Taking Palliative Care Mainstream with the help of ePatients

by | Mar 18, 2017 | Blog, Kathy Kastner, Personal Decisions

Charlie Blotner, 21-year old 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:

Taking Palliative Care Mainstream

Charlie and I were amongst 17 Patients at the Coalition for Compassionate Care of California’s Summit. The theme:  ‘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’:

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.

Patients 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 met the night before the Summit. I planted myself at the table assigned to delve into communication, a key component of palliative care. Also at my table, artist and tweeter Elizabeth Jameson, whose Multiple Sclerosis didn’t stop her from making an important point about communication. “Volume'”said she. I thought she mean to turn up the volume on her speaking device. But no. She was pointing out that in emotional topics – such as end of life – the volume of information can be overwhelming.

Several Patients put effort into making a poster.                              Elizabeth was one of them

Describing Palliative Care

Explaining Palliative Care can be tough. Often it’s seems an explanation of what it’s not. Then, I met Palliative Dr Steve Pantilat, author of Life after Diagnosis I think he nailed it. I gave him a smooch in appreciation.

“Medical care that focuses on symptom management and quality of life.”

Palliative Care Doctor

Dr Steve Pantilat

Quality of Life: More than medicine

The day started with a brief meditation. Throughout the day,  The Threshold Choir brought the gift of a musical break to anyone in need.

They don’t seem to do just one thing, these wonderful Palliative healthcare peeps.

 Jessica Zitter critical-care turned palliative care doctor. I couldn’t put down her book, Extreme Measures and her Oscar nominated short film, Extremis should be mandatory viewing.

Palliative Care Doctor

Dr Michael Fratkin

Dr Michael Fratkin’s  Resolution Care uses telehealth to extend access to palliative services.

Living with Chronic Conditions

For me, meeting fellow Patients gave an insight into living with conditions like MS and Lupus. My room-mate (also an author: Wide Awake and Dreaming ) Julie Flygare, educated me on the chronic condition she has well-managed: narcolepsy. One of her missions; to meet Keynote Speaker, Dr BJ Miller

Humour is healing

One of the keynotes was Dr Eric Cassell, whose 1991 book, The Nature of Suffering and the Goals of Medicine still resonates. Retired since 1998, he’s still on a mission, as Julie captured in a tweet:

His keynote was filled with humour. As an equal evangelist for humour and Palliative Care, I appreciated his ‘cutting to the chase’:

Here’s hoping, with the 400 strong attendees, and the impact of twitter, that the gift that is Palliative Care will become the Standard of Care, right along with ‘curative’

Palliative Care Mainstream

Thanks to Symplur Heathcare Hashtags