A Tool to Assess Patient and Surrogate Knowledge About the POLST (Physician Orders for Life-Sustaining Treatment) Program

ContextIt is especially important that patients are well informed when making high-stakes, preference-sensitive decisions like those on the Physician Orders for Life-Sustaining Treatment (POLST) form. However, there is currently no way to easily evaluate whether patients understand key concepts when making these important decisions.ObjectivesTo develop a POLST knowledge survey.MethodsExpert (n = 62) ratings of key POLST facts were used to select items for a POLST knowledge survey. The survey was administered to nursing facility residents (n = 97) and surrogate decision-makers (n = 112). A subset (n = 135) were re-administered the survey after a standardized advance care planning discussion to assess the scale's responsiveness to change.ResultsThe 19-item survey demonstrated adequate reliability (α = 0.72.). Residents' scores (x = 11.4, standard deviation 3.3) were significantly lower than surrogate scores (x = 14.7, standard deviation 2.5) (P < 0.001). Scores for both groups increased significantly after administration of a standardized advance care planning discussion (P < 0.001). Although being a surrogate, age, race, education, cognitive functioning, and health literacy were significantly associated with higher POLST Knowledge Survey scores in univariate analyses, only being a surrogate (P < 0.001) and being white (P = 0.028) remained significantly associated with higher scores in multivariate analyses.ConclusionThe 19-item POLST Knowledge Survey demonstrated adequate reliability and responsiveness to change. Findings suggest the survey could be used to identify knowledge deficits and provide targeted education to ensure adequate understanding of key clinical decisions when completing POLST.     

Symptomatic palliative care for children with neurodisability

Paediatric palliative care and neurodisability are two relatively new, evolving paediatric sub-specialities that have increasing relevance in the current paediatric landscape. For many people palliative care has been synonymous with end of life care, but in paediatrics it encompasses much more and is for all children with life-threatening or life-limiting conditions, from the point of diagnosis. This breadth of focus is demonstrated well through the interface between paediatric palliative care and paediatric neurodisability. In this article we explore this unique interface through the three domains of complex symptom management, advanced care planning and end of life care. We describe the practicalities involved in all three areas and highlight the importance of early referral and the process of “dual” or “parallel” planning. We cover in more depth the specific management of the symptoms: dystonia/abnormalities of muscle tone, seizures, pain, agitation, secretions, respiratory failure, and gut failure.     

关节镜技术的历史与新进展

现代的关节镜从膀胱镜演变而来，创伤小，适用广泛。近年膝关节镜技术在半月板病变处理上有逆行全切法等新方法，交叉韧带重建、软骨移植成为研究热点；关节镜技术除应用于肩关节及其它小间隙关节，还开展治疗弹响髓等关节外应用；个性化康复锻炼提高了手术疗效。     

Effects of Staff Training on Nursing Home Residents’ End-Of-Life Care: A Randomized Controlled Trial

ObjectivesThis trial examines the effects of end-of-life training on long-term care facility (LTCF) residents' health-related quality of life (HRQoL) and use and costs of hospital services.DesignA single-blind, cluster randomized (at facility level) controlled trial (RCT). Our training intervention included 4 small-group 4-hour educational sessions on the principles of palliative and end-of-life care (advance care planning, adverse effects of hospitalizations, symptom management, communication, supporting proxies, challenging situations). Training was provided to all members of staff. Education was based on constructive learning methods and included resident cases, role-plays, and small-group discussions.Setting and participantsWe recruited 324 residents with possible need for end-of-life care due to advanced illness from 20 LTCF wards in Helsinki.MethodsPrimary outcome measures were HRQoL and hospital inpatient days per person-year during a 2-year follow-up. Secondary outcomes were number of emergency department visits and cost of all hospital services.ResultsHRQoL according to the 15-Dimensional Health-Related Quality-of-Life Instrument declined in both groups, and no difference was present in the changes between the groups (P for group .75, adjusted for age, sex, do-not-resuscitate orders, need for help, and clustering). Neither the number of hospital inpatient days (1.87 vs 0.81 per person-year) nor the number of emergency department visits differed significantly between intervention and control groups (P for group .41). The total hospital costs were similar in the intervention and control groups.Conclusions and ImplicationsOur rigorous RCT on end-of-life care training intervention demonstrated no effects on residents’ HRQoL or their use of hospitals. Unsupported training interventions alone might be insufficient to produce meaningful care quality improvements.     

Integration of a palliative care specialist in an amyotrophic lateral sclerosis clinic: Observations from one center

Palliative care specialists can aid in the care of patients with amyotrophic lateral sclerosis (ALS). In this article, we describe our 1-year experience incorporating a palliative care specialist into the ALS multidisciplinary team. We describe our integration model, patient selection, and visit content. Of 500 total clinic patients, 74 (14.8%) were seen by the palliative care specialist in 1 year. Referral was most often triggered by advance care planning needs (91%). In the initial visit with the palliative care specialist, topics most frequently covered included goals of care (84%), anxiety/depression (35%), and medical decision-making about feeding tubes (27%) or tracheostomy (31%). Symptom management comprised a relatively small number of the visits, and duration of visits was limited by patient fatigue. Patients with complex goals of care may benefit from the input of a palliative care specialist, and unique integration models may help to facilitate care delivery. Muscle Nerve 60 : 137–140, 2019     

Condition-Specific Pamphlets to Improve End-of-life Communication in Long-term Care: Staff Perceptions on Usability and Use

Objectives

This article reports findings on the usability and staff use of 5 condition- specific pamphlets of high prevalence in long-term care (LTC): dementia, heart failure, chronic obstructive pulmonary disease, renal failure, and frailty. The pamphlets were created in response to residents', families', and staff's recommendations for activating early reflections and communication about end-of-life care.

A longitudinal communication approach in advanced lung cancer: A qualitative study of patients’, relatives’ and staff's perspectives

Communication and the care of patients with advanced cancer are a dynamic, interactive and challenging process, often characterised in every day practice by discontinuity and lack of coordination. The objective of this study was to explore the patients’ and family‐caregivers’ needs and preferences regarding communication, quality of life and care over the trajectory of disease. The second aim was to assess health professionals’ views on a longitudinally structured, forward‐thinking communication approach based on defined milestones. A qualitative approach was chosen incorporating semi‐structured interviews with nine patients with metastatic lung cancer and nine relatives, and focus groups with 15 healthcare providers from different professions involved in the care of these patients. Patients and relatives described a situation of shock and coping deficits with moments of insufficient communication and lack of continuity in care. Healthcare providers reported the strong need for improvement in communication within the team and between patients and professionals and welcomed the implementation of a longitudinal communication approach. Requirements for the implementation of a longitudinal communication approach include specific communication training with focus on the process that patients and relatives are involved in. Team‐building measures and the necessary flexibility to respect individuality in life should be incorporated.     

干燥综合征中抗M3R抗体的研究进展

干燥综合征(Sjgren’s syndrome,SS)是一种以侵犯外分泌腺为主的自身免疫性疾病,其发病机制可能与抗毒蕈碱乙酰胆碱3受体抗体(anti-M3R antibody,抗M3R抗体)相关,本文通过抗M3R抗体与毒蕈碱乙酰胆碱3受体(M3R)的结合表位,以及与SS的临床表现、治疗的关系,对抗M3R抗体在SS中的致病作用进行综述。