Choosing wisely at the end of life: the crucial role of medical indication.

At the end of life, several treatments are administered routinely that lack medical indication and may cause significant harm to patients. Examples include artificial hydration and oxygen therapy in the dying phase, as well as enteral nutrition in advanced dementia. Medical indication is defined as the appropriateness of a therapeutic or diagnostic measure in the patient's concrete clinical situation, in light of the best available evidence. The decision about the absence or presence of a medical indication is a core competence of physicians. They have no obligation to perform or even mention measures that are not indicated. The decision about medical indication is a clinical compound decision, composed of both a factual, evidence-based judgement and a value judgement, which should always be patient-centred. Acknowledging the crucial role of medical indication in clinical decision making in medicine generally and at the end of life specifically opens up ways of enhancing patient-physician communication by clarifying roles, responsibilities and competencies. This may facilitate preventing overtreatment, improving patient wellbeing, and realising the patients' goals of care

Ethical challenges in palliative sedation of adults: protocol for a systematic review of current clinical practice guidelines.

This study aims to identify the full spectrum of ethical challenges of all forms of palliative sedation for adults as presented in current clinical practice guidelines (CPGs) and to determine whether CPGs specify ethical challenges of this therapy for patients with cancer and non-cancer and, if so, how exactly they do this. To the best of our knowledge, no studies have yet investigated this topic. The purpose is purely descriptive; our aim is not to make any kind of normative judgements on these challenges. Nor is our aim to assess the quality of the CPGs. We will perform a systematic review of CPGs on palliative sedation for adults via five electronic databases, grey literature search tools, citation tracking and contact with palliative care experts. Current CPGs accredited by an international, national or regional authority, published in English, German, French, Italian or Polish, from 2000 to the date of the search, will be subjected to content analysis at the textual, linguistic and thematic levels. This is a protocol for a systematic review and no human will be involved in this research. Therefore, ethics approval and consent to participate are not applicable to this context. This study protocol is reported in accordance with the Preferred Reporting Items for Systematic Review and Meta-Analysis for Protocols criteria and registered on PROSPERO. Moreover, the integral version of this study protocol is published as a preprint on Research Square. The results of this study will be actively disseminated through peer-reviewed journals and books, international, national and local conference presentations, social media and media in general

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

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. 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). 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. 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. 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

Pediatric advance care planning from the perspective of health care professionals: a qualitative interview study.

BACKGROUND: Pediatric advance care planning differs from the adult setting in several aspects, including patients' diagnoses, minor age, and questionable capacity to consent. So far, research has largely neglected the professionals' perspective. AIM: We aimed to investigate the attitudes and needs of health care professionals with regard to pediatric advance care planning. DESIGN: This is a qualitative interview study with experts in pediatric end-of-life care. A qualitative content analysis was performed. SETTING/PARTICIPANTS: We conducted 17 semi-structured interviews with health care professionals caring for severely ill children/adolescents, from different professions, care settings, and institutions. RESULTS: Perceived problems with pediatric advance care planning relate to professionals' discomfort and uncertainty regarding end-of-life decisions and advance directives. Conflicts may arise between physicians and non-medical care providers because both avoid taking responsibility for treatment limitations according to a minor's advance directive. Nevertheless, pediatric advance care planning is perceived as helpful by providing an action plan for everyone and ensuring that patient/parent wishes are respected. Important requirements for pediatric advance care planning were identified as follows: repeated discussions and shared decision-making with the family, a qualified facilitator who ensures continuity throughout the whole process, multi-professional conferences, as well as professional education on advance care planning. CONCLUSION: Despite a perceived need for pediatric advance care planning, several barriers to its implementation were identified. The results remain to be verified in a larger cohort of health care professionals. Future research should focus on developing and testing strategies for overcoming the existing barriers

"Hope for the best, prepare for the worst": A qualitative interview study on parents' needs and fears in pediatric advance care planning.

Pediatric advance care planning is advocated by healthcare providers because it may increase the chance that patient and/or parent wishes are respected and thus improve end-of-life care. However, since end-of-life decisions for children are particularly difficult and charged with emotions, physicians are often afraid of addressing pediatric advance care planning. We aimed to investigate parents' views and needs regarding pediatric advance care planning. We performed a qualitative interview study with parents of children who had died from a severe illness. The interviews were analyzed by descriptive and evaluation coding according to Saldaña. We conducted semi-structured interviews with 11 parents of 9 children. Maximum variation was sought regarding the child's illness, age at death, care setting, and parent gender. Parents find it difficult to engage in pediatric advance care planning but consider it important. They argue for a sensitive, individualized, and gradual approach. Hope and quality of life issues are primary. Parents have many non-medical concerns that they want to discuss. Written advance directives are considered less important, but medical emergency plans are viewed as necessary in particular cases. Continuity of care and information should be improved through regular pediatric advance care planning meetings with the various care providers. Parents emphasize the importance of a continuous contact person to facilitate pediatric advance care planning. Despite a need for pediatric advance care planning, it is perceived as challenging. Needs-adjusted content and process and continuity of communication should be a main focus in pediatric advance care planning. Future research should focus on strategies that facilitate parent engagement in pediatric advance care planning to increase the benefit for the families

Medical indication regarding life-sustaining treatment for children: Focus groups with clinicians.

Decisions about medical indication are a relevant problem in pediatrics. Difficulties arise from the high prognostic uncertainty, the decisional incapacity of many children, the importance of the family, and conflicts with parents. The objectivity of judgments about medical indication has been questioned. Yet, little is known about the factors pediatricians actually include in their decisions. Our aims were to investigate which factors pediatricians apply in deciding about medical indication, and how they manage conflicts with parents. We performed a qualitative focus group study with experienced pediatricians. The transcripts were subjected to qualitative content analysis. We conducted three focus groups with pediatricians from different specialties caring for severely ill children/adolescents. They discussed life-sustaining treatment in two case scenarios that varied according to diagnosis, age, and gender. The decisions about medical indication were based on considerations relating to the individual patient, to the family, and to other patients. Individual patient factors included clinical aspects and benefit-burden considerations. Physicians' individual views and feelings influenced their decision-making. Different factors were applied or weighed differently in the two cases. In case of conflict with parents, physicians preferred solutions aimed at establishing consensus. The pediatricians defined medical indication on a case-by-case basis and were influenced by emotional reasoning. In contrast to prevailing ethico-legal principles, they included the interests of other persons in their decisions. Decision-making strategies should incorporate explicit discussions of social aspects and physicians' feelings to improve the transparency of the decision-making process and reduce bias

"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

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