Shortness of breath is a frightening experience

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Dyspnoea (shortness of breath) is one of the most distressing symptoms at the end of life. It occurs in most people diagnosed with chronic obstructive pulmonary disease (COPD), lung cancer, or heart failure.


Definition

Dyspnoea is a subjective experience of difficulty breathing. It is frightening and people experiencing it may say that they feel they are suffocating, short of breath, unable to get a breath, or drowning.

Dyspnoea may be referred to as breathlessness or shortness of breath.


What you can do?

Nurses have an important role in recognising, assessing, and managing symptoms related to dyspnoea. They can also help patients and families with sensitive and culturally appropriate education and support.


People with dyspnoea describe their experience in a number of ways, for example:

  • 'Like suffocating'
  • 'Tightening feeling of fear in my chest and mind'
  • 'Like I am going to take my last breath'
  • 'Feels like I am not going to breathe again'
  • 'Could not get enough air in'.

Dyspnoea is a debilitating symptom with significant negative affect on a person’s quality of life:

  • physical – inefficient breathing, increased respiratory rate, difficulty moving, speaking, or eating, reduced function
  • social – reduced social interactions, loneliness
  • psychological – fear of not being able to breathe, low moods, depression, anxiety
  • spiritual – seeking meaning and purpose to life as they are more disabled.

These factors should be included in comprehensive assessment and management of dyspnoea. When combined they can further worsen breathlessness. For example, a person’s fear of no longer being able to breathe can fuel increased breathlessness through their anxiety. A person’s progressive deconditioning from inactivity, perhaps from avoiding exercise to avoid breathlessness and/or anxiety, can lead to increased breathlessness with movement.

It is important to identify reversible (treatable) factors contributing to dyspnoea and to manage them. These include bronchospasm, infection, heart failure, pleural effusion, pulmonary embolism, anaemia, and large airway obstruction. Active treatment of these may be appropriate.

Dyspnoea can be managed while the cause(s) are being investigated.


Assessment should include physical, social, psychological, and spiritual factors.


Observe the person’s posture - trying to sit upright leaning forward with shoulders hunched up or leaning against something suggests the person is working hard to breathe.


Listening to the person’s experience of breathlessness can provide clues to triggers or predominant vicious cycle which can be addressed as a priority.


Tailor the assessment to the person’s ability to tolerate the assessment. Ask open-ended questions if you think that the person can answer them. If the dyspnoea is or becomes acute, use closed questions which can be answered with one word, a nod or a shake of the head. A family member or carer may provide more detail.


Asking the person about their breathing difficulties and how it is affecting them (physical, social, psychological, spiritual, function) is the best approach. As appropriate ask open questions such as:

  • 'What makes you breathless?'
  • 'What helps your breathlessness?'
  • 'What happens when you feel breathless?' (e.g. How does it come on? How do you try to improve it? How long before you feel better? What makes it better/worse? Are you taking any medications to help it?)'
  • 'What do you think is causing your breathlessness?'
  • 'Despite the breathlessness, what can you still do?'
  • 'What have you stopped/reduced doing to prevent you getting breathless?'
  • 'What would you like to be able to do or to do more easily?'
  • 'What is the worst thing for you at the moment?'

Or closed questions:

  • 'Are you short of breath?'
  • 'Do you have allergies?'
  • 'Do you have pain when you breathe?'
  • 'Do you have a cough?'


Nurses might ask the carer:

  • 'What do you think is causing the breathlessness?'
  • 'What is the worst thing for you at the moment?'

Consider use of tools such as

The aim of care is to reduce the effect of breathlessness on the person’s life including activities of daily living and to improve their quality of life. Dyspnoea is a complex symptom. Its treatment often requires a multidisciplinary approach and a combination of non-pharmacological measures, and medicines (pharmacological measures). Chronic or distressing dyspnoea can serve as a trigger for referral to palliative care services.


Acknowledge the distress of the person, their family, and carers. Asking what concerns them most can help identify the priorities of care.


Assist the person and their family and carer(s) to manage dyspnoea so that they feel more in control, can best manage activities, and know what to do in acute episodes of dyspnoea.


Non-pharmacological management

Non-pharmacological strategies that can help depending on the context include:

  • encouraging the person to listen to their own body. Physiotherapists and occupational therapists can show the person, carers, family, and care staff ways that the person can conserve energy, pace themself and use relaxation techniques and equipment to optimise function, quality of life and independence.
  • planning care and other activities – this may also include good control of pain and anxiety, preparing any equipment used for care, and the use of equipment to reduce the person’s effort
  • encouraging the person to prioritise activities that are most important to them
  • the presence of someone who can calm and reassure the person
  • hand-held fan which stimulates the nerves in the face and eases the feeling of breathlessness
  • optimising air circulation around the person e.g. a fan or open window
  • breathing-control techniques e.g. pursed-lip breathing, breathing around the rectangle and positioning
  • upright positions:
    • supported sitting
    • leaning on a supportive table
    • lying in a reclining chair or electric bed with backrest and knee break.
  • relaxation exercises
  • identifying triggers and ways to mitigate them
  • providing information of when and how to seek additional help from GP, community nurse or ED.

Pharmacological management

Opioids are the first line pharmacological management for dyspnoea in people with advanced disease or cancer. If they are used, monitor for any side effects such as drowsiness, constipation or nausea, vomiting. The medication may need to be adjusted to find the balance between person’s preferences around drowsiness/alertness and the severity of dyspnoea.


Oxygen therapy may be used if the person is hypoxic and a therapeutic trial indicates that oxygen therapy is beneficial.

Allied health professionals who can help

Occupational therapists can help with breathlessness through assessment, education, counselling, task redesign and equipment prescription.

Physiotherapists can help with breathlessness through breathing exercises, secretion clearance techniques, pacing and positioning, relaxation techniques, and use of handheld fans.

This information was drawn from the following resources:

 

  1. Abernethy AP, Wheeler JL. Total dyspnoea. Curr Opin Support Palliat Care. 2008 Jun;2(2):110-3. doi: 10.1097/SPC.0b013e328300cad0.
  2. Booth S, Johnson MJ. Improving the quality of life of people with advanced respiratory disease and severe breathlessness. Breathe (Sheff). 2019 Sep;15(3):198-215. doi: 10.1183/20734735.0200-2019.
  3. Brighton LJ, Miller S, Farquhar M, Booth S, Yi D, Gao W, et al. Holistic services for people with advanced disease and chronic breathlessness: a systematic review and meta-analysis. Thorax. 2019 Mar;74(3):270-281. doi: 10.1136/thoraxjnl-2018-211589. Epub 2018 Nov 29.
  4. Donesky D. Dyspnea, cough, and terminal secretions. In: Ferrell BR, Paice JA, editors. Oxford textbook of palliative nursing [Internet]. Oxford: Oxford University Press. 2019. [cited 2022 Aug 11].
  5. NHS inform. Shortness of breath [Internet]. 2022 [updated 2022 Nov 1; cited 2022 Nov 16].
  6. Therapeutic Guidelines Limited. Respiratory symptoms in palliative care [Internet]. 2016 [cited 2022 Nov 16].
  7. Respiratory symptoms. In: Watson M, Ward S, Vallath N, Wells J, Campbell R, editors. Oxford handbook of palliative care [Internet]. Oxford: Oxford University Press; 2019. [cited 2022 Aug 11].

Page updated 26 April 2023