GPs’ experience of difficult decisions in people with dementia who have an acute illness: a qualitative, semi-structured interview study

Overview of themes

We identified four high level construct key themes: discretion, pressure of time, uncertainty about translating policy and guidelines, and diplomacy. These are described in more detail below.

Discretion

GPs used a substantial amount of discretion in the execution of their work. Whether participants were faced with best interest decisions in the absence of a next of kin during emergencies, withdrawing a patient’s existing medication, initiating palliative care, or determining a patient’s capacity to drive, GPs expressed their discretionary influence when using available information in the interpretation of existing guidelines. GPs described this skill as essential to carrying out their role in difficult situations, as guidelines and ACPs were insufficient if used solely in determining the final decisions to be made.

GPs expressed this power of discretion when they had to either draw on their ‘clinical experience and judgement rather than a protocol’, make judgements on whether to go against ACPs, or know when withdrawing medications from patients was in their best interests.

In some situations, GPs had to rely on their experience to make clinical judgements rather than protocols. In the scenario below the GP had to start a patient on end-of-life medications out of hours without any input from next of kin because they were unavailable:

‘it was sort of much more difficult than any decision I had made before because I had to make the decision without someone who had looked after the patient.... I think these decisions are just made from yourself and from clinical experience and judgement rather than a protocol or tick box.’ (Interview 6, Initiating palliative care)

In some situations, GPs have had to re-evaluate ACPs and consider if it would be for or against the best interest of the patient:

‘But you can sometimes go against it [ACP] you know, if the situation changes or there is a condition, and you can go “no this is not what the care plan is about here”. So if they are in agony and in pain and they are riling about and really in distress or sometimes the fast track teams do not have enough capacity to take on new people and look after them. Then I think “hang on I can’t leave this patient in their home because we don’t have the right thing in place”’ (Interview 7, Interpreting an ACP)

In the scenario below, the GP had to make the difficult decision in the patient’s best interest to stop all medications even though their condition was not 'end of life'. In this GP’s reflections, being assertive when faced with difficult decisions was a key characteristic of the GP role:

‘You should not be scared. You have to tell the family honestly and openly about withdrawing the medications and explain to them why. You have to be able to tell them “These medications which I thought before were important are actually not needed any more”’ (Interview 1, Withdrawing medication)

In summary, GPs have considerable discretion in clinical decision-making. From the data, GPs did find this skill essential in carrying out their role in difficult situations, as guidelines and ACPs were insufficient for sole use in determining the final decisions to be made.

Working under pressure

Working under pressure as a theme describes the time pressures and limited resources that GPs encounter as they navigate through their work environment.

Our findings revealed that GPs’ translation of policies and guidelines is fraught with unexpected challenges and scenarios. Work pressures included limited time, insufficient resources, and a demanding workload when managing patients with dementia in acute situations, leading to feelings of frustration:

‘So from a personal side there was that pressure of time, pressure of other work inevitably and the slight frustration of something called through which you could have dealt with when other staff were available.’ (Interview 4, Unwell care home resident)

The theme ‘Working under pressure’ from this study typifies a street-level bureaucrat characteristic, where almost all the GPs felt the frustration of having to work with limited resources, while at the same time accepting that it was part of their role as a GP.

Uncertainty about translating policies and guidelines

From the data, GPs found themselves in difficult situations when managing care homes under COVID uncertainties and, in some cases, dealing with the translation of the Mental Health Act when different health and social care professionals have conflicting mental capacity assessments.

Some of these uncertainties were more prominent during the pandemic when issues around hospital bed capacities, lack of personal protective equipment, and delays in service delivery were considered during decision-making. In one scenario, during a COVID outbreak in a care home, the responsible GP was faced with many uncertainties, which were made more complex with the lack of test kits:

‘and there were a lot of things we had to contemplate. Like you know “Where to deliver best care?”, “whether hospital admissions?”, “Were we dealing with COVID or not?”...“What will happen if patients deteriorate?, would they be 'end of life'?” It was all very unclear and uncertain.’ (Interview 3, Outbreak of infection in care home).

In some instances, uncertainty about the translation of mental capacity assessments during best interest meetings involved conflicting ideas with other actors in the health and care system:

‘And I had to chair some meetings and there was a meeting where there was a standoff about whether or not he had capacity on his health and wellbeing. And the health professionals felt he didn’t have capacity ... But social services felt he did have capacity when they saw him (Interview 5, Conflicting mental capacity assessments)

Some GPs complained about the difficulty in getting input from the memory clinic during the pandemic, as an example, which was a major factor in delayed diagnosis of early dementia in primary care:

‘I think the biggest challenge like with any other case is the delay in suspecting someone has dementia. Unfortunately, there is always delay because there are no resources for them to be seen very quickly and obviously because of the pandemic the delay has sort of gotten longer’ (Interview 12, Diagnosis of dementia)

The quote above highlights how limited resources can be a source of uncertainty and challenge for GPs when executing their role. GP working environment and role is characterised by various rules, policies, legal procedures, and bureaucratic hurdles that they must in some way work with and towards; this is vital to the success of health programmes during situations of uncertainty.¹¹

Diplomacy

Even though our participants had some level of autonomy and discretion in some aspects of their interactions, in difficult situations they relied on their ability to persuade various people in the decision-making process to reach shared mutual goals. Most participants said they invested time and resources in building relationships because they found it useful for when a difficult decision had to be made in the future. Building trust in this way allowed GPs to use their soft power in influencing decisions:

‘So my feeling of acute illness in dementia, is that when you feel someone is getting dementia you really need to get those relationships going early on and get that understanding because that makes the acute illness that much easier to manage.’ (Interview 5, Diagnosis of dementia in a patient).

'So I built up that kind of trust between myself as the health professional, the patient, and the daughter being the point of contact. So yes it certainly helps to know the patient feels you have their best interest at heart and they trust your decision making.’ (Interview 12, Recurrent illness in a dementia patient).

In this study, GPs have used their position acting as facilitators during negotiations between various actors, creating an environment for collaborative decision-making. For example, there are instances where two relatives with a power of attorney holding differing views needed the GP to bring them to agree on a health decision:

‘Almost like a negotiation in a sense. Almost like preparing a case for a difficult negotiation. And certain people in those negotiations felt strongly one way or the other… In a best interest meeting, you had to be careful. You know, checking where the personal values stopped and where the objective best interests of what the person would want starts.’ (Interview 5, Best interest meeting about a dementia patient)

While in other instances, GPs were more effective when they sought collaboration and partnerships within the health system from other health professionals and the public:

‘I know this family so well, and I was going in my head “I need to help them” ... But thank goodness I came across a really helpful fast response lady and we kept in contact through mobile which was the quickest way and it really helped ... she did a home visit and called me on my mobile at 8pm that evening.’ (Interview 10, Patient refusing admission).

Street-level bureaucracy or street-level diplomacy

Our analysis found that GPs act as street-level bureaucrats using their clinical authority during decision-making processes that involve biomedical, social, and psychological factors. It was apparent when GPs were faced with time pressures and situational uncertainty, especially during the COVID pandemic, they expressed discretion and autonomy in navigating those circumstances. This power of discretion enables street-level bureaucrats to ‘apply their own judgements when dealing with the needs and wishes of citizens’.¹⁸ These themes are similar to those discussed in Lipsky’s concept, but only two street-level bureaucrat characteristics (discretion and autonomy) were identified in this study. Other themes revealed some characteristics not mentioned in Lipsky’s concept such as the use of ‘soft’ power to persuade and engage through ‘negotiations’ and ‘building of trust’. From the data, GPs during their interactions with actors used these ‘soft’ power skills to ultimately transform the decision-making field. The theme on diplomacy when integrated with the street-level bureaucrat theme creates a hybrid framework, which can be a unique lens to explore the role of GPs. The themes highlight the hybrid micropolitical role of GPs in primary care, which this study aims to contribute to the health policy debate about GP in primary care, most especially dementia care.