Life-limiting Conditions Research Articles

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.

Self-care towards the end of life: A systematic review and narrative synthesis on access, quality and cost.

Policy and practice encourages patients to engage in self-care, with individual patient management and remote monitoring of disease. Much is known of the moderate stage of chronic disease, without a clear understanding of how self-care applies towards the end of life. To review the current evidence on practices of self-care in life-limiting conditions and its impacts on healthcare utilisation, quality of life and associated costs. We systematically searched 10 scientific databases (MEDLINE, CINAHL, Embase, PsycINFO, Cochrane Central, Cochrane Database of Systematic Reviews, Scopus, Sociological Abstracts, Social Work Abstracts and Health Management Information Consortium) from inception to October 2023 with citation and hand searching. A narrative synthesis was undertaken, with quality and relevance assessed using Gough's Weight of Evidence framework. Titles and abstracts were independently screened by three researchers. Findings from 33 studies revealed self-care as increasingly burdensome or unfeasible towards the end of life, with patients delaying use of professional care. Self-care became increasingly burdensome for patients, carers and professionals as illness progressed. Self-monitoring may exacerbate hospitalisations as patients delayed seeking professional help until crises arose. Findings regarding quality were inconclusive, with some evidence suggesting that self-care can decrease care costs. This review has shown that research on self-care is an evolving area of study, with a current focus on acute care and hospitalisations. Future research should seek to provide a more complete account of the relation between self-care and non-acute care use, and quality, with further efforts to study self-care costs incurred through self-funding.

Non-invasive respiratory support in children and young adults with complex medical conditions in pediatric palliative care

ObjectiveDyspnoea and sleep-disordered breathing (SDB) are common in children with life-limiting conditions but studies on treatment with non-invasive ventilation (NIV) or continuous positive airway pressure (CPAP) are scarce. The aim...

A Mixed Methods Systematic Review of the Effectiveness, Acceptability, and Feasibility of Advanced Care Plans for Older Adults Without Life-Limiting Conditions

Context: Advance care planning (ACP) is a comprehensive procedure aimed at helping individuals understand and articulate their values, life goals, and preferences concerning future medical treatment. Despite extensive research on ACP in populations with terminal illnesses, dementia, and those in long-term care, there is a lack of focus on its impact among older adults without life-limiting conditions. Objectives: To investigate the effectiveness, acceptability, and feasibility of ACP for older adults without life-limiting conditions. Methods: We searched 11 electronic databases, spanning from inception to November 2023, complemented by extensive grey literature and reference searches. Rigorous quality assessments were conducted using the Mixed Methods Appraisal Tool (MMAT). Our approach adopted a dynamic convergent mixed-methods design, incorporating thematic and narrative synthesis. Findings: From over 12,600 citations, a total of 16 studies, comprising four randomised controlled trials (RCTs), nine qualitative studies, and three mixed methods studies met the inclusion criteria. Limited findings indicate that ACP interventions are generally effective in improving document completion rates and reducing hospital readmissions. Acceptability and feasibility of these interventions were high, although significantly influenced by cultural and religious factors. Limitations: Evidence supporting the effectiveness, acceptability, and feasibility of ACP in reducing unplanned hospital admissions in older adults without life-limiting conditions was limited. We excluded observations based on unwell older people, though some material with unclear distinctions may have been included. Quality assessments revealed that one of four RCTs had a high risk of bias, three had unclear risks; all nine qualitative studies had low risk; and one of three mixed methods studies had low risk while two had unclear risks. Implications: Further targeted research is necessary to assess the intervention’s value for this population. Rigorous real-world evidence studies involving older adults without life-limiting conditions and their proxies is crucial to enabling providers to tailor ACPs to diverse populations, whilst respecting individuals’ religious and cultural beliefs.

Hope pluralism in antenatal palliative care

When parents face the distressing news during pregnancy that their baby is affected by a serious medical condition that will likely lead to the baby’s death before or soon after...

Illness-related communication between siblings and parents of children with chronic illness and life-limiting conditions: A qualitative analysis.

Having a brother or sister who has a chronic illness (lasting >6 months and requiring long-term care) or life-limiting condition (LLC; where cure is highly unlikely and the child is expected to die) has major impacts on siblings. Parent-sibling illness-related communication may contribute to siblings' capacity to cope. In this study, we aimed to explore parent-sibling illness-related communication, from the perspectives of parents and siblings. We also aimed to qualitatively compare participants' responses according to illness group (chronic illness vs. LLCs). We collected qualitative data from siblings (32 with a brother/sister with a chronic illness, 37 with a brother/sister with an LLC) and parents of a child with a chronic illness (n = 86) or LLC (n = 38) using purpose-designed, open-ended survey questions regarding illness-related communication. We used an inductive qualitative content analysis and matrix coding to explore themes and compare across illness groups. Two-thirds of siblings expressed satisfaction with their family's illness-related communication. Siblings typically reported satisfaction with communication when it was open and age-appropriate, and reported dissatisfaction when information was withheld or they felt overwhelmed with more information than they could manage. Parents generally favored an open communication style with the siblings, though this was more common among parents of children with an LLC than chronic illness. Our findings show that while many siblings shared that they felt satisfied with familial illness-related communication, parents should enquire with the siblings about their communication preferences in order to tailor illness-related information to the child's maturity level, distress, and age.

Referral to pulmonary rehabilitation and palliative care services in people with idiopathic pulmonary fibrosis in England, 2010–2019

The benefits of pulmonary rehabilitation (PR) and palliative care (PC) as non-pharmacological therapies for people with idiopathic pulmonary fibrosis (IPF) are increasingly being recognised but in the UK the proportion of people with this life-limiting condition who are referred to such services is thought to be low. This retrospective cohort study aimed to describe trends in referrals to PR and PC services among people with IPF over a 10-year period and to identify factors associated with non-referral. Our study cohort was drawn from the UK’s pseudonymised Clinical Practice Research Datalink (CPRD) Aurum primary care database and comprised 17,071 individuals diagnosed with IPF between 2010 and 2019. While 12.0% of IPF patients were offered a referral to PR, less than 2% completed a PR programme. Around a fifth (19.4%) received a referral to generic PC support services; however, this is well below reported PC referral rates for lung cancer patients. Moreover, the majority of PC referrals occurred late; among those who died, 31% were referred within a month and 70% within 6 months of death. Referrals to PR and PC had however increased (by around 2–fold and 4-fold, respectively) over the course of the study period. Factors associated with non-referral to PR included female sex, older age and co-diagnosis of dementia; barriers to PC referral included being female or of Asian or Black ethnicity. We also found evidence of regional differences in referrals. These findings confirm that PR and PC service provision for people with IPF across England is suboptimal.

The Role, Contribution and Impact of Independent Nurse Prescribers and Advanced Nurse Practitioners to the Children's Hospice Workforce

The care needs of babies, children and young people who use children's hospices have changed over the last decade, with children living for longer, with more complexity. Children's hospice workforces have evolved to continue to meet these needs, including a growth in the number of nurses working at specialist and advanced levels, particularly prescribing. A 15-question survey was sent to all 54 UK children's hospices, which aimed to explore the impact of independent nurse prescribing, and specialist and advanced level nursing practice in UK children's hospices. Forty-one organisations responded, representing 76% of UK children's hospices. Increased autonomy and the ability to respond to the dynamic needs of families, and enabling family choice was recognised and valued by prescribers. Challenges included the breadth of needs of children with life-limiting conditions, and the use of medicines that are either unlicenced or used off-licence. Access to clinical supervision and continuing professional development were highlighted as enablers of prescribing practice.

Perceived impact of pediatric palliative care: caregiver's perspective.

Caregivers of children with complex chronic diseases (CCD) or life-limiting conditions (LLC) experience heightened strain. Understanding their concerns is essential for effective support, particularly in pediatric palliative care (PPC) where compassionate support is crucial. Amid substantial growth in PPC services in Portugal, assessing the effectiveness of care in addressing these concerns and adapting to the evolving needs of parents is imperative. The aim of this study was to perceive the impact of PPC from the caregivers' perspective. Participants consisted of children with CDD or LLC and their caregivers followed by the PPC team. Institutionalized children were excluded. Our mixed-methods study involved analyzing sociodemographic characteristics and assessing caregiver and child well-being using quantitative data and explored caregiver concerns and the impact of PPC through qualitative data obtained from semi-structured interviews. We included 43 children and caregivers. Caregivers (90.6% mothers; mean age 40) often experience fatigue (90.7%) although they rarely feel exhausted (67.4%). Sleep disturbances (58.1%) are the children's most frequent perceived symptom. Seven categories emerge from caregivers' concerns. Among the five categories arising from caregivers' perceived impact of PPC integration, 95.3% prioritize enhanced contact with healthcare professionals. Increased support to facilitate caregiver rest and early referral emerges as primary suggestions for improving PPC. The PPC appears to be effective in alleviating parents' primary concerns, highlighting the crucial importance of early referral. Implementing strategies to provide respite for caregivers and closer monitoring of these children becomes a priority to improve the quality of life for this inherently intertwined dyad, the child-family unit.

Four Years in, What Are the Research Priorities for Long COVID? A Research Priority-Setting Partnership Between People With Lived Experience, Carers, Clinicians and Researchers.

Long COVID is a life-limiting condition that affects 65 million people worldwide. It devastates lives with uncertain illness trajectories, and yet, there are many research uncertainties as there is a lack of understanding of its causes, effective treatments and management plans. We set out to identify current research priorities for people with Long COVID, carers, healthcare professionals and researchers. A systematic literature review and previous Long COVID priority-setting exercises identified three broad under-researched areas of Long COVID research within the fields of Public Health and Health Services Research: symptoms; managing day-to-day life; and the emotional impact of Long COVID. We disseminated an elicitation survey that asked for research questions in these areas; responses were analysed and summarised into 42 research questions. A survey was then disseminated, asking respondents to prioritise these 42 questions. Workshops were held with people with Long COVID, carers, healthcare professionals and researchers to analyse responses and agree the top 10 priorities. The top priorities in order were pharmacological treatment of Long COVID; understanding the pathophysiology; nonpharmacological symptom management; improving public and professional understanding of Long COVID; understanding of the long-term risks of Long COVID; improving financial and social supports; improving understanding of postviral syndromes; diagnostics; service redesign/pathways; and the well-being of children with Long COVID. Four years into the pandemic, there is an emphasis on the need for research on treatment, understanding and support for people living with Long COVID. People with Long COVID and carers were involved in the study design, survey design, dissemination, data analysis, interpretation and reviewing and editing the manuscript.

Influences of Specialist Palliative Care Team Input, Advance Care Planning, Non-Invasive Ventilation and Gastrostomy Status on Unscheduled Hospital Admissions and Place of Death for People with Motor Neuron Disease: A Retrospective Cohort Analysis.

Motor neuron disease is a rapidly progressing neurological condition. People with life-limiting conditions generally prefer to die at home and avoid hospital admissions, with Specialist Palliative Care Team involvement often pivotal. Our aim was to investigate the role of advance care planning, Specialist Palliative Care Team input and other relevant variables on place of death and unscheduled hospital admissions in a Scottish population of people with motor neuron disease. Methods: National CARE-MND audit data, primary and secondary care data, and local Palliative Care records were interrogated. Chi-square, point-biserial correlation and binary logistic regression analysed associations (p < 0.05 statistically significant). Participants (188) were deceased, having a verified motor neuron disease diagnosis between 2015-2017, diagnosis occurring ≥28 days before death. Results: Advance care planning and Specialist Palliative Care Team input of ≥28 days were associated with increased odds of dying outside hospital (BLR:OR 3.937, CI 1.558-9.948, p = 0.004 and OR 2.657, CI 1.135-6.222, p = 0.024 respectively). Non-invasive ventilation decreased the odds of dying outside hospital (BLR:OR 0.311, CI 0.124-0.781, p = 0.013). Having a gastrostomy increased odds of ≥1 admissions in the last year of life (BLR:OR 5.142, CI 1.715-15.417, p = 0.003). Statistical significance was retained with removal of gastrostomy-related complications. Conclusion: Early Specialist Palliative Care input and advance care planning may increase the likelihood of death outside of hospital for persons with motor neuron disease. Further research is warranted into barriers of facilitating death outside of hospital with home non-invasive ventilation use and the association between gastrostomy status and unscheduled admissions.

Barriers to initiating and implementing palliative and end-of-life care for children with life-limiting conditions: a mixed-methods study in a UK children’s hospital

BackgroundTo ensure that children with life-limiting conditions (LLC) and their families have access to a palliative care pathway from diagnosis to death and bereavement, a better understanding of the challenges...

Beyond presence of symptoms: Self-reported psychosocial distress interference among outpatient youth with cancer and other life-limiting conditions.

Youth with life-limiting conditions face significant psychosocial challenges (e.g., symptoms of anxiety, depression, and pain) throughout illness and treatment. Without appropriate intervention, this can negatively affect long-term outcomes (e.g., disease management, health-related quality of life). Prompt identification and appropriate attention to distress can mitigate these effects. We aimed to determine the prevalence and severity of distress interference among outpatient youth with cancer and other life-limiting conditions, using the Checking IN screener. Within a larger study across four hospital centers, English-speaking pediatric outpatients aged 8-21, and a caregiver-proxy-reporter, completed a brief distress screener. Descriptive analyses were used to characterize the sample and evaluate reported distress symptoms. Checking IN was completed by 100 participants, aged 8-21 (M=14.27, SD=3.81); caregivers completed an equivalent proxy screener. Youth most frequently endorsed fatigue (moderate: n=50, 50.0%; high: n=21, 21.0%), paying attention (moderate: n=45, 45.0%; high: n=16, 16.0%), and sleep difficulty (moderate: n=46, 46.0%; high: n=13; 13.0%) as problematic. Caregivers proxy reported fatigue (moderate: n=46, 46.0%; high: n=32, 32.0%), worry (moderate: n=56, 56.0%; high: n=10, 10.0%), and sleep difficulty (moderate: n=47, 47.0%; high: n=14; 14.0%) as most problematic. Group differences between youth and caregiver responses were not significant. Youth self-report via Checking IN can detect psychosocial distress interference. By directing resources based on real-time assessment of symptom interference, there is potential to simplify outpatient psychosocial screening and improve referral timeliness and specificity, thus allowing for more effective attention to evolving symptoms of distress.

‘Listen to our voice!’ using co-creation and art-based methods to explore the welfare and wellbeing of siblings of children with life-limiting conditions

ABSTRACT Sibling of children with a life-limiting condition (LLC) face challenge. Yet there is relatively little research specifically investigating the psychosocial impact on siblings living with a child with an LLC. A qualitative participatory methodology helped explore the experiences of nine siblings, aged 6–16, of children with an LLC: their perception of their wellbeing, coping strategies and needs, in England, UK. Data were gathered through an amalgamation of creative art activity and focus group audiotaped discussion. Three themes were identified; ‘dealing with uncertainty and stress’; ‘coping with being different’, and ‘spill over between home and school’. Despite the adversity, these children experienced, because of caring responsibilities and worry about their sibling with LLC, they demonstrated resilience and maturity. They did, however, experience schooling challenges and found making friends difficult. They felt school could help if teacher awareness was promoted and they had assistance in connecting to peers with shared life experiences.

Clinical and socio-demographic profile of children receiving pediatric palliative care in a tertiary hospital of a metropolitan city in India.

Pediatric palliative care is a holistic care of children suffering from life-threatening or life-limiting illnesses and encompasses care of a child's body, mind, and spirit and involves giving support to the family. According to the Global Atlas of Palliative Care, 6% of the global need for palliative care is in children. In order to provide palliative care, one needs to identify and diagnose the conditions requiring palliative care. There has always been a confusion in identifying pediatric conditions requiring palliative care. There is a lot of inconsistency in the diagnosis of such conditions particularly in pre-verbal patients. This study attempts to generate more data about the common palliative care conditions and complaints with which the children present to tertiary care hospitals. To study the socio-demographic details, clinical profile, CCC (complex chronic conditions) designation, and the ACT/ RCPCH (Association for Children with Life-threatening or Terminal Conditions and the Royal College of Pediatrics and Child Health) classification of children suffering from chronic conditions requiring palliative care. The study was conducted as a single-center retrospective observational study of pediatric patients enrolled for palliative care at a tertiary care hospital in a metropolitan city in India from 01.06.2021 to 31.06.2022. The total sample size was 400. The socio-demographic data and the clinical profile were recorded from the case records of all the 400 patients. Classification of the conditions was done as per the CCC as well as the ACT/ RCPCH classification system. The mean age in our study was 5.15years and there was a slighter male (59.5%) preponderance. They presented in OPDs with acute symptoms such as fatigue and fever, and they had other symptoms like tightness of the body, constipation, seizures, and difficulty in swallowing. Majority of the children (55%) were suffering from neurologic and neuromuscular conditions as per CCC followed by hematologic and immunologic conditions (10%). Category 4 (irreversible but non-progressive conditions causing severe disability, leading to susceptibility to health) was reported as the most common category according to the ACT/RCPCH. Conclusion: Children suffering from chronic disease conditions requiring palliative care usually suffer from multiple symptoms which affect their daily life. As most of the patients belong to category 4 according to ACT/RCPCH which is an irreversible but non-progressive life-limiting condition, the course of the disease is prolonged, therefore requiring comprehensive care and services for a long time. It is necessary to establish more pediatric palliative care units to address the needs of such children. What is known: • Pediatric palliative care is a specialized area within palliative care, which focusses on the needs of children with life-limiting illnesses. • Data on pediatric palliative care has largely been limited to oncological conditions. There is a paucity of literature documenting the needs among children suffering from non-cancerous chronic conditions. What is new: • This study provides vital information with respect to palliative care burden among children mainly suffering from non-oncological conditions. • It also provides clinical and socio-demographic profile of the children suffering from chronic life-limiting conditions requiring palliative care in a tertiary hospital setting in a LMIC (low- or middle-income country).

Evaluation of a perinatal palliative care program by SWOT analysis.

Perinatal Palliative Care (PPC) is individualized medical-nursing care aimed at improving the quality of life of newborns with life-limiting conditions and to support their families. This study draws on the analysis of the experience gained over ten years by a service of PPC called the "Percorso Giacomo" (PG). We employed a SWOT analysis to identify the strengths, weaknesses, opportunities, and threats of the PG through a systematic retrospective review of 48 cases followed by the program over the course of 10 years, 21 unsolicited parents' narrative and 27 experts' point of view. Main strengths of the program were communication and parents' involvement in shared decision-making. Main weaknesses included lack of knowledge of the presence and the role of the PG and lack of resources. For opportunities, the PG proved to be an innovative choice for pregnancies with a fetal life-limiting diagnosis, however threats were identified such as lack of knowledge of PPC and delayed referrals. The analysis by SWOT method of the 10-year experience of the PG allowed the identification of limitations and areas of improvement, however demonstrated that the PG provided beneficial services to women faced with fetal life-limiting diagnoses. Perinatal Palliative Care (PPC) practice and literature on this subject is still limited. This study offers features of the 10-year experience of the Percorso Giacomo (PG), a service of PPC, through a SWOT analysis. By identifying strengths, weaknesses, opportunities and threats of the PG, the study shows limitations and areas of improvement but also benefits of a PPC service to women with fetal diagnosis of life-limiting condition and may allow replication in other institutions.

Parent Narratives Provide Perspectives on the Experience of Care in Trisomy 18.

Trisomy 18 syndrome, also known as Edwards syndrome, is the second most common autosomal chromosome syndrome after Down syndrome. Trisomy 18 is a serious medical disorder due to the increased occurrence of structural defects, the high neonatal and infant mortality, and the disabilities observed in older children. Interventions, including cardiac surgery, remain controversial, and the traditional approach is to pursue pure comfort care. While the medical challenges have been well-characterized, there are scant data on the parental views and perspective of the lived experience of rearing a child with trisomy 18. Knowledge of the parental viewpoints can help clinicians guide families through decision-making. Our aim was to identify parents' perspectives by analyzing a series of narratives. In this qualitative study, we collected 46 parent narratives at the 2015 and 2016 conferences of the Support Organization for Trisomy 18 & 13 (SOFT). The participants were asked to "Tell us a story about your experience." Inductive content analysis and close reading were used to identify themes from the stories. Dedoose, a web-based application to analyze qualitative data, was used to code themes more systematically. Of the identified themes, the most common included Impact of trisomy 18 diagnosis and Surpassing expectations. Other themes included Support from professionals, A child, not a diagnosis, and Trust/lack of trust. We examined the voice and the perspectives of the parents in their challenges in caring for their children with this life-limiting condition. The exploration of the themes can ideally guide clinicians in their approach to the counseling and care of the child in a shared decision-making approach.

The PROgnostic ModEl for chronic lung disease (PRO-MEL): development and temporal validation

BackgroundPatients with chronic lung diseases (CLDs), defined as progressive and life-limiting respiratory conditions, experience a heavy symptom burden as the conditions become more advanced, but palliative referral rates are low and late. Prognostic tools can help clinicians identify CLD patients at high risk of deterioration for needs assessments and referral to palliative care. As current prognostic tools may not generalize well across all CLD conditions, we aim to develop and validate a general model to predict one-year mortality in patients presenting with any CLD.MethodsA retrospective cohort study of patients with a CLD diagnosis at a public hospital from July 2016 to October 2017 was conducted. The outcome of interest was all-cause mortality within one-year of diagnosis. Potential prognostic factors were identified from reviews of prognostic studies in CLD, and data was extracted from electronic medical records. Missing data was imputed using multiple imputation by chained equations. Logistic regression models were developed using variable selection methods and validated in patients seen from January 2018 to December 2019. Discriminative ability, calibration and clinical usefulness of the model was assessed. Model coefficients and performance were pooled across all imputed datasets and reported.ResultsOf the 1000 patients, 122 (12.2%) died within one year. Patients had chronic obstructive pulmonary disease or emphysema (55%), bronchiectasis (38%), interstitial lung diseases (12%), or multiple diagnoses (6%). The model selected through forward stepwise variable selection had the highest AUC (0.77 (0.72–0.82)) and consisted of ten prognostic factors. The model AUC for the validation cohort was 0.75 (0.70, 0.81), and the calibration intercept and slope were − 0.14 (-0.54, 0.26) and 0.74 (0.53, 0.95) respectively. Classifying patients with a predicted risk of death exceeding 0.30 as high risk, the model would correctly identify 3 out 10 decedents and 9 of 10 survivors.ConclusionsWe developed and validated a prognostic model for one-year mortality in patients with CLD using routinely available administrative data. The model will support clinicians in identifying patients across various CLD etiologies who are at risk of deterioration for a basic palliative care assessment to identify unmet needs and trigger an early referral to palliative medicine.Trial registrationNot applicable (retrospective study).

Dronabinol Is Not a Game Changer in Pediatric Palliative Care: Results from a Retrospective Study.

Patients with life-limiting conditions (LLCs) often suffer from restlessness, spasticity, pain, and seizures. Dronabinol (DRB) may have a relieving effect; however, data on the effectiveness of DRB in children with LLCs are limited to outpatients. The aim of this study was to assess the efficacy and safety of DRB. Retrospective analysis of inpatients. From 2011 to 2021, 1219 patients were admitted. Of these, 63 patients (63.5% male, age: 10.4 (SD = 6.3) years) were treated with DRB; 96.8% had a neurological disease, and 26 patients were started on DRB (group A), while 37 were admitted with existing DRB (group B). The effective doses were 0.21 (SD = 0.11) in group A and 0.48 (SD = 0.5) mg/kg/BW/day in group B (p = 0.01). Subjective response rates to DRB in both groups (good/moderate effect) were 9.5%/38.1% for spasticity and 1.6%/25.4% for restlessness. However, no reduction in seizures, restlessness, or demand medication was observed in 24 h protocols when patients started DRB in group A. Three patients experienced severe side effects (e.g., respiratory depression). Other side effects included fatigue (22.2%) and behavioral problems (14.3%). Subjective positive effects could not be confirmed by more objective data. Side effects can be severe. Thus, DRB should be started in a well-monitored setting and only with clear indications.

Veterans' use of inpatient and outpatient palliative care: The national landscape.

Palliative care improves the quality of life for people with life-limiting conditions, which are common among older adults. Despite the Veterans Health Administration (VA) outpatient palliative care expansion, most research has focused on inpatient palliative care. This study aimed to compare veteran characteristics and hospice use for palliative care users across care settings (inpatient vs. outpatient) and dose (number of palliative care encounters). This national cohort included veterans with any VA palliative care encounters from 2014 through 2017. We used VA and Medicare administrative data (2010-2017) to describe veteran demographics, socioeconomic status, life-limiting conditions, frailty, and palliative care utilization. Specialty palliative care encounters were identified using clinic stop codes (353, 351) and current procedural terminology codes (99241-99245). Of 120,249 unique veterans with specialty palliative care over 4 years, 67.8% had palliative care only in the inpatient setting (n = 81,523) and 32.2% had at least one palliative care encounter in the outpatient setting (n = 38,726), with or without an inpatient palliative care encounter. Outpatient versus inpatient palliative care users were more likely to have cancer and less likely to have high frailty, but sociodemographic factors including rurality and housing instability were similar. Duration of hospice use was similar between inpatient (median = 37 days; IQR = 11, 112) and outpatient (median = 44 days; IQR = 14, 118) palliative care users, and shorter among those with only one palliative care encounter (median = 18 days; IQR = 5, 64). This national evaluation provides novel insights into the care setting and dose of VA specialty palliative care for veterans. Among veterans with palliative care use, one-third received at least some palliative care in the outpatient care setting. Differences between veterans with inpatient and outpatient use motivate the need for further research to understand how care settings and number of palliative care encounters impact outcomes for veterans and older adults.