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When Parents Act Before Clinicians Are Ready

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William Sveen, MD, MA; Nneka Sederstrom, PhD, MPH, MA, FCCM

Case Study
A 4-year-old girl with a complex medical history, most notably Hirschsprung disease and genetic hydrocephalus, status post ventriculoperitoneal shunt, presented to a palliative care clinic. Her mother was concerned about her daughter’s worsening nausea and abdominal discomfort. Shortly after birth, the patient had undergone a Soave procedure. Oral aversion and gut dysmotility led to gastrostomy and Nissen fundoplication, a gastrojejunal feeding tube, and then central access for total parental nutrition (TPN). Most recently she underwent ileostomy for continued intestinal failure. She no longer tolerates enteral nutrition. She has severe global developmental delay, spastic paresis, and refractory epilepsy. Her mother believes that her daughter’s discomfort is caused by the TPN. She asks the palliative care clinician whether the TPN can be discontinued and her daughter be transitioned to hospice care. The father agrees but is minimally involved in his daughter’s care and defers to the mother. The palliative care team requests an ethics consultation to determine whether withdrawing nutrition and hydration is acceptable.

The mother clearly states that her daughter’s symptoms and suffering have increased and believes the TPN is the source of her increased retching, emesis, and distention. She considers the burden of invasive, life-sustaining therapy to outweigh the benefits of continuing aggressive treatment in a child without options for a cure or long-term improvement. She understands that discontinuing the TPN will lead to her daughter’s death.

The patient’s primary outpatient providers have observed her playing with toys, making herself laugh with a mirror playing with a doctor’s stethoscope, and interacting with others and her environment. These actions have made some of her providers uncomfortable with the request to withdraw nutrition and hydration; they believe that the request may be premature.

Some clinicians have also expressed concern that the mother has a history of exaggerating and misinterpreting the cause of her daughter’s symptoms. Examples include an admission for seizure activity but no correlating EEG changes with monitoring, symptoms improving rapidly on admission to the hospital, and the long-standing complaint that TPN causes abdominal discomfort despite a lack of mechanistic explanation from gut motility specialists. These clinicians have expressed concern that the mother exhibits maladaptive coping and may inappropriately view hospice as an option for further resources or respite care.

None of the clinicians feel that the mother has been intentionally neglectful or abusive or that child protective services should be involved. Child protective services was involved earlier in the patient’s life over concerns that the mother was committing medical child abuse in her aggressive pursuit of treatment for her daughter, but investigators found no evidence of malicious intent. Furthermore, multiple providers within the same health system have performed progressively more invasive procedures to treat the patient’s intestinal failure.

While the ethics team was collecting information, the mother decided that her daughter’s symptoms were progressing and discontinued TPN herself (but did not discontinue IV fluids for hydration). She called the palliative care team to ask that her daughter be enrolled in hospice. The palliative care team did not see this as a defiant or negligent decision but rather as an act of frustration and in accordance with what she believed to be in her daughter’s best interest. The ethics consultant agreed. TPN remained off, and IV fluids were slowly discontinued. Surprisingly, the patient required a much lower dose of opioids and benzodiazepines after discontinuing the TPN. She died comfortably in her home.

Ethics Analysis
The American Academy of Pediatrics considers medical nutrition and hydration a therapy that can be withheld or withdrawn in limited circumstances, similarly to other interventions such as mechanical ventilation and medical resuscitation. The circumstances in which forgoing nutrition is acceptable fall into two general categories. The first (narrower) category includes patients with irreversible unconsciousness who do not experience suffering from forgoing nutrition, making this an acceptable option for the family. The second (broader) category includes patients for whom providing medical nutrition would cause disproportionately more harm than benefit. For example, providing medical nutrition, whether enteral or parenteral, to an actively dying child who lacks the desire to eat is unlikely to extend life expectancy and may cause significant discomfort and stress at the end of life. A third category, briefly described, is total intestinal failure in which TPN or a small bowel transplant is required to sustain life.1

This patient had total intestinal failure, and her mother clearly stated that the burden of continuing TPN outweighed its benefits. Furthermore, no treatment for her daughter’s intestinal failure, whether TPN or even a much riskier small bowel transplant, would resolve the underlying pathology causing her many physical deficits. TPN is not a benign intervention; its risks include liver failure, fluid overload, edema, skin breakdown, infections, electrolyte imbalances, thrombosis, and nutritional deficiencies, especially when enteral nutrition is not tolerated.2 Although no mechanism accounts for how TPN would cause nausea and emesis (since it does not enter the intestinal lumen), the mother’s request was honored because of the inherent risks of long-term TPN. She framed the request in a way that was scientifically uncomfortable for medical professionals, but forgoing medical nutrition and hydration is not an unreasonable request even if the TPN is not directly causing the increasing symptoms. The improvement of the patient’s symptoms after stopping TPN, while difficult to explain, may indicate that the mother correctly interpreted that TPN was associated with her daughter’s discomfort.

Similarly, some clinicians’ concerns that withdrawing TPN was premature (since the patient was more than minimally conscious) did not outweigh the justification for withdrawal based on intestinal failure. In fact, her ability to interact with her environment quite possibly also allowed her to experience suffering, validating the need to consider the mother’s belief that the burden of continued TPN to her daughter outweighed the benefit. With access to highquality palliative care and hospice, symptoms concerning for increasing suffering or starvation can be readily prevented.

In regard to the concerns that the mother may be exaggerating or exhibiting maladaptive coping, she repeatedly explained to the palliative care team and the ethics department that her daughter’s symptoms, not a lack of support, were the reason to withdraw the TPN. While some may interpret the mother’s decision to discontinue the TPN herself as defiant or negligent, her continued communication with the palliative care team suggests that her action, even if misguided, was motivated by frustration and a desire to help her child. No clinicians advocated involving child protective services. Given the previous concerns that the mother was overly aggressive in pursuing life-sustaining procedures for her child, suggesting now that her decision to withdraw nutrition should be considered neglect would be an ironic shift. Instead, the mother communicated multiple times that she believed she had crossed the line from performing procedures for her daughter to performing procedures to her daughter, a stance that some clinicians believed previously when the patient was undergoing multiple surgeries. Altogether, no reason was found to suggest that the mother was an inappropriate decision-maker for her child. 

1. Diekema DS, Botkin JR, Committee on Bioethics. Clinical report—forgoing medically provided nutrition and hydration in children. Pediatrics. 2009 Aug;124(2):813-822.
2. Glover JJ, Caniano DA, Balint J. Ethical challenges in the care of infants with intestinal failure and lifelong total parenteral nutrition. Semin Pediatr Surg. 2001 Nov;10(4):230-236.