Measuring the suffering of end-stage dementia: reliability and validity of the Mini-Suffering State Examination

Abstract

Assessment of suffering is extremely important in dying end-stage dementia patients (ESDP). We have developed and examined the reliability and validity of the Mini-Suffering State Examination (MSSE), in 103 consecutive bedridden ESDP. Main outcome measures included inter-observer reliability and concurrent validity. Reliability of the MSSE questionnaire was satisfactory, with Cronbach α values of 0.735 and 0.718 for the two physicians (Ph-1, Ph-2), respectively. The κ agreement coefficient was 0.791. There was a high agreement for seven items (κ 0.882–0.972) and a substantial agreement for the other three items (κ 0.621–0.682) of the MSSE. MSSE was validated versus the comfort assessment in dying with dementia (CAD-EOLD) scale and resulted in a significant Pearson correlation (r=−0.796, P<0.001). We conclude that the MSSE scale is a reliable and valid clinical tool, recommended for evaluating the severity of the patient’s condition and the level of suffering of ESDP. Use of MSSE may improve medical management and facilitate communication between patients and caregivers.

Introduction

Suffering and satisfaction are two basic sensations, perceptions, emotions and thoughts of any human being, and coping with suffering or fear of suffering at the end-of-life is part of everyone’s life-cycle. The concept of suffering has been well described (Cassel, 1982) and encompasses, at a minimum, aspects of physical pain, psychological distress and spiritual concerns. Levels of suffering are believed to increase with aging and the various losses associated with getting older. Old people at end-of-life may be too demented to communicate their needs, understand treatment options or articulate emotional needs about the dying process (Siegler and Levin, 2000). Medical and nursing staffs are expected to diagnose symptoms and syndromes of disease, but not necessarily to be aware of the suffering of the patient (Cassel, 1999). This may undermine the caregiver’s ability to accurately assess the patient’s needs. Various aspects of end-of-life for patients with advanced dementia have been discussed, yet issues of suffering and the appropriate health care for such patients remain controversial (Luchins and Hanrahan, 1993, Hurley et al., 2000). The nature of suffering makes it difficult to assess, and there have been no reports in the medical literature on methods of examining the level of suffering. This is in contrast with various clinical instruments designed to measure quality of life or satisfaction with care at end-of-life. Moreover, the suffering of end-stage dementia patients (ESDP) is often accompanied by inability to verbally indicate the extent of suffering. The assessment of suffering is crucial for its alleviation, and becomes critical once options of physician-assisted suicide and euthanasia are considered (Fins and Bachetta, 1995).

The purpose of this study is to evaluate the inter-observer reliability and validity of a clinically-based tool designed to evaluate suffering of ESDP by means of the Mini-Suffering State Examination (MSSE) (Aminoff, 1999) (Table 1).