Advance care planning with chronically ill patients: A relational autonomy approach

Abstract

Advance care planning is a process that encourages people to identify their values, to reflect upon the meanings and consequences of serious illness, to define goals and preferences for future medical treatment and care, and to discuss these goals with family and health-care providers. Advance care planning is especially important for those who are chronically ill, as patients and their families face a variety of complex healthcare decisions. Participating in advance care planning has been associated with improved outcomes; yet, despite over 25 years of public awareness campaigns, research, and interventions developed to increase participation, advance care planning completion rates for people with chronic illnesses are no different than those in the general public (approximately 25%).

Advance care planning has traditionally used an individualistic approach to autonomy, which puts forward an understanding of agents as independent, rational and self-interested persons. Because this individualistic approach has been largely unsuccessful in improving advance care planning uptake, a re-examination of the philosophical underpinnings of this practice and an exploration of alternative frameworks is warranted. In offering this exploration, we briefly outline two current perspectives on autonomy: the individualistic view and the relational view as articulated by feminist philosophers. Using a critical examination of the theoretical and empirical work on this topic, we argue that the individualistic view of autonomy does not sufficiently capture the relational and social complexities of the decision-making process of advance care planning. To offer a counterpoint, we examine the relational view of autonomy and suggest that this perspective is better aligned with the process of advance care planning. Specifically, we demonstrate that a relational model of autonomy is well suited to exploring advance care planning for four main reasons: (1) it recognizes the importance of relationships, (2) it reflects the fluctuating nature of autonomy in chronic illness, (3) it recognizes vulnerability, and (4) it is consonant with empirical work examining the advance care planning process.

Keywords

Advance care planning autonomy chronic disease decision-making end-of-life care relational autonomy

Introduction

With the ever-increasing complexity of healthcare and the availability of invasive interventions developed to prolong life, advance care planning (ACP) has been regarded within many healthcare systems as a way to promote and protect individual patient autonomy. Given the variety of definitions and recommendations about ACP practices, a recent consensus definition was developed by 109 experts from Europe, North America, and Australia which states,

Advance care planning enables individuals who have decisional capacity to identify their values, to reflect upon the meanings and consequences of serious illness scenarios, to define goals and preferences for future medical treatment and care, and to discuss these with family and health-care providers. ACP addresses individuals’ concerns across the physical, psychological, social, and spiritual domains. It encourages individuals to identify a personal representative and to record and regularly review any preferences, so that their preferences can be taken into account should they, at some point, be unable to make their own decisions. (p. e546)¹

ACP is especially important for those who are chronically ill, as patients and their families face a variety of complex healthcare decisions related to location of care, goals of care, and treatment options as their disease progresses. Participating in ACP has been associated with higher satisfaction with care, lower rates of depression and anxiety among bereaved family members, and significantly lower health care costs.² Unfortunately, despite over 25 years of public awareness campaigns, as well as significant amounts of research and interventions developed to increase ACP participation, completion rates for ACP in people with chronic illnesses such as heart failure (HF), chronic obstructive pulmonary disease, or end-stage renal disease are no different than those in the general public (approximately 25%).^3
–5 The low levels of ACP awareness and completion demonstrate that ACP continues to be severely under-utilized by both the general public and those who are chronically ill.

ACP has traditionally been modeled after informed consent, which uses an individualistic approach to autonomy in alignment with the dominant biomedical model of healthcare. This view puts forth a “dominant cultural ideal” of agents as independent, rational and self-interested persons, where, in order to be autonomous, people must freely make decisions that are uncoerced and reflect their own deliberative processes.^6,7 Since this individualistic approach has been largely unsuccessful in improving ACP uptake, a re-examination of the philosophical underpinnings of this practice and an exploration of alternative frameworks, which may better capture the realities of this complex process, is warranted. In offering this exploration, we will briefly outline two current perspectives on autonomy: The individualistic view, and the relational view as articulated by feminist philosophers such as Sherwin,⁸ McLeod and Sherwin,⁹ Sherwin and Winsby,⁶ Mackenzie,¹⁰ and Stoljar.¹¹ Using a critical examination of the theoretical and empirical work on this topic, we argue that the individualistic view of autonomy, which currently underpins ACP as an important healthcare practice, does not sufficiently capture the relational and social components of the complex decision-making process of ACP. To offer a counterpoint, we explore the relational view of autonomy and suggest that this perspective is better aligned with the process of ACP. Specifically, our goal is to demonstrate that a relational model of autonomy is well suited to exploring ACP for four main reasons: (1) it recognizes the importance of relationships, (2) it reflects the fluctuating nature of autonomy in chronic illness, (3) it recognizes vulnerability, and (4) it is consonant with empirical work examining the ACP process. Currently, there is limited empirical work that has employed a relational view autonomy as an analytical framework in the examination of ACP. Therefore, we will also provide justification for employing a relational perspective as an analytical framework in further exploration of ACP.

Individualistic view of autonomy

Beauchamp and Childress¹² are recognized as leading scholars in the principlist approach to bioethics and have developed a framework that has been widely used in healthcare over the past 40 years. Beauchamp¹³ provides a practical bioethical definition of personal autonomy as “self-rule free of controlling interferences by others.” This approach to autonomy includes both a positive and negative obligation. Positive obligations include “respectful and appropriate information exchanges and actions that foster and encourage autonomy” (p. 5).¹³ Negative obligations require that autonomous actions “not be subjected to controlling constraints by others” (p. 5).¹³ Overall, the dominant approach to autonomy in Western society has been shaped by this perspective, which is centered on the concept of individualism. The principle of respect for individual autonomy has been foundational in the structure and function of contemporary healthcare systems, specifically in terms of policy and program development, practice guidelines, and documentation requirements such as informed consent forms. Most notably, the requirement to respect autonomy translates into the healthcare provider’s requirement to secure a person’s voluntary and informed consent for all treatments and procedures and more recently has extended to promoting ACP.^13,14

Inspired by the consumer rights movement, recent decades have seen a shift away from paternalism toward increasing patient empowerment and personal investment in health care decisions. Campaigns for “patient-directed care,” and the emphasis on self-management in chronic illness care are increasingly prevalent.^15,16 Such discourses perpetuate ideas of individualism and empowerment, using an often-idealized understanding of individual patient autonomy.^15,16 These individualized practices have shifted the burden of responsibility for health onto the individual and have exaggerated patients’ true capacity for agency and self-direction, especially in periods of acute disease exacerbation.¹⁶ The idea that patients can be objective in their deliberations, arrive at independent judgments and communicate their decisions to clinicians does not accurately reflect the lived realities of people who are ill, experiencing unpleasant symptoms, dependent on the care of others and trying to navigate complex healthcare systems.⁶ This individualistic view fails to recognize that patient–provider relationships are often characterized by a deep imbalance of power and knowledge, which shapes the social context of healthcare decision-making. There is also an absence of how social location, personal identity or social roles, relationships and responsibilities contribute to people’s illness experiences and to their expression of personal autonomy more broadly.

As mentioned, ACP is currently modeled after the traditional process of informed consent, meaning clinicians provide relevant information, and then take a “stance of non-interference” as the patient makes decisions (p. 375).¹¹ For patients who are chronically ill, this means that when ACP conversations do happen (if they occur at all), they often take place during brief clinic visits. Family or close loved ones may be included but it is not required, and often patients are given educational materials (e.g. generic pamphlets), provided de-contextualized information regarding risks and benefits and advised to return with documents filled out. One of the key implications of the individualistic conceptualization of autonomy on ACP is that it aligns individual autonomy with the formal documentation of treatment preferences.¹⁷ This is illustrated in the design of the majority of ACP intervention studies, which often provide interventions that support education and documentation, and seek to improve the rates of ACP-related documentation as the primary outcome. This highlights the dominance of the individualized, documentation-centric view of autonomy not only within practice but also within research. Moreover, this approach begins to underscore the incongruence between how ACP is defined in the scientific literature and how its efficacy is actually determined and promoted in practice.

In recent years, there has been some recognition that ACP should be conceptualized as a process, as opposed to a decision that happens at one discrete time point and is determined by the presence or absence of documentation.¹⁸ Despite this shift toward a process approach, completion of ACP-related documentation (i.e. advance directive forms) is still used as a key outcome in interventional studies¹⁹ and therefore in clinical practice as well. As Johnson et al.²⁰ have noted, the notion that ACP is concerned primarily with the patient’s right to self-determination through control over treatment choices at the end of life may misrepresent the way that these decisions are made and “conflict with the deeper needs of patients, who experience ACP as a relational, emotional and social process”.

The individual autonomous approach works from the assumption that patients are competent, have sufficient experience making healthcare decisions, have the ability to independently decide what kind of treatment and care they may want in the future and document these wishes in a meaningful way.¹⁴ This process also assumes that patients are able to fully draw on the necessary autonomy competencies, or specific “agentic skills” when making challenging decisions regarding future medical care, including emotionally laden decisions such as the location of one’s death (p. 36).²¹ Meyers’²¹ competency-based view of autonomy purports that it is not sufficient to merely present an individual with an uncoerced choice, as is done with informed consent. Instead, it is necessary to ensure that the individual has had opportunities to develop agentic skills, such as self-reflection and self-trust, in order to exercise a choice responsibly.^9,21 However, these types of autonomy competencies are developed through relationships with others. Importantly, competencies can fluctuate and, for example with self-trust, one may trust oneself to various degrees and more in some areas of life as opposed to others.²² Meyers²³ argues that if autonomy requires a range of competencies then autonomy is a matter of degree and domains; therefore, an agent may be autonomous in some domains of life, but not in others, and some competencies may be well developed while others are significantly underdeveloped. In practice, this means that a patient who may be fully autonomous in every-day life decisions, may not feel equally as autonomous and confident making decisions regarding future health care.

Relational view of autonomy

Relational autonomy can be defined as a cluster of approaches to autonomy that emphasize the socially embedded nature of agents.^6,9 This approach is rooted in feminist ethics and considers the embodied social location and experience of persons while also attending to the social, political and economic conditions that influence their identity and their decision-making.^6,9 Relational views of autonomy recognize that self-determination is both defined and pursued in a social context, and that this context influences the opportunities an agent has to express or develop autonomy.⁹ Overall, this perspective seeks to identify the ways that social and political forces affect the ability to be self-directed, and rejects the idea that autonomy is an achievement of individuals.⁹

Relational views of autonomy also conceptualize moral agents as people with historical roots and socio-political context that shape their identity through relationships with others.²⁴ This perspective highlights the importance of social location, or the ascribed social identities (i.e. gender, race, sexual orientation, ethnicity, kinship status), and social roles and relationships (i.e. occupation, political party membership, familial positioning, etc.) that contribute to people’s illness experiences. Social location determines the type of opportunities available to different agents to support their development of autonomy.⁶ This conceptualization of autonomy recognizes the presence of constraining and enabling forces and provides an explanation of how these factors may influence with people’s sense of self, which may affect their ability to express autonomy.⁸ In contrast, the traditional individualistic perspective fails to acknowledge the role of social location in the expression of autonomy.

Furthermore, as a feminist perspective, relational autonomy embraces an understanding of all people as embodied, vulnerable, and in need of care. Vulnerability is inherent in all of us as a result of our embodiment: our social, affective, and political nature, and our exposure to the natural environment. As such, we can all potentially suffer things like illness, death, injury, disability, loss, grief, rights abuses, oppression, and exploitation.²⁵ Unchosen group membership, such as being a member of a marginalized racial or group, can heighten vulnerability to oppression.²⁶ At certain periods of the lifespan, we can be particularly vulnerable, namely in infancy and as we approach advanced age, not only because of physical limitations, but also because of ageism. Given that the preponderance of people living with chronic diseases and seeking health care services are older adults, recognizing the nuances of vulnerability is essential.²⁶

In the above ways, relational autonomy theory rejects what is known as methodological individualism. Methodological individualism explains personal behavior by focusing only on individual goals, intentions and beliefs, without acknowledging relevant social explanations and influences.^10,27 Importantly, however, relational autonomy does not reject normative individualism which is the perspective that the rights, freedoms and autonomy of individuals are important and impose responsibilities on others to fulfill.¹⁰ For example, relational autonomy recognizes the right of an individual patient to refuse or accept treatment even if family or others oppose the decision. Instead, relational autonomy recognizes the social context and the vulnerability of the patient making the decision, thereby rejecting methodological individualism, while upholding normative individualism.

Relational autonomy has been used successfully to examine a wide variety of issues and practices in health care, including the autonomy of nurses²⁸ the family’s role in medical decision-making,²⁹ the autonomy of nursing home residents,⁶ the decision making of cancer patients in relation to clinical trials³⁰ and the autonomy of people who use drugs.³¹ Yet, there is limited empirical study of relational approach to autonomy as an analytical framework in the examination of ACP in any population. Despite this, relational autonomy has been explored theoretically in relation to end-of-life care and family decision-making,^29,32
–34 and therefore, this literature will be used to highlight the role that using a relational view of autonomy may play in understanding the experience of ACP.

Merits of a relational view

Recognition of the importance of relationships

Relational autonomy acknowledges the role of social support in living with chronic illness and making challenging healthcare decisions. In their case analysis, Ho explicitly used relational autonomy to provide a theoretical examination of the role of family members in medical decision-making.²⁹ They suggest that given the realities of stress and vulnerability experienced during illness, some patients may want others who know them well enough to help them make appropriate decisions.²⁹ They argue that given our relational identity and intertwined interests and responsibilities, respect for patients’ agency cannot be solely based on providing the opportunity to “independently choose off a therapeutic menu” (p. 132).²⁹ This sentiment is echoed in the recent trend in ACP research to move away from using a checklist format to make treatment decisions in advance of a health crisis.¹⁸ Within the framework of the individualistic view of autonomy, the role of social support and family influence in decision-making can often be (mis)construed as coercion, manipulation, or undue influence. Conversely, the relational perspective not only acknowledges that others can be coercive, but also acknowledges that others, such as family, friends and health care providers, can enhance the autonomy of others through the provision of social support in the decision-making process.

Current definitions of ACP, such as the one provided in the introduction¹ underscore the centrality of relationships as a process that includes discussions with others as an integral part of the ACP process. In fact, it is recommended that ACP includes the potential for a personal representative, or a surrogate decision maker, to be appointed in the event that patients can no longer be capable of making decisions for themselves so their preferences and values can best be upheld.¹ Carrying out this process in a meaningful way necessitates a relational approach that values knowledge of and concern for the patient, as opposed to as an individualistic approach that is underpinned by the core value of non-interference.

The fluctuating nature of autonomy in chronic illness

A relational view of autonomy also captures the fluctuating nature of autonomy in chronic illness. First, chronic disease can affect one’s capacity for decision making.³⁵ For example, people living with neurological illnesses (such as Alzheimer’s disease), or illnesses that affect neurological processes (such as organ failure or mental illness) may struggle to engage with the process of reflecting on their experiences, identifying their own desires and communicating these desires to others.³⁵ The pain and fatigue that accompanies many chronic illnesses can also influence one’s ability to understand information and make complex decisions independently.³⁵ Second, chronic illness can disturb autonomy by forcing people to reappraise their lives and activities, especially if specific activities result in negative health outcomes.³⁶ This means that people may reconsider the importance of their health, but this may come at a cost of refraining from activities they would like to pursue.³⁶ This focus on health at the expense of other aspects of life can result in a disturbance in autonomy, as people may not be able to pursue the activities they would like or do what they would choose to do if they did not have an illness.³⁶ Finally, opportunities to make autonomous decisions may be restricted or limited as a result of chronic illnesses, as healthcare systems and healthcare providers may not encourage opportunities to engage with decision-making.¹⁵ This limited range of opportunities hinders autonomy not only by limiting one’s choices, but by limiting one’s ability to develop the skills and competencies required to make complex medical decisions.^21,35,36 Overall, these limitations and disturbances to autonomy demonstrate the fluctuating nature of autonomy, both for patients living with chronic illnesses as well as for family members who often support the decision-making process.

The experience of autonomy in chronic illness is anything but static; however, in clinical practice, autonomy is often characterized in the binary sense: either one has capacity to make autonomous decisions or one does not. This view of autonomy is quite narrow when juxtaposed with the lived experience of those with chronic illnesses. For these patients, autonomy fluctuates with changes in competencies, capacities, and circumstances; is developed or is hindered based on opportunities; and can be supported or oppressed based on relationships. Using a relational model of autonomy can highlight the similarities between the expression of autonomy in general for those living with a chronic illness and the experience of participating in ACP. By attending to relational and social factors that influence the expression of autonomy, we may reconsider the structure, function, and meaning of ACP as a healthcare practice in order to better support patients and family members.

Recognition of vulnerability

There are two types of vulnerability that highlight the importance of using a relational approach to autonomy. The first is the vulnerability that is associated with illness, which can be illustrated by a need for care and a dependency on others.²⁶ This type of vulnerability is experienced by those living with chronic illness, and often is exacerbated by the overlapping vulnerability that occurs as people age and become increasingly frail.²⁶ The second type of vulnerability is the vulnerability associated with being a healthcare provider working with patients who are chronically ill and dying. This vulnerability may contribute to the many provider-based barriers to ACP, such as clinicians’ challenges initiating and participating in ACP. Both of these vulnerabilities will be explored in further depth.

Patient vulnerability

Although ACP is something that anyone can engage with, and indeed, it is promoted as a valuable endeavor for people at any age and stage of health, those for whom ACP is of utmost importance are older adults and the chronically ill. These people are often considered vulnerable because they are ill or are placed in social situations that limit their options (i.e. admitted to hospital, living in a long-term care facility, etc.). Older adults often struggle to maintain their autonomy, and those who are ill are often subject to the routines and inclinations of healthcare providers, which can limit their ability to act autonomously.⁶

A relational view of autonomy allows for a broad account of personhood which includes vulnerability, including the vulnerability that accompanies illness. Although ACP is widely available, it becomes more important to engage with this practice when the potential for the loss of capacity becomes increasingly likely as a result of illness. Current recommendations acknowledge the relevance of timing suggesting that the content of ACP can be more targeted as people age or their health worsens.¹ This timing, however, can often heighten the potential for patients to be in vulnerable circumstances, making the recognition of vulnerability that a relational view offers highly significant. Relational autonomy also allows us to examine the ways that prevalent social discourses such as ageism and individualism actually impact decision making. As Sherwin and Winsby⁶ highlight, these discourses can shape the options available to people, and using relational autonomy encourages us to recognize how certain groups may be especially vulnerable to limited opportunities for exercising autonomy.

As an example, HF is one of the most common chronic diseases, which currently affects many people across the globe. Cognitive impairment is highly prevalent in the HF population, with studies suggesting at least 55% of HF patients experience some level of cognitive impairment.³⁷ Because of this,³⁷ people living with HF often rely on others to help them remember important information and support them in completing their daily care.³⁸ A recent review demonstrated how family, friends, and healthcare practitioners provide support to patients with HF³⁸ by playing a pivotal role in the healthcare decision-making process.^38,39

A relational view allows for a broader account of personhood that recognizes the subtleties of autonomy that include a range of capacities, which can still be expressed within and through relationships of vulnerability and dependence. While patients with HF can be physically and cognitively vulnerable and depend heavily on others to provide support and guidance for decision-making throughout their illness trajectory, they can still have the potential to participate in ACP in a meaningful way. This can be recognized when autonomy is understood as relational, which is another strength of this model. The individualistic view can be a stark approach and may view vulnerability and dependence as severely limiting the person, without fully appreciating how vulnerability can be reduced and autonomy enhanced with social support in such a way that decisional capacity can be attained.^6,14,29 This example not only points to the significance of identifying the vulnerability of patients, it also demonstrates how interrelated vulnerability and importance of relationships in chronic illness is, and how a relational view of autonomy can support vulnerable people continue their participation in ACP.

Vulnerability of healthcare professionals

Understanding the vulnerability of health professionals is also relevant to understanding why it is that ACP is currently underutilized. It has been well documented that healthcare professionals often have difficulty talking about death and dying^40
–42 which influences the extent to which they are comfortable talking about ACP.^43

–46 Their underlying vulnerability may be the result of death anxiety,^47,48 their fear of destroying the hope of families and patients^40,49 or simply their lack of skill in talking about death, dying, and ACP.^41,44
–46 Specifically, health professionals are often unfamiliar with the legal aspects of ACP and miss opportunities to respond to patient questions or concerns regarding end-of-life care.^41,44,50 In addition, practitioners may struggle to attend to patients’ changing preferences or to respond to vague requests, and have trouble finding the “right time” to initiate ACP, which may make them feel vulnerable, as they do not have expertise in this type of communication. This vulnerability may also be related to the individualistic understanding of autonomy, in which one important decision (i.e. a decision regarding resuscitation status) will happen at one discrete time point (i.e. when a Do Not Resuscitate form is signed), rather than understanding autonomy as a continuous process that occurs over time. The vulnerability of practitioners demonstrates another area where using a relational understanding of autonomy may enhance the experience of ACP from not only the patient perspective, but also the provider perspective. It is only by identifying and ameliorating this vulnerability that healthcare professionals can develop the recommended skills and openness to talk to patients and their families about diagnosis, prognosis, and ACP.¹

Consonance with empirical work examining the ACP process

Finally, a relational view is better suited to understanding empirical work that has described the emotional and relational nature of end-of-life decision-making and the experiences of decline and death, which do not generally follow a rational, individualized process. It has become increasingly clear that patients, especially those nearing death, may not prioritize autonomy as they often place more value on the perspectives of their family members.⁵¹ This is especially true for chronically ill people who are participating in ACP. In the late 1990s, Singer and colleagues^51,52 demonstrated that the perspectives of patients participating in ACP do not fully support the traditional academic assumptions of individualism used to underpin and justify ACP. The authors noted significant incongruity between the way ACP was justified theoretically (using the philosophical underpinnings of the individualistic view) with the way ACP was experienced by patients and family members. From their perspective, ACP was understood by patients to be a social process occurring within the context of relationships with close loved ones and was focused on relieving the burden placed on others.⁵¹ Building on this, it has been suggested that the individualistic view does not account for the value of personal relationships that arise in ACP.⁵³ Although the Singer et al.⁵¹ study did not explicitly suggest the use of a relational view, they suggested that the focus of ACP should be broadened to include the role of loved ones in the process and recommended that ACP interventions target the family as well as the patient.

In more recent empirical work, Robinson⁵⁴ explored the effectiveness of an ACP intervention with patients who were newly diagnosed with lung cancer and their substitute decision makers. Although this study did not explicitly employ a relational autonomy lens from the outset, the process of ACP that unfolded in this study demonstrated patients’ relational experience of ACP, which did not align with the dominant individualistic justification for ACP. They noted, like Singer et al.,⁵¹ that ACP was a deeply relational process where meaning, values, and preferences were negotiated in conversation.^51,54 The limited research that exists exploring patient perspectives on ACP demonstrates that patients generally understand ACP to take place within the context of personal relationships, and they are concerned with being a burden to others and may be looking to delegate treatment decisions to trusted people, especially near the end-of-life.^20,51,52,55 This research illustrates how the decisions people make, and their ability to act on these decisions, are both dependent on existing relationships and the context within which they are operating, which strongly reflects a relational understanding of autonomy.²⁰ Overall, this suggests that the experience of ACP may be better understood using the framework of the relational view of autonomy.

Implications for nursing practice

Using a relational view of ACP could also enhance nursing care. Because the development of ACP practices has been heavily influenced by the medical model, there has often been a narrow focus on decision-making that is exclusively focused on treatment options at end-of-life. This is incongruent with the broad ideals of nursing that seek to enhance the well-being of people and their families in a more holistic sense. One of the main barriers to nurses’ involvement in ACP is the misconception that ACP is the same as end-of-life decision making, and that this type of discussion should only be conducted by physicians.⁵⁶ A focus on treatments alone could lead to a lack of appreciation for the discussions that nurses have with patients and their families about life’s goals before death that are not directly related to treatment choices. ACP should be a continuous process of exploring values and goals that ideally begins early on in the chronic illness journey and includes patients, family members, and a variety of healthcare providers. Healthcare providers who teach patients about ACP and assist them in thinking about their care preferences and decision making do not need to be physicians. Nurses, as the healthcare professionals closest to patients, are in an optimal place to facilitate this process.^56,57 As Ke et al.⁵⁷ note, nurses play crucial roles in ACP as “assessor, initiator, information provider, communicator, advocate, broker, supporter, educator and manager.” By viewing autonomy as a broader, relational concept, nurses can support the hopes of patients and their families that are not necessarily focused exclusively on cure.

Moreover, a relational view, given its feminist roots, can encourage nurses to critically analyze, not only the goals of ACP, but the overall goals of healthcare by locating these goals within a sociopolitical context. Van Heijst⁵⁸ contrasts today’s dominant paradigm of healthcare as that of “restoring health and prolonging life” (p. 200) as opposed to what they hope will be the paradigm of the future, “professional relief of suffering in accordance with the patient’s own good” (p. 200). They argue that the latter would involve coming to terms with the transience of human existence and providing solace and care for those dying and in pain.⁵⁸ Their perspective has the potential to widen our understanding of ACP to ensure that nurses and others recognize the overall goals of care. Nurses may underestimate their power, not only with respect to specific patients, but also with respect to the kind of societal influence they may have in changing the values that direct healthcare.

Finally, using a relational lens may allow nurses to promote autonomy as a lived and negotiated experience, as outlined by Greaney and O’Mathuna’s⁵⁹ recent empirical work. This model rejects the idea that autonomy is exerted through “discrete moments and choice,” and instead puts forth an understanding of autonomy as an interdependent process that “involves mutual respect and understanding between patients and professionals.”⁵⁹ Building on this, nurses can operationalize a relational and interdependent conception of autonomy by advocating for policies and legislation that broaden our understanding of autonomy beyond the concept of “consent” and promote models of supported and shared decision-making.⁵⁹ The United Nations Convention on the Rights of People with Disabilities (2006) obliges member states to provide citizens with measures to assist them in their decision-making.⁶⁰ This convention has led to change in health and social care practices in many countries; an example of this is the Assisted-Decision Making (Capacity) Act that was passed in Ireland, which outlines the implementation of supportive measures to assist individuals to make their own decisions.⁶⁰ Other examples of this type of work can also be seen taking place in Canada and Australia.⁶⁰ By combining new legislation that supports assisted decision-making with a relational understanding of autonomy as a negotiated and interdependent process, nurses should continue to be at the forefront of the assisted decision-making movement, as they are instrumental in promoting and upholding the autonomy of their patients in a variety of contexts.

Conclusion

In conclusion, we suggest that there are good arguments and evidence for using a relational view of autonomy in ACP as it recognizes the importance of relationships and the fluctuating nature of autonomy in chronic illness, it recognizes vulnerability, and it is consonant with empirical work examining the ACP process. Importantly, although relational autonomy has been explored as a potential conceptual framework for ACP practice in previous theoretical work in bioethics, there has been limited empirical work, as of yet, that explicitly employs relational autonomy to frame the research approach or study design. In our analysis, we argue that relational autonomy is a more suitable framework for the provision of ACP and further empirical work is required to explore how relational autonomy theory may allow us to better understand and improve the experience of ACP for patients with chronic illnesses.

Footnotes

Conflict of interest

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was funded by the Ted Rogers Centre for Heart Research PhD Education Award and the University of Toronto.

ORCID iD

Tieghan Killackey

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