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.

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A Study of the Association Between Multidisciplinary Home Care and Home Death Among Thai Palliative Care Patients

American Journal of Hospice and Palliative Medicine® ◽

10.1177/1049909116631550 ◽

2016 ◽

Vol 34 (5) ◽

pp. 397-403 ◽

Cited By ~ 3

Author(s):

Kittiphon Nagaviroj ◽

Thunyarat Anothaisintawee

Keyword(s):

Palliative Care ◽

Logistic Regression ◽

Home Care ◽

Home Visits ◽

Place Of Death ◽

Home Death ◽

Data Set ◽

Palliative Home Care ◽

Palliative Care Teams ◽

At Home

Purpose: Many terminally ill patients would prefer to stay and die in their own homes, but unfortunately, some may not be able to do so. Although there are many factors associated with successful home deaths, receiving palliative home visits from the multidisciplinary care teams is one of the key factors that enable patients to die at home. Our study was aimed to find whether there was any association between our palliative home care program and home death. Methods: A retrospective study was conducted in the Department of Family Medicine at Ramathibodi Hospital between January 2012 and May 2014. All of the patients who were referred to multidisciplinary palliative care teams were included. The data set comprised of patient’s profile, disease status, functional status, patient’s symptoms, preferred place of death, frequency of home visits, types of team interventions, and patient’s actual place of death. Multiple logistic regression was applied in order to determine the association between the variables and the probability of dying at home. Results: A total of 142 patients were included into the study. At the end of the study, 50 (35.2%) patients died at home and 92 (64.8%) patients died in the hospital. The multivariate logistic regression analysis demonstrated a strong association between multidisciplinary home care and home death (odds ratio 6.57, 95% confidence interval [CI] 2.48-17.38). Conclusion: Palliative home care was a significant factor enabling patients who want to die at home. We encourage health policy makers to promote the development of community-based palliative care programs in Thailand.

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Gastrointestinal Symptoms in Children With Life-Limiting Conditions Receiving Palliative Home Care

Frontiers in Pediatrics ◽

10.3389/fped.2021.654531 ◽

2021 ◽

Vol 9 ◽

Author(s):

Holger Hauch ◽

Peter Kriwy ◽

Andreas Hahn ◽

Reinhard Dettmeyer ◽

Klaus-Peter Zimmer ◽

...

Keyword(s):

Palliative Care ◽

Home Care ◽

Phase 1 ◽

Gastrointestinal Symptoms ◽

Phase 2 ◽

Palliative Home Care ◽

Asymptomatic Children ◽

Number Of Patients ◽

Gi Symptoms ◽

At Home

Context: Children with life-limiting diseases suffer from gastrointestinal (GI) symptoms. Since the introduction of specialized palliative home care (SPHC) in Germany, it is possible to care for these children at home. In phase 1 of care the aim is to stabilize the patient. In phase 2, terminal support is provided.Objectives: Analysis were performed of the differences between these phases. The causes and modalities/outcome of treatment were evaluated.Methods: A retrospective study was performed from 2014 to 2020. All home visits were analyzed with regard to the abovementioned symptoms, their causes, treatment and results.Results: In total, 149 children were included (45.9% female, mean age 8.17 ± 7.67 years), and 126 patients were evaluated. GI symptoms were common in both phases. Vomiting was more common in phase 2 (59.3 vs. 27.1%; p < 0.001). After therapy, the proportion of asymptomatic children in phase 1 increased from 40.1 to 75.7%; (p < 0.001). Constipation was present in 52.3% (phase 1) and 54.1% (phase 2). After treatment, the proportion of asymptomatic patients increased from 47.3 to 75.7% in phase 1 (p < 0.001), and grade 3 constipation was reduced from 33.9 to 15% in phase 2 (p < 0.05).Conclusion: Painful GI symptoms occur in both palliative care phases but are more common in phase 2. The severity and frequency can usually be controlled at home. The study limitations were the retrospective design and small number of patients, but the study had a representative population, good data quality and a unique perspective on the reality of outpatient pediatric palliative care in Germany.

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Impact on place of death in cancer patients: a causal exploration in southern Switzerland

BMC Palliative Care ◽

10.1186/s12904-020-00664-4 ◽

2020 ◽

Vol 19 (1) ◽

Author(s):

Heidi Kern ◽

Giorgio Corani ◽

David Huber ◽

Nicola Vermes ◽

Marco Zaffalon ◽

...

Keyword(s):

Home Care ◽

End Of Life ◽

Cancer Patients ◽

Expert Knowledge ◽

Place Of Death ◽

Data Mining Algorithm ◽

Open Communication ◽

Data Set ◽

Palliative Home Care ◽

At Home

Abstract Background Most terminally ill cancer patients prefer to die at home, but a majority die in institutional settings. Research questions about this discrepancy have not been fully answered. This study applies artificial intelligence and machine learning techniques to explore the complex network of factors and the cause-effect relationships affecting the place of death, with the ultimate aim of developing policies favouring home-based end-of-life care. Methods A data mining algorithm and a causal probabilistic model for data analysis were developed with information derived from expert knowledge that was merged with data from 116 deceased cancer patients in southern Switzerland. This data set was obtained via a retrospective clinical chart review. Results Dependencies of disease and treatment-related decisions demonstrate an influence on the place of death of 13%. Anticancer treatment in advanced disease prevents or delays communication about the end of life between oncologists, patients and families. Unknown preferences for the place of death represent a great barrier to a home death. A further barrier is the limited availability of family caregivers for terminal home care. The family’s preference for the last place of care has a high impact on the place of death of 51%, while the influence of the patient’s preference is low, at 14%. Approximately one-third of family systems can be empowered by health care professionals to provide home care through open end-of-life communication and good symptom management. Such intervention has an influence on the place of death of 17%. If families express a convincing preference for home care, the involvement of a specialist palliative home care service can increase the probability of home deaths by 24%. Conclusion Concerning death at home, open communication about death and dying is essential. Furthermore, for the patient preference for home care to be respected, the family’s decision for the last place of care seems to be key. The early initiation of family-centred palliative care and the provision of specialist palliative home care for patients who wish to die at home are suggested.

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Palliative Outpatient Care in Children with Hematologic Malignancies Compared to Solid Tumors

Blood ◽

10.1182/blood.v128.22.5977.5977 ◽

2016 ◽

Vol 128 (22) ◽

pp. 5977-5977

Author(s):

Michaela Kuhlen ◽

Jessica I Hoell ◽

Gabriele Gagnon ◽

Stefan Balzer ◽

Arndt Borkhardt ◽

...

Keyword(s):

Palliative Care ◽

T Cell ◽

Home Care ◽

Solid Tumors ◽

Cell Lymphoma ◽

Home Visits ◽

Hematologic Malignancies ◽

Home Setting ◽

Palliative Home Care ◽

Single Child

Abstract Background: The palliative care needs of children with cancer strongly depend on tumor entity and localization. However, little is known about the needs of children with hematologic malignancies (HM), as a much larger body of publications deals with the needs of children with solid tumors. Methods: Patient data were extracted from the database of one of the largest pediatric palliative care teams (PPCT) in Germany. Information included demographic data, diagnoses, patient contacts, symptoms, and medications. Children with HM were compared to other malignancies using bivariate analyses. Results: Between 01/2013 and 05/2016, the PPCT cared for a total of 178 patients. Of the 58 children with cancer (3 bone tumors, 25 brain tumors, 6 neuroblastomas, 9 soft tissue sarcomas, 9 other solid tumors), 6 (10.3%) had a hematologic malignancy (2 acute lymphoblastic leukemia, 2 acute myeloid leukemia, 1 T-cell lymphoma, 1 Burkitt lymphoma). Two patients underwent hematopoietic stem cell transplantation. Median age of patients with HM at the beginning of PCT was 12.1 years (range 5.4-18.9 years), 5 children were male. The number of children with HM cared for in the home setting was likely low due to the fact that most children with relapsed or refractory leukemia die during intensive chemotherapy and are thus still cared for in hospital. Time from start of palliative home care to death was the same in children with HM compared to non HM (54 vs. 53 days in care), although the range of days in palliative care was larger in children with non HM (1 to 226 days) compared to children with HM (10 to 116 days). The number of home visits was equal (9.7 vs. 9.4) as was the number of home visits per days in care (0.18 vs. 0.18). In both patient groups, most patients died at home or in hospice. The leading symptoms in children with HM were weakness and anxiety, whereas the most frequently reported symptom in patients with non HM was difficulty to move around (i.e. walk). Other frequently reported symptoms in non HM were neurological and gastrointestinal problems. In children with non HM, the occurring symptoms were much more variable. Mucosal bleeding, hematoma and/or petechiae were recurring problems in children with leukemia requiring platelet transfusions in the home setting, however, not a single child developed massive external hemorrhage. More children with non HM needed morphine-based pain medication (33% vs. 54%). Overall, less drugs for symptom control either regular or on demand medication were needed in children with HM. All patients with HM were continued on palliative chemotherapy. Although anti-infectious prophylaxis was discontinued at the beginning of palliative home care, sepsis did not occur in any child. Four of the HM patients died due to disease-related progressive weakness, one through an acute event (most likely intracranial hemorrhage), and one patient with a T-cell lymphoma and a large mediastinal mass died during palliative sedation. Conclusions: Children with hematologic malignancies who are referred to outpatient palliative care appear to have an equal length of care compared to other cancer patients. A lower number of medications (including morphine-based drugs) is necessary, however transfusion rates are higher. As might have been a fear of both parents and treating physicians, not a single child developed massive external hemorrhage. Better knowledge about the special symptoms and needs of children with hematologic malignancies will enable PPCTs to provide best possible care. Disclosures No relevant conflicts of interest to declare.

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Attitudes of palliative home care physicians towards palliative sedation at home in Italy

Supportive Care in Cancer ◽

10.1007/s00520-017-3581-3 ◽

2017 ◽

Vol 25 (5) ◽

pp. 1615-1620 ◽

Cited By ~ 4

Author(s):

Sebastiano Mercadante ◽

Francesco Masedu ◽

Alessandro Mercadante ◽

Franco Marinangeli ◽

Federica Aielli

Keyword(s):

Home Care ◽

Palliative Sedation ◽

Palliative Home Care ◽

At Home

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District nurses' experiences of providing palliative care in the home: An interview study

Nordic Journal of Nursing Research ◽

10.1177/2057158519857002 ◽

2019 ◽

Vol 40 (1) ◽

pp. 15-24 ◽

Cited By ~ 1

Author(s):

Elina Mikaelsson Midlöv ◽

Terese Lindberg

Keyword(s):

Palliative Care ◽

Content Analysis ◽

Home Care ◽

Qualitative Content Analysis ◽

Care Team ◽

Organizational Changes ◽

Structured Interviews ◽

Palliative Home Care ◽

District Nurses ◽

At Home

The trend shows that more people are choosing to die at home. Since at home palliative care is often provided by district nurses, their work will be affected, and the burden will increase. The aim of this study was to illuminate district nurses' experiences of providing palliative care in the home. Qualitative semi-structured interviews were conducted with 12 district nurses. The interviews were analyzed according to the qualitative content analysis methods that Graneheim and Lundman describe. Findings consist of three main categories with nine subcategories. The conclusion is that collaboration with others is essential. Providing palliative care in the home is both emotionally rewarding and demanding, and the work is additionally time and expertise consuming. District nurses want more resources and organizational changes, such as access to doctors and a palliative home care team who only work with these patients. This would be an advantage both for district nurses and the patients.

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Patients’ Experiences of Telehealth in Palliative Home Care: Scoping Review

Journal of Medical Internet Research ◽

10.2196/16218 ◽

2020 ◽

Vol 22 (5) ◽

pp. e16218 ◽

Cited By ~ 8

Author(s):

Simen A Steindal ◽

Andréa Aparecida Goncalves Nes ◽

Tove E Godskesen ◽

Alfhild Dihle ◽

Susanne Lind ◽

...

Keyword(s):

Quality Of Life ◽

Health Care ◽

Palliative Care ◽

Home Care ◽

Scoping Review ◽

Health Care Professionals ◽

Visual Features ◽

Palliative Home Care ◽

At Home

Background Telehealth is increasingly being used in home care and could be one measure to support the needs of home-based patients receiving palliative care. However, no previous scoping review has mapped existing studies on the use of telehealth for patients in palliative home care. Objective The aim of this study was to map and assess published studies on the use of telehealth for patients in palliative home care. Methods A scoping review was conducted using the methodological framework of Arksey and O’Malley. Reporting was guided by Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews. A systematic and comprehensive search of Medical Literature Analysis and Retrieval System Online, EMBASE, PsycINFO, and Cumulative Index to Nursing and Allied Health was performed for studies published between January 2000 and October 2018. Two authors independently assessed eligibility and extracted data. Results The review included 22 papers from 19 studies. Four thematic groupings were identified among the included papers: easy and effortless use of telehealth regardless of the current health condition, visual features that enhance communication and care via telehealth, symptom management and self-management promotion by telehealth, and perceptions of improved palliative care at home. Conclusions The use of telehealth in palliative home care seems to be feasible, improving access to health care professionals at home and enhancing feelings of security and safety. The visual features of telehealth seem to allow a genuine relationship with health care professionals. However, there are contradicting results on whether the use of telehealth improves burdensome symptoms and quality of life. Future research should investigate the experiences of using telehealth among patients with life-limiting illness other than cancer and patients aged 85 years or older. More research is needed to increase the body of knowledge regarding the effectiveness of telehealth on symptoms and quality of life.

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Impact on place of death in cancer patients: a causal exploration in southern Switzerland

10.21203/rs.3.rs-29758/v1 ◽

2020 ◽

Author(s):

Heidi Kern ◽

Giorgio Corani ◽

David Huber ◽

Nicola Vermes ◽

Marco Zaffalon ◽

...

Keyword(s):

Home Care ◽

End Of Life ◽

Cancer Patients ◽

Family Caregivers ◽

Patient Preference ◽

End Of Life Care ◽

Place Of Death ◽

Life Care ◽

Palliative Home Care ◽

At Home

Abstract Background Most terminally ill cancer patients prefer to die at home, but a majority die in institutional settings. Research questions about this discrepancy have not been fully answered. This study applies artificial intelligence and machine learning techniques to explore the complex network of factors and the cause-effect relationships affecting the place of death, with the ultimate aim of developing policies favouring home-based end-of-life care. Methods A data mining algorithm (a classifier) and a causal probabilistic model (a credal network) for data analysis were developed with information derived from expert knowledge that was merged with data from 116 deceased cancer patients in southern Switzerland. This data set was obtained via a retrospective clinical chart review. Results Dependencies of disease and treatment-related decisions demonstrate an influence on the place of death of 13%. Anticancer treatment in advanced disease prevents or delays communication about the end of life between oncologists, patients and families. Unknown preferences for the place of death represent a great barrier to a home death. A further barrier is the limited availability of family caregivers for terminal home care. The family’s preference for the last place of care has a high impact on the place of death of 51%, while the influence of the patient’s preference is low, at 14%. Approximately one-third of family systems can be empowered by health care professionals to provide home care through open end-of-life communication and good symptom management. Such intervention has an influence on the place of death of 17%. If families express a convincing preference for home care, the involvement of a specialist palliative home care service can increase the probability of home deaths by 24%. Conclusion Concerning death at home, open communication about dying is essential. Furthermore, for the patient preference for home care to be respected, the family’s decision for the last place of care seems key. Early initiation of family-centred palliative care and provision of specialist palliative home care for patients who wish to die at home are suggested. Keywords Cancer; End-of-life care; Palliative Home care; Place of death; Communication; Family caregivers; Patient preference; Bayesian networks; Credal networks; Bayesian classifiers

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

BMC Palliative Care ◽

10.1186/s12904-021-00844-w ◽

2021 ◽

Vol 20 (1) ◽

Author(s):

Lina Oelschlägel ◽

Alfhild Dihle ◽

Vivi L. Christensen ◽

Kristin Heggdal ◽

Anne Moen ◽

...

Keyword(s):

Health Care ◽

Home Care ◽

Health Care Professionals ◽

Qualitative Content Analysis ◽

Palliative Home Care ◽

Patients With Cancer ◽

Welfare Technology ◽

Professional Care ◽

Municipal Health ◽

At Home

Abstract 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.

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