‘I’m a friend at the end – why I became a death doula’

Hilary Pepiette is an end-of-life doula

When a loved one dies, it is often medical staff, a hospice and an undertaker who deal with the final moments.

But families can now bring them back into the home, engaging an end-of-life doula to take care of the last wishes and arrangements for their loved ones.

Hilary Pepiette, a solicitor, is one of Scotland’s first end-of-life doulas.

She thinks there is a great need for her role as a “friend at the end”.

Hilary told BBC Radio Scotland’s Kaye Adams programme: “An end of life doula is someone who supports and walks alongside a dying person, the family and people close to that person, through the dying process, through the death and sometimes after that.

“The doula is your consistent flexible presence to fill in the gaps and give support emotionally, spiritually and practically in whatever way it is needed for each individual person and your family.”

Hilary believes we have handed over control to the professionals.

She said: “I have seen family members who have died and I think there is a feeling for me that I would love to do more and make sure that people can have the best possible death they can have, and to celebrate life.

“It is about making sure people live their life to the absolute fullest potential as long as they possibly can, and celebrate that, and then help them have the death that they want to have, give them come control over that.

“My mum died at home and while we did the best we could and it was a good death.”

Death is a taboo

But she added: “I wish I knew then what I do now about what was going on for her at that time.

“It’s only in the past 100 years or so that people have stopped caring for their dying family members at home and it all became about hospitals and the medical profession.

“Death has become a taboo and something that people have stopped talking about. But the more we are open about it the better. Being with someone and having those final conversations is so rewarding.”

Hilary thinks people can talk about their end of life wishes more easily with someone who is not family

As a solicitor in Edinburgh, Hilary processed wills and personal business. She decided to take her end-of-life services one step further.

She said: “It felt natural. I have been a private client solicitor for more than 20 years, and through that I have worked with a lot of people planning wills, powers of attorney and advanced medical directives to help them think about and plan for the end of their life.

“It seemed like a natural progression to me to take that one step further and think about what happens after the legal documents have been put in place.”

Hilary’s firm BTO, is the first to offer an end-of-life doula as part of its services.

What does an end-of-life doula do?

A doula will talk and listen to the patient’s wishes and hopes for the way they will die

According to Hilary: “I do things from washing dishes or making their dinner or cutting someone’s nails or feeding them at the end of their life. Also providing the personal care that might be provided in a hospice.

“Also talking. There is a big role for conversation here where it can be really hard within a family to have the difficult conversations about what you want the very end of your life to be like, where do you want to be when you die, who do you want to be there. Do you want music playing?

“It is establishing what the biggest hopes and fears are. What are you most afraid of? Is it pain or losing control of autonomy, of making decisions. Having those conversations is a big part a doula can play.

“Some people are never comfortable talking about it. But most people who are given that opportunity and a safe place to do that are happy to do that and have those conversations.”

Someone who agrees with Hilary is Prof Dame Sue Black, forensic anthropologist and vice chancellor for engagement at Lancaster University, wants death to be celebrated more.

She told Kaye Adams: “It is an inevitability, it is going to happen. What we can’t control is how it happens.

“In the past that would have often been done by family. I think we have become scared of death, we don’t want to admit it exists.”

Prof Black was awarded a Damehood in 2016

Prof Black thinks people have been conditioned to believe in a certain way of doing things.

She said: “People tend to accept there are rules we have to abide by but generally there aren’t. It’s important those left behind feel they have the autonomy to respect the person they have lost in a way that helps them with their grief.

“We think a funeral has to be very specific in that it has to have hymns and speaking, and it doesn’t. We need to have a confidence that those who are left behind have control over the celebration of the person who has been lost.”

She also thinks people should not be afraid of the last moments and to make the most of them.

She said: “I think we forget sometimes when patients are advancing towards the end of life that we think they are not listening and don’t communicate.

“There is some research that suggests the last sense to go may well be hearing so that’s the time we need to tell them how much we love them, how much we care, what a difference they’ve made.

“One of the last things we can do is communicate.”

Complete Article HERE!

The cost of not talking about death to dying patients

Will you know when it is your time to die? It is a question that has permeated my mind since July 14, 2017. This was the day my mother died. It was a sad day, but it pales in comparison to the months preceding it. A breast cancer that had returned aggressively, a hasty port placement to receive chemotherapy that was too late  and an ICU admission that began many futile interventions that never saved her life, but prolonged my mother’s suffering.

As a registered nurse, I watched a scene unfold that I swore to myself I would never let happen to anyone I loved. Yet, there I was listening to an oncologist discuss a 30 percent chance she would respond to chemo (which did not mean she would be cured) and choosing this inappropriate treatment for my critically-ill mother. I was party to these decisions when my mother couldn’t make them and when she made some recovery in her mental status, she also chose to continue treatments.

Were these decisions well founded? They were missing a key piece of information, that even with my training, I failed to see. My mother was dying. She was dying and none of my mother’s care providers were able to say those words.

Would my family have chosen a different path for my mother, if there had been a more explicit conversation? Resoundingly, yes. If my mother’s health-care providers would have had a deliberate discussion about her impending death my family would never have chosen chemotherapy and instead chose to initiate hospice care.

As a nurse, I have a duty to advocate for patients. Advocating can take many forms, but most often, it is helping patients navigate the complexities of the health-care system as well as explaining the meaning of test results, procedures, and diagnoses. Often, answering the question “What does this mean for me?” In my own practice, I have helped many patients understand the life changes needed to manage, diabetes, heart failure, and coronary artery disease.

But, like the nurses who provided care for my mother, I struggle having explicit conversations about dying with my patients. This does not appear to be an isolated phenomenon. In a 2018 study, researchers in Australia surveyed acute care and critical care nurses to assess their understanding and utilization of end-of-life discussions and care planning. They found that nurses’ own knowledge and rates of participation are low when it comes to end-of-life care.

On the other side of this, is a patient who may not be making a well-informed decision, because they don’t understand their disease is life-limiting or that they are dying. When the focus is shifted from “fighting to live” to “death is imminent,” other care decisions can be made by these patients. They can choose hospice care. Patients who have a prognosis of 6 months or less are eligible.

In hospice, care is shifted from procedures, tests and medications that can cause discomfort or pain for the patient, to comfort measures that improve the quality of one’s last days. Medicare, who pays for this benefit, found that only 12-25 percent of beneficiaries’ days during the last year of life are being spent in hospice. Are we having these conversations with our patients too late? I have coordinated and provided care for patients who only hours before their death have been enrolled in hospice, even though their diagnosis had been terminal and had been known by the patient’s providers for months.

To be sure, there are nurses who are adept at having these difficult discussions about death with patients and their families. But it is not a skill that comes easy to the majority of the profession. Fortunately, there are resources available to help nurses facilitate these conversations in an effective way.

The End-of-Life Nursing Education Consortium (ELNEC) project, for example, is a national education initiative that seeks to educate nurses on better end-of-life care. Their curriculum includes coursework on how to lead effective communication during end-of-life care.  

Perhaps, we need to re-evaluate how we train our nurses to have conversations about death and dying. Have those who are experts at these discussions share their wisdom and teach nurses how to have these conversations in an empathetic and impactful way so that patients can receive the comfort and dignity of hospice care in a timely manner. If we can make these changes in our communication with patients and their families, perhaps, one day we will all know when it is our time to die.

Complete Article HERE!

When Patients Can’t Be Cured:

Mass. Med Schools Teaching More End-Of-Life Care

By Kathleen Burge

On the second day of her geriatrics rotation, Jayme Mendelsohn buckles herself into the back seat of her professor’s blue minivan and rides south from the Boston University School of Medicine toward the house of a patient who cannot be cured.

As they drive through Roxbury, Dorchester and Mattapan, the professor, Dr. Megan Young, briefs Mendelsohn and another medical student about the elderly woman: She is 98, and diabetic, with increasing dementia.

She struggles to walk even a few steps, and can no longer make her way down the long cement stairway to her driveway. She has been housebound for nearly two years, and has a beloved dog who climbs up on her bed.

Young could have ordered tests, requiring hospital visits, to figure out why the patient had trouble walking. But that wasn’t what the woman wanted. “Really, what she wants to do is stay home and work on her word puzzles and not go to doctors’ appointments,” Young tells the students.

In her first three years of medical school, Mendelsohn studied blood and bones, cancer and heart failure and diabetes, learning to fix the many ways a human body can falter and break. But now she and the other fourth-year student, Nirupama Vellanki, are learning how to be doctors in a new age in health care, as clinicians increasingly grapple with how medicine can help patients with incurable illnesses.

Last year, all four medical schools in Massachusetts agreed to work together to improve the way they teach students to care for seriously ill patients, especially near the end of life. This fall, the schools are gathering data on what students are currently learning about end-of-life care, and some are beginning to change the way they teach.

Students at UMass Medical School are learning to treat gravely ill patients in the school’s simulation lab, examining “patients” — paid actors — and talking to them and their “relatives” about their worsening illnesses.

At Harvard Medical School, professors also hope to add lessons about end-of-life wishes to the school’s simulated teaching sessions.

At BU, students are visiting patients with a hospice nurse for the first time this year. Fourth-year students like Mendelsohn and Vellanki will be questioned on the principles of palliative care — a medical specialty that seeks to improve seriously ill patients’ quality of life — that they’ve learned on rotations like Young’s, part of the effort to measure what they’re learning.

“We are taught to solve problems, fix them and move on,” Mendelsohn says. “But that is not the answer all the time.”

In the United States, the richest country in the world, many of us live poorly at the end of our lives. We don’t talk enough with our doctors about what we want — what’s important to us — if we become seriously ill and cannot be cured. For instance, although most of us say we want to die at home, only about one-fourth of us do. And doctors have traditionally been given little training in how to talk with ill patients about dying.

“There’s a lot to be proud of in modern medicine,” says Dr. Jennifer Reidy, chief of the palliative care division at UMass Memorial Medical Center and an associate professor at UMass Medical School. “But there is a bit of a steamroller effect sometimes in health care. There is a momentum towards doing more because we can, and we know how to do it.”

The new end-of-life training for medical students grew from the Massachusetts Coalition for Serious Illness Care, a group created in 2016. Surgeon and writer Atul Gawande, one of the coalition’s co-founders, asked Harris Berman, dean of the Tufts University School of Medicine, if he would bring together the state’s medical schools to improve training in palliative care.

The other deans agreed. All of the schools had some teaching on palliative care, but believed they could do better.

“If we’re not teaching it, if we’re not testing it, the message is that it’s not part of their job,” says Kristen Schaefer, an assistant professor of medicine at Harvard Medical School. Instead, the professors at the four medical schools want to teach students early on how to help gravely ill patients, she said, so they understand: “This is part of what it means to be a doctor.”

The schools won’t adopt the same curricula — the medical schools vary in size, budget and curriculum — but they will train students in five basic elements of palliative care. Patients do not have to be dying to receive palliative care, which can start anytime after diagnosis, including during treatment.

Learning how to talk to seriously ill patients and their families lies at the heart of the curriculum changes. Students will be taught how to discuss not only the science of their patients’ illnesses but also their patients’ wishes and values, and help them create plans for treatment.

“These are extremely challenging conversations,” says UMass Medical’s Reidy. “They’re very emotional. There is a framework, a cognitive map, but ultimately it’s [like] jazz. It’s whatever’s in the moment.”

Students will be taught to anticipate strong emotions and how to talk to patients who are deeply sad or angry.

“Students are afraid that they’re going to say something wrong that could hurt patients and families,” says Schaefer, also a palliative care doctor at Dana-Farber Cancer Institute. “They feel worried that they’re going to cry themselves, that they’re not going to know what to do.”

The medical schools also hope to head off burnout, a serious problem for doctors, by teaching students to pay attention to their own emotions, and relaying coping strategies for working with dying patients.

‘Create A Good Death’

Young’s patient, Ellen “Nellie” White, lives in Hyde Park with her daughter, Christine. Young, a home care physician at Boston Medical Center, began treating her a year ago.

“So Mom, this is the doctor I told you about coming today,” Christine says, opening the door to her mother’s bedroom, just off the kitchen. Young and the two students trail behind her.

Ellen White, born nearly 99 years ago in Ireland, sits on an easy chair with a green crocheted blanket across her legs. Her gray hair is cut short. Her daughter moves a book of word puzzles from her mother’s lap onto a table.

White squints up at her visitors. “Let me put on my glasses so I can see you,” she says.

“My name is Jayme,” Mendelsohn says loudly, so White can hear her. “I want to know how you’re feeling today.”

“I’m feeling fine, thank God,” White says. “I have no complaints.”

“Is anything bothering you?”

“Nope.”

Mendelsohn asks her a few more questions. She turns to her professor.

“Dr. Young, is there anything else you want us to specifically chat about today?” she asks.

Young asks her to check White’s blood pressure and listen to her heart and lungs.

White’s blood pressure is excellent. Mendelsohn takes off her watch.

“Let me just check your pulse,” she says.

She lays a finger across White’s wrist and gazes at her watch.

“Am I alive?” White asks.

Mendelsohn, counting, doesn’t answer. A few seconds later, she tells Young the pulse is a little more than 100 beats per minute.

“You’re alive!” Young tells White.

“That’s good to know,” she says.

Vellanki gives White a flu shot. The doctor and students leave the house. Afterward, the medical students say these visits help them learn different purposes of medicine.

“It can be really important for a medical student to have that moment where your job right now is not to write 15 different notes and to do all these different things and to solve their hypertension,” Mendelsohn says. “Your job is to talk to the patient and see what they need. … There are lots of times in medicine where you can’t solve the problem because the problem is bigger than medicine.”

Vellanki says she’s learning that doctors can still help patients at the end of their lives.

“I think you can’t solve the problem of dying but you can create a good death,” she says. “And that’s something that I don’t remember being taught much in med school.”

Complete Article HERE!

Don’t Lie About Dying Patients’ Pain

— Because sometimes, yes, they suffered

by Judy Melinek MD

The trucker was making a delivery to a factory. While working out of the back of his rig, he ended up on the wrong side of a machine loader. The loader’s arm hit him, lifted him up, pushed him against a metal barrier, and crushed his chest. When the ambulance arrived at the emergency room, the trucker was in pain, slipping in and out of consciousness. The CT scan showed cardiac tamponade — bleeding in the sac around the heart — and he was rushed to surgery. The surgeon made a note that his patient was grimacing in agony in the elevator on the way to the operating room. The loader arm’s blow had essentially sheared the inferior vena cava — the biggest vein in the body — off his heart. The surgeons were successful in sewing it back together, but the trucker had lost so much blood that his major organs were beginning to shut down. He hung on for a week, in a drug-induced coma, on a ventilator in the intensive care unit. When his family came to visit, hospital staff would adjust the trucker’s medications down to allow him to tap out some tunes on a board, or squeeze their hands in response to questions. They were grateful that he was responsive, that he recognized them. They held out hope for his recovery. But the trucker had multiple broken ribs and a crushed sternum, and his organs were dying inside him. Nobody wanted to tell his wife and sons how much pain he was in. Nobody wanted to tell them he was dying.

I didn’t do the autopsy. I was brought in much later, to review the case and answer one simple question: Did this man suffer? In lawsuits that arise from industrial accidents, large financial penalties apply to those found responsible for preventable deaths that involve conscious pain and suffering. A forensic pathology expert witness can make postmortem diagnosis of terrible events — such as, in the trucker’s case, bone-crushing injury, battered internal organs, and ruptured vital structures — by reviewing the medical records and the autopsy findings. We can also examine the brain for signs of damage that would indicate that the decedent must have been rendered unconscious — and therefore, perhaps, did not suffer the effects of those agonizing injuries as a fully-conscious person would.

When I was a young doctor right out of autopsy training and would call the next of kin of the recently deceased, the question I feared facing the most was, “Did he suffer?” Everyone wants assurance that their loved one’s death was quick and painless. How should I answer that question when that death was, like the trucker’s, slow and awful?

I used to lie about it. There were times that I would tell the next of kin that their loved one’s death was instantaneous and pain-free, even when I knew from the autopsy that the death had been a bad one. I thought I was doing the right thing, the merciful thing — sparing those poor people the psychic agony of knowing that their loved one suffered in death.

But then I was called for the first time to testify in court on the conscious pain and suffering of one of my cases. I was placed under oath and sworn to tell the truth. I looked out from behind the stand at the decedent’s family sitting in the gallery, and panicked. Had I lied to those people, assured them that the body I had autopsied showed all the signs of having died, peacefully, in the blink of an eye? And if I had done that, how would they react now, when I would testify to the truth, and they would hear, for the first time, about the agony their loved one suffered?

We doctors start our careers with an oath to “first, do not harm.” Then, in court, we take an oath “to tell the truth, the whole truth, and nothing but the truth.” What if these oaths conflict? What if doctors, in an attempt to comfort a grieving family, actually give them false information that can later cost them the financial benefits that they deserve from a legal decision over their loved ones’ conscious pain and suffering?

Tell the truth. It’s a hard choice, but the only one that a doctor — any doctor — can make. If you are a clinician treating patients, their loved ones deserve to know the true nature of their pain, and also everything you are doing to make it better. Talk to the families about patient pain. Document your findings about patient pain. You aren’t helping anyone by hiding it. You might even be doing harm.

Complete Article HERE!

Doctors and the D Word:

Talking About Death Is an Essential Skill — and One Often Lacking

By

The vast majority of physicians enter medicine because they want to help people, so it’s not necessarily surprising that many are uncomfortable discussing death with their patients. However, when that discomfort reaches so far as to prevent conversations that patients need and want to have, it’s a problem, experts say. 

A physician’s discomfort with talking about death can go as far as avoiding the word itself, says Helen Stanton Chapple, PhD, RN, an associate professor at the Creighton University Center for Health Policy and Ethics and College of Nursing in Omaha, Nebraska. Although she’s been out of clinical practice for about a decade, Dr Chapple recalls the euphemisms many providers used to avoid the subject.

Dr Chapple explained that the closest she’s heard physicians come to acknowledging that a patient is dying is saying that, “the illness is not survivable,” she told Medical Bag. “Part of it is that they don’t get any training, part of it is that they don’t see it modeled when coming up in residency training, and part of it is that they dislike trying to tell the future. That’s a problem.”

Fortunately, things are beginning to change in terms of the training and education physicians receive. The Palliative Care and Hospice Education and Training Act (PCHETA, H.R. 1676), introduced to Congress by Representative Eliot Engel in 2017, for example, proposes amending the Public Health Service Act to beef up support for palliative care, including training for healthcare professionals.

“It’s still widely variable at different medical schools and institutions, but I think it’s becoming much more accepted that this is part of the basic skills a physician needs,” said J. Randall Curtis, MD, MPH, a professor of medicine and director of the Cambia Palliative Care Center of Excellence at University of Washington School of Medicine in Seattle.

“More and more medical students and physician are being trained in giving bad news and how to have these conversations,” Dr Curtis told Medical Bag. “But it doesn’t make these conversations easy. You’re working with a patient, and you have to give them bad news. It’s hard even if you’re trained and good at it.”

And change is slow, says Lori Bishop, RN, MHA, vice president of palliative and advanced care at the National Hospice & Palliative Care Organization in Alexandria, Virginia.

“I think there’s a concern or perception that some of these conversations could reduce hope or take away hope,” Ms Bishop told Medical Bag. Research suggests the opposite, she adds. “People with serious illness are really expecting to have these conversations and want to have them, but they’re waiting for the doctor to initiate that conversation, so sometimes it doesn’t happen.”

Interestingly, clinicians perceive difficulties with patient and family responses as bigger barriers to these discussions than their own skills and limitations, but patient research does not quite jibe with those findings.1

A small, qualitative study published in 2015 found that “many participants were very comfortable talking about their own death.”2 The authors concluded, “Being able to talk about end-of-life wishes and know how to support people who are dying or bereaved are important to many people, and they would welcome interventions to facilitate this at a societal level.”

It’s not just patients waiting for the physician to take the first step. Providers across the medical profession tend to believe that physicians should lead the discussion, both because of their medical training and because of their ability to answer clarifying questions about the patient’s prognosis, suggests a 2016 qualitative study in the American Journal of Hospice and Palliative Care.3

Broaching the topic as early as reasonably possible also gives patients more time, information, and opportunity to make the decisions they want based on their values and their place in life, Ms Bishop added.

“I may choose a different path once I start a conversation if I know what my risks are and where I’m at in the trajectory in a disease,” Ms Bishop said. “You miss an opportunity for some pretty rich discussions when you don’t have these conversations. It’s not just a medical conversation. It’s really in context of that whole individual and where they’re at in their life and what matters to them.”

Why Doctors Delay

The reasons for physicians’ discomfort with conversations about dying are as much cultural, social, and systemic as they are personal, Dr Chapple told Medical Bag. The health care system is set up in such a way that necessary changes in a care plan do not always keep pace with changes in a patient’s condition, particularly if those changes occur overnight or on weekends when the primary medical team is off. It’s attending physicians who make the decisions, not the nurses or residents who may see the patient — and their deterioration — more frequently.

“Part of it is nurses having to witness and inflict the suffering and getting sick of it when they think there’s no good outcome,” Dr Chapple said. “They become like a Greek chorus, commenting to each other and to individual residents, but the attending physicians make the decisions and have their own reasons.”

A Dutch research project4 found the biggest reasons for delaying conversations about a patient’s death were “timing (when is the right moment?), reserve (because of the potential emotional despair of the patient), and hope (who am I to rob a patient of their hope?).”4

Nurses may develop a better sense than doctors for some of these answers because they are the ones implementing interventions, Dr Chapple added.

“They’re hanging the IVs, putting the machines on, monitoring the patient and doing all this stuff, so I think they have a sense of when there’s no resilience left,” Chapple told Medical Bag. “So the nurses are looking at the big picture, and the physicians are trying to tweak each complication.”

That tweaking mindset often begins from the first conversation, when a physician tells the patient about a terminal diagnosis but hardly before launching into the treatments they can offer.

“There’s a way of telling that doesn’t let you deal with the existential reality of it and instead moves you immediately into the steps you’re going to take,” Dr Chapple said. She noted that some research has shown that patients are surprised when they learn their treatments were never intended to be curative, even if they were told.

Physicians’ discomfort with discussing death may also arise from differences in patients’ ethnicity or faith. A 2015 study published in PLOS One surveyed more than 1000 physicians and found that 86% rated it “a great deal” or “quite a bit” challenging to discuss death with patients of a different ethnicity.5 In a 2016 study published in the American Journal of Hospice and Palliative Care, providers (albeit mostly nurses) rated conducting a spiritual history with patients as particularly difficult.6

A 2016 systematic review of the research lends credence to all of these reasons: “Recurrent themes within the literature related to a lack of education and training, difficulty in prognostication, cultural differences, and perceived reluctance of the patient or family,” the authors wrote.7

The problem, however, is more complex and far reaching than even those reasons, going deep into the heart of who we are as Americans, the way our healthcare system is set up, and how a big part of the economy’s growth relies on technology, Dr Chapple told Medical Bag.

“In the United States, it’s all tied up together with the idea that if we’re not living and growing and using technology to gain our salvation, there’s something wrong with us, that we have to fight, fight, fight, against death,” Dr Chapple said. “There is something about our culture and what we find acceptable and desirable that’s given us the terrible healthcare we have, that spends most of its money rescuing people from death and stabilizing them and spending so much less money on prevention and universal access to healthcare.”

While that perspective is expansive, reaching toward larger philosophical ideas regarding how our culture thinks about death, it also contains a key to learning to grapple with those conversations, Dr Chapple suggested.

How to Become Better at Talking About Death

“What palliative care people tell me is that the conversation is not difficult,” Dr Chapple said. “Part of what would be helpful is for a physician to think through for themselves what their own thoughts are about dying. What are your own fears, what is the unresolved grief you have about people you’ve lost in your life? Maybe that’s part of the internal work physicians have to do for themselves.”

Physicians who find that difficult may look for triggers they can rely on, such as initiating end-of-life care conversations when a patient reaches a certain age, or when a specific development occurs in a person’s progression of a chronic disease.

An extensive 2001 qualitative study identified 6 areas particularly important for physicians to consider in talking with dying patients8: “talking with patients in an honest and straightforward way, being willing to talk about dying, giving bad news in a sensitive way, listening to patients, encouraging questions from patients, and being sensitive to when patients are ready to talk about death,” the researchers wrote.

As with any skill, the secret to improving isn’t really a secret: practice, practice, practice.

“Practicing the conversation is the only way to get better at it and hone that skill,” Ms Bishop noted. “Some physicians have had access to training where they can role play with a mentor or with someone who has that skill set and get feedback on what they may want to do differently.”

Ms Bishop suggests starting these conversations by asking patients what’s important to them at this point in their life and how they feel things are going — and then listening.

“You get a lot of insight into what a person already knows about what their issues are or you may be surprised and find out what matters to them is not at all what you think it is as a clinician,” she added. “It just makes for holistic care when you have the conversations.”

But again, becoming more skilled with these conversations certainly doesn’t make them more pleasant.

“The goal of training is not to make it easy and fun,” Dr Curtis told Medical Bag. “Physicians by and large go into medicine to help people and make people feel better. To be in this position where you have to give bad news is difficult, but it is important, and being trained allows you to do it well and work with that discomfort.”

It’s also an ongoing conversation because people at different stages of life will change their opinions about what they want as circumstances or the disease itself change, she adds.

“We’re all going to die. For anyone who’s in the medical profession, there’s a certain subset of their patients who will die,” Ms Bishop said. “You can ease that burden if you start to have those conversations when someone is well and continue those conversations as the disease progresses.”

For physicians who are interested in brushing up on their communication skills in the face of bad news, there are a number of available resources, including VITALtalk and the Association for Death Education and Counseling. A list of organizations who provide assistance and information on multiple topics related to trauma, grief, dying, and death can be found here.

Complete Article HERE!

Being Mortal

FRONTLINE follows renowned New Yorker writer and Boston surgeon Atul Gawande as he explores the relationships doctors have with patients who are nearing the end of life. The film investigates the practice of caring for the dying, and shows how doctors are often remarkably untrained, ill-suited and uncomfortable talking about chronic illness and death with their patients.

What is a Death Doula?

by

Do you know what a death doula is?

If you would have asked me or many of the women I work and study with that question a few years ago, most of us would have been stumped. However, since then, we’ve all taken the plunge into this previously obscure line of death work.

I heard my death doula call in 2017, soon after I decided to leave mortuary school. Thankfully, before I quit the program’s classwork, I had the opportunity to interview a local death midwife about her work. Her desire to educate the public about death and death planning inspired me to look into the field.

After a year or so of research, I was gifted entrance into Quality of Life Care’s online death doula mentoring certificate program from my parents. Since starting the program, I created Gather the Leaves LLC, an end-of-life care business that serves pets and people.

I also had the opportunity to interview two women who practice in the alternative end-of-life field. Read on to discover what we do.

Hearing the call

Deanna Cochran

Registered nurse, end-of-life doula, mentor and educator, and founder of Quality of Life Care, LLC

When Deanna Cochran’s mom was diagnosed with gastrointestinal cancer, she was distraught for two reasons: Cochran was upset because her mother was very ill; and as a hospice nurse, Cochran had insider knowledge about the disease.

Cochran knew that the people who came into her care over the years experienced a lot of suffering before receiving hospice care. “This fear was in me with my mom,” Cochran says.

“I thought, ‘holy cow… I know what people deal with before they get to hospice; [and] my mom doesn’t want to be on hospice.’”

Cochran knew her mother was going to die, that her mother did not want to die, but that death was inevitable. So, Cochran implemented a unique care program.

Cochran did everything she could to keep her mother out of the hospital. Cochran helped implement a palliative care program (specialized medical care for people with a serious illness) for her mother. “There was no medical system set up for [palliative care] where she was, but we did it on [our own] with friends, family, and my mom’s physician,” Cochran explains.

Cochran’s mom ended up dying within five weeks of receiving her diagnosis. When she died, Cochran realized that she and the team she helped form had “midwifed” her mother the way birth midwives help expectant and new mothers.

In the past, Cochran had received exquisite care from birth midwives during the birth of her second child. The midwives, with the help of a good doctor, helped Cochran heal from the trauma she experienced during her first child’s birth.
“When my mom died, all of that flooded back because it was so traumatic,” Cochran says.

“[And] I [saw] first hand how traumatic advanced illness and dying is for people in the medical system. [So, I thought I could] be like these birth midwives, and provide healing from some of that trauma.”

Cara Schuster

End-of-life guide and massage therapist, Fox Den Folk Care

Cara Schuster didn’t know anything about death doulas, death midwifery, or green burial until a few years ago. “I was going through a personal journey and doing some shamanic work [and] my practitioner had told me to do a week-long journey,” Schuster says.

“During that journey, I came across death midwifery.”

Prior to learning about alternative death work, Schuster didn’t have a lot of personal experience with death besides losing grandparents, pets, and friends. “I don’t think I experienced anything more than your average person at the age of 40,” she says. “I did lose my father when I was a baby, so, I did have a very interesting concept of death from a young age.”

What death doulas do

Death doulas provide a wide range of services; all are non-medical. Some doulas only “sit vigil,” meaning they provide emotional support and a caring presence for the dying and the dying’s family. Other doulas enter a client’s home well before hospice is involved and provide practical help in the home. And some doulas are well-versed in helping people plan for their death; they prepare advance directives, wills, and more.

Since I only recently completed my coursework and started volunteering for hospice, I tend to provide practical services. However, as I gain more experience and sit bedside at more vigils, I will expand my services accordingly.

Currently, Schuster, who is a certified death midwife and doula, considers herself an end-of-life guide because she is not helping people transition. “It hasn’t been my experience thus far,” she says. However, Schuster knows her work is ever-evolving.

So far, Schuster has assisted two families with home funerals. Both of those families had different needs she helped met. “I was with one of the families for a week off and on and was present through the transition of the passing—I had known that person for 20 years,” she adds.

Cochran has practiced as a death doula since 2005, but has worked as a registered nurse in end-of-life care within and outside of hospice since 2000. She currently trains end-of-life doulas online and in-person at various workshops and conferences throughout the United States.

Cochran’s service list, along with her teachings through her School of Accompanying the Dying, are ever-evolving, too.

Why this work is inspiring

Many people tend to wonder how death care industry workers “do it,” and I get it.

Death, loss, and grief are incredibly tough things to deal with. However, most any death doula or end-of-life caregiver will tell you that their work has many redeeming qualities.

“The elation I have felt from helping these two families—there’s nothing that can compare to any of the work I’ve done,” Schuster says.

“It was incredibly fulfilling.”

Cochran adds that she continues to do this tough work after 18 years of service because it’s her gift to give to the dying. “I’ve tried to not be a hospice nurse and death doula more than once because maybe I had seen too many people die within a couple of days…” But she says that feeling never lasts.

“What I’ve realized in all this is that I have to care for me, because that thing inside of me that wants to help you doesn’t go away,” Cochran explains.

“I have so much to give. It’s a gift from God—I have nothing to do with it.”

And although I’ve yet to serve an actual client through the dying process, my studies and volunteer work through hospice compel me to agree with Schuster and Cochran’s sentiments.

This work isn’t easy—human emotions and death are often messy. But the support death doulas, midwives, and guides provide families can truly help many people find some peace and closure during an indescribably hard time. And that’s beautiful in its own way.

Complete Article HERE!