Cancer Instructions Beyond Standard Written Handouts

The discharge folder is twenty pages of small grey print. Somewhere inside it is the one line that says when to call about a fever. If you cannot read that folder, or cannot read it in English, the answer is not to try harder. Federal law puts most of this duty on the clinic. This page names what to ask for.

CDC updated its definitions in August 2020 and split the idea in two.

Personal health literacy is "the degree to which individuals have the ability to find, understand, and use information and services to inform health-related decisions and actions for themselves and others."

Organizational health literacy is "the degree to which organizations equitably enable individuals to find, understand, and use information and services..."

That second definition is the useful one. A handout nobody can use is an organizational failure. The Plain Writing Act of 2010 "established the requirement that content for the public is written for its specific audience."

Section 1557 of the Affordable Care Act covers health programs that get federal money, including most hospitals and cancer centers.

It requires "reasonable steps to provide meaningful access to each individual with limited English proficiency." That means "oral language assistance or written translation."

It also sets a quality floor. Covered entities are "prohibited from using low-quality video remote interpreting services or relying on unqualified staff, translators." A bilingual receptionist pulled from the front desk is not a qualified interpreter.

HHS says clinics must post a notice of individuals' rights about communication assistance. They must also post taglines in the top 15 languages spoken by people with limited English proficiency in that state. They are encouraged to write a language access plan.

Ask for a qualified interpreter at three moments: the consent conversation, the chemotherapy teaching session, and the discharge talk. Those are where the numbers and warnings live.

The Americans with Disabilities Act requires covered entities to "communicate effectively with people who have communication disabilities." The aids have names. Use them.

If you are blind or have low vision, the listed options include "providing a qualified reader; information in large print, Braille, or electronically for use with a computer screen-reading program." That last one matters most, because a plain digital file works with the screen reader you already own.

If you are deaf or hard of hearing, options include "a qualified notetaker; a qualified sign language interpreter... real-time captioning; written materials."

If you have a speech disability, options include a qualified speech-to-speech transliterator and "allowing more time to communicate."

Extra time is a listed accommodation. Asking for a longer slot is a request the clinic is meant to handle.

Teach-back means the clinician asks you to say the plan back in your own words. AHRQ recommends open-ended questions, not yes-or-no ones.

AHRQ suggests the clinician say "I want to make sure I explained things clearly," so the check lands on their explanation rather than your memory.

The stronger version is the show-me method. You demonstrate the dose instead of describing it. AHRQ is direct about why: "even when patients correctly say when and how much medicine they will take, many will make mistakes when asked to demonstrate the dose."

AHRQ also recommends chunking: give a small piece, check it, then move on. It shares one clinic's experience that teach-back did not make visits longer.

Here is a sentence to hand the nurse. "Please use teach-back with me, and ask me to show you rather than tell you."

AHRQ describes this as "a common practice that involves encouraging patients to bring all their medicines and supplements to their visit and reviewing them."

What to bring:

• Prescriptions and over-the-counter medicines
• Vitamins, supplements, and herbal products
• Creams, liquids, injections, and inhalers

Bring the bottles and the pill organizer itself, not just a list. AHRQ describes a clinic that found a double dose of a heart medicine only because the bottles were in the room.

The stakes rise in cancer care: oral chemotherapy, anti-nausea drugs, steroids, and blood thinners all run on shifting schedules.

MedlinePlus gives rules that do not depend on reading.

• Tie doses to things you already do: "Take medicines with activities that are part of your everyday routine."
• Keep them in sight: "Keep your pillbox or medicine bottles near the kitchen table."
• Build a chart that lists "each medicine and the time that you take the medicine."

Ask the provider "what to do if you miss a dose or forget to take your medicines," and get that answer before the first missed dose, not after.

Two asks for the pharmacy: large-type labels, and one pharmacy for everything so a single pharmacist sees the whole list.

The National Library Service for the Blind and Print Disabled is run by the Library of Congress. It is a free braille and talking book library service. It serves people with temporary or permanent low vision or blindness, or a physical or perceptual disability that prevents them from reading or holding the printed page. The Library says this includes people with reading disabilities.

Read that again. A reading disability counts. So does a temporary one. Books come in braille or audio, mailed to your home for free or downloadable.

If using a phone by voice is the barrier, dial 711. The FCC describes telecommunications relay service as letting "persons with a hearing or speech disability to use the telephone system via a text telephone (TTY) or other device." It is "fast, functional and free."

For cancer questions, NCI runs the Cancer Information Service at 1-800-4-CANCER (1-800-422-6237), Monday to Friday, 9 a.m. to 9 p.m. Eastern. There is also live chat and email at NCIinfo@nih.gov. NCI calls it "a free and confidential service."

Whatever format you use, these lines have to be in it. Put them on a card or a voice memo.

Call 911 or go to the nearest emergency department for:

• Chest pain or trouble breathing.
• Heavy bleeding, or bleeding that will not stop.
• Black or tarry stool, or vomit that is bloody or looks like coffee grounds.
• Sudden confusion, or being hard to wake.
• Sudden inability to pass urine at all.

Use 711 relay if you cannot make a voice call.

Call your cancer team right away, day or night, if you are in treatment and have:

• Temperature of 100.4 degrees F (38 degrees C) or higher. CDC says to call your doctor right away. NCI says infections during cancer treatment "can be life threatening and require urgent medical attention."
• Shaking chills, a stiff neck, a sore throat, new mouth sores, or burning when you pass urine. Call even if your temperature is normal.
• Redness, swelling, or fluid where a line or port enters the skin.
• Any other sign of infection.

If you cannot reach your team quickly, go to the emergency department. Tell them you are in cancer treatment. Ask a nurse to write the after-hours number in large type before you go home.

• A qualified interpreter for consent, chemotherapy teaching, and discharge.
• The clinic's language access plan.
• The instructions as a plain digital file that works with a screen reader.
• Extra appointment time as a communication accommodation.
• Teach-back, using the show-me method for every drug.
• A brown bag review at the next visit.

• Health Literacy Basics — CDC.
• Plain Language — Digital.gov.
• Section 1557: Meaningful Access for People with Limited English Proficiency — HHS.
• Effective Communication — ADA.gov.
• Tool 5: Use the Teach-Back Method — AHRQ.
• Tool 8: Conduct Brown Bag Medicine Reviews — AHRQ.
• Taking Medicines — MedlinePlus.
• National Library Service for the Blind and Print Disabled — Library of Congress.
• 711 Telecommunications Relay Service — FCC.
• Contact Us — National Cancer Institute.
• Infection and Neutropenia — National Cancer Institute.
• Watch Out for Fever — CDC.