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Attending Death With Dignity
PREFACE: At the end of an illness or in old age, dying without pain at a time of our choosing seems like an entitlement to many of us, especially baby boomers used to controlling key aspects of our lives. Health directives, living wills, and medical ethicists to help mediate between patients’ needs and institutional exigencies are mechanisms at our disposal to help ensure that we die a "good" death when the time comes. Yet such deaths are by no means guaranteed. It is not unusual for institutions and providers to lack the skills, systemic support, and comfort level—even when legal backup exists—needed to deliver the kind of end-of-life care many of us say we will want. Sharon LaDuke, a nurse who in the 1990s administered pain relief conforming to a patient’s and family’s wishes, recounts the trauma of facing criminal charges for what she believes was appropriate care delivery. Physician Neil Calman encountered what he found to be a moral dilemma: wanting to respond to an elderly woman requesting that he help her die but being legally constrained from acceding to her wishes. Despite the increase in pain management and end-of-life training in nursing and medical schools, these two stories show the difficulty providers and patients can still find when dealing with terminal events.
Her name was Willie D. Obisky. The widowed matriarch of a community-oriented family, she had been a wife, mother, Sunday school teacher, volunteer, and neighbor. For many years she and her husband had owned and operated The Surprise, a department store in our small rural town. As a child, I had been fascinated by the pneumatic tubes that whisked messages from one part of the large store to the other. Willie once had been beautiful. Now in her eighties, her face reshaped by years of steroid use to control her emphysema, she was "dying by inches," as her son put it, and had been for months before landing in our hospital for the last time. In the emergency department (ED), lung failure had raised the carbon dioxide level in her blood so high that she did not have the mental capacity to make her own health care decisions. Anticipating this day, she had named her friend Mary, a retired nurse, as her health care agent. She had discussed her wishes with Mary, filled out an advance directive, and provided a copy to the hospital. But when Mary told the ED staff that Willie did not want to go on a ventilator and had completed paperwork to that end, the hospital could not locate the document. And Willie had neglected to give Mary a copy. Willie ended up on the ventilator. Often when patients go on the ventilator, they can come off again and survive after the reversible elements of their illness are treated. But after a week it became clear that Willie’s ailments were not reversible. Willie was a strong and proud woman whose quality of life had been poor for some time. She had always said that she did not want to live on a machine, and her loved ones supported her wishes. After multiple discussions among her health care agent, her family, and the physician and nurses, the decision was made to have her breathing tube removed. Her family probably thought she would die right away, but she did not. Her relief at being off the breathing machine, which was replaced by an oxygen mask, was soon followed by increasing dyspnea—a relentness, suffocating shortness of breath. Not like the kind you get from running up flights of stairs, more like the panic you felt as a kid when your big brother held you underwater and you struggled to break free. Oxygen was being piped into Willie through a mask, but her lungs had failed and she could not use the air. Twenty-plus years of nursing experience has taught me that dyspnea at the end of life is far more likely than pain.
Both Willie’s family and health care team had anticipated this problem, so the physician had written orders for analgesia and sedation. These drugs reduce breathing difficulties as well as the patient’s awareness of them. Willie was to receive a continuous, pump-controlled intravenous drip of a morphine-like drug called Fentanyl and intermittent doses of Versed, a sedative drug. At first these orders were adequate. But as the hours passed and Willie began to tire from the effort of breathing, her dyspnea worsened. Despite the physician’s promise to her three children that their mother would be kept comfortable, she was not. By the time I took over Willie’s care, she had been off the ventilator for a day. Every breath was now a struggle, and her gray face was contorted in a grimace. Her exhaustion and anxiety were preventing her and her frantic family from using the time left to prepare for their final parting. When I informed the physician that the present orders for Fentanyl and Versed were not controlling Willie’s dyspnea, he increased the rate of the continuous infusion and wrote other orders that would give me the tools I needed to keep her comfortable. The new doses, however, were scary to me. Even though I knew that the only thing we could now do for Willie was to make her comfortable, I had never given anyone such big doses at such short intervals. I was, after all, a critical care nurse—skilled in preventing deterioration and restoring normal functioning in a clinical setting focused on life-sustaining therapy. I was trained for something entirely different from what was now needed. However, I had recently been studying the care of the dying, particularly patients removed from the ventilator, so I knew that the new orders and plan of care were medically appropriate. I administered the medications as ordered. Willie stopped trying to push the oxygen mask away, sank back into the bed, relaxed her furrowed brow, and stopped gasping for breath. Family members then took turns holding her hand, telling her how much she meant to them, and saying goodbye. They recalled old memories and recited prayers. Since I was a longtime lead soprano in my church choir—the same church as Willie’s, although I hadn’t known her personally—the family asked me to sing "Amazing Grace" at her bedside, which I did. Within a few hours Willie died peacefully, her family full of gratitude. Willie might have been at peace, but I wasn’t. Despite my belief that the care that had been provided was appropriate, I had stepped outside my moral comfort zone into unknown territory. I had been driven by Willie’s and her family’s needs but had given no thought to how I might feel about being the last person to medicate a dying patient. When Willie’s suffering was over, the family home, and the documentation completed, I was alone with my thoughts and began to question myself. It is widely known and well documented that nurses and physicians can feel guilt after ordering or administering analgesics and sedatives to people who are dying. That’s because these medications have a "double effect": As they ease or end the symptoms associated with dying, they also can potentially cause vital signs to deteriorate—in essence, hastening death. Many clinicians have trouble on a moral level distinguishing between administering medications that might hasten death—an act that is required if the dying are to receive appropriate care—and giving drugs in order to hasten death, which is euthanasia. So I was uncomfortable, and I’m not the kind of person who keeps things to myself. Over several days I told a few key people how I felt about this event, using the word euthanasia each time. My nurse colleague nodded sympathetically. My minister figured I was just grieving. A physician colleague (not the patient’s doctor) said, "That’s what we do. Forget about it." The nurse administrator, on the other hand, replied, "Euthanasia is against the law in this state."
You’d think that last comment would have told me right then and there that I had to explain that my using the "E" word was emotional hyperbole. But I had a good working relationship with this administrator, and she had always been very supportive. I thought she would mull it over and that we would have more discussions about not only this patient, but the hospital’s end-of-life care generally. But she did not understand. She felt obligated to convey the discussion to the risk manager, and an investigation was launched. When I requested that the case be brought before the hospital’s ethics committee, an administrator informed me that "euthanasia is not an ethical issue." Shocked into silence, I didn’t have the wits about me to point out that the committee would help clarify that what had happened was not euthanasia. One could argue that if I had kept my mouth shut in the first place, nothing would have happened. But ill-advised words cannot justify the subsequent actions of hospital officials. Although neither the internal nor external peer review subsequently performed found fault with my care, the hospital reported the incident to the state department of health. The investigation then conducted by that department resulted in multiple citations against the hospital for failure to address the needs of the terminally ill and one against the physician, but none against me. Nevertheless, the hospital referred the matter to the state board of nursing and the county district attorney. A few days after I met with the risk manager, the hospital placed me on administrative leave. I was paralyzed by fear and depression. I did my grocery shopping at 3 a.m. so that I wouldn’t have to face anyone. But I also began to read everything I could get my hands on about end-of-life care. The more I read, the more I realized that I had done nothing wrong. In fact, I had done nearly everything right. My fighting spirit returned, assisted by a well-placed kick in the rear from my husband and the Dobiskys’ outrage at the hospital’s actions. I hired two very competent attorneys to represent me in the two different aspects of the case—criminal and professional (license-related). Not many nurses have the financial resources to do that; I was lucky. After some six months of leave, the hospital offered me the opportunity to resign. Against my attorney’s advice, I declined and was fired, as expected. What I didn’t expect was that the hospital’s lawyer would state in writing that I was fired for committing euthanasia, or that the hospital’s CEO would allegedly refer to me as "Nurse Kevorkian" at a public gathering. The disrespect and arrogance of these officials was galvanizing. After hiring a third lawyer, I filed two lawsuits against hospital leaders: one related to the termination of employment on a false premise, the other for slander and other alleged wrongdoings. The Dobisky family also filed suit, including among the defendants a nurse who had allegedly failed to provide adequate relief of discomfort for their mother. Now the hospital had one nurse facing criminal charges because she medicated a patient, and one facing a malpractice suit because he didn’t.
With the filing of the civil suits, the story broke in the local papers. Shortly after that, the district attorney closed the investigation into Willie’s death for lack of evidence. The threat of state troopers showing up at my house with handcuffs was over. Now I had to deal "only" with the professional disciplinary and civil aspects of this three-horned dilemma. I live in an at-will employment state, and in due time the courts found that without an employment contract I could be fired for any reason, even if the reason was false. That left me with the lawsuit for slander. As you might expect, this suit was not quickly resolved. The three years between the public disclosure of the accusation and the settlement of the lawsuit were not easy for me and my family, the Dobisky family, or the hospital and its employees. But I found support everywhere I went, from the administrative nurse at the nearby hospital that hired me as a supervisor in spite of everything, to nurse colleagues who lobbied elected representatives and other authorities on my behalf, to the state nurses association, which saw in my case the practice implications for all nurses who are caring for the dying. My church, the community, the local media, and even some independent-minded hospital board members also supported me. The hospital did not fare as well. Headlines related to the case appeared with each new legal development. For two years it seemed that not a Sunday went by without at least one letter to the editor disparaging hospital leadership and its choice of "big city" legal representation. Board members confided that the hospital was losing its donor base. Pressure mounted to settle the case. Several developments finally made that possible. First, the state board of nursing did not find me guilty of professional misconduct. Second, two of the three administrators involved in my case had left the hospital, and the third had been reassigned. Third, at the suggestion of an influential attorney who came to my aid pro bono, I directly contacted the president of the hospital’s board and suggested that we bypass our lawyers and see if we could negotiate a settlement. I had never been looking for anything more than re-employment and reimbursement of legal fees and lost wages, and the Dobisky family had pledged to drop their own lawsuit if mine was settled. So we were able to come to an agreement in short order. I’ve been back at the hospital for almost six years now. It was a pleasure to hear a key physician refer to what happened as the darkest chapter in the hospital’s history and to say that the only thing I did wrong was to be ten years ahead of everybody else. It was a long battle, one that most nurses would not have had the resources to fight. It was a battle I should not have had to engage in.
Unfortunately, the end-of-life care war is far from over. Much more has been done to educate providers in pain management since Willie’s death in 1995. For instance, many nursing and medical colleges have integrated end-of-life care into their curricula. But despite a national push for such training, not all clinicians are competent in the management of the dying, know how to switch their focus from quantity to quality of life, or have the interpersonal skills to discuss such matters with patients and their families. Physicians underprescribe and nurses underadminister analgesics and sedatives, giving doses that make themselves, not the patient, comfortable. Evidence abounds in the health care literature that lots of doctors and nurses feel the same ambivalence I did. Yet end-of-life experts often are not brought in to assist with care until hours before death occurs, if at all. The dying are kept in the intensive care unit despite research-based evidence that even well-endowed university hospitals have been unable to ensure that patients in intensive care die comfortably. If I hadn’t asserted myself about Willie’s need for more aggressive pain management, and been willing to personally provide it, she would have died exactly the kind of death that she and her family had sought to avoid, the kind that still takes place every day in hospitals across the country. Government and hospital policies create risk for anyone prescribing and administering controlled substances. Legal systems tend to favor parties with levels of economic resources and expert legal representation typically not available to nurses. Ironically, while professional boards focus resources on the criminality of overprescribing, civil courts award damages to survivors for inadequately treated pain. "Angels of death"—nurses who have taken upon themselves to decide when patients should die—make headline news every few years, while angels of mercy struggle to carry out what the U.S. Supreme Court declared in 1997 to be the right of every citizen: effective palliative care, regardless of whether that care hastens death. As Frank Dobisky, Willie’s surviving son, told me, "Nurses should never have to be put in the position where they feel guilty for doing their job." Clearer, more consistent rules and regulations at state and institutional levels, together with stronger protections and support for physicians who order and nurses who administer end-of-life pain management, would help ensure that clinicians don’t have to second-guess themselves when a patient like Willie asks for effective pain alleviation. Someday each and every one of us could be in Willie’s position. As patients we will want our bedside nurses and physicians to have the support they need to best meet our needs for a comfortable and dignified death.
Sharon LaDuke (ladukes{at}northweb.com) has been a registered nurse for more than twenty years, working in acute care, education, human resources, and information management. She is the manager of a medical-surgical unit in a rural community hospital and writes about nurses’ experiences with the legal system.
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