Quinlan and Cruzan - Beyond the Symbols

Quinlan and Cruzan - Beyond the Symbols - Chapter 3 QUINLAN...

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Unformatted text preview: Chapter 3 QUINLAN and CRUZAN mmmmmm Beyond the Symbols Karen Ann Quinlan, Nancy Beth Cruzan, and Terri Marie Schiavo are iconic figures. Remarkably similar in appearance, familiar photographs show all three—young, white, twenty-something, pretty, dark-haired women—prior to the medical catastrophes that eventually claimed their lives. Each of these three women— and their families and caregivers — existed for a time within a vortex of public conflict, media attention, and legal battles over unavoidable decisions about the course of their medical treatment. In many respects, Ms. Quinlan, Ms. Cruzan, and Ms. Schiavo present iden- tical cases. All three shared the same diagnosis and prognosis che persistent vegetative state (PVS), the paradigmatic mental condition through which advo- cates, courts, and legislatures developed and challenged fundamental ethical, social, and legal principles. For all three, decisions concerning life-sustaining treatment would be made by family members without the benefit of specific advance directives. These three cases, however, are not entirely the same. The Quinlan family was the prototype for the idealized surrogate decisionmaker that forms the foundation for our current framework for end«of~life decisionmalcing. For Terri Schiavo, in contrast, the painful and destructive split among her family members m a scenario that perhaps was narrowly avoided in Nancy Cruzan’s case through divorce—challenged idealized notions of family that had been * Professor Emerita of Law and Health Care Ethics, Center for Health law Studies, Saint Louis University School of Law. Professor Johnson signed an amicus brief filed with the United States Supreme Court in support of the Cruzan family. Brief of Missouri Hospitals, Hospital Ethics Committees, Medical Schools, Hospital Chaplains, Hospice Organizations and Law Professors, Cruzan v. Director, Missouri Dept. of Health, 497 US 261 (1990) (No. 88-1503}, 1989 WL 1115257. I gratefully acknowledge the research assistance of Kelly Carroll, M.A., J.D./Ph.D. can- didate, Saint Louis University. ' 53 54 oethics: Cases in Context Health Law and Bi intuitively accepted. An unrelenting and star- so conveniently and in the courts and in the state and federal legislatures marked Terri Schiavo’s case. Mis- souri trial and appellate courts, in contrast, uniformly closed the door on challenges filed by stran- gers to the Cruzans, spared the difficulty of dealing with litigation by family members against one another. Finally, for Karen Quin- lan, the medical intervention targeted for withdrawal was the e dispute did not ventilator. Th include nutrition and hydration, which the family continued in m for nearly ten years after withdrawing the ventilator. For Nancy Cruzan and Terri Schiavo, however, nutrition and n. With permission of Mrs. Julia I hydration was the only form of ' an interven- tling legal battle some for Karen Ann Quinla Quinlan. ' ' ’ al, and religious tion that itself we significance. Some of these differ of-life decisionmalting, y. In this framewor s and remains loaded wi framework for end- ences reveal the fragility of the legal of highly individual- a framework that relies on a theory lll‘eS an inquiry into the individual k, each case reqt patient’s precise medical condition and her known or inferred desiresr—as those wishes are communicated by appointed or default sur- rogates. In each case, these surrogates are themselves subject to examination and challenge as to whether they are acting in good faith on the patient’s behalf. These stories, however, are not entirely about legal standards: ized inquir Though the stories played out in the court system, they are really about how decisions are made in - I '- " a democratic society ion of William Colby on our hardest ques- tions. . . . And the .1 l: , ' Nancy Beth Cruzan. With permiss on behalf of the Cruzan family. W in th th CE OI: M ca St. th N.- as p1 y( th 'th In th SL‘ ex til at th Chapter 3: Quinlan and Cruzan heart of the . . . story is about what happens to human beings who are caught in the middle of that decision making process.1 While Terri Schiavo’s tale is well known and weli documented, memories of Karen Quinlan and Nancy Cruzan have dimmed with the passage of time. It is in their narratives rather than in their iconography, however, that the notion that Terri Schiavo’s case defied the consensus devel- oped by In the Matter of Karen Quiirilrm2 and Cruzan v. Director, Missouri Department of Health3 can he tested with a deeper under- standing. This chapter begins by telling the stories of Karen Quinlan and Nancy Cruzan and their families as their journey led them into the public arena. It begins with their youthful experiences and walks through the catastrophic events and early treatment decisions, their medical diagnoses and prog« noses, how the parents reached the decision to withdraw life- ‘- _ . sustaining treatment, and the . _. .;‘ a; _ events that then triggered litiga— Terri Marie Schiauo. Used with permission of tion. As happened for the Quinlan Getty Images/Getty Images News. and Cruzan families, the focus of the chapter then widens to bring in the media forces and protests, the court decisions, and the role played in each case by thought leaders in the Catholic Church and medicine. Finally, the story centers again on the two families and the withdrawal of life-sustaining treatment, the deaths of their daughters, and the aftermath for the Quinlans and the Cruzans. A. Youth and Family Julia Quinlan, Karen’s mother, suffered three miscarriages and a stillborn child during the first years of her marriage to Joseph Quinlan, the childhood sweetheart she married after W’orld War H. Told by doctors that it would be impossible for Julia to hear a live child, Julia and Joe adopted their infant daughter in 1954 and named her Karen Ann.4 Shortly after bringing her home, the Quinlans rushed their new baby to the hospital, suffering from dys— entery. After three days, the doctor told them: “I can't give you any hope. I’m afraid the illness has gone too far.” Julia prayed for her child "harder than she had for anything else in her life.” Vt’hen they returned to the hospital after a church service, the same doctor told them, "I don’t understand it, but Karen has passed the crisis."5 56 Health Law and Bioethics: Cases in Context n was fixed by this memorable vivor and a fighter — their own she "walked away without a 3’ image of their daughter Kare The Quinlan incident; her family knew her ever after as a sur Irmed that image when little "miracle." Karen conf atch” from an accident in 1974 in which her little VW bug flew off the edge of the road into a ravine, totaling the car that Karen later rebuilt and put back into service.6 Like many patients in judicial cases concerning the discontinuation of life-sustaining treatment, Karen was described as vivacious and sociable, with a special enthusiasm for climbing, rimning, sports of all kinds, and her friends. According to Julia, Karen “was so full of life” and had a laugh that “was just contagious”? Karen’s resistance to her parents’ desire that she attend college after high school and her inéterest in working as a car mechanic marked her as a determined young woman. . Joe and Julia Quinlan were devoutly Catholic, and their three children were raised in the Catholic faith.9 Joe, who worked in the accounting department at Warner Lambert, was known as “a quiet man, gentle. carefully controlled; the kind of man people lean on.”10 Joe Quinlan took the public lead for his family in what was to come, just as Joe Cruzan would a decade later. Nancy Cruzan’s family was a “salt of the earth, God-fearing, blue-collar, southern Missouri family.”11 Nancy Cruzan, like Karen Quinlan, was known by her-family and friends as a vibrant and determined character. Her nieces described Aunt Nancy as “the greatest aunt anybody could ever have in the whole world” and as “ornery” and “finally.”12 Her father remembered that when he watched her perform as co-captain of the twirlers for the high school marching hand, his "eyes would fill up” and he “couldn’t hardly see through the camera.”13 Nancy was the firstborn and the “free spirit” of the three Cruzan girls. She “loved speed,” whether riding with her father on his motorcycle or driving her car on the two-lane country roads around the Cruzan home in little Carter- ville, Missouri, population 2000. Nancy, like Karen, did not always follow the path her parents would have her. She married Danny Hayes while a senior in high school, mistak- and later moved with him to Florida while he served in the Navy. Her first marriage ended in divorce three years later, and she moved back to her parents’ home — a twenty-year-old who loved to party. Nancy met Paul Davis in 1980, and they married in 1982 and moved to a small home on Krummel Nursery Road.14 Joe Cruzan did not approve of his daughter’s new husband. Like Joe Quin- lan, Joe Cruzan, a construction worker, was the man everyone relied on. His younger brother called him “The W’agonmaster” because of his role in planning and executing the Cruzans’ extended—family outings. Although Joe Cruzan spoke in measured tones, he was opinionated and engaged in active correspondence with politicians and newspapers concerning behavior he thought was wrong 5 According to daughter Christy, her father was a fixer and could fix 16 Joe Cruzan could not repair the devastation that befall his own either could Julia and Joe Quinlan. SCI‘ chosen for only believing that she was pregnant, heade d .1 anything. daughter, however, and n B. The Catastrophic Events and the Early Decisions t turned 21 and was living with friends in April, Karen Ann Quinlan had jus d the phone call that all parents of young adults 1975, when her parents receive Chapter 3; Quinlan and Cruzon dread—their daughter was in the emergency room of a local llospitai in dire condition. According to her friends, Karen had had no more than three gin and tonics at their party when she “passed out” and they put her to bed.” They knew that she had been on a “crash diet” to fit into a bikini and hadn’t eaten all day. ‘Nhen her friends checked on her later, though, she had stopped breathing for who knows how long. Karen was first admitted to Newton Memorial Hospital emergency room. A few days later she was transferred to St. Clara’s Hospitai, which had more sophisticated facilities and which the Quinlans loved because it was in that New Jersey hospital that their daughter had survived dysentery as an infant.18 For weeks, the Quinlans maintained hope of their daughter’s recovery, even as her body "folded itself into a tight little fetal figure” and her weight dropped from 120 pounds, to 90 pounds, and then to 70 pounds. By late June, Karen was immobile except for her head and her aimlessly darting eyes.19 Despite her condition, Joe Quinlan expected her to pull through as she had before: "I knew Karen — she’s such a determined, strong girl. If anyone could pull out of this, it’s Karen.”20 Nancy Cruzan’s family also received a call in the middle of the night that would “change their lives forever.”21 On January 11, 1983, Nancy Davis, nee Cruzan, was a 25-year-old newlywed, married nearly one year, when her husband received the call that his wife was being taken to Freeman Hospital with head injuries after a car accident. Nancy’s car had run off the road at a curve on Krummel Nursery Road. A neighbor heard a crash around 12:30 A.M. and discovered the car resting 011 its roof, with no sign of a driver inside. He later found Nancy lying “facedown and motionless on the hard grormd” where she had been thrown from the car.22 Some time later, police arrived on the scene; con— cluding that Nancy was dead, as she had no pulse and was not breathing, the officers made no effort to resuscitate her?3 Instead, police and neighbors continued to look for other passengers who might also have been thrown from the car, until the ambulance arrived and paramedics began efiorts to resuscitate Nancy]?1 Paul Davis called Nancy’s sister, Christy, at 2:25 A.M. to tell her the news, and Christy called her parents. They all rushed to Freeman Hospital to await Nancy’s arrival; however, the Cruzans didn’t recognize Nancy as she was carried through the emergency room but for her socks — special socks that Joyce had given each of her daughters for Christmas.25 Joe remembered that “when the nurse came out and said that she was going to be all right, Iturned . . . to Joyce and I said 'I feel like I can breathe again.”’26 Unforttmately, it turned out that “all right” wasn’t exactly accurate. Nancy’s husband Paul, and Joe and Joyce Cruzan when Paul wasn’t avail- able, consented to all interventions recommended by the doctors. These included a gastrostomy, a surgical procedure to insert a tube into Nancy’s stomach to deliver nutrition. Joyce later recalled that they signed anything that the hospital asked them to, often without reading the document: “When it’s just been three or four weeks after the accident, you think . . . that there’s a good chance she’s going to get better?” Joe said, “Iliad no idea i was signing away anyhody’s rights [when he permitted the gastrostomy] . Iwouid have signed anything. We were just waiting for Nancy to wake up."28 Christy recalls that the gastrostomy was to be “a bridge to allow Nan to recover. ‘N e had great hopes that she would be able to recover and return to consciousness.”29 57 58 Health Law and Bioethics: Cases in Context in February 1983, Brady Rehabilitation Center agreed to admit Nancy for intensive interventions, including attempts at spoon feeding, to try to stimulate her to consciousness. After four weeks with no change, the Center discharged her. Paul didn’t want his wife to be in a nursing home, or apparently at the Cruzans‘ home, and instead arranged to have her stay with his grandmother in Oronogo, Missouri. Paul’s family cared for Nancy there, in a tiny home without air conditioning throughout an intensely hot Missouri summer. After a brief hospitalization, Nancy was admitted to the Missouri Rehabilitation Center (MRO), a state facility in Mormt Vernon, Missouri.30 C. Medical Diagnosis and Prognosis: PVS and “Sleeping Beauty” Both Karen Quinlan and Nancy Cruzan, like Terri Schiavo after them, were eventually diagnosed as being in a persistent vegetative state. At the time of Karen’s diagnosis in 1975, recognition of the syndrome was quite new. PVS had been described first by Jennett and Plum in the Lancet just three years earliergl in an attempt to find a less offensive term for patients who were sometimes crassly called “locks” or “goons” in the medical slang of the time.32 At the time of his testimony in the Quinlan case, Plum testified that he had per- sonally examined no more than 25-30 persons in PVS and had complete records on only 40-50 more around the world.33 In a prominent article published just a few years before the Lancet article on PVS, a Harvard committee had coined the term "irreversible coma” to describe the irreversible cessation of all brain activity, including activity in the brain stem. The Harvard committee proposed to bring irreversible coma within the definition of death.“ Naturally, some confusion arose over whether Karen Quinlan was dead or alive because her coma was also described as "irre- versible." These new brain death standards had not been accepted in law by many states, including New Jersey, so their legal status was ambiguous.35 In a significant but now unappreciated aspect of their decision, the Quinlan court accepted the new brain death standards and declared that, under those stan- dards, Karen was alive as her brain stem continued to function. The recognition of PVS by the New Jersey Supreme Court in Quinlan also catapulted this new category of unconsciousness into the publicH—as well as the legislative and judicial— arena and gave it significance beyond medical circles. As courts developed the law on a case-by-case basis after Quinlan, and as legislatures responded tentatively at first with advance directive statutes, PVS became a legally significant category, distinct from other non—terminal conditions such as advanced dementia or minimal consciousness, in analyzing withdrawal of life- sustaining treatment. Although the sleep-wake cycles, the contractures of the limbs, the aimless eyes, and in Karen’s case bedsores “so deep that the hipbone could be seen beneath,”36 had all been described in court opinions and news articles, Karen Quinlan remained a "sleeping beauty” in the public imagination. This was exactly the image of their beloved daughter that the Quinlans wanted to convey: “Although we knew that . . . Karen’s condition was nothing like the glorified image of a ‘sleeping beauty’fiwe nevertheless wanted her to be remembered as such. No one needed to see what Karen really looked like?” u—nm H4—n. nu HM! Lib-l- :‘fl‘d m< O b 11 l}: ti bu I'E N be 01 law ro sh be he tllE Chapter 3: Quinlan and Cruzon In part because of the Quinlans’ decision to keep Karen’s physical condition private, film of Nancy Cruzan, broadcast on the evening news, was the first encounter with a PVS patient for most of the general public. Bill Colby, the Cruzans’ attorney, recalls that his first visit to Nancy was “among the most tuiset- tling and disquieting experiences of my life.” He says: “I think maybe I expected to see Sleeping Beauty: eyes closed, skin white, serenity embodied. If the cases about other families I’d read in the law books had told me what to expect, some- how I missed it.”38 Perhaps the most startling characteristic revealed to the public in these broadcasts was that Nancy’s eyes were open. Unconscious, but with her eyes “open in the promise of speech,”39 breathing on her own, grimacing, and star- tling at loud noises — the dissonance between the appearance and the diagnosis is dramatic. Similarly, Julia Quinlan recalls one evening with her daughter years after the withdrawal of the ventilator: “As I kissed her good night, . . . I told her I loved her and wondered if she heard me, maybe just this once. I knew the answer, but sometimes your heart, not your intellect, rules you.” More disturb- ing was the grimacing and thrashing and the response to pinches and cold water; Julia Quinlan says that she “sat by Karen’s bedside day and night and watched her grimace as though she was in pain. The doctor assured me she was not. Butl was not convinced.” 0 Controversy over Karen's situation included conflict over whether she truly was in a persistent vegetative state and whether her condition was irreversible. Critics charged that Karen would recover consciousness. As it would be many years later for Terri Schiavo, newspapers covering Karen’s case constantly reported stories of individuals who had come out of comes. One such individual, in fact, came to New Jersey and held a press conference reporting how his coma of one-month’s duration had been “like Utopia,” and how he, and likewise Karen, had to be forced to return.“ It was no different for Nancy Cruzan. One doctor called to testify by the state had said in an earlier deposition that Nancy was in a chronic vegetative state and had only a “minuscule probability of ever having any cognitive function.” None- theless, at trial the doctor testified that while examining Nancy once again just before his testimony, she had fixated on his face, responded to sound, had a pain response higher than mere reflex, and was not in PVS.42 in contrast, Dr. Ronald Cranford, the expert witness for the Cruzans on the issue of PVS generally and Nancy’s diagnosis in particular, testified that there was “no hope of recovery” in her case. On cross-examination, however, the state’s attorney probed a notori- ous situation in which a patient that Cranford had diagnosed as being in PVS had later recovered some cognitive function.‘13 The debate spread outside the court« room: in the popular media, Pat Robertson reported on his 700 Club television show that Nancy Cruzan could cry and could smile as she felt pain and joy.“ As their daughter’s future became clearer to the family, however, the Cruzans began to consider some difficult decisions, as had the Quinlans before them. D. Coming to a Decision By May 1975, approximately a month after Karen’s collapse, Julia Quinlan had concluded that “there was no medical help for Karen . . . [and} the time that the respirator could help her had passed." Still, Julia felt she could not share this 59 60 ' pastor of the Catholic parish where Julia worked as the p Health Law and Bioethics: Cases in Context d to listen to any hints that Ellen told Julia much later were going to turn off the .” But Mary Ellen “gradually recognized ’s brother John “accepted the fact that view with her family, as “they were not prepare {Karen} might not recover.” Karen’s sister Mary that she “didn’t really understand at first why we machine. it was kind of a shock. . . the futility of the machines,” and Karen she was not going to make it.”45 Joe Quinlan was “the last holdout.”4” He was hostile to any suggestion that Karen might not recover, and had responded to a gentle suggestion by Julia of the futility of additional care in a “low, taut tone she’d never before heard: ‘I don’t ever want to hear that.’ ""7 When a nurse and close friend of the Quinlans tried to talk to Joe and explain that this wasn‘t an “ordinary coma,” that “the thinking part of her brain is dead,” and that what they observed were only “primitive reflexes,” Joe was absolutely furious. Finally, in mid-June, Karen’s neurologist at St. Clare’s, Dr. Robert Morse, responded to another of Joe’s reports that Karen was getting better. Dr. Morse told Joe: “What am I going to say to you, . Joe? . . . Even if God did perform a miracle so that Karen would live, her damage is so extensive that she would spend the rest of her life in an institution!” Only then did Joe Quinlan begin to accept that Karen would not recover, and he wept in his car as he drove home, carefully wiping his eyes before he went inside. 8 Joe and Julia Quinlan sought counsel from Father Thomas Trapasso, the riests’ secretary. Father “God has made the decision that she’s going to s decision, that’s all.”"9 Father Tom’s advice so Toni assured the Quinlans that die. You’re just agreeing with God’ was confirmed by Father Paschal “Pat” Caccavale, St. Clare’s chaplain. On July 31 , three-and—a-half months after his daughter’s collapse, lan gave Dr. Morse permission to remove the respirator. According to Joe, Dr. Morse said, “I think you have come to the right decision.”51 Joe signed the documents provided by the hospital authorizing them to discontinue “all extraor- dinary measures, including the use of a respirator” and releasing the hospital from liability.52 The Cruzan family made a similarly reluctant journey. It was when Joe and Joyce Cruzan brought Nancy home from MRO for Christmas in 1984, in the hope that the return home for the holidays would trigger some response from her, that 53 Nancy’s father also began his own Christy lost all hope for her sister's recovery. investigation into brain injuries and comes at this time, reading everything he could find. When Joe Cruzan came across an article on PVS, he told Joyce that the description {it perfectly?" a diagnosis later confirmed by MRC’s medical director. Armed with a name for her condition, Joe began calling people all around the country to learn as much as he could. He spoke at length with doctors, medical ethicists, priests, preachers, lawyers, and family members of PVS patients, like Patricia Brophy55 and the parents of Nancy Johes,"G whom he had read about in a newspaper column. Joe’s investigation and consultations over the next two years led to a con- clusion that he and Joyce kept to themselves for a time. In October 1986, however, when Sue ROWell, a nurse at MEG, related her experience with the health crises of her Own son, the Cruzans shared with her that they had decided 'nserted.57 Word to stop the feeding tube, nearly four years after it had been 1 about the Cruzans’ decision spread quickly through MEG, and the ripples of conflict that would become a torrent appeared almost immediately. Both the Quinlans and the Cruzans ultimately would turn to the courts for resolution. rn nap—‘- “yum-mu...“ moan Oml—l lat ter :he ed 1at lat he n t to ng ve ist 1e 31‘ 39 Hit—l \- : (D - .4 panda-cut.)th I: van uv Chapter 3: Quinton and Cruzon E. Trigger for Litigation July 31, 1975, when Joe Quinlan gave permission for withdrawal of the ventilator from his daughter, might have been the end of the story for the Quin- lans had Dr. Morse and the family been of the same mind about finding some way to accomplish what they wanted— as other families and doctors had done with this new respirator technology.58 Instead, after consulting with his former teacher, Dr. Morris Bender, chief of neurosurgery at Mt. Sinai Hospital in New York, Dr. Morse decided that he would not terminate ventilator support after all because he was convinced that no established medical custom or standard supported that action.59 At this point, the decision over Karen’s future left the intimacy of the bedside. The Quinlans met with administrators and legal counsel for St. Clare’s to pursue their decision. The hospital’s attorney noted that Joe Quinlan was not his adult daughter‘s legal guardian. The attorney informed Joe that he would have to go to court to be formally appointed, even though the hospital had accepted Joe’s consent on his daughter’s behalf for all of her prior medical treatment. Moreover, the hospital’s attorney didn’t know whether the hospital would comply with the family’s request to withdraw the ventilator even if Joe were appointed guardian. This was the first time that St. Clare’s had dealt with such a situation, and it was moving cautiouslyfiO The Quinlans found an attorney, Notre Dame alumnus Paul Armstrong —~ a Legal Aid lawyer who decided to take the case on his own time without pay, but ended up devoting his full time to the cause.61 Armstrong offered the Quinlans an option that might have avoided the public spotlight and the landmark case that followed. Paul suggested to Joe Quinlan that he could petition to be his daughter’s guardian but not ask specifically for authority to discontinue the ventilator, as St. Clara’s stated objection so far was only that he lacked legal authority for the decision. Joe Quinlan rejected this approach, saying: “I don’t think that would be honest, and I don’t think it would do much good. What I’d like is for everything to be open and aboveboard. . . . I think that would help the doctors, too. They wouldn’t have to worry or to feel guilty. . . 3’62 And so it was that the Quinlans’ time in the courts began. Joe and Joyce Cruzan had been appointed formally as co-guardians for their . daughter Nancy in January 1984, more than two years before they made their decision concerning life-sustaining treatment. Nancy’s husband Paul did not attend the guardianship hearing in 1984, but didn’t oppose the appointment. Six months later, Joe and Joyce petitioned the mint for a divorce on behalf of their daughter. Tension between Joe and Paul had been building throughout Nancy’s hospitalization: “Joe was at the hospital all of the time, day and night; Paul visited and left.”63 Nancy’s father thought her husband should be just as attentive. Once Nancy was transferred to MRC, about 45 miles from Carterville, Paul’s visits waned, and he did not oppose the divorce. Nancy’s sister Christy believed that Paul probably realized that his iife with Nancy was gone forever, whether or not they divorcedfi‘1 Joe Cruzan had developed a cordial relationship with Judge Charles Toe], the probate judge who had jurisdiction over Nancy‘s guardianship. in September 1986, when Joe and Joyce Cruzan first decided that they wanted to stop the nutrition and hydration, Joe told Judge Teel that he had heard that some families had taken patients like Nancy home to die. Judge Teal advised against it, saying, 62 Health Law and Bioethics: Cases in Context according to Joe’s notes of the conversation: “Every rinky-dink politician is out to make a name for himself,” and the prosecutor would surely act if it became known. The judge added that he would have .to intervene himself because remov- ing the tube would be “murder.”85 Thus, the option of simply taking Nancy home, which some suggested should have been done, was out of the question. Transferring Nancy to a private facility that would support the family’s decision was still a possibility, one that the MRC staff had been trying to persuade the Cruzans to do for some time.66 In 1984, when Don Lamkins became the administrator of what was then known as the Missoru‘i State Chest Hospital ronic respiratory illnesses, he confronted (MSCI—I), caring for persons with ch a failing enterprise. Lamkins refocused MSCH’s efforts on the care of an emerg- ing class of brain-damaged patients who had been saved by the greater capacities of the emergency room, the intensive care unit, and outside-of—hospital CPR,“ dealing with what one nurse called "the aftereifects of what heroics are done on the roadside."68 MSCH had a notably high success rate in weaning respirator- dependent patients, and changed its name to the Missouri Rehabilitation Center in 1985 to reflect its new purpose.69 After the Cruzans’ conversation with Nurse Rowell concerning their decision to stop delivery of nutrition and hydration became known, Lamkins intensified efforts to transfer Nancy out of this state— owned facility.m Joe and Joyce Cruzan resisted all efforts to transfer their daughter, fearing that the quality of care for Nancy would decline and perhaps viewing the state hospital where she had lived and they had visited for so long as her home. At one point, they went to Judge T eel for help. The Republican judge called his powerful friend, Missouri Senator Dick Webster, who with one call to the Department of Health assured that the tall: of transferring Nancy would stop?1 Ironically, the Senator’s son, Bill Webster, would later lead the case for the state against the Cruzans as Missouri’s Attorney General. On May 28, 1987, the Cruzans met with administrators from MBC, and Joe delivered a letter he had written himself detailing their request for withdrawal of the feeding tube. Don Lamkins, a “devout member of the conservative Church of Christ,” disagreed with the Cruzans’ decision, viewing it as a violation of the Commandment that “thou shalt not kill,” but believed that “it was their decision to make?” He wondered, though, why the Cruzans would resist a transfer for fear of their daughter developing bedsores, when on the other hand they wanted to remove the feeding tube and let her “starve to death.”3 Lamkins informed the Cruzans at that meeting that he sympathized with them, but would have to take the decision to his superiors at the Department of Health. Robert Northcutt, general counsel for the Department, responded in a memo to Lamkins’ request for guidance, saying that the Department would not proceed without a specific court order but that he doubted that “a Missouri Court, while it may be willing to remove life-support systems, w [ould] be willing to authorize the deliberate dehy» dration and starvation of a comatose or coma patient?“ Joe and Joyce Cruzan searched for an attorney to represent them and were referred to Shook, Hardy 8: Bacon, a large Kansas City law firm willing to do pro hono work. Young Bill Colby, a fifth-year associate, took the case with the support of his firm. As was the experience of the Quinlans’ attorney Paul Armstrong, this case would consume Bill Colby for many years?5 As Armstrong did for the Quinlans, Bill offered the Cruzans one last option to avoid litigation: they could move their daughter out of Missouri to another state Chapter 3: Quinton and Cruzon where withdrawing nutrition and hydration would not he an issue. Joe would not hear of it, arguing that "if we’re doing what is right, why do we need to move her somewhere? . . . VVe’re Missourians. Why should we have to move her out of l'viissouri?"76 With Joe’s mind made up, Biil Colby turned to preparing for trial. The Cruzan litigation began, prior to filing any petition, with Judge Teel and Bill Colby having lunch at a local restaurant near the courthouse. There, the Judge reported that he had already talked “on another matter" with Attorney General Bill Webster, whom the Judge had known as a Child and still called “Billy.” The Judge toid Colby that he didn't expect a problem from the Attorney General, although he advised Colby to include the State and the hospital as defendants in his petition. Colby then met with Robert Northcutt and recalls that Northcutt said: rr\"l’e want this to be a friendly suit. We need clarification as much as you do on what the law is. W e’li oppose you at trial, and if you win, we’ll appeal, but we don’t want it to be adversarial. . . . we just need to know what the rules are.M17 Northcutt said he didn’t want the process to be hard on the family; but it could not have been otherwise, and the friendly suit did not stay that way for long. F. l\'Iedia Force and Protests For years, the Quinlans and Cruzans spent every moment with television cameras and reporters camped out at their homes, at the institutions where their daughters lived, and. surrounding them whenever they moved from one place to another. The day after Joe Quinlan fiied the petition for guardianship, the newspaper delivered to his front door had a banner headline: “Father Asks the Court to Allow Him to Kill His Daughter.”8 Although Paul Armstrong had made a plea for privacy for the family, they watched their “front lawn . . . crush under an army of reporters and photographers, TV cameras and sound equip- ment. . . .“79 Julia recalls that the family was “inundated” by the press, with one reporter tapping on her car window to offer her $100,000 or more for a current photo of Karen. Karen’s graduation picture was "as recognizable in Japan, Mexico, England, and most European countries as it is in this country,”80 and the Quinlans’ story was covered each day on the evening news. When the New Jersey Supreme Court’s decision was announced, 100 reporters attended a press conference at Our Lady of the Lake Elementary School, which was carried live on all three television networks, and the New York Times published the full text of the court’s opinion.81 Karen’s ultimate transfer from St. Clara’s to the Morris View Nursing Home was a secret, strictly orchestrated affair, complete with a decoy ambulance and other efforts to assure that the press, and protesters, would not threaten or harm Karen.32 For nearly ten years, the press kept what Julia Quinlan calls a "death watch” outside the nursing home where Karen lived out her life.83 Shnilarly, film of the Cruzans captures crowds of reporters surrounding Joe, Joyce, Christy, and Nancy’s young nieces as they walked together to court. At one point, Joe is heard warning the reporters in a low growl: “If you get into my granddaughter here, there is gonna be a problem.”84 Otherwise, though, he felt helpless, complaining that “[T] here’s not a damn thing I can do about it. Except just watch.” He longed for the day when he would be able to go home and "watch the evening news without seeing ‘Cruzan’ splashed all over it.”853 64 Health Law and Bioethics: Cases in Context Yet both the Quinlans and the Cruzans also used the media to tell their stories in the way they wanted. The Quinlans wrote a book and were advisors for a television movie dramatizing their experience. The Cruzans told their story on the PBS series, Frontline. Elizabeth Arledge, a Frontline producer who was about the same age as Nancy, had contacted the Society for the Right to Die H one of the organizations that Joe Cruzan had consrdted~for suggestions of families who would be facing controversial end—of—life decisionsfi’6 The Cruzans allowed Frontline to film their experiences, including their visits with Nancy, interviews with the staff of MRC, and the events surrotinding Nancy’s last days. Both Karen Quinlan and Nancy Cruzan became the objects ofpubiic protests and attempted interVentions, just as Terri Schiavo would become years later. The Morris County Sheriff responsible for security at the courthouse during the Quinlan guardianship proceeding reported that, “Everybody was getting letters, sometimes packages. . . . The people who wrote seemed to take two basic views. One was ‘Don’t let Karen die, or we’ll kill you.’ The other was ‘Let her die, or we'll kill hemmg” Wells Fargo guards kept at bay the "hundreds of faith healers who came to the hospital pleading to see and awe Karen.”88 Protesters also set up camp at MRC during the course of the Cruzan litiga- tion, and several were able to enter the facility before security was increased. One man walked through the halls carrying a cup and saying “I have a friend upstairs and I was trying to give her a cup of water. . . . {Tlhere are policemen up there and they won’t let me give her a cup of water.” The police removed pro- testers occupying the stairs leading to Nancy’s floor, and Joyce Cruzan described how "a number of times Joe leaned against the door [ofNancy’s room} and held it shut. . . . [Y] 011 could hear that there was stuff going on out there.” Don Lamkins commented that the MRC staff, too, were “feeling like we’re being attacked by all these people coming in and that means that we band together a little closer and try to take care of each other.””” G. The Courts Decide In November 1975, Judge Robert Muir denied Joe Quinlan’s petition for appointment as the guardian of his daughter with authority to remove her from the ventilator.’JO Joe Quinlan was "enormously sad” after that decision and began to visit his daughter three to four times a day. In fact, Dr. Morse asked him to reduce his visits because it made the nurses "so deeply sad” for him, a suggestion that outraged the Quinlans.”" They continued the visits, but had no contact thereafter with the doctor. The Quinlans appealed Judge Muir’s decision to the New Jersey Supreme Court. That court, in a unanimous decision, authorized Joseph Quinlan to decide on behalf of his daughter that the ventilator should be discontinued.92 After a close examination of his character, the coru‘t decided that Joe Quinlan was a worthy decisionmalter for his daughter. The court also decided, however, that Karen’s reported conversations concerning her desires, which were and remain typical for a young person, were too remote and nonspecific to be relevant and that a specially constituted hospital committee had to review her prognosis before withdrawal of the ventilator. The Cruzans had a longer legal road to travel than did the Quinlans. Judge Teel issued his order on July 27, 1988. Iwas teaching a class for state court judges about legal issues in life-sustaining treatment that day, with the man who would Chapter 3: Quinlan and Cruzan be writing the law for mu state sitting as a student in our ciassroom. At the beginning of a break, he announced, "Ma’am, Ihave my decision in the Cruzan case here if you would like to look at it.” Judge Teel, who first believed that removing nutrition and hydration would be murder, had written an opinion ordering MRC to comply with the Cruzans’ decision. In discussion in 0111‘ ciass, it was clear that he had focused his efforts primarily on establishing the right to withdraw nutrition and hydration. The Judge relied 011 a liberty interest—“as in give me liberty or give me death,” the Judge said in class discussion that day. He had rejected the right to privacy because, he said, Cruzan’s case "had nothing to do with abortion." ' Thad McCanse, who had acted as Nancy’s guardian ad litem and who had fiied a report with Judge Teei supporting the Cruzans’ decision, filed an imme- diate appeal of the decision that had followed his recommendation, possibly at the request of Judge Tool.93 The Missouri Supreme Court wanted to hear the szan case, and initially scheduled argument for the same day that the court expected to hear arguments in an appeal of a trial court decision that a hospital had the right to stop ventilator support for a brain—dead patient over the objec- tions of the family. As it turned out, that patient’s heart stopped and he was not able to be resuscitated. That case was removed from the docket, and the court considered the Cruzan case standing alone.94 The Missouri Supreme Court, in a 4-3 decision written by Chief Judge “Chip” Robertson, reversed Judge Teel's order. The court held that state law required life-sustaining treatment he continued unless Nancy’s desires regarding treatment were proven by clear and convincing evidence, which was lacking in the record.95 Robertson later called Cruzan an “excruciating case for everybody involved,” a case that has “haunted” him since. Indeed, Robertson later said he did not pay much attention to the Schiavo case "because it brings up too many difficult memories for me.” As he explained, "i may well have reached under those circumstances the same decision that [the Cruzans] had reached, but I had to make sure that the fact that I would have reached that would not have deprived Nancy Cruzan of what her wishes would have been.”96 The Cruzans appealed to the U.S. Supreme Court, which in a plurality opin- ion upheld Missouri’s evidentiary requirement against constitutional challenges? Perhaps because he had to write a decision for a fractured court, or perhaps because a claim to a constitutional right to physician-assisted suicide was on the horizon, Justice Relmquist's opinion was quite tentative on the issue of the content of a constitutional right to make decisions regarding life-sustaining treat- ment and whether nutrition and hydration could be treated differently from other medical treatments. The Supreme Court held that the Missouri require- ment of clear and convincing evidence was constitutional \Vhile the scope of the constitutional rights involved was ambiguous, for the Cruzans the decision was clear enough — they had lost. Yet the Cruzan’s lawyer, Bill Colby, regrouped from defeat and focused on eight words in the Court’s plurality opinion in which Justice Relmquist justified the high standard of proof of intent. The high standard, according to the opinion would protect against erroneous termination of treatment while preserving the possibility of subsequent medical developments or the “discovery of new evidence regarding the patient's intent.”98 The case was placed before Judge Tee! once again to test only whether there was clear and convincing evidence that Nancy would want the feeding tube removed. Two new witnesses had come forward to 66 Health Law and Bioethics: Cases in Context report on relevant conversations they had had with a co-worker they had known only as “Nancy Davis,” and not as “Nancy Cruzan,” when they worked with very seriousiy impaired children.99 There has always been some speculation that there really was no new evidence; Colby describes one reporter telling him that the new evidence seemed incredible and that others felt the same")0 Judge Teel himself, at a conference at Saint Louis University Law School, said that he resented the implication that he would assist in manufacturing evidence. Attorney General Webster decided that the state would not participate in the one~day trial. According to Colby, Don Lamkins objected to VVebster’s decision, saying “[VV} hen this went back to court, nobody represented us.”101 Finding clear and convincing evidence of Nancy’s choice, Judge Teel ordered MRC to carry out the Cruzans’ decision. H. Intellectual Leadership Protesters _weren’t the only ones with strong opinions about the ethics and morality of the issues that the courts were considering. Both cases were also significantly influenced by thought leaders in the Catholic Church and in medicine. 1. Catholic Views The Catholic perspective had a direct influence on the result of the Quinlan litigation, through the counsel of a parish priest for the family, the support of the local bishop, and a then—twentyyear-old papal statement. Parish priest Tom Trapasso counseled Joe and Julia Quinlan that they were not required to con- tinue ventilator support when there was no hope of recovery, and the hospital’s chaplain agreed.1 Bishop Lawrence Casey, head of the Paterson diocese in which the Quinlans resided, supported them publicly and consistently throughout the process, and the New Jersey Catholic Conference (the organization of the bishops of the state) filed an amicns brief to support the Quinlans’ claim on moral grounds.103 The Quinlan opinion describes the Catholic position at length, ostensibly solely to evaluate Joe Quinlan’s character as guard» ian of his daughter.104 Yet the court’s extensive exposition, with direct quotation of nearly all of the New Jersey bishops’ statement on the case, belied the denial of greater significance and provided a powerful showcase for the Catholic perspective. In supporting the Quinlans, the New Jersey bishops relied upon a 1957 address by Pope Pius XII describing the new capacity for resuscitation and mechanical respirator support in terms very much like the Quinlan situation itself. The statement observed that when a doctor resuscitates a patient, “the family usually considers this improvement an astonishing result and is grateful to the doctor.” Over time, however, the doctor may find that “the family considers that the efforts he has taken are improper and opposes them . . . when the patient’s condition, after a slight improvement at first, remains stationary and it becomes clear that only automatic, artificial respiration is keeping him alive.”105 The papal statement relied on a distinction between ordinary and extraordinary means, with extraordinary means being those that impose a “grave burden for oneself or another,“ to conclude that there is no obligation al tl tll hl. te Pi fifl otl no SEE] As sel tio; irrl siox Ser beg in ( refs the PVE the Feb: part “res acco be p U.S. lad known l with var r ation that ailing him i saiiie.mfl hool, said evidence. ticipate in Webster’s ed us.”101 i ordered thics and rare also 1 and in Quinlan nrt of the est Tom . to con- ospital’s diocese iistently :e (the tort the Iatholic :guard- .otation : denial Iatholic a 1957 an and tuation t, "the :eful to tsiders en the {‘3’ and g him '3' and rose a gation Chapter 3: Quinlan and Cruzon to continue the use of the ventilator in this circumstance. The 1957 papal state- ment, however, did not address the issue of nutrition and hydration, and the application of the ordinary—extraordinary distinction to that treatment, though anticipated by some,106 was not clear at the time the New Jersey bishops filed their brief. By the late 19805, Cruzan revealed significant disagreement within Catholic circles regarding the termination of nutrition and hydration for PVS patients. A number of Catholic health care organizations, led by SSM Health Care System in St. Louis, submitted an “important” amicus brief to the Missouri Supreme Court supporting the Cruzans.107 This group, together with health care systems representing more than 100 Catholic hospitals, later submitted a second amicus brief to the US. Supreme Court, but this time formally in support of neither party.108 At the same time, however, the US Catholic Conference (USCG), the organization of all bishops in the United States, also filed an ainicus brief with the US Supreme Court, but in support of the state of Missouri. 109 A com- parison of these briefs shows significant disagreement within the Catholic Church on whether withdrawal of such treatment is morally permissible. The SSM brief noted that the amici did not represent "the official teaching authority” of the Church; indeed there had been no “authoritative statement” by the Catholic Church on the issue of the withdrawal of nutrition and hydration. This brief argued that “the dignity and sanctity of life” did not require the “asser- tion of an absolute value in the maintenance of biological life regardless of other human values”; that “both undertreatment, especially of the disabled or unpro— tected, and overtreatment of the dying” are to be avoided; and that persons in PVS are distinguishable from those who are merely impaired.”0 in contrast, the USCG brief argued that “food and water are necessities of life" and that “negative judgments about the ‘quality of life’ of unconscious or otherwise disabled patients have led some in our society to propose withholding nourishment precisely in order to end these patients’ lives.”1“ Notably, at the same time the USCC filed its brief, a guide published by the Catholic Health Association for priests and nuns executing durable powers of attorney for them- selves included a form that provided for the withdrawal of nutrition and hydra- tion when the intervention would “only prolong my inevitable death or irreversible coma”?12 The conflict within these “Catholic” briefs was also being played out in revi- sions to the bishops’ Ethical and Religious Directives for Catholic Health Care Services (ERDs), undertaken during the course of the Cruzan litigation, beginning in 1987. The first draft of revisions to the ERDs’ section on “Issues in Caring for the Dying Patient,” produced in May 1991, included no explicit reference to nutrition and hydration, implying that it should be evaluated on the same terms as any other life-sustaining intervention. This draft addressed PVS specifically, however, by calling it “partial brain death” and recognizing that the condition was relevant in determining proper treatment. A later draft in February 1992 referred to persons in PVS as "dying patients” rather than as partially brain dead, and described "life—sustaiimig technology” as including "respirators, antibiotics, artificial feeding and hydration.” This 1992 draft, according to one commentator, did not require that nutrition and hydration be provided “simply because it kept the person alive.”113 While the revision process was lmderway, bishops in various dioceses in the U.S. were taking conflicting public positions on the permissibility of removing Health Law and Bioethics: Cases in Context 5 conflict among the bishops an choose one position defin- arlier, the ERDS d hydration from PVS patients. Thi ' ocess. Rather th loomed over the BBB revismn pr as the USCC brief had done two years e ients were to be guided by instructions itively over the other, ysicians and pat 1993 and 1994, different committees instead directed that ph from the local bishopd” Throughout within the bishops' national organization responsible for the ERDS continued to battle over the permissibility of withdrawing nutrition and hydration from PVS patients. In the end, however, this process did not resolve the question, 5 and it remained open in the EBDS.1 In 2004, however, Pope John Paul H delivered a public ad support Terri Schiavo’s Catholic parents in opposing discontinu and hydration “6 In 2007, the U.S. Conference of Catholic for their daughter. Bishops, the successor C, asked the Vatican’s Congregation for the nutrition an dress intended to ation of nutrition to the USC Doctrine of the Faith (CDF) to answer more formally questions concerning revision of nutrition and hydration to persons in the vegetative state. The 2007 GDP responsa repeated the message of the 2004 papal address that persons in PVS must receive “ordinary and proportionate care which includes, in principle, the administration of water and food even by artificial means.” 17 Significant disagreement still pe ' this point among Catholic theologians and ethicists, with some arguing that the 2004 and 2007 Vatican statements regarding nutrition and hydration, which by their own terms apply only to PVS patients, are to be construed quite narrowly and allow for a range of deci- sions even in such cases.118 2. NIedicine The Quinlan controversy occurred at a time of significant change in medical standards and practices regarding new resuscitative capacities and the use of ventilators. Karen Quinlan’s neurologist had refused to remove the ventilator because he could not “break medical tradition.”119 Another physician-witness . will ever interrupt a device which is performing a testified, “No physician . . "120 The Quinlan court, however, recognized manifesta- lifesaving measure. . . . e of hidden practices; tions of changer—the evidenc conflict among thoughtful physicians as to the t that legal standards would not reflect growing professional debate; and fears emerging medical practice, putting individual doctors at risk for criminal prosecution.121 The Quinlan opinion elicited of the medical-coimntuuty, especi casesf122 Although some argue that Quinlan reaffirmed physician pow just as likely to have accelerated change and determined the course of that change by legitimizing one perspective (i.e., that withdrawal of life—sustaining treatment is morally sound) and by its claim that such decisions are subject to tlizei “common moral judgment of the community” rather than to medicine alone. 'me of Cruzan, the leadership in medicine had embraced the position in Quinlan as to the permissibility of withdrawing life—sustaining treat- ment. Although some pockets of dissent persi ted among physicians on the issue of nutrition and hydration for PVS patients, major medical organizations pre' ice that some believe was too sented a united and vocal force in Cruzan —— a vo - - . s restrained in Schiavo.12 eactions from some members lvement of the courts in such Eli-323 it is strong negative r ally as to the invo adopted lishops defin- - ERDS lotions nittees tinned 1 from astion, ded to trition 1tholic 'or the arning 2. The lI'SOl’lS es, in 1311:1117 3gians nents sly to " deci— edical we of ilator tness dug a festa- wing; (:5; a aflect ninal ilJers such 3 it is that ining o the 3.124 ition reat— ssue pre- ; too Chapter 3: Quinlan and frozen I. ‘Withdrawing Treatment The courts had made their decisions in Quinlan and Cruzan, and their orders were clear. Yet the withdrawal of treatment in each case still met with resistance and conflict. The struggle between the Quinlan family on the one side and Dr. Morse and St. Clare’s Hospital on the other continued for a full six weeks after the state supreme court’s decision. Even after attorney Paul Armstrong intervened, St. Clare’s would not cooperate with the court’s order as the facility disagreed with the bishop’s statement concerning the morality of the decision.126 Shortly thereafter, however, the doctors took the Quinlans aside and told them that they would begin the process of weaning Karen off the respirator, assuring the par- cuts that it would be a "slow, but safe process.“127 As a result of this weaning process, Karen began to breathe entirely on her own on May 22, 1976. Karen was transferred to the Morris View Nursing Home, the only one of the 22 facilities contacted by the Quinlans that would accept their daughter. Joe and Julia continued to visit each day. Julia has said that even then her husband “was not ready to face the reality of Karen’s ordeal. [Hie still thought that God would perform a miracle and bring his daughter back.”128 More than nine years after being weaned off the ventilator, and more than two years after Nancy Cruzan went into PV S, Karen Quinlan died of pneumonia on June 11, 1985. Her mother said goodbye: “W hen I kissed my daughter for the last time, I thanked God for blessing me with this beautiful child and for the twenty-one happy years we shared, as well as the ten painful ones.”129 Although it has been reported that Karen had continued to be treated with antibiotics and “feed- lllg,”130 her mother writes that Karen received no antibiotics, at least for this final episode of pneumonia.m] In an interview some time after Karen’s death, Julia also reported that the family had never permitted “tube feeding” for Karen.132 The Cruzans did not experience the delay that the Quinlans had between the court’s order permitting withdrawal of treatment and compliance with that order, although some at MRC had tried to persuade the Cruzans to wait several days until after Christmas. Within two hours of Judge Teel’s final opinion in the case, however, Dr. James Davis simply went to Nancy’s room himself and removed the tube from her stomach, placing a bandage over the wound.133 Nancy was moved to the hospice section of MRC. The next day, Don Lamkins informed Dr. Davis that Governor John Ashcroft had called and asked to have the tube reinserted so that the Governor’s office could have some time to consider alternatives. Soft-spoken Dr. Davis replied that “there was no medical reason” to reinsert the tube; he had a court order authorizing its removal; and he would not reinsert it.134 Dr. Davis had testified in the first hearing before Judge Teel that he was not certain that it was appropriate to remove the feeding tidie.135 But “through a lot of reading, introspection and meditating, whatever you want to call it,” Dr. Davis had come to the conclusion that sometimes r‘you cannot relieve suffering while you are prolonging life,” and that the two goals of medicine are not “mutually compatible” in this type of case.136 The action left the MRC staff in turmoil. A head nurse told reporters that “we don’t want her blood on our hands”; another said that she felt as if she had “been beaten with a club”;l3? and some argued that it would he more humane to 70 Health Law and Bioethics: Cases in Context allow Nancy to die quickly by using a lethal medication.138 Don Lamkins suffered a crisis of conscience: ding how much blame I have, how much moral in charge of the whole thing. What part am I I could have {Blow far The hardest part has been deci responsibility I have for being playing in her death? Am I causing it? Should i have stopped it? . . . gotten myself out, but somebody else would have come in and done it. should I have gene?139 that Lamkins remained polite, proper, rdeal, although “the strain showed on his face.”1‘l° Protests intensified outside NLRC with many different groups participating, including Operation Rescue. In addition, several individuals and groups filed petitions for emergency writs with state and federal courts. The courts dismissed each of these petitions, with one judge issuing a ruling stating that further filings 141 would be considered an abuse of process. Nancy died on the day after Christmas in 1990. Nancy’s dying process was no different than the family had expected from talking with other families who had experienced similar situations. Patricia Brophy had described how her 2 husband had passed awa eacefully, with no sign of suffering whatsoever. And so it was with Nancy. 4 Her father Joe wrote his goodbye while his daughter was dying. It said in part, “Though brilliant, her life was terribly short lived, but she has left a flaming trail, a legacy . . . and I’m damned proud of her. . . . Now we walk with her to the door of death so that she may at last pass through and be free. So fly away, little sister, and have fun."144 Colby observed, however, professional throughout the o J. The Aftermath the same. The Quinlans and the Cruzans could not return to life as they had known it before the battles over their daughters’ lives. Julia Quinlan feared for the survival of her marriage and the health of her other children, Mary Ellen and John, after the litigation was over.”5 Eventually, she was able to find a greater peace. She and Joe used the proceeds from their book to establish the Karen Ann Quinlan Hospice, which opened in 1980, at a time when the hospice movement was just beginning to develop in the United States. Joe Quinlan died of cancer in 1996, at home and with the care and support of the hospice that bears his daughter’s name. Julia is proud of what her family accomplished and of what she views as Karen’s legacy. She says that she has no regrets: "We would do the same thing all over again. . . . I thank God that we were able to make the decision as a family and still he a close loving family after, it all.”146 The Karen Ann Quinlan Hospice celebrated its Silver Anniversary in 2005, serving 700—800 patients each yeah”? For Joe Cruzan, however, life became unbearable, and he committed suicide on August 17, 1996. Joe left a note, saying that he loved his wife, daugh- ters, and granddaughters and that “I love Nancy and am sorry about what hapa pened.” What did he mean — nily so much to do hat it took so long and cost his fax what they believed was right for their daughter? Or that they had done the wrong thing?148 Joe Cruzan’s frustration an (1 pain during the years of litigation were palpable. Photographs before the fight Show a man \ Their lives were never vith a broad smile and Hfirrt-rmmHH-y—i‘u.._. l5 C'lfi‘ty {5‘0 i suffered floral am I have w far )er, and face.”1410 icipating, ups filed lismissed [er filings ‘cess was ilies who how her seven!“ daughter ived, hut . . . Now gh and be :ould not its lives. th of her 'entuaily, 'om their 980, at a .e United 1 support er family 1e has no l that we 1y after it 3rsary in Il’flnlltted 3, daugh- rhat hap- uch to do 18 wrong [on were mile and twinkling eyes. That man had disappear showing him as drawn and taut. He had said: ln the year Chapter 3: Quinlan and Cruzon ed, a fact documented by later photos It’s made a very pessimistic, angry person out of me. . . . lfeel like I’m in a sack and l want to get out of it, but I don’t know where to hit. . . . 1 don’t know what to do. . . . I‘ve wondered, is my obsession for me now, that I’m not going to take no for an answer, or is it for Nancy? And in reality, I know that it’s not for Nancy. It's for everyone that’s in this condition. And to have the state come in and say “No you can’t do this.”149 after Nancy’s death, Joe worked tirelessly with a number of groups, including state bar associations, medical associations, and the lobbying arm of the Catholic dioceses of Missouri to persuade the Missouri legislature to enact legislation to recognize a durable power of attorney for health care, including instructions concerning the withdrawal of nutrition and hydration.150 Late the night before the vote, however, Joe called me and said, “I just don’t think this is enough.” He wanted to go to Jefferson City in the morning and tell them not to enact the legislation, convinced that no one would sign these documents and that the legislature would lose interest thereafter. He was passionate and didn’t want to settle for less than what was necessary. He finally acquiesced to arguments that the legislation’s statement concerning nutrition and hydration offset the more restrictive language of the state’s earlier living will statute, on which the Missouri Supreme Court had relied in folding a public policy against withdrawal e. The Missouri legislature passed the legislation, but in his own daughter’s cas family consent statute, as it has yet to return to the matter to adopt a broader many other states have done. Joyce Cruzan died of cancer two years after Joe’s death, having refused chemotherapy or other aggressive treatment and dying at home with the support of hospice. Before she died, she said that she had lived "an ordinary life" and that her family was actually Inil‘einai‘kalile.151 K. Conclusion Quinlan, Cruzan, and their progeny established a highly individualized inquiry for end-of—life decisionmaking—mwhat would this particular person [rather than the ordinary, typical, or “reasonable” person) want; what is her medical condition, and does it fit the categories that have been identified in the state’s statutes or cases or in her advance directive; is her family acting in good faith; and do all family members tell the same story of what she would want? That approach opens the door to honest, loving disagreements and, of course, to rancorous disputes, which fortunately are uncommon. Unlike Terri Schiavo's circumstances, most families and physicians come to some agreement about the course of life-sustaining treatment. Claims of public consensus on the issue of the withdrawal of nutrition and hydration from someone in PVS prior to the Schiavo controversy are overstated. The stories of Karen Quinlan and Nancy Cruzan illustrate the persistent pres- ence of sharp dissent, from different quarters at different times, but there none- theless. They also illustrate that public strategies meant to challenge the patient‘s diagnosis and prognosis, the patient‘s own desires, and the character of family members did not arise for the first time in the Schiavo conflict. 7] 12 Health Law and Bioethics: Cases in Context Principles aside, however, the Quinlan and Cruzan stories teach us most 29 , poignantly about the awesome suffering of families caught in legal conflict over 30: . these most painful of decisions. The stories confirm the intimacy of such deci- 3]. } sions as well as the burdens these families bear—burdens that have their own seamggffi moral significance. They reaffirm the intuition that families should decide such mom. 0'“: matters, just as much as Terri Schiavo’s story reminds us that this will not always mony of D, be possible. 33. i . 34, 1 Brain Dean Death, 252 ENDNOTES was f‘iinfop 33. 'l 1. William H. Colby, From Quinlan to Cruzan to Schiavo: What Have We Learned?, 37 Loy. U. is or shoal: Chi. LJ. 279, 287 (2006) (referring specifically to the Cruzan family}. dead, is th 2. 355 A.2d 647 (NJ. 1976). 28—29 [pre 3. 497 U.S. 261 (1990). 38. E 4. Joseph & Julia Quinlan, Karen Ann— the Quinlans Tell Their Story 36—38 {1977). - 37. J 5. Julia Duane Quinlan, My Joy, My Sorrow—- Karen Ann’s Mother Remembers 23—24 {2005}. ' 38. C 6. Joseph 8: Julia Quinlan, supra note 4, at 11. ' 39_ [ 7. Karen Ann Quinlan Memorial Foundation, History, www.karenannquinlauhospice.org/His- . that the “01 tory.l1trn [hereinafter History] {quoting Julia Quinlan) (last visited Mar. 7, 2008). I. 1 strong." Cc 8. Julia Quinlan, supra note 3, at 29. L, - . 40. J 9. Julia gave birth to a daughter (Mary Ellen) and a son (John) after adopting Karen. Id. at _ 41. J- 27—28. As the couple explained, "There is one thing that I am absoluterr sure of —you cannot force ' 42. C religion on your children . . . But we did expect each of the youngsters to be thoughtful, humane ' ' '. 43. I( - ' human beings, and they are. Karen was the most religions of the three." Joseph & Julia Quinlan, supra 44. C l note 4, at 54. 45. J1 i " 10. History, supra note 7; Phyllis Battelle, "Let Me Sleep” The Story of Karen Ann Quinlan, ' _ '. 46. I: > Ladies Home J., Sept. 1976, at 69. - _ 47. B I ll. Colby, supra note 1, at 285. 3 48. J: i 12. Frontline, The Death ofNancy Cruzau (PBS television broadcast Mar. 24, 1992) (transcript . ' 49. B ; available at http:l/www.pbs.org/wgbh/pages/frontline/programs/transcripts/ 1014.11tml). 1. _ i 50. C L 13. Id. 51. J( l 14. William H. Colby, The Long Goodbye: The Deaths of Nancy Cruzan 3—6, 79 {2002). 52. h: 15. hi. at 7, 11, 264—67. f_: New Jersey 16. Frontline, supra note 12, at 10. _ 53. C 17. Joseph & Julia Quinlan, supra note 4, at 1243. One individual who had been with Karen 54. In that night reported that she had used drugs, a report that Dr. Robert Morse, Karen's neurologist, _' 55- Bl . completely discounted. Id. at 14, 77, 169. Other news reports based on interviews with friends - 56. In l 7 describe Karen as having experimented with marijuana and “uppers” and "downers." A Life in H 57. C- the Balance, Time Mag, Nov. 3, 1975, available at http://www.iime.comfprintout/ 53. M . Clark, A as, tied in court that laboratory tests showed only aspirin, very Stevens, Th. cunts of barbiturate, and "traces" of Valitun but no "hard 3 Quinlan: The Complete Briefs, Oral Argiunents, and Opinion ' . J- Health Po 0,8816,913631,00.html. Morse testi small and "normal therapeutic" am i drugs." In the Matter of Karen Ann 1; in the New Jersey Supreme Court, vol. I, at 236 (1975} [hereinafter Complete Vol. I] {testimony of . ' 59. BE 2 Dr. Robert Morse). ‘ 60. St ‘ 18. Joseph 8: Julia Quinlan, supra note 4, at 79. - ' - 6]. Be ‘; 19. Battelle, supra note 10 at 70—71. 62. Jo ' 20. Id.; see also Complete Vol. 1, supra note 17, at 239 (testimony ofDr. Robert Morse). 63- Ct 21. The Other Side of “Persistent Vegetative State” (NPR radio broadcast Oct. 24, 2903} _ 54- Id (interview with Christy Cruzan White), available at http:l/wmv.npr.org/templates/story/ 65- Id. story.php?storyld:1477893. - 66. Id. it was safer than the van she had been ' '37- Mi 22. Her 1963 Rambler, a gift from her father who thought mnvmmhea ' l = ' .1 driving, did not have seat belts. Karen J. Donnelly, Cruzan v. Missouri: The Right to Die 8 (2903). '; 23. Id. at 9. 68. Fr 24. Colby, supra note 14, at 84). Estimates on the time until resuscitation range from 14 to 22 ‘ j' 69- Ur minutes. Donnelly, supra note 22, at 9. ' MOrehab; A 25. Colby, supra note 14, at 12. ' - ' W“’W.muhea ; 28. Frontline, supra note 12, at 2. - 70. Ce : , 2'7. Colby, supra note 14, at 22. _ _ 71. Id. ‘ 72. Id. 28. Id. Chapter 3: Quinlan and Cruzan t as lnost :. 29. The Other Side of“Persistent Vegetative State”, supra note 21. flict over 30. Colby, supra note 14, at 24, 27, 28. uch deCi_ ' 31. Brian Jennett 8: Fred Plum, Persistent Vegetative State Afier Brain Damage. A Syndrome in 3 Search ofa Name, 1 Lancet 734 (1972). I 32. Complete Vol. I, supra note 17, at 486 (testimony of Dr. Fred Plum); Classics in the Court- :lde such ' room: szan v. Director Missouri Department of Health 112 (1992) {hereinafter Classics] (testi— )t always I mony of Dr. James Dexter]. 33. Complete Vol. I, supra note 17, at 486 {testimony of Dr. Fred Plum). 34. Report ofthe Ad Hoc Committee ofthe Harvard Medical School to Examine the Definition of Brain Death, A Definition ofIi-reversibie Coma, 205 JAMA 337 (1968); Robert J. Joya-1t, A New Look at Death, 252 JAMA 680, 682 (1984) (noting that the use of the term "irreversible coma” for brain death was "meortunate”). 35. The pretrial order in Quinlan specified that one of the questions to he addressed was “what 37 Loy. U_ . I is or should he the legal definition of death" and "assuming the proof shows Karen Quinlan is legally dead, is the only relief cessation of the extraorciinary devices.” Complete Vol. 1, supra note 17, at 28—29 (pretrial order). 36. Battelle, supra note 10, at '71. heir own '), - ' 37. Julia Quinlan, supra note 5, at 4647. :4 (2005)_ 38. Colby, supra note 14, at 85. 39. Dr. Plum in his testimony refers to his colleague’s use of this phrase to account for the fact Lorg/His— that the "emotional impact of someone in a vegetative state opening the eyes is so overwhelmineg strong.” Complete Vol. 1, supra note 17, at 488 (testimony of Dr. Fred Plum}. . 40. Julia Quinlan, supra note 5, at 66, 40. en, Id_ at 41. Joseph 8; Julia Quinlan, supra note 4, at 251. not force 42. Classics, supra note 32, at 120, 102, 104, 108 (testimony of Dr. James Dexter). humane . 43. Id. at 56, 87—90 (testimony of Dr. Ronald Cranford}. an, Supra 44. Colby, supra note 14, at 281—82. 45. Julia Quinlan, supra note 5, at 41—43. Quhdan, 46. Id. at 43. 47. Battelle, supra note 10, at 70. 48. Joseph & Julia Quinlan, supra note 4, at 100—103. 3115“th _ 49. Battelle, supra note 10, at 71. 56. Complete Vol. 1, supra note 17, at 413 (testimony of Fr. Pascal Caccavale). - 51. Joseph & Julia Quinlan, supra note 4, at 72. I2)_ '. 52. in the Matter of Karen Quinlan: The Complete Briefs, Oral Arguments, and Opinion in the - New Jersey Supreme Court, vol. 11, at 40 (1976) [hereinafter Complete Vol. H] {plaintifi's’ exhibit Pv6). ' 53. Colby, supra note 14, at 40. ’1 Karen 54. Id. at 41. 'ofogjst‘ 55. Brophy v. New Eng. Sinai Hosp., 497 N.E.2cl 626 (Mass. 1986). 56. In the Matter ofJobes. 529 A.2d 434 (NJ. 1987). 57. Colby, supra note 14, at 46. :intout/ 58. Melvin D. Levin, Disconnection: A clinician's View, 6 Hastings Center Rep. 11 (1976) ; Matt nJ very 5 Clark, A Right to Die?, Newsweek, Nov. 3, 1975, at 58; Battelle, supra note 10, at 72; NH... Tina . "hard - Stevens, The Quinlan Case Revisited: A History of the Culture! Politics ofMedicine and the Law, 21 )pinion _ J. Health Pol. Pol'y 8: L. 347 (1996). mm. of 59. Battelle, supra note 10, at 72; Joseph & Julia Quinlan, supra note 4, at 118—19. - 60. Stevens, supra note 58, at 358; Battelle, supra note 20, at 72, 76. 61. Battelle, supra note 10, at 76. 62. Joseph & Julia Quinlan, supra note 4, at 126. 3 -- ' 53. Colby, supra note 14, at 21. I 64. Id. at 29. ’story/ _ 65. Id. at 61. _ 66. Id. at 40. :Zheen " 67. Missouri Rehabilitation Center, A Century of Progress, Phase II, available at http:// 3003)_ .' mmnmuhealth.org/MOrehab/history-2.shtnfl (last visited April 6, 2008). 68. Frontline. supra note 12, at 4. :to 22 -' 69. University of Missouri, Missouri Rehabilitation Center, http://www.nmhealth.org/ MOrellah; Missouri Rehabilitation Center, A Century of Progress, Phase DI, available at littp/l www.mnhealth.org/MOrehab/history3.shtinl {last visited Mar. 9, 2008). 70. Colby, supra note 14, at 46. 71. 1d. at 48. 72. Id. at 49. n Context 14 Health Law and Bioethics: Cases i 73. Fronth'ne, supra note '12, at 6. '74. Coiby, supra note 14, at 48. 75. Bit] Colby is now Senior Feiiow- Bioethics in Kansas City. Paul Armstrong litigate a trial judge in New Jersey. 76. Colby, supra note 14, at 67. 77. Id. at 64, 68-69. 78. Julia Quinlan, supra note 5, at 45-46. Others repo t to Let His Gravely Ill Daughter Die." See, e.g. , te 4, at 146. Legal High 79. Joseph 8: Julia Quinlan, supra no 5, at '75, 90-91, xv. 80. Julia Quinian, supra note 81. Joseph 8: Julia Quinlan, supra note 4, at 2T]. 82. Id. at 317—26. 83. Julia Quinlan, supra note 5, at 88. 84. Frontiine, supra note 12.. This comment can the written transcript. 85. Id. at 10,14. 86. Colby, supra note 14, at 75-76. 87. Joseph 8: Julia Quinlan, supra note 88. Battelle, supra note 10, at 174. 89. Fronth'ne, supra note 12, at 12—13. 90. 348 A.2d 801 (NJ. Ch. Ct. 1975). 91. Juiia Quinlan, supra note 5, at 63—64. 92. Quinlan, 355 A.2tl 647 (NJ. 1976). 93. Colby, supra note 14, at 236. 94. Id. at 236-42. 11, 760 S.W.2d 408, 426 (Mo. 1988). attle in Schiavo Case (NPR re lable at http:/fwwwmprpr such in 1998 to return to law practice. ents’ Rights at the Center for Practical Law and Pati nt euci-of-life cases and became :1 several subseque adline said "Father Seeks the rt that the he at 76. Battelle, supra note 10, be heard on the film itself. but is not includeti in 5, at 172. die broadcast Mar. 28, 2005) g/templatesfstory/story.plip? (interview with storylci:4563884. Robertson left the b 97. Cruzan, 497 U.S. 261 (1990). to 14, at 322; Cruzan, to 14 at 334-36. 497 U.S. at 283 (emphasis added). 99. Colby, supra no 100. id. at 333. 10!. Id. at 341. 102. See discussion supra notes 49 and 50. 103. Rev. Fr. Frank J. Rodimer, Bishop Emeri My Joy, My Sorrow—Karen Ann’s Mother Remembers, note 52, at 197 (Brief for the New Jersey Catholic Conference}. 104. 355 A241 647, 657 (NJ. 1976). 'us XII, Address to an International Congress of Anesthesiologists (Nov. 24, 1957]. ’01. 1, supra note 17, at 263 (testimony of Dr. Robert Morse, commenting on the 218 Quinlans' change in position). 106. See, e.g., Gerald Kelly, 3.5., The Duty to ProtectLy‘eflheologicalStudiesJan. 1950, at (asserting the permissibility of withdrawal). 107. Colby, supra note 14, at 240; Cruzan v. Harmon, amicus briefs). . 108. Briefi‘or SSM Health Care System et oi. as Anuci Curiae, Cruz Health, 497 U.S. 261 (1990) (No. 88—1503), 1989 “’1. 11152.45. Many-0 tiled briefs in Cruzan. For example, Agudath lsrael and Christian Advocates Serving g the State of Missouri, and the General Boar tus of Paterson, Foreword to Julie Quinton, at xi (2005); Complete Vol. [1, supra 760 S.W.2d 408 (Mo. 1933) (listing on v. Dir., Missouri Dep’t of titer religious organizations Evangelism filed (1 of Church and Society of the United Church in America filed briefs supporting the Cruzans. tes Catholic Conference as Anucus Curiae in Support of Respon- .S. 261 (No. 88-1503), 1989 W1. 1128124. 110. Brief for SSM Heaith Care System et a1. as Amici Curiae, United States Cathoiic Conference as Anticus Curiae, supra 11 111. Brief of the 112. Bro. Peter Campbell, CFX, Choices for the Journey 30 (1989). ' ' ' 58, 81 Health Progress 3 (May-Jtme 113. Rev. Thomas R. Kopfensteiner, D 2000), available at http:lfwww.chausa.orglPub/MainNav/I‘lP/Archive12000/05MayJun/ArticleS/ Features. 114. Id. supra note 108, at 6, 8. dents, Cruzan, 497 U ote 109, at 2. Chapter 3: Quinlan and Cruzon 115. Ethical and Religious Directives for Catholic Health Care, USCCB, 2001, available at http://W\srw.usccb.org/bishops/directives.slltmliiparlfive (noting that the question requires "further r Practical reflection”). The BEDS also note that there should be a presumption in favor of the provision of 1d became ' nutrition and hydration as long as there is sufficient benefit to outweigh burdens to the patient. 116. Pope John Paul 11, Address to the Participants in the International Congress on "Life-Sustaining Treatments and Vegetative State: Scientific Advances and Ethical Dilemmas” _ - (Mar. 20, 2004). ‘ 'Seeks the _' - 117. Congregation for the Doctrine of the Faith, Responses to Certain Questions ofthe United I States Conference of Catholic Bishops Concerning Artificial Nutrition and Hydration (Sept. 14, 2007). 118. See, e.g., Daniel P. Suhnasy, Preserving Life? The Vertical: and PVS, 134 Conunonweal, Dec. 7, 2007, available at hltp:l/www.commonweahnagazine.org/article.php3?id_fiarticle=2083; see also Ellen Horan, Vatican Aflirms Care Requirements for Patients in Persistent Vegetative States, Cath- -_ ,olic Health W'orld, Oct. 1, 2007 (describing reactions of Catholic health care leadership), available at icllldEd in http://www.chausa.orngub/MainNav Tews/C[WV/Arc]1ive/f2007/1001{Articles/wt)?1001c.htm. 119. Complete Vol. 1, supra note 17, at 245, 264 (testimony of Dr. Robert Morse). 120. Id. at 495 (testimony of Dr. Sidney Diamond, referenced in Quinlan, 355 A.2d 647, 657 (NJ. 1976)). 121. Quinlan, 355 A.2d at 657 (referring to “unwritten and unspoken standard of medical practice”) and (describing “judicious neglect”), 666—68 (describing the literature). 122. Joseph 8: Julia Quinlan, supra note 4, at 280 (noting negative responses from the American Medical Association (AMAD. 123. See generally Stevens, supra note 58. 124. Quinlan, 355 A.2d at 665. 125. Arthur Ceplflu, What Can M’e Learnfi'om the Schiavo Case?, Mar. 31, 2005, available at http://www.msnhc.msn.com/id/7289351/ (accusing organized medicine of “inexcusable silence") (last visited April 6, 2008). 58. 2005) 126. Joseph 8: Julia Quinlan, supra note 4, at 291. 3ry.php? 127. Id. 128. Julia Quinlan, supra note 5, at 61. 129. Id. at 106. 130. See, e.g., Battelle, supra note 10, at 180. 131. Julia Quinlan, supra note 5, at 104. 132 “[Y] on also don’t want to continue with aggressive care — the feeding tube and so on. “’8 refused to have a feeding tube in Karen. But she still lived for 10 years. . . ." End-of-Life Decisions, _ available at http://fathom.lib.uchicago.eduf2/10701024/ (comments by Julia Quinlan) (last visited Quinlan, _ Mar. 9, 2008). {1. supra 133. Anger in Hospital at a Death Order, N.Y. Times, Dec. 16, 1990. 134. Colby, supra note 14, at 364. 135. Id. at 350w51. a 1957). 136. Frontline, supra note 12, at 14. g on the _ 137. Colby, supra note 14, at 362—63. 138. Frontline, supra note 12, at 16. J, at 218 _ 139. Id. at 16. 140. Colby, supra note 14, at 361. {listing ' 141. Colby, supra note 1, at 236 11.22; Colby, supra note 14, at 380. 142,. Paul W'. Armstrong 8: 13.1). Cohen, From Quinlan to Jobs-s: The Courts and the PVS Patient, Dep't of J; 3 5 18 Hastings Center Rep. 37, 37 (1988) (describing Patricia Brophy’s experience). izations Hf. 143. Frontiine, supra note 12, at 12, 16—17. on filed -' ' 144. Id. Uniffll F _§§ 145. Julia Quinlan, supra note 5, at 60. :3 146. History, supra note 7. aeslmn‘ 147. Elizabeth Hendler, Julia Quinlan Says Growth of Hospice “Beyond my Vision," Daily Record, Mar. 24, 2005. I _- 148. Colby, supra note 14, at 393—94. . at 2. 149. Frontline, supra note 12, at 10. 150. Mo. Rev. Stat. §404.800 (2007). ly-June ' 151. Colby, supra note 14, at 394. cticles/ i ...
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Quinlan and Cruzan - Beyond the Symbols - Chapter 3 QUINLAN...

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