Category: Death Education

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Death Doulas Adapt to Pandemic to Provide End-of-Life Support

COVID-19 prompted virtual visits, more interest in ‘death coaches’

by Robin L. Flanigan

Most Americans say they’d prefer to die at home, and indeed rates of home deaths are on the rise — a trend that may be fueled by the coronavirus pandemic and decreasing nursing home occupancy rates.

But having someone help navigate that end-of-life experience can be essential. Sometimes called a death coach or a death midwife, death doulas act as advocates for the dying, guiding everything from logistical preparations, such as advance care planning and funerals, to incorporating cultural and religious beliefs into final rituals.

“It’s kind of like being an event planner, but for death,” says Virginia Chang, a certified end-of-life doula in New York City.

COVID-19 has forced death doulas to adapt to pandemic restrictions and to new client needs. Those in private practice have had to offer more support over the phone and via Zoom, Chang says. At the same time, given a shortage of home care services, doulas have found themselves providing increased emotional support to caregivers, who may feel isolated or overburdened.

Virtual visits were an adjustment for Chang, who provides services through her business, Till the Last. “I do miss the intimate connection established between myself and the dying person through quiet conversation, presence and touch,” she says. “However, I have always said that empowering the caregivers to better care for their dying loved one meets my goal of better care for the dying person. So, I’m still doing my job.”

Chang has also noticed that patients and family members are getting in touch earlier than usual. Instead of being summoned weeks, or even days, before death, she is being contacted months, and sometimes years, before an anticipated death.

“They want to be better prepared,” she says. “By being better prepared, they’re better able to face death when it comes.”

Death doulas a ‘missing piece’ in care

Home has surpassed the hospital as the most common place of death in the United States for the first time since the early 20th century, according to a New England Journal of Medicine study published in 2019 (months before COVID-19 hit the U.S., which means that the number of home deaths is likely higher now).

Studies have shown that approximately 80 percent of Americans would prefer to die at home if possible, according to the Stanford School of Medicine. That figure may be higher now, after the pandemic focused people’s attention on death and dying, but COVID-19 has certainly amplified interest in the role of death doulas, says Henry Fersko-Weiss, 73, a licensed clinical social worker who, in 2003, created the first formal end-of-life doula program in the U.S., at a New York City hospice, and cofounded the International End of Life Doula Association.

“The recognition that death can be done differently is increasing because there’s been so much talk about death and dying,” he observes.

Though the work that death doulas do has probably gone on for thousands of years and been called different things, Fersko-Weiss says, the death doula movement gained steam two decades ago, offering meaningful services to those who felt limited by a traditional medical system.

“End of life needs more than crisis intervention,” he says. “This is a missing piece during a very demanding time in people’s lives.”

Fersko-Weiss cautions that people who are interested in working with a doula should know that no industry standards currently exist and that a certification by one organization doesn’t hold the same value as a certification by another.

Chang, for example, learned about end-of-life doulas after attending a talk that Fersko-Weiss gave. She has since been trained by the International End of Life Doula Association, the University of Vermont End-of-Life Doula Professional Certificate Program and the Visiting Nurse Service of New York.

Ask plenty of questions

Doulas support the dying, but they also provide services to those left behind.

Arlene Stepputat, 67, volunteers as a project manager for the nonprofit National Hospice and Palliative Care Organization’s End-of-Life Doula Advisory Council. The council’s Doula Grief Project, which offers free and confidential grief support services to those dealing with loss, grew out of the COVID-19 restrictions and the fact that most doulas couldn’t work in person with clients and families.

Experienced end-of-life doulas, trained in compassionate listening, provide one-hour telephone or videoconferencing sessions over four weeks as normal support systems continue to be taxed.

People who are considering the services of a death doula should ask plenty of questions, advises Stepputat, owner of Dying in Grace. “Interview that person like you would any other person you’d be making a contract with,” she says.

The National End-of-Life Doula Alliance offers an online state-by-state directory of doulas.

Some questions to ask a death doula are:

  • What is their experience?
  • What do they charge?
  • Where were they trained?
  • Why do they do this work?

Stepputat, who lives in Santa Barbara, California, was drawn to this occupation because of multiple losses: Four days before her 12th birthday, her father died in an accident; when Stepputat was 19, her girlfriend was murdered; and several street youths she worked with as a young adult died from suicide and other causes.

“Choose wisely because you are going to use this person in one of the most challenging times of your life,” Stepputat says. “It can also be one of the most sacred and beautiful times of your life. Creating a peaceful transition for someone you love is a gift.”

And the benefits of a doula-patient relationship go both ways, according to Terry Bonebrake, 58, of Grand Rapids, Michigan, a death doula who says she reaps rewards from her work.

“Anytime you do service work, your focus is on the other person, and yet you learn things you might not ever have known otherwise,” she notes. “What’s probably affected me the most is seeing how much every moment counts. This 60 minutes and the next 60 minutes will never be the same again.”

What do death doulas do?

Doulas “inform, support and guide, rather than advise or do,” explains Merilynne Rush, who offers end-of-life doula training, mentoring and certification through her consultancy, The Dying Year. Rush says end-of-life doulas can:

  • Help form a circle of support and find tasks for those who want to help.
  • Conduct a life review: Record stories, make a video or write letters to loved ones for future occasions.
  • Provide hands-on nonmedical comfort, such as guided imagery, breathing and relaxation techniques, hand massage and essential oil therapy
  • Sit bedside so family and caregivers can rest.
  • Pray; meditate.
  • Offer active listening.
  • Share information about local resources, like hospice and palliative care.
  • Prepare meals and do light housework.
  • Discuss wishes for end-of-life care (advance care planning).
  • Help arrange for (or keep) vigil during active dying.
  • Share information about home funerals, green burials and body care after death.
  • Offer grief support and ongoing visits after the death.

Complete Article ↪HERE↩!

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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↩!

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Death-friendly communities ease fear of aging and dying


Improving death-friendliness offers further opportunity to improve social inclusion. A death-friendly approach could lay the groundwork for people to stop fearing getting old or alienating those who have.

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Death looms larger than usual during a global pandemic. An age-friendly community works to make sure people are connected, healthy and active throughout their lives, but it doesn’t pay as much attention to the end of life.

What might a death-friendly community ensure?

In today’s context, the suggestion to become friendly with death may sound strange. But as scholars doing research on age-friendly communities, we wonder what it would mean for a community to be friendly towards death, dying, grief and bereavement.

There’s a lot we can learn from the palliative care movement: it considers death as meaningful and dying as a stage of life to be valued, supported and lived. Welcoming mortality might actually help us live better lives and support communities — rather than relying on medical systems — to care for people at the end of their lives.

 

The medicalization of death

Until the 1950s, most Canadians died in their homes. More recently, death has moved to hospitals, hospices, long-term care homes or other health-care institutions.

The societal implications of this shift are profound: fewer people witness death. The dying process has become less familiar and more frightening because we don’t get a chance to be part of it, until we face our own.

Fear of death, of aging and social inclusion

In western cultures, death is often associated with aging, and vice versa. And a fear of death contributes to a fear of aging. One study found that psychology students with death-anxiety were less willing to work with older adults in their practice. Another study found that worries about death and aging led to ageism. In other words, younger adults push older adults away because they don’t want to think about death.

A clear example of ageism being borne out of a fear of death can be seen through COVID-19; the disease gained the nickname “boomer remover” because it seemed to link aging with death.

Grandparents with masks seen pressing hands against window looking at granddaughter

The World Health Organization’s (WHO) framework for age-friendly communities includes “respect and social inclusion” as one of its eight focuses. The movement fights ageism via educational efforts and intergenerational activities.

Improving death-friendliness offers further opportunities to improve social inclusion. A death-friendly approach could lay the groundwork for people to stop fearing getting old or alienating those who have. Greater openness about mortality also creates more space for grief.

During COVID-19, it’s become clearer than ever that grief is both personal and collective. It’s especially relevant to older adults who outlive many of their peers and experience multiple losses.

The compassionate communities approach

The compassionate communities approach came from the fields of palliative care and critical public health. It focuses on community development related to end-of-life planning, bereavement support and improved understandings about aging, dying, death, loss and care.

The age-friendly and compassionate communities initiatives share several goals, but they don’t yet share practices. We think they should.

Originating with the WHO’s concept of healthy cities, the compassionate communities charter responds to criticisms that public health has fallen short in responding to death and loss. The charter makes recommendations for addressing death and grief in schools, workplaces, trade unions, places of worship, hospices and nursing homes, museums, art galleries and municipal governments. It also accounts for diverse experiences of death and dying — for instance, for those who are unhoused, imprisoned, refugees or experiencing other forms of social marginalization.

The charter calls not only for efforts to raise awareness and improve planning, but also for accountability related to death and grief. It highlights the need to review and test a city’s initiatives (for instance, review of local policy and planning, annual emergency services roundtable, public forums, art exhibits and more). Much like the age-friendly framework, the compassionate communities charter uses a best practice framework, adaptable to any city.

Multigenerational family, walking, holding hands on the beach.

Age-friendly initiatives could converge with the work of compassionate communities in their efforts to make a community a good place to live, age and, ultimately, die.
There’s a lot to like about the compassionate communities approach.

First, it comes from the community, rather than from medicine. It brings death back from the hospitals and into the public eye. It acknowledges that when one person dies, it affects a community. And it offers space and outlets for bereavement.

Second, the compassionate communities approach makes death a normal part of life whether by connecting school children with hospices, integrating end-of-life discussions into workplaces, providing bereavement supports or creating opportunities for creative expression about grief and mortality. This can demystify the dying process and lead to more productive conversations about death and grief.

Third, this approach acknowledges diverse settings and cultural contexts for responding to death. It doesn’t tell us what death rituals or grief practices should be. Instead, it holds space for a variety of approaches and experiences.

Age-friendly compassionate communities

We propose that age-friendly initiatives could converge with the work of compassionate communities in their efforts to make a community a good place to to live, age and, ultimately, die. We envision death-friendly communities including some, or all, of the elements mentioned above. One of the benefits of death-friendly communities is that there isn’t a one-size-fits-all model; they can vary across jurisdictions, allowing each community to imagine and create their own approach to death-friendliness.

Those who are working to build age-friendly communities should reflect on how people prepare for death in their cities: Where do people go to die? Where and how do people grieve? To what extent, and in which ways, does a community prepare for death and bereavement?

If age-friendly initiatives contend with mortality, anticipate diverse end-of-life needs, and seek to understand how communities can indeed become more death-friendly, they could make even more of a difference.

That’s an idea worth exploring.

Complete Article ↪HERE↩!

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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↩!

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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

By

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↩!

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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↩!

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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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