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To do your job well as a family caregiver you will often need information from medical staff. Some of this information is complicated, and often it must come from different sources. As a result, many family caregivers experience problems at some time with getting information that they need. This chapter shows you an orderly sequence of steps to go through in getting medical information.
There are two things you should understand
about getting medical information:
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It is usually reasonable to assume that the medical staff wants to help you and would like to give you the information you need.
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Often certain staff members can't answer your questions because each medical care organization has its own rules about who knows what and who is allowed to give information to patients and caregivers. One provider's office has different rules from another. One hospital differs from another, and even within the same hospital, there are often different rules for inpatient (patients who stay overnight) and outpatient (patients who come and go in the same day) departments, different rules in surgery, in oncology (care of patients with cancer), or in rheumatology (care of patients with joint diseases), and so on. What this means is that you may have to learn who has the information you need for each new office, service, or hospital that you deal with.
As a family caregiver, you must have certain essential information in order to provide the best possible care at home. The four kinds of information in the Home Care Guide chapters should always be available to you:
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Understanding the problem (What is the problem? What causes it? Who is most likely to have significant effects from the problem? What are the likely results of the problem? What can family caregivers expect to accomplish in dealing with the problem?)
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When to get professional help (for emergencies and during office hours).
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What you can do to help, either in preventing the problem or dealing with it once it has happened.
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Carrying out and adjusting your plan, including problems you might have, checking on the progress of your plan, and what to do if your plan isn't working.
You need all of this information if you are to meet your caregiving responsibilities, and you should feel free to ask for this information and to continue to ask until you have it
Your goal is to
Obtain medical information that you need as quickly and efficiently as possible, with as little stress as possible for yourself, and with the maximum help from the medical staff with whom you deal
If you need information and feel the situation is an emergency, then you should call the doctor or an emergency room. Be sure the person to whom you speak understands that you believe this is an emergency. Use the word "emergency" in your question, and then be persistent until you have the information you need.
Here are some examples of phrasing you might use
"I have an emergency and need to talk to a doctor." (Be prepared to answer the question "What is the emergency?")
"I have a question about _________________ and I'm not sure if this is really an emergency or not. Who can help me decide?"
"I'm very concerned about ____________________. I think it might be an emergency. Can you help me?"
What You Can Do to Improve Your Ability
to Get Needed Information
Be sure your questions are phrased clearly
Know exactly what information you need, and state your questions clearly.
What You Can Do to Improve Your Ability to Get Needed Information
Be sure your questions are phrased clearly
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Ask yourself "What do I need to know to do my job as a home caregiver?"
This focuses your attention on what is most important. Otherwise, you might find yourself asking questions without finding out what you really need to know.
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When you ask questions, first state what you need to know and then why you need to know it
It is much easier for someone else to understand your question if you start with a clear statement of the information you need. Then your listener will be able to understand the rest of what you say. For example, let's assume that the person you are caring for had malaria when he was in the service. You noticed that some of his symptoms are similar to malaria, and this made you worried that the malaria was returning. When you ask your question, start by asking if any of his symptoms could be due to malaria. Say that the reason you are concerned is that he had malaria when he was in the service and the symptoms he has now are very similar. The listener then knows both what you want to know and why.
On the other hand, if you started with a long tale about his being in the South Pacific during the Second World War, and that he got malaria there, and that it almost killed him, and finally got around to asking what this has to do with his symptoms now, the listener could be confused. He or she might think, "Is she telling me about his service record because she wants me to know what a hero he was? Or because she thinks malaria might have returned?" As you can see, it is much clearer to the listener if you start with what you need to know.
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Write out your questions and check them with other people.
Writing down your questions beforehand is one of the best ways to be sure you are being clear. Having a nurse or social worker read your list before you see your doctor or other health professional is a good way to check on your clarity. If you get flustered (which happens to many people), then you can read your questions aloud.
Ask the most important questions first
Then, if the doctor or nurse is called away before you are finished, you will still have answers to your most important questions.
Learn who can answer your questions
Different doctors and other health professionals can give you different kinds of information, and this can vary with different providers, hospitals, and clinics. You need to know who has the information you seek for each new treatment setting.
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Learn which staff members give different kinds of information to patients
The best way to find this out is to ask a medical staff person such as a nurse, social worker, or doctor. (Secretarial staff are less likely to know this, but sometimes they can be of help.) A good way to ask is to start your question with "Who can tell me . . .?" For example, "Who can tell me when my husband will be discharged" or "Who can tell me when my mother's treatments are scheduled?"
It is a good idea to ask these questions early, when you begin working with a new treatment team. That way you can avoid information problems later. It is also helpful to keep a record of the questions as well as the names, titles, and phone numbers of the people answering your questions.
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Be persistent!
If medical staff say they don't know or can't tell you, then ask who can. You might have to ask several people, but don't feel that you are getting the run-around. Medical care is often complicated, which means that getting information about it also can be complicated. Don't become discouraged. You have a right to all the information you need to be the best possible caregiver. Pleasant persistence almost always pays off. Getting information becomes easier and easier the better you understand the medical care system. (See the last page of this chapter for a list of the types of information that different professional groups can usually give you.)
Ask the questions yourself or have someone ask for you
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Ask the questions yourself.
Have a clear idea of what you need to know. Ask or read
your questions. Ask follow-up questions until you are
very clear about the answer you received.
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Ask a nurse, social worker,
or other member of the health care team to get the information
you need.
You may need to ask someone else to get
information for you because you don't have the time
to find the right person or because the medical person
you need to talk to is not available or because someone
gave you an answer, but it didn't contain the information
you need. If any of these things happen, a good strategy
is to ask a nurse or social worker to ask your questions
for you. Nurses and social workers understand medical
terminology and how medical organizations work. They
are also usually good at explaining these things to
non-medical people. Choose nurses or social workers
with whom you feel comfortable, and tell them what information
you need and why you can't get it yourself. Then ask
for their help.
Problems You Might Have Carrying Out Your Plan
Problem:
"My questions are stupid."
Response:
No questions are stupid. Medical staff want to give the best possible care to the person you are caring for. For this to happen, caregivers such as you must understand what to do and why.
Problem:
"I feel confused by the health care system."
Response:
Medical staff use unfamiliar words, have specialized titles, and are organized into groups with unfamiliar names. It is not surprising that many patients and their families are confused. What you need is a guide to help you through the health care system and its terms. Nurses and social workers are often good guides. Ask them to explain the system to you, such as what the specialized titles mean, what the different groups do, and what medical terms mean. As you learn about the system, you will soon be using the medical terms yourself.
Problem:
"I feel intimidated by medical staff."
Response:
Some people feel that medical staff are so important or so busy that they should not take up their valuable time with questions. This attitude is wrong. Medical staff are there to help patients and family caregivers. To do this, the staff must give family caregivers the information they need to care for the older person at home.
Problem:
"If I need to know something, the health care provider will tell me."
Response:
This is not necessarily true. Although the provider will try to tell you everything you need to know, he or she can't always remember what you were told before, might assume that someone else told you, or might simply forget to tell you certain things.
Problem:
"If I ask too many questions, the staff will think I'm a nuisance, and then they won't take good care of the person I am helping."
Response:
It is unlikely that the staff will think you are a nuisance, but, even if they do, there is no reason to fear that this would affect how they treat the older person. Staff share your goal of giving the best care. Furthermore, medical professionals are trained to treat everyone to the best of their ability no matter what they think about the person. To do otherwise would be unethical and against the highest standards of medical care.
Think of Other Problems You Might Have Carrying Out Your Plan
What other problems could get in the way of doing the things suggested in this chapter? For example, will the older person cooperate? Will other people help? How will you explain your needs to other people? Do you have the time and energy to carry out this plan?
You need to make plans for solving these problems. Use the four COPE problem-solving steps in the chapter on "How to Use the Eldercare at Home Book to Solve Caregiving Problems."
Don't expect perfect results right away. However, over time you should notice significant improvement in how quickly you get the information you need.
What to Do If Your Plan Isn't Working
If you are having some success, but not as much as you would like, you might be expecting too much progress too soon. Be patient and keep trying. The medical care system is complicated, and it takes time to learn it.
If you feel that medical staff are not giving you the information you need, your next step should be to make an appointment with the doctor or other health care professional who has responsibility for the patient's care at that time and ask him or her your questions. You should also explain the problems you have had in getting information and ask how to avoid these problems in the future. (Note that you might be charged for this appointment, and many insurers will not pay for appointments with care persons. It is best to ask about this when making the appointment. If you cannot afford to pay, you can ask to have the fee waived or you can ask if your meeting can be scheduled as part of the patient's regular meeting with the doctor.)
Don't be angry and don't be intimidated. Being angry only makes the other person angry, too, and being intimidated means that you won't explain the situation clearly. A calm, objective approach works best.
Most hospitals have patient advocates or similar staff members. These people are familiar with problems in the hospital as well as with how to deal with those problems. They can help you to get information, and, in addition, they can help to change the way the hospital operates. You might help future patients by telling patient advocates about problems you are having.
As a last resort, the person you are caring for always has the right to change doctors or treatment settings. If you are considering that, be sure that the new provider and new setting will give the information and support you need.
Kinds of Information that Different Medical
Professions Can Usually Give You
Doctors and some other health providers can provide an explanation of the diagnosis, review of the whole treatment plan, prognosis (the likelihood of cure or remission and the usual course of the disease), how often the patient should be evaluated, how often he or she needs to see a doctor, when he or she should be admitted to a hospital, what medicines should be taken and when, when the medicines will take effect, whether medicines are working, what medicine side effects might occur, why certain tests are needed and the results of tests.
Nurses work with the doctor in caring for the patient and caregivers, manage side effects of treatments, arrange appointment schedules, demonstrate practical home care techniques, provide nutrition information, discuss results of some tests (this depends on the doctor or hospital policies), and how and when to take medicines not prescribed by a doctor.
Social workers work with the doctor and nurses in caring for the patient and caregivers, help in dealing with family and emotional problems, help to arrange for medical care at home, help with admission to a nursing home, and help with finding financial assistance and determining whether you qualify for assistance from different government programs.
This list is a good starting point for getting information, but be prepared for exceptions. Hospital doctors have different titles such as "attending," "fellow," "resident," and "consultant," as well as different types of specialties such as "surgeon," "oncologist," "radiotherapist," "pathologist," and so on. Depending on your medical needs, doctors and other health professionals with different titles and specialties have different responsibilities and can give you different kinds of information. When several health professionals are involved, one member of the team will be coordinating the care. In this case, ask who this is and talk with this person.
- Peter S. Houts, PhD
Julia Bucher, RN, PhD
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THIS PAGE LAST UPDATED ON 5/03/04