ICU Family Involvement, Support, & Communication

There are many questions that family members can ask the intensive care unit (ICU) team. These questions will help the family stay informed about their loved one’s condition and provide insight that may support essential decisions surrounding their care. Additionally, knowing who to direct your questions can ensure you receive a timely answer. The following questions can be very helpful when interacting with the physician, or intensivist, responsible for a loved one’s care. 

• What is the current condition of my loved one? What is wrong?
• How is their pain being managed? 
• Are any operations or procedures needed? What are the potential complications? 
• What treatments are being administered? Why? 
• What are the goals of my loved one’s treatment plan? 
• How long is the expected duration of the ICU stay? 
• Is my loved one expected to recover? If they cannot recover, what should be done? 
• What should we do if we don’t have power of attorney or a living will? 

Family members can take an active role in their loved one’s care by asking for information about their condition, treatment plan, prognosis, and other details. Maintaining effective communication with the ICU team ensures that family members are able to make an informed decision regarding interventions and treatments if needed. General questions about visiting a loved one, adhering to ICU policies or hospital etiquette, or information about certain types of procedures can be directed to nurses. These questions may include:

• Are there any guidelines or restrictions for visiting the ICU? 
• When are visiting hours? Is anyone allowed to stay overnight? 
• What do the other members of the ICU team do? How do they help my loved one?
• How do we arrange for religious clergy to visit?
• Will you call at night if anything changes regarding my loved one’s condition? 
• Is it okay if we stay in the room when a procedure is conducted? 
• What resources or support services are available? 

While it is not always possible due to circumstances, preparing questions ahead of time can empower families of patients in the ICU to be effective advocates for their loved ones and provide valuable input to the ICU team. 

Sources 

“ICU Patient Questions to Ask”. ICU Answers. https://www.icuanswers.com/icu-patient-questions.html 

“Intensive Care Units”. The Austrailian and New Zealand Intensive Care Foundation. https://intensivecarefoundation.org.au/patients-families/intensive-care-units 

A variety of support services for families of ICU patients are available including hospital-based services, ICU support groups, and community organizations. Since families typically experience high levels of stress and difficult emotions when a loved one is admitted into the ICU, having access to resources can help them cope as they navigate the uncertainty of the situation. Hospitals often have patient advocates, social workers, or family support specialists on their ICU team to provide additional guidance, emotional support, and general education regarding important decisions that may need to be made. 

ICU support groups can be a helpful resource for patients and their families. These groups provide a space for family members to express their concerns and fears or talk about their experience with other individuals who have a loved one in the ICU. Sometimes group members might share advice or support, but other times, they might simply listen to each other and share their empathy. This helps families of ICU patients to feel less isolated or alone since these shared interactions provide validation of their emotions and concerns. 

In most cases, organizations in the local community also have resources available. Some may provide counseling, educational material, financial support, or transportation to help reduce some of the burden that families may experience while a loved one is in the ICU. Nonprofit organizations and charities are often a great source for additional support and guidance. If you are uncertain about organizations available in your community, a hospital social worker can usually locate and provide additional information about potential options.

Sources

“ICU Patient and Family Resources”. Atlantic Health System. https://ahs.atlantichealth.org/conditions-treatments/intensive-care/icu-resources.html 

“Support Groups”. Mayo Clinic. https://connect.mayoclinic.org/groups/ 

Many intensive care units (ICUs) have implemented policies that allow and support family participation in the care of loved ones, although the guidelines may vary. The involvement of family members is an important component of patient-centered care, and many ICUs recognize the benefits that participation can offer to both patients and their families. Studies have found that families appreciate being able to participate in the care of their loved ones, and likewise, their participation contributes to the patient’s healing and a reduction in readmission rates. 

Family participation in ICU care can help patients feel less stressed and increase feelings of safety due to having someone familiar take care of them and advocate for their preferences. Participation in the patient’s care in the ICU may also reduce family members’ feelings of helplessness and build confidence in their ability to manage essential care activities when their loved one is discharged to the home.

Carfe activities that family members may be allowed to participate in include:

• Bed bathing 
• Hair care
• Toileting 
• Applying body lotion
• Cleaning nose 
• Mouth care
• Tracheal suctioning 
• Mobilization 
• Assisting with feeding 
• Repositioning 
• Massage 
• Aspirating secretions from mouth 

Family participation in essential care can also help foster a greater sense of partnership between the family and the ICU team. It ensures that the patient can receive the most appropriate care possible while also supporting the psychological and emotional needs of the visiting family. Finally, it can provide a greater sense of comfort to the patient since they know that they are actively being monitored and cared for by a trusted loved one who is aware of their needs, preferences, and values. 

Sources

“Engaging Family Members in Care of Hospitalized Loved Ones Enhances Healing, Reduces Readmission Rates, New Study Finds”. Intermountain Health. https://news.intermountainhealth.org/engaging-family-members-in-care-of-hospitalized-loved-ones-enhances-healing-reduces-readmission-rates-new-study-finds/ 

“Family participation in essential care activities: Needs, perceptions, preferences, and capacities of intensive care unit patients, relatives, and healthcare providers—An integrative review”. Science Direct. https://www.sciencedirect.com/science/article/pii/S1036731422000297 

When a patient’s condition deteriorates and ICU admission is considered, the healthcare provider facilitates a transparent conversation with the patient and their family to set expectations and ensure that the patient’s values, preferences, and treatment goals are taken into account. This discussion includes a review of the patient’s condition and reasons for potential admission, an explanation of the prognosis, and an exploration of available treatment options. 

An explanation of potential risks and benefits associated with treatment is provided along with details regarding the required level of care and monitoring necessary based on the patient’s condition. Throughout this discussion, the patient and their family are encouraged to ask questions or share their concerns. The patient is ultimately responsible for deciding whether they want to continue with the ICU admission or if they would prefer alternative treatment options. However, if the patient is incapacitated due to their condition, the designated healthcare proxy or next of kin is responsible for making the admission decision on their behalf. Any decisions made should be in alignment with the patient’s wishes and preferences, if previously indicated. 

Healthcare providers aim to create a patient-centered and collaborative experience that emphasizes the values and wishes of the patient and their family. Achieving a partnership with patients and their families helps to ensure that decisions respect patient autonomy and remain in the best interest of the patient at all times. Ultimately, engaging patients and their families in ICU admission decisions is one way to establish a therapeutic relationship and uphold patient-centered care, increasing the likelihood of a better outcome for everyone involved. 

Sources

“When a Loved One Is in the Intensive Care Unit”. VeryWell Health. https://www.verywellhealth.com/what-to-expect-when-your-loved-one-is-in-the-icu-4147672 

“4 Questions To Ask if Your Loved One Is in the ICU”. Cleveland Clinic. https://health.clevelandclinic.org/4-questions-to-ask-if-your-loved-one-is-in-the-icu 

Visiting loved ones in the ICU can be a difficult and emotional experience, but it’s valuable for patients to have support from family and friends. Just be mindful of the loved one’s energy and tiredness levels and adjust your visits accordingly. Before scheduling a visit, it is important to know the particular ICU’s rules, as they are in place to ensure that the patient’s stay is safe and comfortable.

In general, only two visitors are allowed per ICU visit, though the number of visitors per day varies depending on the hospital. Sometimes the visitors will be limited to immediate family members and significant others, and often children under 12 or even 16 years of age are not allowed, though exceptions may be made for family. There are often more limited visiting hours than other units, sometimes with limits on how long each visit can be. 

Preparing to visit the ICU

Visitors to the ICU should not be sick or have any symptoms associated with an illness or infection, such as a cold, the flu, or gastrointestinal issues. Many ICUs require visitors to wear masks at all times while in the unit, some require gowns and gloves, and all follow strict hand hygiene protocols. To ensure that ICU patients receive the best care possible, visitors should not stay too long and allow room for medical staff to do their work. To this end, large gifts like balloons or flowers are often barred. It’s also helpful to check with a nurse about bringing in and/or using cell phones and electronics before entering the patient’s room. The same is true when it comes to bringing or sharing food or beverages, even water. 

Bringing small gifts or cards, and, for immediate family members, their medical history and any advance directives, is often welcome.

As hours and protocols vary, ICU visitors should contact the hospital ahead of time to confirm times and any other rules. With some small adjustments, visitors can be a source of comfort and support for their loved ones while they stay in the ICU.

Sources

“Intensive Care Unit (ICU) Guidelines”. UMass Memorial Health. https://myhealth.umassmemorial.org/RelatedItems/3,83280 

“Visiting Guidelines”. Allina Health. https://www.allinahealth.org/mercy-hospital/services/intensive-care-unit/visiting-guidelines 

“The Intensive Care Unit (ICU) Visitors’ Guide”. Memorial Sloan Kettering Cancer Center. https://www.mskcc.org/cancer-care/patient-education/intensive-care-unit-icu-visitors-guide