Conceptual framework
The data analysis revealed a conceptual framework that emphasizes the challenges healthcare professionals face in reconciling three competing needs: their own, those of the patient, and those of the patient’s family. The core strategy identified, "maintaining a balance between patient-, family-, and self-oriented needs," was consistently employed throughout the analysis.
This quest for balance is influenced by various constraints that differ based on the practice setting and context. These constraints include: the evolving work environment within French nursing homes (category 1); the lack of information about the trusted person system among some professionals (category 2); and the emotional burden experienced by the family during the patient’s end-of-life phase (category 3). Additionally, the pursuit of balance manifests in varied approaches to designating and involving the trusted person (categories 4 and 5).
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, family-oriented, and self-oriented needs.
Patient-related needs
Healthcare professionals strive to meet patient needs, including ensuring the care and safety of nursing home residents. When interacting with trusted persons, their primary objective remains fulfilling the patient's needs. So much so, that if they are unable to obtain clear answers from the trusted person, they can turn to other interlocutors to ensure quality care for the patient.
"And in any case, we're there to guarantee the patient's care. Really, when we feel that it's not possible for the family and there's no solution, we have the GP. It's the GP who makes the decision, in agreement with the EHPAD's coordinating doctor, because doctors can make decisions for the safety of their residents, and override the veto of relatives or the trusted person." (E1, Nursing home director, 31–35 years)
Addressing end-of-life issues, such as advance directives and the role of a trusted person, can be a burdensome task when a patient enters a nursing home. Ensuring the patient's well-being at this stage often leads to an avoidance strategy by the medical team. They may avoid discussing end-of-life matters or specifying the roles of advance directives and trusted persons.
"It's not easy to bring up this kind of subject when you enter an EHPAD, because they're already struggling. When you go into an EHPAD, you know that it's also your last home and that, as a general rule, that's where you'll end your days. So it's already a difficult step to take, and it's hard to dwell too long on these questions when you first enter. We only ask the question, what we're required to do, is the question of the funeral, whether or not they already have a funeral contract, or would they like to know which funeral operator to call, etc." (E8, Nursing home director, 51–55 years)
Healthcare professionals also endeavour to ensure a dignified end of life.
"And we, as an institution, need to know that we can turn to someone to make sure your wishes are respected." (E3, director of a Senior Residence, former nursing home director and executive assistant, 46–50 years)
Relatives-related needs
Healthcare professionals endeavour to meet the needs of patients' families, particularly by protecting the mental health of relatives through the communication of medical information and details from medical records.
"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, that your loved one will no longer recognize you and to get themselves prepared. " (E7, coordinating physician, 56–60 years).
Self-oriented needs
Healthcare professionals aim to fulfill their own needs when interacting with trusted persons or relatives of patients. They seek to maintain psychological safety, minimize administrative time, expedite decision-making for appropriate treatments, and efficiently deliver care. Additionally, they strive to mitigate the risk of litigation by avoiding treatments that may later be deemed inappropriate by family members.
"Because before the 2002 law, when the three children got in the way, it could turn into a family affair, and we didn't have the answer: 'No, but you do what I tell you'... 'No, no, you do what my sister says'. And in fact, we had no support to say: 'We're not here to decide. You have to come to an agreement', but when they can't, it's hard. I think that covers a healthcare provider, me, honestly." (E3, director of a Senior Residence, former nursing home director and executive assistant, 46–50 years)
Category 1: “Evolution of the work environment within the French nursing homes”
A critical contextual element influencing how healthcare professionals address the needs of patients, relatives, and themselves in interactions with trusted persons is their work environment. Interviews indicate that the work environment in French nursing homes has evolved significantly due to various factors. One major factor is the increased aging of incoming residents, driven by the stay-at-home movement, which results in residents being older and having more advanced cognitive impairments at the time of admission.
“No, the elderly 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.” (E8, Nursing home director, 51–55 years)
There is also a notable increase in the complexity within nursing homes. This complexity arises from a shortage of staff and limited time available for care, coupled with more intricate legal regulations. These factors contribute to a greater distance in the relationships between healthcare professionals and the families of residents.
“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.” (E4, director of a Senior Residence, former nursing home director and executive assistant, 46–50 years)
Category 2: “Insufficient knowledge of the trusted person system among relatives and certain healthcare professionals”
Another contextual element influencing how healthcare professionals address the needs of patients, relatives, and themselves in interactions with trusted persons is the significant gap in the awareness and understanding of the trusted person system among relatives and healthcare professionals. Despite its growing importance and incorporation into routine practices, there remains a need for extensive education on the subject. The lack of awareness extends not only to families and residents but also to healthcare colleagues, who often struggle to distinguish and grasp the concept of a trusted person.
“I think 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.” (E6, clinical psychologist, 31–35 years)
Interviews highlight several issues related to the designation of a trusted person in end-of-life care. There is often a lack of communication and understanding about the role of a trusted person, leading patients to designate someone close to them, which may not always be the most suitable choice for discussing difficult or complex matters. This designation can inadvertently cause conflicts within the family, particularly among siblings, as only one trusted person can be chosen. This situation can create new conflicts and tensions that did not exist previously, as the designated trusted person may be seen as the preferred or most loved individual, exacerbating sibling rivalries and misunderstandings.
“Sometimes, I've seen siblings quarrel because one of the children was chosen, because you can only designate one trusted person, otherwise it's impossible. In practice, it's this trusted person who creates conflicts that didn't exist before. ‘Pay your dues.’ – ‘Well, she loves you the most’.” (E2, clinical psychologist, 31–35)
Category 3: “Burden felt by the family during the end of the patient's life”
Interviews reveal that the burden experienced by families during the terminal phase of a patient's life is a crucial contextual factor in understanding healthcare professionals' behavior related to trusted persons. Families often struggle with feelings of guilt and responsibility associated with the designated trusted person. This sense of guilt is exacerbated by the fact that the trusted person is frequently unaware of the elderly patient's wishes. Healthcare professionals have observed that family taboos surrounding end-of-life discussions hinder effective collaboration with the trusted person. These taboos make it challenging for families to engage in in-depth conversations about death and end-of-life issues, leading to a lack of clarity regarding the patient's wishes. Consequently, healthcare professionals, recognizing this issue, often emphasize the importance of the trusted person transcribing -as much as possible - the patient's wishes and values rather than their own preferences and beliefs.
“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.’ That's why we don't want their opinion, to protect them.” (E2, clinical psychologist, 31–35)
Category 4: “Heterogeneous behaviours regarding the proposal of designation of the trusted person”
According to French health law, the director of a nursing home or any formally designated person must inform residents and their families about the option to designate a trusted person, providing both an information notice and oral explanations (CASF art. D. 311-0-4). Despite this legal requirement, interviews reveal heterogeneous practices in making patients and families aware of the rights, obligations, and responsibilities of the trusted person upon the resident's admission to a nursing home.
Many families remain unaware of the concept of a trusted person and are often surprised or confused upon learning that a loved one has designated someone else for this role. This misunderstanding necessitates that healthcare professionals clearly explain the distinct roles of referent persons and trusted persons, particularly emphasizing the difference between handling administrative tasks and making health-related decisions. For instance, the primary informal caregiver often experiences significant overload, facing numerous physical, emotional, and logistical challenges. Professionals recommend a division of labour among family members to alleviate the caregiving burden. Moreover, elderly patients frequently experience guilt about designating only one trusted person, as mandated by law, leading to family tensions. To address this issue, some healthcare professionals suggest appointing different family members for specific roles, such as managing financial matters or medical decisions, or rotating the trusted person role annually. This approach can relieve pressure and clarify responsibilities, as some family members may feel more comfortable or capable in certain roles.
“The elderly 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.” (E7, coordinating physician, 56–60 years)
Various healthcare professionals, including doctors, psychologists and nurses, are involved in educating families and capable residents about the role of the trusted person. However, inconsistencies exist in how this information is conveyed. There is a risk that the trusted person designation is treated merely as an administrative formality upon admission, leading to the designated individual signing the form without fully understanding their role. This can result in potential misunderstandings about their responsibilities. In some nursing homes, there can be a strong emphasis on the mandatory inclusion of trusted person documentation in the admission files. However, there can be confusion and difficulty in presenting this information effectively. To address this, coordination between management and medical staff is sometimes employed to explain the concept of a trusted person beyond just fulfilling administrative requirements. It is crucial that this process is managed thoughtfully and explained clearly to ensure that the trusted person comprehends and can accurately represent the resident's wishes.
“Indeed, you might think that this is just another administrative form, whereas it's something that needs to be thought through, accompanied and explained, and not just passed on: ‘Hop! Sign.’ We'll give the paper, Mrs X will fill it in (the future resident) and the child will sign, but without understanding what it means to be a trusted person. And it often happens that, on paper, they are indeed a trusted person, but they don't find out what their loved one wants or doesn't want. And in the end, they think they have a bit of all the power and they say, ‘Do this, do that or take that away because I'm the trusted person.’ But it doesn't work that way at all.” (E2, clinical psychologist, 31–35)
Nursing home staff note that appointing a trusted person is more common and simpler than writing advance directives, with fewer residents opting for the latter. Some residents choose to do both, often influenced by their observations of other residents' experiences, leading them to decide later on.
“A trusted person is a lot easier than writing advance directives. We have far fewer advance directives than designations of trusted person. After that, some people do both. But it's not necessarily upon admission. It can happen later, depending on what they've seen with other residents. They say to themselves: "I wouldn't like it that way. In the end, I'll write".” (E11, clinical psychologist, 46–50 years)
The interviews offer insight into the varied practices and challenges encountered by nursing home staff in overseeing the appointment of a trusted person. Professionals adopt a pragmatic approach to ensure the welfare of patients, navigating complex scenarios to safeguard residents' best interests. Central to their efforts is addressing concerns surrounding vulnerability and potential abuse. Staff exercise vigilance in evaluating individuals considered for trusted person designation, prioritizing the prevention of exploitation. In cases where isolated and vulnerable patients lack familial or social support networks, social workers are enlisted to establish protective measures, often resulting in judicial appointments of curators. While these appointed individuals may not have close relationships with the patients, they serve as trusted persons, facilitating decision-making processes on their behalf.
Moreover, nursing home staff may exercise discretion in adhering to legal requirements, especially when residents suffer from severe cognitive impairments upon admission, rendering them incapable of signing designation paperwork. In such instances, the main caregiver, recognized for consistently advocating for the resident, may be acknowledged as the trusted person, even without formal documentation. Interviews reveal instances where admission papers, including the trusted person designation form, are signed by the primary caregiver, typically the individual accompanying the elderly patient upon admission. This is particularly evident when the patient is fatigued or has already lost cognitive abilities, prompting the caregiver to appoint themselves as the trusted person by completing the necessary documents.
These practices underscore staff's commitment to identifying individuals capable of providing reliable and timely patient information, even if it involves behavior that may not fully comply with legal regulations.
“I had a conversation with an EHPAD director in one of our facilities, and I was astonished. He said to me: ‘Finally, we need someone to talk to. There's a problem, we need to call someone, we need a name. So sometimes, even if the resident isn't fully capable, we'll put a name to it.’ And I said to myself, in the end, maybe that's something we can find sometimes, because the EHPAD doesn't want to find itself in distress.” (E10, clinical psychologist, 26–30 years)
Category 5: “Differentiated behaviours regarding the solicitation of the trusted person”
The engagement of the trusted person in medical decision-making processes reveals varied approaches among healthcare professionals. Some professionals actively involve relatives in decision-making processes. For instance, they initiate discussions about directives, the role of the trusted person, and the patient's wishes, often during admission or when the patient's condition deteriorates. While these discussions may not always be documented, they play a crucial role in addressing the patient's preferences and ensuring they are respected.
“I work with a doctor who is a very strict observer of directives, the trusted person and the family's wishes. Often, he receives families on admission or a few days later, and he addresses the issue and tells them, "What were your mom's wishes, your dad's wishes if one day, they were to deteriorate?" So that's addressed. It's not necessarily written down. Rather, it's discussed and he'll raise it with the families at the time when there's a deterioration in general condition.” (E5, health executive, 51–55)
Moreover, some nursing home staff perceive that the trusted person acts as a liaison between the resident, medical staff, and family, fostering trust and communication. Trusted persons are crucial in forming a connection with the resident, ensuring their needs and wishes are understood and respected.
Additionally, the trusted person actively participates in the personalized care plan, particularly in end-of-life care. The personalized project serves as a coordination tool aimed at addressing the long-term needs and expectations of the individual receiving care. Considering these needs and expectations within the personalized project aligns directly with Anesm's Framework Recommendation 3 on "Bientraitance" and adheres to French law no. 2002-2, enacted on January 2, 2002, which focuses on the renovation of social and medico-social action. Trusted persons provide input on medical treatments, advocating for the resident’s preferences and ensuring these are honoured in the care process. Thus, they serve both as a relational link and an active participant in the resident’s healthcare.
“It's a person in whom the resident can place their trust if they have the cognitive capacity to do so, and who acts as a link with the teams, the medical staff and sometimes the family. For me, it's really a link we can have with the resident. And on the other hand, it's a person who plays a concrete role in the care plan and accompaniment in life, at the end of life, and therefore intervenes in medical care, who can give their opinion if ever there are more or less heavy treatments in the accompaniment of the person's end of life, what the person would have wished for at the end of their life. It's both a link and a player in the patient's care.” (E14, psychometrician, 21–25 years)
The trusted person plays a multifaceted role within nursing home teams, providing day-to-day support and facilitating various aspects of care and administration within the nursing home setting beyond the scope of medical care. The trusted person can be expected by the nursing home staff to assist with tasks such as shopping. Additionally, they often serve as the primary point of contact for nursing home management regarding financial matters, particularly regarding the remaining out-of-pocket expenses for families.
“When a person is admitted to a nursing home, the question arises as to how they are going to meet the costs. Today, this question is increasingly being asked in relation to the remaining out-of-pocket expenses for families. Very often, we, as managers, the trusted person is our interlocutor, but we are also dependent on the agreement and validation of other family members.” (E9, nursing home director, 46–50 years)
Conversely, other professionals may opt to replace the patient with the trusted person in decision-making processes, even if the patient is able to communicate their consent. This practice deviates from legal recommendations, as decisions are made directly by the trusted person without consulting the capable patient. Notably, this behavior is reported during the patient's admission to the hospital.
“This person can no longer swallow [...] we put a pouch in her stomach, a small tube, and we feed her directly to avoid false routes. And we don't ask the patient if she agrees or not, they'll ask the trusted person who will say yes or no and then the patient, she finds herself in there.” (E2, clinical psychologist, 31–35 years)
Communication with a trusted person can present significant challenges, particularly in complex cases where the trusted individual struggles to accept the patient’s illness. This situation can render the communication process especially challenging and sensitive. Despite the care team’s efforts to hold multiple meetings to maintain open communication and sustain a therapeutic relationship, a complete breakdown in communication may occur. This breakdown can result in either a temporary pause or, in some instances, the termination of the care agreement.
“We had one resident who was aggressive and violent. The trusted person was his daughter. It wasn't going well at all because this person didn't accept the fact that the parent was violent, and passed the blame on to us […] We really tried to keep the dialogue going. That was the hardest part, keeping the dialogue going and continuing to create a therapeutic link even though there were disagreements. That was the hardest part. Either the dialogue continues or, unfortunately, it dies out. In such cases, we either come back to it later and start again, or unfortunately sometimes it can lead to a breach of contract.” (E14, psychometrician, 21–25 years)
It is often assumed that the trusted person is someone closely connected, usually a direct family member or someone from the patient’s close social circle. This may be the primary caregiver who accompanied the resident when they were admitted to the nursing home.
“In some families, the trusted person is the eldest or the person who lives nearby and has been the main caregiver.” (E9, nursing home director, 46–50)
Nursing home staff have observed that the primary caregiver is frequently designated as the trusted person. They indicate that trusted persons require specific support during the patient’s integration into the nursing home. This transition compels the trusted person to redefine their role and reengage with other aspects of their life.
“In many cases, the main caregiver has built their daily life around supporting their spouse or parent. When the parent is admitted to an EHPAD, they have to build something else, reinvest in a family sphere, friendships and activities. It's a new learning curve. If it's not accompanied, especially when the person moves into an EHPAD, it can be experienced as a rivalry between the caregiver and the institution.” (E9, nursing home director, 46–50)
The integration of a trusted person within a nursing home setting can be complicated when this individual reduces their involvement after the patient's admission, leading to fewer visits compared to other relatives. Sometimes, the designated trusted person is less involved or shows less interest than expected, which can be surprising. Additionally, in cases involving complex life stories, the trusted person may not belong to the immediate family or close friends, further complicating their role and involvement.
“Once the elderly person has been admitted to the Ehpad... usually the trusted person takes a break. It's really the caregiver who takes a step back.” (E1, nursing home director, 31–35 years)
“ But what I often see is one of the relatives who visits the person in the institution the most, but this is not systematic. Sometimes, in fact, I'm a little surprised when I find out who the trusted person is, and I may find that they're not as close in terms of the number of visits, or the interest the relative has in the person, as I thought. It can surprise me a little.” (E12, psychometrician, 31–35 years)
When the trusted person is not geographically close to the nursing home, communication can be difficult. For example, in emergency situations, information gathering and requests for advice on treatment may be made by telephone. The context of telephone communication does not always allow for the smooth transmission of information and recognition of the trusted person's emotions. This can be detrimental to good patient care.
“The resident was no longer able to give his opinion and the lesions he had were in his hand. I don't know what the medical problem was, but in any case, the tendon was apparent and so he had already seen a surgeon, the surgeon said that it had to be amputated, that there was no other solution. […] There was no other solution. And so it's very shocking for the trusted person. […] What's more, she wasn't on site, she was far away so (inaudible). She couldn't come and see the resident, so in relation to what everyone was telling her (inaudible) his image. So, he wasn't an amputee. He died around September. […] She wrote to the director. She was very shocked by the way it was done. […]The term used. […] They stuck to medical terms. And that was that. And then it comes out like amputation and she wasn't ready to hear those kinds of words.” (E11, clinical psychologist, 46–50 years)