Dialysis and Death (Part 2)

HIPAA logoWhen I sat down to write about my friend John’s passing, I wanted to make the point about death and dialysis and all the ramifications of it but I didn’t want these issues to interfere with my tribute to John and the high regard I had for him.  But, now I want to make some points about how poorly death is handled in the dialysis situation.

It took a couple days for me to find out about my fiend John’s death.  I’d been calling his cell phone for while and leaving voice mail.  I spoke with him once while he was in the hospital (for which I’m thankful because it was the last time we spoke).  That’s one problem I like to raise.  Why does it take so long for fellow patients to find out their dialysis friends have passed?  Can something be done about that?

The response I would expect from the facility and staff is:  “it’s a HIPAA issue”.  They are so frightened by possible litigation that they would rather “err on the side of caution”.  I can’t blame them but in the case of fellow patients, don’t we have some rights, also?  The American Hospital Association considered the matter of releasing information about a patient’s demise and had this to say:

Question:   Can the hospital tell the media the patient has died without getting the family’s permission? In other words, is “deceased” a condition that can be disclosed? Under the HIPAA privacy rule, if a patient has not asked that his or her information be kept out of the hospital’s directory, the hospital may disclose the patient’s general condition to anyone who asks for the patient by name.   HIPAA does not define what constitutes a “general condition.”   Disclosing that a patient is deceased, however, appears to be a permissible facility directory disclosure as a statement of the patient’s general condition.  A hospital may not disclose information regarding the date, time, or cause of death. (source)

So, in the case of a patient’s death, hospitals can release the information that the patient died. They can’t say much else but, at least, HIPAA doesn’t prevent them from reporting the death to people who inquire about the patient by name.  That means a dialysis center should be able to answer another patient’s question about the deceased patient without worries of being sued by the family.

It’s really dehumanizing for dialysis centers to keep patients in the dark about the status of other patients.  It reduces us to a less than human status when they don’t consider that we form relationships and friendships in the dialysis center.  We become like animals in a shelter.  They take care of our medical needs but not our emotional needs.  The fact that I found out my friend John was in the hospital was because I called him.  We usually saw each other in the center and, although, we were on different shifts, I would see him coming or going.  When we first met, we were on the same shift but lately he was changing shifts so I was used to not seeing him for several days at a time.  I would see his car in the parking lot, however, and I’d know he was okay.

Lately, though, I hadn’t seen him or his car so I asked about him.  I got a non-answer from the tech.  She glanced around to make sure no one was listening because she was obviously afraid to answer my question.  That’s why I called his phone.  I suspected something was amiss. He answered from his hospital bed and told me he had some problems.  I didn’t push for more as we chatted.  He seemed tired and I don’t like to disturb people in their hospital bed.  I figured we’d catch up with things later.  But that later never came.

Why did it take so long for me to find out from the center about John’s passing?  The staff knew we were friends yet I found out when a staff member happened to say, “Isn’t it a shame about John’s passing?” I hadn’t known and she assumed I did.  I’m glad she said something but I’m also disturbed that I didn’t hear two days earlier or at least the next day.  There needs to be a better way to communicate about fellow patients.  We care about each other.  Those feelings deserve some respect.

I don’t mean to be bitchy about this.  I want to honor John and change the way we are informed about our dialysis friends’ deaths. I’d like centers to consider this and, together with patients, we can come up with some method to inform about a patient’s death with all due respect for the parties involved.   Perhaps a form that can be signed by the patient instructing the center about what to do if they are hospitalized or pass?   I’d like some comments about this from both sides; patient and staff, pro and con.

Update 5/30/13: There’s more about this topic in Dialysis and Death (Part 3)

DevonTexas © 2013

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About DevonTexas

I am a person with ESRD (End Stage Renal Disease) which means my kidneys don't work. Forty or so years ago that would have been a death sentence but today there is Dialysis which means I can be hooked up to a machine that will clean my blood as the kidneys should. Three days a week, I go to a center and have too very large needles stuck in my arm to remove and replace my blood as it passes through a process where it's cleaned and the fluid is removed, a process taking a little over four hours each time. I want to advance knowledge about dialysis so that other patients can learn from my experience and mistakes. We shouldn't have to reinvent the wheel, eh? There is so much to be learned and experienced about our predicament. There are vast resources available to support us and enrich our lives but many patients don't know about them. There are also many issues that we have to deal with whether we want to or not. So I blog about them. All comments are confidential until I approve them. If you don't want your comment public, let me know and I will respect that. So, feel free to leave a comment. Enjoy.
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8 Responses to Dialysis and Death (Part 2)

  1. nachomama311 says:

    I’m sorry to hear about the loss of your friend. It’s hard enough to lose someone you were so close to as a friend, but also difficult to lose someone who was also a teammate, experiencing the same things as you and probably acting as a support system to you in his own way. My dad used to be a tech at a dialysis center in Dallas and I talked about this situation with him. I asked him how he usually handled this situation, and he said that if he knew someone was a friend of a patient who just passed, he would quietly let that person know. It wouldn’t be very professional or respectful to make any type of “announcement” to the clinic. However, I agree it would be nice to simply offer a friendly courtesy to those that person knew.

  2. debbzdays says:

    At one of the clinics I used to work at we would place a nice framed print that said in remembrance of…. and a single rose in a vase in the waiting room. It is sad and difficult for everyone when a life is lost. Dialysis patients and staff are like a little family community. You absolutely have the right to know. I think some clinic managers are better than others about being sensitive to this. My last manager was clueless and not much of a people person, so I would try to talk to the patients friends if I could.

    • DevonTexas says:

      Excellent idea! The picture and rose.

      And thank you for your sympathies. John/Chief was easy to love. He loved everyone so it was easy to love him back. I had a chance to meet his family and view a wonderful slide-show of pictures from his life. He’ll be missed.

  3. debbzdays says:

    Very sorry for your loss by the way. The fact that you are blogging in memory of your friend shows us just how much you loved him.

  4. I had something similar to this happen to me. I knew him because he went to the same dialysis center I did and it it is a very small one with only four chairs. It tools two days to find out what had happened to him. The charge nurse came around to everyone individually and told us about it. Also I asked about why we can’t know about other patients, they then told me that we could fill out some paperwork and put in writing that we would like it to be ok to tell the other dialysis patients about me if they asked. I will be filling the papers out tomorrow!

  5. It seems to be always different…we’ve had people pass away and no-one knew till you asked around…one friend,though,the nurse came over from the other unit just to tell us he’d passed away.I too find it disgraceful that dialysis patients’ state of mind is treated as non-existent.Nurses get grief counseling but not us!

  6. DevonTexas says:

    I go to a Dialysis Center In Shreveport, Louisiana for over a year. I find the attendance and the nurse very well trained and are exceptional. But, what I don’t like is the P.A. coming around blurting out my conditions, symptoms, medicines while others are in so close of an area to me. One reason is people that are not normal in our group, show up talking about smoking pot and drinking all night.
    I can tell you what every patient is taking as for as medicines, when they are taking narcotics and when they will or won’t be at home. This is all through the P.A. at the clinic, cause she goes be no ones rules. I had my yearly evaluation recently at the trans plant center and have voiced my concerns constantly. Hippa is for every patient and this includes in a “ward” setting with other patients present. I will fight this to the bitter in. I am a private person and plan on to have those I want know of my condition and procedures./

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