Editorial: Advancing the advance care planning process

Abstract

How many of us have heard an older person say, ‘I never thought I’d end up like this?’ Or have you listened to older persons with chronic diseases lament they are tired of living with unrelieved pain, under or over-treated physical problems, or overlooked psychological or social problems? Maybe you have heard both older persons and their loved ones voice feeling overwhelmed, confused or disempowered about treatments and their options? Perhaps in these circumstances, you have thought ‘I would not want to live like that?’ The purpose of this editorial is to revisit advance care planning (ACP) and inspect our own actions and beliefs about ACP in order to identify as individuals and care providers how we can advance ACP in the lives of older persons. Advance care planning is often narrowly defined in terms of end of life care or advance directives. The terms are not synonymous and while often used interchangeably, the slippery slope of terminology has led to many misconceptions. Though ACP was chosen purposefully in the early 1990s to imply a process (Curd, 1999) many older persons and their loved ones, as well as many health practitioners, continue to associate ACP solely with completing legal documents. Advanced directives are most often completed when death is imminent, a crisis occurs in a chronic illness trajectory or on admission to a hospice programme. There is, however, much variation globally. The USA is commonly cited for its early legislation. Since 1991, all adults on admission to hospitals are asked if they have made their wishes known about advance directives to be in compliance with the Patient Self-Determination Act (U.S.P.L. 101–508). In other countries across the world, laws vary. Vezzoni (2005) surveyed 70 countries regarding advance directives legislation and grouped the findings into three country categories: those where there was unambiguous support, those that had informed consent but the laws on advance directives were more ambiguous, and the last contained one country that did not recognise informed consent. Legal documents in the form of advance directives are considered the cornerstone of ACP and informed consent is the basis for ACP, but ACP as a process is much more dynamic. ACP includes education about prognosis and common clinical and functional disease trajectories and associated treatment plans. Patients and their loved ones help shape plans of care based on their values and beliefs as their health changes due to the dynamic nature of chronic diseases (Davison, 2008). However, legal documents may be a logical starting point for starting the process of ACP (Sudore et al., 2008). But laws are changing as noted by Jeong et al. (2010) and ACP is evolving to reflect its fluid nature. In the USA, for example, Oregon developed a protocol for persons with serious chronic diseases called the Physician Orders for Life-Sustaining Treatment (POLST). The protocol involves a process in which a modifiable portable ACP document is shared across settings and physicians. Sabatino (2010) writes: ‘POLST is not an advance directive; it is an ACP tool that reflects the patient’s here-and-now goals for medical decisions that, considering the patient’s current condition, could confront him or her in the immediate future’ (p. 229). For a complete look at the use of the protocol across States visit the POLST website (http://www.ohsu.edu/polst/). Advance care planning is perhaps more obvious at the life junctures of older persons noted above, but more recently, attention has been given to ACP in serious chronic conditions like congestive heart failure, dementia (e.g. Alzheimer’s), and chronic obstructive pulmonary disease and with healthy older adults over the age of 85. Other work has been progressing to make ACP normative, that is to make it routine and part of expected health care. An example of this is seen in the ‘Respecting Choices’ ACP programme that was developed in La Crosse, Wisconsin, over 15 years ago so that patients’ choices are assessed and reassessed regularly and those choices are honoured (Hammes et al., 2010). Further work is showing the positive impact of using ACP in settings besides in-patient institutions like home care, primary care and outpatient clinics. Kass-Bartelmes and Hughes (2003) in a written report for The Agency for Healthcare Research and Quality cite numerous studies that show individuals are not involved effectively in ACP and that healthcare professionals themselves are often misinformed about ACP. In several studies dying patients (as well as their families) cited communication as a major problem indicating there were misunderstandings about treatment plans, the disease itself and its trajectory, and the decisions that were needed about care. More recent studies on advance directives show an increase in use (Silveira et al., 2010). However, the issue remains that advance directives are not the whole answer and we must reach older persons sooner in their disease processes. As the number of frail elders continues to increase around the world, fostering ACP is crucial given the emotional and financial costs that come with redundant, avoidable, unwanted or unnecessary, or disputed medical treatments associated with the unfolding of serious chronic illnesses in older persons. As authors we believe that the word process should routinely be added to the current term, ACP, to remind and inform older persons and professionals of the dynamic nature of the advance care planning process (ACPP). To reach more people and ensure consistent and ongoing access to the ACPP each of us has a role in (i) working with older persons sooner in their disease processes and (ii) being politically active within our governments and health systems to assure necessary resources are available (e.g. education, time and compensation to carry out ongoing assessments and dialogues) for ACPP. Those of us in research and education have additional roles to play, e.g. integrating ACPP education across curriculums or that research programmes are inclusive of the processes and outcomes associated with ACPP. Finally and perhaps foremost, we need to examine our beliefs and experiences. Even though many of us have heard remarks and responded similarly to those stated in the introduction, there is limited research on how health professionals’ personal experiences and attitudes towards ACPP affect their decisions to encourage ACPP. Black (2007) found that previous personal or professional experience in dealing with death may influence the process in which healthcare providers provide ACP for patients. Recently, a team of investigators we have been working with found that community-based Registered Nurses’ and social workers’ judgments about the need for ACP in older persons increased significantly when providers reported personal experience with ACP, but not with their own advance directives. We ask you to consider your own experiences and the role they may play in ACCP. The International Journal of Older People Nursing has published to date over 10 articles that have in their title ACP, end of life or palliative care. From the time this Journal was published independently, person-centred care has served as a strong underlying framework for many articles. A key outcome of person-centred care is empowerment, but how do we help patients become empowered? One critical area of patient empowerment that we must continue to promote is the ACPP.