Home Health Care During Cancer Treatment

This page is for patients and families told that "home health" will be set up after a hospital stay or during treatment. It explains what Medicare home health covers, what it does not, and what to do if visits are cut.

Families often hear "we'll set up home health" and picture someone in the house all day. That is not what the benefit is. Medicare home health is a narrow, medical, part-time service with written rules. Knowing those rules before the discharge planner calls saves a lot of anger later.

Medicare defines home health as "a wide range of health care services that you can get in your home for an illness or injury," meant to "help you get better, maintain your current condition or level of function, or slow your rate of decline."

The word doing the work there is health. Home health is nursing and therapy. It is not household help, and it is not a companion. Those are different services, usually paid for a different way.

To get the Medicare benefit, all five of these have to line up.

1. A face-to-face visit. A doctor or other provider, such as a nurse practitioner, must see you in person and confirm that you need home health care. A phone call does not count.
2. You are homebound. Medicare says two things must both be true. First, leaving home is not recommended because of your condition, or you have trouble leaving home without help. Second, you are normally unable to leave home, and leaving takes a lot of effort. You may leave home for medical treatment. You may also make short, infrequent trips for non-medical reasons, such as religious services. If you are unsure whether your outings count, ask the agency.
3. You need a skilled service. Nursing or therapy, ordered by a provider. Help with bathing alone will not qualify you.
4. The need is part-time or intermittent. In most cases, Medicare says this means skilled nursing and home health aide services up to 8 hours a day combined, for a maximum of 28 hours a week. You may get more frequent care for a short time if your provider decides it is necessary. That is less than 8 hours a day, and up to 35 hours a week.
5. The agency is Medicare-certified. Not every home care company is.

Under the benefit, Medicare covers part-time or intermittent skilled nursing, physical therapy, occupational therapy, speech-language pathology, and medical social services. It also covers durable medical equipment and medical supplies for use at home. It covers injectable osteoporosis drugs for women who meet certain criteria.

A home health aide is covered too, but only while you are also getting skilled nursing, physical therapy, speech-language pathology, or occupational therapy at the same time. When that skilled care stops, the aide stops.

Medicare also says agency staff will talk to your doctor or other provider about your care plan and keep them updated on your progress. Staff should visit as often as your provider orders. Patient and caregiver education is part of covered skilled nursing. Use it. This is your chance to be taught a task properly rather than guessing at 2 a.m.

Medicare states plainly that the benefit "doesn't pay for: 24-hour-a-day care at your home; Home meal delivery; Homemaker services (like shopping and cleaning) unrelated to your care plan; Custodial or personal care that helps you with daily living activities (like bathing, dressing, or using the bathroom), when this is the only care you need."

Read that list twice. It covers much of what a tired family needs. Medicare does not pay for these under this benefit. Ask the hospital social worker what other help exists in your area. Ask before discharge, not after.

For covered home health services, Medicare says you pay nothing. Medical equipment is different. After you meet the Part B deductible, you pay 20% of the Medicare-approved amount for covered equipment. Before care starts, the agency should tell you what Medicare will pay and what you may owe.

Two written notices exist, and both matter.

The Home Health Change of Care Notice, form CMS-10280, tells people in Original Medicare about plan of care changes. CMS says the agency must give written notice before it reduces or stops an item or service. If your nurse visits drop from three a week to one, you should get this paper.

The Notice of Medicare Non-Coverage comes when all covered services are ending. Medicare says your agency will give it to you at least 2 days before all covered services end. If you do not get it, ask for it. It tells you when services end and how to appeal if you think they are ending too soon.

You can ask for a fast appeal from the Beneficiary and Family Centered Care Quality Improvement Organization, or BFCC-QIO. Medicare says to call the BFCC-QIO within the time listed on the notice. The notice explains how to reach them. Do not set it aside.

When the nurse is ordered, ask the oncology team to write the order for what you actually face. Medicare lists wound care, patient and caregiver education, intravenous therapy, and injections among covered skilled nursing services. Examples to ask about:

• Central line or port dressing changes and flushes
• Teaching on a chemotherapy infusion pump you go home wearing
• Surgical wound or drain care
• Ostomy care and pouch changes (an ostomy is a surgical opening that lets waste leave the body into a pouch)
• Injection teaching for growth factor or blood thinner shots
• Nausea and pain medicine setup

Have the nurse demonstrate the task, then watch you do it, then leave written steps and a phone number for after hours. That teach-back sequence is the point of the visit.

Some problems at home cannot wait for the next nurse visit.

Fever. The Centers for Disease Control and Prevention (CDC) says to keep a working thermometer within reach. Take your temperature any time you feel warm, flushed, chilled, or not well. Call your care team right away, day or night, for a temperature of 100.4°F (38°C) or higher. CDC says fever may be the only sign of an infection, and an infection during chemotherapy can be life-threatening. Do not wait until morning. NCI says to talk with your doctor or nurse before you take acetaminophen or another fever medicine, because it can hide signs of a more serious problem. If you go to the emergency room, tell the staff at check-in that you are getting chemotherapy.

Infection signs, even with a normal temperature. If you are on chemotherapy, had a stem cell transplant, had CAR T-cell therapy, or have low white blood cell counts, call your care team right away, day or night, for any sign of infection. NCI lists chills, a cough or sore throat, sores or a white coating in the mouth, pain when you urinate, and swelling or redness where a catheter enters your body. CDC adds a new or worsening cough, shortness of breath, diarrhea or vomiting, new pain, and redness, soreness, or swelling anywhere, including a surgical wound. A normal temperature is not permission to wait.

• Call 911 or go to the nearest emergency department if you have trouble breathing, chest pain, sudden confusion, or you are hard to wake.
• Call 911 or go to the nearest emergency department if you have black or tarry stool, blood in your vomit or vomit that looks like coffee grounds, or heavy bleeding.
• Call 911 if bleeding from a surgical wound, a drain, or a line will not stop. Press firmly on the spot while you wait.
• Call 911 or go to the nearest emergency department if you suddenly cannot pass any urine.
• Call your care team or home health agency right away if you have pain that is not controlled, a fall, or any line, tube, wound, or ostomy problem you have not been taught to handle.

See also Practical Help for Caregivers, Managing Medications as a Caregiver, and Palliative Care.

• https://www.medicare.gov/coverage/home-health-services
• https://www.medicare.gov/what-medicare-covers/whats-home-health-care
• https://www.medicare.gov/basics/your-medicare-rights/your-protections
• https://www.cms.gov/medicare/forms-notices/beneficiary-notices-initiative/ffs-hhccn
• https://www.cdc.gov/cancer-preventing-infections/patients/fever.html
• https://www.cancer.gov/about-cancer/treatment/side-effects/infection
• https://www.cdc.gov/cancer-preventing-infections/patients/symptoms.html
• https://medlineplus.gov/ency/patientinstructions/000593.htm
• https://medlineplus.gov/ency/article/000045.htm
• https://www.niddk.nih.gov/health-information/urologic-diseases/urinary-retention/symptoms-causes