Andrew Coates: How Human Resilience Reveals An Unnecessarily Cruel System
Recently one of my patients, someone in a very frail state, insisted upon discharge the next day, over my objections. The patient's spouse was facing cancer and now was the time to be at home, not in the hospital.
But the next day, to my surprise, the patient requested continued hospitalization, not discharge. I probed, thinking that my patient had begun to grapple with the limits upon daily function that illness had imposed.
No, I learned, time together as a couple remained paramount to my patient, no matter what the personal risks. Something else had intervened.
The cancer treatment drugs prescribed for the patient's partner, I learned, were too expensive. A mail order arrangement made the drugs more affordable, but now a problem with the delivery had delayed the treatment.
My patient's spouse needed to be home to wait for the delivery, or perhaps to find out where the drugs might be, in hopes of keeping on the treatment schedule.
Instead, the patient's spouse arrived at the hospital to insist upon the discharge plan. The patient's partner had decided to delay resolving the problem with the cancer medications.
My patient in turn told the spouse that a rehab stay after the hospital had begun to sound like a better idea. The patient idea was not to burden their spouse, with cancer, with further tasks of bodily care at home.
As I spoke with each of them I further learned that they were afraid they would not be able to afford of the costs of transfer and treatment for post-hospital rehabilitation. As much as they feared being separated, they also feared financial ruin, and had just had the bitter experience of unaffordable costs of cancer drugs.
The stress and anxiety upon this couple was enormous. Yet I was awed by their love, their drive to see things through together as partners.
I was reminded of O. Henry's classic story "The Gift of the Magi," in which he sells his watch to buy her a comb for her beautiful hair and she sells her hair to buy him a chain for his magnificent watch.
But in this modern, real-life moment, all sentimentality was dashed, for the situation was not a redeeming tragedy, but a cruel farce, in which all of us seemed trapped.
Here were two people, each with serious, life threatening illness, each sacrificing themselves for the other -- needlessly. The cruelty of this system is underscored by our knowledge that the stress of advanced illness can increase the risk of death in the spouse.
We could so easily afford to provide in-home therapies that would preserve and restore personal dignity, in addition to help heal. In reality home therapies are not affordable or often don't even exist.
We have state of the art cancer treatments, but the costs of all drugs have been pushed onto individuals relentlessly. In reality patients delay and forgo necessary care because of the costs of drugs.
We should all find a deep sense of shame and outrage to think that we live in a society where our seniors, people whose lifelong personal sacrifices won the description the "Greatest Generation," are forced to make these kinds of choices.
Our society has plenty of resources to provide all necessary medical care to this couple. But we have not organized our health system to do it.
Where are the doctors? Where is the spirit of caregiving? We may be awed and inspired by the human resilience of our patients, but we work in a system that fails to serve them, fails us in our own mission.
Our profession has an obligation to change the entire culture and system of caregiving. Our heroic patients and our caregiving colleagues are counting upon us to do it.
Dr. Andrew Coates practices internal medicine in upstate New York. He is President of Physicians for a National Health Program.
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