Joanne and I are soulmates. We both tilt at windmills. The most frequent response to my entreaties to restore soul to our "profession" is "wishful." "We think your stuff is swell but it is wishful." I am sure that she has heard the same lame lament to her idealisms.
I have not had dealings with Joanne for several decades since I was president of the American Geriatrics Society in 1980. At that time I was tracking Joanne as she was the advocate, almost alone, of the withholding of food and fluids at life's terminus as an alternative to assisted suicide. Her work directed much of my personal philosophy and practice. Now several decades later her teaching is even more impressive and compelling.
Joanne was a graduate of Boston University School of Medicine in 1970. From there she sought a master's degree in philosophy and social policy from George Washington University in 1994 and a Master of science diploma from Dartmouth in 1995. En route she served as project director the President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research, concluding with their seminal report dealing with the decision to forgo life-sustaining treatment. Along the way I have been tracking her, and actually sent a few little checks to her in the effort to support her work. Her teachings influenced my first book title which was "We Live Too Short and Die Too Long," and also helped generate a paper that I wrote in the Journal of Geriatrics Society called the "Trajectory of Dying." Now several decades later and having survived my wife's long dying her teachings achieve greater poignancy.
Others such as Tom Perls at BU have explored life's terminus. Tom categorizes the end as escapers, survivors, and delayers each with its own characteristics.
Joanne wrote a wonderful report for the Hastings Institute entitled "Living Long in Fragile Health... the New Demographics that Shape End of Life Care." Her work is a clarion call to a potential global specter that soon may engulf us all. It will be a catastrophe if we fail to heed the imperative implications that will surely result from the global aging epidemic. The rest of the world's work will default to the socio-economic-political fallout that is sure to permeate our newly old and FRAIL globe. Abandonment of our older selves to an alien world with scant recognition of the peril in our midst is spooky.
Joanne writes of the three predominant trajectories of life's terminus that are newly in effect. The first is the group of deaths due to cancer, around 20 percent, usually in the 60-year age range. These are relatively acute with much technologic involvement, hospital intensive, pain, and is expensive.
The second category on Joanne's list is that large segment, perhaps 20 percent of deaths that result from the disruption of a vital organ such as the heart or lungs or kidneys or liver This trajectory is less acute, occurs later generally in the 70s, and also involves a high risk of hospital and institutional involvement. But it is the last category where the main threat evolves. This is the trajectory that is now starting to dominate. It is the chronic slow decline of multiple organs importantly involving the brain leading to a protracted dependency and indignity. Having just concluded such a scenario in my own home raises my awareness to a degree that I wish I was not so familar.The burden of care giving to the frail among us cannot be overstated. It is this third trajectory that Joanne warns us all about. As awareness of the world's aging is not really constituted in our awareness, we are destined for a future of shame and deterioration. Joanne's is a warning siren that we best heed.
Lynn J Improving End of Life Care: Why has it been so Difficult? Hastings Center Report Special Report 35 2005, S14-S18.