Abstract

Little is known about the association between cognitive dysfunction among informal caregivers and patients’ plans and preferences for patients’ end of life care. We report on the frequency of cognitive dysfunction among both patients and caregivers and examine associations between caregivers’ cognitive screening scores and end of life plans and preferences of patients with advanced cancer. The current sample was derived from a National Cancer Institute- and National Institute of Mental Health-funded study of patients with distant metastasis who had disease progression on at least first-line chemotherapy, and their informal caregivers (n = 550 pairs). The Pfeiffer Short Portable Mental Status, a validated cognitive screen, was administered to patients and caregivers. Patients were interviewed about their end of life plans and preferences. Logistic regression models regressed patients’ advance care planning and treatment preferences on caregivers’ cognitive screen scores. Patients’ cognitive screen scores were included as covariates. Most caregivers (55%) were spouses. Almost 30% of patients scored worse on the cognitive screen than their caregivers and 12% of caregivers scored worse than the patients. For each additional error that caregivers made on the cognitive screen, patients were more likely (AOR = 1.59, p = 0.002) to report that they preferred that everything possible be done to keep them alive and were less likely (AOR = 0.75, p = 0.04) to have a living will or a health care proxy/durable power of attorney. Worse caregiver cognitive screening scores were associated with higher likelihood of patients’ reporting that they wanted everything done to save their lives and a lower likelihood of having a living will or other type of advanced care plan. Future studies should confirm these findings in other populations and determine the mechanisms that may underlie the identified relationships.

Highlights

  • IntroductionAnd friends who serve as unpaid, informal caregivers of patients with serious illnesses assume various caregiving responsibilities ranging from assisting with activities of daily living (e.g., meal preparation, transportation) to accompanying them to medical appointments.[1] As patients approach death, caregiving responsibilities often expand to include representing patients’ wishes and making medical decisions on their behalf.[2,3]

  • And friends who serve as unpaid, informal caregivers of patients with serious illnesses assume various caregiving responsibilities ranging from assisting with activities of daily living to accompanying them to medical appointments.[1]

  • Because caregivers often influence the medical decisions of patients,[5,6] it is important to examine how cognitive impairment of caregivers may affect patient outcomes

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Summary

Introduction

And friends who serve as unpaid, informal caregivers of patients with serious illnesses assume various caregiving responsibilities ranging from assisting with activities of daily living (e.g., meal preparation, transportation) to accompanying them to medical appointments.[1] As patients approach death, caregiving responsibilities often expand to include representing patients’ wishes and making medical decisions on their behalf.[2,3] These end-of-life (EoL) caregiving responsibilities are challenging because they often involve weighing complicated and suboptimal treatment alternatives, engender feelings of conflict, and carry long-term consequences. Individuals who have mild dysfunction may have impairment in executive function, difficulties finding words, following directions, or staying on task These impairments, in turn, may influence patients’ EoL preferences and plans in ways heretofore unrecognized. We sought to examine the frequency of mild cognitive dysfunction in advanced cancer patients and their informal caregivers, and the influence of caregivers’ cognitive dysfunction on patient EoL preferences and care plans

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