Current estimates suggest that approximately 75% of people approaching the end-of-life may benefit from palliative care. The growing numbers of older people and increasing prevalence of chronic ...illness in many countries mean that more people may benefit from palliative care in the future, but this has not been quantified. The present study aims to estimate future population palliative care need in two high-income countries.
We used mortality statistics for England and Wales from 2006 to 2014. Building on previous diagnosis-based approaches, we calculated age- and sex-specific proportions of deaths from defined chronic progressive illnesses to estimate the prevalence of palliative care need in the population. We calculated annual change over the 9-year period. Using explicit assumptions about change in disease prevalence over time, and official mortality forecasts, we modelled palliative care need up to 2040. We also undertook separate projections for dementia, cancer and organ failure.
By 2040, annual deaths in England and Wales are projected to rise by 25.4% (from 501,424 in 2014 to 628,659). If age- and sex-specific proportions with palliative care needs remain the same as in 2014, the number of people requiring palliative care will grow by 25.0% (from 375,398 to 469,305 people/year). However, if the upward trend observed from 2006 to 2014 continues, the increase will be of 42.4% (161,842 more people/year, total 537,240). In addition, disease-specific projections show that dementia (increase from 59,199 to 219,409 deaths/year by 2040) and cancer (increase from 143,638 to 208,636 deaths by 2040) will be the main drivers of increased need.
If recent mortality trends continue, 160,000 more people in England and Wales will need palliative care by 2040. Healthcare systems must now start to adapt to the age-related growth in deaths from chronic illness, by focusing on integration and boosting of palliative care across health and social care disciplines. Countries with similar demographic and disease changes will likely experience comparable rises in need.
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DOBA, IZUM, KILJ, NUK, PILJ, PNG, SAZU, SIK, UILJ, UKNU, UL, UM, UPUK
Abstract Objectives To determine the relative influence of different factors on place of death in patients with cancer. Data sources Four electronic databases—Medline (1966-2004), PsycINFO ...(1972-2004), CINAHL (1982-2004), and ASSIA (1987-2004); previous contacts with key experts; hand search of six relevant journals. Review methods We generated a conceptual model, against which studies were analysed. Included studies had original data on risk factors for place of death among patients, > 80% of whom had cancer. Strength of evidence was assigned according to the quantity and quality of studies and consistency of findings. Odds ratios for home death were plotted for factors with high strength evidence. Results 58 studies were included, with over 1.5 million patients from 13 countries. There was high strength evidence for the effect of 17 factors on place of death, of which six were strongly associated with home death: patients' low functional status (odds ratios range 2.29-11.1), their preferences (2.19-8.38), home care (1.37-5.1) and its intensity (1.06-8.65), living with relatives (1.78-7.85), and extended family support (2.28-5.47). The risk factors covered all groups of the model: related to illness, the individual, and the environment (healthcare input and social support), the latter found to be the most important. Conclusions The ne of factors that influence where patients with cancer die is complicated. Future policies and clinical practice should focus on ways of empowering families and public education, as well as intensifying home care, risk assessment, and training practitioners in end of life care.
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BFBNIB, CMK, NMLJ, NUK, PNG, SAZU, UL, UM, UPUK
Cancer end-of-life care (EoLC) policies assume people want to die at home. We aimed to examine variations in preferences for place of death cross-nationally.
A telephone survey of a random sample of ...individuals aged ≥16 in England, Flanders, Germany, Italy, the Netherlands, Portugal and Spain. We determined where people would prefer to die if they had a serious illness such as advanced cancer, facilitating circumstances, personal values and experiences of illness, death and dying.
Of 9344 participants, between 51% (95% CI: 48% to 54%) in Portugal and 84% (95% CI: 82% to 86%) in the Netherlands would prefer to die at home. Cross-national analysis found there to be an influence of circumstances and values but not of experiences of illness, death and dying. Four factors were associated with a preference for home death in more than one country: younger age up to 70+ (Germany, the Netherlands, Portugal, Spain), increased importance of dying in the preferred place (England, Germany, Portugal, Spain), prioritizing keeping a positive attitude (Germany, Spain) and wanting to involve family in decisions if incapable (Flanders, Portugal).
At least two-thirds of people prefer a home death in all but one country studied. The strong association with personal values suggests keeping home care at the heart of cancer EoLC.
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GEOZS, IJS, IMTLJ, KILJ, KISLJ, NLZOH, NUK, OILJ, PNG, SAZU, SBCE, SBJE, UILJ, UL, UM, UPCLJ, UPUK, ZAGLJ, ZRSKP
Informal carers in cancer and palliative care are known to have high needs and psychological morbidity, yet a literature review identified few targeted interventions. This systematic review of ...interventions for carers of patients using home cancer and palliative care services searched Medline, CancerLit, PsycInfo and Cinahl databases. The terms used were carer(s), caregiver(s), palliative and cancer. Papers that reported interventions for adults actively providing informal care for noninstitutionalized cancer and palliative care patients were reviewed. Twenty-two interventions were identified, comprising home nursing care (four), respite services (three), social networks and activity enhancement (two), problem solving and education (three) and group work (10). Of these, nine were delivered solely to carers (i.e., were targeted services). Only six of the carers' interventions had been evaluated, two of these had used a randomized control trial (RCT; grades IB), three employed a single group methodology (two prospective grades IIIC and one retrospective grade IIIC) and one was evaluated using facilitator feedback.
There was a lack of outcome evaluation designs, small sample sizes and a reliance on intervention descriptions and formative evaluations. Methodological challenges may mean alternatives to ‘pure’ RCTs should be considered. The current evidence contributes more to understanding feasibility and acceptability than to effectiveness. Practitioners and evaluators must prioritize the further development of intervention studies.
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NUK, OILJ, SAZU, UKNU, UL, UM, UPUK
Involving adults lacking capacity (ALC) in research on end of life care (EoLC) or serious illness is important, but often omitted. We aimed to develop evidence-based guidance on how best to include ...individuals with impaired capacity nearing the end of life in research, by identifying the challenges and solutions for processes of consent across the capacity spectrum.
Methods Of Researching End of Life Care_Capacity (MORECare_C) furthers the MORECare statement on research evaluating EoLC. We used simultaneous methods of systematic review and transparent expert consultation (TEC). The systematic review involved four electronic databases searches. The eligibility criteria identified studies involving adults with serious illness and impaired capacity, and methods for recruitment in research, implementing the research methods, and exploring public attitudes. The TEC involved stakeholder consultation to discuss and generate recommendations, and a Delphi survey and an expert 'think-tank' to explore consensus. We narratively synthesised the literature mapping processes of consent with recruitment outcomes, solutions, and challenges. We explored recommendation consensus using descriptive statistics. Synthesis of all the findings informed the guidance statement.
Of the 5539 articles identified, 91 met eligibility. The studies encompassed people with dementia (27%) and in palliative care (18%). Seventy-five percent used observational designs. Studies on research methods (37 studies) focused on processes of proxy decision-making, advance consent, and deferred consent. Studies implementing research methods (30 studies) demonstrated the role of family members as both proxy decision-makers and supporting decision-making for the person with impaired capacity. The TEC involved 43 participants who generated 29 recommendations, with consensus that indicated. Key areas were the timeliness of the consent process and maximising an individual's decisional capacity. The think-tank (n = 19) refined equivocal recommendations including supporting proxy decision-makers, training practitioners, and incorporating legislative frameworks.
The MORECare_C statement details 20 solutions to recruit ALC nearing the EoL in research. The statement provides much needed guidance to enrol individuals with serious illness in research. Key is involving family members early and designing study procedures to accommodate variable and changeable levels of capacity. The statement demonstrates the ethical imperative and processes of recruiting adults across the capacity spectrum in varying populations and settings.
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DOBA, IZUM, KILJ, NUK, PILJ, PNG, SAZU, SIK, UILJ, UKNU, UL, UM, UPUK
Summary Background There is a plethora of assessment tools available to measure breathlessness, the most common and disabling symptom of advanced cardio-respiratory disease. The aim of this ...systematic review was to identify all measures available via standard search techniques and review their usefulness for patients with advanced disease. Methods A systematic literature search was performed in Medline. All studies focusing on the development or evaluation of tools for measuring breathlessness in chronic respiratory disease, cardiac disease, cancer, or MND were identified. Their characteristics with regard to validity, reliability, appropriateness and responsiveness to change were described. The tools were then examined for their usefulness in measuring significant aspects of breathlessness in advanced disease. Results Thirty-five tools were initially identified, two were excluded. Twenty-nine were multidimensional of which 11 were breathlessness-specific and 18 disease-specific. Four tools were unidimensional, measuring the severity of breathlessness. The majority of disease-specific scales were validated for chronic obstructive pulmonary disease (COPD), few were applicable in other conditions. No one tool assessed all the dimensions of this complex symptom, which affects the psychology and social functioning of the affected individual and their family—most focused on physical activity. Conclusion As yet there is no one scale that can accurately reflect the far-reaching effects of breathlessness on the patient with advanced disease and their family. Therefore, at present, we would recommend combining a unidimensional scale (e.g. VAS) with a disease-specific scale (where available) or a multidimensional scale in conjunction with other methods (such as qualitative techniques) to gauge psychosocial and carer distress for the assessment of breathlessness in advanced disease.
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GEOZS, IJS, IMTLJ, KILJ, KISLJ, NLZOH, NUK, OILJ, PNG, SAZU, SBCE, SBJE, UILJ, UL, UM, UPUK, ZAGLJ, ZRSKP
The aim of the study was to explore acute care utilisation towards end of life by and the place of death for patients with serious mental disorders and to demonstrate any inequalities in end-of-life ...care faced by this patient group.
This is a retrospective cohort study using linked, routinely collected data.
This study used linked data extracted from mental health records, Hospital Episode Statistics and mortality data. Adult cases (≥18 years old) were included if they had a serious mental disorder and died between 2007 and 2015. Multiple imputation was used to manage missing data, and generalised linear models were used to assess multiple adjusted associations between sociodemographic and clinical explanatory variables and acute service use at the end of life and in-hospital deaths.
A cohort of 1350 adults was analysed. More than half visited the accident and emergency (A&E) department in the last 90 days of life, and a third had a burdensome transition (multiple hospital admissions in the last 90 days of life or at least one in the last three days); the median number of days spent in the hospital was 4 (range: 0–86). Having more comorbidities was a strong correlate of more A&E visits (adjusted odds ratio OR = 1.03 95% confidence interval = 1.02–1.04), burdensome transitions (adjusted OR = 1.06 1.04–1.08) and days spent in the hospital (adjusted OR = 1.04 1.03–1.05). Having a diagnosis of schizophrenia spectrum disorder, compared with other serious mental disorder diagnoses, was associated with fewer A&E visits (adjusted OR = 0.78 0.71–0.88) and fewer days in the hospital (adjusted OR = 0.77 0.66–0.89). Younger age was associated with more A&E visits (adjusted OR = 1.28 1.07–1.53) and fewer days spent in the hospital (adjusted OR = 0.70 0.52–0.95). Hospital deaths were high (51%), and in a fully adjusted model, they were associated with having more comorbidities (adjusted OR = 1.02 1.01–1.03) and accessing acute care at the end of life (including more A&E visits; adjusted OR = 1.07 1.05–1.10), burdensome transitions (adjusted OR = 1.53 1.37–1.71) and days spent in the hospital (adjusted OR = 2.05 1.70–247).
People with comorbidities are more likely to use more burdensome acute health care at the end of life and are more likely to die in the hospital. Hospital deaths could be reduced, and end-of-life care could be improved by targeting patients with comorbidities and who are accessing more acute healthcare services.
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GEOZS, IJS, IMTLJ, KILJ, KISLJ, NLZOH, NUK, OILJ, PNG, SAZU, SBCE, SBJE, UILJ, UL, UM, UPUK, ZAGLJ, ZRSKP
The Palliative Care Outcome Scale (POS) and the Support Team Assessment Schedule (STAS) are outcome measures assessing quality of care in palliative care patients. This review aims to appraise their ...use in clinical care and research. Five electronic databases were searched (February 2010) for original papers describing the validation or use of POS and/or STAS. Of the 83 papers included, 43 studies were on POS, 39 on STAS and one study using both. Eight STAS studies validated the original version, four an adaptation; 20 studies applied the STAS in another culture and 19 in other languages. POS papers reported included: 14 adapted POS versions, 12 translations of the POS and 15 studies of use in different cultures. Both measures have been used in cancer, HIV/AIDS and in mixed groups. POS has also been applied in neurological, kidney, pulmonary and heart disease. Both tools were used in different areas such as the evaluation of care or interventions, description of symptom prevalence and implementation of outcome measures in clinical practice. Overall, they seem to be well accepted tools for outcome measurement in palliative care, both in clinical care and research.
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NUK, OILJ, SAZU, UKNU, UL, UM, UPUK
Patient preferences are integral to person-centred care, but preference stability is poorly understood in older people, who may experience fluctuant illness trajectories with episodes of acute ...illness. We aimed to describe, and explore influences on the stability of care preferences in frail older people following recent acute illness.
Mixed-methods prospective cohort study with dominant qualitative component, parallel data collection and six-month follow up.
age ≥ 65, Rockwood Clinical Frailty score ≥ 5, recent acute illness requiring acute assessment/hospitalisation. Participants rated the importance of six preferences (to extend life, improve quality of life, remain independent, be comfortable, support 'those close to me', and stay out of hospital) at baseline, 12 and 24 weeks using a 0-4 scale, and ranked the most important. A maximum-variation sub-sample additionally contributed serial in-depth qualitative interviews. We described preference stability using frequencies and proportions, and undertook thematic analysis to explore influences on preference stability.
90/192 (45%) of potential participants consented. 82/90 (91%) answered the baseline questionnaire; median age 84, 63% female. Seventeen undertook qualitative interviews. Most participants consistently rated five of the six preferences as important (range 68-89%). 'Extend life' was rated important by fewer participants (32-43%). Importance ratings were stable in 61-86% of cases. The preference ranked most important was unstable in 82% of participants. Preference stability was supported by five influences: the presence of family support; both positive or negative care experiences; preferences being concordant with underlying values; where there was slowness of recovery from illness; and when preferences linked to long term goals. Preference change was related to changes in health awareness, or life events; if preferences were specific to a particular context, or multiple concurrent preferences existed, these were also more liable to change.
Preferences were largely stable following acute illness. Stability was reinforced by care experiences and the presence of family support. Where preferences were unstable, this usually related to changing health awareness. Consideration of these influences during preference elicitation or advance care planning will support delivery of responsive care to meet preferences. Obtaining longer-term data across diverse ethnic groups is needed in future research.
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