The experiences and perspectives of family surrogate decision-makers: A systematic review of qualitative studies

Su, Ya; Yuki, Michiko; Hirayama, Kengo

doi:10.1016/j.pec.2019.12.011

Cited by 53 publications

(57 citation statements)

References 49 publications

Supporting

Mentioning

Contrasting

Unclassified

Order By: Relevance

“…Findings from this study, the themes of Involvement, Information, and Relationship in patient and provider experiences, reflect those in previous research exploring patient experiences in decision-making (Greene et al, 2019; Su et al, 2020), the constructs identified in Stacey et al’s (2010) analysis of SDM models, and Makoul and Clayman’s (2006) integrative model. These works identify interpersonal phenomena, transactional communication, mutual respect, information exchange, and control as constructs that theoretically ground shared decisions, and the concepts of knowledge, partnership, participation, negotiation, trust, and relationship as fundamental to SDM.…”

Section: Discussionsupporting

confidence: 78%

“…Most research exploring experiences with health care decision-making has involved patients (Edwards & Elwyn, 2006; Edwards et al, 2001; Entwistle et al, 2004; Greene et al, 2019; Moreau et al, 2012; Su et al, 2020; Verberne et al, 2019), but there is little research considering the provider experience (Elwyn et al, 2001; Ford et al, 2003; Friedberg et al, 2013), and these studies do not directly address the importance of the relationship between patient and provider in making health care decisions. The patient-provider relationship is an important element in any clinical interaction, and one that is proposed to be an indicator of effective decision-making, particularly in the context of patient-centered care delivery (Elwyn et al, 2001; Marteau et al, 2001; Melbourne et al, 2010; Simon et al, 2007; Truglio-Londrigan & Slyer, 2018).…”

mentioning

confidence: 99%

See 1 more Smart Citation

Patient and Provider Decision-Making Experiences: A Qualitative Study

2020

View full text Add to dashboard Cite

The purpose of this qualitative descriptive study was to explore patient and provider experiences in making health care decisions. A convenience sample of primary care patients and providers was engaged in face-to-face and telephone interviews, to elicit participants’ experiences in making health care decisions. Three main themes were identified in the data: Involvement, including being in control and accepting responsibility; seeking and confirming Information; and establishing communication and negotiating trust in the patient-provider Relationship. Themes identified in the data describe the elements involved in health care decision-making, and depict the relationship between patient and provider as being central to the making of health care decisions. In addition, the subthemes of control and negotiation merit additional in-depth exploration to illuminate the implicit and explicit expressions of hierarchy in the patient-provider relationship, as this hierarchy appears to hinder efforts at sharing decisions in health care encounters.

show abstract

Section: Discussionsupporting

confidence: 78%

mentioning

confidence: 99%

Patient and Provider Decision-Making Experiences: A Qualitative Study

2020

View full text Add to dashboard Cite

show abstract

“…Ethical conflict and decision‐making processes at the end of life can have a negative impact on nurses (McLennon et al, 2013; Pishgooie et al, 2019; C. Teixeira et al, 2014; Willmott et al, 2020). The effects on surrogates of decision‐making about treatment have been associated with substantial and long‐lasting negative emotions following this experience (Su et al, 2020; Wendler & Rid, 2011). In addition, the provision of end‐of‐life care is associated with depression, burnout, and post‐traumatic stress among clinicians and nurses working in intensive care units (Embriaco, Azoulay et al, 2007; Mealer et al, 2009; Poncet et al, 2007).…”

Section: Discussionmentioning

confidence: 99%

Oncology nurses' perceptions of advance directives for patients with cancer

Hobden

Bryant

Waller

et al. 2021

Nursing & Health Sciences

View full text Add to dashboard Cite

This study examined oncology nurses' perceptions of the impact of advance directives on oncology patients' end‐of‐life care. Nurses (n = 104), who were members of an oncology nursing society or worked in a large metropolitan cancer center, completed a cross‐sectional survey assessing perceptions of advance directives. There was high agreement that advance directives (i) make decisions easier for family (87%) and providers (82%); (ii) are doctors' responsibility to implement (80%); (iii) reduce unwanted aggressive treatment in the last weeks of life (80%); (iv) protect patient autonomy (77%); and (v) increase the likelihood of dying in a preferred location (76%). There was moderate or low agreement that advance directives (i) are accessible when needed (60%); (ii) are oncology nurses' responsibility to implement (46%); (iii) are always followed (41%); (iv) reduce the likelihood of pain in the last weeks of life (31%); (v) contain difficult to follow statements (30%); and (vi) have no impact on comfort in the last weeks of life (15%). Most nurses perceive benefits for advance directives, however, there remains uncertainty around accessibility and implementation. Guidelines and education about advance directive processes in oncology could improve person‐centered end‐of‐life care.

show abstract

“…Data on the topic are conflicting and suggest that families can be valuable health care surrogates or make choices not necessarily concordant with the patient's values and preferences [1,31]. Interventions aimed at improving communication between patients and their families have the potential to support surrogate decision making [32][33][34].…”

Section: Discussionmentioning

confidence: 99%

Physicians’ Views and Agreement about Patient- and Context-Related Factors Influencing ICU Admission Decisions: A Prospective Study

Cullati

Perneger

Scherer

et al. 2021

JCM

View full text Add to dashboard Cite

Background: Single patient- and context-related factors have been associated with admission decisions to intensive care. How physicians weigh various factors and integrate them into the decision-making process is not well known. Objectives: First, to determine which patient- and context-related factors influence admission decisions according to physicians, and their agreement about these determinants; and second, to examine whether there are differences for patients with and without advanced disease. Method: This study was conducted in one tertiary hospital. Consecutive ICU consultations for medical inpatients were prospectively included. Involved physicians, i.e., internists and intensivists, rated the importance of 13 factors for each decision on a Likert scale (1 = negligible to 5 = predominant). We cross-tabulated these factors by presence or absence of advanced disease and examined the degree of agreement between internists and intensivists using the kappa statistic. Results: Of 201 evaluated patients, 105 (52.2%) had an advanced disease, and 140 (69.7%) were admitted to intensive care. The mean number of important factors per decision was 3.5 (SD 2.4) for intensivists and 4.4 (SD 2.1) for internists. Patient’s comorbidities, quality of life, preferences, and code status were most often mentioned. Inter-rater agreement was low for the whole population and after stratifying for patients with and without advanced disease. Kappa values ranged from 0.02 to 0.34 for all the patients, from −0.05 to 0.42 for patients with advanced disease, and from −0.08 to 0.32 for patients without advanced disease. The best agreement was found for family preferences. Conclusion: Poor agreement between physicians about patient- and context-related determinants of ICU admission suggests a lack of explicitness during the decision-making process. The potential consequences are increased variability and inequity regarding which patients are admitted. Timely advance care planning involving families could help physicians make the decision most concordant with patient preferences.

show abstract

The experiences and perspectives of family surrogate decision-makers: A systematic review of qualitative studies

Cited by 53 publications

References 49 publications

Patient and Provider Decision-Making Experiences: A Qualitative Study

Patient and Provider Decision-Making Experiences: A Qualitative Study

Oncology nurses' perceptions of advance directives for patients with cancer

Physicians’ Views and Agreement about Patient- and Context-Related Factors Influencing ICU Admission Decisions: A Prospective Study

Contact Info

Product

Resources

About