Category: Healing and Helping Professionals

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How to Make Doctors Think About Death

End-of-life treatment guidelines would help families, physicians and nurses confront the inevitable with care and compassion.

By Theresa Brown

My patient, an octogenarian with pneumonia and acute leukemia, was too frail to tolerate the standard treatment for his cancer, and trying to cure his pneumonia with intravenous antibiotics, when the leukemia had already compromised his immune system, would only have weakened him further. It made sense to switch him to “comfort measures”: to focus on alleviating his suffering rather than curing him.

It would also make sense to have general treatment guidelines for situations like this, guidelines to indicate when comfort, not cure, is most appropriate. But no such guidelines exist.

Which is why the patient’s family physician could come to the hospital, imagining himself as the cavalry, and switch the patient back to active treatment, including full resuscitation if he had a cardiac arrest. The patient was so sick that active treatment necessitated intensive care.

I took him to the intensive care unit myself. When I got there, I got into an argument with the receiving nurse about the patient’s status.

Looking to defuse the situation, the nurse apologized. “I hate these cases where there’s no point to what we’re doing,” he said.

No point. The patient’s stay in intensive care was the clinical equivalent of bailing out a sinking boat. He might gain a little time, but not much.

Modern health care accomplishes great feats of healing every day. But life ends; there are patients for whom real healing has become impossible. Their bodies have simply taken too many hits. Aggressive care can push back their death for a few days, but it is unlikely to keep them from dying soon.

These situations tend to be obvious to clinical staff, and especially nurses. We administer the hands-on care. But for those around us — physicians, families and the hospital generally — they are not at all clear, and too easily clouded by emotion. That’s why we need end-of-life treatment guidelines.

Such guidelines exist for a host of conditions: cardiac arrest, diabetes, depression. Though they can be controversial — viewed as too restrictive in some cases, in other instances too loose — they set a bar for an appropriate course of care.

‘He Nodded, Apparently Took the Sign Literally and Rushed Up the Steps’

A simple treatment guideline for clinical situations like my octogenarian patient’s might look like this: For patients who have one terminal illness that is either resistant to treatment or can’t be safely treated, combined with a second very serious illness or complication, along with a high degree of physiological frailty, physicians should consider comfort measures instead of cure.

To me, a hospice nurse, this guideline reads like common sense. But doctors who look at patients primarily as collections of individual problems, rather than very sick individuals, can miss the obvious.

Another patient I cared for in the hospital had received a liver transplant, was H.I.V. positive, and had been newly diagnosed with lymphoma. One of his sisters recited his physician’s hope-filled words back to me: “His body isn’t rejecting the liver, his H.I.V. is under control and his lymphoma can be treated.” His mental state had deteriorated to the point that he routinely tried to eat his own feces, but that symptom wasn’t considered relevant.

Health care has many financial incentives that encourage continued treatment, no matter how pointless. Liability issues arise too: Some physicians worry about being sued if they stop aggressive care for dying patients.

But my experience in hospice suggests that the fundamental issue is more basic: lack of time. According to the family of one patient I cared for — 94 years old, septic, minimally conscious, with an intestinal obstruction and a new diagnosis of cancer — no one told them how very ill she was. I would guess the staff didn’t have time, or wasn’t able to make time.

These kinds of discussions take a while because the family’s understanding of the patient’s illness must be sussed out, and their fears, worries and angers must be aired and addressed. “Comfort care” has to be explained in the context of a failing human body. That difficult, time-consuming emotional work can be avoided by simply sending patients to I.C.U. or to another hospital.

Some physicians also believe that they should have the final say about their patients’ care, especially when a patient’s health is failing. Each case is unique, and a physician’s input is invaluable. But doctors are also generally acknowledged to be unrealistically positive prognosticators. The hard truth is that every single one of us will one day reach a point where our irreparable vulnerability, and decline, cannot be denied or reversed.

As technology advances, will it continue to blur the lines between public and private? Explore what’s at stake and what you can do about it.

It helps to look at this question through the lens of medical ethics. In general, the many treatment possibilities available via modern health care are viewed as actively good, or as medical ethicists would say, beneficent. Honoring patients’ autonomy at the end of their lives is also seen as beneficent. In clinical practice, when these competing goods conflict, the treatment decisions that get made tend to be, as I have described, random and disordered.

The guidelines I propose for comfort care introduce a third term into the discussion: maleficence. Pursuing curative care that is pointless creates harm for patients and staff, who, like the frustrated I.C.U. nurse taking over my octogenarian patient, experience moral distress in these situations and a feeling of professional uselessness.

Such guidelines would introduce clarity into end-of-life decisions while still respecting patients’ autonomy. An end-of-life guideline might automatically call a palliative care clinician to the bedside to help patients and family members understand the choices available to them. The guidelines would empower nurses to advocate for comfort care, irrespective of physicians who view aggressive treatment as always being in the patient’s best interest.

For patients who choose full resuscitation and treatment despite being very ill and fragile, a guideline would ensure that they learned about comfort care. But they would never overrule a patient’s wishes for curative treatment.

The day after my octogenarian patient’s transfer to the I.C.U. he returned to our floor, back on comfort measures. I was told that the patient’s oncologist took his family physician aside and, in a scene worthy of a medical TV show, yelled at him.

The family doctor had skipped over the leukemia diagnosis, had reacted to his patient being essentially put on hospice for pneumonia, and either out of sympathy or hubris, had rushed over to the hospital to save him. But he couldn’t be saved, and we all knew that. He died a few days later.

Our society makes admissions of medical futility in the face of human frailty harder by equating “cure” with “fighting back” and “comfort” with “giving up.” A set of guidelines won’t change that. But it would help nurses and doctors acknowledge when cure is impossible, and comfort is the most compassionate, ethical route.

Complete Article ↪HERE↩!

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A Good Death Is Not a Failure, But a Gift

By Linda R. Duska, MD, MPH

I am a gynecologic oncologist and I’m boarded in palliative care. As a result of my training and 20+ years of clinical experience, I feel strongly about caring for the whole patient throughout the clinical course: spiritually, emotionally, and physically. In those 20+ years, I have experienced the end of life with many patients and families. Although everyone handles it differently, I’ve observed some common themes. It is difficult to stop treatment, to accept the inevitable with dignity, to die “well”—not just for the patient and her family, but for her providers as well.

This past Christmas, I experienced the death of a loved one both as a family member and a health care provider, acting in the stead of the health care providers who were absent at the end of life. The experience of my father in law’s passing brought home to me that inappropriate aggressive measures at the end of life are not limited to patients with cancer, but affect us all.

I met my husband when we were freshmen in college, and we spent a lot of time at his father’s home together. My husband has a big Catholic family who are all rabid Eagles fans; I am a Jewish liberal girl raised on the Boston teams. They accepted me unconditionally. I shared Sunday dinner with his family, brought my laundry over, watched movies on his dad’s TV. When my husband and I were married in a Jewish ceremony in Boston, everyone in his family came to the wedding and thoroughly enjoyed the ceremony and dancing the hora at the reception.

My husband’s family, and particularly his father, were an important part of both of our lives. My father-in-law, Ron, was a philosophy professor and a brilliant man who loved to argue (he would say debate) with his children. While he and I disagreed about many things, I never felt judged by him, or by anyone else in the family.

In the last few years, I could tell that Ron was sick, but he was private about the details and I didn’t pry. I did know that he had multiple stents placed in his cardiac vessels. This past year, though, there had been a significant deterioration in his condition. He had to stop golfing due to fatigue, and he was in and out of the hospital with shortness of breath and chest pain.

In December, I visited the community hospital where Ron was receiving care; his third prolonged admission in as many weeks. I found him sitting in a chair wrapped in a heavy blanket in an overheated room. He had lost a lot of weight and looked frail. He had to lean forward to breathe. A few weeks before my visit, he had undergone another cardiac catheterization (there was nothing more to stent) and a renal artery catheterization that showed bilateral significant occlusion.

Ron told me he expected to get better and get back to the golf course. I told him I wished for him to get well enough to go home and stay out of the hospital.

I had spoken to his wife on the telephone before the renal artery catheterization. I talked with her about requesting a palliative care consult as Ron was clearly suffering. We discussed the hard questions I was hoping would be addressed. I don’t know if she asked these questions. I do know that the doctors convinced her that the renal artery catheterization might help him. I know that they didn’t offer a palliative care consultation and I know that they didn’t tell my in-laws that Ron would not get better—that his current state was the best they could hope for.

On Christmas morning, my husband and I received a panicked call from Ron’s wife. When we arrived, he was clearly in distress. An episode of melena (that apparently wasn’t new) needed to be managed urgently. I spoke to his primary physician on the phone, who suggested we bring him to the ED. I asked him if the ED was the best decision; wouldn’t hospice be a better option? Yes, he said, it would. In fact, he said he had been thinking about this for the past two months. This revelation shocked me. Why, I asked him, had he not said anything to the family? Why was he continuing to recommend and pursue aggressive care in this 81-year-old man who was clearly declining? There was no good answer to this question.

And so it fell to me to tell Ron’s wife that he wasn’t going to get better, and that she had to make a choice: take him to the ED, where he was likely to be admitted to the hospital for another prolonged—and futile—stay, or keep him at home and call hospice. I will admit that I supported avoiding the hospital, and for better or worse, I influenced that decision.

I talked to Ron that morning during the intermittent periods that he was awake. He asked me how I knew he was dying. (A good question, but I just knew, an instinct honed over two decades of caring for patients with cancer.) He seemed genuinely surprised to hear that his condition would not improve. He told me he wasn’t ready to die, he had a lot of things left to do. (I asked him to make a list, but he couldn’t stay awake long enough to accomplish this task.) He said he was afraid. He had only that one morning to process impending death, and he never really got to say all of his goodbyes.

Ron died early that afternoon. I was with him. His death was peaceful. He was in his own home, surrounded by his (completely oblivious) grandchildren. It was what we call in medicine a “good death.”

But his family was angry. They weren’t prepared, they hadn’t known, they didn’t realize it would happen so fast. For the most part, they had all believed that he would get better. More than half of them didn’t make it to the house to say goodbye before he died.

I was angry, too. I was furious at Ron’s care providers that day. They never communicated clearly with him or his wife that he was dying, that his chances of getting better were slim. They didn’t discuss quality of life or goals of care. They offered aggressive procedures that were potentially life shortening and unlikely to be helpful, and the family didn’t feel empowered to decline. Their approach was the opposite of everything I believe in as a palliative specialist, an oncologist, a fellow human being.

Unfortunately, this type of aggressive care at the end of life happens often. We live in “a very peculiar, death denying society.”1 As providers, we spend far too much money on procedures at the end of life (chemotherapy, ICU, catheterizations) that are unlikely to benefit our patients, and in fact are likely to decrease quality of life and hasten death.

Why do we do this? Are we afraid to tell patients the truth? Are we reluctant to admit to ourselves that sometimes medicine has nothing more to offer and that death is unavoidable (for all of us)? Maybe it feels too much like failing to say that there’s nothing more we can do, even when there are other options (such as palliative care and/or hospice) that are far preferable to aggressive medical procedures and prolonged hospital stays.

A few weeks after Ron died, his wife called me. She wanted to talk about the decision we made to keep him home. She wanted to know if this was the right choice: if she had taken him to the hospital that day, would things have been different?

I told her honestly that yes, things would have been different—they would have been horribly worse. Ron would not have lived longer, and he certainly wouldn’t have died at home, in his bedroom, in his recliner, surrounded by his family. We could have painfully prolonged the dying process, by a few hours or a few days at most, but we could not have stopped it. She had made the right decision.

Here is the fact that we cannot avoid: We are all going to die. Whether we cheer for the Eagles or the Patriots, whether we are philosophy professors or medical professionals (yes, even us). I believe it is fair to say that most of us want to die that “good death,” surrounded by our family and friends, not attached to machines in a sterile hospital environment.

As providers, we must take that extra step to be honest with our patients and prepare them for the truth. To do less—to gloss over the inevitable end of life and deny them the opportunity for a good death—is to do our patients a profound disservice. For myself and for my family, I hope that our own health care providers will be honest with us about what medicine can and cannot accomplish in improving all aspects of health.

My pain at losing Ron is mitigated in a small way by knowing that I helped to spare him from discomfort and loss of dignity in the final hours of his life. I am so glad that, as a palliative care provider and cancer physician, I had the training and experience to do this small thing for the man who welcomed me so wholeheartedly into his family.

Complete Article ↪HERE↩!

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‘People have been frightened for me to tell their loved one they’re dying, in case they die quicker’

An intensive care doctor has written an honest book about her experiences.

NONE OF US want to end up in intensive care. But if we do, we should hope we end up with a doctor like Aoife Abbey.

The UK-based Irish doctor has written a book about what it is like being an intensive care doctor, exploring the emotional moments she has experienced. It’s a book that might just change how you think about death – and how you talk to your family about it.

After reading the book, Seven Signs of Life, you’ll want to sit down with your nearest and dearest to discuss what might happen to you should end up needing intensive care. Talking about death or serious illness is a taboo that still persists, but Dublin-born Abbey – who is in her mid-thirties – wants us to confront it.

“I appreciate people need to talk about death more because what I often say is, people come into intensive care, they don’t know they’re going to be there – it’s a surprise to everybody, they’ve had an accident or something,” she explains. “And you say to their family ‘what do you think they would have wanted?’ And the answer is ‘God, I don’t know. We haven’t talked about it.’ Why would you?”

This avoidance can lead to big questions being unanswered. “How would the patient feel about risking being alive and not being able to talk, how would they feel about organ donation? There’s lots of things people don’t discuss, and I think we need to discuss them more,” says Abbey, who graduated from the University of Warwick in 2011.

She advises people to have those difficult conversations with loved ones. “But what I would say is that it can often be difficult to imagine yourself in situations, so people might say ‘oh I would hate to have dementia. I’d rather just drop off.’,” she cautions. “When actually they don’t know that it’s true, because they’re not in that situation. So I think we have to be careful when we have conversations about life and death and what you’d like, in that we’re having general conversations and that we’re still not trying to pigeonhole people into certain decisions.”

Because often people will say ‘I would hate to live this way’ but actually then find an amount of joy and contentment living that way in the end because they have no other option. It is a difficult conversation.

“I guess in Ireland there’s always that thing of people say ‘don’t tempt fate’,” she says. Abbey and her family have had to deal with serious illness themselves. Her brother, Aaron, was a disability rights campaigner and died in October 2018. He was in and out of hospital a lot while the siblings were growing up.

“I’ve certainly had encounters where people have been frightened for me to tell their loved one that they are dying. And not just because they were worried that it would upset them emotionally, which is a very valid worry and I would worry the same thing,” says Abbey.

Because they would feel like that would mean they would die quicker. That crops up quite a lot, people say don’t tell them, because they’ll just give up.

‘It’s routine… until it isn’t’

The book was inspired by anonymous columns Abbey wrote for the British Medical Association, and the stories of the patients in the book are anonymised and amalgamated.

“I always loved intensive care and I loved it because there’s a lot of science there, you get to be specific, you get to care about the numbers,” says Abbey. “You have a lot of facilities, you know the nursing to patient ratio is one to one or one to two, you have all the numbers in front of you, everything is quite scientific.”

At the same time, this is juxtaposed against “the massive uncertainty of not knowing what somebody’s outcome is going to be”.

The level of pressure and responsibility builds the longer you work in intensive care.

There’s always an opportunity to ask for help. You learn as you go along and that’s how we do it, so it was never the case where I had to walk into an ICU and make loads of decisions.

She says that like everything in medicine, “all of this stuff is routine until it isn’t”. Indeed, in the book she details times when things did not go to plan. “If you intubate 100 patients and 99 of them are perfect, easy … it’s the one that’s difficult that’s the issue. So most things are routine, there’s always the potential for it not to be.”

When it comes to errors, the onus is on the doctor to make sure they learn from it.

“There’s nothing that makes you learn more than making a mistake,” she says. “You’re unlikely to ever do it again.”

The main thing is there is a culture, and it’s the right culture, where we don’t blame people when they make mistakes. And we’re supposed to recognise it’s a systems failure, and there’s lots of different explanations for why things go wrong, and it’s rarely one person’s issue; one person’s fault. But at the same time you have to figure out ways as a doctor to still accept and be OK with the fact also that you did make a mistake.

She includes in the book an incident where she missed something on a chest x-ray. It must have been nerve-wracking to write about when she first included it in a Secret Doctor blog post.

“It is still in numbers their most read blog. So it’s … I’m not going to say vindicated but there’s a need for that kind of discussion and people clearly had an interest or it struck a chord with them.”

She has never worked with the HSE, and describes the NHS as something that’s very much woven into national identity in the UK. “You have this service that’s free at the point of care, and people are very proud of it. It’s a very emotive topic,” she says, noting that “it doesn’t matter how angry the media is with the NHS at a given point, patients that I see behave the same. Most of them they are grateful, they’re frightened, they’re scared – they are just people, they are separate from political issues.”

Speaking of political issues, the big one for NHS workers and Irish emigrants like Abbey is Brexit. “If I wasn’t from Ireland I would have a huge amount of uncertainty and I’d be very worried,” she says. “You don’t really know what’s going on. You take so much for granted.”

But it’s not something that she lets take over her work. “I think you just learn to be very focused on what you’re doing. You have to let things in in the moment or else you’re not human, and you can’t engage with someone who’s being very emotional with you with a wall in front of you, because it’s not human and it’s not very nice for them either.”

She has learned to talk to her colleagues and friends about things that affect her, and not keep it bottled up. This is her eighth year in training, and in August 2020 she’ll be able to pursue a consultant job.

In the book she details very tender and emotional moments, such as when a dying man asks her to lift his head up so he can talk to her properly. It’s those intimate moments that leave an impact on her.

“There’s things you get exposed to but I guess in the moment it’s so much about what that person is feeling, you do feel a little bit humbled by the fact that you’re able to give them anything,” she says.

Because they’re going through something that is horrible. And you put it aside until you get home, or until you close the door of the room.

Seven Signs of Life is out now, published by Penguin Random House.

Complete Article ↪HERE↩!

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Here’s What Mortality Can Teach Us about Living in the Moment

“Maybe we need the promise of death to guard against taking life for granted.”

By Sunita Puri

I drove back to my home the next day, pensive. In my kitchen that evening, I picked at a burrito I’d grabbed from a food truck down the street. I drove home starving, but lost my appetite after a few bites. Outside my window, Sunset Boulevard was a river of light, a constant stream of headlights and bike lamps, colorful blinking restaurant signs and fluorescent streetlights. In a shadowed parking lot, dark figures moved quickly toward cars.

Something weighed on me, though I couldn’t articulate it precisely. I wandered around my place, sitting on my couch and moving to a chair, picking up a book and setting it down to watch TV instead. I turned the TV off and considered going to bed early. Maybe a good night’s sleep would fix my restless mind.

And then a question surfaced. What if I suffered a sudden stroke, as Auntie had? Her situation had at first reminded me of my parents’ mortality, but what of my own? Perhaps this crossed my mind because Auntie and I shared a common heritage, and she had suffered a sudden catastrophic event, which could happen to anyone regardless of their age. Maybe the fact that I had faced another transition point, my last week at my first attending job, contributed subconsciously to my mind’s sudden insistence that I consider the meaning of endings. Whatever the reason, I began once again to consider my own answers to the questions I had asked my parents. I knew that I was mortal, that at some point my body would shut down.But though my rational mind knew this, sometimes it felt like mortality didn’t apply to me. I was a doctor. I was there to tend to other people’s mortality. I thought back to all the years I’d clung to the idea of delayed gratification, the times when I’d put my life on hold until I’d completed an educational milestone. If I persisted in my studies, I’d told myself countless times, I’d someday have all the time in the world to enjoy life. I panicked now as I considered what my life would mean if it ended tomorrow in an accident.

What had I learned about death in doing this work? I’d seen that no amount of considering or preparing for it made it easy. Talking about it to prepare frightened loved ones, saying or writing good-byes (if one was lucky and lucid enough to do so), and trying to make peace with a higher power might soothe us and help us. We feared it and sought to control every aspect of it, even considering physician-assisted suicide to give us a sense of agency over an unconquerable aspect of human existence. But if death was not only a medical fact but also a spiritual and sacred passage, then it would always have a certain mystery that was perhaps worth accepting rather than attempting to control. Because we can’t control it. We can’t always anticipate or prepare for it. What we define as a “good death” may not be in the cards for us. But maybe we can use the inevitability of death to live differently. Maybe we need the promise of death to guard against taking life for granted.

I thought back to the many times I feared death as an outcome for my patients, convinced that it was my job to forestall it, to control and manipulate nature. Giving death this much power distorted my view on life—my own, and that of my loved ones and patients. Fighting and fearing death obscured finding meaning in living moments.

What if I regarded my own death with reverence instead of fear? I wondered. Or, even more radically, what if I had some sort of gratitude for the transience of my life? Would it change what I worried and cared about? Wasn’t it necessary to think about this when I was in the midst of building a life? Or rather, living my life? And the more I thought about mortality and what it had come to mean to others and what I thought it meant to me, I realized that life was simultaneously so vast and so small.

It was daybreak after a good sleep and exhaustion as the stars emerged. It was the first crisp bite of an apple, the taste of butter on toast. It was the way a tree’s shadow moved along the wall of a room as the afternoon passed. It was the smell of a baby’s skin, the feeling of a heart fluttering with anticipation or nerves. It was the steady rhythm of a lover’s breathing during sleep. It was both solitude in a wide green field and the crowding together of bodies in a church. It was equally common and singular, a shared tumult and a shared peace. It was the many things I’d ignored or half appreciated as I chased the bigger things. It was infinity in a seashell.

I thought and thought that night, making mint tea and taking a few sips, watching the steam rise from the cup and then disappear. It felt strangely calming to focus on the cooling of heat, to appreciate the fact of temporary warmth. Maybe this, too, was the lesson of mortality: appreciating what we have now, in the midst of life, knowing that it is all a temporary gift.

I didn’t want the sum total of my life to be only a collection of my worldly achievements, boxes of degrees, and lists of patients I’d treated. I thought of what I had pushed off or considered unimportant, the things I promised myself I’d do when I “had the time.” I’d call the friend I had been meaning to call for the past year since I moved to LA. I’d take my mother to the beach in Santa Barbara. I’d take a pottery class. I’d write regularly to my uncles in Mumbai. I’d learn to cook Thai food. I’d adopt a puppy. I’d deal with my fear of bugs and go camping. These all seemed like such cheesy wishes as I thought about them. But these were the things I didn’t want to leave my life without doing. Which meant they weren’t small things.

That night was the beginning of a conversation I continue to have with myself, especially in the moments when the wrong parts of my life feel big and cast shadows over the smaller things. Those are the times I return to my copy of the Gita, having stumbled across a passage that perfectly captured how the fact of death has taught me to live differently:

No matter how strongly you ascribe to the universal delusion that you can avoid pain and only have pleasure in this life (which is utterly impossible), sooner or later you must confront the fact of your inevitable aging and eventual death Therefore, because death stirs people to seek answers to important spiritual questions it becomes the greatest servant of humanity, rather than its most feared enemy.

And there it was—the life lesson, and the death lesson. Vast and small, interlinked. Infinity in a seashell.

Adapted from THAT GOOD NIGHT by Sunita Puri, published by Viking, an imprint of Penguin Publishing Group, a division of Penguin Random House, LLC. Copyright © 2019 by Sunita Puri.

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Facing the end with a friend:

The misperceptions and realities of hospice care

People who work in hospice care are often asked how they can work in a setting where most of the people around them are facing the end of their life — isn’t it “depressing”?

Put simply, hospice is end-of-life care that is both clinical and emotional in nature. It is designed to relieve suffering for the patient and his or her family during the last days of life — typically the final six months to a year. It is initiated only when curative treatments are no longer an option. Hospice workers and volunteers help their patients live their last days in peace and comfort, receiving care that meets their wishes.

For those with limited time remaining, hospice care enables them to focus on enjoying their friends and family during their final days. This is made possible with integrated clinical, emotional and spiritual support from a team of professionals. They include physicians to manage symptoms and pain; nurses who meet with patients and their families to gain a better understanding of their ongoing needs; and certified nursing assistants, including home health aides who provide hands-on care and support, as well as help with the activities associated with daily life.

Volunteer perspectives

Deana Ozuna is a hospice volunteer for Southwest Medical Hospice. She had worked for 13 years in various administrative departments in health care locally and began volunteering in hospice care in 2006. She has encountered the “isn’t it depressing?” question before, and her answer is a resounding “no.”

“I accept things as they are,” she said. “Everyone wants to be cared for. They want to be acknowledged. Connecting with people and seeing smiles on their faces just make me feel so good.”

George Pratt is also a hospice volunteer for Southwest Medical Hospice and has done so along with his wife Patricia since 2008.

“Sometimes I would agree, it can be sad, but I look at it this way — if I have reached the last chapter of my life, I’d like someone there with me. The family also needs relief from the stress and strain of the situation. The end is inevitable, whether you are there or not. Being with them at the end to give them a ray of sunshine is a good thing.”

April Stewart is the chief nursing officer for Nathan Adelson Hospice. She’s been working in hospice for 12 years. “Hospice is who I am,” she said.

Ozuna said that attitude is everything. She said one key is “the ability to be upbeat and smile when you walk into the room. They love it because they so often are around people acting somber and restrained. When I first started doing volunteer work, people were thrilled to see a smile, and they want to talk and learn about me. They are happy to have company.”

Pratt agrees, adding that “you need to be comfortable simply sitting and conversing with people. You need caring and patience.” Pratt said that he often revisits various chapters of his own life and speaks with patients on a wide range of topics. “It’s a matter of being able to listen, to show that you care.”

The job isn’t as depressing as people might think, said Stewart. “This is the most rewarding job I have ever had,” she said. “Hospice patients have the most beautiful stories to share. How lucky are we to be a part of someone’s life at this point in their journey? If we as a team can come together and provide true hospice care in the way it was intended, it is an amazing journey for all involved and can make a very sad, emotional time a little less scary.

Discovering a niche

After working in numerous hospitals and intensive care units, Dr. Dean Tsai, a medical director of hospice and palliative medicine for SMH, felt that medical care was often delivered without asking what the patient’s goals were, especially as patients got sicker and the treatments got more difficult. After helping a patient in respiratory failure to be comfortable as he was compassionately extubated, he sought out more experience in hospice care, leading to working full-time in the field in 2007 and transitioning to his job as medical director in 2008.

“It’s actually the most rewarding job I’ve ever had,” Tsai said. “We get heartfelt gratitude from families every day. Yes, it can be sad, at times, but it’s not depressing and almost always rewarding. I get to listen to patients tell their stories and often talk about what is most important in life.”

Tsai notes that the hospice setting and facing your own mortality can actually be a gift of sorts.

“Much of the time, despite the despair of dying, if one is given the fact that their time is very limited, it allows them to say their goodbyes, prepare their legacy, make amends or speak to loved ones,” he said. “This is considered the gift of hospice.”

For Dr. Lisa Rosenberg, also a medical director of hospice and palliative medicine for SMH, her first hospice experience was volunteering while a medical student. While she originally had planned to be a neonatologist, she realized her calling was for older adults. She later worked 15 years as a geriatrician, spending time with patients near the end of their lives. End of life care was always part of her work. She considers her move to hospice as the best professional decision she’s ever made.

Rosenberg has witnessed that some patients and their families can be good at emphasizing the positive or the negative, depending on their personality.

“Part of it is who we are, the other part is acceptance of the situation and accepting assistance,” Rosenberg said. “Sometimes it is a sorting through of one’s life or relationships. When someone recognizes that their time is limited, it can actually be a gift. We have resources to help with that.”

Stewart received a bit of on-the-job training when beginning her hospice career.

“These skills develop over time. The wife of my first hospice patient in 2007 told me, ‘We like you and we want you to be our nurse.’ I shared with them that I was still new to hospice so I would be in a supportive role,” Stewart said. “She then said to me, ‘If you come and care for my husband, I will show you how to be a hospice nurse.’ It turns out that she had been a hospice nurse for many years before she retired. I learned a tremendous amount from the two of them. Mainly — go into each situation with an open mind and open heart, determine what is needed of you, and make sure it happens. People don’t always need medical intervention. More often than not — they need your hand or your shoulder. Be present.”

Other misperceptions

Tsai and Rosenberg have encountered other misperceptions beyond the “depressing” question, like where the care takes place.

“Hospice is a service, not a place,” said Tsai.

While hospice care can take place in a clinical setting, a lot of hospice care takes place in the home.

“When people are enrolled in hospice, you don’t have to ‘go anywhere,’ and you aren’t necessarily bed-bound,” Rosenberg said. “The vast majority are cared for by family members at home with all the needed medications, equipment and support from our team. We continue to manage disease and symptoms. If a new symptom emerges, and a new medication is needed, we can have it in the home in less than two hours. We deliver great care and when things need to happen quickly, they happen very quickly.”

Stewart said that there is often confusion about medications in hospice.

“Some people still think that hospice just medicates people with morphine to the point that they can no longer be alert and starves them,” she said. “It is so sad and creates a lot of barriers in care. The truth is the patient is the one in charge of their care — that’s what hospice is all about.”

Rosenberg said that hospice care can take various forms. It’s about meeting the needs of patients and their families wherever they are at that point in their journey.

“If someone has stage-4 cancer and says they want to go on a cruise or go to a friend’s wedding, we can help them with these goals,” Rosenberg said. “If someone is electing to pass peacefully at home surrounded by loved ones — which is how death has happened in most of mankind’s recent history — rather than a hospital room, we support that.”

When the end comes

One particular memory has remained with Stewart.

“I once had a patient who was married to his wife for 50-plus years. When he began to transition to his final journey he said to me, ‘Please promise me one thing. I want my beautiful wife to be the last thing I see.’ I promised him I would do my best to make sure that happens. I was providing continuous bedside care.

“The time came for his wife to turn in for the night. He started to exhibit signs that he may pass. I went and got his wife and told him she was there with him. I sat him up and he was able to open his eyes as he took his last breath while holding her hands.

“It was the most beautiful expression of love I have ever seen.”

Pratt said that thinking of the good times is a good approach.

“Whenever I am with a patient, we don’t talk about the end. We talk about the journey — grandkids at the holidays, gratitude for having grandkids,” Pratt said. “One of the military service members I’ve worked with, he’s thankful he came home from the war, thankful that he married, thankful he raised a family, thankful that he traveled with his wife. You focus on the accomplishments and not the end.”

If others are encountering a similar struggle with a friend or family member with a terminal illness, he encourages them to just not give up.

“Treat them no differently than you would a friend. I’ve seen families that came together, some that pulled apart,” Pratt said. “When the whole family pulls together, that is best. It’s a team effort.”

Rosenberg said she has had hard days in her work, but most days are very good. One recurring difficulty she has witnessed is when a patient said they are tired of fighting, and a well-meaning family member said, “you have to fight.”

“That is very hard,” the doctor said. “It’s important to listen to patients, to hear their wishes for this stage of their life and to be respectful of them.”

Rosenberg sees hospice care as a return to a more natural state of care, pointing out that 150 years ago, people typically died at home surrounded by family and friends. It’s often now turned into a medical event.

“Mostly, I think what we do is beautiful. We don’t put patients on the path to dying. They let us come in and support them. We’re all in the same place working to relieve suffering and maximize joy and meaning.”

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Making dying meaningful with an end of life doula

By Julie McClure

My dad died nine years ago after he suffered a long, debilitating illness. It was an outcome we knew was inevitable when he was diagnosed 10 years prior, but that didn’t make it any less difficult to see him slowly lose all of the functions that are necessary for one to live a fruitful life. At the end, I spend two weeks at his bedside, in his home, alongside my family, and there were times where — despite the visits from the wonderful and dedicated hospice nurses, and despite knowing this was ahead of us — the emotional toll we experienced as we honored his directive to finish his life at home without invasive life saving measures was overwhelming.

I know I’m not alone here. That every day, people are dealing with the overwhelming feelings and decisions that accompany the death of a loved one. It’s something we will all experience at some point in our lives, yet it’s a topic we’d rather avoid, that we’d rather not think about or deal with until we absolutely have to.

A couple of months ago I listened to a podcast that examined our stigmas and stereotypes surrounding death, and I was introduced to the concept of a “death doula.” We are generally familiar with the concept of a doula at birth — someone who is not your doctor or midwife or nurse or partner or family member — but is there to provide physical and emotional support for the mother before, during, and after the birth. A death, or end of life doula, provides physical and emotional support for those who are dying, and their families, throughout the death process. It makes so much sense! Of course this needs to be a thing! And indeed it is, right here in our community. Not long after this initial introduction to the concept, I stumbled across the Instagram profile for Threshold End of Life Doula Services, a relatively new service started by Melanie Sheckels, a local hospice nurse.

Sheckels has been a nurse for almost eight years, many of those years with cardiac patients, and has been present for deaths not only professionally, but more recently in her personal life. Her mother passed away just over a year ago, and her nursing experience gave her insight into how to counsel and advocate for her mother throughout the process. “She and I had many in depth conversations about what quality of life meant to her, and she asked me to advocate for her if she was not able to do so for herself. She had an end stage lung disease, and it was very difficult for her to talk and breathe, so she asked the doctor to just ask me to make decisions for her. Those decisions really supported her comfort and her dignity, and it created a lot of peace and healing for us both. So when I look back at that experience, I can see so many ways that could’ve been a really traumatic experience, and I was able to make it a really good one relative to the situation.”

Not all dying people and their families have the benefit of a close friend or family member with a working knowledge of what the dying process looks like, so Sheckels felt that she could use her experience to provide such a service for those families in our community.

“To be perfectly honest, a lot of my experiences around the dying and their families during the end, professionally, have been rather traumatic. Hospital deaths aren’t often pretty. Obviously we do our best, but it’s a cold sterile environment, it’s unfamiliar, and almost nothing that’s happening is within the control of the person who is doing the dying. It’s hard to maintain comfort let alone anything meaningful, ceremonial. I really noticed that all of these experiences had given me this insight and skill for being able to be present for people in a way that really improved their experience.”

So, what does it look like to be an end of life doula? Sheckels emphasizes that it’s really different for every person, every family, but that it ranges from talking through those practical issues such as advanced directives and what different medical interventions look like, to being sort of a life coach. She tries to help each person identify their priorities, and look to those priorities to determine what quality of life looks like for them. Often people have unrealistic expectations of the medical industry, that their loved one is just one intervention away, when this is often not the case. “There’s this idea that if we can then we should. This idea that death is something that has to be fought off. These things put a lot of pressure on the person that is dying.” Sometimes their experience becomes a “prolonged experience of life as a dying person.”

Sheckels helps the person create a care plan called The Best Last Three Months that addresses the emotional, spiritual, physical, and mental domains of life. “We identify what they really need to feel a sense of completion in that area. If you were to pass tomorrow, what would be the hardest thing for you to let go of? Sometimes those things are not really achievable, so we try to tease out what the significance is of that thing and find a meaningful and realistic way to do it.”

Legacy planning is also a part of the discussion. She helps people work through those big questions: “did I matter, how did I matter, and will the people that I’m leaving behind be okay without me?” For the family, she helps them work through planning vigil during active dying, and how she can help facilitate that. It may mean having a doula present for days, 24 hours at a time. Sheckels works with another end of life doula to help accommodate these more intense situations. She can also be a resource for lessening caregiver burnout by listening and allowing that person to express their emotions or staying with their loved one so they can get out and about. 

The concept of an end of life doula has really emerged with the past 10 years, and while there is not yet a certification for the practice, there are various organizations that offer training. Sheckels trained with the Conscious Dying Institute. She explained that many of these organizations are working to develop a certification exam and create an industry standard, and they are also connecting with the National Hospice and Palliative Care Organization to blend their work with hospice work, much like a birth doula works alongside midwives and doctors.

Beyond the personal care of families, it’s clear that Sheckels hopes to educate the community about the dying process. As she states, “A lot of people aren’t ready to approach death in a straightforward manner.” It goes back to fear and avoidance. “We take our fear and denial and put it in a closet and don’t look at it.” Through her work, she hopes to bring that fear and denial out into the open to work through it in an honest way.

I’ve often marveled at those who work with the dying and their grieving families, and I wonder about their well-being — their ability to care for themselves and separate from those intense emotions from time to time. Sheckels eloquently shares her strategy for self-care. “To walk people to and from the gate of mortality, I have to be able to navigate that terrain for myself. I have to regularly undertake personal work to maintain the ability to be present in the moment, to connect deeply with myself and others, and to embrace the impermanence of all living things, up to and including myself. That looks like meditation, journaling, therapy, connecting with nature, and completing my own end of life care planning.”

You can find out more about Threshold End of Life Doula Services through Facebook or Instagram, or reaching out at thresholddoula@gmail.com.

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Listening To Older Patients Who Want To Stop Dialysis

By Judith Graham

Dr. Susan Wong sat down with an 84-year-old patient in the hospital, where he’d been admitted with a flare-up of a serious autoimmune condition and deteriorating kidney function.

The older man told her he wanted to go home; he’d had a good life and was ready for its end. He didn’t want aggressive care — including dialysis — having witnessed his wife and son die painfully in intensive care years ago.

Wong, an assistant professor of nephrology at the University of Washington, was prepared to follow the man’s wishes, but other physicians, eager to pursue tests and treatments, disagreed. For a week, the doctors argued about what to do. Finally, they discharged the patient, who died in hospice care a few weeks later.

Older adults with advanced kidney disease who want to forgo dialysis often encounter similar resistance from physicians, according to a new study in JAMA Internal Medicine by Wong and colleagues at the Veterans Affairs Puget Sound Health Care System in Seattle, where she’s an investigator.

The researchers documented doctors’ reactions by reviewing medical charts of 851 older patients with chronic kidney disease who refused dialysis at the VA health system from 2000 to 2011. In their notes, physicians frequently speculated the patients were incompetent, depressed, suicidal or irrational.

With dialysis, people are hooked up to a machine that removes waste from their blood, usually three times a week for four hours at a stretch. Many older adults find the treatments burdensome, and medical complications are common.

Yet patients who expressed reservations about this treatment were sometimes labeled as difficult or unprepared to confront the reality of their medical condition. “Still in denial about his kidney disease and his need for hemodialysis in the near future — repeat discussions with patient and wife regarding compliance,” one nephrologist wrote. Even when patients were firm about declining dialysis, doctors repeatedly questioned their decisions.

“Clinical practice guidelines for advanced kidney disease are geared toward survival, not what would give patients the best quality of life or the greatest functional capacity,” Wong said. Another factor at play: Nephrologists aren’t trained to ask seriously ill patients what’s most important to them and shape treatment recommendations accordingly. Although most patients want to have such conversations with a kidney specialist, few do so, studies have found.

“We don’t really know how to help patients with serious illness make decisions that are right for them or what to do when they don’t really want dialysis,” said Dr. Jane Schell, an assistant professor of palliative care and nephrology at the University of Pittsburgh.

Conversations about the potential benefits and burdens of dialysis, as well as alternatives, are especially important for frail patients 75 and older who have two or more chronic conditions, such as diabetes and high blood pressure, and difficulty with daily activities such as bathing or walking — a group at risk of experiencing significant complications from dialysis but not achieving longer life.

Healthier older adults have better outcomes on dialysis — a valuable treatment for many people. “We shouldn’t limit access to dialysis based on age, but we should have meaningful conversations about goals of care and make it clear that dialysis is a choice and that patients have alternatives,” said Dr. Bjorg Thorsteinsdottir, an assistant professor of internal medicine and bioethics at the Mayo Clinic.

Options that should be discussed include comprehensive conservative care, which calls for preserving as much kidney function as possible, managing a patient’s health problems, dealing with symptoms such as nausea, swelling, itchiness, pain and breathing difficulties, and preparing for end-of-life care; peritoneal dialysis or hemodialysis at home; and palliative dialysis, a less intensive version of this treatment that keeps people alive for longer but isn’t meant to restore kidney function.

Comprehensive conservative care programs are few and far between (in New York City, Pittsburgh, Seattle, San Francisco and a few other locations), but efforts are underway to change that. With funding from the American Society of Nephrology, Schell and colleagues at the University of Pittsburgh have developed an online conservative care curriculum set to debut in March. Nineteen nephrology training programs for physicians are set to participate.

Also, the Pathways Project, funded by the Gordon and Betty Moore Foundation, is working to make palliative care (also known as supportive care) for patients with advanced kidney disease widely available. (KHN’s coverage of end-of-life and serious illness issues is also supported in part by the Gordon and Betty Moore Foundation.) Dr. Alvin Moss, co-investigator of the project and professor of medicine at West Virginia University School of Medicine, said the project hopes to sign up 10-15 dialysis centers this year.

Sometimes, patients choose a time-limited trial of dialysis with the understanding that they can change their minds down the road.

Cyndy Patton’s 86-year-old mother, Isabel, learned last spring she had advanced kidney disease after going to a Pittsburgh hospital, sickened by repeated bouts of vomiting. Physicians suggested she try dialysis for a few weeks and see if her kidneys might rejuvenate. (The older woman had survived open-heart surgery and a stroke and was living on her own after her husband’s death.)

After a week in the hospital and another week in a rehabilitation center, there was no change: Patton’s mother still needed dialysis. Five weeks later, she confessed to her daughter that the treatment was making her miserable. But giving it up felt like committing suicide, she told Patton — an unacceptable option.

A week later, Isabel had changed her mind. “This is not a life I care to lead, being hooked up to these machines,” she told Patton. “What am I doing this for?” The older woman had consulted with Schell at the University of Pittsburgh about palliative care and hospice care, and she chose hospice.

Dialysis ended and the family gathered at Isabel’s bedside. “She was all ready to die — but she didn’t, and is still living to this day,” Patton said.

It’s an example of how hard it can be to predict what will happen to any given patient with advanced kidney disease. What’s important for the patient to understand is that “it’s not always all or nothing — dialysis or death,” Thorsteinsdottir said.

“Patients have to be very assertive and tell their medical team: This is what I want and what I don’t want,” Moss said. For more information, he suggested people explore the websites of the Coalition for Supportive Care of Kidney Patients (he chairs that organization), the National Kidney Foundation and the American Association of Kidney Patients, and “really spend some time learning about your options.”

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