I didn’t know Joan, but something tells me she really doesn’t care now nor does it really even matter anymore. I do find it funny how we think people who have passed hang on to these kind of things that may have mattered while they were alive. Trust me, she’s not holding a grudge.

But my question was not really about legal rights as much as moral rights. Your post inspired me to check HIPAA. The legal rights seem pretty clear in this situation, but the moral rights do not. Even if he has a legal right, does a doctor have the moral right to disclose such personally identifiable medical information after death to the entire world?

I can understand a doctor sharing all medical information directly with the personal representative. The personal representative is entitled to that information, which she may need for a variety of purposes, including dealing with medical bills and insurance. She certainly also has the right and responsibility to share relevant information with family members who need access to their family medical history.

But does the physician really have a moral right to disclose the patient’s personal information to the world just because the personal representative’s consent gave him the legal right to do so? I just find this troubling. An analogous kind of reasoning would apply if the patient were in a long-term coma.

Given my limited understanding of Buddhism and the Buddhist belief in reincarnation, perhaps there’s not a great deal of difference between death and a coma.

Mary: Though my intent was to share the story of someone whose life appeared modest and uninspiring on the surface but which was in fact anything but and to give her credit publicly for being the person she was, after thinking about the points you raise in both your comments, I find myself agreeing with you and have removed all reference to her last name from my post and the comments. I think Joan would have consented, perhaps with some embarrassment, to having her full identity revealed, but as I never did ask her, I think you’re right that I’ve assumed too much. Patients shouldn’t have to specifically request their doctors not reveal private health information after their deaths. The moral obligation to keep private health information private even after a patient’s death existed long before HIPAA and I agree I was in error. Thank you for providing such important feedback.

Alex

However, I must say that I was a bit taken aback to learn that after my death my next-of-kin could give my personal physician permission to reveal my full name along with specific details of my medical history to the entire world, as you have done with your patient here.

I understand that people who die of uncertain causes automatically lose privacy rights after their death, because the law may need to inquire into circumstances, which can require revealing medical history records to the courts and possibly to the press. Obviously, this could happen to Michael Jackson, for example.

But imagine a different scenario for Michael Jackson’s death. Suppose he had been struck by lightning in circumstances suggesting no possible foul play or medical misbehavior. Suppose also that Michael Jackson had had a wonderful relationship with his personal physician, who wanted to share that moving story with the world, including some details of diseases he had had. In the absence of legal questions about cause of death, would anyone think that Michael Jackson’s next-of-kin had the right to give permission for such revelations to that personal physician after his death? I think most thinking people would say no.

Unlike Michael Jackson, your patient comes across as a modest and unassuming private person. She also comes across as someone who was reluctant to burden others by sharing the details of her medical complaints. She apparently died in circumstances that did not require a public legal inquiry into her medical circumstances. Should she have fewer legal rights than I think most thinking people would have accorded to Michael Jackson (in the absence of legal questions about cause of death.)

Perhaps her daughter and you both feel you knew her well enough to be sure that she would not have minded such revelations, and it sounds like your relationship with her was such that she might have given such permission herself, if it had been possible for you to consult her after her death. And perhaps, in some afterlife somewhere, she is reading this post and beatifically radiating joy at this moving tribute.

In the absence of absolute certainty as to her wishes, however, would it not have been better to use a pseudonym in your public post?

I believe my 91-year old grandmother is one such woman. I wish she had a GP or gerontologist like you, who could bear appreciative witness to her long, painful journey through the health care system. When my grandmother has bad days, and they are constant now, she isolates herself because “when she’s in a bad mood [due to tremendous chronic pain] she doesn’t want to bother others with it.” She volunteers no negative information unless pointedly asked. We all know a select few individuals like this.

I would imagine Joan benefited enormously from her warm relationship with you, in ways that are impossible to quantify but that we all know exist.

Take Care,
Jill

Jill’s current post: Romper Bomper Stomper Boo.