American Journal of Hospice & Palliative Medicine最新文献

Clinician-healers bear witness to suffering and accompany patients and families through the liminal spaces of an illness experience. Bearing witness to a patient's suffering is a form of attunement toward the ill or hospitalized person. Non-action, or wu wei, becomes illustrative of the empathy that develops as clinicians bear witness to the suffering of patients and families. This empathic response highlights the clinician's moral obligation to accompany their patients. Accompaniment is a form of "co-action" which orients the clinician to a mutual relationship with patients and families. Co-action incites new meaning-making within the liminal spaces and holds the potential to change the clinician's identity as practitioner and healer.

Introduction: Advance care planning (ACP), a critical component of quality dementia care, is underutilized due to lack of clinician comfort and the challenging nature of ACP in this context. The Serious Illness Conversation Guide (SICG) is a well-validated clinician-facing tool, developed with patient and clinician input, to facilitate ACP. The aim of this project was to adapt the SICG for dementia for the first time to promote high-quality ACP. Methods: This study uses a mixed-methods approach to adapt the SICG tool for use in dementia care. Experts with relevant clinical, ethical, and topical knowledge were interviewed to develop alterations to the SICG for dementia care. Patients and caregivers were shown a mock interview of the adapted SICG for dementia (SICG-D) to elicit feedback. Results: 8 relevant experts were interviewed. Adaptations included topical alterations to make the conversation more applicable to dementia as well as alterations to the structure of the conversation to accommodate the patient-caregiver dyad. Twenty interviews were conducted with 14 patients and 18 caregivers (either together or separately). A thematic content analysis of interview transcripts demonstrated positive impressions of the tool. In anonymous survey results, 94% reported a positive impression of the conversation and 89% endorsed incorporation of the adapted guide into dementia healthcare. Conclusion: This paper presents the SICG-D, an adapted version of the SICG for use in dementia care. This guide leverages the strengths of the SICG to promote values-based ACP conversations and has been adapted to better facilitate patient-caregiver-clinician triadic communication.

A proposal to create a new name for our specialty: Eleology.

Background: Assessing and managing hospice patients' pain is a common source of anxiety among hospice family caregivers (HFCGs), especially caregivers in rural communities who face special challenges including distance, limited access, and concerns about opioid misuse.

Objective: To pilot test Ready2Care, a pain management education intervention for rural HFCGs. We sought to determine whether there was a signal of benefit for clinically-relevant outcomes and to identify contextual factors pertinent to conducting a future randomized clinical trial of Ready2Care.

Methods: We conducted a multi-method, single-arm study, enabling completion of paired t-tests comparing pre- and post-intervention measures of caregiver anxiety, pain management self-efficacy, barriers to pain management, and reports of patient pain intensity and corresponding patient and caregiver distress. We concurrently conducted an embedded implementation evaluation via calculation of descriptive statistics (recruitment and retention data) and directed content analysis of brief caregiver interviews.

Results: Twenty-seven (n = 27) HFCGs participated; 15 completed the study. Among completers, significant improvement was observed in patient pain intensity (average 1.4 points decrease on 0-10 scale) and in overall pain experience. No statistically significant changes were detected in caregiver anxiety, barriers to pain management, or pain management self-efficacy. Facilitators to successful conduct of a future clinical trial included high acceptability of Ready2Care, driven by its perceived clarity and relevance to caregivers' concerns. Barriers included lower-than-anticipated accrual and an attrition rate of nearly 44%.

Conclusion: A multisite clinical trial of Ready2Care is warranted; however, its success may require more effective recruitment and retention strategies for rural caregiver participants.

Background: Advanced cancer patients benefit less from aggressive therapies and more from goal-directed palliative management. Early and clearly documented goals-of-care discussions, including end-of-life decision making, are essential in this patient population. Integrated healthcare systems are comprehensive care models associated with improved quality of care and lower mortality compared to other healthcare models. The role of advance care planning within our system is understudied. Methods: Patients 18 years and older with a diagnosis of advanced-stage cancer were identified over a 6-month period. Expert panel review was performed to evaluate medical appropriateness of the selected diagnostic workup and management. The role and extent of care planning was reviewed in association with the clinical context. Results: In a cohort of 82 patients, evidence-based and individualized appropriateness of medical management was found to be consistent for all patients. Eighty-two percent of patients elected for oncologic-based treatment, 5% pursued active surveillance, and 11% did not receive treatment. Seventy-three percent of patients were referred to palliative care. Fifty-six percent of patients had a full goals-of-care conversation documented; yet only 9% of goals-of-care conversations were documented by an oncologist. Prognosis was documented fully for only 22% of patients. At the end of the study period, 43 patients were deceased (52%), further indicating the critical importance of documentation. Conclusions: Within our integrated health system, we found consistent guideline- and patient-directed diagnosis and management, along with frequent integration of palliative care services. Goals-of-care conversation and prognosis documentation, especially by the oncologist, remains an area of needed improvement.

Background: Palliative care and rehabilitation professionals caring for seriously ill people and their families face barriers to effective, timely collaboration. Barriers such as ineffective communication processes, role misunderstanding across professions, and resource limitations can lead to underutilization of rehabilitation services for this vulnerable population. Objectives: To create practical connections between palliative care and rehabilitation professionals and to provide tools and strategies for teams to develop the core competencies (role clarity, communication, teamwork, and shared values) necessary to provide coordinated, timely, effective care to people living with serious illness. Design: With Interprofessional Education Collaborative (IPEC) Core Competencies1 as a framework for interprofessional collaborative practice, a quality improvement project was conducted at a large academic medical center. The 5-phase project included literature review, expert interviews, identification of barriers and facilitators, development of strategies to mitigate barriers, and pilot testing of select strategies. Results: The PalRehab Toolkit consists of strategies to enhance interprofessional collaborative practice and infuse rehabilitation into palliative care in the acute care setting. Preliminary evaluation of piloted strategies suggests increased communication across professions, improved role clarity, and an increased likelihood of collaboration. Conclusion: Providing educational offerings, establishing efficient communication channels, and infusing rehabilitation concepts into palliative care practices, as outlined in the PalRehab Toolkit, may positively impact interprofessional collaborative practice and improve care delivery for people with serious illness and their families.

Background: Hospice care is an underused form of intervention at the end of life. The experiences of patients, families, and other caregivers are important to consider in thinking about how to encourage greater use of hospice care, through policies and advocacy that promote its benefits. Specifically, patient, family, and other caregiver satisfaction with hospice care is important to understand better. Methods: A PRISMA-guided review of the research on hospice care satisfaction and its correlates among patients, families, and other caregivers. Included in the review is research published over the time period 2000-2023 identifying a hospice care satisfaction finding. Results: Thirty-eight studies were included in the review. Key findings were: (a) higher levels of hospice care satisfaction among patients, families, and other caregivers; and (b) correlates of hospice care satisfaction falling into the categories of communication, comfort, and support. The published literature had fewer findings related to demographic correlates of satisfaction such as age or race/ethnicity and was lacking in comparative research examining satisfaction across different types of hospice care settings. Discussion: Extant research demonstrates a consistently higher level of hospice care satisfaction among patients, families, and other caregivers. This satisfaction appears related to specific aspects of care delivery that involve effective care coordination and communication; pain and symptom management; and emotional support. Strengthening future research involves testing additional interventions aimed at enhancing satisfaction; including more comparative research across hospice care settings; and more studies that include patients as the key respondents.

Background: Current literature indicates low uptake of advance care planning (ACP) among the Chinese-speaking community in Australia. To increase the uptake of ACP among the Chinese-speaking community, a better understanding of their attitudes and perceptions on end-of-life (EOL) matters, and ACP is required.

Objective: This study aimed to identify significant events and social and cultural factors that influence participants' values and characterize the attitudes and perceptions towards ACP among older Chinese-speaking Australians.

Methods: A qualitative study explored participants' experiences through semi-structured one-to-one interviews. The interviews were conducted in Mandarin, Cantonese or English, then translated and transcribed into English. The transcripts were coded and analysed thematically.

Results: Twenty participants were recruited (14 female, six male). Participants typically reported a preference to make health-related decisions autonomously. Their perspectives were grounded in past experiences of illnesses and EOL decision-making of loved ones, personal values, and perceived needs. Family dynamics and intimacy of relationships appeared to influence the role and responsibility of family members in EOL decision-making and ACP. Most participants perceived the need to engage in ACP only when encountering significant health changes or higher care needs.

Conclusion: Healthcare professionals should initiate ACP discussion using culturally appropriate communication with consideration of personal values, past experiences and family dynamics. Efforts should be invested in raising public awareness of ACP within the Chinese-Australian community.

Effective doctor-patient-family communication is an integral and sensitive part of health care, assessing its quality is essential to identify aspects needing disclosure and, if necessary, improvement. Cross-sectional study aimed to analyze the sources of evidence of validity and the number of participants needed to reliably apply the Quality of Communication Questionnaire (QoC) through Generalizability Theory (GT). The mean age of the 150 patients hospitalized at the end of life was 50.5 (SD = 13.8) years, the mean hospital length of stay was 7.5 (SD = 10.2) days, 56.9% were male. Regarding the 105 patients' family members of patients whose mean length of hospital stay was 9.5 (SD = 9.1) days, their mean age was 42.2 (SD = 14.7) years, 69.5% were female. GT was used to quantify the minimum number of questionnaires needed, with the aim of reaching a reliable estimate of QoC with G-coefficients. To reach a reliability of .90, there is a need for 25 for the Eρ² questionnaires and 35 for the Φ. The exact estimation identified the minimum number of questionnaires required for the evaluation of physicians by patients. To obtain a reliability of .90, there is a need for 30 and 40 questionnaires for the G-coefficients. A practical and fast application makes it possible to use QoC in its entirety or alone to evaluate general communication or communication about palliative care. Furthermore, based on these results, it was possible to identify which aspects were effective or ineffective in these contexts.

Background: Stroke is a leading cause of death globally, yet End-of-Life (EOL) symptoms and their management in these patients are not well understood.

Purpose: This integrative review aims to critique and synthesize research on EOL symptoms and symptom management in adult patients with stroke in the last 2 years of life in all settings.

Methods: The Whittemore and Knafl integrative review methodology guided this review. PubMed, CINAHL, Scopus, Web of Science, and Google Scholar were used for the literature search. Included studies were published in English and quantitatively examined symptoms and symptom management. Quality appraisal was guided by the Effective Public Health Practice Project (EPHPP) assessment tool.

Results: Seven studies, all rated weak, were included in this review. A total of 2175 adult patients from six countries were represented. Results are classified into three main themes: EOL symptom experience, symptom assessment, and symptom management. Commonly reported EOL symptoms among adults with stroke include both stroke-specific (dysphagia, dysarthria) and non-specific symptoms (pain, dyspnea, constipation, and psychological distress). However, communication difficulties and the infrequent use of standardized tools for symptom assessment limit what is known about the EOL symptom experience. Although the relief of pain is generally well-documented, dyspnea and anxiety are much more poorly controlled.

Conclusions: There is a need for better assessment and management of EOL symptoms in patients with stroke. Established palliative and EOL care guidelines need to be incorporated into clinical practice to ensure access to high-quality care.