The road to recovery for survivors of critical illness is often long and difficult. At the time of ICU discharge and even at the time of hospital discharge, survivors of critical illness experience real and profound impairments. In time, many of these symptoms will improve and they can be managed and rehabilitated.
If you are experiencing these symptoms, or see this in your loved one, you are not alone. New or worsening impairments in your ability to think, your emotions, or your physical abilities is common, and it has a name: Post-Intensive Care Syndrome (PICS). When we asked patients who stayed in our MICU for two or more days, six to nine months after their hospitalization, we learned that approximately one out of every two patients reported worsening in one or more functional abilities. As a patient, it's equally important to stay positive along the road to recovery.
Physical weakness including feeling tired, experiencing pain, and being dependent on others, was the most commonly reported challenge in the ICU, medical floor, and after discharge. It is not uncommon to be very weak. If you experience this, let others know so that they can assist you.
Just as physical weakness is common, so too are challenges with thinking, anxiety, fear, loneliness, difficulty coping with these symptoms and feelings, and difficulty sleeping. By listening to our patients, we have learned that with time, and the support of your care team, your loved ones, your community, and your faith, you can overcome this trying time in your life.
Prior to your discharge, ask your care team about services that can help make your recovery better and safer, while tending to your symptoms, needs, and goals. These may include:
- Physical therapy, acute in-patient rehabilitation or at home
- Home health services
- Skilled care facility services
- Palliative care
- Hospice care
- Addiction services
For additional suggestions to improve your transition home, please review the following video. It highlights five questions that you and your loved ones should speak with your care team about prior to discharge:
- Do I have all of the equipment that I need to take care of myself at home, and do I know how to use it?
- Do I know what medications I need at discharge and understand how they have changed since I was admitted?
- Do I have all of the follow-up appointments that I need? For example, make sure you have appointments with your primary care doctor and have asked whether you would benefit from occupational or physical therapy.
- Do I need any follow-up tests? Are there any results that are pending?
- What do I do if I am struggling at home?
In addition, if you experienced an infection during your hospitalization, you most likely had sepsis. As a sepsis survivor, you should be mindful of signs or symptoms of a new or recurrent infection. If caught early, this can be managed without needing a hospitalization.
Anxiety and depression are also common for loved ones or caregivers. Known as post-intensive care syndrome - family (PICS-F), these symptoms can last for weeks or months. The PPMC MICU staff recognizes these hardships, and designed patient care, beginning in the ICU and continuing after the hospital discharge, to minimize the impact of PICS and PICS-F. With greater support and attention to the patient's needs, we want to facilitate a meaningful and enduring recovery for patients and their families.
Your Support Network
We are focused on obtaining the best outcomes for our patients in the short- and long-term, and realize that engagement of our patients' loved ones is essential to achieve this goal.
The MICU offers:
- 24-hour visiting policy for friends and family
- Patient and family-centered rounds
- Family meetings
- Family presence during procedures and resuscitation efforts
- Quiet time to promote a healing environment
- ICU diaries
- Palliative care
- Spiritual support
- Support groups for patients and their loved ones
- Support for Survivors and Their Loved Ones After Discharge
If you or your loved ones need more support, we encourage you to reach out to us at ICURecovery@uphs.upenn.edu.
For more information related to life after critical illness, visit the Society of Critical Care Medicine's Thrive Initiative.