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Following recent controversy regarding organ retention and other aspects of autopsy procedure, it has become clear that a new approach to discussing autopsy with parents is required. In general terms, this will involve the provision of more detailed information to families who will need to make important decisions regarding the extent of the examination and the fate of any organs removed during the procedure. After consultation with hospital staff, government bodies and parent support organisations, new consent forms and a parent information booklet have been produced.

The need to talk with a family about autopsy arises at a time of great distress. Parents need to know exactly what is involved in an autopsy examination so they can make important choices. A Post Mortem Family Information Booklet is available as a resource for parents but it does not obviate the need for a full verbal explanation of the reasons an autopsy is recommended and the procedures involved. A senior clinician involved in the care of the child should be responsible for speaking with families about autopsy.

Decisions are required regarding

1.  the extent of the examination
   • Full autopsy
   • Limited autopsy
   • External examination
   • No autopsy
     
     
2. what is to be done with any organs removed during the autopsy
   • restored to the body prior to burial or cremation
   • hospital to arrange respectful, lawful and dignified disposal
   • family to arrange respectful, lawful and dignified disposal
   • hospital will retain the organs for teaching and ethically approved research purposes

Steps in the consent process

Prepare for the discussion with the family

Is an autopsy required? Are you able to clearly articulate the reasons?

What are the questions you seek to answer?

What are the questions the parents seek to answer?

What type of examination is required?

• Full
• Limited
• External Examination

Is now the best time to discuss this with the family? It may be helpful to liaise with the social worker or nurse caring for the family.

Ensure you have the knowledge and skills to talk with the family about autopsy?

You will need to know what procedures are involved in an autopsy and what options are available to the family.

If not, speak with someone who can help

The Parent Information booklet also contains helpful information for staff

Allow sufficient time and privacy for the conversation

It is generally helpful to have another member of staff present ie. nursing or social work

Provide the family with the Post Mortem Family Information Booklet.

These are available

• On wards
• Through the Nursing Coordinator
• Through Laboratory services ext 5919

Discuss with the Family

• Why you believe an autopsy would be helpful
• What type of autopsy examination you are recommending and why
• What is involved in the procedure
• The fact that if the brain is examined, a two week period is required.
• What arrangements are to be made regarding organs that are examined
  • restored to the body prior to burial or cremation
  • hospital to arrange respectful, lawful and dignified disposal
  • family to arrange respectful, lawful and dignified disposal
  • hospital will retain the organs for teaching and ethically approved research purposes
• The fact that sometimes, even an autopsy cannot answer all questions

Provide opportunities for the family to ask questions and meet with you again.

The Forms

12-19 week (non-registerable) pregnancy loss

Stillborn Baby (where the Birth must by Law be registered) where an infant is born without signs of life at a gestation of 20 weeks or more; or, where the gestation is unknown, weighing 400g or more

Neonatal Death  (where the Birth & Death must by Law be registered) where a live born infant dies within 28 days of birth regardless of gestational age at birth. A live born infant is one who, regardless of gestational age or birth weight, shows any sign of life (heartbeat, respiration) after birth.

Death of an Infant or Child (Infant: where the death occurs within one year of birth, but after the first 28 days of life. Child: where death occurs after the child's first birthday and up to, but not including, the 15^th birthday)

Death of an Adult where the death occurred in a person aged 15yrs or older

Each form contains a front page and a page for each option ie.

• Full autopsy
• Limited autopsy
• External examination
• No autopsy

You and the family will need to complete the front page and one of the above, depending on the family's decision. You will need to do this twice. One copy remains in the Unit Record. The other is given to the family. It is important that, if an autopsy is recommended, and consent is declined, this is documented.

The Pathologist

The outcome of the autopsy examination is very dependent on the quality of the information provided. Try to

1. Define the questions you and the family wish to have answered.
   
   
2. Provide a detailed summary of the clinical history
   
   
3. Speak with the pathologist
   
   
4. Attend the autopsy or a demonstration of the major findings

You can use this form to communicate with the pathologist  (PDF 60KB)

Followup

Most families benefit from having the results of the autopsy examination sensitively explained to them. A copy of the report should be offered. This should form part of the overall bereavement care plan for the family. Close liaison with other members of the team responsible for follow-up will help determine the optimal time and method for provision of medical information.