3. Major Hospital Events
Changes in Care
Withdrawal of Care
Changes in Care
While we are in the hospital, the doctors and nurses may decide that we need either more or less care. If we are on a general bed and we get sicker, the doctors may need to move us to the intensive care unit or to the operating room. If we are in the intensive care unit and improve, we will be moved to a general bed.
When we move to another location in the hospital, we will usually have new nurses and may even have new doctors. New places and new faces can be upsetting.
The move to a new place can also be a dangerous time. When one doctor or nurse “hands off” your care to a new caregiver, it is possible that the new caregiver doesn’t know everything that they need to know or that they wrong things about us. Even though everyone wants to do the right thing, sometimes mistakes happen.
Also, when we move to a new place in the hospital, some hospitals require that the doctors write all new orders. It is easy for some orders to get left off, especially if the doctor that is meeting you for the first time.
Because mistakes can get made, even though they aren’t meant to, it is very important that we or our families talk to the doctors and nurses about our health and allergies to medicines. When we know what medicines we were taking at home or in the hospital, it is okay to “double check” that we are on the medicines that we think we should be taking. We cannot be too safe when it comes to your health.
When it is time for us to go home, the doctors and nurses will prepare discharge paperwork. This paperwork includes the list of medicines that the doctors want us to take when we get home, it includes follow-up appointments, and it includes instructions about wound dressings, things to look for that should make us call a doctor or come back to the hospital.
The discharge paperwork is the last thing that the doctor needs to do before we leave. But, this is the most important paperwork because it tells us what you need to do as we recover from our illness or treatment. IT IS VERY IMPORTANT THAT WE UNDERSTAND THESE PLANS, WHAT TO DO, WHAT NOT TO DO, WHO AND WHEN TO CALL FOR HELP. WE NEED TO BE VERY HONEST ABOUT WHAT WE DON’T UNDERSTAND OR DON’T AGREE WITH, OR WHAT WE DON’T THINK WE CAN DO.
When the doctor writes down the list of medicines that he or she wants us to take when we get home, it is important to know what these medicines are for and to see whether or not this is a medicine ywe were on at home or not. Making sure that the medicines we are supposed to take are the same as the ones we have at home is one of the most important parts of being in the hospital and leaving. This is a time where the most mistakes can be made. If it is possible, we should have a family member bring in our medicines from home so the doctor or the pharmacist (a person who specializes in drugs) can make sure we are taking the right medicines, not two of the same kinds of medicines or medicines that may mix badly with the new medicines.
It is also important to make certain we and our family know when and where we need to go for follow-up appointments for tests or visits with doctors and nurses. During those first two weeks after leaving a hospital we need to make sure we don’t feel alone with no useful information about what to do, when to call, or who to call for help. Usually when we have to go to an emergency room during those two weeks, someone was not clear about what to do, when to call, or who to call.
Finally, it is really important that the doctors who will take care of us after we leave the hospital know about what happened in the hospital. We need to make sure that our doctor is sent or faxed the summary of our hospital stay.
Withdrawal of Care/Limits on Care
Sometimes people in the hospital do not appear to be getting better. The doctors are doing a lot of things to try to help them, but the patient is getting sicker and needing more and more tests, or even life support. Some patients have decided ahead of time that they do not want life support. Others have decided they do not want life support if it looks like they will never get better.
If the patient is not getting better, or the patient has decided they would not want certain kinds of life support, the patient (or you as their family) can decide to stop life support, or to keep life support from being started. This is called limiting care or withdrawal of life support.
There are many different kinds of life support---a breathing machine (ventilator), blood pressure medicines, shocks to the heart , kidney machines , and feeding tubes.
Doctors can use some form of life support and not others, all forms of life support, or no forms of life support. Because each individual person has opinions about what kinds of life support he or she would want, it is important to talk about what would be okay with the patient and what would not. If the patient has not told you what he or she would want, you have to try, to the best of your ability, to figure out what the patient would want. This is very hard, because you aren’t making the decision based on what you would want, but what you think the patient would want.
These decisions are very, very difficult and stressful. It is important that you feel like you can talk to people about these decisions—either your family, or a social worker, chaplain, or the doctors and nurses.
It is also important that you not feel like you are responsible for someone dying if you decide that the patient would not want a ventilator or other forms of life support. These machines artificially keep someone alive while the doctors and nurses wait to see if the body will heal. If you stop a machine, or choose for it not to be started, you have stopped the artificial support. At that point, it is up to the patient’s body to see if the body will be able to support itself.
Despite doing everything possible, some patients die in the hospital. Sometimes this happens very early on, and other times this happens when a patient has been in the hospital for a long time. If you are in the hospital when a patient dies, the nurses and doctors will find you to talk to you. If you are not in the hospital, the doctors and nurses will try to call you if a patient is getting sicker so that you can get to the hospital. Unfortunately, sometimes there is not time to call and a patient dies quickly when you are not in the hospital. The doctors will have to call you to tell you over the phone that the patient died. This is very hard news for the doctors to tell you over the phone and even harder news for you to hear.
After a patient dies in the hospital, a lot of paperwork needs to be filled out. The hospital needs to know if you want the patient cremated or buried, what funeral home you want the remains sent to you. The hospital will also need to ask you if you would give permission for an autopsy or if you would give permission for any organs to be donated to other people.
It is very difficult to have to answer these questions while you are still grieving, especially if the death is sudden. There are many people who can help you in this difficult time, the doctors or nurses, but also chaplains and social workers.
When a patient dies in the hospital, the doctors may ask, and you can request, an autopsy. An autopsy can be done to determine the actual cause of death. Most times, the doctors can only tell what they think caused the death of a patient, but these “guesses” are not always correct.
People often think that if an autopsy is done, the family cannot have an open casket funeral. However, if an autopsy is limited to below the neck, a body can undergo an autopsy and no one who sees the body in a casket would even know that an autopsy had even happened.
Sometimes, the law of a state demands that a body have an autopsy. Each state has its own laws, but usually if a child dies unexpectedly, if a patient dies within 24 hours of admission to the hospital, or under uncertain circumstances, the doctors are required to report the death to the medical examiner of the county. The medical examiner will then decide if an autopsy has to be done. A family cannot refuse an autopsy if the medical examiner has decided that it must happen.
If a patient is on life support and the life support is going to be stopped, or when a patient dies, doctors may ask you and your family if the patient would have been willing to donate organs (such as the kidneys or even parts of bones) to another person.
Sometimes the patient will have discussed this with you or your family in conversations during his/her life. Other times, the patient will have made their wishes known on their driver’s license. Sometimes you have to decide without knowing what the patient would or would not have wanted.
You do not have to decide if the patient’s organs would be okay for another person—the organ donation service will determine what can be donated. The organ donation service will be sure not to hurt someone by giving an organ to someone that should not be given. A lot of different organs can be donated even if a patient has already died---corneas from the eyes, skin, part of the bones, etc.
Donating an organ, or multiple organs does not necessarily prevent a family from having an open casket funeral or viewing. If you have concerns about this, you can talk to the doctors, nurses, or organ donation services people.