Equipping Patients for End-of-Life Decisions: The Need to Redesign Advance Directives

Dear Editor,

I am extremely grateful to the authors for outlining the importance and benefits of palliative care for patients with dementia (1).

The majority of the population have ideas about how they wish to be treated at the end of life, yet the completion of Advance Directives is infrequent, and is disproportionately utilised by high-income and high-education groups. (2,3)

When patients do provide advance directives, guidance is either non-specific and ambiguous, or is too specific to apply to the current state of morbidity. This often leaves difficult decisions to be made by the medical team and/or close family members.

Early access to palliative care support workers could be prompted following the diagnosis of a terminal illness such as dementia. Part of this pathway could also include discussions regarding the production of an advance directive and appointment of a healthcare proxy and/or Lasting Power of Attorney. Patients with religious beliefs or spiritual preferences may be encouraged to have further discussions with a leader or mentor.

As older people become more technologically literate, the introduction of an online advance directive creation tool becomes more appropriate, though it would fail to address the differential utilisation of advance directives between high and low income groups (3). Incentives by private health insurance companies to complete advance directives may also increase overall use, but would only encourage use among the highest earners. Public awareness campaigns targeting groups with infrequent use of advance directives and offering free support may yield greater uptake and reduce inequalities in access.

Worries about abuse of advance directives can be partially addressed by offering General Practitioners or Community Palliative Care teams the opportunity to include a set of coded descriptions or a written summary of a patient’s wishes in the Summary Care Record. Instructions to upload scans are already included in many advance directive templates, but accessing scans of an advance directive is often not possible in hospitals, especially out of hours. The Summary Care Record tells us only whether an advance directive has been completed. Such interventions would be useful in improving confidence in the validity of an advance directive and improve access to advance directives out of hours.

Practitioners maintain concerns about the usefulness of advance directives in their current format (4,5). This should not discourage their use, but should enable and encourage discussion about what wishes cannot be communicated by the completion of an advance directive.

I wonder whether it is time to consider a new format for advance directives by a commissioning body, and for funding to subsequently be directed toward increasing their use in populations with historically low uptake. I would anticipate that the reduction in futile and unwanted treatments would make this both a cost-effective practice and one which ameliorates the experience of terminal events and end-of-life care for patients and their families.

1. Yorganci E, Sleeman K E. Palliative care can benefit people with dementia BMJ 2023; 380 :p754 doi:10.1136/bmj.p754
2. Sahm S, Will R, Hommel GAttitudes towards and barriers to writing advance directives amongst cancer patients, healthy controls, and medical staffJournal of Medical Ethics 2005;31:437-440.
3. Huang IA, Neuhaus JM, Chiong W. Racial and Ethnic Differences in Advance Directive Possession: Role of Demographic Factors, Religious Affiliation, and Personal Health Values in a National Survey of Older Adults. J Palliat Med. 2016 Feb;19(2):149-56. doi: 10.1089/jpm.2015.0326. PMID: 26840850; PMCID: PMC4753625.
4. Time to move on from advanced directives BMJ 2007; 335 :68 doi:10.1136/bmj.39268.646100.80
5. Moore N, Detering KM, Low T, et alDoctors’ perspectives on adhering to advance care directives when making medical decisions for patients: an Australian interview studyBMJ Open 2019;9:e032638. doi: 10.1136/bmjopen-2019-032638