Background: Death with dignity is a basic right of all patients with advanced cancer, whereas in India, the healthcare providers have not closely examined whether the end-of-life care promotes the quality of death. The quality of death analysis can give us an insight on the impact of the disease and palliative treatment on end-of-life care. Aim: This study aims to explore the quality of death of patients with advanced cancers. Methods: A mixed method study where the caregivers (n=108) of advanced cancer patients, who expired either during hospitalization or at home, were chosen through purposive sampling and interviewed to assess the quality of death, using validated caregiver ratings of patients' physical and mental distress on a scale of 0-10, along with an open ended question. The data thus obtained was analyzed using descriptive statistics, t-test and χ2 test. The transcripts and scores were analyzed through thematic analysis and descriptive statistics respectively. Results: The mean quality of life during the final week of the patients who had expired is 4.17 (SD=2.44), while the psychological and physical health are 5.27 (SD= 2.49) and 3.75 (SD= 2.30), respectively. Almost 60% of the patients were reported to have average to good quality of life during their final week, whereas 73.1% and 52.7% of the patients had average to good psychological and physical health respectively. The physical health was found to be significantly higher among men ( P = 0.000) and among those who were aware of their prognosis ( P = 0.000). Also, patients who had expired at the hospital were found to have significantly better physical health during their end-of-life, than those who had expired at home ( P = 0.006 ), whereas, the psychological health and overall quality of life of the patients did not differ significantly between the place of death. The most commonly reported reason by the caregivers for the patients' distress was physical suffering. Pain, lack of appetite, difficulty in breathing and compromised mobility, irrespective of the site, was reported by 41.6%, 38.8%, 25.9% and 27.7% respectively. Majority of the patients (65.7%) were not aware of their prognosis, thus leading to psychological distress pertaining to anticipation about survival and worsening of physical symptoms. Despite the high distress, 60% reportedly had moderate to high quality of life in their last week of life. The thematic analysis of the transcripts resulted in seven subthemes, which were categorized under four major themes namely 'bodily discomfort', 'psychological experiences' with the subthemes moral emotions and emotional disturbances, 'awareness of prognosis' with the subthemes aware, unaware and conjecture and 'carers coping' with the subthemes perceived strain and contentment. Conclusion: Although the quality of life of patients under end of life care was perceived to be good, they suffered physically and psychologically, as reported by the caregivers.
Caregiver bereavement outcomes in advanced cancer: associations with quality of death and patient age
