Advance Care Planning as a Medium for Providing Care Aligned to Peoples Wishes

Author: Dr Nicola Cornally, University College Cork

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.”