Stephanie White1, Jane Phillips2,3, Erin Turbitt4, Chris Jacobs4. 1. Graduate School of Health, University of Technology Sydney, 100 Broadway, Chippendale Sydney, NSW, 2008, Australia. stephanie.white@uts.edu.au. 2. Faculty of Health, University of Technology Sydney, Sydney, Australia. 3. School of Nursing, Faculty of Health, Queensland University of Technology, Brisbane, QLD, Australia. 4. Graduate School of Health, University of Technology Sydney, 100 Broadway, Chippendale Sydney, NSW, 2008, Australia.
Abstract
PURPOSE: A proportion of people with palliative care needs unknowingly have a genetic predisposition to their disease, placing relatives at increased risk. As end-of-life nears, the opportunity to address genetics for the benefit of their family narrows. Clinicians face numerous barriers addressing genetic issues, but there is limited evidence from the palliative care clinician perspective. Our aims are to (1) explore the views and experiences of palliative care clinicians in addressing genetics with patients and their families and (2) generate suggested strategies that support integration of genetics into palliative care. METHODS: An interpretive descriptive qualitative study using semi-structured interviews with palliative care doctors and nurses (N = 14). RESULTS: Three themes were identified: (1) Harms and benefits of raising genetics: a delicate balancing act, (2) Navigating genetic responsibility within the scope of palliative care and (3) Overcoming practice barriers: a multipronged approach. Participants described balancing the benefits of addressing genetics in palliative care against potential harms. Responsibility to address genetic issues depends on perceptions of relevance and the scope of palliative care. Suggestions to overcome practice barriers included building genetic-palliative care relationships and multi-layered genetics education, developing clinical resources and increasing organisational support. CONCLUSIONS: Integrating aspects of genetics is feasible, but must be balanced against potential harms and benefits. Palliative care clinicians were uncertain about their responsibility to navigate these complex issues to address genetics. There are opportunities to overcome barriers and tailor support to ensure people nearing end-of-life have a chance to address genetic issues for the benefit of their families.
PURPOSE: A proportion of people with palliative care needs unknowingly have a genetic predisposition to their disease, placing relatives at increased risk. As end-of-life nears, the opportunity to address genetics for the benefit of their family narrows. Clinicians face numerous barriers addressing genetic issues, but there is limited evidence from the palliative care clinician perspective. Our aims are to (1) explore the views and experiences of palliative care clinicians in addressing genetics with patients and their families and (2) generate suggested strategies that support integration of genetics into palliative care. METHODS: An interpretive descriptive qualitative study using semi-structured interviews with palliative care doctors and nurses (N = 14). RESULTS: Three themes were identified: (1) Harms and benefits of raising genetics: a delicate balancing act, (2) Navigating genetic responsibility within the scope of palliative care and (3) Overcoming practice barriers: a multipronged approach. Participants described balancing the benefits of addressing genetics in palliative care against potential harms. Responsibility to address genetic issues depends on perceptions of relevance and the scope of palliative care. Suggestions to overcome practice barriers included building genetic-palliative care relationships and multi-layered genetics education, developing clinical resources and increasing organisational support. CONCLUSIONS: Integrating aspects of genetics is feasible, but must be balanced against potential harms and benefits. Palliative care clinicians were uncertain about their responsibility to navigate these complex issues to address genetics. There are opportunities to overcome barriers and tailor support to ensure people nearing end-of-life have a chance to address genetic issues for the benefit of their families.
Authors: Kathryn J Schlich-Bakker; Herman F J ten Kroode; Carla C Wárlám-Rodenhuis; Jan van den Bout; Margreet G E M Ausems Journal: Genet Med Date: 2007-11 Impact factor: 8.822