Healthcare decisions: Rational or rationed?

James Holly, M.D.

In 2009, the New York Times published an extensive article that promoted the rationing of healthcare as the only way to manage future costs. Subsequent letters to the editor responded positively and negatively to the article written by Peter Singer of Princeton University, Previously, Singer wrote a letter to the 1985 Journal of Pediatrics in which he argued that a pig might have greater value than a human child who was born with severe birth defects. Subsequently, Singer proposed that a newborn would not be considered a child until at least a month after birth, during which time healthcare professions could determine that the child had no value to society and therefore could be euthanized.

In the 2009 New York Times publication, an opinion piece appeared that reviewed the current state of technological advances in medical science and discussed them in relationship to healthcare policy, asking the question, “How much longevity does a person have the ‘right’ to?” The suggestion was that a judgment as to the resources society should expend upon a person could be based on the person’s contribution to society, or even upon their ability to make a contribution. More subtle than Singer’s position, it starts at the same place: A human being has value only based on mental or physical ability, contribution to society, or the potential for contribution to society.

The Declaration of Independence of the Unites States of America begins with the statement, “We hold these truths to be self-evident, that all men are created equal; that they are endowed by their Creator with inherent and inalienable rights; that among these are life, liberty, and the pursuit of happiness ...” “Inalienable” means “incapable of being repudiated or transferred to another” and “not subject to forfeiture.” Neither the individual nor the government can surrender, remove or abrogate these rights. No government, no jurisdiction, no law, no policy and no other instrument of social or governmental decision-making can make a distinction between human beings for the purposes of limiting access to healthcare on the bases of any other asset, liability, capacity, incapacity, productivity or lack thereof.

This must then be the context of the discussion of healthcare policy: the social doctrine of our community that establishes irrevocably the value of the individual based on that individual’s “humanness” and not on the basis of their wealth, education, station in life, productivity, or other performance measure.

If this is the foundation of the discussion, how do we deal with “rationing” of healthcare versus the “rationality” of healthcare decisions? Furthermore, what are the “rights” each individual can claim to healthcare; what are the “responsibilities” each individual has for his/her healthcare, and what are the “realities” of the circumstances in which those “rights” and responsibilities” must be exercised?

Rationed Care

The rationing of health care has occurred in various forms in the U.S. and Western Europe post-World War II era. Massachusetts enacted a controversial rationing program during the 1980s that was subsequently repealed.

Rationing in healthcare is not defined by a contractual relationship in which the government agrees to pay for certain procedures but not for others. Rationing occurs when distinctions are made between individuals within a group, in which case it would be declared that a certain procedure would be paid for if a person is below a certain age, or if a person is mentally competent, or if a person is able to communicate, or if any other subjective condition is placed upon a person’s individual and personal qualifications for care.

If “life” is an inalienable right, laws or policies whithatch differentiate between individuals on any basis other than their humanness is a violation of those individuals’ constitutional rights. This would not preclude society from declaring contractually that it would provide a certain level of care to everyone but another level of care to no one.

Rational care

“Rational care,” on the other hand, is that care determined by an individual or his/her legal, personal representative, next of kin or guardian. This care would constitute that which is made in consultation with a personal healthcare provider and could include the withdrawal of current care, or the withholding of extraordinary means of life support based on the individual’s, or in the case of the individual’s loss of competency, the family’s, decision. This would include the rational decision not to support life with extraordinary hydration and/or nutrition, ventilation or intervention with invasive or non-invasive procedures. What the government may not do without “rationing” care the individual or the individual’s family can do on the basis of “rational” care.

There is a time to die. While the Constitution implicitly and the Declaration of Independence explicitly does not even give the individual the right to abrogate their “right to life,” it is not necessary to prolong life artificially. It is a rational decision to recognize that at some point, no matter what is done, no positive result will occur. It is rational to decide to go home, to be with your family and to allow the natural course of life to transpire with the loving support of family and healthcare professionals who can make that process comfortable.

Elements of rational healthcare

• It is evidence-based, not be based on opinion, experience, prejudice or personal bias. It should ONLY be based on sound science. Unfortunately, there is not always sound science available in every condition, but where there is, it should be the basis and standard of rational care.

• Its foundation is a healthy lifestyle. Any claim to a right of healthcare has to be based on the responsibility of a lifestyle that includes exercise, weight control, temperance and no smoking, to name a few.

• Its foundation is also based on preventive care. Rational care must include the demand for appropriate preventive care including immunizations and evidence-based screening procedure.

• “Expensive” and “excellent” are not synonyms, and more healthcare is not always better.

• Technology cannot add value or quality to life and does not always add quantity. The things that make our lives valuable are not driven by technology and ultimately, nor the length of our lives.

• The object of healthcare decisions is the welfare of the individual and not of the family. Very often, healthcare decisions and the associated cost of those decisions are not made for the benefit of the patient but for the benefit of the family. Guilt for past neglect of a family member or for unresolved conflicts cannot be remedied by irrational care at the end-of-life or in a healthcare crisis that is hopeless.

• End of life decision should be made before the need arises. Every person 50 and above, and those younger than that with serious, chronic illnesses, should have a serious conversation with themselves, with their families and with their healthcare provider about their desire for care in a life-threatening situation.

This is a complicated discussion but when dealt with based on principles, it can be consistent with our values and beliefs.