The last months of lung cancer patients’ lives, in the memory of their relatives. A qualitative study based on in-depth interviews with family members

Abstract

Background. The aim of the study was to assess how family members remember the final months of their loved ones 2–8 years after their death. We focused particularly on their recognition of the patients’ physical, psychosocial and spiritual needs. Methods. The family members of 45 non small-cell lung cancer patients who died up to 7 years after radical surgical treatment were telephoned and asked to meet the research team. Only 20 of them agreed to talk about the dying and death of their relatives; for the rest the issue was still too painful. During the meeting with two researchers, participants were asked to comment freely on the points of the Assessment of Dying in Lung Cancer Patients questionnaire. Results. Almost all the relatives interviewed in our study were able to recognize the beginning of the terminal phase. They connected the beginning of dying with the deterioration of the physical and/or psychological status of patients, such as the exacerbation of weakness and/or other symptoms or with clearly distinguished incidents such as cancer recurrence or hip fracture. The majority were able to define the length of this phase as being several months (median = 3, range 1–11 months). The most common physical symptoms mentioned by the relatives interviewed were, in sequential order: pain (n = 13) and fatigue (n = 13), anorexia (n = 9), dyspnoea (n = 7) and cachexia (n = 7). Of the 20 decedents, 18 regularly received painkillers at least at some period during their final months. Apart from medicines prescribed by the doctors, 9 patients were treated with “anticancer” herbs, or homeopathy, or by bioenergotherapy. From the relatives’ perspectives, the main approach was focused on the physical aspects of care while there was a lack of psychological and social support, the latter often causing severe financial burden. Most relatives believed that chaplains are the main source of spiritual comfort and there was easy access to such a service both in their parish and in the hospice or hospitals. Conclusion. Our study showed that the families remembered feelings of loneliness and helplessness when confronted with the psychological suffering of their loved ones and the financial burdens caused by the caregivers. Professionals involved in palliative care should acknowledge that holistic care requires sensitivity, not only to the physical but also to the psychosocial and spiritual aspects of end-of-life care.Background. The aim of the study was to assess how family members remember the final months of their loved ones 2–8 years after their death. We focused particularly on their recognition of the patients’ physical, psychosocial and spiritual needs. Methods. The family members of 45 non small-cell lung cancer patients who died up to 7 years after radical surgical treatment were telephoned and asked to meet the research team. Only 20 of them agreed to talk about the dying and death of their relatives; for the rest the issue was still too painful. During the meeting with two researchers, participants were asked to comment freely on the points of the Assessment of Dying in Lung Cancer Patients questionnaire. Results. Almost all the relatives interviewed in our study were able to recognize the beginning of the terminal phase. They connected the beginning of dying with the deterioration of the physical and/or psychological status of patients, such as the exacerbation of weakness and/or other symptoms or with clearly distinguished incidents such as cancer recurrence or hip fracture. The majority were able to define the length of this phase as being several months (median = 3, range 1–11 months). The most common physical symptoms mentioned by the relatives interviewed were, in sequential order: pain (n = 13) and fatigue (n = 13), anorexia (n = 9), dyspnoea (n = 7) and cachexia (n = 7). Of the 20 decedents, 18 regularly received painkillers at least at some period during their final months. Apart from medicines prescribed by the doctors, 9 patients were treated with “anticancer” herbs, or homeopathy, or by bioenergotherapy. From the relatives’ perspectives, the main approach was focused on the physical aspects of care while there was a lack of psychological and social support, the latter often causing severe financial burden. Most relatives believed that chaplains are the main source of spiritual comfort and there was easy access to such a service both in their parish and in the hospice or hospitals. Conclusion. Our study showed that the families remembered feelings of loneliness and helplessness when confronted with the psychological suffering of their loved ones and the financial burdens caused by the caregivers. Professionals involved in palliative care should acknowledge that holistic care requires sensitivity, not only to the physical but also to the psychosocial and spiritual aspects of end-of-life care