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Kyle B. Enfield MD, FSHEA; Justin B. Smith, MD; Susan Aronhalt, LCSW; Chelsea Wolf, MD, MA
40-year-old man with treatment-refractory severe schizoaffective disorder is admitted to the intensive care unit (ICU) for severe necrotizing pancreatitis possibly related to gallstones. Before admission he spent a year in an inpatient psychiatric facility after which he moved to a group home. Despite aggressive psychiatric treatment, he remains symptomatic, with thought disorganization and paranoia. During his current hospital stay he experiences paranoia, hallucinations, psychotic agitation, delirious agitation, and an inability to participate willingly in an aggressive plan of care. His fluctuating mental status is associated with marked shifts in his decisional capacity from fully decisional to incapable. He is often verbally and physically aggressive and frequently refuses medications and treatments including surgical interventions. He vacillates between agreeing to an aggressive plan of care and stating a wish to forgo life-sustaining treatment. The care team and clinical consultants struggle with the issue of his decisional capacity, recognizing that successful treatment of his pancreatitis would, under the best of circumstances, involve months of intensive, acute, chronic, and rehabilitative care.
Early in his hospitalization, a psychiatric consultation was requested with the goal of reducing his psychosis and improving his ability to participate in shared decision-making and adhere to his plan of care. The consulting psychiatrists determined that it is unlikely that his symptoms will be fully controlled during this hospitalization. Their goal is safety, for him as well as for others, and diminished psychosis. Unfortunately, in the setting of maximizing his psychiatric medications he repeatedly exhibits self-injurious behavior by removing restraints, IV lines, his nasojejunal feeding tube, and an abdominal binder, as well as pulling out several surgically implanted drains. He agrees to treatments with the medical team, then often refuses them when the nurses attempt to administer them. At one point, the Patient Care Decisions Subcommittee (required by state statute to override a decisionally incapable patient’s refusal of treatment) authorizes placement of surgical drains because of sepsis and clinical decompensation. After being transferred from the ICU to a general unit with a plan of hospice care, he subsequently requests fully aggressive care, so he is transferred back to the ICU.
The patient’s family, including his brothers (his legal surrogates) and two cousins, are involved in shared decision-making. Some family members are unwilling to visit him because they find his situation too distressing. They have requested a second medical opinion. They have also asked that the patient be transferred close to home for hospice care after all aggressive treatment options have been explored.
The ethics consult service and the palliative care teams are consulted frequently about issues that include overriding the patient’s refusal of treatment given his decisional incapacity, determining realistic goals of care and a plan of care based on those goals, and responding to the patient’s and family’s demands for aggressive treatment when the team has determined that all such options have been attempted. The primary ethical issue is whether or not the patient’s psychiatric disorder, including his inability to adhere to a plan of care, is a rate-limiting step to fully aggressive treatment.
Whether the patient’s schizoaffective disorder and his inability to adhere to a plan of care preclude continuation of aggressive treatment is the central ethics problem in this case. However, there are multiple other medical, psychiatric, social, and ethical issues involved, each of which affects the course of his hospitalization.
A complex care team (CCT) approach can be particularly effective for a patient who is this medically and ethically complex. The rationale for the CCT is that a multidisciplinary team of primary and consulting providers develop consensus on a plan of care based on realistic goals of care. Communication among team members and their respective services is streamlined. Communication with the patient and family is consistent. Substantial changes to the plan of care require CCT consensus.
The patient clearly has needs in multiple clinical and psychosocial areas, so CCT members should include representatives of medical teams from the ICU, gastrointestinal service, and psychiatry, as well as nursing, social work, case management, palliative care, and ethics. Clinicians from units to or from which the patient might be transferred should also be included. The representatives form a core team; frequent CCT meetings encourage and promote coordination and communication among providers as well as a consistent and evolving plan of care during the patient’s hospitalization. This team approach draws on each member’s specialty and allows for members of the multidisciplinary teams to have a voice in the care of complex patients. One CCT member is designated as the primary communicator with the patient and family; one CCT member is designated to document the evolving plan of care in a designated medical records folder for access by all caregivers.
With such patients, it is important for the CCT to collaborate with the patient and family members in shared decision-making. In this case, the family plays an integral, though challenging, role in his care. His brothers are his legal surrogates but they are distressed by seeing him in his current condition so they are frequently unwilling to visit. Despite this, they state that “everything should be done” for their brother and request transfer to an outside hospital for a second opinion regarding his treatment. Ultimately the family declines transfer because no acute care facility is willing to accept him for further aggressive treatment, and the family is uncomfortable transitioning him to hospice.
These circumstances, particularly the family asking for an aggressive care plan despite their unwillingness to visit, raise concerns about their ability to truly appreciate the patient’s lived experience. A CCT approach allows the providers to present a cohesive and consistent plan to the patient and family in order to reduce confusion and misunderstanding. CCT providers can guide the family in understanding that they should ideally be using substituted judgement (i.e., what would the patient want) or best-interest standards when making decisions. They can also provide support as the family is asked to consider the patient’s known wishes and values while simultaneously struggling with the realities of his severe illness and its prognosis in light of his psychiatric condition and his inability to adhere to a plan of care.
Generally we elect to treat a patient’s psychiatric symptoms in an attempt to optimize decisional capacity so that he can engage in his own decision-making to the fullest possible extent. However, this case raises the question of whether a patient with a severe and refractory mental illness exacerbated by acute delirium could be expected to recover enough to make an informed decision and to participate successfully in both a short- and long-term plan of care. Certainly he has repeatedly pulled out drains, lines, and feeding tubes, seeming to indicate a refusal of care. Yet he also vacillates, at times asking for aggressive medical care. However, for this or any patient, treatment over objection with physical and chemical restraints is not a viable, long-term solution. Thus, it would be ethically appropriate to limit aggressive interventions and institute a plan of comfort care.
Indeed, out of respect for a patient’s autonomy, the least restrictive measures to provide safe and effective healthcare are required. The frequent use of restraints is traumatic for patients and often leads to moral distress among team members. A patient’s ongoing vacillation between care plans distresses providers and family members alike. Ultimately, a CCT approach fosters a strong, cohesive team in which members can consult and support one another. Thus, not only can patient care and patient/family understanding improve with this approach, but the wellbeing of multidisciplinary providers can benefit as well.