Tips for families in the Intensive Care Unit

I read an interesting article recently about families and visitation in the ICU. Essentially, it stated {with many valid points} how having a restriction on visitation is essential in a critical care setting, and further how the presence of family members puts a difficult and overwhelming stress on the care providers which then has the ability to impact the care provided to the patient {more time with family, less with the patient}. I could not say that I disagree with the entire article or the viewpoints that were stated as much as I just see it {the entire picture} in a different way. For me, I read it as: We have a problem, and this is the solution. The problem being that family members {especially in large numbers} tend to take up too much of our time with unnecessary questions and requests, and the solution being that we should restrict the times for when they are allowed to visit. If not, then perhaps we should hire a "liasion" person to be the middle ground between nurses and physicians and families. I see the problem, I hear it loud and clear, but I think the solution is the wrong one, at best.

Let me tell you why.

It's as simple as this: think if it were you. That's how I like to approach any situation or problem in life. What if it were me, my life, my family. What if it were my husband in that bed in critical condition {regardless of whether he is sedated and paralyzed and unaware of what is going on}. What would I do? I'm not sure exactly what I would do, but I'll tell you what I wouldn't do. And that is leave his bedside. Sure, to go to the restroom, to shower, and to take care of things that need to be taken care of. But other than that? I want to be involved in his care as much as possible. This does not mean that I would be hovering over his face kissing on him and trying to wake up him {I know better than that}, but it does mean that I would be present, at all times that I am allowed to be. I want to know when the change is happening. I want to be there when there is a new plan put into action. I want to just be aware, to know, and to be his biggest advocate.

Why?

Because family will be the biggest advocate in pushing for things to get done.

Trust me when I say this, but it is true. When someone is declining and declining rapidly, the quickest way to be heard is through a family member, and I know this through experience. A family member that demands to see a doctor. A family member that demands a test be done. A family member that is persistent that a big change has been seen and no one is noticing. Those are the family members that are actually right time and time again. A nurse may only be with a patient for a couple hours and not be aware of the significant changes that have taken place during the shift prior. The same goes for a doctor. But a family member that has been by the patient's side will know. Regardless of whether or not they have had the medical knowledge to know any differently. They know just by looking at the patient, the same way we, as nurses have been trained to notice signs of rapid decline.

That being said, there are reasons why articles such as the one I read were written. It's not the first, and certainly it will not be the last. Although 90% of the time, we have pleasant experiences with family members, many times we run into those select few that we do not. It complicates the care. It shifts the focus. And sometimes we stop ourselves and say.... what are we doing here?

We would like to think it's the lack of education, experience, and overall understanding of the critical care world. So what can we do to help? What can you do to help?

You can:

Pick a designated "main" person {unless that person has already been chosen via power of attorney papers}. And pick only one. This will be the person that asks all the questions, that takes all the notes, and that speaks to all the care members involved. This person will be making all the medical decisions, and this person will be the one that the doctors turn to for consents and the contact for any changes in condition. This is important because one of the biggest problems in the ICU is the amount of family members {even as distant as a sister-in-law or cousin} that get involved. Everyone has questions {usually all the same}, and everyone wants to know what is going on. Having just one main person makes communication easier, and takes less time away from the medical staff in answering questions that we have already answered multiple times. This is especially important for phone calls as well. The main person should be the one in contact with the other family members and friends and answering any questions or concerns that they may be having.

Keep a journal

If you have no medical background, there will be absolutely no way for you to keep up with all the changes, medical terminology, and diagnoses. Even if you are in a medical profession, sometimes it is best to write everything down. It will also be something you may appreciate having at the end of the road. It will serve as a reminder of how amazing the human body, better yet, modern medicine, truly is.

Have a family meeting

If there are a lot of questions, conflict, or just disagreement throughout the family members, it is best to set up a family meeting with the staff, and come prepared with your own list of questions. A meeting is also important even when there isn't conflict involved, so that you can steer the focus back on what actually matters: the patient.

Being present is enough

Family members often think that they must be touching the patient, kissing on them, or talking to them constantly if in the room. Initially is okay, but it is important to take a step back after initial introduction and just be present, especially if it is directly impacting patient care. There are patients who will hear a familiar voice and they become extremely agitated resulting in the possibility of harming themselves through self-extubation and needing extra drugs on board. Now imagine doing that multiple times a day....

Get your rest

In order for you to be able to take care of your family member and be present {and coherent}, it is important that you also get the rest that you need. It will be much harder to understand and wrap your head around things going on when you are running on little sleep.

Sometimes, it's okay to let go

Many family members don't want to hear this. Often times, there is guilt involved. They don't want to be the ones involved in this decision, and they just want someone else to make the decision for them. After weeks and sometimes months of no progress, and one is left with the inevitable decision of what to do next?

The best way to put it, is consider quality of life. What is the best possible outcome, and how would the loved one want to live the rest of their days? On the ventilator in a facility with bilateral amputations and multiple wounds? Or to go peacefully without every tube in their body.... There are a lot of questions surrounded this very hard decision, but the most important one should focus on the patient's quality of life.

It is not about us, what we want, and what we think is right. It's about the patient. Everything should always be about the patient.