Breathlessness

The following information is taken from Supporting Breathlessness, UK. This information is designed as a source of help and advice specifically for informal carers (family/friends) of people with breathlessness, especially those suffering from breathlessness due to COPD or cancer.

The page contains the following sections:

1. Understanding breathlessness
2. What can I do when the person I am caring for is breathless?
3. What can I do to help reduce how often the person I care for is breathless?
4. What to expect in the future
5. When someone dies

Understanding breathlessness

To help support someone living with breathlessness, it's helps to first understand what breathlessness feels like and what causes it. 

The causes of breathlessness depend on what condition the person you are caring for has. 

Acute causes include the following:

• asthma – an acute attack may be triggered by a chest infection or hay fever
• COPD – symptoms are made worse by chest infections
• pneumonia (a severe chest infection)
• pneumothorax (a collapsed lung)
• pulmonary embolism (blood clot in your lung)
• pulmonary oedema (fluid inside your lungs)
• a heart problem such as heart attack or heart failure where your heart doesn’t pump properly
• anxiety.

Chronic causes include the following:

• COPD 
• asthma that is not well controlled
• other lung conditions like bronchiectasis
• heart failure – breathlessness and swollen ankles gradually worsen
• heart rhythm problems, such as atrial fibrillation – this means blood isn’t pumped around your body properly so breathing becomes more rapid to try and get more oxygen into your lungs
• anaemia (low iron levels in your blood) – this means there is not enough haemoglobin in your blood to transport sufficient oxygen around your body
• being obese or not very fit.

What does breathlessness feel like?

Try one of the following activities to find out what breathlessness can feel like:

• Take a deep breath in and then breathe out half way. Then breathe in again. Now breathe at that level for a few more breaths. 
• Take a deep breath in and hold it as long as you can. 

Imagine you had to go up some stairs breathing like that. This is what breathlessness can feel like. 

What can I do when the person I am caring for is breathless?

Not everyone wants help from carers when they are breathless. Sometimes, they just want to be given some space to get better on their own. Some people may find it useful if their carer says encouraging and reassuring things.

Tips for managing breathlessness

Here are some key steps you can do if someone you are taking care of is out of breath:

• Encourage recovery breathing by asking the person to find a comfortable position, then relax their shoulders and gently breathe out. They can also try breathing in from their stomach.
• Ask the person to work out what helps them to manage breathlessness by comparing the recent episode of breathlessness with the previous one. They can rate how breathless they felt on a scale of 0–10 (0 being not breathless at all and 10 being the worst breathlessness). 
• Agree on hand signs or signals with the person when they are not breathless so you can communicate with them when they are out of breath and can't speak. 
• Use a handheld fan to cool the person's face. Cool air can reduce breathlessness by calming down the patient. 
• Help them learn how to relax, as this can help prevent the breathlessness–anxiety loop. 
• Help them to use their inhaler when they are out of breath (if they have one). 
• Try acupressure, which involves stroking down either one of the person's arms all the way to the end of their thumb using the palm of your hand. Rubbing the top-middle of their back also helps. 

There are other strategies that are specific to conditions the person you are caring may have. Read more about understanding breathlessness in COPD and cancer. 

What can I do to help reduce how often the person I care for is breathless?

There are steps you can take to help reduce how often the person you care for is breathless.

Manage stress, panic and breathlessness

It is common for someone you are taking care of to feel upset and frightened when he or she is out of breath. As a carer, you may also feel the same. 

Breathlessness can be triggered by:

• certain activity such as getting washed or dressed
• hot or cold environment, aerosols or dust
• infections
• emotions such as feeling stressed or upset.  

Sometimes, there is no obvious trigger. 

If the person you are caring for is feeling stressed, that can worsen the breathlessness. The stress and breathlessness can feed each other in an unhelpful cycle. 

Stress is a normal feeling we all have from time to time. It is your body's response to threat with a combination of worrying thoughts, feelings and emotions plus a range of bodily changes such as tight muscles, rapid breathing and increased heart beat. 

As a carer, you can't take away the stress from people, but you can help by exploring ways to help manage stress levels. Read more about stress, panic and breathlessness and managing stress. 

Help them to keep active

Before starting any exercise programme, it is best to get advice from a healthcare provider who understands the condition of the person with breathlessness. Keeping active can help strengthen muscles and help manage daily activities, including helping them to boost recovery after infections. Being fit also improves heart and lung function, which helps to provide the body with the oxygen it needs.

You can help by encouraging the person with breathlessness to attend an exercise class designed for people living with the same condition. You can also try and help them to do some useful strengthening techniques, which can be helpful to do at home when it is hard to get out. 

Live a fulfilling life together

Living with breathlessness can be challenging, but it is possible for you and someone you care for to live a fulfilling life. There are lots of activities you can do together or things you can do separately. Both of you can support each other to make things enjoyable. Read more about living a fulfilling life.

Some of fun things you and the person you care for can do include:

• Tai Chi or yoga classes
• singing in a choir
• watching sports
• gentle walking groups. 

Talk to their healthcare provider to find out classes or events available around your area. Read about pulmonary rehabilitation for people with COPD.

Manage infections

Infection can be one of the triggers for breathlessness. Unfortunately, you can't stop infections from happening and some people get them more easily than others. Therefore it's important that you help the person you care for to keep an eye on the symptoms and signs of infection, so infections can be managed and treated in time.

Ways to help prevent or manage infections include to:

• be alert to changes in symptoms – don't just assume it's the illness getting worse
• ask the person's healthcare provider about a self-management plan and follow the plan when they are breathless (the plan will include what medication to take, who to contact if you are concerned and the next steps when they are out of breath)
• encourage the person you are caring for to attend a rehabilitation course – ask their healthcare provider about the courses available in your area
• bring in the person you are caring for to get his or her annual flu vaccination and pneumococcal vaccination
• both you and the person you care for wash your hands with hot water and soap or use hand gel often and avoid touching your eyes and nose
• eat a healthy diet with plenty of fresh fruits and vegetables
• keep active
• avoid visitors with coughs, colds or fever
• avoid breathing in smoke or places with smoke. 

Read more about managing infections. 

What to expect in the future

It can be difficult to think and talk about the future, but doing this helps you and the person you are caring for be better prepared. 

Talking about the future

Talking about the future helps the person with breathlessness and other family/whānau members and friends be better prepared for the future. However, having these conversations is not always easy. 

It is also useful to talk about having an advanced directive or advance care plan, which can help you decide what to do if someone you care for becomes unwell. Read more about talking about the future with others. 

Common changes if the person you care for get sicker

As the condition of the person you care for progresses, you may notice changes in their symptoms and that they can be more difficult to manage. They may also need more support as the condition worsens. 

Some of the common changes that you may notice include:

• more breathlessness
• loss of appetite and weight loss
• pain
• tiredness
• difficulty sleeping
• having frequent infections
• more flare-ups, wheezing, chest tightness, phlegm in COPD.

If you are unsure or having difficulties managing any symptoms of someone you care for, talk to their healthcare provider. Sometimes, it may be recommended that they have a respite stay. 

Ways to cope with these changes

It may be hard for you to see how things change and how someone you care for gets sicker on a daily basis. It is also common that you as a carer feel drained and upset about what has happened. At times like these, you need to look after your physical and mental wellbeing as the person you care for will require more support from you. 

Similarly, the person you care for will also struggle with difficult emotions and slowly withdraw from their daily life as the condition progresses. You can encourage them to talk through their feelings with you, other family members and friends, a trained counsellor or one of the healthcare team members. You can ask their healthcare provider for a referral to a trained professional. 

Accessing care and support

Knowing where and how to access care and support is important, especially when the condition or symptoms of the person you care for become more difficult to manage. 

It is common to have more than one healthcare professional taking care of them. Depending on the condition the person you care for has, some of the healthcare team members involved can include:

• a specialist doctor, eg, a respiratory specialist if your patient has COPD or a cancer specialist (oncologist) if the person you care for has cancer
• radiologist – a doctor who diagnoses diseases by using imaging such as x-ray, ultrasound scan or CT scan
• specialist nurse, practice nurses or district nurses
• surgeon – a doctor who performs surgery in the operating theatre
• GP
• physiotherapist
• occupational therapist
• psychologist
• palliative care team – the team consists of doctors, nurses, and other allied health professionals to help manage symptoms nearing the end of life that aims to keep patients as comfortable as possible. 

Talking to the healthcare team

Sometimes, it may feel challenging to talk to the healthcare team about the person you care for because:

• the needs of the person you care for have not been heard by the healthcare team
• you and the person you care for don't understand what the healthcare team is saying
• you and the person you care for don't want to ask too many questions
• you feel left out about your patient's care (you need to understand that there are things the healthcare team can't talk to you about regarding the person you care for without their permission).

However, to make sure they get the best possible care, you need to understand what the healthcare team is saying and you need to express your concerns and the needs of the person you are caring for. 

Here are some tips to help you talk to the healthcare team:

• Prepare a list of questions you or the person you care for may have and bring to their appointment.
• Ask questions – you need to understand what is happening and how you can help.
• Ask questions which are most important first.
• You may need to ask a question more than once to make sure you understand fully.
• You can keep a note or record the conversation during the appointment.
• If the person you care for is receiving palliative care, let all the healthcare professionals involved in their care know so everyone is aware of the type of support they need.

Read more about talking to the healthcare team. 

When someone dies

It can be a difficult time for you when the person you care for dies. You may find it hard to cope with and may experience grief and bereavement. 

Common emotions or feelings you may notice include:

• loneliness
• guilt
• shock or numbness
• anger
• fear
• longing
• sadness.

Some of the bodily changes you may also notice include:

• being tearful
• difficulty sleeping
• weight loss or weight gain
• loss of appetite or increased appetite
• tiredness
• lack of energy
• headaches. 

These feelings and bodily changes can come on early or later when all the practical matters such as organising a funeral have been done. 

You may find it helpful to talk things through to help you manage grief and bereavement. You can talk to your family/whānau, friends or relatives, people in a support group, or a trained professional such as a counsellor. 

There are many organisations in New Zealand that provide support, advice and counselling to help those affected by loss and grief, including:

National grief support groups Health Navigator, NZ
The Grief Centre The Auckland-based centre provides counselling, support groups and training in the Auckland region, and also has information and resources available on their website
Skylight NZ Offers grief counselling in some centres and also has information and resources available on their website.
Hospice NZ ph 04 381 0266
Helplines and local mental health services Mental Health Foundation, NZ

Talk to your doctor if you have difficulty coping with daily life and you are having these grief feelings longer than expected. Read more about when someone dies and about grief and loss.

References

1. Supporting someone with breathlessness Supporting Breathlessness, UK

Information for healthcare providers on breathlessness The content on this page will be of most use to clinicians, such as nurses, doctors, pharmacists, specialists and other healthcare providers.

The following information on dyspnoea is taken from Auckland Regional Health Pathways, NZ, accessed May 2020:

Red flags

• Acute dyspnoea developing over hours or days.
• Signs of severe respiratory distress, eg, unable to speak in sentences, altered level of consciousness.

Assessment

1. In at least 50% of patients, diagnosis is on history alone:
   • If acute dyspnoea, ie, developing over hours or days, consider causes that require acute assessment.
   • Look for any co‑existing broad causes of dyspnoea.
2. Complete cardio-respiratory examination, including oxygen saturation, for significant hypoxaemia.
3. Consider investigations to confirm or exclude specific disease, or if a cause is not evident from history and examination:
   • Spirometry testing with bronchodilator reversibility.
      ◊ Normal spirometry excludes clinically significant COPD as a cause of breathlessness, but does not exclude asthma because this is episodic.
      ◊ Bronchodilater reversibility does not differentiate between asthma and COPD. The greater the increase in FEV1 following bronchodilator, the greater the probability of asthma.
      ◊ Consider contraindications to spirometry testing.
   • Chest x-ray, particularly in older patients, and when referral is planned.
      ◊ May not be indicated for all younger patients.
      ◊ Features of hyper-inflation have poor sensitivity and specificity for the diagnosis of airways disease such as COPD (spirometry is the most appropriate diagnostic tool).
      ◊ Increased cardiothoracic ratio (CTR) must be interpreted in the clinical context. In patients with BMI > 30, CTR is often increased because of obesity, but the heart is actually normal.
   • Electrocardiogram looking for arrhythmia.
   • FBC to assess for anaemia and urea and electrolytes.
   • NT-proBNP, unless previous myocardial infarction.

Management

1. Arrange acute assessment by appropriate service according to severity and suspected underlying cause if:
   • acute dyspnoea developing over hours or days.
   • signs of severe respiratory distress e.g, unable to speak in sentences, altered level of consciousness.
2. Manage according to cause:
   • COPD
   • asthma
   • heart failure
   • lung cancer
   • anaemia
   • anxiety
   • arrhythmia including atrial fibrillation (AF)
   • heart murmurs
   • palpitations
   • community-acquired pneumonia
   • pulmonary vascular disease, eg, pulmonary embolism, pulmonary hypertension
   • thyroid disease
   • weight management
   • hyperventilation/disordered breathing.
3. Suggest strategies to relieve dyspnoea-associated distress:
   • Educate and reassure the patient and caregivers about the cause, and how to control the symptoms. Offer patient information – What To Do When Very Breathless.
   • Teach the patient specific strategies. It is best to teach techniques when patients are not actively short of breath, short of breath on exertion, or anxious. Measures include:
      ◊ activity pacing
      ◊ pursed lips breathing
      ◊ exhalation with effort
      ◊ forward-leaning position
      ◊ passive relaxation
      ◊ progressive muscle relaxation
      ◊ meditation
      ◊ visualisation
      ◊ walking aids.
   • Advise the patient to modify daily activities and expectations, and arrange support as appropriate.
   • Consider respiratory physiotherapy or, for patients with COPD, consider requesting pulmonary rehabilitation to improve function and stamina.
   • Cognitive behavioural therapy (CBT) can be used to reduce the patient's alarm response to the symptoms.
   • If dysfunctional breathing or hyperventilation suspected and investigations have excluded cardiorespiratory disease, consider requesting non-acute respiratory assessment, specifying Hyperventilation Clinic on the referral.
   • If dyspnoea is related to an incurable condition, see Dyspnoea in Palliative Care Pathway.
4. Consider nutritional assessment and support – chronically breathless patients are often cachexic and suffer generalised weakness.
5. If oxygen support is necessary, seek respiratory advice.

Clinical resources

COPD and Asthma fundamentals training programme Asthma and Respiratory Foundation, NZ
Remote assessment of breathlessness Goodfellow Gems, NZ
Managing breathlessness in palliative care BPAC, NZ
Breathlessness Patient Info, UK
Breathlessness Marie Curie, UK
Supporting someone with breathlessness Supporting Breathlessness, UK

Regional HealthPathways NZ

Access to the following regional pathways is localised for each region and access is limited to health providers. If you do not know the login details, contact your DHB or PHO for more information:

• Northland
• Auckland Region
• Midland Region
• Hawke’s Bay
• Whanganui & MidCentral
• Wairarapa, Hutt Valley, Capital and Coast (3D)
• Nelson-Marlborough
• West Coast
• Canterbury
• Aoraki (South Canterbury)
• Southern