"The Institute of Medicine (IOM) believes the time is right for a national dialogue to normalize the emotions on death and dying. They think that the social trends point toward a growing willingness to share stories about the end-of-life care and that it will help drive more family discussions. In the IOM consensus report, Dying in America, experts found that accessibility of medical and social services could improve a patient’s life at the end. But if people don’t discuss which medical care or social services they want or not, how will their wishes be known and carried out?"
#Dying, With Nothing to Say. #hpm
"Months later, I began writing a book about writers’ final days. Talking to my subjects’ families and friends, I realized that while nearly everyone has a fantasy of a “last conversation” with someone they love, very few people actually have it. It is the fantasy of resolving all conflicts, of emotional catharsis, that rarely ever comes to pass, because the habits of reticence or resentment that were there the whole time are still there, because the proximity of death does not transform personalities, or compel us to cut through to the heart of things, however much we want it to…
Part of the problem is that some silences are too wide to narrate. Words, even if the right ones miraculously presented themselves, would not be enough. The confession and forgiveness we want to fill the room do not spring up more naturally in extremis, under duress. It may be the last chance for the dying person to clarify, but clarity doesn’t necessarily come. In this way, death is a lot like life".
‘Everything We Say and Do’: Soliciting #Goals from Our #Patients and Their #Families
“Everything We Say and Do” is an informational series developed by SHM’s Patient Experience Committee to provide readers with thoughtful and actionable communication tactics that have great potential to positively impact patients’ experience of care. Each article will focus on how the contributor applies one or more of the 'key communication' tactics in practice to maintain provider accountability for “Everything we say and do that affects our patients’ thoughts, feelings and well-being.”
#Dying Better, Even If It Means Sooner. Delaying #death with excessive, expensive end-of-life care often does more harm than good.
"Looking back, many sons and daughters I have worked with regret having encouraged a parent to undergo a hip surgery. Spouses regret pushing for their loved ones to be intubated, and many patients struggle to balance the suffering with the life-prolonging effects of their treatments. Such regrets are the outgrowth of an approach to death that is focused on delaying death rather than being present and accompanying loved ones as they are dying. Accessing death-delaying treatments often comes at the expense of easing discomfort and being intentional about the nonmedical ways we can help our dying loved ones".
Why #Death Is Good Dinner #Conversation. #ACP @deathoverdinner @convoproject
"As I write this, I’m five years post-diagnosis and officially in “survivorship” care – I now go in for follow-up only once a year. And I have to admit, with cancer further and further in the rearview mirror, it’s easy to get back into denial mode when it comes to death – “I’m going to live forever!”
But we need to acknowledge death, talk about it, whether we’re a terminal patient, a just-diagnosed Stage I patient, or someone entering “survivorship.”
Recently, there have been the beginnings of a movement to help us all get real and have “the talk” about death.
So let’s get talking. Even if it’s scary and awkward, having this talk will greatly increase the chances that your end-of-life wishes are honored.
Death Over Dinner and The Conversation Project are organizing a week-long National Dinner Party to Dine and Discuss Death April 16 through 22".
On #Parenting: There is no 'normal' when it comes to #kids and #grief. And that’s okay
"We stopped talking. I rocked back and forth on her bed, holding her close, reverting to the keening motion every human leans into when things get that bad. It was the same way I held my husband in August and again in September, and the same way he reached for me in November, the wordless soothing rhythm of a parent and child.
Our guests would be okay downstairs. We sat together in the dark. And I let her cry, and cry, and cry. Broken open, edges jagged, ready to grieve".
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".
When Cancer Treatment Offers Hope More Than Cure
"I turned back to my patient, still holding her hand. 'How about we take a little break from the treatment?'
She nodded, and we sat in silence again. After a while, she asked 'When we gonna get started on chemo again?'
I looked uncertainly at her and then at Mr. Boo. He looked back at me, awaiting my reply. This time, I rearranged myself to sit up a little straighter in my chair.
'Well, I have to wonder if giving you more chemotherapy is the right thing to do, with all that you’ve been through. I’m wondering if we should be talking about bringing more care into your home, to assist both you and Mr. Boo. Maybe even hospice.'
I had said the word."
Death, the Prosperity Gospel and Me
"It is the reason a neighbor knocked on our door to tell my husband that everything happens for a reason.
'I’d love to hear it,' my husband said.
'Pardon?' she said, startled.
'I’d love to hear the reason my wife is dying,' he said, in that sweet and sour way he has.
My neighbor wasn’t trying to sell him a spiritual guarantee. But there was a reason she wanted to fill that silence around why some people die young and others grow old and fussy about their lawns. She wanted some kind of order behind this chaos. Because the opposite of #blessed is leaving a husband and a toddler behind, and people can’t quite let themselves say it: 'Wow. That’s awful.' There has to be a reason, because without one we are left as helpless and possibly as unlucky as everyone else".
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.”
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."
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".
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".
The Geography Of #Sorrow. Francis Weller On #Navigating Our #Losses
"In his book Weller invites us to view grief as a visitor to be welcomed, not shunned. He reminds us that, in addition to feeling pain over the loss of loved ones, we harbor sorrows stemming from the state of the world, the cultural maladies we inherit, and the misunderstood parts of ourselves. He says grief comes in many forms, and when it is not expressed, it tends to harden the once-vibrant parts of us".
Helping #Children #Cope with #ALS
"When a family member has been diagnosed with Amyotrophic Lateral Sclerosis (ALS) children have many questions and concerns about the person they know and love. We offer these guidelines as a tool to assist your family when talking or sharing information and personal feelings about ALS. You may also want to share this information with other important adults involved in your children’s lives such as teachers and coaches".
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”.