Palliative Care Support Research Articles

Delay Determinants in Seeking Cervical Cancer Treatment and Economic Burden among Patients at Selected Facilities in Imo State

Background: Cervical cancer is an important public health problem worldwide. In Nigeria women seeking cancer treatment see cost of uptake as a challenge. The objective of this study is to determine the determinants of delay in seeking cervical cancer treatment and economic burden among patients at selected facilities in Imo state. Methods: A hospital based descriptive cross sectional study was employed and a probability based multi-stage simple random sampling procedure was employed for the study in recruiting a total of 302 patients who participated in the study. A pretested structured questionnaire was used and statistical package for social sciences version 23.0 was used in the analysis of the study. Results: 32.6% (98) of the respondents were between 56-60 years of age and 19.5% (59) earned between ₦31,000-₦60,000. 57.1% of the women accepted to uptake cervical cancer treatment and 62.8% of the respondents confirmed they can afford to uptake cervical cancer treatment options. The study revealed that 26.7% of the women were able to afford supportive palliative care as a form of cervical cancer treatment. There was a statistically significant relationship between age (χ2 =12, df=4, p= 0.0035), occupation (χ2 = 0.321, df=5, p=0.00275), income level (χ2 = 8.57, df=3, p=0.0092), education level (χ2 = 17, df=2, p=0.0327) and uptake of cervical cancer treatment. Also, financial constraints (p=0.0031), attitude of health providers (p=0.0074), distance to facility (p=0.0015) and lack of information (p= 0.0038) showed significant association with the economic cost towards seeking cervical cancer treatment. Conclusion: Several demographic and economic factors contribute to the determinants of delay in seeking cervical cancer treatment and economic burden among patients at selected facilities in Imo state. Awareness campaigns must provide accurate information so that women can make informed choices.

Attitude toward care of the dying and practice of peaceful end-of-life care in community hospitals in China.

To evaluate nurses' attitude toward caring for dying patients, their practice of peaceful end-of-life care in community hospitals, and the association between these two variables. Community hospitals play an important role in the peaceful end-of-life care. For nurses, one of the key points of offering high-level care is to improve attitude. However, there are very few studies exploring how the attitude of nurses toward caring for dying patients relates to the practice of peaceful end-of-life care in community hospitals across China. A total of 363 questionnaires were included in this study. Simple random sampling was used to recruit participants from six community hospitals in China. A new instrument, Nurses' Practice of Peaceful End-of-Life Care Instrument (NP-PECI), was developed according to the Theory of Peaceful End of Life to assess the practice of nurses. Besides, Frommelt Attitudes toward Care of the Dying (FATCOD) was adopted to assess nurses for their attitude toward caring for dying patients. The nurses' attitude toward caring for dying patients showed a significant positive correlation with their practice of peaceful end-of-life care statistically (r=0.175, p<0.01). For community nurses, it is necessary to improve the attitude of nurses toward the practice of caring for dying patients, thus enhancing the outcome of peaceful end-of-life care. The Theory of Peaceful End of Life provides a theoretical framework and guideline on the practice of clinical nursing for quality control of peaceful end-of-life care, which is significant for improving the palliative care system. In the future, it is worth developing programs based on the Theory of Peaceful End of Life. For healthcare policy makers, this study can be helpful to refine the existing palliative care support policies and strategies targeted at community hospitals and their nurses.

Report of the First Conference in Zielona Góra: Palliative medicine, supportive care and pain management in patients with non-cancer diseases

Report of the First Conference in Zielona Góra: Palliative medicine, supportive care and pain management in patients with non-cancer diseases

How Do Kidney Disease Clinicians View Kidney Supportive Care and Palliative Care? A Qualitative Study

Kidney supportive care (KSC) is a developing area in medicine that integrates the expertise of kidney and palliative care practitioners to improve symptoms and quality of life for people with advanced kidney disease. The intersection of the practical aspects of KSC (including care activities and clinical referrals) with palliative and end-of-life care (EOLC) are largely unknown. The aim of this study was to explore kidney disease clinicians' experiences of KSC, palliative care, and EOLC. An exploratory qualitative study using semistructured focus groups. Kidney disease clinicians (18 physicians, 3 trainees, and 33 kidney disease nurses) from 5 public hospitals were recruited across Victoria, Australia. Thematic analysis of focus group transcripts. The 2 overarching themes highlighted by clinicians were their perception that their health care systems insufficiently addressed the needs of people with advanced kidney disease, as well as their aspirations to develop KSC services to improve health care experiences. Three subthemes were identified related to limitations in health care systems: (1) variation in the clinical scope of KSC, (2) limited integration of palliative care, and (3) experiences of challenging and compromised provision of EOLC. The second theme described aspirations for future KSC services to be more inclusive, seamless, and collaborative across health care providers with capacity to respond to meet changing palliative care needs. Findings may not be transferable to contexts outside of Victoria, Australia; data were collected in 2017-2018 and may not reflect current or future experiences. Kidney clinicians described systemic challenges and compromises in care experiences and the need for development of KSC services. They expressed that this development would require a consistent and systematic approach that integrates palliative care and embeds KSC as part of kidney health service delivery.

Best Supportive Care of the Patient with Oesophageal Cancer.

Oesophageal cancer patients have poor survival, and most are unfit for curative or systemic palliative treatment. This article aims to review the best supportive care for oesophageal cancer, focusing on the management of its most frequent or distinctive symptoms and complications. Evidence-based review on palliative supportive care of oesophageal cancer, based on Pubmed search for relevant clinical practice guidelines, reviews and original articles, with additional records collected from related articles suggestions, references and societies recommendations. We identified 1075 records, from which we screened 138 records that were related to oesophageal cancer supportive care, complemented with 48 additional records, finally including 60 records. This review summarizes the management of oesophageal cancer-related main problems, including dysphagia, malnutrition, pain, nausea and vomiting, fistula and bleeding. In recent years, several treatments have been developed, while optimal management is not yet standardized. This review contributes toward improving supportive care and decision making for oesophageal cancer patients, presenting updated summary recommendations for each of their main symptoms. A robust body of evidence is still lacking, and the best supportive care decisions should be individualized and shared.

Infant Maternal Perinatal Advanced Care Team: A Pilot Collaboration for Families Facing a Life-Threatening Fetal Diagnosis.

Background: The Infant Maternal Perinatal Advanced Care Team program was launched in 2018 to enhance perinatal palliative care services in Toronto, Canada. Methods: Pilot patients were (1) carrying a fetus with a life-limiting diagnosis and (2) receiving care at the high-risk fetal center. Individualized care included opportunities for establishing goals, labor/delivery planning, grief support, and pediatric palliative care support. Results: A total of 107 patients were included during the two-year clinical pilot program. Of those who continued their pregnancy, 45% had care goals focused on comfort while 55% had goals focused on life prolongation. A significant proportion in both groups experienced a fetal or neonatal death. For babies who received comfort-focused care, one-third were transferred to hospice or home. Conclusions: A comprehensive perinatal palliative care pathway ensures that more families receive options of pre- and postnatal palliative care supports in varied circumstances where there is significant risk of fetal and neonatal mortality.

Characteristics of good home-based end-of-life care: analysis of 5-year data from a nationwide mortality follow-back survey in England.

Recently, there has been an emphasis on providing good-quality end-of-life care; however, little is known about it and its determinants for patients living at home. To determine what characterises good-quality end-of-life care for patients living at home. An observational study using 5-year data from the National Survey of Bereaved People (Views of Informal Carers - Evaluation of Services [VOICES]) in England. Analysis was based on data for 63 598 decedents, who were cared for at home in the last 3 months of life. Data were drawn from 110 311 completed mortality follow-back surveys of a stratified sample of 246 763 deaths registered in England between 2011 and 2015. Logistic regression analyses were used to identify independent variables associated with overall quality of end-of-life care and other indicators of end-of-life care quality. Patients who received good continuity of primary care (adjusted odds ratio [AOR] 2.03; 95% confidence interval [CI] = 2.01 to 2.06) and palliative care support (AOR 1.86; 95% CI = 1.84 to 1.89) experienced better overall quality of end-of-life care than those who did not, as perceived by relatives. Decedents who died from cancer (AOR 1.05; 95% CI = 1.03 to 1.06) or outside of hospital were more likely to receive good end-of-life care, as perceived by relatives. Being older, female (AOR 1.16; 95% CI = 1.15 to 1.17), from areas with least socioeconomic deprivation, and White (AOR 1.09; 95% CI = 1.06 to 1.12) were associated with better overall end-of-life care, as perceived by relatives. Better quality of end-of-life care was associated with good continuity of primary care, specialist palliative care support, and death outside of hospital. Disparities still exist for those from minority ethnic groups and those living in areas of socioeconomic deprivation. Future commissioning and initiatives must consider these variables to provide a more-equitable service.

Supportive Care and Palliative Care for Lung Cancer in Long-term Survival Era

Supportive Care and Palliative Care for Lung Cancer in Long-term Survival Era

If not home, where? Implementing an innovative model of care as an alternative place of care & death for patients living in an area of high socio-economic deprivation. Short-report on opening a long-term palliative care unit

Background: Healthcare professionals and policy makers often view home as the most appropriate place of care and death for patients. However, this makes assumptions about what home is like and does not account for high levels of complexity experienced by patients from areas of high socioeconomic deprivation. Alternative models of care should be explored to provide equitable care for this patient group. Aims: To describe the development of a new innovative model of care, a long-term palliative care unit. Design: Description of the model, with secondary analysis of retrospective routinely gathered data. Setting: Hartlepool in North-East England, includes some of the most socio-economically deprived areas in England, with associated high-levels of multimorbidity. In 2014, the eight-bedded hospice, opened an additional 10-bedded long-term unit. Results: Within 7 years, 199 patients were admitted to the long-term unit. With 98% remained there until death. All patients were offered a full holistic assessment and advance care planning, with 24/7 access to specialist palliative care support. None were transferred to hospital. In general, patients from socio-economically deprived areas are less likely to access hospice care, however, 27% of all admissions to the long-term unit were from areas in the 10% most deprived in England (with 41% admitted from areas in the poorest quintile). Conclusion: We suggest that this model has been a valuable asset in providing an alternative place to home, enabling patients to receive high-quality care towards end of life. Further research is needed to hear directly from patients about their experiences.

What Should Good Bereavement Support in Palliative Care Look Like?: Findings from workshop group discussions

Introduction: There is a lack of consistency in approaches to bereavement support provision and evaluation. This study identified outcomes for adult bereavement support in palliative care, involving a workshop with people from professional and lived experience backgrounds, providing a view on what support interventions should look like.&#x0D; Aims: The aims of the workshop were to gather stakeholder views on the purpose and impacts of bereavement support and what outcomes should be used in the design and evaluation of bereavement interventions and services. &#x0D; Methods: Stakeholders were divided into three groups and asked to identify and discuss how support services should help bereaved service users and what good bereavement support looks like. Key themes were identified from the written and verbal content of the consensus day.&#x0D; Findings: Three main themes emerged from the data; informal support and self-management; the aims and purpose of formal bereavement service support and the timing, accessibility and quality of support.&#x0D; Conclusion: Workshop findings align with public health models of bereavement care and recent service standards, identifying core support functions and aspirations for bereavement services. Finding the best mechanisms and modalities for meeting these, in the context of the late/post-pandemic period, presents both challenges and opportunities.

Organ Donation and End-of-Life Discussions: A Scripting Template for Supportive Palliative Care.

This article describes the importance of introducing donation after circulatory death during discussions about the withdrawal of life-sustaining treatment and provides a scripting template to facilitate these discussions, developed by a multidisciplinary team of stakeholders.

A task service and a talking service: A qualitative exploration of bereaved family perceptions of community nursing care at the end of life

Background: Greater emphasis on community-based care at the end of life is supported by the premise that most people want to be cared for and die at home. As such, it is important to understand the current state of palliative care nursing within an integrated generalist-specialist model of care in the community. Aim: To explore bereaved family perceptions and experiences of community nursing at the end of life, with a particular focus on service integration. Design: A qualitative study design using semi-structured telephone interviews with bereaved family. A critical realist framework was used to inform the analysis of interview data and thematic analysis of data was used to identify key themes. Setting/participants: Participants were the family carers of patients who had died within the catchment area of two large District Health Boards in Auckland, New Zealand. Results: Twenty-three participants were interviewed. Participants described their experiences of community nursing in terms of the service they provided. Hospice nursing roles were described in terms of a “talking service” and District Nursing as a “task service.” There was minimal expectation of the general practice nurse in terms of palliative care support and little evidence of service integration. Conclusion: Findings from this study support the need for a new integrated model of palliative care nursing which utilizes the unique skill set of nurses working across all community care settings including general practice, hospice and district nursing services. Accommodating different models of nursing care which can be responsive to patient need rather than limited to a defined service delivery model.

Improving the Integration between Palliative Radiotherapy and Supportive Care: A Narrative Review.

Palliative radiotherapy (PRT) is known to be effective in relieving cancer related symptoms. However, many studies and clinical practice show several barriers hindering its use and worsening the quality of patient support during PRT. Various solutions were proposed to overcome these barriers: training on PRT for supportive and palliative care specialists and training on palliative care for radiation oncologists, and introduction of pathways and organizational models specifically dedicated to PRT. Evidence on innovative organizational models and mutual training experiences is few and sparse. Therefore, the aim of this literature review is to present a quick summary of the information available on improving the PRT quality through training, new pathways, and innovative organizational models. The majority of studies on the integration of PRT with other palliative and supportive therapies present low levels of evidence being mostly retrospective analyses. However, it should be emphasized that all reports uniformly showed advantages coming from the integration of PRT with supportive therapies. To actively participate in the integration of PRT and palliative care, providing comprehensive support to the needs of patients with advanced cancer, radiation oncologists should not only plan PRT but also: (i) assess and manage symptoms and stress, (ii) rapidly refer patients to specialists in management of more complex symptoms, and (iii) participate in multidisciplinary palliative care teams. To this end, improved education in palliative care both in residency schools and during professional life through continuous medical education is clearly needed. In particular, effective training is needed for radiotherapy residents to enable them to provide patients with comprehensive palliative care. Therefore, formal teaching of adequate duration, interactive teaching methods, attendance in palliative care services, and education in advanced palliative care should be planned in post-graduated schools of radiotherapy.

Palliative and Hospice Care in Nursing Homes: Discrepancies Between Theoretical Framework and Everyday Practice

Despite the existence of a legislative framework, palliative care and hospice support in nursing homes vary widely. Although most nursing homes have palliative care concepts by now, they are rarely integrated into everyday practice. This study aims to examine differences in palliative and hospice care and to determine the causes of discrepancies between theoretical framework and everyday practice. Based on a pilot project, in depth structural and process analyses of two nursing homes in urban and rural areas in North Rhine-Westphalia were conducted. In addition, three nursing homes of an extended group of providers as well as an expert advisory board was included to minimize (provider-) specific characteristics and to expand findings. Although the proportion of palliative residents and their average age was comparable, analyses revealed significant differences between the nursing homes regarding the palliative length of stay (213.2 days vs. 88.6 days) as well as the mortality rate of palliative residents among all death cases (26% vs. 63.6%). Furthermore, internal processes within the nursing homes differed vastly despite similar concepts and procedural instructions. As a result, palliative care formally started at an earlier stage in nursing home X. Besides that, the identification of palliative care situations, as well as communication, organizational processes and the inclusion of cooperation partners, took place without fixed structures and was based on the subjective handling of staff members in both facilities. It turns out to be challenging for nursing homes to implement theoretical framework into everyday practice. To facilitate this process, aside from practicable assessments, defined responsibilities and organizational support, financing concepts at health policy level need to be established.

The Business Case to Care for Persons With Serious Illness Using Home-Based and Community-Based Palliative Care.

The number of persons with serious illness in America has dramatically increased over the last half decade, while the cost for health care quadrupled. The trajectory of these chronic conditions can mean declining health, frequent emergency department visits and more hospitalizations, driving up health care costs, and reducing quality of life. Palliative care, a viable solution to reducing disease burden, improving quality of life, and decreasing costs, has been offered in hospitals for many years and is now a standard of care and practice. Palliative care can be provided while concomitantly offering disease-targeted treatment. Home-based and community-based palliative care models offer new and innovative avenues for the provision of palliative care outside the hospital walls. Definitions to differentiate between palliative care, hospice, and long-term services and support will be presented. How to make the business case for home-based or community-based palliative care will be made, with insights, resources, and tools for calculating the return on investment. The role and competencies for palliative care nurse leaders will be explored.

Retrospective Review of Carcinomatous Meningitis Management at a Tertiary Centre: Reflections on Current and Future Management

Abstract AIMS Carcinomatous meningitis (CM) arises following metastatic deposition of neoplastic cells in the meninges triggering a complex series of pathological changes, typically representing a terminal complication of underlying malignancy. No uniform management strategy exists for CM patients, despite research highlighting numerous treatment modalities. We present a single centre retrospective study of CM patients managed over a ten year period, along with analysis of current and future treatment modalities for CM. METHOD Patient datasets were identified using diagnostic codes. Inclusion criteria were patients with malignant cells identified in CSF, or those with radiological features consistent with CM with a background of cancer and supporting clinical features. Data regarding patient symptomatology, management, and outcome were then gathered from electronic patient records. RESULTS Ten cases of carcinomatous meningitis were identified. The most common primary tumour site was breast (30%). The most common presenting symptoms were headache (70%), weakness (60%), vomiting (50%), and confusion (50%). Radiological evidence of CM in the form of leptomeningeal enhancement was noted in 60% of cases. Management of CM cases was variable – six patients underwent no further anti-cancer treatment, two patients underwent chemotherapy, and two patients were planned for radiotherapy. Median length of survival from time of CM diagnosis was 30 days (IQR 15 – 63). CONCLUSION CM patients have a poor prognosis, and significant variability exists in management. New therapeutic options are emerging, particularly in the field of targeted biologic therapies, and engagement with specialist oncology teams is recommended. Early palliative care support is essential in the management of CM patients.

Differences in the utilization of palliative care support services among patients with metastatic solid tumor cancer in a community oncology setting: A retrospective review.

82 Background: Palliative care has been underutilized in the setting of advanced cancer despite its established benefit in improving the quality of life in cancer patients. Few studies have evaluated socioeconomic disparities in receiving palliative care in the outpatient oncology setting. We aimed to evaluate for disparities in utilization of palliative care among patients with metastatic solid tumor malignancies at Tennessee Oncology, a large outpatient community oncology practice with an established palliative care program. Methods: We completed a retrospective review of medical records of 1513 patients that were seen in Tennessee Oncology clinics from 12/2020 to 12/2021. We compared the baseline characteristics of patients with metastatic solid tumor malignancies who did and did not receive palliative care. Chi-square and two-sample t-tests were used for data analysis with the 5% significance level using R statistical software. Results: Male patients utilized palliative care less often than female patients (17% versus 24% for females, p =.0002; 95% CI,.05-1.0). Of payer types, Medicare had the least palliative care utilization (14%) compared to commercial (25%) and other payers (23%). Utilization also varied by cancer type, with melanoma (9%), lung cancer (15%) and renal cancer (21%) being least likely to receive palliative care (p &lt;.00005; 95% CI,.19-1.0). We did examine racial differences in palliative care utilization, but those did not reach statistical significance. Conclusions: There are multiple disparities in the utilization of on-site palliative care support services among patients with metastatic solid tumor cancer in this outpatient community oncology setting. Further research is needed to gain insight into why this is, including an in-depth analysis of both patient and provider utilization/referral practices.[Table: see text]

The practice of palliative care clinical nurse specialists in the care of cancer patients in the State of Qatar

Background and objective: There is an annual increase in the number of metastatic advanced cancer patients who require palliative care; this is paralleled by the necessary increase in the workload of palliative care Clinical Nurse Specialist (CNS). Palliative care CNSs are crucial members in the palliative care multidisciplinary team. The aim of this paper is to describe the role of clinical nurse specialists by clarifying the ambiguity of their responsibilities in advanced cancer patients' care in the state of Qatar.Methods: Data used in this descriptive study were extracted from a shared Excel data registry system that has been created by palliative care CNSs. Data were retrieved from the 1st of January 2021 till the 31st of December 2021 and translated into numbers and percentages. Results: A total of 3,571 patients' encounters were captured starting from the 1st of January 2021 till the 31st of December 2021. National Center for Cancer Care and Research (NCCCR) inpatient's encounters (33%), followed by telephone consultations (32%) were the highest two approaches to palliative care services delivered by CNSs. Pain and non-pain symptoms management, early introduction to palliative care, patient and family education and support, end-of-life care, and coordination of care with other health care professionals are few examples of the other services offered by palliative care CNSs for cancer patients at Hamad Medical Corporation (HMC).Conclusions: Palliative care CNSs’ roles are multidimensional and highly needed. Some of their clinical activities are unnoticed, especially due to the high number of patients’ encounters and the different geographic locations at HMC that CNSs cover. Future research is highly needed to describe the role of palliative care CNSs in areas, such as research, education, and leadership.

436. DIFFERENCES IN MULTIDISCIPLINARY TEAM ASSESSMENT ON ESOPHAGEAL CANCER PATIENTS IN SWEDEN—A MULTICENTRE STUDY

Abstract There are differences in esophageal cancer care across different counties in Sweden. According to national guidelines, all patients should be offered equal care which should be administrated by regional multidisciplinary cancer conferences (MCCs). The aim of the study was to investigate differences between the six regional MCCs in Sweden regarding clinical stageing and recommended treatment. Ten consecutive cases per participating center, 60 cases in total, were planned for inclusion. After anonymization the radiological investigations were presented, along with the original case-specific medical history, anew at the six regional MCCs. Estimation of clinical TNM and treatment allocation (curative, palliative or best supportive care) were compared between MCCs as well as with the original assessment. Interim analysis was performed in April 2022 when ten cases had been presented at five of the six regional MCCs. All available cases were assessed at five MCCs in addition to the previous original assessment (60 assessments). The mean age for the first ten cases was 74.8 years (SD ± 9.8 years). Eight out of ten cases were men. In estimations of T- and N-stage the MCCs agreed in only one out of ten cases. In half of the cases more than three different estimations of N-stage were made. For clinical M-stage there was exact agreement in three cases. In determination of recommended treatment, all five MCCs were in agreement on half of the cases. Preliminary data show striking differences, both in assessment of TNM as well as treatment recommendation at different MCCs. One patient, recommended curative treatment by one MCC could be allocated to palliative care by another. Inclusion is ongoing and further analysis of these differences are warranted to achieve more equal care for esophageal cancer patients in Sweden. MCC_fig1.jpg (could not be inserted).

Quality of end-of-life care with non-malignant liver disease: Analysis of the VOICES National Survey of Bereaved People.

Patients with liver disease struggle to access palliative care. We aimed to compare carers' perceptions of end-of-life care for decedents with non-malignant liver disease, malignant liver disease and other non-malignant diseases, and to identify associated factors in non-malignant liver disease. A retrospective analysis of individual-level data from the National Survey of Bereaved People 2011-2015. More decedents with non-malignant liver disease died in hospital than other diseases (76.9% vs. 40.9% vs. 50.2%, p< .001), despite 89% wishing to die at home. Fewer decedents received home/hospice specialist palliative care compared with those with malignant liver disease (10.0% vs. 54.6%, p< .001). Carers of decedents with non-malignant liver disease were less likely to rate overall end-of-life care quality as outstanding/excellent (29.3% vs. 43.9% vs. 42.3%, p< .001). For this group, poorer care was associated with younger (65-74 vs. 18-64 years, OR [odds ratio] 1.39, p= .01), more socially deprived decedents (OR .78, p= .02), and better care with greater social support (OR 1.82, p< .001) and community specialist palliative care involvement (OR 1.80, p< .001). There was no association between outstanding/excellent rating and underlying cause of non-malignant liver disease (alcohol-related vs. non-alcohol-related, p= .92) or place of death (hospital vs. non-hospital, p= .476). End-of-life care could be improved by integrating hepatology and community services, particularly specialist palliative care, and advance care planning to facilitate care and death (where desired) at home. However, death in hospital may be appropriate for those with non-malignant liver disease.