Heartbroken. Ball was dropped BIG TIME. Advice?

Nurses General Nursing

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This past week has been a very difficult one for my family and me, and I thought I would enlist the help of all you wonderful and wise nurses out there. I'm in need of a little guidance.

Just a little background: my uncle was 57, and he had down's syndrome. He has been in group homes most of his life, and was pretty functional until about two years ago. He started to decline cognitively, and then physically. My mother moved him to a SNF closer to us in Dallas a few months ago, so that we could visit him and monitor him a little more closely, since he didn't get the best care in the small town SNF he was in. At the time of the move, he was pretty much debilitated d/t contractures he developed at the last place he was in, had multiple decubitus ulcers, had a peg tube, and was septic. The SNF we moved him notified us immediately that they were transferring him to a hospital nearby. He improved after a couple of weeks and went back to the SNF. My mother was very involved in his care, and was generally notified if anything was changing. The past couple of weeks she had not gotten a chance to visit, but got report from other relatives that he was doing well. On Thanksgiving, however, things took a turn for the worse. He was found at about 0300 by a CNA, with vomit on himself and shallow breathing. When the nurse came in, he had stopped breathing altogether and was sent by EMS to a hospital nearby. He died at 0413, and the nursing home was notified at 0423 of the death. I'm guessing he aspirated, though we will not know for certain what the COD was until the autopsy results are back.

Now, this is where it gets bad. When he was transferred to the ED, no one in my family was notified. The hospital did not receive next of kin information from the SNF when he was sent. When the hospital pronounced him, notified the SNF, and requested more information on him, someone said they would have the nurse call... no one ever did. At 0715 on Thanksgiving, my mother received a phone call from a nurse, who didn't even have the right name, to notify my mother of the death. My uncle died alone in the ED on Thanksgiving, and was sent to the morgue. When I cried and screamed and asked why no one even called to tell us he was being rushed to the ED, all she could say was "Sorry." No explanation. After we gathered my grandmother and my other uncle together to go see him, he had already gone to the ME's office for autopsy. We never even got the chance to say goodbye. My mother can't afford to have a viering and a burial, so we are doing cremation-- she still hasn't seen her brother, never got to hold his hand, and will only be able to see him through a window before he gets turned to ash. We got a call at 10 pm that same day from another nurse, who sent her condolensces, but still could not offer an explantion.

There is no explanation. There is no excuse. There is no reason on this green earth that my family should not have been notified that he stopped breathing and was en route to the ED. There's no reason the ED should not have been given next of kin info. There's no reason that the woman who notified us could not get his name straight before she called to tell us he was dead. There's no reason that she asked to put me on hold to get another line while I cried and asked for answers. There's no reason that our last chance to see and hold him was so horrible taken away from us.

Needless to say, we are furious and hurt. This was a complete miscarriage of trust in a facility that was supposed to care for my uncle. We understand that people fall ill and can die suddenly, and without warning. Obviously we are upset about the death, but more than that is the break in communication that followed. I just needed to see who I should report this to, and what actions I can take. I'm not looking for retribution, though disciplinary actions is most definitely warranted. Nothing is going to give us that time back, but I want to make sure that this doesn't happen to another family.

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Specializes in Nephrology, Cardiology, ER, ICU.

I am so very sorry for your loss.

I agree the ball was dropped. I think I would start with the SNF to find out why info wasn't sent with your Uncle about next of kin. I do understand that in the case of a full arrest situation, things might get missed but if the papers didn't go with your Uncle to the ER, the nurse at the SNF should have notified you so that you all could go to the ER.

Again, I'm so sorry.

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I am so sorry that this happened to you and I am sorry for your loss. There is nothing anyone can say that can make things better, the truth is that the people who staff hospitals, nursing homes and other medical care facilities are only human and they can make mistakes, and when a chain of people are involved, the chance for mistakes increase. The only thing they can do is apologize and do their best to make sure that it doesn't happen again.

Just think of the mistakes you make within a week at your job, and then imagine that each of those mistakes in a hospital setting wouldn't be just oops, my bad, it would be linked to a life, a family and could potentially kills someone, disable them, bring mental anguish to them or their family. That's what it's like for nurses, living in fear that any little mistake could lead to something so horrible when your intention is only to care for others.

Just because they only apologized to you and didn't give explanations doesn't mean that they didn't go home and sob their eyes out on their husbands shoulder about how horrible the situation was and how even a little mistake carries such consequences. For example the nurse who worked for 20+ years with an impecable record and made a simple mistake that anyone could have made that resulted in the death of a baby and she subsequently killed herself.

Again, I am so sorry that this happened to you and I am sorry for the loss of your uncle. I watched a presentation not too long ago about a pastor who's family was in a car crash, everyone but his toddler son and himself died, but then his son was killed by a medication error a week or so later in the hospital. As you could imagine, he was completely devastated, but he didn't blame the staff, he praised the staff for all the amazing work that they did sacrificing and caring for others everyday, he knew that they were human and could make mistakes. He didn't want monetary compensation even though he was offered it, he just wanted them to remember that the decisions they make had the power to affect a human life and that they do their best to find out how the mistake happened and put in a processes that would ensure that type of mistake wouldn't happen again.

I am sending you love and hope that you find peace with what has happened.

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Specializes in LTC,Hospice/palliative care,acute care.

My advice is- don't focus on your anger at the situation to the extent that you don't process your grief. YES-the SNF should have called you, gotten the info to the ED and the ED should have contacted you .Report this to the admin of the SNF and the hospital and then let it go. 57 is an advanced age for Down's syndrome (though becoming more and more common ) He had a good life. Even if your mom is not having a viewing many funeral homes will allow the family to come in and visit privately with the deceased before the cremation. But be prepared-it's not pretty .....None of you should have regrets because you were not able to get to the ED at the time of his death-he was beyond knowing. Your mom moved him closer and spent time with him when it really mattered to him and he knew he was loved.

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Last year the father of my children went into respiratory distress while getting ready for work in the early hours of the morning. He was home alone at that time. He called 911. When they got to the house they found him on the floor and was not able to revived him.

My guess then he had his wallet on him..id, etc..plus he was known to carry always cash. He was taken to a nearby e.d. then transferred to another e.d.

We were not informed till early noon. The second e.d was trying to figure out his information. To this day I still wonder what happened to his wallet.

Nothing is perfect. Sometimes we are left with questions and we hang on to them hoping in some way it would add light to the situation. Maybe an error was made somewhere and communications got lost along the way. I don't know.. all I know is that the world needs more love and peace.

Namaste.

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i am so very sorry for everything, (((cm))).

how devastating for you and your family.

i agree, that an appt with the DON and administrator is warranted.

ask them how they intend to prevent any potential events such as this.

i would try very hard, to not make any decisions while feeling vulnerable.

mourn the loss of your beloved uncle, and focus your energies on him, and what he meant to you.

heartfelt prayers for reconciliation and peace.

leslie

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Specializes in Peds/outpatient FP,derm,allergy/private duty.

cm ~~ {{{hugs}}} I am so very sorry for your loss. I went through a similar experience with my dad's death at age 59 so all I can say is that it's a process that involves the 5 Stages of grief multiplied many times. It helped to speak with a wonderful ED nurse who did not try to brush off my questions and spoke about my dad with concern for me and dignity for him. I'll keep you in my prayers. :redpinkhe

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Specializes in Peri-op/Sub-Acute ANP.

I am sorry for your loss and I hope that you find some answers to the questions that are concerning you right now. Although it won't bring him back pushing for answers to your questions might help somebody else down the road if protocols are changed.

The only thing I can add is that even if you hare not having an official viewing, there is no reason at all why the family cannot have a private viewing at the funeral home prior to his cremation. Please ask the funeral providers about this. I am sure they would be happy to allow you a few minutes to pay your respects if you make an appointment to do so. It would be cruel and unusual for them not to grant your family this wish.

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Specializes in Critical Care; Cardiac; Professional Development.

I am so very sorry. I pray sincerely for you and your family to find peace in this awful turn of events.

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Specializes in PCU.

My heart breaks for your loss and the manner in which the news was broken to your family. It is terrible when the breakdown in communication leads to such horrible heartache and sense of betrayal.

Communication breakdown is the biggest cause of anger and resentment between healthcare providers and families/patients.

Although your uncle's situation was poorly handled as far as communicating information in a timely manner, maybe his passing and your loss might, in the future, benefit those less fortunate by allowing a system to be developed whereby a nurse transferring a patient to the acute care setting or any other place would have access to a checklist of things that need to be done before/during/post transfer (i.e. copies of mar, med rec, facesheet w/contact information for POA/POC, calls that need to be made, etc.).

As to the hospital, a meeting w/supervisors is in order. Having a list w/information about the patient, condition, and anticipating what the family might ask (how, when, why, etc.) before calling the family would be highly beneficial.

Usually anticipating where the communication breakdown happened helps to diffuse a situation, as does having timely information. This gives the family a sense that the person who is calling saw the patient as a person who mattered and is not just some random number.

Sometimes in the haste of our day we tend to forget that, although death may not be unexpected to us, it may come as a bit of a shock to family members.

With that said, I want to say that your uncle was fortunate in the love and caring that your family showed him while he lived. Down's children have come a long way in our lifetime. The love that you felt and still feel for your uncle shines through in your writing and, I am sure, enriched his life for the short time he was allowed to be with you. And, I am sure, he enriched your lives just as much. God bless.:redpinkhe

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IMO, this isn't about mistakes. Everyone realizes mistakes happen. This is about how, too often, mistakes are handled in medical situations. No explanation, no apology, no empathy, no consideration -- essentially no authentic communicattion. Risk management takes over and it's all about CYA. What results is what you read from the OP. Anger, resentment and often retaliation. It becomes get even time. For the next step it's not uncommon for patient families to consult a lawyer. I'm not saying this is the best path to take. I'm saying that this is what happens when lack of communication is interpreted as lack of caring, empathy, respect, dignity. Studies show that when this happens, patients are more likely to sue and for much more than if honest, open communication had taken place.

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I'm sorry for your loss. I hope you can get your questions answered and find some peace.

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