Annals of palliative medicine最新文献

Background: Time at home at end-of-life is perceived as valuable to individuals. Increasing home care is therefore often a political goal. Yet, little is known about where individuals live towards their end-of-life. Our aim was to describe where individuals reside their last 6 months of life in Finland and Norway, and how this differed by cause of death, sex, age, marital status, and income.

Methods: We used individual-leveled national registry data on all decedents aged >70 years in 2009-2013 to describe the number of days individuals spent at home, in hospital, in long-term care (LTC) and short-term care (STC) facilities. We described the place of residence for all and by causes of death: cancer, diseases of the circulatory system, disease in the respiratory system, and mental and behavioral disorders (primarily dementia). We analyzed how age, marital status (indicating informal care), and income associated with place of residence. Analyses were stratified by sex and country.

Results: During the last 6 months of life, decedents in Finland (n=186,017) and Norway (n=159,756) spent similar amounts of days in hospital (8 and 11 days) and in STC facilities (15 and 13 days). Finnish decedents spent more days at home (96 vs. 84 days) and fewer days in LTC facilities (64 vs. 80 days). Living arrangement differed similarly by cause of death in the two countries, e.g., decedents from cancer and mental and behavioral disorders spent 123 [113] vs. 29 [21] days at home in Finland (Norway). In both countries, for all causes of death, lower age and marital status were associated with more days at home, for both males and females. While those with higher income spent more days at home in Norway, the opposite was found in Finland.

Conclusions: Older individual's living arrangements in the last 6 months of life were similar in Finland and Norway but differed by cause of death. Younger individuals and those with access to informal care spent more days at home, compared to their counterparts. With aging populations, more individuals will likely need LTC at their end of life. Policies should align with these needs when developing future health care services.

Background: End-of-life (EOL) care is the part of palliative care intended for persons nearing death. In anorexia nervosa (AN), providing EOL care instead of coercing life-sustaining measures is controversial. The existing literature has not been synthesized yet. To clearly delineate differing views and identify open questions as well as areas of possible consensus, we conducted the first-ever synthesis of the existing literature.

Methods: We searched EMBASE, PubMed, PsycInfo, and Web of Science for scientific publications on forgoing coerced life-sustaining measures and/or providing EOL care for persons with AN who refuse life-sustaining measures, typically artificial nutrition. Palliative care outside of the EOL context and medical assistance in dying were not reviewed. As very little quantitative studies were identified, we qualitatively analyzed conceptual questions, ethical reasoning, legal aspects, stakeholder attitudes, practical aspects, stakeholder needs, and outcome.

Results: We identified 117 eligible publications from 1984 to 2023, mainly case reports (n=26 different cases) and ethical analyses. Conceptualizations of key terms such as terminality, futility, and decision-making capacity (DMC) in AN varied widely and were often value-laden and circular. Ethical reasoning centered on weighing the preservation of life versus quality of life in the context of uncertainty about DMC and likelihood of clinical remission. Studies on stakeholder attitudes reflected this challenge. In some cases, courts ruled against coerced life-sustaining measures and/or in favor of EOL care for persons with AN. While eligibility criteria were contested, recommendations for deliberating about and providing EOL care were consistent. We identified only one study on stakeholder needs and none on outcome. Case reports described quality of life under EOL care as good and death as the most frequent outcome but engagement in voluntary treatment and (partial) clinical remission in some.

Conclusions: The debate around EOL care in AN needs consented, coherent terminology whose value base is reduced to a minimum and made transparent. While more empirical research into decision-making in AN and predictors of outcome might help reduce uncertainty, fundamental normative questions need to be addressed, for example regarding the ethico-legal significance of treatment refusals, the weighing of quantity versus quality of life and the appropriateness of diagnosis-based ethico-legal exceptionalism such as hard paternalism. More research is needed on outcome of and stakeholder needs in EOL care for persons with AN.

Background: To date, there is a lack of standardization and consensus on which outcomes are central to assess the care provided to patients in the last month of life. Therefore, we aimed to conduct a systematic review to identify relevant outcomes to inform the development of a core outcome set for the best care for the dying person.

Methods: We conducted a systematic review of outcomes reported in the scientific literature about the care for the dying person in the last month of life. We searched for peer-reviewed studies published before February 2022 in four electronic databases. To categorise the outcomes, we employed the taxonomy developed by the "Core Outcome Measures in Effectiveness Trials" collaboration.

Results: Out of the 2,933 articles retrieved, 619 were included for analyses. The majority of studies (71%) were retrospective and with data extracted from chart reviews (71%). We extracted 1,951 outcomes in total, from which, after deletion of repeated outcomes, we identified 256 unique ones. The most frequently assessed outcomes were those related to medication or therapeutic interventions and those to hospital/healthcare use. Outcomes related to psychosocial wellbeing were rarely assessed. The closer to death, the less frequently the outcomes were studied.

Conclusions: Most outcomes were related to medical interventions or to hospital use. Only a few studies focused on other components of integrated care such as psychosocial aspects. It remains to be defined which of these outcomes are fundamental to achieve the best care for the dying.

Background: Palliative psychiatry has been proposed as a new clinical construct within mental health care and aims to improve quality of life (QoL) for individuals experiencing severe and persistent mental illness (SPMI). To date, explorations of palliative psychiatry have been largely theoretical, and more work is needed to develop its approaches into tangible clinical practice.

Methods: In this paper, we synthesize existing literature with discussions held at a one-day knowledge user meeting titled "A Community of Practice for Palliative Psychiatry" to generate priorities for research, clinical practice, and education that will help advance the development of palliative psychiatry.

Results: Palliative psychiatry will benefit from research that is co-produced by people with lived experience (PWLE) of mental illness, that clarifies contested concepts within mental health care and wider medicine, and that adapts existing interventions that have the potential to improve the QoL of individuals experiencing SPMI into the mental health care context. Specific methods and tools might be developed for use in clinical spaces taking a palliative psychiatry approach. More work must be done to understand the populations that might benefit from palliative psychiatry, and to mitigate mental health care providers' (MHCPs') anxieties about using these approaches in their work. As palliative psychiatry is developed, current MHCPs, trainees, individuals experiencing SPMI, and their loved ones will all require education about and orientation to this novel approach within mental health care.

Conclusions: There are several priorities in research, clinical practice, and education that can help advance the development of palliative psychiatry. All future work must be considered through a human rights-based, anti-oppressive lens. Research projects, clinical models, and educational initiatives should all be developed in co-production with PWLE to mitigate the epistemic injustices common in mental health care.

Background: Greater patient-caregiver concordance for preferred place of death can increase the chances of patients dying at their preferred place, thus improving quality of life at end-of-life (EOL). We aimed to assess changes in and predictors of patient-caregiver concordance in preference for home death at EOL during the last 3 years of life of patients with advanced cancer.

Methods: We used data from the Cost of Medical Care of Patients with Advanced Serious Illness in Singapore (COMPASS) cohort study of patients with stage IV solid cancer. We interviewed patients and their caregivers every 4 months to assess their preference for home death (for patient), and patient (symptom burden, inpatient usage, financial difficulties) and caregiver (psychosocial distress, spiritual wellbeing, competency and perceived lack of family support) characteristics. We used data from patients' last 3 years of life. We used multivariable multinomial logistic regressions to predict dyad concordance for preference for home death.

Results: A total of 227 patient-caregiver dyads were analyzed. More than half of the patient-caregiver dyads observations were concordant in their preference for home death (54%). Concordance for home death declined closer to death (from 68% to 44%). Concordant dyads who preferred home death were less likely to include older patients [relative risk ratio, 0.97; P=0.03]. Dyads who preferred a non-home death (hospital, hospice, nursing home, unsure or others) were more likely to include patients with greater symptom burden (1.08; P=0.007) and with spousal caregivers (2.59; P=0.050), and less likely to include caregivers with greater psychosocial distress (0.90; P=0.003) and higher spiritual wellbeing (0.92; P=0.007).

Conclusions: This study provides evidence of the dynamic changes in preference for home death among patient-caregiver dyads during last 3 years of patients' life. Understanding the EOL needs of older patients, optimizing home-based symptom control and better caregiver support are recommended to increase likelihood of dyad concordance for home death.

Background: In the United States (US), nearly one third of skilled home health (HH) patients and nearly one half of hospice patients have diagnoses of Alzheimer's disease and related dementias (ADRD), conditions often characterized by a slow decline in cognition and function. Many persons living with dementia (PLWDs) are cared for at home yet may transition between care settings such as skilled HH or hospice, potentially leading to fragmented and poorer care. The purpose of this systematic review was to examine literature pertaining to (I) care transitions for PLWD who are enrolled in skilled HH and hospice in the US, and (II) specifically, care transitions between skilled HH and hospice for PLWD.

Methods: We conducted a systematic review. From March to November 16, 2023, we searched CINAHL, PsychInfo (EBSCO version), and PubMed databases inputting keywords and index terms related to HH, care transition, hospice, and dementia. Articles were included if they were peer-reviewed, primary research studies that were published between 2017-2023 and addressed care transitions for PLWD enrolled in US skilled HH and hospice or transitions between the two settings. We evaluated the quality of each article and extracted relevant data. We described studies by setting while analyzing for similarities and differences between them.

Results: Of 230 studies, 14 met our inclusion criteria. We found that PLWD are at higher risk for early, unsuccessful discharge from-and readmission to-skilled HH; and PLWD are at higher risk for being discharged alive from hospice. Only one study pertained to care transitions for PLWD between skilled HH and hospice.

Conclusions: We included only studies set in the US, as skilled HH and hospice may differ in policy and practice in other countries, which limits our findings. Future work should explore assessment approaches specific to PLWD that lead to higher quality of coordination of care to, from, and between skilled HH and hospice.

Background and objective: The World Health Organization endorses that palliative care has a significant impact on the outcomes of patients with cancer. Integration of palliative care into standard oncology practice has been shown to improve a variety of patient outcomes. In this article, we present our experience with the development of a palliative care tumor board.

Methods: Starting in June 2021, we implemented a multidisciplinary palliative care and oncology tumor board focused on pain and symptom management. Complex cases were presented bimonthly. We retrospectively reviewed our experience. Data were collected on the attendees, the case presented, and the resultant therapeutic decisions made.

Key content and findings: Between June 2021 and September 2022, tumor board meetings were conducted in person and virtually. An average of twelve people attended, including physicians and nurse practitioners from the palliative care, oncology, interventional radiology, radiation oncology, psychiatry, pediatric palliative care, and physical medicine and rehab disciplines. There were 68 patients presented with the most frequently discussed cancer being breast cancer, followed by lung cancer. A total of 18 patients (26%) were referred for procedure, including 7 patients (10%) for radiation and 11 patients (16%) for interventional procedures, and 34 patients (50%) had medication changes as outcomes of the meeting.

Conclusions: The development of a biweekly palliative care conference modeled after traditional oncologic tumor board meetings allows patients to be discussed in a multidisciplinary setting and commonly results in changes in the management for pain and other cancer-related symptoms.

Kidney transplantation is the best renal replacement therapy for patients with end stage kidney disease. It provides longer patient survival and better quality of life than dialysis. The clinical course after kidney transplantation could be complex and variable. Patients may develop various complications or even kidney graft failure. Symptom burden related to uraemia in patients with graft failure, and the side-effects of immunosuppression, cause psychological distress and adversely affect the quality of life of patients. Treatment decisions in patients with graft failure can be challenging to patients and their caregivers. Renal palliative care is an emerging field, but its adoption remains relatively low among kidney transplant recipients with progressive graft failure. In this context, timely consideration and referral for palliative care can improve symptom burden, reduce stress in patients and their caregivers, and facilitate treatment goal setting and advanced care planning. Common barriers to bring palliative care to suitable patients include: (I) misconception in patients, caregivers and healthcare providers that palliative care means abandonment of life sustaining treatment; (II) over-optimistic prognostic assessment and over-aggressive management approach; (III) insufficient awareness and training in palliative care of healthcare professionals; (IV) inadequate access to and insufficient resources in palliative care. Enhanced training and awareness, and further studies, would be needed to optimize the decision process and delineate the benefit of palliative care, and to guide evidence-based practice in the transplant population.