Wondering What Caused the #Cancer @nytimes

"I think the question reflects a human desire to revisit events that occurred over a lifetime, and speculate whether a change in course could have avoided an untoward outcome.

In truth, though, except in very rare cases, it is almost impossible to say that a specific environmental exposure triggered a given person’s cancer. The majority of cancers arise randomly, as if thumbing their nose at our collective need to find a cause.

But that doesn’t stop me from trying, during the part of the clinic visit when it’s my turn to ask the questions. And sometimes, I even convince myself that I have uncovered that nugget of truth that explains disease".

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.

The role of #Social #Workers in #Palliative, #end of life and #bereavement care. #hpm

"Social work is essential to palliative, end of life and bereavement care. Some social workers deliver specialist palliative care social work; many others encounter people who are close to or at the end of their life, or are becoming or are bereaved. Social workers have a great deal to offer". 

#Canadian Virtual #Hospice. Information and #Support on #Palliative and #End-of-Life #Care, #Loss and #Grief. @VirtualHospice

"The Canadian Virtual Hospice provides support and personalized information about palliative and end-of-life care to patients, family members, health care providers, researchers and educators."

Letting #Patients Tell Their #Stories. @DhruvKhullar

“As we acquire new and more technical skills, we begin to devalue what we had before we started: understanding, empathy, imagination. We see patients dressed in hospital gowns and non-skid socks — not jeans and baseball caps — and train our eyes to see asymmetries, rashes and blood vessels, while un-training them to see insecurities, joys and frustrations. As big data, consensus statements and treatment algorithms pervade medicine, small gestures of kindness and spontaneity — the caregiving equivalents of holding open doors and pulling out chairs — fall by the wayside.

But all care is ultimately delivered at the level of an individual. And while we might learn more about a particular patient’s preferences or tolerance for risk while explaining the pros and cons of a specific procedure or test, a more robust, more holistic understanding requires a deeper appreciation of ‘Who is this person I’m speaking with?’

In Britain, a small but growing body of research has found that allowing patients to tell their life stories has benefits for both patients and caregivers. Research — focused mostly on older patients and other residents of long-term care facilities — suggests that providing a biographical account of one’s past can help patients gain insight into their current needs and priorities, and allow doctors to develop closer relationships with patients by more clearly seeing ‘the person behind the patient’.”

#Memories of a #Caregiver - Honoring Voices: Walking Alongside The #Caregiver. #hpm

In Part 2 of our "Honored Voices" series, we listen to bereaved caregivers and support professionals and what can be learned from their experience. This video is designed for those who are currently supporting caregivers or those who have experienced the loss of a loved one.

#Dying is Inevitable. #Living is Not. "#Love is Stonger Than #Death" Rest in Awesome Esther.

"Wayne Earl reveals the power of living and loving life by sharing the wisdom of his daughter, Esther Earl, who lost her battle with cancer just before her 16th birthday. Esther's courage, positive spirit and hope for the future transformed all who knew her. She showed the world what it meant to live life before death (via her well known vlogs and blogs) and that love is the engine of life. Esther Earl shared her spark of possibility with great generosity and was the inspiration for author John Green's #1 New York Times bestseller, The Fault In our Stars.

Wayne Earl recently authored the compelling life story of his daughter, Esther Grace, who succumbed to cancer shortly before her 16th birthday. Before she died, a deepening friendship with her favorite author, John Green, greatly encouraged her. The friendship also inspired Mr. Green, most notably in his writing of the world- renowned novel, The Fault in Our Stars, which he dedicated to Esther. The Earl Family founded the non-profit organization, This Star Won't Go Out, to help ease the financial burdens of families caring for children with cancer."

Are #Families Ready For The #Death And #Dying #Conversation? #ACP #InformedChoice

"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?"

The Meaning of #Life: #Palliative #Care Makes Every Moment Count. #hpm

"For someone facing a serious, chronic illness, the answers to that question take on a sharp focus. A patient with heart disease might want enough energy to walk around the neighborhood. A cancer survivor may want to feel like herself again after rounds of chemotherapy. Others might have a goal of seeing their children get married—or perhaps to get married themselves.

Helping patients get the most out of life is the aim of palliative care—which could surprise some people who associate the specialty with hospice, or care delivered in the final days and hours. Palliative care services do indeed benefit people nearing the end of their journey, but the field has become much broader over time. Many patients with a life-threatening disease now start receiving palliative care early—sometimes soon after diagnosis..."

How to Tell Someone You’re #Terminally #Ill. #hpm

"Though everyone eventually dies, few know how to talk about the end of life. ‘‘People don’t know what to say,’’ Wanda says. ‘‘They’re afraid.’’ Be prepared for strange and stilted reactions. Some want to believe in a fix and will give you unsolicited health tips. (‘‘Don’t eat sugar.’’ ‘‘Avoid gluten.’’) You can ignore their suggestions but acknowledge the heart underlying them. People may offer to pray for you. ‘‘Prayers are good, but maybe what I need is someone to listen,’’ Wanda says. For that type of engaged listening, you may need to seek out a professional, like a trained social worker or a psychiatrist. Sometimes people who know about your condition — those you tell will tell others — will pretend your situation does not exist. Or weirder still, they will temporarily forget". 

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".

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.”

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."