End-of-Life and Palliative Care: The Science of Compassion

Introduction

mom and daughterAs the lead NIH Institute for end-of-life research, NINR supports science to assist individuals, families, and health care professionals in managing the symptoms of life-limiting conditions and planning for end-of-life decisions. NINR also recognizes that high-quality, evidence-based palliative care is a critical component of maintaining quality of life at any stage of illness, not just at the end of life. On May 7, 2014, NINR convened a workshop of experts in the field of end-of-life and palliative care. These experts were asked to propose and discuss a series of research questions that could point the way forward for nursing science in end-of-life and palliative care research and inform future NINR efforts in this area.

Innovative Questions in End-of-Life and Palliative Care

4-1 - How do we overcome barriers in underserved, hard-to-reach populations in order to implement culturally congruent, patient- and caregiver-centered palliative care strategies?

4-2 - What palliative care interventions/strategies best align with patient and caregiver goals?

4-3 - How do type, intensity, complexity, and fluctuation of symptom burden impact individual and family goals for care?

4-4 - What are the best models for community-based palliative care?

4-5 - What are the strategies for assessing caregiver preparedness and self-care abilities for palliative care early in the illness trajectory?

4-6 - For symptom management at end of life, what are the best minimally invasive methods to monitor functional status, physiological status, and patient reported outcomes?

4-7 - What electronic data collection methods can be used by health care providers to monitor, evaluate, and improve palliative/end-of-life care?

4-8 - What are the best ways to measure patient reported outcomes using standardized, widely used instruments or common data elements?

4-9 - What are the most effective ways to motivate and engage individuals, caregivers, and families in conversations about end-of-life goals and values that inform decision making?

4-10 - How do we operationalize and individualize palliative care and which models best meet the supportive and end-of-life care needs of patients and families?

4-11 - What factors in palliative care impact the process of bereavement?