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From the outset, you should be aware that I am one of 'those' family members who has personally been affected by organ retention.
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I find the continuing references to the 'body parts scandal' quite unnecessary. It is true that there have been scandals relating to the retention of organs without consent at post-mortem examination, which have been brought to the public's attention over the past 10 years. But if we continue to use such derogatory terminology for what was for many families a very distressing experience, we will not come to an understanding of each other's position.
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It is of paramount importance that families receive the information they need to make informed choices - or in the case of a coroners' post-mortem, where they have no choices in the first instance, that they are fully informed of the process involved. Also, we (the general public) need to understand why it is so vitally important to retain tissues.
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I should point out that my focus is very much on issues surrounding post mortems, not surgical tissue. Most people, I believe, feel differently about surgical tissue than they do about post mortems, as they give consent for the treatment that they receive and are informed of the process. Also, feelings about the living are less emotive; decisions are made from free, informed choices, and the patient has the opportunity to ask questions.
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Why is a change in the law so important to families? The new Bill will provide an opportunity to rebuild trust in the highly skilled, dedicated and trained professionals who are encompassed by the Bill's remit. One thing the Bill cannot do, however, is communicate with relatives. This has been a major problematic area, but it will be written into codes of practice such as Families and Post Mortems, as one of the essential elements of the doctor/patient relationship. In many of these cases, the doctor may not even get to see the family at the time of post mortem. Families have felt let down and some feel deceived. This must not be allowed to happen again; there must be systems in place to provide a proper service.
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It is essential that more families have the opportunity at the time of their loved one's death to be informed of how their loved one died. They also need access to information and it must be made clear that the doctor who is performing the post mortem is doing it primarily for the benefit of the family. The family must also know that lessons can be learned from post mortems; some families may find comfort in the fact that something has been learned, which may help others, from the death of their loved one.
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Broadly speaking, as a family member, I am pleased with the helpful proposed legislation, which ensures that families whose loved one has to undergo a hospital post mortem can be assured that proper consent, backed by comprehensive information, will allow them choice, and the opportunity to donate organs and/or tissues as a 'gift'.
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Families whose loved one has to undergo a coroner's post mortem (to ascertain a cause of death) will also be provided with more information and improved communication, and will have the same opportunity to donate for teaching, training and research purposes once the coroner has completed his duties.
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The new Bill is necessary, not only in light of past practices but also because of modern attitudes to death and access to information. There are continuing reviews by the Department of Health, seeking ways to update and improve practice, which incorporate input from both professionals and the public. These are based on an acknowledgement by all that practices can be improved. The Retained Organs Commission helped to identify the national picture after past practices came to light, and gave a voice to those affected by issues relating to human tissue; it assisted with the resolution of many cases, too. The proposed Human Tissue Authority is also very important to families, who hope that the Authority will be truly representative and effective.
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I am still concerned about whether provision in relation to existing holdings is sufficiently detailed - and worried that this area might potentially be exploited. We should note that the proposed measures do strive to ensure that the errors of the past cannot happen again. At the inception of the National Committee relating to Organ Retention (a voluntary organisation representing families that I previously chaired) we quoted the chief medical officer's statement of 'never again', and we worked with those two words in mind.  We note that good practice is already in place and will be standardised, and that where it is lacking it will become mandatory as soon as the Bill is passed.
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Again, I acknowledge that good practice is already in place, and I would not wish to hamper progress. James Underwood, president of the Royal College of Pathologists, has argued that the Bill 'may place new but unwarranted restrictions on using surplus tissue from living patients for harmless and beneficial purposes' . With fully informed consent, however, this should not really be an issue. The New Human Tissue Bill should remove damaging judgements on pathologists.
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During the organ retention debate in the House of Commons on 23 April 2003, Hazel Blears, MP for Salford, said: 'Families must be at the heart of our policy.' This must continue to be the case. Families must also work with professionals, in partnership, which will help to re-establish trust.
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John Reid, secretary of state for health, said: '[I]t was a tragedy for the families affected, unacceptable, and took place within weak legislation. This legislation will ensure that this does not happen again. Under the Human Tissue Bill, no one, except with the coroner's authority or criminal investigation, will be allowed to retain organs or tissue without patient or relatives' consent. It's an example of this government listening to the public - promising to act on their concerns - and delivering.' Sir Liam Donaldson said: 'This Bill reflects the commitment that parents, families and professional groups have shown in working with the Department to ensure a solid framework for the future and to put right the problems and failings of the past.'
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The quest for standardisation of coronial practice nationally will not be achieved under this Bill, except in relation to the use of tissue after the coroner has completed his work. The Home Office is currently addressing this issue.
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I read Peter Furness's contribution to this debate with interest. He and I have been sparring partners on a number of occasions. I understand his stance, but would challenge a couple of points. He quite rightly states that those of us affected by the 'scandals' are concerned with post-mortem tissue. But the delivery of information to families is key, as is terminology and the families' or patients' need to understand what 'tissue' really means. Those of us who do not have a scientific background may have very different ideas to the professionals - during evidence given at the Bristol Royal Infirmary Inquiry, some families referred to tissue as something 'you blow your nose on'!
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I agree with Furness about the importance of research; but I believe that with proper communication and information, and without a huge increase in the day-to-day workload, patients can still be informed of what is likely to happen with their tissue, and most would be happy to aid medical advancement.
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I do not propose to debate consent with Furness, as there are not enough hours in a day. But on the question of 'How much information is necessary?', I would say: as much as it takes, and it will vary from person to person. Wouldn't you want to be informed to an extent that you had enough information to understand what was happening, and to make a choice? I have great respect for the statements made by many pathologists, and I have absolutely no concerns about the requirements of the draft Bill in relation to post-mortem tissue.
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Reading Kirstine Knox's contribution was humbling; it located the patient at the heart of the process and acknowledged the need for communication and information while pursuing the advancement of research.
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I have learned much over the past nine years, having been thrown into circumstances beyond my control. I have learned that pathology is a skill and an art. Many of the people who work within the specialism are dedicated and hardworking individuals, but sadly their work is not widely known about nor understood outside their direct or allied professions. A Royal College booklet calls it 'the hidden science that saves lives'. This must change.
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Our son had a post mortem 11 years ago; it was not until eight years ago that I actually knew what that meant. At first I was saddened to think that someone had taken Daniel's heart without telling me - but once somebody took the time and trouble to explain to me 'why', and to explain that lessons may have been learned through examining his heart, I considered it a privilege that our son may have contributed to helping another chid with a similar condition.
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Michaela Willis is chief executive of the National Bereavement Partnership.
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