Advance directives: questionnaire survey of NHS trustsBMJ 2000; 320 doi: https://doi.org/10.1136/bmj.320.7226.24 (Published 01 January 2000) Cite this as: BMJ 2000;320:24
- Correspondence to: M Judd
- Accepted 7 September 1999
An advance directive gives patients the legal right to give or withhold consent to specific medical treatments prospectively. This provides them with some reassurance about the dying process being managed in accordance with their wishes. Apprehension could be further allayed if it were known that the legal status of advance directives was consistently applied across the NHS.
Guidance on advance statements about medical treatment was initially published by the BMA in 1995.1 The legally binding status of advance directives was reiterated by Luttrell in 1996.2 Nevertheless, in 1998 a survey of 214 general practitioners found that only 49% were aware that advance directives carry legal force.3 In 1999 the NHS Executive issued guidance on withholding consent to treatment4 and the General Medical Council issued guidance on the current legal position on advance directives.5 It remains unclear how NHS trusts have responded to this guidance and to what extent people can expect that their advance directive would be respected if they were an NHS patient who was dying.
We carried out a survey to discover what provision trusts have made to recognise advance directives through actual or intended development of policies.
Methods and results
We developed a questionnaire and sent it with a covering letter explaining the background and objectives of the study to chief executives or medical directors of 463 NHS trusts. We received responses from 247 (53%) trusts (table)—for acute services (121), community services (55), and acute and community services combined (52); children (3); mental health and learning difficulties (9); and other services (7). Results showed that 37 trusts had already developed policies; 87 intended to or were in the process of doing so; 187 believed that national guidelines would be useful; 129 had requested illustrative copies of trust guidelines; and 70 did not intend to develop policies.
Most of the 37 trusts that had already developed a policy provided acute services; nine provided both acute and community services. Seventeen of these trusts provided their policies for analysis. Content analysis showed that the policies varied widely in approach, content, and consistency in understanding of the legal issues.
Of the 124 trusts that had developed or intended to develop policies, 98 provided acute services alone or combined acute and community services. Nearly one third of trusts that had already developed a policy provided information on how advance directives may be drawn up and guidance for any staff who feel unable to comply with their policy. One fifth of these advised patients to notify staff about their advance directive and provided legal guidance for staff.
Of the 70 trusts not intending to develop policies, 43 provided acute services, where a policy on advance directives is likely to be appropriate. Sixty three expressed interest in the development of national guidelines.
Altogether 187 trusts that responded believed that national guidelines on advance directives would be useful. Only half, however, indicated that they were taking action.
Around one quarter of all NHS trusts, mainly those providing acute services, had developed or intended to develop policies on advance directives. Few trusts provided information and advice for patients about advance directives. None routinely advised patients that advance directives may be discussed with ward staff.
Requests for copies of specimen trust guidelines indicated a generally high level of interest, but the number of acute trusts with no plans or intention to develop their own policy is a matter for concern. Although only half the trusts that responded were currently taking action, three quarters were in favour of national guidelines, which suggests that more trusts would consider addressing the issue if national guidelines were available.
National guidelines should be developed to support a consistent approach to end of life care across the NHS for patients with advance directives.
We thank the medical directors, directors of nursing, and others who responded on behalf of their trusts; trusts that provided copies of their policies; and the East Yorkshire Community NHS Trust, which allowed its policy to be circulated as an illustrative example
Contributors: The paper was written jointly by both authors. MJ had the original idea for the study. The questionnaire was developed jointly by PD and MJ. PD collated the responses and MJ analysed the data. MJ is the guarantor for this paper.
Funding No funding was obtained for the study. The Voluntary Euthanasia Society provided postage, paper, and help with distribution.
Competing interests The authors are members of the Voluntary Euthanasia Society and Doctors for Assisted Dying.