The transformational power of hope: a bedside story
There are certain experiences we have in life that never leave us; experiences that teach us and that we grow or change from. As a doctor, I have the privilege and the burden of seeing people at their most vulnerable; these are the times when perspectives and priorities change as the prospect of life or death drowns out all of the noise we make inbetween. Here, the things that are truly important come to the fore,
and here, the window I am given allows me to see what holds importance in the lives of my patients and their families. The stories I observe don’t alway have a fairytale ending - in fact, it is often the ones that don’t end happily that stay with me. The ‘what if’, and the ‘why’ stories; these are the opportunities for reflection, on what it means to be alive, to love, and to carry on when the chips are down. These stories don’t always offer up immediate answers - instead, they highlight the great complexity of our humanity. Let me share with you the story of Chris*, one of my first patients, and one who taught me a very important lesson.
I met Chris the day before he was due to go for his operation. His foot had developed gangrene and the only option was to amputate. He was a cheerful, burly guy with a beard, and a belly laugh that you couldn’t help but join in with. I remember asking him how he felt about the impending surgery.
‘Oh, you know, it is what it is’, he said, with a shrug and a guffaw - ‘better off than on’. That belly laugh followed, although the humour never reached his eyes.
His operation went well, and we accelerated him onto his rehab plan much more quickly than usual. Despite diabetes being the underlying cause of his condition, the stock of energy drinks and packets of sweets never dwindled on his bedside locker. We had a nightmare managing his blood sugars, and I lost count of the bleeps I received from the nursing team asking me to come and review another sky high reading. It didn’t matter how many chats I had with him about his sugar intake, or how much we juggled with his insulin regime - Chris simply didn’t care. When the physios took over and started putting Chris through his paces on the long road to recovery, it became slowly evident that he didn’t care much for that either.
As the days became weeks after the operation, we became increasingly concerned as Chris started to withdraw from us all. The laughs became less frequent and the physios often left his room, dejected, having been sent away again by him. We clutched at straws to try to re-engage with him, to reconnect and to try to understand why he was pulling away from us. The psychologist couldn’t make headway, and even a stern word from the consultant had no effect. We couldn't fathom how he wasn't pulling himself through this; his room was never empty - he had a huge family, each a personality in their own right, and they visited frequently. I came to know them by name, often bumping into them in the hospital cafeteria, or standing outside smoking, in the course of my days and nights at work. They were rambunctious, larger than life, and deeply loving. How could you not recover, or even want to, with all of that positivity and love surrounding you? His wife and children put on a brave face while they were with him, cracking jokes and recounting the cherished family stories that had drawn them all together, but I saw the tears they shed in the corridors outside the ward, and the fear stretching taut across their faces. They asked me why he was like this and I couldn’t answer. None of us could.
Weeks went by, and he ate less and less, becoming angry with us when we tried to cajole him into sitting up in bed, or to encourage him to eat some of the food on his tray. He began to shrink behind his beard, becoming gaunt and grey. His wound stopped healing and we were forced to put a catheter in as he refused to get out of bed or to ask for a pee pot. He developed a thick, mucus cough which rattled around the corners of his room and out into the ward. Pneumonia followed, and then his heart became overloaded. Specialist doctors from other wards were drafted in to look at his chest and his heart, and then his kidneys. His eyes became vacant and we began to forget what his voice had sounded like. His daughter, Emily, in a wheelchair, used to roll it up to his bedside and sit for hours, just holding his hand, and he used to squeeze back - our only indication that he was still with us in some way. The inevitability of the situation hung like a heavy cloud over us all. We were watching this man - this barrel-chested behemoth who had captured us with his easy charm - literally will himself to death. The conversations about resuscitation began and the frequency of blood tests increased as we desperately tried to alter his course and added medications to fix the next new thing that was going wrong. He had a heart attack but pulled through, barely.
On a lull during a nightshift covering a different team, I popped down to see him. Even at 2am, there were six family members clustered around his bed. They looked up, expectantly, as I walked in.
‘Any news, doctor?’
Of course there wasn’t. I had nothing to offer. I uttered a few, useless words. Their pale, drawn faces looked back at me. And then, Emily reached her hand up to mine and pulled it to her.
‘We just wanted to say thank you. I’m sure Dad would too.’
The lump in my throat was instantaneous. The intensity of that moment has never left me. How utterly undeserved that thank you was, how helpless I felt and how little difference I had made. I hadn’t saved Chris, I was watching him die. Worse, I was watching his family watching him die, and none of the warmth and love that they shared, that filled this space, could change that. I fumbled with a few more empty words, patting Emily’s hand and stepping away to stand closer to the side of the bed. I looked at Chris, unrecognisable now, the dry rasp of the air travelling up and down his windpipe the only sounds he made as he raggedly drew breath. I patted his hand too, as if that would help, and then turned to leave the room. I felt then that that would be the last time I saw him. I asked the nurses outside to call me if anything happened overnight. I just wanted to be there, to finish this journey with him and his family. They didn’t bleep.
When I returned to the ward a few days after, his room was occupied by someone else, and the ward was quieter with his large family gone to grieve. I had new patients on my list, and Chris had been deleted from it with a simple press of the backspace key. List or not though, Chris never left me. His story made no sense. To me, the love of family was more than enough reason to want to live. But, even without him wanting to live, surely there was enough care there for him to just....get better? Years later, searching for the answer, wondering how to make this make sense, I finally realised:
It wasn't about love, or care. It was about hope.
Chris died because he lost hope. He lost the ability to see a happy future, a future that was worth living for. Even despite the bounty of love and hope that he was surrounded by, he didn't have it for himself. And this was the second part of the lesson:
Hope isn't transferable.
While we hold hope for our loved ones, that hope cannot be taken and used to shore up our intended recipient's. The will to live - our hope in ourselves and our future, and our love for the life we live - comes from within. Most of us are hopeful as a default - so how do we lose it? When life throws us into difficult situations, there is a danger that if we fail, fall short, or are badly hurt, that we lose faith in ourselves. We despair at our apparent inability to change that situation and if left, we believe that we are helpless. I'll never forget the way the laughter never reached Chris' eyes; I didn't realise it at the time, but he was a man who felt helpless and who had lost hope even before he became my patient. I'll always wonder whether we could have done something differently, and whether we could have helped him to build his own hope in some way.
For Chris, that will always be a 'what if', and that story will always be a sad one, but for those who feel hopeless, it is possible to build hope within ourselves if we've lost it. Hope is fed by our sense of worth; experiencing success, experiencing the joy of creating happiness in others, being told that we are valued, having a path to follow - these all add to our self-measurement of worthiness. To be hopeful is to have a sense that there is a future for us, and that we have a place in the world that is important in its own way. How we find our hope is unimportant, but as Chris taught me, what is important is that we must do whatever we can to hold on to it and to rebuild it if it becomes lost. Ultimately, hope's great power lies in its ability to transform us from helplessness to happiness, and on this journey, it's as vital to life as the air that we breathe.
*Name changed to protect patient confidentiality