Caring for Loved Ones at Home

An Illustrated, Easy-to-Follow Guide to Short or Long-term Care 4th Edition.


13. Understanding Your Condition

Questions Doctors Need Answered


You will probably see many doctors, nurses, pharmacists and other caregivers during the length of an illness, medical condition or recovery. They all want some of the same answers to the following questions. If you have written them down in advance, it can save you some time.

What concerns you about your condition today?

What is the history of this condition?

Where in the body did the pain/symptom begin?

When did it start (date and time)?

On a scale of 1-10 with 10 equalling the worst pain you have ever had (e.g., broken arm, appendicitis) how do you rate your pain?

Describe any other symptoms you have had.

What were you doing at the time of the pain/symptom?

To what degree does your pain/symptom limit your normal activities?

How long does the pain/symptom last (an hour, all day)?

Is the pain/symptom constant or does it change?

Does the pain/symptom stay in one place or spread out to other parts of your body?

What makes the pain/symptom worse?

What makes the pain/symptom better?

How do the following things affect your symptoms: bowel movements, urination, coughing, sneezing, breathing, swallowing, menstruation, exercise, walking and eating?

What do you intuitively feel is wrong?

Do you have any other information that might help me?


Your Questions About Tests


Even though you are at home now, you may need to return to a hospital or clinic for further tests and treatments. The following questions will help you to understand your condition and have some control over what happens to you. That control will probably help you recover at home faster.

Studies have shown that people who are aware of the physical effects of a test or treatment are less afraid and recover more quickly from a difficult procedure than patients with little or no advanced information. Although caregivers may not have had a particular test themselves, they can usually provide fairly detailed information based on other people's experiences and the medical literature on the specific test or treatment. It is important for a person to understand why a doctor has recommended a test and how the test is done. The following questions can be asked of a doctor, nurse or technician to help the person decide whether or not to consent to the test.

What is the purpose of this/these tests?

What do you expect to learn from these tests? Will the results change my treatment in any way?

What will the test feel like (any pain or discomfort)?

What are the common risks involved in these tests?

Are there any after effects of these tests?

Can my spouse/child/friend come with me? If not, why not? (The medical world is slowly changing to allow someone to be with the patient during difficult tests. The change toward this system is similar to how fathers are now permitted into delivery rooms.)

Can I return home or to work after the test?

When will I get the results of these tests? Can I see you to go over them with you?

What will happen to me if I choose not to take these tests?

What are the chances of error or false positive/negative results? Some tests have a high incidence of 'false positives'. Often tests cannot be definite but they can help doctors know if they are on the right track.

What are the costs involved, if any?

Other questions.


Your Questions About Medications (Drugs)


You may ask your pharmacist or doctor the following questions. Some information is included with the medication. People are responsible for thinking about these questions whenever they are asked to take new medication. Keep in mind that people react in different ways to medication. Also remember that not following the instructions carefully may lead to poor or even dangerous results.

Some of the answers to the following questions can be found in any of the standard pharmaceutical books listed in the reference section. If your pharmacist or doctor cannot answer your questions with enough detail, check with one of the reference texts.

What is the name and purpose of these drugs?

What do the drugs actually do inside my body?

Will the generic drug absorb in the same way as the name brand drug? If not, do I need a different dosage or different drug?

How often do I take them each day and for how many days?

What food, liquids, activities and other medications should I avoid when taking these drugs?

What are the effects of mixing my various drugs together?

What are the common and less common side effects of these drugs?

How can these side effects be controlled?

If this drug is a narcotic, should I also be getting a stool softener and/or laxative and eating more fibre and drinking more liquids to prevent constipation?

When should I return to give you feedback about the effectiveness of the drugs? How do I know when I should call you if the drugs produce side effects?

What will happen if I choose not to take these drugs?

What are some alternatives to taking drugs for my condition?

Is there a less expensive generic version of these drugs?

What special storage instructions should I follow? Pharmacists usually label medication with specific instructions but you should be sure that the labels are present.

Can this prescription be repeated without coming to see you again?

What are the costs involved? Many prescriptions are never filled because people do not tell their doctors that they cannot afford the medication.

Do you know if my medical insurance covers any of these costs? (Ask your insurance agent or government insurance official this question.)

Other questions.


Questions to Your Doctors About Your Condition


Once you have been physically examined and appropriate tests are done you will talk with your doctor about your condition. Your family doctor, as your advocate and mediator in the medical world, should help you understand the medical system. Why and how are tests done? What does the diagnosis of your condition mean to you? What treatment alternatives are there? What is the prognosis (prediction of the probable course of a disease) for your condition? What types of support (financial, physical, emotional and spiritual) are available to you?

Try to get your family doctor actively involved if you have trouble understanding or talking with your specialists. Always make sure that you understand what your doctors are saying. It is common for them to use terms you may not understand. Doctors had to learn what these terms meant when they went to school, so they can help you understand them too.

In order not to waste your doctor's time, it is important to ask specific questions. If you know your family doctor well, you might give him a copy of the following checklist of items that you want answered, especially if your situation has changed dramatically since your last visit.

Fill in the answers to your questions (or get a family member or friend to do it for you) so you do not have to repeat the questions at a later point. Also ask for reference material that might answer some of the questions for you. This reduces the time commitment of your doctor and allows you to return later with even more specific questions and concerns. There are times, of course, when your doctor cannot give you specific answers because your disease may not be predictable. However, your doctor can offer some educated guesses with recommendations of where you can go to get further information.

Diagnosis

Diagnosis is not an exacting science because there are too many unknown variables. This is why second opinions are sometimes necessary. Doctors can usually provide an accurate diagnosis with illnesses and conditions that have exacting scientific tests. One must be careful, however, that the test was done accurately and that the conclusions are confirmed in serious conditions before making major treatment decisions.

What do I have?

How did I get it?

How can I prevent it from happening again or getting worse?

Other questions.

The Disease Itself

Based on your experience and medical studies, what is the usual progress of this disease?

What can I expect next?

What other parts of my physical and mental abilities will be affected?

Other questions.


Infections

Can I give this illness to others and if I can, how would they get it from me?

Other questions.


Other Possible Diseases

Could the test results and symptoms indicate a different disease than the one you mention?

Other questions.


Treatment

What treatment do you suggest?

How does the treatment work?

How will I evaluate its success or failure?

How long after I begin the treatment should I see you again to report any progress?

How often will I need the treatment?

What are the side effects to this treatment?

What are some of the medical and nonmedical alternatives of these treatments?

Other questions.


Prognosis

Prognosis is a prediction of the probable course and outcome of a disease or condition. It is not an exacting science. While you want to know what is probably going to happen to you, there are

many variables that may give you a different outcome than what is expected in other people. Your body, mind and spirit are unique and what happens to you may be very different than what happens to other people.

What is the expected outcome of this illness?

What will happen if I choose not to treat this illness through medication, surgery or other treatments?

What are the long-term effects of this illness?

Will I have pain as the disease develops?

What is an educated guess to how long I have to live?

Other questions.


Questions When You Go to a Hospital


When you go to a hospital, it is important to remember that you are there to receive a service. You remain in control of that service by consenting to, or refusing, the tests and treatments offered to you. You can refuse any and all treatments and tests offered you if you wish, unless you have a communicable disease that may harm others.

If English is not my first language, is there anyone I can speak to in my own language to help me understand my medical care?

What is the name of the admitting doctor who I can call if I need help? Who is the doctor in charge of my case and how can I reach them?

Is the doctor in charge of my case a specialist, intern, resident or medical student?

What special rules and regulations should I be aware of while I am in this facility?

What is the discharge procedure for leaving this facility? (You can leave whenever you decide but it may be against a hospital's wishes.)

Is this a teaching hospital, and if it is, will anyone request that I participate in a research or educational program? (You have

the right to consent or refuse to be part of any research or education program.)

Does the hospital have a patient advocate office or social worker who can answer any of my questions about hospital procedures?

What costs are involved in my hospital stay, if any?

Other questions.


Questions Before Surgery


Surgery is a frightening thing for most people. If people understand the reasons for surgery, the procedures that are followed and the results they can expect, then their fear and anxiety is greatly reduced. Studies have shown that people who understand what is happening to them recover more quickly and often feel less pain because of reduced anxiety.

What are the benefits and risks to this surgery?

What are the alternatives, their benefits and risks?

What is the prognosis if I choose not to have surgery?

What are the risks of anesthesia in my condition? When will the anesthesiologist meet with me to explain the procedures?

What is the success rate for this surgery? What is the doctor's own success rate with this surgery?

What are the pre-surgery procedures?

What happens during the actual surgery?

What are the post-surgery procedures?

Will I have much pain and discomfort after surgery?

What things can I expect to see so that I am not worried when I wake up, e.g., will I be on a ventilator, will I have blood transfusions, and will I be in the intensive care unit?

What is the expected length for my recovery from surgery?

How soon after surgery can I go to the bathroom, eat, walk, go home or to work, have sex, smoke and drink alcohol?

What are the names of the surgeons who will be operating?

Will there be any medical students operating? (You have the option to refuse treatment by anyone other than your surgeon.)

What are the costs involved, if any?

Other questions.

Caring for Loved Ones at Home


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Copyright © 1996, 1999, 2002, 2006 Harry van Bommel

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