H&HN Web Exclusive
End-of-life decisions are one of health care's most intricate and delicate problems, and one a lot of us avoid. Running time: 3:33.
Several years ago, completely out of the blue, I experienced what could accurately be described as a catastrophic neurological event. With its average survival rate of 7 percent, I came close to being in that statistically small number of people who unexpectedly, suddenly check out.
Thanks to great clinical professionals, two weeks of high-tech hospital care and eight weeks of low-tech, but very effective physical rehab, I was back to my usual graceful, semi-alert self.
What changed was the dawning of reality: Things can happen quickly and irreversibly. I went about, as they say, painstakingly putting my affairs in order — making lists and checking off tasks and technicalities as I went.
But did I make a living will, an advanced directive? Nope. Did I have a conversation with my daughter or a good friend about what I would want in case of diminishing, terminal illness? Nope, I did not. I meant to, but, you know, the time just, well, never seemed quite right. Denial is so convenient.
Unfortunately, I am not an anomaly. I am the majority. Most Americans do not have an advanced directive nor do they get around to having that all-important conversation with loved ones. If the conversation ever does take place, it is at the worst possible time under the most stressful conditions.
The majority of us say we want to die at home with loved ones, but, as we know, that's not what happens. Most die in the hospital, tethered to machines and beyond the reach of human touch, and sedated past the point of awareness and coherence. No last words or final goodbyes spoken here.
From our perspective, end-of-life care is one of health care's most intricate and delicate problems. Economically, 25 percent of all Medicare spending is for the 5 percent of patients who are in their final year of life, and most of that money goes for care in the last two months, which many argue is of dubious benefit to the patient. Clinically, physicians are put in the position of navigating the most difficult of conversations. And because the family may be conflicted, with no clear idea of their loved one's final wishes, the physician finds himself in what some term the "default" position — as in "Do something, do anything. We can't give up hope." And the family is awash in uncertainty, grief, and, sometimes, clashing viewpoints.
All of this because, to some degree, a conversation never happened — a conversation that should have taken place long in advance of the time of crisis.
Palliative care is becoming a staple in many hospitals, but Gundersen Lutheran in La Crosse, Wis., makes sure that the conversation takes place. Gundersen's 25-year-old advanced-care planning program helps patients understand end-of-life issues and explains alternatives. Nearly 90 percent of patients have an advanced directive.
Now then, what about you? Is there someone you should talk to?