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Choosing Wisely and the right to try (or fail)
“No society has been able to abolish human sadness, no political system can deliver us from the pain of living, from our fear of death, our thirst for the absolute. It is the human condition that directs the social condition, not vice versa.”
— Eugene Ionesco
An extremely complex issue that doesn’t seem to be disappearing is the vexed question of whether an actively dying, end-stage patient should have the right to try a novel treatment.
At first glance, it seems very reasonable that anyone prepared to take the risk — and who faces imminent death — should be allowed to exercise the element of self-determination.
The general thinking is that someone in that situation has nothing to lose, and thus should be given any chance to seek prolonged survival.
However, medical and social decision process has become much more complex, and we are now faced with the increasing impact of cost — both to the individual patient and to the community.
The costs of active treatment
Of course, I understand there is an extraordinary level of profligate expenditure in our society in many different domains, but that is not a reason to ignore the costs of medical care to the community today, particularly where action and expense do not translate into improved length or quality of life.
We need to remind ourselves that a decision to treat actively — particularly in the context of a Hail Mary pass — can cause a patient and his or her family to become bankrupt in exchange for (usually) a tiny prolongation of life, and sometimes the addition of substantial toxicity.
In this desperate situation, the clinician — and the patient/family — must carefully consider whether the patient truly has “nothing to lose.”
When approaching the end of life, many patients have impaired performance status, are physically less robust due to the impact of the cancer and prior treatment, and may have less reparative capacity of marrow and normal organ function. Thus, they may be unpredictably liable to severe toxicity.
In that setting, a patient who might otherwise be able to enjoy valuable quality time at home — and a respite from the tribulations of active treatment — runs the risk for prolonged hospitalization, symptoms and signs of toxicity, early death, and substantial fiscal expense due to the potential co-pays and items not covered by insurance.
Patients frequently are altruistic and may feel that their sacrifice may help the next person in line. That certainly is true in the setting of the optimal conduct of early-phase clinical trials, provided that the studies are well designed and executed.
However, in the setting of a patient near end of life — and particularly with impaired performance status or organ function — it is actually possible that participation in such a trial may impede progress through false messaging of toxicity or lack of response (the latter due to incomplete protocol treatment or requisite dose reduction). In that situation, substantial expense may be engendered with little benefit to the patient or society, and possibly even direct harm to both.
Choosing Wisely
The other side of this coin is the decision process within the medical profession.
As noted in prior editorials, the American Board of Internal Medicine launched its Choosing Wisely campaign some years ago, and several august bodies in our professional domain have rallied to the cause.
ASCO published two encyclicals intended to reduce the waste of resources without clinical gain, with the following admonitions:
The American Society of Hematology also has come to the party, releasing its own set of Choosing Wisely recommendations in 2013 and 2014. This year, ASH endorsed five recommendations previously issued by other learned societies. These include the final ASCO recommendation above, as well as the following:
It is absolutely clear that these professional societies are focusing on established patterns of practice that have evolved over the decades, and which clearly do not contribute to improved outcomes and/or can cause unnecessary cost or harm to patients.
In no instance is there evidence that these suggestions will contribute to worse outcomes; thus, it is not a case of sacrificing patient care in exchange for reduced expense.
More logic, less emotion
At some point, our society simply must become more logical and less emotional about health care expenditure, as well as individual and community rights and privileges.
We already know we spend more on health care in the United States than any other Western society, but without a proportionate improvement in outcome. It is often said in other countries that the United States is the only nation with a population that believes death is an option.
In the sad farce that seems to be representing the worst in current U.S. political campaigns, it would be helpful if the more thoughtful presidential candidates would spare some time to abandon nonsensical rhetoric in favor of addressing some of the crucial issues facing the world. Health expenditure, linked to measured value and outcomes, should be high on that list.
Having little confidence that this will happen in 2016, perhaps we can redouble our efforts to regulate ourselves, and to bring evidence and logic into the decision process on issues like thoughtful reconsideration of right-to-try legislation and expansion of the Choosing Wisely campaign.
For more information:
Derek Raghavan, MD, PhD, FACP, FRACP, FASCO, is HemOnc Today’s Chief Medical Editor for Oncology. He also is president of Levine Cancer Institute at Carolinas HealthCare System. He can be reached at derek.raghavan@carolinashealthcare.org.
Disclosure: Raghavan reports no relevant financial disclosures.