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Does implementation matter if comprehension is lacking? A qualitative investigation into perceptions of advance care planning in people with cancer

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Abstract

Purpose

While advance care planning holds promise, uptake is variable and it is unclear how well people engage with or comprehend advance care planning. The objective of this study was to explore how people with cancer comprehended advance care plans and examine how accurately advance care planning documentation represented patient wishes.

Methods

This study used a qualitative descriptive design. Data collection comprised interviews and an examination of participants’ existing advance care planning documentation. Participants included those who had any diagnosis of cancer with an advance care plan recorded: Refusal of Treatment Certificate, Statement of Choices, and/or Enduring Power of Attorney (Medical Treatment) at one cancer treatment centre.

Results

Fourteen participants were involved in the study. Twelve participants were female (86%). The mean age was 77 (range: 61–91), and participants had completed their advance care planning documentation between 8 and 72 weeks prior to the interview (mean 33 weeks). Three themes were evident from the data: incomplete advance care planning understanding and confidence, limited congruence for attitude and documentation, advance care planning can enable peace of mind. Complete advance care planning understanding was unusual; most participants demonstrated partial comprehension of their own advance care plan, and some indicated very limited understanding. Participants’ attitudes and their written document congruence were limited, but advance care planning was seen as helpful.

Conclusions

This study highlighted advance care planning was not a completely accurate representation of patient wishes. There is opportunity to improve how patients comprehend their own advance care planning documentation.

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Acknowledgements

The authors wish to thank the participants who took part in this study and the clinicians who supported this research.

Funding

This project was funded by a Deakin University Faculty Research Development Grant. Anna Ugalde is supported by an Alfred Deakin Postdoctoral Research Fellowship.

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Correspondence to Anna Ugalde.

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Conflict of interest

The authors declare they have no conflicts of interest.

Ethical approval

This study was approved by local human research ethics committees at Deakin University (approval number 2015-288; 16 November 2015), Eastern Health (E20-2015; 30 October 2015) and Cancer Council Victoria (IER1508; 29 September 2015).

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Ugalde, A., O’Callaghan, C., Byard, C. et al. Does implementation matter if comprehension is lacking? A qualitative investigation into perceptions of advance care planning in people with cancer. Support Care Cancer 26, 3765–3771 (2018). https://doi.org/10.1007/s00520-018-4241-y

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  • DOI: https://doi.org/10.1007/s00520-018-4241-y

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