Objectif : Montrer que les unités de soins palliatifs (USP) s’intègrent dans une prise en charge globale du patient en proposant l’accès à de nombreuses techniques non médicamenteuses.
Introduction : Les USP sont des structures spécialisées en soins palliatifs, destinées aux patients les plus complexes. Ces unités proposent l’intervention d’équipes pluridisciplinaires afin de prendre en charge de façon globale le patient. À cette fin, nous pouvons penser que les USP proposent l’accès à des techniques non médicamenteuses. À ce jour, il n’existe pas d’état des lieux de ces pratiques. Le but de notre étude est de faire un état des lieux des pratiques non médicamenteuses dans les USP en France en 2019.
Matériel et méthodes : Nous avons réalisé une analyse descriptive, non exhaustive, proposée à l’ensemble des USP de France. Nous avons analysé le nombre de techniques non médicamenteuses proposées par chaque USP, en fonction du personnel réalisant le soin (intervention d’un personnel extérieur ou membre de l’équipe soignante médicale ou paramédicale).
Résultats : La totalité des 57 USP répondantes propose l’accès à au-moins une technique non médicamenteuse. En moyenne, 8,58 techniques non médicamenteuses sont proposées par USP. Certaines techniques non médicamenteuses sont pratiquées majoritairement par des intervenants extérieurs à l’USP, d’autres techniques par le personnel médical ou paramédical de l’USP, ou sont réalisées de façon mixte.
Discussion : Toutes les USP répondantes proposent l’accès à au-moins une technique non médicamenteuse, de façon multidisciplinaire. La prise en charge des patients est globale car elle prend en compte les symptômes physiques, psychologiques, sociaux et spirituels.
Deep brain stimulation (DBS) is an implanted neurological device effective in treating motor symptoms of Parkinson disease (PD), such as tremor, rigidity, and bradykinesia. More than 150,000 patients worldwide have been implanted DBS, including its continued benefit or potential complications, yet, no published articles provide guidance for hospice providers regarding the management of DBS devices in end-of-life care. With contributions from hospice physicians, a neurosurgeon, and ethicists, this article provides recommendations to adress clinical and ethical challenges in optimizing DBS for patients with PD nearing the end of life.
Social workers provide unique knowledge and psychosocial skills for seriously ill patients and their family. Clinicians often collaborate with social workers when caring for seriously ill patients. In fact, the Medicare Hospice Benefit and the National Consensus Project (NCP) for Quality Palliative Care state that social workers are a core member of a hospice or palliative care (PC) interdisciplinary team (IDT). This Fast Fact will discuss the role of the hospice and palliative care social worker.
Ce recueil de lettres témoigne de six années de rencontres hebdomadaires de l'auteur avec les patients de l'unité de soins palliatifs de l'hôpital de La Seyne-sur-Mer. Illustrés d'oeuvres réalisées par Michel Cadéo, ces échanges révèlent la profondeur intérieure de personnes en fin de vie prises en charge dans cet établissement.
Purpose: To assess the accuracy of hospice staff in predicting survival of subjects admitted to hospice, exploring the factors considered most helpful by the hospice staff to accurately predict survival.
Methods: Five physicians and 11 nurses were asked to predict survival at admission of 827 patients. Actual and predicted survival times were divided into = 1 week, 2–3 weeks, 4–8 weeks, and = 2 months and the accuracy of the estimates was calculated. The staff members were each asked to score 17 clinical variables that guided them in predicting survival and we analyzed how these variables impacted the accuracy.
Results: Physicians’ and nurses’ accuracy of survival of the patients was 46% and 40% respectively. Survival was underestimated in 20% and 12% and overestimated in 34% and 48% of subjects. Both physicians and nurses considered metastases, comorbidities, dyspnea, disability, tumor site, neurological symptoms, and confusion very important in predicting patients’ survival with nurses assigning more importance to intestinal symptoms and pain too. All these factors, with the addition of cough and/or bronchial secretions, were associated with physicians’ greater accuracy. In the multivariable models, intestinal symptoms and confusion continued to be associated with greater predictive accuracy. No factors appreciably raised nurses’ accuracy.
Conclusions: Some clinical symptoms rated as relevant by the hospice staff could be important for predicting survival. However, only intestinal symptoms and confusion significantly improved the accuracy of physicians’ predictions, despite the high prevalence of overestimated survival.
Purpose: Social support is an important factor in reducing caregiver burden, however, accessing social support via traditional means is often challenging for family caregivers of hospice patients. Online support groups may offer an effective solution. The present study sought to understand dynamics of online social support among family and other informal (e.g., friends) caregivers of hospice cancer patients in an online social support group. The primary aim of the study was to identify types of online social support and support-seeking behaviors, with a secondary aim to understand informal hospice caregivers’ preferences for social support.
Method: Data used in this study were collected as part of a federally funded randomized clinical trial of an informal hospice cancer caregiver support intervention. Findings are based on directed and conventional content analysis of support group members' posts and comments—including text and images—and a sample of caregivers’ exit interviews.
Results: Analyses demonstrated that the majority of online support provided by group members was emotional support, followed by companionship support, appraisal support, and informational support. Instrumental support was rarely provided. Support was primarily elicited in an indirect manner through self-disclosure and patient updates, with few overt requests for support.
Conclusions: Findings suggest online social support groups can be a valuable resource for informal caregivers who are in need of emotional support and lack the ability to access face-to-face support groups. Clinical implications of this research to healthcare systems regarding the importance of incorporating nurses and other medical professionals as co-facilitators of online support groups are discussed.
PURPOSE OF REVIEW: This review was undertaken to analyze the main reasons behind the limited development of hospice care in China, and to put forward some suggestions.
RECENT FINDINGS: Although the Chinese government has increased its support for hospice care in recent years, however, owing to the lack of education around hospice care and the heavy influence of the traditional Chinese Confucian concept of "filial piety," many individuals resist hospice care. Moreover, due to impaired patient rights, inadequate composition of hospice care teams, unbalanced geographical distribution, and limited service range, the development of hospice care in China is hindered. Hospice care education and continued training should be popularized and the government should strengthen the legal structure of the medical system to protect the rights of patients, families, and medical staff to promoting social support for hospice care. Through graded diagnosis and referral systems in medical institutions to integrate medical resources and expand the range of hospice care services.
AIM: To characterize episodic breathlessness (EB) in patients with advanced cancer, and to determine factors influencing its clinical appearance.
METHODS: A consecutive sample of advanced cancer patients admitted to an acute palliative care unit was surveyed. Continuous dyspnea and EB were measured by a numerical scale. The use of drugs used for continuous dyspnea and EB was recorded. Patients were asked about the characteristics of EB (frequency, intensity, duration and triggers). The Multidimensional dyspnea profile (MDP), the Brief dyspnea inventory (BDI), the Athens sleep scale (AIS) and the Hospital Anxiety and Depression Scale (HADS) were also administered.
RESULTS: From 439 advanced cancer patients surveyed, 34 and 27 patients had EB, without and with background dyspnea, respectively. The mean intensity and the number of episodes were higher in patients with background dyspnea (p < 0.0005 and p = 0.05, respectively). No differences in duration were observed. Most episodes lasted <10 min. A recognizable cause triggering EB was often found. The presence of both background dyspnea and EB was associated with higher values of MDP and BDI. EB was independently associated with frequency and intensity of background dyspnea (OR = 20.9, 95% CI (Confidence interval) 9.1-48.0; p < 0.0005 and OR = 1.97, 95% CI 1.09-3.58; p = 0.025, respectively) and a lower Karnofsky level (OR = 0.96, 95%CI 0.92-0.98, p = 0.05).
DISCUSSION: EB may occur in patients with and without continuous dyspnea, and is often induced by physical and psychological factors. EB intensity is higher in patients with continuous dyspnea. The duration was often so short that the use of drugs, as needed, may be too late, unless administered pre-emptively when the trigger was predictable.
Purpose: Unexpected death occurred in an unexpectedly high proportion of advanced cancer patients in the acute palliative care unit (APCU) setting and associated with fewer signs of impending death. Recognition of patients at high risk of approaching death, especially immediately after admitting APCU among clinicians, can improve the end-of-life trajectory. Our objective was accurate prognostication within a few days of admission.
Methods: Patients admitted to an APCU of the NTT Medical Center Tokyo, Tokyo, Japan, between April 2009 and December 2016 were retrospectively examined. The Glasgow Prognostic Score (GPS) was optimized with concomitant neutrophilia, lymphocytopenia, thrombocytopenia, anemia, and monocytosis. Kaplan-Meier survival curves were estimated, and independent predictors for 3-day mortality were identified using univariate and multivariate analyses. The sensitivity, specificity, and likelihood ratios (LRs) associated with imminent death were also assessed.
Results: Nine hundred ninety-one patients were included; 52.9% was male. The median age was 72 years. The median survival was 13 days (IQ range 6 to 26), and 11.7% died within 3 days of admission. Significant difference in survival with a GPS of 2 was observed in GPS optimized with concomitant thrombocytopenia, and it was the only significant predictor associated with 3-day mortality (p = 0.004), which had high specificity (> 95%) and high positive LR (> 5).
Conclusion: The prognostic value of the GPS was enhanced by adding thrombocytopenia. The concurrent use of the GPS and platelet count improved the prognostication of limited time of survival and could assist in the personal and clinical decisions for advanced cancer patients.
CONTEXT: The impact of hospice care services on the utilisation of life-sustaining treatments during end-of-life care in terminally ill patients has not been extensively studied.
OBJECTIVES: To determine the impact of hospice care services on the utilisation of life-sustaining treatments during the last three months of life among cancer patients.
METHODS: This nationwide population-based cohort study identified adults with cancer diagnosis from the Taiwan Registry for Catastrophic Illness, 2006-2016. Life-sustaining treatments included cardiopulmonary resuscitation, intubation, mechanical ventilation support, nasogastric tube feeding, and total parenteral nutrition. Hospice care services consisted of hospice inpatient care, hospice-shared care, and hospice home care. The association of hospice care services with the utilisation of life-sustaining treatments was determined using multiple logistic regression.
RESULTS: Of 516,409 cancer patients, 310,722 (60.2%) patients utilised life-sustaining treatments during the last three months of life. After adjusting for covariates, patients with hospice care services were less likely to receive life-sustaining treatments during the last 3 months of life than those without the services (adjusted odds ratio [AOR]=0.70, 95% confidence interval [CI]: 0.69-0.71). While type of life-sustaining treatments considered, hospice care services were associated with a lower likelihood of receiving cardiopulmonary resuscitation (AOR=0.125, 95% CI: 0.118-0.131), endotracheal intubation (AOR=0.204, 95% CI: 0.199-0.210), mechanical ventilation support (AOR=0.265, 95% CI: 0.260-0.270), nasogastric tube feeding (AOR=0.736, 95% CI: 0.727-0.744), and total parenteral nutrition (AOR=0.86, 95% CI: 0.84-0.88).
CONCLUSION: Hospice care services were associated with a lower likelihood of receiving life-sustaining treatments during the last three months of life in cancer patients.
PURPOSE: Creative arts therapies aim to expand conventional palliative care interventions by making clinical care more holistic. The objective of the present study was to evaluate the benefits of an art therapy intervention in a tertiary hospital palliative care unit, directly in adult cancer inpatients and indirectly in their relatives.
METHODS: We evaluated the intensity of pain, anxiety, depression and well-being using the Edmonton Symptom Assessment Scale (ESAS) before and after the first, third and fifth art therapy sessions. After the 3rd and 5th sessions, perceived helpfulness was assessed via a questionnaire developed by the palliative care team, combining open-ended questions and a checklist. We categorized the narrative data into three pre-determined types: generally helpful (some positive experience), helpfulness related to a dyadic relationship (patient-art therapist) and helpfulness related to a triadic relationship (patient-image-art therapist).
RESULTS: We observed a significant reduction in anxiety, depression and pain, and a significant increase in well-being at each of the time points evaluated. Ninety-eight percent of the patients considered the art therapy helpful, which could be categorized as generally helpful in 54.8%, related to a triadic relationship in 32.9%, and to a dyadic relationship in 12.3%. Relatives gave similar opinions regarding the effects on patients and, in addition, reported an indirect helpful effect for themselves. The most frequently selected experiences from the checklist were feeling calm, being entertained, and expressing and communicating emotions.
CONCLUSION: This art therapy intervention was beneficial in reducing symptom intensity. Almost all the participants directly or indirectly involved in the creative art process considered it helpful. They reported a wide variety of sensory, emotional, cognitive, and spiritual experiences.
BACKGROUND: Compared to Whites, racial/ethnic minorities are less likely to enroll in hospice and if they enroll, more likely to experience poor quality care. Building cultural competence (CC) among hospice staff is a strategy that may reduce disparities.
OBJECTIVE: To describe the state of CC training across hospices.
DESIGN: National survey of hospices' practices to promote CC.
RESULTS: A total of 197 hospices participated; most were not-for-profit (80%) with an average daily census less than 100 (47%); 73% offered staff cultural competence training (CCT). There were no differences in characteristics of hospices who offered CCT and those that did not. Of hospices offering CCT, 61% held it annually. Most trainings were 1 hour (60%); content was delivered via web (58%) and/or lecture (58%). While over 90% of staff (i.e., nurses, social workers, chaplains) completed CCT, a smaller proportion of medical directors (64%), senior leaders (71%) and board members (26%) did so. Most common topics were: cross-cultural communication, death/illness beliefs, spirituality's role, and healthcare disparities. The majority focused on African-Americans (83%), Hispanics (76%), and Asians (62%)-the most common U.S. minority groups. Almost 30% reported no effectiveness assessment of CCT, while 51% reported a quiz at the end of training. Most hospices offered some CCT.
CONCLUSIONS: CCT has been shown to improve healthcare providers' knowledge and skills in caring for diverse patients and it is associated with increased patient satisfaction. Future research should evaluate effectiveness of CCT in improving the ability of hospices to deliver high quality end-of-life care to diverse groups of older adults.
BACKGROUND: Few studies have specifically addressed quality of life issues for elderly hospice patients. The purpose of this study is to explore various factors and service patterns of the quality of life of end-of-life care for the elderly.
METHODS: We collect the data and make small-scale exploratory study via semi-structured individual interviews. Data were collected from the family of 2 elderly cancer patients receiving hospice services, and the data were analyzed qualitatively.
RESULTS: After investigation, we found that elderly people in hospice care, regardless of age, are suffering from physical and psychological pain and do not want to spend the rest of their lives in the hospital, but want to die in their own homes.
CONCLUSIONS: Both hospitalization and in-home care can improve resource utilization, and the key is to find various factors affecting the quality of life. Improving the quality of life is what patients and their families need most.
As the world has rightfully focused on COVID-19 people have continued to die of other things, and their needs and the needs of their loved ones have been overshadowed by the pandemic. My mother died of stage IV pancreatic cancer on April 25, 2020 in New York City (NYC).
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BACKGROUND: A large number of the hospice patients have been reported to be with symptoms of pain. Thus, managing the patient's pain is one aspect of hospice care provision. The delivery of pain care services could be facilitated through effective communication. However, little has been done to explore the interactional details of the delivery of pain care services in palliative care.
METHODS: Conversation analysis is a useful method to explore the interactional details of interaction by hospice care providers and terminally ill patients. Using the method of Conversation Analysis (CA), this study aims to demonstrate how the hospice care provider employs different types of interactional practices to address the patient's pain concerns. The data showed in this study are collected from the Alexander St website http://ctiv.alexanderstreet.com , an educational resource presenting a large collection of psycho-therapeutic videos.
RESULTS: In this study, an illustrative analysis is demonstrated to show the potential of conversation analysis for research on pain talk in palliative care. It has been shown that conversation analysis could contribute to unfolding the interactional details regarding "pain talk" in hospice care settings. Specifically, conversation analysis could provide a detailed description and interpretation of the conversational practices, which are used to construct hospice care provider participation in delivering pain talk. In addition, conversation analysis could also demonstrate the interactional resources by which patients disclose their experiences of physical or spiritual pain to the hospice care provider and the way how the hospice care provider responds to the patient's troubles talk or feelings talk.
CONCLUSIONS: This study identifies five types of interactional resources which are used to deal with the patient's pain concerns in hospice care setting. A conversation analytical study of pain talk in hospice care could provide a turn-by-turn description of how the hospice care provider communicates with the terminally ill patient in terms of the patient's pain concerns. The findings in this study could inform how the hospice care provider initiates, delivers and develops a pain talk with the terminally ill patient effectively.
BACKGROUND: Patients with advanced kidney disease are less likely than many patients with other types of serious illness to enroll in hospice. Little is known about real-world clinical decision-making related to hospice for members of this population.
METHODS: We used a text search tool to conduct a thematic analysis of documentation pertaining to hospice in the electronic medical record system of the Department of Veterans Affairs, for a national sample of 1000 patients with advanced kidney disease between 2004 and 2014 who were followed until October 8, 2019.
RESULTS: Three dominant themes emerged from our qualitative analysis of the electronic medical records of 340 cohort members with notes containing hospice mentions: (1) hospice and usual care as antithetical care models: clinicians appeared to perceive a sharp demarcation between services that could be provided under hospice versus usual care and were often uncertain about hospice eligibility criteria. This could shape decision-making about hospice and dialysis and made it hard to individualize care; (2) hospice as a last resort: patients often were referred to hospice late in the course of illness and did not so much choose hospice as accept these services after all treatment options had been exhausted; and (3) care complexity: patients' complex care needs at the time of hospice referral could complicate transitions to hospice, stretch the limits of home hospice, and promote continued reliance on the acute care system.
CONCLUSIONS: Our findings underscore the need to improve transitions to hospice for patients with advanced kidney disease as they approach the end of life.
The translation of evidence-based interventions into routine hospice care is impeded by numerous barriers, including a disconnect between research priorities and clinical care. To inform the development of a more practice-informed agenda for hospice intervention research, our team conducted a qualitative descriptive study, posing the following research questions: 1) How do hospice staff members describe their most significant work-related challenges? and 2) What regulatory changes do hospice staff members report would most improve hospice care? To answer these research questions, we interviewed 22 hospice staff members and then conducted a template analysis of the interview content. In doing so, we identified themes that described challenges in 5 key areas: time, documentation, professional roles, recruitment and retention, and burn-out. In addition, we identified a perceived need among hospice staff members for more regulatory flexibility and clarity. Based on our findings, we conclude that a practice-informed agenda for hospice intervention research includes the development and testing of interventions that increase efficiency, explicitly speak to the humanity of hospice care, and elevate the roles of all members of the interdisciplinary team.
BACKGROUND: Patients with advanced disease often overestimate their life expectancy, which potentially impacts decision making.
OBJECTIVE: To examine the nature and source of hospice patients' life expectancy estimates, about which little is known.
DESIGN: Using semi-structured interviews, patients were asked to estimate their life expectancy and elaborate on their response.
SETTING/SUBJECTS: Participants were hospice patients (n = 20, 55% male; 60% cancer).
MEASUREMENT: We conducted thematic analysis using open and focused coding.
RESULTS: Many participants had difficulty answering the life expectancy question and expressed uncertainty about when they would die. One-third overestimated their length of life relative to actual survival. The most common source of patients' prognostic beliefs was knowledge about their body, including physical symptoms and change over time. Half of patients reported that a provider had given them a prognostic estimate, and one-third agreed with, or gave estimates consistent with, the provider's estimate. Some patients said providers do not know prognosis or that time of death was unknowable.
CONCLUSIONS: Key findings were that 1) many hospice patients had difficulty estimating life expectancy, and 2) hospice patients' life expectancy estimates were frequently based on their body and not on information from medical providers. These findings have implications for measuring prognostic awareness, as valid assessment is a necessary component of determining whether prognostic awareness is beneficial for patients. Future research should examine how life expectancy estimates are associated with well-being and whether results extend to larger samples of patients with advanced disease not in hospice.
Patients with hematologic malignancies are thought to receive more aggressive end-of-life (EOL) care and have suboptimal hospice use compared with patients with solid tumors, but descriptions of EOL outcomes from comprehensive cohorts have been lacking. We used the population-based Surveillance, Epidemiology, and End Results-Medicare dataset to describe hospice use and indicators of aggressive EOL care among Medicare beneficiaries who died of hematologic malignancies in 2008-2015. Overall, 56.5% of decedents used hospice services for median 9 days (interquartile range, 3-27), 33.0% died in an acute hospital setting, 36.8% had an intensive care unit (ICU) admission in the last 30 days of life, and 13.3% received chemotherapy within the last 14 days of life. Hospice use was associated with 96% lower probability of inpatient death (adjusted risk ratio [aRR], 0.038; 95% confidence interval [CI], 0.035-0.042), 44% lower probability of an ICU stay in the last 30 days of life (aRR, 0.56; 95% CI, 0.54-0.57), and 62% decrease in chemotherapy use in the last 14 days of life (aRR, 0.38; 95% CI, 0.35-0.41). Hospice enrollees spent on average 41% fewer days as inpatient during the last month of life (adjusted means ratio, 0.59; 95% CI, 0.57-0.60) and had 38% lower mean Medicare spending in the last month of life (adjusted means ratio, 0.62; 95% CI, 0.61-0.64). These associations were consistent across histologic subgroups. In conclusion, EOL care quality outcomes and hospice enrollment were suboptimal among older decedents with hematologic cancers, but hospice use was associated with a consistent decrease in aggressive care at EOL.
Background: The characteristics of physician communication with patients at the end of life (EOL) in East Asia have not been well studied. We investigated physicians' communications with imminently dying patients with cancer and their families in palliative care units (PCUs) in Japan, South Korea, and Taiwan.
Methods: This observational study included patients with cancer newly admitted and deceased during their first admission to 39 PCUs in three countries. We evaluated 1) the prevalence and timing of informing patients and families of patients' impending death and 2) the prevalence of communication to assure the families of the patient's comfort.
Results: We analyzed 2138 patients (Japan: 1633, South Korea: 256, Taiwan: 249). Fewer Japanese (4.8%: 95% confidence interval [95% CI], 3.8%–5.9%) and South Korean (19.6%: 95% CI, 15.2%–25.0%) patients were informed of their impending death, whereas 66.4% (95% CI, 60.2%–72.1%) of Taiwanese were informed; among all three countries, =90% of families were informed. Although most patients in all three countries and the families in South Korea and Taiwan were informed of the impending death greater than or equal to four days before death, 62.1% (95% CI, 59.6%–64.6%) of Japanese families were informed less than or equal to three days prior. Most families in all three countries received assurance that the patient would remain comfortable (could hear until death, no distress with death rattle or respiration with mandibular movement).
Conclusions: Physicians in Taiwan communicated about patient's impending death most frequently, and physicians in all three countries generally provided assurance to families that the patients would remain comfortable. Further studies should explore the reasons for these differences and the effects of such communications in East Asia.