A court case: "What we learn from Mrs. Elbaum?"
For sixty years, Mrs. Jean Elbaum was medically well. Then she suffered a stroke at her Long Island home. For long-term care, she was eventually transferred to Grace Plaza, a skilled nursing facility in Great Neck, New York. According to her husband and children, she had previously expressed her wish that if she were in a “vegetative like state,” she would not want to be kept alive by a ventilator like the celebrated legal case of Karen Ann Quinlan. She also voiced not wanting to be given antibiotics and tube-feeding like her mother who lingered on and died slowly from terminal cancer. After Mrs. Elbaum extracted promises from her husband and other family members to honor her wishes, the whole family was united in this commitment.
Many years later, however, they would need to testify to all these facts in court.
After Mrs. Elbaum arrived at the skilled nursing facility, her doctors gave her the diagnosis of Permanent Vegetative State. To fulfill his promise, her husband requested that her feeding tube be removed, but the administrator of the nursing home refused, even after all other family members were consistent in what became a desperate request. One month after her admission, an anguished Mr. Elbaum warned the nursing home administrator that he would refuse to pay for continuing treatment that his wife definitely did not want. When he asked permission to transfer his wife to another facility, the administrator refused again, explaining that he was not certain if Mr. Elbaum had the authority to be his wife’s spokesperson. Yet it was also likely that the administrator was afraid to allow the transfer since the patient would die given the husband’s clear intent to discontinue her tube feeding.
To honor his wife’s wishes, Mr. Elbaum was thus forced to file a lawsuit. [Elbaum v. Grace Plaza, 1989.]
Nearly three years after the first request to stop tube feeding, the court sided with the Elbaum family. It ruled that the presented evidence met New York’s standard of clear and convincing.
In a previous case, the court had ruled that the patient, Mary O’Connor, had NOT been sufficiently clear and convincing. Mrs. O’Connor had indicated that she did not want to be a burden to anyone by repeatedly stating that she would not want to be maintained by artificial means if she could no longer care for herself. Nevertheless, the court questioned whether her orally stated wishes were durable; that is, the judges wondered if this severely demented 77 year-old lady might now want to change her mind. Despite the fact that her dementia was progressive, for this unlikely possibility the court forced this woman to linger on for another ten months, when she finally died with a tube-feeding in place.
For Mrs. Elbaum, however, the court ordered the nursing home to permit her transfer to another facility where her wishes could be honored, or to her own home if no such facility could be found. The husband arranged for Jean Elbaum to be transferred to a hospice in New York, where finally, tube feeding was withdrawn. She died peacefully, a few days later.
After four more years of litigation, the highest appellate court in New York State ordered Mr. Elbaum to pay $100,000 for the medical treatment his wife had received for nearly three years, despite his protesting at the time that his wife did not want these treatments and his warning that he would not pay. The Court considered the documents Mr. Elbaum signed on his wife’s admission as his promise to pay for his wife’s care since he did not then indicate any limitations. Furthermore, they considered the nursing home to have acted properly when it insisted on a Court determination of Mrs. Elbaum’s wishes. Since Mrs. Elbaum had never executed a Living Will, the court stated it was impossible for the nursing home administrators to know with certainty what her wishes were. Similarly, since she had never executed a Durable Power of Attorney for Health Care, the court stated it was impossible for the nursing home administrators to know with certainty the identity of the person who she wanted to authorize to make her medical decisions. Thus it was necessary for the court to become involved, and the nursing home should not be held responsible for paying for the patient’s treatment during the time the Court decided what level of treatment she wanted and who should be her spokesperson.
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The story of Jean Elbaum and her family illustrates the importance of creating clearly and convincingly written documents. Prolonged litigation drains the family’s emotions and finances as it effectively denies the patient’s last wishes. We should not be too hasty to fault either Mrs. or Mr. Elbaum for not having an Advance Directive, however, as her stroke occurred in 1986 – prior to the U S Supreme Court’s landmark ruling on Nancy Cruzan and the federal Patient Self-Determination Act. Both occurred in 1990.
Two decades later, however, the Mr. and Mrs. Elbaum-type of scenario is unfortunately still too common. Challenges to honoring last wishes come from an even greater number of sources and are based on a wider range of motivations. Nursing homes profit more from tube-feeding than assisted feeding. Physicians worried about the risk of lawsuits from removing life-sustaining treatment may insist that the family of an incompetent patient ask the court for guidance. Doctors are still debating whether or not it is moral to inform patients about the option of Voluntary Refusal of Food and Fluid. Yet the physicians’ real motivation may be their own, not their patients’ religious beliefs. They may also fear that if they are sued, it will be from the surviving family members so they listen more to them than to the dying patient, which is usually easier. Family members who feel guilty about not paying enough attention to their dying relative often take a sudden and active, though sometimes misguided interest in prolonging their life. In effect, they follow this rule: “The farther away they lived in the past, the greater their interest in prolonging their dying relative’s future.”
In all these challenges, the worrisome theme that repeats is that others can wield power putting their preferences before those of the dying patient. Whether their intrusion of privacy is unconscious or well intended, what is at stake is the most important decision a person can make about his or her life. If people cannot trust others to honor their wishes to avoid prolonged suffering at the end of their lives, they may decide to end their lives prematurely and illegally.