Refusing Medical Treatment: Beyond the Advance Directive
by Lois Snyder, American College of Physicians, Philadelphia, PA
Another case in Florida is shining the spotlight on refusal of life-sustaining treatment. The family of Madeline Neumann, who died in 1995 at the age of 92, is now having its day in court, two years after the Terri Schiavo case captured the nation's attention. Granddaughter Linda Scheible brought negligence, breach of contract and battery claims in 1997 against Morse Geriatric Center and its medical director Dr. Jaimy Bensimon for, she says, disregarding Ms. Neumann's advance directive with instructions on refusing life-prolonging measures (Linda Scheible, administrator of the Estate of Madeline Neumann, deceased v. Joseph L. Morse Geriatric Center and Dr. Jaimy Bensimon; Circuit Court, Palm Beach County, Florida). Ms. Neumann had Alzheimer's disease and suffered from seizures.
Cancer had taken the lives of her husband and daughters, so Ms. Neumann had given thought to how she wanted to die. When she entered the nursing home still competent at age 89 in 1992, she completed a living will specifying that she wished to forgo life-prolonging care and declining cardiopulmonary resuscitation (CPR), tube feeding, surgery and respirators. She did, however, specify that she wanted antibiotics if necessary. She also appointed her granddaughter, Ms. Scheible, as her healthcare surrogate. However, there was no "do-not-resuscitate" (DNR) order written by a doctor in her medical record, so when she became unresponsive one night in 1995 and the medical director was not on-site at the nursing home, he instructed staff who had paged him to call paramedics. The paramedics performed CPR and intubation, and transported Ms. Neumann to a hospital. There, she was on life support for 3 days. Ms. Neumann died 4 days after life support was discontinued.
The nursing home and its medical director said they were aware of the advance directive, but given the emergency circumstances and the patient's history of seizures and desire for some care, such as antibiotics—and the absence of a DNR order in the chart— they determined that the patient should be evaluated. In most states, advance directives such as living wills become operable only when the patient becomes terminally ill or is in a state of permanent unconsciousness. Also, without a DNR order—a doctor's order— Florida law requires emergency medical personnel to perform CPR.
One mechanism for others trying to plan for these issues might be the POLST (Physician Orders for Life-Sustaining Treatment) form, a brightly colored medical order form on life-sustaining treatment first developed in Oregon . More states are developing similar programs. POLST, as a physician's order, may or may not be used in conjunction with an advance directive completed by the patient. It is meant to be portable, going with the patient from one setting to another such as home or nursing home to hospital. In the early 1990's, a multi-disciplinary task force was convened in Oregon to explore how to prevent unwanted transfer and intensive medical interventions for those patients who did not desire them (and how to ensure those interventions for patients who did want them.) In conjunction with use of the form, the Oregon Board of Medical Examiners also redefined the scope of practice for EMTs and first responders to direct them to respect patient wishes for life-sustaining treatment and to comply with life-sustaining treatment orders executed by a physician, such as those recorded on a POLST document.
The groundbreaking Quinlan and Cruzan cases helped to establish the right to refuse life-sustaining treatment, including the right for incompetent patients. Since then, more patients are using advance care planning methods to express their healthcare wishes when they are no longer able to do so, although only 15% to 25% of adults have advance directives. In this Florida case, where advance care planning was done, wishes were still allegedly frustrated. Unaware of the need for a doctor's DNR order, family members felt their loved one's preferences — and rights — were violated. But clinicians feel like they are between a rock and a hard place. Commented James Nosich, medical director Bensimon's attorney, "If you call 911, you get sued. If you don't call, you get sued."
It seems as though the jury recognized the difficulties clinicians face, finding against the nursing home for failing to honor the advance directive — but not against the doctor. The judgment against the facility was for $150,000. Jurors said they felt that the nursing home lacked procedures for ensuring that patient wishes would be followed in the event the patient could no longer speak for him or herself.