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Being a family member or loved one of an ICU patient can make you feel extremely overwhelmed and very out of place. In this episode, Kali gives you the tools so you can play a pivotal role on the ICU team.

Episode Transcription

Welcome to the ICU team. You as a family member or loved one of an ICU patient play a pivotal role on the ICU team. You are now a part of it. The next two episodes will be dedicated to discussing your role and guiding you to fulfill it effectively.

You may be extremely overwhelmed and feeling very out of place and are raising your eyebrows at me saying, “Woah, I hate hospitals. I don’t like blood. I never wanted to be involved any of this. I am SO not medical. How am I part of the ICU team?”

You may not have spent decades training to be the one to order or give the medications, place the breathing tube, or such, but that is not your job here. As someone that has spent years to decades learning and knowing your loved one. You are the expert on them. You know who they really are- before the ICU, and hopefully where they want to be after the ICU. You have the best idea of their preferences during their care down to the little things like the temperature, touches, music, and interests they like. You provide invaluable information and support. You have an interpersonal connection and intuition that we as clinicians do not have. You have an essential role to play here, so step forward with confidence. The next two episodes and really throughout this podcast, the exact responsibility you have and the tools to accomplish your mission will be explained.

So here you are, at the bedside, hopefully, of your loved in the ICU. People are either rushing around, talking to each other, starting this medication, that line, testing this, documenting that. Or, it may be completely silent with just the beeping of monitors and alarms. Where do you come in? In my mind, and in the research, you play a HUGE part in getting your loved one to survive and thrive. We will discuss in the later episodes how your involvement in preventing  and treating delirium and keeping your loved one moving can save them from brain failure, post-ICU PTSD, post-ICU dementia, and losing the ability to walk and discharge home. You are needed on the ICU team.

So, grab a pen and paper. No really, grab a pen and paper, tablet, phone, whatever you need to take notes and a more permanent record. That is part of your job. Takes notes- keep a timeline of your loved one’s status, events, and your thoughts. This will serve a few purposes.

1. It will help you make sense of what is going on. The ICU will make your head spin with information that will overwhelm you. Writing it down will help you sort through and understand it. As you write down concepts and words you don’t understand, you will know what to research when the dust has settled. This will help you process and feel a sense of control and involvement.
2. You will better be able to keep track of your questions for family meetings and understand the discussion during rounds with the rest of your ICU team.
3. It will be very helpful to your loved one to have a timeline and details of their ICU stay. We will get more into delirium in another episode, but if they are or become confused, a record of their ICU stay will be helpful. ICU diaries have shown to alleviate trauma after the ICU. We’ll get into ICU diaries later. For now, get writing.

Next- Provide the big picture. Give the team an understanding of who your loved one is. Include their past, accomplishments, career, family, hobbies, passions. Give you loved one a vision of their future and reminders of what they are fighting for. Let’s be honest, your loved one is not at their prime. This is not the person you know. Yet, this is the only glimpse the ICU team gets of them, and they themselves do not feel like connected to their true self.

You can help bring humanity into their care by providing insight into who they are and what their life is about. Feel free to share stories, little details of them- what they like, don’t like. You can even write the highlights on a paper for display. I love it when families bring pictures and momentos into the room. Now, you don’t need to bring the whole trophy display, but a collage of family pictures, memories, band performances, golf tournaments- whatever resonates with them- have visual reminders.

It’s hard to explain what this does to the bedside clinicians, but I personally have always been moved by it. It has impacted how I see my patient and gives me a deeper understanding of them and even more motivation for their future. That is going to be key as you support the team implementing certain interventions such as the ABCDEF bundle, which we will get into later.

So, take notes, share personal insights- now- express appreciation. The expression “A little gratitude goes a long way”- is an understatement when it comes to the ICU. Listen, the ICU is a hard place. Right now you are likely stressed, panicked, traumatized, and exhausted. You are on edge because part of your being and world is at risk of leaving you sooner than you want. You may feel the care being provided is subpar, or that the caregivers have not been as informative, compassionate, or warm as you need them to be. Nonetheless, despite it all, be productive in your interactions. This is not “them” vs. “you”. – You are part of the ICU team now. You are all on the same team. So, to facilitate healthy team dynamics.

Please consider the experiences and journey of your teammates. If you are in an adult ICU, you are depending on caregivers that have been through a 2 year marathon of abuse, exhaustion, and trauma. These are benevolent people that have often worked 5 twelve hours shifts or more straight while sweating under protection equipment without breaks to eat, drink, or use the bathroom in order to keep incredibly sick people alive. They have taken on extra patients, extra work, extra hours, extra stress, all while knowing that they physically are unable to provide optimal or often adequate care for the extra patients and missing staff in that moment.

In many countries, ICUs have a 1:1 nursing ratio. Meaning, each ICU nurse has 1 ICU patient. In the USA, the expectation is that 1 ICU nurse has 2 ICU patients. The reality right now, is that nurses often have 3 or 4 very critical patients at a time. It is an impossible situation. If care is subpar, it is likely not a reflection of their competency or willingness, it is the result of the crisis the ICU community is in.

This is not their fault. They are struggling to find the time to get sleep, food, and family time let alone get the counseling and healing that they desperately need. They have seen death at rates most cannot fathom. Their families have struggled and suffered because of the changes in the world and especially the demands of their jobs. They have watched dozens of their own colleagues leave, but they have chosen to stay. They chose to stay because they love you and your loved one and want to do the best for them.

By understanding that they are fallible, broken, and exhausted humans, you can take their moments of weakness with a compassionate grain of salt. You need them. They are all we have right now. Your role is to work with them. To help them. To bouy them up.

In some ways, it is like parents with a new baby that is breastfed. Only the mother has the equipment to feed the baby. Yet the father doesn’t get to check out. As he takes care of mom, he helps take care of baby. When he makes sure mom is fed, rested, and supported, he helps ensure his new baby is cared for. Only the clinicians can provide the medical care and interventions. Yet you as a family member can provide support for your teammates. A little gratitude goes a long way. Their emotional reserve is empty. As you treat them with love, appreciation, respect, and compassion, you help fill their cup so that they have something to offer your loved one.

• Thank them for working hard in their education to enter such a difficult career
• Thank them for staying during the pandemic
• Acknowledge their exhaustion and trauma. Show appreciation that they are still there giving of their time, talents, knowledge, and even soul for your loved one and you.

Help them feel again and get to know your loved one through you. You can set the tone and guide the interactions. If they are apathetic, cold, and even a little rude- don’t return the same. I’m not excusing the lack of professionalism, but stooping to that is not going to help your loved one.

Choose to recognize the burnout and find ways to buoy them up so that they can soften and rekindle their humanity. You can help them feel understood and appreciated by simply thanking them. Leaving notes for leadership or feedback cards identifying specific things that they did that you appreciated. Such tokens can really rekindle flames of passion and motivation in caregivers. Little gestures of gratitude or kind words can relieve some of the darkness of burden they’ve been carrying. We’re all human, and how patients and families treat clinicians can impact the care they receive.

Now that you have a safe and healthy environment for your teamwork, let’s discuss productive collaboration.

The ICU team wants to keep you informed and involved. Be aware of the baggage that they may be carrying from burdensome interactions they have had with families recently. They have withstood the brunt of medical mistrust, conspiracy theories, hate, and hysteria. They have born the weight of politics from mandates outside of their control, and have been expected to fix a global pandemic. They have been having really unsavory interactions with the public and even families, so they may be depleted and on the defense. Do not take this personal.

Understanding them will help you be mindful. Approach is everything. If you berate the staff, are accusatory, and don’t ry to understand their side, you create a barrier to your loved one’s care. Imagine, if clinicians feel they will be accousted, judged, and scrutinized every time they go into your loved one’s room, then they’re going to spend as little as time as possible with them. If you drain them, they have less to give to your loved one.

Consider the following communication techniques:

1. Open ended questions: When we want to say or ask something that may be difficult to approach, asking open ended questions can help foster understanding and answers without provoking defense.

• For example, If you hear in rounds in the morning that they want to do a follow-up chest xray on your loved one, but by the afternoon, you suspect it hasn’t been done, an ineffective way to ask would be:“Hey nurse, my husband didn’t get that chest xray. Seems like he’s not very important around here. This is just neglectful”.
• Rather, try something like, “Hey Josh, I heard discussion about a chest xray in rounds this morning. Do you think it’s still needed? What are they looking for, or what could it tell us?”
• That way, the reminder is provided without the attack. You are more likely to be involved in more updates and discussion as an equal team member. This sets the tone for future communications as well.

2. Another technique “Correct without accusations”. As family members, we are naturally going to notice every little thing about our loved one’s care. In our stress and concern, we can really misinterpret things and project our stress into inappropriate moments.

• For example, if you find your loved one shivering without a blanket when you come in the room, don’t respond with “Hey, I came in this morning and he didn’t have a blanket on. Didn’t you notice he was freezing? Do you sleep without a blanket?”
• Instead, try: “I hope I didn’t interrupt any monitoring, but I put his favorite blanket on him. He really hates to be cold.”
• When they don’t feel attacked, they may be able to give you more information like, “Ya know, he was sweating so much last night and kept kicking his blankets off. He fever has broken and maybe he’ll like the blanket you brought better.” – That will make you so glad you didn’t jump to frustration and accusations.

I have experienced many occasions in which families have asked questions, provided information, and advocated in a way that helped guide my understanding and decisions, improved patient care and outcomes were ultimately improved. You should have a voice. Use it effectively and you can really impact your loved one’s care. Remember, you are on the same team as the clinicians. Respect their expertise and help them respect yours.

As I have worked with families of loved ones and provided them with information about delirium and early mobility, we have seen outcomes change. We will apply these techniques to future concepts and episodes. As these families have proposed things to the ICU team with these communication skills, they have been successful.  We will hear their success stories in later episodes, but harm was spared and they were able to bring their loved ones home.

Another important element of communication is communication throughout your own family. Each family has their dynamics and problems. If at all possible, please put your familial conflict to the side and keep it out of the ICU. Select one spokesperson to be the main contact for the ICU team. This will be the only person they call and the only person that calls in for updates and questions. Various family members can be present in rounds, but there needs to be the same consistent person present for all family meetings and rounds that will then share that information with the rest of the family. It is not a good use of limited time for the other ICU team members to repeat the same information and answer the same questions from each family member. By designating one person to receive and disseminate the information, you will allow the ICU team more time to provide care for your loved one.

On behalf of the ICU community, I am deeply sorry families have been removed from the ICU during the pandemic. There is reason such as infection control and such, but without a doubt, patients and patient care has suffered. Provided in the blog are citations and studies defending your role and impact in the ICU. Involving families is part of evidence-based medicine. See the other podcast’s episode on family as part of evidence-based medicine linked in the blog. There has been discussion, studies, and movement away from visitation hours and restrictions for many years. In the “Awake and Walking ICU”, there were NO visitation restrictions before COVID hit. We are working our way back to that proper practice. Standard of care includes families. Take your seat at the table and advocate. Stay tuned for more tools for advocacy next episode.

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