OBJECTIVE: Terminally ill patients at their end-of-life (EOL) phase attending the emergency department (ED) may have complex and specialized care needs frequently overlooked by ED physicians. To tailor to the needs of this unique group, the ED in a tertiary hospital implemented an EOL pathway since 2014. The objective of our study is to describe the epidemiological characteristics, symptom burden and management of patients using a protocolized management care bundle.
METHODS: We conducted an observational study on the database of EOL patients over a 28-month period. Patients aged 21 years and above, who attended the ED and were managed according to these guidelines, were included. Clinical data were extracted from the hospital's electronic medical records system.
RESULTS: Two hundred five patients were managed under the EOL pathway, with a slight male predominance (106/205, 51.7%) and a median age of 78 (interquartile range 69-87) years. The majority were chronically frail (42.0%) or diagnosed with cancer or other terminal illnesses (32.7%). The 3 most commonly experienced symptoms were drowsiness (66.3%), dyspnea (61.5%), and fever (29.7%). Through the protocolized management care bundle, 74.1% of patients with dyspnea and/or pain received opiates while 59.5% with copious secretions received hyoscine butylbromide for symptomatic relief.
CONCLUSION: The institution of a protocolized care bundle is feasible and provides ED physicians with a guide in managing EOL patients. Though still suboptimal, considerable advances in EOL care at the ED have been achieved and may be further improved through continual education and enhancements in the care bundle.
BACKGROUND: Respiratory distress protocols (RDPs) are protocolized prescriptions comprised of 3 medications (a benzodiazepine, an opioid, and an anticholinergic) administered simultaneously as an emergency treatment for respiratory distress in palliative care patients in the province of Quebec, Canada. However, data on appropriate use that justifies the combination of all 3 components is scarce and based on individual pharmacodynamic properties along with expert consensus.
OBJECTIVES: Our study aimed to evaluate the conformity and the effectiveness of RDPs prescribed and administered to hospitalized adult patients.
METHODS: This was a prospective and descriptive study conducted in a single center. Prescription and administration conformity were assessed based on predefined appropriateness criteria.
RESULTS: A total of 467 adult patients were prescribed a RDP, 175 administrations were documented, and 78 patients received at least 1 RDP. Prescription conformity was assessed on 1473 separate occasions over the trial period. Overall prescription conformity was found to be 37% (95% confidence interval [CI]: 33.6-40.4), and administration conformity was 37.7% (95% CI: 26.2-50.7). Low administration conformity was primarily explained by incorrect indications for RDP use. Seemingly important determinants of higher conformity were prescriber's speciality in palliative care, use of preprinted orders, pharmacist involvement, and hospitalization in the palliative care unit.
CONCLUSION: This study highlights important gaps in the use of RDPs in our institution. Health-care provider training appears necessary in order to ensure adequate conformity and allow for further evaluation of RDP effectiveness.
Background: Patients with chronic heart failure (CHF) and patients with chronic obstructive pulmonary disease (COPD) are amenable to integrated palliative care (PC); however, despite the recommendation by various healthcare organizations, these patients have limited access to integrated PC services. In this study, we present the protocol of a feasibility prospective study that aims to explore if an "early integrated PC" intervention can be performed in an acute setting (cardiology and pulmonology wards) and whether it will have an effect on (i) the satisfaction of care and (ii) the quality of life and the level of symptom control of CHF/COPD patients and their informal caregivers.
Methods: A before-after intervention study with three phases, (i) baseline phase where the control group receives standard care, (ii) training phase where the personnel is trained on the application of the intervention, and (iii) intervention phase where the intervention is applied, will be carried out in cardiology and pulmonology wards in the University Hospital Leuven for patients with advanced CHF/COPD and their informal caregivers. Eligible patients (both control and intervention group) and their informal caregivers will be asked to complete the Palliative Outcome Scale, the CANHELP Lite, and the Advance Care Planning Questionnaire at the inclusion moment and 3 months after hospital discharge.
Discussion: The present study will assess the feasibility of carrying out PC-focused studies in acute wards for CHF/COPD patients and draw lessons for the further integration of PC alongside standard treatment. Further, it will measure the quality of life and quality of care of patients and thus shed light on the care needs of this population. Finally, it will evaluate the potential efficacy of the "early integrated palliative care" by comparing against existing practices..
The Supportive Care Nursing Clinical Protocol (SCNCP) was developed to guide holistic nursing care for seriously ill hospitalized patients. The SCNCP uses national guidelines and evidence-based interventions as its foundation. Seriously ill patients may require palliative care, which is synonymous with supportive care. Acute care nurses may not be proficient in providing holistic supportive care for patients with life-limiting illness. At a 670-bed public acute care hospital, palliative care consultation requires a physician order and palliation may arrive late in an illness. Independent nursing interventions can contribute to the alleviation of suffering. Evidence-based interventions used in the SCNCP include using computer applications for breathing exercise (relaxation and mindfulness), topical applications for alleviating thirst, and hand-held fans for dyspnea. The SCNCP is projected for implementation (Spring 2017). The SCNCP will be evaluated for effectiveness after 6 months of implementation. Key indicators for successful implementation include increased nursing knowledge of supportive care and the frequency of protocol implementation as evidenced in the electronic health record. Eventually, the SCNCP will be implemented as the standard for supportive care of the seriously ill for all hospitals in the health system network.
Patients undergoing treatment for cancer often experience stress, fatigue, and pain during their treatment. Medical management of these symptoms can cause additional adverse effects, but it is possible that noninvasive complementary therapies may be able to reduce these symptoms without unwanted adverse effects. The purpose of this study was to assess the feasibility and impact of the Seva Stress Release acupressure protocol on stress, fatigue, pain, and vital signs of patients hospitalized for cancer treatment. Thirty patients receiving cancer treatment and experiencing stress, fatigue, and pain were recruited for the study. After obtaining informed consent, baseline data (survey and vital signs) were obtained, followed by administration of the Seva Stress Release. After the intervention, vital signs were obtained, and patients completed 2 additional surveys. After Seva, patient stress, fatigue, pain, heart rate, and respirations were significantly decreased (P = .000). Sixty-six percent of participants experienced symptom relief for at least 1 to 4 hours. Qualitative findings also indicated that patients reported better sleep and mental clarity after the intervention. The Seva protocol could be taught to nurses and be used as an independent intervention for patients experiencing adverse effects of cancer treatment, to promote comfort and reduce stress and fatigue.
BACKGROUND: In Germany, patients suffering from life-limiting conditions are eligible for specialized outpatient palliative care (SOPC). Evaluation of the quality of this service lacks currently integration of patient-relevant outcomes. There is also no scientific consensus how to prove quality of care in the special context of SOPC adequately. Existing quality reports are primarily based on descriptive structural data which do not allow for estimation of process quality or result quality. The ELSAH study ('Evaluation of Specialized Outpatient Palliative Care in the German state of Hesse') aims to choose - or, if necessary, to adopt - to evaluate and to implement a suit of measures to assess, evaluate and monitor the quality of specialized, home-based palliative care.
METHODS: All 22 SOPC teams providing their services in the state of Hesse, Germany, participate in the ELSAH study. The study is divided in two phases: a preparation phase and a main study phase. Based on the findings of the preparation phase we have chosen a preliminary set of instruments including the Integrated Palliative Outcome Scale, Views on Care, Zarit Burden Interview, Phase of Illness, Goal Attainment Scaling, Eastern Cooperative Oncology Group Performance Status, Consumer Quality Indices Palliative Care and Sense of Security in Care. During the main study phase, we will use a mixed-methods approach to evaluate the instruments' psychometric properties (reliability, validity, feasibility and practicability), to identify barriers, facilitators and limitations of their routine use and to explore how their use affects the care within the SOPC setting.
DISCUSSION: At the end of this study, an outcome- and patient-centered, validated measurement approach should be provided, adapted for standardized evaluations in SOPC across patient groups, palliative care services and regions nationwide. The standardized application of instruments should allow for making valid statements and comparisons of health care quality in SOPC based on process- and outcome-evaluation rather than relying on structural data only. Moreover, the instruments might directly influence the care of patients in palliative situations.
TRIAL REGISTRATION: German Clinical Trials Register (DRKS-ID: DRKS00012421 ).
BACKGROUND: Radiation therapy (RT) results in pain relief for about 6 of 10 patients with cancer induced bone pain (CIBP) caused by bone metastases. The high number of non-responders, the long median time from RT to pain response and the risk of adverse effects, makes it important to determine predictors of treatment response. Clinical features such as cancer type, performance status and pain intensity, and biomarkers for osteoclast activity are proposed as predictors of response to RT. However, results are inconsistent and there is a need for better predictors of RT response. A similar argument can be stated for the development of cachexia; there are currently no predictors that can identify patients who will develop cachexia later in the cancer disease trajectory. Experimental and preclinical studies show that pain, depression and cachexia are related to inflammation. However, it is not known if inflammatory biomarkers can predict CIBP, depression or development of cachexia.
METHODS: This multicenter, multinational longitudinal observational study will include 600 adult patients receiving RT for CIBP. Demographic data, clinical variables, osteoclast and inflammatory biomarkers will be assessed before start of RT, and 3, 8, 16, 24 and 52 weeks after last course of RT. The primary aim of the study is to identify potential predictors for pain relief from RT. Secondary aims are to explore potential predictors for development of cachexia, the longitudinal relationship between pain intensity and depression, and if inflammatory biomarkers are associated with changes in pain intensity, cachexia and depression during one-year follow up.
DISCUSSION: The immediate clinical implication of the PRAIS study is to identify potential predictive factors for a RT response on CIBP, and thereby reduce non-efficacious RT. Patient benefits are fewer hospital visits, reduced risk of adverse effects and more individualized pain treatment. The long-term clinical implication of the PRAIS study is to improve the knowledge about inflammation in relation to CIBP, cachexia and depression and potentially identify associations and mechanisms that can be targeted for treatment.
TRIAL REGISTRATION: ClinicalTrials.gov NCT02107664 , date of registration April 8, 2014 (retrospectively registered).
TRIAL SPONSOR: The European Palliative Care Research Centre (PRC), Department of Clinical and Molecular Medicine, NTNU, Faculty of medicine and Health Sciences, Trondheim, N-7491, Norway.
Résumé: Le midazolam est le principal agent utilisé dans les sédations en soins palliatifs. Mais dans 13 à 17 % des cas, le résultat est considéré comme non satisfaisant et un relais avec un autre agent s’impose. Outre le midazolam, les recommandations internationales et françaises mentionnent comme agents de sédation possibles d’autres benzodiazépines, les neuroleptiques, les barbituriques, le propofol, la kétamine, le gamma-OH et depuis peu la dexmédétomidine. Il s’agit plutôt d’un consensus d’experts que de médecine fondée sur des preuves. Le but de cette mise au point est d’exposer les raisons de l’inefficacité du midazolam, de souligner l’impératif d’une réelle évaluation clinique de la sédation, de faire le point sur l’utilisation éventuelle des différents agents sédatifs envisageables comme alternatives thérapeutiques au vu d’une double expérience d’anesthésistes–réanimateurs et de médecins de soins palliatifs et de présenter les protocoles utilisés à Limoges dans ces situations.
PATRIOT is a phase I study of the ATR inhibitor, AZD6738, as monotherapy, and in combination with palliative radiotherapy. Here, we describe the protocol for this study, which opened in 2014 and is currently recruiting and comprises dose escalation of both drug and radiotherapy, and expansion cohorts.
BACKGROUND: Little has been reported about protocol-driven outpatient palliative care consultation (OPCC) for advanced heart failure (HF).
OBJECTIVES: To describe evaluation practices and treatment recommendations made during protocol-driven OPCCs for advanced HF.
METHODS: We performed content analysis of OPCCs completed as part of ENABLE CHF-PC, an early palliative care HF intervention, conducted at sites in the Northeast and Southeast. T-tests, Fisher's exact, and Chi-square tests were used to evaluate sociodemographic, outcome measures, and site content differences.
RESULTS: Of 61 ENABLE CHF-PC participants, 39 (64%) had an OPCC (Northeast, n=27; Southeast, n=12). Social and medical history assessed most were close relationships (n=35, 90%), family support (n=33, 85%), advance directive status (n=33, 85%), functional status (n=30, 77%); and symptoms were mood (n= 35, 90%), breathlessness (n=28, 72%), and chest pain (n=24, 62%). Treatment recommendations focused on care coordination (n=13, 33%) and specialty referrals (n=12, 31%). Between-site OPCC differences included assessment of family support (Northeast vs. Southeast: 100% vs. 50%), code status (96% vs. 58%), goals of care discussions (89% vs. 41.7%), and prognosis understanding (85% vs. 33%).
CONCLUSION: OPCCs for HF focused on evaluating medical and social history, along with goals of care and code status discussions. Symptom evaluation commonly included mood disorders, pain, dyspnea, and fatigue. Notable regional differences were found in topics evaluated and OPCC completion rates.
BACKGROUND: Many patients with advanced cancer receive chemotherapy close to death and are referred too late to palliative or hospice care, and therefore die under therapy or in intensive care units. Oncologists still have difficulties in involving patients appropriately in decisions about limiting tumor-specific or life-prolonging treatment.
OBJECTIVE: The aim of this Ethics Policy for Advanced Care Planning and Limiting Treatment Study is to develop an ethical guideline for end-of-life decisions and to evaluate the impact of this guideline on clinical practice regarding the following target goals: reduction of decisional conflicts, improvement of documentation transparency and traceability, reduction of distress of the caregiver team, and better knowledge and consideration of patients' preferences.
METHODS: This is a protocol for a pre-post interventional study that analyzes the clinical practice on treatment limitation before and after the guideline implementation. An embedded researcher design with a mixed-method approach encompassing both qualitative and quantitative methods is used. The study consists of three stages: (1) the preinterventional phase, (2) the intervention (development and implementation of the guideline), and 3) the postinterventional phase (evaluation of the guideline's impact on clinical practice). We evaluate the process of decision-making related to limiting treatment from different perspectives of oncologists, nurses, and patients; comparing them to each other will allow us to develop the guideline based on the interests of all parties.
RESULTS: The first preintervention data of the project have already been published, which detailed a qualitative study with oncologists and oncology nurses (n=29), where different approaches to initiation of end-of-life discussions were ethically weighted. A framework for oncologists was elaborated, and the study favored an anticipatory approach of preparing patients for forgoing therapy throughout the course of disease. Another preimplementational study of current decision-making practice (n=567 patients documented) demonstrated that decisions to limit treatment preceded the death of many cancer patients (62/76, 82% of deceased patients). However, such decisions were usually made in the last week of life, which was relatively late.
CONCLUSIONS: The intervention will be evaluated with respect to the following endpoints: better knowledge and consideration of patients' treatment wishes; reduction of decisional conflicts; improvement of documentation transparency and traceability; and reduction of the psychological and moral distress of a caregiver team.
REGISTERED REPORT IDENTIFIER: RR1-10.2196/9698.
Suite à la publication des "Protocoles pour les personnes atteintes de maladie pulmonaire obstructive chronique (MPOC) en fin de vie" par le RQAM en 2006, nous avons déployé dans les Laurentides un projet-pilote sur la MPOC en fin de vie. Il a pour objectifs généraux, notamment de : - Partager une vision commune quant aux aspects cliniques ; - Accroître les services aux personnes atteintes de MPOC en phase de soins de fin de vie ; - Supporter les instances régionales et locales dans l'organisation des services de soins palliatifs de fin de vie pour les personnes atteintes de MPOC ; - Valider un outil de prédictivité du pronostic de survie de la MPOC. Plus précisément, par ce projet, le Dr Guy Cournoyer a tenté de cibler la fin de vie des patients atteints de MPOC en deçà de 18 mois dans le but de nous aider à déterminer le moment où les soins de confort devraient graduellement remplacer les soins curatifs. Nous désirons introduire cette clientèle aux équipes de soins palliatifs de fin de vie. Nous voulons également augmenter le nombre de patients atteints de MPOC ayant pu exprimer leurs volontés de fin de vie et le nombre de décès à domicile. Dans un souci de respect des volontés de fin de vie, nous désirons diminuer les interventions médicales invasives durant les derniers mois précédant le décès. Nous espérons offrir une continuité des services aux différents stades de la maladie et assurer une qualité des services offerts par les équipes interdisciplinaires. Finalement, nous voulons améliorer les connaissances des intervenants sur la maladie pulmonaire obstructive chronique en fin de vie. Nous avons créé un Comité d'implantation régional avec l'élaboration de différents outils de collecte de données et de liaison. De plus, une formation sur la MPOC en fin de vie a été créée et plus de 300 professionnels et médecins ont déjà été formés. Dans le but d'évaluer les résultats et de les comparer dans le cadre d'un projet de recherche, nous nous sommes associés au CSSS de Trois-Rivières afin d'avoir un groupe-contrôle. Les résultats préliminaires obtenus nous permettent de croire que les critères de pronostic établis semblent prédictifs de la mortalité de cette clientèle. De plus, les impacts au niveau de la qualité, de la quantité et de l'accessibilité des soins sont déjà palpables. Toutefois, après l'évaluation finale du projet avec l'aide du Centre de recherche et d'expertise en évaluation de l'École nationale d'administration publique (CREXE) en mai 2011, nous pourrons réellement voir les impacts de ces changements de pratique sur la clientèle et sur notre offre de service. (R.A.).
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INTRODUCTION: For patients with advanced cancer, timely access to palliative care can improve quality of life and enable patients to participate in decisions about their end-of-life care. However, in a UK population of 2500 patients who died from cancer, one-third did not receive specialist palliative care, and of those who did, the duration of involvement was too short to maximise the benefits. Initiating a conversation about palliative care is challenging for some health professionals and patients often have unmet information needs and misconceptions about palliative care. We will work closely with patients and health professionals to develop a patient decision aid and health professional training module designed to facilitate a timely and informed conversation about palliative care.
METHODS AND ANALYSIS: This study is being conducted over 24 months from November 2017 to October 2019 and follows the UK Medical Research Council framework for developing complex interventions and the International Patient Decision Aids Guideline. The Ottawa Decision Support Framework underpins the study. The Supporting Timely Engagement with Palliative care (STEP) intervention will be developed though an iterative process informed by interviews and focus groups with patients with advanced cancer, oncologists, general practitioners and palliative care doctors. An expert panel will also review each iteration. The expert panel will consist of a patient representative with experience of palliative care, health professionals who are involved in advanced cancer care decision-making, a medical education expert and the National Council for Palliative Care director of transformation. The feasibility and acceptability of the decision aid and doctor training will be tested in oncology and general practice settings.
ETHICS AND DISSEMINATION: Ethical approval for the study has been granted by the Office for Research Ethics Committees Northern Ireland (ORECNI), approval reference 17/NI/0249. Dissemination and knowledge transfer will be conducted via publications, national bodies and networks, and patient and family groups.
INTRODUCTION: The last year of life constitutes a particularly vulnerable phase for patients, involving nearly all health and social care structures. Yet, little scientific evidence is available that provides insight into the trajectories including the number and types of care setting transitions, transitions into palliative care and the dying phase. Only few studies have focused on difficulties associated with having to move between health and social care settings in the last year of life, although patients face a significant risk of adverse events. The Last Year of Life Study Cologne (LYOL-C) aims to fill this gap.
METHODS AND ANALYSIS: LYOL-C is a mixed-methods study composed of four steps: (1) Claims data collected by the statutory health insurance funds of deceased persons will be analysed with regard to patient care trajectories, health service transitions and costs in the last year of life. (2) Patient trajectories and transitions in healthcare will additionally be reconstructed by analysing the retrospective accounts of bereaved relatives (n=400) using a culturally adapted version of the Views of Informal Carers-Evaluation of Services Short Form questionnaire and the Patient Assessment of Care for Chronic Conditions Short Form questionnaire adapted for relatives. (3) Qualitative interviews with bereaved relatives (n=40-60) will provide in-depth insight into reasons for transitions and effects on patients' quality of life. (4) Focus groups (n=3-5) with Healthcare Professionals will be conducted to discuss challenges associated with transitions in the last year of life.
ETHICS AND DISSEMINATION: Ethical approval has been obtained from the Ethics Commission of the Faculty of Medicine of Cologne University (#17-188). Results will be submitted for publication in peer-reviewed journals and presented at national and international conferences.
TRIAL REGISTRATION NUMBER: The study is registered in the German Clinical Trials Register (DRKS00011925) and in the Health Services Research Database (VfD_CoRe-Net_17_003806).
Introduction: Idiopathic pulmonary fibrosis (IPF), a progressive life-limiting lung disease affects approximately 128 000 newly diagnosed individuals in the USA annually. IPF, a disease of ageing associated with intense medical and financial burden, is expected to grow in incidence globally. Median survival from diagnosis is 3.8 years, and many of these patients succumb to a rapid death within 6 months. Despite the fatal prognosis, we have found that patients and caregivers often fail to understand the poor prognosis as the disease relentlessly progresses. Based on feedback from patients and families living with IPF, we developed the S-Symptom Management, U-Understanding the Disease, P-Pulmonary Rehabilitation, P-Palliative Care, O-Oxygen Therapy, R-Research Considerations and T-Transplantation ('SUPPORT') intervention to increase knowledge of the disease, teach self-management strategies and facilitate preparedness with end of life (EOL) planning.
Methods: This study is a randomised trial to test the efficacy of SUPPORT intervention compared with routine care in patients with IPF and their caregivers delivered after three clinical visits. We are recruiting a cohort of 64 new IPF patient/caregiver dyads (32 for each dyad).
Results: The trial will evaluate whether the SUPPORT intervention decreases stress, improves symptom burden, quality of life, preparedness and advance care planning for patients and caregivers, quality of dying and death for caregivers if the patient dies during the course of the study, as well as assess the impact of primary palliative care on healthcare resource use near the EOL.
Conclusion: By increasing knowledge of the disease, teaching self-management strategies and facilitating preparedness with EOL planning, we will address a critical gap in the care of patients with IPF.
Trial registration number: NCT02929017; Pre-results.
Objectives: The CA End of Life Option Act (EOLOA), which legalized physician-assisted death (PAD) became effective in 2016. The EOLOA does not require a mental health consultation in all cases nor does it state the standards for the mental health assessment. University of California, San Francisco Medical Center (UCSFMC) policy makers decided to require a mental health assessment of all patients seeking PAD under the EOLOA. The Department of Psychiatry was tasked with developing a standard protocol for the mental health assessment of patients seeking PAD.
Methods: Members of the consultation-liaison service developed a document to guide members in completing the mental health evaluations for patients requesting PAD.
Results: A committee at UCSFMC developed a clinical protocol informed by the law with an additional local expectation of an evaluation by a psychiatrist or clinical psychologist. The consultation-liaison psychiatry group at UCSF developed a standard protocol for the psychiatric assessment for use by clinicians performing these assessments. Attention to the cognitive, mood, and decisional capacity status pertinent to choosing PAD is required under the clinical guidance document. Case vignettes of six early patients evaluated for PAD are presented.
Conclusions: The local adoption of the California EOLOA by UCSFMC requires a mental health assessment of all patients requesting EOL services at UCSF. The clinical guideline for these assessments was locally developed, informed by the literature on EOL in other jurisdictions where it has already been available.
AIMS: To explore and understand the experiences of terminally ill patients and their relatives regarding dignity during end-of-life care in the emergency department.
BACKGROUND: The respect given to the concept of dignity is significantly modifying the clinical relationship and the care framework involving the end-of-life patient in palliative care units, critical care units, hospices and their own homes. This situation is applicable to in-hospital emergency departments, where there is a lack of research which takes the experiences of end-of-life patients and their relatives into account.
DESIGN: A phenomenological qualitative study.
METHODS: The protocol was approved in December 2016 and will be carried out from December 2016-December 2020. The Gadamer's philosophical underpinnings will be used in the design and development of the study. The data collection will include participant observation techniques in the emergency department, in-depth interviews with terminally ill patients and focus groups with their relatives. For the data analysis, the field notes and verbatim transcriptions will be read and codified using ATLAS.ti software to search for emerging themes.
DISCUSSION: Emerging themes that contribute to comprehending the phenomenon of dignity in end-of-life care in the emergency department are expected to be found. This study's results could have important implications in the implementation of new interventions in emergency departments. These interventions would be focused on improving: the social acceptance of death, environmental conditions, promotion of autonomy and accompaniment and assumption (takeover) of dignified actions and attitudes (respect for human rights).
BACKGROUND: In palliative care contexts, support programs for families with a severely ill parent and minor children are few, and even fewer have been evaluated scientifically. The aims of this study are to examine feasibility and potential effects of a modified version of the Family Talk Intervention (FTI) in palliative care.
METHODS: This ongoing family-centered intervention has a quasi-experimental design comparing one intervention and one comparison group. The intervention includes severely ill parents who have minor children (aged 6-19 yrs) and are receiving advanced homecare in Stockholm, Sweden between March 2017 and March 2018. The main goal of the FTI is to support family communication through psycho-education and narrative theory. The modified FTI consists of six meetings with family members, and is held by two interventionists. Each family sets up needs-based goals for the intervention. For evaluation purposes, data are collected by questionnaire before the intervention, within two months after baseline, and one year after baseline. Interviews will be conducted within two months after FTI is completed. Notes taken by one of the interventionists during the family meetings will also be used. Questionnaire data analysis will focus on patterns over time using descriptive statistics. For interview data and notes, content analysis will be used.
DISCUSSION: This study will add knowledge about palliative care for parents who have minor children. It will contribute by testing use of FTI in palliative care, and point out directions for future evaluations of FTI in palliative care settings.
TRIAL REGISTRATION: ClinicalTrials.gov Identifier NCT03119545 , retrospectively registered in April 18, 2017.
BACKGROUND: In 2007, the European Association of Palliative Care (EAPC) provided a comprehensive set of recommendations and standards for the provision of adequate pediatric palliative care. A number of studies have shown deficits in pediatric palliative care compared to EAPC standards. In Germany, pediatric palliative care patients can be referred to specialized outpatient palliative care (SOPC) services, which are known to enhance quality of life, e.g. by avoiding hospitalization. However, current regulations for the provision of SOPC in Germany do not account for the different circumstances and needs of children and their families compared to adult palliative care patients. The "Evaluation of specialized outpatient palliative care (SOPC) in the German state of Hesse (ELSAH)" study aims to perform a needs assessment for pediatric patients (children, adolescents and young adults) receiving SOPC. This paper presents the study protocol for this assessment (work package II).
METHODS/DESIGN: The study uses a sequential mixed-methods study design with a focus on qualitative research. Data collection from professional and family caregivers and, as far as possible, pediatric patients, will involve both a written questionnaire based on European recommendations for pediatric palliative care, and semi-structured interviews. Additionally, professional caregivers will take part in focus group discussions and participatory observations. Interviews and focus groups will be tape- or video-recorded, transcribed verbatim and analyzed in accordance with the principles of grounded theory (interviews) and content analysis (focus groups). A structured field note template will be used to record notes taken during the participatory observations. Statistical Package for Social Sciences (SPSS, version 22 or higher) will be used for descriptive statistical analyses. The qualitative data analyses will be software-assisted by MAXQDA (version 12 or higher).
DISCUSSION: This study will provide important information on what matters most to family caregivers and pediatric patients receiving SOPC. The results will add valuable knowledge to the criteria that distinguish SOPC for pediatric from SOPC for adult patients, and will provide an indication of how the German SOPC rule of procedure can be optimized to satisfy the special needs of pediatric patients.
TRIAL REGISTRATION: Internet Portal of the German Clinical Trials Register ( www.germanctr.de , DRKS-ID: DRKS00012431).
BACKGROUND: Palliative care for advanced heart failure (HF) is generally recommended. However, few reports have focused on the particulars of treatment, or the clinical course of HF on a specific treatment regimen.
OBJECTIVE: Palliation adequate to allow patients to avoid HF admission and die at home.
METHODS: Patients from a veterans administration regional practice with multiple, recent hospital admissions were enrolled in community hospice programs. Treatment of HF with reduced left ventricular ejection fraction (HFrEF) included guidelines-directed medical therapy, digoxin, opioids, and oral bumetanide (with metolazone as needed) rather than intravenous diuretics. Levodopa (l-dopa) was added when conventional therapy failed to control symptoms. HF with preserved EF was also treated with bumetanide and opioids.
RESULTS: Thirty male veterans, 23 of them with HFrEF, had 90 HF admissions in the 6 months before enrollment, and 3 HF admissions during follow-up of at least 14 months. Twenty-one patients died, 18 of them at home; 14 died within 5 months, and the rest lived much longer. Failure to improve with initial therapy predicted early death. Results were similar for those with reduced and preserved left ventricular ejection fraction. L-dopa was started in 13 patients and tolerated by 8 patients; functional class improved and B-type natriuretic peptide declined after treatment.
CONCLUSIONS: With this treatment protocol, there were few HF admissions and patients were able to die at home. It can be used as a guide to therapy, or as an approach that can be tested with additional study.