Readers are invited to submit cases that have led to ethical questions or conflicts, or those that caused moral distress. The Society of Critical Care Medicine Ethics Committee will solicit analyses authored by qualified ethics consultants with expertise in critical care environments. Through this process, we hope that readers will gain a better appreciation of ethical issues facing critical care clinicians, intensive care unit patients, and families or surrogates of critically ill and injured patients. We believe that readers will also develop a richer understanding of the role of healthcare ethics consultants and become more comfortable in using local ethics resources.
A 40-year-old woman with a history of chronic abdominal pain was diagnosed with a paraesophageal hernia and underwent an uneventful surgical repair. Several days after discharge, she presented initially to an outside hospital and then transferred to our intensive care unit (ICU) in septic shock from an occult gastric perforation due to an area of gastric ischemia. Despite initial surgical source control, her abdominal sepsis and ICU course was lengthy and complex. She developed multiple organ failure and, due to chronic metabolic derangement, was severely encephalopathic and never capable of participating in her care decisions. Because of a poor or often inconsistent clinical exam, pain control was difficult to assess throughout her course and concerns were often voiced that she appeared to be suffering. As the patient did not possess an advance directive nor did she clearly state health goals prior to any hospital admission, her father was placed in the position of surrogate decision maker. Over the course of weeks, then months, her course was complicated by multi-drug-resistant gram-negative pneumonia and gastrointestinal hemorrhage requiring endoscopic and catheter-based embolization therapy. Once acute sepsis evolved into chronic critical illness, acute organ dysfunction transitioned to permanent failure.
Over a period of four months, the ICU team coordinated care between the primary surgical service and various specialists (nephrology for renal replacement, gastroenterology, and infectious disease). There were ongoing significant differences of prognostic opinion between the primary team and the ICU service. Nursing feedback indicated that mixed messages were communicated to the family over the weeks. The surgeon tended to deliver an optimistic prognosis with the premise of providing hope to the family. The consultants and the ICU team consistently provided a more dismal prognosis.
As time passed and the patient’s clinical condition remained unchanged, the surgeon asked to be the primary communicator with the father, and the ICU team was asked to assume a secondary role in communication. Similarly, the nurses were asked to limit communication to the family so that one consistent message could be delivered to the family. In the final weeks, and after multiple inter-team meetings and family conferences, the ICU team expressed feelings of moral distress once they believed that the patient’s condition was non-survivable, stating in one progress note:
“We are prolonging her suffering and dying process with no discernable benefit. This process is morally distressing to all caregivers involved as there is no positive outcome and only continued suffering.”
At this point, an ethics consultation was obtained. Ethics committee representatives attended family conferences but each meeting concluded with a plan to meet again, never bringing resolution to the issue that prompted the meeting. Ultimately, after a final episode of recurrent sepsis, the patient was transitioned to comfort care and died peacefully surrounded by her family.
The primary ethical concern in this case is whether the patient is receiving potentially inappropriate treatment.(1) This issue arises when a patient with chronic critical illness has a prolonged stay in the ICU, and/or when the clinical team perceives that goals of care are unrealistic or not what the patient would have wanted. In this case the ICU team ultimately perceives that the therapies and interventions will not produce benefits for the patient or help her meet her goals of care.
When considering potentially inappropriate treatment, we must first understand the patient’s related values of quality of life and goals of care.(2) This patient probably anticipated post-surgical recovery and a return to her usual state of health. But post-surgical morbidities led to chronic critical illness, multiple organ failure and severe encephalopathy, limiting her ability to voice her care preferences.
This patient has lived with a chronic disease and may value interventions to extend either her life or her dying process; interventions that others may perceive as continued suffering.(2) The majority of ICU deaths result from decisions to withdraw life support, yet less than five percent of ICU patients are capable of participating in that process.(3) A narrative approach to clinical ethics would allow the team to examine the patient’s life, her “story,” and thus to help her father and the team determine goals of care consistent with her values.
For families, the medical team’s most important qualities are being a caring provider who conveys a clear message and is able and willing to answer questions.(4) The clinical team should initiate conversations about realistic options early in the patient’s course. This alleviates stress, anxiety and possible depression for decision makers.(5) In this way the father has time to consult with family members, the patient’s friends, return with questions, and feel that he is in concert with the clinical team instead of working against them to defend his daughter.
In critical care our primary duty is to our patients, but we also care for families and help them through traumatic life events. Overly rapid redirection of treatment goals from full therapy to comfort measures is often traumatic and has far-reaching effects on the family, as well as the patient.(5)
The stress of becoming a surrogate decision maker puts the patient’s father at risk for post-traumatic stress disorder (PTSD), whether or not the patient survives her hospital admission. The clinical team’s support and guidance can affect his ability to make decisions in his daughter’s best interest, as well as his own long-term outcome.(5)
This case exemplifies the difficulty of having multiple services consulting on a complex patient and the problems created when a team member attempts to limit communication by others. It is vital to coordinate a single message to the family. Mixed messages lead to breakdowns of trust. The role of the ethics team in this situation is to elicit the patient’s values and care preferences from the family, aid the clinical team in achieving consensus regarding appropriate treatment options, and facilitate communication between the family and the clinical team in establishing goals of care. The ethics team should be consulted early so that preventive ethics can forestall conflict about appropriate goals of care. Most often when an ethics consult team facilitates clarification of goals of care, issues of futility are resolved.
Moral distress (an often hidden issue) is exemplified in this case. Bedside nurses are more vulnerable to moral distress than other clinicians since they spend the most time with patients. Nurses rate “initiating extensive life saving actions” when “they only prolong death” as the most frequent cause of moral distress, and as occasioning the highest level of moral distress (measured by frequency x (times) level of disturbance).(6) Moral distress is more prevalent among nurses than physicians, and often results from a lack of collaboration and communication by physicians.(7)
This case exemplifies the need to establish goals of care early in the patient’s course and to communicate effectively in order to prepare the family for alternative options when goals cannot be met. It is rare that a true futility case comes to the fore if good processes are in place to communicate well and resolve conflict.(2)
1. Bosslet et al. An Official ATS/AACN/ACCP/ESICM/SCCM Policy Statement: Responding to Requests for Potentially Inappropriate Treatments in Intensive Care Units. American Journal of Respirator and Critical Care Medicine 2015; 191 (11):1318-1330.
2. Burns et al. Futility: A Concept in Evolution. Chest 2007;132:1987-93.
3. Prendergast TJ et al. Increasing Incidence of Withholding and Withdrawal of Life Support from the Critically Ill. Am J Respir Crit Care Med 1997;155:15-20.
4. Jurkovich GJ et al. Giving Bad News: The Family Perspective. J Trauma 2000;48(5):865-873.
5. Tyrie LS et al. Care of the Family in the Surgical Intensive Care Unit. Anesthesiology Clin 2012;30:37-46.
6. Papathanassoglou EDE et al. Professional Autonomy, Collaboration With Physicians, and Moral Distress Among European Intensive Care Nurses.
7. Hamric, AB et al. Nurse-physician perspectives on the care of dying patients in intensive care units: Collaboration, moral distress, and ethical climate Crit Care Med 2007;35:422-29.