For much of 2020 and, indeed, for some years to come we will have discussions and debates about the changes that happened as a result of the coronavirus pandemic. There are already many sad and distressing stories but also some examples emerge where the changes in response to covid-19 had some benefit.
Many years ago, family doctors did clinical visits by going to patient’s homes to see them. There was time to listen patiently and for the family to understand what the doctor explained and for them to contribute any observations that might help with diagnosis and treatment. So there was a degree of collaborative memory and maybe not much discussion of recall error or bias.
Fast forward to 2021 and the demand for health services means that consultation times are short, lead times between making the appointment and getting to see the doctor are sometimes an extra cause of anxiety and an increasing number of consultations take place by phone or even video link. The consultations are often just one doctor with one patient and no witnesses, very confidential.
Before the first UK lockdown just 10% of consultations were remote, during the first lockdown this rose to 80% and since then it has been 50%. In the future, there will be circumstances that require place-based in-person consultations but many appointments will be remote. It is important that they are effective. Patients don’t want the hassle of the journey and the cost of the car parking, unless it is really necessary for their healthcare.
It is easy to imagine that if consultations are not recorded that both individuals, doctor and patient, have a different recollection of what was said and how it was intended to be interpreted. Doctors fear litigation. Can we help reduce this by having better ways to minimise recall error where self-report relies on patient recall?
Do we need to record consultations to avoid misunderstandings?
There’s increasing discussion of whether it is useful or even wise to record some consultations because of the misunderstandings that can arise. Some people say that patients forget up to 80% of the medical information given at these consultations. Is that not a huge waste of valuable time if the advice is not acted on as expected?
Lack of understanding is associated with patient dissatisfaction, poor adherence and reduced capacity for shared decision-making. Ranjana Srivastava suggests “the fog of treatment, coupled with all the elements of a life-threatening diagnosis makes every consultation a challenge to be heard and understood”. Sometimes, in the doctor’s assessment the consultation has gone very well but in fact the opposite occurred, Srivasta highlights an example where a family is told about a terminal illness. How do you empower and engage a patient who cannot tell you all the details – who gives an inadequate history, doesn’t absorb the information given or recall what has been said to them?
Will the stress and anxiety associated with a serious diagnosis mean that the listeners do not hear all that was said in the way it was hoped? Will recording the conversation make everyone feel more relaxed or more nervous or cautious about what they ask or say?
When are video consultations appropriate?
Trish Greenhalgh has produced guides for UK practitioners doing video consultations – this became necessary after covid-19 made social distancing a high public health priority. Video consultations allow all parties to stay in their preferred setting and remove a lot of the stress of getting to the right place at the right time.
Interestingly, she notes that video consultations are appropriate for non-covid patients where trade-offs between attending in person and staying at home favours the latter. This can include routine chronic disease check-ups and giving counselling and support. For anxious patients, whether or not they actually have covid-19 this could be a good idea.
Healthcare professionals have appreciated the effectiveness of video consultations throughout the pandemic, with many stating they are here to stay. They are also discovered which patients felt them to be beneficial, probably reflecting how this useful service was so under utilised prior to pandemic.
What about brain fog?
“Brain fog” is a term that is used for “mental fuzziness” where people feel their brain is working more slowly and experience difficulty with short-term memory and processing information. Everything takes longer, patients are more easily confused and overwhelmed. Brain fog has been associated with post-viral infection or after hospitalisation or intubation and now is widely associated with long covid. Brain fog might be a consequence of the drugs used or if other organs are not functioning properly. Yet it is not just old people or those with covid-19 that have such symptoms.
The term is now more widely discussed since it was recognised as a symptom of long covid, even if not always a characteristic of covid-19 itself. Brain fog is very much a deterrent in consultation with the patient needing some form of backup or support (e.g. a digital diary displayed on the doctor’s secreen), indeed taking a good history is seen as a vital part of remote consultations. “Brain fog” is a colloquial term for a debilitating symptom and not fully understood within the medical profession – but they can expect to hear it more often while the world struggles to contain and prevent covid-19 and all that follows.
While having “brain fog” certainly won’t help with recalling other valuable details in medical consultations, we must recognise that it existed pre-covid (e.g. with fibromyalgia) and will remain a problem until the mechanisms of long covid are more fully understood.
Chronic illness and brain fog in place-based consultations
Travel can be especially problematic for many people with chronic illnesses – it requires a lot of pacing and planning of daily activities – maybe more than some doctors might appreciate. Patient charities and blogs report that travel causes flare-ups of symptoms for many patients with chronic illness. One patient observed
“For me being in a moving car flares my heart rate. My heart rate goes up to over 200+ bpm due to the movement of a car. So by the time I get to where I am going I am absolutely shattered, totally brain fogged and feel pretty bad overall.”
A lot of chronically ill patients, for example myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), have an issue with post-exercise malaise (PEM) and flare ups after travelling – even locally. A patient noted:
“Recall bias has happened to me before because of the journey to the appointments. By the time I have got to appointments, I am shattered, completely brain fogged and am barely functioning. So recall bias definitely then happens as I can barely function.”
Since 2020, the increased number of video consultations has benefited some patients with chronic illness because they haven’t had to travel to appointments.
Such patients can now benefit from using TIYGA’s smart connected diary to ensure that recall issues are a thing of the past. Observations are recorded in near real time and ready for the consultation, whenever it happens. People will continue to attend place-based consultations for physical examinations so we cannot expect that al consultations will be by video. If the patient has brain fog as a symptom of their chronic illness, the problem of recalling their lived experience could still limit the effectiveness of the consultation even when no travel is necessary.
Getting more value from consultations
If the benefit of the consultation relies on self-report and recall, we need to consider all the circumstances and choices around the consultation.
Sometimes the journey to the consultation can diminish the chances of success of the consultation. The healthcare professional can deliver their advice perfectly but if the patient is unable to give and receive information effectively, then this needs addressing.
Some brain fog is a symptom of conditions known prior to the coronavirus pandemic, some is a symptom of covid or long covid but in both cases it may be exacerbated by travel. When the “brain fog” problem is just caused by the journey, then the video consultation might make all the difference.
However, if the person has “brain fog” as a consequence of infection or medication or some other cause, independent of the journey, then the best solution is a of signs and symptoms soon after they occur and unaffected by brain fog. When this is presented in a structured way that can easily be interpreted by the healthcare professional the discussion can be effective even if the patient has some brain fog at the time of the scheduled consultation.
Time is your greatest asset (TIYGA), patient’s and professional’s time is too precious to waste on exchanges that could be more productive therefore it is crucial that everyone’s time is used to the maximum efficiency. It is not always best to simply schedule yet another consultation in a few weeks or months. The impact of recall error has been demonstrated with a cost‐effectiveness analysis using costs of doctor visits and a regression example predicting number of doctor visits.
Life is too short, too precious and too important. Let us learn the lessons from covid and take forward the best practices into the new normal for healthcare delivery.
Twitter – @tiygahealth