Author: Dr Nicola Cornally, University College Cork
Date of publication: March 2020
Keywords: Advance Care Directive, Advance Care Planning, Self-determination Theory, End-of-life Decision Making
Is it more important to try and outwit death at the end of life and use as much life sustaining measures to have one more day on this earth or is being comfortable, surrounded by loved ones, listening to your favourite music and being able to see the blue sky from the window in a room of your choosing, your idea of a good ending? The latter is described by most as the preferred option. However, in healthcare we strive to preserve life at all costs, and it is us [healthcare professionals] that sometimes find it hardest to just ‘let go’, not least because of the legal implications, in the absence of an Advance Care Directive. The mismatch between patient preferences and care provided at end of life has created a societal movement to ensure that end-of-life care is based on will and partiality of the recipient. Slowly but nonetheless progressively paternalism in healthcare has been replaced with a growing respect for patient autonomy. Patient involvement in medical decision-making is being encouraged, and Advance Care Planning serves to operationalize this at end-of-life.
We know that Advance Care Directives evolved out of the fear of unwelcome treatment. Research shows that Advance Care Directives and Advance Care Planning can improve satisfaction with end-of-life care and facilitate choice of place of death (Houben et al, 2014; Detering, 2010). In the past Advance Care Planning was seen as synonymous with the completion of an Advance Care Directives, however it is now acknowledged as an ongoing process and a way of engaging people in a discussion regarding what matters most. A recent Delphi consensus defined Advance Care Planning as ‘”a process that supports adults at any age or stage of health in understanding and sharing their personal values, life goals, and preferences regarding future medical care. The goal of Advance Care Planning is to help ensure that people receive medical care that is consistent with their values, goals and preferences during serious and chronic illness” (Sudore et al, 2017). An Advance Care Directive on the other hand can be described as an outcome of an Advance Care Planning conversation and is a statement of wishes (by a person with capacity) about future care, if specific circumstances arise and the person no longer has capacity to make care decisions (e.g. Dementia). Advance Care Directives only apply if the person has lost capacity and are legally binding in some countries.
Within the context of this definition Advance Care Planning can be described as a vehicle to support decision making at end of life and is conceptually aligned to the promotion of self-determination. Self-determination has been defined as “a process in which a person has control and legal/ethical rights and has the knowledge and ability to make a decision of his/her own free choice” (Ekelund et al, 2014). Self-determination in the context of palliative care has been defined as “a process of decision-making that includes personal appraisal, the support and advice of others, and activities that result in successful life closure, and peaceful death” (Bakitas 2005). Most individuals desire some degree of control over medical and technical power at the end of life (Wesley 1996). A theory of self-determination has been proposed in psychology literature (Ng, 2012) and is considered particularly useful for understanding engagement with healthcare services, healthcare decision-making and health behaviour (Ryan and Deci, 2011). The theory identifies three human needs: autonomy, competence, and relatedness. When one or more of these needs is thwarted, psychological and emotional functioning are likely to suffer in multiple domains (Ryan and Deci, 2011). Patient self-determination and involvement in healthcare decision making is a fundamental ethical principle. The Council of Europe have promoted the use of Advance Care Directives in EU member states to support the concept of self-determination among citizens (Council of Europe Recommendation CM/Rec, 2009). According to the World Health Organisation (WHO, 2004) Advance Care Directives are “a mechanism by which a competent individual expresses his or her wishes should circumstances arise in which he or she no longer is able to make rational and sound decisions regarding his or her medical treatment.” Self-determination theory proposes that greater autonomy support provided by healthcare professionals, may improve patient’s autonomous motivation, their perceived competence, and thus their psychological and emotional functioning. Meeting patients’ needs for self-determination may enhance engagement in identifying goals of care and, in the context of palliative care, improve the quality of care and the patient experience. However, many healthcare professionals face organisational barriers when attempting to support self-determination and subsequent Advance Care Planning. Challenges include lack of time, inadequate training, and a lack of organisational protocols around Advance Care Planning and end-of-life care (Hynes et al, 2015; Smith et al, 2014; Spence et al, 2009). Furthermore, health care professionals are not reimbursed for their role in having structured Advance Care Planning conversations and equally the documentation and professional scopes of practice are lagging in many countries. However, it is the role of healthcare professionals to create an environment of openness so that patients feel comfortable to voice their concerns regarding end-of-life issues and can be involved in Advance Care Planning. Such resource issues need to be resolved, with additional resources and education specifically for Advance Care Planning incorporated into medical education. If goal-concordat care (care provided in line with patients expressed wishes) is to be achieved, then these fundamental issues need to be addressed at government and health system level.
While self-determination is described as an ethical principle, when it is applied to making decision about end-of-life care, people find it difficult to talk about their own death. In fact, recent research by Dor-Ziderman (2019) and his team found that biologically we find it very difficult to visualise or associated ‘self’ with death. Described as a ‘primal mechanism’ the study found that the brain deflects death as something that happens others in order to reduce uncontrollable lifelong fear of impending doom, further impeding the process of Advance Care Planning. In this regard healthcare researchers and policy makers must devise ways in which optimum conditions for Advance Care Planning can take place including tackling societal norms, challenging primal mechanisms, preparing and supporting healthcare systems and healthcare professionals, who work within, to provide goal-concordant care.
According to the Nursing and Midwifery Council (UK) it is “…the responsibilities of those in charge of running health and care services to ensure difficult conversations about end-of-life care take place at the appropriate time and are clearly understood.”
Meet the Author: Dr Nicola Cornally, University College Cork
Dr Nicola Cornally is currently a Senior Lecturer at the Catherine McAuley School of Nursing and Midwifery, University College Cork. She has been a Principal Investigator and Co Principal Investigator on 5 nationally funded projects in the area of dementia palliative care, healthcare design for dignified end-of-life care and contemporary end-of-life issues including advance care planning; funded by the Heath Research Board, Irish Hospice Foundation and GlaxoSmithKline. Nicola is currently a national lead on an EU Joint Programme – Neurodegenerative Disease Research (JPND) funded mySupport study. The study aims to adapt, implement and evaluate the use of a ‘Comfort Care’ booklet designed to support care home staff to engage in decision-making with family carers about fundamental aspects of care for people living with advanced dementia. Dr Cornally is the co-director of Health Services Research for the School and lead on EU Research Funding Strategy. She was recently appointed to the Strategic Scientific Committee for the All Ireland Institute of Hospice and Palliative Care Palliative Care Research Network. Dr Cornally developed and leads on a continuous professional development blended learning module on Advance Care Planning. (Dr Nicola Cornally academic profile: LINK
If you wish to read more about Advance Care Planning, see a list of peer-reviewed published articles by the author below:
- Meehan, E., Foley, T., Kelly, M.C., Kelleher, A.B., Sweeney, C., Hally, R.M., Detering, K. and Cornally, N., 2019. Advance care planning for individuals with chronic obstructive pulmonary disease: a scoping review of the literature. Journal of Pain and Symptom Management.
- Meehan, E., Sweeney, C., Foley, T., Lehane, E., Kelleher, A.B., Hally, R.M., Shanagher, D., Korn, B., Rabbitte, M., Detering, K.M. and Cornally, N., 2019. Advance care planning in COPD: guidance development for healthcare professionals. BMJ supportive & palliative care.
- Kelleher, A.B., Sweeney, C., Foley, T., Hally, R.M., Meehan, E., Savage, E., Korn, B. and Cornally, N., 2019. An e-Delphi Study to Identify Priority Areas for Education on Advance Care Planning in COPD Management. Respiratory Care.
- O’Caoimh, R., Cornally, N., O’Sullivan, R., Hally, R., Weathers, E., Lavan, A.H., Kearns, T., Coffey, A., McGlade, C. and Molloy, D.W., 2017. Advance Care Planning within survivorship care plans for older cancer survivors: a systematic review. Maturitas, 105, pp.52-57.
- McGlade, C., Daly, E., McCarthy, J., Cornally, N., Weathers, E., O’Caoimh, R. and Molloy, D.W., 2017. Challenges in implementing an Advance Care Planning programme in long-term care. Nursing ethics, 24(1), pp.87-99.
- O’Sullivan, R., Murphy, A., O’Caoimh, R., Cornally, N., Svendrovski, A., Daly, B., Fizgerald, C., Twomey, C., McGlade, C. and Molloy, D.W., 2016. Economic (gross cost) analysis of systematically implementing a programme of Advance Care Planning in three Irish nursing homes. BMC research notes, 9(1), p.237.
- Weathers, E., O’Caoimh, R., Cornally, N., Fitzgerald, C., Kearns, T., Coffey, A., Daly, E., O’Sullivan, R., McGlade, C. and Molloy, D.W., 2016. Advance care planning: A systematic review of randomised controlled trials conducted with older adults. Maturitas, 91, pp.101-109.
- Cornally, N., McGlade, C., Weathers, E., Daly, E., Fitzgerald, C., O’Caoimh, R., Coffey, A. and Molloy, D.W., 2015. Evaluating the systematic implementation of the ‘Let Me Decide’ ADVANCE CARE PLANNING programme in long term care through focus groups: staff perspectives. BMC palliative care, 14(1), p.55.
University College Cork Blended Learning Module on Advance Care Planning: Link
Blog article reference list below:
Houben, C.H., Spruit, M.A., Groenen, M.T., Wouters, E.F. and Janssen, D.J., 2014. Efficacy of advance care planning: a systematic review and meta-analysis. Journal of the American Medical Directors Association, 15(7), pp.477-489.
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: randomised controlled trial. Bmj, 340, p.c1345.
Sudore, R.L., Lum, H.D., You, J.J., Hanson, L.C., Meier, D.E., Pantilat, S.Z., Matlock, D.D., Rietjens, J.A., Korfage, I.J., Ritchie, C.S. and Kutner, J.S., 2017. Defining advance care planning for adults: a consensus definition from a multidisciplinary Delphi panel. Journal of pain and symptom management, 53(5), pp.821-832.
Ekelund, C., Dahlin-Ivanoff, S. and Eklund, K., 2014. Self-determination and older people–A concept analysis. Scandinavian journal of occupational therapy, 21(2), pp.116-124.
Bakitas, M.A., 2005. Self-determination: analysis of the concept and implications for research in palliative care. Canadian Journal of Nursing Research Archive, 37(2).
Wesley, C.A., 1996. Social work and end-of-life decisions: Self-determination and the common good. Health & Social Work, 21(2), pp.115-121.
Ng, J.Y., Ntoumanis, N., Thøgersen-Ntoumani, C., Deci, E.L., Ryan, R.M., Duda, J.L. and Williams, G.C., 2012. Self-determination theory applied to health contexts: A meta-analysis. Perspectives on Psychological Science, 7(4), pp.325-340.
Deci, E.L. and Ryan, R.M., 2010. Self‐determination. The Corsini encyclopedia of psychology, pp.1-2.
Council of Europe Recommendation CM/Rec (2009)11 of the Committee of Ministers to member states on principles concerning continuing powers of attorney and advance directives for incapacity https://wcd.coe.int/ViewDoc.jsp?id=1563397&Site=CM. Accessed 05/03/2020
WHO 2014. Centre for health development ageing and health technical report volume 5. A glossary of terms for community health care and services for older persons. Kobe: World Health Organization Centre for Health Development (WHO Kobe Centre).
Hynes, G., Kavanagh, F., Hogan, C., Ryan, K., Rogers, L., Brosnan, J. and Coghlan, D., 2015. Understanding the challenges of palliative care in everyday clinical practice: an example from a COPD action research project. Nursing inquiry, 22(3), pp.249-260.
Smith, T.A., Kim, M., Piza, M., Davidson, P.M., Clayton, J.M., Jenkins, C.R. and Ingham, J.M., 2014. Specialist respiratory physicians’ attitudes to and practice of advance care planning in COPD. A pilot study. Respiratory medicine, 108(6), pp.935-939.
Spence, A., Hasson, F., Waldron, M., Kernohan, W.G., McLaughlin, D., Watson, B., Cochrane, B. and Marley, A.M., 2009. Professionals delivering palliative care to people with COPD: qualitative study. Palliative medicine, 23(2), pp.126-131.
Dor-Ziderman, Y., Lutz, A. and Goldstein, A., 2019. Prediction-based neural mechanisms for shielding the self from existential threat. NeuroImage, 202, p.116080.