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

Background 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. Aim 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. Method Four focus groups (with representatives of 18 SPHC teams) and five guided interviews with stakeholders were conducted and analysed using qualitative content analysis. Results 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. Discussion 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.

Family physicians supporting patients with palliative care needs within the patient medical home in the community: an appreciative inquiry study

ObjectivesCanadians want to live and die in their home communities. Unfortunately, Canada has the highest proportion of deaths in acute care facilities as compared with other developed nations. This study aims to identify the essential components required to best support patients and families with palliative care needs in their communities to inform system changes and empower family physicians (FPs) in providing community-based palliative care for patients.DesignAppreciative inquiry (AI) methodology with individual interviews. Interview transcripts were analysed iteratively for emerging themes and used to develop ‘possibility statements’ to frame discussion in subsequent focus groups. A conceptual framework emerged to describe the ‘destiny’ state as per AI methods.SettingFPs, palliative home care providers, patients and bereaved caregivers were recruited in the urban and surrounding rural health authority zones of Calgary, AB, Canada.Participants9 females and 9 males FPs (range of practice years 2–42) in interviews; 8 bereaved caregivers, 1 patient, 26 palliative home care team members in focus groups. Interviews and focus groups were recorded digitally and transcribed with consent.ResultsThe identified themes that transcended all three groups created the foundation for the conceptual framework. Enhanced communication and fostering team relationships between all care providers with the focus on the patient and caregivers was the cornerstone concept. The FP/patient relationship must be protected and encouraged by all care providers, while more system flexibility is needed to respond more effectively to patients. These concepts must exist in the context that patients and caregivers need more education regarding the benefits of palliative care, while increasing public discourse about mortality.ConclusionsKey areas were identified for how the patient’s team can work together effectively to improve the patient and caregiver palliative care journey in the community with the cornerstone element of building on the trusting FP–patient longitudinal relationship.

Gender and Observed Complexity in Palliative Home Care: A Prospective Multicentre Study Using the HexCom Model

This study analyses gender differences in the complexity observed in palliative home care through a multicentre longitudinal observational study of patients with advanced disease treated by palliative home care teams in Catalonia (Spain). We used the HexCom model, which includes six dimensions and measures three levels of complexity: high (non-modifiable situation), medium (difficult) and low. Results: N = 1677 people, 44% women. In contrast with men, in women, cancer was less prevalent (64.4% vs. 73.9%) (p < 0.001), cognitive impairment was more prevalent (34.1% vs. 26.6%; p = 0.001) and professional caregivers were much more common (40.3% vs. 24.3%; p < 0.001). Women over 80 showed less complexity in the following subareas: symptom management (41.7% vs. 51,1%; p = 0.011), emotional distress (24.5% vs. 32.8%; p = 0.015), spiritual distress (16.4% vs. 26.4%; p = 0.001), socio-familial distress (62.7% vs. 70.1%; p = 0.036) and location of death (36.0% vs. 49.6%; p < 0.000). Men were more complex in the subareas of “practice” OR = 1.544 (1.25–1.90 p = 0.000) and “transcendence” OR = 1.52 (1.16–1.98 p = 0.002). Observed complexity is related to male gender in people over 80 years of age. Women over the age of 80 are remarkably different from their male counterparts, showing less complexity regarding care for their physical, psycho-emotional, spiritual and socio-familial needs.

Community Nurses’ Preparations for and Challenges in Providing Palliative Home Care: A Qualitative Study

Hospitals have played a leading role in providing palliative care in Taiwan as its care model has developed over the past few decades. However, earlier local studies in Taiwan showed that terminal patients prefer to die at home, highlighting the need to promote community-based palliative care instead of hospital-based care. Along with this shift, how community nurses provide palliative home care merits further exploration. This qualitative descriptive study aims to understand (1) how community nurses implement community-based palliative care, (2) what preparations are needed, and (3) what challenges they may face. Purposive sampling was used for recruiting nurses. We conducted one-on-one, in-depth, semi-structured interviews. Interview recordings were transcribed verbatim and analyzed using thematic analysis. Eight community nurses with a range of experience in palliative home care were interviewed. Four major themes emerged: (1) Opportunities, (2) Qualifications, (3) Support, and (4) Commitments. Psychological preparedness, well-developed professional capabilities, external assistance, and peer support motivate community nurses to offer community-based palliative care. As the requests for palliative home care services increase, community nurses play a critical role in palliative home care. Although the sample size is small and the findings retrieved from a small number of experiences might not be generalized to every region, the study results could inform future experience-sharing and workshop sessions to train more nurses for community-based care, expanding service coverage, and providing optimal palliative care.

Prognosis does not change the landscape: palliative home care clients experience high rates of pain and nausea, regardless of prognosis

Background Most individuals who typically receive palliative care (PC) tend to have cancer and a relatively short prognosis (< 6 months). People with other life-limiting illnesses can also benefit from a palliative care approach. However, little is known about those who receive palliative home care in Ontario, Canada’s largest province. To address this gap, the goal of this project was to understand the needs, symptoms and potential differences between those with a shorter (< 6 months) and longer prognosis (6+ months) for individuals receiving PC in the community. Methods A cross-sectional analysis was conducted using interRAI Palliative Care (interRAI PC) assessment data collected between 2011 and 2018. Individuals with a shorter prognosis (< 6 months; n = 48,019 or 64.1%) were compared to those with a longer prognosis (6+ months; n = 26,945) across several clinical symptoms. The standardized difference (stdiff), between proportions, was calculated to identify statistically meaningful differences between those with a shorter and longer prognosis. Values of the stdiff of 0.2 or higher (absolute value) indicated a statistically significant difference. Results Overall, cancer was the most prevalent diagnosis (83.2%). Those with a shorter prognosis were significantly more likely to experience fatigue (75.3% vs. 59.5%; stdiff = 0.34) and shortness of breath at rest (22.1% vs. 13.4%; stdiff = 0.23). However, the two groups were similar in terms of severe pain (73.5% vs. 66.5%; stdiff = − 0.15), depressive symptoms (13.2% vs. 10.7%; stdiff = 0.08) and nausea (35.7% vs. 29.4%; stdiff = 0.13). Conclusions These results highlight the importance of earlier identification of individuals who could benefit from a palliative approach to their care as individuals with a longer prognosis also experience high rates of symptoms such as pain and nausea. Providing PC earlier in the illness trajectory has the potential to improve an individual’s overall quality of life throughout the duration of their illness.

Implementing welfare technology in palliative homecare for patients with cancer: a qualitative study of health-care professionals’ experiences

Background Introducing welfare technology in home-based palliative care has been suggested to be beneficial for improving access to health care at home and enhancing patients’ feelings of security and safety. However, little is known about the experiences of municipal health-care professionals using welfare technology in palliative home care. The aim of this study was to explore municipal health-care professionals’ experiences regarding the significant challenges, facilitators, and assessments associated with implementing a technological solution named “remote home care” in palliative home care for patients with cancer. Methods A qualitative, descriptive, exploratory design was used. Data were collected through focus-group interviews and individual semi-structured interviews with interdisciplinary health-care professionals who had experience using remote home care in clinical encounters with cancer patients who were in the palliative phase and living at home. Data were analyzed using qualitative content analysis. Results Three themes were identified: 1) shifting from objective measures to assessing priorities for patients, 2) lack of experience and personal distress regarding cancer inhibits professional care, and 3) prominent organizational challenges undermine the premise of remote home care. Conclusion The results showed that shifting from a disease-focused to a person-centered approach enables health-care professionals to assess patients’ personal priorities. However, health-care professionals’ uncertainty and lack of knowledge and experience, along with organizational issues concerning information-sharing, represent great challenges that have the potential to inhibit professional care. The availability of networks through which difficult issues can be discussed was highlighted as being a fundamental resource for facilitating the provision of care.

Palliative home care: health-related quality of life

ObjectiveTo determine the relationship between physical symptoms and health-related quality of life (HRQOL) of people enrolled in a palliative home care programme in Bogota, Colombia.MethodsA quantitative, observational, analytical, cross-sectional study. 123 people, chronically ill and enrolled in a palliative home care programme, participated. Convenience sampling was used, and data were collected during home visits.ResultsThe HRQOL was perceived as fair by 42.3% of the participants, and the overall score was below the expected mean value (140.5). The psychological dimension score was also below the mean, while above-average results were obtained in the physical, social and spiritual dimensions. Pain (78.2%), insomnia (82.3%) and tiredness (77.4%) were the most altered symptoms. Statistically significant differences were found between HRQOL and educational level, occupation, low socioeconomic strata and religious commitment. Statistically significant associations were found between depression and the psychological dimension (r=0.208; p=0.020) and between depression and overall HRQOL (r=0.181; p=0.045). No relationship was observed between HRQOL and physical symptoms.ConclusionPalliative home care programmes should thoroughly address psychological aspects, such as depression and anxiety, to ensure the best quality of life possible for the patients they assist.

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

Objectives To examine similarities and dissimilarities in patient and family caregiver dyads in their experience of stress, support, and sense of security. Methods 144 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. Results Within 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. Conclusions Patients 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.