Book Review: Wittenberg, E., Goldsmith, J. V., Ragan, S. L., & Parnell, T. A. (2020). Caring for the Family Caregiver: Palliative Care Communication and Health Literacy. Oxford University Press.

Caring for the Family Caregiver is published by Oxford University Press and introduces the novel framework of the Family Caregiver Communication Typology. The volume offers a close analysis of caregiver health literacy and patient outcomes and invites readers to consider the family system as the driver in shaping how family caregivers deal with chronic illness demands. The expertise of all authors (three health communication scholars and one nurse who is a health literacy expert) in the analysis illuminates the delicate balance between caregivers' ability to understand and communicate in the context of social determinants of health. The book shares the interwoven challenges of palliative care, family caregiving, and health literacy. Caring for the Family Caregiver establishes the urgent call to address family caregiver information and communication needs and leaves the reader empowered to make changes in their own clinical practice communication and/or develop family caregiving research that addresses cultural and social factors.

Palliative care services in pediatric oncology.

Pediatric cancer has experienced significant improvement in overall survival rates over the past several decades. Despite this progress, however, it remains the leading cause of death from disease beyond infancy in children. Among the children and adolescents that survive their cancer diagnosis, significant symptom burden and toxicities of therapy are often experienced. The evidence presented affords great insight in to the current empirical support for pediatric palliative care involvement, current utilization of palliative care services in the care of children with cancer and their families, and barriers that have been identified to date. Positive trends toward increased, appropriate integration of palliative care services in the care of children with cancer and their families have been observed. Continued research, advocacy, and education are necessary to optimize the care of this vulnerable population of patients and their families.

Randomized clinical trial of a community navigation intervention to improve well-being in persons living with HIV and other co-morbidities.

Long-term survival of people living with HIV (PLWH) is associated with the development of co-morbid conditions and need for symptom management and other efforts to enhance quality of life. We conducted a longitudinal, randomized trial over 36 months to evaluate the effect of a community-based navigator intervention to provide early palliative care to 179 PLWH and other chronic conditions. Outcomes included quality of life, symptom management, coping ability, social support, self-management, and completion of advance directives. Data were analyzed using SAS mixed effects model repeat measurement. Our navigator program showed variable improvement over time of three outcome variables, self-blame, symptom distress, and HIV self-management. However, the program did not improve overall quality of life, social support, or completion of advance directives.

Knowledge, Beliefs, and Behaviors Related to Palliative Care Delivery Among Pediatric Oncology Health Care Providers.

The care of pediatric patients with cancer and their families is complex and rapidly evolving. Despite significant advances in outcomes, symptoms of the disease and complications of therapy continue to cause suffering that may improve with the involvement of pediatric palliative care (PPC) services. This descriptive study responds to the observation of great variability in PPC utilization within pediatric oncology. Data collected from 156 health care professionals (nurses, advanced practice professionals, and physicians) from a statewide hematology alliance evaluates the knowledge, beliefs, and perceived barriers to PPC involvement. Data analysis reveals significant variability when comparing respondents from professional roles and practice environments. Despite progress in PPC availability, care delivery remains incongruent with current recommendations. Knowledge gained from this study emphasizes the important role for all health care providers in advocating for support of PPC programs, educating the public, and committing to intentional involvement of PPC services while caring for pediatric oncology patients.

Mindful Communication: Being Present.

OBJECTIVES: To review how mindfulness can be elicited in and strategically managed through communication, with a goal toward enhancing the patient/family relationship in the experience of cancer care. DATA SOURCES: Published, peer-reviewed literature, research reports, and Web-based resources. CONCLUSION: Mindful communication, an active process whereby the health care provider and patient /family unit are attentive to the timing, nature, and context of the dialogue exchange, helps direct care that is patient-centered, reflective, and relational. IMPLICATIONS FOR NURSING PRACTICE: Oncology nurses using a patient-centered approach to communication will be more equipped to use mindfulness-based strategies that can potentially shift the way cancer care is delivered.

Perceptions of Statin Discontinuation among Patients with Life-Limiting Illness.

BACKGROUND: Optimal management of chronic medications for patients with life-limiting illness is uncertain. Medication deprescribing may improve outcomes in this population, but patient concerns regarding deprescribing are unclear. OBJECTIVE: The aim of this study was to quantify the perceived benefits and concerns of statin discontinuation among patients with life-limiting illness. DESIGN: Baseline data from a multicenter, pragmatic clinical trial of statin discontinuation were used. SETTING/SUBJECTS: Cognitively intact participants with a life expectancy of 1-12 months receiving statin medications for primary or secondary prevention were enrolled. MEASUREMENTS: Responses to a 9-item questionnaire addressing patient concerns about discontinuing statins were collected. We used Pearson chi-square tests to compare responses by primary life-limiting diagnosis (cancer, cardiovascular disease, other). RESULTS: Of 297 eligible participants, 58% had cancer, 8% had cardiovascular disease, and 30% other primary diagnoses. Mean (standard deviation) age was 72 (11) years. Fewer than 5% of participants expressed concern that statin deprescribing indicated physician abandonment. About one in five participants reported being told to take statins for the rest of their life (18%) or feeling that discontinuation represented prior wasted effort (18%). Many participants reported benefits of stopping statins, including spending less money on medications (63%), potentially stopping other medications (34%), and having a better quality of life (25%). More participants with cardiovascular disease as a primary diagnosis perceived that quality-of-life benefits related to statin discontinuation (52%) than participants with cancer (27%) or noncardiovascular disease diagnoses (27%) [p = 0.034]. CONCLUSION: Few participants expressed concerns about discontinuing statins; many perceived potential benefits. Cardiovascular disease patients perceived greater potential positive impact from statin discontinuation.

Palliative Care, Hospice, and Advance Care Planning: Views of People Living with HIV and Other Chronic Conditions.

People living with HIV (PLWH) who survive to older adulthood risk developing multiple chronic medical conditions. Health policymakers recognize the role of early palliative care and advance care planning in improving health quality for at-risk populations, but misperceptions about palliative care, hospice, and advance care planning are common. Before testing a program of early palliative care for PLWH and other chronic conditions, we conducted focus groups to elicit perceptions of palliative care, hospice, and advance care planning in our target population. Overall, participants were unfamiliar with the term palliative care, confused concepts of palliative care and hospice, and/or associated hospice care with dying. Participants misunderstood advance care planning, but valued communication about health care preferences. Accepting palliative care was contingent on distinguishing it from hospice and historical memories of HIV and dying. Provision of high-quality, comprehensive care will require changing public perceptions and individuals' views in this high-risk population.

Safety and benefit of discontinuing statin therapy in the setting of advanced, life-limiting illness: a randomized clinical trial.

IMPORTANCE: For patients with limited prognosis, some medication risks may outweigh the benefits, particularly when benefits take years to accrue; statins are one example. Data are lacking regarding the risks and benefits of discontinuing statin therapy for patients with limited life expectancy. OBJECTIVE: To evaluate the safety, clinical, and cost impact of discontinuing statin medications for patients in the palliative care setting. DESIGN, SETTING, AND PARTICIPANTS: This was a multicenter, parallel-group, unblinded, pragmatic clinical trial. Eligibility included adults with an estimated life expectancy of between 1 month and 1 year, statin therapy for 3 months or more for primary or secondary prevention of cardiovascular disease, recent deterioration in functional status, and no recent active cardiovascular disease. Participants were randomized to either discontinue or continue statin therapy and were monitored monthly for up to 1 year. The study was conducted from June 3, 2011, to May 2, 2013. All analyses were performed using an intent-to-treat approach. INTERVENTIONS: Statin therapy was withdrawn from eligible patients who were randomized to the discontinuation group. Patients in the continuation group continued to receive statins. MAIN OUTCOMES AND MEASURES: Outcomes included death within 60 days (primary outcome), survival, cardiovascular events, performance status, quality of life (QOL), symptoms, number of nonstatin medications, and cost savings. RESULTS: A total of 381 patients were enrolled; 189 of these were randomized to discontinue statins, and 192 were randomized to continue therapy. Mean (SD) age was 74.1 (11.6) years, 22.0% of the participants were cognitively impaired, and 48.8% had cancer. The proportion of participants in the discontinuation vs continuation groups who died within 60 days was not significantly different (23.8% vs 20.3%; 90% CI, -3.5% to 10.5%; P=.36) and did not meet the noninferiority end point. Total QOL was better for the group discontinuing statin therapy (mean McGill QOL score, 7.11 vs 6.85; P=.04). Few participants experienced cardiovascular events (13 in the discontinuation group vs 11 in the continuation group). Mean cost savings were $3.37 per day and $716 per patient. CONCLUSIONS AND RELEVANCE: This pragmatic trial suggests that stopping statin medication therapy is safe and may be associated with benefits including improved QOL, use of fewer nonstatin medications, and a corresponding reduction in medication costs. Thoughtful patient-provider discussions regarding the uncertain benefit and potential decrement in QOL associated with statin continuation in this setting are warranted. TRIAL REGISTRATION: clinicaltrials.gov Identifier: NCT01415934.

Integrating palliative care into active cancer treatment.

OBJECTIVES: To describe the evidence that palliative care, provided concurrently with disease-modifying treatment early in the course of a cancer diagnosis, can improve quality of life, length of survival, symptom burden, mood, and utilization of health services. DATA SOURCES: Current research, the National Consensus Guidelines for Quality Palliative Care, and the American Society of Clinical Oncology Provisional Opinion on Integrating Palliative Care into Standard Oncology Care. CONCLUSION: Despite recommendations and evidence, only a subset of cancer centers and community-based oncology clinics currently implement palliative care into ambulatory disease-focused cancer care. IMPLICATIONS FOR NURSING PRACTICE: Oncology nurses can improve access by becoming knowledgeable about generalist palliative care and by advocating for local and national practice change.

Ethical conduct of palliative care research: enhancing communication between investigators and institutional review boards.

Palliative care has faced moral and ethical challenges when conducting research involving human subjects. There are currently no resources to guide institutional review boards (IRBs) in applying standard ethical principles and terms-in a specific way-to palliative care research. Using as a case study a recently completed multisite palliative care clinical trial, this article provides guidance and recommendations for both IRBs and palliative care investigators to facilitate communication and attain the goal of conducting ethical palliative care research and protecting study participants while advancing the science. Beyond identifying current challenges faced by palliative care researchers and IRBs reviewing palliative care research, this article suggests steps that the palliative care research community can take to establish a scientifically sound, stable, productive, and well-functioning relationship between palliative care investigators and the ethical bodies that oversee their work.

Advancing the science of hospice care: Coalition of Hospices Organized to Investigate Comparative Effectiveness.

PURPOSE OF REVIEW: There is very little high-quality evidence to guide clinical practice in hospice care. In the areas of medical therapy, patient-centered and family-centered outcomes, and patient safety, there are numerous high-impact questions for which answers are needed. Although randomized controlled trials are the gold standard for research, such trials are difficult, time consuming, and expensive to conduct in a hospice population. Moreover, they cannot examine the implementation of therapies in real-world settings. Therefore, there is a need for novel, complementary approaches to research in this unique population. RECENT FINDINGS: This article describes the initial experience of the Coalition of Hospices Organized to Investigate Comparative Effectiveness (CHOICE). CHOICE is a national network of hospices that use electronic health record-based data collection procedures to answer key questions relevant to clinical care and policy. By using a rich source of existing data to conduct observational studies, CHOICE is able to overcome many of the most significant challenges of randomized controlled trials in hospice. However, this approach also created unique challenges related to governance and privacy concerns. SUMMARY: CHOICE is a growing research network that has the potential to make a contribution to the science of palliative care in a hospice population.

Providing a "good death" for oncology patients during the final hours of life in the intensive care unit.

Cancer is a leading cause of death in the United States. Aggressiveness of cancer care continues to rise in parallel with scientific discoveries in the treatment of a variety of malignancies. As a result, patients with cancer often require care in intensive care units (ICUs). Although growth in hospice and palliative care programs has occurred nationwide, access to these programs varies by geographic region and hospital type. Thus, critical care nurses may be caring for patients with cancer during the final hours of life in the ICU without the support of palliative care experts. This article provides an overview of the meaning of the final hours of life for cancer patients and uses principles of a "good death" and the tenets of hospice care to organize recommendations for critical care nurses for providing high quality end-of-life care to patients with cancer in the ICU.

Lack of communication and control: experiences of distance caregivers of parents with advanced cancer.

PURPOSE/OBJECTIVES: To explore the new and complex phenomenon of distance caregiving in the advanced cancer population. RESEARCH APPROACH: Qualitative. SETTING: A large comprehensive cancer center in the midwestern region of the United States. PARTICIPANTS: 14 distance caregivers of parents with advanced cancer. METHODOLOGIC APPROACH: Patients with advanced lung, gastrointestinal, and gynecologic malignancies consented to have their distance caregiving adult children contacted to participate in the study. Responses to three open-ended questions guided the tape-recorded telephone interviews with the distance caregivers. Following transcription, content analysis with inductive coding was performed. FINDINGS: Two major themes, communication and control, and five subthemes, benefits and burdens of distance caregiving, dealing with uncertainty, direct action through information seeking, protecting, and staying connected, emerged from the data. CONCLUSIONS: Distance caregivers experience some of the same stressors that local caregivers of patients with cancer experience. In addition, they have unique psychosocial needs related to the burden of geographic distance. INTERPRETATION: Distance caregivers could benefit from nursing interventions targeted at their unique needs. Innovative interventions using Web-based computer technology for improved communication, as well as supportive care interventions, may be helpful.

The effects of integrating an advanced practice palliative care nurse in a community oncology center: a pilot study.

Despite the widespread recognition of the need for new models of care to better serve patients with advanced cancer, little evidence exists to document the effectiveness of these models. The purpose of this pilot study was to investigate the integration of an on-site palliative care (PC) advanced practice nurse (APRN) in the community oncology setting and the effect of PC services on patients with advanced cancer compared with usual care. This study utilized a descriptive, pre/post design with 101 adult patients with advanced cancer. Patient accrual occurred for 5 months in the usual care period (n=52), followed by 5 months of accrual after implementation of the PC APRN (n=49). Data were collected at enrollment and 4 months post enrollment. Data were analyzed using independent t-tests and logistic regression analyses. Controlling for health-related quality-of-life variables, 10 covariates were entered into two logistic regression models, with hospitalization and mortality as outcome measures. Patients who had palliative care had a significantly lower mortality rate at 4 months (odds ratio = 24.6; P = 0.02) and had an 84% decrease in the odds of being hospitalized (odds ratio = 0.16; P < 0.01). Contrary to popular belief, PC services can be effectively provided to patients as they receive chemotherapy treatment and are not associated with increased mortality. Access to a PC APRN integrated into the community oncology setting may be associated with measurable benefits.

When hospice is the best option: an opportunity to redefine goals.

More than 50% of patients diagnosed with cancer in 2008 died in the same year, according to estimates from the American Cancer Society. Clearly, while survival rates for many cancers continue to improve, a significant number of patients with cancer will not survive their disease. Hospice care provides terminally ill patients with a unique set of benefits, services, and support. Its goal is neither to prolong life nor hasten death, but rather to provide total care that maximizes quality of life. Less than one-third of patients receive hospice care near the end of life, however, and many referred patients die within days. Many barriers and misconceptions related to hospice care can prevent timely referrals and impede discussions. Also, conversations about goals of care, treatment preferences, and advanced care planning can be challenging and overwhelming. This article reviews the hospice care model and highlights ways in which oncology nurses can make a difference in how patients live their final days.

Improving the quality of spiritual care as a dimension of palliative care: the report of the Consensus Conference.

A Consensus Conference sponsored by the Archstone Foundation of Long Beach, California, was held February 17-18, 2009, in Pasadena, California. The Conference was based on the belief that spiritual care is a fundamental component of quality palliative care. This document and the conference recommendations it includes builds upon prior literature, the National Consensus Project Guidelines, and the National Quality Forum Preferred Practices and Conference proceedings.

Understanding the meaning of social well-being at the end of life.

PURPOSE/OBJECTIVES: To advance understanding of the social well-being domain, a dimension of quality of life, from the perspective of dying individuals. RESEARCH APPROACH: Qualitative, hermeneutic, and phenomenologic. SETTING: Private residences in a community setting. PARTICIPANTS: 8 terminally ill adult patients with cancer, aged 35-75, enrolled in hospice care. METHODOLOGIC APPROACH: In-depth, semistructured, tape-recorded, and transcribed interviews were analyzed using the Giorgi method. MAIN RESEARCH VARIABLES: Social well-being and quality of life at the end of life. FINDINGS: Six themes emerged that described the meaning of close personal relationships at the end of life: meaning of relationships with family, friends, and coworkers; meaning of relationships with God or a higher power; loss and gains of role function; love; gratitude; and lessons on living. CONCLUSIONS: Patients who were terminally ill with advanced cancer expressed the importance of close personal relationships at the end of life and the need to communicate their importance through love and gratitude. All participants believed that personal relationships were strengthened by the end-of-life experience. INTERPRETATION: Nurses can support terminally ill patients by understanding the importance of social relationships at the end of life. The relationships may be enhanced when nurses raise patients' conscious awareness of the relationships and encourage them to express their importance.

Moving beyond the anecdotal. Identifying the need for evidence-based research in hospice and palliative care.

The paucity of research in hospice and palliative care has resulted in the absence of a sound, scientific foundation for clinical practice. Most clinical practice performed in this area has not received systematic evaluation and therefore lacks scientific credibility. Many barriers exist, however, that present unique challenges for research with patients and families who have life-limiting illness. Evaluation of key components for the successful performance of interdisciplinary research and integration in clinical settings are explored.

Relationships among communicative acts, social well-being, and spiritual well-being on the quality of life at the end of life in patients with cancer enrolled in hospice.

BACKGROUND: The importance of communication in close, personal relationships has been well-documented. At the end of life, communication, social relationships, and spirituality seem to have greater importance. Some studies suggest that the quality of life at the end of life (QOLEOL) involves these components. OBJECTIVE: The primary aim of this study was to investigate the communicative acts of love, gratitude, and forgiveness, and to explore the extent to which the communicative acts, social well-being, and spiritual well-being predict the overall QOLEOL when controlling for physical symptoms. DESIGN: Cross-sectional, descriptive, correlational design. SETTING/SUBJECTS: A convenience sample of all adult hospice patients, aged 35-80, with a cancer diagnosis, residing in their private home in a community setting, was recruited from a large, non-profit hospice program in the midwestern United States. MEASUREMENTS: Patients completed the Functional Assessment of Cancer Therapy-General (FACT-G) social/family well-being subscale, the JAREL Spiritual Well-Being tool, an investigator-designed tool to measure communicative acts, and the global, single-item QOL indicator of the QUAL-E. RESULTS: Strong, positive correlations among social and spiritual well-being, communicative acts, and QOLEOL were found (p < 0.01). Spiritual well-being most significantly predicted the QOLEOL, explaining 53.5% of explained variance in the QOLEOL. Although not statistically significant, the communicative acts of love and gratitude made a small contribution to the overall model. The communicative act of forgiveness did not perform well. CONCLUSIONS: The knowledge gained through this investigation laid the groundwork for future studies in identifying the importance of explicitly assessing relationships and supporting patients and families in their communication. In order to learn more about this phenomenon and establish a foundation for intervention, confirmation is required regarding the connections between the spiritual and social domains, the relationships between the specific communicative acts and the QOLEOL, as well as establishment of valid measurement approaches.

Virtual reality as a distraction intervention for women receiving chemotherapy.

PURPOSE/OBJECTIVES: To explore the use of virtual reality as a distraction intervention to relieve symptom distress in women receiving chemotherapy for breast cancer. DESIGN: Crossover study. SETTING: The outpatient clinic of a midwestern comprehensive cancer center. SAMPLE: 20 women 18-55 years of age. METHODS: Using a crossover design, 20 subjects served as their own controls. For two matched chemotherapy treatments, one pretest and two post-test measures were employed. Participants were assigned randomly to receive the virtual reality distraction intervention during one chemotherapy treatment and received no distraction intervention (control condition) during an alternate chemotherapy treatment. An open-ended questionnaire elicited each subject's evaluation of the intervention. MAIN RESEARCH VARIABLES: Symptom distress, fatigue, anxiety. FINDINGS: Significant decreases in symptom distress and fatigue occurred immediately following chemotherapy treatments when women used the virtual reality intervention. CONCLUSIONS: The distraction intervention decreased symptom distress, was well received, and was easy to implement in the clinical setting. IMPLICATIONS FOR NURSING: Nursing interventions to manage chemotherapy-related symptom distress can improve patient quality of life and increase chances for survival by reducing treatment-related symptom distress and enhancing patients' ability to adhere to treatment regimens and cope with their disease.