Hospice nurses and genetics: implications for end-of-life care

The overall aim of this study is to determine hospice nurses' perception of the importance of genetics to hospice care provision and their personal level of confidence in carrying out genetics-related activities within an end-of-life care context.

Hospices nurses regularly care for patients and their families affected by inherited genetic conditions (e.g. some cancers). Therefore, nurses need knowledge and awareness of the implications of genetic conditions and confidence in their abilities to provide appropriate care and support for patients and families.

Survey.

Questionnaires were sent to a stratified sample of hospice nurses (n = 1149) in England and Wales. Using Likert scales, nurses were asked to rate the importance of and their confidence in undertaking a range of scenario-based activities that accompany caring for a patient and family affected by a genetic condition in the hospice setting. Open questions invited comments on their experiences of nursing patient/family in similar situations. Follow-up telephone interviews were carried out with hospice nurse educators to explore emerging issues.

Response rate was 29% (n = 328). Hospice nurses felt that all aspects of genetics-related care were 'very important' to hospice care, but lacked confidence in their ability to carry out the activities. Many respondents had not considered the relevance of genetics to hospice-care prior to completing the questionnaire but now considered it essential to end-of-life care even if they were not confident to provide it.

Hospice nurses' need genetics education focusing on the psychosocial implications of caring for patients and families affected by genetic conditions to enable them to provide the complex care and support in face of the difficult issues that arise in practice.

This study highlights the genetics education needs of hospice nurses in providing end-of life care for patients and their families affected by inherited genetic conditions.