RESUMEN
OBJECTIVE: To explore the experience of family caregivers of people with mesothelioma with focus on end-of-life issues. METHODS: A qualitative sub-study using semi-structured interviews and thematic analysis. RESULTS: Fourteen caregivers were interviewed; 11 were bereaved. The overarching theme was the impact of patients' diagnosis, treatment and death on caregivers and families. Three main themes were identified: (i) information provision and decision-making; (ii) grief and bereavement; and (iii) involvement and timing of palliative care. Caregivers initially had minimal knowledge of mesothelioma and wanted more information. Prognostic uncertainty caused distress. Grief and bereavement sub-themes were (i) coping and personal priorities; (ii) reflections on dying; and (iii) reflections on care. Caregivers highlighted the importance of creating meaningful events, having hope, 'doing something' and support from family and external sources. Reflections on dying contrasted regret after a 'bad', often unexpected death, with 'good' deaths. Care was made difficult by challenges navigating the health system and perceived gaps. Caregivers reported late referral to palliative care. CONCLUSION: Lack of information caused challenges for caregivers. Grief and bereavement outcomes varied and may have been adversely impacted by lack of engagement with palliative care. Integrated care with lung cancer coordinators and improved palliative care access may reduce caregiver burden.
Asunto(s)
Aflicción , Mesotelioma , Adaptación Psicológica , Cuidadores , Humanos , Mesotelioma/terapia , Cuidados Paliativos , Investigación CualitativaRESUMEN
BACKGROUND: Malignant bowel obstruction (MBO) is a common condition among palliative patients and has limited management options. There is a paucity of widely accepted national and international evidence-based guidelines to direct the management of MBO in palliative patients. OBJECTIVE: The aim of this study was to survey current practice in New Zealand of nonopioid pharmacological management of MBO and compare it with the available literature. METHODS: The study utilized a survey consisting of three scenarios: probable incomplete malignant bowel obstruction (PIMBO), incomplete malignant bowel obstruction (IMBO), and complete malignant bowel obstruction (CMBO). An online survey was conducted over 2 months targeting palliative medicine practitioners working in a hospital, hospice inpatient unit, or community setting in New Zealand. RESULTS: Forty-eight doctors responded. Of the respondents, 56.3% used guidelines to manage MBO; however, 88.9% of the guidelines used were locally generated at the doctor's institution. Metoclopramide was the drug of choice in treating PIMBO, whereas haloperidol and hyoscine butylbromide (HB) were the preferred drugs as the severity of bowel obstruction increased. Dexamethasone was accepted as standard practice for managing all severities of MBO. A variation in the preferred starting and maximum dose of all the drugs was seen. There was a decrease in the use of laxatives and enemas as the severity of MBO increased. CONCLUSION: Variation in practice for managing MBO was evident among doctors in New Zealand. There is a need for national and international evidence-based guidelines to help define best management for the differing severities of this problematic condition.