The purpose of this article is to critically analyze the concept of self-perceived burden. The Rodgers Evolutionary Model is augmented with concept critique, a dialogic process grounded in critical hermeneutics. Self-perceived burden is a relatively mature concept with psychological, relational, and dimensional attributes that are shaped by culture and sociopolitical structures. The antecedents are demographics, circumstances, diagnoses, symptoms, prognosis, comorbidities, and knowledge and beliefs. The consequences are psychological, decisional, relational, and existential. Sociocultural factors such as universal health coverage, Confucian ethics, Buddhist/Taoist ethics, karma, and individualist- versus communitarian-based relationships are brought to light. Psychological and relational antecedents and consequences of self-perceived burden were found to be salient.

Bakgrund:Personer med allvarlig och kronisk psykisk sjukdom (SPMI), är en sårbar grupp med hög sjuklighet och dödlighet över genomsnittet. Trots detta är lite känt om dessa personers erfarenheter och behov av palliativ vård. Syfte:Syftet med uppsatsen var att belysa vårdande av psykiskt sjuka patienter med somatisk sjukdom i palliativt skede. Metod:Uppsatsen är en litteraturöversikt. Den huvudsakliga metoden har utgjorts av litteratursökning och analys av relevanta vårdvetenskapliga artiklar. Datainsamlingen har skett genom en inledande och en egentlig litteratursökning Resultat:Resultatavsnittet har tre teman. Det första temat, aspekter av vårdande, belyser palliativ vård av psykiskt sjuka patienter, symtom på livshotande sjukdom hos patientgruppen, förstärkning av den psykiatriska symtom vid livshotande somatisk sjukdom, upplevelser av smärta samt palliativ psykiatri. Det andra temat behandlar den psykiskt sjuka patientens beslutsförmåga och självbestämmande. Det tredje temat, tillit och kommunikation, handlar om relationen mellan sjuksköterskan och den psykiskt sjuka patienten. Diskussion:Människors omvårdnadsbehov i ett palliativt skede är sannolikt likartade, men alla patientgrupper får inte sina behov tillgodosedda. När det gäller personer med SPMI, får patientgruppen dels otillräcklig vård och dels tillgodoses inte omvårdnadsbehoven. En ökad kunskap om dessa personers ökade risk att dö av somatisk sjukdom och större kännedom om patientgruppens symtom på allvarlig somatisk sjukdom, skulle kunna leda till förebyggande vård och tidigare upptäckt av livshotande sjukdom. / Background: Persons with severe and persistent mental illness (SPMI), is a vulnerable group with high morbidity and mortality above average. Despite this, little is known about these people's experiences and needs of palliative care. Aim: The aim of this paper was to highlight the caring of mentally ill patients with somatic illness in palliative phase. Method: This paper is a literature review. The method consisted of a literature search and analysis of relevant healhtcare scientific papers. Data collection was conducted through an initial and an actual literature search. Results: This section consists of three themes. The first theme, aspects of care, highlights the palliative care of mentally ill patients, symptoms of life-threatening disease, increase of psychotic symptoms, experiences of pain and palliative psychiatry. The second theme consider mentally ill patient's decision-making ability and self-determination. The third theme, trust and communication, discusses the relationship between the nurse and the mentally ill patient. Discussion: Human needs in palliative care is probably similar, but all patient groups do not get their needs fulfilled. Persons with SPMI as a group receive partly inadequate care. A better knowledge of these persons increased risk of death from somatic diseases and better knowledge of symptoms of serious somatic illness, could lead to preventive care and early detection of life-threatening disease.

The purpose of this practice inquiry project is to create a model for implementing an outpatient palliative care clinic within an organization of healthcare providers who participate in shared savings for Medicare patients, also known as, an accountable care organization (ACO). The goal of this project is that it can be used by future health care administrators to successfully create and implement an outpatient palliative care clinic. The philosophical nursing foundation for palliative care is discussed to set the groundwork for the model proposed. The benefits of palliative care nursing for patients, families and the ACO are discussed to support the importance of opening an outpatient palliative care clinic. A step by step model has been developed and presented on how to plan and implement an outpatient palliative care program. Tools have been proposed to help successfully and effectively create, implement and evaluate outpatient palliative care clinics within an ACO.

Background: Home health is the fastest-growing healthcare setting in the country. Through Home Health Value-Based Purchasing (HHVBP), the Center for Medicare and Medicaid Services (CMS) provides incentives or penalties to HHAs based on outcomes. Hospitalization and emergency department use are weighted heaviest as poor outcomes. HHVBP requires HHAs to report on whether they are engaging in advance care planning (ACP) conversations. For this study, ACP was defined as a conversation held in advance of a medical crisis with a loved one and/or a health care provider about goals; values; preferences for future medical treatments; and choice of a surrogate decision-maker. Purpose: to determine whether the proportion of Black patients was correlated with robustness of HHAs’ ACP protocols and levels of acute care services use. Methods: A cross-sectional, quasi-interventional design was used. The sample size was n = 89. Electronic surveys about ACP protocols were distributed to HHAs. Existing data about demographics and acute care services use were accessed via CMS websites. Spearman’s correlation coefficient was used. Results: No relationship was found between robustness of ACP protocols and the proportion of Black population per agency. No relationship was found between overall acute care services use rates proportion of Black patients. However, a trend was found: The greater proportion of Black patients, the greater the tendency for an agency to have a higher hospitalization rate. Discussion: Results are compared to current literature and to a CMS-commissioned study’s discussion about the potential for value-based purchasing programs to exacerbate health disparities in vulnerable populations.

Skilled home health care (HH) is the largest and fastest growing long-term care setting in the United States. Patients in HH are served by an interprofessional team, and may have little direct contact with physicians, when discussing their progress, prognosis, and goals of care. Such conversations are part of primary palliative care communication. Evidence on primary palliative care communication training in the non-physician HH interprofessional team is lacking. The objectives of this study were to assess the feasibility, acceptability, and preliminary effectiveness of using a palliative care communication model known as COMFORT© to provide palliative care communication training to HH staff. A randomized controlled trial was conducted at a regional health system in the southeastern U.S. to test online training modules (n = 10) (Group 1) and online training modules plus face-to-face training (n = 8) (Group 2). Measures included training completion rates, staff acceptability ratings, comfort with palliative and end-of-life communication (C-COPE) and moral distress (MMD-HP). Results showed that COMFORT© training was feasible (92%), highly acceptable (>4 on a 6-point scale), and positively correlated with improved C-COPE scores (P = .037). There was no significant difference in moral distress scores pre- and post-intervention or in effectiveness between the groups. However, acceptability of COMFORT© was positively correlated with history of leaving or considering leaving a job due to moral distress ( χ 2 = 7.6, P = .02). Preliminary findings from this pilot study suggest that administration of COMFORT© training was feasible, and it was correlated with increased HH staff comfort with palliative care communication.

This scoping review contains a literature analysis regarding interventions used by health care workers to alleviate guilt in caregivers of patients during end-of-life care. During end-of-life care, many transitions and decisions are made that add to the burden of caregivers. Family caregivers experience many physical, financial, and emotional stressors during the journey of end-of-life care, and this can result in guilt. Feelings of guilt can lead to poorer health outcomes and coping in family caregivers and should be addressed by health providers. In this scoping review, a literature search was conducted using various key terms like "guilt," "hospice," "end-of-life care," "interventions," and "caregivers." The articles that fit the criteria were examined to find tested interventions to alleviate guilt in family caregivers of patients in end-of-life or hospice care. A total of 13 articles were analyzed and divided into three sections, interventions that directly influence guilt, interventions that indirectly influence guilt, and interventions recommended by caregivers and hospice workers. Main themes that emerged for tested and recommended interventions include shared decision making, increased communication with health care providers, increased education on disease process and available options, and an emphasis on caregiver self-care. This research is limited and can provide the framework for future interventions to be tested and applied to the care of family caregivers experiencing guilt while caring for or grieving their loved one.

Purpose: Hispanic or Latino older adults in the US are 1.5 times more likely to have Alzheimer’s and related dementias (ADRD) than white older adults. Nearly one third of all skilled home health (HH) patients and nearly one half of hospice patients have ADRD diagnoses. In ADRD’s long trajectory of decline, patient care transitions bring risks for poor outcomes. Minoritized patients are at high risk for live discharge from hospice, but little is known about those who transition from hospice to skilled HH, the fastest-growing long-term care setting in the US. Aims: to determine demographic and diagnostic variables among patients with ADRD who transition from hospice to skilled HH. Methods: We used Medicare claims data and descriptive statistics including Chi-Square to determine demographic differences in frequency of care transitions from hospice to skilled HH for (a) older adults with ADRD and (b) older adults with co-occurring ADRD and cardiovascular disease (CVD). Results: In N = 272,323 hospice episodes, we found that Hispanic or Latino older adults with co-occurring ADRD and CVD had significantly higher rates of care transitions from hospice to skilled HH (P=0.037) than other racial and ethnic groups with both diagnoses. Conclusions: This is the first study to our knowledge that provides evidence on disparities in care transitions from hospice to skilled HH for Hispanic or Latino older adults with ADRD and CVD. Multiple factors may impact this result. Implications include policy change and greater coordination across systems of care, with specific attention to health equity.

Bakgrund: Pediatrisk palliativ vård är ett begrepp som förknippas med sorg och förtvivlan. Att arbeta som sjuksköterska i denna kontext kan vara både utmanande och påfrestande där det handlar om att se lika mycket till familjens behov som till barnet. Syfte: Syftet med denna litteraturstudie var att beskriva sjuksköterskors upplevelse av pediatrisk palliativ vård med fokus på familjens betydelse. Metod: Litteraturstudien utgick från ett inifrånperspektiv, där människans upplevelse var i fokus. Kvalitativ data analyserades med manifest innehållsanalys och induktiv ansats. Litteratursökningen utfördes med en systematisk sökning i databaserna CINAHL och PubMed som resulterade i att författarna valde ut tolv artiklar som svarade an på syftet. Resultat: Analysen av de tolv artiklarna resulterade i fem slutkategorier; Att kunna anpassa sitt fokus var avgörande när vården ändrade riktning, Att inte räcka till och ta känslomässigt avstånd, Att familjers delaktighet i vården är viktigt men kan också vara en utmaning, Att en djup men balanserad relation till familjen skapar tillfredställelse i arbetet, Att en god kompetens var en viktig byggsten i professionen. Slutkategorierna presenterades i studiens resultat i form av en brödtext med tillhörande citat. Slutsats: Det arbete som bedrivs i den pediatriska palliativa vården ställer stora krav på sjuksköterskor vilket leder till ett ökat behov av både teoretisk och praktisk kunskap för att främja självförtroendet i yrkesutövandet.

Skilled home health (HH) is the largest long-term care setting and the fastest-growing site of healthcare in the United States (U.S.). Home Health Value-Based Purchasing (HHVBP) is a structure of Medicare that penalizes U.S. HH agencies for high hospitalization rates. Prior studies have shown inconsistent evidence about associations of race with hospitalization rates in HH. Evidence supports that Black or African Americans are less likely to participate in advance care planning (ACP), or to complete written advance directives, which could affect their potential for hospitalization when nearing end of life. In this quasi-experimental study, we used Medicare administrative datasets, the Weighted Acute Care Services Use Rates (WACSUR) score, and the Advance Care Planning Protocol (ACPP) score to determine whether the proportion of Black HH patients in the U.S. was correlated with acute care use rates and the robustness of agency protocols on ACP. We used primary and secondary data from the U.S. from 2016-2020. We included Medicare-certified HH agencies. Spearman’s correlation coefficient was used. We found a statistical trend showing that the greater proportion of Black patients enrolled in a HH agency, the greater tendency to have a high hospitalization rate. Our findings suggest that HHVBP may encourage patient selection and exacerbate health disparities. Our findings support recommendations for alternative measures of quality in HH to include measures of goal-concordant care coordination when patients are denied admission to HH.

The purpose of this article is to synthesize the evidence on advance care planning (ACP), determine what is applicable to the home health (HH) setting, and find where gaps in knowledge may exist. An integrative review methodology was chosen. Although there is ample literature on the topic of ACP, most research has been conducted in the acute care, outpatient, and general community settings. There is limited literature regarding ACP with patients living with chronic cardiovascular and pulmonary illnesses, who comprise the majority of the HH population. Some literature has been published regarding the interprofessional team's role in ACP in the HH setting. A gap in knowledge exists regarding ACP in HH, and recommendations for future research are provided.