Monday, June 30, 2008

LIVE GHOSTS IN THE ROOM

MITSS Support Team Member and Doctoral Student in Psychology, Erin O'Donnell, shares some reflections regarding her godson's hospitalization. Erin chronicles a very common problem with seemingly routine healthcare communication -- one that needs to be addressed in our quest for true patient-centered care:

On Wednesday morning, my 4 month old godson received a heart transplant in another state. Naturally, this is a big moment and gift beyond words. There is so much that can be said about the magic and miracle of organ donation; the amazing donor families, the science and the great treatment teams. However, I would like to comment on the something else.

Today, my friend, my godson’s mom, called me and said, “People say stupid things sometimes.” She went on to tell me about how the person she thinks was the anesthesiologist (the doctor didn’t adequately identify her role) introduced her name to my friend when entering her son’s room in the Cardiac Intensive Care Unit. The doctor then began talking to the other surgeon in the room as if my friend, the mother, were not in the room. This conversation included saying, “Most transplant babies are off the ventilator after 2 days.” Everyone in the room knew that this was 4 days after the transplant. It was an insensitive comment to make in front of the mother in that manner. The part that my friend found most rude was that the comment could wait until they left the room, since it was information all parties present already knew. When I expressed my irritation with the fact that the treatment team was talking as if she weren’t in the room, instead of integrating her into the team, my friend said that such discussions happen ALL THE TIME! How many times in our lives do people talk about us or our loved ones in front of us and pretend as if we don’t exist in the room? Is this a strange phenomenon that has become commonplace in the healthcare setting? How should a patient or family member confront such behavior without being seen as a problem patient? How did this kind of behavior originate in the first place? I wonder if it started as some sort of communication shortcut.

I do not believe either of the providers in the room were intentionally insensitive nor do I believe that they are callous people. This is a more widespread problem. It seems there are great barriers to overcome when discussing the importance of integrating the patient and family in their own treatment decisions, particularly when there are still providers that “forget” that they even exist at all.

Erin O'Donnell
MITSS Support Team Member

5 comments:

  1. I think that many physicians (and nurses and other health care professionals as well) often are so focused on the immediate problem that everyone else in the room becomes more or less invisible.

    I think this is probably exacerbated by their technical knowledge and language, which tends to isolate them even further.

    Sometimes, too, they're just in a hurry and don't want to have to slow down and explain things to a layperson.

    Most of the time I think it's unintentional, although I suspect for plenty of doctors there might be a touch of impatience or arrogance with laypeople.

    What to do? One option might be to simply step forward and say, "Um, excuse me, but is there an issue here or is there something I need to know about?"

    That way, they're made aware that you're there and, more to the point, that you heard what they said.

    All the best to your godson and his loved ones as he recovers - what a challenge so early in life.

    - Anna

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  2. Thank you for sharing this experience. Your godson now has two families. Everyone will be pulling for him. Me too.

    Pediatric cardiology is a world unto itself. It has been allowed to run as an island in many institutions. PC clinicians see so much life & death everyday. It is quite possible they never even thought as if the family wasn't present. It is not that they are mean to be solipsistic.
    They have suffered "Common Shock" (Weingarten, 2002) as a result of the inundation of daily life & death events. Your friend's reaction exemplifies that she has suffered it too.
    How wonderful it would be for clinicians to do "emotional well-being" rounds after clinical rounds? this does not have to take more than a few minutes or moments with peers. Patients and family should "check in" with each other once a day too. not just for a clinical report/summary.

    Erin, please know your friend and godson have a very special place in my thoughts and prayers. Please keeep us updated for when he heads home and tries out his new clothes.
    Warm regards,
    Mary Ellen
    www.pulseofpa.org

    ReplyDelete
  3. Thank you for sharing this experience. Your godson now has two families. Everyone will be pulling for him. Me too.

    Pediatric cardiology is a world unto itself. It has been allowed to run as an island in many institutions. PC clinicians see so much life & death everyday. It is quite possible they never even thought as if the family wasn't present. It is not that they are mean to be solipsistic.
    They have suffered "Common Shock" (Weingarten, 2002) as a result of the inundation of daily life & death events. Your friend's reaction exemplifies that she has suffered it too.
    How wonderful it would be for clinicians to do "emotional well-being" rounds after clinical rounds? This does not need more than a few moments with peers. Patients and family should "check in" with each other once a day too. not just for a clinical report/summary.

    Erin, please know your friend and godson have a very special place in my thoughts and prayers. Please keeep us updated for when he heads home and tries out his new clothes.
    Warm regards,
    Mary Ellen
    www.pulseofpa.org

    ReplyDelete
  4. Thank you both so much for your helpful and supportive comments. It is so helpful to have this discussion going. I hope it is helpful for others, too.

    Just an update, my godson was extubated the other day. He is now eating GREAT for the first time in his life. There are still a couple of things he needs assistance with, but it is miraculous what a baby can do in just a few days!

    Erin

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  5. So happy that he is extubated & eating. Such a great great sign. He and his family willr emian in my thoughs and prayers.

    Mary Ellen

    ReplyDelete

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