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Researchers find racial disparities in intensity of care at the end of life

[A]frican Americans at the end of life have significantly higher rates of hospital admission, emergency department (ED) visits, and discontinuing (also known as disenrolling from) hospice care than whites, according to a new study by researchers at the Icahn School of Medicine at Mount Sinai published today by the Journal of the American Geriatrics Society.

Researchers examined whether race played a factor in rates of hospitalization, ED visits, and disenrollment from hospice. Although previous studies have found that African American patients have higher rates of hospitalization after enrolling in hospice than white patients, it was unknown if racial differences were linked to other differences in outcomes in hospice care, whether administered in an acute hospital setting or ambulatory setting, and if race plays a significant role in end-of-life care.

“While differences exist between hospice organizations in how frequently their patients are hospitalized, including time in the emergency room, and disenrollment from hospice, these patterns do not explain racial disparities between blacks and whites in hospital use and hospice disenrollment,” says Melissa Aldridge, PhD, MBA, Associate Professor and Vice Chair for Research in Geriatrics and Palliative Medicine at the Icahn School of Medicine at Mount Sinai.

Dr. Aldridge and her collaborator, Jessica Rizzuto, MPP, a student at the Icahn School of Medicine, used data from a longitudinal cohort study of Medicare beneficiaries enrolled in a national random sample of 577 hospices around the country from the National Hospice Survey from patients in active treatment until death (2009-2010). The national sample of 145,000 Medicare beneficiaries who had enrolled in these hospices at the end of life was composed of about 92 percent white patients and 8 percent black patients. Half of the hospices were for profit, and 25 percent were members of a chain of hospices. Approximately 90 percent of the patients in the study were served by hospices in an urban area. Researchers estimated the proportion of each hospice’s patients who experienced the following utilization-based outcomes from the time of their hospice enrollment to their death: one or more hospitalizations, one or more ED visits, and hospice disenrollment. They compared the unadjusted proportion of black versus white hospice enrollees with each of these outcomes.

“We found that black hospice patients were significantly more likely than white hospice patients to be admitted to the hospital (14.9 percent vs 8.7 percent), to go to the emergency room (19.8 percent vs. 13.5 percent), and to disenroll from hospice prior to death (18.1 percent vs. 13.0 percent). These patterns remained after accounting for patient illness, demographics, and type of hospice from which these patients received care,” Aldridge says. “These higher rates of emergency department use, hospital admission, and hospice disenrollment by blacks compared with whites were attributable to racial differences within hospices rather than systemic differences between hospices in these outcomes.”

The role of a hospice is to enable individuals to remain at home during the terminal phase of their illness while receiving support, pain and symptom management, and counseling for themselves and their families. These findings matter, researchers say, because higher-intensity care at the end of life may adversely impact the quality of life of hospice enrollees and their families and increase the burden on caregivers.

The data did not allow investigators to identify the reasons for hospital use and hospice disenrollment, but they said these could occur for a number of reasons, including patient and family preferences for care, patient and provider communication about the role of hospice care, availability of resources, and caregiver burnout.

Researchers say more information is needed on hospice outcomes for patients of other races, as less is known about Asian, Pacific Islander, or Native American .

“Our findings underscore the need to better understand racial disparities in outcomes after hospice enrollment,” says Dr. Aldridge. “Culturally sensitive interventions that increase understanding of hospice, address shortcomings in provider communication, and improve caregiver resources could help decrease these persistent differences in outcomes.”

Complete Article ↪HERE↩!

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Dementia Patients and Grief

 

[T]he death of a loved one is difficult for anyone, but it is a special challenge when someone in the family has dementia. It’s hard for family members to know how and when to tell the person with dementia about the death. And what should they do when the person doesn’t remember?

Coping With Losses

People with dementia have had many “little deaths” in the course of their disease — things like losing their independence and the ability to drive, read, cook, or enjoy hobbies. Memories and relationships are huge losses.  These losses are stressful for people with dementia and their families.

How people with dementia cope with loss is affected by many things, including: the stage of their dementia, their relationship to the person who has died, how often they were in contact with that person, and their personal way of grieving

Grief Process

For people without dementia, recovery from a death usually involves accepting the reality of the loss, learning to live with it, and finding a new “normal.”  For most, the pain of the loss can transform into beloved memories.  For someone with dementia this process is often impossible.

People with dementia who are grieving are often agitated and restless. They may sense that something is not right, something is missing. They may confuse one loss with another. A recent death may stimulate the memory of loss from childhood. It can be stressful for family members to decide when and how to tell them about the death of a loved one — and even how often to tell them. Repeatedly telling a person with dementia about a death can make family members’ grief more painful.

Telling About a Death

Here are some hints for telling a person with dementia about a death:

    • Tell the news as soon as possible. They will sense that something is wrong and need information to understand, even if just for that period of time.
    • If you are too emotional to talk to them, find someone else — maybe a friend or healthcare professional.
    • Choose a time to talk when the person with dementia is well rested.
    • Use short, simple sentences. Don’t give too many details; this may overwhelm them.
    • Answer questions as honestly as possible.
    • Use clear words like “died” instead of “passed away” or “at peace now.”
    • Try not to protect the person from the truth by suggesting that the person who has died is away and will return later. This can cause worry and agitation later when the person does not return.
    • You can support them with physical touch, such as a hug or holding hands.
    • Consider involving the person with dementia in funeral planning, assigning a simple task. This will help the death be more real for them. They may recognize the rituals around death and act appropriately.
    • Plan for someone to be with the person during services who can also take them out if they become agitated.

Accepting Death

Here are some ideas of ways to help the person with dementia accept the death:

    • Speak in the past tense about the person who has died. For example, “I loved Mom’s holiday cookies.”
    • Talk with them about the person who has died and express your sadness. “I sure miss Dad. He always made birthdays so fun, didn’t he, Mom? Remember when he….” Bring out pictures and tell stories if this helps their grief process.
    • Accept how often they want to talk about the person who has died—perhaps frequently, not much, or maybe not at all.

If over time they continue to ask for the person who has died, there are some things you can do. In the beginning, gently remind them that the person has died. If reminding them becomes upsetting, you can try these ideas:

    • Respond to the emotion under their words, feelings like sadness, longing, fear, distress, suspicion, anger, concern, or confusion. You can respond to what you see:
      • “You sound really frightened (or lost, or angry, etc.) to me. Let me help you with that.”
      • “You must really be missing her. Tell me what you miss most.” Share your own feelings: “I miss her, too.”
    • Check their mood at the moment. If the person is unaware and not distressed, you don’t need bring up the reality of what has happened.
    • Look for patterns in the times they ask for the person who has died. Look for an unmet need. For example, if the person who has died usually brought them coffee in the morning, the change in this routine could be distressing and remind them that their loved one is not there.
    • Use distraction only when other ways of dealing with their grief are not working.

Each family has to find what works for them, and then try to be as consistent as possible. You may want to write out a simple plan for all family members and visitors to follow.

You can be most supportive to the person with dementia if you also take care of your own needs and get support.  We encourage family members to find support to help them cope with the painful, frustrating, lonely and sad feelings that they may feel. Supporting the person with dementia takes patience, but family members should remember to be patient with themselves as well during this stressful experience.

Complete Article ↪HERE↩!

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Death Without Duality: Three Both/Ands at the End of Life

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[D]ying, like living, is not an either/or affair. It’s a both/and. Which is part of what makes it all so maddening for the floundering human who craves the comfort of dualities, of right and wrong, of fail-proof instructions.

I was reminded of this by some of the masters this month when I had the honor of hosting the End Well symposium in San Francisco. Twenty-eight speakers took the stage and talked about their experiences of almost dying, or treating the dying, or mourning someone who has died, or caring for the caregivers, or trying to shape policy or redesign systems or teach people about dying and/or do some of these simultaneously. There was some anger, and no small amount of sadness of course, but also a surprising amount of laughter. It turns out that we are funny right to the end.

Here are three both/and axioms that I heard echoed most often from people with a hugely wide range of professional backgrounds:

1) Reckoning with one’s life at the time of death is both the simplest thing in the world and the most complex.

Buddhist teacher and co-founder of the Zen Hospice Project, Frank Ostaseski, put it beautifully:

“At the end of life, it gets really simple: Am I loved? Did I love well?”

He’s right. Those questions are incredibly simple. As are the “four things” one can say — “Please forgive me,” “I forgive you,” “Thank you,” and “I love you” — at the time of death, popularized by Ira Byock. One of the huge, unique gifts of facing the end of life — whether your own or someone you love — is that the urgency for healing is undeniable.

But the dynamics that spark and rot and flow and flutter underneath those questions are anything but simple. They are as complex as human relationships as a whole, which is to say very fucking complex. The answer to the question of whether I am loved may seem obvious to an outsider, but if I’ve never felt loved in the right way by the one person I needed it most from, I may not be capable of a “yes.” Even at the time of death, especially at the time of death, we are not logical creatures.

And to answer whether we have loved well is perhaps an even more charged and challenged task. We carry our regrets and sense of relational inadequacy around for decades and then, in the end, are asked to lay them down and surrender to our own imperfection. A tall order. The tallest perhaps. Dr. B.J. Miller, former executive director of the Zen Hospice Project and a clinician, teaches:

“If there is any enemy at the end of life it is shame.”

If we can’t shed our shame, it makes it hard to go. The power in the dying process, from what I gather from these wise souls, is acknowledging the complexity underneath or behind the simplicity and still managing to grace one another with the forgiveness and recognition that we all so desperately crave. It is the kind of emotional courage that transcends death.

2) Our job, when caring for the dying, is to ease suffering, but also recognize that it is a source of meaning for many people.

B.J. also said, “I wouldn’t wish a lack of suffering on my worst enemy. There’s no way to learn.”

He knows a bit about it, having had three limbs amputated and survived near-lethal burns on much of his body after an accident in college. His own time in hell was incredible preparation for a lifetime of treating patients and talking with people about facing death.

Some of us have an inclination to romanticize death. It’s the peak of drama, no doubt — the final scene. But of course it is not all buzzer beater catharsis and mystical visitations. It is sometimes choking and seizing and terrible, ugly, unbearable pain. In a word, suffering.

Now the role of palliative care, but all health care really, is to ease suffering. This is true and important and so often lost in our current system, which too often feeds the wrong motivations in otherwise decent and smart humans. We have to redesign the system so that easing suffering is the heart of everything we do, or as designer Ivor Williams puts it, “Death involves everyone. Design accordingly.”

And yet, B.J. Miller would not be B.J. Miller without his suffering. None of would be any of us without our suffering. It is what erodes our delusions and softens our hubris and strengthens our capacity to resist duality and blame. It is the fires in which we are all forged.

So that, too, we must remember. Which doesn’t mean easing off on pain meds, but it does mean witnessing suffering as a sacred and necessary part of being human, even as we try to work with its ferocity and sit with the one being visited at this particular moment. Or as Dr. Lucy Kalanithi, a clinician, beautiful speaker, and widow to Paul Kalanithi, author of When Breath Becomes Air, put it:

“A gift we get to have in medicine is to be witnesses. It’s a front row seat to the human condition.”

3) When you die, you are the most alone you will ever be, and yet you cannot do it well without the gift of others.

Think about it: There is no journey more solitary, by definition, than that of dying — unless you Thelma-and-Louise it. Just as you have lived in your body alone all your life — experienced its holy and wholly specific alchemy of aches and pains and pleasures — you and only you leave that body at some unpredictable moment. (As I write this, I’m reminded how otherworldly pregnancy is, a moment when women actually do, in a sense, share their solitary experience for 10 strange months.)

In any case, accepting the solitude of it is probably key to surrendering to it. You have to go it alone, at least from a purely physical sense.

And yet, to die well is to die together. Or at least surrounded by people who care for you in your time of exquisite vulnerability. Hopefully these are people who have known you at your most robust, people that you have cared for, people you have eaten and drunk too much with and laughed beside and tickled and fought with and repaired again. Hopefully these are people who know your wishes and will fight like momma bears to see them through.

In one study, 66 percent of people said that the thing they feared most at the moment of death was pain. Understandable. And not particularly surprising. Do you know what topped that fear? The fear that they would be a burden to their family members — logistically, psychologically, financially.

Dr. Aditi Mallick says, “The things that scare us the most about death are at the core of what it means to be human.” Indeed, we fear being dependent on others, being inconvenient and messy and powerless, our whole lives long. And when we die, this fear becomes epic. Our power lies in making peace with it. If we live like we will one day die, then we can’t help but create relationships that are loving and strong and imperfect and they can weather even this, the final test of the human condition.

As B.J. puts it, “The end of life is a call to learn how to be loved. The hardest thing of all.”

Complete Article ↪HERE↩!

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Keeping the Peace While Settling a Family Estate

Yes, you can settle a family estate without fighting. Here’s how.

 

[I]f a family member has passed away and his or her will or trust is in the midst of being settled, emotions and tensions within your clan may be high. Relatives are grieving, but at the same time, decisions regarding the fate of the estate must be made. 

Siblings may squabble over their “fair share” of the estate, a surviving spouse may face resistance from the deceased’s children from an earlier marriage, estranged family members may come out of the woodwork, and more. It may seem unlikely to maintain family harmony during such a challenging time.

Fortunately, a few key interpersonal tactics, as well as some practical solutions, can help keep arguments to a minimum, says Susan Lill, Senior Regional Fiduciary Manager with Wells Fargo Wealth Management. “Managing conflict generally boils down to good communication among family members, and perhaps some smart mediation-type skills,” she says. 

“A sense of transparency can help allay concerns for beneficiaries. Many misunderstandings arise when family members don’t understand the timeframes for settling an estate, or feel that they have not been kept in the loop,” she says. 

The following are a few of the most common estate-settlement conflicts and some potential solutions to bring harmony to all those involved.

1. Squabbling over personal items
“You’d be amazed at how often siblings are fine about splitting millions of dollars in stock shares, but practically get into fist fights about one family vase,” says Lill. Because dividing personal property is often the most difficult part of settling an estate, Wells Fargo Wealth Management has specialized tangible property experts. They can help families when the bank serves as executor, trustee, or agent for the executor.

Peacekeeping tactics: It may feel a bit extreme, but Lill suggests having the personal representative/trustee change the locks on family and vacation homes while the estate is being settled. “Tell family members you’re just trying to make sure no one removes favorite items before anyone else, in an effort to avoid major arguments,” she says.

Next, decide on a reasonable way for family members to split items not clearly delineated in the will or trust — from vehicles to pocketbooks, suggests Lill. One option: Have family members write down 10 items from the estate they would most like. If someone wants an item that no one else lists, it’s theirs. 

For overlapping items — and any other physical items left in the estate — consider taking a round-robin approach, allowing family members to take turns selecting items. Depending on the will/trust language, or the decision of the personal representative, McDermott says you could deduct the value of tangible items from each family members’ share of the estate. That way, no one feels they’ve gotten less than “their share.”

2. Impatient beneficiaries
Maybe you have a cousin who is tight on money and wants his inheritance well before the estate can be settled. Or perhaps two siblings inherit a vacation home; one wants to sell it immediately even if the market isn’t great, while the other wants to wait and sell later at a potentially higher price.

Peacekeeping tactics: A modest “advance on an inheritance” can help calm antsy relatives. “Keep in mind that the estate account will need to cover expected taxes, medical bills, and other fees, so leave enough in the account to cover that — and be sure to document the advance as part of paying out the estate,” says Lill.

3. Unequal distribution of assets
One beneficiary might be left a smaller share of the estate for a variety of reasons. For instance, maybe one adult child is financially successful and the parents didn’t think they needed as much help. 

Peacekeeping tactics: “In some situations, it’s helpful if benefactors talk to family members while they (benefactors) are still alive or leave a side letter with their will or trust that explains their reasons for treating beneficiaries unequally,” says McDermott. If that wasn’t done, consider bringing in a trust professional — either formally, as a co-fiduciary if the estate allows it, or informally, as a family advisor. This person may be able to objectively explain and help manage the disparity, rather than pitting family members against each other.

Overall, remember that settling a family estate can be emotionally challenging. A reasonable goal is to get through the process without unnecessarily damaging relationships — and without incurring a lot of expenses settling disagreements.

“Give family members a little extra grace and understanding during this process, since everyone grieves differently,” Lill suggests. Also, when an estate settlement proves particularly challenging for a family, Lill suggests bringing in professionals to take on settlement tasks and help resolve disputes. “That can be a great way to preserve family harmony.”

Complete Article ↪HERE↩!

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Things I Wish I Had Known When My Dog Died

By JEN A. MILLER

[O]n Jan. 4, 11 years and 26 days after I walked out of an animal shelter in New Jersey with a little white and brown dog attached to the end of a brand-new leash, she died. On this day, an undiagnosed tumor pressed down on Emily’s brain and told her that she needed to escape, which made her usually soft, cuddly and often napping body go wild, endangering herself and me. The humane thing to do was put her down.

I don’t think anything could have prepared me for that moment, or the searing grief that followed. But if I could go back in time to console myself, I would tell myself these six things:

Most people will say the wrong thing. They will talk about dogs they knew and loved and put down, too, or, if they haven’t walked through this long, lonely tunnel yet, about how they can’t possibly imagine losing their very alive pet, which reminds you that yours is dead. They will also ask how old she was, and when you say 15, they will say, “Well, it was a good long life,” as if the ending of it would be less painful because of how long you were together.

They may tell you other dog death stories, too, like the one about the dog who was so excited to be home from vacation that he bolted out of the car and was immediately run over while the whole family watched — stories that imply it could have been worse. They will shove shelter listings for other Jack Russell terriers at you, as if another dog could slip into that perfect little spot left by your beloved one-of-a-kind pet.

Guilt overwhelms. I still tell myself that I killed Emily, despite the veterinarian telling me, after her body had been taken away, while I gripped both a counter and a vet tech to keep from collapsing, that all four of her paws had been bloodied as she had clawed at the floor, the door and the ground during her manic and desperate attempt to get away from my home. There is guilt, too, over the relief of no longer having to take care of a dog who was on multiple medications and who had arthritis, two defective heart valves and pulmonary hypertension.

You will become unmoored. I adopted Emily soon after I became a freelance writer, and I wrote three books with her by my side. She was the metronome to my life. With her gone, I floated through a space she no longer occupied but haunted with every little white hair found on my blankets, on the floor, in my shoes. Once, in the first week following her death, I came up from the basement and looked at the spot where she would usually be waiting. I called for her with the foolish notion that she’d appear at the top of the stairs. But of course, no: just another sledgehammer reminder that she was really gone.

Grief is exhausting. Last fall, I ran two marathons and an ultramarathon. After Emily died, I couldn’t drag myself through three miles, not to mention find the energy to get out of bed, put on clothes that were not my pajamas and shower at regular intervals. I pushed off assignments because the idea of putting my fingers to the keyboard was inconceivable when Emily wasn’t sleeping on her bed in the corner of my office. These were wretched, grief-stained days, surrounded by a deafening silence.

I went back into therapy after she died and was told I was depressed, which wasn’t surprising, as I had started to slip into bed at 8:30 p.m. and not get up until half a day later. Losing a companion and your routine all at once, especially if you’re single like me, could throw anyone into a tailspin.

It will get better. You won’t want to hear it, or believe it, because the pain is so suffocating. It does ease, though, almost without you noticing it.

But still, it slaps back. This may happen at predictable moments, such as when you decide to sell her crate, and sometimes not. Soon after Emily died, I got on a plane and went to Florida to bake out the pain with all-day poolside sessions punctuated by midday drinks. It worked, somewhat, but on my last night there, my face cracked open at the World of Disney store when I saw a mug with the character Stitch that said “brave” on one side and “loyal” on the other. Only the cashier noticed that I paid with tears and snot running down my face. I then ran out of the store to stare at a lake.

These days, I get up, I brush my teeth, I write, I run. I smile now and laugh sometimes. The pain still catches me, though, and I can now more clearly see why: I loved that dog, and in giving a scared, abused, imperfect Emily a home, she loved me back, and together our lives both bloomed. The loss of that joy is why the pain is so acute — and why, at some point in the maybe not so distant future, I’ll go back to that animal shelter with a brand-new leash, and do it all over again.

Complete Article ↪HERE↩!

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The Drift Called the Infinite: Emily Dickinson on Making Sense of Loss

Reflections on silence and eternity from the poet laureate of death.

By Maria Popova

“The people we most love do become a physical part of us, ingrained in our synapses, in the pathways where memories are created,” poet Meghan O’Rourke wrote in her stirring memoir of losing her mother. More than a century earlier, another poet with a rare gift for philosophical prose reflected on mortality in the wake of her own mother’s death.

Emily Dickinson (December 10, 1830–May 15, 1886) was about to turn fifty-two when her mother, after whom she was named, died. A stroke had left her paralyzed and almost entirely disabled eight years earlier. Despite her lifelong infirm health, her disinterest in the life of the mind, and the surges of unhappiness in the Dickinson home, Emily Norcross Dickinson had been attentive and affectionate to her daughter, igniting the poet’s little-known but ardent passion for botany and prompting her to write that “home is a holy thing.”

Although a contemplation of mortality haunts nearly all of Dickinson’s 1775 surviving poems in varying degrees of directness, her mother’s death forced a confrontation with mortality of a wholly different order — loss as an acute immediacy rather than a symbolic and speculative abstraction.

In a letter to her cousins penned shortly after her mother’s death in November of 1882 and found in The Letters of Emily Dickinson (public library), the poet writes:

Mother’s dying almost stunned my spirit… She slipped from our fingers like a flake gathered by the wind, and is now part of the drift called “the infinite.”

We don’t know where she is, though so many tell us.

Emily Dickinson, daguerreotype, circa 1847.

Even as a child, Emily had come to doubt the immortality so resolutely promised by the Calvinist dogma of her elders. “Sermons on unbelief ever did attract me,” she wrote in her twenties to Susan Gilbert — her first great love and lifelong closest friend. Dickinson went on to reject the prescriptive traditional religion of her era, never joined a church, and adopted a view of spirituality kindred to astronomer Maria Mitchell’s. It is with this mindset that she adds in the letter to her cousins:

I believe we shall in some manner be cherished by our Maker — that the One who gave us this remarkable earth has the power still farther to surprise that which He has caused. Beyond that all is silence…

Writing less than four years before her own untimely death, she ends the letter with these words:

I cannot tell how Eternity seems. It sweeps around me like a sea… Thank you for remembering me. Remembrance — mighty word.

In another letter from the following spring, penned after receiving news of a friend’s death, Dickinson stills her swirling sorrow the best way she knew how — in a poem:

Each that we lose takes part of us;
A crescent still abides,
Which like the moon, some turbid night,
Is summoned by the tides.

She adds a sobering reflection on the shock each of us experiences the first time we lose a loved one:

Till the first friend dies, we think ecstasy impersonal, but then discover that he was the cup from which we drank it, itself as yet unknown.

Complement with a collection of moving consolation letters by great artists, writers, and scientists ranging from Lincoln to Einstein to Turing, psychoanalyst Adam Phillips on how Darwin and Freud shaped our relationship to mortality, Seneca on the key to resilience in the face of loss, and this unusual Danish picture-book about death, then revisit Cynthia Nixon’s beautiful reading of Dickinson’s “While I was fearing it, it came” and Dickinson’s forgotten herbarium — an elegy for time and mortality at the intersection of poetry and science.

Complete Article ↪HERE↩!

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People are hiring doulas to help them die

By Molly Shea

Chad Lewis charges $20 to $25 an hour to assist the gravely ill and their families.

[W]hen Chad Lewis’ mother passed away seven years ago from complications from diabetes, he couldn’t stop thinking about her death. “It wasn’t loving and sweet,” he says. “It was chaotic and angry and scary.”

So Lewis, a 39-year-old who lives in Astoria, set out to find a better way to process the end of life, ultimately making a career shift from Broadway stage manager to death doula.

Doulas who aid women in giving birth have been trendy for years, but now a different type of support person is helping people navigate life’s other major passage. Dying people and their loved ones are hiring death doulas to help them coordinate end-of-life care and vigils, plan funerals and provide a sympathetic but unattached ear.

The profession first came into being in the early aughts and is growing increasingly popular. In 2014, Suzanne O’Brien launched the New York City-based Doulagivers, an online training program for death doulas.

“I can hardly keep up with demand,” says O’Brien, who also holds monthly seminars at an Upper West Side branch of the New York Public Library.

The process usually starts with a patient deciding how they want to die and outlining that with the doulas.

“It’s similar to a birthing plan … Where [do] you want to die? What kind of room you want to die in? What [do] you want to be looking at? What [do] you want it to smell like?” says Shelby Kirillin, 41, a Richmond, Va.-based death doula. She charges between $1,000 and $3,000 as a retainer fee, and asks for payment upfront to avoid chasing down money posthumously. She’ll also work pro bono if a situation merits it.

The “scary” death of Chad Lewis’ mother led him to become a doula.

“I had one young girl say she wanted to die in a yurt,” says Kirillin of a client who’s currently planning her own death. The girl’s cancer condition makes a yurt too impractical, so Kirillin is getting creative. “We decided on mosquito netting over her bed, and twinkle lights to look like stars.” After she takes her last breath, her loved ones will put wildflowers in her hair.

Death doulas also help out after someone passes. Lewis, who charges $20 to $25 per hour, likes to create a basic plan to take care of issues such as child care, grocery shopping and bill payment, to clear up mental space for grieving families.

And more than anything, the professionals help patients process what they’re going through.

“Families buffer pain — you hate to see people you love in pain. And doulas aren’t buffers,” says Kirillin. “Instead of saying, ‘OK, let’s see if we can give you meds,’ I’ll say, yeah, ‘I bet you are in pain. Tell me about it — what does it feel like?’”

When Richmond resident Mel Titus’ best friend of 31 years, Kim, was entering the final stages of her battle with cervical and breast cancers last year, they were introduced to Kirillin.

They were skeptical at first, but Kim (whose last name is being withheld for personal reasons) decided on a death doula so she could manage her death the way she did her life. “She was a processor,” says Titus. “She really liked that she could come up with a plan and do things a certain way.”

And for Titus, Kirillin provided emotional support during an impossible time. “I would have tough days, and I’d call Shelby, and she’d walk me through it,” she says.

Kirillin helped the duo plan Kim’s visitor schedule, and what music they’d play and books they’d read in the final days. Taking care of logistics freed them up to reminisce about Kim’s life, and even laugh about how things were going. “We actually had some funny moments, believe it or not,” says Titus. “It’s sad, but it can be a happy thing, too.”

Complete Article ↪HERE↩!