The overwhelming truth is that medicine has become so specialized that doctors have become incapable of viewing a patient holistically and are only able to consider the particular organ or body system they specialize in. This means that a patient's mental and emotional state, lifestyle habits, age, and need to rest are completely ignored. Patient welfare is often sacrificed for physician convenience. I know it's wrong, but it is now normal.
Throughout the course of his stay, my father has been seen by a vascular surgeon, three cardiologists, a cardiac electrophysiologist, an infectious disease doctor, a podiatrist, a general surgeon, a gastroenterologist, and a few doctors who never actually said what they did. This sounds like a stellar team who should have been providing stellar care, no? If my dad had a single issue, I'm sure one or two specialists would have been a good thing. When someone has multiple issues requiring multiple specialists, problems arise. The issues are typically due to a failure to communicate, which happens frequently. Another problem exists when each specialist begins ordering tests and procedures focusing on the organ(s) they specialize in without checking to see what other tests and procedures have been ordered. For my dad, this often resulted in two different tests being ordered by two different doctors which were each designed to basically test the same thing. It also resulted in four to five procedures being ordered for the same day, which meant Dad was out of his room for anywhere from six to 12 hours at a time. Imagine how difficult it is for a body to heal when it's not allowed to rest. Asking a deathly ill man to be jostled and poked and prodded for 12 hours at a stretch with no rest borders on criminal and is just bad medicine.
In Dad's case, there were several times the procedures didn't even start until after 9 pm. This meant that he was often out of his room during the quietest hours of the night when rest would have been the best. (Hospitals are loud. Trust me.) During one span of two days, my father was subjected to NINE different procedures. Only two of those provided information that proved to be of value or that significantly changed his care plan. We learned very quickly that the best question to ask when a diagnostic test is ordered is not WHY it is being ordered, but what value the results provide and how the results of the tests will impact the care plan. If the results won't significantly change the care plan, there's probably not much point in doing the test. You'd be amazed how many tests are ordered simply to get information and not necessarily to change the diagnosis. (For a great expose on this phenomenon, read Overdiagnosis: Bad for You; Good for Business.)
Having excess tests ordered in succession also meant my father, who was in excruciating pain, had to go 12 hours or more with no pain meds on more than one occasion. It also meant he was often left in holding rooms for long periods of time without being checked on. For future reference, you can't leave an immobile man in a holding room and not check on him for over two hours and then express shock that he had a bowel movement and wet himself while no one was around. Furthermore, you can't withhold pain meds from a man who is in excruciating pain and then be surprised that he doesn't willingly cooperate with procedures. All of these things happened to my father. None of them were acceptable.
So what's the solution? Here are my recommendations:
- Don't be afraid to pitch a bitch: I mean it. If you have issues with a loved one's care, demand it be changed. Too many patients and family members subject themselves to hospital abuses simply because they don't think they have any control. The doctors are your customers. You have absolute control over the services they provide. You wouldn't believe how many times dad's nurses THANKED US for refusing a procedure or demanding the timing of something be changed. I was amazed at how often the nurses said they agreed with us and had been sorry about and concerned by the doctor's orders. Hearing the nurses express concern was all it took for us to start being very squeaky wheels and start demanding change. And ... guess what? It worked! They listened to us and changed things. We refused several invasive procedures that were being done "just in case." None of those procedures proved to be necessary. By refusing to allow them, we saved Dad from the risk of infection they would have created and from the pain and discomfort they would have caused.
- If the duration of the stay is going to be more than a week, demand weekly case meetings: A case meeting gets everyone - doctors, family, social worker, etc. - in one room so that ALL aspects of care can be discussed. We received our first one after I started expressing outrage over how my father was being treated and a charge nurse agreed with me. She organized the care meeting. The advantage of the care meeting is that it allowed us to inform the doctors of some issues they were unaware of, allowed the doctors to discuss options, and made sure that everyone was on the same page. We still had to pitch a bitch after this (see point one above), but it did help.
- Document everything: I say this for your own benefit, not because you should be planning to sue in the midst of your loved one's illness. It is incredibly helpful to keep a record of issues and successes. Hospital stays are typically very emotional times. Documenting everything allows you to remember what questions and concerns you have so that you can share them with the appropriate people. Long after the hospital stay, the documentation will be very inspiring as you read about your loved one's steady improvement. On a side note, documenting experiences is wonderfully cathartic. (Proof of that is that I've gone way over 400 words. Sorry!)
- Request additional monitoring if needed: My dad was not admitted to intensive care, but was incapable of pressing the nurse call button or doing anything for himself. His wife and I and other family members tried to be there as much as possible, but we were simply unable to be there 24/7. His lack of supervision when we weren't there ultimately resulted in him falling out of bed when he needed assistance but was being "ignored" during a shift change. Nurses can typically only check on a patient once per hour, if that. Most hospitals have what are called "sitters." Sitters have received marginal training and are hired to sit in a patient's room to monitor his or her needs. The sitter can assist with urination, calling the nurse as needed, feeding, etc. We were unaware such an option existed. After Dad fell out of bed, the hospital assigned a sitter to him at their expense. If your loved one is incapable of requesting assistance and/or has impaired cognition, request a Sitter.
- Get support: Hospital stays are often a constant barrage of bad news. It often seems that every positive report is immediately followed by two negative ones. It can often be very difficult to stay positive in the midst of constantly learning that test results revealed new problems or confirmed fears. You will soon find that you are emotionally, physically and spiritually exhausted. Some people are good at expressing grief and distress very openly and then moving on. Most people tend to deny their full feelings because they're afraid to face them. This is especially true when a loved one is extremely ill in a manner that could result in death or permanent impairment. Everyone deals with stress differently, but EVERYONE needs support and encouragement when they have a loved one in the hospital. Don't be a martyr. Ask friends to help, talk to a hospital chaplain, contact prayer lines, find a counselor, write blog posts ... do whatever it takes. It is important to find someone who will let you yell and scream and get angry, because you will be. (Anger is one of the stages of grief. Most hospital stays due to illness create grief at some level.) I am a "stuffer." When there's an emergency and people need a rock to lean on, I automatically shut my emotions off, become everyone else's encourager, and go into a highly analytical mode. The end result of this was that after a week, I was exhausted beyond belief and ached from head to toe. My husband encouraged me to take a day off. When I did, he greeted me that morning by saying that he was devoting his day to me because I had been devoting myself to my dad. (Yeah, I cried. I needed it.) After two weeks, I hit my wall and completely broke down after a very tiny issue developed. Don't let yourself go as long as I did. Emotions are good. Let yourself express them during your loved one's hospital stay. If you don't, you'll wind up having to work through them after the stay. That can get messy.
The good news is that it appears we're nearing the end of Dad's hospital stay. He has a major procedure tomorrow to remove the source of the infection, and it is hoped that he will continually improve after that. He still has a lot of healing to do, but things are looking far better than they were. Thanks to those who have supported me through this. Your support is precious.