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

Close, Helen, Sidhu, Kamal, Genn, Hazel, Ling, Jonathan and Hawkins, Colette (2021) Qualitative investigation of patient and carer experiences of everyday legal needs towards end of life. BMC Palliative Care, 20 (1). ISSN 1472-684X

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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.

Item Type: Article
Subjects: Sciences > Health Sciences
Divisions: Faculty of Health Sciences and Wellbeing
Depositing User: Jonathan Ling
Date Deposited: 30 Mar 2021 11:22
Last Modified: 30 Mar 2021 11:22
URI: http://sure.sunderland.ac.uk/id/eprint/13312
ORCID for Helen Close: ORCID iD orcid.org/0000-0001-5024-4386
ORCID for Jonathan Ling: ORCID iD orcid.org/0000-0003-2932-4474

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