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.
Ni la personne âgée ni le personnel soignant ne désirent spontanément aborder en institution les questions relatives à la fin de vie. Comment le faire ?
L'Agence nationale de l'évaluation et de la qualité des établissements et services sociaux et médico-sociaux (ANESM) a établi des recommandations concernant la qualité de vie en établissement d'hébergement pour personnes âgées dépendantes (EHPAD). Elle explique que "les échanges avec les résidents autour de la mort, la leur et celle des autres, leur permettent d'exprimer, s'ils en ressentent le besoin, leurs doutes, angoisses et interrogations". Les mots utilisés traduisent bien toute la difficulté de ce sujet. Le moment préconisé pour cette discussion n'est pas précisé. L'ANESM évoque simplement "au cours de son séjour". Quelques pistes sur la façon de mener ces entretiens sont apportées, mais nous sentons tous que ce thème n'est pas plus neutre pour le patient que pour le professionnel.
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Pain is one of the most feared symptoms experienced by patients at the end of life and one of the most difficult to manage. Families identify patient comfort as a priority in hospice, yet many have concerns regarding pain management and medication side effects. Timely, open, and ongoing communication with hospice teams can assuage concerns to improve care and outcomes relevant to pain medication use in hospice. A pilot project was undertaken to improve the patient and family/caregiver experience in end-of-life care relevant to communication regarding pain medication side effects and management within an inpatient hospice. A 5% improvement in the Consumer Assessment of Healthcare Providers & Services (CAHPS) Hospice quality indicator 18 (Understanding Side Effects) was sought. An evidence-based, interprofessional educational protocol and tool were designed and implemented to guide pertinent conversations. A 6.6% increase in favorable responses to the CAHPS Hospice target indicator occurred over the course of the pilot. Feedback from staff revealed positive responses to the tool with recommended expansion of use across hospice settings. Educational programming holds promise to support communication with hospice patients and families regarding pain medication side effects and management to improve experiential care quality as reflected in CAHPS Hospice surveys.
As healthcare systems worldwide are confronted with increasing numbers of aging patients and those living with life-limiting illnesses, the topic of where people want to spend their last days has received considerable attention. However, the strategies that researchers and clinicians use to capture these end-of-life views vary greatly in four key questions. These include: what, how, when and who to ask about location preferences. We will argue that how researchers and clinicians choose to answer these questions directly influences their findings. Based on these considerations, we will highlight ways to improve future palliative care and empirical end-of-life studies by addressing the precision, methods, timing and sources of preference assessments. Only when we are able to accurately identify where people want to spend their last days, can we begin to meet the needs of patients as they approach the final stage of their lives.
Goals-of-care discussions at end-of-life are associated with increased patient satisfaction and reduced treatment burdens, reduced family and healthcare worker distress and healthcare costs, while achieving equal life-expectancy. It is unclear how goals-of-care discussions should occur. The objective of the study was to determine which patients could benefit, requirements, content, documentation, and harms and benefits of emergency medicine goals-of-care discussions. We sought primary evidence on goals-of-care discussions in EDs with adult patients nearing end-of-life, published in English after 1989. Data sources included Medline, Embase, PsycINFO, CINAHL, Web of Science and reference lists of included articles. One thousand nine hundred and twenty abstracts were screened, five articles selected. There was no consensus on the meaning of goals-of-care, which is often confused with advanced care planning and treatment limitation. Emergency clinicians can identify most patients needing discussions following training. There was no evidence for how to involve stakeholders, nor how to adapt conversations to meet cultural and linguistically diverse needs. Expert panels have suggested requirements and content for conversations with little supporting evidence. There was no evidence for how emergency conversations differ to those in other settings, nor for harms or benefits for holding goals-of-care conversations in EDs. Increased ED goals-of-care conversations increased hospice referral and reduced in-patient admissions. Most studies were of moderate quality only, outcomes were not standardised and sample sizes were small. 'Goals-of-care' is used inconsistently across the literature. This is the first systematic review regarding goals-of-care discussions in EDs. Further research is needed on all aspects of these conversations.
BACKGROUND: Guidelines for device-based therapy of cardiac rhythm abnormalities were updated in 2008 including discussions prior to implantation with implantable cardioverter defibrillator (ICD) recipients regarding end-of-life (EOL) choices.
OBJECTIVES: To explore patients' knowledge of the function of the ICD at EOL.
METHODS: ICD recipients from Central Kentucky and Melbourne, Australia completed the Experiences, Attitudes, and Knowledge of EOL.
RESULTS: Of the 240 ICD recipients, 76% reported that they have never had discussions with their health care provider regarding the withdrawal of defibrillation therapy. A total of 38% believed that turning off the ICD shocks was the same as active euthanasia and that disabling defibrillation therapy required surgical intervention; 37% believed that once defibrillation was disabled, it could not be enabled again.
CONCLUSIONS: Adherence to guidelines regarding EOL discussions with ICD recipients was minimal from the patients' perspective. Most patients may hold alarming misperceptions that could interfere with optimal EOL care.
Background: Community-dwelling adults with serious illness benefit from conversations about their goals for care.
Objective: We undertook a project to increase the number of serious illness conversations occurring in an accountable care organization (ACO) using a script delivered telephonically by nurse care managers.
Design: Working with nurses previously trained in the basics of geriatric assessment and goals-of-care conversations, we used a quality improvement framework to modify the Ariadne Laboratories Serious Illness Conversation Guide to a six-question script.
Subjects: Our target population was a subset of patients enrolled in a program within the ACO for patients who are high health care utilizers.
Measures: After testing and modifying the script, we imbedded it into the initial nursing assessment in the electronic medical record. The electronic medical record prompts the nurses to ask the questions every three months to track changes in goals of care over time.
Results: We have increased documentation of goals-of-care conversations from 33% of patients in the subpopulation during the first month of this project to 86% at the end of the first year. Nurse care managers' report that clinical outcomes are improved by these conversations.
Conclusions: This project demonstrates a unique way to modify the Serious Illness Conversation Guide for use by nurses as part of a health care team. This project can be adapted by other health care organizations trying to increase goals-of-care conversations in their patient population.
Les personnes en état végétatif permanent posent des questions éthiques, sociétales notamment sur la poursuite ou non de la nutrition et de l'hydratation artificielles. Dans cet article, l'auteur explore les processus décisionnels à l'oeuvre dans ces situations.
L’approche des soins palliatifs centrée sur la personne malade oblige à établir des partenariats entre cette dernière, les soignants, la famille, les professionnels sociaux et les bénévoles d’accompagnement. La communication qui se décline dans le dialogue, l’écoute, l’instauration d’une relation de confiance, l’observation des comportements et du langage corporel est essentielle face à l’incertitude et à un questionnement existentiel du malade et de ses proches. À domicile, comme en témoigne cette infirmière expérimentée, ces questionnements convoquent les soignants dans leur professionnalisme et leur humanité.
OBJECTIVES: To describe the impact of advance care planning (ACP) education on nurses' confidence in ACP knowledge and practice and to identify barriers to facilitate ACP conversation in a bone marrow transplantation unit.
SAMPLE & SETTING: 60 nurses working in the bone marrow transplant unit at Oregon Health and Science University, an academic medical center.
METHODS & VARIABLES: The aim of this quality improvement project was to increase ACP conversations by nurses. The authors used a single-group pre-/post-test design to assess the effectiveness of a 30-minute educational intervention in changing nurses' confidence and practice. Group interviews were conducted to identify barriers to ACP.
RESULTS: The educational intervention increased nurses' confidence in knowledge about ACP. The number of nurses who discussed ACP with patients also increased, but it was not statistically significant. Lack of time, inefficient workflow, and concerns about questioning providers' understanding of patient preferences were identified as barriers for nurses engaging in and documenting ACP conversations.
IMPLICATIONS FOR NURSING: In addition to appropriate education, strategies that help tailor ACP practice to fit into nurse workflow and promote collaboration with other healthcare team members are needed to change nurses' ACP practice.
OBJECTIVE: Collusion is a largely unconscious, dynamic bond, which may occur between patients and clinicians, between patients and family members, or between different health professionals. It is widely prevalent in the palliative care setting and provokes intense emotions, unreflective behavior, and negative impact on care. However, research on collusion is limited due to a lack of conceptual clarity and robust instruments to investigate this complex phenomenon. We have therefore developed the Collusion Classification Grid (CCG), which we aimed to evaluate with regard to its potential utility to analyze instances of collusion, be it for the purpose of supervision in the clinical setting or research.
METHOD: Situations of difficult interactions with patients with advanced disease (N = 10), presented by clinicians in supervision with a liaison psychiatrist were retrospectively analyzed by means of the CCG. Result 1) All items constituting the grid were mobilized at least once; 2) one new item had to be added; and 3) the CCG identified different types of collusion.
SIGNIFICANCE OF RESULTS : This case series of collusions assessed with the CCG is a first step before the investigation of larger samples with the CCG. Such studies could search and identify setting-dependent and recurrent types of collusions, and patterns emerging between the items of the CCG. A better grasp of collusion could ultimately lead to a better understanding of the impact of collusion on the patient encounter and clinical decision-making.
Sous-couvert de principe d'autonomie, où nous nous devons d'informer le malade, de suivre ses directives, ne sommes-nous pas en train d'induire une angoisse supplémentaire au patient en fin de vie ? Qu'en est-il de nos possibilités d'accompagner ? Quelle place pour les professionnels de santé; en soins palliatifs, dans ce contexte ? L'influence du corps médical à rédiger les directives anticipées peut avoir l'effet inverse d'empêcher le singulier et d'être dans des conduites prédéterminées. Il semble important de se questionner sur nos intentions quand nous demandons à un patient en fin de vie de rédiger ses directives anticipées.
In this narrative, a third-year medical student recounts an experience with a patient she had while accompanying hospice and palliative workers on home visits. It was a tragic scene to witness, but somehow she left with spirits light. The afternoon with this woman-who suffered from Alzheimer's Disease-stood out. The medical student still thinks about her to this day.
La prise de décision partagée correspond à l’un des modèles de décision médicale où patient et professionnels de santé délibèrent autour des options disponibles et les hiérarchisent selon les préférences du patient. Des aides à la décision peuvent les aider dans ce dialogue. Elles participent à l’amélioration de la qualité des soins.
La question du transfert nourrit abondamment la littérature des soins. Face à un patient en fin de vie, les soignants, ébranlés affectivement, perdent parfois leurs repères thérapeutiques. En s’appuyant sur les principes du contre-transfert, ils peuvent espérer accompagner ces patients avec toute l’empathie requise, sans se perdre dans la complexité des enjeux transférentiels.
Aim: The aim of this study was to illuminate the communication and its meaning in unexpected sudden death with stroke as example, as experienced by stroke team members and next of kin.
Subject and Methods: The study has a qualitative design. Secondary analysis of data from four previous interview studies with stroke team members; physicians, registered nurses, and enrolled nurses from the stroke units (SU) and next of kin of patients who had died due to acute stroke during hospital stay were utilized.
Results: Communication is revealed as the foundation for care and caring with the overarching theme foundation for dignified encounters in care built-up by six themes illuminating the meaning of communication in unexpected sudden death by stroke.
Conclusion: Communication shown as the foundation for dignified encounters in care as experienced by stroke team members and next of kin enables the patient to come forth as a unique person and uphold absolute dignity in care. Acknowledging the next of kin's familiarity with the severely ill patient will contribute to personalizing the patient and in this way be the ground for a person centeredness in care despite the patients' inability to defend their own interests. Through knowledge about the patient as a person, the foundation for dignified care is given, expressed through respect for the patient's will and desires and derived through conversations between carers and next of kin.
BACKGROUND: Advance care planning (ACP) can offer benefits to patients and their families, especially when delivered in outpatient settings, but uptake remains low. Common barriers for health professionals include a perceived lack of time and adequate training, experience, and confidence in conducting ACP. Patient-reported barriers include a lack of awareness of ACP or discomfort initiating or engaging in discussions about end-of-life.
METHODS: We aimed to explore patients' perspectives of an ACP intervention designed to address common barriers to uptake in the general practice setting. We provided training and support to doctors and general practice nurses (GPNs) to initiate and lead ACP discussions at their respective practices (2014 to 2015). Following the intervention, we conducted interviews with patients to explore their experience of engaging in ACP in the general practice setting. Thematic analysis was used to inductively code transcripts and identify key themes from semi-structured interviews with patients.
RESULTS: Six major themes relating to patient experiences of GPN-facilitated ACP were identified: working through ideas, therapeutic relationship with nurses, significance of making wishes known, protecting family from burden, autonomy in decision-making, and challenges of family communication. The patients valued the opportunity to speak about issues that are important to them with the GPN who they found to be compassionate and caring. The patients felt that ACP would lead to significant benefits not only to themselves but also for their family. Despite encouragement to involve other family members, most patients attended the ACP discussions alone or as a couple; many did not see the relevance of their family being involved in the discussions. Some patients felt uncomfortable or reluctant in communicating the results of their discussion with their family.
CONCLUSIONS: With adequate training and support, GPNs are able to initiate and facilitate ACP conversations with patients. Their involvement in ACP can have significant benefits for patients. Psychosocial and relational elements of care are critical to patient satisfaction. Our findings show that some patients may feel uncomfortable or reluctant to communicate the results of their ACP discussions with their family. A future larger study is required to verify the findings of this pilot study.
OBJECTIVES: Patients with colorectal cancer undergoing palliative treatment receive extensive treatment-related information throughout their disease trajectory. We aimed to explore the experiences of patients with incurable colorectal cancer while in palliative care and their reflections on the information provided by physicians and nurses. Our main focus was the patients' thoughts about how information about disease status and life expectancy was communicated, from the first time that they were informed about the incurable nature of their disease through to postsurgery palliative treatment.
SETTINGS: Patients with colorectal cancer receiving palliative chemotherapy.
RESEARCH DESIGN: We used a qualitative approach, and the data were analysed by qualitative content analysis.
PARTICIPANTS: 20 patients (34-75 years of age) were included in the study; 12 received first-line chemotherapy and 8 received second-line chemotherapy. Eleven patients were treated by oncologists, and nine were treated by junior physicians.
RESULTS: Data-driven empirical analysis identified three themes: (1) inadequate information during the initial phase of the disease trajectory; (2) hope and information further into the disease trajectory and (3) personal, professional and organisational factors that influenced information and communication throughout the disease trajectory.
CONCLUSION: The participants' experience of being told for the first time that they had an incurable disease was perceived as inadequate, while postsurgery palliative chemotherapy, physicians and nurses offered hope. The participants preferred customised information about their treatment and likely future prospects and physicians and nurses who took a holistic and compassionate approach focusing on their lifeworld. To be a sensitive, holistic and compassionate physician or nurse requires knowledge and confidence. To achieve this requires training and guidance at universities and in hospitals.
Objective: Hospice nurses frequently encounter patients and families under tremendous emotional distress, yet the communication techniques they use in emotionally charged situations have rarely been investigated. In this study, researchers sought to examine hospice nurses' use of validation communication techniques, which have been shown in prior research to be effective in supporting individuals experiencing emotional distress.
Method: Researchers performed a directed content analysis of audiorecordings of 65 hospice nurses' home visits by identifying instances when nurses used validation communication techniques and rating the level of complexity of those techniques.
Result: All nurses used validation communication techniques at least once during their home visits. Use of lower level (i.e., more basic) techniques was more common than use of higher level (i.e., more complex) techniques.
Significance of Results: Although hospice nurses appear to use basic validation techniques naturally, benefit may be found in the use of higher level techniques, which have been shown to result in improved clinical outcomes in other settings.