Table 1.

Exemplar cases: model case, borderline case, related case, and contrary case

Type of case	Case description	Analysis
Model (contains all key attributes of the concept)	Michelle, 9, was in the PICU for the fourth time this year, as was typical for her. Michelle had spinal muscular atrophy, and as her condition progressed, her parents, Roger and Kathy, and the health care team had frequent discussions about care preferences and prognosis. Over the course of this hospitalization, Michelle experienced worsening respiratory distress despite increased ventilator settings. Her physical function had declined to the point that she would require permanent ventilation, along with complete technological dependence. After a series of team meetings, Michelle’s parents and providers decided it was best to withdraw life-sustaining treatments to prevent prolonged suffering. The primary nurse, Suzanne, and charge nurse, Matt, worked together with Roger and Kathy to create a plan that incorporated their wishes. A CD with Michelle’s favorite music was made, and a priest from their local church performed last rites. The nurses obtained food vouchers from social workers and discussed with Roger and Kathy what sounds and sights to expect during the dying process. The nurses helped Kathy and Roger contact relatives and friends close to Michelle. Suzanne administered pain medications and solicited Kathy and Roger’s input as to whether they thought Michelle seemed comfortable. Michelle was positioned so that her mother could lie in the bed beside her, and her father sat in a large chair next to the bed, holding his wife’s and daughter’s hands. Suzanne gave Kathy some tissues after wiping a tear away from her own eye. After the ventilator was disconnected, the nurses silenced the monitors, dimmed the overhead lights, and closed the door. Suzanne sat vigil outside the room watching the vital signs on a remote monitor. When the clinical team returned to the room to pronounce the death, the group said a prayer, and the parents were given private time with Michelle. After time had passed, a hospital chaplain gave Roger and Kathy resources about local grief support groups as well as morticians to contact later, and a book about grief and loss. The nurses asked Roger and Kathy for contact information to connect them with hospital bereavement programs, as well as to send a card from the unit staff.	A good death was achieved in this case. As Roger and Kathy had been to the PICU multiple times, rapport had been established among the team and family, and a series of team/family meetings facilitated ethical concordance. Suzanne and Matt formed a bond with Roger and Kathy and incorporated their input into Michelle’s care management, helping them to retain desired aspects of their parental role. Further, the nurses worked closely with the parents and health care team to create a favorable death context while preparing Roger and Kathy, and used hospital resources to enable a peaceful end-of-life experience on a spiritual and situational level. Suzanne’s tearful yet reserved reaction to Michelle’s death validated her humanity and compassion, and the promise of follow-up contact demonstrated empathetic care as well. The realization of all these elements simultaneously fostered a good death in the PICU for Michelle.
Borderline (contains some but not all key attributes of the concept)	Kelly is taking care of a long-term PICU patient with a diagnosis of metastasized neuroblastoma for whom a planned withdrawal of life-sustaining treatment is scheduled this afternoon. She calls a chaplain to the room, and staff members from throughout the unit stop by the patient’s room to say a last goodbye. After she shares a close moment with the patient and family and ensures that pain medications have been effective, Kelly steps out of the room as the patient is weaned off of mechanical ventilation. The patient’s mother calls for Kelly, distraught from hearing her son’s rattled breathing. Following the withdrawal of life-sustaining treatment, Kelly quickly and stoically gathers supplies for postmortem care. She keeps the supplies just outside the room. However, the parents and other family have not yet left the patient care area and see these supplies. When asked what they are, Kelly does not know what to say.	This would constitute a borderline case, as situational factors have not been met. Though Kelly was helpful in mobilizing supports for the psychosocial elements of the death, she did not prepare the mother for the sights and sounds of the dying process. Further, the family was not granted time, privacy, or emotional space for acute grief responses; thus a key element of a good death is lacking.
Related (contains elements that resemble key attributes but that differ upon close examination)	A family that recently immigrated from Turkey is making decisions about their son’s life support. They do not speak English, and the hospital’s interpreter has limited availability. Although a family meeting is scheduled, the patient codes before the meeting. Cardiopulmonary resuscitation is initiated while his extended family is rushed out of the room. His parents stand a few feet from the bedside while the child is successfully resuscitated. At the family meeting the following afternoon, the parents are very concerned about why their family was removed from his bedside. Although the interprofessional team addresses this concern, other cultural and religious considerations are not discussed. When the patient dies, the family’s religious practices, including active prayer rituals, are not accommodated by the interprofessional staff.	Despite attempts to communicate and provide care in a compassionate way, key attributes of a good death were more challenging to actualize because of language and cultural barriers. It is important to use psychosocial care providers, such as interpreters, social workers, child life specialists, and chaplains to try to conduct a comprehensive assessment of families’ needs during their child’s death.
Contrary (lacks any key attributes of the concept)	A family of a child who has never been hospitalized experiences a traumatic accident. The interprofessional staff works diligently to resuscitate the child and medically manage her care. She becomes very swollen and has many medical devices. She has bruises from multiple venipunctures and an intraosseous catheter. Her chest is bruised from compressions. Her face appears to be in a constant grimace, and she cannot move because of paralytic medications used to maintain her intubation status. The clinical team and parents are aware of her fatal prognosis. Nurses, respiratory therapists, and physicians come in and out of the room every few minutes to document and assess her status. Few acknowledge the parents, who sit quietly and occasionally hold their daughter’s hand. When she dies, a nurse and a physician are in the room, silently documenting at separate computers.	No ethical framework was established for working with parents of children who are seriously or critically ill. Further, the team failed to consider the parent-child relationship or psycho-social needs. Thus, the key attributes of a good death in the PICU became difficult to achieve. The parents were not prepared for the sights and sounds of the PICU or their child’s appearance. Care of the dying child was managed solely on the basis of clinicians’ input without a holistic care management plan. From a clinical/staff standpoint, suboptimal pain and symptom management adversely affected parents’ perceptions of care at the end of life. The clinical staff seemed rushed and did not emotionally acknowledge the gravity of the family’s scenario, thereby disenfranchising their suffering and failing to achieve mutuality. Failure to meet situational needs, for example, by intruding upon a family’s privacy during and after the death, may have stifled immediate emotional grief responses. Without the actualization of the key attributes of a good death, including clinical, situational, and emotional factors, parents’ and consequently families’ bereavement process and adaptation may suffer in the long term.

Abbreviation: PICU, pediatric intensive care unit.