Annals of palliative medicine最新文献

Persons with mental disorders have the same right to self-determination as patients with somatic diseases, also regarding death and dying. However, there are several challenges that render persons with mental disorders especially vulnerable to inappropriate conduct of assisted suicide: their wish to die may be a symptom of their mental disease and not an autonomous choice, decision-making competence may be compromised by their illness and more difficult to assess, the severity of suffering may be more difficult to evaluate from an external perspective, the wish to die may be more variable over time and the prognostic uncertainty in mental illness makes it more difficult to determine whether the severe suffering is, in fact, treatment-resistant. After reviewing the clinical and ethical background of assisted suicide in persons with mental disorders, we assess each of these challenges to a medically and ethically justified practice of assisted suicide in mentally ill persons, based on relevant clinical and ethical literature. We conclude that the only ethically valid argument to exclude persons with mental disorders from suicide assistance is their potential inability to make a free, autonomous decision. However, the mentioned challenges should be taken into account in evaluating a person's request for assisted suicide and for promoting her well-informed and deliberated decision-making. In addition to assessing the person's decision-making capacity, the evaluation process should be guided by the goal to empower the person to make an autonomous choice between the available options. We conclude the paper with perspectives for a clinically and ethically justified practice of evaluating requests for assisted suicide in persons with mental disorders.

Background: The suffering experienced by terminally-ill patients encompasses physiological, psychosocial and spiritual dimensions. While previous studies have investigated symptom burden intensity for specific disease groups, such as cancer or heart failure patients, a research gap exists in understanding major distressing symptoms among diverse terminally-ill patients. This study assessed symptom burden intensity and explored its influential factors among diverse patient disease groups.

Methods: This cross-sectional study utilized the baseline Integrated Palliative care Outcome Scale (IPOS) assessment data. The study participants were terminally-ill patients enrolled in an end-of-life care (EoLC) intervention in Hong Kong. Statistical methods including relative importance index (RII), one-way analysis of variance (ANOVA), and generalized linear regression (GLR) were employed.

Results: Final sample consisted of 1,549 terminally-ill patients (mean age =77.4 years, SD =11.6). The five top-rated distressing symptoms among these patients, revealed by the RII analysis, were poor mobility (RII =64.4%), family anxiety (RII =63.5%), sharing feelings with family/friends (RII =61.4%), weakness/lack of energy (RII =58.1%), and hardly feeling at peace (RII =50.7%). One-way ANOVA showed significant differences among the eight disease groups in perceived physical and emotional symptom burden intensity (P<0.05). Analysis of RII symptom scores for each disease group revealed that poor mobility was rated as the most distressing symptom (RII =85.1-62.9%) by patients with motor neurone disease, Parkinson's disease, heart failure, dementia, end-stage renal disease and other serious diseases (including stroke, hematological disease, multiple sclerosis and liver diseases). Perceived family anxiety (RII =66.1%) and shortness of breath (RII =63.8%) were the most distressing symptoms for cancer patients and those with chronic obstructive pulmonary disease, respectively. GLR analysis showed that illness type is the most significant factor influencing the perceived burden intensity in terms of the IPOS total and subscale scores of physical symptoms, emotional symptoms and communication/practical issues. Demographic characteristics such as age, gender, marital status and co-residing status were also identified as influential factors of various symptom categories. However, patients' educational level and relationship with primary caregiver did not significantly influence any perceived symptom burden.

Conclusions: This study provides valuable insights into the symptom burdens experienced by diverse patient disease groups at end-stage of life. The findings highlight the major distressing symptoms of poor mobility, family anxiety, and shortness of breath. Addressing these symptoms is crucial in improving the quality of care for terminally-ill patients. Furthermore, the study identifies infl

Background and objective: Left ventricular assist devices (LVADs) have revolutionized the care of patients with advanced heart failure (HF). Compared to guideline-directed medical and device therapies, LVAD technology improves quality of life and reduces mortality. Palliative care specialists have an important role to play in the pre-LVAD evaluation phase, in the post-operative longitudinal care phase, and at the end-of-life in patients with LVADs. The objective of this narrative review is to describe the evidence regarding the role of palliative care for patients with LVAD across the care continuum: pre-implantation, post-implantation, and at the end-of-life.

Methods: Clinical trials relevant to care of patients with HF, LVADs, and the role of palliative care were analyzed for this narrative review.

Key content and findings: Palliative care involvement in 'preparedness planning' has been described in the literature, though no standardized protocol for preparedness planning exists, to date. In the longitudinal care phase after LVAD implantation, the role of palliative care is less defined; depending on institutional culture and availability of palliative care, patients may be referred based on symptom-management needs or for advance care planning (ACP). At the end-of-life, either due to an acute event or a gradually worsening condition, palliative care is often engaged to participate in discussions regarding treatment preferences and to consider transitions in care from disease-directed treatments to comfort-focused treatments. Given the medical complexity of dying with LVADs, most patients with an LVAD die in hospital with support from palliative care teams for the physical, existential, and psychosocial distress that accompanies end-of-life and LVAD deactivation.

Conclusions: In this narrative review, we describe the integral role of palliative care throughout the care continuum of patients living with LVADs and suggest opportunities for further research.

Background and objective: Gastroesophageal junction (GEJ) cancer is a highly morbid disease with a poor prognosis. While uncommon in the United States, globally it is ranked as the sixth or seventh most common cancer depending on survey tool. GEJ cancer presents a unique and challenging symptom profile for patients at all disease stages, regardless of histology. Even patients with early stage disease experience debilitating cancer-related symptoms and treatment side effects. The heavy symptom burden associated with this disease includes dysphagia, nausea and vomiting, pain, anxiety, depression and malnutrition. These symptoms require a multidisciplinary approach involving local therapies including radiation and stent placement, systemic cancer-directed therapy, nutritional support, and supportive medical management. This review aims to examine the unique symptom burden experienced by patients with GEJ cancer and provide an updated overview of symptom management techniques.

Methods: A PubMed search was conducted using the terms "gastroesophageal junction cancer AND palliative care". Articles published from 2008 to 2022 with a primary focus on supportive care for patients with GEJ cancers were reviewed.

Key content and findings: A total of 119 articles were identified and screened in our database search. Of these, 22 full text articles met inclusion criteria and were reviewed. Seventeen articles addressed technical interventions for the alleviation of dysphagia, 1 article focused on nutrition, 1 article described the impact of multidisciplinary tumor boards, 1 article presented the effect of home nurse visits, 1 article described the use of antiemetics, and 1 article was a narrative review of supportive care.

Conclusions: In this narrative review, we examine specific supportive care needs in the GEJ cancer population. While the predominant symptom addressed in the literature is dysphagia, patients with GEJ cancer carry a complex symptom burden from diagnosis, through cancer-directed therapy to end-of-life care. Early referral to specialty palliative care should be considered for all patients with GEJ cancer to foster symptom management and delivery of goal concordant care.

Background: Current literature highlights the need for psychological support of adolescents and young adults (AYAs) with serious illness, for which pediatric palliative care (PPC) teams are often responsible. This scoping review aims to inventory the most current literature based on discipline, geography, population, methodology, and themes among interdisciplinary PPC teams and the management of psychological distress in AYAs.

Methods: Using a scoping review design, a protocol was registered in Open Science Framework (https://osf.io/fb48n/). Sources for evidence included online databases (Scopus, PubMed, Embase, PsycInfo, CINAHL), Google Scholar, clinical manuals, texts, national organization webpages, and reference lists, all searched June, 2023. Interviews with content experts and authors identified additional sources. Those describing interdisciplinary palliative care (PC) and management of psychological/psychiatric distress in seriously ill AYAs, written in English, and completed in the U.S. between 2018-2023 were included. International citations were included if American literature was reviewed, or if authors described internationally developed PC standards by which American providers must practice. Clear and comprehensive data charting was completed by an independent reviewer, using a deductive approach with a standardized data-charting form developed prior to extraction.

Results: Sixty-five references met inclusion criteria. Psychologists most frequently published in the past 5 years regarding integration of their care into palliative teams. Authors wrote from eastern U.S., qualitatively studying the PC team in the oncology space. Of eight themes identified, barriers, facilitators, and interventions were most frequently reported.

Conclusions: Role delineation among PPC teams can be difficult in the management of psychological distress, due to lack of training and consistent collaboration models among cancer and non-cancer populations. Current literature highlights a large gap in psychological/psychiatric training. However, optimized pain control, routine screening of distress, open/honest/developmentally appropriate communication, and early advance care planning are interventions by which palliative providers can begin managing psychological distress in seriously ill AYAs. While the presence of psychologists and psychiatrists is widely variable among PPC teams, their expertise can vastly advance the field of PC, through collaboration, education, research, and advocacy.