Narrative Matters recently brought together 80 writers, journalists, and academics to celebrate the Tenth Anniversary of Narrative Matters. There was much to celebrate: over 150 Narratives published in Health Affairs that covered a spectrum of human stories set in the increasingly institutionalized health care system. We came to celebrate the power of stories and storytelling in the human drama of health. A diverse group of men and women from a variety of backgrounds attended; the common denominator was a dedication to the health narrative.
It was a needed function. There is an often-unarticulated human side to every profession, but the healing professions have a special need for articulate writing. No other profession is as complex; no other profession finds us as needy and vulnerable. Health care delivery has gone from the family doctor of my youth to mostly large institutions and group practices. It has gone from mostly touch to mostly technology. That doesn’t necessarily translate to indifference or uncaring, but it clearly challenges the human and humane side of health care delivery.
I had written one of the essays and was honored to be asked to attend and be on a panel “Stories and Policy: Policymakers’ Roundtable,” moderated by Susan Dentzer. I could sense the tenor of the conference on the way in from the airport to the site of the conference. The van, after the initial awkwardness of strangers, was filled with narratives of the health delivery system, much of it on the tragedy of unmet need. One woman told of the need for more translators in more languages in hospitals. Another added a story of a deaf man who had an appendix attack and was not given a signer, another on the cruelty of health reform not covering illegal aliens.
I served as governor of Colorado for 12 years and was no stranger to unmet need. Yet on that initial ride and all the way through the conference, as I listened to the human stories articulately told, I felt a growing frustration about my inability to articulate how difficult it is to balance a budget and draw lines. How could I articulate the agony of decision making and the need to say both “yes” and “no” to need? No modern nation can provide all the “beneficial” health care to all citizens. In a system filled with near-miraculous technology, need cannot automatically convey a duty to fund.
The price of compassion in our new high-technology world is restriction. The public expectation of all “beneficial” health care is a fiscal black hole that will quickly bankrupt this great country. How does anyone articulate the need for limits without sounding like an uncaring misanthrope? Yet such articulation is necessary lest we crowd out all other public spending. A modern State has a myriad of funding needs, roads, schools, prisons, the justice system—the list is long. Could it be, I asked myself, that narratives matter too much?
In the Christian tradition, there is a story about Saint Martin of Tours who in medieval times was riding his horse through the cold, deepening night toward the walled city that was his destination. Right outside the gate to the city he met a cold and starving beggar. In an act of charity that lives in the Christian tradition, Martin of Tours divided his cloak in half and his dinner in half and gave half of each to the cold and starving beggar. It was clearly the ethical and moral course to take. It has served as an example of Christian charity for centuries, and the Church made Martin a Saint hundreds of years later.
Yet Berthold Brecht in one of his plays raises the issue of what, instead of one cold and starving beggar, there were 40? Or 100? What then is the duty of of an ethical and moral person? It obviously does not make any sense to divide one’s cloak into 40 or 100 pieces. There is no reason to choose one among the many cold and starving beggars, and it is hard to solve this dilemma other than by perhaps saying a prayer for them all as you ride past them into the city.
Individual Need Versus Social Need
When it was my turn to speak, I described the current spending patterns in the United States, growing at 2 ½ times the rate inflation as unsustainable. I maintained that modern health care is infinitely expandable, and in my opinion there was an unavoidable conflict between individual need and social need. No trees grow to the sky, and nothing in any public or private budget can grow long at 2 ½ times the rate of inflation. I described that being in government and having to balance a budget is like sleeping with a blanket that is too short. If your shoulders get cold and you pull up the blanket, your feet will get cold. There is no end to public need.
I was listened to politely, even to an occasional nodding head and some complimentary comments. But the default emotion was unmet need. Yet the agenda didn’t dwell on unmet need. We were there to discuss, and hopefully perfect, the art of the narrative. These writers were dedicated to getting the story right, double checking the facts, improving their writing skills, and they cared deeply about public policy and frankly had a better understanding of the budgetary dilemmas than most Americans. They cared deeply but not blindly. But it was caring, not budget balancing, that led them into the healing arts and their writing craft in the first place.
They didn’t need me to articulate the budgetary position. I hazard that everyone in the room knew the budgetary challenges, some better than I do. The human animal is a caring animal, and many of the narratives we were celebrating didn’t require more resources: a little more understanding, a change in attitude, a smile, a little more time listening. The purpose of Narrative Matters is to tell a compelling story and show that health policy has human consequences and that should not primarily be about budgets. Yet…
Loving your neighbor is not a distributional issue but subsidizing your neighbor is. The challenge of modern medicine is to see the inevitability and desirability of forming procedures and strategies that fit infinite demand into finite resources. In 1988, Oregon State Senator (later Governor), John Kitzhaber was called “Dr. Death” on the front page of the Denver Post. Kitzhaber, a physician/legislator was instrumental in developing the Oregon Health Priorities system. When Medicaid funding for transplants ran out, Kitzhaber suggested that Oregon shouldn’t fund high-cost transplants until all women in Oregon had prenatal care. He soon expanded this thinking to apply to all Medicaid monies and to suggest that basic health care should be funded before some high- technology procedures. Oregon decided to ration benefits instead of people. Kitzhaber’s metaphor was “to get everyone in the tent, even if we have to thin the soup.”
Then an 8-year-old by the name Coby Howard presented to the system his need of a bone marrow transplant for a long-shot chance to put his leukemia in remission. Oregon didn’t back down, and Coby Howard died on the front page of many of the nation’s newspapers.
The same year, California voted to pay for transplants (Why should they take that kind of heat?); then one week later, California knocked 270,000 low-income women off of their Medicaid program. This action was examined in a couple of health journal articles that showed clearly that California’s action resulted in much more mortality and morbidity. But it was not controversial. The United States is well practiced in leaving people out of the system.
I was reminded again and again that the devotion of a physician to his or her patient is a key foundation of most health care systems, here and abroad. One physician gave me a 20-minute exposition about not making him the rationer. Rightly so. For two thousand years physicians have been patient advocates. But how do we fit that into a world of limits, I asked. It wasn’t his problem. Correct, but it is our problem as Americans.
Stalin once said, “One man’s death, that’s a tragedy, a million men’s death, that’s a statistic.” It is so difficult to argue for the larger anonymous public. People see so clearly their self-interest and that of their loved ones but not how their need fits into the broader public policy. Every driver in a traffic jam disclaims responsibility for the traffic jam. “Every snowflake in an avalanche pleads “Not Guilty” goes a song from my youth. But it is still an avalanche and it is still a traffic jam, and some institution must look at the broader canvas, and physicians have to be part of that institution. They are indispensible to assessing the individual situation. But public policy can never be the sum total of individual need. Neither physicians nor the legal system excel in seeing the broader issues involved in modern medicine: few judges turned down women with Stage 4 breast cancer who sued their insurance company for autologous bone marrow transplants, and billions of dollars later, we found that such transplants caused more harm than good.
What Is The Morally Correct Number Of Subsidized Prescriptions?
The second morning an N.P.R. editor described a particularly graphic example of need. A woman in Tennessee on Medicaid developed a strep throat and was prescribed an antibiotic. But the woman already was using her 5 prescription per month Medicaid entitlement and she had to either leave the strep untreated or drop one of her other prescriptions. She describes dramatically to the N.P.R. reporter the agony of such a decision and how she, not unreasonably, let the prescription for her bladder disease lapse in favor of the strep medicine, and had to buy diapers to deal with the results. The story would have made a stone cry.
Wait a minute; I said to myself, few states have tried as hard as Tennessee to incorporate the medically indigent. Tennessee has one of the lowest tax bases in the nation, and they brought themselves to the verge of bankruptcy trying to maximize coverage for the uninsured. TennCare set itself up for a story like this by trying to cover as many of the uninsured as possible even if they had to give fewer benefits to the newly expanded population (“thinning the soup”). If Mother Teresa had been the policymaker in Tennessee, would she not have also tried to maximize limited resources to achieve the most health for the population? If Tennessee had doubled the allowable prescriptions, would there not still be stories like this? What is the “morally correct” number of prescriptions for a state to subsidize?
Inescapably, the price of modern medicine is to decide what “beneficial” medicine we can morally deny people. That sounds so harsh, even to my ears, but we cannot give the Hippocratic Oath a blank check. In twenty years America will be running a nation of 50 Floridas. Our aging bodies can bankrupt our children and grandchildren. We have simply invented and discovered more things to do to aging bodies than our deficit-prone society can pay for. Our medical miracles have become fiscal failures. What price my aging body?
Equally important, we must expand our moral imagination. America denies more health care to more people than any developed country. An unidentified life is no less valuable than an identified life, however incorporeal. We should not give up an inch of moral high ground by speaking in statistics on their behalf.
Budgets are an empiric process that cannot be evaluated by the medical ethics of the doctor-patient relationship. Public policy cannot define “ethical” one individual at a time. A governor’s “patient” is the whole society. Health policy is not an island, but is instead part of the landscape of many needs. It simply has a different moral radius. It must, of necessity, look beyond the individual to the justice of the whole system. It is a world of narratives, it is also a world of trade-offs, priority setting, and (yes) rationing.