scholarly journals Ethics of End of Life Decisions in Pediatrics: A Narrative Review of the Roles of Caregivers, Shared Decision-Making, and Patient Centered Values

2018 ◽  
Vol 8 (5) ◽  
pp. 42 ◽  
Author(s):  
Jonathan Santoro ◽  
Mariko Bennett
2018 ◽  
Vol 36 (1) ◽  
pp. 76-88 ◽  
Author(s):  
Dawon Baik ◽  
Hwayoung Cho ◽  
Ruth M. Masterson Creber

Background: Shared decision making (SDM) is a key attribute of patient-centered care, which empowers palliative care patients to be able to make optimal medical decisions about end-of-life treatments based on their own values and preferences. Aim: The aim of this systematic literature review is to detail and compare interventions supporting SDM over the last 10 years (January 2008 to December 2017) and to analyze patient/caregiver outcomes at the end of life. Methods: This review followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. PubMed, CINAHL, Embase, and Cochrane Library were searched with key search terms: SDM, decision aid, decision support, palliative care, and hospice care. The Mixed Methods Appraisal Tool was used to assess the quality of the included studies. Results: The initial search yielded 2705 articles, and 12 studies were included in the final review. The quality of the studies was modest and technology-enabled delivery modes (e.g., video, DVD, web-based tool) were most commonly used. Patient/caregiver knowledge of end-of-life care was the most common primary outcome across studies. The strength of the association between the SDM interventions and patient/caregiver outcomes varied. Conclusion: The findings from the studies that examined the effects of the SDM intervention on patient outcomes were inconsistent, highlighting the need for further SDM intervention studies among diverse patient populations using consistent measures. Given the availability of health technologies, future studies should focus on developing individual-tailored, technology-enabled interventions to support patient-centered medical decision making.


2014 ◽  
Vol 21 (1) ◽  
pp. 15-23 ◽  
Author(s):  
Helen Pryce ◽  
Amanda Hall

Shared decision-making (SDM), a component of patient-centered care, is the process in which the clinician and patient both participate in decision-making about treatment; information is shared between the parties and both agree with the decision. Shared decision-making is appropriate for health care conditions in which there is more than one evidence-based treatment or management option that have different benefits and risks. The patient's involvement ensures that the decisions regarding treatment are sensitive to the patient's values and preferences. Audiologic rehabilitation requires substantial behavior changes on the part of patients and includes benefits to their communication as well as compromises and potential risks. This article identifies the importance of shared decision-making in audiologic rehabilitation and the changes required to implement it effectively.


Animals ◽  
2021 ◽  
Vol 11 (4) ◽  
pp. 1114
Author(s):  
Katherine Littlewood ◽  
Ngaio Beausoleil ◽  
Kevin Stafford ◽  
Christine Stephens

Cats are the most common companion animals in New Zealand. Advances in veterinary care means that cats are living longer and there are many older cats. End-of-life decisions about cats are complicated by owner–cat relationships and other psychosocial factors. Our study explored the ways in which end-of-life decisions were being made by owners of older and chronically ill cats in New Zealand and the role of their veterinarian in the process. Qualitative data were gathered via retrospective semi-structured interviews with 14 cat owners using open-ended questions. Transcripts of these interviews were explored for themes using template analysis and nine themes were identified. Four were animal-centered themes: cat behavior change, pain was a bad sign, signs of ageing are not good, and the benefits of having other people see what owners often could not. Five were human-centered themes: veterinarians understanding owners’ relationships with their cat, normalizing death, the need for a good veterinarian to manage end of life, veterinary validation that owners were doing the right thing, and a strong desire to predict the time course and outcome for their cat. End-of-life decision making is complex, and the veterinarian’s role is often poorly defined. Our owners appreciated the expertise and validation that their veterinarian provided but continuity of care was important. Future research aimed at exploring the veterinarian’s perspective during end-of-life decision making for cats would be a valuable addition to the topic.


2021 ◽  
pp. JDNP-D-20-00078
Author(s):  
Sybilla Myers ◽  
Christopher Kennedy

BackgroundPerceived health-related quality of life (HRQOL) is fundamental to well-being and is a meaningful way to measure physical and mental health.Local ProblemNo standard method exists for measuring perceived HRQOL during the COVID-19 pandemic in participants as they attempt to improve their self-determined wellness goals. An implementation plan that considers the social distancing limitations imposed can be used to predict an individual’s likelihood of long-term success.MethodsDuring the four, 2-week plan-do-study-act (PDSA) cycles, the Social Cognitive Theory model informed the implementation of the four core interventions. To guide iterative changes, the data was analyzed through Excel and run charts.InterventionsThe four core interventions were the shared decision-making tool (SDMT), health mobile app tool (HMAT), wellness tracker tool (WTT), and the team engagement plan.ResultsAmong 28 participants, perceived quality of life increased by 70%, engagement in shared decision-making increased to 82%, app use and confidence increased to 85%, and goal attainment reached 81%.ConclusionsThe SDMT, health app, and wellness tracker created a methodical plan of accountability for increasing participant wellness. The contextual barrier of the COVID-19 pandemic added a negative wellness burden which was mitigated by creating a patient-centered culture of wellness.


2021 ◽  
pp. medethics-2020-106690
Author(s):  
Sarah Rosenwohl-Mack ◽  
Daniel Dohan ◽  
Thea Matthews ◽  
Jason Neil Batten ◽  
Elizabeth Dzeng

ObjectivesThe end of life is an ethically challenging time requiring complex decision-making. This study describes ethical frameworks among physician trainees, explores how these frameworks manifest and relates these frameworks to experiences delivering end-of-life care.DesignWe conducted semistructured in-depth exploratory qualitative interviews with physician trainees about experiences of end-of-life care and moral distress. We analysed the interviews using thematic analysis.SettingAcademic teaching hospitals in the United States and United Kingdom.ParticipantsWe interviewed 30 physician trainees. We purposefully sampled across three domains we expected to be associated with individual ethics (stage of training, gender and national healthcare context) in order to elicit a diversity of ethical and experiential perspectives.ResultsSome trainees subscribed to a best interest ethical framework, characterised by offering recommendations consistent with the patient’s goals and values, presenting only medically appropriate choices and supporting shared decision-making between the patient/family and medical team. Others endorsed an autonomy framework, characterised by presenting all technologically feasible choices, refraining from offering recommendations and prioritising the voice of patient/family as the decision-maker.ConclusionsThis study describes how physician trainees conceptualise their roles as being rooted in an autonomy or best interest framework. Physician trainees have limited clinical experience and decision-making autonomy and may have ethical frameworks that are dynamic and potentially highly influenced by experiences providing end-of-life care. A better understanding of how individual physicians’ ethical frameworks influences the care they give provides opportunities to improve patient communication and advance the role of shared decision-making to ensure goal-aligned end-of-life care.


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