Perspectives of Glioblastoma Patients on Death and Dying: A Qualitative Study

INTRODUCTION

Glioblastoma (GBM) is a terminal illness and is associated with poor prognosis.[123] Brain cancer creates significant traumatic effects not only on patients but also in Asia's tightly knitted families.[34] The psychosocial needs of the terminally ill people are now matter of concern, especially among GBM patients.[4] Psychosocial manifestations such as altered decision-making, anxiety about unfinished business, withdrawal, decreased socialization, fear of loneliness, pain, meaninglessness in one's life, helplessness, and fear of death increase the severity and psychiatric comorbidity such as depression, anxiety, stress, loss of independence, loss of self, and loss of relationships.[567] Studies also show that mental, spiritual, and social needs of patients and their family members mainly death and dying issue are not explored in detail.[7] Further, coping with psychosocial, spiritual and existential, and end-of-life issues are difficult for cancer patients.[8] End-of-life care (EOL) is the term used currently for issues related to death and dying as well as services provided to address physical and psychosocial needs of terminally ill people and their family members. EOL goal is to provide comfort and supportive care during the dying process, improve the possible better quality of life, and ensure a dignified death in the last phase of life.[7]

Talking about death with a terminally ill person or trying to know about death experiences of family members has been seen as taboo; challenging and ethical dilemmas restricted professionals to elicit the issues around death and dying.[9101213] Each person's attitude is unique on death and dying. It depends on multiple factors such as age, gender, culture, and disease.[8] GBM illness creates fear of death among brain cancer patients. On the other hand, researchers had given less opportunities to discuss about GBM patients’ personal experiences, perceptions, and attitudes on death.[1112] Therefore, the current study aimed to explore the death- and dying-related concerns among GBM patients during in-patient care.

METHODOLOGY

The study adopted the qualitative approach. A total of 31 respondents were recruited from the inpatient care in the Department of Neurosurgery, National Institute of Mental Health and Neuro Sciences, Bengaluru. Patients suffering from GBM were invited to take part in the in-depth interviews after confirming the diagnosis by neuropathologist. Adult participants who expressed willingness to share their views on death and dying voluntarily, aged between >18 and < 60 years, with no history of cognitive deficits, and who were able to communicate in Telugu, Kannada, and English were recruited in the study. Nine respondents were not interested to share their views on death and dying and did not give consent, thus excluded from the study.

The data were collected in one-to-one interviews in a separate room by the primary author. These interviews were guided by open-ended questions on death and dying. The interview guide asked general questions on understanding about illness and specific questions such as personal views on death and dying. For example, could you tell me what do you understand about your illness? What are your personal views on death and dying in general? How did you feel whenever you hear the word “Death?” What steps do you take to overcome death- and dying-related fears and thoughts whenever you get in mind? What information do you need to face the fear of death and dying in day-to-day life? The above guidelines were used to ensure the data consistency across all participants. Each interview lasted from 45 min to 1 h.

Before the interview, primary author spent enough time to establish rapport with participant and checked whether participant was comfortable to share their views on death and dying. Then, interested participants were invited to take part in the in-depth interviews. Interviews were conducted in day-to-day conversational style and documented in the narrative form soon after the interview. Interviews conducted in Telugu and Kannada languages were translated into English. Observation, filed notes, empathy, and prolonged engagement techniques were used to bring the context and ensure the data accuracy. For qualitative data analysis R software (QOL, 2012) 3.0.2 was used. The thematic analysis was used for qualitative data analysis. The methodological details were already reported in earlier study[13] Though participants shared their views on death and dying voluntarily, a 20-min debriefing also carried out to prevent the further death anxiety and fears among participants. The oral and written informed consent was obtained from study participants before the study. The ethical approval was sought from Institute ethics committee (No. NIMH/DO/SUB-COMMITTEE/2012; on 15-11-2012).

RESULTS

Thirty-one GBM patients (male n = 21, female n = 10) participated in the study. They all admitted for surgical interventions at neurosurgery department. Table 1 shows the demographic characteristics of GBM patients.

Table 1 Demographic characteristics of glioblastoma patients

The emergent theme were

• Understanding about illness

• Personal views and feelings on death and dying

• Coping with fear of death and dying

• Need for early preparation to face death and dying fears.

DISCUSSION

Conscious and careful effort was made to find out the personal views of GBM patients on death and dying during hospitalization. Very few studies had given attention to elicit and discuss the death- and dying-related issues of GBM patients in the Indian context. In this connection, the current study holds the significance. There is a rapid decline in survival rates after diagnosis of GBM. GBM patients reach end-of-life phase soon when compared to other cancer patients.[2] Our study findings revealed that understanding about illness among GBM patients is poor. Psychosocial needs such as informational, educational, emotional, practical, and unmet needs are more in high-grade gliomas. One of the needs was fears related to recurrence of illness and death.[1314]

The study results further depicted that talking about sensitive issues such as death and dying was inevitable among GBM patients. Death is no longer a taboo – God is. Their first reaction of participants after hearing the word GBM caused death was fear, silence, sadness, worry, nervous, anxious, and uncertainty. Hearing cancer diagnosis is a life-changing if not a life-threatening event. Initial reaction is fear of death creases the anxiety, stress, sadness, grief, mourn and fears accelerate in patients suffering with malignant brain cancer. Studies also highlighted that death is associated with psychological threat.[11516] Meaning ascribed to the death, personal experiences, individual characteristics, contextual and cultural factors, social interactions, constant fear of death, and process of dying has severe interfere with quality of life in people who approaches death or in EOL.[17]

The study also revealed that GBM patients made attempts to cope with death and dying thoughts by being spiritual; persistent interaction, receiving respect from family members, and fulfilling day-to-day desires were main sources of coping. However, coping with terminal and malignant illness was challenging. Earlier studies reported that prior abilities no longer exist to cope after brain cancer diagnosis.[6] Yet, availability of support, family resources, personal resilience, and emotional support can help GBM patients to cope well with disease.[18]

The study highlighted the need for early preparation on death and dying for GBM patients during hospitalization. Preparing the early signs of recurrence and death, relief from pain and suffering, and how to have happy death is equally important. This finding goes in line with previous study reports that discussing with death-related issues with patients and caregivers are helpful which minimizes the fears related to death, reduces death anxiety, and maintains the self-regulation of life. Hence, death and dying preparation programs are need of the hour for GBM patients in inpatient care; yet, opportunities for discussion on the same are fewer for brain cancer patients.[1112] In spite of great fears within oneself, cancer patients have expressed greater inner strength and maintained hope irrespective of devastating experience caused by malignant brain tumors.[19]

CLINICAL IMPLICATIONS AND CONCLUSION

The study observed that discussing issues related to death and dying was challenging in the initial phase. It manifested tears and stress among GBM patients. Many patients were willing to share their views on death and dying. However, it should be handled carefully and sensitively; otherwise, it creates more psychological and emotional harm than the illness per se Therefore, psychosocial interventions on early preparation on recurrence, death and dying, fears and anxiety associated with death and dying, and coping with death and dying thoughts are recommended for brain tumor patients, in particular GBM patients in the inpatient setting.