Influence of AND and DNR on Decisional Conflict in Surrogate Decision-Makers

1. Purpose The purpose of this study was to examine the influence of the terms AND and DNR on decisional conflict in surrogate decision-makers. Decisional conflict is defined as a state of uncertainty about what actions should be taken when actions involve risk, loss, regret, or challenge an individual’s personal life values, (O’Connor, 1995).

2. Concept, Instrument, Theoretical Framework • Decisional Conflict • Decisional Conflict Scale (O’Connor, 1995) • Ottawa Decision Support Framework (O’Connor, 1995) • Patient Decision Aid

3. Problem Statement (Why?) Surrogate decision makers’ decisional conflict may be affected by the terminology used at the time of end of life decision making. Decisional conflict and decision delay at the end of life often result in painful, futile, and costly care.

4. Who, What ,Where? Who - A convenience sample of 234 adults age 50 and older What – Compared the relationship between end of life terminologies and decisional conflict in surrogate decision makers. Where – Active adult communities, and senior centers in New Jersey.

5. How? How - Participants were randomized into two groups, and each received a vignette that was personalized. The vignettes varied only in the use of the words “Do Not Resuscitate (DNR)” and “Allow Natural Death (AND)”. The Decisional Conflict Scale (DCS) was administered. • The information sheet (tacit consent) • The designated loved one page • One of two versions of a patient decision aid: (AND vs DNR) • One of two corresponding personalized vignettes (AND vs DNR) • The Decisional Conflict Scale (AND vs DNR) • The demographic data sheet.

6. Literature Review • The need for the study was supported by prior research as well as gaps in research. • Venneman et al., (2008) • Jones et al., (2008) • Wittmann-Price and Cella, (2010) • Barnato and Arnold, (2013) • Buscaino et al., (2013)

7. Question 1 Is there a difference in surrogate decision makers’ decisional conflict when the terms Allow Natural Death or Do Not Resuscitate are used? • There was no significant difference in surrogate decision makers’ total score for decisional conflict when the terms AND or DNR were used. • This finding is consistent with the findings of Barnato and Arnold (2013), who evaluated the effect of • AND versus DNR on surrogate decision makers’ decisional conflict and found that the terminologies AND and DNR, did NOT impact decisional conflict.

8. Question 2 What is the relationship between select demographic variables and decisional conflict among surrogate decision makers? • Experienced decision makers emerged as a discreet group • EDMs in general had lower mean total DCS scores and lower mean subscores, indicating that prior experience is an important aspect of end of life decision making.

9. Experienced Decision Makers (EDMs) • 1. felt more informed. • 2. were clearer about personal values; benefits and risks of side effects with end of life decision making. • 3. felt more supported. • 4. felt more certain that they had made the right choice • 5. felt that they had made an informed choice that reflected what was important to them; and • 6. were satisfied with their decision and expected to stick with their decision. • 7. felt more certain that they had made a good decision. • Finally, EDMs with the AND version were more likely to perceive their decision as good; were more likely to be to be sure of their decision, indicating that experienced decision makers respond more favorably to the words Allow Natural Death.

10. Question 3 Is there a difference in surrogate decision makers’ decision delay based upon the terminology Allow Natural Death or Do Not Resuscitate? No statistical difference in surrogate decision makers’ decision delay based upon the terminology Allow Natural Death or Do Not Resuscitate.

11. Question 4 What is the relationship between select demographic variables and decision delay among surrogate decision makers? No statistically significant relationship was found between the demographic variables and decision delay among surrogate decision makers.

12. Question 5 Is there a difference in surrogate decision makers’ decision implementation based upon the terminology Allow Natural Death or Do Not Resuscitate? No statistically significant statistical difference in surrogate decision maker’s decision implementation based upon the terminology Allow Natural Death or Do Not Resuscitate was identified in this study.

13. Question 6 Is there a difference in surrogate decision makers’ end of life decision making based upon the terminology Allow Natural Death or Do Not Resuscitate? 1) Participants were eight times more likely to sign the document when it was an AND document than were participants who were asked to sign a DNR document. 2) This indicates that framing influences surrogate decision making at the end of life. Consistent with the findings of Venneman et al (2008), Wittmann-Price and Cella (2010), Barnato and Arnold (2013), and Buscaino et al (2013).

14. Question 7 What is the relationship between select demographic variables and end of life decision making? 1) Experienced decision makers respond more favorably to the words Allow Natural Death. 2) DNR respondents reported more uncertainty with their decision. 3) Therefore, DNR leads to decreased likelihood of actually making a decision. 4) Finally, a greater number of respondents to the DNR terminology were likely to not sign or postpone signing, leading to prolongation of life of dying individuals.

15. Additional Analyses There was a significant difference in the percentage of opened and not completed surveys between the AND and DNR versions. The DNR version has higher percentage of opened and not completed surveys than the AND version • Thirty-three participants completed the designated loved one page, opened the booklet and did not complete the remainder of the survey (AND version n=9 ); (DNR version n=24). • They viewed the terms in their respective booklets: Allow Natural Death or Do Not Resuscitate, and then decided to withdraw from the study.

16. Summary of Findings • No significant difference in total DCS score based on AND and DNR versions • Experienced decision makers were different • AND version was more likely to be signed than the DNR version

17. EDMs • lower mean total DCS scores. • more likely to perceive their decision as a good decision, and were clear about personal values and benefits and risks of signing the document regardless of AND or DNR terminology. • more likely to report that they felt more highly informed in making their decision, and felt better in their decision making. • more likely to perceive that they had made the best choice, and ­­­­terminology influences the long term wellbeing of surrogate decision makers. • more likely to perceive that they had made the best choice.

18. Limitations of the Study • Internal Validity - Vignette • Possibility of discrepancy in a simulated versus an actual situation. • Does not control for individual interpretation of the hypothetical experience, and the personal decision making characteristics of the participants. • Limited the social context under which end of life decisions are actually made • External Validity • Generalizability limited due to convenience sample of participants over the age of 50 who were Caucasian, educated, relatively affluent, and present and willing to participate in the study on the day the instrument is administered. • unknown sample variables • Control for Usual Care • Patient decision aids shown to decrease decisional conflict • effect the decision aid had verses usual care

19. Recommendations for Future Research • Where do we go from here?

20. References Barnato, A. E., & Arnold, R. M. (2013). The effect of emotion and physician communication behaviors on surrogates’ life-sustaining treatment decisions: a randomized simulation experiment. Critical Care Medicine, 41, 1686-1691. Jones, B. L., Parker-Raley, J., Higgerson, R., Christie, L. M., Legett, S., & Greathouse, J. (2008). Finding the right words: Using the terms allow natural death (AND) and do not resuscitate (DNR) in pediatric palliative care. Journal for Healthcare Quality, 30, 55-63. O'Connor, A. M. (1995). Validation of a decisional conflict scale. Medical Decision Making: An International Journal of the Society for Medical Decision Making, 15, 25-30. Venneman, S. S., Narnor-Harris, P., Perish, M., & Hamilton, M. (2008). "Allow natural death" versus "Do not resuscitate": Three words that can change a life. Journal of Medical Ethics, 34, 2-6. doi:10.1136/jme.2006.018317 Wittmann-Price, R., & Cella, L. M. (2010). Exploring perceptions of “do not resuscitate” and “allowing natural death” among physicians and nurses. Holistic Nursing Practice, 24, 333-337.