Your Own Best Advocate: How to be an Active Participant in Your Care

Adapted from a talk at The SLE Workshop at Hospital for Special Surgery

Patients with lupus can face a multitude of concerns: learning about treatment options, getting the best healthcare possible, negotiating with insurers, and coping with the disruption disease brings to their personal and professional lives. "A diagnosis or flare-up of lupus can present a crisis situation for both patients and families," explains Lydia Dalley, MA, Manager, Patient Services at HSS. "It's important to know that, in addition to your doctors, there are other professionals who can help, both in the hospital and in the outpatient setting."

Patient advocates provide expertise in a number of areas, including ensuring access to care, protecting patients' rights in the hospital setting, providing ideas for better communication with health care professionals, and negotiating insurance issues. For people with lupus who wish to become more involved on a political basis, patient advocates can provide information on how to do so.

How Can I Improve Communications with My Doctor?

Building a relationship based on trust and open communication with your doctor is of utmost importance, according to Ms. Dalley. Unfortunately, in the age of managed care, many physicians may feel pressured to limit the time spent with each patient. To help make the most of your office visits, it's important to both ask the right questions, and to share the information that will help your doctors give you better care. (The following guidelines originally appeared in an HSS Education Division flyer, Improving Patient-Doctor Communications. This piece was created and distributed in recognition of 2004 National Public Health Week. The content is based on frequently asked program participant questions and the National Institutes of Health booklet, Talking With Your Doctor: A Guide for Older People.[1] The full NIH pamphlet may be obtained at no cost by visiting Look for the guide by title or by requesting NIH Publication No. 02-3452.)

5 Questions Patients Should ASK Their Doctor(s)

  1. What is my diagnosis (in layman's terms) and how can I learn more about it?
  2. Do you have any reading material or are there any support groups or community services that might help me understand my symptoms/condition?
  3. Are there any risks associated with a particular treatment? What are the advantages and disadvantages of the available treatments?
  4. Do I have any limitations or directions to follow as a result of my condition or treatment?
  5. When calling for an appointment: What insurance plans are accepted and what are my payment responsibilities?

Top 5 Facts Patients Should SHARE With their Doctor(s)

  1. Medical history, including past illnesses or operations, medical conditions that run in the family and all symptoms (new and recurring).
  2. List of medications, prescription and over-the-counter and any alternative treatments or supplements you take.
  3. Your habits or lifestyle—include those activities you enjoy or would like to become involved in.
  4. Your honesty…don't be embarrassed or uncomfortable about discussing personal or sensitive topics.
  5. Questions about information you found in the media or from the internet, related to your symptoms or diagnosis.

"When a doctor sees that you're interested in what's going on with your disease, they become interested in exploring this further with you." adds Ms. Dalley.

She also advises patients to find out the best way to get information from your doctor. Is he or she able to respond in a timely way to a telephone inquiry? Is a written letter preferable? Or is your doctor accessible by email? Some physicians find this to be a fast and convenient way to communicate with their patients.

How Can I Prepare for a Hospital Stay?

If your treatment requires a hospital stay, you can help prepare yourself and your family in a number of ways. The free brochure, Your Rights as a Hospital Patient in New York State, provides information on a number of relevant matters, and is available at HSS in the admissions office. The document can also be found on the Department of Health website at Click on "Search" and enter "Your Rights." Two particularly useful sections are the glossary, which explains terms frequently used by hospital personnel, and the copy of the Patients' Bill of Rights, which details all of your rights in the hospital setting. If any of this information is unclear, ask for assistance from a patient advocate. This booklet is available in English or Spanish. At HSS, interpreters are also available for native speakers of other languages.

Your Rights as a Hospital Patient in New York State also explains the Health Care Proxy Law. This law allows you to select an individual who, if you cannot do so yourself, will make health care decisions for you. You may also choose an alternate agent to act on your behalf if your health care proxy agent is not available. (This differs from a living will, which is prepared with an attorney, and defines more specific wishes regarding health care. You may wish to fill out both forms.) In New York State, only a health care proxy has legal standing.

Most patients are asked to fill out a health care proxy form when they are admitted to the hospital. "However," says Ms. Dalley, "it is a good idea to fill one out in advance. Doing so allows you the time to think about your medical care and to discuss various scenarios with your designated proxy. Once you have filled out the form, keep one with you to bring to the hospital. It's also a good idea to keep one at your physician's office."

Another way to prepare for hospitalization—and for a visit to any new physician—is to maintain a list all medications, previous tests and treatments, allergies, and insurance information. This will allow for easy recall when talking to anyone taking a medical history or filling out forms. You are entitled to receive a free copy of your medical records from any physician who has treated you in the outpatient setting. Hospitals are permitted to charge a fee for copies of patient records, but may not refuse the records if cost is an issue. Results of blood or other laboratory tests must be obtained through a physician.

In advance of hospitalization, you may wish to call on a patient advocate to schedule a tour of where you'll be staying. He or she can help you get to know some of the people who may be caring for you, such as nurse managers and social workers. If you wish to receive visits from a hospital chaplain, you can plan this ahead of time.

Coping with Lupus Every Day

Whether the challenges you face involve your treatment, your insurance coverage, or other matters, Ms. Dalley urges people with lupus to ask for the help they need and to be persistent. "You don't have to cope with these issues alone."

People with lupus can also take advantage of two peer-based services offered by HSS and made possible through funding by Rheuminations, Inc. LupusLine is a telephone counseling program that can be reached at 212-606-1952 or toll-free at 1-866-375-1427. During an initial call, the program coordinator determines if the caller might benefit from the service, and if so, matches the caller with a volunteer with similar experience.

Spanish-speaking patients can also get peer support through Charla de Lupus (Lupus Chat). This peer health education program is also staffed by volunteers and is available on site at several New York City hospitals, including HSS. For more information, call 212-606-1958 or 1-866-812-4494 (toll free from outside New York City.)

"I'd like people with lupus to think of their lives as full of possibilities to make new connections," says Ms. Dalley. "Use the internet, use the patient advocacy resources, be informed, get involved in the community or political arena, and partner with others to give yourself the best outcome."

Learn more about HSS' SLE Workshop

1. Talking with your Doctor: A Guide for Older People. The National Institute on Aging, National Institutes of Health. NIH Publication No. 02-3452. March 2002.

Summary of a presentation given at The SLE Workshop, a free support and education group held monthly for people with lupus and their families/friends. Summary prepared by Nancy Novick, reviewed by Roberta Horton, LCSW, ACSW.


Lydia Dalley, MA
Manager, Patient Services
Hospital for Special Surgery

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