Partnering With Patients and Caregivers in Cancer Care: Lessons From Experiences With Transgender, Hispanic, and Pediatric Populations

Author:

Katz Naomi T.12345ORCID,Alpert Ash B.678,Aristizabal M. Paula910,McDaniels-Davidson Corinne1011,Sacks Bronwyn H.112,Sanft Tara13,Chou Calvin L.1415,Martinez Maria Elena1016

Affiliation:

1. Victorian Paediatric Palliative Care Program, Royal Children's Hospital, Melbourne, VIC, Australia

2. Parkville Integrated Palliative Care Service, Peter MacCallum Cancer Centre, Melbourne, VIC, Australia

3. Palliative Care Service, Alfred Health, Melbourne, VIC, Australia

4. Department of Paediatrics, University of Melbourne, Melbourne, VIC, Australia

5. Faculty of Medicine, Nursing and Health Sciences, Monash University, Melbourne, VIC, Australia

6. Center for Gerontology & Healthcare Research, Brown University School of Public Health, Providence, RI

7. Department of Health Services Policy & Practice, Brown University School of Public Health, Providence, RI

8. Department of Public Health Sciences, University of Rochester Medical Center, Rochester, NY

9. Department of Pediatrics, Division of Hematology, University of California and Peckman Center for Cancer and Blood Disorders, Rady Children's Hospital San Diego, CA

10. Moores Cancer Center, University of California, San Diego, CA

11. School of Public Health, San Diego State University, San Diego, CA

12. Murdoch Children's Research Insitute, Melbourne, VIC, Australia

13. Yale Cancer Center, Yale School of Medicine, New Haven, CT

14. Department of Medicine, University of California, San Francisco, San Francisco, CA

15. Veterans Affairs Helathcare System, San Francisco, CA

16. Herbert Wertheim School of Public Health and Human Longevity Science, University of California, San Diego, CA

Abstract

A cancer diagnosis thrusts patients and caregivers into a foreign world of health care with systems, protocols, and norms that can leave little room for individual needs and circumstances. Quality and efficacious oncology care requires clinicians to partner with patients and caregivers to understand and incorporate their needs, values, and priorities into information sharing, decision making, and care provision. This partnership is necessary for effective patient- and family-centered care and access to individualized and equitable information, treatment, and research participation. Partnering with patients and families also requires oncology clinicians to see that our personal values, preconceived ideas, and established systems exclude certain populations and potentially lead to poorer care for all patients. Furthermore, inequitable access to participation in research and clinical trials can contribute to an unequal burden of cancer morbidity and mortality. Leveraging the expertise of the authorship team with transgender, Hispanic, and pediatric populations, this chapter provides insights and suggestions for oncology care that are applicable across patient populations to mitigate stigma and discrimination and improve the quality of care for all patients.

Publisher

American Society of Clinical Oncology (ASCO)

Subject

General Medicine

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