A 17-year-old girl was admitted to the pediatric intensive care unit (PICU) after having presented to the emergency department (ED) with uncontrolled seizures. Her history was obtained from her chart and her mother, who was a poor historian. According to the mother, the patient had normal development until two years before admission, when progressive loss of function began. Workup was negative. Four months before admission, she had been admitted with status epilepticus to a different hospital. After a three-and-a-half-month stay, she was discharged to a subacute rehabilitation facility with a goal of training the mother in gastrostomy tube feeding before discharge home, which had been scheduled for the day after she was admitted to our facility. Seizures were controlled with a ketogenic diet and valproic acid. Before the initial hospitalization, she had lived at home with her mother and stepfather.
At the subacute rehabilitation facility, she received rectal diazepam and enteral lorazepam without seizure resolution. In the ED at our facility, her seizures were controlled with medication, and she was admitted to the PICU. She was nonverbal, had spasticity of all extremities and was dependent for all needs.
In the PICU, she continued to have frequent generalized tonic-clonic seizures associated with hypoxemia, despite multiple standing medications as well as breakthrough medications. Throughout her hospital stay, her mother expressed concern about antiseizure medications, believing that the medications were making the seizures worse. She objected to the medications that nurses were giving during prolonged seizures and tried to refuse medication dose increases.
The PICU team had multiple meetings with the mother in an effort to resolve her concerns. Social work was actively involved, and a palliative care consult was obtained. The mother believed that the patient would do better at home, where the mother wanted to slowly wean all antiseizure medications. Although the mother was very intelligent and had done a significant amount of research about treatment options for seizures, she was not able to accept standard medical treatment. She was difficult to work with, not because she challenged the medical information she was given, but because she was unable to discuss it in a reasonable manner and dismissed many explanations without rationale.
When the mother was given information that she did not want to hear, she would become angry out of proportion to the situation, leading people to be fearful of her. Her behavior sometimes escalated quickly and became explosive. When she perceived that someone did not agree with her or would not concede to her, she would avoid any further interaction with that person. As a tall, assertive woman, she was physically imposing. She was aggressive at times. She was evasive when asked about the patient’s past medical history and gave conflicting information. The patient’s biological father was deceased; her stepfather was physically present in the unit but did not actively participate in decision making. He acceded to the mother’s decisions and was not helpful to the staff in negotiating with her.
When the palliative care team tried to establish realistic goals of care with the mother, she was unwilling to talk about the poor neurologic prognosis or the chance that the patient might not survive long term. Her only goal was to have the patient become stable enough to go home so that she could wean the antiseizure medications and pursue alternative therapies.
The PICU team was concerned that the patient’s mother lacked capacity to make decisions about the antiseizure medications and other aspects of the patient’s care because some of her thought processes did not seem to be based on reality. Despite increasing doses of antiseizure medications, the patient continued to have frequent seizures that led to transient, but significant, hypoxia. An ethics consult was obtained to determine whether the mother was decisionally capable and whether she was acting in the patient’s best interests.
An ethics consult was requested to address the mother’s decision-making capacity (DMC), and whether she was acting in her child’s best interests. These questions reflect tensions surrounding a professional duty to protect a vulnerable patient, difficulties maintaining a therapeutic alliance when a parent’s goals differ from those of the care team, and the complexity of decision-making when assessments of best interests and harms are unclear. In addition, it is important to acknowledge that ICU staff are significant advocates for the patient, but are not the only advocates.
Limits of Parental Authority
Parents have authority to make medical decisions for their children.(1) This authority is not absolute; parental decisions should be guided by the best interests of the child.(1) The harm principle guides limits of parental decision-making—parents’ authority may be restricted if decisions or behaviors place a child at substantial risk of harm.(2)
Threatening or aggressive behavior by the parent toward the care team causes concern. If this behavior leads to harm by interfering with medical care, it is ethically supportable to engage in limit-setting. Truthfulness requires that consequences for out-of-bounds behavior be clearly stated and followed.
Similarly, concern that future decisions or actions will place the child at risk of harm obligates clinicians to ask a child protection agency to determine whether the mother’s custody should be removed or whether she should be supervised outside of the hospital setting. In this case, either knowledge of harm from past actions or inactions, or concern that the mother’s future decisions may place the child at risk, would warrant reporting.
Parents must possess the capacity to understand and appreciate complex information in order to make sound decisions for their children, whether or not their conclusions are in line with medical recommendations. Any physician can determine DMC, using Appelbaum’s criteria for medical DMC: 1) understand the information, 2) appreciate the situation and its consequences, 3) reason about treatment options, and 4) communicate a choice.(3) If a physician deems that the mother lacks DMC and this may harm the child, reporting to a child protection agency may become necessary.
What Is Best for this Patient?
A difficulty in this case is lack of clarity about what is best for the patient—continuing seizure treatment that has not proven beneficial, or transition to a home setting with some efforts to diminish the discomfort of seizures. Hence, it is difficult to know what would reach a harm threshold for state intervention.
It appears that the patient’s prognosis is poor, that she is not expected to survive long, and that seizures continue despite intensive medical management. She has severe neurologic injury, apparently with no hope of improvement, is noncommunicative, will be care dependent, and is likely to suffer. One could argue that she would benefit most from ensuring that the time she has left is as comfortable and as free from suffering as possible. This is not meant to minimize the worth of her life, but to stress that clinicians have a duty to minimize suffering. This may mean that what intensivists have to offer may not be what is best overall for this patient, and that removing her from her mother’s care may take away her ability to receive comfort from that relationship.
Resolving the Tension: Practical Recommendations
The medical team appears to be shifting toward a focus on patient comfort, but still believe that continued treatment with antiseizure medication is indicated. The mother seems not to trust medical recommendations, wants to use alternative therapies, and wants to stop antiseizure medications. This fundamental disagreement places the team in an untenable position, in which a parent’s wish to continue curative treatment with an approach that may promote more rapid deterioration or death in effect asks the team to provide treatment that they feel to be professionally substandard.
If the team is convinced that the patient’s prognosis is truly dismal—whether or not the mother agrees with this prediction—it is ethically supportable to explore approaches that honor the team’s duty to ensure reasonable care outside an ICU setting. Such an approach would promote the patient’s comfort in a professionally responsible way, avoid separation of the patient from her mother, and maintain a therapeutic alliance once the patient leaves the ICU.
Healthcare professionals caring for vulnerable patients are obligated to offer choices that they believe are reasonable and achievable, and to try to provide protection from avoidable harms. For example, the team may explore whether there is a professionally acceptable compromise involving preparation for discharge home with conditions that are monitored by home care professionals and potentially by child protection agencies. Transparency about professional obligations to report potential neglect remains important, as does providing oversight that may help avoid discomfort in the home setting. Barriers to finding providers willing to work with this family in the home setting may preclude this option, but an effort to look may help the mother understand that options may be limited, and may result in investigating other possibilities. Throughout this process, attention to reasonable, realizable approaches to this unfortunate patient’s care and comfort should be maintained.
1. Buchanan AE, Brock DW. Deciding for Others: The Ethics of Surrogate Decision Making. New York: Cambridge University Press; 1990.
2. Diekema DS. Revisiting the best interest standard: uses and misuses. J Clin Ethics. 2011 Summer;22(2):128-133.
3. Appelbaum PS. Clinical practice. Assessment of patients’ competence to consent to treatment. N Engl J Med. 2007 Nov 1;357(18):1834-1840.