Specialist Palliative Home Care Research Articles

Using normalization process theory to evaluate the use of patient-centred outcome measures in specialist palliative home care—a qualitative interview study

BackgroundStandardised use of patient-centred outcome measures (PCOMs) improves aspects of quality of care. Normalization Process Theory (NPT) considers the social (inter-)actions of implementation processes operationalised through four constructs: coherence-building, cognitive participation, collective action and reflexive monitoring. The aim of the study was to identify barriers and enablers for the successful use of PCOMs in specialist palliative home care (SPHC) using NPT, to collect clinically meaningful and reliable data to improve patient outcomes.MethodsQualitative study using semi-structured interviews with palliative care professionals from German SPHC teams who participated in a study using PCOMs. Data were analysed using Framework analysis, and contextualised within NPT.ResultsSeventeen interviews across five teams were conducted. Some teams already had an understanding of what PCOMs are and how to use them, based on previous experience. In other teams, this understanding developed through the perception of the benefits (coherence). Participation and engagement depended on individuals and was decisive for coherence-building. The attitude of the management level also played a major role (cognitive participation). Integration of PCOMs into everyday clinical practice varied and depended on the manifestation of the first two constructs and other already established routines (collective action). In the context of appraisal, both positive (e.g. focus on patient) and negative aspects (e.g. additional work) of using PCOMs were mentioned (reflexive monitoring).ConclusionsAlthough benefits of using PCOMs were partly recognised, not all teams continued standardised use. Here, not only the social (inter-)actions, but also the influence of the context (working environment) were decisive. Future implementation strategies should consider integrating PCOMs in existing electronic patient records, education sessions supporting coherence-building, internal facilitators/local champions, and ensuring frequent data analyses as it is beneficial and increases the readiness of using PCOMs.

The responsibility to quench thirst by providing drinks when a relative is dying spouses’ experience in specialist palliative home care

BackgroundThirst and dry mouth are common symptoms in terminally ill patients. It is known that family members usually request drips for their dying relative. Few studies have focused on thirst in terminally ill patients and their spouses’ experience of this, leading to a knowledge gap in this area.AimThe aim of this study was to explore spouses’ experiences of observing and managing thirst in a dying relative admitted to specialist palliative home care.MethodsA qualitative interview study with an inductive approach was conducted. Eighteen spouses caring for their husband or wife admitted to specialist palliative home care in different hospitals in Sweden were interviewed. The interviews were transcribed verbatim and analysed with a reflexive thematic analysis.ResultsThree main themes emerged regarding spouses’ experiences of patients’ thirst: Knowledge and views of thirst; Control of fluid intake provides vital information; and Taking charge of their drinking is a life and death responsibility.ConclusionsSpouses experience a responsibility to serve the dying person with fluids so that they will not get thirsty. It is so obvious and commonplace to them. To be able to fulfil this responsibility, they need to keep track of the patient’s fluid intake and know what quenches thirst. There is a need for research in this area to assist carers and patients in identifying which drinks best quench the patient’s thirst. Interventions are also needed to help provide/make available knowledge on suitable thirst-quenching drinks.

Symptom and problem clusters in German specialist palliative home care - a factor analysis of non-oncological and oncological patients’ symptom burden

BackgroundSpecialist palliative home care (SPHC) aims to maintain and improve patients’ quality of life in the community setting. Symptom burden may differ between oncological and non-oncological patients. However, little is known about diagnosis-related differences of SPHC patients. This study aims to describe the prevalence of physical symptom burden and psychosocial problems of adult patients in SPHC, and to evaluate diagnosis-related symptom clusters.MethodsSecondary analysis of data from a prospective, cross-sectional, multi-centre study on complexity of patients, registered at the German Register for Clinical Studies (DRKS trial registration number: DRKS00020517, 12/10/2020). Descriptive statistics on physical symptom burden and psychosocial problems at the beginning of care episodes. Exploratory and confirmatory factor analyses to identify symptom and problem clusters.ResultsSeven hundred seventy-eight episodes from nine SPHC teams were included, average age was 75 years, mean duration of episode 18.6 days (SD 19.4). 212/778 (27.2%) had a non-oncological diagnosis. Main burden in non-oncological episodes was due to poor mobility (194/211; 91.9%) with significant diagnosis-related differences (χ² = 8.145, df = 1, p = .004; oncological: 472/562; 84.0%), and due to weakness (522/565; 92.4%) in oncological episodes. Two symptom clusters (psychosocial and physical) for non-oncological and three clusters (psychosocial, physical and communicational/practical) for oncological groups were identified. More patients in the non-oncological group compared to the oncological group showed at least one symptom cluster (83/212; 39.2% vs. 172/566; 30.4%).ConclusionPatients with non-oncological diseases had shorter episode durations and were more affected by symptom clusters, whereas patients with oncological diseases showed an additional communicational/practical cluster. Our findings indicate the high relevance of care planning as an important part of SPHC to facilitate anticipatory symptom control in both groups.

Cost-effectiveness of a specialist palliative care nurse-patient consultation followed by an interprofessional case conference for patients with non-oncological palliative care needs: results of the KOPAL trial.

Worldwide, progressive chronic, non-malignant diseases are highly prevalent. Especially with increasing age, they are characterised by high hospitalisation rates and high healthcare costs. Improved interprofessional collaboration between general practitioners (GPs) and specialist palliative home care (SPHC) teams might reduce hospitalisation while improving symptoms and quality of life, or preventing them from deterioration. The aim of this study was to examine the cost-effectiveness of a newly developed intervention in patients with advanced chronic, non-malignant diseases consisting of a structured palliative care nurse-patient consultation followed by an interprofessional telephone case conference. The analysis was based on data from 172 participants of the KOPAL multi-centre, cluster randomised controlled trial. Patients with advanced congestive heart failure (CHF), chronic obstructive pulmonary disease (COPD), or dementia were randomised into intervention group (IG) and control group (CG, usual care). Cost-effectiveness was examined over 48 weeks from a societal and healthcare payer's perspective. Effects were quantified as quality-adjusted life years (QALYs, EQ-5D-5L). Incremental costeffectiveness ratios were calculated and cost-effectiveness acceptability curves were constructed. Baseline imbalances in costs and effects could be observed between IG and CG. After adjusting for these imbalances and compared to the CG, mean costs in the IG were non-significantly higher from a societal and lower from a payer's perspective. On the effect side, the IG had marginally lower mean QALYs. The results were characterized by high statistical uncertainty, indicated by large confidence intervals for the cost and effect differences between groups and probabilities of cost-effectiveness between 18% and 65%, depending on the perspective and willingness-to-pay. Based on the results of this study, the cost-effectiveness of the KOPAL intervention was uncertain. The results highlighted (methodological) challenges of economic evaluations in patients with chronic, non-malignant diseases related to sample size, heterogeneity of participants, and the way the intervention effectiveness is typically captured in economic evaluations.

Structural characteristics and contractual terms of specialist palliative homecare in Germany

BackgroundMulti-professional specialist palliative homecare (SPHC) teams care for palliative patients with complex symptoms. In Germany, the SPHC directive regulates care provision, but model contracts for each federal state are heterogeneous regarding staff requirements, cooperation with other healthcare providers, and financial reimbursement. The structural characteristics of SPHC teams also vary.AimWe provide a structured overview of the existing model contracts, as well as a nationwide assessment of SPHC teams and their structural characteristics. Furthermore, we explore whether these characteristics serve to find specifc patterns of SPHC team models, based on empirical data.MethodsThis study is part of the multi-methods research project “SAVOIR”, funded by the German Innovations Fund. Most model contracts are publicly available.Structural characteristics (e.g. number, professions, and affiliations of team members, and external cooperation) were assessed via an online database (“Wegweiser Hospiz- und Palliativversorgung”) based on voluntary information obtained from SPHC teams. All the data were updated by phone during the assessment process.Data were descriptively analysed regarding staff, cooperation requirements, and reimbursement schemes, while latent class analysis (LCA) was used to identify structural team models.ResultsModel contracts have heterogeneous contract partners and terms related to staff requirements (number and qualifications) and cooperation with other services. Fourteen reimbursement schemes were available, all combining different payment models. Of the 283 SPHC teams, 196 provided structural characteristics. Teams reported between one and 298 members (mean: 30.3, median: 18), mainly nurses and physicians, while 37.8% had a psychosocial professional as a team member. Most teams were composed of nurses and physicians employed in different settings; for example, staff was employed by the team, in private practices/nursing services, or in hospitals. Latent class analysis identified four structural team models, based on the team size, team members’ affiliation, and care organisation.ConclusionBoth the contractual terms and teams’ structural characteristics vary substantially, and this must be considered when analysing patient data from SPHC. The identified patterns of team models can form a starting point from which to analyse different forms of care provision and their impact on care quality.

Nurses’ challenges when supporting the family of patients with ALS in specialized palliative home care: A qualitative study

ABSTRACT Purpose Being a family member to someone who has amyotrophic lateral sclerosis (ALS) is demanding and often requires sacrificing a lot. Family members can experience fatigue, anxiety, guilt and need support. The aim was to explore registered nurses’ (RNs’) experiences of providing support to the families of patients with ALS within specialized palliative home care (SPHC). Methods A qualitative explorative design. Interviews were conducted with RNs (n = 11) from five SPHCs in Sweden and analysed using qualitative content analysis. Results The results emerged in the following categories:”To support in an increasingly difficult everyday life”, based on the sub-categories: “Creating a trusting relationship”, “Balancing between the needs of patients and their families”, and “Sharing knowledge about dying to the families”;”To support in emotionally challenging situations”, based on the sub-categories: “Harbouring family members’ difficult feelings”, “Providing support even though the situation is unpleasant” and “Being able to give support by receiving confirmation and support from others”. Conclusions RNs working in SPHC have an important role in providing support in several ways to the families of patients with ALS, through facilitating their everyday life and giving emotional support when needed, based on the needs of both patients and the families.

Accessibility to specialist palliative care services in Germany: a geographical network analysis.

The need for palliative care will increase over the next years because of the rise in deaths from chronic illness and demographic changes. The provision of specialist palliative care (SPC) in Germany (palliative care units (PCU), specialist palliative home care(SPHC) teams and palliative care advisory(PCA) teams) has been expanded in recent years. Despite the increasing availability, there is still insufficient coverage with long travel times. The aim was to describe the spatial distribution of SPC services in Germany, to calculate the potential accessibility of facilities and to assess potential spatial under-provision. Retrospective cross-sectional study with regional analysis of SPC services in Germany. Addresses of SPC services registered online were geocoded, accessibility and network analyses were conducted, and proportion of the population living up to 60minutes driving time were calculated. A total of 673 facilities were included. Their distribution is heterogeneous with every fourth of the 401 districts (110/401; 27.4%) lacking a SPC service. In half of the area of Germany the existing PCU and SPHC teams are within reach of 30minutes, with nearly 90% of the population living there. Hospitals providing PCA teams can be reached within 30minutes in 17% of the total area with provision for 43% of the population. A high coverage of SPHC teams and PCU indicates a good spatial distribution in Germany but no complete adequate provision of SPC services, especially for PCA teams. There is a persistent need for further implementation of hospital PCA teams.

Inanspruchnahme von Palliativversorgung am Lebensende in Deutschland: zeitlicher Verlauf (2016–2019) und regionale Variabilität

ZusammenfassungHintergrundIn Deutschland findet Palliativversorgung (PV) ambulant, stationär, allgemein und spezialisiert statt. Da bisher wenig bekannt ist über die zeitliche Entwicklung und regionale Unterschiede in den Versorgungsformen, war es Ziel der vorliegenden Studie, dies zu untersuchen.MethodenRetrospektive Routinedatenstudie mit 417.405 in den Jahren 2016–2019 verstorbenen BARMER-Versicherten. Anhand mindestens einmalig abgerechneter Leistung im letzten Lebensjahr ermittelten wir die Inanspruchnahmeraten allgemeiner ambulanter Palliativversorgung (AAPV), besonders qualifizierter und koordinierter palliativmedizinischer Versorgung (BQKPmV), spezialisierter ambulanter Palliativversorgung (SAPV), stationärer Palliativ- und Hospizversorgung. Wir berechneten Zeittrends, regionale Unterschiede und kontrollierten für versorgungsbedarfsbezogene Patientenmerkmale und zugangsbezogene Wohnkreismerkmale.ErgebnisseVon 2016 bis 2019 stieg die Inanspruchnahme von PV insgesamt von 33,8 % auf 36,2 %, SAPV von 13,3 % auf 16,0 % (max.: Rheinland-Pfalz), stationärer PV von 8,9 % auf 9,9 % (max.: Thüringen); AAPV sank von 25,8 % auf 23,9 % (max.: Brandenburg); BQKPmV kam 2019 auf 4,4 % (max.: Saarland); Hospiz blieb konstant bei 3,4 %. Die regionale Variabilität der Inanspruchnahmeraten nahm bei AAPV und stationärer PV von 2016 auf 2019 zu, bei SAPV und Hospiz ab, blieb insgesamt jedoch hoch. Die regionalen Unterschiede zeigten sich auch nach Adjustierung.DiskussionZunehmend mehr SAPV, weniger AAPV und hohe, nicht durch bedarfs‑/​zugangsbezogene Merkmale erklärbare regionale Variabilität sprechen dafür, dass sich der Einsatz palliativer Versorgungsformen weniger am Bedarf als an regional verfügbaren Versorgungskapazitäten orientiert. Angesichts demografiebedingt wachsenden PV-Bedarfs und abnehmender personeller Ressourcen ist diese Entwicklung kritisch zu sehen.

Measurement equivalence of the paper-based and electronic version of the Integrated Palliative care Outcome Scale (IPOS): A randomised crossover trial

Background: The Integrated Palliative Care Outcome Scale (IPOS) validly and reliably measures symptoms and concerns of those receiving palliative care. Aim: To determine the equivalence of the paper version with an electronic version of the IPOS (eIPOS). Design: Multicentre randomised crossover trial (NCT03879668) with a within-subject comparison of the two modes (washout period 30 min). Setting/Participants: Convenience sample of specialist inpatient and palliative home care patients aged over 18 years with cancer and non-cancer conditions was recruited. Scores were compared using intraclass correlation coefficients (ICC), Bland-Altman plots and via a mixed-effects analysis of variance. Results: Fifty patients were randomised to complete paper-electronic (n = 24) and electronic-paper (n = 26) IPOS with median age 69 years (range 24–95), 56% male, 16% non-cancer. The ICCs showed very high concordance for the total score (ICC 0.99, 95% CI 0.98–1.00), lowest ICCs being observed for symptoms ‘Appetite loss’ and ‘Drowsiness’ (ICC 0.95, 95% CI 0.92–0.97). Nine of seventeen items had ICCs above 0.98, as did all subscales. No statistically significant mode, order, age, and interaction effects were observed for IPOS total score and subscales, except for ‘Communication’ (Fmode = 5.9, p = 0.019). Fifty-eight percent preferred the electronic version. In the group 75+ years, 53% preferred the paper version. Only three entries in the free-text main problems differed between the versions. Conclusion: The very high equivalence in scores and free text between the IPOS and the eIPOS demonstrates that eIPOS is feasible and reliable in an older palliative population.

Implementing ePROM in specialist palliative home care: the professionals' perspective - a mixed-methods study.

Over the last decades, patient-reported outcome measures (PROM) have been developed for a better understanding of patient needs. The Integrated Palliative Care Outcome Scale (IPOS) is an internationally recommended PROM in palliative care. The validated electronic version of IPOS (eIPOS) was implemented in four German specialist palliative home care (SPHC) teams for use in everyday clinical practice. Patients reported symptoms and concerns via eIPOS, which were transmitted directly to the electronic patient record of the respective SPHC team. The aim of the study was to describe and explore the health care professionals' (HCPs') experiences regarding acceptance and use of eIPOS in clinical practice in SPHC. The mixed-methods sequential explanatory design comprised an anonymized quantitative online survey followed by qualitative focus groups. The online survey asked in both closed and open questions for HCP's experience with eIPOS. Ambiguous results from the survey were discussed in two focus groups. Survey data were analysed with descriptive and univariable statistics, and the framework approach was used for qualitative data. In a further step, we conducted integrated analysis of quantitative and qualitative results using joint displays. All HCPs of the four SPHC teams (n = 52) were invited to participate. HCPs participating in the survey (n = 32) and the focus groups (n = 7) saw potentials for implementing ePROM in palliative home care - as far as it is technically easy to handle and can be easily integrated into clinical practice. Successful use of ePROMs is affected by the possibility of easy integration into the teams' different structures and processes and the HCPs' perceptions of potentials regarding ePROM use in SPHC. The study is registered on clinicaltrials.org (NCT03879668).

“It’s pretty much flying blind in the home care setting”: A qualitative study on the influence of home care specific circumstances on sedation in specialist palliative home care

Background: Existing data on sedation at the end of life indicate challenges in the home care setting, leading to deviations from guidelines or non-provision of sedation. Aim: As part of the “SedPall” study, we aimed to explore circumstances in specialist palliative home care, which influence the practice of sedation. Design: Semi-structured qualitative interviews (n = 59) and two focus groups (n = 4, n = 5). Recruitment took place via contact persons. We thematically analyzed the transcripts with the Framework Approach, using MAXQDA 2018.2. Setting/participants: Physicians, nurses, and other members of the multiprofessional team from 10 palliative care units and seven home care teams. Results: Participants reported home care specific circumstances that can be categorized into three interrelated topics. (1) Lack of 24/7 on-site availability, (2) active involvement of the family, (3) challenges regarding teamwork and multidisciplinarity. Participants drew different conclusions from the reported circumstances regarding the feasibility of different types of sedation at home: While some reported to generally use all types of sedation, others stated that some types of sedation are not feasible in home care, for example deep sedation until death. Most participants questioned the applicability of existing sedation guidelines in the home care setting. Conclusion: Our data indicate that sedation practices might currently follow the healthcare professional’s attitude or service policy rather than the patient’s need. To avoid hospital admission in manageable cases and ensure that home care specific best practice standards are met, existing guideline recommendations have to be adapted and supplemented by additional supporting measures specific for the home care setting.

The Impact of the SARS-CoV-2 Pandemic on the Needs of Non-Infected Patients and Their Families in Palliative Care-Interviews with Those Concerned.

During humanitarian crises, such as a pandemic, healthcare systems worldwide face unknown challenges. This study aimed to explore and describe the effect of the SARS-CoV-2 pandemic on the needs of non-infected patients and family caregivers in specialist palliative care, using qualitative, semi-structured interviews. Data were analyzed using inductive content analysis, following the framework approach. Thirty-one interviews were conducted with patients/family caregivers (15/16) in palliative care units/specialist palliative home care (21/10) from June 2020 to January 2021. Well-known needs of patients and family caregivers at the end of life remained during the pandemic. Pandemic- dependent themes were (1) implications of the risk of contagion, (2) impact of the restriction of social interactions, (3) effects on the delivery of healthcare, and (4) changes in the relative’s role as family caregiver. Restriction on visits limited family caregivers’ ability to be present in palliative care units. In specialist palliative home care, family caregivers were concerned about the balance between preserving social contacts at the end of life and preventing infection. Specialist palliative care during a pandemic needs to meet both the well-known needs at the end of life and additional needs in the pandemic context. In particular, attention should be given to the needs and burden of family caregivers, which became more multifaceted with regards to the pandemic.

Effectiveness of a specialist palliative home care nurse–patient consultation followed by an interprofessional telephone case conference compared with usual care among patients with non-oncological palliative care needs: protocol for the multicentre KOPAL cluster-randomised controlled trial

IntroductionProgressive chronic, non-malignant diseases (CNMD) like congestive heart failure (CHF), chronic obstructive pulmonary disease (COPD) and dementia are of growing relevance in primary care. Most of these patients suffer from...

Possible age-related differences in healthcare professionals’ perspectives on younger and older patients’ autonomy and decision-making in the context of sedation in specialised palliative care: exploratory secondary qualitative content and linguistic conversation analysis of interviews with healthcare professionals

BackgroundChronic illnesses and multi-morbidity can threaten competence and independence, particularly in old age. Autonomy becomes increasingly important in the context of sedation, as in this case medication leads to (further) changes of consciousness. The study aimed to identify possible age-related differences in the perspectives of healthcare professionals on patients’ autonomy, in the context of sedation in specialised palliative care.MethodSecondary analysis of interviews with healthcare professionals, analysed by qualitative content and linguistic conversation analysis. The interviews analysed span 51 healthcare professionals in specialised palliative care across 17 centres (adult inpatient and specialist palliative home care services) in Germany.ResultsThe study shows that the perspectives of healthcare professionals on patients’ autonomy differs according to the age of the patient in the context of sedation in specialised palliative care. The different perspectives may lead to different ways of treating the patients, for example a greater space of autonomy and decision-making for younger patients.ConclusionIn particular, measures that may restrict consciousness (e.g. sedation) and thus influence patients’ ability to fully exercise their autonomy and fully participate in decision-making require special attention by healthcare professionals with respect to possible influences on treatment, such as different perceptions by healthcare professionals based on the patient’s age or age-related stereotypes.Trial registrationThe study “SedPall” is registered in the German Clinical Trials Register (ID: DRKS00015047).

Intra-rater reliability and feasibility of the HexCom advanced disease complexity assessment model

AimTo study the intra-rater reliability and feasibility of the HexCom complexity assessment model by analyzing internal consistency, intra-rater reliability and response time. DesignTest–retest study with a selection of 11 clinical situations that cover the full scope of situations assessed by the HexCom model and which are responded to individually. LocationHome care, primary care, hospital and sociosanitary care. Two specialized palliative home care teams (PADES). ParticipantsA total of 20 professionals comprising 10 experts in palliative home care (PADES) and 10 professionals from general palliative care (primary care, hospital and sociosanitary care). These professionals came from the fields of family medicine (5), internal medicine (2), geriatrics (2), nursing (9), psychology (1) and social work (1). Main measurementsCronbach's alpha, weighted kappa, response time. ResultsCronbach's alpha of 0.91 for HexCom-Red and 0.87 for HexCom-Clin. Intra-rater reliability ranging from good to very good for HexCom-Red (kappa: 0.78–1) and from moderate to very good for HexCom-Clin (kappa: 0.58–0.91). Average response time of 0:57 for HexCom-Red and 3:80min for HexComClin. ConclusionsHexCom-Red and HexCom-Clin are reliable tools and feasible for use by all professionals involved in both general and specialized palliative care at different levels.

COMPANION: development of a patient-centred complexity and casemix classification for adult palliative care patients based on needs and resource use – a protocol for a cross-sectional multi-centre study

BackgroundA casemix classification based on patients’ needs can serve to better describe the patient group in palliative care and thus help to develop adequate future care structures and enable national benchmarking and quality control. However, in Germany, there is no such an evidence-based system to differentiate the complexity of patients’ needs in palliative care. Therefore, the study aims to develop a patient-oriented, nationally applicable complexity and casemix classification for adult palliative care patients in Germany.MethodsCOMPANION is a mixed-methods study with data derived from three subprojects. Subproject 1: Prospective, cross-sectional multi-centre study collecting data on patients’ needs which reflect the complexity of the respective patient situation, as well as data on resources that are required to meet these needs in specialist palliative care units, palliative care advisory teams, and specialist palliative home care. Subproject 2: Qualitative study including the development of a literature-based preliminary list of characteristics, expert interviews, and a focus group to develop a taxonomy for specialist palliative care models. Subproject 3: Multi-centre costing study based on resource data from subproject 1 and data of study centres. Data and results from the three subprojects will inform each other and form the basis for the development of the casemix classification. Ultimately, the casemix classification will be developed by applying Classification and Regression Tree (CART) analyses using patient and complexity data from subproject 1 and patient-related cost data from subproject 3.DiscussionThis is the first multi-centre costing study that integrates the structure and process characteristics of different palliative care settings in Germany with individual patient care. The mixed methods design and variety of included data allow for the development of a casemix classification that reflect on the complexity of the research subject. The consecutive inclusion of all patients cared for in participating study centres within the time of data collection allows for a comprehensive description of palliative care patients and their needs. A limiting factor is that data will be collected at least partly during the COVID-19 pandemic and potential impact of the pandemic on health care and the research topic cannot be excluded.Trial registrationGerman Register for Clinical Studies trial registration number: DRKS00020517.

"Creativity and a Mindset Shift were Essential." Impact of the COVID-19 Pandemic on Specialized Palliative Home: A Nationwide Online Survey

Objectives The aim of this study was to explore the impact of the COVID-19 pandemic and the efforts taken to contain it on specialized palliative homecare (SPHC) practice from the perspective of SPHC team leaders.Methods In this cross-sectional study, an online questionnaire with quantitative and qualitative questions was developed and used, focusing on the experience of SAPV in the first and second wave of the COVID-19 pandemic in Germany. In a structured recruitment process, all German SPHC teams (n=357) were invited to participate. Results From 10/10/2020 to 07/01/2021, 154 SPHC teams participated (response rate 43%). They described clear effects of the COVID-19 pandemic on their activities. Despite pandemic-related problems with staff availability (78.5%), patient care was ensured without major problems. The number of patients to be cared for remained stable for most teams, was increasing for some, and decreasing only for a few. A central factor was the switch from direct contact with patients and their relatives to telephone contact. Additional complicating factors were the general avoidance of contacts, compliance with hygiene regulations for necessary personal contacts, and pandemic-related uncertainties and fears, both among the team itself and among relatives and patients. The procurement of protective equipment was a challenge during the first wave. Problems in collaboration with network partners (e. g., nursing homes and volunteer hospice services) had decreased over the course of the pandemic, but were greater than before in all areas. Many measures to cope with the pandemic challenges were implemented, others were assessed as useful but not implemented, and others as not useful or feasible. Conclusions SPHC teams report that despite the need to adapt many processes to the pandemic situation, they have managed to maintain patient care, although under more difficult conditions.

Out-of-Hospital Emergencies in Children Under Palliative Home Care.

Introduction: Specialized palliative home care (SPHC) enables children and adolescents with life-limiting illnesses and complex needs to receive care at home. In addition to controlling symptoms and stabilizing the psychosocial situation, crisis anticipation is a component of SPHC. Since the establishment of the reporting SPHC team, parents have called for additional help from emergency medical services (EMS) in emergency situations with unexpected frequency. Children with life limiting diseases could undergo invasive procedures and unhelpful treatments with uncertain consequences. The questions arose as to which factors led to the involvement of the EMS in a palliative situation, what therapy was performed and what outcome could be reached.Methods: Records of the pediatric SPHC patients and EMS call-outs in these children of the reporting SPHC-team in the central region of Hesse, Germany (population: 1.1 million) were retrospectively analyzed from 01.11.2014 to 01.05.2021. The causes of the call-outs, the existence of an emergency agreement, the National Advisory Committee for Aeronautics (NACA) score, EMS therapy and outcome were examined. Patient data included age, palliative-justifying diagnosis, duration and intensity of care, place of death and median overall survival (MOS) and palliative SHPC treatment.Results: In total, 172 patients were analyzed during the study period. There were 27 EMS calls for a total of 20 patients/families (= EMS group). Palliative illness or a complication was the most frequent cause of call-outs. The patients in the EMS group were significantly less likely to have a DNR order, required more home visits and telephone calls and were under SPHC care for longer. There was a significantly higher proportion of crisis interventions at home visits. The children in the EMS group died less often from the underlying disease. Of the remaining 152 patients (= non-EMS group), a significantly higher proportion had a European home country.Conclusions: Despite the introduction of the SPHC, parents still call the EMS. Good cooperation and joint training should be sought to prepare all those involved for future call-outs.

'It felt like a black hole, great uncertainty, but we have to take care for our patients'-Qualitative findings on the effects of the COVID-19 pandemic on specialist palliative home care.

The COVID-19 pandemic has affected health care systems worldwide. Multidisciplinary teams provide specialist palliative home care (SPHC) for patients with incurable, severe, progressive diseases. These patients are at the same time at high risk, if infected, highly constricted by containment measures, and dependent on support. To explore i) how German SPHC teams were affected by the pandemic during the first wave, ii) which challenges they faced, and iii) which strategies helped to handle the consequences of the COVID-19 pandemic for providing good SPHC. Four focus groups (with representatives of 18 SPHC teams) and five guided interviews with stakeholders were conducted and analysed using qualitative content analysis. Seven key categories emerged from the data. A category in the background describes dependence on organizational characteristics (e.g. sponsorship), which varied by regional factors. Information management was a challenge to SPHC teams, as they had to collect, interpret and adapt, and disseminate information. They reported a shift in patient care because of the COVID-19 pandemic, due to restricted home visits, visitation ban in nursing homes, and difficulties for hospital, hospice and nursing home admissions. Measures to reduce risk of infection impeded teamwork. Teams relied upon their local networks in crisis management, but felt often overlooked by local health authorities. Their respective SPHC state associations supported them in information management and exchange. The pandemic has severely impacted home care for especially vulnerable seriously ill and dying people. A good network with local health providers and authorities could help to harmonize local regulations and ensure quality care for all patient groups. SPHC teams could play an important role in caring for palliative patients with COVID-19 who are not admitted to a hospital due to preferences or resources.

Dying within dyads: Stress, sense of security and support during palliative home care.

ObjectivesTo examine similarities and dissimilarities in patient and family caregiver dyads in their experience of stress, support, and sense of security.Methods144 patients and their family caregivers participated. Patients were admitted to six Swedish specialist palliative home care units and diagnosed with a non-curable disease with an expected short survival. We analysed similarity patterns of answers within dyads (correlations) as well as dissimilarities, expressed as the difference between within-dyad responses. The latter were subjected to a model-building procedure using GLM, with 13 sociodemographic and clinical characteristics as independent variables.ResultsWithin dyads, patients and family caregivers scored similar in their perception of support and sense of security with care. There was also dissimilarity within dyad responses in their perception of stress and support that could be attributed to sociodemographic or clinical characteristics. When patients scored higher levels of stress than family caregivers, the family caregiver was more likely to be male. Also family caregiver attachment style (attachment anxiety), patient age and the relationship of the family caregiver to the patient explained dissimilarities within the dyads.ConclusionsPatients and family caregivers within the dyads often, but not always, had similar scores. We suggest that it is important that the healthcare staff identify situations in which perceptions within the dyads regarding stress and perception of support differ, such that they can recognise patients’ and family caregivers’ unique needs in different situations, to be able to provide adequate support and facilitate dyadic coping.