Month: February 2022

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End-of-life policies vary in United States prisons

There is significant variability in state- and nationwide policies on end-of-life decision making in United States prisons, a review finds.

“…the Federal Bureau of Prisons policy states that DNRs should not be followed if the individual is part of a prison’s general population,” says Victoria Helmly.

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The findings show significant variability regarding which incarcerated patients can complete advance care planning documents, how they are granted access to document their end-of-life wishes, and who can serve as their surrogate decision-makers.

There is an urgent need for geriatric and end-of-life care in US prisons. The prison population is aging rapidly, and older adults make up the fastest-growing age demographic among incarcerated individuals. The majority of deaths in prison are due to illness, and older adults account for the largest percentage of prison deaths.

“During the 1980s and 1990s, ‘tough on crime‘ laws produced an increase in very long prison sentences, and as a result we are seeing more people remain in prison into older adulthood,” says Victoria Helmly, a doctoral student in the Georgia State University criminal justice and criminology department. “In addition, more people are entering prison at an older age.”

End-of-life in prison

According to standards set by the National Commission on Correctional Health Care, incarcerated individuals have the right to make end-of-life care decisions. These advance directives commonly include health care power of attorney (in which another individual is empowered to make decisions about their medical care) and “do not resuscitate” (DNR) orders or other directives regarding medical interventions or advanced life support. However, as the study notes, there are multiple barriers to implementing advance care planning in prisons, such as finding a person to serve as a health care power of attorney.

The researchers pulled 36 state-level policies as well as policies from the Federal Bureau of Prisons. They found that 22% of policies state that advance directive documents are offered when a person first enters the prison facility, regardless of age or health status. (Others indicate that end-of-life documents are discussed during medical exams.) More than a third (38%) of policies make no mention of where advance directives are located or when incarcerated individuals should be given the opportunity to complete them.

According to the study, most policies do not state who is eligible to complete advance directives. However, the researchers found notable exceptions. For example, three states (Hawaii, Maine, and Massachusetts) only allow those with terminal illness to complete an advance directive.

Health care proxies

The policies also differed in their approach to who is empowered to act as a health care proxy (i.e. make health care decisions on behalf of patients). Of the policies, 80% do not allow other incarcerated persons to serve as health care proxies, and 60% bar prison staff from serving as proxies. Notably, Georgia is the only state whose policy explicitly allows other incarcerated people to serve as proxies. Many policies also prohibit other incarcerated people (45%) or correctional staff or health care providers (41%) from serving as witnesses to advance directive documentation.

The researchers note that these restrictions warrant further exploration, as they can make it difficult for incarcerated persons to have their end-of-life wishes honored.

“If neither other incarcerated individuals nor prison staff can serve as health care proxies, this may leave an incarcerated person without many other options,” says Helmly, lead author of the study in the International Journal of Prisoner Health.

Nearly all (95%) policies state that advance care planning documents are kept in the person’s medical record, and nearly half (49%) indicate that the documents will be transferred with the individual to a hospital or different correctional facility.

But what about compliance?

The researchers also found very little discussion of compliance. Just one state policy (Idaho) mentions a review of compliance. No policies defined quality metrics or compliance goals. In fact, some policies specifically stated that portions of advance directives do not have to be implemented.

“I was surprised to learn that some policies state that correctional staff can decline to follow DNR orders if they feel doing so would constitute a ‘security’ threat,” says Helmly. “In addition, the Federal Bureau of Prisons policy states that DNRs should not be followed if the individual is part of a prison’s general population.”

In sum, the findings suggest an important opportunity to develop national guidelines for prisons to standardize their policies in accordance with community standards.

“This would help to ensure that incarcerated people across jurisdictions have the same opportunity to document their end-of-life wishes and increase trust that those wishes will be honored,” says Helmly.

Complete Article ↪HERE↩!

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Talking about the value of death

The Report of the Lancet Commission on the Value of Death, subtitled ‘Rebalancing and Revaluing Death and Dying: Bringing Death Back Into Life’, is a timely, cogent and illuminating foray into an aspect of life that few seem to consider, despite it being the one thing that we have in common – we, and everyone we know, will all die someday.

By Sean O’Connor

The Report of the Lancet Commission on the Value of Death, due for imminent release, is part of a series of publications featuring the collaborative work of a broad and diverse range of academic partners, writers, activists, and others, who investigate the world’s most urgent scientific, medical and global health concerns. Their aim is to assess a prevailing issue and provide recommendations that could change health policy or improve practice.

This particular report, subtitled “Rebalancing and Revaluing Death and Dying: Bringing Death Back Into Life”, is a timely, cogent and illuminating foray into an aspect of life that few seem to consider, despite it being the one thing that we have in common – we, and everyone we know, will all die someday.

The Report on the Value of Death is arresting for several reasons, which benefit from a nuanced understanding of what professor emeritus at Arizona State University and author Robert Kastenbaum has termed “death systems”. These are “the means by which death and dying are understood, regulated and managed”, which Kastenbaum first described as “interpersonal, socio-physical and symbolic networks through which an individual’s relationship to mortality is mediated by society.”

These systems are complex, multidimensional and mutable, not easily changed, and shaped by spectrum of cultural, religious, spiritual, political and legislative practices, which “implicitly or explicitly determine where people die, how dying people and their families should behave, how bodies are disposed of, how people mourn, and what death means for that culture or community.” (The report limits itself to death and dying, and does not examine what happens to the dead.)

“Society and the medical world have considered black lives cheap.”

Death systems, the authors point out, are “not benign”. An afterword by Mpho Tutu van Furth, a South African Anglican priest, author and activist who has lived in the US, provides a corrective to the predominantly white, wealthy and Western perspective that embeds itself in much of the report’s narrative, which the commission is self-consciously aware of.

Writing from her own perspective and not “on behalf of two-thirds of the world’s population” who do not enjoy access to healthcare, she attests to her own experience as a black South African woman and mother to two African American children, picking apart the cultural anomalies she witnessed growing up and going some distance further.

“I saw the white flight from ageing and death,” she writes. “Black people had no illusion we could escape death. Black South Africans did not desire immortality. In death we would be gathered with our ancestors. ‘Going home’ to our forebears was considered the reward for a life well lived.”

This, however, takes place in the context of malevolent racism, both in South Africa and the US. “Society and the medical world,” she writes, “have considered black lives cheap.” She squarely accuses racism as a determinant of death’s value, saying that to “ascribe the correct value to death we must assign the right price to every life”, and provides the example of how Covid has disproportionately affected and afflicted black people everywhere.

Initiated before the current pandemic, the report nevertheless situates itself here, yet looks to the future.

Interestingly, it presents evidence that our collective experience of death during Covid has “further fuelled the fear of death”, instead of the opposite. Daily death tallies and statistics have not normalised death or brought it closer, but spurred further abstraction. Supporting this claim, the report draws attention to the extreme “medicalised death” (for some) that Covid has provided: death that has occurred in the forbidden province of a sealed hospital, staffed by masked and muffled and often stressed personnel, with limited communication between family members. We’ve had more death, but moved it even further away.

The authors note: “The increased number of deaths in hospital means that ever fewer people have witnessed or managed a death at home. This lack of experience and confidence causes a positive feedback loop which reinforces a dependence on institutional care of the dying.

“Medical culture, fear of litigation, and financial incentives contribute to overtreatment at the end of life, further fuelling institutional deaths and the sense that professionals must manage death. Social customs influence the conversations in clinics and in intensive care units, often maintaining the tradition of not discussing death openly. More undiscussed deaths in institutions behind closed doors further reduce social familiarity with and understanding of death and dying.”

“Death is essential… Without it, every birth would be a tragedy… and civilisation would be unsustainable.”

This experience, reinforcing the pervasive idea of healthcare services as the legitimate and proper “custodian of death”, is a trend initiated generations ago for a bevy of reasons. The authors relay that over the past 70 years, the “shifting role of family, community, professionals, institutions, the state, and religion has meant that healthcare is now the main context in which many encounter death”.

A natural death, in this paradigm, is simply considered as the cessation of medical support, and, according to the social critic Ivan Illich, “dying has become the ultimate form of consumer resistance”. (Similarly, the co-founder of the Death Café movement, the late Jon Underwood, found a strong parallel between death denial and consumer capitalism. We buy stuff to perpetuate the idea of immortality through ownership, to feel alive, imagining that possessions confer meaning to life. Yet even if they last, we don’t.)

The responsibility of healthcare, commonly understood as the prolonging of life and avoidance of death, therefore regards death itself as a failure. At the heart of the report is an urgent and radical proposal – that we unpick and redetermine what medicine should do, and revalue death, recognising that it is not only normal and natural, but valuable, and has much to teach and bestow on us. After all, we were designed to die. We are a part of nature, as the pandemic has reminded us. “Death is essential,” the authors write. Without it, “every birth would be a tragedy” and “civilisation would be unsustainable”.

In rediscovering the intrinsic value of death, lost in the attrition of community skills and experience in care for our dying, and the concurrent emergence of life-saving medical technologies and the outsourcing of death, we are now urged to bring death closer, to talk about it and recognise that it provides an opportunity to build and maintain the relationships that sustain life itself.

In losing death, we lose life.sp;

That death has become rarefied, obscured, mystified and hidden is a core problem, entrenching an imbalance that the recommendations of the report attempt to address in practical terms. The commission (which is how the authors refer to themselves, continually incorporating new members and ideas and inviting participation at every turn) is essentially concerned with the different ways we die, and proposes that death, dying and grief provide an acute lens not just into different death systems but into structural inequality and power dynamics which need urgent attention and change.

For example, women are disproportionately affected by death, and are typically seen as caregivers for the afflicted and dying, spending at least 2.5 times more time than men in unpaid care and domestic work. (In my own group of death doulas and end-of-life carers, for example, I am the only person who identifies as a man in a group of 40 women.)

In addition, widows are routinely stigmatised, in both rich and poor contexts, and commonly denied access to property or assets after the death of a spouse, whose existence often defines their own, and sometimes forced into degrading post-marriage rituals (treated as common family property) or shunned from employment or society. In middle- and high-income environments too, widowhood presents difficult social barriers and loss of status, income and life chances.

We are continually reminded in many examples in this report that the “impact of race, class, gender, sexuality, socioeconomic status, or other forms of discrimination on mortality rates, access to care, or the incidence of diseases or conditions, is well established”. Indeed, inequality is emphatically expressed in the perverse finding that those who receive the most care often don’t need it, while those who need it the most don’t get it. Poor people usually experience poor death. The relatively well-off may attempt some form of inoculation via medical care, but this too tends to have an often poor result. Death could clearly be better for everyone. The authors contend that “most conditions for a good death could be offered to most dying people, without costly medical infrastructure or specialised knowledge”.

At the heart of this paradoxical imbalance, the report locates the prevalence of “overtreatment” at the end of life as a particularly pernicious and often damaging practice and one which consumes a massive proportion of healthcare budgets the world over.

A startling finding is that in the last month of a person’s life, whether in a resource-rich or poor context, a stupendous spike in costs usually occurs, frequently bankrupting surviving family – despite having no positive benefit to the dying, and often increasing suffering.

But perhaps this is old news for people who’ve found themselves in this situation, unable to delimit potentially life-extending treatment, which doesn’t necessarily improve the quality of life at all, for fear of being held accountable for death, or hastening it, and going against the grain of the medical impetus to prolong. In my own experience, I recall the glee conveyed by a daughter and her terminally ill mother who had together decided to abandon the crippling costs of another round of pointless chemotherapy and go on a final road trip together instead.

Medicine’s remit to extend life isn’t appropriate where there is no realistic prospect of influencing life’s quality. While the palliative care movement is fortunately making strong if uneven advances for limiting pain at the end of life, and building models of holistic, integrated and team-based care that includes families to provide support that focuses on improving life’s quality in balance with death’s inevitability, far too many people die of common conditions that could be treated, and with no pain relief.

The World Health Organization reports that only 14% of people needing palliative care receive it. (This is the focus of a separate Lancet Commission report but is frequently referred to here.)

The report, drawing from a deep well of research (all of which is available on the commission’s website) presents fascinating evidence of the frequency of hope and bias as causes of overtreatment, further entrenching the medicalisation of death. Hope, they posit, can encourage confirmation bias, where the subconscious selection of information usually accords with a desired outcome – to stay alive. This racket is often run in collusion with afflicted individuals, their worried families and healthcare professionals alike. Bias similarly expresses itself in treatments recommended with little chance of success, even at any cost.

For example, in a study of 1,193 patients with late-stage cancer, 60% and 80% respectively of those with lung cancer and colorectal cancer receiving palliative chemotherapy “expected the treatment to cure their illness despite the treatment not intended to be curative”. Doctors, meanwhile, routinely show bias in their assessment of the likelihood of curative treatment. Better conversations need to happen, that recognise and are free of fear.

Perhaps this is unsurprising in a system where relationships and networks are replaced with professionals and protocols. In Cape Town, I recently listened to an esteemed city official describe ways to “optimise death chain management” during the pandemic. Psycho-spiritual support and home-based community care were off the radar.

Of several discrete yet overlapping sections in the report, the chapter on “advanced life directives” is particularly convincing as evidence that a positive shift in our death systems can be achieved through a reorganisation of relationships, without much expense.

Considering the level of end-of-life you deem appropriate (such as no insertion of artificial feeding tubes) can form part of a healthy communication between family members, and provide a binding template for your instructions when you may no longer be able to convey them, especially to medical staff. This, the authors suggest, should not be regarded as a “difficult” conversation, but recast as an “essential one”. (Readers might find some assistance here)

It seems like we have lost the ability to talk about death, as though talking about it is morbid, even fatal… We can perhaps embrace the idea that talking about death is good for life.

The report suggests that this conversation is seen as a process rather than an event, and draws from Atul Gawande’s seminal book, Being Mortal, to help frame this. In the context of illness, he asks: What is your understanding of where you are and of your illness? What are your fears or worries for the future? What are your goals and priorities? What outcomes are acceptable to you? What are you willing to sacrifice and not? And later, what would a good day look like?

The consequences of not having these conversations are severe. Having them, on the other hand, can limit suffering and provide pathways to healthy grief and loss that is less complicated than it might be. It seems like we have lost the ability to talk about death, as though talking about it is morbid, even fatal.

The death doula movement, the palliative care movement and other cultural projects promoting awareness of death, such as Death Cafés and the “death positive movement”, are changing this. These have, argues the sociologist Lyn Lofland, even heralded the age of “thanatological chic”. Perhaps this is necessary. For a rebalancing and revaluing of death, the report suggests, entails the active promotion of “death literacy”, which is something we can all learn. Evidence suggests, the report says, “that talking collectively about these issues can lead to an improvement in people’s attitudes and capabilities for dealing with death”. We can perhaps embrace the idea that talking about death is good for life.

This requires more change. The report mentions that until relatively recently, just two generations ago, most children would have witnessed a dead body. Now however, it is deemed some kind of aberration to have seen a corpse, as something remarkable and untoward, even unnatural. Many people in mid-life have never laid their eyes on the lifeless remains of a former co-traveller. We have become alienated from death, treating it as something to be avoided. Indeed, a plethora of scientific, technological, social and even religious endeavours reveal, in their quest for immortality, a possible anxiety that life is somehow insufficient and lacking. This impulse to escape mortal confines raises some profound philosophical, ethical and practical questions, not least of which is a question about access and further inequality. (Mpho Tutu van Furth’s earlier testimony regarding the welcoming return home in death for black Africans is a useful counterpoint, once again.)

Several of these initiatives are briefly described in the report, encompassing a quest to preserve life through anti-ageing techniques and a confabulation of associated technologies, the lasting idea of a magical elixir, uploading a digital mind and memories to the cloud, cryogenics, cloning, the egoistic impulse to create “legacy”, even the belief in an immortal soul forms part of this complex – which, bluntly, is an aversion to physiological death and pulling away from the thing that is most essential to life – our death. The Scottish-born former director of the Institute for the Future, Ian Morrison, is quoted here, joking that “Scots see death as imminent. Canadians see death as inevitable. And Californians see death as optional.”

Assisted dying, which is legal in Canada, receives broad examination in the report. As it seems likely to become more widespread, according to the authors, and is the subject of increasing debate worldwide, including South Africa, the report provides a refreshing summary of questions about assisted dying that demand further inquiry. These are proposed without the delimiting taint of an imposed morality, which often confounds consideration of this very germane topic.

A similarly dispassionate yet inspired gaze is deployed into consideration of five possible future scenarios for death and dying, as well as an extensive description of the remarkable paradigm shift in Kerala, India (population 35 million) where “dying from a life-limiting disease is a social problem with medical aspects rather than the commonly held converse view”.

The report concludes with a list of recommendations organised into various categories and the enumeration of the qualities required for what the authors describe as a “realistic utopia”, a desired model inspired by the Keralan example, and a way that each of us can work to change the death systems we inhabit.

Briefly, these qualities are: that “the social determinants of death, dying, and grieving are tackled”; that “dying is understood to be a relational and spiritual process rather than simply a physiological event”; that “networks of care lead support for people dying, caring, and grieving”; that “conversations and stories about everyday death, dying, and grief become common”; and perhaps most importantly, that “death is recognised as having value”.

Incredibly, even though death and dying are part of life – an everyday part of life affecting us all, as we are continually exposed to the death of others and live with the certainty of our own mortality, indeed, are embroiled in the twin process of living and dying in every moment as we move from birth – death is not only absent from many medical conversations, but social ones too.

This report encourages the fact that we clearly have much to talk about. Death is part of life, not something that happens at the end of it. Breaking the taboo about speaking about death feels transgressive and can be revelatory.

Revaluing death, as this remarkable report suggests, has the profound ability to make lives better. The philosopher Martin Heidegger, who examined our relationship with death and who is quoted in the report, reminds us that although we may apprehend the death of others, no one else can “die my death for me”. Acknowledgment and contemplation of this ineluctable fact free us to “authentically become who we are” and, hopefully, encourage us to take up the shared responsibility of affording the same value to the death, and life, of everyone who draws breath.

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That Mental Rut You’re Going Through Has a Name

— And Here’s What to Do About It

You’re not the only one who isn’t thriving right now—and that’s OK.

By Elizabeth Yuko

When someone asks you how you’re doing with genuine concern, you might be at a loss for how to articulate how you’re feeling lately. And it might be so hard to find the words because you’re not really feeling anything—or more specifically, you feel that your life has become sort of stagnant and directionless. In other words, you might be “languishing.”

Languishing can also be described as a “dulling of our emotions,” says Dion Metzger, M.D., a psychiatrist practicing in Atlanta. “It’s not sadness, but a lack of joy,” she says. “It’s a neutral feeling of emptiness.”

Even if you’re not familiar with the term, you may be familiar with the feeling—and you’re not alone. In fact, a 2021 survey on mental health found that around 20 percent of Americans are languishing, and this state of “blah” was found to be most common in millennials. So what exactly is languishing, how does it manifest, and how is it any different from, say, depression? We asked mental health experts for the key signs and helpful coping strategies for anyone who’s languishing.

What is languishing?

American sociologist and psychologist Corey Keyes, Ph.D. was the first to use the term languishing as a way to describe a person’s mental well-being. Much of his research has approached mental health as a continuum, with the idea that the absence of mental illness does not automatically translate into the presence of mental health. More specifically, on one end of the spectrum, Keyes would describe someone who is mentally healthy as “flourishing,” while someone with an absence of mental health would be “languishing.” In his seminal 2002 paper on the mental health continuum, Keyes notes that people who are languishing face a risk of a major depressive episode that is two times higher than those who are moderately mentally healthy, and almost six times greater than those who are flourishing.

“Languishing can feel like a gray cloud of ‘blah’ has settled over you,” says Carla Marie Manly, Ph.D., a clinical psychologist in Sonoma County, Calif., and author of Joy From Fear. And while languishing is often associated with depression, she explains that it “is often seen as a more temporary response to unremitting stress, disempowering experiences, and frustration.”

Languishing vs. Flourishing

In his work on the mental health continuum, Keyes indicated that, generally speaking, positive feelings and functioning in life indicate flourishing mental health. Languishing exists on the opposite end of the spectrum and refers to lower levels of positive feelings and lower functioning in life. As Dr. Metzger puts it, “languishing is joyless,” whereas a person who is “reaching [their] full potential of capturing life’s joy” is flourishing.

“Languishing involves a general ‘pulling back’ from life, and involves a decrease in positive feeling states,” Manly explains. “Flourishing, on the other hand, involves engaging with life in positive, healthy ways as well as enjoying positive mood states. That said, flourishing mental health does not mean that you are happy all the time or that your life is ‘perfect;’ flourishing involves facing life’s ups and downs with hope and resilience.”

The Signs of Languishing

Some of the most common markers of languishing are low motivation, difficulty concentrating, and poor energy, according to Dr. Metzger. It can also affect a person’s appetite and sleep. “Some experience reduced appetite, whereas others tend to overeat to self-soothe,” Manly adds. “Similarly, some experience poor or interrupted sleep, whereas others have hypersomnia (sleep more than usual).”

As Manly points out, languishing encompasses a wide range of experiences, including dysphoric mood states and an ongoing sense of ennui—both of which often result in reduced or no interest in interacting with others socially. Additional signs of languishing include a lack of focus, lack of purpose, disinterest in normally pleasurable activities, and inability to engage in necessary daily life tasks, or feeling “blue,” she adds.

The Key Difference Between Languishing and Depression

Because there’s some overlap in symptoms, at times it can be hard to differentiate between languishing and depression, but there are in fact some clear distinctions. Dr. Metzger likes to use a thermometer analogy. “Languishing is when we’re at zero degrees, neutral—not negative or positive. Depression is when the temperature goes into the negative numbers. These negatives include feelings of hopelessness. Languishing is a feeling of nothing, and depression is a feeling of sadness,” she explains.

And although languishing can involve or become clinical depression, not everyone who experiences languishing meets the criteria for depression, and vice versa. Clinical depression is a disorder outlined in The Diagnostic and Statistical Manual of Mental Disorders (DSM-5), whereas languishing is not. “In general mental health terms, depression would be viewed as a clinical diagnosis, whereas languishing might be viewed more as a failure to thrive,” Manly says.

A Lot of People Are Languishing Right Now

If it seems like you’ve been hearing a lot about languishing lately—specifically, over the past two years—it’s not your imagination. “The combination of the social isolation, grief, and fear of the pandemic has brought languishing back into the spotlight,” Dr. Metzger explains. “It’s how many people are responding to the uncertainty and emotional rollercoaster of the past 22 months.”

Along the same lines, Manly notes that languishing can result when ongoing stressors create deep weariness and mental burnout. “Far from being abnormal or ‘lazy,’ those who experience languishing behavior during the pandemic are actually displaying natural responses to the highly stressful, exhausting, and disempowering nature of the pandemic,” she says.

How to Get Through a Period of Languishing

1 Take small, actionable steps forward each day.

Create a list of top priorities—the most important needs—and focus on accomplishing just two or three of them per day. “This might be as simple as taking a 15-minute walk each day to get an exercise routine going, or something more involved, like drafting a new resume or tackling house-cleaning one room at a time,” Manly says.

2 Reward yourself for every positive step forward.

As you complete the small tasks on your list, Manly suggests offering yourself a feel-good reward, like watching 30 minutes of your favorite show in exchange for every 30 minutes of cleaning, focused work, or other accomplishment. “This type of reward system supports the positive, flourishing-oriented mindset that’s so essential for getting unstuck from languishing energy,” she says.

3 Reach out for positive, affirming assistance.

Find a support group or mental health provider. “Avoid the urge to hide your difficulties and challenges,” Manly says. “We all need support when life gets rough.”

4 Identify and incorporate joy into your life.

During periods where you’re feeling nothingness or emptiness, Dr. Metzger suggests consciously identifying what brings you joy, and then making an effort to incorporate it into your life on a regular basis. “Be very intentional in seeking joy,” she advises. “Write down what brings you joy and incorporate it into your weekly routine. It’s the only way to undo the languish by counteracting it with positive emotions.”

5 Connect with people you trust and love.

You may not consider spending time with lots of other people (or certain people) something that brings you true joy—but there’s no doubt that interacting with people in your life who bring you comfort or make you feel relaxed and at-ease can help. “Connect with others to enjoy little bright spots in life such as a movie, cup of coffee, or baking project,” Manly says. “Laughter and friendship can be very good antidotes.”

6 Acknowledge and validate your own experience.

Lastly, if you recognize that you are languishing—and perhaps have been for quite some time—be kind to yourself, and keep in mind that we’ve all been through a lot. “If you are suffering, don’t blame yourself or expect yourself to magically pop out of languishing,” Manly says. “The pandemic has taken a toll on our bodies, minds, and spirits—it’s natural to feel quite low after all that has occurred.” Acknowledging how you feel (or how you don’t feel) doesn’t signal that you’ve given up; awareness is actually a big first step toward making positive moves forward.

Complete Article ↪HERE↩!

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Black Grief Practitioners Are Protecting Black Life In Death

Like so many other injustices, the pandemic has only magnified the problems Black people face in the death and dying space. These women are working to solve them.

By Stephanie Long

The hands of a death doula surrounded by vines and flowers

Joél Simone Anthony is in her mother’s sunlit living room in Beaufort, South Carolina. She’s wearing a black long-sleeved mock neck shirt with a fresh twist out, a bold red lip, and large silver earrings that jangle like windchimes. “I live in Atlanta, Georgia, but I’m getting married and my mom had surgery, so I’m actually here taking care of her and planning my wedding and everything,” she warmly shares with me over Google Meet.

There’s something about Anthony — a full-time sacred grief practitioner — and her amenity that strikes me at that moment. Perhaps it’s because one wouldn’t expect a person whose business moniker is The Grave Woman to be so rosy; one of the misconceptions people have of those who work in the death and dying space is that the work has to be sad, she shares later in our exchange. But it’s also clear to me early on in our conversation that working as a licensed funeral director and sacred grief practitioner is more than a profession for Anthony — it’s her calling.

“Let me just start off by saying that this is something my ancestors literally gave me a title for in 2020,” she says when I ask her to describe what a sacred grief practitioner does. Her work inside funeral homes — which she had been doing for almost 10 years — was transitioning to teaching online courses amidst the pandemic. Unsure of what direction she was moving in, she went into prayer and meditation about what to call herself. “The ancestors spoke to me [and said] that the name for [what I was doing] was sacred grief practitioner,” she says.

This spiritual calling is indicative of the relationship that Black folx have with death and dying. While death is considered a taboo topic to some, it’s celebrated as a moment of joy in many Black communities — a homegoing in which those who have transitioned no longer have to endure the earthly troubles of the world. “It’s a celebration of the fact that the person who’s passed away, their spirit is now able to return to their homeland, which is tied very deeply to our history with slavery,” Anthony explains. “Those that were celebrating, or allowed to celebrate, the lives of their loved ones through funeralization did not see this place as their home. They weren’t just celebrating the fact that someone passed away like our European captors were doing; we were celebrating the fact that our ancestors or our loved ones’ spirits were now able to return home.”

When it comes to death and dying, I think that people think that the playing field is equal. People really believe in their hearts that all the bullsh*t ends in death. It doesn’t.
Joél simone anthony

This history is deeply embedded in Anthony’s work. Her home, Beaufort County’s Port Royal Sound, is where just about every African-American can trace their ancestors being brought into this country as enslaved people, she says (slave importations occured in Beaufort County between 1730 and 1776). “That alone should set the foundation for what energy resonates in this place.” It is also home to Gullah and Geechee culture, which has ties to Central and West Africa, in which death is regarded as a rite of passage through which a spirit transitions into the next realm. Funeral directors like Anthony have been instrumental in preserving Black homegoings. During these ceremonies, bodies are typically viewed in an open casket that’s been decorated with a lush presentation of flowers and other decorations. Limousines will often escort families to homegoing services. It’s a moment of mourning, but it’s also one of pride. “To give a peaceful, celebratory homegoing, it’s the whole idea of a celebration of life,” Karla F.C. Holloway, a professor of English, law, and African American studies at Duke University, told The Atlantic in 2016. “It is a contradiction to the ways in which many Black bodies come to die.”

The face of a spirit in transition resting on a bed of vines and flowers

Creating this contradiction has become central to many Black people working in the death and dying industry, and why it’s become increasingly important to decolonize it. During the summer of 2020, Going With Grace founder Alua Arthur hosted Sayin’ It Louder, a panel discussion (including Arthur, Anthony, and other Black grief practitioners: Alica Forneret, Naomi Edmonson, Oceana Sawyer, and Lashanna Williams) about being Black in the death and dying industry during the time of COVID. George Floyd had just been murdered, and there was a conversation happening regarding how to “confront racism disguised as implicit bias that exists against Black workers, Black deceased people, and patrons of their families.” There was also a call to create an accessible and centralized database of grief resources for Black people.

“We had a lot of interest. I think about 7500 people signed up, but what I found more fascinating about that was that, prior to that time, I was the most visible Black person in death and dying,” says Arthur, who also has experience as a death doula, a person who manages the non-medical care and support of a dying person and their family. “People would call Going With Grace and be like, ‘Is this the Black Death Doula?’ or ‘You’re Black, right?’ These are people that wanted a Black person to be with them.”

Like so many other injustices, the pandemic has only magnified the problems Black people face in the death and dying space. “The inequities in the way we live and die could not have become more apparent during this time, coupling both the pandemic and social movements we’ve witnessed in the last two years,” says Alica Forneret, grief consultant and founder of PAUSE, an organization focused on creating spaces that produce safe, culturally-specific, and expert-informed grief and end of life resources serving for Black and brown communities. “Starting PAUSE felt timely, important, and urgent.” she continues. “What I want above anything in this work is for people to feel like they aren’t alone in death OR in the processing of a death that’s happened in their community. To me, the way to ensure that is access to education, culturally relevant resources, and people who will guide us through the inevitable end with compassion, patience, and attention to our unique needs.”

Space is now being created for people that fit outside the dominant culture to have access to people, to support them through death and dying. I want to keep that going as long and as far as I can.
Alua Arthur

The death and dying space has historically been a largely white industry, says Arthur. This is reflected in both the visibility of Black and brown folks working within it and the training resources that are available to those who want to join.”When it comes to death and dying, I think that people think that the playing field is equal. People really believe in their hearts that all the bullsh*t ends in death. It doesn’t,” says Anthony, who has witnessed the mistreatment and mishandling of Black bodies inside funeral homes, whether due to ignorance or blatant carelessness. This is also why spaces like Arthur’s Going With Grace, a death doula training and end-of-life planning organization, are so necessary. “When I went to other training programs, I was sitting with a bunch of white folx. But in the last three years since the training program has been up and running, a big portion of our courses are people of color, women of color, people who are trans and non-binary and queer,” says Arthur. “Space is now being created for people that fit outside the dominant culture to have access to people, to support them through death and dying. I want to keep that going as long and as far as I can.”

In addition to training programs run by Black folx creating space for the marginalized to flourish within the industry, it also ensures that postmortem care is thoughtful and inclusive. “I can remember working in a funeral home and going into the embalming room where people are cared for, and a licensed professional who was training me was cutting a Black woman’s box braids out from her scalp,” Anthony recalls. “[He isn’t] thinking that he’s doing anything wrong, not doing it maliciously. The family told him they wanted the braids out, but [he] simply did not understand that her hair is intertwined in these braids that he’s cutting out.” Anthony was grateful she walked in the moment she did and was able to stop him, but situations like this are prime examples of why more standardized education that includes Black and brown folx is needed in this space. ”If it were a white woman, you would understand that you have to shampoo her hair and brush her hair a certain way. Why is that? Why is this something that you were not taught as a licensed professional?”

Vines and flowers

Around the same time as Sayin’ It Louder, Anthony and her mentor Anita Pollard Grant — a registered nurse and licensed mortician — released a Racism in Death Care course. “All of the praise and all of the accolades that we’re receiving for having these conversations as Black women is wonderful, but will this support exist a year from now?” she says, echoing her sentiments from the panel. “I feel the conversations being had by people that look like me have been happening and need to happen; however, in some ways, the energy is different,” she continues. “The timing was right for the conversation and for the projects built around it. But I don’t feel like the conversation needs to end because there’s no more media coverage on what’s happening to Black and brown people.”

Continuing the conversation of equity in the death and dying space is something that Arthur also feels very strongly about and hopes to see change. “I’m also grateful that you’re writing this piece,” she tells me. “I hope that what happens is that we’re able to continue to diversify the voices of Black people and [death] care.”

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Mary-Frances O’Connor Recommends Readings for the Grieving Brain

The Psychologist and Author Shares Her Picks for
Understanding Life’s Lows

By Mary-Frances O’Connor< In The Grieving Brain: The Surprising Science of How We Learn from Love and Loss, I make a distinction between “grief” and “grieving.” Grief is the wave that knocks you off your feet and surprises you with both its ferocity and its strangeness, nothing like the simple sadness that we might have expected. But having authors who have depicted their excruciating experience for us makes us feel less alone, or at least more normal, and thus these books are invaluable. Grieving, on the other hand, is how the feeling of grief changes over time without ever going away. Grieving is the process when we come to discover that we must carry grief with us, carry on with the grief in tow, while somehow restoring a meaningful life. We are not alone in this either, because creating a meaningful life is a never-ending process; learning how other authors have done it—reflecting on their philosophy—connects us all in this universal human trademark experience.

It's OK That You're Not OK

Megan Devine, It’s OK That You’re Not OK: Meeting Grief and Loss in a Culture That Doesn’t Understand

Recently, a dear friend has been grieving the death of his mother, has been distant and avoiding our circle of friends, and has erupted in anger at seemingly minor moments. I recognize his path, walking through the dark night of loss. For him, and for others acutely grieving or struggling over time, I recommend Megan Devine’s fantastic account of how to avoid the “tyranny of positive thinking” that many bereaved people are confronted with. She explains why words of comfort can sound so bad and enables me to invite my dear friend to share with me what it feels like to be him, living inside grief.

Year of Magical Thinking

Joan Didion, The Year of Magical Thinking

Joan Didion’s story of not being able to throw out her husband’s shoes after he died because he would need them again may have been my first inkling that the brain can really be drawing on two different sources of information at the same time, even if they conflict. Through Didion’s honesty and courage about her own grief experience, she reveals the lived experience that led me to develop the gone-but-also-everlasting theory: when we bond with a loved one, that bond is encoded in the brain with the incontrovertible belief that our one-and-only will always be there. This conflicts with the memory of their funeral, with their absence at breakfast, lunch, and dinner. As a neuroscientist, Didion’s brilliant writing made me understand magical thinking is not to be ignored as the ravings of grief but could reflect exactly how the brain processes the world.Man's Search

Viktor Frankl, Man’s Search for Meaning

My mother died when I was training to become a psychologist and, in the wake, I sought out a clinical practicum working with terminally ill prison inmates. Perhaps because my scale for what “awful” felt like had been completely rescaled? In any case, I did not have the training to work with the life-sentence, unable-to-speak-from-throat-cancer inmate I counseled for several months before his death. And so, I read Viktor Frankl’s writing about his experience in a Holocaust concentration camp, thus shaping my understanding that when the worst possible thing is happening, you can find meaning. Or at least you can go on…because they did. And there is beauty in that connection, which helps you go a little further.

Hold Me Tight

Sue Johnson, Hold Me Tight: Seven Conversations for a Lifetime of Love

To understand grief, you must first understand bonding, since you cannot know what has been lost unless you understand what it was you had. And if you ever hope to restore a life full of loved ones, knowing how to build them is key. There is no better insight into close relationships than the work of Sue Johnson. Even as a clinical psychologist, this book helped me to understand my relationships, past and present, more deeply and clearly than I ever had before.

How to Live Good Life

Massimo Pigliucci, Skye Cleary, & Daniel Kaufman, How to Live a Good Life: A Guide to Choosing Your Personal Philosophy

With a name like mine, it will come as no surprise that I was raised Catholic. After my father died, I thought a lot about how he had created a meaningful life and the relationship between his faith and his actions in this world. Although I spent years engaged in Quakerism and then Buddhism, I had never settled into a faith community. In my quest to discover the philosophic or religious views that resonated with my own, I found the collection of short essays by Pigliucci, Cleary, and Kaufman to be a valuable guide, offering me new insights into classical religions and introducing me to new philosophies such as effective altruism.

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The Grieving Brain

Mary-Frances O’Connor’s book, The Grieving Brain: The Surprising Science of How We Learn from Love and Loss is forthcoming in February 2022 from HarperOne.

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The Burden of the Black Mother

Members of the “Mothers of the Movement,” who are mothers of victims of police shootings, in July 2016.

By

As soon as Mamie Till-Mobley, then Mamie Till, learned of her son’s torture and murder, she got to writing. There was work to be done, a need to understand every detail, a responsibility greater than her own healing. Her memoir — she did not live to witness its publication some 50 years later — reflects, “Emmett was dead. They had pulled his body from the Tallahatchie River … weighted down by a heavy gin fan tied around his neck with barbed wire … I had to get everything down … I was the one who was going to have to explain to people.”

The ritual of a Black mother’s public grief after her child is stolen from this Earth is an American obsession, however numbing. It’s tradition to focus on watching what this Black mother does and what that Black mother says, not because we care for her — we’re focused because we care about what she can do for the rest of us.

Till-Mobley’s instinct wasn’t wrong. She wasn’t imagining more pressure for herself than what was foisted on her; instead, she vocalized Black mothers’ most conflicting internal monologue, the one where we’re conditioned as selfless beings told to withstand more than the rest, represented not as mothers of our own children but mothers of movements and a nation. Within moments of learning their baby is gone, their worst nightmare realized, they are asked to comment, to mourn publicly but to do so with restraint, to impart some kind of hopeful message or motivation, to provide a call to action, to do something, anything, larger with their pain than to grieve.

Nearly six decades after Till-Mobley started writing, Sybrina Fulton found herself in similar circumstances, sitting in court identifying her child’s screams in the background of a recorded 911 call. Fulton was thrust into the spotlight in the most tragic way. She would later say, “At first, I didn’t want to be the voice for Trayvon after he died, but I decided I have no choice. Now, I’m called to act and called to serve.”

She did not stand alone with this burden. Fulton, Lezley McSpadden (Michael Brown’s mother), and Lucy McBath (Jordan Davis’s mother) all translated their worst personal traumas into tangible political and civic action. Not only was each asked to calm her raging community by speaking to crowds while at her own loss for words, all three ran for office to try to find justice for their children. McBath won her race for Congress; Fulton’s and McSpadden’s efforts came up as short as the system that had failed their sons. Where they were willing to do everything in their limited power to recover from this great American debt, they did not receive that backing in return.

The problem with seeing Black mothers as an endless energy source, both in the home and on the world stage, is that it conflates all their sacrifices with superhuman strength. Their every decision becomes one made on behalf of Black people and on behalf of the entire Republic, instead of part of their own restoration. We prioritize our needs over theirs, assuming they can forgo their own. Absolve a country from having to reckon with its own harm-doing, and it’ll turn the responsibility back on these mothers for their loss. And when they ask for help with these pressures, it is rare for such needs to be met.

Black mothers’ uncompromising stance that their tragedies not be taken in vain has shaped much of our history. Till-Mobley’s demand that Emmett’s casket be left open at his funeral propelled the civil-rights movement forward. However, it has grown too heavy for one body to carry a fight that requires us all. It’s time to mother our Black mothers for a change.

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Experts warn of the increasing overmedicalization of death, call for rethink of how society cares for dying people

Health and social systems around the world are failing to give appropriate, compassionate care to people who are dying and their families. According to a new Lancet Commission, today’s current overemphasis on aggressive treatments to prolong life, vast global inequities in palliative care access, and high end-of-life medical costs have lead millions of people to suffer unnecessarily at the end of life.

The Commission calls for public attitudes to and dying to be rebalanced, away from a narrow, medicalised approach towards a compassionate community model, where communities and families work with health and to care for people dying.

Bringing together experts in health and social care, , economics, philosophy, political science, theology, community work, as well as patient and community activists, the Commission has analysed how societies around the world perceive death and care for people dying, providing recommendations to policy makers, governments, civil society, and health and social care systems.

“The COVID-19 pandemic has seen many people die the ultimate medicalised death, often alone but for masked staff in hospitals and intensive care units, unable to communicate with their families, except digitally”, says Dr. Libby Sallnow, palliative medicine consultant and honorary senior clinical lecturer at St Christopher’s Hospice and UCL (UK) and co-Chair of the Commission, “How people die has changed dramatically over the past 60 years, from a family event with occasional medical support, to a medical event with limited family support. A fundamental rethink is needed in how we care for the dying, our expectations around death, and the changes required in society to rebalance our relationship with death.”

The Commission focuses primarily on the time from when a person is diagnosed with a life-limiting illness or injury, to their death and the bereavement affecting the lives of those left behind—it does not cover sudden or , deaths of children, or deaths due to injustice.

Death and dying have become over-medicalised, hidden away and feared

Over the past 60 years, dying has moved from the family and community setting to become primarily the concern of health systems. In the UK for example, only one in five people who require care are at home, while about half are in hospital (table 2).

Global life expectancy has risen steadily from 66.8 years in 2000 to 73.4 years in 2019. But, as people are living longer, they are living more of these additional years in poor health, with years lived with disability increasing from 8.6 years in 2000 to 10 years in 2019.

Prior to the 1950s, deaths were predominantly a result of acute disease or injury, with low involvement from doctors or technology. Today, the majority of deaths are from chronic disease, with a high level of involvement from doctors and technology. The idea that death can be defeated is further fuelled by advances in science and technology, which has also accelerated the over-reliance on medical interventions at the end of life.

And, as healthcare has moved centre stage, families and communities have been increasingly alienated. The language, knowledge, and confidence to support and manage dying have been slowly lost, further fuelling a dependence on health systems. Despite this, rather than being viewed as a professional responsibility for the doctor, and a right for all people and families who wish it, conversations about death and dying can be difficult and uncomfortable and too often happen in times of crisis. Often they don’t happen at all.

“We will all die. Death is not only or, even, always a medical event. Death is always a social, physical, psychological and spiritual event and when we understand it as such we more rightly value each participant in the drama,” adds Commission co-author, Mpho Tutu van Furth, priest, Amstelveen, Netherlands.

Worldwide, too many people are dying a bad death

While palliative care has gained attention as a specialty, over half of all deaths happen without palliative care or pain relief, and health and social inequalities persist in death.

Interventions often continue to the last days with minimal attention to suffering. Medical culture, fear of litigation, and financial incentives also contribute to overtreatment at the end of life, further fuelling institutional deaths and the sense that professionals must manage death.

Dr Libby Sallnow and Dr M.R. Rajagopal call for radical rethink of how society cares for dying people. Today’s current overemphasis on aggressive treatments to prolong life, vast global inequities in palliative care access, and high end-of-life medical costs have lead millions of people to suffer unnecessarily at the end of life. The Lancet Commission on the Value of Death provides recommendations to policy makers, governments, civil society, and health and social care systems. Credit: The Lancet

Untreated suffering, vast inequalities, and aggressive medical treatments have come at a high cost. A disproportionate share of the total annual expenditure in high income countries goes towards treatment for those who die, suggesting that treatments at the end of life are being provided at a much higher threshold than for other treatments.

In high income countries, between 8% and 11.2% of annual health expenditure for the entire population is on the less than 1% who die that year (table 6). Care in the last month of life is costly and, in countries without universal health coverage, can be a cause of families falling into poverty.

“Dying is part of life, but has become invisible, and anxiety about death and dying appears to have increased. Our current systems have increased both undertreatment and overtreatment at the end of life, reduced dignity, increased suffering and enabled a poor use of resources. Healthcare services have become the custodians of death, and a fundamental rebalance in society is needed to re-imagine our relationship with death,” says Dr. Richard Smith, co-Chair of the Commission.

A fundamental change to society’s care for the dying is needed

The Commission sets out five principles of a new vision for death and dying:

1. The social determinants of death, dying and grieving must be tackled, to enable people to lead healthier lives and die more equitable deaths.

2. Dying must be understood to be a relational and spiritual process rather than simply a physiological event, meaning that relationships based on connection and compassion are prioritised and made central to the care and support of people dying or grieving.

3. Networks of care for people dying, caring, and grieving must include families, wider community members alongside professionals.

4. Conversations and stories about everyday death, dying, and grief must be encouraged to facilitate wider public conversations, debate, and actions.

5. Death must be recognised as having value. “Without death, every birth would be a tragedy.”

The Commission recognises that small changes are underway—from models of community action to discuss death, national policy changes to support bereavement, or hospitals working in partnership with families. While wholescale change will take time, the Commission points to the example of Kerala, India, where over the past three decades, death and dying have been reclaimed as a social concern and responsibility through a broad social movement comprised of tens of thousands of volunteers complemented by changes to political, legal, and health systems.

“Caring for the dying really involves infusing meaning into the time left. It is a time for achieving physical comfort; for coming to acceptance and making peace with oneself; for many hugs; for repairing broken bridges of relationships and for building new ones. It is a time for giving love and receiving love, with dignity. Respectful palliative care facilitates this. But it can be achieved only with broad-based community awareness and action to change the status quo,” says co-author Dr. M.R. Rajagopal, Pallium India, India.

To achieve the widespread changes needed, the Commission sets out key recommendations for policy makers, health and social care systems, civil society, and communities, which include:

  • Education on death, dying, and end of life care should be essential for people at the end of life, their families and health and professionals.
  • Increasing access to pain relief at the end of life must be a global priority, and the management of suffering should sit alongside the extension of life as a research and care priority.
  • Conversations and stories about everyday death, dying, and grief must be encouraged.
  • Networks of care must lead support for people dying, caring, and grieving.
  • Patients and their families should be provided with clear information about the uncertainties as well as the potential benefits, risks, and harms of interventions in potentially life-limiting illness to enable more informed decisions.
  • Governments should create and promote policies to support informal carers and paid compassionate or bereavement leave in all countries.

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