Navigating end-of-life decision-making in nursing: a systematic review of ethical challenges and palliative care practices
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ABSTRACT:
SUBMITTER: Alanazi M
PROVIDER: S-EPMC11232160 | biostudies-literature | 2024 Jan
REPOSITORIES: biostudies-literature
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Project description:Palliative sedation (PS) is the use of medications to induce decreased or absent awareness in order to relieve otherwise intractable suffering at the end of life. Although uncommon, some patients undergoing aggressive symptom control measures still have severe suffering from underlying disease or therapy-related adverse effects. In these circumstances, use of PS is considered. Although the goal is to provide relief in an ethically acceptable way to the patient, family, and health care team, health care professionals often voice concerns whether such treatment is necessary or whether such treatment equates to physician-assisted suicide or euthanasia. In this review, we frame clinical scenarios in which PS may be considered, summarize the ethical underpinnings of the practice, and further differentiate PS from other forms of end-of-life care, including withholding and/or withdrawing life-sustaining therapy and physician-assisted suicide and euthanasia.
| S-EPMC2947968 | biostudies-literature
Project description:BackgroundCharacteristics of the physician influence the essential decision-making in end-of-life care. However, the effect of special education in palliative medicine on different aspects of decision-making in end-of-life care remains unknown. The aim of this study was to explore the decision-making in end-of-life care among physicians with or without special competency in palliative medicine (cPM).MethodsA questionnaire including an advanced lung cancer patient-scenario with multiple decision options in end-of-life care situation was sent to 1327 Finnish physicians. Decisions to withdraw or withhold ten life-prolonging interventions were asked on a scale from 1 (definitely would not) to 5 (definitely would) - first, without additional information and then after the family's request for aggressive treatment and the availability of an advance directive. Values from chronological original scenario, family's appeal and advance directive were clustered by trajectory analysis.ResultsWe received 699 (53%) responses. The mean values of the ten answers in the original scenario were 4.1 in physicians with cPM, 3.4 in general practitioners, 3.4 in surgeons, 3.5 in internists and 3.8 in oncologists (p < 0.05 for physicians with cPM vs. oncologists and p < 0.001 for physicians with cPM vs. others). Younger age and not being an oncologist or not having cPM increased aggressive treatment decisions in multivariable logistic regression analysis. The less aggressive approach of physicians with cPM differed between therapies, being most striking concerning intravenous hydration, nasogastric tube and blood transfusions. The aggressive approach increased by the family's request (p < 0.001) and decreased by an advance directive (p < 0.001) in all physicians, regardless of special education in palliative medicine.ConclusionPhysicians with special education in palliative medicine make less aggressive decisions in end-of-life care. The impact of specialty on decision-making varies among treatment options. Education in end-of-life care decision-making should be mandatory for young physicians and those in specialty training.
| S-EPMC6052558 | biostudies-literature
Project description:ImportanceAttitudes toward end-of-life decision-making in neonatology have been studied in physicians and other health care professionals and are mostly shaped by their clinical education and work experiences. In contrast, attitudes among the general public have not yet been investigated.ObjectiveTo assess (1) attitudes in the general public toward euthanasia and withdrawal of life-prolonging treatment in neonates with severe life-limiting conditions, (2) knowledge of current German recommendations, and (3) values in the German society regarding ethical issues and proxy decisions at the beginning of life.Design, setting, and participantsThis cross-sectional study was performed in Germany and used an exploratory design to analyze responses to an interview conducted by an independent, established commissioned polling institute in March and April 2022. Participants were 16 years or older, with German language fluency and comprehension and living in Germany.Main outcomes and measuresKnowledge about recommendations for euthanasia and withdrawal of life-prolonging treatment as well as personal attitudes toward (1) euthanasia and withdrawal of life-prolonging treatment and (2) surrogate end-of-life decision-making for newborn infants were assessed.ResultsThe study included 2116 participants (1077 females [50.9%]; mean [SD] age 52.1 [18.7] years). Of the participants, 16.8% (311 of 1851) reported knowing the German recommendations for euthanasia and withdrawal of life-prolonging treatment for neonates. Euthanasia and withdrawal of life-prolonging treatment were supported by 64.7% (1369 of 2116) and 77.9% (1649 of 2116) of respondents, respectively. Shared decision-making between parents and physicians for neonates in end-of-life situations was supported by 65.6% of participants (1388). In situations where shared decision-making was not possible, 73.4% of respondents (1019 of 1388) put the ultimate decision to the parents. The magnitude of the associations was low between sociodemographic factors and views on ethical issues and customary practices involved in end-of-life decisions for neonates.Conclusions and relevanceResults of this cross-sectional study suggested that most respondents were not aware of the national German recommendations for euthanasia and withdrawal of life-prolonging treatment for sick and extremely preterm newborns. When counseling parents of periviable newborns, clinicians may need to exert more effort in explaining the legal and ethical framework; a highly individualized approach is warranted.
| S-EPMC10811557 | biostudies-literature
Project description:BackgroundNursing ethical decision-making ability is a core competency of nurses. However, no tool has been developed to measure the ethical decision-making ability of nurses in China. Therefore, we aimed to develop a nursing ethical decision-making ability scale (EDMAS) and assess its validity and reliability.MethodsA literature review, qualitative study, and the Delphi method were employed to identify the most common ethical dilemmas and original scale items. A cross-sectional study was conducted to evaluate the items. The reliability and validity of the scale were evaluated. Exploratory factor analysis (EFA) was employed to investigate the factor structure based on data from group 1 (N = 404). Confirmatory factor analysis (CFA) was employed to assess the construct validity based on the data from group 2 (N = 503). Convergent validity was evaluated using composite reliability (CR) and average variance extracted (AVE). Discriminant validity was assessed by analyzing the maximum shared variance (MSV). We invited 15 experts to evaluate the content validity of the EDMAS. This study was conducted between December 2021 and January 2023.ResultsWe defined 4 nursing ethical dilemmas and 71 original items. We deleted 4 items during the screening process. Additionally, 3 items were deleted from the EFA. The EFA revealed that the EDMAS with 64 items had a four-factor structure (ethical sensitivity, motivation, judgment, and action), accounting for 56.05% of the total variance. The CFA revealed that χ2/df = 1.291, RMSEA = 0.024, CFI = 0.976, TLI = 0.974, NFI = 0.902, and IFI = 0.976. The CR values were between 0.945 and 0.964. The AVE values were between 0.583 and 0.588. The MSV values were between 0.533 and 0.572. The value of I-CVI varied from 0.867 to 1.000, and the S-CVI/Ave was 0.965. The Cronbach's of the scale was 0.982. The test-retest reliability of the EDMAS was 0.982.ConclusionEDMAS is a reliable and valid tool for evaluating nurses' ethical decision-making ability and enhancing its ability through ethics training programs.
| S-EPMC11907825 | biostudies-literature
Project description:BackgroundThe swift advancement of intensive care medicine, coupled with technological possibilities, has prompted numerous ethical inquiries regarding decision-making processes concerning the withholding or withdrawal of treatment due to medical futility. This study seeks to delineate the decision-making approaches employed by intensive care physicians in Türkiye when faced with medical futility at the end of life, along with an ethical evaluation of these practices.MethodsGrounded theory, a qualitative analysis method was employed, conducting semi-structured, in-depth interviews with eleven intensive care physicians in Türkiye. The subsequent text analysis was carried out using MAXQDA software.ResultsParticipants assert that the decisions made by Turkish physicians determine whether treatment is futile, rely on medical consensus, and lack a standardized decision-making process. The decisions are influenced by legal and social pressures, resource constraints, and occasional conflicts of interest. The significance of professional hierarchy is notable, with limited consideration given to the opinions of nurses and other staff. The unstructured medical consensus processes are shaped by normative concepts such as benefit, age, justice, and conscience. Furthermore, it was observed that the conscientious opinions of physicians carry more weight than adherence to ethical principles and guidelines.ConclusionTo create optimal conditions for doctors to make ethically justifiable decisions, the dynamics within the treatment team should be improved, emphasizing the minimization of hierarchy, and ensuring the active participation of all team members in the decision-making process. Additionally, efforts should be directed toward narrowing the gap between the conscience of the individual doctor and established ethical principles. A potential solution lies in the nationwide implementation of clinical ethics committees and the establishing of clinical ethics guidelines, aiming to address, and overcome the identified challenges.
| S-EPMC11529328 | biostudies-literature
Project description:BackgroundDelivering high quality, patient- and family-centered care depends upon high quality end-of-life and palliative care (EOLPC) research. Engaging patients and families as advisors, partners, or co-investigators throughout the research lifecycle is widely regarded as critical to ensuring high quality research. Engagement is not only an ethical obligation, it also raises ethical challenges of its own. We conducted a qualitative study to understand ethical challenges and potential solutions when engaging patients and families in EOLPC research.MethodsWe recruited and interviewed 20 clinical investigators and 22 patients or family caregivers through the Palliative Care Research Cooperative Group (PCRC). Interview transcripts were analyzed using constructivist grounded theory methodology. Analysis sought to identify ethical challenges and potential solutions, as well as to synthesize findings into practical recommendations tailored to engaging patients and families in EOLPC research.ResultsOur study identified 8 ethical challenges considered unique to the EOLPC research context and 11 potential solutions to these challenges. The most frequently described ethical challenges included the need to minimize burdens of engagement for patients and caregivers, challenges of dealing with death and illness, and paternalism or "gatekeeping" (i.e., withholding the opportunity to participate from patients or caregivers). Investigators and patients or family caregivers conceptualized ethics challenges differently; several issues appeared to fall outside a traditional research ethics paradigm and more into the ethics of relationships. We synthesized these findings into 4 practical recommendations hypothesized to support authentic engagement.ConclusionsEngaging patients and families in EOLPC research can raise unique ethical challenges. These challenges can be overcome to empower participation, minimize the unique burdens of EOLPC, and promote diversity. Whereas traditional research ethics tend to emphasize protecting research participants who may be vulnerable, an ethics approach based on authentic engagement that explores what it means for investigators and patients or family caregivers to be in a relationship may be needed. Future research is needed to explore this approach and test these recommendations in practice.
| S-EPMC9108140 | biostudies-literature
Project description:BackgroundEvidence of the ethical appropriateness and clinical benefits of shared decision-making (SDM) are accumulating. This study aimed to not only identify physicians' perspectives on SDM, and practices related to end-of-life care in particular, but also to gauge the effect of SDM education on physicians in Korea.MethodsA 14-item questionnaire survey using a modified Delphi process was delivered to nephrologists and internal medicine trainees at 17 university hospitals.ResultsA total of 309 physicians completed the survey. Although respondents reported that 69.9% of their practical decisions were made using SDM, 59.9% reported that it is not being applied appropriately. Only 12.3% of respondents had received education on SDM as part of their training. The main obstacles to appropriate SDM were identified as lack of time (46.0%), educational materials and tools (29.4%), and education on SDM (24.3%). Although only a few respondents had received training on SDM, the proportion of those who thought they were using SDM appropriately in actual practice was high; the proportion of those who chose lack of time and education as factors that hindered the proper application of SDM was low.ConclusionThe majority of respondents believed that SDM was not being implemented properly in Korea, despite its use in actual practice. To improve the effectiveness of SDM in the Korean medical system, appropriate training programs and supplemental policies that guarantee sufficient application time are required.
| S-EPMC8995478 | biostudies-literature
Project description:BackgroundIn recent years, human microbiome research has flourished and has drawn attention from both healthcare professionals and general consumers as the human microbiome is now recognized as having a significant influence on human health. This has led to the emergence of companies offering microbiome testing services. Some of these services are sold directly to the consumer via companies' websites or via medical laboratory websites.MethodologyIn order to provide an overview of the consumer experience proposed by these microbiome testing services, one single faecal sample was sent to six different companies (five based in Europe and one based in the USA). Two out of the six testing kits were commercialized by medical laboratories, but without any requirement for a medical prescription. The analyses and reports received were discussed with a panel of experts (21 experts from 8 countries) during an online workshop.ResultsThis workshop led to the identification of several limitations and challenges related to these kits, including over-promising messages from the companies, a lack of transparency in the methodology used for the analysis and a lack of reliability of the results. The experts considered the interpretations and recommendations provided in the different reports to be premature due to the lack of robust scientific evidence and the analyses associated with the reports to be of limited clinical utility. The experts also discussed the grey areas surrounding the regulatory status of these test kits, including their positioning in the European market. The experts recommended a distinction between regulatory requirements based on the intended use or purpose of the kit: on the one hand, test kits developed to satisfy consumer curiosity, with a clear mention of this objective, and no mention of any disease or risk of disease, and on the other hand, in vitro diagnostic (IVD) CE-marked test kits, which could go deeper into the analysis and interpretation of samples, as such a report would be intended for trained healthcare professionals.ConclusionsRecommendations or actions, specific to the context of use of microbiome testing kits, are listed to improve the quality and the robustness of these test kits to meet expectations of end users (consumers, patients and healthcare professionals). The need for standardization, robust scientific evidence, qualification of microbiome-based biomarkers and a clear regulatory status in Europe are the main issues that will require attention in the near future to align laboratory development with societal needs and thus foster translation into daily health practice.
| S-EPMC11657758 | biostudies-literature
Project description:BackgroundAlthough surgery is the gold standard following a hip fracture, the potential for rehabilitation and survival rates are low in frail older patients. Some patients may derive more benefit from palliative care. The objectives of this review were to identify the available strategies to improve end-of-life decision-making and palliative care for frail patients with hip fractures and to synthetise their level of support.MethodsWe conducted a scoping review of the scientific and grey literature, searching seven databases and websites of associations. We included all study designs, expert opinion articles and clinical practice guidelines (CPGs). Data were synthetised according to the Approach to Patient with Limited Life Expectancy and Hip Fracture framework. The number of research items and their level of evidence were tabulated for each of the recommended strategies.ResultsOf the 10 591 items identified, 34 were eligible. The majority of included articles were original research studies (n = 15). Half of the articles and CPGs focused on intervention categories (55%) such as goals of care discussion and comfort care, followed by factors to consider in the end-of-life decision-making process (25%) and prognosis assessments (20%), mainly through the estimation of life expectancy. The level of evidence for these strategies remains low, given the limited number of prospective studies supporting them.ConclusionsThis scoping review highlighted that end-of-life care in frail older patients with a hip fracture remains understudied. The strategies identified could be prioritised for future research to improve the well-being of the target population while promoting sustainable resource management.
| S-EPMC11227115 | biostudies-literature
Project description:BackgroundFraming is known to influence decision making.ObjectiveThe study objective was to describe language used by physicians when discussing treatment options with a critically and terminally ill elder.MethodsHigh-fidelity simulation was used, involving an elder with end-stage cancer and life-threatening hypoxia, followed by a debriefing interview. Subjects were hospitalist, emergency medicine, and critical care physicians from three academic medical centers. Measures were observation of encounters in real time followed by content analysis of simulation and debriefing interview transcripts. During the simulation we identified the first mention ("broaching") of principal treatment options--intubation and mechanical ventilation (life-sustaining treatment [LST]) and palliation in anticipation of death (palliation)--and used constant comparative methods to identify language used. We identified physician opinions about the use of LST in this clinical context during the debriefing interviews, and compared language used with opinions.ResultsAmong 114 physician subjects, 106 discussed LST, 86 discussed palliation, and 84 discussed both. We identified five frames: will (decided), must (necessary), should (convention), could (option), and ask (elicitation of preferences). Physicians broached LST differently than palliation (p<0.01), most commonly framing LST as necessary (53%), while framing palliation as optional (49%). Among physicians who framed LST as imperative (will or must), 16 (30%) felt intubation would be inappropriate in this clinical situation.ConclusionsIn this high-fidelity simulation experiment involving a critically and terminally ill elder, the majority of physicians framed the available options in ways implying LST was the expected or preferred choice. Framing of treatment options could influence ultimate treatment decisions.
| S-EPMC4696426 | biostudies-literature