Last Updated on May 3, 2022
Your loved one is in the hospital.
What do you do? How do you navigate the system? How do you advocate for a family member in the hospital?
If you’ve never done it, it can be daunting. Even if you have done it, you may still be challenged from the lack of sleep, anxiety, and stress.
Unfortunately, providers try really hard to provide updates, explain what is happening, and what resources are available, but most don’t have enough time to get family members to a fully comfortable place of understanding.
I can’t imagine going into a hospital alone. Every time I’ve been with my family, I’m thankful I was there to advocate.
Let me tell you what I’ve learned over the years to help you advocate for a loved one in the hospital.
What is an Advocate?
First, let’s define an advocate.
When I talk about an advocate, I am simply talking about a person, family, or friend, who communicates with your care team, asks questions, and puts your best interests first while in the hospital.
There are hospital patient advocates who are employed by the hospital and try to address patient or family members’ concerns. They may also be called patient representatives or social workers.
You can also hire elder care consultants to help.
I’m not talking about those people when I say advocate.
The person I am talking about is someone you already know who you have chosen to help advocate on your behalf.
Why Have an Advocate in the Hospital?
If someone is in the hospital, that means they aren’t doing well.
I know that seems obvious, but if someone is in pain, delirious, or tired, they may not have the ability to ask good questions, speak up when necessary, or remember what is being said.
An advocate can do those things.
They can ask for clarification when something is not understood, push back when they disagree with something, or tell providers what a normal baseline is for a family member.
Below are a few more tangible examples:
- Confusion or Delirium: medical providers don’t know the baseline of where a person started if they have dementia or have declined cognitively. While a provider might think the current state is the current lifestyle, an advocate may be able to describe the baseline of the cognitive decline and tell providers how far a loved one is from that point.
- Allergies or bad reactions with drugs: although allergies are documented in patient charts, people make mistakes. Sometimes staffing is low and patient count is high. Having an advocate around is another set of ears to hopefully catch any mistakes before they happen. Plus, people respond differently to different drugs. If you know a loved one had a bad experience with a certain drug in the past that caused more confusion, you can let the provider know.
- Help get stuff done in the hospital: this can be as simple as moving a food tray when your loved one is done, pulling the blinds down, or helping them order food. Certified nursing assistants are available, but with full hospitals, sometimes it can be challenging to get everything you want when you want it. Getting stuff done could also mean pushing harder for certain tests, getting social work involved, or asking for certain items. For example, my dad “lost” his glasses when getting an MRI in the hospital. He told me they didn’t know where they were. When I arrived, I asked the nurse if she knew where his glasses were. She said they were with the MRI folks and instead of trusting the hospital tube system to send them around, she would go pick them up. They arrived within 10 minutes.
I want to be clear that being an advocate means speaking up, being confident, and kind.
It doesn’t mean being rude, unmoving, and a jerk.
Don’t be like the man I once heard who would not allow the physician to talk, and she had to keep interrupting to say, “I am trying to explain this to you to help it make sense.”
An advocate can help a patient do what they would do under normal circumstances – push for the best care possible.
The Legal Side of Being an Advocate
When I talk about being an advocate, there are a few steps you can take to give yourself more flexibility.
For example, for the hospital to talk with you without the patient, such as calling for an update, they may require the patient to sign a Health Insurance Portability and Accountability Act (HIPAA) release allowing medical providers to share information with you.
Since you never know how things will go in the hospital, I like to do this as soon as possible.
This way if something goes wrong, you have the ability to speak with providers, get updates, and somewhat advocate.
I say somewhat advocate because if you are not a power of attorney, you won’t be able to make medical decisions for your family member if needed. There are times when that is helpful. If you are a power of attorney, I would make sure the hospital has a copy of it on file.
Even if you are not a power of attorney, you can still be vocal, ask questions, and help advocate for a family member.
Lastly, I would ask the providers if there are any other forms that are important to complete.
How to Advocate for a Family Member in the Hospital
Now that you know how I define advocate, why it is important, and what forms you may want to complete, let’s talk about how to advocate for a family member in the hospital.
Ask Questions Until You Understand
Medicine is filled with jargon. Many providers do their best not to use jargon and make it understandable, but they don’t know what you know.
They may use a word you don’t understand. It’s okay to stop and ask them to explain it in another way.
Below are phrases that may help:
- I don’t understand. Can you say that in a different way?
- Could you explain the part about _________ again?
- Would it be okay if I repeated back what I thought I heard you say?
- I’m not quite understanding. Could you please explain what you mean again?
- I want to make sure I fully understand, and I feel I am close. How else would you explain what you said?
I believe many people are afraid to ask more questions because the provider is busy, they are embarrassed to ask what may seem like a silly question, or simply because of the power dynamics inherent in a hospital setting.
It’s okay to ask questions. It’s okay to speak up for yourself and your loved one. You may not feel comfortable with what is happening, but you should understand what is happening.
I tend to ask many questions, particularly in hospital settings.
Below are a list of questions that may help you in a hospital setting.
- What does that mean?
- Can you tell me more about that?
- What are next steps?
- What will that test help determine?
- Can you explain the lab work to me?
- Where do we go from here?
- What timeline is typical?
- What does recovery look like?
- What is expected of the patient?
- What is expected of the caregivers?
It’s difficult to get timelines in a hospital setting because there are many moving parts that rely on other parts before everything can come together.
These questions are meant to help you understand what is going on, the general timeline, and expectations of everybody involved.
Cancer.net also has a list of questions. Although these are specifically for cancer patients, many of the questions apply to any sort of hospital stay.
My biggest piece of advice is not to be hesitant in asking questions. It’s easy to let the hospital system take over, but remember they are there to treat the patient and explain what is happening.
Sometimes, you need to speak up to get better care.
Carry a Pen and Notebook with You
I know I’m tempted to use my phone to take notes, but usually, everything is happening too quickly for me to take good notes on my phone.
Having a pen and notebook with you can allow you to write down what is said.
This is important because you likely haven’t slept well and your memory won’t be as strong as usual. At least that is how it is for me.
I remember when my dad broke his hip, and we were in the Emergency Department late at night, the doctor was explaining what sort of surgery he would have. I hadn’t eaten in a long time and was extremely tired.
I was thankful I had a pen and notebook with me. I could draw how they were going to repair it, where he would go next, and any concerns the doctor had. When I woke up the next day, I could reference the notebook.
Had I relied on my memory, there is no way I would have remembered even 25% of what the physician had said.
You don’t need a large notebook. Even a small notebook you carry with you every time you go to the hospital can be helpful. As you ask questions, take notes. You never know when you may want to reference them later.
Bonus Tips: Don’t forget to write the day, time, and who you spoke with. These can be very helpful if you are receiving conflicting information.
Access the Patient Portal
Ask if you can get access to the patient portal. Many hospitals have them, and they allow you to see test results, labs, and other critical information. You’ll need to obtain permission first, so ask the hospital what is needed.
Although it can be confusing knowing what the labs say, it can help you ask more questions and stay on top of things that may be out of the ordinary.
Keep in mind providers are seeing many patients, and nobody is going to advocate for someone better than you.
It’s okay to do your own research, alert them to labs, and ask questions.
Spend Time with Your Loved One
Although I’ve spent most of this talking about how to advocate for a loved one in the hospital by communicating and navigating the hospital system, it’s as important to spend time with your loved one.
A hospital can be a disorienting place, particularly for older individuals.
If you can, bring items from home that will make them comfortable. You can bring their eyeglasses, dentures, hearing aids, toothpaste, deodorant, shampoo, and other toiletries they are used to. Hearing aids and glasses are essential for helping to prevent confusion or delirium. You can also bring everyday comforts, depending on their diet, such as coffee, other beverages, or takeout food they enjoy.
You might also consider bringing their own pillows, books, pictures of family and friends, phone, laptop (and charging cords!), eye mask, and ear plugs.
More importantly, sitting and talking with your loved one may give you time to relax and unwind from the advocate role.
What to Expect from a Hospital
It’s hard to know what to expect from a hospital. Below are a few things I’ve learned over the years:
- Doctors round in the morning: If you call first thing in the morning, you likely won’t get much of an update. Doctors normally round earlier in the morning, so I usually don’t bother to call until late morning (after 11 a.m.) or early afternoon.
- Nurses are a wealth of information: Although it’s good to stay in communication with the doctor, you can relay important information to the nurse who can bring it up to the doctor. In my experience, nurses are much easier to get in touch with than the doctor.
- Certified Nursing Assistants (CNAs) are going to make the patient feel comfortable: They help move, bathe, check vital signs, etc. of the patient. They may see and spend the most time with the patient. Ask them how your loved one is doing.
- Follow the test results closely: If you can access the patient portal, you can see test results sometimes before the physician looks at them. This can be helpful when you meet with the physician to ask about any abnormalities. Please keep in mind that if a test result is flagged, it does not necessarily mean it is a medical issue or something is abnormal. You’ll need to weigh whether watching the test results is a net positive if it will cause undue stress on family members if nobody can interpret the test results at home.
- Don’t expect good communication: In an ideal world, everybody is talking to each other and relaying information timely and accurately. We don’t live in an ideal world. Don’t be afraid to say things multiple times to different people. When you feel like blaming the providers, remember, the system is set up poorly. You may have a bad provider, but you also may have an extremely busy provider who is understaffed and trying their best to work within the system they were given.
- Don’t expect the patient to sleep well: Besides the constant noise, beeps from machines, and being in an unfamiliar place, medical providers often have to do vitals every few hours, which means being woken up more than someone probably wants.
- The goal is to get the patient out as soon as it’s safe: Being in the hospital is meant to be short term. Physicians want to stabilize a patient and get them out as soon as possible with a safe discharge plan. If you feel it’s not a safe discharge plan, you can say, “This is not a safe discharge.”
- Hospitals move slowly: As much as the goal is to get the patient out quickly, hospitals move slowly. Typically, not much happens on weekends. Unless it’s an emergency, you probably won’t meet with social workers, there will be very few consults, and it will be more of a holding pattern until Monday.
- Discharge day also moves slowly: Discharges almost always happen in the afternoon, and it’s almost never clear what the process looks like. I always recommend asking a ton of questions when a patient is being discharged.
Each hospital is different. Your experience may be entirely different than mine, but these are the expectations I go in with each time as an advocate.
Final Thoughts – My Question for You
Hospitals are a challenging part of the medical system to navigate.
You usually interact with many different people. There often isn’t a clear plan because the plan depends on too many variables.
In my experience, having an advocate is really important in a hospital setting. Having someone who can take notes, speak up for a loved one, and communicate with providers is critical.
If you want someone to advocate for you, make sure you have the legal documents set up – whether that is a HIPAA release, power of attorney for healthcare, or another document the hospital may require.
Don’t be afraid to ask many questions, carry a pen and notebook with you, and try to gain access to the patient portal. Lastly, spend time with your loved one.
I’ll leave you with one question to act on.
What will be the one piece of advice you remember for how to advocate for a family member in the hospital?