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When death becomes you

— My journey towards becoming a death doula

Dana Purdom taps into her deep intuition to find her calling as a death doula.

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When I was as young as four years old, my mother would send me to my grandparents’ home to stay during the summer months. I was this little girl, neatly coiffed, dressed impeccably, and placed on a plane to fly across many states to Leakesville, Mississippi. I was a quiet and reserved child, and shy, which, I believe, others perceived as timidity and an inability to fit in. But I knew this was not true.

I was deeply intuitive, sensing, empathetic, and feeling all things around me. I wasn’t quiet. I was observant. I wasn’t shy. I was curiously aware. I wasn’t timid or unable to blend in. I was simply different. And this made others uncomfortable in ways I couldn’t name or remedy at such a tender age. So I shrank into myself and sat quietly as I watched others – aunts and uncles, cousins, friends – live their lives out loud. The only people I felt understood and knew me were my grandparents. They had a way of communicating, seeing and loving me in ways I can only attribute to them also being intuitive.

During those summers. I spent hours wandering in the fields and deep woods, exploring and communing with nature. I heard the sounds of animals moving from one place to another, giving instructions of where they were headed next. I would listen to the trees, the leaves and the brush as they sang, sending messages to one another of what season it was, and whether or not to bend and stretch when the breath of God blew on them.

And though these times were glorious, expansive, and faith-forming for me – instilling a sense of other-worldly trust and peace – there were moments of fear of the unknown, of otherworldly happenings that I couldn’t explain.

At times, asleep in the back room of my grandparent’s home, I would be overcome by a weighted feeling, making it difficult to breathe. Subconsciously, I was taken to a deep, dark, unknown place. No matter how hard I fought – to get away, to breathe, to scream – it was pointless, as the grip on me was too great to overcome.

“The witch was riding you,” a family member told me.

Whenever this happened, it would physically feel as if I was experiencing death, or the dying process. First: asphyxiation, immobility and panic would set it in because somehow, even in this state of paralysis, I knew death was imminent. And then, an unwavering calm, a gentle peace, a release or surrender to the unknown would take over, shortly after the “witch riding my back” dismounted and the paralysis ended.

These moments are what I understand to be my induction into the mystical world of death and dying. As these moments continued to happen over the years while visiting my grandparents, I began to intimately connect with the peaceful surrender of death. It no longer frightened me, but instead, drew me closer. I wanted to know more about what I was experiencing and the visions I saw. I wanted to know more about death and its transcendental relation to the beyond.

Early on, I couldn’t comprehend my curiosity about death or why these experiences happened to me. But I’ve come to understand this mystical phenomenon as a gift, a blessing and a means to serve others by becoming a death doula.

A culturally spiritual call

We live in a death-denying culture. But because of my childhood, the draw of the witch that was riding my back, and my growing intimacy with death, my curiosity grew into a deep passion: what happens, I wondered, when a physical body is no longer present in the natural world and has returned to its original form as a spirit, transitioning into its next phase of life?

For me, death is never ending; it is a transition from one life-form to the next. I am a soul cultivator, one who seeks to hear the heart of others, beyond the words they speak, desiring to reflect back to them the love, care, and peace they long for in their lives. If they never received this type of care in life, if I can give that to them in death, I will have lived fully into my call of “doing the work my soul must have,” as theologian Katie Geneva Cannon challenges each of us to do.

For me, death is never ending; it is a transition from one life-form to the next.

Like a midwife who assists in the process of birthing, a death doula “guides a person who is transitioning to death and their loved ones through the dying process,” according to the International End-of-Life Doula Association. Death doulas have existed as long as death itself; culturally, however, Black death doulas have specifically answered the spiritual call between Black people and their tormented, historical relationship to death and dying. This became more pronounced during the COVID-19 pandemic and the growth of social movements focusing on Black and brown lives — and deaths.

“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,” according to grief consultant Alica Forneret in a story on refinery29.com. Forneret also is the founder of PAUSE, which creates culturally specific spaces that provide end-of-life resources and grief support.

Nikki Giovanni once said, “death is a slave’s freedom.” Black people’s history with colonized culture has demanded that the care and personal needs of its own community regarding death and dying be met in ways that greater society doesn’t recognize.

“God’s salvation is a liberating event,” James Cone wrote in his book, The Cross and the Lynching Tree, “in the lives of all who are struggling for survival and dignity in a world bent on denying their humanity.”

New rhetorics of lynching and continual perpetuation of Black tropes dehumanize and distort one’s humanity in death. These are primary reasons why Black culture, by restoring power and dignity to the dead, has taken personal agency in God’s vision for humanity. Black funerals, therefore, are celebrations that honor the life that was lived on this side of eternity, and they rejoice in the transition into the next.

And this was what our ancestors did in remote, secret places: they practiced sacred religious traditions because they were prohibited from performing funerals or any traditions that commemorated the dead. Black funerals were once one of the only spaces not permeated with Whiteness, where we could live into our traditions in our own sacred ways.

And so, more and more Black people, by becoming or by employing death doulas, are seeking to protect the knowledge that not only Black lives matter, but also Black deaths.

Black ancestry has taught us to acknowledge death as a moment of joy, to celebrate the transition from pain and suffering in this world, to that of being in the arms of their Creator, where they will walk around heaven all day, as the song goes. Funerals, for instance, are called “homegoing services,” and are outpourings of both joy and grief. Helping the dying do so in dignity while remembering and honoring ancestral traditions, and ensuring that the family of the dying person is nurtured, became the impetus that moved me in the direction of becoming a death doula.

Black ancestry has taught us to acknowledge death as a moment of joy, to celebrate the transition from pain and suffering in this world, to that of being in the arms of their Creator.

While there are currently no licensure requirements to become a death doula, organizations exist to provide death doula certification and training. Going With Grace (goingwithgrace.com) offers death doula/end-of-life training “steeped in ancient wisdom traditions adapted to modern times” and prepares individuals to take the National End-of-Life Doula (NEDA) proficiency assessment. Passing this curriculum exam, according to the NEDA website, earns the doulas a badge that assures them and the families they assist that the doula has competencies and knowledge around, among other things, spirituality, the dying process, non-medical care and comfort, and grief, and that their understanding of these areas aligns with those of others in the field.

Being a death doula differs from chaplaincy and hospice care. While death doulas do not provide medical care, they do collaborate with hospice programs, bridging the gaps and strengthening the relationships between medical and non-medical support, as noted on cremationassistance.org. Hospice care is regulated by Medicare rules, which limits caregivers’ interactions with patients and families. Death doulas bridge this gap by showing up in the following ways: grief support, advance health care planning, end of life planning, practical training for family caregivers, funeral/memorial planning assistance, needed relief for family caregivers, companionship to patients, vigil presence for actively dying patients and more, as every death doula is different and has their own specialties they provide.

And while chaplains also do this work, there are differences between chaplaincy and being a death doula: education, training, certification, and ways of making meaning of a person’s experience of sickness, death, and dying. Chaplaincy is not only shaped by one’s own religious tradition but also the extensive religious and philosophical studies completed during graduate school. Death doulas have more flexibility in their practice. Doulas are able to serve as many or as few clients as they wish to serve at a time, whereas chaplains are limited to serving those within the institutions where they are employed. And death doulas are independent contractors charging an hourly rate or setting a flat fee, but services are not covered by insurance, Medicare or Medicaid.

A death doula can also help relieve the burden of improper or confusing end-of-life planning, and support family members who are responsible for completing their loved one’s affairs. You can find a death doula by checking registries that are available in individual states.

Death should not be a taboo topic

We live in a death-denying culture, where the discourse surrounding death is taboo, and we don’t want to accept that we live in a finite world. We shun people who talk about death, especially those people who may be living terminal lives. We do this as a means of self-preservation, not wanting to be exposed as being vulnerable or appearing weak for expressing emotion. I believe that if we talk about death and dying more, in constructive and life-giving ways, and with the support of a person like a death doula, the topic will become less taboo.

I recognize I have a unique perspective concerning death and dying. Death is inevitable, and neither humans, nor any of creation, were meant to live forever. I believe we are spiritual beings, having a human experience. And as I was writing this article, the song “Take Me to the Water (to be baptized)” by Nina Simone dropped in my spirit.

In death, we are reminded of our ‘maternal baptism’: dying to the spiritual realm from which we came and, born to life in the maternal waters of the womb, becoming the physical beings we were created to be. In baptism, we see the death and resurrection of Christ as well as our own. Though, in baptism, we are “not actually dead, placed in the tomb, and brought back to life …” the sacrament re-members us to Christ’s passion, giving us new life in Christ (Cyril of Jerusalem).

If we allow this consideration of baptismal grace being the death and life of a soul, then death becomes a return to the waters that once birthed us. No longer physically present in the earthly realm, and yet, still present as spirit.

Like other injustices, this “holy disruption” of a pandemic “has magnified the problems Black people face in the death and dying space,” says Alua Arthur of Going With Grace.

By dispelling myths regarding death, through curating soft landing spaces for mind shifts to occur, while holistically supporting those in the midst of experiencing death, I aim to become a change-agent in the death doula industry — re-writing the narrative of what Black death is and how beautifully sacred the dying process can be.

“When death comes to find you, may it find you alive.” — African Proverb

Complete Article ↪HERE↩!

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Black Christian patients are less likely to receive their preferred end-of-life care.

— Researchers hope change that. 

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Researchers from the University of Alabama at Birmingham published a paper in the Journal of Racial and Ethnic Health Disparities demonstrating the importance of respecting the deeply held beliefs of African American Christians to help provide equitable, goal-concordant end-of-life care to these patients.

There are two schools of thought among clinicians at end of life: aggressive care, which focuses on treating the illness or condition, and supportive care, which focuses on pain and symptom management.

In this publication, researchers demonstrated how the term aggressive care — used loosely by clinicians to describe care that can negatively impact quality of life for patients with serious illness — is often used to inappropriately label the preferences of African American patients.

“Our motivation through this article was to bring in not only the perspectives of African American Christians, but also to share the biblical and historical backdrop that can be instrumental in shaping their serious illness and end-of-life wishes,” said Shena Gazaway, Ph.D., assistant professor in the UAB School of Nursing and lead author of the study. “In collaboration with our wonderful medical colleagues, we wanted to acknowledge the origins of aggression and discuss how the labeling of care as aggressive with patients and their families can negatively impact care conversations.”

For patients with serious illness such as advanced cancer, dementia and terminal illnesses, the term aggressive care is used to describe courses of treatment that could potentially cause increased physical distress and psychological stress and a decreased likelihood of experiencing a “good death.” The Institute of Medicine defines a good death as “one that is free from avoidable death and suffering for patients, families and caregivers in general accordance with the patients’ and families’ wishes.”

“The data is clear — a larger proportion of African American families reported that their loved one did not receive care that is in accord with what they requested in the final days of their life,” said Ronit Elk, Ph.D., associate director for the UAB Center for Palliative and Supportive Care, and professor in the UAB Division of Geriatrics, Gerontology and Palliative Care and co-author. “We hope this article provides a careful explanation of why these values are so important to the African American Christian community and will strike a chord in many clinicians about the importance of respecting these values and not dismissing the beliefs that these patients and their families about hope and the miracles of God.”

In this article, researchers discuss how many Black Christian adults share a belief in miracles that shapes their end-of-life care decisions. The article states that this belief in miracles combined with an overall distrust in the health care system — due to a history of medical experimentation and centuries of health care disparities — have led many African Americans to depend on their belief in God’s healing power to perform miracles and heal family members who are seriously ill.

The UAB Center for Palliative and Supportive Care offers the African American Communities Speak program to clinicians. This skills-based training incorporates videos created by the African American community to train clinicians on the community’s cultural values, lived experiences and recommendations for care. Self-reflection and active learning techniques provide participants the foundation needed for changed behavior and improved communication with patients and caregivers.

This trust in God, belief in miracles and distrust of clinicians may lead to a seriously ill African American Christian patient to request life-sustaining medical interventions even when recommendations call for supportive care. When facing terminal illness, this hope in miracles often influences the patient’s medical decisions and fuels a desire for life-sustaining interventions. The paper states that these decisions are also rooted in a belief that God ultimately decides the outcome of life, not the health care system. 

Researchers say the key to goal-concordant care is for clinicians to allow these patients to process clinical information through their preferred spiritual lens and to allow them time to have critical conversations with those in their network.

“We are hopeful that clinicians will read this article and take away the importance of religious and cultural belief systems in this particular patient population,” said Moneka Thompson, staff chaplain in the Department of Pastoral Care and co-author. “Specifically, we want everyone to understand how the values and beliefs of this particular population may impact their end-of-life preferences and decision-making. This article is the combined effort of five very different women from quite different backgrounds.  Our collective goal was to create a think-piece towards movement of health care for this population in a meaningful and more equitable direction. At the end of the day, we want to support health care equity as much as possible.”

Thompson says that there are a few steps clinicians can take to help ensure they are providing goal-concordant care to their patients.

“First, we encourage clinicians to be aware of their own biases towards this patient population that may fuel incongruent care,” Thompson said. “Second, we hope that clinicians will utilize communication practices that encourage cultural sensitivity, humility and curiosity. Finally, we want clinicians to be fully present to the variety of religious and cultural beliefs that this population will present without feeling the need to obtain this value system for themselves or compromise their own.”

Complete Article ↪HERE↩!

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A researcher’s quest to make end-of-life care more equitable for Black Americans

Black Americans are at greater risk for serious illnesses like dementia and kidney failure, but they’re less likely to receive the kinds of care that can make living and dying with these diseases less painful.

By Leslie Walker, Dan Gorenstein

The four months of care Annie Mae Bullock received for her stage 4 lung cancer were rocky at best. But the final three days of that care, her daughter Karen Bullock said, were excellent.

Annie Mae spent those few days in hospice care at home surrounded by loved ones singing, chanting and praying as she passed.

“We did all of the things we knew she would have wanted us to do,” Karen Bullock said. “And we didn’t have to worry about whether we were being judged.”

That was one of the few times during those hard four months that Bullock and her family hadn’t felt judged. They felt judged when Annie Mae initially declined chemotherapy and later on, when she asked why she needed a legal document outlining her end-of-life wishes.

Bullock is grateful that her mother had those days at home in hospice. She knows many Black families don’t get them.

Research shows that, for seriously ill patients, high-quality supports like advance care planning, hospice and palliative care can alleviate suffering for them – and their families. Benefits include reduced pain and emotional distress, and fewer unwanted interventions.

But Black patients, who are at greater risk for many serious illnesses, are less likely to receive these supports than White patients. For example, just 35 percent of Black seniors eligible for hospice care through Medicare actually receive it, compared to 50 percent of White Medicare beneficiaries.

A lonely road

This is a world Bullock has personal and professional experience navigating. She is a licensed clinical social worker and professor at the Boston College School of Social Work. And for the last two decades, Bullock has been studying why seriously ill Black patients – with incurable conditions like cancer or kidney failure – are less likely to get palliative care, and what it would take to change that.

“In retrospect, seeing that my mother could actually die well is what set me on this journey,” Bullock said.

She has struggled to find funding for her work, told repeatedly to focus on other topics or use data sets that already exist.

“But the large data sets don’t answer the questions that have not yet been asked,” Bullock said.

Through two decades of persistence amassing small studies and focus groups, and the work of others, Bullock has identified some of the barriers. The two biggest, she said, are the failure of the U.S. health care system to build trust with Black families and a lack of culturally competent care.

A system that can’t be trusted in life or in death 

America’s legacy of racism runs deep throughout its health care system, shaping the care Black patients receive and the medical decisions they make – including at the end of life, according to Bullock.

She recalled conversations with Black seniors who remember when their local hospital was segregated or when their communities were targeted with toxic waste sites.

“It’s difficult to convince someone that there is a team of people who want you to die well, when nobody cared if you lived well,” Bullock said.

Racial bias still exists in health care today. Nearly 1 in 3 Black adults in a recent survey said they had been treated poorly by a health care provider because of their race or ethnicity. More than 20 studies document that seriously ill Black patients are less likely to have their pain properly treated, diagnosed or managed.

Bullock said it is a rational decision for people to reject services from a system that has not proven trustworthy.

A culturally incongruent model of care

Bullock has focused a lot of her work on hospice – the kind of end-of-life care that benefitted her own mom. It often happens at home and is free of aggressive intervention.

But after studying the care experiences of more than 1,000 older Black adults and caregivers, Bullock came to the conclusion that certain aspects of the hospice care philosophy, which originated in Europe, are what she calls culturally incongruent.

“This is a European model of care that many White people find to be extremely helpful in dying a good death and having their needs met until the end,” Bullock said.

But she points to the spiritual care component of hospice as one common source of incompatibility. Surveys show spirituality plays a much larger role in the lives of Black families, but White hospice workers may not be familiar with those religious traditions and beliefs.

The least ideal time to explain your cultural preferences, said Bullock, is when you are sick or dying.

“When a patient and or family member has to educate you about their culture while they are receiving care, the message you’re sending is, ‘I don’t know anything about you. I haven’t learned to take care of you,’” she said.

A path toward more equitable care for the seriously ill

For years, experts have been calling for greater equity in care for the seriously ill and dying, but the COVID-19 pandemic has brought renewed attention to the issue.

Some experts, including Bullock, are prioritizing collecting better data and diversifying the medical workforce. Others are focused on expanding access to palliative care, which offers much of the same physical, emotional and spiritual support as hospice without requiring patients to cease aggressive interventions. Research shows Black patients tend to prefer having more intensive treatment options available even at the end of life.

Additional attempts to reduce racial disparities include programs that engage Black churches to reach more patients and those that offer more culturally tailored palliative care. More research is needed to evaluate the effectiveness and scalability of these and other interventions.

Bullock acknowledged working on health care equity can sometimes feel like shouting into a void. On especially hard days she returns to the memory of her mother’s final moments.

As Annie Mae appeared to lose consciousness, Bullock’s family wondered if they should continue their praying and singing and chanting.

It was the hospice social worker who explained the hospice philosophy that hearing is the last sense to go, and gave them a piece of advice Bullock will never forget.

“Continue to say the things you want to say,” the worker urged the Bullock family. “She can hear you even if she can’t respond.”

Complete Article ↪HERE↩!

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Race and ethnicity affect end-of-life care for dementia patients

— More than half of Medicare beneficiaries are diagnosed with dementia during their lifetime and, of those diagnosed who receive intensive end-of-life care, most are from racial and ethnic minority groups, according to a new study.

“While people with dementia received intensive services less often than people without dementia, those with dementia who did receive intensive services were more likely to be from racial or ethnic minoritized groups,” says Elizabeth Luth.

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Intensive treatment includes mechanical ventilation, intubation, feeding tube initiation, and new dialysis.

Researchers have known that race and ethnicity play a role in the intensity of medical care at the end of life, but the difference is more pronounced among individuals with dementia, they say.

“Dementia appears to have a multiplicative effect,” says Elizabeth Luth, an assistant professor in the family medicine and community health department at Rutgers University and lead author of the study published in the Journal of the American Geriatrics Society.

“This difference is not problematic if it reflects patient preferences for intensive services,” says Luth, who is also a faculty member at Rutgers’ Institute for Health, Health Care Policy & Aging Research. “However, additional research is needed to understand whether these differences may be attributable to other factors, including systemic racism, discrimination, poor physician communication, and other barriers to accessing health care.”

To measure the role of race and ethnicity in end-of-life care for people with dementia, Luth and colleagues calculated total medical costs for 463,590 Medicare beneficiaries nationwide. Using claims data, the researchers tallied inpatient, outpatient, carrier, skilled nursing facility, and hospice expenditures for patients’ final 30 days of life. Higher costs indicated greater care intensity.

In addition to determining 51% of Medicare patients die with a dementia diagnosis claim, the researchers made another discovery: Race and ethnicity may influence how people with dementia live out their final days.

“While people with dementia received intensive services less often than people without dementia, those with dementia who did receive intensive services were more likely to be from racial or ethnic minoritized groups,” Luth says.

The magnitude of this effect differed by dementia status. For example, among people without dementia, compared to non-Hispanic Whites, Asian American, and Pacific Islanders had 73% higher odds of intensive care at the end of life. However, among persons with a dementia diagnosis, Asian American and Pacific Islanders had 175% higher odds of receiving intensive procedures.

The findings should prompt efforts to improve end-of-life care and outcomes for people with dementia, Luth says. Medicare reimbursements for physician-led advance care planning conversations could help, she says, as would end-of-life care counseling for all hospitalized patients.

“In the absence of a designated decision maker, the default approach in end-of-life care is to provide intensive services,” Luth says.

“If there isn’t anybody advocating either way, whether it’s the family or the patient themselves, the default is always more hospitalization, which might not be the type of care the patient wants or needs.”

Complete Article ↪HERE↩!

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Why don’t more people of color receive end-of-life care?

People from historically underserved communities don’t just rarely utilize medical aid in dying; they also are less likely to utilize hospice and other palliative care options.

Brandi Alexander is the National Director of Community Engagement for Compassion & Choices.

by Brandi Alexander

Since New Jersey’s “Medical Aid in Dying for the Terminally Ill Act” took effect three years ago, not one Black, Hispanic, Native Hawaiian, Pacific Islander, or Native American state resident has used the law to gently end their suffering.

The question is: Why?

According to state Health Department reports, 89 of the 95 New Jerseyans who have used the law were white (94%), four were Asian, and two were of an unspecified single race. This racial disparity is similar to what’s seen in annual reports in eight of the 10 other jurisdictions that authorize medical aid in dying.

As to why white people are more likely to use this option, some suggest it is because white people mostly are the ones who want it. But that is not true.

A recent national survey showed that 62% of Black voters, 70% of Hispanic/Latino voters, and 65% of voters from all other ethnic groups surveyed would want the option of medical aid in dying if they became terminally ill, compared with 67% of white voters.

Reducing New Jersey’s 15-day waiting period, or waiving it when necessary, would improve access to medical aid in dying statewide. Other states such as California, New Mexico, and Oregon have reduced their waiting period; Oregon also waived its residency requirement. New Jersey should also authorize the state’s share of Medicaid to pay for medical aid in dying, as California, Hawai’i, and Oregon do. After all, New Jersey’s Medicaid program covers hospice care; it also should cover the end-of-life care that patients want, including medical aid in dying.

But these revisions alone would not be enough to reduce the racial gap.

Everyone deserves equal access to all types of end-of-life care.

The reality is people from historically underserved communities don’t just rarely utilize medical aid in dying; they also are less likely to utilize hospice and other palliative care options.

As anyone whose loved one has entered hospice can tell you, it is an invaluable resource, which gives peace and comfort to the dying person, as well as to loved ones.

There are likely a variety of reasons why people of color are not getting this care at the end of their lives. They may tend to prefer aggressive treatments, and may not be offered palliative options, due to institutional racism, cultural and language barriers, lack of access, and economic and insurance hurdles. These facts have been documented by researchers, who found that people of color with end-stage kidney disease were less likely to receive referrals for palliative care than white patients. Other reasons may include mistrust of the health-care system, lack of in-home resources, influences of cultural and religious beliefs, lack of knowledge about available services, and misconceptions about hospice and palliative care.

Indeed, the racial disparities in use of hospice and end-of-life care are consistent with a broad range of racial disparities in the use of health care, as well as health outcomes.

Everyone deserves equal access to all types of end-of-life care. So how do we make that happen?

It will take time, cultural and religious sensitivity (e.g., understanding the importance and impact of faith, spirituality, and culture on end-of-life care decisions in communities of color), and trusted voices to empower and inform diverse communities about the quality-of-life benefits of hospice and palliative care.

Heath-care professionals should initiate conversations with all of their patients, no matter their background, about the importance of discussing their end-of-life care options with their doctors and loved ones, documenting their preferences in writing by completing an advance directive, and appointing a health-care proxy to carry them out if they are unable to speak for themselves. This information can be a source of enormous comfort for terminally ill patients and their loved ones.

Just as we fight for everyone to have equal access to what options people want in life, so too should we fight for equal access to options they want when it comes to death.

Complete Article ↪HERE↩!

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How Black Joy Helps Me and My People Hold Our Collective Grief

In a world where the Black experience is often marred by tragedy and hardship, finding joy is essential.

Choosing to embrace joy can be intentional — even in the face of grief.

By Nneka M. Okona

I know what it means to mourn. I know what it means to look at what was once a life full of joy and levity — only to see heaviness and despair left as the fruits of the harvest of life. Since 2017, I’ve been in a free fall, rattled by loss. In a five-year period, I’ve lost one of my dearest and closest friends from graduate school, two beloved aunts, and my dad.

In five years, I’ve watched my social circles get smaller as grieving made me shrink into a more fearful version of myself, always crouching somewhere safe within my psyche to avoid experiencing the pain of loss, especially sudden loss.

Often people say that grieving is lonely. And it is. When you grieve, whether a person, place, thing, or a state of being, you are actively calling back the love and affection you poured into that person or thing, trying to understand how to extend that care to yourself again.

That is inherently lonely, because it is your relationship that you are mourning; no one else can know the depth or realities of it. No one else can relate to your pain — your grief is yours alone. Grief requires a reordering within of everything you formerly knew about the self attached to that other entity — work that could assuredly take a lifetime.

The Importance of Harnessing Joy When Living With Grief

My grief that I have carried in this period of life, as profound, life-altering, and cataclysmic as it has been, is not unlike the grief that most other Black people have experienced. Whether it’s due to police brutality, the ills of racism in general, or watching our loved ones, friends, and community members die of COVID-19, there is so much to grieve, so much to mourn.

Black collective grief has been at the forefront of my mind in my time of mourning, as are spots and places of joy. We all will have to endure the inevitable heaviness of life; how we harness joy to keep us anchored to this world can act as our guiding light. Our guiding force. A North Star of Joyfulness.

How we harness joy to keep us anchored to this world can act as our guiding light. Our guiding force. A North Star of Joyfulness.

How we harness joy to keep us anchored to this world can act as our guiding light. Our guiding force. A North Star of Joyfulness.

The queer womanist writer and thinker Audre Lorde is known for writing beautifully about self-care and what it means for Black people to care for ourselves in a world anchored in our degradation. In her book A Burst of Light: And Other Essays, she famously writes words that are often repeated: “Caring for myself is not self-indulgence, it is self-preservation, and that is an act of political warfare.”

Self-care and Black joy are linked; one happened to pave the path for the other. Black joy is many things: Black people centering our levity and ease, cultivating and tending to the safe spaces in our lives for support when life becomes perilous, taking a break from the oppression we experience to be present in our lives in other ways, such as by spending time with loved ones and stepping away from social media when news updates are triggering. Black joy is much more than deciding to be happy and to have fun; it is a direct response to us living in this anti-Black world.

It is us saying, “Yes, the violence of white supremacy is draining and exhausting, but there is still much brilliance, vibrance, and vitality within us despite that.” Being Black is not hard — dealing with the external forces of racism is. Black joy is giving ourselves gentleness and compassion and using that to fuel community care a step further. Choosing to embrace joy is intentional, radical subversion in a world that would prefer for us to only find suffering where there can be delight.

Black joy is much more than deciding to be happy and to have fun: It is a direct response to us living in this anti-Black world.

The origin of the term “Black joy” varies depending on whom you ask. The most general assumption is that it originated as a hashtag on social media. The other prevailing thought is that the concept — and the subsequent movement it has become — are the brainchild of Kleaver Cruz, a writer in New York City who identifies as a Black queer Dominican American. In 2015, they started using the phrase online after feeling overwhelmed by the excess of Black death and pain in their sphere. From there, they have built The Black Joy Project, where they show glimpses of joyfulness in Black people online as a reminder of our joy inheritance.

Where and How I Find Joy, Even When That’s Difficult

Cultivating joyfulness for myself personally is often a challenge. When you’re in a prolonged state of mourning like I have been, giving in to that heaviness becomes instinctual. To shake up my energy, I have traveled a lot while mourning, and that has given me a place of spaciousness. Being able to literally transport myself to other places in the world to be reminded of the beauty that exists all around us has been grounding. In this way, joy has become more than just something to turn to, to search for, but a centering of sorts.

My main source of joy, though, has been connection with other Black people — notably via online grief support groups where I can talk openly and honestly about what it means to mourn as a Black person. One of these is a grief group called Black Folks Grieve, led by the grief guide Naomi Edmondson. In these special spaces designed for only Black people grieving, we share our losses, what’s coming up for us, and how we’re creating space to be buoyed in those happy moments that still come.

Sharing and Spreading Joy

Like the grief support groups that have brought me connection and contentment during a time when I felt mostly emotionally unmoored, there are many other individuals and groups creating space and holding space for others, or simply writing their way toward more joy. Of the latter, Tracey Michae’l Lewis-Giggetts wrote about joy and how we can look to it as a means of resistance in her book Black Joy: Stories of Resistance, Resilience, and Restoration. Released earlier this year, her lyrical essays on joy are framed as a beacon of hope and a steady reminder of what we can look to grab from this life, even when it seems out of grasp.

There are joy collectors in our midst, and joy reflectors: those who send up a smoke signal that while this life may be painful and full of things to heal from, things to grieve, we can harness something powerful. Something so pure that when the weight of the world barrages our souls, we can look at one another, and at our strength, love, and joy that are rooted in one another, and declare all to be well.

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Good End-of-Life Care Out of Reach for Many Black Nursing Home Residents

Palliative care can be a godsend in the final days of one’s life, but new research shows that Black and Hispanic nursing home residents are far less likely to receive it than their white peers are.

Overall, nursing homes in the Northeast provided the most palliative care, while those in the South provided the least amount of this type of care.

But in the Northeast and West, the study found, nursing homes that had higher numbers of Black residents provided less of this type of care. In all regions, the more Hispanic residents there were in a nursing home, the fewer palliative care services there were.

“Nursing home racial disparities are pervasive, and Black and Hispanic residents tend to reside in segregated, Medicaid-dependent, financially strained nursing homes, and also nursing homes are really an important end-of-life care setting,” said study first author Leah Estrada. She’s a PhD candidate in the Columbia University School of Nursing.

Prior to the pandemic, about 25% of deaths in the United States happened in nursing homes. In 2020, that number was likely higher, Estrada said. The United States is home to about 52 million adults aged 65 and older, about 1.3 million of which live in a nursing home at any one time. An estimated 56% will eventually need nursing home care, while 21% of residents in nursing homes are Black or Hispanic, the study said.

While Black and Hispanic nursing home residents tend to have poorer health, they are also less likely to get hospice care at the very end of their lives, receive worse pain management and are more likely to undergo aggressive treatment and hospitalization, according to the study.

Palliative care is an essential part of high-quality, end-of-life care, Estrada said. It’s specialized medical care focused on improving quality of life for people with terminal illnesses and is patient-centered and holistic, Estrada said. It might include spiritual and psychological care, as well as easing physical and emotional suffering.

To assess care in different regions, the researchers surveyed 869 nursing homes across the United States, meant to represent the approximately 15,000 nursing homes throughout the country. They studied nursing homes by the concentration of Black and Hispanic residents.

“My hope is that given that palliative care is essential at the end of life, it’s possible that more high-quality palliative care can be the missing link to achieve health equity in nursing homes,” Estrada said.

“Incentivizing some sort of payment options that increase palliative care services, it’s one way that can at least improve care in the nursing home for the residents in a way that is holistic and has been found to be cost-efficient in other mechanisms and settings,” Estrada said.

Vickie Mays is director for the BRITE Center for Science, Research and Policy at UCLA in Los Angeles and was not involved in the study. She said the disparity seen in this study may be a function of lasting differences in insurance and income that started earlier in life.

“You’re more likely to see in racial and ethnic minorities that the kind of insurers near the end of their life are going to be a function of the type of employment and resources they had earlier in their life,” Mays said. Examples include past employment that paid hourly wages and didn’t offer benefits, or not being able to buy long-term care insurance.

“At the end of their lives and when they are utilizing these care facilities, those earlier inequities get played out again later in what it is that they have access to,” Mays explained.

She added that it may be important to think about what the best practices are for end-of-life care. If it’s determined that palliative care is a priority, then standardizing levels of care similar to the way labor and delivery care is standardized for pregnant women and infants could be a solution, Mays said.

“If palliative care makes a difference, it may be that we need to determine that when people reach a certain stage of health deterioration, that they should be in a particular kind of environment in which those services are available,” Mays said. “It’s standardizing levels of care and determining that those levels of care should be there, regardless of whether a person has lots of money or they are being paid for by the federal government.

“One of the things to think about is that sometimes we see a behavior as being, in terms of that particular thing, an inequity, but what we have to think about is could it be prevented if we think about it much earlier,” Mays added.

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