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Can someone explain how cause of death is decided and recorded

(8 Posts)
hamstersarse Thu 23-Apr-20 11:05:41

I have heard varying accounts of this, but I still don't understand so I am sure someone else will have the knowledge on here.

This is what I don't understand:

- Person with pancreatic cancer, obviously a terminal illness (life expectancy average of 6 months), and they have had it for 4 months and so very weakened. They get CV-19. Is the cause of death CV or pancreatic cancer? Or are they both recorded? How does that work on the statistics?

I might be asking the wrong questions, but I don't understand how both things are not relevant, and currently I am thinking that this goes onto the CV stats only? Happy to be completely wrong!

OP’s posts: |
AmelieTaylor Thu 23-Apr-20 11:15:55

There are two different places and both things are recorded. It's up to the Dr which to put where.

It will never be clear cut how many died OF & how many died WITH CV but doing a 5 year comparison they'll be able to get a rough idea of how many people died in a certain period that wouldn't have normally, but it'll need to be a while after this because this will have killed people much sooner than they'd normally have died, even if terminal & they'll need to allow for that

Plus lots of people who would might have had other illnesses but would otherwise have had a normal life expectancy

I'm a 50yo diabetic. It's diet controlled and I have no reason not to expect to live a good many years yet, but if I die from this I'll just be another 'older person with comorbidities'. It doesn't tell the full story.

pocketem Thu 23-Apr-20 11:49:50

Death certificates can have a primary cause of death and multiple secondary causes. For examples Alzheimer's is now widely reported as being the most common cause of death in the UK, but it rarely causes death on its own. But someone who has a heart attack or stroke listed on I(a) of their death certificate may also have Alzheimer's listed on part II, ie it contributed towards their death (by causing frailty, a delay in accessing help, and reduced chance of recovery) but not directly causing it

With coronavirus many doctors are listing CV under part II. It made things worse but didn't directly cause the death itself, which may have been precipitated by a stroke, MI or hip fracture etc

hamstersarse Thu 23-Apr-20 11:54:00


So if doctors are listing it under part II - are these cases counted in the stats that the government report due to coronavirus?

Are there cases where CV is listed in part I or does that not exist with this?

OP’s posts: |
DuLANGDuLANGDuLANG Thu 23-Apr-20 11:57:31

Random 80s death certificate that came up online, you can see the three contributing causes to the death in a list format. If the death happens in hospital the hospital will supply you with paperwork to take to the registrar. If the death happens outside of hospital a visiting doctor does the paperwork that you take to the registry office. In some circumstances the death has to be referred to a coroner for post mortem (and sometimes an inquest will follow - the only time I have done jury service has been at coroner’s court):

Sometimes the reasons for death can seem quite surprising and I believe you can query them?

When my mum died (in hospital, 15 years ago) her death (IIRC) was recorded as multi organ failure due to septic shock, caused by a perforated bowel.

That seemed weird because her bowel perforated because she’d just had her first chemo for a relapse of ovarian cancer, but as her ovaries were long gone, her ovarian cancer cells had attached to her bowel. The chemo killed the cells, damaging her bowel in the process.

If she hadn’t had chemo on the Thursday, she wouldn’t have died on the Sunday. If she hadn’t had ovarian cancer, she wouldn’t have needed the chemo, yet neither of these factors were entered into the statistical record for cause of death. Back then, ovarian cancer only had a 20% survival rate at 5 years post diagnosis, according to all the relevant cancer charities, but in the years since I’ve often wondered how accurate any of those statistics can really be, considering what I know about my mum?

(Ovarian Cancer was in the ‘other conditions’ box but who knows how these things are recorded and selected when statistics are compiled?)

Deaths in connection to AIDS have always reported as ‘AIDS related illness’ and I believe that’s a similar phenomenon to what we are seeing now - most AIDS patients will actually have died of something else, but if they didn’t have AIDS, the something else might not/probably wouldn’t have killed them.

According to this, currently globally, the leading cause of death in those living with HIV or AIDS is Tuberculosis:

I can’t find a quick and easy link of U.K. HIV/AIDS related deaths (thankfully it’s now a small data set) but a quick flick through a couple of studies suggests that cancer and hepatitis are probably the leading causes of death in this patient population.

TL:DR The way cause of death is decided is actually quite complicated and varied and that’s always been true, rather than being CV19 thing.
IMO it’s right that multiple causes are recorded, but it’s still surprising as to which 2 or 3 contributors a doctor will decide to record.

Here are the .GOV guidance notes for docs on recording cause of death (relevant screen shot attached):

DuLANGDuLANGDuLANG Thu 23-Apr-20 12:05:47

I suspect that in your example, statisticians compiling deaths from Pancreatic Cancer and statisticians compiling deaths from CV19 would BOTH claim the patient for their own data sets (so if you added up all the deaths caused by various conditions that total would exceed the number of total deaths because some people (most people?) would be recorded on multiple lists).

This is why the ‘excess deaths’ for the time of year is considered to be a more meaningful statistic for understanding the impact of CV19 on the population, even though it seems maddeningly imprecise!

hamstersarse Thu 23-Apr-20 14:44:07

Thanks guys... it’s complicated right?!!grin

OP’s posts: |
helpfulperson Thu 23-Apr-20 14:48:19

Yes, its complicated. And it varies from country to country which is what makes comparisons of statistics so hard.

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