When 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)

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