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Dying & Death Talk

Looking at dying and death for what it is: a part of life.

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Caregiving

When the Hospice Care System Fails

Courtesy of TheNewYorkTimes.com | By Daniela J. Lamas, M.D. | Photo by Ryan McVay | Originally Published 10.17.2018 | Posted 11.17.2018

Let me start with an apology.

When I saw that your 90-year-old father was in our emergency department, after being resuscitated while on home hospice, I assumed that I understood what had happened. As a critical care doctor, I have cared for patients whose families have changed their minds at the last minute, grasping on to impossible hopes rather than face the reality of death.

On the phone with the E.D. physician, I sighed. “Family?” I asked.

“Must have reversed the D.N.R.” — the do-not-resuscitate order that is standard for a patient on hospice care. “They’re on the way,” she said.

I told her I’d head down. I was fairly sure that nothing was going to change. But before we took this patient to the intensive care unit, tethered to machines he had never wanted, I wanted to begin to talk with you.

There your father was. He was so pale. A ventilator breathed for him. His body, wasted by cancer, flopped like a rag doll. I touched his fingers and they were cool, vessels clamped down by the medicines keeping his blood pressure from plummeting. I imagined caring for him in the I.C.U., trying not to hurt him even more. Continue reading “When the Hospice Care System Fails”

A wise guide helped us with the living before and after my father’s death

Courtesy of TheGuardian.com | By Priscilla Ennals | Photo by Robert Daly/Getty Images | Originally Published 07.21.2018 | Posted 08.28.2018

The process of dying is so removed, sterile, and disconnected from living that it is hard to know what to do when confronted with a terminal diagnosis. Discussions with the medical experts commonly offer little guidance in questions that loom large, and for loved ones, equally, there is little direction. Death doulas – wise guides to dying – may offer a way through for those who are lost.

My father recently died from MND. I sat with him 21 months before his death in the office of the neurologist as the diagnosis was revealed. The specialist was kind and sorry, but it was a blunt talk. People live typically less than two years. Dad had little idea of the reality of what was to follow but had heard of Neale Daniher and his fight against the “beast”. The terminal nature of this disease didn’t really land for him. He had seen off a brain tumour, bowel cancer (twice), a stroke. He had things to do, people to help. He reflected on how lucky he had been in his life and still felt luck was on his side.

After crying together and alone, I then wondered what to do. Google and a scan of the medical literature was informative. The news wasn’t great. How do you keep living while death and loss show themselves on a daily basis? Can’t do up buttons, hold a cup, drive, swallow without choking. How do you deal with the practical, existential, relational, emotional and spiritual?

Continue reading “A wise guide helped us with the living before and after my father’s death”

I Know You Love Me — Now Let Me Die

Courtesy of NextAvenue.org | By Louis M. Profeta, MD | Photo Credit: Adobe Stock | Originally Published 03.15.2017 | Posted 03.24.2018

(This piece appeared previously on Dr. Louis Profeta’s LinkedIn page.)

In the old days, she would be propped up on a comfy pillow, in fresh cleaned sheets under the corner window where she would, in days gone past, watch her children play. Soup would boil on the stove just in case she felt like a sip or two. Perhaps the radio softly played Al Jolson or Glenn Miller, flowers sat on the nightstand, and family quietly came and went.

These were her last days. Spent with familiar sounds, in a familiar room, with familiar smells that gave her a final chance to summon memories that will help carry her away.

She might have offered a hint of a smile or a soft squeeze of the hand but it was all right if she didn’t. She lost her own words to tell us that it’s OK to just let her die, but she trusted us to be her voice and we took that trust to heart.

A day does not go by where my partners don’t look at each other and say, “How do we stop this madness?”

You see, that’s how she used to die. We saw our elderly different then. Continue reading “I Know You Love Me — Now Let Me Die”

Learning to live without my mother

Courtesy of TheWeek.com| By Neda Semnami | Originally Published 05.11.2013 | Posted 03.23.2018

It had been a long winter of epic storms. Spring was coming.

It was that sweet time in D.C. when the trees erupt in an annual pink-blossomed explosion. But I was inside strong-arming my mother, bullying her to put on a dress and take a drive with her brother and sister.

“You’re beautiful,” I said.

“I am?”

“You are.”

“Oh, Nedu. I’m not,” she said.

My mother was dying. And she was all bony elbows, jutting clavicles, and sunken cheekbones.

Still, she was as beautiful as she was tired and — God, my poor Mom — that day she was exhausted. She would have been more comfortable sleeping with a fresh Dilaudid patch, but I was determined to cheer up a woman who, whether we knew it or not, had only a week left to live.

That day, I wheeled Mom into the bathroom. I brushed her hair. Changed her bandages. Doled out pills. I rubbed lotion over her chest and back, down her arms. I carefully applied a bit of lipstick and pinned her curls from her face. Continue reading “Learning to live without my mother”

More people are adopting old, sick dogs to keep them from dying alone and afraid

Courtesy of the Charlotte Observer | By Karin Brulliard/Washington Post | Photo By Steve Forst | Originally Published 03.05.2018 | Posted 03.14.2018

When a German Shepherd rescue organization posted Elmo’s photo online last fall, it made no effort to mask the dog’s problems. He wore a cone around his neck to prevent him from licking the large open sore on his hip. His fungus-ridden feet were swollen. His graying, 11-year-old face held a pathetic, ears-to-the-ground gaze.

Steve Frost, a retired fire captain in Northern California, said he saw the photo and thought Elmo “looked like hell.” He immediately decided he wanted the dog.

Four months later, Frost sits by his fireplace every morning and evening and gives Elmo four pills for his various ailments, “like an old man.” On Wednesday morning, he took Elmo in for prostate surgery. Frost, who had not owned a dog in several years, is now ushering one through its final years of life, which he says he figures will be “a lot better than living in a kennel.”

rost, 59, met Elmo through the Thulani Program, one of a growing number of animal organizations focusing on adopting out older dogs, or “senior dogs” that are typically 7 years or older. Their age makes them some of the hardest-to-place animals in a society that still adores romping puppies, although that is changing as books on elderly dogs and social media campaigns convince pet-seekers that the mature pooches often come with benefits, such as being house-trained, more sedate and less demanding of people with busy lifestyles. Continue reading “More people are adopting old, sick dogs to keep them from dying alone and afraid”

My Girlfriend Is Dying Of Terminal Cancer, But Here’s Why I Still Feel Lucky

Courtesy of HuffPost.com | By Roy Cross | Originally Published 02.14.2018 | Posted 03.09.2018

I’m a lucky guy.

Those are often my closing words after I’ve shared the terrible news with someone that my girlfriend, Susan, has an aggressive, incurable cancer. Most people are taken aback by that comment, and I’m sure many walk away from the conversation thanking their lucky stars they are not me. But with Susan, dying has brought all sorts of unexpected gifts.

Susan and I have been together for six years. Both single parents, we were teaching at post-secondary institutes and pursuing creative careers when we met online. It’s been a wonderful, loving adventure — with some tough moments thrown in. But of all the challenges in my life, I think Susan’s diagnosis of a terminal uterine leiomyosarcoma has offered me the greatest opportunities to know love, to grow and evolve as a person and to be happy.

When Susan was getting sick but was not yet diagnosed, I did my best to remain positive and optimistic, despite my anxiety and depression. However, Susan’s approach to her diagnosis was remarkable from the very first moment, and this experience has shown me the limitless power of love. I sensed right away, almost a year ago, that I was in for an awakening.

My father died of cancer when I was 11. I felt angry and abandoned. I became bitter for a long, long time. I am so grateful that I do not feel abandoned by Susan’s impending death. I had deep sadness, and the grieving was almost immediate, but I never really had any of the expected anger or denial or wishful thinking. By skipping all of that, Susan and I were able to mindfully, with gentle love, begin the journey to the end of our relationship.

Continue reading “My Girlfriend Is Dying Of Terminal Cancer, But Here’s Why I Still Feel Lucky”

The long goodbye: Coping with sadness and grief before a loved one dies

Courtesy of Kaiser Health News | By Judith Graham | illustions by iStock/Getty Images Plus |Originally Published 12.21.2017 | Posted 02.20.2018

For years before her death at age 96, Nancy Lundebjerg’s mother underwent a long, slow decline.

Arthritis made it hard for Margaret Lundebjerg to get around. After two hip surgeries, she needed a walker when she was out and about.

Incontinence was a source of discomfort, as was the need to rely on aides to help her perform daily chores.

Little by little, Margaret became frail and isolated. “There was a sadness to seeing my mother’s circle of life become diminished,” said Nancy Lundebjerg, 58, CEO of the American Geriatrics Society, who wrote about her experiences in the organization’s journal.

The anguish accompanying aging isn’t openly discussed very often, nor is its companion: grief. Instead, these emotions are typically acknowledged only after a loved one’s death, when formal rituals recognizing a person’s passing —the wake, the funeral, the shiva — begin.

But frailty and serious illness can involve significant losses over an extended period of time, giving rise to sadness and grief for years.

The loss of independence may be marked by the need to use a walker or a wheelchair. The loss of a cherished role may dishearten an older woman who is no longer able to cook dinner for her extended family, gathered at the holidays. The loss of shared memories may be painful for adult children when their older father is diagnosed with dementia. And these are but a few examples. Continue reading “The long goodbye: Coping with sadness and grief before a loved one dies”

Dr. Atul Gawande: Make End Of Life More Humane

Courtesy of Fresh Air / NPR.org |By Antul Gawande, MD | Originally Published 07.29.2010 | Posted 02.03.2018

https://www.npr.org/player/embed/128828629/128845071

Medical professionals need to build a system that focuses on how to help patients achieve what’s most important to them at the end of their lives, says Dr. Atul Gawande.
iStockphoto.com  

Dr. Atul Gawande began researching hospice and end-of-life care options because he says he didn’t know how to broach the subject of death with his terminally ill patients.

The surgeon and New Yorker staff writer writes about the difficulties faced by medical professionals who must decide when to stop medical interventions and focus on improving the final days of life in his article “Letting Go” in the Aug. 2 New Yorker.

Gawande tells Fresh Air‘s Terry Gross that physicians are hesitant to tell patients that there’s nothing else they can do, even if statistics show procedures are unlikely to work.

“Our system of medical care has successfully created a multitrillion-dollar system for dispensing lottery tickets — the lottery ticket that you could get this longer life,” Gawande says. But he says it has not prepared people for the likelihood that physicians aren’t good at preparing patients whose lives will not be prolonged by medical treatment. “So we’ve failed to meet the other needs people have, other than just prolonging life.”

Atul Gawande is a staff member of Brigham and Women’s Hospital and the Dana-Farber Cancer Institute. His books include Better and Complications.
Fred Fieldter
Gawande says medical professionals need to build a system that focuses on how to help dying patients achieve what’s most important to them at the end of their lives.

“We want to be with others and family. We’d like to be mentally alert as much as possible. We’d like to avoid suffering, and we’d like to spend our last time doing stuff we care about and not just taking in treatments that make us suffer,” he says. “As we face an incurable disease, what can we do to make it more likely that you’ve identified what’s important to you — how you want those final months to go — and then help you achieve it?”

Atul Gawande is a staff member of Brigham and Women’s Hospital and the Dana-Farber Cancer Institute. He is also a staff writer for The New Yorker. His books include Better, Complications and The Checklist Manifesto: How to Get Things Right.

How One Woman Changed The Way People Die In Mongolia

Courtesy of NPR.org | By Rae Ellen Bichell | Illustration by Angie Wang | Originally Published 11.05.2015 | Posted 01.26.2018

 

Dr. Odontuya Davaasuren has one goal: to improve the way people die in Mongolia.

“My father died of lung cancer, my mother died, my mother-in-law died because of liver cancer,” she says. “Even though I was a doctor, I could do nothing.”

The feeling of helplessness, and the unnecessary pain her relatives suffered, is what Davaasuren has set out to fix. She has white hair because of it, says the family doctorand professor at the Mongolian National University of Medical Sciences in Ulaanbaatar. “It’s very hard work.”

Her efforts have earned her the title “the mother of palliative care in Mongolia.” And they’ve transformed the way people die.

In global rankings on quality of death released this fall by the Economist Intelligence Unit, Mongolia stood out. It’s number 28 on the list. “Some countries with lower income levels demonstrate the power of innovation and individual initiative,” the report noted, citing Mongolia for “rapid growth in hospice facilities and teaching programs.” Continue reading “How One Woman Changed The Way People Die In Mongolia”

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