03/09/2025
No one should ever enter a hospital without an advocate. Here are some tips to assist should you be faced with a hospital stay.
Most people 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.
How do you know you’re making the right choices?
Challenge #1: Navigating a hospital
The hospital is a world and environment unto itself: health professionals of all kinds and other staff bustling about. 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 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 care is only a first step.
Challenge #2: Knowing the basics
Once in hospital, be sure to read the forms they ask you to fill out. Being in hospital is easily overwhelming with the lack of disclosure . Here are some general tips to help successfully navigate the stay and hopefully, feel a little bit more at ease: Ask if any medications are given under hospital protocol such as vaccinations.
Bring a list medications, allergies and list of current and past medical illnesses and surgeries when you go to the Emergency Room. Even though most all records have been uploaded into a sharing system you may prefer to write the ministry to keep this information private as this system can be accessed anywhere there is a licensed professional. If you’ve restricted access for privacy reasons, you may want to bring a list “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. Keep a log of those names, they are changed up often and the whole process can become very confusing.
Find out which doctor is in charge of the your or your loved ones 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 people offering treatment –no matter how knowledgeable, communicative and helpful they may be– are never in charge of your it your loved ones 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 communicated and made in consent 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!!!
Caregivers should be part of the decision making process
Challenge #3: The double challenge
Special populations such as people with dementia or cognitive compromise need extra attention. People suffering from stroke or seizures need their advocate to pay close attention in support as the loved one may not grasp the overall picture as they recover. Hospitals can be a very difficult and even dangerous place for people with cognitive loss . When people with these issues are taken out of their normal environment, they often become more confused and sometimes agitated, especially if stroke has occurred . If you are a caregiver or advocate, here are a few things that you can do:
If your loved one 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 people 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. Good social environment with conversation helps, where isolation can be depressing. For those with dementia, during the daytime, it is also possible for the nurse to place the loved one in a chair by the nursing station to keep a closer eye and keep the loved one engaged for better brain stimulation .
Some hospitals have a large room for four or more with cognitive loss who need enhanced observation so that they can be kept safe. Some other hospitals also have ACE for the elderly (Advanced Care for Elders) units. These units use a multidisciplinary approach to help prevent the decline which people can have in the hospital, especially during long stays. If the loved one has had a stroke or seizure, or displays dementia or confusion, be sure to ask to have him or her moved to an ACE unit or ward if there is one, as appropriate to the loved one and 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 your loved ones 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. People receiving pain medication or sedatives are at risk as well. To prevent delirium, it is very important to control the loved ones environment, to reduce upset to optimize orientation. Again, day versus night cues are extremely important, so be aware that people separated from a window by a curtain are not getting these cues. At-risk people 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 loved one: 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 and shared room for interaction, be sure to frequently reorient the loved one, and consider asking for a stroke or brain health protocol for those at risk or geriatric consultation if appropriate if you find that the loved one is confused.
Hospital stays are especially hard for those experiencing dementia and /or are elderly.
Challenge #4: Learning to say “NO”
As a final lesson learned, I would include the usually unknown fact that people 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 husband Dave was witnessed having at least two seizures after one hospital stay in 2021, accompanied with observed hallucinations , never before experienced before he was locked down, while this was expressed in the emergency room in 2023, along with a sudden lack of magnesium after a suggested thyroid surgery, cognitive changes were acknowledged , although he can understand complex concepts, after stroke, emotional changes were reported to ICU staff. He needed help with remembering things and anger was observed during a visit from public health. Dave didn’t believe he had had a stroke and defers to me for witness which was fully reported to the staff of Markham Stouffville Hospital in Ontario, Canada, a non teaching hospital . When he was admitted to the hospital for low magnesium , the doctors in charge of his care recommended that he stay on the cardiac floor for further testing as to why his body was not able to hold his minerals since 2021 after a lock down thyroid surgery to determine the source. They held him for a month and moved him five times to private rooms. We kept asking to be with others for good conversations and mental health, to no avail . The most difficult part of his stay with the hospital was communication. Consults were few and always when I wasn’t there. Being there everyday watching over my husband was absolutely necessary as his saline drip was set to high, edema set in, requiring me to request reduction in fluids. Three days of requests finally got results and he was placed on water pills which resulted in many frequent and often sudden trips to the bathroom. Given that my husband may have been experiencing kidney failure , I made the decision on his behalf to request a list of medications as some medications induce kidney failure ( remdeziver) and there were reports of people reacting badly to hospital protocol Covid hot shots. I believed that with his sudden reduction of bodily liquid, this may have been a factor with possibly sudden release of cholesterol ( cholesterol is what the body uses like a bandage for artery damage) in his arteries to cause him to stroke, which when revived was mentally disruptive and anxiety-producing. He did not know he had died of stroke but his chest hurt from effects of compression after his instantaneous death. In following with test suggestions and requests, they locked him down under Covid protocol and would not allow any information to me, his lifelong partner and caregiver. At this point an immediate letter is important to send to the CEO of the hospital to stop further damage from seizures, stroke and kidney failure, this was the best course of action. However, had I not raised the possibility that we would not “follow protocol”, this may not have happened. I was ignored, my husband was sent for surgery, implanting a heart pace maker without consent from either myself, his long time caregiver or him, who was on a high dose of painkillers for his chest pain after almost 5minutes of compressions . No information or warning from his doctor or the hospital, surgery was about to happen, no time to stop the procedure, ask questions , do research. In hindsight, I believe this was not necessary. It’s all about thinking through what is best for the loved one and not just imply to following orders. However, it is important to get the care team of doctors and nurses on your side if you can arrange a consult to explain the reasoning that might lead to a decision of not opting for routine procedure. If the doctor won’t step up , then a letter is a must. Under the lastest hospital Covid protocols many were negated informed consent before treatment.
It’s okay to say “NO” to a doctor or procedure, however many were not afforded this opportunity under Covid hospital protocols and policy.
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 my story edited in this article with the purpose of helping both the loved one 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 experience. And to make the best of the experience for yourself, too.
Modified to include a true caregiving experience. Information derived from 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 loved ones, health care providers, and medical staff should and can work together to achieve good outcomes. This is a real life case where things went wrong under Covid protocols. Practical advice in obtaining the best care to dealing with the emotional experience of being in and dealing the hospital.
The CEO of Markham Stouffville Hospital has stepped down but the havoc she caused by chosen protocol is lasting. To be aware and informed before a hospital visit is to be forewarned. Do your own research.
