The research into patient involvement is seldom concerned with the significance of cultural and structural factors. In this discussion paper, we illustrate our considerations on some of the challenges in implementing the ideal of patient involvement by showing how such factors take part in shaping the ways in which the intentions to involve patients are converted to practical interventions. The aim was to contribute to the approach dealing with contextual and structural factors of significance for (...) class='Hi'>patient involvement. With the idea of “institutional logics,” borrowed from the Danish scholar, Erik Riiskjær, we first demonstrate, with examples from our own research, how patient involvement is interpreted differently within the different logics. Then, we show how the different interpretations of patient involvement meet and conflict in mutual competition as the ideals are sought to be converted to practical interventions. At last, we argue that an adequate theoretical model for the development in the future health care system should be expanded with a “patient logic.”. (shrink)

Ethics consultation is a novel paradigm in European health-care institutions. In this paper, patient involvement in all clinical ethics activities is scrutinized. It is argued that patients should have access to case consultation services via clearly defined access paths. However, the right of both health-care professionals and patients indicates that patients should not always be notified of a consultation. Ethics education, another well-established function of an ethics committee, should equally be available for patients, lay people and hospital staff. (...) Beyond access and utilization, lay membership on a clinical ethics service is a matter of transparency, equal participation, empowerment and democratization. Lay and patient perspectives will contribute to the quality of ethics services on all levels from case consultations to ethics education and policy development. (shrink)

With healthcare systems under pressure from scarcity of resources and ever‐increasing demand for services, difficult priority setting choices need to be made. At the same time, increased attention to patient involvement in a wide range of settings has given rise to the idea that those who are eventually affected by priority setting decisions should have a say in those decisions. In this paper, we investigate arguments for the inclusion of patient representatives in priority setting bodies at the (...) policy level. We find that the standard justifications for patient representation, such as to achieve patient‐relevant decisions, empowerment of patients, securing legitimacy of decisions, and the analogy with democracy, all fall short of supporting patient representation in this context. We conclude by briefly outlining an alternative proposal for patient participation that involves patient consultants. (shrink)

The question we raise in this paper is, whether patient involvement might be a beneficial way to help determine and achieve the aims of translational research and, if so, how to proceed. TR is said to ensure a more effective movement of basic scientific findings to relevant and useful clinical applications. In view of the fact that patients are supposed to be the primary beneficiaries of such translation and also have relevant knowledge based on their experience, listening to (...) their voice early on in the innovation process might very well increase the effectiveness of the translation. After explaining how the concept of TR emerged and what it entails, this paper shows through a literature review which arguments have been put forward to promote patient involvement in health care research in a more general sense. We examine whether, and if so how, these arguments are relevant for the discourse on TR and we identify pitfalls and dilemmas. Ultimately, we conclude that it may be worthwhile to experiment with patient involvement in TR but that the design of such involvement requires careful consideration. (shrink)

This paper presents findings from a longitudinal study of patient refusals (as reported by graduating medical students) to take part in the teaching function of public hospitals. Results from a smaller study of non-patients' attitudes are also reported. Findings are discussed in terms of patients' rights, issues of personal privacy, medical education, and the public good.

The importance of patient involvement is increasing in healthcare, and initiatives are constantly implemented to reach the ideal of involved and educated patients. This secondary analysis was initially embedded in a randomized controlled study where the aim was to gain insight into perceptions and experiences within a group of women undergoing fertility treatment through two focus group interviews. In this secondary analysis, we investigated how patient involvement was strived for in both clinical practice and research. During (...) the analysis, it became apparent that the women exercised and maintained a clear perspective on their hope for a child, Project Child, while the interviewer pursued a treatment perspective, Project Treatment. Despite different perspectives, the conversation during the interviews seemed effortless, and it became apparent how the interviewer and the participants were actually focusing partly on the same, but primarily on different issues but without addressing or acknowledging this. Knowledge and awareness of the difference in perspectives is important when healthcare professionals seek to involve patients both in clinical practice and in research. Patient involvement in both research and clinical practice has shown to be a challenge and entails that pathways are organized and decisions shared by healthcare professionals. (shrink)

Background:Ideas of patient involvement are related to notions of self-determination and autonomy, which are not always in alignment with complex interactions and communication in clinical practice.Aim:To illuminate and discuss patient involvement in routine clinical care situations in nursing practice from an ethical perspective.Method:A case study based on an anthropological field study among patients with advanced cancer in Denmark.Ethical considerations:Followed the principles of the Helsinki Declaration.Findings:Two cases illustrated situations where nurses refused patient involvement in their (...) own case.Discussion:Focus on two ethical issues, namely ‘including patients’ experiences in palliative nursing care’ and ‘relational distribution of power and knowledge’, inspired primarily by Hannah Arendt’s concept of thoughtlessness and a Foucauldian perspective on the medical clinic and power. The article discusses how patients’ palliative care needs and preferences, knowledge and statements become part of the less significant background of nursing practice, when nurses have a predefined agenda for acting with and involvement of patients. Both structurally conditioned ‘thoughtlessness’ of the nurses and distribution of power and knowledge between patients and nurses condition nurses to set the agenda and assess when and at what level it is relevant to take up patients’ invitations to involve them in their own case.Conclusion:The medical and institutional logic of the healthcare service sets the framework for the exchange between professional and patient, which has an embedded risk that ‘thoughtlessness’ appears among nurses. The consequences of neglecting the spontaneous nature of human action and refusing the invitations of the patients to be involved in their life situation call for ethical and practical reflection among nurses. The conditions for interaction with humans as unpredictable and variable challenge nurses’ ways of being ethically attentive to ensure that patients receive good palliative care, despite the structurally conditioned logic of healthcare. (shrink)

The question we raise in this paper is, whether patient involvement might be a beneficial way to help determine and achieve the aims of translational research and, if so, how to proceed. TR is said to ensure a more effective movement of basic scientific findings to relevant and useful clinical applications. In view of the fact that patients are supposed to be the primary beneficiaries of such translation and also have relevant knowledge based on their experience, listening to (...) their voice early on in the innovation process might very well increase the effectiveness of the translation. After explaining how the concept of TR emerged and what it entails, this paper shows through a literature review which arguments have been put forward to promote patient involvement in health care research in a more general sense. We examine whether, and if so how, these arguments are relevant for the discourse on TR and we identify pitfalls and dilemmas. Ultimately, we conclude that it may be worthwhile to experiment with patient involvement in TR but that the design of such involvement requires careful consideration. (shrink)

Background To characterize patients dying in a community hospital with or without attempting cardiopulmonary resuscitation and to describe patient involvement in, documentation of, and compliance with decisions on resuscitation. Methods All patients who died in Kalmar County Hospital during January 1, 2016 until December 31, 2016 were included. All information from the patients’ electronic chart was analysed. Results Of 660 patients female), 30 were pronounced dead in the emergency department after out-of-hospital CPR. Of the remaining 630 patients a (...) DNAR order had been documented in 558 patients. Seventy had no DNAR order and 2 an explicit order to do CPR. In 43 of these 70 patients CPR was unsuccessfully attempted while the remaining 27 patients died without attempting CPR. In 2 of 558 patients CPR was attempted despite a DNAR order in place. In 412 patients the DNAR order had not been discussed with neither patient nor family/friends. Moreover, in 75 cases neither patient nor family/friends were even informed about the decision on code status. Conclusions In general, a large percentage of patients in our study had a DNAR order in place. However, 27 patients died without CPR attempt or DNAR order. DNAR orders had not been discussed with the patient/surrogate in almost three fourths of the patients. Further work has to be done to elucidate the barriers to discussions of CPR decisions with the patient. (shrink)

Patient and public involvement (PPI) has gained widespread support in health research and health policy circles, but there is little consensus on the precise meaning or justifications of PPI. We argue that an important step towards clarifying the meaning and justification for PPI is to split apart the familiar acronym and draw a distinction between patient and public involvement. Specifically, we argue that patient involvement should refer to the practice of involving individuals in health (...) research or policy on the basis of their experience with a particular condition, while public involvement should refer to the practice of involving individuals in health policy or research based on their status as members of a relevant population. Analyzing cases from the UK, Australia, and the USA, we show how our proposed distinction can deliver much needed clarity to conversations on PPI, while guiding the development and evaluation of future PPI‐based policies. (shrink)

The importance of patients taking an active role in their healthcare is recognized internationally, to improve safety and effectiveness in practice. There is still, however, some ambiguity about the conceptualization of that patient role; it is referred to interchangeably in the literature as engagement, involvement, and participation. The aim of this discussion paper is to examine and conceptualize the concepts of patient engagement, involvement, and participation within healthcare, particularly nursing. The concepts were found to have semantic (...) differences and similarities, although, from a nursing perspective, they can be summoned to illustrate the establishment of a mutual partnership between a patient and a nurse. The individualization of such processes requires the joint effort of engagement, involvement, or participation, represented by interactive actions of both the patient (asking questions, telling/speaking up, knowledge acquisition, learning, and decision‐making) and the nurse (recognizing, responding, information sharing, teaching, and collaborating). Suggesting that the concepts can be used interchangeably comes with some caution, requiring that nurses embrace patients playing a role in their health and healthcare. Further research and practice development should focus on how patients and nurses receive and respond to each other to establish patient engagement, involvement, and participation. (shrink)

To date, few Norwegian clinical ethics committees (CECs) have included patients or next of kin in case discussions. In 2008, Rikshospitalet's (The National Hospital's) CEC began to routinely invite patients and relatives into case discussions. In this paper, we describe seven cases discussed by this committee in 2008. Six involved life and death decision-making in collaboration with the next of kin, while one related case did not include relatives. In our opinion, representing the patient's perspective was advantageous to the (...) discussion itself, to the conclusion made and to the next of kin's acceptance of the resolution. We believe that if the patient had been represented in the last case, the outcome might have been different. We conclude that successful patient involvement will rely on well-structured case discussions, an open atmosphere and good preparation and follow-up. (shrink)

In this article, we report the findings from a qualitative study that explored how relatives of terminally ill, alert and competent intensive care patients perceived their involvement in the end-of-life decision-making process. Eleven family members of six deceased patients were interviewed. Our findings reveal that relatives narrate about a strong intertwinement with the patient. They experienced the patients’ personal individuality as a fragile achievement. Therefore, they viewed their presence as crucial with their primary role to support and protect (...) the patient, thereby safeguarding his values and interests. However, their inclusion in decision making varied from active participation in the decision-making process to acceptance of the physicians’ decision or just receiving information. We conclude that models of informed shared decision making should be utilised and optimised in intensive care, where nurses and physicians work with both the patient and his or her family and regard the family as partners in the process. (shrink)

A recent paper in this journal (1) suggests that involving terminally ill patients in choices concerned with Cardio-Pulmonary Resuscitation (CPR) produces 'psychological pain' and therefore is ill-advised. Such a claim rests on anecdotal observations made by the authors. In this paper I suggest that drawing conclusions in ethics, no less than in science, requires a rigorous framework and cannot be relegated to personal observation of a few cases. The paper concludes by suggesting that patients, if we acknowledge their valid interest (...) in making their own choices, must themselves be allowed to make a prior choice about choosing. Those who may not wish to choose may properly be relieved of this burden and may allow another to choose for them. Routinely allowing others to make choices for competent adults, however, is likely to decrease communication with the dying patient and to introduce an atmosphere of suspicion and fear and to exclude the competent patient from his/her rightful place in the community. (shrink)

This paper describes a pilot study of a new model for narrative medicine training, “community-based participatory narrative medicine”, which centers on shared narrative work between healthcare trainees and patients. Nine medical students and eight patients participated in one of two, five-week-long pilot workshop series. A case study of participants’ experiences of the workshop series identified three major themes: the reciprocal and collaborative nature of participants’ relationships; the interplay between self-reflection and receiving feedback from others; and the clinical and pedagogical implications (...) of the CBPNM model. Principles and proposed outcomes of the CBPNM model are presented. (shrink)

Many of the elderly in nursing homes are very ill and have a reduced quality of life. Life expectancy is often hard to predict. Decisions about life-prolonging treatment should be based on a professional assessment of the patient’s best interest, assessment of capacity to consent, and on the patient’s own wishes. The purpose of this study was to investigate and compare how these types of decisions were made in nursing homes and in hospital wards. Using a questionnaire, we (...) studied the decision-making process for 299 nursing home patients who were treated for dehydration using intravenous fluids, or for bacterial infections using intravenous antibiotics. We compared the 215 patients treated in nursing homes to the 84 nursing home patients treated in the hospital. The patients’ capacity to consent was considered prior to treatment in 197 of the patients treated in nursing homes and 56 of the patients treated in hospitals. The answers indicate that capacity to consent can be difficult to assess. Patients that were considered capable to consent, were more often involved in the decision-making in nursing homes than in hospital. Next of kin and other health personnel were also more rarely involved when the nursing home patient was treated in hospital. Whether advance care planning had been carried out, was more often unknown in the hospital. Hospital doctors expressed more doubt about the decision to admit the patient to the hospital than about the treatment itself. This study indicates a potential for improvement in decision-making processes in general, and in particular when nursing home patients are treated in a hospital ward. The findings corroborate that nursing home patients should be treated locally if adequate health care and treatment is available. The communication between the different levels of health care when hospitalization is necessary, must be better. ClinicalTrials. gov NCT01023763 [The registration was delayed one month after study onset due to practical reasons]. (shrink)

Patient consent has been formulated in terms of radical individualism rather than shared benefits. Medical education relies on the provision of patient consent to provide medical students with the training and experience to become competent doctors. Pelvic examination represents an extreme case in which patients may legitimately seek to avoid contact with inexperienced medical students particularly where these are male. However, using this extreme case, this paper will examine practices of framing and obtaining consent as perceived by medical (...) students. This paper reports findings of an exploratory qualitative study of medical students and junior doctors. Participants described a number of barriers to obtaining informed consent. These related to misunderstandings concerning student roles and experiences and insufficient information on the nature of the examination. Participants reported perceptions of the negative framing of decisions on consent by nursing staff where the student was male. Potentially coercive practices of framing of the decision by senior doctors were also reported. Participants outlined strategies they adopted to circumvent patients’ reasons for refusal. Practices of framing the information used by students, nurses and senior doctors to enable patients to decide about consent are discussed in the context of good ethical practice. In the absence of a clear ethical model, coercion appears likely. We argue for an expanded model of autonomy in which the potential tension between respecting patients’ autonomy and ensuring the societal benefit of well-trained doctors is recognised. Practical recommendations are made concerning information provision and clear delineations of student and patient roles and expectations. (shrink)

Patients and their family members may become highly interdependent as patients near the end of life. To best help these patients, healthcare providers can try to become a member of the patient/family team. By becoming a member, careproviders can improve patients’ and family members’ access to medical information, more effectively offer advice, and assure patients and family members that they can still choose to do what they think is best.

The literature on patient public involvement and engagement (PPIE) in health research has grown significantly in the last decade, with a diverse range of definitions and topologies promulgated. This has led to disputes over what the central functions and purpose of PPIE in health research is, and this in turn makes it difficult to assess and evaluate PPIE in practice. This paper argues that the most important function of PPIE is the attempt to make health research more democratic. (...) Bringing this function to the fore and locating PPIE in the wider context of changes in contemporary forms of democratic engagement provides greater conceptual clarity over what PPIE in research should be trying to achieve. Conceptualizing PPIE as a form of democratization has a number of benefits. First, theories of what are appropriate, normatively justifiable and workable criteria for PPIE practices can be developed, and this can provide tools to address the legitimacy and accountability questions that have troubled the PPIE community. Second, this work can be used to form the basis of a research agenda to investigate how PPIE in health research operates, and how it can facilitate and/or improve democratic processes in health research. (shrink)

The degree and nature of patient involvement in consultations with health professionals influences problem and needs recognition and management, and public accountability. This paper suggests a framework for understanding the scope for patient involvement in such consultations. Patients are defined as co-producers of formal health services, whose potential for involvement in consultations depends on their personal rights, responsibilities and preferences. Patients' rights in consultations are poorly defined and, in the National Health Service (NHS), not legally (...) enforceable. The responsibilities of patients are also undefined. I suggest that these are not to deny, of their own volition, the rights of others, which in consultations necessitate mutuality of involvement through information-exchange and shared decision-making. Preferences should be met insofar as they do not militate against responsibilities and rights. (shrink)

Many research institutions and funders have recently stated their commitment to actively support and promote ‘Equality, Diversity and Inclusion’ (EDI) in various aspects of health research including Patient and Public Involvement (PPI). However, translating this commitment into specific research projects presents significant challenges that existing approaches, practical guidelines and initiatives have not adequately addressed. In this paper, we explore how the lack of clear justifications for the EDI commitment in existing guidelines inadvertently complicates the work of those involved (...) with PPI and we stress the need for conceptual clarity for any EDI effort to yield meaningful results. Our focus centres on the first principle of the EDI discourse, ‘equality’, particularly in the form of ‘equality of opportunity’ as outlined in current guidance provided by the National Institute of Health Research in the United Kingdom. We examine challenges related to justifying and implementing a general, unspecified commitment to equality of opportunity and explain that this reflects a lack of consensus regarding the moral value of PPI in research – a profound problem that remains unaddressed. We then discuss how the presence of several opposing moral perspectives on PPI, makes determining the most appropriate way of addressing barriers to involvement complex and controversial, raising ethical implications for the work of health researchers, PPI specialists and coordinators. Finally we make suggestions on how future research can enrich the concept of ‘equality of opportunity’ in PPI and improve practice. While our primary focus is on the NIHR, a strong advocate of PPI in research, this analysis will point to normative and ethical considerations that may be relevant to other research institutions and funding organisations aiming to promote equality of opportunity in their public and patient involvement strategies. (shrink)

Biomedical research policy in recent years has often tried to make such research more ‘translational’, aiming to facilitate the transfer of insights from research and development to health care for the benefit of future users. Involving patients in deliberations about and design of biomedical research may increase the quality of R&D and of resulting innovations and thus contribute to translation. However, patient involvement in biomedical research is not an easy feat. This paper discusses the development of a method (...) for involving patients in biomedical research aiming to address its main challenges.After reviewing the potential challenges of patient involvement, we formulate three requirements for any method to meaningfully involve patients in biomedical research. It should enable patients to put forward their experiential knowledge, to develop a rich view of what an envisioned innovation might look like and do, and to connect their experiential knowledge with the envisioned innovation. We then describe how we developed the card-based discussion method ‘Voice of patients’, and discuss to what extent the method, when used in four focus groups, satisfied these requirements. We conclude that the method is quite successful in mobilising patients’ experiential knowledge, in stimulating their imaginaries of the innovation under discussion and to some extent also in connecting these two. More work is needed to translate patients’ considerations into recommendations relevant to researchers’ activities. It also seems wise to broaden the audience for patients’ considerations to other actors working on a specific innovation. (shrink)

Biomedical research policy in recent years has often tried to make such research more ‘translational’, aiming to facilitate the transfer of insights from research and development to health care for the benefit of future users. Involving patients in deliberations about and design of biomedical research may increase the quality of R&D and of resulting innovations and thus contribute to translation. However, patient involvement in biomedical research is not an easy feat. This paper discusses the development of a method (...) for involving patients in biomedical research aiming to address its main challenges. (shrink)

Patients’ perception with regards to their use in medical teaching is an under-researched area in Pakistan. The objective of this qualitative, pilot study was to determine the perspectives of hospital admitted patients on their being used in the medical education of students in a private medical institution. An attempt to understand the dynamics of interactions between patients, students and doctors was also made and to see how this affected the doctor-patient relationship. A qualitative study with in-depth interviews was conducted (...) in a private medical college of Islamabad, Pakistan with a total of 20 adult patients. The focus was on their experiences with bedside teaching. This pilot study reveals interesting findings about patient-physician interactions in Pakistan. Patients had a traditionally passive role in medical education putting more onuses on the doctor to impart knowledge to the medical students. Patients comforted themselves in the knowledge that they were following Allah’s command when they were involved in the teaching of medical students. The apparent altruism of Pakistani patients in this study was influenced mainly by religious reasons, following the commandments of Allah to help develop future healers for humanity. The culture evident in the medical college where this study was conducted is reflective of the social power ladders that pervade Pakistani society. The positions of doctors and medical teachers in Pakistani society are hardly challenged to debate. Little attention has been paid to the values that influence the cultural and social frameworks within which Pakistani medical teachers, medical students and the patients function. (shrink)

BlOMQVIST K, THEANDER E, MOWIDE I and LARSSON V. Nursing Inquiry 2010; 17: 317–323 What happens when you involve patients as experts? a participatory action research project at a renal failure unitAlthough there is a trend towards developing health care in a patient‐centred direction, changes are usually planned by the professionals without involving the patients. This paper presents an ongoing participatory action research project where patients with chronic renal failure, nurses at a specialist renal failure unit, a hospital manager (...) and a researcher worked together to develop patient‐centred care. The project combined the expertise of patients in their own experiences of living with a chronic condition with the professional expertise of nurses, the manager and the researcher. As the workload on the unit was uneven, the development work needed to be low in intensity but long‐term. Based on a number of dialogues in focus groups, four main development areas were identified; access to test results, prerequisites for postponing the progress of the illness, general awareness and understanding of living with chronic renal failure, and family‐focused care. A number of changes have been planned or implemented, such as developing a prototype for a web‐based feed‐back system, expanding patient education to newly diagnosed patients, steering the nurses' role towards a guiding and family‐focused function, and planning a digital story‐telling workshop. Involving committed people who have the mandate to change practices were prerequisites for success. (shrink)

Out of a concern for keeping suicidal patients alive, some psychotherapists may use hard persuasion or coercion to keep them in treatment. However, more recent evidence-supported interventions have made respect for patient autonomy a cornerstone, showing that the effective interventions that promote the wellbeing of suicidal patients also prioritize respect for patient autonomy. This article details how psychotherapists can incorporate respect for patient autonomy in the effective treatment of suicidal patients by listening to them, explaining treatments to (...) them, involving them in decisions, and inviting evaluations from them on the process and progress of their treatment. It also describes how processes that respect patient autonomy can supplement interventions that directly address some of the drivers of suicide. (shrink)

Interacting with others frequently involves making common-sense inferences linking context, background knowledge, and beliefs to utterances in the dialogue. As language users we are generally good at this kind of dialogical reasoning, and might not even be aware we are involved in it while we engage in a conversation. However, sometimes it is not obvious how a particular contribution should be interpreted in terms of the underpinning assumptions warranting an inference. In dialogue involving participants who demonstrate atypical linguistic behavior, such (...) as patients with schizophrenia, the effects may be even more marked. (shrink)

BackgroundFrance has long been a country of immigration and in some respects may be seen to have a generous policy with respect to asylum seekers and access to health care for migrants. The French state notably provides healthcare access for undocumented migrants, through state medical aid and since 1998 has had a humanitarian policy for granting temporary residence permits for medical reason to migrants. Within a context of political debate, reform and tightening immigration control we will examine this latter policy (...) focusing especially on the dilemmas that arise for physicians of migrant patients when they are requested to write medical certificates as part of a TRPMR application. In a 2017 reform the key role of making recommendations on the granting or not of permits was handed over to Ministry of the Interior health inspectors. Recommendations are made after perusal of medical certificates established by the migrant’s physician and complementary evidence.Main bodyThe writing of medical certificates by a physician would seem straightforward. This is far from the case since it raises a number of ethical dilemmas. These occur within a physician-patient relationship embedded within a social contract between the State, the physician and the migrant patient. To clarify the ethical issues arising 3 vignettes based on practice within an infectious disease unit at a large Paris hospital have been developed. The vignettes highlight ethical dilemmas in the care for migrants with tuberculosis, chronic hepatitis, and HIV / AIDS. We will go on to reflect on issues of social justice and responsibility for the health of migrants within a globalized world.ConclusionsCriteria for residence permit delivery appear less than clear-cut and are interpreted in a restrictive way. Neither are the consequences of refusing a residence permit taken into account. We call for an empirical transnational ethics study involving countries implementing similar TRPMR policies. We also call for inclusion of lobbying competences into the medical undergraduate curricula, in order to breed future generations of physicians skilled in defending social justice. (shrink)

In this essay, I argue that the daily practice of expert nurses goes far toward enacting the kind of patient autonomy feminist bioethicists envision. Nursing theorists often utilize philosophical theories in their work, but bioethicists have not paid much attention to nursing theory and what it means to be an expert nurse. This is unfortunate because expert nurses do much in their daily practice to make the ideals for autonomy put forth by feminist bioethicists a reality. With this in (...) mind, I bring these two literatures together in what I hope is a fruitful dialogue. (shrink)

BackgroundThe ageing of the population and the increased number of chronic diseases are associated with an increased frequency of end of life care in hospital settings. Residents rotating in hospital wards play a major part in their care, regardless of their specialty. General practitioner (GP) residents are confronted to such activities in hospital settings during their training. Our aim was to know how they feel about taking care of dying patients, as end-of-life care are very different from the clinical activity (...) they are trained to.MethodsWe surveyed all GP trainees of “Ile de France”. The survey was made of 41 questions regarding advanced directives divided in 7 sections about patients’ care, communication, mentoring and repercussion on personal life. The survey was done one time, during two pre-specified days.Results525 residents (53.8%) accepted to fulfill the survey. 74.1% of the residents thought that palliative care could have been better. Possible ways of improvements were: a reduction of unreasonable obstinacy (or therapeutic overkill, two terms defined in French law as curative treatment without reasonable hope of efficiency) (59.6%), patient’s (210 answers, 40%) and relative’s communication (information of patients and relatives about the severity of the disease and risk of death) (199 answers 37.9%). Residents also reported a lack of knowledge regarding end-of-life care specific treatments (411 answers, 79.3%) and 298 (47.2%) wished for better mentoring. Those difficulties were associated with repercussion on their private life (353 answers, 67.2%), particularly with their close relatives (55.4%). Finally, 56.2% of trainees thought that a systematic psychologic follow up should be instituted for those working in “at risk” hospital settings.ConclusionSelf-perception management of dying patients by GP resident emphasize their lack of training and supervision. The feeling of suboptimal care is associated with consequences on personal life. (shrink)

Volume 19, Issue 10, October 2019, Page 99-101.

The American Journal of Bioethics, Volume 12, Issue 5, Page 16-18, May 2012.