Outpatient Palliative Care Services Research Articles

Telemedicine Plus Standard Care Versus Standard Care Only in Specialized Outpatient Palliative Care: A Randomized Controlled Noninferiority Trial.

Background: Patients suffering from incurable diseases are more likely to die in the hospital than at home. Specialized outpatient palliative care (PC) may be able to counteract this tendency. Similarly, potential benefits of telemedicine in health care were scientifically reported. The aim of this research was to compare patients receiving specialized outpatient PC plus telemedicine with those receiving standard specialized outpatient PC only. In this study, telemedicine is assumed to decrease the number of home visits and therefore should not be considered a mere add-on. Methods: This is a randomized controlled noninferiority trial. Recruitment lasted between January 2020 and October 2021. Quality of care was evaluated using the Integrated Palliative Care Outcome Scale (IPOS) at day 0, 7, and 14 after randomization. Change from day 0 to 7 was defined as the primary outcome (noninferiority margin = 4 points). This study was conducted in an urban setting in collaboration with a university hospital and a local specialized outpatient PC service. Results: A total of 196 patients were screened with 34 patients included (18 telemedicine/16 standard care). The mean change in the total score of the IPOS from day 0 to 7 amounted to -1.8 ± 3.9 (telemedicine) versus 1.2 ± 5.7 (standard care). The telemedicine group was statistically not relevantly inferior to the standard care group (t-test for noninferiority, p = 0.005). Conclusions: Although, due to COVID-19, the sample size remained rather small, our findings indicate that telemedical approaches offer a promising and equally effective option to provide specialized outpatient PC. Clinical Trial Registration Number: NCT06054048.

Family Caregivers Perceptions of Patient’s Symptom Burden and Satisfaction with Palliative Care Services in a Tertiary Care Center in Saudi Arabia

This study aimed to explore the family caregivers (FCs) perception of patients’ symptom burden as well as their experience and satisfaction with specialized palliative care services (PCS) in a tertiary care center in Kingdom of Saudi Arabia (KSA). Methods: A cross-sectional design assessed patients known to the PCS in a tertiary care center in Saudi Arabic from May 2023 to September 2023. FCs perceptions of patient’s symptom burden and satisfaction with PCS were studied through the Family Satisfaction with End-of-Life Care Scale (FAMCARE-2) and Arabic Questionnaire for Symptom Assessment (AQSA). Results: A convenience sample of 264 FCs agreed to participate (response rate = 94%). Approximately half of the participants were male (n=146; 55.7%). Participants were mostly aged between 30 to 50 years (n =148; 56%). Approximately half were receiving disease-modifying treatments. 101 (38.3%) had a Do-Not-Attempt-Resuscitation (DNAR) order. There was high satisfaction with how the services respected the dignity FCs (M = 4.6; SD=0.6). FCs were less satisfied with ‘the practical assistance provided by the PCS’ (M = 4.1; SD = 0.9). Satisfaction was higher in the outpatient setting (M = 4.3, SD = 0.7). The most severe symptom reported by FCs was ‘tiredness’, followed by ‘pain’. The mildest ones were ‘shortness of breath’, followed by ‘nausea/vomiting’. Conclusion: Overall, FCs have reported a positive experience with inpatient and outpatient PCS. FCs' greater satisfaction was observed in the outpatient setting with the possible rationale that inpatients are often more unstable and symptomatic.

Outpatient Palliative Care Service Involvement: A Five-Year Experience from a Tertiary Hospital in Switzerland.

The value of early integration of palliative care has been demonstrated increasingly for the past years in both oncological and nononcological diseases. Outpatient palliative care services might represent a feasible approach to implement supportive care in early disease. In this study, we aimed at evaluating which patients use and benefit from outpatient palliative care services, which symptoms are addressed most, and which support services are installed in this early phase of disease. We retrospectively analyzed the entire patient collective of a recently developed palliative care outpatient clinic within the leading university hospital in Switzerland for a period of five years. Sociodemographics, symptoms, and information on disease as well as patient-reported outcomes were retrieved from the electronic patient files. Demographic and clinical data were analyzed by descriptive statistics between groups and survival was analyzed by means of Kaplan-Meier estimates and log-rank test. We report on 642 consultations of 363 patients between 2016 and 2020. Patients had a mean of 1.8 visits (range 1-10), with n = 340 patients (93.7%) of patients suffering from an oncological disease. Overall symptom load was high, with n = 401 (73.7%) of patient-reported outcomes reporting two or more symptoms. Distress levels of 5 or higher were reported in n = 78 (30.4%) of available patient-reported outcomes. Independent of the origin of primary disease and the length of the disease trajectory, patients were referred to the palliative care service in median only four months before death. We identify high symptom load and distress in the outpatient palliative patient population. Patients benefitted from supportive medication, improvement of ambulatory support systems and advance care planning, and more than one-third of patients remained in follow-up, indicating a good acceptance of the service. Overcoming the overall late referral could, however, further increase the quality of life at earlier stages of disease.

Differences in patients accessing inpatient versus outpatient palliative care at time of referral at a cancer centre

Outpatient palliative care clinics are a new and developing area of service delivery that can respond to increasing demand and facilitate earlier contact in the illness trajectory. Work is needed to standardise the criteria for referral to outpatient palliative care services and clarify which patients are likely to benefit the most from this mode of support. This study aimed to describe the demographic, clinical and symptom profile, and survival of patients referred to a newly established hospital-based integrated palliative care program. Comparisons were made between patients initially seen as outpatients versus those seen as inpatients. A retrospective population was identified from routinely collected hospital admitted inpatient and ambulatory databases comprising adult cancer patients receiving a new referral to the service during a 6-month period. Patients were grouped into two cohorts according to the setting of their first palliative care assessment and followed to death or study censor date. During the study period, 473 new referrals were made comprising 229 (48%) patients initially seen as outpatients and 244 (52%) initially seen as inpatients. The outpatient cohort had higher performance status, experienced higher symptom burden, lived longer, had fewer inpatient admissions, and received earlier referral to palliative care resulting in greater palliative care involvement up to their death (all p < .05). Early palliative care can be effectively delivered by an outpatient palliative care service for cancer patients who are experiencing symptom burden but are otherwise functional. These cases lived longer and had fewer subsequent inpatient visits, demonstrating the preliminary effectiveness of this integrated service.

Utilising literature and systems theory to explore the intersections between policy, practice and equity of access to palliative care for older adults in Aotearoa New Zealand

&#x0D; Older adults are the ‘disadvantaged dying’ within palliative care (Gott, Ibrahim, &amp; Binstock, 2011). International and national research indicates those older in age are negatively impacted when accessing inpatient and outpatient palliative care services. As a Palliative Care Social Worker within a hospice multidisciplinary team, I primarily work alongside patients who are older adults, their family/whānau, and caregivers. Observations within practice foregrounded this examination of palliative care and inequity of access amongst older adults that includes Māori and LGBTQ+ perspectives, COVID-19 pandemic implications, and the impacts of inequitable access for caregivers and family/whānau. Inequity is explored within academic literature, national and international strategic documents, and legislative frameworks. Utilising a social work lens to examine the impacts of inequity and ageism, this article raises awareness for equitable access to palliative care and end-of-life services for older adults.

Expert Perspectives on the Additional Benefit of Day Hospices and Palliative Day Care Clinics in Germany: A Qualitative Approach.

Background: In Germany, hospice and palliative care is well covered through inpatient, outpatient, and home-based care services. It is unknown if, and to what extent, there is a need for additional day care services to meet the specific needs of patients and caregivers. Methods: Two day hospices and two palliative day care clinics were selected. In the first step, two managers from each facility (n = 8) were interviewed by telephone, using a semi-structured interview guide. In the second step, four focus groups were conducted, each with three to seven representatives of hospice and palliative care from the facilities' hospice and palliative care networks. Interviews and focus groups were audio recorded, transcribed verbatim and analyzed using qualitative content analysis. Results: The interviewed experts perceived day care services as providing additional patient and caregiver benefits. Specifically, the services were perceived to meet patient needs for social interaction and bundled treatments, especially for patients who did not fit into inpatient settings (due to, e.g., their young age or a lack of desire for inpatient admission). The services were also perceived to meet caregiver needs for support, providing short-term relief for the home care situation. Conclusions: The results suggest that inpatient, outpatient, and home-based hospice and palliative care services do not meet the palliative care needs of all patients. Although the population that is most likely to benefit from day care services is assumed to be relatively small, such services may meet the needs of certain patient groups more effectively than other forms of care.

Routine patient assessment and the use of patient-reported outcomes in specialized palliative care in Japan

BackgroundDiscrepancies in symptom assessment between providers and patients are reported in cancer care, and the use of patient-reported outcome measures (PROMs) has been recommended for patients receiving palliative care. However, the status of the routine use of PROMs in palliative care in Japan is presently unclear. Therefore, this study aimed to clarify this complex question. To this end, we administered a questionnaire survey either online or via telephone interviews (questionnaire: sent to 427 designated cancer hospitals, 423 palliative care units [PCUs], and 197 home hospices; interviews: conducted at 13 designated cancer hospitals, nine PCUs, and two home hospices).ResultsQuestionnaires were returned from 458 institutions (44% response rate). We found that 35 palliative care teams (PCTs, 15%), 66 outpatient palliative care services (29%), 24 PCUs (11%) and one (5%) home hospice routinely used PROMs. The most frequently implemented instrument was the Comprehensive Care Needs Survey questionnaire. Moreover, 99 institutions (92%) that routinely used PROMs responded these instruments as useful in relieving patients’ symptoms; and moreover, the response rate in regard to usefulness in symptom management was higher than that of institutions that did not routinely use PROMs (p = 0.002); > 50% of the institutions that routinely used PROMs stated that use of these instruments was influenced by disease progression and patients’ cognitive function. Moreover, 24 institutions agreed to be interviewed, and interviews demonstrated the benefits of and the barriers to the implementation of PROMs. Effective methods used in the implementation of PROMs were introduced as efforts to reduce the burden placed on patients and to promote healthcare providers’ education in the use of PROMs.ConclusionsThis survey quantified the status of the routine use of PROMs within specialized palliative care in Japan, revealed barriers to wider PROM use, and identified needed innovations. Only 108 institutions (24%) routinely used PROMs within specialized palliative care. Based on the results of the study, it is necessary to carefully consider the usefulness of PROs in clinical palliative care, perform careful selection of PROMs according to the patient's condition, and evaluate how specifically to introduce and operate PROMs.

Abstract P5-07-11: Referral patterns of metastatic breast cancer patients to Palliative Care team at a Cancer Center in Brazil

Abstract Introduction: Breast cancer is the most common cancer in women and the leading cause of cancer- related death in women worldwide. The high prevalence of physical and psychosocial suffering among breast cancer patients and their families justifies the need for an early interdisciplinary approach by a palliative care team. The effectiveness of early palliative care for patients with advanced cancer has been demonstrated in many studies. Early referral to outpatient palliative care services improves symptom control, reduces suffering and improves quality of end-of-life care. Aim: Evaluation of referral patterns of metastatic breast cancer patients to the outpatient embedded palliative care team. Methods: We retrospectively retrieved data from electronic medical records of patients who were treated at a private community oncology practice in Brazil who died from metastatic breast cancer during the years of 2018 until 2021.We evaluated the patient’s follow-up time by the palliative care team (follow-up &amp;gt; 12 weeks or not) and the year of referral to the service (pre-2020 vs 2020 and later) associated to the service referral type: Late referral (more than 8 weeks of metastatic diagnosis) or early referral. Each group was followed-up by cancer physicians and after referral was also followed-up by a palliative care multidisciplinary team who regularly evaluated cancer patients during their treatments at outpatient setting. During COVID-19 pandemic, some patients were evaluated by telemedicine appointments. We performed univariate comparisons analysis by Fisher’s Exact Test. p &amp;lt; 0.1 was deemed as statistically significant. Results: Of the 211 patients whose data were assessed, 99 patients were referred to Palliative Care team before 2020 and 112 patients after 2020. 13.1% of patients pre-2020 received early palliative care versus 33.9% of patients in the post-2020 referral group, resulting in a 3.37-fold odds of an early palliative care integration after 2020 (OR 3.37, CI95: 1.61 – 7.45; p&amp;lt; 0.001). Overall, 30.4% of longer follow-up patients were an early referral versus 19.3% of the shorter follow-up, resulting in an 82% greater chance (OR 1.82, CI: 0.92-3.63; p&amp;lt; 0.1) of prolonged assistance with early referral. Conclusions: In this analysis, early palliative care integration for patients with metastatic breast cancer has increased after 2019 despite the COVID-19 pandemic, leading to prolonged time of accompaniment by the multidisciplinary palliative care team. This suggests that even in the face of this challenging moment, a mature and consolidated service is offered by the palliative care team. Also, according to previous data in literature, prematurely integration show signs of correlation with better quality of life and death, supporting early palliative care for this group of patients. However, further work is needed to examine the effect of this care model in our cohort. Table: Palliative Care Assistance by time-referral Citation Format: Sarah A. GOMES, Danielle N. Silva, Thais Passarini, Julia A. Petrocchi, Marcela M. de Paula, Julia S. de sá, MatheusCosta e Silva, Tatiana A. Coelho, Rafaella L. de Aquino, Flávia S. Sorice, Patrícia Santos, Daniela Madureira, Erika Martins, Heloísa Cruz, Bruno L. Ferrari. Referral patterns of metastatic breast cancer patients to Palliative Care team at a Cancer Center in Brazil [abstract]. In: Proceedings of the 2022 San Antonio Breast Cancer Symposium; 2022 Dec 6-10; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2023;83(5 Suppl):Abstract nr P5-07-11.

Mapping of Palliative Care Services and Challenges in Implementation of National Program for Palliative Care in Puducherry.

The purpose of this study was to map ongoing palliative care services and describe the characteristics of providers, recipients, level of care, and approach. Second, it seeks to investigate the difficulties encountered in implementing NPPC in the Puducherry district of UT Puducherry. This study aims to review the challenges in its implementation. The study using both quantitative and qualitative design, including geospatial mapping of organisations, describing service delivery characteristics and exploring challenges faced in implementing NPPC, was conducted from July 2021 to January 2022. In-depth interviews were conducted with seven healthcare providers, four patients and three caregivers, as well as key informant interviews with six doctors in administration. Thirteen organisations providing palliative care to population of Puducherry district of union territory Puducherry and neighbouring districts of Tamil Nadu were identified. Mapped organisations were primarily concentrated in urban areas. Morphine was available only at three medical colleges, providing outpatient palliative care services. Non-governmental organisations provided only home-based palliative care services and the hospices provided both in-patient and home-based services. Key barriers perceived by the health system were difficulty in procuring morphine, inadequate personnel and inadequate funding. Few barriers perceived by patients/family were stigma faced in community, psychological challenges and poor quality of care. Palliative care services are mainly available in urban areas and through private hospices. There is a need to implement palliative care program through the public health system to improve the accessibility in the rural areas.

Physio- und Ergotherapie in der deutschen Palliativmedizin – wo stehen wir?

IntroductionPhysical therapy (PT) and occupational therapy (OT) as supportive forms of treatment in palliative care, together with other treatment measures, can create participation for seriously ill patients in the form of a life that is as autonomous as possible until the end of life. However, specially trained staff are needed for the care of palliative patients in order to do justice to the clients’ special life situation. In Germany, no corresponding survey on the subject has so far been conducted. So it is unclear to what extent PT and OT are offered in palliative care structures in this country, which tasks are assigned to the respective professional groups, and what the level of knowledge is that caregivers have about treatment options. AimCompilation of an overview of the provision, need and use of PT and OT in the various areas of palliative care in Germany. If there is a lack of provision, the reasons for this will be identified. MethodsIn this cross-sectional survey, a self-designed 9-item questionnaire was sent out to a total of 260 hospices, 323 palliative care units and 304 specialized outpatient palliative care services (SOPC) listed on the homepage of the German Society for Palliative Medicine (DGP). The respondents’ answers were analysed using a purely descriptive approach. ResultsThe response rate was 439 (49.5%). A total of 434 questionnaires (49%) were included in the analysis. A heterogeneous distribution of PT and OT offers between outpatient, inpatient, and hospice palliative care can be seen, with the outpatient area showing a significantly fewer offerings. 29% of the SOPC teams can offer neither PT nor OT. This is mostly due to a shortage of skilled workers or a lack of funding opportunities. The different areas of responsibility of physiotherapists and occupational therapists are known to the majority of respondents (hospice 87%, palliative care unit 83%, SOPC 81%) and are also reflected in the distribution of tasks between the two professional groups. Especially palliative care units and SOPC teams state that they would like to offer more PT and OT (palliative care units 42% more PT and 58% more OT; SOPC 65% more PT and 50% more OT). DiscussionThis cross-sectional survey is the first of its kind to provide an overview of the PT and OT offerings in the different sectors of German palliative care. In a comparison of the two forms of therapy, occupational therapists are used less frequently than physiotherapists. An international comparison of the study situation also shows that the use of OT in palliative care, in particular, has not yet been implemented satisfactorily. Outside Germany, the main reasons for this are a shortage of specialists and a lack of knowledge about the tasks of OT. ConclusionPT and OT are frequently used treatment options in all areas of German palliative care. In order to better classify structural problems in care, further differentiated surveys should be conducted. Furthermore, a better knowledge base should be created through research and information activities of both professional groups in palliative care.

Utilization of palliative care resource remains low, consuming potentially avoidable hospital admissions in stage IV non-small cell lung cancer: a community-based retrospective review

PurposeEarly referral of patients with stage IV non-small cell lung cancer (NSCLC) to outpatient palliative care has been shown to increase survival and reduce unnecessary healthcare resource utilization. We aimed to determine outpatient palliative care referral rate and subsequent resource utilization in patients with stage IV NSCLC in a multistate, community-based hospital network and identify rates and reasons for admissions within a local healthcare system of Washington State.MethodsA retrospective chart review of a multistate hospital network and a local healthcare system. Patients were identified using ICD billing codes. In the multistate network, 2844 patients diagnosed with stage IV NSCLC between January 1, 2013, and March 1, 2018, were reviewed. In the state healthcare system, 283 patients between August 2014 and June 2017 were reviewed.ResultsReferral for outpatient palliative care was low: 8% (217/2844) in the multistate network and 11% (32/283) in the local healthcare system. Early outpatient palliative care (6%, 10/156) was associated with a lower proportion of patients admitted into the intensive care unit in the last 30 days of life compared to no outpatient palliative care (15%, 399/2627; p = 0.003). Outpatient palliative care referral was associated with improved overall survival in Kaplan Meier survival analysis. Within the local system, 51% (104/204) of admissions could have been managed in outpatient setting, and of the patients admitted in the last 30 days of life, 59% (87/147) experienced in-hospital deaths.ConclusionWe identified underutilization of outpatient palliative care services within stage IV NSCLC patients. Many patients with NSCLC experience hospitalization the last month of life and in-hospital death.

Health Care Utilization in the Last Year of Life in Parkinson Disease and Other Neurodegenerative Movement Disorders.

Neurodegenerative movement disorders are rising in prevalence and are associated with high health care utilization. Generally, health care resources are disproportionately expended in the last year of life. Health care utilization by those with neurodegenerative movement disorders in the last year of life is not well-understood. The goal of this study was to assess the utilization of acute care in the last year of life among individuals with neurodegenerative movement disorders and determine whether outpatient neurology or palliative care affected acute care utilization and place of death. We conducted a retrospective cross-sectional study including health system administrative data in Alberta, Canada, from 2011 to 2017. Administrative data were used to determine place of death and quantify emergency department (ED) visits, hospitalizations, intensive care unit admissions, and outpatient generalist and specialist visits. Diagnoses were classified by 10th revision of the International Classification of Diseases codes. Stata 16v was used for statistical analyses. Among 1439 individuals (60% male), Parkinson disease (n = 1226), progressive supranuclear palsy (n = 78), multiple system atrophy (n = 47), and Huntington disease (n = 58) were the most common diagnoses. The most frequent place of death was in hospital (45.9%), followed by long-term care (36.3%), home (7.9%), and residential hospice (4.0%). Most (64.2%) had >1 ED visit, and 14.4% had >3 emergency department visits. Fifty-five percent had >1 hospitalization, and 23.3% spent >30 days in hospital. Few (2.6%) were admitted to ICU. Only 37.2% and 8.8% accessed outpatient neurologist and specialist palliative care services, respectively. Multivariate logistic regression found the odds of dying at home was higher for those who received outpatient palliative consultation (OR, 2.49, 95% confidence interval [CI], 1.48-4.21, p < 0.001) and were with a longer duration of home care support (OR, 1.0007, 95% CI, 1.0004-1.0009, p < 0.001). There are high rates of in-hospital death and acute care utilization in the year before death among those with neurodegenerative movement disorders. Most did not access specialist palliative or neurologic care in the last year of life. Outpatient palliative care and home care services were associated with increased odds of dying at home. Our results indicate the need for further research into the causes, costs, and potential modifiers to inform public health planning.

Outpatient palliative care utilization and aggressiveness of end-of-life care in women with gynecologic cancers (522)

Outpatient palliative care utilization and aggressiveness of end-of-life care in women with gynecologic cancers (522)

Strengthening Community End-of-Life Care through Implementing Measurement-Based Palliative Care.

The increasing demand for palliative care in New Zealand presents a potential threat to the quality of service delivery. One strategy to overcome this is through the implementation of valid and reliable patient-reported outcome measures. This mixed-methods study aimed to (1) implement measurement-based palliative care (MBPC) in a community palliative care service in Auckland, New Zealand; (2) evaluate the clinical utility of MBPC perceived by clinicians; (3) describe patient characteristics as measured by the Integrated Palliative Care Outcome Scale (IPOS), the Australasian Modified Karnofsky Performance Scale (AKPS), and Phase of Illness (POI); and (4) evaluate the internal consistency of the IPOS. Participants were over 18 years of age from a community outpatient palliative care service. In a phased approach to implementation, healthcare staff were educated on each instrument used for patient assessment. Uptake and internal consistency were evaluated through descriptive statistics. An interpretive descriptive methodology was used to explore the clinical utility of MBPC through semi-structured interviews with seven clinical staff members. Individual patient assessments (n = 1507) were undertaken predominantly on admission, with decreasing frequency as patients advanced through to the terminal phase of their care. Mean total IPOS scores were 17.97 (SD = 10.39, α = 0.78). The POI showed that 65% of patients were in the stable phase, 20% were in the unstable phase, 9% were in the deteriorating phase, and 2% were in the terminal phase. Clinicians reported that MBPC facilitated holistic and comprehensive assessments, as well as the development of a common interdisciplinary language. Clinicians expressed discomfort using the psychosocial and spiritual items. Measurement-based palliative care was only partially implemented but it was valued by staff and perceived to increase the quality of service delivery. Future research should determine the optimal timing of assessments, cultural responsivity for Māori and Pacific patients, and the role of MBPC in decision support for clinicians.

Demographic Disparities in Use of Outpatient Palliative Care Services (RP520)

Demographic Disparities in Use of Outpatient Palliative Care Services (RP520)

Outpatient Palliative Care for Noncancer Illnesses: One Program's Experience with Implementation, Impact, and Lessons Learned.

Background: Despite substantial palliative care (PC) needs in people with serious illnesses other than cancer, outpatient PC is less available to these populations. Objectives: Describe the experience, impact, and lessons learned from implementing an outpatient PC service (OPCS) for people with noncancer illnesses. Design: Observational cohort study. Setting/Subjects: Patients seen by an OPCS at a United States academic medical center October 2, 2017-March 31, 2021. Measurements: Patient demographics and clinical characteristics, care processes, rates of advance care planning (ACP), and health care utilization. Results: During the study period, 736 patients were seen. Mean age was 66.7 years, 47.7% were women, and 61.4% were White. Nearly half (44.9%) had a neurologic diagnosis, 19.2% pulmonary, and 11.0% cardiovascular. Patients were most often referred for symptoms other than pain (62.2%), ACP (60.2%), and support for patient/family (48.2%). Three-quarters (74.1%) of visits occurred by video. A PC physician, nurse, social worker, and spiritual care provider addressed nonpain symptoms (for 79.2%), family caregiver needs (70.0%), psychosocial distress (69.9%), ACP (68.8%), care coordination (66.8%), pain (38.2%), and spiritual concerns (27.8%). Rates of advance directives increased from 24.6% to 31.8% (p < 0.001) and Physician Orders for Life-Sustaining Treatment forms from 15.6% to 27.3% (p < 0.001). Of 214 patients who died, 61.7% used hospice, with median hospice length-of-stay >30 days. Comparing the six months before initiating PC to the six months after, hospitalizations decreased by 31.3% (p = 0.001) and hospital days decreased by 29.8% (p = 0.02). Conclusions: Outpatient PC for people with noncancer illnesses is feasible, addresses needs in multiple domains, and is associated with increased rates of ACP and decreased health care utilization. Controlled studies are warranted.

Impact of Palliative Care in End-of-Life of Fibrotic Interstitial Lung Disease Patients.

Background: Interstitial lung disease (ILD) is associated with poor quality of life (QoL) and high symptom burden. Studies evaluating the benefits of palliative care examined mainly idiopathic pulmonary fibrosis (IPF) patients. We aim to examine the impact of palliative care on a broader group of fibrotic ILD patients. Methods: Single center retrospective cohort study comparing deceased ILD patients who received outpatient palliative care services (palliative-intervention group) against a usual care group. Results: Of 63 subjects, 26 (41%) were in the palliative-intervention group and 37 (59%) in the usual care group. Median time to palliative care referral was 8.6 (IQR .3-21.2) months. Dyspnea-related disability was greater in the palliative-intervention group [mMRC dyspnea score 3.5(IQR 2-4) vs 2(IQR 2-4), P = .039], with more patients requiring long term oxygen therapy (70% vs 30%, P < .001). There was no difference in the median number of hospitalizations or length of stay in the last 6months of life. Patients in the palliative-intervention group had a higher uptake of advance care planning (ACP) (39% vs 11%, P = .014), lower frequency of intensive care unit (ICU) admissions (5% vs 19%, P = .102) and were prescribed more opioids (96% vs 27%, P < .001) and benzodiazepines (39% vs 14%, P = .022). The palliative-intervention group experienced a longer median survival of 23.9 months (95% confidence interval [CI] 14.1-33.7) compared to the usual group (11.4months [95% CI 5.4-17.3] (log-rank test: P = .023). Male gender was a strong predictor of 1-year mortality. Conclusions: The palliative-intervention group received earlier pharmacologic intervention for symptom relief. Healthcare utilization was not increased despite greater dyspnea-related disability.

When the Gold Standard of Care Is Not Available

A diagnosis of cancer and subsequent therapies (surgery, radiation, chemotherapy) are known to result in negative physical symptoms (eg, pain, nausea, fatigue, shortness of breath, weight loss). In addition to physical symptoms, increased depression and anxiety are also common. These symptoms negatively impact both the patient diagnosed with cancer and their family caregivers. The combination of cancer therapies and unpleasant side-effects can be overwhelming for patients and families to navigate. Thankfully, supportive palliative care has been shown to improve the overall experience of those along this journey.1–3 In fact, specialty palliative care is considered the “gold standard” for all patients with advanced cancer.4 Unfortunately, this service is not readily available to all. The American Society of Clinical Oncology (ASCO) and the National Cancer Institute (NCI) recommend that cancer treatment be delivered concurrently with palliative care for patients with advanced cancer.4 This recommendation includes the use of a specialty interdisciplinary palliative care team early in the disease trajectory for both the patient and their family.4 Palliative care is defined as a holistic care approach provided by an interdisciplinary team to manage a patient’s physical, psychosocial, emotional, and spiritual needs.5,6 Over the past few years, progress has been made to include palliative care services alongside cancer care, in some areas, however, not all patients receive this benefit. Hui et al7 reported that 95% of NCI-designated oncology centers offered outpatient specialty palliative care services. While less than half (40%) of non-NCI-designated cancer centers offered these same services. NCI-designated cancer centers make up approximately 30% of US Hospitals.7 Even though specialty palliative care programs within cancer centers have increased, access remains a challenge at non-NCI, resource-deficit, or smaller cancer centers. Leaving most patients without access to these critical advanced services. With these restrictions and limited access to specialty services, how then are we to provide this critical service to our patients and families receiving care at most cancer care centers across the nation? One answer may be primary palliative care. Primary palliative care is a holistic approach to care by all care providers that incorporates palliative care principles within chronic disease management (eg, cancer) utilizing collaboration with specialty palliative care providers when needed.8,9 The focus is on addressing palliative care competences, such as symptom and pain management and goals of care conversations (eg, my choices my wishes). Support and training for primary palliative care is available to all primary care providers through national palliative care organizations (eg, Center to Advance Palliative Care, the Hospice and Palliative Nurses Association, and the American Academy of Hospice and Palliative Medicine). The Center to Advance Palliative Care (https://www.capc.org) offers training for all members of the health care team with a focus on tools for practice and training. The Hospice and Palliative Nurses Association (https://advancingexpertcare.org) provides education to all members of the nursing team that focuses on communication and care of patients with advanced disease. Lastly, the American Academy of Hospice and Palliative Medicine (http://aahpm.org) provides training with a primary focus on doctors and advanced care providers. In summary, the gold standard of care is to provide concurrent palliative care for patients with advanced cancer based upon the recommendations of ASCO and NCI. Additionally, the benefits of palliative care for cancer patients and families have been realized through evidence. However, specialty palliative care teams remain a scarce resource for many non-NCI oncology centers. To combat this issue, basic palliative care training and education should be provided to all oncology care providers so that primary palliative care can be integrated to fill this gap for patients and families. Financial Disclosure The authors have no funding or conflicts of interest to disclose.

Provider Perspectives on and Access to Palliative Care for Patients With Interstitial Lung Disease

Interstitial lung disease (ILD) results in profound symptom burden and carries high mortality. Palliative care (PC) is dedicated to improving quality of life in patients with serious illness. Early PC provision improves rates of advance care planning and symptom management in patients with ILD. What are the current perspectives on PC among ILD providers, and what are the barriers to PC in ILD specialty centers? A 24-question electronic survey was disseminated to providers at the 68 Pulmonary Fibrosis Foundation Care Centers across the United States from October 2020 to December2020. The survey was completed by 128 participants representing all 68 Pulmonary Fibrosis Foundation Care Center Network sites. Most respondents were physicians. Most providers exhibit good knowledge of, feel comfortable assessing a patient's readiness for, and agree with the need for PC for patients with ILD. Providers are most likely to refer to PC at objective disease and/or symptomatic progression rather than at initial diagnosis. In comparison with providers who report referring their patients to PC, providers who report rare referral are more likely to cite lack local PC availability (P< .01) and less likely to feel comfortable discussing prognosis/disease trajectory (P= .03) or feel it is important to address advance directives in ILD clinic (P= .02). There is a lack of standardized measures used to assess specific symptoms, overall symptom burden, or health-related quality of life across institutions. Discordance exists between self-reported and actual access to local inpatient and outpatient PC services. Most ILD providers use PC and are comfortable discussing PC. Barriers to PC identified in this survey include the following: perceived lack of local access to PC, lack of systematic tools to assess symptom burden, lack of established optimal timing of PC referral, and unclear need for specialized PC delivery.

Referral Patterns of Outpatient Palliative Care among the Head and Neck Cancer Population.

Introduction Patients with head and neck cancer (HNC) experience unique physical and psychosocial challenges that impact their health and quality of life. Early implementation of palliative care has been shown to improve various health care outcomes. Objective The aim of the present study was to evaluate the patterns of referral of patients with HNC to outpatient palliative care as they relate to utilization of resources and end-of-life discussions. Methods We performed a retrospective review of 245 patients with HNC referred to outpatient palliative care services at two Louisiana tertiary care centers from June 1, 2014, to October 1, 2019. The control group consisted of those that were referred but did not follow-up. Reasons for referral were obtained, and outcome measures such as emergency department (ED) visits, hospital readmissions, and advance care planning (ACP) documentation were assessed according to predictive variables. Results There were 177 patients in the treatment group and 68 in the control group. Patients were more likely to follow up to outpatient palliative care services if referred for pain management. Hospital system, prior inpatient palliative care, and number of outpatient visits were associated with an increased likelihood for ED visits and hospital readmissions. Those in the palliative care treatment group were also more likely to have ACP discussions. Conclusion Early implementation of outpatient palliative care among patients with HNC can initiate ACP discussions. However, there are discrepancies in referral reasons to palliative care and continued existing barriers to its effective utilization.