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Case:
A 37-year-old woman presents with severe emaciation (body mass index, 9.4 kg/m2) because of chronic severe avoidant/restrictive food intake disorder. She had asked for parenteral nutrition (PN) for several years, whenever her providers pushed her to accept nutrition support, as she had experienced extreme distress because of presumed gastroparesis with enteral feeds or any time she tried to eat. All of her many physicians refused the request for PN on the basis that her intestine was believed to be functioning and her symptoms were functional, so they insisted on tube feeding. The medical team was angered by the request for PN, and very concerned that providing it would support her belief that she could not eat, which they likened to a delusion. They opined that refusal of appropriate therapy (enteral nutrition) did not constitute an indication for inappropriate therapy (PN). They also deemed her to have capacity, so her refusal of tube feeding was honored. She continued to deteriorate, and because of her inability to travel, along with financial and insurance-related issues, was unable to seek alternative care providers. The family provided access to highly credible external consultants, and begged that her providers initiate PN as a life-saving measure. Both were declined. She was taken by her family to the emergency department when she began to have difficulty ambulating and increasing confusion. In recognition of the severity of her starvation, she was to be admitted to the critical care unit. With minimal monitoring while awaiting transfer from the emergency department overnight, she developed severe hypoglycemia and sustained cardiac arrest. Although spontaneous circulation was resumed, she sustained anoxic brain injury, and died after removal of life-sustaining treatment.
Ethical considerations
This case illustrates how the practice of caring for certain patients may come with deep unconscious determinants and conflicts of expectation – the duty to treat can be unclear in cases of refractory eating disorders. Multiple clinical teams were angry at the patient and her family for requesting PN and refused external input.
Although other eating disorders have received more attention, there is little research specific to avoidant/restrictive food intake disorder. There is some consensus that someone at a very low weight because of anorexia nervosa cannot, by definition, have decisional capacity with regard to feeding. Certainly, reviews cite cognitive dysfunction as a common finding, far worse during starvation, in patients with anorexia nervosa,1,2 and nourishment over objection has been advised.3 Further, it is known that gastric dysfunction occurs with some frequency in the presence of starvation in patients with eating disorders.4 Moreover, the potential risks of PN should be contextualized and compared with the certainty of death in someone this starved. Finally, if the patient’s refusal to eat or be tube fed were a delusion, which is by definition “fixed,” refusing to provide PN, and allowing further starvation, would not be expected to have benefit in resolution of the delusion.
Issues related to nourishment can be highly emotive – from “starving to death” on the one hand and “force feeding” on the other. Delivery of adequate nutrition and hydration is considered a basic human right, and must be offered as part of basic care. At the same time, we have observed that the request for nutrition support creates severe moral distress and anger among clinicians treating patients with eating disorders or with fatal illness. Does a delusion preclude feeding, even if by less than ideal means? How should a physician react to feeding treatments they deem excessive or unnecessary? Does a treating team have a duty to consider input from specialists with expertise specific to the patient when such conflict occurs between the patient/family and the treating team? Speculation exists that onset of anorexia nervosa may be linked to a postinfectious condition – a post–viral disease brain reprogramming.5,6 Would an organic explanation change our attitude toward patients with eating disorders?
Medicine’s emotive harms
Clinicians hold more negative attitudes toward certain patients – our implicit bias. It has been suggested that nice patients may be preferred by clinicians and therefore receive more humanistic care.7 Clinicians hold more negative attitudes toward patients with eating disorders than toward other patients. Cases of starvation caused by eating disorders are often seen by clinicians as a form of deviance, which provokes a visceral reaction of anger and frustration. These reactions have been associated with patients’ lack of improvement and personality pathology and with clinicians’ stigmatizing beliefs and inexperience.8 One could argue that this type of unconscious partiality may be worse than intentional harm.
Families and patients often request a treatment as a way to exert their agency. We clinicians may experience ethical dissonance as a result, whether because of ego or because the desired treatment is less favorable (for example, parenteral vs. enteral nutrition). Should maintaining clinical obstinance overrule patient and family autonomy, particularly in the face of the availability of life-saving intervention, even if less desirable than other standard treatments?
Should the physicians have better considered the relative risk of PN? What is the true potential harm? Would it benefit the patient or family? While PN’s benefit is usually life prolongation, it is not without risk of infection, potential mucosal atrophy of the unused gut, hepatic dysfunction, high cost, and an increased complexity of care. However, the incidence of blood stream infections in hospitalized patients receiving PN is only 1 episode for every 100 patient-days of treatment.9 On the other hand, weight regain is a significant determinant of success for treating eating disorders.10 Does the small risk of line-related sepsis, unlikely to be fatal, outweigh the certainty of death from starvation? What is the source of providers’ anger toward such patients? Even when providers feel any hope of improved outcome to be unreasonable, does refusal to provide nourishment, even if less than ideally, improve the likelihood the family will “come to grips” with the situation? Is there an obligation to consider our contribution to the emotional harm to the family because of our refusal, especially if coupled with anger?
Duty of life-saving care
Treating a competent patient without consent is unlawful. Autonomy is the dominant ethical principle, and a mentally competent person has the right to refuse consent to medical treatment for any reason, even when that decision may lead to death. Authors urge that patient lives should not be intentionally shortened, including the withholding of life-prolonging medical treatments or interventions.11,12 Although starvation can compromise capacity, whether patients with severe starvation have truly lost their mental competence and right to self-determination is debated.13 Do physicians have a duty to provide nutrition support by whatever route a patient will accept as a life-saving measure or at least until nutritional stability and improved mental status can be attained?
Next steps
Despite potential concerns clinicians may have over the risks and disadvantages of PN, reeducation of clinician emotional responses toward providing it is needed. As illustrated by this case study, there are likely situations, not fitting the norm, when PN is warranted as a life-saving measure. An awareness of implicit bias we may experience is paramount in all situations. Case-by-case multidisciplinary evaluations are warranted based on guidelines from professional organizations,14 alongside core ethical principles, when considering nutrition support.
References
1. Guillaume S et al. Psychol Med. 2015 Dec;45(16):3377-91.
2. Katzman DK et al. Semin Clin Neuropsychiatry. 2001 Apr;6(2):146-52.
3. Elzakkers IF et al. Int J Eat Disord. 2014 Dec;47(8):845-52.
4. Robinson PH et al. Gut. 1988 Apr;29(4):458-64.
5. Breithaupt L et al. JAMA Psychiatry. 2019 Apr 24;76(8):800-9.
6. Sokol MS. J Child Adolesc Psychopharmacol. 2000;10(2):133-45.
7. Detsky AS, Baerlocher MO. JAMA. 2011 Jul;306(1):94-5.
8. Thompson-Brenner H et al. Psychiatr Serv. 2012 Jan;63(1):73-8.
9. Fonseca G et al. JPEN J Parenter Enteral Nutr. 2018 Jan;42(1):171-5.
10. National Collaborating Centre for Mental Health. In: Eating disorders: Core interventions in the treatment and management of anorexia nervosa, bulimia nervosa and related eating disorders. Leicester, United Kingdom: British Psychological Society, 2004.
11. Keown J. Leg Stud. 2000 Mar;20(1):66-84.
12. Sayers GM et al. Postgrad Med J. 2006 Feb;82(964):79-83.
13. Miller I. BioSocieties. 2017;12:89-108.
14. A.S.P.E.N. Ethics Position Paper Task Force; Barrocas A et al. Nutr Clin Pract. 2010 Dec;25(6):672-9.
Dr. Anderson (@dochitect) is a clinical fellow in geriatric medicine at the University of California, San Francisco; Dr. Seres (@davidseres1) is an associate professor of medicine in the Institute of Human Nutrition, director of medical nutrition, and associate clinical ethicist at Columbia University Irving Medical Center, New York. They have no funding sources to declare and no conflicts of interest.
Case:
A 37-year-old woman presents with severe emaciation (body mass index, 9.4 kg/m2) because of chronic severe avoidant/restrictive food intake disorder. She had asked for parenteral nutrition (PN) for several years, whenever her providers pushed her to accept nutrition support, as she had experienced extreme distress because of presumed gastroparesis with enteral feeds or any time she tried to eat. All of her many physicians refused the request for PN on the basis that her intestine was believed to be functioning and her symptoms were functional, so they insisted on tube feeding. The medical team was angered by the request for PN, and very concerned that providing it would support her belief that she could not eat, which they likened to a delusion. They opined that refusal of appropriate therapy (enteral nutrition) did not constitute an indication for inappropriate therapy (PN). They also deemed her to have capacity, so her refusal of tube feeding was honored. She continued to deteriorate, and because of her inability to travel, along with financial and insurance-related issues, was unable to seek alternative care providers. The family provided access to highly credible external consultants, and begged that her providers initiate PN as a life-saving measure. Both were declined. She was taken by her family to the emergency department when she began to have difficulty ambulating and increasing confusion. In recognition of the severity of her starvation, she was to be admitted to the critical care unit. With minimal monitoring while awaiting transfer from the emergency department overnight, she developed severe hypoglycemia and sustained cardiac arrest. Although spontaneous circulation was resumed, she sustained anoxic brain injury, and died after removal of life-sustaining treatment.
Ethical considerations
This case illustrates how the practice of caring for certain patients may come with deep unconscious determinants and conflicts of expectation – the duty to treat can be unclear in cases of refractory eating disorders. Multiple clinical teams were angry at the patient and her family for requesting PN and refused external input.
Although other eating disorders have received more attention, there is little research specific to avoidant/restrictive food intake disorder. There is some consensus that someone at a very low weight because of anorexia nervosa cannot, by definition, have decisional capacity with regard to feeding. Certainly, reviews cite cognitive dysfunction as a common finding, far worse during starvation, in patients with anorexia nervosa,1,2 and nourishment over objection has been advised.3 Further, it is known that gastric dysfunction occurs with some frequency in the presence of starvation in patients with eating disorders.4 Moreover, the potential risks of PN should be contextualized and compared with the certainty of death in someone this starved. Finally, if the patient’s refusal to eat or be tube fed were a delusion, which is by definition “fixed,” refusing to provide PN, and allowing further starvation, would not be expected to have benefit in resolution of the delusion.
Issues related to nourishment can be highly emotive – from “starving to death” on the one hand and “force feeding” on the other. Delivery of adequate nutrition and hydration is considered a basic human right, and must be offered as part of basic care. At the same time, we have observed that the request for nutrition support creates severe moral distress and anger among clinicians treating patients with eating disorders or with fatal illness. Does a delusion preclude feeding, even if by less than ideal means? How should a physician react to feeding treatments they deem excessive or unnecessary? Does a treating team have a duty to consider input from specialists with expertise specific to the patient when such conflict occurs between the patient/family and the treating team? Speculation exists that onset of anorexia nervosa may be linked to a postinfectious condition – a post–viral disease brain reprogramming.5,6 Would an organic explanation change our attitude toward patients with eating disorders?
Medicine’s emotive harms
Clinicians hold more negative attitudes toward certain patients – our implicit bias. It has been suggested that nice patients may be preferred by clinicians and therefore receive more humanistic care.7 Clinicians hold more negative attitudes toward patients with eating disorders than toward other patients. Cases of starvation caused by eating disorders are often seen by clinicians as a form of deviance, which provokes a visceral reaction of anger and frustration. These reactions have been associated with patients’ lack of improvement and personality pathology and with clinicians’ stigmatizing beliefs and inexperience.8 One could argue that this type of unconscious partiality may be worse than intentional harm.
Families and patients often request a treatment as a way to exert their agency. We clinicians may experience ethical dissonance as a result, whether because of ego or because the desired treatment is less favorable (for example, parenteral vs. enteral nutrition). Should maintaining clinical obstinance overrule patient and family autonomy, particularly in the face of the availability of life-saving intervention, even if less desirable than other standard treatments?
Should the physicians have better considered the relative risk of PN? What is the true potential harm? Would it benefit the patient or family? While PN’s benefit is usually life prolongation, it is not without risk of infection, potential mucosal atrophy of the unused gut, hepatic dysfunction, high cost, and an increased complexity of care. However, the incidence of blood stream infections in hospitalized patients receiving PN is only 1 episode for every 100 patient-days of treatment.9 On the other hand, weight regain is a significant determinant of success for treating eating disorders.10 Does the small risk of line-related sepsis, unlikely to be fatal, outweigh the certainty of death from starvation? What is the source of providers’ anger toward such patients? Even when providers feel any hope of improved outcome to be unreasonable, does refusal to provide nourishment, even if less than ideally, improve the likelihood the family will “come to grips” with the situation? Is there an obligation to consider our contribution to the emotional harm to the family because of our refusal, especially if coupled with anger?
Duty of life-saving care
Treating a competent patient without consent is unlawful. Autonomy is the dominant ethical principle, and a mentally competent person has the right to refuse consent to medical treatment for any reason, even when that decision may lead to death. Authors urge that patient lives should not be intentionally shortened, including the withholding of life-prolonging medical treatments or interventions.11,12 Although starvation can compromise capacity, whether patients with severe starvation have truly lost their mental competence and right to self-determination is debated.13 Do physicians have a duty to provide nutrition support by whatever route a patient will accept as a life-saving measure or at least until nutritional stability and improved mental status can be attained?
Next steps
Despite potential concerns clinicians may have over the risks and disadvantages of PN, reeducation of clinician emotional responses toward providing it is needed. As illustrated by this case study, there are likely situations, not fitting the norm, when PN is warranted as a life-saving measure. An awareness of implicit bias we may experience is paramount in all situations. Case-by-case multidisciplinary evaluations are warranted based on guidelines from professional organizations,14 alongside core ethical principles, when considering nutrition support.
References
1. Guillaume S et al. Psychol Med. 2015 Dec;45(16):3377-91.
2. Katzman DK et al. Semin Clin Neuropsychiatry. 2001 Apr;6(2):146-52.
3. Elzakkers IF et al. Int J Eat Disord. 2014 Dec;47(8):845-52.
4. Robinson PH et al. Gut. 1988 Apr;29(4):458-64.
5. Breithaupt L et al. JAMA Psychiatry. 2019 Apr 24;76(8):800-9.
6. Sokol MS. J Child Adolesc Psychopharmacol. 2000;10(2):133-45.
7. Detsky AS, Baerlocher MO. JAMA. 2011 Jul;306(1):94-5.
8. Thompson-Brenner H et al. Psychiatr Serv. 2012 Jan;63(1):73-8.
9. Fonseca G et al. JPEN J Parenter Enteral Nutr. 2018 Jan;42(1):171-5.
10. National Collaborating Centre for Mental Health. In: Eating disorders: Core interventions in the treatment and management of anorexia nervosa, bulimia nervosa and related eating disorders. Leicester, United Kingdom: British Psychological Society, 2004.
11. Keown J. Leg Stud. 2000 Mar;20(1):66-84.
12. Sayers GM et al. Postgrad Med J. 2006 Feb;82(964):79-83.
13. Miller I. BioSocieties. 2017;12:89-108.
14. A.S.P.E.N. Ethics Position Paper Task Force; Barrocas A et al. Nutr Clin Pract. 2010 Dec;25(6):672-9.
Dr. Anderson (@dochitect) is a clinical fellow in geriatric medicine at the University of California, San Francisco; Dr. Seres (@davidseres1) is an associate professor of medicine in the Institute of Human Nutrition, director of medical nutrition, and associate clinical ethicist at Columbia University Irving Medical Center, New York. They have no funding sources to declare and no conflicts of interest.
Case:
A 37-year-old woman presents with severe emaciation (body mass index, 9.4 kg/m2) because of chronic severe avoidant/restrictive food intake disorder. She had asked for parenteral nutrition (PN) for several years, whenever her providers pushed her to accept nutrition support, as she had experienced extreme distress because of presumed gastroparesis with enteral feeds or any time she tried to eat. All of her many physicians refused the request for PN on the basis that her intestine was believed to be functioning and her symptoms were functional, so they insisted on tube feeding. The medical team was angered by the request for PN, and very concerned that providing it would support her belief that she could not eat, which they likened to a delusion. They opined that refusal of appropriate therapy (enteral nutrition) did not constitute an indication for inappropriate therapy (PN). They also deemed her to have capacity, so her refusal of tube feeding was honored. She continued to deteriorate, and because of her inability to travel, along with financial and insurance-related issues, was unable to seek alternative care providers. The family provided access to highly credible external consultants, and begged that her providers initiate PN as a life-saving measure. Both were declined. She was taken by her family to the emergency department when she began to have difficulty ambulating and increasing confusion. In recognition of the severity of her starvation, she was to be admitted to the critical care unit. With minimal monitoring while awaiting transfer from the emergency department overnight, she developed severe hypoglycemia and sustained cardiac arrest. Although spontaneous circulation was resumed, she sustained anoxic brain injury, and died after removal of life-sustaining treatment.
Ethical considerations
This case illustrates how the practice of caring for certain patients may come with deep unconscious determinants and conflicts of expectation – the duty to treat can be unclear in cases of refractory eating disorders. Multiple clinical teams were angry at the patient and her family for requesting PN and refused external input.
Although other eating disorders have received more attention, there is little research specific to avoidant/restrictive food intake disorder. There is some consensus that someone at a very low weight because of anorexia nervosa cannot, by definition, have decisional capacity with regard to feeding. Certainly, reviews cite cognitive dysfunction as a common finding, far worse during starvation, in patients with anorexia nervosa,1,2 and nourishment over objection has been advised.3 Further, it is known that gastric dysfunction occurs with some frequency in the presence of starvation in patients with eating disorders.4 Moreover, the potential risks of PN should be contextualized and compared with the certainty of death in someone this starved. Finally, if the patient’s refusal to eat or be tube fed were a delusion, which is by definition “fixed,” refusing to provide PN, and allowing further starvation, would not be expected to have benefit in resolution of the delusion.
Issues related to nourishment can be highly emotive – from “starving to death” on the one hand and “force feeding” on the other. Delivery of adequate nutrition and hydration is considered a basic human right, and must be offered as part of basic care. At the same time, we have observed that the request for nutrition support creates severe moral distress and anger among clinicians treating patients with eating disorders or with fatal illness. Does a delusion preclude feeding, even if by less than ideal means? How should a physician react to feeding treatments they deem excessive or unnecessary? Does a treating team have a duty to consider input from specialists with expertise specific to the patient when such conflict occurs between the patient/family and the treating team? Speculation exists that onset of anorexia nervosa may be linked to a postinfectious condition – a post–viral disease brain reprogramming.5,6 Would an organic explanation change our attitude toward patients with eating disorders?
Medicine’s emotive harms
Clinicians hold more negative attitudes toward certain patients – our implicit bias. It has been suggested that nice patients may be preferred by clinicians and therefore receive more humanistic care.7 Clinicians hold more negative attitudes toward patients with eating disorders than toward other patients. Cases of starvation caused by eating disorders are often seen by clinicians as a form of deviance, which provokes a visceral reaction of anger and frustration. These reactions have been associated with patients’ lack of improvement and personality pathology and with clinicians’ stigmatizing beliefs and inexperience.8 One could argue that this type of unconscious partiality may be worse than intentional harm.
Families and patients often request a treatment as a way to exert their agency. We clinicians may experience ethical dissonance as a result, whether because of ego or because the desired treatment is less favorable (for example, parenteral vs. enteral nutrition). Should maintaining clinical obstinance overrule patient and family autonomy, particularly in the face of the availability of life-saving intervention, even if less desirable than other standard treatments?
Should the physicians have better considered the relative risk of PN? What is the true potential harm? Would it benefit the patient or family? While PN’s benefit is usually life prolongation, it is not without risk of infection, potential mucosal atrophy of the unused gut, hepatic dysfunction, high cost, and an increased complexity of care. However, the incidence of blood stream infections in hospitalized patients receiving PN is only 1 episode for every 100 patient-days of treatment.9 On the other hand, weight regain is a significant determinant of success for treating eating disorders.10 Does the small risk of line-related sepsis, unlikely to be fatal, outweigh the certainty of death from starvation? What is the source of providers’ anger toward such patients? Even when providers feel any hope of improved outcome to be unreasonable, does refusal to provide nourishment, even if less than ideally, improve the likelihood the family will “come to grips” with the situation? Is there an obligation to consider our contribution to the emotional harm to the family because of our refusal, especially if coupled with anger?
Duty of life-saving care
Treating a competent patient without consent is unlawful. Autonomy is the dominant ethical principle, and a mentally competent person has the right to refuse consent to medical treatment for any reason, even when that decision may lead to death. Authors urge that patient lives should not be intentionally shortened, including the withholding of life-prolonging medical treatments or interventions.11,12 Although starvation can compromise capacity, whether patients with severe starvation have truly lost their mental competence and right to self-determination is debated.13 Do physicians have a duty to provide nutrition support by whatever route a patient will accept as a life-saving measure or at least until nutritional stability and improved mental status can be attained?
Next steps
Despite potential concerns clinicians may have over the risks and disadvantages of PN, reeducation of clinician emotional responses toward providing it is needed. As illustrated by this case study, there are likely situations, not fitting the norm, when PN is warranted as a life-saving measure. An awareness of implicit bias we may experience is paramount in all situations. Case-by-case multidisciplinary evaluations are warranted based on guidelines from professional organizations,14 alongside core ethical principles, when considering nutrition support.
References
1. Guillaume S et al. Psychol Med. 2015 Dec;45(16):3377-91.
2. Katzman DK et al. Semin Clin Neuropsychiatry. 2001 Apr;6(2):146-52.
3. Elzakkers IF et al. Int J Eat Disord. 2014 Dec;47(8):845-52.
4. Robinson PH et al. Gut. 1988 Apr;29(4):458-64.
5. Breithaupt L et al. JAMA Psychiatry. 2019 Apr 24;76(8):800-9.
6. Sokol MS. J Child Adolesc Psychopharmacol. 2000;10(2):133-45.
7. Detsky AS, Baerlocher MO. JAMA. 2011 Jul;306(1):94-5.
8. Thompson-Brenner H et al. Psychiatr Serv. 2012 Jan;63(1):73-8.
9. Fonseca G et al. JPEN J Parenter Enteral Nutr. 2018 Jan;42(1):171-5.
10. National Collaborating Centre for Mental Health. In: Eating disorders: Core interventions in the treatment and management of anorexia nervosa, bulimia nervosa and related eating disorders. Leicester, United Kingdom: British Psychological Society, 2004.
11. Keown J. Leg Stud. 2000 Mar;20(1):66-84.
12. Sayers GM et al. Postgrad Med J. 2006 Feb;82(964):79-83.
13. Miller I. BioSocieties. 2017;12:89-108.
14. A.S.P.E.N. Ethics Position Paper Task Force; Barrocas A et al. Nutr Clin Pract. 2010 Dec;25(6):672-9.
Dr. Anderson (@dochitect) is a clinical fellow in geriatric medicine at the University of California, San Francisco; Dr. Seres (@davidseres1) is an associate professor of medicine in the Institute of Human Nutrition, director of medical nutrition, and associate clinical ethicist at Columbia University Irving Medical Center, New York. They have no funding sources to declare and no conflicts of interest.
