BestEndings Flash Video Chat: Talking about dying

Impromptu End of Life conversation captured on video It started out as an experiment: there was a new video camera, an excuse to get together with a good friend who ‘does the lighting’ for movies and commercials. He makes everything look beautiful. And why not get in pizza and invite some friends, and get a proper lighting lesson and camera test.

Pizza topping had to take into account various cultures: Hindu, Muslim, Mexican-Catholic, Irish-Catholic, Anglican.

Chowing down, the ‘what’re you up to’s’ led to my continued interest in all things related to end of life. Sparked quite a convo!

And so a purpose was found and a flash video chat created. The result was too good not to post.

As always, I am indebted to the tweeps and communities dedicated to a dignified end of life, as free of suffering as possible: world-wide #hpm, #DWDchat, #EOLchat – information at the insanely helpful Symplur Healthcare Hashtags.

With props to my much esteemed fellow discussers:The Conversation Project, Death Cafes, Death over Dinner The question I posed: “Why is it so hard to talk about dying.”

Starring: Mike Houlahan, Sudhir and Ruth Handa, Colleen Young, Georgina Camacho Ibarra and Majid Ariannejad

It’s 12 minutes long, broken into 5 parts. Watch each separately, [...] continue the story

Kathy Kastner

Kathy Kastner Much like an actor, I am driven by language and interpretation.  However, I do not aspire to be in theatre, on tv or film. Instead, my passion and commitment to language is focussed entirely in the world of health.

As a non-healthcare professional, I am regularly aghast at the assumption – nay, expectation  – that we who are untrained and illl-equipped to understand medical jargon are supposed to know, interpret and act on the language of those trained in the field of healthcare.

I use every medium I can to ‘out’ my outrage, and to educate.

With The Health Television System Inc, I pioneered a hospital-based television network dedicated to reassuring patients and their families that they aren’t stupid just because they interpret ‘stool’ as a 3-legged seat; that ‘treat’ has nothing to do with dogs or children.  Patients are encouraged to ask questions. But there’s another assumption: patients know what questions to ask. I develop lists of questions.

My mission has been electrified by the digital world: I blog on two websites Ability4Life.com – for adult children caring for aging parents; BestEndings.com  about end of life choices, and all those scary and in comprehensible words: co-morbidiities, wound-care, vent, traech.

I ‘YouTube’ about confusing [...] continue the story

Annie’s story.

At 21 weeks gestation, we were informed that our daughter, Annie, had a genetic condition associated with profound disabilities. Thus began the most difficult but, ultimately, most enriching journey of our lives.

We realized it was highly likely that Annie would require life-saving interventions in her infancy. From the outset, we wrestled with an agonizing, moral question: Would these interventions and the preservation of her life be in the best interests of our daughter and our family?

To make an informed decision, we began to research. We discovered children who were certainly very impaired, and we were afraid. However, as our knowledge increased, and we met more families with children deemed to be ‘severely disabled’, our fears were alleviated.

Shortly after Annie’s diagnosis, I attended the funeral of a young man with severe cerebral palsy, who had never walked or talked. The midweek service was filled beyond capacity. After the service, I spoke to his teacher. Tears fell freely from her face as she told me that her student had ‘changed her life’. How could that be?

Children with Annie’s condition seldom live into their teens, yet we have observed that when their child dies, the families are absolutely [...] continue the story

To live at all costs

October 2nd, 2012

My mom died almost three decades ago. She’d made it super clear to my sibs and I that her wish was to live at all costs. The thing is, none of us realized what those (human) ‘costs’ would be. And we’d never thought to explore what ‘quality’ meant to her life. A bit about my mom: She was a constant learner. Nothing made her happier than being immersed in a new subject. After my father died suddenly of a heart attack, she became associate producer for my documentary-producer brother. Their topics ranged from women with breast cancer (my mom was a survivor) to rapists and murderers. By the light of her eyes, and her proud demonstration of new jargon, you could practically see my mother’ s brain expanding. At age 65, mysterious ailments began to plague her body (she’d often lament: it ‘s such a shame that my body is deteriorating while my brain is becoming more honed)

The ailments were eventually linked to the real problem: a brain tumor. Suddenly, an inability to say the right words to make herself understood was put into a new and horrific light. Options were surgery and – if unsuccessful – radiation. [...] continue the story

Tony Nicklinson (Locked-in Syndrome) BBC News Part 2

In 2005 Tony Nicklinson had a catastrophic stroke, which has left him utterly paralysed. He has what is known as ‘locked in syndrome’ and cannot move, talk, feed himself or perform even the most basic function without help. He can only communicate via a computer controlled by his eyes.

In this two part series Tony speak with BBC News about wanting to end his life.

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