Integrated palliative homecare in advanced dementia: reduced healthcare utilisation and costs.

OBJECTIVES: To determine the economic benefit of an integrated home-based palliative care programme for advanced dementia (Programme Dignity), evaluation is required. This study aimed to estimate Programme Dignity's average monthly cost from a provider's perspective; and compare healthcare utilisation and costs of programme patients with controls, accounting for enrolment duration. METHODS: This was a retrospective cohort study. Home-dwelling patients with advanced dementia (stage 7 on the functional assessment staging in Alzheimer's disease) with a history of pneumonia, albumin <35 g/L or tube-feeding and known to be deceased were analysed (Programme Dignity=184, controls=139). One-year programme operational costs were apportioned on a per patient-month basis. Cumulative healthcare utilisation and costs were examined at 1, 3 and 6 months look-back from death. Between-group comparisons used Poisson, zero-inflated Poisson regressions and generalised linear models. RESULTS: The average monthly programme cost was SGD$1311 (SGD-Pounds exchange rate: 0.481) per patient. Fully enrolled programme patients were less likely to visit the emergency department (incidence rate ratios (IRRs): 1 month=0.56; 3 months=0.19; 6 months=0.10; all p<0.001), be admitted to hospital (IRRs: 1 month=0.60; 3 months=0.19; 6 months=0.15; all p<0.001), had a lower cumulative length of stay (IRRs: 1 month=0.78; 3 months=0.49; 6 months=0.24; all p<0.001) and incurred lesser healthcare utilisation costs (ß-coefficients: 1 month=0.70; 3 months=0.40; 6 months=0.43; all p<0.01) at all time-points examined. CONCLUSION: Programme Dignity for advanced dementia reduces healthcare utilisation and costs. If scalable, it may benefit more patients wishing to remain at home at the end-of-life, allowing for a potentially sustainable care model to cope with rapid population ageing. It contributes to the evidence base of advanced dementia palliative care and informs healthcare policy making. Future studies should estimate informal caregiving costs for comprehensive economic evaluation.

Medical cost of advanced illnesses in the last-year of life-retrospective database study.

OBJECTIVE: This study aims to quantify medical care utilisation, and to describe the cost trajectories of individuals with advanced illnesses in the last-year of life, differentiated by advanced cancer, end-stage organ failure and progressive neurological disorders. METHODS: This retrospective database study included decedents who had previous inpatient or outpatient encounters at a public hospital in Singapore. Patients with advanced diseases were identified based on diagnostic codes and clinical criteria. Using a look-back approach, the amount of healthcare services utilised and the corresponding mean monthly and annual costs to the healthcare system in the last 12-months of life were quantified. RESULTS: The last 12-months of life among 6,598 decedents was associated with £20,524 (95% confidence interval: £20,013-£21,036) in medical costs, of which 80% was accounted for by inpatient admissions. Costs increased sharply in the last 2-months of life, with a large proportion of monthly costs accounted for by inpatient admissions which rose rapidly from 61% at 12-months prior to death to 94% in the last-month of life. Compared to patients with cancer, individuals diagnosed with non-cancer advanced illnesses accumulated 1.6 times more healthcare costs in the last-year of life with significant differences across patients with end-stage organ failure and progressive neurological disorders. CONCLUSION: Healthcare costs varied across disease conditions at the end-of-life. With advance care planning and close collaboration between the inpatient clinical team and the community providers, it may be possible to re-direct some of the hospitalisation costs to community-based palliative care services.

Deaths in dementia: a scoping review of prognostic variables.

OBJECTIVES: To identify the types of factors included in research examining mortality in patients with dementia, and to stratify the identified factors by care settings. DESIGN: We systematically searched PubMed, Embase, PsycINFO and the Cumulative Index to Nursing and Allied Health Literature (CINAHL) databases, and identified grey literature from the Networked Digital Library of Theses and Dissertations, Open Grey and Grey Literature Report. Two authors independently screened for eligibility of studies. Independent reviewers extracted relevant study information. We conducted a narrative synthesis of the data. RESULTS: We identified 8254 articles, of which 94 met the inclusion criteria. More than half (n=53) were published between 2009 and 2018 with half from Europe. Studies were conducted across hospices/nursing homes (n=25), hospital (n=23), outpatient clinics (n=21), mixed settings (n=15) and in the community (n=10). Nearly 60% adopted a prospective cohort study design with 87% performing multivariable analysis. Overall, 239 variables were identified and classified into six themes-individual factors, health status, functional ability, cognition and mental health, treatments and health system factors. Although a general set of factors were common across all studies, when stratified by care settings, variations were seen in the specific variables included. CONCLUSION: Identifying prognostic variables relevant to the dementia population in each setting is key to facilitate appropriate care plans and to ensure timely access to palliative care options. Future research should also focus on ensuring the replicability of prognostic models and to generate a better understanding of the direct and interacting influence of the identified factors on mortality.

Prognostication in Home-Dwelling Patients with Advanced Dementia: The Palliative Support DEMentia Model (PalS-DEM).

OBJECTIVE: Difficulties with prognostication prevent more patients with advanced dementia from receiving timely palliative support. The aim of this study is to develop and validate a prognostic model for 6-month and 1-year mortality in home-dwelling patients with advanced dementia. DESIGN: Prospective cohort study. SETTING AND PARTICIPANTS: The data set of 555 home-dwelling patients with dementia at Functional Assessment Staging Test stage 7 was split into derivation (n = 275) and validation (n = 280) cohorts. METHODS: Cox proportional hazards regression modeled survival in the derivation cohort using prognostic variables identified in univariate analysis. The model was validated internally and using 10-fold cross-validation. Area under the receiver operating characteristic curve measured the accuracy of the final model. RESULTS: Four hundred nineteen (75.5%) patients died with a median follow-up of 47 days [interquartile range (IQR) 161]. Prognostic variables in the multivariate model included serum albumin level, dementia etiology, number of homecare admission criteria fulfilled, presence of moderate to severe chronic kidney disease, peripheral vascular disease, quality of life in late-stage dementia scores, housing type, and the Australian National Sub-Acute and Non-Acute Patient palliative care phase. The model was refined into a parsimonious 6-variable model [Palliative Support DEMentia Model (PalS-DEM)] consisting of age, dementia etiology, Functional Assessment Staging Test stage, Charlson Comorbidity Index scores, Australian National Sub-Acute and Non-Acute Patient palliative care phase, and 30-day readmission frequency for the prediction of 1-year mortality. The area under the receiver operating characteristic curve was 0.65 (95% confidence interval 0.59-0.70). Risk scores categorized patients into 3 prognostic groups, with a median survival of 175 days (IQR 365), 104 days (IQR 246), and 19 days (IQR 88) for the low-risk (0‒1 points), moderate-risk (2‒4), and high-risk (≥5) groups, respectively. CONCLUSIONS AND IMPLICATIONS: The PalS-DEM identifies patients at high risk of death in the next 1 year. The model produced consistent survival results across the derivation, validation, and cross-validation cohorts and will help healthcare providers identify patients with advanced dementia earlier for palliative care.

PROgnostic Model for Advanced Cancer (PRO-MAC).

OBJECTIVE: To develop and validate a simple prognostic tool for early prediction of survival of patients with advanced cancer in a tertiary care setting. DESIGN: Prospective cohort study with 2 years' follow-up. SETTING: Single tertiary teaching hospital in Singapore. PARTICIPANTS: The study includes consecutive patients diagnosed with advanced cancer who were referred to a palliative care unit between 2013 and 2015 (N=840). Data were randomly split into training (n=560) and validation (n=280) sets. RESULTS: 743 (88.5%) patients died with a mean follow-up of 97.0 days (SD 174.0). Cox regression modelling was used to build a prognostic model, cross-validating with six randomly split dataset pairs. Predictor variables for the model included functional status (Palliative Performance Scale, PPS V.2), symptoms (Edmonton Symptom Assessment System, ESASr), clinical assessment (eg, the number of organ systems with metastasis, serum albumin and total white cell count level) and patient demographics. The area under the receiver operating characteristic curve using the final averaged prognostic model was between 0.69 and 0.75. Our model classified patients into three prognostic groups, with a median survival of 79.0 days (IQR 175.0) for the low-risk group (0-1.5 points), 42.0 days (IQR 75.0) for the medium-risk group (2.0-5.5 points), and 15.0 days (IQR 28.0) for the high-risk group (6.0-10.5 points). CONCLUSIONS: PROgnostic Model for Advanced Cancer (PRO-MAC) takes into account patient and disease-related factors and identify high-risk patients with 90-day mortality. PPS V.2 and ESASr are important predictors. PRO-MAC will help physicians identify patients earlier for supportive care, facilitating multidisciplinary, shared decision-making.

Advanced dementia: an integrated homecare programme.

OBJECTIVES: We established an integrated palliative homecare programme for advanced dementia. This study explores patients' symptoms and quality-of-life and their association with enteral feeding, evaluates the impact of the programme on these parameters and examines familial caregiver burden. METHODS: This is a prospective cohort study. Patients at Functional Assessment Stage 7, with an albumin level <35 g/L, pneumonia or enteral feeding were recruited. At baseline and regular intervals, the multidisciplinary homecare team used the Pain Assessment in Advanced Dementia, Mini Nutritional Assessment and Neuropsychiatric Inventory Questionnaire (NPI-Q) to identify patients' symptoms, and the Quality of Life in Late-Stage Dementia (QUALID) tool to assess quality-of-life as primary outcomes, stratified by feeding status. The Zarit Burden Interview (ZBI) investigated caregiver burden, stratified by living arrangement and availability of stay-in help. Mann-Whitney U and χ2 tests compared continuous and categorical variables respectively between groups while Wilcoxon signed-rank test compared assessment scores at baseline and on review. RESULTS: At baseline, 49.2% of the 254 patients had pain, 92.5% were malnourished and 85.0% experienced neuropsychiatric challenges. Patients on enteral feeding had lower NPI-Q score (median=3; IQR 1-6) than orally fed patients ((median=4; IQR 2-7), p=0.004) and higher QUALID score (median=25; IQR 21-30 vs median=21; IQR 17-25 for orally fed patients), p<0.0001, indicating a better quality-of-life for orally fed patients. Both symptoms and quality-of-life improved significantly for the 53 patients reviewed at the fifth month. Median ZBI score for caregivers was 26 (IQR 15-36). Having stay-in help reduced it from 39.5 (IQR 25-49) to 25 (IQR 15-35), p=0.001. CONCLUSION: An integrated multidisciplinary palliative homecare team with geriatric training that is accessible all-hours addressed the needs of home-dwelling patients with advanced dementia, improved their quality-of-life and supported families to care for them at home.

Comfort and Satisfaction With Care of Home-Dwelling Dementia Patients at the End of Life.

CONTEXT: Despite the preference to pass away at home, many dementia patients die in institutions, resulting in a paucity of studies examining end-of-life care outcomes in the home setting. OBJECTIVE: The objective of this study was to identify modifiable factors associated with the comfort of dementia patients dying at home and families' satisfaction with care. METHODS: This is a prospective cohort study conducted from October 2014 to April 2019 in Singapore. Dementia patients at Stage 7 on the Functional Assessment Staging Scale, with albumin <35 g/L, enteral feeding, or pneumonia, were recruited from a palliative homecare program. Independent variables included demographics, medical information, and care preferences. The Comfort Assessment in Dying with Dementia scale assessed dying patients' comfort, whereas the Satisfaction with Care at the End-of-Life in Dementia scale evaluated family caregivers' satisfaction two months after bereavement. Gamma regression identified factors independently associated with comfort and satisfaction. RESULTS: The median age of 202 deceased patients whose comfort was assessed was 88 years. Anti-cholinergic prescription (60.4% of patients) [ß (95% CI) = 1.823 (0.660-2.986), P = 0.002] was positively associated with comfort, whereas opioid prescription (89.6%) [ß (95% CI) = -2.179 (-4.107 to -0.251), P = 0.027] and >1 antibiotic courses used in the last two weeks of life (77.2%) [ß (95% CI) = -1.968 (-3.196 to -0.740), P = 0.002] were negatively associated. Independent factors associated with families' satisfaction with care were comfort [ß (95% CI) = 0.149 (0.012-0.286), P = 0.033] and honoring of medical intervention preferences (96.0%) [ß (95% CI) = 3.969 (1.485-6.453), P = 0.002]. CONCLUSION: Achieving comfort and satisfaction with care for dementia patients dying at home involves an interplay of modifiable factors. Honoring medical intervention preferences, such as those with palliative intent associated with patients' comfort, determined families' satisfaction with care.

Individual, clinical and system factors associated with the place of death: A linked national database study.

BACKGROUND: Many middle- and high-income countries face the challenge of meeting preferences for home deaths. A better understanding of associated factors could support the design and implementation of policies and practices to enable dying at home. This study aims to identify factors associated with the place of death in Singapore, a country with a strong sense of filial piety. SETTINGS/PARTICIPANTS: A retrospective cohort of 62,951 individuals (≥21 years old) who had died from chronic diseases in Singapore between 2012-2015 was obtained. Home death was defined as a death that occurred in a private residence whereas non-home deaths occurred in hospitals, nursing homes, hospices and other locations. Data were obtained by extracting and linking data from five different databases. Hierarchical multivariable logistic regression models were used to examine the effects of individual, clinical and system factors sequentially. RESULTS: Twenty-eight percent of deaths occurred at home. Factors associated with home death included being 85 years old or older (OR 4.45, 95% CI 3.55-5.59), being female (OR 1.21, 95% CI 1.16-1.25), and belonging to Malay ethnicity (OR 1.91, 95% CI 1.82-2.01). Compared to malignant neoplasm, deaths as a result of diabetes mellitus (OR 1.93, 95% CI 1.69-2.20), and cerebrovascular diseases (OR 1.28, 95% CI 1.19-1.36) were also associated with a higher likelihood of home death. Independently, receiving home palliative care (OR 3.45, 95% CI 3.26-3.66) and having a documented home death preference (OR 5.08, 95% CI 3.96-6.51) raised the odds of home deaths but being admitted to acute hospitals near the end-of-life was associated with lower odds (OR 0.92, 95% CI 0.90-0.94). CONCLUSION: Aside from cultural and clinical factors, system-based factors including access to home palliative care and discussion and documentation of preferences were found to influence the likelihood of home deaths. Increasing home palliative care capacity and promoting advance care planning could facilitate home deaths if this is the desired option of patients.

Cost of Medical Care of Patients with Advanced Serious Illness in Singapore (COMPASS): prospective cohort study protocol.

BACKGROUND: Advanced cancer significantly impacts quality of life of patients and families as they cope with symptom burden, treatment decision-making, uncertainty and costs of treatment. In Singapore, information about the experiences of advanced cancer patients and families and the financial cost they incur for end-of-life care is lacking. Understanding of this information is needed to inform practice and policy to ensure continuity and affordability of care at the end of life. The primary objectives of the Cost of Medical Care of Patients with Advanced Serious Illness in Singapore (COMPASS) cohort study are to describe changes in quality of life and to quantify healthcare utilization and costs of patients with advanced cancer at the end of life. Secondary objectives are to investigate patient and caregiver preferences for diagnostic and prognostic information, preferences for end-of-life care, caregiver burden and perceived quality of care and to explore how these change as illness progresses and finally to measure bereavement adjustment. The purpose of this paper is to present the COMPASS protocol in order to promote scientific transparency. METHODS: This cohort study recruits advanced cancer patients (n = 600) from outpatient medical oncology clinics at two public tertiary healthcare institutions in Singapore. Patients and their primary informal caregiver are surveyed every 3 months until patients' death; caregivers are followed until 6 months post patient death. Patient medical and billing records are obtained and merged with patient survey data. The treating medical oncologists of participating patients are surveyed to obtain their beliefs regarding care delivery for the patient. DISCUSSION: The study will allow combination of self-report, medical, and cost data from various sources to present a comprehensive picture of the end-of-life experience of advanced cancer patients in a unique Asian setting. This study is responsive to Singapore's National Strategy for Palliative Care which aims to identify opportunities to meet the growing need for high quality care for Singapore's aging population. Results will also be of interest to policy makers and researchers beyond Singapore who are interested to understand and improve the end-of-life experience of cancer patients. TRIAL REGISTRATION: NCT02850640 (Prospectively registered on June 9, 2016).

Prediction of Poor Short-Term Prognosis and Unmet Needs in Advanced Chronic Obstructive Pulmonary Disease: Use of the Two-Minute Walking Distance Extracted from a Six-Minute Walk Test.

OBJECTIVES: Prognostic challenges hinder the identification of patients with advanced chronic obstructive pulmonary disease (COPD) for timely palliative interventions. We postulate that a two-minute derivative (two-minute walking distance [2MWD]) of a standard six-minute walk test (6MWT) can identify frail subjects with poorer survival for early palliative intervention. The primary outcome of interest is mortality at 18 months. Secondary objectives include evaluation of the relationship between the 2MWD and ability to self-care, dyspnea-related disabilities, nutrition, forced expiratory volume in first second (FEV1), quality of life (QoL), and comorbidity burden. DESIGN AND SETTING: One hundred twenty-four subjects with stage 3 and 4 COPD were recruited and followed up. Ability to self-care, dyspnea-related disabilities, airflow limitation, nutrition, and QoL were measured by using modified Barthel index (MBI), Modified Medical Research Council (MMRC) dyspnea scale, FEV1 (% predicted), BODE [BMI(B), FEV1(O), MMRC(D), 6MWT(E)] index, updated ADO [Age(A), MMRC(D), FEV1(O)] index, Subjective Global Assessment (SGA), and St. George's Respiratory Questionnaire (SGRQ), respectively. Survival data were prospectively collected and analyzed. RESULTS: The 2MWD correlates highly with BODE and predicts updated ADO independent of age, co-morbidities, long-term oxygen therapy (LTOT), body mass index, and FEV1. Log-rank test performed with Kaplan-Meier plots demonstrates that 2MWD ≤80 m significantly predicts survival time (p < 0.05). Cox proportional hazard regression shows a 3.6-time greater probability of 18-month mortality (hazard ratio [HR] 3.57; 95% confidence interval [CI] 1.26-10.13; p < 0.05). In addition, 2MWD strongly predicted MBI and MMRC, independent of age, co-morbidities, LTOT, body mass index, and FEV1. Subjects with 2MWD ≤80 m have a poorer ability to self-care (median MBI 90 vs. 100), lower FEV1 (32.9% ± 9.8% vs. 38.1% ± 9.4%), poorer QoL (mean SGRQ 46.6 ± 16.2 vs. 36.6 ± 13.3), and greater dyspnea-related disability (mean MMRC 1.7 ± 0.7 vs. 0.9 ± 0.6), and they are more malnourished (40.4% vs. 9.7%; RR 1.51) (all p < 0.001). CONCLUSION: 2MWD ≤80 m identifies subjects with higher mortality, greater functional dependence, poorer in nutrition, greater dyspnea, and lower QoL. Incorporation of 2MWD into composite prognostic indices can enhance predictive accuracy and identify patients requiring early proactive palliative interventions.

Integrating palliative care across settings: A retrospective cohort study of a hospice home care programme for cancer patients.

BACKGROUND: Terminally ill patients at the end-of-life do transit between care settings due to their complex care needs. Problems of care fragmentation could result in poor quality of care. AIM: We aimed to evaluate the impact of an integrated hospice home care programme on acute care service usage and on the share of home deaths. SETTINGS/PARTICIPANTS: The retrospective study cohort comprised patients who were diagnosed with cancer, had an expected prognosis of 1 year or less, and were referred to a home hospice. The intervention group comprised deceased patients enrolled in the integrated hospice home care programme between September 2012 and June 2014. The historical comparison group comprised deceased patients who were referred to other home hospices between January 2007 and January 2011. RESULTS: There were 321 cases and 593 comparator subjects. Relative to the comparator group, the share of hospital deaths was significantly lower for programme participants (12.1% versus 42.7%). After adjusting for differences at baseline, the intervention group had statistically significantly lower emergency department visits at 30 days (incidence rate ratio: 0.38; 95% confidence interval: 0.31-0.47), 60 days (incidence rate ratio: 0.61; 95% confidence interval: 0.54-0.69) and 90 days (incidence rate ratio: 0.69; 95% confidence interval: 0.62-0.77) prior to death. Similar results held for the number of hospitalisations at 30 days (incidence rate ratio: 0.48; 95% confidence interval: 0.40-0.58), 60 days (incidence rate ratio: 0.71; 95% confidence interval: 0.62-0.82) and 90 days (incidence rate ratio: 0.77; 95% confidence interval: 0.68-0.88) prior to death. CONCLUSION: Our results demonstrated that by integrating services between acute care and home hospice care, a reduction in acute care service usage could occur.

Revisiting the Palliative Performance Scale: change in scores during disease trajectory predicts survival.

BACKGROUND: The Palliative Performance Scale (PPS) on admission is a predictor of survival. However, it is not highly discriminating for mid-range scores. 'PPS Change' between two time points considers the disease trajectory, and may improve the scale's utility. AIM: The aim of this study is to determine if a change in PPS scores between two significant time points predicts survival. DESIGN: This prospective cohort study examined 'Change on Admission', 'Change at Week 1', and 'Change at Week 2'. We followed patients until death or 6 months, whichever was earlier. Cox regressions were used to determine if the Change scores were predictors of survival, adjusting for age, sex, diagnosis category, Charlson Index, and Do-Not-Resuscitate order. SETTING/PARTICIPANTS: The sample consisted of patients referred to the palliative care service. RESULTS: All three Change scores were independent predictors of survival. The greater the change, the poorer the prognosis. At week 1, when compared to 'PPS Change ≤ 10%', 'Change 11% -30%' and 'Change > 30%' increased the hazard ratios by 1.70 (95% CI 1.10-2.63) and 3.14 (95% CI 1.77-5.59), respectively. At week 2, when compared to 'PPS Change ≤ 10%', 'Change 11% -30%' and 'Change > 30%' increased the hazard ratios by almost 3- and 8-fold, respectively. The same magnitude of Change scores also has higher hazard ratios as patients' hospitalization progressed. CONCLUSIONS: The magnitude of change in PPS score during the disease trajectory is associated with one's survival and is a potentially useful prognostication tool. Further research is needed to extend on our work.

End of life content in geriatric textbooks: what is the current situation?

BACKGROUND: Physicians caring for elderly people encounter death and dying more frequently than their colleagues in most other disciplines. Therefore we sought to examine the end-of-life content in popular geriatric textbooks and determine their usefulness in helping geriatricians manage patients at the end of their lives. METHODS: Five popular geriatric textbooks were chosen. Chapters on Alzheimer's disease, stroke, chronic heart failure, chronic obstructive pulmonary disease and lung cancer were examined because of their high mortality rates among the elderly patients. Text relevant to end-of-life care was highlighted. Two reviewers independently coded text into 10 pre specified domains and rated them for the presence of end-of-life information. Content was rated as absent, minimally helpful, or helpful. The proportion of helpful information was calculated. RESULTS: The textbook with the best end-of-life coverage contained 38% helpful information, the worst had only 15% helpful information. Minimally helpful information ranged from 24% to 50%. As much as 61% of the content in one textbook contained no helpful information at all. Of the ten domains, epidemiology, disease progression and prognostic factors were fairly well covered. Information on advance care planning, ethical issues, decision making and effects of death and dying on patient's family were generally lacking under the individual diseases though they were covered as general topics in other parts of the textbooks. All except one textbook dedicated a chapter to the care of the dying. CONCLUSION: This study showed that end-of-life content in geriatric textbooks differed significantly. Most of the textbooks lack good coverage on end-of-life care and more can be done to improve on this.