The Unintended Harms of the Covid-19 Visitor Restrictions in End-of-Life Care

Ratcliffe, Matthew. 2015. Experiences of Depression: A Study in Phenomenology. Oxford: Oxford University Press.

———. 2010. “The Phenomenology of Mood and the Meaning of Life.” In The Oxford Handbook of Philosophy of Emotion. Edited by Peter Goldie, 349-371. Oxford: Oxford University Press.

Sathyanarayana Rao, T. S., M.R. Asha, B.N. Ramesh, and K.S. Jagannantha Rao. 2008. “Understanding Nutrition, Depression and Mental Illnesses.” Indian Journal of Psychiatry 50, no. 2: 77-82.

Ströhle, Andreas. 2009. “Physical Activity, Exercise, Depression and Anxiety Disorders.” Journal of Neural Transmission, 116: 777–784.

The Unintended Harms of the Covid-19 Visitors Restrictions in End-of-Life Care

Camille Irvine, Masters Student (University of Guelph)

The COVID-19 visitor restrictions, as the public health response to the pandemic, have revealed that a clinical bioethical framework (with its philosophical roots stemming from the individualistic biomedical model) does not provide proper care for dying persons, family members, and care staff. The COVID-19 visitor restrictions are necessary precautions in preventing the COVID-19 virus from rapidly spreading among spaces of vulnerable persons (characteristic of end of life health care spaces). I want to be overt in expressing that this paper is not meant to dismiss nor question the crucial role that empirical work in disease control entails. Instead, this paper will explore how the visitor restrictions, in themselves, prohibit end of life care for family members, patients and why they cause significant moral distress for caretakers. To show that this is the case, I distinguish between individualistic care approaches and relational care approaches, noting the underlying principles that govern each approach. Where the biomedical model's philosophical nature is individualistic, the philosophical roots of end-oflife care models are relational. By looking at the core values, principles, and philosophical underpinnings of end-of-life care in Canada, I aim to show how the COVID-19 visitor restrictions prohibit the ability to provide quality care for the dying and why these restrictions so adversely affect these spaces of care. I will reject the philosophical principles that underpin individualistic care models in the context of long-term care and palliative care units, arguing that biomedical clinical space is that which promises these individualistic principles in practice. A contradictory care space is a practice of care that faces barriers to being in such a space. In conjunction with a clinical bioethics’ pandemic response, biomedical clinical space is incompatible with the practices of medicine founded on relational values and principles (namely, end of life care). As seen through the lens of feminist bioethics, I will be arguing on behalf of relational theories of care and introducing a relational understanding of autonomy in the context of end-oflife care (Sherwin and Stockdale 2017). I aim to invoke recognition over the inherently contradictory space created when a relational model of care falls under the ethical jurisdiction of

an individualistic ethical framework. Ultimately, this paper strives to advocate that the appropriate ethical framework for approaching end of life care ethics is a feminist relational approach.

§1 – Individualistic vs Relational Approaches

Before proceeding to the bulk of this paper's argument, a distinction between individualistic approaches to care and relational approaches to care is necessary. To achieve this, one must obtain a rudimentary understanding of the relationships between ethical theories and how they translate into practical application.

1.1 From Vision to Practice It is vital to recognize the ethical necessities of palliative and end of life care. To do this, we need to remind ourselves of how these approaches operationalize into practice. From an approach comes a methodology, which determines how to ground principles. Once an approach and methodology have been established, they begin to encapsulate an ethical theory. An ethical theory creates the parameters and justification guidelines for what is deemed right or wrong in action. A theory then establishes the principles that will eventually guide and underpin an ethical framework. Ethical frameworks use the principles established by the theory to guide systemic analysis of ethical issues in order to support decision-making (Government of Canada Public Health 2021). A particular ethical framework is constructed by these founded principles, which are then contextualized into particular practical space in the form of policy. Policy is heavily influenced by the ethical framework that holds jurisdiction. Policy acts as a referee to ensure that the values from the ethical framework operationalize into practical application. The principles of that theory justify the practical applications of an ethical framework. Consequentially, the practical application of an ethical framework is what these values ought to look like within a particular social space. This notion of space is both literal and abstract. It is a literal term in the sense that it must occupy a physical area for a theory to come to practice; it is abstract in the sense that by virtue of occupying a physical space, it is under ethical jurisdiction of that given space. To expand on this concept, note that the relationship between moving from an ethical theory to practical application

assumes that the practice itself is aligned with the fundamental principles of that theory. The practical application of a particular theory is responsible for the creation of these physical spaces. At the same time, an ethical theory is closely connected to the conceptual understanding of space, where what is constituted as a ‘good’ or ‘bad’ action is governed by the underlying philosophical principles of that theory. An example of these two notions of space and their place in this hierarchical ethical arrangement can be seen in the process of establishing practical models of care. Models of care are the practically defined way in which health services are delivered in a clinical setting. Models of care are characterized by an ethical theory and approach, which then creates the principles to ground and contextualizes an ethical framework. Therefore, what constitutes care in a particular space, or quality of care for that matter, depends not just on the practical clinical application but also that the core principles and values of a particular faculty of health care align with the ethical jurisdiction it resides. Thus, how we initially determine what approach to take has lingering ethical influences that translate down to the practical application from a top-down relation. Likewise, the differing values of care within all faculties of medicine can also influence the ethical requirements via a bottom-up approach. The branches of ethics which concern the next portion of this paper are bioethics and clinical bioethics. The succeeding parts of this paper will address end of life care ethics and pandemic ethics. To begin, bioethics is a subgroup of ethics that, loosely speaking, studies and charts ethical parameters in the biological fields. Clinical bioethics is a practical branch that implements structured approaches to ethical issues or uncertainties that emerge in a clinical healthcare space. Clinical bioethics quarries include but are not limited to policy formation, ethical consultation to healthcare practitioners, patients, and family members.

1.2 Individualistic Approaches to Care Individualistic approaches to care are premised on an ideology that aims to comprehend and justify moral principles on an individual level, namely, individualism (Fee and Krieger 1993, 1481). Individualism as an approach adopts the idea of persons as aims based upon the liberal conception of peoples as free and autonomous decision-makers. Individual approaches to care adopt this concept of the person as an individual who is able to live their life freely in accordance with her self-chosen plan and ideally independent from controlling influences (Dove et al. 2017,

150). Individualistic approaches to care are accompanied by the fundamental principle of individualistic autonomy, which purports that persons are self-contained and self-determining creatures (Mill 1878). This emphasis on independence translates into understandings of autonomy in bioethics, where negative freedom plays a central role in its conceptualization (Dove et al. 2017, 152). Negative freedom is freedom from interference by others, where a negative understanding of autonomy serves as a device to protect individuals from the intrusions of others. Negative freedom is a way to operationalize respect for individual autonomy. This approach to ethics takes the individual as the starting point for ethical analysis, building a theory of ethics latent with individual-centred principles (Kenny, Sherwin, and Baylis 2010, 9). In this sense, an individualistic approach does not prioritize acknowledging the influence that the nexus of intentions and beliefs of others may have on an individual. Instead, it relies on the concept of persons as independent from any social, societal, or environmental influences (Wynne, Petrova, and Coghlan 2020, 516). The individualistic idea of the person serves as a philosophical underpinning of individual approaches to care, manifesting a default ethical framework that prioritizes the good of the individuals as confined from the interferences of others (see section 1.4 for more). However, individual autonomy in practice has shown appealing results: Respect for individual autonomy has served to protect patients against paternalism; it puts patient’s values, interests, and beliefs at the centre of healthcare decisions which empowers individuals (GómezVirseda, de Maeseneer, and Gastmans 2019, 6). Furthermore, the practical application of individualistic autonomy in real-life situations has contributed to the development of patient’s rights, including privacy, confidentiality, self-determination, and the primacy of truth-telling in end of life scenarios (Gómez-Virseda, de Maeseneer, and Gastmans 2019, 6).

1.3 Relational Approaches To Care A relational approach is one that approaches ethical questions explicitly attentive to the relational nature of selves, as opposed to a person as isolated from others’ influence (Sherwin and Stockdale 2017, 7-29). A relational approach grounds its values in principles which take into account persons as essentially relation creatures. At its core, relational approaches appreciate the subjective and uniquely qualitative aspects of experience; feelings, emotions, beliefs, a totality of what is to be considered the “what it’s likeness” or the lived experience. These subjective aspects

of an individual’s lived experience are the existential extensions that fundamentally connect people, making persons essentially relational beings intrinsically tied to others. Feminist bioethics favours this methodological approach to respecting the qualitative experiences that capture important empirical information about the situated encounter with healthcare (Donchin and Jackie Scully 2015, Feminist Bioethics, para. 2-3). This feminist relational approach to ethics creates a notion of relational autonomy, whereby it “embraces (rather than ignores) the fact that persons are inherently socially, politically, and economically situated being” (Kenny, Sherwin, and Baylis 2010, 10). Relational autonomy will be critically addressed later in this paper (see section 1.6).

1.4 The Dominant Individualistic Ethical Framework: The Biomedical Model Individualistic models of care dominate the health care field (Kenny, Sherwin, and Baylis 2010, 9-11). The majority of health care is ethically powered by the biomedical model, by which I mean the ethical framework that dominates health care with its theory based on the ideology of individualism and a focus on the biological and individual level-factors of care (Fee and Krieger 1993, 1481). This biomedical approach assumes disease to be fully accounted for by deviations from the norm of measurable biological variables (Fee and Krieger 1993, 1481). The biomedical model extends into clinical bioethics, public health ethics, and, most recently, pandemic ethics (Kenny, Sherwin, and Baylis 2010, 9-11). Proponents of the biomedical model adopt the notion of individualistic autonomy discussed previously (see section 1.2), and accordingly so, relays an individualistic model of care in practice. As previously mentioned, individualistic models of care are philosophically supported by the assumption of persons as independent and self-determinate beings without the connection to or influence of others. These core principles then structure an ethical framework that contextualizes into different branches of health care in the form of policy. This policy acts as the ethical guideline that operationalizes the biomedical model into practice. The space in which these practices occur is what I will refer to as biomedical space, within which the biomedical model holds ethical dominion over a given care space. I will take biomedical space to be implied in both a literal and abstract sense: 1) Literal as referring to the physical area where the practicing of individualistic care models occurs, such as emergency rooms, family doctor’s office, or oncologist office; and 2) Abstract as referring to a conceptual understanding of space, which speaks to the core principles and values of a particular faculty of

health care and whether or not they are compatible with the ethical jurisdiction in which space resides.

Biomedical spaces are necessarily individualistic since they stipulate that a just outcome is obtained if an individual's needs are met independently of social and societal influence. The biomedical model is reductionist in the sense that they put primacy on explanations of disease etiology which fall within the purview of narrowly construed medical intervention and disease mechanisms (Fee and Krieger 1993, 1481). In practice, these spaces operationalize medical procedures orientate around the individual’s biological state, meaning that the treatment outcome is isolated to biomedical interventions operating on biological mechanisms. Under the ethical jurisdiction of an individualistic care space, persons' beliefs and subjective experiences are seen as misinformation and are deemed irrelevant to the truth since scientific knowledge under this conception is held outside of the bounds of social context (Fee and Krieger 1993, 1477-1486). This solely isolated conception of a person is characteristic of biomedical care practices.

Biomedical spaces represent most practices taking place in health care institutions, from the emergency room to a family physician’s office. These clinical biomedical practices share an underlying individualistic assumption of persons as a solely isolated conception, whereby the ethical course of treatment creates its measurement of care in terms of medical causes solely within the biological, chemical, and physical phenomena of an individual (Fee and Krieger 1993, 1477-1486). Whether that be attending to a compound fracture in the ER or changing prescriptions at the family doctor’s office, this biomedical space is necessarily individualistic since it defines and appraises treatment by the success of ‘fixing’ either a physiological or biological medical problem.

1.5 Relational Care in End of Life Care

End of life ethics discusses issues surrounding end of life decision making, autonomous decision making, and the importance of advance directives (Karnik and Kanekar 2016, 1-6). A relational theory of ethics echoes the core values of end-of-life care. End of life care ethics requires an approach that is relational rather than individualistic. An approach that understands the relational nature of end-of-life care goals clarifies the intrinsic ways in which proper care for dying individuals is inseparable from communities, families, volunteers, and loved ones. Proper care, in this case, attends to both the patient and their surrounding loved ones, whereby both

parties have access to physical, psychological, psychosocial, and spiritual support from health care practitioners. These core values operationalize in the form of shared decision-making and advance-care planning (Gomez-Virseda, Maeseneer, and Gastmans 2020, 10).

Palliative care is a branch of end of life care that aims to alleviate the suffering of those who cannot be cured and are dying; aiming to prevent and relieve physical, emotional, social, or spiritual suffering associated with any chronic or life-threatening illness and to promote dignity in suffering, death and dying, for both the patient and family members involved. The World Health Organization (WHO) defines palliative care as:

An approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual (Palliative Care 2020).

An important relational aspect of the WHO’s definition is that care extends to the patient's family members and loved ones. This entails that end of life care aims to relieve suffering and improve the quality of living and dying for patients and their loved ones (Canadian Hospice Palliative Care Association (CHPCA) 2021). In this vein, providing quality care is not confined to an individual, but instead to a network of people, including both the patient and their surrounding loved ones. With these relational aspects of care in mind, I propose that end of life care is fundamentally relational in two ways: 1) Attending to care includes family members. 2) Family members provide care for the patient. I will extend these two relational aspects of palliative care to long-term care, for long-term care adopts a similar relational approach to end of life care. These two spaces of end of life care practices (palliative and long-term care) are similar in their fundamental and intrinsic involvement of others. Long-term care differs from palliative because patients are not necessarily on a temporally sensitive agenda with respect to death, as they tend to be in palliative care. However, this distinction is merely clinical and does not change the underlying principles of relational care of which these two spaces share. The paramount point is that what really matters to an individual and their loved one’s approaching death is essential, making end of life care fundamentally a relational practice. This should be considered when constructing an ethical framework for clinical practice.

Albeit not all individuals approaching death have family or loved ones surrounding them, say in the case of relatives being geographically separated. In this circumstance, the individual may find a relational approach to dying is not conducive to their needs and prefer a biomedical approach since they do not have this relational network associated with relational care. However, the biomedical model will still not suffice during end of life care for a methodological reason: Biomedical practices embed the assumption that proper care and an individual’s paramount concern is ‘fixing’ either a physiological or biological medical problem. But dying is a process, not a problem, in which there is no finite solution for solving. When a person approaching end of life adheres to the concerns imposed by the biomedical model, they will experience the symptomatic occurrences of dying as a cascade of problems, as opposed to a relational process.

1.6 Relational Autonomy Based on end-of-life care values previously identified, I argue that a relational approach of autonomy is fundamentally necessary for providing quality care for patients approaching end of life in either palliative care or long-term care settings. Specific to end of life care spaces, empirical studies show that decision-making exclusively focused on the individual exercise of autonomy fails to align well with patients’ preferences at the end of life (Gomez-Virseda et al. 2020, 7-8). Individualistic autonomy is commonly compromised in end of life care settings, as many patients become non-verbal and rely on their family for advanced medical planning and end of life decisions in order to provide proper care during the dying process (Karnik and Kanekar 2016, 2-3). The reality that many patients in end of life care are non-verbal extends an essential relational aspect of autonomy to family members, as being pain reporters is an essential practice of care and an integral aspect to quality care at the end of life (Section 2.1 will expand on this further). Moreover, family members provide insightful perceptions of pain behaviour and pain management in adult patients unable to self-report, whereby family members take on the role of qualitative pain reporters (Kenny, Sherwin and Baylis 2010. 9-11; Richard-Lalonde et al. 2018, 316). This lends itself to an understanding of relational autonomy that discredits how individual autonomy, whereby an autonomous agent’s definition is exclusive to an individual, can be compromised during end of life. I argue that this account supports an understanding of relational autonomy that is procedural rather than substantive and causal as opposed to constitutive.

Procedural conceptions say that autonomous preferences should be arrived at by certain processes instead of having certain contents (Khader 2020, 508). Whereas substantive approaches to autonomy are value-laden, meaning that “the contents of the preferences or values that agents can form or act on autonomously are subject to direct normative constraints” (Benson 2005, 133). There is debate within feminist theorists' relational approach to autonomy on whether autonomy is best understood procedurally or substantively (Sherwin and Stockdale 2017, 10). In the context and space of end-of-life care, I argue that relational autonomy ought to be considered procedurally and causally, with care in the dying process to be seen as a community process and not a finite event. In this account of procedural relational autonomy, the patient is not a confined individual; but a network of family members, loved ones, and caregivers. Substantive approaches to autonomy in end of life care will fail to provide adequate care since substantive conceptions place normative constraints on the contents of the preference of autonomous agents. McLeod’s substantive approach to autonomy claims that certain moral attitudes towards oneself are necessary to acting autonomously and that “acting autonomously, we strive to meet moral responsibilities to the self,” whereby being autonomous requires treating oneself well in a moral sense” (McLeod 2002, 121-126). These normative constraints to defining autonomy create restrictive moral parameters in end-of-life situations, for instance, during advanced care planning. Advanced care planning in Canada (APC) is defined as:

A lifelong process of thinking and talking about the kind of health and/or persona care you would want if – at some point in your life- you cannot speak for yourself. During the conversations that are a part of (ACP), you share your values, beliefs, and wishes, and make sure the people you’ve chosen to speak for you understand what matters most to you (CHPCA 2021).

It is paramount to note that ACP recognizes that people's values and preferences can change over time and provides them with the opportunity to revisit their planning continually (CHPCA 2021). Substantive approaches to autonomy stipulate that agents’ psychologies (by practical extension, one’s values, beliefs, and care goals) fascine onto the world in the right ways, such that their preferences are only deemed autonomous if and only if their contents correspond to morally permissible features of the world. What is paramount at the end of life is unique to each individual and their family; by defining autonomy substantively, the end-of-life process is subject to particular moral parameters that may not match the care goals defined in ACP. The relational networks that inform patient decision-making at end of life cannot be subject to the

normative constraints that a substantive approach to autonomy entails; this would imply that there is a right way to withgo the dying process. In the context of end of life care, relational autonomy must be considered procedurally since administering care is to give weight to the lived experiences and resources of all the family members, communities, and caretakers involved in the patient's dying process. The dying process is different for everyone and cannot be confined by substantive normative constraints; whereby the dying process is to be seen through the lens of many, as a community process, in which death is not a finite event but a procedural process consisting of collective decision making, shared bereavement and continued care for the surrounding loved ones. Furthermore, the account I am arguing on behalf is a causal account of autonomy, as opposed to constitutive, which stipulates that interpersonal or social conditions are a part of the defining features of autonomy (Christman 2004, 147). Causal conceptions of autonomy acknowledge the impact of social relationships and socio-historical circumstances on agents' capacities, which is importantly relevant at the end of life with the decline in patient’s autonomous capacities. Proponents of causal accounts of autonomy indicate that autonomous agents are essentially successors, heirs to other persons who formed and cared for them, where an agent's social relationships influence autonomy (Baier 1985, 85; Nedelsky 1989, 12). On this view, a person’s social relationships influence the development of autonomy, “if we ask ourselves what actually enables people to be autonomous, the answer is not isolation, but relationships—with parents, teachers, friends, loved ones” (Nedelsky 1989, 12). This causal

and procedural account of autonomy lends itself well to end of life care ethics. In the last three decades, end of life care ethics has been working to promote this kind of relational autonomy through a community-based dying model, whereby dying ought to be seen as a community event. This model follows a concept in end-of-life care that has emerged in the last few decades, namely, health-promoting palliative care (Kellehear 1999). COVID-19 has opened our eyes to the social isolation of our elderly and dying. We ought to harness this increased awareness as a vector for moving towards relational ethical models that have been percolating in the periphery of the palliative care and end of life care field.

Individual Care model: Where patients present a problem, and medical professional provides a Relational Care Model: Where a patient is not confined to a single individual but extends to the

solution Power is distributed between patient and medical professional (share decision making). The solution is situated in terms of disease and its causes solely within the biological, chemical, and physical phenomena of an individual (Fee and

Krieger, 1993, p. 1481).

network of family, loved ones, care givers. The solution is not contained to a finite event or specific psychological result. The treatment is a relational process, where solutions are qualitatively interpreted.

Figure 1. Individual Versus Relational Care Process

Recently, Serene Khader argued in her paper "The Feminist Case Against Relational Autonomy" that constitutive conceptions of relational autonomy (also referred to as socially constitutive conceptions of autonomy) that make idealized social conditions a requirement of autonomy reinforce oppression. Khader does this by arguing that in requiring the presence of idealized social conditions, a constitutive relational conception of autonomy fails to meet two theoretical roles that feminist autonomy ought to convey; the roles of anti-oppressive character ideal and paternalism-limiting concept (2020, 499-526). At this time, one should note that feminist philosophy aims to develop moral and political concepts that guide action in ways that reduce oppression (Khader 2020, 500). Khader’s argument against relational autonomy is limited to constitutive accounts, where autonomy plays a role in justifying normative claims (2020, 501). Although Khader provides a rigorous argument against these constitutive conceptions of autonomy as not meeting the requirements of feminist philosophy, she fails to provide a satisfactory reply to causal-procedural accounts of relational autonomy. Where constitutive relational autonomy fails to meet the antioppressive character ideals that Khader assumes that feminist theory ought to entail, causalprocedural accounts of relational autonomy succeed.

§2 – COVID-19 Visitor Restrictions

It is essential to unpack the consequences of relational models of care during a pandemic when placed under a biomedical institution. These care spaces namely being long-term care, palliative care, and assisted living care. Doing so will help reveal how the COVID-19 visitor restrictions adversely affected end-of-life care significantly more so than other spaces of care.

Biomedical ethics is based on an individualist ethical framework, whereas end of life care is centralized through a community-based relational framework. People have already begun to note that ethics centred around the individual does not sufficiently address the care needs of those in long term and palliative care (Wynne, Petrova, and Coghlan 2020). As noted above, palliative care has its values rooted in a collective-community model of care, yet is subject to the same kind of COVID-19 guidelines and restrictions put in place for hospitals, which are typically biomedical endowed spaces, following an individualistic ethical framework and model of care. As part of the public health pandemic response, these necessary institutional disease prevention measures result from a bioethical framework of care. That is to say that the Canadian health authority, as a biomedical institution, is applying, during a pandemic, an individualistic ethical framework to palliative care and long-term care, which at their cores value relational practices of care. The biomedical model of care is the predominant paradigm upon which the Canadian Health Care system is built and end-of-life care makes up a sub-category of that system. However, end of life care relies on an entirely different approach because its core values are relational instead of individualistic. The next section will argue that when these two worlds collide, it creates ethical tension between competing values resulting in a contradictory space. This ethical tension is cultivated when the delivery of palliative care (as relational) is happening in a biomedical space (as individualistic), which creates contradictory spaces for relational care practices. To demonstrate this, I will discuss how the COVID-19 visitor restrictions have revealed that a biomedical framework does not provide adequate care for dying persons and their family members, nor does it provide adequate support for care staff.

2.1 Pain Management

End of life care is fundamentally relational; as cited above, it extends care to the patient and their family. Therefore, what it means to provide quality care at the end of life is not to care for a single individual but the network of qualitative causal relations that intrinsically tie others to the dying process of an individual. This is a crucial difference from an individualistic approach to care; where, for instance, a biomedical model defines care as confined to a single patient and solutions are offered in the form of substantial physiological outcomes (Figure 1). The ethical theory that guides these biomedical spaces are, therefore, contradictory to the values of end of life care.

The COVID-19 visitor restrictions have created undisputable barriers for professional caregivers to provide proper care for family members throughout the dying process. The most apparent and heart-wrenching have prohibited family from seeing their dying loved one. Additional barriers raised by the COVID-19 visitor restrictions in providing care for family take a form such as lack of opportunity for vigil and goodbyes, failure to provide psychosocial support to family members, inability to provide spiritual care support, and limited opportunities for medical information sharing (Bolt et al. 2020; Wallace et al. 2020).

In the practical application of relational care, the responsibility of administrating care also extends to family members, loved ones, and volunteers. In this sense, a relational model of care distributes the caretaking power to the family, the patient, and medical professionals (e.g., longterm care worker or palliative care nurse). Consequently, long-end of life care relies on pain management as a collective responsibility since family members, caretakers, and even volunteers are active participants in caregiving (Albrecht et al. 2011, 11). Pain management is an essential aspect of quality of care; it is a part of the very essence of both individual and relation care models (Carvalho et al. 2018). In fact, there is a growing movement toward viewing the concept of pain management as a fundamental human right (Brennan, Carr, and Cousins 2016). There are research limitations in making evident that the lack of family visitation has adversely affected patient pain and symptom management in end-of-life care since the family members unique ability to qualitatively infer patient's pain levels is hard to capture in quantifiable pain management metrics (Strang et al. 2020). The additional information about a patient's pain expression is an inherently relational aspect of care. Family members, loved ones and volunteers provide insight into the specific qualitative behaviours indicating pain. An antidotal example of this relational phenomenon is as follows: A husband of a non-verbal wife in long-term care was informed by a caretaker that she had suffered a fall but that her vitals were stable. When the husband was finally able to visit her, he immediately knew something was wrong and it turned out that her hip was broken. With the patient unable to verbally communicate this to her caregiver, her husband provided qualitative insight into proper pain management. Nurses and long-term care workers cannot qualitatively judge the small minute differences in behaviour, body language and facial expressions (among other indicators) that patients exhibit to demonstrate pain; and they ought not to be expected to do so since to

understand the minute qualitative signs of a patient requires an experiential history of knowing that patient, of which no health care provider is expected to acquire. Therefore, the patient is limited to medical treatment (proper pain management) because the COVID-19 restrictions prevent family visitation. The patient loses access to proper medical care without family visitors to pay close attention to pain and symptom control as well as pain management. Consequently, the absence of family visitors also diminishes the ability to focus on the quality of life and comfort since comfort and pain are closely tied (two central values of end of life care). Here the necessity for a relational account of autonomy becomes prudent. Many patients in end of life care are non-verbal, making the relational aspect of family members being pain reporters an essential practice of care and an integral aspect to quality care at the end of life. This relational aspect of family and volunteer involvement speaks to a feminist aspect of relational care, which is not adequately addressed in the current biomedical space. Feminist bioethics aims at going beyond the diagnosis and analysis of a problem, and points towards a future of social and political change (Donchin and Scully 2015, Feminist Methodologies, para. 23). Since the locus of expertise does not fall strictly within the medical expert's realm nor strictly within the realm of the patient and physician, the power is distributed to the nexus of people connected to the dying persons. In a classical biomedical model, the locus of expertise is the physician or medical professional. In contrast, an end of life relational approach distributes the power of expertise to family members, loved ones and even volunteers. If it is true that the power to report and address pain and symptoms management lies with the family, then it is the caretaker's job to facilitate that management and make it happen in order for the patients to receive adequate care. If a health institution fails to facilitate relational caregiving, then the collective responsibility of pain management is exclusively given to the medical caretaker in a given biomedical space. Nevertheless, biomedical spaces are built from individualistic principles, which do not accommodate end of life care values. Not only do the COVID-19 visitor restrictions directly and actively prevent quality care during the dying process by imposing barriers to proper care for family members and by prohibiting collective relational pain management, but I will now argue that the COVID-19 visitor restrictions implicitly do so by increasing the distress of healthcare providers.

2.2 Caregivers Distress

I argue that medical professionals and end of life caregivers have acquired a disproportional amount of distress from the COVID-19 visitor restrictions compared to other care spaces because they have to make up for the substantial relational aspect crucial to end of life care. This is not to discredit the distress that COVID-19 has invoked in all fringes of health care workers, but instead highlight the relational necessity in end of life care. Subsequently, end of life caregivers (whether it be palliative care nurses or long-term caregivers) have to navigate how to provide relational care in a biomedical space. Nurses have to field video calls, learn how to use technology, organize advanced planning with family, and fend off distressed family members angry at not being able to visit their loved ones. Additionally, they must keep up with the frequently changing restrictions and find new ways to create medical information sharing given the imposed restrictions.

An example of this can be seen in the ability of other medical branches, such as emergency medicine, to adapt to the COVID-19 restrictions smoothly, whereas relational models of care have not been able to so easily adapt. Emergency room facilities have created and designed outdoor tents for patients with COVID-19 related symptoms, while not compromising the ability to provide adequate emergency services to those with unrelated COVID-19 symptoms. For instance, if I broke my leg, I would be able to access emergency services with little worry of COVID-19 exposure. However, if I was a non-verbal resident or patient in either long term care or palliative care, I would not have the care of my loved ones to provide necessary qualitative insight, to address impeccable pain management, and for them to tell the medical professionals that I am in pain. Relational medical settings struggle to adapt to the new challenges posed by the COVID-19 visitor restrictions because biomedical institutions are spaces that operationalize policy and models of care which are rooted in individualism.

The reasons for increased distress in care workers indicate the tension created when a relational model of care inhabits a biomedical space. These biomedical institutions do not have the systemic resources to provide relational care because they are in a biomedical space under individualistic care ethics. That is to say, the health care's institutional infrastructure, because they are in a biomedical space, does not provide these caretakers with the skills, tools, or resources necessary to provide quality care.

3.0 Pandemic Response in Health Care: Two Guiding Principles There are two grounding ethical assumptions which I will take to be normative building blocks for the remainder of my argument regarding the public health care authority and their pandemic response to implement the COVID-19 visitor restrictions. The implemented pandemic response should rigorously adhere to the following two assumptions: 1) The pandemic response cannot compromise the ability to provide quality care to unrelated COVID-19 patients in institutionalized biomedical practice spaces. (This includes but is not limited to: acute care, emergency services, surgery services, end of life care, and long-term care). 2) The health care system should have a pandemic response plan that provides the resources, tools and skills necessary to provide adequate care for patients without compromising or exposing vulnerable groups to potential viral exposure.

As necessary disease prevention operations, the pandemic responses echo an individualistic model of care that dominates the values of relational care. Wynne, Petrova and Coghlan suggest that amid the COVID-19 pandemic the predominate ethical approach being employed is “an ethical lens shaped by clinical bioethics, with its concern for the rights and well-being of individual patients and their interactions with healthcare providers” (2020, 515). This kind of lens is fundamentally individualistic (as previously discussed). Kenny, Sherwin and Baylis argue that pandemics ethics has a narrow vision whereby the analysis of ethical concerns amid a pandemic is steeping in an individual rights discourse inherited from clinical bioethics (2010, 5). In 2018, the WHO released a guide on "integrating palliative care and symptom relief into the response to humanitarian emergencies and crises," which was the first guidance of its kind on the topic (Wynne, Petrova, and Coghlan 2020, 514). According to Wynne, Petrova and Coghlan, the WHO guide took a narrowly clinical bioethics perspective and missed crucial moral dilemmas concerning limitations of the material and human resources, patient prioritization, euthanasia, and legacy inequalities, discrimination and power imbalances (2020, 514). Moreover, in applying a clinical bioethical lens, this WHO guideline failed to account for the fundamental relational model of care that palliative care and long-term care requirements for quality care. Every practice of care in a biomedical space ought to be equipped with the supplies and resources necessary to provide adequate care in the case of a pandemic emergency. The guidelines and pandemic preparedness should have been in place in long-term care and palliative care; the increased workload that caretakers have experienced should have been accounted for to

provide proper facilitation for alternative relational modes of care. The public health authority’s decision to implement the COVID-19 restrictions did not adversely affect clinical biomedical spaces as critically as they did in end of life care spaces because clinical biomedical spaces are fundamentally governed by an individualistic ethical framework. On the other hand, long-term care and palliative care, which are practices founded by relational theory (but habit biomedical space), were adversely affected by these restrictions. I have argued that this is due to the nature of individualism that guides the biomedical model's ethical theory. Moreover, the ethical theory that guides biomedical space is not compatible with end-of-life care values. The most significant difference between these two models of care can best be explained through their contradicting accounts of autonomy; where the biomedical space understands autonomy confined to the individual, while end of life care adopts a relational understanding of autonomy, which fundamentally includes others.

Accommodating to care needs looks different depending on the ethical theory and principles of a particular care model. By not acknowledging the relational nature of an end of life care model in determining a theoretical approach to care, the dominant biomedical individualistic model overpowers relational values. End-of-life care gives weight to communities and family members' lived experiences and resources, whereby dying is a process and not a finite event. As it currently stands, long-term care planning and delivery do not emphasize the relationships between residents, their families, and staff as much as it does the biomedical aspects of care (physical clinical).

§4 – Concluding Remarks

It is paramount to recognize the moral and ethical necessities of palliative and end of life care. A failure to fully realize patients, families, and care workers' qualitative experience during end-of-life care may contribute to further distress, complicated grief, moral distress, and burnout (Wallace et al. 2020). The COVID-19 visitor restrictions have revealed that end-of-life care relies on a relational understanding of autonomy that is distinct from other healthcare branches occupying biomedical spaces. Whereby the account of relational autonomy is to be understood as a process involving the lived experience of patients, family members, and communities. The what it’s like for all parties involved in the dying process is a distinctively qualitative phenomena that is easily overlooked by a biomedical system that grounds its ethics in quantitative principles.

Capturing and operationalizing the qualitative aspects within end of life care is prudent if these models of care are to adapt to biomedical spaces in a way that does not jeopardize quality of care.

My hope is that care for the elderly and those approaching the end of life journey begins to take a more central position in everyday post-pandemic public health policy decisions and starts to play a more prominent role in our individual thinking and decision making.

4.1 Some Limitations to This Paper This paper aimed to answer why our populations approaching end of life were so adversely affected by the COVID-19 visitor restrictions. However, this paper did not address the psychological vulnerability of dying populations in relation to COVID-19 visitor restrictions. Moreover, I would like to note that the COVID-19 visitor restrictions are necessary precautions. This paper is not meant to dismiss the crucial role that empirical work in disease control entails. Instead, this paper worked to explain how the visitor restrictions, in themselves, prohibited end of life care for family members, patients and caused moral distress for caretakers. Ultimately, this paper aims to start a discussion around the ways in which health care systems institutionalize ethical theories and show that we need to recognize the values that underpin specific forms of care. Only then can we begin to build ethical systems and frameworks according to those values. A failure to recognize the underpinning values in formulating models of care and policies will create inherently contradictory spaces with systemic barriers imposed on the care practices that are incompatible with the governing space. Long-term care and palliative care are examples of a relational practice of care that face these systemic barriers in virtue of occupying a biomedical space. The relational approach to autonomy, which speaks to palliative care's qualitative and caring aspects, is faced with the challenge of adapting to how quickly they were moved into this biomedical space and clinical bioethical pandemic response.

4.2 Where to Go From Here The biomedical model is an unfit ethical theory for providing care at the end of life. End of life care does not aim to ‘solve’ or ‘fix’ physical or biological ailments but instead focuses on the uniquely qualitative aspects of living. If we are to alleviate the contradictory care space that present-day end of life care spaces face in virtue of occupying biomedical institutions, then we

must accept dying as a distinct process that is fundamentally relational. There is no physiological remedy or finite solution in caring for the dying, which makes applying a biomedical model contraindicated. Embracing dying as a community-based process will celebrate the relational aspects of end of life care that are currently stifled by their residence in biomedical institutions. A model emerging in Canada’s palliative care developments is the Compassionate Communities model (CC model) ) (Tompkins 2018). The CC model is a community-based ethical approach that promotes the idea that caregiving, dying, death, and grieving are everybody’s responsibility. Rather than focusing only on patients whose death is imminent, this palliative care approach includes compassionate and effective palliative care for all to better support their quality of life. The CC model for palliative care requires medical professionals, caregivers, and community members to be included in the continuum of care, creating a wrap-around effect to better support the patient and family approaching end of life. The COVID-19 restrictions pointed to the philosophical biomedical roots that most end of life care spaces have ended up occupying over the development of end of life care in Canada. End of life care needs an ethical framework that recognizes the quality of life of not just patients but caregivers, families, and community members. Moving forward, the CC model serves as a promising framework for promoting quality care during end of life. However, adopting the CC model comes with its challenges. To adopt this framework means we as a society must drastically change the culture of reluctance surrounding death, dying, and grieving in Canada. Igniting enduring social change around our perceptions of death and dying is essential if we are to create a culture of compassion and shared responsibility; one that, at its philosophical core, represents a feminist relational approach to end of life care ethics.

References

Albrecht, Harold, et al. 2011. “Not to be Forgotten: Care of Vulnerable Canadians.” Committee on Palliative and Compassionate Care, Parliamentary, 11.

Baier, Annette. 1985. Postures of the Mind. Essays on Mind and Morals. Minneapolis: University of Minnesota Press.

Bolt, Sascha R., et al. 2021. “Practical Nursing Recommendations for Palliative Care for People with Dementia Living in Long-Term Care Facilities During the COVID-19 Pandemic: A Rapid Scoping Review.” International Journal of Nursing Studies 113 103781: 1-13.

Benson, Paul. 2005. “Feminist Intuitions and the Normative Substance of Autonomy.” In Personal Autonomy: New Essays on Personal Autonomy and its Role in Contemporary Moral Philosophy. Edited by J. Stacey Taylor, 124-142. Cambridge: Cambridge University Press.

Brennan, Frank, Daniel Carr, and Michael Cousins. 2016. “Access to Pain Management—Still Very Much a Human Right.” Pain Medicine 17, 10: 1785–1789.

Canadian Hospice Palliative Care Association. 2021. Hospice Palliative Care. Retrieved from: https://www.chpca.ca/about-hpc/.

Carvalho, Anna Sofia, et al. 2018. “Ethical Decision Making in Pain Management: A Conceptual Framework.” Journal of Pain Research 11: 967–976.

Christman, John. 2004. “Relational Autonomy, Liberal Individualism, and the Social Constitution of Selves.” Philosophical Studies 117, 147.

Donchin, Anne, and Jackie Scully. 2015. "Feminist Bioethics." The Stanford Encyclopedia of Philosophy, Edward N. Zalta, ed. https://plato.stanford.edu/archives/win2015/entries/feminist-bioethics/.

——— “Feminist Bioethics: Feminist Methodologies.” The Stanford Encyclopedia of Philosophy (Winter 2015 Edition), Edward N. Zalta (ed.). https://plato.stanford.edu/archives/win2015/entries/feminist-bioethics/.

Dove, Edward S, et al. 2017. “Beyond Individualism: Is There a Place for Relational Autonomy in Clinical Practice and Research?” Clinical Ethics 12, no. 3: 150-265.

Fee, Elizabeth, and Nancy Krieger. 1993. “Understanding Aids: Historical Interpretations and the Limits of Biomedical Individualism.” American Journal of Public Health 83, no. 10: 1477–1486.

Gómez-Vírseda, C., Y. de Maeseneer, and C. Gastmans. 2019. “Relational Autonomy: What Does It Mean and How is it Used in End-of-Life Care? A Systematic Review of Argument-Based Ethics Literature.” BMC Medical Ethics 20, 76: 6.

Karnik, S., and A. Kanekar. 2016. “Ethical Issues Surrounding End-of-Life Care: A Narrative Review.” Healthcare (Basel, Switzerland) 4, 24: 1-6.

Kellehear, Allan. 1999. “Health-Promoting Palliative Care: Developing a Social Model for Practice.” Mortality 4, no. 1: 75–82.

Kenny, Nuala P, Susan B Sherwin, and Françoise E Baylis. 2010. “Re-Visioning Public Health Ethics: A Relational Perspective.” Canadian Journal of Public Health / Revue Canadienne De Santé Publique 101, 1: 9–11.

Khader, Serene J. 2020. “The Feminist Case Against Relational Autonomy.” Journal of Moral Philosophy, 17: 499-526.

McLeod, Carolyn. 2002. Self-Trust and Reproductive Autonomy. Cambridge: MIT Press.

Mill, John Stuart. 1878. The Subjection of Women. London: Longmans, Green, Reader and Dyer.

Nedelsky, Jennifer. 1989. “Reconceiving Autonomy: Sources, Thoughts and Possibilities.” Yale Journal of Law and Feminism, 1: 7–36.

Richard-Lalonde, Melissa, et al. 2018. “Family Members’ Perceptions of Pain Behaviors and Pain Management of Adult Patients Unable to Self-Report in the Intensive Care Unit: A Qualitative Descriptive Study.” Canadian Journal of Pain 2, no. 1: 315-323.

Sherwin, Susan, and Katie Stockdale. 2017. “Whither Bioethics Now? The Promise of Relational Theory.” International Journal of Feminist Approaches to Bioethics 10, no. 1: 7-29.

Strang, Peter, et al. 2020. “Dying From COVID-19: Loneliness, End-of-Life Discussions, and Support for Patients and Their Families in Nursing Homes and Hospitals. A National Register Study.” Journal of Pain and Symptom Management 60, no. 4: e2–e13.

The Government of Canada. February 16, 2021. [Coronavirus (COVID-19) Canada’s Response] Public Health Ethics Framework: A Guide for Use in Response to the COVID-19 Pandemic in Canada. Retrieved from: https://www.canada.ca/en/publichealth/services/diseases/2019-novel-coronavirus-infection/canadas-reponse/ethicsframework-guide-use-response-covid-19-pandemic.html

Tompkins, Bonnie. 2018. “Compassionate Communities in Canada: It is Everyone’s Responsibility.” Annals of Palliative Medicine 7, Supplement 2: S118-S129.

Wallace, Cara L., et al. 2020. “Grief During the COVID-19 Pandemic: Considerations for Palliative Care Providers.” Journal of Pain and Symptom Management 60, no. 1: e70–e76.

Wikler, Daniel, and Dan W. Brock. 2008. “Population-Level Bioethics: Mapping A New Agenda.” In Global Bioethics: Issues of Conscience for the Twenty-First Century. Edited by Ronald Michael Green, Aine Donovan and Steven A. Jauss. London: Oxford University Press.

World Health Organization. August 5, 2020. Palliative Care. Retrieved from: https://www.who.int/news-room/fact-sheets/detail/palliative-care.

Williams, Allison M, et al. 2010. “Tracking the Evolution of Hospice Palliative Care in Canada: A Comparative Case Study Analysis of Seven Provinces.” BMC Health Services Research 10, no. 1.

Wynne, Keona Jeane, Mila Petrova, and Rachel Coghlan. 2020. “Dying Individuals and Suffering Populations: Applying a Population-Level Bioethics Lens to Palliative Care in Humanitarian Contexts: Before, During and After the Covid-19 Pandemic.” Journal of Medical Ethics 46, no. 8: 514–25.