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The schizophrenia spectrum disorders are defined by abnormalities in one or more of the following domains: delusions, hallucinations, disorganized thinking (speech), grossly disorganized or abnormal motor behavior (including catatonia), and negative symptoms (1). Associated with significant social and occupational dysfunction, schizophrenia is arguably one of the most debilitating diagnoses an individual can have. The lifetime prevalence of schizophrenia is approximately 0.3%–0.7%, although variation across countries has been reported (1). Approximately 5%–6% of patients with schizophrenia die by suicide, with about 20% attempting suicide at least once and with many more having significant suicidal ideation—often driven by command hallucinations to harm oneself or others (1). Thus, schizophrenia can be a devastating illness, not only through its effects on the individual patient’s functioning and quality of life but also through its effect on the individual’s core personality and unique characteristics. In addition, because patients with schizophrenia commonly lack insight into their disorder and/or their need for treatment, patients and their families may struggle to obtain appropriate, comprehensive, and ongoing care.
In addition to these challenges to the individual’s functioning across multiple domains, schizophrenia may also impair one’s ability to meet one or more of the key components of informed consent, such as the capacity for decision making and voluntariness. Although loss of capacity is by no means a given for patients with schizophrenia (i.e., the diagnosis should not be equated with lack of capacity [2]; decision-making capacity must be assessed in a domain- and task-specific manner), schizophrenia may be associated with diminished capacity to make certain kinds of decisions, under certain circumstances, especially if the decision intersects with specific delusional ideas.
From an ethics perspective, the principles of autonomy and truth-telling may sometimes conflict directly with the principles of doing good (beneficence) and avoiding harm (nonmaleficence) when working with patients with schizophrenia. Examples of this include telling half-truths to patients who are paranoid or encouraging and/or actively persuading patients to involve their family members in their care (3). In addition, psychiatry might be considered the primary specialty in which its practitioners are often called upon to determine whether a patient can make decisions on his or her own. In the case of schizophrenia, these determinations can be challenging and complex.
Therefore, the purpose of this commentary is to outline ethical principles that are commonly encountered in schizophrenia. Foundational medical ethical principles, listed here (4, 5), are discussed in relation to the case illustrations.
  A.Respect for persons: regard for an individual’s worth and dignity
  B.Autonomy: self-governance
  C.Beneficence: the responsibility to act in a way that seeks to provide the greatest benefit
  D.Fidelity: faithfulness to the interests of the patient
  E.Nonmaleficence: the commitment to do no harm
  F.Veracity: the duty of truth and honesty
  G.Justice: the act of fair treatment, without prejudice
  H.Privacy: protection of patients’ personal information
  I. Integrity: honorable conduct within the profession

Case Illustration 1

AB is a 28-year-old man who has a diagnosis of unspecified psychosis that began several years after he developed a chronic medical condition. He has decreased mobility and numerous difficulties because of these conditions, including the need for a percutaneous endoscopic gastrostomy (PEG) tube. Because he had such significant comorbid medical and psychiatric illness, he was hospitalized for 8 months on a medical unit to recover while being treated for suicidal ideation, depression, and psychosis by consulting psychiatrists. He also developed catatonia, was mute, and was unable to walk for over a year because of his comorbid medical and psychiatric conditions. After receiving significant medical treatment, AB resumed the ability to ambulate, to the point where he is now able to walk around his home (he lives with his parents) and around the block. Meanwhile, he has also been treated for the psychotic symptoms with olanzapine and lorazepam. His treatment was disrupted for a few weeks because of the COVID-19 pandemic, during which time AB developed increased psychotic symptoms. His paranoia included the belief that there were organizations of people after him, and he called 911 on multiple occasions because of his fears, resulting in multiple visits from the police to his home.
Over the past 2 months, he has not been cleaning or caring for the PEG tube site and has refused to allow his parents or other medical providers to examine it. AB’s mother believes that this is due to his delusional thoughts and paranoia surrounding the PEG tube. AB’s mother expresses concern about the wound site, which is showing signs of infection.
1.1 Which of the following would be a reasonable next step (or steps) for the psychiatrist? (Select all that apply)
  A. Have AB’s parents take a picture of the PEG tube site while AB is asleep and send this to his physicians for examination.
  B. Provide a short-term prescription of lorazepam to be administered to AB and then take him for examination of his PEG tube site by his medical providers.
  C. Obtain an ethics consultation.
  D. Do a capacity evaluation.
AB’s psychiatrist does a capacity evaluation and determines that AB does not have capacity to refuse examination of his PEG tube based on the following reasoning:
Communicating a choice: AB indicates that he does not want any medical care for his gastrostomy tube; his choice remains consistent from day to day and from hour to hour.
Understanding the relevant information: AB is unable to state any information about his medical condition or treatment. He is unable to state the possible risks, benefits, or alternatives to treatment and is unable to state the possible risks or benefits of no treatment.
Appreciation of the situation and its consequences: AB does not believe that there is anything wrong with him. He does not believe that he needs any treatment and is unable to state why his doctors recommend the treatment that they are recommending. His refusal to allow his PEG tube to be examined is related to paranoia from his psychotic disorder.
Reasoning about treatment options: AB is unable to engage in a rational process of manipulating the relevant information of the situation because of his paranoia. He is unable to compare treatment options and consequences and is unable to offer reasons for selection of a particular option.
Thus, it was determined that AB lacks the abilities to understand, appreciate, and reason about this medical decision, although he does have the ability to state a choice.
1.2 Which of the following ethical principles were upheld by performing a capacity evaluation as opposed to the first two choices listed for Question 1.1?
  A.Privacy and integrity
  B.Autonomy and fidelity
  C.Respect for persons and justice
  D.Beneficence and veracity
 An ethics consultation was also requested. The consultation question was summarized as, Can medical treatment be forced on an uncooperative patient who lacks capacity?
1.3 Which of the following is least likely to be recommended by the ethics consultant?
  A.If not already done, determine and document that AB lacks the capacity to make a decision regarding wound care (i.e., that he is incapable of providing an informed refusal).
  B.Assess whether benefits of the wound evaluation outweigh the burdens (including the use of sedating medications or physical restraint).
  C.If benefits outweigh the burdens, ask AB’s mother (surrogate decision maker) whether she agrees.
  D.If AB’s mother (surrogate decision maker) agrees, proceed with minimal necessary restraint (assuming efforts to obtain cooperation without constraint do not work) needed to provide indicated treatment.
  E.Recommend that AB’s mother (surrogate decision maker) consider obtaining probate conservatorship to help in the determination of future medical decisions for the benefit of AB.

Case Illustration 2

YS is a 61-year-old woman with a medical history of schizophrenia diagnosed in her early 20s. After a decade of having very limited contact with family and experiencing homelessness as a result of discontinuing of her antipsychotic medication, YS was hospitalized and restarted on an antipsychotic, after which she resumed contact with her family. YS expressed a desire to return to live with her family, although YS’s family stated many concerns that YS would again stop her medication. YS’s family was concerned that YS would then become belligerent, cause much strain in the household, and potentially return to the emergency room and experience homelessness again. After her hospitalization, YS’s family quickly established care with an outpatient psychiatrist. This psychiatrist noted that many patients with schizophrenia have limited insight into their illness, which often leads them to discontinue their medications on their own. The psychiatrist further noted that YS may need external motivations to stay on her medication and live with family.
2.1 Was it ethical for these external motivations to be suggested by the physician? What were the ethical principles involved in making this suggestion?
  A.Yes, the psychiatrist’s suggestion was ethical. The ethical principles involved are autonomy, fidelity, and beneficence.
  B.No, the psychiatrist’s suggestion was not ethical. The ethical principles involved are privacy, respect for persons, and justice.
 The outpatient psychiatrist suggests that the family let YS know that, to live with her family again, she needs to demonstrate stability by receiving a long-acting injectable antipsychotic each month. After being presented with this option, YS initially agrees but then changes her mind every few days.
2.2 Does the patient have the capacity to refuse the long-acting injectable medication? What are the guiding ethical principles that are being balanced in this part of the case?
  A.Yes, the patient has the capacity to refuse the medication. The ethical principles include integrity and justice.
  B.No, the patient does not have capacity to refuse the medication. The ethical principles include autonomy and fidelity.
  C.No, the patient does not have the capacity to refuse the medication. The ethical principles include respect for persons and nonmaleficence.
  D.No, the patient does not have the capacity to refuse the medication. The ethical principles include veracity and privacy.
 Even though the patient lacks capacity to make the decision, the long-acting injectable medication is not forced due to reasons of feasibility. The focus remains on helping YS stay on the oral antipsychotic medication to achieve stability. YS expresses that taking the medication helps her to make good decisions. The psychiatrist emphasizes the importance of continuing the medication for this reason. The psychiatrist does not mention that she hopes the antipsychotic will help decrease the severity and frequency of the voices YS hears. Furthermore, the psychiatrist does not explicitly tell YS that her psychiatric diagnosis is schizophrenia. Of note, YS has never asked for her diagnosis.
2.3 What are the ethical principles involved in deciding whether to leave out important information such as what the medication is primarily intended to treat or the patient’s diagnosis?
  A.Integrity and privacy
  B.Respect for persons and fidelity
  C.Veracity and nonmaleficence
  D.Autonomy and fidelity

Answers

 1.1.The answers are C and D. Choice A interferes with the principles of fidelity and autonomy. Choice B interferes with the principles of autonomy, nonmaleficence, and veracity. Choices C and D both avoid interfering with these principles.
 1.2.The answers are B and C. Choice B is the correct choice because autonomy (self-governance) and fidelity (faithfulness to the interests of the patient) are the most directly involved principles in this part of the case. AB did not want to have the PEG tube site observed, so his autonomy and fidelity were the principles most upheld by performing the capacity evaluation. Choice C is also correct, in that autonomy and respect for persons are tightly related. One respects autonomy out of respect for persons and dignity. Justice is a correct answer because rather than assuming a patient with schizophrenia lacks capacity, a capacity evaluation was actually performed. Choice A is not the best answer because privacy (protection of the patient’s personal information) and integrity (honorable conduct within the profession) are not immediately pertinent in this example. Although it may be argued that taking the picture of the PEG tube site would have interfered with the patient’s privacy and that performing a capacity evaluation as opposed to the other options would help support the principle of integrity, there exists another answer that is a better fit. Choice D is incorrect because beneficence (the responsibility to act in a way that provides the greatest benefit) and veracity (the duty of truth and honesty) are not the best answer choices provided here.
 1.3.The answer is E. Choice E is the only answer that is somewhat questionable, as the ethics question did not involve a request for input into obtaining probate conservatorship. Although a probate conservatorship might be advisable for AB, that topic was not put forth to the ethics consultants.
 2.1.The answer is A. Although whether the psychiatrist’s suggestion is ethical depends on the specific external motivation, what is known so far about the case makes the psychiatrist’s suggestion acceptable. Choice A is also correct because the principles of autonomy (self-governance), fidelity (faithfulness to the interests of the patient), and beneficence (the responsibility to act in a way that seeks to provide the greatest benefit) are more directly related to the case. Choice B is incorrect not only for stating that the psychiatrist’s suggestion is unethical, but also because the principles of privacy (protection of the patient’s personal information), respect for persons (regard for an individual’s worth and dignity), and justice (the act of fair treatment, without prejudice) are not as directly related in this example.
 2.2.The answer is B. The patient does not have capacity to refuse the medication because her consent to receive the medication wavers often. This is the first of the criteria for capacity, stating a clear and consistent choice. The ethical principles involved are autonomy (self-governance) and fidelity (faithfulness to the interests of the patient).
 2.3.The answer is C. Veracity (the duty of truth and honesty) and nonmaleficence (to do no harm) are the ethical principles being weighed in this part of the example. Should YS ask about her diagnosis or seek an explanation of how the psychiatrist is considering her symptoms or experience, then the psychiatrist should engage in a discussion appropriate to the questions, taking time to carefully explain in lay language the diagnosis and how the diagnosis is made.

Acknowledgments

The authors acknowledge David Conklin, M.D., and Kerstin Asquith, M.D., for their critiques.

References

1.
Diagnostic and Statistical Manual of Mental Disorders, 5th ed. Arlington, VA, American Psychiatric Publishing, 2013
2.
Dunn LB, Nowrangi MA, Palmer BW, et al: Assessing decisional capacity for clinical research or treatment: a review of instruments. Am J Psychiatry 2006; 163:1323–1334
3.
Howe E: Ethical considerations when treating patients with schizophrenia. Psychiatry (Edgmont) 2008; 5:59–64
4.
Bernert RA, Roberts LW: Ethical considerations in the assessment and management of suicide risk. Focus 2012;10:467–472.
5.
Roberts LW, Hoop JG, Dunn LB: Ethical aspects of psychiatry; in The American Psychiatric Publishing Textbook of Psychiatry, 5th ed. Edited by Hales R, Yudofsky S, Gabbard G. Washington, DC, American Psychiatric Publishing, 2008

Information & Authors

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Published in print: Fall 2020
Published online: 6 November 2020

Authors

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Nataly S. Beck, M.D. [email protected]
Department of Psychiatry and Behavioral Sciences, Stanford University, Stanford, CA.
Jacob S. Ballon, M.D., M.P.H.
Department of Psychiatry and Behavioral Sciences, Stanford University, Stanford, CA.

Notes

Send correspondence to Dr. Beck ([email protected]).

Competing Interests

The authors report no financial relationships with commercial interests.

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