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Views and experiences of palliative care clinicians in addressing genetics with individuals and families: a qualitative study

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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.

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Data availability

S.W is the primary data custodian. All data related to this study are held securely on S.Ws password-protected OneDrive account associated with the University of Technology Sydney (UTS). At the conclusion of the study, all data were archived in the UTS eResearch Store. Data will remain here for a period of 5 years. After this time, the data will be destroyed with the assistance of a UTS data management librarian in line with the UTS ‘Guidelines for the Management of Research Data’ document.

Code availability

Not applicable to this study.

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Acknowledgements

Thank you to all of the individual clinicians who took the time to share their views and experiences of genetics in palliative care for the benefit of this research.

Funding

This project is funded by a Translational Cancer Research Network PhD Scholarship Top-up Award, supported by the Cancer Institute NSW. S.W is the recipient of a PhD stipend scholarship from the Translational Cancer Research Network (http://www.tcrn.unsw.edu.au/).

Author information

Authors and Affiliations

  1. Graduate School of Health, University of Technology Sydney, 100 Broadway, Chippendale Sydney, NSW, 2008, Australia

    Stephanie White, Erin Turbitt & Chris Jacobs

  2. Faculty of Health, University of Technology Sydney, Sydney, Australia

    Jane Phillips

  3. School of Nursing, Faculty of Health, Queensland University of Technology, Brisbane, QLD, Australia

    Jane Phillips

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  1. Stephanie White
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  4. Chris Jacobs
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Contributions

S.W, C.J and J.P contributed to the study conception and design. Material preparation and data collection were performed by S.W, C.J and J.P. Data analysis was performed by all authors. The first draft of the manuscript was written by S.W, and all authors commented on previous versions of the manuscript. All authors read and approved the final manuscript.

Corresponding author

Correspondence to Stephanie White.

Ethics declarations

Ethics approval and consent to participate

This study was performed in line with the principles of the Declaration of Helsinki. Approval was granted by the University of Technology Sydney Research Ethics Office (ETH20-5046). Verbal informed consent was obtained prior to the interview.

Consent for publication

Verbal consent included consent to publish the findings with the assurance that participant’s identifying details would be removed.

Competing interests

The authors declare no competing interests.

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White, S., Phillips, J., Turbitt, E. et al. Views and experiences of palliative care clinicians in addressing genetics with individuals and families: a qualitative study. Support Care Cancer 30, 1615–1624 (2022). https://doi.org/10.1007/s00520-021-06569-z

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  • DOI: https://doi.org/10.1007/s00520-021-06569-z

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