Background: Advance care planning (ACP) is a process in which professionals, patients and their relatives discuss wishes and options for future care. ACP in the palliative phase reduces the chance that decisions have to be taken suddenly and can therefore improve the quality of life and death. The primary aim of this study is to explore how ACP takes place in cases of people with intellectual disabilities (ID).
Method: Medical files were analysed, and interviews were held in six care organisations for people with mild to severe ID. The data concerned people with ID (n = 30), 15 in the palliative phase, identified using the 'surprise question', and 15 who had died after an identifiable period of illness. Additional pre-structured telephone interviews were conducted with their relatives (n = 30) and professionals (n = 33).
Results: For half of the people with ID who had died, the first report in their file about palliative care (needs) was less than 1 month before their death. Professionals stated that ACP was started in response to the person's deteriorating health situation. A do-not-attempt-resuscitation order was recorded for nearly all people with ID (93%). A smaller group also had other agreements between professionals and relatives documented in their files, mainly about potentially life-sustaining treatments (43%) and/or hospitalisation admissions (47%). Relatives and professionals are satisfied with the mutual cooperation in ACP in the palliative phase. Cognitive and communication disabilities were most frequently mentioned by relatives and professionals as reasons for not involving people with ID in ACP.
Conclusions: Advance care planning in the palliative phase of people with ID focuses mainly on medical issues at the end of life. Specific challenges concern a proactive identification of changing needs, fear to initiate ACP discussions, documentation of ACP in medical files and the involvement of people with ID in ACP. It is recommended that relatives and professionals should be informed about the content of ACP and professionals should be trained in communicating in advance about wishes for future care.
BACKGROUND: Patient held records need to be evaluated in palliative care settings.
OBJECTIVES: To evaluate how patients, families and professionals in a specialist palliative setting use a patient held record created through close consultation with patients and carers.
METHODS: A mixed methods prospective longitudinal cohort study in the UK-adult patients under community specialist palliative care nurse review or attending day hospice were given questionnaires at record introduction and after 4-6 weeks. Hospice staff completed a questionnaire and focus group after 8 months.
RESULTS: From Sept 2016 to June 2017, 550 patients were screened, 347 (63.1%) were offered records and 259 accepted (74.6%). 238 accepted a research pack, 105 returned questionnaire 1 (44.1% response rate) and 26 returned questionnaire 2 (24.8% of initial respondents). Questionnaire 1 (patients): 40% found it burdensome repeating information, and almost 70% were interested in a record to reduce this. Questionnaire 2 (patients): 74% found the record easy to use, but few (4, 15.4%) used it regularly. Over 60% stated the record was useful and would recommend it to others, despite not using it themselves. Professionals indicated that it was mainly patients and relatives who used the record, not non-palliative professionals.
CONCLUSIONS: While initial uptake of the record was high, use appeared low. While people saw real value in the record for others, they did not generally use it themselves. This evaluation demonstrates that patient held records are unlikely to be used by palliative care patients even though they see value in the concept.
We used a standardized terminology to describe patient problems and the nursing care provided in a pilot study of a transitional palliative care intervention with patients and caregivers. Narrative phrases of a nurse's documentation were mapped to the Omaha System (problem, intervention, and target). Over the course of the intervention, 109 notes (1473 phrases) were documented for 9 adults discharged home (mean age, 68 years; mean number of morbid conditions, 7.1; mean number of medications, 15.4). Thirty-one of the 42 Omaha System problems were identified; the average number of problems per patient was 13. Phrases were mapped to all 4 problem domains (environmental, 2.6%; health-related behaviors, 52.3%; physiological, 30.8%; and psychosocial, 14.3%). Surveillance phrases were the most frequent (72.4%); case management phrases were at 20.9%, and teaching, guidance, and counseling phrases were at 6.7%. The number of problems documented per patient correlated with the time between the first and last notes ( = 0.76; P = .02) but not with the number of notes per patient ( = 0.51; P = .16). These results are the first to describe nursing interventions in transitioning palliative care from hospital to home with a standardized terminology. Linking interventions to patient problems is critical for describing effective strategies in transitioning palliative care from hospital to home.
Background:Optimal care for patients in the palliative care setting requires effective clinical teamwork. Communication may be challenging for health-care workers from different disciplines. Daily rounds are one way for clinical teams to share information and develop care plans for patients.
Objective:The objective of this initiative was to improve the structure and process of daily palliative care rounds by incorporating the use of standardized tools and improved documentation into the meeting. We chose a quality improvement (QI) approach to address this initiative. Our aims were to increase the use of assessment tools when discussing patient care in rounds and to improve the documentation and accessibility of important information in the health record, including goals of care.
Methods:This QI initiative used a preintervention and postintervention comparison of the outcome measures of interest. The initiative was tested in a palliative care unit (PCU) over a 22-month period from April 2014 to January 2016. Participants were clinical staff in the PCU.
Results:Data collected after the completion of several plan-do-study-act cycles showed increased use and incorporation of the Edmonton Symptom Assessment System and Palliative Performance Scale into patient care discussions as well as improvement in inclusion of goals of care into the patient plan of care.
Conclusion:Our findings demonstrate that the effectiveness of daily palliative care rounds can be improved by incorporating the use of standard assessment tools and changes into the meeting structure to better focus and direct patient care discussions.
Noel Conway recently lost his appeal at the High Court calling for a judicial review into the blanket ban on assisted dying and stated his intention to seek permission to appeal to the Supreme Court. Regardless of outcome, uncertainty remains surrounding the practice of access to medical records when a patient seeks an assisted death abroad.1
The numbers of British citizens dying in Switzerland is increasing year on year. Last year 47 British citizens died at Dignitas alone and their UK-based membership rose to 1139 people.2 However, Dignitas is only one of three Swiss organisations that accept British citizens and so the true incidence remains unknown.
BACKGROUND: Factors leading to inappropriate critical care, that is treatment that should not be provided because it does not offer the patient meaningful benefit, have not been rigorously characterized.
OBJECTIVE: We explored medical record documentation about patients who received inappropriate critical care and those who received appropriate critical care to examine factors associated with the provision of inappropriate treatment.
DESIGN: Medical records were abstracted from 123 patients who were assessed as receiving inappropriate treatment and 66 patients who were assessed as receiving appropriate treatment but died within six months of intensive care unit (ICU) admission. We used mixed methods combining qualitative analysis of medical record documentation with multivariable analysis to examine the relationship between patient and communication factors and the receipt of inappropriate treatment, and present these within a conceptual model.
SETTING: One academic health system.
RESULTS: Medical records revealed 21 themes pertaining to prognosis and factors influencing treatment aggressiveness. Four themes were independently associated with patients receiving inappropriate treatment according to physicians. When decision making was not guided by physicians (odds ratio [OR] 3.76, confidence interval [95% CI] 1.21-11.70) or was delayed by patient/family (OR 4.52, 95% CI 1.69-12.04), patients were more likely to receive inappropriate treatment. Documented communication about goals of care (OR 0.29, 95% CI 0.10-0.84) and patient's preferences driving decision making (OR 0.02, 95% CI 0.00-0.27) were associated with lower odds of receiving inappropriate treatment.
CONCLUSIONS: Medical record documentation suggests that inappropriate treatment occurs in the setting of communication and decision-making patterns that may be amenable to intervention.
BACKGROUND: Advance care planning (ACP) is recommended for patients with chronic obstructive pulmonary disease (COPD). Yet, ACP documentation is often inaccessible at the time of impending respiratory failure, which may lead to unwanted and costly medical intensive care unit admissions. Electronic medical records (EMRs) contain directive fields and the ability to search for keywords and phrases, but these strategies to rapidly identify ACP have not been validated.
OBJECTIVES: The aim of this study is to identify the percentage of patients with severe COPD exacerbation who have outpatient ACP documentation and validate two EMR-based methods of rapidly identifying ACP documentation.
DESIGN: Retrospective cohort analysis.
SETTING/SUBJECTS: Patients who required medical intensive care unit admission for exacerbation of COPD at an urban safety-net hospital between 2009 and 2014 were observed.
MEASUREMENTS: We analyzed the sensitivity and specificity of two methods to rapidly identify outpatient ACP documentation: (1) documentation in the EMR directive field and (2) text string search of notes for key phrases, compared with a gold standard clinician review.
RESULTS: Our cohort (n = 311) was racially diverse and severely ill with obstructive lung disease. One hundred thirty-two patients (43%) had ACP documentation by gold standard chart review. Compared with a gold standard chart review, a parsimonious text string search was both sensitive (95%) and specific (97%), while the directive box was specific (100%), but not sensitive (54%), for identifying outpatient ACP documentation.
CONCLUSIONS: EMR directive fields may substantially underestimate ACP when used alone. As full clinician chart reviews are impractical in the emergent setting, text string searches may be a useful strategy to rapidly identify ACP discussions for clinical care and research.
Over the span of their career, physicians experience changes to their professional role and professional identity. The process of continual adaptation in their work setting incurs losses. These losses can be ambiguous, cumulative, and may require grieving. Grief in the workplace is unsanctioned, and may contribute to physicians' experience of burnout (emotional exhaustion, depersonalization, low sense of achievement). Acknowledging loss, validating grief, and being prescient in dealing with physician burnout is essential.
Many patients with acute devastating brain injury die outside intensive care units and could go unrecognized as potential organ donors. We conducted a prospective observational study in seven hospitals in the Netherlands to define the number of unrecognized potential organ donors outside intensive care units, and to identify the effect that end-of-life care has on organ donor potential. Records of all patients who died between January 2013 and March 2014 were reviewed. Patients were included if they died within 72 h after hospital admission outside the intensive care unit due to devastating brain injury, and fulfilled the criteria for organ donation. Physicians of included patients were interviewed using a standardized questionnaire regarding logistics and medical decisions related to end-of-life care. Of the 5170 patients screened, we found 72 additional potential organ donors outside intensive care units. Initiation of end-of-life care in acute settings and lack of knowledge and experience in organ donation practices outside intensive care units can result in under-recognition of potential donors equivalent to 11-34% of the total pool of organ donors. Collaboration with the intensive care unit and adjusting the end-of-life path in these patients is required to increase the likelihood of organ donation.
Data on treatment and outcome of advanced breast cancer in routine practice are rare, especially concerning recurrent disease, but important to complement the results from clinical trials and to improve the standard of care. We present data on choice of systemic first-line treatment, number of treatment lines, and survival of patients treated by medical oncologists in Germany. 1395 patients recruited by 124 sites at start of first-line therapy into the ongoing, prospective German clinical cohort study TMK (Tumour Registry Breast Cancer) between February 2007 and October 2015 were analysed. The median OS was 33.8 months (95% CI 30.2-40.2) for HR-positive/HER2-negative, 38.2 months (95% CI 31.3-43.0) for HER2-positive and 16.8 months (95% CI 11.5-22.0) for triple negative breast cancer. Patients with triple negative tumours more often died before start of a third-line therapy than patients with HR-positive or HER2-positive tumours (44% vs. 25%). Use of taxane-based chemotherapies has increased since 2007, with 65% of all first-line chemotherapy-treatments containing taxanes in 2013-15 (60% HR-positive/HER2-negative, 75% HER2-positive, 56% triple negative). 52% of the patients with HR-positive/HER2-negative tumours received first-line endocrine therapy in 2013-15; when restricted to patients with only non-visceral metastases this percentage increased to 63%. To our knowledge, this is the first cohort study showing systemic first-line therapy for all subtypes of advanced breast cancer. Overall survival in the TMK is comparable to that reported by clinical trials despite the inclusion of older and comorbid patients.
Background: Few studies have looked at how decisions are made to withhold or to withdraw potentially life-sustaining treatments (LST) in paediatric nephrology. The aim of this work was to evaluate such practices in all nephrology centres in French-speaking European countries, so that guidelines could be discussed and drawn up by professionals.
Methods: We used semi-directed interviews to question health care professionals prospectively. We also retrospectively analysed the medical files of all children (n = 50) for whom a decision to withhold or to withdraw LST had been made in the last 5 years. The doctors (n = 31) who had been involved in the decision-making process were interviewed.
Résults: All 31 of the French-speaking paediatric nephrology centres in Europe were included in this study. Of these, 18 had made decisions in the previous 5 years about withholding or withdrawing LST. Resultant quality of life, based on long-term living conditions, was the principal criterion used to make the decisions. Relational aspects of life and the child's prognosis were also considered. The decision-making processes were not always collective, even though interactions between doctors and the rest of the medical team seemed to be key elements to them. The parents' involvement in the decision-making process differed between centres.
Conclusions: The criteria used to decide whether to withhold or to withdraw LST are not standardized, and no specific guidelines exist.
L'auteure revient sur les trois décrets de la loi du 2 février 2016 sur la fin de vie : le décret n°2016-1067 du 3 août 2016 relatif aux directives anticipées, le décret n°2016-1066 du 3 août 2016 relatif aux procédures collégiales et le décret n°2016-914 du 4 juillet 2016 sur le dossier médical partagé.
L'auteur relate et analyse l'actualité législative et documentaire suivante en 2011 : évaluation du 3ème Plan d'amélioration de la prise en charge de la douleur 2006-2010, parution du Guide de projet Dossier Médical Personnalisé (DMP), nomination de 3 nouveaux professeurs associés en soins palliatifs, bilan du 3ème Plan de développement des soins palliatifs.
Les auteurs montrent, à travers deux études complémentaires, que la démarche palliative est présente dans le service de médecine interne du CHU de Tours. L'activité peut cependant être développée. En effet, le manque de formation et de communication est responsable de difficultés, voire de souffrances pour les personnels.
Les dossiers tenus par les patients sont vus comme améliorant la communication et donnant plus de contrôle aux patients, mais ils sont loin d'être largement utilisés. Que pensent les infirmières et les médecins travaillant dans un hôpital de soins aigus de leur utilisation dans un contexte de soins palliatifs ? L'auteure présente les résultats de son enquête pilote exploratoire.
L'auteure, infirmière en onco-hématologie aux Hôpitaux Civils de Colmar, un service qui accueille des bénévoles, traite dans cet article du dossier médical, du dossier soins et du classeur des bénévoles.
Ce document intitulé "Cancérologie et soins palliatifs" se divise en quatre parties : l'accès aux soins palliatifs : principes juridiques ; la mise en oeuvre des soins palliatifs : principes organisationnels ; difficultés pratiques et recommandations utiles ; obligations d'information et recueil du consentement dans le domaine des soins palliatifs.
Les directives anticipées existent depuis 2005 mais restent encore méconnues du public. Il apparaît difficile et délicat à bon nombre d'infirmières d'expliquer et de recueillir les directives anticipées auprès des personnes âgées hospitalisées. Une enquête a été menée en gériatrie au Centre hospitalier d'Allauch pour mieux connaître les difficultés rencontrées par les équipes.
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L'objectif de cette étude était de regarder quel était réellement le nombre de demandes d'euthanasie et de souhaits de mort de la part des patients dans une unité de soins palliatifs. Les auteurs ont analysé les dossiers de 2157 patients en repérant les expressions de souhait de mort et / ou d'euthanasie. Les résultats montrent que peu de patients (3%) font réellement des demandes d'euthanasie réitérées.
Le médecin doit pouvoir répondre de sa décision : Pierre-Yves Gallard rappelle le cadre juridique de la décision médicale et l'importance du dossier du patient, référence essentielle en cas de litige ultérieur. Face aux évolutions en cours - tant sociétales que technologiques - qui risquent de rendre plus complexe encore la prise de décision, la conscience du médecin et la confiance du patient demeurent des ingrédients essentiels pour que l'acte médical conserve son humanité.