chest_144_4_1388

Postgraduate Education CornerCONTEMPORARY REVIEWS IN CRITICAL CARE MEDICINE

CHEST

1388 Postgraduate Education Corner

Patients who survive severe traumatic brain injury (TBI) or cardiopulmonary arrest and resuscitation frequently are admitted to the ICU while in coma. Laureys and colleagues 1 noted that these patients do not remain comatose indefi nitely. Some become brain dead; others regain consciousness; and still others

Chronic Disorders of Consciousness Following Coma

Part Two: Ethical, Legal, and Social Issues

John M. Luce , MD

Manuscript received February 22 , 2013 ; revision accepted April 12 , 2013 . Affi liations: From the Department of Medicine and Department of Anesthesia, University of California San Francisco, and Divi-sion of Pulmonary and Critical Care Medicine, San Francisco General Hospital, San Francisco, CA. Correspondence to: John M. Luce, MD, Division of Pulmonary and Critical Care Medicine, San Francisco General Hospital, 1001 Potrero Ave, Room 5 K1, San Francisco, CA 94110; e-mail: [email protected] 2013 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.13-0428

Increasing numbers of patients survive traumatic brain injury and cardiopulmonary arrest and resuscitation and are admitted to the ICU while in coma. Some of these patients become brain dead; others regain consciousness. Still others become vegetative or minimally conscious, condi-tions called chronic disorders of consciousness and ultimately can be cared for outside the ICU. Whether these patients would want life-sustaining therapy is diffi cult to determine because most have not articulated their wishes before becoming comatose. Ethics and law recognize that patients with decision-making capacity have a right to refuse such therapy and that surrogates can exercise this right for them through the principle of substituted judgment as was established by the Supreme Court of New Jersey in the case of Karen Ann Quinlan. In its decision regarding Nancy Cruzan, the US Supreme Court determined that states may require clear and convincing evidence of a vegetative patients prior wishes before life-sustaining therapy may be withdrawn; this standard has been applied to minimally conscious patients by state supreme courts in some cases. Nevertheless, cases such as these only come to the legal system because end-of-life decisions are contested, which is unusual, and most end-of-life decisions for specifi c patients with chronic disorders of consciousness are made by surrogates with recommendations from physicians with-out court involvement. Recent advances in neuroimaging may infl uence both end-of-life decision-making and legal deliberations. Targeting vegetative and minimally conscious patients in medical resource allocation remains ethically unacceptable and untested in the law. CHEST 2013; 144 ( 4 ): 1388 1393

Abbreviations : TBI 5 traumatic brain injury

For related article see page 1381

become vegetative or minimally conscious, conditions that Bernat 2 called chronic disorders of conscious-ness, and ultimately can be cared for outside the ICU. Comatose patients lack the wakefulness and aware-ness that distinguish consciousness from unconscious-

ness. Vegetative patients are awake in that they manifest sleep-wake cycles but are unaware of their environ-ment and cannot respond to stimuli. Minimally con-scious patients are awake, aware to a limited extent, and somewhat responsive.

In another article in this issue of CHEST , 3 I dis-cussed the behavioral and pathologic features tradition-ally used to diagnose chronic disorders of consciousness and explained how recent EEG and neuroimaging studies have revealed the limitations of this approach.

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These studies also have demonstrated that some vege-tative patients can become minimally conscious and that minimally conscious patients can gain increased awareness with or without treatment, although their overall prognosis for neurologic recovery remains poor. In this article, I review the ethical, legal, and social issues relevant to chronic disorders of consciousness in light of our increased understanding of them.

Ethical Issues

The major ethical issue relevant to comatose, veg-etative, and minimally conscious patients is whether they should receive life-sustaining therapy and, if so, for how long. In this regard, the prevalent moral view in the United States is that all patients should make their own decisions about any and all kinds of ther-apy if they have the capacity to do so. This view is in keeping with the ethical principle of autonomy: respect for the patients right of self-determination. 4 The American Medical Association 5 and the American Academy of Neurology 6 both have advised that patients in coma and with chronic disorders of consciousness should either be maintained on life-sustaining ther-apy, including artifi cial nutrition and hydration, for as long as they wish or have it withheld or withdrawn at any point if they so desire.

Unfortunately, comatose, vegetative, and minimally conscious patients cannot communicate after they have experienced a TBI or cardiopulmonary arrest and resuscitation, unlike patients who are locked-in and often can communicate by blinking their eyes. As a result, family members or other surrogates must make decisions for these patients. Ideally, these decisions should be made by the process of substituted judg-ment through which the surrogates decide according to what they believe the patient would do before the chronic disorder of consciousness developed, although best interests standards can be used if neces-sary. If available, advance directives completed by patients when they could make decisions can help to direct the substituted judgment process.

Advance care planning has been demonstrated to facilitate end-of-life care for elderly patients and those with chronic diseases. 7 Nevertheless, few coma-tose, vegetative, and minimally conscious patients have created advance directives before losing decision-making capacity, which is particularly true of young people who are more likely to experience TBI than older individuals. But even elderly patients who create advance directives often make general statements about not wanting to be supported in the event of terminal illness rather than specifying what they would want done if they became unconscious, a condition that is not necessarily terminal. As a result, surro-

gates often must make decisions with limited infor-mation of the patients wishes.

Studies of substituted judgment have shown that surrogate decisions are reasonably concordant with what patients who are terminally ill would decide, particularly if surrogates and patients have discussed end-of-life issues, if only in a general sense, before-hand. 8 , 9 Yet discordance has been demonstrated in the same studies, and many physicians have encoun-tered surrogates who do not know whether patients for whom they are making decisions would prefer life-sustaining therapy. This experience has led some physicians to believe that they themselves should make decisions for patients under the ethical princi-ples of benefi cence (the obligation to benefi t patients) and nonmalefi cence 4 (the obligation to avoid harming them), even when the patients surrogates have not requested it.

Physicians may not want to continue life-sustaining therapy in patients with chronic disorders of conscious-ness because they believe that the patients cannot benefi t from the therapy and may be harmed by it. Often allied with this belief is the concept that the therapy is futile in that it cannot restore conscious-ness even if it can sustain life. This concept underlaid a 1991 statement by the Bioethics Task Force of the American Thoracic Society, 10 which included several ICU physicians. The task force stated:

A life-sustaining intervention is futile if reason-ing and experience indicate that the intervention would be highly unlikely to result in a meaning-ful survival for that patient....Survival in a state with permanent lack of consciousness (i.e., com-pletely lacking cognitive or sentient capacity) may be generally regarded as having no value for such a patient.

How many other ICU physicians would agree with the American Thoracic Society statement is unknown. Nevertheless, the attitudes that presumably underlie the statement are not unique to critical care prac-titioners. For example, almost one-half of the mem-bers of the American Academy of Neurology and the American Medical Directors Association surveyed in the early 1990s responded that patients who are in a vegetative state should be considered dead. At the same time, 20% of the respondents believed that it would be ethical to administer lethal injections of sedatives and analgesics to the patients. 11

Although these attitudes may infl uence the recom-mendations physicians make to patient surrogates, the surrogates themselves usually make end-of-life deci-sions for patients with chronic disorders of conscious-ness when they are available. In a study published in 1995, OCallahan and colleagues 12 observed that



physicians recommended that life-sustaining therapy be withdrawn from 24 of 47 patients with TBI who were predicted to die or become vegetative in the surgical ICU at San Francisco General Hospital over a 1-year period. The surrogates agreed with these recommen-dations for all but two patients who were predicted to become vegetative, both of whom were alive in chronic care facilities 6 months later.

Regarding the issue of possibly administering lethal injections of sedatives and analgesics to vegetative patients, Wilson and colleagues 13 showed that these drugs were intended primarily to relieve pain and suffering, not to hasten death, in patients with severe TBI in the same San Francisco General Hospital ICU. Although the physicians were not certain that coma-tose or vegetative patients could actually experience pain largely because they had to rely on patient responses to noxious stimuli rather than on neuroim-aging techniques, they frequently gave sedatives and analgesics because pain was a possibility.

Of course, if patients in a vegetative state are truly dead, most ethical obligations to them would cease. In 1971, 3 years after the Harvard Medical School Ad Hoc Committee defi ned death as irreversible coma caused by damage to the cerebral cortex and the brain stem, Brierley and colleagues 14 argued that death might be defi ned by loss of higher cortical function alone. This concept of neocortical death was advanced by Veatch, 15 who urged in 1993 that irreversible ces-sation of the capacity for consciousness might be considered an ethical and legal adjunct to death by whole-brain criteria. Other ethicists, including Cranford and Smith, 16 stated that consciousness is the most critical moral and constitutional standard for human personhood.

As Laureys 17 noted, adoption of the neocortical def-inition of death would allow vegetative patients to be considered dead. Minimally conscious patients also could be considered dead if social interaction were a requirement for meaningful human existence, given that most of these patients are unable to use more than a few words. Nevertheless, although the concept of brain death is now widely accepted on ethical grounds and has been incorporated into state laws modeled after the Uniform Death Act, the con-cept of neocortical death has not been adopted eth-ically or legally in the United States. This lack of adoption is primarily due to the diffi culty of defi ning and diagnosing consciousness, the fi ndings on neu-roimaging studies that regional cerebral metabolic activity may be preserved in vegetative and minimally conscious patients, and the fact that some patients with chronic disorders of consciousness can regain awareness and a limited ability to communicate. 1 - 3

Another reason that the concept of neocortical death has not been adopted is that it runs counter

to several religious traditions. Blow and colleagues 18 observed that in Judaism, the classic defi nition of death is the condition that occurs after spontaneous breath-ing and heartbeat have stopped. Although laws in New York and New Jersey allow death to be declared on a cardiopulmonary basis at the request of Orthodox Jews, most Jewish authorities accept the use of whole-brain criteria. Judaism presumably would not be hos-pitable to the idea of neocortical death because most Jews believe that the immortal soul can only leave the body when it, and not just the cerebral cortex, has died. The same position probably would be taken by the Catholic Church.

As for the Catholic Churchs position on life-sustaining therapy, in 1957, Pope Pius XII affi rmed that there was no obligation to use extraordinary means, such as mechanical ventilation, to support critically ill patients, presumably including those who are coma-tose, vegetative, or minimally conscious. The Pope was referring to treatments that were considered exces-sively dangerous, painful, burdensome, or even unusual at the time. In 2004, Pope John Paul II suggested that artifi cial nutrition and hydration are ordinary and, therefore, obligatory therapies whether used within or outside the ICU. He also observed that with-drawing these substances from a vegetative patient results in death by starvation and is true and proper euthanasia by admission. 19

In keeping with the position of Pope John Paul II, artifi cial nutrition and hydration would appear to be obligatory therapies unless they are excessively burdensome, according to Clark. 20 Although these therapies probably would not be painful to vegetative patients who cannot experience pain, they might be an existential burden if the patients were dying of cancer and other terminal illnesses and their deaths were prolonged. The Catholic Church does not con-sider permanent unconsciousness a terminal illness by itself, however. Furthermore, although the Catholic Church supports the use of advance directives in decision-making at the end of life, Catholic health-care facilities may not honor directives that are con-trary to the churchs moral teachings.

Legal Issues

All US states have enacted statutes that address brain death, although these statutes may differ in whether brain death can be superseded by cardio-pulmonary death, as noted earlier, or whether it can be determined clinically or only after EEG or neuro-imaging studies. In addition, many states have passed statutes on guardianship and end-of-life surrogate decision-making, the use of advance directives, or both. Some of these statutes also contain operational defi nitions of consciousness and allow life-sustaining



therapy, including artifi cial nutrition and hydration, to be withheld or withdrawn from patients who are permanently unconscious. The laws generally differ in their definitions of consciousness and uncon-sciousness and do not take into account PET scans and functional MRI studies or their potential legal implications. 1 - 3

Where they do exist, state statutes pertaining to consciousness were developed for the most part in response to or in parallel with case law concern-ing patients who are vegetative and not those who are minimally conscious. Cases regarding vegetative patients that have been heard by state supreme courts are precedential only in those venues. Nevertheless, the case of Karen Ann Quinlan in New Jersey has infl uenced courts in other states, as has the case of Nancy Cruzan, which was heard at the US Supreme Court level and, therefore, applies throughout the country. Although both these women were vegetative following cardiopulmonary arrest and resuscitation, the principles established in their cases have been extended to surrogate decision-making for other patients who lack decision-making capacity at the end of life. 21

Key Legal Cases

Karen Ann Quinlan underwent CPR after a drug overdose, became vegetative, and was cared for with a mechanical ventilator in a New Jersey hospital. When the physicians and hospital caring for his daughter refused to remove the ventilator, fearing legal lia-bility, Quinlans father asked a trial court to name him her guardian so that he could order the removal. The trial court granted his request, but it was denied on appeal. Mr Quinlan then took his case to the Supreme Court of New Jersey.

In its In re Quinlan 22 decision in 1976, the Supreme Court of New Jersey reasoned that Quinlan probably would refuse further treatment that could not restore her to consciousness, even though her prior wishes were not documented. The court also stated that she had a constitutional right of privacy to refuse life-sustaining therapy that could be exercised by her father under the principle of substituted judgment. It also declared that Quinlans physicians and the hospital were not liable for her death if an ethics com-mittee agreed that she could not regain conscious-ness. Quinlan died of pneumonia nearly 1 decade after her ventilator was removed. On autopsy, she was found to have extensive necrosis of her thalamus in addition to cerebral atrophy. 23

Nancy Cruzan became vegetative after she was resuscitated from a cardiopulmonary arrest caused by an automobile accident. She ultimately was weaned from the mechanical ventilator and received feeding through a gastrostomy tube. A trial court in Missouri

granted Cruzans parents request to remove the feed-ing tube after learning that Cruzan had once told a housemate that she would not wish to receive artifi -cial nutrition and hydration if she were permanently unconscious. However, the Supreme Court of Missouri ruled that Cruzans statements to her housemate did not constitute clear and convincing evidence of her wishes and were insuffi cient to support her parents request to exercise substituted judgment on her behalf.

The US Supreme Court, which heard the case of Cruzan v Director, Missouri Department of Health , 24 on appeal in 1990, accepted the principle that patients capable of making medical decisions have a right to refuse life-sustaining therapy under the due process clause of the Constitution and the common law prin-ciple of informed consent. Nevertheless, because the state had an abiding interest in protecting life because the choice between life and death is deeply personal and because not all families know their members wishes or represent them adequately, the Court permittedbut did not requirethat Missouri and other states insist on clear and convincing evi-dence of such wishes before life-sustaining therapy could be withheld or withdrawn.

As Annas 25 noted after the Cruzan decision, there is no mathematical formula for the clear and con-vincing evidence standard of proof, which lies between the usual civil standard of a preponderance of the evidence and the criminal standard of beyond a rea-sonable doubt. In the context of withholding and withdrawing life-sustaining therapy, the New York Supreme Court, in the case of In re Storar , 26 described clear and convincing evidence as proof suffi cient to persuade the trier of fact that the patient held a fi rm and settled commitment to the termination of life support under circumstances like those pre-sented. The same standard is used in deportation and civil commitment proceedings, which require written evidence.

Although the US Supreme Court did not deem all oral statements irrelevant in determining patients prior wishes in Cruzan , it did emphasize that such wishes are best expressed in writing. Shortly after the Cruzan decision, Congress passed the Patient Self-Determination Act, 27 which mandates that fed-erally funded health facilities inquire whether patients have written advance directives and help them to pre-pare directives if they so request. After other friends corroborated the conversations Cruzan had with her housemate, her feeding tube was removed, and she died the same year. On Cruzans gravestone, her par-ents listed 1983, the year she became vegetative, as the actual year of her death.

Taken together, the Quinlan and Cruzan deci-sions provide a legal justifi cation for all adult patients



with decision-making capacity to refuse any and all life-sustaining therapy, including artifi cial nutrition and hydration. The decisions also allow surrogates, through the principle of substitute judgment, to refuse treatment when patients lack this capacity, even though clear and convincing evidence of previous patient wishes may be required in some states. Where prior patient wishes are unavailable, certain states have sanctioned the withholding or withdrawal of life-sustaining therapy if it is in the best interests of vege-tative patients, as the Wisconsin Supreme Court did in In the Matter of Guardianship of L.W . 28

As Hammond 29 noted, few cases to date have dealt with the disposition of patients who are minimally con-scious. Two cases that Hammond cited, In re Conroy 30 in New Jersey in 1985 and In re Edna M.F . 31 in Wisconsin in 1995, involved patients with severe dementia who did not have a severe TBI or hypoxic-ischemic injury, although they could be considered minimally conscious from a functional standpoint. Excluding these two cases, two others alone involve minimally conscious patients at the level of a state supreme court: In re Martin 32 in Michigan, which was decided in 1992, and Wendland v Wendland 33 in California, which was decided in 2001. In both these cases, the courts were asked to decide what level of evidence of prior wishes was necessary before a wife could remove artifi cial nutrition and hydration over the objections of other family members from a hus-band with TBI caused by a motor vehicle accident. In both cases, the husband could not walk or talk but could respond to simple commands and had previ-ously told his wife that he would not want to live like a vegetable but had not made oral or written direc-tives if he became minimally conscious. In both cases, the courts required clear and convincing evidence of the patients wishes regarding the latter condi-tion before it would allow removal of a feeding tube. Nevertheless, cases such as these only come to courts because of disputes among family members or among surrogates and physicians, and such disputes are rare. 34 As noted by Lo and colleagues 35 after the Wendland decision, families and physicians usually can and should make end-of-life decisions for patients who lack the capacity to do so on the basis of what they believe the patients would want or what is best for them, without fear of court involvement.

Social Issues

The fourth principle of biomedical ethics is distrib-utive justice: the fair distribution of medical resources. 4 After the vegetative state was described at the end of the 20th century, the personal and social value of this condition, as diminished life if not death in

the neocortical sense, was widely questioned. At the same time, because it appeared that awareness could not be restored in vegetative patients, their treatment in the ICU and other areas was considered futile by many clinicians, as discussed earlier in this arti cle. Furthermore, once the costs of caring for these patients was appreciated, Beresford 36 noted that their situation became a paradigm for how scarce medical resources were being used not for the broader public good but for patients who seemed to have little to gain from them.

The subsequent identifi cation of the minimally con-scious state has brought appreciation that chronic disorders of consciousness are far from uniform. Fur-thermore, documentation that some vegetative patients can become minimally conscious and that some mini-mally conscious patients can become more respon-sive has cast doubt on the belief that their treatment is futile, unless that term is used to describe anything short of full neurologic recovery. Finally, neuroimag-ing studies have demonstrated that some patients with chronic disorders of consciousness may be aware despite clinical unresponsiveness, and therapies such as amantadine have shown therapeutic promise. As Jox and colleagues 37 argued, these recent develop-ments should have a major impact on ethics and social policy.

Americans have never sanctioned the rationing of medical resources by any coherent system, although the public has allowed rationing by queue for citizens who have not had health insurance or ready access to health care. That problem has been ameliorated somewhat by the passage of the Affordable Care Act, but many people criticize the acts provisions for increasing health-care costs while they simultaneously decry its alleged creation of death panels to restrict health-care services, including those for people with disabilities. Although the expense of caring for thou-sands of patients with chronic disorders of conscious-ness may remain an issue in this country, advances in the understanding and management of these disor-ders coupled with the protections of the Americans With Disabilities Act make it diffi cult for vegetative or minimally conscious patients to be a target for cut-ting costs.

Some surrogates actually may request more diag-nostic and therapeutic interventions for these patients in the future, particularly if the patients are young, as Bernat 38 observed. Other surrogates may choose to limit life-sustaining therapy, especially for older patients who have not improved over time. Ideally, surrogate choice will be directed by the prognosis provided by physicians knowledgeable about chronic disorders of consciousness and by patient wishes articulated before these disorders developed. To this end, all adults should prepare advance directives to



aid in end-of-life surrogate decision-making in which they specifi cally address what kind and degree of care they would want if they became vegetative or min-imally conscious.

Acknowledgments Financial/nonfi nancial disclosures: The author has reported to CHEST that no potential confl icts of interest exist with any companies/organizations whose products or services may be dis-cussed in this article.

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