Palliative care of chronic illness: end of life is more than death
Murray et al draw welcome attention to the need to address the end of life in the care of people with advanced non-malignant chronic illness.(1) In advanced non-malignant chronic illness the proximity of death and the likely inadequacy of treatment to prevent it change the circumstances of the illness significantly. However accurate prognosis may be impossible and that also changes the circumstances. Although the doctor may know that death is approaching (and the patient may know so too) the circumstances demand planning for a stage of life that may continue for a year or more. In heart failure for example, even with a high B-type natriuretic peptide result (see report in the same issue of the BMJ), patients cannot be given a prognosis of less than two years with adequate reliability.(2) Two year survival in COPD patients with severe disease is between 50 and 64%.(3;4) Murray et al are right to warn against a paralysis of clinical decision making, but the inaccuracy of prognosis in these diseases presents complex challenges.
Planning specifically for death in advanced chronic disease may seem rather a rather limited approach when rich possibilities still remain for the patient. Murray and colleagues appear to be using the term end of life as a euphemism for death, as it is widely used throughout medicine. But the context of their editorial demands a broader and deeper understanding of this term. Approaching the end of life has implications that may be distinct from the implications of imminent death. These include the need to consider symptom management in preference to disease control, information about the advanced stage of the disease, advance directives, and choice about place of care. These subjects are the business of palliative care but they need to be extended back into the care of advanced disease without entailing for the patient and the patient’s family the perceived finality of palliative and hospice care.
Much has been learnt about the attributes of a good death and this learning should be extended to that stage in advanced disease that precedes dying.(5) Lynn and colleagaues in Washington have proposed seven promises that should characterise care at the end of life.(6) These promises provide a suitable template for the end of life at the stage before death becomes imminent. In the research and development of our understanding about the end of life in advanced chronic disease it is now essential to learn from patients what their needs are and how they should be met. These needs are likely to including talking about the end of life without necessarily preparing for imminent death.
(1) Murray SA, Boyd K, Sheikh A. Palliative care in chronic illness. BMJ 2005 Mar 19;330(7492):611-2.
(2) Doust JA, Pietrzak E, Dobson A, Glasziou P. How well does B-type natriuretic peptide predict death and cardiac events in patients with heart failure: systematic review. BMJ 2005 Mar 19;330(7492):625.
(3) Connors-AF J, Dawson NV, Thomas C, Harrell-FE J, Desbiens N, Fulkerson WJ, et al. Outcomes following acute exacerbation of severe chronic obstructive lung disease. The SUPPORT investigators (Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments). Am J Respir Crit Care Med 1996 Oct;154(4 Pt 1):959-67.
(4) Almagro P, Calbo E, Ochoa de EA, Barreiro B, Quintana S, Heredia JL, et al. Mortality after hospitalization for COPD. Chest 2002 May;121(5):1441-8.
(5) Steinhauser KE, Clipp EC, McNeilly M, Christakis NA, McIntyre LM, Tulsky JA. In search of a Good Death: Observations of Patients, Families, and Providers. Annals of Internal Medicine 2002;132(10):825-32.
(6) Lynn J, Schuster JL, Kabcenell A. Improving Care for the End of Life; A Sourcebook for Health Care Managers and Clinicians. 1-408. 2000. Oxford, Oxford University Press.
Competing interests: None declared
Competing interests: No competing interests