PURPOSE: To describe changes in the survival, incidence of attempted resuscitation, and utilization of hospice services among patients (pts) with DMD in our clinic over time, and to suggest a new approach to end-of-life discussions based on the psychology of patients with DMD.
METHODS: Retrospective chart review.
RESULTS: Ten of our pts with DMD died during the time period 4/2/03- 4/1/07. Three of these pts were using noninvasive ventilation (NIV) 24 hrs/day and none had tracheostomy. Mean age at death +/- SD: 20.7 +/- 2.68 years. Two of the pts had hospice care, and 5 of 10 pts underwent unsuccessful resuscitation attempts. During the subsequent time period 4/2/07-4/1/11, eleven pts died. 8 pts had unmeasurably low vital capacities; 5 of these pts were ventilated 24 hrs/day noninvasively; 3 were ventilated 24 hrs/day via tracheostomy or NIV + tracheostomy. Mean age at death: 27.5 +/- 7.05 years (p = .01 compared with prior time interval). 8 pts died at home, 3 of whom had hospice care. Two pts experienced unsuccessful resuscitation attempts.
CONCLUSIONS: Among pts with end-stage DMD in our clinic, we have seen a shift to longer survival, increased use of 24 hr/day assisted ventilation, and decreased frequency of attempted resuscitation. Hospice care was utilized by only 20-30% of our pts in both time intervals. The causes of longer survival likely include improved pulmonary, cardiac, and nutritional support. The decreased incidence of attempted resuscitations may reflect improved end-of-life care. But end-of-life decision-making remains suboptimal, reflected in limited utilization of hospice services and the persistence of unsuccessful resuscitation attempts.
CLINICAL IMPLICATIONS: Contemporary medical management of DMD is resulting in progressively prolonged survival. Methods are needed to optimize quality of life in patients with end-stage disease. End-of-life decision making is complicated by the known psychological and cognitive deficits that affect pts with DMD. We will present ways to engage DMD pts in informed end-of-life decision-making based on our recent article on the psychological profile of pts with DMD.
DISCLOSURE: David Birnkrant: Consultant fee, speaker bureau, advisory committee, etc.: Hill-Rom corporation
The following authors have nothing to disclose: Jennifer Birnkrant, David Bennett, Garey Noritz, Michael Harrington
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