The organ removal and retention scandals that broke in the late 1990s at Alder Hey Children's Hospital in Liverpool and the Bristol Royal Infirmary had profound repercussions for the whole NHS. When it was discovered that hospital staff had been retaining the organs of babies and children who had died, without the consent or knowledge of families, it pushed the issue of informed consent well and truly into the spotlight.
'Lessons were learnt from Alder Hey and Bristol,' says Sam Oakes (pictured), nurse specialist in postmortem consent at Leeds Teaching Hospitals NHS Trust. 'There are better ways of doing things and by taking on board these experiences we have been able to move forward.'
Ms Oakes has been a nurse specialist in postmortem consent for the past two years. Having previously worked as a staff nurse in neurosciences and a sister in the care of older people, she went on to become a practice development nurse and worked in organ retention before taking up her current post.
At present, Ms Oakes is the only nurse specialist in postmortem consent in the country, a role that was specially created following a successful trust application for government funding. Although the post has only been funded for three years, Ms Oakes has submitted a business proposal that she hopes will secure further funding to allow her to continue with her work.
'We have as much of a duty to care for the deceased as we do for the living,' she points out. 'And when you are dealing with the recently bereaved you sometimes have to work that little bit harder. It is about giving the family back some control over their loved one.'
Following the incidents at Alder Hey and Bristol, official inquiries resulted in an overhaul of the law and current practice on the removal and retention of organs and tissue. In April 2003, the Department of Health published Families and Post Mortems: A Code of Practice and devised new consent forms and information leaflets. The Human Tissue Act 2004, a framework for regulating the removal of, storage and use of human organs and tissue, comes into force this month, while the regulatory body, the Human Tissue Authority, has been set up to advise on and oversee compliance with the act.
Although some parents at Bristol and Alder Hey signed postmortem consent forms, it became apparent that they did not realise they were giving doctors permission to retain their children's vital organs. The major theme underpinning the new policies and guidelines is that of 'appropriate consent': explicit permission must be gained for a postmortem examination, including consent for the removal and retention of organs.
'Robust informed consent is vital if families are to really understand what happens at a postmortem,' stresses Ms Oakes. 'At a time when they are not really taking too much in, it is important to sit down with them and go through every single aspect so that they understand exactly what will happen and are comfortable with the decisions they make. Although it can be done by a doctor, I take consent because the process can be very lengthy. The consent form itself is six pages long and I am also there to answer any questions.
'Postmortem is a complex and obscure area that can be very confusing. I go into great detail about what will happen, from the incision that will be made to what will happen to the organs.
'If the brain is removed during a postmortem it is not put back into the skull but is placed in the abdomen. I make relatives aware of this because if they found out afterwards they may feel it is something they should have known prior to the procedure. Also if organs are to be removed, the family are fully aware and have given their consent.'
Ms Oakes meets with the families of deceased patients as soon as they have discussed the possibility of a postmortem with the doctor, and she is there to support and advise them throughout the process and to discuss any findings that result.
'I spend a lot of time with families as they try to decide what is best for them,' she says. 'And I can also ensure that any special requests are carried out. For example, when parents lose a child it is often very important to them that they are the ones who hand their baby over to the pathologist.'
As well as supporting families, it is also Ms Oakes' job to facilitate the implementation of the new code of practice, audit consent forms and liaise with pathologists and the mortuary. She also recently admitted a successful proposal to secure funding for the refurbishment of the mortuary viewing facilities.
Education and training are also important aspects of Ms Oakes' job, particularly focusing on educating doctors in how to approach families and obtain informed consent. 'The ethos has changed from asking relatives if a postmortem can be carried out to offering one - it is about giving back control. If a clinician feels that a postmortem should be carried out they contact me and we discuss the details.'
Although it is a very new role, Ms Oakes has had lots of positive feedback from families of the deceased she has worked with. 'I have been told that if they didn't have me to talk to they wouldn't have known who to turn to. It is very gratifying to know I have helped families phenomenally. Ultimately I am an advocate for their loved one and it gives me great satisfaction to know that I have been able to help them move on with the grieving process.'
How do I become... a nurse specialist in postmortem consent?
This could be for you if: you are interested in working with bereaved families, enjoy teaching and have an interest in pathology.
You need to be good at: bereavement support, have excellent communication skills and be able to work autonomously as well as part of a close-knit team.
You need to have: experience of working with the bereaved and in a pathology environment, a teaching and assessing qualification and have previously held a senior clinical role.
You don't need to have: previous direct postmortem experience.
Other similar jobs you could consider: bereavement or nurse counsellor, transplant coordinator.
Where to find more information: to find out more information and download a copy of Families and Post Mortems: A Code of Practice, you can visit the Department of Health website at www.dh.gov.uk where you can also access information about the Human Tissue Act 2004 and the Human Tissue Authority. For advice and information about bereavement you can visit the National Bereavement Partnership's website at www.natbp.org.uk/home.shtml.
VOL: 102, ISSUE: 17, PAGE NO: 58