Saturday, 5 August 2017

Doctors and Nurses

I got a message the other day. It was from a woman called Christine. My brother and I had made friends with Christine and her husband Bill, who was a patient in the oncology ward along with my brother. As you can probably guess, the news was not good. Bill had died.

I had succeeded up until then in remembering only the more positive side of the weeks my brother spent in hospital, in thinking only of the many admirable doctors and nurses who took care of him there - the huge mental efforts made by the specialists to work out how to make my brother better, the kindness and skill of so many of the nurses.

But, sadly, it wasn't all like that, as I had chosen to forget until I heard of Bill's death. Instead, the experience was, perhaps as always when humans are trying to achieve something within a large, impersonal organisation, a muddle of good, not so good and downright terrible. Those in the system who were dedicated and marvellous were far too often let down by their less committed colleagues. Mattresses deflated - “They send us a flawed one in every batch”, “I forgot that if I unplugged it, this would happen” - leaving my brother's frail, painwracked body resting on a hard metal frame for far too long. Agency nurses discussed their social lives over him, as if he were not a living thing; instead of concentrating on this ill human being, they discussed parties and television and thus neglected to bear in mind that his feet and ankles were so painful that even brushing against them was excruciating; consequently, it was often the porters - the lowest of the low in the hieararchy, but many of them in fact truly angelic - who had to remind the more careless nurses to be kind.

There was the unforgivable Monday when, the pharmacy having been closed - as always - over the weekend, the oncology ward ran out of painkilling drugs for several long, long hours. There was the Northern Englishwoman in the basement who had scanned my brother so many times that she couldn't really have failed to recognise him as he came down for scan No. 7 or 8. Yet she not only refused to respond with any kind of warmth to his cheery greeting but managed to almost strangle him by starting to drag his bed towards her office, without first taking the trouble to notice that he was connected to the oxygen supply on the wall behind him. And when I yelped to her that she needed to stop, that the cord was tightening round his neck, she just looked irritated. She showed no compassion; no contrition; she didn't say sorry or acknowledge that she had done something rather alarming. Recalling that incident, remembering that woman, I think I understand why I've decided until now not to remember the bad stuff.

That woman was an exception though, in the sense that generally it wasn't the business-hours day-staff at the hospital who caused the moments of real misery and pain. The biggest recurring problem, the dread, was always what would happen during the night time, the weekends and the public holidays. Too often the shifts at these times were staffed by people who seemed to be doing their work purely because they needed the money, (a factor of course in why anyone works but in the caring professions never a good one to have as your main motivation). These were people who very, very often didn't have very good English - the best example I can give of this being a problem is to point to what happened three nights before my brother died, which I only learnt about the following morning when a nurse came to talk to him. She began by telling him that she understood that he had had a bad experience with a couple of nurses in the early hours of the morning and she would like to know what had happened, in order to avoid a similar situation occurring again. My brother was reluctant to dob and also very weak (plus, judging by his tone, he felt somewhat hurt and humiliated by the experience, which had been close to nightmarish  and something he rather wanted to forget). Eventually though he agreed to explain what had happened; the conversation that followed went along these lines:

My Bro - They just seemed to be very lackadaisical and they were quite rough - they were just manhandling me a bit. I'd been told I was allowed to have fentanyl whenever I wanted to and so I asked for it. They told me I couldn't have it until two o'clock the next afternoon, which went against everything my doctor had told me - and he has just confirmed that
Nurse - I'm afraid that was a matter of poor charting, so your change in intake hadn't been charted
My Bro - But some nurses are kind and try to find out whether there has been a misunderstanding; these had such poor English that it came out as terribly dogmatic "No, you no can have it - no, no, tomorrow only. Two o'clock - not before, no."
Nurse - I think that is a bit of a language barrier. It is very hard.
My Bro - So I was in physical pain and there was a big language barrier. We spent yesterday discussing the fact that I am going to die soon and sorting out my treatment in the face of that, so most people here know that I do not have much time left on earth
Nurse - I don't think it was intentional that they were being a bit rough . It just shows how important communication is.

When I suggest that it was partly a result of the language barrier that many of the non-english speaking nurses didn't have enough compassion and insight to be good at the job of caring for the very ill, I should emphasise that this is not an anti-foreigner argument, as it works in both directions. One of my most horrible memories of that time is an incident where the language barrier seemed to create a reverse problem, with equally bad results. This memory involves a Chinese man who didn't have good English and who kept calling out that he needed a commode; somehow the nurse assigned to him, not a Chinese speaker himself, didn't appreciate the urgency, despite the man's repeated calls, which were perfectly clear, but accented - “Poo, I need do poo”, he called, “Yeah, mate be there in a minute”, the nurse,  replied, “No poo, I need poo now”, “Yeah, mate, coming”, then the saddest of sighs from behind the Chinese man's bed curtains and the whispered words, “Too late”. No one should have to suffer that kind of humiliation, least of all when very, very ill.

In addition, I must emphasise that I am not contending that the less dedicated members of staff are wicked people – I wouldn't have enough compassion and insight and patience to be a nurse and I certainly wouldn't try to do the job in a country where I was not a native speaker of the language. I think what I am suggesting is that the selection procedures for and training of nursing staff need to be focussed much, much more on very intent listening, on establishing a relationship with each patient, on being attuned to the patients' individual needs, on putting aside and forgetting one's own preoccupations for the duration of the hours at work and being able to understand and make oneself understood. I have to admit that for a while I did believe that it was thoughtless negligence that hastened my brother's death; now I am almost convinced that he was being attacked by something truly vicious, but I still cannot forget the weekend when he was left in extreme discomfort and, as it turned out, danger, because agency nursing staff were too careless to listen to him or too ignorant to understand that the drain to his chest cavity had been blocked for some time and he was essentially almost drowning in the fluid building up around his lungs.

To play the devil's advocate, I must admit that some patients might induce a sense of hopelessness in hospital staff and lead good professionals to become apathetic. I will never forget the young man who was brought into the oncology ward to begin an urgent series of chemotherapy treatments. He was from Wollongong and because it was a holiday weekend, the hospital up there was unable to start him off and so he was brought down to Sydney to get things going. His young partner told everyone who cared to listen that his chemo was due to finish at almost exactly the same time that their first baby was due to be born. Given this, I was particularly shocked when, at the end of the holiday weekend they were packing up to go back to Wollongong and I heard him ask this young woman whether his smokes were in the car.

Yes”, she replied, “I knew if I didn't bring them, you'd just make me stop at the servo to get some.”

He smiled. “I haven't had a smoke since I came in here”, he told her, “I reckon that's what's been making me feel so crook, not the chemo.”

And there was the afternoon when I was sitting in a courtyard, waiting for something to be finished being done to my brother. A man came out in an electric wheelchair, a tangle of drip lines swinging as he rolled along. I was surprised when he didn't park himself at a table but headed straight for the drain outlet in the courtyard's paving. All became clear when he pulled a packet of cigarettes and a lighter from his pocket, lit up, inhaled deeply and then vomited down the drain. He repeated this procedure several times, then dropped the cigarette stub down the drain, where presumably he knew his vomit would safely extinguish it, and steered himself back in doors.

But my brother wasn't like that. In fact, I'd say he was an ideal patient. But, except when he was in ICU, where there is not a single member of staff you cannot trust literally with your life – if only everywhere in hospitals such standards could be across the board normal – he was not always treated as well as he should have been. Whenever I left him behind in the hospital, I felt fearful, because not all the staff, especially at night time, were people I felt total confidence in.

To reiterate, because I do not want anyone to get the wrong idea: I definitely am not talking about any of those superb individuals who work in the hospital system who, when I think of them now, bring tears of gratitude to my eyes because of their kindness, their comforting presences, their total concentration on doing everything they can to make their patients better or at least to ease their time as patients. I am talking about the people who betray their best efforts, the B team nurses, those who I suspect are employed because not enough money or resources goes into properly understanding the standard of care that is essential from nurses. 

And I am also talking about hospitals themselves, great blundering, many-tentacled organisms, where things operate mysteriously from time to time. I think of the way in which, without explanation or communication, things would occasionally be allowed to drift for a day or two; in these interludes, when no one came to see my brother to explain where things stood and what was planned, it was frightening; he ended up feeling that he had been abandoned, that, although no one had told him, there was in fact no longer any plan for his treatment and possibly no longer any belief that treatment would make a difference. 

As I say, those times were frightening, but there were also the days when too much was arranged. The common factor linking both kinds of days was lack of communication: without any warning or consultation, three separate scans or radiotherapy sessions would be scheduled and three porters would arrive to take him off at exactly the same time or, in some ways worse still, one almost immediately after the other, so that he became exhausted, heaved about from place to place, knocked and shoved, given no chance to rest. And there was the time when at nine thirty at night he was suddenly moved to a new ward, without it having been mentioned that this was going to happen. 

There is also the crazy situation with patients' televisions. A set has been suspended from the ceiling above each patient's bed in most of the hospitals I've seen inside of in the past few years - not only in Australia but also in the United Kingdom. All fine and good - but why on earth did each hospital administration, when it agreed to install these things, not also ensure that headphones were supplied for every television, to prevent patients in adjoining beds from being disturbed by their neighbour's viewing preferences? This is just a mad scheme and it is baffling that hospital administrations everywhere seem to allow it. It cannot be good for anyone's recovery from illness to be forced to listen to television broadcasts when trying to rest. 

Within the larger mystery that was the hospital, there was also the pharmacy, which operated on a business hours only timetable and refused to acquiesce to the palliative doctors when they wanted half dosages of certain drugs - there seemed to be some kind of running battle going on regarding this issue,  as if someone in a nine-to-five pharmacy would have a better understanding of what was needed by patients than the people working up in the wards with those patients.

Anyway, one morning Bill arrived on the oncology ward. He was a commodity that cannot be bought or trained. He was a natural. He was sick as a dog but he cheered up the whole ward anyway. What must he have been like when he was healthy? Because, although I don't really understand how he did it, while he was there, that dire place seemed brighter. And although he had never heard of my brother – his wife was terribly apologetic about the fact that they never looked at or listened to the ABC – he took to him. Indeed, they took to each other. And as things got darker, as it became more obvious which way we were headed, Bill was very kind to me as well.

I should end by yet again emphasising that the majority of the care at the Prince of Wales Hospital is magnificent, that where it is let down, it is let down by 1) a problem of the larger health system, where insufficient thought has been given to the fact that the never-ending round-the-clock need for provision of care is inconsistent with a Monday-to-Friday, nine-to-five system and 2) lack of funds, which leads to the employment of less than optimal staff at times. 

I think that the first issue is something common to many health systems; it needs to be addressed urgently but cannot be by individuals outside the system itself. The second issue though is something that we can do something about. In that context, my daughter is running in the City-to-Surf next weekend to raise money for the Prince of Wales Hospital. If you would like to donate something toward supporting the many, many excellent people who work in that hospital and possibly funding the employment of more of that calibre, you can do so here

In the meantime, vale Bill. You were a great human being.

8 comments:

  1. Thank you for writing this, so eloquently. Our family's experience is sadly similar but we had the benefit of a sister who is a very competent nurse. She helped us navigate the system, have the courage to speak up when things didn't look right and semi trained a few of us to give some additional nursing care. I pity those who do not have an advocate to assist and protect them when they are so vulnerable.

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    1. Thank you so much Carolyn. As I say, there were so many, many great people taking care of my brother; they were let down by lack of continuity of superb care. The hospital system is ill served by a few; assessing who works in a hospital should not involve only qualifications but also less tangible things, most important a demonstrable empathy for suffering human beings.

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  2. Yes, something has gone wrong with the modern hospital. Instead of a ward of long-established nursing staff, ruled with a rod of iron by a matron, hospitals now seem to have a transient population of agency nurses, some of whom speak poor English. My father-in-law died after a couple of agency nurses decided to give each other an unofficial break during the nightshift in a critical care ward. When he couldn't breathe, there was nobody around to give him a lifesaving tracheotomy and he was brain dead before anyone noticed. After the official enquiry and public apology, the hospital changed its procedures, but I wondered how they had got to a point where post-op patients had become so vulnerable.

    My father also died as a result of NHS negligence and was kept in conditions that, under different circumstances, would have counted as torture. I'm still haunted by it and wonder if I could have done more, but I felt largely impotent in the face of a large, bureaucratic organisation.

    But in spite of this, I also saw many dedicated, caring and very professional staff who coped with the most awful situations with humour and stoicism. I felt that they were let down by a system that had become obsessed with economies of scale rather than patient-centered care. I'm not sure what the answer is and I expect some of my views have been formed during repeat viewings of Carry on Nurse. I have a sentimental attachment of the idea of a cottage hospital and appreciate that this isn't practical. However, it would be good to see a return to the continuity and intimacy of a traditional hospital.

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    1. I am so sorry such truly terrible things happened to your family. I think it is impossible not to be haunted by these kinds of events. One of the things that makes me particularly sad is the way what we hoped for dwindled away - the narrowing of possibilities. I was surprised by the strange compromises my mind could make, or perhaps I mean the way my perspective kept shifting, so that a prognosis of nine to twelve months at first looked horrifying, but, before I knew it, it had vanished and seemed like a wonderful lost possiblity. When my brother was first admitted, I thought within a week I'd be driving him down to my mother's farm to convalesce; as time went by the wished for outcome became a smaller and smaller thing, until eventually we understood that he was never going to leave the hospital again, not even get outside and across the road for a cup of coffee and a moment in the outside world. Then he was gone.

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    2. By the way, in my mother's local town there is a small hospital, (constantly under threat of closure). It is wonderful and works really well. If there was a will, I'm sure it would not be impossible to return to that model for a great deal of treatment, but managers like big centralised organisations, I think. I also think too much money is spent on management in hospitals - the managers are usually not medically trained or experienced in dealing with the problems that arise in wards, so I don't understand how they are qualified to make decisions.

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    3. But I should add that I think many modern problems are created by the increased managerialisation, if that's a word, of so many things

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  3. Thank you Zoe - so much craziness, so little money. Appreciate that you've taken so much time to write this excellent article. I've been taking care of my mother's health for years, and whilst fortunately she hasn't been in a critical condition, the good, bad and ugly you write about has been evident.

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    1. You are doing such a good thing - I hope you are supported by others and that your mother shows her appreciation. It can be hard otherwise

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