This dissertation explores the existing barriers for early integration of palliative home care in oncology care and the differences between early and late involvement of palliative home care. Furthermore, an intervention model for early integration of palliative home care in oncology care is developed following the steps of the Medical Research Council Framework. This model is then tested in a pilot pre post study on its feasibility and wacceptability.
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BACKGROUND: Advanced 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.
METHODS: With 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.
RESULTS: The 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.
CONCLUSIONS: As 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.
This article examines the evolution of advance care planning (ACP) in Singapore through the development of a less-formal, communications-based model - the Living Matters program - and its experience with local cultural and community responses to the process and its outcomes. Living Matters is, in practice, arguably a communitarian approach to ACP. The article then examines the challenges Living Matters poses to the overarching legal framework for ACP and suggests improvements to the proxy decision-making framework under the Mental Capacity Act (Singapore, cap 177A, 2010 rev ed), offering more flexible legal tools for ACP, and more regulatory support for the means to implement ACP outcomes effectively.
INTRODUCTION: Caring for people with life-threatening illnesses is a key part of working in health care. While South Africa launched the National Policy Framework and Strategy for Palliative Care 2017-2022, integrating palliative care into existing public health care is in its infancy. Most patients in the Western Cape have poor access to palliative care, an inequality felt hardest by those living in rural areas.Building the model: In 2018, with district wide institutional managerial support, a palliative care model for rural areas was initiated in the Western Cape. The process involved setting up hospital- and community-based multi-professional palliative care teams, initiating weekly palliative care ward rounds, training champions in palliative care and raising awareness of palliative care and its principles.
DISCUSSION: Establishing regular ward rounds has changed the way patients needing palliative care are managed, particularly in challenging the mindsets of specialist departments. The emergence of the multi-professional team listening and planning together at the patient's bedside has restored some of the dignity and ethos of patient-centred care, which is a core principle of the provincial Health Care 2030 vision.
CONCLUSION: In a short time period, we have managed to build a service that aims to improve care for palliative patients in rural areas. Its strength lies in a multi-professional patient-centred approach and improved communication between different components of the health system, providing a more seamless service that supports patients when they need it most.
OBJECTIVE: The purpose of this study was to conduct a stakeholder analysis of the strengthening a palliative approach to long-term care (SPA-LTC) model and refine it based on feedback from long-term care (LTC) residents and their families, staff, researchers and decision makers.
METHODS: We used a mixed-methods design to conduct a stakeholder analysis of the SPA-LTC model that consisted of two sequential components: qualitative focus groups with LTC staff followed by a quantitative survey with key stakeholders.
RESULTS: Twenty-one LTC staff provided feedback about the SPA-LTC model after residents relocated to LTC, during advanced illness and at end of life and in the period of grief and bereavement. This feedback helped to guide revisions of the model. According to the survey results, the SPA-LTC model was well received by 35 stakeholders, but its feasibility was questioned.
CONCLUSION: The Canadian SPA-LTC model is evidence based and endorsed by LTC staff and stakeholders. Efforts are needed to determine the feasibility of implementing the model to ensure that residents' needs are made a priority while in LTC.
OBJECTIVE: The goal of this scoping review was to identify existing palliative models in long-term care (LTC) homes and differentiate between the key components of each in terms of training/capacity-building strategies; resident, family and staff support; and advance care planning (ACP) and goals-of-care discussions.
METHODS: We conducted a scoping review based on established methods to summarize the international literature on palliative models and programs for LTC. We analyzed the data using tabular summaries and content analysis.
RESULTS: We extracted data from 46 articles related to palliative programs, training/capacity building, family support, ACP and goals of care. Study results highlighted that three key components are needed in a palliative program in LTC: (1) training and capacity building; (2) support for residents, family and staff; and (3) ACP, goals-of-care discussion and informed consent.
CONCLUSION: This scoping review provided important information about key components to be included in a palliative program in LTC. Future work is needed to develop a model that suits the unique characteristics in the Canadian context.
Advance care plans (ACP) align care with individual values and goals for the end of life, yet their rates are low. Communication barriers are a primary reason for these low rates. Precision health approaches that target individuals based on personal needs, behaviors, or choices may improve communication and positively influence rates of advance care plans. A framework to guide these efforts is needed. The purpose of this study is to develop a framework that guides clinicians in identifying individuals who will benefit from targeted advance care planning conversations. Walker and Avant’s theory derivation strategy integrates concepts of social marketing theory, population segmentation, the marketing mix, and the transtheoretical model of behavior change into a novel framework. The Aligning Individuals with Meaningful End-of-Life Discussions to Promote ACP (TakingAIM) model promotes population segmentation by integrating social marketing theory and the marketing mix into conceptual definitions within the context of ACP: plan (product), perception (price), preference (promotion), and pathway (place). The transtheoretical model of behavior change further guides ACP conversations at the individual level. Identifying at-risk groups and targeting their specific needs may improve the rates of advance care plans. This framework is appropriate for use in any clinical setting and is ready for empirical testing.
BACKGROUND: Given that a wide variation in tumor response rates and survival times suggests heterogeneity among the patients with advanced pancreatic cancer (APC) who underwent second-line (L2) chemotherapy, it is a challenge in clinical practice to identify patients who will receive the most benefit from L2 treatment.
METHODS: We selected 183 APC patients who received L2 palliative chemotherapy between 2010 and 2016 from a medical center as the development cohort. A Cox proportional hazard model was used to identify the prognostic factors and construct the nomogram. An independent cohort of 166 patients from three other hospitals was selected for external validation.
RESULTS: The nomogram was based on eight independent prognostic factors from the multivariate Cox model: sex, Eastern Cooperative Oncology Group performance status, reason for first-line (L1) treatment discontinuation, duration of L1 treatment, neutrophil-to-lymphocyte ratio, tumor stage, body mass index, and serum CA19-9 levels at the beginning of L2 treatment. The model exhibited good discrimination ability, with a C-index of 0.733 (95% CI, 0.681-0.785) and 0.724 (95% CI, 0.661-0.787) in the development and validation cohorts, respectively. The calibration plots of the development and validation cohorts showed optimal agreement between model prediction and actual observation in predicting survival probability at 6 months, 1 year, and 2 years.
CONCLUSIONS: This study developed and externally validated a prognostic model that accurately predicts the survival outcome of APC patients prior to L2 palliative chemotherapy, which could assist in clinical decision making, counselling for treatment, and most importantly, prognostic stratification of patients.
Les codes sous-jacents de la démarche palliative, d’une part, et du management, d’autre part, pourraient paraître antinomiques. Pourtant, l’exercice des managers au sein d’un établissement de santé ou du médico-social est censé côtoyer les principes du care comme mode relationnel avec ses employés. Cet article retrace la genèse de ce questionnement né de la sollicitation d’enseigner les soins palliatifs à des futurs directeurs. En effet, la pratique pédagogique nous a amenés à considérer les soins palliatifs non seulement comme un contenu d’enseignement, mais comme un potentiel modèle managérial intégrant à la fois une vision de co-construction des projets, une implication à tous les niveaux des professionnels, l’empathie dans la relation et la prise en compte de l’impossible.
Purpose: To explain and predict racial or ethnic disparities in advance care planning (ACP) behaviors among American adults by using the Integrated Behavioral Model (IBM) and the Precaution Adoption Process Model.
Methods: A randomized, observational, nonexperimental, cross-sectional study design was used to survey American adults between 40 and 80 years of age (n = 386).
Results: The majority of respondents (75%) had not completed ACP. Significant differences were found by race or ethnicity: 33% of Whites had completed ACP versus Hispanics (18%) and Blacks (8%). Whites had statistically significantly higher levels of most IBM constructs compared with Blacks and Hispanics. The IBM predicted 28% of the variance in behavioral intention. After controlling for sociodemographic variables, direct attitudes, indirect attitudes, and indirect perceived norms were significant predictors of behavioral intention.
Conclusion: The IBM and the Precaution Adoption Process Model are useful frameworks for interventions designed to increase ACP among racial or ethnic minorities in the United States.
This quality improvement project utilized a risk stratification process and an advance care planning (ACP) tool to identify patients at high risk of death and prompt ACP discussions and documentation of health care preferences in the electronic health record. Inherent uncertainty in heart failure (HF) prognostication and provider time constraints impede initiation of timely ACP discussions. In an effort to mitigate these obstacles, the Seattle Heart Failure Model was utilized to calculate mortality risk for 195 patients in an ambulatory HF clinic. Next, a HF-specific ACP tool, developed for this project, was used to prompt and guide ACP discussions with patients determined to have a prognosis of life expectancy of 3 years or less. The project yielded a 35% completion of ACP tools over 3 months, with 100% of these entered into the electronic health record. Postimplementation surveys suggest clinic staff believe a comprehensive and systematic approach to ACP services facilitates timely ACP discussions and decision making in the outpatient setting.
Background: Attending to the religious/spiritual (R/S) concerns of patients is a core component of palliative care. A primary responsibility of the chaplain is to conduct a thorough assessment of palliative care patients' R/S needs and resources. Problems with current approaches to spiritual assessment in all clinical contexts, including palliative care, include limited evidence for their validity, reliability, or clinical usefulness; narrative content; and lack of clinical specificity.
Objectives: The aim of our work was to develop an evidence-based, quantifiable model for the assessment of unmet spiritual concerns of palliative care patients near the end of life.
Design: The PC-7 model was developed by a team of chaplains working in palliative care. Phase 1 used literature in the field and the chaplains' clinical practice to identify key concerns in the spiritual care of palliative care patients. Phase 2 focused on developing indicators of those concerns and reliability in the chaplains' rating of them.
Results: Key concerns in the model include the following. Need for meaning in the face of suffering; need for integrity, a legacy; concerns about relationships; concern or fear about dying or death; issues related to treatment decision making; R/S struggle; and other concerns. An approach to scoring the patients' degree of unmet spiritual concerns was adapted from the literature. Assessing cases from the chaplains' practice led to high levels of agreement (reliability).
Conclusion: Using the PC-7 model, chaplains can describe and quantify the key spiritual concerns of palliative care patients. Further research is needed to test its validity, reliability, and clinical usefulness.
Palliative care is a growing specialty that addresses the needs of individuals diagnosed with advanced illness and their caregivers. Although palliative care has been shown to improve a variety of patient- and caregiver-centered outcomes, access to comprehensive palliative care services for patients is often limited. There is a need to identify the most effective approaches to delivering palliative care to patients in community settings. In fiscal year 2017, based on extensive input from a diverse set of stakeholders, the Patient-Centered Outcomes Research Institute (PCORI) funded nine multisite comparative clinical effectiveness research (CER) trials focused on community-based delivery of palliative care for a total investment of $80 million. These studies, focusing on advance care planning and models of palliative care delivery, represent some of the largest most complex palliative care trials funded to date. Each study evaluates both patient and caregiver outcomes, and together, these trials include a broad range of health conditions, interventions, and settings of care. PCORI has also fostered a learning network of the funded awardees to facilitate the successful conduct of these CER studies and to support awardee efforts to develop collaborative products relevant to advancing the field of palliative care research and practice. The protocols of each of the nine trials, detailed in this issue, demonstrate the expansive reach of the investment PCORI has made in an effort to further the research agenda and provide substantive research evidence in stakeholder-identified areas of need in the field of palliative care.
Introduction: Studies show that home-based palliative care (HBPC) improves participant outcomes and satisfaction with care while also decreasing hospitalizations and emergency department visits. U.S. health care payment reforms create financial opportunities to offer HBPC. Consequently, more HBPC programs are emerging, heightening the need to evaluate their effectiveness.
Methods: This randomized, controlled trial is comparing the effectiveness of an evidence-based model of HBPC and enhanced usual primary care for participants who receive primary care from medical groups and clinics organized under an accountable care organization or Medicare Advantage plan. Palliative care services are reimbursed by our partnering health plan provider. The five-year trial will enroll 1155 seriously ill participants (and ~884 of their caregivers) with heart failure, chronic obstructive pulmonary disease, or advanced cancer. We are collecting data via telephone surveys with participants at baseline and one and two months postenrollment and with caregivers at baseline, one and two months postenrollments, and following the death of a loved one. We are collecting participant-reported outcome measures of pain, symptoms, anxiety, depression, participant-provider communication, and hope. Caregiver outcome measures include caregiver burden, communication with providers, anxiety, and depression. Additional outcomes are participant survival time and participants' emergency department visits and hospitalizations.
Study Implementation: Challenges and Contributions: Our research team has encountered several significant challenges in early study implementation. These include engaging primary care providers in the study and coordinating logistics with a health plan. Both challenges have contributed to a lag in participant enrollment. Despite these challenges, our study holds tremendous promise to accelerate adoption and spread of an evidence-based HBPC model across the country.
Introduction: Patients with end-stage liver disease (ESLD) suffer from myriad symptoms due to the systemic effects of the disease and unpredictable acute episodes, which contribute to progressive deterioration in quality of life (QOL). Despite clear evidence that palliative care (PC) improves QOL in other serious illnesses, PC is underutilized and delayed for ESLD patients. Through a comparative effectiveness trial of specialist led consultative PC (Model 1) versus trained hepatologist led PC (Model 2), we aim to build evidence on introducing PC into the routine outpatient care of ESLD patients.
Objective: We hypothesize that trained hepatologist led PC model will have a better improvement in QOL compared to consultative PC model.
Methods: This two-arm, multicenter cluster-randomized trial assesses the effectiveness of two PC models for patients with ESLD. Fourteen clinical centers will recruit 1260 patient-caregiver dyads. Each center is the unit of randomization. Hepatologists at sites randomized to the Model 2 have undergone web-based training in the principles of PC as pertained to ESLD. PC intervention is delivered over four visits (initial, one, two, and three months). Follow-up assessments occur at 6, 9, and 12 months. Eligible patients are those with new onset or ongoing complications of ESLD with a caregiver willing to participate.
Outcomes: The primary outcome is change in patients' QOL from baseline to three months. Secondary outcomes include symptom burden, depression, distress, satisfaction with care, caregiver burden and QOL, goal concordant care, and health care utilization.
Challenges and Contributions Engagement: research advisory board has been developed with representatives from the participating centers, who have provided active feedback on the protocol, outcomes, study methods, and training program.
Intervention Fidelity: Intervention fidelity will be maintained by adherence to a visit agenda and providers in both models completing a PC checklist after each study visit.
This article describes the Lee Geropalliative Caring Model (GCM), a situation-specific theory that guides geropalliative care, defined as the care of older adults in the last 2 years of life. Underpinned by the theory of human caring, the GCM offers a framework for achieving the person/family outcome of well-being by suggesting caring interventions within 4 priority domains: aligning care, keeping safe, comforting body/mind/spirit, and facilitating transitions to persons with late-stage illness, including frailty and dementia. The GCM can be used to inform practice, policy, education, and research.
BACKGROUND: Novel models that improve generalist-level palliative care for cystic fibrosis (CF) are needed to address the burden of this illness. A screening-and-triage model has the potential to identify clinical problems requiring immediate follow-up by CF professionals. This study describes such a model and its immediate impact on care delivery for CF patients during a two-year period.
METHODS: Eligible adults completed monthly online screening for sources of distress. If results revealed one or more "indicators of concern" on two consecutive screenings, this triggered an attempted triage by a social worker. Completed triages led to prompt follow-up by CF professionals for clinical problems, if indicated. Process data were summarized and generalized linear mixed models were used to evaluate baseline patient characteristics (symptom distress, quality of life, and sociodemographics) associated with the need for prompt follow-up.
RESULTS: A total of 1,015 monthly surveys were completed by 74 patients; 634 (66 patients) had >1 indicators of concern; and 164 surveys (46 patients) had >1 indicators for two consecutive surveys (e.g., global distress, pain, dyspnea, and psychological symptoms). The 164 attempted triages yielded 84 completed triages (51.2%), of which 39 (46.4%) required prompt follow-up. In multivariable analyses, older patients and those with higher symptom distress at baseline were more likely to require prompt follow-up (p < .05).
CONCLUSIONS: Web-based screening that assesses varied domains of distress or burden can identify a subset of CF patients whose clinical problems may benefit from immediate medical or psychological attention. Additional investigations should improve screening efficiency.
Integration of pediatric palliative care (PPC) into management of children with serious illness and their families is endorsed as the standard of care. Despite this, timely referral to and integration of PPC into the traditionally cure-oriented cardiac ICU (CICU) remains variable. Despite dramatic declines in mortality in pediatric cardiac disease, key challenges confront the CICU community. Given increasing comorbidities, technological dependence, lengthy recurrent hospitalizations, and interventions risking significant morbidity, many patients in the CICU would benefit from PPC involvement across the illness trajectory. Current PPC delivery models have inherent disadvantages, insufficiently address the unique aspects of the CICU setting, place significant burden on subspecialty PPC teams, and fail to use CICU clinician skill sets. We therefore propose a novel conceptual framework for PPC-CICU integration based on literature review and expert interdisciplinary, multi-institutional consensus-building. This model uses interdisciplinary CICU-based champions who receive additional PPC training through courses and subspecialty rotations. PPC champions strengthen CICU PPC provision by (1) leading PPC-specific educational training of CICU staff; (2) liaising between CICU and PPC, improving use of support staff and encouraging earlier subspecialty PPC involvement in complex patients' management; and (3) developing and implementing quality improvement initiatives and CICU-specific PPC protocols. Our PPC-CICU integration model is designed for adaptability within institutional, cultural, financial, and logistic constraints, with potential applications in other pediatric settings, including ICUs. Although the PPC champion framework offers several unique advantages, barriers to implementation are anticipated and additional research is needed to investigate the model's feasibility, acceptability, and efficacy.
The experience of parental death concomitant with parental divorce occurs for 46% of Danish children and 50% of American children who lose a parent to death. This experience of loss and double bereavement compounds increased risk of mental health problems. The aim of this study was to explore nursing interventions for double bereaved children that promoted their well-being. A phenomenological-hermeneutic approach was used to conduct 20 interviews with nurses in family cancer care. Ricoeur's theoretical framework was followed with naïve reading, structural analysis, and critical interpretation, resulting in the formulation of a new model of nursing care for these children: the Divorced Family-Focused Care Model. Four themes were apparent: (a) collection of information about family structure, (b) assessment of support needs, (c) initiation of well-being support, and (d) coordination and follow-up focused on the child's well-being. The new intervention model has implications for health care education and implementation of health care policies.
BACKGROUND: We previously developed a robust prognostic model (GS model) to predict the survival outcome of patients with advanced pancreatic cancer (APC) receiving palliative chemotherapy with gemcitabine plus S-1 (GS). This study aimed to validate the application of the GS model in APC patients receiving chemotherapy other than the GS regimen.
PATIENTS AND METHODS: We retrospectively analyzed 727 APC patients who received first-line palliative chemotherapy other than the GS regimen between 2010 and 2016 at four institutions in Taiwan. The patients were categorized into three prognostic groups based on the GS model for comparisons of survival outcome, best tumor response, and in-group survival differences with monotherapy or combination therapy.
RESULTS: The median survival times for the good, intermediate, and poor prognostic groups were 13.4, 8.4, and 4.6 months, respectively. The hazard ratios for the comparisons of intermediate and poor to good prognostic groups were 1.51 (95% confidence interval [CI]), 1.22-1.88, P < .001) and 2.84 (95% CI, 2.34-3.45, P < .001). The best tumor responses with either partial response or stable disease were 57.5%, 40.4%, and 17.2% of patients in the good, intermediate, and poor prognostic groups (P < .001), respectively. For patients in the good prognostic group, first-line chemotherapy with monotherapy and combination therapy had similar median survival times (13.8 vs 12.9 months, P = .26), while combination therapy showed a better median survival time than monotherapy in patients in the intermediate and poor prognostic groups (8.5 vs 8.0 months, P = .038 and 5.7 vs 3.7 months, P = .001, respectively).
CONCLUSION: The results of our study supported the application of the GS model as a general prognostic tool for patients with pancreatic cancer receiving first-line palliative chemotherapy with gemcitabine-based regimens.