Specialist Palliative Care Research Articles

Per-Patient Illness Trajectory Analyses.

Background: Summary statistics often hide individual patients' suffering, thereby impeding quality improvement efforts. Objectives: We aimed to show the experience of a population with health care toward the end of life while preserving the experience of the individual. Design: We developed a data display method called per-patient illness trajectory analysis. We tested it using a demonstration cohort of 192 patients with cancer referred to a regional Swedish specialized home-based palliative care practice. Chart review provided detailed information about illness trajectory events with a focus on unplanned hospitalization. Results: We created per-patient timelines spanning from cancer diagnosis until death and using a logarithmic scale: Compared with a conventional, linear timescale, this scale expands the time resolution toward the end of life. The method fosters the assessment of unmet palliative care need and care quality for individuals, small high-need groups, and populations. Conclusion: In populations of up to 200 people, per-patient illness trajectory analysis is feasible and promising. Using random sampling, it could be extended to larger populations.

Abstract 4147609: Hypoalbuminemia as predictor of poor functional status in hospitalized patients with advanced heart failure

Introduction: Timely involvement of palliative care services for patients with advanced heart failure (HF) improves symptom burden, functional status, and resource utilization. The Karnofsky Performance Scale (KPS) is an objective tool used by palliative care specialists to assess physical ability and guide palliative interventions. Patients with lower KPS have poor outcomes, however evidence linking clinical parameters such as New York Heart Association (NYHA) class, ejection fraction (EF), and albumin with KPS remains limited. Goals: To identify clinical parameters associated with poor functional status in hospitalized patients with advanced HF Methods: Individuals with acute decompensated HF admitted between 2021-2023, ineligible for advanced cardiac therapies, and referred to palliative care were included. Data collected encompassed demographic variables, clinical parameters (NYHA classification, KPS, comorbidities, EF, Brain natriuretic peptide (BNP), albumin, creatinine), and palliative care interventions (family meetings, advanced care planning discussions). Bivariate and multivariate analyses, utilizing Kruskal-Wallis and chi-square tests along with adjusted regression models, were conducted using R to compare characteristics, with a low KPS (≤40) as the primary outcome. Results: A total of 97 individuals were included, with a mean age of 68 ± 17.7 years, 32 (33.0%) were female. Hypoalbuminemia was directly associated with KPS. Patients with albumin levels ≤3 g/dL were more likely to have KPS ≤40 (OR 2.6 [CI 1.03-6.7], p=0.04). NYHA class, EF, serum creatinine, and comorbid conditions (chronic kidney disease, stroke, chronic obstructive pulmonary disease, dementia) were not significantly associated with KPS. Those with lower KPS scores had higher utilization of palliative care services for family meetings, although did not differ significantly in advanced care planning status. Conclusions: In our analysis of hospitalized patients with advanced HF, hypoalbuminemia had the highest predictive value for low functional status. Low KPS score was associated with increased utilization of palliative care services and higher rates of inpatient mortality.

Real-life effectiveness on overall survival of continued immune checkpoint inhibition following progression in advanced melanoma: estimation from the Melbase cohort.

The link between palliative care and oncology must continue to develop, taking into account advances in treatment.Immune checkpoint inhibition (ICI) for metastatic melanoma is associated with different types of response, making it difficult to assess the benefits to the patient. Some clinical trials suggest a survival advantage of ICI even in the absence of an objective radiographic response. The aim of this study is to assess the impact of continuing ICI after progression of the disease on the overall survival (OS) in a cohort of final-line metastatic melanoma patients. Clinical data from 120 patients with metastatic melanoma were collected via Melbase, a French multicentric biobank, prospectively enrolling unresectable melanoma. Two groups were defined: patients continuing final-line ICI at progression (treated) and patients stopping ICI at progression (controls). The primary end-point is the OS from progression. Propensity score weighting was used to correct for indication bias. From the 120 patients, 72 (60%) continued ICI. Median OS from progression was 4.2 months [95% confidence interval (CI) 2.6-6.27] in the treated group and median OS was 1.3 months (95% CI 0.95-1.74) in the control group (P < 0.0001). The calculated hazard ratio was 0.20 (0.13-0.33). Continued ICI was discovered to have an association with a higher rate of hospitalization at the end of life; more treatments received in the last 15 days of life and less utilization of specialist palliative care. This study discovered that patients with metastatic melanoma show a significant decrease in the instantaneous probability of mortality when they continue with finale-line ICI after progression.

EOLP-02. END-OF-LIFE CHALLENGES IN NEURO-ONCOLOGICAL PATIENT CARE: A YOUNGNOA SURVEY

Abstract BACKGROUND Malignant brain tumors inevitably relapse, almost always causing significant functional and neurological impairments. Thus, palliative care is crucial in managing individuals with malignant brain tumors. It is essential for neuro-oncologists to be well-prepared to openly communicate about and meet the palliative needs of these patients. With this survey, we sought to evaluate palliative care practices in Germany and their impact on the treatment of neuro-oncological patients. METHODS We conducted an anonymous, interdisciplinary survey targeting palliative care practices among neuro-oncologists in Germany, all members of the Neuro-oncology Working Group of the German Cancer Society. The questionnaire, designed in close coordination with board-certified palliative care specialists, was distributed to 450 physicians. It collected personal information and assessed respondents’ knowledge of and access to palliative care structures. The survey was conducted online from March 31 to April 30, 2023. RESULTS Ninety-two physicians completed the survey. Of these, 81 (88%) reported feeling comfortable with end-of-life conversations, while 11 (12%) did not. No significant differences were observed between the two subgroups regarding their level of medical education (p=0.7140), workplace (p=0.4966), sex (p=0.9999), medical specialty (p=0.5478), or region of practice (p=0.9999). However, those comfortable with end-of-life discussions had significantly more palliative care training either during specialty training (p=0.0475) or through active participation in palliative care courses (p=0.0254). Further detailed analysis is in progress. CONCLUSIONS The survey indicates that while the majority of participants are comfortable with end-of-life discussions, a clear correlation exists between their comfort level and the extent of palliative care training received. This highlights the critical need for enhanced and targeted palliative care education within neuro-oncology training programs to prepare physicians for the complex communication and care challenges in neuro-oncological palliation. Further analysis will continue to explore additional educational and systemic factors that could increase the quality of palliative care in neuro-oncology.

Use of Hospice and End-of-Life Care Quality Among Medical Centers with High Versus Lower Specialist Palliative Care Reach Among People with Heart Failure: An Observational Study.

Background: Rates of specialist palliative care (SPC) vary among Veterans Affairs Medical Centers (VAMCs) for people with advanced heart failure (aHF). We evaluated the associations between facility rates of SPC reach and the quality of end of life (EOL) care received among this population. Methods: We conducted a retrospective cohort study among 3681 people with aHF who died in 83 VAMCs from 2018 to 2020. We used multilevel logistic regression to derive SPC reach (i.e., the predicted probability or rate of SPC) for each VAMC adjusting for demographic and clinical characteristics. We examined the associations between high (top 20%) versus lower (bottom 80%) SPC reach and receipt of inpatient hospice and family-reported EOL care quality and the interactions between receiving SPC and VAMC reach on study outcomes. Results: The sample included 97.9% male, 61.6% White, and 32.2% Black adults (mean age = 72.9 ± 10.9 years). Rates of "Excellent" EOL care quality, but not inpatient hospice care, were significantly higher in VAMCs in the top 20% of reach (predicted probability: inpatient hospice = 0.56 vs. 0.51, p = 0.32; "Excellent" EOL care quality 0.69 vs. 0.60, p = 0.04). There was a significant interaction between VAMC reach, receipt of SPC, and inpatient hospice (p < 0.001) but no interaction between VAMC reach, receipt of SPC, and EOL care quality (p = 0.049). Conclusion: Families of patients with aHF who die in VAMCs with higher SPC reach report better EOL care quality regardless of whether or not they receive SPC. Research is needed to investigate factors beyond receiving SPC associated with these EOL outcomes.

Paediatric palliative care in Aotearoa New Zealand-current state and future direction.

This paper seeks to explore the current state of paediatric palliative care in Aotearoa New Zealand. The low priority afforded to paediatric palliative care for more than two decades has had a significant impact on service provision, education and research within this specialty. As a result, provision of specialist paediatric palliative care to children with serious illness and their whānau (family, including extended family) is inequitable and vastly inadequate. This paper considers the consequences of having limited access to specialist palliative care for children and whānau, and outlines what is required for both service development and current priorities for research.

Gynaecologic oncology referrals to specialist palliative care in a tertiary referral centre: population, characteristics and outcomes

BackgroundThe early integration of a specialist palliative care team is demonstrated to have numerous benefits for patients. These extend beyond end-of-life care to include reducing depressive symptoms, improving quality of...

Identifying physicians' needs in community-based palliative care consultation for cancer patients in palliative care specialist-deficient settings: a qualitative study.

Consultation with palliative care specialists can be beneficial in addressing the numerous demands of patients with cancers and their families within communities. In settings lacking palliative care specialists, establishing a new community-based palliative care consultation system necessitates gathering evidence to support its development. This study aimed to identify the specific palliative care consultation needs and the consultation methods requested by Japanese physicians in settings without palliative care specialists. A qualitative descriptive study utilizing semi-structured virtual interviews. From August 2023 to October 2023, we conducted interviews with 11 physicians providing cancer treatment in hospitals or clinics in a prefecture within the Kanto region of Japan without palliative care specialists. Participants were asked about the specific palliative care consultation needs they have and the need for consultation methods. Of the 11 physicians, nine had completed the nationwide basic primary palliative care education program. The survey revealed three themes regarding their consultation needs: 'receiving specialized insight', 'inspiring confidence', and 'improving care capacity', Two themes emerged regarding the need for consultation methods: 'enhancing care collaboration' and 'improving accessibility'. Physicians require consultation systems to empower them and enhance the community care capacity, in addition to providing specialized knowledge. These systems would include collaboration with specialists through outreach consultations, utilization of information and communications technology, and the establishment of nurse-led consultation teams to improve access to palliative care teams.

The experiences of rural generalist occupational therapists in provision of palliative care in rural, regional, and remote Australia: A phenomenological inquiry.

Access to specialist palliative care in rural and remote Australia is limited, resulting in a reliance on generalist health professionals to provide these services. Although literature exists concerning the experiences of some health professions in providing rural generalist palliative care, little is known about the experiences of occupational therapists who fill these roles. This paper aims to address this gap in knowledge by exploring the experiences of rural generalist occupational therapists in the provision of palliative care in rural, regional, and remote Australia. An interpretive phenomenological approach guided this research. Data were collected from eight rural generalist occupational therapists across Australia, using semi-structured, in-depth interviews. Data were thematically analysed to develop a nuanced understanding of lived experience in provision of palliative care. Due to the focus of this research on the practice experiences of occupational therapists, consumer and/or community involvement was not undertaken in its design or implementation. Three key themes were identified: 'community connections - a double-edged sword'; 'frustrations with structural and contextual factors limiting quality palliative care service provision'; and 'education and support as enablers of professional preparedness for palliative care service provision.' Taken collectively, these findings shed light on a variety of challenges and opportunities associated with rural generalist palliative care occupational therapy practice, as well as clues to their effective management. Knowledge of rural generalist occupational therapists' experiences can inform workforce development, promote retention of rural occupational therapists, and improve outcomes for dying persons, their families and caregivers. This study offers new insights into challenges and opportunities for rural generalist occupational therapy practice in palliative care and highlights the way in which both, new and existing support structures may be of value in promoting practice capacity and therapist wellbeing. It can be hard to get expert support for dying people in areas outside of cities in Australia. Health workers in these areas should be helped to provide good care. In this study, we spoke with some health workers in rural and remote areas who occasionally work with people who are dying. They told us that people in these areas were often helpful in supporting people who are dying because they felt close to them. But they also said that this made caring sadder for health workers because, sometimes, they were close to the people who were dying too. Having too much work, not enough experience and long distances made providing good care extra difficult. The health workers said that getting expert advice or using online teaching could help them improve their practice, but finding the time to do this is hard.

Healthcare Professionals' Perspective on Supporting Patients and Family Caregivers in End-Of-Life Care Decision-Making: A Qualitative Study in Specialist Palliative Care.

Healthcare professionals in specialist palliative care have a key role in conducting end-of-life care discussions with patients and their family caregivers. We aimed to identify key barriers and facilitators for healthcare professionals in specialist palliative care to support patients and their family caregivers in decision-making for patient end-of-life care. Twenty-two healthcare professionals from different healthcare professions were recruited from a large regional specialist palliative care service in Ireland comprising 2 hospice sites. Five focus groups were conducted with participants. Data were member checked and analyzed using thematic analysis. Open communication and trusting relationships with patients and family caregivers combined with sufficient time for early and phased exploration of the patient's preferences for end-of-life care, were key facilitators for participants. Family caregivers keeping information from the patient, family misunderstanding about who is responsible for decision-making, and a lack of involvement of other specialties in end-of-life care discussions were perceived by participants as key barriers. Although participants indicated they had sufficient expertise to support patients in end-of-life care decision-making, they felt that end-of-life care discussions were not solely the responsibility of specialist palliative care services. Open communication with patients in end-of-life care decision-making can be of central importance for healthcare professionals in specialist palliative care. Further research is needed to understand the role of healthcare professionals outside of specialist palliative care in end-of-life care discussions and decision-making.

Palliative Care for Persons with Amyotrophic Lateral Sclerosis

Palliative care in Japan is available mainly for patients with cancer, and palliative care specialists do not have sufficient experience with management of palliation in persons with amyotrophic lateral sclerosis (ALS). Treatment of ALS symptoms is an important component of palliative care, and it is important that neurologists and home care physicians familiarize themselves with palliative care for ALS in consultation with palliative care specialists. Notably, the use of opioids at the end of life differs from that of pain relief for cancer. Physicians should be mindful that opioids are not a perfect solution for palliative care of persons with ALS.

Nurse‐Led Screening‐Triggered Early Specialized Palliative Care Program for Patients With Advanced Lung Cancer: A Multicenter Randomized Controlled Trial

ABSTRACTBackgroundWe aimed to examine the effectiveness of a nurse‐led, screening‐triggered early specialized palliative care intervention program for patients with advanced lung cancer.MethodsPatients with advanced lung cancer who underwent initial chemotherapy were randomized to intervention and usual care groups between January 2017 and September 2019. The intervention comprised comprehensive needs assessments, counseling, and service coordination by advanced‐level nurses. Patients in the usual care group received the usual oncological care. The primary end point was a change in the trial outcome index (TOI) scores from baseline to 12 weeks. The secondary end‐points were TOI scores at week 20, depression, anxiety, and survival.ResultsIn total, 102 patients were assigned to each group. Compared with the usual care group, no significant improvement in TOI scores was observed at 12 weeks in the intervention group (mean group difference: 2.13; 90% confidence interval: −0.70, 4.95; p = 0.107, one‐sided), whereas significant improvement was observed at 20 weeks (3.58; 90% confidence interval: 0.15, 7.00; p = 0.043). There were no significant differences in the change from baseline depression and anxiety between the groups from baseline at week 12 and 20 weeks (depression: p = 0.60 and 0.10, anxiety: p = 0.78 and 0.067). Survival did not significantly differ between the groups (median survival time: 12.1 vs. 11.1 months; p = 0.302).ConclusionsNurse‐led, screening‐triggered, early specialized palliative care did not show significant superiority over usual care during the 12‐week study period. However, it may have yielded delayed clinical benefits, such as improved quality of life and this feasible model can be acceptable in clinical practice.Trial Registration: The University Hospital Medical Information Network Clinical Trials Registry: UMIN000025491

Early integration of palliative care in haemato-oncology: latest developments.

This review aimed to explore recent progress made in the past five years towards early access to, and integration of palliative care services within the haemato-oncology context to address the unique needs of patients with Haematological malignancies (HMs). We included 14 articles in our review. We identified three themes, namely (i) disparities in the timing of referrals remain, (ii) specialist palliative care and impact on quality of life and (iii) perceptions on early integration. Patients with HM, receive less palliative care services, regardless of their higher symptom burden compared to patients with solid tumours. Structured approaches and models of early integration have shown substantial benefits, including improved pain and symptom management, shorter hospital stays and better end of life planning. Perceptions on existing barriers include the curative treatment focus, haematologists' personal perceptions on timing of palliative care and lack of palliative care training. For early integration to happen, it is crucial to address training gaps, improve communication skills, and foster interdisciplinary collaboration. Standardised organisational pathways can facilitate early and concurrent palliative care integration. System-level flexibility and supportive policies are essential to ensure that patients with HM receive comprehensive and high-quality care.

Health care utilization at the end of life in Parkinson’s disease: a population-based register study

BackgroundKnowledge of health care utilization at the end of life in Parkinson’s disease (PD) is sparse. This study aims to investigate end of life health care utilization, characterized by emergency room (ER) visits, receipt of specialized palliative care (SPC), and acute hospital deaths in a Swedish population-based PD cohort.MethodsWe conducted a retrospective cohort study on deceased patients (≥ 18 years) with a PD diagnosis during their last year of life (n = 922), based on health care-provider data from Region Stockholm´s data warehouse, for the study period 2015–2021. Univariable and multivariable logistic regression analyses tested associations and adjusted Odds ratios (aORs) were calculated.ResultsDuring the last month of life, approx. half of the cohort had emergency room (ER) visits and risk of frailty (measured by Hospital Frailty Risk Score) significantly predicted these visits (aOR, 3.90 (2.75–5.55)). In total, 120 people (13%) received SPC during their last three months of life, which positively associated with risk for frailty, (aOR, 2.65 (1.43–4.94, p = 0.002). In total, 284 people (31%) died in acute hospital settings. Among community-dwellers, male gender and frailty were strongly associated with acute hospital deaths (aOR, 1.90 (1.15–3.13, p = 0.01) and 3.70 (1.96–6.98, p < 0.0001)).ConclusionsRates of ER visits at end of life and hospital deaths were relatively high in this population-based cohort. Considering a high disease burden, referral to SPC at end of life was relatively low. Sex-specific disparities in health care utilization are apparent. Identifying people with high risk for frailty could assist the planning of optimal end-of-life care for people with PD.

Filling the void: Expanding the role of PAs in palliative care.

Palliative care, which focuses on symptom management, quality of life, and communication, is appropriate for patients at any age and any stage in the disease process. Because of increased patient demand, the United States faces a shortage of palliative care specialists. Expansion of palliative care curriculum in physician associate/assistant (PA) programs, on-the-job training, and improvement of regulatory practice guidelines can help PAs alleviate the shortage of palliative care professionals.

The Real-World Effect of Early Screening for Palliative Care Criteria in a Medical ICU: An Instrumental Variable Analysis.

Early identification of ICU patients likely to benefit from specialist palliative care could reduce the time such patients spend in the ICU receiving care inconsistent with their goals. To evaluate the real-world effects of early screening for palliative care criteria in a medical ICU. We performed a retrospective cohort study in adults admitted to the ICU using a causal inference approach with instrumental variable analysis. The intervention consisted of screening ICU admissions for palliative care trigger conditions, and if present, offering specialist palliative care consultation which could be accepted/declined by the ICU. We evaluated specialist palliative care use in pre- and post-implementation cohorts from the year before/after screening implementation began (October 2022). In the post-implementation cohort, we compared use of specialist palliative care in those who received early screening versus not. We then estimated the effect of early screening on the primary outcome of days to do-not-resuscitate (DNR) code status or ICU discharge, with death without a DNR order placed at the 99th percentile of the days to DNR or ICU discharge distribution. Secondary outcomes included: DNR order, ICU/hospital lengths of stay, hospice discharge, and mortality metrics. To address unmeasured confounding, we used two-stage least-squares instrumental variables analysis. The instrument, which predicts early screening, comprised weekend vs. weekday admission and number of patients meeting palliative care criteria on a patient's ICU days 1 and 2. Amongst 1282 post-implementation admissions, 626 (45%) received early screening, and 398 (28%) received specialty palliative consultation. Early receipt of specialist palliative care was higher in patients who received early screening vs. not (17% vs 1% , p<0.001), and overall use of specialty palliative care was higher post- vs. pre-screening implementation (28 vs. 15%, p<0.001). In the post-implementation cohort, there were no statistically significant effects of early screening on the primary outcome of days to DNR or ICU discharge (15% relative increase, 95% CI [-11% to +48%]) or other secondary outcomes. Despite significantly increased specialty palliative care consultation there was no evidence that early screening for palliative care criteria affected time to DNR/ICU discharge or other secondary outcomes.

Role of children's hospices in caring for children, young people and families.

Children's hospices are central to specialist palliative care provision for the increasing number of children and young people with life-limiting conditions and their families. These hospices provide holistic care through a range of services, including ongoing care from the point of diagnosis, at the end of life and into bereavement. This article outlines the services provided by children's hospices, while dispelling misconceptions that they exclusively provide care at the end of life. It also explains how these services have developed and evolved as a result of technological advances. It is useful for nurses to be aware of the role of children's hospices, so that they can support the effective care of children and young people with life-limiting conditions and their families.

Efficacy of spiritual interventions in palliative care: An umbrella review of systematic reviews.

Spiritual care is increasingly recognised as an essential component of care in palliative settings. Given this growing body of literature on spiritual interventions, there is a need to systematically evaluate and synthesis findings from previous systematic reviews. To systematically synthesise the available evidence from systematic reviews concerning (a) the efficacy of spiritual care interventions and (b) the extent and nature of spiritual care interventions used in specialist palliative care settings. An umbrella review of systematic reviews was conducted in accordance with PROSPERO (CRD42024455147) and followed the Joanna Briggs Institute methodology for umbrella reviews. Electronic databases (Ovid Medline, Embase, APA PsycINFO, Cochrane Database of Systematic Reviews, CINAHL and Web of Science) and references of accepted systematic reviews were searched for systematic reviews from inception to 2024. The AMSTAR-2 criteria was used to assess risk of bias within systematic reviews. A toal of 27 reviews met the eligibility criteria and reported the effects of 14 different spiritual care interventions across 431 studies including 55,759 participants. Findings show that spiritual care interventions especially dignity therapy and life-review may be effective for improving outcomes including spiritual wellbeing, emotional symptoms, quality-of-life and physical symptoms in people receiving specialist palliative care. Under half of included reviews report follow-up data where only emotional symptoms and quality-of-life are reported in more than one review. Overall, spiritual care interventions have positive effects on spiritual wellbeing, quality of life and mood, compared to control conditions. Increased methodological rigour is needed to capture effect and duration of effect with spiritual care interventions at different phases of palliative care.

Symptom management for people with advanced dementia who are receiving end of life care.

This review aims to synthesise contemporary research on symptom management for people with advanced dementia who are thought to be in the final year of life. It highlights the unique challenges faced by palliative care and dementia care specialists, offering insights into the clinical decision-making required to support those with advanced dementia in various care settings. Recent studies indicate that people with advanced dementia often experience significant unmet palliative care needs, particularly regarding symptom management. Pain, breathlessness, and psychological distress are frequently mismanaged, which contributes to suboptimal care. Moreover, the unpredictable trajectory of dementia complicates the identification of end-of-life needs, which can result in fragmented care. Caregivers, both professional and family, struggle with managing complex symptoms, while family caregivers in home settings face added burdens in providing care without sufficient support. Palliative care for people with advanced dementia is currently inadequate due to a lack of tailored interventions, poor symptom management, and disjointed care systems. Enhancing training for caregivers, fostering interdisciplinary collaboration, and focusing on integrated care approaches across home and institutional settings are crucial to improving quality of life and symptom control for people with advanced dementia.

Utilizing intricate care networks: An ethnography of patients and families navigating palliative care in a resource-limited setting.

The increase in non-communicable disease burdens and aging populations has led to a rise in the need for palliative care across settings. In resource-limited settings such as Indonesia, however, notably in rural areas, there is a lack of professional palliative care. Little is known about specific palliative care navigation, as previous studies have mostly focused on cancer care navigation. A locally tailored approach is crucial. To explore how patients and families navigate palliative care and the problems they experience. An ethnographic study using in-depth interviews and observations, analyzed using reflexive thematic analysis. Interviews with 49 participants (patients, family caregivers, and health professionals) and 12 patient-family unit observations in Banyumas, Indonesia. Patients and families navigated palliative care through different strategies: (1) helping themselves, (2) utilizing complementary and alternative medicine, (3) avoiding discussing psychological issues, (4) mobilizing a compassionate and advocating community, and (5) seeking spiritual care through religious practices. Our participants used intricate care networks despite limited resources in navigating palliative care. Several problems were rooted in barriers in the healthcare system and a lack of palliative care awareness among the general public. Local primary health centers could be potential palliative care leaders by building upon pre-existing programs and involving community health volunteers. Cultivating a shared philosophy within the community could strengthen care collaboration and support.