A Difficult Meeting
First, a little background. I have not had a formal course in medical ethics and law, so I’m trying to pick it up from various attendings on my rotations. One basic of medical ethics is privacy. Without a patient’s permission, doctors cannot disclose information regarding their medical status to others, including family members, provided that the patient is a competent adult. This rule becomes clouded with unconscious patients. If a family needs to make life-or-death decisions for an unconscious patient (for example, the decision to take a patient off life support), it is important for the family to have all the available information. In this situation, as I understand it, it is permissible for the doctor to share information about the patient’s medical conditions with the family, in order for them to make an informed decision.
A few days ago, a patient on the general medical floor coded, was intubated and stabilized, and subsequently transferred to my ICU team. The patient had AIDS and cryptococcal meningitis and was non-adherent with medication regimens, and had suffered a respiratory arrest. After the arrest, the patient had fixed and dilated pupils, no withdrawal from pain, no purposeful movement, and areflexia, and was diagnosed with clinical brain death. An EEG was ordered. However, the EEG findings did not meet criteria for brain death, although there was very little electrical activity in the patient’s brain.
The chances of this patient recovering were essentially zero, and my attending called a family meeting to discuss the next step. A few matters were anticipated to complicate the meeting. The patient’s family was Spanish-speaking, and so an interpreter was called. Also, although the patient was a male, it was unclear what gender the patient lived as on a daily basis, and we wanted to respect the patient and the family by referring to the patient with the most appropriate him/her pronouns. Most importantly, the family did not know about the patient’s HIV status.
Before the meeting, my attending explained to me the need for family to have all the relevant information in order to make the decision about taking the patient off the ventilator. However, he said that he’d “feel out” their feelings on the decision, and if it didn’t seem necessary to reveal the HIV+ status, then he wouldn’t.
It was evident from the first minute of the meeting that the family thought it was best to take the patient off the ventilator. This made the discussion easier from the start. However, one of the first statements made by one of the brothers was that they wanted to donate the patient’s organs, particularly the heart. Everyone on the medical team knew that an HIV patient’s organs would not be accepted for donation. But, this was an extremely generous suggestion, and so my attending gently explained that although he’d look into the possibility of organ donation, some patients were ineligible for various reasons. He did not reveal the HIV status at that point.
Minutes later, a sister asked a very intelligent question. She asked how a regular person could get this strange type of meningitis. My attending explained that the patient’s immune system was not as strong as other people’s. He did not reveal the HIV status at that point.
Towards the end of the meeting, after a few minutes of silence, one of the siblings spoke up and said, “I heard that there was HIV.” At that point, my attending confirmed the patient’s HIV positive status and explained its contribution to the situation. The family did not seem shocked or more upset than they already were.
As the meeting closed with a prayer from the hospital chaplain, the family seemed at peace with their decision to stop the ventilator, and the medical team was satisfied with the outcome. A few hours later, the patient was extubated, and died within ten minutes.
This scenario was not an easy one, and not clear-cut in any way. I thought my attending did a superb job in discussions with the family, both in his respect for the patient’s privacy and the family’s need to be as informed as possible. I was relieved that the HIV issue had been broached by the family; it seemed more appropriate to tell them, and I was glad that the family understood all the conditions that led to the patient’s death.
Medical ethics is not simple. There is no tell-all handbook which, after reading, makes every decision clear and easy. As medical students, the best way to learn how to handle these difficult and ethically-complicated situations is to watch and listen to doctors we respect. In time, the situations will be ours to deal with, and we need to be ready.
Great perspective article on how to handle a complicated medical ethics situation..
Posted by: Raveen | Aug 22, 2008 11:12:59 AM
What an amazing experience, Anna!
Consent, privacy, power of medical decisions are all very important issues that we will all face, no matter which fields we end up in. Unfortunately, I think that the attention paid to ethical decision-making skills is little more than a side note in medical education. You point out that "there is no tell-all handbook which, after reading, makes every decision clear and easy. As medical students, the best way to learn how to handle these difficult and ethically-complicated situations is to watch and listen to doctors we respect."
I agree with both statements, but am not content with an approach that we students wait and see what others do before we learn. I think you were very lucky with this case. There is very good evidence that even 2 hours of formal training in case-based reasoning can help medical professionals feel prepared for difficult situations on the wards. And for matters of 'everyday ethics' (important decisions that occur outside of clear emotional dilemmas), a longer term of mentor-initiated reinforcement throughout training could be useful.
Reading your experiences was useful to me; your article reads like a case study. I bet that every medical school could stand to benefit from increased practical teaching by inserting material like this into classes and clerkships. The best type of ethical training is in the moment, but the runner-up doesn't have to be dry lectures about autonomy and beneficence - gather some classmates and talk about your struggles (real or imagined) on the wards. Doing that makes medicine more meaningful and interesting.
Thanks for sharing this.
Posted by: thomas | Aug 23, 2008 9:16:06 PM
Great way to handle a difficult situation. As a general rule I often think and view people as having an "emotional bank account",you always need to be careful how much of an emotional withdrawal you make. Then you need to make some emotional deposits so that they feel whole again.
Posted by: John Bott | Aug 26, 2008 1:23:08 PM
Having been a Respiratory Therapist and working on a Code Team..I can tell you I have had my share of "critical" moments. It would be so helpful if when a patient is checked into a hospital, especially in a critical situation, there be a "Medical Directive" given to the attendant before the need arises. I love the Living Will for just this reason. It outlines all requests and a copy should be given to the attendant.
I agree, this was a lucky scenario...some families may not have taken the "HIV" issue so well. However, I agree it is good to inform the family of all issues, if one can "feel out" the people involved. This of course, comes from experience and working with these issues and just can't be found in a book. I would like to see more inservices with staff and perhaps go over some possible "scenarios" either in training or video. This might help to prepare others mentally for this difficult task. I think this situation was handled as close to perfect, given the circumstances. Kudos to your attendant!
Posted by: AnnieB | Aug 26, 2008 6:32:04 PM
I have only one word to describe what your attending did: MASTERFUL! And you're right when you say ethics training should be more emphasized all throughout medical school and also in practical ways.
I have learnt a lot from this case and as my responsibility towards patients have recently increased, i hope to be up to the task by listening more as more experienced doctors handle the various thorny issues that confront medical officers. Thanks Anna!
Posted by: AJ | Aug 27, 2008 8:51:59 AM
Thank you for sharing such a good experience with everyone.
Posted by: Manasa Musunuri | Aug 27, 2008 9:26:12 AM
I love this article Anna! A very very very good example of medical ethics and what to do in real life.
Posted by: Rina | Aug 27, 2008 9:39:30 AM
This is a great example of medical ethics. Please allow me to put this example on our department's forum.
Dep. of Family medicine and Hospice
Chiayi Christian Hospital, Republic of Taiwan
Posted by: Bebe Yu (Taiwan) | Aug 27, 2008 10:49:56 AM
I really appreciate this article.It really mean a lot to me understanding how to approach medical issues and also managing medical ethics. there is no end to learning in this field. Thank you
Posted by: olusoji | Aug 27, 2008 1:22:37 PM
I really enjoyed reading this article , I mean the way your team handled this situation .
I think it's not as simple as that in all the situations but as u previously mentioned we can learn more by watching doctors who are more experienced than us
thanks for sharing your experience
Posted by: Shayma N. | Aug 27, 2008 1:35:31 PM
Your attending physician did a perfect job of following the HIPPA and Privacy ACT protocols. As a Registered Health Information Technician (RHIT), I am credentialed in the release of Protected Health Information. Under federal law and agency regulations (CMS), it is unlawful to disclose HIV+ status to any unauthorized party. Only direct care personnel are permitted to know while the patient is in their scope of care.
Your attending is a very smart person and has an excellent bedside manner as seen by his willingness to talk to his patient's family with a listening ear and a well timed clear responses throughout this situation.
With the prevalence of HIV today, it is unwise to presume homosexual etiology.
Posted by: Ron Strraley, RHIT | Aug 27, 2008 5:30:00 PM
there are many things we study in medical school but there are more important things we can never get from our books. That is why being a doctor is different from other professions. Our medical knowledge doesnt adequately prepare us to meet the real life scenarios that we encounter daily. That is why every opportunity to witness these situations should always be a learning experience for every student. I have always wished that there will be a medical subject that would deal with situations like this (although medical ethics may qualify but there are other scenes we have to deal with like doctor to doctor relations, how to deal with other health providers etc.).
Posted by: Paul Francia | Aug 28, 2008 3:12:50 AM
This really is a wonderful thing you shared.I am a final year student of MBBS in Medical College Kolkata..I hope i too may be able to tactfully deal with situations as critical as this.
I had just one querry, had the family not themselves asked of the HIV status, would you have concealed this fact, or later stated it as the reason for non-acceptance of his organs for transplantation?
Posted by: Anasua Deb | Aug 28, 2008 6:09:47 AM
nice article , really...
Posted by: khaled Salah Ahmed | Aug 28, 2008 7:43:57 AM
I agree with you,no handbook can give you such one on one hands on approach to medical ethics i believe the doctor acted in a very professional yet human way.it is not always easy to break bad news to a family.you had a very good learning experience thank you for sharing.
Posted by: Gladys | Aug 28, 2008 8:41:17 AM
Hi Anna , I think your attending did a great job in a delicate situation . We do study medical ethics at my school but again when & how to apply them is always controversial. A great article and by the way , I'm a fan of your articles.
Posted by: Hend | Aug 28, 2008 3:12:16 PM
Very nice... thank you anna..
Posted by: rully | Aug 28, 2008 5:42:46 PM
Very skillful and respectable approach. Thank you and wish you the very best for forth cominmg days.
Posted by: Dr. Bikram | Aug 29, 2008 1:51:18 AM
that was really a great way of handling the situation. all the best
Posted by: cindy | Aug 29, 2008 6:57:55 AM
You have my full respect with this case and I truly believe your attending made an appropriate decision. I also support your point of view that, at your current academic status, to observe the situation and learn from others' experiences in how to deal with the case. No one can ever say he/she is an expert in situation like this and we are learning as physicians. Thank you for sharing the experience and allow us all learn and be reminded how difficult to delivery the information to families in such stressful situations while respecting the patient's privacy. Great job and you deserve an honor for the rotation.
Posted by: Henry | Aug 29, 2008 7:08:43 AM
It was a very complicated case if we look from the angle of humaity.Bt you showed the right way to overcome that.you deserve my faternal respect.
Posted by: Shrayan Pal | Aug 30, 2008 7:44:21 AM
thanks for sharing this case study with us, i think as you mentioned earlier that it was important to emphasize on the medical ethics and patient's privacy in our medical learning and i believe that it is important to learn this from our doctor who are experience in dealing with those situation
Posted by: mona | Aug 31, 2008 7:20:59 PM
thanks for sharing us your experiments.
once it happenned to me that i told an endstage patient's family that their son will be fine . i did not want to tell them a lie but at that time i just wanted to stop them crying and unfortunately i did not have enough experience to know how a doctor can say bad news without covering the truth.I pray for you to become a doctor who realy knows the difference between medical ethics and morality and apply all the aspects of medical ethics in her job.
Posted by: honeyeh | Sep 1, 2008 11:31:00 AM
the attendent handled that situation beautifully and the fact that the family approached the subject of HIV was an added bonus.
Posted by: Sloane | Sep 1, 2008 3:18:38 PM
Let me take this opportunity to start a discussion of "Ethics and HIV". I have been writing on this topic for about five months now, and hopefully it will be published. My argument is as follows : Should we continue to allow people to have a choice in disclosing their status or not? I think the time has finally arrived. Policy makers need to consider mandatory HIV testing for each patient seeking medical help, especially in the public sector. We have to confront this and deal with it for the better of the future. feel free to write me back?
Posted by: mbulelo | Sep 12, 2008 6:26:30 AM
The comments to this entry are closed.