Bereaved hospice caregivers' perceptions of the end-of-life care communication process and the involvement of health care professionals

Background: This study was conducted to gain an understanding of bereaved hospice family caregivers' perceptions of the communication process from initial discussion of the need for end-of-life care and hospice through the decision to choose hospice and the transition home. Methods: One hundred eight bereaved hospice caregivers that were 36 months postpatient death responded to a quantitative mailed survey. Aspects of the end-of-life care communication process, including involvement of health care professionals at each step, were assessed. Results: Serious illness and the need for hospice care were first mentioned to patients and caregivers by physicians. Often the caregivers recalled only one meeting in which hospice was discussed. Other than the physicians, social workers were the professionals most often present in at least one of these meetings. Nurses and social workers were both perceived to be helpful in the transition to home hospice. Social workers were reported to be most comfortable with discussion of end-of-life care, most knowledgeable, and most available during the communication process that led to a decision about end-of-life care. Suggestions that these caregivers had to improve communication with health care professionals were categorized from responses to an open-ended survey question as: the need to discuss vital information earlier and what to expect for care at end stage; be more forthcoming about reality of death; and treat people as individuals. Conclusions: Although many health care professionals play a role in the communication and transition to hospice care, physicians and social workers were found to be pivotal participants in this process. A coordinated team approach to end-of-life communication and decision-making may facilitate the process and possibly lead to increased and earlier referral to hospice.