On 2017 Jul 18, Mohamed Rady commented:

Kitzinger et al argued in favor of applying “the ‘holistic’ approach outlined in the Briggs judgment” to ascertain, in Court and ‘on the floor’, what in accordance with the Mental Capacity Act 2005 (MCA) ought to be considered a patient’s best-interest assessment.[1] They highlighted the significance of the Briggs judgment because of “the great weight Charles J gave the person’s own views, even when set against ‘sanctity of life’.” There are theoretical and practical problems with Kitzinger et al’s position.

First, it is incorrect to describe the Briggs case as the clash of ‘sanctity of life’ and ‘self-determination’. There was no self-determination because there was no advance directive that clearly expressed the preference that, if affected by a disorder of consciousness, assisted nutrition and hydration (ANH) is to be discontinued. It was a third-party determination of the acceptability of Paul Briggs’ future quality of life and judgment of what was to be in his best interests. Therefore, the Briggs case is the clash of ‘sanctity of life’ and ‘third-party determination’ of best interests of a disabled person. Kitzinger et al incorrectly labeled the holistic approach to the best interest standard as an extension of self-determination. [1] They validated their claim of superiority of this approach to a best-interest assessment over ‘sanctity of life’ by quoting an article from 1973 calling the concept of ‘sanctity of life’ “impossibly vague and misleading’.” [3] However, the concept of ‘best interests’ is no less vague than the concept of ‘sanctity of life’ in justifying treatment withdrawal. A best-interest assessment of the acceptability of future quality of life on behalf of a disabled person is subjective. Even with today’s dominance of principlism in ethics, none of the four principles (autonomy, beneficence, non-maleficence, and justice) are clear, unambiguous, and uncontested. For instance, the notion of autonomy, which constitutes the foundation underlying the moral and legal notion of the best-interest standard, has evolved over time and continues to do so with significant moral, legal, and social implications.[4] The question is not if treatment can be withdrawn but under which circumstances it is justified. In first-person decision-making, individuals have the right to refuse treatment either through in-person communication or, if unable to express their opinion, through clear expression of preferences of that particular treatment in advance directives. Considering the weight of such decision in life-sustaining treatment, it appears that the judgment in W v M & Ors (2011) requiring clear and convincing evidence that the person had specifically directed not to have ANH administered in case of the presence of a disorder of consciousness is indeed more consistent with the medical principle of first do-no-harm. In absence of an unambiguous, substantive conception of what constitutes ‘the best-interest’ of human beings, mandating clear and convincing evidence of a person’s wishes in matters of life and death reflects without a doubt commitment to both the principle of sanctity of life and that of respect for persons. As it stands, adherence to the ‘sanctity of life’ standard and practicing medicine in accordance with the Hippocratic Oath both uphold the moral obligation of practitioners to avoid inflicting harm on patients.

Second, as the concept of ‘best interests’ in MCA is grounded in a third-party rather a first-person real time determination of acceptability of future quality of life, its interpretation legitimizes also nonconsensual treatment withdrawal in persons with severe disabilities. Many survivors of serious illnesses adapt to their new reality, cope with severe disabilities, and are satisfied with their quality of life even if greatly diminished from the past. [5-8] Therefore, the reliance on previously held opinions can misrepresent real-time or future preferences of individuals with serious disabilities. As has been argued elsewhere, treatment withdrawal decisions based on third-party determination of best interests can result in fatal errors.[9] Although Kitzinger et al endorsed the introduction of a holistic approach to the third-party determination of best interests, they failed to provide a convincing rationale that it (1) provides a more reliable (and therefore a superior) instrument for making substitute end-of-life decisions, and (2) results in decisions that are more closely aligned with respect for autonomy. The basic tenet of “do-no-harm” in medicine appears to provide more practical guidance towards decision-making under these conditions.

Third, other commentators have asserted that the ‘sanctity of life’ value in medicine, commonly associated with commitment to religious values, should not be allowed to stonewall secular determination of best interests.[10] It is clear to many that withdrawing of ANH is the proximate cause of a pre-planned death and, thus, a form of physician-assisted death. In other cases, where a patient is dependent on both mechanical ventilation and ANH (e.g., The Supreme Court in the matter of Charlie Gard [2017] EWHC 972 (Fam); https://www.supremecourt.uk/news/latest-judgment-in-the-matter-of-charlie-gard.html), withdrawing these life-sustaining interventions will lead, for the same reasons, to an act of physician-assisted death. In reality, the observed clash is the consequence of secular intolerance and exclusion of equally respected religious values in a pluralistic society.

From a practical perspective, without additional legislative revisions in the MCA to protect religious values, the best-interest standard and a holistic approach to assessing these interests has now been transformed into a widening of a backdoor approach to justifying nonconsensual euthanasia of vulnerable individuals. The best-interests standard with an expanded domain of potential surrogate decision makers increases the potential for legitimizing a “kill switch” in the MCA. Finally, patients’ religious beliefs and values should be taken into account to ensure that surrogate decisions made reflect commitment to the respect for autonomy.

Mohamed Y. Rady, Joseph L. Verheijde,

REFERENCES [1] Kitzinger J, Kitzinger C, Cowley J. When ‘Sanctity of Life’ and ‘Self-Determination’ clash: Briggs versus Briggs [2016] EWCOP 53 – implications for policy and practice. J Med Ethics.2017; 43(7):446-449.

[2]Briggs v The Walton Centre NHS Trust & Another: [2017] WLR(D) 25, [2016] EWCOP 53 http://www.bailii.org/ew/cases/EWCOP/2016/53.html.

[3]Clouser K. "the sanctity of life": An analysis of a concept. Ann Intern Med.1973; 78(1):119-125.

[4]Saad TC. The history of autonomy in medicine from antiquity to principlism. Med Health Care Philos.2017; First Online:10 June 2017. DOI: 10.1007/s11019-017-9781-2.

[5]Antonak RF, Livneh H. Psychosocial adaptation to disability and its investigation among persons with multiple sclerosis. Soc. Sci. Med.1995; 40(8):1099-1108.

[6]Lulé D, Zickler C, Häcker S, Bruno MA, Demertzi A, Pellas F, et al. Life can be worth living in locked-in syndrome. Prog. Brain Res.2009; 177:339-351.

[7]Demertzi A, Jox RJ, Racine E, Laureys S. A European survey on attitudes towards pain and end-of-life issues in locked-in syndrome. Brain Inj.2014; 28(9):1209-1215.

[8]Buono VL, Corallo F, Bramanti P, Marino S. Coping strategies and health-related quality of life after stroke. Journal of Health Psychology.2017; 22(1):16-28.

[9]Napier S. Perception of Value and the Minimally Conscious State. HEC Forum.2015; 27(3):265-286.

[10]Brierley J, Linthicum J, Petros A. Should religious beliefs be allowed to stonewall a secular approach to withdrawing and withholding treatment in children? J Med Ethics.2013; 39(9):573-577. Disclosure: This comment is an edited version of the original Rapid Response published online in JME on 4 July 2017 [http://jme.bmj.com/content/43/7/446.responses]

On 2017 Jul 18, Mohamed Rady commented:

Kitzinger et al argued in favor of applying “the ‘holistic’ approach outlined in the Briggs judgment” to ascertain, in Court and ‘on the floor’, what in accordance with the Mental Capacity Act 2005 (MCA) ought to be considered a patient’s best-interest assessment.[1] They highlighted the significance of the Briggs judgment because of “the great weight Charles J gave the person’s own views, even when set against ‘sanctity of life’.” There are theoretical and practical problems with Kitzinger et al’s position.

First, it is incorrect to describe the Briggs case as the clash of ‘sanctity of life’ and ‘self-determination’. There was no self-determination because there was no advance directive that clearly expressed the preference that, if affected by a disorder of consciousness, assisted nutrition and hydration (ANH) is to be discontinued. It was a third-party determination of the acceptability of Paul Briggs’ future quality of life and judgment of what was to be in his best interests. Therefore, the Briggs case is the clash of ‘sanctity of life’ and ‘third-party determination’ of best interests of a disabled person. Kitzinger et al incorrectly labeled the holistic approach to the best interest standard as an extension of self-determination. [1] They validated their claim of superiority of this approach to a best-interest assessment over ‘sanctity of life’ by quoting an article from 1973 calling the concept of ‘sanctity of life’ “impossibly vague and misleading’.” [3] However, the concept of ‘best interests’ is no less vague than the concept of ‘sanctity of life’ in justifying treatment withdrawal. A best-interest assessment of the acceptability of future quality of life on behalf of a disabled person is subjective. Even with today’s dominance of principlism in ethics, none of the four principles (autonomy, beneficence, non-maleficence, and justice) are clear, unambiguous, and uncontested. For instance, the notion of autonomy, which constitutes the foundation underlying the moral and legal notion of the best-interest standard, has evolved over time and continues to do so with significant moral, legal, and social implications.[4] The question is not if treatment can be withdrawn but under which circumstances it is justified. In first-person decision-making, individuals have the right to refuse treatment either through in-person communication or, if unable to express their opinion, through clear expression of preferences of that particular treatment in advance directives. Considering the weight of such decision in life-sustaining treatment, it appears that the judgment in W v M & Ors (2011) requiring clear and convincing evidence that the person had specifically directed not to have ANH administered in case of the presence of a disorder of consciousness is indeed more consistent with the medical principle of first do-no-harm. In absence of an unambiguous, substantive conception of what constitutes ‘the best-interest’ of human beings, mandating clear and convincing evidence of a person’s wishes in matters of life and death reflects without a doubt commitment to both the principle of sanctity of life and that of respect for persons. As it stands, adherence to the ‘sanctity of life’ standard and practicing medicine in accordance with the Hippocratic Oath both uphold the moral obligation of practitioners to avoid inflicting harm on patients.

Second, as the concept of ‘best interests’ in MCA is grounded in a third-party rather a first-person real time determination of acceptability of future quality of life, its interpretation legitimizes also nonconsensual treatment withdrawal in persons with severe disabilities. Many survivors of serious illnesses adapt to their new reality, cope with severe disabilities, and are satisfied with their quality of life even if greatly diminished from the past. [5-8] Therefore, the reliance on previously held opinions can misrepresent real-time or future preferences of individuals with serious disabilities. As has been argued elsewhere, treatment withdrawal decisions based on third-party determination of best interests can result in fatal errors.[9] Although Kitzinger et al endorsed the introduction of a holistic approach to the third-party determination of best interests, they failed to provide a convincing rationale that it (1) provides a more reliable (and therefore a superior) instrument for making substitute end-of-life decisions, and (2) results in decisions that are more closely aligned with respect for autonomy. The basic tenet of “do-no-harm” in medicine appears to provide more practical guidance towards decision-making under these conditions.

Third, other commentators have asserted that the ‘sanctity of life’ value in medicine, commonly associated with commitment to religious values, should not be allowed to stonewall secular determination of best interests.[10] It is clear to many that withdrawing of ANH is the proximate cause of a pre-planned death and, thus, a form of physician-assisted death. In other cases, where a patient is dependent on both mechanical ventilation and ANH (e.g., The Supreme Court in the matter of Charlie Gard [2017] EWHC 972 (Fam); https://www.supremecourt.uk/news/latest-judgment-in-the-matter-of-charlie-gard.html), withdrawing these life-sustaining interventions will lead, for the same reasons, to an act of physician-assisted death. In reality, the observed clash is the consequence of secular intolerance and exclusion of equally respected religious values in a pluralistic society.

From a practical perspective, without additional legislative revisions in the MCA to protect religious values, the best-interest standard and a holistic approach to assessing these interests has now been transformed into a widening of a backdoor approach to justifying nonconsensual euthanasia of vulnerable individuals. The best-interests standard with an expanded domain of potential surrogate decision makers increases the potential for legitimizing a “kill switch” in the MCA. Finally, patients’ religious beliefs and values should be taken into account to ensure that surrogate decisions made reflect commitment to the respect for autonomy.

Mohamed Y. Rady, Joseph L. Verheijde,

REFERENCES [1] Kitzinger J, Kitzinger C, Cowley J. When ‘Sanctity of Life’ and ‘Self-Determination’ clash: Briggs versus Briggs [2016] EWCOP 53 – implications for policy and practice. J Med Ethics.2017; 43(7):446-449.

[2]Briggs v The Walton Centre NHS Trust & Another: [2017] WLR(D) 25, [2016] EWCOP 53 http://www.bailii.org/ew/cases/EWCOP/2016/53.html.

[3]Clouser K. "the sanctity of life": An analysis of a concept. Ann Intern Med.1973; 78(1):119-125.

[4]Saad TC. The history of autonomy in medicine from antiquity to principlism. Med Health Care Philos.2017; First Online:10 June 2017. DOI: 10.1007/s11019-017-9781-2.

[5]Antonak RF, Livneh H. Psychosocial adaptation to disability and its investigation among persons with multiple sclerosis. Soc. Sci. Med.1995; 40(8):1099-1108.

[6]Lulé D, Zickler C, Häcker S, Bruno MA, Demertzi A, Pellas F, et al. Life can be worth living in locked-in syndrome. Prog. Brain Res.2009; 177:339-351.

[7]Demertzi A, Jox RJ, Racine E, Laureys S. A European survey on attitudes towards pain and end-of-life issues in locked-in syndrome. Brain Inj.2014; 28(9):1209-1215.

[8]Buono VL, Corallo F, Bramanti P, Marino S. Coping strategies and health-related quality of life after stroke. Journal of Health Psychology.2017; 22(1):16-28.

[9]Napier S. Perception of Value and the Minimally Conscious State. HEC Forum.2015; 27(3):265-286.

[10]Brierley J, Linthicum J, Petros A. Should religious beliefs be allowed to stonewall a secular approach to withdrawing and withholding treatment in children? J Med Ethics.2013; 39(9):573-577. Disclosure: This comment is an edited version of the original Rapid Response published online in JME on 4 July 2017 [http://jme.bmj.com/content/43/7/446.responses]