Communication - Examples of Questions to ask your Healthcare Team

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Asking your Healthcare Team Questions

Sometimes, patients feel hurried or stressed during their medical appointments and forget to ask the questions they have been wanting to ask. Or sometimes, patients don’t know what questions they should ask.

Consider bringing a tape recorder to make a taped record of what's said (even if you write down answers)
Go through the sample questions and mark the ones that you'd like to have answers to
Consider taking a family member or friend along, for support and for help in asking questions or recording answers
You may want family members or the Native Patient Navigator (also called "Native Sister" or "Native Brother") to help you select the questions to ask
Plan ahead what to ask--but don't hesitate to ask any new questions you think of while you're there
Write down your questions in advance, to make sure you remember to ask them all
Write down the answers, so that you can review them whenever you want
You and your trusted friend/Navigator may want to practice saying the questions before you get to the clinic
Keep a pad of paper with you at all times and write down any question that comes to mind.
You can talk with your Navigator about asking these questions
There are no dumb questions except for the ones you don't ask

Questions about cancer recurrence

Will IHS pay for my cancer care a second time?
Could this actually be something else besides my cancer coming back?
What does this recurrence mean?
What tests do I need to do to make sure?
If cancer, what stage is it?

Questions about Cancer Clinical Trial Studies

What is the purpose of the study?
Are other American Indians or Alaska Natives enrolled in the study?
Why do researchers think the approach may be effective?
Who will sponsor the study?
Who has reviewed and approved the study? Does my tribe need to review the study before I enroll (if I decide I want to do it)?
How are study results and safety of participants being checked?
How long will the study last?
What will my responsibilities be if I participate?

Possible Risks and Benefits

What are my possible short-term benefits?
What are my possible long-term benefits?
What are my short-term risks, such as side effects?
What are my possible long-term risks?
What other options do people with my risk of cancer or type of cancer have?
How do the possible risks and benefits of this trial compare with those options?

Participation and Care

What kinds of therapies, procedures and /or tests will I have during the trial?
Will they hurt, and if so, for how long?
How do the tests in the study compare with those I would have outside of the trial?
Will I be able to take my regular medications while in the clinical trial?
Where will I have my medical care?
Who will be in charge of my care?

Personal Issues

How could being in this study affect my daily life?
Can I talk to other people in the study?

Cost Issues

Will I have to pay for any part of the trial such as tests or the study drug? Will IHS pay or any part of the trial?
If so, what will the charges likely be?
What is my health insurance likely to cover?
Who can help answer any questions from my insurance company or health plan?
Will there be any travel or child care costs that I need to consider while I am in the trial?

Questions about surgery

What is this surgery for? Why do you feel I need it?
I need to wear a private token during the surgery that is important to my healing. Where can I have the nurse help me tape it so that it is with me, but not in your way (e.g., totem bag placed in small plastic bag, taped to back of thigh... Betadine can be applied to the outside of the plastic bag)?
Where can my spiritual healer come on the morning of surgery to pray with my family and I before I go into surgery (before I am under medication)?
Exactly what do you plan to do? Please explain it to me in simple terms so that I can explain it to my family.
What other kind of treatment can be used instead of surgery?
Is this surgery dangerous? What are the risks and what are the benefits?
Where within our Indian health care system can I get a second opinion quickly (within a week)?
I need to prepare spiritually for the surgery. This preparation will take about one week. What problems, if any, do you see for me delaying the surgery 1 week? What advantages, if any, do you see for me delaying the surgery 1 week?
Please show me what parts of my body are involved in this surgery?

Here are examples of questions specific to breast surgeries [Printed with permission, Morra and Potts, Choices, Avon Books, 1994, p. 330 and modified by NACR staff]

Where will IHS Purchased Referred Care refer me for my breast surgery?
Will IHS Purchased Referred Care pay for a member of my family to travel with me for my surgery?
Will you be able to just take the lump out or will you have to take my whole breasts? Both or only one?
How long will the operation take?
How should I expect to feel after my operation?
Will I need blood transfusions during the operation and should I bank my own blood before going to the hospital?
What will the scar look like? Please show me where it will be.
Will I be in pain? What will you do for my pain?
How long will I be in the hospital?
How soon after the surgery before my traditional healer visit me and help me?
Will I need special care at home after the surgery?
When can I get back to my regular routine? Will I have to take any special precautions?
What kind of exercises should I do?
How long will the recovery take? When can I get back to my regular routine? Will I have to take any special precautions?
When, following the operation, will you let my family / friends know the outcome? Where will they meet you?
What are the possible after-effects of the operation?
How disabling will the operation be? Temporarily? Permanently?
Will I have drains, catheters, or intravenous lines?
How many times have you done this operation?
If I decide to have breast reconstruction, can it be done as part of this operation?
If I decide not to have reconstruction, what other choices will I have?

Questions to Ask Your Plastic Surgeon Before You Have Breast Reconstruction

Will IHS/ Tribal / Urban Indian Health Programs pay for breast reconstruction?
What are the different choices of reconstruction surgery? What type do you think is best for me? Why?
How can my Traditional healer bless and purify whatever the surgeron is going to put inside my body?
How is the breast tissue that the surgeon going to remove disposed? Can my Traditional Healer do ceremony over the diseased breast tissue before it is disposed?
Should I have the reconstruction at the time of my mastectomy or should I wait until later? How much later can I have it done? If I need to have chemotherapy, should I wait until I have finished that treatment?
What are the advantages and disadvantages of having reconstruction at the time of my mastectomy? Of waiting to have it until later?
What are the side effects and risks that I should consider?
Will you be using tissue expanders? A saline filled implant? Can you use my own tissue?
Will you explain how the surgery will be done? What kind of anesthesia will you use?
What will I look like after the surgery? What kind of scars will I have and where will they be?
What will my new breast look like? Will it match my other breast? Will it change over time? Will I have to have anything done to my other breast?
Can I have my nipple reconstructed? How will it be done?
What is your experience with this operation?
Do you have any before and after pictures you can show me?
May I talk with someone who has had the operation?
How many operations will I have to have? Will I need to be in the hospital each time? For how long? How long will I need for recovery?
Will I be in much pain?
Will I need to wear a special bra after my operation?
How much will it cost? Will my insurance cover any part of it?
What can be done if the surgery is not successful?

Questions about Chemotherapy

What side effects am I likely to have with this chemo?
How can the side effects be lessened?
How long will the side effects last?
What can I do about side effects that are permanent (like heart problems)?
If IHS Purchased Referred Care (formerly called "Contracted Health Services") runs out of money while I am going through chemo, how can it be paid for so that my treatment is not interrupted?
Do I have to have my chemo treatments in the clinic / hospital?
Are pill-form of chemo less effective that IV methods of receiving the drugs?
What are side effects that are severe enough that I should contact the doctor?
How do these chemo drugs affect my insulin drugs?
How do these chemo drugs affect my arthritis drugs?
Why do some people who are taking the same medications as me not have as bad an experience? Or as good of an experience?
How can I describe the severity of my side effects to the providers so that they understand what I am going through?
Do the side effects mean that the drugs are working?

Questions about Radiation

Why do American Indians and Alaska Natives have more burns and rash side effects than other racial groups?
If IHS / Tribal / Urban programs cannot afford to send me to radiation treatment, how can I get help?
If I want to take part in the Walking Forward internal radiation clinical trial, who do I contact?
Will I be radioactive during the weeks I am having the radiation treatment? If so, how should I behave (like hugging or holding my grandchildren on my lap)?

Excerpt used with permission from Marion Morra and Eva Potts, Choices. HarperCollins Publishers: New York, NY 2003, pp. 200-201:

Exactly what type of radiation treatment will I be getting?
Who will be responsible for coordinating my radiation treatment? For giving my treatment?
If I have questions about my radiation treatment who should I ask?
Can I continue to work during these treatments?
Where is the best place to have the treatments?
How long will it take for each treatment? For the whole series?
Will I be able to drive myself to and from my treatments?
What side effects can I expect? How long will they last? Can these side effects become chronic? Are there possible long-term side effects?
How do I handle side effects if they occur?
What side effects should I report to the radiation oncologist?
How much will this treatment cost? Is it covered by insurance?
How much of a risk is involved? Will the radiation affect the surrounding areas?
Will I be having other kinds of treatment in addition to the radiation?
Are there any alternatives to radiation treatment?

Questions about Pain

What types of medicines would work best for my pain?
Does the IHS / Tribal / Urban Indian clinic have these types of drugs?
- If not, where can I get them?
- Will the IHS / Tribal / Urban Indian clinic pay for my travel costs?
- How much do the drugs cost?
- Will the IHS / Tribal / Urban Indian clinic pay for these drugs (reimburse me)?

How many weeks of these drugs am I allowed to have? (NOTE: this is an important question to ask if you have to travel a long way to the pharmacy or clinic that will provide these drugs)
If I am in too much pain to travel to pick up the drugs myself, may I have someone from my family pick up more of these drugs for me?
How am I supposed to take this medicine?
- (Is it a pill I take every four hours;
- a suppository I put inside my rectum;
- do I rub the medication on my gums whenever I feel I need quick relief from my pain)?

How long should I take this medicine?
Are there any problems if I am taking this medicine and the other medicines I am taking?
Are there any problems if I am taking this medicine while I am also taking traditional Indian medicines, teas, juices or poultices?
Are there any non-drug methods to help with my pain?

Talking to your provider about your pain

Talking with your provider about your pain is very important.
To better tell your provider about your pain, it may be helpful to keep a daily pain diary which includes:
- Where/when pain occurs
- What the pain feels like (sharp, dull)
- How long the pain lasts
- What makes the pain better/worse
- How the pain affects your life (sleep, working, cooking, taking care of kids)

Describe your pain as clearly as possible
List all medications you are taking
How is your pain relief
How does your pain feel throughout the day
How would you describe your pain
Do you have breakthrough pain
- If yes, do they happen without warning? Are they related to activity
- How intense is your breakthrough pain
- How much relief do you get for your breakthrough pain

When did pain start
Where do you feel the pain
What is the pain like (sharp/dull/etc)
Is the pain mild, moderate/severe
Is the pain constant or does it come and go
Does the pain change when you move
What makes better/worse
What have you tried for pain relief
How much pain do your current treatments relief

What should I do if my pain medicine isnt working?

Call/tell your healthcare provider
Ideas:
- I am calling because I am still having pain.
- My pain is (___) on a scale of 0-10 (or some type of rating)
- I take (pain medicine) every (___) hours
- My worst pain is (____) on a scale of 0-10
- I have taken (___) does of breakthrough pain medicine in the last 24 hours
- I am having the following side effects (____)
- Because of my pain, I can’t (____)

Questions about Fatigue

Will the cancer treatment I am getting cause fatigue?
Are there any treatments that I can take to ease or control my fatigue?
Are there things that I might do (exercise, eat right) to ease or control my fatigue?
What can be done if the treatments tried don't work?
What are the likely side effects of any treatment I might take for my fatigue?
Is there anyone else who might help me with my fatigue?
Are there any resources (booklets, internet sites) that will help manage my fatigue?

Questions about Hair Loss

Will I have hair loss?
How much hair will I lose?
How can I prevent hair loss?
Are there any medications I can take to reduce hair loss?
Will the hair grow in differently?
How will it feel (will it hurt) when my hair falls out?
Why do providers suggest that I cut my hair?

Patient questions relevant to lymphedema

Will the IHS, Tribal, or Urban Health Clinic pay for my lymphedema care?
How can I get a trained provider or therapist to fit me for a compression garment or bandages through the IHS, Tribal, or Urban Health Clinic? If not from these clinics, then what other programs will help me get a good fitting compression garment and bandages at no cost?
Will traditional Indian ceremonies (specific to each tribal community) help or hurt the lymphedema?
I am very overweight. Why does extra body weight make me more likely to get lymphedema? How can I control the lymphedema while I am trying to lose weight?
I am diabetic. How does diabetes affect the lymphedema? How does the lymphedema affect the diabetes?
I have high blood pressure. How does high blood pressure affect the lymphedema? How does the lymphedema affect the high blood pressure?
Does the lymphedema mean my cancer has spread? How can you be sure?
How long is the swelling likely to last for me?
What types of things may I have done to set it off?
What types of things can I do to reduce the likelihood of having it again?
How can I do ceremony safely (without risking lymphedema)?
What are some ways other Natives have explained this condition to their friends and family so that the patients haven't felt pressured to do something they should not do?
How can I exercise safely because of my arm / leg being so swollen?
How can I lose weight to help reduce my likelihood of lymphedema when I've never been able to keep off the weight before?
If the healthcare provider had to give me a shot or take blood from my arm(s) or leg(s) that had lymph nodes taken out or damaged, what can I do so that this doesn't happen again?
How can I get a "LYMPHEDEMA ALERT" bracelet or necklace?
Why can't the provider just drain the extra fluid out of my arm(s) or leg(s)?
How should I have blood pressure or blood draws done if both of my arms have had lymph nodes removed or damaged?
Why do I feel pain when I have lymphedema but other cancer patients don't have the pain?
Why do I get pain in my neck or back when I have lymphedema?
Why am I more likely to have infections just because I've had lymphedema?
What is cellulitis and why am I more likely to have a problem with it?

Questions about Sexuality and Intimacy and Cancer

How will my treatment affect my sexuality and ability to have intercourse?
Can I have intercourse during my chemotherapy?
- during my radiation therapy?
- during my cancer treatment?
What can I do to manage my hot flashes?
Can I take estrogen or other medications?
What type of contraception should I use to prevent pregnancy?
When can I begin to have intercourse after my pelvic surgery?
Will my insurance or the IHS pay for a sexual counselor or sexual aids?
What type of scars will I have from my surgery? What can I do about them?
Will I be able to get pregnant/father a child after my cancer treatment?
Is there medication I can take to increase my interest in sex?
Are there positions that will make intercourse easier for me/my partner?
How do I manage my stoma?
What can I do if my vagina is shorter or narrower after surgery or radiation therapy?

Questions you may want to ask when contacting an organization for help

What kinds of assistance are you able to give to cancer patients?
How long does it usually take to receive help?
"How soon will I hear back from you?"
"Is there anything else you need from me?" (such as paperwork)
"What suggestions do you have for what else I should do to get the help I need?"
"What other organizations would you suggest I contact?"
"Thank you for trying to help me. I know you are busy and I appreciate you making time to help me."
NOTE: If you are getting help from the web, print out each page that is helpful to you