Palliative Care Physicians Research Articles

Towards a Clinically Relevant Appreciation of the Cost of Caring: A Study of Palliative Care Physicians in Malaysia.

Background: The cost of caring for patients and their families in the midst of interconnected resource, ethical, moral, legal and practical considerations compromises a physician's emotional and physical well-being and therefore patient care. Whilst the cost of caring is historically best associated with compassion fatigue, data has suggested that this may extend to other related concepts, such as vicarious trauma, secondary traumatic stress and burnout. In particular, palliative care physicians are especially vulnerable as they witness and encounter more cases of death and dying. Methods: This study aims to provide a more clinically relevant notion of the cost of caring amongst palliative care physicians in Malaysia. 11 physicians underwent semi-structured interviews as part of the Systematic Evidence-Based Approach (SEBA) for prospective studies. Results: Analysis of the interview transcripts revealed the following domains: (1) conceiving the costs of caring; (2) risk factors; and (3) support mechanisms. Conclusion: This SEBA-guided study into the cost of caring amongst Malaysian palliative care physicians suggests that the costs of caring extend beyond encapsulating moral distress, compassion fatigue, vicarious trauma, secondary traumatic stress and burnout. Rather, the data suggests a personalized notion that varies with individual and contextual factors which are in flux and change over time. A longitudinal, personalized and holistic mentoring program is therefore proposed to counter this cost.

Implementing palliative care in hepatocellular carcinoma ambulatory clinics-study protocol for Accelerated translational research in PRImary liver CAncer (APRICA) randomised controlled palliative care trial.

Integration of symptom and palliative care for people with advanced cancer is established in many tumour types, but its role in people with hepatocellular carcinoma (HCC) has not been clearly defined. This study aims to evaluate the clinical and cost effectiveness of an intervention involving a suite of strategies designed to assess and treat palliative care symptoms and needs in adult outpatients with HCC attending four New South Wales (NSW) metropolitan tertiary hospitals. This trial will use a pragmatic cluster-based randomised-controlled design, with ambulatory HCC services as the clusters. HCC patients will be recruited if they have Barcelona Clinical Liver Cancer (BCLC) stage A disease with active tumour or a current or prior diagnosis of BCLC stage B or C disease regardless of tumour activity. Patients with BCLC stage D disease will be excluded as palliative care is the standard of care (SOC) in this group. Cluster sites will be randomised to the study intervention or control where patients are managed according to SOC. All participants will complete the liver-specific Edmonton Symptom Assessment Scale (ESAS) and European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire at regular ambulatory clinic appointments. At intervention sites, patients scoring ≥ 5 on any liver-specific ESAS symptom will be referred to palliative care physicians for consultation. The primary clinical outcome will be improvement in all symptoms scored ≥ 5 on the liver-specific ESAS by 50% within 3months and the primary implementation outcome will recording the liver-specific ESAS in ≥ 80% of all participants attending clinic appointments. Caregivers of patients enrolled in the trial will be invited to perform Carer Support Needs Assessment Tool at each appointment. This trial will inform if earlier palliative care involvement significantly reduces the symptom burden associated with HCC. If found to be effective, earlier implementation of palliative care consultation should be included in HCC treatment guidelines. ACTRN12623000010695. Registered on September 1, 2023.

Feasibility of prospective error reporting in home palliative care: A mixed methods study.

Prospectively tracking errors can improve patient safety but little is known about how to successfully implement error reporting in a home-based palliative care context. Explore the feasibility of implementing an error reporting system in a home-based palliative care program in Toronto, Canada, and describe the possible factors that may influence uptake. A convergent mixed-methods approach was used. Participants prospectively documented errors using a novel reporting tool and completed monthly surveys. Following the reporting period, we conducted a semi-structured interview exploring participants' experiences and perceived factors influencing reporting behaviors. Error, survey, and interview data were analyzed separately, then integrated for comparison. Thirteen palliative care physicians from a single home-based palliative care organization in Toronto, Canada anonymously reported errors between October 2021 and September 2022. Of these, six participated in the exit interview. Participants reported 195 errors; one-third (n = 65) involved internal staff or systems. Three themes describe the factors impacting the likelihood of reporting errors: (1) High levels of cognitive burden decreases the likelihood of error reporting; (2) Framing errors as opportunities to learn rather than reason for punishment improves likelihood of error reporting; (3) Knowing that error data will improve patient safety motivates individuals to report errors. Physicians are amenable to error reporting activities so long as data is used to improve patient safety. The collaborative nature of care in a home-based palliative care context may present unique challenges to translating error reporting to improved patient safety.

A Palliative Care Physician's Dream Journal.

A Palliative Care Physician's Dream Journal.

The impact of a web-based prognostic calculator on prognostic confidence in outpatient palliative care.

Clinicians are often uncertain about their prognostic estimates, which may impede prognostic communication and clinical decision-making. We assessed the impact of a web-based prognostic calculator on physicians' prognostic confidence. In this prospective study, palliative care physicians estimated the prognosis of patients with advanced cancer in an outpatient clinic using the temporal, surprise, and probabilistic approaches for 6m, 3m, 2m, 1m, 2 w, 1 w, and 3 d. They then reviewed information from www.predictsurvival.com , which calculated survival estimates from seven validated prognostic scores,including the Palliative Prognostic Score, Palliative Prognostic Index, and Palliative Performance Status, and again provided their prognostic estimates after calculator use. The primary outcome was prognostic confidence in temporal CPS (0-10 numeric rating scale, 0 = not confident, 10 = most confident). Twenty palliative care physicians estimated prognoses for 217 patients. The mean (standard deviation) prognostic confidence significantly increased from 5.59 (1.68) before to 6.94 (1.39) after calculator use (p < 0.001). A significantly greater proportion of physicians reported feeling confident enough in their prognosis to share it with patients (44% vs. 74%, p < 0.001) and formulate care recommendations (80% vs. 94%, p < 0.001) after calculator use. Prognostic accuracy did not differ significantly before or after calculator use, ranging from 55-100%, 29-98%, and 48-100% for the temporal, surprise, and probabilistic approaches, respectively. This web-based prognostic calculator was associated with increased prognostic confidence and willingness to discuss prognosis. Further research is needed to examine how prognostic tools may augment prognostic discussions and clinical decision-making.

Palliative care in patients with hepatocellular carcinoma: Results from a survey among hepatologists and palliative care physicians

Background: Delays and limitations of palliative care in patients with liver transplantation-ineligible end-stage hepatocellular carcinoma according to Barcelona Clinic Liver Cancer staging system may be explained by different perceptions between hepatologists and palliative care physicians in the absence of shared guidelines. Aim: To assess physicians’ attitudes toward palliative care in end-stage hepatocellular carcinoma and to understand what the obstacles are to more effective management and co-shared between palliative care physicians and hepatologists. Design: Members of the Italian Association for the Study of Liver Disease and the Italian Society of Palliative Care were invited to a web-based survey to investigate practical management attitude for patients with liver transplant-ineligible end-stage hepatocellular carcinoma. Participants: Physician members of the of the two associations, representing several hospitals and services in the country. Results: Ninety-seven hepatologists and 70 palliative care physicians completed the survey: >80% regularly follow 1–19 patients; 58% of hepatologists collaborate with palliative care physicians in the management of patients, 55% of palliative care physicians take care of patients without the aid of hepatologists. Management of cirrhosis differed significantly between the two groups in terms of prescription of albumin, esophagogastroduodenoscopy, anti-viral treatment, anticoagulation, indication to paracentesis and management of encephalopathy. Full-dose acetaminophen is widely used among hepatologists, while opioids are commonly used by both categories, at full dosage, regardless of liver function. Conclusions: This survey highlights significant differences in the approach to patients with liver transplantation-ineligible end-stage hepatocellular carcinoma, reinforcing the need for shared guidelines and further studies on palliative care in the setting.

Improving the detection and documentation of patients’ symptoms in an integrated gastrointestinal oncology and palliative care clinic.

336 Background: Patients with gastrointestinal (GI) malignancies experience a high burden of disease-related symptoms and treatment side effects. We established an integrated GI oncology and palliative care (PC) clinic in which a PC physician is co-located with the oncology team and can provide timely response to patient distress and facilitate communication with the interdisciplinary palliative care team. Yet, even in the integrated clinic, patient symptoms were unreliably assessed, leading to missed opportunities to address patient suffering. Between October 2023 and January 2024 for patients seen in-person in the integrated clinic for oncology or PC visits, the median rate of symptom documentation was 45%. Emotional, financial, and spiritual distress documentation rates were lowest. We hypothesized that by implementing a systematic, comprehensive patient-reported symptom assessment tool, we could increase the detection and documentation of symptoms, and in turn, improve communication around patient distress and timely response to symptoms. Methods: We measured the rate of symptom documentation (primary outcome) and the use of a patient-reported symptom assessment tool for adults with GI cancers seen in-person in the integrated clinic in Spring 2024. Based on the Edmonton Symptom Assessment Scale (ESAS) and expert consensus, we determined which symptoms were most important to identify. Documentation rates were assessed via manual chart review of visit notes and flowsheet data. Prospective post-intervention data (March to May 2024) were compared to retrospective pre-intervention baseline data (October 2023 to January 2024). Interventions included modification of the ESAS to include GI oncology-specific symptoms, implementation of the tool in paper format to encourage patient-clinician communication, frequent staff education and feedback sessions, creation and dissemination of a resource guide for clinicians to respond to identified distress, and patient satisfaction surveys. Results: 126 patients were included in the study (31 pre-intervention and 95 post-intervention). During the post-intervention period, the median rate of symptom documentation increased from 45% to 83% and the median rate of ESAS survey completion increased from 9% to 68%. Documentation of financial and spiritual distress increased from 13% to 71%, for both, and documentation of emotional distress increased from 35% to 72%. On satisfaction surveys (N=20), most patients reported the tool was helpful in sharing their symptoms (70%), was easy to read and understand (100%), and that their clinician was engaged in addressing their symptoms (67%). Conclusions: The implementation of a patient-reported symptom assessment tool in an integrated GI oncology/PC clinic increased documentation of important symptoms, potentially increasing clinician awareness of patient distress.

Simultaneous Care provision to patients with Small Cell Lung Cancer in Lazio region: practical recommendations of a multidisciplinary group

Small-Cell Lung Cancer (SCLC) accounts for 15% of all lung cancer cases. Due to comorbidities and its aggressive behaviour, patients are highly symptomatic even at a non-metastatic stage. Standardizing the care pathway and introducing a simultaneous care approach could address the unmet needs of this disease. However, there is no uniformity in the involvement of palliative care physicians and in the simultaneous use of palliative care and cancer therapies. In this context, 13 experts from Lazio region undertook a process to deepen their understanding of the regional provision of simultaneous care to patients with SCLC by structuring and carrying out a survey. The survey covered 35-52% of SCLC cases in the region, confirming heterogeneous results in both management and therapeutic approach, particularly in the area of simultaneous care. The working group met to define practical recommendations with the aim of standardizing the management of this disease.

Impact and cost-effectiveness of synergy between embedded palliative care and quality improvement teams on EOL quality metrics and resources utilization in a community-based oncology practice.

32 Background: There is evidence that Palliative Care (PC) brings value to health care organizations by positively affecting outcomes and quality-of-care metrics, however hiring a full PC team may be challenging for community practices. This report describes the impact on end-of-life (EOL) quality metrics of a close collaboration between an embedded PC provider and the Quality Programs and Process Improvement (QPPI) team in a community-based oncology practice. Methods: Blue Ridge Cancer Care (BRCC) hired a PC physician in October of 2021 and in the following months created a QPPI team composed of a Senior Director, Nurse Navigators, Social Worker, and Health Equity Administrator. The PC provider and QPPI team established a close collaboration to optimize support and referrals to PC for patients with advanced cancer. This retrospective cohort review compared patients who received PC with those who did not. Metrics reviewed where hospice admissions and hospice length of stay (LOS) categorized in average LOS, &gt;3 days and &gt;30 days. Results: BRCC serves about 15,000 active patients a year, with more than 6,000 new consults, and a total of more than 60,000 visits. This analysis reviewed a total of 3,352 decedents from October 2021 through April 2024. Cumulative data are shown (Table). Conclusions: Our experience suggests that PC embedded in an Oncology practice can collaborate with the existing QPPI team to improve EOL quality metrics and save resources. Patients with PC Patients without PC Admitted to hospice 61% (n=166) 30% (n=962) Hospice &gt; 3 days 84% (n=140) 52% (n=477) Hospice LOS &gt;30 days 43% (n=71) 22% (n=202)

Palliative care case management in a surgical department for patients with gastrointestinal cancer—a register-based cohort study

BackgroundThe effectiveness of generalist palliative care interventions in hospitals is unknown.AimThis study aimed to explore the impact of a palliative care case management intervention for patients with gastrointestinal cancer (PalMaGiC) on hospital admissions, healthcare use, and place of death.DesignThis was a register-based cohort study analyzing data from the Danish Register on Causes of Death, the Danish National Patient Register, and the Danish Palliative Database.Setting/participantsDeceased patients with gastrointestinal cancer from 2010 to 2020 exposed to PalMaGiC were compared over three periods of time to patients receiving standard care.ResultsA total of 43,969 patients with gastrointestinal cancers were included in the study, of whom 1518 were exposed to PalMaGiC. In the last 30 days of life, exposed patients were significantly more likely to be hospitalized (OR of 1.62 (95% CI 1.26–2.01)), spend more days at the hospital, estimate of 1.21 (95% CI 1.02–1.44), and have a higher number of hospital admissions (RR of 1.13 (95% CI 1.01–1.27)), and were more likely to die at the hospital (OR of 1.94 (95% CI 1.55–2.44)) with an increasing trend over time. No differences were found for hospital healthcare use.ConclusionPatients exposed to the PalMaGiC intervention had a greater likelihood of hospitalizations and death at the hospital compared to unexposed patients, despite the opposite intention. Sensitivity analyses show that regional differences may hold some of the explanation for this. Future development of generalist palliative care in hospitals should focus on integrating a home-based approach, community care, and PC physician involvement.

Exploring the Challenges in Palliative Care As Perceived by the Saudi Physicians: A Cross-Sectional Study.

Palliative care is essential for managing patients with life-limiting illnesses. In Saudi Arabia, providing effective palliative care is uniquely challenging due to cultural, religious, and social factors. Despite healthcare advancements, there is a gap in understanding the challenges faced by physicians in palliative care within this context. This study aimed to explore the challenges encountered in palliative care as perceived by physicians in Riyadh, Saudi Arabia. A cross-sectional survey was conducted using an electronic questionnaire distributed among physicians involved in palliative care at the specified healthcare institutions. The questionnaire assessed their perceptions of the challenges in palliative care and the influence of their socio-demographic backgrounds on these perceptions. Data were analyzed using the Statistical Package for the Social Sciences (SPSS). The age distribution of the enrolled physicians showed that a majority were between 20-40 years old (48.48%, n = 96). Male physicians accounted for 64.65% (n = 128), and females for 35.35% (n = 70). Various specialties were represented, with critical care (15.66%, n = 31) and radiation oncology (16.67%, n = 33) being the most common. Major challenges identified included limited outpatient and inpatient services (54.55%, n = 108), restricted access to allied healthcare professionals (60.61%, n = 120), ethical dilemmas due to triaging (63.13%, n = 125), lack of telemedicine facilities (57.07%, n = 113), and the impact of the COVID-19 pandemic on pain and palliative care research (60.1%, n = 119). Strategies adopted to mitigate these challenges included creating triage systems (54.55%, n = 108), using telemedicine (60.61%, n = 120), advanced care planning (63.13%, n = 125), and providing necessary personal protective equipment (PPE) (60.1%, n = 119). This study highlights significant barriers in palliative care, such as limited services, ethical dilemmas, and lack of telemedicine facilities. Addressing these challenges requires ethical support for healthcare providers, integration of telemedicine, continuous education, and improved access to multidisciplinary care teams, which are crucial for enhancing palliative care quality and ensuring comprehensive patient support.

Midazolam Indications and Dosing in Palliative Medicine: Results from a Multinational Survey.

Despite sparse evidence and limited guidance on indications, use, and dosing, midazolam is widely used in palliative care. We aimed to describe and compare the use of midazolam in three different countries to improve clinical practice in palliative care. We performed an online survey among palliative care physicians in Norway, Denmark, and the United Kingdom (UK). The focus was indications, dosing, administration, and concomitant drugs. A web-based questionnaire was distributed to members of the respective national palliative medicine associations. The total response rate was 9.4%. Practices in the UK, Norway, and Denmark were overall similar regarding the indications of midazolam for anxiety, dyspnoea, and pain treatment in combination with opioids. However, physicians in the UK used a higher starting dose for anxiety, dyspnoea, and pain treatment compared to Norway and Denmark, as well as a higher maximum dose. Danish physicians preferred, to a higher degree, on-demand midazolam administration. Despite practice similarities in the UK, Norway, and Denmark, differences exist for midazolam dosing and administration in palliative medicine. We demonstrated a lack of consensus on how midazolam should be used in palliative care, setting the stage for future studies on the topic.

Trauma patients with metastatic cancer undergoing emergent surgery: A matched cohort analysis

BackgroundThere is a paucity of literature guiding trauma surgeons in the care of patients with active metastatic cancer (MC). Even less is known regarding outcomes for MC patients requiring emergent surgery after trauma. We hypothesized that trauma patients with active Metastatic Cancer (MC) have an increased mortality rate and undergo increased rates of withdrawal of care (WoC) within 72-hours following emergent operations, compared to similarly matched patients without MC. MethodsPatients with active MC at the time of traumatic injury were matched 1:2 against patients without active MC based on demographics, comorbidities, vital signs on admission, and injury profile. ResultsFrom 43,826 patients, 0.2 % had MC. After matching 39 MC patients to 78 without MC, there was no difference in demographics, comorbidities, injury severity score, mechanism of injury, vitals on admission (blood pressure, heart rate, respiration rate) and need for blood transfusion (all p > 0.05). Compared to patients without MC, patients with MC had higher rates and associated risk of death during index hospitalization (38.5 % vs. 15.2 %, p = 0.005; OR 3.49, CI 1.43–8.51, p = 0.006), as well as a higher rate and associated risk of WoC within 72-hours (12.8 % vs. 1.3 %, p = 0.007; OR 11.47, CI 1.29–101.93, p = 0.029). ConclusionTrauma patients with MC requiring emergent thoracic or abdominal surgery have a high risk of death and an over ten-fold higher associated risk for WoC within the first three days. In some cases, palliative care consultation should be considered, and counseling should be offered to this high-risk trauma population to enable individualized and patient-centric decisions. Key messageThis research highlights the importance of a multidisciplinary team consisting of trauma surgeons, oncologist, and palliative care physicians in caring for the high-risk trauma patients with disseminated cancer requiring urgent surgery.

Palliative care and end stage liver disease: A survey study comparing perspectives of hepatology and palliative care physicians and clinical scenarios that could require palliative care intervention

Background and aimsThe prevalence and mortality of chronic liver disease has risen significantly. In end stage liver disease (ESLD) the survival of patients is approximately 2 years. Despite the poor prognosis and high symptom burden of these patients, integration of palliative care is reduced. We aim to analyze the agreement between palliative care and hepatology physicians of clinical scenarios that could require palliative care intervention. MethodsA cross-sectional study was conducted. Palliative care and hepatology physicians were surveyed. Using a five-point Likert scale, their perceptions of palliative care in ESLD were rated. Their agreement in clinical scenarios that could require palliative care intervention were evaluated. Analyses were conducted to assess any differences by primary role (hepatology vs. palliative care) and length of practice (<10 years vs. 10 years). ResultsA total of 123 responses were obtained: 52% from palliative care and 48% from hepatology. The majority (66.7%) work in the field for up to ten years. There was a great consensus in 4 of the 8 clinical scenarios. In scenarios with less consensus, the area of activity and length of practice influence the reliance of physicians on palliative care. Involvement of palliative care in ESLD was considered “rare” by 30% and 61% consider difficult to predict the prognosis. More than 90% support medical training in both areas of activity. ConclusionThe current involvement of palliative care is considered low, but there are clinical conditions that reveal a clear consensus and there's a unanimous view of the relevance of training.

Care Coordination Between Family Physicians and Palliative Care Physicians for Patients With Cancer: Results of a Quality Improvement Initiative.

At our institution's cancer palliative care (PC) clinic, new referrals from oncologists were scheduled for consultation and ongoing follow-up by PC physicians without input from the patients' family physicians (FPs). FPs reported that they felt out of the loop. We implemented a quality improvement (QI) initiative aimed at systematically facilitating care coordination between FPs and PC physicians. A coordination toolkit was sent from the PC physician to the FP whenever the PC physician received a consultation request from an oncologist. The toolkit included an introduction to the PC physician team; an opportunity for the FP to choose how best to collaborate with PC physicians to meet the patient's PC needs; and contact information for access to 24/7 PC physician support. Responses from FPs regarding their preferred level of engagement with PC determined further care planning in the clinic. We measured feasibility, response rate, and qualitative surveys of FPs about the usefulness of the intervention. Two hundred fourteen new consultations were eligible for a standardized letter over the 6-month implementation period. Feasibility for sending the toolkit was 90.0% and response rate for collaborative care preference from FPs was 86.0%, with median response time of 3-4 days. 78.9% of FPs indicated they would prefer ongoing consultative care by the PC physician, while 18.6% indicated that PC physician consultation was not needed, or that the FP would provide primary PC after a one-time PC physician consultation. We successfully implemented a QI initiative to improve care coordination between FPs and PC physicians for patients with cancer. The coordination toolkit can protect the patient-FP primary PC relationship and optimize specialist PC resource utilization for complex patients.

A Comparison of Palliative Care Delivery between Ethnically Chinese and Non-Chinese Canadians in the Last Year of Life.

Ethnically Chinese adults in Canada and the United States face multiple barriers in accessing equitable, culturally respectful care at the end-of-life. Palliative care (PC) is committed to supporting patients and families in achieving goal-concordant, high-quality serious illness care. Yet, current PC delivery may be culturally misaligned. Therefore, understanding ethnically Chinese patients' use of palliative care may uncover modifiable factors to sustained inequities at the end-of-life. To compare the use and delivery of PC in the last year of life between ethnically Chinese and non-Chinese adults. Population-based cohort study. All Ontario adults who died between January 1st, 2012, and October 31st, 2022, in Ontario, Canada. Chinese ethnicity. Elements of physician-delivered PC, including model of care (generalist; specialist; mixed), timing and location of initiation, and type of palliative care physician at initial consultation. The final study cohort included 527,700 non-Chinese (50.8% female, 77.9 ± 13.0 mean age, 13.0% rural residence) and 13,587 ethnically Chinese (50.8% female, 79.2 ± 13.6 mean age, 0.6% rural residence) adults. Chinese ethnicity was associated with higher likelihoods of using specialist (adjusted odds ratio [aOR] 1.53, 95%CI 1.46-1.60) and mixed (aOR 1.32, 95%CI 1.26-1.38) over generalist models of PC, compared to non-Chinese patients. Chinese ethnicity was also associated with a higher likelihood of PC initiation in the last 30days of life (aOR 1.07, 95%CI 1.03-1.11), in the hospital setting (aOR 1.24, 95%CI 1.18-1.30), and by specialist PC physicians (aOR 1.33, 95%CI 1.28-1.38). Chinese ethnicity was associated with a higher likelihood of mixed and specialist models of PC delivery in the last year of life compared to adults who were non-Chinese. These observed differences may be due to later initiation of PC in hospital settings, and potential differences in unmeasured needs that suggest opportunities to initiate early, community-based PC to support ethnically Chinese patients with serious illness.

Healthcare professionals’ experiences of video consultations in palliative care in rural areas: an intervention study in community care

BackgroundThe population is aging, leading to an increased need for palliative care and end-of-life care. There is a lack of research on the use of video consultations for knowledge transfer between specialist and general palliative care. The aim of this study was to describe healthcare professionals’ experiences of video consultations in palliative care in community homecare and nursing homes in rural areas.MethodsIndividual interviews (n = 11) were conducted with five community nurses, one occupational therapist, two specialist palliative nurses, and three specialist palliative care physicians. The data were analysed using reflexive thematic analysis.ResultsThe analysis identified three themes: feeling comfortable with increased availability of specialist expertise; seeing each other facilitates communication; and being supported by physically present care professionals is essential.ConclusionHCPs suggest that video consultations are an effective way to increase access to specialist palliative care and provide more equal care to patients with palliative care needs in rural community care.

Pediatric Palliative Care of a Transgender Adolescent.

A 15-year-old patient with metastatic synovial sarcoma conveyed to his palliative care physician that his dying wish was to start gender-affirming hormone therapy. His medical team was able to identify resources to support both him and his family as they navigated the immense difficulty of a cancer diagnosis and began to understand their child's gender identity. Literature on the care of gender diverse pediatric patients with terminal illness is minimal, but applications from adult literature, and research on supporting gender diverse adolescents more broadly, provided guidance for palliative care, oncology, and gender-affirming care teams. We believe that honoring and supporting the gender identity of adolescents with terminal illness is an essential aspect of end-of-life care. This case report outlines challenges faced by multidisciplinary pediatric team members who provided gender-affirming care for a minor under hospice care and amplifies the need for future research and guidelines pertinent to this patient population.

Rural palliative care in cancer: Using telemedicine to bridge the gap.

e13807 Background: Despite the rapid growth in palliative care (PC) services, many rural regions remain without access to specialty palliative care. Community-based telemedicine may offer solutions to underserved populations from rural areas within the United States. Methods: This is a retrospective review of the creation of 2 separate rural clinics attached to the VCU Massey Comprehensive Cancer Center at CMH in South Hill, VA in 2018 (with interruption related to the Covid-19 pandemic) and in Tappahannock, VA in 2021. In addition to operational descriptions a chart review was conducted of all encounters for these clinics. Care provided was coordinated by the University PC service and the oncology clinics, including nurses and oncologists. Regulatory, legal, Information Technology (IT), and systems logistics were developed in partnership for 6-9 months prior to each pilot. There were over 100 encounters from the two periods of care for CMH (2018 until paused for pandemic towards the end of 2020; and March of 2021 to current) and greater than 50 at Tappahannock. All visits were conducted in the rural oncology clinics with assistance of oncology nursing during the encounter. Results: The average patient age was 57, and over 90% had solid tumors. On average, patients had 1-2 telemedicine visits. The most common reason for referral was symptom management, predominantly pain. Edmonton Symptom Assessment scales were collected at all visits by oncology nursing. Physical exams were completed with electronic stethoscopes and supported by oncology nursing. Medications were prescribed to rural pharmacies electronically directly by the PC physician; for the periods of clinic over the course of the Covid-19 public health emergency this included prescriptions for controlled substances (almost exclusively long and short acting opioids). For patients requiring advance care planning documents were completed electronically or by trained interdisciplinary team members in clinic in partnership with the PC physician. Technological issues occurred rarely (less than 1% of visits) and resolved without IT involvement. Conclusions: Our pilot program integrated specialist palliative care into two rural oncology clinics providing supportive care, including symptom management and goals of care discussions. Further research should define optimal integration of PC telemedicine into rural oncology.

Technology-enhanced palliative care for patients with advanced cancer undergoing phase I therapies: A pilot randomized clinical trial (RCT).

12017 Background: Outpatient palliative care (PC) has been found to improve quality of life (QOL). It is not known if more frequent symptom monitoring and PC nursing contacts between clinic visits would offer additional benefits. We conducted a pilot RCT to examine the effect of a specialist PC referral with and without technology-enhancement (TEC) on symptoms in patients undergoing Phase I cancer therapies. Methods: This single-center parallel group RCT enrolled adult patients with advanced solid tumors prior to starting Phase I therapies and at least 1 Edmonton Symptom Assessment Scale (ESAS) symptom ≥4/10 and ESAS Global Distress Score (GDS) ≥20/90. Patients were randomized to PC alone or PC + TEC in a 1:1 ratio. Over the 12 w period, the PC group had in person or virtual outpatient visits with a PC physician, nurse, and as needed psychotherapist every 4 weeks; the PC + TEC group also received weekly symptom monitoring with ESAS electronically and weekly nursing phone call. The primary outcome was within-group change of GDS from baseline to 2 w; secondary outcomes included change in GDS over 4, 8, and 12 w, and change in QOL (FACIT-Sp) over 2, 4, 8 and 12 w. We estimated that a sample size of 50 patients per group would provide 90% power to detect a within-group GDS difference of 6 units with a 2-sided α of 2.5% and 20% attrition. Results: Between 12/15/2020 and 12/21/2022, 115 patients were enrolled and 101 were randomized (PC + TEC n = 57, PC n = 44). By 2 w, PC + TEC showed a significant within-group improvement in GDS (mean change -5 [95% CI -8.9, -1.2]; P= 0.01) but not PC alone (Table). PC+TEC group also had a significant improvement in GDS at 8 w and 12 w and in FACIT-SP at 2 w, 8 w and 12 w. PC alone group had a significant within-group improvement in GDS at 4 w and 12 w but no significant differences in QOL were detected. This study was not powered for between group comparison; however, FACIT-SP at 12 w was significantly higher in PC+TEC vs. PC alone (Table; mean difference 13.9; P= 0.02). Conclusions: Higher intensity of PC with closer monitoring showed within-group improvement in symptoms and QOL, while PC alone had some symptom reduction but no QOL improvement. Further studies are needed to confirm the QOL benefit of PC + TEC over PC alone. Clinical trial information: NCT04989556 . [Table: see text]