living your best to the end

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,...