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When Providers and Patient Families Disagree on End of Life Care

by Attorney Frank E. Reardon

February 1998

In the 1970s, families often confronted a medical profession that was unwilling to stop pursuing all medical treatments at their disposal. Court cases at that time usually involved a family's plea to let their loved ones die with peace and dignity, free of machines that would sustain a fading life. Today, the opposite trend is emerging. Health care professionals are becoming reluctant to offer all forms of treatment when to do so holds no hope of cure, but only serves to prolong the dying process. Usually, these impasses are resolved through an ongoing process of dialogue between the health care providers and the family. However, in some situations where a family insists that the treatment be rendered, these physicians are refusing, recognizing that their first and ultimate duty is to the patient's best interests, not to the family.


In the 1996 case of Gilgunn v. Massachusetts General Hospital, a Massachusetts jury found in favor of two physicians who had discontinued ventilator support for an elderly, critically ill patient. The family had demanded that their mother be provided with all possible treatment while in the ICU, despite her extremely poor prognosis. Numerous attempts to communicate with the family and to help them comprehend the dire medical situation of their mother were unsuccessful and the ventilator was removed. The patient died and the family sued, alleging that the doctor's decision to discontinue treatment had negligently and intentionally caused them to suffer emotional distress. However, after a two-week trial, the fourteen member jury found that the doctors' treatment decisions were in accord with accepted standards of medical practice, even if the patient would have demanded further treatment.


Now a Milwaukee jury has decided a case where parents alleged that discontinuation of resuscitative efforts for a newborn caused the child serious neurological deficits. Anthony MacDonald, et al v. St. Joseph's Hospital, et al involved the birth of Anthony MacDonald, now a severely retarded eight-year-old. In 1989, Anthony's mother had been rushed from Great Lakes Naval Hospital to St. Joseph's Hospital where, at twenty-three and one-half weeks gestation, she gave birth to Anthony. A sixty-eight gram infant, Anthony was described as being small enough to fit in the palm of your hand with skin like wet tissue paper. After approximately seventeen minutes of attempting resuscitation with 100 percent oxygen and being unable to get the heart rate above fifty to sixty beats per minute, the obstetrician informed the parents that the child would not survive. The child was expected to pass away during the next minutes to hours, and the parents were taken to a room to be alone with the newborn. Incredibly, after being in the room for some time, Anthony spontaneously cried out and was rushed to the neonatal intensive care unit. He survived but with severe neurological deficits.


In their lawsuit, the parents maintained that the obstetrician failed to take appropriate steps at providing their child with oxygen in the minutes following his birth. They alleged that this failure led to oxygen deprivation resulting in neurological damage. Experts for the doctor disagreed, however, testifying that such efforts were not successful in infants as premature as Anthony. Further, these experts testified that seeking the consent of the parents to discontinue resuscitative efforts was not the standard of practice under these circumstances. The jury agreed with these opinions and found for the defendant physicians.


Naturally, physicians ignore a family's request at their own peril. The family can later assert that the action taken was not consistent with accepted standards of intensive care medicine and therefore, was negligent. So decisions of this nature will only be made in the clearest of circumstances; in light of a family's most extraordinary demands; and only after extensive attempts to reach accord with the family have failed. Prior to taking such steps, a physician should consult other members of the health care team to ensure that there is agreement about the treatments that will or will not be pursued. If disagreement with the family is intractable, hospitals should have procedures for health care professionals to gain the advice of professionals not directly involved in the patient's care. Perhaps another physician at the hospital could help diffuse the situation with the family or even assume responsibility for the care to be provided. After such consultations, if all providers agree that treatment should be stopped, then the  possibility of transfer to another facility should be suggested to the family. Hospital administration should be directly involved and usually hospital legal counsel will be consulted to determine if judicial involvement is necessary. Finally, hospitals should have in place formal ethics committees that can advise both the health care team and the family about how these decisions are being made and what the appropriate decision-making parameters are.


If a suit should be brought, the jury will closely evaluate the integrity and adherence to practice standards. The greatest concern of the jury and society is to avoid a health care professional making subjective decisions that should be left within the patient's domain. In both of these cases, the physicians asserted that the patient would not benefit from the treatment being requested by the families. They argued that the provision of such treatment would not have constituted good or acceptable medical treatment.


These two juries sided with the physicians, but there is no assurance that all juries will do the same. The cases did not lead to well-crafted appeals-level decisions to guide health care providers. The Risk Management Foundation and other organizations are sponsoring research and work groups to examine end-of-life issues and develop strategies to help providers respond appropriately in these situations.