Voices lost: where is the person in evaluating a palliative approach to care?

Abstract

Person-centredness is a cornerstone to a palliative approach to care. However, there is a risk that a person-centred perspective is lost in how a palliative approach is evaluated. We explored the extent to which evaluations of a palliative approach are consistent with its person-centred ethical stance. Using a narrative review approach, we critically reflected on how the experiences, priorities and concerns of patients and family are represented, or not represented, in evaluations of a palliative approach. We were guided by the following questions: (1) What types of outcomes and indicators are commonly used to evaluate a palliative approach? (2) Whose perspectives are represented in current evaluations of a palliative approach? And (3) What are the foci of evaluation in this body of research? We observed that the evaluations of a palliative approach are commonly based on indicators of its implementation and predominantly reflect the perspectives of healthcare providers and healthcare systems, rather than patients or family. Although evaluations focused on healthcare providers and systems are important for integrating a palliative approach, there is concern that the essence of person-centredness is lost when the perspectives of patients and families about their healthcare needs, outcomes and experiences are not consistently measured as the ultimate goal of care. There is a need for more emphasis on evaluation practices that value person-centred outcomes, in addition to outcomes oriented to the needs of healthcare providers and systems.

Keywords: narrative review; outcomes evaluation; palliative approach; person-centredness.

Figure 1.

Relative frequencies of articles that refer to preparation, implementation or outcome measures. Box sizes are proportional to the number of articles within each level of the hierarchy chart. *Job satisfaction (n = 1).

Figure 2.

Data sources by outcomes or indicators.

Figure 3.

Relationship between what is being evaluated and outcome measures used (# articles).Colors match the 3 categories of different indicators and outcomes as per Figure 1.