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Chronic obstructive pulmonary disease - Management
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    • Can be withdrawn if the person retains (or regains) capacity.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    • It has not been withdrawn.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.

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