The Compassionate, Assertive Voice Versus the Language of Battle and Despair ~ by Karen Richards

After a busy week in which I had had meetings with a number of NHS health professionals, from various disciplines, about issues with my husband’s ongoing healthcare, I sent the following text, to my grown up children: Battle number 3 of the week fought and won. Dad is having the cataract, from his right eye, removed.

I felt a sense of smug achievement as I wrote those words. It is true that, through my persistence in advocating for my husband who finds it difficult to advocate on his own behalf, I had managed to get decisions, previously made, reversed and in my view, a better course of action planned in pursuit of his health and wellbeing but the language of battle that I had used in my text and its implied sense victory was ‘off’. My intuitive self was immediately uncomfortable with my choice of words and my body felt out of sorts with itself. I was claiming a victory, which was not mine to claim and placing the people whose time and skills had been freely given, in the role of conquered enemy, which was neither just, fair or true.

To give context to those who do not know the circumstances surrounding my so called ‘battles’, my husband, David, is chronically ill and quite disabled. The course of our lives, as they are lived now, began in 2007, when his immune system collapsed as a result of taking anti-TNF drugs to treat his rampant rheumatoid arthritis. An infection, which started in the base of his joint damaged right foot, turned to sepsis. At this time, in our local NHS history, GPs could refer patients directly, from the community to a specialist ward at the hospital, without the need to be triaged through A and E. This had its benefits in that there was no waiting for hours on uncomfortable chairs, trolleys or the floor in some instances, before being admitted. The downside was an over reliance on clear communication between the GP and the receiving hospital staff about the symptoms and possible causes.

In David’s case, a miscommunication between the GP and the hospital about a suspected infection meant that the severity of his condition was not picked up, for several days. It wasn’t until an abscess formed on his leg, as the infection searched for a route out of his body and something akin to a scene from Alien burst out of him, that appropriate blood tests and microbiology were ordered. By this time, sepsis had well and truly got a grip of his body.

However, neither the diagnosis or the implications of this were explained to us. My husband just got more and more sick and it was only when I overheard two doctors talking to each other, one on either side of my husband’s bed, that I suddenly realised the seriousness of the situation. By this time, he was so unwell that he was rarely conscious and when he was awake, he was confused and disorientated. As his wife, I felt voiceless and unseen. Professionals were talking to each other as if I wasn’t there. Things were being ‘done’ to my husband, the consent for which he was physically incapable of giving. My enquiry at the nurses station about what was going on was met with a noncommittal response and I was told that I would have to speak to a doctor as they weren’t at liberty to talk to me without David’s permission.

So, I went home, confused and upset. I wanted to understand and to advocate for him, to step in and partner the professionals, to be part of the decision making on his behalf but I was shut out. Perhaps, I didn’t use the right words or approach the right person at the right time but there were no signposts for the friends and relatives of someone who was so ill that they could not speak for themselves. I felt that I had two choices, to either accept that, at some point, someone would tell me what was going on but on their terms and in their own time or to fight the system with the only weapon that I had any skill in wielding- the written word. It is said that ‘the pen is mightier than the sword “ and, since the age of nine, when I helped my single-parent, dyslexic mum fight the social security system to get the appropriate benefit entitlements, I have sharpened that blade and taken it into battle to advocate for children, in my role as an education professional or claim my consumer rights when companies and services fell short of their customer obligations.

So, I wrote a letter to the consultant, whose name was written on a label, at the head of David’s bed but whom I had never seen. There was anger in my heart, as I wrote, using brevity as my blade- two short, pithy paragraphs, sharp and pointed – and copied to the charge nurse who ran the ward, the Patient Liaison Service (PALS) and the Chief Executive, whose name I had noted on a board, in the foyer of the hospital. I put David’s name as the sender but signed it on his behalf, clearly sounding the message that whilst he was incapacitated, it was me they should be dealing with.

In less that twenty four hours the mood changed. The staff eyed me with an uncomfortable reserve when I entered the ward and I was summoned to a meeting with the consultant, who took me into a private office and explained the situation. It was a sunny, Friday afternoon, in July. The room was small and stifling. He began the conversation by acknowledging my letter and telling me that relatives were the bane of the medical staff’s life. I let that go, though emboldened by the letter’s effectiveness, I had several rebuffs circulating in my brain. I needed to understand my husband’s condition, so I let him continue. He didn’t pull any punches. Without ceremony, he informed me that my husband was gravely ill and was expected to be dead by Monday. I could have gone on and asked why, as David’s next of kin, I had had to fight to get that information but his blow was brutal. I needed to retreat and regroup. So, I thanked him for his time and his honesty and went home to phone my children and David’s siblings.

David did not die that weekend, or any other day in the weeks that eventually turned into four months in hospital. Skilled people looked after him. They treated his renal failure, they infused him with strong antibiotics, they drained litres of pus from affected joints and eventually amputated his infected, lower right leg when swabs came back positive for methicillin resistant staphylococcus aureus (MRSA). In short, they saved his life. I was grateful and humbled.

So, was my battle language justified? It got me what I wanted – clear communication. But I lost something, too. I had framed the situation as a war within my own mind. I had created a ‘me and other’ scenario, which felt justified in the moment when adrenalin was coursing through my veins and I was determined to gain some insight into the situation but it has also left its scars. Both then and to this day, some (but not all) of the members of staff who looked after him, and still do, eighteen years later, approach me with caution. I am the trouble-maker wife. I also lost, momentarily, my inner peace, my core centre. I was trying to advocate for something perfectly reasonable but the associated emotions were anger, fear, panic and a feeling of isolation, which, had I been wise enough, I would have dealt with first. These emotions give birth to the flight, fight or freeze responses in the amygdala of the brain. Approaching difficulties when we are in this state of mind can lead to consequences that can have a long fuse and are difficult to recover from.

By and large, over the eighteen years since ‘the big event’, I have learned how to check in with myself before acting. Sometimes, what needs to be done is obvious and happens, naturally. At others, it is a question of letting things percolate, on the back burner of the mind until a clear course of action evolves. And, inevitably, there can be times when neither of these two things apply but there is still a need to act, not quite knowing for certain what is right. At these times, to view the other person or situation, with compassion, not seeing them or it as ‘other’ helps us be mindfully assertive, rather than battle-like, leading to more respectful relationships with people and, just as importantly, with ourselves. Looking back over my life, I can see why my fight and flight behaviours are so ingrained and this is even more reason to take time to pause first and act later.

My text message to my children slipped back into old language patterns. I had spoken of battle, yet no battle had taken place. The three discussions with healthcare professionals that I had had that week all resulted in positive outcomes, which had reversed some previously made decisions about care that I had judged to be unacceptable. I had not, however, waged war with them.

On the contrary, I had expressed my concerns, provided them with additional, relevant information and discussed the options and the possible consequences of each. In the first instance, a phone call to a physiotherapist, who had known us both since those early days of David’s recovery and convalescence in 2007, had triggered a multidisciplinary meeting to discuss a plan of action for treating his right knee, which has been swollen since February, rendering David unable to wear his prosthesis and therefore unable to walk. The meeting was fruitful and gave us both hope.

The next day, I had stood firm when I was told that David did not qualify for a continuous blood sugar monitor under NICE guidelines because he was a type 2, rather than a type 1 diabetic. I had pointed out that his arthritic hands were not capable of taking his own blood sugar, even if he wanted to. I had said an assertive ‘no’ when it was suggested that I should take his bloods, on the grounds that I would not always be around to do so and for them not to be taken, regularly could be dangerous. The professional saw the logic in this and conceded but it was done agreeably.

And a factual and reasoned letter from me, to an ophthalmic consultant, written in the spirit of enquiry, not insistence, had triggered a rethink into whether it was possible to remove a deep cataract from David’s right eye, helping him to see people as more than grey shapes and share in the watching of a TV show. It was a week in which there was a meeting of minds that were receptive to varying viewpoints.

Did these outcomes make me feel like I had won a battle – a little – but on reflection, the ‘victory’ belonged not to me but to the willingness of all involved, including David himself, to enter into a dialogue of equals, letting go the habit energy that fuels discord and the need to defend his corner. My text message to my children was born of that habit energy and was not well worded. My body and mind knew it, as soon as it was sent. Happily, my children know me well and will set me straight, again.