Interdisciplinary research approach based on a mixed-methods design to explore patient altruism at the end of life: a study protocol.

INTRODUCTION: In the end of life context, patients are often seen as somewhat passive recipients of care provided by health professionals and relatives, with little opportunity to be perceived as autonomous and active agents. Since studies show a very high prevalence of altruistic dispositions in palliative care patients, we strive to investigate the concept of patient altruism in a set of six interdisciplinary studies by considering three settings: (1) in the general palliative context-by studying to what extent patient altruism is associated with essential psychological outcomes of palliative care (subproject 1a), how altruism is understood by patients (subproject 1b) and how altruism expressed by patients is experienced by palliative care nurses (subproject 1c); (2) in two concrete decision-making contexts-advance care planning (subproject 2a) and assisted suicide (subproject 2b); and (3) through verbal and non-verbal patient communication in palliative care settings (subproject 3). METHODS AND ANALYSIS: Subproject 1a: a cross-sectional study using validated and standardised questionnaires. Subprojects 1b and 1c: a constructivist grounded theory method aiming at developing a novel theory from semistructured interviews in both patients and nurses. Subproject 2a: a thematic analysis based on (1) audio-recordings of advance care planning encounters and (2) follow-up semidirective interviews with patients and their relatives. Subproject 2b: a qualitative study based on thematic analysis of interviews with patients actively pursuing assisted suicide and one of their relatives.Subproject 3: a conversation analysis based on audio and video-recorded interactions in two settings: (1) palliative inpatient unit and (2) advance care planning discussions. ETHICS AND DISSEMINATION: The study project was approved by the Ethics Committees of the Canton of Vaud, Bern and Ticino (no: 2023-00088). In addition to participation in national and international conferences, each project will be the subject of two scientific publications in peer-reviewed journals. Additional publications will be realised according to result triangulation between projects. A symposium opened to professionals, patients and the public will be organised in Switzerland at the end of the project.

Patient altruism at the end of life: A scoping review.

OBJECTIVES: The concept of altruism is evidenced in various disciplines but remains understudied in end-of-life (EOL) contexts. Patients at the EOL are often seen as passive recipients of care, whereas the altruism of professionals and families receives more research and clinical attention. Our aim was to summarize the state of the scientific literature concerning the concept of patient altruism in EOL contexts. METHODS: In May 2023, we searched 11 databases for scientific literature on patient altruism in EOL contexts in consultation with a health information specialist. The scoping review is reported using the PRISMA checklist for scoping reviews. We used a data charting form to deductively extract data from the selected articles and then mapped data into 4 themes related to our research questions: how authors describe and employ the concept of patient altruism; expressions of patient altruism; consequences of patients' altruistic acts; and possible interventions fostering patient altruism. RESULTS: Excluding duplicates, 2893 articles were retrieved; 33 were included in the final review. Altruism was generally considered as an act or intention oriented toward the benefit of a specific (known) or non-specific (generic) recipient. Patients expressed altruism through care and support, decisions to withhold treatment or actively hasten death, and engagement in advance care planning. Consequences of altruism were categorized in patient-centered (contribution to meaning in life and quality of life), non-patient-centered (leaving a positive impact and saving money), and negative consequences (generating feelings of guilt, exposing individuals with low self-esteem). Interventions to encourage altruism comprised specific interventions, providing opportunities to plan for future care, and recognizing and respecting the patients' altruistic motivations. SIGNIFICANCE OF RESULTS: We identified heterogeneous and limited research conceptualization of patient altruism and its operationalization in palliative care settings. A deeper conceptual, empirical, and theoretical exploration of patient altruism in EOL is necessary.

Introducing "A Question That Might, Perhaps, Scare you": How Geriatric Physicians Approach the Discussion About Cardiopulmonary Resuscitation with Hospitalized Patients.

Decisions about the relevance of life-sustaining treatment, such as cardiopulmonary resuscitation (CPR), are commonly made when a patient is admitted to the hospital. This article aims to refine our understanding of how discussions about CPR are introduced, to identify and classify the components frequently occurring in these introductions, and discuss their implications within the overarching activity (discussing CPR). We recorded 43 discussions about CPR between physicians and patients, taking place during the admission interview. We applied an inductive qualitative content analysis and thematic analysis to all the encounter content from the launch of the conversation on CPR to the point at which the physician formulated a question or the patient an answer. We identified this part of the encounter as the "introduction." This systematic method allowed us to code the material, develop and assign themes and subthemes, and quantify it. We identified four major themes in the introductions: (i) agenda setting; (ii) circumstances leading to CPR (subthemes: types of circumstances, personal prognostics of cardiac arrest); (iii) the activity of addressing CPR with the patient (subthemes: routine, constrain, precedence, sensitivity); and (iv) mentioning advance directives. Our findings reveal the elaborate effort that physicians deploy by appealing to combinations of these themes to account for the need to launch conversations about CPR, and highlight how CPR emerges as a sensitive topic.

"If I Become a Vegetable, Then no": A Thematic Analysis of How Patients and Physicians Refer to Prognosis When Discussing Cardiopulmonary Resuscitation.

Background: Documenting decisions about the relevance cardiopulmonary resuscitation (CPR) is a standard practice at hospital admission yet a complex task. Objective: Our aim was to explore how physicians approach and discuss CPR prognosis with older patients recently admitted to a post-acute care unit. Method: We recorded 43 conversations between physicians and patients about the relevancy of CPR that took place at admission at the geriatric rehabilitation service of a Swiss university hospital. Thematic analysis determined (i) who initiated the talk about CPR prognosis, (ii) at what point in the conversation, and (iii) how prognosis was referred to. Results: Prognosis was mentioned in 65% of the conversations. We categorized the content of references to CPR prognosis in five themes: factors determining the prognosis (general health, age, duration of maneuvers); life (association of CPR with life, survival); proximal adverse outcomes (broken ribs, intensive care); long-term adverse outcomes (loss of autonomy, suffering a stroke, pain, generic, uncertainty); and being a burden. Discussion and conclusion: Discussing CPR is important to all patients, including those for whom it is not recommended. Information about CPR prognosis is essential to empower and support patients in expressing their expectations from life-prolonging interventions and attain shared decision-making.

Decision-making ethics in regards to life-sustaining interventions: when physicians refer to what other patients decide.

BACKGROUND: Health decisions occur in a context with omnipresent social influences. Information concerning what other patients decide may present certain interventions as more desirable than others. OBJECTIVES: To explore how physicians refer to what other people decide in conversations about the relevancy of cardio-pulmonary resuscitation (CPR) or do-not-attempt-resuscitation orders (DNAR). METHODS: We recorded forty-three physician-patient admission interviews taking place in a hospital in French-speaking Switzerland, during which CPR is discussed. Data was analysed with conversation analysis. RESULTS: Reference to what other people decide in regards to CPR is used five times, through reported speech. The reference is generic, and employed as a resource to deal with trouble encountered with the patient's preference, either because it is absent or potentially incompatible with the medical recommendation. In our data, it is a way for physicians to present decisional paths and to steer towards the relevancy of DNAR orders ("Patients tell us 'no futile care'"). By calling out to a sense of membership, it builds towards the patient embracing norms that are associated with a desirable or relevant social group. CONCLUSIONS: Introducing DNAR decisions in terms of what other people opt for is a way for physicians to bring up the eventuality of allowing natural death in a less overt way. Formulating treatment choices in terms of what other people do has implications in terms of supporting autonomous and informed decision making, since it nudges patients towards conformity with what is presented as the most preferable choice on the basis of social norms.

"Do you want us to try to resuscitate?": Conversational practices generating patient decisions regarding cardiopulmonary resuscitation.

OBJECTIVE: To explore how physicians elicit patients' preferences about cardio-pulmonary resuscitation (CPR) during hospital admission interviews. METHODS: Conversation analysis of 37 audio-recorded CPR patient-physician discussions at admission to a geriatric hospital. RESULTS: The most encountered practice is when physicians submit an option to the patient's validation ("do you want us to resuscitate"). Through it, physicians display presuppositions about the patient's preference, which is not elicited as an autonomous contribution. Through open elicitors ("what would you wish"), physicians treat patients as knowledgeable about options and autonomous in determining their preference. A third practice is related to patients delivering their preference in anticipation of the request and is encountered only for choices against CPR. These decisions are revealed as informed and autonomous, and the patient as collaborative. CONCLUSION: The way that physicians elicit patients' preferences about CPR influences the delivery of autonomous and informed decisions. Our findings point to an asymmetry in ways of initiating talk about the possibility of not attempting CPR, potentially exacerbated by the context of admission interviews. PRACTICE IMPLICATIONS: Decisions about the relevancy life-sustaining interventions need an adequate setting in order to allow for patient participation. Our findings have implications for communication training in regard to involving patients in conversations about goals of care.

Implementing advance care planning in early dementia care: results and insights from a pilot interventional trial.

BACKGROUND: Advance care planning (ACP) is particularly appropriate for persons with early dementia (PWED) since it promotes conversations about dementia-specific illness scenarios, addresses inconsistencies between advance directives and patients' observed behavior, emphasizes prospective and relational autonomy, and may be generally consistent with older persons' decision-making needs. However, despite evidence of its benefits, ACP is yet to become widely used among PWED. In this paper, we present a dementia-specific tool developed in Western Switzerland, discuss results of a pilot trial designed to promote ACP among PWED and their relatives, and discuss the feasibility and acceptability of the intervention and the study protocol in prevision of a large scale trial. METHODS: This one-arm pre-post pilot trial consisted of four visits, with visits 2 and 3 being the ACP intervention. Quantitative outcome measures during visit 1 and 4 assessed the aptitude of the intervention to support PWED autonomy and relatives' knowledge of PWED's preferences. Feasibility was explored according to how the recruitment procedure unfurled and based on the necessary revisions to the study protocol and healthcare providers' reason for excluding a PWED from the study. Acceptability was assessed according to pre-post evaluations, difficulties regarding the intervention or trial participation, and pre-post qualitative interviews regarding participants' reasons to participate to the study, satisfaction with the tool and difficulties perceived. RESULTS: The ACP intervention itself was well received by PWED and their relatives that expressed satisfaction with the procedure, especially regarding the opportunity to discuss a sensitive topic with the help of a facilitator. Five main challenges in terms of feasibility were 1) to locate eligible patients, 2) to tailor recruitment procedures to recruitment locations, 3) to adapt inclusion criteria to clinical routines, 4) to engage PWED and their relatives in ACP, and 5) to design a trial that does not burden PWED. Despite these challenges, the intervention increased the number of advance directives, the concordance between PWED's preferences and relatives' decision on their behalf, and relatives' perceived control over healthcare decisions. CONCLUSION: Misconceptions about dementia and ACP, in the patient, relatives, and healthcare providers, combined with structural and institutional challenges, have the power to impede research and implementation of ACP in dementia care. For this reason, we conclude that a large scale trial to test a dementia-specific tool of ACP is currently not feasible in Western Switzerland and should be endorsed in a systemic approach of ACP. TRIAL REGISTRATION: This trial was registered in the database clinicaltrial.gov with the number NCT03615027 .

'It's not magic': A qualitative analysis of geriatric physicians' explanations of cardio-pulmonary resuscitation in hospital admissions.

BACKGROUND: Discussing patient preferences for cardio-pulmonary resuscitation (CPR) is routine in hospital admission for older people. The way the conversation is conducted plays an important role for patient comprehension and the ethics of decision making. OBJECTIVE: The objective was to examine how CPR is explained in geriatric rehabilitation hospital admission interviews, focussing on circumstances in which physicians explain CPR and the content of these explanations. METHOD: We recorded forty-three physician-patient admission interviews taking place in a hospital in French-speaking Switzerland, during which CPR was discussed. Data were analysed in French with thematic and conversation analysis, and the extracts used for publication were translated into English. RESULTS: Mean patient age was 83.7 years; 53.5% were admitted for rehabilitation after surgery or traumatism. CPR was explained in 53.8% of the conversations. Most explanations were brief and concerned the technical procedures, mentioning only rarely potential outcome. With one exception, medical indication and prognosis of CPR did not feature in these explanations. Explanations occurred either before the patient's answer (as part of the question about CPR preferences) or after the patient's answer, generated by patients' indecision, misunderstanding and by the need to clarify answers. DISCUSSION AND CONCLUSIONS: The scarcity and simplicity of CPR explanations highlight a reluctance to have in-depth discussions and reflect the assumption that CPR does not need explaining. Providing patients with accurate information about the outcomes and risks of CPR is incremental for reaching informed decisions and patient-centred care. PATIENT CONTRIBUTION: Patients were involved in the data collection stage of the study.

[Content of discussions about cardiopulmonary resuscitation with elderly patients]. / Contenu des discussions concernant la réanimation cardiopulmonaire avec les patients âgés.

Openly talking with caregivers and physicians about medical decisions to prolong life, such as cardiopulmonary resuscitation, offers patients the opportunity to ensure that these decisions will be in line with their values and expectations, and thereby promote their autonomy and responsibility in health care. In order to support -informed and shared decision-making, it is important to share with the patient relevant information concerning their life-threatening condition (including risks of cardiac arrest, risks associated with the resuscitation procedure, immediate and long-term survival, and the impact of the procedure on quality of life), and encourage a -holistic discussion of the goals of care.

Le fait de discuter ouvertement avec leur médecin des décisions médicales concernant la prolongation de la vie, telle la réani­mation cardiopulmonaire, permet aux patients d'être rassurés sur le fait que ces décisions seront en conformité avec leurs ­valeurs et leurs attentes ; ceci favorise ainsi leur autonomie et leur responsabilité dans le projet de soins. Afin de soutenir une prise de décision informée et partagée, il est important de partager avec le patient les informations pertinentes par rapport à son pronostic vital (y compris les risques de subir un arrêt cardiaque, les risques associés à la procédure de réanimation, les chances de survie immédiate et à long terme, et l'impact de la procédure sur la qualité de vie), et d'encourager une discussion globale sur les objectifs des soins.

Validation of the French Version of the Integrated Palliative Care Outcome Scale.

CONTEXT: The Integrated Palliative care Outcome Scale (IPOS) is a widely used tool for assessing patient needs in palliative care. OBJECTIVES: The aim of this study was to provide a validated version of the patient and staff IPOS for French-speaking Switzerland (IPOS-Fr) and assess its psychometric properties. METHODS: The validation took place in 12 palliative care units and mobile teams. At baseline (T1) and three days later (T2), patients' general health status, palliative care needs (IPOS-Fr), and quality of life (McGill Quality of Life Scale-Revised) were assessed by patients and staff. RESULTS: We included 173 patients (mean age: 68.8; 92 women; 85% oncologic disease). IPOS internal consistency was high for the total score (0.69 and 0.71). Staff-patient interrater agreement was good to moderate for 13 items (intraclass correlations >0.516). Results indicated strong correlations between IPOS-Fr and McGill Quality of Life Scale-Revised for the total score (-0.623 at T1) and the psychological domain (Item 11: -0.601 at T1; Item 13: -0.633 at T2). Regarding sensitivity to change, there was a significant difference between T1 and T2 for patients with an improved health condition (z = -2.326; P = 0.020). CONCLUSION: IPOS-Fr has fair to good validity, especially with regard to interrater agreement and construct validity, is sensitive to positive change, and has good interpretability and acceptability for patients and staff. IPOS-Fr is not optimal in terms of internal consistency and structure when using subscale scores, except for the emotional subscale.

Challenges in a six-phase process of questionnaire adaptation: findings from the French translation of the Integrated Palliative care Outcome Scale.

BACKGROUND: The Integrated Palliative care Outcome Scale (IPOS) was developed for evaluating essential outcomes for palliative care patients. Our objectives here are to describe the process of a six-phase cross-cultural adaptation of IPOS to French (IPOS-Fr), highlight the difficulties encountered and strategies to solve them, and discuss the implications that adaptation may have on the validity and reliability of a questionnaire. METHODS: The adaptation of IPOS consisted of six phases: (i) literature review and interviews with target population; (ii) forward translation to French; (iii) backward translation to English; (iv) Expert Review; (v) cognitive interviews with target population; (vi) final review. RESULTS: Translation, cognitive interviews, and exchanges with Expert Review members allowed to make changes adapted to the target language regarding item 5 ("vomiting") and 8 ("sore or dry mouth"), and to identify and address, in the original version of IPOS, syntactic inconsistencies in language used in items 11 to 15 and methodological problems with items 11 ("anxiety about treatment and illness"), 15 ("share … as much as you wanted") and 17 ("problems addressed"). The adaptation also indicated that patients might have difficulties in interpreting items 8 ("sore or dry mouth"), 10 ("poor mobility"), 11 ("anxiety"), 12 (projected feelings of family and friends), and 14 ("feeling at peace"), thus indicating the need of monitoring during the psychometric validation. CONCLUSIONS: Following this process, IPOS-Fr has proved content and face validity. In our case, the adaptation allowed adjustments to be made to the questionnaire and, when this was not possible, highlighted potential biases and inconsistencies during the validation. The result relied on an intertwined and iterative process of seeking and reaching semantic, conceptual, and normative equivalence. We are now assessing the psychometrical properties of IPOS-Fr.

Surgery nurses' telephone communication: a mixed methods study with a special focus on newcomers' calls.

Aims: The aim of this study was (i) to document the main features of surgery nurses' telephone calls, with a special focus on newcomers' calls; and (ii) to identify the main activities accomplished during the newcomers' calls. Design: Mixed methods study. Methods: We audio recorded telephone calls internal to the hospital in two surgery nursing stations. We performed statistical descriptive analysis of the total collection of calls and of those specifically involving the newcomers and compared both sets. We also performed conversation analysis-based coding of the main activities accomplished during newcomers' calls. Results: Surgery nurses' telephone calls are extremely brief, predominantly nurse initiated and take place with a wide range of interlocutors who, for the most part, use mobile phones. The newcomers' calls are only slightly longer, take place with a more limited, but still wide, range of interlocutors and are even more often nurse initiated. The main activities of newcomers' calls are requests and activities related to connecting relevant interlocutors.

[Resuscitation of elderly people : how to approach their preferences in advance]. / Réanimation des personnes âgées : comment aborder les preferences en amont ?

Cardiopulmonary resuscitation (CPR) is a medical intervention whose practice is highly regulated. In Switzerland, when dealing with elderly patients, physicians decide whether resuscitation would be medically indicated in the case of a cardiorespiratory arrest and discuss it with the patient. The quality of the information provided by the physician during the first encounter with the patient may influence the latter's preferences. However, many studies emphasize the difficulties that hospital physicians face when engaging in this conversation. In order to promote a care provision that is both adequate and respectful of elderly patients, more attention should be devoted to the obstacles that hinder communication on this subject and to the resources available to physicians.

La réanimation cardiopulmonaire est une intervention médicale dont les techniques sont hautement régulées. En Suisse, dès le premier jour d'hospitalisation des patients âgés, les médecins établissent l'indication médicale à la réanimation dans l'éventualité d'un arrêt cardiorespiratoire et en parlent avec le patient. La qualité des informations données par le médecin pendant le premier entretien lors de l'hospitalisation peut influencer les préférences du patient. Pourtant, de nombreuses études soulignent les difficultés qui s'imposent aux médecins hospitaliers s'engageant dans cette discussion. Afin de promouvoir une prise en charge adéquate et respectueuse des personnes âgées, il convient de s'intéresser de plus près aux obstacles qui entravent la communication à ce sujet et aux ressources (existantes et souhaitées) à disposition des médecins.