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Author Topic: Donor Privacy, Helluva Lot to Learn  (Read 438 times)

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Offline PrivacyFreak

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Donor Privacy, Helluva Lot to Learn
« on: August 15, 2020, 01:39:54 PM »
Hi y'all! I wish I'd seen this forum before I donated, but such it is. I donated a kidney last month and am still reeling about how my personal privacy was dismissed throughout the entire process. This was my first surgery ever, so perhaps I was naive, I want others to know their rights and what they can ask for. Feel the same way? Want to know more?

Offline Michael

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Re: Donor Privacy, Helluva Lot to Learn
« Reply #1 on: August 16, 2020, 09:24:02 AM »
Yes, I'd like to know more. What happened?
Michael
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Offline PrivacyFreak

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Re: Donor Privacy, Helluva Lot to Learn
« Reply #2 on: August 16, 2020, 02:06:04 PM »
I'm not sure where to begin, perhaps it best to explain the situation in case that matters.
  • I volunteered to donate to someone I didn't know (that part turned out awesome)
    I've never had any surgery before in my life, despite being half a century old
    My motivation was to help someone's family have their loved one longer and better.
    I told just 3 people about my journey before I did it.

Another important bit to acknowledge, that is not at all obvious to anyone - at least no one I've found yet:
As a donor, my position was completely voluntary, and not necessary. Any other patient in the hospital is there with a need - a need for healthcare folks, who are all doing their job. So right off the bat the relationship between patient and doctor with a donor is tacitly very different, as they are used to having the power and being needed.

OK, so blah blah blah, there's the initial online registry and those first few phone calls from people who are VERY excited, then some detail starts to emerge about a potential match. Then begins the round of testing - from tip to toe, inside and out - to make sure I qualify as a healthy donor. All tests I easily justifiied as "should have", "need to", and "good to know". Then come the zoom interviews with a half dozen people I don't know, don't truly introduce themselves, and many of whom I never saw again - yet all of whom say they are part of my 'kidney donation team'. More forms, more tests, then I get a surgery date. All very exciting!

This is when I start to ask some more specific questions about the process - pre-op, the surgery, post-up, etc. - what to be prepared for. I don't really get specifics, so I hit Google with determination. I'm someone who wants to know. And yeah, maybe I should have asked earlier in the recruitment process, but now's as good a time as ever given the surgery is in less than 2 weeks.

Google was a Mistake. I know now there's a reason you have to search deep into Google to get the answers to my questions: you do not really want to know. So now my ignorance turns to fear.

Act #1
I express some personal concerns about the preop process in an email and was told the surgeon would be calling me that afternoon. On that call, instead of understanding and and a discussion about solutions, I was told that she would "think about my case and get back to me as to whether or not she thought I would make a good donor." For the record, this is 10 days from the scheduled surgery date. Tests are done. I'm cleared.

Act #2
In a last ditch attempt to really be heard, I write a very personal and private email to the coordinator (because no doctor emails are released) offering painful clarity for the reasons I have my concerns. This email is then forwarded to the intended recipient. I discover later, it was emailed to the entire coordinator team. If I had known any of this was a possibility, I would have cancelled rather than to experience such embarrassment. I didn't write that letter to everyone. I wrote it to ONE doctor.

Act #3
In an attempt to smooth things over with the "erratic and unstable donor", I am reassigned to the "good cop" surgeon on the team, who now wants to talk with me. The link I'm given for the call brings me into a Zoom meeting of ANOTHER donor team discussing very specific details about their patients: very clearly, I might add - with charts, and remarks I'm sure they would not have said if they had noticed another person had entered the meeting. I tried to be noticed, as they continued on. When I was acknowledged, they actually told me to stay! They all eventually left and I was the only one remaining in a meeting that was not for me, with information any one of those patients could have sued them over for lack of privacy. All I could think was my file. My situation. What I had revealed. Did someone come early into a meeting unnoticed and hear my personal issues?! I will never know, always fear.

I'll stop here, I'm not sure how much more you want to know - the point is, as a donor, I was treated like a needy patient, which is bulls***. I will speak up. This is still my body. And yes, you will, eventually listen.

I learned how to stick up for myself, and that I could. In hindsight, it still makes me sick that I had a contract made requesting simple courtesies one would naturally assume to be standard.  I know now those courtesies are never respected otherwise, and so few even know.

Playing the role of donor, among an army of caregivers, requires a clear understanding of your position and your rights, the ability to know who is really listening, and more trust I than I was prepared to give.

Offline Michael

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Re: Donor Privacy, Helluva Lot to Learn
« Reply #3 on: August 19, 2020, 09:02:06 AM »
Thanks for sharing your experience. As I was reading your message, I wondered if you had an independent donor advocate available to you -- someone who is separate from the transplant team who is on your side, can inform you of your rights, and be someone you can confide in. It seems things broke down when you were expecting the transplant coordinator to act that way. Did they offer an advocate to you?

Have you shared any of your experiences with the transplant team? Have they asked for feedback? Is there a hospital ombudsman you can talk to about what you experienced?
Michael
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Offline PrivacyFreak

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Re: Donor Privacy, Helluva Lot to Learn
« Reply #4 on: September 08, 2020, 10:19:38 AM »
Hi, sorry for the delay in responding. The recovery from being a donor is a fascinating experience. I'm healthy and thought I'd run through this without any problems, but wow, the intense, deep exhaustion that seems to come out of nowhere is a real blow. There are more days (nights?) than I care to admit where I'm sleeping 16+ hours. Sort of makes it hard to keep a schedule!

To answer your first question with another, there are independent people on kidney care teams? Because if there was anything independent about anyone on my assigned kidney care team, it would be news to me. I have more experiences I could convey that assured me they convened together weekly to discuss everything about me. FWIW, I would have jumped at the chance to talk with anyone outside the kidney clan. I certainly wouldn't be feeling the need to talk about it here, that's for sure.

In regard to your other question, yes, I have expressed my frustration to them. Repeatedly. I doubt highly there was anyone on the team who didn't know of every note and call I sent.

I'm not familiar with a hospital ombudsman, never heard the term before in my life. I clearly should have done more research and feel stupid for not doing so before the operation.

Please know that all of my expressed frustration is with the lack of privacy in the process, not the act of donating a kidney. I'm glad I did it! I'm blessed to now have this amazing, overriding feeling knowing there are real people in a real family who are now looking at a much brighter future, just because of an organ I could totally spare!

Offline PrivacyFreak

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Re: Donor Privacy, Helluva Lot to Learn
« Reply #5 on: September 08, 2020, 10:30:10 AM »
I mentioned this in my original post and wanted to round back to get your opinions, as I sort of assumed HHS would have a field day with these kind of HIPAA violations, but what do I know.
Q. Do you think this is typical or normal procedure for healthcare communication around the country?
Q. Do you think patients would consider breaches like this acceptable?

In an attempt to smooth things over with the "erratic and unstable donor", I am reassigned to the "good cop" surgeon on the team, who now wants to talk with me. The link I'm given for the call brings me into a Zoom meeting of ANOTHER donor team discussing very specific details about their patients: very clearly, I might add - with charts, and remarks I'm sure they would not have said if they had noticed another person had entered the meeting. I tried to be noticed, as they continued on. When I was acknowledged, they actually told me to stay! They all eventually left and I was the only one remaining in a meeting that was not for me, with information any one of those patients could have sued them over for lack of privacy. All I could think was my file. My situation. What I had revealed. Did someone come early into a meeting unnoticed and hear my personal issues?! I will never know, always fear.


Offline PrivacyFreak

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Re: Donor Privacy, Helluva Lot to Learn
« Reply #6 on: September 08, 2020, 10:40:05 AM »
There's another part of my rant that specifically I'd like to know what others think:

"...I had a contract made [with the surgeon prior to surgery] requesting simple courtesies one would naturally assume to be standard. I know now those courtesies are never respected otherwise, and so few [having surgeries] even know."

Q. If you had surgery, did you want to know the details? If so, did you ask? What were you told?
Q. If you have not had surgery, do you want to know the details? If so, how will you go about finding the answers?

Offline Michael

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Re: Donor Privacy, Helluva Lot to Learn
« Reply #7 on: September 11, 2020, 08:23:55 AM »
If you have a Facebook account, you could post your questions in the LDO group there. It's a "closed" group so only people in the group see messages. We don't get much traffic here anymore so you probably won't get much of a response to your questions... but we'll see.

As an alternative, I can post a message in the Facebook group and point them to the message thread here, asking for people to comment.

Based on what you're asking, I'm wondering whether the transplant team did much to inform you about the testing, preparation, surgery, and recovery. There's been a lot of work in the transplant community to improve donor education in the spirit of improving "informed consent." LDO was started 20 years ago because the information and process was so poor; many donors (including me) had very limited information. The situation at the hospitals is much better now, and there are also many more online resources with good information.

So, to your questions about the surgery, it shouldn't be an option as to whether a potential donor would want to know the details about the surgery. They shouldn't have the choice. The transplant team is obligated to educate the donor. (OPTN provides guidelines on what should be shared, but there is no enforcement.)

As for the privacy breach, that's really surprising to me. Every health care professional knows the limits on sharing personal health information in the U.S. because of HIPAA. I don't think what you experienced is "typical," and someone should have called it out in the moment.

As for the ombudsman, not every hospital has one. You might check to see. If so, that's someone who is essentially an independent problem solver for situations just like yours.
Michael
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Offline PrivacyFreak

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Re: Donor Privacy, Helluva Lot to Learn
« Reply #8 on: September 11, 2020, 10:05:18 AM »
I really appreciate your reply and will look into the Facebook group for my questions. Many are more about transparency of surgeries in general, though kidney donors are in a unique position to deserve it in detail.

To your point, if I had been told the real information from the patient's perspective (even better if it was an unbiased mediator), I think my concerns could have been managed earlier and easier. I think my mission now, after donating, is letting potential donors know they

  • have a right to ask and be told about the details of what happens to their body
  • have a right to request more respect and privacy throughout the process

As a donor with an assigned support team, I don't recall anyone saying they were "obligated to inform" - I got a lot of "I'm obligated to do no harm" as they were assessing my value as a donor candidate. Once I was approved, the information I received was limited to reminders for appointments and not to eat after midnight.

Donor reality is that the kidney team practices managed transparency until you have a surgery date. To their credit, they clearly thought they were doing the right thing by asking at the end of each meeting, "Do you have any questions of me?" They just don't know that's the wrong question altogether when the recipient doesn't even know what to ask. Here's the reply I wish I had given:


Quote
Tell me what I don't know. Tell me everything, every detail, that you're going to do to my body from pre-op to hospital exit.

Offline Michael

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Re: Donor Privacy, Helluva Lot to Learn
« Reply #9 on: September 12, 2020, 01:53:00 PM »
Something is seriously amiss. The hospital is responsible for obtaining "informed consent" from you before the surgery can be performed. That's a legal concept, and it involves your signing a statement that you have received enough information to understand the surgery, and based on your understanding that you consent to the surgery.

Here is a UNOS check list that is intended to guide a transplant center in what should be included in "informed consent" education: https://optn.transplant.hrsa.gov/media/2162/living_donor_consent_checklist.pdf

Did you get any materials to read and/or a web site to visit with information on the living donor surgery? Some transplant centers have you attend an educational session -- like a class. In any event, you should have been provided with a formal education on testing, preparation, surgery, and recovery. If not, then technically you could not have been sufficiently informed to consent to the surgery.
Michael
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Offline PrivacyFreak

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Re: Donor Privacy, Helluva Lot to Learn
« Reply #10 on: September 14, 2020, 10:58:52 AM »
IMHO, the checklist omits a HUGE part of the process: the entire part in which you are under anesthesia, i.e., the surgery.  If the bold line item below was part of the checklist, my life would be so much better right now.

Section 2, point 3...

Provide to living donors:
3. Instruction about all phases of the living donation process, which includes:
* Consent
* Medical and psychosocial evaluations
* Pre- and post-operative care
!!  How your body is handled, and by whom, before, during, & after surgery.
* Required post-operative follow-up according to Policy 18.5: Living Donor Data Submission Requirements.

I'm still not mentally right about what information is held back from living donors specifically, and also surgery patients in general. It's obvious the healthcare system doesn't want patients to know. If the assumption is that patients don't care, shame on them. Ask first. Assume later.

I appreciate this forum and the chance to express my sadness.

 

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