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Participating in the Care of a Loved One While a Patient in the ICU

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Interacting with the intensive care team

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The intensive care unit is a busy, noisy environment. There are many alarms, monitors, and devices. Watching everything that happens here may raise many questions. This guide is meant to help guide your questions to the members of the ICU team. The doctors, nurses, therapists, and other staff are here to answer your questions. There are no wrong questions. Stress makes it difficult to understand and remember unfamiliar information. It is okay to ask questions more than once. If you are unsure of what to ask, here are some questions that may address the most common areas of concern.

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What should I say to my loved one?

 

You should speak normally. However, keep in mind that the patient might not be able to respond to you, either because there is a breathing tube in place that does not allow the patient to speak, or because of medications or altered awareness. You should still speak with the patient even if he or she is in a disoriented state or coma. If the patient is alert, and has a breathing tube in place, phrase questions that can be answered with yes or no nods. If he or she is able, help write brief answers on a pad of paper. Occasionally, over-stimulation may temporarily affect vital signs unfavorably. The nursing staff will instruct you on how you can be supportive in other ways.

 

Is it okay to touch my loved one?

 

Yes. Touching is usually comforting. The nursing staff will let you know if this is interfering with rest or care.

 

How long should I visit?

 

Familiarize yourself with the visiting hours policy of the intensive care unit. In general, you need to visit as long as it is helpful. The nursing staff can often help you with this decision. Both you and your loved one need rest, quiet time, and nutrition. Poor nutrition and lack of sleep will make you weak, able to think less clearly, and feel the effects of stress more strongly.

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In the case of young children in the ICU, having a familiar person present or near at all times may be helpful. However, one person cannot usually do this. Therefore, having other family members or close friends who can take turns being with your child is ideal.

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Should I bring anything from home?

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Familiar things are often comforting; however, you should check with the nurse before bringing anything into the ICU. Photographs, cards, pajamas, robes, and slippers may be helpful. Children may have a favorite stuffed animal or blanket. Many ICUs may have the capability to play favorite music or videos. Friends and family members who are unable to visit may send an audio recording of well wishes.

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What should I ask the nurse?

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The nurse has the benefit of being at the bedside for an extended period of time. Therefore, he or she may be the best person to comment on the patient's comfort and response to certain therapies. Here are some questions that should generally be asked of the nurse:

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  • Who are the doctors who are caring for my loved one?

  • Which doctor is in charge?

  • Is there an intensivist (a doctor with special expertise in critical illness) involved in the care of my loved one?

  • Is there anything in the treatment plan for the day that may be painful or uncomfortable?

  • If so, have medications been ordered to prevent this?

  • If you are not in the room, how do I call for help?

  • How quickly should I expect someone to respond to the call?

  • How does my loved one go to the bathroom?

  • Can you explain to me what the doctor said?

  • Will you explain what all the lines, tubes, and equipment are and what they do?

  • What can I do to help?

  • What can I do to help my family and myself?

  • Who can visit and when?

  • If I am not in the hospital and something happens, how will you get in touch with me?

  • What happens if something urgently happens and I am not available?

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What should I ask the doctor?

 

When you do speak with the doctor, it is often difficult to remember all your questions. Therefore, writing down questions and concerns as they arise can be helpful. Here are some commonly asked questions:

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  • What is wrong with my loved one?

  • Can it be cured?

  • How will this condition affect his or her quality of life?

  • What is the treatment plan?

  • When do you usually see a response?

  • What changes will you be watching for as a response to the therapy?

  • What are the risks of the therapy and/or medications?

  • Is the patient in any pain?

  • What is being done to ease pain and fear?

  • How is nutrition provided?

  • Is the patient receiving the medications he or she was on at home?

 

How often should I get information?

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In general, daily discussions with critical care team members allow for an update on the condition of your loved one and the treatment plan. If an acute change or event occurs, you may need to speak with the doctor more frequently. The bedside nurse is very helpful in keeping you updated about events of the day as well as clarifying information. If there are multiple physicians, selecting one of them to speak to the family daily can often be less confusing. In addition, it is often best to have 1 or 2 family members serve as the spokesperson(s). In case of difficult decision-making and/or confusing information, the nurse or social worker can often arrange a "team meeting" or a private meeting with the doctor.

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What is the best way to share information with family and friends?

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Many family members and friends will be anxious to hear how your loved one is doing. They will want to know what is wrong, how the patient is responding, and what they can do to help. Their concerns can be of comfort, but sometimes seem overwhelming as you try to make contact with everyone. First of all, if there are needs at home or work that others can help you with, let them. This is helpful to you as well as to the person helping. In regard to relaying medical information, you must first decide whom you want to relay this information to and what information you want to share. Once you have decided this, it is often helpful to pick 1 or 2 family members or friends to be in charge of getting this information to others. The person or persons that you choose must be able to understand the medical condition correctly so as to prevent miscommunication. These persons can also "filter" out all the free advice that friends and family members might offer. To protect patient privacy, information may be restricted to the family spokesperson.

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What is meant by "doing everything"?

 

"Doing everything" implies that any and all appropriate therapies will be utilized in order to preserve life. This can include the use of life support machines, dialysis, invasive monitors, and CPR in the event of cardiac arrest.

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Physicians are not required to offer therapies that would be medically ineffective (will not increase the patient's chances of survival), and you may be told that your loved one is not a candidate for certain interventions.

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Intensivists (trained intensive care doctors) can help by addressing your loved one's care with you.

If the medical condition is not curable or recovery is unlikely, what are the options for comfort care?

The medical team can discuss all the options with you and your family. Your options may include removal of certain therapies like mechanical ventilation, medications to support heart function, dialysis, etc. Certain tests and procedures that are not likely to be helpful can also be discontinued. Some questions to clarify this can include:

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  • What does "DNR" mean?

  • Will CPR save the patient's life if his or her heart stops?

  • How will the patient be kept comfortable?

  • Could the patient go home or have hospice care?

  • In cases that involve children-Can I hold the patient?

  • Can our clergy come?

  • Can you wait to remove certain life-supporting equipment or therapies until after all family members and friends have had a chance to say good-bye?

 

What if I want everything done, but the medical staff feels stopping or not adding certain therapies is more appropriate?

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This situation usually arises if there has been a poor understanding of the current medical condition and/or the benefits of certain therapies. If this conflict does arise, then a meeting of appropriate family members and medical staff should occur. At this meeting, a treatment plan can usually be agreed upon. In the rare occasion that a treatment plan cannot be agreed upon, most hospitals have an ethics committee that can be contacted to get involved in the decision-making.

 

Resources

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Publication Date: 2002
Page Last Reviewed: July 28, 2011
Reviewed By: Jonathan D. Feldman, MD

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