They Brought Cookies: For A New Widow, Empathy Eases Death's Pain

"So I'll tell you the positive effect and you know it already: empathy is pain's best antidote. It is, says Robert Burton in his astonishing Anatomy of Melancholy, 'as fire in Winter, shade in Summer, as sleep on the grass to them that are weary, meat and drink to him that is hungry or athirst.'

The pain doesn't go away; but somehow or other, empathy gives the pain meaning, and pain-with-meaning is bearable. I don't actually know how to say what the effect of empathy is, I can only say what it's like. Like magic".

I'm Trying to Die Here. ~ Rev. Dr. Carla Cheatham

"Our goal is to maximize quality of life for whatever quantity naturally remains for everyone involved. Knowing that we are the interlopers, we strive to adapt to the personality and culture of the person receiving hospice as well as that of their entire family. We pay attention. We listen to stories. We pick up queues and share them with our team members so we can all work to provide as little intrusion as possible as guests in the home (whether “home” is one’s own or a room in a facility)".

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.”

In #Palliative #Care, #Comfort is the Top Priority. #HPM

"Although 40 percent of their palliative care patients can expect to be cured, 'there clearly still are both patients and oncologists who have an inappropriate association in their minds,' he said. 'They still associate palliative care with giving up.'

To the contrary, palliative care can help patients live fully, regardless of their prognoses."

When Your Loved One Is Ready for #Hospice Care - and You Aren't. #HPM

“And I had a lot of questions about hospice care, including whether I could stop it if I changed my mind later. (He told me I could stop it at any time, for any reason, and that if I changed my mind again I could resume the services.) The conversation was incredibly stressful. At one point I realized I was holding my breath.

After answering all my questions, Doug looked at me kindly and said, ‘You know, Marie, the real question for the caregiver is how to help the patient have the highest possible quality of life in the time that is remaining.’

That completely changed my thinking about the situation. It gave me a new and positive goal - to bring Ed as much happiness as possible. It led me to think about all the special things I could do for Ed -- visiting him more often, taking my little Shih Tzu to see him, having that violinist come back and play another concert, reading to him from the newspaper, and buying him even more of the stuffed animals he loved so much.”

Looking Forward. ~ PhotoGrief. #Grief #Bereavement

Photos by Jimmy Edmonds

“These are montages that I make using my son Josh’s image against a background – these are from Mexico while we were filming of the Day of the Dead last year. The original image is of Josh (he died in 2011 aged 22) pretending to be asleep, but it has become one of the main pictures that I remembering him by. What is important for me is that it represents a continuing relationship that I have with him as I re-craft his picture as part of my on going work as a photographer and filmmaker. Photographs we have of our dead love ones are always in the past from when they were still alive – and in that sense they are stuck in history. What we teach on our photography course is that by reworking them and creating new photos we can re-invent the deceased as part of our present lives – its a very cathartic process and does a lot for my own healing – instead of always looking ‘back’ at photos as a way remembering him I am now looking ‘forward’ to the next image I will make with him in it.”

The Gift of Bad News. #Dying #Coping #Healthcare

"We’ve all been told we should live each day as if it were our last, but how many of us truly can? Life is a journey. We’re in the middle of it. When we hear the news, we know — for the first time really know — our journey will end. What do we want from our doctors at that moment? What do they want from us? No matter where we sit, we are infinitely far apart and impossibly close. They have given us something no one else on earth has ever given us before, and we are transformed."

A New Vision for Dreams of the #Dying. #eolc #hpm

"Dr. William Breitbart, chairman of the psychiatry department at Memorial Sloan Kettering Cancer Center, who has written about delirium and palliative care, said that a team’s response must also consider bedside caregivers: “These dreams or visions can be interpreted by family members as comforting, linking them to the legacy of their ancestry.

But if people don’t believe that, they can be distressed. ‘My mother is hallucinating and seeing dead people. Do something about it!’ Dr. Breitbart trains staff to respect the families’ beliefs and help them understand the complexities of delirium.

Some dream episodes occur during what is known as 'mixed-state sleep' — when the boundaries between wakefulness and sleep become fragmented, said Dr. Carlos H. Schenck, a psychiatrist and sleep expert at the University of Minnesota Medical School. Jessica Stone, the teenager with Ewing’s sarcoma, spoke movingly about a dream of her dead dog, Shadow. When she awoke, she said, she saw his long, dark shape alongside her bed.

Dr. Banas, the neurologist, favors the phrase end-of-life experiences. 'I try to normalize it for the family, because how they perceive it can push them away from that bedside or bring them closer,' she said."

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

Dr. Christopher Kerr speaks at a 2015 TEDx event Buffalo, New York. 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.

"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".

This is not Casualty – in real life #CPR is brutal and usually fails. #ACP #Awareness

"Modern medicine, however, still shies away from discussions about natural death and dying, and is more comfortable in the realms of what can be done. Doing something always trumps doing nothing. Healthcare professionals have become willing interventionists, and we cannot stop meddling, interfering and attempting to fix.

Many people I speak to presume that if the label “Not for CPR” or “DNACPR” (Do Not Attempt CPR) is added to their notes, this might preclude them from other resuscitative treatments such as antibiotics, fluids and blood transfusions. Dispelling this myth takes time and reassurance. Patients can still have active, resuscitative measures if they become increasingly unwell, but remain not for CPR for when their heart stops".

A Loud Voice: Dear Dead Mother. Conversations about #life, #love, and #loss with the mother I've never known. #Grief #Bereavement

"Silence is not always self-imposed.  Sometimes those of us who want to grieve out loud feel immense pressure to stay quiet and move on.  This pressure can be communicated to us in so many ways – when people look away, when words are whispered across quiet rooms, when we are explicitly told not to dwell on negative things.  When the people we love most and want to protect seem to fall apart when we talk about the dead".

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'."

Quality of #Death. My Journey with Stage 4 Breast #Cancer.

"We shouldn’t be afraid to talk about what a good quality of death is while balancing a good quality of life. I believe a good quality of life relates more to the application of medical intervention or lack of medical intervention. For me, a good quality of death relates to the amount of grace and love that surrounds me. I am hopeful, it will fuel empowerment and strength as I face my death. I want to find grace and love in myself and the people sharing this journey with me".

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.”

Let's Go Home. #PhotoGrief

"In my dreams she is still there and nothing has changed except for me.  The house is still messy, paint is chipping, doorknobs are missing, and there are dishes the sink.  My brother and sister have the TV turned up way too loud in the living room and one room my mother is flawlessly playing the piano, totally undisturbed by the commotion going on around her".

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".

#Denial is Tricky. On #Being. @SharonSalzberg

"At our core, we assume that hiding from pain will somehow keep us from feeling it. Of course, trying to shut our minds off to suffering effectively ensures that it will persist, in some form or another… 

Denial is tricky. Sometimes, we think we are not in denial because we recognize the existence of an uncomfortable feeling, but still turn away from it. Our denial voice might say, “Of course I know I am going to die, but why think about it?”

We need not dig deep into all the possible physical maladies we might experience when we die — that’s not the point of opening up to discomfort. The larger point is that each moment becomes immensely powerful when we strip away various denials. We can recognize our fear of death, of change, of letting go of our attachments, and feel the discomfort of that recognition. By being honest with ourselves about our various forms of suffering, we don’t feel more suffering — we create freedom".

#Dying is About #Living. ~ Metastatic Me

"One lives with a terminal illness by taking each day as it comes.  In the beginning, I would tell myself that I wasn't going to die that day, and that I wasn't going to die the next day or even the next week.  After time, the days started to accrue.  Slowly but surely, plans were made; goals were set.

And so I learned that dying is really about living.  

It's about taking each day for what it is, piecing together something good in it, and moving on to the next day.  It's about planning for the future, while simulatenously planning for a future without you.  It's about understanding the limitations that being sick puts on you, accepting those constraints, and doing things anyway.  It's about simplifying your day to day life to enjoy more time to do the things that bring you joy".