What are We Asking Patients to Do? A Critical Ethical Review of the Limits of Patient Self-Advocacy in the Oncology Setting

Abstract

Increasing emphasis on patient self-management, including having patients advocate for their needs and priorities, is generally a good thing, but it is not always wanted or attainable by patients. The aim of this critical ethical review is to deepen the current discourse in patient self-advocacy by exposing various situations in which patients struggle to self-advocate. Using examples from oncology patient populations, we disambiguate different notions of self-advocacy and then present limits to the more demanding varieties (i.e., health-related, trust-based, and psychological); we argue that these limits create ethical dilemmas with respect to whether it is always desirable to encourage patients to self-advocate. We conclude that self-advocacy can be both under and overrated with respect to how much it benefits the patient with cancer, with many instances being indeterminate. Ultimately, providers must understand the patient's perspective relative to the challenges they are experiencing and work with them to meet their needs.

KEYWORDS:

• Self-advocacy
• ethics
• self-management
• patient participation
• neoplasm

Data availability statement

Not applicable.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

This work was supported by the National Cancer Institute; National Institutes of Health: [grant number R37 CA262025].

Notes on contributors

Daniel A. Wilkenfeld

Dr. Daniel A. Wilkenfeld is an Assistant Professor at the University of Pittsburgh School of Nursing with expertise in philosophy and bioethics.

Teresa Hagan Thomas

Dr. Teresa Hagan Thomas is an Assistant Professor at the University of Pittsburgh School of Nursing with expertise in oncology and patient self-advocacy.