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

Published online by Cambridge University Press:  13 March 2014

Sima Zadeh ,
Maryland Pao  and
Lori Wiener
Sima Zadeh*
Affiliation:
The National Cancer Institute, National Institutes of Health, Bethesda, Maryland
Maryland Pao
Affiliation:
The National Institute of Mental Health, National Institutes of Health
Lori Wiener
Affiliation:
The National Cancer Institute, National Institutes of Health, Bethesda, Maryland
*
Address correspondence and reprint requests to: Sima Zadeh, The National Cancer Institute, National Institutes of Health, 10 Center Drive, Building 10, 1-H Pediatrics Clinic, Room 1-5460, Bethesda, Maryland 20892. E-mail: [email protected]
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Abstract

Objective:

Each year, more than 11,000 adolescents and young adults (AYAs), aged 15–34, die from cancer and other life-threatening conditions. In order to facilitate the transition from curative to end-of-life (EoL) care, it is recommended that EoL discussions be routine, begin close to the time of diagnosis, and continue throughout the illness trajectory. However, due largely to discomfort with the topic of EoL and how to approach the conversation, healthcare providers have largely avoided these discussions.

Method:

We conducted a two-phase study through the National Cancer Institute with AYAs living with cancer or pediatric HIV to assess AYA interest in EoL planning and to determine in which aspects of EoL planning AYAs wanted to participate. These results provided insight regarding what EoL concepts were important to AYAs, as well as preferences in terms of content, design, format, and style. The findings from this research led to the development of an age-appropriate advance care planning guide, Voicing My CHOiCES™.

Results:

Voicing My CHOiCES™: An Advanced Care Planning Guide for AYA became available in November 2012. This manuscript provides guidelines on how to introduce and utilize an advance care planning guide for AYAs and discusses potential barriers.

Significance of Results:

Successful use of Voicing My CHOiCES™ will depend on the comfort and skills of the healthcare provider. The present paper is intended to introduce the guide to providers who may utilize it as a resource in their practice, including physicians, nurses, social workers, chaplains, psychiatrists, and psychologists. We suggest guidelines on how to: incorporate EoL planning into the practice setting, identify timepoints at which a patient's goals of care are discussed, and address how to empower the patient and incorporate the family in EoL planning. Recommendations for introducing Voicing My CHOiCES™ and on how to work through each section alongside the patient are provided.

Keywords

End of lifePalliative careAdolescents and young adultsAdvance care planningCommunication
Type
Original Articles
Information
Palliative & Supportive Care , Volume 13 , Issue 3 , June 2015 , pp. 591 - 599
Copyright
Copyright © Cambridge University Press 2014 

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References

REFERENCES

Christakis, N.A. (1999). Death foretold: Prophecy and prognosis in medical care. Chicago. University of Chicago Press.Google Scholar
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.Google Scholar
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.Google Scholar
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.Google Scholar
Curtis, J.R., Patrick, D.L., Caldwell, E.S., et al. (2000). Why don't patients and physicians talk about end-of-life care? Barriers to communication for patients with acquired immunodeficiency syndrome and their primary care clinicians. Archives of Internal Medicine, 160(11), 1690–1696.Google Scholar
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.Google Scholar
Erikson, E.H. (1950). Childhood and society. New York: W.W. Norton.Google Scholar
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.Google Scholar
Hammes, B.J. & Briggs, L. (2011). Respecting Choices®: Building a systems approach to advance care planning. LaCrosse, WI: Gundersen Health Systems.Google Scholar
Hammes, B.J., Klevan, J., Kempf, M., et al. (2005). Pediatric advance care planning. Journal of Palliative Medicine, 8, 766–773.Google Scholar
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.Google Scholar
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.Google Scholar
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.Google Scholar
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.Google Scholar
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.Google Scholar
Morrison, M.F. (1998). Obstacles to doctor–patient communication at the end of life. In End-of-life decisions: A psychosocial perspective. Steinberg, M.D. & Youngner, S.J. (eds.), pp. 109–136. Washington, DC: American Psychiatric Press.Google Scholar
Pousset, G., Bilsen, J., De Wilde, J., et al. (2009). Attitudes of adolescent cancer survivors toward end-of-life decisions for minors. Pediatrics, 12, e1142–e1148.Google Scholar
Prendergast, T.J. (2001). Advance care planning: Pitfalls, progress and promise. Critical Care Medicine, 29(Suppl. 2), N34–N39.Google Scholar
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.Google Scholar
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.Google Scholar
Waldman, E. & Wolfe, J. (2013). Palliative care for children with cancer. Nature Reviews Clinical Oncology, 10, 100–107.Google Scholar
Waldman, E. & Wolfe, J. (2013). Palliative care for children with cancer. Nature Reviews. Clinical Oncology, 10(2), 100–107.Google Scholar
Weissman, D.E. (1998). A faculty development course for end-of-life care. Journal of Palliative Medicine, 1, 35–44.Google Scholar
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.Google Scholar
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.Google Scholar
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.Google Scholar
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.Google Scholar
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.Google Scholar
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.Google Scholar
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.Google Scholar