Most people have a lot to learn about navigating end of life issues. My dear friend/colleague/mentor Joan Blumenfeld, 85, is learning firsthand through her own end of life experience, and she is serving as a guide for anyone who hears her story.
Joan says, “I mention stage IV lung cancer whenever it is appropriate. I always feel I’m bringing some light to a big taboo that is good for others to talk about and see me talk about it without falling apart!!!”
More to the point, Joan is dying. We will all die someday, but Joan is aware that her days on earth are limited. She was diagnosed with stage IV lung cancer in August 2016.
Joan is also living.
In addition to coping with her illness, engaging community-based palliative care physicians to support her and advocate on her behalf, and guiding her three adult children along with myriad colleagues and friends, Joan has:
- Presented to medical residents at Norwalk Hospital on her 85th birthday just two months after she nearly died there
- Joined the palliative care department at Norwalk Hospital as a volunteer
- Presented about end of life conversations and planning to college students in a course at Quinnipiac University called Social Issues in Family Caregiving
- Taped a radio show
- Written a dozen blog posts
- Presented the patient perspective as a panelist at an end of life conference
- Attended other educational conferences and met with palliative care experts to learn about the specialty
Joan has already made a significant impact. Many others will be able to benefit from Joan’s teachings via Living With Palliative Care, a multimedia project Joan launched in collaboration with gerontologist Donna Fedus and executive producer Lauren Lewis, both of Borrow My Glasses, LLC, and palliative care practitioner Sue Sweitzer. Joan’s adult children, her internist Dr. Howard Eison, her palliative care specialist Dr. Randi Diamond, head of palliative care at Norwalk Hospital Dr. Heather Sung, and chaplain Kaye May have also been interviewed for the project.
Living With Palliative Care, which Joan says will be her public legacy, is planned as a documentary with accompanying educational materials for four distinct audiences: 1) patients and families facing hard diagnoses, 2) health care professionals, 3) students, and 4) the general public who could benefit from learning about palliative care in a proactive, informational, start-the-conversation way prior to a hard diagnosis or crisis.
As Joan learned more, she realized how many misconceptions surround palliative care and the tremendous benefits patients and families can experience. Joan thought that after more than 20 years as a geriatric care manager, she should have had a clearer understanding about what palliative care is and how to access it. This led to Joan’s interest in sharing what she is learning about living with palliative care at the end of life.
Living With Palliative Care will be a tool that patients, families, health care practitioners, and the general public can use to better understand palliative care, and work through end of life issues, decisions, and conversations.
At this point, videotaping is nearly complete. We now need financial contributions from individuals and/or organizations to bring the project to life! Funding will cover the cost of editing and development of the educational materials. Distribution partners are also sought.
Contact Lauren Lewis via email at firstname.lastname@example.org or (917) 584-7707 to learn more about sponsorship opportunities.
Visit www.borrowmyglasses.com to learn more about Living With Palliative Care, click the link to the ComForCare radio show featuring Joan and Donna Fedus, and see photos from some of the production shoots along with quotes from several of the Quinnipiac University students who attended Joan’s guest lecture.
To subscribe to Pearls of Wisdom, Joan’s blog about observations on end-of-life decisions, family dynamics and spirituality, visit: http://www.joanblumenfeld.com.