Families and loved ones play incredibly important roles helping ECMO patients recover.
Whether the need for ECMO was an anticipated or an unexpected event, it can be overwhelming and confronting.
During such a challenging time, it is important not to ignore your own care and to continue to look after yourself. Know that patients receiving ECMO support are extremely well cared for and are receiving the care they need at that time. Usually this role gets larger as time goes by. Emotions can often be overwhelming especially in the early phase of ECMO support but illness often takes much longer to recover. Good self-care gives you the best chance of being part of the recovery later on and handling all eventualities that may arise. Strategies that help with self-care include maintaining relationships away from hospital, developing routines, eating well and exercising and asking for help from others.
An ICU Specialist (sometimes called an Intensivist) is a specialised doctor with lots of experience that is responsible for the overall care of a patient in ICU. There is always an ICU Specialist in charge of an ICU patient. This is the best person to speak to if you have concerns about the care of a patient on ECMO and at the start of ECMO. They are available for meetings but you should expect to be flexible and reasonable regarding meetings as they have many competing demands on their time.
Other bedside staff like nurses and supporting doctors, have greater availability to meet with you and are excellent sources of information. If you are concerned or confused by information which seems contradictory or confusing, it is generally unhelpful to keep pressing for information with that staff member – arrange a meeting with the ICU Specialist as soon as possible. Other medical specialist from outside ICU will also be available on a needs basis to provide information and support.
Most patients spend some time sedated while on ECMO. Sedation is not the same as sleep. It is actually not good for anybody to be sedated longer than absolutely required and most ECMO patients are assessed every day to see if they can safely emerge from sedated states. Most, but definitely not all, can be safely managed on ECMO awake and alert.
ECMO doesn’t cause pain, unless there are complications, but immobility can be painful. The bedside nurse is primarily responsible for patient safety and will constantly work with patients to achieve the safest, most alert and comfortable state possible, as soon as possible. Generally, it is better for patient care if patients are alert and able to partake in care and receive information. Pain can occasionally be a feature of severe illness and ECMO. Staff constantly assess for pain and deliver strategies for helping reduce it.
