To Die on Her Own Terms, a Connecticut Woman Turns to Vermont

— Connecticut does not allow medical aid in dying, so Lynda Bluestein sued Vermont to take advantage of that state’s law. Now, legislators may make the practice more broadly available.

Lynda Bluestein of Bridgeport, Conn., reached a settlement with Vermont to become the first nonresident with access to its medical aid in dying law.

by Lola Fadulu

Thanksgiving is typically a joyous time for the Bluestein family. Their Bridgeport, Conn., home is filled with laughter, music and even a cooking competition. But last fall, the mood was somber.

“I think next year will be the year that Grandma will die,” Lynda Bluestein, 75, recalled telling her husband, children and grandchildren as they gathered in the living room.

Ms. Bluestein’s 16-year-old twin granddaughters asked if she was scared.

“I’m just happy that I don’t have to suffer endlessly,” she replied.

Ms. Bluestein, who was diagnosed with late-stage fallopian tube cancer, said that if chemotherapy stopped working, she intended to make use of a Vermont law that allows certain people to seek and self-administer a lethal dose of medication to hasten their death. The law limits the option to Vermont residents — and Ms. Bluestein was willing to move there, if need be — but this month the state waived the residency requirement for her, part of the settlement of a lawsuit in which she had argued the restriction was unconstitutional.

Now, Vermont lawmakers are considering scrapping the residency requirement altogether, making the practice more broadly available.

The debate over the proposal has parallels to the issue of abortion, in which access to the procedure now differs greatly from state to state in the wake of the 2022 Supreme Court ruling that overturned the right to abortion nationwide.

“To my knowledge, other than what is happening right now with abortion, there are no other medical procedures that are limited to people on the basis of their residency,” said Amitai Heller, a senior staff attorney with Compassion & Choices, an advocacy group that supports expanding access to end-of-life medication. The group helped file the lawsuit on Ms. Bluestein’s behalf.

“It’s just unfair, and it doesn’t really make sense to restrict some sort of medical practice just based on ZIP code or residency,” Mr. Heller said.

Vermont is one of 11 jurisdictions, including Washington, D.C., where certain patients with a terminal illness can seek a lethal dose of medication as they near the end of their lives. Oregon is the only jurisdiction without a residency requirement, after officials there agreed in a 2022 settlement not to enforce the one in its law.

Connecticut, where Ms. Bluestein lives, is not among the states where medical aid in dying is legal. Bills have been introduced repeatedly, starting in 1994, and have failed each time, most recently in 2022. That is when Ms. Bluestein looked to Vermont.

“I thought, I can’t wait any longer for Connecticut to get its act together,” she said.

(Legislation to legalize medical aid in dying has been introduced regularly in New York since 2016 but has failed to pass. New Jersey has had such a law since 2019.)

In the Vermont General Assembly, the bill that would remove the residency requirement passed the House in February and is awaiting action in the Senate.

“We had heard from advocates and our health department that this aid in dying is a medical health care,” said Representative Golrang Garofano, who is known as Rey and is a sponsor of the bill. “There’s no other restrictions around residency requirements for other types of health care.”

Oregon was the first state to pass a medical aid in dying law; it took effect in 1997. Its residency requirement was included to “neutralize the myth that terminally ill people would flock to Oregon to use its medical aid-in-dying law,” said Barbara Coombs Lee, a co-author of the measure. The requirement was also meant to ensure that the law would be “tightly controlled and limited to test safety and effectiveness.”

Vermont modeled its law after Oregon’s, said Ann Pugh, a former lawmaker who worked on the legislation. Ms. Pugh said she now supports the effort to drop the residency requirement. “When someone comes to Vermont, they follow the rules of Vermont, they follow the laws of Vermont, they get the care, they get the services, and this should be no different,” she said.

But opponents do not consider the practice medical care.

“This isn’t a medical treatment,” said Jennifer Popik, the director of the National Right to Life Committee’s Robert Powell Center for Medical Ethics, which opposes such laws. “This is a medical professional abandoning their patient and giving them the tools to end their life.”

Detractors include the Catholic Church and disability rights groups, which worry that physicians and insurance companies may steer people with disabilities toward life-ending measures. Instead, those groups tend to favor improving palliative care, which is focused on easing the symptoms and side effects of disease and treatment.

Brian Kane, a senior director of ethics at the Catholic Health Association, said he was concerned about states’ expansion of access to the practice by dropping residency requirements. “Rather than trying to address the needs of vulnerable people, we offer them the possibility of killing themselves,” he said.

Anita Cameron, a disability rights activist, said that if patients reach the point where they would rather die than live in pain, their doctors are not properly managing their treatment. She said she feared that if the practice became more widespread, it would come to reflect the inequities in the broader health care system.

“There’s just no place for it, especially when we have such a long history of racial disparities in health care and disability discrimination in health care,” Ms. Cameron said.

But proponents of the practice say there are safeguards in the laws to prevent abuse. In Vermont, for example, patients must be 18 or older with a terminal condition and a prognosis of six months or less to live. They must be able to self-administer the medication and be capable of making their own health care decisions.

In Vermont, 173 patients participated in the “Patient Choice at End of Life” process between May 2013 and December 2022, according to the Vermont Department of Health. Many of those patients had cancer, and others had amyotrophic lateral sclerosis, or A.L.S.; neurodegenerative conditions; and other diagnoses.

Dr. Diana Barnard, a physician in Vermont who filed the residency lawsuit jointly with Ms. Bluestein, said she spends significant time with terminally ill patients discussing which options might be best for them.

“This really is all about patients,” Dr. Barnard said. “It’s about patients who are wanting to live, wanting desperately to live, but having to accept that they are living with an illness that is going to end their life.”

Dr. Barnard said her patients want a say in what happens at the end of their lives. They are thinking deeply through a number of ways to be physically and emotionally comfortable during their last days.

Dr. Barnard has patients from New York whom she sees regularly and said it had been difficult to tell them they were ineligible for medical aid in dying because they didn’t live in Vermont.

“It seemed unjust and unfair,” she said.

Dr. Diana Barnard sits in a rocking chair in her Weybridge, Vt., home.
Dr. Diana Barnard of Weybridge, Vt., specializes in hospice and palliative care.

Ms. Bluestein hopes that the Vermont residency requirement will soon be lifted. She said she was glad she would not be “at cancer’s mercy” and could instead make her “own decisions about when I have had just about all I intend to take from this latest cancer.”

The practice had been at the forefront of Ms. Bluestein’s mind decades before she got sick. Her husband, a physician, had done advocacy work with Compassion & Choices over the years.

Ms. Bluestein thought deeply about the option when her mother died. In the weeks before her death, her mother had a full course of chemotherapy and was fatigued. She didn’t even want Ms. Bluestein or her brother to visit.

“We had no time with her at the end of her life,” Ms. Bluestein said. “I don’t want my children, who are now 45 and 47 years old, to have those memories of me at the very end.”

Ms. Bluestein’s diagnosis of late-stage fallopian tube cancer in March 2021 was her third bout with cancer. She had been diagnosed with breast cancer in 2018 and had a double mastectomy. As she recovered, she was diagnosed with malignant melanoma.

For now, Ms. Bluestein is undergoing chemotherapy, and it appears to be working. If that changes, she is likely to end the treatment, which will quickly make her eligible for hospice. And that is when she is likely to request the lethal dose of medication.

In the meantime, she has been curating 50 years of photographs and putting them into boxes. She hopes to spend her final day, whenever it is, with her family sifting through the photos — ones of her children playing T-ball and soccer and of the family’s many trips to Disneyland — peacefully trading memories.

Complete Article HERE!

As a Doctor, I Know Being Ready to Die Is an Illusion

By Sunita Puri

Nine years ago, near the end of my residency training, I sat opposite a patient, wondering whether he’d accepted that he was dying. He was in his 60s, an artist with sinewy arms and serene eyes, someone I’d come to know well over the past three years. Cancer had broken into his liver and bone marrow, robbing him of hunger and energy.

Each time I saw him, the hollows of his cheeks deepened. I wanted to tell him that he was dying, that I wanted to understand how he envisioned spending his remaining life. But he mostly spoke about his plans: a camping vacation in six months, a friend’s wedding after that.

I awaited some sort of arbitrary signal that it was safe to talk about dying. Maybe he’d tell me that he didn’t want more chemotherapy or that his affairs were in order. Like many physicians, I feared that by talking about death before he appeared ready, I might take away his hope, make him give up or send him into an unstoppable tailspin of anxiety and depression.

Whether he hadn’t accepted his fate or simply wished to avoid the subject, he didn’t appear to be ready to talk about his death. How could I reconcile what appeared to be our radically different interpretations of his condition? By waiting for him to act in ways that I understood as acceptance, I thought that I was being compassionate and sensitive.

“I don’t think he understands how sick he is,” I told my supervisor. “He’s not there yet.”

In the years since, I have learned that trying to find immutable evidence of someone’s readiness to die is like trying to wrap your arms around a ghost.

Reconsidering what we think acceptance means — and whether it will come to pass — requires loosening our expectations of those who are dying. To become better at talking to one another honestly about death and to truly prepare for it, we must first understand why we expect the dying to demonstrate readiness in the first place.

During residency, my compatriots and I relied on Elisabeth Kübler-Ross’s stages of dying. We were quick to diagnose denial and wait for acceptance. We assumed certain decisions that we wanted people to make reflected readiness — a patient with heart failure who agreed to a do-not-resuscitate order, another with emphysema who enrolled in hospice.

But if patients dying of cancer insisted on life support, we figured that they probably weren’t there yet. When people sobbed or screamed during conversations about their illness worsening, we told ourselves they simply weren’t ready. We didn’t want to stumble through the thicket with them; we wanted to meet them at the clearing.

My patients’ families often searched for similar clues, their pain amplified if their loved one didn’t appear to have come to terms with death or wasn’t ready to let go. Such searching, while well intentioned, betrays fears about suffering — the patients’ and our own. If the dying reassure us that they are ready to die, perhaps we may live with a softer grief. If they show us that they are ready to go, we can be readier to let them go.

The stark separation between those who are dying and those who are not is complicated inside a hospital. Family members and medical teams experience and respond to dying people’s suffering in distinct ways. Yet doctors and families alike can shackle those who are dying with gauzy expectations: Perhaps they have newfound wisdom to bestow. Maybe their regrets will remind us what really matters in life. Saccharine fantasies of deathbed reconciliations protect us from the full spectrum of our emotions and those of the people we will lose. But romanticizing the dying strips them of their complexity. They are still human, equally capable of picking fights or making amends.

Fantasy also obscures a scarier question: If a loved one or a patient isn’t ready to die, how should we respond?

It is easier to search for readiness than to process what its absence means. Distilling human experience into supposedly self-explanatory concepts like accepting death becomes a bandage that we apply, hoping that the raw emotions about death won’t bleed through. We want neatness and containment, not the spill of grief.

But death is never neat. A good death should be defined by how well and honestly we care for the dying, not by their performance on our behalf. Expecting them to make death a process full of insight and peace only limits our full emotional and spiritual participation in their death. By sacrificing neatness, we can have a conversation about what the dying truly need from us. Understanding their authentic experiences helps us not only to see them more fully but also to prepare, together, for losing them.

Nine years ago, I wasn’t ready to confront my expectations of my patient; doing so would have required dismantling the myths I had about myself as a steward of hope. My expectations were a self-aggrandizing way of holding him at a distance. Fearing that he couldn’t handle a conversation about death was infantilizing, a form of paternalism, however well intentioned. How was I any different from physicians in decades past who withheld patients’ diagnoses to spare them suffering they supposedly couldn’t handle?

To be the physician my patient needed, I had to accept that neither he nor I could be fully prepared for his death. I had to trust that a man three decades my senior was capable of handling life-altering information, that he had experienced tremendous loss before, that nothing and nobody could control how he would contend with this last leg of his life. But instead, I waited for him to initiate a conversation that was my responsibility to start.

Now, as an attending physician, I hear echoes of my younger self when I talk with residents. If they mention that a patient isn’t ready to die, I ask what it looks like for someone to be ready to die. I remind them, gently, that awaiting specific imaginings of readiness may only justify excusing themselves from sharing hard truths with someone whose reactions they cannot anticipate. Abandoning this search may allow them to care for people in a way that might inspire their own versions of preparation.

Nine years ago, I think my patient sensed both my urge to tell him something and my hesitance. “Are you OK?” he asked me one day.

“I’ve been meaning to talk to you about something,” I stammered, looking past him at the eye chart on the wall. “I’m worried about you, because every time I see you, you’re losing weight and seem less like yourself.”

“It’s because I’m dying.” He was matter-of-fact, as though he’d just said it was raining outside.

I was stunned, then relieved. Yet I still struggled to tell him what I wanted to say. “I am so sorry,” I whispered.

“It’s not your fault. My father died in my arms. So did my wife,” he said. “It’s just my turn now.”

“I feel bad that I didn’t talk to you about this sooner,” I said. “I thought I’d upset you or maybe you weren’t ready yet.”

He laughed. “Ready?” he said. “I’ve wrapped my head around being dead, certainly. Not sure if I’ll ever really be ready. It’s not like packing a bag and standing outside waiting for a taxi.”

He died in his sleep a month later, missing his vacation and his friend’s wedding. Even if he told me he was ready, nothing could have lessened the blunt force of losing him.

Complete Article HERE!

Remembering Loss Together

— A Review of The Meaning of Mourning

Georges Michel, “Landscape with Mill”

By Henry George

The fact of our mortality is something we don’t like and tend to avoid. The face of death is one that drives our inner gaze away to livelier subjects should we happen to glance at it with our mind’s eye at odd moments, perhaps during the deep quietness of the 3am sleep-slipped nowhere time. But death, loss, and grief are all too insistent a part of life, despite our most fervent desire that it should be otherwise. How we face this inevitability, and the means for doing so, is the subject of this collection of philosophical essays by a range of scholars and thinkers. As always with a collection of this kind, there are some that succeed more than others, but the parts just about cohere into a whole that considers the meaning of mourning: what it is, how we perceive and practice it, and where it leaves us in the absence of the one who is gone, all of which help prepare us, even if only in a small way, for the day when the grey rain curtain of the world pulls away, and we step onto the new path.

Setting the Scene and Defining Terms

The collection spans fifteen essays from various disciplines and perspectives. The editor, Slawkoski-Rode, writes in the introduction that “while the collection is not designed to serve as a comprehensive study or companion, it assumes a holistic, interdisciplinary approach to the theme of mourning that combines philosophy, theology, psychology, medical science, and the arts.” The Introduction notes the universality but also the religious, cultural, and ethnic particularity of mourning and defines mourning briefly as “the public display of grief caused by the loss of a loved one.” As the introduction notes, the following chapters “invoke … the idea of mourning in a broad sense, which goes beyond” this definition.

Several of the chapters defined the matter of mourning in a more specific way. One is found in the chapter “Mourning: A Phenomenology,” where “Mourning, to put it simply, is the intentional structure of the extreme loss, especially death, while death is the material core of this intentional structure.” Another chapter, “Meaning and the Recognition of Value,” defines “grief as a kind of strong negative emotional response to loss, and mourning as a somewhat wider concept encompassing grief as well as patterns of behavior that manifest or are influenced by such grief.”

Mourning thus articulates and gives shape to the inchoate, roiling sea of grief that roars through the hearts of those in its grasp. Mourning, properly understood and practiced, is a beacon signalling the way to the dry land of gradual acceptance and closure, reconciliation with oneself for having outlived the lost and with the lost for having left us behind. The book is structured thematically, with the first six chapters philosophical in orientation. To begin, four chapters “that consider the metaphysics of death and the theology of loss, including expressions of these ideas in ritual form and their implications for concrete experiences, like reproductive loss,” followed by “two chapters which analyze the relationship between mourning and the recognition of value, and the role hope plays in the experience of loss.”

In a more personal psychological vein, the following four chapters “explore … themes in the psychology of loss and the psychological roots of grief in early childhood, psychological vulnerability to loss in later life when opportunities for rebuilding meaning are diminished, and the interpersonal phenomenology of loss.” The book then moves to the realm of political philosophy, “to a set of issues connected with public and cultural aspects of mourning . . . Community mourning and the need for public commemoration is considered, and how these may become complicated by cultural or historical factors. Differing attitudes to the loss of an idea are contrasted, and how mourning can be expressed in the rethinking of intellectual heritage of a culture.” The book draws to a close with a reflection by the sculptor Alexander Stoddart on “the cultural role of sepulchral art,” and ends with Alexander Tallis meditating on the need to live with loss.

Pitfalls

Overall, this book proved of significant value to me personally, of which more below. But it is not without flaws. This is an academic book, so we are therefore subject to the sadly expected dry, dense prose of academic writing in a number of the chapters. It seemed to me that the essays could be divided between those philosophers either unconnected to, or retired from, the academic life, and those still working within its halls, a divide delineated by the fluency or otherwise of style, and eloquence or otherwise of expression.

Those who wrote from this more formally academic position therefore laced their writing with the buzzwords necessary to stand up before their peers and the forces of publish-or-perish. Not everyone can approach the eloquence of an Anthony O’Hear or a Roger Scruton, but some of the chapters were so technical in subject matter and impenetrable in style that what could otherwise have been an intriguing approach to the subject of mourning was rendered illegible.

As one example, Amber L. Griffioen’s chapter, “Toward a Philosophical Theology of Pregnancy Loss,” considers a truly heartrending tragedy faced by many women, when “40 percent of all pregnancies do not result in a live birth.” Yet the use of Critical Theory and Gender Studies jargon acted as a barrier to a deeper understanding and appreciation of such a tragic part of the female experience: The repeated references to “neoliberal capitalism,” and “patriarchy,” calls to be “inclusive of all persons capable of gestating a human being inside them,” the ever present need to engage in different “discourses,” and finally the construction of a gestational model of God, God as potential birthing mother. Given the number of women who go through such a harrowing episode, and the ripple effects of grief and loss through those around them, this chapter represented a sadly missed opportunity because as Griffioen writes, there is a gap in the philosophy of loss and mourning for the life that ends before it begins.

Two other chapters that were less than successful for this reader were the aforementioned “Mourning: A Phenomenology,” by Balázs M. Mezei, and Mourning and the Second-Person Perspective, by the editor of the volume Mikołaj Sławkowski-Rode. It must be noted immediately that the main issue here is that I am not a trained philosopher, and I am especially not a phenomenologist. Both authors refrained from employing an opaque style of composition, but the expression and specific terms and phrases central to a field like phenomenology meant that I struggled to make head or tail of these essays.

This is, again, a shame because the question at hand, of death and how we encounter it, is such an endlessly urgent subject that I couldn’t help but feel disappointed at the opacity of these chapters. On the other hand, the fact that it was a struggle to grasp these chapters’ meaning at least shows they were nevertheless compelling enough to demand such an effort. The essay on “Grieving and Mourning: The Psychology of Bereavement,” by Colin Murray Parkes was much less compelling, bogged down in a scientism that failed to approach the matter at hand in a way that had an impact. This could not be said for the remaining chapters, all of which spoke powerfully, at least in some way, to the matter at hand.

Tending the Graves of the Lost and the Graves Within our Hearts

As Cathy Mason and Matt Dougherty argue in Chapter Six, for us to grieve and mourn means that there must be something of close to inestimable value that has been lost. This in turn reveals the fact that we as God’s creation find the value inherent to life, recognising its intrinsic nature. Mourning and grief may signal something of depthless sadness, but they also point to the fact that even in this darkness, the light of something to value is there, as the act of mourning and the feelings of grief testify to this. There is then the guilt felt when these all-consuming feelings recede after a time, as they do for most of us. This might suggest a less-than-wholesome sentimentality, an artifact of our neural biology feeding us different hormones at the loss of a loved one, undermining the claim of the sincerity of our attachment to those who have been detached from us.

But as the authors write, moving forward can itself be defended as a form of correctly valuing something. After all, in the Jewish tradition, one mourns the loss of a loved one for a year, but then one is expected to re-enter the land of the living, to say yes to life. Remaining forever in the shadow of the valley of death is a wrong, to oneself and to the one no longer here. Indeed the authors argue that moving on with life may be a sign of having given proportionate honour, respect, and love to the lost. If one is in a state of grief-stricken solitude ever after the loss, does that really point to an appropriate response?

If, as the authors write, “virtue, on a common conception, involves both acting well and having appropriate affective responses. For our purposes, the latter is the relevant aspect of virtue” one might suggest that this constitutes a devaluing of the mourning process, and therefore of grief at the losing of a loved one, and even a devaluing of love itself. Surely the one who is here no more would themselves be grieved if those left behind were reduced to some living death of bare existence, rather than moving forward through the rest of the life they have? As the authors conclude: “In the act of mourning, we mourn something or somebody lost, yet we connect this loss to the renewal already heralded in the act of mourning. Mourning is the gateway between decay and renewal, degeneration and generation. As opposed to melancholy, mourning uncovers the way to self-renovation, either at the individual or the communal level, and so it stops the ‘whirlpool,’ the self-destructive power of depression.”

To avoid being drawn into the trap of melancholia, grief and loss must be given shape and a context within which one can express such deep and powerful emotions. Religion has traditionally been the main form and means by which we have done this. In light of this, “What Can the Roman Catholic Liturgies of the Dead Offer Mourners: Solidarity with the Deceased and Hopeful Protest?” by Richard Conrad OP describes in detail the different forms this Liturgy has taken over the centuries, comparing the Old and New Liturgies and their differences regarding their approaches to death and mourning. Conrad mounts an eloquent defence of the perspective he argues is implicit in the Old Liturgy. For him, this form emphasises death’s unavoidable reality, and the loss-induced pain that accompanies it. In the Old Liturgy, Conrad holds, the different stages of prayer, ceremony, and reflection all provide a way to articulate the mix of sorrow and gratitude that people feel, as well as the anger at the injustice of the death of a loved one, which he sees as justified, a justification rooted in Christian theology.

This chapter’s focus on theology as well as its liturgical expression was both enlightening and consoling in equal measure: enlightening for its explication of a form of worship, remembrance, and mourning that I as an Anglican am not familiar with; consoling, for the depth of its commitment to describing something that fulfils Jesus’ proclamation that he lays no burden on us that we cannot bear. The Catholic Liturgy of the Dead guides the mourner through the vale of tears into which we plunge at the death of those closest to us, illuminating the path with the lamplights of faith, thereby illuminating the souls of those left behind with the warmth of Christ’s love. This instils a sense of hope that while death is an evil, for “God did not make death, and he does not delight in the death of the living,” it is also not the end of all things, our wretchedness having been saved and our pain salved by the sacrifice of Christ.

As the author writes, Aquinas saw death as both evil and natural, the evil of our life on earth ending in service to the greater, perhaps ultimate good of passing through to God’s Kingdom, uniting with the love that surpasses all understanding. The possibility of a final redemption and salvation is open to all those who repent of the sins and wrongs of their life, inherent to our lives in a world broken by sin, rooted in our fallen nature. The journey through the evil of death to the ultimate good of God’s friendship has been made more glorious by the overcoming of our Fall, more glorious indeed than if we had never fallen and known all the sufferings and wrongs of the world we call home. For Conrad, “In sum, death is a natural necessity but not a good; it is an enemy to be defeated. But it is indirectly willed by God, in a small way as penalty and sobering fact, in a more positive way for solidarity with Christ’s victorious journey through death and as a stage in our liberation to glory. The current Liturgy of the Dead seeks to emphasize how being patterned on Jesus’ Death leads to being patterned on his Resurrection.”

Vincent Van Gogh, “At Eternity’s Gate” (1890)

What happens, though, when we cannot come together to mourn through reciprocal acts of belonging? John Cottingham considers this question in Chapter Eight, “Bereavement, Grief, and Mourning,” in which he reflects on the challenges thrown up by the lockdown and social distancing responses to the Covid-19 pandemic. He argues that, deprived of the social contact that comprises the texture of a meaningful life, many of us experienced a kind of bereavement that may seem inconsequential when contrasted with those who faced and face actual bereavement. However, this kind of coerced social detachment sundered the links between human subjects, turning us into objects to be avoided for fear of infection and contamination.

To communicate the power of mourning in times of bereavement, Cottingham draws on a wide array of literary and religious references, from poets to the Psalms and the Gospel of Luke. These literary forms give structure and substance to one’s grief and sorrow as the Liturgies do, but in a broader way, reflecting the synthesis of the universal with the particular which comprises the ground of life. One quote that struck home for me was Dante’s, when one of his characters states that there is “No greater grief / Than to remember happiness gone by / In time of sorrow,” a line that explains why remembering times of joy in times of sadness increases the sorrow as much as the gladness of remembering such a time. Even so, sometimes grief can draw you into yourself, away from such memories where, as John Keats wrote, the muffled bells of mourning “tolls me back to my sole self.” This inward turn can mean that the outward world seems to mock us with its contrast, leaving us, in the words of J.H. Housman,“I, a stranger, and afraid, in a world I never made.”

These sentiments, expressed in poetry, are also given voice in the prose of Eleonore Stump’s chapter, “The Problem of Mourning.” Stump makes the point that mourning and grief at the supposed evil of death seem a strange reaction to someone’s passing over when traditional Christian theodicy holds that all parts of our lives, good or ill, are redeemed by the unification with God. Stump also makes the point that it is strange that the Creator should not Himself be in mourning at the fallenness of His creation, i.e. our sinful nature and the distance between our current state and the one into which we entered with God’s breath of Life still felt on our faces. In light of the Fall, Stump asks, “Why is there not something sad at best or devastating at worst about the lives of human persons in the post-Fall world, even if those persons are redeemed and restored in the end?”

Over the rest of the chapter she considers this question, wrestling with “the felix culpa view, which supposes not that the story of God’s creation with the Fall and its subsequent suffering is a disappointment for God but that, on the contrary, the world with its history of sin and suffering is better and more glorious than the world would have been if there had been no Fall.” This is the view held and defended in the chapter on the Liturgies for the Dead. Stump quotes the apostle Paul, who writes in Romans that “his true self is characterized by the higher-order will for the good. That is why Paul repudiates as alien to himself—alien to his true self—his own first-order volitions that are discordant with that second-order will.” As a result, “even in his internally fragmented state, the self that wants to will what is good is his true self.” Stump then questions what comprises the “true self” in light of “the wounds and scars of post-Fall human life.” Are these examples of the suffering that is part of life and so in fact crucial to our perfection through redemption in Christ?

This chapter thus proved particularly relevant for me, as it reflects something that I have also wrestled with, having been born with a genetic fragile skin condition that brings physical and emotional suffering in its wake, and which will ultimately prove fatal. As Stump argues, the suffering I experience is not reducible to these forms, however. It is also a result of what we as dependant, rational animals care about, which itself suggests a value hierarchy upon which we base our view of what and who, does and does not matter. This is as true for me as any able-bodied person, and perhaps more so, with my condition heightening and concentrating the experience of the human condition in all its triumph and tragedy.

As Stump writes, “Every human person has some care about what kind of person she is and about her being what she ought to be, where what she ought to be is something like thriving as a good specimen of the species human being. Consequently, part of what it is for a human being to suffer is for her to be kept, to one degree or another, from thriving, in this broad sense. What makes a human person thrive, however, is an objective matter.” At the same time, “what human beings care about has a subjective element too, which does not have to do just with thriving.”

In sum, “if we take suffering to be a function of what a person cares about, then suffering can be understood this way: a human being suffers when she fails to thrive, or she fails to have the desires of her heart, or both.” Out of this, we can say that “If in heaven a human being is her true self in its perfected state, and if in heaven she does not suffer, then in heaven she has, harmoniously ordered, both thriving and heart’s desires. She has the convergence of what she cares about on both an objective and a subjective scale of value.” Therefore, “the perfected version of a person’s true self, the condition of a person in the afterlife in heaven, is what she is when what she most cares about, in both an objective and a subjective sense, converge in her and in her life. … On Christian doctrine, human beings are made in the image of God. The perfection of a human person’s true self will thus also be the fulfillment of that image in her.”

The doctrine of the Trinity holds that God through Christ suffers with us and as we do, taking the sin and suffering of the world on his shoulders, which means that “the nature of God is most evident in Christ’s crucifixion because love is greatest and most evident there.” Therefore, “If it is the image of God in human beings that perfects the true self of a human being, and if the nature of the love that is God is most evident in the crucified Christ, then there may be some way in which the wounds of human suffering could intensify the image of God in a human being too.” It is because of this that “It may be possible to see a way in which the wounds of a person’s suffering could become for that person an image of Christ. On this way of thinking about the perfection of the true self of a human person, what makes a human person glorious and perfected is her resemblance to the incarnate Christ when the love of God is most manifest in him.”

Bringing the chapter to a close, Stump presages and defends the felix culpa view of suffering and loss seen in Conrad’s defence of the Catholic Liturgy of the Dead by arguing that

If the love that is God’s nature is most evident in the wounds of the incarnate Christ and if the wounds of human suffering could be suitably connected to Christ, then there is a basis for an argument that the wounds of a post-Fall human being can render him more in the image of God than he would have been had there been no suffering in the world. In that case, on Christian doctrine there would be something more glorious about redeemed human beings with wounds than there would have been had there been no Fall, no suffering, and no wounds and scars. On this view, it is the image of love incarnate that makes a wounded post-Fall human person more glorious in his true self than he would otherwise have been, and the image of love incarnate in the true self of a human person would have been less in a world without a Fall.

Again, this is something that I have reconciled with over my own life, as I’ve come to accept the final limit of mortality, one that we all share as the limited beings we are, but which I am subject to as I am to life’s sorrows, in a heightened and concentrated form. The cancer that will ultimately set me on the journey from this world brought me face to face with the death that we must all come to terms with. Some cannot do so, and ceaselessly seek a way to avoid stepping onto the road of our final journey. Most know that this is our fate, but understandably do not wish to think on it too deeply.

And yet, having accepted and reconciled with my finitude and the fact of my life’s end does not preclude sadness or a sense of regret. It is in this vein that Cottingham quotes Gerard Manley Hopkins’ poem, “Spring and Fall,” where the young girl Margaret weeps over the fall of Autumn’s golden glory:

Margaret, are you grieving
Over Goldengrove unleaving?
Leaves like the things of man, you
With your fresh thoughts care for, can you?
Ah! as the heart grows older
It will come to such sights colder
By and by, nor spare a sigh
Though worlds of wanwood leafmeal lie;
And yet you will weep and know why.
Now no matter, child, the name:
Sorrow’s springs are the same.
Nor mouth had, no nor mind, expressed
What heart heard of, ghost guessed:
It is the blight man was born for,
It is Margaret you mourn for.

Here Hopkins demonstrates the unique ability of art and literature to bring together the universality of the good, true, and beautiful, of morality itself, with the concrete experience of our own lives through which these moral ideals are made real and therefore attainable and comprehensible. The experience of seeing a striking winter’s day, the glitter of frost caught in the sun’s embrace, is as meaningful as the soft, sad beauty of the autumn, when we are reminded that our time here is short, but that it still has inestimable value for the fact of our being here to witness the glory and tragedy of God’s creation, the knowledge of our passing away intensifying the joy by edging it with sorrow. As Cottingham writes, each of us can feel the griefs of life during the succeeding stages of our lives, and no age or stage has a monopoly on such a thing. Is my grief or sense of mourning any greater or more righteous that someone older or younger? Of course not. What binds us across time and across the space between us in the here and now is the shared particularity of our sorrow, and the hope that there is a redemption to it in our lives and after we’re gone. We all, as Thomas Hardy writes in “At Castle Boterel,” see our lives and the loves we have known, we

look and see it there, shrinking, shrinking, 
I look back at it amid the rain 
For the very last time; for my sand is sinking,  
And I shall traverse old love’s domain
Never again.

As Gandalf says near the end of The Return of the King, “I will not say do not weep, for not all tears are an evil.” This approach is echoed in the last two chapters considered here, by Anthony O’Hear and Roger Scruton. As O’Hear writes in “Mourning and Memory, Private and Public Dimensions,” “Christ, who had not foresworn this life … was moved by the tears of Mary to summon Lazarus from the grave (John 11:33).” Citing C.S. Lewis in his masterpiece, A Grief Observed, O’Hear reminds us that to leave our grief in its most private space, within our hearts, is to leave it to tear out what makes one alive from the inside, to leave one hollow and on the edge of despair. This kind of private grief is ultimately selfish, and it precludes the coming to terms in community that is the only way we can reconcile with the new world as interdependent individuals. O’Hear also references Aristotle’s call togive appropriate honour to the departed, to treat the body with awe for its constitutive part of life, but not to put the lifeless body in place of the living person.

Rituals and ceremonies of memorialisation and commemoration enable the rightly ordered expression of grief and mourning that binds up the hearts of those afflicted, through the binding together of those from whom the dead have departed. O’Hear gives a moving example of the potential for such a beneficial result when he describes the ceremonies of mourning and memorialisation undertaken in Ireland to remember those who died during the violence of the Troubles. Of course these could not totally heal or undo what had been done by either side; the world had still been rent and torn by the violence. But it at least brought people to reflect on the hope still intrinsic to life, the possibility of forgiveness, and the way forward to a future oriented to human flourishing, even in light of our fallen, flawed natures. If we become wrapped up in our private grief, not only do we neglect those around us now but also the past with its memories of those who went before and the future with those who will come after. We therefore build a tyranny of our grief, silencing and depersonalising those who do not share our inner, consuming turmoil. As such, these acts of remembrance and reconciliation not only serve to reweave the frayed ties that bind between people now but also across the years, restoring the cords of memory that bind the dead, the living, and those yet to be born, giving them back their voice in the democracy of the dead and the unborn.

Scruton’s chapter complements O’Hear’s arguments through an examination of an example of mourning made complicated by a terrible history and cultural suicide. Scruton reflects on the seeming impossibility of mourning for a destroyed culture, an impossibility that has come to define the German experience due to the recruitment, often willingly accepted, and subsequent exploitation of this nation’s undoubtedly great cultural heritage by the Nazi death cult. Scruton argues that such a culture of repudiation—one which refuses and discards those values which many Germans feel in their hearts have been tainted beyond purification by such use as the Nazis put them to—creates a conflict deep within the national soul. This deliberate discarding, repudiation, and ultimate suppression of the past denies the duty of piety we have towards those who came before.

This purposeful rejection of the past as such is not only confined to the German context, although given the horrors unleashed, it is certainly a special case. This denial of an obligation towards the dead is common across the Western world, constituting what Pascal Bruckner calls a “tyranny of guilt” that has risen to power in our cultures. This emphasises only the terrible things our ancestors did and ignores the noble things they also achieved. The result of the refusal of this obligation of piety, maintaining the threads that bind the past, present, and future into the tapestry of our culture across time, means that our role in remembrance remains unfulfilled. As Scruton closes by arguing, this makes it impossible to reconcile with the past, accept the loss that is our lot, and move forward having laid the dead to rest in one’s own heart. Without tending the graves of the dead, we leave the graves in our own hearts uncared for, scarring our souls as a result.

Conclusion

This collection of essays was not always successful in its aim to encourage reflection on the meaning of mourning. Its flaws demonstrate some of the problems with academia today, whereby employment of complex theoretical terms and language overrides clarity of communication and eloquence of expression. However, for the most part the collection succeeded in making me reflect on the reality of loss and the grief that precedes it and results from it. The need to reconcile with one’s finitude and live as good a life in light of this was made clear by many of the more successful essays and tallied with my own experience of coming to terms with the limits on my life from my condition, both in an everyday and an ultimate sense.

However, this reconciliation and acceptance can only be achieved in community with others, when one’s life feels knitted into a greater whole, our existence part of the greater life of the social ecology. This applies not only to the present, but also to remembering the past and anticipating the future. This has been something that those like O’Hear and Scruton have taught me, and the other essays in this collection that resonated layered atop these contributions, adding to the sediment of meaning that accrues over a life lived in a world that is a home from which we journey to our final rest, where our hearts finally know peace.

Complete Article HERE!

A living wake

— Why this Charlottetown man chose to talk about his medically assisted death

Craig Mackie of Charlottetown chose medical assistance in dying in the fall of 2022, and shared his thoughts about it online with family, friends and the public.

Listen to Craig Mackie’s journey in a new Atlantic Voice documentary

By Jessica Doria-Brown

In the weeks leading up to his death, Craig Mackie’s breathing mirrored the short, sharp strokes he was making on his laptop keyboard, documenting his final days.

“At this point in my fading life, I’m struggling to breathe every day,” Mackie said from his kitchen table in Charlottetown, in early October 2022.

A rapid decline due to pulmonary fibrosis had left Mackie, 71, endlessly gasping for air, requiring near-constant support on oxygen. For months, he used his remaining energy to writeat length about his health, drafting dispatches from the confines of his home and sometimes a hospital bed. Then he shared these thoughts publicly, on a blog and through social media.

“The feedback I’ve been getting is that the way I write is — it seems to speak to a lot of people. So I’d like to keep that going,” said Mackie.

The writing continued as he looked into the possibility of a medically assisted death, determined not to die the way his mother had. She too had pulmonary fibrosis.

“She literally suffocated to death,” said Mackie. “And I thought, if I ever have the choice, that’s not what’s going to happen to me.”

Throughout his life, Craig Mackie used his voice to help others. And he decided to do the same as he faced death, and his choice of medical assistance in dying. A documentary by Jessica Doria-Brown.

Starting conversations

Medical assistance in dying, or MAID, has been legal in Canada since 2016.

Mackie’s application was approved in September, and having that option offered him comfort. Throughout his life, he had taken on leadership roles — including at CBC Prince Edward Island and as the former head of Immigrant and Refugee Services Association P.E.I — and sharing his thoughts online about MAID became a way to continue using his voice and connecting with others.

“I wanted… to have people understand that in Canada we have this choice and it’s very special, that it could easily be taken away,” said Mackie.

“As we know from [Roe] v Wade in the States, these things can be legislated and they can be taken away. So I want people to understand that it’s — it’s a compassionate, human choice.”

MAID remains contentious in Canada. Proposed legislation to extend access to people with severe mental illness has come under fire, with changes now delayed until 2024 as the federal government, provincial and territorial partners, and medical communities assess the best way to move forward.

On P.E.I., only a handful of doctors and nurse practitioners work in this area of health care. Dr. Megan Miller, a family physician with extra training and experience in palliative care, said the focus is on helping patients who want to learn more about MAID understand their options.

“It’s a very rigorous, extremely careful process that, as practitioners, we take extremely seriously. And we do that work in a very, careful and considerate way,” said Miller.

“There is never any pressure for patients. They can withdraw their request or change their mind at any time and we would all 100-per-cent support those decisions.”

We are born. We live. We die. It’s what you do with the middle part of that sandwich that matters to me.
— Craig Mackie

In P.E.I., there were 111 MAID deaths between 2016 and 2021, with the numbers growing each year. Miller describes it as a complex and immensely personal choice, with more people applying for it than actually going through with it.

But either way, she says, talking more openly about death — and MAID — helps us all.

“I think it can be an isolating experience for some patients and people experiencing it,” said Miller.

“I think there are a lot of people in the public who don’t know how to support those patients or talk to them because of the awkwardness around it, and we are all better off if we can share some vulnerability and share the uncertainty and have conversations about it.”

A man in shorts and a sweater leans against a wooden post, surrounded by trees.
Craig Mackie was active throughout his life, enjoying hiking, curling and tai-chi. Pulmonary fibrosis brought an end to all these activities.

Opening people’s eyes

By early October, Mackie was ready to set a date for MAID. Just as he had been open about his medical journey so far, he continued to write about his final choice.

“I’m not afraid of death. It is a natural part of the cycle of life. We are born. We live. We die. It’s what you do with the middle part of that sandwich that matters to me,” he posted on Oct. 21.

For Mackie’s friends, following his regular posts became a way to stay connected in his final weeks, and add their own comments, photos and music. His Facebook page became a daily destination for those wanting to read his latest account and see what others had shared.

“I think by Craig being so open about it, it’s opened a lot of people’s eyes to the process,” said Peter Murdoch, a friend and former competitive curling teammate of Mackie’s.

“By Craig doing this, I think it’s going to make the conversation, at least among his circle, a heck of a lot easier for people.”

Complete Article HERE!

What I learned about grief from working at a funeral home

— Talking about death, grieving and deathcare options can be positive

By Heather Taylor

When I tell people I worked at a funeral home, I expect one of several responses: they are surprised, change the subject or express how depressing they think the job is. There were some sad days during my two years of work as a funeral arranger in the deathcare industry, but I felt great satisfaction in helping and supporting people during a hard and stressful time. The lessons I learned from having a front-row seat to hundreds of families’ grief have remained with me, and there is a benefit to sharing those lessons with others.

The importance of talking about death, dying and grieving is not always fully understood in our culture and it is often treated as taboo. A 2022 study by a life insurance company, Ethos, found while Americans think about death frequently, they do not talk about it. Among other topics considered to be inappropriate or uncomfortable in polite society including money, sex, politics and religion, the study stated people would prefer to talk about anything other than death.

Despite this unwillingness or inability to talk about dying, it is a universal experience. Everyone will die, and will experience the death of people they love, whether they discuss it or not.
There have been increased efforts to start discussions around death and grief recently, as people question established funeral practices and challenge cultural norms. Organizations like The Order of the Good Death and Death Cafe began to give an appropriate forum to talk about more morbid topics.

Caitlin Doughty is a funeral professional and the creator behind the YouTube channel “Ask a Mortician.” In her book, “Smoke Gets in Your Eyes,” she writes about why it matters to talk about these issues and how speaking about death can positively impact grief.

“It is never too early to start thinking about your own death and the deaths of those you love,” Doughty said. “Accepting death doesn’t mean that you won’t be devastated when someone you love dies. It means you will be able to focus on your grief, unburdened by bigger existential questions like ‘Why do people die?’ and ‘Why is this happening to me?’ Death isn’t happening to you. Death is happening to us all.”

I saw firsthand how families were able to address their grief around the death of a loved one when they were better prepared for it. Of course, there are instances of tragedies that catch people off guard, but generally being at least a little prepared for death and funeral proceedings provides more time and mental capacity to grieve the loss.

“It is never too early to start thinking about your own death and the deaths of those you love.”
— Caitlin Doughty

Another important lesson I learned about grief while assisting families is there is no singular way to grieve death.

As I worked answering phones, greeting people and taking information for death certificates, I had the privilege of talking to people of all ages, races and religious affiliations. All had experienced the death of someone they knew, but beyond that, they did not share much in common.

Some people were relieved that an elderly family member was no longer experiencing pain or chronic illness. Some were hysterical over the death of someone lost at a tragically young age. Others came in a numb state or were ready to get down to business.

I spoke to people who wanted to tell me their whole family history or love story. Others hadn’t heard from the deceased in years and had little to share.

One young woman around my age conducted herself with an almost preternatural composure for the entirety of her father’s funeral, only to break down in sobs when it was done. She told me she felt selfish because she didn’t want to take away attention from her dad, but over the course of the previous week, the rest of the family forgot her birthday had come and gone.

One of the questions I heard repeatedly was a variation of “What am I supposed to do? Is this normal?”

But there is no single way to grieve, and no way that is inherently right. Grief has as much to do with the person who died and all they represented as it does with the people who are living.

Over the years, there have been different theories and models created to explain the process of grieving. Perhaps the most well-known is the concept of the five stages of grief.

This model of grieving was originally introduced in the late 1960s by psychiatrist Elisabeth Kubler-Ross. The main takeaway from this framework was people may feel or work through emotions of denial, anger, bargaining, depression and acceptance when facing a loss.

Kubler-Ross updated the concept of the stages of grief over time, writing with David Kessler in “On Grief and Grieving”:

“They were never meant to help tuck messy emotions into neat packages. They are responses to loss that many people have, but there is not a typical response to loss as there is no typical loss. Our grief is as individual as our lives.”

Kubler-Ross acknowledged that people who reach the acceptance stage have not necessarily conquered grief. A misquoting or misunderstanding of the stages has contributed to the idea that a person can work through the stages and then move on.

This framework can still be helpful in letting people know the emotions they feel are valid and acceptable.

“Our grief is as individual as our lives.”
— Elisabeth Kubler-Ross & David Kessler

However, there is another theory around grief that was introduced to me while I was working in the funeral industry which I have found more helpful and accurate to people’s experiences.

The concept of “growing around grief” was introduced by a grief counselor, Lois Tonkin, in 1996. Tonkin had spoken to a mother who lost a child and participated in an Elisabeth Kubler-Ross workshop to address her grief.

Rather than finding that her grief had disappeared as she worked through her emotions, the mother reported it instead stayed the same size, but with time “her life grew around it.”

Tonkin illustrated the model with a simple graph showing a large, white circle representing life, with a smaller, shaded circle within meant to represent grief.

“There were times, anniversaries, or moments which reminded her of her child, when she operated entirely from out of the shaded circle in her life and her grief felt just as intense as it ever had,” Tonkin wrote. “But, increasingly she was able to experience life in the larger circle.”

In the immediate aftermath of a death, it can be hard to imagine life will go on. While I was working, I often saw families over the course of several weeks or months after a death had occurred. With time and further life experiences, their grief did not disappear, but they were able to function and forge on.

Tonkin’s concept of grief is encouraging in these instances because it does not imply a person will forget their loved one or shrink their grief, but rather add to their own life after loss.

“In this way, they continue the process of integrating the loss with their lives and moving forwards,” Tonkin wrote.

Table with a photo of an elderly woman, a cremation urn, and a hand placing flowers.
Cremation is a popular method of disposition, but should it be one of the only options?

It may also become easier to grieve as Americans work toward offering increased options for deathcare and the disposition of remains.

In the past, funeral activities were primarily managed at home, allowing the family to take part in meaningful rituals. Around the time of the American Civil War, the practice of embalming was popularized, and in the years following, deathcare became industrialized and commercialized, moving from inside homes to behind closed doors.

In the 1960s, around the time of Jessica Mitford’s book “The American Way of Death” which criticized the funeral industry, cremation began to rise in popularity. It was seen as a more cost-efficient form of disposition.

Today, burial and cremation are the primary options available to Americans. For those who have not made plans ahead of time, the process falls upon family members who can feel overwhelmed and left without sufficient options.

“Choice doesn’t enter the picture for the average individual faced, generally for the first time, with the necessity of buying a product of which he is totally ignorant, in a moment when he is least in a position to quibble,” Mitford wrote.

The high cost of funerals, along with the limited choice and opportunities for personalization add stress to families and leave them wondering if they made the right decisions.

While I was working, I saw people seek out ways to incorporate creativity into arrangements for their deceased friend or family member, and I saw how satisfying this could be.

There were instances of people bringing in nontraditional items to use instead of cremation urns, including canning jars or teapots belonging to the deceased. The local Indigenous community built their own caskets for tribal members on several occasions, creating something personal through community effort, often emblazoned with farewell messages and signatures.

These were ways to work around the impersonal and often more expensive options available, and they were a truer representation of the person who had died.

Thankfully, though I was only able to offer burial and cremation options while I was working, increased choices should be available to some states soon.

California recently decided to allow alternative disposition options including alkaline hydrolysis, commonly known as “aquamation” and terramation or “human composting.” Human composting will not be available until 2027, as requirements and standards are currently being put in place.

Both options are more environmentally friendly than traditional cremation, and existing terramation companies have shown an interest in involving families in the process and offering personalized service.

Green burials, where a body is not embalmed or buried in a traditional casket are legal, but often cemeteries will require specific items which make green burial impossible. Cemeteries dedicated to green burials or conservation burials are gaining interest, but are still less available than traditional options.

Further education and discussion about these topics can only open the door to providing more options for grieving families to feel they are honoring their loved ones in ways that bring them satisfaction. Through researching and spreading the word about alternative burial and cremation options, we can assist in opening the door for legislation to allow them. This can also lead to pressuring existing businesses to offer a broader range of services.

A skull vase full of blue, white and purple flowers sits next to a sign that reads "people are dying to work with me."
Humor can help too! This was my desk decor at my funeral home job.

I can’t claim that I have attained a level of enlightenment from my experiences in the funeral industry that will keep me from feeling grief when those close to me die. In fact, I know the opposite will be true and their losses will hurt deeply. However, I’ve seen from the example of others that life can and will go on.

I also hope through supporting legislation and education about increased options for deathcare, I may be able to provide my loved ones and eventually myself with an appropriate, fitting end. Personally, I want to be buried in a green burial cemetery or composted!

From what I have learned, I hope I have a better grasp on the concept of my own mortality, and I am able to offer more grace and empathy to others in grief — and to myself. Those are the values I find most important from the lessons I’ve been fortunate enough to learn from both the living and the dead.

Complete Article HERE!

The Imposition of Black Grief

— Prolonged grief is normal—and even necessary.

By Nneka M. Okona

When the pandemic dawned on our shores in early 2020, I neither panicked nor despaired. There was something eerily familiar about how quiet and still the world suddenly felt—how we were all living in a groundless, uncertain reality.

I’d had countless experiences with personal losses in recent years, so I knew how isolating grief could feel. Though this time, we were all sitting in a darkened room, the heaviness of loss wrapped around us like a cloak and bonding us together in more ways than one.

Over time, we’ve developed the language to describe this shared experience—collective grief. This mourning is neither an individual expression nor an experience, but can be felt as an entity that impacts a group of people all at once. For Black people, collective grief has a particular shape, feeling, and shade.

Three Black people embrace while overlooking the silver casket of Conrad Coleman Jr., which is sitting above the burial plot, adorned with flowers.
Friends and family attend Conrad Coleman Jr.’s burial service in Rye, New York. Early in the pandemic, Black Americans were not only disproportionately more likely to contract COVID-19, but also more likely to lose a family member or friend to the disease.

For Black people in the United States, grief and loss are intertwined with our very being. Our ancestors knew the trauma of loss intimately; many of us, myself included, are descendants of those enslaved. The institution of chattel slavery throughout this country—not just in the Southern states—depended upon breaking up families in order to use our Black bodies for labor. We lost so much then. Though we’re generations removed from it now, those losses remain within us, embedded in our consciousness and our psyche, lying dormant in our bodies.

As a result, Black people have experienced the pandemic differently, beginning with the fact that we were disproportionately impacted by this deadly virus. And we have grieved deeply as a result. I released my debut book, Self-Care for Grief, on Aug. 3, 2021. I began writing it in September 2020 when life still felt uncertain, but I wanted to give readers a soft place to land as they grieved. I wanted to remind people that they can grieve in their own way and that there aren’t any rules for how that should look. But that was hard to do knowing the state of the world outside my front door. The seasons were changing, which meant another spike in COVID-19 cases, hospitalizations, and deaths. The hope of a vaccine seemed like a pipe dream at best.

While official messaging encouraged everyone to continue being cautious, many Black people knew this to mean that, once again, we had to save ourselves. Misinformation was high. There wasn’t consistent or accurate reporting about how many people had contracted COVID-19. Guidance on how to protect ourselves—with masks, wiping down groceries, keeping a 6-foot distance—varied depending on the day. We had to bind together to get through, something Black people have always done. If we were going to survive, we needed to grieve, process, and make meaning of our losses. We inherently knew these things, even if many of us couldn’t recognize them at the time.

Grief requires tenderness. Demands it, even. As Black people, being rough or careless with our grief is more of the same indoctrination from Western culture and society. Trying to survive in this capitalistic society teaches us that we should not value stillness or rest. And racism always gives us a reason to be aggrieved and to fight for our humanity to be acknowledged and validated. Honoring our losses—and the grief that follows—means bowing to stillness. It then becomes necessary to have the courage to look at our grief and recognize it for what it is—not a nuisance to be gotten over as quickly as possible, but a force that will forever change us. Grief calls us to bend, to evolve, to integrate the losses that we’re reeling from.

Loss encompasses more than the death of a loved one. We may need to grieve former states of being, old routines, a neighborhood or city we moved away from, a dream we have outgrown or had to let go of, a sense of safety or inner peace, or the end of a relationship with someone who is still alive. The list is nearly as endless as the ways that we can honor our grief.

Marcia Howard, a community member and activist in Minneapolis, Minnesota, straightens mock tombstones in November 2022 in the Say Their Names Cemetery, an art installation that sits in a grassy park one block north of the George Floyd Memorial. Names visible on the tombstones include Philando Castile, George Floyd, Tank Blanding, and more.
Marcia Howard, a community member and activist in Minneapolis, Minnesota, straightens tombstones in November 2022 in the Say Their Names Cemetery, an art installation that sits one block north of the George Floyd memorial. The installation began with 100 names of Black lives cut short by police violence, and grew as the community requested more to add.

A Black Story of Grief

In modern times, there are new things to grieve. Rather than only hearing about the violence of white-supremacist police brutality on news stations or seeing it splattered on the front page of the newspaper each morning, we have the ability to witness it happening in real time via social media. We now have more awareness and more investment in taking a stand against racial injustice, but seeing these old wounds with even older origins so often, so graphically, comes at a cost.

The murder of George Floyd in Minneapolis on the evening of May 25, 2020, was a catalyst for the anger bubbling underneath the surface for most Black Americans to emerge with power and force. We were so tired of soldiering on even when little losses constantly surrounded us; of having to be OK with the unwarranted deaths of our brothers, sisters, cousins, aunts, uncles, mothers, and fathers. We were so tired that “tired” no longer sufficed; we needed another word to encapsulate the full breadth of all it means to hold, all it means to live as a Black person. We wanted to feel safe and to not fall prey to the potential lethality of driving while Black, walking while Black, eating while Black, traveling while Black.

We wanted Blackness in this country to stop equating to a death sentence.

Living with this knowledge is not only heavy but tortuous. It impacts mental health, the ability to build and maintain interpersonal relationships, holding onto employment and performing well. As much as one might think it’s possible to compartmentalize how structural and systemic racism affects Black people, that’s not the case. Robert T. Carter, professor emeritus of psychology and education at Teachers College of Columbia University, pioneered research on the relationship between racial trauma and mental health.

In a 2007 study, Carter found that, as a result of racial discrimination, Black people can develop racial trauma profound enough to be considered a psychological trauma comparable to PTSD, according to the criteria in the Diagnostic and Statistical Manual of Mental Disorders (DSM-5). “Racism can and does create damage to one’s psyche and personality in the same way that being subjected to community violence, being held captive, or being psychologically tortured can create emotional damage,” Carter writes.

Though Carter was one of the first to codify the mental health impacts of racism, five years earlier, psychiatrist and psychoanalyst Hugh F. Butts used the term “racial trauma” to ground further research, study, and understanding in the topic. In a 2002 article, Butts notes that “responses to racial discrimination by African-Americans are often not viewed as severe enough to indicate that these blacks may have post-traumatic stress disorder.”

PTSD from racial trauma can cause hypervigilance, depression, anxiety, and chronic stress, which forces our nervous systems to roar into overdrive.

And yet, more than two decades later, it’s reported that 71% of Black Americans experience some form of racial discrimination in their lives. This number seems low, especially considering how racial trauma actively changes us and the way we live. PTSD from racial trauma can cause hypervigilance, depression, anxiety, and chronic stress, which forces our nervous systems to roar into overdrive. New research from the University of Arizona takes this one step further. In a study published in April 2022, researchers Da’Mere T. Wilson and Mary-Frances O’Connor explored grief and bereavement implicit in the racial trauma Black people live with.

Wilson and O’Connor assert that solely associating grief with the loss of a loved one makes the definition “too narrow in scope.” Per the study, “This lack of representation, plus the prevalent universalist research framework in psychology, has led to a lack of understanding of how the specific contextual factors of living as a Black person, in a Western country like the United States, may differentially impact the experience of grief.” Like Carter, the two also research how grief and loss can catalyze political and social action. They illustrate that the racial trauma, grief, loss, and bereavement that follow are interconnected in an interdependent web.

So, how can we care for ourselves in a world that doesn’t recognize our pain and suffering—and doesn’t want us to be well?

A day after the hate crime and mass shooting at Tops Market, Latisha Rogers is comforted by the community and support of True Bethel Baptist Church in Buffalo, New York, on Sunday, May 15, 2022.
A day after the hate crime and mass shooting at Tops Market, Latisha Rogers is comforted by the community and support of True Bethel Baptist Church in Buffalo, New York, on Sunday, May 15, 2022. Rogers, a Tops assistant office manager, was not only present at the mass shooting, but she called 911 to report the gunman, only to be admonished by the operator for whispering.

How We Rebuild

Black Americans have created moving rituals to help us honor and process those losses. We are a communal people. The strength of the village, not just the heteronormative and very white nuclear family model, is what we lean upon.

When someone dies, Black Americans gather at funeral homes, at churches, at banquet halls. We gather in love. We cry, we eat, we honor their lives. Yet, during much of the pandemic, these beautiful grief rituals have been disrupted. Instead we had to grieve alone in our homes, isolated from our communities, behind a computer screen. Zoom funerals became the norm, shaky cell phones and iPads capturing our grief in unprecedented ways. Within the grief space, there are Black folks meeting the evolving needs of their communities. Breathworker and grief guide Naomi Edmondson lost her grandmother, whom she considered a mother figure, in 2019. “When I lost her, in a way I lost the center of my universe,” she says. “Then having to handle that loss with COVID and the grief surrounding the pandemic, there were so many layers of grief that I was dealing with.”

As a result, Edmondson created a virtual space called Black Folks Grieve as a safe container for both herself and others who look like her to discuss their losses and grief. Every Monday evening, she facilitates a sharing circle for anyone who signs up via her website. “Before I started the group, I was looking for places where I could be in and not only feel like my grief was validated, but I didn’t have to do this intense labor to explain myself,” she says. “The last thing you want to have to do is the work of trying to make someone understand where you’re coming from.”

Fellow grief guide Alica Forneret came into the grief space after unexpectedly losing her mother in October 2016. Submerged in grief, Forneret channeled all she was feeling into Instagram missives about every aspect of grief. She also began consulting with companies on bereavement policies designed to make it easier for employees to cope with grief in the workplace. “How people treat you and your pain, the processing of pain, and your vocalization of that pain, I have found is the most interesting to talk to people about,” Forneret says. “The difference between me showing up to work every day in June of last year and everyone else is very different. The way that we are supported and need care is very different too.”

Now, she sees her work evolving. She’s working on her first book and is building a nonprofit called Pause that will help Black people formalize (and, in some cases, professionalize) their grief work to support those who need it most. Edmondson and Forneret are part of a legion of Black people—many of them Black women—revolutionizing how grief can be tended to. There’s Oceana Sawyer, a former transition guide, who uses Patreon to offer conversations and grief circles about honoring death as a rite of passage. She went from talking about grief on an individual level, before summer 2020, to now talking about collective grief.

She says she started looking at Resmaa Menakem’s work on somatic abolitionism and applying it to grief. “That led me to a deep exploration around how bodies, specifically bodies of the African Diaspora, are metabolizing grief alongside all the other losses that we incur on a daily basis.” This newfound curiosity fueled an expansion of Sawyer’s offerings: In addition to the virtual death cafes she’s led for Black and Brown people, she’s also hosted joy-mapping workshops on Afrofuturism, womanism, the end of the world, and more.

In the realm of academia, Kami Fletcher, associate professor of American and African American history at Albright College, refers to herself as a death scholar. She found her way into death studies during graduate school when her chair told her about an opportunity to act as a researcher for Mount Auburn Cemetery, Baltimore’s oldest African American burial ground. She spent years researching and writing about Mount Auburn and says, “It helped me to learn a lot about cemeteries, the records [that] this space keeps, and what that means to people who are supposed to be invisible in history.”

“I don’t think I realized that folks were using death studies—death, dying, bereavement, and grief—to mobilize and organize in really interesting ways,” she says. In 2018, she co-founded the nonprofit Collective for Radical Death Studies with the implicit aim to decolonize death studies and radicalize death practice. Death work, the Collective’s website states, is anti-racism work. It provides resources and information on death studies, death practices, and deathways, such as the Radical Death Studies Canon, which spans topics ranging from queer death and capitalism to colonialism and genocide. “Our mission is to decolonize death studies, and for us [that] really means to decenter whiteness,” Fletcher says.

There’s also author and end-of-life caregiver Breeshia Wade, who recently penned Grieving While Black: An Antiracist Take on Oppression and Sorrow, about living with racial trauma. And Sundari Malcolm, who hosts the BIPOC Dinner Party, an organization created with the goal of bringing people around (virtual) tables to talk about grief. Of course, there are countless others. The wide-ranging approaches to facing our grief and sitting with it, according to Forneret, is truly something to behold. It’s also something that gives her hope. “The diversity of people doing this work, the different ways they approach their work, and the complexities are so different and deep,” Forneret says. “It feels so rooted. And that’s why I want to support the people in our community.”

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New end-of-life doula services focus on rural, houseless populations

— OHSU School of Nursing alum aims to make end-of-life a social, not medical event

By Christi Richardson-Zboralski

As a hospice nurse, Erin Collins, M.N.E., RN, observed that many of her patients were afraid of dying, in denial of their imminent death, and consequently unprepared for it.

Now, she’s seeking to change that: Collins’ new organization, The Peaceful Presence Project, views compassionate end-of-life care as a basic human right, and is creating a social death care movement through education for clinicians, volunteer-based programs, and an innovative concept called end-of-life doulas.

“As health care providers, it is not always about saving lives at all costs, it’s about supporting someone to live and die well,” Collins said. “That often includes where they want to die and who they want to be present.”

Collins is a certified hospice and palliative care nurse with 16 years’ experience in oncology and end-of-life care. She recently completed a Master of Science in Nursing Education at the OHSU School of Nursing, Portland campus, and was selected as a 2022 Cambia Health Foundation Sojourns Scholar.

The mission of The Peaceful Presence Project is to reimagine the way communities talk about, plan for and experience serious and terminal illnesses. Its approach is based on the compassionate communities model of end-of-life care, which asserts people facing serious illness should spend 5% of their time with a health care professional, and views the end-of-life as a social event with a medical component — rather than the other way around. Their doula program helps fill the 95% of time people aren’t face-to-face with their health care provider.

Doulas are people who are trained to serve. Many people are familiar with birth and postpartum doulas, who serve families during and after the birth of a child. End-of-life or death doulas serve families during the end of the life cycle. End-of-life doula courses provide training in how to be a present and active listener; create a calm and compassionate environment; and provide non-medical comfort measures, such as distraction, guided imagery and repositioning to help alleviate symptoms. Trained volunteers may help with legacy projects, including collages, audio or video recordings, and other ways to display physical objects. When needed, they help with memorial planning.

The trainings emphasize how to facilitate compassionate discussions about death-related topics. In 2023, Collins will develop a continuing education program for rural health care workers through her Sojourns Scholar project to improve access to palliative care in communities where specialists often don’t exist.

Community-based end-of-life support

Lily Myers Kaplan speaks highly of The Peaceful Presence doula training she took in 2022. Meyers Kaplan is author of two books on loss and legacy, co-founder of The Spirit of Resh Foundation, the Ashland Death Café and The Living/Dying Alliance of Southern Oregon.

“There was a particular session on approaching end-of-life with veterans, which helped me see the need for diverse approaches to different populations. The difference in end-of-life support between those who have lived in a rural setting, caring for the land, or being actively reliant on their physicality versus someone who has had a more traditional or urban life is quite distinct.

“For example, caregivers who may be responsible for vast swaths of land — anywhere from 20 to 80 acres or more — need support from others who understand their needs,” said Myers Kaplan, who lives in the Applegate Valley, a rural area of Oregon that includes large stretches of land that provide solitude and a level of independence that most urban lifestyles don’t experience.

A caregiver in Depoe Bay reluctantly accepted help from The Peaceful Presence Project after his wife got him on board. After several long years of treatment and many ups and downs, Ray Burleigh’s adult daughter, Becky, had reached a point in her cancer treatment where it no longer worked. Burleigh had strong doubts when the hospice nurse brought up the topic. However, his wife, Jeni, said yes to the help.

With the support of two death doulas from The Peaceful Presence Project, Elizabeth and Erin, the Burleighs found some measure of relief. The death doulas told the family they would bring community support from around the Bend area.

“I was still not convinced. We needed practical help. Becky’s house is hard to heat and she was concerned they were spending too much money on keeping the house warm. It’s heated by a wood stove,” said Ray. “I told them to bring us some wood, not expecting anything. Two nights later, a truckload of wood came — not just one bundle, a truckload. I was shocked! We couldn’t have done this without Elizabeth and the doulas.”

Without the doulas’ help, Ray said they would have had to put Becky in the hospital, and possibly ended up sick themselves.

“The doulas provided night-shift help because we weren’t getting any sleep. They helped with groceries, created a schedule for visiting hours, and the fire,” he said.

Elizabeth and Erin identified 25 people in the city of Bend who were willing to help them out, including neighbors, and many people who are now friends of the Burleighs. Jeni’s family from the same area were also there to help.

Because of his time alongside these doulas, Ray has decided to take The Peaceful Presence Project doula training.

End-of-life care for under-resourced communities

Lora Munn, a yoga teacher who is National End-of-life Doula Alliance proficient, took The Peaceful Presence Project training in 2021.

“End-of-life care is not only being talked about in rural communities, but also actually being spread throughout rural communities thanks to the folks at The Peaceful Presence Project,” she said.  

Munn lives in White Salmon, Washington, and serves all communities located in the Columbia River Gorge. She said she understands that “folks in rural and houseless communities may not have access to resources for the dying and their loved ones in the same way that urban communities do. Because of my education and training through The PPP, I am able to provide these necessary services to my small community. Through my training, I learned how to provide compassionate care for all beings, regardless of housing status or location.”

Because palliative and end-of-life care resources are sparse within rural and houseless communities, Collins and her team facilitate advance care planning to encourage these populations, and others, to think about their end-of-life experience.

“Parts of the state where there is no hospice care or even palliative care need more resources, and one way to address that is to have support embedded in the community,” Collins said.

Through two grant-funded projects, doulas and public health interns have been trained to hold advance care planning “pop-ups” at a navigation center for people experiencing homelessness, as well as in rural health clinics. Navigation centers are low-barrier emergency shelters that are open seven days per week and connect individuals and families with health services, permanent housing and public benefits.

Conversations about what their death experiences could entail are uncommon for people experiencing homelessness, Collins said. The general population tends to choose a spouse or family member as their medical decision-maker. But within the homeless population, a non-family member or someone in their so-called street family is more likely to be their choice. In the absence of a named decision-maker, the hospital may call an estranged family member or someone with whom they are not in contact.

“Equitable care means providing equitable services,” Collins said. “This includes advance care planning for people who are experiencing homelessness. We found that many of these folks have never been asked what their preferences are at end-of-life.”

Educating health care professionals about palliative care

Although it’s important to educate people in the community, it doesn’t stop there. Collins emphasizes the importance of education for all health professionals about serious and terminal illnesses — which is not traditionally an in-depth part of the health care curriculum.

“Nurses and physicians don’t always know how to have those conversations. Palliative care should be part of all health education,” Collins said. “Not just a specialty, but a standard part of education.”

To get participants thinking about ways to support their patients, The Peaceful Presence Project asks them to reflect on key questions: How do you ask someone about what they want if they are dying? How can you have a compassionate conversation?

“Training in communication skills allows you to feel empowered as a provider and as a fellow human being,” said Eriko Onishi, M.D., an assistant professor of family medicine in the OHSU School of Medicine and a palliative care physician at Salem Hospital. “It makes you a better listener through your professional sense of curiosity about other people. You feel as if you are truly walking alongside your patients, guiding them in the right direction, instead of just feeling the way blindly, guessing at each step.

“It’s important to understand that it isn’t about exercising power or control over patients,” Onishi continued. “Rather, it is using this powerful communication tool to support everyone involved, to help them to feel safe because the situation itself is under control.”

Onishi is passionate about the need for such conversation skills training.

“To be a clinician, both knowledge and communication skills are equally essential — it’s never a one-or-the-other choice,” Onishi said. “As a physician, my job is to provide medical guidance to the patient and their family, guided by the best intentions and a caring heart. If I cannot do all of these things, I cannot do my job.”

Ultimately, Collins said, it’s up to the individual patients to discuss how they want to experience their end-of-life, knowing that flexibility and adaptability are key. Having a plan is important, and when things don’t go according to plan, community-based support for death and dying can alleviate a stressful process for all involved — providing what people need to live and die well.

Complete Article HERE!