Factors impacting the demonstration of relational autonomy in medical decision-making: A meta-synthesis

Abstract

Background

Relational autonomy is an alternative concept of autonomy in which an individual is recognized as embedded into society and influenced by relational factors. Social context, including social location, political structure, and social forces, significantly influence an agent to develop and exercise autonomy skills. The relational approach has been applied in clinical practice to identify relational factors impacting patient autonomy and decision-making, yet there is a knowledge gap in how these factors influence the demonstration of relational autonomy in the context of medical decisions of adults.

Objective

The present study targeted the existing knowledge of what and how relational factors impact individuals making medical decisions using the theoretical framework of relational autonomy.

Methods

A meta-synthesis study was utilized. Four electronic databases, including Embase, OVID Medline, CINAHL, and PubMed, were searched, along with gray literature and reference lists, to identify relevant studies.

Results

23 studies reporting 21 qualitative and two mixed-method studies were reviewed. Four themes emerged from the qualitative findings: (1) supportive relationships facilitate an individual’s relational autonomy; (2) obtaining comprehensive information from broader sources helps individuals exercise relational autonomy; (3) undue family pressure impedes the exercising of patient relational autonomy; and (4) healthcare providers’ dominant voice hampers the demonstration of relational autonomy.

Conclusions

Applying relational autonomy to assist adults in making well-considered decisions is essential. The meta-synthesis suggests establishing a supportive relationship between individuals, healthcare providers, and family. A supportive relationship will allow healthcare providers to make judgments in line with an individual’s values and wishes with the aim of promoting relational autonomy. Advance care planning was proposed as the effective solution to obtain a consensus between individuals and their families while respecting an individual’s values and preferences. Furthermore, it is considered crucial for healthcare providers to appreciate an individual's values and incorporate their preferences into recommendations.

Keywords

Adult medical decision meta-synthesis relational autonomy

Introduction

Respect for patient autonomy means allowing patients to decide based on their best interest because they are the best judges of what they truly want.¹ Feminist scholars have introduced the concept of relational autonomy to address the important role of enabling individuals to exercise their own decision-making while recognizing their position within a social network and appreciating the integral role of close relationships in their lives.^2,3 Medical decision-making encompasses choices made within and beyond the boundaries of the patient-healthcare provider relationship, occurring in clinical contexts and other settings.⁴ This process underscores the impact of external parties, such as the patient’s family on the decision-making journey. It is well-established that family members (FMs) and healthcare providers (HCPs) significantly contribute to a patient’s decision-making across different medical contexts.⁵ As a result, gaining insight into how relational factors contribute to the manifestation of relational autonomy is crucial. The current meta-synthesis examined the existing evidence of what and how relational aspects influence an individual’s decision-making, bringing the unique idea of how relational autonomy is demonstrated in the context of medical decision-making.

Background

Relational autonomy is an alternative concept of autonomy rooted in feminist ethics that emphasizes the socially embedded aspects of an individual.^6,7 Researchers have argued that historical, socio-political, and economic conditions affect one’s identity (i.e., gender, race, and ethnicity) and decision-making.^6–8 The individual’s relationships (with family, community, and society), responsibility, care, and interdependence are the heart of relational autonomy.⁹ In decision-making situations, relational autonomy allows individuals to make decisions by themselves under a dynamic balance of reciprocal relationships.^10,11

When considering medical care, FMs, HCPs, and caretakers are the “important social others”¹² in treatment and care plans. Relational autonomy acknowledges that an individual’s relationships can be supportive or coercive.¹³ The coercive influence occurs when one family member is more dominant than the other(s), leading to an imbalance of power relationships.³ A lack of social power may degrade the patient’s self-trust and confidence in communication with HCPs.^7,14 It is necessary to acknowledge an individual's interpersonal relationships and social status as a part of decision-making considerations.^15,16 Relational autonomy recognizes the supportive role of FMs in the medical decision-making¹⁷ when patients want to acquire the assistance of those who know them well.¹¹ The relationships between patients and essential persons, such as FMs and HCPs, promote social interaction and initiate communication opportunities, creating the active involvement of patients in the decision-making process.¹⁸

Relational autonomy is the ideal of patient-centered care, in which HCPs ensure an ethical principle of respect for patient autonomy by facilitating, supporting, and being responsive to autonomous, patient-driven decisions.⁵ Adopting relational autonomy assists in understanding patient choices without minimizing the complex nature of individuals and social circumstances. Thus, the value of cooperation in care and treatment decision-making is strengthened.¹⁹ Relational autonomy prevents paternalistic behaviors when HCPs make decisions based on their perspectives of the patient’s best interest but ignore a patient’s control over medical care decisions.²⁰

An integrative review was conducted to explore factors influencing cancer patients' decision-making in participating in clinical trials.²¹ The results indicated that the patient’s demographics, values and beliefs about clinical trials, social relationships with family, HCPs and friends, sociodemographic characteristics, institution and government policies, and medical procedures all affect patient choices; however, the study only targeted the decisions of cancer patients involved in clinical trials. A second integrative review identified factors associated with adherence to cancer treatment among cancer survivors.²² The treatment side effects, patient’s beliefs, self-efficacy, the patient-HCPs relationship, social support, and continuity of follow-up care impacted the patient’s adherence to the treatment.²² It’s not known how these factors impacted patient choices through relational autonomy. Studies on the perspectives of FMs and HCPs on patients' decision-making under the relational autonomy approach are lacking.

Apart from cancer patients, the literature has indicated that relational autonomy improves an individual's decisions in palliative care,²³ end-of-life care,²⁴ clinical trials,²¹ and genetic medicine.⁹ Patients desire FMs’ involvement while highly valuing HCPs’ participation in the decision-making process. In some situations, patients with dementia or end-of-life cannot speak for themselves; FMs and HCPs provide great support to improve patient autonomy.²⁵ Therefore, it is essential to understand how relational factors facilitate the demonstration of relational autonomy while being cautious about them as they hold the potential to constrain an individual in making autonomous choices.

In an effort to fill this gap, a meta-synthesis approach was used to understand the complicated and multifaceted aspects of relational autonomy, as well as discover how relational autonomy has been demonstrated within the healthcare delivery system.

Objective

This study aims to contribute to the understanding of what and how relational factors impact individuals making medical care decisions using the theoretical framework of relational autonomy.

Methods

A meta-synthesis was conducted using relational autonomy as a theoretical framework for the interpretative process.^10,26 Evidence derived from meta-synthesis can provide insight into the relational understanding of autonomy while complementing results obtained from previous reviews.

Search strategy

The population, phenomena of interest, and contexts (PICo) framework focused the search strategy for relevant studies (Table 1). Eligible studies included peer-reviewed articles written in English with participants being adults. A study was included if it used relational autonomy as the orienting framework or if relational autonomy was noted in the study results. A medical care decision in this synthesis was defined as an action to determine a healthcare professional’s recommendation related to medical assessment, symptoms management, and treatment plan. Studies focusing on decisions required for daily activities (i.e., living arrangements, what to wear, where to live) or social-related issues (i.e., social equality or human rights) were excluded.

Table 1.

Population, phenomena of interest, context, and types of study.

Population	Phenomena of interest	Context	Types of study
• Adults who use health care services	• Decision-making–related experiences through the approach of relational autonomy or relational autonomy were utilized to guide the findings	Medical care decisions	Primary studies
• Family members, caregivers who take care of adults and/or involve in the decision-making process	• Family members and healthcare professional’s perspectives on the adults’ decision-making process and how they support adults in exercising their relational autonomy
• Healthcare professionals who have experiences in involving in adults’ decision-making process

An expert librarian was consulted to assist with the identification of keywords and databases for the search process. Four electronic databases including Embase, OVID Medline, CINAHL, and PubMed were searched in March 2022, with no limitation on publication year. Key terms were utilized to narrow potential studies, such as relational autonomy, relational conception of autonomy, relational approach, relational account, relational turn, beyond autonomy, beyond individualism, interdependency, and interpersonal relations. Controlled vocabulary, synonyms, and different syntax with strings corresponding to various databases were employed (Supplementary materials). Additional articles were identified through a gray literature search and a manual search of reference lists. After removing duplicates, two reviewers screened the remaining articles independently in two stages: abstract and title and full-text screening.

Quality appraisal of included studies

Twenty-three articles remained after abstract and full-text screening (Figure 1). Two researchers (T. D. L. and S.-C. L.) independently assessed the level of evidence using the New Joanna Briggs Institute Levels of Evidence and Grades of Recommendation²⁷ with this institute’s Critical Appraisal Tool for qualitative research to appraise papers critically. The Tool contains 10 questions (2 points for yes, 1 point for unclear, and 0 points for not applicable) to evaluate the methodological quality of a study and determine bias in its design, data collection, analysis, and interpretation. The summary score for each study is derived by calculating the scores of relevant items, with total scores interpreted as percentages. A total score of >80% is considered strong quality, >70% is considered good quality, >50% is considered adequate quality, and ≤50% was considered limited quality.²⁸

Figure 1.

Flowchart of the review screening process.

Data synthesis

A thematic technique with the three-step guideline provided by Thomas and Harden²⁹ was applied to analyze selected studies. The text in the results section of the articles was treated as primary data. Detailed reading obtained a deep and comprehensive understanding of each study, while the results or findings presented in the abstract section were not utilized because the abstract was the summary of the results session. The first step was line-by-line coding of the participant account and narrative description provided by the author. Inductive coding was used to identify the main themes related to the study’s aims across secondary data sources. The codes extended as more studies were read.²⁹ Secondly, researchers identified the similarities and differences among codes and grouped relevant sets of codes into subthemes. Researchers needed to review the original paper where the code was retrieved to ensure coherence and avoid content overlap. Finally, subthemes were integrated into a set of synthesized findings and to created themes.²⁹ Three research team members (T. D. L., S.-C. L., and C.-Y. K.) engaged in the synthesizing process and resolved any disagreement through discussion.

Results

Characteristics of included studies

Among the 23 studies, 21 were qualitative reports and two were mixed-method studies. All included studies had good methodological quality with scores ranging from 80% to 95%. Table 2 summarizes the study characteristics, quality, and findings of the included studies. The articles included 357 adults (147 healthy and 210 patients), 146 family members (FMs), and 230 healthcare providers (HCPs). The decision-making contexts varied across the included studies, containing cancer treatment (n = 5), care planning for the elderly (n = 5), end-of-life care (n = 2), advance care planning (n = 2), childbirth (n = 2), prenatal screening (n = 2), genetic testing (n = 2), and one each in moral case deliberations, mental health services, and allogeneic stem cell transplantation.

Table 2.

Summary of included studies.

Author/country	Purposes	Participants	Methodology	Data collection	Data analysis	Findings	Level of evidence/Research quality
Asiedu, Ridgeway ³⁴/USA	• To understand how relational encounters with FMs and HCPs may impact ovarian cancer patients’ decision to join clinical trial• To explore the FMs’ perception on patients' decision-making	33 ovarian cancer patients, 39 FMs	Qualitative	In-depth interviews	Inductive thematic analysis	• Patients’ relationships, experiences, and social status significantly shaped their decisions• Patients decided to choose who should be included in decision-making• Doctors’ advice and their enthusiasm influence patients’ choices• FMs keep maintaining patients’ “final say” in the decision-making process• FMs support patients’ autonomy especially when FMs believe that patients can give right choices	Level 3/18/20 (90%)
Bekkema, de Veer ³³/Netherlands	• To describe how caregivers and relatives respect for autonomy of intellectual disabilities (ID) people in end-of-life care• To discuss to what extent this corresponds with a relational concept of autonomy	47 caregivers or relatives of 12 deceased people with ID	Qualitative	Individual in-depth semi-structured interviews	Inductive thematic analysis	• Respect for the autonomy of ID patients was mainly reflected in helping them familiarize themselves with their health condition and important decisions• Qualities were crucial for respecting autonomy: attention to information needs, connecting, recognizing end-of-life care needs, spending room to show preferences, and discussing dilemmas	Level 3/17/20 (85%)
Brown, Baken ⁴²/New Zealand	• To understand the motivators and barriers to advance care planning uptake	9 older adults	Qualitative	Semi-structured interviews	Inductive thematic analysis	• The five themes were: (1) knowledge of advance care planning; (2) incomplete planning; (3) relational autonomy (personal needs for comfort and support, wish to minimize family conflict, desire not to be a burden to others); (4) focus on family; and (5) still time to plan	Level 3/16/20 (80%)
Cook and McCarthy ³⁰/Australia	• To examine how treatment recommendations and decisions are identified when older adults with cancer also have dementia	9 HCPs (qualitative part)	Mixed method	Semi-structured interview	Inductive thematic analysis	• Treatment decisions were impacted by: (1) whether older adults with cancer and dementia are assessed individually or in relational autonomy context; (2) HCPs discuss treatment decision-making and health risk assessments are based on the roles and relationships with the different people involved	Level 3/17/20 (85%)
Craig, Ray ³¹/Australia	• To explain the recommendations of multidisciplinary hospital-based clinicians about the benefits of advance care plannings (ACPs) for people diagnosed with neurodegenerative disorders, and the elements that influence how doctors apply such plans	32 HCPs (16 doctors, 6 registered nurses, and 10 allied health clinicians)	Qualitative	Semi-structured interviews	Inductive thematic analysis	• Two main themes were formed based on patients’ agency: recommending agency through ACPs and limiting agency through ACPs• Doctors prioritize engagement with family for consent to treatment, usually without reviewing the ACPs• Doctors practice relational autonomy when they envisage that families understand the person's likely wishes• Physicians and FMs partner in healthcare decisions on patients' behalf• Physicians' protective concern for family, and their tendency to prioritize active treatment are the barriers to ACPs• Doctors extended considerable empathy toward families• Acknowledge the vital role of important relationships surrounding a dying person, so involving these relationships in the decision-making process	Level 3/19/20 (95%)
Dutta, Lall ³⁹/Singapore	• To examine the attitudes of HCPs on patients’ autonomy in decision-making at the end-of-life	63 HCPs	Qualitative	Focus group discussion	Inductive thematic analysis	• Relational autonomy is the gold standard of decision-making at the end-of-life in Singapore, which includes: (1) the preservation of harmony in the family; (2) the Confucian virtue of filial piety; specifically, children’s ability and resourcefulness to care for their elderly parents	Level 3/18/20 (90%)
Forsyth, Scanlan ³⁵/Australia	To investigate the process of decision-making in high-risk medical procedures (allogeneic stem cell transplantation)	Transplant hematologist (n = 7), allied health (n = 9), patients (n = 16), significant others (n = 10)	Qualitative	In-depth interviews	Constant comparative analysis	• Medical factors: disease characteristics (type, stage, progress of their disease, and particularly the experience or possibility of relapse); the need for transplantation; expert opinion; procedural aspects• Social factors: the will to survive, family relationships, and support network	Level 3/17/20 (85%)
Garcia, Timmermans ⁴⁰/Netherlands	• To explore whether offering prenatal screening undermines autonomous decisions among women	59 women	Qualitative	Semi-structured interviews	Inductive thematic analysis	• Women consider this is a chance for making up their minds about testing• Women make decisions freely to follow their individual perspectives• Women preferred to share the decision’s responsibility and its consequences for other close persons• Women were influenced by: (1) external constraints: the influence from their partner, other close persons, midwife and obstetrician, society reactions; (2) internal constraints: emotional reactions to the test offer, worries about the fetus’ health, feelings regarding a disabled child
Gilbar and Barnoy ³/Israel	• To explore whether the presence of relatives in genetic consultation affects the decision making process and the patient’s perception of autonomy, and how it is practiced in genetics	28 HCPs (12 genetic counselors and 3 geneticists, 6 nurses and 1 social worker, 6 doctors)	Qualitative	Semi structured, face to face interviews	Framework analysis	• Patients brought relatives to get informational and emotional support• The counselors recognized the pros and cons of the relatives’ presence and tried to protect the patient’s voice• The family presence affected patient’s decisions to undergo genetic testing and preventative operations when she is diagnosed as a carrier• In genetics, blood relatives who are present in consultations are perceived as patients or potential patients	Level 3/18/20 (90%)
Heidenreich, Bremer ³²/Sweden	• To describe the content of healthcare professionals’ moral reasoning during moral case deliberations regarding ethically difficult patient situations	22 moral case deliberations facilitator (philosopher, chaplain and deacon, HCPs)	Qualitative	Focus group discussions	Content analysis	• How to achieve a balance between professionals’ convictions about good care and the patients’ dissonant preferences for care• How to build up a responsible relationship with the vulnerable person: treat patients as susceptible human beings, protecting dignity and integrity, defining their own moral responsibility, having patience in giving the patient and family time to adapt to the situation
Lago, Bógus ⁵¹/Brazil	• To understand how the social circumstances and relationships of patients with substance use disorders affect their exercise of autonomy	15 participants (3 patients, 3 relatives, 9 HCPs)	Qualitative	In-depth individual and group interviews	Inductive thematic analysis	• Three relational dimensions constrained substance use disorders’ autonomy: (1) factors impact the values and attitudes of stakeholders: a social, political, and cultural context of coercion, along with an environment of powerlessness, drug dependency; (2) the oppressive systems and structures within the treatment setting: facility’s regulations, challenges in sharing care responsibilities with other health service institutes (substance use disorder cases cannot access mental health services in the community); (3) the limited capacity to exercise autonomy of drug users: self-trust and personal skills autonomous self-care action	Level 3/18/20 (90%)
Lambert, Balneaves ⁴¹/Canada	• To explore breast cancer survivors’ experiences and perspectives of persisting with adjuvant endocrine therapy (AET) and to identify the psychosocial and healthcare system factors affecting AET persistence	22 breast cancer women	Qualitative	Semi-structured interviews	Inductive thematic and constant comparative analysis	• Factors impacting AET persistence included: (1) side effects, (2) women's perception of recurrence risk, (3) medication and necessity beliefs, (4) social support, (5) the relationship with HCPs, and (6) the quality of follow-up care	Level 3/18/20 (90%)
Lambert, Balneaves ⁵³/Canada	• To explore the experiences and perspectives of HCPs in providing care to breast cancer survivors prescribed AET• To identify how social and structural factors influence the provision of AET-related care, and• To ascertain HCPs’ recommendations for optimizing AET adherence and related care	14 HCPs	Qualitative	In-depth interviews	Thematic and constant comparative techniques	• HCPs focused on four main components of care: (1) having careful conversations about AET; (2) navigating transitions in follow-up care; (3) managing symptoms is crucial; (4) dealing with AET discontinuation• HCPs’ role includes providing recommendations, educating women about AET, and supporting their adherence to therapy	Level 3/18/20 (90%)
Lau, Yi ³⁸/China	• To explore Hong Kong Chinese pregnant women’s preferences for individual and relational autonomy for non-invasive prenatal testing for Down syndrome	36 women received non-invasive prenatal testing	Qualitative	Semi-structured interviews	Inductive thematic analysis	• Most Hong Kong Chinese women valued both relational and individual autonomy in the decision-making process• Women wanted to get support from physicians and desired to involve their partners in decision-making while retaining control over the outcome• Women did not want to engage FMs in their decisions• Some women referred to other women’s experiences as supportive sources	Level 3/18/20 (90%)
Noseworthy, Phibbs ⁴⁵/New Zealand	• To explore problems around the decision-making process and suggest a relational decision-making model for midwifery care	8 midwife–woman pairs	Qualitative	Focus group discussion	Inductive thematic analysis	• A range of relational, social and political factors that are not present within existing decision-making models were highlighted• The themes contain: (1) ontological and philosophical influences on decision-making; (2) uncertainty, vulnerability and relational trust; and (3) socio-political and cultural influences• The considerations of social, cultural and familial aspects as well as identities, beliefs, values, conversations, and practices produced uncertainties in terms of potential actions and expected outcomes• “Unplanned” birth situations decreased women's autonomy and increased vulnerability to make decisions• The political context may influence possibilities for decision-making	Level 3/17/20 (85%)
Schenell, Ozanne ⁴³/Sweden	• To develop a model facilitating self -determination in residential care	7 focus group interviews (5 with staff, 1 with residents, and 1 with managers)	Qualitative	Focus group discussions	Constant comparative analysis	• The model “To make and execute decisions throughout life” shows that residents in residential facilities have the desire to plan their end-of-life care with the help of staff: (1) want to decide over their health state, their wishes need to be given priority; (2) inquiries about health-related information need to be delivered in time	Level 3/18/20 (90%)
Shih, Rapport ¹⁸/Australia	• To explore how treatment-related choices for women with breast cancer are fostered by the relationships with physicians, FMs, and other aspects	10 breast cancer women, 8 physicians	Qualitative	Observation and semi-structure interview	Schema analysis	• Supportive resources: family and clinicians.• Information exchange: communicative space for building trust, negotiating values, promoting greater patient choices• Patient’s experience built their self-confidence and assertiveness• Four spectra of relational autonomy: (1) familial and other personal relationships and associated identifiers; (2) professional caregiving relationship; (3) social and situational context of illness and treatment; (4) patients’ self-reflection and personal growth during treatment	Level 3/17/20 (85%)
Sinclair, Gersbach ³⁷/Australia	• To understand the experiences of dementia people and their FMs in relation to decision-making and their views on supported decision-making	25 dementia patients, 32 FMs	Qualitative	Semi-structured interviews	Interpretative Phenomenological Analysis (IPA)	• Patients with dementia expected to involve their long-term close relationships and maintain their involvement in medical decision-making• Social and contextual factors also impacted the ability of people with dementia in maintaining their involvement in the decision-making process	Level 3/19/20 (95%)
Sinclair, Gersbach ³⁶/Australia	• To understand the lived experiences of couples living with dementia regarding healthcare, lifestyle, and “everyday” decisions	28 participants (13 dementia people, 15 spouse partners)	Qualitative	Semi-structured interviews	IPA	• A spectrum of decision-making styles includes independent, joint, supported, and substituted• Factors impacting the decisions: (1) individual factors: from dementia patient’s side: dementia stage, daily fluctuations, self-efficacy, acceptance of condition, accepting help, desire to have control or delegate to others; from partner’s side: skills and experiences in caring for patients, stressful demands and emotional burden, belief and attitude about dementia; (2) relational factors: arise from the relationship between dementia patients and their partners, a relationship quality: open communication, mutual contributions, and commitment to the relationship, trust relationships; relational history of decision-making; relational values system; (3) decisional factors: included the characteristics of a decision that influenced the decision-making approach; (4) external factors: FMs, HCPs, institutional process, access to services, access to the social network, access to information	Level 3/19/20 (95%)
Weber, Solomon ⁴⁶/USA	• To explore the groupings of factors influencing women’s decisions about the cancer treatment	44 breast cancer survivors	Qualitative	Semi-structured interviews	Interpretive approach	• Five treatment decision-making styles: (1) medical expert; (2) self-efficacy; (3) relationship embedded (other-focused, low information needs); (4) inhibition; (5) constellation of information• Social and medical factors affect patients with breast cancer as they make treatment choices at the same time	Level 3/16/20 (80%)
Wood, Mignone ⁴⁴/Canada	• To explore women’s experiences of selecting a birth plan at a birth center• To understand how women decide to plan for out-of-hospital birth and the meaning that women ascribe to this selection progress	17 post-partum women	Qualitative	Semi-structured interviews	IPA	• Factors related to women’s sense of safety impact women’s choices: (1) deciding in the circumstances of relationships; (2) exercising personal autonomy; (3) expressing personal ideology; (4) thinking of it carefully; (5) being eligible; and (6) the psychology of the space• The concept of relational autonomy was emphasized in this study, in that women make decisions in the context of their relationships with their midwives and husbands	Level 3/17/20 (85%)
Zimmermann, Kone ⁵⁰/Switzerland	• To assess the aspects of social impact in genetic testing-related choices and to connect these with principled and relational theories of autonomy	18 adults genetic counsellees and 2 counseling physicians	Qualitative	Semi-structured face-to-face interviews	Grounded theory analysis	• In social relationships: coercion and social pressure affect patients' decision• In family relationships: relatives’ influence• Patients-HCPs relationships: HCPs’ professional opinion affect decision-making process• The study indicates both individual and relational autonomy guide the decision-making process	Level 3/18/20 (90%)
Zizzo, Bell ⁴⁷/Canada	• To understand the participation wishes of Parkinson's patients in healthcare decision-making processes	80 patients	Quantitative and Qualitative	Survey (N = 60) and semi-structured in-depth interviews (N = 20)	Thematic qualitative content analysis	• Participation’s preferences in decision-making depend on decision type (e.g., medication versus lifestyle), relational and contextual factors (e.g., age, income, need for trust in the patient-physician relationship)• Relational autonomy corresponds to how patients participate in decision-making: patient chooses, shared choice, patient delegates (physicians)• Patients emphasized the patient-physician relationship and information needs	Level 3/17/20 (85%)

Four themes emerged from the analysis of the 23 studies using relational autonomy as the theoretical framework, including (1) supportive relationships facilitate an individual's relational autonomy; (2) obtaining comprehensive information from broader sources helps individuals exercise relational autonomy; (3) undue family pressures impede the exercising of patient relational autonomy; and (4) healthcare providers’ dominant voice hampers the demonstration of relational autonomy.

Supportive relationships facilitate an individual’s relational autonomy

Individuals described the support of essential individual-family and individual-physician relationships. The relationships were built on trust, mutual respect, openness, and sharing, which facilitate an individual’s ability to exercise relational autonomy.

Family support helped individuals maintain a sense of self and identity in the context of medical care.^30,31 Family support assisted in framing care plans according to the patient’s preferences.³² In order to respect the autonomy of people with intellectual disabilities, FMs strived to communicate to comprehend patients’ care needs and wishes in order to provide good care and fulfill patients’ expectations in the last phase of life.³³ Families made efforts to maintain patients’ involvement in decision-making by reminding, simplifying and interpreting information,^18,34 discussing treatment options together,^34,35 and prolonging decision time.³⁶ Engaging individuals in the decision-making process is a good way to respect and improve their well-being and quality of life:
They deserve to be respected the same way, they have rights.³⁷

From a relational viewpoint, FMs participated in medical discussions, raised their considerations, and supported individuals physically and emotionally,^3,34,35,38 assisting individuals’ autonomy in making medical care decisions. The essential role of family was expressed by respecting an individual's decisions.^3,34,35 Physicians stressed how a trusting relationship with family brings confidence to the individual when decisions are required:³
When an individual has to make a decision to undergo testing, when she receives support from a relative she trusts, I think that it is easier for the individual.³

Even though individuals can make their own decisions, they still want to hear their families' advice before deciding,^3,39,40 which demonstrates the relational aspect of autonomous decision-making. As facilitators, physicians enabled open discussions between individuals and families to improve the decision-making process.^31,32,37,39 When the patient’s family requested to withhold illness-related information from the patient to avoid negative emotion, HCPs advocated for patients' relational autonomy by negotiating a patients’ rights to the information.³⁹ Physicians provided patients opportunities to communicate their preferences and internal values with FMs, involving them in decision-making.
I try my best to convince them that the patient needs to know about the diagnosis.³⁹

Some HCPs advocated for patients’ wishes in care plan discussions, ensuring that patients’ preferences would be preserved for future care.³⁹ HCPs put themselves in the patient’s shoes to “read the patient’s state of mind”³² and identify those needing support and staff’s presence. Treating patients as vulnerable and attempting to understand patients’ health problems and psychological status is essential for HCPs in providing good care and respecting patients’ autonomy.³² Individuals pointed out that a positive patient-physician relationship increases trust and confidence in the HCPs' suggestions. As a result, patients were inclined to persist with treatment,⁴¹ discuss future care with their physician,^42,43 and follow physician’s recommendations.^35,40

The trusting relationship with HCPs was found when an individual wished to be advised by their doctor regarding treatment options or when being “told what to do.”^34,40 When individuals are treated as the center of decision-making, a trusting relationship with HCPs is created. When individual perceived a “sense of safety,”⁴⁴ no pressure is placed on their shoulders,⁴⁴ thus, they felt confident to decide in the context of medical care. A midwife reported:⁴⁴
Women and midwives became familiar with each other; women's beliefs, values, and life experiences were shared. This depth of understanding made women feel safe, “part of that sense of safety was being known by your care providers”.⁴⁴

A broken relationship between individuals and HCPs ruins trust, resulting in insufficient support and poor symptom management, adversely influencing the patient's adherence to treatment.⁴¹ The pivotal role of a trusting relationship with the physician was also expressed in emergencies. Urgent events increase vulnerability due to restricting individuals’ autonomy and choices as time limitations,⁴⁵ so it is difficult for patients to make a well-considered decision. The trust that HCPs would help them make a right decision was reported by women:^45,46
I trusted he was doing what he needed to do.⁴⁶

Overall, the significant relationship between individual-physician and individual-family plays a supportive role in the individual’s decision-making. FMs and HCPs maintain individuals’ identities, advocate their rights, and assist individuals in making autonomous decisions in line with their wishes and values. Supportive relationships facilitate the demonstration of relational autonomy.

Obtaining comprehensive information from broader sources helps individuals exercise relational autonomy

Individuals are involved in social relations, in which individuals’ relational autonomy is cultivated and nurtured by self-experience and social interactions with other people.¹³ Individuals acquire comprehensive information from a variety of resources, including past medical experiences, life experiences, suggestions from social interactions, assisting them in analyzing medical situations to make thoughtful decisions.

Individuals have a need to seek knowledge and information before making decisions.^38,46,47 In healthcare context, HCPs are gatekeepers of medical resources,^48,49 providing meaningful information relevant to patients’ diseases and medical options. Traditionally, bioethical discourse portrays patients as passively receiving medical suggestions and accepting their physicians as authoritative experts.⁴⁹ However, through a relational autonomy perspective, individuals not only receive information from HCPs;^{18,34,38,45–47} rather, they are active inquirers asking for advice from their relatives and friends,^33,34,45,46 and from those with experience in the similar decision circumstances.^34,38 These findings indicate that individuals are not independent of their interconnection with others, they engage their relatives, friends, and HCPs as integral parts of decision-making.

However, individuals do not give equal consideration to all information sources, indicating different levels of relational engagement in decision-making. Many considered the information obtained from the Internet and HCPs as reliable source.^{18,34,38,44–47} Advice from important others, along with self-information efforts, assisted people with cancer acquire confidence in their choices,⁴⁶ showing a relational aspect of autonomous decision:
I would say 75% was my own research. I spent a lot of time online ... it was mostly the journal articles ... the research articles ... And then I would say 15% doctor's advice. And then 10% my sister.⁴⁶

Previous personal experiences helped individuals form their values and preferences to make a reasonable decision.^18,44,45 A seventy-two-year-old woman with a previous negative chemotherapy experience decided to select a mastectomy rather than chemotherapy during a second round of treatment.¹⁸ For individuals without a medical background or medical-related experiences, their analytical and decision-making skills were built from “life experiences” and “personal characteristics and social positions.”³⁴ These skills assist them when considering treatment options, asserting the individual’s autonomy skills re-development in the social context.
Everybody knows I make sound decisions at work, at home, family… I'm very analytical thinking and I just put things in perspective.³⁴

Information is viewed as a power sharpening and strengthening individuals’ medical care decisions. The collected medical information allows an individual to understand and evaluate the benefits and potential risks of decisions.^18,34,38 As Mackenzie and Stoljar ¹⁰ noted, individuals’ autonomy is originated from the relations with social context, surrounding others, and social institutions. When making a medical care decision, individuals need to obtain essential medical information to make decisions based on cultural beliefs,⁴⁵ individuals’ obligations due to family circumstances,³⁴ and work arrangement.¹⁸ Taking midwifery care as an example, placenta management is highly valued according to New Zealand aboriginal Māori culture because it is a symbol that connects the baby's life. Thus, in New Zealand, the decision of managing the placenta after birthing is raised for almost women regardless of ethnicity.⁴⁵

On the other hand, it is essential to pay attention to the connection between information attainment and time limitation. If patients are rushed into decisions, it will reduce their ability to become informed and patients’ concerns would be failed to be addressed.^38,41 The emergency is an example of this consideration. Falling into emergency situations deprives individuals of gaining essential information from broader sources to choose what they truly want. Some pregnant women recalled emergency situations occurred, such as “unplanned birth,” “exhaustion,” or “early deviation from the birth plan.”⁴⁵ These encounters made them become more powerless through lack of information, vulnerable health conditions, and not “thinking a whole lot.”⁴⁶

Overall, to make reasonable decisions, it is beneficial for individuals to gain comprehensive information from various sources. When making medical care decisions, individuals do not isolate themselves from their own experiences, personal characteristics, advice, and interactions with significant others. Instead, they actively draw upon these factors as crucial parts of their decision, supporting a relational autonomy perspective in decision-making.

Undue family pressure impedes the exercising of patient relational autonomy

Relational autonomy could be seen in a descriptive sense as acknowledging that relational aspects are parts of the decision-making process that can be supportive or oppressive. The findings from six qualitative studies indicate that FMs can dominate individuals and put pressure on individuals’ decisions in certain circumstances.^{3,37,38,40,50,51} Some FMs compel individuals to adopt their preferences and opinion, violating an individual’s autonomy.¹¹

Individuals can be affected by the undue interference of other people in terms of emotion, domineering voice, and social judgment.^3,37,40,50,⁵¹ Individuals and HCPs have realized the pressure created by family.^3,38,40 A pregnant woman who accepted a prenatal test reported:⁴⁰
I do feel some pressure. Suppose I get a high risk from the test, than my parents would undoubtedly press me. They would try to force me to terminate pregnancy.⁴⁰

In genetic medicine, individuals had difficulties disclosing a decision to obtain genetic testing to their family and friends.⁵⁰ They were afraid of being judged and did not want to be influenced by persuasion.⁵⁰ The relationship between individuals and relatives becomes a disadvantage when an “imbalance of power”³ occurs where the relative is the dominant party. A physician, discussing an adult child, emphasized: “Sometimes the companion takes over the conversation” and “the mother is pressuring her daughter.”³ Relatives, especially parents, tended to dominate their children's voices during genetic testing consultation.^3,50 A genetic counselor shared:³
I had a female [patient] and the mother simply yelled at her daughter during the consultation “why do you want to do the test? I don't want you to do the test”. Look, there are families that create substantial pressure.³

Some FMs admitted that their persuasion was the main force leading their children to undergo genetic testing.⁵⁰ Persuasion was illustrated by a mother, revealing the relational aspect of the decision-making:
I think my daughters just got tested because I said so (laughs)… I think I overruled them a little bit, to be honest.⁵⁰

Notably, familial oppression occurred between married couples during treatment for women with breast cancer.³ An example reinforced the roots of relational autonomy from feminist perspectives:
I had cases where…the male partner put pressure on the patient to undergo a mastectomy.³

In some situations, individuals created their own pressure after interacting with their FMs.³ A client came to a pre-testing consultation with her sister. Their mother was a patient with breast cancer, and the sister agreed to undergo genetic testing that makes the client felt guilty and perceived stress even though she did not want to take the testing:³
Am I the stupid one who won't do the test? My sister is doing it.³

Even one of the FMs also recognized that the close relatives of patients could be a source of abuse.³⁷ The autonomous choice of one elderly suffering from dementia was at risk of being taken away by a carer for mercenary purposes, as per the confession of one FM:³⁷
David described how his sister, who was also diagnosed with dementia, had experienced her children “taking over,” making decisions that he felt were driven by their own self-interest.³⁷

Overall, familial influence can be oppressive in some contexts of medical decisions. Undue family pressure on the individual’s relational autonomy was found in genetic medicine, prenatal testing decisions, and decision-making among people with dementia. Undue interference resulting from FMs’ dominant voice in an unbalanced power relationship, judgment, persuasion, and self-created stress of individuals, inhibit an individual’s relational autonomy.

Healthcare providers’ dominant voice hampers the demonstration of relational autonomy

The relationship between the individual and HCPs plays a crucial role in the decision-making process. HCPs are advocates who protect individuals’ rights and serve their best interests. As professionals in the healthcare field, the HCPs' opinion is highly valued and serves as powerful advice to lead medical care decisions. However, a physician's opinion may prompt an individual to make decisions that might conflict with their preference.⁵²

A physician's opinion is “seldom questioned by patients”^34,39 in treatment promotion and symptom management. Physician's suggestions, such as “You would be a good candidate for it”³⁴ or “You know there's no option. You'll be having a bone marrow transplant,”³⁵ were decisive in forming the patient's medical treatment decisions.^34,35,45,50 HCPs were dominant to provide treatment legitimately³⁵ with language shaped for the treatment’s benefits.³⁴ As a result, HCPs were the leading force in making final decisions for individuals.⁴⁶ Some patients were obedient in following HCPs’ instructions.^18,34,39
As long as they [physicians] tell me what to do - what lotions to put on it, drink water. As long as they tell me what to do, I will do it.¹⁸

Because patients are very obedient, they listen to doctors. “Doctor asked me to do this, I must do [it]”.³⁹

Some individuals believe they lack knowledge and expertise in making a medical care decision:
He has expertise I will never have … I don't have the tools to go beyond the information that I have.⁴⁷

When individuals were diagnosed with severe disease, both the patient and the FMs felt that they were “hit with a huge bullet” and “life isn't in your hands anymore,”³⁴ placing them in a vulnerable situation. Physicians were trained with specialist backgrounds and may occupy a socially privileged position compared to their patients, creating a power imbalance relationship between patients and physicians, especially when patients were new to understanding their disease and treatment.^18,30 Patients did not want to upset their physician⁵³ and tried to preserve the patient-physician relationship⁴¹ by following the physician’s suggestions. Thus, patients placed themselves acquiescently and were positioned as passive in decision-making. From a relational autonomy perspective, the patient-physician relationship is characterized by an imbalance of power and knowledge which demonstrates the impact of social location in medical care decision-making.¹⁷

Cancer patients undergoing treatment reported that they only discontinued treatment if they obtained the physician's permission,^41,53 reflecting the vocal authoritative power of physicians in shaping patients’ decisions, particularly when they have a progressive illness. If physicians gave a determined suggestion, especially when encouraging patients to start a promising treatment, they would tend to comply.⁴¹ Some patients accepted physician’s decisions without proposing any concerns about the potential side effects of treatment; they were afraid of being judged as resistant or dismissed.⁴¹

Along with a supportive role of individual-physician relationship, the HCP’s voice as well as social location, can overwhelm relational autonomy, resulting in the individuals' voice becoming underrepresented. Individuals withhold their preferences and values while tending to follow the HCPs’ recommendations regarding treatment decisions that can interfere with their relational autonomy.

Discussion

As noted by Bell,⁴⁸ relational autonomy in bioethics brings a unique perspective of feminists to the issues regarding personhood and autonomy, with implications in healthcare contexts. The findings from the present meta-synthesis reinforce the important notion of relational autonomy that individuals are socially situated, and the medical care decisions are constituted via their interactions with their social environment and web of social networks.¹⁴

When applying relational autonomy to healthcare, it’s acknowledged that the socio-political and relational circumstances impact individuals’ medical decision-making.⁴⁸ An individual’s autonomy is developed and constantly affected by interaction with others; the impact can be positive or negative.¹³ In line with the previous studies, the synthesis findings pointed out that FMs provide informational support and enhance the quality of communication between physicians and patients by explaining medical information to individuals.⁵⁴ A family presence supports patients emotionally, notably when they receive bad news.⁵⁴ Previous literature revealed that FMs' roles were limited in supporting the patient to overcome illness,⁵⁵ reporting the patient's situation to physicians,⁵⁶ or providing long-term care.⁵⁷ Meanwhile, the current findings extend the familial role in maintaining patients' sense of self and identity during decision-making.^30,31 This is supportive to the Ho¹¹ conclusion that the family individual relationship is an integral part of an individual's identity, particularly when patients have critical health conditions, they are likely to consider their family's wishes as a priority. Therefore, HCPs, especially nurses, need to facilitate the discussion between family and patient and try to build a good relationship with the family to improve the quality of care for patients.⁵⁶

Regarding the individual-physician relationship, the finding of the present meta-synthesis is similar to the review of Bell and Balneaves,²¹ who concluded that a climate of trusting relationships between clinicians and patients brings comfort to patients during decision-making. It’s recommended that clinicians should encourage patients to actively find and utilize autonomy-supporting resources from the surrounding networks, such as support groups and relevant websites exist.⁴⁹ Involving patients in decision-making is essential, especially people at the end-of-life and those with cognitive impairment.^58–60 According to Agich,⁶¹ caretakers should be responsible for helping patients identify their autonomy and attempt to provide good care at the end-of-life, such as trying to understand their view of life, listening to their stories, and assisting them to stay close to themselves.⁶² Patients facing lethal progressive illnesses or those in emergencies tend to heavily rely on professionals, as a result of trusting the relationship with their physicians.^34,45 Evidence shows that patients have difficulty in making autonomous decisions under emergent situations due to time pressure and increased vulnerability.^19,63 Based on relational autonomy, it's suggested to establish a supportive relationship between patients, HCPs, and FMs so that HCPs can make judgments in line with the patient's values and preferences, aiming to promote patients’ relational autonomy.^13,64

The theme regarding obtaining information indicates that individuals perceived supportive information from the Internet, family, medical staff, and others. Individuals actively seek information through discussion with their close ones to gain a comprehensive understanding of medical options and create a realistic view of their situation in order to know what they should expect to happen.^65,66 The finding from this meta-synthesis again reassures the power of information in making medical care decisions. In the same line, a previous study revealed that pregnant women feel most autonomously when receiving the assistance of well-informed health professionals.⁶⁷ Face-to-face consultation with trained physicians thereby is necessary to facilitate individuals' decisions.³⁸ Healthcare professionals impact individuals' decision-making by framing information.⁶⁸ Framing can promote autonomous decisions when individuals perceive careful guidance for their decision-making processes and receive adequate information.⁶⁹ Individuals draw on other people's experiences to facilitate or strengthen their decisions as proposed by some researchers,^70,71 allowing individuals to shape their views without oppression to achieve autonomous choices³⁸ which reveal relational aspects of autonomy. Obtaining information on the Internet gives individuals an opportunity to seek information and others' opinions anonymously, without the fear of stigma or judgment.³⁸

The review findings indicate that an individual's relational autonomy could be improved by surrounding relationships or undermined by these networks as mentioned elsewhere.^11,13 For example, in some situations (i.e., genetic medicine), family dominance suppressed individuals from making decisions independently.^15,54 Relational autonomy has been recognized as an essential factor in genetic medicine, especially when genetic information or data could affect the individuals' families even more than themselves.⁹ A previous study showed that in some clinical contexts, families have the intention to withhold medical-related information from patients since they believe that providing information concerning bad news will induce a devastating impact on them, although most patients desire to know the truth, particularly when patients know they are in a severe condition.^54,72 As a result, patients might not access essential information in relation to their illness and medical treatment, hampering them from making decisions in line with their values and expectations.

In end-of-life care, HCPs acknowledged that patients could be burdensome in striving for life-sustaining treatment to fulfill their families' expectations, although that is not congruent with the patients’ wishes.⁶⁶ Undue influence from families is considered negative interference that directly pressures individuals and makes individuals create oppression themselves. This finding supports Sherwin’s¹⁴ perception that relational autonomy allows us to see the effect of internalized oppression on individuals’ autonomy. Breslin⁷³ revealed that patient autonomy could be overridden when the family plays an active role in consultations with doctors. This situation oftentimes happens among patients as children and relatives as their parents, which is justified by the parents’ perception of having the role of still acting for their adult children's affairs.¹⁹ However, familial impact leads to the patient, who is primarily influenced by medical care decisions, not having an opportunity to speak up and express their wishes. Ho¹¹ argued that family impact is unjust; this impact could be tolerated since they are the only family of the patient, formulating the patient's identities. Therefore, completely excluding family from decision-making can distress them. It is recommended that advance care planning be utilized as an effective solution to achieve consensus between patients and families in making medical decisions that align with an individual's preferred care and treatment.⁷⁴ There was a recognition that family potentially pressures individuals to change the individual’s decision, compromising their autonomy.¹¹ In order to preserve an individual’s relational autonomy, HCPs need to be sensitive and understand patients’ relational histories and relevant social aspects that formulate their identities. An attempt to facilitate a meeting with patients to understand whether they want to make a decision or delegate to others is needed.⁷⁵

The findings of the current meta-synthesis reveal the dominant voice of HCPs during the decision-making process. Individuals tended to follow physicians' suggestions and defer decisional authority to physicians in many contexts of medical care decisions, especially when they have severe diseases. Relational autonomy recognizes that when a person enters the “kingdom of the sick,” they hold a new kind of socio-political identity: the patients.⁷⁶ Individuals thereby become reliant upon HCPs who own medical knowledge, expertise, and medical judgment reinforced by legal entitlement³⁵ to bring them back to the “kingdom of the well.”⁷⁶ Some strictly obey physicians' advice aligning with the traditional view of a doctor-centered medical practice.⁷⁷ In line with this, Sekimoto and Asai⁷⁸ found that 60% of people with cancer would follow a physician's opinion even if their wishes conflicted with the physician’s suggestions. The patient identity can be more complexly layered with social location, race, gender, and sexual identity, shaping autonomy skills and the individual's experience as a patient in healthcare contexts.⁴⁸ Moreover, the finding of this meta-synthesis echoes the notion of articulating autonomy and vulnerability theory¹³ in which the vulnerable nature of human beings in the individual-physician relationship context can deprive individuals of making autonomous decisions. When individuals confront illness, they become more vulnerable and powerless than usual,⁷⁹ thereby placing themselves in a lower position to show their preferences and values. The finding strengthens Sherwin’s¹⁴ demonstration of how power differences between medical professionals and patients influence patients’ autonomy and medical care decision. Social power is considered the center of decision-making analysis raising the assumption that patients agree to take treatment because they trust clinicians as a person and as a medical professional, rather than genuinely understanding that treatment.^80,81 It’s suggested that physicians should accordingly make recommendations with much caution and respect patients’ wishes and personal values.⁵²

Different from other studies, the present meta-synthesis employs diverse perspectives from different populations, including individuals, FMs, and HCPs, to portray a picture of the comprehensive impact of social relationships in exercising relational autonomy. There is an urgent need to reduce the oppressive impact of social relationships to promote relational autonomy in medical circumstances. The broad inclusion of clinics and diagnosis in this synthesis suggests that respect for relational autonomy is not only important for the patient but also an integral part of the decision-making among healthy individuals. As Dove and Kelly⁹ highlighted, relationships are one of the crucial elements of relational autonomy; therefore, using different strategies based on relationships to promote relational autonomy among healthy individuals and illnesses is essential. For both healthy and ill people who are competent, HCPs and FMs should give them opportunities to select who, how, and when they want to engage in decision-making.³⁴ However, in the context of people with severe diseases, it’s required for HCPs to have a commitment of making appropriate judgments in accordance with patients’ intrinsic values and expectations to provide good care while respecting their relational autonomy.^32,64

Strengths and limitations

This is the first meta-synthesis exploring the demonstration of relational autonomy in the context of medical care decisions. The synthesis covers many types of medical care decisions among individuals with different health conditions, indicating that relational autonomy has been broadly applied in clinical settings. The results from the broad inclusion of clinics and diagnosis strengthen the crucial role of the relationship between individuals, families, and HCPs regardless of individuals' health conditions. Moreover, the current meta-synthesis employed a multi-perspective approach, including individuals using medical services, their FMs, and HCPs, to generate a comprehensive view to uncovering the social, personal, and relationships impact on individuals’ relational autonomy. The meta-synthesis was limited by only including articles available in English, which might lead to selection bias. Most selected studies were undertaken in Western countries, resulting in cultural underrepresentation as different cultures may respond differently in respecting an individual’s relational autonomy.

Conclusion and recommendations

Individuals receive multifaceted assistance during medical decision-making while facing many challenges that influence their ability to act autonomously. The result of the current meta-synthesis emphasizes that FMs and HCPs can be supportive or coercive. In supportive relationships, HCPs and FMs maintain individuals’ identities and rights, helping individuals make well-considered decisions congruent with their wishes and preferences. When there exists an imbalance of power between HCPs and individuals, as well as the undue influence of FMs, an individual’s relational autonomy can be restricted. However, gaining comprehensive information from different sources can strengthen intrinsic values and reinforce medical care decisions.

Future research is needed to investigate how to establish a supportive relationship between the individual and HCPs and avoid overestimating HCPs' voice that drives an individual’s choices and optimize this relationship to benefit individuals. Additionally, more focus is essential to the family's role in assisting relational autonomy demonstration in medical contexts. Regarding future practice, HCPs play an important role in helping identify individuals' needs and problems while providing sufficient information to promote their sense of control over their health and well-being. Fostering discussions among individuals, families, and HCPs should be arranged to promote each other’s values and strengthen relational autonomy.

Supplemental Material

Supplemental Material - Factors impacting the demonstration of relational autonomy in medical decision-making: A meta-synthesis

Supplemental Material for Factors impacting the demonstration of relational autonomy in medical decision-making: A meta-synthesis by Dung Le Thi, Shih-Chun Lin, Huang Mei-Chih, Sheng-Yu Fan, and Chi-Yin Kao in Nursing Ethics

Footnotes

Declaration of conflicting interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported by National Science and Technology Council (MOST111-2314-B-006-024).

ORCID iDs

Thi Dung Le

Shih-Chun Lin

Mei-Chih Huang

Sheng-Yu Fan

Chi-Yin Kao

Supplemental Material

Supplemental material for this article is available online.

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