In 2003 the renowned palliative nurse JoAnn Lynne published a set of 3 graphs. They’re called End of Life Trajectories; you can see them here. They depict how 3 of the primary causes of death in America unfold over time; the Y (up) axis is vitality and the X (across) axis is some amount of time. Cancer, organ failure (typically heart disease) and cognitive failure each project a unique slope, as a line formed by charted data is called.
This past fall it suddenly occurred to me that the 3-graph set is antiquated. I figured that it should be four, and my colleague Jennifer Ballentine (a towering figure in Colorado’s palliative care community) offered a fifth.
So I’ve added a fourth graph for medical error. While not all medical error results in injury or death, two widely recognized studies less than a decade apart identified medical error as among the leading causes of death in America—and at an accelerating rate. The first study, the Institute of Medicine’s To Err is Human: Building a Safer Health Care System, concluded in 1999 that about 98,000 annual deaths result from medical error. The second study, HealthGrades’ Patient Safety in American Hospitals showed, using Medicare data, that about 195,000 annual deaths result from medical error.
Let’s put this in perspective: at these numbers, depending on how you source or crunch the data, medical error is somewhere in the top five causes of death nationally, possibly even the second leading cause. One day, months after learning all this, the thought occurred to me that this cause of death deserved to be graphed and included with the initial three. I’ve done that and include the figure in my presentations about opting to die in peace. My graph’s slope has been agreed with by a highly regarded palliative care physician, and I footnote the figure with the previous disclaimer about how not all errors result in harm, plus that I’m the source and my “data” is anecdotal (although perhaps a better word might be “interpretive”). Actually, the figure works best when superimposed onto or juxtaposed with the three “legacy” end of life graphs since, almost by definition, medical error is likely to ensue during a hospitalization, which is most likely to ensue due to a cancer, organ failure, or cognitive decline event. Each of my trajectory renditions refers to the last twenty or so years of life; the medical error slope’s long tail indicates some years of life that are lost due to the error.
Sharing this with Jennifer she let loose with: you should graph PVS: persistent vegetative state. Major aha and eye popping moment, because a person in a PVS never dies. The tail of a PVS EOL graph extends forever, until the “plug is pulled” otherwise death never occurs, it remains “out there” somewhere (I say death; perhaps I mean to say “closure”).
If you’ve already seen graphs depicting medical error as a primary cause of death that we as lay persons, who will die, ought to account for and reckon with, and depicting PVS as an endless end-stage, in the context of making end of life choices, let me know. I haven’t. These are not the sort of visuals I would expect medicine to present. They bluntly present two very real end-stage conditions that those who really want to die in peace would be well advised to consider.