Questioning a death certificate

[Vimto1991]

I lost my dad on the 26th, I’m still in shock. He wasn’t healthy, but I wouldn’t pin he’d die this year. He was only 60.
he fell down the last step on the stairs at home and vomited and pooped black so they called an ambulance as he was on blood thinners. At hospital they didn’t suspect internal bleeding but kept him in as his kidneys weren’t great (he had chronic kidney disease but this had worsened). He also went through severe alcohol withdrawal. On top of this he had a chest infection (which he’d had since mid feb but refused to get help for) and they gave him antibiotics.
after 7 days they saw his hb levels go down, normally due to internal bleeding, so did an endoscopy, they found ulcers, inflammation and varices but no bleeding. They monitored him for three more days and discharged him on a Thursday.
by Tuesday he slept the whole day and didn’t pee - my poor mom thought he was just tired and hadn’t drank much so wasn’t peeing, and Wednesday he collapsed when the carers were helping him out of bed. By the time he got to hospital his heart was failing, he had low blood pressure, and low temperature. The doctors said it was sepsis. They couldn’t give him an IV of antibiotics due to his failing heart so I was called in to expect the worse. Same day put on palliative care and he passed away half hour after we were told to expect his decline.
his death certificate simply states:
pneumonia
contributing but not related to that:
acute kidney injury
alcohol related liver disease (he was never tested for this, on discharge they said 6-8 weeks he could have a scan)

they didn’t do a post moterm, my mom didn’t push for one. and she didn’t want to question the death certificate. How can he be in hospital for ten days, come home, only to die of sepsis, but then apparently the death certificate states he never had it?

I don’t want to go against my mom but I do want to question this. Does this sound a bit weird to you?

Sorry for you loss OP. I guess the question is what are you looking to achieve as a result of challenging the certificate.
Maybe you could ask for a debrief to talk through what happened to him? It does sound as if he had multiple problems so the outcome possibly wouldn’t have been different no matter what was noted on his certificate .

I agree ask for a debrief

They will have a lot of information from routine bloods etc.. def his liver function etc and they can talk you through this.

Wanting to know why is a normal part of grief and shock, but I think talking to someone with that information would help.

I'm so sorry for your loss.

My dad was the same but his background illness was Parkinson’s , cause of death was urinary sepsis , secondary Parkinson’s

I understand your concerns but reading your post I honestly think it’s fair enough

It sounds like he had a lot of comorbidities and he died of a combination of many things, rather than one or the other.

it’s possibly because the sepsis wasn’t the cause of death, the other things were, and sepsis was a consequence of those. Like saying he died of cardiac arrest, if you see what I mean.

personally I don’t there’s anything to be gained by challenging the death certificate, but I agree with the others that a debrief may help you come to terms.

I'm so sorry, its obviously a shock, especially with everything happening so quickly.

It sounds like your Dad had low blood pressure from a combination of low fluid volume & poor heart muscle contraction. The low volume because of bleeding / dehydration, exacerbated by infection, and then poor cardiac output from the reduced volume, poor cardiac muscle function and poor kidney function.

He must have been extremely poorly and I hope that his final moments were gentle.

What is it that you think changing the death certificate would help with? Is it that you want to understand a little better? Perhaps a debrief would help you?

I’m sorry for your loss. I think you may need to give yourself some time to process the unexpected loss first and then if you still feel the same ask for a debrief like others have said. What were you expecting it to say? Do you disagree with it all?

I’m not sure what I’d gain from questioning to be fair. Which is why my mom isn’t. In her eyes, it won’t bring him back, for me, I just feel like I can’t move forward without answers as to why he died, it won’t change anything, I think my grief is holding onto my dad with these questions, like I can still save him.
he was really poorly in the end, he was very agitated and constantly saying he wanted to go home / needing his mom (she died a long time ago), but couldn’t even open his eyes, yet was pulling at his oxygen mask/cannula. We asked for sedatives so many times and I asked for painkillers. Once he had these he calmed down and passed shortly after. I hope his final moments hearing my mom and I, with the painkillers kicked in, means he could be at peace. It was still horrible to watch him die. Im only 32 :(
he was terrified of hospitals and dying, which is what makes this harder.
I have a ten month old daughter and only one photo of them together and no video of them together. She’s not going to remember him and I regret not taking more :(

What a shock you have had. It sounds like he had a lot of comorbidities, and if he needed carers at a relatively young age, was unwell enough to need them.

It does sound like a debrief would be your best option initially, then see how you feel after that? You can contact PALs.

I had questions about my dad’s death certificate too op. I felt like it was a worthless ten-second piece of guesswork so I rang the hospital who arranged a senior medical examiner to talk it through with me.

After numerous and uncaring failings by that hospital, talking to him was actually the best thing. It didn’t take away the pain and injustice but it did explain to me more about my dad’s last moments and what limited options they had had in terms of treating him. It really helped me move beyond the anger and frustration.

Deat certification roles don't allow sepsis to be put. It's considered a mode of death rather than a cause of death. The infection driving the sepsis; in the case pneumonia, has to be listed. It would generally be assumed that sepsis was then the mode of death though technically hypoxia would also be possible.

This is correct. Sometimes when someone dies with sepsis the cause will be listed as multiple organ failure or similar. Death certificates aren't a detailed forensic analysis.

Ah okay, that most likely explains that one then! I do have a bereavement nurse calling me to talk me through my questions. My main worry is they did indeed miss an internal bleed, and worrying they put his liver issue down but hadn’t tested his liver (other than discovering varices), they also didn’t list his pulmonary hypertension but I guess that wasn’t contributing.

thank you everyone. Definitley food for thought, grief is strange, it can make you question every minute thing. :(
more almost been three weeks without him, and it feels like 5 years since I last heard his voice.

@User613 that's really interesting. I didn't know that. My mum died five years ago as a result of sepsis but her death certificate said

1 pneumonia
2 Hodgkins Lymphoma

We were surprised as she had had successful chemo for the lymphoma and we had no idea about the pneumonia. Presumably her immune system was weakened by the chemo. Her death was a shock to us all.

Sorry for your loss OP 💐. It's so hard losing a parent x

Hi OP
My mum had some underlying conditions but was pretty active when she died suddenly after a minor operation. I had a lot of questions and the hospital arranged for a medical examiner to review the notes and ring us. He explained things very clearly and it definitely put my mind at rest. The turning point for me was hearing him say that had she survived it was likely she would have been severely permanently disabled and I know my mum would not have wanted that.

Hearing this gave me a measure of peace and allowed me to accept it. So yes, it's worth asking for a medical examiner to review and talk you through it all. I'm so sorry for your loss.

His blood tests may have given a good indication of alcohol-related liver disease, and they may have been able to tell his liver was enlarged just by feel. You have had an understandable shock, and it sounds like a debrief with the medical examiner would really help you to process what's happened.

Thank you all for your kind words, and I am so sorry so many of you have experienced a loss similar to mine. Whilst it’s nice hearing this from someone who has experienced similar grief, I hate that people have gone through this, too.
whilst the initial sadness and outbursts of crying her subsided, I still feel lost and confused. Hopefully it gets easier soon. 💐

@tribpot when the doctor was discussing palliative care I questioned his liver and they said the bloods were fine for his liver which I thought was odd. They did diagnose him with portal hypertension when he stayed in hospital, which I guess twinned with the severe alcohol withdrawal was maybe enough for them?

I’m sorry for your loss.

Sepsis = really bad infection somewhere in the body causing the bodies other organs to suffer/stop working (non technical description)

death certificate is supposed to be the cause not the mode of death (so not cardiac arrest/hypoxia/sepsis) but what caused that - so in this case the really bad infection stopping the other bits of the body working (sepsis) that sadly killed your father was due to a chest infection (pneumonia).

The next bit is supposed to list other conditions that made your dad more likely to succumb to the cause of death but didn’t directly lead to it (this is the kidney injury and the liver disease. Having these sadly would mean your dad would be more likely than the average person to become seriously unwell (get sepsis) when he got the chest infection (pneumonia).

The blood tests will have almost certainly likely shown liver disease as you can tell a liver is sick from blood tests. There are many causes of liver disease and without a biopsy it’s not ever 100% sure (although some causes can be ruled out by blood tests) but if your dad was a dependant alcohol drinker then it is more than likely his liver problems were down to alcohol. You don’t say what test was planned for the liver but if it was a fibroscan then that wouldn’t have shown a cause either but would have had said how bad the liver disease was. Most people with alcohol related liver disease are diagnosed on the basis of blood tests and a dependant alcohol history.

sending hugs (non mums net) to your mum, you and the rest of your family

I don’t want to try and guess what that doctor meant because I wasn’t there and I don’t want to speak for them but I would suggest that the liver disease didn’t actively cause your fathers death -as in he didn’t die because his liver was failing (if that was the case it would be in part one of the certificate) and so the liver tests may have not been to bad at that point but having the liver disease meant he was less able to combat the pneumonia and sepsis. (If he had varicies, portal hypertension and was a dependant drinker then he most certainly did have some element of liver disease I’m afraid)

When my DF died, the coroner questioned his death certificate and it was revised to this:
He died because his heart stopped beating, because he had a massive gastric haemorrhage, due to pancreatic cancer. This was what was on his final death certificate.
@Vimto1991, I know you are questioning your father's treatment, and I did too (I was so frustrated by the fact that nobody seems prepared to do anything proactive for my Dad when he was in hospital) - I found out after my DDad died that 2% of people die of a gastric bleed when they have pancreatic cancer. We only knew that he had a sizeable tumour with a major blood vessel running through it, which made it inoperable. We weren't made aware of the risks associated with it. I was angry at the time, but eventually came to realise that whatever was done, my Dad was going to die anyway. I eventually made my peace with that, but it took some time. My dad only went in to hospital 28 days before he died. It was a massive shock, even though I knew he was unwell.
I hope you eventually find some peace too.

So sorry for your loss OP. It would be such a shock and still very raw.

Are you in the US op, hence spelling it mom? If in the UK, ask for a hospital debrief. Maybe a chat with the bereavement nurse is the same where you are? I'd write out your questions to take with you.

Even though the Dr might have said your dads blood results were 'normal' for his liver- they were clearly aware of his liver disease. The fact he had varices means it was very advanced already. It does sound like he has multiple medical conditions going on sadly. x

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May I but in to say Thank you - you have also helped me to understand what was written on my husband's death certificate.

I am sorry for your loss and perfectly understand the need to question things.

You said that you are especially sad that your daughter won't remember him and that you don't have much video of him.

Don't despair of keeping a connection alive for her. Stories matter too in holding on to memories. Our dead live on a little while we talk of them.

I feel that I know some members of my own family (despite never actually meeting them) because of the many stories I have been told about them.

I know things they said-thoughts they had -funny/interesting/ordinary things they did. I know what they taught their children - sillinesses and contradictions -mistakes made -things they bought-sings they sang-favourite jokes- books enjoyed -dances performed -foods hated... I know that things I am and things I feel or do are related to them.

They are real people to me and part of my family-everyday.

Same with my Dad who died just over 2 weeks ago. He died of sepsis due to a wound on his foot (type 1 diabetic). His death certificate said primary cause was multi organ failure & ischaemic lower limb. He was seen in hospital the Saturday before he died as his foot wound had deteriorated massively overnight and discharged home, then his general condition went downhill (shivering, shaking, confused) and readmitted - died 3 days later. I am so cross he wasnt kept in on the Saturday for me that was the window of opportunity to save his life, the vascular Doctor saw him for a few minute - no xray on his foot and no doppler to listen to his foot pulses. His diabetes was out of control too and yet they still didnt keep him in. I have spoken with PALS and put a letter of complaint in and will be having a 'local resolution meeting' with the NHS trust in which he died so they can answer the many questions I have regarding his care. The care was shit and he wasnt moved to ITU until just before he died despite him already being treated with 3 lots of iV anti-biotics for his foot, his heart being overloaded with fluid, his kidneys failing and his inflammatory markers being massively raised. I am so so sad this happened and he died alone and it has added a lot of pain to my grief.

I had a chat with the Sepsis Trust last week which was helpful, might be worth a call to them. Sending love to you and feeling your pain x

Sorry for your loss. Re the liver disease. The history of alcohol along with finding varices would be enough to confirm this. You don't usually get varices without significant liver disease.