Multidisciplinary resources to help patients to manage breathlessness due to underlying chronic diseases including COPD, Pulmonary Fibrosis, Lung Cancer and Heart Failure.
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Patient Information Videos
With thanks to LTHT Respiratory Specialist Physiotherapist Naomi Nixon (Leeds Teaching Hospitals) & Sammy Greenwood Specialist Physiotherapist (Sue Ryder Wheatfield’s Hospice) in collaboration with Gemma’s Hospice in the production of these videos.
Breathlessness – Introduction
This video provides techniques and strategies to help manage long-term breathlessness, including breathing exercises, body positions, and tools to improve comfort and control.
St Gemma’s Hospice – Breathlessness (introduction)
Breathlessness can be disabling, frightening, and distressing for you and your family or carers. The information in this video is designed to help you manage your stable long-term breathlessness. If your breathing is getting worse or you are experiencing breathlessness as a new feeling, it is important to seek medical advice. Breathlessness in itself is not harmful; you will recover. It may not be possible to change what is happening in the lungs and heart. We cannot take the breathlessness away, but this video will demonstrate some tools to help you gain confidence and control in managing your breathlessness.
The vicious cycle model both helps give an explanation for the increase of the symptom and leads to potential ways of managing it. There are three parts of breathlessness management: breathing, thinking, and functioning. Within each of these, there can be specific unhelpful emotions or behaviors that develop. These then lead to three interrelated vicious cycles that prolong and worsen the symptoms. This model helps individuals, carers, and professionals understand why a symptom may be continuing or worsening. It can help us understand which part of breathlessness management it would be most helpful to focus on. In this first video, we will focus on the breathing element of the vicious cycle.
The main muscle of breathing is the diaphragm. This is a large, flat sheet of muscle covering the base of your rib cage. As you breathe in, it moves down to help draw the air into your lungs, pushing your tummy forward as it moves.
When you breathe out, it relaxes, moving upwards, returning to its natural dome shape and allowing your tummy to rest back in. The diaphragm muscle does not tire easily. When you become breathless, there are many muscles around your neck and shoulders that assist. These are called breathing accessory muscles, and their main function is to move the neck and arms. They are not designed to be used for long periods, unlike the diaphragm. Therefore, long-term overuse of these muscles for breathing can make them become tight, stiff, and sore.
Positions to ease breathlessness are often used in conjunction with breathing techniques and facial cooling. You may instinctively use an effective position already to help ease your breathlessness.
Find what posture works best for you. Here are some you can try: In each position, be mindful to allow your shoulders to drop and your arms to flop or relax. Leaning forwards improves the position of the diaphragm and abdominal muscles. This is a lean from the waist and not a full bend. You can use pillows, the back of a chair, or a walking aid to support you, or you may prefer to be more upright, relaxing your neck and shoulder muscles, letting your head relax back. Relaxing the shoulder girdle can also help improve the effects of the muscles that attach between the ribs and arms, therefore increasing their ability to help with breathing.
The use of a mobility aid to ease breathlessness when walking is recommended. It allows you to be in the forward lean position, which improves the efficiency of your breathing muscles during activity. It has the additional benefit of helping to slow you down if you rush and boosts confidence, thereby reducing any anxiety.
When in bed, lying on your side propped up with pillows may help with your breathlessness. Lying on your side will allow the abdominal contents to move away from the diaphragm, reducing restriction of movement. A hand-held fan provides the cooling fresh air sensation that may help relieve your breathing and help shorten your recovery time after exertion. There is some evidence that a cool draft of air from a handheld fan can be very useful in reducing the feeling of breathlessness. Aim to have the fan 6 to 8 inches (15 centimetres) from your face, directing it at your nose and mouth. Fans with three or more blades seem to be most effective as the airflow is stronger. You may also find a desktop or floor-standing fan draft from an open window or a cool flannel on your face might also be helpful.
When using techniques to be more comfortable, some people find narrowing their mouth slightly as they breathe out makes their breathing feel easier. This is called pursed lips breathing. It helps by creating a back pressure that supports to hold your airways open, allowing air to leave your lungs more easily when breathing out through narrowed lips. Imagine blowing out a candle.
Use the recovery breathing technique when you feel extremely breathless or panicky. This combines all the techniques you have seen in this video. Focusing on a relaxed breath out will help to calm your breathing more quickly and allow for a more satisfying breath in. You might find it helpful to also push your lips on your breath out. This can help you feel more in control of your breath. To help you remember this technique, think of the three F’s: fan, forward lean, relax (or drop shoulders and flop arms), focus on the breath out, and relax your upper chest. Try to breathe out onto the fan. Do not worry about the in-breath; it will take care of itself.
Another technique to help control your breathing is using the shape of a rectangle to guide your breathing control. The rectangle shape can be found in many day-to-day objects such as a mobile phone, a window, a television, or some people like to keep a special rectangular-shaped card as a guide. Use the two long sides of the rectangle as a prompt to breathe out a longer, slower breath. On the short side of the rectangle, the prompt is to breathe in. This is shorter than the breath out, but not necessarily sharp. For example, breathe in for the count of two, breathe out for the count of four. Practicing this technique when your breathing is more settled will help you put it into practice when you start to feel breathless and aid you in gaining improved control.
Breathlessness & Fatigue
This video provides strategies for managing fatigue and breathlessness through activity, goal-setting, pacing, prioritizing, and using helpful equipment to improve daily life and maintain well-being.
St Gemma’s Hospice – Breathlessness and Fatigue
Breathlessness can have a big impact on your day-to-day activities. When you significantly reduce your levels of activity or movement, it causes your muscles—including those that support you to breathe—to become weaker. This often comes hand in hand with fatigue. Fatigue is an overwhelming feeling of exhaustion that can affect you both physically and mentally.
Breaking this cycle by continuing to do some sort of activity each day can help to improve your symptoms. Activity can range from taking the dog for a walk to walking up the stairs in your home, or from meeting a friend for a drink to having the energy to sit and read a book.
Setting personal goals can help motivate you from day to day. Often when asked to think about what your goals are, it’s tempting to think of big things. Try breaking them down into smaller chunks that feel realistic and achievable. This will help you to stay motivated and more likely to set another goal.
A helpful way to manage your fatigue is to remember the five Ps:
Prioritizing
People often focus on the things that have to be done—having a wash, cooking a meal, or making a drink. Try to think about what is important to you and what makes you feel good. This can restore some mental and physical energy.
Planning
Use a diary to identify times where you feel more fatigued. You can then organize and space out your activities to find a balance between activity and rest. For example, when preparing a meal, focus on one part of the task at a time where you have more energy.
Pacing
Try not to rush your activities. Rushing often leads to an increase in both breathlessness and fatigue. Slow down your activities. This will take up less energy and allow you to do more.
Permission
Fatigue can feel physically and mentally overwhelming. It is important to listen to your body and allow yourself time to adjust to a new routine. Be patient with yourself and give yourself time to do things. Give yourself space to recognize the things that you have achieved.
Positioning
The way you are positioned during activities can help you to save energy. For example, if you are brushing your teeth, preparing a meal, washing up, or waiting for the kettle to boil, sitting on something such as a perching stool can help you to save energy that you can then use for something that is more important or enjoyable to you.
Other pieces of equipment, such as a frame to help you push up from the toilet or a walking aid that allows you to have opportunities to sit and rest while out and about, can be helpful. There is a range of equipment that might help make day-to-day activities feel easier.
Fatigue can also have an impact on relationships, intimacy, and sex. It can be difficult for those around you to understand how fatigue can affect day-to-day life. Sharing information with them, talking to them about the impact it is having on you, and discussing your goals can help them to better understand what you are experiencing.
Healthy intimate and sexual relationships can have a positive impact on your quality of life. It is important to allow yourself to find time and opportunity for moments of physical intimacy and emotional connection.
Breathlessness & Anxiety
This video explains how to break the cycle of breathlessness and anxiety by using positive strategies like relaxation, distraction, and mindfulness techniques.
St Gemma’s Hospice – Breathlessness and Anxiety
The vicious cycle of breathing model both helps give an explanation for the increase of the symptom and leads to potential ways of managing it. There are three parts to breathlessness management: breathing, thinking, and functioning. In each of these, specific unhelpful emotions or behaviours develop. These then lead to three interrelated vicious cycles that prolong and worsen the symptoms.
This model helps individuals, carers, and professionals understand why a symptom may be continuing or worsening.
It can also help us to understand which part of breathlessness management it would be most helpful to focus on.
Anxiety plays a big part in breathlessness. The anxiety spiral begins with a stressful event, long-term worry, or an unpleasant physical situation or illness. Your body then begins responding to this as though it were in danger. In response to potential danger, the hormone adrenaline is rushed into our bloodstream to enable us to run away or fight, better known as the fight or flight response. This happens whether the danger is real or only a perceived danger when actually there is none.
The body and mind begin to panic about these sensations. Mentally, it can feel like an increasing sense of dread. The fight or flight response would ordinarily cause someone to face the threat or flee, but with worry and anxiety, there is no threat and nowhere to run. Physically, the body has a number of reactions, including breathing faster. After a short while, the breathing muscles will become tired, which ultimately leads to more shortness of breath.
This additional breathlessness only feeds the sensations of anxiety and panic, which again increases the need to over-breathe, resulting in more shortness of breath. So in essence, the sensations themselves become a trigger for further panic. This allows the spiral to continue on and on.
So it’s important to look at breaking the spiral. If we can look at breaking the cycle, then we can help to reduce the panic and breathlessness occurrences.
You become stressed, shortness of breath begins, anxiety starts, breathing becomes faster, breathing muscles tire, shortness of breath increases, anxiety increases, breathing becomes even more rapid, breathing muscles tire even more, panic.
One strategy that could help break the cycle is doing an enjoyable activity, such as a hobby or interest, to help distract you away from the worrying thought. Another could be listening to some music or doing some relaxation. Doing some visual strategies such as mindfulness or meditation can help with learning to put these worrying thoughts aside.
Breathlessness using the tools including use of handled fan
This video provides practical tools and strategies, including breathing techniques, pacing, and involving family, to help manage breathlessness, fatigue, and anxiety effectively.
Breathlessness using the tools including use of handled fan
In the information video so far, we have discussed various methods and actions that may help improve your ability to manage your breathlessness, fatigue, or anxiety. Think of these as tools in a toolbox, there to help you. Each person will benefit from using different tools, and some of the tools might be more effective for you than others. The tools will be easier to use if you have practiced them before.
Ideally, it is best to practice them when you are feeling more settled and your symptoms are more controlled. Then they’ll be more familiar to you if you need to use them when your symptoms deteriorate. It can help to have an action plan. Learn to recognize the signs that your symptoms are deteriorating and plan which tools to use first to help and which to add in if the symptoms are not settling.
Remember that any anxiety about your symptoms will exacerbate them, so recognizing what is normal for you, that you do have the tools to help reduce your symptoms, and that they will settle are all important in your action plan.
Share your plans and tools with your close family and friends. They will be keen to support you and will want to know how to help. They may be able to help by getting your fan or by bringing you a seat, for example. If you feel too breathless to talk, you can raise your hand to indicate to family you need time, but they need to understand this sign and recognize that you are not ignoring them or dismissing them.
Involving family and friends can also help them to assist you with strategies such as pacing and prioritizing and enable them to understand why it’s important for you to have help with some things, giving you the energy to focus on others.
So to remind you of the tools to self-manage your symptoms for breathlessness:
Positioning: Leaning forward and flopping
Use the fan: A three-blade handheld fan across the nose and mouth
Pursed lips breathing: To retain some pressure in the lungs
Relaxed breathing: Using the diaphragm to breathe rather than the neck and shoulder muscles
Breathing around the rectangle: To slow your breathing rate with a focus on the out-breath
For managing fatigue:
Prioritizing: Do I have to do it? Do I want to do it?
Planning: Can I share it? Can I take it off my list?
Pacing: Do some activity, then have a rest. Break down the activity into smaller, more manageable sections.
Permission: Be patient with yourself and acknowledge you will not be able to manage doing this in the same way as you used to.
Positioning: Use equipment to help. Sit for tasks rather than stand.
Break the cycle of anxiety: Understand that anxious thoughts can exacerbate symptoms without any physical cause. Find ways that help you to relax and reduce the anxious thoughts. This could include listening to music, doing relaxation, or visualization.
Useful Websites
View mental wellbeing and lung health recourses on the European Respiratory Society Website.
Professionals
Members of the team caring for patients with breathlessness due to chronic disease include consultants, specialist nurses and allied healthcare professionals from LTHT respiratory and palliative care teams, Leeds community respiratory team and St Gemma’s and Wheatfields Hospices.
Information for professionals
The following links are intended for healthcare professionals only.
Leeds Palliative Care network provides resources for professionals View their Managing breathlessness and Opioids for breathlessness in advance disease guidance.
Search for Breathlessness Crisis Plan and Opioids for Breathlessness in Advanced Disease on Leeds Health Pathways