Patient-centered outcomes research in palliative care – by Thomas J Lynch

Dr Thomas J Lynch of Johns Hopkins University asks whether at the ‘end’ there is any ‘point’?

I left the North-West of England for the Eastern Seaboard of the United States of America almost 18 months ago to take a position at Johns Hopkins University in Baltimore. Since my arrival in the USA, I have been working on a number of highly interesting patient-centered outcomes research (PCOR) projects that have focused on various forms of chronic illness (pancreatic cancer, Type II diabetes and Chronic Obstructive Pulmonary Disease).

However, as a PhD student, I remember being told by David Clark (who was my supervisor at the time) that once I started working in palliative care research I would be “bitten by the bug” and would want to work in that field whenever (and wherever) possible. To some extent this has proven to be true as palliative care has never been far from my mind during my time in the USA and it was whilst working on these projects that I became interested in the concept of patient-centered outcomes (or ‘endpoints’ as they are commonly referred to here in the USA) in palliative care.

A paradigm of inevitability

There have been a number of innovative projects focusing on patient outcomes/endpoints in palliative/end of life care (and it should be acknowledged that palliative care is also subsumed within a wide variety of other disciplinary projects relating to PCOR). Yet there still remains a dearth of PCOR in palliative care in the USA. Why is this? Perhaps it is because palliative care patients are often too ill to participate in PCOR due to their disease (or a complex combination of multiple symptoms) or have impaired cognitive function (they may be unable to communicate or cannot understand what is required of them). In the wider context (as David and others have highlighted in this blog), research interest in the palliative care field may only exist within a limited paradigm circumscribed by the broader culture of medicine – a biomedical worldview of palliative care as a form of “failure” due to a “death denying” culture and the tendency of mainstream health services to focus on “curing” disease and prolonging life at all costs. When viewed within this context, do patient-centered outcomes in palliative care even matter? The “outcome” for this particular group of people is “inevitable” so why waste valuable time and resources on the dying that could be “better” spent on those with lives left to live?

Meaningful engagement with human mortality

An overarching principle of PCOR is to “meaningfully engage” patients and their family members/caregivers but how can “meaningful engagement” with prolonged suffering and eventual death be sensitively promoted? How can we effectively enable people to let us know what is most important to them at the end of their lives? Terminally ill patients should have as much choice and control as possible over their care and there is an obvious need to espouse PCOR as it can provide people with a “voice” to describe their experiences across the continuum of care (thereby enabling healthcare professionals to address their unmet needs). However, as a number of studies have highlighted (1), the routine use of PCOR in palliative care has been inconsistent and difficult to implement, with a lack of coordination and standardization of outcome measures hindering comparison of patient groups across studies.

More solid high-quality evidence is needed regarding how PCOR may result in an improvement in the quality of care of patients with advanced disease. To achieve this there is a need to select reliable and valid outcome measures and determine which ones are appropriate for meeting the complex needs of palliative care populations based on scientifically rigorous criteria. The creation of an international exchange and collaboration network between organisations such as the Patient Centered Outcomes Research Institute (at the forefront of this area of research in the USA), the European Association for Palliative Care, and relevant European projects (for example, the EU project PRISMA) may possess the potential to further develop the concept of PCOR in palliative care and improve the quality of care for people with advanced and terminal illness.

It appears to me that patient-centeredness is indeed the key to outcome measurement in palliative care – more than at any other time in a person’s life it is the “end” where there truly is a “point” to patient-centered research.

 Thomas J Lynch

Senior Research Program Coordinator, Department of General Internal Medicine, The Johns Hopkins School of Medicine, Baltimore, MD​

Email: tlynch13@jhmi.edu

(1) Etkind SN, Daveson BA, Kwok W, Witt J, Bausewein C, Higginson IJ, and Murtagh FEM. Capture, Transfer, and Feedback of Patient-Centered Outcomes Data in Palliative Care Populations: Does It Make a Difference? A Systematic Review. Journal of Pain and Symptom Management, vol. 49, no. 3, March 2015.