Project Details
Description
Description: (Adapted from investigator's abstract) Amyotrophic lateral
sclerosis (ALS) is a progressive neurodegenerative disease that results in
death, usually from respiratory insufficiency or aspiration, within 3 to 5
years of diagnosis. The disease affects all voluntary motor function except eye
movement and sphincter control. In the final 6-9 months of life, patients must
choose (either explicitly or by default) palliation or tracheostomy and
long-term mechanical ventilation (LTMV). In this 4 year project, we will follow
140 patients diagnosed with definite or probable ALS who face a high likelihood
of death within 6-9 months, as defined by poor pulmonary function, dysphagia
and weight loss, or hospice certification or eligibility. These patients will
be followed with bimonthly in-home assessments, and with an additional
assessment in the last weeks of life. We will also interview the primary family
caregiver on the same schedule and once after the patient's death, as well as
conduct a survey of medical providers' influence on end-of-life decisions. In
this observational cohort study, we propose (1) to assess the prevalence and
course of depressive disorders and symptoms in ALS patients in the final months
of life and its relevance for decision-making at the end of life; (2) to
identify predictors of tracheostomy/LTMV use; (3) to examine the degree to
which patients and families take steps to control the timing of death by
adopting a strict palliative care regime; and (4) to examine associations
between patient and caregiver distress in the final months of life. Key
questions include the following: Do levels of distress and depressive symptoms
increase as patients approach death, and does this relationship differ
according to choice of palliative care or LTMV? What maintains hope in these
patients, who are, in a medical sense, hopelessly ill? Of patients who receive
LTMV, in what proportion is LTMV consciously planning for, as opposed to an
unplanned emergency procedure? Is patient mental health or caregiver burden
associated with decisions to forego or undergo LTMV? To what degree does use of
non-invasive, temporary nasal ventilation (Bi-Pap) prevent use of LTMV? These
questions have not been investigated in a prospective study. We will be able to
address them through repeated, detailed assessments of patients and caregivers.
This information will be critical for understanding the experience of patients
with terminal disease as they and their families face end-of-life care
decisions.
Status | Finished |
---|---|
Effective start/end date | 8/20/00 → 12/31/07 |
Funding
- National Institute of Mental Health: US$383,625.00
- National Institute of Mental Health: US$383,625.00
- National Institute of Mental Health: US$243,042.00
- National Institute of Mental Health: US$383,625.00
ASJC Scopus Subject Areas
- Clinical Neurology
- Neurology
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