Being a Patient Advocate: A Guide for Minority Families

If your loved one has a complex or chronic disease, finding your way through the health care maze can be a daunting task. And if you are a member of a racial or ethnic minority, this can be even harder. Minorities often suffer and die from disease at higher rates than non-Hispanic whites.

There are three main points that the health care system fails people of color–access to care, quality of care, and effectiveness of treatments. Patient advocates can help address several of these.

Access

Access is perhaps the largest problem–minorities are more likely to be uninsured or underinsured than whites. Fortunately, this is the best recognized issue, and there are often community resources to help. Your local department of social services, health care clinic, or hospital should be able to provide information on what is available. Sometimes, it is possible to find doctors who will reduce their fees for those with difficulty paying.

Be aware that many doctors forget to consider the patient’s financial situation when prescribing. Ask if generics are available, or whether medications are covered under one of your local pharmacy’s lower price deals.

Quality of Care

Quality of care is a trickier problem. Studies have shown that minorities are less likely to get the interventions they need. For example, a minority patient is less likely to receive adequate medication for pain than a white patient. The reasons for this depend on multiple factors, including provider bias and cultural differences. For instance, with pain, some groups may tend to under-report pain or to describe pain in non-specific ways, or providers may be reluctant to prescribe opiates.

Advocates push the odds more toward the minority patient’s favor by participating in the decision-making process. If the doctor doesn’t seem to understand that your loved one is hurting, you can clearly communicate this information and push for solutions.

You don’t have to be a doctor to be an advocate. Here are some strategies you can use to get your loved one the best possible care

  • Identify the gatekeepers. Every health care organization has people who control access to providers. Generally, these people are the people you will have the most contact with-your loved one’s nurses in a doctor’s office or hospital, or nursing assistants in a long-term care facility. Be aware of shift changes.
  • Cultivate relationships with staff
  • Ask questions and keep asking until you understand your loved one’s diagnosis, prognosis, treatment options, and care routine. Ask about how the patient’s medications work and any side effects. You should also ask about possible drug interactions, as this is a common mistake doctors make, especially when there are multiple providers writing prescriptions.
  • Educate yourself about your loved one’s condition. If you need help in finding resources, ask.
  • Once you have all agreed on a treatment plan, make sure your loved one is receiving the care ordered.
  • Trust your intuition. If something seems wrong, it may well be. If you are not satisfied, get a second opinion.
  • Learn who to talk to and how to contact them in case of problems.

Effectiveness of Treatments

Sometimes, your loved one may be receiving standard treatment, but it may not be working well. There can be many reasons for this, most of them having to do with the severity of the disease and other illnesses your loved one may have at the same time. If your loved one has both diabetes and heart disease, treatment for one can be complicated by the other. However, research also shows that in some instances medications may affect people differently depending on genetic background (which race can provide some clues to).

For example, gefitinib is a drug that works better than other medications for certain types of cancer in most people with Japanese heritage. It has the same effect on American patients (of all backgrounds) with a specific genetic mutation, but may not work as well as other treatments for the majority of the US population.

Psychoactive drugs are particularly sensitive to genetic differences. African Americans and Native Americans may experience more side effects–and the drugs may not work as well–with these medications than other populations.

If you feel that the medications your loved one has been given are not working, or if the side effects are intolerable, ask your doctor if more appropriate drugs are available.

You’re the Expert

Though doctors and nurses may have specialized knowledge about disease, you are the expert on your loved one. And you can make a big difference in their care.