Surviving a hospital stay is no mean feat, especially given staffing cuts and changes in practice patterns over recent years. I’ve just spent the past week in Iowa helping my 90 year old aunt* navigate the system. I honestly don’t know how someone without a knowledgeable and assertive advocate survives, so I put together these tips, based on years of experience both as a physician and caregiver. Even in a “good” hospital with good staff, we encountered significant problems, though they paled in comparison to the bad care my mom got in 2008 in three metropolitan D.C. hospitals.
One in seven Medicare patients in hospitals experiences a medical error. Almost half of the errors were preventable. Estimates are that up to 440,000 people die each year after suffering a medical error in the hospital, making this the third leading cause of death, just behind heart disease and cancer. Hospital acquired infections sicken an additional 1 in 25 patients.
The essentials, especially if you don’t have an advocate with you:
- Know your medicines and allergies. Ask what medications you are getting and what they are for.
- Keep a list of your medical problems.
- Question authority. Question what is being done and why. Does it make sense to you? If not, get more information. Give your relative or advocate permission to see your medical records and labs.
- Know that you have the right to refuse tests or medications.
- Insist that health care workers use hand sanitizer or wash their hands before touching you.
- Get IVs and tubes or catheters out as soon as possible. Ask your doctor if you still need them.
- Keep notes.
- If you feel at all unsteady, ask for help getting to the bathroom, especially at night. Falls kill.
- If you are concerned about your care, speak with the unit manager, hospital ombudsman, or Risk Management.
- Try to get a discharge plan you feel safe with. Hospitals will try to rush you out.
The details of survival skills follow.
Basics – pre-hospital preparedness
Keep a list of your medicines and allergies in your wallet or purse and the nature of any adverse reaction.
Do NOT say you are allergic to penicillin or other if you aren’t, or if you have had a minor intolerance such as an upset stomach, or just because someone in your family had a reaction years ago. True allergies that are important to relay are hives, shortness of breath, anaphylaxis (shock), and rash. Listing unnecessary intolerances will likely lead to your receiving more toxic antibiotics than necessary, or ones with more side effects.
Know what your home medicines are and why you are taking them. Include over-the-counter meds and supplements, as they may have serious drug interactions with other meds.
It’s helpful if you have a “problem list” in your wallet, with your major problems noted—like heart disease, diabetes, and high blood pressure. Listing every minor illness is overkill.
Advocacy
Advocates are essential. Don't leave home without one, if you can.
If you lack one, ask questions about what is being done and why. Does it make sense to you? If not, get more information. Tell the hospital your relative or advocate has permission to see your medical records and labs and to ask detailed questions of your team to avoid them hiding behind HIPAA privacy regulations.
Before needed, everyone should make a living will and appoint a durable medical power of attorney to make decisions for you if you are incapacitated. Know that in some states, a living will won’t be honored if a family member opposes it. Also, living wills won’t generally kick in if there is any glimmer of hope. That’s why I encourage the 5 Wishes form to guide discussion, and making explicit what your wishes are—especially regarding if or how long you might want mechanical ventilation, dialysis, or feedings through a tube placed in your stomach. I see a lot of antibiotics used in futile care, fueling resistance, because families (and some physicians) don’t understand that they will not always help the patient. It’s a difficult and nuanced exercise.
While some keep a living will and important documents in their safe deposit box, it is useful to have a copy available. I keep copies of durable medical power of attorney for people who have named me as such in a scanned pdf on my laptop. You can photo important documents and keep them on your cell phone as well.
Know that some hospitals will not honor your advance directives—particularly a problem with Catholic facilities. Sacred Heart Hospital in Cumberland, MD would not tell me what “Living wills will not be honored if in conflict with hospital policies” meant. This is against Medicare and Medicaid regulations, as the Patient Self Determination Act requires that patients be educated on their right to accept or refuse medical care. This hospital received a well-deserved citation from JCAHO. Pregnant women are also at risk of having their wishes ignored as some religious conservatives place a fetus’ rights higher than the woman’s.
If you have the luxury of time, try to research local hospitals and physicians, not easy to do. Sometimes you can’t, and end up at the nearest hospital, and will just have to make do unless you need transfer to a hospital with more specialized services you might require (e.g. trauma, chemotherapy). If you do have time, there are various ratings of hospitals. While I don’t put a great deal of faith in them, the information can be helpful in alerting you to potential problems.
Safety in your room
Learn who is who on your team, and what their roles are. Keep a list. Which physician is in charge of your care? Who is your nurse and your aide, and who is in charge of the unit? Can you stay with your physician, or will you be assigned a rotating series of hospitalists, as is increasingly common and problematic, because of lack of continuity? Insist on seeing a specialist if you feel that is necessary. It is your right, though many primary physicians will balk at that.
Keep notes and jot down questions for each of your physicians. You should expect to hear different answers, as each has their own perspective and experience, so ask questions to try to get consensus and understand. Be prepared with your list when your doctors make rounds.
Your nurse and aide will be your primary caregivers and are essential to your health and comfort. Try to treat them kindly and respectfully, and they will likely go out of their way to help you be comfortable. Learning their names will also show your respect for them, and thanking them for their efforts will go a long way.
Pictures of family are important, not just to cheer the patient, but to remind the staff that this old patient is a real person—parent, grandparent, whatever—and was recently vibrant and active, with a loving family. It makes a huge difference. I showed staff photos of my aunt giving a keynote speech to 500+ people just days before she became ill for just this reason.
Medication errors Ask if your home meds are being continued. If not, what new medicines are being given to you and what are they for? If you are strong enough to do so, note them down, as well as other treatment details. You must know what you are getting and why—not just “an antibiotic.”
When drugs are being given, verify that they are the right drug and dose that you expect; if they are not, ask why there is a discrepancy. According to the Institute of Medicine, at least one medication error occurs for every admitted patient.
Ask what side effects might occur and what should be reported.
Falls Being in a strange environment, especially at night or when ill can be quite disorienting. Get help when getting up, especially at night or to go to the bathroom. Falls are a huge problem in hospitals, accounting for 700,000 to 1 million injuries each year in the U.S.
Invasive lines and hospital-acquired infections
When someone is critically ill, a Foley catheter will likely be placed in the bladder to monitor the urine output. This is critically valuable information. As soon as the patient is better, the indwelling catheter should be removed, as it poses an unnecessary risk for infections, which can be life-threatening and add risks of antibiotic related complications.
Catheters should not be used just for convenience, as is often done with the elderly, as the risk of infection is up to 10% per day. Ask your doctor every day if the catheter can be removed.
Too often, PICC lines (Peripherally inserted central catheters) are being placed, often at the urging of hospitalists or discharge coordinators, anxious to please the Utilization Review masters. Again, PICCs should not be placed hastily, as they carry complications including blood clots and infection. It can take several days before it is clear how long a person might need to be on intravenous (IV) antibiotics. Often, I will choose an oral antibiotic rather than subjecting patients to a PICC, unless they have something that will clearly need prolonged IV antibiotics, like a prosthetic joint or heart valve infection. A shorter midline catheter is safer and can stay in for up to a month.
Insist that health care workers use hand sanitizer before touching you. Some hospitals are calling this a “Foam In, Foam Out” procedure with an alcohol-based foam. Your physicians are likely to be the worst offender. It’s hard, but remind them to use the hand sanitizer or wash before they examine you. It’s probably a good idea to ask them to wipe off their stethoscope with a disinfectant as well.
While it is hard to be assertive and remind staff to wash or use sanitizer, it is critically important to your care. Antibiotic resistant infections strike 2 million Americans per year and kill 23,000.
Procedures, other in-hospital complications
Bed-bound people are at risk of clots in their legs (DVT, or deep-venous thrombosis) or lungs (PE, or pulmonary embolus). Ask if you should have sequential compression stockings or a blood thinner.
If invasive procedures are recommended, like bronchoscopy (passing a fiberoptic scope into the lungs) to check for a mucous plug causing atelectasis, ask what the alternatives are. For example, could intensive respiratory therapy treatments be tried first?
Pressure sores (decubiti) are big problems for people who are bed-ridden and weak. Patients should be turned at least every two hours. Pillows should be placed under calves, so that heels do not rest directly and rub on a hard bed. That and the sacrum are the first places skin breakdown occurs. Sometimes special mattresses need to be ordered; be attentive and assertive at earliest signs of redness or pain.
Fluid overload can be an issue. IV fluids are started when someone comes in, especially if they have a fever, and then can sometimes continue until a patient is gurgling with fluid overload. Once you are better and able to eat and drink, ask your physician if you still need an IV and fluids.
Nutrition is always a problem in hospitals. People are ill and have poor appetites, and are then presented with unappealing food—often too white: white bread, mashed potatoes, iceberg lettuce, puddings, etc. Even when you are feeling better, hospital food generally seems designed to increase the hospital census, being unhealthily anemic and fat-laden.
Antibiotics are often given prophylactically before certain procedures, like a joint replacement. They should be given within an hour of surgery—not hours before or after. You might have to ask or remind staff.
A proton pump inhibitor (e.g., Nexium, Prilosec, Prevacid, Protonix) is often given for heartburn, but these drugs can increase your risk of infection, so use an old-fashioned antacid if you can.
Misdiagnosis
Sometimes many different things can cause similar symptoms. For example my aunt, admitted with influenza, had worsening shortness of breath, wheezing, and inability to lay flat. The possibilities (differential diagnosis) included pneumonia, atelectasis (lung not fully expanding from mucous plugging or not taking a deep breath), a blood clot to her lung, or congestive heart failure. It required multiple discussions between her physicians and me to sort this out and ensure proper treatment.
Unnecessary tests
Many tests are subject to interpretation. Radiology reports are notoriously nebulous and “CYA”, often reading, “Increased markings consistent with congestive heart failure, atelectasis, or infiltrate. Clinical correlation required.”
More tests are not always better, and can lead to further interventions and risks. Ask if a test, especially an x-ray or intervention is really needed, and what it will change. Know your options.
Discharge planning
Hospitals profit by discharging patients as soon as possible, whether or not they are ready. They will not wait for someone to feel well enough. They have a low threshold for urging nursing home placement. Important alternatives to nursing homes include getting companions in the home—perhaps a nursing or therapy student, for example—with home health care, Meals on Wheels, etc.
Another new service is modeled by Full Circle America. One of my friends uses this, enabling her 97 year old mom to remain independent with motion sensors and periodic video monitoring, along with in-person visits.
If you feel you are being discharged before it is safe, you can challenge that (especially if you have Medicare). Every state has a quality improvement organization (QIO)
Taking care of the caregivers
This is not my strong suit…but it is important that the caregiver or advocate get some care, too, including taking breaks to eat more nutritiously, and getting sleep…Go for walks outside if you can for sanity breaks. Find something that brings you comfort—prayer, readings, music, whatever—to have with you for breaks. For me it was mindfulness meditation and getting out in nature.
I hope you find these suggestions helpful. More resources follow.
*details used with her permission
Resources
Good sources of information include WebMD, Medscape, Mayo Clinic and UpToDate, which has a limited free patient information section.
Medical terms—ask folks to speak English
BFCC-QIOs (Beneficiary and Family-centered care QIOs). You can read about them here or find the person to complain to in your state here.
Further reading:
Atul Gawande’s The Checklist Manifesto
A New, Evidence-based Estimate of Patient Harms Associated with Hospital Care
Lisa Bonchek Adams’ blog and tips
Fern Reiss’ The Breast Cancer Checklist has many useful suggestions for anyone with cancer or facing surgery.
