Re: Cause of death: Schizophrenia? Authors reply

Thank you for your thoughtful analysis of Jamie’s case. It is important to note that Jamie’s case is fictionalized, albeit based loosely on actual circumstances, so details about him or decisions made in terms of interventions are not discussed.

We agree that Jamie, as described, could be certified to treat the schizophrenia (and the HIV if his delusions are secondary to HIV) as he is harming himself by not considering treatment for HIV. The goal would be to improve his capacity to make decisions for himself about HIV treatment. Involuntary hospitalization to treat the HIV, if it is not contributing to his delusions, is more problematic. Consent for treatment from a substitute decision maker would be needed and, as you note, there would be significant practical challenges in treating the HIV once Jamie is discharged from hospital. Even with the current advent of highly effective and simple fixed-dose combination regimens, these medications need to be taken daily, and 95% adherence is necessary for effectiveness. This would be virtually impossible to carry out without the consent of the patient. Treating the HIV in hospital, knowing the treatment is short term, would be questionable both clinically and ethically. Partial treatment may render an effective HIV regimen less effective. Treating the cause of his delusions in the hope that Jamie would consent to treatment for HIV would be our first goal.

We acknowledge Dr Anderson’s legitimate concerns about harm to the public and suggest that there are other factors to consider. Universal precautions, when engaging in sexual activity, are a public health expectation. It would be difficult to hold Jamie solely responsible for any HIV transmission unless he is a sexual predator or lying about his diagnosis, which we have no reason to believe that he is doing. But, primarily, we return to the goal of improving his capacity to make decisions about HIV treatment. If his capacity is improved it may also resolve the issue of possible harm to others—he may gain insight into the need for protection when engaged in sexual activity or recognize that treatment for HIV can decrease his viral load. This would be our first approach to addressing harm to others.

We agree that deception should be a last resort and hiding medication in food is an extreme example of deception. In Jamie’s case, even if one were willing to consider concealing medication in his food, this would not be possible unless his food and his intake of it were controlled. But deception can come in many forms, some that are likely more acceptable than others. For example, if Jamie’s delusions cause him to believe that he has a kidney infection that will be alleviated by taking HIV medications, would we insist on correcting him? And should he continue to believe he had kidney problems in the face of our correction, would it be deceptive and wrong to proceed with treatment for HIV? We would need to consider if carrying on with treatment is, in fact, deception and, if so, if it is, on balance, ethically acceptable.

Considering these dilemmas is complex. It is a challenge to know what is in the best interest of someone like Jamie when he has no ability to make an informed decision for himself, and no ability to act in his own best interests. How far we should go, in what may be considered a dehumanizing process, in order to give Jamie the care that most would accept in order to save their lives, is a live question. Working with thoughtful health care teams and substitute decision makers, and keeping the unique character and context of each individual patient in the forefront, is our best approach to grappling with these questions.
—Jenny M. Young, MSW, MA 
—Bethan Everett, MBA, PhD