people more often want to continue treatment for an incurable, debilitating disease than other groups, likely reflecting longstanding fears of under-treatment due to a history of discrimination.

The poll also found women were more likely than men to believe greater public discussion about death is a good thing and have more religious and spiritual beliefs guiding their medical decisions at the end of life. Women were also somewhat more likely to believe in the afterlife.

Differences among groups also emerged on what life-threatening disease they most feared. Black and Hispanic people identified cancer above all, while white and Asian respondents identified Alzheimer’s and dementia as the condition they most dreaded. Similar differences were found along educational lines.

Complete Article ↪HERE↩!

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The Final Chapter

By Melissa Red Hoffman, MD

The first time I saw a death certificate, I was 19 years old. The cause of death was listed as “laceration of the trachea and esophagus, also laceration of heart and lungs with fractures and bleeding caused by two gun shots in the neck and chest.” The death certificate belonged to my father, killed by a terrorist while on a business trip in Cairo. By the time I laid eyes on it, the certificate only served to confirm a very painful truth: My father’s story had come to a very tragic and bloody end.

It’s 26 years later and I’ve managed to use this tragedy to inspire a career focused on both trauma and hospice and palliative medicine. In the simplest terms, I spend half my time trying to save lives and the other half trying to ensure a good death. For me, it works. But there’s no denying that my father’s legacy is always lingering in the background, whether I am in the trauma bay or at a patient’s bedside. The cause of death imprinted on that death certificate, along with the fear, pain and suffering that I assume it caused my dad, and the grief, sadness and never-ending longing that it evoked within me and many members of my family, is never far from my mind. And for reasons that I don’t fully understand, I have reread that death certificate more times than I can count.

That being said, the first time I was actually handed a death certificate to complete, I was well into my yearlong hospice and palliative medicine fellowship, and my only response was, “What am I supposed to do with this?” Despite 10 years of training including medical school, general surgery residency and critical care fellowship, I had never seen this form in the hospital, much less received any guidance on how to complete it. My hospice attending provided some cursory instruction and assured me she was available if I had questions, and that was that.

Since then, I’ve filled out more than 100 of these forms; when I work as a hospice attending, it’s not unusual for me to fill out a half-dozen death certificates during an eight-hour shift. The CDC publishes a free guide ( www.cdc.gov/ nchs/ data/ misc/ hb_me.pdf) that has proven to be helpful to me as I’ve attempted to correctly determine and report the cause of death. State medical boards stress that physicians should exercise their best clinical judgment when filling out the form and that lawsuits involving death certificates are exceedingly rare, but I still sometimes find it nerve-wracking to determine the exact steps that led to a patient’s ultimate demise. While completing a death certificate presents an intellectual challenge and demands a short, but not insignificant, time commitment, I have recently come to view the process as something more profound than another item on my to-do list. Because this form is required for both burial and cremation, I now regard it as both the final chapter of a patient’s life story and the first chapter of a family’s bereavement narrative.

I often think of my father when filling out these forms and it always gives me pause. When I open the medical record, I’m usually touched by the thought that I’m very likely the last physician who will ever study this information. Reading through the chart, I like to linger for a moment or two and think: Who was this patient? What did he do for work? Who did she love, and, just as importantly, who loved her? I also find myself wondering what happened. What, if anything, could we have done differently or better? Could we have caused less suffering? Provided more comfort? Consulted palliative care earlier or at all?

Last week, while I was working at the local inpatient hospice facility, a female patient, five years younger than me and recently diagnosed with metastatic cancer, died before I had the opportunity to round on her. When I went to view her body, I was struck by the stark difference between the glowing, robust woman pictured in a photo hanging above her bed and the bald, gaunt corpse lying curled up on her side. “She truly had nothing left to give,” I commented to the nurse and the chaplain as they gathered her few belongings to return to her family. As I was getting ready to leave for the day, the funeral director arrived to collect her body and asked if I had a few minutes to complete her death certificate. I knew almost nothing about this woman—she had been under my care for only a few short hours—and yet I was tasked, and blessed, with signing off on the final chapter of her life. With this last act of patient care, I was able to support her family in the first steps along their grief journey.

As a surgeon trained in hospice and palliative medicine, my personal narrative has changed from “There’s nothing more I can do” to “Let me walk with you.” Taking the time to complete a death certificate is another way for me, and all surgeons, to follow a patient’s story to the very end.

Complete Article ↪HERE↩!

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How to Die (Without Really Trying)

A conversation with the religious scholar Brook Ziporyn on Taoism, life and what might come after.

By George Yancy

This is the fifth in a series of interviews with religious scholars exploring how the major faith traditions deal with death. Today, my conversation is with Brook Ziporyn, the Mircea Eliade professor of Chinese religion, philosophy and comparative thought at the University of Chicago Divinity School. Professor Ziporyn has distinguished himself as a scholar and translator of some of the most complex philosophical texts and concepts of the Chinese religious traditions. He is also the author of several books, including “The Penumbra Unbound: The Neo-Taoist Philosophy of Guo Xiang” and “Zhuangzi: The Complete Writings,” as well as two works on Tiantai Buddhism . — George Yancy

George Yancy: For many Westerners, Taoism is somewhat familiar. Some may have had a basic exposure to Taoist thought — perhaps encountering translations of the “Tao Te Ching” or Chinese medicine or martial arts or even just popular references to the concept of yin and yang. But for those who haven’t, can you give us some basics? For example, my understanding is that Taoism can be described as both a religious system and a philosophical system. Is that correct?

Brook Ziporyn: “Taoism” (or “Daosim”) is a blanket term for the philosophy of certain classical texts, mainly from Lao-tzu’s “Tao Te Ching” and the “Zhuangzi” (also known in English as “Chuang-tzu”), but also for a number of religious traditions that adopt some of these texts while also producing many other texts, ideas and practices. This can make it difficult to say what the attitude of Taoism is on any given topic.

What they have in common is the conviction that all definite things, everything we may name and identify and everything we may desire and cherish, including our own bodies and our own lives, emerge from and are rooted in something formless and indefinite: Forms emerge from formlessness, the divided from the undivided, the named from the unnamed, concrete things from vaporous energies, even “beings” from what we’d call “nothing.”

Some forms of religious Taoism seek immortal vitality through a reconnection with this source of life, the inexhaustible energy that gave us birth. Many forms of cultivation, visualization and ritual are developed, with deities both inside and outside one’s own body, to reconnect and integrate with the primal energy in its many forms.

The philosophical Taoism of the “Tao Te Ching” seeks to remain connected to this “mother of the world,” the formless Tao (meaning “Way” or “Course”), that is seemingly the opposite of all we value, but is actually the source of all we value, as manure is to flowers, as the emptiness of a womb is to the fullness of life.

In all these forms of Taoism, there is a stress on “return to the source,” and a contrarian tendency to push in the opposite direction of the usual values and processes, focusing on the reversal and union of apparent opposites. In the “Zhuangzi,” even the definiteness of “source” is too fixed to fully accommodate the scope of universal reversal and transformation; we have instead a celebration of openness to the raucous universal process of change, the transformation of all things into each other.

Yancy: In Taoism, there is the concept of “wu-wei” (“doing nothing”). How does this concept relate to what we, as human beings, should strive for, and how is that term related to an ethical life?

Ziporyn: Wei means “doing” or “making,” but also “for a conscious, deliberate purpose.” Wu-wei thus means non-doing, implying effortlessness, non-striving, non-artificiality, non-coercion, but most centrally eschewal of conscious purpose as controller of our actions.

So in a way the idea of wu-wei implies a global reconsideration of the very premise of your question — the status and desirability of striving as such, or having any definite conscious ideals guide our lives, any definite conscious ethical guide. Wu-wei is what happens without being made to happen by a definite intention, without a plan, without an ulterior motive — the way one does the things one doesn’t have to try to do, what one is doing without noticing it, without conscious motive. Our heart beats, but we do not “do” the beating of our hearts — it just happens. Taoism says “wu-wei er wu bu-wei” — by non-doing, nothing is left undone.

Theistic traditions might suggest that what is not deliberately made or done by us is done by someone else — God — and done by design, for a purpose. Even post-theistic naturalists might still speak of the functions of things in terms of their “purpose” (“the heart pumps in order to circulate the blood and keep the body alive”). But for Taoists, only what is done by a mind with a prior intention can have a purpose, and nature isn’t like that. It does it all without anyone knowing how or why it’s done, and that’s why it works so well.

Yancy: How does Taoism conceive of the soul?

Ziporyn: Taoism has no concept of “the” soul per se; the person has many souls, or many centers of energy, which must be integrated. All are concretizations of a more primal formless continuum of energy of which they are a part, like lumps in pancake batter. These are neither perfectly discontinuous nor perfectly dissolved into oneness.

Ancient Chinese belief regarded the living person as having two souls, the “hun” and the “po,” which parted ways at death. Later religious Taoists conceived of multitudes of gods, many of whom inhabit our own bodies — multiple mini-souls within us and without us, which the practitioner endeavored to connect with and harmonize into an integral whole.

Yancy: The concept of a soul is typically integral to a conceptualization of death. How does Taoism conceive of death?

Ziporyn: In the “Zhuangzi,” there is a story about death, and a special friendship formed by humans in the face of it. Four fellows declare to each other, “Who can see nothingness as his own head, life as his own spine, and death as his own backside? Who knows the single body formed by life and death, existence and nonexistence? I will be his friend!” We go from formlessness to form — this living human body — then again to formlessness. But all three phases constitute a single entity, ever transforming from one part to another, death to life to death. Our existence when alive is only one part of it, the middle bit; the nothingness or formlessness before and after our lives are part of the same indivisible whole. Attunement to this becomes here a basis for a peculiar intimacy and fellowship among humans while they are alive, since their seemingly definite forms are joined in this continuum of formlessness.

The next story in the “Zhuangzi” gives an even deeper description of this oneness and this intimacy. Three friends declare, “‘Who can be together in their very not being together, doing some­thing for one another by doing nothing for one another? Who can climb up upon the heavens, roaming on the mists, twisting and turning round and round without limit, living their lives in mutual forgetfulness, never coming to an end?’ The three of them looked at each other and burst out laughing, feeling complete concord, and thus did they become friends.”

Here there is no more mention of the “one body” shared by all — even the idea of a fixed oneness is gone. We have only limitless transformation. And the intimacy is now an wu-wei kind of intimacy, with no conscious awareness of a goal or object: They commune with each other by forgetting each other, just as they commune with the one indivisible body of transformation by forgetting all about it, and just transforming onward endlessly. Death itself is transformation, but life is also transformation, and the change from life to death and death to life is transformation too.

Yancy: Most of us fear death. The idea of the possible finality of death is frightening. How do we, according to Taoism, best address that fear?

Ziporyn: In that story about the four fellows, one of them suddenly falls ill and faces imminent death. He muses contentedly that after he dies he will continue to be transformed by whatever creates things, even as his body and mind break apart: His left arm perhaps into a rooster, his right arm perhaps into a crossbow pellet, his buttocks into a pair of wheels, his spirit into a horse. How marvelous that will be, he muses, announcing the dawn as a rooster, hunting down game as a pellet, riding along as a horse and carriage. Another friend then falls ill, and his pal praises the greatness of the process of transformation, wondering what he’ll be made into next — a mouse’s liver? A bug’s arm? The dying man says anywhere it sends him would be all right. He compares it to a great smelter. To be a human being for a while is like being metal that has been forged into a famous sword. To insist on only ever being a human in this great furnace of transformation is to be bad metal — good metal is the kind that can be malleable, broken apart and recombined with other things, shaped into anything.

I think the best summary of this attitude to death and life, and the joy in both, is from the same chapter in “Zhuangzi”:

This human form is just something we have stumbled into, but those who have become humans take delight in it nonetheless. Now the human form during its time undergoes ten thousand transformations, never stopping for an instant — so the joys it brings must be beyond calculation! Hence the sage uses it to roam and play in that from which nothing ever escapes, where all things are maintained. Early death, old age, the beginning, the end — this allows him to see each of them as good.

Every change brings its own form of joy, if, through wu-wei, we can free ourselves of the prejudices of our prior values and goals, and let every situation deliver to us its own new form as a new good. Zhuangzi calls it “hiding the world in the world”— roaming and playing and transforming in that from which nothing ever escapes.

Yancy: So, through wu-wei, on my death bed, I should celebrate as death isn’t an ending, but another beginning, another becoming? I also assume that there is no carry over of memory. In other words, in this life, I am a philosopher, male, etc. As I continue to become — a turtle, a part of Proxima Centauri, a tree branch — will I remember having been a philosopher, male?

Ziporyn: I think your assumption is correct about that: There is no expectation of memory, at least for these more radical Taoists like Zhuangzi. This is certainly connected with the general association of wu-wei with a sort of non-knowing. In fact in the climax of the same chapter as we find the death stories just mentioned, we find the virtue of “forgetting” extolled as the highest stage of Taoist cultivation — “a dropping away of my limbs and torso, a chasing off my sensory acuity, dispersing my physical form and ousting my understanding until I am the same as the Transforming Openness. This is what I call just sitting and forgetting.”

And the final death story there describes a certain Mr. Mengsun as having reached the perfect attitude toward life and death. He understands nothing about why he lives or dies. His existence consists only of waiting for the next unknown transformation. “[H]is physical form may meet with shocks but this causes no loss to his mind; what he experiences are morning wakings to ever new homes rather than the death of any previous realities.”

The freshness of the new transformation into ever new forms, and the ability to wholeheartedly embrace the new values that go with them, seems to require an ability to let go of the old completely. I think most of us will agree that such thorough forgetting is a pretty tall order! It seems that it may, ironically enough, require a lifetime of practice.

Yancy: Given the overwhelming political and existential global importance of race at this moment, do you have any reflections on your role as a white scholar of Taoism? In other words, are there racial or cultural issues that are salient for you as a non-Asian scholar of Eastern religious thought?

Brook Ziporyn: A very complex question, probably requiring a whole other interview! But my feeling is that, when dealing with ancient texts written in dead languages, the issue is more linguistic and cultural than racial. This goes for ancient Greek, Hebrew, Sanskrit and Latin texts as well as for ancient Chinese texts, all of which bear a complex historical relation to particular living communities and their languages, but all of which are also susceptible to fiercely contested interpretations both inside and outside those communities.

I think it’s a good thing for both Asian and non-Asian scholars to struggle to attain literacy in the textual inheritances of both the Asian and the non-Asian ancient worlds, which is “another country” to all of us, and to advance as many alternate coherent interpretations of them as possible. These interpretations will in all cases be very much conditioned by our particular current cultural situations, and these differences will certainly be reflected in the results — which is a good thing, I think, as long as we remain aware of it.

Writing about Taoism in English, one is speaking from and to an English-reading world. Doing so in modern Chinese, one is speaking from and to a modern-Chinese-reading world. Working crosswise in either language, as when a culturally native Anglophone like myself writes about Taoism in modern Chinese, or when a native Mandarin speaker writes in English about Taoism, or for that matter in either English or Chinese about ancient Greek philosophy or the Hebrew Bible, the situation will again differ, and the resulting discussion will reflect this as well.

In terms of the dangers of Orientalism, though, what I think must be especially guarded against is making any claim that whatever anyone may conclude about any particular ancient Chinese text can give any special insight into the politics, culture, or behavior of modern Chinese persons, communities or polities. The historical relations between modern and ancient cultural forms are simply too complex to think that the former can give one any right to claim any knowledge about the latter.

Complete Article ↪HERE↩!

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Learning to talk about death and dying should start early in doctors’ careers

Hilary thinks people can talk about their end of life wishes more easily with someone who is not family

By Junaid Nabi

When I started medical school, I fully expected to learn how the nervous system works, why heart attacks happen and what to do to stop them, and how the immune system sometimes turns against the body and causes autoimmune diseases. One of the things I needed to learn but didn’t was how to talk with people about death and dying.

To fill that gap, I enrolled in a course at Harvard Medical School on communication strategies during end-of-life care. It was designed to help budding physicians understand how spirituality, end-of-life care, and medicine interact. What I learned surprised me.

I found out that I wasn’t alone in feeling that I was ill-prepared for having effective end-of-life conversations. Physicians in general tend to be particularly limited in their ability to discuss issues such as how long patients will survive, what dying is like, or whether spirituality plays a role in their patients’ last moments.

At first glance, physicians’ poor understanding of death and the process of dying is baffling, since they are supposed to be custodians of health across the lifespan. Look deeper, though, and it may reflect less the attitudes of physicians themselves and more the system that nurtures them. After all, we train vigorously on how to delay the onset of death, and are judged on how well we do that, but many of us get little training on how to confront death.

At one of the seminars that are part of the course, a young man was asked about how he felt during the final days of his mother’s struggle with cancer. “Pain is not suffering if it has a meaning; if it doesn’t, pain and suffering are the same thing,” he said.

That juxtaposition of pain and suffering struck me as an important reminder of the vital role physician communication plays from a patient’s point of view. I realized that a transparent communication strategy can ease suffering and make pain more bearable.

In the process of my coursework, I also realized that significant communication barriers exist between physicians and patients to discussing end-of-life care. When physicians aren’t trained about how to approach patients and their families regarding end-of-life decisions, it’s difficult, if not impossible, to provide the care they want and need.

In one survey, nearly half of the medical students and residents who responded reported being underprepared to address patient concerns and fears at the end of life. About the same percentage said that “dying patients were not considered good teaching cases.” In other words, patients on palliative care with no need of further interventions were seen as offering little in the way of imparting clinical knowledge — even though they might have been wonderful cases for learning more about death and dying.

It’s still unclear whether such limitations arise from personal difficulty talking about this sensitive topic, an inadequate medical curriculum, or a lack of training during residency on how to communicate with terminally ill patients.

When a robust rapport between patient and physician is lacking, or when a physician hasn’t taken enough time to lay out all the options, hospitals tend to follow the “standard” protocol: patients — often at the insistence of family members — are connected to several intravenous lines and an intubation tube, or put on life-support machines, all because the patient or the family never had a clear conversation with the medical team about the severity of the disease and its progression.

That’s not how physicians prefer to die. In a famous essay, an experienced physician wrote that most doctors would prefer to die at home, with less aggressive care than most people receive at the ends of their lives. They understand that such efforts are often futile and take away from the precious time that could be spent in the company of family and friends.

Intensive management of patients with poor prognosis can result in severe emotional damage to patients and their family members. They also have significant policy implications: On average, 25 percent of Medicare payments go to patients in the last year of life, with one-third of that spent in the last month, often on clinical services with negligible benefits.

Physicians certainly share some of the blame for these gaps in communication. But we need to be aware of the role health care systems play in shaping end-of-life interactions. Over-treatment is often encouraged, and with little guidance or feedback on how to navigate end-of-life care, physicians can feel vulnerable to malpractice lawsuits. Due to ever-changing regulations, most interns, residents, and attending physicians are forced to spend more and more time typing into their patients’ electronic health records and less time sitting with their patients, talking with them and understanding what they want and need at the ends of their lives. The issue of resource allocation may also play a role. Medical centers often suffer from a shortage of physicians, and struggle to balance comprehensive teaching with quality patient care.

One way of addressing these deficiencies is to incorporate into the medical school curriculum required courses in which students are provided space and time to reflect upon the limitations they face when engaging with patients with terminal diseases. Some schools have already started this process, albeit as elective courses. Senior physicians also need to play more active roles as mentors, guiding younger doctors on how to approach these complicated situations.

In a book written as he was dying from lung cancer, Dr. Paul Kalanithi said this: “Doctors invade the body in every way imaginable. They see people at their most vulnerable, their most sacred, their most private.”

Physicians have a responsibility to initiate and maintain an open channel of communication with each patient, understand and address the values that he or she holds dear, and talk frankly about the prognosis of his or her disease. If they lack the skills to talk openly about dying and death, one of the most sacred and private transitions, they do their patients a disservice and possibly prevent them from receiving the best possible end-of-life care.

Complete Article ↪HERE↩!

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Death Doula: We Are Segregated, Even After We Die


Lupe Tejada-Diaz works as a death doula and helps communities of color through the holistic and legal aspects of death.

By Dylan Allswang

In the midst of the coronavirus pandemic, one of the major issues for our country is the disproportionate effect COVID-19 is having on communities of color. Both infection rates and death rates are much higher in these communities than in white communities. 

This is causing an increased need for healthcare, especially hospice care.

We talked to 24-year-old Lupe Tejada-Diaz who works in Washington state as an end-of-life care specialist and a death doula (a non-medical person trained to care for someone holistically at the end of life). She discussed why at such a young age she decided on this career, being an advocate for patients in hospitals especially during the pandemic and undoing the stigma around death as a taboo topic.

This interview was edited for clarity and length.

DYLAN ALLSWANG: Can you describe what the job of being a death doula entails for people who may not be familiar with that?

Lupe Tejada-Diaz: A death doula is somebody who handles the nonmedical aspect of dying. We counsel people through what they want their death to look like. We help them plan and — if they would like — on the day of their death. And after, we help their families deal with all the bureaucratic things that go into it.

DA: Who are some of your usual clients?

LTD: I work specifically with people of color, indigenous people, LGBTQ communities and low-income communities. I do a lot of community education. So I work at senior centers and community areas that ask me to come in and talk about accessible care options.

DA: This is a pretty unique career path. Why did you choose to be a death doula?

LTD: I saw a need in my community that wasn’t being met. In America, death is still really segregated. And a lot of people don’t think about when we [people of color] go into a white-owned funeral home, they don’t know how to do our hair; they don’t know how makeup works on our skin tone.

I wanted people to see that there are different options. Also that you don’t always have to pay hundreds of thousands of dollars to have a good death. When you die in America, you have to kind of undo the life you had. If you have debts, they need to be settled and sorted and your assets have to go through the system called the probate system.

In order to do that, you need to have all kinds of paperwork, different death certificates, different powers of attorney and it’s really difficult for families who are grieving to call 100 different companies and be like, “Oh yeah, so and so died.” So that’s where I come in and help do that kind of tough stuff for them because death in America is unfortunately a super long and arduous legal process.

DA: Communities of color are more likely to distrust medical institutions. How does that play into your line of work?

LTD: So in a lot of the American health care systems, people of color specifically aren’t treated the same way that their white counterparts are. They are kind of brushed aside. Their concerns are not addressed. 

I think that with the coronavirus, now more than ever, we are seeing that people of color are dying at disproportionate rates to white people. And the people working in death are also really tired because even in the middle of a pandemic, we still want to honor this wish that our cultures have.

I think that having someone who speaks the same language or looks like you or from the same kind of background, really helps you feel that sense of security that you normally wouldn’t get in hospitals or clinics. You feel like someone is on your side to kind of help you battle through that. So there’s more trust.

DA: How are you working with clients during the pandemic?

LTD: So we’re doing a lot of virtual communication, Zoom and FaceTime. But I’m also still doing a lot of the legal work I do. But unfortunately, the people that are taken into the hospital, I’m unable to be an advocate for them because it’s kind of out of our hands at this point. People are scared. People are worried that they’re not going to be able to have the traditional funeral burial services that they wanted their whole lives.

Specifically the Indigenous community, we have gone through epidemics and pandemics, not quite to this size, but the kind that wiped out our entire tribe and our entire society. So we have a sense of knowing that it will pass, but there is still that fear. We all just have to do our part to stop the spread and to be mindful of our neighbors as we possibly can be.

DA: Why do you think death is such a taboo topic?

LTD: I think that the main goal for a lot of death doulas is to spread awareness that it’s OK to talk about death. Talking about it isn’t going to bring death. There’s a lot of superstitions along those lines. And I just want everyone to know that it’s not necessarily something scary. It can be something beautiful.

We don’t have to rely on our doctors and hospitals to deal with death if it’s something that we can deal with at home. There’s a place for medicine and there’s a place for home care. And by marrying that together, I think it would really help the landscape of the American mentality for future generations.

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