Why Do You Think You're Here?

The art of listening keeps resurfacing in my career as I transition from hospital, home health to clinic nursing.

28 years ago I was a staff nurse in a hospital on a medical/surgical unit. I liked to talk to my patients in the evening as I passed their bedtime meds and they lingered on the edge of sleep. Initially, lingering with them seemed almost selfish since my focus was on being an accurate and diligent nurse. Back then, I assumed the most important role of nursing was to interpret lab values correctly, always being observant for signs and symptoms of infection, complications, diligent in gathering data and vital signs, and getting everything charted.

The diligent part of nursing was more than a full time job by itself. Often my patients were angry at the inconvenience of being laid up. They were trying to manage their lives from their hospital beds, shouting orders and trying to carry on their tasks by phone from the hospital bed.  I found it interesting that as evening wore on and business hours ended, these business people would often become reflective and say that maybe they needed this stop in their lives to reflect on who they were and where they were going. They were so busy managing the tasks of their daily lives and keeping all the balls in action that they had totally forgotten about any relationships with their families and friends. They were running in the fast lane, high on adrenaline, and they thought they would catch up with relationships later. But now they had the time to take stock of where they were, and analyze who cared whether they lived or died. Often they didn’t like what they saw.

After 10 years I went into Home Health, and my focus switched from analyzing everything about Jane Doe’s pneumonia to looking at the big picture of everything she is and everything around her.  For about 2 years I alternated daily between hospital and home health nursing. I felt like I was asking my brain to swell and shrink every other day. I literally had headaches, with switching back and forth. The phrase “you can’t see the forest for the trees” had new meaning. It took me about 12 months to really learn how to see the forest. I had to learn the importance of the world as Jane perceived it, her overall health, her physical environment, and the relationships within her environment. I had more flexibility and focus in home health, and was able to look more deeply for the reason for her individual health problems. I enjoyed the luxury of fully reading her history and physicals, and reviewing her chart as far back as available. I was still under the impression that my most important function was connecting the lab and diagnostic tests to her health problems, assessing the medications she was taking and her response to them. Teaching her about her medications and how to take them correctly and filling out medication administration and teaching sheets. Assessing her diet, teaching her ways to improve her health and prevent re-hospitalizations. I case managed her care and added PT, OT, Social work, and community services as needed to improve our ability to fully achieve her optimal health.  Then I met Viola.

Viola had chronic pain due to Cauda Equina syndrome and should not have been able to walk.  She couldn’t feel her feet on the floor, and her legs were purple from her toes to half way up her thighs.  She was able to walk with a walker or by holding onto the walls. She walked stiffly, using her legs like boards. It was my job to evaluate her pain, instruct in medications and teach pain management, and case manage other services. Viola didn’t like talking about her pain, and had a rule that the only way she would talk to me was if I sat down and had a cup of coffee and a donut with her first.  After our coffee and donut, she was very cooperative in discussing pain level, reviewing medications and diet, assessing what she had tried before and working at adjusting pain meds based on the type of pain she was having. After about 6 weeks and several medication dose adjustments and different drugs, I finally admitted to Viola that I didn’t have any more ideas, and I was going to recommend that she be transferred to a different case manager. She was livid, I had never seen her angry before but she yelled at me and said, “How dare you think you’re God!”  I was totally confused. She said I had done more for her by talking to her, caring about her and sharing ideas with her,  than any other health care provider she had ever known. She said, “This is my pain, between me and God, and it isn’t yours to take away!” She had been told several years previously that she would not be able to walk, the pain would be unbearable. She had managed to mentally block the pain. She transferred her pain to thinking about other people’s families and lives, which gave her images and ideas to fill her mind. She would suck up the intricacies of our lives like a sponge. She didn’t like talking about her pain, because it caused her to have to let it in and think about it.

From that time forward, I decided to alter my practice and ask, “What do you want from Home Health? What are your goals, what would you like to work on? Why do you think you are sick?” I focused on communicating to my patients that they are my primary focus, we are going to work toward meeting  their needs and wants, and achieving their goals. My popularity rating grew, I received many thank You notes from my patients, and if my patients had another exacerbation they frequently asked for me by name. I was able to convince many of my Medicare patients that they were too young to be old, and needed to get back to their hobbies or reason for living. Our outcomes improved, they had hope, felt  valued, and had renewed purpose. 

I’ve been a clinic nurse for almost 2 years now and I’m doing care coordination and phone triage. I was curious what health concerns cause people to call in for advice or appointments. I discovered: the most important reason seems to be the need to be heard, know that someone cares, and know that someone  will follow through with your request.

 Sometimes they are chronically ill. I spoke with a gentleman with arm numbness.  He walked in to report that he was still having arm numbness that went from one arm to the other, never both and only at night when he is laying down.  I asked, “What do you think is wrong?”  He said, “Hmm, no one has asked me that before.  But, I have been thinking about that. When I forget my water pill and my legs hurt, my arms don’t hurt. When I take my water pill, my legs feel fine and then one of my arms will hurt.” We found out he always sleeps on his side, and he turns from side to side.  I asked if it was the arm up in the air or the arm that he is laying on that hurts? He didn’t know, he would investigate and let me know.  I would guess that he might lack blood pressure in the arm that is higher than his heart. It’s possible that our questions could save this gentleman from having an ultrasound to check for an obstruction, or CT or MRI to look for other points of pressure or constriction.

My patients need to know that they are my main focus. They have my undivided attention.  I really want to hear and understand what they have to say. They often have spent a lot of time analyzing what is happening to them and often have valuable insight. Listening can’t be rushed, and pain and frustration is often born of unrealistic fear.  I’m encouraged that the Art of Nursing, and listening, seem to be gaining ground in the role and focus of Case Management.     

Nurse training encompasses the whole of a person, who better to focus on all that a patient brings to the table than a nurse?

What if there is more to Health Care?

What if there is more to health care?

I’ve been a nurse for 28 years and I think I’ve seen a lot. I went into nursing because I love people. I want to see them smile. I’ve always prided myself on being a good nurse. I’ve given it my best. I have often wondered though if there isn’t more to health care when I listen to my patients say they don’t feel good, and their lab work comes back normal. They tell me they have had stomach pain for over 20 years and no one can figure it out. We have accepted medications with side effects that can be severely debilitating and even cause death. I wonder about the state of health care, is this really the best we can do?

  Sandy made me think. 

  Sandy was 29 years old; she had been admitted to the hospital for pain management and generalized weakness. After hospitalization, home health was ordered for Physical Therapy and walker training due to severe weakness. She had burning pain associated with a rash on her arms and legs. No one knew where the rash had come from or how to treat it. Most of her lab tests came back normal. She was diagnosed with: Rash unknown etiology, uncontrolled pain, unsteadiness of gait, narcolepsy, hypothyroidism, depression, anxiety, and gastroesophageal reflex. She was discharged from the hospital with a Fentanyl patch, Percocet, Flexeril, Naprosyn, Dextroamphetamine, Effexor, Synthroid, Topamax, Prevacid, and Zomig. She had been seen by Dermatology, Rheumatology and Infectious Diseases, and they could not come up with a diagnosis. The final decision she was told, was that it must be all in her head and the hospitalist ordered a Neuropsychology evaluation.

 I was to be her Home Health RN Case Manager, but I didn’t have any nursing visits approved by the insurance company since they didn’t have a clear diagnosis or need for teaching.  My role was just to case manage her chart. I was very intrigued by Sandy’s case, I called her on the phone weekly to discuss her pain, rash, and symptoms and to case manage her care. She was very determined to find the cause of her pain. She had two young children and a disabled husband who depended on her and she was not going to let them down. She thought there must be something negative written in her chart that made her doctors not want to listen to her, or they must think she is crazy. She said they were tired of trying to figure out what was wrong with her. Since she didn’t have faith in her current doctor, I helped her get a new Primary MD. 
The only significant finding on her initial nursing assessment, was that she had not had a bowel movement in 3 weeks.  I questioned her about this, but she said when she did have a bowel movement it took 3 hours of sitting on the toilet, was very painful, there was a lot of bleeding, until she finally passed a hard black rock. She didn’t want a bowel movement more frequently because of the pain. She had tried every laxative on the market and nothing worked. She did not like talking about it. She had been constipated for as long as she could remember. Her new primary MD did a thorough work up and all of her labs came back normal. We sent her to every specialist we could find looking for answers to why she had the rash and severe pain, a total of 22 doctors said she was within normal limits. The Neuropsychologist said she was not crazy, there was something physically wrong causing her rash, and to go back to her primary MD.
 After 2 months of calling her my time was up but I wanted to lay eyes on this woman for myself and see if she looked sick. I went to see her to discharge her from my care and say goodbye. She was thin, her legs were purple and cold, she looked like a concentration camp victim and we cried. She said I was the only one who had listened to her and now there was no one else.

 I had nightmares of guilt and desertion for a month. I had no one I could think of to call or follow up with her care, and she was very obviously dying. Then, I watched the movie “The Passion of the Christ” and decided if Jesus Christ could die for me, I could make sacrifices for this woman, I couldn’t live with the guilt of desertion. I called her the day after Easter and asked how she was doing. She said, she hadn’t had a bowel movement in 5 weeks, if a Twinkie was unwrapped she would eat it but she was too tired to open it. She was urinating once a day, her family was waiting for her to die. Every night her husband came home wondering if she would be alive. I asked if she would let me take her to a Naturopathic doctor and she said “Yes”.

 I called a Naturopathic doctor, referred by a friend of a friend, and literally carried this girl in to the appointment. She couldn’t remember the names and birth dates of her children, she couldn’t write her address. The Naturopathic doctor looked at her, then yelled at me. As a health care provider, how dare I let someone get into this state?

They gave her colon hydrotherapy for a few hours and she passed a couple of large black rocks followed by a large amount of blood. After the session she did feel better, her color was improved and she was able to walk with the walker and help. She wanted to continue. She was given a list of vitamins and herbs to take every 2 hours. One set was to detoxify and clean her out, 2 hours later she took supplements to build her up.

She had colon hydrotherapy every day for a week and it was like watching her come back from the dead. The 1^st day she was so weak she couldn’t think or walk by herself. The 3^rd day she talked non-stop like a cork had been pulled out of her brain. The 7^th day she walked without her walker and we all cried again. It was like Lazarus coming back from the dead.

Today she is happy and healthy and raising her children. Her problem was constipation which was not seen as significant but nearly killed her. Had I taken her to the ER she most likely would have required surgery and given her debilitated state I don’t think she could have tolerated it. She could have had IV fluids which she may have been able to tolerate but her kidneys were shutting down. Our health care system had let her down and she had no faith in it. Since her constipation was chronic, her body had learned to adapt and she was stooling through the 2^nd largest organ of elimination- her skin.

What was the cause of her illness? Her body was missing the lubrication she needed to move waste through her bowels. She now has a frequent regular BM by taking Aloe Vera Capsules daily. Due to her overall weakness and illness, she couldn’t work and was on Social Security Disability and Medical Assistance, her medications alone were more than $500/mo. Medical assistance paid for her to see 22 doctors who were not able to find the problem, but tried to the best of their ability with the tools that they had. I would estimate that the federal government easily paid over $100,000, not including her need for social security benefits – lost wages and stress on her family. Her Naturopathic treatments cost $2000, which I privately paid for, and she now spends about $15 per month for Aloe Vera capsules. What I learned from this case about health care alternatives, made me nearly quit Nursing. I felt like I had been in a closet my whole nursing career and someone opened the door.

First I was disgusted and angry; angry with my Nursing education that I didn’t know about Natural Medicine, angry that I was told it was quackery, angry with the American Medical Association and the limited education her doctors had received, angry with pharmaceuticals that nearly contributed to her death. She wanted to sue her doctors, the lawyer said he sympathized, he had gone to Europe for his knee procedure because he could get a much better recovery time there, rather than having a knee replacement in the United States. He even said that following the procedure on his knee, he was so excited he approached an Orthopedic Surgeon in the United States to suggest we do the procedure here and they didn’t want to hear it. Doing surgery provides income and support for hospitals, and counteracts the financial drain of the chronically ill medical population admitted to hospitals. The reality is that our Health care system would not survive without the money making surgeries that we perform.   He went on to say, that 22 doctors told my patient she was fine, he would have to find a doctor to go against 22 of his colleagues.

 I realized we have a systems problem and we need an upgrade.    

Since Sandy did not have nausea, vomiting, and abdominal distention her constipation was not seen as significant by the physicians that had evaluated her. As an infant she was constipated and routinely only had a bowel movement once a week. Sandy did not see the significance of her slow bowels and thought she must have some horrible disease causing her rash and symptoms. She made it all the way to her mid 20’s before her system was running out of ability to cope with inadequate colon function. As her body filled with toxins and waste, she developed severe burning pain. She started on narcotic pain meds further decreasing her bowel function and increasing her constipation. Her ability to cope was overloaded. 

How can we stop this from happening again?

Who are the Sandys in your life?