Guest post by SPM member Liz Salmi of CCCC, an organizational member and supporter of our Society for Participatory Medicine. Note also (at bottom) that this event provides a model for other organizations to follow: patient participation is enabled by a foundation grant.
In our society, talking about serious illness and death and dying is often difficult. Having these discussions is not a common experience for most of us for numerous and complex reasons. It’s hard to talk about death and dying when it is generally a culturally taboo topic.
Knowing that there are options towards the end of life, such as palliative care and hospice, may help make these conversations easier.
For the first time, the Coalition for Compassionate Care of California [an organizational member of our Society] is excited to welcome e-patients to participate as equal partners in our 8th Annual Palliative Care Summit on May 12-13, 2016, in Newport Beach, CA. The Summit will be keynoted by e-Patient Dave.
The Coalition for Compassionate Care of California understands patients offer valuable insights and experience and can serve as messengers and champions of the importance of advance care planning and palliative care.
e-Patients could be the missing link in communication on this topics, and could prove instrumental in helping change the way we talk about death and dying, not only among other e-patients but among the population in general.
2016 Class of Palliative Care e-Patients
Elizabeth Bailey, MA, is a patient advocate and the author of The Patient’s Checklist: 10 Simple Checklists to Keep You Safe, Sane and Organized, which was endorsed by Dr. Atul Gawande and called “a godsend” by The New York Times. She is currently working on two projects: a documentary film exploring ways to demystify palliative care for the layperson and a book geared towards helping the sandwich generation of caregivers negotiate long-term, complex caregiving for parents and other family members and friends. Follow Elizabeth on Twitter at @PatientPOV.
Cindy Chmielewski is a retired educator and myeloma survivor is using her passion for education to teach a new group of “students” – myeloma patients and their caregivers. Cynthia is on the advisory board of the Patient Empowerment Network and the Myeloma Crowd. She tweets @MyelomaTeacher and co-founded the #MMSM TweetChats. She administers the PMMNG and the MyelomaTeacher’s Resources Facebook pages. Cynthia is a panelist on CureTalks Myeloma Internet Radio and is on the University of Pennsylvania’s IRB. Follow Cindy on Twitter at @MyelomaTeacher.
MarlaJan DeFusco is the creator and author of the Luck Fupus blog. She lives with lupus, congenital heart disease, several overlapping autoimmune diseases, is a cervical cancer survivor and breast cancer “previvor.” Her blog began as means to cope with living with chronic illnesses, and has become a platform for her to educate and advocate for patients across the globe. Follow MarlaJan on Twitter at @marlajan.
Kathy Kastner‘s e-Patient journey was launched in a tweet-chat about hospice and palliative medicine (#hpm): health care professionals dedicated to a peaceful, dignified death lamented how little laypeople understood about life-prolonging interventions. As one such layperson – with a history of identifying gaps in patient education – Kathy’s blogging, researching and curating resulted in BestEndings.com – a consumer website dedicated to helping people navigate their medical decisions as life’s end nears. Follow Kathy on Twitter at @KathyKastner.
Debra Zeldin, mom of three, has been a San Diego county foster parent since 1998. She is an advocate for the children in her care, and has seen first-hand the positive impact palliative care has made in the life of her now 11-year-old daughter, Anna. Debra has joined with the Children’s Hospice & Palliative Care Coalition to advocate for policy issues impacting children with serious illness in California.
The Coalition for Compassionate Care of California is an interdisciplinary collaborative of thought-leaders from healthcare systems and organizations, government agencies, consumer organizations, and the general public. Our goal is to transform healthcare so that medical care is aligned with individual patient preferences—that people get the care they need and no less, and the care they want and no more. We want to create a community where people have support to explore their wishes for care during a serious illness, express their wishes, and have these wishes honored.
Patient participation in the Coalition for Compassionate Care of California Annual Summit is possible through a scholarship program funded by the John and Wauna Harman Foundation. Coalition for Compassionate Care of California commits to creating a welcoming and comfortable environment in which e-Patients will receive the same level of respect and inclusion given to clinicians, researchers, policy makers and other Summit attendees.