Planning for an (un)certain future: Choice within English end-of-life care

Introduction

The landscape of healthcare is changing with an increased emphasis on individual choice. End-of-life care, as practised in places like the UK, USA and Australia, is a case in point as patient choice – within a wider set of neoliberal policies – is a key conceptual framework for motivating service development and provision. This article addresses what choice in this context is and how people are experiencing ‘choice’. In turn, it describes the ways in which people engage with the idea of making decisions about end-of-life care. By focusing on qualitative ethnographic research from England, contrasting healthcare policy rhetoric with two patient case studies, this article argues that choice discourse is shaping the way death is to be managed through choice. There is now a responsibility to articulate and achieve patient preferences at a time when other factors – such as the timing and messiness of death – remain outside of perceived normal parameters of control.

End-of-life care in England aims to provide high quality care in the last year of life, primarily supplied through the National Health Service (NHS) and wider welfare state regimes. The NHS was formed in the late 1940s to provide a cradle-to-grave medical service that was free at the point of need (Rivett, 1998). The principle of state-supported healthcare has remained at its core although there has been an increased amount of marketization and decentralization within the NHS since the 1980s. Reshaping welfare-based regimes rather than abolishing them is theorized as a form of neoliberal governmentality (Hartman, 2005), where a person’s claim and access to care form a new kind of biological citizenship (Ong and Collier, 2005). In the context of end-of-life care, this is evident in the emphasis on patient choice.

A fundamental tenet of neoliberal policies is the ability and necessity for an individual to make choices (McGregor, 2001), assuming that they will favour themselves and promote their own lives. Since the 1990s, due to ‘tremendous popular and political appeal’ (Appleby et al., 2003: vii) there has been an increased emphasis on individualistic patient autonomy within the NHS. Patients and healthcare professionals are to work collaboratively towards deciding a patient’s course of treatment, and service provision is to iteratively change in response to population and patient preferences and needs (Appleby et al., 2003). In the policy discourse, having choice is equated with improved patient experience (DH, 2003). This shift reflects the ‘subtle and cumulative manner’ in which consumerism and neoliberal values have become part of healthcare policy (Greener, 2009: 309). In this new model, patients are ‘users’ of the NHS rather than passive recipients of care, empowered through their choice (Veitch, 2010), and in turn healthcare professionals and policy-makers shape the ways in which services are accessed and implemented.

There have been many critiques of neoliberal healthcare politics (e.g. Scott-Samuel et al., 2013) and the notion of patient choice (Bryant et al., 2007), yet the way neoliberal values are adopted varies internationally; understanding local articulations of these values helps describe the limits of neoliberalism as a totalizing force (Kingfisher and Maskovsky, 2008). Rather than presenting a critique based on the principles of these policies, this article offers ethnographic insight into how they are being constructed, adopted and enacted – or even resisted – in specific ways. In particular, this research is based on how ‘choice’ is mobilized in English end-of-life care policy, and how people who may be the subject of end-of-life care policy perceive, discuss and enact ‘choice’. This article argues that within policy discourses, choice is an ideal and is treated as a goal. When it comes to elucidating choice and talking to patients about their preferences, ‘choice’ reflects an imperfect process that does not adequately capture their experiences as they come to the end of their lives. Ultimately, the experiences of considering choices at the end of life do not neatly fit into the idealistic ambitions of end-of-life care policy.

Background and methods

End-of-life care is a relatively new domain of healthcare practice, growing from the hospice movement and specialist palliative care (Seymour, 2012). The Department of Health for England and Wales released the first national end-of-life care policy in 2008 − the End of Life Care Strategy (DH, 2008) – and several countries have since followed suit or are in the process of devising policies (e.g. Department of Health [Australia], 2010; Macaden, 2011). The strategy calls on healthcare professionals to identify patients that may be in their last year of life and to plan with these patients their future care and death, a process known as advance care planning (ACP). It is hoped that through care planning hospital admissions at the end of life can be avoided, thereby reducing costs to the NHS (Gott et al., 2013). Under this framework, death is not something that ‘just happens’ to people, but something that can be anticipated and planned for.

Patients are expected to want to organize circumstances around their death, although assisted dying is illegal, building on a small practice of writing living wills or advance directives, appointing power of attorneys, and funeral planning. This kind of anticipatory decision-making can be considered a neoliberal cultural practice imported from North America (Thomas et al., 2008) and it is understood as supporting a person’s dignity towards the end of life by affording them control over their death (Tang and Chen, 2012). Importantly, the logic is that incorporating patient choice through advance care planning enables patients to have a ‘good death’.

This article is based on a subsection of data from a larger ethnographic study of English end-of-life care conducted between 2010 and 2012. The purpose of the study was to explore how the concepts embodied in the policy discourse, especially ‘choice’, are translated into healthcare practice and how people who may be the subject of end-of-life care policy perceive, discuss and enact ‘choice’ and whether this reflects their experiences of the everyday as they live with long-term and/or terminal illness (Borgstrom, 2014). The study had approval from the local National Research Ethics Service committee and all participants consented to the interviews and observations. It involved analysis of policy documents related to end-of-life care, as well as over 50 hours of observations of policy-related events, 250 hours of participant-observation in clinical settings and support groups, and over 100 semi-structured interviews with policy-makers, healthcare professionals, patients and their families/carers. As part of a longitudinal study, 10 individuals/couples recruited through support groups or hospice centres were interviewed multiple times over 14 months. Fieldnotes were written from observations and interviews; analysis focused on how people discussed and performed choice and advance care planning, how death was defined and managed, and how people made meaning of their lives.

This article deliberately parallels policy rhetoric of choice with two patients’ experiences of being confronted to consider their end-of-life care preferences. This is done to emphasize the various ways in which choice is perceived and enacted, or even resisted, thereby demonstrating the malleability and agency of the concept as a moral construct. The first section – choice as a goal and solution – describes how language is used to present choice in end-of-life care as a way to reform the care of the dying through managed palliative care. My argument draws on statements made in policy documents, such as the End of Life Care Strategy (DH, 2008), and the related scientific and academic literature that is used to support policy ambitions. In these documents, the concept of choice is represented in the allied language of preference, decision-making and advance care planning. These studies were often cited in events where policy-makers promoted the Strategy to local healthcare commissioners and professionals. This section also highlights the organizational changes – such as how deaths are audited – that support the discourse of choice in practice.

The second section focuses on the experiences and accounts of two men – Chris and Oscar (pseudonyms) – with whom I met regularly during the course of the study and could follow as their lives unfolded. Fieldnotes from our visits and interview transcripts were analysed for how they described and made sense of planning for the future, which were then categorized under the themes described in the second section. Both had deteriorating health conditions and were considered to be ‘end-of-life care patients’, insofar as healthcare professionals suggested that their prognosis could be 12 months or less (although both lived on for years after the start of the study); in this sense, they are prime candidates for advance care planning. However, neither of them actively sought to make these plans and both found it a difficult process, as described later. While I met with over 40 ‘patients’ as part of the larger ethnography, both Chris and Oscar openly reflected and were articulate on the issues of choice. In this sense they were unusual in their willingness and ability to describe why they did not ‘make plans’ but their reticence was shared with many more people in this study and other research (Boyd and Murray, 2014). While these accounts are not broadly representative, as both Chris and Oscar openly discussed dying, both men were able to give voice to the complexity of planning ahead in the context of end-of-life care, which helps problematize the policy rhetoric.

Chris was in his mid-fifties, recently and reluctantly retired due to his diagnosis of aggressive cancer, for which he received intensive treatment despite an unknown, and potentially short-term, prognosis. No longer employed, Chris and his family defaulted on their mortgage and had to be moved into social housing, which in itself presented an ongoing battle. I initially met him through the hospice day-therapy service where I did participant-observation, and was able to discuss his care with the staff there. Chris and I met for informal interviews 15 times over the course of a year, with him often choosing to frequent places that were involved in his care, and we regularly exchanged emails about his creative writing concerning his condition.

Oscar was in his mid-sixties and lived with his wife Pamela who was an ex-nurse and his main carer. Like Chris, Oscar retired early due to deteriorating health; in his case, caused by a degenerative neurological condition which required numerous hospital visits for tests in the ‘early years’ and a slow loss of mobility and motor-control. I visited Oscar and Pamela in their home approximately once a month for 14 months for long semi-structured interviews – or ‘discussions’ as Oscar called them. During this time, Oscar was very reflective and would steer the conversation to topics that he was passionate about. He openly admitted that he spent time thinking about what we should discuss in between visits, and our conversations also covered both his and Pamela’s fluctuating health statuses, including Oscar’s more recent diagnosis of cancer. During this time, I was also able to observe how Oscar interacted with nurses at the same hospice day-therapy centre that Chris attended, and we used his visits as a prompt for some of our discussions.

The first section below discusses how choice is framed as a goal and solution within end-of-life care policy. In particular, it outlines the emphasis within policy to promote more ‘home deaths’ through patient choice. In contrast, the snippets from my discussions and observations with Chris and Oscar demonstrate how ‘choice’ was an imperfect prospect for them, even though they were theoretically (from the policy perspective) in a position to be making these choices. This section outlines how choice was discussed and the contextual nature of the decision-making that was involved. Overall, the comparison between policy rhetoric and people’s lived experiences is used to comment on the role of choice in (English) end-of-life care.

Choice as a goal and solution

There is a solution. Over half a million people die each year, yet 70% have not discussed their own end of life wishes with their partner, family, friends or health or social care professionals. (Excerpt from Dying – Doing It Better booklet from the National Council for Palliative Care and Dying Matters, 2011: 4)

As illustrated in the quote above, within English end-of-life care policy, ‘choice’ is constructed as a solution to ‘the problem’ of death. This problem, as it is presented, is one of increasing rate and need that will outstrip the hospital and hospice resources (National Council for Palliative Care and Dying Matters, 2011). By 2030 it is expected that 530,000 will die each year (Richards, 2008), many of them having long-term and multiple illnesses towards the end of life, including an increase in dementia, which can impact decision-making in the present (Fellows, 1998). The increasing rate of deaths within the country due to demographic changes is projected to put a strain on the institutional provision of healthcare, particularly within hospitals which is where most people have died within the UK over the last few decades (Gao et al., 2013). Moreover, death is commonly portrayed and experienced as a failure within medicine (Bishop, 2011) and doctors may be reluctant to discuss terminal prognoses with patients and their families (Barclay et al., 2011). Within the last decade, there have been several public discussions within the popular media about how dying people are cared for, with a perception that the NHS fails to provide people with dignity and respect as they die (Alghrani et al., 2011). Not only then is death itself seen as a failure within medical practice, but also medical professionals are portrayed as failing to adequately care for the dying.

The primary exception to this perception is specialist palliative care, for which provision is inequitable across localities and disease groups (DH, 2008). Practitioners of palliative care pride themselves on their philosophy of holistic care, whereby the social, psychological, spiritual and physical elements of the patient are taken into consideration and patients are frequently involved in the treatment and care decisions that affect them (Latimer, 1991). To improve the quality of care provided at the end of life, the national End-of-Life Care Strategy (DH, 2008) sought to roll out tools and methods commonly used within palliative care to all patients who were identified as being in the last year of their life. Most of these involve the process of Advance Care Planning (ACP), whereby people state preferences for the level and kind of treatment they would like to receive in the future should their health worsen. These ‘choices’ are to be shared between healthcare professionals to ensure care is provided to meet patient preferences as much as possible. From this policy perspective, ascertaining and acting upon patient preferences therefore represented a solution to providing dignity and care as more people die.

Choice as an imperfect prospect

How can we plan for the future if we don’t know what tomorrow will be like? We live each day as it comes … (Oscar commenting on his and Pamela’s lack of documented care plans)

Through discussing ‘choice’ and how Oscar and Chris made plans (or not, as was often the case), it was evident that these were negotiated processes that often took place in an imperfect system. In principle, they, and many more people that I interviewed as part of the larger ethnography, agreed with the idea of expressing preferences about end-of-life care and that, as much as possible, these wishes should be supported. However, these same people did not engage with advance care planning, either in the formal process or the documentation, even if healthcare professionals routinely asked them. Instead, Oscar and Chris described the ways in which they ‘muddled through’ the healthcare system, especially in not knowing who could give them what information when. This sense of uncertainty affected their ability to plan for their (certain) deaths. As outlined further below, the main reasons why enacting choice as a discussion of patient preferences was more complicated than portrayed within the policy rhetoric is that: dying was not always easy to discuss; expressing decisions was rarely viewed as a discrete event and preferences could change over time; and, Oscar and Chris, as well as others in the wider study, did not feel they ultimately had autonomy or agency. Consequently, thinking about choice as embedded in practices, rather than just a rhetorical device or political value, demonstrates the complex, and incomplete, ways in which neoliberal policies are being articulated.

Discussion

English end-of-life care policy, as described in the first section, formulates choice as a goal and objective for healthcare practice and patients to realize. Specific choices can be known through discussions with patients about their personal preferences, for example, where they would like to be cared for and die. These preferences – or choices – are to be documented and shared among healthcare professionals. Often, place of death is the main ‘choice’ addressed in policy discourse and tools used to promote patient choice at the end of life, although this is a rather limited view of what choice can be.

Moreover, the experiences of making these ‘choices’ often left people feeling that individual choice was not something they had. Instead, what became known as ‘patient preference’ or ‘patient choice’ were often ideas forged through processes of negotiation and subject to external concerns. As evident in the previous section, what became known as ‘choice’ was not the individual choice that is the goal of policy, but an expression of the entangled relationships patients are part of as they near the end of their life. Having to express choices, while envisioned as empowering, often highlighted for people the complicated and conflicting nature of dying and providing end-of-life care. This contested nature of choice makes it a problematic goal, as the ultimate control over death, which is the fundamental element of choice throughout these examples, remains elusive.

These versions of choice correspond with previous commentaries about the role of choice in neoliberal contexts. Neoliberalism is linked to greater individualism (Coburn, 2003) and choice has become a requirement (Giddens, 1991). This research supports Walter’s claim that dying in the contemporary neoliberal period is informed by the policy assumption that individuals can be aware of their deaths and liberated through choice (Walter, 1994); indeed, choice has a moral quality of personhood in policy discourse. Yet, research has shown that there is variance in people’s desire to be part of end-of-life care decision-making (e.g. Heyland et al., 2003). The empowering role of choice, when choice is a requirement rather than an expression of free-will as the term initially implies, is questionable (Barnes and Prior, 1995; Drought and Koenig, 2002). While this article has deliberately set the policy rhetoric against how articulating end-of-life care choices is experienced, both of these can be interpreted as ways in which the neoliberal value of individual autonomy is being understood in the context of English end-of-life care.

The way choice is being utilized within policy is reconfiguring services around market principles. Globally, care is increasingly commodified within market logics of choice (Green and Lawson, 2011). In turn this is changing the nature of the relationship between healthcare professionals and patients (Mol, 2008); patients are expected to take more responsibility for their health and now even their deaths, choosing from a variety of services and treatment options. A focus on personal choice risks reducing the personal, and dignified, nature of care by eroding the intimacy of the care relationship (Owens, 2015), which is supposed to be at the heart of end-of-life care policy. Moreover, the routinized ways in which advance care planning is done risks undermining its core values by focusing on documentation rather than the person, as has happened in hospice care previously (James and Field, 1992). The assumption then that choice – and activities that involve patient choice – at the end of life equates to high quality care is problematic in that it does not address the relational, and often subtly negotiated, nature of care.

The concept of individual choice, often based on the notion of free-will and rationality, has been heavily critiqued (e.g. Salecl, 2010). What are denoted as someone’s preferences are influenced by the context of decision-making (Ditto et al., 2006), and studies on advance care planning have shown how setting, relative health status and relationships affect the preference people express (Seymour et al., 2010b). Although it is suggested that advance care planning improves the quality of end-of-life care (Brinkman-Stoppelenburg et al., 2014), it is not clear if it improves the experience of dying; studies on birth planning have shown that planning ahead does not necessarily meaningfully change the experience (Peart, 2004). The practice of advance care planning should not be so readily conflated with the idea of individual autonomy, assuming that they both have the same material and meaningful consequences for people’s experiences of dying and death.

Conclusion

In the context of English end-of-life care, choice is imbued with positive moral values; this is similar to how choice operates in many neoliberal policies. It is rhetorically understood as both a standard goal that can be achieved and an attribute of the person. It is deployed as a way to manage the problem of dying, while not altering the timing or means of death. Yet, the ways in which choices are made known and acted upon reflect the complex nature of care and situations that people are part of. Even if people can assert preferences about their end-of-life care when death is ultimately certain, ‘choice’ cannot control the uncertain ways in which dying processes unfold.