The clinician caring for a loved one with suspected CJD will usually discuss with the family the option of consenting to a brain only autopsy. The decision is a personal one and it is important that the next of kin is comfortable with the decision they make. What is right for the family is the right decision.

Medical staff in collaboration with social work staff can work with the family to explain the need for the autopsy so that the family can achieve a confident diagnosis and understand what has happened and that what this means is very important. Too often families regret the decision not to have an autopsy which was taken at the time because the approach for consent was an unpleasant experience.

If the Next of Kin is opposed to an autopsy and has made that decision clear then it is important that decision is respected regardless of the views of other family members or medical staff. The suggestion of the storing of a blood sample is a good alternative if other family members are concerned about the possibility of genetic CJD.

Some important points that support consent of an autopsy:

  • Diagnostic tests for CJD while the patient is living are improving in accuracy but the examination of the brain during an autopsy is the best way to obtain a definite diagnosis of CJD and to provide the family with conclusive answers. CJD is a notifiable disease, so it is also important to have a correct diagnosis of CJD for surveillance and research purposes. The more that is understood, the more this will benefit future families. There are also ramifications for family members in regard to the CJD infection control guidelines so it is important to establish whether the patient was suffering with CJD or another disease. 
  • If an autopsy rules out CJD in a suspected patient, then that family will not have to live with the ongoing ramifications associated with CJD. If there is no autopsy, then the same family will be left with a clinically suspected diagnosis of CJD and will be treated as if there is a definite diagnosis of CJD confirmed by autopsy. First and second degree relatives will be deferred from donating blood and family members may face infection control issues and discrimination when accessing health care. Screening questionnaires during pre-admission to hospital or attendance at other facilities, asking if a family member has died of CJD, are becoming more common.

What the autopsy results provide for the family

The results will confirm whether or not the patient died of CJD and can confirm a diagnosis of CJD as opposed to variant CJD. It will not inform the family if their loved one died of sporadic or genetic CJD. Once CJD is confirmed by brain autopsy examination then the family can choose to consent to a genetic test on the patient’s DNA from either tissue or a blood sample that has previously been stored, to establish or rule out a genetic cause.

NB: The CJD Support Group Network encourages families to request a blood sample taken in life so that DNA can be extracted and stored for future testing if/when required.

Frequently asked questions

Is there a cost involved for the family who consent to an autopsy?

Families will not be charged for autopsies and transportation costs will be met by each individual state health department.

What is the average time until families receive the autopsy results?

This will vary from state to state but families should not have to wait more than 2 to 3 months for the results.

Who will provide the next of kin with the autopsy results?

The results will go to the clinician who was involved with the family and signed the autopsy consent papers. As the family is not always in communication with that clinician, or the clinician may have moved on, results are not always relayed to the family causing additional stress and extended delays. it is advisable for the family to add the name of a family doctor on the consent papers to also receive a copy of the results.

Can they still have a viewing?

When the body of a suspected CJD patient has not undergone a brain autopsy then standard precautions apply for viewing and an open casket.

If the body has undergone a brain autopsy then a higher level of precautions are required so it is recommended that viewing occur prior to the autopsy. If the family want a viewing or an open casket after the autopsy this should not be prohibited according the revised CJD infection control guidelines but appropriate reconstruction may be difficult to organise. Families are also advised to avoid superficial contact with the body after a brain autopsy if there is an open casket.

CJD Infection Control Guidelines

Will there be a delay in funeral arrangements?

There should only be minimal if any delay. Delays usually arise due to body transport and/or actual performance of the autopsy. Each state health department has made an agreement with the Commonwealth Department of Health to cover the cost of transporting the body to the nominated morgue to try to reduce delays and to encourage autopsies.

What documents need to be completed?

The clinician caring for your loved one will discuss the autopsy and provide the necessary consent papers that will need to be completed by the Next of Kin if the family is agreeable to an autopsy.

Who should be involved in the decisions with the family about the autopsy?

The Next of Kin needs to sign the consent form for the autopsy. There can be a conflict of ideas amongst family members but the person who is legally recognised as the Next of Kin has the final say. Families should be prepared and given time to discuss this so that a mutual decision can be hopefully agreed upon. It is imperative that the family receive the correct information from their medical staff and any additional emotional support from a social worker or an appropriately qualified health care worker trusted by the family during this time.

Who is the next of kin?

  1. Spouse
  2. Adult Offspring
  3. Parents
  4. Adult Sibling