This is usually raised either shortly before a death or soon after one, and it is a lot to take in at that point. The decision belongs to the next of kin, and there is no wrong answer.
What is being asked?
Permission to examine brain tissue after death. Doctors call it a post-mortem examination or autopsy. In suspected prion disease it is normally brain only, not a full examination of the body.
Why might a family say yes?
Four reasons come up in the UK recommendations for CJD care published in 2026. It can confirm the diagnosis, or rule it out. It can show which type of prion disease it was. It can provide tissue for genetic testing if a blood sample was not taken while the person was alive, which may be important to relatives later. And it can provide tissue for research. A family’s own wish to know for certain is treated as a good enough reason on its own.
Scans and spinal fluid tests have improved, so fewer families are asked than used to be. That also means a post-mortem is now more often about certainty and research than about reaching a diagnosis.
Does it cost anything?
In the United States, no. The National Prion Disease Pathology Surveillance Center arranges the examination and pays for it, including the testing and transport between the funeral home and the autopsy site. It does not pay funeral or embalming charges. The centre needs the consent form signed by the legal next of kin before it can make any arrangements. Families or doctors can reach its autopsy coordinators on 216-368-0587, with an out-of-hours line on 216-647-8148.
Elsewhere the route runs through the hospital and the national prion service, and arrangements differ by country. Your care team or a support organisation can tell you how it works where you are.
Will it delay the funeral, or stop us seeing him?
Usually not. The US centre aims to complete the procedure within one to three days of death, says an examination a few days after death does not harm the tissue, and states that it does not normally delay funeral arrangements. Weekends and public holidays can add a day or two.
The centre also states there is no scientific or medical reason to prevent embalming or a full viewing. Individual funeral homes make their own decision, and its coordinators will talk to a funeral home that has concerns. In the UK, the official guidance set includes an information sheet written for funeral directors and relatives, which is worth asking for if you meet hesitation.
One practical point from the 2026 recommendations: if you want to see or touch the person, it is better to do that before the examination, because appearance can change afterwards.
When do we hear anything?
Results take time. The US centre releases final reports at about three months, and they go to the doctors named on the consent form rather than to the family directly. Those doctors are expected to go through the findings with you. Ask at the time who that will be, and write the name down.
What if we do not want this?
Then it does not happen. Consent is required, and declining is a complete answer that needs no justification.
More detail covers consent wording, tissue retention and research use. Caring for yourself and support groups are there for the days around this decision, and brain and tissue banks describes where donated tissue goes.
Sources for this page
- National Prion Disease Pathology Surveillance Center: autopsy coordination program
- Ng M and others. Multidisciplinary recommendations for palliative and supportive care in Creutzfeldt-Jakob disease and related disorders. Age and Ageing 2026;55(7):afag206
- GOV.UK (DHSC): Minimise transmission risk of CJD and vCJD in healthcare settings, guidance from the ACDP TSE risk management subgroup