End of life decision making when home mechanical ventilation is used to sustain breathing in Motor Neurone Disease: patient and family perspectives

BackgroundMotor Neurone Disease (MND) leads to muscle weakening, affecting movement, speech, and breathing. Home mechanical ventilation, particularly non-invasive ventilation (NIV), is used to alleviate symptoms and support breathing in people living with MND. While home mechanical ventilation can alleviate symptoms and improve survival, it does not slow the progression of MND. This study addresses gaps in understanding end-of-life decision-making in those dependent on home mechanical ventilation, considering the perspectives of patients, family members, and bereaved families.MethodsA UK-wide qualitative study using flexible interviews to explore the experiences of people living with MND (n = 16), their family members (n = 10), and bereaved family members (n = 36) about the use of home mechanical ventilation at the end of life.ResultsSome participants expressed a reluctance to discuss end-of-life decisions, often framed as a desire to “live for the day” due to the considerable uncertainty faced by those with MND. Participants who avoided end-of-life discussions often engaged in ‘selective decision-making’ related to personal planning, involving practical and emotional preparations. Many faced challenges in hypothesising about future decisions given the unpredictability of the disease, opting to make ‘timely decisions’ as and when needed. For those who became dependent on ventilation and did not want to discuss end of life, decisions were often ‘defaulted’ to others, especially once capacity was lost. ‘Proactive decisions’, including advance care planning and withdrawal of treatment, were found to empower some patients, providing a sense of control over the timing of their death. A significant proportion lacked a clear understanding of the dying process and available options.ConclusionsThe study highlights the complexity and evolution of decision-making, often influenced by the dynamic and uncertain nature of MND. The study emphasises the need for a nuanced understanding of decision-making in the context of MND

Paramedics’ understanding and interpretation of advance care planning: a pilot questionnaire-based study

Background Paramedics are often the first healthcare professionals to respond to changes in a patient’s condition. However, there has been no previous studies into paramedics’ understanding of legislation relating to advance care planning (ACP), or how they interpret ACP documents. The aim of this pilot study was to find out what knowledge paramedics had about ACP legislation, and how uniformly they interpreted ACP documents. Methods We invited paramedics to complete a questionnaire about ACP. There were four true-or-false questions about the legal aspects of ACP. The questionnaire also included a hypothetical scenario and simulated Do Not Attempt Cardio-Pulmonary Resuscitation form related to the scenario. The paramedics were asked whether they would, or would not, start CPR in that scenario. Results Fifteen paramedics completed the questionnaire. Five reported that they had previously been taught about legal aspects of advance care planning. The correct answers to the true false questions varied between 67% and 87%. Six paramedics completed the scenario question. Five indicated that they would not start CPR. One paramedic indicated that they would start CPR. Conclusions This pilot study indicates that up to third of paramedics might misunderstand some of the legal aspects relating to ACP. It also indicates a lack of uniformity in how paramedics interpret ACP documents. This study should raise awareness that ACP documents might not always be interpreted as intended. We will use these finding to explore the interpretation of ACP documents in a larger cohort. https://spcare.bmj.com/content/9/Suppl_1/A29.2 This is an Open Access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/ DOI http://dx.doi.org/10.1136/openhrt-2015-00028

Lung sounds:how doctors draw crackles and wheeze

Abstract Background The content of medical records is a potential source of miscommunication between clinicians. Doctors' written entries have been criticised for their illegibility and ambiguity, but no studies have examined doctors' drawings that are commonly used for recording auscultation findings. Objective To compare doctors' drawings of auscultation findings, based on identical clinical information. Methods Doctors at the Royal London Hospital and a group of London based general practitioners (GPs) documented a respiratory examination with a drawing of the auscultation findings of bilateral mid and lower zone wheeze and right lower zone crackles. The graphical properties of each drawing were examined and the use of written captions and labels recorded. Drawings were classified into styles according to the use of symbols (defined as discrete characters or icons) and shading (cross-hatching, speckling or darkening) to depict the auscultation findings. The study was conducted between September and November 2011. Results Sixty-nine hospital doctors and 13 GPs participated. Ten drawing styles were identified from 78 completed drawings. Ten distinct symbols and a range of shading techniques were used. The most frequent style (21% of drawings) combined ‘X’ symbols representing crackles with musical notes for wheeze. There was inconsistency of representation across the drawings. Forty-seven (60%) drawings used an ‘X’ symbol exclusively to represent crackles, but six (8%) used ‘X’ only to represent wheeze, and 10 (13%) used ‘X’ to represent both findings. 91% of participants included captions or labels with their drawing. Conclusions There was wide variation in doctors' drawings of identical auscultation findings, and inconsistency in the meaning of symbols both between and within drawings. Doctors risk incorrectly interpreting each other's drawings when they are not effectively labelled. We recommend doctors consider using a written description instead, or draw different findings with distinct symbols or shading, labelling all findings clearly. </jats:sec

Paramedics and serious illness: communication training

Abstract Objectives The need to empower Ambulance Service staff at the point of delivery of end of life care (EoLC) is crucial. We describe the delivery, outcomes and potential impact of the Serious Illness Conversation project delivered to Welsh Ambulance Service Trust (WAST) staff. Over an 18-month period, 368 WAST staff attended face-to-face teaching, which included serious illness conversation communication skills, symptom control and ‘shared decision making’. Method Data collected from WAST staff were used to gain insight on perception of their role and challenges within the context of EoLC, understand the impact of teaching on self-confidence and identify impact on the wider service. A mixed methods approach was used for data analysis. Results WAST staff view themselves in several important roles, acting as ‘facilitators’ to patient-centred, seamless care, providing support, liaison between services and practical help in patient care at the end of life. The difficult questions and situations pertaining to EoLC were related to discussions on death and dying and managing expectation. The predominant barriers identified related to communication. Quantitative outcomes on the six communication domains indicate statistically significant improvement in self-assessed confidence. The overall impact to the wider ambulance service suggests a trend towards better use of resources. Conclusion The perceived roles and challenges identified by paramedics can help in customising training objectives. The initial outcomes from the ongoing project with WAST demonstrate increased confidence in handling communication issues. Initial successive surveys suggest teaching is making a real life impact on patient care at end of life. https://spcare.bmj.com/content/12/e2/e248 This is an Open Access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/ DOI http://dx.doi.org/10.1136/openhrt-2015-00028

Palliative medicine doctor and paramedic join to form a palliative care rapid response car. A pilot study

Aim To pilot a palliative medicine doctor and paramedic working together within the community to respond to urgent ‘999’ calls. Is the concept feasible, beneficial to patients and cost effective? Method Four palliative medicine doctors across South Wales partnered the End of Life Care Lead Paramedic for WAST (EO’B) to form a PCRRC. Potential patients were identified from the list of contemporaneous logged calls for paramedics to respond to. The PCRRC responded to any calls where it seemed likely that it could have a positive impact upon the care of patients. Result During the four pilot shifts the PCRRC attended four calls and gave telephone advice to three calls. In total 21 hours of doctor time was spent ‘on the road’. The anecdotal feedback from the four doctors is mixed. There was not felt to be an overwhelming need for the service but on two occasions it did have an impact upon decision making, including two decisions not to admit patients. The experience improved doctors’ insight into paramedic care of patients with palliative care needs. Conclusion This is a small feasibility study with inherent biases. The PCRRC concept is feasible and can benefit acute clinical decision making but this pilot suggests that it is unlikely to be an efficient use of resources. There are benefits of the PCRRC model for learning, co-ordination of care, and facilitating shared decision making. We are considering other interventions to improve the interaction between palliative care teams and WAST. https://spcare.bmj.com/content/9/Suppl_1/A43.1 This is an Open Access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/ DOI http://dx.doi.org/10.1136/openhrt-2015-00028

ANGPTL4 E40K and T266M Effects on Plasma Triglyceride and HDL Levels, Postprandial Responses, and CHD Risk

Background-Angiopoietin-like 4 is a dual-function protein: an inhibitor of LPL, influencing plasma triglycerides (TGs), with angiogenic properties. We examined the association of common ANGPTL4 variants with CHD traits and risk in 5 studies (13 527 individuals). Methods and Results-The effects on plasma lipids of 6 tagging SNPs and the recently identified E40K were examined in a study of 2772 men. Only T266M (rs1044250, MAF = 30%) and E40K (MAF = 2%) were significantly associated with TG-lowering (-10.4%, P <0.004 and -20.4%, P <0.0001), respectively. T266M no longer showed significant associations when K40 carriers (K40+) were excluded (P = 0.2). Combining data from 5 studies confirmed the TG-lowering effect of K40+ (weighted mean difference: -.12 [95% CI -.18, -.05] mmol/L TG P = 0.0001). Surprisingly, in the 3 prospective studies, the combined OR for CHD was 1.48 (1.11 to 1.96, P = 0.007), independent of TG. In individuals with a paternal history of MI (n = 332) T266M, but not E40K, showed effects on postprandial AUC TG and glucose (P = 0.009 and P = 0.017, respectively) compared to controls (n = 370). Conclusion-Although associated with an atheroprotective lipid profile, E40K was associated with increased CHD risk, suggesting Angptl4 influences parameters beyond lipid levels. T266M showed effects only under conditions of postprandial stress. The functionality of these potential "loss-of-function" variants needs validation. (Arterioscler Thromb Vasc Biol. 2008;28:2319-2325.