What Palliative Patients and their Carers Need at Home and what a Primary Health Care Team can Offer – First Pilot Study in Slovenia

IntroductionSpending one’s last days and dying at home is a common wish of people with a life-limiting illness. Home-based palliative care is essentially organised at the primary level to meet the needs of palliative patients and their carers. The aim of this study was to identify the characteristics of home-based palliative care, focusing on those who identify palliative patients, what their needs are and how this affects their length of life and site of death.MethodsThis retrospective cohort study analysed routinely collected notes of patients enrolled in home-based palliative care between 2015 and 2021. Palliative care was provided by a primary health care team in a predominantly rural area.ResultsThis study included 107 palliative patients, aged 71±11.4 years, 94% of whom had cancer. They were enrolled in palliative care by their primary care team or by hospital staff. The enrolment by hospital staff (3%) resulted in significantly shorter survival (p=0.008). Patients lived an average of 66 days, and 65% of patients died at home. Home-based palliative care was found to respond to both basic and complex palliative medical needs, but was weaker in addressing socio-economic, psychological or spiritual issues.ConclusionThis exemplary primary-level palliative team provided home-based palliative care that has improved over the years in terms of all the observed quality indicators: early enrolment, the proportion of patients dying at home and the ability to address needs. Specialised mobile palliative teams, hospitals and other palliative care settings complement home-based palliative care.     

Retrospective evaluation of palliative care in Romania: the perspective of the involved professionals

Objective: Palliative care at home is a new service provision in Romania. This study evaluated retrospectively, after the patient's death, the provision of care at home from the perspective of professionals directly involved in the care process. The evaluation included assessment of the role of the professional, the functioning of the team, communication with patients and family, and overall judgment. The study is part of the development of palliative care at home, by multi-disciplinary teams in Romania.

Methods: Over a period of eighteen months five teams with a total of 19 professionals, provided palliative care for 103 patients with cancer in its terminal stage. During this period 80 patients died. A questionnaire was sent to the professionals involved. All responded resulting in 181 evaluations. These evaluations are the basis for analysis. The data were analyzed using SPSS.

Results: Of the 181 cases evaluated, 63 indicated an emotional burden on the professionals. GP's and nurses reported such a burden more frequently. A lack of knowledge of how to treat a special case was reported 56 times. This was especially so when a case was judged to be different from other cases, which often included (unexpected) complications. GP's reported cases with complications more frequently than oncologists and nurses. The multidisciplinary teams functioned very satisfactorily in treating patients. Although communication with patients/families was generally judged positively, communication with patients was sometimes viewed as problematic. The overall verdict was that the care delivered to the 80 patients was positive. Most professionals reported that they would deal with the cases in the same way again.

Conclusions: The patients who received palliative care and died, were treated well according to the professionals who evaluated the care process. Improvement of palliative care services at home may be achieved by provision of additional information on (acute) complications. Since palliative care at home is a new phenomenon in Romania, professionals working closely with the patient have to learn to cope with the emotional burden certain cases may include. Eur J Gen Pract 2005;11(3):101–6.     

Determinants of primary and non-primary informal care-giving to home-based palliative care cancer care-recipients in Ontario,Canada

Informal care plays an important role in the care of care-recipients. Most of the previous studies focused on the primary caregivers and ignored the importance of non-primary caregivers. Moreover, little is known about the provision of informal care in the context of home-based palliative care. The purpose of this study was to examine the provision of primary and non-primary informal care-giving and their respective determinants. Primary caregivers assume the main responsibility for care, while non-primary caregivers are those other than the primary caregiver who provide care-giving. A longitudinal, prospective cohort design was conducted and data were drawn from two palliative care programs in Canada between November 2013 and August 2017. A total of 273 caregivers of home-based palliative care cancer care-recipients were interviewed biweekly until the care recipient died. The outcomes were the propensity and intensity of informal care-giving. Regression analysis with instrumental variables was used. About 90% of primary caregivers were spouses and children, while 53% of non-primary caregivers were others rather than spouses and children. The average number of hours of primary and non-primary informal care-giving reported for each 2-week interview period was 83 hr and 23 hr, respectively. Hours of home-based personal support workers decreased the intensity of primary care-giving and the likelihood of non-primary care-giving. Home-based nursing visits increased the propensity of non-primary care-giving. The primary care-giving and non-primary care-giving complement each other. Care recipients living alone received less primary informal care-giving. Employed primary caregivers decreased their provision of primary care-giving, but promoted the involvement of non-primary care-giving. Our study has clinical practices and policy implications. Suitable and targeted interventions are encouraged to make sure the provision of primary and non-primary care-giving, to balance the work of the primary caregivers and their care-giving responsibility, and to effectively arrange the formal home-based palliative care services.     

A Quality of Care Framework for Home-Based Medical Care

More than 6 million adults in the United States are homebound or semi-homebound and would benefit from home-based medical care (HBMC). There is currently no nationally recognized quality of care framework for home-based medical care. We sought to capture diverse stakeholder perspectives on the essential aspects of quality HBMC and create a quality of care framework for homebound adults. A qualitative analysis of semistructured interviews from purposive sampling of key HBMC stakeholders was performed. Leaders from 12 exemplar HBMC practices (clinicians and administrators), advocacy groups (American Association of Retired Persons, National Partnership for Women and Families, Kaiser Family Foundation), and representatives from 3 key professional medical societies associated with HBMC participated in phone interviews. Semistructured interviews were based on domains of quality developed by the National Quality Forum (NQF) for individuals with multiple chronic conditions. We identified 3 categories of quality HBMC: provider and practice activities; provider characteristics; and outcomes for patients, caregivers, and providers. Within these 3 categories, we identified 10 domains and 49 standards for quality HBMC. These included 3 new domains (comprehensive assessment, patient/caregiver education, and provider competency) as well as specification and adaptation of the NQF Framework for Multiple Chronic Conditions domains for HBMC. Notably, several quality domains emanating from the NQF Framework for Multiple Chronic Conditions (transitions, access, and patient/caregiver engagement) were applicable to HBMC. This quality of care framework serves as a guide for HBMC practices seeking to improve their care quality and as a starting point for health systems and payers to ensure value from HBMC practices with whom they work.     

Methodological issues in the development of a national database for primary care groups and trusts

At the National Primary Care Research and Development Centre (NPCRDC) we have constructed a national database for all primary care groups (PCGs) in England. At its core, the database links information about population socio-economic and demographic characteristics to generic health status and to the organisation, resourcing and activities of general practice. In this paper we describe and discuss the problems with linking these data, and with defining the boundaries and the local populations of PCGs, given that they have been established on the basis of administrative expediency rather than geographical coherence. We then consider the implications of these difficulties for needs assessment in primary care groups.     

Impact of multi-morbidity on quality of healthcare and its implications for health policy,research and clinical practice. A scoping review

Abstract

The simultaneous presence of multiple conditions in one patient (multi-morbidity) is a key challenge facing healthcare systems globally. It potentially threatens the coordination, continuity and safety of care. In this paper, we report the results of a scoping review examining the impact of multi-morbidity on the quality of healthcare. We used its results as a basis for a discussion of the challenges that research in this area is currently facing. In addition, we discuss its implications for health policy and clinical practice. The review identified 37 studies focussing on multi-morbidity but using conceptually different approaches. Studies focusing on ‘comorbidity’ (i.e. the ‘index disease’ approach) suggested that quality may be enhanced in the presence of synergistic conditions, and impaired by antagonistic or neutral conditions. Studies on ‘multi-morbidity’ (i.e. multiplicity of problems) and ‘morbidity burden’ (i.e. the total severity of conditions) suggested that increasing number of conditions and severity may be associated with better quality of healthcare when measured by process or intermediate outcome indicators, but with worse quality when patient-centred measures are used. However, issues related to the conceptualization and measurement of multi-morbidity (inconsistent across studies) and of healthcare quality (restricted to evaluations for each separate condition without incorporating considerations about multi-morbidity itself and its implications for management) compromised the generalizability of these observations. Until these issues are addressed and robust evidence becomes available, clinicians should apply minimally invasive and patient-centred medicine when delivering care for clinically complex patients. Health systems should focus on enhancing primary care centred coordination and continuity of care.     

The continuing care guidelines and primary and community health services

The confirmation of NHS responsibilities for continuing health care has important implications for primary and community health services. In early 1996, during the period of consultation on draft local policies and eligibility criteria, exploratory interviews were carried out with general practitioners (GPs), community nursing managers, primary care development officers and social services purchasers in three health authority areas. The interviews indicated that few GPs had responded to local consultation and were only slowly becoming aware of the implications for the provision and purchasing of primary and community health services. Moreover, local continuing care policies had apparently not addressed two issues which GPs and community nursing staff indicated were currently highly problematic: their responsibilities in relation to independent sector residential and nursing home patients; and the consequences for primary health and community nursing services of hospital discharge decisions. The need for purchasers and commissioners of health services, whether health authorities or GPs, to begin collecting information on patients' potential needs for continuing care services was widely recognised as an urgent priority.     

Differential impacts of care‐giving across three caregiver groups in Canada: end‐of‐life care,long‐term care and short‐term care

Using data from Statistic Canada's General Social Survey Cycle 21 (GSS 2007), this study explores whether differences exist in the impacts of care‐giving among three groups of caregivers providing informal care either in the caregiver's or recipient's home, or in other locations within the community: (i) those providing end‐of‐life (EOL) care (n = 471); (ii) those providing long‐term care (more than 2 years) for someone with a chronic condition or long‐term illness (n = 2722); and (iii) those providing short‐term care (less than 2 years) for someone with a chronic condition or long‐term illness (n = 2381). This study lays out the variation in sociodemographic characteristics across the three caregiver groups while also building on our understanding of the differential impacts of care‐giving through an analysis of determinants. All three groups of caregivers shared a number of sociodemographic characteristics, including being female, married, employed and living in a Census Metropolitan Area (CMA). With respect to health, EOL caregivers were found to have significantly higher levels of ‘fair or poor’ self‐assessed health than the other two groups. Overall, the findings suggest that EOL caregivers are negatively impacted by the often additional role of care‐giving, more so than both short‐term and long‐term caregivers. EOL caregivers experienced a higher proportion of negative impacts on their social and activity patterns. Furthermore, EOL caregivers incurred greater financial costs than the other two types of informal caregivers. The impacts of EOL care‐giving also negatively influence employment for caregivers when compared with the other caregiver groups. Consequently, EOL caregivers, overall, experienced greater negative impacts, including negative health outcomes, than did long‐term or short‐term caregivers. This provides the evidence for the assertion that EOL care‐giving is the most intense type of care‐giving, potentially causing the greatest caregiver burden; this is shown through the greater negative impacts experienced by the EOL caregivers when compared with the short‐term and long‐term caregivers.     

Reforms in the Portuguese health care sector: Challenges and proposals

Portugal has one of the most complete public systems worldwide. Since 1979, the Portuguese National Health Service (NHS) was developed based on the integration and complementarity between different levels of care (primary, secondary, continued, and palliative care). However, in 2009, the absence of economic growth and the increased foreign debt led the country to a severe economic slowdown, reducing the public funding and weakening the decentralized model of health care administration. During the austerity period, political attention has focused primarily on reducing health care costs and consolidating the efficiency and sustainability with no structural reform. After the postcrisis period (since 2016), the recovery of the public health system begun. Since then, some proposals have required a reform of the health sector's governance structure based on the promotion of access, quality, and efficiency. This study presents several key issues involved in the current postcrisis reform of the Portuguese NHS response structure to citizens' needs. The article also discusses the implications of this Portuguese experience based on current reforms with impact on the future of citizens' health.     

Educating Dutch General Practitioners in Dementia Advance Care Planning: A Cluster Randomized Controlled Trial

ObjectivesAdvance care planning (ACP) is seldom initiated with people with dementia (PWD) and mainly focuses on medical end-of-life decisions. We studied the effects of an educational intervention for general practitioners (GPs) aimed at initiating and optimizing ACP, with a focus on discussing medical and nonmedical preferences of future care.DesignA single-blinded cluster randomized controlled trial.Setting and participantsIn 2016, 38 Dutch GPs (all from different practices) completed the study. They recruited 140 PWD, aged ≥65 years at any stage and with any type of dementia, from their practice.MethodsIntervention group GPs were trained in ACP, including shared decision-making and role-playing exercises. Control group GPs provided usual care. The primary outcome was ACP initiation: the proportion of PWD that had at least 1 ACP conversation documented in their medical file. Key secondary outcomes were the number of medical (ie, resuscitation, hospital admission) and nonmedical (ie, activities, social contacts) preferences discussed. At the 6-month follow-up, subjects' medical records were analyzed using random effect logistics and linear models with correction for GP clustering.Results38 GP clusters (19 intervention; 19 control) included 140 PWD (intervention 73; control 67). Four PWD (2.9%) dropped out on the primary and key secondary outcomes. After 6 months, intervention group GPs initiated ACP with 35 PWD (49.3%), and control group GPs initiated ACP with 9 PWD (13.9%) [odds ratio (OR) 1.99; P = .002]. Intervention group GPs discussed 0.8 more medical [95% confidence interval (CI) 0.3, 1.3; P = .003] and 1.5 more nonmedical (95% CI 0.8, 2.3; P < .001) preferences per person with dementia than control group GPs.Conclusions and ImplicationsOur educational intervention increased ACP initiation, and the number of nonmedical and medical preferences discussed. This intervention has the potential to better align future care of PWD with their preferences but because of the short follow-up, the GPs' long-term adoption remains unknown.     

Palliative Care and the QALY Problem

Practitioners of palliative care often argue for more resources to be provided by the state in order to lessen its reliance on charitable funding and to enable the services currently provided to some of those with terminal illnesses to be provided to all who would benefit from it. However, this is hard to justify on grounds of cost-effectiveness, since it is in the nature of palliative care that the benefits it brings to its patients are of short duration. In particular, palliative care fares badly under a policy of QALY-maximisation, since procedures which prevent premature death (provided the life is of reasonable quality) or improve quality of life for those with longer life expectancy will produce more QALYs. This paper examines various responses to this problem and argues that in order to justify increased resources for palliative care its advocates must reject the ‘atomistic’ view of the value of life implicit in the QALY approach in favour of a `holistic' or `narrative' account. This, however, has implications which advocates of palliative care may be reluctant to embrace.     

The role of evaluation in the development of a service for children with life-limiting conditions in the community

Background Much of the care for children and young people with life‐limiting conditions is now delivered in the home and new services have developed to support families in this setting. It is essential to monitor and evaluate whether these services are meeting the needs of families. Aims To evaluate a new rural community palliative care service for children according to the perceptions of families and service providers, to make changes suggested by families and to re‐evaluate 1 year later. Method In 2005, 2 years after the onset of the service, 24 families were sent postal questionnaires, including the Measure of Process of Care (MPOC‐UK). Changes suggested by families were then implemented. In 2006, all of the families receiving care from the service (n = 27) were given the option of completing the questionnaire independently or with the support of an impartial researcher. Two families also completed qualitative interviews about their experience of the service with an impartial researcher. In both years, the service providers, (n = 12 and n = 15, respectively) were asked to complete the Measure of Process of Care for Service Providers (MPOC‐SP). The service providers were the clinicians providing direct care (paediatrician, community nurses, dietician, psychologist, occupational therapist, physiotherapist, and speech and language therapist). Results Seven (29%) of families completed the survey in 2005. Families rated ‘respectful and supportive care’ as the highest domain in the MPOC‐UK and ‘providing general information’ as the lowest. Particular emphasis was placed on improving provision of information during the following year. Fourteen (52%) families completed the survey in 2006. Scores increased across all domains in the second survey. The largest increase was ‘providing general information’. Conclusion The results from both of the MPOC tools were extremely useful in helping providers to identify aspects of the service in need of improvement and hence implement valued changes.     

Uptake for cervical screening by ethnicity and place-of-birth: a population-based cross-sectional study

Previous research indicates low screening uptake among South Asian women. We aimed to generate contemporary evidence of uptake by ethnicity using the screening records of eligible women resident in Manchester (n = 72613). Uptake among South Asians was lower than among other women, a difference explained by area- and practice-level confounding. A higher proportion of South Asians were recorded as 'never screened', an effect only partially explained by confounding. In practices with relatively large South Asian populations, uptake was higher among South Asians. Women born in a diverse range of overseas countries had uptake rates below 60 per cent and approximately a third of women born overseas were recorded as 'never screened'. If comprehensive coverage is to be achieved in inner city areas attention should now focus on the needs of a diverse range of ethnic minority groups other than South Asians. The routine collection of ethnicity data in primary care is also indicated.     

The Rising Frequency of Continuous Deep Sedation in the Netherlands,a Repeated Cross-Sectional Survey in 2005, 2010, and 2015

ObjectivesIn the Netherlands, the use of continuous deep sedation at the end of life has sharply increased from 8.2% of all deaths in 2005 to 12.3% in 2010 to 18.3 % in 2015. We describe its clinical characteristics in 2015 and compare it with 2010 and 2005.DesignQuestionnaire study in random samples of death reported to a central death registry.Setting and participantsA nationwide study in the Netherlands among physicians attending reported deaths.MethodsContinuous deep sedation characteristics (patient characteristics, drugs, duration, estimated shortening of life, and palliative consultation) from the Netherlands in 2015 were compared with continuous deep sedation characteristics of 2010 and 2005.ResultsThe response rate was 78% (n = 7277) in 2015, 74% (n = 6263) in 2010, and 78% (n = 6860) in 2005. The increased frequency of continuous deep sedation was notable in all patient subgroups, but mainly occurred among deaths attended by general practitioners, particularly in patients older than 80 years and patients with cancer. In 2015, continuous deep sedation was performed in 93% of the patients through administration of benzodiazepines. In 3% of the patients, the sedation lasted more than 1 week. Furthermore, 60% of the physicians reported that they had no intention to hasten death, 38% reported that they have taken hastening of death into account, and 2% reported their intention was to hasten death. For 1 in 5 patients, a palliative care expert was consulted prior to the start of sedation. These characteristics were comparable between 2015 and 2010.Conclusions and implicationsThe increase in continuous deep sedation mainly occurred in deaths attended by general practitioners, especially in older patients and patients with cancer. As there are no major shifts in demographic and epidemiologic patterns of dying, future studies should investigate possible explanations for the increase predominantly in societal developments, such as increased attention to sedation in education and society, a broader interpretation of the concept of refractoriness, and an increased need of patients and physicians to control the dying process.     

Making choices about support services: disabled adults' and older people's use of information

This paper explores how disabled adults and older people find and use information to help make choices about services. It presents findings from a qualitative longitudinal study in England. Thirty participants had support needs that fluctuated, meaning that additional services might be needed on a temporary basis; and 20 had the sudden onset of support needs resulting from an accident or rapid deterioration in health. Each disabled adult or older person was interviewed three times between 2007 and 2009, using a semi-structured topic guide. They were asked to discuss a recent choice about services, focussing, amongst other things, on their use of information. Interviews were transcribed and coded, then charted according to emergent themes. A wide range of choices and sources of information were discussed. These were dominated by health and to some extent by social care. Key findings are that information was valuable not just in weighing up different service options, but as a precondition for such choices, and that disabled adults and older people with the gradual onset of support needs and no prior knowledge about services can be disadvantaged by their lack of access to relevant information at this pre-choice stage. Timely access to information was also important, especially for people without the support of emergency or crisis management teams. Healthcare professionals were trusted sources of information but direct payment advisers appeared less so. Ensuring that practitioners are confident in their knowledge of direct payments, and have the communication skills to impart that knowledge, is essential. There may be a role also for specialist information advocates or expert lay-advisers in enabling disabled adults and older people to access and consider information about choices at relevant times.     

Exploring Occupation Roles of Hospice Family Caregivers from Māori,Chinese and Tongan Ethnic Backgrounds Living in New Zealand

A major challenge to occupational therapists working in palliative care is determining the best ways to help family caregivers who are caring for family members. The purpose of this study was to explore palliative caregiver occupations among Māori, Chinese and Tongan ethnicities. Six informants participated, one woman and one man from each ethnic group. In each of their homes, informants were asked to discuss what it was like caring for their dying family member. The occupational themes resulting from these interviews were food preparation, spirituality and family gathering. Therapists need to be aware of the differences in how people care for family members within their ethnicity. Implications are that occupational therapists can help families identify activities important to them within the main occupational themes: different types of foods and their preparations, various ways to express spirituality and how families gather together members of their extended family. Further, clinicians need to take on the role of a “not‐knowing” but curious health‐care provider in order to meet the needs of caregivers. The limitation was the small number of participants who all lived in one geographic area. Future studies should include a wider group of ethnicities. Copyright © 2014 John Wiley & Sons, Ltd.