Treating breathlessness—why it’s important and finding new approaches: An interview with Anna Moore, respiratory doctor at Barts Health

Summary

A large number of people live with long-term breathlessness that has a significant impact on their daily lives. For some, breathlessness is not directly linked to an underlying, diagnosable illness, and these people can struggle to access effective treatment and support. In this interview, respiratory doctor Anna Moore explains some of the causes of breathlessness including its links to a wide range of socioeconomic factors. She outlines the person-centred, multi-disciplinary approach her team at Barts Health is taking to help people overcome breathlessness and highlights the need for more research in this area.

About the Author

Anna is a respiratory doctor who has a long-standing interest in breathlessness management, now paired with medical education with a focus on planetary health. Alongside her work in the breathlessness clinic, she is the Population Health Education Fellow for Barts Health and enjoys seeking out common ground between the two roles—there's lots to find! 

Questions & Answers

Hi Anna! Can you tell us who you are and a bit about what you do?

My name is Anna Moore and I'm a respiratory doctor. I work in the breathlessness service at Barts Health NHS Trust, am an Education Fellow in population health and have an interest in planetary health education.

We have a specific clinic for breathlessness at Barts Health because we know that it’s a common problem that can be really distressing and limit people’s ability to live their life to the full. It can indicate a serious underlying health problem, and it can happen even when there is no diagnosable health condition. Breathlessness is often also experienced to a degree that is out of proportion with the cause, so for example, someone could be living with a very mild lung condition but be very breathless, or conversely have very limited lung function and not be breathless at all. 

Everyone experiences breathlessness differently and it can be linked with several other symptoms, depending on the underlying cause. It’s super interesting!

Can you tell us a bit about how breathlessness has been managed historically in the NHS, and what some of the issues are with that?

As doctors we are taught to approach symptoms by thinking about the underlying pathophysiological cause, so medical students are taught that breathlessness is a symptom resulting from a condition such as lung disease or anaemia. When we see breathlessness in a patient, we're always thinking about what's causing it, which is important because leaving somebody with untreated asthma or untreated heart failure wouldn’t be right! However, there's a persistent problem in medicine where we fail to recognise that breathlessness also needs treating in its own right. Breathlessness is often approached as though it has a linear relationship with the underlying cause, which we know isn’t true. This means that people who are experiencing breathlessness which is “out of proportion” to their condition, or who don’t have a diagnosable condition, don’t get the help they need. 

If you look at the NHS England breathlessness pathway there are various steps which are mostly about investigation. There's this arrow at the bottom that says ‘and manage the breathlessness’. It does include lots of useful pointers, but the way the whole pathway is structured means that you’d be forgiven for thinking that it’s not an integral part of managing someone living with breathlessness. Added to this, especially for doctors, there is little to no training on how to help people manage breathlessness. Because of this, patients are often left with no options to help with their symptoms and their breathlessness is ignored, minimised or dismissed. This is hugely detrimental to the patient’s long-term health, and their relationship with healthcare providers. 

The exception to this is at the end of life; there is very clear NICE guidance on managing breathlessness in palliative care and teams are often very good at managing it. But there's a huge swathe of people who are not at the end of life but who do have life-limiting breathlessness. 

Why might people experience disproportionate breathlessness?

Many clinicians will tell you that they see people who live with breathlessness even when there is no medical cause, or after their medical issue has been dealt with. Often, the pattern of breathing has changed to adapt to the body’s needs during a time of acute injury or trauma. These breathing issues can persist after recovery or after the event has passed. 

For example, someone might have had an operation on their heart, and this could be quite a scary time for them. Added to that, if the recovery doesn’t go to plan because of a postoperative infection, the body, already having to work hard following the surgery, must work even harder to breathe. In this situation, the person’s breathing pattern will have changed to adapt to the circumstances. For example, when resting, they may have use extra muscles in addition to the diaphragm. We call these “accessory muscles” and they would only normally be used when doing exercise. This is a significant change in the pattern of the breathing, but it is keeping the person safe, getting the job done. But sometimes, even after recovery from the surgery and infection, the breathing pattern remains.

The problem is that using the accessory muscles to breathe is much less efficient than using the diaphragm, and that can itself lead to breathlessness, discomfort and even pain, so a vicious cycle starts to develop. This is then complicated by losing fitness due to deconditioning and the breathlessness gets worse. By this stage, our medical model doesn’t help us understand the breathlessness, because the initial problems—the surgery and post op infection—are gone!

It’s also important to understand the impact of trauma and personal issues on a patient’s breathing, and the role of fear. This is not something that is at all well taught at medical school or in training. I was a third year respiratory registrar the first time I heard the word ‘breathlessness’ paired with the word ‘frightening’. It was a bit of a lightbulb moment for me—it hadn’t properly occurred to me before that breathlessness was so closely linked to our experiences and mental state. 

How has your understanding of breathlessness changed over the past few years?

In 2016, I visited the Cambridge Breathlessness Intervention Service. They took a completely different approach to anything I had seen before, based on the breathing, thinking, functioning model for managing breathlessness.

1. The change in muscle use I’ve already described is an example of the “breathing” cycle. Other examples include very fast, shallow breathing, or breathing through the mouth but not the nose. These breathing patterns are all inefficient and therefore make the problem worse. 
2. The “functioning” cycle describes the way that people lose fitness as a result of being breathless. 
3. The “thinking” cycle for me is fascinating. There are multiple levels that this works on, the most obvious is that if you feel anxious, this switches on all sorts of protective mechanisms which we might call the ‘fight or flight’ response. If people are living in a chronic state of stress, fear or anxiety then this response might be switched on all the time, and that is not only exhausting but actually can cause more breathlessness, because the feeling of breathlessness itself is frightening, so you end up in another vicious cycle.

This model helps us work out where in these cycles the person is and what you can do to interrupt them. It made me realise we could do something to really help people living with breathlessness. At the same time, I also read about some research done at Kings for people receiving palliative breathlessness intervention, which found that the people with non-malignant disease lived longer if their breathlessness was treated. It showed that by not treating these patients we are denying them the opportunity to live longer, healthier lives, so it’s a proper justice issue!

I went on a training course with BIS and started using the breathing, thinking, functioning model in practice. When I spoke to colleagues, it was those working in the community—mainly physiotherapists and specialist nurses—who were most enthusiastic about interventions to improve breathlessness. I was lucky that one of the consultants at Barts, Will Ricketts, was also very interested in breathlessness. At that time, he was planning to set up a specialist clinic, and I ended up working with him there after a couple of years out working in education.

Tell me about your clinics—what’s different about how you run them?

We take a multidisciplinary and integrative approach to try and work out what’s driving a patient’s breathlessness. I would describe our clinic as part diagnostic, part therapeutic. 

The first time I see a patient, I explain clearly who I am and make sure we are on the same page in terms of the reason they are here. I ask them to tell me the story of their breathlessness and listen for clues as to the underlying issue. I’m listening for when it started, what was going on for them around that time, when they have symptoms now, how they feel when that happens and what activities it is preventing them from doing. Understanding the context of each person’s breathlessness is vital to our approach. I’ve discovered that holding this conversation effectively is quite a skill; if I just ask directly about breathlessness, I probably won’t get to the heart of what's going on. We’re aiming to create a therapeutic safe space for people—it’s about giving time, attention and validation to their stories.

Of course, I am always listening out for any underlying medical causes, but also for what might be causing them. We have diagnosed several people with asthma in the clinic, but what we have also uncovered is that this is usually tied to a social or environmental factor such as poor housing. People’s lives are complex and so are the underlying causes of their symptoms; while you might have asthma, made worse because of your environmental exposures, the chronic stress of living with those environmental exposures may also be making your breathing pattern worse. 

That's where the breathing, thinking, functioning model is helpful because we can break breathlessness down into three cycles which helps us to see the mechanism more clearly. When we talk about the thinking part, people can often identify for themselves the thoughts associated with their breathlessness.

If a patient seems ready, I'll try and make a goal with them about what they’d like to be able to do in six months, when I am likely to see them again for a follow up. If there's a breathing pattern disorder going on, I’ll ask them to go and see one of our clinic physios. Their input is vital, not only because they are able to assess what is happening physically when a person breathes, but also then work with them to “reset” the breathing back to a healthy pattern. 

Identifying social determinants that are contributing to breathlessness is a key part of your approach. How do you respond to these issues which lie outside of the scope of healthcare?

It’s difficult, because often we uncover needs that we can’t fix. However, there are certain things we can do to support patients to deal with housing, finance and other issues. For example, the trust has created a template letter that we can adapt for people to take to their landlord, which lists the landlord’s legal responsibilities to provide safe and appropriate housing. We can also communicate with the environmental health team at the council and signpost people to other organisations and support groups that can help them.

However, as I said before, the problems people face are complex and an issue like mould might be just one factor amongst many stressors. 

Keeping clear records about the causes and context of a person’s condition is vital so that we can learn more about how social determinants affect their health. It also means we can communicate information back to their GP that might allow them to offer additional support. I often ask GPs to refer people to social prescribing because recovery is about being connected with people who can help you through chronic stress. I’m very aware of the cultural sensitivities around different activities, so it’s helpful to have a range of options available.

Really knowing the community we serve is important and we are keenly aware of the challenges of reaching patients from different cultures and understanding how the experience of breathlessness is described in other languages. This is something I really want to understand more. 

How has your work changed your view of patient safety?

I see a lot of trauma caused by experiences of healthcare, and part of what we are doing in our clinic is rebuilding trust with patients and making sure they feel listened to. I’ve been surprised by how often a person’s trauma is related to an experience of healthcare—whether it’s a medical emergency such as being on a ventilator or even an insensitive comment made by a member of staff.

I think there’s much for us to learn about the impact of how we communicate with patients. I know everyone is busy in the NHS, but it’s vital that we take the time to explain what we're doing and listen to patients’ concerns. It’s hard when you're burnt out, but we can cause so much long-term harm by not treating patients like people. 

The other harm we can cause in healthcare is over-investigation. At the point where I see people, they have often had many investigations and scans, and there are literally no other tests we can do—yet we haven’t been able to say why they are breathless. That's a psychologically unsafe place to be as a patient—I know that something's wrong with my body, but no one can tell me what it is and no one's listening to me. It’s therefore vital that we bring people back to a place of psychological safety by helping them understand other factors that may be contributing to their breathlessness.

What difference is your approach making?

We don’t have any quantitative evidence yet, but we are seeing patients recover after years of having breathing issues. Mostly that results from the work that the physiotherapists do, but I have had several patients leave my clinic room saying, “Thank you, you’re the first person that has ever really listened, or asked me that question.” It’s the most rewarding thing when someone says that they can understand their breathlessness and that they can do something to improve it themselves.

From my point of view, the anecdotal evidence demonstrates that we are improving people’s ability to engage in their care and helping them find solutions. By giving people the tools they need to manage their breathlessness, we are hopefully reducing their use of NHS services. Getting some clear evidence is something we need to focus on—if anybody wants to come and do a research project looking at the outcomes of the patients who've seen us, that would be absolutely brilliant!