How To Advocate For Yourself In Healthcare
Being in the hospital can be traumatizing for everyone involved: the patient, the family, friends, etc. Being able to advocate for proper care and make sure things are being taken care of properly can be tough and scary! When you are not well-versed on medical terminology and how things operate, it can all seem super frustrating and confusing. Bad past experiences can leave you with a bad taste in your mouth, making it hard to trust your caregivers. Skepticism can make you uneasy and lack of knowledge and familiarity can make you uncomfortable or afraid to speak up. I have some tips for a family member, or patient, that would help when in a hospital or clinical setting. This isn’t everything you can do, but some key points I think could help with longterm hospital stays or even a clinic visit with a healthcare provider. Just pick what may be appropriate.
1.Keep A Journal
It might seem weird at first to be writing things down, and even excessive, but it’s up to you on what and how you document. Some important things to jot down: Medications (especially new medications) along with their side effects and WHY they are being given. Doctor’s/mid-levels (NP, PA) names and what specialty they are with (i.e. cardiologist, neurologist, internal medicine, etc). You may want to document procedures done and times they are done (even something as simple as a foley catheter insertion or a dressing change). You can document when care was last given (oral hygiene for patient’s who are unable to do it alone or with YOUR help, emptying of urinary catheters/any drains). Why are you doing this? Not to be a nuisance, but to keep a running document that allows you to see any consistencies or inconsistencies, and even be able to review things that you may have questions about upon discharge or with the physician the next time you see them. It will help formulate necessary questions, notice trends with a family member that nursing staff may not catch since you may not have the same nurse each day, etc. In a lot of cases, it’s just an organized way to keep track of what’s going on - especially if the hospital stay is a long one. It can be helpful to let the nurse or physician know when something was done (let’s face it, we see plenty patients and it can be hard to remember an exact procedure date or get all of the details in report). You now are a part of the team.
2. You Have A Right To Refuse
If you feel uncomfortable about a medication or do not understand WHY you’re taking something - ask. It’s my job to explain side effects and what a medication is for, or I can find someone who can explain it more in-depth. If you have questions about a medication, you can also ask your attending physician or whichever doctor prescribed it in-hospital about it. They will tell you. Do not feel obligated to take something you are unsure about. Also, if you do not feel comfortable about a procedure, do not feel forced to comply. You are allowed clear information before signing on to do-so. Do understand, some things do impede on treatment, but it is always your prerogative. Express concerns and get information to make sound decisions.
3. Ask Why
As explained above, it’s okay to want to know WHY something is happening. It might seem like you’re being a pain, but trust me - we will get over it fast. I understand the stress you’re under, and it’s way greater than mine! If you have questions I can answer, I will. So, please - ask what blood is being drawn for, how often. You can ask why we may be inserting a foley catheter. You can even ask why certain alarms are alarming, what an infusion is for, and why it’s needed. It’s OKAY to be INFORMED about the care being received. We should be explaining why we are doing things, anyways (whether a patient is comatose or awake and alert).
4. Listen To Yourself
You know yourself the best. We depend on you to also tell us what’s wrong or if any changes have occurred. Family members see patients every day and know what’s normal or not. Please, communicate to us these things. If you genuinely feel something is wrong and that things aren’t right, it’s okay to express the concern. Sometimes it’s an expected side-effect, other times it isn’t. Either way, it should be addressed and heard. Do not be afraid to speak up. Tell the nurse, tell the doctor. If it’s something worth taking a look at - let us know. You know yourself the best!
5. Communicate
As far as advocating goes, communication is a big key process here. Communicate changes, communicate grievances, communicate expectations and goals for a hospital stay. Most importantly, express your concerns and apprehensions about things or things you agree with when it comes to a treatment plan. Be active in your treatment plan. It’s necessary to give and get feedback from the healthcare team about what’s going on. Why I said before to listen to yourself, as well as ask WHY about things. Let your voice be heard and open the floor for better communication with your team. You are also a team member in this process.
Always remember to try to be civil about the way you communicate things. Remember, this nurse or this doctor is not the same nurse or doctor you may have had a previous issue with.
6. Keep Your Own Records
You can always request a copy of your own medical records for review and safe-keeping. It’s okay to ask for copies of consent forms or any forms you may sign while in the hospital. It’s okay to be on top of your own healthcare records. Don’t feel weird about asking about it. Someone will be able to get you what you want, sometimes we (your nurses) don’t have the authority to do so, but we can find someone who can.
7. You Can Request A New Nurse/Doctor
If you find that the nurse you have, or any member on the team treating you is legit not being helpful, not handling things with care, and is not having your best interest at heart - do not be afraid to ask for a different member of the team to help you. This is an absolute last stop, of course. It shouldn’t be abused just because you’re having a bad day or you think the personnel is being too hard on you and requiring you follow certain steps to get better and out of the hospital. This is for blatant disrespect, noticed lack of care, and being unheard/tended to as you think you should be. If you feel more harm than good is being done and lack of expertise is being practiced, you may reach out to the charge nurse about nursing staff or any other concerns. You can also go above to managers or house supervisors.
Please, be sure that you NEED this done in order to receive proper care. I’ve been berated simply because I’ve told someone they HAD to get rest to heal. I get it, it’s rough, it’s draining, but just be sure to delineate between malpractice and pettiness due to a bad day.
Remember, this is just a short list of things I think can be helpful in a hospital setting to advocate for yourself or a family member/friend in the hospital. Being hospitalized can feel like hell in hot water, but hopefully these few things help make the process a bit more “pleasurable”. First-timers can find it rough and don’t know how to navigate. It’s okay to tell the nurse or healthcare team that it’s your first time and to please explain everything to you, as needed. For frequent flyers, maybe you hadn’t thought of some of these things and it could help turn bad experiences into better ones.
Overall, I just want you to remember that as a nurse, I am your advocate and I want us to work TOGETHER as a TEAM. I am here for you and I am your biggest asset. We should be listening to one another and communicating. It’s frustrating to be away from home and in a small hospital room, but we are here to help. Help us help you! Remember that we are usually helping multiple patients at a time and it can be tough to spend a lot of time with one patient for too long, but we try to be there. Give us grace as we fight your battles and our other patients’ battles, as well. May these little pieces of advice be helpful in your journey of navigating the hospital as a patient or patient advocate.
- Begum, Over And Out ;)