When I was a hospice physician, I participated in the care of many patients who had thrown in the towel medically. They had elected to engage the benefit of hospice care, which, simply, is to provide comfort care for the terminally ill. These people were often cancer patients who had undergone difficult cycles of chemotherapy. Even though they understood their lives could be extended with more aggressive medical intervention, they decided that comfort at the end of life was the priority over further months of arduous and painful existence.
There were many other conditions that caused patients to elect comfort over longevity. Almost inevitably, the hospice care afforded them a comfortable and dignified passing.
At the heart of such stories is the notion of quality of life, rather than the mere length of life. Many countries (Britain, Canada, Costa Rica, Chile, Singapore, for example) use the concept of “health span” in determining the usefulness of various medical interventions, including pharmaceuticals. The idea is to prioritize the amount of years people can expect to live in good health, rather than the raw number of years lived. Britain has set a policy of 75 years for a healthy life expectancy.
In the United States, the emphasis is length of life, at least as reported in yearly mortality statistics (which, alarmingly and depressingly, recently show decreasing life expectancy). Researchers and policy mavens, on the other hand, pay attention to “quality adjusted life years” (QALY). The concept is easy. Suppose drug A bestows an additional life expectancy of six months, but has many side effects. Drug B results in the same life expectancy, but is virtually free of side effects. B is clearly a better drug, and advice to Medicare, for instance, would be to buy drug B for Medicare beneficiaries. In real life, choices are usually not so clear, but you get the idea.
According to a “viewpoint” article in the June 27, 2023 issue of the Journal of the American Medical Association (which was the impetus for this blog entry) , there is a bill in Congress that would prohibit government healthcare programs (including Medicare and Medicaid) from integrating the concept of QALY into using it in outcome measures. The apparent rationale is that the use of QALYs will discriminate against older adults. This ignores the fact that QALYs are not used to determine treatment decisions for individual patients. Rather, they are used to measure the net incremental benefit of new medical interventions for an entire population compared to the current standard of care. Specific therapeutic decisions are left to the patient and doctor.
I cannot fathom why some elements of Congress are taking out after QALYs. On the other hand, there is precedent for decisions in healthcare that are fueled by the bizarre.
In the summer of 2008, Medicare proposed an explicit payment to physicians when they talked to patients about end-of-life decisions. The rationale for this was strong: primary care doctors usually have little time to talk to patients regarding issues around these decisions. They need to attend to patients’ more pressing needs–diabetes. hypertension, dementia, and the like. An extra reimbursement would allow doctors the time to discuss options at the end-of-life. There was to be no agenda: doctors could simply discuss different options, including hospice care if the patient wanted it and was appropriate for it.
The Republican vice-president nominee, Sarah Palin, however, decided that this idea was tantamount to creating “death panels.” This resulted in Medicare being pressured to withdraw the initiative, although, under the Obama administration, the idea was finally implemented.
What do you think?
Survey after survey show that Americans value quality of life over longevity. This flies in the face of the congressional effort to eliminate QALYs in the analysis of what is a useful medical intervention. What do readers of this blog think?