Advertisement

Supportive Care in Cancer

, Volume 27, Issue 2, pp 669–675 | Cite as

Family caregiver descriptions of stopping chemotherapy and end-of-life transitions

  • S. A. NortonEmail author
  • M. N. Wittink
  • P. R. Duberstein
  • H. G. Prigerson
  • S. Stanek
  • R. M. Epstein
Original Article

Abstract

Purpose

The purpose of this study was to describe family caregivers’ perspectives of the final month of life of patients with advanced cancer, particularly whether and how chemotherapy was discontinued and the effect of clinical decision-making on family caregivers’ perceptions of the patient’s experience of care at the end of life (EOL).

Methods

Qualitative descriptive design using semi-structured interviews collected from 92 family caregivers of patients with end-stage cancer enrolled in a randomized clinical trial. We used a phased approach to data analysis including open coding, focused coding, and within and across analyses.

Results

We identified three patterns of transitions characterizing the shift away from active cancer treatment: (1) “We Pretty Much Knew,” characterized by explicit discussions about EOL care, seemingly shared understanding about prognosis and seamless transitions from disease-oriented treatment to comfort-oriented care, (2) “Beating the Odds,” characterized by explicit discussions about disease-directed treatment and EOL care options, but no shared understanding about prognosis and often chaotic transitions to EOL care, and (3) “Left to Die,” characterized by no recall of EOL discussions with transitions to EOL occurring in crisis.

Conclusions

As communication and palliative care interventions continue to develop to improve care for patients with advanced cancer, it is imperative that we take into account the different patterns of transition and their unique patient and caregiver needs near the end of life. Our findings reveal considerable, and potentially unwarranted, variation in transitions from active treatment to death.

Keywords

Cancer Caregiver Communication Decision-making End of life Palliative care Prognosis 

Notes

Funding

This study was funded by grants received from the National Institutes of Health, National Cancer Institute: R01CA1404191 and R01CA168387.

References

  1. 1.
    Steinhauser KE, Christakis NA, Clipp EC, McNeilly M, McIntyre L, Tulsky JA (2000) Factors considered important at the end of life by patients, family, physicians, and other care providers. JAMA 284(19):2476–2482CrossRefGoogle Scholar
  2. 2.
    Clayton JM, Butow PN, Tattersall MH (2005) The needs of terminally ill cancer patients versus those of caregivers for information regarding prognosis and end-of-life issues. Cancer 103(9):1957–1964CrossRefGoogle Scholar
  3. 3.
    Clayton JM et al (2007) Clinical practice guidelines for communicating prognosis and end-of-life issues with adults in the advanced stages of a life-limiting illness, and their caregivers. Med J Aust 34:81–93Google Scholar
  4. 4.
    Wright AA, Zhang B, Ray A, Mack JW, Trice E, Balboni T, Mitchell SL, Jackson VA, Block SD, Maciejewski PK, Prigerson HG (2008) Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment. JAMA 300(14):1665–1673CrossRefGoogle Scholar
  5. 5.
    Pirl WF, Greer JA, Irwin K, Lennes IT, Jackson VA, Park ER, Fujisawa D, Wright AA, Temel JS (2015) Processes of discontinuing chemotherapy for metastatic non-small-cell lung cancer at the end of life. J Oncol Pract Am Soc Clin Oncol 11(3):e405–e412CrossRefGoogle Scholar
  6. 6.
    de Haes H, Koedoot N (2003) Patient centered decision making in palliative cancer treatment: a world of paradoxes. Patient Educ Couns 50(1):43–49CrossRefGoogle Scholar
  7. 7.
    Wright AA, Keating NL, Ayanian JZ, Chrischilles EA, Kahn KL, Ritchie CS, Weeks JC, Earle CC, Landrum MB (2016) Family perspectives on aggressive cancer care near the end of life. JAMA 315(3):284–292CrossRefGoogle Scholar
  8. 8.
    Mack JW, Weeks JC, Wright AA, Block SD, Prigerson HG (2010) End-of-life discussions, goal attainment, and distress at the end of life: predictors and outcomes of receipt of care consistent with preferences. J Clin Oncol 28(7):1203–1208CrossRefGoogle Scholar
  9. 9.
    Weeks JC et al (2012) Patients’ expectations about effects of chemotherapy for advanced cancer. N Engl J Med 367(17):1616–1625CrossRefGoogle Scholar
  10. 10.
    Mack JW, Smith TJ (2012) Reasons why physicians do not have discussions about poor prognosis, why it matters, and what can be improved. J Clin Oncol 30(22):2715–2717CrossRefGoogle Scholar
  11. 11.
    Wolff JL, Roter DL (2011) Family presence in routine medical visits: a meta-analytical review. Soc Sci Med 72(6):823–831CrossRefGoogle Scholar
  12. 12.
    Eggly S, Penner LA, Greene M, Harper FWK, Ruckdeschel JC, Albrecht TL (2006) Information seeking during “bad news” oncology interactions: question asking by patients and their companions. Soc Sci Med 63(11):2974–2985CrossRefGoogle Scholar
  13. 13.
    Street RL, Gordon HS (2008) Companion participation in cancer consultations. Psychooncology 17(3):244–251CrossRefGoogle Scholar
  14. 14.
    Given BA, Given CW, Kozachik S (2001) Family support in advanced cancer. CA Cancer J Clin 51(4):213–231CrossRefGoogle Scholar
  15. 15.
    Epstein RM et al (2016) Effect of a patient-centered communication intervention on oncologist-patient communication, quality of life, and health care utilization in advanced Cancer: the VOICE randomized clinical trial. JAMA Oncol 3:92–100Google Scholar
  16. 16.
    Hoerger M, Epstein RM, Winters PC, Fiscella K, Duberstein PR, Gramling R, Butow PN, Mohile SG, Kaesberg PR, Tang W, Plumb S, Walczak A, Back AL, Tancredi D, Venuti A, Cipri C, Escalera G, Ferro C, Gaudion D, Hoh B, Leatherwood B, Lewis L, Robinson M, Sullivan P, Kravitz RL (2013) Values and options in cancer care (VOICE): study design and rationale for a patient-centered communication and decision-making intervention for physicians, patients with advanced cancer, and their caregivers. BMC Cancer 13(1):188CrossRefGoogle Scholar
  17. 17.
    Miles, M.B., A.M. Huberman, and J. Saldaña, Qualitative data analysis : a methods sourcebook. 3rd ed. 2014, Thousand Oaks, Califorinia: SAGE Publications, Inc. xxiii, 381 pagesGoogle Scholar
  18. 18.
    Muhr T (2013) ATLAS/ti 7.0 use’s manual and reference. Scientific Software Development GmbH, BerlinGoogle Scholar
  19. 19.
    Saldaña J (2013) The coding manual for qualitative researchers, 2nd edn. SAGE Publications, Los AngelesGoogle Scholar
  20. 20.
    Maxwell JA (2012) Qualitative research design: an interactive approach, vol Vol. 41. Sage, Thousand OaksGoogle Scholar
  21. 21.
    Street RL Jr, Makoul G, Arora NK, Epstein RM (2009) How does communication heal? Pathways linking clinician-patient communication to health outcomes. Patient Educ Couns 74(3):295–301CrossRefGoogle Scholar
  22. 22.
    Parker S, Clayton JM, Hancock K, Walder S, Butow P, Carrick S, Currow D, Ghersi D, Glare P, Hagerty R, Tattersall M (2006) Communicating prognosis and issues surrounding end of life (EOL) in adults in the advanced stages of a life-limiting illness: a systematic review. NHMRC Clinical Trials Centre and the University of Sydney, CamperdownGoogle Scholar
  23. 23.
    Glare PA, Sinclair CT (2008) Palliative medicine review: prognostication. J Palliat Med 11(1):84–103CrossRefGoogle Scholar
  24. 24.
    Epstein RM, Street RL Jr (2011) Shared mind: communication, decision making, and autonomy in serious illness. Ann Fam Med 9(5):454–461CrossRefGoogle Scholar
  25. 25.
    Quill TE, Cassel CK (1995) Nonabandonment: a central obligation for physicians. Ann Intern Med 122(5):368–374CrossRefGoogle Scholar

Copyright information

© Springer-Verlag GmbH Germany, part of Springer Nature 2018

Authors and Affiliations

  1. 1.School of NursingUniversity of RochesterRochesterUSA
  2. 2.Department of Medicine, Division of Palliative CareUniversity of RochesterRochesterUSA
  3. 3.Department of Family MedicineUniversity of RochesterRochesterUSA
  4. 4.Department of PsychiatryUniversity of RochesterRochesterUSA
  5. 5.Department of MedicineWeill Cornell MedicineNew YorkUSA
  6. 6.Wilmot Cancer CenterUniversity of RochesterRochesterUSA

Personalised recommendations