Month: September 2020

Posted on

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↩!

Posted on

This year, Rosh Hashanah is a time of mourning

By Elliot Kukla

Yesterday, the sun did not rise in my Bay Area home. My toddler who usually wakes at dawn, slept until 9am and woke up confused, pointing to a dark umber colored sky, obliterated by clouds of smoke from wildfires billowing all over the West Coast. Even the hummingbirds and bees in my backyard were disoriented.

This fall, we are not approaching an ordinary New Year. I will celebrate Rosh Hashanah in my living room, connected by video conference technology to my community, as California burns, hurricanes threaten the southeast, and the entire country faces a lethal virus. Everything is changing. We can no longer even depend on the sky to be blue.

We have all faced so much loss in the year that passed, but have we taken time to grieve?

Some of the losses of the past year have been obvious and clear: Precious people have died, countless homes and habitats have burnt down, and jobs have been lost. Other losses are more amorphous. We don’t know yet what we will get back of the world of 2019: Will our kids ever get to play freely again? Will we have predictable seasons in the future?

I am a rabbi who offers spiritual care for grieving and dying. I have learned from my clients that grief is essential; without naming the loss we are unable to draw together and comfort each other and we remain isolated in our suffering. There is a cavernous absence of public grieving for the momentous losses we all are facing in 2020.

Just consider the scale of resources given to grieving the 3,000 lives lost in 9/11, versus the 190,000 people (and counting) who have died in the COVID-19 pandemic in this country. Where are the large national memorial services, the plans for monuments, the presidential condolence visits? Much of this disparity is linked to who is dying (at least in the public imagination), and the prevailing belief that “only” old, sick, and disabled people die of COVID-19.

Mourning is humanizing, and its absence cracks open the door to atrocities.

My Jewish ancestors were snatched off the street by SS officers and buried in mass graves; my queer ancestors were denied funerals out of fear and bigotry as they died of AIDS. My disabled ancestors were warehoused in institutions, and often buried without names on their graves. My trans ancestors are left murdered in alleys, their cases growing cold, as I write this.

Despite this lack of official lamentation, they found ways to mourn and be mourned by each other. Grief has always been a way for disenfranchised people to claim our value.

After surviving the Holocaust in Belgium, my great-grandmother Rivka moved to England. Before she died, she took my father out to the coal heap behind their home: “Swear on this mountain,” she said to him, “that you will mourn for me.” To this day, I feel bound by this oath made by my nine-year-old father long before I was born, to grieve for this woman I never met, whose face looks so much like mine.

My friend, Stacey Park Milbern, died on May 19th, 2020, her 33rd birthday. She did not die from COVID-19, but from battling for care in the beleaguered medical system as a disabled activist and a person of color in an era of pandemic. I attended her funeral from my living room. I picked white geraniums and purple thyme from my garden and held my partner close. The internet was flooded with what Stacey taught us.

Disabled activist Alice Wong wrote an obituary on loving Stacey and the radical world of love and care she had built. Wong’s post was filled with Stacey’s own words on her legacy: “I do not know a lot about spirituality or what happens when we die, but my crip queer Korean life makes me believe that our earthly bodyminds is but a fraction, and not considering our ancestors is electing only to see a glimpse of who we are.”

Reading Stacey’s words and Wong’s tribute, I felt my own sense of self-love as a disabled person, restored by mourning for Stacey, at the same time as aching against the unfairness of it all.

Rosh Hashanah is the beginning of the new year, but it is also a time to say good-bye to the year that past. Our ancestors, like us, lived in times of chaos and change. Tears are a central High Holy Day theme. All the traditional Torah and Haftarah readings for Rosh HaShana speak of weeping.

The Shofar itself is a symbol of tears. Our sages teach that the ram’s horn we blow on Rosh Hashanah must be kakuf (bent) to reflect our own bodies bent over in grief; while shevarim (the broken blasts of the shofar) are meant to echo the sound of our own tears, they are always surrounded by tekiah (whole sounds). This teaches us that even though our heart has been broken it has the capacity to be whole again and, in fact, more complete for having encompassed brokenness.

Grief is transformative: When we name the immensity of loss, we also claim the depth of our capacity for love.

Complete Article ↪HERE↩!

Posted on

A dad, brother and sister —

Woman who lost three relatives to suicide focuses on helping others with sudden loss

by Alexandra Heck

It’s a level of loss many would struggle to comprehend.

Jane Brown has lost three members of her family to suicide; her father when she was 29, her brother more than 20 years ago, and more recently her sister.

“There are stages in grief,” said Brown, who now offers support for others who have lost loved ones to suicide. “I didn’t always feel how I feel today.”

Brown is part of the Support After Suicide team with a program called Here4Hope, a partnership between the Canadian Mental Health Association of Waterloo Wellington, the County of Wellington and Wellington OPP.

It’s a program to help families, friends, colleagues and caregivers grieving from the often, sudden loss.

“When a community member dies there are so many that can be touched,” said Cecilia Marie Roberts, suicide prevention lead with CMHA Waterloo Wellington.

She says that Here4Hope is the first of its kind, because it pairs bereaved individuals with a police officer who can act as a liaison on the investigation, mental health support, and the guidance of someone who has similar lived experiences.

She said what follows from a suicide is often a traumatic and complex grieving process, and many may be afraid to talk about it or reach for help.

The program is a three-year pilot project funded by the Ministry of the Solicitor General, aiming to stabilize those in initial shock and work with them in the days and months following.

Both Brown and Roberts say that everyone grieves differently, and that with a traumatic event, there really is no correct order or timeline for how someone may work through the stages of loss.

In the early days, the team helps families with many of the practical questions.

The liaison officer can help answer questions about their loved one’s personal effects, the coroner’s timelines, questions about an investigation.

“There’s definitely support for our officers as well,” said Wellington County OPP Detachment Commander Insp. Paul Richardson.

He said that when someone dies in the community outside of hospital, officers are on scene.

They see what has happened. They are often the ones who speak with family.

He said the program gives officers comfort in knowing that there’s support for those that they meet in these situations.

“They have seen first-hand the pain and the anguish families feel,” said Roberts.  

Questions about writing an obituary, funeral arrangements, speaking with the media and explaining the situation to children are all daunting tasks that the team can give gentle guidance on.

During the next six to eight months, their support changes shape.

“That’s when the anniversaries start happening,” said Roberts, explaining that the first Christmas, birthday, back-to-school, have a tremendous effect. “Those first anniversaries can be so painful.”

Roberts says that life is never the same after losing a loved one to suicide. Instead, things shift and change.

“You move on to a new normal,” she said.

Over and over again, Roberts has heard from clients about the importance of having someone to relate to, someone who has faced a similar experience.

“I think the biggest thing that I offer is hope,” Brown said, noting that she never knows how someone is feeling, but can share how she felt when she was faced with similar circumstances.

“I’m not going to judge them,” she said, explaining her role is primarily to listen.

She shares ideas for coping and stresses the importance of having a strong support network.

Brown wants anyone in Wellington County to know that there are resources available if they are grieving the loss of someone to suicide.

“There’s help out there,” she said.

Complete Article ↪HERE↩!

Posted on

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↩!

Posted on

‘Confirmation of Death’©️

Dr Cathy Welch

The argument about who can or should be responsible for confirmation of death has escalated and evolved over the past few years, alongside changing opinions and legislation regarding CPR and end of life care planning, etc.

But the rise of the Covid-19 crisis has taken the issue to another level. And so, the argument rages on about who owns the rights to use the title ‘Confirmation of Death’©️.

Should death be a medical diagnosis? Are nurses capable of diagnosing death?

And now arise the questions ‘does it have to be a healthcare professional?’; ‘does the healthcare professional have to be there in person?’; and ‘can undertakers confirm death?’

The law has not significantly changed – it still remains that any competent person can confirm death. It‘s only by convention that ‘person’ has been historically replaced (to varying extent by postcode lottery) with ‘healthcare professional’.

Unfortunately, Pulse’s article ‘DHSC says GPs can provide ‘remote clinical support’ for death verification’ earlier this year continues to use language that perpetuates the unnecessary dogma that this is ultimately a medical role.

Within Dr David Church’s relatively recent blog ‘The stormy night that shaped my views on death verification’, and the following responses, all I see are attempts to justify the status quo based purely on anecdote and modern medical cultural convention. We all want to believe that the days of healthcare policy being based on anecdote are gone, but in reality this is all based on personal bias, hearsay, and myth.

Let’s stop trying to insist that ‘confirmation of death’ is some kind of healthcare copyright issue

So, in the discussions and comments, out come the historical tales of live burials – should we then advocate having a bell system installed in all graves again, as in the 19th Century? And the hypothermic resurrections from the dead – should then every cold body be warmed up, as in the Resus Council hypothermia guidelines (not dead until warm and dead)? Good luck convincing all the hospitals and mortuaries to warm all bodies to normal temperatures before confirming death – they’d be stinking fly pits!

Yes, errors do happen, but extremely rarely. Healthcare-only verification of death is a modern phenomena, driven by persisting attempts to use medical ‘knowledge’ to run away from the inevitable. It’s time to grow up and stop using rare ‘errors’ in verification to cling to current imperfect, unsustainable and inhumane dogmatic ‘rules’ governing ownership of death. How will western society finally grow some cultural wisdom and accept that death is a normal part of life? That death is not failure, not an error, but is an absolute fact of existence, with a 100% lifetime prevalence?

It won’t, as long as the medical/healthcare world continues to grasp at and peddle the concept that death is a medical diagnosis, and can only be confirmed by someone with a five-year degree and however-many years’ apprenticeship. As long as the Grand Guild of Medical Magicians continues to promote the myths that life and death are under our mysterious control, people will continue to live in the shadows of mortal fear, beholden to us to rescue them, and so keep expressing the very same unrealistic expectations that GP mages complain about every day.

My opinion on confirmation of death… the bodies of those who have died will all be dealt with by either an undertaker (mostly), or a pathology morgue. Undertakers are the experts in management of death – handling, dressing, caring for and disposing of the bodies of the deceased. Surely then, they are best placed to be trained in recognition and confirmation of death in the community, as a standard part of their normal procedures?

Death is not a medical ‘condition’ or ‘diagnosis’ to warrant its control by medical/healthcare workers, any more than birth or taxes. Hand back normality to the people. Then, we may find other unrealistic expectations ‘imposed’ on us from our patients start to dissolve away too, because we‘ve been the ones clinging to their ‘need’ for us all the time.

Let’s stop trying to insist that ‘confirmation of death’ is some kind of healthcare copyright issue.

Complete Article ↪HERE↩!

Posted on

In pandemic era, the term palliative care is even more scary for some.

So specialists want to rename it.

By Haider J. Warraich

Palliative care has an image problem.

It’s a medical specialty that focuses on providing relief from the symptoms and stress of a serious illness to improve the quality of life for both patient and caregivers. But while the specialty’s goal is to help all patients with a serious, potentially life-threatening illness, palliative care specialists are almost always involved with patients approaching the end of life.

The result is that the very phrase “palliative care” has become frightening to many people with critical illnesses and their families, wrongly raising the idea that they are being sent to specialists who will help them die. Now a growing movement is advocating to rename palliative care so that patients — and doctors — won’t fear using it.

A recently published research study analyzing the general public’s perception of palliative care among more than 5,000 older Americans revealed that over 70 percent of participants did not even know what palliative care was.

Katy Butler, a health-care journalist who has written about her own experiences as a caregiver for her parents, wrote in an email: “Although I had a general sense of the meaning of palliative — to soften, to soothe — I didn’t understand anything about what it meant in medicine. People in crisis do not have the headspace to learn new vocabulary. It’s one of medicine’s major failings that it expects them to.”

Of those who are aware of palliative care, the same study shows almost two-thirds think it is the same as hospice, which is a service delivered at home or in a facility for someone with an expected survival of no more than six months.

Most physicians are likely to call palliative care specialists primarily when death is imminent — many worry that calling in a palliative-care consultation will increase anxiety and fear among patients. Diane Meier, a palliative care specialist who directs the Center to Advance Palliative Care, said “doctors are the group most fearful of death. We are people who like to achieve control over the uncontrollable. For our profession in particular, it is existentially threatening. Any acknowledgment that life is finite, that we don’t live forever, is like saying there is no God.”

Yet palliative care not only has been shown to repeatedly improve quality of life in patients with conditions such as cancer and heart failure, but also has been shown in some studies to help people live longer, perhaps through avoidance of potentially ineffective treatments, procedures and hospitalizations.

To increase the acceptability of palliative care for both patients and clinicians, as well as to delink it from death, palliative care practices around the country are substituting the name “palliative care” with “supportive care.”

There is evidence to suggest that this name change might reduce reluctance to engage palliative care specialists in the care of patients with advanced illness.

A study from MD Anderson Cancer Center in Houston showed that changing the name of the palliative care service to supportive care led to not only an increase in referrals by 41 percent but also earlier referrals: Patients seen by “supportive care” lived on average for 6.2 months, compared with 4.7 months among patients seen by “palliative care.” In a randomized trial, patients with advanced cancer viewed the term supportive care more favorably and were more likely to anticipate using supportive care rather than palliative care.

Words clearly matter and perhaps never more so than when life hangs in the balance. Yet even as evidence mounts, one study found that many palliative care specialists oppose a change of the specialty’s name. There are countless medical journals and organizations that have palliative care in their name.

“How do you identify as a tribe, as a field, as a subspecialty if you don’t know what your name is,” said Meier, a professor at the Icahn School of Medicine at Mount Sinai. Yet Meier also believes “we should call it whatever it takes to get it to the patients.”

The resistance to palliative care is ultimately rooted in our collective denial of our mortality. “Changing the name doesn’t change the underlying dynamic,” said Anthony Back, a palliative care physician and professor at the University of Washington in Seattle who was a co-author of the recent study on public perceptions. “Palliative care specialists are often used [late in the process] as the ‘brink of death consult.’ And if we don’t change ourselves, changing the name isn’t going to be enough.”

Even as the debate goes on, the use of “supportive care” is growing among those who treat patients, and instead of educating the public about what palliative care means, they want to focus on what palliative care does — what the benefits are not just to those at the very end of life.

Yes, palliative care specialists will be asked to see patients where other doctors find them of most value — when death is imminent — but the concept that really needs rebranding is death itself. As long as patients and doctors react to that fear by recoiling at its every mention, any new name reminding them of their mortality will quickly become tainted.

This seems important at this particular moment: the covid-19 pandemic has raised the specter of death for many people who hadn’t thought it would apply — yet — to them. People not only face a higher risk of premature death from the disease, they often have to do it in the worst circumstances possible — with a breathing tube down their throats and all by themselves.

Yet, because of the pandemic, palliative care doctors believe that they might have an opportunity to redefine what they do and demonstrate its value to patients in need.

“In New York, there was this urgency with which our colleagues sought our help, because they were under such extreme stress. It made me comment that covid-19 was the best marketing campaign palliative care could have asked for,” Meier said. “Our colleagues were looking to us to be the human side of medicine.”

In providing care to the sickest patients in the hospital, many of whom survived, palliative care specialists provided crucial supportive care not just to patients and their loved ones, but also the doctors struggling to take care of them.

The pandemic has given palliative care doctors more work than ever before and has added a new charge to palliative care, Anthony Back said, to fulfill our most human desire — to acknowledge the moment.

Complete Article ↪HERE↩!

Posted on

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.

Complete Article ↪HERE↩!