The last months of living : an ethnographic study of the trajectories of illness and care for patients with advanced cancer in Greece

• Main Author: Anagnostou, Despina
• Other Authors: Higginson, Irene Julie ; Richardson, Alison ; Wiseman, Theresa
• Published: King's College London (University of London) 2013
• Subjects: 616.99
• Online Access: https://ethos.bl.uk/OrderDetails.do?uin=uk.bl.ethos.643539

Context: There is little institutionalised palliative care in Greece; hence most patients with advanced cancer die in hospitals with unrecognised palliative care needs. There is little evidence on the care these patients receive. Patients’ perspectives and experiences of the illness and care, and their preferences on issues around death and dying have not been examined within the Greek context. Aim: To explore in-depth the care received by patients with advanced cancer in Greece, and how they and their families experience the illness and care throughout the last months of life. Methods: A prospective longitudinal, qualitative approach was adopted, employing an ethnographic methodological framework. Thirteen patients with advanced cancer were followed until death, from the point they came into contact with either one of two medical wards or a day clinic in an oncology hospital in Athens. The data were collected using participant observation, semi-structured interviews and discussions. The patients, 34 family members, and 32 health professionals involved in their care were interviewed (total 75 hours) and observed (total 830 hours). Data were analysed in both Greek and English, using thematic network analysis and case study analysis. Results: Six men and seven women (patients) took part in the study, age ranging 30-75 years. Primary diagnoses included breast, lung and colon cancer. They were followed for 40 days to six months prior to death. Twelve out of the 13 died in the hospital (one died at home); their last admission ranged 10-70 days. Care focused on cure and prolonging life until the late stages of the disease, allowing little opportunity for transitioning to a palliative phase. Decision-making was doctor and/or family focused. The patient’s voice was expressed through families. When patients chose to be actively involved, they did so through: a) planning care near the end of life, b) maintaining their role within the family, and c) assuring the space and time for their dying preparation. Dying trajectories were dependent on illness progression and doctors’ attitudes; decision-making of care; symptom control; preferences for care and priorities of life, which shifted over time for patients and families; and patients and families values and attitudes towards death and dying. Patients’ wishes for symptom relief increased as the illness progressed, whilst their focus shifted from the illness to the relationship with their loved ones, often resulting in changing preferences in support of their families’ wishes. Near death, patients actively negotiated space and time for preparing to die, and performed dying rituals. Families proved to have a central role in care provision. Members with a dominant role within the family most often adopted a decision-making role, whilst others retained the care-giving one. As the illness progressed, the focus of family’s decision-making changed from cure to care and the symptom burden increased. Also, in cases where the decision maker within the family changed during the illness trajectory, the decision-making shifted to the preferences of the new decision maker. All patients expressed a preference to die at home. Most families changed their preference from home to hospital death due to lack of health care support at home. Conclusions: The study showed the all importance of the interplay between decision making, illness progression, awareness of dying, family dynamics and their change over time in shaping patient trajectory at the last months of life. A framework of mindset orientation of goals and priorities is proposed whicch may provide a new prospect for approaching trajectories in palliative care. In Greece, the journey of advanced cancer patients over their last months of life is shaped by a combination of factors including doctors’ attitude towards cure rather than care; the lack of symptom control; the lack of availability of home care services; families’ resources to advocate for the patient and the role of the patient within the family. Preferences and choices over care changed over time for some patients and their families due to these factors. For palliative care to develop within Greece, the reasons behind these attitudes need to be further studied and challenged, and suitable training developed. Also, proper multi-professional teamwork, an integral component of palliative care, needs to be developed.