living your best to the end
Ricky’s mother had a ‘good death’

Ricky’s mother had a ‘good death’

Of the three siblings, Ricky – the sole daughter – was closest to her mother, Anna. “When my marriage ended, my kids and I lived with my mother. We all adored her.” In the last three years of her life Anna- who died at age 91 – was beset by Dementia. “It was more than memory loss – it was her wonderful personality that vanished.” In spite of the pain of her beloved mother disappearing, Ricky took care of her until the end. It was an end ‘strategy’ that the sibs agreed on: no heroic measures. No CPR should her heart stop, no medications to jump-start her system, no breathing machines and no feeding tubes. “The day she passed the entire family had a get together in her room. We brought take out food and ate our picnic sitting by her saying our farewells .I returned later that evening to have time with her alone. I curled up around her, and whispered, it’s ok to go. She died later.” As spokesperson, Ricky stood firm in the face of health care professionals who repeatedly tried to sway the agreed-upon ‘natural death’ route. Afterwards, she was asked to give an interview about why she and her sibs could stand their ground.“The sibs and I did not see the point of meds that would prolong a life that was obviously ending… comfort was our priority and we felt that would be what she would have chosen had she been able.”...
A beautiful death

A beautiful death

“My mother was ‘dying’ for about 10 years – with her sickness, she seemed often on the brink of death, and then she’d rally. We’d all said our goodbyes a number of times. But on the day she actually died, my father was in her bed, his arm around her, holding on to her. He’d been in this position for a long time when my former brother-in-law came to visit. “My mother and her former son-in-law had kept up a really special relationship even after my sister had divorced him. They were very close and spent a fair bit of time together. My father would call him ‘her spiritual companion’. When he came into my mother’s room, she was looking grey and frail. My father’s arm was falling asleep holding her. ‘Can you take over here?’ he asked when former brother-in-law appeared. Take over he did, cradling my mother against him. My mother looked at him and her face lit up. Her cheeks became rosy and her eyes twinkled. She looked like a teenager again. She smiled, and took her last breath. It was a beautiful death. I was glad to have been there. Interestingly, when I was about 5 years old, I had a dream that my mother died in the arms of a younger man. It was the only such dream I’d ever had.”  ...
Taking Palliative Care Mainstream with the help of ePatients

Taking Palliative Care Mainstream with the help of ePatients

“It quite honestly surprises me (the new kid on the block) that there aren’t standard services to build Palliative Care.” Charlie Blotner, 21-year old ePatient and co-founder of the tweetchat for those with brain tumours #btsm.  In learning more about Palliative Care, it just made sense that it should be part of standard services. Alas, not: If you’ve seen one #palliative care program, you’ve seen . . . one palliative care program – Jill Mendlen #cccc17 #sharedstandards — Allison Soeller, PhD (@allisonsoeller) March 14, 2017 Charlie and I were amongst 17 ePatient Scholars at the Coalition for Compassionate Care of California’s 9th Summit – the theme being ‘Taking Palliative Care Mainstream’  Dialogue and discovery were the other ‘themes’ of the Summit as patients’ perceptions of Palliative Care evolved.  Palliative as ‘the beginning of life’: “I thought palliative care = end of life, now I see it is the beginning of life.” – #ePatient after our first workshop #palliative #CCCC17 — Elizabeth Jameson (@jamesonfineart) March 13, 2017 Peter Kafka was the ePatient in question in Elizabeth Jameson’s tweet.  His  comment proved that there’s still myth-busting to do.  Peter is one of the founders of a peer-support group for men with cancer.  A feat unto itself: getting men to a cancer support group. Peter will bring his newfound Palliative knowledge back to the group. ePatients included It’s extraordinary to have patients and caregivers together in the same room with healthcare professionals whose practice and outlook embodies person-centered care.  They are open to hearing from us. But first, the pre-conference Planning Session. To work through the principles of Palliative Care, we ePatients...
Dr. Michael Fratkin is an enabler

Dr. Michael Fratkin is an enabler

“Most of my healing has little to do with medicine.” “My approach has more to do with being there, listening and helping people with a different approach.” Fratkin, entrepreneur creator of Resolution Care,  is a Palliative doctor whose conversations enable people to see things differently The 37-year old alcoholic He gives me an example: “A 37 year old guy who’d almost drunk himself to death – and not for the first time. I knew this patient because he came to us for Rehab. After 10 months of sobriety, he fell of the wagon: Shit happens.” A week ago, this 37 year old had a 75% chance of dying. Two weeks ago, his doctor wanted to change hospitals: “That’s what the family wants.” I was told. Fratkin thought it was crazy, and not medically indicated. “But I didn’t know enough about the situation, so I checked in on him. He was doing better, but was still high risk. I spoke to his mom via video. His mom loves him, and understands him as an alcoholic. Almost killed his liver with hepatitis, but she loves him.  So I asked: What do I need to know – as a parent – to better understand what’s going on, what you’re feeling. And I determined what the family really wants is for him have to have another chance, they want to know how they can help him to survive. Nobody explored that until I spoke to her. 45 min later, he and his mother were able to see things differently. There was healing in the space: if he dies today, there is healing in...

Extreme Measures: Dr Jessica Zitter on a Palliative mission

“I’m going to call 911: a doctor is torturing a patient.” So said Nurse Pat Murphy to Dr Jessica Zitter  – just as Zitter was about to plunge a syringe into the neck of a patient with a host of health issues. Tho the 911 call wasn’t made, it was a turning point for Zitter – who trained as a critical care doctor, and for whom going gently into that good night felt like she was abandoning a patient, a failure. That encounter with Nurse Murphy led her to completely change her own medical ‘mandate’ – becoming a Palliative doctor – the specialty that embodies the philosophy of ‘patient-centered’ medicine. I first ‘met’ Dr Zitter in a New York Times essay in which she admits on her first night on call as a Palliative doctor she hadn’t yet completely relinquished her ‘critical care save the life at all costs’ ‘tude. A healthcare team in conflict The patient ­– a Holocaust survivor ­– was sleeping peacefully. She’d been admitted with pneumonia, but it hadn’t responded to treatment. As she got sicker and her breathing harder, she was made comfortable. The doctor attending the patient told the team gathered that she had clearly said she didn’t want a breathing tube, but the respiratory therapist wasn’t comfortable not intubating: “I’m not really sure she ‘got it’ she was pretty out of it.” Zitter was also unsure. The compromise was to strap on an oxygen mask overnight and re-assess in the morning. The morning found the patient ‘delirious and terrified, her mask off center and totally ineffective.” Confirmation of commitment to Palliative Care...