A patient is diagnosed with a disease. Its genetic so there is a good chance the condition will manifest in at least one of his five children or one of his parents(who are both still alive). I cant divulge exactly which disease this patient had but lets pretend its Huntingdons a very nasty, incurable and degenerative neurological disorder. Now here is the kicker, he doesnt want anyone to know, he doesnt want his wife, his parents, his children to know and thus he is preventing any of them being screened. Our obligation is to the patient, and he can rely on confidentiality in this case. Our legal obligation would take priority if this was a very infectious bacterial infection, we would have to trace everyone who came in contact with the patient and screen them. However this is not infectious, the patients family already either have it or they dont the dice have been thrown. So we say nothing.
Now what if the patients son was in RAF Squadron, flying planes with high yeild payloads for a living and he didnt realise he had a condition which severely impairs motor function as a primary symptom. Do we not have an obligation to the greater good then to inform the patients son?
I understand the importance of confidentiality. I also understand that this patient had just recieved the worst news of his life and probably wanted to prevent any of his family worrying about him, he may even have been clear headed enough to realise that if his children didnt know they couldnt get tested and those those of them who surely had this condition could be spared feeling what he was feeling now. Its information that you cant take back, once you tell someone they are going to die in one of the most horrific ways imaginable(and there is no way to sugar coat it) you cant untell them. His children were only young, whilst the condition could strike at any time maybe he was just trying to buy them a few more years of innocence?
In the interests of balance(I have been told I always assume the best in people) maybe he was just a coward who didnt want to face his own fate and thought that by hiding it he could avoid it no matter what the cost to those around him.
What would you do in this situation? would you respect the patients right to confidentiality? or would you inform his family?
Now what if the patients son was in RAF Squadron, flying planes with high yeild payloads for a living and he didnt realise he had a condition which severely impairs motor function as a primary symptom. Do we not have an obligation to the greater good then to inform the patients son?
I understand the importance of confidentiality. I also understand that this patient had just recieved the worst news of his life and probably wanted to prevent any of his family worrying about him, he may even have been clear headed enough to realise that if his children didnt know they couldnt get tested and those those of them who surely had this condition could be spared feeling what he was feeling now. Its information that you cant take back, once you tell someone they are going to die in one of the most horrific ways imaginable(and there is no way to sugar coat it) you cant untell them. His children were only young, whilst the condition could strike at any time maybe he was just trying to buy them a few more years of innocence?
In the interests of balance(I have been told I always assume the best in people) maybe he was just a coward who didnt want to face his own fate and thought that by hiding it he could avoid it no matter what the cost to those around him.
What would you do in this situation? would you respect the patients right to confidentiality? or would you inform his family?
6 comments:
that is a hard call to make, and the feeling of helplessness that the medical staff must face under those circumstances even more difficult. I personally would want them to face facts, have the screening and deal with the knowledge that it provides. Better to be certain of the possibilities than to fear the worst.
I agree, I am now and have always been a pragmatist. Each family member either has the condition or not. If they do the knowledge of its existence would allow them to identify warning signs earlier and thus remove themselves from any situation where they could be a threat to themselves or others. Added to which not knowing isnt going to change the situation it just masks it in fog, which I would argue makes it a lot worse.
Fortunately there are a strict set of guidelines in place for medical staff so they can always tell themselves "I followed the rules" its far from being able to say "I did the right thing" but its enough to enable you to keep coming in to work.
Yes, but it's not as if disclosure is urgent. I know you could construct "what-if" scenarios like a pilot son, but in practice the thing could be brooded over for many months without a sense of panic needing to creep in. If I were the doctor, I would urge the patient to tell some professional with whom he could discuss it over time - e.g. counsellor or hospital chaplain; someone who would not take the medical view as priority, but be respectful of the patient's point of view and motives. With the right kind of listener, I feel that the patient could come to the most holistic (good-for-everyone) course of action.
This would relieve the doctor's conscience and prevent a conflict of interests.
I think the answer lies in what Sage and you have concluded from your own pragmatism. Patient is preventing someone from reaching their own conclusions and making their own choices and denying them of their fundamental right to know of something that affects them. In my previous life, I was often sent to deliver `bad news` and the temptation to water it down to make it easier to swallow was great. But ultimately it was me who wanted it easy, whilst not wanting to inflict pain on a fellow human being, but I had no right to do that. Painful as it often was, I delivered the full facts as I knew them and, thereafter, tried to support and guide the recipient to reach their own solution based on truth.
Hogday - Do you think that opinion is part of an attitude we share in front line public services?(police, medical, etc). I know in my current life as a student nurse and my past life in the forces I seem to apply the attitude of "get the job done quickly and cleanly". I feel this attitude protects me in some cases from feeling helpless or out of control. I am just wondering if its a necessary defense mechanism in this kind of work.
Vincent - You are probably right, I think sometimes in medicine we turn everything into an emergency because we know how to deal with emergencies, the solution is immediate and most of us dont have the patience or nerves to consider the far long term prospects. However in this case any one of the patients family members could effectively be a walking time bomb.
I certainly hope that should the worst happen and I receive a bad diagnosis at sometime in my life, or have a police officer knocking on my door with bad news they wont beat around the bush. I think it just how my mind works.
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