Embracing death

— End-of-life doulas growing in popularity

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

Ashley Scott wants people to feel safe, comfortable

By Kara Mason

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Evolving care

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

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

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

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

“It shook us to our core,” she said.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The movement

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

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

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

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

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

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

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

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

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

Complete Article HERE!

Aiding Her Dying Husband

— A Geriatrician Learns the Emotional and Physical Toll of Caregiving

Dr. Rebecca Elon’s life took an unexpected turn in 2013 when she noticed personality changes and judgment lapses in her husband, Dr. William Henry Adler III. He was eventually diagnosed with frontotemporal dementia with motor neuron disease and died in February.

By Judith Graham

The loss of a husband. The death of a sister. Taking in an elderly mother with dementia.

This has been a year like none other for Dr. Rebecca Elon, who has dedicated her professional life to helping older adults.

It’s taught her what families go through when caring for someone with serious illness as nothing has before. “Reading about caregiving of this kind was one thing. Experiencing it was entirely different,” she told me.

Were it not for the challenges she’s faced during the coronavirus pandemic, Elon might not have learned firsthand how exhausting end-of-life care can be, physically and emotionally — something she understood only abstractly previously as a geriatrician.

And she might not have been struck by what she called the deepest lesson of this pandemic: that caregiving is a manifestation of love and that love means being present with someone even when suffering seems overwhelming.

All these experiences have been “a gift, in a way: They’ve truly changed me,” said Elon, 66, a part-time associate professor at Johns Hopkins University School of Medicine and an adjunct associate professor at the University of Maryland School of Medicine.

Elon’s uniquely rich perspective on the pandemic is informed by her multiple roles: family caregiver, geriatrician and policy expert specializing in long-term care. “I don’t think we, as a nation, are going to make needed improvements [in long-term care] until we take responsibility for our aging mothers and fathers — and do so with love and respect,” she told me.

Elon has been acutely aware of prejudice against older adults — and determined to overcome it — since she first expressed interest in geriatrics in the late 1970s. “Why in the world would you want to do that?” she recalled being asked by a department chair at Baylor College of Medicine, where she was a medical student. “What can you possibly do for those [old] people?”

Elon ignored the scorn and became the first geriatrics fellow at Baylor, in Houston, in 1984. She cherished the elderly aunts and uncles she had visited every year during her childhood and was eager to focus on this new specialty, which was just being established in the U.S. “She’s an extraordinary advocate for elders and families,” said Dr. Kris Kuhn, a retired geriatrician and longtime friend.

In 2007, Elon was named geriatrician of the year by the American Geriatrics Society.

Her life took an unexpected turn in 2013 when she started noticing personality changes and judgment lapses in her husband, Dr. William Henry Adler III, former chief of clinical immunology research at the National Institute on Aging, part of the federal National Institutes of Health. Proud and stubborn, he refused to seek medical attention for several years.

Eventually, however, Adler’s decline accelerated and in 2017 a neurologist diagnosed frontotemporal dementia with motor neuron disease, an immobilizing condition. Two years later, Adler could barely swallow or speak and had lost the ability to climb down the stairs in their Severna Park, Maryland, house. “He became a prisoner in our upstairs bedroom,” Elon said.

By then, Elon had cut back on work significantly and hired a home health aide to come in several days a week.

In January 2020, Elon enrolled Adler in hospice and began arranging to move him to a nearby assisted living center. Then, the pandemic hit. Hospice staffers stopped coming. The home health aide quit. The assisted living center went on lockdown. Not visiting Adler wasn’t imaginable, so Elon kept him at home, remaining responsible for his care.

“I lost 20 pounds in four months,” she told me. “It was incredibly demanding work, caring for him.”

Meanwhile, another crisis was brewing. In Kankakee, Illinois, Elon’s sister, Melissa Davis, was dying of esophageal cancer and no longer able to care for their mother, Betty Davis, 96. The two had lived together for more than a decade and Davis, who has dementia, required significant assistance.

Dr. Rebecca Elon’s sister Melissa Davis (right) was the primary caretaker for their mother, Betty Davis, for the past 10 years. But new living arrangements had to be made for their mother when Melissa Davis died of esophageal cancer in May 2020.

Elon sprang into action. She and two other sisters moved their mother to an assisted living facility in Kankakee while Elon decided to relocate a few hours away, at a continuing care retirement community in Milwaukee, where she’d spent her childhood. “It was time to leave the East Coast behind and be closer to family,” she said.

By the end of May, Elon and her husband were settled in a two-bedroom apartment in Milwaukee with a balcony looking out over Lake Michigan. The facility has a restaurant downstairs that delivered meals, a concierge service, a helpful hospice agency in the area and other amenities that relieved Elon’s isolation.

“I finally had help,” she told me. “It was like night and day.”

Previously bedbound, Adler would transfer to a chair with the help of a lift (one couldn’t be installed in their Maryland home) and look contentedly out the window at paragliders and boats sailing by.

“In medicine, we often look at people who are profoundly impaired and ask, ‘What kind of quality of life is that?’” Elon said. “But even though Bill was so profoundly impaired, he still had a strong will to live and retained the capacity for joy and interaction.” If she hadn’t been by his side day and night, Elon said, she might not have appreciated this.

Meanwhile, her mother moved to an assisted living center outside Milwaukee to be nearer to Elon and other family members. But things didn’t go well. The facility was on lockdown most of the time and staff members weren’t especially attentive. Concerned about her mother’s well-being, Elon took her out of the facility and brought her to her apartment in late December.

For two months, she tended to her husband’s and mother’s needs. In mid-February, Adler, then 81, took a sharp turn for the worse. Unable to speak, his face set in a grimace, he pounded the bed with his hands, breathing heavily. With hospice workers’ help, Elon began administering morphine to ease his pain and agitation.

“I thought, ‘Oh, my God, is this what we ask families to deal with?’” she said. Though she had been a hospice medical director, “that didn’t prepare me for the emotional exhaustion and the ambivalence of giving morphine to my husband.”

Elon’s mother was distraught when Adler died 10 days later, asking repeatedly what had happened to him and weeping when she was told. At some point, Elon realized her mother was also grieving all the losses she had endured over the past year: the loss of her home and friends in Kankakee; the loss of Melissa, who’d died in May; and the loss of her independence.

That, too, was a revelation made possible by being with her every day. “The dogma with people with dementia is you just stop talking about death because they can’t process it,” Elon said. “But I think that if you repeat what’s happened over and over and you put it in context and you give them time, they can grieve and start to recover.”

“Mom is doing so much better with Rebecca,” said Deborah Bliss, 69, Elon’s older sister, who lives in Plano, Texas, and who believes there are benefits for her sister as well. “I think having [Mom] there after Bill died, having someone else to care for, has been a good distraction.”

And so, for Elon, as for so many families across the country, a new chapter has begun, born out of harsh necessities. The days pass relatively calmly, as Elon works and she and her mother spend time together.

“Mom will look out at the lake and say, ‘Oh, my goodness, these colors are so beautiful,’” Elon said. “When I cook, she’ll tell me, ‘It’s so nice to have a meal with you.’ When she goes to bed at night, she’ll say, ‘Oh, this bed feels so wonderful.’ She’s happy on a moment-to-moment basis. And I’m very thankful she’s with me.”

Complete Article HERE!

Understanding family members’ grief for a living loved one

Study looks at factors that influence pre-loss grief

By Emily Caldwell

The symptoms of grief people feel for a loved one facing a life-limiting illness fluctuate over time, a new study found – suggesting that individuals can adjust to their emotional pain, but also revealing factors that can make pre-loss grief more severe.

Researchers examined changes in the severity of pre-loss grief symptoms in people whose family members had either advanced cancer or dementia.

The study is the first to document pre-loss grief at two points in time, and found that about 70% of participants’ symptoms decreased over a month. However, compared to initial symptoms reported by participants, women and those with a heavy caregiving burden were more likely to be experiencing more intense symptoms a month later.

The results also showed that family members of patients with dementia, for which there is no long-term treatment or cure, were significantly more likely than family members of cancer patients to have severe pre-loss grief – but that some people anticipating losing a loved one to cancer also had unexpectedly high levels of pre-loss grief.

Participants reported similar symptoms no matter how long they had been living with the knowledge that their loved one had a life-limiting illness – another surprising finding for Jonathan Singer, lead author of the study and a clinical psychology intern in psychiatry and behavioral health at The Ohio State University.

“People in this study had pre-loss grief at a very high rate after many years. That was shocking, because one might think over time it would get easier. But with Alzheimer’s disease, it can get harder, and with cancer there could be a similar trajectory, starting with hope at the beginning but feeling worse over time,” Singer said.

“What’s happening with these family members still struggling – is it the caregiver burden, is it that they’ve lost their identity, is it that they’re not engaging in pleasurable activities anymore? That’s what we want to hit on next.”

The study was published recently in the Journal of Health Psychology.

Though pre-loss grief is not a clinical diagnosis, prolonged grief disorder in people mourning the death of a loved one has been added to the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) released this year. Clinical criteria for a diagnosis include preoccupation with thoughts or memories of the lost family member combined with a number of symptoms such as intense emotional pain, a sense of disbelief and difficulty moving on with life.

Adding prolonged grief disorder to the DSM-5 represents progress, Singer said – but the relatively new area of research on pre-loss grief demonstrates a need to consider therapies that can ease symptoms of people who are grieving for an ill loved one who is still alive.

“There’s a lot of research on anticipatory grief, which involves worry about the future. But pre-loss grief in that moment is pretty ignored,” said Singer, who treats patients at Ohio State Wexner Medical Center.

“With medical advances, people are going to be living longer with life-limiting illnesses, so there will be a bigger and bigger issue with grief before the person passes away. Symptoms of pre-loss grief can predict long-term negative outcomes after a loved one’s death, so this is a good intervention target that we should figure out now.”

Though it’s too soon to tell what types of therapies might work best, Singer noted two approaches that hold promise: behavioral activation that encourages people to engage in pleasurable activities, and meaning-centered psychotherapy designed to enhance spiritual well-being and quality of life.

For this study, the researchers recruited family members of patients with advanced cancer (100) and dementia (38) who completed questionnaires assessing their symptoms of grief, depression, post-traumatic stress and caregiving burden. Of those, 33 family members of cancer patients and 28 family members of dementia patients completed a follow-up assessment one month later.

The initial assessment showed that participants were experiencing substantial pre-loss grief. Women and participants with a higher caregiver burden were the most likely to be experiencing more intense grief one month later.

Overall, 69% of participants reported decreases in symptoms a month after the first assessment – a phenomenon that Singer plans to explore in follow-up studies.

There were no differences in pre-loss grief at baseline or one month later based on the nature of the life-limiting illness. But in a secondary analysis of the severity of reported symptoms, the researchers found that 10.5% of family members of dementia patients and 2% of family members of cancer patients met the criteria for a diagnosis of prolonged-grief disorder.

“We expected to see this severity in family members of patients with dementia,” Singer said. “But there is a lot of hope in the cancer community, so it was a big surprise to see so much pre-loss grief in family members of cancer patients.”

Singer led a recent study designed to help pave the way to a better understanding of how preparing for the death of a family member may prevent mental health problems for their survivors. He is currently involved in a study of a longer-term trajectory of pre-loss grief and is interested in investigating its biological effects.

Complete Article HERE!

How the light gets in

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When palliative care doctor Rachel Clarke looked back over her notes typed hastily pre-dawn in the midst of a global pandemic, she expected to find only darkness—an unrelenting stream of death and despair. To her surprise, her insomniac’s diary was “illuminated by pinpricks of light”. “People began to organise, street by street, village by village, to make sure that their most vulnerable neighbours…were safe and fed and kept from harm”, writes Clarke. Rainbows appeared in windows up and down the country in support of key workers, volunteers set to work sewing masks and manufacturing visors, and a retired British Army officer approaching his 100th birthday united a divided nation by walking laps of his garden to raise money for the National Health Service (NHS).

Clarke, who embarked on a career as a current affairs journalist before beginning medical training, has since punctuated her medical career with writing—from Your Life in My Hands, charting her experiences as a newly qualified doctor, to Dear Life, exploring death, grief, and the things that truly matter at the end of life. Her latest work, Breathtaking: Inside the NHS in a Time of Pandemic, spans the 4 months from New Year’s Day 2020 to the end of April that same year—a fleeting snapshot of a time during which life in the UK changed immeasurably.

“Pacing the kitchen and tapping a keyboard became a kind of nocturnal therapy”, she explains. These notes, typed “fast and furiously” while her family slept, open a window to life in the UK in its darkest hours. Turning the pages of Breathtaking, we relive the angst and uncertainty of those early months. The anguish about personal protective equipment (PPE) and testing, death tolls rising too high to take in, and the sudden, unexplained obsessions with baking bread and accumulating toilet paper that swept the nation. But, for those of us who know COVID-19 in only an abstract sense, following the news from the safety of our homes, Clarke gifts us a unique glimpse of life in the eye of the storm. As the crisis evolved, day by day, week by week, we learn, in real time, what life was truly like for those on the frontlines—those who risked everything, not knowing that they would see the other side. “To us”, she explains, beyond statistics and modelling, “the pandemic is a matter of flesh and blood. It unfolds one human being at a time”. In these darkest of times, Breathtaking shows us that the greatest sources of light came from within the NHS.

Beyond the inestimable challenges of treating a new disease, acquiring knowledge on the run as patients lurched from one physiological crisis to the next, health-care workers fought—through the physical barriers of masks, gowns, and distance—to restore the humanity to their practice that COVID-19 so cruelly stripped. Overnight, hospitals cleared of visitors, carparks emptied. For Clarke, whose work in palliative care has made her all too aware of the power of human connection, seeing patients isolated from their loved ones feels like a psychological assault. “Covid even steals the patients’ names. So great are the risks of communication in PPE that it is safer for the nursing team to use bed numbers to refer to the human beings for whom they care”, she writes. Humanity is restored by any means possible: medical students volunteer to liaise with patients’ families, many of whom are self-isolating and alone; hearts knitted by volunteers are used to symbolise the connection between patients and their families; health-care workers add laminated photos of their faces to their plastic gowns. “Our tools are uncertain and improvised”, she writes. “We use whatever we can to draw people back together and we refuse to settle for despair.”

Clarke’s style is intimate and generous, opening up to us her own home and family life. We join her pacing in her kitchen—glued to her phone—as she watches events unfold, first in Wuhan, then Lombardy, and finally on her doorstep. We watch her conceal her anxiety from her husband, guilty at even an insignificant deception. We feel her exasperation as PPE at the hospice runs perilously low. We feel her overwhelming desire to help, which drives her to volunteer on the frontlines. Misty-eyed, we’re there as she attempts to quell the fears of her 9-year-old daughter, terrified of losing her mother. “How can I possibly tell her I have volunteered, that I want to be the one helping these patients?”, she asks.

Although not yet over, the opportunity to reflect on these early pandemic months is at once cathartic and deeply humbling. Powerful personal stories allow us to grieve the loss we have suffered as a nation, far beyond the statistics, as well as to appreciate the sacrifices made by NHS workers and volunteers who put helping others above all else. Although Clarke cannot conceal her blistering anger at the failings of those in charge, at its core Breathtaking brims with pride and positivity. “Every single day, the grit and devotion of colleagues astounded me”, she writes. “In the 11 years I have practised as a doctor, I have never been prouder of nor more humbled by the NHS and its people.”

Complete Article HERE!

Ideal Practices For Providing End-Of-Life Care To A Loved One

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In a wheelchair in a nursing home, a woman in the last stages of a metastatic malignant breast tumor was asked what she needed for her 75th birthday. “Life” was her answer.

Aging and developing chronic medical health problems is a natural process. Unfortunately, some individuals have it harder than others and develop terminal illnesses that take a drastic toll on their health and those looking after them. In such situations, the best that close friends and family members can do is make the patient’s remaining time as pleasant and manageable as possible. The appropriate solution to turn to is good hospice or end-of-life care.

You may have heard the terms ‘palliative care.’ Suppose you have a friend or relative who has a terminal illness or is dying. In that case, palliative care aims to relieve suffering and handle problems while treating an actual illness such as cancer. The primary objective of end-of-life care is to ensure patients experience an acceptable level of comfort, personal satisfaction, and medical assistance.

Palliative care can help people who are no longer receiving treatment or whose illness is nearing death. It helps identify end-of-life care needs and facilitates trained caregivers and family members to meet all patients’ needs. It can take place at home, in nursing homes, and hospice care facilities. The palliative care team can help you set treatment goals and make crucial decisions.

Your loved one may lose the ability to speak, sit, walk, and eat. Daily tasks such as washing, grooming, dressing, and turning require full assistance from a caregiver. Your companion, the hospice team, or a caregiver with a terminal degree in nursing recommended by your doctor, can help you with these tasks. To ease the suffering, consider these ideal practices while providing end-of-life care to a loved one.

Talk to them and listen to what they have to say

Patients who know that their life is coming to an end may contemplate their beliefs, self-worth, or the purpose of their life. They may have questions about how they will be remembered or think of apologies or forgiveness from others. If the patient needs to talk about perplexing issues, you can speak and ask open or closed questions. If you’re not much of a talker, just lend an ear and listen as they unburden. Alternatively, you can also read books together, play music, or bring up very personal qualities of the patient.

Provide emotional support

Battling terminal illness and end-of-life situations can be emotionally exhausting for the experiencing them. If you are there, you can offer emotional support. Your presence nearby, sitting quietly, or holding hands can be comforting and reassuring. You can also make arrangements for other loved ones to visit and extend their support. However, to keep the patient’s comfort in consideration and ensure that you plan visits accordingly. That way, you’ll avoid too many people showing up at one time.

Creating a quiet environment with soft lighting and gentle music to remove distractions can improve the person’s mood, stimulate memories and help a person relax.

Provide comfort

Most terminal patients do not wish to make their caregivers uncomfortable. However, the truth is that there is only so much that you can do to provide comfort to someone in their final days. Given the situation, every bit counts. Consider the following tips:

  • While feeding, give a small spoonful of food. Cook meals enriched with essential oils and nutrients to ensure they’re eating healthy. It would be best to consult a doctor before meal prep to avoid giving them something that’s off the plate.
  • Dab the face with a slightly damp town to reduce dryness around the eyes. Apply medical-grade cosmetics to keep the appearance fresh and lively.
  • To facilitate breathing, gently turn the patient’s head, change the pillow or raise the head of the bed. Use a humidifier with a cool mist.
  • Apply ointments carefully on dry skin to reduce irritation.
  • Learn how to move and reposition people in bed to avoid injury.
  • Learn how to change sanitary pads, adult diapers, or insert a catheter to avoid discomfort while removing body waste.
  • Speak gently and reassuringly. Hold the patient’s hand or touch her/him gently and frequently ask if they need anything.
  • Use painkillers recommended by a doctor/professional caregiver only.
  • Observe whether the person is hot or cold. Change room temperature and bedding if necessary.

Consider respite care

It’s no easy feat to look after a patient in an end-of-life state; it takes a lot of patience, understanding, and nerve. The patient probably has many medical dispositions that require professional attention. You must be tolerant and composed enough to deal with that. However, there are alternatives to conventional caregiving options that can prove to be quite beneficial.

 Respite care aspires to provide relief for you and your family from the difficulties associated with end-of-life care. Respite care offers a unique opportunity for a mental break and recreation for everyone involved in the process. Not only is this method effective in providing comfort, but it serves as an excellent break from the otherwise gloomy atmosphere in traditional caregiving facilities. A hospice volunteer may spend a few hours meeting the patient to check on their health, or the patient may visit the hospice office close-by to the retreat.

Conclusion

Providing terminal care to a loved one can be emotionally and physically exhausting. The ideal way to go about it is by providing emotional support and comfort to your loved one. Support them, talk to them, and help them out with routine tasks such as eating and cleaning. Consider on-boarding a trained professional to ensure that you do not falter along the way.

Additionally, it would be wise to keep a watch on your own physical and mental health. You will be unable to look after your loved one if you cannot cope with the fatigue and stress that accompanies taking care of someone in their final moments. Don’t forget to love yourself in the process.

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!