1975 – Karen Quinlan – Karen Ann Quinlan was a 21-year-old female who was celebrating a friend’s birthday at a bar, when she began to fall asleep [1]. Her friends brought her home. When they realized that she was not breathing, they gave her mouth-to-mouth resuscitation and called an ambulance [1]. She arrived at Newton Memorial Hospital on April 15, 1975, was placed on a ventilator, and subsequently developed pneumonia [1]. After five months and a fifty-pound weight loss, Karen was still on the ventilator. Her adoptive parents sought legal help to withdraw the ventilator [1, 2]. Karen had irreversible brain damage and would never recover. Her parents agreed with the religious advice of Pope Pius XII, from his 1957 pronouncement, that there is no moral obligation to maintain life via “extraordinary means” [1]. Karen’s parents signed a form authorizing the attending physician to withdraw the ventilator [1]. The medical team decided not to withdraw the ventilator. The Quinlans then asked the court to declare Karen incompetent and appoint her father, Joseph, as her guardian so that he could order the withdrawal of the ventilator [1]. The court took the petition on October 20, 1975 and a Morris County New Jersey (NJ) Superior Court Judge appointed a public defender to watch out for Karen’s interests [1, 2]. The NJ Superior Court rendered a decision on November 10, 1975 denying Karen’s father to be appointed her guardian so he could authorize the withdrawal of the ventilator [2, 3]. The NJ Supreme Court rendered a unanimous decision written by Chief Justice Richard J. Hughes (announced March 31, 1976), which overturned the NJ Superior Court ruling and ruled in the Quinlan’s favor [3]. The NJ Supreme Court ruled in favor of the constitutional right of privacy with a patient’s right to decline medical treatment in certain circumstances, and permitted this right of privacy to be exercised by proxy using substituted judgment (in this case by Karen’s father) [3]. The court added two qualifications to the exercise of the right of privacy by proxy including: (1) a prognosis by the attending physicians and (2) concurrence in the prognosis by an “ethics committee” [3]. The NJ Supreme Court also applied an “ordinary-extraordinary” distinction as mentioned above by Pope Pius XII [3], and found no difference between terminating artificial nutrition and hydration and discontinuing a mechanical ventilator [4]. After withdrawal of the ventilator, Karen Quinlan continued to breath on her own for 9 years and died June 11, 1985 of pneumonia.

In re Quinlan, 70 NJ 10, 355 A. 2d 647, cert denied, 429 US 922 (1976)

1983 – Claire Conroy was an 83-year-old female who lived in a nursing home in New Jersey for three years with “organic brain syndrome”. She later developed diabetic necrotic decubitus ulcers on her left foot and was transferred to the hospital on July 21, 1982 where doctors recommended an above the knee amputation of her left leg [4–6]. Her guardian (her nephew) refused to give consent for the amputation and later demanded that Claire Conroy’s nasogastric feeding tube be removed. However, her physicians refused to remove the feeding tube, so the guardian petitioned the court for the authority to remove it [5, 6]. At that time, Claire Conroy weighed 50 pounds and was unable to speak. After the court proceedings, Judge Stanton (who had visited the patient) ordered removal of the feeding tube on February 2, 1983 (In re Conroy, 188 N.J. Super. 523 [Ch. Div. 1983]); however, his decision was held, pending appeal [5, 6]. On February 15, 1983, the patient died with the nasogastric tube still in place [5]. On July 8, 1983, the New Jersey appellate court reversed the lower court’s decision [5]. The appellate court opinion read: “The trial judge authorized euthanasia … If the trial judge’s order had been enforced, Conroy would not have died as the result of an existing medical condition, but rather she would have died, and painfully so, as the result of a new and independent condition: dehydration and starvation. Thus she would have been actively killed by independent means” [5]. The guardian ad litem then brought the case to the NJ Supreme Court, who in January 1985 declared that terminating any medical treatment, including artificial nutrition and hydration, on incompetent patients is lawful if certain criteria are met [4]. As a result, it is now widely accepted legally and in medical ethics, that artificial nutrition and hydration are medical interventions that can be withheld or withdrawn in the same manner as any other medical intervention (see also Cruzan below).

In the matter of Claire Conroy, Sup Ct. N.J. App. Div., A-2483-82, July 8, 1983; 486 A.2d 1209 (1985)

1990 – Nancy Cruzan – Nancy Beth Cruzan was in a motor vehicle collision in January 1983 [7]. She was in a persistent vegetative state after the accident and was maintained on artificial nutrition and hydration via a gastrostomy tube inserted with the consent of her husband [7]. Nancy’s parents sought to end her tube feedings, being convinced that she would not want to continue living in a persistent vegetative state [7]. A Missouri trial court authorized the withdrawal of Nancy Cruzan’s artificial nutrition and hydration, but this decision was overturned in November 1988 by the Missouri Supreme Court [7]. The Missouri Supreme Court argued that the state had an “unqualified” interesting in preserving life which should supersede the right of guardians to refuse treatment in the absence of “clear and convincing evidence” that this would be the patient’s wish [7, 8]. Cruzan became the first “right to die” case heard by the United States (US) Supreme Court, which rendered its decision in June 1990 [7, 8]. The US Supreme Court affirmed the Missouri Supreme Court’s decision, but established at least three important holdings [8]. First, there is a constitutional right to refuse treatment based on a protected “liberty interest” [8, 9]. Second, the right to refuse treatment persists despite a patient becoming incompetent [8]. Third, states may create different procedural safeguards and standards of evidence to ensure that withdrawal of treatment reflects the patient’s wishes when the patient lacks the capacity to make medical decisions [8]. Finally, Justice Sandra Day O’Connor wrote a concurring opinion in Cruzan with four other members of the Supreme Court stating, “artificial feeding cannot readily be distinguished from other forms of medical treatment” [9]. After testimony by witnesses that withdrawing artificial nutrition reflected Nancy Cruzan’s wishes, artificial nutrition and hydration were withdrawn in December 1990. Nancy Cruzan died two weeks later.

Cruzan v. Harmon, 760 S. W. 2d 408 (1988)

Cruzan v. Director, Missouri Dept of Health, 110 S. Ct. 2841, 497 US 261 (1990)

US Supreme Court decision 1990

1991 – Helga Wanglie was an 85-year-old female patient residing in a nursing home. On January 1, 1990, she was transferred to Hennepin County Medical Center with complaints of dyspnea. At the medical center, Helga Wanglie was intubated, she was placed on a ventilator, and she remained in a persistent vegetative state for over a year [10, 11]. Physicians recommended stopping mechanical ventilation suggesting that it was “nonbeneficial” [11]. The hospital went to court after Steven H. Miles, MD, the ethics committee consultant at the Hennepin County Medical Center who evaluated the patient, and the medical director and hospital administrator petitioned to get permission to withdraw treatment [10, 11]. The patient’s husband, daughter, and son successfully asserted that substituted judgment about the patient’s view of what constitutes appropriate medical intervention should take precedence over the medical team’s view that mechanical ventilation was not beneficial [10, 11]. Helga Wanglie subsequently died of sepsis on July 4, 1991 [10, 11]. The court decision occurred 3 days prior to her death [10]. This case created the legal hierarchy of authority regarding medical decision making so that the patient and his or her next of kin or a designated health proxy take precedence over the physician’s recommendation [10].

In re Helga Wanglie, Fourth Judicial District (Dist. Ct., Probate Ct. Div.) PX-91-283. Minnesota Hennepin County.

1993–1994 – Baby K– Baby K was diagnosed prenatally with anencephaly and pregnancy termination was recommended by both the obstetrician and neonatologist [12]. Nonetheless, Baby K was born by cesarean section on October 13, 1992 [12]. Baby K had difficulty breathing at birth, was intubated, and mechanical ventilation was begun [12]. Within days of the birth, the physicians urged the mother (since the father was only remotely involved) to discontinue mechanical ventilation because it was medically inappropriate and to place a Do Not Resuscitate order, but the mother refused [12]. The hospital ethics committee and a subcommittee became involved, and the subcommittee decided on October 22 that if the difference of opinion continued, the hospital should seek legal resolution [12]. Baby K was transferred to a nursing home on November 30 not on mechanical ventilation. On January 15, 1993, Baby K returned to the hospital for mechanical ventilation and stayed until February 12 [12]. Fairfax Hospital went to federal court to seek a ruling that they were not obligated to provide “inappropriate” treatment if Baby K were to return to the emergency department in respiratory distress [12]. The mother argued that “all human life has value,” whereas the hospital, the guardian ad litem appointed by the court, and Baby K’s father all thought that further mechanical ventilation was medically and ethically inappropriate [12]. District Court Judge Claude Hilton used the Emergency Medical Treatment and Active Labor Act (EMTALA), section 504 of the Rehabilitation Act, and the Americans with Disabilities Act to argue that hospitals cannot discriminate against anencephalic infants who present with an emergency medical condition such as respiratory distress and must provide treatment [12].

Furthermore, when there is no “finding of neglect or abuse,” parents have the right to make medical decisions for their children, and when parents disagree, courts should support the parent who decides “in favor of life” [12]. On February 10, 1994, the US Court of Appeals, in a two-to-one opinion, affirmed Judge Hilton’s ruling, arguing the EMTALA did not provide an exception for anencephalic infants and required continued mechanical ventilation for Baby K [12]. Baby K died April 5, 1995 at the hospital.

In re Baby K, 832 F. Supp. 1022 (E.D. Va. 1993), 16 F. 3d 590 (4th Cir. 1994

1995 – Gilgunn v. Massachusetts General Hospital – Catherine Gilgunn was a 71-year-old female who fell in her home in mid-May 1989, but only presented to Massachusetts General Hospital (MGH) on June 7, 1989 with a diagnosis of a recurrent left hip fracture [13, 14]. Nine days into her hospitalization, Catherine experienced multiple seizures that left her comatose [13, 14]. Dr. Cassem, who directed MGH’s optimal care committee (MGH’s ethics committee), issued a do not resuscitate (DNR) order, which was withdrawn after the patient’s daughter Joan Gilgunn objected. Catherine had a tracheostomy and a gastrostomy tube placed with the family’s consent [15]. After obtaining approval from MGH’s optimal care committee and assuming care of Catherine, a month later Dr. Dec reinstated the DNR order for Catherine [13, 15]. Dr. Dec had begun weaning the ventilator support provided to Catherine starting on August 7, Catherine was extubated, and she was placed on CPAP for more than ten hours [13, 14, 16]. Catherine Gilgunn died three days after Dr. Dec placed the DNR order on August 10 1989. Joan Gilgunn claims she was never told of the second DNR order, although two of her four siblings agreed with the hospital’s decision [13]. Joan Gilgunn then sued Dr. Cassem and Dr. Dec, seeking damages for the mental anguish that she suffered because her mother’s wishes were not followed [13]. Judge David Roseman presided over the Suffolk Superior Court that vindicated Dr. Cassem and Dr. Dec, where the jury found that although Catherine Gilgunn would have wanted treatment continued, such care was ultimately “futile” [13]. This case ruled that cardiopulmonary resuscitation need not be provided to a patient dying with multiple organ system failure, even if requested by the patient’s family, since CPR is ineffective in these circumstances and would cause harm [15]. However, this ruling did not create a legal precedent since it was only a jury verdict, was not heard at an appellate level, and the plaintiff withdrew her appeal on January 21, 1998 [15].

Gilgunn v. Massachusetts General Hospital, Super. Ct. Civ. Action No. 92–4820, Suffolk Co., Mass., verdict, 21 April 1995

Joan Gilgunn v. Massachusetts General Hospital, et al. Massachusetts Appeals Court case no. 97-P-2150

1995 – Baby Sun Hudson – Baby Sun Hudson was a full-term baby born with thanatrophic dysplasia, which is a lethal genetic condition [17]. The condition is characterized by underdeveloped lungs, small ribs, and a narrow small chest [17]. The mother had not received prenatal care, the physicians were unaware of the fetus’ medical status at birth, and thus the physician’s resuscitated the newborn at delivery [17]. Once the diagnosis was made, the physicians recommended withdrawal of treatment but the mother refused [17]. The mother had a psychiatric history and claimed that the “Sun” fathered her child [17]. The doctors felt that continued treatment was inhumane because the infant was “slowly suffocating because his lungs lack the capacity to support his body” [17]. The hospital invoked the Texas Advance Directives Act of 1999 (see chapter for more details), and some 40 hospitals declined to accept the child in transfer [17]. Texas Children’s Hospital was reluctant to unilaterally withdraw treatment given the mother’s questionable mental status, and so sought legal resolution [17]. A Harris County Probate judge ruled that Texas Children’s Hospital had no obligation to continue medical treatment. However, the ruling was appealed and the First Texas Court of Appeals in Houston sent the case back to the probate judge on a procedural question [17]. That issue was resolved and the probate judge again ruled that the hospital could withdraw treatment, which occurred nearly 6 months after Sun Hudson’s birth [17]. Sun Hudson died moments later [17].

Hudson v. Texas Children’s Hospital. Court of Appeals of Texas, Houston (1st Dist.). No. 01-05-00143-CV. March 1, 2005.