Background Advance care planning helps individuals clarify preferences for future care, identifying key decision makers should they be unable to make their own decisions (Freeland & Wu, 2019. Curr Geriatr Rep. 8:12). The field of haematological malignancies is an area in which advance care planning is frequently overlooked (LeBlanc, 2017. J Oncol Pract. First published 2017 Oct 5). It is a challenging specialism, where transition from curative to end of life can be rapid (Moreno-Alonso, Porta-Sales, Monforte-Royo, et al., 2018. Palliat Med. 32:79).
Aims An exploratory study aimed at understanding the perceived barriers and facilitators to advance care planning at a large haematology centre. In understanding the perceived barriers, ways to improve advance care planning in haematological malignancies were identified.
Methods Single centre exploratory study.
Literature review. Questionnaire developed and sent electronically to clinical practitioners in varied patient-facing roles within haematological malignancies. Results compiled using analysis software. Data analysed using thematic analysis.
Results 26 responses. Seven identified themes: education, communication, disease and treatment, time, support and environment. Education featured as a theme central to the others.
35% of respondents had no training in advance care planning. Only 12% of respondents mentioned non-clinical aspects. Responses indicated a focus on clinical decisions around resuscitation. Aspects of advance care planning including social, financial and therapeutic aspects not considered.
Conclusion This study along with the existing literature recognises the challenges associated with defining the end of life phase in a patient with a haematological malignancy, given its unpredictable course (McCaughan, Roman, Smith, et al., 2018. BMJ Support Palliat Care. 8: 78). It saw an overwhelming list of barriers, with significantly fewer facilitators highlighted. Limited education around advance care planning was identified as having a detrimental effect on staff understanding thus impacting on implementation of advance care planning. Advance care planning needs to be considered in circumstances where the outcome is unclear. It should not be confined to times of crisis, but discussed in the face of ‘living with dying’, preparing for all eventualities (Abel, Kellehear, Millington Sanders, et al., 2020. Palliat Care Soc Pract. 13:1).
Statistics from Altmetric.com
If you wish to reuse any or all of this article please use the link below which will take you to the Copyright Clearance Center’s RightsLink service. You will be able to get a quick price and instant permission to reuse the content in many different ways.