Evidence-based advocacy within the United Nations system for integration of palliative care into primary health care is essential to inspire and nurture the political will necessary to support the development and funding of national palliative care policy. National policy is, in turn, essential to underwrite clinical delivery that leaves no patient behind. Although International Association for Hospice and Palliative Care (IAHPC) has engaged in advocacy since its inception, the board decision to prioritize advocacy as part of the organization's strategic plan has taken it to a more formal level. This piece summarizes the content of the basic advocacy course released for IAHPC members, defines palliative care and advocacy, distinguishes advocacy from lobbying, discusses how an international organization such as the IAHPC advocates for palliative care at the global level, and clarifies the vital feedback loop between advocacy and clinical practice.
Over the past decade, substantial progress has been made in building the evidence base for integrating palliative care with cancer care and increasing the availability of palliative care services for patients with cancer. Multiple clinical trials have evaluated proactive care models in which patients begin to receive palliative care services on the basis of an initial diagnosis of advanced cancer or disease progression. The goal of these delivery models is to improve patients’ experiences and outcomes throughout their illness course rather to wait to involve palliative care until they are struggling with uncontrolled symptoms. These studies have demonstrated that earlier and longitudinal involvement of palliative care improves patients’ quality of life, mood, and satisfaction with care. Several studies also have shown that earlier involvement of palliative care enhances the experience of patients’ caregivers and leads to improved communication and delivery of end-of-life care. As these data emerged, ASCO and several other national organizations endorsed the early involvement of palliative care for patients with advanced cancer, which has substantially transformed the practice of palliative care in oncology.
La relation médecin-patient qui fonde la prise en charge médicale depuis l’antiquité a été modifiée par les progrès scientifiques des 30 dernières années et par les lois du début du 21e siècle qui ont rendu son autonomie au patient. Notre réflexion a été suscitée par un cas clinique de prise en charge palliative en cancérologie, où semblent s’opposer connaissances médicales et intuition. Nous chercherons à comprendre comment données scientifiques, intuition et expérience permettent d’adapter le jugement médical à la singularité de chaque patient.
Background: Patients with advanced chronic obstructive pulmonary disease have difficulty reporting their holistic support needs to health care professionals, undermining delivery of person-centred care. We lack tools that directly support patients with this.
Aim: To develop an evidence-based, designed-for-purpose, tool to enable patients to directly identify and express support needs to health care professionals.
Design: Two-stage qualitative study. Stage 1: domains of support need were identified through a systematic review, analysis of an established qualitative dataset and patient/carer focus groups. Stage 2: draft tool developed using the identified domains of need and then refined through feedback from patients, carers and health care professionals, ensuring acceptability and suitability.
Setting/participants: Stage 1 patients/carers recruited via four primary care practices and two patient support groups (East of England). Stage 2 health care professionals recruited via the Clinical Research Network and local community trust and patients/carers through two further practices and two additional support groups (East of England). In total, 57 patients, carers and health care professionals participated.
Results: A comprehensive set of evidence-based support domains (for example: overcoming boredom or loneliness, knowing what to expect in the future) was identified and formulated into questions. The resulting tool asks patients to consider whether they need more support in 15 broad areas. Patients, carers and clinical stakeholders broadly endorsed the tool’s content and wording.
Conclusion: The Support Needs Approach for Patients (SNAP) tool is a concise evidence-based tool designed to help patients with advanced chronic obstructive pulmonary disease identify and express their support needs to enable delivery of person-centred care.
CONTEXT: Patients with severe burns may face distressing symptoms with a high risk of mortality as a result of their injury. The role of palliative care in burns management remains unclear.
OBJECTIVE: To appraise the literature on the role of palliative care in burns management.
METHODS: Scoping review with searches in twelve databases from their inception to August 2019. The citation retrieval and retention are reported in a PRISMA statement.
FINDINGS: 39 papers comprising of 30 primary studies (26 from high income and 4 from middle income countries), 4 reviews, 2 editorials, 2 guidelines and 1 expert board review document were retained in the review. Palliative care is used synonymously with comfort and end of life care in burns literature. Comfort care is mostly initiated when active treatment is withheld (early deaths) or withdrawn (late deaths), limiting its overall benefits to burn patients, their families and health care professionals. Futility decisions are usually complex and challenging, particularly for patients in the late death category and it is unclear if these decisions result in timely commencement of comfort care measures. Two comfort care pathways were identified but it remained unclear how these pathways evaluated 'good death' or supported the family which creates the need for the development of other evidence-based guidelines.
CONCLUSION: Palliative care is applicable in burns management but its current role is mostly confined to the end of life period suggesting that it is not been fully integrated in the management process. Evidence-based guidelines are needed to support the integration and delivery of palliative care in the burn patient population.
OBJECTIVE: Patients with chronic heart failure (CHF) may be insufficiently treated pharmacologically. Recently, we presented a person-centred integrated Palliative advanced homecaRE and heart FailurE caRe (PREFER) strategy and compared it with usual care (control). Patients managed according to PREFER had improved health-related quality of life and markedly reduced hospitalisations compared with the control group. We hypothesised that these improvements may have been partly due to better drug treatments within the PREFER strategy. Thus, our aim in this study was to explore the management of drug treatments in the PREFER group compared with the control group.
METHODS: Doses and numbers of drugs and the number of patients receiving the target doses based on current guidelines were measured and compared between the groups at the start and finish of the study.
RESULTS: The percentages of ACE inhibitors (ACEIs) or mineralocorticoid receptor antagonists (MRAs) increased, while loop diuretics decreased in the PREFER arm during the study, although the differences were not significant. Beta-receptor blockers (BBs) decreased somewhat in both groups. The number of patients treated with MRAs differed the most between groups, and increased from 10 (28%) to 15 (48%) in the PREFER arm compared with 13 (35%) vs 13 (39%) in the control group. The change in patients receiving full target doses (+8 vs. +1) of the ACEIs/angiotensin receptor blockers, BBs and MRAs were significantly higher (p=0009) in the PREFER arm than in the control arm.
CONCLUSIONS: Person-centred integrated care of patients with severe CHF was associated with increased evidence-based drug treatments, especially MRAs.
CLINICAL TRIAL NUMBER: NCT01304381.
Health care professionals use teach-back to foster adherence to treatment recommendations and to improve safety and quality of care. This improvement project, conducted in one division of a home care agency, used a pretest-posttest design with an interprofessional group of hospice home care clinicians to incorporate teach-back into home visits to evaluate if the use of teach-back enhanced caregiver and patient-provider communication, improved caregivers' confidence in caring for hospice home care patients, and decreased hospitalizations. After the intervention, the teach-back group had zero hospitalizations compared with 2 for the non–teach-back group (0% and 1.97%, respectively), and patient-caregiver “confidence” increased from 58% to 81%, pre to post intervention. In conclusion, teach-back is a cost-effective teaching methodology that can be implemented by any discipline to improve patient-provider communication and patient outcomes.
BACKGROUND: Prioritisation of end-of-life care by policymakers has been the subject of extensive rhetoric, but little scrutiny. In England, responsibility for improving health and care lies with 152 regional Health and Wellbeing Boards.
AIM: To understand the extent to which Health and Wellbeing Boards have identified and prioritised end-of-life care needs and their plans for improvement.
DESIGN: Qualitative documentary analysis of Health and Wellbeing Strategies. Summative content analysis to quantify key concepts and identify themes.
DATA SOURCES: Strategies were identified from Local Authority web pages and systematically searched to identify relevant content.
RESULTS: In total, 150 strategies were identified. End-of-life care was mentioned in 78 (52.0%) and prioritised in 6 (4.0%). Four themes emerged: (1) clinical context - in 43/78 strategies end-of-life care was mentioned within a specific clinical context, most often ageing and dementia; (2) aims and aspirations - 31 strategies identified local needs and/or quantifiable aims, most related to the place of death; (3) narrative thread - the connection between need, aim and planned intervention was disjointed, just six strategies included all three components; and (4) focus of evidence - where cited, evidence related to evidence of need, not evidence for effective interventions.
CONCLUSION: Half of Health and Wellbeing Strategies mention end-of-life care, few prioritise it and none cite evidence for effective interventions. The absence of connection between need, aim and intervention is concerning. Future research should explore whether and how strategies have impacted on local populations.
BACKGROUND: Death and dying is a reality of the clinical context of the intensive care unit. Death often follows a decision to withdraw life-sustaining treatments. Critical care nurses, are the primary care providers to patients and families at the end-of-life in the intensive care unit.
OBJECTIVE: To synthesize qualitative evidence on the experiences of critical care nurses who have cared for patients and families throughout the process of withdrawal of life-sustaining treatment.
METHODS: This was a systematic review and qualitative evidence synthesis modeled on the Joanna Briggs Methodology. Pre-defined keywords were searched for in Medline, CINAHL, PsycInfo, and Web of Science to locate studies published in the English, French, and Greek languages in any year. Two reviewers independently screened articles for congruence with eligibility criteria, engaged in data extraction, and assessed quality of the included studies. Meta-aggregation was performed to synthesize the findings. A protocol was developed by two members of the review team prior to initiation of the study.
RESULTS: Thirteen studies were included in the review, 12 qualitative and one mixed-methods. Four key themes were identified from the original research: Navigating Complexity and Conflict; Focusing on the Patient; Working with Families; and Dealing with Emotions Related to Treatment Withdrawal. Critical care nurses provide care to patients and families during the process of withdrawal of life-sustaining treatment which is described as complex and challenging. Despite the inherent challenges, nurses strive towards doing their utmost for patients and families.
Cet article traite de la question clinique suivante : quels traitements et quelles interventions de soins palliatifs en fin de vie sont-ils basés sur des preuves dans le domaine de la douleur, de la dyspnée et de la dépression ?
Despite increasing medical advances, intensive care unit registered nurses frequently care for patients at the end of life. Registered nurses have identified insufficient education as a major contributor to inadequate communication, symptom recognition, and symptom management in this population. The purpose of the project was to increase knowledge regarding evidence-based practices in management related to end-of-life care. Project implementation occurred in 6 intensive care units at a 1019-bed academic, tertiary care hospital and included providing registered nurses with a 3.5-hour classroom-based educational session on end-of-life nursing management. Before the educational sessions, participants (n = 46) completed a demographic sheet and a multiple-choice pretest reflective of foundational intensive care unit end-of-life nursing knowledge. After the educational session, the same test was administered as a posttest. A statistically significant change (P < .001) existed between the mean pretest scores (79.4%) and mean posttest scores (96.7%) of participants. In addition, 100% of participants met the external benchmark of an aggregated mean posttest score of 80% or higher. Future research should focus on assessing specific areas of end-of-life nursing knowledge deficit, determining optimal educational content delivery methods, and evaluating the clinical impact of increasing knowledge on patient symptom recognition and management.
The provision of medically administered nutrition and hydration (MNH) for the terminally ill patient is a controversial issue and there has been much debate in the literature concerning this sensitive subject. This article reports on a qualitative research study that explores palliative care nurses' and doctors' perceptions and attitudes to patient nutrition and hydration at the end of life. Participants were from an urban and rural palliative care service. Three main discourses were identified: carers' distress at the non-provision of MNH; palliative care doctors' and nurses' position that terminal dehydration lessened the burden of suffering for dying patients; and polarisation between the acute care setting and the palliative care setting. Overlaying these three main discourses are contesting discourses involving cure vs comfort, and acute care vs palliative care. Importantly, the findings of this study reveal that palliative doctors and nurses believe that medically assisted nutrition and hydration at the end stage of life rarely benefits patients, and as long as adequate mouth care is given, patients do not suffer. However, family members do experience emotional distress in dealing with this situation. In caring for dying people, the nurse's and doctor's role is one of education and communication, involving a team approach to manage this difficult issue.
Palliative care is a notoriously elusive concept for many people unacquainted with it to grasp. María Arantzamendi and Carlos Centeno discuss the intangible nature of many aspects of palliative care and the challenges those who work in palliative care face in disseminating these concepts.
La démarche empruntée dans ce mémoire est celle d'une revue systématique de la littérature, afin d'identifier de manière probante les facteurs influençant les décisions infirmières lors de la mise en oeuvre opérationnelle d’un protocole anticipé de sédation palliative.
The purpose of this quality improvement project was to improve the recognition of delirium in an inpatient hospice setting through the use of the Confusion Assessment Method (CAM) by staff nurses. After receiving education on the CAM, staff nurses used the tool to assess for the presence of delirium among adult patients admitted for hospice care. Those who screened positive were further assessed for reversible causes of the syndrome with CHIMBOP (constipation, hypovolemia/hyponatremia, infection, medications, bladder catheter or obstruction, oxygen deficiency, and pain). After project implementation over 8 weeks, nurses completed an ease-of-use survey for the tool. Ninety-two percent of adult hospice patients eligible for delirium assessment were assessed by staff nurses. Of these, 36% screened positive for delirium. The ease-of-use survey indicated that approximately 30% of nurses strongly agreed or agreed that the CAM and CHIMBOP added value to their nursing practice. The results of this project indicated that nursing staff are able to assess for delirium in the inpatient hospice setting but most do not agree that the CAM and CHIMBOP add value in their practice.
Les soins prodigués aux patients gravement malades en fin de vie sont perçus comme un indicateur de la qualité des soins de santé. De nombreux patients gravement malades sont admis en unité de soins intensifs, où l'objectif principal est de contrôler ou de faire régresser la maladie. Ceci peut se traduire pour le malade par une baisse de satisfaction, des examens superflus et une mauvaise prise en charge des symptômes. Cette étude a mesuré la satisfaction des patients, la durée des séjours, les coûts, les taux de mortalité et de réadmission de patients gravement malades dans une unité de soins intensifs située dans un hôpital dépourvu de service de soins palliatifs.
Au sommaire de ce dossier sur l'incertitude : "Accompagner les patients dans l'incertitude" - "Incertitude et Evidence Based Medicine" - "L'incertitude comme fondement de l'éthique" - "Démarche palliative au coeur des limites en néonatalogie et pédiatrie" - "Être confronté à l'incertitude en médecine périnatale" - "La sclérose en plaques : imprévisibilité évolutive et risque thérapeutique" - "Où commence la fin ? Incertitudes sur la fin de vie en gériatrie" - "L'incertitude en médecine : analyse et perspectives au regard d'une pratique soignante en unités de soins palliatifs" - "Et dire qu'il faut se défaire de tout !".
Origine : BDSP. Notice produite par APHPDOC pm7R0xIG. Diffusion soumise à autorisation
D’une obligation faite aux médecins et aux établissements de santé, le soulagement de la douleur est devenu un droit du patient avec la loi du 4 mars 2002. C’est un droit subjectif de la personnalité qui impose au médecin les obligations de résultat de prévention, d’évaluation, de prise en compte de la douleur et l’obligation de moyen de traitement de la douleur. Cette dernière obligation est tempérée par la liberté de prescription. Pour assurer une sécurité juridique aux praticiens, il est impératif que ceux-ci renseignent scrupuleusement le dossier médical. Sont aussi très utiles les protocoles relatifs à la douleur. Mais ceux-ci ne dispensent pas d’adapter la prise en charge au patient. En somme, la prise en compte de la douleur par le médecin est une obligation humaniste.
La littérature et la pratique clinique actuelles suggèrent que les soins des plaies dans les unités de soins palliatifs sont une question commune et complexe qui affecte de manière négative le bien-être des patients et des familles.
En moins d'une demi-génération, s'est opéré un bouleversement radical qui oriente de façon décisive la réflexion et la pratique médicales. Cet ouvrage réunit plusieurs textes d'Alain Charles Masquelet, membre de l'Académie de chirurgie et du conseil scientifique du Centre Georges Canguilhem, textes qui tentent de cerner ces transformations de la médecine contemporaine. Trois types d'enjeux sont analysés à travers des chapitres spécifiques : - les enjeux de pratique (évolution de la chirurgie, rôle d'un chef de service en milieu hospitalier, situations de stress au bloc opératoire) - les enjeux de connaissance (mutation de l'activité clinique, regard médical sur le corps, notion d'incertitude et de précaution en médecine, questions soulevées par l'Evidence-based medicine - EBM) - les enjeux éthiques (contradictions et ambivalence du soin, nouvelles pratiques de soin, présupposés médicaux relatifs aux transferts d'organes, processus de métamorphose et d'individuation liés à la greffe du visage).
Origine : BDSP. Notice produite par EHESP JR0xI8H9. Diffusion soumise à autorisation