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ARRA Investments in Research to Enhance End-Of-Life and Palliative Care

Public Health Burden
The life expectancy of the American people has reached an historic high, but along with increased life expectancy comes an increase in the number of people living with, and dying from, debilitating illnesses. Researchers are applying interdisciplinary biological, behavioral, and social science strategies to advance understanding of the challenges of terminal and life-threatening illnesses with respect to the needs of individuals and their caregivers.

Improving Quality of Life
There is an urgent need for ways to improve quality of life for those with life-limiting conditions through evidence-based palliative and end-of-life care interventions. End-of-life and palliative care research explores the dynamic interactions of the various factors that influence the management of patients with serious illness and/or those at the end of life, including cultural, social, setting, age, and disease-specific factors. This research seeks to use this knowledge to develop better interventions to optimize patient and caregiver quality of life. ARRA-funded projects seek to improve the quality of end-of-life and palliative care through:
  • Understanding the behavioral mechanisms underlying racial/ethnic disparities in palliative care outcomes by using a novel technique to study differences in decision-making processes, treatment preferences, and medication adherence in African-Americans and Caucasians with cancer pain.1
  • Shifting the direction of quality of life research by moving beyond studies designed to relieve suffering, to focusing on studies designed to investigate the potential for identifying and building on positive psychological strengths and traits in order to improve palliative and end-of-life care.2
  • Examining better methods for studying sleep in older patients admitted to an ICU who require mechanical ventilation and determining patterns of sleep disturbances and sleep characteristics of these patients in order to develop better ways to manage sleep and improve outcomes in this population.3
  • Testing the effects of a cognitive behavioral therapy for insomnia on sleep efficiency, daytime symptoms (e.g. fatigue, depression), and functional performance in middle-aged and older adults who have heart failure.4
Decision-making by patients, caregivers, and providers at the end-of-life can be challenging and difficult. Much public attention has been directed in recent years to the importance of the use of advance directives and technology to clarify communication regarding end-of-life decisions. ARRA-funded projects in this area are:
  • Expanding interactive, web-based training materials for clinicians designed to improve the effectiveness of communication between clinicians and patients from diverse populations, in order to improve the quality of health care at the end of life.5
  • Developing and testing a palliative care/end-of-life communication intervention for clinicians and parents of children facing terminal cancer diagnoses.6
  • Exploring how older patients with advanced cancer communicate their concerns and needs for care, and comparing the decision-making and service utilization of cancer patients who have enrolled in hospice with those who have not.7
Training and Supporting Formal and Informal Caregivers
While end-of-life and palliative care research often focuses on the patient, other research in this area concentrates on the professional and informal caregivers of patients with life-limiting conditions, who often face challenges themselves in end-of-life situations. This research seeks to enhance the skills of the clinicians charged with managing the patient, and to improve the quality of life of the family members and friends who serve as informal caregivers to the patient. ARRA-supported research projects focused on patients and their support networks are:
  • Improving palliative care of adolescents and young adults with chronic, life-threatening illnesses by developing and integrating enhanced interventions on the principles and practices of palliative care in the training of interdisciplinary clinicians.8
  • Developing a research center to enhance evidence-based care for people facing the end-of-life transition, including adults and children, and to develop enhanced data analysis and data mining capabilities for research in this area.9
  • Testing an intervention to train caregivers of hospice heart failure patients in problem-solving skills and methods for improved symptom management, with the possibility of improving well-being for patients and caregivers alike.10

  1. 1RC1NR011591-01 -- A Novel Approach to Elucidate Mechanisms for Disparity in Cancer Pain Outcomes- Meghani, Salimah H (PA)
  2. 1P30NR011907-01 -- Building End-of-Life Science through Positive Human Strengths and Traits- Daly, Barbara J (OH)
  3. 1R21NR011066-01A1 -- Feasibility of Measuring Sleep in a Critical Care Environment -- Pisani, Margaret (CT)
  4. 1R21NR011387-01 -- Cognitive Behavioral Therapy for Insomnia in Stable Heart Failure -- Redeker, Nancy S (CT)
  5. 1R21NR010896-01A1 - Reducing Health Disparities at End of Life- Doorenbos Ardith Z (WA)
  6. 1R21NR011071-01A1 - Timely End-of-Life Communication to Parents of Children with Brain Tumors -- Ferguson, Verna Lee (MO)
  7. 1RC1NR011647-01 -- Communication in Late-stage Cancer: Exploring Hospice Decision -- Waldrop, Deborah P (NY)
  8. 1RC1NR011710-01 -- A Vision of Hope: Integration of Palliative Care in Chronic Pediatric Diseases- Geller, Gail (MD)
  9. 3P30NR010680-03S1 - Center for End-of-Life Transition Research (CEoLTR)- Wilkie, Diana J (IL)
  10. 1R21NR011224-01A1 -- Pilot of an Intervention for Caregivers of Hospice Heart Failure Patients -- McMillan, Susan C (FL)

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