I agree with you that ANY and ALL information should be noted and cross-referenced in the records and even if pertinent, by the proper authorities.  In this case though the question was whether or not to tell father/husband and daughter of findings that, after the fact, had no bearing—in this instance that information was not pertinent.  However I think it may be responsible to put the question of ethics directly to those involved in the form, at least of a waiver, as to whether or not or what kind of information would they like revealed and what kinds they would prefer to have withheld.

hulitoons - 03 August 2008 03:42 AM

Any tissue type not your own is considered alien by your body even if it was from an identical twin.  But this is also why donors are or have not in the past been identified to the recipient.  Medications must be taken for the rest of the recipient’s life to prevent rejection.

Tissue typing is much more complex than, for example, blood typing.  It’s not an all-or-nothing thing.  And the fact is, someone who shares more genes with you is likely to provide a better tissue match than someone who does not.

The second best donor tissue to your own tissue is, in fact, tissue from an identical twin.  Tissue typing ranks just below using tissue from a relative.  Reference.

So in this instance, the guy thinks he has a tissue typed match from a blood relative, when in fact, he only has a tissue typed match.

Joe, you are one of those patients who should always be given even facts that are not necessarily pertinent because you wish to know even the composition of the soil upon which you stand.  You appear to believe, or need to believe that you have more control over your life and all in it than you may actually have.

Excuse me?  Do you know me?

This attack is as valid as me accusing you of being a fascist who presumes to know what is best for someone else to the point of withholding information from a patient that may affect the outcome of the surgery.

Could the girl be adopted and the father did not want to admit it?

Joe, it was not my intention to insult you at all, but based upon your approach to other threads it would appear by just ‘knowing’ you through readings (which is often not what a person is like in person) that you enjoy a good debate and seem to lean toward a more cynical viewpoint.  Based on my understanding, at least the personality you portray in your writings, I would view you as a person who has need of materials both relevant and [probably] yes, irrelevant to a particular event.  You appear to have a strong need to see the mathematical fabric weave as well as the entire picture. 

I see not a thing wrong with that actually except that knowing other folks who appear similar in nature in real life, not just here on the internet, I’ve also noted a kind of sadness in their ability to control what seem to be the logical equations in life, particularly their own. 

Having said this though, I also note, even in myself, that I frequently give up at the third try over a hurdle while you will not, even if it means hammering against it perhaps until injury, (at which time I’m probably the one who would first run to your aid, even when you would likely flail against my assistance).  I am at the other extreme of the spectrum both of us share in life.  I need to see the entire weave on occasion, but not necessarily all the time.  I do not think either of us are wrong from our particular view, but neither are we right for those standing in the middle. 

In this, I do not believe either of us would probably be good candidates to an ethics committee at all.  I will admit that I would not want you as my doctor either, and I say this in kindness because I do believe there are others who would value you quite highly.

As to tissuing, I believe that if I had to decide how to address the issue, and knowing that even a blood relative may not be a suitable match, I would most likely at least lay that point to both daughter and father and suggest typing another relative (if one is available) before delivering yet more difficult news. 

X, I think that if the daughter had been adopted, the father should have been confronted first, and it would then be his decision to tell or not tell.  It would seem to me that an adult the daughter, if adopted, certainly has the right to know, but that information, since the father is still alive, should really come from him.

JoeDaJuggler - 02 August 2008 08:19 PM

The “ignorance is bliss” argument has never worked for me.  If that were true, why not just drink or drug yourself into oblivion all the time?

I will drink to that ... ...

I would want to be told.

oppie, told that your child was not your own, or that you were going to die?

I am very curious; how would you feel and what would you do if you were told your child was not your own?

Or, what would you do if you were told you had a fatal illness…..not just from your present fairly healthy perspective, but think about it being an actuality…that you would not live long enough to see next spring or summer, that you would not live long enough to see your child grow, that there were people who love and need you now and you were going to leave them behind to deal with life without you.  Or perhaps that there would never be enough time to repair damage that had occurred ...? 

It’s relatively easy to say ‘I want to know’ when you’re pretty sure at the moment that this event would ever even occur for you.  Wrapping your head around its reality is very different.

knowing some doctors if they decided to tell they would put the nurse up to tell

I think X that it truly does cause a difficult dilemma for sure.  BUT, if the doctor believes there is a chance for survival, then to express the need to begin methods to save the patient does require telling so that steps are taken in a timely manner. 

I am reminded of two young men that died last year…yes, MUCH younger than me, but who were very close to my heart.  One had been dying at the age of 32 of leukaemia.  He spent many MANY months of treatment prior to it really becoming fatal.  During a couple of the treatments, he was put into a medical coma for a span of two weeks.  Each week he went in for blood tests and at times the tests showed improvement over a period of several months and then a dramatic down turn.  He went in for more treatment which left him in pain, weak, and unable to eat.

For a period of two years he lived being unable to live at all.  Most of the time even walking was an extreme effort.  He couldn’t play with his dog or give the kind of love he wanted to give to his girlfriend. 

One week before his death, a huge party reception was given to him which included a wedding to his girlfriend.  He was brought to a comfortable chair while the house filed with more than a hundred people.  There were little paper signs all over the house (his parent’s) with little sayings that basically said ‘today is the most important day of life’ etc.

He could barely speak and I watched the pup he loved more than life playing out in the grand yard believing that her master would share yet many days with her. 

————————

The second man was in his early 40s and was my x-husband, younger than me by over 15 years.  At the time he was going in for a Pet Scan, I also was going in for one.  Neither of us was aware of the other’s health issues at the time.  My Pet Scan did not ‘light’ up’.....his cracked like fireworks.

Joe was an individual with severe learning disabilities.  He was not able to communicate well or understand complex ideas.  He did understand death and he didn’t want to die.  In fact, (I was informed of this by his friend) when told he jumped up and down like a child having a tamtrum crying ‘I don’t want to die!  I don’t want to die!“ 

I received a call of gentle sobs and admissions of love and needing to be loved, of needing to be saved, to be reassured.  With all of this he said and laughed, ‘I didn’t even feel sick and I still don’t feel sick!‘  To him this meant something that did not equate to having a lethal disease.  He had only begun treatment though. 

I kept waiting for the phone call and was thankful that I didn’t have to bear this terror even though I did bt proxy.  Months went by and I wondered and waited and then, 10 months later I received the phone call at midnight.  Erik and I were already in bed. 

———————————-

hulitoons - 04 August 2008 04:42 AM

Joe, it was not my intention to insult you at all, but based upon your approach to other threads it would appear by just ‘knowing’ you through readings (which is often not what a person is like in person) that you enjoy a good debate and seem to lean toward a more cynical viewpoint.  Based on my understanding, at least the personality you portray in your writings, I would view you as a person who has need of materials both relevant and [probably] yes, irrelevant to a particular event.  You appear to have a strong need to see the mathematical fabric weave as well as the entire picture. 

I see not a thing wrong with that actually except that knowing other folks who appear similar in nature in real life, not just here on the internet, I’ve also noted a kind of sadness in their ability to control what seem to be the logical equations in life, particularly their own. 

Having said this though, I also note, even in myself, that I frequently give up at the third try over a hurdle while you will not, even if it means hammering against it perhaps until injury, (at which time I’m probably the one who would first run to your aid, even when you would likely flail against my assistance).  I am at the other extreme of the spectrum both of us share in life.  I need to see the entire weave on occasion, but not necessarily all the time.  I do not think either of us are wrong from our particular view, but neither are we right for those standing in the middle. 

In this, I do not believe either of us would probably be good candidates to an ethics committee at all.  I will admit that I would not want you as my doctor either, and I say this in kindness because I do believe there are others who would value you quite highly.

This is incredibly presumptuous and patronizing—and irrelevant to the discussion anyway.

Ethics is a branch of logic (itself a part of philosophy).

Back to the issue:  another point that I don’t believe has been raised is the legal ownership of your medical records and test results.  Everything in your medical record is yours.  You can request a copy of it.

Every x-ray and blood test is yours.  For most people, the results aren’t so meaningful, and that’s why traditionally these things were put into your file and the doctor (or whoever) would explain the results to you.

In this situation, not disclosing the results which are placed into the person’s file seems not only unethical but possibly illegal.

As I pointed out, the paternity of the girl does have some small bearing on the probability of organ rejection problems, so it really should be disclosed to them as part of their informed consent.

If the information is recorded in their medical histories, it should be disclosed to them.  They can certainly request a copy of their histories including the test results.  Whether or not they understand them is another issue.  What if their records are released to another doctor (such as a primary care physician) and that doctor sees the results?  Is he required to keep mum about it as well?  Seems to me the best solution is immediate disclosure—obviously something that requires tact and sympathy.  What if, for example, the girl later sees a psychologist and has her medical records released to him?

What if the non-biological father has other medical conditions that might be inheritable?  By not disclosing the real facts,  you’re allowing the girl (and possibly other health care providers?) to continue to think that she may have a predisposition to those conditions.

Another issue to consider:  if they withhold the information and if the guy ends up with problems because the organ is rejected, whether or not the daughter’s paternity was actually a factor, there is a legal case for malpractice since it could have been a factor.  Even if this is “just” a legal matter, it has ethical implications.  Whatever resources might go to defending or settling even an unjustified complaint will hurt the hospital’s ability to help other patients (even if by nothing more than higher fees needed to cover increased insurance premiums).

So the argument in favor of withholding the information is that the information is irrelevant to the surgery (which I’ve shown it’s not—at least not certainly), and the disclosure might cause mental suffering for both of them. 

And I’ve shown that non-disclosure might also cause suffering in the man, the girl, other medical professionals and even other patients (indirectly).  Also, I don’t see how you can write something into someone’s medical history or include test results in it, but withhold that information from the patient.

Unfortunely there are several things in medicine that are left unsaid.  Whether it is known to the family knows about the genetic situation may never be comented on unless there is a major lawsuit which may never happen.  A lawsuit would happen if the patient or the family suspects malpractice or a mistake of some sort.  Hospitals (in my limited experience) are very bad in admitting mistakes, if they find out about them.  Mistakes are made by doctors and nurses that are never found out.  Long term care is better about admitting that something happened.  So unless legal stuff happens, in real life, these two may never know. Few people ask for a complete record of their medical files