Coast, Joanna; Bailey, Cara; Orlando, Rosanna; Armour, Kathy; Perry, Rachel; Kinghorn, Philip (2014). 'Using a capability based outcome measure, the ICECAP-SCM, to assess benefit in a hospice setting: exploring issues around completion and adaptation' Paper presented at the annual conference of the HDCA, 2-5 September 2014, Athens, Greece.

The current evaluation framework for assessing the cost-effectiveness of end of life care, with its tendency to focus exclusively on health and the patient, is perceived by many as inadequate for informing decision making at the end of life.  An alternative approach might be to consider different care strategies in terms of the capabilities that allow individuals, and those close to them, to have a good experience of end of life.  This would entail focus on the important capabilities arising from end of life care provision.  Emphasising capability rather than functioning, enables individuals to decide for themselves how to manage the end of their life at this very sensitive and personal time.

A recently published measure, the ICECAP Supportive Care Measure (ICECAP-SCM), is a capability wellbeing instrument developed for use in evaluation of palliative and supportive care interventions.  The measure was developed using qualitative methods and focuses on the dying person's capability wellbeing associated with a good death.  Attributes (questions) within the instrument focus on an individual's ability to achieve: autonomy (being able to have a say); love (being able to be with people who care about you), freedom from physical suffering, freedom from emotional suffering, dignity (being able to maintain dignity and self respect), support (able to have help and support) and preparation (having the opportunity to make preparations). 

An important challenge in measuring capability wellbeing at end of life is who should do this measurement: individuals? those close to the individual such as relatives or close friends? health professionals?  Important issues affecting this choice may include the feasibility for patients of completing measures at a time of immense frailty and the awareness and understanding of potential proxies as well as the potential for patients to adapt to a poor quality of life and, perhaps more important, poor care.  

This research aimed to explore issues around the completion of the ICECAP-SCM by three groups:  patients at the end of life ('patients'); (b) family and friends close to the person at end of life ('close persons'); and (c) health professionals.  To provide a comparison, these groups were also asked to complete two other measures: the ICECAP-A, a generic measure of capability wellbeing, not focused on those at end of life; and the EQ-5D-5L, a generic measure of health, the standard measure for use in economic assessments within the UK decision making context. 

Patients receiving palliative care were identified and recruited through an urban hospice.  Patients included those from the community, the day hospice and the inpatient setting.  Where relevant and where the patient consented, close persons and health professionals were also identified and recruited.  All three groups were asked to complete the three questionnaires from the patient's perspective and to verbalise their thoughts whilst doing so, using the 'thinkaloud' technique.  A semi-structured exploration of the process of completion was then conducted.  All interviews were digitally audio-recorded, fully transcribed, and analysed using constant comparative methods.

In total, 70 interviews were conducted between October 2012 and February 2013 (33 patients, 21 close persons, 16 health professionals).  The attributes of the ICECAP-SCM were understood by all participants and completion was found to be feasible with all groups, including those inpatients very near the end of life.  The measure was perceived by patients as being able to accurately and appropriately record their quality of life.  Those at the very end of life felt the ICECAP-SCM was most relevant, whilst those at earlier stages preferred the ICECAP-A; few appeared to express a preference for EQ-5D-5L as the most appropriate measure.  

Importantly, differences were identified between how the patient, close person and health professional completed these measures of benefit.  These related both to issues of knowledge (for close persons and health professionals) but also to apparent differences in adaptation between the three groups.  Patients seemed to show greater adaptation as their illness trajectory changed and they coped with new challenges and found new ways to meet their own objectives.  In contrast close persons seemed less likely to adapt, more likely to perceive the patient's quality of life as negative, and tended to relate their perceptions more readily to how the patient was prior to their illness.  Health professionals appeared to be able to see that patients were adapting, relating this to their experience of working with people at the end of life.  They appeared to be torn in evaluating a patient's capability wellbeing, however, between relating this to their experience of the illness trajectory and what could therefore be expected for the patient, and relating it to their own personal capabilities in their own life.  These issues will be explored more extensively within the full paper. 

Overall, from this work it appears that ICECAP-SCM provides a feasible method of assessing capability wellbeing in those at the end of life and will potentially be useful for assessing these benefits for use in evaluative studies.  Completion of the measure by different groups will need, however, to be taken into account in interpreting the findings of such evaluations, and further exploration of issues of adaptation in this context will be important.