Last night I noticed a tweet from @StuartBerry1. It had been retweeted by @amcunningham – if you are in any way interested in health or medicine, and you’re not already following Anne Marie on twitter then stop now and go follow her (if you’re not already on twitter then you’re really missing out).
Anyhow, Stuart was collating ideas for hints and tips of how to get the most out of a 10 minute GP consult. It’s years since I’ve seen a GP but I have attended numerous doctor or hospital appointments with my parents since my Dad was diagnosed with cholangiocarcinoma (bile duct cancer) five years ago. This blog is full of my version/experience of my Dad’s illness, it’s not his experience or views, just mine so it’s already once removed, and it is obviously heavily influenced by who I am, my world view and my experience. That said, I contributed a few ideas to the GP conversation and there has been a healthy amount of discussion about one of my ideas since.
I shared that on two occasions I’ve used my phone to record conversations with Dad’s medics. I thought twice about whether to share that information, and felt it was a little risky to do so, because I knew some people wouldn’t necessarily agree with my course of action, or approve of it. If I’m honest I’m not exactly confident of my own actions because on one occasion I didn’t seek permission to record it.
The first occasion was in A&E (a couple years ago now) and I asked the doctor if they minded me recording what they were saying so I could have it as a record and to share with family members. They had no problem whatsoever, seemed almost indifferent. I just recorded what they told us, listened to it a couple times after and I no longer have it as I’ve changed my phone since then.
More recently I recorded one of my Dad’s oncology consults. On this occasion I didn’t ask permission, the appointment was already 90 minutes late, I didn’t think of it, and it was only once the consultant started explaining something complex and I could see my Mum struggling to take notes, that I thought I’d just record it on my phone again. I can’t tell you how many times my Mum, Dad and I have all sat through the same conversation, with the same person, at the same time and yet come away with different understandings or memories of what was said.
Certainly my experience of Dad’s current situation is that it is extremely complex, and extremely complicated. It doesn’t really fit with my mental stereotyped image of clinical science. In fact i’d go as far as to say it doesn’t feel like science, and thats no bad thing, its much more human than that. My Dad has (with a few minor exceptions) received outstanding care over the past five years, he has defied all odds, and its not much short of a miracle that he is still here. None of that would have been possible without the phenomenal skill, compassion and knowledge of the many medical professionals he has come into contact with. At this stage though, as Dad is receiving palliative treatment (blood transfusions to counteract bleeding tumour, chemo, scores of drugs) it seems that it is more art than science. Everyone who comes into contact with Dad seems to have a different interpretation of what the best course of action is, or they don’t know – sometimes that honesty is refreshing, sometimes it’s just plain scary.
What I have learnt over the past five years is that there is probably no such thing as a textbook case, certainly if there is my Dad isn’t it. Consequently so much of Dad’s care is very personalised and tailored, things change quickly, we’re aware he is in a very precarious situation. I consider the best thing I can do is support him and Mum, and my siblings who live away, so we are all as aware as possible (or as aware as we want to be) about what the current status quo is, for as long as that lasts. To that end I don’t regret recording his consultation, even though I feel a residual guilt that I didn’t ask for explicit permission (it upsets the ethical researcher that runs through my core), it felt like the best course of action at that time.
I’ve listened to the recording twice since, with my Mum. No-one else has heard it, it’s something that is quite precious to me. On the one hand it serves as a factual record for when we start doubting ourselves and on another it is a recording of my Dad discussing critically important decisions with the man who has in my opinion (along with his surgeon/previous consultant) done the most to sustain his life. I can’t imagine anyone outside my own family ever hearing that recording, unless I figure out how to save it elsewhere I could lose it at any time, but I like the idea at the moment that one day my 2yr old niece may be interested in knowing more about her Grandad and she could hear for herself how brave he was, how he faced what I would have considered impossible conversations a few years ago, head on. It’s evidence of his spirit, and my fantastically brave and spirited Mum’s attempts to do the absolute best for him.
I appreciate the ethics are dubious, but I’m glad I did record it. I also think there could be a really useful application of this simple technology in everyday consultations. Lots of patients have smart phones that enable recording nowadays, I’d like to think that there is a GP out there who would embrace the idea – how about actively encouraging recording, even if it wasn’t a verbatim record that people wanted, I think most doctors surgeries could help people to get more out of their allocated slot if they encouraged people to think of the questions they wanted to ask before seeing the doctor.
Some of the obvious concerns are around litigation, but really, really in our enlightened world of empowered patients is this an acceptable argument? OK, so I’m playing devils advocate but really look at how much information is collected from the patient by the doctor in an average consultation. No patient I know of has ever been asked if they mind if the doctor takes notes. How about taking a leap of faith and embracing the opportunity of supporting patients and their families. Who wouldn’t want to?
I’ve banged on about giving blood on here before, which is a little virtuous and deceitful given I’ve not done so in years! Not for the want of trying though, I’ve just not managed to get a session appointment that I could make but all changes this week, I’m donating on Thursday evening at the racecourse in Newton Abbot. Dad has been receiving blood transfusions to keep him alive for a couple months now, he had his first one in October last year and has been more reliant on them as time has gone by. I’ve also blogged about organ donation, most recently in The ultimate recycling? This week facebook and the NHS Blood and Transplant Service have launched a campaign to increase blood donations; the Olympics, the bumper crop of bank holidays and various other big events mean that they need to increase stocks.
Without blood transfusions my Dad would not be here today. He can’t keep receiving transfusions forever, in fact it wouldn’t be fair or a good use of resources, but for now it is what is keeping him alive. You could sign up to donate blood today and transform someone’s life. Hopefully it won’t take you as long as it has me to get around to actually donating, but registering is the first step. I have seen the significant difference a blood transfusion makes to someone. In Dad’s case it is the difference between life and death. Please go sign up now. You can register by phoning 0300 123 23 23 or visiting their website here. What’s stopping you?
April has felt like a long month, the reality of course is that is all perception, it’s actually only 30 days and I’ve been away for a significant chunk of it, which has perhaps stretched it’s length in my mind. I blogged at the start of the month about Dad’s latest treatment (blood transfusions and chemotherapy) for managing his cancer. At the time I expressed my concern that I was travelling a bit in April and would be away from home if anything happened. The professionals had predicted that if Dad was likely to have an adverse reaction to his chemotherapy it would happen over Easter weekend – sure enough they were right with the expected response, and almost precise on the timings, Easter came and went in an unremarkable fashion and Dad was admitted to our local hospital on the Tuesday that followed. He had an infection, it wasn’t clear what sort or how to manage it, but he was kept in isolation and looked after until he was stabilised.
The weekend that followed I had the absolute pleasure of a weekend in Bonny Scotland. Great idea, lonnnng way. Up to Scotland on the Friday and back on the Monday. I visited Dad on the Thursday evening and he was crystal clear that I had to go, and that my life couldn’t be put on hold for his. He was sent home that weekend and I had a great time away, helped in some part due to my complete lack of mobile signal so I didn’t keep checking my phone for missed calls or texts, which was a welcome relief in itself.
The following week I was working away (at ADASS Spring Seminar) from the Wednesday – Friday. Dad had already had his second course of chemo cancelled given his initial reaction, but seemed to be picking up when I saw him that Tuesday evening. Dad and Mum had an appointment with his oncologist (only the second scheduled appointment I’ve missed since Dad was diagnosed over 4.5 years ago) on the Thursday of that week and he surpassed their expectations again – he appeared to be making a remarkable recovery, his internal bleed and blood loss seemed to have slowed down and he was feeling a lot better. As Mum described it this evening, they had a taste of normality – he was even able to take their dog for a walk on the beach, the first time he has been well enough to do that in months.
The weekend that followed I flew to Ireland for a conference (#EIPIreland) for three days and then stayed on in Ireland for a friend’s wedding this last weekend. On Thursday I got the text I’d been dreading from Mum that said Dad was being admitted to hospital by ambulance for transfusion asap. I’ll spare you the details, mostly because they’re completely inconclusive, but it looks like Dad’s body is struggling to cope – what’s not clear is whether that’s because he was too anaemic for the chemo, or whether it’s a result of the chemo, or indeed whether it’s because his body is slowly starting to shut down, or given Dad’s unique trajectory with this illness to date whether it’s something altogether different.
Having had a week away, I went straight to the hospital on my return yesterday (incredibly grateful that I was back on home soil, Dad hadn’t died while I was away and that my brother had come down to support Mum in my absence) and was gob smacked by how exhausted both my parents looked. It was only a week since they were walking the dog on the beach in the sun – not that you’d have thought as much if you’d seen them. I felt a huge responsibility, not that I could have done anything differently, but I felt like I’d left them to deal with things, and they looked like they’d paid the price for that.
Just about the only thing that is clear this evening is that the bed Dad had in the local hospital was needed for someone else, he was growing increasingly agitated and exhausted with trying to understand the system/decisions/information, and he was being discharged irrespective of the knowns or unknowns. It’s been quite an immersion, not that I ever really escaped it on my week away, but it’s a real reality check as I sit on their sofa banging the keys trying to make sense of it, or share the lack of sense in it with you (assuming as the eternal optimist I am that someone has read this far), and think about how all encompassing living with not knowing is. There are so many unknowns and so little certainty, the immediate reflection is that it can feel overwhelming at times. It’s like a constant faulty rollercoaster ride that you can’t get off, occasionally it slows, in fact sometimes it stops just long enough for you to feel rational/balanced/normal again then it’s like it flies off again, throwing any sense of equilibrium out the side of the ride with you.
There are loads of immediate questions we have, the most immediate include whether Dad will need to stay on the new drugs he’s been given in hospital this time or change again; will he have a PICC line inserted after 11 failed attempts to insert a cannula at the weekend; will his chemo be continued; how long can he cope with the constant intervention; how long can the NHS afford to provide intervention/blood/chemo; whose advice should we take and/0r who should we ask questions of. That may give you a smidgen of a sense of the level of not known.
Then of course there is a continual, constant balancing act of making the right call around priorities in life. The hard thing about knowing someone you love is terminally ill is that it provides a lens of constant reflection, every decision (if you allow it) could take on a significance of monumental proportions. Well maybe I’m being a little dramatic, perhaps not every decision, cocopops or muesli for breakfast shouldn’t have a massive effect, but knowing whether to visit tonight or wait until tomorrow could.
My colleagues have been constantly supportive, encouraging me to take what time I need, the reality is that I don’t know. If I take time now is it an indulgence, will it scare Dad into thinking I think he’s dying (and put him in a negative mental place that suggests I don’t believe he’ll live much longer), will it just put other elements of my life under more pressure in the long run, will it just add to the pressure that my folks are already under, if there is one thing I have learnt it’s that multiple people hanging around and waiting to understand the vagaries of the NHS is not a good use of their time and definitely puts your already strained relationships under more pressure.
Likewise people have offered to help in any way they can, the reality is I don’t want to call on people’s offers of support now unless I really need it because I don’t know if we’ll need it more later, it’s a bit like the boy who cried wolf I suppose – it’s impossible to know what the future holds so you just have to juggle the unknown and hope you make the right call. I’m not really sure where I’m going with this post, in fact I might not even publish it because it feels like a lot of rant with not much purpose, an almost indulgence (the worst kind of blog post). That said if this goes any small way to share the experience with anyone else then maybe that’s no bad thing. It’s really exhausting constantly living with an awareness of the unknown…the huge irony of cause is that we all live in this existence every day, even if we don’t recognise or realise it.