As a lupus patient, there may be times when your disease has such a powerful effect on your well-being that you may not feel capable of adequately managing your healthcare needs, especially when it comes to navigating the healthcare system. When and if this occurs, you may want to consider engaging the help of a patient advocate.
On the flip side, if you are a close friend or family member of a lupus patient and want to take part in or assist with your friend or family member’s healthcare needs, you might consider becoming a patient advocate.
Patient Advocates
Advocates are supporters, sponsors –- you might even say champions –- of the patient. They typically come in two varieties:
- Familial: In which a member of your family -– a spouse, sibling, parent, friend -– take on the role.
- Professional: Social workers, nurses and other professionals are often employed by hospitals to act on behalf of the patient. Called patient advocates or representatives, they are accessible to you and are there to help you. Ask your hospital of choice if they have advocates and how you can find out more information about their services.
In this article, we’ll focus more on familial patient advocates.
Selecting an Advocate
If you choose to become an advocate or are a patient considering nominating a family member your advocate, there are some attributes you’ll want to make sure your advocate possesses.
Make sure the person you select is a good communicator -– most importantly, that you communicate well with the person. Secondary is the advocate’s ability to communicate with doctors, hospitals and other healthcare entities, but that skill should be strong and assertive nonetheless.
The person you should select should have your complete trust, as well. And once you’ve selected your advocate, make sure you inform your healthcare provider. He should be aware and be supportive of your advocate’s involvement in your treatment.
An Advocate’s Duties
A patient advocate may be charged with a cadre of duties, from gathering information from doctors and hospitals to helping discuss and decide treatment options. As a patient, it is your job to decide what duties your patient advocate will have.
Some duties you might consider:
- Clarifying treatment and medical options.
- Gathering information.
- Asking specific questions.
- Note taking, to make sure all the appropriate information received from caregivers is captured and retained.
- Assuring your wishes are carried out when you cannot do that for yourself.
- Accompaniment to tests, appointments, treatments and procedures. You will want to get your doctor’s approval for this, but you should insist on it.
Some Thoughts for Advocates
If you have been selected to be someone’s patient advocate, understand that you are taking on a great responsibility to your friend or family member. To be the very best advocate you can be, consider some of these thoughts, from the American Association of Cancer Research:
- Make yourself available. Taking on the role of patient advocate can be time-consuming. But if you accept, you must be willing to make the time to do the job right.
- Have patience and understanding. Know that there will be many questions –- for the doctor and from the patient –- and you might be expected to understand it all. Have patience and understand that you can circle back to gather information so that you can best share it with your friend or family member.
- Help dispel myths. Gather information so that you understand the disease -– and what is real versus what is fabricated.
- Build relationships. Getting to know the healthcare providers in your friend or family members' life is essential. The more the provider knows you and trusts you, the more comfortable he will be sharing information and having you around.
Source: The Role of the Patient Advocate National Patient Safety Foundation. April 2008.
Advocacy Action. Being a Better Patient Advocate. CR magazine, the magazine of the American Association of Cancer Research. August 2007.
