Bereaved parents not given informed choice over post-mortems

Grief-stricken parents whose babies have died are not being given an informed choice when deciding whether to have a post-mortem that could reveal why their baby died and help doctors prevent it happening again, according to campaigners.

More than 6,500 babies in Britain die just before, during, or soon after birth each year.

Most parents refuse to allow post mortems to be done.

Yet a third (34 per cent) can spend a lifetime regretting it – with unanswered questions over why their baby died - says Sands, the stillbirth and neonatal death charity.

This equates to more than 1,400 parents a year.

Post mortem rates for stillbirths fell from 55 per cent in 2000 to 45 per cent in 2009, while those for neonatal deaths fell from 29 per cent to 18 per cent over the same period.

Bureaucratic forms and an unwillingness of doctors to tackle such a distressing subject have contributed to a significant drop in post mortems over the past decade.

The downward trend was prompted by the Alder Hey Children’s hospital organ scandal of the late 90s. The discovery that thousands of organs had been removed from babies had a major impact - putting parents off post mortems, despite it being illegal since 2006 for hospitals to remove and keep organs without specific consent.

At present, many hospitals have long and complicated forms that make doctors reluctant to even broach the issue of whether parents would like a post mortem done, let alone expect traumatised mothers and fathers to fill out pages and pages of paperwork, say campaigners.

The current situation, where there is no consistent form or guidance, has “become a barrier” to consent, according to Dr Alex Heazell, from the University of Manchester’s Maternal and Fetal Health Research Centre.

“The quality of the consent process is an important factor in increasing post mortem rates which is why this new package is so urgently needed,” he added.

Sands has spent two years developing a post mortem consent package which is being launched tomorrow [Mon 21].

A new two page form, developed in consultation with parents and doctors alike, avoids going into unnecessary and gruesome detail of the precise process of a post mortem. Guidance has been produced to encourage doctors to discuss the issue, and information has been produced for parents that strikes a balance between informing them of their options and overloading them with detail that could add to their distress.

The charity hopes that making the process simpler could help increase the confidence of parents in agreeing to post mortems – and see the rates increase - something that could provide valuable information to researchers working to reduce future deaths.

Approved by the Human Tissue Authority, with backing from the Royal College of Pathologists, the Royal College of Midwives, and the Royal College of Nursing, it aims to make it easier for parents to consider their options.

Professor Peter Furness, former president, Royal College of Pathologists, commented: “The death of a child is almost the worst thing that can happen to a parent. I say ‘almost’, because surely it makes it even worse not to know why. It is worst of all to have a second child die, knowing that the second death could have been prevented if only the first death had been investigated properly.”

Alix Henley, co-author of the Sands post mortem package, said: “This is about trying to get everyone to have the opportunity to have a post mortem, so that whatever decision that they make is an informed one.”

And Baroness Diana Warwick, Chair of the Human Tissue Authority, commented: “When a baby dies, it is an enormously distressing time for the family. It is important that the best possible information about post mortem examinations is offered to parents so that they can make an informed decision about whether it is right for them.”

Case studies

Refused to have a post mortem and has no regrets

Tanya Beck, 33, from East Sussex

She was 26-and-a-half weeks pregnant when her daughter Rachael Olive was born on 20th June 2002. Rachael could not breathe properly and died a few hours later.

“I was asked if we wanted an autopsy carried out before she was actually pronounced dead. Perhaps that’s what made me recoil in horror - I was still holding her! ...I knew that an autopsy meant cutting up the body - that’s all. I didn’t know what it was for or why it would be beneficial (or not.) I wanted her to be at peace.

We had some bloods taken for genetic testing instead.

I have been diabetic from the age of 3, and this seemed to be the fall-back ‘excuse’ for her short life... time and time again I was told by various medical experts that her problems were caused ‘probably because of the diabetes.’

...I have been a befriender with Sands for nearly a decade. I have met countless people who have been through the post mortem process only to find it upsetting or that it simply raises more questions. Most - in my experience around 8/10 people - never find the cause of death from the post mortem. It’s such a long process which is most often delayed time and time again, with feedback that consists almost entirely of medical jargon, with no real answer at the end. Most of all, a post mortem can rarely guarantee that there will not be another tragedy. For this reason I’m glad we refused it, albeit for lack of information at the time. She was buried whole and beautiful, as I remembered her. I wouldn’t change a thing.”

Decided to have a post mortem

Dharmistha Patel, 30, from Surrey

Agreed to a post mortem done after her daughter Amaari was stillborn in 2010.

“Making a decision to have a post mortem wasn’t easy for me and my husband, the thought of putting our little girl through any more than what she had been through already was tough. We spent a long time going through the paperwork trying to make sense of all the different options available at what was a very distressing time.

When we were told about the post mortem initially I had said to my husband that I didn’t want one, because we were told we didn’t have to make a decision right away I did eventually change my mind, and I am so glad that I did. When we got the results of the post mortem and after we found out that there were no developmental or genetic issues with Amaari, it gave me and my husband hope for future pregnancies. We then knew there was no reason why we couldn’t have a perfectly healthy baby if we decided to.

Most important of all was the post mortem was a chance for us to get some closure. We both needed to know why and what had happened to our little girl when I had such a normal pregnancy and was full term. The doctors had warned us that we may not get answers form the post mortem but there were so many unanswered questions, ifs, buts, whys etc... that we felt like we just had to go ahead with it.”

Refused to have a post mortem and regrets it

Laura Mongiovi, 33, from Wolverhampton

Her son Alfonso died little more than 20 minutes after he was born in 2006, from a rare condition called vasa previa, which affects the blood vessels in the umbilical cord.

“We were given the personal opinion of the consultant on the day of Alfonso’s death which led us to believe that there was no need for a post mortem...Just hours beforehand we had been told our first baby had died, we were in no fit state to make decisions so we trusted this man and declined a post mortem. It does make me angry knowing what should have been done. A post mortem would have clarified and verified everything he told us but instead we are left wondering almost.....what if? We trusted someone in a white coat and at our weakest and most vulnerable led us to feel what we were doing was for the best. We were given no leaflets or any information. After we were asked and declined it was never brought up again.

...If a bereaved parent asked me what to do I would simply say that if there’s a tiny doubt in their mind that they should have one or if they feel they don’t want one, to read the literature and speak to a professional to help them make that decision and that it be the right one for them. This decision after all is for life. Along with all the pain we go through and the grief we feel, to know deep down that we make right decisions regarding certain things, such as a post mortem, is one thing we don’t have to battle with and bully ourselves with ‘what if?’ and ‘I wish we had/hadn’t’ which I am at times left wondering.”