Comments on: Aftermath

By: Beth and John

Beth and John — Sun, 13 Apr 2008 20:43:48 +0000

Dear Chaya,

As a nurse who practiced in a hospital, I know about human error. I felt it every moment that I worked with patients–that I could make a mistake, that I had to be right on it at all times. But I got into nursing late in life. If you’ve been in the job forever you become accustomed to not being as alert–I think that’s true of many jobs. It’s not an excuse, never an excuse, but it happens. Too many patients, too much going on. Thank God you are there–an advocate is necessary in today’s healthcare situation. Beth and John

By: john balan

john balan — Sat, 12 Apr 2008 23:26:57 +0000

What would have been the choice had you been informed and not accepted the material? Was there an alternative? What would have been the delay?

By: stargazerlily17

stargazerlily17 — Mon, 07 Apr 2008 02:53:24 +0000

I absolutely agree with doc with cll and many others including Chaya. Most of us are not interested in picking fights during a time that is stressful enough without adding conflict. I learned many lessons during my chemo and radiation last year for a very rare cancer and now that I am my husbands advocate as he journeys down the path of cll/scl I will put those lessons learned to good use. I also learned that HIPPA is a great big farce so do not rely on HIPPA regs to protect your privacy or the privacy of your loved one. Eileen

By: WAYNE WELLS

WAYNE WELLS — Tue, 01 Apr 2008 20:56:54 +0000

Dear Chaya,
I agree with the well articulated comments of previous posts and just wish to add that after I was first diagnosed I had a series of incompetent actions performed by a nurse at a local Cancer clinic. None life threatening or grave like your situation but it was a red flag to staff incompetence. Like the “dirty collar” incident I empathize with your reluctance to confront. My solution was to write a detailed letter and send it to my oncologist who ran this clinic. The result was an extended time at my next appointment that included not exactly an apology but a promise that he had made a thorough review with his staff over my letter and thanked me for bringing it to his attention.

Having little sickness in my life prior to my CLL this was a wake-up call for me that I would be dealing with people who are not only doctors and nurses that are nice people but human beings capable of sloppy work, incompetence and in need learning about it.
Soldier on!

By: Margaret

Margaret — Mon, 31 Mar 2008 19:38:41 +0000

There is a comment by one of the above writers that need for information may be related to age with the older patients preferring to maintain the “doctor knows best” attitude. I think the research shows that information and decision-making are variables of our personality. Because Cheya is frequently using articles to point out pieces of information, I looked up a few of the hundreds of healthcare journal articles on information and decision-making. Here are a few of them with the one on information seekers, information monitors, and information blunters with full abstract.

Kiesler, D. J. and S. M. Auerbach (2006). “Optimal matches of patient preferences for information, decision-making and interpersonal behavior: evidence, models and interventions.” Patient Educ Couns 61(3): 319-41.

Miller, S. M. (1987). “Monitoring and blunting: validation of a questionnaire to assess styles of information seeking under threat.” J Pers Soc Psychol 52(2): 345-53.
Subjects were divided into information seekers (high monitors)/information avoiders (low monitors) and distractors (high blunters)/nondistractors (low blunters) on the basis of their scores on a self-report scale to measure coping styles, the Miller Behavioral Style Scale (MBSS). In Experiment 1, subjects were faced with a physically aversive event (the prospect of electric shock). High monitors and low blunters chose to seek out information about its nature and onset whereas low monitors and high blunters chose to distract themselves. This effect was strongest with the blunting dimension. High monitoring and low blunting were also accompanied by sustained high anxiety and arousal. In contrast, low monitors and high blunters were able to relax themselves over time. In Experiment 2, subjects worked on a series of tests that presumably predicted success in college. They could attend as often as they wished to a light that signaled how well they were performing. Results showed that coping-style scores accurately predicted informational strategy, particularly with the monitoring dimension: High monitors tended to look at the light whereas low monitors tended to ignore it. Thus the MBSS measure of coping styles appears to be a valid instrument for predicting behavioral strategies in response to both physical and psychological stressors. The theoretical and practical implications of these findings are discussed.

Milton, C. L. (2007). “Information and human freedom: nursing implications and ethical decision-making in the 21st century.” Nurs Sci Q 20(1): 33-6.

Schattner, A., A. Bronstein, et al. (2006). “Information and shared decision-making are top patients’ priorities.” BMC Health Serv Res 6: 21.
CONCLUSION: Beyond its many benefits, being informed by their doctor and shared decision making is a top patient priority.

Shabtai, I., M. Leshno, et al. (2007). “The value of information for decision-making in the healthcare environment.” Stud Health Technol Inform 127: 91-7.

By: Grant

Grant — Mon, 31 Mar 2008 14:12:02 +0000

Sounds to me like a mistake was made and if the medical center would provide you with its policies and procedures you would likely find that someone failed to follow them.

While allusions to government bureaucracy might express the frustration one feels, thankfully most medical centers are private institutions competing in a marketplace for consumer dollars. And thankfully, consumers have choices about where they go for medical services. While Harvey and Serena may not have this choice, incidents like this will determine where other patients decide to go. Further, consumers have legal recourse against private companies that they would not have against the government. Informed patients, actively seeking the highest standards of care will have a positive impact in a free market.

I think Harvey is lucky to have such a dedicated advocate taking care of him, especially when he is most vulnerable and perhaps not fully capable of looking out for himself. Just because some patients do not want all the information doesn’t mean that those who do should be denied or disregarded. Do not back down!

By: Hal Lepoff

Hal Lepoff — Sun, 30 Mar 2008 21:42:45 +0000

Dear Chaya,
I was appalled to hear of the error that the University of Minnesota Medical Center, Fairview made on PC’s day zero. Calling the mistake a case of miscommunication is not only an understatement but a new definition of the word. It was clearly a case of non-communication. Unfortunately even if you had been informed, as you should have been, it was too late in the game to fire the “you know whats.” (As you once wisely advised me.)
Your “gentle and generous doctor friend” may have your best interest at heart, but I think he is misguided. Perhaps he (or she?) has spent too much of his life in a hospital setting to have an objective view of this debacle.
The process apparently fell apart when a young NP failed to pass on information from “cell processing.” Youth is no excuse. Inexperience should have been the reason that the information went to the next level.
If I where part of the chain of command at Fairview, I would be very seriously trying to do some damage control. This transplant is probably the most widely followed in all of CLL history (at least by us patients), and I doubt if any of us would ever go to Fairview for any sort of treatment.
I’m glad that it is everyone’s belief that it was not a “really” serious nick, and am hopeful that the result of this procedure will be a long and healthy CLL-free life for PC.
As you always say,
Be well,
Sincerely, Hal Lepoff

By: dmackinnon

dmackinnon — Sun, 30 Mar 2008 15:09:55 +0000

Clearly there was a mistake made here, presumably by a nurse practitioner. It was a serious mistake and it is totally proper to raise a hue and a cry and expect some changes in the hospital procedures. You raise the hypothetical question whether if your doctor had known before the transplant should he have informed you of the situation. Yes, he should inform you along with providing his advice on how to proceed. That is what his job is!!!! That was evidently not the situation here, and presumably your confidence in the transplant docs remains relatively untarnished (trust but verify!!!). I am a firm believer in saving your ammunition for the important incidents and this certainly qualifies as one. Having just spent 2 days with my husband in a cardiology unit I witnessed many less than desirable but no life threatening actions. Some were easily remedied by my request or questioning and some very low level incidents I just ignored because, while a sqeaking wheel gets the grease, too much “fussing” can be counter productive causing staff to tune you out or ignore you. I have found that good professional medical staff actually respond positively to patient advocacy, particularly if you take the time to provide positive feedback as well.
I keep you in my thoughts,
Diane

By: Laura

Laura — Sat, 29 Mar 2008 23:27:54 +0000

Chaya,

Obviously, what happenned to you and Harvey should not have happenned. The fact that it did happen shows that there is a problem at the hospital with the protocols for cord blood transplants. In order to get the hospital to act as an institution, so that something like this does not happen again, is to get the hospital to review and correct the protocols and procedures it does have in place. They did not work and they should have. One thought (based on my experience as an attorney — sorry) is to report this incident to JCAHO. Nothing gets a hospital’s attention like a report/complaint to JCAHO – since it must remain JCAHO accredited to get federal monies, insurance money, etc. JCAHO is supposed to look at issues like this and determine what procedures and protocols the hospital has in place to prevent them; why they didn’t work, etc.

You have done so much for all of us with CLL and what you do will and does make a difference.

Praying for PC and you.
Laura

By: brian

brian — Sat, 29 Mar 2008 22:12:06 +0000

Chaya,
Simply put, proceeding with the cord blood HSCT was the right and only possible decision, and not informing you was wrong. Not doing something is doing something, and the hospital and ultimately the doctors are responsible. However, you have bigger fish to fry now, and you are correct to keep focused on your next challenges.
I am most grateful for your blog. My HSCT is scheduled at COH for 6/24/51
Stay strong
Brian, another doc w CLL