Relational autonomy in end-of-life care ethics: a contextualized approach to real-life complexities

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Abstract

Background

Respect for autonomy is a paramount principle in end-of-life ethics. Nevertheless, empirical studies show that decision-making, exclusively focused on the individual exercise of autonomy fails to align well with patients’ preferences at the end of life. The need for a more contextualized approach that meets real-life complexities experienced in end-of-life practices has been repeatedly advocated. In this regard, the notion of ‘relational autonomy’ may be a suitable alternative approach. Relational autonomy has even been advanced as a foundational notion of palliative care, shared decision-making, and advance-care planning. However, relational autonomy in end-of-life care is far from being clearly conceptualized or practically operationalized.

Main body

Here, we develop a relational account of autonomy in end-of-life care, one based on a dialogue between lived reality and conceptual thinking. We first show that the complexities of autonomy as experienced by patients and caregivers in end-of-life practices are inadequately acknowledged. Second, we critically reflect on how engaging a notion of relational autonomy can be an adequate answer to addressing these complexities. Our proposal brings into dialogue different ethical perspectives and incorporates multidimensional, socially embedded, scalar, and temporal aspects of relational theories of autonomy. We start our reflection with a case in end-of-life care, which we use as an illustration throughout our analysis.

Conclusion

This article develops a relational account of autonomy, which responds to major shortcomings uncovered in the mainstream interpretation of this principle and which can be applied to end-of-life care practices.

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Most cited references 66

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Desire for information and involvement in treatment decisions: elderly cancer patients' preferences and their physicians' perceptions.

Deborah Schrag, Elena Elkin, Ephraim Casper … (2007)

Shared decision making is a tenet of contemporary medicine and oncology practice. How involved elderly patients want to be in making treatment decisions and how physicians perceive patient preferences for such involvement are uncertain. In structured interviews about multiple facets of chemotherapy treatment decision making, we asked patients age 70 years and older with a recent diagnosis of metastatic colorectal cancer (CRC) about their preferences for prognostic information and for involvement in treatment decision making. We also asked treating oncologists (n = 19) to describe their perceptions of patient preferences. Information and decision-making preferences were evaluated in relation to sociodemographic and clinical characteristics. Seventy-three patients age 70 to 89 years completed the study interview within 16 weeks of metastatic CRC diagnosis. Most patients (n = 70; 96%) had decided to receive chemotherapy and 61 had initiated treatment. Relatively few (n = 32; 44%) wanted information about expected survival when they made a treatment decision. Preference for prognostic information was more common among men than women (56% v 29%; P < .05). About half of the patients (n = 38; 52%) preferred a passive role in the treatment decision-making process. Physician perceptions were concordant with patient preferences for information in 44% of patient-physician pairs and for decision control in 41% of patient-physician pairs. For older patients with advanced CRC, preferences for prognostic information and for an active role in treatment decision making are not easily predictable. Physicians' perceptions are often inconsistent with patients' stated preferences. Explicit discussion of preferred decision-making styles may improve patient-physician encounters.

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Relational autonomy or undue pressure? Family's role in medical decision-making.

Anita Ho (2008)

The intertwining ideas of self-determination and well-being have received tremendous support in western bioethics. They have been used to reject medical paternalism and to justify patients' rights to give informed consent (or refusal) and execute advanced directives. It is frequently argued that everyone is thoroughly unique, and as patients are most knowledgeable of and invested in their own interests, they should be the ones to make voluntary decisions regarding their care. Two results of the strong focus on autonomy are the rejection of the image of patients as passive care recipients and the suspicion against paternalistic influence anyone may have on patients' decision-making process. Although the initial focus in western bioethics was on minimizing professional coercion, there has been a steady concern of family's involvement in adult patients' medical decision-making. Many worry that family members may have divergent values and priorities from those of the patients, such that their involvement could counter patients' autonomy. Those who are heavily involved in competent patients' decision-making are often met with suspicion. Patients who defer to their families are sometimes presumed to be acting out of undue pressure. This essay argues for a re-examination of the notions of autonomy and undue pressure in the contexts of patienthood and relational identity. In particular, it examines the characteristics of families and their role in adult patients' decision-making. Building on the feminist conception of the relational self and examining the context of contemporary institutional medicine, this paper argues that family involvement and consideration of family interests can be integral in promoting patients' overall agency. It argues that, in the absence of abuse and neglect, respect for autonomy and agency requires clinicians to abide by patients' expressed wishes.

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Does written informed consent adequately inform surgical patients? A cross sectional study

Erminia Agozzino, Sharon Borrelli, Mariagrazia Cancellieri … (2019)

Background Informed consent (IC) is an essential step in helping patients be aware of consequences of their treatment decisions. With surgery, it is vitally important for patients to understand the risks and benefits of the procedure and decide accordingly. We explored whether a written IC form was provided to patients; whether they read and signed it; whether they communicated orally with the physician; whether these communications influenced patient decisions. Methods Adult postsurgical patients in nine general hospitals of Italy’s Campania Region were interviewed via a structured questionnaire between the second and seventh day after the surgery at the end of the first surgical follow up visit. Physicians who were independent from the surgical team administered the questionnaire. Results The written IC form was given to 84.5% of those interviewed. All recipients of the form signed it, either personally or through a delegate; however, 13.9% did not know/remember having done so; 51.8% said that they read it thoroughly. Of those who reported to have read it, 90.9% judged it to be clear. Of those receiving the written consent form, 52.0% had gotten it the day before the surgery at the earliest 41.1% received it some hours or immediately before the procedure. The written IC form was explained to 65.6% of the patients, and 93.9% of them received further oral information that deemed understandable. Most attention was given to the diagnosis and the type of surgical procedure, which was communicated respectively to 92.8 and 88.2% of the patients. Almost one in two patients believed that the information provided some emotional relief, while 23.2% experienced increased anxiety. Younger patients (age ≤ 60) and patients with higher levels of education were more likely to read the written IC form. Conclusions The written IC form is not sufficient in assuring patients and making them fully aware of choices they made for their health; pre-operative information that was delivered orally better served the patients’ needs. To improve the quality of communication we suggest enhancing physicians’ communication skills and for them to use structured conversation to ensure that individuals are completely informed before undergoing their procedures. Electronic supplementary material The online version of this article (10.1186/s12910-018-0340-z) contains supplementary material, which is available to authorized users.

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Author and article information

Contributors

Carlos Gómez-Vírseda:

ORCID: http://orcid.org/0000-0002-4801-7157

carlos.gomezvirseda@student.kuleuven.be

Yves de Maeseneer: yves.demaeseneer@kuleuven.be

Chris Gastmans: chris.gastmans@kuleuven.be

Journal

Journal ID (nlm-ta): BMC Med Ethics

Journal ID (iso-abbrev): BMC Med Ethics

Title: BMC Medical Ethics

Publisher: BioMed Central (London )

ISSN (Electronic): 1472-6939

Publication date (Electronic): 30 June 2020

Publication date PMC-release: 30 June 2020

Publication date Collection: 2020

Volume: 21

Electronic Location Identifier: 50

Affiliations

[1 ]GRID grid.5596.f, ISNI 0000 0001 0668 7884, Centre for Biomedical Ethics and Law, , KU Leuven, ; Kapucijnenvoer 35/3, 3000 Leuven, Belgium

[2 ]GRID grid.5596.f, ISNI 0000 0001 0668 7884, Faculty of Theology and Religious Studies (Theological and Comparative Ethics), , KU Leuven, ; Sint-Michielsstraat 4 - box 3101, B-3000 Leuven, Belgium

[3 ]GRID grid.5596.f, ISNI 0000 0001 0668 7884, Centre for Biomedical Ethics and Law, , KU Leuven, ; Kapucijnenvoer 35 blok d - box 7001, 3000 Leuven, Belgium

Author information

Carlos Gómez-Vírseda http://orcid.org/0000-0002-4801-7157

Article

Publisher ID: 495

DOI: 10.1186/s12910-020-00495-1

PMC ID: 7325052

PubMed ID: 32605569

SO-VID: 44b176a1-aff6-48f8-8213-b7bf81ca891f

License:

Open AccessThis article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/. The Creative Commons Public Domain Dedication waiver ( http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data.

History

Date received : 8 May 2020

Date accepted : 23 June 2020

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ScienceOpen disciplines: Medicine

Keywords: euthanasia,relational autonomy,decision making,end-of-life,medical ethics,palliative care,patient preference,advance care planning

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ScienceOpen disciplines: Medicine

Keywords: euthanasia, relational autonomy, decision making, end-of-life, medical ethics, palliative care, patient preference, advance care planning

Relational autonomy in end-of-life care ethics: a contextualized approach to real-life complexities

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Most cited references 66

Desire for information and involvement in treatment decisions: elderly cancer patients' preferences and their physicians' perceptions.

Relational autonomy or undue pressure? Family's role in medical decision-making.

Does written informed consent adequately inform surgical patients? A cross sectional study

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