Eliciting Patients’ and Caregivers’ Preferences for Services and Supports Near the End of Life – The IARE Plus Study (International Access, Rights and Empowerment Programme)
The aim of palliative care is to enable every person with an illness from which he/she will not be cured, to live as well as possible right up until he/she dies. If it is generally accepted that all people should have access to high quality end-of-life care, then it is important to ensure that resources are focused towards providing those elements of care patients and caregivers derive the greatest benefit from.
This mixed methods study set out to 1) explore patients’ and informal caregivers’ preferences for services and supports when living with a life-limiting illness using a Discrete Choice Experiment (DCE) and 2) examine how these expressed preferences are influenced by participants’ characteristics and their experiences with, or perceptions of, specialist palliative care services. 69 caregivers and 75 people accessing specialist palliative care (n=144) from across three regions in Ireland participated in this study. The research project was completed in two phases. The first phase was a secondary qualitative analysis of semi-structured interviews with people accessing specialist palliative care services undertaken to determine the attributes of services and supports they valued. The findings informed the DCE instrument, which was subsequently piloted during face-to-face interviews. The second phase was a quantitative study. A cross-sectional study with patients and caregivers was undertaken. Face-to-face, structured interviews were conducted to collect quantitative data.
This research has provided deeper insight into perceptions of and experiences with specialist palliative care services and palliative care in Ireland, an area where limited factual evidence exists. While all participants broadly understood the principles of palliative care, there were key areas related to service provision where misperceptions persisted despite having personal experience. These included the belief that palliative care is only for people near the end of life, that it is only delivered by specialist teams and is usually only available to people with cancer. A significant proportion of participants also held similar incorrect assumptions about the provision of SPC services, predominately that they were only accessible to people with cancer or those near the end of life. Also, this study found there were significant differences in preferences around decision making, receiving informal care and place of care that appear to have been driven to a large extent by age. These are important findings because poor patient knowledge may hinder development of informed preferences about acceptable trajectories of care. Overall, this study shows that people living with a life-limiting illness place significant value on barrier-free access to information and advice. It was particularly important to patients and caregivers to know whom to contact if they had a query. Interestingly, the healthcare professional didn’t always need to have the answers to their query. Simply having barrier-free access to healthcare professionals alleviated patients’ and caregivers’ concerns of ‘feeling lost in the system’. The results indicate that patients prioritised ease and efficiency of access to services and support over other attributes presented in the DCE, including improvements in physical health.
This research focused on the preferences of patients accessing specialist palliative care and their caregivers. The findings are similar to previous research demonstrating that incorrect knowledge about specialist palliative care services may be a significant barrier to utilisation and that appropriate knowledge is strongly correlated with intention to utilise services. While previous research in Ireland has focused on sources of information about palliative care as a means for identifying strategies to improve public knowledge this study has identified key areas where misperceptions persist, how these vary across regions of the country and how they influence stated preferences for services and supports. Further studies should be undertaken to explore how these findings compare with the preferences of people living with palliative care needs but not accessing specialist palliative care services.
Study carried out: March 2014 – March 2017
Prof Charles Normand, Edward Kennedy Professor of Health Policy and Management, Centre for Health Policy and Management, Trinity College Dublin (TCD); Prof Karen Ryan, Clinical Associate Professor, UCD; Palliative Medicine Consultant, Mater Misericordiae Hospital & St Francis Hospice; & Clinical Lead for Palliative Care, HSE.
Dr Bridget Johnston, Research Fellow, Centre for Health Policy and Management, TCD (PhD Scholar).
This research was funded by the Health Research Board (HRB) and All Ireland Institute of Hospice and Palliative Care (AIIHPC) through its Palliative Care Research Network (PCRN).