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Taking Charge (2)

The first time I realised how strongly I might have to stand up for myself against the hospital system was on day 4.
After I had been through the emergency system I went to a four-bed ward in general admissions. At that stage (day 2) when you are very frightened about what is happening to your body, and have no idea what the future holds, and you are in pain from something that does not yet make sense, you are just grateful to be in a reasonably comfortable bed and laying down. "Someone else can take charge; I am sure they will know what to do."
So you don’t mind being in a four-bed ward, listening to the 50 year-old man next door waiting overnight for his cholecystectomy (surgery to take out his gallbladder) the next morning. Poor fellow was obviously experiencing waves of recurrent pain, whimpering and calling out to the nursing staff for medication. Oddly, he made the most noise when he had blood taken – once in the evening, and then again the next morning. He was not happy, told the nurses it would be difficult to do, and when they had trouble getting into a vein on a couple of occasions he really let fly. He positively wailed as the needle went in each time; I had not heard that before. I guess he was just distressed overall, in pain, and this was one more assault he felt he did not need. Given the pain he was in, there might have been a degree of peripheral shutdown of circulation, with slow blood flow through not very good veins. That always makes it difficult to get into a vein, but the rules have always been that you wait until you are sure you have good vein, don’t try unless you know you can succeed, make sure you get it first time. The junior sounding nurses really struggled with him, they sounded quite anxious and perhaps a bit frustrated, and so they rushed it. After 3 attempts they still did not have blood. No explanation seemed to mollify him. I guess they later brought one of the blood ladies in; they are real experts, and ooze confidence. They wheeled him out the next morning, all prepped and a bit sedated; I hope his operation went well.
Anyway, the point is I didn’t mind the moaning and frequent rustlings, the regular observations, and the lack of sleep. I was too unwell to care. Through the day, a series of people came and took the story again and again and went over the examination, a registrar I was later to learn was the senior in neurology, a slightly harassed consultant keen to get away for the weekend (don’t blame them!), and then a junior registrar. I clearly needed to be taken over by the Neurology team, but there was no bed available on their ward. So for the time I just had to stay where I was; well, no problem.
As I said in the opening chapter, I have had the most fortunate of lives. My older son is a gastroenterologist, and his wife is an ex-Intensive Care Unit nurse, and they arrived on Saturday (Day 3) to provide support. After I had described the story, rightly or wrongly my son made contact with several specialists (including the slightly harassed one, discovered in a shopping centre) to discuss what was thought to be going on, and to find out who would take me over after the weekend. He then went through the notes to ensure his father was being looked after properly; everybody needs a champion! My daughter in law started monitoring nursing practice. You never know what impact this has on staff. Are they affronted? Does it make them anxious? Does it change subsequent attitudes to you, one way or the other? I guess what my kids were trying to do was to establish that I worked in this hospital, had some place in the world, and deserved the very best of care, and that external professionals were watching the care I got. But that is so awkward isn’t it? Doesn’t everyone have a place in the world? Doesn’t everyone deserve the very best of care? Who champions ordinary folk? Who walks with them through the system?
Anyway the traffic was beginning to build up in my area of the four-bed ward – a series of professionals but, increasingly, more of my relatives including grandchildren. I guess we were beginning to disrupt things a bit. So in the afternoon I was moved to a single room, though still on general admissions. What a relief. We had some space, a private toilet the kids could use, and could close the door to protect the ward from our hubbub. At one point there were 11 people in the room, from my father aged 90 looking sad and perplexed and a bit overwhelmed by it all, down to Oliver aged 5. “Grandma what’s that?” “It’s a wee bag.” “Oh (rather long pause). What… is that wee?” “Yes Ollie.” “Yuck… do you have to have that because you are old, Grandpa?” “Something like that, Ollie.”
Strange isn’t it? Disaster sometimes brings out the very best in us. We had one of the best family conversations sitting round the bed. We tried to work out what might have happened, but then moved on to recent events (my father’s 90th birthday party which had also brought the clan together), future dreams (a young nephew and niece just about to become parents for the first time) and the general chit chat of family members catching up. Our family has a long history of punning, so we laughed ourselves silly at such things as “You had better not make any complaints about the hospital system in your book; you wouldn’t have a leg to stand on!” There is nothing like family, and silliness, to make you forget the fear and uncertainty, and leave you warm, well-loved, and ready for a long sleep. So I settled into the depths of the land of nod about 8pm.
At 11.30pm there was a rude awakening. A wardsman (a ‘wardie’) woke me to let me know I was being moved to the Management and Planning Unit (MAPU); still no bed on Neurology. Watching someone else pack up your meagre possessions in hospital is always disconcerting. In the transfer the day before we had mislaid my joggers (not that I was likely to need them for the moment), and it had taken a bit of a hunt to track them down. Funny how such things as joggers take on a special meaning when your legs don’t work – sort of ‘joggers as talisman’. You make yourself little promises to help reinforce the challenge of recovery (“As long as I can see them I just know I will be able to use them again”). Anyway this time they were in the cupboard. So possessions, potted orchid, joggers and body made the transfer to a trolley across a 'Pat Slide', and we began the second of a number of moves.
I suppose I had thought we had made some sort of case in General Admissions (GA); I am a doctor, I work in this hospital complex, I am fortunate to be able to have private hospital cover, I am likely to get lots of visitors - family, friends, colleagues, PHD students, staff – and I would really appreciate a single room. I had already appreciated the single room in GA for about 8 hours. You don’t think clearly when you are woken from a deep sleep after only a few hours, so I didn’t think to go over that ground again. And the wardie would have had no influence anyway. His job was to translate me safely; nothing more. So I was seriously upset to find myself in another four-bedded ward, where the other 3 occupants were all women. What should I do? Should I jump up and down? Yeah right… It was past midnight by this time, so after much thought I decided to sort it out in the morning.
As often happens when you are woken from a deep sleep, I just could not get back to it. I lay there a long time listening to the chatter at the nursing station which culminated in a telephone conversation “Yes, that’s alright, we have plenty of beds at present and several single rooms.” “Several single rooms… Right.” I pressed the buzzer, explained that I had difficulty sleeping, had overheard the conversation, and asked if it were possible for me to be moved to one of the several single rooms. I went on to tell the nurse all that had happened in GA, a bit about who I was, the likelihood that we would disrupt the four-bed ward with all the comings and goings. I explained that I had put on record my wish to get a single and/or private room, and in fact had been transferred from a single private room downstairs. She explained that it was never that simple, that they might have to reserve a room for infective cases that, even if I was moved, I might have to be moved back if there was an infective case. But eventually she went to consult a superior, and within a few minutes I had been shifted to Room 20. It felt like I had won a battle. Peace, quiet, and sleep.
I guess I had just been lucky to overhear the telephone conversation. Yes, I know, you shouldn’t listen in to other people’s conversations. But in these days of mobile phones, you don’t have much choice, do you? I have even heard people making the most ordinary of arrangements whilst peeing in the loo of an airport lounge. I guess you could call it multitasking, but I often get the urge to go over and ask into the phone “Do you know what he is doing while talking with you?” Never had the courage, of course. Personally I have always been a bit too anxious to even answer the phone, on the grounds I would fumble and drop it down the loo!
What if I had not overheard the conversation? I guess I would just have stayed in the four-bed until morning and tried to work it out from there. So I guess I got lucky to overhear the conversation. But then, I did have the confidence to take the opportunity offered and follow it through – even at midnight or whenever it was. But again we need to keep asking that question – “What if I am just an ordinary person?” Would I just accept my lot, settle down and go to sleep? Would I have been allowed to change beds and rooms in the middle of the night, even if I had asked? How come no-one ever asks you about your needs? 
Peace, quiet, and sleep - until the nursing observations at 5am. And so the day unfolded. I tried to go to the toilet, and had a shower, cleaned the teeth and shaved the stubble of two days; all on a steep learning curve about how to do these things from a toilet wheelchair. Can you reach down and unlock the wheels without falling off? Can you propel yourself around the bathroom using a combination of the handrails, the basin and a plastic chair (more of this later)? Finished, I rang for a nurse and a wardie, and was lifted back into bed, fresh clothes put on, and an incontinence pad stuffed down the back of my underpants – for security. The breakfast tray arrived, was emptied and removed. My senior researcher brought coffee and discussion and The Australian (such luxury, I never get to read the newspaper); my secretary called in with some tasks left over from the previous day. A steady stream of friends, students, staff and colleagues drifted through. I was visited by the Neurology Team, examined thoroughly and warned about some of the tests that might need to be done. No sooner had they been discussed, but I was off for an echocardiograph (looking at the valves of the heart to see whether they might have fired off an embolus), or off for an Xray of my tummy, by now uncomfortably distended and inactive. That night I slept well.
I settled in to some of the ward routines, and much of the second day on MAPU was more of the same - observations taken four times a day, medications by mouth, heparin injections into the dartboard of my stomach, examinations from the team to assess progress, and my colleagues with coffee and papers. The steady stream of visitors continued, and family members came by when they could. Feeling well-loved, but exhausted again, I was just beginning to think about settling for the night when a nurse came in and announced that I was going to be moved to the Neurology ward. This time, despite the events of a pretty exhausting day, I was bit more prepared. Was I going to a single and/or private room? She bustled off to ask, and returned with the news that I was going to a four-bed ward. I must have looked fairly crestfallen, because she went into an explanation that it was not her fault, that she had no control over these things, and she was sure they would move me to a single room as soon as one became available. I explained that I understood her dilemma, but that I would not be moving unless I went to a single room. I might be incapacitated at present, and not have any power just now, but I did have some rights. I had asked for a single or private room ever since GA. Given she could not take any of the decisions, would she please ask the charge nurse to come and see me?
Several minutes later the charge nurse arrived – quite literally ringing her hands. She, too explained that it was not her fault, that she had no control over these things, and she was sure they would move me to a single room in Neurology as soon as one became available, but I just had to be moved tonight. She continued to ring her hands. I went back through my explanation… Look, I am a doctor who works in this hospital complex. Though my legs have given way, luckily my brain and the top half of me are still working well. I am not ill, just incapacitated at present. I need to continue with my job as far as I can, up till Christmas, and will continue to have a steady stream of colleagues, students, family and friends visiting me. All that would just disrupt a four-bed ward! It does not make sense to park me in a Neurology bed in a four-bed ward. I would be delighted to move once they have organised a single/private room. I wasn’t being difficult… Nurse continued to ring her hands, and went back into the fact that she had no control over these things. So I asked who controlled the process? The Bed Manager… I said that I appreciated I was making her life difficult, and asking her to decide things that she could not, so would she please ask the bed manager to come and see me. She thought he might be a very busy man, but did agree to phone and ask. She returned saying he was too busy to see me. I shrugged my shoulders. She left looking most uncomfortable and (you guessed it) still ringing her hands. I felt uncomfortable.
Half an hour later (say about 9.30pm at night) in the semi-gloom after lights out I was visited by a man in his 40s in shirt and slacks, looking harassed, slightly sweaty, with his hair all over the shop, and carrying an official looking clipboard. The Bed Manager, poor chap. I thanked him for coming and told him I understood he must be very busy. He explained that he had a job to do and that I was obstructing it. MAPU was only ever short term, and I was destined for Neurology. There was a bed on the Neurology ward, and he was determined to move me from MAPU to the four-bed ward despite my protestations. Sort of like a game of chess – Bishop to Queen’s pawn 4. Keep a deadpan face, no emotion showing. Don’t let your opponent know what you intend in three moves time. This is just a game; it’s not about people, or providing the most relaxed and happy conditions for them to get better. It is just a strategic move.
As pleasantly and gently as I could, I went back through the story ‘Look, I am a doctor who works in this hospital complex. That makes it a bit difficult for me, and there are issues of confidentiality. Though my legs have given way, my brain and top half are still working well. I am not ill, just incapacitated at present. I need to continue with my job as far as I can, up to Christmas, and will continue to have a steady stream of colleagues, students, family and friends. All that would just disrupt a four-bed ward! It does not make sense to park me in a Neurology four-bed ward. I would be delighted to move once you have organised a single/private room.’ There was more discussion, but I reiterated my position that I would be very grateful if he would find me a private room, even if I were to be an 'outlier' from Neurology on another ward for some days. If they were unable to do that, perhaps they would advise me on how to transfer to a private hospital. He asked me if I was refusing to be moved. I said I wasn’t being difficult, but yes, I refused to be moved. He shrugged his shoulders, looked even more harassed, and said as a parting shot “I will take it up with the ‘powers that be’ first thing tomorrow morning”. That sounded serious, but again I felt I had won some sort of battle – even at (by this time) 10pm at night. I slept.
The following morning, I was visited by the Nurse Unit Manager. A delightful and straightforward person, very proud of her ward and her staff, she told me that she was not sure what all the fuss had been about. She had given instructions only the morning before that, as a member of staff, my wishes for a single/private room should be respected. She apologised for all the discussion. I apologised for upsetting any of her staff (if I had), but I had kept my cool, had explained that I understood that they could not take those kind of decisions, which was why I had asked to see the bed manager. I complemented her on several members of staff (whom I named) who had been especially kind to me. She was pleased with the feedback. We parted friends, and over the next few days had a couple more discussions about systems and people.
Three days later, and with much regret given some emerging relationships with the great staff on MAPU (several of whom did martial arts of one sort or another – but more of that later), I was moved to a single room in Neurology. My neurologist called it the ‘quietest room on the ward’. Dear man has never stayed overnight in the room. It has the staff toilet on one side, the ward sluice on the other, and sits opposite the two ward storerooms where all staff congregate from time to time during the day. If you are into gossip, room 56 is the one to be in; you hear it all… Hey, I don’t really care. The door can be closed, it is private when I need it to be, and I felt comfortable (when there were up to 6 or 7 people in the room at any one time) that we are not disturbing others.
So get this! The very next day, the charge nurse came in, all business in plastic apron and rubber gloves (apparently the notice on the door, left over from the last resident, said something about barrier nursing). She did introduce herself, but then got straight down to business. “Look, I am sorry to be the bearer of bad news, but we are going to have to move you to a four-bed room. We have a palliative care patient being admitted, and both she and the relatives will need peace and quiet. I am so sorry, but I am sure you will understand.” “Yes, I do understand. I have nursed and worked with people in palliative care. I understand their needs. And I understand that I am not ill, just handicapped. But I understand that I am in a room that has been designated private, given I signed all the papers today. I am in a difficult position. I am a doctor who works in this hospital complex. That makes it a bit difficult for me, and there are issues of confidentiality. Though my legs have given way, my brain and top half are still working well. I need to continue with my job as far as I can, up to Christmas, and will continue to have a steady stream of colleagues, students, family and friends. All that would just disrupt your four-bed ward!” “You are in a private bed, but you are in the public system; I am sorry, but we are going to have to move you” (getting cross). “I am sorry too, but I refuse to be moved; you will have to find another room for your palliative care patient. I do have sympathy for them; after all I am a psychiatrist. But at this point I have to do the best that I can to provide conditions under which I can get well. If you have to move me, then I would be grateful if you or the bed manager would find another single/private room – even if I become a Neurology outlier. If you can’t do that, then I would be delighted for you to explain to me how I can be transferred to a private hospital.” “We are going to have to move you” (very angry now, to the point of having lost it). “I refuse to be moved.” “We will see” (gets up and leaves, furious). Well she has never come back, and I guess they found another room for the dying patient. I guess our nurse continues to think I am a prick!
I was certainly left feeling very uncomfortable. Was I being selfish? Probably. Did I feel guilty? A bit. Should I have responded in a different way? No. No-one else in this system is going to stand up for me. I had to be as strong as I could. I also had to be very sure not to lose my temper; this is no time for temper tantrums – just as much logic as you can muster to back up your own position. In attempting to take charge of your own care, just work out what you want to say in defence of your own position, and then repeat it like a mantra. Let everyone else get angry.
How come they just play bed chess? Well, there are some clinical situations that trump most other reasons for wanting a single bed. One is infection. There are some nasty infections around, and some can be seriously problematic for hospitals (MRSA and VRE as examples). So isolation is necessary, with barrier nursing. Another case might be a dying patient in palliative care, the situation I came across. However, in the absence of those, over and over you have to conclude that the system is about the system, not about the people or individual preference.
Actually nobody thinks about personal preference; they just do what they always do. Even if they think, they really don’t seem to care about you and your needs. That is probably a bit unfair, but I built up lots of evidence for it, the longer I stayed in hospital. I think there are also some problems being a private patient in a public system. The advice I had from my consultant was that I would get all the investigations I needed and better care staying in the public system. So I went private from the bed point of view because it was the only way I could see to try to get some privacy and, I suppose, some privilege. But actually I think it builds some resistance from staff. Nobody working in a system likes anyone to appear to have any sort of privilege. You may be a senior doctor, and have given 40 years of your life to the public system, 10 years of it in Queensland, but as a patient people want you to be the same as anyone else, and not try to act special or be special. You are just part of a system.
It is clear that the junior and/or part time nurses have no control over the systems of the hospital (and cannot be expected to negotiate anything on your behalf). You cannot get angry with them. The system demands a single room (infection, palliative care or whatever), the bed manager plays bed chess, you get moved. Even the charge nurse has no real control over these things; they are ordered to make a change and they are expected to follow through, whatever the personal cost to anyone else. Again, you can’t really get cross with them either – they are just trying to do their job, and meet competing needs. In my experience the nurse unit manager may be able to negotiate these matters, but even they can be over-ridden. So the nurses (of whatever seniority) are there to provide the best of care to the patient, but the system may, at any time, over-ride quality and/or continuity of care.
I am fascinated by the timing of these things. At least the first two episodes (from GA to MAPU, and MAPU to Neurology) were at night. What is that all about? To be truthful, I am not sure. I have had some discussion with senior staff, and they suggest that it is often best to make some changes after the daytime hours, when managing the system processes may be easier, or expectations of meeting rules may be somewhat relaxed – ie you are doing whatever under the bureaucratic radar. That may have some truth, but the question we are looking at here is the system doing things after hours. I was to learn a bit later that there is something magical about the witching hour of midnight. The system does some sort of head/bed count at midnight, presumably for funding purposes. So perhaps there is a last minute rush to get all the changes completed prior to midnight so you can become an ‘x’ statistic rather than a ‘y’ statistic. This is a somewhat nicer explanation than my own private one, which is that the system chooses to make change at a time when a patient’s resources and powers are at low ebb, and when there is less likelihood of any interference from relatives. I would love someone to disabuse me of this…
And so to the last of the battles of this sort. Actually, I am certain it will not be the last battle, but for the purposes of this chapter it is the last.
I was admitted to hospital on the 4th December, and so my rehabilitation extended through Christmas and into January. In some ways this is not a good time to be in hospital, given lots of people understandably take time off, and there are increases in numbers of temporary staff. So the medical team disappeared for several days (at least you don’t get any more tests ordered), physiotherapy stopped for 4 days (not good), and life is a bit quiet (which can be nice). I was desperate to get some time out, in my own home, with my family. So I asked the consultant whether I could have Christmas leave and stay overnight Christmas night, coming back on Boxing Day. He saw no reason why I should not be out for a day or so, and gave me permission. We had some discussion with the occupational therapist about the home; luckily we had set things up already to be wheelchair friendly on the expectation that my ageing father might end up in a wheelchair. There’s an odd comeuppance! So we felt we could sort of manage the mechanics. The physiotherapist gave me some practice at transfers for the wheelchair to the car, and we negotiated to borrow a wheelchair and a transfer slide board for the 36 hours. My wife hired a toilet chair to sit over the loo at home. A downstairs study was converted to a bedroom that ended up very successful in terms of the height of the bed, ease of access, and ability to transfer backward and forward. We were ready to go…
“We will have to discharge you and then have you re-admitted through Admissions when you get back.” So I can’t just be on leave? “No, you can take day leave. However, if you are not here at midnight, then your bed will be marked as empty, as if you have absconded. The bed manager will have the right to put someone else into the bed.” The nurse unit manager discussed the system back and forth with me, and finished by suggesting that the odds of coming back and finding someone in my bed was probably about 10%, but there was a definite risk. I thought that was an acceptable risk. I did voice the thought that if we came back and there was someone in the bed, we could just go back home to Bribie, and do the best we could… But the reality is that when you have a catheter, and lack urine and bowel control, that would make life very difficult trying to manage the whole rehab process from home; not impossible, but spitting the dummy would not be in our best interests at this time.
So by chance, the very next day an old friend from Adelaide, whose Masters degree I had supervised about 15 years previously, came visiting, and we were joking about the constant battle against the system. She just happens to be fairly senior in terms of the system. She looked at me with a grin on her face. “Just leave it to me: I’ll fix it.” And she did, apparently. God bless her. My son helped me transfer from chair to car, drove me home, and I wept as we arrived. We had a great Christmas Day en famille, I watched some of my grandchildren open their presents, we had a superb lunch including the Brussels’ sprouts I had craved, and a real Christmas pud. I soaked up home, the Japanese garden we have built over the last two years, and the sunset over the canal. I slept about 11 hours overnight in the bed at home, we managed transfers, toileting and showering. The following day we went to a family barbecue with 18 people at a cousin’s house, driving, managing transfers, being lifted in the chair to the decking at the back of their house, and feeling overly full, and well loved, arrived back to the hospital to find the bed still there. 
One funny thing... We arranged to do the transfer from car to wheelchair outside the building where I work (The Mental Health Centre), partly because of the familiarity, partly because of the access, and partly because of a nice flat surface to enable the transfer. Of course there are no Disabled car parks around the hospital, would you believe? Anyway, the Centre was empty, given it was Boxing Day; no reception staff, no people traffic. There was literally no-one in sight. There were certainly no clinics, and I imagine many of the inpatients from the upper floors had been sent home. As we arrived, we were followed up the hill closely by a grey van. As we stopped, we were challenged: “I am sorry, you can’t park here. We need access for patient transfers, and possible access for the fire brigade.” We are a transfer. I work here, have recently found my way into a wheelchair, and I am returning to hospital. We thought this would be a good quiet spot to do the transfer. “How long are you likely to be?” Well we have to go to the ward, and then my wife has to come back. 30 minutes I guess. “OK, well I guess we can trace you through your parking sticker if we have to.”
I guess they were bored and had nothing else to do. Equally they are part of a system, just doing their job, making sure that no-one gets away with anything. This is understood. But what happens if you are not able to argue the case, do not have a parking sticker on your car, or are not wearing dog-tags. You just get sent to find another place to do the transfer. We could not think of a formal place around the campus where you could safely do the transfer, and we struggled to think of a place where you could then just leave the car for 30 minutes while I was returned to the ward. I am sure someone will argue that the car park is the correct place. Is that just the system, or is it revenue driven?
Anyway one way that Jan helped our cause, and contributed to the effort to take charge, was to write a large sign on A3 paper that simply says ‘Patient Transfer’. She placed it on the dashboard in the windscreen, clever woman. Would it work? Would it be a defence of parking in an area where they might need the fire service to gain access to the building (on a bad day)? Well I guess that was all to be tested. But it felt like a small defensive move in a world full of bureaucratic battles. Luckily both Jan and I had been taught to play chess.