DNR Orders

ADDNRBack in 2012, I posted a couple of  entries on the use of DNR orders. Advanced Directives and Intellectual Disabilities: Part 1 and Advanced Directives and Intellectual Disabilities: Part 2. My opinions haven’t changed… but since a number of new MECP2 Duplication Syndrome families have joined the group, I since those were posted and some have faced decisions about these orders, I want to remind people about these posts and add couple of additional comments now.

While the discussion generally revolves around DNR (Do Not Resuscitate) orders, these order may have other names, for example, DNAR (Do Not Attempt Resuscitation) and the same discussion typically applies to related orders such as DNI (Do Not Intubate) orders.

I want to be clear that I do believe that there are appropriate uses for these orders, usually on a short-term basis, when death is imminent and unavoidable from a predictable cause. Usually these are issue in hospitals and are only good for a specified period of time before they expire.

Many of the problems associated with DNR orders have to do with unintended consequences or differences in what families and various health care professionals believe the orders mean. For example, in a discussion of a DNR order, it might be stated that it means that once the individuals heart stops, there will not be an attempt to restart it. Whether this also means that respiratory assistance to help maintain breathing would also be discontinued is not discussed, but the order may be interpreted that way.

Out of Hospital DNRs present some special problems. Again they may be appropriate in some cases. For example, a terminal cancer patient who might prefer to die at home or in a hospice may want to have one. One problem with them, however, is that they do not expire (at least in most places… laws may differ in different jurisdictions) so they may be issued in the midst of a health crisis (whether for good or bad reasons). However, if the individual makes it through that crisis, the order will remain active unless it is specifically discontinued, and even if it is discontinued one must be careful that this is properly communicated to everyone. For example, some states do not require schools to abide by DNR orders but others require it. While the doctor may have discontinued a DNR it may still be in the child’s school record, and the school may believe that they cannot provide first aid to the child or pass it on to the EMTs if they have to call emergency services.

In my opinion, the most important thing for families is to make sure that you are on the same page with your child’s Doctors and health care providers. If you believe that your child’s life is worth saving and the doctor does not, this may not be the best Doctor for your child. Keeping your child alive does require competent health care providers, but when it comes down to the crunch, it also requires highly motivated health care professionals. Personally, I can tell you that I have seen the difference. I seen a pediatrician work on my child from 4 to 11.30 pm who thought my child’s life was worth the effort, and heard another pediatrician tell me that she was not going to rush to the hospital when she was called at 2 AM to save my child because that child is not going to live a long life anyway. So, I think all parents of medically fragile children need to talk to their Docs about this topic. If you are not comfortable with the result, you may want to shop for another doctor.

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One response to “DNR Orders

  1. Pingback: Advanced Directives and Intellectual Disabilities: Part 2 | MECP2 Duplication Syndrome Blog

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