The nature of my job means that I stop to think about death and dying on a fairly regular basis. It’s all around me: the patients in ICU are the sickest in the hospital, and we admit them there to give them a chance… they are all people who would almost certainly die without that admission, but who may survive if the support we offer in ICU is enough to get them through that time when their body isn’t working properly.
It’s also something that we don’t really talk about in our busy, future-focused society.
But that means that when it comes to the time when we need to discuss it, we’re not necessarily certain of what our loved ones would want, and we look at the situation through glasses tinted by our own emotions, our desire to cling to any possible remnant of the person we love, to not let them go because how can life possibly go on without them?
Over and over again, I watch families wrestle with the idea that the person they love is going away- it’s tortuous, to battle against something so inevitable, but that it feels like we should be able to halt with all the equipment and medication at our disposal. And worse, something that we can often stave off with all that stuff, creating the illusion that we are immortal, that we can keep hold of life for as long as we want to.
It can’t be done. Everybody dies, and very few people get to choose their moment. If they did, I know my grandmother would have waited the extra 10 minutes so that she could say goodbye to her grandchildren. That said, long before I even knew my nanna had cancer, she played me a song, Bette Middler’s version of The Rose, and told me she wanted it at her funeral. It’s the closest we ever came to discussing death, even after we knew her diagnosis. When I tentatively offered this information to my family, who had already started choosing music for the funeral based on what they thought she’d like, nobody disagreed with me, because I’d had that conversation with her; I knew what she wanted.
But what about those awful times when we’re asked questions that we don’t know the answer to? How do we respond to the question, “what would the person you love want?” If we haven’t talked about it, how on earth do we begin to answer those questions?
Description of the experience
I nursed a patient with a catastrophic brain injury as a result of a spontaneous subarachnoid haemorrhage. Neurosurgeons and Intensivists agreed that there was nothing more that we could do to improve her outcome (“no chance of meaningful recovery”) based on the deterioration evident in her repeat CT scan. Attempting to explain this to her family, an obviously close-knit and loving group, was very difficult as they were not willing to accept the expert opinion presented to them.
*I remember all the names of the patient, and her husband, daughters, father, sister, niece and brother-in-law. I will refer to them as “the patient” and “the family” throughout this reflection for reasons of confidentiality.
As a member of the team caring for this patient following the repeat CT scan which showed the extent of her brain injury, my primary focus was on attempting to afford the patient some dignity in death. We had not withdrawn treatment, though the decision had been made that further escalation of treatment (including resuscitation) would be futile and ultimately unkind to both the patient and her family by prolonging the inevitable. From a nursing perspective, however, the priority had begun to shift from keeping her alive to providing her with a dignified death.
It became clear, however, that the patient’s family were not “on the same page” as the team of people responsible for her care- they felt that the best option was to provide her with a tracheostomy and allow her to live for as long as possible.
Denial is a critical part of the human coping mechanism. Without it, we would all wake up terrified every morning about all the ways we could die. Instead, our minds block out our existential fears by focusing on stresses we can handle…
(Dan Brown, Inferno)
I want to make it absolutely clear: we don’t just quit. This isn’t the killing off of people we can’t be bothered with that the media likes to report on. But sometimes we reach a point where we know, absolutely know, that a person can’t recover, however much medication, organ support and one to one nursing we provide them with. They can’t recover because whatever has brought them to this point has made it impossible, despite our best efforts. A quick google tells me that ICU mortality rates in the UK are 30-50% (information from 1000 Lives Plus), horrifyingly high until you realise that without ICU admission the rate would be an awful lot closer to 100%. We give people a chance, but it isn’t always enough for them.
That’s the case here- this patient’s brain had been catastrophically damaged by the bleed in her head. But, because her family loved her, they couldn’t accept that her life was over. It’s understandable… but what they wanted us to do was keep her body alive in the hope that her brain would somehow repair itself… and what we know about nerve cells is that they don’t repair- that’s why so many neurological conditions are progressive, and why paralysis following a spinal injury or stroke is permanent. I’m not a scientist. Nor am I a doctor, but I do trust the experienced doctors that I work with to know when a brain injury is not survivable.
Explaining that, though, is often difficult. How do you explain to someone that their mother, wife, daughter, sister, aunt is never coming back, when she’s right there, in a bed and just looks like she’s fast asleep? There’s no good way to explain to someone that where that person was, there’s now going to be a hole in their lives- that when she complained of a headache while out for a meal, that was the moment they started to lose her. Who would want to face that, when they can see her there in front of them looking like any minute she could open her eyes and start talking to them?
It’s not my job to make decisions about end-of-life care. I trust our doctors to make those decisions with the best interests of the patient in mind, and I can’t think of a single time I’ve been uncomfortable with that decision- often, in fact, I’ve felt like we’ve hung on for longer than we should, come too close to crossing the line between kindness and cruelty by ventilating someone, squeezing their blood vessels with drugs, taking their blood out of their body, filtering it and returning it, all of this is fairly brutal. But our job is to give the sickest people in the hospital a chance of living, and to that end, it’s better to hang on until you’re certain you can do no more for them.
In situations like this, I see my role as something of a bridge between the doctors and the patient and their family. Often, when they sit down with doctors, people view the person talking to them as someone super-intelligent and fairly removed from the situation, and someone who is telling them things they can’t possibly understand… but are afraid to ask. They’re less afraid of nurses, and, if they’re not completely mistrustful of everything we say, we can explain in laymans terms what it is the doctor was saying. So my first question is always, “did you understand everything the doctor said?” and very often the answer is no. That’s not because the docs aren’t good at explaining, rather it’s because at times of intense emotion, it’s not easy to take in information and it often needs to be repeated, and I try to do this in the simplest, most blunt terms because I think that most people value honesty, even if it’s something they don’t want to hear.
Could I have dealt with the situation better?
I came away from this situation feeling like I hadn’t achieved anything at all. When they left the hospital to go home, this family still absolutely believed that the patient was going to make, not only a recovery, but a complete recovery.
However, on reflection I do think something was achieved, even if it wasn’t the thing I wanted, which was to help them understand that this lady’s brain was damaged beyond the point from which she could recover any function at all. They just did not agree with this assessment and I was not able to help them consider the alternative. They did go home feeling listened to, valued and, most importantly, that I had the best interests of the whole family at heart. It isn’t a small thing for a family to realise that, and hopefully I was part of the process of them accepting the reality and being able to begin to let the patient go.
If you love someone, let them go.
I could have said nothing, and just allowed them to get on with their visit. That was my other option and it probably would have been easier and certainly less frustrating. But I know that if I’d done that, this family would not have been left with the same feeling that they had been listened to and were cared for, instead they’d have thought that I didn’t give two hoots for them or the patient, and I think that would be a far worse outcome than failing to convince them of the truth.
The art of nursing is in the small things and if a family went home feeling valued, then I’ve done my job.
This experience reminded me of the time I spent in ethics and law classes during my nurse training. On the first day, the tutor wrote in capital letters on the top of the whiteboard the maxim,
FIRST, DO NO HARM
It remained written there for the duration of that course, and it was drummed into us as the litmus test to answer the question, “am I doing the right thing?” As we discussed the principles of ethics, and various cases where questionable decisions had been made, we learned to consider the principles of ethics in every decision we made:
- Non-maleficence (do no harm)
- Beneficence (do good)
- Autonomy (act as the person would want you to act)
As I’ve practiced though, I’ve stopped thinking about it in those terms, and instead followed my own internal moral compass. It doesn’t change anything, but it’s good to analyse the situation and ask those questions about what you’re doing. They remind you that you’re dealing with real people and real lives.
In my life outside, I’ve learned that it’s important to tell your family what you want in the event of serious injury or incapacitation, and it’s important to find out what they want- so that if you’re ever asked questions about their wishes you can confidently answer, safe in the knowledge that your empathy is not skewed by your own desperate desire to keep hold of them.