Most patients and their loved ones experience a wide range of emotions when confronted with a hospital stay: fear, confusion, anxiety. When a loved one does not have the capacity to make decisions on his or her own, the burden is shifted to the caregiver: a double whammy. Even more emotions come into play: doubt, guilt and heightened uncertainty about doing the right thing on behalf of another person.

Challenge #1: Navigating a hospital

The hospital is a world and environment unto itself: health professionals of all kinds and other staff bustling about purposefully, super busy and usually overworked. Then there is the baffling language particular to the hospital:  a jumble of scientific and medical terms, Latin and abbreviations. These days there are so many types of hospital personnel, each with a specific role in providing patient care and conducting the complex business of the modern health care facility. In teaching hospitals, students, interns and residents are on the front lines interacting with patients, families and caregivers. Yet, these often attentive and informed professionals are not in charge of high level decision-making so a conversation with them about patient care is only a first step.

Challenge #2: Knowing the basics

Once in hospital, both the caregiver and the patient can easily become overwhelmed. Here are some general tips to help the former successfully navigate the inpatient stay and hopefully, feel a little bit more at ease:

• Bring a list of the patient’s medications, allergies and list of current and past medical illnesses and surgeries when you go to the Emergency Room. So much “history” can be gleaned from this information and having it in written form will spare you from repeating it multiple times when different members of the care team try to find out about existing and past conditions.
• Ask every hospital provider and staff person to identify themselves and their role in the patient’s care.
• Find out which doctor is in charge of the patient’s care. If there is a complicated medical situation or there is difficulty making a diagnosis, there may be many “consultants” weighing in and giving opinions, but there will always be one doctor who bears overall responsibility. Remember also that residents –no matter how knowledgeable, communicative and helpful they may be– are never in charge of the patient’s care.
• Do not assume that the doctors and nurses are speaking to each other. It is appropriate to confirm (by asking politely) that information about care is being passed between the different professionals.   
• Don’t be complacent:  medical errors happen. It is incumbent upon you to be watchful during a hospital stay and to not let down your guard. A prime source of medical mistakes happen through infections, so make sure you ask if the provider or staff person touching the patient or medical equipment has washed his or her hands.
• Observe the principle of “shared decision-making”. Tests, procedures and treatments should be made in concert with the health care providers, which means that you, the caregiver, are an active participant in this process.  It is reasonable for you to ask if there is a less invasive/painful/expensive way to receive treatment or undergo diagnostic testing. This includes surgery!

Challenge #3: The double challenge

Special populations such as patients with dementia or cognitive compromise need extra attention. Hospitals can be a very difficult and even dangerous place for patients with cognitive loss or dementia.  When patients with these issues are taken out of their normal environment, they often become more confused and sometimes agitated. If you are a caregiver, here are a few things that you can do:

• If the patient has dementia, tell the doctors and nurses if confusion or agitation has occurred on prior hospital stays so that staff can anticipate and alter the environment to decrease problems. It is important to make sure these patients are placed near a window so they can distinguish between daytime and nighttime. It is also important to make sure they have their eyeglasses if they wear them at home, and hearing aids if they need them.  During the daytime, it is also possible for the nurse to place the patient in a chair by the nursing station to keep a closer eye.
• Some hospitals have a large room for four or more patients with cognitive loss who need enhanced observation so that they can be kept safe. Some other hospitals also have ACE (Advanced Care for Elders) units. These units use a multidisciplinary approach to help prevent the decline which elderly patients can have in the hospital. If the patient has dementia or displays confusion, be sure to ask to have him or her moved to an ACE unit if there is one, and as appropriate to the patient’s other medical needs.
• Has your family member been hospitalized before and had episodes of delirium?  It is important to share this information. The health care team will be most successful at working with you if they understand the patient’s baseline (how he or she was before admission).  The best way to prevent delirium is to anticipate it in advance and prevent it as best as possible. Patients receiving pain medication or sedatives are at risk as well. To prevent delirium, it is very important to control the patient’s environment to optimize orientation.  Again, day versus night cues are extremely important, so be aware that patients separated from a window by a curtain are not getting these cues. At-risk patients will also need to have as much of their “faculties” as possible to keep them oriented; glasses, dentures, and hearing aids will help prevent delirium.  
• Finally, here are some steps caregivers can take to help prevent delirium in an at-risk patient: educate all health care providers and staff at every shift change about the patient’s risk for delirium, advocate for the patient to be moved to a bed by the window, be sure to frequently reorient the patient, and consider asking for a geriatric consultation if you find that the patient is confused and sometimes restrained

Challenge #4: Learning to say “NO”

As a final lesson learned, I would include the usually unknown fact that patients are not obliged to receive the treatment or undergo the tests or procedures that is standard of care. Here is an illustration of this principle, and my personal account as a caregiver:

My father Donald has cognitive loss, and although he can understand complex concepts, he needs help with remembering things and defers to me for medical decisions.  When he was admitted to the hospital with lower gastrointestinal bleeding, the doctors in charge of his care recommended that he have a colonoscopy to determine the source of the bleed. The most difficult part of a colonoscopy is the prep, which requires many frequent and often sudden trips to the bathroom. Given that my dad’s bleeding had stopped, I made the decision on his behalf but with his agreement, to forego both the prep and colonoscopy. I believed that with his restricted mobility, getting out of bed and back and forth to the bathroom would be too disruptive and anxiety-producing. I also sought the opinions of the geriatrician and GI doctors, who ended up agreeing that this was the best course of action. However, had I not raised the possibility that we would not “follow protocol”, my dad would have undergone the test. Our instincts were correct: he was fine. No fishing expedition necessary. It’s all about thinking through what is best for the patient and not just imply following orders. However, it is important to get the care team of doctors and nurses on your side to explain the reasoning that might lead to a decision.

Knowledge is power! 

All things considered, caregiving can be very fulfilling, but it is a big responsibility to undertake, and it usually comes at an emotional and physical cost. As someone that has been a caregiver herself, I wrote this article with the purpose of helping both the patient and the committed caregiver navigate a hospital stay. In the end, the more you understand about it, the better you will be able to advocate and ensure a safer and more favorable inpatient experience. And to make the best of the experience for yourself, too.

Sara L. Merwin

Sara Merwin, MPH, is Director of Clinical Research, Assistant Professor of Research in the Department of Orthopedic Surgery and Associate in the Department of Medicine at Montefiore Medical Center/Albert Einstein College of Medicine. In their book THE INFORMED PATIENT: A Complete Guide to a Hospital Stay, Karen A. Friedman, MD, and Sara L. Merwin, MPH, offer hands-on advice about how patients, health care providers, and medical staff can work together to achieve good outcomes. Through anecdotes, tips, sidebars, and clinical scenario vignettes, the book presents ways to enhance and optimize a hospital stay, from practical advice on obtaining the best care to dealing with the emotional experience of being in the hospital.