As many of her friends and family have done, Jean has stood on the shores of life with her arms around her frail, aging parents, doing her best to ease their passage into the next world with comfort, grace, and gratitude, in accordance with their wishes.
And, as many of her friends and family also have done, Jean and her parents wondered if there might be better ways to navigate the complex decisions around aging, palliative care and end-of-life realities during what was for them, a very long, often painful, decline, even with solid resources and the most compassionate of clinicians.
Although they were able to die in the company of loved ones, the holy grail of the “squared morbidity curve” was tragically elusive.
We are in an unprecedented age of life extension due to technology without commensurate advances for choosing the quality of life we want during that extended time, much less ways for paying for everything. No previous generation has ever faced these questions. No previous generation has faced the rise of chronic diseases as critical illnesses decrease – the double-edged sword of medical and public health advances. No generation has faced such a “medicalization” of aging and dying. And no generation has had such a large proportion of elderly people. Fortunately, with this oncoming "silver tsunami*", we'll have a lot of global company on the shores of life to help find answers.
So, where are we now?
Instead of a protracted medicalized aging and dying, many find the idea of an enjoyable “healthspan” linked to the “squared morbidity curve” and a peaceful death in the company of loved ones, to be appealing.
There are many thoughtful initiatives gaining support for navigating our healthcare systems and regulatory environments to ensure that our choices are honored at different points along the continuum of healthy aging and graceful dying, such as The Conversation Project, Death Café, and Compassion and Choices**.
Even more heartening, are the opportunities for choices based on self-driven technology for accessing data trends within our own bodies and using data visualization to understand them. Scientists, like Larry Smarr (UCSD astrophysicist), are on the frontiers of bio-sensing wearables and implanted technology and analytics for genomic, metabolic, and biomic data. They are sharing at places like FiRe (Future in Review), TED, TEDMED, and Quantified Self forums, as well as in mainstream publications, such as The Atlantic. They are sparking curiosity and hope as they demonstrate the predictive value of individualized trending (not single point) data for health monitoring, disease detection, early intervention, treatment, and strategies for quality of life considerations, such as choosing among treatment options, including palliative care.
A larger context for our bodies’ own data comes from population big data - specifically data that reveal actionable decision points for patients and families in the trajectories of the most common chronic diseases. Data visualization can provide transparency and interpretation for integrating these trajectories with self-generated data. While clinicians’ expertise is invaluable, patients and families and peers will bring ever more rich knowledge to the table.
So what questions should we be asking to bring these opportunities into our lives?
How can self-driven data technologies and big data analytics and visualization help us to lengthen our health spans, square our own morbidity curves, and support dignified, personalized choices at our end-of-life?
The world's aging populations await. Looking forward to joining you in this conversation.
*Thank you, Eric Dishman, (Director, NIH “All of Us” population-based research program on precision medicine, formerly Intel fellow, VP Health & Science Group) and The United Nations' Population Fund, which estimates that by 2050, people aged 60+ will make up 22 per cent of the global population.
**Examples of projects touching on aspects are The Conversation Project (about death), DeathCafe, B.J. Miller's Zen Hospice Project, Compassion & Choices, Death with Dignity, George Soros’ The Project on Death in America, and Anthony Back’s VitalTalk (physician-patient training for difficult conversations), as well as strategic resources from places such as Robert Wood Johnson, the Dartmouth Atlas Project, and industry landscapes, such as Deloitte's UK reports on TEC (connected health or technology-enabled care), PKB (Patients Know Best), a patient owned healthcare record system that integrates into the UK's NHS secure network with worldwide access by patients and clinicians, part of the NHS’s Innovation Accelerator, and Michael Kurisu (Director, UCSD Center for Integrative Medicine, founder of Project Apollo and 501c3 Precision Healthcare Ecosystem for greater patient control of their health.)
***Thank you to Atul Gawande (“Being Mortal” 2017) and Samuel Harrington (“At Peace: Choosing a Good Death After a Long Life” 2018).