It is important that all of us with hepatitis C are made aware of what happens to us in the event of our death. The majority of people with hepatitis C may not actually die from any complications that arise from the infection, but hep C is classified as an infectious disease and there are a number of issues 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. People are not tested for hepatitis C as a matter of course when they die, but their status may become apparent from the way they died - for example, with end stage liver disease (ESLD).
However, if you die of something sudden at home, 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 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 or undertaker staff. This is a general health and safety policy with regard to all infectious diseases (for example vCJD, HIV, HBV).
The Health Protection Agency advises that when someone has died who is known to have had an infectious disease like hepatitis C, they are to place the body in a bag which may then be labelled with 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 exercise caution.
Usually a hospital will not actually advise the undertaker of the specific name of the infectious disease, only that it is “infectious” as it is their statutory duty to do so under the Health and Safety at Work Act.
Issues for your family to be aware of
It is 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. However, basic hygienic preparation of the body is considered safe by the HPA.
Relatives and friends should still be able to view the body even without embalming but this means that anyone wishing to view must do so soon after death. 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.