Skip to main content
Erschienen in: Journal of Clinical Psychology in Medical Settings 4/2021

18.02.2021 | Oncology

Ethical Issues in Providing End-of-Life Cancer Care for Transitional-Aged Youth

verfasst von: Natacha D. Emerson, Brenda Bursch

Erschienen in: Journal of Clinical Psychology in Medical Settings | Ausgabe 4/2021

Einloggen, um Zugang zu erhalten

Abstract

The aim of the study is to examine the salient ethical factors that arise in caring for transitional-aged cancer patients at the end of life (EOL). This article reviews significant clinical, ethical, and legal considerations relevant to psychologists working in oncology. Transitional-aged youth (TAY, ages 16–24) with cancer face a number of challenges when navigating treatment options at the EOL. Changes in treatment roadmaps, lapses in effective provider–patient communication, disagreements with parents, and developmental and disease-based changes in capacity all become salient in palliative care. Psychologists should be aware that both physician and patient factors influence the types of treatments proposed as well as the extent of EOL discussions. Psychologists are urged to bear in mind the ethical principles of respect for people’s rights and dignity and nonmaleficence to best aid families and multidisciplinary teams navigate this difficult time and promote quality of life and the patient’s wishes.
Literatur
Zurück zum Zitat Albert, D., & Steinberg, L. (2011). Judgment and decision making in adolescence. Journal of Research on Adolescence, 21(1), 211–224.CrossRef Albert, D., & Steinberg, L. (2011). Judgment and decision making in adolescence. Journal of Research on Adolescence, 21(1), 211–224.CrossRef
Zurück zum Zitat Appelbaum, P. S. (2007). Assessment of patients’ competence to consent to treatment. New England Journal of Medicine, 357(18), 1834–1840.CrossRef Appelbaum, P. S. (2007). Assessment of patients’ competence to consent to treatment. New England Journal of Medicine, 357(18), 1834–1840.CrossRef
Zurück zum Zitat Aristizabal, P., Singer, J., Cooper, R., Wells, K. J., Nodora, J., Milburn, M., … Martinez, M. E. (2015). Participation in pediatric oncology research protocols: Racial/ethnic, language and age‐based disparities. Pediatric Blood & Cancer, 62(8), 1337–1344. Aristizabal, P., Singer, J., Cooper, R., Wells, K. J., Nodora, J., Milburn, M., … Martinez, M. E. (2015). Participation in pediatric oncology research protocols: Racial/ethnic, language and age‐based disparities. Pediatric Blood & Cancer, 62(8), 1337–1344.
Zurück zum Zitat Bateman, L. B., White, M. L., Tofil, N. M., Clair, J. M., & Needham, B. L. (2017). A qualitative examination of physician gender and parental status in pediatric end-of-life communication. Health Communication, 32(7), 903–909.CrossRef Bateman, L. B., White, M. L., Tofil, N. M., Clair, J. M., & Needham, B. L. (2017). A qualitative examination of physician gender and parental status in pediatric end-of-life communication. Health Communication, 32(7), 903–909.CrossRef
Zurück zum Zitat Beresford, B. A., & Sloper, P. (2003). Chronically ill adolescents’ experiences of communicating with doctors: A qualitative study. Journal of Adolescent Health, 33(3), 172–179.CrossRef Beresford, B. A., & Sloper, P. (2003). Chronically ill adolescents’ experiences of communicating with doctors: A qualitative study. Journal of Adolescent Health, 33(3), 172–179.CrossRef
Zurück zum Zitat Bosslet, G. T., Pope, T. M., Rubenfeld, G. D., Lo, B., Truog, R. D., Rushton, C. H., … Au, D. H. (2015). An official ATS/AACN/ACCP/ESICM/SCCM policy statement: Responding to requests for potentially inappropriate treatments in intensive care units. American Journal of Respiratory and Critical Care Medicine, 191(11), 1318–1330. Bosslet, G. T., Pope, T. M., Rubenfeld, G. D., Lo, B., Truog, R. D., Rushton, C. H., … Au, D. H. (2015). An official ATS/AACN/ACCP/ESICM/SCCM policy statement: Responding to requests for potentially inappropriate treatments in intensive care units. American Journal of Respiratory and Critical Care Medicine, 191(11), 1318–1330.
Zurück zum Zitat Brand, S. R., Fasciano, K., & Mack, J. W. (2017). Communication preferences of pediatric cancer patients: Talking about prognosis and their future life. Supportive Care in Cancer, 25(3), 769–774.CrossRef Brand, S. R., Fasciano, K., & Mack, J. W. (2017). Communication preferences of pediatric cancer patients: Talking about prognosis and their future life. Supportive Care in Cancer, 25(3), 769–774.CrossRef
Zurück zum Zitat Britto, M. T., Tivorsak, T. L., & Slap, G. B. (2010). Adolescents’ needs for health care privacy. Pediatrics, 126, e1469–e1476.CrossRef Britto, M. T., Tivorsak, T. L., & Slap, G. B. (2010). Adolescents’ needs for health care privacy. Pediatrics, 126, e1469–e1476.CrossRef
Zurück zum Zitat Brown, A. E. C., & Slutzky, A. R. (2017). Refusal of treatment of childhood cancer: A systematic review. Pediatrics, 140(6), e20171951.CrossRef Brown, A. E. C., & Slutzky, A. R. (2017). Refusal of treatment of childhood cancer: A systematic review. Pediatrics, 140(6), e20171951.CrossRef
Zurück zum Zitat Ely, E. W., Inouye, S. K., Bernard, G. R., Gordon, S., Francis, J., May, L., … Hart, R. P. (2001). Delirium in mechanically ventilated patients: Validity and reliability of the confusion assessment method for the intensive care unit (CAM-ICU). JAMA, 286(21), 2703–2710. Ely, E. W., Inouye, S. K., Bernard, G. R., Gordon, S., Francis, J., May, L., … Hart, R. P. (2001). Delirium in mechanically ventilated patients: Validity and reliability of the confusion assessment method for the intensive care unit (CAM-ICU). JAMA, 286(21), 2703–2710.
Zurück zum Zitat Fink, A. S., Prochazka, A. V., Henderson, W. G., Bartenfeld, D., Nyirenda, C., Webb, A., … Wilson, M. (2010). Predictors of comprehension during surgical informed consent. Journal of the American College of Surgeons, 210(6), 919–926. Fink, A. S., Prochazka, A. V., Henderson, W. G., Bartenfeld, D., Nyirenda, C., Webb, A., … Wilson, M. (2010). Predictors of comprehension during surgical informed consent. Journal of the American College of Surgeons, 210(6), 919–926.
Zurück zum Zitat Freyer, D. R. (2010). Transition of care for young adult survivors of childhood and adolescent cancer: Rationale and approaches. Journal of Clinical Oncology, 28(32), 4810.CrossRef Freyer, D. R. (2010). Transition of care for young adult survivors of childhood and adolescent cancer: Rationale and approaches. Journal of Clinical Oncology, 28(32), 4810.CrossRef
Zurück zum Zitat Frost, D. W., Cook, D. J., Heyland, D. K., & Fowler, R. A. (2011). Patient and healthcare professional factors influencing end-of-life decision-making during critical illness: A systematic review. Critical Care Medicine, 39(5), 1174–1189.CrossRef Frost, D. W., Cook, D. J., Heyland, D. K., & Fowler, R. A. (2011). Patient and healthcare professional factors influencing end-of-life decision-making during critical illness: A systematic review. Critical Care Medicine, 39(5), 1174–1189.CrossRef
Zurück zum Zitat Gray, K. M., & Squeglia, L. M. (2018). Research review: What have we learned about adolescent substance use? Journal of Child Psychology and Psychiatry, 59(6), 618–627.CrossRef Gray, K. M., & Squeglia, L. M. (2018). Research review: What have we learned about adolescent substance use? Journal of Child Psychology and Psychiatry, 59(6), 618–627.CrossRef
Zurück zum Zitat Harrison, J., Evan, E., Hughes, A., Yazdani, S., Federman, M., & Harrison, R. (2014). Understanding communication among health care professionals regarding death and dying in pediatrics. Palliative & Supportive Care, 12(5), 387–392.CrossRef Harrison, J., Evan, E., Hughes, A., Yazdani, S., Federman, M., & Harrison, R. (2014). Understanding communication among health care professionals regarding death and dying in pediatrics. Palliative & Supportive Care, 12(5), 387–392.CrossRef
Zurück zum Zitat Ilowite, M. F., Cronin, A. M., Kang, T. I., & Mack, J. W. (2017). Disparities in prognosis communication among parents of children with cancer: The impact of race and ethnicity. Cancer, 123(20), 3995–4003.CrossRef Ilowite, M. F., Cronin, A. M., Kang, T. I., & Mack, J. W. (2017). Disparities in prognosis communication among parents of children with cancer: The impact of race and ethnicity. Cancer, 123(20), 3995–4003.CrossRef
Zurück zum Zitat Johnston, D. L., & Vadeboncoeur, C. (2012). Palliative care consultation in pediatric oncology. Supportive Care in Cancer, 20(4), 799–803.CrossRef Johnston, D. L., & Vadeboncoeur, C. (2012). Palliative care consultation in pediatric oncology. Supportive Care in Cancer, 20(4), 799–803.CrossRef
Zurück zum Zitat Katz, A. L., Webb, S. A., & Committee on Bioethics. (2016). Informed consent in decision-making in pediatric practice. Pediatrics, 138(2), e20161485.CrossRef Katz, A. L., Webb, S. A., & Committee on Bioethics. (2016). Informed consent in decision-making in pediatric practice. Pediatrics, 138(2), e20161485.CrossRef
Zurück zum Zitat Kroenke, K., & Spitzer, R. L. (2002). The PHQ-9: A new depression diagnostic and severity measure. Psychiatric Annals, 32(9), 509–515.CrossRef Kroenke, K., & Spitzer, R. L. (2002). The PHQ-9: A new depression diagnostic and severity measure. Psychiatric Annals, 32(9), 509–515.CrossRef
Zurück zum Zitat Kulkarni, S. P., Karliner, L. S., Auerbach, A. D., & Pérez-Stable, E. J. (2011). Physician use of advance care planning discussions in a diverse hospitalized population. Journal of Immigrant and Minority Health, 13(3), 620–624.CrossRef Kulkarni, S. P., Karliner, L. S., Auerbach, A. D., & Pérez-Stable, E. J. (2011). Physician use of advance care planning discussions in a diverse hospitalized population. Journal of Immigrant and Minority Health, 13(3), 620–624.CrossRef
Zurück zum Zitat Lamont, S., Jeon, Y. H., & Chiarella, M. (2013). Assessing patient capacity to consent to treatment: An integrative review of instruments and tools. Journal of Clinical Nursing, 22(17–18), 2387–2403.CrossRef Lamont, S., Jeon, Y. H., & Chiarella, M. (2013). Assessing patient capacity to consent to treatment: An integrative review of instruments and tools. Journal of Clinical Nursing, 22(17–18), 2387–2403.CrossRef
Zurück zum Zitat Linton, J. M., & Feudtner, C. (2008). What accounts for differences or disparities in pediatric palliative and end-of-life care? A systematic review focusing on possible multilevel mechanisms. Pediatrics, 122(3), 574–582.CrossRef Linton, J. M., & Feudtner, C. (2008). What accounts for differences or disparities in pediatric palliative and end-of-life care? A systematic review focusing on possible multilevel mechanisms. Pediatrics, 122(3), 574–582.CrossRef
Zurück zum Zitat Mack, J. W., Cook, E. F., Wolfe, J., Grier, H. E., Cleary, P. D., & Weeks, J. C. (2007). Understanding of prognosis among parents of children with cancer: Parental optimism and the parent-physician interaction. Journal of Clinical Oncology, 25(11), 1357–1362.CrossRef Mack, J. W., Cook, E. F., Wolfe, J., Grier, H. E., Cleary, P. D., & Weeks, J. C. (2007). Understanding of prognosis among parents of children with cancer: Parental optimism and the parent-physician interaction. Journal of Clinical Oncology, 25(11), 1357–1362.CrossRef
Zurück zum Zitat Mack, J. W., & Wolfe, J. (2006). Early integration of pediatric palliative care: For some children, palliative care starts at diagnosis. Current Opinion in Pediatrics, 18(1), 10–14.CrossRef Mack, J. W., & Wolfe, J. (2006). Early integration of pediatric palliative care: For some children, palliative care starts at diagnosis. Current Opinion in Pediatrics, 18(1), 10–14.CrossRef
Zurück zum Zitat Moberg, P. J., & Kniele, K. (2006). Evaluation of competency: Ethical considerations for neuropsychologists. Applied Neuropsychology, 13(2), 101–114.CrossRef Moberg, P. J., & Kniele, K. (2006). Evaluation of competency: Ethical considerations for neuropsychologists. Applied Neuropsychology, 13(2), 101–114.CrossRef
Zurück zum Zitat Parsons, H. M., Harlan, L. C., Lynch, C. F., Hamilton, A. S., Wu, X. C., Kato, I., … Keegan, T. H. (2012). Impact of cancer on work and education among adolescent and young adult cancer survivors. Journal of Clinical Oncology, 30(19), 2393. Parsons, H. M., Harlan, L. C., Lynch, C. F., Hamilton, A. S., Wu, X. C., Kato, I., … Keegan, T. H. (2012). Impact of cancer on work and education among adolescent and young adult cancer survivors. Journal of Clinical Oncology, 30(19), 2393.
Zurück zum Zitat Parsons, H. M., Harlan, L. C., Seibel, N. L., Stevens, J. L., & Keegan, T. H. (2011). Clinical trial participation and time to treatment among adolescents and young adults with cancer: Does age at diagnosis or insurance make a difference? Journal of Clinical Oncology, 29(30), 4045.CrossRef Parsons, H. M., Harlan, L. C., Seibel, N. L., Stevens, J. L., & Keegan, T. H. (2011). Clinical trial participation and time to treatment among adolescents and young adults with cancer: Does age at diagnosis or insurance make a difference? Journal of Clinical Oncology, 29(30), 4045.CrossRef
Zurück zum Zitat Pillai, R. K., & Jayasree, K. (2017). Rare cancers: Challenges & issues. The Indian Journal of Medical Research, 145(1), 17.CrossRef Pillai, R. K., & Jayasree, K. (2017). Rare cancers: Challenges & issues. The Indian Journal of Medical Research, 145(1), 17.CrossRef
Zurück zum Zitat Pousset, G., Bilsen, J., De Wilde, J., Benoit, Y., Verlooy, J., Bomans, A., … Mortier, F. (2009). Attitudes of adolescent cancer survivors toward end-of-life decisions for minors. Pediatrics, 124(6), e1142–e1148 Pousset, G., Bilsen, J., De Wilde, J., Benoit, Y., Verlooy, J., Bomans, A., … Mortier, F. (2009). Attitudes of adolescent cancer survivors toward end-of-life decisions for minors. Pediatrics124(6), e1142–e1148
Zurück zum Zitat Ross, L. F. (2009). Against the tide: Arguments against respecting a minor’s refusal of efficacious life-saving treatment. Cambridge Quarterly of Healthcare Ethics, 18(3), 302–315.CrossRef Ross, L. F. (2009). Against the tide: Arguments against respecting a minor’s refusal of efficacious life-saving treatment. Cambridge Quarterly of Healthcare Ethics, 18(3), 302–315.CrossRef
Zurück zum Zitat Sessums, L. L., Zembrzuska, H., & Jackson, J. L. (2011). Does this patient have medical decision-making capacity? JAMA, 306(4), 420–427.CrossRef Sessums, L. L., Zembrzuska, H., & Jackson, J. L. (2011). Does this patient have medical decision-making capacity? JAMA, 306(4), 420–427.CrossRef
Zurück zum Zitat Sisk, B. A., Canavera, K., Sharma, A., Baker, J. N., & Johnson, L. M. (2019). Ethical issues in the care of adolescent and young adult oncology patients. Pediatric Blood & Cancer, 66(5), e27608.CrossRef Sisk, B. A., Canavera, K., Sharma, A., Baker, J. N., & Johnson, L. M. (2019). Ethical issues in the care of adolescent and young adult oncology patients. Pediatric Blood & Cancer, 66(5), e27608.CrossRef
Zurück zum Zitat Smith, H. A., Boyd, J., Fuchs, D. C., Melvin, K., Berry, P., Shintani, A., … Sopfe, J. (2011). Diagnosing delirium in critically ill children: Validity and reliability of the Pediatric Confusion Assessment Method for the Intensive Care Unit. Critical Care Medicine, 39(1), 150. Smith, H. A., Boyd, J., Fuchs, D. C., Melvin, K., Berry, P., Shintani, A., … Sopfe, J. (2011). Diagnosing delirium in critically ill children: Validity and reliability of the Pediatric Confusion Assessment Method for the Intensive Care Unit. Critical Care Medicine, 39(1), 150.
Zurück zum Zitat Spitzer, R. L., Kroenke, K., Williams, J. B., & Löwe, B. (2006). A brief measure for assessing generalized anxiety disorder: the GAD-7. Archives of Internal Medicine, 166(10), 1092–1097.CrossRef Spitzer, R. L., Kroenke, K., Williams, J. B., & Löwe, B. (2006). A brief measure for assessing generalized anxiety disorder: the GAD-7. Archives of Internal Medicine, 166(10), 1092–1097.CrossRef
Zurück zum Zitat Thornton, J. D., Pham, K., Engelberg, R. A., Jackson, J. C., & Curtis, J. R. (2009). Families with limited English proficiency receive less information and support in interpreted ICU family conferences. Critical Care Medicine, 37(1), 89.CrossRef Thornton, J. D., Pham, K., Engelberg, R. A., Jackson, J. C., & Curtis, J. R. (2009). Families with limited English proficiency receive less information and support in interpreted ICU family conferences. Critical Care Medicine, 37(1), 89.CrossRef
Zurück zum Zitat Wiener, L., McConnell, D. G., Latella, L., & Ludi, E. (2013). Cultural and religious considerations in pediatric palliative care. Palliative & Supportive Care, 11(1), 47–67.CrossRef Wiener, L., McConnell, D. G., Latella, L., & Ludi, E. (2013). Cultural and religious considerations in pediatric palliative care. Palliative & Supportive Care, 11(1), 47–67.CrossRef
Zurück zum Zitat Wiener, L., Zadeh, S., Battles, H., Baird, K., Ballard, E., & Osherow, J. (2012). Allowing adolescents and young adults to plan their end-of-life care. Pediatrics, 130(5), 897–905.CrossRef Wiener, L., Zadeh, S., Battles, H., Baird, K., Ballard, E., & Osherow, J. (2012). Allowing adolescents and young adults to plan their end-of-life care. Pediatrics, 130(5), 897–905.CrossRef
Zurück zum Zitat Zadeh, S., & Wiener, L. (2015). Opening end-of-life discussions: How to introduce Voicing My CHOiCES™, an advance care planning guide for adolescents and young adults. Palliative & Supportive Care, 13(3), 591–599.CrossRef Zadeh, S., & Wiener, L. (2015). Opening end-of-life discussions: How to introduce Voicing My CHOiCES™, an advance care planning guide for adolescents and young adults. Palliative & Supportive Care, 13(3), 591–599.CrossRef
Zurück zum Zitat Zurca, A. D., Fisher, K. R., Flor, R. J., Gonzalez-Marques, C. D., Wang, J., Cheng, Y. I., & October, T. W. (2017). Communication with limited English-proficient families in the PICU. Hospital Pediatrics, 7(1), 9–15.CrossRef Zurca, A. D., Fisher, K. R., Flor, R. J., Gonzalez-Marques, C. D., Wang, J., Cheng, Y. I., & October, T. W. (2017). Communication with limited English-proficient families in the PICU. Hospital Pediatrics, 7(1), 9–15.CrossRef
Metadaten
Titel
Ethical Issues in Providing End-of-Life Cancer Care for Transitional-Aged Youth
verfasst von
Natacha D. Emerson
Brenda Bursch
Publikationsdatum
18.02.2021
Verlag
Springer US
Schlagwörter
Oncology
Care
Erschienen in
Journal of Clinical Psychology in Medical Settings / Ausgabe 4/2021
Print ISSN: 1068-9583
Elektronische ISSN: 1573-3572
DOI
https://doi.org/10.1007/s10880-021-09764-6

Weitere Artikel der Ausgabe 4/2021

Journal of Clinical Psychology in Medical Settings 4/2021 Zur Ausgabe