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The Uncommon Case of Jahi McMath John M. Luce, MD, MSL
A 13-year-old patient named Jahi McMath was determined to be dead by neurologic criteria following cardiopulmonary arrest and resuscitation at a hospital in Oakland, California. Her family did not agree that she was dead and refused to allow her ventilator to be removed. The family’s attorney stated in the media that families, rather than physicians, should decide whether patients are dead and argued in the courts that the families’ constitutional rights of religion and privacy would be violated otherwise. Ultimately, a judge agreed that the patient was dead in keeping with California law, but the constitutional issue was undecided. The patient was then transferred to a hospital in New Jersey, a state whose laws allow families to require on religious grounds that death be determined by cardiopulmonary criteria. Although cases such as this are uncommon, they demonstrate public confusion about the concept of neurologic death and the rejection of this concept by some families. The confusion may be caused in part by a lack of uniformity in state laws regarding the legal basis of death, as reflected in the differences between New Jersey and California statutes. Families who reject the determination of death by neurologic criteria on religious grounds should be given reasonable accommodation in all states, but society should not pay for costly treatments for patients who meet these criteria unless the state requires it, as only New Jersey does. Laws that give physicians the right to determine death by neurologic criteria in other states probably can survive a constitutional challenge. Physicians and hospitals faced with similar cases in the future should follow state laws and work through the courts if necessary. CHEST 2015; 147(4):1144-1151 ABBREVIATIONS:
CHO 5 UCSF Benioff Children’s Hospital Oakland; UDDA 5 Uniform Determination
of Death Act
Most families of patients who are determined to be dead by neurologic criteria in the ICU accept the diagnosis given them by physicians and other health professionals. As a result, the families commonly agree that mechanical ventilation and other kinds of medical support can be withdrawn from the patients, unless it is continued temporarily until their organs can be donated. Occasionally, however, families do not
Manuscript received September 8, 2014; revision accepted October 31, 2014. AFFILIATIONS: From the University of California, San Francisco; and the Division of Pulmonary and Critical Care Medicine, San Francisco General Hospital, San Francisco, CA. CORRESPONDENCE TO: John M. Luce, MD, MSL, Division of Pulmonary and Critical Care Medicine, San Francisco General Hospital, 1001
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agree that the patients are dead, seek legal restraint to prevent physicians from discontinuing treatment, and bring lawsuits alleging professional negligence against them.1 In this article, I review the well-publicized case of a teenager determined to be dead by neurologic criteria whose family and attorney objected to the California law allowing such determination. I also discuss the legal and,
Potrero Ave, Room 5 K1, San Francisco, CA 94110; e-mail: jluce@ medsfgh.ucsf.edu © 2015 AMERICAN COLLEGE OF CHEST PHYSICIANS. Reproduction of this article is prohibited without written permission from the American College of Chest Physicians. See online for more details. DOI: 10.1378/chest.14-2227
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in particular, constitutional implications of the case and make recommendations about how such cases should be dealt with in the future. I do not discuss the medical and legal validity of the neurologic death standards, a topic that merits a review of its own.
The Case The Patient
Jahi McMath was a 13-year-old obese black girl who underwent an adenotonsillectomy, uvulopalatopharyngioplasty, and submucous resection of bilateral inferior turbinates on December 9, 2013, for the treatment of OSA. The procedure took place at Oakland Children’s Hospital and Research Center in Oakland, California, which has been known as the UCSF Benioff Children’s Hospital Oakland (CHO) since its affiliation with the University of California, San Francisco, in 2014. After surgery, Jahi was transferred to the pediatric ICU for observation. There, in the presence of her mother, Latasha “Nailah” Winkfield, she suddenly started bleeding from her nose and mouth and suffered a cardiopulmonary arrest.2 Jahi’s spontaneous circulation was restored by cardiopulmonary resuscitation, and she was placed on a mechanical ventilator to support her breathing. She received IV fluids and was cared for by a number of CHO physicians. Despite aggressive treatment, she did not regain consciousness. On December 11, the chief of neurology at CHO determined that Jahi was dead by neurologic criteria, and an EEG of her brain showed no electrical activity. The following day, a second CHO physician affirmed that Jahi was dead by neurologic criteria.3 After making the diagnosis, Jahi’s physicians told Winkfield and other family members that Jahi met the neurologic criteria for death. They said that although she appeared to be breathing on the mechanical ventilator, she did not do so on her own during apnea testing. They explained that although Jahi’s heart was beating, it could not do so indefinitely. Furthermore, although her extremities might move, this movement was reflexive. In keeping with hospital policy and state law, the family was approached for organ donation by the Northern California Transplant Donor Network.4 Despite lengthy discussions with Jahi’s physicians, her family did not believe that Jahi was dead. Jahi’s mother and her uncle, Omari Sealey, could not understand why Jahi had arrested after what they perceived as a simple tonsillectomy and blamed both the physicians and CHO. The family did not want Jahi to be a donor
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and requested that she remain on the ventilator for as long as possible, at least through Christmas. On the afternoon of December 15, Winkfield and other family members were informed that Jahi would be removed from the ventilator the following morning pending the arrival of a family member who was traveling.4 That evening, however, Jahi’s uncle contacted a San Francisco plaintiff attorney named Christopher Dolan. Dolan reviewed Jahi’s case and the law relevant to it and agreed to represent the family on a pro bono basis. In the early morning of December 16, he e-mailed a cease-and-desist order to CHO. Later that day, he and Jahi’s family met with physicians and administrators at CHO, who agreed to continue mechanical ventilation temporarily.5 The Battle in the Media
After the meeting, Dolan and the family held the first of what were to become regular press conferences at the hospital. Dolan told reporters, “The family believes (Jahi) is alive. It is our position that no doctor can make a determination about end of life without parental consent.”6 Winkfield said, “I can feel my daughter,” and alleged that the hospital wanted to use her bed for other patients.7 Sealey insisted that CHO wanted to remove Jahi’s ventilator to avoid paying for economic damages resulting from a possible malpractice lawsuit, presumably assuming she was still alive.8 After the press conference on December 17, CHO issued a statement saying, “Our hearts go out to the patient and her family. Unfortunately, we have not been authorized by the family to share information with the public about this matter. Consequently, we are not able to correct misperceptions created in this sad situation. Nevertheless, we want to assure the community that we are doing everything in our capacity to provide support for the grieving family.”9 The media coverage was intense that day and in the weeks to follow because Jahi’s story was so compelling. The story also was largely played out during Christmas and New Year’s, when other dramatic news events were scarce. Dolan was experienced in dealing with reporters; Jahi’s family was large, passionate, and black. CHO, on the other hand, was represented by cautious administrators and physicians, almost all of them white. They were restrained by the Health Insurance Portability and Accountability Act from revealing medical details about Jahi, and seemed insensitive because they refused to continue supporting her.
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Eventually, CHO called in Sam Singer, a San Francisco public relations expert, to speak for it before the media. Singer continued to stress that the hospital and its physicians had acted responsibly, were concerned about Jahi’s welfare and that of her family, and were not worried about a malpractice suit. Furthermore, Singer stated, “The family attorney is perpetuating a tragic hoax on the public as well as misleading the family. Jahi McMath is deceased…No amount of time, no amount of surgery, and no amount of hope will bring her back.”10 The Legal Fight
On December 20, Dolan filed a motion on behalf of Winkfield in the Alameda County Superior Court for a temporary restraining order that would enjoin CHO from removing Jahi from the ventilator and compel it to perform a tracheostomy and install a feeding gastrostomy.11 Dolan also requested that Jahi be evaluated by a third physician not associated with the hospital. He proposed Paul Byrne, an Ohio pediatrician who does not support the concept of brain death.12 On December 23, Superior Court Judge Evilio Grillo agreed to an outside evaluation, although he did not appoint Byrne. Instead, he appointed Paul Fisher, chief of child neurology at Stanford University’s Lucille Packard Hospital. Fisher examined Jahi in Dolan’s presence and affirmed that she was dead by neurologic criteria; cerebral blood flow testing performed under Dolan’s observation corroborated the diagnosis. On December 24, Grillo ruled that Jahi was dead under California law. He granted the injunction to maintain Jahi on the ventilator and to continue IV fluids until December 30, 2013, but did not order that a feeding tube be placed.13 Judge Grillo’s decision afforded Jahi’s family additional time to find another facility willing to care for her. Winkfield had already established an internet fund to raise money for her daughter’s transportation to and further treatment at such a facility, which the Terri Schiavo Life & Hope Network was helping the family to find.14 Meanwhile, Dolan told the media that several hospitals, including some in California, would accept Jahi in transfer. However, these facilities would require that she receive a tracheostomy and a percutaneous gastrostomy beforehand.15 On December 30, 2013, on behalf of Winkfield, Dolan sought an injunction through the California Court of Appeal for the Second District to maintain Jahi on the ventilator and to have a tracheostomy and feeding tube placed. In his motion, Dolan argued that California Health and Safety Code Section 7180, the state’s Uniform 1146 Medical Ethics
Determination of Death Act (UDDA), which allows the determination of death by neurologic criteria, violated Jahi’s mother’s rights of religious freedom and privacy guaranteed by the California Constitution.16 In his motion, Dolan said that Winkfield was exercising her religious freedom in believing that Jahi was not dead and in wanting to make that determination for her. He also noted that the right of competent adults or their surrogates to refuse treatment was established by the California Supreme Court in its Bartling v Superior Court decision.17 He then opined, “The court must agree that if a person (or his or her surrogate) has a constitutional right to end their life (by refusing treatment) they have an equal, if not greater right to undertake measures to prolong their life.”16 Also on December 30, Dolan sought injunctive relief from the United States District Court for the Northern District of California on similar US constitutional grounds.18 In opposition to Dolan’s motion, attorney Douglas Strauss, representing CHO, submitted a motion in which he agreed that Jahi’s mother had a constitutional right to believe that her daughter was not dead. “However,” he said, “plaintiff has no constitutional right to insist that the United States medical-legal system honor her religious belief and treat a dead person as if she remained alive.”19 On January 3, 2014, before Dolan’s and Strauss’s motions could be heard in federal court, the parties appeared before Judge Grillo in connection with plaintiff’s parallel state action, and reached an agreement that CHO could release Jahi’s body to the Alameda County coroner. At this point, the prior motions to the state and federal courts were rendered moot and they were dismissed.20 As a result, the issue of whether Jahi’s mother’s constitutional rights of freedom of religion and privacy were being violated was not decided. Jahi’s family accepted responsibility for her body the evening of January 5, 2014, when Jahi was moved to an undisclosed care facility, where a tracheostomy and feeding tube were placed. That same day, the Alameda County coroner issued a death certificate indicating that Jahi died on December 12, 2013, the day she was determined to be dead by neurologic criteria for the second time at CHO. The coroner did not state the cause of death, however; as part of the agreement between the family and the coroner’s office, Jahi’s body was to be returned, possibly for autopsy, after she was declared dead, presumably by cardiopulmonary criteria, in the facility in which she was placed.21
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Recent Events
On March 13, the California Department of Public Health stated that CHO had followed governmental standards in its treatment of Jahi and 28 other patients recently treated at the hospital. The hospital cheered this statement, but Dolan regarded it as an example of “the fox guarding the henhouse” and said that the family would pursue a civil action.22 On March 27, Jahi’s mother, uncle, and other family members were guests of honor at the Terri Schiavo Life & Hope Network’s Second Annual Awards Gala in Philadelphia, Pennsylvania, where Mrs. Winkfield said that her daughter’s clinical condition had improved.23 On June 20, Jahi was reported to be in the pediatric ICU of St. Peter’s University Hospital System in New Brunswick, New Jersey. Whether Jahi’s hospital costs were being met by the hospital, by Medicaid, or by supporters such as the Terri Schiavo Life & Hope Network was unclear. Dolan would not confirm where Jahi was hospitalized, but he did say that she had improved so much she might be moved to another facility. He also said that her family was not opposed to further brain function testing and that it “may show something different than when Jahi was under the most acute stress of swelling of the brain and lack of food and nutrition.”24 “I think the public deserves an answer,” Sam Singer, CHO’s public relations spokesperson, responded in the media. “It’s not fair to tug at people’s heartstrings and make false claims like this without being able to back them up. The news media, independent physicians and the medical community ought to be allowed in, so they can make a judgment for themselves as to whether this is the greatest miracle known to man, or this is a hoax. Sadly, I think this is a hoax.”24 On September 30, Judge Evilio Grillo of the Alameda County Superior Court held a case management conference at which Christopher Dolan requested a hearing during which he would present evidence that Jahi, who currently was being cared for in a private residence, was not in fact dead by neurologic criteria.25 The evidence, presented by Dolan at a press conference on October 2, included video clips showing Jahi moving her hands and feet purportedly in response to her mother’s commands. Dolan’s evidence also included MRI and EEG studies suggesting that Jahi had measurable brain activity, according to Philip DeFina, chief executive officer of the International Brain Research Foundation in New Jersey. DeFina, who is not a physician, had not perjournal.publications.chestnet.org
formed a clinical evaluation of Jahi. The press noted that if Judge Grillo found this evidence compelling, Jahi “could be returned to her home in California, with the costs to care for her shifted to the state and possibly UCSF Benioff Children’s Hospital in Oakland.”26 On October 6, the media reported that Paul Fisher, the Stanford child neurologist originally appointed by Judge Grillo to evaluate Jahi, had written a letter to the judge stating that none of the evidence provided by Dolan altered his opinion that Jahi was dead by neurologic criteria. Fisher also noted that the MRI and EEG studies (which are not required by California law to determine death by neurologic criteria and traditionally have been used only to corroborate the diagnosis but not to refute it) were irrelevant. In turn, Dolan requested that the hearing he had requested previously, which was scheduled for October 9, be postponed because DeFina and other members of his “team of international brain death experts” needed time to review Fisher’s letter.27
Legal Implications Legal Basis of Death
The 1980 UDDA was developed with the assistance of the American Medical Association and the American Bar Association to provide a unitary definition of death across the United States that would incorporate the concept of determining death by neurologic criteria and sanction organ donation from people who met those criteria. As of 2007, 14 states and the District of Columbia had adopted the UDDA as written; 18 had adopted a modified version of the Act; 14 had written their own statutes; and four had not adopted legislation but had incorporated the concept of determining death by neurologic criteria in case law or regulations.28 California Health and Safety Code Section 7180, the state’s UDDA, defines death as “either (1) irreversible cessation of circulatory and respiratory functions, or (2) irreversible cessation of all functions of the entire brain, including the brain stem. A determination of death must be made by acceptable medical standards.”29 Section 7181 requires, “When an individual is pronounced dead by determining that the individual has sustained an irreversible cessation of all functions of the entire brain, including the brain stem, there shall be independent confirmation by another physician.”30 Section 1254.4 of the Health and Safety Code mandates, “A general acute care hospital shall adopt a policy for providing family or next of kin with a reasonably brief period of accommodation…from the time that a patient 1147
is declared dead by reason of irreversible cessation of all functions of the entire brain, including the brain stem… through discontinuation of cardiopulmonary support of the patient. During this reasonably brief period of accommodation, a hospital is required to continue only previously ordered cardiopulmonary support. No other medical intervention is required. For purposes of this statute, a ‘reasonably brief period’ means an amount of time afforded to gather family or next of kin at the patient’s bedside.”31 Section 1254.4 also mandates, “If the patient’s legally recognized health care decision-maker, family, or next of kin voices any special religious or cultural practices and concerns of the patient or the patient’s family surrounding the issue of death by reason of irreversible cessation of all functions of the entire brain of the patient, the hospital shall make reasonable efforts to accommodate those religious and cultural practices and concerns. For purposes of this section, in determining what is reasonable, a hospital shall consider the needs of other patients and prospective patients in urgent need of care.”31 Although California statutes require only that physicians and hospitals accommodate religious and cultural practices and concerns, New York and New Jersey allow families to reject the concept of determining death entirely by neurologic criteria. New York, for example, mandates that hospitals develop “a procedure for the reasonable accommodation of the individual’s religious or moral objection to the determination,” which may include “the continuation of artificial respiration under certain circumstances.”32 However, New York does not require accommodation for those with objections based “solely on the psychological denial that death has occurred or on an alleged inadequacy of the brain death determination.”32 Nor does that state mandate payment for the continued treatment of patients who meet neurologic criteria for death. New Jersey law states, “The death of an individual shall not be declared on the basis of neurological criteria… when the licensed physician authorized to declare death, has reason to believe…that such a declaration would violate the personal religious beliefs of the individual. In these cases, death shall be declared…solely on the basis of cardio-respiratory criteria.”33 Furthermore, unlike the legal situation in New York, in New Jersey no payer “shall deny coverage or exclude from the benefits of service and individual solely because of that individual’s personal religious beliefs regarding the application of neurological criteria for declaring death.”33
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Constitutional Issues
The New York and New Jersey laws allowing families to object to the determination of death by neurologic criteria were developed to accommodate Orthodox Jews, who believe that death occurs when the soul leaves the body, which coincides with the cessation of breathing and heartbeat.34,35 Christopher Dolan sought a similar accommodation for Jahi McMath and her family in arguing that California Health and Safety Code Section 7180 violated their rights of religious freedom and privacy. Dolan did not offer a detailed argument in his motions to the state and federal courts, and such an argument is not available in the legal literature. Nevertheless, the constitutional implications of what might be Dolan’s position have been explored by Rachel Delaney in a research paper for the Marquette University Law School published before Jahi McMath’s case.36 Delaney’s thesis is that all 50 states should adopt the UDDA with a religious exception similar to that of New York and New Jersey. Delaney argues that, without such a religious exception, the UDDA unfairly burdens Orthodox Jews by denying them the opportunity to die in accordance with the cardiopulmonary definition of death under Jewish law. In addition, she believes that requiring a neurologic death standard also violates Orthodox Jews’ fundamental right to privacy. Citing Planned Parenthood of Southeastern Pennsylvania v Casey, in which the US Supreme Court said that “at the heart of liberty is the right to define one’s own concept of existence,”37 she claims that “privacy in death determinations should be considered a fundamental liberty necessary for accomplishing the American ideal of allowing the free exercise of religion.”36 In addition, Delaney opines that no compelling state interests are burdened by the cardiopulmonary death standard. She acknowledges that the UDDA promotes a state interest in standardizing the definition of death across the United States and thereby preventing confusion and conflicts arising from citizens being declared dead in one state and not in another. At the same time, however, she argues that making a religious exception to this uniform definition would not be significantly disruptive because it would only apply to a small number of Orthodox Jews. The same argument of limited disruption would apply to the state’s interest in preserving life through organ transplantation and in promoting hospital efficiency and financial solvency.36
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Regarding the last point, Delaney argues that the New York law (she does not mention New Jersey here) is not unduly onerous to hospitals from a logistical standpoint. “Moreover, the New York law does not burden hospitals with the excessive costs of maintaining patients who meet the standard for brain death but do not meet the standard for cardiac death.”36 This is both because patients determined to be dead by neurologic criteria cannot be maintained indefinitely on the ventilator, and because few families, presumably only Orthodox Jews, would exercise the religious exception. Jahi McMath’s case serves as a reminder of the limitations of Delaney’s arguments for a widespread religious exception for the UDDA. Jahi’s family appears to have sincere religious beliefs, although what their religion is and what its attitudes are regarding brain death have not been clarified. Given the apparent sincerity of their beliefs, it could be argued that their right to exercise those beliefs is burdened by the lack of a religious exception in California’s UDDA. Nevertheless, the UDDA was not drafted specifically to burden a religious person or group. Rather, in the US Supreme Court language in Employment Division, Department of Human Resources v Smith,38 the UDDA is “a neutral law of general applicability,” similar to laws preventing polygamy or requiring that all Americans pay Social Security taxes. It is also rationally related to legitimate governmental interests. As such, the UDDA is not unconstitutional for failing to provide a religious exception according to the standards established in Smith. Given its recent decision in Burwell v Hobby Lobby,39 whether the court will maintain this standard is unclear. Delaney supports her argument that “privacy in death determinations should be considered a fundamental liberty” primarily from two US Supreme Court cases: Casey, mentioned earlier, and Griswold v Connecticut.40 In the latter case, the court characterized privacy as a fundamental right contained within the “penumbra” of the fifth, ninth, and 14th Amendments. Yet the “penumbra” theory has since been abandoned by the court. Furthermore, the court has never said—in Casey, Griswold, or any other case—that families have a constitutional right to determine when death occurs, or to insist that patients be kept “alive” after the state has declared them dead. Dolan’s opinion that patients and families may request prolonged treatment because they have a constitutional right of privacy in refusing treatment is also legally problematic. In Cruzan v Director, Missouri Department of Health, the US Supreme Court grounded the liberty journal.publications.chestnet.org
interests of patients in refusing treatment not in privacy but in the common law right against battery, or unwanted touching.41 And although patients and families may have a “negative” right to refuse treatment under Cruzan, the court has never granted them an affirmative right to treatment on demand. In terms of state interests, Jahi’s case illustrates that the lack of uniformity in state laws regarding the religious exception to determination of death by neurologic criteria can cause both confusion and conflict when a patient is considered dead in one state and not in another. Furthermore, although cases such as Jahi’s are uncommon, in that most families accept neurologic death and its implications, her case suggests that not only Orthodox Jews, but also families of other organized religions and personal faiths, may request a religious exception to the neurologic death standard if it were more widely available. What the number of these families might be is unknown. No data are available regarding how many families have already sought a religious exception to the determination of death by neurologic criteria in New York, New Jersey, or other states. Data are also not available concerning the impact of Jahi McMath’s case on organ donation and transplantation. Nevertheless, in recent months, at San Francisco General Hospital, the families of two patients determined to be dead by neurologic criteria have rejected this diagnosis and refused organ donation, citing Jahi’s case. If cases like these and Jahi’s become more common, the increased granting of religious exceptions might well decrease the number of organ donations and adversely impact the state’s interest in preserving life through organ transplantation. Of course, organ donations might decrease even more if Jahi is proven to not be dead by neurologic criteria, as Dolan believes will be the case. Widespread legislative adoption of a religious exception to the UDDA would be much more costly to hospitals and to society than Delaney believes. This cost would result not only from the increased number of neurologically dead patients being treated but also from the length of treatment that would be required. Although many patients suffer cardiopulmonary death shortly after they are determined to be dead by neurologic criteria, a substantial number of these patients, especially young ones, have been maintained on mechanical ventilators for months and, in some cases, years.42 Most of these patients are probably cared for at home or in long-term care facilities after they leave the ICU, as is the case with Jahi. Nevertheless, wherever they are cared 1149
for, they require expensive medical resources that might otherwise be used for other patients. As articulated by the Supreme Court in Cruzan, the state also has a valid interest in preserving the integrity of the medical profession.41 The physicians now caring for Jahi are presumably willing to do so either because they favor the religious exception allowed in New Jersey or because they accept that Jahi is not truly dead under the laws of that state. Nevertheless, physicians in other states, and even in New Jersey and New York, may believe that their ethical responsibilities and professional integrity would be violated by having to treat a person who meets the neurologic criteria for death.43 This was the position taken by the CHO physicians who refused to perform a tracheostomy or a percutaneous gastrostomy on Jahi. The medical profession and the American public have increasingly acknowledged the obligation of physicians to use scarce health-care resources wisely. This being the case, many residents of states whose laws allow that death be determined by neurologic criteria, and even residents in New York and New Jersey whose laws do not, may well resent the use of public monies to pay for the treatment of patients who meet these criteria. Few people would disallow families from using their own money or the funds of private organizations such as the Terri Schiavo Life & Hope Network for this purpose. Indeed, allowing a private, voluntary approach on the part of caregivers and payers to the treatment of patients who are neurologically dead may be a satisfactory ethical compromise. Although states have a right to offer religious exceptions, to date there has been no widespread effort to adopt the UDDA with a religious exception in all 50 states. There also has been no national campaign to challenge the constitutional status of laws such as California’s that provide for reasonable accommodation of families’ religious beliefs but allow physicians to declare death by neurologic criteria. These statutes can probably withstand constitutional challenge because they have served to support a scientific consensus about what death is, to facilitate organ donation and transplantation, and to make the best use of limited medical resources.
Recommendations Although cases like Jahi’s are uncommon, physicians and hospitals should prepare for them. In particular, hospitals should develop policies regarding how to work with families who do not accept the determination of death by neurologic criteria, and physicians should 1150 Medical Ethics
learn how to communicate with these families, aided by hospital attorneys and risk managers. Physicians should also be familiar with state laws regarding the determination of death and should follow these statutes. Whether or not the laws mandate accommodation of families following the determination of death by neurologic criteria, reasonable accommodation should be provided. Accommodation may include efforts to transfer patients to other facilities and providers if families so request. If transfer cannot be arranged, many states, including Texas and California, allow hospitals and physicians to remove treatment when they consider it medically inappropriate.1 Conflicts between families and physicians over the issue of brain death may be particularly pronounced when families believe their loved ones have been injured through medical negligence, as Jahi’s family apparently believes. Cases such as hers are unlikely to be resolved solely by good communication and usually must be processed through the courts. Public relations specialists may be required if families and their attorneys go before the media, as occurred in Jahi’s case, and further scientific discussion of the concept of brain death is desirable. In this regard, society can benefit through further medical and legal exploration of the issues raised by Jahi’s family and Christopher Dolan.
Acknowledgments Financial/nonfinancial disclosures: The author has reported to CHEST that no potential conflicts of interest exist with any companies/ organizations whose products or services may be discussed in this article. Other contributions: I thank David L. Faigman, JD, of the University of California Hastings College of Law, for his legal advice and Judith A. Luce, MD, for her editorial assistance.
References 1. Luce JM. A history of resolving conflicts over end-of-life care in intensive care units in the United States. Crit Care Med. 2010; 38(8):1623-1629. 2. Bender KA, Alund NN. Judge grants restraining order keeping Oakland girl on ventilator through Monday. Oakland Tribune. December 21, 2013. http://www.mercurynews.com/health/ ci24765962/oakland-family-brain-dead-girl-seeks-injuction-keepingoakland-girl-on-ventilator-through-monday. Accessed August 17, 2014. 3. The Associated Press. Jahi McMath, Brain dead Northern California teen, ordered by judge to be taken off life support. Newsday. December 24, 2013. http://www.newsday.com/news/nation/jahimcmath-brain-dead-northern-california-teen-ordered-by-judgeto-be-taken-of-flife-support-1.6670512. Accessed August 10, 2014. 4. Collins T. Jahi McMath, Girl left brain dead from routine tonsillectomy, to be kept on life support. Huffington Post. December 21, 2013. http://www.huffingtonpost,com/2013/12/21/jahi-mcmathlife-support_n_4485119.html. Accessed August 10, 2014. 5. Dolan CB. A personal story of representing Jahi McMath. San Francisco Examiner. December 25, 2013. http://sfexaminer.com/ sanfrancisco/a-personal-story-of-representing-jahi-mcmath/ Content?oid52658052. Accessed August 10, 2014.
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6. Fimrite P. Independent brain exam ordered for Jahi McMath. San Francisco Chronicle. December 23, 2013. http://www.sfgate. com/default/article/independent-brain-exam-ordered-for-JahiMcMath-5088771.php. Accessed August 15, 2014. 7. Lee HK, Jones C. Tonsil surgery patient to remain on life support. San Francisco Chronicle. December 19, 2013. http:// www.sfgate. com/health/article/Tonsillectomy-patient-to-remain-on-lifesupport-5072376.php. Accessed May 22, 2014. 8. McMath vigil raw video of Jahi McMath’s mother’s comments. KTVU, December 18, 2014. http://www/ktvu.com/videos/news/ mcmath-vigil-raw-video-of-jahi-mcmaths-mothers/comments/to/ reporters/Tuesday/vCLZHH/. Accessed June 3, 2014. 9. Lee HK, Jones C. Tonsil surgery patient to remain on life support. San Francisco Chronicle. December 19, 2013. http://www.sfgate. com/health/article/Tonsillectomy-patient-to-remain-on-lifesupport-5072376.php. Accessed July 17, 2014. 10. Rendon C. Tensions rise in dispute over future of girl’s body. KTVU. January 1, 2014. http://www.ktvu.com/news/local/mcmaths-familystruggles-get-surgeries-teen/ncZhP. Accessed July 19, 2014. 11. Lee HK. Oakland hospital must keep brain-dead girl on ventilator. San Francisco Chronicle. December 21, 2014. http://www.sfgate. com/bayarea/article/Oakland-hospital-must-keep-brain-dead-girlon-5083153.php. 12. RenewAmerica.com. Renew America website. http://www. renewamerica.com/columns/byrne. Accessed June 15, 2014. 13. Jones C, Egelko B. Judge rules against brain-dead girl’s family. San Francisco Chronicle. December 24, 2013. http://www.sfgate.com/ default/article/Judge-rules-against-brain-dead-girl-s-family-5091298. php. Accessed May 13, 2014. 14. Jahi McMath Fund. http://www.gofundme.com/Jahi-McMath. Accessed June 5, 2014. 15. Ford D. Jahi McMath’s family seeks to move brain-dead girl to another facility. CNN, December 27, 2013. http://www.cnn. com/2013/12/26/health/jahi-mcmath-girl-brain-dead/. Accessed June 5, 2014. 16. Court of Appeal of the State of California, First Appellate District, Case No. RP-707598, Winkfield v Children’s Hospital, Petition for Writ of Mandate/Prohibition or Other Appropriate Relief and Emergency Motion for Emergency Stay; Memorandum of Points and Authorities (Accompanied by Table of Contents for Supporting Documents Vol. 1). 17. Bartling v Superior Court, 163 Cal. 3d 186 (1984). 18. United States District Court, Northern District of California, Case No. C13-5993, Winkfield v Children’s Hospital, Ex Parte Application for a Temporary Restraining Order to Enjoin Defendants from Ending Life Support, Memorandum of Points and Authorities in Support thereof, Declaration of Christopher B. Dolan Re Notice and Proposed Order. 19. United States District Court, Northern District of California, Case No 4-13-cv-05993-SBA, Winkfield v Children’s Hospital, Opposition to Plaintiff’s Motion to Compel Further Life Support and the Installation of a Tracheostomy tube and Gastric Feeding Tube to Allow Transportation of Jahi McMath. 20. United States District Court, Northern California District, Case No: C 13-5993 SBA, Winkfield v Oakland Children’s Hospital, Order to Show Cause Re Dismissal. 21. Hurd R. DeBolt D, Alund NN. Jahi McMath: Brain-dead girl moved to undisclosed care facility. Oakland Tribune. January 6,
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29. 30. 31. 32. 33. 34. 35. 36.
37. 38. 39. 40. 41. 42. 43.
2014. http://www.mercurynews.com/crime-courts/ci_24853879/ jahi-mcmath-brain-dead-girl-moved-to-undisclosed-care-facility. Accessed June 16, 2014. Alexander K. Positive review for hospital in Jahi McMath case. San Francisco Chronicle. March 13, 2014. http://www.sfgate.com/health/ article/Positive-review-for-hospital-in-Jahi-McMath-case-5314890. php. Accessed June 15, 2014. Fernandez L. Jahi McMath’s family to be honored by Terri Schiavo Network. NBC Philadelphia. March 27, 2014. http://www. nbcphiladelphia.com/news/local/PHI-Jahi-McMaths-Family-toBe-Honored-by-Terri-Schiavo-Network-252654401.html. Accessed June 2, 2014. Questions raised over condition of Jahi McMath after lawyer said girl is improving. CBS San Francisco. June 19, 2014. http://www. cbslocal.com/2014/06/20/questions-raised-over-condition-of-jahimcmath-after-lawyer-said-girl-is-improving. Accessed June 29 2014. Superior Court of the State of California in and for the County of Alameda. Case No. RP13-707598, Latasha Winkfield v Children’s Hospital Oakland, Order Following Case Management Conference. Matier P, Ross A. Videos show Mom coaxing, Jahi McMath moving. San Francisco Chronicle. October 3, 2014. http://www. sfgate.com/bayarea/article/Videos-show-Mom-coaxing-JahiMcMath-moving-5797622.php. Accessed October 9, 2014. Lagos M. Jahi McMath hearing postponed after doctor’s determination. San Francisco Chronicle. October 8, 2014. http://www. sfgate.com/bayarea/article/Jahi-McMath-hearing-postponed-afterdoctor-s-5810707.php. Accessed October 9, 2014. Goldsmith J. Wanted! Dead and/or alive: choosing among the not-so-uniform statutory definitions of death. 61 U. Miami L. Rev. 871 (2007). Cal. Health and Safety Code §7180 (West 2007). Cal. Health and Safety Code §7181 (West 2007). Cal. Health and Safety Code §1254.4 (West 2008). 10 N.Y.C.R.R. §400.16(e)(3) (2008). N.J.S.A. 26:6A-7. 2007. http://www.braindeath.org/law/newjersey/ htm. Accessed July 10, 2014. Olick RS, Braun EA, Potash J. Accommodating religious and moral objections to neurological death. J Clin Ethics. 2009;20(2):183-191. Grodin MA. Religious exemptions: brain death and Jewish law. J Church State. 1994;36(2):357-372. Delaney R. Defining death: why all fifty states should adopt the Uniform Definition of Death Act with a religious exception. Marquette University Legal Studies Research Paper Series, Research Paper No. 10-24. http://ssrn.com/abstracts51598969. Accessed July 15, 2014. Planned Parenthood of Southeastern Pennsylvania v Casey, 505 US 833 (1992). Employment Division, Department of Human Resources v Smith, 494 US 872 (1990). Burwell v Hobby Lobby, 573 US (2014). Griswold v Connecticut, 381 US 479 (1965). Cruzan v Director, Missouri Department of Health, 497 US 261 (1990). Shewmon DA. Chronic “brain death”: meta-analysis and conceptual consequences. Neurology. 1998;51(6):1538-1545. Gostin LO. Legal and ethical responsibilities following brain death: the McMath and Muñoz cases. JAMA. 2014;311(9):903-904.
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The Uncommon Case of Jahi McMath John M. Luce, MD, MSL
A 13-year-old patient named Jahi McMath was determined to be dead by neurologic criteria following cardiopulmonary arrest and resuscitation at a hospital in Oakland, California. Her family did not agree that she was dead and refused to allow her ventilator to be removed. The family’s attorney stated in the media that families, rather than physicians, should decide whether patients are dead and argued in the courts that the families’ constitutional rights of religion and privacy would be violated otherwise. Ultimately, a judge agreed that the patient was dead in keeping with California law, but the constitutional issue was undecided. The patient was then transferred to a hospital in New Jersey, a state whose laws allow families to require on religious grounds that death be determined by cardiopulmonary criteria. Although cases such as this are uncommon, they demonstrate public confusion about the concept of neurologic death and the rejection of this concept by some families. The confusion may be caused in part by a lack of uniformity in state laws regarding the legal basis of death, as reflected in the differences between New Jersey and California statutes. Families who reject the determination of death by neurologic criteria on religious grounds should be given reasonable accommodation in all states, but society should not pay for costly treatments for patients who meet these criteria unless the state requires it, as only New Jersey does. Laws that give physicians the right to determine death by neurologic criteria in other states probably can survive a constitutional challenge. Physicians and hospitals faced with similar cases in the future should follow state laws and work through the courts if necessary. CHEST 2015; 147(4):1144-1151 ABBREVIATIONS:
CHO 5 UCSF Benioff Children’s Hospital Oakland; UDDA 5 Uniform Determination
of Death Act
Most families of patients who are determined to be dead by neurologic criteria in the ICU accept the diagnosis given them by physicians and other health professionals. As a result, the families commonly agree that mechanical ventilation and other kinds of medical support can be withdrawn from the patients, unless it is continued temporarily until their organs can be donated. Occasionally, however, families do not
Manuscript received September 8, 2014; revision accepted October 31, 2014. AFFILIATIONS: From the University of California, San Francisco; and the Division of Pulmonary and Critical Care Medicine, San Francisco General Hospital, San Francisco, CA. CORRESPONDENCE TO: John M. Luce, MD, MSL, Division of Pulmonary and Critical Care Medicine, San Francisco General Hospital, 1001
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agree that the patients are dead, seek legal restraint to prevent physicians from discontinuing treatment, and bring lawsuits alleging professional negligence against them.1 In this article, I review the well-publicized case of a teenager determined to be dead by neurologic criteria whose family and attorney objected to the California law allowing such determination. I also discuss the legal and,
Potrero Ave, Room 5 K1, San Francisco, CA 94110; e-mail: jluce@ medsfgh.ucsf.edu © 2015 AMERICAN COLLEGE OF CHEST PHYSICIANS. Reproduction of this article is prohibited without written permission from the American College of Chest Physicians. See online for more details. DOI: 10.1378/chest.14-2227
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in particular, constitutional implications of the case and make recommendations about how such cases should be dealt with in the future. I do not discuss the medical and legal validity of the neurologic death standards, a topic that merits a review of its own.
The Case The Patient
Jahi McMath was a 13-year-old obese black girl who underwent an adenotonsillectomy, uvulopalatopharyngioplasty, and submucous resection of bilateral inferior turbinates on December 9, 2013, for the treatment of OSA. The procedure took place at Oakland Children’s Hospital and Research Center in Oakland, California, which has been known as the UCSF Benioff Children’s Hospital Oakland (CHO) since its affiliation with the University of California, San Francisco, in 2014. After surgery, Jahi was transferred to the pediatric ICU for observation. There, in the presence of her mother, Latasha “Nailah” Winkfield, she suddenly started bleeding from her nose and mouth and suffered a cardiopulmonary arrest.2 Jahi’s spontaneous circulation was restored by cardiopulmonary resuscitation, and she was placed on a mechanical ventilator to support her breathing. She received IV fluids and was cared for by a number of CHO physicians. Despite aggressive treatment, she did not regain consciousness. On December 11, the chief of neurology at CHO determined that Jahi was dead by neurologic criteria, and an EEG of her brain showed no electrical activity. The following day, a second CHO physician affirmed that Jahi was dead by neurologic criteria.3 After making the diagnosis, Jahi’s physicians told Winkfield and other family members that Jahi met the neurologic criteria for death. They said that although she appeared to be breathing on the mechanical ventilator, she did not do so on her own during apnea testing. They explained that although Jahi’s heart was beating, it could not do so indefinitely. Furthermore, although her extremities might move, this movement was reflexive. In keeping with hospital policy and state law, the family was approached for organ donation by the Northern California Transplant Donor Network.4 Despite lengthy discussions with Jahi’s physicians, her family did not believe that Jahi was dead. Jahi’s mother and her uncle, Omari Sealey, could not understand why Jahi had arrested after what they perceived as a simple tonsillectomy and blamed both the physicians and CHO. The family did not want Jahi to be a donor
journal.publications.chestnet.org
and requested that she remain on the ventilator for as long as possible, at least through Christmas. On the afternoon of December 15, Winkfield and other family members were informed that Jahi would be removed from the ventilator the following morning pending the arrival of a family member who was traveling.4 That evening, however, Jahi’s uncle contacted a San Francisco plaintiff attorney named Christopher Dolan. Dolan reviewed Jahi’s case and the law relevant to it and agreed to represent the family on a pro bono basis. In the early morning of December 16, he e-mailed a cease-and-desist order to CHO. Later that day, he and Jahi’s family met with physicians and administrators at CHO, who agreed to continue mechanical ventilation temporarily.5 The Battle in the Media
After the meeting, Dolan and the family held the first of what were to become regular press conferences at the hospital. Dolan told reporters, “The family believes (Jahi) is alive. It is our position that no doctor can make a determination about end of life without parental consent.”6 Winkfield said, “I can feel my daughter,” and alleged that the hospital wanted to use her bed for other patients.7 Sealey insisted that CHO wanted to remove Jahi’s ventilator to avoid paying for economic damages resulting from a possible malpractice lawsuit, presumably assuming she was still alive.8 After the press conference on December 17, CHO issued a statement saying, “Our hearts go out to the patient and her family. Unfortunately, we have not been authorized by the family to share information with the public about this matter. Consequently, we are not able to correct misperceptions created in this sad situation. Nevertheless, we want to assure the community that we are doing everything in our capacity to provide support for the grieving family.”9 The media coverage was intense that day and in the weeks to follow because Jahi’s story was so compelling. The story also was largely played out during Christmas and New Year’s, when other dramatic news events were scarce. Dolan was experienced in dealing with reporters; Jahi’s family was large, passionate, and black. CHO, on the other hand, was represented by cautious administrators and physicians, almost all of them white. They were restrained by the Health Insurance Portability and Accountability Act from revealing medical details about Jahi, and seemed insensitive because they refused to continue supporting her.
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Eventually, CHO called in Sam Singer, a San Francisco public relations expert, to speak for it before the media. Singer continued to stress that the hospital and its physicians had acted responsibly, were concerned about Jahi’s welfare and that of her family, and were not worried about a malpractice suit. Furthermore, Singer stated, “The family attorney is perpetuating a tragic hoax on the public as well as misleading the family. Jahi McMath is deceased…No amount of time, no amount of surgery, and no amount of hope will bring her back.”10 The Legal Fight
On December 20, Dolan filed a motion on behalf of Winkfield in the Alameda County Superior Court for a temporary restraining order that would enjoin CHO from removing Jahi from the ventilator and compel it to perform a tracheostomy and install a feeding gastrostomy.11 Dolan also requested that Jahi be evaluated by a third physician not associated with the hospital. He proposed Paul Byrne, an Ohio pediatrician who does not support the concept of brain death.12 On December 23, Superior Court Judge Evilio Grillo agreed to an outside evaluation, although he did not appoint Byrne. Instead, he appointed Paul Fisher, chief of child neurology at Stanford University’s Lucille Packard Hospital. Fisher examined Jahi in Dolan’s presence and affirmed that she was dead by neurologic criteria; cerebral blood flow testing performed under Dolan’s observation corroborated the diagnosis. On December 24, Grillo ruled that Jahi was dead under California law. He granted the injunction to maintain Jahi on the ventilator and to continue IV fluids until December 30, 2013, but did not order that a feeding tube be placed.13 Judge Grillo’s decision afforded Jahi’s family additional time to find another facility willing to care for her. Winkfield had already established an internet fund to raise money for her daughter’s transportation to and further treatment at such a facility, which the Terri Schiavo Life & Hope Network was helping the family to find.14 Meanwhile, Dolan told the media that several hospitals, including some in California, would accept Jahi in transfer. However, these facilities would require that she receive a tracheostomy and a percutaneous gastrostomy beforehand.15 On December 30, 2013, on behalf of Winkfield, Dolan sought an injunction through the California Court of Appeal for the Second District to maintain Jahi on the ventilator and to have a tracheostomy and feeding tube placed. In his motion, Dolan argued that California Health and Safety Code Section 7180, the state’s Uniform 1146 Medical Ethics
Determination of Death Act (UDDA), which allows the determination of death by neurologic criteria, violated Jahi’s mother’s rights of religious freedom and privacy guaranteed by the California Constitution.16 In his motion, Dolan said that Winkfield was exercising her religious freedom in believing that Jahi was not dead and in wanting to make that determination for her. He also noted that the right of competent adults or their surrogates to refuse treatment was established by the California Supreme Court in its Bartling v Superior Court decision.17 He then opined, “The court must agree that if a person (or his or her surrogate) has a constitutional right to end their life (by refusing treatment) they have an equal, if not greater right to undertake measures to prolong their life.”16 Also on December 30, Dolan sought injunctive relief from the United States District Court for the Northern District of California on similar US constitutional grounds.18 In opposition to Dolan’s motion, attorney Douglas Strauss, representing CHO, submitted a motion in which he agreed that Jahi’s mother had a constitutional right to believe that her daughter was not dead. “However,” he said, “plaintiff has no constitutional right to insist that the United States medical-legal system honor her religious belief and treat a dead person as if she remained alive.”19 On January 3, 2014, before Dolan’s and Strauss’s motions could be heard in federal court, the parties appeared before Judge Grillo in connection with plaintiff’s parallel state action, and reached an agreement that CHO could release Jahi’s body to the Alameda County coroner. At this point, the prior motions to the state and federal courts were rendered moot and they were dismissed.20 As a result, the issue of whether Jahi’s mother’s constitutional rights of freedom of religion and privacy were being violated was not decided. Jahi’s family accepted responsibility for her body the evening of January 5, 2014, when Jahi was moved to an undisclosed care facility, where a tracheostomy and feeding tube were placed. That same day, the Alameda County coroner issued a death certificate indicating that Jahi died on December 12, 2013, the day she was determined to be dead by neurologic criteria for the second time at CHO. The coroner did not state the cause of death, however; as part of the agreement between the family and the coroner’s office, Jahi’s body was to be returned, possibly for autopsy, after she was declared dead, presumably by cardiopulmonary criteria, in the facility in which she was placed.21
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Recent Events
On March 13, the California Department of Public Health stated that CHO had followed governmental standards in its treatment of Jahi and 28 other patients recently treated at the hospital. The hospital cheered this statement, but Dolan regarded it as an example of “the fox guarding the henhouse” and said that the family would pursue a civil action.22 On March 27, Jahi’s mother, uncle, and other family members were guests of honor at the Terri Schiavo Life & Hope Network’s Second Annual Awards Gala in Philadelphia, Pennsylvania, where Mrs. Winkfield said that her daughter’s clinical condition had improved.23 On June 20, Jahi was reported to be in the pediatric ICU of St. Peter’s University Hospital System in New Brunswick, New Jersey. Whether Jahi’s hospital costs were being met by the hospital, by Medicaid, or by supporters such as the Terri Schiavo Life & Hope Network was unclear. Dolan would not confirm where Jahi was hospitalized, but he did say that she had improved so much she might be moved to another facility. He also said that her family was not opposed to further brain function testing and that it “may show something different than when Jahi was under the most acute stress of swelling of the brain and lack of food and nutrition.”24 “I think the public deserves an answer,” Sam Singer, CHO’s public relations spokesperson, responded in the media. “It’s not fair to tug at people’s heartstrings and make false claims like this without being able to back them up. The news media, independent physicians and the medical community ought to be allowed in, so they can make a judgment for themselves as to whether this is the greatest miracle known to man, or this is a hoax. Sadly, I think this is a hoax.”24 On September 30, Judge Evilio Grillo of the Alameda County Superior Court held a case management conference at which Christopher Dolan requested a hearing during which he would present evidence that Jahi, who currently was being cared for in a private residence, was not in fact dead by neurologic criteria.25 The evidence, presented by Dolan at a press conference on October 2, included video clips showing Jahi moving her hands and feet purportedly in response to her mother’s commands. Dolan’s evidence also included MRI and EEG studies suggesting that Jahi had measurable brain activity, according to Philip DeFina, chief executive officer of the International Brain Research Foundation in New Jersey. DeFina, who is not a physician, had not perjournal.publications.chestnet.org
formed a clinical evaluation of Jahi. The press noted that if Judge Grillo found this evidence compelling, Jahi “could be returned to her home in California, with the costs to care for her shifted to the state and possibly UCSF Benioff Children’s Hospital in Oakland.”26 On October 6, the media reported that Paul Fisher, the Stanford child neurologist originally appointed by Judge Grillo to evaluate Jahi, had written a letter to the judge stating that none of the evidence provided by Dolan altered his opinion that Jahi was dead by neurologic criteria. Fisher also noted that the MRI and EEG studies (which are not required by California law to determine death by neurologic criteria and traditionally have been used only to corroborate the diagnosis but not to refute it) were irrelevant. In turn, Dolan requested that the hearing he had requested previously, which was scheduled for October 9, be postponed because DeFina and other members of his “team of international brain death experts” needed time to review Fisher’s letter.27
Legal Implications Legal Basis of Death
The 1980 UDDA was developed with the assistance of the American Medical Association and the American Bar Association to provide a unitary definition of death across the United States that would incorporate the concept of determining death by neurologic criteria and sanction organ donation from people who met those criteria. As of 2007, 14 states and the District of Columbia had adopted the UDDA as written; 18 had adopted a modified version of the Act; 14 had written their own statutes; and four had not adopted legislation but had incorporated the concept of determining death by neurologic criteria in case law or regulations.28 California Health and Safety Code Section 7180, the state’s UDDA, defines death as “either (1) irreversible cessation of circulatory and respiratory functions, or (2) irreversible cessation of all functions of the entire brain, including the brain stem. A determination of death must be made by acceptable medical standards.”29 Section 7181 requires, “When an individual is pronounced dead by determining that the individual has sustained an irreversible cessation of all functions of the entire brain, including the brain stem, there shall be independent confirmation by another physician.”30 Section 1254.4 of the Health and Safety Code mandates, “A general acute care hospital shall adopt a policy for providing family or next of kin with a reasonably brief period of accommodation…from the time that a patient 1147
is declared dead by reason of irreversible cessation of all functions of the entire brain, including the brain stem… through discontinuation of cardiopulmonary support of the patient. During this reasonably brief period of accommodation, a hospital is required to continue only previously ordered cardiopulmonary support. No other medical intervention is required. For purposes of this statute, a ‘reasonably brief period’ means an amount of time afforded to gather family or next of kin at the patient’s bedside.”31 Section 1254.4 also mandates, “If the patient’s legally recognized health care decision-maker, family, or next of kin voices any special religious or cultural practices and concerns of the patient or the patient’s family surrounding the issue of death by reason of irreversible cessation of all functions of the entire brain of the patient, the hospital shall make reasonable efforts to accommodate those religious and cultural practices and concerns. For purposes of this section, in determining what is reasonable, a hospital shall consider the needs of other patients and prospective patients in urgent need of care.”31 Although California statutes require only that physicians and hospitals accommodate religious and cultural practices and concerns, New York and New Jersey allow families to reject the concept of determining death entirely by neurologic criteria. New York, for example, mandates that hospitals develop “a procedure for the reasonable accommodation of the individual’s religious or moral objection to the determination,” which may include “the continuation of artificial respiration under certain circumstances.”32 However, New York does not require accommodation for those with objections based “solely on the psychological denial that death has occurred or on an alleged inadequacy of the brain death determination.”32 Nor does that state mandate payment for the continued treatment of patients who meet neurologic criteria for death. New Jersey law states, “The death of an individual shall not be declared on the basis of neurological criteria… when the licensed physician authorized to declare death, has reason to believe…that such a declaration would violate the personal religious beliefs of the individual. In these cases, death shall be declared…solely on the basis of cardio-respiratory criteria.”33 Furthermore, unlike the legal situation in New York, in New Jersey no payer “shall deny coverage or exclude from the benefits of service and individual solely because of that individual’s personal religious beliefs regarding the application of neurological criteria for declaring death.”33
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Constitutional Issues
The New York and New Jersey laws allowing families to object to the determination of death by neurologic criteria were developed to accommodate Orthodox Jews, who believe that death occurs when the soul leaves the body, which coincides with the cessation of breathing and heartbeat.34,35 Christopher Dolan sought a similar accommodation for Jahi McMath and her family in arguing that California Health and Safety Code Section 7180 violated their rights of religious freedom and privacy. Dolan did not offer a detailed argument in his motions to the state and federal courts, and such an argument is not available in the legal literature. Nevertheless, the constitutional implications of what might be Dolan’s position have been explored by Rachel Delaney in a research paper for the Marquette University Law School published before Jahi McMath’s case.36 Delaney’s thesis is that all 50 states should adopt the UDDA with a religious exception similar to that of New York and New Jersey. Delaney argues that, without such a religious exception, the UDDA unfairly burdens Orthodox Jews by denying them the opportunity to die in accordance with the cardiopulmonary definition of death under Jewish law. In addition, she believes that requiring a neurologic death standard also violates Orthodox Jews’ fundamental right to privacy. Citing Planned Parenthood of Southeastern Pennsylvania v Casey, in which the US Supreme Court said that “at the heart of liberty is the right to define one’s own concept of existence,”37 she claims that “privacy in death determinations should be considered a fundamental liberty necessary for accomplishing the American ideal of allowing the free exercise of religion.”36 In addition, Delaney opines that no compelling state interests are burdened by the cardiopulmonary death standard. She acknowledges that the UDDA promotes a state interest in standardizing the definition of death across the United States and thereby preventing confusion and conflicts arising from citizens being declared dead in one state and not in another. At the same time, however, she argues that making a religious exception to this uniform definition would not be significantly disruptive because it would only apply to a small number of Orthodox Jews. The same argument of limited disruption would apply to the state’s interest in preserving life through organ transplantation and in promoting hospital efficiency and financial solvency.36
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Regarding the last point, Delaney argues that the New York law (she does not mention New Jersey here) is not unduly onerous to hospitals from a logistical standpoint. “Moreover, the New York law does not burden hospitals with the excessive costs of maintaining patients who meet the standard for brain death but do not meet the standard for cardiac death.”36 This is both because patients determined to be dead by neurologic criteria cannot be maintained indefinitely on the ventilator, and because few families, presumably only Orthodox Jews, would exercise the religious exception. Jahi McMath’s case serves as a reminder of the limitations of Delaney’s arguments for a widespread religious exception for the UDDA. Jahi’s family appears to have sincere religious beliefs, although what their religion is and what its attitudes are regarding brain death have not been clarified. Given the apparent sincerity of their beliefs, it could be argued that their right to exercise those beliefs is burdened by the lack of a religious exception in California’s UDDA. Nevertheless, the UDDA was not drafted specifically to burden a religious person or group. Rather, in the US Supreme Court language in Employment Division, Department of Human Resources v Smith,38 the UDDA is “a neutral law of general applicability,” similar to laws preventing polygamy or requiring that all Americans pay Social Security taxes. It is also rationally related to legitimate governmental interests. As such, the UDDA is not unconstitutional for failing to provide a religious exception according to the standards established in Smith. Given its recent decision in Burwell v Hobby Lobby,39 whether the court will maintain this standard is unclear. Delaney supports her argument that “privacy in death determinations should be considered a fundamental liberty” primarily from two US Supreme Court cases: Casey, mentioned earlier, and Griswold v Connecticut.40 In the latter case, the court characterized privacy as a fundamental right contained within the “penumbra” of the fifth, ninth, and 14th Amendments. Yet the “penumbra” theory has since been abandoned by the court. Furthermore, the court has never said—in Casey, Griswold, or any other case—that families have a constitutional right to determine when death occurs, or to insist that patients be kept “alive” after the state has declared them dead. Dolan’s opinion that patients and families may request prolonged treatment because they have a constitutional right of privacy in refusing treatment is also legally problematic. In Cruzan v Director, Missouri Department of Health, the US Supreme Court grounded the liberty journal.publications.chestnet.org
interests of patients in refusing treatment not in privacy but in the common law right against battery, or unwanted touching.41 And although patients and families may have a “negative” right to refuse treatment under Cruzan, the court has never granted them an affirmative right to treatment on demand. In terms of state interests, Jahi’s case illustrates that the lack of uniformity in state laws regarding the religious exception to determination of death by neurologic criteria can cause both confusion and conflict when a patient is considered dead in one state and not in another. Furthermore, although cases such as Jahi’s are uncommon, in that most families accept neurologic death and its implications, her case suggests that not only Orthodox Jews, but also families of other organized religions and personal faiths, may request a religious exception to the neurologic death standard if it were more widely available. What the number of these families might be is unknown. No data are available regarding how many families have already sought a religious exception to the determination of death by neurologic criteria in New York, New Jersey, or other states. Data are also not available concerning the impact of Jahi McMath’s case on organ donation and transplantation. Nevertheless, in recent months, at San Francisco General Hospital, the families of two patients determined to be dead by neurologic criteria have rejected this diagnosis and refused organ donation, citing Jahi’s case. If cases like these and Jahi’s become more common, the increased granting of religious exceptions might well decrease the number of organ donations and adversely impact the state’s interest in preserving life through organ transplantation. Of course, organ donations might decrease even more if Jahi is proven to not be dead by neurologic criteria, as Dolan believes will be the case. Widespread legislative adoption of a religious exception to the UDDA would be much more costly to hospitals and to society than Delaney believes. This cost would result not only from the increased number of neurologically dead patients being treated but also from the length of treatment that would be required. Although many patients suffer cardiopulmonary death shortly after they are determined to be dead by neurologic criteria, a substantial number of these patients, especially young ones, have been maintained on mechanical ventilators for months and, in some cases, years.42 Most of these patients are probably cared for at home or in long-term care facilities after they leave the ICU, as is the case with Jahi. Nevertheless, wherever they are cared 1149
for, they require expensive medical resources that might otherwise be used for other patients. As articulated by the Supreme Court in Cruzan, the state also has a valid interest in preserving the integrity of the medical profession.41 The physicians now caring for Jahi are presumably willing to do so either because they favor the religious exception allowed in New Jersey or because they accept that Jahi is not truly dead under the laws of that state. Nevertheless, physicians in other states, and even in New Jersey and New York, may believe that their ethical responsibilities and professional integrity would be violated by having to treat a person who meets the neurologic criteria for death.43 This was the position taken by the CHO physicians who refused to perform a tracheostomy or a percutaneous gastrostomy on Jahi. The medical profession and the American public have increasingly acknowledged the obligation of physicians to use scarce health-care resources wisely. This being the case, many residents of states whose laws allow that death be determined by neurologic criteria, and even residents in New York and New Jersey whose laws do not, may well resent the use of public monies to pay for the treatment of patients who meet these criteria. Few people would disallow families from using their own money or the funds of private organizations such as the Terri Schiavo Life & Hope Network for this purpose. Indeed, allowing a private, voluntary approach on the part of caregivers and payers to the treatment of patients who are neurologically dead may be a satisfactory ethical compromise. Although states have a right to offer religious exceptions, to date there has been no widespread effort to adopt the UDDA with a religious exception in all 50 states. There also has been no national campaign to challenge the constitutional status of laws such as California’s that provide for reasonable accommodation of families’ religious beliefs but allow physicians to declare death by neurologic criteria. These statutes can probably withstand constitutional challenge because they have served to support a scientific consensus about what death is, to facilitate organ donation and transplantation, and to make the best use of limited medical resources.
Recommendations Although cases like Jahi’s are uncommon, physicians and hospitals should prepare for them. In particular, hospitals should develop policies regarding how to work with families who do not accept the determination of death by neurologic criteria, and physicians should 1150 Medical Ethics
learn how to communicate with these families, aided by hospital attorneys and risk managers. Physicians should also be familiar with state laws regarding the determination of death and should follow these statutes. Whether or not the laws mandate accommodation of families following the determination of death by neurologic criteria, reasonable accommodation should be provided. Accommodation may include efforts to transfer patients to other facilities and providers if families so request. If transfer cannot be arranged, many states, including Texas and California, allow hospitals and physicians to remove treatment when they consider it medically inappropriate.1 Conflicts between families and physicians over the issue of brain death may be particularly pronounced when families believe their loved ones have been injured through medical negligence, as Jahi’s family apparently believes. Cases such as hers are unlikely to be resolved solely by good communication and usually must be processed through the courts. Public relations specialists may be required if families and their attorneys go before the media, as occurred in Jahi’s case, and further scientific discussion of the concept of brain death is desirable. In this regard, society can benefit through further medical and legal exploration of the issues raised by Jahi’s family and Christopher Dolan.
Acknowledgments Financial/nonfinancial disclosures: The author has reported to CHEST that no potential conflicts of interest exist with any companies/ organizations whose products or services may be discussed in this article. Other contributions: I thank David L. Faigman, JD, of the University of California Hastings College of Law, for his legal advice and Judith A. Luce, MD, for her editorial assistance.
References 1. Luce JM. A history of resolving conflicts over end-of-life care in intensive care units in the United States. Crit Care Med. 2010; 38(8):1623-1629. 2. Bender KA, Alund NN. Judge grants restraining order keeping Oakland girl on ventilator through Monday. Oakland Tribune. December 21, 2013. http://www.mercurynews.com/health/ ci24765962/oakland-family-brain-dead-girl-seeks-injuction-keepingoakland-girl-on-ventilator-through-monday. Accessed August 17, 2014. 3. The Associated Press. Jahi McMath, Brain dead Northern California teen, ordered by judge to be taken off life support. Newsday. December 24, 2013. http://www.newsday.com/news/nation/jahimcmath-brain-dead-northern-california-teen-ordered-by-judgeto-be-taken-of-flife-support-1.6670512. Accessed August 10, 2014. 4. Collins T. Jahi McMath, Girl left brain dead from routine tonsillectomy, to be kept on life support. Huffington Post. December 21, 2013. http://www.huffingtonpost,com/2013/12/21/jahi-mcmathlife-support_n_4485119.html. Accessed August 10, 2014. 5. Dolan CB. A personal story of representing Jahi McMath. San Francisco Examiner. December 25, 2013. http://sfexaminer.com/ sanfrancisco/a-personal-story-of-representing-jahi-mcmath/ Content?oid52658052. Accessed August 10, 2014.
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