Consumer/Quality Insider: Family Health Advocacy
Debra: This is Healthcare 411 for the week of July 5, 2006. Healthcare 411 is produced by AHRQ, the Agency for Healthcare Research and Quality, part of the U.S. Department of Health and Human Services. I’m Debra James.
Rand: And I’m Rand Gardner.
Debra: Getting quality health care means you need to take an active role in your own health care. If you’re not the type of person who is comfortable asking questions of your doctors, or if you’re facing a difficult medical decision, you might want to bring along a family member or friend who can help you ask questions. Or perhaps someone you know needs your help. Dr. Carolyn Clancy, Director of the Agency for Healthcare Research and Quality, is here with Rand Gardner to discuss what you should know about having, or being, a family health advocate.
Rand: Dr. Clancy, thank you for joining us today.
Dr. Clancy: A pleasure.
Rand: So what is a family advocate?
Dr. Clancy: By a family advocate, we mean a friend or family member who can accompany you when you’re going to a medical visit with a physician or to the hospital someone who can function as your extra set of eyes and ears so that you make sure you get all the relevant information. A family advocate could be a close friend it could be a co-worker, someone that you trust and who brings your best interest to the encounter.
Rand: Why would someone need a family advocate or have somebody else be their eyes and ears?
Dr. Clancy: Many encounters with health care are routine and fairly mundane and you probably wouldn’t need a family advocate for that. On the other hand, if you had been told that you had a very serious diagnosis for example cancer most people, upon hearing that news, are still awake, they’re still conscious and listening to what’s coming next, but its an incredible emotional moment and its almost guaranteed that they’re going to miss details. Having an advocate with you means that someone else is going to be picking up on some of the information that probably went right by you because some part of your brain is thinking Wow, what happens next? What am I going to do?
Rand: How would I know when to bring someone with me?
Dr. Clancy: The question of when you would bring a family advocate is a really good one and there’s not always a clear answer. There are many occasions when people have been having a series of tests and the question in mind is - is this something serious like a cancer? And then they go to have an appointment with the doctor to discuss the test results. That’s the kind of scenario where you might know ahead of time. Other times it might be that you would actually have to come back for another visit and bring someone with you. Its not always predictable, in terms of the timing. There are many leaders in health care who actually make a recommendation that if you’re going to be admitted to the hospital, that the more you can have someone with you - an advocate - the better off you’ll be.
Rand: Would I need approval to bring someone with me into the hospital or a doctors office?
Dr. Clancy: You don’t need approval ahead of time to bring someone with you. In general, most of the time, if you ask about two minutes before you’re walking into the exam room, that’s perfectly okay and many doctors are very accustomed to this.
Rand: Okay, what should I be considering in choosing somebody to be my advocate?
Dr. Clancy: I think it would be important, when choosing someone to be your advocate, to select someone who is not going to get even more worried or anxious than you might be someone who’s pretty calm, someone who can ask good questions, and someone who knows you pretty well.
Rand: What should a potential family advocate understand about the role before they say yes?
Dr. Clancy: A potential family advocate should know what it is that you expect from them. Most people don’t necessarily want an advocate to be making decisions for them while they are conscious and capable of making those decisions. It would be helpful to have a conversation with the advocate before the encounter or hospital visit that you’re bringing them for you know, to go over what you’re expecting, what you’re worried about, how they can be helpful to you, and so forth. As a family advocate it would be really helpful for you to know whether your friend or relative what kinds of tests they have had, what kinds of medications and prior conditions they have already, and, specifically, what they’re worried about.
Rand: Is there anything special you would need to know to be an advocate for a child or for an elderly person?
Dr. Clancy: Being an advocate for a child or for an elderly parent, relative or friend, has some very similar features. In both instances, an advocate may actually be voicing questions and concerns for an individual who may not be capable of doing that themselves in the case of a child because they don’t have the right language or don’t know the questions to ask. In the case of an older person its not even occurring to them to ask very specific questions. But in both instances, there are very strong similarities. The big difference would be if you were a parent of a child, you’ve got a legal responsibility. That’s going to be far less clear if you are the advocate for an older person.
Rand: But there are other issues that are important to understand when being an advocate for an older person, aren’t there?
Dr. Clancy: One particular issue that’s incredibly common among older people is being hard of hearing and what that means isn’t just that the patient may have difficulty hearing, which is hard enough, but many people don’t like to know to let others know that they’re having so much trouble hearing, so they’ll nod, and the advocate can play a very important role by making sure that the patient is actually understanding the answer to the question, which will save a great deal of time and trouble down the road. For people with vision issues, or for people who have trouble reading, an advocate can be incredibly helpful by helping the doctor or health care professional to understand that he or she might be pointing out something to the patient for example, a finding on an x-ray that the patient is unlikely to see. In that instance, the advocate can literally be the patients extra set of eyes and can explain that to the patient. Similarly, the advocate can read some things for people who have difficulty reading or who’s first language is not English.
Rand: Alright, so as long as I can tell my doctors that its okay to speak in front of my health care advocate, you’ve indicated it shouldn’t be a problem. But what if I need my advocate to speak FOR me, say if I’m unconscious?
Dr. Clancy: If you’re going to want your advocate to be able to speak to your doctor and other health professionals providing care to you, you may need to sign some forms giving that person the right to do so, so that they know your privacy would be protected. If you’re a family advocate, it would be important to know if that individual has an advance directive what some people would call a living will and if so, if they have designated a relative or friend to have power of attorney to make decisions for them if something unexpected happens say they’re put on a respirator or some catastrophic events happens to them. If they don’t, then that might be something that you would discuss with the person for whom you’re advocating.
Rand: Well Dr. Clancy, how can someone be helpful to a person who just needs help navigating the health system, or perhaps someone with limited English skills? What should these advocates know?
Dr. Clancy: Some of the issues that a family advocate might need to be especially attentive to would include insurance issues. Occasionally people overlook the fact that they might need a paper if they’re going to have a particular test or a referral to a specialist done so an advocate could be right there to say Do I need to bring a piece of paper, is there some specific form that I need? An advocate is likely to be in a position to be a very good observer of how health care professionals are interacting with that particular patient. If a patient even one who has some difficulty communicating questions or concerns begins to voice some concerns and the advocate notices that a health care professional is ignoring them, that’s very, very important and the advocate might be in a position to raise the question about whether it might be time to see someone else. An advocate could also be very helpful with issues related to transportation, dealing with issues of medication compliance and potential side effects, asking questions about follow-up care after surgery, or even specific types of tests done on an outpatient basis. And also, asking the what’s next question If this test is negative, what does that mean? If its positive, do I have to have more tests and so forth.
Rand: Dr. Clancy, is there a final thought you would like to leave with our listeners?
Dr. Clancy: You never know. All of us, at any point in time, may one day either need an advocate or be asked to be one. Its important to be prepared and think through what you’re going to need and how another person can help you.
Rand: Dr. Carolyn Clancy, thank you for talking with us today.
Dr. Clancy: Thanks very much for having me.
Debra: That’s it for this week. For more information on these and other health-related stories and topics go to www.ahrq.gov. Healthcare 411 is produced by AHRQ, the Agency for Healthcare Research and Quality, part of the U.S. Department of Health and Human Services. For Rand Gardner, I’m Debra James. Please join us for the next edition of Healthcare 411.