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Dyspnoea in palliative care

Key points

  • Dyspnoea (breathlessness) is a distressing symptom that may affect all elements of an individual’s life.
  • It is subjective.
  • A multidisciplinary, tailored approach is necessary when developing a management plan for breathlessness.
  • Patients at risk of developing dyspnoea should be identified, as anticipatory prescribing, education and support may be indicated.
  • The stage of a patient’s illness, their prognosis and their goals should be considered.

What is dyspnoea?

Assessment

Causes & management

What is dyspnoea?

Dyspnoea is a term used to describe a subjective experience of difficult and uncomfortable breathing. [1] The American Thoracic Society defines breathlessness as:

"…a subjective experience of breathing discomfort that consists of qualitatively distinct sensations that vary in intensity. The experience derives from multiple physiological, psychological, social, and environmental factors, and may induce secondary physiological and behavioural responses.” [2]

The terms dyspnoea and breathlessness may be used interchangeably.

Dyspnoea is a prevalent symptom in advanced lung cancer, chronic obstructive pulmonary disease and other advanced diseases. It may cause severe distress and isolation for patients and their families. [3]

The pathophysiology of dyspnoea is complicated and is not fully understood. Dyspnoea results from a complex signalling process between the central nervous system, upper airways, lungs and chest wall. Signals are relayed to higher centres of the brain where they undergo further processing with an influence of behavioural, cognitive, social and environmental factors. The final result of this process is the sensation of dyspnoea. [4]

The term “total dyspnoea” characterises the multidimensional nature of the symptom and the physical, psychological, social, and spiritual impact on the person. [5] The experience of “total dyspnoea” exists as a conceptual framework much like that of “total pain”, a term coined by Dame Cicely Saunders in 1967. [6]

Assessment

A comprehensive assessment is required to determine which intervention may be effective. It involves discussion and documentation of the underlying pathology and the individual’s experience.

1) Underlying pathology
The following may assist in defining the underlying pathology:

  • past & recent history
  • physical examination
  • clinically appropriate investigations depending on the stage of the disease and the prognosis
  • evaluating the patient’s response to previous interventions.[7]

2) Individual’s experience of breathlessness

Quality
Ask the patient to describe their breathlessness in their own words.
e.g. “I feel out of breath” “I can’t breathe in deeply” “I feel like I am suffocating”

Onset
It is important to ascertain if the onset of dyspnoea has been acute or is it a chronic, ongoing symptom. This can help to determine underlying pathology. For example:

a) Sudden onset might be suggestive of an acute cause e.g. pulmonary embolus.
b) Onset with other associated symptoms e.g. onset of dyspnoea with stridor, facial swelling and/or distension of upper body veins may indicate superior vena caval obstruction.

Severity
Visual analogue scales or the Numerical Rating Scale [8] are often used to rate the severity of dyspnoea e.g. on a scale of 0-10 (0 = not breathless & 10= worst imaginable breathlessness), how does the person rate their breathing sensation over the past 24 hrs?
It is important to note that a patient may rate the intensity of their breathlessness greater than the severity of their disease. In some cases individuals are unable to separate the physical sensation from their emotional response to it. [3]

Worsening & relieving factors
Ask the individual to explain what makes their dyspnoea worse/better e.g. walking, anxiety, panic [7]

Impact on personal well-being
Encourage the patient to talk about the meaning of their breathlessness. This might include a discussion about how they believe their breathlessness will affect them in the future. It may be helpful to think about this in terms of their physical, psychological, and social well-being.

Impact on level of function
Ask the patient how the dyspnoea is affecting their ability to perform their activities of daily living. This may be measured using the Australia-modified Karnofsky Performance Status (AKPS) scale. [9]

Because breathlessness can be distressing for families and caregivers, it is important to include their experience as part of the assessment.

Causes & management

The most appropriate treatment for breathlessness will depend on the cause. A tailored management plan, inclusive of the patient, should be developed to avoid unnecessary hospitalisations and futile treatments at the end of life. [16]

Dyspnoea is best managed by ensuring a systematic, evidence-based approach from a multidisciplinary perspective. Interventions for dyspnoea are influenced by prognosis, the severity of the dyspnoea, and individual needs and goals of care. [2]

The goals of dyspnoea management in palliative care include:

  • improving breathing efficiency
  • maximising comfort
  • reducing anxiety [13]

The goals may be achieved using a combination of pharmacological and non-pharmacological interventions. Table 1 outlines some common causes of dyspnoea and possible pharmacological/procedural interventions whilst Table 2 details the non-pharmacological approaches to dyspnoea management.

Table 1

Common causes

Possible pharmacological/procedural interventions

Acute airway obstruction

 
  • Steroids may reduce inflammation and reduce distressing symptoms [7]
  • Radiotherapy may reduce tumour mass and alleviate symptoms [7]
  • Stenting may be beneficial, if prognosis not poor [7]
  • Sedation & analgesia (parenteral administration) are appropriate if obstruction is a terminal event and not reversible [7]

Airways inflammation e.g. infections
  • Antibiotics may be used if appropriate, to treat infections. They may significantly reduce breathlessness. [7]

Anxiety/panic
  • Benzodiazepines are quick acting and may be useful in crisis situations. [7,10]

Superior vena caval obstruction
  • Morphine may relieve distressing symptoms of headache and dyspnoea [7]
  • Steroids may reduce the associated inflammatory oedema & may improve distressing symptoms [7]
  • Radiotherapy can be very beneficial in reducing tumour mass, thus improving symptoms [7]

Anaemia

 
  • Blood transfusions may be useful to boost haemoglobin levels and reducing breathlessness. NB this intervention may become less appropriate/effective with disease progression

Malignant pleural effusion
  • Excess fluid accumulation causing dyspnoea may be drained (if appropriate) via a procedure such as thoracocentesis. [7]

Respiratory tract secretions (indicates dying phase)
  • Anti-cholinergic agents e.g Glycopyrrolate may reduce oral secretions. [7]
  • Ceasing fluid support may reduce possible fluid overload. [10]

Important note re oxygen therapy as a pharmacological intervention for dyspnoea. There remains little evidence to support the use of oxygen in the management of dyspnoea in non-hypoxic patients. [16]

A recent international, multicentre, randomised control study assessed the extended use (≥15 hours/day) of oxygen versus room air for palliative care patients with intractable dyspnoea. This study showed that both oxygen and air had a symptomatic benefit when used at 2 litres/min via nasal prongs (≥15 hours/day) [11]

 

Table 2

Possible non-pharmacological/procedural interventions

Key points to improving breathing efficiency and reducing anxiety through non-pharmacological interventions.

Adapted from [12,13,14]

Improving breathing efficiency

  • work with the individual at a slow and steady pace, using a matching tone of voice
  • ensure the individual is positioned in a way that is appropriate & comfortable for them whilst also increasing the efficiency of the diaphragm
  • teach the individual the lower chest breathing technique. This involves abdominal muscles as well as diaphragm muscle. The result is a deeper breathing that ensures maximum use of lung capacity.
  • slow the rhythm of the breathing
  • implement activity pacing. This will empower the patient to be in control of their activities and their rest periods, enabling them to find a balance between the two.
  • implement tailored relaxation strategies including:
    • taped relaxation scripts
    • progressive muscle relaxation
    • distraction techniques e.g music, reading.
    • develop a self-management plan with the patient using appropriate non-pharmacological interventions [15]

Reducing anxiety

  • Increase air movement through use of a hand-held or table-top fan directed at the face and nose. This may reduce the sensation of breathlessness. [10,11,18]
  • Cool the room temperature as this may also alter the sensation of breathlessness. [10]
  • Consider referral for psychotherapy

 

 

REFERENCES

1. Kvale, P.A., Simoff, M., Prakash, U.B.S. (2003). Palliative Care. Chest. 123: 264–311.

2. American Thoracic Society. (1999). Dyspnea: mechanisms, assessment, and management: a consensus statement. Am J Respir Crit Care Med. 159: 321–340.

3. Booth, S., Moosavi, S.H., Higginson, I. (2008). The etiology and management of intractable breathlessness in patients with advanced cancer: a systematic review of pharmacological therapy. Nature Clinical Practice, Oncology. 5(2):90-100.

4. Dorman S, Jolley C, Abernethy A, Currow D, Johnson M, Farquhar M, et al. Researching breathlessness in palliative care: consensus statement of the National Cancer Research Institute Palliative Care Breathlessness Subgroup. Palliative Medicine. 2009;23(3):213.

5. Abernethy, A.P., Wheeler, J.L. (2008). Total dyspnoea. Curr Opin Support Palliat Care.2:110–3.

6. Saunders, C. (1967). The Management of Terminal Illness. Edward Arnold, London.

7. Palliative Care Expert Group. (2010). Respiratory symptoms. In: Therapeutic guidelines: palliative care. Version 3. Melbourne: Therapeutic Guidelines Limited.

8. Gift, A.G., Narsavage, G. (1998). Validity of the numeric rating scale as a measure of dyspnea. Am J Crit Care. 7:200–204.

9. Abernethy, A., Shelby-James, T., Fazekasm B., Woods, D., Currow, D. (2005). The Australia-modified Karnofsky Performance Status (AKPS) scale: a revised scale for contemporary palliative care clinical practice. BMC Palliative Care, 4(7). Retrieved September 15, 2010, from http://www.biomedcentral.com/1472-684X/4/7

10. National Comprehensive Cancer Network. (2010). NCCN Practice Guidelines in Oncology: Palliative Care. Retrieved November 11, 2010, from http://www.nccn.org/professionals/physician_gls/f_guidelines.asp

11. Wilcock, A., Booth, S., Wheeler, J.L., Tulsky, J.A., Crockett, A.J., Currow, D.C. (2010). Effect of palliative oxygen versus room air in relief of breathlessness in patients with refractory dyspnoea: a double-blind, randomised controlled trial. Lancet. 376 (9743): 784-93.

12. Macmillan Coping with shortness of breath: http://www.cks.nhs.uk/media/macmillan/coping.pdf

13. Macmillan Living with breathlessness: http://www.cks.nhs.uk/media/macmillan/living.pdf

14. Macmillan Managing breathlessness: http://www.cks.nhs.uk/media/macmillan/managing.pdf

15. Sedeno MF, Nault D, Hamd DH, Bourbeau J. A self-management education program including an action plan for acute COPD exacerbations. COPD. 2009;6(5):352-8.

16. Currow DC, Ward AM and Abernethy AP. Advances in the pharmacological management of breathlessness. Current Opinion in Supportive and Palliative Care. 2009;3(2):103.

17. Mularski RA, Munjas BA, Lorenz KA, Sun S, Robertson SJ, Schmelzer W, et al. Randomized Controlled Trial of Mindfulness-Based Therapy for Dyspnea in Chronic Obstructive Lung Disease. J Altern Complement Med. 2009;15(10):1083-90.

18. Bausewein, C., Booth, S., Gysels, M., Kühnbach, R., Higginson, I.J. (2010) Effectiveness of a hand-held fan for breathlessness: a randomised phase II trial. BMC Palliative Care. 9:22. Retrieved November 24, 2010, from http://www.biomedcentral.com/1472-684X/9/22