Empathy in general practice

Caring for patients with multiple chronic conditions is complex.

Health professionals who develop their skills in empathy can have a positive effect on patient health outcomes.

To gain a deeper understanding of how people deal with multiple complex and chronic conditions, we conducted an in-depth qualitative and human-centred study into the lives of 15 people. The study identified their attitudes, behaviours, needs and goals throughout different stages of their chronic conditions.

There were four key phases that were common across the individual’s chronic disease ‘journey’:

1. Journey of discovery
2. Diagnosis
3. Transition to a new normal
4. Ongoing management of condition(s)

Although each patient’s health experiences were unique, they shared similar feelings and insights. The single page executive summary My Never Ending Story simply illustrates the attitudes, behaviours, needs, and goals that were found throughout the research. Sam’s Never Ending Story was created from these insights so we could show the ups and downs faced by people with chronic disease, and share this with staff and stakeholders.

Based on the findings, we have put together a few practical strategies for ‘empathy in practice’ relating to the four key phases. They might help patients transition through these phases, and may also help new staff (and staff new to patient care) understand the patient experience.

During a patient’s journey of discovery

A patient’s experience with chronic conditions may start gradually, with a build-up of noticeable symptoms or pain. A ‘tipping point’ triggered by a significant event occurs and a patient will seek answers.

We found that during this time patients are feeling confused, scared, and uncertain about their future – they may not understand the connection between a symptom and a chronic condition. Developing an empathetic relationship between clinician and patient can be key to the relationship’s success long-term.

The following empathy strategies help a patient’s transition through this phase:

• Listen fully to the patient’s full description of their symptoms, daily struggles, pain points, and frustrations. Often, patients will unknowingly answer the majority of relevant clinical questions within the first minutes of speaking.
• Take a mental note of any non-medical information they bring up. This may direct you to their unvoiced agenda.
• Develop the "science of kindness". Be open and honest about tests, symptoms, and potential diagnoses, even if there is uncertainty. We found that patients were appreciative of honest and transparent conversations, even when the clinician was unsure about what was causing the problem.

During a patient’s diagnosis

This phase can make or break a patient’s mindset and understanding going forward.

A patient absorbs only a small amount of a regular GP consultation. In reality, this only equates to a couple of minutes of meaningful communication. Add a serious and life-altering diagnosis such as cancer, and patients can retain even less information.

We found that the labelling and explanation of why a symptom occurs comes with the widest range of emotions spanning from devastation, isolation, and confusion, to relief and liberation.

With this in mind, it’s a fine balance between delivering appropriate clinical information and ‘over-explaining’. As this short JAMA Intern Med. article on Shared Understanding With Patients says, it can sometimes be helpful knowing "where to find the evidence of risks and benefits and communicating the evidence in several ways". 

The following empathy strategies may help a patient’s transition through this phase:

• Encourage a support person to be in the initial diagnosis consultation with the patient
• Encourage the patient to bring along and start writing in a journal or personal information book, which they can bring to each subsequent consultation. Ensure the patient writes down the diagnosis.
• Direct the patient to a website you trust to ensure that if they want more information about their condition, they get it from a reliable source. For example, Better Health Channel or HealthDirect. We found that patients are curious and willing to seek out their own information, even if it comes from unreliable sources such as Reddit or Facebook.
• Identify two things that may change in the patient’s future, so they can begin to understand the impact of the diagnosis. We found that patients often want to know what their chronic disease path may look like. This can include their health behaviours, routines, or their ability to make life-changing (large) decisions.

There is also a useful checklist of what to ask the doctor that comes from the NHS in the UK to help patients remember and understand more when attending a consultation, for the benefit of both the patient and the doctor.  

During a patient’s transition to a new normal

After the initial diagnosis phase, we found that a patient now begins to understand the true impact of a chronic condition on their lives. Support networks may or may not develop. This phase is made up of adjustments, trial and error, new routines, and the need for connection.

The following empathy strategies may help a patient’s transition through this phase:

• Work with the patient to find a community group (or similar) that brings together people living with the same condition. Encourage participation and diversity of group type.
• Encourage the patient to use their personal information book to note down what is working and what is not, including any questions that arise day-to-day.
• Check in regularly on the patient's emotional wellbeing.
• Draw up a plan of quick wins/goals that can motivate the patient through their day-to-day activities. This can include medication schedules, small daily exercise goals, mindfulness sessions, or daily texts with their support person.

During the ongoing management of conditions

Patients now have a handle on what their chronic condition means and how it may impact their daily lives and new routine. There are good days and bad days. We found that the greatest struggle for people throughout this extended phase is staying motivated and focused on their health.

The following empathy strategies may help a patient’s transition through this phase:

• Share the responsibility of care coordination with the patient – allow them to take ownership where they are able, but be ready to support and co-ordinate care where needed.
• Help your patient to develop self-management skills; help them understand the clinical triggers of an acute attack, medication routines, and the importance of a healthy lifestyle.
• Encourage regular reflection – this can be in their personal information book, through an app, or 10 minutes of allocated time at the end of a week.
• Encourage activities out of the home. We found that the home is central to a patient’s ‘sick’ life; it stores their medications, reminds them of their isolation, and is a physical barrier to the ‘healthy’ world outside. Drawing the patient away from their home may preserve their sense of self and positive mindset.

Living with multiple chronic conditions isn't a linear experience. Many patients finally settle into a routine managing one chronic condition, only to start experiencing symptoms of another. It can feel like being dumped by a wave and managing to stand back up again, only to peek above the water to see another one heading towards them. Empathy plays a huge role, because better understanding of the patient's experience leads to better outcomes.

Associated tags

• chronic disease management
• empathy in general practice
• general practice
• practice management
• setting up a new general practice