QUIZ: Ready to Take Charge?

Want to find out if you are ready to take charge of your own healthcare decisions? Answer yes or no to these questions:

  • Do you know about your condition or disability, including treatments you have received, or are getting, and what future medical monitoring will be important?
  • Do you, or have you ever, called to make your own doctor’s appointments?
  • Have you ever spent any one-on-one time with your doctor to ask questions about your health in private?
  • Do you make decisions about your health care—like letting your parents and doctors know your preferences about treatments, follow up or medications?
  • Have you talked to your doctor about how and when you’ll start seeing an adult doctor(s)?
  • Do you know about your health insurance? Have you talked to your family or medical team to prepare for the insurance changes that happen when you turn 21?
  • Have you explored resources that might be available and helpful to you—like Social Security Income, Department of Vocational Rehabilitation and/or school transition to work services, special education accommodations in college, cancer survivor scholarship opportunities?

Great! We’re done. Now count your yes and no answers.

 

Quiz Results

Mostly Yes

Lookout! You are well on your way to taking charge of your care, if not the whole world. You are on top of it. Your transition into the adult world is coming, but you are ready.

Half-n-half

Keep it up! It sounds like you are headed in the right direction. Over the next few months, make a point to ask lots of questions and learn details about your cancer diagnosis and treatment.

Mostly No

Time to dive in! When it comes to your health, sometimes what you don’t know CAN hurt you so stay informed. Talk to your care team and your parents about how you can start to play an important role of taking care of the most important person on the planet—YOU!

What are my rights and responsibilities as an AYA patient?

CHOC Children’s Cancer Institute

Adolescent and Young Adult Rights and Responsibilities

At Children’s Hospital of Orange County (CHOC), we believe every patient deserves special treatment and high quality care; our adolescent and young adult patients are no exception.  It is a unique time in your life, and you have specific needs that we recognize are far more individualized that those of our pediatric population.  The health care providers at CHOC feel they are not only responsible for achieving optimal physical well-being during your stay here, but also meeting your needs psychologically and socially, as well.

In order to achieve the goal of optimal well-being, we want you to understand your rights and responsibilities regarding participation in the Adolescent and Young Adults (AYA) Program.  If you do not understand any of these points or you need help, we can provide assistance or use an interpreter if necessary.

Your rights as an AYA patient:

1. You have the right to considerate and respectful care, and to be made comfortable.  You have the right to have your cultural, spiritual, social, and personal values, beliefs, and preferences respected.

2. You have the right to be taken seriously.  Conversation will be directed toward you unless you designate otherwise.

3. You have the right to be told about your illness, treatment plan, and recovery potential in the language you speak and words you understand.  You have the right to be part of the care coordination process.

4. You have the right to ask ethical questions and express your feelings about ethical concerns that may come up.  This may include questions about conflicts and how they will be resolved, as well as withholding CPR and declining or withdrawing life support treatment.  If you are a legal adult (18 years or older), it also involves deciding who you would like to make these decisions for you if you are unable to make them for yourself at some time in the future. Thus, if you are 18 or older, you should complete an advanced directive to have on file with us here at CHOC (please ask your nurse if you have questions about this).

5. You have the right to participate in decisions about your medical care (and if you are 18 years or older, you have a right to make these decisions about your health care).  Health care staff will provide any information you may need to understand the medical care or tests that you may need during your treatment.  This information may include a description of the treatment, other treatment options, and the possible risks and benefits of your treatment options.  In the case of a life-threatening emergency, medical care will be given before receiving consent.

6. You have the right to ask for or refuse treatment, to the extent permitted by law.  However, you do not have the right to inappropriate or medically unnecessary treatment or services.

7. You have the right to leave the hospital, even against the advice of the doctors.  However, in this type of situation, you must sign an Against Medical Advice (AMA) form prior to leaving the hospital.

8. You have the right to consent to, or refuse to take part in, clinical research conducted by hospital physicians and staff.

9. You have the right to personal privacy.  You have the right to ask anyone in the room to leave during an examination or discussion about your care or diagnosis. Staff will knock prior to entering your room.

10. You have the right to confidentiality regarding your medical records.  The hospital may release information when permitted or required by law.  Except for these circumstances, the hospital will get written permission to release any information about you, other than basic information.  Specifically, if you are younger than 18 years old, your parents will need to sign a release of health information form in order for information to be shared with anyone. However, if you are 18 years or older, as a legal adult, you will need to sign the form in order for information to be shared with anyone – even with your parent(s).

11. You have the right to be kept free from restraints and seclusion unless deemed medically necessary and as required by law.  You have the right to leave the unit (as approved by doctor or nursing staff) per AYA policy.

12. You have the right to socialize and maintain a sense of normalcy while in the hospital.  You may keep personal belongings such as clothing, electronic devices, entertainment items, reading materials, and food from home (as allowed by your doctor) in your room.  However, it is important to understand that CHOC is not responsible for loss or damage to any of these personal items that you bring with you to the hospital.  You have a right to choose who you do (or do not) want to have visit as outlined in the AYA guidelines.

13. You will have access to psychosocial support that is focused on the needs and concerns many adolescent and young adult patients express.

Your responsibilities as an AYA patient:

1. It is your responsibility to participate actively in decisions about your care and treatment.

2. It is your responsibility to treat staff and other patients with respect and dignity and to respect others patients’ privacy.

3. It is your responsibility to be considerate of other patients and their families and follow hospital rules about patient, family, and visitor conduct.

4. It is your responsibility to follow CHOC’s visitor policy and the specific AYA guidelines that CHOC nursing staff with discuss with you.

5. It is your responsibility to respect hospital property and the property of others.  Computers, internet, electronics, and gaming systems must be handled with maturity.

6. It is your responsibility to be part of the health care “team.”  This includes: • Providing accurate and complete information about your health and health  history • Answering all questions honestly and accurately • Asking questions so that you understand what is happening and why • Following the treatment your doctors and nurses have planned • Telling us when any changes occur • Knowing the doctor who is in charge of your care.

7. You have the right to know which hospital rules and policies apply to your behavior while a patient.  Talk to your nurse about the specific AYA guidelines.