Phoebe Coghlan is an ICU nurse and tells us about her experiences and reflections about supporting families of critically ill patients:
I’ve been a nurse on the Intensive Care Unit for two years, and one of the most challenging parts of my job is ensuring that families receive the best possible support. There are so many demands on my time during a shift, and juggling that time between patient care, and supporting a family who I can see are distressed and hurting, becomes a delicate balancing act. This article is a reflective piece about how I and my unit try our best to accommodate families and children who come to visit somebody they care about very much.
When families visit loved ones in induced comas on our ICU, they invariably have two burning questions. ‘When will they wake up?’ and ‘Can they hear me?’ As the bedside nurse, I have no straightforward answers. I tell them we’ll assess the situation day by day. It’s a lot to take in, and some family members will rephrase their first question, hoping to receive the answer they desire; an answer I cannot deliver. As to whether patients can hear what’s going on around them, it’s difficult to tell. Some patients wake up and remember nothing, while others recall snippets of conversation or traces of a familiar voice. So I always encourage visitors to talk and to touch, whether that’s holding a hand or kissing a cheek. It can help them feel closer to the person they love and can conquer feelings of physical and emotional separation they may be experiencing within a shocking and unfamiliar circumstance, and an alien hospital environment.
As nurses, we are taught to care for our patients and their families holistically and, of course, that includes providing emotional support. I am lucky to be part of a lovely nursing team – we are generally a kind and cheerful bunch – and we usually build up a strong rapport with families. We encourage sharing photos and stories and questions and conversations until we feel we know our sedated patient who is in a coma, even though we’ve never had a chance to properly meet them. This period of waiting for the unknown is an agonising and traumatising time for families, and we endeavour to make them feel safe and comfortable. We see them through the peaks and troughs, and when patients who have been discharged return with their families, it is always emotional. When an eighteen-year-old woman suffered a traumatic brain injury following a car crash, nobody knew whether she would recuperate, and it was the most wonderful thing when she walked back onto our unit a year later, fully recovered. And our entire nursing team was overjoyed when a woman with young children, who had suffered a string of cardiac arrests, popped by to thank us for our care after being discharged home. But for every happy ending, there is a sad one, and in these cases, we sit with, talk to, cry with, and hug the families we have come to know so well over a period of days or weeks or months. We all have patients and families we will never forget.
But equally, there are times when we don’t have the chance to build that strong relationship. Some weeks ago, I was caring for a man who had been admitted less than twenty four hours earlier, after suffering multiple cardiac arrests. He continued to deteriorate despite maximum support for his failing organs. He had an extensive past medical history and almost certainly wasn’t going to make it. The doctors spoke to the family and filled out a ‘do not resuscitate’ order at the beginning of my night shift. The plan was to continue treatment throughout the night, and most likely withdraw and palliate in the morning. The patient’s wife was in complete shock. I didn’t have much time to comfort her because I was running around titrating infusions, changing ventilator settings, taking bloods and recording observations. It was the nurse in charge who gave her an hour of her time, and phoned in the whole family to stay by the patient’s side, including his teenage child. When my patient had a near cardiac arrest again at 1am, and I had to pull the crash buzzer, the family were sleeping in the waiting room. We managed to re-stabilise the patient, and afterwards I wondered how the three of us (myself and two doctors) would have balanced looking after the patient and the family simultaneously. His family spent the rest of the night by his bedside. They were so anxious. His wife told me over and over how his life was in my hands, begging me to save him, telling me she had spent all night praying to God for a miracle. I gently repeated there was a significant chance he wouldn’t make it through till the morning. She responded by saying he was a fighter, positive he would pull through. I really wanted to try my best for him, I really wanted to return him to his family. They needed him. The teenage child sat on a chair in complete silence, and when I asked if he had any questions, he shook his head. I softly told him he could hold his dad’s hand. He said ‘ok’ but didn’t take it. The night shift was non-stop and I hadn’t the time to build up a rapport with this family, and they hadn’t the time to process everything. By the end of my shift, it was clear that he would be palliated during the day. The patient died two hours after my shift ended. It was my last night shift, my last of four back to back 12.5 hour shifts, and I was exhausted. I went home and fell into bed. I was shattered but my mind raced with guilt. I couldn’t sleep. I kept thinking about that teenage boy. I should have stayed an extra ten minutes, I should have tried harder to connect with him, to let him share what was on his mind. I often wonder how he’s coping with a deceased father, a heartbroken mother and GCSE exams to revise for. When somebody passes away, we give the family booklets, and these have links for support groups and bereavement services. It is not enough.
Like everywhere else in the NHS, our unit is extremely busy and sometimes we are back and forth, hopping from bed to bed, helping our colleagues on either side with admissions and discharges, washes and emergencies, running back to our own comparatively stable patient to silence syringes that are bleeping because a medication is finished, or machines that are alarming because a lead has slipped from our patient’s finger. We know our patient is fine, but families do not, and they sit there wide eyed and terrified, wondering what on earth is going on in this noisy, intimidating and chaotic place as I promise they needn’t worry and vow to be back in five minutes. I can only apologise for these moments. Of course, once all the patients on the bay are settled and safe, my own patient’s family have my unreserved time and attention.
I’ve been a child on the other side too. When I was nine, my three year old brother nearly died of appendicitis, and two weeks later my mum had a stroke causing left sided paralysis. That month, I was surrounded by so much love and support from family, friends and school, and though I knew things were bad, I was largely shielded from the immense gravity of it all. As a nine year old, I was completely unaware that my parents were worrying about the future – would our flat need adjustments? Would we need home help? Would we cope financially? There is not enough support for families going through medical emergencies, both financially and emotionally. I am shocked by close relatives who come to visit their loved ones using ‘unpaid leave’, because their employers lack the empathy and kindness to grant them compassionate leave. My family were very lucky. Both my brother and mum fully recovered. I now work in neuro intensive care and when I see children visiting parents who have suffered a bleed on the brain, or a stroke, it gives me goosebumps.
Recently I cared for a patient who had suffered a sudden heart attack in the community. He was receiving maximum support for his weak heart, and a CT scan showed he had a hypoxic brain injury; insufficient blood had been pumped to his brain during the cardiac arrest, causing widespread cell death. He would never recover. He would never wake up. I sat with the consultant as he broke the news to his wife; broke the news that her two year old and six year old no longer had a dad. That evening, I read my patient the ‘get well soon’ cards his children had written him, plastered with hearts and kisses and rainbows. We gave his wife a list of picture books, like ‘Badger’s Parting Gifts’, that help explain death in a gentle way. The next day, he passed away and donated his organs, saving others with the gift of new life. I hope those kids grow up knowing just how much of an absolute hero their dad was.
When it comes to children visiting patients in intensive care, we provide the ICUsteps booklet Visiting the Intensive Care Unit which we find works really well. A literature review of children and young people’s experiences of a parent’s Intensive Care admission highlighted four main themes – children feeling a strong sense of separation from their parents, the unfamiliarity of the ICU environment, the overwhelming impact of the patient’s illness, and feelings of being overlooked as a close relative (often because information was disseminated to the adults around the bedside, as opposed to the children). The ICUsteps book addresses these concerns, as it provides a gateway to conversation and understanding. The booklet includes a trip round the bed space which children can do with nurses and other family members, and in this way, unfamiliar equipment and tubes and sounds are explained, and a safe space is created for the child to ask any questions. This helps children engage with their loved one and the wider situation, and through active participation and conversation, we hope they feel included, valued and at ease to communicate any worries or thoughts. Even as a qualified nurse, I found my first day on Intensive Care a daunting and overwhelming experience, so I cannot begin to imagine how I would feel if my first trip to ICU was to visit a loved one. The environment has a dystopian, eerie feel to it, and it was this that prompted me to write a poem to try and explain it all, and to reassure children; at first sight, ICU seems scary, but the patients are asleep with plenty of pain killers to keep them pain free. And the daunting amount of machines and medicines? They are there to help and heal, not something to be feared.
I’m standing right here by your hospital bed,
I hold your pale hand, plant a kiss on your head,
I know your mind’s deep in an ocean of sleep,
Dancing on waves with your dreams soft and sweet.
Those tubes in your mouth, in your nose, on your chest,
The bleeping machines and the daily blood test -
Are we in space? Or a robot-run land?
I feel quite afraid and grasp tightly your hand.
The wires look scary but really they’re kind,
They help with your breathing for our peace of mind,
And care for your needs and your bones and your brain
And your heart, should it soar like a fast, high-speed train.
We love you so much and we cry but hold on
While you’re whistling away to the dream fairy’s song,
And if I knew magic I’d chant my best spell
And you’d wake up all happy, for you would be well.
I whisper a lullaby into your ear,
I know you’re asleep so perhaps you won’t hear.
The soft sun is setting - it winks and it gleams,
I whisper goodnight – you sleep tight now, sweet dreams.
In conclusion, it is a shock to see somebody you love lying in an Intensive Care hospital bed. As nurses, we do try and offer support as much as we can, and we do have aids, such as the ICUsteps book, that try to make the experience gentler and more understandable for children. But please do speak up if you are visiting somebody and you feel overwhelmed or you feel like you would like more support. And we will try our best, always.