Managing Several Medical Devices at Home

The FDA defines a home use medical device as one "intended for users in any environment outside of a professional healthcare facility." In cancer care they arrive one at a time and stack up fast: a PICC or port, a feeding tube, a nephrostomy or biliary drain, a surgical drain, an oxygen concentrator, a syringe driver or infusion pump, a pressure-relieving mattress, a hoist, a commode, a finger probe.

The FDA puts the problem plainly: "complex medical devices are used more frequently in the home, many times under unsuitable conditions." Nobody designed your hallway around a concentrator. Nobody checked whether the bathroom door is wide enough for a frame.

Each device also came with its own team, its own supplier, its own out-of-hours number and its own set of rules. The danger is not usually one device failing. It is the seams between them.

These signs matter whatever device caused them.

Call emergency services (911 in the US, 999 or 112 in the UK) if:

• Temperature is 38.0 °C / 100.4 °F or higher, or there are shaking chills. The CDC uses 100.4 °F and the NCI uses 100.5 °F. Use the lower number. NCI lists swelling or redness where a catheter enters the body among the signs of infection, and says infections during cancer treatment can be life threatening and require urgent medical attention — so say on the call that a line, drain or tube is in place.
• Sudden breathlessness, chest pain, coughing or confusion during or just after using a central line. Close the clamps on the line and say the words "possible air embolism" to the dispatcher, and again to the crew when they arrive. Naming it matters, because it changes what they do on the way. Do not try to reposition the person yourself or give oxygen — the positioning and high-flow oxygen described in clinical references are hospital treatments delivered by trained staff with monitoring, and moving someone who is collapsing can make things worse. Stay with them and keep the line clamped.
• An oxygen reading of 88 percent or lower on a finger probe, or blue lips. MedlinePlus says to seek immediate medical attention if a saturation falls to 88 percent or lower.
• Heavy bleeding from any site, line or tube.
• Severe belly pain with a hard, swollen abdomen in anyone with a feeding tube, especially with fever, and especially after a tube has been replaced or a feed restarted. Stop the feed. StatPearls says that combination should raise suspicion that the tube is sitting in the abdominal cavity rather than the stomach, that feeds should be stopped immediately, and that it needs prompt investigation.

Call the team that owns the device the same day if:

• Any tube or drain has come out. Do not push anything back in. Cover the opening with clean dry gauze and be seen within hours. StatPearls says the gastrostomy tract begins to close anytime between 8 and 24 hours after the tube is out and narrows further over time, and that after 24 hours no blind, forceful attempt at replacement should be made. If the tube was placed less than four weeks ago, it says replacement should not be attempted without a surgical opinion at all, because of the risk of perforation.
• A drain or bag suddenly stops filling, or the daily total drops sharply.
• Drainage turns cloudy, thick, or foul-smelling.
• Any site is red, hot, swollen, or leaking yellow or green fluid.
• A finger probe reads 92 percent or lower at rest, which is MedlinePlus's threshold for contacting your provider.
• An alarm sounds that you cannot explain or silence.

Write a single sheet for each device and keep them together where a paramedic would find them, usually by the front door or on the fridge.

Each sheet needs: what the device is and its size or model, the date it was put in, which team owns it, the daytime number, the out-of-hours number, what normal output or normal function looks like, what you are trained to do, what you must never do, the date of the next planned change, and the supplier plus how long reordering takes.

That last line prevents more crises than any other. Supplies run out on a Friday.

Do a single sweep at the same time each day rather than reacting device by device. Look at every site for redness, swelling or leaking. Record every output. Check every alarm light and battery. Count the supplies you used and note anything below your reorder line. Write down anything that felt different.

Keep it on one sheet with the date. A week of your own numbers tells a clinician far more than a description of today.

The FDA lists what actually goes wrong at home, and none of it is exotic.

• Power. FDA's checklist asks whether you need electricity, running water, telephone or computer connections to run your device, and says to keep extra batteries and know how to replace them. Have emergency phone numbers for the supplier, the homecare agency, the doctor and the manufacturer, including the after-hours numbers, and make sure you know what to do if your device fails. FDA also notes that older homes may not have the electrical outlets some medical devices need.
• Water. FDA says clean, running water is critical to the use of a medical device in the home. If it is cut off, ring the supplier before improvising.
• Heat, humidity and dust. Extreme heat and humidity can make a device behave in unexpected ways, and dust getting inside can change how it works. Keep machines off carpet, out of direct sun, and away from radiators.
• Pets. Pets interfere with devices directly and add contamination. Keep them off the bed during a feed or a dressing change, and stop them chewing cords.
• Children. Children change dials, settings and on/off switches. They should not play with tubing, vents or cords.
• Falls. Clutter, loose carpet and slippery floors cause falls. Tubing across a floor is a trip line. Run it along skirting boards, and never across a doorway.
• Lighting. Poor lighting causes injuries, especially falls. Put a lamp within reach of the bed and a night light on the route to the toilet.
• Noise. Loud noise stops you hearing whether a device is running properly. Turn the television down during a feed or an infusion.
• Fire and wiring. Devices that overheat or short-circuit raise the risk of a house fire. Do not chain extension leads together, and check the house wiring can carry what you have plugged in.

MedlinePlus's instructions for changing a PICC line dressing say to wash your hands for 30 seconds with soap and water, washing between the fingers and under the nails, then dry with a clean paper towel. Do that before and after touching any site, and again between devices. Never move from one site to another without washing.

Give each device its own labeled box of supplies, and never let syringes, wipes or dressings drift between them. Do the cleanest task first. If someone is coughing or has a cold, they should not be doing dressings that day.

Say it out loud to the team: "we cannot do this safely at home." That is a clinical fact, not a failure. Ask for home nursing hours, more hands-on teaching, or a respite admission.

The NCI is direct about the cost of caring. It lists the changes caregivers often have: fatigue, a weaker immune system, sleep problems, slower healing of wounds, higher blood pressure, changes in appetite or weight, headaches, and anxiety, depression or other mood changes. It adds that if you don't take care of yourself, you won't be able to take care of others. NCI also says that if stress-related changes last more than two weeks, talk to your own doctor.

If a device fails or causes harm, FDA says to report it to your supplier and to the FDA on 1-800-332-1088. That report is how the next family avoids the same fault.

• FDA — Home Healthcare Medical Devices: A Checklist
• FDA — Unique Considerations in the Home
• FDA — Frequently Asked Questions About Home Use Devices
• FDA — Home Use Devices
• National Cancer Institute — Support for Caregivers of Cancer Patients
• National Cancer Institute — Infection and Neutropenia during Cancer Treatment
• CDC — Watch Out for Fever (Preventing Infections in Cancer Patients)
• MedlinePlus — Pulse Oximetry
• MedlinePlus — Peripherally inserted central catheter: dressing change
• NIH StatPearls (NCBI Bookshelf) — Gastrostomy Tube Replacement
• NIH StatPearls (NCBI Bookshelf) — Venous Gas Embolism