Ethics

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.

Case

A 45-year-old male was admitted to the hospital with severe alcoholic hepatitis. After several days of supportive care and medical therapy, the patient continued to show clinical decline. The patient is now admitted to the intensive-care unit with a Maddrey’s Discriminant Function score of 45 and a Model for End-Stage Liver Disease score of 38. He has no other significant medical comorbidities. On rounds, the patient’s wife, who is at the bedside, asks the team whether her husband would be a candidate for liver transplantation.

Should this patient be offered liver transplantation? What medical and psychosocial factors should we consider? What ethical principles should we consider?

Medical considerations

With the advent of direct-acting antivirals (DAAs), there has been a decline in the number of liver transplants performed for hepatitis C virus–related cirrhosis.¹ Instead, alcohol-related liver disease (ALD) has become the most common indication for liver transplant in the United States.² The 6-month abstinence requirement was a widespread practice within the transplant community that would exclude any patients who were actively drinking from being considered for liver transplant. However, data are inconclusive whether the 6-month rule serves as a predictor of future drinking or poor outcomes after liver transplant.^3,4 Unfortunately, many patients with severe alcoholic hepatitis will not survive long enough to fulfill the 6-month requirement.⁵

In 2011, Mathurin and colleagues led the pivotal European trial demonstrating the effectiveness of liver transplant as a rescue option for highly selected patients with severe alcoholic hepatitis.⁵ The selection criteria included patients with severe alcoholic hepatitis unresponsive to medical therapy, first liver-decompensating event, presence of close supportive family members, absence of severe psychiatric disorders, and agreement by patients to adhere to lifelong total alcohol abstinence. The study showed that the 6-month survival rate of patients who received early liver transplant was 77%, compared with 25% among those who did not. The positive outcomes were subsequently replicated at several centers in the United States, and this led to a wider adoption of early liver transplant for severe alcoholic hepatitis.^6-8

Psychosocial considerations

At present, we do not have well-validated consensus selection criteria to identify patients with alcoholic hepatitis most suitable for liver transplant. Each transplant center employs its own set of selection criteria with slight variations from the original European trial which prompted a national expert consensus meeting in Dallas in 2019.⁹ The consortium published a set of guidelines for centers planning to or already performing alcoholic hepatitis transplants. The proposed criteria to determine liver transplant candidacy are the following: 1) patients presenting for the first time with decompensated liver disease who are nonresponders to medical therapy; 2) assessment by a multidisciplinary psychosocial team including a social worker and an additional specialist; 3) no repeated unsuccessful attempts at addiction rehabilitation; 4) lack of other substance use/dependence; 5) insight with a commitment to sobriety; 6) presence of close supportive family members. The goal was to select candidates with the least likelihood of relapse in the hope of preventing poor outcomes after liver transplant. A study by a Johns Hopkins group comparing patients with severe alcoholic hepatitis who underwent careful psychosocial evaluation versus alcoholic cirrhosis with at least 6 months abstinence found that the survival and alcohol relapse rates were similar between the two groups.⁷

Ethical considerations

Expanding liver transplant indications to include some patients with severe alcoholic hepatitis will uphold the principle of beneficence given clear evidence of a survival benefit. In addition, graft survival rates were comparable with those of patients who underwent liver transplant for other causes.¹⁰ However, in an era of persistent organ shortage, it is important to balance justice or fairness to the patient with utilitarian policies that optimize outcomes for all who are in need of liver transplantation.

Justice

Justice means fair and equal distribution of scarce health resources to patients without bias on account of sex, race, wealth, and the nature of a patient’s disease. Based on the principle of justice, a patient with alcoholic hepatitis should be afforded opportunities for liver transplant equal to patients with other etiologies of liver disease.

Opponents of adoption of liver transplant for alcoholic hepatitis often base their reluctance on the following: patients’ failure to gain control of their alcohol use disorder, fears of alcohol relapse, and ultimately perceptions that these patients may be less deserving, compared with patients with other etiologies of liver disease. But, is this fair to the patient?

Alcohol use disorder, in general, is stigmatized and is considered by some to be a self-inflicted condition. As a medical community, we do not withhold life-saving treatment from patients who had inflicted their own injuries. Nevertheless, the stigma against alcoholism is so entrenched in our society that some fear transplanting a patient who is actively drinking would negatively affect the public’s perception of the transplant community and thus diminish the organ donation rate and harm the common good. Interestingly, a public opinion survey actually showed that the majority of respondents were at least neutral about the idea of transplanting patients with alcoholic hepatitis.¹¹

Utility

Utility means achieving the greatest good for the greatest number of patients. The absolute scarcity of available organs imposes a need for a strict allocation decision. A liver that is used for a patient with severe alcoholic hepatitis is an organ not used for another patient suffering chronic liver disease. It is worth noting that about 20% of patients with severe alcoholic hepatitis might recover without a transplant.⁵ That means about one out of five liver transplants performed for alcoholic hepatitis may have been done in a patient who would have recovered without a transplant. Does this policy optimize the greatest good for everyone who is on the wait list?

Moss and Siegler argued that it was not the alcoholism that made patients with alcoholic liver disease less deserving of liver transplant, but rather their failure to seek treatment for alcoholism that made their claim for liver transplant weaker, compared with those who developed cirrhosis through no fault of their own.¹² This argument is problematic. For example, patients with nonalcoholic steatohepatitis (NASH) are often compared with patients with alcoholic liver disease when it comes to modifiable behaviors that affect their health, whether it is through weight loss or abstinence, respectively. Yet, there is very little argument for lower priority for NASH patients who failed to lose weight. Secondly, alcohol use disorder is a psychosocially complex disease that requires a multidisciplinary treatment approach. Substance abuse rehabilitation is not readily available to most patients and could single out vulnerable patients from lower socioeconomic classes who are at higher risk for developing alcohol use disorder. Imposing a strict abstinence period regardless of a patient’s medical need is punitive and does not treat the underlying disease. Instead of focusing on disease causality, we ought to advocate for medical treatment of the underlying disease.

Conclusions

Liver transplant effectively functions as a zero-sum game. Efforts to save individual patients with severe alcoholic hepatitis can result in trade-offs to other patients on the wait list. Balancing the ethical principles of utility and justice is challenging. A strict 6-month rule, while convenient, does not strike the balance. The decision to transplant a patient with alcoholic hepatitis should be made on a case-by-case basis. As stewards of donor organs, transplant centers have a duty to carefully evaluate a potential candidate based on medical needs and recipient outcome without the influence of bias. We feel that, when considering liver transplant in patients with severe alcoholic hepatitis, the principle of justice or fairness to the patient is the overriding ethical principle. Provided the patient meets medical and psychosocial criteria that available evidence suggests would result in long-term survival post transplantation, we would support listing for liver transplantation.

References

1. Goldberg D et al. Gastroenterology, 2017;152(5):1090-9.e1.

2. Cholankeril G, Ahmed A. Clin Gastroenterol Hepatol. 2018;16(8):1356-8.

3. Neuberger J et al. J Hepatol. 2002;36(1):130-7.

4. DiMartini A, et al. Clin Liver Dis. 2011;15(4):727-51.

5. Mathurin P et al. N Engl J Med, 2011;365(19):1790-800.

6. Im GY et al. Am J Transplant. 2016;16(3):841-9.

7. Lee BP et al. Ann Surg. 2017;265(1):20-9.

8. Lee BP et al. Gastroenterology. 2018. 155(2):422-30.e1.

9. Asrani SK et al. Liver Transpl. 2020;26(1):127-40.

10. Singal AK et al. Transplantation. 2013;95(5):755-60.

11. Stroh G et al. Am J Transplant. 2015;15(6):1598-604.

12. Moss AH, Siegler M. JAMA. 1991;265(10):1295-8.

Dr. Wang is a gastroenterology fellow in the division of gastroenterology, hepatology, and nutrition, department of internal medicine, University of Chicago Medicine; Dr. Aronsohn is associate professor in the division of gastroenterology, hepatology, and nutrition, department of internal medicine, University of Chicago Medicine.

Case

A 45-year-old male was admitted to the hospital with severe alcoholic hepatitis. After several days of supportive care and medical therapy, the patient continued to show clinical decline. The patient is now admitted to the intensive-care unit with a Maddrey’s Discriminant Function score of 45 and a Model for End-Stage Liver Disease score of 38. He has no other significant medical comorbidities. On rounds, the patient’s wife, who is at the bedside, asks the team whether her husband would be a candidate for liver transplantation.

Should this patient be offered liver transplantation? What medical and psychosocial factors should we consider? What ethical principles should we consider?

Medical considerations

With the advent of direct-acting antivirals (DAAs), there has been a decline in the number of liver transplants performed for hepatitis C virus–related cirrhosis.¹ Instead, alcohol-related liver disease (ALD) has become the most common indication for liver transplant in the United States.² The 6-month abstinence requirement was a widespread practice within the transplant community that would exclude any patients who were actively drinking from being considered for liver transplant. However, data are inconclusive whether the 6-month rule serves as a predictor of future drinking or poor outcomes after liver transplant.^3,4 Unfortunately, many patients with severe alcoholic hepatitis will not survive long enough to fulfill the 6-month requirement.⁵

In 2011, Mathurin and colleagues led the pivotal European trial demonstrating the effectiveness of liver transplant as a rescue option for highly selected patients with severe alcoholic hepatitis.⁵ The selection criteria included patients with severe alcoholic hepatitis unresponsive to medical therapy, first liver-decompensating event, presence of close supportive family members, absence of severe psychiatric disorders, and agreement by patients to adhere to lifelong total alcohol abstinence. The study showed that the 6-month survival rate of patients who received early liver transplant was 77%, compared with 25% among those who did not. The positive outcomes were subsequently replicated at several centers in the United States, and this led to a wider adoption of early liver transplant for severe alcoholic hepatitis.^6-8

Psychosocial considerations

At present, we do not have well-validated consensus selection criteria to identify patients with alcoholic hepatitis most suitable for liver transplant. Each transplant center employs its own set of selection criteria with slight variations from the original European trial which prompted a national expert consensus meeting in Dallas in 2019.⁹ The consortium published a set of guidelines for centers planning to or already performing alcoholic hepatitis transplants. The proposed criteria to determine liver transplant candidacy are the following: 1) patients presenting for the first time with decompensated liver disease who are nonresponders to medical therapy; 2) assessment by a multidisciplinary psychosocial team including a social worker and an additional specialist; 3) no repeated unsuccessful attempts at addiction rehabilitation; 4) lack of other substance use/dependence; 5) insight with a commitment to sobriety; 6) presence of close supportive family members. The goal was to select candidates with the least likelihood of relapse in the hope of preventing poor outcomes after liver transplant. A study by a Johns Hopkins group comparing patients with severe alcoholic hepatitis who underwent careful psychosocial evaluation versus alcoholic cirrhosis with at least 6 months abstinence found that the survival and alcohol relapse rates were similar between the two groups.⁷

Ethical considerations

Expanding liver transplant indications to include some patients with severe alcoholic hepatitis will uphold the principle of beneficence given clear evidence of a survival benefit. In addition, graft survival rates were comparable with those of patients who underwent liver transplant for other causes.¹⁰ However, in an era of persistent organ shortage, it is important to balance justice or fairness to the patient with utilitarian policies that optimize outcomes for all who are in need of liver transplantation.

Justice

Justice means fair and equal distribution of scarce health resources to patients without bias on account of sex, race, wealth, and the nature of a patient’s disease. Based on the principle of justice, a patient with alcoholic hepatitis should be afforded opportunities for liver transplant equal to patients with other etiologies of liver disease.

Opponents of adoption of liver transplant for alcoholic hepatitis often base their reluctance on the following: patients’ failure to gain control of their alcohol use disorder, fears of alcohol relapse, and ultimately perceptions that these patients may be less deserving, compared with patients with other etiologies of liver disease. But, is this fair to the patient?

Alcohol use disorder, in general, is stigmatized and is considered by some to be a self-inflicted condition. As a medical community, we do not withhold life-saving treatment from patients who had inflicted their own injuries. Nevertheless, the stigma against alcoholism is so entrenched in our society that some fear transplanting a patient who is actively drinking would negatively affect the public’s perception of the transplant community and thus diminish the organ donation rate and harm the common good. Interestingly, a public opinion survey actually showed that the majority of respondents were at least neutral about the idea of transplanting patients with alcoholic hepatitis.¹¹

Utility

Utility means achieving the greatest good for the greatest number of patients. The absolute scarcity of available organs imposes a need for a strict allocation decision. A liver that is used for a patient with severe alcoholic hepatitis is an organ not used for another patient suffering chronic liver disease. It is worth noting that about 20% of patients with severe alcoholic hepatitis might recover without a transplant.⁵ That means about one out of five liver transplants performed for alcoholic hepatitis may have been done in a patient who would have recovered without a transplant. Does this policy optimize the greatest good for everyone who is on the wait list?

Moss and Siegler argued that it was not the alcoholism that made patients with alcoholic liver disease less deserving of liver transplant, but rather their failure to seek treatment for alcoholism that made their claim for liver transplant weaker, compared with those who developed cirrhosis through no fault of their own.¹² This argument is problematic. For example, patients with nonalcoholic steatohepatitis (NASH) are often compared with patients with alcoholic liver disease when it comes to modifiable behaviors that affect their health, whether it is through weight loss or abstinence, respectively. Yet, there is very little argument for lower priority for NASH patients who failed to lose weight. Secondly, alcohol use disorder is a psychosocially complex disease that requires a multidisciplinary treatment approach. Substance abuse rehabilitation is not readily available to most patients and could single out vulnerable patients from lower socioeconomic classes who are at higher risk for developing alcohol use disorder. Imposing a strict abstinence period regardless of a patient’s medical need is punitive and does not treat the underlying disease. Instead of focusing on disease causality, we ought to advocate for medical treatment of the underlying disease.

Conclusions

Liver transplant effectively functions as a zero-sum game. Efforts to save individual patients with severe alcoholic hepatitis can result in trade-offs to other patients on the wait list. Balancing the ethical principles of utility and justice is challenging. A strict 6-month rule, while convenient, does not strike the balance. The decision to transplant a patient with alcoholic hepatitis should be made on a case-by-case basis. As stewards of donor organs, transplant centers have a duty to carefully evaluate a potential candidate based on medical needs and recipient outcome without the influence of bias. We feel that, when considering liver transplant in patients with severe alcoholic hepatitis, the principle of justice or fairness to the patient is the overriding ethical principle. Provided the patient meets medical and psychosocial criteria that available evidence suggests would result in long-term survival post transplantation, we would support listing for liver transplantation.

References

1. Goldberg D et al. Gastroenterology, 2017;152(5):1090-9.e1.

2. Cholankeril G, Ahmed A. Clin Gastroenterol Hepatol. 2018;16(8):1356-8.

3. Neuberger J et al. J Hepatol. 2002;36(1):130-7.

4. DiMartini A, et al. Clin Liver Dis. 2011;15(4):727-51.

5. Mathurin P et al. N Engl J Med, 2011;365(19):1790-800.

6. Im GY et al. Am J Transplant. 2016;16(3):841-9.

7. Lee BP et al. Ann Surg. 2017;265(1):20-9.

8. Lee BP et al. Gastroenterology. 2018. 155(2):422-30.e1.

9. Asrani SK et al. Liver Transpl. 2020;26(1):127-40.

10. Singal AK et al. Transplantation. 2013;95(5):755-60.

11. Stroh G et al. Am J Transplant. 2015;15(6):1598-604.

12. Moss AH, Siegler M. JAMA. 1991;265(10):1295-8.

Dr. Wang is a gastroenterology fellow in the division of gastroenterology, hepatology, and nutrition, department of internal medicine, University of Chicago Medicine; Dr. Aronsohn is associate professor in the division of gastroenterology, hepatology, and nutrition, department of internal medicine, University of Chicago Medicine.

Case

A 45-year-old male was admitted to the hospital with severe alcoholic hepatitis. After several days of supportive care and medical therapy, the patient continued to show clinical decline. The patient is now admitted to the intensive-care unit with a Maddrey’s Discriminant Function score of 45 and a Model for End-Stage Liver Disease score of 38. He has no other significant medical comorbidities. On rounds, the patient’s wife, who is at the bedside, asks the team whether her husband would be a candidate for liver transplantation.

Should this patient be offered liver transplantation? What medical and psychosocial factors should we consider? What ethical principles should we consider?

Medical considerations

With the advent of direct-acting antivirals (DAAs), there has been a decline in the number of liver transplants performed for hepatitis C virus–related cirrhosis.¹ Instead, alcohol-related liver disease (ALD) has become the most common indication for liver transplant in the United States.² The 6-month abstinence requirement was a widespread practice within the transplant community that would exclude any patients who were actively drinking from being considered for liver transplant. However, data are inconclusive whether the 6-month rule serves as a predictor of future drinking or poor outcomes after liver transplant.^3,4 Unfortunately, many patients with severe alcoholic hepatitis will not survive long enough to fulfill the 6-month requirement.⁵

In 2011, Mathurin and colleagues led the pivotal European trial demonstrating the effectiveness of liver transplant as a rescue option for highly selected patients with severe alcoholic hepatitis.⁵ The selection criteria included patients with severe alcoholic hepatitis unresponsive to medical therapy, first liver-decompensating event, presence of close supportive family members, absence of severe psychiatric disorders, and agreement by patients to adhere to lifelong total alcohol abstinence. The study showed that the 6-month survival rate of patients who received early liver transplant was 77%, compared with 25% among those who did not. The positive outcomes were subsequently replicated at several centers in the United States, and this led to a wider adoption of early liver transplant for severe alcoholic hepatitis.^6-8

Psychosocial considerations

At present, we do not have well-validated consensus selection criteria to identify patients with alcoholic hepatitis most suitable for liver transplant. Each transplant center employs its own set of selection criteria with slight variations from the original European trial which prompted a national expert consensus meeting in Dallas in 2019.⁹ The consortium published a set of guidelines for centers planning to or already performing alcoholic hepatitis transplants. The proposed criteria to determine liver transplant candidacy are the following: 1) patients presenting for the first time with decompensated liver disease who are nonresponders to medical therapy; 2) assessment by a multidisciplinary psychosocial team including a social worker and an additional specialist; 3) no repeated unsuccessful attempts at addiction rehabilitation; 4) lack of other substance use/dependence; 5) insight with a commitment to sobriety; 6) presence of close supportive family members. The goal was to select candidates with the least likelihood of relapse in the hope of preventing poor outcomes after liver transplant. A study by a Johns Hopkins group comparing patients with severe alcoholic hepatitis who underwent careful psychosocial evaluation versus alcoholic cirrhosis with at least 6 months abstinence found that the survival and alcohol relapse rates were similar between the two groups.⁷

Ethical considerations

Expanding liver transplant indications to include some patients with severe alcoholic hepatitis will uphold the principle of beneficence given clear evidence of a survival benefit. In addition, graft survival rates were comparable with those of patients who underwent liver transplant for other causes.¹⁰ However, in an era of persistent organ shortage, it is important to balance justice or fairness to the patient with utilitarian policies that optimize outcomes for all who are in need of liver transplantation.

Justice

Justice means fair and equal distribution of scarce health resources to patients without bias on account of sex, race, wealth, and the nature of a patient’s disease. Based on the principle of justice, a patient with alcoholic hepatitis should be afforded opportunities for liver transplant equal to patients with other etiologies of liver disease.

Opponents of adoption of liver transplant for alcoholic hepatitis often base their reluctance on the following: patients’ failure to gain control of their alcohol use disorder, fears of alcohol relapse, and ultimately perceptions that these patients may be less deserving, compared with patients with other etiologies of liver disease. But, is this fair to the patient?

Alcohol use disorder, in general, is stigmatized and is considered by some to be a self-inflicted condition. As a medical community, we do not withhold life-saving treatment from patients who had inflicted their own injuries. Nevertheless, the stigma against alcoholism is so entrenched in our society that some fear transplanting a patient who is actively drinking would negatively affect the public’s perception of the transplant community and thus diminish the organ donation rate and harm the common good. Interestingly, a public opinion survey actually showed that the majority of respondents were at least neutral about the idea of transplanting patients with alcoholic hepatitis.¹¹

Utility

Utility means achieving the greatest good for the greatest number of patients. The absolute scarcity of available organs imposes a need for a strict allocation decision. A liver that is used for a patient with severe alcoholic hepatitis is an organ not used for another patient suffering chronic liver disease. It is worth noting that about 20% of patients with severe alcoholic hepatitis might recover without a transplant.⁵ That means about one out of five liver transplants performed for alcoholic hepatitis may have been done in a patient who would have recovered without a transplant. Does this policy optimize the greatest good for everyone who is on the wait list?

Moss and Siegler argued that it was not the alcoholism that made patients with alcoholic liver disease less deserving of liver transplant, but rather their failure to seek treatment for alcoholism that made their claim for liver transplant weaker, compared with those who developed cirrhosis through no fault of their own.¹² This argument is problematic. For example, patients with nonalcoholic steatohepatitis (NASH) are often compared with patients with alcoholic liver disease when it comes to modifiable behaviors that affect their health, whether it is through weight loss or abstinence, respectively. Yet, there is very little argument for lower priority for NASH patients who failed to lose weight. Secondly, alcohol use disorder is a psychosocially complex disease that requires a multidisciplinary treatment approach. Substance abuse rehabilitation is not readily available to most patients and could single out vulnerable patients from lower socioeconomic classes who are at higher risk for developing alcohol use disorder. Imposing a strict abstinence period regardless of a patient’s medical need is punitive and does not treat the underlying disease. Instead of focusing on disease causality, we ought to advocate for medical treatment of the underlying disease.

Conclusions

Liver transplant effectively functions as a zero-sum game. Efforts to save individual patients with severe alcoholic hepatitis can result in trade-offs to other patients on the wait list. Balancing the ethical principles of utility and justice is challenging. A strict 6-month rule, while convenient, does not strike the balance. The decision to transplant a patient with alcoholic hepatitis should be made on a case-by-case basis. As stewards of donor organs, transplant centers have a duty to carefully evaluate a potential candidate based on medical needs and recipient outcome without the influence of bias. We feel that, when considering liver transplant in patients with severe alcoholic hepatitis, the principle of justice or fairness to the patient is the overriding ethical principle. Provided the patient meets medical and psychosocial criteria that available evidence suggests would result in long-term survival post transplantation, we would support listing for liver transplantation.

References

1. Goldberg D et al. Gastroenterology, 2017;152(5):1090-9.e1.

2. Cholankeril G, Ahmed A. Clin Gastroenterol Hepatol. 2018;16(8):1356-8.

3. Neuberger J et al. J Hepatol. 2002;36(1):130-7.

4. DiMartini A, et al. Clin Liver Dis. 2011;15(4):727-51.

5. Mathurin P et al. N Engl J Med, 2011;365(19):1790-800.

6. Im GY et al. Am J Transplant. 2016;16(3):841-9.

7. Lee BP et al. Ann Surg. 2017;265(1):20-9.

8. Lee BP et al. Gastroenterology. 2018. 155(2):422-30.e1.

9. Asrani SK et al. Liver Transpl. 2020;26(1):127-40.

10. Singal AK et al. Transplantation. 2013;95(5):755-60.

11. Stroh G et al. Am J Transplant. 2015;15(6):1598-604.

12. Moss AH, Siegler M. JAMA. 1991;265(10):1295-8.

Dr. Wang is a gastroenterology fellow in the division of gastroenterology, hepatology, and nutrition, department of internal medicine, University of Chicago Medicine; Dr. Aronsohn is associate professor in the division of gastroenterology, hepatology, and nutrition, department of internal medicine, University of Chicago Medicine.

Editor’s Note: I am very excited to introduce a section to The New Gastroenterologist that will address topics in clinical medical ethics we frequently face as gastroenterologists. There are several inherent ethical issues in gastroenterology that are not often explicitly discussed, such as periprocedural code status, informed consent, transplantation, performance of endoscopy in the critically ill, and nutrition support in the setting of end of life care. Often the most difficult decisions we make as clinicians are fraught with ethical implications which can be daunting and difficult to navigate. The goal of this section is to address these issues in a case-based format to offer some guidance to young gastroenterologists grappling with similar scenarios.

This month’s issue features the inaugural piece for this series, written by Dr. Lauren Feld (University of Washington), which discusses a clinical scenario in which a patient with a preexisting do-not-resuscitate (DNR) order is about to undergo endoscopy. The article provides a systematic approach to periprocedural code status and highlights existing guidelines that are generally not well known among gastroenterologists.
 

Vijaya L. Rao, MD
Editor in Chief

An 89-year old female with history of heart failure with reduced ejection fraction, chronic obstructive pulmonary disease, and dementia is admitted to the intensive care unit (ICU) with melena and acute post-hemorrhagic anemia. The family member designated as the patient’s power of attorney (POA) agrees that her code status upon admission will be do-not-resuscitate and do-not-intubate (DNR/DNI) without plan for invasive procedures. However, she has continued overt bleeding with concomitant hemodynamic instability. The POA and ICU team are now asking for urgent endoscopic evaluation, but do not agree to temporary code reversal for the duration of the procedure.

This vignette highlights an important distinction between a patient’s goals of care and the code status. While these two terms are often erroneously used interchangeably, “code status” refers to a patient’s wishes in the event of cardiopulmonary arrest, while “goals of care” refers to a more comprehensive understanding of what care fits within a patient’s values. Patients or their families may still desire interventions such as procedures, but not wish to have a resuscitation attempt in the event of cardiopulmonary arrest. This leads to the commonly encountered clinical scenario in which a patient planning to undergo endoscopy has an active DNR order.

Frequently, DNR orders are temporarily rescinded prior to invasive procedures. There are several reasons this occurs. First, patients or decision makers may decide that the improved rates of survival in intraprocedural arrests changes their risk-benefit assessment about resuscitation procedures. Secondly, proceduralists may feel an ethical duty to resuscitate a patient if the cause of the arrest is considered iatrogenic and potentially reversible. In addition, proceduralists may worry about legal or professional risk if a patient suffers cardiopulmonary arrest during a procedure and an attempt at resuscitation does not occur.

While this is a frequently encountered clinical scenario, there is wide variation in clinical practice. This variation led to the creation of guidelines set forth by the American Society of Anesthesiologists in 1993 and subsequently adopted by the American College of Surgeons. These guidelines recommend a discussion between the physician and the patient prior to the procedure, utilizing shared decision-making around three options: 1) a full attempt at resuscitation; 2) a limited attempt at resuscitation defined with regard to specific procedures; and 3) a limited attempt at resuscitation defined with regard to the patient’s goals and values.

However, these guidelines are both not well known and frequently not applied amongst clinicians and ancillary staff. Patients are frequently told that they must reverse their DNR order to full code prior to undergoing endoscopy. Dissemination of a systematic approach to a patient with a DNR order who requires endoscopy is important to ensure patients have autonomy over their medical decision-making, while also ensuring that health care professionals feel comfortable with their decisions.

• Physicians should avoid one-size-fits-all policies, such as the expectation that patients routinely return to full code for procedures.
• The patient and/or decision-makers should have a discussion regarding the risks during the procedure and potential reversibility of these risks.
• The patient should be presented with the option to either reverse to full code, refuse specific resuscitative measures such as defibrillation or intubation, or be allowed to explain his or her own views on goals of care and allow the procedural team to use their clinical judgment should an emergency arise.
• Physicians should be specific regarding the duration of the code status change. For example, in a patient who has reversed the code status to allow a full resuscitation attempt, the team and patient should discuss how long the patient will remain intubated after the procedure.
• This discussion should be documented carefully in the chart to assist with dissemination amongst the medical team.

This process will ensure that clear guidelines are defined such that everyone, including the patient’s potential decision makers, understand to what they are agreeing.

While physicians and care teams are primarily concerned with providing high-quality and individualized care to patients, it is true that concerns surrounding medicolegal risk are present. Careful informed consent and informed refusal conversations will reduce risk. Indeed, in a patient who has a DNR order, physicians are more likely to be at risk performing resuscitation efforts than withholding them. Communication between patients, families, and physicians remains the foundation for a trusting relationship and decreased litigation risk.

For this patient, engaging her POA in an honest and thorough discussion about her goals of care, as well as the risks of both performing and not performing the upper endoscopy are critical to her care. If her POA wishes to proceed with the procedure and have her remain DNR during the procedure, this should be documented and adhered to. Ultimately, the best outcome for this patient will occur with an individualized risk-benefit assessment and open, frequent communication among the care team and her POA.
 

Dr. Feld is a gastroenterology and hepatology fellow in the department of gastroenterology and hepatology, University of Washington, Seattle. She has no conflicts of interest.

Editor’s Note: I am very excited to introduce a section to The New Gastroenterologist that will address topics in clinical medical ethics we frequently face as gastroenterologists. There are several inherent ethical issues in gastroenterology that are not often explicitly discussed, such as periprocedural code status, informed consent, transplantation, performance of endoscopy in the critically ill, and nutrition support in the setting of end of life care. Often the most difficult decisions we make as clinicians are fraught with ethical implications which can be daunting and difficult to navigate. The goal of this section is to address these issues in a case-based format to offer some guidance to young gastroenterologists grappling with similar scenarios.

This month’s issue features the inaugural piece for this series, written by Dr. Lauren Feld (University of Washington), which discusses a clinical scenario in which a patient with a preexisting do-not-resuscitate (DNR) order is about to undergo endoscopy. The article provides a systematic approach to periprocedural code status and highlights existing guidelines that are generally not well known among gastroenterologists.
 

Vijaya L. Rao, MD
Editor in Chief

An 89-year old female with history of heart failure with reduced ejection fraction, chronic obstructive pulmonary disease, and dementia is admitted to the intensive care unit (ICU) with melena and acute post-hemorrhagic anemia. The family member designated as the patient’s power of attorney (POA) agrees that her code status upon admission will be do-not-resuscitate and do-not-intubate (DNR/DNI) without plan for invasive procedures. However, she has continued overt bleeding with concomitant hemodynamic instability. The POA and ICU team are now asking for urgent endoscopic evaluation, but do not agree to temporary code reversal for the duration of the procedure.

This vignette highlights an important distinction between a patient’s goals of care and the code status. While these two terms are often erroneously used interchangeably, “code status” refers to a patient’s wishes in the event of cardiopulmonary arrest, while “goals of care” refers to a more comprehensive understanding of what care fits within a patient’s values. Patients or their families may still desire interventions such as procedures, but not wish to have a resuscitation attempt in the event of cardiopulmonary arrest. This leads to the commonly encountered clinical scenario in which a patient planning to undergo endoscopy has an active DNR order.

Frequently, DNR orders are temporarily rescinded prior to invasive procedures. There are several reasons this occurs. First, patients or decision makers may decide that the improved rates of survival in intraprocedural arrests changes their risk-benefit assessment about resuscitation procedures. Secondly, proceduralists may feel an ethical duty to resuscitate a patient if the cause of the arrest is considered iatrogenic and potentially reversible. In addition, proceduralists may worry about legal or professional risk if a patient suffers cardiopulmonary arrest during a procedure and an attempt at resuscitation does not occur.

While this is a frequently encountered clinical scenario, there is wide variation in clinical practice. This variation led to the creation of guidelines set forth by the American Society of Anesthesiologists in 1993 and subsequently adopted by the American College of Surgeons. These guidelines recommend a discussion between the physician and the patient prior to the procedure, utilizing shared decision-making around three options: 1) a full attempt at resuscitation; 2) a limited attempt at resuscitation defined with regard to specific procedures; and 3) a limited attempt at resuscitation defined with regard to the patient’s goals and values.

However, these guidelines are both not well known and frequently not applied amongst clinicians and ancillary staff. Patients are frequently told that they must reverse their DNR order to full code prior to undergoing endoscopy. Dissemination of a systematic approach to a patient with a DNR order who requires endoscopy is important to ensure patients have autonomy over their medical decision-making, while also ensuring that health care professionals feel comfortable with their decisions.

• Physicians should avoid one-size-fits-all policies, such as the expectation that patients routinely return to full code for procedures.
• The patient and/or decision-makers should have a discussion regarding the risks during the procedure and potential reversibility of these risks.
• The patient should be presented with the option to either reverse to full code, refuse specific resuscitative measures such as defibrillation or intubation, or be allowed to explain his or her own views on goals of care and allow the procedural team to use their clinical judgment should an emergency arise.
• Physicians should be specific regarding the duration of the code status change. For example, in a patient who has reversed the code status to allow a full resuscitation attempt, the team and patient should discuss how long the patient will remain intubated after the procedure.
• This discussion should be documented carefully in the chart to assist with dissemination amongst the medical team.

This process will ensure that clear guidelines are defined such that everyone, including the patient’s potential decision makers, understand to what they are agreeing.

While physicians and care teams are primarily concerned with providing high-quality and individualized care to patients, it is true that concerns surrounding medicolegal risk are present. Careful informed consent and informed refusal conversations will reduce risk. Indeed, in a patient who has a DNR order, physicians are more likely to be at risk performing resuscitation efforts than withholding them. Communication between patients, families, and physicians remains the foundation for a trusting relationship and decreased litigation risk.

For this patient, engaging her POA in an honest and thorough discussion about her goals of care, as well as the risks of both performing and not performing the upper endoscopy are critical to her care. If her POA wishes to proceed with the procedure and have her remain DNR during the procedure, this should be documented and adhered to. Ultimately, the best outcome for this patient will occur with an individualized risk-benefit assessment and open, frequent communication among the care team and her POA.
 

Dr. Feld is a gastroenterology and hepatology fellow in the department of gastroenterology and hepatology, University of Washington, Seattle. She has no conflicts of interest.

Editor’s Note: I am very excited to introduce a section to The New Gastroenterologist that will address topics in clinical medical ethics we frequently face as gastroenterologists. There are several inherent ethical issues in gastroenterology that are not often explicitly discussed, such as periprocedural code status, informed consent, transplantation, performance of endoscopy in the critically ill, and nutrition support in the setting of end of life care. Often the most difficult decisions we make as clinicians are fraught with ethical implications which can be daunting and difficult to navigate. The goal of this section is to address these issues in a case-based format to offer some guidance to young gastroenterologists grappling with similar scenarios.

This month’s issue features the inaugural piece for this series, written by Dr. Lauren Feld (University of Washington), which discusses a clinical scenario in which a patient with a preexisting do-not-resuscitate (DNR) order is about to undergo endoscopy. The article provides a systematic approach to periprocedural code status and highlights existing guidelines that are generally not well known among gastroenterologists.
 

Vijaya L. Rao, MD
Editor in Chief

An 89-year old female with history of heart failure with reduced ejection fraction, chronic obstructive pulmonary disease, and dementia is admitted to the intensive care unit (ICU) with melena and acute post-hemorrhagic anemia. The family member designated as the patient’s power of attorney (POA) agrees that her code status upon admission will be do-not-resuscitate and do-not-intubate (DNR/DNI) without plan for invasive procedures. However, she has continued overt bleeding with concomitant hemodynamic instability. The POA and ICU team are now asking for urgent endoscopic evaluation, but do not agree to temporary code reversal for the duration of the procedure.

This vignette highlights an important distinction between a patient’s goals of care and the code status. While these two terms are often erroneously used interchangeably, “code status” refers to a patient’s wishes in the event of cardiopulmonary arrest, while “goals of care” refers to a more comprehensive understanding of what care fits within a patient’s values. Patients or their families may still desire interventions such as procedures, but not wish to have a resuscitation attempt in the event of cardiopulmonary arrest. This leads to the commonly encountered clinical scenario in which a patient planning to undergo endoscopy has an active DNR order.

Frequently, DNR orders are temporarily rescinded prior to invasive procedures. There are several reasons this occurs. First, patients or decision makers may decide that the improved rates of survival in intraprocedural arrests changes their risk-benefit assessment about resuscitation procedures. Secondly, proceduralists may feel an ethical duty to resuscitate a patient if the cause of the arrest is considered iatrogenic and potentially reversible. In addition, proceduralists may worry about legal or professional risk if a patient suffers cardiopulmonary arrest during a procedure and an attempt at resuscitation does not occur.

While this is a frequently encountered clinical scenario, there is wide variation in clinical practice. This variation led to the creation of guidelines set forth by the American Society of Anesthesiologists in 1993 and subsequently adopted by the American College of Surgeons. These guidelines recommend a discussion between the physician and the patient prior to the procedure, utilizing shared decision-making around three options: 1) a full attempt at resuscitation; 2) a limited attempt at resuscitation defined with regard to specific procedures; and 3) a limited attempt at resuscitation defined with regard to the patient’s goals and values.

However, these guidelines are both not well known and frequently not applied amongst clinicians and ancillary staff. Patients are frequently told that they must reverse their DNR order to full code prior to undergoing endoscopy. Dissemination of a systematic approach to a patient with a DNR order who requires endoscopy is important to ensure patients have autonomy over their medical decision-making, while also ensuring that health care professionals feel comfortable with their decisions.

• Physicians should avoid one-size-fits-all policies, such as the expectation that patients routinely return to full code for procedures.
• The patient and/or decision-makers should have a discussion regarding the risks during the procedure and potential reversibility of these risks.
• The patient should be presented with the option to either reverse to full code, refuse specific resuscitative measures such as defibrillation or intubation, or be allowed to explain his or her own views on goals of care and allow the procedural team to use their clinical judgment should an emergency arise.
• Physicians should be specific regarding the duration of the code status change. For example, in a patient who has reversed the code status to allow a full resuscitation attempt, the team and patient should discuss how long the patient will remain intubated after the procedure.
• This discussion should be documented carefully in the chart to assist with dissemination amongst the medical team.

This process will ensure that clear guidelines are defined such that everyone, including the patient’s potential decision makers, understand to what they are agreeing.

While physicians and care teams are primarily concerned with providing high-quality and individualized care to patients, it is true that concerns surrounding medicolegal risk are present. Careful informed consent and informed refusal conversations will reduce risk. Indeed, in a patient who has a DNR order, physicians are more likely to be at risk performing resuscitation efforts than withholding them. Communication between patients, families, and physicians remains the foundation for a trusting relationship and decreased litigation risk.

For this patient, engaging her POA in an honest and thorough discussion about her goals of care, as well as the risks of both performing and not performing the upper endoscopy are critical to her care. If her POA wishes to proceed with the procedure and have her remain DNR during the procedure, this should be documented and adhered to. Ultimately, the best outcome for this patient will occur with an individualized risk-benefit assessment and open, frequent communication among the care team and her POA.
 

Dr. Feld is a gastroenterology and hepatology fellow in the department of gastroenterology and hepatology, University of Washington, Seattle. She has no conflicts of interest.