Psychological Case Conference Following the Death of a Patient With Neuromuscular Disease: A Source of Emotional Support for Participating Medical Staff

Abstract

Healthcare professionals involved in the treatment and care of patients with intractable diseases, such as muscular dystrophy, increasingly encounter situations that can elicit emotional distress for them as well as the patients. Therefore, medical professionals also need support. This article describes a psychological case conference of multidisciplinary professionals involved in the treatment of a deceased patient with Duchenne muscular dystrophy. The conference aimed to support medical professionals in reflecting on and sharing their thoughts, feelings, and conflicts. Such a practice could support medical professionals in reflecting patients’ thoughts and sharing their personal experiences with other staff members, which may alleviate emotional and personal conflicts. Reflecting on their interactions and dealings with patients serves this supportive function. Psychological case conferences for medical staff may serve as an opportunity for participants to feel emotionally supported and may perhaps help prevent burnout.

Introduction

Healthcare workers involved in the treatment and care of patients with neuromuscular and other intractable diseases increasingly encounter situations that can provoke major emotional stress (1). Patients with neuromuscular disease often experience difficulties as the condition progresses (2,3). Compared to other clinical specialists, neurologists tend to be significantly less satisfied with their work–life balance and experience more frequent symptoms of burnout (4).

A case conference is a meeting where medical professionals gather to discuss matters related to a specific patient, aiming to acquire a more integrated understanding of the situation, consider care plan improvement, and explore care-related issues. An interdisciplinary case conference provides additional benefits: attendees decide on and verify their plans for the patient’s treatment and support, and they share their strategies for handling particularly difficult cases. The goal of the interdisciplinary approach is to make better decisions regarding how to treat patients and improve their prognosis (5). Although differences in knowledge among professionals could lead to communication barriers (6), an interdisciplinary conference may have potentially positive effects on care coordination and disease management (7). Interdisciplinary coordination is needed with greater frequency in especially difficult cases (8,9). Furthermore, sometimes the goals of the healthcare professionals and the patients’ desires conflict (10,11). A psychological case conference for medical staff is a form of the interdisciplinary case conference that could broaden an understanding of the condition of a patient or relationship between a patient and medical staff (12).

This article illustrates a psychological case conference for medical staff in a neuromuscular center, in which the attendees received support by sharing their private thoughts on a patient and gaining insight into different aspects of his circumstances and feelings.

Description

Twelve medical professionals participated in the psychological case conference, including the patient’s attending physician and other doctors, nurses, psychologists, and child caseworkers. One of the psychologists facilitated the meeting. This conference lasted about 90 minutes. The aim of the conference was to encourage the staff to reflect on their care and experiences about a recently deceased patient and to provide psychological support for the involved medical staff; difficulties in the medical care management of the patient had been discussed in regular case conferences.

The case was of a 32-year-old man with Duchenne muscular dystrophy. He was admitted to the hospital at age 20—where he continued to live until his death. At 27 years, he underwent a tracheotomy for poor nighttime breathing. Cardiac arrhythmia ensued shortly after the procedure. His disease continued to progress, causing surgeons to insert a gastrostomy tube at age 30. Subsequently, he expressed an intense desire to eat and drink by mouth, leaving nurses at a loss regarding to what extent they should accommodate these requests. Visiting family members snuck in fruit juice, feeding him without the knowledge of his doctors. This only came to light after the patient’s aspiration frequency increased. Given his history and risk of arrhythmia, the medical staff were concerned about the dangers of oral consumption. Ultimately, the patient died of serious cardiac arrhythmia at age 32 years.

Doctors and nurses attending the psychological case conference took turns to speak about their thoughts, feelings, and anxieties during their interactions with the patient. Each staff member had personally experienced concern or emotional conflict related to restricting patients’ wishes in healthcare settings. Compelled to abide by their professional judgments, the doctors completely prohibited oral feeding for the patient, whereas the nurses, empathizing with him, thought it would not be too bad to allow him to eat orally if he really wanted to. Everyone considered how to best respect his wishes in the little time he had remaining, but their positions as medical professionals left them no alternative but to follow best practices and enforce restrictions. However, this did not prevent them from feeling conflicted on a daily basis or from feeling that allowing the patient to eat or drink orally would make him happy. The patient’s desires were against medical restrictions, which caused great stress to both him and his attending staff.

One doctor remarked, “I think that, medically speaking, we treated and cared for this patient correctly, but the idea of ‘medicine’ is somewhat meaningless if it doesn’t ultimately lead to patients’ happiness.” While medical care should fundamentally strive for patient happiness, doctors’ first responsibility is patient survival. Prioritizing life necessitates a variety of lifestyle restrictions. Even though staff perform their duties in good faith while considering patients’ happiness, some of them may cause distress. One psychologist proposed that excessive lifestyle restrictions can result in a patient’s preoccupation with food. Perhaps, for this patient in particular, his past enjoyment of eating intensified his (and the staff’s) preoccupation with the activity. Such an understanding was constructed to facilitate reflections on the conference attendees. Conference attendees discussed the personal significance that the patient attached to eating, positing that he also felt conflicted. He knew that eating may stress his heart (among other problems); however, he may also have had the following: (i) the belief he would die if he did not eat; (ii) a basic, primitive desire to eat, inexpressible in language; and (iii) the conviction that eating was keeping him alive. Attendees also discussed how private conflicts related to performing their duties led to conflicts over the meaning of the medical profession. One attendee (physician) remarked, “The happiness of patients is a good thing, but we cannot continue working without our happiness as medical professionals. I am not telling you whether we handled this case well or not, but some of us risk burnout if we don’t come to terms with our own feelings and emotional conflicts on the matter.”

Here are some other insights about the conference that were relayed by another attendee (nurse): “Knowing the thoughts and feelings of the other staff members was a source of great relief: I felt liberated in some ways.…In some ways, I was disregarding the frustrations we inevitably encounter as medical professionals, regardless of how hard we try to avoid them. But we can’t get caught up in our own feelings either, thinking only about ourselves. I think that all of us have our own thoughts about this, but I think it’s good that we try to utilize an opportunity to articulate what we feel, inside our own minds, so that we’re better equipped to help the next patient we see.”

Lessons Learned

Discussing how to deal with issues such as those in this case can help health-care professionals come to terms with their feelings.

Psychological case conferences act as safe spaces where medical experts can share how they make decisions from professional standpoints and how these can conflict with their personal feelings about the patient’s life, as well as their private impressions.

Psychological case conferences give participants an opportunity to share professional opinions and private feelings, thereby serving as an emotional support source.

Medical professionals sometimes feel intensely conflicted when medical indications conflict with patient preferences and quality of life issues. Additionally, the patient had lived in the hospital for 12 years. The death of a patient whom physicians and nurses had known for a long time may lead to difficulties in coping with conflicting feelings and grief for the medical staff.

The case conference was a place where staff could reflect adequately and deeply about the patient. Such features may be affected by the fact that the case conference was conducted after the patient’s death. Each participant supplements his or her limited understanding of a given patient with information described by others and by encountering opposing views. Attendees learned about a patient and gained knowledge about other professionals’ viewpoints, as well as other aspects of the patient (13). A case conference may be more effective if it has certain characteristics, namely (i) providing all participants an opportunity to speak their mind; (ii) offering an atmosphere conducive to revising one’s understanding based on new ideas, rather than rigid conceptions; (iii) granting attendees permission to share their private feelings, which is unusual in official settings; and (iv) recognizing that all viewpoints and beliefs are associated with different things (12).

Medical professionals certainly reexamine their practice during the course of performing their duties, but this conference also helped them share their personal feelings and conflicts. To alleviate the emotional consequences of patient death, sharing their feelings could be beneficial for professionals (14,15). Although such practices may not be suitable for all medical staff, reducing mental exhaustion and minimizing their personal stressors in the early stages of burnout may help reduce the risk of burnout and psychological distress, which could improve patient care and support (14,16). Such conferences may be more helpful for both patients and staff when patients were alive. Measuring the impact of such a practice is required in future investigations.

Conclusions

A psychological case conference with interdisciplinary professionals can provide emotional support for medical professionals. Reflecting patients’ thoughts and sharing personal experiences with other staff members may alleviate emotional and personal conflicts. Reflecting on their interactions with patients serves this supportive function when based on a solid understanding of the patients. Psychological case conferences may serve as an opportunity for participants to feel emotionally supported and may help prevent burnout.