Managing chronic diseases

Editor—In advanced, non-malignant, chronic illness, the proximity of death and the inadequacy of treatment to prevent it change the patient's circumstances. Accurate prognosis may be impossible and that also influences the circumstances. Although doctor and patient may know death is approaching, planning is needed for a stage of life that could continue for a year or more. For example, two year survival in patients with advanced chronic obstructive pulmonary disease is 50-64%.¹,² Murray et al warn against a paralysis of clinical decision making, but the inaccuracy of prognosis in these diseases presents complex challenges.³

Planning for death in advanced chronic disease may seem pessimistic when life still holds rich possibilities. Murray et al seem to use the term end of life as a euphemism for death.³ But the context of their editorial demands a broader understanding. Approaching the end of life has implications distinct from imminent death. These include the need to consider symptom management in preference to disease control, information about advanced disease, advance directives, and choice about place of care. These subjects are the business of palliative care but they need development in advanced disease without entailing for patient and carers the perceived finality of palliative and hospice care.

Much has been learnt about the attributes of a good death.⁴ This learning should be extended to that stage in advanced disease that precedes dying. The seven promises that Lynn et al propose should characterise care at the end of life and provide a suitable template for the end of life before death becomes imminent.⁵ In the development of our understanding about the end of life in chronic disease we must learn from patients about their needs and how they should be met. These are likely to include talking about the end of life without necessarily preparing for imminent death.