End-of-life doulas prepare people for death in evolving role due to pandemic

By Christine McCarthy

In a field that is quickly growing but evolving due to the coronavirus pandemic, death doulas are providing comfort for the terminally ill and helping their family members grieve.

Similar to how a birth doula supports an expectant mother through the process of bringing a life into the world, an end-of-life doula – a trained, non-medical professional – guides a person through the final stages of life.

Mariah Riess, a certified end-of-life doula, often receives calls from new clients following terminal diagnoses.

Riess helps them navigate all aspects of death, from making legal, financial and funeral arrangements to deciding where and how they want to die.

“Death, in some ways, it’s the biggest event in our lives, and for many it’s the most disappointing to think about or have to experience,” Riess said from her Dover home. “There’s maybe a way to bring grace to this process and also information and understanding to this process of dying.”

Riess’s goal is to eliminate the stress and fear of one’s own mortality, providing comfort before and during their death and supporting their grieving loved ones after. Her work with each client can span days, months or years.

Riess believes the isolation many are experiencing during the pandemic has led clients to services like hers.

“I’ve seen quite an uptick in my practice, because I’m not sure there are places where people can talk about what’s going on with them when they’re facing the death of another or their own imminent demise, decline, diagnosis,” Riess said.

Terry and Melinda Sortwell began working with Riess last June. The Maine couple had been referred to Riess, who also provides nutrition and wellness services, as Terry struggled with digestive issues and gaining weight.

Terry, now 71, had been diagnosed with bile duct cancer in 2018 and had undergone extensive surgery and six months of chemotherapy before another cancer scare.

While further testing showed the cancer had not returned, his wife, Melinda, 66, experienced her own cancer scare. She, too, would receive good news, but considering their own mortality had been eye-opening.

“The fact is, we’re all going to die,” Terry said by Zoom. “We all think as human beings, ‘Oh, no. It’s not going to happen to me now. It’s not going to happen to me.’ Everything’s fine until it isn’t, and everything comes to a screeching stop. So you might as well plan for it.”

When the couple, married for 45 years this September, discovered Riess provided end-of-life services, they began working with her regularly, meeting virtually.

“It’s wonderful to think you can do it all yourself. But emotionally, there’s so much going on when you think you’re leaving your body, or you’re letting people down,” Melinda said. “The last thing you need to think about – or all the things you haven’t thought about – paperwork-wise and what are your desires and wants at the end of your life.”

Between Riess’s appointments, she asks her clients to complete assignments. For Terry, she instructed him to visit a hospice center so he can make his own plan for how he wants to spend his final days.

“[Riess’s] field and what she does, it takes all the worry away – a lot of the worry away,” Melinda said. “This is an important step and important support system for us and our family.”

Interest in end-of-life services has been increasing, even as doula work evolves due to the COVID-19 pandemic, according to Henry Fersko-Weiss, co-founder and executive director of the International End of Life Doula Association (INELDA), a non-profit that trains and certifies death doulas as private practitioners.

“I see people much more open to talking about death and dying,” Fersko-Weiss said by phone Wednesday. “The pandemic has made us all more conscious, aware and engaged with facing dying. That’s something that’s happening universally.”

Some death doulas have temporarily stopped providing services during the pandemic, while others, like Riess, have converted in-person meetings to online or telephone appointments.

While she already serves clients across the country remotely, Riess will soon resume appointments at her home with local clients, as she has now been fully vaccinated.

“Dying is a very intimate experience. So, I know it’s much richer and better if a doula can be physically present,” Fersko-Weiss said. “But it’s better to have a doula virtually than not to have a doula at all.”

While Terry undergoes scans and bloodwork every few months, he and his wife are stable and feeling well. Still, the couple feels their sessions with Riess are important, to prepare for their final days, whenever that may be.

“The point is to have these conversations when you’re feeling good,” Terry said, “so that you’re able to make decisions and talk to our children and think about things rather than try and solve these problems or make these decisions when you’re in a crisis mode.”

For Riess, her job is more of a calling – the most fulfilling role she could imagine.

“It’s such a privilege for me to be in the lives of the people that I’m in the lives of and to see the courage and the love,” Riess said. “And the opportunity for me to be involved with these families at the most personal, really profound time of life – I look forward to going to the end of my own life doing this.”

Complete Article HERE!

Behind Closed Doors

— ‘the Difficulty and the Beauty’ of Pandemic Hospice Work

Javier Urrutia, a home hospice music therapist, celebrating Josniel Castillo’s 11th birthday in Queens.

“I did not really understand when people would ask, ‘Why me and why my family?’” a hospice chaplain said. “Now I was asking the same questions.”

By James Estrin

This year was different.

The coronavirus pandemic dramatically changed Ms. Saoui’s work as a home hospice nurse in New York. Safety precautions created a physical distance between her and her patients and even cut some of her hospice colleagues off from their clients’ homes altogether last year. It deprived families and caretakers of ways to grieve together, and confronted hospice workers, however familiar with death, with a staggering scale of loss.

Through all the pressures, Ms. Saoui and other workers continued to provide solace and even moments of happiness to dying patients and their families.

“You sit down and you listen,” she said. “They express their fear, they express their emotions, and you guide them and tell them what to expect.” After a patient dies, she added, “I often want to hug the family members, but I cannot do that now.”

Instead, Ms. Saoui said, “I pray and do the best I can.”

More than half a million Americans have died from the coronavirus, and many have died in pain, isolated from their families. Ms. Saoui contrasted those conditions with what she called a good death: “peaceful, pain-free, at home and surrounded by their loved ones.”

While nurses have continued in-person home visits, some chaplain, social work and therapy sessions moved online because families preferred it. By August, most of that care switched back to in-person visits but with strict precautions, including wearing full P.P.E. at times and keeping six feet apart whenever possible.

Ms. Saoui examining Pedro Torres, while his wife, Gloria, and his son, Darron, look on.
Ms. Saoui examining Pedro Torres, while his wife, Gloria, and his son, Darron, look on.

Though a vast majority of Ms. Saoui’s patients in the last year did not have the coronavirus when they entered hospice, challenging restrictions have been placed on all patients and caregivers. Home hospice care can last for many months, and workers often develop close relationships with patients and their families.

But the pandemic has meant fewer occasions for families — and hospice workers — to mourn together in person at funerals or memorial services. For over a year, the size of those gatherings has been strictly limited by many states to try to stem the spread of the virus.

Nurse Hanane Saoui visits Diane Wilcox at her home in Queens.
Nurse Hanane Saoui visits Diane Wilcox at her home in Queens.Credit…

When hospice patients die, their caretakers often work through their own grief and loss in weekly staff meetings and gatherings with colleagues who shared the same client. These staff meetings are now online, but the loss of being able to hold each other and shed tears together has deeply affected hospice workers, said Melissa Baguzis, a social worker who specializes in pediatric cases. She has developed her own ways to handle the loss of her young patients.

“I take a moment, light a candle and read their favorite book or listen to their favorite song,” she said. “I have my own time for them. We do become connected with their families, but when I’m in their houses, that is their grief and I’m going to support them. I need to process my own loss outside of that.”

A nurse, Ozail Bennett, dressing in protective equipment before going to see a home hospice patient that has the coronavirus. Mr. Bennett also contracted the virus last April.
A nurse, Ozail Bennett, dressing in protective equipment before going to see a home hospice patient that has the coronavirus. Mr. Bennett also contracted the virus last April.

The hospice workers in the MJHS Health System, a nonprofit that covers New York and Nassau County, are comfortable around death in a way that many Americans are not. But the pandemic has put an extra weight on them and their patients, Ms. Baguzis said. “We all share in each other’s grief now more than ever,” she said.

The Rev. Christopher Sigamoney, an Episcopal priest who is a hospice chaplain, said he has tried to be there for his patients “even with their frustration, anger, hopelessness, depression and anxiety.”

Father Christopher Sigamoney talks with Joseph Lai.
Father Christopher Sigamoney talks with Joseph Lai.

He often told patients’ family members that it was “OK to be angry at God” over the loss of their loved one. But he said that the death of a beloved cousin from the coronavirus had changed his understanding of his work.

Father Sigamoney and his family were unable to be with his cousin, a retired doctor visiting from India, during the three days while she was on a ventilator in the hospital at the end of her life. He and a handful of relatives said “a few prayers” in the funeral home, he said, but they were unable to have a “proper burial” or ship the body home to India because of virus restrictions.

Father Christopher Sigamoney prays with patient Diane Wilcox at her home in Queens.
Father Christopher Sigamoney prays with patient Diane Wilcox at her home in Queens.

“I did not really understand when people would ask, ‘Why me and why my family?’” he said of the time before his cousin’s death. “Now I was asking the same questions. I said to God, ‘Now I’m angry at you, and I hope you can forgive me.’” Father Sigamoney said he was slowly recovering through prayer and helping his patients.

Last month, Josniel Castillo was hooked up to a battery of medical machines and monitors, surrounded by his parents and a multitude of stuffed animals, as Javier Urrutia, a music therapist, and Ms. Baguzis entered his cramped bedroom. Despite his declining medical condition because of a rare genetic disease, this was a happy day. It was Josniel’s 11th birthday.

Mr. Urrutia launched into “Las Mañanitas,” a traditional Mexican birthday song. Josniel’s mother and father, Yasiri Caraballo and Portirio Castillo, joined in. Ms. Caraballo wiped away tears. They were, she said, “tears of joy” because she had not expected her son would live to be 11.

She requested another tune, and played tambourine as Mr. Urrutia launched into “Que Bonita Es Esta Vida.” They sang the final chorus together, part of which can translate to:

Oh, this life is so beautiful

Though it hurts so much sometimes

And in spite of its sorrows

There’s always someone who loves us, someone who takes care of us.

Afterward, Mr. Urrutia said most people are “unaware of what’s happening behind closed doors, both the difficulty and the beauty.”

Melissa Baguzis, a MJHS hospice social worker, visiting Josniel Castillo on his 11th birthday.
Melissa Baguzis, a MJHS hospice social worker, visiting Josniel Castillo on his 11th birthday.

This year in countless homes, there has been “a lot of pain and suffering, it cannot be denied,” he said. But in hospice work, he said, “you also see all of the heroes out there doing the simple things of life, caring for each other. The husband taking care of his wife or the mother taking care of her son.”

“Dying is a part of life,” he added. “Only living things die.”

Complete Article HERE!

Does Marijuana Have A Place In Hospice?

Marijuana is used in hospice care to ease spiritual and existential suffering, with some studies showing an important therapeutic role for patients faced with the despair of a terminal illness.

BY Kate-Madonna Hindes

As Americans continue to age, hospices are exploring new ways to bring peace and calm to the often slow and painful process of end-of-life care. According to the CDC, in 2015, an estimated 1.4 million individuals on Medicare were patients in a hospice setting.

Quadrupling in size in the last 20 years, hospices are investing in creating a patient-centric approach that dismantles beliefs that hospices are cold, and unfeeling institutions. From massage to aromatherapy, some hospices are offering new additions to their programs including music and integrating family into meaningful experiences. While many hospices are focused on offering a thoughtful quality of care, many end-of-life-care specialists are also advocating for marijuana.

A MorseLife Hospice and Palliative Care study focused on advances in hospice care found changing attitudes on medical marijuana. They cited that, “87% of Americans support the use of medical marijuana as a treatment option for terminally ill patients, with nearly three in five Americans (58%) expressing strong support.”

The American Academy of Hospice and Palliative Medicine recently shared a video on how hospices can integrate medical marijuana into care, heralding more change in the market to accepting marijuana as a part of a patient’s care plan.

Pathways Home Health advocates for marijuana in hospice care, stating:

“Marijuana is used in the hospice care setting to ease spiritual and existential suffering, with some studies showing an important therapeutic role for patients faced with the despair of a terminal illness, as well as the loss of function that accompanies it. A mild euphoria or sense of well-being can ease a patient’s mind, body and spirit as they come to terms with their fate.”

Not Telling Your Doctor About Marijuana Use Can Hurt You

Stuck in political limbo

While some hospice programs are embracing medical cannabis, some are facing uncertainty about whether or not to allow medical marijuana, even when it’s legal inside their particular state. With an ever-expanding list of states that allow marijuana both medically and recreationally, hospices are taking an evidence-based, risk-management-forward approach to ensure they comply legally and ethically.

Changing attitudes are allowing for researchers to gain more insight and information regarding the role cannabis and CBD can both play in hospice and palliative care settings. Published in the Journal of Palliative Medicine, an October 2019 study focused on the responses of over 300 palliative care professionals from over 40 states on the use of medical cannabis. The study found “overwhelming support” for the use of medical cannabis in a hospice setting:

Regardless of legal status, hospice staff members were overwhelmingly in agreement that MC (medical cannabis) is appropriate for hospice patients to have access to and use.

Citing barriers such as legal status, clinical safety, and societal influence, the study believes opportunities exist to better support hospice providers and patients with education, research and policies that elevate the use of medical cannabis.

With new patients entering hospice every day and both clinicians and doctors looking to supplement old pain medicines with newer more effective treatments, marijuana will remain a top topic for years to come.

Complete Article HERE!

Every time one of my patients dies I buy a plant in their memory

Every time a patient passed away, I’d go to the garden centre and search either for a plant with their name or for a plant I thought represented them

By Katie Hodgkinson

When I started work as a doctor two years ago, I was living alone with one sad succulent and a pot of thorn-filled roses my boyfriend had given me.

I’d always liked plants, but I’d never been able to keep anything alive longer than a few weeks – in fact, my dad had been watering our fake one for years!

On my first rotation, I started on a combined cardiology and stroke ward, which, as you can imagine, sees quite a few patients with life-changing conditions. I’d made friends with one of the hospital palliative care sisters and she often came to help us with patients who were experiencing breathlessness, pain and agitation.

The first woman I met in a hospice, when told she’d have weeks to live, was insistent that the only thing she wanted to achieve in her remaining time was to ‘see the flowers bloom in spring’.

The staff bought her bulbs, and I’m told she lived long enough to see the first ones flower. It really struck me that after a lifetime in this world, the thing that mattered most to her was seeing the colours and life that comes with a new season – I’d never really thought of plants in that way before.

In my first few weeks, I started to develop relationships with some of our longer-term patients. There was one woman who I took blood from every morning and for whom I requested countless tests, scans and meetings.

Her family weren’t local, and we’d often share a giggle over the comings and goings of other women in her bay; I ended up being her most regular visitor.

One weekend I checked her blood results to see what we’d really been hoping not to see – she’d grown a nasty bacteria in her blood, and would need at least a further five weeks of antibiotics.

Sadly, we never managed to get on top of the infection. We gave her stronger drugs, blood transfusions and called her family in to be with her. She passed away peacefully, and that evening I went with the palliative care sister to a garden centre.

It was meant to just be an escape from long days on the ward and my first close patient death, but the centre had named all their plants – and when I saw one with her name on, it felt like some sort of sign. It was a bright and bold Calathea, with vibrant pink stripes that cheered me up instantly. I took it home with me.

Naturally in a busy city hospital, more of my patients died despite our best efforts. We brought in families, arranged a wedding for a terminally ill patient, and I even smuggled in someone’s new puppy inside my jacket (infection control approved, of course.)

I was 24 and seeing more death than most people see in a lifetime – but although it was horrible, it was also an honour to be a part of a team that could help these people have a good death.

No one wants to think of their life coming to an end, everyone wants to be comfortable and surrounded by the people they love, and it was so rewarding to be able to offer that.

Every time a patient passed away, I’d go to the garden centre and search either for a plant with their name or for a plant I thought represented them. I wanted to remember them.

I became better at looking after the plants in my flat. I developed a watering schedule, bought plant food, repotted them into pretty jars I’d found in shops, took them for showers if I thought they were dry – anything I could do to emulate the kind of care I was trying to give to my patients.

Most doctors have something they do to remember the people they’ve cared for – whether it’s lighting a candle, a quiet moment at the end of the day or debriefing with friends. I’ve heard of people planting trees – but I think individual plants might be one of the more unusual coping mechanisms!

When the pandemic hit, I was working in elective orthopaedics and my ward was the first to start accepting Covid-19 patients. Despite all the research, the treatment plans were often simple – oxygen, more oxygen, steroids and if needed, machines to take over breathing when patients became too tired.

We sent patients to ITU, and those who deteriorated we made comfortable. We took over the role of the families who weren’t allowed in, lest they put people in danger.

We held hands with patients while they passed away and we held up screens so their families could be there until the end. It was devastating knowing that pre-pandemic, we’d have had crowded side rooms filled with loved ones, and yet because of the risks they had me in full PPE, unable to even hold a hand without horrible sweaty gloves.

When I started my Covid-19 work I had about 15 plants and a watering can made out of an old sauce jar. Then garden centres closed in the first wave, but I ordered more plants online.

After eight months, I started to run out of room in my flat, and my friends suggested buying one plant per week rather than per patient. It didn’t feel right – not the level of acknowledgement I wanted for these people who had lived such full lives.

I started planting seeds, lighting, candles – anything I could to still feel like I was acknowledging the loss of so many people. I asked for help on Twitter, and people suggested planting trees, donating plants, getting an allotment – but none have felt quite right just yet. 

Thankfully I live alone, so the ever-expanding wave of greenery wasn’t too annoying – but I have started letting my fiance choose where we put some of them! It’s lovely to be surrounded by so much new life and I get so excited whenever I see a leaf start to unfurl – I am reminded every time to appreciate it by the woman who wanted to see the flowers bloom in spring. I like to think she’d be just as thrilled.

Now I work in a different hospital, and thankfully fewer people are dying. I’ve been able to propagate my existing plants to grow smaller baby plants for my friends.

I still have a plant for every patient who passed away while I was their doctor; it looks like I live in a jungle, with more than 60 plants, but I’m starting to prune and take cuttings so that other people can share the joy.

For some of my paediatric patients, I’ve decorated pots with stickers of their favourite things – Peppa Pig, octopi, even one covered in fingerpaint.

The time I spend looking after my plants has become the time when I can reflect on everything that’s happened and all the people I’ve cared for.

Sometimes it’s a sad experience, and sometimes it’s a more joyful process where I can think of those that got to go home.

I think of all the things I have yet to learn, how far I’ve come, and how many more patients I will get to meet. I think I’ll always dedicate a plant to a lost patient; I just might need to move to somewhere with a garden.

Complete Article HERE!

The Costly, Painful, Lonely Burden of Care

Health care in the U.S. relies on an “invisible army” of caregivers — mostly women. For many, stunted careers, lost earnings and exhaustion are part of the fallout.

By Mara Altman

— Kate Washington, the author of “Already Toast: Caregiving and Burnout in America”


In 2015, Kate Washington’s world changed. Her husband, Brad Buchanan, was late for family dinner. She found him in the bathroom, coughing up blood — a lot of it. She handed him a bucket and asked the neighbor to watch their two young daughters while she drove him to the emergency room.

Doctors found that a tumor had ruptured in one of his lungs and he urgently needed chemo. As her husband became critically ill, Ms. Washington, a freelance writer, was thrust into the role of nurse.

After Mr. Buchanan’s first round of chemo, the tumor shrank too quickly, causing his lung to collapse and then fill with thick, toxic fluid that put him at high risk for infection. Before he could continue treatment for cancer, he was sent home to recuperate.

Ms. Washington found herself performing high-level nursing tasks, like administering antibiotics three times a day through a PICC line — a thin tube that leads from veins in the arm to the veins near the heart. “My hands were shaking,” she said as she remembered apprehensively pushing in the drugs for the first time and feeling the weight of keeping her husband alive.

But that weight would only become heavier when Mr. Buchanan had a stem cell transplant that left him with graft-versus-host disease, a condition that occurs when donated cells attack the body.

After spending four months in the hospital, becoming temporarily blind and unable to walk, eat, dress or use the toilet on his own, he was given his discharge papers. A doctor told Ms. Washington that her husband would need 24-hour care and “could not be left alone for even a moment.” When she explained that she had two children who also had needs, he said, “Well, usually family steps in, and it works out fine.”

Ms. Washington felt the burden of responsibility, but also the sting: The U.S. health care system relies on and takes for granted the “invisible army” of people — mostly women — who keep the system functioning by performing home care for the many people who are “too well for the hospital” but “too sick for home,” as well as for those on end-of-life care.

In 2017, AARP found that about 41 million family caregivers in America perform roughly $470 billion worth of unpaid labor a year. Since then, the number of caregivers has increased to 53 million, meaning that more than one out of five Americans are caregivers, according to AARP’s latest report.

Depending on the analysis, between 61 and 75 percent of caregivers are women, and they tend to do more personal care tasks like helping patients bathe and use the toilet than their male counterparts, who are more likely to oversee finances and arrangement of care.

Female caregivers put in more hours — 22 to men’s 17 — and they are also more likely to stand by their partner through a serious illness. According to a study in the journal Cancer, women living with brain tumors or multiple sclerosis were seven times as likely to be abandoned by their spouses as men with similar diseases.

Many people who take on caregiving roles experience negative health impacts, but women are especially at risk of the fallout from caregiver stress. Female caregivers are also 2.5 times more likely to live in poverty as non-caregivers, with many leaving the work force to do care work. A 2011 study found that women who left their jobs to care for a parent lost an average of $324,000 in wages and benefits over their lifetimes.

Ms. Washington was able to dip into savings and a recent inheritance to help pay for supplemental in-home care, but it was still a struggle, causing stress, resentment and lost income.

Her book, “Already Toast: Caregiving and Burnout in America,” published by Beacon Press and on shelves this week, details the day-to-day challenges of caring for a partner with severe illness, but it also examines how the health care system must change to better support caregivers. “If society wants us to keep caring for others,” she writes, “it’s going to have to show a little more care for us.”

In Her Words spoke with Ms. Washington over phone and email. The conversation has been edited for length and clarity.

If we go with the metaphor that cancer is a battle, then you call yourself “collateral damage.” Explain.

I was compelled to enter this new life where the center of it was caring for someone else, and even though I love that person very much, it was a hard loss. It was hard to have my life put on hold. Everything kind of slipped away.

As you became “collateral damage,” what was lost?

I lost a sense of who I was. I was going to pick up a prescription for myself, the only prescription I had when my husband was sick, and the pharmacist asked for my date of birth, and I gave his date of birth. I was so used to picking up things for him, I spaced on the fact that I also had needs. For a few years, I essentially stopped having a professional life. There was this feeling of erasure — that my needs and desires were no longer important.

What was the fallout of not feeling seen for so long?

I got angry. That sense of being unseen became literal because Brad had lost his vision, which is not to blame him for that at all, but it made a metaphor an actual, concrete thing. The things I was doing for him were being taken for granted or were invisible to him. That started to create resentment. I wanted to be acknowledged for how much I was giving up of the life I normally would have been leading.

What could have helped you feel acknowledged?

A culture shift to valuing care isn’t really a quick fix exactly, but that would be nice. From the medical establishment? Not taking at-home care for granted.

There is also a longstanding gender stereotype that women are the caring sex. There’s a lot of pressure on women to conform to and stick with these roles and to not raise their voices about all the difficulties they face. Just because women are expected to do the caring, doesn’t mean it comes easier to them.

You express in your book that a disservice to caregivers is equally a disservice to those receiving the care. Can you explain this idea?

If there is too much responsibility on caregivers, the patient can suffer. Burnout can undermine the sense of empathy, the sense of love and the sense of providing good care.

This can impact practical outcomes, like how quickly the person can recover, but it can also be damaging for the relationship between caregiver and the recipient of care, which is less quantifiable, but also hard to contend with.

There was a powerful quote in your book from Evelyn Nakano Glenn’s “Forced to Care.” She wrote that our society views family caregiving as both “priceless and worthless.”

There is a narrative that the caregiving work we do is invaluable and the gift of caring is its own reward, but the flip side of something being priceless is that you paradoxically strip it of all its value. It’s so valuable that we can’t put a monetary price on it, which then takes away the economic worth.

People talk about how it’s the most important job in the world, taking care of our children or taking care of our vulnerable elders, and yet those are some of the worst paid jobs. How much is a quarterback paid versus someone who is doing care for a vulnerable elderly person?

How did care work become so undervalued?

The historical roots are complex, but as Evelyn Glenn puts it in “Forced to Care,” Western culture has long framed care work done by women as a moral duty or obligation, rather than an economic activity.

Whereas in preindustrial times, women’s domestic work was understood to contribute to a household financially, the Victorian era saw a gendered split between the domestic sphere and the economically productive public sphere. Family caregiving fell into the realm of women’s work and — like child care and other domestic labor — became economically invisible and not counted in GDP. In turn, the association between care and women’s free or compelled labor has produced stigma and low wages for professional care work — a vicious circle of devaluing.

You write that taking on the role of unpaid caregiver, a role that often isn’t a choice, can have generational impacts. Explain.

If your earnings are lower than they would normally be because you’re busy caring for a family member, and you can’t save and pay into social security, it can lock whole families into a cycle of lower wealth and economic instability.

How can people best help their caregiver friends and neighbors?

There is a reason that taking people a meal is a classic, because it is super helpful. If you do that, always bring disposable containers so that the person does not have to return them. Offering to help with errands or with child care is great, and if the situation permits, offer to sit with and stay connected to the person who is ill. When Brad could be more in touch with his community, it eased some of the pressure on me.

And what should someone not do?

Don’t tell someone to stay positive. For me, there was no staying about it, because I didn’t feel positive to start with. It brought up this feeling: My time isn’t my own, but surely my emotions can be.

Complete Article HERE!

Should Everyone Have An End-Of-Life Doula?

By Anna Lyons and Louise Winter

On a crisp January morning, we carried Camilla’s purple coffin, covered in blooming yellow flowers, into the Art Deco chapel of a London crematorium as Leonard Cohen sang “Dance Me to the End of Love”. Her family and friends watched from their homes in New York City via a livestream link. They’d recorded voice notes in advance, which we’d uploaded to the music system. Camilla’s coffin rested on the marble catafalque, as their pre-recorded words of love, gratitude and admiration were played. As the curtains closed around her coffin, a recording of Camilla’s niece reading “Phenomenal Woman” by Maya Angelou echoed around the empty crematorium chapel.

Camilla lived a creative, vibrant and full life, surrounded by a wide circle of like-minded people. She died alone on a Covid-19 ward in a central London hospital. In the saddest and loneliest of circumstances, Camilla’s family and friends found a way to come together to say goodbye to the person who had been a huge force in all their lives.an end-of-life doula and a progressive funeral director. Anna supports people who are living with life-limiting illness, their family and friends, helping people to live as good a life as possible right up until the very end. In her doula role, Anna also works with people who are grieving. Louise supports people to put together funerals that honour, heal and inspire. Our joint mission is to normalise death and dying as part of life and living. Over the last year, our work, both together and separately, has changed immeasurably.

Many of us won’t have any idea that, worldwide, in an average year, around 151,600 people die every single day. That’s almost two people every second. Annually, in the UK alone, more than 500,000 people die. However, the Covid-19 pandemic has meant that death and dying have infiltrated and impacted our lives in ways we’ve never experienced before. As a society, we’ve been faced with the shock of horrifying death tolls on a daily basis. We’ve been unable to be at the hospital deathbed of someone we love, or if we were allowed, we’ve had to say goodbye through multiple layers of PPE. Some of us have attended restricted funerals, unable to engage with the rituals and traditions associated with loss

Where do we turn when someone dies? In normal times, we’d seek solace in the presence of others, we’d allow ourselves to be supported by the people around us. They would bear witness to our losses, keeping us close and secure in the knowledge they were near. Devastatingly, Covid-19 has changed all of this. We couldn’t reach out. We couldn’t physically be there. We couldn’t hold someone’s hand as they lay dying in hospital or give a friend or colleague a much-needed hug after a funeral service. Human touch and connection were replaced by a phone, an iPad or a laptop screen – a cold, hard, reflective surface with its ability to “connect” reliant on an intermittent internet connection. With the absence of human connection, of closeness, of the comforting arms of someone we love, how and where did we find consolation and care? How could we find ways to come together while staying apart?

We are privileged that our jobs have allowed us to witness a myriad of inspiring and beautiful ways people have found to do just that. The humanity of NHS staff has astounded us time and again. One nurse stayed with a young woman who was dying alone in hospital long after his shift was over, reading aloud the text messages she was receiving from family and friends. We saw a frightened young woman transferred from the hospital where she was receiving cancer treatment to hospice so she could be surrounded by those who loved her at the end. Her family played her favourite music and soothed her with stories from her childhood in a peaceful room overlooking the hospice gardens. And a newly married man, with his entire life ahead of him, died unexpectedly in a tragic accident. Hospital staff, despite restrictive regulations, rushed to find extra PPE so his new wife could be there to kiss him for the final time.

We watched a fractured community come together to share flowers from their gardens when florists were closed and funeral flowers were unavailable. A simple request via the neighbourhood WhatsApp group resulted in a widow’s doorstep overflowing with blooms for her partner’s coffin. We witnessed how the rules of social distancing have necessitated some radical creative thinking and we worked with a celebrant who designed a long multi-coloured ribbon that everyone at the funeral could touch and hold to feel connected, while still remaining physically distant.

We were asked to help facilitate a worldwide Zoom by a group of friends when one of them died by suicide. They wore his favourite colours, shared photos of the fun they’d had together and raised a glass of champagne in his honour. Separated by a virus, united in grief, connected via technology.

Who would have thought just 18 months ago that today we’d be watching the people we love dying over FaceTime and attending their funerals via video link? Yet the unimaginable has become our everyday reality. And it’s within the reality of the unimaginable that we’ve seen the infinite beauty and endless possibility of the human spirit shine. We’ve learned we can bear the unimaginable. We are bearing the unimaginable. Through kindness, creativity and determination, we’ve found hope in our heartbreak, discovered that our vulnerabilities are also our strengths, and realised that our resilience is born from finding fragments of optimism and wonder in the most unlikely of places

Now, the promise of spring sits in the cool end-of-winter air. Gone are the dark afternoons; the frost and biting wind are slowly disappearing, allowing these March days to tenderly unfurl, reaching expectantly into the longer evening light. They bring with them a degree of anticipation, hope and new life. There is life. There is hope. There’s always hope.

‘We All Know How This Ends: Lessons about Life and Living from Working with Death and Dying’ by Anna Lyons and Louise Winter is available now.

Complete Article HERE!

I want my dying patients to have good deaths. I grieve for all those who died alone this year.

By Roshni Kakaiya

February marked one year since I last saw somebody die in our hospital surrounded by their loved ones. To give you some context, I am a physician in training in the South Bay — a community that was hit particularly hard by the novel coronavirus that can lead to COVID-19. As a family medicine resident, I take care of patients in our clinic, admit them to the hospital, care for them in the ICU, and even deliver their babies. As such, I am no stranger to the never-ending cycle of birth, illness and death, especially during the pandemic.

Yet I can tell you that a few moments of clarity shine bright against the haze of this past year. This memory of my patient’s death stands out so strikingly to me because of the comparison with what came down just a few days later, when our lockdown began and our hospital policies changed.

One year later, I can close my eyes and still picture this patient and her family. The patient was in her 80s and the matriarch of her family. The day before she died, she had woken up with some energy and was able to speak with her daughters who were at bedside most of the day. We see this sometimes in the days before people pass — they get a burst of vivaciousness that sometimes fools us into thinking they are doing better.

The day my patient died, her daughters were holding hands and all touching some part of their mother, grieving together and comforting each other. Their husbands and children were somberly in attendance, intermittently wiping away tears. There must have been at least nine people in that room, something I can barely imagine now with our limited visitor policy. The daughters sang the patient’s favorite hymn, and they were even able to play part of a sermon their mother loved. Every time I walked into the room to check on this patient, I immediately felt the warmth, the love and the comfort the family was bringing to each other. This was a good death. This was a death filled with love, and touch, and warmth, and solidarity, and connection, and presentness. This was a death the family could remember and discuss as needed as its members mourned, which, as we have come to know, is crucial to processing such a significant event. This was a natural death of a woman in her 80s who had lived a long and wonderful life.

As a physician in training, it initially felt counterintuitive how much time we spend thinking and talking about death with our patients in both the hospital and clinic setting. However, I’ve come to realize that some of my most important work comes in the form of advocating for my patients to have a good death. A death they would have wanted, maybe even that they could have chosen for themselves — a peaceful death or a death with a fighting spirit up until the very end.

As I see our patients dying mostly alone in our hospital, with only family being able to visit, one or two at a time in the hours before a person is about to die, or looking at their loved ones through the window as they are intubated and sedated, I grieve for our community. I grieve for those who have had so many good deaths taken away from them — and had them instead replaced with a screen from which to watch their loved ones slowly dwindle away. I grieve the good death, the death that comes with a natural closure. Yet I am hopeful that one day we will return to this good death — the death that is filled with touching, hugging, crying, laughing, and snot flying everywhere. One day, togetherness will not be the vector for more deaths and more grieving. It will be the balm that heals us from the most difficult year of our lives. This is the death I wish unto you and your families in the future: the good death, a death worth dying for.

Complete Article HERE!