Bereaved cancer carers' experience of and preference for palliative care

Abstract

Introduction: The importance of addressing carers' needs is becoming increasingly recognised. Cancer patients' carers are identified as a vulnerable population with many unmet informational, emotional and practical needs, particularly during the palliative and end-of-life phases of care. During these phase of illness, patients and carers face the imminence of death and require additional support such as that provided by palliative care services. There is little research on carers' views regarding optimal timing of palliative care referral and the utility of palliative care services. This study aimed to explore bereaved carers' experience and understanding of palliative care and their views on optimal timing of first contact.

Methods: Thirty bereaved carers of patients with metastatic cancer who had previously participated in a randomised controlled trial of early referral versus standard access to palliative care services were interviewed via phone. The interviews were semi-structured, audio-taped and transcribed. Sampling ceased when information became redundant. Interpretive Phenomenological Analysis methodology was used for data analysis.

Results: Five major themes were identified: meaning of palliative care, timing of palliative care, valued aspects of palliative care, preparation for the patient's death and the role of palliative care in preparing for and after the patient's death. The results show that bereaved carers of cancer patients define the meaning of palliative care in terms of its function and associate it by and large with end of life. Carers were grateful for the support received from palliative care, but acknowledged its limits. Carers most appreciated the practical help and the respect that the palliative care team showed. They generally recommended that palliative care be introduced when patients need help at home or when symptoms become difficult to control rather than as soon as patients are told that the cancer is incurable.

Conclusions: This study has provided information on the meaning of palliative care to carers who have had the experience of caring for a patient who died. Carers were uncertain about the role of palliative care and associated it with end-of-life care. Education could help de-stigmatise palliative care and reduce misgivings regarding its introduction.