Walking Forward, Looking Back

by Dinah Latham

  I thought back to an earlier time with Georgie. She was stronger then and treatment was continuing. But the outlook for Georgie was never good even then: the tumour had metastasised and spread. She was undergoing heavy chemotherapy with a less than twenty per cent chance of survival. But she felt she was strong; she was going to be one who would make it.

  As she began to deteriorate, I knew that she knew things were not working, that she was not recovering as she expected and that her condition was worsening. I remember feeling decidedly angry for Georgie who had fought so hard; angry because I had never understood why cancer was the only disease I knew of where people were expected to fight. What was this insistence on fighting cancer that left patients like Georgie feeling that if treatment failed it was their fault because somehow they hadn’t fought hard enough or long enough? Georgie had indeed fought; there was nothing defeatist about her attitude.

  We began picking up the pieces and talking about Georgie’s limited prognosis, when she really knew all hope was gone.

  “They as good as promised me an extra year or two if I agreed to more treatment; to more chemo.” Georgie’s voice was loud and strident. “What the bloody hell was all that for? It’s given me sod all!”

  She had felt shocked on being told nothing more could be done. She’d hated the suspense, always wondering when the bad news might come. Now the suspense was over; Georgie hit a low point, but not for long. She very soon seemed to become more talkative than I’d known her while she was undergoing therapy – almost more lively in the face of the failed chemotherapy. We talked about how now that she didn’t have hope anymore, it was the end of living in a limbo of hope.

  “I’m sick of always wondering what’s going to come to light each time I go for another appointment,” she said. “I don’t have to wonder any more… it’s here. Why do people keep saying ‘never give up hope’ as though hope was something solid, something to cling to?” She asked the question, never expecting a reply. It hung in the air between us…

  She had felt it hovering around for so long, through one course of chemo after another, tempting her all the time. Georgie taught me a lot about the support needed, before and after, those continual appointments and the changing hope trajectory that accompanied each of them.

  Now hope had disappeared, Georgie felt almost more cheerful. It seemed it had been the hope, the suspense, that had been so hard to endure and so exhausting. We could now talk about the things she wanted to achieve in the time she had left and how we could work together to make them happen. Two close friends had taken part in Georgie’s wish list, helping her to visit some gardens she’d always wanted to see. They had worked lovingly on her garden at home so that by the time she could no longer make the stairs, she could see some beautiful displays of flowers from her bed which we positioned in front of the French windows. She made her own wish list – ‘Things to do before I die’ – and gradually we made them happen and ticked them off one by one. It even included a Chinese meal with four friends one evening around her bed about a week before she died. I made an evening visit to be sure the pain was under control before the friends arrived. It was a good evening; a treasured time for both Georgie and her friends.

  The last wish on her list was that after she died I would dress her in a particular nightdress and make sure her face was made up as she liked. She wanted to look good when she met her maker, she told me. I’d had several practices beforehand, until she was satisfied with my handiwork.

  On the night Georgie died, she had on her chosen lipstick. I went to the drawer to get the nightie. On the top, lay a little crumpled note. The writing was shaky. I could hear her voice as I read:

  ‘You didn’t give me any more days in my life, but you did put life into my days… thanks’

  I can feel the tears pricking in my eyes now as I recall the note, and push my hand deep into my pocket as if to secrete the note there. I’m thinking hard, swiftly searching for an answer as to who would do that for other Georgies now? What would be the dependency code for that extra care… the going-the-extra-mile care? It’s doubtful this would come under the heading of a ‘nursing need’.

  Patients now have to prove they have a ‘nursing need’ before the district nurse can take them on to the caseload. What constitutes a ‘nursing need’ causes considerable debate in management hierarchy. Being unable to manage your own toileting requirements does not constitute a nursing need. This absurd argument about what is nursing care and what is social care groans on continually. It’s all about budgets. If we can say there is no ‘nursing need’, then the health budget is safe and we can make sure that the social service pot pays for it and, of course, patients then have to contribute if we say it’s nothing to do with health. Needing help to get to the toilet or help getting up, getting dressed or getting to bed are now definitely not ‘nursing needs’ – they’re now categorised as ‘social care’.

  It seems that now referral to another service is the name of the game. If social services, intermediate care, rapid response or continuing care (to name but a few) can be persuaded to attend, then whoopee do! If that can’t be made to happen then the district nurse may reluctantly visit and hopefully find time to allocate the dependency code. Does anyone but a member of management want to know what a dependency code is…?

  Dependency codes allocate a certain amount of time to each visit once the ‘nursing need’ has been established – an injection would probably be fifteen minutes and a code ‘A’, while a large wound dressing would be given thirty minutes and a code ‘B’.

  The dependency code is supposed to allow management to make sure each nurse is making a sufficient number of ‘appropriate’ visits and to equalise work across a corporate caseload. This means no nurse has her own caseload anymore; her work list is picked up from the computer. It will have been allocated by a non-nurse; so, someone who allocates as per dependency code, not by patient need. This means much less continuity of care for the patient. Allocation will be according to which nurse has spare code minutes available… and, of course, all to be triaged – but don’t let’s start with that bit of gobbledygook!

  Even as I say it now, out loud with only Harriet to listen, I wonder how many of those jargon phrases would have meant anything to Martha. The sort of support Martha needed to prevent her sinking into depression, or the support that could enable a long-suffering daughter caring for an elderly mother with dementia to cope, is not classified as a ‘nursing need’ and therefore doesn’t rate a dependency code.

  * * *

  My head is dizzy with the thoughts of the ridiculousness of all that management speak. As I step it out across the field, heading for the wood, I feel anger rising in my chest.

  * * *

  These were the buzz words that meant nothing but got in the way of care; just care, that’s all we want, answering a patient’s needs rather than management’s. And yet we’re now teaching our nurses that it’s management that has to be served. The patient is secondary, well behind the needs of management and even further down the list really because feeding the computer with data has to take first priority.

  What is the meaning of the verb ‘to nurse’? Not what is ‘a nurse’ but what meaning is held within the verb? What does the task of ‘nursing’ entail? Implicit within that ‘doing’, is taking care of; looking after. This is our fundamental purpose. The intention of all who call themselves nurses is to nurse; what we do is defined by and displayed in our job title. This caring for, this nurturing, has compassion at its heart.

  My mind raced on to the care and compassion patients who died at home needed, and how often it was the listening, the being available, the making conversations possible between them and their families that made sense of what was happening, and so put meaning into last days. To be able to move a conspiracy of silence forward, to allow families to share their sadness, offers opportunities for all parties to really make the most of precious time together, to recognise the importance of endings that allow
the surviving partner or family to say their goodbyes and to cope with their grief. These were healing moments, immeasurable in value… but without a dependency code.

  Over time, where previously certain nursing treatments were only carried out in hospital, increased technical skill has been needed by district nurses to undertake these tasks at home. Many times, such techniques and changes have improved the care available to patients at home. In the ‘60s and ‘70s, patients who were dying in pain needed injections of morphine regularly. It was sometimes almost impossible to time visits and get back on the bike making sure the patient wasn’t in acute pain while waiting for the next injection. Now, together with the huge strides that have been made in our understanding and administration of analgesic drug regimens, pain management in the community has rapidly improved. We have devices that allow continuous administration of necessary drugs, enabling the patient to remain pain-free for many hours.

  These tasks would certainly be said to be a ‘nursing need’ and, therefore, can be allocated a code, but it is indisputably only part of what constitutes nursing care. If we continue to suggest that nurses should only operate at this advanced task level and we take the general caring tasks away from what they do, then we accentuate the impression that these technical tasks are what constitute nursing care. In so doing, we diminish and devalue the significance of the general, the essential, nursing care that we have now, in so many instances, taken away from nurses and allocated to social service carers.

  What are these essential nursing care tasks that we have given away to the social service department; indicating that they are no longer considered to be part of health concerns? This is the care that we know is highly valued by patients. Personal care tasks such as helping patients with toileting needs and bathing were, historically, tasks carried out by nurses. They were where we learnt about caring with dignity; where we learnt about talking to patients, finding out how they were feeling, and what was really concerning them right then. It is this sharing, when patients are at their most vulnerable, that teaches us our compassion. During this personal care patients reveal their innermost concerns and fears with us, teaching us the value of this nursing art, allowing us to match it to our technical science abilities.

  To deprive nurses of these valuable learning opportunities – engaging with patients at their most vulnerable and most dependent – robs them of soaking up the very essence of care, the core concepts of nursing, just by absorbing it through their skin. Add to this the emphasis now placed on the degree curriculum and learning to reference correctly we shouldn’t be surprised that the profession is now discussing how we can select people for nursing who are compassionate and who understand the meaning of dignity? How very sad all this is, when it’s all there, with every patient ready to show us how to supply all those vital skills that are so important to patients but almost impossible to measure.

  I believe it was Einstein who said,

  ‘Experience is knowledge. All else is information.’

  Who has decided that what is measurable is good? If it can’t be measured, documented, made into figures for management, then the care task is considered to be without value and… thus unworthy of a dependency code.

  This approach developed when the profession concluded that to manage nurses, to move away from ‘hands-on’ nursing, was a really important job that could realise monetary rewards way beyond those afforded to their uniformed brethren. So, stepping into management, rather than delivering direct patient care, became the name of the game, with all its attention on figures and statistics, with bonuses being awarded for ‘saving money’. That translated into a reduction in the practical workforce that of course released funds… probably for more managers.

  Was I just refusing to accept that change happens, that change is good? I think back to my view of the garden just now and the climber I had noted on the wall by the French windows. It looked much taller than a few years ago at my party. Change happens: things grow and develop. I remember how it looks, top heavy now, almost as though it has outgrown its strength. The bed it is planted in, between the patio slabs and the wall, is too narrow for the root system to extend sufficiently to support the increasing foliage above. It’s struggling and needs some really good mulch and TLC to enable it to survive. Would district nursing survive, or would management targets continue to choke and threaten its very existence, let alone the quality of care it provides?

  * * *

  Harriet is quite a way ahead of me as we enter the wood and I feel a sudden chill as I tighten my scarf around my neck and zip my jacket right up. My pace is now slow and laboured as I try to adjust to an ache in the pit of my stomach prompted by this deliberation.

  I try hard to pull my mind away from my garden view.

  * * *

  I felt a warm glow as I remembered the event, but was aware of a bitter sweetness amongst the memories; a realisation that this heavy feeling of sadness was here to stay. We have lost touch with a better time in nursing: a time never to return. It feels like a bereavement; like a wave of grief sweeping aside the joyfulness when I’d first glimpsed the garden with its loaded memories of the party.

  Grief and fear are the closest of bedfellows; am I grieving the loss of this valuable healing art or fearful for a world that doesn’t even recognise what has gone?

  Increasingly, I’d felt I was struggling to hold the sea back from covering England and I’d failed abysmally. The tide of management wants, instead of patients’ needs, continues to rush in and is continually beating against the cliff of care, wearing it away, until finally whole areas crumble to be reclaimed by the sea. We all then just stay away from the edge; we don’t get too close, we don’t even look over, so that we don’t have to admit what’s happening. We don’t then have to see the whole chunks of cliff that have been worn away. Are we failing right now to recognise the real care that’s missing, that’s being eroded away under our noses?

  It seems that, with the rise in technology, we’ve dismissed the basic nursing truth that sensitive nursing care does make a difference. Therapeutic relationships in nursing make patients feel better; these relationships are built when patients are at their most vulnerable.

  “When a nurse encounters another, something happens.

  What occurs is never a neutral event.

  A pulse taken, words exchanged, a touch, a healing moment…

  Two persons are never the same.”

  (Dossey, Keegan, Guzzetta and Kolkmeier 1995)

  12

  HERDING, HOLIDAYS AND HEARSAY

  We’re having a really good walk today around some beautiful countryside in Lancashire. I’ve spread my wings and come up here for another sheepherding holiday. Absolutely blissful: Harriet and I with a field of sheep to ourselves for a week – my favourite sheep too, Herdwicks, so we can practise all we’ve learnt several times a day with some instruction in the morning to help us along and put us right. To be fair, it’s mostly me who’s being instructed; apparently I’m not listening to (watching) the signals Harriet is giving me. I’m also reminded that Harriet can read what the sheep are doing better than I ever will and that if I learn to read her signals better, I’ll be in a position to help her carry out what I’m wanting her to do: to get her to interpret the signals and whistles I’m giving her.

  I can’t quite believe I’m here now, identifying Herdwick sheep, when, just a couple of years ago, if you’d asked me anything about sheep, I would have supposed they were all either white or sometimes black with lots of wool all over and a leg at each corner.

  It also occurs to me, as we walk along a high ridge looking down over the green valley with sheep everywhere, that if I were to reflect now on any regrets in my life, there may be sadness that I haven’t managed to own a field with my own sheep – hardly likely to become reality for someone whose finances run to owning a one-bedroom flat with a postage stamp patio that just manages to include one garden chair! However, I ruminate on how this week of sheepherding is a w
onderful second best to owning a field of sheep of my own and how wonderful a cup of coffee tastes sitting on my patio on a very early sunny spring morning. We stride on together, Harriet with her nose sniffing everything, only breaking off every now and then to roll over on her back and jiggle about.

  * * *

  I admonish myself for ever thinking I want more than I’ve already got in life, and I hear one of my mum’s phrases resounding in my head…

  “Don’t want what you can be happy with but rather learn to be happy with what you’ve got.”

  But even as I hear that, I find my mind playing with the idea of how my life might have been different had I gone into sheepherding at an early age and eventually got as far as owning and working my own sheep. Strangely, the more we do it the more the everyday farming-type tasks I do with Harriet bring me great feelings of achievement and satisfaction.

  Somehow ‘peaks’ of teaching Harriet to bring the sheep into the pen or to herd them down the run, maybe to get them out of a tricky corner, all seem to take precedence for me over any ideas of competing in sheepdog trials. I seem to just want her to be a good farm dog.

  It’s almost as though the unclimbed peak where I might want to plant my flag has changed over the time I’ve got involved in this hobby. Even more extraordinary, it doesn’t seem right to call it a hobby anymore – which is ridiculous because that is exactly what it is – but it’s as though I want it to be Harriet’s and my job of work.

  These thoughts all assembled together in my head after I overheard a comment from my kids. They had accompanied me on my sheepherding holiday; all going off doing their own thing in the surrounding area. They went walking, biking, visiting local towns, and the rest, while Harriet and I worked our sheep. It was great to be with them and to share lovely meals together in the farmhouse-like kitchen. Even more so since they did most of the cooking and are somewhat more accomplished in the culinary department than I am. To listen to them bantering with one another, laughing at all the ‘in’ family jokes, and all enjoying their break from their various employments, was reminiscent of Christmas gatherings and I am reminded again of how lucky I am to have them with me.