When a registered nurse becomes a cancer patient in the NZ health system

via Stuff

Guest post

What on Earth has happened to nursing in New Zealand? It is almost 30 years since I finished my nursing training in 1987 at what at the time felt like the advanced age of 21. To my total surprise, I was the top graduate in my year, singled out not so much for my academic results which were good but not excellent, as for my ability to empathise with my clients and anticipate their needs, providing resourceful, holistic nursing with each unique, individual patient and their loved ones sitting firmly in the centre of their care. For 3 intense years we had learned anatomy, physiology, pathophysiology and most importantly the Nursing Process. We wrote literally hundreds of CARE plans for an endless variety of client centred scenarios with the establishment of a trusting therapeutic relationship as one of our primary objectives. We were trained as Comprehensive nurses, meaning that we were trained extremely holistically in what was then called client centred care. Comprehensive Nurses are General, Obstetric and Psychiatric nurses all rolled in to one. Emotional, psychological and physical well being were known to be intrinsically connected and inseparable. We cared enormously about the care we provided and it was collaborative. Unless our patients were critically ill or somehow unresponsive, we discussed and made plans for their care with their informed consent, input and understanding.

I am uncertain of the training paradigm and curriculum of more recent years. What I am sure of however, is that having been both a patient and a visitor in both the public and private systems over the last 14 months, that the work of nurses seems to have changed dramatically. I am going to be frank here. To my trained and experienced eye, many nurses appear to be very slack in their commitment to even “good enough” nursing care . Nursing care as I know it is guided by compassion (that is the desire to mitigate suffering), an understanding of the complexities of the human mind and body, of medicine, of risk/benefit analysis and of the potential impact of one individual upon another. Some nurses today still stand out as vibrant examples of excellence, but in my observation they are in the minority. How the majority are signed off on clinical competencies is simply beyond me. I have witnessed many, many nurses do little other on a shift than hand out medications, perform “tasks” with minimal if any acknowledgement of the patient as a sentient being and document observations taken by a machine. It certainly appears to me that nursing in our big hospitals is now task centred, not client/ patient centred. I am keen to learn why this is. I tell myself it is solely due to lack of funding and short staffing and whilst it may well have started out that way I suspect it has become somewhat normalised now. I have seen so many nurses standing around doing nothing when they could have been actively making a positive difference. I am all for mini breaks and good collegial relationships but not as the primary past time whilst being paid by the state to care for the vulnerable and needy. And it is not only in the public system that I have observed this listlessness.

In May last year I found a breast lump and embarked on a frightening and thoroughly debilitating ride through the full gamut of breast cancer treatment. Because I had medical insurance and some money in the bank, saved painstakingly over many years for my BIG OE, I opted to have my mastectomy, axillary clearance and immediate breast reconstruction in the private system. My surgeons were undoubtedly wonderful and I have nothing but praise for them.The breast care nurse attached to their practice visited me once in the ward post operatively to hand me a card with my post op appointment time for day 7, by which time I would be an outpatient. As I journeyed through the post op period and into the hell ride that is Chemotherapy, it became very apparent to me that I had somehow slipped through the cracks when it came to the nursing care that could and in my opinion should have been provided. Where were the referrals to the NZ Breast Cancer Foundation and the Cancer Society? To Physiotherapists and Lymphedema specialists? Where was the list of resources to provide holistic support at a time of massive disruption to life for me and my family? Why was I not notified of the imperative lymph node mapping appointment the day prior to my surgery? Why were no blood tests ordered prior to a major 9 hour operation? Why did I have to do all of the research, initiate my own referrals and seek out support networks myself whilst being so very unwell?

For the most part, the inpatient care at the private surgical hospital was very good. Apart from being discharged what for me was probably a day or two too soon, I have no complaints. Two or three nurses out of perhaps ten provided what I would consider to be excellent nursing care, taking care to make things better not worse both physically and emotionally. When I thanked one of these young woman for this, she replied, “ Well, I just think what I would want and need if it was me in your situation.” And there it is. Taking the time to consider this for even a moment can act as a wonderful guide even for someone with no training at all. Combine this attitude with a nursing degree, some life experience and the willingness to work hard and go beyond providing the bare minimum of care and you get what can only be described as the current upper echelon of nursing in New Zealand.

By week four post operatively, I had received a letter from the hospital inviting me to an orientation for new chemotherapy patients. My mother and I attended along with perhaps 30 other similarly shell shocked patients and their family members as we were taken through the fundamentals of becoming a chemotherapy recipient. To my delight, I was introduced to my own personal cancer support Nurse, who whilst in a huge rush, announced with pride that her organisation would provide the most wonderful wraparound care and support. I was delighted, relieved and hopeful in hearing these words.

Several weeks later, I received a call from her asking if she could visit me at home. I agreed with a sense of eager anticipation, thrilled that the nursing support was finally about to kick in. The appointment coincided with a “good” post chemo day in which 3 girlfriends had come for a sunny spring outdoor lunch. I assured the visiting nurse that the girls were fine to continue lunch without me whilst we had what I thought was to be the initial assessment/ getting to know each other visit. To my surprise she told me that she wouldn’t keep me but that she had a consent form for me to sign regarding the sharing of clinical records… Oh please keep me, I thought as she busied herself to leave. “Actually, I have some questions for you” I said and pretty much fired them off at her forcing her to do what I thought must surely be an integral part of her job.

I did not see her again over the 6 months of chemotherapy that followed. The occasional message was left on my answerphone asking me if there was anything she could do. At no point had she told me of the services that were available, so it was a little difficult to know what to ask for. Towards the end of chemo, when I was beyond fatigued and extremely unwell she announced that she could arrange for some frozen meals to be made available for collection at the headquarters in the city. I did take her up on this with appreciation. Oh and did I need some petrol vouchers for the frequent long distance travel (that was now over)?

I have nursed on and off for 30 years. In this time I have without fail sought to provide nothing less than excellent care. I have listened in earnest to hundreds, perhaps thousands of patients. I have responded with resourcefulness and flexibility to ensure that no stone is left unturned in meeting their requirements and beyond. I have made mistakes over which I have felt mortified, because I know that when need is great, the smallest things can be the big things. I accept that I am a perfectionist and that I have pushed myself hard and been hard on myself. This has created a degree of anxiety about my work. About getting it right and never, ever making a bad situation worse. I know that on occasion I have made a bad situation worse through being so phenomenally busy and under resourced in the public system that despite my best intentions I have been unable to do the work of two Registered Nurses. I have enormous empathy and support for all of the health professionals who genuinely find themselves in this high stress predicament.

Last week, I spent many hours in one of our largest public hospitals visiting my friend Emma who has a rare and complex inherited disease. This disease has excruciatingly painful and debilitating effects on most of her body systems and will undoubtedly shorten Emma’s life span. Despite enormous, relentless pain and suffering, multiple allergies and multi system failures, Emma, a trained counsellor, remains resourceful, articulate, compassionate and surprisingly patient and positive. Because she has so often experienced the fallout from late medication rounds and rough physical handling, she tends to remain as independent as possible even when admitted to a ward for specialist assessment or intervention. She does her own meds, provides her own food due to multiple allergies, manages her own suprapubic catheter and is extremely reluctant to “ring the bell.” This does not mean that she doesn’t desperately need help, it simply means that poor quality care has backfired too many times and she is terrified of an already insufferable situation being made even worse.

I had the opportunity, from where I was sitting to observe her afternoon shift nurse over many hours. Apart from the briefest possible introduction and a rather rude interrogation (Why you have neck brace? Why you have wheelchair? Why you have catheter?) she was not seen again for the duration of what I assume was an eight hour shift. It was all I could do to not go out and ask, while she stood for very long periods chatting and laughing with a colleague, if she had even looked at Emma’s extensive medical file, or read her diagnosis and care plan at the very least? Bear in mind that when I arrived to visit Emma her call bell had not been placed within her reach and in 48 hours she had been offered no assistance with activities of daily living.

This is not nursing. This is taking the Mickey. This is getting away with doing the bare minimum, in this case nothing, whilst getting paid the same as the night nurse who came on duty later and sat down with Emma, gently getting to know her needs and doing all she could to meet them as the dimly lit night drew out in protracted insomnia and physical agony for one of the most beautiful people I know.

Yes, I am angry. I am angry that people suffer unnecessarily. I am angry that I have tried so hard for so long and have completely burned myself out, perhaps even made myself seriously ill, whilst others cruise and people who deserve so much better suffer needlessly.

Last year, I had 6 rounds of chemotherapy over 18 weeks and in all but one of those horrible visits I was attended to by male immigrant nurses all of whom were warm, respectful and utterly professional with a very high regard for the comfort, safety and wellbeing of all of their patients. The breast cancer specialist nurse assigned to me was infallible in her attentiveness, communication, professionalism and responsiveness. They were all shining, guiding beacons of excellence.

Unfortunately, on the flip side of this, for the 5th chemo round, my nurse was a young woman who did not introduce herself to me, did not explain anything she was doing “to” me, repeatedly called me “my love,” talked about me to her colleague as though I was not there, despite standing only 1 metre away from me, all the while dusting her surroundings with a trail of dandruff! I can only assume that for some people, completing the required physical tasks of the shift is deemed enough these days and that basic respect and communication are absolutely dispensable. Why did I not write a letter of complaint? I was just too unwell and by the time I was well enough it seemed like ancient history.

Last but not least in this much needed debriefing comes a reflection on two inpatient stays for me when I was undergoing breast cancer treatment. Whilst an inpatient with pyrexia of unknown origin and severe musculoskeletal pains as a side effect of one of my chemo drugs, I had to ask 3 different nurses over the course of 3 hours for pain relief. Why the first two did not deliver, I have no idea, but the 3rd was rapid and apologetic in getting it to me. Another brief stay with neurological side effects rendering me completely dependent saw me waiting 12 hours, from ordering, for intravenous fluids to be started. During this stay I initially saw very little of any nurses but did have a very attentive health care assistant who to my huge gratitude responded rapidly to my call bell on several occasions. The next day I was stunned by the extensive and wonderful care I received from an older nurse in comparison to the general standard or lack of nursing care. It took us both some time to click that we had actually trained together and when we had a brief chat about what has changed in nursing, she told me that she probably wouldn’t choose to stay in that particular job as she had been told by her superiors that she “ cared too much and took too much time with people.” What more can I say? What is going so horribly wrong? Is it all about health funding? Why have the standards slipped so horrendously? Why are beds not made, patients not assisted with hygiene? Why are critical medications not delivered in a timely manner? Why were my IV fluids charted at middy and not started until midnight? Why the complacency? Why did someone ring an ambulance from their hospital bed when their call bell was not being responded to? Perhaps that is an urban legend, but somehow I doubt it. Any answers?

In all fields and across all cohorts there will always be a continuum of those who do their best through to those who try to get away with the bare minimum. There will be those who make mistakes simply because the exhausting workload is beyond the capabilities of one individual and the blame for this cannot be laid at the feet of these people alone. These people need forgiveness and support for of course we are all human and fallible. As I have made patently clear, the nurses whom I perceive as neglectful are those who do not appear to be trying very hard at all. Nursing is hard work. It requires the heart, body and mind to synchronise and strive and when this is not understood and appreciated, when tasks are performed inefficiently ( or not at all ) and without any heart, frankly, as patients, we would be better off in the care of reliable robots.

I believe that in writing this I have been as honest and as fair as possible in describing that which I have experienced and observed. I am also mindful that this is a first world country with a rapid population explosion for which we do not have the infrastructure. I am appreciative of the fact that we do have “free” tax payer funded healthcare and of those who make a concerted effort to carry out their jobs with dedication and professionalism. I am equally horrified at how easy it is to fall through the cracks and be virtually neglected in the system as so called professionals get away with working to appallingly low standards. Apart from observe and write about this, I don’t know what to do. I am not a researcher or a political activist. I am a nurse who is experiencing a profound degree of disappointment in the behaviour of many of my peers. I want and need to know if the system is failing them or if they are they failing the system? Given that nothing is black and white I will suppose that this is a mutually impelling, downward spiral of grey.

How will these experiences and observations impact on my future work? In the past, observing people working below the required standards always fuelled me to strive for betterment. It reminded me of why I did what I did, and why I did it with untold compassion and painstaking attention to detail. I was not someone prone to complaining or dobbing people in, but observing shortcomings tended to make me just want to up my own game, as if I could somehow nullify that which I was so loathe to accept as reality. Perhaps in hindsight I should have been a squeaky wheel but it never was my style. Now, I am tired and disillusioned. Obviously I still have to work, yet I am really uncertain about returning to nursing after my illness. The fire in my belly, the fire that drove a 30 year nursing career is barely flickering now. Do I still want a part of this?

Maybe it’s a yes, I realise as I write. I realise I am still inspired by compassion and excellence. The small number of nurses whom I have greatly admired and deeply appreciated throughout my ghastly ordeal with cancer are my role models and my inspiration. Perhaps their gifts to me can still be mine to others. The realisation that as a patient, I pretty much have to accept whatever I am given is on the one hand humbling. On the other it becomes a driving force to step up and speak out against this unacceptable complacency within parts of the profession in NZ. If I do return to nursing I know one thing for sure; I will be gentler on myself. I will fully own and acknowledge my own expertise and commitment to excellence whilst no longer beating myself up over minor, relatively inconsequential errors. Perhaps in time I will again find my energy and passion for my chosen profession. And perhaps I wont.

 

– name withheld by request

 


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