Hospice staff help dying animal lover see her dogs and horse for one last time

Jan Holman, 68, had been away from her beloved pet dogs and horse for six weeks and was missing them all until she received a special visit – facilitated by her hospice

Jan was happy to be reunited with her dogs Monty and Rowley

By Millie Reeves

A terminally ill woman has had the chance to say goodbye to her two dogs and horse thanks to hospice staff.

Jan Holman, 68, was admitted to hospital six weeks ago and is now a patient at the Hospice of the Good Shepherd in Chester.

Her quick referral to the hospice meant she hadn’t had a chance to say goodbye to her dogs, Monty and Rowley, or Bob, her horse of 10 years.

Due to the pandemic Jan was unable to have any visitors at the hospital, and her husband of 46 years, Dennis, said she found having no visitors or personal contact difficult.

After four weeks, Jan was moved to the hospice to receive end-of-life care.

Knowing Jan was also missing her animals, the hospice arranged for a visit from her two Cavalier King Charles Spaniels, Monty and Rowley, as well as her horse, Bob.

Even though she was unable to get out of bed, Jan was excited to have the chance to see the gang one more time.

Dennis said: “It was just such a relief once Jan was moved from the hospital to the hospice in Chester and we were able to have named visitors who could come and see Jan regularly, however we never imagined that we would be able to include Monty, Rowley and Bob on the visiting list.”

Staff brought in Jan's two Cavalier King Charles Spaniels Monty and Rowley
Staff brought in Jan’s two Cavalier King Charles Spaniels Monty and Rowley

He continued: “All the staff here have been wonderful. Jan has been so well cared for, nothing is too much trouble even down to the chef coming every day to see what he can tempt Jan to eat.

“Nothing is too much trouble, including arranging for a horse to visit!”

Before her illness Jan, who has lived in Chester all of her life, could be seen dressed as Chester’s Tudor Lady delivering tours of the city where she has been a Blue Badge Tour Guide for 37 years.

Jan said: “I just can’t believe what the staff here at the hospice have done for me. Until a few weeks ago I was still riding Bob every day and he is such an important part of my life, and I have missed him so much.

“I knew that arranging for my dogs to visit was possible as we had a neighbour who was a patient at the hospice a few years ago and we were allowed to bring the dogs to visit her, but I just didn’t expect that they would ever be able to give me the chance to see Bob one more time.”

Horse Bob came to visit through the patio door
Horse Bob came to visit through the patio door

Louise Saville King, deputy ward manager at the hospice, said: “It was obvious when Jan first came to us that she is passionate about her animals and that horses have played a large part in her life for many years.

“The ethos of hospice care is not just about caring for the clinical needs of our patients but also looking after their emotional and spiritual needs as well.

“It’s about making a difference to our patients and their families in whatever way we can.

“We know that sometimes people are scared at the thought of coming to the hospice, but it’s a positive place where people are supported and well cared for.

“The work of the hospice really does make a difference to people’s lives.“

Complete Article HERE!

Euthanasia Du Jour?

Doctors’ Hidden Truth On End-Of-Life Care

Amid an ongoing public debate in France on end-of-life palliative care, doctors tell Le Monde how they secretly help their patients die.

By Laetitia Clavreul

As the president of a doctor’s union says of treating the chronically ill, “We’ve all pushed the syringe” at some point in their careers.

Death is a topic that doctors rarely discuss among themselves. Too heavy, too personal. Instead, these things tend to be between attending physicians and their patients, who they follow until their very last minutes.

French President François Hollande has promised a draft bill on end-of-life assistance, and the role doctors play for chronically ill patients is at the heart of the debates. Some have agreed to tell us about their practice, whether anonymously or using their names.

“Doctor, will you help me?” The question is sometimes asked when the end of life is not that near. “I tell them that I am not the right doctor for that,” says doctor O., who has been a general practitioner in the west of France for the past 30 years. “I don’t claim to be the one to decide.”

But when the final moments truly have arrived, it’s a different story. He helps patients “go” when they are in pain, when life has become unbearable. Often, he says, “They do not voice any request. But when we touch their forehead with our hand and they are looking straight at us, they tell us with their eyes: ‘I’m ready.’”

He recalls a Saturday night at 11.30 p.m., when an entire family was holding vigil for a mother in pain and asked him to “do something,” because that was what she wanted. He repeated that he was not allowed to, that he could only increase the morphine dosage. “But I knew what the outcome was going to be,” he says.

Dr. Stéphane Pertuet, from the northern French town of Barentin, says a patient once asked him, “You’ll do what’s necessary, won’t you?” The patient was telling him he was scared. The doctor comforted the dying man, and said that he would.

Pertuet remembers a former military man, who made him promise not to hospitalize him “at the end,” and to do “what’s necessary” so he could die “in a dignified” manner. One day, when he was in a state of shock, he told the doctor, “Finish me.” “Of course, I didn’t do it,” Pertuet says. “But I made sure that he wouldn’t suffer by setting up a graded treatment, aware that it could kill him. If he felt that I was hesitant, it would have been a fiasco.”

Doctors use various drugs, all of them legal, to help ease a dying patient’s pain and usher them peacefully into death. Curare or potassium chloride would immediately lead to the death of the patient. But using those drugs would be a crime. What doctors can legally do is prescribe sedation to relieve suffering and agony. They can mix anxiolytics, morphine or other analgesics, leading to respiratory depression and death a few hours or days later. What the law forbids is “intentionally” causing death.

In the patient’s shoes

Words are important, says Dr. G., a general practitioner in southeast France. “Yes, I help people die,” he says. “Killing is different. It’s an immediate action. Increasing the dosage has nothing to do with euthanasia.”

When Pertuet arrives at the home of a patient he is treating, he doesn’t necessarily have a preconceived idea of what he is going to do, he says. “I suppose I sense that I will lead the patient to death, but I have no other choice. Otherwise, the patient suffers.” He tries to step into the patient’s shoes, taking into account his personality, culture and religion.

Bernard Senet, a retired physician working as a medical officer at an association advocating legalizing euthanasia, has worked in private practice and also in a palliative care environment. When patients are suffering agonizing pain, Senet says it is his duty to help them.

“When the patient is uncomfortable despite the morphine, we open up the automatic syringe and it all goes,” he says. Once or twice a year over the course of his career, he has found himself in this kind of situation, and it is no doubt the case for other physicians too.

In fact, he knows it is because he often receives calls from fellow doctors asking for his advice. “I’m not an exception,” he says. “For fear of judges, the others don’t want to say that we do it, in appropriate conditions, and that it’s never easy,” he admits. “But from the moment you stop the treatments, you know you are sentencing the patient to death. From the moment you dispense Hypnovel at the hospital, you know you will cause a respiratory arrest.”

“I assist until death”

Not every doctor is willing to assist their patients in death, but for the ones who do, they regard it as part of their job. “I remember my first assistance very clearly,” Pertuet says. “It is the quintessence of our commitment. It is then very important to be a good technician and a very good psychologist. But it always leaves a mark.”

Dr. R., a general practitioner specializing in palliative care near Paris, says he assists “until death, because death is part of life.” But recently, a seriously ill patient under 70 years old asked him if he would agree to give him “an injection.” Even if the law changes, the doctor says he would never go that far.

The law, in fact, is not necessarily at the heart of everyone’s concerns. Pertuet hasn’t really altered his handling of these cases over the years, he says. “I watch the debates between experts with amusement. They hide behind religious beliefs, sacrosanct ethics and palliative care. But for me, the more I think about it, the less sure I am.” What is important “is what they never talk about: humanity, technique, the doctor-patient bond.”

The French Leonetti legislation, passed in 2005, has made doctor G. more relaxed. “We used to be limited on a legal basis,” he says. “We couldn’t handle therapies when we knew we were at a lethal level.” Even the French medical college, which he characterizes as typically “quite retrograde,” last year announced its support of terminal sedation for patients with insurmountable pain, calling it “a duty of humanity.”

“It’s not a step towards euthanasia,” insists Dr. Jean-Marie Faroudja, ethics head of the national medical college council, pointing out the necessary commitment to the Hippocratic Oath. “Killing must remain prohibited.” He acknowledges that “between causing death and putting the patient to sleep until it arrives, the difference is narrow.” But it exists.

Complete Article HERE!

This woman guides dying Mainers through the end of their lives

Molly “Bones” Nelson, a certified end-of-life doula, stands at her pumpkin farm in Cornish. Nelson is a death doula credentialed by the International End of Life Doula Association, and the subject of a new documentary screening as part of the Camden International Film Festival.

by Nick Schroeder

There once was a man who lived on a hill in rural Maine. He was 97, and had no living family and few friends. He had neighbors, but most of them were half his age or younger, and the man could sense that they viewed him with reserve. This bothered him, so he hired someone to help him figure out the problem.

“He said, ‘The neighbors don’t understand me,’” said Molly “Bones” Nelson, who offered her services to the man during his final days. “‘I’ve been here for 50 years and they fish on my land but they still think I’m the crazy old guy they can’t talk to.’”

Her solution? Throw a party.

“He kept telling me, ‘I’m not dying; I’m graduating,’” Nelson said.

Nelson is a death doula. She helps people with the emotional and psychological work of confronting the terminal stage of life, whatever that entails. Often, her work looks like talk therapy, working through death’s thorny questions with those facing them. She also works with clients who have lost someone suddenly, such as in a miscarriage or abortion. In this case, it meant helping a man find a kind of happiness at the end of his life.

To prepare for the party, the man and Nelson baked cupcakes that looked like skulls, crafted a tasseled cap for him to wear, and painted a mural of scenes from his life. They had partygoers write questions they had about death — even unanswerable ones — and throw them in a bowl. Then they played a game: pick a stranger at the party and take turns answering questions from the bowl.

“We played that game for three and a half hours,” Nelson said. “People didn’t want to stop.”

Nelson is the subject of a locally screening documentary, “death and her compass” by the California-based filmmaker Annie Munger. The film is part of the Camden International Film Festival, which runs virtually through Sept. 26.

While they aren’t considered medical professionals, death doulas perform a work that has existed around the world for centuries. In present-day America, the kind of end-of-life care work they provide is something of a lost art.

“Our elders get put off to the side,” Nelson said. “Older people have a ton of wisdom and experiences to share about their lives.”

The cost of in-home elder care has skyrocketed in the U.S. even before nursing homes began facing staffing shortages and enhanced risk of infection with the coronavirus. The trend leaves little time and resources for talking through the end of life.

But it’s often no easier at home. The vast majority of older people — 88 percent — prefer to receive government assistance to age at home rather than receive care in a full-time nursing home or senior living facility, according to a study by the Associated Press-NORC Center for Public Affairs Research published in May. That can push the expensive and time-consuming work of caring for elderly people onto families, who struggle to absorb the often-invisible costs of managing a family member’s physical and mental health, memory loss, food and other needs while juggling their personal and professional lives.

“Death is a huge part of life,” she said. “You’ve had all this amazing growth, adventure and experience. If you don’t process it and have those difficult conversations, it’s like skipping dessert.”

Nelson likes to let her clients lead the process. In the initial phase, they hang out, talking through fears and memories, anything of significance. The dying person supplies their own spiritual beliefs, and she works with what they give her. Big religious and existential questions inevitably come up, but Nelson mostly works with relationships on the mortal plane. (Nelson keeps information from clients confidential, but others, like the 97-year-old, allow her to discuss their cases in general terms after their passing.)

Then, Nelson works with them to design a “legacy project,” something they can leave behind to friends and family, or to the world, that doesn’t neatly fit in a legal will. It might be a party or it might be a quilt, a donated plot of land or a long poem she writes with the dying person’s help and reads to them when fear rides high.

Nelson learned the trade with the International End of Life Doula Association, a training organization founded by New York hospice worker Henry Fersko-Weiss in 2003. Fersko-Weiss was a social work manager at the largest hospice in New York City, accepting roughly 500 patients a day. While he saw them receive adequate medical care, the sheer volume of patients needing hospice care meant that some needs were going unattended.

“I kept seeing these gaps,” Fersko-Weiss said. “As dedicated as the clinicians are, unfortunately the structure and logistics of hospice made it difficult for clinicians to spend a great deal of time and do deep work with people who are facing death.”

Something clicked when Fersko-Weiss talked with a friend who was becoming a birth doula. He trained to become one too, eventually modeling an end-of-life doula program from its teachings about helping expecting parents usher babies into the world. He could train volunteers to be present for dying people in a way similar to those learning to be birth doulas.

Nelson is the only one in the state formally credentialed through international association, which offers a rigorous certification process. There are roughly a dozen working death doulas in Maine who have trained through the association or the End of Life Doula Alliance, which was founded in 2017.

Nelson, 57, took a long road to this line of work. The nickname “Bones” is unrelated to her profession — a scrawny child, she’s had it since youth — but many clients find as much humor in it as she does. She moved to rural Maine from New Jersey at age 18 and has been farming ever since. Today, she primarily grows pumpkins.

Death has been a part of Nelson’s life since birth. She was born with a heart condition, a thin-walled aorta that’s “shaped like an hourglass.” Doctors have told her that it “could explode at any moment.” In 2007, she had a stent put in her heart, and it tore through two layers of her aorta. But she survived and continues to farm, hike and ride dirt bikes.

She’s also lost those close to her. Nelson’s mother died by suicide at the age of 82, after multiple attempts during her life, and her father died of cancer in 2013.

“I’ve had a lot of healing to do,” Nelson said.

Nelson takes death seriously, but doesn’t necessarily see it as a grave subject. It’s easy to imagine her combination of folksy wisdom and well-timed humor softening some thick layers of fear. As shown in “death and her compass,” Nelson’s sessions with clients seem much less like a psychological evaluation or transcendental ritual than two old friends just talking.

Nelson said that she “doesn’t believe in death” after a life spent outrunning its shadow.

“I got a T-shirt that has a picture of a sloth on it. It says: ‘Live Slow, Die Whenever,’” she said with a laugh.

The sentiment captured the way Nelson has come to think about the subject.

“I don’t feel rushed because I don’t feel like there’s an end,” she said. “If I don’t get to ride my dirt bike across Mongolia by the time I’m 60, so what. I’ll just do it next time.”

Complete Article HERE!

What is a death doula?

How trained companions help people face their last days

Death doulas can arrange pre-funeral ceremonies with their clients, in a bid to relive happy memories and get some closure.

From organising living funerals to offering grief support, these specialists aim to create a ‘death-positive landscape’

By Lavina Dsouza

Arlena Marie from Arizona, Texas, decided to take a leap and ask in Side Hustle Nation, a Facebook group, how to become a “death doula” and market herself as one.

While some were aghast at hearing such a profession exists, others had their interest piqued because, morbid as it sounds, every person on the planet is a potential customer.

The word doula originates from the ancient Greek term doule and translates as a person who serves. Birth doulas are now common and, like midwives, provide services during the birthing journey. A death doula, on the other hand, offers emotional support to people who believe they’re nearing the end of their life and would like to make the days count.

Death is the single certainty in life, yet people continue to fear it instead of preparing for it. I wanted to create a death-positive landscape.
Avril Carr, death doula from Al Ain

While professional moirologists (also known as “crying ladies” in some cultures) have been around for centuries and are hired to wail at funerals, the pandemic has brought death doulas to the fore, as an alternative form of mourner.

Avril Carr is a death doula from Al Ain. She trained as a hypnobirthing teacher, breastfeeding supporter and paediatric sleep consultant, and realised that while a wealth of knowledge is available for the birthing process, the reality of death remains largely ignored.

“We’re suspicious of death, which is interesting because not everyone will give birth, and yet there are countless ways in which mothers and fathers are encouraged to prepare for birth. Death is the single certainty in life, yet people continue to fear it instead of preparing for it. I wanted to create a death-positive landscape,” Carr tells The National.

Having a calm presence to see people through difficult moments and celebrate any glimpses of beauty together is a much-needed trait for death doulas. Carr says the feeling of fulfilment when helping someone with death anxiety is an extremely rewarding experience.

“We care for clients in ways that are personally meaningful and affirming to them. Our focus is assisting people with planning, preparing and processing,” says Francesca Arnoldy, a death doula from Burlington in the US, who also developed the end-of-life doula training programme for The Robert Larner, MD College of Medicine at the University of Vermont.

The most heartbreaking thing is to hear someone say: ‘I wish I had known about you sooner’
Lala Langtry-White, doula

Unlike hospice nurses and other end-of-life support providers, death doulas are emotional companions first and foremost, and must be able to customise their services based on what a person is looking to do to help ease the process.

Planning could involve creating schedules to meet others, having conversations that help with the transition, organising a pre-funeral while the person is still alive and sorting through belongings. Some may even want to make a scrapbook or involve family members to help them through the grief.

The amount of grief and uncertainty the pandemic brought has made many – both the ill and the relatively healthy – want to discuss death and have all their affairs in order, be they practical or emotional.

While stay-at-home measures were enforced in many places across the world, death doulas, like most others, turned to technology and came up with creative ways to virtually bring families together during tough times, making people realise they needed tools and information to bolster their sense of readiness.

Jessica Mendivil, a death doula from California, developed free community calls and training for families to help them cope with the loss of loved ones and general lack of preparedness.

Carr realised that while she missed being physically present, she could still impart training virtually on setting the death space, which included different ways to record one’s legacy and sit vigil when death was near.

Small and Mighty Babies, run by Lala Langtry-White and Joanne Hanson-Halliwell in the UAE, set up and continues to offer an online Love Through Loss community, plus monthly support evenings and access to voluntary bereavement doula support and counselling with The LightHouse Arabia.

It’s a lucrative job, but professionals know it can be a vulnerable and intense journey. Death is still not an easy subject for most people and perhaps never will be, but Langtry-White says the most heartbreaking thing is to hear someone say: “I wish I had known about you sooner.”

Complete Article HERE!

Why Death Doulas Can Be Especially Necessary for Folks in the LGBTQ+ Community

By Gabrielle Kassel

According to a survey of 1,528 LGBTQ+ people focused on the state of the LGBTQ+ community in 2020, conducted by the Center for American Progress, more than one in 10 LGBTQ+ people say they have been mistreated by a health-care provider, and 15 percent say they put off or completely avoided medical care in response to such discrimination. And those numbers are even higher for trans folks, with 33 percent saying they’ve had to teach their providers about being trans in order to receive appropriate care, and 38 percent saying they’ve dealt with a provider who was visibly uncomfortable with their gender identity.

Historically this has meant that queer folks have had to shoulder the burden of educating others and also being discriminated against in health-care settings, even in their final days. In recent years, though, that’s started to change with the rise of death doulas entering the end-of-life-care industry to help those who are dying make that transition. And for members of marginalized communities, like LGBTQ+ folks, such care can be especially necessary.

Death doula, defined

Sometimes called a death midwife, transition guide, end-of-life helper, or end-of-life-doula, a death doula does for the dying (and their loved ones) what a birthing doula does for a to-be parent (and their loved ones). “A death doula is holistic provider who offers non-medical, non-judgmental support to those who are dying as well as their loved ones,” says queer death doula and death-work activist Tracey Walker, who serves on the board of directors of National End of Life Doula Alliance (NEDA). While death doulas can benefit all people during this sensitive time, they are particularly helpful for members of marginalized communities—just as is the case with birthing doulas. And dying members of the LGBTQ+ community, in particular, stand to benefit in specific ways.

The support a death doula provides—whether logistical, emotional, physical, spiritual, or a combination—varies based on the specific death doula as well as the client’s needs and wants. “Some death doulas primarily do paperwork around advance directions, while others primarily function as liaisons between the doctors, the patient, and their family,” Walker says. Death doula work may also entail doing household chores, sitting vigil, sorting possessions, writing letters to living loved ones, planning the funeral, and offering the comfort of having witnessed death previously.

While the person dying and their loved ones often can see out the services a death doula provides without this extra support, these tasks can skew emotionally (and maybe sometimes physically) taxing, so outsourcing can be helpful for those who have access to such services. To contextualize this point, Walker says “most people also could cut their own—or a family member’s hair—yet choose to delegate the task out.” In that spirit, people may choose to delegate certain tasks to a death doula in order to free up space and energy to be present for the person passing in their last days, weeks, months together, Walker adds.

How death doulas can help queer patients combat queerphobia and queermisia in health-care spaces

Death doulas are not nurses or doctors, but they can take on the emotional labor and mental energy associated with educating health-care providers about their patients’ positionality, says sex educator and death doula Sarah Sloane, host of the Social Intercourse podcast. And that’s important, considering the ongoing legacy of members of the queer community being disrespected and discriminated against (aka, been victim to queermisia) in health-care spaces.

For LGBTQ+ elders in particular, who lived through the AIDS epidemic, which was rife with queermisia (before it was called AIDS, the virus was dubbed GRID, or Gay-Related Immune Deficiency), the desire to avoid medical care in order to also avoid discrimination and stigma is likely even higher.

In times of need, queer patients need advocates, which is where death doulas can come in for end of life care.

Furthermore, despite estimations that more than 5 percent of the United States population is LGBTQ+ (which is nearly triple as many the estimation of red-headed people, by the way), research has found that only 39 percent of doctors feel they possess adequate knowledge to treat queer patients’ specific health needs. In short: The health-care space has largely been and largely continues to be one that perpetuates transphobia, biphobia, and homophobia. And in times of need, queer patients need advocates, which is where queer-informed death doulas can come in for end-of-life care.

In addition to advocating for the quality of health care that members of the LGBTQ+ community are entitled to, queer-informed death doulas can also ensure that providers are respecting and affirming queer patients’ pronouns, as well as treating their partners as partners—and not siblings, or worse, strangers, for example, she adds.

Death doulas can help model end-of-life transitions that *don’t* prioritize the nuclear family

In many cultures, death is regarded as a family-centric transition, with the dying surrounded by their children and relatives. “But [that idea] assumes that someone’s biological family is a safe and supportive structure in their life,” says Sloane. With data from 2013 showing that 39 percent of LGBTQ+ people have been rejected by or disowned by their biological family members at some point in their life, that’s simply not the case for many queer individuals. (Indeed, society has made strides in accepting the LGTBQ+ community over the last eight years, but that percentage is still not zero.)

Beyond that, in light of a combination of biological factors as well as laws and financial burdens that stand between queer people and parenthood, LGBTQ+ folks are less likely to have kids, and LGBTQ+ elders are also more likely to be single than heterosexual people, Walker says. These factors combined make LGBTQ+ folks less likely to have biological or legal family members supporting them throughout end-of-life care, opening up more need for a queer-informed death doula to be their advocate.

That’s not to say, however, that queer people do not have loved ones or family—many have chosen families made up of people of all ages, for whom they share queer platonic, romantic, or sexual love. “A queer-inclusive and queer-informed death doula will be able to treat these non-traditional family members as family members,” says Sloane.

For example, someone who is ethically non-monogamous may have two or three partners of equal importance, but only one of whom they’re married to, Sloane says. While traditional medical settings would only value and share information with the (legal) spouse, the death doula can value all partners equally.

Why death doulas for the queer community need to be queer or queer-informed

Not just anyone can be an effective death doula for members of the queer community. That’s because all people have unconscious biases that shape our worldview and the care we give. “For queer people, having a queer death doula can be comforting,” Sloane says, because it provides assurance that the death doula won’t bring in internalized or externalized bias against queer people. Furthermore, a queer death doula may be more conscious about asking a person’s pronouns and saving someone from the task of code-switching, or alternating patterns, gestures, and expressions.

As an outsider to queer spaces, “a non-queer death doula will need to ask questions that a queer person would just know the answers to, due to their lived experiences as a queer person,” Sloane adds. Take, for instance, that in some communities, it’s common for a person to be bathed following death, before burial. “A queer doula may be more likely to know that and thus ask questions like, ‘Do you want your body to be washed?’ or ‘What are your boundaries and preferences while being washed?’” Sloane says. These questions are important because, she adds, “a gender non-conforming person may not want their unclothed body to be seen by any family member or friend, other than the lover.”

It bears mentioning that not all effective doulas for queer people need to be queer themselves. Queer-informed doulas—or, doulas who have undergone sensitivity training and who understand the unique discriminations, needs, wants, and wishes of members of the LGBTQ+ community—can be valuable, too. “Queer-informed and queer death doulas typically say as much in their social media marketing and webpage, and talk about specializing in LGBTQ+ elders,” says Sloane.

To help you find a queer-informed or LGBTQ+ death doula, check out the Gay and Lesbian Medical Association provider directory or ring your local LGBTQ+ center. Ultimately queer-informed death doulas can be a profound addition to the end-of-life care team of a LGBTQ+ person to help ensure that they and their loved ones can be present with the time that remains.

Complete Article HERE!

Qualitative Study Shares Strategies for Successful End of Life Conversations for Patients With Cancer

By

End-of-life (EOL) discussions such as advanced care, palliative care, and discontinuation of treatment are consistently being missed, according to a study published in JAMA Network Open; however, investigators highlighted existing strategies that are being utilized to achieve successful EOL conversations.

Investigators found that out of 423 outpatients encounters with 141 patients with advanced cancer, only 21 encounters (5%) included EOL discussions. When investigators included a random sample of 93 encounters, 35 encounters (35%) included missed opportunities for EOL conversations. Three patient/oncologist dyads had more than 1 encounter with a conversation pertaining to EOL, which translated to 17 of 141 dyads (12%) having at least 1 event of EOL discourse. The dyads included 13 of 39 oncologists (33%).

“In this secondary analysis of outpatient oncology visits, EOL discussions were rare and missed opportunities for these discussions were common. When oncologists did discuss EOL, they framed it around trade-offs, anticipatory guidance, and acknowledging patients as experts,” investigators of the study said. 

Investigators identified 3 strategies that are being used to navigate opportunities for successful EOL conversations:

Those who take advantage of opportunities for EOL discussions are able to reevaluate treatment options based on patients’ concerns, outlining the risks and benefits between treatment continuation and discontinuation. When suggesting chemotherapy for treatment, it is imperative to be transparent in letting patients know it could prolong survival, but there would be discomfort from adverse effects, the investigators stated. This allows the patients to make decisions about their own future.

Another strategy that has been utilized when making EOL decisions is allowing patients to be experts on their treatment decisions in order to meet their goals. This was accomplished by positing questions such as “What would you like?” and “What was the goal you would like to attain?”. By exploring a patient’s goals and allowing them to lead the conversation, the patient can shape treatment recommendations. Patients are able to explore their thoughts and feelings with regard to treatment discontinuation in a manner that is approachable. This allows one to act as a facilitator who creates an environment of reflection, while the patient shifts their focus to decision making.

The use anticipatory guidance to frame conversations pertaining to treatment reevaluation is another useful strategy. Anticipatory guidance can be used to identify a potential timeframe in which patients will need to make decisions regarding quality of life over cancer-directed treatments. During this time, it is the oncologist’s responsibility to provide sign posts to convey when it may be time to consider quality of life over treatment. This helps patients set appropriates goals and limits as to when they might like to discontinue treatment.

There are a number of hurdles that lead to missed opportunities for or deflected EOL conversations, one of which including responding inadequately to patient concerns. Patients who are concerned about disease progression or dying are often met with partial, avoidant, or absent responses instead of opening the conversation about EOL, which limits the opportunity for patients’ conversations around goals, values, and preferences. Additionally, giving little to no response when a patient expresses fear at the idea of living for years with late stage disease could prevent the occurrence of conversations around disease burden, treatment decision making, and EOL care.

Although speaking about the future optimistically may seem helpful it does little to address patient concerns. Instead of using anecdotes about other patients who exceeded life expectancy, consider using that moment to realistically discuss the patient’s prognosis.

Additionally, expressing concern over patient’s decision to discontinue treatment could be another opportunity for a missed discussion. Although one might be able to justify their treatment decisions by stating that they are in line with the patient’s goal, it is a missed chance for discourse pertaining to quality of life and treatment goals. Moreover, declaring a patient’s next steps for treatment without holding a proper conversation is yet another missed opportunity wherein a conversation about the patient’s options could have taken place.

“Although we recognize that not every patient or appointment may necessitate an EOL discussion, all patients in this study had stage IV malignant neoplasm and their oncologists had previously acknowledged that they ‘would not be surprised if they were admitted to an intensive care unit or died within one year.’ Despite the urgent necessity of EOL discussions within this population, we found far more missed opportunities than actual discussions in this analysis,” the investigators concluded.

Reference

Knutzen KE, Sacks OA, Brody-Bizar OC, et al. Actual and missed opportunities for end-of-life care discussions with oncology patients: A qualitative study. JAMA Netw Open. 2021;4(6):e2113193. doi:10.1001/jamanetworkopen.2021.13193

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

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

by Robin L. Flanigan

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

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

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

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

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

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

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

Death doulas a ‘missing piece’ in care

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

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

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

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

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

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

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

Ask plenty of questions

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

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

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

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

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

Some questions to ask a death doula are:

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

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

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

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

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

What do death doulas do?

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

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

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