Tools to Assess Pain or Lack of Comfort in Dementia: A Content Analysis.

CONTEXT: There is need for tools to help detect pain or lack of comfort in persons unable to communicate. However, pain and (dis)comfort tools have not been compared, and it is unclear to what extent they discriminate between pain and other possible sources of discomfort, or even if items differ. OBJECTIVES: To map and compare items in tools that assess pain and the broader notion of discomfort or comfort in people with severe dementia or at the end of life. METHODS: Using qualitative content analysis with six classifications, we categorized each item of four thoroughly tested observational pain tools (Pain Assessment in Advanced Dementia [PAINAD], Pain Assessment Checklist for Seniors with Limited Ability to Communicate [PACSLAC], Doloplus-2, and draft Pain Assessment in Impaired Cognition [PAIC]), and four discomfort tools (including distress, comfort, and quality of life in severe dementia or at the end of life; Discomfort Scale-Dementia Alzheimer Type [DS-DAT], Disability Distress Assessment Tool [DisDAT], End-of-Life in Dementia-Comfort Assessment in Dying with Dementia [EOLD-CAD], and Quality of Life in Late-Stage Dementia [QUALID] scale). We calculated median proportions to compare distributions of categories of pain and discomfort tools. RESULTS: We found that, despite variable content across tools, items from pain and discomfort tools overlapped considerably. For example, positive elements such as smiling and spiritual items were more often included in discomfort tools but were not unique to these. Pain tools comprised more "mostly descriptive" (median 0.63 vs. 0.44) and fewer "highly subjective" items (0.06 vs. 0.18); some used time inconsistently, mixing present and past observations. CONCLUSION: This analysis may inform a more rigorous theoretical underpinning and (re)development of pain and discomfort tools and calls for empirical testing of a broad item pool for sensitivity and specificity in detecting and discriminating pain from other sources of discomfort.

Advance care planning and physician orders in nursing home residents with dementia: a nationwide retrospective study among professional caregivers and relatives.

CONTEXT: Advance care planning (ACP) is key to good palliative care for nursing home (NH) residents with dementia. OBJECTIVES: We examined the extent to which the family physicians (FPs), nurses, and the relative most involved in the resident's care are informed about ACP, written advance directives, and FP treatment orders (FP-orders) for NH residents dying with dementia. We also examined the congruence among FP, nurse, and relative regarding the content of ACP. METHODS: This was a representative nationwide post-mortem study (2010) in Flanders, Belgium, using random cluster sampling. In selected NHs, all deaths of residents with dementia in a three month period were reported. A structured questionnaire was completed by the FP, the nurse, and the patient's relative. RESULTS: We identified 205 deceased residents with dementia in 69 NHs. Residents expressed their wishes regarding end-of-life care in 11.8% of cases according to the FP. The FP and nurse spoke with the resident in 22.0% and 9.7% of cases, respectively, and with the relative in 70.6% and 59.5%, respectively. An advance directive was present in 9.0%, 13.6%, and 18.4% of the cases according to the FP, nurse, and the relative, respectively. The FP-orders were present in 77.3% according to the FP, and discussed with the resident in 13.0% and with the relative in 79.3%. Congruence was fair (FP-nurse) on the documentation of FP-orders (k=0.26), and poor to slight on the presence of an advance directive (FP-relative, k=0.03; nurse-relative, k=-0.05; FP-nurse k=0.12). CONCLUSION: Communication regarding care is rarely patient driven and more often professional caregiver or family driven. The level of congruence between professional caregivers and relatives is low.

Continuous deep sedation until death in nursing home residents with dementia: a case series.

OBJECTIVES: To describe the characteristics of continuous deep sedation until death and the prior decision-making process of nursing home residents dying with dementia and to evaluate this practice according to features reflecting sedation guideline recommendations. DESIGN: Epidemiological retrospective study completed using a case series analysis. SETTING: Flemish nursing homes in 2010. PARTICIPANTS: From a representative sample of 69 nursing homes, all residents who had dementia and had been continuously and deeply sedated until death over a period of 3 months were selected. MEASUREMENTS: Questionnaires to general practitioners (GPs), nurses, and relatives most involved in the care of the resident regarding the clinical characteristics of the resident, how sedation was decided upon and performed, quality of care, and dying. Advanced dementia was identified using the Global Deterioration and Cognitive Performance Scale. Whether this practice is in conformity with sedation guideline recommendations was also investigated. RESULTS: Eleven of 117 deceased residents with dementia (9.4%, 95% confidence interval (CI) = 4.0-14.8) and nine of 64 residents with advanced dementia (14.1%, 95% CI = 5.3-22.8) were sedated. Two of the 11 sedated residents were not considered to be terminal. Sedation duration ranged from 1 to 8 days. Two received artificial food and fluids during sedation. Five were partly or fully competent at admission and three in the last week. Four had expressed their wishes or had been involved in end-of-life decision-making; for eight residents, the GP discussed the resident's wishes with their relatives. Relatives reported that five of the residents had one or more symptoms while dying. Nurses of three residents reported that the dying process was a struggle. For two residents, sedation was effective. CONCLUSION: Continuous deep sedation until death for nursing home residents does not always guarantee a dying process free of symptoms and might be amenable to improvement.

Nursing home residents dying with dementia in Flanders, Belgium: a nationwide postmortem study on clinical characteristics and quality of dying.

OBJECTIVES: There is a lack of large-scale, nationwide data describing clinical characteristics and quality of dying of nursing home residents dying with dementia. We set out to investigate quality of end-of-life care and quality of dying of nursing home residents with dementia in Flanders, Belgium. DESIGN/SETTING/PARTICIPANTS: To obtain representativity, we conducted a postmortem study (2010) using random cluster sampling. In selected nursing homes, all deceased residents with dementia in a period of 3 months were reported. For each case, a structured questionnaire was filled in by the nurse most involved in care, the family physician, and the nursing home administrator. We used the Cognitive Performance Scale and Global Deterioration Scale to assess dementia. Main outcome measures were health status, clinical complications, symptoms at the end of life, and quality of dying. MEASUREMENTS: Health status, clinical complications, symptoms at the end of life, and quality of dying. RESULTS: We identified 198 deceased residents with dementia in 69 nursing homes (58% response rate). Age distribution was the same as all deceased residents with dementia in Flanders, 2010. Fifty-four percent had advanced dementia. In the last month of life, 95.5% had 1 or more sentinel events (eg, eating/drinking problems, febrile episodes, or pneumonia); most frequently reported symptoms were pain, fear, anxiety, agitation, and resistance to care. In the last week, difficulty swallowing and pain were reported most frequently. Pressure sores were present in 26.9%, incontinence in 89.2%, and cachexia in 45.8%. Physical restraints were used in 21.4% of cases, and 10.0% died outside the home. Comparing stages of dementia revealed few differences between groups regarding clinical complications, symptoms, or quality of dying. CONCLUSION: Regardless of the dementia stage, many nursing home residents develop serious clinical complications and symptoms in the last phase of life, posing major challenges to the provision of optimum end-of-life care.

Advance directives and physicians' orders in nursing home residents with dementia in Flanders, Belgium: prevalence and associated outcomes.

BACKGROUND: Advance care planning (ACP) is an important element of high-quality care in nursing homes, especially for residents having dementia who are often incompetent in decision-making toward the end of life. The aim of this study was describe the prevalence of documented ACP among nursing home residents with dementia in Flanders, Belgium, and associated clinical characteristics and outcomes. METHODS: All 594 nursing homes in Flanders were asked to participate in a retrospective cross-sectional postmortem survey in 2006. Participating homes identified all residents who had died over the last two months. A structured questionnaire was mailed to the nurses closely involved in the deceased resident's care regarding the diagnosis of dementia and documented care planning, i.e. advance patient directives, authorization of a legal representative, and general practitioners' treatment orders (GP orders). RESULTS: In 345 nursing homes (58% response rate), nurses identified 764 deceased residents with dementia of whom 62% had some type of documented care plan, i.e. advance patient directives in 3%, a legal representative in 8%, and GP orders in 59%. Multivariate logistic regression showed that the presence of GP orders was positively associated with receiving specialist palliative care in the nursing home (OR 3.10; CI, 2.07-4.65). Chances of dying in a hospital were lower if there was a GP order (OR 0.38; CI, 0.21-0.70). CONCLUSIONS: Whereas GP orders are relatively common among residents with dementia, advance patient directives and a legal representative are relatively uncommon. Nursing home residents receiving palliative care are more likely to have a GP order. GP orders may affect place of death.