764 What Do You Think? The Ethics of Treating the Medically and Socially Complicated Patient

2020 ◽  
Vol 41 (Supplement_1) ◽  
pp. S215-S216
Author(s):  
Monica L Gerrek ◽  
Marcie A Lambrix ◽  
Oliver Schirokauer ◽  
Tammy Coffee ◽  
Charles Yowler

Abstract Introduction Medically complicated burn patients also often present with complex social situations which raise difficult ethical questions for the providers caring for them. While the four principles of biomedical ethics, respect for autonomy, nonmaleficence, beneficence, and justice help guide medical decision making, providers are often faced with making recommendations that are ethically uncomfortable for them. Methods At the ABA Annual Meeting in 2019, we presented a poster of a case of a medically, socially, and ethically complicated patient who was treated at our verified burn unit about a decade ago. Embedded in the poster was a QR code and weblink that people could scan to get to a 10-item online survey containing questions regarding decision making in the case. For our regional burn conference in September 2019, we asked the organizers to send an email containing a summary of the case and a link to the survey via email to all of those who had registered two weeks before the conference. A summary of the case follows: 47-year-old male with an 81% TBSA burn from a car accident, currently intubated and sedated and unable to participate in medical decision making. He needs four limb amputations, though his chance of long-term survival is ultimately thought to be less than 10–20%; best case scenario is a vent-dependent life with tetraplegia, likely without prosthetics due to skin graft issues. He has a very complicated family situation. Survey questions included those about whether it was medically appropriate to do or not do the amputations, how that appropriateness should be assessed, the extent to which the patient’s previous expressed wishes matter, who the appropriate surrogate is, and whether and to what extent the medical team’s feelings about the situation matter. Results Twelve people at the ABA annual meeting and 17 people from the regional meeting responded to the survey. Every respondent answered every question. While there were some similar responses, there were also those with significant variation. Of note, at the ABA, 50% of respondents felt the evidence needed to withdraw treatment was the same as that needed to continue treatment; 70% of participants at the regional meeting thought this. 25% of respondents at the ABA thought it was extremely important that a decision be made that allows team members to sleep at night; 17.65% of participants at the regional meeting thought this. Conclusions Burn care providers do not agree on important aspects of decision making for patients who are medically, socially, and ethically complicated. Applicability of Research to Practice Further discussion of decision making in burn care is needed to help increase provider comfort in making recommendations for patients who are medically, socially, and ethically complicated.

2021 ◽  
Vol 42 (Supplement_1) ◽  
pp. S133-S134
Author(s):  
Monica L Gerrek ◽  
Marcie A Lambrix ◽  
Oliver Schirokauer ◽  
Tammy Coffee ◽  
Charles J Yowler

Abstract Introduction Medically complicated burn patients can present with complex social situations that lead to difficult ethical decision. While the four principles of biomedical ethics, viz., respect for autonomy, nonmaleficence, beneficence, and justice, offer guidance, they may not lead to a clear resolution. Instead, providers may be faced with making a recommendation that is ethically uncomfortable. Methods At the 2109 ABA Annual Meeting, we presented a poster of the following real-life case: Patient is a 47-year-old male who has an 81% TBSA burn, is intubated, and is unable to participate in medical decision making. He needs four limb amputations. His chance of long-term survival with amputation is less than 20%, and the best case scenario is a vent-dependent life with tetraplegia. His complicated family, which include his wife, ex-wife, children, and siblings, is unable to agree on what interventions should be provided. The poster included a QR code and a link, both of which took respondents to a 10-item survey. Later in 2019, we asked the organizers of our regional burn conference to email a case summary and a link to the same survey to registered participants. The survey addressed medical appropriateness and various factors that might affect decision making. Results We received responses from 12 attendees at the ABA Annual Meeting and 18 regional conference registrants. On the 8 questions for which only a single response was permitted, 64% of respondents on average chose the same answer. This number goes up to 72% if we restrict to the 5 questions with only two options. Though these numbers indicate a degree of consensus, they also reflect a notable lack of agreement. In fact, less than 77% of respondents agreed about the medical appropriateness of not amputating, the roles that quality of life and justice (resource allocation) should play in decision making, whether the level of evidence needed to withdraw treatment is the same as is needed to continue, how to handle the conflicting claims of family members, and the level of importance that should be attached to the team’s comfort. In the case of the last two issues, none of the 5 available responses for each question received more than a third of the votes. The only position unanimously endorsed on the survey was that comfort care should be an option for the patient/family. Conclusions Our data suggest that there is substantial disagreement among those involved in burn care regarding important aspects of decision making for a patient who is medically, socially, and ethically complicated.


2020 ◽  
Vol 11 (05) ◽  
pp. 764-768
Author(s):  
Karolin Ginting ◽  
Adrienne Stolfi ◽  
Jordan Wright ◽  
Abiodun Omoloja

Abstract Background Electronic health record (EHR) patient portals are a secure electronic method of communicating with health care providers. In addition to sending secure messages, images, and videos generated by families can be sent to providers securely. With the widespread use of smart phones, there has been an increase in patient-generated images (PGI) sent to providers via patient portals. There are few studies that have evaluated the role of PGI in medical decision-making. Objectives The study aimed to characterize PGI sent to providers via a patient portal, determine how often PGI-affected medical decision-making, and determine the rate of social PGI sent via patient portal. Methods A retrospective chart review of PGI uploaded to a children's hospital's ambulatory patient portal from January 2011 to December 2017 was conducted. Data collected included patient demographics, number and type of images sent, person sending images (patient or parent/guardian), and whether an image-affected medical decision-making. Images were classified as medical related (e.g., blood glucose readings and skin rashes), nonmedical or administrative related (e.g., medical clearance or insurance forms), and social (e.g., self-portraits and camp pictures). Results One hundred forty-three individuals used the portal a total of 358 times, sending 507 images over the study period. Mean (standard deviation) patient age was 9.5 (5.9) years, 50% were females, 89% were White, and 64% had private insurance. About 9% of images were sent directly by patients and the rest by parents/guardians. A total of 387 (76%) images were sent for medical related reasons, 20% for nonmedical, and 4% were deemed social images. Of the 387 medical related images, 314 (81%) affected medical decision-making. Conclusion PGI-affected medical decision-making in most cases. Additional studies are needed to characterize use of PGI in the pediatric population.


2020 ◽  
Vol 5 (2) ◽  
pp. 238146832094070
Author(s):  
Andrea Meisman ◽  
Nancy M. Daraiseh ◽  
Phil Minar ◽  
Marlee Saxe ◽  
Ellen A. Lipstein

Purpose. To understand the medical decision support needs specific to adolescents and young adults (AYAs) with ulcerative colitis (UC) and inform development of a decision support tool addressing AYAs’ preferences. Methods. We conducted focus groups with AYAs with UC and mentors from a pediatric inflammatory bowel disease clinic’s peer mentoring program. Focus groups were led by a single trained facilitator using a semistructured guide aimed at eliciting AYAs’ roles in medical decision making and perceived decision support needs. All focus groups were audio recorded, transcribed, and coded by the research team. Data were analyzed using content analysis and the immersion crystallization method. Results. The facilitator led six focus groups: one group with peer mentors aged 18 to 24 years, three groups with patients aged 14 to 17 years, and two groups with patients aged 18 to 24 years. Decision timing and those involved in decision making were identified as interacting components of treatment decision making. Treatment decisions by AYAs were further based on timing, location (inpatient v. outpatient), and family preference for making decisions during or outside of clinic. AYAs involved parents and health care providers in medical decisions, with older participants describing themselves as “final decision makers.” Knowledge and experience were facilitators identified to participating in medical decision making. Conclusions. AYAs with UC experience changes to their roles in medical decisions over time. The support needs identified will inform the development of strategies, such as decision support tools, to help AYAs with chronic conditions develop and use skills needed for participating in medical decision making.


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