Review Reports - Conscience at the End of Life

Round 1

Reviewer 1 Report

Comments and Suggestions for Authors

I think this paper has the potential to be an extremely useful one-stop-shop as a helpful and thoughtful introduction to this complicated topic. Conceptually I feel that all the necessary content required is present. The fact that the authors have recognized a (limited) role for the exercise of conscientious objection in the conclusion is quite reasonable. However, the author's recognition of this impresses on me the necessity for establishing some better examples of what they would agree upon to be canonical examples of legitimate conscientious objection. My first impression of many of the examples in the paper were that they were not close to being legitimate reasons to justify CI. In fact, they do some disservice to the paper as clinical readers will be distracted from matters at hand, and fixated on the problems. And many of the examples simple miss the target of being 'hard' problems, which, I will argue is what you want, particularly to draw the sympathy of non-philosopher clinical readers, who should be the target of the paper.

The authors are absolutely correct is proposing a nuanced but principled approach to dealing with claims to CI, in fact nothing is truer of clinical ethics cases than the observation that the devil resides in the details. So ultimately I think the clinical cases should perhaps start with something canonical, something the authors would ultimately agree should be considered a case of legitimate CI.

Initially I thought the PEG case would be it, but it went in the opposite direction. A more likely PEG scenario, in a similar presentation, would go like this: patient presents the same, and family and team come together. The attending tells the family (correctly and accurately) that dysphagia in association with advanced dementia is a marker of the end-stage of the disease. The inability to swallow safely results in unavoidable aspiration and subsequent pneumonia. Despite a PEG placement in the stomach, these patients lose continence in the stomach's sphincter and regurgitate stomach contents, continuing aspiration. The medical recommendation follows for careful hand feeding by mouth for comfort and no treatment of subsequent pneumonias. The family proclaim that they cannot abide the suggestion that grandma is 'starved to death' and insist on the PEG. (It could also be an NG tube request which is perhaps a better example as it is non surgical and quite ordinary and common treatment). The team know that the placement of the such tubes in these circumstances will not increase the comfort of the patient, in fact, it will cause significant suffering as well as the potentially requirement of chemical or physical restraint.

This could be a useful case as a physician vs family or even a case where the Attending physician agrees to the PEG out of frustration and unwillingness to stand up to the family, while the rest of the team is at odds with the decision, feeling they are forced now to do harm to their patient.

The reference to Arendt was quite relevant in the paper. Hospital settings mimic the precise structure of experiment shown to demonstrate the Milgram effect in the exercise of the obedience to authority study based on Arendt's book.

The clinical case also demonstrated the nuances involved in discriminating between sound clinical judgment and fiduciary advocacy often fueling actions that have a similar source as manifestations of conscience. Interestingly, when MAID legislation was created in Canada, the right of physicians to refuse as a matter of conscience, was included from the start. However, this concept has been used to overlook the fact that physicians had a prima-facie (Hippocratic) duty to Professionally abstain from killing their patients. Conscientious objection thus appears as a potential vestigial personality trait that the system must abide rather than presenting as a core ethical professional function of physicians in general.

I would like to hear how the authors consider the role of conscience within the broader spectrum of conscientiousness and whether it deserves central role as an ontological capacity of care. Or should we simply respect the concept of Conscientious objection as an aspect of an individual's culture like a requirement to pray or wearing a turban, for instance.

I feel like the adaptation of early examples to those more clearly sympathetic to the intuitions of readers as legitimate examples would serve a heuristic function as the paper unfolds in that as the philosophical discussions unfold, a reader might reflect back an test the sympathy evoked by intuitive examples. Perhaps this hearkens back to the early casuistry of bioethics but it also introduces good clinical reasoning skills and principles as being part of the effort to assess matters of conscience, for instance, applying a teleological framework around treatment to better assess the proportionate benefits and harms of a treatment or a refusal to treat. In reality, test of proportionality will guide clinical matters of conscience more likely than a doctor or nurse that fear of violating an underlying moral commitment.

Author Response

Comment 1: I think this paper has the potential to be an extremely useful one-stop-shop as a helpful and thoughtful introduction to this complicated topic. Conceptually I feel that all the necessary content required is present. The fact that the authors have recognized a (limited) role for the exercise of conscientious objection in the conclusion is quite reasonable. However, the author's recognition of this impresses on me the necessity for establishing some better examples of what they would agree upon to be canonical examples of legitimate conscientious objection. My first impression of many of the examples in the paper were that they were not close to being legitimate reasons to justify CI. In fact, they do some disservice to the paper as clinical readers will be distracted from matters at hand, and fixated on the problems. And many of the examples simple miss the target of being 'hard' problems, which, I will argue is what you want, particularly to draw the sympathy of non-philosopher clinical readers, who should be the target of the paper.

Response 1: We are grateful for this useful point – examples are needed of conscientious refusals that are clearly justified. This is rather challenging because such refusals would challenge our current standards of medical practice, and so would tend to be disputed. Even so, we have added two cases of what we believe to be conscientious refusal that are ethically warranted. One is a spinal injury case (beginning on line 76); the other is a case from the 1990s in New York state (beginning on line 154).

Comment 2: The authors are absolutely correct is proposing a nuanced but principled approach to dealing with claims to CI, in fact nothing is truer of clinical ethics cases than the observation that the devil resides in the details. So ultimately I think the clinical cases should perhaps start with something canonical, something the authors would ultimately agree should be considered a case of legitimate CI.

Response 2: Other cases have been added to illustrate appropriate conscientious refusals. The PEG-tube-in-advanced-dementia case is intended to illustrate a very different point: It’s an example of a conscientious commitment that should not be accommodated. So, we believe that it serves a useful purpose in its current form.

Comment 3: The reference to Arendt was quite relevant in the paper. Hospital settings mimic the precise structure of experiment shown to demonstrate the Milgram effect in the exercise of the obedience to authority study based on Arendt's book.

Response 3: This is an interesting question. We regard moral conscience as playing a significant role in shaping one’s character and identity. We believe we have addressed this in section 4 and do not see a pressing need to expand that discussion (particularly given the length of this manuscript as it stands).

Comment 4: I feel like the adaptation of early examples to those more clearly sympathetic to the intuitions of readers as legitimate examples would serve a heuristic function as the paper unfolds in that as the philosophical discussions unfold, a reader might reflect back and test the sympathy evoked by intuitive examples. Perhaps this hearkens back to the early casuistry of bioethics but it also introduces good clinical reasoning skills and principles as being part of the effort to assess matters of conscience, for instance, applying a teleological framework around treatment to better assess the proportionate benefits and harms of a treatment or a refusal to treat. In reality, test of proportionality will guide clinical matters of conscience more likely than a doctor or nurse that fear of violating an underlying moral commitment.

Response 4: This is an excellent point, and we have taken it into account. As noted above, we have added cases which meet this requirement.

Reviewer 2 Report

Comments and Suggestions for Authors

Dear editors/authors,

The topic of your paper is interesting because arise a well know problem for all the healthcare professionals that work in end of life.

Abstract:

- Lines 17-18, p.1: “Bear some of the resulting costs”: Please, could you present more argumentations to this point?

Introduction:

-Lines 25-26, p.1: I would recommend to add references and to give more argumentations to this point.

- Line 45, p.1: Extra space after the period.

- Lines 48-50, p.2: This sentence seems to contradict the previous one. If appropriateness is the criterion to withhold or withdraw the treatments to avoid overtreatment, this choice can be clinically and ethically appropriate. (please, see F. Nicoli, M. Picozzi, Killing or allowing someone to die: a difference defined exclusively by the criteria of “terminal”? Making decisions regarding a patient’s death. Medicina Historica, 2017; 1(1), 2017, 41-48).

-Lines 55-57, p. 2: Please, add more argumentation also considering the criterion of proportionality.

Refusals at the End of Life:

- Line 65, p.2: In 1998-1999 all studies referred to the procedure as ‘terminal sedation’. Enck R.E. has first introduced the concept of “terminal sedation” in the palliative care literature in 1991 (Henk H. et al., 2014 - Enck RE, 1991). In 2006-2008 83% of studies were using the term ‘palliative sedation’(M. Maltoni et al.,July 2013; Hasselaar JG et al., 2009).Today it is better to use the term “palliative sedation” to specify the goal of this end-of- life practice. Palliative sedation is a clinical procedure that is an integral part of the palliative care continuum and its ‘mission’ is to find a solution for a refractory symptom by reducing the level of consciousness only as much as needed.

- Lines 69-74, p.2: It is not clear why only morphine is used. Please, give more argumentations to this point

- Line 77, p 2: “Time-limited trial” or “Time limited treatment”? I would recommend to add in the references and to comment in the text the documents that regulates the use of long-term – short term treatment. So, the sentence between lines 84 and 85 could be better rewritten.

- Line 88, p.2: “Wishes” or “needs”?

Responding to refusal:

The different role of the conscience seems to be unclear from an ethical and deontological perspective.

At the beginning of this paragraph, as wrote at p.12 (lines 566-574), I would recommend to highlight the difference between the possibilities to override and to accommodate the refusals from a deontological point of view (a physician cannot arbitrarily refuse to offer treatments, but he/she can be conscientious objector, but only in some areas) and from the clinical ethics point of view (with regard to the criteria of appropriateness and proportionality of treatments).

- Line 103, p.3 and line 201, p.5: “we”, “you”? It is not clear. Please, revise the sentence and add more references.

- Line 221, p.5: I would recommend to add the criteria on which physician autonomy is based.

- Line 290, p.6: Please, add references.

- Lines 367-368, p.8, and line 439, p.9: “You”? Please, revise the sentence.

- Lines 396-397, p.8: Unreasonable position. is this sentence necessary?

- Line 523, p. 11: I would recommend to add also the deontological obligations.

- Line 524, p.11: “the nature of conscience”: I suggest to add a definition and references.

Obligations to Provide care

- Line 528, p.11: “fiduciary”: I would recommend to clarify the difference between the fiduciary and caregiver.

- Line 529 and 547, p.11: I would recommend to write “patient” or “person”, not “client”.

Conscience

- Line 657, p.13: “objectively”: following the etymology of the term “moral” and the Kennett suggestion (as reported at p. 13, lines 662-665), I suggest to write “intersubjective” as Donald Davidson suggests in his book “Subjective, Intersubjective, Objective”.

Author Response

Reviewer 2

Dear editors/authors,

The topic of your paper is interesting because arise a well know problem for all the healthcare professionals that work in end of life.

Abstract:

Comment 1: Lines 17-18, p.1: “Bear some of the resulting costs”: Please, could you present more argumentations to this point?

Response 1: We explain in some detail the reasons for this view, especially in Section 3.3 and the final paragraph of section 6. We do not think there is space, here in the abstract, to articulate these reasons.

Introduction:

Comment 2: Lines 25-26, p.1: I would recommend to add references and to give more argumentations to this point.

Response 2: We refer here to the history of conscientious refusal. As the reviewer requests here, we do explain this history in more detail in Section 3.1. To avoid redundancy, we are hesitant to elaborate further here in the introduction. However, we will be happy to add further detail here if the editor deems it appropriate.

Comment 3: Line 45, p.1: Extra space after the period.

Response 3: Thank you. This is fixed.

Comment 4: Lines 48-50, p.2: This sentence seems to contradict the previous one. If appropriateness is the criterion to withhold or withdraw the treatments to avoid overtreatment, this choice can be clinically and ethically appropriate. (please, see F. Nicoli, M. Picozzi, Killing or allowing someone to die: a difference defined exclusively by the criteria of “terminal”? Making decisions regarding a patient’s death. Medicina Historica, 2017; 1(1), 2017, 41-48).

Response 4: We do not see this sentence is contradicting the previous one. The sentence points to potentially negative consequences of permitting conscientious refusal; however, we are not implying here that these negative consequences will always occur or that they will always be decisive. We agree with the reviewer that refusal can be ethically appropriate in certain cases relating to the avoidance of overtreatment.

Comment 5: Lines 55-57, p. 2: Please, add more argumentation also considering the criterion of proportionality.

Response 5: We are not sure that we understand the reviewer’s request here. This sentence is not intended to articulate when conscientious refusal should and should not be permitted. Instead it simply articulates the situation a caregiver will find herself in when she is considering refusal. In effect, she will find herself having a hard moral decision to make: Either act in violation of her own moral judgment or conscientiously refuse to do so.

Refusals at the End of Life:

Comment 6: Line 65, p.2: In 1998-1999 all studies referred to the procedure as ‘terminal sedation’. Enck R.E. has first introduced the concept of “terminal sedation” in the palliative care literature in 1991 (Henk H. et al., 2014 - Enck RE, 1991). In 2006-2008 83% of studies were using the term ‘palliative sedation’(M. Maltoni et al.,July 2013; Hasselaar JG et al., 2009).Today it is better to use the term “palliative sedation” to specify the goal of this end-of- life practice. Palliative sedation is a clinical procedure that is an integral part of the palliative care continuum and its ‘mission’ is to find a solution for a refractory symptom by reducing the level of consciousness only as much as needed.

Response 6: We agree that the usual terminology here would be “palliative sedation,” but, as the reviewer points out, this is sometimes a temporary measure used until the cause of the refractory symptoms is removed or can be managed without sedation. However, when sedation is used at the end of life (often without artificial nutrition or hydration), the term “continuous deep sedation” might be more appropriate. See, for instance, Heijltjes MT, van Thiel GJ, Rietjens JA, van der Heide A, et al. Continuous deep sedation at the end of life: a qualitative interview-study among health care providers on an evolving practice. BMC Palliat Care. 2023 Oct 26;22(1):160. We believe that “terminal sedation” is not uncommon in the relevant literature, and we have added “continuous deep sedation at the end of life” to help clarify our intent.

Comment 7: Lines 69-74, p.2: It is not clear why only morphine is used. Please, give more argumentations to this point

Response 7: The reviewer is right to note the clinical implausibility of this scenario. This is intended to be a hypothetical example of a case involving (terminal) palliative sedation. What is crucial to the case is not which pain medicine is used. Rather, it is intended to refer to a situation in which alleviating a patient’s suffering to an acceptable level may well cause the patient’s death. We imagine here a clinician who hesitates here because they regard it as morally wrong to do anything that would actively cause the patient’s death. It is this author’s [RB’s] impression and experience, though, that opioids are commonly used for pain control near the end of life. We have replaced “morphine” with “opioid analgesics.” Is that an improvement?

Comment 8: Line 77, p 2: “Time-limited trial” or “Time limited treatment”? I would recommend to add in the references and to comment in the text the documents that regulates the use of long-term – short term treatment. So, the sentence between lines 84 and 85 could be better rewritten.

Response 8: The key point in this case is that a brief attempt would be made to get this patient through the crisis, but that this effort would be halted if it was not successful. The patient and family acknowledged that his disease was end-stage and that he might not survive this hospitalization, but wanted to make one last try to keep him alive a little longer. We don’t see that adding more references would help this case make its point.

Comment 9: Line 88, p.2: “Wishes” or “needs”?

Response 9: We believe that “wishes” is appropriate here. We are talking about the patient’s choice of treatment; this may not always match with what the patient needs.

Responding to refusal:

Comment 10: The different role of the conscience seems to be unclear from an ethical and deontological perspective.

Response 10: We are unfamiliar with this way of drawing a distinction between deontological ethics and clinical ethics. It is our understanding that ethical issues can be framed using a variety of ethical theories and principles, including deontological theories, consequentialist theories, virtue theories, feminist ethics, etc. From our standpoint, we do not see what distinction you wish to draw or what it would add to this discussion.

Comment 11: Line 103, p.3 and line 201, p.5: “we”, “you”? It is not clear. Please, revise the sentence and add more references.

Response 11: Good point. The responses presented in this section that includes line 103 would be made by institutions or legal authorities. This sentence has been revised to make that clear. The sentence at line 201 is a general statement about all moral persons. We believe the context makes that sufficiently clear, but would happily consider any suggested emendation.

Comment 12: Line 221, p.5: I would recommend to add the criteria on which physician autonomy is based.

Response 12: “Autonomous physician” here means a physician who is an autonomous moral agent; that is, one who has the cognitive capacity for moral reflection and self-government. This is the sense of autonomy commonly used in discussions of medical ethics, particularly as influenced by the work of Beauchamp and Childress [see their Principles of Medical Ethics, 5^th ed. Oxford Univ Pr, 2001]. Presenting a more general account of autonomy is beyond the scope of this paper. We do not intend “autonomous” to indicate anything about practice guidelines, clinical oversight, or other factors that might limit a physician’s practice of medicine.

Comment 13: Line 290, p.6: Please, add references.

Response 13: We agree that this claim does require citing sources. We have cited an article from JAMA article from 2023 that reviews such laws.

Comment 14: Lines 367-368, p.8, and line 439, p.9: “You”? Please, revise the sentence.

Response 14: This has been revised to omit the pronoun.

Comment 15: Lines 396-397, p.8: Unreasonable position. is this sentence necessary?

Response 15: This position is, indeed, unreasonable, but it is useful as a way of considering the conceptual boundaries of proposed laws or policies. We note that this example is borrowed from another author writing in this area.

Comment 16: Line 523, p. 11: I would recommend to add also the deontological obligations.

Response 16: We encounter again the confusion seen in comment/response 10, above. Our use of “moral obligations” here would, we think, ordinarily be interpreted as including those described in consequentialist, deontological, and virtue-based moral theories.

Comment 17: Line 524, p.11: “the nature of conscience”: I suggest to add a definition and references.

Response 17: The nature of conscience is discussed at length in section 5. The definitions and references can be found there.

Obligations to Provide care

Comment 18: Line 528, p.11: “fiduciary”: I would recommend to clarify the difference between the fiduciary and caregiver.

Response 18: We are not sure what clarification the reviewer has in mind. Physicians have fiduciary responsibilities regarding their patients. Is the suggestion here that these responsibilities differ from those of other healthcare professionals?

Comment 19: Line 529 and 547, p.11: I would recommend to write “patient” or “person”, not “client”.

Response 19: This change has been made.

Conscience

Comment 20: Line 657, p.13: “objectively”: following the etymology of the term “moral” and the Kennett suggestion (as reported at p. 13, lines 662-665), I suggest to write “intersubjective” as Donald Davidson suggests in his book “Subjective, Intersubjective, Objective”.

Response 20: This change has been made.

Reviewer 3 Report

Comments and Suggestions for Authors

Dear authors:

Congratulations on your work.

Although ethical issues are always veru important to discuss, your article doesn't add anything new or original regarding this topic. This as a theoretical article that only reflect your opinion.

I would suggest that using the same theme you could do a systematic review with a proper methodology. It would be more interesting and original.

Best regards.

Comments on the Quality of English Language

Minor editing of English language required.

Author Response

Comment: Although ethical issues are always veru important to discuss, your article doesn't add anything new or original regarding this topic. This as a theoretical article that only reflect your opinion.

I would suggest that using the same theme you could do a systematic review with a proper methodology. It would be more interesting and original.

Response:

It is clear that there is no way to accommodate this reviewer’s suggestion without, in effect, abandoning this articles and starting from scratch. However, the reviewer’s comments appears to be based on a misunderstanding. The reviewer seems to suggest that we carry out a descriptive, empirical review of how conscientious refusals are handled in end-of-life care. But our review here is not empirical but philosophical. As philosophers, we are primarily concerned not with the empirical question of how such refusals are currently handled but with the normative question of how they ought to be handled. This normative question cannot be investigated with an empirical methodology.

Best regards.