Hard choices and healthcare reform are here. Donald Berwick, M.D., has been installed as the administrator for the Centers for Medicare and Medicaid services as a “recess appointment” by President Obama.
Dr. Berwick is an academician, a pediatrician who has spent the bulk of his professional existence as the CEO of the Institute for Healthcare Improvement of Cambridge, MA. He is an outspoken advocate for the single-payer system, admires Britain’s National Health Service, and advances that all health care be linked to “quality metrics.” In effect, that care is permissible only if and when it conforms to consensus guidelines written by experts. A “pay-for-performance” program derived from these “best practices” will, in the view of Dr. Berwick, “bend down the cost curve.”
Deviation from the guidelines will be viewed as an insurance fraud, perpetrated by medical professionals and criminalizing their behavior. In Massachusetts, the purported healthcare model of Obamacare, there are carrots but also sticks: physicians who fail to comply with quality guidelines established by state insurance administrators are publicly discredited and their patients are required to pay three times as much out of pocket to see them.
Be ready for this narrative. This will be the politically correct language and manner to describe 21st century American Healthcare. And it will impact you, your family, your friends and your neighbors. But what about your children?
According to lead articles in the New England Journal of Medicine and JAMA end-of-life expenditures are under scrutiny as a potential means to help reduce “waste” in healthcare. This will be amongst the first issues addressed by Berwick.
Medically futile care is defined by the absence of clinical benefit despite multiple interventions. At present, the all too familiar end-of-life sequence of the life-supported elderly Alzheimer patient in multisystems failure dominates healthcare bioethical discussions. But it’s not just the elderly who will arrive at these crossroads or for whom health care resources are likely needed.
Let’s focus on pediatric issues for a moment, for a minor cannot participate in medical decision making (except in rare circumstances). Children (under age 18) are not consent partners. Children “assent” to treatment.
What is the value of a child’s life? How is this determined? By whom?
Up until the 20th century, most societies accepted childhood death as the way of the world. The custom of referring to a baby as “it,” a term never applied to adults even when gender is ambiguous, betrays this attitude. Limitations on the legal rights and status of children grew in part from these circumstances and realities. The notion of concentrating medical resources on society’s productive members, namely, adults, also stems from this tradition.
In ancient Rome, human life in the biological sense was considered to begin with the first breath. Yet, it was not until the person reached young adulthood that he became a person in the moral sense, with the full protection of the moral rule against homicide.
In ancient Greece, an entire literature of recognition of a defective child was created that allowed for the destruction of the newborn for the betterment of society. Aristotle in his Politics and Plato in his Republic advanced that the best interests of society were served by infanticide when a variety of conditions were met. These included rape, incest, adultery, parental age, defective births, etc.
Today we seem hopelessly locked in debate over motherhood versus womanhood, with little if any insight or flexibility from any of the strident political voices involved. What should be, if any, the role of government? Humanism and cultural consensus are ill served by these debates, and positioning and posturing. But it does extend to our definition of the value of human life at its onset for this society.
The twentieth century brought improvement to the lot of our children. Child labor laws begin in 1916. Education began to be considered to be every child’s right. Medical and surgical care for children was shockingly primitive as late as 1941, when Harvard Medical School established the first chair in child’s surgery. Up to that point in time, and even for a period thereinafter, children were in general regarded as too weak for most surgical interventions. The fact, again, that children could not speak for themselves left this surgical dogma unchallenged.
And children are still not a recognized voice in the healthcare debate other than via “interest groups.”
The remarkable advances in pediatrics from immunizations to advanced life support in 24 week old fetuses to intra‑uterine fetal cardiac procedures to separation of conjoined (formerly “Siamese”) twins to organ transplantation have carried hefty price tags.
Who has demanded this technology? Why have we willingly paid the prices for this care? Is there any value to advanced rehab in a post‑trauma quadriplegic child or advanced life support in an HIV positive infant? What about the autistic child, or the multiply genetically defective (“impaired”) newborn?
Are limited or sparse assets or available resources to become the only basis for therapeutic decisions?
Arthur Kohrman states that “Preserving the lives of children attached for long periods of time to technological devices extends not only the lives of human beings but also the definition of being human …” Technologically dependent people are difficult to construct ethical systems for. Is the child‑machine combination a being in its own right, or just a stage in a medical metamorphosis? Would the children of the Iron Lung Age survive in the twenty-first century?
The definition of medical futility as a concrete concept deserves to be utilized carefully and not automatically.
At issue is not whether or not futility is definable, but rather is it good and sensible public policy to admit a legalized and narrow standard? Criminalizing healthcare delivery, developing punitive consequences for failure to adhere to a fictionalized consensus guideline will be arbitrary, fraught with inequity, and bureaucratize the medical profession beyond any reasonable threshold.
This is not healthcare reform. It places the system’s needs beyond the individual’s.
“If you don’t know where you’re going,” Casey Stengel liked to say, “you will probably wind up someplace else.”
Jeffrey Hall Dobken is an assistant clinical professor of pediatric immunology and allergy, and certified bioethicist at Weill Cornell School of Medicine in New York City.
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