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Complex regional pain syndrome is a chronic debilitating pain disorder that is difficult to manage, in part due to its heterogeneous clinical presentation and lack of clearly defined pathophysiology. Patients usually require a multidisciplinary approach to treatment, which can entail pharmacotherapy, physical therapy, behavioral therapy, and interventional pain procedures, such as sympathetic nerve blocks, spinal cord stimulation, and dorsal root ganglion stimulation. However, many patients continue to experience pain refractory to these multimodal strategies. Scrambler therapy (ST) is a noninvasive method of neuromodulation that is applied through cutaneous electrodes, and can alleviate chronic neuropathic pain by stimulating C-fibers and replacing endogenous pain signals with synthetic non-nociceptive signals. Although the use of ST has been reported for several types of refractory central and peripheral neuropathic pain, there is a paucity of data regarding the use of ST for complex regional pain syndrome. We present two patients with complex regional pain syndrome of the right lower extremity, who each underwent ST and experienced significant pain relief and improvement in function and quality of life. [ABSTRACT FROM AUTHOR]

The article focuses on pain is a common multidimensional symptom that compromises quality of life for many patients with serious illness is understanding the concept of total pain who care for patients facing a life-limiting illness. Topics include the nociception refers to neural encoding of impending tissue damage, the pain refers to the subjective experience of actual or impending harm and the serious illness can fundamentally disrupt previously established expectations for the future.

The article presents a case study related to 80-year-old woman with several years of severe diabetic neuropathy manifest as symmetric stocking-glove electric shocks that caused pain with walking or gripping. Topics include the scrambler therapy is a noninvasive neuromodulation that sends nonpain information along the existing nerve pathways to modify central sensitization, and the success in several randomized controlled trials treating as low-back pain, and postherpetic neuropathy.

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. [ABSTRACT FROM AUTHOR]

Objective: Donation after cardiac death (DCD) or donation of organs after removal of life support is an accepted means of organ retrieval that usually occurs in the setting of sudden illness but has not been described in people with progressive neurologic illness. We report DCD in two people with progressive amyotrophic lateral sclerosis (ALS). Methods: Case series at an academic medical center of two men with progressive ALS who underwent withdrawal of artificial life support, rapid cardiac death, and subsequent organ donation. The primary outcome was donation of organs in concordance with patient and family wishes. Results: Both patients underwent peaceful withdrawal of life support in the presence of family, and multiple organs were donated. Conclusions: Patients may legally and ethically refuse life-sustaining care. These patients considered their lives to be more burdensome than beneficial near the end of their lives, both carefully planned the time and circumstance of their deaths, and both fulfilled a long-standing desire to donate their organs. This study describes a potential opportunity for patients with progressive neurologic illness. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Describes the approach of the American Society of Clinical Oncology (ASC0) in improving the care for cancer patients. Facts on end-of-life issues in the United States; Mission of ASCO; Information on the educational programs of ASCO; Features of the ASCO End of Life Program; Impact of managed care on end of life decisions.

Background: The benefits of hospice for patients with advanced cancer are well established. Short hospice length of service (LOS) is a marker of poor quality care and patient and family dissatisfaction. Interventions based on behavioral science might reduce suboptimal hospice use. Objective: To assess effects of peer comparisons on rates of short hospice LOS for cancer patients at a tertiary comprehensive cancer center. Design: Pre–post design utilizing a peer-comparison feedback intervention comparing individual oncologist hospice data. Setting: Urban, academic, comprehensive cancer center in Maryland. Measurements: Hospice enrollment rate. Median hospice LOS and percentage short hospice LOS (defined as ≤7 days). Results: Sixty oncologists received the intervention. Before the intervention, 394 patients enrolled in hospice for a period of 21 months (18.76 enrollments per month). Median hospice LOS was 14.5 days. After the intervention, 418 patients enrolled in hospice for 14 months (29.85 enrollments per month). Median hospice LOS was nine days. The percentage of patients experiencing a short hospice LOS increased from 33.3% to 43.5%. Conclusions: The methods are not sufficient to conclude that the intervention does not improve hospice use. A substantial number of patients with cancer who used hospice had LOS ≤7 days, a marker of poor quality. Using peer comparison in combination with additional behavioral interventions should be considered to improve end-of-life care. [ABSTRACT FROM AUTHOR]

Background: Scrambler therapy (ST) is a relatively new neuromodulation technique that is useful in treatment of medication-resistant pain syndromes, including chemotherapy-induced peripheral neuropathy and other chronic pain syndromes. Amyloidosis commonly leads to peripheral neuropathy, and although the mechanism is unclear, it is possibly related to amyloid deposits on the nerve. Case Presentation: In this case presentation, we describe the novel use of ST for a patient with 13 years of neuropathic pain related to amyloidosis and worsened by chemotherapy. The patient reported bilateral hand pain with burning and aching and bilateral numbness on the soles of her feet. Her upper extremities were treated with 4 days of 40 minute ST treatment sessions providing reduction in her pain scores to zero. Discussion: Current therapy for amyloid peripheral neuropathy aims at treating the underlying condition, and then medical management with gabapentinoids. This is first case presentation showing successful treatment with ST. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

A letter to the editor is presented on the failure to accrue to a study of nebulized fentanyl for dyspnea.

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? [ABSTRACT FROM AUTHOR]

Background: Telenovelas show significant promise as a mode of education that could potentially enhance hospice family caregivers' (HFCG) ability to manage distress or pain for themselves and the care recipient. Objectives: We sought to understand HFCGs' perceived benefits and challenges of NOVELA using the Levels of Kirkpatrick as a conceptual framework. Setting/Subjects: HFCGs from two hospices in the Mid-Atlantic region of the United States. Measurements: Semistructured interviews were conducted to understand perceptions of HFCGs on the benefits and challenges of the NOVELA intervention. Results: Participants (N = 20) in our study were mainly homebound, well educated, White female, and adult children of people with advanced cancer who reported mild anxiety and moderate self-efficacy at baseline. Three unique themes were identified: acceptability of NOVELA, usability and relevance of NOVELA, and the effect of NOVELA. According to our conceptual model, the intervention positively affects all three adult learning categories: reaction, learning, and behavior. Conclusion: Our findings suggest that HFCGs support the proposed NOVELA intervention and it appears to be an acceptable educational tool during hospice care (NCT04533594). [ABSTRACT FROM AUTHOR]

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]

Presents a response by Thomas J. Smith and J. Brian Cassel to a letter to the editor about their study on end-of-life care costs.

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: Approximately 510 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. [ABSTRACT FROM AUTHOR]

The article discusses the findings of a review identifying patients with metastatic solid tumors and hematologic malignancies, who were admitted to an intensive care unit (ICU) and expired inpatient between January 1, 2017 and December 31, 2018. Topics covered include the criteria for patient inclusion in the review, results which show that only a minority of patients discussed goals of care or code status with their outpatient oncologists and that few engage in advance care planning.

Background: Despite positive outcomes associated with specialist palliative care (PC) in diverse medical populations, little research has investigated specialist PC in surgical ones. Although cancer surgery is predominantly safe, operations can be extensive and unpredictable perioperative morbidity and mortality persist, particularly for patients with upper gastrointestinal (GI) cancers. Objectives and Hypotheses: Our objective is to complete a multicenter, randomized controlled trial comparing surgeon-PC co-management with surgeon-alone management among patients pursuing curative-intent surgery for upper GI cancers. We hypothesize that perioperative PC will improve patient postsurgical quality of life. This study and design are based on >8 years of engagement and research with patients, family members, and clinicians surrounding major cancer surgery and advance care planning/PC for surgical patients. Methods: Randomized controlled superiority trial with two study arms (surgeon-PC team co-management and surgeon-alone management) and five data collection points over six months. The principal investigator and analysts are blinded to randomization. Setting: Four, geographically diverse, academic tertiary care hospitals. Data collection began December 20, 2018 and continues to December 2020. Participants: Patients recruited from surgical oncology clinics who are undergoing curative-intent surgery for an upper GI cancer. Interventions: In the intervention arm, patients receive care from both their surgical team and a specialist PC team; the PC is provided before surgery, immediately after surgery, and at least monthly until three months postsurgery. Patients randomized to the usual care arm receive care from only the surgical team. Main Outcomes and Measures: Primary outcome: patient quality of life. Secondary outcomes: patient: symptom experience, spiritual distress, prognostic awareness, health care utilization, and mortality. Caregiver: quality of life, caregiver burden, spiritual distress, and prognostic awareness. Intent-to-treat analysis will be used. Ethics and Dissemination: This study has been approved by the institutional review boards of all study sites and is registered on clinicaltrials.gov (NCT03611309, First received: August 2, 2018). [ABSTRACT FROM AUTHOR]

The article present a case study of 73-year-old woman with unresectable intrahepatic biopsy-proven cholangiocarcinoma manifest as 3 months of weight loss, heartburn, nausea, fatigue, and right upper quadrant and shoulder pain.

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]

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. [ABSTRACT FROM AUTHOR]

Background: Patient-centered outcomes research (PCOR) methods and social learning theory (SLT) require intensive interaction between researchers and stakeholders. Advance care planning (ACP) is valuable before major surgery, but a systematic review found no extant perioperative ACP tools. Consequently, PCOR methods and SLT can inform the development of an ACP educational video for patients and families preparing for major surgery. Objective: The objective is to develop and test acceptability of an ACP video storyline. Design: The design is a stakeholder-guided development of the ACP video storyline. Design-thinking methods explored and prioritized stakeholder perspectives. Patients and family members evaluated storyboards containing the proposed storyline. Setting/Subjects: The study was conducted at hospital outpatient surgical clinics, in-person stakeholder summit, and the 2014 Maryland State Fair. Measurements: Measurements are done through stakeholder engagement and deidentified survey. Results: Stakeholders evaluated and prioritized evidence from an environmental scan. A surgeon, family member, and palliative care physician team iteratively developed a script featuring 12 core themes and worked with a medical graphic designer to translate the script into storyboards. For 10 days, 359 attendees of the 2014 Maryland State Fair evaluated the storyboards and 87% noted that they would be 'very comfortable' or 'comfortable' seeing the storyboard before major surgery, 89% considered the storyboards 'very helpful' or 'helpful,' and 89% would 'definitely recommend' or 'recommend' this story to others preparing for major surgery. Conclusions: Through an iterative process utilizing diverse PCOR engagement methods and informed by SLT, storyboards were developed for an ACP video. Field testing revealed the storyline to be highly meaningful for surgery patients and family members. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Background: Acute myeloid leukemia (AML) is one of the most common types of leukemia in adults, but there is limited information on survivors' quality of life (QOL) after remission. Objective: We piloted a survey exploring patient-reported outcomes for people with AML in first complete remission (CR1) to determine whether patients felt the survey is relevant to their well-being and to summarize patient characteristics. Design/Measurements: Cross-sectional survey of a convenience sample of AML patients in CR1 assessing QOL and functioning (European Organization for Research and Treatment of Cancer [EORTC] QLQ-C30 v 3.0), well-being (QOL-cancer survivor [QOL-CS]), fatigue (Functional Assessment of Chronic Illness Therapy-Fatigue [FACIT-Fatigue]), and anxiety and depression (hospital anxiety and depression scale [HADS]). The survey contained five open-ended questions. Results: Eighteen patients completed the survey. Most felt it was completely or mostly relevant (88.8%) in describing their QOL. Participants scored well on the EORTC QLQ-C30, fatigue being the most common symptom (83%).The FACIT-Fatigue mean score was 28.7 and median score was 33.5 (normal ≥30). Two scored in the abnormal range for anxiety and one for depression on the HADS. On the QOL-CS, participants scored more than 6 out of 10 in most domains, except the subscales of distress and fear. Conclusions: The survey content and length were appropriate. Patients reported ongoing fatigue, fears of future test results, getting a second cancer, and recurrence of cancer. Survivors experience ongoing symptoms, highlighting the importance of providers performing ongoing symptom and needs assessments. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

The article focuses on genetic screening which identifies known markers of disease of the surviving family members of a dying patient. It mentions the recommendations of genetic banking or testing for genetic disorders including primary cancers, major birth defects, and sexual development disorders. It says that genetic nurses and medical geneticists can facilitate in genetic evaluations such as assistance in test selection and provide informed consent.

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. [ABSTRACT FROM AUTHOR]

Background: Hospice brings substantial clinical benefits to dying patients and families but is underutilized by patients dying of hematologic malignancies (HM); nationwide, only 2% of HM patients use hospice. There are 70,000 deaths among U.S. patients with hematologic malignancies yearly. Objective: We measured the use and length of stay (LOS) in hospice among patients with HMs at a large academic cancer center. Design: This was a single center retrospective review of adult patients (≥18 years) with lymphoma, leukemia, myelodysplastic syndrome, aplastic anemia, and multiple myeloma referred for hospice. Measurements: Information included demographics, transplant, hospice type, LOS, and use of 'expanded access' services. Results: Fifty-nine patients were referred to hospice, and 53 utilized hospice services, 25% of 209 HM decedents. Thirty-five received home hospice and 18 used inpatient hospice. The median home hospice LOS was nine days (SD 13) and inpatient hospice six days (SD 10). Nine patients with 'expanded access' hospice received only a few blood transfusions, and none received radiation. Conclusions: HM patients are referred late or never for hospice services. Studies evaluating earlier integration of palliative and hospice care with usual HM care are warranted. We present a one-page negotiation form that we have found useful in negotiations among HM physicians, hospice medical directors, and payers. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Information regarding the several topics discussed at a roundtable on the management of palliative care programs in the U.S. is presented. Topics include the advancement of palliative care programs since it exist along with the demand and availability of qualified clinicians into the program, and the identification of solutions for the dilemmas happening within health care facilities. The roundtable features several discussants including Lyn Ceronsky, Christine S. Ritchie, and Thomas J. Smith.

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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 endof- 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. [ABSTRACT FROM AUTHOR]

Dexmedetomidine (Precedex®) is an alpha-2 adrenergic agonist that can produce sedation and analgesia without causing respiratory depression. Its use has been described in patients undergoing mechanical ventilation, sedation for surgical and nonsurgical procedures, and prevention of withdrawal. We describe its use as an adjuvant analgesic in a patient with cancer pain refractory to multiple treatment modalities. [ABSTRACT FROM AUTHOR]