How can we participate?

ICU patients and the care team need help from patients’ friends and family.

Families know patients best and what they need to get better. If the patient is very sick, healthcare providers will ask family members questions about the patient’s health and background to get to know the patient better. Family and friends are welcome in the patient’s ICU room. If family cannot be in the ICU, staff will get in touch with them by phone.

Share the patient’s story:
What facts and stories tell people who we are? Jobs, hobbies, favorite TV shows and singers, what a person is most proud of—all these paint a picture. Seeing this helps the healthcare team understand your loved one as a human being and not just as their patient. This real-life view can only come from patients and families, and is essential to make sure they get the right treatments to reach their goals. Here are some common things patients should think about sharing with the ICU team:

  • Who is important in your life
  • What you are worried about
  • What you did for a living or liked to do before being hospitalized
  • What you are hoping for
  • Questions about treatments or procedures
  • Wondering what to expect in the future with your illness
  • Being uncomfortable at any time
  • Who should make decisions if you can’t
  • Cultural or spiritual traditions

Maybe you and your loved one have talked in the past about what kind of medical care you would and wouldn’t want if one of you had an emergency. Sharing this with the healthcare team helps you and your loved one make the best choices when developing a treatment plan.

Help us all communicate better:
One of the most important things patients and their families can do in the ICU is to communicate with your healthcare team. The healthcare team is working hard to provide your loved one with the best care. To do that, we need to know what’s on your and your loved one’s mind. There may be many things you want to tell us – some may seem very small and insignificant, some may be hugely important.

If you hear incorrect information reported during rounds or between providers, please speak up. One of the reasons we ask the same questions and go through the same facts over and over is to make sure we get things right. Your help is welcome. Likewise, if you hear something that doesn’t make sense to you, asking your questions is important.

Take an active part on rounds:
Patients have a right to ask that medical information be shared with the family members of their choice. Healthcare providers, including hospitals, are required by a federal law called HIPAA to take steps to protect patient privacy. For this reason, hospital staff may seem uncomfortable discussing patient care in your presence as a visitor. Additionally, a provider or team doing rounds may need to uncover part of the patient’s body to examine it—providers do not want to expose the patient without his/her permission. Having patients give permission for a specific family member to receive information and/or be present during an exam eases staff concern.

Patients are encouraged to let their nurse know if they would like to participate in rounds and other discussions of care, as well as if they would like a friend or family member with them. Ask your nurse ahead of time for a quick orientation to the rounds process so that you will know what to expect.

When the rounding team comes to you, listen carefully and write down questions or things you didn’t understand.

Be ready to briefly share your view of how your loved one seems and what their goals are.

It may not be possible to get all questions answered right away; rounds can be a great opportunity to connect with the people you can talk to in more depth later in the day. Bring your “what did they mean by …” questions to the bedside nurse along with any outstanding concerns. If you are not able to be present for rounds, you can have the bedside nurse speak on your behalf and follow up with you by phone or in person afterward.

Provide Hands-On Care:
You and your nurse can work out what tasks you might help with. Whatever ends up on your to-do list, it always starts with clean hands to help prevent the spread of infection. We can show you how to use the alcohol hand gel or you can use the sink if you prefer to wash with soap and water.

You might help out with:

  • Questions about treatments or procedures
  • Wondering what to expect in the future with your illness
  • Being uncomfortable at any time
  • Who should make decisions if you can’t
  • Cultural or spiritual traditions