Shared decision-making with older adults with cancer: Adaptation of a model through literature review and expert opinion.

OBJECTIVE: To provide a literature overview of characteristics of Shared Decision Making (SDM) with specific importance to the older adult population with cancer and to tailor an existing model of SDM in patients with cancer to the needs of older adults. METHODS: A systematic search of several databases was conducted. Eligible studies described factors influencing SDM concerning cancer treatment with adults aged 65 years or above, with any type of cancer. We included qualitative or mixed-methods studies. Themes were identified and discussed in an expert panel, including a patient-representative, until consensus was reached on an adjusted model. RESULTS: Overall 29 studies were included and nine themes were identified from the literature. The themes related to the importance of goal setting, need for tailored information provision, the role of significant others, uncertainty of evidence, the importance of time during and outside of consultations, the possible ill-informed preconceptions that health care professionals (HCPs) might have about older adults and the specific competencies they need to engage in the SDM process with older adults. No new themes emerged from discussion with expert panel. This study presents a visual model of SDM with older patients with cancer based on the identified themes. CONCLUSIONS: Our model shows key elements that are specific to SDM with older adults. Further research needs to focus on how to educate HCPs on the competencies needed to engage in SDM with older patients, and how to implement the model into everyday practice.

Trends in quality of care and dying perceived by family caregivers of nursing home residents with dementia 2005-2019.

BACKGROUND: Dementia palliative care is increasingly subject of research and practice improvement initiatives. AIM: To assess any changes over time in the evaluation of quality of care and quality of dying with dementia by family caregivers. DESIGN: Combined analysis of eight studies with bereaved family caregivers' evaluations 2005-2019. SETTING/PARTICIPANTS: Family caregivers of nursing home residents with dementia in the Netherlands (n = 1189) completed the End-of-Life in Dementia Satisfaction With Care (EOLD-SWC; quality of care) and Comfort Assessment in Dying (EOLD-CAD, four subscales; quality of dying) instruments. Changes in scores over time were analysed using mixed models with random effects for season and facility and adjustment for demographics, prospective design and urbanised region. RESULTS: The mean total EOLD-SWC score was 33.40 (SD 5.08) and increased by 0.148 points per year (95% CI, 0.052-0.244; adjusted 0.170 points 95% CI, 0.055-0.258). The mean total EOLD-CAD score was 30.80 (SD 5.76) and, unadjusted, there was a trend of decreasing quality of dying over time of -0.175 points (95% CI, -0.291 to -0.058) per year increment. With adjustment, the trend was not significant (-0.070 EOLD-CAD total score points, 95% CI, -0.205 to 0.065) and only the EOLD-CAD subscale 'Well being' decreased. CONCLUSION: We identified divergent trends over 14 years of increased quality of care, while quality of dying did not increase and well-being in dying decreased. Further research is needed on what well-being in dying means to family. Quality improvement requires continued efforts to treat symptoms in dying with dementia.

Experiences with the Liverpool care pathway for the dying patient in nursing home residents: a mixed-method study to assess physicians' and nurse practitioners' perceptions.

BACKGROUND: The Liverpool care pathway for the dying patient (LCP) is a multidisciplinary tool developed for the dying phase for use in palliative care settings. The literature reports divergent experiences with its application in a nursing home setting related to its implementation and staff competencies. The aim of this study is to understand how the LCP is being used in the context of the nursing home, including for residents with dementia, and experienced from the perspectives of those responsible for medical treatment in nursing homes. METHODS: A mixed-methods approach was used, consisting of a survey followed by interviews. A link to a 9-item online survey with closed and open-ended questions was emailed to all physicians and nurse practitioners of 33 care organisations with nursing homes in three regions of the Netherlands (North, West and South). In addition, 10 respondents with particularly positive or negative experiences were selected for semi-structured interviews. RESULTS: The survey was completed by 159 physicians and nurse practitioners. The respondents were very positive on the content and less positive on the use of the LCP, although they reported difficulties identifying the right time to start the LCP, especially in case of dementia. Also using the LCP was more complicated after the implementation of the electronic health record. The LCP was judged to be a marker of quality for the assessment of symptoms in the dying phase and communication with relatives. CONCLUSION: An instrument that prompts regular assessment of a dying person was perceived by those responsible for (medical) care to contribute to good care. As such, the LCP was valued, but there was a clear need to start it earlier than in the last days or hours of life, a need for a shorter version, and for integration of the LCP in the electronic health record. Regular assessments with an instrument that focusses on quality of care and good symptom control can improve palliative care for nursing home residents with and without dementia.

Change in quality of life after a multidisciplinary intervention for people with dementia: A cluster randomized controlled trial.

OBJECTIVE: The objective of this study was to examine whether implementation of a stepwise multicomponent intervention (STA OP!) for challenging behavior and pain affects quality of life (QoL) of nursing home residents with moderate to severe dementia after 3 and 6 months. METHODS: A cluster randomized controlled trial was conducted in 12 nursing homes. Both control (n = 140) and intervention group (=148) received training, the intervention group was also treated using the STA OP! INTERVENTION: At baseline, 3 and 6 months QoL was assessed using the 6 QUALIDEM domains applicable to moderate and severe dementia. Linear mixed models were used to compare changes in QoL domains between the 2 groups over time. RESULTS: After both 3 and 6 months, there was no change, and no difference in change, between the 2 groups in the domains Care relationship, Positive affect, Negative affect, and Social relations. Between 0 and 3 months, a positive effect was seen in the domain Restless tense behavior with a regression coefficient of ß: 0.95 (95% confidence interval [CI], 0.36-1.54). Between 3 and 6 months, a negative effect was seen on the domain Restless tense behavior ß: -0.98 (95% CI, -1.60 to -0.36) and a positive effect in the domain Social isolation, ß: 0.64 (95% CI, 0.12-1.17). CONCLUSIONS: The stepwise intervention STA OP! affects the QUALIDEM domains in different ways: there was a lowering of Restless tense behavior in the short term, which reverted back to the initial level in the longer term, and a lowering of Social isolation in the longer term.

Characteristics Associated with Quality of Life in Long-Term Care Residents with Dementia: A Cross-Sectional Study.

BACKGROUND: To determine which characteristics are associated with quality of life (QOL) in residents with moderate to very severe dementia in long-term care facilities (LTCFs). MATERIAL AND METHODS: This was a cross-sectional analysis of a cluster randomized controlled study in 12 Dutch LTCFs that enrolled 288 residents, with moderate to severe dementia assessed with the Reisberg Global Deterioration Scale (Reisberg GDS) and QOL with the QUALIDEM. Characteristics that were hypothesized to be associated with the six domains of QOL (applicable to very severe dementia) included demographic variables, activities of daily living (Katz ADL), cognitive performance (Cognitive Performance Scale; CPS), pain (Pain Assessment Checklist for Seniors with Limited Ability to Communicate; PACSLAC-D), neuropsychiatric symptoms (Neuropsychiatric Inventory-Nursing Home Version; NPI-NH) and comorbidities. RESULTS: Multivariate logistic regression modelling showed associations with age in the domain Social isolation [odds ratio, OR, 0.95 (95% confidence interval, CI, 0.91-0.99)], ADL level in the domain Positive affect [OR 0.89 (95% CI 0.83-0.95)] and the domain Social relations [OR 0.87 (95% CI 0.81-0.93)], severity of dementia in the domain Social relations [OR 0.28 (95% CI 0.12-0.62)] and in the domain Social isolation [OR 2.10 (95% CI 1.17-3.78)], psychiatric disorders in the domain Positive affect [OR 0.39 (95% CI 0.17-0.87)] and pulmonary diseases in the domain Negative affect [OR 0.14 (95% CI 0.03-0.61)] of the QUALIDEM. Neuropsychiatric symptoms were independently associated with all six domains of the QUALIDEM [OR 0.93 (95% CI 0.90-0.96) to OR 0.97 (95% CI 0.95-0.99)]. Pain was associated with the domains Care relationship [OR 0.92 (95% CI 0.84-1.00)] and Negative affect [OR 0.92 (95% CI 0.85-1.00)]. CONCLUSION: QOL in dementia is independently associated with age, ADL, dementia severity, pain, psychiatric disorders, pulmonary diseases and neuropsychiatric symptoms. It is possible to detect persons with dementia at risk for a lower QOL. This information is important for developing personalized interventions to improve QOL in persons with dementia in LTCFs.

Symptoms and treatment when death is expected in dementia patients in long-term care facilities.

BACKGROUND: Although dementia at the end of life is increasingly being studied, we lack prospective observational data on dying patients. In this study symptoms were observed in patients with dementia in the last days of life. METHODS: When the elderly care physicians in two Dutch nursing homes expected death within one week, symptoms of (dis)comfort, pain and suffering were observed twice daily. For this the Pain Assessment in Advanced Dementia (PAINAD; range 0-10), Discomfort Scale-Dementia of Alzheimer Type (DS-DAT; range 0-27), End-Of-Life in Dementia-Comfort Assessment in Dying (EOLD-CAD; range 14-42) and an adapted version of the Mini-Suffering State Examination (MSSE; range 0-9), were used. Information on care, medical treatment and treatment decisions were also collected. RESULTS: Twenty-four participants (median age 91 years; 23 females), were observed several times (mean of 4.3 observations (SD 2.6)), until they died. Most participants (n = 15) died from dehydration/cachexia and passed away quietly (n = 22). The mean PAINAD score was 1.0 (SD 1.7), DS-DAT 7.0 (SD 2.1), EOLD-CAD 35.1 (SD 1.7), and MSSE 2.0 (SD 1.7). All participants received morphine, six received antibiotics, and rehydration was prescribed once. CONCLUSION: In these patients with dementia and expected death, a low symptom burden was observed with validated instruments, also in dehydrated patients without aggressive treatment. A good death is possible, but might be enhanced if the symptom burden is regularly assessed with validated instruments. The use of observation tools may have influenced the physicians to make treatment decisions.

Psychometric properties of instruments to measure the quality of end-of-life care and dying for long-term care residents with dementia.

PURPOSE: Quality of care for long-term care (LTC) residents with dementia at the end-of-life is often evaluated using standardized instruments that were not developed for or thoroughly tested in this population. Given the importance of using appropriate instruments to evaluate the quality of care (QOC) and quality of dying (QOD) in LTC, we compared the validity and reliability of ten available instruments commonly used for these purposes. METHODS: We performed prospective observations and retrospective interviews and surveys of family (n = 70) and professionals (n = 103) of LTC decedents with dementia in the Netherlands. RESULTS: Instruments within the constructs QOC and QOD were highly correlated, and showed moderate to high correlation with overall assessments of QOC and QOD. Prospective and retrospective ratings using the same instruments differed little. Concordance between family and professional scores was low. Cronbach's alpha was mostly adequate. The EOLD-CAD showed good fit with pre-assumed factor structures. The EOLD-SWC and FPCS appear most valid and reliable for measuring QOC, and the EOLD-CAD and MSSE for measuring QOD. The POS performed worst in this population. CONCLUSIONS: Our comparative study of psychometric properties of instruments allows for informed selection of QOC and QOD measures for LTC residents with dementia.