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Response
Precedent autonomy should be respected in life-sustaining treatment decisions Allison Leslie Hebron,1 Summer McGee2 ABSTRACT In the 2011 landmark case of W v M, the English Court of Protection ruled that it was unlawful to withdraw artificial nutrition and hydration from a woman who had been in a minimally conscious state for 8 years. From the perspective of the court, the absence of a written advance directive negated the woman’s previous, autonomous interests and, consequently, emphasis was given to her current welfare and well-being. While life itself is a moral good, prolonging life for a person in regular pain with no hope of recovering to a more complete state of awareness simply because that person only verbalized her wishes about her treatment decisions seems to drastically undervalue the principle of autonomy. We refute the notion that it is the role of the court to prolong life insofar as it can and argue that withholding and withdrawing life sustaining technologies from patients in a minimally conscious state can be ethically justified.
In the 2011 landmark case of W v M, the English Court of Protection ruled that it was unlawful to withdraw artificial nutrition and hydration from a woman (M) who had been in a minimally conscious state for 8 years.1 By relying on the sanctity of life principle, the Court’s ruling clearly favours the preservation of life in the absence of an advance directive regardless of a person’s previously, albeit verbally, expressed wishes. After a thorough analysis of the legal considerations and ethical issues influencing the Court’s decision, JC Sheather explores the question of whether the former desires of a once-autonomous individual should be respected in treatment decision-making once competency has been lost.2 3 Sheather’s assessment 1
Neiswanger Institute for Bioethics, Stritch School of Medicine, Loyola University Chicago, Maywood, Illinois, USA; 2Department of Public Management, College of Business, University of New Haven, West Haven, Connecticut, USA Correspondence to Allison Leslie Hebron, Neiswanger Institute for Bioethics, Stritch School of Medicine, Loyola University Chicago, 2160 South First Avenue, Maywood, IL 60153, USA; ahebron311@ gmail.com
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maintains the Court’s ruling that minimally conscious individuals retain some capacity to develop interests and gain pleasure from certain activities and, as such, previously verbalised wishes about treatment preferences that shorten their lives should not be upheld. We refute the notion that it is the role of the court to prolong life insofar as it can and argue that withholding and withdrawing life-sustaining technologies from patients in a minimally conscious state can be ethically justified.
BIOLOGICAL VERSUS PERSONAL DEATH Sheather begins with an overview of the differences between biological death and personal death. Thanks to medical advances such as mechanical ventilation, artificial hydration and nutrition, and even antibiotics, the ability to maintain and prolong life to a limited extent, in some circumstances, has become a reality. As a result, definitions of death have been refined to reflect the ability of a human body to remain viable in the absence of higher level cognitive thinking and awareness. In this regard, a minimally conscious state is defined ‘by the presence of inconsistent but reproducible goal-directed behaviors (e.g., response to command, verbalizations, visual pursuit, etc...)’.4 This condition can be contrasted to a persistent vegetative state which is characterised by a return of arousal without signs of awareness. Sheather aptly states that ‘the strong challenge presented by the question of precedent autonomy largely arises when the expressed interests of the former person conflict with the contemporaneous interests of the biological self which has to a greater or lesser extent outlived the person previously inhabiting it’.3 He goes on to explore the concept of identity and the ways in which our desires and interests can shift over time allowing new priorities to emerge. With regard to his example of a person with Alzheimer’s, it is understandable how a gradual decline of mental faculties can enable one’s interests and enjoyments to shift over time. Sheather asks ‘why should my former wishes, based upon values and desires I may no longer recognize, be determinative?’3
We would like to propose the opposite perspective on this question: Why should not my former wishes be determinative? While the Alzheimer’s example has merit, it does not parallel M’s situation; she did not slowly slide into a mental state that, while diminished, still allowed her basic skills such as speech, mobility, the ability to connect with loved ones and some capacity for planning and execution. Rather, she was immediately thrust into an existence that lacked all aspects of awareness and interaction with her environment except for a few basic motor skills such as tracking movement with her eyes. While there is no easy answer to either question, failure to address the second question weakens Sheather’s analysis of which interests ( prior wishes or current welfare issues) should take precedent when capacity is lost.
EXPERIENTIAL VERSUS CRITICAL INTERESTS Sheather goes on to explore Ronald Dworkin’s ideas about experiential interests versus critical interests. Simply stated, experiential interests are those interests we hold simply because the activity is pleasurable, such as hiking or cooking, while critical interests are those that give our life meaning and allow us to shape and connect our experiences in a personal way. Quality of life, including end-of-life care, is paramount to our critical interests. Sheather misses an opportunity to connect the link between autonomy and critical interests to M’s situation. For example, he quotes Dworkin: ‘Recognizing an individual right of autonomy makes self-creation possible. It allows for us to be responsible for shaping our lives to our own…distinctive personality’.3 In her current state, M lacks the capabilities that Dworkin associates with our ability to define who we are and find meaning in life. As such, M can no longer induce meaning and coherence from her existence. This is also true for patients in a persistent vegetative state—an existence that M said she would not want.
THE MENTAL CAPACITY ACT In order to fully appreciate the nuances and consequences of the ruling in W v M, it is important to understand the Mental Capacity Act (MCA) that governs treatment decision-making in England and Wales for adults who lack the mental capacity to make decisions on their own behalf. Under the MCA, decisions made on behalf of another person must be made in his or her ‘best interests’ which can include past and present desires, beliefs and values, as well as the views of
Hebron AL, et al. J Med Ethics October 2014 Vol 40 No 10
Downloaded from http://jme.bmj.com/ on March 7, 2015 - Published by group.bmj.com
Response any adults named by the individual or involved in caring for the person.5 In order to be taken into consideration, any desire or wish of an individual must be documented in writing. Importantly, the MCA does not fully support a ‘substituted judgment’ approach that would allow family members and caregivers to put themselves in the position of incapacitated individual and, based on their familiarity with the person, decide what he or she would have wanted. Rather, under a best interests approach, a person’s known (written) previous wishes are balanced against more objective factors regarding the welfare and well-being of the current, incapacitated person. While M lacked a written advance directive, family members stated that she had previously expressed her desire to not live like someone in a persistent vegetative state and voiced her opinion that someone in that state should be allowed to die. Counsel for M argued that her previously verbalised wishes should be the decisive factor in this case rather than the sanctity of life principle, which, according to Sheather, purports that every act or omission of action that causes death goes against the dignity of human life and is ethically unjustifiable.3 Counsel for M did consider the question of whether her current wishes and desires might be different from her wishes when she had capacity. However, they argue that her disability is so severe and her perceptions so minimal that, in her present state, she is incapable of sustained, autonomous thought. Consequently, her previous wishes should guide her treatment plan.1 When defining the sanctity of life principle, Sheather misses an opportunity to explore the fundamental differences between ‘cause’ and ‘allow’ with regard to death ensuing from the removal of lifesustaining technologies. Withdrawing artificial hydration and nutrition from a person in M’s condition does not cause death, but, rather, allows the natural disease progression to take place. In situations such as M’s, medical technology, at best, will slow or delay the dying process—a process that would have occurred more quickly in ages prior to the advent of current technology. In this regard, removing life-sustaining technologies from M would not violate the sanctity of life principle as Sheather defines it since the withdrawal of care would allow natural death to occur; it would not be the cause of her death. Consequently, the aforementioned application of the sanctity of life principle to M’s case seems to be arbitrary and lack a comprehensive understanding of the principle’s tenets. Hebron AL, et al. J Med Ethics October 2014 Vol 40 No 10
Best interests approach From the court’s perspective, the absence of a written advance directive negates her previous, autonomous interests and, consequently, emphasis should be given to her current welfare and well-being. In other words, by using a ‘best interests’, rather than a substituted judgment approach, the Court relied on the sanctity of life principle and ruled that prolonging life was in M’s (current) best interests. Sheather makes an interesting observation that ‘substituted judgment is more respectful of critical interests and it is difficult to imagine the judge in M reaching the same decision under such a regime’.3 In other words, if the Court had tried to determine the choice that M would have made had she not been incapacitated (instead of relying on what action would be in her best interest given her current state), it is likely that the Court would have ruled that it is lawful to remove artificial nutrition and hydration from a person in a minimally conscious state who is otherwise stable. However, the MCA states that a person’s past wishes and desires can be taken into account, but they will not be determinative. This seems to fly in the face of the principle of autonomy: by merely acknowledging a person’s past wishes rather than giving them significant weight, the MCA places emphasis on the sanctity of life principle over the principle of autonomy. Since the Court followed a ‘best interests’ perspective, the advantages of withdrawing artificial nutrition and hydration were compared with the advantages of continuing the treatment. While M had previously made comments that she would not like to live in a vegetative state, the Court noted that she did not have an advance directive and never voiced her opinion regarding life in a minimally conscious state. Again, Sheather misses an opportunity to link the Court’s assessment to Dworkin’s idea of critical interests. While being in a persistent vegetative state differs clinically from being in a minimally conscious state, the personal existence in these states can be comparable with regard to critical interests. For example, a patient in either state lacks critical thinking skills and no longer has the ability to find meaning and coherence in daily life. While the clinical characteristics of the two states are different, some may believe that both conditions have the same quality of life. Previous research has been conducted to increase our understanding of the varying attitudes towards patients in states of impaired consciousness. Interestingly,
while moral principles indicate the appropriateness of treatment withdrawal, the clinical characteristics of the different pathological states do not significantly impact decision-making.6 In other words, people do not rely on the clinical differences between a persistent vegetative state and a minimally conscious state to determine whether or not they would request the removal of life-sustaining technologies in these situations. Rather, they rely on their personal convictions and moral beliefs. This is an important insight that gives new meaning to M’s precedent desire to not exist like a person in a persistent vegetative state. It is important to consider these statements as expressions of closely-held values rather than delineations of clinical states of consciousness.
Determining bests interests When determining M’s best interests, the Court also took into account her continued suffering; testimony from M’s caregivers provides perspective that she is in a regular amount of pain and discomfort. One caregiver reported that M ‘had marked hypersensitivity and was experiencing a significant level of discomfort and, on occasions, pain. She confirmed that there was no realistic possibility of recovery and concluded that, in her opinion, it would be appropriate to withdraw artificial nutrition and hydration to allow M to die in dignity’.1 The sanctity of life principle does uphold the notion that there are occasions in which it would be within the best interest of the individual to remove lifesustaining technologies. Examples include situations in which the treatment is futile or cases where treatment caused the individual significant, frequent pain and discomfort. On the other hand, the sanctity of life principle will be upheld when there is ‘demonstrable evidence of some consciousness’. While M demonstrated an intermittent, yet minimal level of consciousness, several caregivers reported that she was in regular pain. Furthermore, the continuation of life-sustaining technologies would seem to be futile in M’s case. Given that she had been in a minimally conscious state for 8 years, one could argue that continuing to provide her with artificial nutrition and hydration would constitute a futile treatment as there is an unlikely chance of recovery. Notably, the Court seems to overlook a testimony from one of M’s caregivers regarding her diagnosis of being in a minimally conscious state. This individual reported, ‘M’s state was at the lowest level within that category, in effect on the border of the 715
Downloaded from http://jme.bmj.com/ on March 7, 2015 - Published by group.bmj.com
Response vegetative state’.1 Clearly, as with many clinical conditions, there is a continuum of diagnoses; there is not always a definitive line between the various disorders of consciousness. This fact seems to have been undervalued in Sheather’s analysis, as well as during the Court’s assessment of the balance between pleasures and pains in M’s existence.
SHOULD PRECEDENT AUTONOMY DECISIONS BE DETERMINATIVE? Sheather goes on to explore the quality of evidence that would be deemed sufficient proof to allow precedent autonomy decisions to be determinative and poses the question: ‘What quality of evidence, other than that provided by an advance decision, would constitute sufficient proof that the individual clearly wanted the decision to be respected?’3 The fact that M had referenced a specific situation in which a person was in a persistent vegetative state and stated that persons in such situations should be allowed to die seems to be terribly underweighted in the Court’s ruling. While M did not have a written advance directive, it is clear that the once-autonomous M had rationally assessed the benefits and burdens of living life with a permanent disorder of consciousness and, based on her life values and desires, determined that this is a life that she would not want to live. Thus, it seems correct to state that the Court did not respect her autonomy by ruling that artificial nutrition and hydration should not be withdrawn. Sheather concludes with an astute perception that the ‘criticism of the judgment of M might arise from a visceral sense that people would not like to be in a minimally conscious state’.3 While minimally conscious patients do have interests and can experience some balance between pain and enjoyment, a shift from being a fully autonomous person to a minimally conscious state is a considerable loss of
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‘self ’–a perception that M voiced prior to her disability. While it is true that fully autonomous individuals may not be able to fully appreciate the small pleasures that can be enjoyed in a minimally conscious or persistent vegetative state, this does not discount the beliefs and values held by once-autonomous individuals. Understandably, court decisions such as W v M are nuanced and must account for the perspectives and needs of numerous stakeholders. These situations are even more challenging when there is no written advance directive that can help guide decisions relating to therapeutic goals and lifesustaining technologies. Without an advance directive, a decision to respect precedent decisions of a once-autonomous person may contradict the well-being interests of this person once capacity has been lost. In the case of W v M, the court ruled in favour of prolonging life even though M had previously voiced her desire to not live in a persistent vegetative state and, according to caregivers and healthcare professionals, was living in a state of regular pain, was on the border between being minimally conscious and in a persistent vegetative state and had little to no likelihood of recovery. Thus, it seems that the Court placed a higher value on what may be a distorted or misunderstood sanctity of life principle than on M’s autonomy. What the court deliberations failed to address is the question of whether the prolonged application of life-sustaining technologies is ethically appropriate when application of the technology no longer serves to enhance the possibility of recovery but is merely delaying the natural dying process in situations of medical futility. The question becomes even more paramount when the patient cannot explicitly offer informed consent for the continuation of the futile treatments. While Sheather offers an insightful analysis of the Court’s ruling and the likely
impact of this decision on similar cases in the future, his paper fails to provide sufficient justification for the Court’s decision that, in the absence of written guidance, life should be prolonged at all costs. While life itself is a moral good, prolonging life for a person in regular pain with no hope of recovering to a more complete state of awareness simply because that person only verbalised her wishes about her treatment decisions seems to drastically undervalue the principle of autonomy. Correction notice This article has been corrected since it was published Online First. The institutional affiliation of the second author has been changed. Competing interests None. Provenance and peer review Not commissioned; externally peer reviewed.
To cite Hebron AL, McGee S. J Med Ethics 2014;40:714–716. Received 22 December 2013 Revised 12 January 2014 Accepted 3 February 2014 Published Online First 24 February 2014 J Med Ethics 2014;40:714–716. doi:10.1136/medethics-2013-102004
REFERENCES 1 2
3
4
5 6
W v. M. EWHC 2443 (Fam). 2011. Sheather JC. Withdrawing and withholding artificial nutrition and hydration from patients in a minimally conscious state: Re: M and its repercussions. J Med Ethics 2013;39:543–6. Sheather JC. Should we respect precedent autonomy in life-sustaining treatment decisions? J Med Ethics 2013;39:547–50. Schnakers C, Vanhaudenhuyse A, Giacino J, et al. Diagnostic accuracy of the vegetative and minimally conscious state: clinical consensus versus standardized neurobehavioral assessment. BMC Neurol 2009 Jul;9:35. Mental Capacity Act. 2005. S4(6). Lotto L, Manfrinati A, Rigoni D, et al. Attitudes towards end-of-life decisions and the subjective concepts of consciousness: an empirical analysis. PLoS ONE 2012;7:e31735.
Hebron AL, et al. J Med Ethics October 2014 Vol 40 No 10
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Precedent autonomy should be respected in life-sustaining treatment decisions Allison Leslie Hebron and Summer McGee J Med Ethics 2014 40: 714-716 originally published online February 24, 2014
doi: 10.1136/medethics-2013-102004 Updated information and services can be found at: http://jme.bmj.com/content/40/10/714
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Response
Precedent autonomy should be respected in life-sustaining treatment decisions Allison Leslie Hebron,1 Summer McGee2 ABSTRACT In the 2011 landmark case of W v M, the English Court of Protection ruled that it was unlawful to withdraw artificial nutrition and hydration from a woman who had been in a minimally conscious state for 8 years. From the perspective of the court, the absence of a written advance directive negated the woman’s previous, autonomous interests and, consequently, emphasis was given to her current welfare and well-being. While life itself is a moral good, prolonging life for a person in regular pain with no hope of recovering to a more complete state of awareness simply because that person only verbalized her wishes about her treatment decisions seems to drastically undervalue the principle of autonomy. We refute the notion that it is the role of the court to prolong life insofar as it can and argue that withholding and withdrawing life sustaining technologies from patients in a minimally conscious state can be ethically justified.
In the 2011 landmark case of W v M, the English Court of Protection ruled that it was unlawful to withdraw artificial nutrition and hydration from a woman (M) who had been in a minimally conscious state for 8 years.1 By relying on the sanctity of life principle, the Court’s ruling clearly favours the preservation of life in the absence of an advance directive regardless of a person’s previously, albeit verbally, expressed wishes. After a thorough analysis of the legal considerations and ethical issues influencing the Court’s decision, JC Sheather explores the question of whether the former desires of a once-autonomous individual should be respected in treatment decision-making once competency has been lost.2 3 Sheather’s assessment 1
Neiswanger Institute for Bioethics, Stritch School of Medicine, Loyola University Chicago, Maywood, Illinois, USA; 2Department of Public Management, College of Business, University of New Haven, West Haven, Connecticut, USA Correspondence to Allison Leslie Hebron, Neiswanger Institute for Bioethics, Stritch School of Medicine, Loyola University Chicago, 2160 South First Avenue, Maywood, IL 60153, USA; ahebron311@ gmail.com
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maintains the Court’s ruling that minimally conscious individuals retain some capacity to develop interests and gain pleasure from certain activities and, as such, previously verbalised wishes about treatment preferences that shorten their lives should not be upheld. We refute the notion that it is the role of the court to prolong life insofar as it can and argue that withholding and withdrawing life-sustaining technologies from patients in a minimally conscious state can be ethically justified.
BIOLOGICAL VERSUS PERSONAL DEATH Sheather begins with an overview of the differences between biological death and personal death. Thanks to medical advances such as mechanical ventilation, artificial hydration and nutrition, and even antibiotics, the ability to maintain and prolong life to a limited extent, in some circumstances, has become a reality. As a result, definitions of death have been refined to reflect the ability of a human body to remain viable in the absence of higher level cognitive thinking and awareness. In this regard, a minimally conscious state is defined ‘by the presence of inconsistent but reproducible goal-directed behaviors (e.g., response to command, verbalizations, visual pursuit, etc...)’.4 This condition can be contrasted to a persistent vegetative state which is characterised by a return of arousal without signs of awareness. Sheather aptly states that ‘the strong challenge presented by the question of precedent autonomy largely arises when the expressed interests of the former person conflict with the contemporaneous interests of the biological self which has to a greater or lesser extent outlived the person previously inhabiting it’.3 He goes on to explore the concept of identity and the ways in which our desires and interests can shift over time allowing new priorities to emerge. With regard to his example of a person with Alzheimer’s, it is understandable how a gradual decline of mental faculties can enable one’s interests and enjoyments to shift over time. Sheather asks ‘why should my former wishes, based upon values and desires I may no longer recognize, be determinative?’3
We would like to propose the opposite perspective on this question: Why should not my former wishes be determinative? While the Alzheimer’s example has merit, it does not parallel M’s situation; she did not slowly slide into a mental state that, while diminished, still allowed her basic skills such as speech, mobility, the ability to connect with loved ones and some capacity for planning and execution. Rather, she was immediately thrust into an existence that lacked all aspects of awareness and interaction with her environment except for a few basic motor skills such as tracking movement with her eyes. While there is no easy answer to either question, failure to address the second question weakens Sheather’s analysis of which interests ( prior wishes or current welfare issues) should take precedent when capacity is lost.
EXPERIENTIAL VERSUS CRITICAL INTERESTS Sheather goes on to explore Ronald Dworkin’s ideas about experiential interests versus critical interests. Simply stated, experiential interests are those interests we hold simply because the activity is pleasurable, such as hiking or cooking, while critical interests are those that give our life meaning and allow us to shape and connect our experiences in a personal way. Quality of life, including end-of-life care, is paramount to our critical interests. Sheather misses an opportunity to connect the link between autonomy and critical interests to M’s situation. For example, he quotes Dworkin: ‘Recognizing an individual right of autonomy makes self-creation possible. It allows for us to be responsible for shaping our lives to our own…distinctive personality’.3 In her current state, M lacks the capabilities that Dworkin associates with our ability to define who we are and find meaning in life. As such, M can no longer induce meaning and coherence from her existence. This is also true for patients in a persistent vegetative state—an existence that M said she would not want.
THE MENTAL CAPACITY ACT In order to fully appreciate the nuances and consequences of the ruling in W v M, it is important to understand the Mental Capacity Act (MCA) that governs treatment decision-making in England and Wales for adults who lack the mental capacity to make decisions on their own behalf. Under the MCA, decisions made on behalf of another person must be made in his or her ‘best interests’ which can include past and present desires, beliefs and values, as well as the views of
Hebron AL, et al. J Med Ethics October 2014 Vol 40 No 10
Downloaded from http://jme.bmj.com/ on March 7, 2015 - Published by group.bmj.com
Response any adults named by the individual or involved in caring for the person.5 In order to be taken into consideration, any desire or wish of an individual must be documented in writing. Importantly, the MCA does not fully support a ‘substituted judgment’ approach that would allow family members and caregivers to put themselves in the position of incapacitated individual and, based on their familiarity with the person, decide what he or she would have wanted. Rather, under a best interests approach, a person’s known (written) previous wishes are balanced against more objective factors regarding the welfare and well-being of the current, incapacitated person. While M lacked a written advance directive, family members stated that she had previously expressed her desire to not live like someone in a persistent vegetative state and voiced her opinion that someone in that state should be allowed to die. Counsel for M argued that her previously verbalised wishes should be the decisive factor in this case rather than the sanctity of life principle, which, according to Sheather, purports that every act or omission of action that causes death goes against the dignity of human life and is ethically unjustifiable.3 Counsel for M did consider the question of whether her current wishes and desires might be different from her wishes when she had capacity. However, they argue that her disability is so severe and her perceptions so minimal that, in her present state, she is incapable of sustained, autonomous thought. Consequently, her previous wishes should guide her treatment plan.1 When defining the sanctity of life principle, Sheather misses an opportunity to explore the fundamental differences between ‘cause’ and ‘allow’ with regard to death ensuing from the removal of lifesustaining technologies. Withdrawing artificial hydration and nutrition from a person in M’s condition does not cause death, but, rather, allows the natural disease progression to take place. In situations such as M’s, medical technology, at best, will slow or delay the dying process—a process that would have occurred more quickly in ages prior to the advent of current technology. In this regard, removing life-sustaining technologies from M would not violate the sanctity of life principle as Sheather defines it since the withdrawal of care would allow natural death to occur; it would not be the cause of her death. Consequently, the aforementioned application of the sanctity of life principle to M’s case seems to be arbitrary and lack a comprehensive understanding of the principle’s tenets. Hebron AL, et al. J Med Ethics October 2014 Vol 40 No 10
Best interests approach From the court’s perspective, the absence of a written advance directive negates her previous, autonomous interests and, consequently, emphasis should be given to her current welfare and well-being. In other words, by using a ‘best interests’, rather than a substituted judgment approach, the Court relied on the sanctity of life principle and ruled that prolonging life was in M’s (current) best interests. Sheather makes an interesting observation that ‘substituted judgment is more respectful of critical interests and it is difficult to imagine the judge in M reaching the same decision under such a regime’.3 In other words, if the Court had tried to determine the choice that M would have made had she not been incapacitated (instead of relying on what action would be in her best interest given her current state), it is likely that the Court would have ruled that it is lawful to remove artificial nutrition and hydration from a person in a minimally conscious state who is otherwise stable. However, the MCA states that a person’s past wishes and desires can be taken into account, but they will not be determinative. This seems to fly in the face of the principle of autonomy: by merely acknowledging a person’s past wishes rather than giving them significant weight, the MCA places emphasis on the sanctity of life principle over the principle of autonomy. Since the Court followed a ‘best interests’ perspective, the advantages of withdrawing artificial nutrition and hydration were compared with the advantages of continuing the treatment. While M had previously made comments that she would not like to live in a vegetative state, the Court noted that she did not have an advance directive and never voiced her opinion regarding life in a minimally conscious state. Again, Sheather misses an opportunity to link the Court’s assessment to Dworkin’s idea of critical interests. While being in a persistent vegetative state differs clinically from being in a minimally conscious state, the personal existence in these states can be comparable with regard to critical interests. For example, a patient in either state lacks critical thinking skills and no longer has the ability to find meaning and coherence in daily life. While the clinical characteristics of the two states are different, some may believe that both conditions have the same quality of life. Previous research has been conducted to increase our understanding of the varying attitudes towards patients in states of impaired consciousness. Interestingly,
while moral principles indicate the appropriateness of treatment withdrawal, the clinical characteristics of the different pathological states do not significantly impact decision-making.6 In other words, people do not rely on the clinical differences between a persistent vegetative state and a minimally conscious state to determine whether or not they would request the removal of life-sustaining technologies in these situations. Rather, they rely on their personal convictions and moral beliefs. This is an important insight that gives new meaning to M’s precedent desire to not exist like a person in a persistent vegetative state. It is important to consider these statements as expressions of closely-held values rather than delineations of clinical states of consciousness.
Determining bests interests When determining M’s best interests, the Court also took into account her continued suffering; testimony from M’s caregivers provides perspective that she is in a regular amount of pain and discomfort. One caregiver reported that M ‘had marked hypersensitivity and was experiencing a significant level of discomfort and, on occasions, pain. She confirmed that there was no realistic possibility of recovery and concluded that, in her opinion, it would be appropriate to withdraw artificial nutrition and hydration to allow M to die in dignity’.1 The sanctity of life principle does uphold the notion that there are occasions in which it would be within the best interest of the individual to remove lifesustaining technologies. Examples include situations in which the treatment is futile or cases where treatment caused the individual significant, frequent pain and discomfort. On the other hand, the sanctity of life principle will be upheld when there is ‘demonstrable evidence of some consciousness’. While M demonstrated an intermittent, yet minimal level of consciousness, several caregivers reported that she was in regular pain. Furthermore, the continuation of life-sustaining technologies would seem to be futile in M’s case. Given that she had been in a minimally conscious state for 8 years, one could argue that continuing to provide her with artificial nutrition and hydration would constitute a futile treatment as there is an unlikely chance of recovery. Notably, the Court seems to overlook a testimony from one of M’s caregivers regarding her diagnosis of being in a minimally conscious state. This individual reported, ‘M’s state was at the lowest level within that category, in effect on the border of the 715
Downloaded from http://jme.bmj.com/ on March 7, 2015 - Published by group.bmj.com
Response vegetative state’.1 Clearly, as with many clinical conditions, there is a continuum of diagnoses; there is not always a definitive line between the various disorders of consciousness. This fact seems to have been undervalued in Sheather’s analysis, as well as during the Court’s assessment of the balance between pleasures and pains in M’s existence.
SHOULD PRECEDENT AUTONOMY DECISIONS BE DETERMINATIVE? Sheather goes on to explore the quality of evidence that would be deemed sufficient proof to allow precedent autonomy decisions to be determinative and poses the question: ‘What quality of evidence, other than that provided by an advance decision, would constitute sufficient proof that the individual clearly wanted the decision to be respected?’3 The fact that M had referenced a specific situation in which a person was in a persistent vegetative state and stated that persons in such situations should be allowed to die seems to be terribly underweighted in the Court’s ruling. While M did not have a written advance directive, it is clear that the once-autonomous M had rationally assessed the benefits and burdens of living life with a permanent disorder of consciousness and, based on her life values and desires, determined that this is a life that she would not want to live. Thus, it seems correct to state that the Court did not respect her autonomy by ruling that artificial nutrition and hydration should not be withdrawn. Sheather concludes with an astute perception that the ‘criticism of the judgment of M might arise from a visceral sense that people would not like to be in a minimally conscious state’.3 While minimally conscious patients do have interests and can experience some balance between pain and enjoyment, a shift from being a fully autonomous person to a minimally conscious state is a considerable loss of
716
‘self ’–a perception that M voiced prior to her disability. While it is true that fully autonomous individuals may not be able to fully appreciate the small pleasures that can be enjoyed in a minimally conscious or persistent vegetative state, this does not discount the beliefs and values held by once-autonomous individuals. Understandably, court decisions such as W v M are nuanced and must account for the perspectives and needs of numerous stakeholders. These situations are even more challenging when there is no written advance directive that can help guide decisions relating to therapeutic goals and lifesustaining technologies. Without an advance directive, a decision to respect precedent decisions of a once-autonomous person may contradict the well-being interests of this person once capacity has been lost. In the case of W v M, the court ruled in favour of prolonging life even though M had previously voiced her desire to not live in a persistent vegetative state and, according to caregivers and healthcare professionals, was living in a state of regular pain, was on the border between being minimally conscious and in a persistent vegetative state and had little to no likelihood of recovery. Thus, it seems that the Court placed a higher value on what may be a distorted or misunderstood sanctity of life principle than on M’s autonomy. What the court deliberations failed to address is the question of whether the prolonged application of life-sustaining technologies is ethically appropriate when application of the technology no longer serves to enhance the possibility of recovery but is merely delaying the natural dying process in situations of medical futility. The question becomes even more paramount when the patient cannot explicitly offer informed consent for the continuation of the futile treatments. While Sheather offers an insightful analysis of the Court’s ruling and the likely
impact of this decision on similar cases in the future, his paper fails to provide sufficient justification for the Court’s decision that, in the absence of written guidance, life should be prolonged at all costs. While life itself is a moral good, prolonging life for a person in regular pain with no hope of recovering to a more complete state of awareness simply because that person only verbalised her wishes about her treatment decisions seems to drastically undervalue the principle of autonomy. Correction notice This article has been corrected since it was published Online First. The institutional affiliation of the second author has been changed. Competing interests None. Provenance and peer review Not commissioned; externally peer reviewed.
To cite Hebron AL, McGee S. J Med Ethics 2014;40:714–716. Received 22 December 2013 Revised 12 January 2014 Accepted 3 February 2014 Published Online First 24 February 2014 J Med Ethics 2014;40:714–716. doi:10.1136/medethics-2013-102004
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W v. M. EWHC 2443 (Fam). 2011. Sheather JC. Withdrawing and withholding artificial nutrition and hydration from patients in a minimally conscious state: Re: M and its repercussions. J Med Ethics 2013;39:543–6. Sheather JC. Should we respect precedent autonomy in life-sustaining treatment decisions? J Med Ethics 2013;39:547–50. Schnakers C, Vanhaudenhuyse A, Giacino J, et al. Diagnostic accuracy of the vegetative and minimally conscious state: clinical consensus versus standardized neurobehavioral assessment. BMC Neurol 2009 Jul;9:35. Mental Capacity Act. 2005. S4(6). Lotto L, Manfrinati A, Rigoni D, et al. Attitudes towards end-of-life decisions and the subjective concepts of consciousness: an empirical analysis. PLoS ONE 2012;7:e31735.
Hebron AL, et al. J Med Ethics October 2014 Vol 40 No 10
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Precedent autonomy should be respected in life-sustaining treatment decisions Allison Leslie Hebron and Summer McGee J Med Ethics 2014 40: 714-716 originally published online February 24, 2014
doi: 10.1136/medethics-2013-102004 Updated information and services can be found at: http://jme.bmj.com/content/40/10/714
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