When approaching end of life, unnecessary hospital admissions and cumbersome interventions can negatively impact quality of life for an individual with dementia, with physical comfort and personal dignity being jeopardised. It can be traumatic for the individual and their loved ones, and expensive for families and the NHS. With increasing numbers of people living to an older age with multiple, complex co-morbidities, possibly super-imposed on dementia, this issue is set to increase with projected figures indicating people with dementia is to reach 1 million by 20251.
Advance Care Planning (ACP) can work towards addressing this issue, providing a forum to express an individual’s wishes regarding treatment and preferred place of care when they are unable to do so independently. This may help them to avoid unwanted and unnecessary hospital admissions.
It is important for health professionals, family and friends to be aware of an individual’s preferences and beliefs, it helps to reduce worry and stress if treatment is required in times of crisis. It is also particularly important for people living with dementia, as sharing their wishes with relevant people should offer reassurance that their care will be guided by their values and wishes when they may be unable to contribute to the decision making.
ACP can be as simple as an open and honest conversation with a trusted individual and health or social work professional, to documenting wishes with an ACP document, Advance Directive, DNACPR and assigning Power of Attorney. Documenting wishes is preferred as it encourages open conversation and is more likely to be shared with professionals and family, reduces ambiguity and is more likely to be followed. Having expectations documented can reduce carer burden, family stress and guilt when making decisions as they will have input from the individual. It is also cited that the ACP process may offer the opportunity to resolve interpersonal differences contributing to a comfortable end of life experience for all2.
However there are a number of barriers to ACP being carried out and recorded efficiently in a manner that is accessible; current practice is varied and ACP is not routinely incorporated into clinical or social work practice. There are several reasons cited in the literature including: time constraints, personal feelings of the practitioner, cultural sensitivities, family discomfort, practitioners not initiating conversations, fear and lack of awareness3.
Lund, Richardson and May4 (2015) suggest that ACP should be normalised and incorporated into routine practice, this is more likely to succeed when ACP is workable within the complex time pressured workflow, however to begin this process practitioners require knowledge. Armed with knowledge the health or social work professional can feel more confident and install confidence in the individual and their family or friends as well as signpost to relevant information.
If you would like to learn more about Advanced Care Planning, come along to the DSDC's new online course: Advance Care Planning for people with dementia. This new format has been designed for you to work through the materials (aproximately 6 hours) at your leisure over the course of a week. Join us and learn something new!
1 https://www.dementiastatistics.org/statistics-about-dementia/prevalence/ [Accessed: 28/08/2019]
2 Rhee, J.J., Zwar, N.A. and Kemp, L.A. (2013) Advance care planning and interpersonal realtionships: a two-way street. Family Practice, 30, pp. 219-226.
3 Curtis, J.R., Engelberg, R., Young, J.P., Vig, L.K., Wenrich, M.D. et al. (2008) An approach to understanding the interaction of hope and desire for specific prognostic information among individuals with chronic obstructive pulmonary disease or advanced cancer. Journal of Palliative Medicine, (11), pp. 610-620.
4 Lund, S., Richardson, A. and May, C. (2015) Barriers to Advance Care Planning at the End of Life: An Explanatory Systematic Review of Implementation Studies. Plos One, 10 (2), 28/08/2019. Available: https://journals.plos.org/plosone/article/file?id=10.1371/journal.pone.0116629&type=printable [Accessed: 28/08/2019].
Barnes, K.A., Barlow, C.A., Harrington, J., Ornadel, K., Tookman, A. and King, M.e.a. (2011) Advance care planning discussions in advanced cancer: analysis of dialogues between patients and care planning mediators. Palliative Supportive Care, (9), pp. 73-79.
Detering, K.M., Hancock, A.D., Reade, M.C. and Silvester, W. (2010) The impact of advance care planning on end of life care in elderly patients: a randomised controlled trial. British Medical Journal, , pp. 1345.
Schickedanz, A.D., Schillinger, D., Landefeld, C.S., Knight, S.J., Williams, B.A. and Sudore, R.L. (2009) A clinical framework for improving the advance care planning process: start with patients' self identified barriers. Journal of American Geriatric Society, 57, pp. 31-39.