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Who Decides What Is Best for the Patient?
Cost Equations, 'Quality of Life' Ratios and Generalizations Threaten Real People
By Denise Hunnell, MD
WASHINGTON, D.C., March 13, 2013 (Zenit.org) - There is an interesting juxtaposition of articles in the Feb. 27, 2013, issue of the Journal of the American Medical Association (JAMA). The first piece is a moving account of a medical student's 90-year-old grandmother undergoing a hip replacement. The medical student describes her grandmother as smart, energetic, and sassy. However, after six months of worsening hip pain and an increasing reliance on either a cane or a walker, her grandmother was ready to take the plunge and have surgery. But not every orthopedic surgeon was willing to take on a nonagenarian for such major surgery. One doctor suggested to her that it would be better to live out the rest of her years with some hip trouble than to submit to the risks of surgery followed by weeks of rehabilitation. This physician had only just met this elderly woman, yet presumed to know what was in her best interest better than she knew herself.
Clearly he had underestimated the strength of this woman. She did have the surgery, and endured six weeks of vigorous rehabilitation. And then she strode into her surgeon's office without pain and without the use of a cane or walker. She had triumphed over both her hip ailment and the naysayers who were ready to write off her remaining years.
In this same issue of JAMA, is an article by Drs. Jon Tilburt and Christine Cassel on the merits of parsimonious medicine. The dictionary definition of parsimonious is "frugal to the point of stinginess." The authors explain that their intention is to eliminate wasteful and ineffective diagnostic and treatment modalities, which makes the idea of parsimonious medicine more palatable. There are countless medical practices that have little value yet have worked their way into common use. For example, whole body CT scans are widely employed to screen for hidden illnesses in patients who have no symptoms to suggest the presence of a disease. Pap smears are useless for women who have had complete hysterectomies yet thousands are done every year.
The American Board of Internal Medicine (ABIM) Foundation developed an initiative called "Choosing Wisely" to help medical practitioners identify low value and ineffective interventions. In cooperation with this endeavor, a broad coalition of medical specialty organizations have compiled lists of interventions to be avoided.
In theory, the practice of parsimonious medicine as described by Tilburt and Cassel seems to be a reasonable approach to the ethical practice of medicine. The authors take great pains to distinguish parsimonious medicine from the rationing of medical care. Parsimonious medicine is about maximizing the benefit and minimizing the harm for every individual patient. In health care rationing, beneficial therapy or diagnostics are withheld from one patient category in order to redistribute the resources to another patient category. In the former, medical interventions are being evaluated and judged as to their worthiness for the patient. This is entirely ethical. In the latter, patients are being evaluated and judged as to their worthiness for care. This is ethically unacceptable in routine medical practice.
Of course, the devil is in the details. There are many who would argue that a hip replacement in a 90-year-old woman is both ineffective and wasteful. My own great aunt suffered from congestive heart failure due to ischemic heart disease. She underwent coronary artery bypass surgery when she was in her late 80s. She subsequently lived to be 102, leading a very active life with minimal medications and only routine medical care. Should she have been denied heart surgery because the average woman of her age does not benefit from such aggressive therapy? Does an extra 15 years of life for an octogenarian justify medical care? Many medical professionals would argue that both the 90-year-old grandmother and my 87-year-old great-aunt had lived long enough and were no longer entitled to expensive medical care. But as medical student Kelly Sloane asks in the first article, "When did old age become a crime punishable by death?" Age alone should not be grounds for denying medical care.
Drs. Tilburt and Cassel write:
Thus, the practice of parsimonious medicine, were it to become widespread, could have the additional collateral benefit of freeing resources that could be used to provide care for those who are currently disadvantaged and underinsured or uninsured. But those potential consequences are not the primary ethical basis for parsimonious care-concern for individual patients is the primary focus.
Unfortunately, current health care reform efforts have lost sight of the individual patient. While purportedly aiming to improve medical care, broad generalizations are applied in a one-size-fits-all manner to every patient. For example, a 48-page report by the British Lancet Oncology Commission offers recommendations to reduce the costs of cancer care. Among these is the radical assessment that disease-free survival (DFS) and progression-free survival (PFS) are not adequate endpoints for cost effective cancer therapy. The only statistic that matters is overall survival (OS) or cure rate. This means that therapy that merely puts cancer in remission or prevents it from progressing but does not attain a cure is not cost effective. In other words, it may be considered wasteful to extend the life of a cancer patient if he is going to die of his cancer eventually.
The authors of the Lancet report also hold up the British National Health Service National Institute for Clinical Excellence (NICE) as the model for determining who receives care. Under this system, patients are reduced to a number that represents the number of "quality" years they are expected to survive. This is not the same as life expectancy. Quality years are years that they are expected to live with minimal disability and to need minimal outside care. The patients are allotted £30,000 per quality-adjusted life years (QALY). If the therapy exceeds this amount, it is denied. They also note that in the United States, the Patient Centered Outcome Research Institute (PCORI) that was established by the Affordable Care Act can potentially do the same thing, but has not yet been given the legislative authority to make such definitive care recommendations.
Unlike the advocates of parsimonious medicine, these physicians put reducing costs above the well-being of individual patients. They claim that requiring care or assistance with the activities of daily living reduces, if not negates, the value of life. They seek to usurp the authority to make choices about medical care and ignore the uniqueness of each patient and each medical situation. Such a system denies patients their right to weigh the burden of, for example, cancer therapy against the benefits of additional weeks, months or even years of life. Yet, like Drs. Tilburt and Cassel, this group of oncologists asserts they are acting in the best interest of patients.
Clearly, many physicians and other health care professionals think they know what is best for patients. But generalizations are really bell-shaped curves and there will always be outliers. The intrinsic dignity of each patient must be respected, which means every patient deserves to be evaluated in light of his own unique individual circumstances. Health care providers have a duty to educate, inform and guide patients with regards to medical options. In the end, however, it is the patient or his designated surrogate who must weigh the burdens and the potential benefits of care and decide what is in his best interest.
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Denise Hunnell, MD, is a Fellow of Human Life International, an international pro-life organization. She writes for HLI's Truth and Charity Forum.
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