How and why do we make decisions about treatment?

Elise Johanson
by Elise Johanson, Medical student at Cardiff University
May 2019
Patient journey through surgery

Every day thousands of patients decide to undergo surgery. In this post I discuss my insights from a series of interviews exploring how decisions are made and what the consent process feels like, from the perspectives of a number of individuals with different experiences of the surgical journey.

In 2015 the Montgomery vs Lanarkshire case revolutionised the legal approach to consent. This landmark trial ended the outdated, clinician-focused era of the Bolam test, which states ‘there can be no breach in the duty of care so long as the doctor acted in accordance with a responsible body of medical opinion’ and gave rise to a new legal standard, with a focus on patient autonomy and shared decision making. An important conclusion from the trial was that a doctor could no longer attach importance to risks on behalf of the patient, this was a decision the patient had to make themselves.

In accordance with this shift away from a paternalistic approach, the General Medical Council and Royal College of Surgeons changed their guidance, incorporating a twofold test of materiality: would a reasonable person in the patient’s position attach significance to the risk, but also, is the doctor aware that this specific patient would attach significance to the risk. This means that time must be taken to understand patient values, but evidence shows that this isn’t reflected in current practice.

In my own experience witnessing patients giving consent to surgical procedures, I’ve often been surprised by how little patients seem to engage with and own decisions about their care. Many have seemingly, at the surface at least, had a ‘doctor knows best’ mentality and were content with letting their doctor make decisions for them. In light of this, during my medical school placement with Concentric Health I’ve chosen to investigate the elements of the current consent process, how it impacts on the patient journey, and the perspectives of those involved at different stages of the process.

Searching for insights

Firstly, I created a brief journey map of the decision making and consent process, from a patient perspective. This helped me visualise the patient experience and who else was involved. It also highlighted areas where I didn’t have much information, and areas that I would like to investigate. I was particularly interested to explore the factors behind patient decision making outside the clinical consultation.

Using the journey map, I identified cohorts who could provide useful insight - through a series of semi-structured interviews - regarding current practice. These included patients and a variety of healthcare professionals that may have different experiences with, and perspective on, consent to treatment. I was aware that surgical consent was often cited during clinical negligence claims and as these claims may be an example of how consent practices can fall short I decided to seek an interview with a medicolegal expert.

Recurring themes and challenges

While undertaking the interviews, I was able to see recurring themes that were notable across all specialties.

The timescale of patient decision making was particularly prominent with interviewees reflecting that patients often make decisions immediately, and don’t take the additional time offered to consider their options.

Evaluation of the additional information provided to patients was another notable theme. I heard of patients being overwhelmed by the quantity of information given and experienced in another consultation a patient who, when asked to explain her reasoning for her decision was unable to recall any potential complication of the surgery and admitted to have only ‘scanned’ the information leaflet but couldn’t remember any specifics.

Considering decision making, I was interested in the factors behind the choice, what information patients prioritised and how they made sense of it. A nurse I spoke to explained that a challenge she faces is that patients often pay little attention to the complications of the surgery, as they don’t think it will happen to them, and brush off the possibility. This was somewhat at odds to a challenge an anaesthetist described around the public perception of certain complications. In her example, she explained patients’ perception of ‘awareness under anaesthesia’ was usually more dramatic than the reality, making having a balanced conversation about the risk difficult.

When evaluating the reasons behind a patient’s decision, my interviews suggested that complications of surgery don’t usually play a significant role, but rather decisions are often based on different, less obvious reasons. An example was a patient who explained that her decision to choose a transplant over dialysis was because the “machines are too scary”.

Across the different clinical areas patients reported feeling that they were unable to ask questions, or there were barriers to having their questions answered. A nurse described that many patients use their time with her to get clarification of what was discussed in a consultation and ask questions they were either embarrassed to ask, or felt were too personal to ask, their surgeon.

Due to the nature of current practice in anaesthetics, patient questions were also an issue here. As the majority will only meet their anaesthetist, and be told their anaesthetic plan, on the day of surgery, there is a short window in which to ask questions. It is important to note that in this small window the patient can feel very vulnerable and under a lot of stress.

During my discussion with the clinical negligence specialist we discussed ideas of how the consent process could be improved to reduce the risk of litigation and aid medicolegal investigation should it occur. For example, recording the consent consultation may support patient understanding through the ability to listen to the consultation again, but could also be used as evidence. It was clear that communication issues form the basis of the majority of formal complaints. I was interested to hear the viewpoint that the consent process could often benefit from being more concise rather than focussing on telling patients every detail and thus risk impacting on the communication of information through overwhelming.

Examples of practice that seemed to support the consent process included having consent clinics where there was protected time to discuss and ask questions away from the stress of the morning of surgery, and the use of personalised images drawn by a clinician and shared with the patient - in the example seen the patient found it invaluable to better understand what her operation would involve and where her scars would be.

Storytelling

Whilst there is variation in consent practice across specialties there are common issues that appear to apply across medicine.

The quantity of information given to patients at diagnosis, and the pressure to make a decision based on it can be stressful and increase patient anxiety. Other research has shown that the elderly and those of low socioeconomic status are less likely to feel confident to take significant control of their healthcare. This is a difficult area to navigate against the ethical obligation to fully inform patients of their options and support patients to make a decision aligned with their values. Decision-aids and the use of multimedia platforms to present information have been shown to improve patient understanding, retention of information, and perceptions of risks, allowing patients to take a more active role in decision making.

My results have shown that a large hurdle in informing patients is in explaining risks. Understanding statistics is difficult for physicians and patients alike. One solution offered to help is the ‘Best case / Worst case’ framework in which the clinician explains possible patient journeys in the form of stories. This method has been shown to promote shared decision making, especially in the elderly population.

Handwritten consent forms, the current practice in most healthcare organisations, have been shown to be suboptimal in many areas, including omissions of important details and complications. A digital consent process would be expected to remove the paper-related issues of the process but also offers an opportunity to tackle a number of themes highlighted during my interviews. Bitesize information shared over time could support patient engagement and understanding, including understanding of the anaesthetic plan. Multimedia content or audio recordings of consultations could consolidate conversations had, alongside patient notes and drawings which could be accessible to patients from their own home.

Reflecting on what I’ve learnt

Through these interviews I have gained an appreciation for the complexity of patient decision making and the journey patients go through from diagnosis to surgery. This project has provided me with an extensive introduction to consent, and has helped me to develop the skills to critically appraise current practice in order to highlight opportunities for improvement. I hope the areas of consent and shared decision making continue to receive the attention these core elements of healthcare deserve, so that we see a future where all patients feel empowered to engage in, understand, and own decisions about their care.