How do Patients With Advanced Cancer and Family Caregivers Accommodate One Another in Decision-Making? Findings From a Qualitative Study in Specialist Palliative Care.

BACKGROUND: Patients with advanced cancer commonly involve family caregivers in decision-making for palliative care. However, how patients with advanced cancer and family caregivers accommodate each other in decision-making is unclear. METHODS: A qualitative study in advanced cancer was conducted with 14 patients and 19 family caregivers recruited from two hospices comprising a large regional specialist palliative care service in Ireland. Data comprised semi-structured interviews with participants. The data were analyzed using grounded theory coding procedures. RESULTS: Most patients preferred to make care decisions with their family caregiver or at least involve their family caregiver in care discussions. Patients engaged in shared decision-making because they felt they benefited from caregiver support. Patients accommodated family caregiver preferences out of concern for that person and because they trusted them. Family caregivers accommodated patient preferences because they wanted to honor the patient's wishes and felt a responsibility to protect patient autonomy when they had a close relationship with the patient. Prior conflict between the patient and family caregiver was a barrier to mutual accommodation. Although concealment was used as a mechanism to support accommodation between the patient and family caregiver, both sought to communicate openly with other family members to negate potential conflict between each other and the wider family. CONCLUSION: Patients with advanced cancer and family caregivers in specialist palliative care support one another by accommodating each other's preferences for patient care. Patients with advanced cancer and family caregivers accommodate one another in decision-making out of a sense of responsibility to one another.

The Palliative Care Needs of Patients with Multiple Sclerosis, Parkinson's Related Diseases, and Motor Neurone Disease: A Secondary Analysis of the OPTCARE Neuro Trial Data.

Background: Long-term neurological conditions include multiple sclerosis, Parkinson's-related diseases, and motor neurone disease. National and international guidelines recommend a palliative approach for advancing neurological disease, but there is little research describing and comparing the palliative care needs of these patients side by side. Objective: The aim of this study was to describe and compare the symptom burden and psychological distress of patients with multiple sclerosis, Parkinson's-related diseases, and motor neurone disease. Design: A cross-sectional secondary analysis of the OPTCARE Neuro trial data was performed. Setting/Subjects: Recruitment was from seven sites across the United Kingdom. Patients aged 18 years or older, severely affected by advanced stages of multiple sclerosis or Parkinson's-related diseases or any stage of motor neurone disease, with an unresolved symptom, and one other issue despite usual care were eligible. Measurements: Baseline demographics, Integrated Palliative care Outcome Scale (IPOS) Neuro, and Hospital Anxiety and Depression Scale (HADS) results were analyzed. Results: Data from 348 participants were analyzed. The mean IPOS Neuro-S24 score was 27, with no statistical difference found between groups (p = 0.341). The most common symptoms were poor mobility (68.5%), problems using legs (63%), and fatigue (34.8%). The HADS revealed that a quarter of participants met the criteria for a diagnosis of anxiety and depression. Conclusions: Multiple sclerosis, Parkinson's-related disease, and motor neurone disease patients who were eligible for the OPTCARE Neuro trial have unmet needs in the form of distressing physical and psychological symptoms. It is unclear how to address these needs. The answer likely lies in a collaborative approach between neurology, palliative care, psychology, and specialized allied health professionals. Future work should focus on investigating this.

Opioid toxicity after oxycodone/naloxone to oxycodone conversion: case series.

Combination preparations of oxycodone/naloxone are marketed to aid in the management of opioid induced bowel dysfunction, with caution advised in prescribing in cases of liver dysfunction.This case series demonstrates four cases of patients with normal liver function tests who developed significant opioid toxicity on conversion from combination oxycodone/naloxone to oxycodone at equivalent doses, necessitating significant dose reduction.In each case, a cause for intra-hepatic shunting such as cirrhosis, porto-systemic collaterals or thrombosis were identified, highlighting these as cautionary features when prescribing combination preparations of oxycodone/naloxone and the possible need for dose reduction if converting to oxycodone.

Place of Death for Adults Receiving Specialist Palliative Care in Their Last 3 Months of Life: Factors Associated With Preferred Place, Actual Place, and Place of Death Congruence.

Objectives: Congruence between the preferred and actual place of death is recognised as an important quality indicator in end-of-life care. However, there may be complexities about preferences that are ignored in summary congruence measures. This article examined factors associated with preferred place of death, actual place of death, and congruence for a sample of patients who had received specialist palliative care in the last three months of life in Ireland. Methods: This article analysed merged data from two previously published mortality follow-back surveys: Economic Evaluation of Palliative Care in Ireland (EEPCI); Irish component of International Access, Rights and Empowerment (IARE I). Logistic regression models examined factors associated with (a) preferences for home death versus institutional setting, (b) home death versus hospital death, and (c) congruent versus non-congruent death. Setting: Four regions with differing levels of specialist palliative care development in Ireland. Participants: Mean age 77, 50% female/male, 19% living alone, 64% main diagnosis cancer. Data collected 2011-2015, regression model sample sizes: n = 342-351. Results: Congruence between preferred and actual place of death in the raw merged dataset was 51%. Patients living alone were significantly less likely to prefer home versus institution death (OR 0.389, 95%CI 0.157-0.961), less likely to die at home (OR 0.383, 95%CI 0.274-0.536), but had no significant association with congruence. Conclusions: The findings highlight the value in examining place of death preferences as well as congruence, because preferences may be influenced by what is feasible rather than what patients would like. The analyses also underline the importance of well-resourced community-based supports, including homecare, facilitating hospital discharge, and management of complex (eg, non-cancer) conditions, to facilitate patients to die in their preferred place.

Supportive relationships between patients and family caregivers in specialist palliative care: a qualitative study of barriers and facilitators.

OBJECTIVES: Patients with advanced illness and their family caregivers can be mutually supportive. However, what facilitates and/or restricts supportive relationships between patients and family caregivers in palliative care remains unclear. We aimed to identify key barriers to and facilitators of supportive relationships between people with advanced illness and family caregivers in specialist palliative care. METHODS: A qualitative study using grounded theory methodology was conducted. Semistructured interviews were undertaken with 15 patients with advanced illness and 21 family caregivers purposively and theoretically sampled from a large regional specialist palliative care service. Verbatim transcripts were analysed in line with grounded theory coding procedures. RESULTS: Mutual support was underpinned by mutual concern and understanding. Facilitators of supportive relationships included patients and family caregivers already having a close relationship, caregivers assuming caregiving duties by choice, caregivers feeling competent in a caregiving role, patients valuing caregiver efforts, availability of respite for the caregiver and direct support from healthcare professionals to help both patients and caregivers adjust to advanced illness. Barriers to supportive relationships included absence of support from the wider family, prior mutual conflict between the patient and caregiver, caregivers feeling constrained in their caregiving role and patient and caregiver distress induced by mutual loss. CONCLUSIONS: Multiple factors at both a micro (eg, relationship based) and mesolevel (eg, assistance from services) impact patient and family caregiver ability to support one another in specialist palliative care. Supportive relationships between patients and family caregivers are mediated by feelings pertaining to both control and loss.

Mutual support between patients and family caregivers in palliative care: A qualitative study.

BACKGROUND: Patients in receipt of palliative care services are often viewed primarily as recipients of support from their family caregiver. There is a dearth of evidence in palliative care on what comprises mutual support between patients and their family caregivers in palliative care. AIM: To identify processes of mutual support between patients and family caregivers in palliative care. DESIGN: Qualitative study comprising semi-structured interviews. Data were analysed using grounded theory procedures. SETTING/PARTICIPANTS: Fifteen patients with advanced illness (cancer n = 14, neurodegenerative n = 1) and 21 family caregivers recruited from a large regional-based hospice. RESULTS: Mutual support between patients and family caregivers comprised two primary modes in which support was provided and received. Mutual support involved both patients and family caregivers providing similar types of support to each other, and which typically manifested as emotional support. However, mutual support also occurred when patients reciprocated by providing emotional support to their family caregivers to compensate for other forms of support which they felt no longer able to provide. Patients supported family caregivers by involving them in decision-making for care and both patient and family caregiver preferences were influenced by obligation to their respective other. Mutual support comprised both disclosure and concealment. Involving family caregivers in patient care decision-making was intended by patients to help family caregivers adjust to a caregiving role. CONCLUSIONS: The findings inform the development and delivery of psychosocial interventions for patients and family caregivers in palliative care aimed at facilitating supportive relations between them.

Patient and Caregiver Reciprocal Support: Impact on Decision Making in Specialist Palliative Care.

CONTEXT: Patients and informal caregivers in palliative care can reciprocate in supporting one another. However, how reciprocal support among patients and informal caregivers in palliative care impacts on their decision making for care is not well understood. OBJECTIVES: To identify how reciprocal support among patients with advanced illness and their informal caregivers in specialist palliative care impacts on their decision making for care. METHODS: Between July 2021 and May 2022, 30 qualitative interviews were conducted with 14 patient and caregiver dyads, seven nondyad caregiver participants and one nondyad patient participant (total n = 36), recruited from a large regional specialist palliative care service. Data were analyzed using Corbin and Strauss grounded theory method. RESULTS: Reciprocal support among patients and informal caregivers was underpinned by obligation and choice. Caregivers who felt obliged to care had difficulty communicating with the patient about the patient's preferences for care and their own wishes for patient care. Patients who felt obliged to accept support from their caregiver tended to minimize caregiver participation in decision making which made caregivers feel disempowered in discussions about patient care. Caregivers tended to be more involved in decision making when caregivers assumed caregiving duties by choice and when the patient did not feel restricted by their reliance on their caregiver. Open communication between patients and caregivers made patients more trusting of their caregiver. CONCLUSION: Patient and caregiver dyadic interventions in specialist palliative care involving decision making need to account for how obligation and choice manifest and function between the patient and caregiver.

Preferences of Older People With a Life-Limiting Illness: A Discrete Choice Experiment.

CONTEXT: There is limited evidence about which elements and characteristics of palliative care service provision improve the experiences of older people living with life-limiting illness. OBJECTIVES: To evaluate older patients' (≥65 years) preferences for elements of services and supports and to explore relationships between patient characteristics and the patterns of preferences. METHODS: A cross-sectional survey undertaken in Ireland and England using a Discrete Choice Experiment with people accessing specialist palliative care services. A random-effects probit model was used to estimate patient preferences. RESULTS: Of the 77 patients were interviewed, 51 participated in the Discrete Choice Experiment component of the interview (response rate = 66%). Participants prioritized support that minimized unpaid caregiver burden (P < 0.001). They also preferred ease of access to services including out-of-hours access (P < 0.001) and free care at home (P < 0.001). Quality of life was prioritized over quantity of life (<0.001). CONCLUSION: People living with a life-limiting illness value care that focuses on quality of life, ensures barrier-free access to services and provides sufficient support for relatives. In the context of limited resources and growing demand for care, this study provides evidence about the service elements palliative care delivery models should prioritize and evaluate.

Hospital transfer rates and advance care planning following a nursing home-targeted video-conference education series (Project ECHO): a prospective cohort study.

AIM: What effect does a novel education programme have on emergency hospital transfers of, and advance care planning decisions among, nursing home residents? FINDINGS: This education programme did not affect overall rates of emergency hospital transfer. It did increase advance care planning discussions, increase compliance with the results of these discussions and increase "DNR" orders among nursing home residents. MESSAGE: Novel tele-education programmes have the potential to improve advance care planning discussions in nursing homes.

Mutual support between patients and family caregivers in palliative care: A systematic review and narrative synthesis.

BACKGROUND: Patients in palliative care are usually conceptualised as recipients of support from family caregivers. Family caregivers in palliative care are typically defined as providers of support to patients. Little is known about reciprocal dimensions of support provision between patients and family caregivers in palliative care. AIM: To identify processes of mutual support between patients and family caregivers in palliative care and factors that contribute to or obstruct mutual support between patients and family caregivers in palliative care. DESIGN: Systematic review and narrative synthesis of original peer-reviewed research published between January 2000 and March 2020. DATA SOURCES: Medline, CINAHL, Embase, AMED, PsycINFO and PsycARTICLES. RESULTS: After full-text screening, 10 studies were included. We identified that patients and family caregivers in palliative care can support one another by mutually acknowledging the challenges they face, by remaining positive for one another and by jointly adapting to their changing roles. However, patients and family caregivers may not routinely communicate their distress to each other or reciprocate in distress disclosure. A lack of mutual disclosure pertaining to distress can result in conflict between patients and family caregivers. CONCLUSIONS: Few studies have focused in whole or in part, on reciprocal dimensions of support provision between patients with advancing non-curable conditions, and their family caregivers in palliative care. Further research is required to identify key domains of mutual support between patients and family caregivers in palliative care.

Associations between informal care costs, care quality, carer rewards, burden and subsequent grief: the international, access, rights and empowerment mortality follow-back study of the last 3 months of life (IARE I study).

BACKGROUND: At the end of life, formal care costs are high. Informal care (IC) costs, and their effects on outcomes, are not known. This study aimed to determine the IC costs for older adults in the last 3 months of life, and their relationships with outcomes, adjusting for care quality. METHODS: Mortality follow-back postal survey. SETTING: Palliative care services in England (London), Ireland (Dublin) and the USA (New York, San Francisco). PARTICIPANTS: Informal carers (ICrs) of decedents who had received palliative care. DATA: ICrs reported hours and activities, care quality, positive aspects and burdens of caregiving, and completed the Texas Revised Inventory of Grief (TRIG). ANALYSIS: All costs (formal, informal) were calculated by multiplying reported hours of activities by country-specific costs for that activity. IC costs used country-specific shadow prices, e.g. average hourly wages and unit costs for nursing care. Multivariable logistic regression analysis explored the association of potential explanatory variables, including IC costs and care quality, on three outcomes: positive aspects and burdens of caregiving, and subsequent grief. RESULTS: We received 767 completed surveys, 245 from London, 282 Dublin, 131 New York and 109 San Francisco. Most respondents were women (70%); average age was 60 years. On average, patients received 66-76 h per week from ICrs for 'being on call', 52-55 h for ICrs being with them, 19-21 h for personal care, 17-21 h for household tasks, 15-18 h for medical procedures and 7-10 h for appointments. Mean (SD) IC costs were as follows: USA $32,468 (28,578), England $36,170 (31,104) and Ireland $43,760 (36,930). IC costs accounted for 58% of total (formal plus informal) costs. Higher IC costs were associated with less grief and more positive perspectives of caregiving. Poor home care was associated with greater caregiver burden. CONCLUSIONS: Costs to informal carers are larger than those to formal care services for people in the last three months of life. If well supported ICrs can play a role in providing care, and this can be done without detriment to them, providing that they are helped. Improving community palliative care and informal carer support should be a focus for future investment.

Integration of palliative care in services for children with life-limiting neurodevelopmental disabilities and their families: a Delphi study.

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.

Drivers of care costs and quality in the last 3 months of life among older people receiving palliative care: A multinational mortality follow-back survey across England, Ireland and the United States.

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.

Effectiveness and cost-effectiveness of out-of-hours palliative care: a systematic review.

Background: Out-of-hours palliative care is a priority for patients, caregivers and policymakers. Approximately three quarters of the week occurs outside of typical working hours, and the need for support in care of serious and terminal illness during these times is commonplace. Evidence on relevant interventions is unclear. Aim: To review systematically the evidence on the effect of out-of-hours specialist or generalist palliative care for adults on patient and caregiver outcomes, and costs and cost-effectiveness. Methods: A systematic review of peer-reviewed and grey literature was conducted. We searched Embase, MEDLINE [Ovid], Cochrane Library, CINAHL, Allied and Complementary Medicine [Ovid], PsycINFO, Web of Science, Scopus, EconLit (Ovid), and grey literature published between 1 January 2000 and 12 th November 2019. Studies that comparatively evaluated the effect of out-of-hours specialist or generalist palliative care for adults on patient and caregiver outcomes, and on costs and cost-effectiveness were eligible, irrespective of design. Only English-language studies were eligible. Two reviewers independently examined the returned studies at each stage (title and abstract review, full-text review, and quality assessment). Results: We identified one eligible peer-reviewed study, judged as insufficient quality. Other sources returned no eligible material. The systematic review therefore included no studies. Conclusions: The importance of integrated, 24-hour care for people in line with a palliative care approach is not reflected in the literature, which lacks evidence on the effects of interventions provided outside typical working hours. Registration: PROSPERO CRD42018111041.

Pilot testing of the first version of the European Association for Palliative Care basic dataset: A mixed methods study.

BACKGROUND: Inadequate description of palliative care cancer patients in research studies often leads to results having limited generalizability. To standardize the description of the sample, the European Association for Palliative Care basic data set was developed, with 31 core demographic and disease-related variables. AIM: To pilot test the data set to check acceptability, comprehensibility and feasibility. DESIGN: International, multi-centre pilot study at nine study sites in five European countries, using mixed methods. SETTING/PARTICIPANTS: Adult cancer patients and staff in palliative care units, hospices and home care. RESULTS: In all, 191 patients (544 screened) and 190 health care personnel were included. Median time to fill in the patient form was 5 min and the health care personnel form was 7 min. Ethnicity was the most challenging item for patients and requires decisions at a national level about whether or how to include. Health care personnel found weight loss, principal diagnosis, additional diagnoses and stage of non-cancer diseases most difficult to respond to. Registration of diagnoses will be changed from International Statistical Classification of Diseases and Related Health Problems, 10th version code to a predefined list, while weight loss and stage of non-cancer diseases will be removed. The pilot study has led to rewording of items, improvement in response options and shortening of the data set to 29 items. CONCLUSION: Pilot testing of the first version of the European Association for Palliative Care basic data set confirmed that patients and health care personnel understand the questions in a consistent manner and can answer within an acceptable timeframe. The pilot testing has led to improvement, and the new version is now subject to further testing.

Strategies to address the shortcomings of commonly used advanced chronic heart failure descriptors to improve recruitment in palliative care research: A parallel mixed-methods feasibility study.

BACKGROUND: Recruitment challenges contribute to the paucity of palliative care research with advanced chronic heart failure patients. AIM: To describe the challenges and outline strategies of recruiting advanced chronic heart failure patients. DESIGN: A feasibility study using a pre-post uncontrolled design. SETTING: Advanced chronic heart failure patients were recruited at two nurse-led chronic heart failure disease management clinics in Ireland Results: Of 372 patients screened, 81 were approached, 38 were recruited (46.9% conversion to consent) and 25 completed the intervention. To identify the desired population, a modified version of the European Society of Cardiology definition was used together with modified New York Heart Association inclusion criteria to address inter-study site New York Heart Association classification subjectivity. These modifications substantially increased median monthly numbers of eligible patients approached (from 8 to 20) and median monthly numbers recruited (from 4 to 9). Analysis using a mortality risk calculator demonstrated that recruited patients had a median 1-year mortality risk of 22.7 and confirmed that the modified eligibility criteria successfully identified the population of interest. A statistically significant difference in New York Heart Association classification was found in recruited patients between study sites, but no statistically significant difference was found in selected clinical parameters between these patients. CONCLUSION: Clinically relevant modifications to the European Society of Cardiology definition and strategies to address New York Heart Association subjectivity may help to improve advanced chronic heart failure patient recruitment in clinical settings, thereby helping to address the paucity of palliative care research this population.

Understanding how a palliative-specific patient-reported outcome intervention works to facilitate patient-centred care in advanced heart failure: A qualitative study.

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.

Social and clinical determinants of preferences and their achievement at the end of life: prospective cohort study of older adults receiving palliative care in three countries.

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'.

How empowering is hospital care for older people with advanced disease? Barriers and facilitators from a cross-national ethnography in England, Ireland and the USA.

Background: patient empowerment, through which patients become self-determining agents with some control over their health and healthcare, is a common theme across health policies globally. Most care for older people is in the acute setting, but there is little evidence to inform the delivery of empowering hospital care. Objective: we aimed to explore challenges to and facilitators of empowerment among older people with advanced disease in hospital, and the impact of palliative care. Methods: we conducted an ethnography in six hospitals in England, Ireland and the USA. The ethnography involved: interviews with patients aged ≥65, informal caregivers, specialist palliative care (SPC) staff and other clinicians who cared for older adults with advanced disease, and fieldwork. Data were analysed using directed thematic analysis. Results: analysis of 91 interviews and 340 h of observational data revealed substantial challenges to empowerment: poor communication and information provision, combined with routinised and fragmented inpatient care, restricted patients' self-efficacy, self-management, choice and decision-making. Information and knowledge were often necessary for empowerment, but not sufficient: empowerment depended on patient-centredness being enacted at an organisational and staff level. SPC facilitated empowerment by prioritising patient-centred care, tailored communication and information provision, and the support of other clinicians. Conclusions: empowering older people in the acute setting requires changes throughout the health system. Facilitators of empowerment include excellent staff-patient communication, patient-centred, relational care, an organisational focus on patient experience rather than throughput, and appropriate access to SPC. Findings have relevance for many high- and middle-income countries with a growing population of older patients with advanced disease.