Kim Leadbeater’s bill has focussed attention on terminal care, the evolution of which in SWF runs parallel with the history of district nursing in the town.
When I first arrived here, the ‘district nurse’ was the Anna Tickle, a delightful Irish bundle of fun who knew (and was known by) just about everybody. She popped into the practice every day to pass on her wealth of experience of both nursing and horse racing (i.e. how to pick a winner). Anna put ‘the craic’ into primary care!
For many years I played a very minor role in palliative care. As the town grew we built up an excellent team of district nurses based in SWF with whom we had regular contact. During the ‘golden era’, one of these was SWF resident, Sheila Smith. The nurses were on first name terms with their patients and vice versa … and they knew far more about palliative care than I did. If there was ever a problem we could speak to them face to face and sort it out pronto.
Unfortunately ‘NHS management’ keeps a close eye on these matters and, if they spot a system that works, the decision makers feel a compulsion to scrap it ASAP. Thus it was that, without any discussion with the GPs, the district nurses were moved out of SWF to a base in Maldon and all communication was supposed to take place through some sort of central ‘call centre’ … which was extremely unsatisfactory and inefficient.
The nurses had to drive back to Maldon for their lunch break (thereby using up most of the allotted time) or eat sandwiches in their cars. I invited them into the practice so they could relax in comfort … and gave them a key to use at weekends. But the ‘espirit de corps’ had gone, the team was fragmented, and some resigned in disgust.
Hospice care was pretty good – but places were limited and so our patients who chose this often had to wait for hospice patients to ‘join the choir invisible’ for a bed to become available. The ‘Hospice at Home’ movement has sought to make the limited funds/capacity go further – but this was still in its infancy here during my time.
When we lost our local district nursing team I felt the need to be a bit more ‘hands on’ – and ended up giving my mobile phone number to the palliative care patients and their relatives/carers. It soon became clear that having one clinician who knows the patient and their family – somebody who is always contactable – is the ideal. I was happy to take that on latterly because, by that time, I’d known most of the terminal patients and their families for years if not decades … so there was a relaxed atmosphere and it was easy to, for example, have family conflabs (involving the patient) to discuss concerns and agree how best to handle the situation.
Most of the time it wasn’t rocket science. The relatives usually did a great job … but, by and large, they’d never had any experience of terminal care so they spent their time worrying that they were messing up. All it took was for somebody they knew and trusted to say: “You’re doing amazingly well” to allow them to relax. ‘Continuity of care’ meant that I could often deal with problems with the minimum of inconvenience to all concerned whereas, for example, an ‘on call’ doctor who didn’t know the patient or their circumstances would understandably have a much lower threshold for, say, admitting them to hospital (which is often counterproductive in those circumstances.)
Fragmented care seems to be more in vogue than it was …. but it’s not without its problems. You hear stories like: “I contacted the district nurse who said it wasn’t a decision she could make so could I call the GP … where I was told that there was nothing in writing about this problem in the notes so could I contact the hospice where they said there was nobody they could send out in the near future so could I contact somebody who was in the area who could assess the situation … so I started all over again.” In theory it’s easy to eradicate this problem as all it takes is for one clinician to ‘own’ the situation and make the decisions. In practice, though, it a whole lot more complicated than that – and I should point out that the way of providing terminal care I adopted latterly isn’t something I’d have taken on if I’d been a young GP with a young family as they would have deserved more of my time and attention.
Practices which enthusiastically adopt ‘The Daffodil Standards’ seem to have found a workable way forward – well suited to this day an age.
In my time, even in the best of situations, there were times when an ‘alternative route’ could have been considered had the law allowed it. For example, an elderly lady deteriorated in hospital, lost consciousness, and was sent out as there was nothing more that they could usefully do for her. She never regained consciousness and it took a few days for nature to take its course during which time she was VERY well looked after by her rustic daughter … so it was what we would call ‘a good death.’ When she died, the daughter thanked me for what I’d done … and then added: “But I would never have put any of my goats through that.” I could see what she meant.
As for Kim Leadbeater’s initiative, for a long time I was in the ‘anti’ camp but my experience resulted in a softened view. That is not to say, of course, that other clinicians’ experience hasn’t led them to a different conclusion.
If the bill progresses smoothly it will force GPs to make their position clear. If I was still practicing I’d take a ‘pragmatic’ view … in other words I’d take the coward’s way out. I’d be in favour of people being given the choice … but I wouldn’t want to be the one providing the drugs used for ‘assisted dying’ as it would confuse patients about my role. They’d be excused for thinking: “What’s he here for today?” I’d want them to know that my role would be to deal with their needs and keep them as comfortable as possible – so it would be left to others to step in if they decided they wanted a speedy exit. I’m sure many would describe that as a ‘cop out’ … but I could live with that.
Dr John Cormack