Notes of a meeting of the Independent Elders held 7.8.17
1. Q & A with David Turner (newly appointed consultant in geriatrics and stroke at the National Hospital for Neurology and Neurosurgery and UCH, but here in an informal capacity as IARA member, friend and neighbour)
Most of the questions concerned mental rather than physical deterioration, starting with what to do when/if people become concerned about loss of memory. Unimportant memory lapses (eg what was the name of that actor … etc.) aren’t of concern but become so if they have more serious consequences and are happening often (leaving keys in the door, pan on stove etc.). Ask a GP to refer for a memory assessment, whicha is done by the Community Mental Health team. There is no one, accurate test for dementia (apart from a brain biopsy, which is rarely done and usually only for younger people) and dementia can take many forms but if it is diagnosed this can trigger help – various resources, home care etc. Important to continue to live at home for as long as possible – a familiar mental map helps to maintain independence even if there is some risk (recommended reading – Being Mortal, by Atul Gawande).
If you think someone is at serious risk, there is no family involvement and they themselves won’t seek help you can contact Social Services (Adult Social Care) to request an assessment and if someone is in denial but a serious risk to themselves they could be admitted and assessed under a Mental Health Section.
Geriatrics is a big area of medicine in the UK, and is valued (more than the US).
Family support for older people can be very important, and doctors encourage it – while acknowledging the need for carers to look after themselves and not burn out. It’s not unknown for patients to be admitted to hospital with no obvious need for medical care but a lack of home support. Unfortunately, respite care is not readily available and the change can upset the routine and health of those being cared for.
Technology is helping to keep people living independently – eg gait sensors which will pick up if someone is moving unusually slowly or not at all, and various alarm systems. Don had printed off details of a number of careline systems, which we circulated.
We had a discussion about how to help each other. Good idea to leave keys with a neighbour who can be asked to look out for anything unusual (eg curtains not pulled back) and should also be given contact details for next of kin (NOK) and GP. Don advocated for a database of information to be held centrally but there would be problems with data protection and maintenance of information. Less formal systems were generally favoured by the group.
The discussion moved on to end of life issues. David strongly recommended making an advance directive (living will) as without one the default position of doctors is to give life prolonging treatment. Giving a health and welfare Lasting Power of Attorney to a friend or relative won’t necessarily help with this issue – if you lose the capacity to make decisions yourself your attorney may opt for treatment even if you would not have wanted it (but have not given written instructions), and even if they don’t doctors may be reluctant to withdraw treatment without a written instruction. So make a directive, and give copies to your next of kin and GP. Make sure your NOK knows that if you lose capacity to make decisions, they need to give this document to any hospital based medical team that looks after you (they won’t necessarily have communicated with your GP).
A fairly new problem which medical ethics has not yet caught up with is that of tube feeding – it is now possible to stay alive for years with a permanent feeding tube so if you don’t want this to happen you can specify it in your directive. There is good guidance and a pro forma which covers all options at compassionindying.org.uk
If you still have mental capacity you can refuse treatment, food and drink but the current legal position is that there is no way doctors (or anyone else) can help you hasten death.
A question was asked about who decides if someone has mental capacity. David said that if it’s a health issue it would be a doctor; if it’s perhaps a financial question it might be a lawyer.
Many thanks to David for a very interesting and helpful session, and all good wishes for his new post.