Trajectories of Serious Illness: Patients and Caregivers

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DESCRIPTION (provided by applicant): Dying patients confront complex and unique challenges that threaten their physical, psychosocial and spiritual integrity. Despite recent interventions to improve palliative care, little is known about how dying patients and their families progress along the continuum from serious illness to death, and the most effective strategies for integrating curative and palliative care. The purpose of this research is to follow patients with three representative advanced chronic illnesses - metastatic cancer, NYHA Class IV congestive heart failure, and chronic obstructive pulmonary disease with hypercapnea - and their caregivers prospectively in order to describe multiple dimensions of the end-of-life experience. The specific aims of this proposal are to: 1. Describe patients' trajectories of physical symptoms, functional status, emotional function, quality of life, preparation for death, spirituality, and awareness of dying. 2. Describe caregivers' trajectories of anticipatory grief, caregiver burden and awareness of dying. 3. Examine the relationships between these trajectories (e.g., patient spirituality and functional status). 4. Determine the extent to which these trajectories are modified by patient and caregiver characteristics (e.g., ethnicity, disease type, coping style) and health services utilization (e.g., emergency department visits, hospitalizations, hospice enrollment). 5. Assess, in post-death interviews, timing of caregivers' realizations that the patient was dying, and locate disease time points along pre-death patient and caregiver trajectories. Two hundred forty patients and their primary caregivers living within a circumscribed geographic region will be enrolled. Key domains as listed in the specific aims will be assessed monthly until death, or for up to two years. Longitudinal variables will be analyzed using generalized growth mixture models and linear mixed effects models, and four hypotheses tested. The results from these analyses will be used to develop clinical profiles of patient and caregiver subgroups, identifying times of heightened need and potential targets for intervention. Knowledge of domain-specific trajectory patterns, such as abrupt versus progressive functional decline, and interactions between domains, such as physical symptoms, mood and awareness of dying, will illuminate our understanding of how seriously ill patients and their caregivers experience the transition from serious illness to death, and guide efforts to improve care of the dying.