‘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!

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

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.

Complete Article HERE!

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.”

Complete Article HERE!

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.

Complete Article HERE!

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.”

Complete Article HERE!

A doctor in California used a video-link robot to tell a patient he was going to die.

The man’s family is upset

By Dakin Andone and Artemis Moshtaghian

Preparing for the death of a loved one is difficult no matter the circumstances.

But Annalisia Wilharm said she never expected a doctor would deliver the bad news about her grandfather via a video screen on a robot.

Wilharm was sitting by her grandfather’s bedside in the ICU of the Kaiser Permanente Medical Center in Fremont, California, last Monday night when the machine rolled into their room and a doctor, appearing via live video link, offered his grim prognosis. Her grandfather Ernest Quintana, 78, died the next day.

“I think they should have had more dignity and treated him better than they did,” Wilharm told CNN. “No granddaughter, no family member should have to go through what I just did with him.”

Wilharm told CNN her family knew that her grandfather would die soon. But they’re angered by the way the situation was handled and how the news was delivered. She said she and her family hope no one else receives the same treatment.

Ernest Quintana died after being told by a doctor who visited him via robot that there were no more treatment options left.

“I was so scared for him and disappointed with the delivery,” Wilharm said, choking up. “And I could tell by the look on his face what that did to him.”

A spokeswoman for the hospital offered “sincere condolences to the family” in a statement sent to CNN.
“We take this very seriously and have reached out to the family to discuss their concerns,” said Michelle Gaskill-Hames, a senior vice president and area manager of Kaiser Permanente Greater Southern Alameda County.

“Our physicians and nurses were in regular, in-person communication with the patient and family about his condition from the moment he entered our hospital,” she added. “The evening video tele-visit was a follow-up to earlier physician visits — it did not replace previous conversations with patient and family members and was not used in the delivery of the initial diagnosis.”

For years, Quintana had lived with chronic obstructive pulmonary disease, a progressive lung disease that make makes it hard to breathe. It includes emphysema and chronic bronchitis.

Last Monday, doctors at the hospital conducted tests to assess the state of Quintana’s lungs. That evening, Wilharm told her mother and grandmother — Quintana’s wife of 58 years — that the pair should go home and get some rest.
Soon after a robot with a video screen came into the room, accompanied by a nurse who remained silent. A doctor on the screen began speaking to them.

Wilharm said she had no idea who the doctor was or where he was located.

She filmed the interaction on her phone as the doctor relayed the results of her grandfather’s tests.
In the footage viewed by CNN, the doctor on the screen tells Quintana, “Unfortunately there’s nothing we can treat very effectively.”

The doctor explains they can give Quintana morphine to make him more comfortable, but that would make breathing more difficult.

Wilharm then tells her grandfather the doctor is recommending hospice care at home.

“You know, I don’t know if he’s going to get home,” the doctor says, adding that the best treatment plan at that point was to begin focusing on Quintana’s comfort.

Wilharm told CNN that at that point she had to call her mother and grandmother so they could get back to the hospital.

“It didn’t matter (to the hospital) that his wife of 58 years wasn’t there for that,” she said.

Wilharm told CNN that her family was under no illusions about her grandfather’s condition.
“We knew that we were going to lose him,” Wilharm told CNN in a phone interview Saturday. “Our point is the delivery (of the news). There was no compassion.”

When her grandmother returned to the hospital, she asked the nurses about the robot. According to Wilharm, they explained the hospital was small and the robot was used to make rounds at night.

Gaskill-Hames, the hospital spokeswoman, said the health care provider is “continuously learning how best to integrate technology into patient interactions.”

“In every aspect of our care, and especially when communicating difficult information, we do so with compassion in a personal manner,” she said, adding that the term “robot” is “inaccurate and inappropriate.”

“This secure video technology is a live conversation with a physician using tele-video technology, and always with a nurse or other physician in the room to explain the purpose and function of the technology,” Gaskill-Hames added. It “allows a small hospital to have additional specialists such as a board-certified critical care physician available 24/7, enhancing the care provided and bringing additional consultative expertise to the bedside.”

Wilharm told CNN that a doctor had visited Quintana in person earlier in the day.

Wilharm said the in-person doctor was “very sweet” and held her grandfather’s hand as she spoke with him about hospice care and his options.

Gaskill-Hames said the hospital does not encourage the use of technology to replace personal interactions between patients and health care workers.

“We understand how important this is for all concerned, and regret that we fell short of the family’s expectations,” she said.

Wilharm agrees.

“That was one of the worst days of my life,” she said.

Complete Article HERE!

End-of-life doulas bring guidance and strength at a time of need

End of life doula Susan Capurso

By Erika Prafder

After her 52-year-old husband died of the flu in 2014, Susan Capurso from Long Island, New York was left feeling helpless, angry and unsupported.

“We weren’t prepared at all,” says Capurso, who had been married for 25 years. “We didn’t have hospice, as my husband’s illness was not a long-term one. At the end, there was no one standing next to me saying ‘this is what is happening now. He’s going to pass within hours and this is what to expect.’ I’m detail-oriented, I wanted to know.”

Interested in offering non-medical, holistic and emotional support to the dying and their families, Capurso began to research the work of an end-of-life doula. Traditionally, a doula is a layperson who aids a woman in childbirth and newborn aftercare alongside medical staff. In the same way, end-of-life doulas are supportive to hospice; they do not take the place of it.

To further her interest in this growing field, Capurso began volunteering for a hospice and enrolled in the certificate-bearing Doulagivers training school of New York City (DoulaGivers.com), a school started by Suzanne O’Brien, formerly a hospice and oncology nurse.

O’Brien was inspired when, on a trip to Zimbabwe in 2012, she saw how local people were trained to sit with a person who was dying and “guide” them through their journey. While the country lacks basic needs and medicinal care, “they did have neighbors sitting with a family member who is dying — holding that space for them,” says O’Brien. “The power of presence might be the most powerful medicine we have, but we’ve lost that in our health care system. We’re all in this together. We should support each other however we can.”

On O’Brien’s course, “training is individualized,” says Capurso. “Weekends are spent with [O’Brien] and everything else is done online through a series of live webinars and modules.”

The three-pronged curriculum covers end of life phases from diagnosis to stabilization, transition and disease process. Elder care assistance and advanced directive (when a patient determines their end of life wishes while they are still able to do so) is also covered.

“This covers the important papers you really need to button up, such as health care proxy, living will, do not resuscitate,” says Capurso.

Practical help is also part of a doula’s workload.

“We come into homes, prepping meals for the week, doing laundry and going through each room to ensure it’s safe,” says Capurso.

Beyond these basics, Capurso extends her healing work to include the creation of a legacy book with patients.

“It’s something we work on together. We go through your life, adding personal stories, photographs and memories,” says Capurso. “It’s not just something you’re leaving for family and friends, it really is therapeutic — bringing light, love and closure.”

Helping patients to compose letters to loved ones and assisting families with writing memorials and eulogies are also customary tasks.

Having your “funeral” before you die is another trend that doulas can help with.

“Why not have a memorial before you go?” says Capurso. “Let’s laugh, say our goodbyes and be happy. It doesn’t have to be scary. A celebration with the dying person there shapes the person’s life and offers closure.”

Carrying out a dying person’s wishes is also a top priority for Capurso.

“I can help find a way for the last days to meet a dying person’s desires. Maybe starting to contact family members to come in for a final visit, asking them to write a memory down on a card and placing it in to a basket, incorporating nice music, candles or aromatherapy,” says Capurso.

This line of work is especially well-suited for hospice volunteers who want to do deeper work, as well as healers, reiki practitioners, massage therapists and acupuncturists. It’s also beneficial to have a genuine interest in educating the community on the resources available for them.

“You don’t go looking for this career, it calls out to you,” she says.

The demand for such caregivers is overwhelming. By 2020, an estimated 117 million Americans will need some caregiver assistance.

“Doulas fit in to the personal companion model, which is a billion-dollar industry serving our elder population,” says Deanna Cochran, RN. Cochran is the founder and CEO of Quality of Life Care, LLC, in San Marcos, Texas, an end-of-life training and certification agency. She’s also the first chair of the End of Life Doula Council within the National Hospice and Palliative Care Organization.

“The dying have specific needs and fears that need addressing,” she says. “As we evolve, the field is ripe for training people to be skillful at this — it’s a movement that’s growing. There’s plenty of room for every single hospice in this country to have at least one part-time doula. Within the next 10 to 15 years, opportunities will also become prevalent at nursing homes and assisted living centers.”

Fortunately, training is more prevalent now.

“There are over 10 certification programs, ranging in price from $700 to $2,500,” says Cochran, who offers a fast-track, 16-week program. “You can learn the skills, but you need to do the work by volunteering through hospice, nursing homes, hospitals. There’s an art to it.”

Complete Article HERE!