This is the first time that national hospice/palliative care performance data in symptom control have been presented, and the first data that demonstrate that patient-centred improvements in care can be delivered nationally. This program of work demonstrates that it is feasible to measure patient-centred palliative care outcomes routinely at point-of-care as an integral part of the clinical encounter. More importantly, the data confirm that it is possible to work with services to improve systematically the care that is provided in ways that can be measured using patient- and family-centred outcomes. Work is ongoing to better understand why pain is the only symptom not to significantly improve.
Other initiatives have started around the world that are seeking to routinely improve patient outcomes through routine data capture, analysis and feedback using similar processes [16–18]. There is a need to harmonise measures and ensure that data are also being benchmarked at patient level across these initiatives to understand variations in outcomes between services internationally.
Building routine data collection into clinical care is the critical foundation in order to understand patient outcomes. This allows comparison between patients, not simply between services. Demonstrating the rates of improved symptom control is crucial if, as a community, we are to have confidence in the care that is offered to people at the end of life and to further invest in it.
Given that hospice/palliative care was a sector of health care that was largely data naïve a decade ago, a national voluntary program of this size and complexity demonstrates very rapid progress. For many services for the first time, the Collaboration has embedded standardised and routine clinical assessments. More importantly, PCOC has catalysed a process of services starting to compare and contrast models of service delivery and levels of resourcing in ways that have not happened before.
Strengths of this program
Bespoke measures important to patients and their families cannot be derived from clinical records and need to be collected prospectively. These data fulfil this crucial criterion. The diversity of settings makes such collection even more crucial, and this study represents the various clinical settings in which hospice/palliative clinical care is delivered.
By using phase and a measure of function, PCOC has also embedded a new common language for rapidly describing the position on the care trajectory of individual patients .
The use of these two simple measures (phase and function) to describe each patient also allows for data standardisation across the palliative care population in a way that has not been possible before. This includes an ability for referring health professionals and specialist service providers to use descriptors with agreed definitions to describe a person’s physical status accurately and quickly.
By controlling for patients’ overall physical status (which is the major predictor of resource utilisation at the end of life) in the comparisons made, residual variations are largely going to be due to variations between services: models of care, clinical competencies, resourcing or combinations of these factors. This has allowed a process of embedding quality systematically across a whole sector of the health system relatively quickly. Developing a culture of rapid evaluation and re-evaluation after adjusting local models of clinical care delivery is an exciting development within hospice/palliative care.
Data collected in this prospective way are of high quality because their collection is built into routine clinical practice. Tools used clinically on a day-to-day basis to measure and plan patient care can be captured and, from a service’s perspective, be used to follow performance over time with a small number of key measures that are important to patients and their families. The simplicity of the measures is a major strength especially with the ability to complement this work with direct patient and family/caregiver surveys.
This analysis is limited to those services that participated for the entire 42-month period, and although they may not be entirely representative of all services, they represent a range of service models in a range of settings and provide care to a large number of patients. Importantly, the finding that patient-centred outcomes can be improved is in no way diminished by the number of services.
These data can only reflect people who are referred to specialist palliative care services, and this currently represents about 60 % of people who will die from cancer with much lower rates for other life-limiting illnesses . Extending this data collection into primary care to cover the balance of patients is going to be far more challenging. Further development of the data system will enhance the ability to follow individual patients across a range of settings of care.
Staff competency in clinical ratings is an area of ongoing training and calibration. There is also an unquantifiable level of proxies making clinical ratings on behalf of patients, but this has systematically diminished over the course of the data reported here and would likely therefore serve to underestimate the magnitude of improvement reported. Quantifying the discrepancy between patient and proxy ratings has been an important part of this process .
Implications for research
These data are a demonstration of what can be measured nationally on a routine basis. However, these data are not sufficient to explain why similarly resourced services have different patient outcomes. Differences in clinical outcomes between services as a result of differing staffing levels can also be deduced from the PCOC processes. This is a work that needs to be done urgently. Equally, research on why pain is the only symptom not to significantly improve is also urgent.
There is the challenge of whether service level improvements are translating into improvements at an individual patient level at a level that is clinically meaningful. As numbers increase in the dataset, subgroup analyses will also be able to be undertaken by site of care and by diagnostic subgroups.
Implications for clinical practice and quality improvement
The quality of hospice/palliative care can be improved, but this requires performance to be measured routinely by the people for whom it most counts—patients. Without such measurement, it is tempting to rely on the praise and gratitude of families who have experienced the services offered. Given these data, it is difficult to justify any service that does not actively include measurement of the service’s performance and uses these data to drive quality improvement processes.
Implications for health policy
The community-wide benefits of hospice/palliative care services include benefits for patients and their families/caregivers . Ensuring that the services offered systematically improve is likely to amplify the benefits that have already been observed. Given the increasing levels of investment in hospice/palliative care services by health services, it is crucial to expand the evidence base that supports improved health outcomes for people at the end of life and for caregivers while in the role and subsequently. These data also suggest that funders can now consider linking funding levels to patient-centred quality outcomes.