Settling for second best: when should doctors agree to parental demands for suboptimal medical treatment?

Background Doctors sometimes encounter parents who object to prescribed treatment for their children, and request suboptimal substitutes be administered instead (suboptimal being defined as less effective and/or more expensive). Previous studies have focused on parental refusal of treatment and when this should be permitted, but the ethics of requests for suboptimal treatment has not been explored. Methods The paper consists of two parts: an empirical analysis and an ethical analysis. We performed an online survey with a sample of the general public to assess respondents’ thresholds for acceptable harm and expense resulting from parental choice, and the role that religion played in their judgement. We also identified and applied existing ethical frameworks to the case described in the survey to compare theoretical and empirical results. Results Two hundred and forty-two Mechanical Turk workers took our survey and there were 178 valid responses (73.6%). Respondents’ agreement to provide treatment decreased as the risk or cost of the requested substitute increased (p<0.001). More than 50% of participants were prepared to provide treatment that would involve a small absolute increased risk of death for the child (<5%) and a cost increase of US$<500, respectively. Religiously motivated requests were significantly more likely to be allowed (p<0.001). Existing ethical frameworks largely yielded ambiguous results for the case. There were clear inconsistencies between the theoretical and empirical results. Conclusion Drawing on both survey results and ethical analysis, we propose a potential model and thresholds for deciding about the permissibility of suboptimal treatment requests.


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[The parents of this child have an objection against this treatment. They tell you that the reason they are objecting to Medicine A is because the main ingredient of the drug is derived from an animal and they consider it ethically wrong to use animal products for human benefit.] In the following scenarios, imagine yourself to be in the position of the doctor. You will be asked whether you agree or disagree with allowing the parents' request.
How much do you agree with the following statement?
You should permit the parents to refuse the medicine with the result that their child will be left untreated?
There is a different form of Medicine A available that the parents will accept ("Medicine B"). However Medicine B is less effective than Medicine A. Medicine A and B are the same cost.
There is no difference in the risk of complications but Medicine B has a higher risk of death. If 100 infants are treated with Medicine B rather than A, 4 less infants will survive (only 11 will have their lives saved). How much do you agree with the following statement?
You should allow the parents to choose this different treatment for their child.
There is no difference in the risk of death, but Medicine B has a 10% higher risk of bleeding in the brain. Bleeding in the brain could result in physical and mental disability for the child. How much do you agree with the following statement?
You should allow the parents to choose this different treatment for their child.
There is no difference in the risk of death, but Medicine B has a 10% higher risk of air leak around the lung. If the child develops an air leak they will need a painful procedure to drain the air. How much do you agree with the following statement?
You should allow the parents to choose this different treatment for their child.
There is no difference in the risk of complications, but Medicine B has a higher risk of death. If 100 infants are treated with Medicine B rather than A, 14 less infants will survive (only 1 will have their life saved). How much do you agree with the following statement?
You should allow the parents to choose this different treatment for their child.
There is no difference in the risk of complications, but Medicine B has a higher risk of death. If 100 infants are treated with Medicine B rather than A, 9 less infants will survive (only 6 will have their lives saved). How much do you agree with the following statement?
You should allow the parents to choose this different treatment for their child.

SECTION TWO:
In a public healthcare system, there is a finite and often limited amount of resources. Extra money spent on one patient may mean that treatment is not available for another patient.
There parents are low income earners and qualify for Medicaid; a government funded program that provides health coverage to those who are strugglien financially. The treatment of this premature baby is being publicly funded. Medicine A costs $USD400 per treatment.
For the following scenarios, assume that Medicine B will produce the same health outcomes for an infants as Medicine A. However, Medicine B is more expensive than Medicine A.
Medicine B costs an extra $100 (this is the cost of giving 10 patients a course of antibiotics). How much do you agree with the following statement?
You should allow the parents to choose this different treatment for their child.
Medicine B costs an extra $500 (this is the cost of giving 16 patients a yearly flu shot). How much do you agree with the following statement?
You should allow the parents to choose this different treatment for their child.
Medicine B costs an extra $1000 (this is the cost of performing 4 abdominal ultrasounds). How much do you agree with the following statement?
You should allow the parents to choose this different treatment for their child.
Medicine B costs an extra $10,000 (this is the cost of treatment for a patient with leukaemia for 1 month). How much do you agree with the following statement?
You should allow the parents to choose this different treatment for their child.
Medicine B costs an extra $100,000 (this is the cost of performing a complete hip replacement surgery on 5 patients). How much do you agree with the following statement?
You should allow the parents to choose this different treatment for their child.
Medicine B costs an extra $1,000,000 (this is the cost of giving a kidney transplant to 4 patients). How much do you agree with the following statement?
You should allow the parents to choose this different treatment for their child.
Medicine B costs an extra $1,000,000 (this is the cost of giving a kidney transplant to 4 patients). This is a test question to make sure you are paying attention.
Please leave this question blank.

SECTION THREE:
Another couple have had a premature baby who is also in need of Medicine A. They too object to the use of this medication.
The parents have approached you (the doctor) with their request for an alternative treatment. You sit down with them to have a discussion as to why they are objecting to this treatment.
You will be asked how much you agree with the following statements.
The parents object to Medicine A because it is derived from pork. They are Jewish and believe the use of a pigderived drug is unacceptable.
The alternative medicine they are requesting has a higher chance of death than Medicine A. How much do you agree with the following statement?
You should allow the parents to choose this alternative treatment for their child.
The alternative medicine they are requesting is double the cost of Medicine A. How much do you agree with the following statement?
You should allow the parents to choose this alternative treatment for their child.
The parents object to Medicine A because it is derived from pork and they are vegans.
The alternative medicine they are requesting has a higher chance of death than Medicine A. How much do you agree with the following statement?
You should allow the parents to choose this alternative treatment for their child.
The alternative medicine they are requesting is double the cost of Medicine A. How much do you agree with the following statement?
You should allow the parents to choose this alternative treatment for their child.
The parents object to Medicine A because it is derived from pork and the mother believes she is allergic to pork. She fears the baby will be too. As a doctor you know that this is not a realistic possibility.
The alternative medicine they are requesting has a higher chance of death than Medicine A. How much do you agree with the following statement?
You should allow the parents to choose this alternative treatment for their child.
The alternative medicine they are requesting is double the cost of Medicine A. How much do you agree with the following statement?
You should allow the parents to choose this alternative treatment for their child.
The parents object to Medicine A because it is a stem cell treatment derived from the tissue of aborted fetuses. They are Christian and believe that the use of a drug made from the tissue of aborted fetuses is unacceptable.
The alternative medicine they are requesting has a higher chance of death than Medicine A. How much do you agree with the following statement?
You should allow the parents to choose this alternative treatment for their child.
The alternative medicine they are requesting is double the cost of Medicine A. How much do you agree with the following statement?
You should allow the parents to choose this alternative treatment for their child.
The parents object to Medicine A because it is derived from pork. They are Muslim and believe the use of a pigderived drug is unacceptable.
The alternative medicine they are requesting has a higher chance of death than Medicine A. How much do you agree with the following statement?
You should allow the parents to choose this alternative treatment for their child.
The alternative medicine they are requesting is double the cost of Medicine A. How much do you agree with the following statement?
You should allow the parents to choose this alternative treatment for their child.

SECTION FOUR:
In the following scenarios we would like you to again imagine that you are a doctor. You are caring for a child whose parents disagree with the treatment that you have advised.
A premature baby is extremely ill and only has a 1 in 1000 chance of survival. You (the doctor) and your medical team believe it is time to stop treatment, as the chance of survival is very low and the treatment is causing the child to suffer.
The parents request that you continue providing the treatment for 1 month. They are devoutly religious. Although they understand that there is only a very small chance of recovery, they are praying very hard and believe that a miracle will occur. How much do you agree with the following statement?
You should continue to provide the treatment The parents request that you continue providing the treatment for 1 month. They are not religious. Although they understand that there is only a very small chance of recovery, they hope that their child will defy the odds. How much do you agree with the following statement?
You should continue to provide the treatment A premature baby is very ill and has a very low blood count (they are severely anaemic). The medical team believe that the baby requires a blood transfusion which will improve their chance of survival.
The parents do not wish their child to have a blood transfusions because they are Jehovah's witnesses. How much do you agree with the following statement?
You should transfuse the baby against the parents' wishes The parents do not wish their child to have a blood transfusion because they have read that blood transfusions have a small risk of transmitting a serious infection like hepatitis. How much do you agree with the following statement?
You should transfuse the baby against the parents' wishes SECTION FIVE: Please answer the following questions about yourself. This helps us to understand survey responses Please note that all the information you provide (for the entire questionnaire) is completely anonymous.