How to Select a Patient Advocate: Where to Begin

When choosing a patient advocate, consider the following important points:

1. Ask your doctor or the facility where you’re getting treated if there is someone you can talk with who can help you.
2. Focus on finding someone you trust who is willing to work on your behalf, and who will work well with your doctors, nurses and other members of your health care team.
3. Pick an advocate who will be assertive and has good communication skills.

Family or Friends: Most Common Patient Advocate

The most common patient advocate is a family member or friend. These loved ones may be willing to help, but often need advice on how to be most useful to you.

Professional Patient Advocates: What You Should Know

One type of patient advocate is a paid professional. Hospitals may have professional patient advocates, who may also be called patient navigators. Some hospitals use social workers, nurses or chaplains to advocate for patients. These professionals know the system and may be able to help you cut through red tape. When patients enter the hospital, the hospital is required to give each patient a copy of the Patient Bill of Rights. This usually provides the contact information for a patient advocate. Professional patient advocates can provide patients information about their disease, access to care and getting into clinical trials. They work with other members of the care team to coordinate the patient’s care.

A professional navigator can help identify challenges to care, identify possible solutions with patients and their families, identify financial assistance and help patients identify important questions to ask their doctors. Some patient navigators work for community-based organizations, or work independently and are hired on a freelance basis directly by patients. Independent patient advocates may focus on one particular disease area, such as cancer. Others focus on billing and health insurance claims. They may help to coordinate care among several providers, accompany patients to medical appointments or sit with them in the hospital.

Two resources for finding patient advocates are the National Association of Healthcare Advocacy, which requires members to sign a code of ethics, and the Alliance of Professional Health Advocates, which requires participants to have professional liability insurance.

What You Should Ask Professional Patient Advocates

Questions you may want to ask a patient advocate you are considering hiring include:

• Have you handled other cases similar to mine?
• Do you specialize in a particular area, such as dealing with insurance or billing, or helping patients understand treatment options?
• What do you charge for your services?
• Do you have references?

Nurse Navigators: Who They Are

Nurse navigators are often employed by hospital systems and cancer clinics. These professional nurses help patients through the care system, from diagnosis through treatment and recovery. A nurse navigator assigned to you by a hospital or clinic may not be able to help coordinate care with doctors outside that system, however.

For-Profit or Employer-Based Patient Advocates

For-profit patient advocates are part of a health care company that usually contracts with employers, usually at no cost to the patient. These advocates may be part of your workplace employee assistance program that can help with health care issues. The services vary and are often provided over the phone. Some organizations have care managers that can meet with patients and their health care providers.

When choosing an advocate, first decide what you want the person to help you with, and what you want to handle yourself. Common ways that an advocate can help you is by:

• Accompanying you to medical appointments and treatments
• Spelling out your options for hospitals, doctors, tests and treatment choices
• Helping you get information
• Asking questions and writing down answers
• Ensuring your wishes are carried out if you are not able to do so yourself

Before you engage an advocate, decide how involved you want this person to be in your treatment decisions, and how much you are willing to let them know about your condition. Talk to your doctor and health care team and let them know this person will be your advocate, and how you want them involved. Also let the rest of  your family know the role you have chosen for your advocate.

Common Medical Forms Involving Patient Advocates

There are a number of forms that patients and their advocates should have on file, including:

• HIPAA release form. This allows advocates to speak to providers and receive information about the patient’s condition, and to have access to the patient’s medical records. (Here is an example).
• Designation of a personal advocate form. This confirms and records the patient’s intention to name a personal advocate. Some states, such as Michigan, have a required form; your hospital patient advocate should be able to tell you if your state requires such a form.
• Advance directives. These are written statements of a person’s wishes regarding medical treatment, made to ensure those wishes are carried out should the person be unable to communicate them to a doctor. Advance directives can take many forms, and laws about them are different in each state. CaringInfo, a national consumer education and engagement program of the National Hospice and Palliative Care Organization, allows you to download state-specific advance directives.

Advance directives include:

• Health Care Proxy  or Medical Power of Attorney: This form names a legal agent who will make your medical decisions if you are unable to do so. The form is signed by the patient. A copy (not the original) should be with the patient when they enter the hospital.
• Living Will: This document tells the medical power of attorney designee what to do if you become incapacitated. This form needs to be completed and signed before hospitalization.
• DNR (Do Not Resuscitate) Form: This confirms that you do not want to have heart function or breathing restarted. These forms must be obtained and signed by a physician.