Nurses' experiences of clinical use of a quality of life instrument in palliative care

Contemporary Nurse, Dec, 2007 by Carina Lundh Hagelin, Carol Tishelman, Yvonne Wengstrom, Carl Johan Furst

ABSTRACT

This pilot study explored how nursing staff experienced clinical use of a quality of life (QoL) instrument as complement to their standard assessment interview. Twenty-six of 36 Registered Nurses working in one palliative care service responded in writing to six open questions. We found that nurses described positive features in using the QoL instrument related to how it supported their professional role, eased therapeutic contact with patients, and in terms of the outcomes of its use. Others noted difficulties incorporating the tool into the framework of their traditional nursing assessment, noting instrument and situation-specific limitations, with attitudes and comfort with the questionnaire affecting its use. Clinical use of QoL tools may be facilitated by emphasizing their role as a first screening assessment, and acknowledging and supporting the importance of clinical expertise and the patient-nurse relationship in further more focussed assessments and nursing care.

Key Words palliative care; nursing; self-assessment questionnaire; quality of life; qualitative research

INTRODUCTION AND AIM

The explorative pilot study presented here was initiated in an effort to address questions raised by our previous research involving the clinical use of a quality of life instrument in a palliative care setting in Sweden. To our surprise, despite a formal admission procedure for patients, including both a direct nurse-led interview and assessment, complemented by a systematic evaluation using a well-established quality of life instrument within two days, we found that the quality of life assessment form was often not completed. We noted that patients without quality of life assessments had significantly shorter length of stay at the palliative care facility, often due to shorter survival times, than those patients with completed questionnaires (Lundh Hagelin, Seiger & Furst 2006). This indicated that missing data might not be random, but be due to a systematic problem on some level. This study was therefore planned to help us understand these data, by exploring the perspective of the nursing staff with regard to their systematic assessments using a quality of life instrument in palliative care.

BACKGROUND

According to the World Health Organization, the primary goal of palliative care is to support the patient's quality of life (QoL) (Sepulveda et al. 2002; WHO 1990; WHO 2002), through prevention and relief of suffering, including early identification of pain and other physical symptoms. In palliative care, salient aspects that might impact on the patient's QoL also include disease management, psychological, social, and spiritual issues, practical problems including functional abilities, as well as patient and family members' expectations, needs, hopes, and fears including those related to end of life care, death management, and loss and grief (Ferrell and Coyle 2001; Ferris et al. 2002; Muir, McDonagh & Gooding 2002). The breadth of these aspects identify the need for a multidimensional approach in assessments of the patient/family situation (Vignaroli & Bruera 2006).

Increasingly, it is argued that an efficient assessment is central to developing an appropriate care plan for patients and families (Ferrell & Coyle 2001; Ferris et al. 2002). Such assessments can be carried out in a variety of ways using more or less structured alternatives, such as interviews or observations (Bjordal 2004; Ferrell & Coyle 2001) and a range of assessment scales. Assessment tools can take different forms, e.g. self-reported symptom questionnaires, quality of life questionnaires and checklists (Bjordal 2004), which can be supplemented by physical examinations, laboratory and/or radiology procedures (Ferris et al. 2002). A thorough assessment of a patient's situation is thus a complex exercise, with each health care discipline contributing specific expertise and skills into a holistic framework.

In palliative situations, it is not always self-evident as to which of these aspects should be included when assessing a new patient, as these may vary by patient as well as by time point in a disease trajectory. Pearce and Lugton (1999) differentiate between different types of nursing assessments, describing an initial brief 'screening assessment' to identify unmet needs, followed by a more comprehensive 'focused assessment' when screening indicates a possible problem. They emphasize that assessments should be a continuous process informed by the growing relationship between a patient/ family and responsible nurse.

Clinical use of quality of life and symptom measurement tools

Although many QoL instruments were originally developed for measurement at group levels in clinical trials, more recently increasing attention is being paid to the use of QoL assessments for providing detailed information at the individual level (Frost et al. 2007). For example, Frost et al. (2007), active within the (QoL) Clinical Significance Consensus Meeting Group suggest that patients' self-reported QoL can serve as a basis for their further discussion with professionals about functioning and specific problem areas. They consider it is ideal if patients complete the QoL instrument at baseline, so that the individual is able to act as his/her own control in evaluating the usefulness of interventions.