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End-of-Life Care for Kids Raises Ethics Issues

On Behalf of | Aug 21, 2012 | Medical News You Can Use

Healthcare providers should have rapid access to legal remedies for end-of-life disputes involving children whose parents resist withdrawal of aggressive therapy on the basis of religious beliefs, authors of a review concluded.

Over a 3-year period, 17 of 203 cases could not be resolved after lengthy discussions with parents. Subsequently, most of the cases were resolved, but five remained undecided, each because of the parents’ belief in a miracle for their children, according to an article published online in the Journal of Medical Ethics.

“On the rare occasions that it occurs, fervent belief in religion and the interpretation of those religious teachings are significant factors in end-of-life conflict between parents and staff on pediatric intensive care units (PICUs),” Joe Brierley, MBChB, of Great Ormond Street Hospital for Children in London, and co-authors wrote.

“Protracted dialogue was often unable to resolve these differences, while the child was subject to pain and discomfort from invasive ventilation, suctioning, and multiple injections,” they added. “We suggest it is time to reconsider current ethical and legal structures and facilitate rapid default access to courts in such situations when the best interests of the child are compromised in expectation of the miraculous.”

Variety of Religious Views Involved

To acknowledge the widely divergent viewpoints on the subject, the editors of BMJ took the unusual step of publishing four commentaries about the article, all written by faculty at the University of Oxford. All found fault with the authors’ findings and suggested alternative routes to conflict resolution, including legal, societal, and religion-oriented remedies.

Brierley and co-authors undertook a retrospective review to examine the role of religious beliefs in discussions of end-of-life care for children. During the 3-year period reviewed, 290 deaths occurred in the Great Ormond Hospital PICU. In 203 cases, the medical team recommended withdrawing or limiting invasive care as being in the best interest of the child, and parents agreed with the decision in all but 17 cases.

Review of medical notes for the 17 cases showed “a predominant theme of expression of strong religious belief influencing the family’s response to the critical illness of their child.” In six cases, additional discussion about the best interest of the child led to a resolution.

In the remaining 11 cases, protracted discussions ensued, centering primarily on the parents’ religious beliefs about the sanctity of life. Five cases were resolved with help and support from additional hospital staff and local religious leaders, which discussed the child’s care with the medical team.

All six of the unresolved cases underwent ethical review, received second opinions, and were discussed at length in meetings involving the medical staff, the patient advocacy service, and the parents. One case was referred to the High Court, which ordered withdrawal of care.

The original 17 cases represented all major religious faiths, including Protestant, Jewish, Muslim, and Roman Catholic. Of the five cases that were never resolved, “Christian fundamentalist churches with African evangelical origins features most frequently, though other religions also featured.”

“All these families were explicit in their expectation of a ‘miraculous cure’ for their child, and as such, all felt that medical scientific information was of limited use,” the authors wrote. “Although ongoing daily dialog continued between the family and the teams, there was no change in the family’s view that aggressive support must always be continued, waiting for God to intervene.”

Arguments on Both Sides

Brierley and colleagues acknowledged legitimate arguments against their position for more rapid legal resolution of difficult end-of-life cases:

  • The “clear legal presumption for the maintenance of life,” which can require weeks of discussion, argument, and deliberation
  • The religious view that “the suffering we are arguing to avoid is something that brings the truly faithful closer to God”

Finally, the authors touched on the societal perspective of end-of-life decision making as it affects utilization of limited resources.

“While we feel the best interests of the child in question are paramount, the interests of society  –  including the other children who might have used this valuable resource  –  cannot be ignored, especially when nonmedically indicated painful and futile therapies are continued on children due to the expectation of miraculous intervention,” they wrote.

Ultimately, arguments involving end-of-life care “revolve around the balance of sanctity and quality of life versus unbearable suffering.”

The author of one of the commentaries suggested that finding a common ground to engage parents would be a good starting point for resolving end-of-life conflict.

“Brierley et al appear to implicitly assume that miracle cures will never take place, but they do not justify this assumption, and it would be very difficult for them to do so,” wrote Steve Clarke, PhD.

“Instead of seeking to override the wishes of parents, who are waiting for a miracle, [I suggest] that a better response may be to seek to engage devout parents on their own terms and encourage them to think about whether or not continuing life-sustaining therapies will make it more likely that a miracle cure will occur.”

Legal Issues Considered

Charles Foster, BVSc, LL.B, argued that existing law already trumps parents’ views.

“One hears people talk about a parental veto on proposed treatment or withdrawal of treatment,” he wrote. “There is a de facto (but not de jure) presumption that a parent’s views on what is in their child’s best interests will coincide with what those best interests are, but that presumption is rebuttable and is very commonly rebutted.”

“The legal and ethical orthodoxy is that no beliefs, religious or secular, should be allowed to stonewall the best interests of the child,” Foster added.

An argument based on the best interests of the child misses the point altogether, according to ethicist Julian Savulescu, PhD, who argued for distributive justice, the societal imperative for appropriate allocation of limited resources.

“A better ethical ground for withholding or withdrawing life-prolonging treatment is not that it is in the interests of the patient to die, but rather on grounds of the limitation of resources and the requirements of distributive justice,” he wrote. “Put simply, not all treatment that might be in a person’s interest must be ethically provided.”

“It has been a convenient fiction to tell patients and parents that treatment is not in their interests because we can’t face up to the elephant of distributive justice and the inevitable limitations in our medical resources,” Savulescu added. “But perhaps if we openly discussed such questions of distributive justice, we could answer them better.”

Medical ethicist Mark Sheehan, PhD, also suggested that Brierley and colleagues incorrectly categorized end-of-life conflict as a religion-derived issue while ignoring well established ethical and legal arguments.

“Religion here is a red herring,” he wrote. “I do agree that society  –  perhaps in the form of legal precedent  –  does need to be clearer about the limits of parental choice in these difficult cases, but the specification of these limits will not include reference to religious belief.”

“The focus should remain on the well-articulated ethical reasons that apply to all, not on whether the parent claims a specific kind of religious reason,” Sheehan added. “What matters is that, like the blood transfusion case, society has judged that there are no reasons (religious or otherwise) that warrant failing to transfuse children. Polarizing claims about religion are unproductive.”

The situation in the U.S. differs from that in England in several respects, said Howard Brody, MD, PhD, director of the Institute for the Medical Humanities at the University of Texas Medical Branch in Galveston. Notably, England has a national health system, which focuses more attention on resource allocation.

Additionally, the U.S. is a more religious nation than England. The healthcare and legal systems probably afford more leeway concerning parents’ religious objectives to ending life. Brierley and colleagues did not dismiss parents’ religious views entirely, but placed more emphasis on the patients’ welfare and resource utilization.

Authors of a recent article referenced by Brody concluded that “belief in miracles is found to be common n the United States and is an important determinant of how decisions are made for those with advanced illness. There is a growing amount of evidence that suggests end-of-life outcomes improve with the provision of spiritual support from medical teams, as well as with a proactive approach to medical decision making that values statements given by patients and family members.” (J Pain Symptom Manage. 2011; 42:119-125)

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