Some believe that if you have the right paperwork in place when you near your end, the healthcare providers treating you will respect your wishes. This is not always true. In hospitals, doctors are busy measuring, testing, reviewing data and using their tools. In the midst of this, they may ignore the wishes of the end-of-life patient. Some doctors seem to see the death of a patient as a failure on their part and they want to do everything to stop it on their watch. Unless it is specified that they want physicians to “do everything,” which few people want, hospital staff need guidance from family to know when allow natural death.
Take a do-not-resuscitate order, often called a “DNR”. What does that mean exactly? DNR orders only apply if you stop breathing and do not wish to be revived. They do not apply to other extraordinary measures aimed at artificially keeping a person alive. The DNR does not address things like being put on a ventilator, having multiple invasive tests, and having numerous IVs containing a range of medications to support you and delay the inevitable. To prevent this from happening, a different paper than a DNR order is required. This other document is an advance health care directive, sometimes referred to as a health care proxy or health care power of attorney. If you have one, the problem is to have it followed by the attending physicians.
The urgent phone call
In a concrete example, I was asked about a most pressing issue. A friend begged me to call the wife of a man she knew who was in hospital near death. He suffered from several health problems and had almost no chance of surviving. I’m a retired RN and attorney at AgingParents.com and get requests for advice on just about anything you can imagine. It was not the first situation of this kind that I had seen. The dying man’s wife was at his bedside. She had a DNR order among her papers, she said, but not with her. What was going on? I asked. “They raised him eleven times”, she said and she did not know what to do. She thought it was time to let him go, but she didn’t know how. He was unconscious and could not speak for himself. Doctors were coming and going all the time, and they had him on a ventilator and other machines, she said. They repeatedly pushed and pushed and drew blood
samples. She was upset, feeling helpless and conflicted.
What did her husband really want?
Did he have a DNR, I asked. Yes. Did she show the doctors and nurses the DNR? She hadn’t. I asked her if she wanted her husband to leave this life surrounded by doctors frantically resuscitating him over and over and keeping him on every machine. What had he said of his wishes? Did his medical directive say he wanted to be able to die in peace, surrounded by his family without the onslaught of artificial means? She said, “He wants to be with his family, no one else.” I asked her if she was okay with telling the doctors to stop. She and her son, both on the phone, agreed they could tell the doctors to let go. They needed encouragement and the right words, as well as reassurance that this was what the husband and father had said he wanted. I offered this. I heard an audible sigh of relief at that call.
She and her son told the doctors to stop resuscitating the poor boy. She told them to knock it down with the fan and other machines. “Let him go in peace,” she said. They agreed. He passed quietly, almost immediately, surrounded by his family, no doctors in the room. His wife was the designated person to make the decision to “pull the plug”. It was very hard to let him go. But she knew it was just plain wrong and against her legal papers to keep resuscitating him over and over again. He couldn’t breathe on his own at all and it was his time. She honored what her husband wanted. She had to defend her rights. She just needed a little information and a helping hand, as she told me later.
- express yourself. Having a DNR on hand or even in the patient’s chart at a hospital may not be enough to have their wishes honored. If you, or someone you love, go to the hospital and you know what their wishes are, stand up for them.
- Have the right legal documents in hand when you go to the 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 these papers. Different hospital staff may not have the documents. They may not look for them either.
- Without legal permission to stop treatment, hospital staff will likely continue to do whatever they can to keep someone alive., even by totally artificial means. The legal permission is in those pieces of paper (can be stored on an app).
- In the minds of many, being kept alive artificially with drugs, ventilators, IVs and other breathing-supporting things is not the path they want to go down. If you don’t want artificial means to prolong your life towards the end, make sure you have a lawyer to communicate your wishes and make sure they are respected.
- Specify your last wishes on legal documents as to what you do and don’t want. Your attorney should not be afraid to tell medical staff to honor those wishes. When treatment or withdrawal of treatment is a choice, you have the right to choose for yourself the path you wish to follow. Everyone deserves a dignified end.