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Chronic obstructive pulmonary disease - Management
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How do I know a person has end-stage COPD?
- There is no established definition of end-stage chronic obstructive pulmonary disease (COPD). Clinical judgement is needed.
- End-stage COPD may be defined as COPD which is very severe (forced expiratory volume in 1 second [FEV1] less than 30% predicted), unresponsive to usual medical treatment for COPD, and associated with a probable life expectancy of less than 6–12 months. Assessing life expectancy is not straightforward — see Discussing end-of-life issues for details on factors that may be associated with survival of 6 months or less.
- For people with end-stage COPD, the focus is on palliative care to relieve distressing symptoms. This is distinct from but similar to terminal care, which is care given during the last days of life.
- A trigger for palliative care may be if the answer to the 'surprise' question is 'no': 'Would you be surprised if this person were to die in the next 6–12 months?'
Basis for recommendation
- In its clinical guideline on the management of chronic obstructive pulmonary disease (COPD), the National Institute for Health and Clinical Excellence (NICE) does not give an explicit definition of end-stage COPD [National Clinical Guideline Centre, 2010; NICE, 2010]. The definition of end-stage COPD given here is based on:
- Expert opinion from review articles in relation to severity of airflow obstruction and probable life expectancy of less than 6–12 months [Barnett, 2008; Halpin et al, 2008]
- NICE recommendations that palliative drug treatments should be offered when the person is unresponsive to usual medical treatments.
- The 'surprise' question is recommended in Prognostic Indicator Guidance from the Gold Standards Framework and the Royal College of General Practitioners [RCGP, 2008].
What are the general principles of managing people with end-stage COPD?
- Optimize medical treatment of chronic obstructive pulmonary disease (COPD) — see Scenario: Stable COPD.
- Establish a clear management plan based on the wishes of the person with COPD (and if appropriate their family or carers).
- Determine whether hospital admission for severe exacerbations is appropriate.
- Start to coordinate care with a respiratory nurse specialist, district nurse, palliative care specialist nurse, and social services.
- Consider admission to a hospice (for example if symptoms are not controlled or if this is the preferred place of death).
- Discuss any advance decisions.
- Consider using a management pathway for the terminal phase, such as the Liverpool Care Pathway (which offers a framework for caring for people at the end of life). For further information, see www.mcpcil.org.uk/liverpool-care-pathway.
- Advise simple measures and offer drug treatments (including oxygen) for breathlessness. See the CKS topic on Palliative cancer care - dyspnoea.
- Manage cough, secretions, pain, fatigue, insomnia, depression, and anxiety — see the CKS topics on:
- For more information, see the CKS topics on Palliative cancer care - general issues.
Basis for recommendation
When and how should I discuss end-of-life issues for people with end-stage COPD?
- Deciding when and how to initiate discussions about end-of-life issues is difficult. Evidence is insufficient to make firm recommendations, but the following may be helpful:
- Most people with chronic obstructive pulmonary disease (COPD) would find such discussions acceptable; if initiated by the clinician, ideally the discussions should occur when the person is stable rather than deteriorating or being hospitalized.
- No criteria have been shown to effectively predict survival of 6 months or less. However, several features may indicate the need to discuss end-of-life issues:
- Forced expiratory volume in 1 second (FEV1) less than 30% predicted.
- Frequent exacerbations and hospital admissions.
- Low body mass index or weight loss.
- Comorbidities (especially left heart failure).
- Some evidence indicates that people with advanced COPD may wish to discuss:
- Diagnosis and the disease process (including what COPD is and what causes it) — see Background information.
- Treatments (including explanations of both long-term treatments, such as inhalers and oxygen, and short-term crisis treatments, such as intubation and mechanical ventilation).
- Prognosis.
- What dying might be like and how distressing symptoms might be alleviated.
- Advance decisions (for example whether or not to treat or hospitalize for an exacerbation, or whether to have life-support measures).
- Discuss with the person whether to complete a DS1500 form so they can receive a disability living allowance. For more information, see www.dwp.gov.uk.
Basis for recommendation
Difficulty deciding when and how to initiate discussions
Acceptability and when to initiate
- In one qualitative study identified in the NICE guideline [National Clinical Guideline Centre, 2010], a descriptive questionnaire was used to assess the attitudes of 105 people on a pulmonary rehabilitation programme to end-of-life decision making. Most people wanted to learn more about advance directives, mechanical ventilation, and intubation. They said they would find discussions with physicians about these issues acceptable, but such discussions should take place when the person was in a stable condition. Although only half thought physicians should initiate such discussions, only 20 people had had such discussions, almost all of which had been initiated by the patient and not the physician.
Criteria indicating the need to discuss end-of-life issues
- In a systematic review of tools and predictor variables to help clinicians estimate survival and appropriate timing of palliative care for older adults with non-malignant life-threatening disease, low forced expiratory volume in 1 second (FEV1) was the only variable that can be measured in primary care that was found to be effective in estimating survival [Coventry et al, 2005]. A review article also considered the evidence for commonly used prognostic criteria, finding them to be unreliable [Spathis and Booth, 2008]. However, given that decisions about the timing of end-of-life discussions still need to be made, the criteria presented are based on prognostic factors each recommended in more than one review article [Seamark et al, 2007; Barnett, 2008; Curtis, 2008; Halpin et al, 2008; Spathis and Booth, 2008].
- The Prognostic Indicators Guidance paper from the Gold Standards Framework and the Royal College of General Practitioners suggests indicators for survival of 12 months or less in people with COPD [RCGP, 2008]. The paper references the full 2004 NICE guideline [National Collaborating Centre for Chronic Conditions, 2004]; however, CKS could not locate in the NICE guideline the source of these proposed indicators.
What end-of-life issues to discuss
DS1500 form for disability living allowance
- This recommendation is based on what CKS considers to be good clinical practice.
What do I need to know about advance decisions for people with end-stage COPD?
- The usefulness of advance decisions in chronic obstructive pulmonary disease may be limited because:
- It is rarely feasible to give precise instructions for all potential eventualities.
- The person's views and values may change over time in response to the increasing severity of disease or during an exacerbation.
- Advance decisions (also called advance directives or living wills):
- Allow the person to specify (before they have lost the capacity to decide) what treatments they would not want and would not consent to (for example mechanical ventilation or cardiopulmonary resuscitation).
- Cannot demand treatments.
- Must be respected by clinicians.
- Can be withdrawn if the person retains (or regains) capacity.
- Can be made verbally, except for decisions that refuse life-sustaining treatment (such as artificial ventilation), which must be written, signed, and witnessed.
- Cannot refuse basic care, such as the provision of warmth, shelter, hygiene, food for eating, and water for drinking. However, clinically assisted nutrition and hydration (that is given intravenously, subcutaneously, or via a gastrostomy), which are considered in law to be medical treatments, can be refused.
- Clinicians are responsible for finding out if a valid advance decision exists.
- An advance refusal of treatment is binding if:
- The person making the advance decision was at least 18 years of age, and had the necessary mental capacity.
- It specifies treatment to be refused, and the applicable circumstances.
- It has not been withdrawn.
- Nobody has subsequently been given power of attorney to make treatment decisions on the person's behalf.
- The person making the advance decision has not subsequently given reason to believe that they have changed their mind.
- The legal framework for advance decisions is provided by the Mental Capacity Act 2005, which also provides for resolution of disputes and disagreements about advance decisions. For further information, see the section on The Mental Capacity Act 2005 in the CKS topic on Dementia.
- See the section on Important communication issues in the CKS topic on Palliative cancer care - general issues for further information on advance care planning.
Basis for recommendation
This information is based on guidance from the General Medical Council, Treatment and care towards the end of life: good practice in decision making [GMC, 2010]; guidance on the Mental Capacity Act from government departments and the British Medical Association [Office of the Public Guardian, 2005; BMA, 2007; Department for Constitutional Affairs, 2007; BMA, 2008; BMA, 2009]; and review articles [Curtis, 2008; Halpin et al, 2008; Nicholson et al, 2008; Spathis and Booth, 2008].
- The statements in relation to the usefulness of advance decisions in chronic obstructive pulmonary disease may be limited are based on expert opinion in review articles [Halpin et al, 2008; Spathis and Booth, 2008] and from CKS reviewers.
What simple measures can I advise to manage breathlessness for people with end-stage COPD?
- Advise the person on the following simple measures to manage breathlessness.
- Sitting in front of a fan or open window (or using a hand-held fan).
- Positioning
- For example, advise the person to sit or stand leaning forward (for example onto a table or the back of a chair) and supporting their weight with their arms and upper body.
- Pursed-lip breathing
- Advise the person to inhale through the nose and then exhale slowly, for 4–6 seconds, through pursed lips.
- Other simple measures, not specific to chronic obstructive pulmonary disease (COPD) but recommended in the section on Simple measures to help dyspnoea in the CKS topic on Palliative cancer care - dyspnoea, may be useful for people with COPD.
Basis for recommendation
What drug treatments (including oxygen) can I use in people with end-stage COPD?
- Offer an opioid as first-line treatment to palliate breathlessness in people with end-stage chronic obstructive pulmonary disease (COPD) that is unresponsive to other medical treatment.
- There is wide variation in the regimens used in trials and recommended in the literature. Seek specialist advice, or follow recommendations in the section on Opioids in the CKS topic on Palliative cancer care - dyspnoea.
- If an opioid (in addition to other medical treatment) is insufficient to palliate breathlessness, offer a trial of either or both of the following:
- Benzodiazepines (particularly if there is a significant anxiety component).
- Oxygen (if the person is not already on long-term oxygen).
- Short-burst oxygen therapy (intermittent use of supplemental oxygen for periods of 10–20 minutes) may be helpful.
- Use a 24% or 28% Venturi mask at a flow rate of 2–4 L/min.
- Seek specialist advice if these measures fail to palliative breathlessness sufficiently, or if considering a trial of tricyclic antidepressants or antipsychotics.
Basis for recommendation
When to treat
- The recommendation to offer opioids, benzodiazepines, and oxygen to people with end-stage chronic obstructive pulmonary disease (COPD) that is unresponsive to other medical therapy is based on the National Institute for Health and Clinical Excellence (NICE) clinical guideline Management of chronic obstructive pulmonary disease in adults in primary and secondary care (partial update) [National Clinical Guideline Centre, 2010; NICE, 2010].
Opioids
- NICE [National Clinical Guideline Centre, 2010] identified one systematic review and meta-analysis of opioids for the palliation of breathlessness in terminal illness [Jennings et al, 2002]. Not all studies were of people with COPD, and most had methodological limitations, including small sample size and the potential for carry-over effects (in crossover trials). A statistically significant effect of opioids was demonstrated for breathlessness using non-nebulized opioids; however, when a subgroup analysis of nine COPD studies was done, no statistically significant difference between the treatment and control groups was found for breathlessness. In spite of this, the NICE guideline development group concluded that opioids are useful for palliating breathlessness in people in the end stages of COPD.
- Most review articles and textbooks recommend the use of morphine, but there was considerable variation in the starting dosage between trials and that recommended in review articles and textbooks (from 1 mg daily to 30 mg daily) [Jennings et al, 2002; Seamark et al, 2007; Abernethy et al, 2009; Rocker et al, 2009; Regnard and Dean, 2010]. Consequently, firm recommendations cannot be made; CKS recommends that specialist advice be sought or that regimens recommended in the CKS topic on Palliative cancer care - dyspnoea be used.
Benzodiazepines
- A recent Cochrane systematic review included three randomized controlled trials with 47 people with COPD in its meta-analysis [Simon et al, 2010]. No statistically significant effect was observed for benzodiazepines compared with control. The authors recommend a trial of benzodiazepines only in people who have not responded to opioids and non-pharmacological measures.
- Benzodiazepines were recommended by NICE on the basis of the expert opinion of the guideline development group [National Clinical Guideline Centre, 2010].
- Because few review articles or textbooks make suggestions on the choice and dosage of benzodiazepine specifically for people with end-stage COPD, CKS recommends that specialist advice should be sought or that regimens recommended in the CKS topic on Palliative cancer care - dyspnoea are used.
Oxygen
- Oxygen is recommended by NICE for the palliation of breathlessness not relieved by other therapies; this recommendation is based on the expert opinion of the guideline development group [National Clinical Guideline Centre, 2010].
- The recommendation to use short-burst oxygen is based on a report of the expert working group of the Scientific Committee of the Association of Palliative Medicine [Booth et al, 2004].
- The recommendation on the dose of oxygen is based on recommendations by the British Thoracic Society [British Thoracic Society, 2006] and a report of the expert working group of the Scientific Committee of the Association of Palliative Medicine [Booth et al, 2004].
Tricyclic antidepressants and major tranquilizers
- Although NICE also recommends (on the basis of the expert opinion of the guideline development group) the use of tricyclic antidepressants and major tranquilizers (antipsychotics), CKS could find no other expert opinion in favour of these drugs, or on recommended regimens. Consequently, CKS recommends that specialist advice should be sought if these drugs are being considered.
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