Palliative Home Research Articles

Palliative Homecare in Chronic Liver Disease: A Cohort Analysis of Factors and Outcomes Associated with Home Palliative Care in Patients with End-Stage Liver Disease.

Objective: The prevalence and mortality of chronic liver disease has risen significantly. In end-stage liver disease (ESLD), the survival of patients is approximately 2 years. Despite the poor prognosis and high symptom burden, integration of palliative care in ESLD is reduced, and the majority of patients continue to die in inpatient care. We aim to assess predictors and outcomes of home palliative care, as well as factors associated with death at home in patients with ESLD. Methods: Retrospective cohort study of patients with ESLD, followed by a palliative care team between 2017 and 2022. Information regarding patient demographics, ESLD etiology, decompensations, and interventions was collected. Two-sided tests were used to identify factors associated with home palliative care. Results: We analyzed 75 patients: 44% had home palliative care and 33% died at home. ESLD patients with home palliative care were older (72.52 vs 64.45; p = 0.002), had a longer palliative care intervention time (149.97 ± 196.23 vs 43.69 ± 100.60 days; p = 0.007), higher rates of ascites or hepatic encephalopathy (χ2 = 11.024; p = 0.029), and hepatocarcinoma (90.9% vs 64.3%; p = 0.007). Patients with home palliative care had a reduction in-hospital admissions (2.61 vs 1.06; p = 0.000) and a greater probability of death at home (66.7% vs 33.3%; p = 0.000). Patients who died at home (33.3%) were older (72.20 vs 64.40; p = 0.000) and had longer palliative care intervention time (178.80 ± 211.78 vs 46.28 ± 99.67 days; p = 0.006). Conclusion: Home palliative care in ESLD differs based on demographics and disease complications, with a positive impact of homecare translated into a reduction in hospital admissions and an increased probability of death at home.

Ethical Dilemmas in Home Palliative Care

Abstract Background In the past two decades, there has been a noticeable shift towards home-based care, reflecting the broader trend among OECD countries to prioritize a comprehensive approach to health and well-being. This approach emphasizes preventive and proactive measures, often relying on home-based care delivered by multidisciplinary teams providing both curative and palliative care. However, the unique nature of providing care in a home environment raises ethical questions among healthcare providers, necessitating high levels of attentiveness and sensitivity from the caregiving team to address them effectively. Research Objectives This study aims to identify ethical challenges encountered by a multidisciplinary team, as perceived by managers of an organization offering home palliative services in Israel. Methods A qualitative study was conducted, involving interviews with nine key managers to explore prevalent ethical issues in delivering home-based care. Findings Thematic analysis unveiled common ethical dilemmas in providing Home Palliative Care. These dilemmas include balancing patient preferences with professional obligations, addressing the needs of both patients and their families, navigating caregiver-patient relationships, understanding patients’ cultural backgrounds, and advocating for home care as the preferred option while considering alternative treatment approaches. Conclusions Home palliative care poses ethical dilemmas for caregiving teams. It’s imperative for organizations in the home care sector to devise strategies aimed at assisting teams in navigating these challenges while upholding the autonomy and dignity of patients within their home environment. Key messages • Home-based care faces ethical challenges, requiring strategies to balance patient preferences and professional duties. • Ethical home hospice care needs strategies that respect patient autonomy and dignity.

Nursing Home Palliative Care Referral Process, Barriers, and Proposed Solutions: A Qualitative Study.

Despite evidence that specialized care for seriously ill nursing home (NH) residents is needed, barriers to accessing palliative care (PC) remain. A significant issue is the complexity of the referral process that inhibits timely and equitable access to care. This qualitative descriptive study explored the PC referral process in NHs. Using rapid qualitative analysis with semi-structured interview data from NH staff, primary care, and specialty PC providers (N = 17) in six states, this study outlines a multistep referral process along with barriers and proposed solutions. Key recommendations include comprehensive PC education program development, implementation of an evidence-based PC screening tool, and the holistic integration of PC services in NHs.

Red Blood Cell Transfusions in Patients with Advanced Cancer Receiving Home Palliative Care.

Background: Red blood cell (RBC) transfusion is the standard treatment for anemia in advanced cancer. Nevertheless, guidelines for managing this condition are still not exhaustive. Objective: To investigate frequency, timing, and clinical characteristics associated with RBC transfusions in patients with advanced cancer assisted by at-home oncological care service and to evaluate the association between parameters at the entry and the possibility of receiving RBC transfusions during homecare. Design: Retrospective observational study without medication. Setting/Subjects: Patients with advanced cancer entered in homecare during 2021 living in Bologna (Italy). Measurements: Gender, tumor primary site, oncological therapy, and symptoms at the entry were considered as possible factors in a binary logistic regression for the possibility of receiving at least one RBC transfusion during assistance. Data about transfusions were analyzed, and the transfusion history for each patient from the entry to death was traced. Results: Among the 1108 patients admitted, 179 (16.2%) were given at least one RBC transfusion during homecare. Genitourinary, hematological malignancies, and being still in therapy for advanced cancer are associated with a higher probability of receiving RBC transfusion during assistance (p = 0.017, p < 0.001, and p = 0.032, respectively). Half of the patients (52%) underwent RBC transfusions less than a month before death. Duration of the assistance was correlated with the period from last transfusion to death (p < 0.001). Conclusion: Hematological and genitourinary cancer and being in simultaneous care at the entry were associated with transfusion. Although the appropriateness of this treatment remains to be defined in this population, transfused patients frequently received "late in life" transfusions.

Malnutrition is Associated With Fatigue and Anxiety in Advanced Cancer Patients Admitted to Home Palliative Care.

Information regarding the nutrition profile of advanced cancer patients followed at home is lacking. The aim of this study was to assess the nutritional status of patients who were admitted to specialized home palliative care, and examine eventual factors associated with malnutrition. Cross-sectional. Setting/subject: patients who were admitted to 2 specialized home palliative care programs. A consecutive sample of patients admitted to home care was selected. Depression, anxiety, nausea, poor appetite, and poor well-being were measured by numerical scale 0-10. Mini nutritional assessment form (MNA-SF), fatigue assessment scale (FAS), and sarcopenia by SARC-F. were performed. The use of drugs used for anorexia, including corticosteroids, progestins, or others, was recorded. Data of 135 patients were analyzed. Sixty-eight per cent and 77% of patients resulted to be malnourished and sarcopenic. In the multivariate regression analysis, anxiety (P = 0.036) and total FAS (P = 0.013) were independently associated with malnutrition. Fifty-five per cent of patients were receiving corticosteroids or megestol acetate. No significant associations with parameters examined were found. The majority of advanced cancer patients admitted to home palliative care were malnourished independently of the primary tumor diagnosis. Indeed, fatigue and anxiety were independently associated with malnutrition.

Characteristics of Patients With Amyotrophic Lateral Sclerosis Followed by a Home Palliative Care Team.

Information about patients with amyothrophic lateral sclerosis (ALS) followed at home is limited. To assess patients's characteristics at admission to a home palliative care program based on a multidisciplinary team, and the temporal course along the trajectory of ALS disease. Retrospective. Setting/subjects: Charts of a consecutive number of ALS patients who were referred to a specialistic home palliative care were reviewed. General data, referral, start of home palliative care, use of ventilator support and nutritional support, were recorded. The existence of advance directives and shared care planning was also collected. 82 patients were examined; 31 patients died before the term of the study and 51 patients were still living. No patient anticipately expressed their will regarding their treatments. However, a certain number of patients shared a care planning with ALS team, generally after starting home care. Most patients did not have ventilatory support at the beginning of home care assistance, but progressively received ventilatory support by NIV or MV, particularly those who were still living. NIV at start of home care was negatively correlated to frontotemporal dementia. (P = 0.015), and directly correlated to referral from hospital and GP (P = 0.031) and awareness of disease (P = 0.034). Gastrostomy at start of home care was positively correlated to referral from hospital (P = 0.046). Gastrostomy during home care was correlated to bulbar SLA (P = 0.017). The use of NIV during home care was positively correlated to shared care planning (P = 0.001). The continuous presence of a multi-specialist team may provide timely intervention, guarantee and trust on the part of the patient and family members.

Opioid Medication Errors in Patients Followed by Home Palliative Care Support Teams in the Community of Madrid

The presence of comorbidities and complex drug regimens makes palliative care patients more susceptible to opioid medication errors. Most of the studies conducted so far have mainly focused on patients admitted to hospitals or hospice facilities. During this study, we examined the frequency of medication errors with opioids and the causes and consequences for patients, followed by home palliative care teams. Errors occurred in 39% of patients (n = 378) and 27% of all prescribed opioids (n = 708). Of the 148 (39%) patients with error/s in the opioid/s prescribed, in 55% the patient and/or the caregiver were involved in the error; in 26% the health care providers were involved. An association was found between the presence of error in the prescribed opioid and the level of patient education, p = .038, and with the number of days of follow-up, p < .001. Considering their formulation, the prescribed opioids were associated with medication error, type of error, and cause of the error. The study demonstrated an association between the route of administration and error p < .004, and type of error p < .001.

Implementation of the e-IPOS in Home Palliative Cancer Care: A Quasiexperimental Pilot Study.

Electronic patient-reported outcome measures (e-PROMs) offer advantages in palliative cancer care, including rapid completion, improved data quality and direct storage, improving clinical decision-making. The electronic Integrated Palliative Care Outcome Scale (e-IPOS) in this context enables thorough self-assessment by patients, enhancing symptom management and self-reflection of their current situation. To evaluate the feasibility of implementing the e-IPOS in home palliative cancer care. The primary outcomes included the enrollment consent rate, study retention rate, e-IPOS completion rate and response completeness, and the number of clinical assessments and interventions performed during home visits. The secondary outcomes were the number of unscheduled visits and patients' perceived quality of life. A two-group quasiexperimental clinical pilot study. The control group received standard palliative care, the intervention group received standard care along with weekly e-IPOS completion during home visits. Both groups were enrolled for 4weeks. Adults with advanced cancer from the home palliative care unit of the Istituto Nazionale dei Tumori of Milan. Twenty-three patients were enrolled (74.19%), and 20 completed the study (drop-out: 13.04%). 82.5% of the expected e-IPOS responses were received, of which 96.9% were fully complete. In the intervention group, the Wilcoxon test showed an increase in identified needs and documented interventions (P < .05) and a decrease in unscheduled visits (P < .05). It is feasible to recruit people via home palliative care for an e-IPOS implementation study. Future fully powered studies should investigate the feasibility and assess patients' perceptions of its use to better understand its clinical benefits.

Do People Prefer Home Palliative Care? A Survey Study and Assessment of Associated Factors in China.

Objectives: This study examined people's preference for the location to receive palliative care services and determined the associated factors. Methods: A questionnaire with reference to the Chinese version of the Hospice Attitude Scale and the Death Correspondence Scale was designed, piloted, revised, and distributed online and in person to collect data (N = 762). Binary logistic regression was used to analyze the effects of relevant factors. Results: The average age of the participants was 38.1, with a relatively even gender distribution. Over 90% of the participants were either single/never married (44.9%) or married with children (46.0%). 58.1% of the respondents (N = 428) indicated that they would like to receive palliative care at home, compared to 41.9% who preferred receiving such care in institutions or other places (N = 309). Each time people's attitudes toward death became one point more positive, they were 10.2% more likely to choose to receive palliative care services at home. People with a neutral attitude toward palliative care, single/never married or divorced with children, and having/had an occupation in health and social work had higher odds of preferring receiving palliative care at home. Those who had poor self-rated health or with an educational background of primary school or lower or some college had lower odds of preferring receiving palliative care at home. Conclusions: The research showed that attitudes toward death and other factors were associated with people's preferences for palliative care locations. More accessible and affordable community-based and home-based palliative care services should be further explored and provided.

Family Perspectives on Key Elements of Good Home Palliative Care in South and Southeast Asia: A Scoping Review

Palliative care is a comprehensive approach aimed at improving the quality of life of patients with serious illness and their families. Nevertheless, there exists a dearth of systematically synthesized empirical evidence regarding the key elements that contribute to good home palliative care (HPC) from a familial standpoint in the context of South and Southeast Asia. This paper aims to describe family perspectives on key elements of good home palliative care in both regions. We conducted a scoping review using Arksey and O’Malley’s methodological framework. The search was done in 6 electronic databases: PubMed, Ovid MEDLINE, EMBASE, Web of Science, APA PsycINFO, and APA PsycArticles Full Text. Inclusion criteria were (1) exploring family experiences of palliative care, (2) home setting, and (3) South and Southeast Asian countries. Twenty-four studies were included from Bangladesh (n = 1), India (n = 6), Indonesia (n = 7), Malaysia (n = 2), Singapore (n = 2), and Thailand (n = 6). Five key elements of HPC from family perspectives were comprehensive moral and psychological support; religious and spiritual activities with religious figures involvement; empathetic, responsive, and continued home palliative care; adequate access to information and skills training; and facilitation in dealing with systemic barriers. The crucial role of religious and spiritual activities and the need for facilitation in facing systemic barriers were specific to South and Southeast Asia. HPC teams should be able to provide holistic support for patients and their families, which is influential for the quality of care. Improving care on a systemic level in these regions should be a policy priority.

Comparison of Simplified Palliative Prognostic Index and Palliative Performance Scale in Patients with Advanced Cancer in a Home Palliative Care Setting.

Objective: The Palliative Performance Scale (PPS) has been reported to be as accurate as Palliative Prognostic Index (PPI). PPS is a component of the simplified PPI (sPPI). It is unknown whether PPS is as accurate as sPPI. This study aimed to compare the prognostic performance of the PPS and sPPI in patients with advanced cancer in a home palliative care setting in South Korea. Methods: This was a secondary analysis of a prospective cohort study that included Korean patients with advanced cancer who received home-based palliative care. We used the medical records maintained by specialized palliative care nurses. We computed the prognostic performance of PPS and sPPI using the area under the receiver operating characteristic curve (AUROC) and calibration plots for the 3- and 6-week survival. Results: A total of 80 patients were included, with a median overall survival of 47.0 days. The AUROCs of PPS were 0.71 and 0.69 at the 3- and 6-week survival predictions, respectively. The AUROCs of sPPI were 0.87 and 0.73 at the 3- and 6-week survival predictions, respectively. The calibration plot demonstrated satisfactory agreement across all score ranges for both the PPS and sPPI. Conclusions: This study showed that the sPPI assessed by nurses was more accurate than the PPS in a home palliative care setting in predicting the 3-week survival in patients with advanced cancer. The PPS can be used for a quick assessment.

Challenges and Affecting Factors for Nurses in the Integration of Home Health Service and Palliative Care

Challenges and Affecting Factors for Nurses in the Integration of Home Health Service and Palliative Care

Are Surprise Questions and Probabilistic Questions by Nurses Useful in Home Palliative Care? A Prospective Study.

Background: Surprise questions (SQs) are used as screening tools in palliative care. Probabilistic questions (PQs) are more accurate than temporal predictions. However, no study has examined the usefulness of SQs and PQs assessed by nurses. Objectives: To examine the accuracy of nurses' SQ and PQ assessments in patients with advanced cancer receiving home palliative care. Design: A prospective single-center cohort study. Setting/Subjects: Adult patients with advanced cancer who received palliative care at home in South Korea between 2019 and 2020. Measurements: Palliative care specialized nurses were asked the SQ, "Would you be surprised if the patient died in a specific timeframe?" and PQ, "What is the probability that this patient will be alive (0 to 100%) within a specific timeframe?" at the 1-, 2-, 4-, and 6-week timeframes at enrollment. We calculated the sensitivities and specificities of the SQs and PQs. Results: 81 patients were recruited with 47days of median survival. The sensitivity, specificity, and overall accuracy (OA) of the 1-week SQ were 50.0, 93.2, and 88.9%, respectively. The accuracies for the 1-week PQ were 12.5, 100.0, and 91.3%, respectively. The 6-week SQ showed sensitivity, specificity, and OA of 84.6, 42.9, and 62.9%, respectively; the accuracies for the 6-week PQ were 59.0, 66.7, and 63.0%, respectively.Conclusion: The SQ and PQ showed acceptable accuracy in home palliative care patients. Interestingly, PQ showed higher specificity than SQ at all timeframes. The SQ and PQ assessed by nurses may be useful in providing additional prognostic information for home palliative care.

Clinical Experiences with Prevention Measures for Providing Home Palliative Care during the COVID-19 Pandemic

&lt;p&gt;新冠肺炎(coronavirus disease, COVID-19)自2020年開始蔓延全球，各國安寧居家照護工作也大受影響，台灣在2021年5月面臨本土疫情爆發，從事安寧居家照護的團隊人員亦面臨居家訪視過程中感染COVID-19之風險。本文為臺北市某區域醫院，長期致力於安寧療護服務，秉持社區醫療照護之責，疫情嚴峻期間仍竭盡所能持續提供安寧居家照護服務，因應疫情變化進行滾動式修正之防疫應變作為，以建立高品質之健康監測與管理。從訪視前風險評估、訪視時的防護措施及訪視後設備清消為第一線醫護專業人員把關，並運用視訊、影像傳輸等科技以促進醫病溝通即時處置，提供個案及家屬專業照護指導，讓個案在家屬陪伴下，安心在宅善終，期望藉此經驗分享，提供從事安寧居家照護醫護團隊人員，執行居家訪視照護之防疫處置參考。&lt;/p&gt; &lt;p&gt;&amp;nbsp;&lt;/p&gt;&lt;p&gt;The COVID-19 outbreak since 2020 has affected the palliative care services in several countries. With the threat of the COVID-19 pandemic reaching its peak in May 2021 in Taiwan, members of home-based palliative care teams were facing an enhanced risk of contracting COVID-19 during home visits. This article focused on examining how a regional hospital practiced and modified related epidemic prevention measures on a rolling-basis to continue its home-based palliative care services with quality health monitoring and management. Proper training, pre-visit risk assessment, prevention measures and equipment during visit, and post-visit equipment sterilization were implemented in compliance with strict protocols to protect the safety of frontline health workers. When appropriate, audio-video transmission and other technologies were used to expedite timely medical communication and to provide patients and their families with professional guidance concerning hospice care at home. By sharing these experiences, we hope to offer insights beneficial in practicing effective prevention measures for frontline providers of home-based palliative care during an epidemic.&lt;/p&gt; &lt;p&gt;&amp;nbsp;&lt;/p&gt;

The Organization of Home Palliative Cancer Care by Primary Health Care: A Systematic Review Protocol

Greater longevity and chronic diseases, such as cancer, require (re)organization of care for the sustainability of health systems and better quality of life. Palliative care organized by primary health care has positive outcomes, changing standards of care at the end of life, reducing hospitalizations and health costs and contributing to people's autonomy to stay at home with controlled symptoms. However, in many countries, this is not possible because the provision of palliative cancer care is isolated or generalized, concentrated in the hospital, and without the strategic participation of primary care. In many developed countries, where palliative care is offered in an integrated way, home care has increased the people's chances of receiving dignified care at the end of life. The aim of this review is to evaluate the organization of home palliative cancer care by primary care to improve the use of health resources and the quality of life of such patients. This systematic review protocol follows the Cochrane methodology to provide a narrative synthesis, with the resulting report guided by the Preferred Reporting Items for Systematic Reviews (PRISMA).

“Little Seeds of Information”: Perspectives from Home Health Aides and Palliative Care Research Cooperative (PCRC) Community Hospice Partners to Address Information Needs Related to COVID-19 Vaccination (FR222A)

“Little Seeds of Information”: Perspectives from Home Health Aides and Palliative Care Research Cooperative (PCRC) Community Hospice Partners to Address Information Needs Related to COVID-19 Vaccination (FR222A)

A Quiet Home Palliative Care Weekend on Call.

A Quiet Home Palliative Care Weekend on Call.

Handheld Ultrasound (HHUS): Potential for Home Palliative Care

Due to the severity of their disease, palliative care patients often present complex clinical symptoms and complaints like pain, shortness of breath, nausea, loss of appetite, and fatigue. Solely relying on the information available from the history and physical examination often causes uncertainty among palliative care physicians regarding treatment decisions during home visits, potentially leading to unnecessary hospitalizations or transfer to cross-sectional imaging in radiological practices. A rational approach is essential to avoid diagnostic aggressiveness while still providing the imaging information required for optimal palliative care. Bedside use of handheld ultrasound (HHUS) has the potential to expand the diagnostic and therapeutic spectrum in the case of symptom exacerbation but is still underutilized. In this review, we evaluate the potential uses of HHUS in home care settings to provide a more accurate diagnosis of the most common symptoms in palliative patients and to guide bedside interventions such as bladder catheterization, thoracentesis, paracentesis, venous access, and regional anesthesia. Specific training programs for ultrasound in palliative care are currently not available. Adequate documentation is warranted but fraught with technological and privacy issues. Expert supervision and quality assurance are necessary. Despite its limitation and challenges, we suggest that HHUS leads to improved clinical decision-making, expedited symptom relief, and reduced complications without burdening of the patient and costly transfer to hospital or specialty consultations.

Surgical Care Services in inaccessible zones: Targeted Palliative Care Accessibility Models for patients in resource-limited settings.

The coronavirus disease 2019 (COVID-19) pandemic has caused a paradigm shift in the cancer care landscape, shifting from a palliative care approach to a need-based approach. In these current and upcoming future times, patient- and community-centred research becomes the cornerstone of collaborative assessment efforts for understanding and assessing Targeted Palliative Care (TPC) Accessibility Models for patients with oncological malignancies in resource-limited settings. This short communication focuses on the models available for TPC for the continuation of care in oncological settings in resource-limited geographic areas. Some programmes have used a Mixed Method Approach, highlighting their importance based on engagement volunteers and building trust and relationships in the community. Other studies have addressed the care system using a Rural Palliative Supportive Service Model for older adults living with life-limiting chronic illness, showing that home-based treatment for this population is feasible. Moreover, the Home Palliative Care Units (HPCU) model showed promising results in that patients cared for by HPCU had a fewer emergency visits and hospital admissions, in addition to being more likely to die at home with adequate palliation. During the ongoing pandemic, patients have experienced rapid clinical decline, requiring urgent conversations about their care wishes. They have been forced to make decisions on so-called 'Life and death' issues. In this article we discuss the advantages, disadvantages, and possible changes implemented in the context of cancer surgical care in resource-limited settings, in order to create a better assessment of geographic or demographic-based, patient- and community-centred TPC accessibility models for a more holistic development of cancer care programs.

Perceived Value of Pediatric Palliative Care Home Visits by Caregivers and Patients (GP756)

Perceived Value of Pediatric Palliative Care Home Visits by Caregivers and Patients (GP756)