Access to Pediatric Hospice and Palliative Care

2019 ◽  
pp. 800-806
Author(s):  
Lisa C. Lindley ◽  
Jessica Keim-Malpass
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Healthcare Delivery ◽  
Healthcare Services ◽  
Healthcare Delivery System ◽  
The Family ◽  
Utilization Of Healthcare ◽  
Hospice And Palliative Care ◽  
Multidimensional Process

Access to high-quality pediatric hospice and palliative care is becoming increasingly important as the prevalence of children with serious illness grows and the complexity of their health at end of life rises. Pediatric hospice and palliative care is end-of-life care focused on enhancing the quality of end of life for the child and the family, preventing and/or minimizing suffering, optimizing function, and offering opportunities for personal and spiritual growth. Access to care is a multidimensional process proceeding from health policy through the characteristics of the healthcare delivery system to the utilization of healthcare services and quality of care accessed.

Improving the Quality of Care across All Settings

2019 ◽  
pp. 573-605
Author(s):  
Marilyn Bookbinder ◽  
Romina Arceo ◽  
James T. McDaniel
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
The United States ◽  
Healthcare Settings ◽  
National Priority ◽  
Hospice And Palliative Care ◽  
Eol Care ◽  
Clinician Assessment ◽  
Care Path

This chapter provides perspectives on quality-based initiatives in the United States across healthcare settings and populations and describes their impact on patient, professional, and system outcomes. The authors discuss the need for quality improvement (QI) at end of life, QI principles, and the models, methods, and tools most frequently used. Also described are areas of national priority for improving end-of-life (EOL) care. A care-path for the end of life is used to illustrate a QI effort and the FOCUS_PDSA method and to encourage use of specific tools for improving EOL care, including respiratory distress, and a clinician assessment of EOL care using The Joint Commission (TJC) tracer methodology. The authors review the linkages between QI and practice changes in hospitals and hospices that ultimately lead to improved EOL care and close with examples of how nurses are providing leadership in the field of quality hospice and palliative care.

scholarly journals Experience of temporary discharge from the inpatient palliative care unit: A nationwide post-bereavement survey for end-of-life cancer patients

2021 ◽  
Author(s):  
Go Sekimoto ◽  
Sakiko Aso ◽  
Naoko Hayashi ◽  
Keiko Tamura ◽  
Chieko Yamamoto ◽  
...  
Keyword(s):  
Palliative Care ◽  
Cancer Patients ◽  
Discharge Planning ◽  
Palliative Care Unit ◽  
The Family ◽  
Positive Experiences ◽  
Bereaved Family ◽  
Hospice And Palliative Care ◽  
Care Evaluation

Abstract Background: Some patients admitted to an inpatient palliative care unit (PCU), and who were discharged temporarily to home, later died at the PCU. The experiences of these patients and their families during temporary discharge are unclear.Methods: This study was part of a nationwide post-bereavement survey, the Japan Hospice and Palliative Care Evaluation 3 study. We sent questionnaires to the bereaved relatives of cancer patients who died in a PCU in 2018.Results: Of the 968 questionnaires sent, 571 (59%) were analyzed. Sixteen percent of the patients experienced temporary discharge from the PCU. Seventy-two percent of the bereaved family reported that the patients said, “I am happy to be discharged to home.” Between 22% and 37% of the patients reported an improvement in their condition after discharge. Family caregivers’ recognition of the better quality of the patient’s life at home and hospital doctors’ assurances of re-hospitalization whenever necessary, were significantly associated with positive experiences of temporary discharge.Conclusion: Bereaved family members recognized temporary discharge as a positive experience for both the patient and the family. Appropriate home palliative care and discharge planning contribute to positive experiences after discharge.

Designing Research With Hospice and Palliative Care Populations

2011 ◽  
Vol 29 (5) ◽  
pp. 335-345 ◽  
Author(s):  
Ashley M. Wohleber ◽  
Daniel S. McKitrick ◽  
Shawn E. Davis
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Quality Of Care ◽  
Informed Consent ◽  
End Of Life ◽  
English Language ◽  
Care Quality ◽  
Design Studies ◽  
Hospice And Palliative Care

Research in palliative care and hospice populations is important for improving quality of care, quality of life, and provider understanding of individuals at the end of life. However, this research involves many potential challenges. This review seeks to inform and assist researchers targeting to design studies targeting hospice and palliative care patients by presenting a thorough review of the published literature. This review covers English-language articles published from 1990 through 2009 listed in the PsycInfo, Medline, or CINAHL research databases under relevant keywords. Articles on pediatric hospice were not included. Issues discussed include study design, informed consent, and recruitment for participants. Synthesized recommendations for researchers in these populations are presented.

Veterans

2019 ◽  
pp. 539-544
Author(s):  
Deborah Grassman
Keyword(s):  
Posttraumatic Stress Disorder ◽  
Palliative Care ◽  
Posttraumatic Stress ◽  
End Of Life ◽  
Healthcare Delivery ◽  
Moral Injury ◽  
Care Needs ◽  
Hospice And Palliative Care ◽  
Bereavement Care ◽  
Palliative Care Needs

In many ways, veterans face the end of life in a similar manner as civilians. In some ways, however, they experience death differently. Military experiences often change veterans in fundamental ways that shape, mold, destroy, and redeem the rest of their lives, including the ends of their lives. This chapter identifies some of these differences in the hopes that readers will understand the unique hospice and palliative care needs of veterans and their families. For example, the value of stoicism so earnestly and necessarily indoctrinated in young soldiers may interfere with a peaceful death for veterans depending on the degree to which stoicism has permeated their post-military lives. This chapter provides lessons that inform healthcare delivery for veterans and bereavement care for their families. It explains how posttraumatic stress disorder (PTSD) can become exacerbated at the end of life, complicating peaceful dying. An overlooked, unassessed wound, now identified as “soul injury” and distinguishable from moral injury, will also be addressed.

Veteran Population

2021 ◽  
pp. 364-380
Author(s):  
Holly Pilewski
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
End Of Life ◽  
Veterans Affairs ◽  
Social Needs ◽  
Life Care ◽  
Department Of Veterans Affairs ◽  
High Quality ◽  
Hospice And Palliative Care

The Department of Veterans Affairs is a large, multilayered administration providing veterans healthcare, numerous medical and caregiver benefits, and cemetery and burial services. Veterans account for a large portion of the population and have unique physical, psychological, spiritual, and social needs that are shaped by veterans’ perceptions of military experience and injuries or medical conditions related to their service. Many veterans receive their care outside the VA. This makes it imperative for everyone to have a basic understanding of the VA, military culture, and veterans’ multifaceted needs. Hospice and palliative care in and outside the VA setting are essential in order to provide veterans with improved quality of life and high-quality end-of-life care.

Prerequisites to support high-quality clinical trials in children and young people

2020 ◽  
pp. archdischild-2019-318677
Author(s):  
Steven Hirschfeld ◽  
Florian B Lagler ◽  
Jenny M Kindblom
Keyword(s):  
Clinical Trials ◽  
Healthcare Delivery ◽  
Paediatric Population ◽  
Ecosystem Functions ◽  
Healthcare Delivery System ◽  
High Quality ◽  
Children And Young People ◽  
The Right ◽  
Support Decision Making

Children have the right to treatment based on the same quality of information that guides treatment in adults. Without the proper evaluation of medicinal products and devices in paediatric clinical trials that are designed to meet the rigorous standards of the competent authorities, children are discriminated from advances in medicine. There are regulatory, scientific and ethical incentives to address the knowledge gap regarding efficacy and safety of medicines in the paediatric population. High-quality clinical trials involving children of all ages can generate data that will ultimately close the knowledge gaps and support decision making.For clinical trials that enrol children, the needs are specialised and often resource intensive. Prerequisites for successful paediatric clinical trials are personnel with training in both paediatrics and neonatology and expertise in clinical trials in these populations. Moreover, national and international networks for efficient collaboration, dissemination of information, and sharing of resources and expertise are also needed, together with competent, efficient and high-quality local infrastructure with effective processes. Monitoring and oversight bodies with the relevant competence, including expertise in paediatrics, is also an important prerequisite for paediatric clinical trials. Compromise in any of these components will compromise the downstream results.This paper discusses the structures and competences needed in order to perform effective, high-quality paediatric clinical trials with the ultimate goal of better medicines and treatments for children. We propose a model of examining the process as a series of components that each has to be optimised, then all the components are actively optimised to function together as an ecosystem, and the resulting ecosystem functions well with the general research system and the healthcare delivery system.

scholarly journals Evidence on the economic value of end-of-life and palliative care interventions: a narrative review of reviews

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Xhyljeta Luta ◽  
Baptiste Ottino ◽  
Peter Hall ◽  
Joanna Bowden ◽  
Bee Wee ◽  
...  
Keyword(s):  
Palliative Care ◽  
Cost Effectiveness ◽  
End Of Life ◽  
Resource Use ◽  
Economic Value ◽  
Healthcare Delivery ◽  
Dying Patients ◽  
Home Based ◽  
Population Type ◽  
Care Models

Abstract Background As the demand for palliative care increases, more information is needed on how efficient different types of palliative care models are for providing care to dying patients and their caregivers. Evidence on the economic value of treatments and interventions is key to informing resource allocation and ultimately improving the quality and efficiency of healthcare delivery. We assessed the available evidence on the economic value of palliative and end-of-life care interventions across various settings. Methods Reviews published between 2000 and 2019 were included. We included reviews that focused on cost-effectiveness, intervention costs and/or healthcare resource use. Two reviewers extracted data independently and in duplicate from the included studies. Data on the key characteristics of the studies were extracted, including the aim of the study, design, population, type of intervention and comparator, (cost-) effectiveness resource use, main findings and conclusions. Results A total of 43 reviews were included in the analysis. Overall, most evidence on cost-effectiveness relates to home-based interventions and suggests that they offer substantial savings to the health system, including a decrease in total healthcare costs, resource use and improvement in patient and caregivers’ outcomes. The evidence of interventions delivered across other settings was generally inconsistent. Conclusions Some palliative care models may contribute to dual improvement in quality of care via lower rates of aggressive medicalization in the last phase of life accompanied by a reduction in costs. Hospital-based palliative care interventions may improve patient outcomes, healthcare utilization and costs. There is a need for greater consistency in reporting outcome measures, the informal costs of caring, and costs associated with hospice.

Hospital end-of-life care: families’ free-text notes

2020 ◽  
pp. bmjspcare-2020-00239
Author(s):  
Sandra Kurkowski ◽  
Johannes Radon ◽  
Annika R Vogt ◽  
Martin Weber ◽  
Stephanie Stiel ◽  
...  
Keyword(s):  
Palliative Care ◽  
Quality Of Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Qualitative Content Analysis ◽  
Free Text ◽  
Life Care ◽  
Quality Aspects ◽  
Care Of The Dying

BackgroundPalliative care strives to improve quality of life for patients with incurable diseases. This approach includes adequate support of the patients’ loved ones. Consequently, loved ones have personal experiences of providing end-of-life care for their next. This is a resource for information and may help to investigate the loved ones’ perspectives on need for improvements.AimTo identify further quality aspects considered important by loved ones to improve the quality of care at the end of life as an addition to quantitative results from the Care of the Dying Evaluation for the German-speaking area (CODE-GER) questionnaire.DesignWithin the validation study of the questionnaire ‘Care of the Dying Evaluation’ (CODETM) GER, loved ones were asked to comment (free text) in parallel on each item of the CODE-GER. These free-text notes were analysed with the qualitative content analysis method by Philipp Mayring.Setting/participantsLoved ones of patients (n=237), who had died an expected death in two university hospitals (palliative and non-palliative care units) during the period from April 2016 to March 2017.Results993 relevant paragraphs were extracted out of 1261 free-text notes. For loved ones, important aspects of quality of care are information/communication, respect of the patient’s and/or loved one’s will, involvement in decision-making at the end of life (patient’s volition) and having the possibility to say goodbye.ConclusionsIt is important for loved ones to be taken seriously in their sorrows, to be informed, that the caregivers respect the patients’ will and to be emotionally supported.Trial registration numberThis study was registered at the German Clinical Trials Register (DRKS00013916).

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