Alexander Pope once stated in An Essay on Criticism “A little learning is a dangerous thing” (updated in modern times to the saying A little knowledge is a dangerous thing).
Here’s a conundrum.
Benjamin Dover has lymphoma and is a candidate for a bone marrow transplant. Ben is 10 years old. His parents, Mr. and Ms. Dover agree to be tested to see if either might be a suitable donor. Dr. Smith, the patient’s pediatric oncologist, spearheads the process.
When the lab results return, Dr. Smith learns that neither parent would be an ideal candidate. Dr. Smith also learns from the genetic testing that Mr. Dover cannot be Ben’s biological father.
Mr. and Ms. Dover have been married for 15 years, and by outward appearances, seem to have a close and loving relationship. Further, Ms. Dover did not express any anxiety about the genetic testing.
Dr. Smith does not believe either Benjamin or Mr. Dover knows who the actual biological father is. In other words, Dr. Smith suspects there’s a secret that has been kept for a long time – but is not sure.
What to do?
(1) Simply report back to the parents that neither was found to be an ideal donor?
(2) Approach Ms. Dover privately and explain what was learned? See if Ms. Dover is open to locating the biological father to see if he’d be tested as potential donor?
(3) What about the medical records? What it it states that Mr. Dover has no genetic overlap with Ben?
There’s no perfect answer to this. Any answer involving multiple parties will necessitate compromise of one or more ethical principles.
On the one hand, Ben is the patient. Dr. Smith should advocate for her patient. That means, do everything possible to find a suitable donor. The good news is that in 2014, there are tissue banks that make it easier to find bone marrow donor matches. And donating bone marrow is not a “disfiguring process.” So, Dr. Smith could conceivably just report – “Neither of you are good donors. Let’s see what the tissue bank has.” But, what if Ben needed a kidney, and not bone marrow?
Ms. Dover is central to the drama. It probably makes good sense to privately bring her into the discussion. But, she might request that Dr. Smith not share her secret with Ben or Mr. Dover. OK. Not unreasonable. Ben’s the patient. And the information might cause familial discord. Mr. Dover might freak out. Ben might freak out. Not the best environment for treating cancer. Maybe Dr. Smith and the mother agree to keep the secret. But, what happens when Ben turns 18 and asks the good doctor lots of questions?
Also, once Ms. Dover is aware her secret is out, should Dr. Smith prod her to see if the biological father might agree to be tested for possible donor? If so, are there more secrets to be kept?
What is either parent wants to see the full medical record? The parents take the record to another doctor – who opens his mouth in an uncontrolled setting – “Hey, I never knew Ben had another dad?”
Oy vey.
This vignette illustrates the challenges faced by information learned collaterally. Alexander Pope was right. Sometimes a little learning is a dangerous thing.
Any genetic testing that identifies parental DNA or characteristics of same, and their relationship to the patient should come with this caveat as part of the consent:
“This test may or may not disclose genetic relationships between those directly involved with the patient or their family. This means that the test may prove that a subject of the test may or may not be biologically related to the patient. If you sign this agreement, you hereby give your permission and consent to have this data disclosed to all involved in the testing process.”
(READ this paragraph to them, to make sure they get it!)
I see no reasons to play games with this. If the “parents” are willing to do what is best for their child, then these games need to stop.
At least they will be forewarned of the result. Maybe this will bring the pot to boil before the test is administered. This at least keeps the physician out of that potentially volatile mixture.
DNA doesn’t lie. I see no reason for the physician to have to lie either. You have enough to deal with. An extra-marital affair was not/is not our fault; nor was it your fault that a patient got sick.
Oy vey, let the chips fall where they may.
Michael M. Rosenblatt, DPM
Clearly, the pediatrician’s primary duty is to the child. He needs to inform the mother in private and ask for permission to contact the real father. The real father may not even know he is the father of the child so that the next step, as well, could be delicate. Informing the non-father is not the pediatrician’s job. Informing the boy later is not the pediatrician’s job, either unless the boy once over age 18 requests the medical record.
The real challenge might happen if the biologic father is a candidate. How then to handle that might be a challenge but wisdom should allow ways to navigate that process. Say no more than necessary. Advocate for child.
The child is the patient. The information is just information.
What if the child should develop a problem during treatment that requires some biological input that only the father can provide. This is a possibility is it not? If at least an attempt isn’t made to locate that father, would that not put the treating doctors in another bind?
The question to me would then be how to disseminate the information. I agree with Dr. Rosenblatt completely. We cannot be hogtied regarding our care. Perhaps this was an ivf baby and they “forgot” to tell the providers? In any event, more medical information needs to be obtained, and all parties need to be brought into the conversation or truly informed consent cannot be obtained.
One way to do this would be to discuss this with the wife alone. Fine. Won’t the husband confronted by an infidelity feel betrayed again, and won’t this compromise the doctor’s credibility? I sure could. What about keeping a little “secret” with the woman. Secrets can only explode legally, and ethically, it is indefensible. The doctor did not have an indiscretion.
This is a situation that is perfectly suited for a team approach, and undoubtedly, this is the approach the child is being treated anyway. I think it would be OK (in my opinion) to call the mother in, present her with the evidence, inform her that the husband who is not the biological father but is actually raising the child and is the real father must be involved. I would give her say 24 hours or some very short period that would not affect the child’s treatment, and then would call a team and family conference and present the data non-judgmentally. I would also consult with legal. In my opinion, this is the only ethical thing to do. I didn’t have an indiscretion, and I will not be brought into one.
To be fair, if the woman feels that she cannot proceed with treatment under my code of ethics, I would give her recommendations of others who could treat the child, but they would have the records and would have to make their own decisions.
Sound fair?
sek
Read superb College of American Pathologists (CAP) magazine.
Total belief in lab results = belief in Santa Claus.
Lots of possible errors along the way.
Copy Dershowitz in von Bulow case.
Be a disbeliever. Always re-check.
I unfortunately have personal experience in this area. I agree the consent should cover this situation. First and foremost, is the patient’s right to know. This is for treatment but also if he would want to eventually seek out his biologic father. The present “father” may have underlying suspicion that this child is not his and may be hoping that this test answers his questions. The average person would not know what to do with these suspicions. I would not confront the wife without the husband because she has obviously covered it up this far and would not want her secret revealed. Any thought of covering this up, should be put under scrutiny with the realization that there is a high divorce rate, without even adding in the stress of the situation, or any other legal matters pertaining to this case the results may be eventually revealed. I would discuss with my risk management/ malpractice insurance carrier. Then, I would meet with both parents together. I would make sure no guns in room. As Chris Rock says the biggest lie a woman tells “It’s Yours!”. The husband has the right to know otherwise we’re complacent with the fraud.
Both parents were tested. And both are entitled to the results. You may not make assumptions favoring one spouse over another. They are equally entitled to the information.
What they elect to do with the information is up to them. You are violating patient autonomy when you fail to disclose information that may affect decision making by the family. The only conflict I see is the physician not wanting to be the bearer of bad news.
Physicians must have a voice in patient consents. Many hospitals provide “blanket” consents for various procedures that patients’ sign when they enter the hospital or surgical care center. I never used these. I operated at both hospitals and my own Medicare Certified ASC.
The hospitals had “blanket” consent forms for various DPM procedures. DPM’s do a surprisingly wide range of procedures. I always had the patient execute my own at my office prior to their being admitted to the hospital. I sometimes only saw the hospital consent form they signed after I reviewed lab tests before I stepped into the OR. Fortunately I never had to go to court to defend a lawsuit, but I often wondered “which” consent would dominate the arguments. Since I never had to face a jury, I don’t know.
I don’t care what form a hospital/surgical center uses. Neither should you. You should have your own, even if this involves bringing them to the hospital in your own briefcase. If your hospital uses digital records, you can go to the medical records department to have them scan in your own consent. If they refuse, have the patient/responsible adult sign it anyway and take the form back to your office. I was on staff at several hospitals. During those years, digital records were not being used. Had one refused, I would simply stop admitting patients to them.
Had the physician executed the correct and proper consent form over this confused paternity issue, the physician likely never would have been involved in these discussions, which is where you belong: outside.
Michael M. Rosenblatt, DPM
I agree that the genetic information gleaned from testing belongs to each parent individually, and that as legal parents, both parents are entitled to the results (and pertinent interpretation) of their child’s genetic testing.
On the other hand, the transplant candidate is traditionally NOT “entitled” to any details of potential donors’ genetic information, because that information belongs to the donor and the donor alone, and the donor may or may not decide to proceed with the donation after being presented with the results. For example, a family member may be persuaded to undergo testing, but later decide to withdraw consent for donation after finding out s/he was in fact an acceptable donor; in that scenario, the transplant recipient could simply be informed that “there was no match,” and familial relationships could be preserved.
So, the results of the parents’ tests do not EVER “belong” to the patient regardless of his age, unless each parent consents to the release.
Finally, if the stated intention of the screening was to determine whether one or both parents were potential donors, then the physician’s responsibility ends with delivering that interpretation. It is not the physician’s business to volunteer additional information in this situation.
If the physician were interested in identifying any ADDITIONAL potential donors for screening, then some additional questions might be presented to the parents at that point. If the situation has been accurately explained to the parents, each of them should understand that a biological parent has a good chance of being a match, and if they are not forthcoming with a name, then the physician can safely assume that such a person is not going to be available.
Joseph Mott, M.D., J.D.
I would confer with the mother in private. The husband may be aware of the situation, but for ten years he has been the child’s father. The mother will help the physician steer through this thorny situation.
But, Jeff: As an English major, and lifelong literature lover, I cringe whenever I hear “a little knowledge.” That isn’t what Pope wrote, learning isn’t exactly transferable to the term knowledge, and, unfortunately, this mistake is what the great majority of readers of articles today believe is correct (knowledge).
After sleeping on this post, there seems to be only one path that makes sense: Honesty. In this case, the oncologist has an obligation to the patient and her parents that are legally responsible for medical decisions made on their child’s behalf.
If I were in this uncomfortable situation, I would have a meeting (chaperone present) with the child’s mother and father, behind closed doors, and let them know the lab results without passing any judgement, maintaining focus on the child, and moving forward with the child’s care from there. Anything less than honesty would be detrimental to the child in the long run, and we all have to live with ourselves at the end of the day. 🙂
Eric
To Dr. Stecher:
I agree that the original quote from Alexander Pope is “A little learning is a dangerous thing” (as was correctly quoted in the opening of the blog. How it evolved over the years to “A little knowledge is a dangerous thing” is anyone’s guess. But, right or wrong – that’s how most people currently recognize the quote.