In order to measure and assess any phenomena or construct of interest, a critical (yet regrettably often overlooked) step is establishing clarity around exactly what one intends to(and does not intend to) measure. With regards to the construct of compassion, while surely one can flip through the pages of a dictionary to retrieve a definition,this overly simple (not to mention restrictive) approach further propagates a cardinal shortcoming of the compassion literature: the lack of perspectives from the true and ultimate beneficiaries of compassion, patients themselves. Patient perspectives form the foundation of the Patient Compassion Model (PCM) we developed [1] – an empirical model that highlights the essential components of compassion, which became the basis for the Sinclair Compassion Questionnaire (SCQ) [2].
An empirical definition of compassion is important in service of both research communication and the creation of a robust measure. For our purposes it was not sufficient to explain compassion as just “something you know when you feel it” without trying to capture its various dimensions explicitly and precisely in words. Hazy and inconsistent definitions, void of patients’ perspectives, represented just a few of the shortcomings we identified in a critical review of existing measures of compassion [3]. For one measure,compassion was conceptualized as an emotion in physicians, whereas for others,it was simply categorized as a trait or even used as a measure of organizational support for compassionate care instead of compassion itself [3]. Another two measurement instruments shelved the issue of a definition altogether by simply using“compassion” as an item for the patients to presumably interpret at will [3].
To add to the seemingly never-ending pile of compassion confusion, a number of related constructs such as sympathy and empathy were often conflated with compassion [4]. It became crucial to distinguish between these three constructs and identify what specifically made compassion so special. As such, we took on the pivotal challenge to define compassion by directly asking patients (specifically those living with advanced cancer) to describe their experiences of receiving compassion from their healthcare providers (HCPs). Gleaning the numerous insights of patient through hundreds of interviews and varying healthcare experiences, it became apparent that compassionate healthcare providers were those who not only seek to understand a patient and their unique needs, but also strive to actively respond to these needs in a timely manner in order to alleviate patient suffering [1]. Through this investigation, we formulated the following patient-oriented definition of compassion:
com·pas·sion:a virtuous response that seeks to address the suffering and needs of a person through relational understanding and action [1]
While some may use the highly personalized nature of compassion as an excuse for why we should not or cannot measure such a complex and subjective construct, we sought to incorporate this dynamism into our definition and the measure we developed. We eased this tension by recognizing that compassion was found to be best delivered through an ebb and flow, depending on patients’ individualized and unique needs that vary depending on their situation or clinical circumstance. As such, the fluid and dynamic nature of compassion became integral to its definition and the PCM itself.
The research didn’t stop there. Through qualitative interviews it was important to ensure that the model could be generalized to other life-limiting conditions such as dementia and coronary heart disease among numerous others, as opposed to solely cancer itself. All of this was done to ensure the model’s applicability – and by extension – the tenability of our measure. On the opposite side of the bedrail, we sought perspectives from the recipients of compassion – healthcare providers – to ensure that the entire relational scope of compassion was accounted for and no components were overlooked. This step generated a parallel model, the HCP Compassion Model [5], which alongside the PCM serve to answer the question of “what” essential ingredients need to be included in the SCQ.
While the complex nature of compassion initially presented a challenge to the development of a measure, in hindsight going directly to patients and healthcare providers – those residing in the epicentre of compassion – made it quite simple. Patients and healthcare providers told us what was involved in compassion, how it flowed and how it was challenged, and how it was different from sympathy or empathy.
While this conceptual research was insightful, without a valid or reliable measure to assess and monitor compassion over time, improving compassion in healthcare systems or delivering high-caliber compassion was left to happenstance, good intentions, and anecdotal evidence that was neither measurable or sustainable. In looking at other compassion measures [3], many were self-reported with HCPs assessing how compassionate they were in the patient interaction. In some ways, this is akin to dining at a restaurant but instead of the customer providing a review, it is left to the server and chef to fill out the customer experience review on behalf of their diners. The necessity of developing a robust, patient-reported measure of compassion backed by scientific rigor and psychometric evidence was clear as was the need to anchor patients’ perspectives in every phase of the measure development process thereafter—which is another distinguishing feature of the SCQ in comparison to other compassion measures [3].
There is no way that the world’s most valid and reliable patient-reported measure of compassion could exist or lay claim to this title without these initial and imperative initial phases of research, to establish the fundamental understanding of what we aimed to measure.
Check out the SCQ Video Tutorials to learn about the development, validation, and using the different versions of the SCQ in research, clinical practice and system analysis. https://www.compassionmeasure.com/gettingstarted
Photo by MarcusGanahl on Unsplash
[1] Sinclair, S., McClement, S., Raffin-Bouchal, S., Hack, T.F., Hagen, N. A., McConnell, S., & Chochinov, H. M. (2016). Compassion in Health Care: An Empirical Model. Journal of pain and symptom management, 51(2),193–203. https://doi.org/10.1016/j.jpainsymman.2015.10.009
[2] Sinclair, S., Hack, T. F., MacInnis, C. C., Jaggi, P., Boss, H., McClement, S., Sinnarajah, A., & Thompson, G. (2021). Development and validation of a patient-reported measure of compassion in healthcare: The Sinclair Compassion Questionnaire (SCQ). BMJ Open, 11(6), e045988. https://doi.org/10.1136/bmjopen-2020-045988
[3] Sinclair,S., Russell, L. B., Hack, T. F., Kondejewski, J., & Sawatzky, R. (2017). Measuring Compassion in Healthcare: A Comprehensive and Critical Review. The Patient, 10(4), 389–405. https://doi.org/10.1007/s40271-016-0209-5
[4] Sinclair, S., Beamer, K., Hack, T. F., McClement, S., Raffin Bouchal, S., Chochinov, H. M., & Hagen, N. A. (2017). Sympathy, empathy, and compassion: A grounded theory study of palliative care patients’ understandings, experiences, and preferences. Palliative Medicine, 31(5), 437–447. https://doi.org/10.1177/0269216316663499
[5] Sinclair, S., Hack, T. F., Raffin-Bouchal, S., McClement, S., Stajduhar, K., Singh, P., Hagen, N. A., Sinnarajah, A., & Chochinov, H. M. (2018). What are healthcare providers’ understandings and experiences of compassion? The healthcare compassion model: a grounded theory study of healthcare providers in Canada. BMJ Open, 8(3). https://doi.org/10.1136/bmjopen-2017-019701