As a doctor, I’m trying to have more empathy for my patients — and myself

By Joseph Stern

“Well, then. I’m going to die, aren’t I?” my friend asked me from a bed in the emergency room. I faced him and his wife. I had worked with Alan Davidson for 20 years. A recently retired ER attending physician, he came in with new right-sided numbness one Saturday evening.

Initially, the ER team called a “code stroke,” rushing to take advantage of the precious minutes available to administer clot-busting drugs or open blocked arteries before the patient suffers more brain damage. A CT scan suggested not a stroke but a brain tumor. I was consulted when an MRI suggested a glioblastoma. We both knew his prognosis was likely poor.

Three days later, I took him to surgery, aware that he was trusting me with his life. When he awoke, Alan and I were pleased that his numbness was no worse and he had no weakness. The postoperative scan showed we had removed virtually the entire tumor.

When the pathology came back, I met with Alan, his wife, and his son. I sat on the edge of his bed and told him his diagnosis. Pathology suggested glioblastoma, a malignant brain tumor with a terrible life expectancy. Neither of us was surprised: We both knew this was coming. But he choked up as he expressed gratitude for the care he was receiving.

Holding back my own tears, I told him how honored I felt he trusted me enough to care for him. Previously, I would not have allowed myself to acknowledge my own gratitude to Alan or accept the depths of his gratitude to me: I would have pushed these feelings away.

More than 25 years earlier, I had faced a similar situation with different results. As a resident, I helped my supervising doctor remove a tumor from deep within the temporal lobe of a man in his 30s. The surgery went well, but we knew the patient’s prognosis was dismal. I entered the cramped consultation room and encountered, for the first time, his wife and three small children. They nervously awaited our report.

I couldn’t bring myself to tell them this was an incurable tumor from which the patient would die in the near future. Instead, I parsed my words. They were technically correct, yet detached. Overwhelmed, I had no idea how to face the patient’s family. What they needed was honesty and compassion. Instead, I avoided connecting, leaving someone else to fill in the gaps. To this day, I carry a sense of shame and failure: I avoided pain, but fell short as a physician.

Physicians develop detachment and emotional distance as a coping mechanism against the pain of grief, loss and failure. Yet our attempts to protect ourselves through detachment ultimately intensify feelings of loss and deprive us of resolution. I have come to see that these unresolved feelings contribute directly to professional burnout.

Mary Buss, director of ambulatory palliative care at Beth Israel Deaconess Medical Center and associate professor of medicine at Harvard Medical School, says that physicians are afraid of, and avoid, feelings of sadness. We reason, mistakenly, that being open to pain and loss could damage us; we fear losing our composure and appearing vulnerable. Yet accepting vulnerability is what most closely connects us with our patients. This is what they remember in the end, after all. Patients crave acceptance, appreciation, and acknowledgment; we all want this for ourselves.

As the brother of a patient, I discovered how it felt to be on the receiving end of care lacking in compassion as I observed occasional blunt, insensitive or confusing comments from the medical staff. I became determined to connect more deeply with my patients and my own emotions. Yet I wondered: How could I balance connection and detachment as a neurosurgeon? Did connecting emotionally with my patients mean I could no longer detach enough to be an effective surgeon? Would it be better to become a technician and leave the emotions to others

I found my approach through a conversation with Helen Riess, a psychiatrist and author of “The Empathy Effect: Seven Neuroscience-Based Keys for Transforming the Way We Live, Love, Work, and Connect Across Differences,” who explained that through the process of developing self- and other empathy, emotional armor could be replaced by “emotional agility.” Intrigued, I went on to read Susan David’s “Emotional Agility: Get Unstuck, Embrace Change, and Thrive in Work and Life,” which characterizes this healthier stance.

Emotional agility enables us to move easily between powerful emotions, recognizing feelings without becoming bogged down by them; to move fluidly through life’s demands without becoming stuck or overwhelmed.

Emotionally agile people derive power from facing, not avoiding, difficult emotions. By allowing ourselves to be vulnerable, physicians become better able to connect more deeply with our patients and ourselves. I came to appreciate that it is possible to move between dispassionate technical precision and intense emotional connection without having to choose between them.

I sat with Alan and his family after his surgery, and we talked until I had to return to the operating room for another case. As I left, Alan remarked that I seemed to get energy and joy from my work. I was surprised to realize that I did feel energized, not depleted; privileged to witness both the beauty and fragility of life. At that moment, I knew I had discarded my suit of emotional armor. In its place was something better and more powerful: emotional agility.

Weeks later, Alan was readmitted to the hospital with increasing right-sided numbness. I read him a draft of this essay as he sat in his hospital bed, unable to control his computer or phone yet intellectually forceful and emotionally attuned. He said that he wanted me to tell his story. He felt strongly this message must be shared, agreeing that doctors often carry a burden of private grief and perceived failures.

We spoke of his children, his grandchildren, his wife. He told me of professional mistakes and a sense of failure that haunted him, yet he also spoke proudly of the thousands of patients he had cared for, their individual stories and faces no longer distinct but flowing through him.

Sitting at my friend’s bedside, I saw Alan forgive himself. He always tried to do his best.

Sometimes, he failed. Just as I often felt powerless, unable to pull someone from the wreckage I saw coming, yet I had done my best. As a resident years ago, knowing that a young husband would not live for long and that his children would lose their father, I had done all I could do — except to allow the enormity of this loss to wash over me, to share it with his family and to accept it, as Alan was doing in his own life

Alan reinforced for me that it is possible to be a skilled surgeon and also a caring and emotionally connected doctor; to hold someone’s hand, and to be present. I couldn’t repair my failed conversation with that family, but I can learn from my mistakes. As long as I continue to practice, there will be another opportunity to try to get things right.

And, as Alan told me, these lessons hold for our lives beyond practice. Part of emotional agility is self-compassion, often a sticking point for physicians. We tend to be unforgiving of ourselves (and of our colleagues). Just as we need to recognize and admit our failings, we also need to let them go. We must forgive ourselves and each other.

These are essential steps toward accepting our vulnerability and achieving emotional agility. Only then can we abandon our detached and defended selves and make the connections that sustain and enrich us.

Alan Davidson, born Jan. 6, 1942, died June 26, 2020. Joseph Stern is a neurosurgeon in Greensboro, N.C. He is the author of “Grief Connects Us: A Neurosurgeon’s Lessons on Love, Loss, and Compassion,” published in May by Central Recovery Press. His website is

Complete Article HERE!

On Living and Dying

— Advice From a Doctor Who Deals With Terminally Ill Patients

By Pamela Prince Pyle

The COVID-19 pandemic may finally be slowing, but the pandemic has shone a stark light on one human problem that we’ll never escape. One day books analyzing the pandemic will fill whole rows in libraries, but no analysis can dim the glaring human condition that we must face—the fact that we’re all going to die. A patient dying from ALS said it best, “No one makes it out alive.”

Many of us have thought more about death this past year than ever before as few of us have been unscathed by the death of an acquaintance, a loved one, or friends’ loved ones. Psychologist Ronnie Janoff-Bulman explains, “Once you know that catastrophe dwells next door and can strike anyone at any time, you interpret reality differently.” As we reinterpret the reality of today in light of our future imminent death, let us take a hard look at just exactly how we’re going to let loose of this earth.

As a doctor who deals with terminally ill patients, I know four things are true:

1. Most of us assume we are going to live to a ripe old age. However, no one is guaranteed tomorrow. There is no time like the present for making preparations regardless of age or health status. It can provide a surprising comfort to think through and write out your final wishes. Many online assists are available to guide you through the process. We plan for many life events with intensity such as births, marriages, anniversaries, and birthdays. It is valuable to plan for this crucial time of life, and it is still life. In truth, I have seen so many living their best life once given a terminal diagnosis.

2. Those who wait until they get a grim prognosis to start pondering these matters often find the process more difficult. It is challenging to have end-of-life discussions in times of crisis when everyone’s emotions are more volatile. I have been witness to so many families under stress becoming divided when opinions differ on what should be done as decision trees are presented by the medical team. In critical situations, families can focus more fully on the care and love of the patient rather than wondering what the patient would want.

3. Conversations about death and dying make most people uncomfortable, fearful or sad, even though the conversation itself does not increase our chances of dying. But, thinking through end-of-life issues within our control is not morbid—it is wise. Take two real-life examples.

The first was my friend Lani. When she learned that she had less than two years to live, she fought hard, mostly for her family. I was amazed to learn that two years earlier she had cleaned out her closets and attic. “Get rid of that stuff,” she told me personally, “your kids won’t want it.” She had prepared, so she was able to spend her last months enjoying life and enjoying her family. I remember her bedroom in her home as being a beautiful place of quiet and peace. That’s where she passed away, surrounded by her big family.

The other example is a man named Ralph. He was far from an ideal father or husband. A robust man, he didn’t seem anywhere near death, but a massive stroke brought him to the brink. Ironically, this father who had never done much for his family had prepared for his death by completing an online $5 directive known as “Five Wishes.” In his final months, as his children ministered to his needs according to his written directives, they got to know a dad who was vulnerable, and in his vulnerability, he became lovable. The last gift he gave his children—his planning—was the best gift he ever gave his children. And the last months of his life were the best months of his life.

People ask me how to talk about death with younger children. A recent article in Parents Magazine emphasized the importance of talking with our children about death, even when they are young, to avoid confusing and often terrifying feelings. I still remember how terrified I was as a child when I watched the animated film “Bambi” and—spoiler alert—the death of Bambi’s mother. My grandson was terrified in “The Lion King” when—spoiler alert—death claimed Mufasa.

The reality is that most kids’ movies feature dying or death as a prominent theme. We need to talk openly with our children about those sad and scary scenes, listening more than we talk.

4. Most faith traditions offer spiritual (and even non-spiritual) guidance to their adherents who are dying and to those who love them. The Jewish faith, for example, has rituals that take into account the theological, practical, and emotional needs of the terminal patient. The rightness or wrongness of our beliefs will become evident after death, but the preparation that precedes that last breath is valuable and integral to the dying process. Those who do not prepare seem to suffer more, and families that are left to deal with an unexpected, sudden death seem to suffer the most.

Once we are comfortable with the concept of our own death and make a plan for how we’re going to die, we can join with those who make light of this inescapable human condition. We can laugh with Jerry Seinfeld who says, “Make no mistake about why these babies are here—they are here to replace us.” And we will leave earth with the confidence that we’re not burdening those babies, but actually blessing our families.

Complete Article HERE!

Study highlights challenges providing end-of-life dementia care

by Sandy Cheu

Providing end-of-life dementia care is rewarding but full of challenges including having to help family members accept that their loved one is dying, a study of aged care managers has found.

The study, published in BMC Geriatrics, explored the experiences and perspectives of 20 residential or  care managers at 11 aged care homes in New South Wales and Victoria of dementia specialists HammondCare.

It found that continuous skill development of frontline staff, iterative family discussions, and partnership building between aged care staff and general practitioners are required for optimal end-of-life dementia care in aged care homes.

Senior researcher on the study Professor Josephine Clayton said the study found that aged care managers found delivering end-of-life dementia care relentless but rewarding.

“Staff are really passionate and committed about providing good end-of-life care for the residents but they did however experience a number of challenges in delivering that,” Professor Clayton told Australian Ageing Agenda.

Other themes identified in the research include the need to lay the groundwork to establish what families understand about dementia, play peacemaker in the face of unrealistic family demands and expectations such as for medical intervention and chip away at denial and cultivate a path towards acceptance of death.

“Families and even some staff didn’t necessarily think of about dementia as a life limiting or terminal condition, so there was a need for a constant education around that, which can be confronting for families,” said Professor Clayton director of HammondCare’s Centre for Learning and Research in Palliative Care.

“And because the residents at our facilities usually have lost the capacity to make decisions for themselves, it’s very much around the staff communicating regularly with the family members about what the person would have wanted,” Professor Clayton said.

The need to support and strengthen staff and befriend GPs comfortable with providing palliative care were the other themes identified in the study.

“Sometimes it might be junior staff who might not have experienced this death in their own life and it can be confronting for them to have to deal with death and dying. And so there was a need for constant education and support for the frontline staff,” she said.

“Some GPs were very uncomfortable with prescribing medications that might be needed to ensure a person can be in comfort at the end of life, or they might have an attitude of ‘oh something changed, go to hospital’, which was not what the family or the person would have wanted,” Professor Clayton said.

While addressing the barriers is “not just a simple fix,” it is positive that the aged care royal commission has highlighted some of these challenges, Professor Clayton said.

“There needs to be an investment in funds and education to support our frontline staff and to enable them to have those regular communications to support families,” she said.

Aged care staff and GPs also need to be rewarded and paid appropriately to attract the right people into the sector, Professor Clayton said.

“There’s a number of wonderful, dedicated GPs out there who do visit nursing homes, but for some of them is just not practical for their business to be able to come to nursing homes because it’s a lot of travel back and forth for that visit and they may not be appropriately remunerated, she said.

Access “A good death but there was all this tension around”- perspectives of residential managers on the experience of delivering end of life care for people living with dementia.

Complete Article HERE!

What the Pandemic Taught Us About the End of Life and Grief

Hospice workers, ethicists and therapists say grief is a pathway toward healing

By Vicky Diaz-Camacho

Grief felt “closer” this year for Meagan Howard. It’s the only way she could describe it.

On May 16, her good friend died in a car accident. There was something different about this death. As a Black woman in the mental health field, Howard said she has personally felt the compounding trauma of the pandemic with racial tensions.

That’s why it hit harder.

But as she sat in silence and cried with another friend to mourn their loss, she felt the release.

“That was more healing than someone saying, ‘It’s going to be OK’,” she said.

Meagan Howard
Meagan Howard is transparent about her own difficulty to grapple with grief and now encourages others to find ways to navigate sometimes complex emotions.

Years ago, Howard personally struggled to acknowledge the grieving process when her grandmother died. Now, she works against that to help her own clients who are navigating complex feelings of anger, avoidance and sadness — symptoms of grief — and in her personal life.

She specifically counsels folks with substance use disorders at Midwest Recovery Centers, which can often stem from unresolved trauma and loss.

The pandemic sparked a new kind of uncertainty, ranging from housing and job security to health security. This is why it’s more important now than ever to take a moment to pause and feel, she added.

A paper for the National Institutes of Health (NIH) on preparing palliative care providers explained that “anticipatory grief is the normal mourning that occurs for a patient/family when death is expected.”

That anticipation evaporated in the wake of the public health crisis. Back in March 2020, the number of people infected and dying from complications skyrocketed. This, mental health experts say, caused a mental health whiplash.

“As a society, we’re just kind of told lock it down, keep it moving,” she said.

However, she witnessed a shift this year that ranges between communal trauma to communal grief.

Howard said grieving as a society has been an essential step toward collective healing.

“One of the most powerful things that I saw from the pandemic is this sense of community,” she said. “There is power in being able to share your grief in a community setting with someone else. (It) gives us power when we feel like we don’t have any.”

From a mental health perspective, grief is healthy.

“It’s needed, it’s necessary, it’s essential,” Howard said.

“If we’re not allowing ourselves that grieving process, then almost in a sense we almost start to die internally. And I know that sounds kind of morbid, but that’s what it feels like is happening if we’re not allowing that to come out.”

Researchers at the NIH outlined what they call “context of grief” during the pandemic, which underscored how the public health crisis complicated an already sensitive process.

The study identified three specific changes during COVID-19: spread of the disease; social distancing and the increase of deaths; and hospitalizations and overburdened hospital systems. It outlined the financial, emotional, social and mental toll this would take on society at large.

Among the recommendations was to address grief head-on:

“Approach difficult conversations directly and do not shy away from discussing emotions, grief, and overall patient and family distress during advance care planning conversations.”

Trauma and loss experts have long advised families to begin conversations early about advance care planning. The idea is to ease ourselves into more comfortable conversations about what to do when someone we love dies. More importantly, these conversations serve as an emotional buffer.

Caring Conversations

Life unexpectedly changed, leaving communities unsure how to grapple with uncertainty and at the same time inciting communal trauma of seeing folks die from COVID-19.

This brought to the surface ethical considerations that impact the grieving process. How do families broach the subject of advance care planning or Do Not Resuscitate (DNR) orders?

That’s where Terry Rosell comes in. Rosell is an ethics consultant at the Center for Practical Bioethics — one of the only three centers of its kind in the United States.

(Disclosure: the author’s spouse recently accepted a job at the center. The interview was arranged and conducted without their involvement.)

Rosell, who is also a faith leader, works closely with medical professionals and has seen firsthand how COVID-19 changed the way in which families and their doctors approach life and death discussions.

Terry Rosell
Terry Rosell is an ethics consultant and educator for the Kansas City University of Medicine and Biosciences and the University of Kansas Medical Center. He also was a theology professor.

“It’s hard enough to die. It’s hard enough to deal with our loved ones dying. So we ought to make it better,” he said.

End-of-life care is also known as hospice and palliative care, which emphasizes keeping the person comfortable while they’re dying. This is part of what Rosell teaches when he presents to physicians and hospital staff.

“The first ethics matter around end-of-life care is taking care of these patients. Just because they’re no longer curative, just because they’re no longer receiving aggressive care, we still have a duty to care for them,” he said. “We ought not to abandon dying patients, right?”

Another part of his job is educating on advance care planning, which ensures a person’s wishes are fulfilled. To some extent, this practice can curb the anxieties that come with anticipating loss.

But not everyone may know what hospice care or advanced care planning entails, which brings to the forefront the lack of visibility of end-of-life services. What the pandemic revealed was the need to address these conversations earlier on.

This helps with the processing part of loss, Rosell explained. Death is a part of life and grief follows suit.

“Any kind of significant loss has a grief response. It’s just part of being human,” he said.

Part of being human is finding comfort in some sort of routine, whether that be spiritual or a ritual. To that end, Rosell added: “Don’t give up on the grief rituals during COVID times. It helps us”

‘I don’t know who I am anymore’

For Oscar Orozco, being vulnerable is part of his job.

Orozco was a former medical social worker for Children’s Mercy, where he helped at-risk children. Today, he works as a grief counselor at Kansas City Hospice and Palliative Care. He echoes Rosell’s points on advance care directives to reduce the added stressors of planning while someone is on the decline.

Oscar Orozco
Oscar Orozco, a grief counselor at Kansas City Hospice and Palliative Care, sees grief as an unpredictable wave.

Even though he’s been in his new role for a short few months, the need for counseling folks through the process has never been more clear.

This year hardly anyone has been able to catch their breath. Orozco said he has talked to health care workers who are friends or clients and they said: “I can’t do this. It’s too much.”


“(There’s) death and traumatic death, and it’s different. This is not death that people could see coming,” Orozco explained.

Another piece of complex trauma is identity and how folks have struggled to come to terms with the absence of their loved ones.

“In our grief work, what I hear almost often is, ‘I don’t know who I am anymore’,” he said. “People don’t realize that it’s much more than just the death of that person, but it’s the death of … routines, of day-to-day activities and memories and parts of our lives really that died with that person.”

He sees grief like an ocean. It’s unpredictable but sooner or later it’s easy to know when the waves are coming. Managing grief is like swimming, he explained, and sooner or later, we learn how to stay afloat.

Oscar Orozco with his grandparents
Oscar Orozco (middle) lost his grandfather a few months ago. He’s since learned how to process the loss by channeling his grandfather’s love of food into his own life.

That’s how he feels about the recent death of his grandfather. He channels his emotions into cooking, which is how his grandfather expressed his love for the family. This physical act helps him emotionally recover and process.

Processing is key, he said, but that’s been on the back burner for so many during the pandemic. So he advises folks who have experienced loss to be active and deliberate in the grief journey. That could mean going to their burial site for a visit, or it could be to buy their favorite meal from their favorite restaurant.

Grief is an individual process. Orozco advises people to embrace the emotion whether it be by crying, journaling, hiking or traveling.

“You know, whatever it is that comes out naturally to express, but never cast it aside because we’re afraid of where it might lead,” he added.

“We need to talk about this. We need to have those conversations because as uncomfortable as they might be, they could be lifesavers for (us) to continue to live our lives in a meaningful way.”

5 Tips on Navigating Grief

  1. Grief can be complicated and hard to pinpoint. That’s OK. Acknowledge the feeling or sensation (it could be a stomach ache, fatigue, lack of focus or emotions such as profound sadness or anger) as a first step. Experts say there are several kinds of grief:
    1. Complicated grief: When loved ones ruminate about the cause of death, worry about the consequences, feel guilty and display avoidant behaviors, such as denial. Around 7% of bereaved people will experience this kind of grief.
    2. Disenfranchised grief: When a loved one loses a person or child. It “can occur when families are unable to grieve with normal practices of social support and rituals in burial and funeral services,” according to the NIH.
  2. Asking for help to begin the grieving process is OK. “Grief counseling can help,” said Terry Rosell at the Center for Practical Bioethics. “Ministers, clergy, rabbis, priests, there are a lot of people who can help with grief counseling (for free).” You can find grief counselors at your local hospice organizations and mental health professionals who specialize in loss — for good reason. One example is the Solace House Center for Grief and Healing.
  3. Communication is powerful. Talk openly with family members, chosen family or biological relatives, or friends about their wishes before death — sick or not. Studies on the psychological impact of meaningful conversations — or saying “goodbye” — among family members of cancer patients show it helps with depression and complicated grief.
  4. Engage in activities that remind you of your loved one. This can also be characterized as play therapy if your loved one was an artist, which eases the transition from grief to acceptance. “I very much believe that spiritual practices or just rituals is how we get in tune with what our body is telling us about the loss we experienced,” said therapist Meagan Howard.
  5. Cry. Therapists advise sitting in a safe, quiet place or with a support network to embrace the feeling and release. This is good both physically and psychologically. Crying is the body’s “release valve,” according to Dr. Judith Orloff, who wrote: “After crying, our breathing, and heart rate decrease, and we enter into a calmer biological and emotional state.”

Complete Article HERE!

‘Music soothes pain’

— Paris cellist plays for end-of-life patients

By Reuters

Once a week, the rooms of the Jeanne Garnier palliative care home in Paris reverberate to a different sound: a solo cello.

Claire Oppert, a concert cellist trained at the Moscow Conservatory, visits the facility on Fridays to play for its residents – many of whom are struggling with physical pain as well as coming to terms with incurable illness.

“I’m in permanent pain,” said Micheline Leroux, a cancer patient at the care centre in southwest Paris, one of the biggest of its kind in Europe.

“But I find that music helps a little to escape the pain,” said Leroux quietly, after listening to a stirring rendition of Albinoni’s Adagio, a Baroque classic.

“You pay attention, and if it’s a piece you know, you anticipate each coming note,” she said.

Besides the weekly recitals, Oppert, 55, has made it her mission to demonstrate the therapeutic effects of music by taking part in medical studies on the subject.

Cellist Claire Oppert plays music to soothe patient Bernard Genin, 79, at end-of-life care home Jeanne Garnier in Paris, France, May 21, 2021.

Staff at the care home are in no doubt.

“After Claire leaves, we find the patients in a calmer state, sometimes moved, sometimes happy,” said carer Margarita Saldana. “There can be tears or moments of joy.”

Oppert has been playing to end-of-life patients for almost a decade since she first visited a nursing home with her cello.

“In palliative care there’s sometimes still pain, in spite of the morphine and drugs,” she said. “Music really does have a calming effect on that residual pain.”

Embracing death

— End-of-life doulas growing in popularity

Ashley Scott has worked as a death doula for more than a year and has her own private practice, Benevolent Care.

Ashley Scott wants people to feel safe, comfortable

By Kara Mason

Ashley Scott describes the emotional side of her job as a death doula like a fountain in the middle of a lake.

Her job is to help shepherd a dying person through an experience that is so intimate, common and yet mostly taboo in American culture. Scott wants people to feel comfortable, safe and cared for in their last moments.

“You’re pouring out this energy and love and compassion and space for them to consume it all,” she said. “I really didn’t realize the amount of energy it took until my last client.”

The client, a woman who had outlived her husband and daughter, was standing up and alert when Scott first arrived at her home.

“I know who you are,” Scott remembers her saying. “I’ve been waiting for you.”

It gave Scott, who has worked in hospice care for over a decade, chills. She’d taken care of many dementia and Alzheimer’s patients and somehow, even as agitation and bursts of energy can be common close to death, this was different. The statement seemed “very cognitive,” she said.

The woman’s room was disheveled, stuffy and a daytime court television show was blaring, so Scott said she put her in bed, turned on some instrumental music, rearranged the furniture a bit, opened a window and dimmed the lights. She rubbed the woman’s arms and her face to make her comfortable.

“In that five hours we were able to hold that space for her and help her go into an active dying transition,” she said.

The woman had been in hospice care for more than a year before that day.

Scott officially started her journey as a death doula a year ago, but caring for people at the end of their life has been her passion since starting as a certified nursing assistant at a nursing home.

“It was just so beautiful, like to help and be there and basically just prepare and honor the shell that this person had,” she said of the first death she experienced as a hospice nurse. “After that, it was kind of just like if anybody was on the brink, I had this inkling of magnetism to them. I want to make sure they’re cared for and comfortable and loved and appreciated in their last days because it’s their most vulnerable point in life.”

Throughout her career at nursing homes, Scott said she knew there was something missing in caring for the dying. There wasn’t anybody to “hold the space” – a phrase that many people involved in end-of-life care use frequently in reference to death doulas’ work.

It wasn’t until a friend had sent her a link to a Zoom seminar about death doulas last May that it all came together for Scott, who is 32 and lives in Aurora with her fiance. She’s part of a growing number of workers dedicated to making death a more comfortable experience.

Doulas, by loose definition, tend to all the duties of dying that medical personnel do not. In a lot of ways they’re equivalent to a wedding planner, but for your final living moments.

They can help arrange funeral services, help complete legacy projects, make sure the aesthetic of a death place is exactly what a client wants and help family members cope after the passing of their loved one.

“We treat dying like a fast food experience,” Scott said. “And it should be treated like a five-course meal.”

For people who work in hospice care, the arrival and growing popularity of the death doula is welcomed, and it’s changing the approach and culture around an experience everybody will have.

Evolving care

Katelyn Van Valkenburg, the volunteer coordinator at Denver-based Namaste Hospice, jokes that she’s a little protective of Scott, who first started volunteering her doula services in November.

Van Valkenburg said she doesn’t want Scott to become overworked or burnt out because it’s become obvious how necessary doulas are to hospice care. Before Scott, the organization consisted of nurses, social workers and volunteers, but after working with Scott they’ve welcomed five more volunteer doulas.

“Some of us in hospice have grown accustomed to the routine death,” Van Valkenburg said. “They force us back into thinking about making this unique.”

Scott arrived at Namaste after two waves of the COVID-19 pandemic, but it felt “kind of like a new beginning,” Van Valkenburg said. For months, hospice nurses had been scrambling to care for patients, some inside nursing or retirement homes. Early on in the pandemic, sometimes Namaste’s workers weren’t even allowed inside facilities and had to find ways to comfort their dying patients from bedroom windows or over the telephone or a computer.

“It shook us to our core,” she said.

Nurses and social workers had to become creative, Van Valkenburg said. They arranged the donation of more than 150 radios for their patients, and they put aromatherapy diffusers in patient rooms when they could to make the atmosphere as comfortable as possible.

This winter, adding doulas to their care model helped hold the caretakers to “being fully present,” she said.

Even though neither private insurance nor Medicaid covers the cost of doulas, like it does for end-of-life medical care through a hospice organization, Namaste wants to eventually be able to pay its doulas. For now, they volunteer their services, mostly to meet requirements through certification programs.

Scott started her own private doula practice, called Benevolent Care, where planning services can range from $70 for one hour of Death Day planning to an extensive package where Scott is available around the clock. She said she usually works those costs out on an individual basis.

“Everybody is so different, and I don’t want to deny them,” she said.

While doulas don’t administer medical care, Nancy English, an assistant professor who teaches palliative care at the University of Colorado Anschutz Medical Campus, says there’s definitely a role for them in hospice settings.

“We need to look at death as important as birth, it’s a transition from one state to another. We know it’s a major transition, even if we don’t know what’s next,” she said. “The death doula helps us make it more sacred.”

English said she recently took a course for death doulas, and while she doesn’t plan on practicing as one, she wanted to see how it could help her prepare students for providing more holistic care.

“A doula can take the time to actually address some of the things that have been fragmented in care,” English said. “I think nurses are so creative and so caring as a group, and they want to do it, but you have one patient that’s dying in this bed and the next patient is coding. It’s just a difficult role.”

English, who was a hospice nurse herself for many years before becoming a professor, said the workload just doesn’t lend itself to the kind of one-on-one attention and comfort a doula can provide.

Scott said she believes her background as a hospice nurse has helped her in becoming a doula because she understands the medical jargon and also the struggle in not being able to comfort each patient as much as they might need.

It’s also good for the families of people in hospice care.

“Imagine having someone on your side, someone who is really right there with you walking alongside you in this process,” she said. “Someone that you could call who was there with you that saw certain things that maybe you missed, and you can call them and just be validated.”

“You’re drawn to it because either you have a curiosity or an experience,” she said.

The movement

The moment Scott learned that death doulas existed, she said she knew it was for her. That tends to be the case with most people who work in end-of-life care, said Cindy Kaufman, president of the Colorado End of Life Collaborative.

“You’re drawn to it because either you have a curiosity or an experience,” she said.

Kaufman and a small group of other doulas organized the collaborative because they saw a need for a common place for people working in the field. Somewhere they could connect services if they needed or just have a support system. The community has been steadily growing over the years, but Kaufman said she really saw an uptick about three years ago.

That’s in part because of a growing “death positive” movement, she said, which is largely credited to Los Angeles-based writer, activist and mortician Caitlin Doughty. In 2011, Doughty started a collective called The Order of the Good Death, which became a foundation for much of the crusade to see death in a brighter light.

Since then, death doulas have grown in popularity, according to Kaufman. There isn’t a sure way to tell just how many doulas there are in Colorado because they tend to work in their own private practices or through volunteering like at Namaste.

The movement has also birthed “death cafes” – groups where people can gather to talk about all aspects of dying – all over the country. English started a Denver-based death cafe in 2014, which typically met Sundays at the Tattered Cover bookstore before the pandemic. For the last year, she’s been hosting a small group on Zoom.

“They’ve been wonderful,” the professor said, echoing Kauffman that Westerners are beginning to view death in a different way.

Kaufman, English and Scott each say they see the shift, and maybe the pandemic – a collective experience of sudden death – may push forward even further.

“A life lost is a life lost and we need to honor that, and during COVID we didn’t get to,” Scott said. “We didn’t get to honor the dying process. It literally just happened, and I guess that’s what really drew me into being a doula. We get to honor the process.”

Complete Article HERE!

How The Pandemic Has Exposed The Gap In Bereavement Support

By Katie Lynch

Workplace well-being and employer benefit packages have been expanded and highlighted in recent months in light of current events and as companies look to attract talent and build loyalty within their organizations. While vacation time, remote and flexible working, paid parental leave and other wellness perks are often touted as part of a progressive company culture, bereavement leave and grief support still remain a gaping hole in the employee value proposition, leaving people scared to share or ask for help during difficult life events at work.

Even in the wake of Covid-19, I find the conversation around grief and loss in the workplace lacking. Few companies have truly publicly acknowledged the devastating loss of this past year and its impact on employees. As of this writing, the death rate from Covid-19 in the U.S. has surpassed 580,000 Americans, leaving an estimated5.2 million Americans grieving (according to a recent calculation that for every person lost to Covid-19, nine close family members are left to grieve). It is undeniable that this pandemic has affected each one of us, so suffice it to say that all Americans have experienced grief and loss this past year. Why then are companies not talking about its impact on their employees and offering more support?

Companies that strive for empathetic and inclusive cultures need to acknowledge these issues and remove the stigma associated with grief and death in the workplace. According to the Society of Human Resource Management’s (SHRM) 2019 survey, 89% of employers were providing some form of bereavement leave to their employees. However, traditional bereavement leave lasts just one to four days, depending on the employee’s relationship to the deceased. Not only are some companies still not providing leave, but those that do provide it often fail to provide an adequate amount of time away and lack ongoing support for employees dealing with a grief event. When a company only provides employees with one day off following the loss of a loved one, it signals a lack of empathy and support from leadership.

Something that may be contributing to the lack of discussion about grief in the workplace is the lack of any federal or state legislation requiring companies to provide paid leave to their employees. Currently, there is no federal requirement to provide paid leave even for a funeral, let alone time to grieve one’s loss. The fact that the U.S. Department of Labor calls this “funeral leave” and not even bereavement leave shows how antiquated our view of bereavement remains. In an encouraging turn of events, President Biden recently announced the American Families Plan, which would immediately guarantee three days of paid bereavement leave if passed. As of today, though, Oregon is the only state to sanction the overarching need to support grieving employees with a law requiring bereavement leave for employees, with California hoping to follow suit as legislators consider a similar bill.

While some companies are investing in programs to help employees in need, there is room for further support. Having spent years working with people through challenging life transitions, I know firsthand that dealing with grief and loss is not just a single moment in time, and it almost always requires ongoing guidance, education and specialized support.

In 2017, two years after the tragic death of her husband, Facebook COO Sheryl Sandberg famously placed the company at the forefront of the bereavement discussion by championing the need for expanded bereavement leave policies for employees and recognizing that employers need to support their people throughout these situations. Yet, little has changed outside of a select few companies, including Facebook and SurveyMonkey, both supplying bereavement leave of 20 days for immediate family members and 10 days for extended family members. Mastercard, Zillow and New York Life Insurance Company have all in recent years adopted bereavement leave policies of 10 to 20 paid days, depending on who passed away.

While there were great hopes that 2020 would usher in a new era of discussing grief and loss in the workplace and providing employees with adequate leave and support, either internally or with the help of a third party, many companies have failed to take this crucial step. What is so shocking is that even before Covid-19 wreaked havoc on our world, it was reported that grief costs employers an estimated $75 billion each year in lost productivity alone. This number has most certainly skyrocketed in the past 14 months. What we are experiencing now is not new, but it has been worsened. If the risks and costs to businesses are so severe, why do companies not invest more heavily in supporting these employees?

Moving Forward

We need to use the momentum from Covid-19 to do better for our employees. With this mission helping to drive my company and me, we are having these difficult conversations with clients and are providing their employees with proper support in this area. We are hopeful that moving forward, more companies will recognize their responsibility to promote conversations in the workplace on dealing with grief and loss as well as training managers and employees on how to support colleagues following a grief event.

Companies that want to lead with empathy and be at the forefront of this movement will need to model their programs after progressive examples and invest in programs offering robust and ongoing support to employees following a loss. They will also need to create policies that are more inclusive, ensuring that bereavement leave is not just given for the death of a parent, spouse or child, but any family member to whom the person was close. This should also include miscarriage. In addition to leave, companies should also provide employees with ongoing and more robust emotional, administrative and logistical support.

Lastly, the topics of death and grief must become part of the conversation in the office, and managers and leaders need to get comfortable with the uncomfortable. The results will be seen in both better business outcomes and profits as well as a happier and healthier workforce overall.

Complete Article HERE!