Q. My husband, Phil, and I have been married for thirty years. We were faced with a heart-wrenching situation recently, when Phil’s father had a heart attack and was on life support in the hospital. He didn’t have an Advance Medical Directive in place, and Phil’s mother was faced with a difficult decision about what to do, and Phil did not agree with his mother’s decision, which involved keeping Phil’s dad alive using a new life saving measure called ECMO.
The painful situation prompted us to start discussing our own wishes and thinking about getting our estate planning and incapacity planning documents in place, so we can decide what happens if we are ever in a similar situation. If Phil or I have a terminal condition, neither of us would want to be kept alive using any extraordinary measures, especially something like ECMO.
According to the doctors (who Phil’s mom went along with), ECMO is a “miracle machine” that helped prolong Phil’s father’s life. But based on what we observed, ECMO seems like a stupendous waste of time, money, and medical resources. Can you tell us more about ECMO, and if it’s something you can include in our advance medical directives to ensure that we will never be subject to this so-called miracle machine?
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A. I am sorry to hear about the difficult situation with Phil’s father. You are wise to take the initiative to discuss your end-of-life wishes and to get your documents in place so you can make your wishes known.
As you are likely aware, an advance medical directive is a document that allows you to spell out your wishes to health care providers and loved ones about treatment choices in the event you cannot speak for yourself. An advance directive gives you a chance to think about what kind of medical treatment you would want if, for instance, you had a severe stroke or other serious medical condition or bad car accident that made you dependent on others for most of your daily care. With an advance directive, you can state your preferences for treatment or non-treatment ahead of time.
You mentioned that your preference and that of your husband would be to not have life-sustaining treatment if you have a terminal condition, and definitely not ECMO. Let’s talk about Life-Sustaining treatment in general and ECMO specifically.
What is Life-Sustaining Treatment?
Life-sustaining treatment is any medical intervention, technology, procedure, or medication that forestalls the moment of death, whether or not the treatment affects the underlying life-threatening diseases or biological processes. Examples include mechanical ventilation, dialysis, cardiopulmonary resuscitation (CPR), antibiotics, transfusions, nutrition and hydration, and, most recently, ECMO, which stands for ExtraCorporeal Membrane Oxygenation. Most people want to accept life-sustaining treatments if they will help to restore normal functions and improve your condition. However, if you are faced with a serious terminal condition, you, like most people, do not want to prolong your life with life-sustaining treatment. End-of-life medical decisions are something you should discuss with family members, including the person you choose to be your appointed healthcare agent.
When it comes for life-sustaining treatment, you mentioned ECMO as an option. ECMO is if you only knew medical procedure which we will discuss below, and we have recently added it to our list of artificial life-support measures in our advance medical directives, so you absolutely may reject ECMO as an option for yourself and your husband, but first, let me explain to all of our readers what ECMO is.
The Good, Bad, and Ugly Sides of ECMO
ECMO (extracorporeal membrane oxygenation) is currently the most aggressive form of life support available. It pumps blood out of the body, oxygenates it and returns it to the body, keeping a person alive for days, weeks, or months, even when their heart or lungs don’t work. According to Dr. Kenneth Prager, director of clinical ethics at Columbia University Irving Medical Center, with ECMO, “(y)ou have a heart that’s not working, yet the patient is not dead.”
Every person must decide for himself or herself if ECMO is good, bad, or ugly. Here are some considerations when trying to make that determination:
• ECMO has saved people on the brink of death, including adults whose lungs have been ravaged by the flu; a trucker who was trapped underwater in a crash; and a man whose heart had stopped working for seven hours!
• ECMO use has grown dramatically among adults. In the United States, procedures tripled from 2008 to 2014, up to an estimated 6,890, according to the federal Agency for Healthcare Research and Quality.
• The number of U.S. hospitals offering ECMO has more than doubled from 108 in 2008 to 264 today, according to a registry run by the Extracorporeal Life Support Organization (ELSO), which tracks most but not all ECMO programs.
• Low survival rate. Experts caution that ECMO is being used too often as a last-ditch attempt to buy more time for dying patients with poor chances of survival.
• ECMO is designed to be a bridge to recovery, organ transplant, or while waiting for transplant of an artificial heart. But when patients are too sick to reach those goals, ECMO can leave the patient in limbo, possibly even awake and alert, but with no chance of survival outside the intensive care unit.
• A person on ECMO cannot live outside the ICU and must be continuously monitored for complications, such as blood clots, bleeding, infection and loss of blood to the limbs.
• When patients receive ECPR (ECMO for cardiopulmonary resuscitation), 29% make it out of the hospital alive, according to international statistics from ELSO. Survival rates are higher for people who use ECMO for only the lungs (59%) or only the heart (42%), according to ELSO.
• ECMO is very expensive, mostly due to the labor involved. Median charges for ECMO in 2014 were $550,000, making it the 15th-most-costly procedure that year.
Plan for Your Future and Your Loved Ones
It sounds like you got a good head start by discussing your wishes with your husband and thinking about incapacity planning. To continue the conversation, things you may want to discuss include whether or not you choose to be resuscitated, whether or not you want to go into hospice, and what, if any, treatments doctors should provide to you near the end of your life. Here are some resources to help with this important conversation.
Since you have not yet signed an Advance Medical Directive, please contact us as soon as possible to schedule your appointment for our initial consultation:
Estate Planning Fairfax: 703-691-1888
Estate Planning Fredericksburg: 540-479-1435
Estate Planning Rockville: 301-519-8041
Estate Planning DC: 202-587-2797
About Renee Eder
