Background: The aim of this study was to explore expert professionals’ opinions on service provision to children under six with life-limiting neurodevelopmental disabilities (LLNDD), including the goals of care and the integration and coordination of palliative care in general and specialist services.
Methods: A Delphi design was used with three questionnaire rounds, one open-ended and two closed response rounds. Primary data collected over a six-month period from expert professionals with five years’ (or more) experience in pediatric, intellectual disability and/or palliative care settings. Ratings of agreement and prioritization were provided with agreement expressed as a median (threshold = 80%) and consensus reported as interquartile ranges. Stability was measured using non-parametric tests.
Results: Primary goals of care were achievement of best possible quality of life, effective communication and symptom management. Service integration and coordination were considered inadequate, and respondents agreed that areas of deficiency included palliative care. Improvement strategies included a single care plan, improved communication and key worker appointments.
Conclusions: The findings suggest that services do not serve this group well with deficiencies in care compounded by a lack of information on available services and sub-optimal communication between settings. Further research is needed to develop an expert-based consensus regarding the care of children with LLNDD.
Background: All countries face growing demand for palliative care services. Projections of need are essential to plan care in an era of demographic change. We aim to estimate palliative care needs in Ireland from 2016 to 2046.
Methods: Static modelling of secondary data. First, we estimate the numbers of people in Ireland who will die from a disease associated with palliative care need. We combine government statistics on cause of death (2007-2015) and projected mortality (2016-2046). Second, we combine these statistics with survey data to estimate numbers of people aged 50+ living and dying with diseases associated with palliative care need. Third, we use these projections and survey data to estimate disability burden, pain prevalence and health care utilisation among people aged 50+ living and dying with serious medical illness.
Results: In 2016, the number of people dying annually from a disease indicating palliative care need was estimated as 22,806, and the number of people not in the last year of life aged 50+ with a relevant diagnosis was estimated as 290,185. Equivalent estimates for 2046 are 40,355 and 548,105, increases of 84% and 89% respectively. These groups account disproportionately for disability burden, pain prevalence and health care use among older people, meaning that population health burdens and health care use will increase significantly in the next three decades. Conclusion: The global population is ageing, although significant differences in intensity of ageing can be seen between countries. Prevalence of palliative care need in Ireland will nearly double over 30 years, reflecting Ireland's relatively young population. People living with a serious disease outnumber those in the last year of life by approximately 12:1, necessitating implementation of integrated palliative care across the disease trajectory. Urgent steps on funding, workforce development and service provision are required to address these challenges.
Background: Care costs rise towards the end of life. International comparison of service use, costs and care experiences can inform quality and improve access.
Aim: The aim of this study was to compare health and social care costs, quality and their drivers in the last 3 months of life for older adults across countries. Null hypothesis: no difference between countries.
Design: Mortality follow-back survey. Costs were calculated from carers’ reported service use and unit costs.
Setting: Palliative care services in England (London), Ireland (Dublin) and the United States (New York, San Francisco).
Participants: Informal carers of decedents who had received palliative care participated in the study.
Results: A total of 767 questionnaires were returned: 245 in England, 282 in Ireland and 240 in the United States. Mean care costs per person with cancer/non-cancer were US$37,250/US$37,376 (the United States), US$29,065/US$29,411 (Ireland), US$15,347/US$16,631 (England) and differed significantly (F = 25.79/14.27, p < 0.000). Cost distributions differed and were most homogeneous in England. In all countries, hospital care accounted for > 80% of total care costs; community care 6%–16%, palliative care 1%–15%; 10% of decedents used ~30% of total care costs. Being a high-cost user was associated with older age (>80 years), facing financial difficulties and poor experiences of home care, but not with having cancer or multimorbidity. Palliative care services consistently had the highest satisfaction.
Conclusion: Poverty and poor home care drove high costs, suggesting that improving community palliative care may improve care value, especially as palliative care expenditure was low. Major diagnostic variables were not cost drivers. Care costs in the United States were high and highly variable, suggesting that high-cost low-value care may be prevalent.
BACKGROUND: Although the provision of palliative care (PC) is fundamental to the role of the physician, little research has assessed the competence of trainee and experienced physicians in PC.
AIM: To describe the development of a competence questionnaire and assess the level of competence of medical doctors in Ireland to provide PC to individuals with life-limiting conditions and their families.
DESIGN: A survey-based cohort study was employed using a questionnaire based on the Palliative Care Competence Framework, developed specifically for this study.
SETTING: The sample was accessed via the Royal College of Physicians of Ireland. All specialties in adult medical care and direct patient contact were included.
RESULTS: A pilot study demonstrated comprehensiveness and ensured face validity. In the main study, all subscales showed internal reliability and evidence of a normal distribution. Strong correlation was noted between knowledge and behavior while moderate correlations were noted between attitudes and behavior and attitudes and knowledge, respectively. As expected, palliative-trained participants scored significantly higher in attitudes, behavior, and knowledge.
CONCLUSIONS: The study provides baseline data on the level of competence of PC of doctors working in Ireland. The study also offers a novel assessment tool that has the potential to be used for future research.
BACKGROUND: Palliative care needs of patients with chronic heart failure are poorly recognised. Policy makers advise a patient-centred approach to holistically assess patients' needs and care goals. Patient-reported outcome measures are proposed to facilitate patient-centred care.
AIM: To explore whether and how a palliative care-specific patient-reported outcome intervention involving the Integrated Palliative care Outcome Scale influences patients' experience of patient-centred care in nurse-led chronic heart failure disease management clinics.
DESIGN: A feasibility study using a parallel mixed-methods embedded design was undertaken. The qualitative component which examined patients and nurses experience of the intervention is reported here. Semi-structured interviews were conducted and analysed using framework analysis.
SETTING/PARTICIPANTS: Eligible patients attended nurse-led chronic heart failure disease management clinics in two tertiary referral centres in Ireland with New York Heart Association functional class II-IV. Nurses who led these clinics were eligible for inclusion.
RESULTS: In all, 18 patients and all 4 nurses involved in the nurse-led clinics were interviewed. Three key themes were identified: identification of unmet needs, holistic assessment and patient empowerment. The intervention impacted on processes of care by enabling a shared understanding of patients' symptoms and concerns, facilitating patient-nurse communication by focusing on these unmet needs and empowering patients to become more involved in clinical discussions.
CONCLUSION: This Integrated Palliative care Outcome Scale-based intervention empowered patients to become more engaged in the clinical consultation and to highlight their unmet needs. This study adds to the evidence for the mechanism of action of patient-reported outcome measures to improve patient-centred care and will help inform outcome selection for future patient-reported outcome measure research.
Background: Achieving choice is proposed as a quality marker. But little is known about what influences preferences especially among older adults. We aimed to determine and compare, across three countries, factors associated with preferences for place of death and treatment, and actual site of death.
Methods: We recruited adults aged =65-years from hospital-based multiprofessional palliative care services in London, Dublin, New York, and followed them for >17 months. All services offered consultation on hospital wards, support for existing clinical teams, outpatient services and received funding from their National Health Service and/or relevant Insurance reimbursements. The New York service additionally had 10 inpatient beds. All worked with and referred patients to local hospices. Face-to-face interviews recorded most and least preferred place of death, treatment goal priorities, demographic and clinical information using validated questionnaires. Multivariable and multilevel analyses assessed associated factors.
Results: One hundred and thirty eight older adults (64 London, 59 Dublin, 15 New York) were recruited, 110 died during follow-up. Home was the most preferred place of death (77/138, 56%) followed by inpatient palliative care/hospice units (22%). Hospital was least preferred (35/138, 25%), followed by nursing home (20%) and home (16%); hospice/palliative care unit was rarely least preferred (4%). Most respondents prioritised improving quality of life, either alone (54%), or equal with life extension (39%); few (3%) chose only life extension. There were no significant differences between countries. Main associates with home preference were: cancer diagnosis (OR 3.72, 95% CI 1.40–9.90) and living with someone (OR 2.19, 1.33–3.62). Adults with non-cancer diagnoses were more likely to prefer palliative care units (OR 2.39, 1.14–5.03). Conversely, functional independence (OR 1.05, 1.04–1.06) and valuing quality of life (OR 3.11, 2.89–3.36) were associated with dying at home. There was a mismatch between preferences and achievements – of 85 people who preferred home or a palliative care unit, 19 (25%) achieved their first preference.
Conclusion: Although home is the most common first preference, it is polarising and for 16% it is the least preferred. Inpatient palliative care unit emerges as the second most preferred place, is rarely least preferred, and yet was often not achieved for those who wanted to die there. Factors affecting stated preferences and met preferences differ. Available services, notably community support and palliative care units, require expansion. Contrasting actual place of death with capacity for meeting patient and family needs may be a better quality indicator than simply ‘achieved preferences’.