Àdvance Care – à la lettre

I have written a couple of blogs already about Advance Care Plans – I will not go into the details now; if you want to read more, see here.

What some doctors and nurses struggle sometimes to organise is the vehicle for the delivery of the, let’s call it ACP.

There is an ACP which all people living with significant long-term conditions and who are at risk of physical or physiological deterioration should have co-created with them and their GP. Most of the documents I have seen locally are yellow. I don’t know why that colour, but at least it stands-out.

These documents include some idea about an individual’s situation when they are well, a list of next-of-kin, diagnoses and medicines. For example, can only walk five meters when well, breathless at rest, normally completes the Guardian crossword, has asthma; this then can help another health or social care person determine when they meet someone for the first time whether there has been a deterioration or, this is just how a person is on a good day.

The documents rarely make plans explicit.

I will include below an ACP letter I wrote to help some of the doctors in Rotherham formulate their intentions for sharing the plan with GP, Care Home, patient, relatives – all those involved in support and care, to address the problem we have in society of unnecessarily medicalising very old age or escalating care inappropriately – that is, hospitalisation when hospital admission is not what the person, their next of kin or family want.

It shouldn’t really be done during an acute hospital stay; my approach is to use the time for some good. It is bad enough that the Care Home staff and paramedics have dragged you out of bed at three in the morning, let’s do something to stop it happening again.

Palliative care works very well in the community (mostly under-resourced and poorly understood by bureaucrats), although on those occasions when it breaks-down, it is always heart-breaking and painful for those involved. This is to ensure that people are given the right to die in their own beds, not on plastic coated sheets, oxygenated on a noisy hospital ward.

So, here is my letter.

It is a guide.

The names are made-up, and the situation is not real, basically an experiential composite of many tens of thousands of older people many of whom occupy a place between life and death, a grey zone of existence;

Before writing this letter, you must involve patient and family; if possible, speak with the GP or care home manager, stop acting in isolation, realise that health and social care are a complex web of relationships, dependencies and expectations, that can only be effective when engaged collaboratively.

The thing about the letter is that it cannot be generic. It has to be written new for each person (yes, we are all individuals, peeps) – the message however is usually quite consistent; if you can’t cure me, give me care, comfort, attention, involve my family and those I love, listen to them, consider their wishes.

What do you think?

OK – it is not that finely crafted, it can be improved, but, as start?

I would love to hear anyone’s opinion on whether this is worth pursuing.