barriers to end of life discussions

SUMMARYThere is a growing need for solid organ transplantation (SOT) for people living with human immunodeficiency virus (HIV). With the advent of antiretroviral therapy, people living with HIV are experiencing increased life expectancies and are, therefore, developing more comorbidities, including end-stage organ disease. In cases of advanced organ failure, SOT is often the best therapeutic option to improve quality of life and overall survival. As organ shortages persist, transplantation of organs from donors with HIV to recipients with HIV has become a potential therapeutic option...

Patients with end-stage kidney disease (ESKD) have a high symptom-burden and high rates of morbidity and mortality. Despite this, evidence has shown that this patient group does not have timely discussions to plan for deterioration and death, and at the end of life there are unmet palliative care needs. Advance care planning is a process that can help patients share their personal values and preferences for their future care and prepare for declining health. Earlier, more integrated and holistic advance care planning has the potential to improve access to care services, communication, and preparedness for future decision-making and changing circumstances...

AIM: To investigate the decisional needs in Denmark of people with kidney failure, relatives, and health professionals when planning end-of-life care. DESIGN: A qualitative interview study. METHODS: Individual semi-structured interviews were carried out with people with kidney failure, relatives and health professionals from November 2021 to June 2022. Malterud's systematic text condensation was used to analyse transcripts. RESULTS: A total of 13 patients, 10 relatives, and 12 health professionals were interviewed...

BACKGROUND: As the Canadian population ages and the prevalence of chronic illnesses increases, delivering high-quality care to individuals with advanced life limiting illnesses becomes more challenging. Community-based navigation programs are a promising approach to address these challenges, but little is known about how these programs are successfully implemented to meet the needs of this population. This study sought to identify the key determinants that contribute to the successful implementation of these programs within Canada...

BACKGROUND: Infants with life-limiting conditions are a heterogeneous population. Palliative care for infants is delivered in a diverse range of healthcare settings and by interdisciplinary primary healthcare teams, which may not involve specialist palliative care service consultation. OBJECTIVE: To synthesise the literature for how palliative care is delivered for infants aged less than 12 months with life-limiting conditions. METHODS: An integrative review design...

Many patients in Switzerland wish to die at home. Nevertheless, end-of-life home care requests specific considerations such as basic palliative care knowledge among health care professionals and a well-organized and coordinated health care network which needs to be put in place as early as possible. Beforehand, an open discussion with the patient and the caregiver about their expectations and wishes is mandatory. Furthermore, anticipation about the evolution of the disease, potential symptoms, material requests, psychological and social barriers is the key element to provide home palliative care until the end of life...

Reverse Logistics (RL) of end-of-use/end-of-life products is a key approach for supporting the transition to a circular economy. However, lack of knowledge and experience in designing RL is one of the barriers for companies in implementing successful RL. This research proposes an RL support tool (RLST) for designing RL systems, developed through iterative cycles of theoretical development and empirical testing/feedback from potential users. The RLST builds upon the principles of configuration systems to adapt the various aspects of RL design into a knowledge base and, subsequently, into an Excel-based support tool - in addition to allowing companies to assess their motivation/driver and set the context (e...

TOPIC IMPORTANCE: Since the 1990s, time-limited trials have been described as an approach to navigate uncertain benefits and limits of life-sustaining therapies in patients with critical illness. In this review, we aim to synthesize the evidence on time-limited trials in critical care, establish what is known, and highlight important knowledge gaps. REVIEW FINDINGS: We identified 18 empirical studies and 15 ethical analyses about time-limited trials in patients with critical illness...

Few older adults discuss their end-of-life care wishes with their physician, and even fewer minorities do this. We explored physicians' experience with advance care planning (ACP) including the barriers/facilitating factors encountered when initiating/conducting ACP discussions with South Asians (SA), one of Canada's largest minorities. Eleven primary care physicians (PC) and 11 hospitalists with ≥ 15 per cent SA patients ≥ 55 years of age were interviewed: 10 in 2020, 12 in 2021. Thematic analysis of transcripts indicated that cultural and communication barriers, physician's specialization, SA older adults' lack of ACP awareness, and decision-making deference to family and physicians were barriers to ACP discussions...

BACKGROUND: A randomised clinical trial titled the Carer End of Life Planning Intervention (CELPI) in people dying with dementia evaluated the effect of carer education and support about palliative care on care recipient outcomes. We present a pre-planned qualitative analysis of data collected during the CELPI trial in which needs of carers randomised to the study intervention group were assessed using a novel instrument (Carer Needs Directed Assessment in Dementia (CANDID). This tool aimed to identify carers' perceptions of their own and their care-recipients' needs and is an important step in identifying support provision for dementia-specific, palliative cares services upon hospital discharge...

BACKGROUND: Acknowledging the importance of preparing the pediatric dialysis patient for successful transfer to adult providers, centers from the Standardizing Care to Improve Outcomes in Pediatric End Stage Renal Disease (SCOPE) Dialysis Collaborative developed transition tools and performed iterative implementation of a transition of care (TOC) program to gain real-life insight into drivers and barriers towards implementation of a transition program for patients receiving dialysis. METHODS: A TOC innovation workgroup was developed in 2019 from within SCOPE Collaborative that developed nine educational modules, along with introductory letter and assessment tool to be utilized by SCOPE centers...

BACKGROUND: Physical activity is central to maintaining the quality of life for patients with complex chronic conditions and is thus at the core of neurorehabilitation. However, maintaining activity improvements in daily life is challenging. The novel Stay With It program aims to promote physical activity after neurorehabilitation by cultivating self-monitoring skills and habits. OBJECTIVE: We examined the implementation of the Stay With It program at the Valens Rehabilitation Centre in Switzerland using the normalization process theory framework, focusing on 3 research aims...

BACKGROUND AND OBJECTIVES: Discussing treatment wishes and limitations during medical consultations aims to enable patients to define goals and preferences for future care. Patients and physicians, however, face multiple barriers, resulting in postponing or avoiding the conversation. The aim of this study was to explore an internal medicine outpatient clinic population's perception on (discussing) treatment wishes and limitations. METHODS: Semi-structured interviews were conducted in two rounds with 44 internal medicine outpatient clinic patients at the University Medical Centre Utrecht, a tertiary care teaching medical centre in the Netherlands...

Demographic shifts toward an older and sicker prison population present challenges for corrections leaders and incarcerated people. The priority of custody and control over care in prisons can deprive people of a modicum of autonomy even about expressing their end-of-life wishes. This study was undertaken to inform best practices and identify essential components of end-of-life care planning (EOLCP) for people who will likely die incarcerated. Individual interviews with formerly incarcerated people (n = 16) provided insights on EOLCP knowledge, perceptions, and future plans as each reflected on experiences while incarcerated...

OBJECTIVES: New routes for supply of eye tissue are needed in the UK to support transplant surgery and medical research. Hospice care (HC) and Hospital-based Palliative care (HPC) services represent potential supply routes. This paper reports findings from the survey arm of the Eye Donation from Palliative and Hospice Care-Investigating potential, practice preference and perceptions study (EDiPPPP), objectives of which were to: i) Investigate existing practice in relation to eye donation across HC and HPC settings; ii) identify perceptions of HCPs toward embedding eye donation into routine end of life care planning; iii) investigate the informational, training, or support needs of clinicians regarding eye donation...

Delayed advance planning and costs of life sustaining treatments at end of life significantly contribute to the economic burden of healthcare. Clinician barriers include perceptions of inappropriate timing, lack of skills in end-of-life communication and viewing readiness as a behavior rather than a death attitude. This study developed and validated a measurement of psychological preparedness for advance directive completion. Confirmatory factor analysis ( N = 543) of a 35 item pool (Cronbach α = .96) supported five sub-scales; psychological comfort (α = ...

BACKGROUND: Data on advance care planning (ACP) among migrants in Europe is lacking. Research has shown that few older migrants in the United States perform ACP due to healthcare system distrust, collectivistic values and spirituality/religion. OBJECTIVES: To explore the ACP knowledge and perspectives of older Turkish-origin adults in Belgium requiring palliative care. METHOD: General practitioners (GPs) in Brussels and Antwerp recruited Turkish-origin participants aged ≥ 65 years with palliative care eligibility for this qualitative study...

AIMS: To examine registered nurses' (RNs) behavioural, normative and control beliefs about end-of-life care for patients who are diagnosed with advanced and life-limiting illnesses; and to identify the barriers and facilitators they experience when providing end-of-life care. DESIGN: A sequential explanatory mixed methods study. METHOD: An online cross-sectional survey was conducted using the Care for Terminally Ill Patient tool among 1293 RNs working across five hospitals in the Kingdom of Saudi Arabia...

BACKGROUND: Conscientious objection in nursing has been a topic of much discussion in recent years. Healthcare providers' conscientious objection has been included in Greek legislation. However, little is known about the real experiences of nurses who want to apply conscientious objections in their practice. This study aimed to contribute to filling that gap. METHODS: This qualitative study was conducted with eighteen experienced female nurses. Data were collected through semi-structured in-depth qualitative interviews conducted with purposively selected nurses during the period from October 2019 to January 2020...

BACKGROUND: Geriatric emergency department (GED) guidelines endorse screening older patients for geriatric syndromes in the ED, but there have been significant barriers to widespread implementation. The majority of screening programs require engagement of a clinician, nurse, or social worker, adding to already significant workloads at a time of record-breaking ED patient volumes, staff shortages, and hospital boarding crises. Automated, electronic health record (EHR)-embedded risk stratification approaches may be an alternate solution for extending the reach of the GED mission by directing human actions to a smaller subset of higher risk patients...