Screen Shot 2016-05-16 at 6.14.46 AM

ePatients: Engaged and Empowered and Invited

The Coalition for Compassionate Care of California (CCCC) promotes high-quality, compassionate care for everyone who is seriously ill or nearing the end of life.

What a human-centered, patient-centered goal. And now, the Coalition includes the patient’s point of view –  their  first Summit with ePatients : we who are not afraid to look beyond, ask beyond and search beyond what we’ve heard in doctor’s offices. It’s a given that the ‘e’ includes electronic (email, forums, searches) connectivity after all, in between doctor’s visits patients live their lives, and turn to the digital world for support comfort and information.

Palliative approach: ripe for ‘ePatient engagement’

Since Palliative care focuses on all aspects of comfort (or as palliative doc, Daphna Grossman put it: doing ‘Nothing’ is not an option) patients and families have ample time to learn about what may be ahead, and put put mind to what’s important long before the end may seem nigh.  Comfort itself can mean many things, in addition to the all-important pain management.  The palliative approach: perfect opportunity for ‘engagement’.

ePatient: Educate and Encourage and Evangelize about Palliative Care

This is one of the many reasons I was so over-the-moon at the decision to invite patients to the Summit, and was even more so when I was selected. This, especially so because my fellow ePatients are living with chronic conditions – whether themselves or those they care for – where I am not. Rather I am immersed in the crises, the nuances and the decisions as life winds down. I consider myself an ePatient Educator and Encourage-r and for sure another ‘e’: Palliative Care Evangelist

Even for the most involved ePatients, such as Keynote-er kidney cancer survivor and dedicated ePatient Dave deBronkart (@ePatientDave) end of life often starts and stops with to prolong or not to prolong, whilst not being fully informed on what that might entail. We had a conversation about end-of-life issues when Dave and I dined together after a Patients2.0 presentation I was part of.

Dave said: “I’ve told my wife, if I lose my mind just let me go.”

Said I to Dave: ‘there is much more to think about, make and direct decisions about than ‘just let me go’. Who knows but it may be that your wife wants a say in the matter.’

End of life health decisions are rarely made in isolation

CCCC  CEO, Judy Thomas made the point that health decisions aren’t made in isolation.

As beautifully and heartbreakingly told in her Keynote, Katy Butler,  journalist and author of Knocking on Heaven’s Door, end of life medical decisions are often influenced by forces that don’t represent the most beneficial patient choices such as when doctors insist on procedures that solve a problem that the patient doesn’t want solved.

In addition to the ab fab keynotes, there were excellent breakout sessions. CCCC Medical Director of Consulting Services, Dr Lael Duncan shared insights, encouragement and suggestions to fellow professionals on the topic of ‘difficult conversations with seriously sick patients.’

As always, my hottest button is in the communication gaps and de-humanizing language, so was pleased to hear there’s increasing sensitivity:

From conversations about the emotional impact of having conversations with patients about life’s end, I see the stresses of the system working against healthcare professionals ability to see things from our point of view, So, when I stood, with some trepidation, and was warmly greeted:

Later, I saw the tweet about making language of healthcare professionals more patient-friendly: re-wording ‘advancing illness’. and ‘goals of care’ and Not so hard to do, I thought:

This post is dedicate to my mother: an early ePatient long before the internet changed the world. She researched at the library and sent old fashioned letters in the hope of recognition when doctors refused to believe she had Hemophilia (rare in women). It’s my mother dancing in red that’s on my treasured WalkingGalleryJacket, painted by fellow ePatient Regina Holliday.