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Jessica Turnbull, MD, MA
Alexander A. Kon, MD, HEC-C, FAAP, FCCM
Marcus is a 19-month-old male infant with hypereosinophilia due to hemophagocytic lymphohistiocytosis after unrelated-donor allogenic stem cell transplant. Before the transplant, Marcus’s course was complicated by diffuse cerebral ischemic infarcts, bronchiolitis, necrotizing pneumonia, Clostridium difficile colitis, Epstein-Barr viremia, and disseminated Candida infection.
Following the transplant, Marcus’s course was complicated by systemic adenovirus and Epstein-Barr virus infections, as well as brain and renal abscesses likely caused by Aspergillus. On day 4 following the stem cell transplant, Marcus was transferred to the pediatric intensive care unit (PICU) for care of acute respiratory failure due to veno-occlusive disease. During his PICU admission, Marcus required support with high-frequency oscillatory ventilation, placement of multiple chest tubes for hemothoraces, vasopressor support, peritoneal drain placement for management of ascites, and continuous renal replacement therapy. After weeks in the PICU, he developed sustained capillary leakage, leading to hypotension requiring support with multiple vasopressors and precluding fluid removal with renal replacement therapy. His mental status -- difficult to evaluate at baseline, as he was likely blind and deaf from previous cerebrovascular accidents and infection -- decompensated to the point that he was inconsolable, despite a robust regimen of sedation and medications to treat delirium.
The attending physician is concerned that Marcus is suffering and that ongoing interventions are not beneficial. Marcus’s parents, who are Spanish speakers and have limited family and social support, became angry with the physician because they believe that Marcus simply needs more time for his stem cell transplant and the antibiotics to work. The parents believe that the medical team is “giving up” on Marcus, and they do not understand why the PICU is suggesting withdrawal of life support, given that Marcus has been sick for so long.
This case is tragic. Clearly, the parents and healthcare team have been working for a long time to give Marcus the best chance possible for recovery. His parents hope that Marcus will heal and come home. His doctor, and likely other members of the team, believe that Marcus will not survive and that they are merely prolonging his suffering. Sadly, this case is not unusual.
With the rise of bioethics in the 1970s, patients became empowered to determine their own treatment. By the mid-1990s, there was a broad belief that patients and their families could not only refuse recommended treatment, but could also demand interventions not recommended by the care provider. In 1997, the Society of Critical Care Medicine Ethics Committee published a statement advising that clinicians should not offer or provide futile interventions (ie, those that provide no physiologic benefit), and that family requests for interventions that the intensive care unit (ICU) professionals believe are inappropriate (because they are of limited benefit) can be denied in ethically supportable ways.1
The Society issued a statement in 2016 clarifying that “ICU intervent ions should generally be considered inappropriate when there is no reasonable expectation that the patient will improve sufficiently to survive outside the acute care setting, or when there is no reasonable expectation that the patient’s neurologic function will improve sufficiently to allow the patient to perceive the benefits of treatment.”2 In the case outlined, not only do the PICU professionals believe that Marcus will never leave the hospital, they believe that he is suffering. Often, PICU staff may feel that they are causing suffering even if a patient appears unable to feel pain or discomfort (eg, a child in persistent vegetative state). In such cases, it can be comforting to staff to help them consider the inconsistencies in their thoughts and statements, and to understand that although life-prolonging interventions might seem inappropriate, the child is not experiencing suffering. In Marcus’ case, however, the child does appear to be suffering. When staff are forced to perform acts that they believe cause suffering, they may experience moral distress. Team members who repeatedly feel powerless to do what they believe is right are at high-risk for job dissatisfaction and burnout.
On the other hand, families may perceive the patient care very differently than ICU staff. For example, differences in perception of time may be significant between parents and healthcare professionals. A 2-week stay may be viewed by staff as a long time and, lacking a reasonable expectation of improvement, staff is often ready to limit or withdraw life-prolonging interventions after only a few days. On the other hand, parents generally perceive that time period very differently. When a previously healthy child becomes ill or injured, moving to limit or withdraw interventions after only 2 weeks often feels very fast. In such cases, it is helpful to ask staff: “If your child was hit by a car and was in the PICU, and care providers started talking about withdrawing life-prolonging interventions, how would you feel?” Helping staff empathize with parents can be powerful. In the case presented, the parents may need more time and clear communication to understand the timing of engraftment and Marcus’s overall prognosis.
In cases like this, the first step is to redouble efforts at communication. Listening to parents, doctors, nurses, and others, and empathizing with them, can help them feel heard and cared for. Active listening skills can make an important difference. Ask the individual to tell what is happening. As the person talks, simply listen. Usually, the talk is about how the person feels; if this is not offered, specifically ask, “How do you feel about that?”
Do not interrupt; simply let people talk as long as they want. Make sure you understood, saying, “What I think you said was ..... Is that right?” Once you are certain you fully understand, offer an empathetic response: “Yes, that makes a lot of sense. If my daughter was in a car accident and I felt that the doctor was giving up on her because we are poor, I would be very distrustful and angry” (which is true). Do not question the validity of their perceptions or feelings, because those are their perceptions and their feelings. Once their feelings have been validated, people are often ready to have a meaningful dialogue.
Negotiating between the parents and the team requires compromise on both sides. A qualified, trained, certified healthcare ethics consultant can be extremely helpful. To help facilities and clinicians determine who is qualified to perform ethics consultations, and to improve the overall quality of those consultations, the American Society for Bioethics and Humanities developed a certification program. Qualified individuals can obtain the Healthcare Ethics Consultant-Certified (HEC-C) certification, and clinicians can seek the assistance of those individuals to better serve families and staff.
When all of these efforts fail to produce an acceptable compromise solution, there may be no alternative but to consider unilateral withdrawal of life-prolonging interventions. The Society, along with four other critical care organizations, published a policy statement on responding to requests for potentially inappropriate treatments in the ICU. The statement outlined a seven-step process that can be integrated into an institution’s policy.3 Clinicians should not embark on the recommended process without the support of hospital administration and a formal policy.
Clinicians should also remember that patients of minority status, low socioeconomic status, and low health literacy are at risk for receiving disparate care. Institutions should have a standard policy that is applied uniformly to all cases, and any such policy should include a provision to periodically review all cases to ensure fair treatment for all patients and families.