The American journal of hospice & palliative care最新文献

Background: Palliative care is subject to substantial variations in care, which may be shaped through adapting the organisational structures through which care is provided. Whilst the goal of these structures is to improve patient care, there is a lack of evidence regarding their effect on care processes and patient outcomes. Aims: This study aims to describe the relationship between care structures and the quantity and domains of care processes in hospice care. Design: Retrospective cohort study. Settings/Participants: Data were collected from Dutch hospice patient's clinical records and hospice surveys, detailing hospice structures, patient clinical characteristics and care processes. Results: 662 patients were included from 42 hospices, mean age 76.1 years. Hospices were categorised according to their care structures - structured clinical documentation and multidisciplinary meetings. Patients receiving care in hospices with structured multidisciplinary meetings had an increased quantity of documented care processes per patient on admission through identification (median 4 vs 3, P < .001), medication (2 vs 1, P = .004) and non-medication (1 vs 0, P < .001) interventions, monitoring (2 vs 1, P < .001) and evaluation (0 vs 0, P = .014), and prior to death. Similar increases were identified for patients who received care in hospices with structured documentation upon admission, but these changes were not consistent prior to death. Conclusions: This study details that the care structures of documentation and multidisciplinary meetings are associated with increased quantity and breadth of documentation of care processes in hospice care. Employing these existing structures may result in improvements in the documentation of patient care processes, and thus better communication around patient care.

Narrative care for families suffering from perinatal loss is rarely provided by medical institutions in China Mainland. However, with the advancement of the Chinese narrative medicine theory and practice, the clinical significance of narrative care has been increasingly recognized. Based on the principles of Chinese narrative medicine, this narrative case study described traumatic narrative foreclosures occuring in a family suffering from stillbirth, and highlighted the multidisciplinary collaboration for practising narrative care in the process of supporting the bereaved in our hospital. Meanwhile, we advocate the establishment of a narrative care ecology by training more obsteticians and nurses with good narrative competence in purpose of helping the family experiencing perinatal losses to overcome their tramatic narrative foreclosures, increasing the chances of another successful pregnancy and childbirth as well as enhancing their quality of life.

Background: Over the past two decades, pain and suffering caused by the U.S. opioid crisis have resulted in significant morbidity, policy reforms and healthcare resource strain, and affected healthcare providers' efforts to manage their patients' pain. In 2017, Cleveland Clinic's Department of Palliative and Supportive Care established their Opioid Management Review Committee (OMRC), which focuses on patient safety, opioid stewardship, education on specialist pain management and addiction medicine skills, and offers emotional and informational support to colleagues managing complex pain cases.

Objectives: This quality assessment and improvement activity describes the organization and effects of the OMRC on healthcare workers in the department.

Methods: On February 1, 2023, an online survey was distributed to attendees of the OMRC. Participants were asked to provide their demographic information and free text responses to questions about the purpose of the OMRC, their judgment about the extent to which the OMRC has changed their approach to pain management, the OMRC's impact on their approach to opioid management, its impact on the clinicians' confidence in managing nonmedical opioid use or comorbid substance use, and suggestions to improve future meetings.

Results: Fifty-nine out of 79 clinicians completed the survey (75% response rate). Participants' aggregate responses indicated that the committee fostered interdisciplinary collaboration, provided emotional and professional support, increased awareness of responsible opioid prescribing, and enhanced confidence in managing complex cases involving non-medical opioid use or comorbid substance use.

Conclusion: The OMRC represents a comprehensive interdisciplinary approach to safely manage opioid therapy during the contemporary opioid overdose crisis.

Context: Home hospice needs assessment is the key to the development of home hospice services. Therefore, there is a need to develop assessment tools in mainland China to meet the comprehensive needs of the old adult at the end of life. Objective: To develop and validate a tool to assess Chinese mainland palliative care needs of the dying old adult at home. Methods: Using the Harmony Nursing Theory as a theoretical framework, through reference to the China home hospice care needs scale, literature research, in-depth conversations with the dying old adult, and group discussions among members of the research team, 43 original questionnaire items were preliminarily drafted. A 31-item predictive questionnaire was formed through 2 rounds of expert review and small sample testing. From April to September 2023, 199 old adult at the end of life at home in Jinzhou, Liaoning Province were investigated to determine the reliability and validity of the questionnaire. Results: The final questionnaire included 31 items. Exploratory factor analysis extracted 5 common factors, and the cumulative variance contribution rate was 68.811%; the Cronbach's alpha coefficient of the total questionnaire was 0.832, and the re-test reliability was .806; the content validity index of the questionnaire was 0.982, and the content validity index of the items was 0.83-1.00. Conclusion: The construction method of the HHCNQ-DE is scientific and reliable, with good reliability and validity, and it can be used as a tool to measure the needs of home hospice care in mainland China in the future.

Background: This study sought to investigate the symptoms and prognoses of patients with breast cancer and malignant wounds in the palliative care unit setting.

Methods: This study was a sub-group analysis of a multicenter, prospective, observational study. Patients admitted to 23 palliative care units in Japan between January and December 2017 were enrolled. Data of patients with breast cancer were extracted. We compared demographic characteristics, symptoms, and prognoses by breast cancer malignant wound status. The primary outcome was overall survival. Secondary outcomes included Palliative Prognostic Index (PPI) score, malignant wound characteristics, and symptom burden.

Results: Of 1896 patients, 131 (6.9%) had breast cancer. In this cohort, 44 (33.6%) patients had malignant wounds. Most malignant wounds (88%) were on the back and chest. Malignant wounds were associated with skin redness, erosion, necrosis, or fistula. Symptoms included bleeding, exudate, odor, and pain. Twenty-eight patients (63.6%) needed dressing changes and 14 (31.8%) patients experienced bleeding. None died due to bleeding. In the malignant wounds group, 32 (72.8%) patients had used an opioid dose equivalent to 38 mg of oral morphine daily, compared to 25 mg by 57 (65.5%) patients in the non-malignant wounds group (P = .26). Median PPI scores at hospital admission were 4.5 vs 6.5 (P = .08). Median survival was 23 vs 21 days (P = .48).

Conclusions: Patients with malignant wounds had a distinct symptom burden profile and tended to use a higher dose of opioids. The effect of malignant wounds on survival was unclear.

Background: The End-of-life Care Nursing Education Consortium (ELNEC) program aims to equip nurses with knowledge and skills in palliative and end-of-life care. While this program improves knowledge and attitudes of Indian nurses regarding palliative care and end-of-life care, its long-term impact on their knowledge, attitude, and clinical practice remains unknown. This study aims to assess ELNEC's long-term impact on knowledge, attitude, and practice of Indian nurses. Methods: A 18-month follow-up survey of practicing nurses at a tertiary care institute who completed ELNEC in September 2021. Data was collected between April-June 2023 via a questionnaire covering demographics, Palliative Care Quiz for Nurses (PCQN), Frommelt Attitude Toward Care of the Dying Scale Form B (FATCOD-B) and a clinical practice questionnaire developed and validated to access impact of ELNEC on clinical practice. Quantitative and qualitative data were assessed using Statistical package for social sciences and thematic analysis respectively. The 18-month follow-up PCQN and FATCOD-B scores were compared with the pre-ELNEC (baseline) and immediate post-ELNEC scores. Results: Out of 108 nurses, 69 responded with a response rate of 63.8%. The mean follow-up PCQN score was 9.03 ± 2.58; significantly higher than the pre-ELNEC (8.45 ± 1.88) but lower than the immediate post-ELNEC scores (10.2 ± 1.88). Attitudes toward end-of-life care declined over time but remained positive in the end-of-life care value and care of the dying. Thematic analysis of responses to open questions revealed that ELNEC motivated nurses to work in palliative care and care for patients with chronic life-limiting illnesses (n = 52, 75.3%), improved their nursing practice (n = 60, 86.9%), and helped enhance their communication skills (n = 51, 73.9%). Participants (n = 55, 79.7%) emphasized on regular palliative care training to reinforce their knowledge and skills. Conclusion: Compared with baseline, ELNEC leads to long-term improvement in practicing nurses' palliative care knowledge, clinical practice, communication skills and motivates them to work in palliative care.

Objective: Palliative care consultation is relevant for patients requiring Venous-Arterial Extracorporeal Membrane Oxygenation (VA-ECMO); however, evidence is limited to support its value. For this population, we compared length of stay (LOS) (primary outcome), operational metrics and goals of care (GOC) frequency before and after a collaboration between cardiothoracic (CT) surgery and Geriatrics and Palliative Medicine (GaP).

Methods: Retrospective chart review of patients (18+) admitted to a quaternary center that required VA-ECMO between 2019-2021 and received GaP consultation. Demographics, LOS, times to consult, illness severity, GOC, and outcomes were analyzed.

Results: 120 patients met inclusion criteria and 64 (53.3%) had GaP consultation. No differences were observed regarding demographics and insertion status (emergent vs elective). Median (IQR) days to GaP consult for 2019, 2020 and 2021 were 6.5 (4.0-14.5), 5.0 (2.0-11.0) and 3.0 (2.0-5.0), respectively (P = .006). Median days from insertion to consult for 2019, 2020 and 2021 were 6.0 (4.0-20.0), 3.0 (1.0-6.0) and 2.0 (1.0-4.0) (P = .003). Among survivors, over the 3-year course, median LOS was not statistically different. Between expired patients, median (IQR) LOS for 2019, 2020, and 2021 was 28.5 (23.0-40.0), 12.0 (8.0-14.0), 11.0 (5.0-17.0) days (P = .013). For patients not seen by GaP, 8 (14.3%) GOC notes were documented, compared with 42 (65.6%) for patients seen. Mortality was similar (53.6% vs 53.1% [GaP]).

Conclusion: For patient on VA-ECMO, early GaP consultation may improve hospital LOS and GOC rates. We suggest organizations consider early palliative integration when instituting mechanical circulatory support.

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.

Indigenous American (I.A.) individuals with serious illness and their families have unmet needs. Often, this group is viewed as a minority within a minority. Numerous health challenges exist within the I.A. populations resulting in dire health care situations. Historical trauma and mistrust of the healthcare system impacts access to quality palliative care by this marginalized population. Given the range of social, spiritual, and cultural issues, the interprofessional team needs increased knowledge specific to the I.A. population to ensure holistic, culturally sensitive care. Utilizing a case study, this article reviews of the needs of I.A. individuals with serious illness and essential skills. The aim is empower palliative care clinicians the knowledge to provide culturally sensitive and congruent care to I.A. individuals with serious illness and their community.

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.