Home-based Palliative Care Services Research Articles

Using the Tasmanian Palliative and End of Life Care Policy Framework (2022) to assess service delivery in a rural general practice.

This commentary uses the Tasmanian Palliative and End of Life Care Policy Framework (2022; the TPE Framework) to reflect upon palliative care services delivered by a rural Tasmanian general practice. Rural populations have challenges in accessing many healthcare services, including palliative care. General practitioners (GPs) and other primary healthcare workers are frequently relied upon to deliver palliative care in rural Australia. Palliative care is often needed before the end-of-life phase and patients prefer this to be delivered in the community or at home. GPs face challenges and barriers in continuing to deliver home-based palliative care services. All Medical Benefit Scheme billings for after-hours or home-based palliative care provided by the practice, between September 2021 and August 2022, were identified and patient demographic and clinical details collated. To further understand this data, nine GPs were surveyed to explore their attitudes to provision of palliative care service to the local rural communities they serve. These data highlighted several priority areas of the TPE Framework. The TPE Framework is used here to add to the shared understanding of palliative care service delivery in a rural community, and to see if GP's responses align with the priorities of the TPE Framework. Of the 258 after-hours and home-visits delivered over a 12-month period, almost 58% (n = 150) were for palliative care. Patients receiving palliative care were generally older than non-palliative patients visited (79.9 years vs. 72.0 years respectively; p = 0.004). Patients not at imminent risk of death (64.0%) were more frequently recipients of home-visits. Of the nine GPs responding to the survey, most intended to continue home visits for palliative patients. Disincentives to providing palliative care during home visits included a lack of time during the day (or after hours), low levels of interdisciplinary coordination or role-definition, and inadequate remuneration. Existing frameworks can be used as an implementation and evaluation guide to help understand local palliative care services. Using a Framework, a rural general practice in Tasmania reflected on their provision of palliative care services. Providing holistic palliative care services from a rural general practice is desirable and achievable with a coordinated, team-based approach. Access to and integration with specialist services remains a key component of community-based palliative care pathways.

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.

The needs of healthcare personnel who provide home-based pediatric palliative care: a mixed method systematic review

BackgroundFamilies with children who have life-limiting or life-threatening illnesses often prefer to receive care at home to maintain a sense of normalcy. However, caring for children at home is different from caring for them in a hospital, and we do not know enough about the needs of healthcare personnel who provide home-based pediatric palliative care.AimThe aim of this review was to systematically summarize, appraise and synthesize available quantitative, qualitative, and mixed methods research to identify the needs of healthcare personnel in home-based pediatric palliative care.MethodsWe used the Joanna Briggs Institute methodology for mixed method systematic reviews and searched systematically in Medline, Embase, PsycINFO, CINAHL, Web of Science, AMED, and the Cochrane Library. Quantitative, qualitative and mixed methods studies from 2012 to 2021 reporting on healthcare personnel’s needs, experiences, perspectives, coping strategies, and/or challenges related to home-based pediatric palliative care were eligible for inclusion. The screening was conducted independently in pairs. The quantitative data were transformed into qualitative data and analyzed using thematic synthesis.ResultsOverall, 9285 citations were identified, and 21 studies were eligible for review. Most of the studies were qualitative and interview-based. Few studies included healthcare personnel other than doctors and nurses. Three analytical themes were developed: (1) being connected and engaged with the child and family, (2) being part of a dedicated team, and (3) ensuring the quality of home-based pediatric palliative care services. Healthcare personnel strived to deliver high-quality, home-based pediatric palliative care. Establishing a relationship with the child and their parents, collaborating within a committed team, and having sufficient resources were identified as important needs influencing healthcare personnel when providing home-based pediatric palliative care.ConclusionThe findings underscore the importance of building trusting relationships among healthcare personnel, children, and families. It also emphasizes the significance of interdisciplinary collaboration that is effective, along with the presence of enough skilled personnel to ensure high-quality home-based pediatric palliative care. Further research is necessary to include healthcare personnel beyond doctors and nurses, as palliative care requires a team of professionals from various disciplines. Addressing the needs of healthcare personnel can ensure safe and professional palliative care for children at home.

Cost Reduction and Utilization Patterns in a Medicare Accountable Care Organization Using Home-Based Palliative Care Services.

Accountable care organizations (ACOs) are often tasked with helping providers to deliver care efficiently and with higher quality outcomes. For an ACO to succeed in delivering efficient care, it is important to direct resources toward patients who exhibit the greatest levels of opportunity while focusing attention toward mitigating their needs. Home-based palliative care (HBPC) services are known to address patient needs for those with serious illness while decreasing the total cost of care (TCC). In this retrospective review, ACO researchers reviewed cost, quality, and utilization patterns for 3418 beneficiaries within a Medicare Shared Saving Program approaching the end of life comparing decedents who received HBPC versus those who did not receive the service. Those individuals who received HBPC services were significantly less likely to be hospitalized (51% reduction in the HBPC group), more likely to use hospice (70% vs. 43%; P = 0.001), and their TCC was less than that of those who did not receive the service ($27,203 vs. $36,089: P = 0.0163). Although more research needs to be done to understand the specific components of care delivery that are helpful in decreasing unnecessary utilization, in this retrospective review in an accountable care population, HBPC is associated with a significant decrease in cost and utilization in a population approaching end of life.

Elaboração de um protocolo de classificação de risco para pacientes oncológicos em Cuidados Paliativos Domiciliares

ABSTRACT Home-based Palliative Care services specialized in the treatment of cancer patients aim to identify and control physical, psychosocial, and spiritual symptoms at home. Some challenges encountered are the complexity of symptoms, reduced survival of patients with advanced cancer, and limitations of the health care system. To stratify the priority of care for patients with advanced cancer in home Palliative Care, a risk classification protocol was developed. This article is an experience report on the process of creating a risk classification protocol for patients with advanced cancer treated at a home Palliative Care service in Rio de Janeiro. The initial stage involved meetings of the home care team at an oncology hospital and structured searches in the literature. Afterwards, the clinical situations of more complex management at home were listed and named as warning signs and symptoms: pain, shortness of breath, nausea/ vomiting, bleeding, and acute mental confusion. An assessment and triage protocol was developed with five categories/colors to determine the priority of patient care. The developed triage system has easy applicability and requires a brief training of the health professional so that it can be used during home visits.

Community and Home Based Palliative Care Services: The Key to Equitable Access to Healthcare Services

Community and Home Based Palliative Care Services: The Key to Equitable Access to Healthcare Services

Some Ethical Concerns About End of Life: A Paradigm Shift From Ars Moriendi to Medicalized Death

Medicine has several goals, including preventing and curing diseases, relieving pain and suffering, and promoting and maintaining the mental and physical health of the person from birth to death. Thanks to medical and technological developments in the last century, medicine has started to provide the opportunity to live longer. However, whether a longer life leads to a better life is debatable. Before these developments, death was regarded as a natural and inevitable end and mostly handled with religious approaches, such as Ars moriendi. However, these medical and technological advances have caused a misleading perception that medicine has the power to achieve every desired outcome. Under the influence and pressure of this misleading situation, people began to demand aggressive treatments, like resuscitation, mechanical ventilation, artificial nutrition and hydration, and chemotherapy. Of course, these medical interventions can be lifesaving for some patients. However, in the case of incurable conditions, such as metastatic cancers, Alzheimer's disease, or advanced organ failure, aggressive treatment methods often fail to produce promising results; on the contrary, they place a variety of burdens on patients, families, and society, as significantly reducing patients' quality of life, causing unrealistic hopes, and exhausting limited health resources. In this context, the article aims to briefly examine the change in people's perception of death and the dying process and to evaluate its de facto and ethical impacts. This study shows that medical and technological breakthroughs have significantly changed people's comprehension, acceptance, and perception of death, which made death no longer a natural end, but a medical failure. In other words, a medical interventions-based death, called medicalized death, has replaced a religion-based death. As a result of this change, the social, spiritual, and emotional aspects of death and the dying process are ignored for the sake of excessive and ineffective medical interventions. This situation brings about a critical shift in where, how, and when to die, and produces various ethical problems regarding the principles of respect for autonomy, non-maleficence, and justice. The present article demonstrates that most people want to die at home and spend their last days with their families. However, due to medical interventions, many die in healthcare facilities while on medical treatments and machines. In this context, this study recommends home-based palliative care services encompassing social, emotional, and spiritual support instead of aggressive medical interventions at end-of-life. Home-based palliative care will enable individuals to spend the last days of their lives at home with their loved ones, receive emotional and spiritual support, and prevent themselves, their families, and society from unnecessary and futile medical expenses. In conclusion, in light of the principles of respect for autonomy, non-maleficence, and justice, in end-of-life issues, medicine should focus on improving patients' quality of life, providing patients with social, emotional, and spiritual support, and ensuring that patients have the opportunity to spend their last days of life with their family members, which can most suitable be achieved through home-based palliative care.

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

<p>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。</p> <p> </p><p>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.</p> <p> </p>

Expert Perspectives on the Additional Benefit of Day Hospices and Palliative Day Care Clinics in Germany: A Qualitative Approach.

Background: In Germany, hospice and palliative care is well covered through inpatient, outpatient, and home-based care services. It is unknown if, and to what extent, there is a need for additional day care services to meet the specific needs of patients and caregivers. Methods: Two day hospices and two palliative day care clinics were selected. In the first step, two managers from each facility (n = 8) were interviewed by telephone, using a semi-structured interview guide. In the second step, four focus groups were conducted, each with three to seven representatives of hospice and palliative care from the facilities' hospice and palliative care networks. Interviews and focus groups were audio recorded, transcribed verbatim and analyzed using qualitative content analysis. Results: The interviewed experts perceived day care services as providing additional patient and caregiver benefits. Specifically, the services were perceived to meet patient needs for social interaction and bundled treatments, especially for patients who did not fit into inpatient settings (due to, e.g., their young age or a lack of desire for inpatient admission). The services were also perceived to meet caregiver needs for support, providing short-term relief for the home care situation. Conclusions: The results suggest that inpatient, outpatient, and home-based hospice and palliative care services do not meet the palliative care needs of all patients. Although the population that is most likely to benefit from day care services is assumed to be relatively small, such services may meet the needs of certain patient groups more effectively than other forms of care.

Symptom Burden and Survival in Patients Receiving Outpatient and Home-Based Palliative Care.

Background: Symptom burden assessment with the Edmonton Symptom Assessment System (ESAS) has been widely studied among patients in outpatient palliative care (OPC), but fewer reports in home-based palliative care (HBPC), and none has assessed the prognostic value of ESAS scores in HBPC. Methods: This retrospective cohort study compares symptom burden and its prognostic value in adult patients receiving OPC and HBPC services between January 1, 2019, and June 30, 2021. Results: Patients completed the ESAS at the first OPC consultation (n = 4086) and at admission to HBPC (n = 4087). OPC patients were younger, more likely to have cancer, less likely to have had a recent hospitalization, and had higher adjusted median ESAS scores (28.1 vs. 22.9) compared with HBPC patients (all p < 0.001). ESAS was prognostic of survival in both settings (Hazard ratio 1.18-1.64, p < 0.01). Conclusion: Symptom burden is an independent prognosticator of survival in HBPC and OPC in this community-based setting.

Mapping of Palliative Care Services and Challenges in Implementation of National Program for Palliative Care in Puducherry.

The purpose of this study was to map ongoing palliative care services and describe the characteristics of providers, recipients, level of care, and approach. Second, it seeks to investigate the difficulties encountered in implementing NPPC in the Puducherry district of UT Puducherry. This study aims to review the challenges in its implementation. The study using both quantitative and qualitative design, including geospatial mapping of organisations, describing service delivery characteristics and exploring challenges faced in implementing NPPC, was conducted from July 2021 to January 2022. In-depth interviews were conducted with seven healthcare providers, four patients and three caregivers, as well as key informant interviews with six doctors in administration. Thirteen organisations providing palliative care to population of Puducherry district of union territory Puducherry and neighbouring districts of Tamil Nadu were identified. Mapped organisations were primarily concentrated in urban areas. Morphine was available only at three medical colleges, providing outpatient palliative care services. Non-governmental organisations provided only home-based palliative care services and the hospices provided both in-patient and home-based services. Key barriers perceived by the health system were difficulty in procuring morphine, inadequate personnel and inadequate funding. Few barriers perceived by patients/family were stigma faced in community, psychological challenges and poor quality of care. Palliative care services are mainly available in urban areas and through private hospices. There is a need to implement palliative care program through the public health system to improve the accessibility in the rural areas.

Home-based palliative care services from the perspective of family caregivers: an evaluation of the Integrated Palliative Care model in Tyrol / Häusliche Palliativversorgung aus der Sicht der pflegenden Angehörigen - eine Evaluation des Modells Integrierte Palliativversorgung in Tirol

Abstract Background Palliative care has always been a field of healthcare in which interprofessional and interdisciplinary cooperation of various healthcare professions is of enormous importance. Home-based palliative care services aim to support family caregivers caring for terminally ill patients at home. Previous studies showed that the quality of collaborative work with palliative services strongly influences the caregivers’ perception of provided services. Purpose This study aimed to investigate how family caregivers experienced the home-based palliative care services “Integrated Palliative Care” (IPB) model in Tyrol. Methods Using a problem-centred interview, 14 former family caregivers were interviewed about their experiences in caring for terminally ill patients supported by IPB services. Interviewees were adult (21+) partners (spouse), daughters/sons, daughters-in-law/sons-in-law or parents of the adult cared-for person living in Tyrol. The transcribed material was subjected to qualitative content analysis. Results The identified overlapping categories were “organization of care”, the “function of professional support as experienced by family caregivers”, “family caregivers’ perception of the quantity and quality of professional help”, and “around death and dying”. Conclusion Our study highlights the importance of efficient collaborative work to enable high standards of palliative care and to decrease caregivers’ burden. Interviewees emphasised the importance of flexible models of palliative care that can address patients’ as well as family caregivers’ needs. Using the avoidance of hospitalization at the end of life and dying in the desired place as criteria to assess the success of home-based care, one can say that the IPB model was successful in the present sample.

Challenges of Integrated Home-Based Palliative Care Services for Cancer Patients during the COVID-19 Pandemic: A Qualitative Content Analysis.

Given the situation of cancer patients as vulnerable patients and the threat of COVID-19 in the society, integration of home-based palliative care services into the healthcare system is essential. The aim of this qualitative study was to explore the current barriers of integration of palliative care services from hospital to home for cancer patients during the COVID-19 Pandemic and to provide suggestions to resolve them. Semi-structured interviews were conducted with 25 stakeholders in the healthcare system, including health policy makers, healthcare providers, clinical home healthcare experts, home healthcare researchers, university faculty members, clergy, family caregivers, and cancer patients. Data were analyzed using directed content analysis method based on the World Health Organization Public Health Strategy for Palliative Care. Challenges were extracted in 4 main categories, containing education barriers (3 subcategories), implementation barriers (9 subcategories), policy barriers (5 subcategories), and drug availability barriers (2 subcategories). Based on the results, removing the barriers and establishing a strong infrastructure for home-based palliative care services is recommended in the healthcare system by concentrating on 4 essential factors, that is, utilizing a coordinating nurse during the process of patient's hospital discharge, establishment of connecting outpatient palliative care clinics to home healthcare centers, access to palliative care tele-medicine and development of a comprehensive and flexible home-based palliative cancer care model in our context.

Satisfaction with care provided by home-based palliative care service to the cancer patients in Dhaka City of Bangladesh: A cross-sectional study.

Patient satisfaction is an important quality indicator of health care service. The concept of home-based palliative care has been recently introduced in Bangladesh, but the patients' satisfaction with this care remained unexplored. This study aimed to assess the satisfaction of the cancer patients receiving this care. This cross-sectional study was conducted among 51 surviving cancer patients above 18 years of age registered under the home-based care service of the Department of Palliative Medicine, Bangabandhu Sheikh Mujib Medical University, Dhaka, Bangladesh. Data were collected by face-to-face interviews using a structured questionnaire based on the FAMCARE P16 questionnaire from February to March 2019. Descriptive analysis was done for the sociodemographic and satisfaction-related indicators. A correlation matrix was done to see the correlation among the satisfaction indicators. The majority of the patients (88.2%) were satisfied with the service provided by the home care team. Most (76.5%) of the patients were women, and the mean age was 56.25 ± 14.8 years. The median duration of getting home-based care was 4 months. Main satisfaction indicators were-assessment of physical symptoms (70.6%), providing information about pain management (70.6%), the inclusion of the family in decision making (76.5%), coordination of care between the members of the home care team (84.3%) and availability of doctors, nurses and palliative care assistants (74.5%). A high correlation was observed between satisfaction regarding the care of physical symptoms and provision of information (R = 0.814, p < 0.001). Also, satisfaction regarding the provision of information and support provided to the family is highly correlated (R = 0.722, p < 0.001). Despite the limitations, the overall satisfaction level of the patients regarding home-based palliative care services in Bangladesh is very high. Home-based palliative can be a solution to provide palliative care to patients who are unable to access institution-based care and improve their quality of life.

Feasibility of a Palliative Care Intervention Utilizing Community Health Workers to Facilitate Delivery of Home-based Palliative Care in India

Objectives:The purpose of this study was to evaluate the feasibility of a home-based palliative care program delivered by community health workers (CHW) in rural areas outside of Kolkata, India. The specific aims were to assess CHWs’ ability to implement the intervention protocol and maintain records of care, to characterize patient problems and CHW activities to assist patients, and to assess change in patient pain scores over the course of the intervention.Materials and Methods:Four CHWs were hired to facilitate delivery of home-based palliative care services. CHWs were trained using the Worldwide Hospice and Palliative Care Alliance’s Palliative Care Toolkit. CHWs provided care for patients for 3-months, making regular home visits to monitor health, making and implementing care plans, and referring patients back to the cancer center team for serious problems.Results:Eleven patients enrolled in the intervention, with ten of these patients participating in the intervention and one patient passing away before starting the intervention. All ten participants reported physical pain, for which CHWs commonly recommended additional or higher dose medication and/or instructed patients how to take medication properly. For two patients, pain levels decreased between baseline and end of study, while pain scores did not decrease for the remaining patients. Other symptoms for which CHWs provided care included gastro-intestinal, bleeding, and respiratory problems.Conclusion:The study findings suggest that utilization of CHWs to provide palliative care in low-resource settings may be a feasible approach for expanding access to palliative care. CHWs were able to carry out the study visit protocol and assess and document patient problems and their activities to assist. They were also able to alleviate many common problems patients experienced with simple suggestions or referrals. However, most patients did not see a decrease in pain levels and more emphasis was needed on the emotional aspects of palliative care, and so CHWs may require additional training on provision of pain management and emotional support services.

Understanding Long-Term Outcomes of Public Health Strategy in Palliative Care at Micro Level: Impact of Home-Based Palliative Care Services under Local Self-Government Institutions in Kerala, India.

Objectives:Palliative care units under Local Self-Government Institutions (LSGIs) are increasing in number in the state of Kerala, India, since the announcement of the Pain and Palliative Care Policy, 2008. Whether these units are functioning with a view to materialise the long-term objectives, following the guidelines stipulated by the Government of Kerala and serve the neediest patients with quality care are a matter of debate. Hence, a microlevel study of the palliative care unit is attempted. The aims of the study were to understand the extent to which the structure and nature of functioning of the Pain and Palliative Care Unit under LSGI comply with guidelines set by the Pain and Palliative Care Policy of the Government of Kerala and to check whether the palliative care services are reaching the needy and, if so, are they provided to patients in good quality.Materials and Methods:The award winning Pain and Palliative Care Unit attached to LSGI is selected for analysis and a hybrid research design is followed. Data are collected from 25 patients and their caregivers selected randomly. Mean score of satisfaction level on the basis of Quality care questionnaire -Palliative care is used.Results:Sample unit complies with the revised guidelines of 2015, Pain and Palliative Care Policy. It serves the neediest patients and the quality of care is satisfactory.Conclusion:The study reaffirms the strength of the public health model in palliative care which can provide quality care to the neediest patients.

Reluctance to Accept Palliative Care and Recommendations for Improvement

Although insurance companies are increasingly paying for home-based palliative care (HBPC), enrollment remains low. To identify patient and caregiver perceived barriers to HBPC and their recommendations for overcoming these barriers, we conducted semi-structured individual interviews. Our interview protocol elicited participants’ perspectives on HBPC services; positive and negative aspects of the palliative program explanation; and suggestions for improving HBPC messaging. Seventeen patients and eight caregivers who were eligible for a randomized controlled trial of HBPC were interviewed. Themes related to HBPC referral barriers included reluctance to have home visits, enrollment timing, lack of palliative care knowledge, and patients’ self-perceived health condition. Themes related to recommendations for overcoming these obstacles included ensuring that HBPC referrals come from healthcare providers or insurance companies and presenting HBPC more clearly. Findings reinforce the need for palliative care education among seriously ill patients and the importance of delivering palliative care information and referrals from trusted sources.

Development of a model of Home-based Cancer Palliative Care Services in Mumbai - Analysis of Real-world Research Data over 5 Years.

Patients needing palliative care prefer to be cared for in the comfort of their homes. Although private home health-care services are entering the health-care ecosystem in India, for the majority it is still institution-based. Here, we describe a model of home-based palliative care developed by the Tata Memorial Hospital, a government tertiary care cancer hospital. Data on patient demographics, services provided and outcomes were collected prospectively for patients for the year November 2013 - October 2019. In the 1st year, local general physicians were trained in palliative care principles, bereavement services and out of hours telephone support were provided. In the 2nd year, data from 1st year were analysed and discussed among the study investigators to introduce changes. In the 3rd year, the updated patient assessment forms were implemented in practice. In the 4th year, the symptom management protocol was implemented. In the 5th and 6th year, updated process of patient assessment data and symptom management protocol was implemented as a complete model of care. During the 6 years, 250 patients were recruited, all suffering from advanced cancer. Home care led to good symptom control, improvement of quality of life for patients and increased satisfaction of caregivers during the care process and into bereavement. A home-based model of care spared patients from unnecessary hospital visits and was successful in providing client centred care. A multidisciplinary team composition allowed for holistic care and can serve as a model for building palliative care capacity in low- and middle-income countries.

Predictors of the final place of care of patients with advanced cancer receiving integrated home-based palliative care: a retrospective cohort study

BackgroundMeeting patients’ preferences for place of care at the end-of-life is an indicator of quality palliative care. Understanding the key elements required for terminal care within an integrated model may inform policy and practice, and consequently increase the likelihood of meeting patients’ preferences. Hence, this study aimed to identify factors associated with the final place of care in patients with advanced cancer receiving integrated, home-based palliative care.MethodsThis retrospective cohort study included deceased adult patients with advanced cancer who were enrolled in the home-based palliative care service between January 2016 and December 2018. Patients with < 2 weeks’ enrollment in the home-based service, or ≤ 1-week duration at the final place of care, were excluded. The following information were retrieved from patients’ electronic medical records: patients’ and their families’ characteristics, care preferences, healthcare utilization, functional status (measured by the Palliative Performance Scale (PPSv2)), and symptom severity (measured by the Edmonton Symptom Assessment System). Multivariate logistic regression was employed to identify independent predictors of the final place of care. Kappa value was calculated to estimate the concordance between actual and preferred place of death.ResultsA total of 359 patients were included in the study. Home was the most common (58.2%) final place of care, followed by inpatient hospice (23.7%), and hospital (16.7%). Patients who were single or divorced (OR: 5.5; 95% CI: 1.1–27.8), or had older family caregivers (OR: 3.1; 95% CI: 1.1–8.8), PPSv2 score ≥ 40% (OR: 9.1; 95% CI: 3.3–24.8), pain score ≥ 2 (OR: 3.6; 95% CI: 1.3–9.8), and non-home death preference (OR: 23.8; 95% CI: 5.4–105.1), were more likely to receive terminal care in the inpatient hospice. Patients who were male (OR: 3.2; 95% CI: 1.0–9.9), or had PPSv2 score ≥ 40% (OR: 8.6; 95% CI: 2.9–26.0), pain score ≥ 2 (OR: 3.5; 95% CI: 1.2–10.3), and non-home death preference (OR: 9.8; 95% CI: 2.1–46.3), were more likely to be hospitalized. Goal-concordance was fair (72.6%, kappa = 0.39).ConclusionsHigher functional status, greater pain intensity, and non-home death preference predicted institutionalization as the final place of care. Additionally, single or divorced patients with older family caregivers were more likely to receive terminal care in the inpatient hospice, while males were more likely to be hospitalized. Despite being part of an integrated care model, goal-concordance was sub-optimal. More comprehensive community networks and resources, enhanced pain control, and personalized care planning discussions, are recommended to better meet patients’ preferences for their final place of care. Future research could similarly examine factors associated with the final place of care in patients with advanced non-cancer conditions.

Adaptations to palliative home care in India in a COVID pandemic: An experiential narrative

India is in the midst of a fierce pandemic with a rapid surge of cases and the health-care system in a quandary. Care of patients with life-limiting illness needing palliative care has been compromised due to limitations in palliative care access and a paradigm shift in the hospital toward care of COVID. Therefore, it is imperative to augment the home-based services so that patients continue to remain at home with their care needs met so that their access to hospitals is restricted for acute and complex needs. To overcome practical aspects of home-based care service delivery, several adaptations were needed. An urban standalone home-based palliative care service provider made adaptations to personal protection, personal protection equipment, and team self-care that facilitated an effective service delivery and satisfaction.