Hawkins Colette, Kirby Margaret, Genn Hazel, Close Helen
St Oswald's Hospice, Newcastle upon Tyne, UK.
Population Health Sciences Institute, Newcastle University, Newcastle upon Tyne, Tyne and Wear, UK.
Integr Healthc J. 2020 Sep 3;2(1):e000029. doi: 10.1136/ihj-2019-000029. eCollection 2020.
Little is known about legal needs in the context of life-limiting illness, particularly the need for advice concerning legal arrangements, rights and entitlements. This UK-based multiagency stakeholder engagement exercise scoped legal needs associated with life-limiting illness and identified support structures, gaps and opportunities for practice improvement.
Snowball sampling generated a stakeholder group from a wide range of regional and national organisations involved in care of people with life-limiting illness, spanning health, social care, legal support, advice, charities, prison services as well as patient and carer representatives. A coproduced survey of three open questions generated qualitative data, interpreted by thematic analysis.
Stakeholders reported a broad spectrum of problems and needs raising legal issues, with no consistency of definition. A classification is proposed, identifying matters concerning rights and entitlements of patients/carers in day-to-day life and decisions around care, both immediate and in the future, as well as professional responsibilities in delivering personalised care. The support structures identified were predominantly online literature, although there was some availability of remote and face-to-face services. Limited awareness of the issues, variable service configuration, fragmentation of care and inequitable access were identified as barriers to support. Stakeholders recognised the need for education and closer multiagency working.
'Legal needs' incorporate wide-ranging issues, but there is inconsistency in perceptions among stakeholders. Practice is variable, risking unmet need. Opportunities for improvement include more formal integration of social welfare legal services in the health context, generating clearer pathways for assessment and management.
对于临终疾病背景下的法律需求，尤其是关于法律安排、权利和应享权益方面的咨询需求，人们了解甚少。这项基于英国的多机构利益相关者参与活动，界定了与临终疾病相关的法律需求，并确定了支持结构、存在的差距以及改进实践的机会。
通过滚雪球抽样从广泛的区域和国家组织中产生了一个利益相关者群体，这些组织涉及临终疾病患者的护理，涵盖卫生、社会护理、法律支持、咨询、慈善机构、监狱服务以及患者和护理者代表。一项针对三个开放性问题的联合制作的调查产生了定性数据，并通过主题分析进行解读。
利益相关者报告了引发法律问题的广泛问题和需求，且定义并不一致。提出了一种分类方法，确定了与患者/护理者在日常生活中的权利和应享权益以及围绕当前和未来护理决策相关事项，以及提供个性化护理方面的专业责任。所确定的支持结构主要是在线文献，尽管也有一些远程和面对面服务。对这些问题的认识有限、服务配置多变、护理碎片化以及获取服务不公平被确定为支持的障碍。利益相关者认识到需要开展教育并加强多机构合作。
“法律需求”包含广泛问题，但利益相关者的认知并不一致。实践存在差异从而有需求未得到满足的风险。改进机会包括在卫生背景下更正式地整合社会福利法律服务，为评估和管理创造更清晰的途径。
