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The past 25 years have proved that palliative care is effective in improving care of seriously ill patients. Research attention must pivot to focus on policy changes and systems and models of care that ensure easy access to quality palliative care to all patients who need it. Education, alone, has not worked. Leaving it to individual organizations to decide has not worked. The question of whether incentives should be used has arisen. Should we design treatment algorithms, such as for cardiopulmonary resuscitation, where palliative care is part of standard care and requires an "opt out"? Should payers pay more to health care organizations who demonstrate they provide universal access to palliative care and how can we control for unintended consequences? Should provision of specialist palliative care be required for a health care organization to be accredited? How can we advance the state of the science and best support the workforce?

Background: African Americans in the United States have worse end-of-life care and cancer outcomes than whites. Palliative care may improve this disparity. Community Health Workers may provide a means to improve palliative care disparities., Methods: Semistructured in-depth interviews (five) and stakeholder focus groups (four) were conducted with cancer patients, caregivers, health care administrators, oncologists, and community health workers (CHWs). Patients were recruited through snowball sampling. Three raters coded interviews independently. Data were analyzed using interpretative phenomenological analysis., Results: Seventy-one individuals were contacted to participate with 24 stakeholders (34%) participating in individual interviews or across 4 stakeholder engagements. Eleven constructs were identified and grouped in three broader themes: "hub of the wheel," understanding palliative care, and patient-provider relationships. Participants felt that the role of a CHW should be central, bridging patients with their providers, information, and resources, including psychosocial support and advance care planning documents. They also placed an emphasis on the background of CHWs, saying individuals selected should be familiar with the history, culture, and norms of the communities from which they operate. Stakeholders reported that a CHW could activate a patient to contact their primary care physician or oncologist who may refer to or provide palliative care. Stakeholders reported that given the barriers to palliative care, a CHW could contribute to patient-centered multidisciplinary care while addressing palliative care domains with patients and families in a culturally sensitive manner., Conclusion: Based on feedback from patients, caregivers, and providers, a culturally adapted CHW intervention may improve palliative care use for African American patients with advanced malignancies.

Background: Although mounting evidence supports the use of palliative care (PC) to improve care experiences and quality of life for oncology patients, the frequency of and factors associated with PC use during oncology-related hospitalizations remain unknown., Materials and Methods: Using the National Inpatient Sample dataset, hospitalizations during 2012-2014 for a primary diagnosis of cancer with high risk of in-hospital mortality were identified. PC use was identified using the V66.7 ICD-9 code. Factors associated with the cost of hospitalization were identified using multivariable gamma regression., Results: During the study period, 124,186 hospitalizations were identified with a primary diagnosis of malignancy (melanoma, breast, colon, gynecologic, prostate, male genitourinary, head/neck, urinary tract, noncolon gastrointestinal, lung, brain, bone/soft tissue, endocrine, or nonlung thoracic). Most patients were treated at a teaching hospital (51-77% by cancer type), and use of PC ranged from 10% for patients with endocrine cancers to 31% for patients with melanoma. Patients utilizing PC had a lower frequency of operative procedures (4-33% vs. 34-79% by cancer type, all p ≤ 0.001), a higher rate of in-hospital death (30-45% vs. 4-10% by cancer type, all p < 0.001), and a lower total hospitalization cost (median: $5076-17,151 vs. $10,918-29,287 by cancer type, p ≤ 0.01 except male genitourinary). In an adjusted analysis, the cost of hospitalization was significantly associated (all p < 0.001) with patient gender, race, age, operative, in-hospital death, extended length of stay, and PC., Conclusions: In summary, inpatient PC utilization varied by cancer type. PC was associated with lower utilization of surgical procedures, shorter length of stay, and lower hospitalization cost. Lower hospitalization cost was also seen for patients who were older, female, or African American.

Introduction: Advanced cancer patients participating in phase 1 clinical trials experience considerable symptom burden. Palliative care (PC) may benefit these individuals by providing supportive care during clinical research participation. This study investigates integration of a PC intervention among phase 1 trial participants with advanced cancer., Methods and Materials: This study is a multisite randomized clinical trial testing a concurrent PC intervention among phase 1 trial participants. Baseline demographic and clinical characteristics and descriptive baseline assessment findings were examined for all participants to date. Self-report assessments included quality of life (QOL) using the Functional Assessment of Cancer Therapy-General, spirituality using the Functional Assessment of Chronic Illness Therapy-Spirituality, and overall distress using the Distress Thermometer. Clinical trial retention and healthcare utilization were assessed through chart audit at study completion., Results: The study has enrolled 178 participants to date. The average age is 60.3 years, the majority was Caucasian (57.9%), and participants had an average of 1.7 comorbidities. Overall QOL was 77.6 (±15.1). Responses were most favorable for social/family well-being (22.6 ± 4.6), lowest for emotional well-being (14.9 ± 5.1), and average overall distress was 3.6 (±2.7). Healthcare utilization at study completion (n = 134) identified low rates of supportive care referrals, with approximately half of participants referred to social work (50.8%), and fewer referred for pain (43%), resource centers (44%), and physical therapy (18%)., Conclusion: Phase 1 clinical trial participants experience unmet QOL needs at baseline and levels of distress that merit clinical intervention. Although this study is in progress, initial findings support the potential benefits of PC among this population.

Background: Cancer patients with advanced disease who have exhausted most treatment options are often offered participation in Phase I clinical trials. To date, studies that assess the benefits of palliative care provided concurrently in Phase I clinical trial settings are lacking. The overall purpose of this study was to test the feasibility of a palliative care intervention administered concurrently to cancer patients receiving treatment in a Phase I clinical trial., Methods: Cancer patients enrolling in a Phase I clinical trial were invited to participate in this study. Patients completed baseline questionnaires prior to treatment initiation that assessed quality of life (QOL), symptom distress, psychological distress, and satisfaction with care. Patients then received the palliative care intervention (PCI), which consisted of comprehensive QOL assessment, care planning for the patient during an interdisciplinary team meeting, and two patient education sessions. Patients were surveyed again at 1 and 2 months following treatment initiation., Results: A total of 14 patients were accrued to the pilot over a 3-month time period, representing 70% of eligible patients. Patient retention was high at 1 month (75%), and had declined at 2 months (50%). Patient outcome measure scores, including symptom distress, psychological distress, and satisfaction with care, were relatively stable over time, except for overall QOL, which declined over time., Conclusions: Concurrent palliative care is feasible for cancer patients treated in Phase I clinical trial settings. A large, multisite randomized controlled trial based on this pilot will be launched to test the efficacy of the intervention in this understudied cancer population.

Background and Objective: In September 2013 the Institute of Medicine (IOM) released a report on the quality of cancer care in the United States. We report here on the recommendations of the IOM report and the implications for the palliative care community., Methods: The IOM report is based on a consensus of literature and expert opinion. The recommendations provide direction for health policy, education, and clinical practice. The report emphasizes the significance of the aging population and implications for cancer care., Results: The recommendations from the report offer many opportunities for palliative care including enhancing the use of advance care planning and integration of palliative care across the cancer trajectory., Conclusions: Quality cancer care depends on the integration of quality palliative care. The palliative care community can use this IOM report to guide their collaboration with oncology and to enhance the quality of care provided to cancer patients and their families.

Background: Over the last 20 years, multiple interventions to better integrate palliative care and intensive care unit (ICU) care have been evaluated. This systematic review summarizes these studies and their outcomes., Methods: We searched MEDLINE, Embase, Cumulative Index to Nursing and Allied Health Literature (CINAHL), the Cochrane Library, and the Web of Science; performed a search of articles published by opinion leaders in the field; and reviewed hand-search articles as of August 13, 2012. The terms "palliative care" and "intensive care unit" were mapped to MeSH subject headings and "exploded." We included trials of adult patients that evaluated an ICU intervention and addressed Robert Wood Johnson group-identified domains of high-quality end-of-life care in the ICU. We excluded case series, editorials, and review articles. We compared two types of interventions, integrative and consultative, focusing on the outcomes of patient and family satisfaction, mortality, and ICU and hospital length of stay (LOS), because these were most prevalent among studies., Results: Our search strategy yielded 3328 references, of which we included 37 publications detailing 30 unique interventions. Interventions and outcome measures were heterogeneous, and many studies were underpowered and/or subject to multiple biases. Most of the interventions resulted in a decrease in hospital and ICU LOS. Few interventions significantly affected satisfaction. With one exception, the interventions decreased or had no effect on mortality. There was no evidence of harm from any intervention., Conclusions: Heterogeneity of interventions made comparison of ICU-based palliative care interventions difficult. However, existing evidence suggests proactive palliative care in the ICU, using either consultative or integrative palliative care interventions, decrease hospital and ICU LOS, do not affect satisfaction, and either decrease or do not affect mortality.

Prostacyclin analogues such as epoprostenol (Flolan®) are commonly used in the treatment of pulmonary arterial hypertension (PAH). However, their complex administration and significant cost may limit the access that patients with PAH have to palliative and hospice care. We herein report our experience using epoprostenol in a dedicated palliative care unit and present our inpatient protocol for the drug's administration.

Background: Palliative care (PC) programs attempt to improve communication and symptom management, and a consequence has been lower cost of in-hospital death. To date, most research has focused on urban large hospitals. This study reports the clinical and financial impact of a new palliative care service at a 76-bed nonprofit hospital located in rural Virginia, Rappahannock General Hospital (RGH)., Methods: The RGH PC program started in 2006 with a part-time physician on grant support. We collected the number of consults, physician billing and receipts, and calculated the impact on the hospital's charges for patients treated with concurrent palliative care., Results: The program was well accepted clinically with referrals from most of the palliative care physician's colleagues. After the first year of operation, she has about 10 new consults and a total of 45 visits per month. Billings for this year are projected to be $59,070 and her collections are projected to be $29,604 (50%). Hospital charges per patient are reduced about $400 per day, or 25%, after a palliative care consultation, which sums to $80,000 to $130,000 yearly. Referrals to home hospice increased., Conclusions: Palliative care by a dedicated practitioner can work in rural areas. The income will be small, but the operational and financial benefits to the hospital can be significant. This is better care at a cost that rural hospitals and practitioners can afford.

Palliative care provides open and honest communication, medically appropriate goal setting, and meticulous attention to symptom assessment and control. The Physicians Orders for Life Sustaining Treatment (POLST) is a growing movement to allow health care providers to indicate, with their patients, what they want done in specific situations, such as feeding tubes, mechanical ventilation, or transfer to an intensive care unit. We have developed an internal signout tool used by palliative medicine fellows in our institution to specify similar interventions-or not-with seriously ill palliative care patients, the Providers Signout for Scope of Treatment (PSOST). We have found that this situation-specific tool enables smooth transitions of care on nights and weekends, especially when the patient is near death, and may help prevent both overescalation of care and underuse of life saving treatments such as resuscitation. The PSOST differs from other signout tools in that it gives clear direction regarding the patient's medical goals and desire for escalation of care, or not. We present it here for open access and use anywhere. This tool has also assisted in building team communication with the nursing shifts, especially nights and weekends, as all team members are able to deliver a consistent message, while meeting the goals of care for patients and families. We believe this tool could be useful with a broader patient population, outside of Palliative Medicine, to provide clearer direction for hospitalized or nursing home patients whose care is often directed by multiple providers. It could also be used as a template for signouts on other inpatient services, as care goals are important for all patients.

It has frequently been claimed that palliative care (PC) consultation services reduce hospital length of stay (LOS). We review 12 published studies comparing patients receiving PC or similar intervention and patients receiving usual care with regard to average total hospital LOS. None of the six observational studies showed LOS impact. Three of the four quasi-experiments and one of the two randomized controlled trials reported LOS reduction for at least one subsample. Reduced LOS was demonstrated only for decedents in intensive care unit-based interventions using experimental or quasi-experimental research designs. PC program leaders are cautioned against promising that their inpatient consultations will reduce the length of those admissions because this may be nearly impossible for a typical hospital-based PC program to demonstrate using observational data. Research to date has been handicapped by designs and methods not suitable for detecting an impact on LOS. Only three studies included survivors and decedents and disaggregated them in analysis and interpretation, despite profound differences in the meaning and implications of reduced LOS for survivors and decedents. Recommendations for future studies include conceptualizing, analyzing, and reporting outcomes separately for survivors and decedents; strengthening study design to reduce the likelihood of failing to detect actual LOS impact; using methods that allow for creation of a reasonable comparison group; and addressing the fundamental problem that LOS is both a predictor and criterion variable in observational studies of palliative care consultation services.

Introduction: We studied the impact of an 11-bed inpatient palliative care unit (PCU) on site of death and observed mortality in the health system, oncology, and palliative care units. Observers were concerned that an active PCU would attract dying patients and worsen comparative mortality rates for Medicare and U.S. News & World Report comparisons., Methods: We reviewed 10 years of experience with all patients who died in the hospital before and after we opened our PCU in 2000., Results: The PCU concentrated dying patients on the PCU but total deaths did not change over 10 years and remained approximately 3% of admissions. Within 2 years, one quarter of all health system decedents died on the PCU. The proportion who died on the oncology floor and general units declined, but the number of intensive care unit deaths did not change., Conclusions: An inpatient PCU did not increase the hospital-wide death rate. The PCU did change the site of death to a more appropriate venue for one quarter of patients.

Background: Approximately 5%-10% of all cancers and cardiovascular diseases have a significant genetic component. Of the 15 most frequent admission diagnoses for palliative care, at least one third have a significant genetic component which is testable, informative, and potentially life saving to the survivors. Once the patient has died, the chance to test or bank DNA for common inherited conditions such as breast cancer, colon cancer, cardiovascular disease, etc., is gone., Objective: To determine the frequency of genetic conditions for commonly seen palliative care conditions, the availability of testing or DNA banking for future testing, and how genetics assessment is helpful., Design: A case illustration and review of the currently published evidence., Results: Genetic testing fits the accepted model of family-centered palliative care, is ethical, and may lead to life-saving interventions. Risk assessment tools and helpful websites are available., Conclusions: While common genetic conditions should be recognized before end-of-life care, the palliative care health professional may be the only person to recognize the condition before death of the patient and loss of available DNA.

Palliative care consultation has been demonstrated to be useful in many situations in which expert symptom management, communication around sensitive issues, and family support may serve to enhance or improve care. The process of organ donation is an example of this concept, specifically the process of donation after cardiac death (DCD). DCD allows patients with severe, irreversible brain injuries that do not meet standard criteria for brain death to donate organs when death is declared by cardiopulmonary criteria. The DCD method of donation has been deemed an ethically appropriate means of organ donation and is supported by the organ procurement and medical communities, as well as the public. The palliative care (PC) team can make a significant contribution to the care of the patient and family in the organ donation process. In this paper we describe the controlled DCD process at one institution that utilizes the PC team to provide expert end-of-life care, including comprehensive medical management and family support. PC skills and principles applicable to the DCD process include communication, coordination of care, and skillful ventilator withdrawal. If death occurs within 90 minutes of withdrawal of life support, organs may be successfully recovered for transplantation. If the patient survives longer than 90 minutes, his or her care continues to be provided by the PC team. Palliative care can contribute to standardizing quality end-of-life care practices in the DCD process and provide education for involved personnel. Further experience, research and national discussions will be helpful in refining these practices, to make this difficult and challenging experience as gentle and supportive as possible for the courageous families who participate in this process.

Background: A randomized clinical trial of implantable drug delivery system (IDDS) plus comprehensive medical management (CMM) versus CMM alone in 200 patients with refractory cancer pain showed better clinical success with IDDS. The objective of this study was to evaluate whether IDDS could help the most refractory patients failed by expert CMM., Patients and Methods: This was a planned longitudinal prospective analysis of 30 of 99 (30%) patients for whom CMM failed who crossed over to IDDS by 6 months, as part of the randomized clinical trial. Patients had a pain visual analogue scale (VAS) score of 5 or more despite CMM with 320 mg or morphine-equivalent opioids and adjunct drugs for 1 month. The intervention was an implantable intrathecal programmable pump with opioids and local anesthetics. Clinical success was measured as a 20% change in pain VAS score and NCI CTEP drug toxicity scales., Results: Clinical success was achieved with pain scores and drug toxicity scores significantly reduced by 27% (p = 0.011) and 51% (p < 0.0001). Median survival was 103 days after IDDS implant, similar to IDDS patients who received implantation as part of the initial randomization., Conclusions: CMM patients who crossed over to IDDS for the most refractory pain had significant reductions in pain and drug toxicity. The survival time of 3 months may be long enough for the IDDS implant to be cost effective. In this prospective longitudinal study, patients with refractory cancer pain despite comprehensive medical management derived benefit from IDDS.

Background: Current end-of-life hospital care can be of poor quality and high cost. High volume and/or specialist care, and standardized care with clinical practice guidelines, has improved outcomes and costs in other areas of cancer care., Methods: The objective of this study was to measure the impact of the palliative care unit (PCU) on the cost of care. The PCU is a dedicated 11-bed inpatient (PCU) staffed by a high-volume specialist team using standardized care. We compared daily charges and costs of the days prior to PCU transfer to the stay in the PCU, for patients who died in the first 6 months after the PCU opened May 2000. We performed a case-control study by matching 38 PCU patients by diagnosis and age to contemporary patients who died outside the PCU cared for by other medical or surgical teams, to adjust for potential differences in the patients or goals of care., Results: The unit admitted 237 patients from May to December 2000. Fifty-two percent had cancer followed by vascular events, immunodeficiency, or organ failure. For the 123 patients with both non-PCU and PCU days, daily charges and costs were reduced by 66% overall and 74% in "other" (medications, diagnostics, etc.) after transfer to the PCU (p < 0.0001 for all). Comparing the 38 contemporary control patients who died outside the PCU to similar patients who died in the PCU, daily charges were 59% lower (US dollars 5304 +/- 5850 to US dollars 2172 +/- 2250, p = 0.005), direct costs 56% lower (US dollars 1441 +/- 1438 to US dollars 632 +/- 690, p = 0.004), and total costs 57% lower (US dollars 2538 +/- 2918 to US dollars 1095 +/- 1153, p = 0.009)., Conclusions: Appropriate standardized care of medically complex terminally ill patients in a high-volume, specialized unit may significantly lower cost. These results should be confirmed in a randomized study but such studies are difficult to perform.

Background: Pancreatic cancer patients often present with complications, which can impact treatment tolerance. Thus, symptom management is a vital component of treatment in addition to traditional chemotherapeutics. Concurrent palliative care with an emphasis on aggressive symptom management may sustain both clinical and patient-centered outcomes during treatment. The purpose of this article is to explore the impact of a concurrent palliative care intervention in patients with pancreatic cancer treated on phase I clinical trials. Materials and Methods: This is a secondary analysis of a National Cancer Institute (NCI)-funded randomized trial of an advanced practice nurse driven palliative care intervention for solid tumor patients treated on phase I clinical trials. Only pancreatic cancer patients were included in the analysis. Patients received two educational sessions around the quality of life (QOL) domains and completed the Functional Assessment of Cancer Therapy—General (FACT-G), patient-reported outcomes version of the common terminology criteria for adverse events (PRO-CTCAE), and the psychological distress thermometer at baseline, 4 and 12 weeks. Mixed model with repeated measures analysis was used to explore outcomes by study arm. Results: Of the 479 patients accrued to the study, 42 were diagnosed with pancreatic cancer (26 intervention, 16 usual care). A trend toward improvement in the physical, social, emotional, and functional FACT-G QOL subscales and psychological distress (baseline to 12 weeks) were observed for the intervention arm. Patients reported moderate severity in psychological and physical stress. Conclusions: In this secondary analysis, a nurse-led palliative care intervention may improve the QOL and psychological distress of pancreatic cancer patients. A phase III trial focused on patients with pancreatic cancer is needed to determine the effectiveness of the intervention. [ABSTRACT FROM AUTHOR]

Background: Phase 1 clinical trials remain vital for oncology care. Patients on these trials require supportive care for quality-of-life (QOL) concerns. Objective: To test a Palliative Care Intervention (PCI) for patients with solid tumors enrolled in Phase I therapeutic trials with a priori hypothesis that psychological distress, QOL, satisfaction, symptoms, and resource utilization would be improved in the PCI group. Design: This unblinded randomized trial compared the PCI with usual care in patients accrued to Phase I Clinical Trials. Subjects (n = 479) were followed for 24 weeks, with 12 weeks as the primary outcome. Setting: Two Comprehensive Cancer Centers in the United States. Subjects: A consecutive sample, 21 years or older, English fluency, with solid tumors initiating a Phase 1 trial. Measurements: Psychological Distress (Distress Thermometer), QOL total and subscales (FACT-G), satisfaction (FAM-CARE), survival, and resource utilization (chart audit). Results: PCI subjects showed improved Psychological Distress (−0.47, p = 0.015) and Emotional Well-Being (0.81, p = 0.045), with differences on variables of QOL and distress between sites. High rates of symptom-management admissions (41.3%) and low rates of Advance Directive completion (39.0%), and hospice enrollment (30.7%), despite a median survival in both groups of 10.1 months from initiating a Phase 1 study. Conclusions: A nurse-delivered PCI can improve some QOL outcomes and distress for patients participating in Phase 1 trials. Greater integration of PC is needed to provide quality care to these patients and to support transitions from treatment to supportive care, especially at the end of life. ClinicalTrials.gov Identifier: NCT01612598. [ABSTRACT FROM AUTHOR]

Objective: Develop and pilot-test a nurse-led primary palliative care intervention for patients with advanced hematologic malignancies. Background: Nurse-led primary palliative care interventions may improve outpatient palliative care provision for patients with advanced hematologic malignancies. Methods: This two-phase, single-arm pilot study involved patients with recurrent or resistant hematologic malignancies, their caregivers, and oncology clinicians at two US-based urban, university-affiliated oncology clinics. Measurements included feasibility (enrollment rates, intervention fidelity, and outcome assessment rates) and acceptability (patient, caregiver, and clinician surveys). Results: In Phase 1 we developed and implemented an oncology nurse-led primary palliative care intervention for patients with recurrent or resistant hematologic malignancies and their caregivers. In Phase 2, we tested feasibility and acceptability. Twenty-six patient participants enrolled. Consent-to-approach rate was 78% and enrolled-to-consent rate was 84%. All enrolled participants received the intervention per protocol. Sixty-nine percent of patients and 100% of caregivers reported that the intervention helped them better understand the patient's illness and cope. Seventy-five percent of oncologists reported that the intervention improved their patients' quality of care, and 25% reported that it helped them take better care of patients. Conclusions: Although our pilot of oncology nurse-led primary palliative care for patients with advanced hematologic malignancies met some of its secondary feasibility endpoints, it did not meet its primary feasibility endpoint (enrollment) and acceptability was mixed. Protecting nursing staff time, increasing patient and clinician involvement in intervention development, and identifying patients with highest supportive needs may improve feasibility and acceptability of future primary palliative care in hematologic malignancy trials. [ABSTRACT FROM AUTHOR]

Background: Preoperative advance care planning (ACP) may benefit patients undergoing major surgery. Objective: To evaluate feasibility, safety, and early effectiveness of video-based ACP in a surgical population. Design: Randomized controlled trial with two study arms. Setting: Single, academic, inner-city tertiary care hospital. Subjects: Patients undergoing major cancer surgery were recruited from nine surgical clinics. Of 106 consecutive potential participants, 103 were eligible and 92 enrolled. Interventions: In the intervention arm, patients viewed an ACP video developed by patients, surgeons, palliative care clinicians, and other stakeholders. In the control arm, patients viewed an informational video about the hospital's surgical program. Measurements: Primary Outcomes—ACP content and patient-centeredness in patient–surgeon preoperative conversation. Secondary outcomes—patient Hospital Anxiety and Depression Scale (HADS) score; patient goals of care; patient and surgeon satisfaction; video helpfulness; and medical decision maker designation. Results: Ninety-two patients (target enrollment: 90) were enrolled. The ACP video was successfully integrated with no harm noted. Patient-centeredness was unchanged (incidence rate ratio [IRR] = 1.06, confidence interval [0.87–1.3], p = 0.545), although there were more ACP discussions in the intervention arm (23% intervention vs. 10% control, p = 0.18). While slightly underpowered, study results did not signal that further enrollment would have yielded statistical significance. There were no differences in secondary outcomes other than the intervention video was more helpful (p = 0.007). Conclusions: The ACP video was successfully integrated into surgical care without harm and was thought to be helpful, although video content did not significantly change the ACP content or patient–surgeon communication. Future studies could increase the ACP dose through modifying video content and/or who presents ACP. Trial Registration: clinicaltrials.gov Identifier NCT02489799. [ABSTRACT FROM AUTHOR]