Palliative day care: a qualitative study of service users' experiences in the United Kingdom

In many countries, specialist palliative day care for patients with life-limiting conditions is provided by specific teams of professionals from a range of relevant disciplines. During 2006 to 2007, the day care services at a hospice in the U.K. were redesigned so that specialist palliative care sessions replaced the existing long-established, traditional day care model. The purpose of this study was to enhance the understanding of those aspects of the service that the users valued most (the "X-factor"). Qualitative data were collected via semistructured interviews with 29 patients and eight carers. These data were subjected to a framework analysis. The users of the service used poignant and powerful words to describe the special qualities that they valued, some phrasing it as the X-factor. The data are presented under three themes: the quality of the staff; the sense of community; and relationships. Of these, the relationships between and within the staff and patient groups held the greatest significance for the patients. Service providers need to recognize that opportunities for the formation of relationships between the patients, staff, and carers are of utmost importance when designing palliative day care services.     

Development and Assessment of a Measure of Parent and Child Needs in Pediatric Palliative Care

Context

Pediatric palliative care has no evidence-based needs assessment measure. The Parent and Child Needs Survey (PCNeeds) is a new instrument designed to assess the needs of children in palliative care, including children receiving end-of-life care, and their families.

养老机构护理员临终关怀知识、态度、行为现状及其影响因素

目的探讨养老机构护理员临终关怀知识、态度、行为现状及其影响因素。方法 2016年1-5月,便利抽样法选择宁波市20所养老机构的351名养老护理员为研究对象。采用临终关怀知识、态度及行为量表对其进行调查,分析养老护理员临终关怀知识、态度、行为现状及其影响因素。结果养老护理员临终关怀知识、态度、行为评分分别为(0.65±0.15)、(3.47±0.23)、(3.96±0.60)分。不同学历、工作年限的养老护理员,其临终关怀知识评分差异均有统计学意义(均P0.05);不同年龄、职称、家庭型态、临终关怀知识来源及临终关怀知识总均分的养老护理员,其临终关怀态度评分差异均有统计学意义(均P0.05);不同家庭型态、临终关怀知识来源及临终关怀态度评分的养老护理员,其临终关怀行为评分差异亦有统计学意义(均P0.05)。学历和工作年限是养老护理员临终关怀知识评分的主要影响因素;年龄、职称、家庭型态、临终关怀知识来源、临终关怀知识是养老护理员临终关怀态度评分的主要影响因素;家庭型态、临终关怀知识来源和临终关怀态度是养老护理员临终关怀行为评分的主要影响因素(均P0.05)。结论养老机构护理员的临终关怀知识水平较低,临终关怀知识来源渠道局限,应重视养老护理员的临终关怀教育培训。     

Music Therapy in Hospice and Palliative Care: a Review of the Empirical Data

Although music therapy is an established allied health professionand is used with increasing frequency in the treatment of thosewith a terminal illness, there is a real dearth of empiricalresearch literature supporting the use of music therapy in end-of-lifecare. This article reviews the empirical studies found in theliterature and documents the emergence of an evidenced-basedapproach to the use of music therapy in hospice and palliativecare. A total of 11 studies are reviewed; of these, six showsignificant differences supporting the use of music therapyin this area. Dependent variables positively affected by musictherapy include pain, physical comfort, fatigue and energy,anxiety and relaxation, time and duration of treatment, mood,spirituality and quality of life. Guidelines for future researchare considered, and variables that need to be controlled arepresented. The need to create an evidence-based approach tohospice and palliative care music therapy is articulated, andfuture researchers are empowered to continue to conduct investigationsamong this population.     

Reflections on the History of Occupational Stress in Hospice/Palliative Care

The concept of hospice and palliative care emerged a quarter of a century ago out of recognition of the unmet needs of dying persons and the social issues of the 1960s and 1970s. The issues of the day included the sexual revolution; a questioning of social values; an increased awareness of death resulting from the murder of the Kennedy brothers and Martin Luther King and daily television exposure to deaths in the Vietnam War, feminism, consumerism, reclaiming a more humanized role in the birth process, and hence in the process of death. The history of the hospice movement and the stress experienced by staff is traced from the early developmental days through to the present. Initially there was sometimes a struggle to integrate the concepts of relief of physical symptoms with meeting the psychosocial and emotional needs of patients and families, caregivers were expected to sacrifice much of their personal life for work, emotional intensity was high and supports were developed to ease some of the stress experienced by caregivers. From the early days team stress and burnout have been issues of concern. In the 1980s issues involved establishing funding sources, dealing with the new crisis of AIDS, and dealing with the gap between the ideal and the real. In the 1990s the economic climate has escalated some of the tensions that have always existed as hospice attempts to position itself within mainstream care with diminishing fiscal resources. These are issues that confront us as we move into the next century. [Article copies available for a fee from The Haworth Document Delivery Service: 1-800-342-9678. E-mail address: getinfo@haworthpressinc.com <Website: http://www.haworthpressinc.com?>?]     

The Impact of Specialty Palliative Care in Pediatric Oncology: A Systematic Review

ContextChildren with cancer and their families have complex needs related to symptoms, decision-making, care planning, and psychosocial impact extending across the illness trajectory, which for some includes end of life. Whether specialty pediatric palliative care (SPPC) is associated with improved outcomes for children with cancer and their families is unknown.ObjectiveWe conducted a systematic review following PRISMA guidelines to investigate outcomes associated with SPPC in pediatric oncology with a focus on intervention delivery, collaboration, and alignment with National Quality Forum domains.MethodsWe searched PubMed, Embase, Scopus, Web of Science, and CINAHL databases from inception until April 2020 and reviewed references manually. Eligible articles were published in English, involved pediatric patients aged 0-18 years with cancer, and contained original data regarding patient and family illness and end-of-life experiences, including symptom management, communication, decision-making, quality of life, satisfaction, and healthcare utilization.ResultsWe screened 6682 article abstracts and 82 full-text articles; 32 studies met inclusion criteria, representing 15,635 unique children with cancer and 342 parents. Generally, children with cancer who received SPPC had improved symptom burden, pain control, and quality of life with decreased intensive procedures, increased completion of advance care planning and resuscitation status documentation, and fewer end-of-life intensive care stays with higher likelihood of dying at home. Family impact included satisfaction with SPPC and perception of improved communication.ConclusionSPPC may improve illness experiences for children with cancer and their families. Multisite studies utilizing comparative effectiveness approaches and validated metrics may support further advancement of the field.     

Provision of Palliative and Hospice Care to Children in the Community: A Population Study of Hospice Nurses

Context

Approximately 500,000 children in the United States suffer from life-limiting illnesses each year, many of whom are hospice eligible each year. Few hospice agencies, however, offer formal pediatric programs.

Safe and Appropriate Use of Methadone in Hospice and Palliative Care: Expert Consensus White Paper

Methadone has several unique characteristics that make it an attractive option for pain relief in serious illness, but the safety of methadone has been called into question after reports of a disproportionate increase in opioid-induced deaths in recent years. The American Pain Society, College on Problems of Drug Dependence, and the Heart Rhythm Society collaborated to issue guidelines on best practices to maximize methadone safety and efficacy, but guidelines for the end-of-life scenario have not yet been developed. A panel of 15 interprofessional hospice and palliative care experts from the U.S. and Canada convened in February 2015 to evaluate the American Pain Society methadone recommendations for applicability in the hospice and palliative care setting. The goal was to develop guidelines for safe and effective management of methadone therapy in hospice and palliative care. This article represents the consensus opinion of the hospice and palliative care experts for methadone use at end of life, including guidance on appropriate candidates for methadone, detail in dosing, titration, and monitoring of patients' response to methadone therapy.     

Improving Hospice and Palliative Care Through Nurse Practitioner Engagement in a Community Paramedicine Program

More than 80% of Americans would prefer to die at home, but only 20% do. Paramedics have a role in caring for terminally ill patients, especially when involved in a community setting. A knowledge gap was noted with community paramedics (CPs) regarding end-of-life questions and palliative care for paramedics. This evidence-based quality improvement project aimed to provide structured, evidence-based palliative and hospice education to CPs. Nurse practitioners can provide education and training on palliative and hospice care to CPs and help patients remain at home.     

Hospice and Palliative Medicine: A Novel Subspecialty of Emergency Medicine

Background: Emergency Medicine (EM) is a resuscitative discipline where the major focus in teaching and practice is to rapidly diagnose, stabilize, and initiate curative therapy. Thus, it may seem counterintuitive to have Hospice and Palliative Medicine (HPM), a specialty often perceived as a last resort measure “when no more can be done” for the patient, included as the latest subspecialty of EM. Objective: We discuss the scope of practice and the role of HPM in the emergency department (ED) to clarify some commonly held misconceptions. Discussion: HPM principles are frequently applied in ED patient care. EM clinicians routinely rely on many of the same skills that are refined and advanced by HPM when treating symptoms, facilitating goals of care discussions, communicating bad news, and integrating the treatment of the physical, psychological, and social suffering in patient care. The HPM approach to care is patient-centered as opposed to disease-centered, with a focus on the relief of distressing symptoms to improve the quality of life. This parallels ED care, where priority is given to alleviate distressing symptoms such as acute pain or vomiting, regardless of the underlying disease process. In fact, EM is one specialty in which we may submit a bill purely based on an International Classification of Diseases-9^th Revision symptom code. Conclusion: In this article we explore the background of HPM; outline the principles and core skills of HPM that are applicable to the daily practice of EM; and explore the pathway, now available, towards a subspecialty certification.     

Missed Opportunities: Integrating Palliative Care into the Emergency Department for Older Adults Presenting as Level I Triage Priority from Long-Term Care Facilities

Background

Early integration of palliative care from the emergency department (ED) is an underutilized care modality with potential benefits, but few studies have identified who is appropriate for such care.

Palliative care in nursing homes: exploring care assistants' knowledge

Aim.  To explore the level of palliative care knowledge and to identify educational needs of care assistants (CAs) working within a nursing home context.
Background.  In the United Kingdom (UK) many patients at the end-of-life are admitted to (or reside in) nursing homes, where they receive care from unqualified CAs who have little formal training. Mandatory training in specific skills to meet palliative care needs are absent.
Method.  Questionnaire to CAs in 48 of 91 private nursing homes in one UK region.
Findings.  A population of 1135 CAs were targeted with a response rate of 45% ( n  = 508). A high proportion of CAs in this sample required information about the philosophy and principles of palliative care. Results support the need for an educational initiative to improve palliative care in nursing homes.
Conclusion.  Although recognized as a common place of death for older people, CAs are often unprepared to provide end-of-life care to nursing home residents. It is recommended that attention be given towards developing the skills and knowledge of this staff group.     

Palliative Care as a Primary Therapeutic Approach in Advanced Dementia: A Narrative Review

PurposeThe goal of this narrative review was to identify and summarize the ways in which palliative care could benefit patients who have advanced dementia.MethodsThis case-based discussion article examines current literature on palliative care for dementia.FindingsDementia is an incurable, progressive disease that affects millions of subjects. The prevalence has grown in the last decade and is projected to continue on this trajectory. In the later stages of dementia, subjects require increasing levels of care due to severe cognitive and functional impairment. Although the field of palliative medicine focuses on improving the quality of life of patients with life-limiting illnesses, many patients with advanced dementia do not receive palliative care services.ImplicationsPalliative care has been shown to improve patient and caregiver satisfaction, quality of life, and symptom burden at the end of life. Patients with advanced dementia would benefit from increased access to palliative care.     

癌症儿童的姑息护理

为提高癌症儿童中晚期的生存质量,结合癌症患儿的生理及心理特点提出姑息护理应给癌症患儿及家属提供综合性服务,其中包括基础护理、症状护理、心理护理、丧亲及情感支持。     

Palliative sedation in a specialized unit for acute palliative care in a cancer hospital: comparing patients dying with and without palliative sedation

Palliative sedation is undergoing extensive debate. The aims of this study were to describe the practice of palliative sedation at a specialized acute palliative care unit and to study whether patients who received palliative sedation differed from patients who did not. We performed a systematic retrospective analysis of the medical and nursing records of all 157 cancer patients who died at the acute palliative care unit between 2001 and 2005. Palliative sedation, defined as continuous deep sedation prior to death, was used for 43% of all deceased patients. In 87% of the sedated patients, it was started in the last two days before death. Sedated and nonsedated patients did not differ in survival after admission (eight days vs. seven days, P = 0.12). Sedated patients were younger (55 years vs. 59 years, P = 0.04) and more often had malignancies of the digestive tract (P < 0.01). In both groups, common symptoms at admission were pain (79% vs. 87%, P = 0.23), constipation, (40% vs. 48%, P = 0.46), and dyspnea (32% vs. 29%, P = 0.77). On the day that palliative sedation was started, sedated patients more often suffered from dyspnea and delirium than nonsedated patients at a comparable day before death. The most important indications for palliative sedation were terminal restlessness (60%) and dyspnea (46%). We conclude that at the studied acute palliative care unit, patients who ultimately received palliative sedation did not have symptoms different than nonsedated patients at admission, but on the day at which the sedation was started, they suffered more often from delirium and dyspnea.     

Palliative Ultrasound for Home Care Hospice Patients

The evolving relationship between emergency and palliative medicine is expected to benefit patients of each. Two collaborative care encounters involving home hospice patients are discussed. Portable bedside ultrasound was performed in the home to diagnose ascites and to guide palliative paracentesis. Specific interventions and outcomes are reported. The interface of emergency and palliative care and the use of paracentesis in cancer palliation are briefly reviewed. It is concluded that home‐performed ultrasound and ultrasound‐guided procedures are promising palliative modalities for care at the end of life. ACADEMIC EMERGENCY MEDICINE 2010; 17:293–296 © 2010 by the Society for Academic Emergency Medicine