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Questionnaire: Progress, Barriers, & Needs in End-of-Life & Serious Illness Care

To assess progress since the release of the Dying in America report and to inform the work of a new Roundtable on Quality Care for People with Serious Illness at the National Academies of Sciences, Engineering, and Medicine, we are seeking feedback about the current landscape of care in five key areas: (1) person-centered, family-oriented care; (2) clinician-patient communication and advance care planning; (3) professional education and development; (4) policies and payment systems; and (5) public education and engagement. 

Thank you for helping us gather information on this important topic. Please contact Laura DeStefano at ldestefano@nas.edu with any questions. 
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4. Would you like to receive updates from the National Academy of Medicine?
5. Please select the option that best describes your affiliation:  *This question is required.
6. Are you familiar with the findings and recommendations of the Institute of Medicine report Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life?  *This question is required.
7. How familiar are other members of your professional peer group with the recommendations of the Dying in America report? *This question is required.
8. Have recommendations from the Dying in America report affected your professional or personal life? If yes, please explain how:  *This question is required.
9. During the past 18 months, do you think end-of-life care in America has improved, stayed the same, or gotten worse?  *This question is required.
10. During the past 18 months, in your professional or personal life, have you seen improvements in the way end-of-life care is delivered, particularly in its focus on individual preferences and family involvement?

For example: fewer transitions between care settings near the end of life; greater support for family caregivers; better understanding and greater utilization of palliative care among patients and families; more effective counseling and timely referral to palliative care by providers.  *This question is required.
11. During the past 18 months, in your professional or personal life, have you seen improvements in clinician-patient communication and advance care planning?

For example: more frequent advance care planning and communication about care preferences among care providers, patients, and their families (especially among younger, poorer, minority, and less-educated individuals); providers reliably honoring patient and family preferences; better incentives, quality standards, and system support to improve providers' communication skills and facilitate more frequent clinician-patient communication. *This question is required.
12. During the past 18 months, in your professional or personal life, have you seen improvements in professional education and development around end-of-life care? 

For example: more attention to palliative care in medical and nursing school curricula; more interdisciplinary care teams; more communication training for providers; more training in basic palliative care for health professionals. *This question is required.
13. During the past 18 months, in your professional or personal life, have you seen improvements in policies and payment systems to improve end-of-life care? 

For example: disincentives for use of acute services that increase cost and do not align with patient and family preferences; more programs that integrate health care and long-term social services; more incentives for palliative care, including hospice; more and better quality standards for care. *This question is required.
14. During the past 18 months, in your professional or personal life, have you seen improvements in public education and engagement around end-of-life care?

For example: greater knowledge about end-of-life care options among the general public; more efforts by health leaders to inform and educate the public on these issues; "normalization" of end-of-life discussions in personal and professional relationships and in the national dialogue. *This question is required.
15. If you answered "yes" to any of questions 9 through 13, would you characterize any of the improvements you've noticed as being a result of the Dying in America report? *This question is required.
16. How would you describe remaining barriers to improving end-of-life care? Select no more than 3. *This question is required.
17. In your opinion, what should be the highest-priority focus areas for improving end-of-life care? Select no more than 3.  *This question is required.
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