Professionals’ perspectives on trusted persons in French nursing homes

Abstract

Background

France faces growing challenges with an aging population and neurodegenerative disorders. French health law allows patients to appoint a trusted person (“personne de confiance”) to communicate their medical preferences if incapacitated. Introduced by the Kouchner Law in 2002, this reflects a shift from paternalistic to autonomist care, emphasizing patient autonomy. Despite their importance in conveying patient wishes in nursing homes, research remains limited, with most studies focusing on hospitals.

Methods

We conducted semi-structured interviews with 14 healthcare professionals (directors, psychologists, coordinating physicians, nurse managers, psychometricians) working in or with French nursing homes from February 2021 to September 2022. Interviews lasted 26–80 min and we analyzed them using grounded theory methodology. Theoretical saturation was achieved after 9 interviews and confirmed through 5 additional interviews.

Results

Through grounded theory analysis, we identified that professionals continuously balance three competing needs when collaborating with trusted persons: patient-oriented needs (ensuring care quality, safety, dignified end-of-life), relatives-oriented needs (supporting families, protecting mental health), and self-oriented needs (legal protection, professional well-being, administrative efficiency). This core balancing process is shaped by three contextual factors: (1) evolving nursing home environments with cognitively impaired residents and regulatory complexity; (2) insufficient knowledge of the trusted person system among families and professionals; and (3) family burden during end-of-life phases, including guilt and death-related taboos. Under the influence of these contextual factors, professionals’ balancing efforts manifest through heterogeneous practices in informing families about designation and varied approaches to involving trusted persons in decision-making and care.

Conclusion

From the perspective of healthcare professionals, effective trusted person involvement would be facilitated by early education before admission. Our findings suggest organizational and educational interventions may improve trusted person collaboration, though research engaging trusted persons and patients directly is needed to validate these professional perspectives and develop appropriate interventions.

Supplementary Information

The online version contains supplementary material available at https://doi.org/10.1186/s12913-026-14978-1.

Background

France faces growing challenges with an aging population and neurodegenerative disorders [17]. When patients become unable to communicate with medical teams, their values and preferences risk going unrepresented. France’s legal framework addresses this through the trusted person system (“personne de confiance”), introduced by the 2002 Kouchner Law. This system reflects a broader legislative shift from paternalistic to autonomist care, emphasizing patient self-determination [10, 5].

Under French law (Code de la Santé Publique, CSP art. L1111-4, L1111-6), any cognitively capable adult may appoint a trusted person by co-signing a designation document. The designated person is typically a family member, close friend, or physician. When patients can no longer express their wishes - particularly in advanced disease or end-of-life situations - the trusted person communicates their preferences to healthcare professionals. For life-limiting decisions requiring collegial procedures, the trusted person’s testimony prevails over other relatives testimonies, though not over advance directives. The trusted person may also accompany patients during medical procedures, attend appointments, and assist in decision-making. They act as spokesperson, not substitute decision-maker. For instance, when a patient in a prolonged coma has a family in disagreement over care decisions, the designated trusted person’s testimony legally prevails.

This study focuses specifically on French nursing homes (Établissements d’Hébergement pour Personnes Âgées Dépendantes, EHPAD), which provide accommodation, daily care, and medical supervision for older adults unable to live independently. This setting merits particular attention for three reasons. First, France’s nursing home population has aged significantly. The expansion of home-based care means that individuals now enter nursing homes later, in frailer condition, and with more advanced cognitive impairments [20]. This creates unique challenges for trusted person designation and collaboration. Second, French law mandates that nursing home directors offer every newly admitted individual the opportunity to designate a trusted person. Directors must provide written information and oral explanations suited to each person’s level of understanding (Code de l’Action Sociale et des Familles, CASF art. D. 311-0-4 al. 1). Trusted person designation is therefore systematically introduced at admission, creating implementation dynamics distinct from other healthcare settings. Third, this setting has received comparatively little research attention. The existing literature on trusted persons for older patients has predominantly focused on hospital settings [13, 11, 25], leaving the nursing home context underexplored. Yet this context presents distinctive features that warrant dedicated investigation: residents frequently present with cognitive impairments, care relationships are long-term, and family dynamics are shaped by prolonged cohabitation between staff, residents, and relatives.

Despite these distinctive features, relatively little research examines trusted persons in French nursing homes. A recent scoping review identified only 34 peer-reviewed papers on trusted persons for older French patients, with most collecting data in hospitals [13]. Only two studies include nursing home data. Degois et al. [11] reviewed medical files of 72 deceased nursing home residents. They found low documentation rates − 27.6% for trusted person designation and 23.2% for advance directives - and recommended systematic designation procedures. Pavageau et al. [25] interviewed 13 patients, including four in nursing homes, and 12 general practitioners. Both groups recognized the importance of trusted persons. However, they noted insufficient planning in ambulatory care. In settings where designation was mandatory, the trusted person role was sometimes trivialized or confused with that of an emergency contact.

Neither study directly addresses how nursing home professionals perceive, collaborate with, and navigate challenges associated with trusted persons. Degois et al. [11] examined medical records without exploring professional perspectives. Pavageau et al. [25] focused primarily on physicians’ and patients’ views, with limited representation of nursing home professionals. No study has systematically examined the perspectives of those working in or with nursing homes - directors, psychologists, coordinating physicians, nurses, and other staff - regarding trusted person collaboration.

Before presenting our study’s aim, one conceptual clarification is necessary. In France, trusted persons are typically family members - adult children or spouses - though friends or physicians may also be designated [1, 2]. Professionals’ interactions with trusted persons are therefore inseparable from broader family dynamics, since the trusted person role is embedded within pre-existing family relationships. At the same time, trusted person designation formalizes a specific legal role as the patient’s spokesperson. Our study examines family dynamics as essential context, while maintaining its analytical focus on how professionals perceive and integrate this formalized role.

Aim of the study

This study explores how professionals working in or with French nursing homes perceive and collaborate with trusted persons. Given that French law mandates offering trusted person designation upon nursing home admission, we examine how this system functions in practice from professionals’ perspectives. Specifically, we investigate what contextual factors - including family dynamics, organizational constraints, and professional needs - shape this collaboration, and what challenges professionals encounter in implementing the trusted person system.

Methods

Design

We used the grounded theory methodology to shape our research design [9]. This methodology is appropriate when little is known about the phenomenon of interest [7].

Study population and recruitment

We first performed interviews with two health professionals whose profiles were relevant to the study: a director of a nursing home (E1) and a psychologist working in a mobile palliative care intervention unit (E2). The decision of enrolling these two participants first was made based on their knowledge, experience, and complementary perspectives.

E2 provides an external, well-informed perspective as a mobile palliative care team member (see Table 1). In France, these interdisciplinary teams (physicians, nurses, psychologists) support care teams in implementing palliative protocols and provide family support during advanced illness, without replacing direct care provision. E2 has thus encountered trusted persons across diverse contexts including nursing homes, hospitals, and terminal illness situations. E1, a public nursing home director with prior nursing experience, provides complementary organizational and clinical perspectives, interacting with patients, families, and professionals in end-of-life and daily care situations.

Table 1.

Characteristics of the participants

ID	Gender	Age	Position	Years of experience related to nursing homes	Type of employment structure	Size of the structure (Number of beds)	Interview duration (in minutes)
E1	F	31–35	Nursing home director (former nurse)	4	Public nursing home	240	80
E2	F	31–35	Clinical psychologist	5	Mobile palliative care intervention unit attached to a Public hospital facility	1 400	73
E3	F	46–50	Director of a Senior Residence. Former nursing home director (2009–2016). Former executive assistant in a nursing home (1998–2009)	18	Senior residence. Formerly in a private nursing home.	81	57
E4	F	46–50	Director of a Senior Residence. Former nursing home director (2012–2017). Former executive assistant in a nursing home (2000–2012)	17	Senior residence. Formerly in a private nursing home.	81	42
E5	F	51–55	Nurse manager*	4	Public nursing home	240	26
E6	F	31–35	Clinical psychologist	8	Public nursing home	240	43
E7	F	56–60	Coordinating physician* (6 nursing homes)	11	Public nursing home	480	63
E8	F	51–55	Nursing home director	4	Public nursing home	83	30
E9	H	46–50	Nursing home director	13	Public nursing home	75	71
E10	F	26–30	Clinical psychologist	3	Private nursing home	2 structures: 124 et 54	34
E11	F	46–50	Clinical psychologist	23	Public nursing home	121	71
E12	F	31–35	Psychomotrician	0,5	Public nursing home	120	58
E13	F	51–55	Animator	15	Public nursing home	32	38
E14	F	21–25	Psychomotrician	1	Private nursing home	80	31

* Coordinating physicians (“médecins coordonnateurs”) are medical doctors responsible for overseeing medical care and leading medical decision-making in nursing homes. Nurse managers (“cadres de santé”) are senior nurses who coordinate care teams and bridge clinical and administrative functions. Both roles involve direct participation in treatment decisions and family communication regarding trusted persons

Our sampling strategy reflects trusted person collaboration’s organizational and relational dimensions. Beyond medical decision-making, the system encompasses admission, family communication, daily care coordination, and long-term relationship management. We purposively sampled professionals with diverse roles: directors (system implementation, family relationships), psychologists (end-of-life support), coordinating physicians (medical decisions), nurse managers (care team coordination), and other staff (daily resident/family interactions). This captured the system’s multifaceted functioning beyond isolated medical decisions.

Following grounded theory’s theoretical sampling principles, we iteratively recruited participants based on emerging analytical needs (e.g., heterogeneous information practices, family burden). Our final sample included coordinating physicians, nurse managers, psychologists, psychometricians, and directors from facilities of varying sizes and experience levels, ensuring theoretical depth while maintaining focus on professionals involved in trusted person interactions (see Table 1).

We identified participants through professional networks, direct contact with nursing home facilities, and snowball sampling. Potential participants received an email invitation explaining the study’s purpose, procedures, and voluntary nature. Those who expressed interest received detailed written information about the study, including their rights to withdraw at any time and the measures in place to protect confidentiality. Written informed consent was obtained electronically from all participants prior to their interviews. The first author (MFR), who conducted all interviews, obtained consent from each participant.

Data collection

Based on the grounded theory methodology, we conducted data collection iteratively [9], between February 2021 and September 2022. We conducted interviews by telephone or videoconference. All interviews were performed by the first author (MFR). Early data analysis helped us identify the direction for further data gathering. The interviews sought to gain insights into participants’ thoughts and perceptions regarding the patients’ trusted persons. We developed a semi-structured guide with open-ended questions to guide the interviews. An English version of the guide is provided as a supplementary file. Interviews lasted between 26 and 80 min. Interviews were audio-recorded with the consent of all participants.

Data analysis

Both authors performed grounded theory analysis [9], beginning immediately after the first interview. This concurrent collection and analysis [8] enabled constant comparison of emerging codes and concepts, guiding theoretical sampling. For instance, early interviews revealing heterogeneous information practices prompted refined probing of family awareness in subsequent interviews.

Audio recordings were transcribed verbatim by a professional transcription service (Authôt), bound by confidentiality agreements. All identifying information (names, specific facility details) was removed during transcription. We assigned a numerical code to each participant (E1–E14) used in all subsequent analysis and reporting. Audio files were securely stored on password-protected, encrypted servers and permanently deleted following verification of transcript accuracy. Transcripts and all analytical files were stored on encrypted, password-protected servers accessible only to the research team. No identifiable data appear in any publications or presentations.

The qualitative data analysis was computer-assisted, using NVivo (Release 1.5). After multiple readings of the transcripts, we began with open coding, labeling segments of raw data to generate an initial set of codes grounded closely in participants’ language and experiences. We then proceeded to axial coding, examining relationships between codes - including causes, consequences, contextual conditions, and strategies - and organizing them into categories and subcategories. Finally, through selective coding, we identified a core category: ‘maintaining a balance between patient-, relatives-, and self-oriented needs.’ This core category emerged as the central social process that integrates all other categories and explains how professionals navigate their interactions with trusted persons across varied contexts.

After 9 interviews, theoretical saturation was achieved, meaning no new concepts, categories, or relationships emerged from the data [9, 16]. This was confirmed through 5 additional interviews in which we deliberately sought variation in professional roles and practice settings. While these participants shared rich perspectives regarding trusted persons, no new theoretical insights emerged, confirming saturation. Both authors independently analyzed the data to ensure analytical rigor [15], and the coding structure was discussed and refined during three debriefing sessions.

Research ethics

The study was conducted in accordance with internationally recognized ethical principles for research involving human participants, notably the principles of the World Medical Association’s Declaration of Helsinki, applied proportionately to the context of non-interventional social science research.

The research project, including the preliminary interview guide, consent form, and procedures for ensuring confidentiality and data de-identification, was submitted to and approved by the Data Protection Officer (DPO) of the Fondation Nationale des Sciences Politiques (FNSP), in compliance with the General Data Protection Regulation (GDPR).

Under French law, formal ethics approval by an Institutional Review Board is not required for non-medical social science research. The Jardé law [19], codified in the Public Health Code, applies exclusively to medical and biomedical research and does not cover social science research involving professional participants [4, 6].

Results

Conceptual framework

In grounded theory, analysis moves from individual codes to broader categories, culminating in the identification of a core category. The core category is the central concept that integrates and accounts for all others. Categories designate the main empirical domains identified through analysis. Each category groups related codes and captures a coherent aspect of the phenomenon. Dimensions refer to the distinct sub-aspects that together constitute the internal structure of a given category.

Before presenting our conceptual framework, it is important to note that throughout interviews, professionals discussed both designated trusted persons’ specific roles and broader family dynamics. Since trusted persons are typically family members, their role - though formally defined - operates within complex family systems and relationships.

The core category (‘Maintaining a balance between patient-, relatives-, and self-oriented needs”) represents the central social process identified through grounded theory analysis. It comprises three sub-dimensions: patient-oriented needs (care quality, safety, and dignified end-of-life); relatives-oriented needs (family support and mental health protection); and self-oriented needs (encompassing four dimensions: legal and procedural protection, psychological safety, administrative efficiency, and institutional protection). This core balancing process is shaped by three contextual factors: the evolution of the nursing home work environment (Category 1), insufficient knowledge of the trusted person system among families and professionals (Category 2), and the burden borne by families and trusted persons during end-of-life phases (Category 3; comprising four dimensions: emotional, informational, relational, and cultural). Under the influence of these contextual factors, the core process manifests in heterogeneous designation practices (Category 4) and differentiated involvement approaches (Category 5). Arrows in Fig. 1 indicate directional relationships: contextual factors shape the core process, which in turn manifests in professional practices.

Fig. 1.

Grounded theory model of professionals’ trusted person collaboration in French nursing homes: balancing competing needs under contextual constraints

Core category: “Maintaining a balance between patient-, relatives- and self-oriented needs”

We identify three type of needs that healthcare professionals in French nursing homes strive to balance: patient-oriented, relatives-oriented, and self-oriented needs.

Patient-related needs

Healthcare professionals actively center patient welfare in their interactions with trusted persons, deploying five concrete strategies to do so. First, professionals follow a consultation hierarchy to preserve the resident’s voice. As E5 described: “We check whether anything was recorded in the file at admission. Then we ask the resident directly when they are able to respond. We only turn to families when we can no longer retrieve the resident’s own wishes.” Accessing this voice requires deliberate effort: E7 described systematically seeking one-on-one time with residents, noting that “the accompanying person seems very caring and involved, yet once I am alone with the resident, they tell me: ‘That is not who I want - I want this other person.‘” This reveals a gap between visible caregiving presence and the resident’s actual preference - a gap that remains invisible without direct, private consultation.

Second, when family disagreements or overreach arise, professionals exercise clinical authority to protect patient welfare. As E1 explained, “the GP makes the decision, in agreement with the EHPAD’s coordinating physician” and can “override the veto of relatives or the trusted person” to ensure patient safety.

Third, professionals proactively initiate end-of-life discussions before crises arise. As E6 reflected: “At the time of admission, we can at least raise the questions that will matter later - broach them from the very beginning, and continue revisiting them throughout the stay.”

Fourth, professionals actively use information transmitted by trusted persons to personalize care. Trusted persons serve as continuous sources of patient knowledge for daily care. E13 illustrated how knowledge of residents’ routines enables concrete adaptations: “If someone is not accustomed to group interactions, knowing that means we don’t force them into group activities.” E14 described how this extends to therapeutic practice: “Some residents love to dance - for gait rehabilitation, I will use music (…) that is the kind of information I can use in my sessions. Without that information, my field of action shrinks.”

Fifth, when trusted persons lack sufficient knowledge of the resident’s wishes, professionals engage in active information-gathering and triangulation. As E14 described: “We ask the relatives as much as possible. We consolidate what converges, what points in the same direction”. This triangulation addresses a risk identified by E12: that “the designated trusted person may not truly carry the older person’s actual wishes about how they want to be cared for.”

Addressing end-of-life issues at admission presents significant challenges. Patients recognize nursing homes as their final residence, creating emotional difficulty. As E6 explained, “it’s not easy to bring up this kind of subject when you enter an EHPAD, because they’re already struggling.” This tension between the need to plan for end-of-life care and patients’ emotional vulnerability at admission sometimes leads professionals to adopt avoidance strategies, postponing these difficult conversations despite their importance.

Relatives-related needs

Healthcare professionals recognize that supporting families is essential to quality care. Beyond meeting patient needs directly, professionals endeavor to protect family members’ mental health and well-being, particularly through careful communication of medical information. This support becomes especially critical in nursing homes, where families face the emotional burden of witnessing their loved one’s decline over extended periods.

Professionals understand that families need preparation and guidance to cope with progressive deterioration, particularly in cases of neurodegenerative disease. Without adequate preparation, families may experience shock, denial, or guilt as their loved one’s condition worsens. As E7 explained, effective family support requires proactive communication: “In neurodegenerative diseases, we have to make sure that the family understands what the disease is, its impact, the evolution it could have, try to explain to them that at some point, your loved one will no longer recognize you and to get themselves prepared.”

Self-oriented needs

Healthcare professionals must balance patient and relatives needs with their own professional well-being and efficacy when interacting with trusted persons. These self-oriented needs encompass four interconnected dimensions, each essential to maintaining sustainable professional practice in the emotionally demanding context of nursing home care.

Dimension 1: Legal and procedural protection when families disagree.

The trusted person system provides crucial legal protection when families hold conflicting opinions about care decisions. Before the 2002 law establishing trusted persons, professionals lacked clear authority to manage disagreeing relatives and could find themselves caught in impossible situations. As E9 explained, previously “we had no support” to tell families “you have to come to an agreement.” The trusted person designation fundamentally changed this dynamic by establishing clear decision-making authority - when family members disagree, the trusted person’s testimony legally prevails.

This framework shields professionals from being personally blamed for difficult decisions. Rather than appearing to favor one family member over another, they can refer to the designated trusted person’s legally recognized authority. E3, reflecting on her years as a nursing home director, described how this protection operates in practice: “The caregiver is asked to refer to the designated trusted person. Other children can come and stir things up afterwards - the caregiver has followed the procedure, they are covered.” Before this legal framework existed, she recalled, professionals had no institutional basis for navigating competing family demands: “When three children each came with their own opinion, we had no answer - we couldn’t say: it’s not our role to arbitrate.” The trusted person designation resolves this by providing a single, legally recognized interlocutor. As E3 observed, this also carries a practical dimension: “We call the trusted person - it’s up to them to relay the information and for the family to hold a meeting. We do what the trusted person tells us. That alone reduces our workload considerably.”

Dimension 2: Psychological safety and emotional equilibrium

This legal protection directly supports professionals’ psychological well-being. Working with families during end-of-life situations is inherently emotionally demanding, particularly when families struggle with acceptance or grief. E14 described a challenging case where a trusted person “didn’t accept the fact that the parent was violent, and passed the blame on to us.” When professionals attempted to “keep the dialogue going” but communication repeatedly “dies out”, this created profound professional stress. In this case, the situation deteriorated to the point “we had reached the end of our possibilities”, ultimately resulting in contract termination.

Clear frameworks like the trusted person system help professionals navigate difficult conversations and conflicting family demands without bearing excessive emotional burden or fearing personal liability. As E13 reflected on her personal motivation for understanding this system: “I know that I would want my wishes to be respected. If one day, unfortunately, I can no longer express them, I would really want to have a trusted person who would ensure they are respected. For me, it’s very important.” This personal perspective reveals how professionals recognize the trusted person system not only as administrative protection but as fundamental ethical safeguard.

Dimension 3: Administrative efficiency and time management

Beyond psychological and legal protection, the trusted person system enhances operational efficiency - an important concern given chronic staff shortages in nursing homes. When functioning well, the system provides a single point of contact for medical decisions and family communication, reducing time spent managing multiple family members with divergent views. E14 explained this efficiency imperative: “We try to have one interlocutor maximum for each resident, as much as possible, because residents have many medical appointments. Regularly, [families] want to know if it went well, what the doctor said. We try to have at most a single interlocutor.”

E14 further elaborated on why this efficiency matters: “We sometimes have families who don’t get along very well, so information doesn’t pass very well. Or the resident forgets to pass on information. We try to have a single interlocutor for each resident, as much as possible.” The trusted person can serve as this centralized communication point, streamlining information flow and reducing the cognitive load on already-stretched staff. This efficiency allows professionals to focus their limited time on direct patient care rather than family negotiations, and expedites decision-making in urgent medical situations where delays could compromise patient care.

Dimension 4: Institutional protection and legal defensibility

Finally, the trusted person system provides institutional protection by ensuring decisions are properly documented and legally defensible. By consulting the designated trusted person and following collegial procedures for major decisions, professionals create clear audit trails that demonstrate respect for patient autonomy and legal compliance. This mitigates institutional litigation risk while ensuring that end-of-life care decisions reflect patient values as conveyed through their chosen representative.

E13’s experience illustrates why this documentation matters. Reflecting on the importance of respecting trusted persons’ authority, she noted: “It’s important to have a trusted person and that professionals respect this trusted person and respect the wishes they must convey.” When this system functions properly, it protects both patients’ autonomy and professionals’ practice, creating a framework where difficult decisions can be made with confidence that proper procedures have been followed and patient preferences honored.

Category 1: “Evolution of the work environment within the French nursing homes”

French nursing homes’ evolving work environment shapes trusted person interactions through two interconnected transformations: changing resident profiles and increasing organizational complexity.

First, the resident population has aged significantly. The stay-at-home movement encourages older individuals to remain in their homes as long as possible, resulting in nursing home admission occurring only when independence becomes untenable. Consequently, residents arrive older and with more advanced cognitive impairments than in previous decades. This demographic shift creates a paradox for trusted person designation: the system requires competent patients to designate someone, yet many residents no longer possess the cognitive capacity to do so at admission. As E8 explained: “No, the older person isn’t always able to do it [fill in the trusted person designation form]. We have a lot of people with cognitive disorders. People are choosing to stay at home as long as possible. […] And so, when they arrive, they are no longer in a position to designate a trusted person themselves. The difficulty lies in applying the text strictly.”

Second, organizational complexity has intensified. Staff shortages and time constraints coincide with increasingly intricate legal regulations, straining nursing home operations. Smaller facilities, lacking resources to navigate this complexity, have been absorbed by larger corporate entities. These pressures diminish opportunities for relationship-building between professionals and families. E4 reflected on this evolution: “With all the laws that were put in place, all the rules we had to apply […] it was so difficult for small retirement homes that didn’t have big enough shoulders, they were acquired by big companies. In my case, based on my experience, we didn’t have enough time to have this link with our residents and families and to discuss all this. It’s a good thing that this system was introduced, because it enabled us to respect, or ensure respect for, the last wishes of certain residents.”

These transformations - cognitively impaired residents and constrained organizational capacity - create the contextual reality within which professionals must implement the trusted person system, explaining many of the challenges and adaptations described in subsequent categories.

Category 2: “Insufficient knowledge of the trusted person system among relatives and some healthcare professionals”

A significant contextual factor is the knowledge gap about the trusted person system among both families and healthcare professionals. Despite incorporation into routine practice, extensive education remains needed. As E6 noted, “there’s a real lack of understanding, both on the part of families and residents, but also sometimes among colleagues, of how to make the distinction and have this notion of a trusted person.”

This knowledge gap contributes to designation challenges. Patients often designate someone close without considering suitability for discussing difficult matters. Moreover, the legal requirement to designate only one trusted person can create family conflicts, particularly among siblings. The designated individual may be perceived as the preferred or most loved family member, exacerbating rivalries. E2 described siblings quarreling “because one of the children was chosen, because you can only designate one trusted person.” This illustrates how the trusted person designation can inadvertently create tensions that did not exist previously.

Category 3: “Professionals’ perceptions of the burden borne by families and trusted persons during end-of-life phases”

Category 3 captures how professionals - through repeated, direct interaction with families in their daily practice - perceive and interpret the burden these individuals bear during end-of-life phases. The professionals whose observations anchor this category - a mobile palliative care psychologist with formal bereavement follow-up responsibilities (E2), a coordinating physician conducting systematic family meetings (E7), a nurse manager serving as operational contact during clinical crises (E5), a clinical psychologist who conducts individual interviews with both residents and their families (E6) and former EHPAD director with sustained admission and end-of-life experience (E4) - have repeated exposure to the dynamics described. This burden, as professionals perceive it, manifests across four interconnected dimensions: emotional, informational, relational, and cultural.

Dimension 1: Emotional dimension

Professionals observe that trusted persons carry the psychological weight of life-and-death decisions, a burden that intensifies when patients’ wishes were never clearly articulated beforehand. E2 described the retrospective guilt that she witnesses in families following the patient’s death: “When the person dies, we know that there may be guilt in one direction or the other: ‘I was obstinate, maybe she was suffering. And I let her live in this impossible state.’ Or, conversely: ‘I said I didn’t want this and so, more quickly, I’m responsible for her death.‘” This observation reveals a structural mechanism underlying the emotional burden: trusted persons are placed in a no-win position in which any decision - whether toward prolongation or limitation of treatment - can be retrospectively framed as a failure.

Dimension 2: Informational dimension

Professionals observe that trusted persons are called upon to express patient preferences precisely when families are least prepared to do so - at moments of acute clinical deterioration. E6 reported a direct family account from an end-of-life situation: “We were at the end-of-life stage with a family that was very present, very close, and for whom this phase of their mother’s life was incredibly hard to experience. When we asked them ‘what do we do?‘, they were very clear: ‘What you are asking us now is something you should have asked us at admission. Because right now, it is already too painful for us.‘” E5 described the systemic pattern underlying this experience: “It is really often only when there is deterioration - when we start asking ourselves ‘do we hospitalise, do we provide comfort care, do we go palliative?’ - that is usually when we start looking for who the trusted person is.” These observations reveal a compounding dynamic: information gathering is not merely deferred, but deferred to the moment of maximum emotional overload. Together, these observations describes a paradox that shapes professional practice: the moment at which families are most needed as decision-making resources is the moment at which they are least equipped to fulfil that role.

Dimension 3: Relational dimension

Professionals regularly observe two distinct relational dynamics: intra-family tensions and substitution phenomena in which families project their own reasoning rather than transmitting the patient’s expressed wishes. E7 described the substitution pattern as systematic rather than exceptional: “They sometimes forget - and I see this very often - they forget to put forward what the person themselves would have thought. They transfer their own way of reasoning onto their loved one.” This phenomenon reflects a collapse of the representational distinction between “what did the patient want” and “what do I want for the patient”.

Cognitive decline may accelerate this collapse. E7 also described this dynamic: “Some children - because of their parent’s cognitive impairment - become overbearing. I do not judge them, they have good intentions, but they want to control everything around their parent. If I do not protect these older residents from this kind of overreach, who will?” This account positions professionals not as passive observers of family dynamics but as active mediators who simultaneously validate family concern and redirect it toward the patient’s perspective.

The task is made more complex by intra-family conflicts. E7 described a concrete case during an ethical consultation: “There was one daughter, very close to her mother, for whom this situation was deeply painful - she opposed palliative care and wanted hospitalization. The other two children wanted palliative care for their mother. We organised a meeting so that the entire family could hear the care team’s account - what the team had been able to gather from what their mother had expressed.”

Across these observations, professionals emerge as continuous relational managers. They navigate not only the trusted person’s perspective but the layered dynamics of the family system in which the trusted person role is embedded.

Dimension 4: Cultural dimension

Professionals observe that death-related taboos prevent many families from having end-of-life conversations during the patient’s lifetime, creating the informational void that generates the emotional and relational burden described above. E4 identified a generational structure to this taboo: “It is still taboo, I feel, even though this law has been around for a long time. Our generation talks about it - I talk to my children about death, about what I want. But with my own parents, it is still taboo.” This observation suggests that the populations currently entering nursing homes belong to a cohort for whom death-related discussion remains normatively foreclosed.

E2, whose daily work involves gathering patient preferences at end-of-life across multiple care settings, described the consequences of this avoidance with particular precision. Families rarely engage in prior conversations about end-of-life wishes: “It is very rare to hear people say: ‘We discussed it together - we know what each of us wants or does not want at the end of life.’ I would say it concerns about 1% of the population.”

This near-universal silence shapes designation in a specific way: rather than choosing someone able to transmit their wishes, patients tend to designate the person they love most - who is, paradoxically, the one they are least likely to have had such conversations with. As E2 observed: “They will not tell that person what they want, what they do not want, speak about their death, their end of life. They will designate the person closest to them - who may not be the person they can talk to about difficult things.”

The designation requirement itself can reinforce this avoidance. E2 noted that formalizing end-of-life wishes is experienced by many patients as a kind of countdown: the act of designating a trusted person, like that of writing advance directives, signals proximity to death in a way that can feel unbearable. “It is impossible to talk about this, because it means talking about one’s death, one’s end of life - and for some people, that is intolerable.”

E4 observed that this avoidance extends to the designation process itself: “When we ask at admission whether they have designated a trusted person, they have not thought about it beforehand.”

Together, these observations reveal a structural paradox: the cultural prohibition on death-related discussion ensures that the trusted person designation - precisely the moment intended to open this conversation - arrives too late, when emotional defences are highest and the reflective space required is most compressed.

Together, these four dimensions constitute an interconnected architecture of burden: cultural avoidance creates an informational void, the informational void generates emotional uncertainty at the time of crisis, emotional uncertainty produces relational conflict, and all of these dynamics fall within professionals’ field of intervention - shaping both their approaches to trusted person designation (Category 4) and their strategies for involving trusted persons in care decisions (Category 5).

Category 4: “Heterogeneous behaviours regarding the proposal of designation of the trusted person”

Category 4 concerns the designation phase: how professionals introduce, explain, and facilitate the formal appointment of a trusted person, primarily at or around the time of admission. Despite clear legal requirements (CASF art. D. 311-0-4), nursing homes exhibit striking implementation heterogeneity in this phase, ranging from rigorous adherence to pragmatic adaptations prioritizing patient welfare. This heterogeneity is documented through two convergent sources: comparison across participants working in facilities of varying size, ownership, and organizational culture; and direct comparative observations by participants with multi-facility experience. Notably, E10 simultaneously practices in two facilities within the same private group and described markedly different designation processes between them: a psychologist-led, structured approach in one and an administrative process with acknowledged gaps in the other. E11 (clinical psychologist, 23 years of experience) provides additional evidence of this heterogeneity. Having participated in a departmental palliative care training session, she described exchanging with practitioners from other facilities about the challenges of implementing the designation process. She also documented a significant internal evolution within her own facility: prior to 2017, no systematic designation process existed, and it was only following this training session - and through her facility’s ethics committee - that a structured approach was established. This illustrates that heterogeneity operates not only across facilities at a given point in time, but also within facilities over time.

Information provision practices vary considerably. Many families remain unaware of the trusted person concept and are surprised when a loved one designates someone for this role. Healthcare professionals must explain the distinction between referent persons (administrative tasks) and trusted persons (health decisions), particularly important given primary caregiver overload. However, information provision is often inconsistent. Designation forms are frequently included in admission paperwork, risking the process becoming merely administrative. E2 emphasized this is “not just another administrative form” but “something that needs to be thought through, accompanied and explained,” not just “‘Hop! Sign.‘” Without proper explanation, trusted persons may misunderstand their authority: “‘Do this, do that… because I’m the trusted person.’ But it doesn’t work that way at all.”

The legal requirement to designate a single trusted person creates emotional challenges. Older patients frequently experience guilt about choosing one family member over others, leading to tensions. To address this, some professionals suggest creative solutions. As E7 explained: “The older person feels guilty about designating one person over another. So I try to say: ‘Some people can appoint a family referent for all money matters. And then this one as trusted person, for care.’ Or I tell them, ‘But if you want, you can change it every year, there’s nothing stopping you from doing so.’ Older people are more bothered by the fact that, in the law, the law always says THE trusted person. There’s only one.” Despite complexity, trusted person designation remains more common than advance directives because it is “a lot easier” (E11), though some residents complete both after observing other residents’ situations.

Beyond information provision, professionals navigate pragmatic tensions between legal compliance and patient welfare. Central to their approach is protecting vulnerable patients from exploitation. Staff vigilantly evaluate potential trusted persons, and when isolated patients lack family or social support, social workers establish protective measures, often resulting in judicial curator appointments who serve as trusted persons despite lacking close patient relationships.

More controversially, professionals sometimes exercise discretion regarding legal requirements when residents have severe cognitive impairments at admission. Recognizing that patients may be incapable of signing designation forms, staff may acknowledge the primary caregiver as trusted person even without formal documentation - or accept forms signed by primary caregivers on behalf of fatigued or cognitively impaired patients, effectively appointing themselves. E8, a nursing home director, explained: “When the person can no longer express themselves, we trust the person who hasn’t necessarily been formally designated - when there’s no conflict with the rest of the family, we consider the trusted person to be the primary caregiver who has always taken decisions. There isn’t necessarily a document signed by the person.” She further noted that even when a signature was obtainable, its legal value was questionable: “Even if we managed to collect the signature, we’d know very well it wouldn’t mean much, given that the person’s condition doesn’t allow them to understand what they’re doing.” Such practices reflect staff commitment to ensuring continuity of communication. They also illustrate a tension between legal requirements (designation by a competent adult) and the organizational reality of late-stage admissions.

Category 5: “Differentiated behaviours regarding the solicitation of the trusted person”

Category 5 concerns the involvement phase: how professionals engage already-designated trusted persons in ongoing care processes, decision-making, and communication throughout the resident’s stay. Healthcare professionals exhibit variability in how they engage trusted persons in care processes, ranging from proactive partnership to problematic exclusion of capable patients. This differentiation encompasses both the nature of involvement (medical decisions versus broader support) and the quality of collaboration (effective communication versus breakdown).

Proactive engagement and partnership represents one end of the spectrum. Some physicians initiate early end-of-life discussions, as E5 described: a physician “receives families on admission or a few days later” and asks “‘What were your mom’s wishes, your dad’s wishes if one day, they were to deteriorate?‘” These conversations, though not always documented, establish foundations for future decision-making.

Beyond medical decisions, professionals recognize trusted persons as multifaceted partners. They serve as relational links between residents, families, and teams, participate actively in personalized care plans aligned with ANESM’s Framework Recommendation 3 on “Bientraitance” (National Agency for the Evaluation and Quality of Social and Medical-Social Institutions and Services) and French law no. 2002-2, and provide input on treatments while advocating for resident preferences. As E14 explained, the trusted person is both “a link we can have with the resident” and “a player in the patient’s care” who “can give their opinion” regarding end-of-life treatments to ensure patient wishes are honored. Trusted persons also handle non-medical matters including day-to-day support, shopping assistance, and financial coordination. When discussing admission costs and out-of-pocket expenses, managers consider “the trusted person is our interlocutor,” though remain “dependent on the agreement and validation of other family members” (E9).

However, collaboration faces multiple challenges. Most problematically, some professionals inappropriately bypass capable patients, consulting trusted persons directly instead. E2 described, in a hospital setting, a feeding tube decision where “we don’t ask the patient if she agrees or not, they’ll ask the trusted person” and “the patient, she finds herself in there” - a clear deviation from legal requirements mandating patient consultation when capable.

Communication difficulties compound these challenges. When trusted persons encounter difficult medical information under conditions of geographical distance or emotional distress, dialogue may break down despite professionals’ efforts. The consequences can extend well beyond the immediate exchange. E11 described a case in which a trusted person, geographically distant and reached by telephone, was confronted without adequate preparation with the term “amputation”. She was not ready to hear it, found the communication deeply shocking, and was unable to give her response at the time. The situation subsequently escalated: the trusted person wrote a formal letter of complaint to the nursing home director, raising the possibility of legal proceedings. The director was required to meet with her personally before the situation could be calmed; no proceedings ultimately followed. The episode generated an institutional response: the facility’s ethics and good practice committee was mobilized to reflect on how professionals communicate sensitive clinical information to families in distress. As E11 noted, the trusted person’s grievance was “really about the information” - specifically, the clinical terminology used and the manner in which it was conveyed by telephone. This case illustrates that communication breakdown does not only create immediate relational difficulty: it can trigger formal institutional pressure, expose the care team to complaint procedures, and require significant managerial intervention to restore the relationship.

Structural factors further complicate collaboration. The trusted person is typically the primary caregiver who must redefine their role post-admission and “reinvest in a family sphere, friendships and activities” (E9). Without support, this transition can be “experienced as a rivalry between the caregiver and the institution.” Some trusted persons reduce involvement post-admission, with E1 noting they “usually take a break,” while E12 expressed surprise when they are “not as close in terms of visits, or the interest” as expected. Geographic distance further complicates sustained collaboration, particularly when clinical decisions must be communicated urgently - as illustrated by the case described above (amputation, E11).

Discussion

This study examined how French nursing home professionals perceive and collaborate with trusted persons. Through grounded theory, we identified a core balancing process (patient-, relatives-, and self-oriented needs) shaped by three contextual factors (evolving environments, knowledge gaps, family burden), manifesting in heterogeneous designation practices and differentiated involvement approaches. These findings underscore needs for education and enhanced communication strategies.

The centrality of family dynamics in understanding trusted person collaboration

Our findings demonstrate that professionals cannot effectively collaborate with trusted persons without navigating the broader family context. In nursing homes, trusted persons are predominantly family members, and their ability to fulfill their legal role is linked to family relationships, dynamics, and communication patterns. Professionals must navigate family conflicts, varying involvement levels, and complex emotional dynamics surrounding aging and end-of-life care. Understanding professionals’ perspectives on trusted persons thus necessarily encompasses family engagement, burden, and communication - interconnected aspects of the same collaborative process.

Designation patterns and trusted person characteristics

Trusted person designation appears relatively common in nursing homes, facilitated by inclusion of designation forms in admission files and caregiver presence at admission, while designation rates in hospitals range from 15 to 74% depending on context [3, 24, 28, 32, 34]. Primary caregivers are frequently designated. These findings align with and extend existing research on trusted person characteristics. Like prior studies [13, 30], we found that proximity and availability drive designation choices.

Caregivers of older dependent individuals experience physical, emotional, and social consequences [21], with some maintaining intensive involvement post-admission while others reduce engagement [27]. François, [14] identified needs during admission including rest, control, support, relationship preservation, and identity reinforcement - dynamics our participants observed as guilt, role confusion, and psychological burden. The heterogeneous information provision practices we identified may compound these challenges as caregivers simultaneously navigate role redefinition and inconsistent guidance about formal responsibilities. Some designated trusted persons become less present post-admission, potentially reflecting caregiver exhaustion [21, 27].

Trusted person involvement and role expansion

Professionals generally understand trusted persons’ legal responsibilities: accompanying patients, conveying wishes when incapacitated, and assisting decisions. Some actively involve relatives in decision-making and personalized care plans.

While existing research has documented trusted persons’ roles in medical decision-making [22, 25], our study reveals challenges specific to the nursing home’s long-term care context. Geographic distance - illustrated by E11’s account of a trusted person who ‘wasn’t ready to hear’ terms like ‘amputation’ by phone - and evolving family dynamics over extended stays create barriers to sustained engagement that professionals must navigate over months or years. These findings suggest that trusted person collaboration in nursing homes requires approaches adapted to this specific setting and care trajectory.

As shown in previous literature, our study indicates that family taboos in France surrounding end-of-life discussions hinder collaboration. Older individuals find it difficult to confront mortality and imagine autonomy loss, leading to avoidance [23]. This explains why designating a trusted person (requiring only naming someone) was more common than completing advance directives (requiring explicit end-of-life contemplation) in our study. Families’ denial about possible death sometimes leads to physical distancing [23], potentially explaining reduced trusted person presence post-admission.

Beyond legal responsibilities, our study shows, similarly to previous literature, that trusted persons play multifaceted roles including daily living assistance, administrative tasks, and family-staff mediation [2, 12, 25, 29– 31].

Information provision and educational implications

Our findings on information provision heterogeneity extend previous research documenting similar inconsistencies in hospital settings [18, 26, 33]. The cognitive impairments at admission identified in our study (Category 1) create a critical window problem - patients often lack capacity to understand designation implications precisely when the decision must be made.

Information provision about trusted person rights and responsibilities varies considerably across nursing homes. Some provide information once at admission; others hold subsequent appointments discussing end-of-life issues in depth. This variability aligns with hospital settings where patients are not systematically informed about trusted person tasks [18, 16, 33, 11] found that end-of-life issues, despite being an everyday reality in nursing homes, are rarely discussed - a gap our study suggests is largely attributable to psychological barriers faced by older patients and their families.

Based on professionals’ observations, educational interventions appear promising for improving designation and collaboration. Participants emphasized that cognitive impairments and emotional barriers make trusted person designation difficult once patients enter nursing homes. From their perspective, earlier education - before admission and health crises - would facilitate thoughtful designation and better role preparation.

However, important caveats exist. First, these recommendations reflect professionals’ perspectives on what would facilitate their work - not trusted persons’ or patients’ views on educational needs, formats, or barriers. Second, intervention effectiveness requires empirical evaluation. Third, education alone may insufficiently address systemic barriers including time constraints, staff shortages, and emotional difficulties inherent in end-of-life planning. Future research should directly engage trusted persons and patients to understand their needs, and pilot interventions should be rigorously evaluated. Educational programs should be developed in partnership with trusted persons and patients, not solely from professional perspectives.

Limitations

This study has several important limitations that should be acknowledged. First, and most significantly, our sample was composed primarily of professionals occupying strategic coordination and management roles within or alongside nursing homes - specifically directors, psychologists, and nurse managers - with limited representation of prescribing physicians (one coordinating physician) and limited nursing representation (one nurse manager). While these participants provided valuable insights into the organizational, relational, and coordination dimensions of trusted person collaboration - dimensions that are essential to understanding how this system functions in nursing homes - the perspectives of clinicians directly involved in bedside medical decision-making and daily care delivery remain underrepresented in our sample.

The inclusion of one nurse manager provides some insight into nursing perspectives, but nurse managers occupy supervisory and administrative roles that differ from the direct care roles of staff nurses who interact with patients, families, and trusted persons on a daily basis. Similarly, our single coordinating physician provides medical perspective, but coordinating physicians in French nursing homes typically have oversight and coordination responsibilities. Staff nurses, who provide continuous daily care and often serve as the primary point of contact between patients, families, and trusted persons, and the prescribing physicians who make final medical decisions in consultation with trusted persons, may have different experiences and perspectives regarding practical implementation, communication challenges, and the impact of trusted person designation on clinical decision-making at the bedside.

Our findings therefore primarily reflect the organizational, psychosocial, and coordination perspectives on trusted person collaboration rather than frontline clinical perspectives. This is not to diminish the validity or importance of these perspectives - understanding how the system functions at the organizational and coordination levels is essential - but rather to acknowledge that a complete picture would require more substantial representation of nurses in direct care roles and prescribing physicians. Future research should specifically include staff nurses and prescribing physicians to understand how trusted person designation influences day-to-day clinical decisions, bedside interactions, and care delivery practices.

Second, our study focused exclusively on professionals’ perspectives. While understanding how healthcare professionals perceive and navigate the trusted person system is essential for improving organizational practices and policies, the experiences, needs, and challenges of trusted persons themselves, as well as patients who designate them, remain unexplored in our study. The perspectives of these key stakeholders would provide complementary insights into barriers to designation, the actual experience of fulfilling the trusted person role, and the extent to which the system effectively supports patient autonomy from their viewpoint. Research directly engaging trusted persons and patients is needed to develop a comprehensive understanding of this system and to validate or challenge the assumptions and observations made by professionals in our study.

Third, our sample was geographically diverse within France but remained within a single national legal and cultural context. The trusted person system as implemented in France may differ from surrogate decision-making systems in other countries, limiting the transferability of our findings to international contexts. However, the core tensions we identified - balancing patient autonomy, family involvement, and professional responsibilities - may resonate across different healthcare systems, even if the specific legal frameworks differ.

Finally, while grounded theory methodology allowed us to construct a conceptual framework grounded in participants’ experiences, our framework requires validation through additional research. Future studies could test whether the core process of “maintaining a balance between patient-, relatives-, and self-oriented needs” operates similarly in other nursing home contexts, other healthcare settings, or with different professional groups.

Conclusion

This study examined how professionals working in or with French nursing homes perceive and collaborate with trusted persons. Through grounded theory analysis of 14 professional interviews, we identified that trusted person collaboration involves continuous balancing of competing stakeholder needs (patient care and dignity, family support, professional well-being) within complex organizational and relational contexts shaped by evolving nursing home environments, knowledge gaps, and family burden.

Our findings make important contributions to the limited nursing home literature. First, we provide the first systematic analysis of how French nursing home professionals navigate the trusted person system in this specific setting, revealing implementation heterogeneity (from rigorous adherence to pragmatic adaptation) and contextual challenges shaped by the organizational, relational, and cognitive specificities of long-term residential care. Second, our conceptual framework of balancing competing needs under contextual constraints offers a generalizable lens for understanding professional behavior in complex care coordination scenarios. Third, we demonstrate that trusted person collaboration in nursing homes is fundamentally embedded within ongoing family relationships and long-term care contexts.

These findings suggest practical directions for improvement. Professionals identify needs for earlier designation discussions (before admission), systematic education for families and professionals, organizational support (adequate staffing, protected time for sensitive conversations, clear protocols), and standardized information provision to reduce practice variability. However, as our study captures exclusively professional perspectives with limited frontline clinical representation, these recommendations require validation and refinement through research directly engaging trusted persons, patients, staff nurses, and prescribing physicians.

Supplementary Information

Below is the link to the electronic supplementary material.

Supplementary Material 1 ^{(109.2KB, pdf)}

Abbreviations

ANESM

‘Agence nationale de l’évaluation et de la qualité des établissements et services sociaux et médico-sociaux’

CSP

“Code de la santé publique”

CASF

“Code de l’action sociale et des familles”

EHPAD

“Établissement d’hébergement pour personnes âgées dépendantes”. Medical establishment where people, generally aged 60 or over, who need daily care and assistance are accommodated. These people reside there on a part-time or full-time, temporary or permanent basis

Author contributions

MFR wrote the manuscript. MFR and CK developed the study design. MFR performed the interviews and sent them for transcription. MFR and CK performed the analyses of the interviews. MFR supervised the project.

Funding

This research was funded by a public grant overseen by the French National Research Agency (ANR) as part of the “Investissements d’Avenir” program LIEPP (ANR-11-LABX-0091, ANR-11-IDEX- 0005 − 02) and the Université de Paris IdEx (ANR-18-IDEX-0001).

Data availability

The datasets generated and/or analysed during the current study are not publicly available due to the format of the data not allowing for a complete anonymisation. However, data are available from the corresponding author on reasonable request.

Declarations

Ethics approval and consent to participate

The study was conducted in accordance with internationally recognized ethical standards for research involving human participants, including the ethical principles of respect for persons, voluntary participation, and protection of confidentiality as articulated in the Declaration of Helsinki and adapted to social science research. All participants were provided with written information about the study, and all gave written consent to participate in the interviews.

Consent for publication

The participants consented to the publication of de-identified material collected from the interviews. The research protocol, interview guide, consent forms, and data protection procedures were reviewed and approved by the Data Protection Officer (DPO) of the Fondation Nationale des Sciences Politiques (FNSP), in compliance with the General Data Protection Regulation (GDPR). French regulations do not require formal ethics approval by an IRB for social science research projects. In 2012, the Jardé law ([19] concerning research involving human subjects) mandated in France that all research involving human subjects must be reviewed by a Committee for the Protection of Persons. However, this law, transcribed in the Health Code, applies only to medical and biomedical research and parliamentary debates never mention social science research involving human subjects [4, 6].

Competing interests

The authors declare no competing interests.