The American journal of hospice & palliative care最新文献

Background: Multiple debilitating symptoms and the progressive nature of Parkinson's disease (PD) affect carepartners' quality of life. Although, there is abundant knowledge on caregiver burden there is limited knowledge on PD carepartners' perceptions of caregiving.

Aim: To understand family members' perception of their role, and of the challenges and rewards of PD caregiving.

Method: Using a qualitative descriptive research design, we conducted semi-structured interviews with current and former PD carepartners (n = 16). Interviews were audio-recorded, de-identified, and transcribed verbatim. Data were coded and analyzed to identify themes.

Results: We identified 5 themes: (a) Unpredictability is the hardest part of caregiving. It was hard to cope with the unpredictable daily and longer-term fluctuations in PD symptoms; (b) Disease progression and multiple symptoms contribute to carepartners' emotional distress. Carepartners felt unprepared and were saddened by the patient's and their own losses; (c) Caring for a family member is not a "burden." Though stressful, carepartners resisted associating caregiving with the term "burden"; (d) Caregiving is a partnership. Carepartners saw their role as being less of "givers" and more of partners in disease management; and (e) Caregiving is an opportunity for personal satisfaction, joy, and growth. Caregiving was seen as a "gift" that enabled carepartners to express love and experience personal growth.

Conclusions: Despite challenges PD carepartners view their role as "partners" in the management of the disease and find meaning and strength in caregiving. A palliative care approach emphasizing the positives and challenges of caregiving may provide carepartners with better support.

Background: As cancer patients approach the end of life, their needs become more complex, increasing the demand for palliative care. Advanced-stage cancer patients encounter increasing unmet psychological, physical, autonomy, and communication needs, reflecting the difference between patients' perceived requirements and the support from health care professionals. The objective of this study was to synthesize qualitative evidence on unmet needs in palliative cancer care among inpatient and outpatient adults.

Methods: We conducted a meta-ethnographic review according to Noblit and Hare's framework and the operationalized guidelines developed by Sattar. The eMERGe Reporting Guidance was followed. A literature search was conducted in Cinahl, Embase, Medline, Scopus, Web of Science, PsycINFO and Google Scholar for gray literature. For all the studies, direct quotes from the participants and authors' results were identified, coded and analyzed in NVivo 1.7.1 and extracted as I and II order constructs from which higher third-order themes originated.

Results: Eight studies were included. Four new themes emerged, representing areas where palliative cancer care patients expressed a need for help: the need for comprehensive, patient-centered care, the need for maintaining a sense of autonomy and dignity, the need for attentive support to patients' soul and the need for accessible and timely care.

Conclusions: Palliative care patients require a secure, suffering-free end-of-life journey with informed decision-making and team support. Ensuring continuity of care, validating their suffering, and allocating sufficient time are crucial aspects of care. This involves maintaining a consistent care plan, respecting patients' emotions and experiences, and providing services tailored to individual needs.

Pediatric hospice is a new terminology in current medical literature. Implementation of pediatric hospice care in oncology setting is a vast but subspecialized field of research and practice. However, it is accompanied by substantial uncertainties, shortages and unexplored sections. The lack of globally established definitions, principles, and guidelines in this field has adversely impacted the quality of end-of-life experiences for children with hospice needs worldwide. To address this gap, we conducted a comprehensive review of scientific literature, extracting and compiling the available but sparse data on pediatric oncology hospice from the PubMed database. Our systematic approach led to development of a well-organized structure introducing the foundational elements, highlighting complications, and uncovering hidden gaps in this critical area. This structured framework comprises nine major categories including general ideology, population specifications, role of parents and family, psychosocial issues, financial complications, service locations, involved specialties, regulations, and quality improvement. This platform can serve as a valuable resource in establishing a scientifically reliable foundation for future experiments and practices in pediatric oncology hospice.

Background: Compassion is a relational response to patients' suffering. Palliative care focuses not only on skills but also on compassion. Nevertheless, incorporated patient perspectives are largely missing from existing research. Aim: Our mixed-method exploratory study in a major Swiss cancer center sought to better understand compassionate presence, its benefits and challenges for patients and providers (ie, close relatives, close friends, and professionals-all referred to here as providers). It also investigated providers' motivation. Method: Twelve multidisciplinary, specially trained professionals interviewed 50 patients who had received compassionate presence. All patients had advanced cancer with risk of death. Providers were also interviewed. Data on the positive and burdensome effects of compassionate presence on patients and providers were gathered using a specific protocol. This also served to record patients' characteristics and providers' motivations to give compassion and whether providers felt sustained (eg, by nature). Results: The study suggests a high impact of compassionate presence with benefits on patients (50/50) and on providers (49/50). Enhanced connectedness was evident not only in the patient-provider relationship (38/50) but also, for instance, in an increased ability to love (8/50) or in an intensified solidarity (29/50). A considerable number of patients and providers experienced mental-spiritual change but also burdensome effects (eg, ambivalences). Providers showed a range of motivations. Conclusion: Compassion is not only necessary in existential crises and near death, but also happens and takes considerable effects precisely in such situations.

Background: In 2019, the São Paulo State Cancer Institute (ICESP) implemented a novel model integrating Oncology with Palliative Care specialists. We evaluated the impact of this model on healthcare resource utilization and costs. Methods: We analyzed data from all patients who passed away in February (1 month prior to implementation) and November (8 months after model implementation group) at ICESP, Brazil. Healthcare utilization data, including emergency department visits, hospital and intensive care unit admissions, chemotherapy, and radiotherapy use, were retrieved from Electronic Medical Records. Unit cost values were obtained from the administrative database. Results: A total of 198 patients who died in February and 196 in November were included in the analysis. Groups exhibited similarities in sex, age, ECOG, cancer type, previous outpatient palliative care consultations, and place of death (ward: 56.6% pre-intervention, 50% post-intervention). The mean cost per patient was US$13,226.29 pre-intervention and US$11,445.82 post-intervention (P = .007). Statistically significant differences were noted in days hospitalized in the surgical ward (227 vs 115), emergency department visits (233 vs 45), chemotherapy sessions (140 vs 26), and radiotherapy sessions (146 vs 10). Excluding outpatient treatments, the total costs for chemotherapy and radiotherapy in the last 30 days of life were US$16,924.45 pre-intervention and US$7851.65 post-intervention. Reductions were more pronounced in patients with ECOG 3-4 (P = .039). Conclusion: Our data suggests that the integration model was associated with a reduction in potentially inappropriate treatments during the last month of life, leading to decreased healthcare utilization and costs.

This article makes a case for examining dying person's visions during wakefulness and their dreams during sleep as separate and unique phenomena. The reason being that the mode of experience, for example, being visited by a deceased loved one while awake and conscious vs having a deceased loved one appear in a dream while asleep, may have a different impact on the dying person. A better understanding of the content and impact of waking visions and sleeping dreams, respectively, may be beneficial to both dying persons and their families.

Background: Hospice family caregivers (HFCGs) support the needs of their loved ones but are at risk of developing distress and anxiety. NOVELA is a four-chapter telenovela-style educational video to support topics related to hospice caregiving. Telehealth visits are scheduled in 4 weekly sessions consisting of a chapter and subsequent discussion with an interventionist. This feasibility pilot study tested NOVELA's effect to change HFCGs' outcomes, session and outcome measure completion (defined a priori as >70%).

Methods: This is a single-group pretest-posttest study of HFCGs of care recipients with PPS score >20% from 3 hospices in the U.S. Mid-Atlantic region. At baseline and at final posttest, participants completed a web-based survey assessing 3 outcomes: anxiety, self-efficacy, and satisfaction with intervention. Descriptive, t-test, and chi-square statistics were computed.

Results: Participants in our study (N = 59) were mainly collage educated, White, female, adult children of home-bound people with a non-cancer diagnosis. Outcomes changed in the expected direction (P > .05) with higher self-efficacy (Cohen's d = -.08 [95% CI -.4 to .2) and lower anxiety (Cohen's d = .2 [95% CI -.1 to .5]) scores from final to baseline, 86% of HFCGs were satisfied or very satisfied with NOVELA, session (33/59) and outcome measure (43/59) completion averaged 68%.

Conclusion: Encouraging trends in NOVELA's estimation of effect suggests that NOVELA may buffer stressful aspects of hospice caregiving. However, further refinement of NOVELA is needed. Supporting HFCGs through supportive educational interventions may reduce distress and anxiety with broad implications for quality improvement.

Background: Advance care planning in adults with kidney failure has been understudied and limited to written advance directives. Many Black adults prefer informal conversations with family, and yet this form of advance care planning is underexplored in research. In this study, we aimed to identify the multilevel factors that facilitate informal advance care planning with family among Black adults with kidney failure. Methods: Black adults with kidney failure were recruited using the electronic health record to identify prospective participants who met inclusion criteria from a metropolitan hospital in the Mid-Atlantic region of the United States from June 2021 to June 2022. Participants completed a survey capturing the personal, interpersonal, and structural level factors that facilitate informal advance care planning conversations with family, and sociodemographic characteristics. Results: The study included 301 respondents, 66% engaged in informal advance care planning and 37% completed an advance directive. Mean age was 56 years, 52% were female, 25% received a high school education or less. Illness acceptance (OR 1.07, P = 0.04) and emotional support (OR 1.44, P = 0.02) facilitated Informal advance care planning, as did having master's or doctoral level education (OR 2.37, P = 0.04). A recent hospitalization (OR 1.79, P = 0.04) and experience as a surrogate decision maker (OR = 1.76, P = 0.05) also facilitated Informal advance care planning. Conclusions: Informal advance care planning conversations occur more frequently than written directives among Black adults with kidney failure. Future interventions should consider cultural preferences by developing interventions that facilitate informal advance care planning conversations with family.

Background: Patients with advanced cancer frequently have a wide range of mental and physical symptoms, making it difficult for them to communicate and make informed decisions. Necessitating the incorporation of palliative care in this population to meet their supportive care requirements. Objective: To investigate the effects of integrating Palliative care in advanced cancer patients. Methods: PubMed, EMBASE, Cochrane Central Register of Controlled Trials (CENTRAL), and Google Scholar databases were comprehensively and systematically searched for Randomized clinical trials (RCTs) published up to February 2024. According to the PICOS criteria, trials enrolling adult patients with advanced cancer subjected to PC were included. Moreover, a risk of bias assessment was performed using the Cochrane Risk of Bias tool, and statistical analyses were performed using the Review Manager software. Results: Only 13 RCTs with 3,294 advanced cancer patients were included in the final analysis. A pooled analysis of data from these trials revealed that patients subjected to PC had improved quality of life (QoL) scores than those receiving standard care (SMD: 0.18; 95% CI: 0.07 - 0.30; p = 0.002). However, no significant difference was observed in depression (SMD: -0.03; 95% CI: -0.16 - 0.10; p = 0.63), anxiety (SMD: - 0.04; 95% CI: -0.23 - 0.15; p = 0.69), and survival (OR: 0.81; 95% CI: 0.56 - 1.16; p = 0.25). Conclusion: Integrating PC in patients with advanced cancer results in improved QoL with limited effect on psychological distress symptoms.

Serious illness is rarely experienced by patients in isolation.  Many patients present to palliative care (PC) accompanied by their intimate partner. The intimate partnership is a critical axis around which many patients' experiences of serious illness revolve. However, there is a lack of literature and training on how PC clinicians can effectively support couples as a unit. Many existing PC communication strategies can be expanded to the dyadic unit, offering more holistic support for patients, partners, and the entity of their relationship. This paper integrates concepts from couples therapy, psychology, and PC communication to provide insights into the emotional, psychological, interpersonal, and practical challenges couples face during serious illness, as well as opportunities for growth and resilience. Key strategies for PC clinicians include helping couples navigate shifts in relational identity, share the "emotional housework," and transform conflict into connection. Concrete techniques are illustrated throughout this manuscript, employing clinical micro-vignettes to demonstrate their practical application in PC practice. Recognizing the couple as a unified entity empowers clinicians to foster open communication, helping couples maintain connection and evolve intimacy throughout the illness journey. By applying relational concepts and acknowledging the couple's shared experience, PC clinicians can enhance the quality of life for both patients and their partners. Conceptualizing the couple as a distinct entity within PC practice can deepen clinician-patient communication and improve therapeutic effectiveness.