Health care providers aim to give the best care for their patients. However, they may not know everything about you. The treatment that fits one person may not fit another. Making sure your care fits your beliefs, values and traditions is important.
Differences in Health Care Treatment
People with cancer may experience differences in access to care or the quality of care they receive. These differences can be related to race and ethnicity, age, gender identity, sexual orientation, physical ability, socioeconomic status, developmental ability, immigration status, location and more. These are called “health care disparities.” Each of them can impact the way a person receives care. A person can be affected by more than one disparity at a time.
Recognizing Health Care Disparities
Health care disparities can occur in different ways. Here are a few examples:
A clinic where most of the population speaks only English may not have much experience with other languages. A patient at this clinic who does not speak English may have trouble communicating with their health care team.
A provider may not understand why a patient is reluctant to pursue chemotherapy. Medically it may be the “best” option, but for that person, the impact of hair loss in their culture is powerful.
A patient may miss important appointments. This may cause a doctor to think they are not committed to their treatment. Instead, they may have financial or other reasons why they cannot easily travel, such as taking care of someone else.
A health care team may be unwilling to use the correct pronouns and names for a transgender patient. That patient may have trouble getting the proper forms of care. This may include not being eligible for prostate cancer screening despite having an intact prostate. Or, because of the sex listed in their insurance, they may have difficulty getting breast cancer screening.
A transgender person may face discrimination from their health care team unwilling to use preferred pronouns and chosen name. They may also not be covered for prostate screening, despite having an intact prostate, or breast cancer screening, due to the gender listed by their insurance.
The concept of “cultural humility” is becoming more important in the health care field. This concept means that health care providers should be open to their patients’ needs and priorities. They should question their own assumptions about care and treatment. Open discussion about traditions or beliefs can positively affect what care is most appropriate for you. These dialogues may help you find ways around financial, physical or other difficulties.
Advocate for Yourself
You do not have to wait for your health care team to start these conversations. No medical decision should be made without your full consent and understanding. You can start advocating for yourself or your loved one at any time during the cancer experience.
Being an advocate for yourself means expressing your desires and needs. Your health care team has the same goal as you do: the best possible care and quality of life. Health care professionals typically focus on the best medical and scientific course of action. However, your beliefs and values are equally important. You have the right and the power to make your wishes known.
Communicating With Your Health Care Team
A doctor may not have the full picture of a patient’s life and needs. For example, a provider might suggest pursuing an aggressive, shorter form of chemotherapy that leads to nausea and fatigue. However, that patient may need to continue to work. A longer course of treatment with fewer side effects would help them keep their job.
For these reasons, open and respectful communication is vital. Doctors are focused on treating the cancer. While they are experts in medicine, you are the expert on your needs. You have the right to have a full understanding of the options available.
You are not required to accept a decision about your treatment that you disagree with or do not understand. Your doctors can find other treatment plans or schedules that work for you.
It is only by speaking up that your needs can be clear. If you find that you cannot communicate effectively with your health care team, try to find alternatives. The hospital may have a patient navigator or hospital social worker on staff. They can act as an advocate on your behalf. You may also consider having a loved one go with you to appointments for support. They could keep notes during appointments and remember questions to ask. A loved one can also help speak with the doctor, especially if there is a language barrier.
Active communication can lead to better-informed treatment decisions. It can improve your quality of life before, during and after treatment. Most of all, it can help you feel safe in a trusted environment.
How CancerCare Can Help
CancerCare has oncology social workers who can help. They are able to help you communicate with your health care team. This can include practicing conversations with your doctors or nurses and ways to discuss your needs. They can also help you find resources and overcome barriers to care.
CancerCare provides case management across the country, support groups online and on the telephone, counseling in New York and New Jersey and more.
Edited by Angelique Caba, LSCW-R, and Yvette Colón, PhD, BCD, LMSW