Qualitative investigation of patient and carer experiences of everyday legal needs towards end of life

Abstract

Background

Legal issues are common in chronic illness. These include matters of daily life, such as problems with employment, finances and housing, where rights or entitlements are prescribed by law. They also include planning ahead, for example, making a Lasting Power of Attorney. However, the nature, impact and management of legal needs in the context of end of life care are not known. This study investigated these from the perspectives of patients and carers.

Methods

Patients, with estimated prognosis 12 months or less, and carers were recruited from two sites: day services within an urban hospice and primary care in an area of deprivation in North-East England. Semi-structured interviews explored the nature and impact of legal issues, access to appropriate support and unmet needs. Thematic analysis of data was undertaken.

Results

Twenty-seven interviews were conducted with 14 patients (10/14 hospice) and 13 carers (7/13 hospice). Five were patient-carer dyads. All participants had experienced problems raising legal issues, which generated significant practical and psychological challenges. All had struggled to access support for social welfare legal issues, describing not knowing what, who, or when to ask for help. All participants accessed some support, however routes, timing and issues addressed were variable. Facilitators included serendipitous triggers and informed healthcare professionals who offered support directly, or signposted elsewhere. A range of professionals and organisations provided support; resolution of issues conferred substantial benefit. The majority of participants identified unresolved legal issues, predominantly related to planning ahead. The challenge of facing increased dependency and death proved a key barrier to this; informed and compassionate healthcare professionals were important enablers.

Conclusion

Everyday legal needs are a common and distressing consequence of life-limiting illness, affecting patients and carers alike. This study identified inconsistent approaches but practical and psychological benefit when needs were met. Healthcare professionals were central to meeting social welfare legal needs and facilitating effective planning, with important roles as ‘critical noticers’, trusted intermediaries and compassionate communicators. Increased awareness, clearer pathways to support and closer service integration are needed to meet legal needs as a component of holistic care.