For many patients, notably among elderly nursing home residents, no plans about end-of-life decisions and palliative care are made. Consequently, when these patients experience life-threatening events, decisions to withhold or withdraw life-support raise major challenges for emergency healthcare professionals. Emergency department premises are not designed for providing the psychological and technical components of end-of-life care. The continuous inflow of large numbers of patients leaves little time for detailed assessments, and emergency department staff often lack training in end-of-life issues. For prehospital medical teams (in France, the physician-staffed mobile emergency and intensive care units known as SMURs), implementing treatment withholding and withdrawal decisions that may have been made before the acute event is not the main focus. The challenge lies in circumventing the apparent contradiction between the need to make immediate decisions and the requirement to set up a complex treatment project that may lead to treatment withholding and/or withdrawal. Laws and recommendations are of little assistance for making treatment withholding and withdrawal decisions in the emergency setting. The French Intensive Care Society (Société de Réanimation de Langue Française, SRLF) and French Society of Emergency Medicine (Société Française de Médecine d'Urgence, SFMU) tasked a panel of emergency physicians and intensivists with developing a document to serve both as a position paper on life-support withholding and withdrawal in the emergency setting and as a guide for professionals providing emergency care. The task force based its work on the available legislation and recommendations and on a review of published studies.
Patients at end of life often express a desire to travel, and many have requests that go unfulfilled. Studies show that a majority of patients have a desire to return to their place of birth to die when presented with the option, yet goals-of-care conversations do not routinely include travel desires for numerous reasons. Patients faced with a life-limiting illness are at greater risk of depression, withdrawal, denial, anger, and feelings of helplessness. When palliative care teams assist patients with end-of-life travel, they empower them with a greater sense of control over the dying process. Improving goals-of-care conversations regarding medical travel begins with well-developed communication skills and a knowledge of available options. This article primarily focuses on the recommendation of medical travel as a goals-of-care comfort measure for the palliative care patient.
Over the past several years, pediatric critical care units increasingly count on the expert advisement of palliative care specialists. Given the limited availability of pediatric palliative care specialists, all palliative care clinicians may be required to care for pediatric patients and their families. Special considerations in caring for these patients include the relative importance of prognosis, involvement of child life, music and pet therapy, incorporation of parents in end-of-life rituals, care for siblings, use of medical technology, and prolonged duration of stay. The following top 10 tips provide recommendations for caring for seriously ill infants, children, adolescents, and the families of these critically ill pediatric patients. They are written by pediatric intensive care providers to address common issues around palliative care in intensive care units.
OBJECTIVES: To identify and synthesize available recommendations from scientific societies and experts on pain management at the end-of-life in the ICU.
DATA SOURCES: We conducted a systematic review of PubMed, EMBASE, the Cochrane Database of Systematic Reviews, and Biblioteca Virtual en Salud from their inception until March 28, 2019.
STUDY SELECTION: We included all clinical practice guidelines, consensus statements, and benchmarks for quality.
DATA EXTRACTION: Study selection, methodological quality, and data extraction were performed independently by two investigators. A quality assessment was performed by four investigators using the Appraisal of Guidelines for Research and Evaluation II instrument. The recommendations were then synthesized and categorized.
DATA SYNTHESIS: Ten publications were included. The Appraisal of Guidelines for Research and Evaluation II statement showed low scores in various quality domains, especially in the applicability and rigor of development. Most documents were in agreement on five topics: 1) using a quantitative tool for pain assessment; 2) administering narcotics for pain relief and benzodiazepines for anxiety relief; 3) against prescribing neuromuscular blockers during withdrawal of life support to assess pain; 4) endorsing the use of high doses of opioids and sedatives for pain control, regardless of the risk that they will hasten death; and 5) using quality indicators to improve pain management during end-of-life in the ICU.
CONCLUSIONS: In spite of the lack of high-quality evidence, recommendations for pain management at the end-of-life in the ICU are homogeneous and are justified by ethical principles and agreement among experts. Considering the growing demand for the involvement of palliative care teams in the management of the dying patients in the ICU, there is a need to clearly define their early involvement and to further develop comprehensive evidence-based pain management strategies. Based on the study findings, we propose a management algorithm to improve the overall care of dying critically ill patients.
PURPOSE OF REVIEW: The palliative care population is a complex and heterogeneous one. While transfusion therapy is a readily available intervention for many patients, inadequate knowledge for accurately identifying which patient subsets at end-of-life will benefit from a transfusion, along with an unclear understanding of the magnitude of attendant risks of transfusion in those receiving palliative care, complicates the risk-benefit assessment of this therapy. In this brief review, the current literature surrounding transfusion of red cells and platelets in the palliative care patient population will be reviewed and recommendations provided.
RECENT FINDINGS: Benefits of transfusion therapy include subjective relief of fatigue and dyspnea, and improved sense of wellness, amongst other findings. However, these responses are not durable and there are currently no validated, objective metrics that correlate with symptomatic improvements. It is clear that transfusion-associated adverse reactions are underestimated in those receiving palliative care, with reaction rates similar to the general patient population. Additionally, based on the high mortality rates reported soon after transfusion, the impact of these blood components must be considered as an exacerbating or causative factor of mortality when evaluating declining condition or death. Hematinics are rarely assessed in anemic palliative care patients or, when measured, are often not corrected. The decision to transfuse palliative care patients is multifactorial, and benefits, risks, patient wishes, blood component inventories, and alternatives to transfusion should all be considered. There are many unknowns regarding transfusion in palliative care. Critical next steps for optimizing blood component therapy in this population include high-quality trials that help to identify validated measures of objective functional changes that parallel patient-reported outcomes and subsets of patients receiving end-of-life care that will most likely be positively impacted by transfusion therapy.
PURPOSE: The Palliative Care Study Group of the Multinational Association for Supportive Care in Cancer formed a subgroup to develop evidence-based recommendations on the management of constipation in patients with advanced cancer.
METHODS: These recommendations were developed in accordance with the MASCC Guidelines Policy. A search strategy for Medline was developed, and the Cochrane Database of Systematic Reviews and the Cochrane Central Register of Controlled Trials were explored for relevant reviews/trials respectively. The recommendations were categorised by the level of evidence and a "category of guideline" based on the level of evidence (i.e. "recommendation", "suggestion", or "no guideline possible").
RESULTS: The group produced 15 recommendations, with varying levels of evidence and so varying categories of guideline. The recommendations relate to the assessment, the treatment, and the re-assessment of constipation.
CONCLUSIONS: These recommendations provide a framework for the management of constipation in advanced cancer, although every patient needs individualised management.
AIM: The purpose of the present study was to collate examples of end-of-life care guidelines from various counties, examine their contents, and gain an overall picture of how end-of-life care guidance is offered to physicians and care providers internationally.
METHODS: In this study, eight researchers worked independently to source and examine national-level end-of-life care guidelines from different countries and regions. Data collected by each researcher were gathered into a unified table. The items in the table included basic information (publisher, year, URL etc.) and more specific items, such as the presence/absence of legal information and family's role in decision-making. These data were then used to identify trends, and examine the mechanics and delivery of guidance on this topic.
RESULTS: A total of 54 guidelines were included in the study. All the guidelines were published between 2000 and 2016, and 60% (n = 33) were published after 2012. The length of the guidelines varied from two to 487 pages (median 38 pages), and had different target audiences - both lay and professional. A total of 38 (70%) of the guidelines included information about the relevant laws and legal issues, 47 (87%) offered advice on withholding and withdrawing treatment, 46 (85%) discussed the family's role in decision-making and 46 (85%) emphasized the teamwork aspect of care.
CONCLUSIONS: The present findings show that end-of-life care guidelines are generally made reactively in response to the trend toward patient-centered care, and that to create effective guidelines and implement them requires multilevel cooperation between governmental bodies, healthcare teams, and patients and their families.
AIMS AND OBJECTIVES: To evaluate the availability of, adherence to, and perceived usefulness of guidelines and protocols for managing hydration and subcutaneous hydration in palliative care settings.
BACKGROUND: Hydration at the end of life and the use of a subcutaneous route to hydrate generate some controversy among health professionals for different reasons. Having guidelines and protocols to assist in decision making and to follow a standard procedure may be relevant in clinical practice.
DESIGN: Cross-sectional telephone survey, with closed-ended and open-ended questions designed specifically for this study.
METHODS: Data were obtained from 327 professionals, each from a different palliative care service. Mean, standard deviation, minimum and maximum were calculated for continuous variables; frequency distributions were obtained for categorical variables. A qualitative content analysis was performed on the open-ended questions. The article adheres to the STROBE guidelines for reporting observational studies.
RESULTS: Only 24.8% of the participants had guidelines available to assist in making decisions regarding hydration, and 55.6% claimed to follow them "always or almost always". Of the participants, 38.8% had subcutaneous hydration protocols available, while 78.7% stated that they "always or almost always" followed these protocols. The remaining participants considered the protocols useful tools despite not having them available.
CONCLUSIONS: Only 25% of the participants' services had guidelines for hydration, and less than 40% had protocols for subcutaneous hydration. However, adherence was high, especially in cases where protocols existed. Among the participants who did not have guidelines and protocols, attitudes were mostly favourable, but mainly as a reference and support for an individualized clinical practice.
RELEVANCE TO CLINICAL PRACTICE: Guidelines and protocols on hydration in palliative care may be more useful as a solid reference and support for individualized practice than as instruments for standardizing care. From this perspective, their development and availability in palliative care services are recommended.
Background: The goal of the 4th edition of the National Consensus Project Clinical Practice Guidelines for Quality Palliative Care (NCP Guidelines) is to improve access to quality palliative care for all people with serious illness regardless of setting, diagnosis, prognosis, or age.
Objective: The NCP Guidelines are intended to encourage and guide healthcare organizations and clinicians (including nonpalliative care specialists) across the care continuum to integrate palliative care principles and best practices into their routine assessment and care of all seriously ill patients and their family caregivers.
Methods: The NCP Guidelines formalize and delineate evidence-based processes and practices for the provision of safe and reliable high-quality palliative care for adults, children, and families with serious illness in all care settings.
Results: This article presents the key domains and guidelines of the 4th edition.
Hospice care emerged in mainland China in 1988, 30 years ago, but its development since that time has been slow. In 1994, the Ministry of Health listed hospice care into the Catalogue of Diagnostic and Therapeutic Subjects of Medical Institutions, but the public’s awareness of hospice and palliative care and the supply of it are still limited. Large numbers of people still die in acute hospitals. In recent years, hospice and palliative care has witnessed rapid development: in February 2017, the State Health Planning Commission issued a guideline for hospice care, which began to promote the work of hospice care nationwide. In May of 2019, the second batch of national pilot work on hospice care were chosen, 71 regions including whole area of Shanghai are being involved in developing local hospice care service.
Background: Current guidelines recommend considering deactivation of cardiac implantable electronic devices (CIEDs) in patients nearing death. We evaluated the implementation of this recommendation in unselected deceased individuals with CIEDs.
Methods: Over a 7-month period in 2016, all deceased persons taken to the Rostock crematorium were prospectively screened for CIEDs and these were interrogated in situ. Pacing rate, pacing mode, and lead output were documented as well as patient data including location and time of death. In implantable cardioverter-defibrillators (ICDs), tachycardia therapy adjustment and occurrence of shocks 24 h prior to death were also recorded.
Results: We examined 2297 subjects, of whom 154 (6.7%) had CIEDs. Of these subjects, 125 (100%) pacemakers (PMs) and 27 (96.4%) ICDs were eligible for analysis. Death in persons with ICDs occurred most frequently in hospital (55.6%), while this was less frequently the case for individuals with PMs (43.2%). Furthermore, 33.3% of subjects with ICDs and 18.5% with PMs died in palliative care units (PCU). Shock therapies were switched off in three (60%) individuals with ICDs who died in the PCU, whereas antibradycardia therapy was not withdrawn in any PM patient in the PCU. Therapy withdrawal occurred in two patients with PMs (1.3%) who died in hospital. Patients with PMs had high ventricular pacing rates at the last interrogation (69 ± 36.0%) and often suffered atrioventricular block (39.2%). Six (25%) of the 24 active ICDs presented shocks near the time of death.
Conclusion: Many CIED patients died in hospital; nonetheless, in practice, CIED deactivation near death is rarely performed and might be less feasible in subjects with PMs. However, there is still a need to consider deactivation, especially in individuals with ICDs, as one fourth of them received at least one shock within 24 h prior to death.
In 2010, the Institute of Medicine published the vision for how to transform healthcare to achieve a more seamless patient-centered, high-quality system of care. Among the recommendations were four specifically focused on leveraging nursing which is the largest group of healthcare workers: (1) Ensure that nurses can practice to the full extent of their education and training, (2) Improve nursing education, (3) Provide opportunities for nurses to assume leadership positions and to serve as full partners in healthcare redesign and improvement efforts, and (4) Improve data collection for workforce planning and policy making. At the Care New England Health Care System's Visiting Nurse Association, located in the state of Rhode Island, we redesigned access to end-of-life care by leveraging these recommendations. An experienced palliative care nurse practitioner (NP) leads the program development to improve care delivered by home healthcare nurses and NP specialists. This program was designed to allow patients to remain in their preferred setting of care-their home-until the end of their life. In the 5 years of this program's existence, it has achieved a yearly impact on community-based palliative care and hospice services. The number of documented advance directives increased by 75%, referrals to palliative care and hospice increased by 300% and the length of time on hospice doubled. In addition, NP home visits became an accepted referral source and improvements in both the quality and satisfaction scores for the home healthcare agency were realized.
PURPOSE: The purpose of this systematic review is to assess if Do Not Resuscitate (DNR) orders should be routinely rescinded during anesthesia, determine if consensus on retaining DNR orders exists in the literature, and explore the current state of clinical practice.
DESIGN: This systematic review followed preferred reporting items for systematic reviews and meta-analyses guidelines.
METHODS: In June 2018, the Cumulative Index to Nursing and Allied Health Literature and PubMed databases were systematically searched using defined inclusion/exclusion criteria.
FINDINGS: Ninety-one articles from the databases were pooled with 16 works identified as formative to the research questions. Forty-nine articles were analyzed and included in this study.
CONCLUSIONS: It is unethical to automatically rescind DNR orders during anesthesia. Patients have the right to retain their DNR orders unaltered or modify them for the perianesthesia period. Sufficient evidence exists to create meaningful policy at every level. A consensus exists among professional organizations that the standard of care is a required reconsideration of DNR orders before anesthesia.
Palliative care (PC) seeks to improve the quality of life for patients facing serious illness. Several oncology organizations have guidelines about PC, reflecting the need to integrate PC into standard oncology care. Many surgical patients do not receive PC despite the need for these services and established surgical PC competencies. Recent educational and research efforts reveal increased appreciation of the need and benefit of integrating PC services with cancer care in general, and surgical care, specifically.
Objectives: To present and discuss the views of researchers at an academic palliative care research centre on research encounters with terminally ill patients in the home setting and to generate a list of recommendations for qualitative researchers working in palliative and end-of-life care.
Methods: Eight researchers took part in a consensus meeting to discuss their experiences of undertaking qualitative interviews. The researchers were of varying backgrounds and all reported having experience in interviewing terminally ill patients, and all but one had experience of interviewing patients in their home environment.
Results: The main areas discussed by researchers included: whether participation in end-of-life research unintentionally becomes a therapeutic experience or an ethical concern; power relationships between terminally ill patients and researchers; researcher reflexivity and reciprocity; researchers' training needs. Qualitative methods can complement the home environment; however, it can raise ethical and practical challenges, which can be more acute in the case of research undertaken with palliative and patients at the end-of-life.
Conclusions: The ethical and practical challenges researchers face in this context has the potential to place both participant and researcher at risk for their physical and psychological well-being. We present a set of recommendations for researchers to consider prior to embarking on qualitative research in this context and advocate researchers in this field carefully consider the issues presented on a study-by-study basis.
Objectives: Around the world, the PICU is one of the most common sites for hospitalized children to die. Although ensuring the best possible care experience for these children and their families is important, clear recommendations for end-of-life and bereavement care, arising from the parents themselves, remain limited within current literature. This report aims to describe bereaved parents' recommendations for improvements in end-of-life care and bereavement follow-up when a child dies in intensive care.
Design: Thematic analysis of incidental data from a larger grounded theory study.
Setting: Four Australian PICUs.
Subjects: Twenty-six bereaved parents participated in audio-recorded, semi-structured interviews in 2015-2016. Interviews explored their experiences of having a child die in intensive care and their experiences of end-of-life care and bereavement follow-up. Data pertaining to this report were analyzed via thematic analysis.
Measurements and main results: Bereaved parents identified several areas for care delivery and improvement across three time periods: during hospitalization; during the dying phase; and during bereavement. During hospitalization, parents' recommendations focused on improved communication, changes to the physical environment, better self-care resources, and provision of family support. During the dying phase, parents suggested private, demedicalized rooms, familiar staff members, and support to leave the hospital. Recommendations for care after death focused mainly on the provision of ongoing support from the hospital or local bereavement services, as well as improved information delivery.
Conclusions: Findings from this study offer many concrete recommendations for improvements in care both during and after a child's death. These recommendations range from simple practice changes to larger organizational modifications, offering many potential avenues for change and improvement both on an individual healthcare provider level and within individual PICUs.
Despite its many benefits, hospice care is underused for patients with heart failure. This paper discusses the factors contributing to this underuse and offers recommendations to optimise use for patients with heart failure and proposes metrics to optimise quality of hospice care for this patient group.
OBJECTIVES: Report the use of an objective tool, UK Gold Standards Framework (GSF) criteria, to describe the prevalence, recognition and outcomes of patients with palliative care needs in an Australian acute health setting. The rationale for this is to enable hospital doctors to identify patients who should have a patient-centred discussion about goals of care in hospital.
DESIGN: Prospective, observational, cohort study.
PARTICIPANTS: Adult in-patients during two separate 24h periods.
MAIN OUTCOME MEASURES: Prevalence of in-patients with GSF criteria, documentation of treatment limitations, hospital and 1 year survival, admission and discharge destination and multivariate regression analysis of factors associated with the presence of hospital treatment limitations and 1 year survival.
RESULTS: Of 626 in-patients reviewed, 171 (27.3%) had at least one GSF criterion, with documentation of a treatment limitation discussion in 60 (30.5%) of those patients who had GSF criteria. Hospital mortality was 9.9%, 1 year mortality 50.3% and 3-year mortality 70.2% in patients with GSF criteria. One-year mortality was highest in patients with GSF cancer (73%), renal failure (67%) and heart failure (60%) criteria. Multivariate analysis revealed age, hospital length of stay and presence of the GSF chronic obstructive pulmonary disease criteria were independently associated with the likelihood of an in-hospital treatment limitation. Non-survivors at 3 years were more likely to have a GSF cancer (25% vs 6%, p=0.004), neurological (10% vs 3%, p=0.04), or frailty (45% vs 3%, p=0.04) criteria. After multivariate logistic regression GSF cancer criteria, renal failure criteria and the presence of two or more GSF clinical criteria were independently associated with increased risk of death at 3 years. Patients returning home to live reduced from 69% (preadmission) to 27% after discharge.
CONCLUSIONS: The use of an objective clinical tool identifies a high prevalence of patients with palliative care needs in the acute tertiary Australian hospital setting, with a high 1 year mortality and poor return to independence in this population. The low rate of documentation of discussions about treatment limitations in this population suggests palliative care needs are not recognised and discussed in the majority of patients.
TRIAL REGISTRATION NUMBER: 11/121.
Palliative care concentrates on preventing and relieving suffering by reducing the severity of disease symptoms. Consistent treatment of pain and distress must therefore be an integral component of every palliative care concept. In this review non-pharmacological and pharmacological measures for pain and distress management in the context of palliative neonatal care are summarised. Furthermore, recommendations are given focusing on two special palliative neonatal care settings: compassionate extubation and withdrawing artificial nutrition and hydration.
BACKGROUND: Speech-language pathologists (SLPs) are often called upon to assess swallowing function for older adults with advanced dementia at high risk of aspiration and make recommendations about whether the patient can safely continue oral nutrition.
OBJECTIVE: To describe the circumstances under which SLPs recommend oral nutritional intake for these patients.
METHODS: A mail survey of a national probability sample of SLPs (n = 731). Speech-language pathologists were asked if there were circumstances in which they would recommend oral feeding for patients with advanced dementia at high risk of aspiration, and if yes, to describe the circumstances under which they do so.
RESULTS: Six themes emerged: (1) when patient preferences are known; (2) for quality of life near end of life; (3) if aspiration risk mitigation strategies are employed; (4) if physician's preference; (5) if aspiration risk is clearly documented and acknowledged; and (6) if SLP is knowledgeable about current evidence of lack of benefit of feeding tubes in advanced dementia or that nothing by mouth status will not necessarily prevent aspiration pneumonia.
CONCLUSIONS: Speech-language pathologists have an important role within the interprofessional team in assessing swallowing in patients with advanced dementia, advising family and hospital staff about risks and benefits of oral feeding, and the safest techniques for doing so, to maximize quality of life for these patients near the end of life. Speech-language pathologists are often faced with balancing concerns about aspiration risk and recommending the more palliative approach of oral feeding for pleasure and comfort, potentially creating moral distress for the SLP.