May 2010 – Key Decisions Made On The Care Package And Carol’s Advanced Directive

A meeting with Lou from MNDA on 14^th May set the next list of actions in motion and also opened up some areas for discussion that Carol had not previously wanted to talk about. It’s probably fair to say that sitting next to Annie in hospital had started Carol thinking about her own future and there were some things she was now willing to look at. Lou discussed everything with us that day and Carol started to talk about the support that carers could provide and then gave us her first thoughts on end of life choices. Over the next month both of these would be in place:

Care Package – Lou referred Carol to the local Community Matron (Amy) and we met with her to discuss Carol’s current situation and what may be required going forward. Amy was (and has continued to be) fantastic in helping us to sort this key area out and keep everything going so smoothly for so long. Within a week we met with the Community Care Team Lead (Sheila), who Carol had actually worked alongside during some of her nursing training placements, and arrangements were put in place for a full package of care to support Carol (and me) each day. The local team of Healthcare Assistants were brought in and so began our now long standing relationship with Keeley, Lisa, Lisa, Michelle, Rhonda and Sue. These ladies are quite superb in everything they do for Carol and I can’t stress enough just how much their help and support is appreciated. We’ve come to rely on them quite heavily and nothing is too much trouble, I really couldn’t do this without them. Additional support is also provided by their colleagues in the District Nurses team who help Carol with the medication and acute care side of things – again huge thanks are due to Bel, Gemma, Helen, Jackie, Liz, Mary, Sheila and Trish – and these are some more of the ladies Carol actually worked with during her training. While I’m passing on my thanks I must also include the Teams’ Manager Lucy and Carol’s GP Dr Anderson for everything they’ve done and continue to do for Carol and the family.

Carol’s care package has evolved over the last 18 months and currently involves 3 visits per day Monday – Friday (morning / lunchtime / evening) with additional morning and evening visits at weekends. This is delivered primarily by the Healthcare Assistants with the Nurses supporting as required (daily at present due to the syringe driver – but more on that later). This package of care provides us with peace of mind and high quality support for Carol’s daily needs – and this is very much appreciated by Carol and the whole family.   

Advanced Directive – previously I’d had no idea what one of these was but Lou explained that it’s about making your personal choices for end of life care clearly understood should you be in a position where you will need assistance. Lou talked us through some of her experiences and listed a range of options that Carol may want to consider. As I said this had been a taboo subject up to this point – Carol had not mentioned it and I’d steered clear of voicing any notion that I’d thought that far ahead (even though I obviously had – it’s impossible not to). Maybe it was sitting at Annie’s bedside that changed Carol’s mind – or maybe it was just the right time to have this conversation. Lou had all the paperwork sent to us and we also met with Dr Anderson to discuss Carol’s thoughts on the subject. This was always going to be Carol’s decision to make – whether anybody else had an opinion, or wanted to have any input, this was about Carol making her choices and everybody else accepting them. Selfishly for me this was also a huge relief - Carol would make these decisions which meant that I wouldn't have to.

When Carol asked me to start filling in the form it was surprising just how many decisions she’d already made. An Advanced Directive is an official document that needs countersigning by your GP but it can be re-written at any time so you’re always free to change your mind - but Carol’s mind was pretty well made up. The main point to note is that Carol had decided on a DNR statement – basically she did not want to be brought back or kept alive by machines. We had another discussion much later where this section was re-written with more detail on breathing apparatus but the principle remained the same – Carol clearly states no invasive support. Carol also made the decision about where she wanted to die – and that wasn’t to be at home. Carol requested Newquay Hospital, so the system today will confirm this as Carol’s choice and when the time comes all attempts will be made to fulfil this request.

An Advanced Directive goes into the system you see – that’s why it’s official and needs GP agreement. It becomes part of your medical records so if for example you dial 999 the paramedics / ambulance team can see on their screen that you’ve made your decisions on the care you will accept and they will treat you accordingly without questioning your instructions.

It’s one of those great debating subjects isn’t it – end of life – when you’re having those throw away conversations about such things they’re along the lines of “don’t keep me going if I’m on machines” or “don’t keep me going if I’m trapped in a body that doesn’t work”. But when it actually happens to you it’s a very different situation – and the answer isn’t simple. I know there are some days when Carol wishes it was over – but I also know there are more days when she doesn’t. Every new day that Carol spends with the family or friends pop round for a chat are the days that keep her spirits high and her mind occupied. Yes there are some dark days but these have to be dealt with in the same positive light as the good days – Carol’s smile will light up any room and even on the dark days we can still find it.