‘The standard you walk past is the standard you accept’

It’s 5.30pm on a winter Monday, already dark outside. On the way back from clinic, I take my customary detour up to the ward via the emergency department and the acute medical unit. If any of my patients are there, I like to know, and I also get to see what’s happening around the hospital as I walk and talk.

In the emergency department, four patients wait in the corridor with ambulance crews. One lady is on oxygen, one on a drip, and there is a young patient under a blanket. The crews look weary, resigned to a wait, the same crews that should be responding to 999 calls but are trapped in a stuffy corridor waiting to handover patients to staff who are overloaded and into beds that do not exist.

The emergency department board is a mix of red and black – red is bad, but black is worse. The colours signify how long patients have waited to be seen and sorted out. Many of the annotations read ‘MBR’ – Medical Bed Requested – patients have been seen and assessed, but there are no beds for them. But the waits to see emergency department doctors are also long – the junior doctors here are under pressure, and the senior and middle grade staff in the department are already working a ridiculous rota just to keep things safe, with rota gaps covered by locums. There’s nothing in the tank. ‘What’s the code for the gas machine?’ someone in scrubs asks. ‘Are you one of our doctors?’ says the receptionist. ‘I think so!’ he says.

I cut through resus to the acute medical unit. There are 3 patients in resus – a lady with a fractured hip, a febrile child and the patient who has just had the blood gas sample taken, who looks really sick. The new F2 assessing him looks flustered and can’t get hold of the medical registrar. There isn’t one until 9, I tell him. The day registrar had to go home to sleep in preparation to cover the night shift because the locum dropped out at the last minute. I look at the gas result and give some advice.

Through the door at the end of resus, I turn right into the acute medical unit doctor’s office. Although it is only 5.30, the admissions board is almost full, and the second board will need to be started before the night shift come on – a bad sign. Many of the admissions are coming from the overstretched community teams, but there’s also a high number from the emergency department. The early warning scores are written next to the names of each admission so that the team can prioritise the sickest patients. The list of patients unclerked is long, as the team are a doctor down today because of a rota gap, as well as missing a registrar. A cardiac arrest on another ward has taken the whole team out of action for the preceding 20 minutes, and they are just discussing how they will catch up. The consultant on call gives me a weary wave. He is trying to teach some medical students but keeps getting interrupted.

Round the corner, at the nurses’ station, a conversation is taking place between the ward co-ordinator and the site manager about which escalation areas to open up overnight, and how they will be staffed. Another nurse is on the phone to my respiratory ward, trying to get hold of a nurse there to hand a patient over to so that a bed will be freed up on the acute medical unit for one of the patients in the emergency department. I’d like the man in resus to go straight to my ward, but he hasn’t been waiting long enough.

An occupational therapist is on another phone. ‘I’d like to speak to the duty social worker please, urgently’. We no longer have hospital social workers, so getting non-medical issues sorted is really tricky. There’s a possible safeguarding problem, and urgent care is required for a relative. But home care is almost impossible at the moment, and waits are long, meaning patients are stranded in hospital. A relative approaches the desk: ‘I’ve been waiting here for an hour to talk to someone about my father’ – I apologise and find the nurse in that bay to give him an update. She is doing the drug round, and I am not supposed to interrupt her but I do. It might make a medication error more likely, but may avoid a complaint.

I head past the AMU kitchen and down through ambulatory care, where 9 or 10 patients wait in a cramped reception area. One or two are clearly going to need admitting into beds, but there are no empty beds and they are relatively safe here, at least until the nursing staff finish at 9pm. There is a backlog in assessing these patients because of a lack of rooms, and the doctors keep being bleeped away. There’s nowhere for the staff to write notes, and very little privacy. It’s hot. There’s a sign on the exit door telling people not to use it as a short cut. I take a short cut through it onto the corridor.

Up on the respiratory ward, there are two patients sat out by the nurse’s station eating their tea whilst waiting for transport. One of their beds is ready for the next patient, but the nurses haven’t had a chance to take handover. The other bed space needs cleaning but it’s tea time and there is no housekeeper today so the healthcare assistants are giving out the meals first. Four patients of mine are ‘medically fit’ to go home, and would be safer there, but need their care assessments completing first. The form is several pages long, and has to be assessed by an external social worker to see what care and support will be funded.

I am asked by one of the physiotherapists to look at a man with pneumonia who is on a high flow humidified oxygen Airvo device, and then I call in to see one of my patients in a side room who is dying of lung cancer. He is agitated, his son is upset and I find the nurse looking after him to ask for some more midazolam. She is in the middle of a drug round and the other nurse is not signed off for controlled drugs yet, so I know there is going to be delay in him getting the medication. I wonder if a syringe driver might be better, to avoid delays in getting medication to him, but then worry that he would not be alert enough to talk to his daughter who is due to arrive tonight from London.

I sit at the desk on the ward to write up some meds and answer the phone 5 or 6 times. Most of the calls are from relatives wanting updates, or from AMU wanting to give handover. I try and stall them on AMU, because I want my patient to get his midazolam, but I also want the chap in resus to get a bed. One of the relatives who phones is someone I need to speak to anyway, and we make a very straightforward resuscitation decision and escalation plan together over the phone.

This all takes around 30 minutes. I see many, tiny kindnesses on my travels, see lots of patients getting good and compassionate care, and see lots of colleagues bending over backwards to ensure that things get done. I see lots of patients and families waiting patiently, knowing that we are doing our best, thanking the staff for their hard work. And our hospital is not unique. These scenes are being played out up and down the country.

But sometimes we do not – cannot – notice them. We have made ourselves so used to this new normal that noticing it all – the sub-optimal processes, the unnecessary delays, the broken promises – would make it impossible to come to work. They say that ‘the standard you walk past is the standard you accept’. I don’t accept these things that I see – people on trolleys in corridors, patients waiting for vital medication, families in distress. These things are not acceptable. We should not walk past.

But if everybody keeps stopping, who is going to do the work?

The Egg Cosy Paradox

Many people often think of hospices when they think of dying. Our local hospices are amazing places, full of dedicated staff. Both of the buildings are well-designed, with plenty of outside space, a large proportion of private rooms, communal and private space , a calm atmosphere, and a very non-clinical feel. The main focus of the hospice is for patients to be at peace, and death is not a taboo subject there – in fact it is the concept of a good death which underpins much of the work that hospices do, although it is important to note that around half of patients who go to the hospice do not die – it is certainly not a ‘one-way ticket’ as one of my patients recently worried. Care is holistic, and the spiritual and psychological needs of patients and families are also tended to, often by brilliant volunteers. Nursing staff are skilled and autonomous, medical staff are usually open and honest. The focus is on care, communication and compassion. They have squirrels and ducks. It is where I would want to die if I had a terminal illness.
 

Less than a tenth of of people locally die in the hospice. Almost half of our population die in one of our two acute hospitals. This equates to around 1500 deaths per year – around 4 or 5 deaths every day across the two hospital sites. If we were doing 1500 cardiac catheters a year, or 1500 laparotomies or bronchoscopies, we would be pretty good at those things, wouldn’t we? We would consider ourselves a centre of excellence, no doubt. But dying in our hospitals – and many others – remains marginalised. It can be a wonderful thing, and hospital is undoubtedly the right place for some people to die. Sometimes I exhort the staff to ‘Be More Hospice’ and they respond in style. I have seen patients die peacefully, surrounded by family, music playing, a favourite blanket on the bed, staff knowing how to just be there, wonderful communication. But hospital death can also be an awkward inconvenience, an event covered with a veil of shame, almost – a clinical event, impersonal, undiscussed. We worry more about whether it was avoidable or preventable than whether it was peaceful. It can happen on the wrong ward, on the wrong day, at the wrong time. It can happen almost as an afterthought at the end of a ridiculous series of tests and treatment. It can happen almost entirely controlled by staff rather than patients or family, or indeed not controlled at all. ‘Can I touch him?’ a relative asked as someone was dying, as if her loved one were the property of the hospital. ‘I had no idea she would die’ said a relative of a frail and elderly patient, who missed the chance to visit for a final time.

 And what of patients who die at home? The thought of dying in a familiar environment, drifting away surrounded by loved ones, is seductive. With advance planning, many people are able to die a peaceful death at home. But sometimes the reality can be different. It’s hard work caring for someone who is dying, and supporting families and carers – particularly out of hours or at weekends – to control symptoms can be very challenging. There are lots of amazing staff within the community doing great work to help patients to die at home, but sometimes a crisis cannot be dealt with quickly or adequately enough to avoid an admission to hospital and then everyone feels let down.

The answer, surely, is to integrate and collaborate. Not because those are nice, buzzy kind of words that look good in a strategy, but because it’s the only way to ensure good dying for the vast majority of the people we serve, not just the chosen few. That is what we are starting to do in my patch, and I feel grateful to have such amazing colleagues in all three areas – hospice, hospital and community.

Also – we need to remember, and be reminded, that looking after people who are dying is really, really important work. It’s not a luxury, or a nicety. It can’t just be left to kind and pleasant and helpful people’s goodwill. It needs investment, it needs valuing. ‘It’s nice that you have time for these little chats’ says my colleague – not realising that these ‘little chats’ mean reduced length of stay in hospital, fewer expensive scans, happier patients, less complex grief for the bereaved (and a real feeling of job satisfaction for me).

 The egg cosy? Some time ago, after a particularly fraught afternoon on an overcrowded ward, dealing with a patient dying of lung cancer who was uncomfortable and angry, and whose family were angrier still, I went to visit a patient of mine who had been admitted to the hospice. She and her husband lay together in bed, looking out over the garden through the open French windows. We chatted for a while. She told me how amazing the hospice was, how I should come and work there, how I would fit in. (Her husband pointed out, astutely, that perhaps I was more use ‘behind enemy lines’ at the acute Trust) A volunteer came into the room, bringing supper. It was a boiled egg, with toast, all on proper china, with a cloth napkin and a little glass of water with some sweet peas in. It looked beautiful. And the egg was covered in a perfect knitted egg cosy. ‘If it’s not soft enough’ the volunteer said ‘let me know, and I’ll do you another one’.

 

I managed to wait until I got to my car before I burst into tears. I wasn’t quite sure who I was crying for – me, my patient at the hospice, my patient at the hospital, the volunteer – or what I was crying about. It had been a long day. But sometimes I think about that egg cosy, and the paradox that it presented to me – perfect care for some, or good enough care for all? And it spurs me on, on the bad days and on the good days, to keep doing what I do – the little chats with the big results, the soft (boiled) skills with the hard outcomes – it’s important. We all need to be, if not knitting metaphorical egg cosies, then at least trying to boil our patients a metaphorical egg.

 

 

 

The Lark Ascending

I never expected her to actually go and bloody die.
It was a friend who recommended Kate Granger’s first book to me. I read it in one sitting. It resonated hugely with the concerns that I felt about the environment in which we both worked – and in which Kate was now a patient. An environment where the little things mattered, and where kindness was as important as competence but often overlooked in the name of efficiency.
Soon, Kate and I were ‘friends’ on Twitter, and as I got to know her through her tweets, my overriding feelings were of awe and respect rather than pity or sympathy. Yes, she was young, and going through a particularly shitty illness, but what she was doing with her experiences was amazing. I wasn’t sure – and I’m still not sure – that I would have the strength to do what she did. I would be more likely to be weeping and wailing in the corner, feeling sorry for myself, than trying to change the world.
Which is what she did. She always used to say she was ‘ordinary’ and ‘normal’ – in that fantastic Yorkshire accent, with a sideways glance that suggested the punch line was just around the corner – but she wasn’t. She had a way of being able to recognise and then verbalise the things that bothered her, in a constructive way, and an extraordinary generosity in sharing her (not always pleasant or positive) experiences for the greater good. Healthcare is better because of her.
We met a few times – not enough, but there you go. First, at a conference in Edinburgh, where I sat next to her and we giggled our way through a session on advance care planning. On introducing herself, she said ‘I’m Kate. You could probably tell by the headscarf’. ‘You don’t look too bad for someone who’s supposed to be dying of cancer’ I said, and we fell about laughing. I knew then that she would have been a friend regardless of the cancer or not – and that we shared a similar, black sense of humour which some might have deemed inappropriate. ‘I like your ipad mini’ I said to her, as she tweeted her way through the conference. She told me, matter of factly, that it was easier to hold than an ipad now that the chemotherapy had given her a peripheral neuropathy. I gave her a CD of some Vaughan Williams that I knew she’d enjoyed at the Proms, and that she wanted to listen to when she died. ‘I’m not bloody ready yet!’ she said, and we laughed again.
The second time we met was at the Royal College of Physicians, when I was invited to the launch of the film that she and Chris (the amazing, amazing Chris, who deserves a whole blog of his own. And a Range Rover) had made for Dying Matters week. I’ve not been able to watch it since she died. Through talking to her there, and to her colleague (and inspiration, though he will hate me saying that) Frank, I knew that she and I were very similar kinds of doctors – relentlessly focused on communication, tediously obsessive about the little things, occasionally prone to the moral high ground and continuously self-critical about times when we could have been better. Perhaps it was our star sign – her birthday is the day after mine – or perhaps it’s that we both suffered from a touch of imposter syndrome. I was honoured to be there and to meet other people who I had admired from afar. We did an Oscar style selfie, and drank champagne, of course. There was often champagne.
We met several times after that, and kept in touch with late night messages, peppered with swear words – hers and mine – particularly when treatment wasn’t going well, but also when she was working- we would chat about patients, jobs, frustrations, the NHS. She was a fierce advocate for the NHS in general, and for older people in particular, and was a brilliant geriatrician.
She was always very stylish, and I remember admiring a pair of lovely knee high boots she was wearing. ‘What size feet are you? You can have them when I die’ she said. ‘I don’t want your bloody boots!’ I remember saying. She asked me why not. ‘Because that means you’ll be bloody dead, and I don’t want you to bloody die.’ She hugged me. We drank more champagne.
The last time I saw her was at her house in Wakefield, a few weeks before she died. She had come home from hospital for the last time, and had stopped treatment. She had nephrostomies and was on strong painkillers. But she was still very much Kate. We ate brownies, laughed, chatted. I’d taken her a colouring book, and she roared with laughter to hear that my eight year old had suggested that I find quite a short one, in case she died before she could finish it. She talked about her family, her darling niece and nephew, her work, the holidays she had enjoyed with Chris, the things they had achieved together since her diagnosis. Chris hovered in the background supplying drinks and the occasional heat pack, and trying (and failing) to keep us on topic. When it was time to leave, she stood up and hugged me. ‘Die well’ I said to her. ‘I’ll give it a go!’ she said. And we laughed again, although not as loud or as long as before, as we both knew that this would be the last time I saw her, and that death was not far away.
And now she’s gone, like the lark in the music she loved, spiralling upwards into infinity. Thirty four. It’s no age at all. But when you look at what she did with those years, and how she turned even the most negative day into a positive force, you realise that it’s not always quantity. It’s quality. Every time I say ‘Hello my name is Elin Roddy’ I think of Kate, and am grateful for the chance to have known her for the time that I did, and for what she gave to me, and to all of us. Thankyou Kate. Peace be with you.

Getting on the Bus

Getting on the Bus

‘We’re so grateful for the fact that they didn’t suffer at the end of their life’

‘Why didn’t they have a scan and a biopsy? It might have saved their life’

Sometimes it’s hard to know what ‘Doing the Right Thing’ is. Those questions could have been asked of me by relatives about exactly the same patient. In fact, they have been asked of me, repeatedly, about very similar patients. What is the difference between those patients, those relatives? Or is it me? Am I too nihilistic in my approach? Should I be more aggressive in my ordering of tests and treatments? Are their expectations reasonable or unreasonable?

We were taught, at medical school, a lot about pathology. We learned lists of causes for abnormalities of a thousand different, tiny systems. We learned rare, eponymous conditions that we should always be alert to, like constantly watching the skies for a comet that comes every few decades. We learned about things we must ‘never miss’ and about things we should ‘always think about’ – sodium, sarcoid, syphilis – all these things blend into – for me – a constant feeling of diagnostic unease.

But what do we learn about people? And how they think? And when we learn about ‘people’ do we include ourselves in that term? Or our colleagues and teachers? Somehow it felt as if we were a distinct group, separate from ‘people’ – our own foibles and fallacies were rarely addressed, and I could count on the fingers of one hand the times that my clinical teachers focused on the grey areas of medicine. Certainty was to be prized, uncertainty hidden. The diagnostic unease I spoke about earlier was to be pitied, a sign of weakness. If I didn’t know what was going on, it was because I just didn’t know enough, not because there wasn’t enough to go on.

The lectures – it was mostly lectures then, or hanging around on the wards – about people were not the popular ones. Epidemiology, psychology, sociology – these key areas of understanding – were not valued as highly as they should have been. We were used to facts. We survived on a diet of certainty and success and syndromes.

It’s taken me almost twenty years of clinical practice to realise – and be able to explain to patients, families, students, sometimes colleagues – that medicine is lots and lots and lots of grey. Not only are there far fewer certainties than I had first thought, but it is obvious that as clinicians we are affected by the same cognitive biases that influence and prime our patients and their relatives. We are human. Perhaps we should have listened a bit harder in those lectures about people.

And it is from ‘real’ people that most of the enduring lessons came. In our first year at medical school, we did something called (I think) a Family Project. This involved meeting someone who was experiencing a major life event, and following them every few weeks before writing a (horrifically naïve and judgemental, in my case) report about the experience. I was given the name and address of a woman expecting a baby. I used to get the 95 bus to visit her.

This is what I remember. She was the same age as me. She smoked a lot and I always smelt of it on the bus home. I tried to sound less southern when I talked to her. Her partner was in prison. I nearly told her two year-old this, inadvertently, because she had trusted me with information I didn’t realise was confidential. There was no carpet. On my first visit she apologised for not having any milk for tea. I didn’t realise that this was because she hadn’t felt well enough to go out and get her benefits. She said she nearly died during delivery and no-one listened to her when she told them what was happening. I wasn’t sure whether to believe her. When the baby was 4 weeks old I took it a present. She cried because it was the first present anyone had brought. I felt uncomfortable. I didn’t know whether to hug her or not. Once, her partner was there, unexpectedly, and asked me ‘who the fuck are you’. I dreaded getting the bus because I never knew what I might find.

None of my lectures had prepared me for any of this. I knew I should have valued it but frankly, I was relieved when it ended and I didn’t have to get the bus any more. I slipped easily back into my physiology textbooks, my anatomy practicals. For a while I thought that this experience was an aberration. It took me a long time to realise that this experience was the norm. The lack of context, the discomfort, the unease – this was what people were, not just syndromes to be learned or diseases to be studied.

It’s much easier to be certain than uncertain. It’s much more comfortable to surround yourself with the familiar than to seek out the unfamiliar. It’s much less hassle not to get on the bus. But for me, these days, getting on the bus means seeking out the diagnostic uncertainty in my own practice. Dealing with my own cognitive biases (I think they probably deserve a whole blog of their own) and recognising those of others – including patients and their families.

This means that ‘Doing the Right Thing’ is, unfortunately, different every time. It requires different thought, different communication, different approaches. It’s why I love what I do, and never get bored. And I realise – only now – it’s why I kept getting on the bus.

In praise of the Daily Mail

Before I joined Twitter, the Daily Mail was something of a mystery to me. It was a bit like the pet food aisle of a supermarket is to someone without any pets. You can see that it’s there, with people in it, but you just don’t need to engage with it. Those bags of cat litter and tins of meaty chunks are nothing to do with you or your lovely, pet-free life.

Then I joined Twitter and all of a sudden the Daily Mail was everywhere. The sidebar of shame, links to outrageous articles, sexist editorials – it became impossible to avoid. I tried not to click on the links, but sometimes curiosity got the better of me and I would rage against it’s ignorance and bigotry.

It was only when a concerted campaign against the Liverpool Care Pathway last year actually led to the withdrawal of the pathway as ‘a damaged brand’ that I truly recognised it’s power. And that scared me. I went back to avoiding it, not clicking on the links, burying my head in the comforting left-wing sand of the Guardian.

But last week (and I’m not going to link here, as that would be fuel to the fire – or customers to the cat food, if we can go back to the supermarket analogy for a bit) the Daily Mail published an article entitled ‘Why having so many women doctors is hurting the NHS’ by a surgeon called Meirion Thomas. Now, I’m not going to quote any of the article. Suffice to say that there were a few small islands of truth languishing in a sea of prejudice and conjecture. Also, my Dad’s name is Meirion, so I was a bit disappointed as I have always associated the name with kind and decent men who believe in equality and fairness.

However, what amazed – and pleased – me far more than the article had disconcerted me was the response.

Unusually for a personal opinion piece in the Mail, many organisations and individuals were swift and united in their condemnation of the views expressed in the article. The Royal College of Surgeons, the author’s own College, were unimpressed.

http://www.rcseng.ac.uk/news/presidents-response-to-daily-mail-article-by-professor-j-meirion-thomas

The Royal College of General Practitioners (languishing in the backwaters of medicine, according to our learned friend) were even less impressed. The fabulous Margaret McCartney wrote a two-for-the-price of one rebuttal in the Mail itself. The Royal College of Physicians of Edinburgh won the prize for brevity with a few lines that basically told us not to pay any attention to the attention-seeking behaviour. And the Royle College of Dean from NHS Employers won the prize for best headline with ‘Some People are Women, Get Over a It’ – badges and bumper stickers coming soon to an operating theatre near you.

It got me thinking. I’m a general physician in a district general hospital. In my department of over twenty physicians, three of us are women who work part-time. Between the three of us we have eight children and leadership roles for: Lung Cancer, Junior Doctors, Movement Disorders, End of Life Care, Student Support, Unscheduled Care (Deputy Medical Director), Tobacco Control, Orthogeriatrics, Tuberculosis, Clinical Coaching and COPD.

I think that’s enough ‘leaning in’ even for Sheryl Sandberg.

And rather fortuitously, I had my job planning meeting a few days after the article was published. Job planning in hospital medicine is a process whereby it is decided how much work is needed from an individual and how much time it should take them to do that work. So, fortified by the supportive articles, blogs and tweets, I decided that I would go into the meeting in a positive but realistic mood. Leaning in and juggling are almost impossible to carry out simultaneously, but many of us are doing it. The last thing that the next generation need is for us to somehow sell ourselves short, to martyr ourselves to the cause, to massively overcompensate for the perceived weakness of being less than fully committed to our patients somehow, just because we want to drop the kids off at school occasionally and get to the post office before it closes.

The meeting was – I think – a success. I came home that evening far less resentful of the extra work I had been putting it, far more enthusiastic about the leadership roles I had felt I was doing in my spare time. I felt valued, and as a result, I could see that I was likely to be far more positive and productive. ‘Wow!’ said my son. ‘You look like you’ve actually had fun at work today, Mum.’

Not fun, perhaps. I wouldn’t put it that strongly. But it was a good day. A day when I stood up not only for myself, but for future generations of women doctors who should know that it’s possible to work and to lead and to still feel that you are bringing up your own children. Daily Mail – you did that. You might not have meant to. In fact, it’s probably the exact opposite of what you had planned. But you made that happen. So thank you.

Optimistic Voices

 

‘Expect the worst, but hope for the best.’

It’s a phrase I use quite often. Sometimes I vary the order in which I say it, depending on the situation and, let’s face it, how many times I’ve said it that particular day. Some people might call it managing expectations. I call it common-sense – a quality which, my mother believes, is really the only thing a good doctor needs. I weakly try to convince her that things like knowledge and skills matter too, but have to admit that, as usual, she has a point.

When I wrote my first blog, about death, I was overwhelmed by the responses from those with whom it resonated. I still spend a lot of time dealing with the end of life. One of the comments was from a physician colleague and Twitter friend and quoted the book of Common Prayer – ‘in the midst of life we are in death’. And I felt that the converse must surely be true – that even in the midst of death we are in life. So perhaps I should write about life, for a change.

I first heard the phrase ‘expect the worst, hope for the best’ on the admissions ward in the district general hospital where I worked as a medical house officer. It was spoken, in the early hours of a weekend morning, by an experienced and wise staff nurse who stood outside the curtains surrounding one of the beds in a six-bedded bay. I was behind the curtains, trying to put a drip into an elderly patient. The patient had – I suspected – acute left ventricular failure. Their bed was illuminated by an angled wall lamp with a faulty hinge. This was throwing an inadequate pool of light which reduced my world to the patient’s forearm, on which was etched a network of uncertain veins, and the cannula in my own unsteady hand.

The nurse was explaining to the patient’s family that the situation was uncertain, that they must not be surprised if things didn’t go well. ‘I’m sure the doctor will have a word with you about things when she’s finished in there’. My world broadened out again as the cannula slipped into a vein, and I injected the frusemide and diamorphine that were drawn up in two syringes in the kidney bowl next to me. I stood up, and they looked at me expectantly, stoically. I repeated the phrase I had heard the nurse use. It struck me as kind yet realistic. They seemed content with my explanations and I left them sitting at the bedside, backlit by the same crooked light, and moved on to the next task.

The next morning, on the consultant ward round, I walked into the same bay and then out again, thinking I was in the wrong place. I had seen a patient, sat up in bed, eating toast and drinking a cup of tea. I did not imagine that this could be the moribund patient I had treated in the previous night’s darkness. But it was. The treatment for heart failure had worked and I was able to feel a profound sense of achievement, denied to many of today’s newly-qualified doctors by the advances of ACE inhibitors, coronary stenting and the European Working Time Directive. The patient’s relatives stopped me in the corridor. ‘Thank you, doctor. We did what you said, we hoped for the best, and it worked’.

I, like many doctors, self-critical and insecure, spend a lot of energy thinking about times when things don’t go well. But if I allow myself to think less critically, the memory of patients I have helped, even cured, come towards me out of the depths, like the opposite of ghosts. There has been the very occasional moment of brilliance – a rare diagnosis in a young drug user, a timely HIV test, a quick intubation, a wide-bore cannula into the second intercostal space. But most of my patients get better despite me, not because of me, really.

I remember as an SHO the young father after his first cycle of chemotherapy, collapsed in the ward treatment room, lucky enough to be in front of a haematology consultant who recognised overwhelming sepsis and murmured life-saving instructions to me whilst kneeling on the floor with his hands beneath the patient’s head – ‘cannula, now, no, not that one, a grey one. Gelo – squeeze it. Get some taz, give it to the nurse. Thank you. Now some adrenaline. Yes, from the crash trolley. Not all of it, just a mil. That’s it. Good.’ I found it hard to look at this patient when he returned to the ward, dressed in a suit, after he finished his last cycle of chemotherapy. All I could remember was the time that he lay on the tiles, his life literally in our hands. It felt uncomfortable, a reminder of the huge responsibilities that my seniors seemed to bear so lightly.

I remember the patient who was already on the Intensive Care Unit of a big teaching hospital when I started my job there, a middle-aged patient with pancreatitis and respiratory distress syndrome. Their spouse sat by the bedside, expecting the worst but hoping for the best, keeping vigil next to a bedside locker on which was placed a framed photograph of the two of them laughing at their recent wedding anniversary party, unaware of the horrors to come. They made an elegant couple, at odds with the broken pair – one in the bed, one in the chair – before me. The patient progressed very slowly – one step forward, two steps back, a line infection here, a ventilator-associated pneumonia there. Weeks passed. I went on leave, I don’t remember where, and when I returned the photo was gone and another patient lay in the bed. I presumed that the patient had died.

A fortnight later, a familiar figure appeared at the end of the unit, pushing an unfamiliar figure in a wheelchair, a scarf around their neck to hide the scar from the tracheostomy. It was my anniversary couple, coming to bring us chocolates on their way home from hospital. I was overcome with emotion, and had to hide in the staff room until I was sure that they had gone. The realisation dawned on me, cowering amongst the lockers, that making people better was more often than not a hard-won series of tiny, incremental improvements rather than a single heroic act.

And I remember, more recently, two patients we discharged from hospital on the same day. I had had the ‘expect the worst, hope for the best’ chat with both families. One was a very elderly patient who was not expected to survive but did, thanks to firm but gentle care, nurses missing their breaks to give antibiotics on time, staying late to ensure that ventilators were set up, physios going beyond the call of duty to shift stubborn phlegm. The other was a younger patient with a complex series of problems, with whose family I had chatted daily, shrugging my shoulders, tilting my head, pursing my lips, until the day when I looked behind the curtains and had the same sense of disbelief and relief I remembered from that ward round many years before.

I went home at the end of that particular day feeling a sense of achievement at life, not death. My eldest was at Cubs and the baby was in bed. I sat with my middle child on the sofa. ‘How was your day?’ Fine, she said. ‘What was the highlight of your day, Mummy?’ she asked me. A clever ploy, a question I often ask her to avoid the ‘fine, don’t know, can’t remember’ responses to the standard how was your day. I told her that I had managed to help a patient get home who I didn’t think would make it, who had a very difficult journey, who needed lots of help but who got there in the end. ‘Like Dorothy?’ she asked. My brain crunched the gears between home and work. Yes, I agreed. Like Dorothy. And I was reminded of the section of her favourite film where the travellers find their way out of the poppy field and head towards the Emerald City. The music for that section, I found out only recently, is called Optimistic Voices. Sometimes, hoping for the best really works.

 

 

Optimistic Voices

http://m.youtube.com/#/watch?v=9nq34mISKUo&desktop_uri=%2Fwatch%3F

Dying Matters

This week, it’s Dying Matters awareness week and for the first time, prompted by the amazing Kate Granger via the wonderful tool of Twitter, I have joined the blogosphere. I want to reflect on death and dying and be, in some small way, part of the changing tide that aims to sweep some of the taboo away from the difficult yet inevitable conversations around death and dying.

I think about death a lot. Not because I myself am dying, or ill, or morbid, but because I am a general physician. I spend a lot of my working life looking after patients and their families at times of real difficulty. I have been training or working as a doctor for over twenty years, and the resilience and humanity of patients, families and staff never ceases to amaze me. It becomes particularly apparent during times of real crisis, and to witness it is one of the unsung benefits of the job I do and reaffirms my faith in human nature on a daily basis.

Throughout my working life, I have been involved with death in many different guises and in many different ways. In the last few weeks, I have sat in the outpatient clinic and given the diagnosis of terminal cancer to patients and their families, and watched the light of hope flicker and die behind a patients’ eyes whilst their spouses weep silently out of their line of vision. I have waited in the door of the clinic room for the inevitable return of a grown up child who needs to ask, out of earshot, how long their parent has left, as if knowing and planning and sorting will somehow hold things at bay. I have sat at the bedside of patients who, only days before, were planning holidays or weddings or birthdays, and I have waited in silence as they accept that those plans would not be realised. I have looked into the eyes of patients who have asked me to help them die, who have told me how frightened they are, who are in pain, who are not ready, who are raging against the dying of the light. And I have looked into the eyes of those at peace, who tell me they fear nothing, who have already lived each day as if it were their last and have no regrets, no unfinished business, no unspoken words.

I have stood in the resuscitation room of the emergency department looking at scans which show unsurvivable events, moving between patient and relatives room and back again, piecing together not just a diagnosis but an idea of a life almost gone. I have huddled with relatives of dying patients in corridors, in stairwells, in car parks and explained in simple terms the most complex of ideas – that the person they love is leaving forever. I have dragged myself wearily up the stairs to the ward after a long clinic to talk to the families of patients who are too unwell or confused to know who their children are. I have sat with patients I have known since my first days as a consultant and watched them breathe their last breaths. I have stood in a side room in the twilight and exchanged quiet memories of patients with their still-present relatives after certifying them dead. I have sat in the ward staff room, surrounded by staff jumpers and health and safety notices and leftover pizza whilst the just-bereaved tell me about the loved one who was everything to them and a stranger to me. I have been to the hospital mortuary to fill in death certificates and cremation forms and watched as the cold bodies of patients I first met in clinic when they were full of warmth and optimism are pulled from the freezer. I have sat in my office and heard raw grief pouring out from relatives of patients who the system – us, me – has let down in some way. These are families whose grief is overlaid with regret and anger and guilt, and for whom the path to resolution will be tortuous. And I have sat in my office and wept for the times when I know in my heart of hearts that we haven’t done the best we could. We haven’t been as open or as honest as we should have been. We have let our desire for a ‘good outcome’ cloud our acceptance of a poor one. We have failed to diagnose dying until it’s too late. We haven’t had the difficult conversations that needed to be had because we were too busy or too scared or too uncertain. Those are the times that stick in my mind, and from which I learn the most, although as I learn I am acutely aware that this learning does not benefit those who I learn from, or make their grief any easier to bear.

At the end of each day, I come home and try and distil into meaningful, appropriate language the things I have done and the things I have seen. ‘Did you make the poorly people better, Mummy?’ the children ask. Some of them, I say. Some of them. Often my children are in bed when I get back to the sanctuary of home. I watch them sleeping and marvel at their youth, the smoothness of their skin, the absence of drips and bruises and oxygen and disease. Sometimes I creep into the baby’s room and lift her from her cot and sit in the dark with her asleep in my arms, heavy and sighing. I let her head rest on my shoulder and the weight of her seems to press out some of the sadness that I have absorbed through the day.

But the thing that runs through all of my days, particularly the ones which hold a lot of suffering, the thing they never mentioned at medical school, is not death but love. Who we love and how we love them is brought into sharp relief when the moment comes for us to be parted by death. Love is indeed a many-splendoured thing, and how we die is, I believe, a reflection of how we have loved and were loved in life. So yes, Dying Matters. And for me, a hospital physician, death and dying is a fundamental part of what I do. The Francis Report, with it’s (and the ensuing media) scrutiny of avoidable deaths, has brought into new focus that more often than not, it’s not just the dying that matters but it’s how it happens. And we need to be better, more open, more honest. So perhaps when my children ask me if I made the poorly people better, I should tell them the truth. I can’t make them all better, but for the ones who are dying, making sure that their dying happens well is one of the most important jobs I can do and something that we as medics and as humans should value more highly.

May 2013.