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!

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!

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!

On life, death and dying

Theresa Hamilton plays tic tac toe on a window with a senior in Mt. Cartier Court as the pandemic limited in-person visitors into senior care homes.

By

Theresa Hamilton wants to help people die better.

“I find that I am a magnet to it and I really care and I want to talk to people about sad, happy, absolutely everything,” she said. “When you keep death natural you get to see the beauty in it.”

Hamilton works as the executive director for the Revelstoke Hospice Society and as a death care practitioner, also known as a death doula. She hosts monthly death cafes where people can ask questions and talk freely about dying.

“I want to teach as many people as I possibly can what they have within themselves, and I have seen how, when you do a lot of the work around creating quality of life for people before the end of life, or creating rituals or ceremonies or being able to create a legacy project with somebody before they have died, that always ends up helping the grieving process,” she said.

Hamilton and her partner bought a home in Revelstoke in 2016, but had spent the previous five winters in the city, going back and fourth between here and Grand Bend, Ont.

For five years she worked at the La Baguette at RMR.

“I was immersed in everyone riding and loving the ski hill. I think just being a happy face in people’s daily lives just really kind of launched me (in the community),” she said.

But eventually she felt she had to put her education to use.

Hamilton originally went to university intending to be a social worker. There she discovered thanatology, the scientific study of death and losses.

She also completed Indigenous Studies, which changed her views on dying and made her realize how much she had to unlearn.

“It is a more holistic method than we are used to,” she said.

Hamilton has been volunteering for hospice societies in every town she’s lived in.

“I really admired how small and mighty they were,” she said.

Revelstoke was no different, and with the previous director stepping out, Hamilton was tapped to take over. Though she is now paid by the society, she said she probably volunteers more now than she did before.

Hamilton also helps with Community Connection’s Food Recovery program, the Revelstoke Snowboard club and the Revelstoke Performing Arts Centre, when they are operating in-person.

“I just think that volunteering is your daily vote for democracy,” she said. “I am creating the world that I want to live in.”

Hamilton is also an activist and she supports everyone’s projects.

“Social justice anything is always on my radar because I think we have safety in numbers,” she said.

With all these causes under her belt, she often gets labelled a “Mother Theresa” type, which is something she brushes off.

“I don’t see it as being amazing the way my friends tell me it is amazing, it’s just like, ‘Yeah, but, that’s life,’” she said.

However, the namesake she is happy to claim is her grandmother Theresa, who she never met, but who also did death care work through the Catholic church.

“It’s really nice to know that I am fulfilling my ancestors roll,” Hamilton said.

Complete Article HERE!

Embracing the Role of the Death Doula for Your Hospice Patients

Meeting people at the end

by Daniel Morris

Many people know about the role midwives and doulas play in managing pregnancy and childbirth, but few are familiar with the concept of the death midwife, also known as a death doula. This person helps patients and their loved ones cope during the end-of-life phase. Life and death are both natural processes, but many people struggle to come to terms with the emotional difficulties of dying. Your homecare agency can enhance emotional support during this time by hiring a death doula to accompany your services.

Let’s go over the role of death doulas and answer some questions about how they operate and how they can deepen your homecare agency’s services during the end-of-life process.

What is a death doula?

A death doula helps manage the transition between life and death. During this time, a doula may act as a companion to the dying patient or as an advocate for the family’s needs. By nature, this role is holistic and highly personal. It depends a great deal
on what extra support the patient and family may require.

Death doulas are becoming more popular because they are filling a need created by the way families and communities are currently structured. In the past, communities were closer-knit and family members were nearby; today, that may not be the case. Death doulas can play a key role in bridging the gaps that can arise in companionship and end-of-life care, especially when a patient chooses to die at home.

What services does a death doula provide the dying patient?

A death doula will work to comfort the dying patient and coordinate legacy activities. Some common activities may include:

  • Listening actively, leading light conversation, answering a patient’s questions, helping them find peace
  • Providing comfort through reading and companionship
  • Using anxiety-reducing techniques such as guided visualization, meditation and massage
  • Refreshing their room with pillows, candles or beloved objects
  • Suggesting and supporting legacy projects, gifts and/or letters
  • Discussing end-of-life wishes

What services does a death doula provide the family?

A death doula works closely with family members to meet their needs during this difficult time. Many family members describe a death doula as a calming, supportive presence in the process. A death doula can provide a variety of support options, including:

  • Identifying the needs/preferences of the family
  • Providing respite care
  • Discussing end-of-life planning, such as advanced care directives, vigils, after-death body care, funeral planning and memorial services
  • Planning last hours of life, including goodbyes and favorite activities
  • Suggesting and supporting legacy projects, gifts and/or letters
  • Facilitating difficult conversations and advocating for the family’s rights
  • Coordinating domestic care, such as housekeeping, lawn care or pet care
  • “Just being there” to provide companionship and support

In addition to the acts of care listed above, a death doula can be beneficial to the patient and family in other ways. Often a professional caregiver isn’t there 24/7, so there are long breaks when a patient may be alone. Death doulas can cover some of these hours, providing comfort in those final weeks of life.

Death doulas may also provide emotional and spiritual support that is missing from the traditional hospice care experience. With their mere presence, a death doula can provide a shoulder for a family to lean on.

Why should home hospice providers partner with a death doula?

Your home health and hospice agency may need extra support during the end-of-life phase, as the act of dying can be a time for all hands on deck to ensure patient and family comfort. In this case, you should reach out to a death doula. They will listen to both your agency’s needs and the patient’s needs to create an end-of-life care plan that works for you and the patient. It’s important to find a doula that you and the family feel a certain chemistry with, as this person will be involved while care services are performed.

Home hospice providers who have experience working with death doulas find that it’s great for enhancing the end-of-life experience. A death doula will coordinate with your agency’s hospice nurses and workers to fill care gaps and provide more emotionally oriented activities for the family and patient. They should work closely with family and professional caregivers, taking the time to understand the caregivers involved and coordinate with them to provide end-of-life care. It’s also common for doulas to get a clear sense of caregiver gaps, such as respite care. You should work together in order to make sure that their services complement those your agency already provides. The overarching goal is for each patient to receive an enriching end-of-life experience.

Are death doulas certified?

It’s important to note that a death doula is not a medical professional and doesn’t have a medical role in a patient’s care. For example, they can’t prescribe pain medication or take vitals. Instead, a death doula provides emotional and spiritual support.

There’s currently no credentialing body for death doulas. However, all death doulas should have appropriate training. Training courses are offered by accredited organizations such as the International End of Life Doula Association (INELDA), the Lifespan Doula Association and the University of Vermont. When you search for a doula, make sure they have the required training.

Also note that death doulas aren’t typically affiliated with any particular religion. In fact, doula services are often designed to be universal. Whether your patient adheres to a specific religious tradition or not, a death doula can still be appropriate.

How do you find a death doula?

You can start your search for a death doula on the INELDA website, which lists trained death doulas by locale. I also recommend talking to friends and family about their experiences with death doulas. Ask your patients and their families if this is a service they would benefit from.

While being a death doula is a service to the dying patient, it is not typically a volunteer position; however, you may also be able to work with an organization that provides volunteer death doulas to work at some care facilities. Some death doulas will charge rates by the day or by the hour, or they may charge an overall fixed price. If you are bringing a death doula onto your staff, you should discuss pricing to understand how the service will affect the patient’s final bill.

Death doulas play a comforting role during the dying process. Consider hiring a death doula for your homecare agency to get the emotional support your patients need during their transition from life to death.

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