It just didn’t work: the realities of quality assessment in the English health care context

Abstract

Aims: Assessment of care quality is integral to health and palliative care provision and there is a need to develop and implement outcome measures to assess quality. This study aimed to: (1) describe the implementation of a palliative care outcome measure in non-specialist palliative care settings and (2) to understand the implementation of the measure.

Method: Twenty-five non-specialist palliative care settings were purposely sampled and invited to implement a palliative care outcome measure. Fifteen settings agreed to take part. The research team provided training and support in the use of the measure. Data were collected on actual use of the measure and, via interviews with patients and nurses, on their experiences.

Results: The number of assessments was low (21 patients assessed against an anticipated minimum of 240). The analysis of nurses’ accounts identified important considerations in understanding the low response. Although nurses saw the implementation of the outcome measure as bringing opportunities for themselves, including their own professional development, and for the organisations they represent, including raising organisational profiles, there were a number of factors that acted as impediments. These include: perceived time to administer the paperwork; competence and confidence in recruiting patients and proceeding with informed consent; concerns about the effects of completing the measure with very ill patients; and the effects of nurses raising palliative care issues on their relationships with patients.

Conclusions: It is difficult to integrate outcome measures into routine clinical practice. Future interventions should consider how to tailor the implementation of outcome measures within existing working structures and provide education and training to enable nurses to deal with potentially sensitive palliative care issues.

Introduction

The World Health Organization (WHO) describes palliative care as ‘an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual’ (WHO, 2003). Assessing the quality of this care is an important issue for health systems internationally (Singer and Bowman, 2002).

No health system systematically assesses palliative care quality (Singer and Bowman, 2002). In England this has been in part been attributed to the development of palliative care services outside the statutory sector (Cooper and Hewison, 2002). The policy push in England towards health care quality assurance (Secretary of State for Health (1997), Secretary of State for Health (2000), 2000; Department of Health, 2000; Her Majesty's Government, 1999) requires the development of methods to assess care quality and to feed findings back for the improvement of health and palliative care practice and policy.

Debates on the definition of quality in health care have a long history (Sheps, 1955), and in palliative care, quality can be difficult to assess and measure (Glickman, 1997; Higginson, 1999). Outcome measurement is one component of quality assessment, which can be difficult because of the particular sensitivities of conducting research with palliative care patients (Beaver et al., 1999; de Raeve, 1994; Kristjanson et al., 1994; Daniels and Exley, 2001; Addington-Hall, 2002).

There are, however, a number of outcome measures tailored to palliative care (Hearn and Higginson, 1997; Massaro and McMillan, 2000; Salek et al., 2002; Ahmedzai and Hunt, 2003), but these have predominantly been used in specialist palliative care settings, rather than with palliative care patients in non-specialist settings, such as primary care, nursing homes and hospital wards. The Project to impROve Management Of Terminal illnEss (PROMOTE) aims to address the monitoring of end-of-life care in England by developing tools to assess quality of end of life care and effective methods to feedback the results of such assessments to commissioners and providers of care (Hughes et al., 2001). One component of the project was to develop and assess the use of the Palliative care Outcome Scale (POS) to evaluate the needs, problems and outcomes of patients with progressive illness in different healthcare settings.

The POS was developed following a literature review of palliative care outcome measures (Hearn and Higginson, 1997) and comprises a short, ten-item, measure that prospectively assess physical, psychological and spiritual domains of life. There is one open question to elicit main concerns, and with this exception, questions are scored on Likert scales. There are two complementary scales, one for patients and one for professionals. These assessments illuminate different people's perspectives and therefore produce different results (Rothman et al., 1991; Sneeuw et al., 2002), however, the professional questionnaire is an important source of information when patients are too ill to self-complete. In addition, comparison of the differing perspectives may provide valuable information for reflective learning and a focus for development of care and skills (Aspinal et al., 2002).

This paper reports our findings from the use of the POS with patients with palliative care needs in the hospital, nursing homes and primary care settings. This study aimed to: (1) describe the implementation of a palliative care outcome measure in non-specialist palliative care settings and (2) to understand the implementation of the measure.