Search

Background: End-stage liver disease (ESLD) patients carry heavy symptom burdens and risk receiving aggressive and sometimes unwanted care at end of life. Palliative care (PC), which aims to alleviate symptoms and facilitate goal-concordant care in serious illness, may offer substantial benefits for ESLD patients but is not widely provided. Objectives: To assess the impact of PC integrated within hepatology (PCIH) services on health care utilization, advance care planning (ACP), and hospice enrollment. Design: We compared patients who received PCIH (n = 55) to a retrospective cohort (n = 57) receiving usual care in an outpatient hepatology clinic. Setting/Subjects: From June 2016 to November 2017, we enrolled patients receiving care in a U.S. public hospital clinic who met the following inclusion criteria: (1) ESLD with a Model for End-Stage Liver Disease score ≥20, (2) hepatology approval for PC referral, and (3) at least one advanced complication of ESLD. Measurements: We assessed patient demographics, clinical information, health care insurance status, health care utilization, completion of psychosocial assessments, and ACP using two-sided Fisher's exact test and Mann–Whitney U tests. Results: Patients receiving PCIH more frequently had goals of care discussions (87.3% vs. 21.2% p ≤ 0.01), completed ACP documentation (56.4% vs. 7.0%, p ≤ 0.01), psychosocial assessments (98.2% vs. 35.1%, p ≤ 0.01), and hospice enrollment (25.5% vs. 7.0%, p = 0.01). Patients receiving PCIH who were hospitalized also had fewer mean hospitalization days (13 vs. 19.7 days, p ≤ 0.01). Conclusions: Embedding PC services in a hepatology clinic is a promising strategy to improve care for ESLD patients in public hospitals. [ABSTRACT FROM AUTHOR]

Background: In 2007 we published a trial of home-based palliative care (HBPC) conducted in a managed care organization (MCO) that found significant improvements in patient satisfaction with health care, rates of home deaths, and reductions in health care use and costs. A decade later, we undertook a similar trial of HBPC within accountable care organizations (ACOs) funded by the Patient-Centered Outcomes Research Institute. This trial tested the same model using similar eligibility criteria and recruitment strategies as the earlier trial, yet it failed to achieve its enrollment targets. Objectives: To understand key differences in the trials that contributed to the success of one and failure of the other. Methods: We conducted a comparative case study of the original MCO HBPC trial and the subsequent ACO HBPC trial. Two researchers familiar with both trials reviewed both quantitative and qualitative data obtained from previous analyses and publications to develop a rich, in-depth understanding of each study. Results: We identified four differences that explain in large part why the ACO trial failed while the MCO trial succeeded. These differences center on the trials' setting, target populations, outreach strategies, and providers' understanding of palliative care. Discussion: Our findings demonstrate the challenges in conducting research in complex health care systems and how physician and setting structures along with target population and lack of general palliative care knowledge can influence the success of research. Conclusion: Future HBPC trials must consider the strengths and weaknesses of trial design factors when partnering with multiple health care organizations. ClinicalTrials.gov Identifier: NCT03128060. [ABSTRACT FROM AUTHOR]

Background: Lack of knowledge of palliative care has been identified as a primary barrier to access to care, with a recent survey reporting that Hispanics have the lowest rate of palliative care knowledge compared with other racial/ethnic groups. The purpose of this pilot study was to determine if there were trends toward improved palliative care knowledge after viewing four-minute video of a palliative care patient. Methods: We conducted a pre- and posttest pilot study among 50 Spanish-speaking, hospitalized Hispanic patients 40 years old and older in a large public hospital. We used the Palliative Care Knowledge Scale (PaCKS) to assess palliative care knowledge. Two questions measured intention to enroll in palliative care. Paired sample t-tests were conducted to investigate change in PaCKS scores. McNemar's test was used to compare differences in intentions to enroll in palliative care from pretest to posttest. We conducted linear regression analysis to determine factors associated with improved knowledge at posttest. Results: PaCKS scores revealed significant improvement in palliative care knowledge following viewing of the video, with scores increasing from an average of 6.4–11.4 at posttest. Intentions to enroll a family member in palliative care increased from 64% at pretest to 64%–98% at posttest. Intentions to enroll oneself increased from 72% to 92%. Conclusions: Brief exposure to a relatable role model may be effective in improving knowledge and intentions to enroll in palliative care services. More research is needed to determine if these videos are effective in increasing enrollment in palliative care. [ABSTRACT FROM AUTHOR]

Background: Although payment for home-based palliative care (HBPC) is slowly spreading, there remains significant challenges in engaging patients and physicians in palliative care programs and research. This challenge was illustrated in our previous HBPC trial that failed to identify and enroll eligible patients in both the study and in HBPC services. Objectives: The objective of this study was to determine challenges to participation in HBPC and in research among patients, caregivers, primary care physicians, HBPC providers, and accountable care organizations (ACOs). Design: We conducted a qualitative study employing individual interviews and focus groups. Setting/Subjects: We recruited patients (n = 17), caregivers (n = 8), primary care providers (n = 31), home-based care providers (n = 25), and ACO administrators and leaders (n = 12) from California, United States. Measurements: We used semistructured interview protocols to elicit perceived barriers to HBPC services and research. Results: We identified four overarching themes related to barriers to HBPC and palliative care research. These themes included: (1) limitations of patient recruitment strategies; (2) timing of stakeholder engagement; (3) lack of palliative care health literacy; and (4) novelty of the HBPC market. Conclusion: These findings point to factors that contributed to the failure, and subsequent closure, of the original randomized controlled trial. Our findings may inform the further development of HBPC and, more generally, palliative care practice and policy. ClinicalTrials.gov Identifier: NCT03128060. [ABSTRACT FROM AUTHOR]

Background: Until recently, consumers have had limited resources to assess quality of hospices agencies, contributing to growing numbers of consumers turning to online review sites, such as Yelp. However, little is known about the content of hospice Yelp reviews and how these relate to recently available Center for Medicare and Medicaid Services' Hospice Compare (HC) site data. Objective: To better understand what consumers report on Yelp about hospice care and explore how these areas relate to HC data. Design: We examined 692 consumer Yelp reviews of 67 hospices in California and compared identified themes with quality measures presented on the HC site. Setting/Subjects: We used a purposive sample of California Hospice's with Yelp reviews. Measurements: Qualitative consumer comments about their experience with hospice care were analyzed by using a grounded theory approach. Results: We found that overall Yelp comments were positive, however Yelp themes were more extensive and diverse than those on HC. Conclusion: We recommend that consumers consider both HC and online review sites such as Yelp when evaluating a hospice. [ABSTRACT FROM AUTHOR]

Background: Studies show significant associations between the various dimensions of religiousness and end-of-life (EOL) decisions, such as individuals with high religiosity are more likely to choose aggressive care at EOL. However, these studies focused largely on smaller cancer populations. To our knowledge, there is no existing literature about the association between religiosity and EOL decisions within a national sample of older adults. Objective: The objective of this study was to investigate the association between religiosity and advance directive (AD) completion, and among those with an AD, documented EOL care preferences, using a nationally representative sample. Methods: This was an observational study. Descriptive statistics and logistic regression were conducted with 6051 decedents from the Health and Retirement Study using self-reported frequency of religious service attendance, importance of religion, and religious affiliation. Measurements: The dependent variables were AD completion and care preference. The independent variables were self-reported frequency of religious service attendance, importance of religion, and religious affiliation. Results: Protestants and Catholics had significantly lower odds of AD completion, compared with those with no religious preferences. Decedents who reported religion as very important had significantly lower odds of AD completion than decedents who said religion is not too important. Furthermore, decedents who attended religious services at least once a week, compared with those who do not attend, had significantly higher odds of completing an AD. Among those who completed an AD, neither religiosity nor religious affiliation was significantly associated with preference for prolonged care. Conclusions: Our study demonstrates the influence religiosity has on the development of ADs, prompting seriously ill patients' religious needs to be recognized and supported. It further suggests that religious services may provide a good opportunity for promoting knowledge and completion of ADs. [ABSTRACT FROM AUTHOR]

Background: The lack of consumer knowledge and misconception of services could impede requests for and acceptance of palliative care. YouTube has been widely used for health information dissemination. Objective: To explore the availability and characteristics of palliative care educational videos on YouTube and determine how palliative care is portrayed in these videos. Methods: Keyword search and snowball methods were used to identify palliative care videos on YouTube. A structured data collection protocol was developed to record characteristics of a video. Descriptive analysis was used to describe the video features; logistic regression was conducted to determine the association between video characteristics and number of views per day. Results: A total of 833 videos were screened; 84 met criteria for analysis. The most prominent video styles were providing palliative care information (85%) and personal testimony (50%). One-third were uploaded by hospice/palliative care services or medical organizations, while another one-third by advocacy organizations. More than two-thirds mentioned "end-of-life" and 35% mentioned "hospice." Physicians most frequently appeared and served as protagonists. Protagonists were primarily female (71.0%), aged 18–64 years (81.7%), and white (90.3%). Compared with videos uploaded by health care agencies, those uploaded by advocacy organizations had 6.41 times higher odds of having more than one view per day (p = 0.002). Conclusion: Online videos may not provide accurate and appropriate information on palliative care. There is minimal ethnic diversity in terms of physician and family representation. More research is needed to determine the effectiveness of these videos in improving consumer knowledge of palliative care. [ABSTRACT FROM AUTHOR]

Introduction: Studies show that home-based palliative care (HBPC) improves participant outcomes and satisfaction with care while also decreasing hospitalizations and emergency department visits. U.S. health care payment reforms create financial opportunities to offer HBPC. Consequently, more HBPC programs are emerging, heightening the need to evaluate their effectiveness. Methods: This randomized, controlled trial is comparing the effectiveness of an evidence-based model of HBPC and enhanced usual primary care for participants who receive primary care from medical groups and clinics organized under an accountable care organization or Medicare Advantage plan. Palliative care services are reimbursed by our partnering health plan provider. The five-year trial will enroll 1155 seriously ill participants (and ∼884 of their caregivers) with heart failure, chronic obstructive pulmonary disease, or advanced cancer. We are collecting data via telephone surveys with participants at baseline and one and two months postenrollment and with caregivers at baseline, one and two months postenrollments, and following the death of a loved one. We are collecting participant-reported outcome measures of pain, symptoms, anxiety, depression, participant-provider communication, and hope. Caregiver outcome measures include caregiver burden, communication with providers, anxiety, and depression. Additional outcomes are participant survival time and participants' emergency department visits and hospitalizations. Study Implementation: Challenges and Contributions: Our research team has encountered several significant challenges in early study implementation. These include engaging primary care providers in the study and coordinating logistics with a health plan. Both challenges have contributed to a lag in participant enrollment. Despite these challenges, our study holds tremendous promise to accelerate adoption and spread of an evidence-based HBPC model across the country. [ABSTRACT FROM AUTHOR]

Background: The physician orders for life-sustaining treatment (POLST) form allows seriously ill individuals to express their preferences for end-of-life treatments. Despite increased POLST use, little is known about the quality of completed forms. Objective: We examined the quality of POLST forms prepared for nursing home residents, including whether they had required signatures and clinically consistent care preferences. Design: We conducted a chart review of POLST forms for a sample of nursing home residents in California. Setting/Sample: We completed POLST audits for 938 residents in 13 nursing homes in Los Angeles. Measures: We recorded whether POLST forms were signed by both the patient (or proxy) and the physician, and whether the patient's treatment choices regarding resuscitation and medical intervention were consistent, as required by the California form. Results: Overall, 69.6% of audited POLST forms had at least one indicator of poor quality. Most lacked a required signature (15.8% lacked a physician signature and 17.4% lacked a patient/proxy signature) and 5.6% had conflicting treatment preferences. Conclusion: We found 30.4% of POLST forms for nursing home residents were not complete or documented clinically contradictory treatment preferences. Improvement in the quality of POLST forms is needed. [ABSTRACT FROM AUTHOR]

Background: A primary barrier to physician disclosure of terminal prognosis is concern that patients will lose hope. Inpatient palliative care (IPC) teams are especially posed to mediate this barrier, but little is known about patient perceptions and experience of IPC. Objective: This study aimed to elicit seriously ill patients' perspective and experience of an IPC consultation, and to explore patient attitudes toward information derived from the consultation. Methods: An exploratory, qualitative study was conducted at a large nonprofit community hospital in the Los Angeles area. An established IPC team conducted individualized consults with patients and families within 24 hours of referral. Eligible participants were English-speaking adults, aged 18 or over, who had received an IPC consultation within the previous week during their hospitalization. Purposive recruitment of patients was conducted by the IPC social worker. Interviews were conducted at bedside using a semistructured interview protocol employing open-ended questions. Results: Twelve seriously ill patients were interviewed. Four themes were identified from the interview transcripts: (1) holistic care approach, (2) knowledge/information gained, (3) hope and enlightenment, and (4) patient readiness. Conclusions: Results suggest that disclosure of a terminal prognosis does not mean loss of patient hope. Instead, hope was redefined on a goal other than cure. Presenting patients with information and increasing their knowledge about care options and resources may facilitate patients in identifying meaningful goals that are better aligned with their prognosis. [ABSTRACT FROM AUTHOR]

The article presents a study on older Japanese Americans' perceptions toward hospice care and advance care discussion and planning. Topics covered include how Asians and Pacific Islanders utilize hospice at very low rates compared with whites and other minority groups and the results of the study suggesting that one reason Japanese Americans minimally utilize hospice may be lack of knowledge and misconceptions about hospice and end-of-life care.

Background: Inpatient palliative consultation are generally provided to seriously ill hospitalized patients with the intent to alleviate pain and suffering and develop a plan of care for the patient. Although numerous benefits of this service have been documented, little is known about hospital readmission rates and factors associated with these readmissions. Objective: Our aim was to investigate factors associated with 30-day hospital readmission among patients receiving a consultation from an inpatient palliative care (ICP) team. Design: We conducted a retrospective cohort study. Setting/Subjects: Data from 408 managed care patients 65 years old and older were collected in 2007-2009 following an IPC consultation and subsequent hospital discharge. Measurements: IPC and medical service use records were utilized. Results: Among IPC patients, 10% of those discharged from the hospital were readmitted within 30 days. Factors associated with hospital readmission included being discharged from the hospital with no care in the home or to a nursing facility. Receipt of hospice or home-based palliative care post-discharge was associated with significantly lower odds of hospital readmission. Conclusions: This study found that receipt of palliative care following hospital discharge was an important factor in reducing 30-day hospital readmissions. Further study is needed to evaluate the effectiveness of longitudinal palliative care models in reducing 30-day hospital readmissions among seriously ill patients. [ABSTRACT FROM AUTHOR]

Objectives: To test a brochure comprising hospice patient role model stories aimed at improving attitudes and knowledge of hospice among older African Americans. Design: Pre-post community-based study. Setting: Community-based organizations including senior centers, community exercise programs, churches, and senior care management services in greater Los Angeles area. Participants: Seventy-one African Americans aged 65 and older. Intervention: Hospice brochure containing theoretically driven role model stories portraying African Americans' experience with hospice, their initial attitudes and beliefs about hospice, factors influencing their enrollment in the program, and outcomes following enrollment. Measurements: Change from baseline in attitudes toward, knowledge of, and intentions to enroll in hospice. Results: Mean knowledge scores (range, 0-9) increased from 5.76 (standard deviation [SD] = 2.12) at pretest to 6.95 (SD = 1.90) at posttest ( t = −6.14, p < 0.001). Average attitude toward hospice (range, 12-72) improved 12.5% from 41.16 (SD = 5.20) to 46.29 (SD = 5.45) ( t = −7.52, p < 0.001). Intentions to enroll a family member in hospice increased from 84.5% to 92.9% ( p = 0.002) and intentions to seek hospice care for themselves increased from 83.1% to 95.8% ( p < 0.001). Conclusion: This small pre-post pilot study found that exposure to a hospice brochure containing theoretically driven, culturally parallel, role model stories was effective in improving knowledge of and attitudes toward hospice as well as intentions to enroll a family member or self in hospice care. Further study is needed to determine the impact of using this brochure within a clinical setting. [ABSTRACT FROM AUTHOR]

Background: To develop and grow most effectively, palliative care programs must consider how best to align their mission with that of their institution. To do so, programs must identify their institutional mission and needs, what palliative care can do to address those needs given available resources, and how the palliative care team can measure and document its value. Such an approach encourages the palliative care team to think strategically and to see themselves and their service as a solution to issues and concerns within the institution. It also helps a palliative care team decide which, among many potential opportunities and possible initiatives, is the one most likely to be supported by the institution and have a recognized and significant impact. Subjects and Methods: We present five case studies to demonstrate how successful programs identify and address institutional needs to create opportunities for palliative care program growth. These case studies can serve as models for other programs seeking to develop or expand their palliative care services. [ABSTRACT FROM AUTHOR]

Background: Few studies have examined ease of integrating palliative care programs into hospital culture. The purpose of this article is to report findings from focus groups conducted among physicians and nurses to elicit their perceptions of an inpatient palliative care team consultation service after 1 year of operation. Methods: The study consisted of four homogeneous focus groups drawn from a purposive sample of physicians (2 groups; total n = 16) and nurses (2 groups; n = 17) at a large urban managed care center. Structured interview protocols were used to elicit participant perceptions regarding the impact of implementation. Focus groups were audiotaped and transcribed verbatim. We analyzed the data using grounded theory techniques to elicit themes and subthemes. Results: Five major themes emerged regarding the positive and/or transformational impact of the program on patient/family services, medical staff, the hospital, quality of care, and time. Physician and staff observations regarding perceived barriers to integration included subthemes pertaining to the sharing of information, patient/family resistance and cultural differences, and the need for increased services. Conclusions: The vast majority of comments expressed were related to positive aspects of the program. However, barriers exist that prevent some terminally ill patients from receiving these services. Findings from this study have implications for the need for education and training among providers on palliative and hospice services and, in particular, on the benefits of an inpatient palliative care team for patients, regardless of their attitudes toward end-of-life care programs. [ABSTRACT FROM AUTHOR]

Context: Despite the widespread recognition of the need for new models of care to better serve patients at the end-of-life, little evidence exists documenting the effectiveness of these models. Objective: To evaluate the effectiveness of a palliative program for end-of-life care. Design: A comparison group study was conducted between March 1999 and August 2000 comparing subjects enrolled in a palliative care intervention to those receiving usual care. Setting: Home Health Department at Kaiser Permanente, TriCentral Service Area. Subjects: During the course of the 2-year study, 558 subjects were enrolled. A subgroup of 300 patients who had died during the course of the study was selected for analysis; 161 were enrolled in the Palliative Care Program and 139 in the comparison group. Intervention: The Kaiser Permanente Palliative Care Project is a multidisciplinary care management approach for home-based end of life care and treatment. The program is designed to facilitate the transition from acute to palliative care during the last 12 months of life with the goal of improving quality of life through the provision of symptom control and pain relief, emotional and spiritual support, and patient education. Main outcome measures: Medical service use and satisfaction with services. Results: Palliative care patients had increased satisfaction with services at 60 days after enrollment and significantly fewer emergency department visits, hospital days, skilled nursing facility days, and physician visits than those in the comparison group. Those enrolled in palliative care averaged a 45% decrease in costs as compared to usual care patients. Conclusion: Through integrating palliative care into curative care practices earlier in the disease trajectory, chronically ill patients nearing the end of life report improved satisfaction with care and demonstrate less acute care use resulting in lower costs of care. In addition, patients enrolled in the palliative care program were more likely to die at home than comparison group patients. [ABSTRACT FROM AUTHOR]

The article focuses on struggles faced by community-based palliative care (CBPC) providers in introducing this service to seriously ill patients and their caregivers. It mentions that the program target services to patients with serious illnesses, and may restrict care to those who have had multiple emergency department or hospital visits.

A letter to the editor is presented regarding the need to evaluate palliative care programs that will match the needs of patients to close the service gap that was published in a previous 2016 issue.