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RETENTION OF ORGANS, TISSUE BLOCKS AND SLIDES
This leaflet is aimed at those who had a close relative who was the subject of a post-mortem examination in Scotland before the end of the year 2000.
It is designed to help you better understand the nature of a post-mortem and to decide if you wish to investigate what happened in your particular case.
Post-Mortem Examinations
A post-mortem examination is an examination carried out on the body after death. There are two types: hospital post-mortems and Procurator Fiscal post-modems. A hospital post-mortem examination is the final step in the complete process of caring for patients. The main reason for wanting to undertake one is to help to confirm the accuracy of the diagnosis, identify conditions that may not have been diagnosed in life, or identify complications and side-effects of treatment or drugs. If the deceased left no views on the subject, or was too young to understand what was involved, hospital post-mortem examinations can only be carried out under the present law if the surviving spouse or relatives do not object.
The Procurator Fiscal is responsible for investigating all sudden, suspicious or unexplained deaths. This is separate from the Procurator Fiscal’s role in the investigation and prosecution of crime. If the Fiscal thinks a post-mortem examination is necessary, he or she can instruct one and does not need the authorisation of relatives.
Almost every post-mortem examination involves the taking of small tissue samples, known as ‘tissue blocks’. These are less than a quarter of an inch thick, and are embedded in wax or resin. From them, very thin slices are taken, 10 times thinner than a hair. These are placed on glass slides so that they can be examined tinder the microscope. These ‘slides, as they are known, are an essential tool in reaching a diagnosis. In some cases, it may be necessary to remove whole organs, such as a brain or heart, and retain them for a period of time so that a proper diagnosis can be made.
Organs, tissue blocks and slides retained at post-mortem examination can also be used for research and medical education. Research may benefit the individual family, but may also have wider benefits. Advances in knowledge, particularly of heart and brain diseases, rely to a great extent on the availability of these organs from post-mortem examination, For example, complicated abnormalities of the heart can be studied, to help surgeons deal with difficult cases in the future. None of this should happen without the full authorisation of the family, or in the case of an adult, either the person him or herself, or the person who is closest to them and who knows what the deceased’s wishes were.
When hospitals realised the distress some parents had suffered by finding out only much later what had happened to their child at post-mortem examination, they took steps to change their approach. These recognised the need for improved understanding between clinicians and relatives about the post mortem examination. These developments meant that by the end of 2000, new arrangements were in place in all of the hospitals in Scotland carrying out post-mortem examinations. The Crown Office and Procurator Fiscal Service have also reviewed their practices in relation to post-mortem examinations instructed by the Procurator Fiscal. Arrangements are in place to tell families, where possible, that a post mortem examination may take place, and that it may then be necessary to remove and retain organs for further tests. Unless the family objects to receiving information about the post-mortem examination, they will he told when an organ has been retained.
Review Group Recommendations
In October 2000, the Scottish Executive set up an Independent Review Group on the Retention of Organs at Post-Mortem. In the first phase of its work, it looked at past practice. In its second phase, it looked at changing the law. It also drew up a standard information leaflet on post-mortem examinations for use in all hospitals, along with a form for use across Scotland.
This leaflet takes forward two key recommendations made by the Review Group:
• that relatives should have every opportunity during a five-year period to reclaim organs retained under past practice, and the opportunity to do so should be made clear through sensitive advertising:
• that it should be made clear to families that they can authorise the use of retained organs or tissue for research or education, even if they do not wish to know whether these have in fact been retained.
While the Review Group did not question families entitlement to reclaim tissue blocks and slides as well as organs it felt that tissue blocks and slides formed part of the medical record, in much (lie same Way as X-rays. They therefore represent a resource which could be very important to the family in future and which it would be better to preserve. Given this, the Review Group recommended that blocks and slides would not normally be returned to families.
Options Open to Relatives
Each family will want to deal with the situation in the way that seems right to them. A wide range of choices is open to them:
• to do nothing;
• to seek more information before reaching a decision (see next section)
• to make their views known on the use of retained material for research, or education, or on disposal, without asking for information about whether anything was retained;
• to ask if any organs, tissue blocks or slides were retained and, if so:
• to authorise their retention, with or without conditions, for continued use in diagnosis, research or medical education; or
• to reclaim any organs, so that they can be disposed of, either by the hospital or the family.
Further Information
If you feel you need further information, you may want to:
• discuss the subject with other members of your family;
• talk it over with your spiritual adviser, or with someone such as a hospital chaplain or a local funeral director;
• visit the website which has been set up at www.show.scot.nhs.uk/sehd/retentioninformation where you can get further information without having to speak to anyone at this stage;
• contact the NHS Helpline on 08000 27 00 09;
• contact a support group - details are given at the back of the leaflet.
Indicating Your Views About Research on any Retained Material
You can do this by contacting the NHS Helpline on 08000 27 00 09 and:
• asking them for the number of the hospital where the post-mortem examination took place, so you can contact them direct You can also get the hospital’s number from the list of contacts on the website which has been set up: www.show.scot.nhs.uk/sehd/retentioninformation; or
• sending an e-mail using the website. It will be passed onto the proper hospital.
These decisions are up to you. No-one from a hospital will try to contact you. Your privacy will be respected at all times. Your wishes will be respected, whatever you decide.