5 Things You Need to Know When Your Loved One is in ICU

It is the middle of the night and the phone rings. Your family member has been in a car accident and is rushed to the hospital. He is currently in the intensive care unit (ICU). You race to the hospital and are met by the intensive care doctor. All you hear is “critical, unstable, and surgery.” Later, as you sit out in the waiting room, you wonder, What can I do to help my loved one through this?

This article contains key information on assisting family members survive when a loved one is in the intensive care unit. Communication, decision making, multi-disciplinary meetings, pain/comfort, and sleep are discussed. Hopefully, knowing this information will help you and your loved one have a positive experience and survive your time in the ICU.

1. Communication

Thorough communication is the best tool that you have when your loved one is in the ICU. You are going to be overwhelmed with information from many different people. Here are some tips to help you understand everything that you are being told.

• Write everything down. During this stressful time, it is difficult for you to process all of the information you are given. If you write everything down, you can read it at a later time and absorb what you are reading.
• Have someone with you. If you have a second set of ears to listen to what you are being told, then you can discuss it afterwards to be sure that you heard everything that was said.
• Nurses are excellent resources and can assist you in many ways. If at all possible, make sure that the nurse is present when having discussions with the doctor. The nurse can help to explain medical terminology or translate what was discussed so that you can understand it better.
• Keep an open line of communication with your nurse. Nurses are patient advocates and can help make sure that the patient’s wishes are carried out. Communicate openly and honestly with your loved one’s nurse; let him or her know your questions and thoughts. Nurses can better assist you if they know what you are struggling with.
• The Internet is not always the best resource. While looking up information on the Internet may be helpful for you to better understand certain things; the internet can be overwhelming because it has so much extra information on it. This extra information can leave you confused and stressed; often the worst case scenarios are included in your search results. Listen to what the doctors are telling you about your loved one. They are looking at the entire picture, not just the specific disease or injury.

The bottom line is that open communication with all members of the healthcare team will help you to better understand what is going on with your loved one.

2. Know your loved one’s wishes

Knowing your loved one’s wishes about quality of life and resuscitation is important all the time, but this information is vital when they are in the intensive care unit. When a patient is unstable and there is no knowledge about their wishes, all heroic measures are done. Heroic measures include putting a breathing tube in the mouth, performing chest compressions and giving the patient an electrical shock when necessary This is true even if there is no hope of survival. If you know their wishes, let the healthcare team know early on. It may save sorrow and heartbreak later on.

Some patients linger in ICU. They become weak and lack the ability to breathe without the ventilator. Some also lack the ability to swallow. The healthcare team may ask for permission to place a tracheostomy and/or a feeding tube. At this time, you should ask the team these questions:

• What will be their quality of life?
• Is the tracheostomy and/or feeding tube permanent?
• What is the plan after these procedures? Is the plan to try to wean and remove the ventilator or to assist for placement in a convalescent home?
• Will my loved one be in a convalescent home until end of life?
• What is the likelihood of a full recovery?

When you hear these answers, give permission based on what your loved one’s wishes are. Unfortunately the stress of the situation will sometime overwhelm families, causing them to make decisions based on guilt or their own beliefs. Take time to really think, would he/she want to be on a ventilator or in a convalescent home the rest of his/her life? Remember, it is never too early to have a living will, durable power of attorney, or a discussion regarding your wishes regarding quality of life. A durable power of attorney designates someone that the patient has chosen to make decisions for them when they are no longer able to make decisions for themselves. Do this sooner than later! Also, once you have had these discussions with your loved one, be sure to stand up for your loved one’s requests and make them known to the health care team.

3. Multi-disciplinary family meetings

It is important to get frequent updates on how your loved one is progressing while in the intensive care unit. As discussed earlier, communication between you and the healthcare team is vital. However, families often complain about receiving mixed messages from different healthcare team members. This occurs frequently when consulting physicians are asked by the family how the patient is doing. They have the tendency of reporting on how their specialized organ or system is doing, not how the whole patient is. For example, if you ask a cardiologist how the patient who has had abdominal surgery is doing, he will probably respond to only how the heart is progressing. This is not out of malice or any intention of misleading you. It is because many times they are only looking at their specific piece of the puzzle.

Multi-disciplinary family meetings help to prevent these mixed messages. At these meetings, all the consulting doctors, the patient’s primary doctor, nurses, social workers, clergy, and other team members are in the room with the family. Instead of hearing one doctor’s views on the patient’s status, the family hears from everyone and leaves with a better understanding of how the patient currently is and the expected outcome. Come with your list of questions and write down the answers. Many times, the questions are answered, but families forget because of the stress of the situation. Do not be afraid to ask for explanations if you do not understand the “medical jargon.” At the conclusion of the family meeting, repeat back what you heard so that the team can make sure that you understand and are aware of what the next steps will be.

4. Pain/Comfort

Lying in a bed for 90 - 100% of the day can be very uncomfortable. Add in the different tubes, drains, procedures, exams, and the injuries which lead to the ICU just compounds the discomfort and pain. It is common for patients to receive scheduled or continuous pain and sedation medications while in the ICU. If your loved one appears or indicates they are uncomfortable, speak up. You know him/her better than anyone else. Be their voice.Many times when being weaned from the ventilator, these medications are decreased so the patient is more awake and able to participate in this process. This can be uncomfortable. It is very important to collaborate with the healthcare team to maintain comfort while allowing this weaning process to occur.

5. Sleep

The importance of sleep while your loved one is in the ICU cannot be stressed enough. Unless he/she is very unstable, you should make a point to sleep every night (in your own bed if at all possible). You cannot support your loved one if exhausted. Let the nurse know you are going home for the night and to call you if there are any changes. Remember, the intensive care patient to nurse ratio is normally 2 patients to every 1 nurse. Your family member will have close observation and excellent nursing care. This is the safest place in the hospital for your loved one. Don’t be a martyr.

It is completely okay for you to go home and allow your loved one to rest. Even though they are the patient, if they are awake, they may feel as if they have to entertain you while you are visiting them. They may feel the need to talk to you and to put on a happy face; when you leave, you are giving the patient permission to rest.

When your loved one has stabilized and transferred out of the ICU, many times they will need you more than when in ICU. Yes your loved one is stable, but many times they need you to oversee their care. They are getting better, but still may be weak and mentally foggy. It is important to be there when the medical team does rounds and makes the plan of care for the day. Ask questions and be the voice your loved one needs at this time.

While patient survival of the ICU is not always possible, we hope that this list of helpful hints will assist you and your family during your time in the ICU. The dedicated staff of the ICU works diligently to save patient lives and assist family members through difficult times. Stress and anxiety can prevent families from hearing all of the information they are given. Be sure to ask questions and get a good understanding of what is going on with your patient before making any life altering decisions. As the family member, you are the voice of the patient; you need to make decisions based on what the patient would do if they were able to communicate their wishes.