The following post was written by Ryan on social media after a story about a young couple having to say goodbye to their baby was released. It is not on the topic of Down Syndrome necessarily, but it offers some insights about end of life decisions which will effect all of us at some point.
“It is never easy having someone you love get sick, and then thinking that after a while modern medicine will surely keep them healthy or help them pull through. As a critical care nurse I am a little jaded towards modern medicine more so than most. I know that my previous statement may raise alarms in some people’s minds so let me explain what I mean.
Modern medicine from my point of view is both a blessing, and a curse. We can work hard to perform miracles and bring people back from death (or the point of death) and see them sometimes go home to live a few more years with their families. I have seen the opposite happen, and patients slowly and painfully deteriorate on ventilators until their is no hope, the heart simply gives out and the patient dies.
Often times families think that we can always keep a patient alive no matter their condition. They have open hostility to those medical professionals that would be the voice of truth and say this simply isn’t true. A quick google search will bring up results of post code blue (or cardiopulmonary arrest) mortality rates as reported in studies on the NLM website. You can read the full study here:http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2945517/
or the conclusion of the statistics here:
In-hospital CPR for cardiopulmonary arrest was associated with 30.4% success at our center at the end of CPR but only 12% were alive at discharge. Duration of CPR >10 minutes was predictive of significantly decreased survival to discharge.
12% of people who have CPR performed survive in this particular study. 12 percent chance of walking out of the hospital alive after CPR; I have had one Doctor tell me that the chance of survival after cpr is usually less than 10%. There are so many factors that contribute to even this statistic such as comorbidities, current state of health (including the state of the patients hemodynamic stability), and many more.
As you can see that it is never the case that we can always save you in modern medicine. I am by no means saying that we should never ever try to save someones life, and quite the contrary. I am all for attempting to save someones life with a realistic and down to earth view of what can and cannot be done. Many times we try to act like God and save people who simply can’t be saved. An old LPN friend of mine once told me “When it is your time to go home, there is nothing on this Earth that will save you. Nothing.” So I say to all that read this be prepared. We medical professionsals will do all within our power to save you, but please understand that we can’t save everyone. When it is your time to go home it simply is your time to go. Please try to understand that when a Doctor says “I am sorry, there is nothing else we can do. Your loved one is not going to make it” it isn’t because we have given up, but we realize there is nothing left and your loved ones time has come.
The best thing that anyone can do for themselves is know that we are deeply and passionately driven to save lives, but we are also just as deeply and passionately driven to prevent needless suffering, and this is where my jaded attitude towards modern medicine needs to be checked. Many times we are driven to protect our patients from harm, and sometimes that includes modern medicine. It isn’t always appropriate to continue care of a patient, and try to understand it is never due to us wanting your loved one to not make it. It is simply that we don’t want to watch them suffer and also we don’t want to watch you suffer when all options have been depleted.
I am deeply passionate about what I do. I am a critical care RN. I have loads to learn, but one of the most important lessons I have learned over the past few years is to be passionate about my care not just for the patient but for the families. I attempt to utilize a holistic approach to my care and let my families as well as my patients understand that we are only here to help the patient and in doing so sometimes that requires letting them go.
There are many who would disagree with what this young couple has chosen to do. I have never faced the time when I had to make a decision a bout someone I love more deeply than any others around. I know that at some point in my life this is likely to happen for me or for Natalie making that choice about me.
I am thankful for this young couple’s view on what can and cannot be done. I ask that you join me in praying as the mourn the death of their child, and at the same time celebrate the life they were able to have with him.
Take this time to talk with your spouse, children, parents, and friends about what you expect should you become severely ill, have a wreck, or some other medical emergency. I promise you that it can happen unexpectedly and it is always helpful for you and your family to have a game plan. Talk about this important issue as now more than ever the line between meaningful life and a life where someone should never have remained is blurred; to often do we truly attempt to play God.