Bring a Photo to the Hospital
The elderly are too often mishandled and their wishes ignored in Emergency Departments. The story below shows one example of what can happen. And there is a way to try to get the ED staff to pay attention and give your elderly relative the appropriate medical care they need. When on older relative or friend calls you and a trip to the ED is needed, on the way grab a recent photo of them when they were well, one that you can spare and leave with their medical chart. As you’re helping explain their medical history show the staff the picture of how they looked when they were well, active, and feeling great. Tell them, “Here’s how they looked just a few days ago. And look at her now.” Ask them to put the photo in the medical chart with a note saying here’s how the patient looked before admission.
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How the “Bring a Photo to the Hospital” Conversation Got Started
Jennifer’s parents, Mary and Jim, were still living at home. They had reached the stage in life when the two of them together added up to one full functioning person. After sixty years of marriage they filled in for each other’s omissions and errors smoothly. Jim was doing well, just a touch of arthritis. Mary was having problems. Twenty-five years before she’d had adenocarcinoma of the colon, colon cancer. The primary tumor was removed but there were local lymph nodes questionably positive for cancer cells. The oncologist asked whether she would want to have chemotherapy or radiation therapy “just to be sure” to kill all the cancer cells or do nothing more and wait and see if there were any cancer recurrence.
It Had Been the Right Decision for Twenty-Five Years
It was a tense time and a tough decision. Mary’s doctors explained the choices and the benefits and risks of each choice to Mary and Jim. Doing nothing with maybe having cancer cells living in lymph node felt too scary. So, chemotherapy or radiation therapy. With chemotherapy she would feel ill a lot for the next year and would lose all her hair. Not so with radiation therapy. So, radiation therapy was chosen and all went well for the next twenty-five years. There was no cancer recurrence and she had no problems. What wasn’t well understood and so wasn’t explained to Mary was that the radiation therapy damages the bowel. During that twenty-five years the world of radiation oncology realized the existence of this risk of the therapy and learned a lot about it.
Radiation Therapy for Colon Cancer – Your Bowel Can Fall Apart
While it’s true that the radiation zaps the rascal cancer cells still left in the body, it also hits the other tissues of the small bowel and colon. But, it takes a very long time to be a problem, and sometimes it’s never a problem. The cancer might recur anyway and the person could die of colon cancer. Or the person might die of any other cause before the bowel damage is a medical problem. And some people don’t seem to have the colon damage. But Mary did have it and lived long enough for it to be a problem. She was at times bleeding into her bowel.
Deteriorating Bowel Tissues and Radiation-Induced Liver Disease
Mary also had radiation-induced liver disease in addition to the bowel tissue injury. Vitamin K is used by the liver to make proteins needed for blood clotting. When the liver is damaged such that it can’t convert enough vitamin K into the needed proteins, the person bleeds easily and the bleeding won’t stop. So blood would slowly leak into Mary’s bowel and she would become anemic, weak, and pale. The result was that for months she’d be fine, especially with Jim to help. She’d take walks with her friends, go grocery shopping, and do some housework. But then a day would come when she would almost collapse with anemia and look like “death-warmed-over”, looking decrepit and awful. But with a trip to the Emergency Department and a couple of units of packed red blood cells in a day or two she was fine.
Jennifer Got the Call from her Dad, Jim, to Help
Mary had one of those anemic episodes and Jennifer’s dad called her to help take Mary to the hospital. When Jennifer got to her parents’ home her mother was not yet dressed for the day. She and her dad got her mom into casual clothes, got her purse with her IDs and insurance cards, and bundled her into the car. They got her to the Emergency Department. As was typical her mother was in bad shape even though just the day before she seemed fine. She was 81 years old. The Emergency Department staff checked her in, the doctor got her history from Jim and Jennifer, did his physical exam, and ordered lab tests. Her red blood cell count was way, way down. Severe anemia. And, truly, she really did not look well at all. They admitted her to the hospital and ordered two units of packed cells.
To Live or To Die – What an Odd Question
Jennifer and her dad found out which ward she would be in and went there to wait. The nurses were bringing her up from the ED with the usual bags of liquid on poles and a blood pressure cuff around one arm. They wheeled her into a semi-private room. In the ED they had gotten her into a hospital gown. They gave Jennifer a bag with her street clothes and shoes. A nurse came in with an iPad tablet and began reviewing questions about dietary preferences and emergency contact people and numbers. Then the nurse said something that completely blew Jennifer away. She confirmed that her mother told the ED doctor that she wanted to be DNR.
What? Whoa! Wait a Minute! DNR?
That comment grabbed Jennifer’s attention. “Wait. What’s DNR?” The nurse explained that DNR was “Do Not Resuscitate”. It meant that if there was a “medical event” while in the hospital her mother did not want to be resuscitated. “That’s not true!” Jennifer said, clear alarm in her voice. “Of course she wants to be resuscitated.” She looked at her mother. “Mom, if you have a heart attack or something while you’re in here, do you want them to resuscitate you?” “Sure, yes, absolutely. Why?”, her mother replied. Jennifer explained that, from the ED, they have it in her medical record that she did not want to be resuscitated. Jennifer’s mother had no idea where they got that bit of misinformation and told the nurse to take the DNR out of her chart.
Happily, an Uneventful Hospital Stay
All went well in the hospital. As usual, with the transfusion and a day’s rest she felt well again quickly. She was discharged from the hospital and Jim and Jennifer got a wheelchair to take her to the car. As they were getting her into the car Mary saw a couple of the nurses whom she had met in the ED when she was admitted. She said high and they looked blank, said a weak hello back, and looked puzzled. Jennifer’s mom said her name and said, “I met you a two days ago in the ER.” Both nurses looked shocked. They brightened, big smiles, and came and gave her a goodbye hug. One said, “We’re sorry. You look like a completely different person now that you’re feeling better.”
Home Again for Jennifer’s Mother – But A Scary New Revelation
The threesome headed home, and her mother was glad to be back in her own house and her kitchen. A few days later Jennifer came over and helped her mother set up an online account with the hospital so that she could download her medical record. They downloaded it and printed a copy. That’s when the trouble started. As Jennifer and Mary read it they saw something that both angered and terrified her. The DNR order, the “No Not Resuscitate” order, was still in the record as valid. It appeared that it had never been taken off her record. If her mother had had a stroke or something in the hospital they would have let her die! Jennifer, Mary, and Jim were furious.
Trying to Hold the Hospital Accountable
Jennifer had her mother call the hospital to demand the DNR be taken out of her record. From the printed record it appeared that an ED doc had put the DNR order in the chart. No one had ever removed it. No one had removed it despite her mother making it clear to the admitting nurse on the floor that she DID want to be resuscitated in case of some medical event. The phone robo-triage got her to the ward where she had been a patient. They said she had to talk to the ED people since the doc there had put the DNR order in the chart. The ED staff said she had to talk to Medical Records, and transferred her call. Medical records said she could not change a DNR order over the phone. She had to come to the hospital and talk with someone.
Back to the Hospital – Well and Healthy This Time
The whole family, all three of them, Jennifer and her parents, went to the hospital. Her mother was armed with her driver’s license, her Social Security card, her Medicare card, and her Humana Medicare Supplement insurance card. She was ready to show that she was she. They went to Medical Records. The staff sent for a senior-level nurse to come talk with them. From there it was actually really simple. Jennifer’s mom told the nurse that she did not want to be in the hospital records as DNR. The nurse said fine, no problem, they would remove it.
Well, Okay, Maybe, But What Went Wrong?
The nurse helping them did not know what went wrong. The doctor in the ED had put the order in. It would be assumed that he had talked with Jennifer’s mother, confirmed that she wanted to be DNR, and put the order in her record. But it was just a checkbox in the electronic record. One checkbox for yes, one for no. Maybe he just checked the wrong box. The nurse also could not explain why it was not taken out when they asked for it to be removed when they first got to her hospital room that day. In any case, it was out of her record now, with apologies.
The Solution Is Not Obvious – Bring a Photo to the Hospital
When they got home her mother logged in and checked the record to make sure the hospital had changed it. Thank goodness, the DNR order was gone. A few weeks later Jim told the whole messy story to a retired nurse he knew from the local YMCA. They were in an Arthritis Aquatics swimming class together. The nurse said she had heard this story before. A patient will come into the ED looking more dead than alive. The ED doctor, based on appearance or maybe by accident, will check the DNR box. Hey, the ED is busy. There are times when the physician thinks he talked to someone but didn’t. When someone looks almost dead people might think maybe they shouldn’t be resuscitated.
One of our Rhode Island Readers Asked:
What would have happened if Mary had a heart attack in the hospital and they let her die?
Well, to start, whatever might have happened, Jim would be a widower and Jennifer would have lost her mother. Could there be a lawsuit? The Emergency Department physician could say that Mary did say she wanted to be DNR. It would legally be “he said, she said” when he is a doctor standing there alive and Mary’s deceased. The nurse on the unit could deny that the conversation about DNR ever happened. It would be a hard lawsuit to win. And even if a lawsuit were filed and Jim won, what would the damages be? Mary was not producing an income and, in fact, with her medical problems was costing the couple money. It would be hard to show that losing his wife was anything but an emotional loss. And anyway, Jim was not the type to pay a lawyer and file a lawsuit.
Well, That’s Pathetic Practice for a Doctor – So Bring a Photo to the Hospital
This experienced, retired nurse offered Jim this advice. Whenever you’re taking a gravely-ill older relative to the ED, take along a hardcopy recent photo of them, a copy you can spare to give away. It should be a picture of when they were well and feeling great, just before they fell ill. Tell the staff to put the photo in their medical chart. Then, confirm very clearly and assuredly that, if a medical event occurs, the person wants to be resuscitated. So often an elderly ill person comes to the ED looking “half-dead” pathetic. It’s hard to believe that they were active in life and in robust good health just a few days earlier. The photo gives the staff, even hurried staff, a better idea of the person, not just of the patient.
Well, I’ll Be Damned! – Bring a Photo to the Hospital
It’s all very upsetting. For one, how would a doctor accidently make a patient DNR without permission. And, how could a hospital leave the person on DNR status after she says that she wants to be resuscitated, yes, please do resuscitate me. But best and finally, how simple a solution! Take a hardcopy photo you can spare. Show that the person was robust and engaged in life recently. Show the staff that they’re not about to die. You want the staff to save them. To get them back to where they were. To make them well again.
Arken Legal on the Rise in Inappropriate DNR Orders