Opening end-of-life discussions: How to introduce Voicing My CHOiCES™, an advance care planning guide for adolescents and young adults

Palliative and Supportive Care

Volumn 13, Issue 3, 2013, Pages 591-599

  Zadeh, Sima ^a   Pao, Maryland ^b   Wiener, Lori ^a  

^a NATIONAL CANCER INSTITUTE   (United States)

^b NATIONAL INSTITUTE OF MENTAL HEALTH   (United States)

Author keywords

Adolescents and young adults; Advance care planning; Communication; End of life; Palliative care

Indexed keywords

ADOLESCENT; DOCTOR PATIENT RELATION; HEALTH CARE PLANNING; HUMAN; HUMAN IMMUNODEFICIENCY VIRUS; INTERPERSONAL COMMUNICATION; PATIENT CARE; PROCEDURES; TERMINAL CARE; UTILIZATION; YOUNG ADULT;

ADOLESCENT; ADVANCE CARE PLANNING; COMMUNICATION; HEALTH PLANNING GUIDELINES; HIV; HUMANS; PHYSICIAN-PATIENT RELATIONS; TERMINAL CARE; YOUNG ADULT;

EID: 84945179921     PISSN: 14789515     EISSN: 14789523     Source Type: Journal    
DOI: 10.1017/S1478951514000054     Document Type: Article

References (30)

1. Christakis,N.A. (1999). Death foretold: Prophecy and prognosis in medical care. Chicago. University of Chicago Press.
2. Chochinov, H.M. (2006). Dying, dignity, and new horizons in palliative end-of-life care. CA: A Cancer Journal for Clinicians, 56(2), 84-103.
3. Chochinov, H.M., Hack, T., Hassard, T., et al. (2002). Dignity in the terminally ill: A cross-sectional, cohort study. Lancet, 360(9350), 2026-2030.
4. Coccia, P.F., Altman, J., Bhatia, S., et al. (2012). Adolescent and young adult oncology. Journal of the National Comprehensive Cancer Network, 10(9), 1112-1150.
5. Curtis, J.R., Patrick, D.L., Caldwell, E.S., et al. (2000). Why don't patients and physicians talk about end-oflife care? Barriers to communication for patients with acquired immunodeficiency syndrome and their primary care clinicians. Archives of Internal Medicine, 160(11), 1690-1696.
6. Emanuel, E.J., Fairclough, D.L., Wolfe, P., et al. (2004). Talking with terminally ill patients and their caregivers about death, dying, and bereavement. Archives of Internal Medicine, 164, 1999-2004.
7. Erikson, E.H. (1950). Childhood and society. New York: W.W. Norton.
8. Gorman, T.E., Ahern, S.P., Wiseman, J., et al. (2005). Residents' end-of-life decision making with adult hospitalized patients: A review of the literature. Academic Medicine: Journal of the Association of American Medical Colleges, 80(7), 622-633.
9. Hammes, B.J. & Briggs, L. (2011). Respecting Choicesw: Building a systems approach to advance care planning. LaCrosse, WI: Gundersen Health Systems.
10. Hammes, B.J., Klevan, J., Kempf, M., et al. (2005). Pediatric advance care planning. Journal of Palliative Medicine, 8, 766-773.
11. Hinds, P.S., Drew, D., Oakes, L.L., et al. (2003). End-of-life preferences of pediatric patients with cancer. Journal of Clinical Oncology, 23, 9146-9154.
12. Larson, D.G. & Tobin, D.R. (2000). End-of-life conversations. Evolving practice and theory. The Journal of the American Medical Association, 284, 1573-1578.
13. Legare, F., Ratte, S., Gravel, K., et al. (2008). Barriers and facilitators to implementing shared decision-making in clinical practice: Update of a systematic review of health professionals' perceptions. Patient Education and Counseling, 73(3), 526-535.
14. Lyon, M.E., McCabe, M.A., Patel, K.M., et al. (2004). What do adolescents want? An exploratory study regarding end-of-life decision-making. Journal of Adolescent Health, 35, 1-6.
15. McAiley, L.G., Hudson-Barr, D.C., Gunning, R.S., et al. (2000). The use of advance directives with adolescents. Pediatric Nursing, 26, 471-480.
16. Morrison, M.F. (1998). Obstacles to doctor-patient communication at the end of life. In End-of-life decisions: A psychosocial perspective. M.D. Steinberg & S.J. Youngner (eds.), pp. 109-136. Washington, DC: American Psychiatric Press.
17. Pousset, G., Bilsen, J., DeWilde, J., et al. (2009). Attitudes of adolescent cancer survivors toward end-of-life decisions for minors. Pediatrics, 12, e1142-e1148.
18. Prendergast, T.J. (2001). Advance care planning: Pitfalls, progress and promise. Critical Care Medicine, 29(Suppl. 2), N34-N39.
19. Scherer, Y., Jezewski, M.A., Graves, B., et al. (2006). Advance directives and end-of-life decision making: Survey of critical care nurses' knowledge, attitude, and experience. Critical Care Nurse, 26(4), 30-40.
20. Thompson, K., Dyson, G., Holland, L., et al. (2013). An exploratory study of oncology specialists understanding of the preferences of young people living with cancer. Social Work in Health Care, 52, 166-190.
21. Waldman, E. &Wolfe, J. (2013). Palliative care for children with cancer. Nature Reviews Clinical Oncology, 10, 100-107.
22. Waldman, E. &Wolfe, J. (2013). Palliative care for children with cancer. Nature Reviews. Clinical Oncology, 10(2), 100-107.
23. Weissman,D.E. (1998).Afaculty development course for endof-life care. Journal of Palliative Medicine, 1, 35-44.
24. Wenger, N.L., Shugarman, L.R. & Wilkinson, A. (2008). ADs and advance care planning: Report to Congress. Retrieved July 15, 2013 from http://aspe.hhs.gov/daltcp/reports/2008/ADCongRpt.htm.
25. Wiener, J.S. & Roth, J. (2006). Avoiding iatrogenic harm to patient and family while discussing goals of care near the end of life. Journal of Palliative Medicine, 9(2), 451-463.
26. Wiener, L., Ballard, E., Brennan, T., et al. (2008). How I wish to be remembered: The use of an advanced care planning document in adolescent and young adult populations. Journal of Palliative Medicine, 11(10), 1309-1311.
27. Wiener, L., Zadeh, S., Battles, H., et al. (2012). Allowing adolescents and young adults to plan their end-of-life care. Pediatrics, 130(5), 897-905.
28. Wiener, L., Zadeh, S.,Wexler, L., et al. (2013). When silence is not golden: Engaging adolescents and young adults in discussions around end-of-life care. Pediatric Blood & Cancer, 60, 715-718.
29. Vieder, J.N., Krafchick, M.A., Kovach, A.C., et al. (2002). Physician-patient interaction: What do elders want? The Journal of the American Osteopathic Association, 102(2), 73-78.
30. Yedidia, M.J. (2007). Transforming doctor-patient relationships to promote patient-centered care: Lessons from palliative care. Journal of Pain and Symptom Management, 33(1), 40-57.