Guest Editorial

BY HOWARD TUCH, MD, CMD

Enter, the Florida legislature and its bill to compel resumption of artificial hydration and nutrition for Terri Schiavo, a 39-year-old woman who, when the law was passed, had been in a persistent vegetative state (PVS) for 13 years. The bill, passed in October, authorized Gov. Jeb Bush to issue a one-time stay to prevent the withholding of nutrition and hydration from a patient if the following conditions were met:

• the patient has no written advance directives;
• the patient was found to be in a PVS;
• the patient has had nutrition and hydration withheld; and
• a member of the patient’s family has challenged the decision to withhold tube feeding.

The bill was designed to address Terri Schiavo’s situation. It was passed without any discussion, clinical input, or review of the nearly 10 years of existing court decisions, all siding with her husband in determining her desire not to live in a PVS.

The Florida Medical Directors Association (FMDA) has adopted a position that this bill was a direct legislative intrusion into the private affairs of a patient and family. We believe that it violates existing Florida statutes, years of court decisions, accepted recommendations of two state panels on end-of-life care, and decades of consensus in medical ethics regarding a patient’s right to refuse unwanted medical intervention. Regardless of how one feels about the decision in the Schiavo case-and there is plenty of room for disagreement-the Florida law sets a dangerous precedent and should be overturned.

The good news is that the Schiavo case has revived public interest in living wills. The bad news is that, after a decade of advocacy, only about 25% of Americans have completed a living will. Moreover, even when completed, the living will may not be specific enough to guide complex end-of-life decisions. Who knows what we will want in a medical crisis years or even decades after completing our living wills?

Physicians have long advocated therefore that in addition to a living will, one should designate a healthcare proxy or durable power of attorney in the event of incapacity. This should be someone who knows the patient and can advocate for him/her while sitting across the table from healthcare providers, and maybe even across from family members in conflict. The Florida law raises the possibility, however, that all family members, whether designated as decision makers or not, will have legal standing to object to, and maybe to sue over, critical end-of-life decisions.

One great concern that has been expressed regarding a particular consequence of the law (one, in fact, that is already happening) is that it will affect decisions beyond the narrow limits of the Schiavo case. For example, patients in end-stages of Alzheimer’s disease, strokes, and Parkinson’s disease frequently lose massive amounts of weight as death approaches. Their families are often confronted with decisions regarding tube feeding. Tube feeding in these patients, unlike in younger patients in PVS, has never been shown to prolong life, enhance comfort, or improve quality of life. It is ironic, then, that the law will likely have a greater effect on these nursing home residents than on the far smaller population of patients in PVS.

The actions of the Florida legislature have dramatically raised the anxiety of all involved in caring for dying patients. Advocates for patient autonomy and good end-of-life care should be concerned and should let their legislatures know how they feel. NH