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Doctors and the D Word:

Talking About Death Is an Essential Skill — and One Often Lacking

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The vast majority of physicians enter medicine because they want to help people, so it’s not necessarily surprising that many are uncomfortable discussing death with their patients. However, when that discomfort reaches so far as to prevent conversations that patients need and want to have, it’s a problem, experts say. 

A physician’s discomfort with talking about death can go as far as avoiding the word itself, says Helen Stanton Chapple, PhD, RN, an associate professor at the Creighton University Center for Health Policy and Ethics and College of Nursing in Omaha, Nebraska. Although she’s been out of clinical practice for about a decade, Dr Chapple recalls the euphemisms many providers used to avoid the subject.

Dr Chapple explained that the closest she’s heard physicians come to acknowledging that a patient is dying is saying that, “the illness is not survivable,” she told Medical Bag. “Part of it is that they don’t get any training, part of it is that they don’t see it modeled when coming up in residency training, and part of it is that they dislike trying to tell the future. That’s a problem.”

Fortunately, things are beginning to change in terms of the training and education physicians receive. The Palliative Care and Hospice Education and Training Act (PCHETA, H.R. 1676), introduced to Congress by Representative Eliot Engel in 2017, for example, proposes amending the Public Health Service Act to beef up support for palliative care, including training for healthcare professionals.

“It’s still widely variable at different medical schools and institutions, but I think it’s becoming much more accepted that this is part of the basic skills a physician needs,” said J. Randall Curtis, MD, MPH, a professor of medicine and director of the Cambia Palliative Care Center of Excellence at University of Washington School of Medicine in Seattle.

“More and more medical students and physician are being trained in giving bad news and how to have these conversations,” Dr Curtis told Medical Bag. “But it doesn’t make these conversations easy. You’re working with a patient, and you have to give them bad news. It’s hard even if you’re trained and good at it.”

And change is slow, says Lori Bishop, RN, MHA, vice president of palliative and advanced care at the National Hospice & Palliative Care Organization in Alexandria, Virginia.

“I think there’s a concern or perception that some of these conversations could reduce hope or take away hope,” Ms Bishop told Medical Bag. Research suggests the opposite, she adds. “People with serious illness are really expecting to have these conversations and want to have them, but they’re waiting for the doctor to initiate that conversation, so sometimes it doesn’t happen.”

Interestingly, clinicians perceive difficulties with patient and family responses as bigger barriers to these discussions than their own skills and limitations, but patient research does not quite jibe with those findings.1

A small, qualitative study published in 2015 found that “many participants were very comfortable talking about their own death.”2 The authors concluded, “Being able to talk about end-of-life wishes and know how to support people who are dying or bereaved are important to many people, and they would welcome interventions to facilitate this at a societal level.”

It’s not just patients waiting for the physician to take the first step. Providers across the medical profession tend to believe that physicians should lead the discussion, both because of their medical training and because of their ability to answer clarifying questions about the patient’s prognosis, suggests a 2016 qualitative study in the American Journal of Hospice and Palliative Care.3

Broaching the topic as early as reasonably possible also gives patients more time, information, and opportunity to make the decisions they want based on their values and their place in life, Ms Bishop added.

“I may choose a different path once I start a conversation if I know what my risks are and where I’m at in the trajectory in a disease,” Ms Bishop said. “You miss an opportunity for some pretty rich discussions when you don’t have these conversations. It’s not just a medical conversation. It’s really in context of that whole individual and where they’re at in their life and what matters to them.”

Why Doctors Delay

The reasons for physicians’ discomfort with conversations about dying are as much cultural, social, and systemic as they are personal, Dr Chapple told Medical Bag. The health care system is set up in such a way that necessary changes in a care plan do not always keep pace with changes in a patient’s condition, particularly if those changes occur overnight or on weekends when the primary medical team is off. It’s attending physicians who make the decisions, not the nurses or residents who may see the patient — and their deterioration — more frequently.

“Part of it is nurses having to witness and inflict the suffering and getting sick of it when they think there’s no good outcome,” Dr Chapple said. “They become like a Greek chorus, commenting to each other and to individual residents, but the attending physicians make the decisions and have their own reasons.”

A Dutch research project4 found the biggest reasons for delaying conversations about a patient’s death were “timing (when is the right moment?), reserve (because of the potential emotional despair of the patient), and hope (who am I to rob a patient of their hope?).”4

Nurses may develop a better sense than doctors for some of these answers because they are the ones implementing interventions, Dr Chapple added.

“They’re hanging the IVs, putting the machines on, monitoring the patient and doing all this stuff, so I think they have a sense of when there’s no resilience left,” Chapple told Medical Bag. “So the nurses are looking at the big picture, and the physicians are trying to tweak each complication.”

That tweaking mindset often begins from the first conversation, when a physician tells the patient about a terminal diagnosis but hardly before launching into the treatments they can offer.

“There’s a way of telling that doesn’t let you deal with the existential reality of it and instead moves you immediately into the steps you’re going to take,” Dr Chapple said. She noted that some research has shown that patients are surprised when they learn their treatments were never intended to be curative, even if they were told.

Physicians’ discomfort with discussing death may also arise from differences in patients’ ethnicity or faith. A 2015 study published in PLOS One surveyed more than 1000 physicians and found that 86% rated it “a great deal” or “quite a bit” challenging to discuss death with patients of a different ethnicity.5 In a 2016 study published in the American Journal of Hospice and Palliative Care, providers (albeit mostly nurses) rated conducting a spiritual history with patients as particularly difficult.6

A 2016 systematic review of the research lends credence to all of these reasons: “Recurrent themes within the literature related to a lack of education and training, difficulty in prognostication, cultural differences, and perceived reluctance of the patient or family,” the authors wrote.7

The problem, however, is more complex and far reaching than even those reasons, going deep into the heart of who we are as Americans, the way our healthcare system is set up, and how a big part of the economy’s growth relies on technology, Dr Chapple told Medical Bag.

“In the United States, it’s all tied up together with the idea that if we’re not living and growing and using technology to gain our salvation, there’s something wrong with us, that we have to fight, fight, fight, against death,” Dr Chapple said. “There is something about our culture and what we find acceptable and desirable that’s given us the terrible healthcare we have, that spends most of its money rescuing people from death and stabilizing them and spending so much less money on prevention and universal access to healthcare.”

While that perspective is expansive, reaching toward larger philosophical ideas regarding how our culture thinks about death, it also contains a key to learning to grapple with those conversations, Dr Chapple suggested.

How to Become Better at Talking About Death

“What palliative care people tell me is that the conversation is not difficult,” Dr Chapple said. “Part of what would be helpful is for a physician to think through for themselves what their own thoughts are about dying. What are your own fears, what is the unresolved grief you have about people you’ve lost in your life? Maybe that’s part of the internal work physicians have to do for themselves.”

Physicians who find that difficult may look for triggers they can rely on, such as initiating end-of-life care conversations when a patient reaches a certain age, or when a specific development occurs in a person’s progression of a chronic disease.

An extensive 2001 qualitative study identified 6 areas particularly important for physicians to consider in talking with dying patients8: “talking with patients in an honest and straightforward way, being willing to talk about dying, giving bad news in a sensitive way, listening to patients, encouraging questions from patients, and being sensitive to when patients are ready to talk about death,” the researchers wrote.

As with any skill, the secret to improving isn’t really a secret: practice, practice, practice.

“Practicing the conversation is the only way to get better at it and hone that skill,” Ms Bishop noted. “Some physicians have had access to training where they can role play with a mentor or with someone who has that skill set and get feedback on what they may want to do differently.”

Ms Bishop suggests starting these conversations by asking patients what’s important to them at this point in their life and how they feel things are going — and then listening.

“You get a lot of insight into what a person already knows about what their issues are or you may be surprised and find out what matters to them is not at all what you think it is as a clinician,” she added. “It just makes for holistic care when you have the conversations.”

But again, becoming more skilled with these conversations certainly doesn’t make them more pleasant.

“The goal of training is not to make it easy and fun,” Dr Curtis told Medical Bag. “Physicians by and large go into medicine to help people and make people feel better. To be in this position where you have to give bad news is difficult, but it is important, and being trained allows you to do it well and work with that discomfort.”

It’s also an ongoing conversation because people at different stages of life will change their opinions about what they want as circumstances or the disease itself change, she adds.

“We’re all going to die. For anyone who’s in the medical profession, there’s a certain subset of their patients who will die,” Ms Bishop said. “You can ease that burden if you start to have those conversations when someone is well and continue those conversations as the disease progresses.”

For physicians who are interested in brushing up on their communication skills in the face of bad news, there are a number of available resources, including VITALtalk and the Association for Death Education and Counseling. A list of organizations who provide assistance and information on multiple topics related to trauma, grief, dying, and death can be found here.

Complete Article ↪HERE↩!

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Gone but never forgotten:

How to comfort a child whose sibling has died

Children not only lose their sibling, their parents can also disappear into profound grief.

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In 1971, when I was four years old, my brother died of a congenital heart condition. Writing about this experience has prompted more responses than anything else I’ve ever written or spoken about. Untold and unheard stories appear in comments sections, strangers tell me cross-culturally consistent tales in the soft corners of conference rooms and speak about the siblings they’ve lost and how present the memories of them still are in their minds and hearts.

These stories all have one thing in common: a sense of being forgotten, left out of conversations about the dead, of rituals of mourning, and excluded from the respectful circle that is drawn around the bereaved.

One of the reasons stories of sibling loss spark so much interest is that the research literature in the area is so sparse. We still know so little about what children who’ve lived through this kind of death need as they mourn.

While the quantitative literature has explored the profound negative lifelong physical and psychological health impacts of this kind of bereavement, so many social and familial factors contribute to these impairments that it’s hard to imagine how the figures would look if families and communities were better equipped to respond to grieving children.

Children don’t forget about their lost siblings.

Part of the picture of sibling loss is that it is compounded. Children not only lose their sibling, but also the parents they knew disappear at least for a time into profound grief. This can lead to the loss of the child’s position as they try to cope with the higher expectations on their shoulders.

Adding to this complexity, the small body of qualitative research into children’s experience of losing a sibling highlights a raft of social failures. Silence about the mechanics of death, family isolation and the persistent myth across many cultures that children bounce back from grief more easily than adults are some of the most salient.

In this literature, grieving children tell us about what they wanted and didn’t get, and reading it provides some guidance on how to support bereaved siblings for anyone willing to listen. The following short list of suggestions is drawn directly from this qualitative literature.

Make genuine room for children in discussions

The evidence is very strong that grieving children of all ages need to be involved at every level in discussions about death and in the planning and performing of death rituals.

But, if we’re going to make room for them, we have to get across our own death material and be prepared to answer painful, graphic and profound existential questions about death and dying, such as:

Can you show me what a decomposing body looks like? Why are we going to burn my sister in her coffin? When will you die? And how? When will I die? Why do some people die while others keep on living? Why my brother and not someone else?

To tell the truths about death to children and to really include them in family and community meaning-making is to expose our culture’s myths of death and dying, whatever they are, to profound criticism and scrutiny. That is what we are being asked to do.

Accept that children’s grief is no different to ours

Sibling bereavement researcher Betty Davies’s participants spoke to her again and again about their need for the lifelong persistence of their grief to be understood.

You never stop grieving the loss of a sibling.

They spoke of wanting the adults in their lives to accept that their grief is no different to ours, that they are never too young to feel loss and that just because they are children doesn’t make them any more resilient than grown-ups.

They are asking us to challenge the almost universal myth that children forget, and instead to stand with them in their bereavement rather than setting them apart to take solace in their imagined innocence.

Honour continuing bonds with the dead

Our siblings play a significant role in our development, and this helps to explain some of the reasons why we are so deeply impacted when a sibling dies.

We develop our self in relationship to others, and our siblings are a kind of mirror. When they die, we lose a relationship that provided an essential reflection of who we are and who we might become. Children whose sibling has died need to have a place for their ongoing thoughts, feelings and connection to the dead throughout their lives.

For children who never knew their dead sibling, this affirmation of their connection to the lost one has a different quality but is no less important. While for these children the links are not made up of memories of a relationship, they are important symbolic representations of the self through the lens of the grief that came before.

For both groups of children, those who knew their dead sibling and those who did not, stories about the lost child help to make sense of who they are and of their place in the world.

We can all play a part in making space for children whose sibling has died to bear the unbearable – by offering solace in the form of genuine inclusion and by breaking the silence that can turn pain into suffering.

Complete Article ↪HERE↩!

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Being Mortal

FRONTLINE follows renowned New Yorker writer and Boston surgeon Atul Gawande as he explores the relationships doctors have with patients who are nearing the end of life. The film investigates the practice of caring for the dying, and shows how doctors are often remarkably untrained, ill-suited and uncomfortable talking about chronic illness and death with their patients.

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Living Apart Together: A New Option for Older Adults

By Judith Graham

Three years ago, William Mamel climbed a ladder in Margaret Sheroff’s apartment and fixed a malfunctioning ceiling fan. “I love that you did this,” Sheroff exclaimed as he clambered back down.

Spontaneously, Mamel drew Sheroff to him and gave her a kiss.

“I kind of surprised her. But she was open to it,” he remembered.

Since then, Mamel, 87, and Sheroff, 74, have become a deeply committed couple. “Most nights, I’ll have dinner with Marg and many nights I stay with her overnight,” Mamel explained.

And yet, despite the romance, these North Carolina seniors live in separate houses and don’t plan to move in together or marry. Demographers call this type of relationship “living apart together” (LAT).

“It’s a new, emerging form of family, especially among older adults, that’s on the rise,” said Laura Funk, an associate professor of sociology at the University of Manitoba in Canada who’s written about living apart together.

Questions abound about these unconventional couplings. What effects will they have on older adults’ health and well-being? Will children from previous marriages accept them? What will happen if one partner becomes seriously ill and needs caregiving?

Researchers are beginning to focus on these concerns, said Susan Brown, chair of the sociology department and co-director of the National Center for Family and Marriage Research at Bowling Green State University in Ohio. “It’s really remarkable that older adults are in the vanguard of family change,” she said.

How many older adults are in LAT relationships? According to a 2005 survey by the National Social Life, Health, and Aging Project, 7 percent of individuals between 57 and 85 years old described themselves as living apart together. (Some experts contend the measure used in this survey was too broad, allowing couples who are dating to be included.)

Last month, at the annual meeting of the Population Association of America in Denver, Huijing Wu, a graduate student in sociology at Bowling Green State University, presented an analysis of nearly 7,700 Wisconsin adults age 50 and older surveyed in 2011. Married couples accounted for 71.5 percent of that group, single people accounted for 20.5 percent, and people who were “partnered but unmarried” accounted for 8 percent.

Of the partnered group, 39 percent were in LAT relationships, according to a more focused definition of this arrangement, compared with 31 percent who were dating (a less committed, shorter-term relationship) and 30 percent who were cohabiting.

Jacquelyn Benson, an assistant professor of human development and family science at the University of Missouri, is among a handful of researchers who’ve asked older adults about their experiences in LAT relationships. “Older adults really see this as a lifestyle choice, not a relationship of convenience,” she said.

Benson’s 2016 study of 25 older adults (from 60 to 88 years old) in LAT relationships found various motivations for these partnerships. Seniors wanted to have “intimate companionship” while maintaining their own homes, social circles, customary activities and finances, she discovered. Those who’d been divorced or in unhappy earlier marriages didn’t want to tie themselves down again and believed a degree of distance was preferable to day-to-day togetherness.

Also, several women who’d cared previously for sick parents or husbands wanted to avoid assuming caregiving responsibilities or the burden of running a household again.

“It’s a been-there-done-that attitude,” Brown explained. “I took care of my husband, I reared my children, and now it’s my time.”

Caregiving is a thorny issue, on multiple fronts. The only known study to look at caregiving in LAT relationships, out of the Netherlands, found that about half of partners planned to provide care, if needed — a sign of ambivalence. But when illness entered the picture, partners offered assistance nonetheless.

“People in LAT relationships forget there’s going to be this emotional entanglement and they won’t just be able to walk away,” Benson said.

Other complications can arise if adult children resent or fail to recognize their older parent’s outside-of-marriage relationship. “In some cases, when a partner wants to step in and have a say, they’ve been pushed out by family members,” Benson noted.

One older woman in her study learned that her partner had been placed in a nursing home by his family only when she couldn’t reach him at home anymore. “They didn’t include her in the conversation at all,” Benson said, “and she was pretty upset about it.”

Only a few studies have evaluated the quality of LAT relationships, which has implications for seniors’ well-being. One found that older adults in these relationships tend to be less happy and receive less support from partners than people who are married. Another, presented at last year’s Population Association of America meeting, found that the quality of LAT relationships isn’t as strong as it is for marriages.

That hasn’t been true for Luci Dannar, 90, who’s been involved with James Pastoret, 94, for almost seven years, after meeting him at a dance at a Columbia, Mo., senior center.

“The first feeling I had for Jim was sorrow because he seemed to be grieving from his wife’s death five months before,” said Dannar, whose husband and oldest daughter both passed away 19 years ago. “I thought maybe I could be helpful to this man because I’d been through those deaths.”

After getting to know Pastoret and realizing she liked him, Dannar laid down her terms. “I told him, I don’t ever want to get married and he said ‘I don’t either,’” she remembered. “And I said if you have a jealous bone in your body, don’t darken my door again. Because I lived 53 years with a jealous husband, and I never want to go through that again.”

Neither wanted to give up their apartments in a retirement community, about 300 steps from each other. “I like my independence,” said Pastoret, who taught in the school of natural resources at the University of Missouri for 33 years. “When I go home at night after supper with Lucy, I’m very happy to be by myself.”

“He comes over at 5 every evening and leaves here about 9, and then I have two hours by myself — my private time,” Dannar said. “We really like our space, our time alone, and we don’t need to be together 24 hours a day.”

Unlike other older LAT couples, they’ve talked about the future and toured assisted living centers together. “Someday, if he needs me to help him or I need him to help me, we will probably rent an apartment together, with our own bedrooms, and hire extra help,” Dannar said. “Our plan is to take care of each other until one of us is gone or we go into a nursing home.”

William Mamel is already making good on a similar promise to Margaret Sheroff, who had a mass removed from her gall bladder late last year and recently was hospitalized with complications from chemotherapy.

“With her in the hospital, I spend most of my days there,” said Mamel, who was a good friend of Sheroff’s with his wife of 37 years, Betty Ann, who passed away 2½ years ago. “Being caregivers for each other isn’t even a question.”

Their situation is complicated by Sheroff’s guardianship for her husband, John, who has advanced dementia and resides in a nursing home. “Marriage isn’t in the picture for us, but that doesn’t matter,” Sheroff said. “We’re taking one day at a time and enjoying being together.”

“Just to be able to have someone that you can wake up with in the morning and talk to, someone to have coffee with and see the smile on their face, is such a blessing,” she continued. “At this time of life, it’s really, really important to have someone in your life who’s there for you.”

Complete Article ↪HERE↩!

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Creating Rituals To Honor The Dead At Long-Term Care Facilities

Death and its companion, grief, are often ignored at nursing homes and assisted living centers. Yet ignoring the loss can lead to depression, staff burnout and other problems.

Staff members at Gray Health & Rehabilitation participate in the annual bereavement ceremony.

By Judith Graham

One by one, their names were recited as family members clutched one another’s hands and silently wept.

Seventeen men and women had died within the past year at Gray Health & Rehabilitation, a 58-bed nursing home. Today, their lives were being honored and the losses experienced by those who cared for them recognized.

Death and its companion, grief, have a profound presence in long-term care facilities. Residents may wake up one morning to find someone they saw every day in the dining room gone. Nursing aides may arrive at work to find an empty bed, occupied the day before by someone they’d helped for months.

But the tides of emotion that ripple through these institutions are rarely openly acknowledged.

“Long-term care administrators view death as something that might upset residents,” said Dr. Toni Miles, a professor of epidemiology and biostatistics at the University of Georgia. “So, when someone passes away, doors are closed and the body is wheeled discretely out the back on a gurney. It’s like that person never existed.”

At Gray Health’s memorial service on this warm, sunny day, a candle was lit for each person who had died. Their images — young and vibrant, then old and shrunken — flashed by in a video presentation. “Our loved ones continue to live on in the memories in your hearts,” Rev. Steve Johnson, pastor of Bradley Baptist Church, said from a podium.

Dozens of family members gathered outside, each holding a white balloon. At the count of three came the release. Cries of “I love you” echoed as the group turned their faces to the sky.

Sylvia McCoullough wraps her arm around daughter Kim Kohlmayer as they mourn Sylvia’s father, Melvin Henry “Bo” Daniels, at an annual bereavement ceremony at the Gray Health & Rehabilitation in Gray, Ga., on May 14, 2018.

Miles wants to see bereavement openly acknowledged at facilities throughout Georgia to end what she calls “the silence surrounding loss and death in long-term care.” Following in-depth discussions with more than 70 staffers, residents and family members at nine facilities in central Georgia, she has created two handbooks on “best practices in bereavement care” and is gearing up to offer educational seminars and staff training in dozens of nursing homes and assisted living residences across the state.

“Dr. Miles’ work is incredibly important” and has the potential to ease end-of-life suffering, said Amanda Lou Newton, social services team leader at Hospice of Northeast Georgia Medical Center.

Fraught reactions to loss and death are common among nursing assistants and other staff in long-term-care facilities, research shows. When feelings aren’t acknowledged, grief can go underground and lead to a host of physical and psychological symptoms, including depression, distancing and burnout.

Those mourning former nursing home residents pray together near the end of an annual bereavement ceremony at Gray Health & Rehabilitation in Gray, Ga., on May 14, 2018.

Joanne Braswell, director of social services at Gray Health, remembers a resident with intellectual disabilities who would stay in Braswell’s office much of the day, quietly looking at magazines. Over time, the two women became close and Braswell would buy the resident little gifts and snacks.

“One day, I came in to work and they told me she had died. And I wanted to cry, but I couldn’t,” Braswell recalled, reflecting on her shock, made more painful by memories of her daughter’s untimely death several years earlier. “I promised myself never again to [become] attached to anyone like that.” Since then, when residents are actively dying, “I find myself pulling away,” she said.

Sylvia McCoullough, 56, came to Gray Health’s memorial ceremony for her father, Melvin Daniels, who died on April 19 at age 84.

A balloon release concludes the annual bereavement ceremony at Gray Health and Rehabilitation in Gray, Ga.

Two years earlier, not long before her mother passed away, McCoullough had realized that her father had dementia. “He was the strong one in our family. … He always took care of us,” she said, explaining that her father’s confusion and hallucinations shook her to her foundation.

“I cry all the time,” McCoullough continued, looking distressed. “It’s like I’m lost without my mom and dad.” But Gray’s ceremony, she said, brought some comfort.

Edna Williams, 75, was among dozens of residents at the event, sitting quietly in her wheelchair.

“I love to recall all the people that have passed away through the year,” said Williams, who sends sympathy cards to family members every time she learns of a fellow resident’s death. On these occasions, Williams said, she’s deeply affected. “I go to my room” and “shed my own private tears” and feel “sadness for what the family has yet to go through,” she said.

Cathy Bass (left) and granddaughter Heaven Melton attended the bereavement ceremony at Gray Health & Rehabilitation in remembrance of Bass’ brother, Timothy Marion Sanders. “I miss him every day,” she says.

Chap Nelson, Gray Health’s administrator, has instituted several policies that Miles’ bereavement guide recommends as best practices. All staff members are taught what to do when a resident dies. When possible, they’re encouraged to attend the off-site funerals. Every death is acknowledged inside the building, rather than hidden away.

If one of his staff members seems distressed, “I go out and find them and talk to them and ask how I can help them with the feelings they may be having,” Nelson said.

Other best practices include offering support to grieving residents and relatives of the deceased, recognizing residents’ bereavement needs in care plans, and having a protocol to prepare bodies for final viewing.

Some facilities go further and create unique rituals. In one Georgia nursing home, staff members’ hands are rubbed with essential oils after a resident’s death, Miles said. In Ontario, Canada, St. Joseph’s Health Centre Guelph holds a “blessing ritual” in the rooms where people pass away.

Fifteen miles away from Gray, in Macon, Ga., Tom Rockenbach runs Carlyle Place, an upscale facility with four levels of care: independent living, assisted living, memory care and skilled nursing services. Altogether, about 325 seniors live there. Last year, 40 died.

“We don’t talk about it enough when someone passes here; we don’t have a formal way of expressing grief as a community,” Rockenbach said, discussing what he learned after Miles organized listening sessions for staff and residents. “There are things I think we could do better.”

When a death occurs at this continuing care retirement community, an electric candle is lit in the parlor, where people go to pick up their mail. If there’s an obituary, it’s placed in a meditation room, often with a sign-in book in which people can write comments.

Since working with Miles, Rockenbach has a keener appreciation for the impact of death and loss. He’s now considering starting a support group for staff and hosting a death cafe for residents where “people could come and hear what other people have gone through and how they got through it.”

Tom Rockenbach (center) is executive director of the Carlyle Place senior living facility in Macon, Ga. Rockenbach is considering starting a support group for staff and hosting a death cafe for residents where “people could come and hear what other people have gone through and how they got through it.”

Tameka Jackson, a licensed practical nurse who has worked at Carlyle Place for eight years, became distraught after the death of one resident, in his 90s, with whom she had grown close.

“Me and him, we were two peas in a pod,” she said, recalling the man’s warmth and sense of humor.

Over time, the old man confided in the nurse that he was tired of living but holding on because he didn’t want family members to suffer. “He would tell me all kinds of things he didn’t want his family to worry about,” Jackson said. “In a way, I became his friend, his nurse and his confidante, all in one.”

One morning, she found his room was bare: He’d died the night before, but no one had thought to call her. Jackson’s eyes filled with tears as she recalled her hurt. “I’m a praying person, and I had to ask God to see me through it,” she said. “I found comfort in knowing he knew I genuinely loved him.”

Jan Peak, 81, was dealing with grief of a different sort in mid-May: Her husband, David Reed, who had rapidly advancing Parkinson’s disease, had recently moved to Carlyle Place’s assisted living section from their independent-living apartment— signaling the end of their time living together.

Like other people at Carlyle Place, Peak had a lot of adjusting to do when she moved into the facility five years ago after her first husband had died. “Lots of people here have come here from somewhere else and given up their homes, their friends and their communities, often after the death of a spouse,” Peak said. “Once you’re here, loss — either your own or someone else’s — is around you continually.”

She found herself turning to David, whose first wife had died of a brain tumor and whom she describes as a “soft, sweet, wise man.” Before they married, they talked openly about what lay ahead, and Peak promised she would carry on.

“No one can stop the heartache that accompanies loss,” but “my friends and family still need me,” she said.

In late May, David sustained a severe head injury after falling and died. “I miss him greatly as we were very happy together,” Peak wrote in an email. “I am doing as well as I can.”

Complete Article ↪HERE↩!

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What is a Death Doula?

by

Do you know what a death doula is?

If you would have asked me or many of the women I work and study with that question a few years ago, most of us would have been stumped. However, since then, we’ve all taken the plunge into this previously obscure line of death work.

I heard my death doula call in 2017, soon after I decided to leave mortuary school. Thankfully, before I quit the program’s classwork, I had the opportunity to interview a local death midwife about her work. Her desire to educate the public about death and death planning inspired me to look into the field.

After a year or so of research, I was gifted entrance into Quality of Life Care’s online death doula mentoring certificate program from my parents. Since starting the program, I created Gather the Leaves LLC, an end-of-life care business that serves pets and people.

I also had the opportunity to interview two women who practice in the alternative end-of-life field. Read on to discover what we do.

Hearing the call

Deanna Cochran

Registered nurse, end-of-life doula, mentor and educator, and founder of Quality of Life Care, LLC

When Deanna Cochran’s mom was diagnosed with gastrointestinal cancer, she was distraught for two reasons: Cochran was upset because her mother was very ill; and as a hospice nurse, Cochran had insider knowledge about the disease.

Cochran knew that the people who came into her care over the years experienced a lot of suffering before receiving hospice care. “This fear was in me with my mom,” Cochran says.

“I thought, ‘holy cow… I know what people deal with before they get to hospice; [and] my mom doesn’t want to be on hospice.’”

Cochran knew her mother was going to die, that her mother did not want to die, but that death was inevitable. So, Cochran implemented a unique care program.

Cochran did everything she could to keep her mother out of the hospital. Cochran helped implement a palliative care program (specialized medical care for people with a serious illness) for her mother. “There was no medical system set up for [palliative care] where she was, but we did it on [our own] with friends, family, and my mom’s physician,” Cochran explains.

Cochran’s mom ended up dying within five weeks of receiving her diagnosis. When she died, Cochran realized that she and the team she helped form had “midwifed” her mother the way birth midwives help expectant and new mothers.

In the past, Cochran had received exquisite care from birth midwives during the birth of her second child. The midwives, with the help of a good doctor, helped Cochran heal from the trauma she experienced during her first child’s birth.
“When my mom died, all of that flooded back because it was so traumatic,” Cochran says.

“[And] I [saw] first hand how traumatic advanced illness and dying is for people in the medical system. [So, I thought I could] be like these birth midwives, and provide healing from some of that trauma.”

Cara Schuster

End-of-life guide and massage therapist, Fox Den Folk Care

Cara Schuster didn’t know anything about death doulas, death midwifery, or green burial until a few years ago. “I was going through a personal journey and doing some shamanic work [and] my practitioner had told me to do a week-long journey,” Schuster says.

“During that journey, I came across death midwifery.”

Prior to learning about alternative death work, Schuster didn’t have a lot of personal experience with death besides losing grandparents, pets, and friends. “I don’t think I experienced anything more than your average person at the age of 40,” she says. “I did lose my father when I was a baby, so, I did have a very interesting concept of death from a young age.”

What death doulas do

Death doulas provide a wide range of services; all are non-medical. Some doulas only “sit vigil,” meaning they provide emotional support and a caring presence for the dying and the dying’s family. Other doulas enter a client’s home well before hospice is involved and provide practical help in the home. And some doulas are well-versed in helping people plan for their death; they prepare advance directives, wills, and more.

Since I only recently completed my coursework and started volunteering for hospice, I tend to provide practical services. However, as I gain more experience and sit bedside at more vigils, I will expand my services accordingly.

Currently, Schuster, who is a certified death midwife and doula, considers herself an end-of-life guide because she is not helping people transition. “It hasn’t been my experience thus far,” she says. However, Schuster knows her work is ever-evolving.

So far, Schuster has assisted two families with home funerals. Both of those families had different needs she helped met. “I was with one of the families for a week off and on and was present through the transition of the passing—I had known that person for 20 years,” she adds.

Cochran has practiced as a death doula since 2005, but has worked as a registered nurse in end-of-life care within and outside of hospice since 2000. She currently trains end-of-life doulas online and in-person at various workshops and conferences throughout the United States.

Cochran’s service list, along with her teachings through her School of Accompanying the Dying, are ever-evolving, too.

Why this work is inspiring

Many people tend to wonder how death care industry workers “do it,” and I get it.

Death, loss, and grief are incredibly tough things to deal with. However, most any death doula or end-of-life caregiver will tell you that their work has many redeeming qualities.

“The elation I have felt from helping these two families—there’s nothing that can compare to any of the work I’ve done,” Schuster says.

“It was incredibly fulfilling.”

Cochran adds that she continues to do this tough work after 18 years of service because it’s her gift to give to the dying. “I’ve tried to not be a hospice nurse and death doula more than once because maybe I had seen too many people die within a couple of days…” But she says that feeling never lasts.

“What I’ve realized in all this is that I have to care for me, because that thing inside of me that wants to help you doesn’t go away,” Cochran explains.

“I have so much to give. It’s a gift from God—I have nothing to do with it.”

And although I’ve yet to serve an actual client through the dying process, my studies and volunteer work through hospice compel me to agree with Schuster and Cochran’s sentiments.

This work isn’t easy—human emotions and death are often messy. But the support death doulas, midwives, and guides provide families can truly help many people find some peace and closure during an indescribably hard time. And that’s beautiful in its own way.

Complete Article ↪HERE↩!

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Disenfranchised grief

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Sometimes, we make assumptions about another person’s grief. We may assume, for instance, that when a spouse or partner dies, the person left behind feels a deep sadness and longing. Or we may judge someone for lingering in their grief instead of moving on. Other times, we may not even acknowledge a death, perhaps because it was caused by suicide or a drug overdose. We might also minimize, ignore, or simply not recognize someone’s grief.

These various reactions and assumptions are examples of what Carol Schoneberg refers to as disenfranchised grief. As an end-of-life educator and bereavement services manager at Hospice of Southern Maine, Carol has had more than her fair share of conversations with people about how they are grieving (or not).

“Establishing definitions of proper and improper mourning techniques is a way of excluding certain individuals, thereby disenfranchising them and their grief,” she explained. “Disenfranchised grief presents some complications that are not always present in other grieving processes. When disenfranchised grief is not legitimized by others, the bereaved person may be denied access to rituals, ceremonies, or the right to express their thoughts and emotions.”

An anonymous story

One of Carol’s clients did not feel a deep longing when her husband died a little over a year ago but did experience plenty of other emotions. She agreed to share her story because she hopes it will help other people confront their own feelings. However, she prefers to remain anonymous.

We remained together although as years passed he participated less and we lived parallel lives. I know there are other people who may not have had that same experience, but there are always bits and pieces of living with someone that are not all wonderful. When you’ve been married 50+ years, people tend to believe you are devastated, but there were times when I had wished he’d just go away and there’s shame in that.

Carol has found that most people would be too ashamed to admit such feelings, which is why seeing a bereavement counselor can be so helpful.

Most people are ashamed or embarrassed to say, hey, wait a minute, I don’t want anybody here to think that I’m broken-hearted about what happened. I’m sad, it is definitely causing a difficult experience, but don’t make assumptions about what I’m feeling. Those people may need permission to acknowledge their feelings and this blog post may help to do that. They may see themselves and it might give them the courage to feel what they do and not have shame.

Her client’s husband was in Gosnell (Memorial Hospice House) for three days before he died. Afterward, things were so overwhelming, she almost felt like a non-participant.

During this time I was present but paralyzed and exhausted. It was beyond me. And then slowly, through talking to folks from hospice, I began to see that it was ok and that I could sit and listen and reflect on what I was feeling.

She also took the time to reflect on an incident that occurred when her husband was hospitalized for surgery and made the decision to speak up to hospital officials. After his surgery, he was sent home against her protests that it was too soon and he was much too ill. She was right and soon after, her husband was admitted to Gosnell. The incident bothered her so much that with some help from her primary care doctor, she met with a group of hospital officials.

I couldn’t let it slide, it was so important. Sitting there, I learned that it was circumstances, it wasn’t any one person’s fault and now I understand why it happened.

The fact that she spoke up and followed through helped her client move on, explained Carol.

If you’re left with feelings that something did not happen the way it should have in the care of your person, that can easily become the focus. Often there’s anger and that can become a diversion from letting the grief start to settle or people want to place blame. It’s easier than the grief. Some people never get past that and never go through their grieving process, whatever it is. My client spoke up and she was heard.

Carol’s client took a bold step but she takes exception to the word grief, at least as it pertains to her.

I’m not happy with the word grief because it brings with it an assumption, but I don’t have another one. I think of it as a journey. The biggest thing for me is the change. It’s not always tears, it’s not always unhappiness, it’s a mixed bag. At this time, it’s freedom that I feel and the responsibility that goes with that. What do I do with this freedom, these possibilities, these opportunities? I’m still finding my way.

Different experiences

From Carol’s perspective, everything and anything a person feels after the death of someone who was significant in his or her life is normal.

What I hope that people will come away with after reading this is the realization that there are many kinds of losses and many kinds of grief. Not everybody’s experience is the same, so don’t make assumptions. It’s human to go there, but the minute you start finding yourself making an assumption about someone or judging them, just remind yourself that you don’t know.

Sadness isn’t always about grief

Carol herself has experienced disenfranchised grief related to the death of her father.

I think I saw him four times in my life and when he died, I can’t say I had an ounce of sadness. I felt flat. But the sadness came in when I revisited the sadness I had spent my whole life in front of — the sadness of not having a father. I held the fantasy for 44 years that we would have this deathbed reconciliation and we didn’t.

When there’s a relationship that was either verbally or emotionally abusive or the person was absent in your life, there’s no deep connection, only years of hurt or dissatisfaction, you may grieve what never was. Those things don’t leave, they’re part of who we are. Some people wrestle with anger over it. I don’t, just sadness.

Guilt

Another emotion that some people wrestle with when a loved one dies is guilt. They feel guilty because they didn’t deal with something when the person was still alive or believe that something they did or didn’t do somehow contributed to the person’s death.

“The classic example,” said Carol, “is if my loved one took his or her life and what did I miss? This wouldn’t have happened if I just fill in the blank and that feeling of I am responsible for what happened. They may feel judged, which makes their grief even more complicated. When there is this extra layer, it needs to be worked on before you can move freely to the next phase of the grief journey.”

A death that might go unrecognized

And what about grief that may go unnoticed or downplayed in some way? There are a number of reasons why that might happen — one of them is if you lose a pet. Fortunately, Beth Van Gorden has had the opposite experience. She lost her dog, Bonnie, about a month ago and people have been kind and thoughtful, especially the kids in her neighborhood who told her they were sad to see her without Bonnie.

“I had her for 11 of her 15 years,” Beth told me. “She was with me 24/7 and gave me unconditional love. I live alone so she was my companion and also a vehicle for me to get out of my house four times a day, interacting with my neighbors and keeping abreast of what was going on in my neighborhood.”

The loss of a friend

Beth also knows what it’s like to lose a human friend. Eileen Rubin, who was one of her closest friends, died of cancer in 2015. Beth made regular trips to North Carolina to help Eileen and her family when she was ill and was with her when she died.

“I just knew that she didn’t have much time left,” she said. “It was intuition. I was in Maine and I decided to go down. And she waited. She waited for me. It was an incredible honor to be with her. Her son was holding her and she took her last breath. I think she needed me to be there. I think it was part of our deal in this life that I was going to be there.”

Beth keeps in touch with Eileen’s family and found solace and support in her friends.

“We’ve all gotten to ages where we friends who have died,” she explained. “Some of us have the same friends who have died and so, we get to share that. I felt very fortunate that I had a group of people who could be supportive. I think that’s crucial. I think that for all of us, grief is different and nobody processes it in exactly the same way and it all needs to be respected.”

How to support someone who is grieving

Beth was fortunate to get the support she needed when Eileen died and is getting now with the death of her dog Bonnie. Carol Schoneberg’s client benefitted from what she called the “gift of a support system” that extended beyond family and friends. She highly recommends outside support, such as hospice and some sort of spiritual support — a priest, a rabbi, a minister. Someone who has your perspective and your back.

We don’t always know what to say or how to act when we’re in the presence of someone who is mourning. Sometimes our foot goes right into our mouth and other times our feet take us off in the opposite direction and we don’t say one word at all. Not even “I’m sorry for your loss”.

Everyone I interviewed for this series passed along some advice about things people said or did that helped and things that didn’t. I’ll share their wisdom in the final segment of Living With Grief.

Complete Article ↪HERE↩!