Sunday, April 12, 2015

After the error: Disclosure?

The following letter was included in the "The Ethicists" section of the New York Times Magazine:

I am a pediatric intensive-care physician. Recently, a colleague of mine, a very good doctor, was taking care of an extremely sick child who was expected to survive at the time of admission but who died. The institution conducted a root-cause analysis (R.C.A.), which found that the medical team made mistakes in diagnosis that led to inappropriate treatment and eventual death. The leader of the team resigned. I feel guilty: I was close to the family and took care of the child several times; the mother trusted us. After the R.C.A., I thought our institution had the obligation to tell her the results. I want to tell the family. I think they will pursue litigation if they get the results of the R.C.A. I would sue my hospital as well if I found out they made a mistake and my child died, at least in part because they were not forthright. I think whenever an R.C.A. is conducted, the results, positive or negative, should be shared with the family. Many of my colleagues think a physician’s ethical obligations to a child end when the child dies. I argue that this means that whenever there is a bad, nonfatal outcome because of medical error, logic would mean that the physician should hope for death in order for self-preservation. I am sure that I am conflating many pillars of ethics. I want to advocate for my patient even when she has died. NAME WITHHELD

There were several thoughtful responses from readers.  I thought these four caught the divergence of opinion nicely:

The first

I am a pediatric blood and marrow transplant physician, and am involved in safety and quality improvement, including participation in RCA. The letter writer raises two related but separate ethical questions: should the hospital disclose the results of the RCA, and if the hospital does not, should the writer do so.

The hospital clearly has an ethical obligation to disclose relevant information from the RCA to the family, even if that results in a lawsuit. The death of the child does not end the obligation. Several commenters worry that disclosing the information may further distress the family. However, it is possible to let the family know there is more information in a compassionate way that allows them to decide how much detail they want to hear.

The second question is less a medical ethics question than one of whistleblower ethics. The letter writer is ethically obligated to advocate within the hospital for disclosure. If it is clear that isn't going to happen, she or he needs to weigh the harm from keeping the secret versus the harm caused by disclosure, including harm to the hospital, the RCA process, and to himself or herself. We don't have enough information to judge (details of the mistake and the likelihood of a repetition are particularly important), but should keep in mind that sometimes the result of whistleblower ethical analysis is that disclosure by the whistleblower would be praiseworthy, but not ethically required.

The second

1. No amount of money will ever bring that child back to life. However, the family many incurred a large amount of out-of-pocket costs, and certainly any such costs should be ZERO.
2. There is simply not enough information contained here to make ANY ethical evaluation. What kind of mistakes? Honest mistakes, Careless mistakes, stupid mistakes, gross negligence, failure to follow established protocol, or what? All this has great bearing on what is the appropriate course of action.
3. I am personally very much in agreement with the concept, that forcing disclosure, will result in far fewer RCAs being conducted, and therefore many fewer lessons learned. LEARNING LESSONS for the future is far and away the most important aspect of any RCA.
4. Team leader resigned? Assume that person is an MD, and that they will rather effortlessly find other work. Hard to imagine that the former-team-lead won't be haunted by this experience for the rest of their life. And probably several other people on the 'team' who might have been in a position to alter the outcome.

The third

I wonder if the physician would feel the same obligation if he or she did not know the parents personally? The hospital should tell the parents the results of the RCA, explaining "this is what we're going to do differently from now on". It might actually help ease the parents' grief if they could know that some positive change was going to come out of their child's death.

The fourth

Medical error is now, according to IOM, our third leading cause of death behind cardiac events and cancer, and responsible for 400,000 deaths a year. A patient safety movement, led by Marty Makary and Peter Pronovost of Hopkins and Atul Gawande of Harvard, has gained adherents, and made some hospitals safer, moving toward teamwork, standardization, and greater safety, but unable to reach the laggards in hospital administration and daily practice. Administrators proliferate; staff is cut; contract emergency department personnel staff 65% of our EDs; device companies offer lucrative incentives; hospitals merge, build, and market themselves like toothpaste. Some hospitals seem to have dropped the weekly morbidity and mortality conference, always confidential. Patients and families are often kept in the dark. This physician may wish to find other employment before s/he talks to the family about the RCA and its results. The hospital culture in which he works will bring the hammer down if s/he remains.


Melissa Clarkson said...

I can offer the perspective of a family member whose father died after a serious medical error.

Patients and families expect that physicians and hospital representatives will be honest and share relevant information, both during care and after death.

Violation of this expectation creates an extraordinary amount of hurt and anger. Once patients/families realize that information is being concealed, or we are being told less-than-honest stories, we begin to wonder what else you have lied to us about. What else have you covered up? Is there any reason at all to trust you to care for me or my family member? Why did we ever trust you in the first place?

And for some of us, we take on the burden of pursuing a lawsuit — not only so that we can get the information our family needs for closure, but because we believe that no other patient should have to suffer the same mistakes. If you cannot be honest with us about the mistakes, you are not being honest with yourselves about the mistakes. And a lawsuit is our only way to ensure that you are aware of what happened.

My family has learned a great deal of information by filing a lawsuit. Some of it shocking. Some of it maddening. But all of it necessary for us to move toward closure. I hope we get there someday. Right now we are a bit more than a year into the lawsuit.

And I believe that ultimately this lawsuit is a good thing for the hospital, because I am certain that the depositions revealed problems that the hospital did not know about. Whether they act on those problems is, of course, up to them.

I am writing this on April 13, 2015. It has now been three years and two days since my father’s death. Our family could have had closure within a few months. It would have been best for both parties.

Paul Levy said...

Thank you, Melissa.

Anonymous said...

Everything that Melissa said. A good part of the reason there is such a mistrust of doctors is the administration/risk management/legal coverups, lies, etc. I would vote for criminal prosecution and financial issues from bigwigs down to the perps. Once you rip their throats like they did harmed patients, that is sadly the only way for it to stop.

Carole said...

It's always sad and hurtful when a family member shares their loved ones harmed and death experience with the medical world, and the only ones that respond back with understanding and compassion are those who have been harmed as well. You must know that it's not a matter of IF this is going to happen to you or a family member, it's a matter of WHEN. When it does remember you not being able to express a kind or considerate word. The silence speaks volumes. No disrespect, just my honest to goodness truth and observation.