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Mayo Clin Proc. 2012 November; 87(11): 1098–1105.
PMCID: PMC3532693

End-of-Life Care Decisions: Importance of Reviewing Systems and Limitations After 2 Recent North American Cases


Two recent and unfortunate North American cases involving end-of-life treatment highlight the difficulties surrounding medical futility conflicts. As countries have explored the greater influence that patients and their representatives may play on end-of-life treatment decisions, the benefits and struggles involved with such a movement must be appreciated. These 2 cases are used to examine the present systems existing in the United States and Canada for resolving end-of-life decisions, including the difficulty in defining medical futility, the role of medical ethics committees, and controversies involving surrogate decision making.

Abbreviations and Acronyms: AMA, American Medical Association; CCB, Consent and Capacity Board; LSMT, life-sustaining medical treatment; UHCDA, Uniform Health-Care Decisions Act

During the 1950s and 1960s, medical care of the seriously ill was directed by the twin principles of beneficence and nonmalfeasance.1 Physicians (and other health care professionals) often provided treatments without assessing patient desires. Concern for legal consequences resulting from withdrawal of ventilator support was tempered somewhat after the establishment of brain death criteria. However, unease has remained when considering withdrawal from patients not meeting these criteria. Legal precedence established in the 1970s and early 1990s helped clarify some of these ongoing liability concerns. The New Jersey Supreme Court decision of In Re Quinlan held that health care providers involved in the care of Karen Ann Quinlan would not be found liable for her death if the ethics committee felt that she would not regain consciousness after continued medical treatment. Furthermore, the court held that patients or their guardians had a right to refuse treatment.1 In the 1990 case of Cruzan v Director, MO Department of Health, the US Supreme Court held that patients could refuse all treatments, including life-sustaining medical treatments (LSMTs). In addition, family members would be allowed to make those same decisions for patients who lacked capacity as long as they could establish clear and convincing evidence of the patient's previous requests or wishes.1 Although not directly suggesting that patients or their advocates could demand treatment against the wishes of health care providers, these 2 legal cases are said to have established a degree of patient autonomy inherent in American medicine.1 The 1991 court decision in the case of Helga Wanglie reflected the importance that the legal system placed on patient wishes.2 The Hennepin County Medical Center wanted to remove the 86-year-old Minneapolis woman from her ventilator after she had been in a vegetative state for more than a year. Mr Wanglie, the woman's husband, considered that life should be maintained as long as possible regardless of circumstances and that his wife felt the same.3 The judge in the case agreed with Mr Wanglie's request for continued treatment, indicating that the most important factor in the decision was who made it, not what the decision was.3 Although it might be initially construed that the court had allowed the Wanglie family to demand treatment, an appreciation of arguments for both sides may give a clearer representation. The medical center argued that the ventilator was of no beneficial value to Mrs Wanglie as it would not restore her consciousness, whereas her family saw the use of the device as a means of maintaining her life.3 As a result, the court remained clear of requiring health care professionals to provide ineffective treatment.3

Health care professionals in the United States have struggled with the importance of maintaining patient autonomy while attempting to practice under the guidance of treatments based on beneficial care. During the 1990s, the “futility movement” gained energy as a means of convincing the public that health care professionals should be allowed to use medical evidence and experience to establish which treatments are futile and ill advised.1 Two recent and unfortunate North American cases involving end-of-life care highlight the difficulties surrounding medical futility conflicts. These 2 cases serve as an introduction to the present systems that exist in the United States and Canada for resolving end-of-life decisions, including the difficulty in defining medical futility, the role of medical ethics committees, and controversies involving surrogate decision making.

North American Case Vignettes

The Case of Albert and Lana Barnes

Mr Barnes was an 89-year-old man said to be experiencing advanced dementia, chronic respiratory failure with pleural effusions, and renal failure. Dependent on tube feedings and ventilator support, he remained in need of a surrogate to make medical decisions on his behalf. A likely individual to serve as his guardian would have been his wife. However, several events forced a Minnesota probate court ultimately to conclude that an emergency guardian (Alternative Decision Makers Inc) would instead be appointed.

Mr Barnes had been experiencing deteriorating health for several years. Acting as his purported health care agent, Mrs Barnes had requested 78 emergency medical transfers and separate hospital admissions to 10 different Minneapolis and Saint Paul medical centers.4 Eight of these hospital admissions occurred in the year immediately preceding the date of the court's action. Mrs Barnes alleged that her husband's condition resulted from complications of repeatedly misdiagnosed Lyme disease.

Problems began to surface during Mr Barnes' final hospital admission to Methodist Hospital in Saint Paul. Physicians at Methodist Hospital refused to provide Mr Barnes with dialysis treatment because of his dementia and lack of hope for improvement in his condition.5 Methodist Hospital also reported that they could not find an alternative hospital in the immediate area that was willing to provide dialysis treatment. After Mrs Barnes claimed that she was the legal health care agent documented in Mr Barnes' health care directive and, thus, was appropriate in her demands for dialysis treatment, physicians at Methodist Hospital filed a petition with the court to seek relief from Mrs Barnes' continued treatment demands.

During court proceedings, it was revealed that although Mrs Barnes was appointed as the primary health care agent in her husband's health care directive executed in 1993, a revised directive was prepared 1 year later revoking the earlier directive and appointing his son as the new health care agent.4 Despite this known change, the court concluded that Mrs Barnes continued to falsely hold herself out as her husband's health care agent. Furthermore, it was revealed before the court that Mrs Barnes provided only the last page of the 1993 health care directive to health care providers reflecting her position as the health care agent. Perhaps most concerning was that Mrs Barnes had omitted any wording in the health care directive that offered specific instructions about end-of-life care, including information that, if known earlier, would have specifically limited or eliminated some of the care that she was demanding from her husband's physicians.

The court held that Mr Barnes' condition was not reversible and that no amount of medical treatment was going to affect his outcome.4 They concluded that Mrs Barnes was not acting in the best interest of her husband and had failed to advocate appropriately for her husband. As a consequence of her action, an emergency guardian was assigned by the court, thereby excusing Mrs Barnes from her self-imposed role as health care agent. Mr Barnes succumbed to his illnesses a short time after the court's decision and before any opportunity for the court-appointed emergency guardian to recommend any treatment measures.

The Case of Baby Joseph

Thirteen-month-old Joseph Maraachli, or “Baby Joseph” (as has been monikered in the lay press), has Leigh syndrome, a terminal and progressive neurologic disorder.6 The Maraachli's had a daughter approximately 8 years earlier who had the same disease; at that time, they were successful in advocating that she receive a tracheostomy procedure so that she could then be allowed to die at home.7 This time, however, a similar request for a tracheostomy for Baby Joseph to Victoria Hospital in London, Ontario, Canada, was refused. Victoria Hospital physicians argued that Baby Joseph was in a permanent vegetative state and without intact brainstem reflexes. His parents, on the other hand, alleged that he continued to respond to stimuli. Neither the hospital nor the parents disagreed on the fact that his condition was terminal. Instead, the decision to offer, or not offer, a tracheostomy would impact the duration and setting of his remaining days of life. The Maraachli's lost their argument before the Ontario Consent and Capacity Board (CCB) in January 2011. The date initially provided by the board for removal of Baby Joseph from his ventilator was stayed in preparation for review on appeal by the Ontario Superior Court of Justice in March 2011. However, on review, the Court of Justice affirmed the CCB decision.8

Dissatisfied with the ruling of the Canadian Court System, the Maraachli's then frantically appealed to various North American mass media outlets, highlighting the plight of their son and the court's denial of “lifesaving” treatment. They were effectively able to “beat the system” and achieve their goal of tracheostomy for their son by garnering the sympathy of the Priests for Life organization. Critical of his treatment in Canada, the organization admonished Canadian officials for deeming a life “not worth the trouble” before ultimately arranging for his transport to and procedure at a US facility.9 On March 13, 2011, Baby Joseph was flown from Canada to Cardinal Glennon Children's Hospital in St Louis, Missouri, where he ultimately received a tracheostomy.9 Returning to Canada after his procedure, Baby Joseph died at home approximately 6 months later.10

What is Futile Medical Treatment and How Do We Manage Related Conflicts?

Medical futility disputes of all types are identified as the top ethical health care concern affecting North American hospitals and the public.11 The medical futility dispute involving a health care professional's attempt to halt LSMT against the wishes for continued therapy is becoming more prevalent.11,12

Several definitions of futility involving life-sustaining care have been described in the literature. Included among them is care that is unlikely to produce a chance at “meaningful survival.”13(p481) A physician is “under no ethical obligation to provide futile care even when requested by patients or their representatives.”13(p481) Despite many definitions being offered, little consensus has been attained owing to the difficulty in establishing what defines meaningful survival or beneficial treatment.1 Because of the inability to meet a true definition of futile care, commentators suggest that the next phase involving discussion surrounding end-of-life care needs to involve enacting methods of improved negotiation and communication between health care professionals and patients or their surrogates regarding the topic of treatment choices.1

Health care professionals sometimes refuse requests by surrogates for continued treatment based on the inappropriate nature of certain treatment options.12 Despite no clear and reproducible determination of what encompasses inappropriate treatment, many medical professional associations have supported unilateral withholding or withdrawal of inappropriate LSMT.12 These policy statements are positioned on 4 basic principles12: (1) the medical profession establishes its own standards of professional standards of care, and these must be balanced against patient and surrogate requests for autonomy12; (2) physicians and other health care professionals feel strongly about resisting inappropriate treatment out of patient concern for suffering and pain12; (3) false hope is an unfair by-product of ongoing inappropriate treatment; and (4) inappropriate treatment affects maximum utilization of limited available resources of care.12

Pope12 described a 6-step process often used in futility resolution. First, futility disputes can often be avoided in whole or in part through early and effective communication between health care professionals and patients/surrogates. Second, a consultant or mediator may be brought in to negotiate an agreement between physicians and patients or their representatives. Third, if the first 2 systems remain ineffective, health care professionals can ask for assistance from institutional ethics committees. Fourth, when a physician believes that a surrogate's decision does not represent that of the patient or act in his or her best interest, a substitute surrogate can be requested. Fifth, when the surrogate cannot be removed or replaced, the physician may attempt to find the patient another physician or health care institution willing to assume care and comply with the patient's or surrogate's requests. Sixth, if all previous attempts at resolution have failed, physicians may unilaterally end treatment.12

Thankfully, futility disputes are often resolved through collaborative efforts and communication between health care professionals and family members.11 Recent studies show that more than 95% of futility disputes are resolved via mediated meetings involving physicians and patients/surrogates.11 When institutional ethics committees are asked to help resolve disputes, patient families accept limitations in treatment almost 90% of the time, leaving only a small number of cases of continued dispute.11

During the early 1990s, state legislators in the United States enacted statutes allowing health care professionals to unilaterally refuse treatment they consider medically inappropriate.12 To date, 10 states (Alabama, Arkansas, California, Delaware, Hawaii, Massachusettes, Mississippi, New Mexico, Tennessee, and Wyoming) across the United States have mirrored policies based on the Uniform Health-Care Decisions Act (UHCDA).12 The UHCDA has been described as a comprehensive unilateral decision statute.12 The UHCDA provides physicians the opportunity to refuse treatment that they deem medically ineffective, that acts against the conscience of the physician, or that works contrary to generally accepted medical standards.14 Medically ineffective treatment is defined as care that would “not provide significant benefit.” The UHCDA also permits denial of any type of medically ineffective treatment associated with LSMT. Next, the Act allows unilateral decisions despite clear opposition by the patient or surrogate. Furthermore, the UHCDA grants legal immunity to health care professionals when making unilateral decisions based on “good faith.”12

The UHCDA uses certain procedural processes when unilateral decisions are made.12 First, health care professionals must communicate their decision to the patient or surrogate. This is said to allow the surrogate the opportunity to ask for review or to start the process of transfer to another physician or institution that may be willing to comply with patient or surrogate wishes for continued treatment. Next, the physicians must themselves attempt to transfer the patient to another health care professional or institution. During the period of attempted transfer, the physician is obligated to continue requested treatment. If attempts to transfer the patient are unsuccessful, the physician may refuse to continue treatment requests.12 Whereas some have suggested that the inability to transfer care to another physician or institution may serve as proof of medical inappropriateness, others have argued that economic or risk management factors may dilute such assurances.12

Some states have enacted futility statutes that are less comprehensive in coverage than those jurisdictions with legislation modeled after the UHCDA.12 These “non-UHCDA”–based statutes include (1) limitations on the types of treatments effected, (2) steps taken when there remains a lack of agreement between health care professionals and the patient or surrogate, and (3) needs for narrow treatment outcome verification.12

Despite passage of state statutes that offer legal protection to health care professionals who make unilateral decisions on LSMT, many US hospitals have not developed or implemented futility policies.12 Facilities that have futility policies in place seem to rarely use them during times of conflict.12 Reasons offered for this lack of use may stem from the vague nature of the protection provided by the statutes themselves. As an example of this concern, decisions to withdraw or withhold treatment are dictated in accordance with health care standards, a concept traditionally left to juries to decide after expert witness testimony.12

Even when implemented, futility policies may be criticized for being more health care professional centered than patient centered. It is argued that decisions on “value” are largely based on physician or other health care professional measures rather than on patient criteria. Furthermore, it is opined that decisions based in part on available resource allocation are better left to more neutral parties than health care professionals and health institutions.1 The Society of Critical Care Medicine and the American Medical Association (AMA) acknowledge the difficulties in applying the concept of futility to decisions involving withdrawal or withholding of treatment.1 The Society of Critical Care Medicine argues that treatments considered futile make up a very small portion of cases and that decisions involving withholding said treatment would not have a substantial effect on resource utilization.1 The AMA, although acknowledging that the term futility would be difficult to standardize universally, does support its continued use when decided at a local level. Furthermore, the AMA advocates that due process protocols (primarily via the use of hospital ethics committees) be developed and implemented to help resolve conflicts related to futility disputes.1

On a more promising front, some futility statutes, it is believed, have provided benefit in early resolution of disputes in states having instituted such legislation.12 For example, the Texas Advance Directives Act has been described as a procedural due process–based futility dispute statute.1 This legislation allows health care professionals to request an internal ethics committee review of the patient's or surrogate's request for LSMT.1,15 If the ethics committee agrees with the physician, treatment can be suspended if the patient cannot be transported to another health care professional or facility willing to continue treatment.1,15 Patients or their surrogates have the opportunity to seek judicial review for the purpose of granting an extension in treatment.1,15 However, a judge's decision to grant such an extension must be based on the reasonable likelihood of finding a physician willing to provide for the disputed treatment.1,15 Studies suggest that in most cases submitted to the ethics committee for review, there is agreement with physicians that the requested treatment is inappropriate.1,16 In a 2007 report of a survey of Texas hospitals, 70% of ethics committee decisions were in agreement with the physician's assessment.1,16 After an ethics committee decision, 40% of families agreed to stop further treatment measures.1,16 Of the remaining cases, 44% of patients died within the 10-day period of seeking transfer and 17% were successfully transferred to another facility.1,16

The cases of Mr Barnes and Baby Joseph help highlight the continued difficulties in defining and agreement over futile treatment. Despite physician and court decisions that Mr Barnes' condition was irreversible, his wife demanded ongoing treatment for what she considered a reversible insult. On a bit of a different theme, the parents of Baby Joseph did not disagree with physicians that their son's condition was terminal but rather argued that providing a further procedure so that he could return to die at home was not futile.

The Role of the Surrogate

The rather tragic case of Mrs Barnes acting as the decision maker for her husband introduces some of the difficulties involving surrogates in end-of-life care treatment planning. Furthered by the importance of patient autonomy that plays in the United States at this time, a loss of patient capacity to make decisions does not necessarily limit the honoring of their initial wishes concerning treatment.11

Three groups of surrogates are highlighted by the process under which they gain their authority.11 Patients may designate their own surrogate in the event that they are unable to decide on their own account. Physicians may designate a surrogate if the patient has failed to do so. These decisions must be in accord with state statutes that often provide a priority list dictating the proper designate.11 Last, the court system may appoint a surrogate decision maker.11

Common law jurisdictions have traditionally enacted 2 different legal standards when deciding on LSMT: substituted judgment and best interest standard.17 The surrogate's role is to “stand in the shoes of the patient” and “suppress his or her own judgment in favor of channeling what the [patient] would have done.”11(p208) Surrogates should apply per the hierarchy of (1) patient expressed wishes, (2) substituted judgment, and then (3) patient best interest.11

Surrogates must first assess whether the patient has expressed specific instructions concerning LSMT, either written or verbal, before losing capacity. In this case, the surrogate is simply implementing a decision that the patient has already made.11 If the patient has offered no specific instructions to the surrogate, the surrogate must instead use the substituted judgment standard.11 Under this process, the surrogate needs to consider any previous statements and actions in mapping out the patient's wishes.11,18

Without adequate knowledge of the patient's expressed wishes, statements, or actions relating to LSMT, the surrogate will need to “shift her focus from the autonomy of the patient to the welfare of the patient.”11(p212) Several factors have been considere, d important in the more objective process of determining what is in the patient's best interest.The AMA Code of Ethics considers important “the pain and suffering associated with treatment, the degree of and potential for benefit, and any impairments that may result from treatment.”11(p213), 18 To better ensure that the surrogate's own values do not bias the decision-making process, the AMA suggests that any choice should fall in line with a “course of treatment that most reasonable persons would choose for themselves in similar circumstances.”11(p214), 18

Several reasons may exist for patient or surrogate insistence on continued treatment.12 Some surrogates contend that health care professionals' prognoses are often jaded by financial incentives, patient race, or socioeconomic status.12 Research validates that racial and ethnic minorities more commonly demand LSMT.12 Other reasons may include faith in available or future advances in medicine offering valuable hope.12 Religious and cultural traditions may allow hope for a miracle.12 Surrogate responsibility, as well as guilt and grief stemming from previous relationships with the patient, may impact the decision-making processes.12

Despite the belief that surrogates are always effective in representing patient wishes and values, they often fail in this role.11,19 Performance pitfalls include failure to know what the wishes of the patient may be, or even if aware, failure to heed them. Studies have found that not only do surrogates fail to accurately predict a patient's treatment wishes, but when asked to resolve disputes, they are more likely to show bias by overestimating the patient's desire for continued treatment.11 Reasons for the surrogate failing to abide by patient preferences include lack of understanding and appreciation for the medical status of the patient, surrogate depression and anxiety in serving in that capacity, an inability of the surrogate to filter out their preferences and leave those of the patient alone, and the influence of external factors, including fear of criticism from other family members, guilt, and other dubious or secondary motives.11 The case of Mr Barnes is perhaps a key example as to the external pressures that surrogates may find themselves under. Despite a health care directive naming the son of Mr Barnes as his surrogate, Mrs Barnes tampered with the document in such a manner as to not only insert herself into this position but also to contradict the wishes expressed by her husband.

Some states have enacted laws that specifically provide procedures for surrogate replacement, whereas others have made it clear that surrogates acting inconsistently have no right to patient decision-making powers. Despite information suggesting that surrogate decisions may not accurately represent patient preferences and an available judicial process for resolving this error, health care professionals remain resistant to demanding surrogate replacement. Often, instead, physician actions and health care facility policies grant surrogate wishes when initial attempts at conflict resolution fail. Overwhelmingly, health care professional decisions to forgo further action against surrogate wishes are affected by the fear of future litigation.11 Although early case law may warrant such concern, more recent legal precedent shows otherwise.11 Three categories of bases for successfully, judicially resolved surrogate replacement have flowed from the court system. Since 1995, several court decisions have been effective in replacing surrogates who have acted inconsistently with patient advance directives, in disregard of patient preferences or best interests, and in instances of material conflict of interest.11

Although health care professionals are often successful in gaining judicial agreement to terminate inappropriate therapy despite surrogate conflict, 3 broad limits enabling surrogate replacement have been described.11 First, surrogates often possess enough evidence to suggest that their decisions are in parallel with that of the patient. Furthermore, because the actual written advance directive itself may be missing, it may be difficult to prove that the surrogate's demands are not in line with those of the patient. Last, when “best interest” review is commenced, it may be difficult to then sway the “benefit-burden balance” against continuing LSMTs. The best interest balancing assessment may enable a surrogate's ability to control treatment choices. However, the best interest review may also offer the surest means that health care professionals have to counter surrogate instructions involving the continuing of inappropriate treatment.11 With no firm assessment of patient wishes available, the substituted judgment standard can no longer be applied. Instead, decisions need now be restricted to a best interest analysis. Health care professionals are believed to often be on equal footing with surrogates at this point in dispute resolution because they have clinical knowledge and experience on their side when assessing pain, suffering, and outcome analysis.11

In addition to substituted judgment and best interest, a third yet untested model has been proposed.20 Known as substituted interest, patient “authenticity,” defined as “a decision true to who the person really is,”20(p1946) is emphasized. Sulmasy and Snyder20 describe the system as one “that promotes the patient as a unique person, in the context of his or her relationships, applying the patient's authentic values, wishes, and real interests.”20(p1947) As the authors admit, whether the substituted interest model better equates to patient values while alleviating burdens on surrogates requires further study.20

As in the United States, Canadian physicians can, and do, replace surrogates. Under Canada's Health Care Consent Act, the CCB has the authority to hold hearings to deal specifically with matters including review of a substitute decision maker's compliance with the rules for substitute decision making.21 Specifically, the CCB resolves matters concerning review of capacity to consent to treatment, admission to a care facility, or use of a personal assistance service; consideration of the appointment of a representative to make decisions for an incapable person regarding treatment, admission to a care facility, or use of a personal assistance service; consideration of a request to amend or terminate the appointment of a representative; review of a decision to admit an incapable person to a hospital, psychiatric facility, nursing home, or home for the aged for the purpose of treatment; consideration of a request from a substitute decision maker for directions regarding wishes; consideration of a request from a substitute decision maker for authority to depart from previous capable wishes; and review of a substitute decision maker's compliance with the rules for substitute decision making.21

Despite having a system in place, the CCB did not enact a review process for the case of Baby Joseph. The fact that the Maraachli's (Baby Joseph's parents) did not disagree that their child had a terminal condition likely negated the need for a drastic measure by the CCB of replacing parental authority.

The Role of Medical Ethics Committees

Despite their effective rate of resolving disputes between health care professionals and patients or their surrogates, controversy exists in the use of the hospital ethics committee.22 Beginning in 1992, the Joint Commission, the largest hospital accreditation organization in the United States, required hospitals to implement a means for considering ethical issues.22 Hospital-based ethics committees have been the most common response to this requirement.22 Many are described as lacking independence, proper diversity, composition, adequate training, and proper resources to handle the ethically intensive and time-consuming tasks of futility dispute resolution.22

In his article describing the course of an 18-month-old child (Emilio Gonzales), Truog15 found fault with the hospital ethics committee and the possible bias shown with the Texas futility resolution process. The Texas Advance Directives Act has sought to resolve dispute through due process means. Any proposal by a health care professional that futile treatment be terminated must first be reviewed by the hospital ethics committee. However, as Truog points out, these intraorganizational committees may not serve the same role as a jury of one's peers in a traditional due process sense. Along with members of the community, members of the ethics committee are often made up of hospital staff. These “insiders,” as Truog calls them, may understandably be biased in their judgments.15 Although it is difficult to suggest with any certainty that unfair bias had occurred, during a 2-year cycle, 43 of 47 futility cases submitted under the procedural guides of the Texas Advance Directives Act sided with the health care professionals' assessment.15

As reflected in the process surrounding the case of Baby Joseph, the Canadian province of Ontario has enacted a special dispute resolution mechanism. Although not a traditional hospital-based model as commonly seen in the United States, the CCB is an independent body created by the provincial government of Ontario under the Health Care Consent Act. It conducts hearings under the Mental Health Act, the Health Care Consent Act, the Personal Health Information Protection Act, the Substitute Decisions Act, and the Mandatory Blood Testing Act. Board members are psychiatrists, lawyers, and members of the general public appointed by the Lieutenant Governor in Council. The Board sits with 1, 3, or 5 members. Hearings are usually recorded in case a transcript is required. Given that this process of resolution falls under government jurisdiction and control in the setting of Canadian-sponsored health care coverage, potential bias to benefit the state could be an inherent concern. However, we are unaware of any reported specific instances of such bias.

A provincial “independent and quasi-judicial” tribunal, the CCB's mission is the fair and accessible adjudication of consent and capacity issues, as well as balancing the rights of vulnerable individuals with public safety. The CCB's key areas of activity are the adjudication of matters of capacity, consent, civil committal, and substitute decision making. More than 80% of applications to the CCB involve review of a person's involuntary status in a psychiatric facility under the Mental Health Act or a review under the Health Care Consent Act of a person's capacity to consent to or refuse treatment.

In intractable treatment disputes, this “neutral, expert board” makes legally binding decisions that can be reversed only on appeal through the courts. With rare exception, the CCB has repeatedly agreed with health care professionals' recommendations and has directed surrogates to accede to such recommendations to limit treatments or be replaced. In only one such case has the CCB's determination been reversed by the Ontario Superior Court of Justice.23 In line with this judicial precedent, the CCB's decision in the case of Baby Joseph was ultimately upheld by the superior court. After the court's holding, the Maraachli's sought treatment for Baby Joseph outside the jurisdiction of Ontario.


The cases of Mr Barnes and Baby Joseph received much lay press attention in North America in 2011 because of the difficulty that parties of interest find with making uniform decisions involving end-of- life treatment choices. Whereas Mrs Barnes was demanding treatment for her husband that she believed would reverse his course, Baby Joseph's parents accepted the terminal nature of his illness and instead were seeking treatment that would allow a change of environment from hospital to home. In both instances, conflict between health care professionals and family wishes occurred, ethics boards had decided in line with physician suggestions, yet the cases required eventual court intervention. Thankfully, most medical futility disputes never require this level of intercession as most are resolved early through agreement between patients (or their representatives) and health care professionals. However, study of more contentious disputes, such as those of Mr Barnes and Baby Joseph, offer insight into the effectiveness of systems used in countries that have moved to a more patient-centrist approach to end-of-life care treatment choices.


See editorial comment,page 1040


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