I had been meaning to resurrect this blog for awhile and in fact I had made it one of my New Years resolutions. Better late than never, I guess. For those that don't know me (probably most of you), I'm a doctor, specifically a neurologist (hence why many of my older blog posts are health care related). I went into neurology since I found it to be fascinating to deal with diseases of the nervous system which manifest in very interesting ways and can be challenge to diagnose and treat since there is still so much we don't know on how the nervous system works. However, the big downside is that we deal with a disproportionate number of patients with devastating and often untreatable and incurable illnesses that can lead to thorny ethical issues. I was recently faced with one such problem with a patient not too long ago. I initially thought I knew exactly how I would approach it, but after discussing this further with other medical colleagues who presented very different, legitimate points of view, I've been less sure. I thought I'd inaugurate the return of my blog by presenting this issue to all of you to get more points of view from a lay perspective. For reasons of patient confidentiality (for both legal reasons and admitted remote possibility that someone reading might be connected to the case), I'll present it in very general terms but the fundamental issues are all real.

I recently saw a homeless man in his 50's who carried a diagnosis of "schizophrenia" and was referred to me due to progressive problems in mental and motor function. His story is quite sad. Until about 10 years ago, he was a fully functional individual (had a high paying job, a wife and 2 kids) before he developed psychosis and severe mood swings. He lost his job and understandably, his wife divorced him and basically lived on the street. He has no other family except a father with whom is also estranged, though has sporadic contact. I had a pretty clear idea of what he likely had and confirmed this with a genetic test which came back positive for a disease that is incurable and hereditary (in digging deeper in his family history, his mother likely had the same condition). This means that each of his two kids have a 50% of developing the same disease and thus probability-wise, there is a 75% chance that at least one of them has it as well. Despite the patient's cognitive issues, he has enough mentation to understand his diagnosis and the hereditary nature of it. However, he is adamant that his family not be contacted about this.

Here are the issues. First of all, the diagnosis explains why he completely decompensated all those years ago and perhaps if his family were to understand this, it might help reconcile them. Secondly, as his two kids are at risk, it is very likely at least one of them will develop symptoms later in life and knowing their father's medical history would be crucial for them to get diagnosed quickly and correctly if that were to happen. They could also get tested and make life decisions based on the results (some patients, if diagnosed with the gene, would make the decision not to have kids). On the other hand, the knowledge of possibly having an incurable, neurodegenerative disease hanging over their heads is life-altering at the least if not psychologically devastating. In the end, the patient does not want his family contacted about his condition anyway so shouldn't his wishes be paramount anyway?

Here are my options at this point.

1. Abide by the patient's wishes. Despite his cognitive issues, he's never been deemed incompetent to make his own medical decisions. And even if he were, ethically, could I still really violate his privacy?

2. Get a psychiatry evaluation to determine his medical competency, which he would likely fail. At that point he would get a court appointed guardian who would basically go along with whatever I wanted. Even then, I'm not necessarily sure I would contact his family if I couldn't convince the patient to go along.

3. The backdoor approach. His father is his emergency contact. While I couldn't discuss his son's care with him without permission, I could discuss the situation generally and specifically in regards with the mother who I suspect had the same condition and bring it up in that way (the hereditary nature, possible risk to grandkids etc.) and the father would draw his own conclusions and could in turn contact the patient's ex-wife. However, I would be very uncomfortable with the family learning about this "second-hand" and not through a doctor.

I'm also open to any other thoughts. What would you do?