New Home-Care Needs After Cancer Hospitalization

A hospital stay can end with three new things at once: oxygen, walking equipment, and a nurse coming to the house. They look like one package. They are not. Oxygen comes from a durable medical equipment supplier. A walker or wheelchair may come from the same supplier or a different one. Home nursing comes from a home health agency. Each has its own paperwork, its own delivery window, and its own after-hours number.

Before discharge, get the company name and phone number for each one on paper. Ask who to call at 2 a.m. if the equipment stops working. That question is often left unanswered until the night it matters.

Oxygen at home comes in three forms, and the difference shows up in daily life.

• An oxygen concentrator pulls oxygen out of room air, so there is nothing to refill while it is running. It depends on electricity, which is its weak point. Most people on a concentrator are supplied with backup oxygen for power cuts, but what you are given and what you are expected to do differs by supplier and by how much oxygen you need. Ask your supplier for a written power-failure plan, and a written fire-safety plan, and keep both where you can find them in the dark.
• Compressed gas cylinders are tanks. Large ones stay in the house, small ones travel with you.
• Liquid oxygen takes less space than tanks and is the easiest form to transfer into a small portable unit. It slowly evaporates, so it drains even when you are not using it.

Battery-powered portable concentrators also exist. They matter if you plan to leave the house or fly.

One rule holds across all three. As MedlinePlus puts it: "Do not stop or change your flow of oxygen. Talk with your provider if you think you are not getting the right amount." The flow rate is a prescription, like a drug dose.

Oxygen does not burn on its own. It makes everything else burn faster and hotter. MedlinePlus gives a distance: keep oxygen 6 feet, about 2 meters, away from open flame or heat.

That list includes more than you would guess. Space heaters, wood stoves, fireplaces, candles, electric blankets, hair dryers, electric razors, and electric toothbrushes all count. In a restaurant, keep the same 6 feet from any flame at the table.

Other rules worth taping to the wall:

• Nobody smokes in a room where oxygen is in use. Post a "NO SMOKING" sign.
• No petroleum jelly or other petroleum-based creams on your face or upper body unless a respiratory therapist says it is fine. Water-based products and aloe are usually the safer choice.
• Keep oxygen away from stovetops and ovens, and away from spattering grease.
• Do not store tanks in a trunk, a box, or a small closet. Under a bed is fine if air moves freely around it.
• Keep cleaning products containing oil, grease, or alcohol away from the equipment.
• Check that smoke alarms work. Keep a fire extinguisher, and more than one if you move around the house with a portable unit.

Medicare Part B covers oxygen systems, the containers that store oxygen, and the tubing and supplies used to deliver it. To qualify, a doctor has to find that you are not getting enough oxygen, that oxygen may improve your health, and that your arterial blood gas level falls within a set range. A doctor's order is required.

The payment structure surprises people. Broadly, Medicare Part B has worked on a rental period after which payment for the equipment itself stops while the supplier continues to provide oxygen and servicing for a further defined period. The exact months, what the supplier must keep providing, and what you pay are set by current Medicare rules and can change, so check Medicare's oxygen equipment coverage page for today's position. Then ask your supplier, in writing, what they will provide, for how long, and what happens when the period ends. None of this applies if you are not on Medicare; other insurers set their own terms.

After the Part B deductible, you pay 20 percent of the Medicare-approved amount. Check that both your doctor and your equipment supplier are enrolled in Medicare and accept assignment. If they do not, you can be billed more, and you may have to pay up front.

Medicare Part B covers durable medical equipment ordered by your provider for use in your home. That includes walkers, canes, crutches, wheelchairs and scooters, hospital beds, commode chairs, and patient lifts. The definition is equipment that stands up to repeated use and is expected to last at least three years. Some items are rented, some are bought, and some become yours after a set number of rental payments. Cost sharing is again 20 percent after the deductible.

Getting the walker is the easy part. The house is the harder part. The CDC's fall prevention checklist is specific and cheap to act on:

• Stairs. Handrails on both sides, running the full length of the stairs. Fix loose or uneven steps. Get a light switch at both the top and the bottom. Carpet firmly attached, or removed and replaced with non-slip treads.
• Floors. Move furniture so the path is clear. Remove throw rugs, or hold them down with double-sided tape or non-slip backing. Tape or coil cords along the wall. Keep everyday items on lower shelves, about waist high.
• Bathroom. Grab bars beside and inside the tub, and beside the toilet. A non-slip mat or stick-on strips in the tub or shower.
• Bedroom. A lamp within reach of the bed. A nightlight along the path you walk at night.

An occupational therapist can do this walk-through with you and put the recommendations in writing, which also helps with equipment orders.

This is the point where most families are caught off guard.

Medicare home health covers part-time or intermittent skilled nursing care, physical and occupational therapy, speech-language pathology, medical social services, and part-time home health aide help with things like bathing and walking. You pay nothing for the covered services. Equipment still carries the 20 percent share.

To qualify, you must be homebound. Medicare means leaving home is not recommended because of your condition, or you have trouble leaving without help, and going out takes a lot of effort. A provider must assess you face to face before certifying that you need the services.

Now the limits. "Part-time or intermittent" usually means up to 8 hours a day of combined skilled nursing and aide time, capped at 28 hours a week. In some cases it can rise to 35 hours a week for a short stretch. Medicare home health does not cover 24-hour care, meal delivery, homemaker services like shopping and cleaning, or custodial personal care when that is the only care needed.

If the plan assumes someone is home the rest of the time, say so before discharge. A home health agency should give you an Advance Beneficiary Notice before delivering anything it expects Medicare will not pay for.

For the gaps, the National Cancer Institute points to Medicaid, the Department of Veterans Affairs, and the Eldercare Locator at 1-800-677-1116. A hospital social worker can start these while you are still admitted, which is faster than starting from home.

MedlinePlus lists these signs that someone on home oxygen is not getting enough. Contact the provider if:

• Lips or fingernails look blue.
• The person is drowsy or confused.
• Breathing is slow, shallow, difficult, or irregular.
• Headaches are frequent.
• The person feels more nervous than usual.

Blue lips, new confusion, or hard breathing should not wait for office hours. If the person is struggling to breathe, call 911.

• Using oxygen at home — MedlinePlus, National Library of Medicine
• Oxygen safety — MedlinePlus, National Library of Medicine
• Using oxygen at home: what to ask your doctor — MedlinePlus, National Library of Medicine
• Oxygen equipment and accessories coverage — Medicare.gov
• Durable medical equipment coverage — Medicare.gov
• Home health services coverage — Medicare.gov
• Check for Safety: A Home Fall Prevention Checklist for Older Adults — Centers for Disease Control and Prevention
• STEADI: Older Adult Fall Prevention — Centers for Disease Control and Prevention
• Home Care Services — National Cancer Institute