Choose Your Courageous Advocate Wisely

Some believe that if you have the right paper in place when you near your end, medical providers treating you will respect your wishes. It’s not always true. In hospitals, the doctors are busy measuring, testing, examining the data and using their tools. Amidst that, they can overlook the patient’s wishes near end of life. Some doctors seem to see a patient’s death as a failure on their part and they want to do everything to stop that on their watch. Unless one specified that they want doctors to “do everything”, which few people do want, hospital staff need direction from the family to know when to allow natural death.

Take the Do Not Resuscitate order, often referred to as, “DNR”. What exactly does that mean? DNR orders only apply if you stop breathing and do not want to be resuscitated. They do not apply to other, extraordinary measures to keep a person alive artificially. The DNR does not address things like being put on a ventilator, having multiple invasive tests, and having numerous IVs with an array of drugs in them to prop you up and delay the inevitable. To stop that from happening, one needs a different paper from a DNR order. That different paper is an advance healthcare directive, sometimes call a healthcare proxy or healthcare POA. If you have one, the issue is getting the treating doctors to follow it.

The Urgent Phone Call

In a real life example, I was asked about a most urgent matter. A friend begged me to call the wife of a man she knew who was in the hospital, near death. He had multiple medical conditions and had essentially no chance of surviving. I am a retired RN and attorney at AgingParents.com and I get requests for advice on just about anything you can imagine. This was not the first situation of its kind I had seen. The wife of the dying man was at his bedside. She had a DNR order among his papers, she said, but not with her. What was going on?, I asked. “They’ve resuscitated him eleven times”, she said and she didn’t know what to do. She thought it was time to let him go, but she didn’t know how to do it. He was not conscious and could not speak for himself. Doctors came and went all the time, and they had him on a ventilator and other machines, she said. They were repeatedly poking and prodding and taking blood

samples. She was distraught, feeling helpless and conflicted.

What Did Her Husband Really Want?

Did he have a DNR, I asked. Yes. Has she shown the doctors and nurses the DNR? She had not. I asked her whether she wanted her husband to leave this life surrounded by doctors frantically resuscitating him over and over and keeping him going on all the machines. What had he said about his wishes? Did his healthcare directive say he wanted to be able to die in peace, surrounded by family without the onslaught of artificial means? She said, “ he wants to be with family, no one else”. I asked if she was okay with telling the doctors to stop. She and her son, both on the call, agreed that they could tell the doctors to let go. They needed encouragement and the right words, along with reassurance that this was what the husband and father had said he wanted. I offered that. I heard an audible sigh of relief on that call.

She and her son did tell the doctors to stop resuscitating the poor fellow. She told them to knock it off with the ventilator and other machines. “Let him go peacefully” she said. They agreed. He passed quietly, almost immediately, surrounded by family, no doctors in the room. His wife was the appointed person to make the decision to “pull the plug”. It was very hard to let him go. But she knew that it was just wrong and contrary to his legal paperwork to keep resuscitating him over and over. He could not breathe on his own at all and it was his time. She honored what her husband wanted. She had to stand up for his rights. She just needed a little information and a nudge, as she later told me.

The Takeaways

1. Speak up. Having a DNR on hand or even in the patient’s chart at a hospital may not be enough to get their wishes honored. If you, or someone you love goes to a hospital and you know what their wishes are, advocate for them.
2. Have the right legal documents in hand when you go to a hospital to visit your loved one. Get a copy before they are admitted or soon after, even if the doctor who treated them before has those papers. Different personnel in the hospital may not have the documents. They may not look for them either.
3. Without legal permission to stop treating, the hospital personnel will likely keep doing everything they can to keep someone alive, even by totally artificial means. Legal permission is in those pieces of paper (can be stored on an app).
4. In the minds of many, being kept alive artificially with drugs, ventilators, IVs and other things that sustain breathing is not they way they want to go. If you don’t want artificial means to prolong your life near the end, be sure you have an advocate to communicate your wishes and see that they are respected.
5. Make your last wishes on legal documents specific as to what you do and don’t want. Your advocate must not be afraid to tell medical personnel to honor those wishes. When treatment or no more treatment is a choice, you have a right your own choice about the way you want to go. Everyone deserves a dignified end.