Every race and ethnicity is impacted by cancer, but its effects can be magnified for those in certain groups due to access to health care, support and other related issues or concerns. For those who identify as Black, Indigenous and People of Color (BIPOC), advocating for your needs may improve the quality of your care and relationship with your health care team.
What Are Health Care Disparities?
Health care disparities refer to preventable differences in opportunities for optimal health due to race and ethnicity, sexuality and gender identity, socioeconomic status and more Some challenges are built into the structure of systems and organizations. For example, according to a study released by the U.S. Census in 2018, people of Latino descent had the lowest rate of overall health insurance coverage and the lowest rate of private coverage, which may limit their access to care and therefore impact their cancer experience.
On a more personal scale, providers may apply their own assumptions about beliefs, values, family structures, personal relationships and other qualities. For instance, a provider may insist on discussing end-of-life care with a patient without understanding that talking about death and dying may be considered taboo in that patient’s culture. Current cultural conversations are drawing more attention to the existence of health care disparities, especially those rooted in racial discrimination, and ways to create more equitable systems.
The Value of Your Identity
Your cultural and racial and ethnic backgrounds are vital to who you are. Even with a comprehensive health insurance plan that covers most or all of your medical expenses, you may interact with health care providers who do not immediately understand your cancer experience, your quality-of-life priorities and even your interest in clinical trial participation.
Your health care team is composed of experts in medical care, and they share your goal of providing the best care possible. However, their focus on medical issues may not account for your individual beliefs, values and traditions, though an approach called “cultural humility,” an openness to each patient’s distinct identity and cultural traditions, is growing within the medical profession.
It is important to voice any concerns you may have about treatment decisions, potential side effects, financial concerns, family responsibilities and end-of-life issues. You can speak to your health care team about wanting to adjust your treatment so you can continue to work or study, pursue physical activities or attend important events like weddings and graduations. Based on your cultural beliefs, you may wish to avoid scheduling treatment or surgeries at certain times of the day or week or during holy times of the year.
The Role of Self-Advocacy
You are a consumer of health care and are not required to agree to any procedure or treatment that you do not want or understand. Be clear and open about your comfort levels and needs. It is your right to ask for the best care for you or your loved one. You have control over decisions about your body and your care, and you have the power and the right to advocate for yourself at any time.
When speaking with your health care team, you can always ask a doctor or other provider to slow down or repeat themselves. If necessary, you can request an interpreter or find other means of communication. During the conversation, you should feel comfortable asking questions and informing your team about any discomfort you have with their medical recommendations. Treatment should be appropriate not just for your cancer type and stage, but for your values, beliefs, lifestyle and cultural traditions.
Consider having a friend, loved one or patient advocate accompany you to your appointments for support. This companion can also help advocate for your needs. In addition to members of your community, you may find support from organizations dedicated to experiences like yours. This includes Sister’s Network, dedicated to African American women with breast cancer, and LatinaSHARE, which helps Latina women with breast and ovarian cancer.
Support groups can also provide connection to others who have had similar experiences. Groups can focus on different commonalities, including cancer type, age group, role (such as caregiver groups) or special populations like Spanish speakers, young adults or those who identify as LGBTQ+. CancerCare offers a variety of live and online support groups throughout the year, which may be found on our site or by calling our Hopeline.
The Value of an Oncology Social Worker
CancerCare has professional oncology social workers on staff who are dedicated to supporting you throughout your cancer experience. They can provide guidance on how to speak to the members of your treating health care team, navigate the health care system or other advice for integrating your cultural, religious or other beliefs into the fabric of your care.
Edited by Angelique Caba, LSCW-R and Yvette Colón, PhD, BCD, LMSW