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.     

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     

基于“一卡通”的自助医疗服务系统

本文阐述我院基于＂一卡通＂自助医疗服务系统的构建及功能。通过应用该系统,改善了患者就诊体验,提高了就诊效率,提升了患者满意度,具有明显的社会效益。     

Advance Care Planning Conversations

Goals-of-care conversations should be a regular part of a nurse practitioner’s practice. These conversations are critical to understand what types of treatments patients want at the end of life. There has been significant policy development over the last 50 years related to advance care planning, including current reimbursement for these conversations. In this report I discuss advance care planning in the context of policy development, current reimbursement requirements, barriers for patients and providers, and resources for skill development.     

高血压健康教育研究进展

高血压是一种典型的慢性疾病,要全面有效地控制高血压,除使用药物外,健康教育至关重要。现就高血压健康教育的需求、模式、内容、效果评价等方面进行综述,提出存在的问题并探讨今后高血压健康教育的发展方向。     

Advance Directives in Hospitalized Patients: A Retrospective Cohort Study

The purpose of this study was to examine processes for advance directives (ADs) in hospitalized patients to inform improvements in practice and policy. This was a retrospective study examining electronic records of 5,330 inpatients admitted over a 3-month period. During admission, 63.5% of patients were queried, with 37.2% of patients having ADs and only 14.4% available in the record. Older age and Medicare insurance were associated with having ADs. Opportunities exist for nurse practitioners to change structure and processes related to ADs improving completion and availability.     

Current Status of Palliative and Terminal Care for Patients with Primary Malignant Brain Tumors in Japan

Palliative care and advance care planning (ACP) from the first diagnosis of glioblastoma are important. This questionnaire survey was conducted to understand the current status of palliative care for brain tumors in Japan. Representative characteristics of Japan in comparison with Western countries (P <0.01) are described below: (1) Gender ratio of male in physicians who treat brain tumors in Europe and the United States/Canada are about 70%, but 94% in Japan. (2) The specialty is predominantly neurosurgeon (93%) in Japan. The ratio of neurologists is predominantly 40% in Europe. In the United States/Canada, neurologist (27%) and neurosurgeon (29%) are main parts. (3) Years of medical experience over 15 in physicians is 73% in Japan. Proportions of those with over 15 years are 45% in Europe and 30% in the United States/Canada. (4) In practicing setting, the rate of academic medical centers is about 80% in Europe and the United States/Canada, and ~60% in Japan. Representative differences compared with past domestic data (2007) (P <0.01): (1) In glioblastoma, the rate of explaining about median survival time increases from 39% (2007) to 80% (2018). Explanation about medical conditions to the patient himself with his family increases from 20% (2007) to 39% (2018). (2) Place of death: The rate at hospital is decreasing from 96% (2007) to 79% (2018) and at home is increasing from 3% (2007) to 10% (2018) (3) The rate of ventilator in adult has decreased from 74% (2007) to 54% (2018), but nasal tube feeding has remained unchanged from 62% (2007) to 60% (2018). These results will be shared with physicians to make better care systems for patients with brain tumors.     

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.