What happens when you die

It is important that all of us with hepatitis C should be made aware of what happens to us in the event of our death and although it is unlikely for the majority of people with hepatitis C to actually die from any complications that arise from their infection.

However because hepatitis C is classified as an infectious disease there are a number of issues it is important for you and your family to be aware of.

In many cases your HCV+ status may not come to light or be declared when you pass away.  For example people are not tested for hepatitis C as a matter of course when they die, their status may either become apparent from the way they died – for example, with end stage liver disease (ESLD) or, if you die of something unrelated or sudden – for example a heart attack, then an autopsy will be required. 

The autopsy might reveal liver damage in which case additional tests may be run by to establish the cause of that.  Your status may also be revealed by your medical records if they are examined in the course of determining the cause of death.

In some cases an actual diagnosis may not come until after death, given that many people living with hepatitis C are unaware that they have it.

Special arrangements by undertakers in dealing with infectious diseases

Irrespective of our state of health in life, all of us with hepatitis C (including those who have had successful treatment) will be treated with extreme caution by those who take care of us in death if our hepatitis C status is known to mortuary and/or undertaker staff.

All those who die with infectious diseases (for example vCJD, HIV, HBV) are treated extremely cautiously by undertakers and morticians to ensure their own health and safety.

They are advised by the Health Protection Agency to ensure that where someone has died with an infectious disease like hepatitis C, they are to place the body in a bag which is then labelled in one of the following ways – eg yellow and black “Biohazard” tape and/or with tags stating “Infectious Disease” or “Danger of Infection”.

This is to ensure that care is taken when transporting the body and to warn anyone responsible for handling it to take extra care.  Usually a hospital will not actually advise the undertaker of the specific nature of the disease, only that it is “infectious” – indeed it is their statutory duty to do so under the Health and Safety at Work Act - however, this does not mean that this will always happen and we have heard from someone on the helpline where this confidentiality was apparently breached.

Issues for your family to be aware of

It is extremely unlikely that an undertaker will agree to embalm or prepare a body that is known to have hepatitis C.  Certainly they are advised not to by the Health Protection Agency.  Aside from preserving or enhancing the look of the body, this rule also extends to dressing the body in particular clothes, applying make-up, combing hair etc.   

They will allow relatives/friends to view the body but without embalming or even basic hygienic preparation the body is likely to deteriorate rapidly.  This means that anyone wishing to view it must try and do so very quickly.  It is important to be aware that the body will remain in the sealed bag even when it is placed into a coffin and therefore relatives/friends may well have to take responsibility to open the bag themselves if they want to view it and/or if they want to prepare the body themselves (washing, clothing, combing hair, putting on makeup etc).

Lastly, when people have died of infectious diseases such as hepatitis C their coffins will be hermetically sealed to prevent any future possibility of infection to others – no matter how remote that possibility will be.

Whilst it is difficult to consider all this happening in the event of our death it is important for us to perhaps pre-warn our family and friends of what will happen when we do. 

We contacted both the National Institute of Embalmers and the British Institute of Funeral Directors who confirmed that these were indeed the guidelines they recommended to their members.  They said that some undertakers may be willing to prepare a body, despite it having an infectious disease, but that this was likely to be extremely unusual.  However, they would always endeavour to track down an undertaker to do this on a family’s behalf, but this may well mean significant extra cost if that undertaker is not local and neither could they provide a guarantee that they would be able to find someone.

Therefore, for those of you concerned about what will happen to you, it may be worth you considering contacting your local undertakers to see what their stance is on this and whether they will be sensitive and sympathetic to the needs of your family in the event of your death.