‘Dying is so medicalised. It makes people fearful’

The founder of Soul Midwives on how greater compassion and care can lead to people having a more gentle, tranquil death

Felicity Warner: ‘We need to take the care of dying people back into the community.’

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Felicity Warner wants everyone to die well. She is the woman behind Soul Midwives: non-medical companions who provide one-to-one holistic and spiritual care to people who are dying. The term “midwife” is no accident. It refers to the similarities between drawing our first breath and our last. Just as there are certain stages for a woman in labour prior to giving birth, so are there certain end-of-life stages before someone eventually dies, says Warner. It’s the same idea as end-of-life doulas. “A soul midwife will recognise those stages and will work with them like a midwife would at birth.”

Soul midwives support a dying person to set out their wishes for the final days in a death plan. They listen, keep vigil, allow people to talk openly about their impending death and fears, and provide therapeutic support to help alleviate anxiety and pain. This can be through breathing techniques, massage, sound and music therapy and essential oils. As the “soul” in the title suggests, the role also offers a spiritual dimension linked to healing and detachment. But it’s not just about helping people to die without fear, loneliness or anxiety. It’s also about making people realise they are valued, says Warner. “I’m very keen on that because a lot of people we work with don’t have anyone in their lives. Making them feel that they are special is a very big part of our role and to honour them as the people that they have been, because you can be made to feel very anonymous when you’re dying, whether old or young”.

The daughter of the former Conservative MP David Mudd, Warner cites the “harrowing deaths” of her grandmother – with whom she had lived after her parents divorced when she was six, who died of lung cancer when Warner was 14 – and her stepfather two years later that forced “an enormous amount” of processing and reflection early on and led her to become a health journalist.

In the 1990s, Warner found herself writing a number of features about women dying of breast cancer. Interviewees revealed their loneliness and isolation and the sense of being locked in a room with an elephant in it. “The biggest thing was the feeling that they couldn’t talk to anybody honestly about the fact they knew they were going to die, because everybody kept saying ‘we’ll get you through this; you won’t die’.”

They talked and Warner listened. “I think there was a healing in that they could just talk frankly about how they really felt to somebody who wasn’t judgmental in any way.” But Warner saw her journalistic boundaries begin to slide as she stepped in to fill unmet needs, such as giving a massage after one of the women confided that “nobody touches me any more” because of her cancer. When the last of six women she had interviewed died, her decision to help dying people full-time was realised.

She began volunteering in her local hospice, where she noticed “big gaps” in care delivery: the “one-size-fits-all” approach, for example, that saw everyone “wrapped up with crocheted blankets” and “given plastic cups to suck out of”, regardless of their age or their personal needs.

“I sat there thinking it would be so useful if someone could join up the dots in what I was seeing with people who were dying. If there could be some kind of middle ground between the clinical care given and the sort of tender loving care that goes such a long way when you’re really feeling ill, because that seemed to be very lacking or offered very willy-nilly and not always to everybody.”

Warner began road-testing what would become her “gentle dying” approach – the basis of soul midwifery. “It was realising how little things can make such a difference to people at the end of life. Even just sitting and holding their hand is massive to someone who has got no one else sitting with them, and having time to do that is a big thing.”

Warner outlined her philosophy in a book in 2003, then began delivering training in Dorset, where she lives. So far, more than 1,000 individuals have paid to attend her courses, including Macmillan and Marie Curie nurses, doctors, chaplains, social workers and psychotherapists working in the NHS, as well as people from South Africa, Canada, the US and Australia. Around 40% of trainees have gone on to practice.

Warner runs a referral service from the Soul Midwives website. Many practitioners offer sliding scale charges, opt for a donation or charge nothing at all. “Nobody would ever be turned away if they could not pay,” says Warner. “It is not about the money. Nobody would be excluded on financial grounds.”

Soul midwives can now be found in care homes, hospices, hospitals and within the home throughout the UK. They liaise with GPs and district nurses if someone wants to die at home. Warner admits that it’s taken time to build trust with other care professionals, but adds, “this trust has grown as the value of our work is being understood and seen.”

For her, soul midwifery is a movement that can fill the gap once met through closer community networks and she views dying as a process rather than an event – something that she feels has been lost over the generations. Recently Warner has introduced the idea of soul midwife “residencies” so that end-of-life discussions leave the confines of hospitals and hospices. “We need to bring the care of dying people back into the community. It’s been so medicalised and taken out of most people’s normal environment, and that makes it very fearful [for people].”

She cites a recent example of a soul midwife pitching up at a library for a morning so that people could come and discuss various aspects of dying. She now hopes to persuade a coffee shop chain to host residencies.

What is clear is that ensuring a tranquil, gentle death for others is also good for Warner’s own soul. She says: “I feel it’s my reason for being here.”

Complete Article HERE!

Not all Americans have a fair path to a good death – racial disparities are real

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What does it mean to “die well”?

The world got an idea recently from the 92-year-old Buddhist monk and peace activist Thich Nhat Hanh, who popularized mindfulness and meditation in the U.S. The monk returned to his home in Vietnam to pass his remaining years. Many admired his desire to live his remaining time in peace and dignity.

Researchers from the University of California, San Diego recently did a literature search to understand what Americans might consider to be a “good death” or “successful dying.” As can be expected, their findings varied. People’s views were determined by their religious, social and cultural norms and influences. The researchers urged health care providers, caregivers and the lay community to have open dialogues about preferences for the dying process.

As scholars who study social health and human services psychology, we found something missing in these conversations – how race impacts life span.

It’s important to recognize that not everyone has an equal chance at “dying well.”

Black population and ill health

Take the disease burden of the African American population.

African Americans experience an earlier onset and greater risk of what may be referred to as lifestyle-related diseases, including cardiovascular disease, stroke and diabetes. More than 40% of African Americans over the age of 20 are diagnosed with high blood pressure, compared to 32% of all Americans.

In addition, the Centers for Disease Control and Prevention reports that the likelihood of experiencing a first stroke is nearly twice as high for African Americans compared with whites. African Americans are more than two times more likely to experience a stroke before the age of 55. At age 45, the mortality rate from stroke is three times higher for blacks compared to whites.

This disease burden consequently leads to their higher mortality rates and overall shorter life expectancy for blacks compared to whites.

And while the life expectancy gap differs by only a few years, 75.3 for blacks and 78.9 for whites as of 2016, research suggests that African Americans suffer more sickness. This is due in part to the increased prevalence of high blood pressure, obesity and diabetes in this population.

Genetics, biological factors and lifestyle behaviors, such as diet and smoking, help explain a portion of these differences. However, researchers are still learning how race-related social experiences and physical environments affect health, illness and mortality.

Access to health care

factor is that African Americans have historically underutilized preventive medicine and health care services. They also delay seeking routine, necessary health care – or may not follow medical advice.

One study found that during an average month, 35% fewer blacks visited a physician’s office, and 27% fewer visited an outpatient clinic compared with whites.

“The only time I go to the doctor is when something is really hurting. But otherwise, I don’t even know my doctor’s name,” said a young African American male during a research study in Chicago, Illinois.

There are reasons for this mistrust. Researchers who study medical mistrust argue that high-profile cases of medical experiments are still playing a role in how African Americans view health care systems and providers. In the past, physicians have intentionally done harm against people of color. A well-known case is the Tuskegee Study of Untreated Syphilis in African American men, which lasted from 1932 to 1972.

In this clinical study, 399 African American men, who had already contracted syphilis, were told that they were receiving free health care from the government. In fact, doctors, knowing their critical condition, were awaiting their deaths to subsequently conduct autopsies and study the disease’s progression.

Even though penicillin had been proven to treat syphilis by 1947, these men were denied the treatment.

Why discrimination matters for health

Other studies suggest that regardless of their knowledge of past medical abuse, many African Americans have low levels of trust in medical establishments.

“Doctors, like all other people, are subject to prejudice and discrimination,” writes Damon Tweedy, author of “Black Man in a White Coat: A Doctor’s Reflections on Race and Medicine.” “While bias can be a problem in any profession, in medicine, the stakes are much higher.”

Unfortunately, these fears are underscored by empirical evidence that African Americans are less likely to receive pain medication management, higher-quality care or survive surgical procedures.

In addition, a growing body of literature has established that experiences of discrimination are extremely harmful for physical and mental health, particularly among African Americans.

This research adds to the body of evidence that experiences of discrimination harm people’s health and may contribute to the increased rates of premature decline and death among blacks.

What does it take to die well?

As African American scholars, we argue the “art of dying well” may be a distant and romantic notion for the African American community.

African Americans are also exposed to earlier and more frequent deaths of close loved ones, immediate family members and friends.

Their increased “vulnerability to untimely deaths,” writes Duke University scholar Karla Holloway, shows African Americans’ lack of access to equitable and fair paths in life.

Before defining “a good death,” American society must first begin to fundamentally address how to promote quality living and longevity across all racial groups.

Complete Article HERE!

When the future is running out, narrating the past helps to prepare

By Dhruv Khullar

How should you live when you know you’re going to die?

It is perhaps the ultimate, eternal question — one we all have to grapple with, but mercifully, don’t have to, until the end is crystallized by our own illness or that of a loved one. Humans may be the only animal capable of grasping mortality, but it’s usually not something on our minds — until it is.

It’s a question I confront frequently as a physician caring for seriously ill patients. One morning some months ago, I met an older man with an aggressive cancer that had turned an avid runner into a voracious reader. He glanced up from his newspaper as I entered the hospital room.

“It’s [a] strange feeling, you know, reading about a world you’ll never get to see.”

After several rounds of chemotherapy — each more toxic than the last — he decided he had had enough. He could go long stretches without contemplating death, he said, until the sight of a far-off date or curiosity about some newly proposed legislation would bring into sharp focus the unavoidable reality: His days were limited.

“I mostly read biographies now,” he told me. “Reading about other lives helps me make sense of my own.”

I began to wonder whether the secret to a good death wasn’t looking forward, but peering backward — whether retrospective examination might be more therapeutic than prospective preparation. I thought of how often I’d focused solely on helping patients navigate the future: how many weeks or months of life they might expect, which procedures they should or shouldn’t consider. These discussions, while important, fail to address what research has revealed about the deeper wants and needs of seriously ill patients.

Nearly 20 years ago, a seminal study in the Journal of the American Medical Association explored what patients and doctors feel is most important at the end of life. Many responses were predictable and consistent across groups. Both doctors and patients, for example, thought it was important to maintain dignity, control pain and other symptoms, and have one’s financial affairs in order.

But where physicians and patients diverged is telling — and suggests both a missed opportunity and a path to progress.

Patients were far more likely to express that it was important to feel that their life was complete, to be at peace with God and to help others in some way.

In other words, to feel that their lives mattered.

A growing body of work suggests that a powerful but underused method of creating this sense of mattering is storytelling — reflecting on the past and creating a narrative of one’s life, what it has meant, who you’ve become and why.

Humans are natural story­tellers. We have tremendous power to frame a narrative. The same series of events — becoming a parent, getting a divorce, losing a loved one, finding a job — can be a tale of resilience and restoration or misfortune and regret. The process of bringing coherence to one’s life story is what psychologist Dan McAdams calls creating a “narrative identity.” People get better at identifying important life themes as they age, and those who are able to find the positive amid the negative are generally more satisfied with life.

Physicians are also storytellers by profession. But we’ve traditionally focused on narrating the course of disease instead of helping patients make sense of their lives with it. Creating opportunities for patients to reflect on life experiences, however, could offer an important avenue for healing — whether at the end of life or somewhere in the middle.

In a 2018 study, researchers assigned veterans with post-traumatic stress disorder to engage in either five 30-minute writing sessions in which they reflected on traumatic experiences, or a rigorous 12-week program of cognitive processing therapy (CPT), a first-line treatment for PTSD. The study found that the short writing sessions were just as effective at reducing PTSD symptoms as the resource-intensive CPT program.

Other work suggests that the particulars of storytelling matter. Simply looking back and listing life events doesn’t seem to help. It is the constructing of a narrative — exploring linkages, formulating a plotline — that’s critical for arriving at a coherent sense of self.

And even the pronouns seem to matter.

Using the first-, second- or third-person when reflecting on past experiences can each have strategic advantages. Using the third-person, for example, seems to allow us to better appreciate how we’ve changed over time, while the first-person primes us to look for continuity. Reflecting on challenges by using the generic “you” — “you win some, you lose some” or “what can you do?” — can help create psychological distance from a tough situation and universalize the experience. “I” makes the focus your response; “you” tethers it to the human condition.

When the future is running out, can we make more of the past? I often struggle with my role as a caregiver for patients at the end of life. I know the most healing things I can offer aren’t the things I usually do: pain medications, laxatives, intravenous fluids. Rather, they are at once more challenging and more elementary. To sit. To listen. To explore what it’s all meant.

“I tell myself,” my patient said. “Even if I won’t be around to see it, I helped shape the world of the future. At least my little part of it.”

Complete Article HERE!

Living Well…

Embracing the natural stages of the dying process through hospice care

By Lauren Glendenning

When patients need hospice care, family members and other loved ones often feel overwhelmed with emotion. A caring and supportive hospice team can help alleviate some of these feelings.

We asked Kristine Cooper, executive director of Home Health and Hospice at Memorial Regional Health, to help readers understand more about hospice care at MRH and how it affects patients’ families.

What are some ways that hospice care can relieve stress for those who may be in charge of an elderly loved one?

Kristine Cooper: Hospice really provides support not only to the patient but also to the caregivers. We have nurses that spend time with caregivers, educating them about the disease and dying process. We also have our LCSW (Licensed Clinical Social Worker) who spends time with the patient and caregivers, discussing end-of-life planning. She also works with caregivers and families to address anticipatory grief.

Are there any myths about hospice care you’d like to clarify?

 

One myth would be that hospice hastens death. Hospice really embraces the natural stages of the dying process and neither intends to hasten or prolong death. Our team partners with the patient and family on the journey. Another myth is that hospice is expensive. Medicare actually covers the cost of hospice, including medications to treat symptoms related to the patient’s terminal diagnosis as well equipment needed to care for the patient safely in their home.

Why is it important for families to know about hospice care?

Hospice is not about giving up hope, it’s about refocusing hope. With hospice, there is hope that pain and other symptoms can be managed so that loved ones can live their best life in their final days. Hospice also offers hope to families and caregivers by providing support during this difficult time.

When is hospice care is necessary?

Hospice is here for patients who have been diagnosed with a life limiting or terminal illness with a life expectancy of 6 months or less to live.

What kind of care do hospice patients receive?

Hospice provides nursing, emotional and spiritual support. Hospice can also provide support from physical, occupational and speech therapy with the focus of helping patients move safely. We also have volunteers that can provide companionship and assist with light housekeeping and cooking. All these different services make up the patient’s care team that works closely with their doctor. The overarching theme about hospice is that it is really about what the patient or family needs.

Complete Article HERE!

This is what it’s like to be a death doula

The founder of Going With Grace, Alua Arthur, shares how she found her way into death work and how she manages not to take her work home with her.

Alua Arthur

By Anisa Purbasari Horton

For many people, the thought of being surrounded by death (and have that be a central part of how they earn their living) can seem quite morbid. But for Alua Arthur, the founder of the end-of-life planning service Going With Grace, it feels exactly the opposite.

Arthur is a death doula—also often referred to as a “death midwife.” Arthur’s journey to becoming a death doula is a profoundly personal one, but she represents a number of professionals who are active in the growing “death wellness” and “death-positive” movement. As Fast Company‘s Rina Raphael previously reported, this movement rests on the notion that having a good death is “part of a good life.”

Fast Company recently spoke to Arthur about her motivations for becoming a death doula and how she copes with work-life balance as she helps others through the grieving (and often stressful) administrative process that comes before and after a loved one’s death. The interview has been edited for length and clarity.

Helping people become clear on what death looks like

A death doula is a non-medical professional who provides holistic support for the dying person of the family and the family members. I help the people who are close to death on what it looks like. After that, I help family members deal with their affairs.

I also work with healthy people. The way I conceive it, as soon as someone comes into any recognition that one day they’re going to die, that’s the time to start preparing for that, so I help them with an end-of-life plan. It’s where we write down all the stuff that’s going to be a pain. We get clear for what their desires are for life support, and who’s going to make the decisions for them. We walk through important information and documents, like where’s their birth certificate? Where is their retirement account? Where do they bank? 

I also help people who are terrified of death. I find that people are more afraid of the dying process than death itself, so with them, I do death meditations. This looks like us going through the eventual decline of the body, their systems shutting down, and their breathing becoming ragged. It’s an opportunity for the person to lay there with whatever it is they experienced. A lot of times, people experience a sense of peace after going through this process.

The desire to build a career around death

Growing up, I wanted to be lots of things. I really wanted to be an astronaut. I loved to read and immerse myself in another world. I also wanted to be a conductor. I applied to a music conservatory, but I ended up in a liberal arts school that had an okay music program. I got involved in student government and decided to go to law school. I worked in property law, starting with government benefits, and then I moved to domestic violence and then not-for-profit development. I fumbled around for 10 years and started getting really depressed, so I took a medical leave of absence. That’s how I found death work.

I met a woman in Cuba. She had cancer and was traveling, and we bonded. We spent 14 hours on the bus together, and I asked all the difficult questions. What would be undone in her life if the disease killed her? What does she think happens after she dies? Did she live with the recognition of death constantly? They were questions I never really had myself. That was the first time it hit me that death was very real and that we don’t talk about it enough. It became clear that I wanted to spend my career talking about death.

That was solidified when my brother-in-law got sick and died. It showed me how all the ways that we do it now are broken. We had so many questions—how do we transfer the title for his vehicle, and what should we do with his leftover medication? There was nobody to answer them.

A day in the life of a death doula

A typical day always includes a lot of emails. So many emails. The part of my job that stresses me out is the business part. God, it’s the worst! I need to go back to my vision of helping people feel less alone to keep me in clear focus.

I start my day checking on various things—with the people who are dying, how things were over the course of the night. I’ll also check on plans for any funeral procession. I do a lot of phone calls and talk to therapists who work with people that are dying. If I do have clients that are dying, I see them in the afternoon, or I will see my end-of-life planning clients.

These days, I also do a lot of education around death and dying. I’m doing a lot of talks to reach people about how to do this work because we’re all going to have to do it for somebody in our lives.

When it comes to work-life balance, I do things like meditate daily, exercise regularly, and drink a gallon of water every day. I just got my nails done. I don’t deny myself pretty things.

On death and relationships

I talk about death all the time with my friends and family. I think sometimes I can be a little bit annoying because I want people to be authentic in their decision-making. I tend not to tell people what to say or do, and I listen actively. My best friend and I, we always have challenges because she always wants to tell me what to do. It is a struggle for my friends who have a hard time with the concept of their own mortality, because I’m talking about it all the time.

I don’t push the issue with my friends who are uncomfortable, but with my family members, I do. For my dad, he first had to come around to the idea that I wasn’t going to be practicing law anymore. Being an African parent, he wanted me to be either a lawyer, doctor, or engineer. I was like, how about death? He was like, how about what? That was a little tricky. But eventually, we got around to talking about it. After all, I’m the one who’ll have to deal with it when it happens.

I think people actually want to talk about death, but they feel like they don’t have permission to do so because it’s “heavy.” Well, it’s a regular part of living. Without death we wouldn’t have life. It’s funny: when I meet someone for the first time and I tell them I’m a death doula, so many of them say, “Oh, when x died, I wish that you had been there.”

Complete Article HERE!

How ‘Death Doulas’ Are Helping People at the End of Their Life

They’re changing how we approach end-of-life care.

by Kristen Fischer

To many people, the word “doula” refers to a childbirth coach. But doulas aren’t only available for when life begins — they can help when life ends too.

An end-of-life doula is a nonmedical professional trained to care for a terminally ill person’s physical, emotional, and spiritual needs during the death process. While you may never have heard of this position in the healthcare field, there’s quite a market for “death doulas.”

The role is also referred to as an “end-of-life coach,” “soul midwife,” “death midwife,” or “transition guide.”

Searching for a way for patients to have a “good death” has become increasingly important in the medical community. Last year the medical journal Behavioral Sciences devoted an entire issue to communication over end-of-life issues to ensure patients’ end-of-life wishes were realized.

“In the American culture, where the majority of people die in hospitals, death has been routinely denied, sterilized, and/or removed from view,” said Maureen P. KeeleyTrusted Source. Keeley, who is director of graduate studies at the Department of Communication Studies, Texas State University, wrote in the journalTrusted Source. “Talking about dying with the person that is terminally ill can relieve anxiety for both participants in the conversation, and it can help ensure that final wishes regarding treatment at the end of life are honored.”

Currently there a few organizations that administer credentials for death doulas, including the International End of LifeDoula Association (INELDA), International Doulagivers Institute, and Lifespan Doula Association (LDA).

Jeri Glatter, vice president of INELDA, said her organization has trained about 900 end-of-life doulas in the United States since 2015. The organization provides personal certifications as well as training to hospital staff members including hospice workers. In addition to popularity in the United States, there is a significant interest for training in Asia.

Individuals who seek a personal certification often go on to run their own businesses. An INELDA certification involves attending a training session and then applying for the credential. Several requirements, including hands-on work, must be completed to become certified, which takes the average person six to nine months and is quite rigorous, Glatter said.

Life as a death “doula”

For those who embark on the career, it’s quite a personal choice.

Kelly Sanders, RN, an end-of-life doula from Michigan, worked as a nurse in the long-term care field for many years before becoming a death doula.

“I saw people die without any control over the process,” she recalled. “It seemed as soon as the terminal diagnosis came, the patient became invisible to family and friends. They would talk as if the patient was already gone, even while the patient was in the room.”

She said that hospice cannot provide all of the services a person needs — especially the emotional help — when they have a terminal prognosis.

“Hospice does a great job taking care of the medical aspect of dying, but due to the changing nature of healthcare compensation, little time was left for the other aspects of dying that are just as important for a peaceful passing,” she said. “End-of-life doula services fit that need.”

She said there is a big misconception that hospice provides the same services as a death doula.

“I think it was the overall idea of hospice, but because of Medicare/Medicaid cuts, hospice only has time to deal with the medical needs. They do not have the training to even do the work of a doula.”

Death doulas can fill a gap in care. People can work with a death doula before they reach a point where they qualify for hospice. And an end-of-life doula is able to devote themselves to a single person, going in without an agenda to fulfill that person’s needs.

What a doula does

Sanders said a huge part of the job is to establish trust and build a relationship with patients and their families. It’s important to respect their wishes and not influence their decisions, she said.

As part of her services for Peaceful Journey Home, LLC, Sanders is often asked to take family photos or assist patients in writing letters to ask for forgiveness. Some patients hire her to plan their funerals.

“The more time that you have with a person, the more you learn and it is easier to learn their life story and advocate for their wishes,” she said. Sanders said it’s important to be flexible during the process. When she notes a patient’s wishes and they change, she gently reminds them of their initial preferences but allows them to change their minds.

“It is their death, so they can certainly have the right to change focus,” she said. “Sometimes we don’t always know what we want, and we mold the idea as we go along.”

Some family members rely on the doula to remain present and keep them informed on the patient’s status while they take a much-needed break.

A death doula can also answer questions about the dying process and empower family members to create the kind of environment that the person dying has requested, said Christy Marek, an end-of-life doula from Minnesota who sees patients locally and offers her services via phone and video conference.

“We help family feel competent and central to the process and less afraid of the unknown,” Marek said. “It is a true partnership, and I think that’s the best support we offer for families — assuring them they are not alone.”

Typical services include helping patients create legacy projects or planning a person’s final days and moments. Mostly, Marek said she focuses on creating a safe space for clients to do the emotional and “soul” work needed to help them prepare for their death.

“I help the individual who is dying to stay close to what is most important in the time that remains, to focus on what is possible rather than on limitation, and to support their loved ones in staying as involved as desired as things progress,” Marek said.

One of the biggest advantages of having an end-of-life doula is the continuity of care and consistent support. Patients often transition from actively seeking curative treatment to no longer receiving treatment. Some are put in hospice, and some “graduate” from hospice before their death, Marek explained.

“These are all circumstances where care teams change and support systems get disrupted and lost. Having an end-of-life doula throughout the process of end of life ensures that there is a consistent supportive foundation that remains the same,” Marek said.

Family ties can help lead to a ‘good death’

Sanders said it is best when family members are actively involved with the doula to respect the patient’s wishes.

“I try to encourage and engage families to participate in the process, especially if they are not in agreement with the process,” she said. “All input is valuable, but I like to politely remind families that this is not their death. So, the dying person’s wishes and needs come first.”

“Many times, a patient is not able to articulate their wishes, such as cases of dementia, but the patient still deserves a lasting tribute,” Sanders said.

Marek said her goal is to serve the patient even if they forget they hired her, don’t remember what they initially asked for, or have different wishes than family members.

She said her ultimate goal is to get what the patient wants — even if she is hired by family members.

Aside from bedside manner, death doulas have to run their business. Their services might be too costly for some patients, and insurance is unlikely to cover their work.

Sanders said an individual package may cover 20 hours for $700 plus an additional fee if the patient wants more time with the doula.

Marek said that prices typically are flexible and can include a weekly or monthly retainer or individual sessions and packages. An end-of-life vigil, which takes place during the active dying process, can range from $1,500 to $3,500 or so.

Leaning ‘into’ the fear

Anyone who is struggling with their diagnosis or wants to leave something behind for family, may want to seek out a death doula.

Sanders loves her job but admits that it’s hard when a patient passes away. “That part never gets easy,” she said. “I take comfort that I was able to help them transition on their terms.”

“Our culture holds so much fear around death that when we find ourselves face-to-face with it, either our own mortality or that of someone we love, we typically don’t know what to do,” Marek added. “It’s incredibly scary to face into the unknown, so most of us do our best not to.”

But Marek said ignoring real life can be harmful.

“It affects not only the person who is dying, but the entire circle that surrounds them,” Marek said.

The presence of an end-of-life doula helps people “lean into” the pain and fear of the unknown. That frees up space and energy so they can experience the emotions including actual joys that come with death. She said the doula’s experience helping others through death can ease the process for both family and patient.

“The comforting presence of a doula enables opportunities for the dying to connect more deeply with loved ones and to enjoy the time that remains, focusing on possibility rather than only on limitation, on what they can control rather than on what they can’t,” Marek said.

She said she believes that many people would benefit from having an end-of-life doula because they can help foster connections even during an emotionally painful time.

“I believe a death doula — the openhearted presence of someone who won’t turn away in the face of suffering and will offer support to help us work with it rather than fight against it — would benefit everyone at end of life.”

Complete Article HERE!

It’s important to think about our own mortality if we want a good death

Australian oncologist Ranjana Srivastava says: In order to die a good death, it helps to have lived a good life. And a good life must involve contemplating one’s own mortality.

By Sally Pryor

It’s a circular philosophy that, as it happens, doesn’t feature nearly enough in the average person’s thinking, at least not in secular Australia. But for oncologist Ranjana Srivastava, living and dying are completely intertwined, and it’s those patients who are able to accept their own death – inevitable, albeit often untimely – who have inspired her to contemplate what it means to die well.

It’s a question, she says, that many doctors don’t manage to properly consider. The medical profession is focused largely on treating illness and making patients better.

“As I have matured as a doctor and became an oncologist, I have been very struck how there seems to be very little place – or no place, sometimes – in our day to talk about dying, let alone dying well, but simply dying,” she says.

And yet her work involves dealing, daily, with dying patients, often caught up in the complexities of the medical system, at sea when it comes to dealing with what happens next. From the young woman, unable to work and far away from her family, to the 80-year-old man, refusing to accept an end point when it comes to treatment that isn’t working, Srivastava can see all the ways that our society – focused primarily in succeeding and moving forward – leaves little room for contemplation.

Srivastava has been writing, compulsively, since childhood, but it was relatively early in her medical career that she realised the power of story-telling, of human narrative, in allowing her to empathise with her patients, and to do her job properly.

“I’m incredibly aware that no matter how ambitious you are as a doctor, you can only do so much, so that’s why a lot of my public writing and thinking has been devoted around how do we empower everyone else, and how do you not just talk to doctors, but how do you go around doctors and talk to people and patients?” she says.

Her latest book, A Better Death, is a meditation on all the different ways in which death, and our awareness, can give meaning to our lives, even without a terminal illness.

“I guess I saw from an early age that what resonated with me, even as a trainee doctor or even going back as medical student, was someone’s story, because you could present a sterile case,” she says.

We’re sitting in a bustling Melbourne cafe, amid a noisy Saturday morning brunch crowd. On the face of it, it’s a jarring setting in which to nut out the concept of death, but Srivastava has a tranquility about her – a calm and blessed kind of reason – that makes you think she’d be the perfect person to have to deliver bad news, and to guide someone through the process of dealing with a terminal diagnosis. Those familiar with her writing – she is a regular columnist in The Guardian – will know that her commentary often starts with the story of an individual. It’s these personal stories that often drive the point home more vividly than any textbook.

“When I began writing, I thought, well how do I convey what I feel without illustrating why?” she says.

“And I continue to think that the way we empower people and the way we educate people is through letting them get a glimpse of themselves in each of those patients.”

One of the most important lessons she has learned is that everyone has the ability to control the way they die, through the way they choose to live out their last days. The many stories in A Better Death bear this out in different ways, but all with the same ultimate conclusion: if we could all live knowing that we will one day die, our lives will have more meaning, and we will be more motivated to leave some kind of legacy. Insisting on further treatment, even when it has become futile, or refusing to make arrangements for family and help them plan for the future, can make dying well impossible. But how individuals respond to dying has as much to do with society’s fear of morbidity, of talking about death, as with the individual.

“I absolutely think we have control over it, but the more I work, I think that it needs to be almost a societally determined thing,” she says.

“I think it’s very difficult for an individual to do this on their own, because there are so many forces. I will see this, where one of my patients will say, ‘I think I’m ready to just go peacefully, to stop treatment, to focus on being outside on a day like this and enjoying the gardens’, and someone else, who has not come to terms with their mortality but someone close to that patient, will have a different view. And I think it’s always easy to get taken in by that, and I think our medical system makes it very difficult to call it a day.”

Ultimately, she says, dying without a sense of peace is costly, both to the individual, and to society at large.

“There is an enormous cost to the family and to survivors, and this borne out by research and evidence, and then there is the cost to the taxpayer and society, so at every level there are serious costs,” she says.

“I think it’s driven both by patients and doctors, I would say, I don’t think every doctor is pushing patients to have more treatment, to not adopt palliative care, to not think about quality of life, I don’t think it’s as binary as that, and I think it goes back to the kind of society we are. There’s a lot of instant gratification in life – you want something, you get it. You see something, you can buy it, and health literacy is low in general. So I think people genuinely have trouble believing that many chronic illnesses and terminal illnesses cannot be reversed, and are not curable.

“We all have to ask this question of ourselves as to how we are going to contemplate our mortality and not just leave it to our doctors.”

And yet, she says, her work – and the world in general – is filled with examples of hope. While she is “continually astonished” by the number of elderly patients who, when asked, say they have never thought about dying, she is often consoled by examples of people who have thought the whole thing through.

“Just in the news I was listening to Bob Hawke’s widow speak about his death, and one of the things she said that quite struck me was Bob felt he had nothing else that he wanted to do – he was ready,” she says.

“And I thought, here is a man who has soared to the heights of accomplishment, and somehow he has managed to step back and back every year and every decade, until he has reached a point where he says, I have done what I need to do… I found that remarkable, and that’s why there is so much peace associated with him – he lived to a good age, he was able to live well, but he was able to articulate to the family left behind that he was ready to go, and I think it’s very consoling.”

How does she think she will come to deal with her own mortality?

“That’s a really good question. I would like to think that a career in oncology will not have been wasted when it comes to my contemplating my own mortality,” she says. “The reason I could never be sure about this is that I see how people can change when they are ill. It’s very difficult to be over-confident about how you would be when you are sick, when you are speaking about it when you are well. It’s something that each of us has to experience for ourselves. But I do feel that I am more blessed than most in having a lot of good teachers.”

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