End of life is not a subject that most of us want to think about until we absolutely must face it head on. It is an area, that even as an entrepreneur in gerontechnology, I avoided until recently.
Last year, my grandfathers, Papas (maternal) and Gramps (paternal), were in transition periods in health. Papas was diagnosed with Lymphoma and Gramps’ dementia was beginning to become more apparent. I realized that I did not have the answers I should have to help my own family navigate the options and decided to explore innovations in end of life care.
Not only do we have a long way to go in improving quality of life to the end of life, we also waste a great deal of resources by not educating and involving families early enough. Annually, we waste $210 billion on unwanted, unnecessary and non-beneficial healthcare services. This is not sustainable. Rising healthcare costs are one of the largest financial threats to the national budget and survival of Medicare. Advanced Care Planning (ACP) has the potential to help our health care system move towards sustainability and prevent unnecessary suffering. ACP enables individuals to have choice and control over their experience, bringing peace of mind to families, and also saving great deal of resources.
Quality of Life
Fall of 2015, I embarked on a five week gerontechnology tour (mostly East of the Mississippi) and covered over 20 states by car, plane, and train. While chasing Autumn’s changing landscape, I met with entrepreneurs, researchers, investors, patients, payers, and providers. We all had the same overarching goals: to improve the quality of life of older adults and reduce systemic costs. On the journey, I had the opportunity to observe and learn about the work of individuals I might not have otherwise and expanded my appreciation of end of life. My personal goal for the trip was to address my own mortality and fear of death so that I could better support my grandfathers’ wishes as their health conditions became more acute. I found that I barely scratched the surface.
I christened the trip with the audio version of Atul Gawande’s Being Mortal – read if you haven’t – and quickly found that end of life would also be a professional theme for the trip. Throughout the journey, I met with leaders in geriatric medicine, hospice, and palliative care. I had the opportunity to learn from a visionary palliative care startup, observed an adult continued education course about dying with dignity, and toured a hospice center that felt like a home. The
theme of quality of life to the end of life was consistent with these thought leaders and brought a granddaughter hope when she was searching for solutions.
One of my first stops was horse country where I attended the Louisville Innovation Summit, which explores and showcases aging care innovations. At the summit, Aneesh Chopra (former US CTO and Author of Innovative State) and Dr. Jordan Shlain (primary care MD and founder of Healthloop) held a lighthearted and futuristic discussion about the future of geriatrics and technology. After running through a few smart home scenarios, the duo dove into end of life.
A Deep-dive Into Specialty Pharma
A specialty drug is a class of prescription medications used to treat complex, chronic or rare medical conditions. Although this classification was originally intended to define the treatment of rare, also termed “orphan” diseases, affecting fewer than 200,000 people in the US, more recently, specialty drugs have emerged as the cornerstone of treatment for chronic and complex diseases such as cancer, autoimmune conditions, diabetes, hepatitis C, and HIV/AIDS.
Dr. Shlain brought up something I had never connected before – what we do to preserve life might cause more suffering. I learned that our bodies naturally release chemicals to help with the dying process, but when we perform medical interventions (sometimes as simple intravenous hydration), we might be inhibiting our bodies’ natural responses to death. There is still a lot to understand about suffering and dying, but what I do understand is that hospice, palliative care, and Advanced Care Planning (ACP) have the potential to greatly enhance quality of life to the end.
Advanced Care Planning
Nationwide, there is a dramatic lack of access to the skilled, specially-trained healthcare professionals that can provide the support required to prepare an advance care plan. A recent survey by the California Healthcare Foundation found that more than 80 percent of people believe it’s important to create advance care plans, yet less than 25 percent had actually done so and only 7 percent had help from their doctor. I had experienced this firsthand with my grandparents, of which I knew only two had advanced care plans and had no access to palliative care.
At the Louisville Innovation Summit, I met a palliative care physician and entrepreneur Dr. Stephen Bekanich, co-founder and medical director of Iris Plans, a telehealth platform to provide disease-specific ACP services to people with serious chronic illness. Dr. Bekanich shared that he changed the focus of his career to ACP after watching his grandparents (who raised him) go through serious illness. Even as a physician, he didn’t “have the knowledge and abilities needed to facilitate these critical discussions.”
After this experience, Dr. Bekanich trained in palliative medicine and has started and directed several palliative care programs across the country within major healthcare systems. Dr. Bekanich is convinced that ACP is among the most important things we can do when faced with serious chronic illness. ACP is a logical place for each of us to start with our own families and ourselves.
