Palliative Care Support Research Articles

Mapping the clinical care pathways for advanced stage non-small cell lung cancer patients in Victoria: A retrospective cohort study of supportive and palliative care.

The lung cancer Optimal Care Pathway recommends supportive care and palliative care integration throughout its various steps, with early referral to appropriate services improving the quality of life in advanced stage non-small cell lung cancer patients. Using Victorian Lung Cancer Registry data and linked administrative datasets, this retrospective cohort study mapped clinical care pathways of 525 Stage III-IV non-small cell lung cancer patients in Victoria to 11 recommendations in the Optimal Care Pathway, identifying unwarranted variations in clinical care. Supportive care and palliative care delivery were further examined to understand the involvement and timing of specialist care teams. Our findings showed that palliative care utilization is highest at the time of treatment, despite recommendations that it should be provided early after diagnosis to improve patient outcomes and satisfaction. Early supportive care screening was observed in half the cohort and almost three-quarters of the patients had been presented at a multidisciplinary meeting. Multidisciplinary meeting presentations and supportive care provide an opportunity to improve communication about palliative care needs and integration into routine clinical practice, such as at the time of treatment planning.

Transition from intensive care to palliative care : A retrospective analysis of 102 consultation requests

The transition of patients from the intensive care unit (ICU) to the palliative care (PC) ward often implies changes including establishing apalliative concept. Adaptation of therapeutic goals can be challenging for medical staff, patients and relatives; however, descriptions of these transition trajectories are rare. The aim of this retrospective study was to characterize the consultation requests of the ICU to the PC consultation team as well as the patients by a description of trajectories and interventions. Retrospective analysis of all patients receiving intensive care at RWTH Aachen University Hospital in 2019 for whom aPC consultation was requested. The patient population transferred from the ICU to the PC ward was compared with the non-transferred population. In each case, the primary consultation was evaluated regarding the following factors: question, vigilance, length of time from consultation request to its performance, and primary focus of the question. The question focus was categorized into "symptom control", "counselling" and "transfer" (tick options). In addition, afree text field was available for further notes. Exploration of diagnoses was complemented by accessing the electronic health records. A total of 102 consultation requests from the ICU to the PC ward were evaluated. The morbidity of patients was high, and most patients had at least one of the following diagnoses: pulmonary (62%), cardiovascular (61%), and/or neurological disease (55%). Of the patients 32 (31%) were transferred to the PC ward, among whom weakness (94%), fatigue (77%), anxiety (55%), pain (53%), and dyspnea (48%) were the most frequently noted symptoms. Of the transferred patients 5 (16%) could be discharged to home, nursing home, hospice or other. In total, 35 (34%) of all patients who were seen by palliative care specialists on ICUs in 2019 could be discharged alive. The most frequent reasons for nonadmission were lack of capacity of the PC ward (33%), dying while being on the waiting list (20%), and refusal by the patient (20%). Of the patients, 7 (26%) died within 48 h after they had been transferred to the PC ward. Performed consultation services "symptom control" (χ2 = 10.17; p < 0.05) and "counselling" (χ2 = 12.82; p < 0.001), which were requested by the intensive care physicians, showed asignificant linkage with the respective intervention performed by the palliative care team. On the other hand, no statistically significant difference was found for requested and performed "transfer" of patients from ICUs to PC ward. Comparing the transferred versus non-transferred patient population, asignificantly more frequent transfer of patients with malignant tumors (p = 0.00) was observed. The need for palliative care support in the ICUs exceeded the admission capacity of the PC ward. Future studies should further examine palliative care models in intensive care medicine.

SDPS-32 A CLINICALLY COMPATIBLE IN VITRO DRUG-SCREENING PLATFORM IDENTIFIES THERAPEUTIC VULNERABILITIES IN PRIMARY CULTURES OF BRAIN METASTASES

Abstract Approximately 20% of cancer patients (including lung, melanoma, breast, renal, and colorectal cancer patients) develop brain metastases. Current systemic therapies often show limited efficacy for brain metastasis treatment and support palliative care only. In this preclinical study, short-term cultured primary cancer cells from brain metastasis patients were molecularly characterized using next-generation sequencing and functionally evaluated using high-throughput in vitro drug screening to identify pharmacological treatment sensitivities. Next-generation sequencing identified matched genetic alterations between brain metastasis tissues and corresponding patient-derived cultured cancer cells. Mutant allele frequencies indicated that short-term cultures of cancer cells reflect the existence of distinct subpopulations of cancer cells within brain metastases. This indicates that our short-term cultured primary brain metastasis cells are suitable models for recapitulating heterogeneity in the sensitivity of tumor cells to anti-cancer drugs. Employing our in-house high-throughput in vitro drug screening platform, we screened the primary cultures from the brain metastasis patients for response to 267 anticancer compounds, and integrated the molecular and high-throughput drug screening data sets. Our preclinical study provides proof-of-concept for combining molecular profiling with in vitro drug screening for improved prediction of therapeutic vulnerabilities in brain metastasis patients. This approach could advance the use of patient-derived cancer cells in clinical practice and might eventually facilitate decision-making for personalized drug treatment.

Developing a supportive and palliative care intervention for patients with allogeneic stem cell transplantation: protocol of a multicentre mixed-methods study (allo-PaS)

IntroductionAlthough allogeneic stem cell transplantation (allo-SCT) is a curative treatment for many haematological malignancies, it is often associated with a high morbidity and mortality. Yet, little is known about the...

Palliative care needs and preferences of older adults with advanced or serious chronic illnesses and their families in rural communities of Indiana, USA.

To explore the palliative care needs and preferences of older adults with advanced or serious chronic illnesses and their families. Also, to propose strategies to promote supportive palliative care in the rural communities of Indiana, USA. We conducted qualitative interviews to gather rural caregivers' experiences of palliative care. Recruitment was done in collaboration with community partners using social media, flyers, emails, invitations, and word-of-mouth. A purposive sample of family caregivers was obtained. All the interviews were conducted online. The average interview was 30-45 minutes. Data were analyzed using a thematic analysis approach. Our findings showed 6 major themes that indicated several palliative care needs and preferences of older patients and their families in rural communities that include: (1) difficulties in pain and symptom burden; (2) perceived discrimination and lack of trust; (3) longer distances to care facilities; (4) difficult conversations; (5) caregiving burden; and (6) use of telehealth in a rural palliative care context. Rural family caregivers experience several social inequities and disparities causing a lack of access to and low utilization of palliative care. All these disparities cause several challenges for patients and their families trying to manage serious illnesses and die in place with peace and comfort. Inadequate access and lack of resources cause pain and distress for both patients and their families. Provider education and trainings, initiating early palliative care models, integrating behavioral health in palliative care, and using culturally congruent care delivery approaches in support of community partners can improve palliative care services in rural communities.

Understanding how shared decision-making approaches and patient aids influence patients with advanced cancer when deciding on palliative treatments and care: A realist review.

Patients with advanced incurable cancer face difficult decisions about palliative treatment options towards their end of life. However, they are often not provided with the appropriate information and support that is needed to make informed decisions. This review aimed to identify contexts and mechanisms associated with communication tools, patient decision-aids and shared decision-making (SDM) approaches that influence patient outcomes. We used a realist review method to search for published studies of patients (adults > 18) with advanced cancer who were expected to make a decision about palliative treatment and/or supportive care in consultationwith healthcare practitioners. We appraised and synthesised literature describing the contexts of (when and how) decision aids and SDM approaches are used, and how these contexts interact with mechanisms (resources and reasoning) which impact patient outcomes. Stakeholders including academics, palliative healthcare professionals(HCPs) and people with lived experience of supporting people with advanced incurable cancer contributed to identifying explanatory accounts. These accounts were documented, analysed and consolidated to contribute to the development of a programme theory. From the 33 included papers, we consolidated findings into 20 explanatory accounts to develop a programme theory that explains key contexts and mechanisms that influence patient and SDM. Contexts include underlying patients' and HCPs'attitudes and approaches. These need to be understood in relation to key mechanisms, including presenting information in multiple formats and providing adequate time and opportunities to prepare for and revisit decisions. Contexts influenced mechanisms which then influence the levels of patient decisional satisfaction, conflict and regret. Our programme theory highlights mechanisms that are important in supporting shared treatment decisions for advanced noncurative cancer. The findings are informative for developing and evaluating interventions to improve understanding and involvement in SDM for patients with advanced incurable cancer. We included patient and public involvement (PPI) representatives in four stakeholder meetings. PPI helped to define the scope of the review, identify their unique experiences and perspectives, synthesise their perspectives with our review findings, make decisions about which theories we included in our programme theory and develop recommendations for policy and practice and future research.

"It Becomes a Family I'm a Part of…We Get to Carry Each Other": Themes from Qualitative Interview of Patients Enrolled in an Inpatient Palliative Care Support Program for Adolescents and Young Adults.

Background: The pediatric palliative care literature provides little evidence regarding the lived experiences of adolescents and young adults (AYAs). Objectives: We sought to evaluate the aspects of a palliative care peer support program, which were most helpful to patients, and identify areas for improvement to better address their psychosocial needs. Design: This was a retrospective, cross-sectional study, which described self-reported Streetlight program evaluation using thematic analysis of interviews with AYAs. A total of 10 interviews was completed. Setting/Subjects: Thirty-three current and former Streetlight participants (13-30), enrolled in the Streetlight program for at least six months, were recruited during hospital admissions and clinic visits at UF Health Shands Hospital in the United States. Of the 33, 2 participants died before interviews could be conducted. A total of 10 interviews were conducted. Results: Thematic analysis of the 10 individuals identified 5 themes. They were (1) normalization of life in hospital, (2) mental health and instillation of hope, (3) companionship and connection, (4) diversity of volunteers, and (5) gratitude. Conclusions: Results suggest that AYAs who participated in a peer support, palliative care program benefitted from their exposure to volunteer social support. Addressing the need for continued study of this population provides opportunities to expand peer support, pediatric palliative care programs to other hospitals and care facilities.

Advancing the Role of Higher Education Institutions to Support Palliative Care Education in Primary Care and Humanitarian Settings within Low- and Middle-Income Countries: Online Workshop Report.

The need for palliative care is increasing, especially in low- and middle-income countries (LMICs). Higher education institutions (HEIs) have a role to play in developing a skilled palliative care workforce in LMICs. A workshop was held to discuss this issue, and it was attended by experts from around the world. The workshop highlighted the challenges and opportunities for palliative care education in HEIs for LMIC settings. The participants discussed the importance of a collaborative interprofessional approach and advocacy for the inclusion of palliative care into a wide range of curricula. They also expressed the hope to explore possibilities of networks to continue this discussion and incorporate the wider perspectives from primary care and humanitarian practitioners.

Recruitment lessons learned from a cross-sectional study of quality of life experienced by people receiving treatments for hepatocellular carcinoma.

e24162 Background: People with advanced-stage hepatocellular carcinoma (HCC) are living longer given improved treatment effectiveness, yet we know little of their unmet palliative and supportive care needs. Previous studies of palliative care in populations of people facing liver diseases and liver cancer have cited difficulty with recruitment. Methods: This is a cross-sectional study at a single academic medical center. Participants are recruited from a multi-specialty liver cancer practice that includes surgery, interventional radiology, and medical and radiation oncology. Treating physicians identify appropriate participants from a list of pre-screened eligible individuals generated by the study team. Once enrolled validated survey instruments are used to collect data at two time points separated by one month and a qualitative interview is conducted that focuses on the experience of living with HCC. PDSA framework was used to improve recruitment procedures to a rate of 3-4 per month. Results: During the first four months we identified 19 potential participants. Of these, ten were ineligible: four did not meet timing criteria (enrollment before treatment initiation); three lacked English proficiency; and three were identified by their physician as not appropriate for the study. Of the remaining nine potential participants, four were unable to be contacted by phone, two were uninterested (including one who specifically ended the call after hearing the term palliative care), one was lost to follow-up, and two were consented and enrolled. In response, the following modifications were made to the protocol: (1) Medical eligibility criteria were liberalized so that enrollment could occur at any time during treatment; (2) a protocol to involve trained interpreters (in-person when possible) was implemented and a study team member who can conduct qualitative interviews in Spanish was added; (3) the title of the study was changed to more accurately focus on understanding quality of life (from “Palliative Care for People Facing HCC”) to address patient and physician concern; and (4) recruitment efforts are now focused on in-person introduction of the study to develop rapport. Since implementation of these changes, enrollment doubled in just one month. Conclusions: We identified actionable protocol modifications to increase study enrollment. Liberalized inclusion criteria, language inclusivity, and careful attention to stigma around palliative care may be generalizable to similar studies about supportive care, palliative care, and hospice in the population of people facing liver cancer. Additionally, avoiding language-based exclusions for lack of resources (rather than scientific ones) increases inclusivity in research and will allow for a more meaningful and accurate description of all our participants’ needs.

Enhancing Care of Older Adults Through Standardizing Palliative Care Education.

Nursing skill in caring for persons with serious chronic illness is increasingly in demand as the proportion of older adults in the United States increases. There is robust evidence that palliative care education among health care providers influences the reduction of death anxiety and avoidance behavior, while positively impacting self-efficacy and comfort, when caring for persons with serious illness or those nearing death. The international recognition of access to palliative care as a universal human right drives the need for education to adequately prepare nurses who have not been properly prepared for this work. The development of national competencies in palliative care education for nurses is an important step in synthesizing and disseminating available evidence in support of palliative care nursing education. These recently published competencies can lead to policy innovations at local, state, and national levels. Identifying competencies that lead to more clearly defined curricula will ultimately improve standardizing education and improve nursing practice in caring for older adults with serious chronic illness and their families. [Journal of Gerontological Nursing, 49(6), 6-12.].

METASNCore: A new tool for palliative whole brain radiotherapy (WBRT) assessment in the era of targeted therapies.

e24154 Background: Palliative WBRT has been the main treatment for multiple brain metastases (BM). Recent studies report no benefit in survival or quality of life of WBRT compared to palliative supportive care in patients (pts) with poor prognosis. Several scores have been developed to support decision-making for selection of patients; despite this, the scales implemented so far do not consider the substantial impact of new developments in recent years. The purpose of this study was to develop and statistically validate a prognostic score in palliative pts with BMs who underwent WBRT. Methods: 239 pts with BM who received palliative WBRT between 2013-2022 in our center were analyzed retrospectively. Relevant clinicopathological features and their association with overall survival (OS) were measured using univariate and multivariate Cox regression models. The score was designed according to the value of the β coefficient of each variable with statistical significance (p &lt; 0.05) in the multivariate model. Extra 0.5 points were added to all variables with a statistical significance of p &lt; 0.001. Once the score was established, a comparison was performed according to Kaplan-Meier and the survival curves were analyzed with the log-rank test. Results: 149 pts (62.3%) were male and median age was 60 years. 139 (58,2%) were lung cancer (22,8% small cells), 35 (14,6%) breast cancer (53% luminal). 124 pts had ECOG 0-1 (52,1%) and 114 (47,9%) ECOG 2-3, 169 (70,7%) had extracranial disease and the most common symptom was headache (24,3%). All patients received 30Gys in 10 sessions. 37 pts (15,5%) had a specific target mutation and 15 (6,3%) received targeted therapy after WBRT. Median OS was 3,74 months (95% CI 3,28-4,20). After the multivariate analysis: ECOG, gastrointestinal (GI) or urothelial cancer, previous RT, protein C reactive (PCR), target drug treatment and chemotherapy after WBRT were shown to have independent prognostic value for the OS. Our score found 16% to 33% higher risk of the event taking place before per each point in the score. (HR (CI 95%): 1.243 (1.164 - 1.329). p &lt; 0.001) (table 1). We found that 48 pts were in group 0-4 points with mOS 6,89ms (CI 95% 3,18-10,62), 80 in group 4-7 points with mOS 4,01ms (CI 95% 3,40-4,62) and 90 pts in group &gt; 7 points with mOS 2,72ms (CI 95% 1,93-3,52). Conclusions: Some items in our cohort like ECOG, primary tumor site, PCR or post-WBRT systemic treatment (specially target treatment) are associated with OS and they could be useful in a score to select palliative pts to receive WBRT. More prospective and multicenter studies are necessary to corroborate our findings.[Table: see text]

Characteristics of untreated cancer patients admitted to an acute supportive/palliative care unit.

To assess the characteristics of patients who had never received anticancer treatments at admission of an acute supportive palliative care unit (ASPCU). From a consecutive sample of 422 advanced cancer patients, 62 patients with no previous anticancer therapy were selected and compared with a random sample of patients who had received anticancer treatments. Patients without previous anticancer therapy (14.7%) were mainly admitted to ASPCU for a low KPS and high symptom burden, often waiting for or needing a histological diagnosis to make a decision for the next therapeutic steps. This group of patients were older (P<0.0005), more frequently males (P=0.007), and had more comorbidities (P<0.0005) in comparison with treated patients. Twenty-four per cent of these patients started chemotherapy subsequently. Treatment-naive patients had a higher level of symptom burden, which was less responsive to a comprehensive palliative and more frequently died within three months in comparison with treated patients. Treatment-naive patients showed a higher level of symptom burden, which was less responsive to a comprehensive palliative treatment. In addition they more frequently died within three months in comparison with treated patients.

Optimizing palliative care and support for pets -perspectives of the pet-parent and the veterinarian.

As animals benefit from improved chronic disease care, more pet-parents and veterinarians face issues of late life and terminal care. Management of life limiting disease commonly considers the timing of euthanasia, often overlooking the role of supportive palliative care. Necessary communications between vet and pet-parents are rarely emphasized. However, as in human palliative care, the central role of good communications is critical. In particular, three communication elements are primary, namely: empathic communication and shared decision-making; managing progressive symptoms, and; advanced directives. Moreover, focusing only on euthanasia can easily discount the profound emotional legacy of bereavement. This Perspective illustrates how communications policies derived from human palliative care are exemplified in the management of a case of canine lung cancer, to the wider practice benefits of pets, pet-parents and veterinary practice staff.

Dying with behavioral and psychological symptoms of dementia in Australian nursing homes: a retrospective case-control study.

To identify predictors of mortality in people with active and challenging behavioral and psychological symptoms of dementia (BPSD). A retrospective case-control study was designed to compare those referred to Dementia Support Australia (DSA) who died in the 12 months to November 2016, with an equal number of controls who did not die. An audit tool was designed after literature review and expert opinion from the service. Odds ratio calculations and the Mann-Whitney U test were used to assess for difference. Residents of Australian residential aged care facilities with BPSD referred to the DSA service. Of 476 patients referred to DSA during the study period, 44 died. 44 controls were randomly selected from those remaining matched for age and sex. Significant differences included higher rates of benzodiazepine use, drowsiness, delirium, reduced oral intake and discussions about goals of care in those who died. Those who died were referred to the service for a shorter period and had more frequent contact between DSA and nurses at the nursing homes. Increase in opioid use and loss of skin integrity in those who died approached significance. The overall end of life course demonstrated a complex set of needs with frequent delirium, pain and frailty. Further study is required to determine the optimal care for those with BPSD at the end of their lives. This study would indicate complex end of life care needs and point to a role for palliative care support.

Palliative Care in Patients with Hematological Malignancies.

Palliative care is an attempt to improve the quality of life of patients and their relatives who have lost the chance of a cure. Interventions to improve the quality of life of patients include physical, mental, and psychosocial problems. It is known that symptoms such as pain, fatigue, loss of appetite, and feeling unwell, which often cause deterioration in quality of life, are improved with palliative care support. It is seen that palliative care support, which is mostly recommended in the end-of-life period of patients with solid tumors, is not recommended for patients with hematological malignancies. In fact, patients with hematological malignancies face physical, mental, and economic difficulties due to the intense treatment protocols required for their disease and the side effects of the treatments. Compared to patients with solid tumors, patients with hematological malignancies have a higher frequency of hospitalization and intensive care unit admission. For these reasons, our aim is to define the palliative care needs of patients with hematologic malignancies, understand the barriers to palliative care and end-of-life care, and offer solutions to improve the quality of life and care of patients with hematologic malignancies.

Palliative Care Support for Cancer Patients: Short Commentary Article

Objectives: Palliative care is the path to advance the well-being of the patients and their families facing challenges related to dangerous disease and deadly sickness through safeguard and ease of discomfort by employing advanced recognition, evaluation and therapy and other issues such as physical, psychosocial and spiritual. Materials and Methods: Descriptive design was used for this research because it focuses on the what and why the phenomenon for example, what is palliative care and why is it important. Quantifying the participants and observing them through home visits. Results: In the interview of the patients, we found responses that palliative care is quite helpful for the cancer patients to manage and minimise and ease their symptoms and assists to relieve pain and other problems, physical, psychosocial and spiritual. Conclusion: During the internship period in the Can Support organisation came across many cancer patients and some other mental problems such as dementia, the patients were included at any age. Can Support is the largest home-based palliative care in North India. This home-based palliative care helps cancer patients, especially those living below the poverty line and their families to minimise symptoms and ease their sufferings and give some instructions for their lifestyle and eating habits. They try to reduce the symptoms and give support mental, physical and psychological support to the patients and their families.

Palliative care competencies and education needs of nurses and healthcare assistants involved in the provision of supportive palliative care

Background: This paper investigates the palliative care competencies (knowledge, behaviours, attitudes) and education needs of nurses and healthcare assistants (HCAs) who provide supportive (Level 2) palliative care. Methods: A mixed-methods study using a sequential exploratory design was used, with findings integrated across sources. Qualitative focus groups were conducted in 2018 with a sample of staff (n=11, all female; nurses=4; HCAs=7) providing supportive palliative care in a single service setting. A quantitative survey, also conducted in 2018, explored the issue with a wider sample within the same setting (n=36; nurses=18; HCAs=18; female=32). Results: Qualitatively, communication was highlighted as an important domain of the competence framework, with many participants acknowledging that the ability to communicate effectively is essential. Quantitatively, participants scored in the lower range for competency variables. A significant difference was observed between HCAs and nurses on measures of knowledge (t= -2.718; df=30; p&lt;.05) and behaviour (t=-3.576; df=30; p&lt;.05), with HCAs scoring significantly higher than nurses. In relation to education, while some participants report being indecisive regarding engaging in education/training, others highlighted the benefit of education, especially its ability to impact on their practice. Conclusion: This research contributes to understanding palliative care competencies among nurses and HCAs working in palliative care, and has important implications for the education and training of nurses and HCAs working in Level 2 palliative care in Ireland.

Honoring What We Say We Do: Developing Real-World Tools for Routine Caregiver Assessment and Support in Outpatient Palliative Care (QI108)

Honoring What We Say We Do: Developing Real-World Tools for Routine Caregiver Assessment and Support in Outpatient Palliative Care (QI108)

Painting and Poetry From a Bereaved Family and the Caring Physician.

This is a case description and personal account shared by a palliative care physician whose team provided specialist palliative care support to a patient who attempted immolation. This case depicts a family at risk of complicated grief due to the violent nature of self-inflicted burns and the lingering social stigmatization of suicide. Here, we explore important psycho-emotional considerations and share our experience using art and poetry to build therapeutic connections with the grieving family.

Optimizing the structure of interdisciplinary tumor boards for effective cancer care.

Multi-professional interdisciplinary tumor boards (ITB) are essential institutions to discuss all newly diagnosed, relapsed or complex cancer patients in a team of specialists to find an optimal cancer care plan for each individual patient with regard to national and international clinical practice guidelines, patient´s preference and comorbidities. In a high-volume cancer center, entity-specific ITBs take place at least once a week discussing a large number of patients. To a high level of expertise and dedication, this also requires an enormous amount of time for physicians, cancer specialists and administrative support colleagues, especially for radiologists, pathologists, medical oncologists and radiation oncologists, who must attend all cancer-specific boards according to certification requirements. In this 15-month prospective German single-center analysis, we examined the established structures of 12 different cancer-specific ITBs at the certified Oncology Center and demonstrate tools helping to optimize processes before, during and after the boards for optimal, time-saving procedures. By changing pathways, introducing revised registration protocols and new digital supports we could show that the workload of preparation by radiologists and pathologists could be reduced significantly by 22.9% (p=<0.0001) and 52.7% (p=<0.0001), respectively. Furthermore, two questions were added to all registration forms about the patient´s need for specialized palliative care support that should lead to more awareness and early integration of specialized help. There are several ways to reduce the workload of all ITB team members while maintaining high quality recommendations and adherence to national and international guidelines.