When Is Medical Care "futile"? the Institutional Competence of the Medical Profession Regarding the Provision of Life-sustaining Medical Care

• Publication year: 2021
• Citation: Vol. 90

90 Nebraska L. Rev. 1. When Is Medical Care "Futile"? The Institutional Competence of the Medical Profession Regarding the Provision of Life-Sustaining Medical Care

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Meir Katz(fn*)

When Is Medical Care "Futile"? The Institutional Competence of the Medical Profession Regarding the Provision of Life-Sustaining Medical Care

TABLE OF CONTENTS

I. Narrative................................................................................................................................................................................2

II. Introduction..........................................................................................................................................................................4

III. A Sample of the Case and Statutory Law Regarding the Futility Movement...........................................................8
A. Early Pivotal Cases ...........................................................................................................................................................9
B. Rideout v. Hershey Medical Center and Claims for Emotional Distress.........................................11
C. Claims Under the Emergency Treatment and Active Labor Act (EMTALA).............................................................13
D. Futile Care for Infant Patients .........................................................................................................................................17
E. The Texas Advance Directives Act (TADA), a Robust Statutory Solution?.............................................................. 22
IV. On Institutional Competence, Bias, and Materialist Philosophy ............................................................................ 24
A. The False Presumption of "Futility"..................................................................................................................................27
B. Institutional Incompetence and Bias in the Medical Profession ...............................................................................31
C. Non-Materialist Considerations ......................................................................................................................................39

V. Rebuttal and Response.....................................................................................................................................................49
. Human Suffering for a Purpose and with Consent is Not Torture................................................................................50
B. 'Physician Autonomy' Does Not Define the Scope of a Physician's Legal Responsibilities................................54
C. The Allocation of Scarce Medical Resources................................................................................................................63

VI. Conclusion...........................................................................................................................................................................68

"We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life,(fn1) Liberty and the pursuit of Happiness."(fn2)

I. NARRATIVE

Moshe Schwab, an Orthodox Jew from Miami, and his family returned from a trip to Disney World on August 23, 2007.(fn3) After cleaning up from dinner, Moshe called his children to ask them to take their showers and get ready for bed.(fn4) His four-year-old daughter, Aliza, did not come.(fn5) Concerned, Moshe quickly went to look for her-starting with the swimming pool.(fn6) He found the life vest she wore the whole afternoon sitting beside the pool and then immediately spotted her lying on the bottom of the pool.(fn7) In a moment, "the laughing, running, [and] playful" daughter the Schwabs had known became something else; her heart stopped beating.(fn8) Medical personnel arrived quickly and successfully administered cardiopulmonary resuscitation (CPR), but Aliza never regained consciousness and remains on a respirator as she is no longer able to breathe independently.(fn9)

Eventually, Aliza's hospital determined that further medical care on her behalf was "unethical" and thereby decided to "pull the plug."(fn10) The Schwabs sought rabbinic authority to guide both their emotional

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response as well as to instruct them how to approach the hospital; they were told to fight the hospital, which they did.(fn11) Aliza's doctors objected, stating that they "saw no further value in continuing to keep ... Aliza alive, when her organs could benefit other children who were also in desperate need."(fn12) Accordingly, in disregard to the preferences and protests of the Schwab family, Aliza's doctors instructed her family to prepare themselves for the death of their daughter and to inform whomever they desired.(fn13) The Schwabs made many calls, not to make "final arrangements" but to ask total strangers who previously knew nothing of them, had never seen Aliza, and probably never would, to pray on her behalf that she might see another day.(fn14) Apparently, thousands of these strangers responded as e-mail requests for prayers on behalf of Aliza quickly circulated the globe.(fn15)

The hospital agreed not to unilaterally terminate Aliza's treatment, instead giving the Schawbs seven days to find a different care provider.(fn16) Eventually, the hospital agreed to abandon the seven-day requirement as well because Aliza's condition began to stabilize.(fn17) Her parents decided to care for Aliza at home and transformed a room in their house into a mini intensive care unit.(fn18) The hospital granted them some time to learn how to operate various pieces of complicated medical equipment.(fn19) Sadly, their opportunity to care for their daughter at home did not last long. Within days, Aliza had to return to the hospital (wisely, her parents took her to a different area hospital) with a "massive" infection.(fn20) Aliza returned home weeks later but could no longer move her hands and feet.(fn21) Despite Aliza's desperate and deteriorating

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state, her siblings continue to show her love and affection with zeal.(fn22) Her brothers and sisters run to her room upon returning from school to read to her, kiss her, tell her stories, and simply be her siblings.(fn23) And her parent's devotion to her care is heroic. For example, Aliza's parents significantly reduced their hours in their small business as part of an effort to devote much of their time and energy to Aliza's care.(fn24)

Why does the Schwab family continue to care for their daughter with such devotion? One can understand that they love their daughter, even given that she exists as a mere shadow of her former self, but it may be hard for some to understand how that love is capable of driving Aliza's parents and family to these dramatic (and expensive) measures. For the Schawbs, there was no question. While Aliza is not responsive and may not be physically aware of her surroundings, her parents believe that her soul is fully aware, and that belief drives them. Her soul knows "how much her parents love her and how hard they are trying to make her life as good as it can possibly be... . Although she is not awake, her neshama(fn25) knows everything."(fn26) For the Schwabs, this is not science fiction, nor is it theoretical; it is a belief that will govern their daily lives for the foreseeable future. As the reporter sent to observe the Schwabs prepared to take leave, Aliza's mother gave her the following revealing message: "We're happy that ... Aliza is here. Every day that she's here with us is a good day for us."(fn27)

II. INTRODUCTION

The year 1987 began a revolution in the medical community. At around that time, doctors and hospitals began working to establish a policy through which physicians would be able to withhold or withdraw medical treatment when a patient or surrogate requests specific treatment over the objections of the patient's physician.(fn28) Under these new policies, doctors would be able to override "patient auton-omy"(fn29) on the basis of their determination that further treatment is

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"futile," "inappropriate," "nonbeneficial," "ethically objectionable," or "not medically indicated."(fn30) These terms are all various ways of describing "medical futility." While there does not seem to be a consensus definition of futility, proponents of a robust "medical futility" doctrine all agree that when it can be determined that further aggressive medical care is of no benefit to the patient (perhaps because there is no statistical chance of recovery, perhaps because any recovery seen will be qualitatively negligible, perhaps because the harm likely to be caused to the patient by continued treatment outweighs any benefit to the patient) there is no obligation to provide that treatment.(fn31)

A study in the early 1990's illustrated the pervasiveness of the futility movement despite it being just a few years old. Dr. David A. Asch, Professor at the University of Pennsylvania, surveyed 879 doctors in intensive care units around the country and found that over 80% of responding doctors admitted to unilaterally withdrawing care that they considered futile without ever consulting family members regarding their intentions or offering them the opportunity to transfer the patient.(fn32) These families never knew that their loved ones lost their lives before...