After a death

Why is a post mortem being asked about?

Because examining the brain is the only way to confirm the diagnosis. During life, doctors can say that CJD is probable. After death, a post mortem examination, also called an autopsy, can confirm it, say which form it was, and show whether it was genetic. The US foundation describes it as a way to give the family the answers they need. The examination also supports public health monitoring and research.

It is a choice. In the UK, the doctor needs the permission of the next of kin, and the National CJD Research and Surveillance Unit and the National Prion Clinic will try to help arrange one, though it is not always possible. A coroner or procurator fiscal can require one in some circumstances. In the United States, the National Prion Disease Pathology Surveillance Center arranges brain only autopsies for suspected cases free of charge, including transport, and the legal next of kin signs the consent form. The Center aims to carry out the examination within a few days of death and says this usually does not delay funeral arrangements. Results go to the doctors named on the consent form, usually about three months later, and they discuss them with the family. Autopsy and brain donation explains the steps.

The next three steps

1. Decide about the post mortem, and tell the care team or hospital. In the United States, call the Surveillance Center on 216-368-0587 and ask for an autopsy coordinator. In the UK, ask the care team or the GP, who will contact the national services.

2. Tell the funeral director that the person had a prion disease. Funeral staff have guidance for this, and what applies depends on whether a post mortem was done. Where it was not, there is no reason relatives should not touch or kiss the person’s face. Where it was, relatives are advised to avoid that contact. The funeral director and the hospital can say what applies.

3. Reach for support. The CJD Foundation helpline is 1-800-659-1991 and the CJD Support Network helpline is 0800 774 7317. Hospice programmes that cared for the person often offer grief counselling afterwards, including for young children. Grief and bereavement and Support groups by country are the pages for this.

Questions that often come later

If the post mortem shows a genetic form, relatives may want to talk to a genetic counsellor. There is no hurry. Prion disease runs in my family is written for that moment. If the death has left you worried about your own exposure, I am worried about exposure is the page. And if the diagnosis was never confirmed and that troubles you, A doctor suspects CJD explains why certainty during life is hard. The Start here page lists every route.

For anything specific about the death, the examination or the paperwork, the care team, the hospital and the funeral director are the people to ask.