Embedding Objective Measurements of Quality into Routine Practice in Hospice/Palliative Care

The article by Kamal et al.,1Kamal A.H. Bull J. Ritchie C.S. et al.Adherence to measuring what matters measures using point-of-care data collection across diverse clinical settings.J Pain Symptom Manage. 2016; 51: 497-503Abstract Full Text Full Text PDF Scopus (14) Google Scholar “Adherence to Measuring What Matters Measures Using Point-of-Care Data Collection Across Diverse Clinical Settings,” is a valuable addition to the growing body of literature that details the importance of embedding objective measurements of quality into routine practice in hospice/palliative care. This is a significant paradigm shift given that, until quite recently, hospice/palliative care services have relied on process measures to evaluate their worth rather than patient-reported measures including people's actual clinical needs, outcomes, and experiences. The importance of such programs is highlighted by the number of similar initiatives that have been reported, albeit using a variety of different tools and platforms, in different locations including the United States,2Kamal A.H. Harrison K.L. Bakitas M. et al.Improving the quality of palliative care through national and regional collaboration efforts.Cancer Control. 2015; 22: 396-402Google Scholar Canada,3Barbera L. Seow H. Sutradhar R. et al.Quality indicators of end-of-life care in patients with cancer: what rate is right?.J Oncol Pract. 2015; 11: e279-e287Crossref Scopus (40) Google Scholar the United Kingdom,4Witt J. Murtagh F.E.M. de Wolf-Linder S. et al.Introducing the Outcome Assessment and Complexity Collaborative (OACC) suite of measures: A brief introduction. King's College London, London2014Google Scholar and Australia.5Currow D.C. Eagar K. Aoun S. et al.Is it feasible and desirable to collect voluntarily quality and outcome data nationally in palliative oncology care?.J Clin Oncol. 2008; 26: 3853-3859Crossref PubMed Scopus (49) Google Scholar This letter has two aims: The first is to update the significant progress at a national level embedding routine collection of measures in palliative care in Australia. This is a result of the formation of the national Palliative Care Outcomes Collaboration (PCOC) program.6Currow D.C. Allingham S. Yates P. et al.Improving national hospice/palliative care service symptom outcomes systematically through point-of-care data collection, structured feedback and benchmarking.Support Care Cancer. 2015; 23: 307-315Crossref PubMed Scopus (73) Google Scholar The second is to invite a conversation to commence regarding international consensus on data architecture and tools where comparisons can already be drawn for international benchmarking as a foundation for future work. In 2005, as part of the Australian federal government's commitment to enhancing the delivery of hospice/palliative care, PCOC was formed as a program consortium between four academic institutions.5Currow D.C. Eagar K. Aoun S. et al.Is it feasible and desirable to collect voluntarily quality and outcome data nationally in palliative oncology care?.J Clin Oncol. 2008; 26: 3853-3859Crossref PubMed Scopus (49) Google Scholar This national program was specifically designed to improve the clinical outcomes in hospice/palliative care by facilitating a quality cycle of audit, feedback, and benchmarking that includes:1.Outcomes recorded for individual patients at each encounter (in the community) or when a significant change in care needs occurs (in the inpatient setting);2.National data are aggregated and analyzed and then fed back to all participating services allowing them to compare themselves with all the other de-identified participating services nationally every six months;3.National service-level performance data derived from patient- and family-centered outcome measures; and4.Implementation of national quality improvement initiatives with PCOC staff identifying priorities for local clinical and systems change and support of change management processes. The architecture of the PCOC data has enabled systematic, clinically relevant collection from services, many of which were almost entirely data naive with no patient-reported data being collected and where few (if any) standardized clinical tools were in place. In contrast, more than 90% of Australian hospice/palliative care units now routinely use data collected at a minimum of 1) once on admission to the service (patient demographic and clinical history), 2) every time place of care changes (patient-reported symptoms, functional status, and clinical phase), 3) every time phase changes (patient symptom data, family well-being, function, and level of dependency).6Currow D.C. Allingham S. Yates P. et al.Improving national hospice/palliative care service symptom outcomes systematically through point-of-care data collection, structured feedback and benchmarking.Support Care Cancer. 2015; 23: 307-315Crossref PubMed Scopus (73) Google Scholar, 7Eagar K. Watters P. Currow D.C. et al.The Australian Palliative Care Outcomes Collaboration (PCOC)—measuring the quality and outcomes of palliative care on a routine basis.Aust Health Rev. 2010; 34: 186-192Crossref PubMed Scopus (97) Google Scholar, 8Masso M. Allingham S. Banfield M. et al.Palliative care phase: inter-rater reliability and acceptability in a national study.Palliat Med. 2015; 29: 22-30Crossref PubMed Scopus (79) Google Scholar Unique to the PCOC program is the development and use of the validated tool, the palliative care phase.8Masso M. Allingham S. Banfield M. et al.Palliative care phase: inter-rater reliability and acceptability in a national study.Palliat Med. 2015; 29: 22-30Crossref PubMed Scopus (79) Google Scholar This single-item measure is independent of diagnosis and was created for a hospice/palliative care population. This creates four patient groups that clinically reflect the disease trajectory at the end of life (Table 1). Adjusting for the palliative care phase is a major strength in ensuring that PCOC analyses are comparing like patients with like patients throughout their palliative journey. Palliative care phase allows the experiences and needs of patients and their families to be systematically documented as a separate entity to their diagnosis. This acknowledges not only the inherent instability of hospice/palliative care patients but also how people's needs change with time.Table 1PCOC Phase Definitions at the Beginning and End of a Phase8Masso M. Allingham S. Banfield M. et al.Palliative care phase: inter-rater reliability and acceptability in a national study.Palliat Med. 2015; 29: 22-30Crossref PubMed Scopus (79) Google ScholarPhaseStart PhaseEnd PhaseStablePatient problems and symptoms are adequately controlled by established plan of care and-Further interventions to maintain symptom control and quality of life have been planned and-Family/carer situation is relatively stable and no new issues are apparent.The needs of the patient and/or family/carer increase, requiring changes to the existing plan of care.UnstableAn urgent change in the plan of care or emergency treatment is required because-Patient experiences a new problem that was not anticipated in the existing plan of care, and/or-Patient experiences a rapid increase in the severity of a current problem, and/or-Family/carers circumstances change suddenly impacting on patient care.The new plan of care is in place, it has been reviewed and no further changes to the care plan are required. This does not necessarily mean that the symptom/crisis has fully resolved but there is a clear diagnosis and plan of care (i.e., patient is stable or deteriorating)and/orDeath is likely within days (i.e., patient is now terminal).DeterioratingThe care plan is addressing anticipated needs but requires periodic review because-Patients overall functional status is declining and-Patient experiences a gradual worsening of existing problem and/or-Patient experiences a new but anticipated problem and/or-Family/carers experience gradual worsening distress that impacts on the patient care.-Patient condition plateaus (i.e., patient is now stable) or-An urgent change in the care plan or emergency treatment and/or-Family/carers experience a sudden change in their situation that impacts on patient care, and urgent intervention is required (i.e., patient is now unstable) or-Death is likely within days (i.e., patient is now terminal).TerminalDeath is likely within days.-Patient dies or-Patient condition changes and death is no longer likely within days (i.e., patient is now stable or deteriorating). Open table in a new tab Australian hospice/palliative care services voluntarily contribute their comparative data, with aggregated feedback provided to each unit every six months. The uptake of this initiative confirms the feasibility of collecting point-of-care patient- and family-centered outcomes with measurable improvements demonstrated in care across the country as a result.6Currow D.C. Allingham S. Yates P. et al.Improving national hospice/palliative care service symptom outcomes systematically through point-of-care data collection, structured feedback and benchmarking.Support Care Cancer. 2015; 23: 307-315Crossref PubMed Scopus (73) Google Scholar This was illustrated recently by an analysis of the data of 19,747 patients (46% female; 85% cancer; 27,928 episodes of care; 65,463 phases) demonstrating significant improvements across the domains of symptom control, family care, and psychological and spiritual care. In the absence of such data, it would not be possible to understand and appreciate the breadth of issues that require attention. There are other benefits to PCOC. As well as improving patient and family care, the large repository of prospectively collected, descriptive hospice/palliative care population data is enhancing the understanding of the experiences of the hospice/palliative care population. This is both in terms of equity of access to services and other work that is detailing, at population levels, both the prevalence and severity of breathlessness and other symptoms including pain.9Ekström M. Allingham S.F. Eagar K. et al.Breathlessness during the last week of life in palliative care: an Australian prospective, longitudinal study.J Pain Symptom Manage. 2016; 51: 816-823Abstract Full Text Full Text PDF Scopus (22) Google Scholar, 10Clark K. Smith J. Lovell M. Currow D.C. Longitudinal pain reports in a palliative care population.J Palliat Med. 2012; 15: 1335-1341Crossref PubMed Scopus (10) Google Scholar Another benefit is that services have access to the outcomes of other units allowing service planning and advocacy for resources. When considering the initiatives from around the world, there are commonalities that will allow benchmarking: patient-reported measures, measures of family caregiver well-being, and a global measure of function/independence/level of dependency. To this, analysis of PCOC data suggests that the addition of palliative care phase is key to understanding some of the variation in patient-reported outcomes in multivariable models. The routine addition of palliative care phase, therefore, is strongly advocated. The importance of national programs like PCOC cannot be overstated. PCOC and national initiatives like it open the door to international benchmarking. Engaging such an international collaboration makes it possible to realize worldwide agreed minimum levels of symptom control for all clinical hospice/palliative care services caring for people with life-limiting illnesses. Achieving this goal is not unrealistic given there is already commonality of elements contained in the existing quality programs currently in place around the world. The ultimate aim of such a program would be the realization of international agreements to improve hospice/palliative care patient outcomes through routine data capture, analysis, feedback, and benchmarking. Adherence to Measuring What Matters Measures Using Point-of-Care Data Collection Across Diverse Clinical SettingsJournal of Pain and Symptom ManagementVol. 51Issue 3PreviewMeasuring What Matters (MWM) for palliative care has prioritized data collection efforts for evaluating quality in clinical practice. How these measures can be implemented across diverse clinical settings using point-of-care data collection on quality is unknown. Full-Text PDF Open Access

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