An entrustment model of consent for surgical treatment of life-threatening illness: Perspective of patients requiring esophagectomy

McKneally, Martin F.; Martin, Douglas K.

doi:10.1067/mtc.2000.106525

Cited by 79 publications

(69 citation statements)

References 15 publications

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“…28 Patient acceptance of passive decision-making in cancer care might be reflective of their limited medical knowledge and general trust in medical expertise. 27,28 This exemplifies the concept of "entrustment" described by McKneally and colleagues, 32 who interviewed patients after major surgery. The patients they interviewed rejected the concept of weighing risks and benefits and other processes aimed to maximize their autonomy.…”

Section: Discussionmentioning

confidence: 99%

Understanding the complexities of shared decision-making in cancer: a qualitative study of the perspectives of patients undergoing colorectal surgery

Hirpara¹,

Cleghorn²,

Sockalingam³

et al. 2016

cjs

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Background: Decisions leading up to surgery are fraught with uncertainty owing to trade-offs between treatment effectiveness and quality of life. Past studies on shared decision-making (SDM) have focused on the physician-patient encounter, with little emphasis on familial and cultural factors. The literature is scarce in surgical oncology, with few studies using qualitative interviews. Our objective was to explore the complexities of SDM within the setting of colorectal cancer (CRC) surgery. Methods:An interdisciplinary team developed a semistructured questionnaire. Telephone interviews were conducted with CRC patients in the practice of 1 surgical oncologist. Data saturation was achieved and a descriptive thematic analysis was performed. Results:We interviewed 20 patients before achieving data saturation. Three major themes emerged. First, family was considered as a crucial adjunct to the patientprovider dyad. Second, patients identified several facilitators to SDM, including a robust social support system and a competent surgical team. Although language was a perceived barrier, there was no difference in level of involvement in care between patients who spoke English fluently and those who did not. Finally, patients perceived a lack of choice and control in decision-making, thus challenging the very notion of SDM. Conclusion:Surgeons must learn to appreciate the role of family as a vital addition to the patient-provider dyad. Family engagement is crucial for CRC patients, particularly those undergoing surgical resection of late-stage disease. Surgeons must be aware of the uniqueness of decision-making in this context to empower patients and families.Contexte : Le choix de subir une chirurgie est toujours source d'incertitude en raison du fragile équilibre entre l'efficacité du traitement et la qualité de vie. Les études anté-rieures sur la prise de décision partagée se sont concentrées sur la relation médecin-patient; on a accordé peu d'importance aux facteurs familiaux et culturels qui entrent en jeu. En outre, la documentation scientifique ne foisonne pas d'études sur l'oncologie chirurgicale, et seules quelques données ont été recueillies au moyen d'entrevues qualitatives. Notre but était d'examiner les difficultés de la prise de déci-sion partagée dans le contexte d'une chirurgie pour un cancer colorectal.Méthodes : Une équipe interdisciplinaire a conçu un questionnaire semi-structuré au moyen duquel nous avons interviewé par téléphone des patients atteints d'un cancer colorectal et suivis par le même chirurgien oncologue. Nous avons atteint le seuil de saturation des données, puis réalisé une analyse thématique descriptive.Résultats : Pour atteindre la saturation, nous avons interrogé 20 patients. Trois thèmes principaux sont ressortis. D'abord, la famille était considérée comme un précieux ajout au tandem patient-médecin. Ensuite, les patients ont énuméré quelques éléments qui facilitent la prise de décision partagée, notamment la présence d'un bon réseau de soutien social et d'une équipe de professionne...

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Section: Discussionmentioning

confidence: 99%

Understanding the complexities of shared decision-making in cancer: a qualitative study of the perspectives of patients undergoing colorectal surgery

Hirpara¹,

Cleghorn²,

Sockalingam³

et al. 2016

cjs

View full text Add to dashboard Cite

show abstract

“…Indeed, qualitative research suggests that patients and physicians view the consent process primarily as a tool for building trust rather than as a technique for decisionmaking. 34,35 However, a discussion with the goal of building trust would not necessarily look the same as a discussion with the goal of decision-making.…”

Section: Physicians Meeting Minimal Standardsmentioning

confidence: 99%

“…40,41 Furthermore, when pa tients were asked what was most important about the in formed consent process, their responses focused less on decision -making and more on building the trust needed to allow them to make a "leap of faith" to a surgeon's care. 34,35 For this reason, critics contend that rather than protecting patients' rights to make decisions as they see fit, informed consent paradoxically mandates that patients make decisions and exercise autonomy in a manner that may be contrary to their preferences and foreign to their experiences.…”

Section: Patient Autonomymentioning

confidence: 99%

“…[29][30][31][32][33] Still others may base their decisions on something other than risks and benefits (e.g., the hospital's reputation or patients' subjective assessments of surgeons' commitment to "care" for them). 34,35 Even when patients do deliberate over their decisions, the social forces inherent to the health care system can undermine the effectiveness of informed consent. In a qualitative study involving women consenting to gynecological procedures, several patients described feeling compelled to sign the consent form despite their firm preference not to do so.…”

Section: Patient Comprehensionmentioning

confidence: 99%

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Informed consent for clinical treatment: Figure 1:

Hall¹,

Prochazka²,

Fink³

2012

CMAJ

266

216

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“…These children may have assumed that their parents were choosing transplantation instead of another treatment, and therefore the parents were in part responsible for the outcome. (19) 19 (18) 5 (5) There have been other reports of parents' perceived lack of choice [12] and reliance on the physician's recommendation [13,14]. Studies of shared decision-making have found that certain classes of patients do not wish to participate in the decision: those with more serious and life-threatening illnesses [15,16], those for whom there are no alternative treatments [17], or those for whom evidence is lacking for the next treatment [18].…”

Section: Discussionmentioning

confidence: 99%

Shared Decision-Making in Pediatric Allogeneic Blood and Marrow Transplantation: What If There Is No Decision to Make?

Pentz¹,

Pelletier

Alderfer

et al. 2012

The Oncologist

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Learning Objectives: After completing this course, the reader will be able to: When the alternative to medical treatment is likely death, ask parents and children whether they agree to the medical plan rather than suggesting they are sharing in “a decision.” Use the model of shared decision in appropriate settings, that is, those in which a bona fide choice exists. This article is available for continuing medical education credit at http://CME.TheOncologist.com Introduction. Shared decision‐making between health care professionals, patients, parents, and guardians is widely recommended today. However, it is unclear what happens when collaborative language is used by physicians in clinical situations for which patients and parents/guardians believe there is no decision to be made. Methods. We conducted a qualitative study of decision‐making for pediatric allogeneic blood and marrow transplantation by interviewing patients, parents, grandparents, donor siblings, and nondonor children after the decision to proceed to transplant but before the transplantation. Each interview was audio recorded, transcribed, and coded for major themes. Results. In total, 107 members of 30 families at four sites were interviewed, including 15 patients, 22 mothers, 2 stepmothers, 1 grandmother, 19 fathers, 3 stepfathers, 1 grandfather, 13 sibling donors, and 31 nondonor children (siblings, half‐siblings, and cousins). In all, 81% of parents/guardians, 73% of patients, 31% of donors, and 29% of other children reported there was no decision to be made. Almost all (88%) parents/guardians indicated that the physician's recommendation was a large determinant in their agreement to go forward with the transplantation. All parents/guardians reported that “agreeing to a plan” was a better description of what their consent entailed. Conclusions. To be respectful of patients and parents/guardians, we suggest that “agreeing to a plan” may be a better description for what parents/guardians must consider when the alternative to a transplantation is likely death. In this clinical context, the shared decision‐making model with a focus on “a decision to be made” may be misleading.

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An entrustment model of consent for surgical treatment of life-threatening illness: Perspective of patients requiring esophagectomy

Cited by 79 publications

References 15 publications

Understanding the complexities of shared decision-making in cancer: a qualitative study of the perspectives of patients undergoing colorectal surgery

Understanding the complexities of shared decision-making in cancer: a qualitative study of the perspectives of patients undergoing colorectal surgery

Informed consent for clinical treatment: Figure 1:

Shared Decision-Making in Pediatric Allogeneic Blood and Marrow Transplantation: What If There Is No Decision to Make?

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