A Hospice Nurse’s Perspective

I had a light bulb moment last year when I realised the appalling Government strategy of lockdown is all about the NHS. Somehow the public got conned into the ‘Save our NHS’ slogan, clapping on the street. One of the few journalists courageous enough to point out that surely the NHS was meant to save us was Julia Hartley-Brewer on talkRADIO – another life saver for my mental health alongside Lockdown Sceptics.

There appears to be a massive cover up going on for the dismal failings of successive governments to properly resource and structure the NHS in which I have worked as a nurse and midwife for four decades.

It was shocking to hear a spokesman for the NHS say in a radio interview last December that there are 11,000 fewer beds this Winter. After months to prepare and after years when the NHS has been on its knees every Winter, was this the time to slash capacity and provision under the auspices of COVID-19 infection control measures? Clearly not.

The Nightingale Hospitals were built in a great hurry and at considerable cost last year with Matt Hancock heralding them. Yet when they became really necessary to provide extra capacity to maintain all routine healthcare in the midst of a pandemic, the Government woke up to the fact that there were not the staff available to run them.

One of the failings of successive British governments has been to not recruit sufficient nurses. One of the root causes of this is that nowadays a person wishing to train as a nurse must fund themselves through a degree course with less hands-on nursing. This has led to a chronic shortfall in suitably qualified nurses.

I started training as a nurse in the 1970s when nursing was recognised as an essential part of society’s infrastructure. We were paid from the start of our training and provided with accommodation; these accommodation blocks have long since ben sold off. When I later went on to train as a midwife, I was also paid throughout my 18-month degree course which made it possible for me to progress in my career and for the NHS to secure 15 years midwifery from me, before returning to general nursing.

We have a country overwhelmed by frail elderly in very decrepit states with multiple comorbidities. I have witnessed in my last job at an NHS Community Hospital that the old and frail are no longer allowed to die naturally and are endlessly treated in acute care, extending their miserable lives with doctors claiming they are doing the right thing. I would beg to differ, especially as we have such a breakdown in adult social care that these people can no longer be looked after with much dignity. They are often isolated and lonely.

I have looked after patients in their 80s and 90s routinely suffering from progressive and chronic medical conditions, chronic obstructive pulmonary disease, diabetes, heart failure, renal failure and dementia, to name a few. Adult social care is expected to pick up the cost of caring for these people as they decline or they themselves are expected to fund it above a certain level of savings/income. Care of the elderly is now a ‘revolving door’ scenario. The same patients are going constantly in and out of the system. Acute care has a ruthless policy of treating all ‘reversible’ conditions and often a callous discharge policy once this has been achieved. Adult social care is chronically and systemically under-funded. This leads to the constant playing off of one pot of money against another. The patient in the middle of this is often begging to be looked after as they are lonely and fearful, aware of their own decline and sometimes asking to be allowed to die in peace with their dignity in tact. Amongst those that are still cogent, I have been told over and over by them that what they dread are the constant interventions, the shunting back and forth from home to hospital in which they feel they have little choice. Let me say now, I am not a political activist or a campaigner for euthanasia. No doubt what you are about to read may trigger such suspicions, but I urge you to consider how you may want to be treated when your time comes.

I nursed a lovely 95-year-old woman who had intentionally taken an overdose. She was furious to have woken up in hospital after a district nurse found her and summoned an ambulance. Her brain was sharp and clear and she told me she did not want to carry on living. She was lonely, she had no family and had seen most of her friends die. I asked her why she had agreed to a pacemaker being inserted a couple of years previously. She told me the procedure was more or less just done to her without obtaining proper informed consent. My views may sound controversial. I am by no means suggesting we just let the elderly die when they reach a certain age or level of infirmity. However, I do believe we should listen to the elderly and act upon their wishes. Yes, some are fighting for their lives to the very end but others are ready to let go. Who are we to force them to stay alive against their will, disturbing them with invasive treatments which they may not want? Undoubtedly, professionals are terrified of litigation, disciplinary procedures or relatives accusing them of negligence. I have looked after a man in his 90s having dialysis three times a week, as well as a woman in her eighties having chemotherapy for a cancer that had spread to her brain. No medic had had the courage to have an honest conversation about what the alternative to these treatments might look like. This is discussed in Atul Gawande’s book Being Mortal: Medicine and What Matters in the End.

Much has been written about the ‘Do Not Attempt Cardio Pulmonary Resuscitation’ (DNA- CPR) form which many of these patients are asked to sign but there is very little discussion about nuances in the escalation of care in the event of deterioration and what treatment would be acceptable. It is often too late to have these discussions once the person is very ill and so they are ignored. Patients I looked after often had little idea of what they were consenting to. Relatives may or may not have Power of Attorney for Health and Welfare and are often miles away. Many of these patients were in the advanced stages of dementia with poor mobility and no capacity to look after themselves. They were often on an intense drug regime that included, for example, blood thinners, statins, beta blockers and insulin. We were required to treat them as if they were on the mend and prepare them to go home. A spike or drop in their blood pressure, abnormal respiratory rate or fever are amongst the situations that may trigger, for example, a ‘red flag sepsis’ alert and prompt us to call 999 for a blue light ambulance back to the acute hospital for various and sometimes aggressive treatments that they either did not want, did not understand the purpose of and from which they could barely recover. These transfers were often referred to “as covering our backs”. We did not have a resident doctor or prescribing nurse.

We are bombarded daily with carefully curated news reports that seem designed to induce fear and sentimentality often linked to the deaths of the frail and the elderly that exhort us to comply with the latest Government messages, one of which, trying to appeal to younger people, is “Don’t kill Granny”. Journalists delivering these reports appear to be looking over their shoulders to avoid censure by Ofcom. why else would they never challenge the received orthodoxies of the Government as they would if it were any other type of policy? Meanwhile, was anyone asking Granny what she wanted? These are taboo matters that cannot easily be aired in public as we live in a society of people who refuse to accept their own mortality until they might find themselves at this point and then wish that those around them would demonstrate more courage and compassion and wisdom in how they care for them. A recent episode of Hospital on BBC 2 featured Barnet General Hospital, which has been especially overwhelmed by COVID-19 as Barnet has the oldest demographic in London. It was difficult viewing but with a discerning eye I was fascinated to watch a lovely lady in her 80s, who had been found collapsed on the floor at home and had been diagnosed with a cardiac problem, not COVID-19. She said directly to camera she thought it was her time, that she was dying, that she believed in God and was essentially at peace with this. The young doctor treating this patient then speaks to camera after noticing how peaceful she is and interprets what she has said for the viewer: “She is in a delirium.” It seemed that the doctor could not accept what the patient had said and dismissed her ‘peace of mind’ as being ‘out of her mind’! This patient then spent the next few weeks in an acute bed being pushed to rehabilitate to a point when they realised that she would not be able to go home and live independently and so sent her off to a nursing home where no doubt currently she has become a prisoner of the state like so many others without being permitted to see loved ones. They call this a success story.

When I worked in the Community Hospital, we too were tasked with encouraging patients to get up from their beds, wash, dress and fend for themselves. Sometimes it felt more like institutionalised bullying. Most of the time we knew that rehabilitation was fiction and unnecessarily cruel. It was clear to us that these patients would need progressively more care as time went on. But ours was not to reason why. Instead, our job was to prepare them for their discharge. This sounds wonderful in theory but in fact we invariably saw them back within a few days or weeks after a fall or episode when they had been found disorientated, frozen, soiled, not coping and humiliated.

All this was before the COVID-19 pandemic. There were times back then when it felt like a wartime field hospital. We were routinely short-staffed and struggled to keep our frail elderly patients safe. I worked with two nurses newly arrived from India who were aghast at what they were witnessing in our “famous NHS”. They told me that the hospital from where they had come in India was better than this.

I think we live in a society that just does not accept death. However, I have met many wonderful older people who do accept their demise such as the woman featured in the programme I have just mentioned. Wisdom seems to be in short supply amongst the medical profession these days. Maybe our blame culture is part of the problem. Maybe this was the driver for the Government’s lockdown policy, although it was not initially Government strategy. I was working in the community hospital last year at the start of the pandemic when people were being hurriedly dispatched from the acute hospital in anticipation of soaring admissions, which in our area never materialised. One of these discharged patients was a charming and astute woman aged 90. She was not considered fit enough to be sent directly home so had come to us for further rehabilitation as her mobility was affected by a recent acute hip problem for which she had received treatment. We noticed she had a persistent cough and she was very clear she had acquired it in hospital. I and my nurse colleagues flagged up our concerns but we were reassured that despite the fact she had not been tested for COVID-19 she was not deemed to be at risk. At that time, we were not barrier nursing patients and she was not in a single room. Sadly, she went on to become sicker and eventually tested positive for COVID-19 with a difficult death and traumatised nurses who had struggled to look after her. Our hospital was then in the midst of a COVID-19 outbreak. We were bombarded with daily messages from Public Health England and changing infection control measures. It was chaotic and I can confirm there were indeed shortages of PPE for nursing staff last March and April. Patients were succumbing to COVID-19 and then most of the staff, myself included, went on to catch it.

It used to be considered gold standard in nursing home care that residents would be looked after there and kept comfortable with the appropriate Just in Case (JIC) medication for use when they become seriously unwell. The staff knew then they would not need to be escalated to hospital where they might spend hours on a trolley only to die in A&E. My own parents, both of whom suffered from dementia, remained in their nursing home when their health deteriorated and died peacefully from chest infections. Pneumonia used to be referred to as “the old man’s friend”, an outdated expression from an era when irony was permitted. It was never truly a friend when it took the old and the frail but often a welcome release as it was indeed for my father and mother. There was another term used in the past when an elderly person took to their bed and was described as “turning their face to the wall”. This was recognised as being a natural progression to death. People were allowed to die at home and people understood that this was normal. There was in the past extended family to look after them in this situation and this is still the case in many cultures. The trauma for the nurses looking after the woman above dying of COVID-19 was the lack of preparedness and lack of appropriate prescribing of medication to ease her dying, let alone lack of appropriate PPE.

Lack of preparedness has been a feature of this whole pandemic. I have witnessed over the years NHS ‘firefighting’ which has come to be accepted operationally and has now floundered with the scene set for the perfect storm.

I am currently nursing in a hospice that provides gold standard end-of-life care and symptom control for those with life limiting illnesses. The NHS seems unable to provide a comparable level of care, so the hospice is funded by a charity. Currently, this charity’s fundraising efforts have been hugely curtailed because of lockdown. In recent weeks I have found it very hard to nurse three people in their 30s dying of bowel cancer while the media is obsessed with the deaths of much older patients from COVID-19.

The Government’s approach to the COVID-19 pandemic has caused many not to bother the NHS and others to be told that they would have to wait for treatment. We have had recent admissions to the hospice of patients ranging in age from 30 to 60 who are convinced that the stopping of their treatments during the pandemic has resulted in their illnesses becoming terminal. The palliative care doctor Kathryn Mannix is the author of a book called With the End in Mind – How to Live and Die Well. Sadly, the patients I have nursed during the past few months have been unable to live well with their own end in mind. Lockdown policy and other measures used in attempting to control COVID-19 have stripped people of their autonomy to weigh up the risks and benefits of being surrounded by family and friends or do many of the life-enhancing things that might have been meaningful to them at the end of their lives. We often heard the phrase “What is one Christmas?” from people supporting the suspension of festivities last December. For thousands of cancer sufferers across the UK, it was their last Christmas.

It is hard to explain how counter intuitive it is to nurse the dying in a mask, which I fear will become a standard part of a nurse’s uniform. Masks become a barrier to communication and make it difficult to express loving care and reassurance at such a vulnerable time for our patients.

In this country there is a tsunami of patients on the horizon, those with undetected cancers from lack of screening, as well as those developing acute conditions both physical and mental after their chronic conditions have not been followed up during this pandemic or indeed which have arisen as a direct result of various Government policies. These patients are going to need care on top of all these elderly declining patients trapped in a system that insists on prolonging life as long as possible regardless of the quality of that life. Care of the elderly needs a major rethink and the division of money between local authority, adult social care and health care is a travesty which many only face up to when they are subjected to it. We desperately need a joined-up service.

If there is ever to be a reset – not a Great Reset, but a little reset – it should be one that enables us to ‘take back control’ of our own mortality and accept the circle of life and a natural progression towards death. As far as I know, there is a 100% risk of death in being alive. Of course, we don’t want this too soon but healthcare should be respected as a finite resource and medics should not fix everything just because they can. Rationing of care causes horrified responses and yet it is exactly what we are currently doing. In this crisis we are trading one life for another – often younger ones to save older ones. As a Society we need to consider our options and we should all be encouraged to prepare Advanced Decision Documents. These can be done on line for free with the excellent organisation ‘Compassion in Dying’. This will help mitigate the merry-go-round in older age that I’ve described and is the only legal framework in which to challenge and direct the NHS when we have lost capacity. I have my paperwork firmly in place.

Medicine has lost its way in a culture of fear and blame and the trauma for NHS staff is not just from witnessing some of the scenes the media are desperate for the public to view but from knowing we are all affected by policies which break some of the basic rules of our profession. We are supposed to care for patients and to treat them with respect, dignity and do them no harm. At the coalface of the NHS, we often haven’t been able to stick to those precepts.

I do not believe we will get our freedoms back until we rebuild the health service or ration it appropriately and wake up to the reality of living with our end in mind and working out what is truly important to us.

The author is a former NHS nurse who now works in a hospice.