Claudia Virdun, Deputy Associate Dean, (Teaching and Learning), Lecturer, PhD candidate, Faculty of Health, University of Technology, Sydney, Australia, explains the background to her longer research article selected as ‘Editor’s choice’ in the October issue of Palliative Medicine.
Throughout my 15 years as a predominately inpatient specialist palliative care nurse I witnessed wide variability in end-of-life care, from excellent through to poor. I have chosen to focus my PhD studies on reducing this variability by considering large- scale improvement strategies to enable systematic and sustainable improvements in end-of-life care within the hospital setting. This programme of research focuses on identifying the elements of end-of-life care that are most important to hospitalised patients with palliative care needs and their families.
Central to this work has been identifying and understanding what patients with palliative care needs and their families consider is important for optimal care. The first step has been to examine the evidence from studies reporting quantitative data (Virdun, Luckett, Davidson, & Phillips, 2015). 1 There are no real surprises about the areas of highest importance with these centring around: good communication and shared decision-making, good physical care, optimal symptom assessment and management, integrated care, respectful and compassionate care and trust and confidence in staff (Virdun et al., 2015). What is surprising, is that patients and families have consistently reported very similar messages about what they considered to be important for the past 25 years (Kristjanson, 1989) and we have largely failed to address their concerns. A recent integrative review focusing on patient experience (Robinson, Gott, & Ingleton, 2014) has also voiced similar concerns that our acute hospitals are failing to deliver the care identified as most important for those with palliative care needs. It is wrong to continue asking patients and families what they need, and not to act. While we understand what is needed, it is evident we struggle to know how to enable this in an environment dominated by acute and episodic care. Re-orientating our healthcare systems to ensure the care provided for people with palliative care needs and their families aligns with that which is important, is a necessary next step. Indeed, when I look at the core areas of importance noted, these are tenets of excellent care for all, irrespective of diagnosis, and so a system change to drive such outcomes need not focus purely on those patients identified as being close to the end of their life.
I propose the design, testing and subsequent implementation of measures tied to national accreditation that centre on the areas of importance for patients with palliative care needs and their families. I feel this will enable a heightened awareness of such needs that will filter to the real delivery of care – hoping to ensure every individual has access to care that resonates with that which is important for them. This systematic review is the first step in informing such measure development.
1. Virdun, C, Luckett, T, Davidson, PM and Phillips J. (2015). Dying in the hospital setting: A systematic review of quantitative studies identifying the elements of end-of-life care that patients and their families rank as being most important. Palliative Medicine, Vol 29 (9) p.774 – 796. Published online before print April 28, 2015, doi: 10.1177/0269216315583032.
Download a free copy of the full article
This post relates to a longer article, ‘Dying in the hospital setting: A systematic review of quantitative studies identifying the elements of end-of-life care that patients and their families rank as being most important’, by Claudia Virdun et al., published in Palliat Med October 2015 vol. 29 (9) 774–796.
EAPC members and registered users of the EAPC website can download a free copy of this article and other ‘Editor’s choice’ papers from the EAPC website. (If you need to register or login to download this paper please follow the instructions in the top right-hand corner of EAPC home page and scroll down to the article). Click here to view other EAPC-originated papers.
If you’ve enjoyed this post you may be interested to read about the Irish Hospice Foundation’s ‘Hospice Friendly Hospitals’ programme, which aims to improve the end of life care experience for patients and families in the acute sector.