Electroconvulsive therapy (ECT) continues to be the most effective and arguably the safest treatment for mood disorders.1–3 Despite its exemplary efficacy and safety records, ECT is one of the most vociferously opposed treatments in medicine presumably because of the stigma attached to it.4 Numerous myths and misconceptions about ECT prevail among both the public and professionals. The stigma attached to ECT is one of the greatest hindrances to its practice.
Family members play a vital role in the decisions of patients. Traditionally, health services do not encourage family attendance in treatment rooms for various reasons, such as a potential collapse of the attendee, interference with treatment, medical teaching and instruction to junior doctors, fear of litigation, and staff anxiety induced by family presence.5 Family presence during various treatment procedures has been extensively studied.6–9 The results do not support the widely held concerns. They are instead overwhelmingly positive and reassuring. In one of the first studies, family members favored the policy of family attendance in resuscitation rooms and appreciated the procedures and the effort from the staff.6 Contrary to what one would expect, a randomized controlled trial demonstrated significantly fewer incidences of anxiety symptoms and posttraumatic stress disorder in family members who attended cardiopulmonary resuscitation compared with those who did not. There was no significant difference in the survival rates between the groups, interference with treatment, or litigation.
Family-centered ECT has recently gained more attention as an approach to promote family participation in ECT.10 While pharmaceutical industry spent 30% to 50% of their income for education and promotion, the concerted activities on ECT education have been meager.4,11 Furthermore, movies and media have hampered dissemination of ECT knowledge. One study surveyed the attitudes of medical students before and after watching 5 movie clips portraying ECT. The clips were from Return to Oz (Walt Disney Pictures, 1985), The Hudsucker Proxy (Warner Brothers and Silver Pictures, 1994), Ordinary People (Paramount Pictures, 1980), One Flew Over the Cuckoo's Nest (Fantasy Films, 1975), and The Beverly Hillbillies (20th Century Fox, 1993). The clips depicted unmodified ECT, doctors discussing indication for ECT, and inappropriately described side effects of ECT such as becoming a “zombie.” After watching the movie clips, the students reported that they would dissuade a family member from having ECT.12 Research into the attitudes and beliefs of family members of patients receiving ECT has started recently. Grover et al13 demonstrated improved knowledge and favorable attitudes in families of patients treated with ECT compared with families with no patient receiving ECT. Other authors observed a positive view of ECT among families after the treatment in comparison with the attitude they had before treatment.14 A study from Hong Kong reported favorable attitudes of families upon completion of ECT, although they were concerned about the memory impairment from the treatment.15 The first report of family presence during ECT was published in 2005, and it was largely narrative.16 In this report, we present the first systematic data of family presence during ECT.
MATERIALS AND METHODS
From January 2017 to May 2018, consecutive patients who received ECT at a geriatric psychiatry center were approached for their consent to allow family members to be present in the ECT room during treatment. The ECT coordinator discussed the project with all potential participants, and they were given the Participant Information Form. The inclusion criteria for patients were age older than 18 years and informed consent to allow the family member to be present during ECT. Inclusion criteria for family members were age older than 18 years, consent to enter and witness ECT, agreement to leave ECT room upon request by the doctor in charge of ECT, and consent to receive first aid in case of an adverse reaction. The following exclusion criteria applied: patients who had no capacity to consent, conflicts between the patient and family member, medically unstable family members, the first ECT session, and more than one family member at a time. Family members were briefed about their entry to the ECT suite. A general educational DVD of ECT was available for family members as an option. The ECT video showed patient preparation including insertion of the bite block, the ECT suite, the ECT machine, administration of stimulus, and mild clonic movements. Family education lasted for 15 minutes and focused on what ECT entails. Family members were informed that ECT would be a safe procedure that lasts for 15 minutes in most circumstances. They received further information about short anesthesia that would precede electric stimulation. The session instructed family members about modified convulsions. They were briefed that ECT may be followed by postictal confusion and agitation. The requirement for close monitoring in a recovery room was also conveyed to the potential participants. Patients were not present during the education session for families.
Project Design and Logistics
This was a prospective design where family members were recruited over 17 months. The ethics committee of Eastern Health provided ethical approval for the study. During the treatment day, patients received ECT as usual. Only one family member watched ECT in a day. The patient with a family member was the last to have ECT so that privacy and confidentiality of other patients were maintained. All participants entered the treatment room with the patient and exited when the patient was taken to the recovery room. A designated staff member oversaw the family member and offered support throughout the stay in the ECT suite. The treating psychiatrists and anesthetists explained the procedure to participants. After completion of the procedure, the family members were asked to respond to a questionnaire regarding their experience of watching ECT. Families received education about pre-ECT evaluation but did not take part in the pre-ECT preparatory procedures, nor did they remain in the recovery suite to preserve the confidentiality and privacy of other patients.
From January 2017 to May 2018, 69 patients received ECT. After consenting and applying inclusion and exclusion criteria, 21 family members attended ECT. Although all consecutive patients were approached, many of them had no family members available, and some patients refused to give consent for family members to attend. Families of three patients declined the offer of ECT attendance for reasons that were not documented. We recruited the remaining families for ECT attendance. Family members attended only one treatment. Two family members opted to watch the ECT DVD. The participants were spouses and children of patients.
There were no adverse incidences such as a collapse in the ECT room or extreme distress to the family member warranting premature exit from the ECT suite. There were no instances of litigation or interference with treatment. All participants cooperated with the instructions from staff. The ECT sessions proceeded as usual without any adverse events. Family members were receptive to the demonstrations of treatment procedures. All family members who watched ECT completed the survey questionnaire.
A majority (76%) of family members perceived the idea of ECT attendance as reassuring, whereas a minority (18%) indicated that it was anxiety provoking (Table 1). One participant rated it as uncertain. Five (24%) felt distressed while watching the procedure, whereas 16 (76%) rated their experience as comfortable or rewarding. A clear majority responded that watching the procedure alleviated their fears of ECT or provided transformative knowledge, whereas a minority indicated no change in their attitude toward ECT (71% vs 29%). Additional comments and feedback from participants showed further impact. In contrast to previous knowledge, beliefs, and attitudes, after observing the treatment participants realized that ECT was an organized and short procedure; it was professionally administered; the procedure was reassuring; and the staff members were informative, sensitive to the feelings of families, and supportive. Before watching ECT, participants believed that the procedure was harsh.
Most of the participants recommended watching ECT to other family members, whereas a minority was uncertain about their opinion (62% vs 38%). Except for three participants who were uncertain, all family members believed that patients benefited from ECT. Two family members who initially viewed family presence as anxiety provoking later rated their experience as rewarding and fear attenuating. Likewise, one family member who felt distressed in the beginning rated the experience as helpful in alleviating fears about ECT upon completion.
To our knowledge, this is the first systematic study of family presence during ECT. Evans and Staudenmier16 previously reported family presence during ECT and described procedures on 6 patients with a family member present. Their experiences were largely positive and promising. The family attendance at ECT started with the husband of a 64-year-old woman who required his presence for calming influence. More family members, all being spouses of patients, attended ECT after that. Our results are consistent with this report in several respects. In our study, only 1 family member attended during a treatment session. There were no complaints, and the responses from the family members were favorable. Evans and Staudenmier,16 however, illustrated the active involvement of family members with ECT procedures. In their series, family members assisted with the insertion of bite block, timed the duration of motor seizure, and helped patients during reorientation. In our study, family members were not actively involved with various phases of treatment as part of the study criteria. According to the previous report, there was no adverse psychological impact on family members, but our findings suggest that a minority (n = 5 [24%]) of attendees felt distressed while watching the procedure. Overall, our results are in line with other studies that provided compelling evidence supporting family presence during treatment interventions.
A majority of family members perceived the anticipated attendance at ECT as reassuring, and few found it as anxiety provoking. Considering the historical portrayal of ECT as a barbaric and antiquated treatment, a positive view in this regard was unexpected. The fact that most family members viewed their anticipated presence in the ECT room as reassuring probably reflected their previous knowledge and prior experience of their loved ones with ECT. Some of these family members had patients who had an excellent clinical response from ECT. Such a therapeutic achievement could have influenced their view of ECT. Some participants who felt anxious and distressed in the beginning later responded that they acquired new and transformative knowledge, and the experience alleviated their fears of ECT. These observations suggest that the distress felt during observation of ECT could be transient. This is supported by the fact that all participants managed to remain in the treatment room until the procedure was over, although few of them felt distressed while watching the procedure. It is noteworthy that no family member reported that watching ECT strengthened preexisting fears of ECT notwithstanding a minority that reported no change in their attitude toward ECT. Most participants responded that they would recommend other family members to be present in the ECT room. Finally, the vast majority of family members reported their belief in the benefits of ECT. The timing of watching ECT may explain this. All patients were improving when family members attended the procedure.
The outcome of this study is in tune with previous interventions of family presence in treatment rooms.6–9 These studies and our findings demonstrate that family presence during treatment has not caused distress in most of the attendees or excess anxiety in the staff. Family presence during cardiopulmonary resuscitation and ECT, procedures that were expected to be psychologically taxing, was in fact followed by favorable responses from family members. These findings bolster advocacy programs for inviting families to the procedure rooms. In the field of ECT, family presence has the potential to mitigate stigma and facilitate its acceptance by patients and the public at large.
Several factors limit this study. We did not recruit a comparison group of family members who did not watch ECT or collect patients' experience of the presence of families in the treatment room. Patient's experience of having a family member observing treatment is definitely important in evaluating stigma. The presence of family members in the ECT room has been shown to relieve the anxiety of patients.10 The findings of this study cannot be generalized to all ECT sessions. Family presence during dose determination session has not been studied. The first session may impose additional challenges for both the treating staff and families. Because all patients in our series were improving during family presence, it is unknown how family members will perceive ECT attendance if patients make no improvement or deteriorate. Some family members declined attendance at ECT, and the reasons for refusal could not be collected. Unreported anxiety could be the reason behind refusal. The survey has certain limitations. The questionnaire contained multiple-choice responses, and it was not validated. We could not gather adequate demographic information about participants. Whether involuntary treatment status can influence the perception of watching ECT needs to be studied as we had only two involuntary patients in our cohort.
Attendance at ECT is viewed and experienced favorably by a majority of family members. There were no adverse incidences arising out of family presence during ECT. This practice has the potential to reduce stigma, promote ECT education, and advance ECT practice by increasing its acceptance.
The authors thank Dr Charles Kellner, Electroconvulsive Therapy (ECT) Service, New York Community Hospital, Brooklyn, New York; Dr Daniel O'Connor, deputy chief psychiatrist, chair of ECT Subcommittee, Office of the Chief Psychiatrist of Victoria, Australia; Drs Shama Aradhye, Ramani Sivakadadchan, Vahid Payman, Mark Sandford, and Dr Richard Ranger and Scholastica Adams, Psychiatry of Old Age, Eastern Health, Victoria, Australia.
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