The BBC report the case of 81 yr old Brenda Grant who was kept alive for 22 months by artificial feeding, against the instructions in her Advance Decision, (AD), because the AD had been mislaid in her medical notes.

The case is horrifying. People write ADs in order to refuse treatment at the end of life, and hence hasten their death, if and when they are no longer able to communicate effectively themselves. There are many important points about this story:

• Some UK healthcare processes do not take sufficient care to ensure that a person’s AD is recorded and honoured appropriately. This case should act as a warning to healthcare administrators to ensure they have systems in place to make the AD process work as intended. An AD to refuse treatment is legally binding on healthcare professionals.
• The case should encourage others, who suspect a relative’s AD has not been honoured, to take legal action. Such cases are very important to put pressure on NHS administrators and care home operators to ensure ADs are handled appropriately.
• In practice, at present, it seems that having a relative or friend who can act on a patient’s behalf to ensure that the AD is followed is highly desirable. MDMD Coordinator Phil Cheatle says: “My personal experience with my mother and my aunt, (both of whom had advanced dementia at the time), is that without me physically taking a copy of their ADs to the hospital every time they were admitted, and ensuring that the doctors were aware of them, the documents would have been ignored. Once doctors saw the AD, I generally found them very helpful in restricting treatment. In my aunt’s case, the consultant stopped all life-preserving medication immediately, in accordance with her wishes expressed in her AD. Without my intervention this wouldn’t have happened.”
• It appears that Brenda Grant had not given a copy of her AD to her children. Similarly it had not reached her nursing home. It was only when her GP discovered the AD that artificial feeding was stopped… 22 months later. The lesson here is clear – give copies of your AD to people who you can trust to act for you, possibly formally appointing them as a Power of Attorney for Health and Welfare. Make sure that the people you trust know that they need to personally show the AD to nursing homes, hospital doctors and other healthcare workers. The system does not always work automatically.
• The problem may be of particular concern in A&E departments. How many patients are given emergency life-saving treatment which they state clearly in their AD that they would wish to refuse? It seems that we need processes for ADs, to ensure they are checked at the early stage of hospital admission, similar to the DNAR processes. In the meantime, perhaps the best thing to do is to discuss your AD with your doctor and, if appropriate, ask them to write a DNAR order for you.
• A particularly telling aspect of this story is that Brenda Grant is reported to have made her AD because she feared degradation and indignity more than death after seeing her mother lose independence through dementia. Many MDMD supporters share this concern, which is quite understandable now that dementia is the leading cause of death in England and Wales. This is an example of why MDMD campaigns for an assisted dying law which is not restricted to those who are within six months of dying and who have sufficient mental capacity at that time. Such a law would be very unlikely to help anyone dying of dementia, which can lead to prolonged degradation and indignity.

If you haven’t written an AD and given copies to your doctor, and to people you trust to act for you, MDMD strongly recommend that you do so. Despite this case, ADs are an essential part of end of life planning. For further information on Advance Decisions and Power of Attorney for Health and Welfare, see our page on Advance Planning.