Recently, my facial muscles had stopped playing by the rules. An infrequent but long-standing eye twitch had spread from one side of my face to the other, before eventually descending to include my mouth.
The little lever in my brain switched from “this is fine” to “see your GP”.
As a researcher in uncertainty, I recognised that I had reached my threshold of discomfort in not knowing. However, I wasn’t prepared for what happened next.
I had predicted leaving my GP’s office with recommendations to cut back on coffee and eat more bananas. Instead, she advised a brain scan and neurology referral to explore something that was “99 per cent likely stress, but 1 per cent possible brain tumour”.
My attempt to quell my own uncertainty had thoroughly backfired.
Uncertainty is a common phenomenon that arises when we grapple with new or ongoing health concerns. We experience it when we are unsure about our symptoms, what they mean for us, and how – or if – they will be resolved. Overall, patients tend to experience healthcare uncertainty in terms of worry and discomfort. Research has also indicated that when uncertainty is not managed effectively this can hinder patients’ capacity to understand their illness and make effective decisions. Additionally, the uncertainty that arises when waiting for medical care can increase patients’ risk of anxiety and depression, and reduce their quality of life.
With the HSE acknowledging that many Irish patients face “unacceptably long waiting lists”, this begs the question, how do we tackle healthcare uncertainty?
Deirdre Collins is no stranger to such uncertainties. When Collins, a Dublin-based mother of one, was diagnosed with Sjögren’s syndrome in 2018, this marked a milestone in her 20-year journey to find answers. Sjögren’s, a chronic autoimmune condition, is most often associated with symptoms of dry eye and dry mouth. However, for many patients, symptoms can be vaguer, with complications, such as joint pain and fatigue, that wax and wane.
“There has been, historically, this kind of perception that medicine is very black and white,” says Collins, “that you’re sick, you go in, you tell the doctor what’s wrong, they tell you what the answer is and you’re better and you go away. That doesn’t happen with something like Sjögren’s.”
Although Collins had experienced pain and fatigue since childhood, she wasn’t diagnosed until the age of 35, when her signs flared due to the combination of pregnancy and a severe case of flu. She recognises that the diagnosis has given her some clarity, but still navigates doubt on a daily basis. “Uncertainty is probably the predominant kind of feeling overall. I don’t know how I am going to feel when I wake up in the morning. What level of pain medication should I take? Should I try a new medication? Are the side effects worth it? Should I try this doctor? Should I exercise? Should I rest? It’s all questions and unpredictability.”
Healthcare uncertainty is particularly acute when modern medicine fails to provide answers. “When you go in and then the doctor doesn’t know what to do either. It feels like deflation, it just brings everything down and it can be very emotional. You go in psyched up and hopeful and then you come out and it’s like, oh well, there’s no answers there, now what do I do?”
Collins has found her own route to managing her uncertainty. In 2021, along with other Sjögren’s patients, she cofounded the patient advocacy group Sjögren’s Ireland. The group has evolved into a crucial space for patients to share knowledge and experiences. “When you don’t have answers from the medical community, having people to talk to about it becomes so much more important,” says Collins. “There is a wealth of experience and understanding that comes together and it’s comforting, like somebody holding your hand.”
Uncertainty is inherent to the practice of medicine, according to Paul Han, a senior scientist at the US National Cancer Institute and lead researcher in the field. “Patients deal with the scientific questions, things like, ‘What’s wrong with me?’ ‘What’s my diagnosis?’ ‘Is it just going to get better?’ ‘What’s the outlook?’ ‘How do we treat this?’ but they’re also occupied with practical uncertainties like, ‘Is my doctor any good?’ ‘Is this hospital any good?’ and then there are the personal uncertainties like ‘How will this affect my life?’ ‘What’s going to happen with my family?’”
Han has spent several decades exploring the uncertainties faced by both patients and healthcare professionals. His research highlights that individuals tend to experience uncertainty, ie, what they are unsure about and what impact this has, in unique, context-specific ways. However, it is possible to recognise common sources of uncertainty. For example, much of the uncertainty that arises in healthcare comes from probability (“What’s the likelihood of my signs being caused by a brain tumour?”); complexity (“How do we get a neurology referral when the waiting lists are now years in length?”); and ambiguity (“Is a brain scan over the top, or not?”).
Han’s research also highlights that one of the key problems with managing healthcare uncertainty is that healthcare professionals can feel discomfort when they encounter it, and can be reluctant to discuss it with patients. “It’s pretty clear from what we know from research and also clinical experience, that uncertainty is very neglected,” he says. “It’s so ubiquitous in medicine, and it’s, paradoxically, ignored by clinicians.”
A recent study of UK emergency medicine consultants reinforces these findings. Lead author Anne Collini, lecturer in medical education at King’s College London, says that even consultants, at the top of the medical hierarchy, can be plagued with doubt. While many of their uncertainties relate to the science of medicine, diagnosis, prognosis and treatment, they experience many unknowns in managing patient care. “Do you need to go and review that patient or can you take what the junior doctor has said at face value?” says Collini. “Do you have to go and see the patient yourself? Should you move the patient? Which patient should you move out to make space for the next emergency? Should you send people on their breaks? The amount of decisions that you have to make in an emergency medicine shift, particularly as a more senior doctor, is very, very high.”
Collini’s work also casts light on doctors’ responses to uncertainty. Several of those studied perceived a pressure to demonstrate certainty in front of both colleagues and patients. “There’s this idea that as a consultant doctor, you need to be certain and definite, that you should have all the answers,” says Collini. “Patients often have expectations of certainty from their doctors because people don’t talk about, and one of the reasons we don’t talk about it is because it’s aversive.”
This can lead to doctors attempting to “control” certainty by ordering further tests, while trying to achieve a fragile balance of expressing uncertainty alongside retaining their credibility in front of others.
It’s hard for all of us, whether as health professionals or human beings, to realise that often there isn’t one right way. We need to really accept that at a gut level, not just intellectual, and then to be able to let go sometimes and forgive yourself and forgive others
— Paul Han, a senior scientist at the US National Cancer Institute
Such research highlights a central problem – medicine is a messy and complex activity, but our human instinct, for both patients and healthcare professionals, is to crave certainty. Beyond this, there is an invisible cultural norm that casts the patient in a position of “not knowing”, and the doctor as “all knowing”. But as patients such as Deirdre Collins become increasingly better informed and medically literate experts in their own condition, and healthcare professionals struggle to keep up to date with rapidly expanding scientific knowledge, how can this shift be negotiated?
In recent years, regulatory medical bodies around the world have added uncertainty management as an essential competence expected of a doctor. This, in part, has led to a surge in studies looking at how to train doctors for uncertainty. Research has highlighted that small group, simulation and clinical learning activities can contribute to this. My own research at RCSI Dublin uses an educational escape room to trigger uncertainty experiences that medical students can explore and debrief with an experienced tutor.
However, it’s likely that more fundamental culture change is also necessary. Collini says: “If we start at the beginning at medical school, I think there needs to be more emphasis on the uncertainties of medicine, because often students are coming from school where it’s very much a regurgitation of facts and there is a right or a wrong answer.
“If we’re looking at the social world, and all of medicine is happening in the social world, we need to expand our students’ thinking so they go beyond [the] stance that there is one right answer. This idea that there is an external reality that, ‘I’m going to be able to capture if I just look hard enough’... We need to challenge that.”
Collini advocates for open dialogue around uncertainty, and achieving change through “talking about it explicitly, role modelling, talking aloud, and creating reflective spaces to discuss cases where there isn’t a right answer”.
Han also agrees that culture change is necessary. “Our usual mode as clinicians is to just try to make uncertainty go away or reduce it. But, we know that most uncertainties are not completely reducible. We’re so used to controlling and fixing and making things go away, whether in our own lives or as health professionals. That’s where it becomes almost an existential kind of problem in that it is a life problem. Patient uncertainty is human uncertainty.
“For me, I’m coming back to these sort of personal qualities or virtues or mindsets that part of it is getting into a space of acceptance. I think that that requires characters or virtues like humility and flexibility and courage,” he says. “I feel that for clinicians as well as patients, what’s important is to rely on other people to share uncertainty, just reassuring people that we’re going to face it together. That presence, that simple presence, is impactful.”
These sentiments are shared by Collins, with her advocacy work becoming an important coping strategy. “To me, Sjögren’s Ireland has been a way to manage some of the uncertainty,” she says. “This strength in having a community who knows what you’re going through and understands what you’re going through... it’s solidifying. Just being able to talk about it makes a world of difference.”
Collins also agrees that patients and doctors need to be realistic about the extent of what modern science can offer us. “There is always going to be uncertainty and you can’t control everything, but a lot of the uncertainties and disappointments are temporary. When you come out of a medical appointment and you’re disappointed and feeling really pessimistic, it’s temporary. That one opinion, that one appointment, does not define your illness or your prognosis and that’s wonderful.”
And what of my wayward facial muscles?
While I’m still on a neurology waiting list, my brain scan was negative (yes, my brain is still there; no, I don’t have a brain tumour). My symptoms have subsided to the point where I no longer resemble Inspector Dreyfus from the Pink Panther. The implications of stress (PhD studies, work, parenting and a recent separation) seemed to check out.
Overall, I’ve realised that seeking resolution to one question can open up several more. However, we can work to reflect on our uncertainties and pick our battles.
As Han says: “It’s hard for all of us, whether as health professionals or human beings, to realise that often there isn’t one right way. We need to really accept that at a gut level, not just intellectual, and then to be able to let go sometimes and forgive yourself and forgive others.”
- Jenny Moffett is an educationalist based within RCSI’s Health Professions’ Education Centre