Physicians and relatives facing end-of-life decisions in intensive care: ethical insights from a comparison of French and American models

Abstract

Background

Decisions to limit life-sustaining treatment (LST) in intensive care frequently generate ethical tensions between physicians and patients’ relatives. Although France and the United States both emphasize respect for patient autonomy, their decisional frameworks allocate different roles to physicians and surrogates, raising questions about how these models shape ethical practice. The aim of this study was to compare French and American approaches to LST decision-making to identify shared ethical difficulties in physician–relative interactions beyond framework differences.

Methods

Qualitative comparative analysis combining a review of decisional frameworks with semi-structured interviews of intensivists and ethicists in France and the United States. Data were analyzed thematically.

Results

Three recurrent ethical issues emerged across both contexts. First, while patient autonomy remains a central normative reference, its implementation is limited by the scarcity, ambiguity, and contextual inadequacy of advance directives, as well as uncertainties in interpreting patients’ wishes through relatives. Second, irrespective of formal decision-making authority, physicians report a strong sense of moral responsibility grounded in medical expertise and professional integrity, often associated with moral distress when asked to provide treatments perceived as non-beneficial. Third, conflicts with relatives commonly arise from value-based disagreements regarding proportionality of care and perceived medical futility.

Conclusion

Despite contrasting legal models – physician-led decision-making in France and surrogate-led decision-making in the United States – ethical tensions surrounding LST decisions appear largely similar. These findings suggest that procedural frameworks alone are insufficient to address the moral complexity of end-of-life decision-making, underscoring the need to strengthen ethical deliberation, and recognition of shared moral responsibility between physicians and relatives.

Supplementary Information

The online version contains supplementary material available at 10.1186/s12910-026-01504-5.

Background

Limitation of life-sustaining treatment (LST) – i.e., withholding or withdrawing life-sustaining therapy – is very common worldwide [1]. In Western countries, the proportion of deaths in intensive care units (ICUs) following decisions to limit LST has been rising in recent years [2], and now stands at around 80–90% [1]. In France, on the one hand, and in the United States of America (U.S.), on the other, the decision-making process guiding LST limitation decisions has been progressively shaped by governmental policies, recommendations from professional societies, legislation and case law [3]. In both countries, these decision-making processes have been designed to promote the principle of respect for patient autonomy [4, 5] and to encourage a more shared decision-making process [6, 7]. However, for patients without decision-making capacity, the question of “who should decide?” – i.e., physicians or family members – remains at the heart of the debate [8, 9].

In recent years, many of the difficulties between physicians and family members related to this central issue have emerged from family requests to continue treatments considered “potentially inappropriate” by medical teams [10, 11]. In 2015, a multisociety statement, including the Society of Critical Care Medicine (SCCM, United States) and the European Society for Intensive Care Medicine (ESICM, Europe), provided recommendations to prevent and manage intractable disagreements between physicians and family members over the use of LST in ICUs. Both societies emphasized procedural fairness as the most important way to manage intractable disputes [12]. Despite these guidelines, the rise of ethics committees, and the widespread use of ethical consultations [13, 14], intractable physician-family conflicts are still prevalent in France and the U.S [15, 16]., leaving many questions about appropriate roles and responsibilities of each party in the decision-making process.

It is commonly believed that the role of family members differs between the U.S. and France but few studies have compared both the regulatory frameworks and the practical ethical difficulties encountered at the bedside. The aim of this study was therefore to analyze and compare, from an ethical perspective, the decision-making models in U.S. and France, in order to identify not only theoretical differences but also points of convergence in the ethical challenges faced during LST decisions. Ultimately, this comparison seeks to draw lessons that could inform and improve clinical practices in ICU settings.

Methods

This study was carried out in two ways: (1) a descriptive assessment of French and American regulations, legislation, guidelines and recommendations governing LST limitation decisions; and (2) a qualitative analytical assessment of the way in which decision-making processes and policies are implemented in these two countries. Combined, these two parts were designed to try to identify ways of improving practices in both countries.

Study design

Study of regulatory frameworks for LST limitation decision-making processes

The regulations, legislation and recommendations governing LST decisions in France and the U.S. were compared. In the U.S., documentation was compiled on the basis of preliminary interviews with members of The Hastings Center for Bioethics and the Harvard Medical School Center for Bioethics, experts in the field (MZS, RT, JR, ER). In France, regulatory texts have been compiled from the official government website “Légifrance” (www.legifrance.gouv.fr).

Qualitative study

The qualitative study consisted of semi-structured interviews with intensive care physicians, nurses and ethicists in France between March and October 2022 and in the US between September 2023 and June 2024. In France, participants were recruited from four Parisian university hospitals (Assistance Publique – Hôpitaux de Paris). Participating centers were recruited on a voluntary basis after department heads of hospitals in the Paris area were contacted by email and invited to take part in the study. Within each center, volunteer physicians were interviewed, with efforts made to ensure heterogeneity in participants’ profiles (residents, attending physicians, department heads, and both academic and non-academic physicians). In the United States, participants were affiliated with two university hospitals in Boston, MA, part of Mass General Brigham. Participants were also recruited on a voluntary basis and were identified through the ethics committees of each hospital. Thirty-six people were interviewed; their demographic characteristics are presented in Table 1. These interviews lasted between 28 and 58 min.

Table 1.

Demographic characteristics of the participants

Demographic feature	N = 36
Country, n (%)
• France	22 (61.1)
• U.S.	14 (38.9)
Sex, n (%)
• Men	23 (63.9)
• Women	13 (36.1)
Age range, n (%
• 21–30 years	4 (11.1)
• 31–40 years	14 (38.9)
• 41–50 years	10 (27.8)
• 51–60 years	8 (22.2)
Role, n (%)
• Resident	4 (11.1)
• Fellow	10 (27.8)
• Attending physician	15 (41.7)
• Nurse	3 (8.3)
• Ethicist	2 (5.6)
• Other	2 (5.6)
ICU or ethics experience, n (%)
• 0–5 years	4 (11.1)
• 5–10 years	12 (33.3)
• 10–15 years	7 (19.4)
• 15–20 years	6 (16.7)
• > 20 years	7 (19.4)

Interviews were conducted by the investigator (MG), who is a physician in intensive care and a researcher in medical ethics. The interviewer had prior expertise in the ethical and clinical issues surrounding end-of-life decision-making. Participants were informed of the interviewer’s professional background. Although the interviewer shared a clinical background with many participants, care was taken to encourage open discussion and to minimize potential hierarchical influences during the interviews.

Interviews were conducted using an interview guide developed by the research team. The guide explored physicians’ perceptions of the role of family members in decisions to limit LST, including how their views are sought, interpreted, and integrated into the decision-making process. The same interview guide was used in France and in the U.S., with minor adaptations to account for differences in legal and organizational contexts. The interview guide is provided in Supplemental Material (Table S1). Interviews were conducted in each country until thematic saturation was reached, that is, when no new themes emerged from the data.

In France, interviews were conducted in French, audio recorded and then transcribed manually. In the U.S., interviews were conducted in English and annotated manually in writing. French interviews were translated into English for analysis and reporting when necessary. To preserve the accuracy of participants’ meaning, translations were checked by bilingual members of the research team.

The interviews were analyzed using an inductive thematic analysis, allowing for the identification of themes grounded in participants’ accounts [17]. No predefined analytical framework was applied; rather, themes and conceptual categories were developed inductively from the data. For each of the two interview panels, coding was conducted inductively. An initial “open” list of codes was established based on the first four interviews. From this initial list of codes, the most similar codes were merged to limit their number. This allowed key themes and concepts to be identified and a list of codes (“codebook”) to be established [18]. All interviews were then coded using the codes determined in the previous step, with new codes added where necessary. Based on the full dataset, themes and sub-themes were defined for each panel, and points of convergence between the two countries were identified to structure the results. Relevant quotes were selected to document and illustrate each theme. A detailed codebook, including themes, sub-themes, codes, and their definitions, is provided in the supplementary material (Table S2).

Findings are reported in accordance with the Standards for Reporting Qualitative Research (SRQR) recommendations [19, 20].

Results

Comparison of regulatory frameworks for LST limitation decision-making processes

The main conceptual features of both frameworks are summarized in Table 2, with a detailed description provided in the Supplemental Material (Table S3).

Table 2.

Outline of French and American decision-making models

	French model	American model
Type of regulatory framework	Specific law on LST limitation decisions	General legal articles on patient rights, recommendations from academic society, local policies
Patients with decision-making capacity
• Decision maker	Patient	Patient
• Decision responsibility	Patient	Patient
• Ethical principles	Respect for patient autonomy, consent, self-determination	Respect for patient autonomy, consent, self-determination
• Parties involved in the deliberation	Patient and physicians +/- trusted person and family-members according to the patient’s wishes	Patient and physicians +/- surrogate and family-members according to the patient’s wishes
Patients without decision-making capacity
• Ethical principles	Refusal of “unreasonable obstinacy”, respect for the patient’s wishes/principle of respect for patient autonomy (through the trusted person and advance directives)	Refusal of “potentially inappropriate treatments” and futile treatments, respect for the patient’s wishes/principle of respect for patient autonomy (through the surrogate, advance directives or other document such as POLST)
• Decision maker	The physician following a collegial procedure	The surrogate after obtaining recommendations made by the medical team
• Decision responsibility	Physician	Surrogate
• Parties involved in the deliberation	Physicians, trust person, family-members	Physicians, surrogate, family-members
• Management of disagreements and conflicts	Amicable first if possible, Legal action by relatives if necessary	Amicable first if possible, ; Resolving conflict proceedings led within hospital settings, often by ethics committees Legal action by physicians or surrogates if necessary

In France, the decision-making process for LST limitation decisions is defined by the Public Health Code and is based on the “Claeys-Leonetti Law” of February 2, 2016 [21].

In the United States, the process must comply with the “Patient Self-Determination Act” and the “Nondiscrimination on the Basis of Disability in Programs or Activities Receiving Federal Financial Assistance” act [22, 23]. Moreover, although there is no federal law governing LST limitation decisions, guidelines from the “President’s Commission on Bioethics” in 1983 [24] and those of the Hastings Center in 1987 revised in 2013, have been highly influential [25]. Nevertheless, each hospital must establish its own recommendations to guide the decision-making process for limiting LST.

In both contexts, these frameworks are grounded in respect for patient autonomy and the rejection of futile or potentially inappropriate treatments. However, for patients lacking decision-making capacity, the two models differ substantially in how decisional authority is allocated. In France, the Claeys-Leonetti law establishes a physician-led decision-making process based on a mandatory collegial procedure. Relatives and the trusted person are consulted to help ascertain the patient’s wishes but retain an advisory role, while the attending physician ultimately bears responsibility for the decision. In contrast, in the U.S., decision-making authority is primarily vested in a surrogate decision maker, who is expected to decide according to the patient’s previously expressed wishes, values, or best interests, following recommendations made by the medical team.

The French and American regulatory frameworks show a clear conceptual difference in the decision-making process for patients without decision-making capacity. In France, relatives are given an advisory role, whereas in the U.S., they largely have a decisional role as part of a shared decision-making process, particularly if the surrogate has legal standing as a decision maker (official health care agent/proxy or court appointed guardian). French physicians aim to protect and relieve relatives of the potentially heavy responsibility of making decisions, whereas the American model prioritizes the empowerment of relatives in the decision-making process. In France, when no advance directive exists, the best interests of the patient are assessed by professionals, whereas in the U.S., they are assessed by relatives.

In the event of disagreement or conflict surrounding an LST decision, appeal procedures have been established in both countries. If an amicable resolution cannot be reached and the dispute becomes intractable, the intervention of a judge may be sought. In France, it is the relatives who can appeal to the judge to challenge the medical decision whereas in the U.S., it may be the physicians who appeal to the judge to allow them to apply the decision that conflicts with the surrogate’s decision, or can also be the patient’s surrogate decision makers.

Qualitative analysis: identification of “structural elements”

The next step in the study was to take advantage of these different models to identify similar ethical issues that would therefore be inherent in interactions between physicians and relatives over LST limitation decisions.

Three major themes emerged from the thematic analysis, corresponding to recurrent ethical issues encountered at the patient’s bedside, independent of regulatory frameworks. These themes relate to patient autonomy, physicians’ moral responsibility, and value-based deliberation and conflict. Despite differences in regulatory models, these elements were consistently identified across both countries.

Consistent with our analytical approach, which aimed to identify points of convergence in ethical challenges across contexts, we conceptualized these themes as “structural elements” of ethical decision-making in LST limitation. We use this term to refer to conceptual categories that emerged inductively from the data, capturing recurrent ethical tensions across contexts. These elements describe common underlying dimensions that shape ethical decision-making (Fig. 1).

Fig. 1.

Structural elements of ethical decision-making in LST limitation. This figure presents the three structural elements identified through inductive thematic analysis: patient autonomy, physicians’ moral responsibility, and value-based deliberation and conflict. These elements interact within a dynamic deliberative process, highlighting the ethical tensions inherent to LST decision-making across contexts

The quotes related to each sub-themes are compiled in Table 3.

Table 3.

Quotes

	French model	American model
Respect for patient autonomy and the difficulty of making decisions for others
Primacy of the principle of respect for patient autonomy	“If the patient is in full possession of their faculties, for me, it is their opinion that counts. I cannot go against their decision, and it is they who choose for themselves, so that is the best possible scenario.” (Q1)	“Medical paternalism is always the wrong approach. The principle must be that of shared decision-making centered on the patient’s wishes.” (Q2)
Ethical difficulties in implementing the patient’s wishes	“What we want to do is listen to the patient so that they can give us their opinion. And ultimately, let them have the final say. The problem is that there may be some ambiguity in advance directives, as there may be a discrepancy between what the patient may refuse in their advance directives and what they may accept in a given situation.” (Q3)	“Some patients have advance directives or POLST forms. If these documents exist, they must be followed, but they may still be challenged if, for example, they are not appropriate for the situation.” (Q4)
Patient wishes/expectations of family members	“There is a real interest in considering what the patient would have wanted; it is essential, and we cannot ignore it. But we must manage to dispel anything related to the feelings of the patient’s loved ones. And we will never be able to determine from what they say how much of it is what the patient would have wanted and how much is what they are feeling at that moment.” (Q5)	“The wishes expressed by the surrogate or relatives do not necessarily correspond to those of the patient.” (Q6)
Deciding for others	“Loved ones feel like they have to do something. They feel like they have to make a decision. So, it’s up to me to say, no, it’s not up to you to decide. It’s up to us, actually. We’re here for you. And we’ll take responsibility for this decision anyway.” (Q7)	“Who am I to decide for someone else?” (Q8)
Moral responsibility and professional integrity
Moral responsibility	“You have to face problems head on. And facing the problem doesn’t mean shifting the responsibility onto others. That’s what I can’t stand, when some people say that if the family wants it, we’ll go ahead. I don’t think that’s the right way to practice medicine.” (Q9)	“There is no right decision. Relatives are legally responsible for the decision. But we have a responsibility not to torture patients.” (Q10)
Medical and scientific expertise	“The relatives hear the words, but most of them don’t even know what it means. So they say, “Oh, yes, let’s do that: a tracheotomy, dialysis…” But then I think it’s up to us to decide, in a somewhat paternalistic way, but at the same time, that’s the expertise we have in this area. It’s part of the expertise we can offer.” (Q11)	“Culturally and from a regulatory standpoint, physicians make proposals and recommendations, and patients or their loved ones make the decisions. But loved ones do not have the medical expertise to make these decisions. It’s the same thing when you take your car to the garage to be repaired.” (Q12)
Practice “good” medicine	“Sometimes, yes, frankly, I find it difficult to deal with situations where I am asked to perform horribly painful procedures…it goes against my ethics, in terms of medicine and my beliefs.” (Q13)	“If the request of the relatives goes against the medical team’s recommendation, there are several different situations: if the requested treatment or procedure is dangerous, contraindicated, or futile (i.e., not indicated given the severity of the patient’s condition), the medical team will not perform it. If it is indicated but considered inappropriate, in a “gray area,” the role of families in the decision is much more important.” (Q14)
Moral distress	“Obviously, all of this has a huge impact on doctors. It’s extremely traumatic. We know many intensive care specialists, particularly those working in neurological ICUs, who are leaving the field for this reason, so they don’t have to bear the full brunt of it.” (Q15)	“We have a responsibility to the patient. In cases of disagreement, we sometimes feel compelled to act against our principles.” (Q16)
Personal values and risk of conflict
The limits of debate: the prohibition of futility and the risk of conflict	“We listen to the family’s point of view. But sometimes, despite lengthy negotiations with the family, we may have to take a very firm stance and refuse certain requests because they are completely unreasonable. Relatives may request organ transplants or ECMO, procedures that are sometimes “off limits” from a therapeutic standpoint, and we deliberately take a firm stance when requests are completely unreasonable.” (Q17)	“If it is medically “futile,” families or health care proxies do not decide that it is futile. Physicians convey this assessment to them, and then it is a matter of agreeing on what to do next. In all cases, the idea is that the relatives must validate the decision, and if they disagree, or simply do not express agreement, the ethics committee is called upon, then the court if necessary.” (Q18)
The importance of value-centered debate	“It takes a lot of work to identify the expectations and values of the person on the other side. The mediation team or ethics committee is useful in identifying everyone’s expectations and values, which is important. There may be several objectives that are somewhat incompatible with each other, and these must be managed.” (Q19)	“Conflicts are rare. However, serious debates with families about the decision to be made occur in perhaps 10% of cases. In the vast majority of cases, an agreement is reached through discussion.” (Q20)

Respect for patient autonomy and the difficulty of making decisions for others

This theme reflects not only the central role of patient autonomy but also the difficulties in translating this principle into practice when patients are unable to express their wishes. The principle of respect for patient autonomy was consistently identified as a central normative reference by participants in both countries (Table 3: Q1, Q2). Nevertheless, when it came to its practical implementation, the difficulties seemed significant. The infrequent use of tools designed to promote respect for patient autonomy (trusted persons and advance directives in France; previously designated surrogates and advance directives in the U.S.) reduced the possibilities for respecting the patient’s wishes. In both countries, very low use of these tools was reported, making it difficult to implement a systematic process for respecting patient wishes.

From an ethical standpoint, the difficulty seemed also to lie in how to take into account the patient’s wishes, whether they were expressed on a form (advance directives, POLST or other) or relayed by the relatives (Table 3: Q3, Q4). The professionals interviewed reported ethical difficulties in enforcing the patient’s wishes. Firstly, in cases where a written document was available (e.g., advance directives), they reported questioning the actual value and applicability to the current situation of wishes expressed in a context and at a time that were potentially very different from those of hospitalization and the pathology in question. Secondly, in the absence of a written document, the question of how to differentiate between the wishes that the patient might have expressed and the wishes of the relatives themselves was often at the heart of the moral difficulties faced by professionals: are relatives speaking for themselves or for the patient? Thus, professionals reported a major ethical dilemma linked to the almost inevitable task of interpreting and extrapolating the patient’s words or writings, at the risk of making a decision, on the part of physicians or relatives, that might not be perfectly in line with what the patient would actually have wanted (Table 3: Q5, Q6).

Finally, whether it be relatives or physicians, the question of the legitimacy of deciding for others was raised. More than the responsibility for the decision defined by the decision-making model, it was the question of each person’s legitimacy to decide for others and to recognize the other’s legitimacy to decide for the patient that was at the heart of interactions between physicians and relatives. Sometimes, certain professionals might question their own legitimacy in making decisions in this context, given their lack of knowledge of the patient’s wishes (“who am I to decide for others?”). But it was above all the question of recognizing the legitimacy of others to decide for the patient that was highlighted and that shaped the difficulties in interactions between physicians and relatives (“who are you to decide for the patient?”) (Table 3: Q7, Q8).

Moral responsibility and professional integrity

This theme captures how physicians experience decision-making as a moral commitment, shaped by their clinical expertise and sense of professional responsibility. Beyond the regulatory responsibility for the decision, which is borne by relatives or physicians depending on the decision-making model, professionals in both countries reported feeling a strong moral responsibility for the final decision and for what happens to the patient. Even when advance directives existed, physicians, whether French or American, did not shirk this moral responsibility and sometimes pointed out the need for a certain amount of courage in the decisions taken to provide the best possible care for patients, if necessary, by not strictly adhering to advance directives that appeared medically inappropriate (Table 3: Q9, Q10). Physicians in these situations demonstrated their medical expertise in rendering prognosis along with their ethical commitment to the patient to ‘first, do no harm’.

Similarly, in France and the U.S., two factors corroborated the moral responsibility felt by physicians to provide the best possible care to patients. Firstly, the moral responsibility for the decision was expressed in the name of the medical and scientific expertise of physicians. Regardless of who has regulatory responsibility for the decision, physicians all claimed to have the medical knowledge that enables them to make or propose the solution that will provide the best care for the patient, thus making them morally responsible for that decision (Table 3: Q11, Q12).

Secondly, decisions must meet a standard of professional integrity, i.e., they must comply with professional standards that define the rules of “good” medical practice. These standards are used by intensive care physicians to define the framework of “good medicine” that could provide the best care for patients [26] (Table 3: Q13, Q14). Beyond scientific expertise, professional integrity encompasses the ethical legitimacy of medical judgments and the commitment of physicians to these decisions.

Finally, while physicians claimed a moral responsibility for the decision, “moral distress”, defined as knowing the right thing to do, but being prevented from doing so [27, 28], associated with the decision was often reported. In both countries, this moral distress linked to the decision was an expression of suffering: in France because physicians bore the regulatory and moral responsibility for decisions that often led to the death of the patient, and sought to relieve loved ones of this burden; in the U.S., a moral distress felt by relatives who have to make decisions, as well as by physicians who cannot accept being mere executors of the decisions made by relatives (Table 3: Q15, Q16). However, moral distress was also recognized as part of the role of physicians: this suffering reflected their moral commitment to the difficult decisions they had to make for their patients.

Personal values and risk of conflict

This theme highlights how ethical deliberation is grounded in values and how differing perspectives among stakeholders may lead to tensions or intractable conflict. Indeed, it was the notions of personal values and of risk of conflict that seemed to emerge as the last “structural element” of ethical issues during interactions between physicians and relatives. The professionals surveyed in both countries expressed full awareness of the risks of conflict between physicians and relatives during LST limitation decisions and reported that these conflicts were almost always linked to requests from relatives to continue treatments deemed potentially inappropriate by the medical and paramedical teams. Given the specific regulations in each country, the conflict manifested itself differently between the two countries, but fundamentally, the ethical issue was the same. While in France, physicians seemed to be approached by relatives who wanted to make their voices heard in order to request the continuation of potentially inappropriate treatments, in the U.S., relatives encountered physicians who refused to be forced into practicing medicine that they considered futile and harmful (Table 3: Q17, Q18).

The goal expressed by physicians in both countries was to deeply consider the values defended by both physicians and relatives, and thereby try to reach a consensus (Table 3: Q19, Q20). In both France and the U.S., physicians reported that this deep consideration of values often helped to avoid or ameliorate genuine conflict and move towards consensus. However, in the most intractable cases of total incompatibility of values, the risk of serious conflict appeared to be high. In these cases, the conflicting values reported appeared to be the same in both countries with relatives defending the presumed wishes of the patient and “natural” death as the only possible death; and physicians defending their professional integrity and the priority for the cessation of patient’s suffering.

Discussion

In this study, we took the opportunity to compare frameworks and practices in France and the U.S. with the aim of identifying the central ethical issues surrounding interactions between physicians and relatives during end-of-life decisions in intensive care. First, we confirmed significant differences between the two models, particularly relating to how best to approach decision-making for patients lacking decisional capacity. Secondly, we showed that despite these differences, similar ethical tensions arise in both countries between physicians and relatives. We have defined these points of convergence as “structural elements” of interactions between physicians and relatives in the context of ethically difficult decisions in intensive care.

By combining field research in countries with different decision-making models, our study highlights the ethical tensions that arise during interactions between physicians and relatives over LST decisions for patients who lack decision-making capacity. The first structural element we identified concerns the central issue of the principle of respect for patient autonomy. Physicians face two major difficulties. The first is the scarcity of direct knowledge of the patient’s wishes. In France, advance directives are present in less than 2% of LST decisions during hospitalization in intensive care and less than 8% of the French population has written one, and this proportion has changed little over time [29, 30]. Similarly, in the U.S., less than a third of the population has written advance directives, with no increase in recent years either [31]. The second difficulty is that of the applicability of the patient’s wishes, insofar as they can be known. It is a major challenge for physicians or surrogates to infer the patient’s actual wishes from the patient’s previous directives and statements for a situation that the patient had not anticipated [32]. In fact, this leads intensivists, whether French or American, to disregard advance directives when they appear to be disconnected from the reality of the patient’s medical situation [33]. Strategies such as disease-specific planning and longitudinal approaches have improved patient-surrogate congruence [34, 35]. In this vein, a 2017 Delphi consensus redefined advanced care planning as a process rather than a document, which requires ongoing active engagement by stakeholders [36]. While when successful, advanced care planning has been shown to improve the moral burden of surrogate decision-makers, these is not yet evidence of broad and effective adoption of these approaches [37, 38].

Given these conditions, this principle of respect for patient autonomy is difficult to fully apply in intensive care. It is rather the notion of moral responsibility for the decisions to be made for the patient that comes to the fore. Intensivists are morally responsible precisely because the patient’s wishes are not sufficiently known and/or cannot be applied to the specific context of intensive care. Conversely, as philosopher Harry Frankfurt, following Aristotle, pointed out, we are not morally responsible if we act solely because we have no other choice, i.e., in this case, if we have sufficient knowledge of the patient’s wishes and those wishes could not be questioned [39]. Therefore, until we have resolved the issue of how patients can make decisions for themselves in advance without sowing doubt, this will remain a matter of physicians’ moral responsibility. And regardless of the decision-making model and who bears legal responsibility for the decision, physicians seem to bear at least part of this moral responsibility in any case, in the name of their professional integrity.

Finally, our study found that the risk of conflicting values between physicians and relatives is reported in both France and in the U.S., demonstrating that neither regulatory decision-making system protects against this risk. According to philosopher John Dewey, among others, values are not mere expressions of emotions but have a rational basis [40, 41]. Based on this premise, everyone’s values should be considered, just like rational medical arguments, and viewed as potentially different rationalities rather than simply dismissed as mere emotions.

These “structural elements” that we identified could be those on which future discussions should focus in order to improve practices and interactions between physicians and relatives during LST limitation decisions. These results suggest, first and foremost, that efforts should be focused on how to apply the principle of respect for patient autonomy or to consider other ways of best defining the patient’s best interests. Various proposals can be made. Firstly, improving the “ethical climate” in critical care units could be a goal to strive for [42]. In the context of LST decisions, a “good ethical climate” brings together the conditions that promote collective deliberation in the search for the best solution for the patient in a complex medical situation. Studies have shown that improving the ethical climate makes it easier to identify situations where there is a risk of potentially inappropriate treatment and improves family satisfaction [43, 44]. To improve the ethical climate in critical care, it could be useful to foster anticipatory and continuous discussions about the proportionality of treatments, both within care teams and with relatives, in order to avoid abrupt transitions from full intervention to LST decisions. It would also require acknowledging the inherent uncertainty of critical care and the moral complexity of LST decisions, thereby facilitating more open and value-based deliberation. In this perspective, ethical reflection would involve all stakeholders concerned by the patient’s trajectory, including physicians, nurses who often have close relationships with patients and families, other healthcare professionals, and relatives.

Another solution could be to extend the involvement of ethics committees and clinical ethics consultations. Seeking clinical ethics consultation, particularly in situations deemed to be at risk of value conflicts, appears to be beneficial in preventing disagreements and conflicts. By improving communication and organizing joint reflection between all stakeholders, clinical ethics consultation would help to promote consensus, even in the most high-risk situations [45–47]. To have a meaningful impact on the ethical climate, clinical ethics consultations should be integrated more broadly and anticipated earlier in the decision-making process, rather than being mobilized only in situations of conflict.

Finally, the moral dimension of decision-making emerges as a central issue. Beyond the question of who should decide, and more than shared decision-making [6], we propose the concept of “moral co-responsibility” in decision-making. While regulatory frameworks may establish a hierarchy of decision-making authority, as illustrated by the physician-led model in France and the surrogate-led model in the U.S., these frameworks do not fully capture the distribution of moral responsibility involved in such decisions.

We suggest that, regardless of who holds formal decisional authority, both physicians and family members share a form of moral responsibility for what happens to the patient. This “moral co-responsibility” implies recognizing that each party contributes to the ethical debate of the decision through distinct but legitimate forms of reasoning: medical and scientific expertise on the one hand, and the expression of patient values and personal meanings on the other.

In this perspective, the decision-making process should be understood as a deliberative space in which these different rationalities can be expressed, confronted, and integrated. A “moral co-responsibility” therefore entails not only the right to participate in the ethical discussion, but also the acknowledgment of a shared involvement in its consequences.

At the same time, such a framework requires a degree of flexibility from all parties. Accepting a “moral co-responsibility” means recognizing that, depending on the clinical and ethical context, one perspective may need to take precedence over another in order to reach the most ethically appropriate decision for the patient. This does not negate the plurality of viewpoints but rather frames it within a shared commitment to the patient’s best interests, even when this requires physicians or relatives to partially relinquish their initial positions.

Our study has a few limitations. Firstly, it was conducted in only one U.S. State. However, some ethicists with a more global view of U.S. practices were also interviewed, thereby limiting this bias. Secondly, while the interviews in France were audio-recorded, they were not recorded in the U.S. This difference in data collection methodology may have resulted in a loss of information from the interviews conducted in the U.S. Thirdly, although saturation was reached within the study sample, the voluntary nature of participation and the recruitment process may have influenced the range of perspectives included. In particular, non-physician stakeholders (e.g., nurses, social workers, clergy representatives) were underrepresented compared to physicians. Finally, the interviews were conducted by the same person in both countries, but consecutively (first in France, then in the U.S.). While the researcher was actively involved in data collection and analysis, we acknowledge that subjectivity is inherent to qualitative research and cannot be eliminated. In this study, we chose not to conduct a full iterative analysis between the two national phases in order to avoid prematurely structuring the analysis based on data from the first context. Although this may have limited iterative refinement, reflexive field notes were maintained throughout the study and informed the conduct of subsequent interviews.

Conclusion

Interactions between physicians and relatives during LST limitation decisions are a major issue in intensive care, and will continue to be challenging for a number of reasons, including but not limited to the technological imperative in these resource rich countries. By using the French and American models, which differ in terms of regulations, this study identifies converging ethical issues in these interactions, referred to as “structural elements.” Qualitative research in this area should continue and could focus on these elements.

Abbreviations

ICU

Intensive Care Unit

LST

Life-Sustaining treatment

U.S.

United States of America

Authors' contributions

MG participated in research design, in the writing of the paper, in the performance of the research and in data analysis. EMR, MZS, RT, MS, EW participated in the writing of the paper and in the performance of the research. MFM participated in the writing of the paper, in the performance of the research and in data analysis. JR participated in research design, in the writing of the paper, in the performance of the research and in data analysis. All authors read and approved the final manuscript.

Funding

Not applicable.

Data availability

The datasets used and/or analyzed during the current study are available from the corresponding author on reasonable request.

Declarations

Ethics approval and consent to participate

The study protocol was reviewed by ethics committees in France (Research Ethics Committee of the French Society of Anaesthesia and Intensive Care / Comité Éthique pour la Recherche en Anesthésie-Réanimation – CERAR, Société Française d’Anesthésie-Réanimation – SFAR) and in the United States (Mass General Brigham Institutional Review Board). In both cases, the committees determined that the study did not require formal ethics approval (SFAR IRB: Institutional Review Board – IRB 00010254–2022-005; Mass General Brigham IRB: ID# 1404). This study was conducted in accordance with the Declaration of Helsinki. Participation in the interviews was voluntary. Written informed consent was not required according to these determinations. Nevertheless, all participants received information about the objectives of the study and provided oral informed consent prior to participation, including permission for anonymized quotes to be published.

Consent for publication

Not applicable.

Competing interests

The authors declare no competing interests.