Monday, July 31, 2017

Should We Stop Telling People to "Fight" Cancer? The Problem with Warrior Language


When Senator John McCain revealed that he has brain cancer, well-wishers including President Obama and Vice President Pence, with the best of intentions, tweeted encouraging thoughts about McCain's strength and fighting spirit.  Steven Petrow writes in the Washington Post that this inadvertently makes the patient feel responsible for the disease and the outcome.
Warrior or people-pleaser, these character-driven approaches suggest that you are responsible for your outcome. Both are just wrong. 
“There’s been pushback against the idea that this warrior mentality is necessary for a successful outcome,” Rohan Ramakrishna, a neurosurgeon at Weill Cornell Medicine in New York who specializes in brain tumors, told me in a phone interview. 
Putting it bluntly, Ramakrishna said, “Your response to treatment is a biological one, not a psychological one.”
... 
People use warrior metaphors with good intentions, Ramakrishna explained, but the unfortunate flip side is the implication that it’s your own fault if the cancer comes back, or if you die. Those who triumph over more-curable diseases, such as cancers that have effective treatments, aren’t tougher than those facing glioblastoma — it’s just that the odds are more in their favor.

Sunday, July 16, 2017

Hospice chaplain tries to give patients purpose and peace | The Wichita Eagle

"We deserve to die in peace, Father Tom Welk says. He’s the chaplain at Harry Hynes Memorial Hospice in Wichita. You could say he counsels the dying. He says he counsels the living. We should talk about death more, he says. We should help each other die in peace....So hospice care is not only about giving comfort. It’s about giving purpose."

Hospice chaplain tries to give patients purpose and peace | The Wichita Eagle

The Death Goes Digital Podcast — Death Goes Digital

Listen to the Death Goes Digital podcast, with episodes about "digital legacies"and online obituaries.

The Death Goes Digital Podcast — Death Goes Digital:

Teens learning life lessons in palliative care | CTV Montreal News

A Canadian program for teens who want to go into medicine has them working in palliative care:
"It's not because people are at the end of life that they don't want to talk about everyday things. Everyone is still mad at the Habs or whatever. They're still people, they still know what's going on," she said. Among those lively patients is Flo. The 92-year-old spent Thursday chatting with the students about her life, raising her family, and her job working at the Lachute Watchman newspaper. "They've got a lot to learn but we can also learn from them. It can work both ways," said Flo. Amy Schecter said after just four days, she is learning quite a bit from the patients at the centre, especially "to really enjoy life. As cliché as it may sound life is super important. Live it, have fun with it, and do your best."


Teens learning life lessons in palliative care | CTV Montreal News

Widower's Grief: Cantus: the Silence of Grief

"There is a great deal of silence in our lives now. Silence at home when we are cooking. Silence in the places they used to sit. Silence where we are used to hearing their voices talking about the inconsequentials of the day. We hear echoes of their laughter in the silence. In Cantus, and in grief, we are waiting in the silence for something to happen. And we are not waiting, because something is happening. We are listening. In the space between what we’ve known and what is not yet here, we are listening for the unknown. We are listening to the silence of grief, and the tension is exquisite, like salt and lime on the lips before the tequila."

Widower's Grief: Cantus: the Silence of Grief

When a Child Dies

Saturday, July 15, 2017

Why I locked my father away - Salon.com

I felt like a new parent of a very large adult toddler; I had to watch him constantly. I wanted nothing more than to keep him with me but I was rapidly realizing that I couldn’t handle him. I’d go shopping and come home to a house full of gas — Dad had tried to cook but was used to an electric stove. The week before he walked my dog, as he had for years, and turned an around the block spin into a multi-hour silver alert ordeal. Fire and police finally found them both dehydrated four miles away....Of the top 10 diseases afflicting Americans today, nine are declining. Only one is spiking: dementia. Dementia alone will break the backs of Medicare and Medicaid — it’s projected to account for more than 70 percent of all costs by 2028. Homes don’t have to be like the sadder places I visited, residents acting like drooling zombies parked in front of televisions. As the need for care spikes, America needs to find non-pharmacological ways to improve the lives of those living with Alzheimer’s and dementia, and the jobs of those caring for them. Currently, more than 95 percent of research goes into drugs. No attention is being paid to care.

MemoryWell uses the power of storytelling and media to improve dementia and Alzheimer's care. Now we want to bring that to everyone.

Why I locked my father away - Salon.com