Barriers to Optimal End-of-Life Care for Adolescents and Young Adults With Cancer: Bereaved Caregiver Perspectives

Authors: Jennifer W. Mack MD, MPH1,2,3, Erin R. Currie PhD, RN, CPLC4, Vincent Martello BA5, Jordan Gittzus BS2,6, Asisa Isack BA2, Lauren Fisher MPH2, Lisa C. Lindley PhD7, Stephanie Gilbertson-White PhD, APRN-BC8, Eric Roeland MD9, and Marie Bakitas DNSc, CRNP4
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  • 1 Department of Pediatric Oncology, and
  • | 2 Division of Population Sciences, Center for Outcomes and Policy Research, Dana-Farber Cancer Institute, Boston, Massachusetts;
  • | 3 Division of Pediatric Hematology/Oncology, Boston Children’s Hospital, Boston, Massachusetts;
  • | 4 School of Nursing, University of Alabama at Birmingham, Birmingham, Alabama;
  • | 5 University of New England School of Osteopathic Medicine, Biddeford, Maine;
  • | 6 Tufts University School of Public Health, Boston, Massachusetts;
  • | 7 University of Tennessee, Knoxville College of Nursing, Knoxville, Tennessee;
  • | 8 Department of Nursing, University of Iowa, Iowa City, Iowa; and
  • | 9 Division of Palliative Care, Massachusetts General Hospital, Boston, Massachusetts.
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Background: Adolescents and young adults (AYAs; aged 15–39 years) with cancer frequently receive intensive measures at the end of life (EoL), but the perspectives of AYAs and their family members on barriers to optimal EoL care are not well understood. Methods: We conducted qualitative interviews with 28 bereaved caregivers of AYAs with cancer who died in 2013 through 2016 after receiving treatment at 1 of 3 sites (University of Alabama at Birmingham, University of Iowa, or University of California San Diego). Interviews focused on ways that EoL care could have better met the needs of the AYAs. Content analysis was performed to identify relevant themes. Results: Most participating caregivers were White and female, and nearly half had graduated from college. A total of 46% of AYAs were insured by Medicaid or other public insurance; 61% used hospice, 46% used palliative care, and 43% died at home. Caregivers noted 3 main barriers to optimal EoL care: (1) delayed or absent communication about prognosis, which in turn delayed care focused on comfort and quality of life; (2) inadequate emotional support of AYAs and caregivers, many of whom experienced distress and difficulty accepting the poor prognosis; and (3) a lack of home care models that would allow concurrent life-prolonging and palliative therapies, and consequently suboptimal supported goals of AYAs to live as long and as well as possible. Delayed or absent prognosis communication created lingering regret among some family caregivers, who lost the opportunity to support, comfort, and hold meaningful conversations with their loved ones. Conclusions: Bereaved family caregivers of AYAs with cancer noted a need for timely prognostic communication, emotional support to enhance acceptance of a poor prognosis, and care delivery models that would support both life-prolonging and palliative goals of care. Work to address these challenges offers the potential to improve the quality of EoL care for young people with cancer.

Submitted June 18, 2020; accepted for publication August 27, 2020. Published online February 11, 2021.

Author contributions: Study concept: Mack. Data collection: All authors. Data analysis: Mack, Martello, Gittzus, Isack, Fisher. Writing – original draft: Mack. Writing – review and editing: Currie, Martello, Gittzus, Isack, Fisher, Lindley, Gilbertson-White, Roeland, Bakitas.

Disclosures: The authors have not received any financial consideration from any person or organization to support the preparation, analysis, results, or discussion of this article.

Funding: Research reported in this article was supported by the NIH under award number R21 R21NR016580 (Dr. Mack) and by the Palliative Care Research Cooperative Group, funded by the National Institute of Nursing Research (U2CNR014637). Dr. Currie is supported by the National Palliative Care Research Center. Dr. Roeland is sponsored by the Cambia Health Foundation Sojourns Scholar Award.

Disclaimer: The content is solely the responsibility of the authors and does not necessarily represent the official views of the NIH.

Correspondence: Jennifer W. Mack, MD, MPH, Department of Pediatric Oncology, Dana-Farber Cancer Institute, 450 Brookline Avenue, Boston, MA 02215. Email: Jennifer_mack@dfci.harvard.edu
  • 1.

    Bleyer A . The adolescent and young adult gap in cancer care and outcome. Curr Probl Pediatr Adolesc Health Care 2005;35:182217.

  • 2.

    Bleyer A , O’Leary M , Barr R , eds. Cancer Epidemiology in Older Adolescents and Young Adults 15 to 29 Years of Age, Including SEER Incidence and Survival: 1975–2000. NIH Pub. No. 06-5767. Bethesda, MD: National Cancer Institute; 2006.

    • Search Google Scholar
    • Export Citation
  • 3.

    Weaver MS , Heinze KE , Bell CJ , et al. . Establishing psychosocial palliative care standards for children and adolescents with cancer and their families: an integrative review. Palliat Med 2016;30:212223.

    • Crossref
    • PubMed
    • Search Google Scholar
    • Export Citation
  • 4.

    Sansom-Daly UM , Wakefield CE , Patterson P , et al. . End-of-life communication needs for adolescents and young adults with cancer: recommendations for research and practice. J Adolesc Young Adult Oncol 2020;9:157165.

    • Crossref
    • Search Google Scholar
    • Export Citation
  • 5.

    Weaver MS , Heinze KE , Kelly KP , et al. . Palliative care as a standard of care in pediatric oncology. Pediatr Blood Cancer 2015;62(Suppl 5):S829833.

  • 6.

    Wein S , Pery S , Zer A . Role of palliative care in adolescent and young adult oncology. J Clin Oncol 2010;28:48194824.

  • 7.

    Pritchard S , Cuvelier G , Harlos M , et al. . Palliative care in adolescents and young adults with cancer. Cancer 2011;117(10 Suppl):23232328.

  • 8.

    Hinds PS , Drew D , Oakes LL , et al. . End-of-life care preferences of pediatric patients with cancer. J Clin Oncol 2005;23:91469154.

  • 9.

    Wiener L , Ballard E , Brennan T , et al. . How I wish to be remembered: the use of an advance care planning document in adolescent and young adult populations. J Palliat Med 2008;11:13091313.

    • Crossref
    • Search Google Scholar
    • Export Citation
  • 10.

    Lyon ME , Jacobs S , Briggs L , et al. . Family-centered advance care planning for teens with cancer. JAMA Pediatr 2013;167:460467.

  • 11.

    Lyon ME , Garvie PA , McCarter R , et al. . Who will speak for me? Improving end-of-life decision-making for adolescents with HIV and their families. Pediatrics 2009;123:e199206.

    • Crossref
    • PubMed
    • Search Google Scholar
    • Export Citation
  • 12.

    Wiener L , Zadeh S , Battles H , et al. . Allowing adolescents and young adults to plan their end-of-life care. Pediatrics 2012;130:897905.

  • 13.

    Friebert S , Grossoehme DH , Baker JN , et al. . Congruence gaps between adolescents with cancer and their families regarding values, goals, and beliefs about end-of-life care. JAMA Netw Open 2020;3:e205424.

    • Crossref
    • PubMed
    • Search Google Scholar
    • Export Citation
  • 14.

    Johnston EE , Alvarez E , Saynina O , et al. . End-of-life intensity for adolescents and young adults with cancer: a Californian population-based study that shows disparities. J Oncol Pract 2017;13:e770781.

    • Crossref
    • Search Google Scholar
    • Export Citation
  • 15.

    Mack JW , Chen LH , Cannavale K , et al. . End-of-life care intensity among adolescent and young adult patients with cancer in Kaiser Permanente Southern California. JAMA Oncol 2015;1:592600.

    • Crossref
    • Search Google Scholar
    • Export Citation
  • 16.

    Mack JW , Chen K , Boscoe FP , et al. . High intensity of end-of-life care among adolescent and young adult cancer patients in the New York State Medicaid program. Med Care 2015;53:10181026.

    • Crossref
    • Search Google Scholar
    • Export Citation
  • 17.

    Johnston EE , Bogetz J , Saynina O , et al. . Disparities in inpatient intensity of end-of-life care for complex chronic conditions. Pediatrics 2019;143:e20182228.

  • 18.

    Roeland EJ , Lindley LC , Gilbertson-White S , et al. . End-of-life care among adolescent and young adult patients with cancer living in poverty. Cancer 2020;126:886893.

    • Crossref
    • Search Google Scholar
    • Export Citation
  • 19.

    Krippendorff K . Content Analysis: An Introduction to Its Methodology, 2nd ed. Newbury Park, CA: SAGE Publications; 2004.

  • 20.

    Ruddick W . Hope and deception. Bioethics 1999;13:343357.

  • 21.

    Kodish E , Post SG . Oncology and hope. J Clin Oncol 1995;13:1817.

  • 22.

    Baile WF , Lenzi R , Parker PA , et al. . Oncologists’ attitudes toward and practices in giving bad news: an exploratory study. J Clin Oncol 2002;20:21892196.

  • 23.

    Delvecchio Good MJ , Good BJ , Schaffer C , et al. . American oncology and the discourse on hope. Cult Med Psychiatry 1990;14:5979.

  • 24.

    Lamont EB , Christakis NA . Prognostic disclosure to patients with cancer near the end of life. Ann Intern Med 2001;134:10961105.

  • 25.

    Mack JW , Fasciano KM , Block SD . Communication about prognosis with adolescent and young adult patients with cancer: information needs, prognostic awareness, and outcomes of disclosure. J Clin Oncol 2018;36:18611867.

    • Crossref
    • Search Google Scholar
    • Export Citation
  • 26.

    Lindley LC , Keim-Malpass J , Svynarenko R , et al. . Pediatric concurrent hospice care: a scoping review and directions for future nursing research. J Hosp Palliat Nurs 2020;22:238245.

    • Crossref
    • PubMed
    • Search Google Scholar
    • Export Citation
  • 27.

    Lindley LC . Health care reform and concurrent curative care for terminally ill children: a policy analysis. J Hosp Palliat Nurs 2011;13:8188.

  • 28.

    Mooney-Doyle K , Keim-Malpass J , Lindley LC . The ethics of concurrent care for children: a social justice perspective. Nurs Ethics 2019;26:15181527.

  • 29.

    Lindley LC , Edwards S , Bruce DJ . Factors influencing the implementation of health care reform: an examination of the Concurrent Care for Children provision. Am J Hosp Palliat Care 2014;31:527533.

    • Crossref
    • PubMed
    • Search Google Scholar
    • Export Citation
  • 30.

    Walter JK , Rosenberg AR , Feudtner C . Tackling taboo topics: how to have effective advanced care planning discussions with adolescents and young adults with cancer. JAMA Pediatr 2013;167:489490.

    • Crossref
    • Search Google Scholar
    • Export Citation
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