Hostname: page-component-cd9895bd7-dk4vv Total loading time: 0 Render date: 2024-12-19T03:27:13.694Z Has data issue: false hasContentIssue false

Advance Directives and Code Status Information Exchange: A Consensus Proposal for a Minimum Set of Attributes

Published online by Cambridge University Press:  20 December 2018

Abstract:

Documentation of code status and advance directives for end-of-life (EOL) care improves care and quality of life, decreases cost of care, and increases the likelihood of an experience desired by the patient and his/her family. However, the use of advance directives and code status remains low and only a few organizations maintain code status in electronic form. Members of the American Medical Informatics Association’s Ethics Committee identified a need for a patient’s EOL care wishes to be documented correctly and communicated easily through the electronic health record (EHR) using a minimum data set for the storage and exchange of code status information. After conducting an environmental scan that produced multiple resources, Ethics Committee members used multiple conference calls and a shared document to arrive at consensus on the proposed minimum data set. Ethics Committee members developed a minimum required data set with links to the HL7 C_CDA Advance Directives Module. Data categories include information on the organization obtaining the code status information, the patient, any supporting documentation, and finally the desired code status information including mandatory, optional, and conditional elements. The “minimum set of attributes” to exchange advance directive / code status data described in this manuscript enables communication of patient wishes across multiple providers and health care settings. The data elements described serve as a starting point for a dialog among informatics professionals, physicians experienced in EOL care, and EHR vendors, with the goal of developing standards for incorporating this functionality into the EHR systems.

Type
Departments and Columns
Copyright
Copyright © Cambridge University Press 2018 

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

Footnotes

This section features original work on ethical, legal, policy, and social aspects of the use of computing and information technology in health, biomedical research, and the health professions. For submissions, contact Kenneth Goodman at [email protected].

References

Notes

1. Heyland, DK, Ilan, R, Jiang, X, You, JJ, Dodek, P. The prevalence of medical error related to end-of-life communication in Canadian hospitals: Results of a multicentre observational study. BMJ Quality & Safety 2016 Sep;25(9):671–9.CrossRefGoogle ScholarPubMed

2. Galushko, M, Romotzky, V, Voltz, R. Challenges in end-of-life communication. Current Opinion in Supportive and Palliative Care 2012 Sep;6(3):355–64.CrossRefGoogle ScholarPubMed

3. Brown, BA. The history of advance directives: A literature review. Journal of Gerontological Nursing 2003 Sep;29(9):414.CrossRefGoogle ScholarPubMed

4. Celso, BG, Meenrajan, S. The triad that matters: Palliative medicine, code status, and health care costs. The American Journal of Hospice & Palliative Care 2010 Sep;27(6):398401.CrossRefGoogle ScholarPubMed

5. Collier, KS, Kimbrel, JM, Protus, BM. Medication appropriateness at end of life: A new tool for balancing medicine and communication for optimal outcomes—the BUILD model. Home Healthcare Nurse 2013 Oct;31(9):518–24.CrossRefGoogle ScholarPubMed

6. Caissie, A, Kevork, N, Hannon, B, Le, LW, Zimmermann, C. Timing of code status documentation and end-of-life outcomes in patients admitted to an oncology ward. Supportive Care in Cancer 2014 Feb;22(2):375–81.CrossRefGoogle Scholar

7. Silveira, MJ, Kim, SY, Langa, KM. Advance directives and outcomes of surrogate decision making before death. New England Journal of Medicine. 2010 Apr 1;362(13):1211–8.CrossRefGoogle ScholarPubMed

8. Lee, MC, Sulmasy, DP, Gallo, J, Kub, J, Hughes, MT, Russell, S, et al. Decision-making of patients with implantable cardioverter-defibrillators at end of life: Family members’ experiences. The American Journal of Hospice & Palliative Care 2017 Jul;34(6):518–23.CrossRefGoogle ScholarPubMed

9. See note 1, Heyland, Ilan, Jiang, You, Dodek 2016:671–9.

10. Levin, S. H.R.4449 - 101st Congress (1989-1990): Patient Self Determination Act of 1990; 1990; available at https://www.congress.gov/bill/101st-congress/house-bill/4449 (last accessed 11 Feb 2018).Google Scholar

11. See note 1, Heyland, Ilan, Jiang, You, Dodek 2016:671–9.

12. Suri, DN, Egleston, BL, Brody, JA, Rudberg, MA. Nursing home resident use of care directives. The Journals of Gerontology. Series A. Biological Sciences and Medical Sciences 1999 May;54(5):M225–9.CrossRefGoogle ScholarPubMed

13. Rao, JK, Anderson, LA, Lin, FC, Laux, JP. Completion of advance directives among U.S. consumers. American Journal of Preventive Medicine 2014 Jan;46(1):6570.CrossRefGoogle ScholarPubMed

14. Flanagan, ME, Patterson, ES, Frankel, RM, Doebbeling, BN. Evaluation of a physician informatics tool to improve patient handoffs. Journal of the American Medical Informatics Association 2009 Jul-Aug;16(4):509–15.CrossRefGoogle ScholarPubMed

15. Anderson, J, Shroff, D, Curtis, A, Eldridge, N, Cannon, K, Karnani, R, et al. The Veterans Affairs shift change physician-to-physician handoff project. Joint Commission Journal on Quality and Patient Safety 2010 Feb;36(2):6271.CrossRefGoogle ScholarPubMed

16. Temel, JS, Greer, JA, Admane, S, Solis, J, Cashavelly, BJ, Doherty, S, et al. Code status documentation in the outpatient electronic medical records of patients with metastatic cancer. Journal of General Internal Medicine 2010 Feb;25(2):150–3.CrossRefGoogle ScholarPubMed

17. Temel, JS, Greer, JA, Gallagher, ER, Jackson, VA, Lennes, IT, Muzikansky, A, et al. Electronic prompt to improve outpatient code status documentation for patients with advanced lung cancer. Journal of Clinical Oncology 2013 Feb 20;31(6):710–5.CrossRefGoogle ScholarPubMed

18. Bhatia, HL, Patel, NR, Choma, NN, Grande, J, Giuse, DA, Lehmann, CU. Code status and resuscitation options in the electronic health record. Resuscitation 2015 Feb;87:1420.CrossRefGoogle ScholarPubMed

19. Long Term Care Minimum Data Set 3.0 | ResDAC - Data Documentation; available at http://www.resdac.org/cms-data/files/mds-3.0/data-documentation (last accessed 11 Feb 2018).

20. See note 16, Temel, Greer, Admane, Solis, Cashavelly, Doherty, et al. 2013:710–5.

21. Care Planning Hearing; available at http://www.healthit.gov/facas/sites/faca/files/HITPC_CAWGCarePlanningHearingUpdate2013-11-06.pdf (last accessed 11 Feb 2018).

22. Online Advance Medical Directives, Better than a Living Will | MyDirectives; available at https://mydirectives.com/ (last accessed 11 Feb 2018).

23. See note 16, Temel, Greer, Admane, Solis, Cashavelly, Doherty, et al. 2013:710–5.

24. Programs in Your State; available at http://www.polst.org/programs-in-your-state/ (last accessed 11 Feb 2018).

25. Wood, NM, D’Amore, JD, Jones, SL, Sittig, DF, Ness, RB. Death, taxes and advance directives. Applied Clinical Informatics 2014 Jun 25;5(2):589–93.Google ScholarPubMed

26. Advance Directive Code; available at http://www.vico.org/HL7_V2_5/v251/std251/ch03.html#Heading220 (last accessed 11 Feb 2018).

27. Azoulay, E, Pochard, F, Kentish-Barnes, N, Chevret, S, Aboab, J, et al. Risk of post-traumatic stress symptoms in family members of intensive care unit patients. American Journal of Respiratory and Critical Care Medicine 2005 May 1;171(9):987–94.CrossRefGoogle ScholarPubMed

28. Fu, S, Hong, DS, Naing, A, Wheler, J, Falchook, G, Wen, S, et al. Outcome analyses after the first admission to an intensive care unit in patients with advanced cancer referred to a phase I clinical trials program. Journal of Clinical Oncology 2011 Sept 10;29(26):3547–52.CrossRefGoogle Scholar

29. Ardagh, M. Futility has no utility in resuscitation medicine. Journal of Medical Ethics 2000 Oct;26(5):396–9.CrossRefGoogle ScholarPubMed

30. Heyland, DK, Frank, C, Groll, D, Pichora, D, Dodek, P, Rocker, G, et al. Understanding cardiopulmonary resuscitation decision making: Perspectives of seriously ill hospitalized patients and family members. Chest 2006 Aug;130(2):419–28.CrossRefGoogle ScholarPubMed

31. Pentz, RD, Flamm, AL. Code status discussion: Just have one. Cancer 2013 June 1;119(11):1938–40.CrossRefGoogle ScholarPubMed

32. See note 14, Flanagan, Patterson, Frankel, Doebelling 2009:509–15.