Legal and rights consciousness

“Legal consciousness” (LC) refers to the ways people understand, experience, and engage with the law in their everyday lives. The concept emerged within the law and society tradition. In her seminal work Getting Justice and Getting Even, Sally Engle Merry defines LC as “the ways people understand and use the law” (Merry Reference Merry1990: 5), emphasizing the practical aspects of how individuals interact with legal systems, norms, and rules. LC research emerged from this tradition in the 1980s–1990s, from Trubek’s description of the concept as “all the ideas about the nature, function, and operation of law held by anyone in society at a given time” (Trubek Reference Trubek1984: 334) to McCann’s account of it as an “ongoing, dynamic process” of constructing one’s relationship to the social world through legal discourse (McCann Reference McCann1994: 7). Ewick and Silbey’s book The Common Place of Law: Stories from Everyday Life (Ewick and Silbey Reference Ewick and Silbey1998) further developed the concept, arguing that LC is produced when people deploy legal ideas to describe, comply with, or resist various situations. Their work highlights the central idea that “legality is produced” in everyday interactions, framing law not just as a formal system but as something integral to social practice (Ewick and Silbey Reference Ewick and Silbey1998: 45). The framework has generated a rich body of scholarship spanning diverse contexts from comparative studies across Bulgaria and Fiji (Hertogh Reference Hertogh2016; Larson Reference Larson2004) to analyses of workplace dynamics or crises response (Jacobs Reference Jacobs2007), (Hirsh Reference Hirsh2010) and theoretical refinements of the concept itself (Chua and Engel Reference Chua and Engel2019; Halliday Reference Halliday2019; Horák Reference Horák2021; Silbey Reference Silbey2005).

While LC encompasses general orientations toward law and legality, rights consciousness (RC) narrows the focus to how people conceptualize what they are owed or entitled to, and how they might act upon those understandings. In some contexts, rights claiming has become so prevalent that, as Rosenberg said, “Americans equate what they want with a right to it” (Rosenberg Reference Rosenberg2009). Yet in some contexts, there is very little use in the concept of rights to articulate an interest, personal or collective.

Scholarship on RC consistently shows that it is profoundly structured by the institutional and organizational settings in which people act. Marshall, writing on the context of sexual harassment policies, shows that RC is significantly shaped by the organizational practices and management responses to harassment within workplaces (Marshall Reference Marshall2005: 91). Young’s work on criminal procedure similarly highlights the distinct nature of RC in criminal contexts against civil settings (Young Reference Young and Sandefur2009: 73). These institutional forces coexist with more diffuse, bottom-up processes: Şerban defines RC as a recursive social practice, not bounded by formal state law, constructed both above and below official legal institutions (Şerban Reference Şerban2018: 737–738), while Aaronson and Barzilay’s historical analysis similarly shows it evolving through social movements, political activism, and everyday struggles (Aaronson and Barzilay Reference Aaronson and Barzilay2019). Engel and Munger demonstrate that LC is a dynamic, life-course process: in their study of individuals with disabilities after the Americans with Disabilities Act (ADA), understandings of law and rights evolve through everyday interactions structured by gender, race, class, community ties, and institutional encounters. In this sense, RC is not fixed or solely law-driven, but is continually reconstituted through an ongoing, often implicit dialogue in which individuals situate themselves in relation to the social world around them (Engel and Munger Reference Engel and Munger2003).

These insights add to the growing scholarship emphasizing the relational dimensions of LC and RC (Chua and Engel Reference Chua and Engel2019). A key argument is that LC is not merely an individual orientation toward law but a relational process that emerges through interactions among people, institutions, communities (Chua and Engel Reference Chua and Engel2019; Merry Reference Merry1990; Morgan Reference Morgan1999), and familial efforts (Goluboff Reference Goluboff1999: 777). Young and Chimowitz show how LC is produced relationally in parole hearings, where legal meaning is co-constructed between commissioners and candidates through interactional cues about remorse and suitability for release, offering a clear empirical illustration of relational LC in action (Young and Chimowitz Reference Young and Chimowitz2022). In a similar spirit, Nielsen situates relational LC within a broader framework of relational rights, calling for attention to the interdependence between individuals, institutions, and material contexts in shaping the lived experience of law (Nielsen Reference Nielsen2024). Together, this literature highlights that RC is constituted through interpersonal, institutional, and material relations rather than residing solely in individual attitude or institutional order.

Building on this relational turn, this study contributes to LC and RC scholarship by showing how rights can emerge from below through everyday institutional interactions. Drawing on the concept of de facto rights, it demonstrates how families, clinicians, and staff collaboratively negotiate the moral and institutional contours of visitation to allow visits during crisis. Through these encounters, RC develops relationally via comparison, imitation, and dialogue across hospital settings, revealing how legality itself is locally constructed in each hospital.

Rights consciousness in healthcare settings

Healthcare institutions present a particularly challenging environment for understanding and claiming rights, as institutional authority, professional expertise, and patient vulnerability create distinct dynamics. Medical professional authority is particularly strong and far-reaching, with doctors wielding significant discretionary power that stems from their expertise and professional status (Abbott Reference Abbott1988; Beckett and Hoffman Reference Beckett and Hoffman2005; Starr Reference Starr1982). Hospitals operate under distinct institutional logics of risk management and efficiency, which can conflict with individual rights and needs and shape the LC and RC of stakeholders profoundly. Kirkland and Hyman show that in healthcare contexts, patients’ civil rights concerns are often reframed as consumer-service issues rather than legal claims, a shift driven by the marketization of healthcare that effectively demobilizes civil rights in clinical settings (Kirkland and Hyman Reference Kirkland and Hyman2021: 277). While this dynamic is especially pronounced in the US, where market logics shape healthcare more strongly, similar processes have been observed in publicly funded systems with partial privatization.

Furthermore, hospitals are full of non-legal professionals functioning as legal intermediaries who shape how rights are understood and mobilized. Pélisse argues that such intermediaries act as everyday legislators who determine which rights are enforceable and which are ignored in practice (Pélisse Reference Pélisse2019). Similarly, Kirkland and Hyman (Reference Kirkland and Hyman2021) show how grievance handlers in hospitals – typically nurses who have moved into administrative roles – become the “law in between,” implementing formal rights provisions on the ground according to their own professional logics and toolkits, “attuned to a different set of legal and regulatory demands specific to healthcare” (276).

On the receiving end, patients and their families are typically preoccupied with immediate health concerns, making them less likely to frame their experiences in legal terms or pursue rights claims. Halliday, Kitzinger, and Kitzinger examined the LC of family members of patients with chronic cognitive disorders in end-of-life conditions. They found that relatives’ vulnerability and dependence on medical care complicated their ability to assert rights, as many feared that challenging medical authority would result in worse care for their loved ones (Halliday et al. Reference Halliday, Kitzinger and Kitzinger2015: 61–64).

A groundbreaking contribution to understanding rights in healthcare settings comes from Heimer and Tolman’s concept of “de facto rights.” Through ethnographic fieldwork and interviews conducted in five HIV/AIDS clinics across the US, South Africa, Thailand, and Uganda, they identified de facto rights inductively by observing how clinic workers handled patients’ access to care. Strikingly, they found that even in clinics where formal rights to health were weak or absent, patients nonetheless benefited from stable, recurring organizational practices like guaranteed access to antiretroviral drugs and inclusion in treatment programs. Over time, these discretionary acts became institutionalized within clinic routines and policies. Heimer and Tolman thus found de facto rights not in legal texts or explicit discourse but in the organizational regularities through which caregivers transform professional discretion into dependable, collective entitlements – rights in effect rather than rights on paper (Heimer and Tolman Reference Heimer and Tolman2021). Despite not being enforceable in traditional legal forums nor portable across contexts, these de facto rights can have substantial impact on patients’ access to care. This framework corresponds with Heimer’s earlier work on institutional competition in neonatal intensive care units, which demonstrates that even the realization of formal legal rights guaranteed by statute or judicial decision depends on how they are translated into organizational routines (Heimer Reference Heimer1999). Applying these insights to visitation in practice: who can visit, when, under what conditions, and with whose authorization depends on the organizational processes designed to manage visitations.

Heimer and Tolman show that de facto rights arise from professional norms, clinical discretion, and institutional improvisation, but do not elaborate on the normative sources of clinicians’ authority to act this way. Building on their framework, this study explores the internal normative foundations that guided hospital staff who maintained visitation rights during the crisis. These included commitments to patient recovery, family-centered care, emotional strain, administrative spillover, and professional expertise – together forming an internal normative order that sustained the practice of visitation despite its precarious legal status.

This normative infrastructure is grounded in an internal responsibility to care: the organizational practices Heimer and Tolman (Reference Heimer and Tolman2021) describe show how a sustained ethic of care can generate rights from within, as acts of responsiveness gradually solidify into institutional norms. As sociolegal and ethnographic studies of hospitals and shelters have shown, caregivers often translate moral responsibility into stable organizational routines that perform the work of law, even without formal legal mandates (Brodwin Reference Brodwin2013; Heimer and Staffen Reference Heimer and Staffen1998; Ranasinghe Reference Ranasinghe2017). This study extends the framework of de facto rights by clarifying the internal normative order that sustains them, showing how professional ethics of care function as a moral infrastructure through which rights are generated and maintained within institutions – bridging, in practice, the classical divide between ethics of care and ethics of justice (Gilligan Reference Gilligan1982, Reference Gilligan2023; Held Reference Held2005; Tronto Reference Tronto1993).

Rights consciousness in crisis

A critical dimension of this analysis is the exceptional context of emergency, which fundamentally alters how rights are perceived, claimed, and enforced: during public health crises such as pandemics, individual rights are traditionally subordinated to collective health interests (Chia and Oyeniran Reference Chia and Oyeniran2020; Hirsh Reference Hirsh2010). Jacobs (Reference Jacobs2007) study of the 2003 SARS crisis found that public health officials primarily exercised authority through informal mechanisms of persuasion, invoking legal authority only when faced with non-compliance. These informal, judicially unreviewed decisions produced significant hospital-to-hospital variation (Jacobs Reference Jacobs2007: 524–525) and what Jacobs calls a “differentiated legal consciousness,” in which perceptions of rights and their enforceability vary by one’s position in the crisis.

Alongside this variability in how rights are perceived during emergencies, sociolegal research also observes that many rights are not recognized as such until their withdrawal. Stryker’s research suggests that people often do not perceive something as a right until they are deprived of it (Stryker Reference Stryker2003). Revillard’s work demonstrates this phenomenon further, showing that some rights are invisibly realized through routine practice and only become visible when denied (Revillard Reference Revillard2019). Accordingly, the crisis circumstances can theoretically spark an RC by depriving taken-for-granted rights in an emergency. At the same time, scholars note that in crisis conditions the recognition of basic rights violations does not necessarily translate into a sense of grievance. Halliday et al. (Reference Halliday, Jones, Meers and Tomlinson2024), studying UK COVID-19 lockdown perceptions, found that although many regarded the restrictions as rights violations, most did not feel aggrieved, viewing them as balanced and necessary – prompting a call to distinguish RC from a sense of grievance. This conflict is echoed here: the present study reveals that feelings of injustice may arise even without RC, as people are questioning whether state limitations indeed serve the common good. Yet crises are not static. As the pandemic unfolded, the institutional and personal risks facing hospitals, healthcare workers, and families changed substantially – from uncertainty and acute infection risks during the early waves to vaccination, accumulated clinical knowledge, and increasing pressure to restore ordinary care. Accordingly, the analysis in this study examines each phase of the pandemic separately, tracing how these changing conditions shaped LC and responses to visitation restrictions as the crisis unfolded.

Visitation as a fragile patient right

The legal right to visitation emerged from social, legal, and medical developments in the late twentieth century. In the early days of modern medicine, hospitals were perceived as hazardous and contagious environments requiring strict isolation of patients (Annas Reference Annas1975: 141; Smith et al. Reference Smith, Watkins and Hewlett2012: 41–42). Throughout the late nineteenth and early twentieth centuries, patients were often left alone for extended periods, sometimes months, as visits were seen as infection vectors rather than sources of comfort (Mooney and Reinarz Reference Mooney and Reinarz2020). This isolation regime spurred early public campaigns: parents of hospitalized children, maternity patients, and family organizations mobilized against exclusionary policies, framing physical presence as essential to dignity rather than risk (Annas Reference Annas1975: 141). Over time, these struggles intersected with broader transformations in medicine and society: the introduction of sanitary and pharmacological means to control infection, the rise of patient rights movements advancing informed consent and privacy, and the growing recognition within the social sciences and nursing that family members play a vital role in recovery (Davidson et al. Reference Davidson, Powers and Hedayat2007). Together, these developments rebalanced the moral and professional calculus of visitation. Family presence, once deemed dangerous, became both possible and desirable as an integral element of humane, patient-centered care.

The legal recognition of visitation rights followed. Early normative foundations appeared in postwar human rights instruments – the Universal Declaration of Human Rights (1948), the International Covenant on Civil and Political Rights (1966), and the International Covenant on Economic, Social and Cultural Rights (1966) – which, though never mentioning hospital visitation explicitly, established a moral baseline against arbitrary interference with family relationships and affirmed a holistic understanding of health inclusive of emotional and social well-being (Lassi et al. Reference Lassi, Jiang and Du2025). Building on this foundation, the World Health Organization incorporated family engagement into its Patient Safety Rights Charter, recognizing it as an element of quality healthcare (World Health Organization 2024: 8).

From the late twentieth century onward, national jurisdictions began to codify these principles: France (Code de la santé publique, Art. L1112-2-1) and the UK (Health and Social Care Act 2008 (Regulated Activities) Regulations 2014, Section 9A) enacted similar protections, and in the US, facilities participating in Medicare and Medicaid must allow patients to receive visitors of their choosing without discrimination (42 C.F.R. § 482.13(h)). In Israel, a right to visitation was codified in the Patients’ Rights Act (1996), subject to medical considerations. This provision was later elaborated in Ministry of Health circulars regulating visiting hours and conditions (Ministry of Health (Israel) 2007). In the context of dying, although the law does not explicitly define a right to receive visits at the end of life, provisions in the Dying Patient Act (2005) reflect a normative commitment to presence and accompaniment of the dying person. Taken together, these instruments illustrate how the right to visitation, though often absent from the legal lexicon, emerged through declarative human rights discourse, transported into domestic laws and local administrative practice, thus becoming a law “in action” as families and institutions both committed to proximity and care within the hospital walls.

Yet, despite its gradual institutionalization, the right to visitation remains a tenuous one, deeply embedded in hospital routines but only loosely anchored in formal law. Hospital visitation exemplifies what this study terms a fragile right: a right sustained by strong institutional practice but weak formal legality. Strong practice means hospitals treat the right as standard operating procedure, entrenched through professional habit in organizational routines and patient expectations. Weak legality means the right lacks firm statutory or judicial grounding, either omitted from legislation or articulated in vague, discretionary terms. For instance, the Israeli Patients’ Rights Act merely provides that patients “are permitted” to receive visitors “according to arrangements determined by the director of the medical institution.” In practice, however, visitation is treated as routine: families circulate through hospital wards, bring food and personal items, and often participate in consultations with medical staff. This disjuncture between weak legality and strong practice renders visitation a fragile right: one that exists de facto but remains institutionally vulnerable, dependent on professional discretion and administrative tolerance. It persists through professional norms rather than enforceable rights and can be restricted or suspended under changing institutional priorities or emergency conditions. This usage partially overlaps with Revillard’s use of the same term in the context of disability rights in France (Revillard Reference Revillard2023). Like Revillard, I use the concept to describe rights whose legal recognition does not ensure their effective realization. The direction of the gap, however, differs. In Revillard’s account, fragility arises because practice fails to catch up with the law. In the case of visitation, by contrast, the right is only weakly codified, while robust institutional practices sustain it in everyday life. This study therefore uses fragility not only to capture vulnerability, but also to examine the conditions under which rights endure despite weak legal status.

Understanding visitation as a fragile right aligns it with a broader class of patients’ rights that share this dual nature: strong in practice yet soft in law. One such example is the right of family members to participate in medical decision-making. In Israel, the Dying Patient Act does not give family members formal legal authority over medical decisions, yet clinicians routinely involve them at various stages of decision-making, even when the patient is competent (Karako-Eyal and Gilbar Reference Karako-Eyal and Gilbar2021), creating an informal but powerful expectation of inclusion. When it was abruptly suspended during COVID-19-related restrictions, families felt not only excluded but wronged – deprived of what they had come to see as their rightful place in the care process. Recognizing this pattern highlights both the everyday strength and the institutional fragility of such rights: what becomes deeply embedded in practice may still rest on uncertain legal ground, and when crisis strikes, what is routine can quickly become revocable.

The notion of fragile rights offers a theoretical contribution to socio-legal scholarship by capturing a form of legality that exists strongly “in action” yet remains institutionally vulnerable. Drawing on this study’s findings, the analysis shows how hospital staff and visitors jointly move the right to visitation into the realm of the non-enforceable through everyday negotiation and boundary work – fragility, in other words, is not merely descriptive but a social process that can also be undone. This framework thus provides an analytic lens for examining other patients’ rights and welfare entitlements that appear stable in routine settings but easily unravel under institutional or emergency pressures.

Boundary work in crisis: from rights to gifts

Hospital visitations are a fragile patient right. In ordinary times, they rely far more on hospitals’ internal norms and routines than on external legal enforcement. Yet in times of crisis, their legal standing rests on institutional goodwill more than on statutory authority. Faced with emergency conditions, hospitals must decide what counts as “essential” and what can be suspended. This process mirrors what Kirkland and Hyman (Reference Kirkland and Hyman2021: 283–284) describe as the “clinical versus nonclinical distinction” in healthcare settings – a division that relegates the social and emotional dimensions of care to the margins of medical legitimacy. In such moments, visitation and family presence are redefined as non-essential, peripheral to care itself.

This reclassification represents a form of boundary work, the rhetorical and organizational labor through which professionals demarcate the borders of their jurisdiction and authority (Jasanoff Reference Jasanoff1987). By defining what belongs within medicine’s legitimate domain and what lies outside it, boundary work not only allocates scarce resources but also redefines the legal and moral status of such rights. It is within this space of shifting boundaries that visitation becomes, as Heimer and Tolman (Reference Heimer and Tolman2021: 574) describe, a “luxury”: a discretionary act granted by caregivers rather than an entitlement claimed by patients or families. This dynamic becomes significantly amplified during crises, when visitation rights are reframed as discretionary privileges.

Hospital staff continuously framed visitations as non-essential. For the most part, hospital workers did not conceptualize visitation as a legal right. Rather, like many family members, most hospital workers thought of it as a privilege or a bonus, not a duty. Eli, chief nurse in a COVID-19 ward, described sitting at the decision-making table when his hospital decided on its visitation policy: “In the beginning, we didn’t know much about infection, and we were very harsh. We thought of visits as sort of a luxury” (Interview, December 14, 2021). The framing of visitation as negligible in times of crisis enabled hospital management to claim near-absolute discretionary power in determining visitation policies. Two hospital managerial workers referred to management’s authority as a type of “sovereignty,” with no external interference in how they enforced policy (Interview, October 15, 2021). This sovereign authority cascaded down to frontline implementation, where worker discretion predominated, particularly in the absence of written regulation. Gila, a nurse, described how informal decision-making superseded written protocols during the early waves of the pandemic: “When there were no procedures, we had to [make sure] that it [was] okay with the unit’s management … Can you let the person in? Can you handle the load? If you’re okay, let them in” (Interview, December 20, 2021). This ad hoc approach to visitation further reinforced its status as a discretionary gift rather than a right, dependent not on policy or law but on the immediate judgments and capacities of individual healthcare workers.

Even where formal visitation policies existed, their implementation remained highly discretionary. Almost half of the interviewees reported direct involvement in decision-making regarding the visitation policy, and nearly all (14) noted they had discretion to grant exemptions. Most described the criteria for such exemptions as unclear. Shula, a 54-year-old nurse, described initiating an end-of-life visit during the first wave despite formal restrictions: “We knew he was going to die, but you can’t offer this to [just] anyone – only to people who can handle it.” When asked how she determined who could “handle it,” she simply stated, “You have to be very intelligent and understand that it’s terminal” (Interview, December 26, 2021). Social standing and professional connections further influenced these discretionary decisions. Avi, a fourth-year intern whose father was hospitalized with COVID-19 in another facility, candidly acknowledged,

The sovereignty approach to visitation expressed by hospital management shaped frontline workers’ LC. As Marshall notes, organizational practices influence individual understandings of law by signaling how rules should be interpreted and applied (Marshall Reference Marshall2005: 90). Consequently, almost none of the frontline workers conceptualized visits as an autonomous, external patient right. Only two exceptions emerged, both individuals with substantive training in law/bioethics, reinforcing Kirkland and Hyman’s (Reference Kirkland and Hyman2021: 288–289) finding that former experiences with civil rights work significantly shape rights recognition.

Ethan, a 37-year-old intern, represented this minority perspective:

Ethan’s explicit and exceptional framing of visitation as a right that patients should know about and could use as a basis for complaint stood in stark contrast to the dominant view among his colleagues, who conceptualized visitation as a discretionary privilege that could be granted or withheld based on institutional priorities.

In addition to conceptualizing visitation as a luxury rather than a right, healthcare workers frequently cited work-related rationales for restricting family presence as shown in Figure 1 further reinforcing the boundary between essential medical care and peripheral social aspects of healthcare. Most notable was the burden visitations created over an overworked staff. Particularly the need to help them wear protective gear, accompany them to the patient, supervise, and answer questions. When asked whether families’ presence helped her work, Malka, a nurse, responded negatively: “No, [it] didn’t. Most of [the family members] were very hostile” (Interview, December 27, 2021). Ethan, a 37-year-old intern, articulated concerns that often remained unspoken: “What’s not said is that the nursing staff has no energy to handle them … they tend to shield their own privacy, worrying that families will see they aren’t doing their job right” (Interview, March 10, 2021).

Figure 1.

Medical staff’s justifications for restricting visitations (each bar represents the number of interviewees who mentioned this justification at least once).

Infection control emerged as another primary justification, particularly early in the pandemic. David, a deputy hospital director, explained their prioritization of safety over accommodating families: “We were fiercely criticized for being so restrictive with visitations … we didn’t want to jeopardize our staff, even at the price of economic loss” (Interview, October 18, 2021). Resource limitations further reinforced this framing, with staff pointing to both material and personnel shortages. Some feared that visitor access would exhaust protective gear, though many later said the shortage never materialized. Rachel, a second-year intern, acknowledged that practical constraints outweighed ideals: “What determined our protocol during Covid time was our capabilities and not our aspirations” (Interview, December 28, 2021). Similarly, Eli, a chief nurse, described how visitation became subordinated to essential care: “Of course, in lacking resources, medical treatment comes before social and psychological treatment” (Interview, December 14, 2021). Through such boundary work, healthcare professionals effectively relegated visitation to the periphery of legitimate medical concern.

Although presented in a graphical format, these figures should not be read as indicators of societal trends. Their purpose is to exemplify patterns that emerged from in-depth qualitative interviews, making the analytical argument more transparent rather than suggesting numerical generalizability. Accordingly, the significance of the figures lies not in how frequently particular justifications were invoked, but in what they reveal about the reasoning and considerations that shaped their decision-making.

Turning to the perspective of family members reveals that they often operated within the same normative framework articulated by healthcare professionals. Rather than challenging the premise that visitation was discretionary, family members frequently described their requests in ways that reflected the gift paradigm, expressing gratitude when exceptions were granted.

Most perceived visitation not as a legal entitlement but as a conditional privilege subject to hospital discretion, with at least 10 family members characterizing their requests for visits in terms of begging rather than asserting entitlements. Inbar, 33, who lost her father, explained: “They did let people in, but only one at a time. Sometimes [they] let in more than one, if people begged or manipulated them into it” (Interview, October 21, 2021). This power imbalance became evident in family members’ strategies of engagement. Miri, 38, who lost her father, explained how she moderated her behavior despite her distress: “They said I wouldn’t be allowed to call anymore … I didn’t want to annoy them because I worried they wouldn’t talk to me at all, so every time I approached them, I was very humble to get their empathy.” The requirement to demonstrate deference reached its apex when she was “forced to apologize” after expressing frustration to the staff (Interview, October 8, 2021). This incident exposes how hospital authority was maintained through the reconfiguration of visitation as a gift, to the point that family members felt compelled to display gratitude and restraint to sustain their access.

Within the hospital, most families internalized this framing, treating visitation as a discretionary favor. Yet once outside, through encounters with others, this boundary between gift and right began to shift, giving rise to a nascent RC and an emerging recognition of injustice. More than half (8) reported that their understanding that their rights may have been violated developed only after their relative died, following an encounter with peers or a news coverage of the issue. Only two described suspecting or realizing such a breach in real time. Scholars have noted that LC is fundamentally relational and shaped through interpersonal and community interactions rather than formed in isolation (Chua and Engel Reference Chua and Engel2019). For many relatives, it was only through engagement with peers and professionals that they began to question hospital policies they had previously accepted. Eden, 26, whose father died during the second wave, described this transformation: “I remember I thought it was a law, of the hospital, that we couldn’t visit. Only afterwards did I realize that it wasn’t okay when I started questioning everything.” Her awareness developed through conversation with a professional spiritual caregiver who helped her recognize that “it’s not okay for the hospital to take responsibility for the patient and not let the family know what’s going on” (Interview, December 5, 2021). This post-crisis awakening of RC reveals how legal awareness often emerges through collective meaning-making.

The relational dimension of LC became particularly evident when relatives connected with others who had similar experiences. These interactions generated what Markovits (Reference Markovits2005: 323) calls “egalitarian anxiety” – the realization that they had endured unnecessary and unequal burdens as they compared their experiences with others’ varying encounters with hospitals. Lili, 55, the eldest of five siblings, who lost her 86-year-old father, recounted: “We joined a group of families called ‘Covid bereaved families.’ I heard stories about different hospitals … Same patterns. Same problems … hospitals were not letting people in” (Interview, October 17, 2021). These collective spaces not only validated individual experiences but transformed them into shared understandings of injustice that sometimes led to mobilization. Deborah, 30, who lost her father after he contracted COVID-19 at work, founded one such online group. Deborah founded the group about two months after his death, following the first Yom Kippur without him, realizing that many other families were experiencing the same frustration and helplessness that her own family had endured: “I wanted to connect families and find common ground … Maybe we can do something so that it won’t happen to more families like us in the future” (Interview, October 14, 2021). Her group eventually compiled demands for Parliament members and organized protests calling for an inquiry into the healthcare system, engaging in classic legal mobilization techniques. The group grew to include more than 1,000 members and was complemented by a parallel WhatsApp group that facilitated collective mobilization and coordination.

The accounts of family members thus complete the picture. Families and healthcare professionals initially participated in a joint process of boundary work, through which visitation shifted from a right into a discretionary gift. This categorical transformation rested on the institutional distinction between “essential” medical care and the “non-essential” social dimensions of hospitalization.

Family members, lacking both healthcare knowledge and awareness of any formal legal right to visitation, found themselves in positions of supplication rather than rights-claiming. Hospital staff simultaneously reinforced this framing through their sovereign approach to hospital policymaking and implementation, with individual workers exercising significant discretion in determining which families deserved the “gift” of visitation. The relegation of visitation to the category of extra rather than necessity thus created a self-perpetuating cycle that undermined rights recognition when such rights faced their most severe threat. For most relatives, RC developed during the mourning period through peer engagement that transformed personal grief into recognition of systemic failures. The Facebook groups that emerged became crucial sites for this co-construction of RC, highlighting how rights awareness often emerges from shared experiences of injustice.

Negotiating legality: from compliance to resistance

The second phase of the crisis unfolded around questions of legality and compliance of visitation restrictions. Once visitation had been reframed as a discretionary privilege, both families and hospital staff were compelled to navigate its uncertain status in everyday practice. This section examines how legality was assumed, negotiated, and at times overtly resisted within this unstable terrain. For the most part, both relatives and staff treated hospital rules as legitimate law. Yet as frustration grew, relatives began to test the boundaries of compliance – first through individualized appeals with staff responding with selective exceptions, and later through open acts of defiance against hospital rules.

Where care becomes right

As the crisis unfolded, the Ministry of Health issued an official guidance for hospitals to allow visitations using protective gear.Footnote ¹ However, by that time, most institutions had already implemented more permissive policies themselves. Indeed, only four worker mentioned government instructions as shaping their visitation policy. This all suggests that the construction of new norms occurred largely outside formal legal channels. So, what led hospitals to relax their policies? Nearly all workers mentioned background factors, including the change of circumstances as time went by. For example, three workers mentioned the accumulation of scientific data and experiential knowledge about effective infection control, and the arrival of vaccinations in Israel in December 2020. Others mentioned the ability to accommodate visitations in an organized way. Yet, many workers exemplified that the reemergence of visitation rights under pandemic circumstances was propelled by internal moral and professional commitments, illustrating Heimer and Tolman’s de facto rights concept, established by healthcare providers concerned with patient wellbeing not because they recognized legal obligations, but because they responded to ethical dimensions and professional responsibilities (Heimer and Tolman Reference Heimer and Tolman2021: 575). Workers expressed such factors in their own language, though they can be grouped into categories. Most significant was compassion for end-of-life situations, mentioned by nearly all as driving COVID staff to allow visits in the hardest times. Other significant factors were the commitment to facilitate patients’ recovery and mental well-being and to the family’s place in the care process. Figure 2 presents an analytical synthesis of the themes emerging from staff’s accounts.

Figure 2.

Medical staff’s justifications for allowing visitations (each bar represents the number of interviewees who mentioned this justification at least once).

Some healthcare providers elevated visitations to a clinical necessity rather than a mere comfort measure. Shula, a chief nurse in a COVID ward, was explicit: “I never said no, never. The patient is more important … patient visits are a top priority. They need family next to them, something to hold on to. No medication can replace a family visit.” She observed tangible benefits when the policy changed: “When visitors started going in, it was much better for patients. It gave them strength to live and fight for life” (Interview, December 26, 2021). Nearly all workers (13) reported that the restrictive visitation policy had adverse effects on patients’ well-being. Three workers noted that the patients’ profound loneliness was a key reason for allowing visits – a concern also echoed in the Ministry of Health’s letter authorizing visitation. These practices ultimately pulled visitation back across the boundary that had relegated visitation to the non-clinical realm, reasserting it as integral to patients’ care and recovery.

Many frontline workers advocated for visits despite institutional obstacles, driven by a profound sense that family presence was essential to proper care. Many (nine) noted that decisions to allow farewell and routine visits increasingly reflected personal and institutional recognition of their importance to patients and their families. In isolated hospital wards, medical staff often function as a short-term “substitute family” for hospitalized patients who lack the support of family members (Koller et al. Reference Koller, Nicholas, Goldie, Gearing and Selkirk2006: 55). Due to the many patients needing such support, the staff encouraged the entrance of families into the ward. Four workers reported admitting visitors for patients who were highly dependent or required substantial assistance – often to ease staff workload and support medical care. Eli, a chief nurse in a COVID ward, described a dramatic shift by the third and fourth waves, when they sometimes permitted 15–20 family members for goodbye visits. When asked what prompted this change, he explained:

His account highlights how practical experience with patients’ suffering led staff to recognize family presence as a clinical necessity rather than a discretionary comfort measure, prompting them to create informal rights of access even in the absence of formal policy guidance.

The commitment to allow goodbye visits seems to have rested on superior ethical norms, or professional ethics. Many described this commitment as an ethical duty grounded in professional values that justified circumventing official policies when necessary. Rachel, a 34-year-old second-year intern, admitted: “If I had a dying patient, I would do everything in my power to let family members in so they could say goodbye. I would even break the rules, help people wear protective gear so they could go in” (Interview, December 28, 2021). Healthcare workers’ own emotional distress further catalyzed policy changes. When Gila – a nurse in a COVID ward was asked what motivated her team to permit goodbye visits during the first wave before such practices were common, she articulated this shared moral foundation: “It’s an understanding, a feeling, a perception, a value that the staff shares” (Interview, December 20, 2021). Gila appealed to what Kirkland (Reference Kirkland2008: 422) identifies as universal ethical imperatives – moral principles that transcend institutional rules and justify resisting them. Others described experiencing secondary trauma from witnessing isolated deaths and managing bereaved families who had been denied final moments with loved ones (Koller et al. Reference Koller, Nicholas, Goldie, Gearing and Selkirk2006: 53). Adam, an intern who advocated for earlier visitation allowances, recounted this psychological burden:

This moral distress among healthcare workers reveals how professional ethics can generate rights from within workers, as workers invoked broad ethical principles to justify creating exceptions to visitation restrictions.

Professional training and specialized expertise further shaped healthcare workers’ resistance to visitation restrictions: specialists with backgrounds emphasizing holistic care were particularly likely to advocate for family presence, and four participants noted that involving non-clinical professionals in policymaking heightened awareness of these emotional and social considerations. David, a deputy hospital director, reported that input from ethical oversight committees and social workers at early decision-making stages convinced administration to ease restrictions in limited situations (Interview, October 18, 2021). Shlomi, a geriatric specialist heading a COVID ward, explained: “In geriatric care, we have a palliative approach that includes saying goodbye to the person, and we thought it was crucial for family members, so we allowed it.” He observed that “with time, management understood it, that you must allow visits and be human,” suggesting how specialized professional knowledge could gradually influence institutional practices (Interview, February 21, 2021).

Another catalyst for allowing visits was administrative policy spillover – a manifestation of relational LC among healthcare institutions. Ichilov Hospital, one of Israel’s largest medical centers, permitted end-of-life visits from the pandemic’s early days, receiving favorable media coverage that influenced peer institutions (Ghermezian Reference Ghermezian2020; Scharf Reference Scharf2020). This horizontal transmission of practices created a normative benchmark that other hospitals felt compelled to meet. Three workers mentioned the Ichilov Hospital case as motivating them to relax visitations. As Oren, a nurse in a COVID ward, explained: “I remember during the first months of the epidemic, we started letting people in after we saw it happened in Ichilov, maybe after infection control worked with the doctors to understand how to exactly do it” (Interview, November 17, 2021). Such institutional mimicry shows how rights emerge through professional networks.

Taken together, these accounts reveal multiple, intersecting justifications underpinning the reemergence of visitation rights: the perceived clinical benefits of family presence, family-centered care, the emotional and operational strain on staff, the horizontal diffusion of permissive norms across hospitals, and professional expertise rooted in geriatric and palliative care. Each factor reflects an inward-looking source of authority anchored in the ethics of care and practical experience rather than external legal or bureaucratic instruction – exemplifying how de facto rights take shape through the labor of caregiving and institutional practice combining to produce legality from within.

Whereas in the early days of the pandemic families and caregivers internalized the hospital’s professional logic that redefined visitation as peripheral to medicine, healthcare workers gradually generated an RC from within: decisions to allow visits, often against institutional directives, were grounded in ethical and professional norms rather than formal legal obligations. Boundary work around visitation thus did not remain fixed – engagement with patients and families led frontline workers to gradually redraw the line, reabsorbing visitation into the logic of care itself. These findings extend the framework of de facto rights as deriving from a rooted commitment to an ethics of care (Gilligan Reference Gilligan1982; Held Reference Held2005; Tronto Reference Tronto1993).