Ethical Dilemma: Pediatric Complexologist and a Pediatric Palliative Care and Ethics Consultant.
Case Commentaries
Commentary From a Pediatric Complexologist and a Pediatric
Palliative Care and Ethics Consultant Carl Tapia, Baylor College of Medicine
Jill Ann Jarrell, Baylor College of Medicine
The case of Marcy and JR illustrates some common yet exquisitely challenging ethical dilemmas in pediatric palli- ative care, namely, those of feeding, proxy caregiving, and the principle of double effect. Here we attempt to dissect each of these issues and offer our opinion on potential interventions and management strategies.
Artificial hydration and nutrition are common in chil- dren with medical complexity (and specifically those with mitochondrial disorders), but are not without complica- tions. One review reported that up to 20% of patients with long-term tube feeding had significant leakage concerns (Chang et al. 2014). Gastrojejunal (G-J) tube placement is an increasingly common procedure in neurologically impaired children with feeding intolerance, but complications with this procedure include breakage, dislodgement, obstruction, and even death from intestinal perforation (Al-Zubeidi et al. 2013; King et al. 2013). Symptom burden from these complications can include pain, both from the potential complication and the repeated replacement of feeding tubes; fatigue, from the change in fluid and calorie balance as well as repeated visits to the health care provider; consti- pation; nausea; vomiting; rash; and caregiver fatigue.
Thus, reversible causes (such as medication side effects, obstruction, or technical malfunctions) of feeding intolerance should be evaluated and treated (Schwantes and O’Brien 2014). Then, symptom burden should be ascertained as already outlined. Also, the goals of having the feeding tube should be reassessed.
In the adult palliative care world it has long been taught that feeding tubes may be life-prolonging in select circumstances: patients with good functional status and a proximal gastrointestinal (GI) obstruction due to cancer or who are receiving chemotherapy for a proximal GI cancer, selected HIV patients, and patients with amyotrophic lat- eral sclerosis. There is no data to support that feeding tubes prolong or improve life for patients with static or degenerative encephalopathies such as dementia or stroke,
presumably analogous conditions to those of our patient, Marcy. In fact, some data suggest that feeding tubes do more harm than good in these populations with high rates of aspiration pneumonia, obstruction, pain, bleeding, and other complications (Hallenback 2009). We would need to clarify the original intention of placing the feeding tube, whether the intended goal was ever attained, whether the intended goal currently is being met, and whether the orig- inal goal of placing the feeding tube is still achievable at all. Assuming the feeding tube was placed to achieve life prolongation via caloric support in Marcy, has this goal been achieved? Is it still possible?
In this case, the caregiver objects to the placement of a G-J tube, citing fears about increasing suffering. The caregiver role as expert in her child, with insight into acceptable risks and impact on quality of life, is a central philosophy in pediatric palliative care, as is the concept that once-restorative therapies can become bur- densome as the trajectory of illness changes (Schwantes and O’Brien 2014). By this evaluation, the caregiver refusal for G-J tube placement and even withdrawal of feeding altogether are compelling if the risks of place- ment and side effects of tube feeding are significant and debilitating, and the exacerbation of feeding intol- erance is considered to be an “end-of-life symptom” (Schwantes and O’Brien 2014). From the caregiver per- spective, escalation of feeding interventions may be considered to add little benefit to the child and to cause harm (Schwantes and O’Brien 2014). Furthermore, stud- ies have validated the reliability of the parent caregiver in reporting pain in children of varying ages and even those with cognitive impairment (Chambers et al. 2003; Voepel-Lewis et al. 2002), although these studies related particularly to postoperative pain.
In pediatrics, we often believe the entire family to be our patient as we deal with the physiology of the child and the emotions, desires, and intellect of both the child and
Address correspondence to Carl Tapia, MD, MPH, FAAP, Assistant Professor of Pediatrics, Department of Pediatrics, Baylor College of Medicine, 6701 Fannin St #1730, Houston, TX 77030, USA. E-mail: ct692423@bcm.edu
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The American Journal of Bioethics, 16(2): 70–75, 2016
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parents. In this particular case, JR is Marcy’s voice and decision maker; she is in a sense our patient as well, and attention should be directed to her needs. Is JR well physi- cally and emotionally, or is she perhaps suffering from anticipatory grief as she watches her child decline? If this is indeed the case, is JR receiving any social and/or psy- chological assistance? Is her decision-making ability intact? Is she receiving enough help at home?
Shifting our focus back to Marcy, we need to know more about her ability to communicate, both verbally and nonverbally, to determine the extent to which she can express her symptoms as well as her desires and the degree to which we need to rely on JR as the proxy symp- tom reporter. One of the guiding principles of ethics is patient autonomy, which, in pediatrics, is often manifest as the concept of “assent,” which is including the pediatric patient in the decision-making process, even though the patient cannot legally “consent.” We are unclear whether or not assent can be obtained from Marcy for treatment or withdrawal thereof.
The therapeutic relationship between the family and caregiver team is undoubtedly strained when there is dis- agreement about the utility versus futility of feeding inter- ventions. Perhaps the principle of double effect could be explored with the family and health care team—is the undesired effect (failure to thrive and possible death) acceptable given that the desired effect (relief of suffering from feeding intolerance) is intended by not offering the intervention (G-J tube or withdrawal of feeds)? It is also important to discuss that worsening nutrition and possible death are not intended to directly achieve relief of suffer- ing from feeding intolerance (the undesired effects are not the direct means of achieving the desired effect, even though they may be likely to occur). However, concluding that the desired relief from suffering outweighs the nega- tives of worsening nutrition and even death requires con- sidering other less harmful options for achieving the desired effect. This may include a trial of nasojejunal feeds, hydration with clear fluids, or slowing of feeds (Morrison and King 2014).
As a point of interest, some posit that the principle of double effect is irrelevant in end-of-life care because it requires there to be a bad effect that needs justification. This is not the case in end-of-life care for patients diag- nosed as dying. Here, bringing about a satisfactory dying process for a patient is a good effect, not a bad one. What matters is that patients die without pain and suffering. This marks a crucial departure from the double-effect doc- trine; if the patient’s death is not a bad effect then the doc- trine is clearly irrelevant. A diagnosis of dying allows clinicians to focus on good dying and not to worry about whether their intervention affects the time of death (Allmark et al. 2010).
Is Marcy dying? Given her stated failure to thrive, it appears so. However, would she continue to fail to thrive if a G-J tube was placed? That is the million-dollar ques- tion. Implicit in defining the meaning of death is discern- ing the meaning of life. Given the complexity of Marcy
and JR’s scenario and the now numbered specialists involved in her care, this is perhaps best addressed by a formal ethics consultation, which would begin as we have begun here, by assessing Marcy. We would look at her, touch her, and attempt to communicate with her in an effort to understand her symptom burden as well as her desires. We would spend time getting to know JR as well and attempt to learn about their life together, perhaps with other family members and at home. We would then inquire about goals of care and try to align these goals of care to present and possible care plans.
Typically, an ethics consult is not a solitary event, but rather a series of meetings and conversations, with the fam- ily, with health care providers, among the ethics committee, and often all of these. If successful mediation, mutual understanding, and shared decision making toward a cohe- sive care plan are not attained through this sometimes lengthy process, social or legal assistance outside of the institution may be sought; however, this is reserved for the most challenging of cases and is done rarely. &
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