Death

Hacking the #Hospital #Death. When you Can't #Die at #Home. @TheLizArmy #ACP

“Spoiler alert: we are all going to die

One thing I have noticed as an “empowered patient” is that most people don’t talk about death and dying. We might think about it, but we don’t plan in advance or communicate what we would want if we ever were put in a position where we could not speak for ourselves. I understand. It is an uncomfortable topic.

According to a 2012 report by the California Health Care Foundation, 82% of Californian’s think it is important to put your end of life wishes in writing, yet only 23% have done so. Why is this important?

For one thing, doctors are trained to save people, and without a medical order or an advance directive, a medical team will, by default, try to save your life by all methods possible…

As a relatively healthy 36-year-old, saving my life by all methods possible actually sounds like a good idea! But if I was dying, say from an advanced brain cancer, there is no amount of CPR in the world that is going to cure me of cancer… 

The beginning of the end

…The medical team gave J medication to take away any pain he may experience. They removed his breathing tube, and unhooked all machines except for the one monitoring his heart beat. Quickly, his bed was moved to the sunny room where his friends, including myself, were waiting outside by the window.

As soon as the medical team cleared out we poured in. One person set up the speakers. Another friend was ready with the iPod. The door to the medical area was closed. The rest of us swarmed in around him: hands placed on his hands, his legs, his feet. The room was small, so some hovered around the perimeter and in the doorway to the open air…

We fell silent and the first song began…

A friend said “Orange Sky” held a lot of meaning for J. I had never heard this song, but now I will never forget it. I watched J’s heart rate decrease during the first two-thirds of the song, from the low 30s to zero. The monitor began to ding. A friend pushed a button, silencing the sounds. I held J’s feet.

We listened through the end of the song, with our faces on J’s, tears pouring out of our eyes. I was sobbing. We were devastated.

No one danced.

When the song ended there was silence.

Then the scene from a movie played out: A doctor wearing a white coat walked into the room. He donned a stethoscope and raised the end to J’s chest. His hand moved to various areas of our friend’s chest, and down and around to his stomach. He raised each of J’s eyelids to shine a flashlight into the pupils looking to see if they would constrict. The pupils did not move. The doctor looked at the clock and said, “It is 6:11. Take as long as you need.” He exited the room. End scene.

We all stood looking at J for a long time. Then the music began again… ‘We Could Be Heroes,’ by David Bowie.

The end

The best way to capture your healthcare preferences is by having a conversation with your loved ones, appointing a medical decision maker, and then documenting your preferences in an advance healthcare directive.”

How To Support A Young Person Through Grief

“This early interaction with death is overwhelming, but a pivotal point for learning. This grief acts as a blueprint for not just how these young people process death, but their approach to the many challenges they will face in life.

If you are struggling to help a teenager with their grief, know that your concern is evidence of your care. There is nothing that can make this not awful, so don't make your aim to stop the tears, but rather to support them in what they need. Respecting their needs shows them that you believe in their ability to know what's best for themselves. You're doing good.”

Important Conversations with Experts in the Field about #Dying and #Death. #hpm

Important conversation about supporting quality of life and the need for universal access to Palliative Care - the comprehensive care supporting individuals and families facing a life-limiting illness from time of diagnosis to end-of-life and into bereavement.

Cry, Heart, But Never Break: A Remarkable Illustrated Meditation on #Loss and #Life. @brainpickings

"Now comes a fine addition to the most intelligent and imaginative children’s books about making sense of death — the crowning jewel of them all, even, and not only because it bears what might be the most beautiful children’s book title ever conceived: Cry, Heart, But Never Break (public library) by beloved Danish children’s book author Glenn Ringtved and illustrator Charlotte Pardi, translated into English by Robert Moulthrop.

Although Ringtved is celebrated for his humorous and mischievous stories, this contemplative tale sprang from the depths of his own experience — when his mother was dying and he struggled to explain what was happening to his young children, she offered some words of comfort: “Cry, Heart, but never break.” It was the grandmother’s way of assuring the children that the profound sadness of loss is to be allowed rather than resisted, then folded into the wholeness of life, which continues to unfold". 

The importance of #honest #communication: Talking with #children about #death. #hpm

"Drawing from over 30 years of stories and wisdom from grieving children, teens, and adults, the Dear Dougy Podcast is opening up the conversation about dying, death, and bereavement. As humans, we all experience loss during our lives, but often find ourselves lost and unsure when it comes to navigating the grief that follows. Whether you’re grieving a death, or wanting to support someone who is, the Dear Dougy Podcast can help explore your questions about grief".

Embracing Life While In Palliative Care

"When you come to the end of your life, how do you mark it's last moments?

This short documentary,Embracing Life, aims to take away the stigma attached to death and dying.

Talking to patients in palliative care, the creators of the film enable conversations about how people feel about approaching the end of their life.

'The aim of the project has been to help build the capacity of communities to talk about death and dying, loss and grief, so that those living with a terminal disease can be better supported,' Sam Kelly from Calvary Health Care Bethlehem told The Huffington Post Australia.

The patients interviewed in this film give an incredibly positive perspective on what it's like to face death.

'Once I accepted that death was to come, I've just held everyday and I try to live it to the fullest,' said Tony Steele.

How to Talk About Dying.

“Too many people we love had not died in the way they would choose. Too many survivors were left feeling depressed, guilty, uncertain whether they’d done the right thing.

The difference between a good death and a hard death often seemed to hinge essentially on whether someone’s wishes were expressed and respected. Whether they’d had a conversation about how they wanted to live toward the end…

We still need to transform the cultural norm from not talking about how we want to live at the end of life to talking about it. The real work to close the gap is not just for doctors and patients. It’s for mothers and daughters, husbands and wives, families and friends. We have to bring people to the kitchen table to talk with those they love to have the conversation. And to do this before there is a crisis. Not in the I.C.U.”

"I See Dead People". #Dreams and #Visions of the #Dying.

"Dr. Christopher W. Kerr is the Chief Medical Officer at The Center for Hospice and Palliative Care, where he has worked since 1999. His background in research has evolved from bench science towards the human experience of illness as witnessed from the bedside, specifically patients’ dreams and visions at the end of life. Although medically ignored, these near universal experiences often provide comfort and meaning as well as insight into the life led and the death anticipated".

Against #Grieving in Silence. ~Rachel Stephenson

"When loss enters our lives, understanding how to confront it can be difficult. Rachel Stephenson learned a valuable lesson after a difficult loss and shares her wisdom on what it means to grieve meaningfully.

Rachel is an educator, administrator, and writer. For the past 7 years, she has worked for The City University of New York (CUNY) designing and implementing innovative, high-performing programs focused on civic engagement, workforce development, and youth development for a range of inspiring CUNY students. Launching the CUNY Service Corps in 2013 is one of her proudest professional accomplishments. Rachel holds a Master of Fine Arts degree in Nonfiction Writing from Columbia University’s School of the Arts.

This talk was given at a TEDx event using the TED conference format but independently organized by a local community".

Meeting #Death with Words.

"In richer parts of the world, death is likely to arrive in a nursing home, or in a hospital—precisely where we most dread spending our dwindling hours. The exit from life, as Atul Gawande observes in his treatise “Being Mortal,” has become overly medicalized in recent decades, causing us to forget centuries of wisdom. We have ended up with a system that treats the body while neglecting its occupant. But the discontent is mounting, Gawande says: 'We’ve begun rejecting the institutionalized version of aging and death, but we’ve not yet established our new norm. We’re caught in a transitional phase'."

Reframing Our Relationship to That We Don’t Control. #Death. ~ OnBeing

“ ‘Let death be what takes us,’ Dr. BJ Miller has written, ‘not a lack of imagination.’ As a palliative care physician, he brings a design sensibility to the matter of living until we die. And he’s largely redesigned his sense of own physical presence after an accident at college left him without both of his legs and part of one arm. He offers a transformative reframing on our imperfect bodies, the ways we move through the world, and all that we don’t control.”

When a child is dying, the hardest talk is worth having. #PedPC

"Conversations about the end of life are hard for most people. But they can be especially sensitive for parents guiding children through terminal illnesses. They often struggle to discuss death because they don’t want to abandon hope; children, too, can be reluctant to broach the subject.

But pediatric specialists say the failure to discuss death — with children who are old enough to understand the concept and who wish to have the conversation — can make it harder for all involved.

A conversation could help children who are brooding silently suffer less as they approach death. It would also ensure parents know more about children’s final wishes".

"Before You Know It Something's Over". The #Death of a #Parent.

"I want to talk to you about how it feels to spend your whole life grieving, to have your ghosts precede your actuality, to feel that nobody you know will ever truly know you because they never knew him. To recycle fourteen years of material like a song that never gets old, because you’re just so frustrated that there’ll never be a new album, even though everybody else is probably sick of the song and likes your new songs so much better. I want to talk to you about how I got free".

A thank you letter to David Bowie from a #Palliative #Care doctor

“So… to the conversation I had with the lady who had recently received the news that she had advanced cancer that had spread, and that she would probably not live much longer than a year or so. She talked about you and loved your music, but for some reason was not impressed by your Ziggy Stardust outfit (she was not sure whether you were a boy or a girl). She too, had memories of places and events for which you provided an idiosyncratic soundtrack. And then we talked about a good death, the dying moments and what these typically look like. And we talked about palliative care and how it can help. She told me about her mother’s and her father’s death, and that she wanted to be at home when things progressed, not in a hospital or emergency room, but that she’d happily transfer to the local hospice should her symptoms be too challenging to treat at home.

We both wondered who may have been around you when you took your last breath and whether anyone was holding your hand. I believe this was an aspect of the vision she had of her own dying moments that was of utmost importance to her, and you gave her a way of expressing this most personal longing to me, a relative stranger.

Thank you”.

Facing life’s end with grace. #EOLC #HPM

"In the end, the more people are ready to have the talk, the more likely it is that the medical industry will offer care that accounts for the vast, nuanced, and fluid decision points facing patients who are short on time.

Dying, after all, is complicated, hard business, and dying well is more complicated, and harder".

There is no inevitability in life that we are less prepared for than #death. #HPM

"There is no inevitability in life that we are less prepared for than death. Where is our guidance for this universal event that every one us will face? Why don't we teach people how to die? Why don't we teach people how to live after someone they love has died? We need to change this. We need to equip people with the tools they will need to cope. This is part of what end of life doulas do. We talk about death, with the living and the dying".

"My Marriage Didn’t End When I Became a Widow". ~ Dr. Lucy Kalanithi

"One night recently, alone in bed, I read “A Grief Observed” by C.­S. Lewis, and I came across the observation that “bereavement is not the truncation of married love but one of its regular phases.” He writes that “what we want is to live our marriage well and faithfully through that phase, too.” Yes, I breathed. Bereavement is more than learning to separate from a spouse. Though I can no longer comfort Paul, the other vows I made on our wedding day — to love Paul, to honor and keep him — stretch well beyond death. The commitment and loyalty, my desire to do right by him, especially as I raise our daughter, will never end". 

Lucy Kalanithi is an internist at Stanford University’s Clinical Excellence Research Center. She wrote the epilogue to her late husband Paul Kalanithi’s forthcoming book, “When Breath Becomes Air.”

Explaining Cremation to Kids.

"Of course, this is a tough concept for kids this age to comprehend but it's much worse to shield them from this ritual".

"You don't get over bereavement, you get on with it": Mumsnet.

"Have the boys 'got over the worst of it'? Who knows? We take every day as it comes. We are on a journey that takes us on a bumpy and unpredictable ride, with little in the way of helpful signage. Just because we have faced a huge trauma, does not mean that we are exempt from facing further difficulties en route".

What Would You Write If You Knew You Were Dying?

This talk was given at a local TEDx event, produced independently of the TED Conferences. Writing for the future. Recording conversations Rachel has a passion for honest conversations, and recognises the precious and precarious nature of life. She supports families when an adult develops cancer and helps those at the end of life to tell their story.

"When life runs out of tomorrow's, what you realize you've got is today" ~ Rachel L. Smith

Before the tomorrow's run out, use this opportunity today to think about what you will you say to your loved ones... And then say it...