Creating Effective Models for Delivering Palliative Care in Advanced Liver Disease.
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ABSTRACT: Purpose of review
The current healthcare system is not fully equipped to provide comprehensive support for patients with advanced liver disease (ALD) and their caregivers resulting in concomitant suffering and reduced quality of life (QoL). Integration of palliative care (PC) within routine care has demonstrated benefits in improving symptoms and QoL and reducing healthcare utilization for other serious illnesses but has been underutilized or delayed for ALD care. The purpose of this article is to outline the domains and benefits of PC and discuss the misconceptions and barriers for PC integration, and healthcare delivery models supporting PC integration within ALD care.Recent findings
PC has eight key domains related to physical and mental health, goals for future care, and care of the caregivers. PC offers benefits to improve health outcomes and patient satisfaction and reduce healthcare utilization. To date there have been successful models of PC that are primarily hospital- or community-based; successful models have been PC specialist- or primary/generalist-led.Summary
Concurrent PC within oncology has formed the basis for most evidence-based guidelines. PC integration within ALD care is still in its infancy. While amassing evidence in ALD, hepatology organizations can promote consensus-based integrated PC models that can guide research and practice efforts to increase supportive care for these patients in need and their family caregivers.
SUBMITTER: Verma M
PROVIDER: S-EPMC8035614 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:Individuals with advanced liver disease (AdvLD), such as decompensated cirrhosis (DC) and hepatocellular carcinoma (HCC), have significant palliative needs. However, little research is available to guide health care providers on how to improve key domains related to palliative care (PC). We sought to identify priority areas for future research in PC by performing a comprehensive literature review and conducting iterative expert panel discussions. We conducted a literature review using search terms related to AdvLD and key PC domains. Individual reviews of these domains were performed, followed by iterative discussions by a panel consisting of experts from multiple disciplines, including hepatology, specialty PC, and nursing. Based on these discussions, priority areas for research were identified. We identified critical gaps in the available research related to PC and AdvLD. We developed and shared five key priority questions incorporating domains related to PC. Conclusion: Future research endeavors focused on improving PC in AdvLD should consider addressing the five key priorities areas identified from literature reviews and expert panel discussions.
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Project description:BackgroundAs Huntington's disease (HD) is a progressive disease for which there is no cure yet, patients in the advanced stage of HD may benefit from palliative care.ObjectiveTo review the literature focusing on palliative care in advanced stage HD, and the level of evidence.MethodsPublications between 1993 and October 29th, 2021 from 8 databases (Embase, Web of Science, Cochrane, Emcare, PsycINFO, Academic Search Premier, PMC PubMed Central and Pubmed) were included. The literature was deductively classified based on topics that are part of the definition of palliative care, or as care-related topics that emerged from the literature. Levels of evidence I (high) - V (low) were determined as defined by the Joanna Briggs Institute.ResultsOur search resulted in 333 articles, 38 of which were included. The literature covered four domains of palliative care: physical care, psychological care, spiritual care, and social care. Four other topics in the literature were: advance care planning, end-of-life needs assessments, pediatric HD care, and need for health care services. Most literature was underpinned by a low level of evidence, except for the topics on social care (Level III-V), advance care planning (Level II-V) and end-of-life needs assessments (Level II-III).ConclusionsTo deliver adequate palliative care in advanced HD, both general and HD-specific symptoms and problems need to be addressed. As the level of evidence in existing literature is low, further research is essential to improve palliative care and to meet patient's wishes and needs.
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Project description:Dementia syndrome is common and expected to increase significantly among older people and characterized by the loss of cognitive, psychological and physical functions. Palliative care is applicable for people with dementia, however they are less likely to have access to palliative care. This narrative review summarizes specifics of palliative care in advanced dementia. Most people with advanced dementia live and die in institutional care and they suffer a range of burdensome symptoms and complications. Shortly before dying people with advanced dementia suffer symptoms as pain, eating problems, breathlessness, neuropsychiatric symptoms, and complications as respiratory or urinary infections and frequently experience burdensome transitions. Pharmacological and nonpharmacological interventions may reduce symptom burden. Sensitive observation and appropriate assessment tools enable health professionals to assess symptoms and needs and to evaluate interventions. Due to lack of decisional capacity, proxy decision making is often necessary. Advanced care planning is an opportunity establishing values and preferences and is associated with comfort and decrease of burdensome interventions. Family carers are important for people with advanced dementia they also experience distress and are in need for support. Recommendations refer to early integration of palliative care, recognizing signs of approaching death, symptom assessment and management, advanced care planning, person-centered care, continuity of care, and collaboration of health care providers.
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Project description:The mortality rate from chronic liver disease in the UK is rising rapidly, and patients with advanced disease have a symptom burden comparable to or higher than that experienced in other life-limiting illnesses. While evidence is limited, there is growing recognition that care of patients with advanced disease needs to improve. Many factors limit widespread provision of good palliative care to these patients, including the unpredictable trajectory of chronic liver disease, the misconception that palliative care and end-of-life care are synonymous, lack of confidence in prescribing and lack of time and resources. Healthcare professionals managing these patients need to develop the skills to ensure effective delivery of core palliative care, with referral to specialist palliative care services reserved for those with complex needs. Core palliative care is best delivered by the hepatology team in parallel with active disease management. This includes ensuring that discussions about disease trajectory and advance care planning occur alongside active management of disease complications. Liver disease is strongly associated with significant social, psychological and financial hardships for patients and their carers; strategies that involve the wider multidisciplinary team at an early stage in the disease trajectory help ensure proactive management of such issues. This review summarises the evidence supporting palliative care for patients with advanced chronic liver disease, presents examples of current best practice and provides pragmatic suggestions for how palliative and disease-modifying care can be run in parallel, such that patients do not miss opportunities for interventions that improve their quality of life.
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Project description:Over the last 10 years, one of the key themes of public policy in palliative care has been achievement of choice in place of death. In Marie Curie Hospice Edinburgh a baseline audit conducted in 2006 showed that only a small proportion (18%) of patients referred to hospice services died at home. The audit also revealed that only 31% of those who expressed a preference to die at home were able to do so, whereas 91% of those who chose a setting other than home achieved their preference. Overall achievement of preferred place of death was 56%. However a significant number of patients (29%) did not have a recorded preference. A programme of quality improvement has continued over the last 7 years to improve identification, communication and achievement of preferred place of death for all patients. The mechanisms to change practice have been: changes to documentation; changes to clinical systems to support use of documentation; support for clinical staff to recognise the value of discussing preferences; and support for clinical staff to develop new skills. In addition the programme has been incorporated into local clinical strategy and this has enabled gaps in service to be addressed with a new service to support early discharge of those patients who wish to die at home. A recent audit showed that all patients had a recorded preference or a documented reason why their preference was unclarified. One third of patients died at home - nearly double the proportion that died at home in the baseline audit. Seventy one per cent of patients who wished to die at home actually died at home - a substantial increase from 31% at baseline. Achievement of preferred place of death for patients wishing to die in the hospice remained high at 88%. The focus on assessment of preference for place of death has led to substantial improvements in the identification and achievement of preference for patients dying under the care of the hospice. Furthermore, it has been associated with an increase in the overall proportion of patients who die at home.
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Project description:Each year, nearly 4 million pregnant patients in the United States receive prenatal care-a crucial preventive service that improves pregnancy outcomes for mothers and their children. National guidelines currently recommend 12-14 in-person prenatal visits, a schedule that has remained unchanged since 1930. When scrutinizing the standard prenatal visit schedule, it becomes clear that prenatal care is overdue for a redesign. We have strong evidence of the benefits of prenatal services, such as screening for gestational diabetes and maternal vaccination. However, how to deliver these services is not clear. Studies of prenatal services consistently demonstrate that such care can be delivered in fewer than 14 visits and that patients do not need to visit clinics in person to receive all maternity services. Telemedicine has emerged as a promising care delivery option for patients seeking greater flexibility, and early trials leveraging virtual care and remote monitoring have shown positive maternal and fetal outcomes with high patient satisfaction. Our institution has worked for the past year on a new prenatal care pathway. Our initial work assessed the literature, elicited patient perspectives, and captured the insights of experts in patient-centered care delivery. There are 2 key principles that guide prenatal care redesign: (1) design care delivery around essential services, using in-person care for services that cannot be delivered remotely and offering video visits for other essential services, and (2) creation of flexible services for anticipatory guidance and psychosocial support that allow patients to tailor support to meet their needs through opt-in programs. The rise of coronavirus disease 2019 prompted us to extend this early work and rapidly implement a redesigned prenatal care pathway. In this study, we outline our experience in transitioning to a new prenatal care model with 4 in-person visits, 1 ultrasound visit, and 4 virtual visits (the 4-1-4 prenatal plan). We then explore how insights from this implementation can inform patient-centered prenatal care redesign during and beyond the coronavirus disease 2019 pandemic.
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Project description:Background: Specialty palliative care (PC) is underutilized for patients with end-stage liver disease (ESLD); however, studies exploring patient and caregiver perceptions of PC are lacking. Objectives: To explore patient and caregiver knowledge, perceptions, and preferences about PC in ESLD management. Setting/Subjects: Individuals with ESLD and their informal caregivers were recruited from a large academic medical center in the United States. Design: We conducted semistructured interviews with 15 patients with ESLD and 14 informal caregivers. Purposive sampling was used to balance both transplant-listed and transplant-ineligible patients. We used a brief description of PC to explore participants' knowledge, perceptions, and preferences about PC. Two raters coded interviews independently (κ = 0.95) using template analysis. Results: Participants' knowledge about PC came primarily from their loved ones' experiences with PC, with many conflating PC with end-of-life care. Transplant-listed patients expressed concern that a PC referral would negatively impact their likelihood of receiving a liver transplant. After hearing a brief description of PC, nearly all participants believed that patients with ESLD should learn about PC soon after diagnosis to help support their illness understanding and coping. Conclusions: Study participants reported limited knowledge of PC and often perceived it as hospice care. After receiving education on PC, nearly all participants, regardless of transplant eligibility, advocated for early introduction of PC in ESLD care. Interventions are needed to educate patients with ESLD and their caregivers on the potential role of PC to overcome misperceptions of PC and allow earlier integration of PC into ESLD management.
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Project description: Not available
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Project description:BackgroundAdvanced Parkinson's disease (PD) is a multidimensional neurodegenerative condition with motor and non-motor symptoms contributing to increasing disability and decreasing quality of life. As the disease progresses, patients may become homebound and estranged from neurological care, with dire consequences. We describe the increasing epidemiologic burden of and individual risks faced by patients with palliative-stage PD and their caregivers.MethodsWith the aim of mitigating these risks, we designed and iterated two models of interdisciplinary home visits to maintain continuity of care and illuminate the unmet needs and barriers to care faced by this population. We describe both models in detail, with data on feasibility and patient-centered outcomes achieved in the initial model, and baseline characteristics of participants in the ongoing expanded model. Finally, we illustrate the scope and common themes of such palliative care-informed home visits with two cases.ResultsThe pilot model involved over 380 visits with 109 individual patients. Among those patients, PD severity worsened by nearly 12 points annually on the Unified Parkinson's Disease Rating Scale (UPDRS), without a corresponding decline in quality of life. In an ongoing study of the second iteration of the model, 52 patient-caregiver dyads have completed their initial visit, with 44% bearing a diagnosis of dementia and the majority requiring an assistive device or being bedbound. Two cases highlight the critical importance of thorough medication reconciliation and home safety assessment in the comprehensive evaluation and management of such patients.ConclusionsAs our population ages, therapies increase, and the number of individuals living with advanced PD and related disorders grows, so too does the imperative to recognize and address the palliative care needs of such patients and families. For many, home may be a viable, and perhaps optimal, site for this care.
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