Motor neurone disease: a hospice perspective.

OBJECTIVE--To describe and evaluate the management of patients with motor neurone disease from the perspective of a hospice. DESIGN--Retrospective analysis of hospice medical and nursing notes. SETTING--Established 62 bed teaching and research hospice. SUBJECTS--124 patients with motor neurone disease cared for by the hospice between January 1980 and November 1990. MAIN OUTCOME MEASURES--Patient profile; functional status; symptom control and use of opioids; insight; mode and management of death. RESULTS--124 patients (67 women, 57 men) had a mean age 63.9 years. The median length of admission was 61.5 days (range 1 to 2147). 84 patients (68%) were aware of their diagnosis and its implications when first seen by a hospice doctor. Functionally, the patients were very dependent. Symptoms such as pain, dyspnoea, and insomnia were major problems that responded well to opioids. Many patients were noted to deteriorate "suddenly," and in 58% of cases death occurred within 24 hours of this deterioration. When dying, 106 patients (94%) were peaceful and settled. 101 patients (89%) received opioids during this dying period. No patient chocked to death. CONCLUSIONS--Although motor neurone disease is an uncommon disorder, many of its symptoms occur commonly in medical practice and must be actively treated. Opioids are both safe and effective for such treatment. The term chocking is both inaccurate and inappropriate in describing the cause of death in motor neurone disease and its use should be abandoned.     

Mining electronic health records: towards better research applications and clinical care

Clinical data describing the phenotypes and treatment of patients represents an underused data source that has much greater research potential than is currently realized. Mining of electronic health records (EHRs) has the potential for establishing new patient-stratification principles and for revealing unknown disease correlations. Integrating EHR data with genetic data will also give a finer understanding of genotype-phenotype relationships. However, a broad range of ethical, legal and technical reasons currently hinder the systematic deposition of these data in EHRs and their mining. Here, we consider the potential for furthering medical research and clinical care using EHR data and the challenges that must be overcome before this is a reality.