Prospective study of palliative care in ALS: choice, timing, outcomes

To understand palliative care choices among people with ALS, it is important to follow a group of recently diagnosed patients and record when patients reach well-defined palliative care milestones. We began following such a cohort prospectively in 1996, when 121 ALS patients were enrolled from a tertiary care clinic. These patients are assessed every 4 months to determine their experience with ameliorative and palliative care. Domains include adjuvant therapies (e.g. speech therapy), adaptive aids (e.g. wheelchair use, augmentative communication), home health care, PEG placement, pulmonary support, health care directives, psychosocial care (e.g. participation in support group, pastoral counseling), and hospitalization. The median follow-up time for the cohort, to date, was 12 months. In the group that entered the cohort within 1 year of their diagnosis (n=93), 53.8% have died, 22.6% have had PEG, 19.4% have used Bi-PaP, and 4.3% have had a tracheostomy. Many patients did not take advantage of palliative care options before death; for example, 36.6% used hospice, 48% had signed a power of attorney form, and 18% had 'do not resuscitate' orders in their medical charts. Examining time to such endpoints captures important features of patient and family experience with the disease.