Higginson I, Wade A, McCarthy M
Department of Community Medicine, University College and Middlesex School of Medicine, London.
BMJ. 1990 Aug 4;301(6746):277-81. doi: 10.1136/bmj.301.6746.277.
To investigate the current problems and needs of terminally ill cancer patients and their family members, and to discover their views of hospital, community, and support team services.
Prospective study of patients and families by questionnaire interviews in the patients' homes.
Inner London and north Kent (London suburbs).
65 Patients, each with a member of their family or a career.
Ratings of eight current problems and ratings and comments on three services-hospital doctors and nurses, general practitioners and district nurses, and the support team staff-obtained after a minimum of two weeks' care from palliative care support teams.
Effect of anxiety on the patient's nearest career. and symptom control were rated as the most severe current problems by both patients and families; a few patients and families identified other severe problems. Families' ratings of pain control, symptom control, and effect of anxiety on the patient were significantly worse than the patients' ratings (p less than 0.05). Support teams received the most praise, being rated by 58 (89%) patients and 59 (91%) of family members as good as excellent. General practitioners and district nurses were rated good or excellent by 46 (71%) patients and 46 (71%) family members, but six (9%) in each group rated the service as poor or very bad, and ratings in the inner London district were significantly worse than those in the outer London district. Hospital doctors and nurses were rated good or excellent by 22 (34%) patients and 35 (54%) of family members, and 14 (22%) patients and 15 (23%) family members rated this service as poor or very bad. Negative comments referred to communication (especially at diagnosis), coordination of services, the attitude of the doctor, delays in diagnosis, and difficulties in getting doctors to visit at home. Family members were more satisfied with the services than were patients.
Palliative care needs to include both the patient and family because the needs of the family may exceed those of the patient. Support teams and some hospital and community doctors and nurses met the perceived needs of dying patients and families, but better education and organisation of services are needed.
调查晚期癌症患者及其家庭成员当前存在的问题和需求，并了解他们对医院、社区及支持团队服务的看法。
通过在患者家中进行问卷调查访谈对患者及其家庭进行前瞻性研究。
伦敦市中心和肯特郡北部（伦敦郊区）。
65名患者，每名患者均有一名家庭成员或一名护理人员陪同。
在接受姑息治疗支持团队至少两周的护理后，对八个当前问题的评分以及对三项服务——医院医生和护士、全科医生和社区护士、支持团队工作人员——的评分及评论。
焦虑对患者最亲近护理人员的影响以及症状控制被患者和家属评为当前最严重的问题；少数患者和家属指出了其他严重问题。家属对疼痛控制、症状控制以及焦虑对患者的影响的评分明显低于患者的评分（p<0.05）。支持团队获得的赞扬最多，58名（89%）患者和59名（91%）家属将其评为良好或优秀。46名（71%）患者和46名（71%）家属将全科医生和社区护士评为良好或优秀，但每组中有6名（9%）将该服务评为差或非常差，伦敦市中心地区的评分明显低于伦敦市外地区。22名（34%）患者和35名（54%）家属将医院医生和护士评为良好或优秀，14名（22%）患者和15名（23%）家属将该服务评为差或非常差。负面评论涉及沟通（尤其是在诊断时）、服务协调、医生态度、诊断延迟以及医生上门探访困难。家属对服务的满意度高于患者。
姑息治疗需要兼顾患者和家属，因为家属的需求可能超过患者。支持团队以及一些医院和社区医生及护士满足了临终患者及其家属的部分需求，但仍需要更好的教育和服务组织。
