Annas GJ. “Culture of Life” politics at the bedside: the case of Terri Schiavo. N Engl J Med 2005; 352: 1710-1715.

I was in India during the final phase of the Terri Schiavo case and was surprised at the media attention the case received. The news media failed to address the relevance to India as much as to US. In the three months since her death, much has been written about the issues.

“Culture of life”

American physicians, bioethicists and lawyers thought that the law concerning termination of life-support was well settled after the Cruzan judgement in 1990. The religious right, pro-life groups have characterised the liberal movements (pro-abortion, the right to terminate life-support, physician-assisted suicide, etc.) as a “culture of death”. According to them, only God can take away life. It follows then that, for the first time in its history, the US Congresson Sunday, March 20, 2005, passed emergencylegislation aimed at prolonging the life of Terri Schiavo.

The case of Karen Quinlan

The legal history of the law regarding termination of life support begins in 1976 when Karen Quinlan’s parents asked a judge to discontinuethe use of a ventilator in their daughter, who was in a persistentvegetative state. Ms Quinlan’s physicians, afraid of a murder charge, had refused the parent’s request. The New Jersey Supreme Court ruled thatcompetent persons have a right to refuse life-sustaining treatmentand that this right is not lost when a person becomesincompetent. After a hospitalethics committee confirms that there is “no reasonable possibility ofa patient returning to a cognitive, sapient state”, life-sustainingtreatment can be stopped.

This encouraged all states to enact “living will” legislationto provide legal immunity to physicians honouring patients’written “advance directives” specifying how they would wantto be treated if they ever became incompetent; and it encouragedhospitals to establish ethics committees that could attemptto resolve disputes without going to court.

The case of Nancy Cruzan

The New Jersey SupremeCourt ruling applied only to New Jersey. In deciding the Nancy Cruzan case in 1990, the US Supreme Court ruling became applicable throughout the country. Nancy Cruzan was a young woman ina persistent vegetative state who required tube feedings tosustain life. The Missouri Supreme Court had ruled thatthe tube feeding could be discontinued on the basis of Nancy’sright of self-determination, but that only Nancy herself shouldbe able to make this decision. Since she could not do so, tubefeeding could be stopped only if those speaking for her, includingher parents, could produce substantial evidence thatshe would refuse tube feeding if she could speak for herself.

The US Supreme Court, in a five-to-four decision, agreed,saying that the state of Missouri had the authority to adoptthis high standard of evidence because of the irreversibility of the outcome.

Supreme Court Justice Sandra Day O’Connor recognised that young people do not generally put explicit treatment instructionsin writing. She suggested that had Cruzan simply said somethinglike “If I’m not able to make medical treatment decisions myself,I want my mother to make them,” such a statement should be aconstitutionally protected delegation of the authority to decideon her treatment.

The Cruzan case encouraged peopleto assign a power of attorney designatingsomeone (a health care proxy)to make decisions for them if they became incapacitated. In the absence of a health care proxy, most states grant decision-making authority to a close relative, usually the spouse.

The Schiavo case in the courts

Terri Schiavo had a cardiac arrest in 1990 when she was27 years old. She lived in a persistentvegetative state, nourished and hydrated through tubes. There was no living will nor had she designated a health care proxy. In 1998, Michael Schiavo, her husband, petitioned a state court to discontinue tubefeedings. Her natal family wanted to continue life support. Ajudge accepted the medical diagnosis of persistent vegetative stateand concurred with the husband that, if she could make her own decision, she would chooseto discontinue life-prolonging procedures.

Ms Schiavo’s parents were permitted to challenge the court findings on thebasis of a claim of a new treatment they believedmight restore cognitive function. Five physicians were askedto examine Ms Schiavo — two chosen by the husband, twoby the parents, and one by the court. On the basis of the majority’s opinion, the trial judge ruledthat Terri Schiavo was in a persistentvegetative state. The appeals court affirmed the decision. The Supreme Court of Florida refused to hear an appeal.

The parents, with the supportof conservative religious organisations, approached the state legislature. The legislature passed “Terri’s Law,” granting Governor Bush theauthority to order the feeding tube reinserted, and he did so.

The constitutionality of this law was immediately challenged. The Florida Supreme Court ruled that thelaw was unconstitutional because it violated the separationof powers that no branch of government may encroach on the constitutional powers of another, and nobranch may delegate to another its constitutionally assignedpower.

In January 2005, the US Supreme Court refused to hear an appealby Governor Bush. Thereafter, the trial court judgeordered that the feeding tube be removed at 1 pm,Friday, March 18, 2005.

US Congress at the bedside

Under pressure from religious conservatives, the US Congress convened in an emergency session and passed a bill, “For the reliefof the parents of Theresa Marie Schiavo”on March 21. The new law provided that “the US DistrictCourt for the Middle District of Florida shall have jurisdiction”to hear a suit “for the alleged violation of any right of TheresaMarie Schiavo under the Constitution or laws of the United Statesrelating to the withholding or withdrawal of food, fluids, ormedical treatment necessary to sustain her life.” The law gave the parents a legal standing to file a suit and instructed the federal court to ignore all previous legal proceedings.

The following day, the US District Court Judge issued a careful opinion denying the request of the parentsfor a temporary restraining order concluding that the parentshad failed to demonstrate “a substantial likelihood of successon the merits” of the case. The decision was upheld on appeal.

The case ofTerri Schiavo resulted in no changes in the law, nor were anygood arguments made that legal changes were necessary.

Comments

End-of-life decisions in India are compromised by a lack of a legal framework, social customs and complex family structure and interactions.

Increasingly, patients in India are dying in hospitals. Doctors in India’s ICUs, when dealing with patients on ventilators with a terminal incurable disease, are compelled to continue futile treatment, as there is no legal framework to discontinue life support (1). Families of such patients are left to cope with both the emotional trauma of loss as well as financial stress of heavy medical bills.

Even with a legal framework in place, effective implementation of advance directives and health care proxy need open discussion of end-of-life care within the family. This is not a subject most people want to talk about. In its absence, there is greater chance of disagreement in extended families. In absence of a health care proxy, by social custom, a senior male member of the family acts as decision maker. Can he really reflect the interests and wishes of the patient?

In the US, while the Terri Schiavo case may not have established any new legal precedents, the case has raised the issue once again and many institutions, states, and people are paying more attention to this area. As Quill (2) says, “the … case…raises …questions about how to define family and how to proceed if membersof the immediate family are not in agreement.” How can one expect a judge to determine which person in the family has the right to make decisions on behalf of the patient? (3)

de Boufort (4), in describing end-of-life decision making in the Netherlands, states that Dutch society with a “…reputation as iconoclasts with respect to end-of-life decision making” has dealt with similar cases without the extreme politicisation seen in the Schiavo case. However, as Quill (2) and Bloche (5) point out, even in the US, it is very rare for a court to get involved in end-of-life care.

So what do we learn from the sad case of Terry Schivao?

For all the reasons Pandya (1) enumerates, India must enact laws to make the living will a valid legal document. It is important for everyone to designate a health care proxy. We must openly discuss our choices for end-of-life care with our loved ones. When called upon to act as proxies, we must remember that it is the patient’s likely choice that we have to express, not our own wishes (2).