4 themes described the experiences of patients before, during, and immediately after awake craniotomy
Prof A Palese, Udine University, Udine, Italy;
How do patients describe their experiences before, during, and immediately after awake craniotomy?
Purposeful sample of 21 patients >18 years of age (age range 20–63 y, 52% women) who had a brain neoplasm, no language or cognitive disabilities, and were to have surgery under local anaesthesia.
Patients participated in 2 individual interviews (1 on the day before and 1 on the day after surgery), each lasting 30–60 minutes. Interviews were audiotaped and transcribed. Data were analysed thematically.
4 themes described patients’ experiences of awake craniotomy. (1) Patients focused on self-preservation before surgery. They felt that having surgery under local anaesthesia was almost non-negotiable because they believed it would reduce collateral damage and prevent disabilities. However, they also felt they had an active role in decisions: “It is my role during the operation to help the neurosurgeon understand where it is dangerous to touch and where he should be operating.” Most patients were more afraid of potential movement deficits after surgery than language or speech deficits. Some felt anguish or terror, whereas others were confident of the surgical outcome. No patients talked about their prognosis, survival, or potential cognitive deficits. (2) Patients also described working out their intraoperative role before surgery. They coped with intense feelings about the surgery by using the support of family or others and doing things to prepare for surgery or distract themselves (eg, write, pray, watch television). Patients often wanted to protect their families: “The world is not only falling apart for me but also for my family. I’m keeping them out of it.” They felt emotional when imagining the surgery and were afraid of not being able to control their actions during the procedure. They focused on their own role in surgery rather than thinking about the procedure per se. Patients needed time alone to prepare for their role in surgery but also needed to spend time with family. (3) During surgery, it was important for patients to keep the situation under control. Although patients felt impotent, they concentrated on the activities of others, waited anxiously for their first task, and took on their required role immediately. Patients vividly remembered the craniotomy, including the noise, vibrations, and uncomfortable position. It was important for patients to have information during surgery. They tried to remain in control and imagine what was being done at each stage of surgery. They listened to surgical staff talking to one another, talked directly to the surgeon, and were reassured when surgeons gave positive feedback. 3 patients did not feel any pain, 1 had severe pain, and the others had moderate pain. (4) After surgery, patients focused on reassuring themselves and others. They were surprised to feel so well, although they were tired and relieved to meet with family and return to a kind of normality. They did not talk about their illness but took stock of their feelings and language or motor disabilities. They described their experience as “unreal” and “out of this world.”
4 themes described the experience of awake craniotomy for patients before, during, and after surgery: self-preservation, working out the intraoperative role, keeping the situation under control, and reassuring themselves and others.
Palese A, Skrap M, Fachin M, et al. The experience of patients undergoing awake craniotomy: in the patients’ own words. A qualitative study. Cancer Nurs 2008;31:166–72.
The moving and original article by Palese et al provides insight into the perioperative experience of patients having awake craniotomy for brain tumours. Putting aside the devastating impact of such a diagnosis, the authors explored the thoughts and behaviours of these patients as they prepared for, underwent, and reflected on this invasive experience. Before surgery, patients resisted giving in to their emotions, turning their efforts instead to galvanising themselves for the crucial role they were to play in the surgical dissection of their own brains. For these individuals, playing an active role in the procedure allowed them to deflect thoughts of fear for themselves and their families, and confront the sound of the drill, the sensation of sawing, and the fixation of their heads to the frame. Thus, impotency gave way to agency and integrity, and the unthinkable became acceptable, desirable, and a heroic feat—“like being born again.”
In documenting these experiences, Palese et al provide guidance to healthcare professionals with respect to the essential elements of psychologically endurable periods before and during surgery; the types of support that might assist individuals as they strive, before surgery, to envision their roles in the surgery; the identification of noxious aspects of the procedure that might be most beneficially mitigated; and the importance of validating patient efforts and participation in their own care.
Brain tumour treatment centres tend to view the initial resection as the mere acquisition of tissue to determine a pathological diagnosis. This study shows that the resection itself is just the start of a journey for these patients, who will undergo extensive treatment and experience multiple side effects and an accumulation of losses as they live with this disease. As such, facilitating a sense of active partnership in the “surreal” experience of awake craniotomy may help patients adjust to the reality of living with a brain tumour.