The American journal of hospice & palliative care最新文献

ObjectiveReview the current teaching methods, curricula, and assessment tools for pediatric palliative care (PPC) within the pediatric s intensive care setting for pediatric critical care medicine (PCCM) trainees as it pertains to the following domains: (1) Symptom management, (2) Communication, (3) Spiritual/Psychosocial, (4) End of Life (EOL).Data SourcesPubMed, Cochrane CENTRAL, EMBASE, and PsycINFO were searched for articles reporting on PPC educational curricula or interventions for residents and fellows in pediatric intensive care settings. The search strategy used a combination of MeSH terms and keywords to search for items that addressed intensive care, pediatrics, palliative care, residents or fellows, and education.Study SelectionCurricula that includes PCCM trainees (fellows and residents) nationally and internationally.Data ExtractionCovidence.Data SynthesisOf 105 articles reviewed, 6 articles addressed PPC education in the PICU between 2015 and 2025. All 6 articles were United States-based and included simulation curricula focused on communication regarding EOL care. Evaluation tools varied across articles. There is a paucity of data around complex symptom management, communication on topics other than EOL, and spiritual and psychosocial education.ConclusionsSimulation focused on communication and EOL care is frequently used to teach PPC knowledge and skills to PCCM fellows and residents. Currently varied evaluation methods exist with limited PPC domains. This review highlights the need for future PPC curricula development for PCCM trainees.

BackgroundPalliative care in community settings can support seriously ill individuals to reduce symptoms and maintain quality of life. However, many individuals decline palliative care, even when they have health concerns. Differences in understanding how palliative care can help manage serious illness may contribute to declining.ObjectiveThis study explores the relationship between individuals' understanding of palliative care, their health concerns, and education levels (a proxy for health literacy).MethodsWe use survey responses from a validated instrument assessing palliative care knowledge and information from semi-structured interviews for 21 seriously ill individuals (n = 3) and family caregivers (n = 18) who were eligible for community-based palliative care services and declined. We explore the relationship between respondents' education, understanding of palliative care, and their concerns about their or their loved one's health.ResultsAmong participants, twelve had a bachelor's degree or more; nine had some college or less. Six participants with some college or less expressed concerned about stress from serious illness. Of these, half (n = 3) did not understand palliative care could help. Conversely, five participants with a bachelor's degree concerned about stress understood palliative care could help. Seven participants with some college or less expressed concerned about medication side effects; four did not understand palliative care could help. Conversely, three participants with a bachelor's degree concerned about medication knew that palliative care could help.ConclusionAssessing health concerns and explaining how palliative care can address those concerns may reduce barriers to accepting palliative care, particularly among individuals with lower levels of education.

IntroductionCaring for chronically or terminally ill individuals comes with unique challenges and circumstances that are specific to each situation and individual involved. Studies on caregiving have often concentrated on the negative physical and emotional impacts on caregivers, while more recent literature depicts a more complex and multidimensional experience. The purpose of the current study was to better elucidate the scope of challenges and benefits attributed to caring for a loved one with a serious, life-limiting illness.MethodsA total of 18 informal family caregivers were enrolled in this study, which used a semi-structured interview format. Interviews were conducted at the participants' place of residence, all within New York State (United States of America). All interviews were audio-recorded, transcribed, and analyzed using inductive thematic analysis with consensual qualitative research components. The qualitative analysis team was comprised of three core members and one outside auditor.ResultsFour main themes emerged: (1) Burdens on the Caregiver, (2) Navigating Caregiving, (3) The Positives, and (4) Evolution of Relationships. Additionally, the latent theme of Cognitive Dissonance was identified across interviews.DiscussionFindings suggest that family caregivers of individuals with terminal or life-limiting illness experience complex, and often contradictory feelings, which may differ from perceptions by those not providing similar care to a loved one. The data suggest that clinicians working with the caregiving population should explore the duality of caregiving beyond just the anticipated negative impacts.

ObjectivesAs the number of physician associates (PAs) in hospice and palliative medicine (HPM), understanding their professional needs is vital. This exploratory study (n = 49) aimed to identify factors to inform strategic initiatives for the Physician Associates in Hospice and Palliative Medicine (PAHPM) organization.MethodsThis descriptive, cross-sectional study utilized a 17-question survey distributed in December 2024 to PAs via PAHPM and social media. Data included demographics, training, and open-ended questions regarding professional obstacles. Qualitative data were analyzed via thematic analysis.ResultsRespondents were primarily female (89.8%) and hospital-based (57.1%), with 73.5% less than or equal to 10 years of experience in the specialty. While 55.1% had specialized training, only 16.3% were specialty certified. Qualitative analysis identified five challenges: regulatory and policy hurdles, workforce disparities compared to other APPs, misconceptions about the PA role, education gaps, and emotional strain.ConclusionThese preliminary findings suggest a need for targeted organizational support in advocacy, particularly regarding legislative efforts for hospice inclusive, and professional development to bridge the certification gap.

Objectives: In Italy a recent law was approved for providing patients' wishes regarding end of life issues, commonly referred internationally to as "living wills", (Dichiarazione anticipata di trattamento, DAT). Regardless of this official document, advance care planning (ACP) is often used in a palliative care setting to share the treatments to start, to continue, to withdraw, thus preventing the stress on an acute decision. The aim of this study was to assess DAT and ACP in patients with amyotropic lateral sclerosis admitted to home palliative care. Methods: Patients consecutively admitted to speciliazed home palliative care were prospectively assessed. The presence of DAT or ACP was recorded. Results: Sixty-eight patients were enrolled in the period taken into consideration. No patient had drown up DAT, and only one patient provided his ACP prior to home palliative care admission. Along the course of home palliative care care assistance, 30.9% of patients provided their ACP. Discussion: In Italy DAT resulted scarcely widespread, despite an existing law, as no patient officially provided their indication on end of life issues. In addition, ACP was given only after starting specialized home palliative care in less than 1/3 of patients. Home palliative care seems to be a fundamental resource for improving communication and soliciting expression of patients' wishes regarding end of life issues.

Objectives: Anticipatory grief is associated with post-bereavement grief; however, reports on the influence of pre-loss depression are limited. Therefore, we investigated the association between the anticipatory grief of family members and post-loss and post-depression grief adjusted for pre-loss depression. Methods: This cohort study included the family members of dying patients with cancer. Questionnaires were distributed to them during hospitalization in four inpatient palliative care units from 2016 to 2017. We also administered follow-up questionnaires after their bereavement in 2018. The pre-bereavement questionnaire consisted of three items from the Anticipatory Grief Scale for Families Caring for a Terminally Ill Person for assessing anticipated grief and the Patient Health Questionnaire 9 for assessing depression. The Brief Grief Questionnaire was used to assess post-loss grief. Results: We distributed 181 pre-bereavement questionnaires to the family members; 112 (62%) responded to the pre-bereavement survey, out of which 71 (63%) responded to the post-bereavement survey. Anticipatory grief was significantly associated with pre-loss (ρ = 0.37, ρ < 0.001) and post-loss (ρ = 0.24, P = 0.009) depression and marginally associated with post-loss grief (ρ = 0.15, P = 0.10). Pre-loss depression was also significantly associated with post-loss depression (ρ = 0.50, P < 0.001) and post-loss grief (ρ = 0.41, P < 0.001). However, anticipatory grief was not significantly associated with post-loss depression (P = 0.35) and post-loss grief (P = 0.65) after adjusting for pre-loss depression. Significance of Results: Bereaved families who experienced anticipatory grief had worse post-bereavement depression. However, this association was not statistically significant after adjusting for pre-bereavement depression. Post-bereavement depression may be in a continuum with pre-loss depression, and anticipatory grief does not independently affect post-loss reactions.

Background: Antipsychotics and benzodiazepines are prescribed for hyperactive delirium despite their side effects and lack of supportive evidence. Valproic Acid (VPA) improves agitation without QTc prolongation, excessive sedation, and parkinsonism. However, high quality evidence for this is lacking in delirium. Methods: This retrospective study involved hospitalized patients seen by Palliative medicine from 10/1/2019 to 4/17/2020 who received VPA for at least 24 hours for hyperactive delirium. Patients were excluded if VPA was used for seizures or bipolar disorder. We hypothesized that VPA improves agitation and thus reduces the use of opioids, antipsychotics, and benzodiazepines. Results: Twenty patients, 50% women, and a median age of 81.5 years were treated. Nine had cancer, five dementia and two had strokes. The median daily VPA dose was 831.6 mg (IQR 671.4 -1016.4). Due to the small numbers, we did not find a statistically significant differences in benzodiazepine, opioid, or antipsychotic use on days 1, 2, or 3. VPA was used as monotherapy in 10 patients, with no additional antipsychotic or benzodiazepines needed. Eleven patients were on comfort care measures at the time of VPA initiation. Ten died in the hospital. Three were discharged home, and seven transferred to a skilled nursing facility. Discussion: This study explored the use of VPA in palliative care. VPA may be effective in treating aggitation. Randomized controlled trials are needed to validate VPA benefits in treating agitated delirium.

Orthodox Jewish patients with terminal illnesses have unique goals and desires, often driven by halakha (Jewish law and ethics) and cultural norms. We conducted a quality improvement project investigating the baseline perceptions and experiences of medical professionals who care for Orthodox Jewish patients with terminal illnesses. The survey included health care professionals who cared for Orthodox Jewish patients as part of Intensive Care Unit (ICU), Oncology, or Palliative Care and Hospice teams. The three main elements of the survey included respondent demographics, multiple choice selections, and a free-text section. A total of 73 medical professionals responded to the survey. Several important findings were noted. Compared to the general population, Orthodox Jewish patients with terminal illnesses are more likely to request aggressive measures at end-of-life and are less likely to have completed advanced directives and health care power of attorney documentation. They also do not always have a rabbinic authority involved in decision-making. Health care professionals highlighted strong religious and community support as positive elements of caring for this population and recommend that medical teams establish early and direct communication with rabbinic authorities for those patients for whom a rabbi's involvement is desired. These data inform ongoing next steps to improve the quality of care for these patients and their families.

There is an emerging need to provide high-quality pediatric palliative care and end-of-life care to children, adolescents, and young adults with life-limiting illnesses. Currently, there are no standardized quality measures supporting pediatric palliative care and end-of-life care patient outcomes. The aim of this literature review was to explore current quality measures utilized in pediatric palliative care and end-of-life care among pediatric patients with life-limiting illnesses within the conceptual framework of Comfort Theory. A comprehensive review of relevant articles resulted in 15 articles that met criteria and were evaluated. Included studies focused on pediatric patients with life-limiting illnesses receiving palliative care or end-of-life care. Articles related to children with acute illness, trauma, or accidental death were excluded. Emergent themes among quality measures were categorized into 7 domains: (a) Alleviation of distressing symptoms, (b) Structures and processes of care, (c) Health care utilization, (d) Location of death and bereavement care, (e) Patient and family experiences, (f) Psychological and spiritual care, and (g) Cultural, ethical, and legal considerations. These domains support the physical, psychospiritual, sociocultural, and environmental contexts of Comfort Theory. Quality measure research, development, and standardization should focus within the 7 domains identified for the promotion of comfort, equity, and accessible care.

Background: Patients who experience homelessness manifest poor cancer outcomes, often because of treatment delays. Few studies have used mixed methods to learn what happens at the patient and health care staff level to explain these delays. Methods: This single-institution, multi-site study interrogated the entire medical record system (thousands of patients annually) for homelessness and cancer diagnoses from January 1, 2019, through October 10, 2023. Records were abstracted for relevant quantitative and qualitative data; rigorous methods were used to analyze, integrate, and report findings. Results: Forty-three patients with a median age of 58 years (range: 32, 73 years) and 34 (79%) assigned male sex at birth are the focus of this report. The most common cancers include hematologic (n = 8), gastrointestinal (n = 8), and genitourinary (n = 8). Thirty-five patients (81%) initiated cancer therapy, and 27 (63%) manifested treatment delay (>4 weeks post-diagnosis). The median time to cancer therapy was 9 weeks (95% confidence interval: 4.6, 12 weeks). Qualitative themes that explain delays are as follows: (1) logistical challenges in communication between the patient and health care team ("lack of a cell phone"); (2) patient reluctance to receive care ("patient elected to leave Against Medical Advice"); and (3) medical challenges in providing care ("he was hospitalized after being found down and hypotensive"). Conclusions: This study confirms that initiation of cancer therapy is often delayed in patients who experience homelessness. It sheds light on reasons for delay - for example, lack of phone access, an observation which suggests that perhaps provision of a burner phone might help some patients.