Category: Healing and Helping Professionals

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Scared of death?

An end-of-life coach might be the answer

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You may be familiar with birth doulas. These coaches, or “birth companions” assist pregnant women through the delivery of their child and postpartum recovery. They’re not OBGYNs, but they are highly trained in how to offer emotional and physical support and guidance to a mother.

Sound nice? Plenty of moms-to-be think so, and the doula movement has been growing steadily over the past couple of years. Now people on the other side of the life spectrum can contact doulas as well to quell fears about dying and ease their transition.

In order to decide if an end-of-life doula is right for you, it’s first important to understand what exactly they are, and what they’re not.

First off: The preferred term is, in fact, end-of-life doula, rather than “death doula.” Death doula admittedly has an intriguingly spooky, cultish air about it, but it tends to perpetuate negative misinformation about the role, like the idea that these doulas assist in administering lethal injections. And in order to bring awareness to any movement or group, it helps to consistently use the same terms.

To find out more, Considerable spoke with Deanna Cochran, founder of Quality of Life Care and one of the founding directors of the National End-of-Life Doula Alliance. 

“I’ve been doing this since 2005, before there was a death-positive movement at all,” Cochran said. “What was going on was a scattering around the world … I found them when I began blogging in 2006 as a private end-of-life doula.

“I thought I was going to cause a scene doing what I was doing … I wanted everyone to know that you can have this medicine, these treatments, this therapy long before you’re sent to hospice. Nobody wants to admit they’re dying, but then people have miserable experiences dying because they’re not getting palliative care.”

So what exactly is an end-of-life doula, and how are they different from, say, a hospice nurse or in-home caregiver?

Cochran described an end-of-life doula as “a person who accompanies another through dying and death — holistic, nonmedical, practical support.”

Doulas don’t exist separately from hospice care. In many cases, end-of-life doulas work in conjunction with hospices to provide an overarching holistic experience.

“End-of-life doulas accompany hospice,” Cochran explained. “Hospice is fantastic, but the problem is they don’t have the kind of time that might be needed. Nurses can’t stay with a patient for hours and hours — sometimes the hospice would like more support for the patient but the hospice doesn’t always have the volunteers available.”

“[Think of a doula] kind of like a firefighter; the doulas understand that you never know when vigils or a high-need situation is going to happen, and they’re willing to go out there in the crisis situations. Hospice volunteers are not expected to tend to crises; they’ve planned their volunteer schedule. The doula team is that kind of team within hospice.

“We’re like mediators or advocates; we’re not advocating for the family against the system — we’re advocating for the family and the system.”

In many ways, doulas act as a bridge between the other care services end-of-life patients will receive. 

“Information gets lost between nursing home, hospital, and rehab. Medications get lost along the way, people aren’t getting informed, so a doula can make sure everyone’s informed all along the way,” Cochran said. “At death the [hospice care] team is gone; bereavement is a new team. But a doula is entered into the system before death, during, and after, during bereavement. They offer an extra layer of support not just for the family, but for the hospice team. Extra expertise, extra training, and they know their place alongside hospice. It’s not a different agenda.”

Doulas are trained to assist both the dying patient and their loved ones through all stages of death, something that most hospitals and hospices don’t supply. They have to be incredibly empathetic and ready to jump in with an appropriate care response in all manner of situations.

“[Doulas] have to be OK being a witness and not a savior; a companion, not a leader. They have to come in with curiosity, not a plan. They have to be very self-aware,” Cochran told Considerable.

Death and the dying process is a sensitive, tricky subject, and some misconceptions about end-of-life doulas have arisen as a result. Doulas are often referred to as spiritual, and their approach to help and healing has spiritual elements. “Spiritual is a term that especially means vastly different things to different people, and some patients may feel concerned by that definition.

“Doulas are not trying to replace the [hospice] chaplins by providing spiritual care. Just by being present, that’s spiritually supportive,” Cochran explained.

And, especially importantly: “We are not euthanizers! There was an ugly article insinuating that death doulas ‘do the final thing’ … Absolutely not. That has nothing to do with us. We would never be responsible for the final medication in any assisted death. That’s not our role.”

Cochran also mentioned that doulas are especially important these days because the way we die has changed. 

“We’re living with chronic illnesses for a long time. Modern marvels are promising to keep us alive; we’ve never died like this before, of course people are scared.”

By becoming aware of the dying process sooner, and as medical science keeps terminally ill patients alive for longer than these diseases used to allow, patients have more time to contemplate death and face the reality of what the end of their life will entail.

“In advanced illness, everyone in the care system is focusing on life, even in the face of dying,” Cochran said. “Let’s start having gentle, realistic conversations that this train isn’t going backwards. Let’s focus on excellent symptom management and care for the whole family to support you as best as possible and not traumatize you through a system that’s trying to turn you around when you’re not going to.”

To find out more about end-of-life doulas, and where to find one in your area, check out NEDA’s website.

Complete Article ↪HERE↩!

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Former Ottawa paramedic on his experience with death…

‘I’ve got a busload of people up here in my head’

J.P. Trottier in 2006, when he served with Ottawa Paramedic Service.

By Bruce Deachman

J.P. Trottier was with the Ottawa Paramedic Service for 36 years – 21 as a frontline paramedic and 15 as public information officer. He retired in January 2017.

“I don’t know how many deaths I’ve seen, but it’s in the hundreds. I remember one shift doing three vital-signs-absent calls in a row. That was a busy eight hours.

“You just never know where you’re going to be in five minutes. Are you going to be in the middle of a crime scene? Are you going to be in somebody’s living room, somebody with abdominal pain? Somebody having a heart attack?

“Sometimes, it’s just the daily grind. It can be very humdrum, and then all of a sudden your next shift will be just crazy. You’ll do a shooting, you’ll do an elderly gentleman who’s collapsed at home and his vital signs are absent, you’ll do a childbirth call … you’ll do a whole bunch of different things.”

“You have some really horrible moments in the job, and you have some absolutely spectacular moments. Paramedics have what they call the holy-shit call. They take a look at the person and they know they’re in trouble — that that person is in deep trouble and probably minutes from dying. We call that the holy-shit call. It’s like, get to work. And you can tell after a little bit of experience — you walk into a room and look at somebody. And then it becomes a bit mechanical; your training kicks in and you don’t really think about it. But when you see them like that and 10 minutes later you’ve given your medication and taken your vital signs, or your partner’s taking the vital signs and you’ve slapped the oxygen on them or maybe put in an IV and put the medication in when all the vital signs are OK and off you go. And 10 minutes later when they’re looking much better, it’s an amazing thing to see. It’s absolutely beautiful. It’s absolutely the best part of the job.”

•

“You don’t forget many of them. The difficult ones you don’t forget. I tell people that I’ve got a busload of people up here in my head, waiting to step out. It’s not being haunted; it’s just that you will never be able to forget that eight-year-old boy who played chicken with a train and lost. You’ll never be able to forget that. If anybody were to come to me and say, ‘Oh, I can handle it … ” Yeah, OK, maybe you can handle it differently than I can, but there’s no way you’re going to be able to forget that. The young boy who comes home from school for lunch and finds his mother dead upstairs because she put a shotgun in her mouth. You’ll never be able to forget that. Never. But they don’t haunt me.

“Very early in my career I had one of those horrible calls – it was a young girl, six or seven years old, crossing the street and was struck by a car. She died en route, and every time I drive by there, it’s like, ‘This is where it happened.’ And it’s no more than that. But they’re with you.”

•

“There’s that horrible side where you can’t help … they’re in a car crash, pinned, and the paramedics are trying to put the IV in and they’re doing a whole bunch of different things, and you’re waiting and waiting, and the blood pressure is coming down and down and down, and you can’t stem the bleeding because you can’t access where the injury is.

“So yeah, sometimes you can’t resuscitate them, and that’s the moment that you turn your attention to the family. They’re not the patients, you’re not there specifically for them or because of them, but all paramedics will do this; they will turn their attention to the family.

“I used to do presentations for career days at high schools, and they would ask what’s the most important thing about your character that would make you a good paramedic, and I would say two things. The first was that you really have to be a caring person, because that’s what you do. That’s your job, you’re caring for people — their emotional needs, their physical needs. And the second part is good communications skills. You must have good communications skills because of instances like this, where a family member has passed away and you need to inform them. And don’t use any jargon, don’t use any of that nonsense. ‘I’m sorry he passed away. We couldn’t do anything.’ And you don’t give them a lot of info, because they’ll forget most of it after you tell them.

“We have to be careful what we tell them, because they will remember that moment, forever. It really demands respect, and I don’t care if they’re gang members or whatever the case may be. We don’t care; it’s a patient and they have friends or family, and there’s a mother or father somewhere, maybe, or children, grandchildren or great-grandchildren, and all of them will be affected by this.”

•

“I would often turn my attention to people’s rooms to give me an idea of the life they led. The older generation especially will have a lot of photographs on their dressers or in the bedroom. Even if I don’t know these people, it kind of puts you there. Look at the clothes they’re wearing. Look at the cars they were driving. It gives you a bit of a glance at their lives. There are pictures of their children and grandchildren. It kind of gives you a quick bio of them.

“The ones that really stand out for me are ones where someone’s standing next to a Spitfire, because you know they served. Did he fly planes? Was he in the war? Was he a mechanic? You can sometimes ask the family a little bit about them — you have to tread carefully there, because they may not take it very well. But in some instances I was able to ask the family. ‘Oh, he served?’ — because there’s a picture of him. ‘Yes, and he went to this battle and that battle,’ and of course they’re proud of that. And sometimes I take a minute to thank them for their service to their country. Sometimes you’ll see their medals on the wall, and you can talk about that a little bit.

“It can be fascinating. You don’t know about this person or the life they led, if they discovered a cure for something. You just never know.”

•

“Has my view of death changed over the years? Yes. I think just because of the sheer number of calls that we do with death and near-death … a patient you were able to get back from the grip of death that they were in. The shootings, the stabbings, the crib deaths — Sudden Infant Death Syndrome — for sure, gave me a better understanding of death. You’re more aware of death and what it means and why it happens, a little bit — we can never know why, really. But it gives you a better appreciation of it, and thus a better understanding of it.”

“You see a lot of circumstances. The suicides are sad. And you also see the murder-suicides, and those are weird. There was one I did where this man had custody of his child during the weekend, and he decided on Sunday night that the child was not going back home to his mother, and threw him off the balcony and then jumped himself.

“So you get to the scene and you’ve got this to deal with. And you only know the circumstances after the fact, but you have a damn good clue that at three o’clock in the morning, when the OC Transpo driver found him when going out to his shift, that the kid, maybe two or three years old, didn’t wake up fully dressed at three o’clock in the morning to jump off of the balcony. So now you’ve got that anger issue. You want to kill yourself? That’s somewhat understandable. But to take an innocent child away from his mother and his life? It’s just … it’s weird. There’s this brain storm happening there in your head, in my head, that’s very difficult to deal with and make sense of. So those are very difficult to do.

Complete Article ↪HERE↩!

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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↩!

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A Good Life And A Good Death…

What Is Palliative Care?


Palliative care is a growing specialty that provides comfort care and that teaches patients and doctors how to talk about patients’ goals for life with serious disease and how to prepare for a good ending.

By

“He will not die on your watch.”

That’s what the family of a patient told Sunita Puri when she was a resident in internal medicine. They were chilling words for the young doctor as she took over the care of a very sick man on the overnight shift.

To Puri, the patient, who had widespread metastatic liver cancer, appeared to be dying. She tried to talk with the family about forgoing heroic measures, to let him have peace in his last hours. But they were adamant.

“Do everything,” they told her. Hours after admitting him to the intensive care unit, she was overseeing chest compressions to revive him after his heart stopped. “I was blinking back tears,” she recalls. The man died that night.

Few people would say they want to die while undergoing painful last-minute resuscitation or while hooked up to machines in a hospital. Yet it’s the death many Americans end up with. Now a palliative care doctor at the University of Southern California, Puri is fighting for an alternative.

In her new book, That Good Night: Life and Medicine in the Eleventh Hour, Puri writes about how palliative care specialists are working to change medicine from within — teaching other doctors how to talk to patients about their hopes and fears, not just their disease and treatment. Palliative care, she says, gives doctors, patients and their families a new vocabulary with which to talk about the way life’s goals can shift when you have a serious illness and how to plan for a good final chapter.

We spoke with Puri about the field of palliative care and what patients need to know.

This interview has been edited for clarity and length.

What is palliative care, and how is it different from hospice?

Palliative care is attending to the physical, emotional and spiritual suffering of patients and families who are dealing with a serious illness. Hospice is a type of palliative care that we provide in the last six months of life. And I would say hospice is even distinct from end-of-life care, which is really the care of patients in the last days and hours of their lives.

In our country, hospice is overwhelmingly provided in a patient’s home or in a nursing home, whereas palliative care is available at any stage of an illness. And so we can see people in the hospital; we can see people in clinics when they come to see their oncologist or their cardiologist. With palliative care, you can have us on your team just right alongside care like chemotherapy or dialysis — we’re meant to attend to your quality of life. And in an ideal circumstance, we will be there when you decide to transition to hospice.

How common is it now to have palliative care specialists available?

There’s actually very few of us, and many of us are concentrated in the big cities. So in rural areas or in nonacademic teaching hospitals, there’s definitely a shortage of palliative care docs around the country. Our presence and the need for us is growing though. So for example, the American Society of Clinical Oncology now has a recommendation that at the time of diagnosis of a serious illness, palliative care should be involved. Patients with a serious illness can ask for a consultation with the palliative care team if their other care providers don’t bring it up, either in a hospital or a clinic setting.

We have studies that show that for patients with, for example, metastatic lung cancer, if they got palliative care right alongside their cancer treatment — as opposed to just getting cancer treatment alone — the patients actually lived longer and had better quality-of-life scores.

What other advantages does palliative care offer?

I think the emotional and spiritual aspects of it are actually some of the most important supports that we can offer our patients.

One thing my patients tell me a lot is, “Thank you for listening.” And I think there is something about our field — focused on being silent and listening to people — that is deeply therapeutic for the vast majority of my patients. To say, “I’m going to be with you through this whole journey, no matter what the outcome with your treatment, and work with your other doctors to make sure we’re all on the same page about what therapies may or may not actually be helpful to you in the way that you define helpful.” I think there’s something pretty magical about that.

You wrote that when you found palliative care, you were finally able to become the kind of doctor you wanted to be. What did you mean by that?

I grew up the daughter of an anesthesiologist — she was always my first model for what a doctor should be. My mother is very technically skilled, but she is also deeply devoted to the idea that every human being is kind of an embodiment of the divine who she felt she was in service to. So, she really had this beautiful intertwining in her practice of being very scientific but also being very spiritual — being able to take people to the operating room and control their physiology to get them through an operation but also understanding that the body and nature has its limits.

And that’s what I wanted to be: somebody with the technical and scientific command of medicine but who understood that every human life is different from the other. In my medical training, there were so much focus on the technical and scientific aspects. But as I was learning those things, I was not also learning how to talk with someone who has a serious diagnosis. How do you explain to them how their life might change? How do you ask, if this is not something that we can cure, “What would be really important to you in the time that you have?” And this language was not given to me in medical training.

When people get a diagnosis like cancer, they sometimes talk about “being a fighter” or “fighting the disease.” Why do you find that kind of language problematic?

When we think of disease as a battle to fight, you kind of divide people into winners and losers — which is not a mentality I think benefits them.

What’s dangerous is that when we’re talking about a fight, if someone chooses not to “continue to fight,” then people will often tell me, “I feel like I’m giving up.” I have to reframe that for them to say, “You may be a fighter, but your body cannot fight this anymore. Can you hear that distinction between you and the natural limits of your body?” I have found that to be incredibly potent because people can see that this isn’t a personal thing.

You know, you did not deserve to get this horrible bout of heart failure, and your not “beating it” is not your fault.

What are the consequences for doctors and for the patient’s treatment of using this kind of language?

I think people feel an obligation, if they identify as a fighter, to keep trying any and every treatment offered to them — sometimes without a full appreciation of the risks of those treatments or whether those treatments might keep them in a place they don’t want to be, like an intensive care unit, instead of having the opportunity to go home. I think that sort of “fight or give up” mentality is such a toxic binary. And I’ve seen people suffer tremendously because they felt that if they said no to therapy, that they would be letting other people around them down.

From my perspective, when I was in my residency, when I heard those words, I then felt obligated to offer anything and everything to the patient or family — even when I knew that certain treatments were not going to help them but could very well hurt them. So I think hearing those words almost put a stop to any real in-depth conversation about what someone is hoping for and what realistically we as physicians can offer them to fulfill those hopes.

I still regret the ways that I offered therapies to patients that I knew would not be in their best interest. But I didn’t know how to talk about another way when I was in my training.

What kind of therapies might be harmful or not be in their best interest?

Being in a clinical trial is one example of a therapy people often feel they need to take but may not truly be in their best interests if it, for example, requires them to uproot their life and go elsewhere. Or if it has side effects that we may not really know about, because part of the trial is to figure out what the toxicities are.

And the other scenario I’ve seen is people in the ICU with an overwhelming infection or a set of post-surgical complications, and they’re suffering one complication after another, especially if they’re elderly. And we can keep trying to manipulate their physiology, using very powerful medications and machines, but we’re not always as attentive to what someone’s life would actually look like if we were successful in reversing some of the problems that they’re going through.

So when a palliative care team is involved and you have these kinds of difficult discussions early on in a serious diagnosis, what can a good outcome look like for the patient?

The advantage of getting to know people and their family early on when they first get a diagnosis is that we can really help them through their treatment. To think about and articulate what’s most important for them if a specific treatment doesn’t work or if it takes a huge toll on their quality of life. And when we can have those discussions, then a happy ending might be that they have their pain, their shortness of breath, their nausea, all of those things exquisitely well controlled. And they decide on their own terms when to transition, for example, to hospice.

When I was a hospice doctor, I think the best situations were when people were still able to be themselves and participate as much in living as they could — even though their bodies were failing. They could still be cognitively intact. Their symptoms were well controlled. They were in a place they wanted to be in. They were living their lives on their own terms for however long they had. And that to me is what a good ending can look like.

Even other doctors don’t always understand what palliative care is or embrace it. What do you think the obstacle is?

I think doing what we do in our field is a little bit of the rejection of our culture’s idea of what medicine exists to do. I think the public thinks of doctors as heroes that can beat diseases and extend lives. And in many important ways we are heroes. Surgery is safer. Childbirth is safer. We’ve eliminated certain infectious diseases almost entirely because of vaccines. But I think we are not good at knowing what to do when we can’t fix a problem.

For patients who have a terminal diagnosis, what advice would you give about how to decide whether or not to opt for some of the more extreme life-sustaining measures, like going on a ventilator or a feeding tube?

In planning ahead, I always encourage people to think about the quality of life that they value. What are the things that they would be OK not doing? And what are the things that if they couldn’t do them would make their life extremely difficult — maybe even not worth living? And if people can think about their values and their goals in broad strokes, the broad strokes can help inform the more specific question about CPR or a ventilator.

I encourage families to really look to their doctors to guide them. And to say, if there’s a question about going on a ventilator, “Is this for a reversible condition, as far as you can tell, doctor? Or am I taking a gamble, a big enough gamble that he may be stuck on the ventilator forever, and then I would have to make the decision to stop? Tell me more about that.” I think being able to ask your doctor openly and not feel alone in making some of these weighty decisions is extremely important. So there are those two components of it: thinking yourself, “What is the sort of life I value? What would be a life that would be too hard for me to live even with the help of medicine?” And to talk to your doctor, even if you’re healthy right now, because you want to prepare for the storm.

Complete Article ↪HERE↩!

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Health care fellows learn the tough task of discussing death and dying

Foundation’s fellowship program aims to expand number of health professionals skilled at discussing end-of-life issues with patients

By Gary Rotstein

Each Monday night for eight weeks, the group of aspiring physicians, pharmacists, social workers, medical ethicists and other future health care professionals met for three hours to talk about death — for the purpose of being better able to talk about death.

The 33 post-graduate students and other trainees spent time at a residential hospice, hospital and nursing home. They heard from palliative care doctors, geriatricians and other specialists. They talked with relatives of those who had died. They practiced end-of-life conversations with one another.

And by their last meeting this month, the participants in the Death & Dying Fellowship of the Jewish Healthcare Foundation learned how to broach a difficult topic with terminally ill patients and those individuals’ loved ones — a topic for which their formal studies typically provided minimal preparation.

“When you’re in front of a family crying their eyes out, it’s a whole different game,” said participant Tamara Means, a former medical resident who admitted that her past nervousness addressing such issues probably only made things worse for some seriously ill patients.

She and others learned during two months how, among other things, to listen better to patients and families; to look for cues that they’re ready to face up to mortality; to bring up death-related discussion in a non-judgmental way that respects different cultural values; to be able to consider emotions in addition to medical skills and technology.

The fellowship is one of a variety of Jewish Healthcare Foundation programs intended to promote a better end-of-life experience, including more personal planning and decision-making by those affected. The foundation’s officials believe the medical profession needs to do more to help patients address the potential failure of curative treatment, with too little taught about end-of-life conversations in medical school.

If existing practitioners won’t take the lead in helping seriously ill people prepare for their final stage of life, the foundation is counting on the field’s newcomers to do so. Since launching the annual Death & Dying Fellowship for that purpose five years ago, the program has drawn far more interest than officials anticipated, with all of its available slots filled again this year.

“You’re our apostles — 30 to 35 people who will go out and help hundreds of others learn how to talk about death and end-of-life,” foundation president Karen Wolk Feinstein told them April 1.

“There’s a lot more that can and should be done” in the way of core training in school, Michael Barkowski, a second-year medical resident at Allegheny General Hospital, agreed afterward while citing the confidence he gained from the fellowship program. “No matter what field we go into, we’re all going to work with patients who have chronic diseases and end-of-life illnesses.”

Some 2.7 million Americans die each year, and most die under medical supervision in a hospital or nursing home rather than in their own residence. Those who die at home have frequently been hospitalized late in life themselves.

So most individuals have interacted with medical professionals before death, but the fellowship program’s instructors say both sides often ignore end-of-life discussion, such as how much intensive treatment a patient would want if there’s minimal chance of benefit.

It’s easier to just avoid a topic that makes everyone uneasy, Robert Arnold, medical director of the UPMC Palliative and Supportive Institute, told the fellows at their final session. He noted that patients are fearful about the end of their lives and doctors lack incentives to discuss it.

“We collude not to talk about it,” he said, although palliative care specialists such as he have more time and training for that purpose.

“There’s nothing natural about this,” Dr. Arnold said while coaching his young listeners to make end-of-life care part of their professional “identity.”

They should be good listeners as to the expectations of patients and families, he said, and then offer themselves as guides to the decision-making that eventually will be required. Their knowledge, if shared properly, can assist patients in weighing the merits of more procedures versus more comfort.

Alexandria Abdalla, who is pursuing a master’s degree in bioethics from the University of Pittsburgh, said she always has had a fascination with death but knew little before the program about how to discuss it professionally. She said she has learned how to “read between the lines” of what patients are saying and acknowledge their emotions.

She put that to use recently when shadowing a geriatric oncology doctor at one of UPMC’s hospitals. Ms. Abdalla was left alone with an elderly woman temporarily after the doctor left her room. The patient mentioned her fears about her prognosis, and instead of trying to talk her out of it, Ms. Abdalla simply listened.

“Then I told her, ‘I’m sorry what you’re going through is so difficult — I wish we weren’t in this position,’” Ms. Abdalla said. “She seemed to appreciate just having someone to listen.”

Dr. Barkowski, the 29-year-old AGH resident who plans to specialize in palliative care, said he now better understands how to build relationships with patients prior to such a serious conversation. In a recent visit with a family in the hospital’s intensive care unit, he sought no quick responses when laying out the options for an elderly woman with advanced breast cancer.

“I went into it without any agenda like previously, when I might have wanted a decision within one meeting,” he said. “We talked every day for the next few days. … We were journeying together, like Dr. Arnold was saying — you’re an educated guide helping them understand the medical things happening, how severe things are, what the limits are of what we can do, learning about the patient’s values and aligning treatment with those.”

Ultimately, a decision was made to discontinue treatment — the patient had reached the point of requiring kidney dialysis on top of other issues — but it was in a manner that her family understood, accepting it as the right decision for the patient, who died within days.

“It’s all about building trust,” Dr. Barkowski said. “The listening is where everything starts, and the fellowship was able to build on that.”

The Jewish Healthcare Foundation expects to sponsor the fellowship again in early 2020 for individuals pursuing health care-related careers who are in graduate school or medical training. Application information will be made available later this year on the foundation’s website.

Complete Article ↪HERE↩!

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A Good Life And A Good Death

What Is Palliative Care?

Palliative care is a growing specialty that provides comfort care and that teaches patients and doctors how to talk about patients’ goals for life with serious disease and how to prepare for a good ending.

By

“He will not die on your watch.”

That’s what the family of a patient told Sunita Puri when she was a resident in internal medicine. They were chilling words for the young doctor as she took over the care of a very sick man on the overnight shift.

To Puri, the patient, who had widespread metastatic liver cancer, appeared to be dying. She tried to talk with the family about forgoing heroic measures, to let him have peace in his last hours. But they were adamant.

“Do everything,” they told her. Hours after admitting him to the intensive care unit, she was overseeing chest compressions to revive him after his heart stopped. “I was blinking back tears,” she recalls. The man died that night.

Few people would say they want to die while undergoing painful last-minute resuscitation or while hooked up to machines in a hospital. Yet it’s the death many Americans end up with. Now a palliative care doctor at the University of Southern California, Puri is fighting for an alternative.

In her new book, That Good Night: Life and Medicine in the Eleventh Hour, Puri writes about how palliative care specialists are working to change medicine from within — teaching other doctors how to talk to patients about their hopes and fears, not just their disease and treatment. Palliative care, she says, gives doctors, patients and their families a new vocabulary with which to talk about the way life’s goals can shift when you have a serious illness and how to plan for a good final chapter.

We spoke with Puri about the field of palliative care and what patients need to know.

This interview has been edited for clarity and length.

What is palliative care, and how is it different from hospice?

Palliative care is attending to the physical, emotional and spiritual suffering of patients and families who are dealing with a serious illness. Hospice is a type of palliative care that we provide in the last six months of life. And I would say hospice is even distinct from end-of-life care, which is really the care of patients in the last days and hours of their lives.

In our country, hospice is overwhelmingly provided in a patient’s home or in a nursing home, whereas palliative care is available at any stage of an illness. And so we can see people in the hospital; we can see people in clinics when they come to see their oncologist or their cardiologist. With palliative care, you can have us on your team just right alongside care like chemotherapy or dialysis — we’re meant to attend to your quality of life. And in an ideal circumstance, we will be there when you decide to transition to hospice.

How common is it now to have palliative care specialists available?

There’s actually very few of us, and many of us are concentrated in the big cities. So in rural areas or in nonacademic teaching hospitals, there’s definitely a shortage of palliative care docs around the country. Our presence and the need for us is growing though. So for example, the American Society of Clinical Oncology now has a recommendation that at the time of diagnosis of a serious illness, palliative care should be involved. Patients with a serious illness can ask for a consultation with the palliative care team if their other care providers don’t bring it up, either in a hospital or a clinic setting.

We have studies that show that for patients with, for example, metastatic lung cancer, if they got palliative care right alongside their cancer treatment — as opposed to just getting cancer treatment alone — the patients actually lived longer and had better quality-of-life scores.

What other advantages does palliative care offer?

I think the emotional and spiritual aspects of it are actually some of the most important supports that we can offer our patients.

One thing my patients tell me a lot is, “Thank you for listening.” And I think there is something about our field — focused on being silent and listening to people — that is deeply therapeutic for the vast majority of my patients. To say, “I’m going to be with you through this whole journey, no matter what the outcome with your treatment, and work with your other doctors to make sure we’re all on the same page about what therapies may or may not actually be helpful to you in the way that you define helpful.” I think there’s something pretty magical about that.

You wrote that when you found palliative care, you were finally able to become the kind of doctor you wanted to be. What did you mean by that?

I grew up the daughter of an anesthesiologist — she was always my first model for what a doctor should be. My mother is very technically skilled, but she is also deeply devoted to the idea that every human being is kind of an embodiment of the divine who she felt she was in service to. So, she really had this beautiful intertwining in her practice of being very scientific but also being very spiritual — being able to take people to the operating room and control their physiology to get them through an operation but also understanding that the body and nature has its limits.

And that’s what I wanted to be: somebody with the technical and scientific command of medicine but who understood that every human life is different from the other. In my medical training, there were so much focus on the technical and scientific aspects. But as I was learning those things, I was not also learning how to talk with someone who has a serious diagnosis. How do you explain to them how their life might change? How do you ask, if this is not something that we can cure, “What would be really important to you in the time that you have?” And this language was not given to me in medical training.

When people get a diagnosis like cancer, they sometimes talk about “being a fighter” or “fighting the disease.” Why do you find that kind of language problematic?

When we think of disease as a battle to fight, you kind of divide people into winners and losers — which is not a mentality I think benefits them.

What’s dangerous is that when we’re talking about a fight, if someone chooses not to “continue to fight,” then people will often tell me, “I feel like I’m giving up.” I have to reframe that for them to say, “You may be a fighter, but your body cannot fight this anymore. Can you hear that distinction between you and the natural limits of your body?” I have found that to be incredibly potent because people can see that this isn’t a personal thing.

You know, you did not deserve to get this horrible bout of heart failure, and your not “beating it” is not your fault.

What are the consequences for doctors and for the patient’s treatment of using this kind of language?

I think people feel an obligation, if they identify as a fighter, to keep trying any and every treatment offered to them — sometimes without a full appreciation of the risks of those treatments or whether those treatments might keep them in a place they don’t want to be, like an intensive care unit, instead of having the opportunity to go home. I think that sort of “fight or give up” mentality is such a toxic binary. And I’ve seen people suffer tremendously because they felt that if they said no to therapy, that they would be letting other people around them down.

From my perspective, when I was in my residency, when I heard those words, I then felt obligated to offer anything and everything to the patient or family — even when I knew that certain treatments were not going to help them but could very well hurt them. So I think hearing those words almost put a stop to any real in-depth conversation about what someone is hoping for and what realistically we as physicians can offer them to fulfill those hopes.

I still regret the ways that I offered therapies to patients that I knew would not be in their best interest. But I didn’t know how to talk about another way when I was in my training.

What kind of therapies might be harmful or not be in their best interest?

Being in a clinical trial is one example of a therapy people often feel they need to take but may not truly be in their best interests if it, for example, requires them to uproot their life and go elsewhere. Or if it has side effects that we may not really know about, because part of the trial is to figure out what the toxicities are.

And the other scenario I’ve seen is people in the ICU with an overwhelming infection or a set of post-surgical complications, and they’re suffering one complication after another, especially if they’re elderly. And we can keep trying to manipulate their physiology, using very powerful medications and machines, but we’re not always as attentive to what someone’s life would actually look like if we were successful in reversing some of the problems that they’re going through.

So when a palliative care team is involved and you have these kinds of difficult discussions early on in a serious diagnosis, what can a good outcome look like for the patient?

The advantage of getting to know people and their family early on when they first get a diagnosis is that we can really help them through their treatment. To think about and articulate what’s most important for them if a specific treatment doesn’t work or if it takes a huge toll on their quality of life. And when we can have those discussions, then a happy ending might be that they have their pain, their shortness of breath, their nausea, all of those things exquisitely well controlled. And they decide on their own terms when to transition, for example, to hospice.

When I was a hospice doctor, I think the best situations were when people were still able to be themselves and participate as much in living as they could — even though their bodies were failing. They could still be cognitively intact. Their symptoms were well controlled. They were in a place they wanted to be in. They were living their lives on their own terms for however long they had. And that to me is what a good ending can look like.

Even other doctors don’t always understand what palliative care is or embrace it. What do you think the obstacle is?

I think doing what we do in our field is a little bit of the rejection of our culture’s idea of what medicine exists to do. I think the public thinks of doctors as heroes that can beat diseases and extend lives. And in many important ways we are heroes. Surgery is safer. Childbirth is safer. We’ve eliminated certain infectious diseases almost entirely because of vaccines. But I think we are not good at knowing what to do when we can’t fix a problem.

For patients who have a terminal diagnosis, what advice would you give about how to decide whether or not to opt for some of the more extreme life-sustaining measures, like going on a ventilator or a feeding tube?

In planning ahead, I always encourage people to think about the quality of life that they value. What are the things that they would be OK not doing? And what are the things that if they couldn’t do them would make their life extremely difficult — maybe even not worth living? And if people can think about their values and their goals in broad strokes, the broad strokes can help inform the more specific question about CPR or a ventilator.

I encourage families to really look to their doctors to guide them. And to say, if there’s a question about going on a ventilator, “Is this for a reversible condition, as far as you can tell, doctor? Or am I taking a gamble, a big enough gamble that he may be stuck on the ventilator forever, and then I would have to make the decision to stop? Tell me more about that.” I think being able to ask your doctor openly and not feel alone in making some of these weighty decisions is extremely important. So there are those two components of it: thinking yourself, “What is the sort of life I value? What would be a life that would be too hard for me to live even with the help of medicine?” And to talk to your doctor, even if you’re healthy right now, because you want to prepare for the storm.

Complete Article ↪HERE↩!