Les soins palliatifs demandent de plus en plus de compétences médicales, soignantes, humaines et éthiques, afin d’asseoir leur légitimité dans des domaines de plus en plus pointus de la médecine – réanimation, néonatalogie, cancérologie, gériatrie – ainsi que dans la diversité des prises en charge, y compris au domicile ou en EPHAD.
Dans ce contexte de développement des formations et d’élargissement des champs de compétences de la pratique palliative, cette 5e édition du manuel offre :
-les indispensables connaissances thérapeutiques ;
-les outils, à destination des professionnels en vue d’acquérir une compétence clinique pour la rencontre et l’accompagnement humain, psychique et relationnelle de la personne malade ;
-une contextualisation de la pratique des soins palliatifs dans leur dimension sociale, sanitaire et politique ;
-des jalons pédagogiques pour le développement des soins palliatifs dans leur dimension pédagogique et de recherche.
BACKGROUND: Palliative care has been identified as an area of low outpatient referral from our emergency department, yet palliative care has been shown to improve the quality of patient's lives.
AIM: This study investigates both provider and patient perspectives on palliative care for the purpose of identifying barriers to increased palliative care utilization within our healthcare system.
DESIGN: Two surveys were developed, one for patients/caregivers and one for healthcare providers.
SETTING/PARTICIPANTS: This was a single-center study completed at a quaternary academic emergency department. A survey was sent to emergency medicine providers with 47% response rate. Research staff approached Emergency Department patients who had been identified to be high risk to fill out paper surveys with 76% response rate.
RESULTS: Only 28% of patients had already undergone palliative care, with an additional 25% interested in palliative care. Nearly half of the patients felt that they needed more resources to prevent hospital visits. Patients identified low understanding of palliative care and difficulty accessing appointments as barriers to consultation. Among providers, 98% indicated that they had patients who would benefit from palliative care. A majority of providers highlighted patient understanding of palliative care and access to appointments as barriers to palliative care. Notably, 52% of providers reported that emergency medicine provider knowledge was a barrier to palliative care consultation.
CONCLUSIONS: Despite emergency department patients' self-identified need for resources and emergency medicine providers' recognition of patients who would benefit from palliative care, few patients receive palliative care consultation.
BACKGROUND: Historically, it has been assumed that the Emergency Department (ED) is a place for maximally aggressive care and that Emergency Medicine Providers (EMPs) are biased towards life-prolonging care. However, emphasis on early recognition of code status preferences is increasingly making the ED a venue for code status discussions (CSDs). In 2018, our hospital implemented a policy requiring EMPs to place a code status order (CSO) for all patients admitted through the ED. We hypothesized that if EMPs enter CSDs with a bias toward life-prolonging care, or if the venue of the ED biases CSDs towards life-prolonging care, then we would observe a decrease in the percentage of patients selecting DNR status following our institution's aforementioned CSO mandate.
METHODS: We present a retrospective analysis of rates of DNR orders placed for patients admitted through our ED comparing six-month periods before and after the implementation of the above policy.
RESULTS: Using quality improvement data, we identified patients admitted through the ED during pre (n=7,858) and post (n=8,069) study periods. We observed the following: after implementation DNR preference identified prior to hospital admission from the ED increased from 0.4% to 5.3% (relative risk (RR) 12.5; 95% CI: 5.2-29.9), defining CS in the ED setting at the time of admission increased from 2.4% to 98.6% (p <0.001), and DNR orders placed during inpatient admission was unchanged (RR=0.97 (95% CI = 0.88-1.07)).
DISCUSSION: Our results suggest that the ED can be an appropriate venue for CSDs.
Background: Although outpatient palliative care clinics (OPCCs) provide a venue for early, pre-emptive referral to palliative care on a routine basis, some patients will continue to require urgent referrals. The purpose of this study was to characterise these urgent referrals to determine whether they reflect clinical need or convenience.
Methods: We retrospectively compared new patients in an OPCC who were seen urgently versus those seen at routine appointments. Descriptive statistics compared the two groups in terms of clinical characteristics, referring teams, symptoms, performance status and outcomes. Logistic regression was used to identify factors associated with urgent referral to the OPCC. Overall survival was compared using the log-rank test.
Results: Between January 2016 and December 2017, a total of 113 urgent referrals were reviewed in the OPCC; these were compared with a random sample of 217 routine referrals. Patients seen urgently were more likely to be referred by surgical oncology, and to report worse symptom scores for pain (p=0.0007), tiredness (p=0.02), well-being (p=0.001), constipation (p=0.02) and sleep (p=0.01). More patients seen urgently required direct admission to hospital following the visit (17.7% vs 0.9%, p<0.001). Median survival was shorter for patients seen urgently (4.3 months, 95% CI 3.4 to 7.8) versus routinely (8.1 months, 95% CI 7.2 to 9.5).
Conclusions: Compared with routine referrals, new patients seen urgently in the OPCC had higher symptom burden, shorter median survival and a greater chance of direct admission to hospital. Palliative care clinics should consider how best to accommodate urgent referrals.
Background: Emergency departments are seeing an increase in acute exacerbations of chronic disease in the older-adult population. The delivery of palliative care in the emergency department can increase goal-concordant care at the end-of-life for this population. New interventions in palliative care for emergency medicine require large, pragmatic, complex health interventions due to the heterogeneous and dynamic environment of emergency departments. These complex interventions must balance fidelity with adaptability, while being rooted in theory, to produce an intervention that can be applied in a variety of contexts.
Methods: Primary Palliative Care for Emergency Medicine (PRIM-ER) is a large, pragmatic, complex health intervention. This paper outlines the conceptual theory-based design as well as the study form and functions of PRIM-ER to exemplify how this complex intervention has balanced fidelity with adaptability.
Results: A form and function matrix was created to highlight the key objectives and tailored intervention components of PRIM-ER. Each intervention component was also linked to one or more elements of the Theory of Planned Behavior to support provider behavior change and the delivery of palliative care services and referrals.
Conclusion: The application of theory and delineation of forms and functions, as well prospective adaptation monitoring of large complex interventions can support the balance of fidelity with adaptability to encourage successful interventions among a variety of clinical environments.
This issue of Medical Clinics, guest edited by Dr. Eric Widera, is devoted to Palliative Care. Articles in this important issue include: Hospice and palliative care: an overview; Goals of care conversations in palliative care: A practical guide; The art and science of prognostication in palliative care; Recognizing and managing polypharmacy in advanced illness; Pain management in those with serious illness; Management of grief, depression, and suicidal thoughts in those with serious illness; Management of respiratory symptoms in those with serious illness; Management of gastrointestinal symptoms inadvanced illness; Management of urgent medical conditions at the end of life; Delirium at the end of life; Options of last resort: palliative sedation, Physician aid in dying and voluntary cessation of eating and drinking; Cannabis for symptom management; and Self-care of physicians caring for patients with serious illness.
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 principles are increasingly within the scope of emergency medicine (EM). In EM, there remain untapped opportunities to improve primary palliative care (PC) and integrate patients earlier into the palliative continuum. However, the emergency department (ED) differs from other practice environments with its unique systemic pressures, priorities, and expectations. To build effective, efficient, and sustainable partnerships, palliative clinicians are best served by understanding the ED's practice priorities. The authors, each EM and Hospice and Palliative Medicine board certified and in active practice, present these 10 high-yield tips to optimize the ED consultation by PC teams.
Introduction: The aim of our study was to investigate challenges faced by emergency physicians (EPs) who provide prehospital emergency care to patients with advanced incurable diseases and family caregivers in their familiar home environment.
Methods: Qualitative study using semistructured interviews with open-ended questions to collect data from 24 EPs. Data were analyzed using qualitative content analysis.
Results: We identified nine categories of challenges: structural conditions of prehospital emergency care, medical documentation and orders, finding optimal patient-centered therapy, uncertainty about legal consequences, challenges at the individual (EP) level, challenges at the emergency team level, family caregiver's emotions, coping and understanding of patient's illness, patient's wishes, coping and understanding of patient's illness, and social, cultural, and religious background of patients and families. EPs strengthened that the integrations of specialized prehospital palliative care services improved emergency care by providing resources to patients and family caregivers, enhancing the quality and availability of medical documentation and accessibility of aftercare in emergencies. Areas of improvement that were identified were to promote emergency physicians' knowledge and skills in palliative care, communication, and family caregiver support by education and training. Furthermore, structures for better care on-site, thorough medical documentation, and specialized palliative care emergency facilities in hospital and prehospital care were requested.
Conclusion: Prehospital emergency care in patients with advanced incurable diseases in their familiar home environment may be improved by training EPs in palliative care, communication, and caregiver support competences. Results underline the importance of collaborative specialized palliative care and prehospital emergency care.
BACKGROUND: Research has shown that do not resuscitate (DNR) and do not intubate (DNI) orders may be construed by physicians to be more restrictive than intended by patients. Previous studies of physicians found that DNR/DNI orders are associated with being less willing to provide invasive care.
OBJECTIVES: The purpose of this study was to assess the influence of code status on emergency residents' decision-making regarding offering invasive procedures for those patients with DNR/DNI compared with their full code counterparts.
METHODS: We conducted a nationwide survey of emergency medicine residents using an instrument of 4 clinical vignettes involving patients with serious illnesses. Two versions of the survey, survey A and survey B, alternated the DNR/DNI and full code status for the vignettes. Residency leaders were contacted in August 2018 to distribute the survey to their residents.
RESULTS: Three hundred and three residents responded from across the country. The code status was strongly associated with decisions to intubate or perform CPR and influenced the willingness to offer other invasive procedures. DNR/DNI status was associated with less frequent willingness to place central venous catheters (88.2% for DNR/DNI vs. 97.2% for full code, p < 0.001), admit patients to the intensive care unit (89.9% vs. 99.0%, p < 0.001), offer dialysis (79.3% vs. 98.0%, p < 0.001), and surgical consultation (78.7% vs. 94.2%, p < 0.001).
CONCLUSIONS: In a nationwide survey, emergency medicine residents were less willing to provide invasive procedures for patients with DNR/DNI status, including the placement of central venous catheters, admission to the intensive care unit, and consultation for dialysis and surgery.
Primary palliative care education should be provided within prelicensure programs to maximize nurses’ preparation to care for patients with serious, life-limiting illness before entering professional practice settings. Curricula need to be assessed to identify current content integration across nursing programs. The specific aim of this feasibility study was to evaluate the effectiveness of a survey methodology to assess primary palliative care content integration within prelicensure nursing curricula in multiple programs. A secondary aim was to compare content integration across nursing programs. Faculty teaching in prelicensure courses at 3 accredited nursing programs were recruited to complete a 50-item curriculum assessment survey based on the End-of-Life Nursing Education Consortium Undergraduate Curriculum. Response rates were 73%, 26.7%, and 18.8%, respectively. All content areas were reported as being taught by at least 1 faculty member per institution. Lecture was the primary pedagogy to teach all End-of-Life Nursing Education Consortium Undergraduate content areas, followed by clinical conference/debriefing and simulation. Content was primarily taught in Critical Care, Maternity, Adult Health, Gerontology, and Fundamentals courses. The disparate response rates suggest that survey dissemination may prove ineffective for multisite curricula evaluation. Implications for nursing education and clinical practice will be discussed.
Introduction: Palliative care is recommended for patients with life-limiting illnesses; however, there are few standardized protocols for outpatient palliative care visits. To address the paucity of data, this article aims to: (1) describe the elements of outpatient palliative care that are generalizable across clinical sites; (2) achieve consensus about standardized instruments used to assess domains within outpatient palliative care; and (3) develop a protocol and intervention checklist for palliative care clinicians to document outpatient visit elements that might not normally be recorded in the electronic heath record.
Methods: As part of a randomized control trial of nurse-led telephonic case management versus specialty, outpatient palliative care in older adults with serious life-limiting illnesses in the Emergency Department, we assessed the structural characteristics of outpatient care clinics across nine participating health care systems. In addition, direct observation of outpatient palliative care visits, consultation from content experts, and survey data were used to develop an outpatient palliative care protocol and intervention checklist.
Implementation: The protocol and checklist are being used to document the contents of each outpatient palliative care visit conducted as a part of the Emergency Medicine Palliative Care Access (EMPallA) trial. Variation across palliative care team staffing, clinic session capacity, and physical clinic model presents a challenge to standardizing the delivery of outpatient palliative care.
Introduction: Studies show that home-based palliative care (HBPC) improves participant outcomes and satisfaction with care while also decreasing hospitalizations and emergency department visits. U.S. health care payment reforms create financial opportunities to offer HBPC. Consequently, more HBPC programs are emerging, heightening the need to evaluate their effectiveness.
Methods: This randomized, controlled trial is comparing the effectiveness of an evidence-based model of HBPC and enhanced usual primary care for participants who receive primary care from medical groups and clinics organized under an accountable care organization or Medicare Advantage plan. Palliative care services are reimbursed by our partnering health plan provider. The five-year trial will enroll 1155 seriously ill participants (and ~884 of their caregivers) with heart failure, chronic obstructive pulmonary disease, or advanced cancer. We are collecting data via telephone surveys with participants at baseline and one and two months postenrollment and with caregivers at baseline, one and two months postenrollments, and following the death of a loved one. We are collecting participant-reported outcome measures of pain, symptoms, anxiety, depression, participant-provider communication, and hope. Caregiver outcome measures include caregiver burden, communication with providers, anxiety, and depression. Additional outcomes are participant survival time and participants' emergency department visits and hospitalizations.
Study Implementation: Challenges and Contributions: Our research team has encountered several significant challenges in early study implementation. These include engaging primary care providers in the study and coordinating logistics with a health plan. Both challenges have contributed to a lag in participant enrollment. Despite these challenges, our study holds tremendous promise to accelerate adoption and spread of an evidence-based HBPC model across the country.
Introduction: For many patients, primary care is an appropriate setting for advance care planning (ACP). ACP focuses on what matters most to patients and ensuring health care supports patient-defined goals. ACP may involve interactions between a clinician and a patient, but for seriously ill patients ACP could be managed by a team.
Methods: We are conducting a cluster randomized trial comparing team-based to clinician-focused ACP using the Serious Illness Care Program (SICP) in 42 practices recruited from 7 practice-based research networks (PBRNs). Practices were randomized to one of the two models. Patients are referred to the study after engaging in ACP in primary care. Our target enrollment is 1260 subjects. Patient data are collected at enrollment, six months and one year. Primary outcomes are patient-reported goal-concordant care and days at home. Secondary outcomes include additional patient measures, clinician/team experience, and practice-level measures of SICP implementation.
Study Implementation: This trial was designed and is conducted by the Meta-network Learning and Research Center (Meta-LARC), a consortium of PBRNs focused on integrating engagement with patients, families, and other stakeholders into primary care research and practice. The trial pairs a comparative effectiveness study with implementation of a new program and is designed to balance fidelity to the assigned model with flexibility to allow each practice to adapt implementation to their environment and priorities. Our dissemination will report the results of comparing the two models and the implementation experience of the practices to create guidance for the spread of ACP in primary care.
Introduction: Varying intensity of advance care planning (ACP) interventions at the population level has not been compared among seriously ill patients in primary care. This project will implement, test, and disseminate real-world scalable ACP interventions among primary care clinics across three University of California Health systems. The three ACP interventions are (1) distribution of an advance directive (AD) with targeted ACP messaging, (2) the AD, messaging, plus prompting patients to engage with the Prepare For Your Care website (PREPARE), and (3) the AD, messaging, PREPARE, plus Care Coordinator engagement with patients and clinicians.
Methods: We will identify a population cohort of seriously ill primary care patients and implement the ACP interventions using electronic health record (EHR) patient portals and postal mailings. Forty-five clinics across the three health systems will be cluster randomized to one of the three ACP interventions. The primary outcome for the population cohort is AD or Physician Orders for Life-Sustaining Treatment documentation in the EHR. A subset of the population cohort will be surveyed to assess patient-centered outcomes, including care consistent with goals at baseline, 12 months, and 24 months. Caregivers will be interviewed if patients are unable to be surveyed or die. ACP documentation, goal concordant care, and among decedents, health care utilization will be compared among intervention arms.
Study Implementation: Challenges and Contributions: The project is guided by a Study Advisory Group and Community Advisory Groups at each site to ensure rigorous patient-centered methods and consistency of implementation. Intervention fidelity will be evaluated using the Reach, Efficacy, Adoption, Implementation, and Maintenance (RE-AIM) framework. Challenges to implementation of this three-site health system trial and to intervention fidelity stem from site/clinic/system cultures, increasing attention to end-of-life care from payers and regulators, and growing pressures by health systems to implement ACP interventions. Stakeholder engagement is required to ensure consistent interventions across sites.
Inadequate communication about serious illness care preferences affects patients, families, health care providers, and health care systems. Many patient and system barriers prevent comprehensive serious illness communication. The purpose of this evidence-based practice project was to provide a structure within a primary care clinic to facilitate conversations with seriously ill individuals about their care preferences that (a) was adaptable to clinic workflow, (b) improved providers’ perception of the care conversation experience, (c) improved documentation of care preferences, and (d) provided a comfortable and helpful experience. The Johns Hopkins Nursing Evidence-Based Practice model and Serious Illness Care Program were used to address provider and system barriers to conversations about care preferences. Program interventions included training providers and staff; identifying patients at risk for high symptom burden and mortality; integrating system interventions; and evaluating outcomes. Providers completed training, after which a 5-week pilot practice change was conducted. Provider perceptions of conversations after implementation were positive. During the pilot, 3 serious illness care conversations were initiated with additional patients prepared for future conversations using an information sheet and introduction to the conversation.
Introduction: Emergency department (ED)-initiated palliative care has been shown to improve patient-centred outcomes in older adults with serious, life-limiting illnesses. However, the optimal modality for providing such interventions is unknown. This study aims to compare nurse-led telephonic case management to specialty outpatient palliative care for older adults with serious, life-limiting illness on: (1) quality of life in patients; (2) healthcare utilisation; (3) loneliness and symptom burden and (4) caregiver strain, caregiver quality of life and bereavement.
Methods and analysis: This is a protocol for a pragmatic, multicentre, parallel, two-arm randomised controlled trial in ED patients comparing two established models of palliative care: nurse-led telephonic case management and specialty, outpatient palliative care. We will enrol 1350 patients aged 50+ years and 675 of their caregivers across nine EDs. Eligible patients: (1) have advanced cancer (metastatic solid tumour) or end-stage organ failure (New York Heart Association class III or IV heart failure, end-stage renal disease with glomerular filtration rate <15 mL/min/m2, or global initiative for chronic obstructive lung disease stage III, IV or oxygen-dependent chronic obstructive pulmonary disease); (2) speak English; (3) are scheduled for ED discharge or observation status; (4) reside locally; (5) have a working telephone and (6) are insured. Patients will be excluded if they: (1) have dementia; (2) have received hospice care or two or more palliative care visits in the last 6 months or (3) reside in a long-term care facility. We will use patient-level block randomisation, stratified by ED site and disease. Effectiveness will be compared by measuring the impact of each intervention on the specified outcomes. The primary outcome will measure change in patient quality of life.
Ethics and dissemination Institutional Review Board approval was obtained at all study sites. Trial results will be submitted for publication in a peer-reviewed journal.
What is known about the topic?
Palliative medicine is increasingly encountered in an emergency medicine setting, and emergency medicine residents desire further training in this field.
What did this study ask?
How many postgraduate emergency medicine programs in Canada have an existing palliative medicine curriculum?
What did this study find?
A minority (38.5%) of emergency medicine programs report having a formal palliative medicine curriculum, and the contents are variable.
Why does this study matter to clinicians?
It will be important to define how trainees will achieve competence in palliative medicine in the emergency department.
OBJECTIFS - Chez les patients en fin de vie ou en soins palliatifs à domicile, la permanence des soins en cas d'urgence reste une difficulté. Encouragées par le plan national pour le développement des soins palliatifs, les fiches SAMU pallia regroupent des informations essentielles concernant le patient et sont transmises au centre 15 de la zone de résidence du patient. Notre étude a pour but d'explorer l'utilisation de la Fiche SAMU pallia en Ille et Vilaine.
MÉTHODE - D'une part, nous avons recueilli et analysé les fiches SAMU pallia ainsi que les appels reçus les concernant au SAMU 35 sur une période de 6 mois. D'autre part, nous avons interrogé par entretiens semi dirigés les acteurs de la fiches SAMU Pallia : régulateurs et médecins rédacteurs.
RÉSULTATS - 173 fiches ont été analysées, permettant une photographie de leur utilisation. 69 appels ont été reçus, et sur 26 appels la fiche SAMU Pallia a participé à la décision du régulateur. Malgré la méconnaissance de l'outil, entraînant un déclenchement souvent tardif, la fiche SAMU pallia est bien acceptée par ses utilisateurs. Elle représente un support de discussion avec les patients et les équipes au sujet de la fin de vie, permettant de rassurer, d'anticiper, d'aider les régulateurs lors des prises de décision. Ces derniers rappellent l'importance de clarifier les propositions de prise en charge en cas d'aggravation.
CONCLUSION - Ces résultats satisfaisants positionnent la fiche SAMU pallia comme un outil supplémentaire dans la permanence des soins chez les patients en soins palliatifs à domicile.
Origine : BDSP. Notice produite par BIUSANTE o98R0xoG. Diffusion soumise à autorisation