Working with Seniors: Health, Financial, and Social Issues

Chapter 14: End-of-Life Planning

In the early morning hours of January 11, 1983, 25-year-old Nancy Cruzan was driving on a dimly lit road in Carthage, Missouri. No one saw the accident that night but her car was found, flipped over, almost 200 yards from the road. The impact threw Cruzan out of her vehicle some 35 feet, and she lay facedown on the ground.

Nancy Beth Cruzan

Daughter-Sister-Aunt

Born July 20, 1957

Departed Jan. 11, 1983

At Peace Dec. 26, 1990

Inscription on Nancy Cruzan’s Headstone

In his book Long Goodbye: The Deaths of Nancy Cruzan (2002), William Colby relates the progress of events: A passerby called in an emergency, and a highway patrol officer arrived on the scene. In examining Cruzan’s body, he found no pulse or respiration and believed she was dead. He advised the Emergency Medical Services (EMS) technicians of this when they arrived. Nonetheless, the paramedics initiated Cardio Pulmonary Resuscitation (CPR) on the apparently lifeless body. EMS protocols and state laws dictate that the technicians resuscitate every patient whose heart or breathing stops, unless there is an out of hospital Do Not Resuscitate (DNR) order. The paramedics therefore, intubated Cruzan’s lungs to provide artificial respiration, inserted an IV, connected a heart monitor, suctioned her lungs of mucus and blood, and began chest compressions. Even though she was found lying on the ground, apparently deprived of oxygen for 12 minutes or more, Nancy Cruzan’s body responded to the paramedics’ efforts, and she began breathing on her own.

The paramedics felt their efforts were successful and that the victim’s rapid recovery was “unusual.” Nancy Cruzan’s body did recover from her many injuries, but, deprived of oxygen for more than six minutes (considered the point at which permanent brain damage occurs [Colby]), she never awoke from an unconscious condition called a persistent vegetative state. Her lower brain (the brain stem, which controls breathing and circulation) functioned, but her oxygen-starved upper brain cells (the cerebral cortex, the thinking and awareness part of the brain) had, in her doctor’s words, “liquefied.” Over time, Nancy Cruzan’s body began to deteriorate: her arms and legs drew in, her fingers turned up, and her toes pointed down. She could not swallow or eat, so a feeding tube was inserted in her stomach for food and water, and she was incontinent and had to wear diapers. She did not respond to stimuli or recognize her family, and diagnostic tests, such as electroencephalograms (EEGs) detected no brain waves.

Life-sustaining technology brought Nancy Cruzan back to life and prolonged her marginal existence. However, she lived afterward as a being without recognition, thinking, or feeling. To her family it was not a miracle, but rather a nightmare.

After three traumatic years, they requested the Missouri Rehabilitation Center (a state hospital) to remove her feeding tube. This was not a request for assisted suicide (a procedure recognized only by the state of Oregon). Instead it was a request to withdraw the medical treatment of food and water (nutrition and hydration) via feeding tube. Without hydration, Nancy Cruzan would die, and although it sounds inhumane, a neurologist who treated her testified that, “In a vegetative state, the brain doesn’t feel pain” (Colby). The family believed that if Nancy Cruzan could have decided, she would have rejected her feeding tube. She would not have wanted to live her life as a vegetable.

Often, life and death issues like these are negotiated at the bedside, between the doctor and the family. However, life and law became complicated for the Cruzan family because the state of Missouri objected to their request to remove the feeding tube, leading to a four-year court battle. After years of weekly visits to his hospitalized daughter, Cruzan’s anguished father, Joe Cruzan, appealed to the television cameras: “What’s the purpose in this?...Our Nancy died that [January] night. We’ve got her body left, but she has no dignity...” (Frontline, 1992). The Cruzan case went all the way to the U.S. Supreme Court and back to Missouri’s courts before a doctor finally removed her feeding tube. In the eyes of her family, almost seven years passed between that January night in 1983—when Nancy Cruzan departed life—and when she was finally at peace in 1990.

Introduction

Nancy Cruzan did not make any end-of-life plans and did not prepare an advance directive, a document naming a substitute decision-maker and identifying desired medical treatments. Her story illustrates how important it is for every person to preplan and complete such a document, a concept recognized by state laws and supported by most Americans. Survey research indicates that, in the abstract, a majority of Americans prefer death to living hooked up to a machine. Further, they support the concept of an individual’s right to die (Kugiya, 2003). However, only an estimated 18 percent of the adult population has completed one or more elements of an advance directive (Fagerlin, 2002).

Most people don’t want to think about death, much less talk about it, unless the end is near. They may fear a serious illness, but they do not believe they are vulnerable (Fagerlin). Nancy Cruzan, like many other adults, may not have even been aware of advanced directives and their value.

To terminate life support is always a difficult decision, particularly when the patient is a loved spouse, parent, or child. Such decisions become more difficult when the loved one has made no formal indication of their wishes in an advance directive or even simple conversations. It is important for seniors to discuss their treatment wishes with their doctors, family, and friends so that all their loved ones are fully aware of their values, desired treatments, and choices. In addition, it is equally important for seniors to discuss the health care wishes with people for whom they may be responsible for making end-of-life decisions.

In some cases, the absence of a written document spelling out an individual’s health care desires could pull the family member who decides to “pull the plug” into a spiral of traumatic grief and depression. After Nancy Cruzan was buried, her father entered a deep depression and eventually committed suicide. Dr. Erin Embry, a psychologist practicing in a New York hospital, described a similar situation involving a patient currently in psychotherapy. This patient advocated against intubating her 83-year-old mother, who was afflicted with multiple chronic conditions and had been hospitalized for respiratory failure. There was no advance directive rejecting ventilation, which meant the daughter was compelled to appear before the hospital’s ethics committee. The panel eventually agreed, and the tube was removed. While she knows intellectually she did what her mother would have wanted, the daughter feels responsible for her mother’s death. With an advance directive, the burden of deciding would not have fallen solely to the daughter.