INTRODUCTION AND AIM: Palliative care in patients with advanced heart failure is strongly recommended by Clinical Practice Guidelines. We aimed to calculate the prevalence of advanced heart failure in admitted patients, to describe their management, and to analyse the factors that influence their referral to specialised palliative care.
PATIENTS AND METHODS: Cross-sectional, multicentre study that consecutively included patients admitted for heart failure in 74 Spanish hospitals. If they met criteria for advanced heart failure, their treatment, complications and procedures were recorded.
RESULTS: A total of 3153 patients were included. Of them, 739 (23%) met criteria for advanced heart failure. They were more likely to be women, older and to have a history of anaemia, chronic kidney disease and cognitive impairment. For their management, furosemide infusions (30%) and vasodilators (21%) were used. Refractory symptoms were treated with opioids (47%) and benzodiazepines (44%). Palliative care was only provided in the last hours of life in 48% of them. A multidisciplinary approach, involving palliative care specialists was sought in 15% of these patients. Treatment with furosemide infusions, an advanced New York Heart Association functional class, to meet advanced HF criteria and the presence of cancer were associated with the referral to specialised palliative care.
CONCLUSIONS: Almost one in four patients admitted with HF met criteria of advanced disease. They were older and had more comorbidities. Specialist palliative care services were involved in only a minority of patients, mainly those who were highly symptomatic or had cancer.
BACKGROUND: Recognizing and managing existential suffering remains challenging. We present two cases demonstrating how existential suffering manifests in patients and how to manage it to alleviate suffering.
CASE DESCRIPTION: Case 1: A 69-year-old man with renal cell carcinoma receiving end-of-life care expressed fear of lying down "as he may not wake up." He also expressed concerns of not being a good Christian. Supportive psychotherapy and chaplain support were provided, with anxiolytic medications as needed. He was able to express his fear of dying and concern about his family, and Edmonton Symptom Assessment System scores improved. He died peacefully with family at bedside. Case 2: A 71-year-old woman presented with follicular lymphoma and colonic obstruction requiring nasogastric drain of fecaloid matter. Initially, she felt that focusing on comfort rather than cure symbolized giving up but eventually felt at peace. Physical symptoms were well-controlled but emotionally she became more distressed, repeatedly asking angrily, "Why is it taking so long to die?." She was supported by her family through Bible readings and prayers, but she was distressed about being a burden to them. An interdisciplinary approach involving expressive supportive counseling, spiritual care, and integrative medicine resulted in limited distress relief. Owing to increasing agitation, the patient and family agreed to titrate chlorpromazine to sedation. Her family was appreciative that she was restful until her death.
CONCLUSION: Existential suffering manifests through multiple domains in each patient. A combination of pharmacologic and non-pharmacologic techniques may be needed to relieve end-of-life suffering.
But de l’étude : La possibilité de passer sa fin de vie chez soi est un enjeu de santé publique qui répond à la demande de la population et aux contraintes du système de santé. L’organisation de l’offre de soins et des acteurs infirmiers est donc centrale dans le développement des soins palliatifs à domicile. L’objectif de cette étude était de décrire la place des différents acteurs de soins infirmiers dans la prise en charge des situations palliatives avancées et terminales à domicile.
Matériel et méthodes : Une enquête de pratique a été réalisée au moyen d’un questionnaire en ligne auprès des médecins généralistes installés en Gironde. Le repérage des situations palliatives était réalisé avec le "Supportive & Palliative Care Indicators Tool" en version française (SPICT-FR™).
Résultats : En tout 89 médecins ont décrit la prise en charge de 607 patients en situations palliatives avancées et terminales en cours de suivi, et celle de 260 patients décédés à domicile au cours des 12 derniers mois à l’issue d’une pathologie en situation palliative. Les infirmiers libéraux assuraient, seuls, 64 % de l’ensemble des prises en charge en cours, et 56 % de celles le mois précédant le décès. Ils intervenaient également dans la majorité des situations où les infirmiers des services d’hospitalisation à domicile et des services de soins infirmiers à domicile étaient présents.
Conclusion : Alors que la représentation commune tend à considérer l’infirmier du service d’hospitalisation à domicile comme l’acteur majoritaire des situations palliatives avancées et terminales à domicile, cette enquête montre que les infirmiers libéraux ont une place prépondérante dans ces situations. Le développement des soins palliatifs à domicile et de la culture palliative passera par une meilleure reconnaissance et le soutien de ces acteurs.
Introduction : L’anémie est un problème fréquemment rencontré chez les patients relevant des soins palliatifs. Elle peut être responsable de nombreux symptômes inconfortables comme l’asthénie, la dyspnée ou des douleurs. L’objectif de cette étude était d’analyser la prise en charge de l’anémie par les praticiens d’équipe mobile de soins palliatifs et d’unité de soins palliatifs.
Méthode : Une étude observationnelle, déclarative et descriptive, a été menée de septembre à décembre 2017, sur la base d’un questionnaire électronique, adressé aux médecins d’équipe mobile de soins palliatifs et d’unité de soins palliatifs en France métropolitaine. Le recueil concernait l’indication, le choix du traitement, la méthode de surveillance et le recours à des référentiels.
Résultats : Nous avons recueilli les réponses de 140 médecins. Parmi ces praticiens, 87 % traitaient l’anémie des patients relevant de soins palliatifs uniquement en cas de symptômes et 95 % n’avaient recours à aucun référentiel. Les symptômes amenant le plus à traiter l’anémie étaient la dyspnée et l’asthénie. Le traitement utilisé en première intention par 95 % des répondeurs était la transfusion de concentré de globules rouges, essentiellement pour le besoin d’une efficacité plus rapide.
Conclusion : Les praticiens ayant répondu à notre questionnaire ont déclaré en majorité ne pas avoir recours à des référentiels concernant la prise en charge de l’anémie, mais leurs pratiques se rapprochaient des rares recommandations et données disponibles sur le sujet. De nouvelles études sont nécessaires sur ce sujet et plus précisément sur l’utilisation des agents stimulants l’érythropoïèse et sur la correction des carences vitaminiques et martiales.
Background: Malignant fungating wounds occur in advanced cancer patients, often in the last 6 to 12 months of life, when malignant cells breach the skin, causing a non-healing wound. Little is known about the perspectives of clinicians who treat these patients or how collaboration is facilitated among different specialties.
Objective: To understand the experiences and perceived roles of clinicians who treat patients with malignant fungating wounds from a multidisciplinary perspective.
Design: A qualitative study using narrative interviews was conducted and data was analyzed to identify themes that encompass the experiences of clinicians who treat patients malignant fungating wounds and put these experiences in a temporal context.
Setting/subjects: Ten clinicians who treat patients with malignant fungating wounds (n = 10) from various metropolitan research hospitals were interviewed. The clinicians were of different disciplines, including physicians and nurses, and different specialties, including palliative care, oncology, and wound care.
Results: Three themes emerged that described how clinicians of varying disciplines and specialties understood their roles and navigated the transition from curative to palliative care for patients with malignant fungating wounds: (1) making the best of fragmented care (2) collaboration between oncology and wound care (3) transitioning from curative to palliative care.
Conclusion: Findings of the study present a timeline of clinical care for patients, with different specialties taking the lead at different points in clinical time. Recognizing when collaboration between specialties is essential, as well as when communication fails, or clinicians have differing perspectives is important to facilitate the best care possible for patients.
BACKGROUND: There has been a rapid increase in the number of residential care/assisted living communities (RC/AL) that allow residents to die in place. The objective of this study was to examine the organizational characteristics of RC/AL communities that are associated with facility-level policies supportive of admitting and retaining residents in need of end-of-life (EOL) care.
METHODS: We used cross-sectional data from the 2010 National Survey of Residential Care Facilities. Organizational characteristics included structural factors, staffing levels, and other relevant facility-level policies. We examined descriptive statistics, binomial and multivariable multinomial regression models to determine the likelihood of 1) admitting and retaining, or 2) only retaining, as compared to 3) neither admitting nor retaining AL residents in need of EOL care.
RESULTS: A majority of residential care facilities 73.7% (n = 22,642) reported admitting and retaining residents at EOL. Yet, levels of skilled nursing care were generally low with 60.9% of these RC/AL communities reporting that registered nurses were not available, including hospice staff. In multivariable, multinomial regression models, organizational characteristics such as skilled nursing, hands-on contact hours from personal care aides, and policies allowing exemptions to self-evacuation rules were associated with increased likelihood of RC/AL communities admitting/retaining residents in need of EOL care.
CONCLUSION: Despite overall low levels of skilled nursing care, a nationally representative survey revealed that a majority of RC/AL communities admit and retain residents in need of EOL care. Staffing and exemptions from self-evacuation policies appear to be central characteristics associated with the provision of these services in RC/AL communities.
Dans les établissements de soins, la prise en charge des patients décédés reste trop souvent une activité taboue. La chambre mortuaire est généralement située à l'écart, à peine fléchée parfois. On sait peu de choses sur ceux qui y travaillent, et il est rare qu'on leur donne la parole. Qui sont-ils ? D'où viennent-ils ? Comment sont-ils formés ? Pourquoi ont-ils choisi d'exercer en chambre mortuaire, d'y rester ? De quels types de récits sont-ils aujourd'hui porteurs ? En quoi ces récits seraient susceptibles de faire sens pour tout un chacun ?
Over 140,000 people in the United States have died as a result of infection with COVID-19. These patients have varying death experiences based on their location of death, the availability and utilization of various medical technologies, the amount of strain on the local health care system, the involvement of specialist palliative care (PC) teams, and access to essential medications to alleviate symptoms at the end of life. The objective of this report is to describe the death experiences of four patients cared for in an urban academic medical center who received very different degrees of medical interventions and to examine the interventions of our interdisciplinary PC team. We conclude that PC teams must adapt to this new landscape by creating best practices for ensuring adequate symptom control, modifying approaches for withdrawal of life-sustaining medical technologies, and gaining facility with communication through teleconferencing platforms to meet the challenge of alleviating suffering for people dying from COVID-19.
We propose that the palliative care team response will occur in two ways: first, communication and second, symptom management. Our experience with discussing goals of care with the family of a COVID-positive patient highlighted some expected and unexpected challenges. We describe these challenges along with recommendations for approaching these conversations. We also propose a framework for proactively mobilizing the palliative care workforce to aggressively address goals of care in all patients, with the aim of reducing the need for rationing of resources.
Specialist palliative care services (SPCS) have a vital role to play in the global coronavirus disease 2019 pandemic. Core expertise in complex symptom management, decision making in uncertainty, advocacy and education, and ensuring a compassionate response are essential, and SPCS are well positioned to take a proactive approach in crisis management planning. SPCS resource capacity is likely to be overwhelmed, and consideration needs to be given to empowering and supporting high-quality primary palliative care in all care locations. Our local SPCS have developed a Palliative Care Pandemic Pack to disseminate succinct and specific information, guidance, and resources designed to enable the rapid upskilling of nonspecialist clinicians needing to provide palliative care. It may be a useful tool for our SPCS colleagues to adapt as we face this global challenge collaboratively.
INTRODUCTION: Patients with cancer are at high risk of developing pressure ulcers at the end of life as a result of their underlying condition or cancer treatment. There are many guidelines which set out best practice with regard to end-of-life skin care. However, the complexity of palliative cancer care often means that it is challenging for nurses to make the appropriate person-centred decisions about end-of-life skin care. This study seeks to explore the perceived importance that nurses place on different factors in their end-of-life skin care for patients with cancer. The utility, face validity and content validity of a prototype decision-making tool for end-of-life skin care will also be evaluated.
METHODS AND ANALYSIS: A mixed-method design will be used to gather data from primary and secondary care nurses working in different hospitals and local authority areas across Wales. Clinical vignettes will be used to gather qualitative and quantitative data from nurses in individual interviews. Qualitative data will be subject to thematic analysis and quantitative data will be subject to descriptive statistical analysis. Qualitative and quantitative data will then be synthesised, which will enhance the rigour of this study, and pertinently inform the further development of an end-of-life skin care decision-making tool for patients with cancer.
ETHICS AND DISSEMINATION: Ethical approval to undertake the study has been granted by Cardiff University School of Healthcare Sciences Research Governance and Ethics Screening Committee. Informed consent will be obtained in writing from all the participants in this study. The results of this study will be disseminated through journal articles, as well as presentations at national and international conferences. We will also report our findings to patient and public involvement groups with an interest in improving cancer care, palliative care as well as skin care.
BACKGROUND: Antimicrobials are frequently prescribed to terminally-ill patients with cancer; however, physicians' practice patterns regarding antimicrobial use vary widely. This study aimed to systematically identify factors that determine physicians' attitudes toward the management of infectious diseases in terminally-ill patients with cancer.
METHODS: A nationwide cross-sectional survey involving 600 oncologists, 600 infectious diseases physicians, 600 palliative care physicians, and 220 home care physicians was conducted between November 2017 and January 2018. The primary endpoint was physicians' attitudes toward the management of infectious diseases in terminally-ill patients with cancer with a few weeks of prognosis. Physicians' beliefs regarding management of infectious diseases as well as physician-perceived 'good death' were also assessed (1=strongly disagree-6=strongly agree).
RESULTS: There were 895 (44.3%) analyzable response, and average scores of physicians' attitudes ranged between 2.69 and 4.32 In total, 241 (27%; 95%CI=24-30) to 691 (78%; 95%CI=75-81) respondents showed proactive attitudes toward various infectious diseases management. In linear regression analysis, determinants of proactive attitudes included: physicians' belief that examination and treatment will improve quality of life and prognosis and reduce suffering (ß=0.32, t=9.99, p=0.00); greater physician-perceived importance on receiving enough treatment (ß=0.09, t=2.88, p=0.00) and less importance on dying a natural death (ß=-0.07, t=-2.14, p=0.03) for a 'good death'; working at a tertiary care hospital (ß=0.16, t=4.40, p=0.00); and not being a home care physician (ß=-0.20, t=-5.51, p=0.00) or palliative care physician (ß=-0.12, t=-3.64, p=0.00).
CONCLUSIONS: Physicians have divergent attitudes toward the management of infectious diseases in terminally-ill patients with cancer. Reflection by physicians on their own beliefs and perceptions regarding infectious disease management and a 'good death' may help provide the best end-of-life care.
Delirium occurs frequently at end of life. Palliative care clinical nurse specialists (CNSs) are involved in community palliative care provision. Many patients prefer being cared for at home, yet managing delirium in this setting presents unique challenges, potentially resulting in emergency hospital or hospice admission. We examined the experiences and practice of palliative care CNSs managing delirium in the community; 10 interviews were undertaken. Data were analysed using the framework approach. Challenges to delirium management in the community included limited time with patients, reliance on families and access to medications. Assessment tools were not used routinely; time limited visits and inconsistent retesting were perceived barriers. Management approaches differed depending on CNSs' previous delirium education. Strategies to prevent delirium were not used. Community delirium management presents challenges; support surrounding these could be beneficial. Routine assessment tool use and delirium prevention strategies should be included in further education and research.
Parkinson’s disease (PD) is a common neurodegenerative disorder, with a continuously increasing prevalence. With improved clinical and therapeutic management of PD, more patients reach later stages of the disease, meaning they may face new clinical problems that were not commonly approached. This gave way to the description of a new PD stage, late-stage PD (LSPD), which is clinically discernible from the advanced-stage one. Therefore, LSPD patients have new and different needs, regarding pharmacological and non pharmacological interventions, including palliative care and multidisciplinary teams. LSPD patients constitute an‘orphan population’, who traditionally was excluded from previous studies, due to its high disability. With this manuscript, we intend to review specific management challenges of LSPD patients, covering this new concept and its clinical features, how to assess these patients, therapeutic recommendations, as well as discussing ongoing research and future perspectives.
Du fait des multiples formes de la douleur, sa prise en charge est à géométrie variable. L’évaluation, son retentissement, son traitement, l’évaluation du bénéfice et les effets secondaires sont à chaque fois un modèle singulier.
Medical emergencies at the end of life require recognition of patients at risk, so that a comprehensive assessment and plan of care can be put in place. Frequently, the interventions depend on the patient's underlying prognosis, location of care, and goals of care. The mere presence of a medical emergency often rapidly changes an estimated prognosis. Education of the patient and family may help empower them to adequately handle many situations when clinicians are not available.
Palliative care is an important component of the medical response to pandemics and other health emergencies. The principles of palliative care do not change, but the practice of palliative care has to change as a result of factors such as greater demand and infection control measures. This article makes suggestions for palliative care provision during a pandemic (in developed countries), based on a limited review of the literature and personal experience of the ongoing pandemic (COVID-19 infection).
Balancing the risk of coronavirus disease 2019 (COVID-19) for patients with cancer and health-care workers with the need to continue to provide effective treatment and care is changing how oncology teams work worldwide. “The pandemic has meant a transformation of every aspect of cancer care, irrespective of treatment, inpatient or outpatient, and radical or palliative intent,” said James Spicer (Guy's and St Thomas' Hospital NHS Foundation Trust, London, UK).
Context: The COVID-19 pandemic is spreading across the world. Many patients will not be suitable for mechanical ventilation owing to the underlying health conditions, and they will require a conservative approach including palliative care management for their important symptom burden.
Objectives: To develop a management plan for patients who are not suitable for mechanical ventilation that is tailored to the stage their COVID-19 disease.
Methods: Patients were identified as being stable, unstable, or at the end of life using the early warning parameters for COVID-19. Furthermore, a COVID-19–specific assessment tool was developed locally, focusing on key symptoms observed in this population which assess dyspnoea, distress, and discomfort. This tool helped to guide the palliative care management as per patients' disease stage.
Results: A management plan for all patients' (stable, unstable, end of life) was created and implemented in acute hospitals. Medication guidelines were based on the limitations in resources and availability of drugs. Staff members who were unfamiliar with palliative care required simple, clear instructions to follow including medications for key symptoms such as dyspnoea, distress, fever, and discomfort. Nursing interventions and family involvement were adapted as per patients' disease stage and infection control requirements.
Conclusion: Palliative care during the COVID-19 pandemic needs to adapt to an emergency style of palliative care as patients can deteriorate rapidly and require quick decisions and clear treatment plans. These need to be easily followed up by generalist staff members caring for these patients. Furthermore, palliative care should be at the forefront to help make the best decisions, give care to families, and offer spiritual support.
Context: The COVID-19 pandemic created a rapid and unprecedented shift in our medical system. Medical providers, teams, and organizations have needed to shift their visits away from face-to-face visits and toward telehealth (both by phone and through video). Palliative care teams who practice in the community setting are faced with a difficult task: How do we actively triage the most urgent visits while keeping our vulnerable patients safe from the pandemic?
Measures: The following are recommendations created by the Palo Alto Medical Foundation Palliative Care and Support Services team to help triage and coordinate for timely, safe, and effective palliative care in the community and outpatient setting during the ongoing COVID-19 pandemic. Patients are initially triaged based on location followed by acuity. Interdisciplinary care is implemented using strict infection control guidelines in the setting of limited personal protective equipment (PPE) resources. We implement thorough screening for COVID-19 symptoms at multiple levels before a patient is seen by a designated provider.
Conclusions/Lessons Learned: We recommend active triaging, communication, frequent screening for COVID-19 symptoms for palliative care patients been evaluated in the community setting. An understanding of infection risk, mutual consent between designated providers, patients, and their families are crucial to maintaining safety while delivering community-based palliative care during the COVID-19 pandemic.