Managing your health: a guide for people living with HIV
13. Hospital stays
This chapter tells you what you need to know about the hospital environment so that you can be comfortable and confident there. It will describe what you need to do to prepare for your hospital stay, how to be the leader and decision maker in your hospital care, and how to manage the transition back to home once you are discharged. At the end of the chapter, there is information on how to prepare for health emergencies and possible alternatives to a hospital admission.
There may be times in the course of living with HIV when you need to be in a hospital. This could be a brief visit—a few hours in an emergency department, for example—or a stay that lasts days or weeks. In some situations, you may require an even longer stay in a specialized unit or facility.
Hospitals are there to help you manage health emergencies that can’t be addressed at home or by your usual healthcare providers. Hospitals also provide the specialized care and intensive treatments or assessments you may need from time to time as you manage your health.
The hospital environment
A hospital can be a confusing place, even to people who work or volunteer there, so don’t be surprised if it appears confusing to you, too. It will get more familiar the longer you are there. There are hundreds, perhaps thousands, of people who work there in many different areas. You will encounter many of these people during your stay, but many will be working behind the scenes.
Everyone working in a hospital is trained to do his or her job, and all employees report to someone who supervises their work. Staff and volunteers in hospitals wear name-tags, which usually show their picture, first name and areas where they work. They may also wear uniforms, depending on their role or the policies of the hospital. If you are not sure who someone is or what he or she does, it is fine to ask.
Hospitals are busy places that usually run 24 hours a day, seven days a week. However, some parts of hospitals, such as out-patient clinics or staff offices, may only be open during certain hours or on an as-needed basis. There are many processes in place to ensure that hospitals run smoothly. These may not make sense to you, so ask if you do not understand the reason something is happening. You are allowed and expected to ask questions, and you should expect to have your questions addressed.
A hospital may be located in one or many buildings. These may be located in one place or spread out over many sites. There are maps near every entrance to help you get around. Signs for frequently used areas are usually large and easy to see.
Arrive early if you can. It’s good to take time to find your way around, especially the first time you are there. Don’t be afraid to ask for help with directions. Hospitals have information desks near the main entrance to help with this, although there will be times when no one is at the desk. There will always be signs on the walls and sometimes lines on the floor to guide you.
Most activities in a hospital are done on a priority basis. This means that those people who are sickest get looked after first. Your procedure may be postponed to allow for someone in more critical condition.
Preparing to go to the hospital
There are ways to prepare for being in hospital and to help other people prepare for you to be away from home. Make a list of your weekly activities and determine what needs to be done while you are away. (This could include things like looking after your pets, watering your plants, picking up your mail or paying your rent.) Then decide who can do these things for you. Talk to your friends and family to figure out what you can realistically expect from them. If possible, try to do this before you actually need to. Then you’ll know that the people you are counting on can actually do the things you need.
Sometimes, one person will be able to look after everything. In other situations, it may be better to divide the duties among a number of people. Try to have a back-up plan in case your first choices do not work out. This way, when you need to put your plans in action, everything will be in place.
Make a list of the things you would want to take with you to the hospital. You may feel anxious when you are told you need to go there, so having a list prepared ahead of time will help you.
Things can sometimes get lost in hospitals, so do not take anything you would hate to lose. Leave your valuables at home or with someone you trust. Most hospitals have Web sites with a section for people who are going to be admitted to the hospital. This should tell you what you are allowed to take. Or phone the hospital and ask to speak to someone about what you may take with you.
The process of being admitted can be time consuming. If possible, bring someone with you for company and support. Bring a snack in case you get hungry if you have to wait, and a book in case you get bored.
If your admission is planned, you’ll likely have a pre-admission appointment prior to the day you are admitted to gather essential information, like which drugs you are on. This appointment may also involve blood work or other diagnostic tests. You will be given information about where to go on the day you are admitted and any special instructions you may need. (For example, you may be told not to eat after midnight.) This is a good time to ask questions about anything you are unsure of and to provide information on any cultural, religious or spiritual requirements you may have. Also mention any physical limitations or disabilities, even if these seem obvious to you. The hospital staff will try to meet your needs and will let you know if there is anything they cannot do. If something important cannot be accommodated, ask to talk to someone who can offer alternatives.
Bring a paper and pen and write down the answers to your questions, including the name of the person you are talking to. There is a lot of information to take in, and even people experienced with this process can forget some of the details. If you were admitted through the emergency department, all the necessary tests and instructions will take place as they are needed.
Once in hospital, you will be assigned a private room (with one bed), a semi-private room (with two beds) or a ward (three or more beds). This depends on availability, insurance coverage, or your clinical needs.
Hospitals have many different types of care providers (referred to as multidisciplinary or interdisciplinary care teams) that work together to look after you. Many of these care providers are described in Chapter 3, Your healthcare team. The care providers' responsibilities can vary from hospital to hospital, so it is important to ask “what do you do?” or “what can you help me with?” when you are introduced to someone involved in your care. Again, it is fine to write this all down so you won’t forget. At some hospitals, usually referred to as teaching hospitals, medical students will be involved in your care as part of their training. However, you have the right to decide whether you want students to be involved in your care. Let one of your care providers know if you don’t want students to be involved.
Communication is the key
As mentioned above, you are not only allowed but expected to ask questions about what is happening to you, and you can expect to have your questions answered. Confidentiality and privacy policies will prevent your private health information from being shared with anyone who is not important to your care.
You need to have clear and frequent communication with those who are caring for you. Let them know about your concerns. You have to identify what your priorities are, because that is what your care providers are going to be doing on your behalf. You want to make sure that your priorities and theirs match. If not, insist that they spend time talking with you so that you can get some agreement on what is going to be happening to you and why.
It is also important that you communicate with family and friends. Let them know clearly and directly what you need from them. Sometimes, people are so concerned for you that they lose track of what you really need. They may be unaware of how exhausting visits can be, or how the hospital schedules and routines work. Tell them instructions like “I’m sleepy… 10-minute visits only, please” or “I’m getting my beauty rest.” Or, write these down and stick them on the wall over your bed or on your door. Most visitors will be happy for the directions.
If anything happens that you are not happy with, tell someone. Try to speak to the person closest to the problem first, but if you can’t do that, tell someone else. Every unit in a hospital has a unit manager, head nurse, charge nurse or supervisor that you can talk to. Hospitals also have an ombudsperson. This is a patient advocate with whom you can speak if you have a problem. If there is no ombudsman, the social worker on your unit will be able to help you identify who you should talk to. It is helpful to be specific, provide details and talk about what you would rather have had happen. If something is wrong, being silent will not help you resolve the problem, nor will it help the hospital to improve. Speak up if you can. If you feel you can’t, a friend may be able to speak on your behalf.
At some point during your hospital stay, you’ll be told that it is time for you to go home. Usually this is planned a few days in advance. Plan for your discharge in the same way that you planned for your admission. Make a list of all the things that are being done for you in the hospital. Then identify which things need to continue when you are home and who will be doing these things. It may be you, a visiting nurse, social worker, rehabilitation therapist or someone else involved in your care. If you don’t know who will be doing it, ask. Hospital staff called discharge planners can help you prepare for going home. (Sometimes social workers do this, too.)
Back when you were preparing to be admitted, you made out a list of jobs and duties that needed looking after at home. Now, when you're preparing to go back home, is a good time to look over that list again. Look at all the things you will need to do at home and think about how you will be able to get these things done. Before you are discharged, hospital staff can arrange for some kinds of home care services. These may include certain types of home clinical care, such as changing dressings, rehabilitation exercises or accessing funding for some drugs. However, these services only provide basic assistance related to your physical care. Your friends or family members may need to help you for a while, doing laundry, cooking or grocery shopping. Be sure to check in with the people who are helping you and see how long they will be able to help. Open, direct discussions about what you need and what others can provide is essential.
Instead of going to a hospital
If you are told that you need to go into hospital, you may want to ask if there is any other way to accomplish what that hospital would do. If it is an emergency, this may not be possible. But, in some other cases, a continuing care facility may be a better choice than an acute care hospital. A continuing care facility is like a hospital, but for people who require longer stays with some rehabilitation therapy.
Some hospices provide supportive care if you need more help that can be given at home. Hospices are places where people who are very sick can receive 24-hour care. Nurses, with the help of volunteers, do the caregiving. Space is usually limited in hospices and there are often waiting lists. Residential hospices tend to be located in towns and cities and so may not be available in rural areas.
It is important to ask your care providers if there are other choices. The decision is always yours.