Caregivers and Family Members’ Vulnerability in End-of-Life Decision-Making: An Assessment of How Vulnerability Shapes Clinical Choices and the Contribution of Clinical Ethics Consultation

Round 1

Reviewer 1 Report

This study aims to assess the contribution of CEC in determining the relationship between the concept of vulnerability and the ethical challenges faced by HCPs when the wishes of patients and family members/significant others misalign. It further  aims to determine the role of CEC in assisting HCPs to face these difficult ethical conundrums. The authors concluded that CEC is an effective means for accompanying different parties toward a good choice as it promotes the therapeutic relationship and contributes to improving the quality of patient care by deepening the ethical awareness of all parties involved.

The authors of this study should have further addressed the issue of patient autonomy. Consider the first case, for example. The authors wrote: "The first case involved friends that the patient trusted completely. Because friends defended an abstract, untrue idea of hospice and palliative care, this undermined shared decision-making between the patient and the physician team." So, what is the place of the patient's autonomy in this case? Unless the patent's autonomy is compromised by illness (which doesn't appear to be the case in this study), ultimately it is the patient who should decide what they want. So, the issue of patient autonomy needs to be addressed in this study.

Author Response

RE: Caregivers and family members’ vulnerability in end-of-life decision-making: An assessment of how vulnerability shapes clinical choices and of the contribution of clinical ethics consultation

Point-by-point answer to Reviewers’ comments

Reviewer 1

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This study aims to assess the contribution of CEC in determining the relationship between the concept of vulnerability and the ethical challenges faced by HCPs when the wishes of patients and family members/significant others misalign. It further aims to determine the role of CEC in assisting HCPs to face these difficult ethical conundrums. The authors concluded that CEC is an effective means for accompanying different parties toward a good choice as it promotes the therapeutic relationship and contributes to improving the quality of patient care by deepening the ethical awareness of all parties involved.

R: We agree with the Reviewer’s summary.

The authors of this study should have further addressed the issue of patient autonomy. Consider the first case, for example. The authors wrote: "The first case involved friends that the patient trusted completely. Because friends defended an abstract, untrue idea of hospice and palliative care, this undermined shared decision-making between the patient and the physician team." So, what is the place of the patient's autonomy in this case? Unless the patent's autonomy is compromised by illness (which doesn't appear to be the case in this study), ultimately it is the patient who should decide what they want. So, the issue of patient autonomy needs to be addressed in this study.

R: We thank the Reviewer for the insightful comment. We agree that the issue of patient autonomy needs to be addressed more thoroughly in our study. To comply with the Reviewer’s concerns, we have added the following sentences: “Based on the principle of respect for patient autonomy, the acquisition of the patient’s written or verbal consent is mandatory prior to performing any medical treatment. However, the patient's right to choose regarding his/her health and care pathway may be influenced by his/her interpersonal relationships with the other individuals involved in the clinical case” (Marked version: Introduction section, Page 2, Lines 16-19). In addition, we have integrated the following paragraph: “In this case, the patient's decision-making autonomy is significantly affected by his interpersonal relationships with significant others. For instance, the patient is strongly influenced by the medically competent, but non-specialist judgments of his friends; therefore, he does not de facto self-determine decisions regarding his treatments (27). Given the patient’s vulnerability, to ensure the patient’s decisional autonomy about his care pathway requires the attending palliative care physician to intervene with the patient’s friends” (Marked version: Discussion section, Page 6, Lines 20-25).

Reviewer 2 Report

Dear authors,

It is a well-written manuscript on the importance of clinical ethics consultation.

It explains the issue in detail using two cases. Although there are legal differences between countries, this study will be very informative for international readers as it discusses shared decision-making, quality of end-of-life care, involvement of patients' families in the process, and core ethical values.

I have some suggestions for corrections to make it easier to understand; I present them in the attached file.

Kind regards.

Comments for author File: Comments.pdf

Author Response

RE: Caregivers and family members’ vulnerability in end-of-life decision-making: An assessment of how vulnerability shapes clinical choices and of the contribution of clinical ethics consultation

Point-by-point answer to Reviewers’ comment

Reviewer 2

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Dear authors,

It is a well-written manuscript on the importance of clinical ethics consultation.

It explains the issue in detail using two cases. Although there are legal differences between countries, this study will be very informative for international readers as it discusses shared decision-making, quality of end-of-life care, involvement of patients' families in the process, and core ethical values.

I have some suggestions for corrections to make it easier to understand; I present them in the attached file.

Kind regards.

R: We thank the Reviewer for the comment. Based on the Reviewer’s suggestions, we have modified the manuscript as follows. In the amended version, we have rephrased the sentence on Page 1 as follows “Based on the principle of respect for patient autonomy, the acquisition of the patient’s written or verbal consent is mandatory prior to performing any medical treatment. However, the patient's right to choose regarding his/her health and care pathway may be influenced by his/her interpersonal relationships with the other individuals involved in the clinical case” (Marked version: Introduction section, Page 2, Lines 16-19). In Case Vignette 1, we have corrected the punctuation as per the Reviewer’s recommendation. In Table A1, the extended version of “EC” is reported in the Table’s footnotes. In Table 1, we have added “values” and “trust” as suggested.