Thaddeus Mason Pope, J.D., Ph.D.
Faith Smith was born with Trisomy 18. She was also diagnosed with a hole in her heart. An initial consultation with Faith’s cardiologist determined that her heart problem could be fixed. But after learning that the Faith also had Trisomy 18, the cardiologist advised Faith’s parents that nothing should be done.
Faith’s case has garnered significant attention, including that of the Michigan legislature. On Tuesday, the Michigan Senate passed a bill that will require healthcare facilities to disclose their futility policies. S.B. 165, titled the “Medical Good Faith Provisions Act,” requires that “upon the request of [either] a patient or resident or a prospective patient or resident, a health facility . . . shall disclose in writing any policies related to . . . the services a patient or resident may receive for the use of life-sustaining treatment or denial of non-beneficial treatment . . . .” The bill is now pending before the Michigan House Committee on Health Policy.
Michigan legislators determined that when a physician or hospital decides that treatment is useless to pursue, the family will usually seek care from someone or somewhere else. That is what Faith’s parents did. They transferred Faith to the University of Michigan C.S. Mott Children’s Hospital. The point of the legislation is to save these families and patients’ time, money, and heartache by being told upfront about a facility’s medical futility policy.
Given the relative vulnerability of patients and families, this transparency is a good idea. Indeed, it is already required of virtually every hospital in the United States. Consequently, the Michigan legislation, and similar legislation recently introduced in Minnesota, is arguably unnecessary and superfluous.
The 1991 Patient Self Determination Act requires that healthcare facilities “provide written information” to all admitted patients concerning “the written policies of the provider or organization respecting the implementation of . . . an individual’s rights . . . to make decisions concerning such medical care.” The same requirement is included in CMS regulations known as Medicare Conditions of Participation.
If there were any doubt that the PSDA requires hospitals to disclose their futility policies, a recent federal hospital inspection report dispels that doubt. In January 2012, clinicians at Milwaukee’s Froedtert Hospital had an actively dying patient who had 21 hospitalizations in the past year and had received 20 units of blood in the past month. Clinicians concluded that this patient had no capacity to benefit either from nearly daily transfusions or from being a full code. But the family would not consent to the proposed treatment plan. So, pursuant to the institution’s futility policy, clinicians wrote a DNR order over the objections of the patient’s family. Surveyors found that Froedtert violated the patient’s rights under the PSDA because the “hospital failed to notify patient of the hospital’s Medical Futility Policy prior to implementing the policy.”
The PSDA does not restrict a hospital’s ability to adopt or implement a medical futility policy. Neither does the Michigan legislation. Both merely require the disclosure of the policy. This is a small burden that produces a significant benefit. Mandated transparency will bolster the legitimacy and fairness of medical futility policies. And if the PSDA were being more vigorously enforced, there would be no need for Michigan and Minnesota to consider imposing an identical legal duty under state law.