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Financial hardship for patients with cancer and caregivers at end of life in the USA: narrative review
  1. Marisa Martinez Salazar1,
  2. Nandita Khera2,
  3. Fumiko Chino3 and
  4. Emily Johnston4
  1. 1 School of Medicine, Mayo Clinic School of Medicine–Scottsdale Campus, Scottsdale, Arizona, USA
  2. 2 Mayo Clinic School of Medicine, Phoenix, Arizona, USA
  3. 3 Department of Radiation Oncology, Memorial Sloan Kettering Cancer Center, New York, New York, USA
  4. 4 Pediatrics, University of Alabama at Birmingham Heersink School of Medicine, Birmingham, Alabama, USA
  1. Correspondence to Dr Emily Johnston, Pediatrics, University of Alabama at Birmingham Heersink School of Medicine, Birmingham, AL 35233, USA; ejohnston{at}


Background Patients and their families face financial hardship during cancer treatment, which may intensify at end of life (EOL) due to increased symptoms and care needs. We undertook a narrative literature review to describe the current understanding of the causes, impacts and factors associated with financial hardship at EOL. We identify gaps in research, policy and clinical practice and propose steps to mitigate financial hardship for patients and caregivers at EOL.

Methods We conducted a Medline search to identify US studies since 2000 that examined EOL financial hardship for patients with cancer and their caregivers.

Results Twenty-seven adult and four paediatric studies met review criteria. Adults with cancer and their caregivers face significant financial hardship at EOL and in bereavement, especially due to employment changes and informal caregiving time costs. Financial hardship may be higher for younger caregivers and for patients who are uninsured, low income, rural, with high symptom burdens or with certain cancer types. The few paediatric studies showed high financial hardship and employment impact lasting well beyond a child’s death.

Conclusions There is limited literature examining financial hardship at EOL in the USA, especially in paediatrics. Priorities for future research include longitudinal studies in diverse populations of patients with cancer and informal caregivers using standardised financial hardship measures. Policies to address financial hardship at EOL, especially with hospice care, should include insurance coverage for family caregiving and medical leave policies. There is need for increased financial hardship screening at EOL and in bereavement and a need for financial navigation interventions.

  • Bereavement
  • Quality of life
  • Supportive care
  • Cancer
  • Hospice care
  • Terminal care

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  • Contributors NK and EJ conceptualised the work. MMS conducted data acquisition (including literature review) and drafted the manuscript. All authors analysed and interpreted the data, critically revised the manuscript, approved the final version submitted and agree to be accountable for all aspects of the work.

  • Funding FC is funded in part through the NIH/NCI Cancer Center Support Grant (P30 CA008748). NK has received honoraria from Optum for educational activities and Incyte for consulting.

  • Competing interests None declared.

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.