What Is a Death Doula?

Here’s Everything You Need to Know

by Sydni Ellis

Doulas are compassionate people who help others navigate some of life’s biggest transitions. Some doulas provide support and care to women bringing babies into the world, while others help ease individuals through the difficult and emotional passing of a loved one. These people are known as death doulas, or end-of-life doulas.

Recently, Riley Keough — granddaughter of Elvis and Priscilla Presley — announced on Instagram that she recently completed The Art of Death Midwifery training by Sacred Crossings and is on her way to becoming a certified death doula. In the post, she said, “I think it’s so important to be educated on conscious dying and death the way we educate ourselves on birth and conscious birthing. We prepare ourselves so rigorously for the entrance and have no preparation for our exit.” Riley’s decision to become a death doula comes almost a year after her brother, Benjamin, died by suicide in July 2020 at the age of 27.

Many other women have decided to take on this noble role of helping people in their final days. There are various courses that will certify you as a death doula, including the International End of Life Doula Association (INELDA). This association trains doulas to a high standard of professionalism, where they learn how to listen deeply, work with difficult and complex emotions, explore meaning and legacy, utilize guided imagery and rituals, assist with basic physical care, explain signs and symptoms of last days, guide families through the early days of grieving, and more. We talked to a few death doulas to find out more about this unique profession.

Dana Humphrey, a New York-based life coach and death doula who is certified through INELDA, told POPSUGAR, “Death doulas help the active dying transition with ease. We help them have difficult conversations with their loved ones, so they may say goodbye with grace. We help them figure out their legacy project and help them complete it. We add presence to the dying during a busy hospice environment. We also provide support to the family if they are having a hard time with the transition.”

Death doulas are the people that hold the hand of a dying person, ask them about their wishes and try to make them happen, and advocate for them every single day, according to Humphrey. Some of the things she might do include asking the dying person what mood they would like to see and feel when the family comes to visit and then setting that tone, like by having guests take a minute to sit down and move to a place of gratitude before visiting their loved one. Or she might have visitors meet in a “fun station” to put on funny hats or bedazzle themselves in glitter to add lightness in the room.

How Is This Different From Hospice Care?

Suzanne O’Brien, RN, is the founder of the International Doulagivers Institute, who’s mission is to provide awareness, education, support, and programs to communities, patients, and their loved ones worldwide to ensure the most positive elder years and end-of-life process. She told POPSUGAR that a death doula is “a nonmedical person trained to care for someone holistically (physically, emotionally, and spiritually) at the end of life.” This job “recognizes death as a natural, accepted, and honored part of life.”

After years of working as a hospice and oncology nurse, O’Brien felt unfulfilled working hospice, where nurses manage the dying patient’s care but teaches the family how to do the actual 24/7 care. She said she typically didn’t have enough time with patients on hospice as she was only allowed about one hour, once a week with the patient, and she encountered many families afraid of death. This helped her realize that death is “a holistic human experience and not a medical one,” and she wanted to become a death doula instead.

“Every day brings different needs, but it will always center around support,” O’Brien explained. “I will get called by a family whose loved one was just given a terminal diagnosis and they do not know what to do next, or a family whose loved one is actively transitioning and needs more help in the home. [I also get] many calls from families and community members looking for education and resources to help facilitate the most peaceful passing possible.”

How Do Death Doulas Help Marginalized Communities?

Donna Janda, Thanadoula practitioner (another term for death doula) and registered social worker, and Ananda Xela, Thanadoula practitioner and life coach with over 20 years’ experience in social work who has trained with INELDA, both founded Embracing Daisies to empower clients to “see the cycle of life and death not as something to simply rise above but as something to move through with soul and awareness, creating a living and lasting legacy.” They chose this profession to deal with their own feelings about death, as it helped them let death inform the fullness of their own existence, as well as to become part of this burgeoning field in which they didn’t see themselves or other BIPOC well-represented.

“There can be different ways of seeing and dealing with death, and when we talked to both clients within our Black communities and other doulas outside of our communities, we noticed the differences in approach and practice,” Janda and Xela told POPSUGAR. “A lot of the work that takes place in our own communities involves more emphasis on creating comfort around the idea of just talking about death in an honest and open manner before reaching the point of being able to plan for it. It can be a challenge for people who are already in vulnerable positions, historically and personally, to find the desire to face death and accept the idea that it can create more joyful living and offer more control over one’s own narrative — something that is often denied to marginalized peoples.”

Janda and Xela said, “To us, a death doula is someone who can hold space and offer support to both an individual and their loved ones in various areas all along the path between living and dying — from the parts where death seems unimaginable to the parts where it seems inevitable.”

As Thanadoula practitioners, these women hope to aid their clients in seeing that “life and death are connected and give meaning to each other.” They believe that deaths can matter as much as lives, and their job as death doulas is to help patients “discover, create, articulate, and manifest your heart’s wishes.” They also give families space to grieve by taking care of some of the more practical aspects that come from someone nearing the end of life.

What Else Does Someone Need to Know Before Becoming a Death Doula?

If you are thinking about becoming a death doula, you should have a passion for other people, an open-mindedness about death, and the courage to help people through difficult times. O’Brien said, “People often ask, ‘How can you do that work? It must be so depressing.’ I have to say that it is the exact opposite. Working as a death doula has been the hardest thing I have ever done, but the most fulfilling and rewarding. It is an honor and privilege to work with families at this sacred time. What you learn from those at the end of life is wisdom that teaches us about life. It is the best decision I have ever made.”

Complete Article HERE!

Why is access to medically assisted death a legislated right, but access to palliative care isn’t?

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John started his first appointment in the Neuropalliative Care Clinic with, “I want to talk about MAID.” In our clinic, his request for medical assistance in dying is common. As legislated by government, I referred him to the MAID navigator. I had one request: that John wait to make his MAID decision until after seeing a community palliative care physician.

At his next appointment, John informed us he had withdrawn his MAID request because his primary symptom —pain — was now well controlled after our suggestions and those of the community palliative care doctor. John lived for two more years, during which he became closer with his daughter and continued to enjoy the company of his siblings.

John is not unusual. Neurologic illness accounts for 18 per cent of deaths in the Canada but rarely has palliative care involvement. By contrast, cancer accounts for 20 to 30 per cent of deaths, but typically receives 75 per cent of palliative care.

Part of the challenge is that palliative care services are often hospital-based, but most people who could benefit get their care in the community. Similarly, patients have recently refused palliative care in the belief that is the same as MAID. In 2017, MAID accounted for 1.07 per cent of deaths in Canada, increasing to two per cent in 2019.

In June 2016, the passed legislation that gave all eligible Canadians the right to request MAID. Colleges of Physicians and Surgeons required physicians to refer people who request MAID to services or arrange for a physician who would make the referral.

A male doctor consulting with an older female patient
The workforce for palliative care is inadequate to meet the needs for Canadians with chronic burdensome illnesses.

Since then, every province and territory devoted resources to navigate requests and assessments for MAID. Typically, provinces have a website for self-referral, easily found by internet search and/or dedicated health-care staff to help navigate the MAID process or inform those who are MAID-curious.

Complicated referrals

By contrast, the referral process for palliative care is often convoluted. Many provincial web pages simply give a definition of palliative care (some confuse the issue by including the MAID navigation site) but do not provide a central access point for physicians or nurses. Referral forms (where available) are complex, which creates another barrier to access. Many palliative care programs have an unofficial prognosis of three to six months’ life expectancy for services, despite research demonstrating that early palliative care improves outcomes and in fact, can prolong life.

What is the disconnect? Health-care providers are an unexpected barrier as they often cling to the belief that palliative care is for the imminently dying or means to give up hope. For the public, palliative care means dying soon.

But modern palliative care is about living well now, meeting patients’ goals and finding meaning in life. For John, we helped him set goals, focused on the positive in his life, like his better relationships with his children and ongoing closeness with his siblings. His sharp sense of humour emerged despite communication challenges.

Additionally, many palliative care programs exist in the oncology (cancer) department and thus, their focus is cancer-based. Twenty per cent of people die from cancer, but receive 75 per cent of palliative care services. Current training for palliative care physicians requires exposure to other patient populations like heart failure, kidney failure and neurologic illnesses, but health-care systems are slow to change.

A man in a hospital bed and a woman holding his hand, listening to a doctor whose back is to the camera.
Placing as much importance on palliative care as we do on MAID might make navigation to palliative care less difficult.

And finally, the workforce for palliative care is inadequate to meet the needs for Canadians with chronic burdensome illnesses.

Making palliative care more accessible

The solution requires a multi-faceted approach. All health-care providers need to have general palliative care skills because, in the way we all learn to control blood pressure and read a basic electrocardiogram, palliative care is part of good medical care.

At a systems level, placing as much importance on palliative care as we do on MAID might make navigation to palliative care less difficult for patients and clinicians. Given the broader applicability of palliative care, it is time for palliative care to become an independent department. Up to 28 per cent of Canadians will be seniors, which means more people with multiple, chronic conditions that could benefit from a palliative approach.

Building the palliative care workforce is essential. The palliative care workforce in Canada is estimated to be 773 doctors for a population of 39 million. Once the palliative care workforce is established, educating the public that palliative care includes a holistic approach to wellness and meaning in life can help re-frame and increase acceptance.

There are more people like John who should connect with a palliative care team before walking down the road to MAID. Let palliative care help you live well, now.

Complete Article HERE!

Dr. Ruth talked about sex in the 1980s. Now it’s time to talk about death

‘The pandemic has waved death in our face. Mortality is now at the forefront’

Karen Hendrickson and Jo-Anne Haun founded the Death Doula Network of BC, an online community devoted to the death positive movement operating out of their homes in B.C in April, 2020. They started the network to help people dealing with grief during the pandemic

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Only Karen Hendrickson and Jo-Anne Haun, co-founders of Death Doula Network of BC (DDNBC), can approach the topic of death with the perfect balance of positivity, passion, and of course, dark humour.

“Back in the 1980s, Dr. Ruth talked about sex,” Haun said in a Zoom interview from B.C. “She brought education and humour to it and now our children are learning about it in schools. That’s what we would like to do with death.”

Commonly associated with births, doulas offer physical and emotional support. They often handle administration and act as a go-between for patients and medical staff to minimize stress for patients and their families.

But doulas also play a role in end of life. “Death doulas” not only fill the gaps between patients and the health-care system, but also bridge the gap between the health-care and funeral industry. Their work has become particularly important during the COVID-19 pandemic, which has isolated dying patients, interrupted death rituals and placed extra stress on families.

Hendrickson and Haun, who have been friends for 20 years, became death doulas together back in 2018. They founded the virtual group to start a discussion around death and dying for anyone interested in the death-positive movement.

DDNBC has grown quickly and continuously since their first virtual meeting in April 2020. The network now has close to 140 members throughout Canada and around the world.

Karen Hendrickson and Jo-Anne live four hours apart and saw the opportunity to work together to create the virtual network DDNBC, during the pandemic, April 2020.

Gaps in the health-care system

Hendrickson and Haun have been part of the fight to include doulas within the health-care system to help fill some of the gaps between the system as its patients.

“You have likely heard of the rock metaphor before. Basically, The big rocks are the diagnoses. The medium rocks are your support people. The small rocks are your treatments. The sand in between the rocks is the doula,” Hendrickson said.

Things like confusing paperwork, new medical teams, and unfamiliar systems have a devastating emotional impact on patients and their families.

Hendrickson described an instance where a young patient with terminal cancer kept having to renew his burial permit but the medical staff continued to insist that it wasn’t important. That form is required by funeral services to take the person’s body from their home. Without an up-to-date form, the funeral service would refuse to take the body and the family would have to call the police.

“They would arrive with their sirens on and everything, and be forced to treat it like a crime scene because that’s their mandate,” Hendrickson said. “Imagine grieving families having to witness that.”

Ingrid Ollquist, based in Los Angeles, started as a birth doula in 2017, mainly supporting people through abortions and miscarriages. She decided to become a pre-planning and post-death doula after receiving emotional support from a doula mentorship program herself.

After a 10-year battle, Ollquist lost her mother to multiple sclerosis (MS). During this process, she was in and out of hospitals dealing with lots of administration with little support. As a death doula, she hopes to prevent others from experiencing this stress and isolation.

“It brought distance between my mom and I,” Ollquist said. “It was so frustrating to just live in logistical spaces with a person that you love that you can see dying in front of you.”

Ollquist is now the founder of the free grief support group Nurture Ing after being mentored by Jill Schock, the founder of Death Doula LA (DDLA).

COVID-19 has changed how we die

COVID-19 has made the gaps between health-care and funeral industries larger. Government regulations restrict patients from having more than one support person when in a hospital.

For death doulas, these restrictions mean patients die without their loved ones by their side. Doulas and family members must connect with the dying patient virtually.

“A COVID death is horrific. It’s the worst. You are losing more than just life, but all end-of-life rituals,” Ollquist said.

Many memorial and funeral events have been cancelled, and burial and cremation services have been substantially delayed.

Olliquist hasn’t personally dealt with more clients but she has played a larger role in supporting other doulas. She says that many doulas are now experiencing death anxiety after witnessing numerous horrific deaths all over the world. People of all different ages are dying without family and without rituals.

DDNBC and Ollquist suspect that more people are going to be thinking about (and planning for) their deaths after the pandemic.

“The pandemic has waved death in our face. Mortality is now at the forefront,” Haun said.

Complete Article HERE!

In ‘The Living Sea of Waking Dreams,’

— Last-ditch medical interventions are their own horror story

Confined to a hospital bed, her 86-year-old body shutting down, her mind “breaking into fragments and receding,” Francie asks a nurse to bring her a contemporary novel. The nurse returns with, of all things, “Sabbath’s Theater,” Philip Roth’s sexually explicit work about an aging, suicidal creep. It’s just one of many indignities visited upon poor Francie in “The Living Sea of Waking Dreams,” Australian writer Richard Flanagan’s latest novel.

Flanagan won the prestigious Booker Prize in 2014 for “The Narrow Road to the Deep North,” an extraordinary novel about Australian POWs during World War II that is unsparing in its considerations of human cruelty. “The Living Sea of Waking Dreams” shares its predecessor’s concerns but little of its power.

A survivor of cancer and the brain-damaging condition hydrocephalus, Francie is back in the hospital when the novel opens. She has “taken a bad turn,” and her condition worsens after she falls and experiences a brain hemorrhage. As Francie’s decline accelerates, her three late-middle-aged children become increasingly determined to keep her alive. They force their mother into last-ditch medical interventions with the complicity of a health-care system Flanagan suggests is more interested in its well-being than that of its patients. Because “The Living Sea of Waking Dreams” is essentially a horror story, their efforts succeed.

Yet this is not Francie’s story. It’s about Anna, the eldest child, only daughter and family narcissist. An architect, Anna is frequently summoned from Sydney to her birthplace in Tasmania by her blue-collar brother Tommy, whom she disdains for being “that most bourgeois of embarrassments: the lower-class relative.”

Her assessments of Francie are even ranker. She looks upon the woman’s “wretched body” as nonhuman, “a carapace of something long ago caught and killed in a spider’s web.” Her reactions to Francie’s scent are equally unkind.

Allowing that her once-strict mother’s “true nature . . . was open, gentle, and loving,” Anna initially wishes for Francie to die so her pain can end. But then, Anna’s ego intervenes. “And precisely because of her shame she saw that henceforth she would have to devote her very being to keeping her mother alive,” Flanagan writes. From there, Anna’s justifications for Francie’s torment pile up like so many medical bills.

Anna has an ally in her youngest brother, Terzo, a businessman who discusses the prolonging of Francie’s life in terms of “victory” and “triumph.” They bully Tommy, whose stuttering they mock and whose poverty they find offensive, into agreeing with them about Francie’s care. “As Terzo put it, with a smile,” Flanagan writes, “they were a board of directors examining a newly acquired corporate takeover.”

Flanagan gets close to something good here, a wicked take on end-of-life care, economic privilege and hubris in the face of death. “The Living Sea of Waking Dreams” can even be viewed as a decent allegory on the climate crisis, which Anna contemplates while scrolling through Instagram, often while on the toilet. In one welcome, Jenny Offill-like moment, Flanagan writes: “How did you adapt to your own murder, wondered Anna as she watched a cat video. Was that what was happening? Were they adapting to their own extinction? Was she?”

If only Flanagan weren’t so obvious about it all. No point in this book is too plain that it can’t be blasted with a spotlight. As Anna watches Australia burn from the narcotizing screen of her phone, her mother vanishes into hallucinations of one-eyed CIA agents and “animals turning into birds and then into plants.” Piece by piece, Anna also begins to fade away. A hand disappears and then a knee, as if they’ve been digitally erased. She feels no pain, and her mobility is unaffected. “But now it had vanished she realised she missed it,” Anna thinks of her invisible knee. “But like the aurochs it was gone. Like the thylacine and the Walkman. Like long sentences. Like smoke-free summers. Gone, never to return.” Like a reader’s patience.

That Anna is unlikable doesn’t really matter, of course. Cold hearts and warped minds make for great literature. What irritates most about Flanagan’s novel is that Anna is more a character than a person. She’s hard to take and harder to believe. Is Anna, in her late 50s, really “shocked” to discover that Francie is more than just a mother but “an adult independent of [her family] and their needs”? Does it really take her so long to realize that postponing Francie’s death is not the same as giving her life? Is she only now understanding that “the more the essential world vanished the more people needed to fixate on the inessential world”? Did she really not know any of this? Did Flanagan?

Complete Article HERE!

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 josephsternmd.com.

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.”

Why?

“(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.”

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