Home Health Care During Cancer Treatment

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 of these have to line up.

1. A face-to-face visit. Medicare requires that "a health care provider (like a nurse practitioner) must assess you face-to-face before certifying that you need home health services." A phone call does not count.
2. You are homebound. Medicare defines this two ways: "leaving your home isn't recommended because of your condition," or "you have trouble leaving your home without help," and you are "normally unable to leave your home and leaving takes a lot of effort." Going out for chemotherapy or radiation does not break homebound status. Neither does church or a haircut.
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. Medicare describes this as up to 8 hours a day of combined services, capped at 28 hours a week, or up to 35 hours a week when short-term medical need justifies it.
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, plus injectable osteoporosis medication.

A home health aide is covered too, but only while you are also receiving skilled nursing or therapy. When the nursing visits stop, the aide stops. That single rule causes more surprise than any other part of the benefit.

Medicare also says the agency "will talk to your doctor or other provider about your care plan and keep them updated on your progress," and that staff should "visit you 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 most of what an exhausted family actually needs. Meals, cleaning, overnight sitting, and help with bathing are usually paid privately, by Medicaid in some states, by long-term care insurance, or by an Area Agency on Aging program. Ask the hospital social worker which of those exist in your county before discharge, not after.

For covered home health services, Medicare charges nothing out of pocket. Durable medical equipment is different. For items like a hospital bed, walker, or oxygen equipment, you pay "20% of the Medicare-approved amount after you meet the Part B deductible."

Two written notices exist, and both matter.

The Home Health Change of Care Notice, form CMS-10280, is used to tell people in Original Medicare about "plan of care changes." The agency must give it in writing before it reduces or stops an item or service. If your nurse visits are dropping from three a week to one, you should get paper.

The Notice of Medicare Non-Coverage comes when all covered services are ending. Medicare requires it "at least 2 days before all covered services end," and it must explain "how to appeal if you think the services are ending too soon."

You can then 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 timeframe listed on the notice." The number is printed on the notice. This is a real, fast, free process, and people routinely skip it because the notice looks like junk mail. It is not junk mail.

When the nurse is ordered, ask the oncology team to write the order for what you actually face. Common examples during cancer treatment: 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, injection teaching for growth factor or blood thinner shots, nausea and pain medicine setup, and safe handling of body fluids in the days right after chemotherapy.

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.

The Centers for Disease Control and Prevention (CDC) is blunt about fever during chemotherapy: "Call your doctor immediately if you have a temperature of 100.4ºF (38ºC) or higher."

CDC advises keeping a working thermometer where you can reach it, and taking a temperature "any time you feel warm, flushed, chilled, or not well." Do not wait until morning, and do not take acetaminophen first and recheck. As CDC puts it, "if you have a fever, you might have an infection. This is a life-threatening condition, and you should be seen quickly." Tell the emergency staff at check-in that you are getting chemotherapy.

Also call without waiting for uncontrolled pain, new shortness of breath, new confusion, bleeding, 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