living your best to the end
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...

Coalition for Compassionate Care Summit with ePatients

  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 Great keynote by #ePatientdave with @KathyKastner in foreground at #cccc16! pic.twitter.com/XEOcpm39ir — Elizabeth Bailey (@PatientPOV) May 12, 2016 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,...

Advance Care Planning: Women’s College Hospital and Kathy Kastner

National Advance Care Planning Day sees Women’s College Hospital as leaders: bringing the first consumer-created End-of-Life website to Family Doctors. TORONTO APRIL 16…Women’s College Hospital  (WCH) is the first to embark on a project with Family Doctors and patients to evaluate the only consumer-created website for end of life education, BestEndings.com, developed by Kathy Kastner. With the trend to involve patients in all aspects of health care – from research to policy – selected WCH Family Doctors will ask their patients to help evaluate BestEndings, via paper or electronic survey. Feedback and input will be used to improve the overall user experience. Dr Chen championed BestEndings.com in ‘Dragon’s Den’ type pitch session. Dr Chen, Assistant Professor, Department of Family and Community Medicine, University of Toronto, is winner of the 6th annual Excellence in Education awards recognize WCH staff who demonstrate a commitment to education, create an environment that enhances understanding and teamwork and who have a broader impact on WCH’s and women’s education and interprofessional activities. “Women’s College Hospital is leading the way by hosting a project like this. Working together is the first step to creating a mutual understanding of improving patient-doctor end of life conversations and being able to care for and treat patients in the best way possible. “ Says Dr Chen. “Kathy has a history of creating award-winning patient-centered education: she brings a ‘layperson’s perspective to end of life issues, along with curating evidence-based resources and an electronic Advance Directives form.” About Kathy Kastner: With a background in journalism and entrepreneurship, Kathy pioneered North America’s first hospital-based patient-education television networks, implemented for 20 years in top teaching hospitals...

Health 2.0 Interview with Dr Pat Salber @docweighsin

Silicon Valley : Health 2.0 October 1, 2013 ..Presentation after presentation of apps and technology-based devices designed to help manage health. I aim to be there next year with BestEndings Mobile App.  Even with out a tech solution to dazzle, I was interviewed by Dr Pat Salber producer of The Doctor Weighs In with this lovely intro by Gregg Masters @2healthguru: Kathy Kastner sporting her ‘death kills’ T-shirt is a humble, though inquisitive force of nature who describes herself as follows: I’m just a regular gal who found myself pondering what I did and didn’t know about: my own anxieties about dying (not about death, mind you, but about my life until The End) what happens when I’m (in the process of) dying my knowledge of ‘options’ while I’m still alive my understanding of those options and their risks I figure I’m not alone, and that: I’m learning about aging as I’m in the process, but I don’t want to be learning about dying as I’m in the process my learning process may help others I can learn so much from...