Most hospices have supported people needing treatment and care who do not have capacity to consent to it, who need constant care and would not be allowed to leave should they try. DoLS legislation was introduced to safeguard such people from misuse of restrictions to their freedoms. Hospices have varied in their interpretation of/application of DoLS legislation, however what is widely shared is that the use of DoLS has caused distress to families, and delays to families in making arrangements after death. Our own experience of applying for DoLS for hospice inpatients is limited (4/374 admissions from April 2015-end March 16) but an increasing number of people we support in the community have a DoLS Standard Authorisation; usually care home residents with an illness affecting cognition (e.g. dementia; cancer affecting the brain). Death demands a Coroner’s investigation and inquest because death under a DoLS = death in custody. We have been concerned to better support families whose relative requires a DoLS, and to better prepare them for obligatory processes after death.
We are developing a leaflet using the experiences of a relative whose late husband had a DoLS, a carer who was distressed by post-death processes, the Local Authority, police and coroner. All have commented that an explanatory leaflet which is easy to understand would be enormously helpful. Our aim is to develop something to really support carers both when a DoLS is authorised and when their loved one dies, towards a more supported care experience and smoother bereavement. It will explain simply the reason for and value of a DoLS, help support the maximising of freedoms for someone with a DoLS and prepare families for processes after death. Evaluation will be via our service users group, service users and colleagues from several local hospices who have shared similar experiences of finding the issues complex to explain.
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