Family matters
Hello again.
When I set out on this blogging adventure, I planned to author a piece every four to eight weeks or so, maybe churning out six blogs in a year. I was doing quite well at first but then became overwhelmed and out of time, or at least energy, when my dad became increasingly unwell and then terminally ill late last year. He finally died at the end of March, on a significant family anniversary day, and since then I have not really been able to come back to writing.
Running alongside the family illness was my abrupt departure from general practice at the end of October 2023, a consequence of changes to the practice partnership that I perceived as placing me in an untenable situation—I was working only a day a week in a salaried position. I had planned to leave at the end of December, but after a difficult Friday on-call and a review of my situation, I had to hand in my notice immediately to protect my professional well-being.
Oddly, that really rocked me. General Practice is not an ordinary job; you invest a lot of yourself in it emotionally, and I loved doing my best to support the patients and the community. I had been in that practice for 17 years and in general practice for 30 years. In the end there was no carriage clock and warm farewell dinner with sparkling wine and speeches. It was just another day on-call followed by a resignation e-mail. Hey ho.
Nowadays, from a professional perspective, I work as a lead clinical informatician supporting an NHS team in their ambitious delivery plans, and I also do a little bit for openEHR International as co-chair of the Clinical Program Board. I am not working in any patient-facing roles anymore, which makes me both sad and relieved in equal measure.
And I may be back writing now. I am not sure, but I am trying this out, and I will see how it goes.
I thought what might be of interest to you, and of some cathartic value to me, would be to consider my dad’s illness and the things around it where I think the informatics could have helped.
My dad was 85 years old when, post-COVID, he had a probable TIA — actually ‘Amaurosis Fugax’ for those clinicians interested (not ‘amourous fugax’ autocorrect!). He described the classical symptoms to me on the phone one evening, and I urged him to speak to his GP about this. He did. This triggered a care pathway. I thought maybe all he needs is his blood pressure checked and some clopidogrel, and sure enough, in the end, this is what happened, but not before various traumatic trips to the hospital, including a dreadful consultation where he was bluntly told he was going to develop vascular dementia. No thanks for that one.
As part of this workup, he had a chest x-ray. This revealed a pleural effusion, fluid around the lining of the lung. It then took several months for this to result in any further activity, but he did eventually see a respiratory team for a workup, and in the end, came out with a diagnosis of ‘Mesothelioma’. This is a cancer of the lung lining caused by asbestos exposure. You don’t really get it any other way.
Asbestos exposure is usually from industrial or occupational exposure. Dust, essentially. You may have heard of the Glasgow shipyard workers coming home covered in it, and their wives and families then exposed from cleaning the clothes. A disaster. My dad, however, was a teacher in schools across Glasgow and Lanarkshire. Fun fact: being a teacher is one of the high-risk jobs for asbestos exposure and related illnesses. They used it extensively in the fabric of the school buildings. Who knew?
Through all this, the appointments and plans were communicated largely on unbleached paper letters sent by post, which included informational leaflets and intimidating warnings about the cost of not attending appointments. It churned along, though, and he managed with family support.
After that, we were in a period of slow decline, although he remained living relatively independently at home, albeit with lots of help from family, friends and, latterly, carers from the social care team.
A crisis following a fall at the end of March resulted in admission, a long and somewhat undignified journey through A&E, two different hospital beds, and, once he was alone, an acute respiratory deterioration which killed him. He was 86 years old, but it was the asbestos that killed him, not his age.
For me, during that period when he was terminally ill, I tried to work from his house when I could, using Teams and all the other remote tools to try and keep in touch and up to speed with developments in our team. That mostly worked, but was also difficult as he did need some looking after. It was great to have the option, however, even if I should have taken up the offer from my boss of a proper desk chair to save my back!
Watching and living through the operations and procedures of the health and care system as we tried to help my dad probably did not throw up many surprises. Of course, I was working as a GP and in health IT, so I had some handle on the disconnected and system-centric nature of service delivery. I kind of knew what to expect.
There was no way that my dad would have managed any of this alone — navigating appointments, nurses, prescriptions, and travel was all overwhelming for him as the meso slowly ate away at his physical and mental functioning. But the family was there to help, and we did.
His GP (hello!) was really nice and supportive. She stayed in touch, came to see him a few times, and was always helpful when we called.
I have worked on digital care planning for nearly two decades. I recall taking the initial Excel-designed Key Information Summary form and translating it into a bunch of written requirements, mostly around terminology bindings, back in 2006-ish. With colleagues and domain experts, I contributed to the digital mapping of the UK Resuscitation Council ReSPECT form into an openEHR template in 2017 and then helped with the development and implementation of the digital ReSPECT application in Scotland in 2018 and onwards. I was interested to see how care planning worked for real.
Sadly, the answer was not so well. We received the big green ‘My Anticipatory Care Plan’ book from somewhere, possibly via the district nursing services, and my dad filled it in with some help from family. It lay on the dining room table. I do not think anyone ever looked at it again.
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The “Do not attempt cardiopulmonary resuscitation” (DNACPR) discussion was approached abruptly, like a tick box target, at a time too early in his disease progression for there to be a reasonable discussion about it. It could not be done. There is something untoward with the approaches we take to DNACPR decisions, which I know are clinical ones — rarely is there really any choice — but it sits high up the palliative care checklist as a systems task to be completed, and this, in turn, removes the empathy and patient context from the process, from the discussion. It ignores that yes, of course, if the patient dies of the irreversible disease CPR would be pointless, but while they are active and alive if they were to say, choke or be hit by the proverbial bus they may still benefit from CPR. It seems a black-and-white decision for something that is much more nuanced. Not so much when the patient is dying, but that is a different thing from when they start out with a terminal disease.
Perhaps my dad also had a health board care plan completed, and I know that is meant to happen. If it was, he was never shown it nor involved in its completion. Digital ReSPECT was not available as an option in my dad’s Health Board.
As he became more clearly palliative, we did have the DNACPR discussion with the GP, but there was no real decision to be made there, just a recognition of reality. We also discussed other treatments and agreed that antibiotic treatment of infection was not to be initiated. I think this information would have been added to his KIS, at least that is what we had expected.
How much of this affected his care? During his A&E admission after the 4:00 am fall, following some hours in an A&E bay, the doctor attended to say they were going to start him on some antibiotics. ‘But,’ I said almost reflexively, ‘his care plan says not to?!’
Had he seen it and decided to go ahead anyway, or was it not there, or had he just not looked? We will never know. Of course, these decisions are not normally mandated in a care plan. The best action depends very much on the context, and, at that time, the doctor was correct; they were worth a go to see if he could get some symptomatic benefit. I was then anxious that by mentioning the care plan decision, he would now be denied any antibiotic treatment. Thankfully, that did not happen.
Still, at least his DNACPR status was clearly understood.
How much better would care be if we had digital care plans about the patient, and not about the condition or the organisations providing care? Digital care plans that enable contributions from everyone who should be able to, and that do not exclude the patient or their carers by design. One London is doing some of that, and in Scotland we are also trying to reflect these requirements into digital versions of Future Care Planning.
The challenges in coordinating his care also struck me, with carers, nurses, podiatrists, physiotherapists, his GP, his GP’s staff, the community pharmacist, the palliative care team, the oncology team, the respiratory team and probably others that I have missed, all managing his care but each from their silos. The only thing at the centre of any of it was my dad and, by proxy, his family acting as the communications hub, scheduler and transport logistics manager. Sometimes telephone messages to services went unanswered, or people appeared at the house (or did not) unexpectedly. The irregularity and uncertainty of it all caused escalating anxiety for my dad, which was distressing and difficult for everyone.
This problem is itching to be fixed. While the services prioritise things like ‘appointments’ and ‘letters’ when they build patient-facing digital services (which are good things), I would like more attention given to building the digital care team. All the people and organisations involved in someone’s care for a particular issue, perhaps all their issues?
This harks back to my friend Mary Hawking’s ‘What about Fred?’ discussion from 2011, which initiated discussion about the ‘Facebook for health’ approach where, with the patient at the centre, all the services and contributions to care were visible around the patient with their wishes sitting front and centre in their profile. Hildegarde McNicoll’s blog (from shortly before she sadly died) also highlights all these disconnected people and processes.
The Digital Care Team even has its very own FHIR resource. Solving this issue in implementation, which could use staff directories and IDs, manage delegation and out-of-office and highlight functions, roles, and how to get in touch, would be a revolutionary piece in the Digital Health and Care jigsaw. Communications could come via this route, back and forth. A notification service should be provided for everyone so patients and carers know when an appointment has arrived and health care professionals know when a result is abnormal.
All of that. We should make it happen.
Lastly, I guess we need to chat about DNACPR. I realise how complex this area is where the care providers want a binary decision immediately for urgent care, but the patients are leading complex lives full of uncertainty and ambiguity. Making effective digital representations of CPR decisions that are usable in urgent care pushes them towards ‘Do or Do Not’ models without nuance and context. Terminologies, for example. It’s not great.
Possibly one thing that would really help is for patients and carers to be able to see this decision and maybe even be able to add some of that context themselves.
Throughout my dad’s illness, everyone did their best, was kind (apart from maybe one consultant!), and tried to help. Thank you, all of you, for all of that. I do not want anyone to feel blamed or criticised by this blog piece; that was never my intention. I know how hard it is to do everything right in palliative care. I am hoping instead that some of what I say may catalyse some progress in making things better because I know that we collectively can do that. Technology is not really the barrier.
Perhaps I am back to writing. I hope so. Life events like illness and death of loved ones can affect you more than you realise and in unexpected ways. I am very glad and lucky to have the resources and the opportunity to say a piece out loud and maybe even have some people listen.
Thanks again for reading.
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Asbestos Action is a Scottish charity that has been set up to assist sufferers of asbestos related diseases in Scotland.
