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



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).


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.


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.


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.


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



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


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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

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