Resources for Family

Family members are crucial to the well-being and mental health of a patient. Every family has dynamics that can both assist and hinder the progression of care, and it is important to acknowledge and communicate their part in providing help and healing through the process. Building a foundation of open, clear and honest communication between families and the care team is valuable. 

Anytime a family member or loved one is in the hospital in critical condition it is a stressful and overwhelming experience. There are many stages of processing the situation that you will go through, and it won’t be easy. However, we want to help you through this process and provide you with resources that will give comfort in knowing that you are doing your best in this difficult situation. 

Specifics that aid family members and loved ones of an ECMO patient include:

Understand the basics of ECMO – ECMO (Extracorporeal Membrane Oxygenation) and ECLS (Extracorporeal Life Support) are, quite simply, terms used by members of the medical team to reference the most advanced type of life support for a person. 

ECMO is a little box or cylinder that is used as an out-of-the-body lung when your loved one’s lungs are not able to get the right amount of oxygen or clear their carbon dioxide in the body. This little box is so helpful in providing the oxygen needed for your loved one to survive while their lungs and/or lungs recover. It is a beautiful piece of equipment that can temporarily sustain life in hopes of recovery.

ECLS is the overall term used for the entire therapy. Your loved one may be suffering from heart, lung or liver failure. They may have experienced a catastrophic burn that requires temporary support of their organs so that they can fully rest and recover. ECLS is the ultimate life-support and very last effort that the medical team can make to preserve and recover their body. 

It is basically a complex looking pump. A temporary external lung and/or heart type of device. One large tube will be placed in a vessel to remove your loved one’s blood, diverting the blood to the oxygenator and pump. This revitalized blood is pumped back into their body, either away from or to the heart, to provide the oxygen rich environment needed to heal. There will probably be large machines in the room that look complex and even scary. Rest assured that the medical team is competent in operating each and every piece of machinery. 

Be present  - Being present with your loved one is one of the most helpful and healing ways you can be supportive in this situation. This means sitting next to them (when possible) and simply holding their hand. Reading a book that they like aloud, even when they are “sedated” or not responding to you. There have been accounts where people hear and respond to external auditory stimuli after the fact, so talk to him/her, sing to him/her. Provide music that your loved one may like to create a peaceful and comfortable environment while they recover. If your loved one is awake or has periods of awakening, give the medical team pictures and cards to hang in their line of sight to provide encouragement. Being present can consist of many things, but the most important is to be there with your loved one. Put them first while you are next to them and collaborate with the medical team to determine how you can best help in the situation. 

Be realistic and also hopeful through the process – If your loved one is being supported with ECMO, the reality is they are very, very sick. The healthcare team is doing everything they possibly can to mend their body and bring them to a place where they can functionally recover. Understanding this reality is important. ECMO is not a quick fix. The healing and rebuilding process will take time. It can be complex. It can help restore but also, there is a chance that it will not work. Remaining steadfast and hopeful through the ups and downs will be hard, but remember this is a marathon to the possible recovery process. Give things time, be present and believe for the absolute best. 

Ask questions and seek to understand graciously – Asking questions and researching on your own will help you understand better. Sometimes, it is hard to know what to ask. We have created a guide for you to steer discussions among your family members as well as with the medical team that will help create an environment of healthy conversation for the benefit of your loved one. 

Self Care – Being present with your loved one is usually top priority, welcomed and completely commendable. Remember to take care of yourself as well. Sleep, eat, stay hydrated, take a shower, take walks outside of the ICU environment, do what helps you relax and re-center mentally. Jack Kornfield said, “If your compassion does not include yourself, it is incomplete”. If a member of the medical team encourages you to get some rest, eat or take a walk to regroup, take their suggestion to heart. They are looking out for your best interest as well.