Just Days Before Her #Father #Died, She Told Him What He Meant To Her. @NPR @StoryCorps

When he returned from the hospital to find hospice nurses awaiting him at his home, Eva says, he turned to her and said, "I think they think I'm gonna die."

And while he continued to get weaker as he approached the end of his life, Eva says she and her father had not spoken in depth about the prospect of his dying — until the conversation she recorded for StoryCorps.

"Do you think you're dying?" she asked him.

"Everybody dies," he replied.

"Are you afraid?"

"No."

"I wish it wasn't happening right now," she told him. "What are you most proud of, Daddy?"

"My kids."

"Your kids?"

"My family."

She did the interview with her father on a Tuesday afternoon. He died on Thursday night, that same week — on Jan. 29.

WHAT’S MY #STAGE AGAIN: SHARING IS #CARING. @robinmbrowne

"It can be hard to feel like anyone understands what you’re going through, and can be discouraging when message boards and support groups don’t give you the emotional reinforcement you need. It’s easy to feel overwhelmed and alone with your thoughts if you don’t feel comfortable sharing your situation with those around you. Not everyone wants to post about their experiences on Facebook, or live-tweet each scan. If you tend towards the private side, there are still some resources I’ve found that can help with feeling less alone with your struggle...

One of the great loves of my life, Fred Rogers (also known as Mister Rogers), once said, “Anything that’s human is mentionable, and anything that is mentionable can be more manageable. When we can talk about our feelings, they become less overwhelming, less upsetting, and less scary. The people we trust with that important talk can help us know that we are not alone.” There’s no easy way to start the process of emotional healing, but sharing your experience with others can be a strong foothold for that journey."

‘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".

5 Things #Grief Taught Me

"Six years inside complicated grief taught me many things. Five of them I can put into words and onto paper. I have a feeling I will be learning from her the rest of my life..."

7 Fun Ways To Teach Your #Kids #Mindfulness

"If you ever want to be inspired and also have a giggle, ask a group of kids what they think “mindfulness” is. “Relaxing out of our daily troubles and stress,” “A way to stay yourself when you’re going through something troubling” and “It’s like getting off of one railroad track and getting onto another one” were some of my favorite answers from the recent class meeting. Kids can really be fountains of spiritual wisdom!

When I told them the dictionary’s definition (“a mental state achieved by focusing one's awareness on the present moment, while calmly acknowledging and accepting one's feelings, thoughts, and bodily sensations, used as a therapeutic technique"), the kids weren’t entirely sure what I was talking about. And so we did some exercises to test it out. Feel free to try these at home!"

#Childhood #Bereavement #Care Pyramid

"In the absence of a national approach to childhood bereavement care in Ireland, the pyramid is a guide  for professionals and concerned adults in identifying and responding to the needs of children and young people who have experienced a loss.

An expert group working in the area of childhood bereavement was convened to review the adult and child bereavement literature and pertinent policies (international and local), in order to establish existing models of bereavement care and core dimensions of best practice.  From this review and building on practice experience, a framework was created and piloted with medical, social work and educational professionals and parents".

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".

National #Family #Caregiver Day.

"On the first Tuesday of April, Canadians come together to recognize family members, friends, neighbours and other significant people who take on a caring role to support someone with a diminishing physical ability, a debilitating cognitive condition or a chronic life-limiting illness.  Known as National Family Caregiver Day or National Carer Day, this special day encourages all Canadians to pay tribute and recognize the valuable contribution of family caregivers to our lives and our society as a whole."#Family

Compassionate Care Benefits. #Caregiver #Support #hpm

"Compassionate care benefits provide temporary income support to eligible individuals who must be away from work to provide care for a gravely ill family member at risk of death.

Effective January 3, 2016, the enhanced benefit, announced in 2015, allows claimants to collect up to 26 weeks of benefits, up from the current 6 weeks. Further, the period during which benefits can be taken is expanded to 52 weeks (up from 26 weeks). Benefits can be shared between family members.

Eligibility for compassionate care benefits remains the same, including the requirement for a medical certificate signed by a doctor attesting to the family member’s condition".

#Health Sentinel: Lack of #knowledge about #palliative care limiting its benefits to #patients, #hospitals. #hpm

"When Gerald’s physicians discussed options and next steps, palliative care was among them. Rozanne, a retired teacher, was familiar with hospice but unaware of palliative care as a specialized service.

'I didn’t have a clue,' she said, but added that through those services, 'our every need was met.'

Multiple studies show that, compared to awareness of hospice, “There’s significantly less familiarity with palliative care,” said Dr. Lyle Fettig, director of Indiana University School of Medicine’s Hospice and Palliative Medicine Fellowship program centered in Indianapolis…

Palliative care, according to the New York-based Center to Advance Palliative Care, is appropriate for any age individual and at any stage of a serious illness, whether that illness is cancer or a chronic condition, such as heart or lung disease. The goal is to improve quality of life for both patient and family through a holistic, interdisciplinary team approach”.

#Death and the #Workplace. @GroundSwellAus

"We know that most of us don’t grieve in stages. In fact, we experience resilience. To use George Bonnano’s research, for most of us grief is an up and down experience with capacity for both intense positive and negative emotion. This is normal and expected. And perhaps most importantly, we know that being part of a network of colleagues (as well as friends and family) who take part in the caring process, has a transformative effect. Not just for those of us who are experiencing great loss, but also for the people who work with and care for us."

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

Patients staff and students talk about their experience of palliative care in this film that takes away some of the stigma attached to death and dying enabling important conversations to happen at the end of life. The observations contained demonstrate the quality of life that can be attained at the end of a person's life.

"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.

What Luck Means Now

"The day we learned the news, just 15 months had passed since our wedding on a New Hampshire hillside with friends and children gathered, fireworks exploding and a band backing us up as we performed a duet on a John Prine song and talked about the trips we would take, the olive trees we would plant. Each of us had been divorced almost 25 years. How lucky, everyone said, that we had found each other when we did.

Now, luck means having this operation. In four hours, luck will mean getting a call from a nurse who says: 'They’ve reached the tumor. They’re going in for it'."

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".

Repeat After Me: 'Hospice Means More Care, Not Less.'

"If you or anyone you know has advanced illness that isn't meaningfully getting better (or keeps getting worse) in spite of many treatments and hospital stays and doctors' visits then you owe it to yourself to learn more about hospice sooner rather than later. This is especially true for more frail elders with serious illness because the hazards of additional hospitalizations and certain treatment side effects are more serious and more common. Ideally, hospice care is set up on a better day, in advance of a true crisis so that the hospice team and person receiving services can get to know one another and set up truly personalized care. Too many people elect hospice so late in their course of illness that they miss out on many of the benefits".