Palliative medicine reports最新文献

Background: Some studies suggest that individuals having lost a loved one during the COVID-19 pandemic report higher levels of grief reactions than people bereaved from natural causes. Little is known about the lived and subjective experience of individuals who lost a loved one under confinement measures.

Aim: This research aims to provide a phenomenological description of pandemic grief (PG) that can be useful in clinical settings and bereavement services.

Methods: Seventy-six qualitative phenomenological interviews have been conducted with 37 individuals who have lost a loved one during the first wave of the pandemic. Interpretative phenomenological analysis was performed following Tracy's criteria for rigorous qualitative research.

Results: The experience of PG comprises clinical manifestations and can be described as "a type of grief occurring in the context of a pandemic, where applicable public health measures have precedence over end of life and caregiving practices as well as funeral rituals, overshadowing the needs, values, and wishes of the dying individuals and those who grieve them."

Discussion/conclusion: This study is the first to provide a phenomenological and experiential understanding of PG. Our phenomenological description can be helpful in clinical settings such as bereavement services within palliative care teams.

Background and objectives: Values of religion, spirituality, and faith (RSF) are central to decision making for many parents facing extremely preterm labor or prenatal diagnoses of potentially life-limiting congenital anomalies. Neonatologists' opinions and comfort with discussing parental RSF are not well known. We sought to understand neonatologists' current practices and perceptions of exploring parental RSF in prenatal consultations.

Methods: A retrospective chart review was performed at a single U.S. academic institution to evaluate the inclusion of spiritual terminology in documentation. All mothers who were admitted with anticipated extremely preterm delivery as well as those with prenatal diagnoses of potentially life-limiting congenital anomalies were included in analysis. After chart review, an anonymous survey was distributed to neonatology attendings and fellows to examine perspectives on exploring parental RSF.

Results: The chart review indicated that RSF terminology was absent from the documentation of all prenatal consultations performed by neonatology. Sixty-five percent of survey respondents considered RSF important in their personal lives and 47% considered RSF important in clinical practice. The three most significant barriers to exploring RSF were lack of training or education in spiritual care, differences between physicians' and patients' personal beliefs, and insufficient time.

Conclusions: Our study highlights a gap between the goal for prenatal counseling in cases of extreme prematurity and potentially life-limiting congenital anomalies and current practices that frequently exclude the values most important to many parents. Lack of training in spiritual care is a significant barrier to neonatologists exploring parental RSF.

Background: Patients with hematological malignancies (HMs) are reported to receive more aggressive care at the end of life (EOL) than patients with solid tumors. However, the reasons behind this occurrence are not fully understood.

Objectives: To examine whether the care at EOL for HMs is mainly because of the disease characteristics or hematologists' attitudes and systems of care, we compared the EOL care of patients with acute myeloid leukemia (AML) and diffuse large B cell lymphoma (DLBCL).

Design: We retrospectively analyzed the EOL care of patients with AML and DLBCL younger than 80 years who were receiving combination chemotherapy at a city hospital in Japan.

Results: Fifty-nine patients with AML and 65 with DLBCL were included. Those with AML received chemotherapy more often within their last 30 days (48% vs. 19%, p < 0.001) and 14 days (37% vs. 1.5%, p < 0.001) of life, and consulted the palliative team less frequently (5.3% vs. 29%, p < 0.001). In the last 3 years, the mortality rate in hematological wards decreased from 74% to 29% in the DLBCL group, but only from 95% to 90% in the AML group. In multivariate analysis, AML (odds ratio [OR] 0.065) and death before 2018 (OR, 0.077) were significant factors associated with reduced referrals to specialized palliative teams.

Conclusion: Patients with AML tend to have lesser access to specialized palliative care and fewer options for their place of death than those with DLBCL. Detailed EOL care plans are needed for these patients, considering the characteristics of the disease.

Background: Since 2015, the College of Family Physicians of Canada has certified enhanced skills in palliative care (PC) with a certificate of added competence.

Aim: This study aimed to describe the ways family physicians with enhanced skills in PC contribute within their communities, the factors that influence ways of practicing, and the perceived impacts.

Design: Secondary analysis of data from a multiple case study on the role and impacts of family physicians with enhanced skills (i.e., PC physicians) was undertaken.

Setting/participants: Interviews were conducted in 2018 to 2019 with PC and generalist family physicians and residents associated with six family medicine practice cases across Canada. An unconstrained qualitative content analysis was performed.

Results: Twenty-one participants (nine PC physicians, five generalist family physicians, two residents, and five physicians with enhanced skills in other domains) contributed data. PC physicians worked by enhancing their own family practice or as focused PC physicians. Roles included collaborating with other physicians through consultations, comanaging patients (shared care), or assuming care of the patient as the main provider (takeover). PC physicians increased capacity among their colleagues, with some patient care and education activities not being remunerated. Funding models and other structures were perceived as incentivizing the takeover model.

Conclusion: Family physicians with enhanced skills in PC contribute to comprehensive care through the end of life. Remuneration should support system capacity and relationships that enable family physicians to provide primary PC especially outside the takeover model.

Objective: With Huntington disease (HD), a fatal neurodegenerative disease where the prevalence of suicidal thoughts and behavior (STB) remains elevated as compared to other neurological disorders, it is unknown whether STB and health-related quality of life (HRQoL) affect plans for the end of life or more broadly, advance care planning (ACP). Conversely, it is unknown whether ACP would provoke future changes to STB and HRQoL. Therefore, we sought to evaluate whether STB and HRQoL patient-reported outcomes (PROs) contribute to ACP and whether ACP relates to changes in STB and HRQoL at 24 months.

Methods: HD-validated clinician- and patient-assessments (i.e., HRQoL PROs) were obtained at baseline enrollment, 12 and 24 months through our multi-center study (HDQLIFE™) throughout the United States among people with premanifest, early-stage, and late-stage manifest HD. We used linear mixed-effects models to determine the relationships between STB and HRQoL at baseline and HDQLIFE End of Life Planning at follow-up. Separate linear mixed-effects models were used to assess the relationship between HDQLIFE End of Life Planning at baseline, and HRQoL and STB at 12 and 24 months. False discovery rate adjustments were used to account for multiple comparisons.

Results: At baseline enrollment, STB and HRQoL were not related to HDQLIFE End of Life Planning at 12 or 24 months. Similarly, at baseline, HDQLIFE End of Life Planning demonstrated no association with STB or HRQoL at 12 or 24 months.

Interpretation: STB and HRQoL PROs do not significantly affect patient engagement with ACP. Most importantly, engaging in ACP does not cause untoward effects on HRQoL or STB for this rare neurodegenerative disease where the lifetime prevalence of STB approaches 30%.

Background: Social distancing during the COVID-19 pandemic limited how family, friends, and clinicians physically interacted with people who were dying and decreased communal opportunities for processing grief. These barriers can cause or exacerbate suffering due to loneliness while grieving.

Purpose: In this article, we describe the protocol for a brief storytelling intervention designed to reduce loneliness among families, friends, and clinicians grieving the death of a person during the time of COVID-19.

Methods: We trained four StoryListening doulas (SLDs) to hold a welcoming space and listen to stories with curiosity and openness. The intervention included a video StoryListening session and two brief questionnaires, filled out before and two weeks after the encounter, assessing loneliness and quality of life. During sessions, SLDs invited participants to share their story of loss in their own words and in as much detail as preferred. When participants felt a sense of story completion, SLDs shared validating statements and expressed gratitude to the participant for sharing. The video and audio for each participant's StoryListening encounter were recorded and the participant was offered an audio copy of their session.

Background: Few patients with chronic nonmalignant pulmonary diseases receive specialist palliative care consultation, despite their high symptom burden in end of life.

Objectives: To study palliative care decision making, survival, and hospital resource usage in patients with nonmalignant pulmonary diseases with or without a specialist palliative care consultation.

Methods: A retrospective chart review of all patients with a chronic nonmalignant pulmonary disease and a palliative care decision (palliative goal of therapy), who were treated in Tampere University Hospital, Finland, between January 1, 2018 and December 31, 2020.

Results: A total of 107 patients were included in the study, 62 (58%) had chronic obstructive pulmonary disease (COPD), and 43 (40%) interstitial lung disease (ILD). Median survival after palliative care decision was shorter in patients with ILD than in patients with COPD (59 vs. 213 days, p = 0.004). Involvement of a palliative care specialist in the decision making was not associated with the survival. Patients with COPD who received palliative care consultation visited less often emergency room (73% vs. 100%, p = 0.019) and spent fewer days in the hospital (7 vs. 18 days, p = 0.007) during the last year of life. When a palliative care specialist attended the decision making, the presence and opinions of the patients were recorded more often, and the patients were more frequently referred to a palliative care pathway.

Conclusions: Specialist palliative care consultation seems to enable better end-of-life care and supports shared decision making for patients with nonmalignant pulmonary diseases. Therefore, palliative care consultations should be utilized in nonmalignant pulmonary diseases preferably before the last days of life.

Background: Palliative chemotherapy is commonly used for advanced cancer patients. The timing of chemotherapy termination is crucial for efforts to maintain quality of life.

Patients and methods: This retrospective study included gastrointestinal cancer patients who were treated with chemotherapy and died between 2013 and 2022 at Niigata University Medical and Dental Hospital. Data were reviewed regarding age, gender, cancer type, reason for chemotherapy termination, cause of death, survival after chemotherapy termination, and place of death.

Results: In total, 388 patients were included; the median survival after chemotherapy was 73 days. Patients aged <67 years had shorter survival durations (59 days), compared with patients aged >67 years (82 days). Ten (2.6%) patients began a new chemotherapy regimen, whereas 17 (4.4%) patients received chemotherapy, within 4 weeks before death. The most common reason for chemotherapy termination was disease progression, and most deaths occurred in hospitals.

Conclusion: The rates of chemotherapy and initiation of new chemotherapeutic regimens near the end of life were lower than previously reported. Most deaths occurred in hospitals, highlighting the need for development of hospices.

Background: Physicians in acute care require tools to assist them in transitioning patients from a "life prolonging" approach to "end-of-life care," and standardized order sets can be a useful strategy. The end-of-life order set (EOLOS) was developed and implemented in the medical wards of a community academic hospital.

Objective: To compare adherence with best practices in end-of-life care after implementing the EOLOS.

Methods: We conducted a retrospective chart review of admitted patients with expected deaths in the year preceding EOLOS implementation ("before EOLOS" group), and in the 12 to 24 months following EOLOS implementation ("after EOLOS" group).

Results: A total of 295 charts were included: 139 (47%) in the "before EOLOS" group and 156 (53%) in the "after EOLOS" group, of which 117/156 charts (75%) had a completed EOLOS. The "after EOLOS" group demonstrated more "do not resuscitate" orders and more written communication to team members about comfort goals of care. There was a decrease in nonbeneficial interventions in the last 24 hours of life in the "after EOLOS" group: high-flow oxygen, intravenous antibiotics, and deep vein thrombosis/venous thromboembolism prophylaxis. The "after EOLOS" group demonstrated increased prescription of all common end-of-life medications, except for opioids, which had a high preexisting rate of prescription. Patients in the "after EOLOS" group showed a higher rate of spiritual care and palliative care consult team consultation.

Conclusion: Findings support standardized order sets as a good framework allowing generalist hospital staff to improve adherence to established palliative care principles and improve end-of-life care of hospital inpatients.