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CASE STUDY

Scenic Painting

I grew up in Oklahoma and I went to Oklahoma State University where I met my husband, Fred. We met when we were both enrolled in a theater class called Scenic Painting. We were both procrastinators, and the night before a painting project was due we would both arrive at 10:00 p.m. and start painting. We would paint and we would fight. I don't know if you have pulled all-nighters with people on a regular basis, but all the filters come down. So we talked all night about religion and God and entertainment and Stephen King, because we were both huge Stephen King fans. And after an entire semester of throwing paintbrushes at each other and having huge arguments, we realized we had fallen in love in the best way you possibly can because you've seen it all already.

Well, time passed. We married and were living in Washington, D.C. We had two wonderful sons, Freddie and Isaac. By that time, my husband had a PhD in film studies, but we had a very limited income. Fred and I had six jobs between us. But even with six jobs we were living in a one-bedroom apartment and could not afford family health insurance. I was insured through my retail job in a toy store, but it didn't provide coverage for the rest of the family. Fred worked as an adjunct professor and a clerk and had no insurance. We only went for sick care, which meant that Fred didn't have a lot of continuity of records or information.

In the summer of 2008 our prayers were answered. Fred was hired in a 1-year full-time appointed position at American University. It was the job my husband had always wanted, and it carried full benefits, including health insurance.

"That's What the Doctor Said"

That fall Fred often complained of fatigue, but he thought, "Well, I'm working so hard at this new job; that's probably it." He was losing weight, but he had been getting fit and eating right, and we just thought he was doing a really good job with his diet. He went to the doctor and she said he had high blood pressure. We thought it was weird that he should be getting high blood pressure now, when he was so much thinner than he had been. But that was what the doctor said, so he was started on blood pressure medications.

In January the following year he started complaining of chest pain. He went to the emergency room, and they said he had broken a rib coughing. I was questioning it, but my husband said, "That's what the doctor said."

Then, in February, Fred started having lower back pain, to the point that he had to lie down all the time because it hurt to sit. He kept going back to the doctor, and she kept giving him pain medications. Then he developed another problem as a side effect of the pain medications, and she had to prescribe laxatives for that. By March he was on four types of painkillers, two types of muscle relaxants, four types of laxatives, and we still didn't know what was wrong.

On Friday March 13, my husband hurt so bad he was crying. I said, "Honey, they're not going to be able to get you in to the office. It's too late. It's 5:00 on a Friday afternoon. Let's go to the emergency room.

We can at least find out what's wrong with you." So I gathered up a bag of toys for the children and we went to the emergency room. We waited for about 3 hours until finally somebody came and said that they were backed up and we might as well go home. They gave Fred some more pain medications and said he should go see his doctor.

So the next week he went back to the doctor. This time I went with him because I thought, this has gone on too long. The doctor came into the examining room carrying a flip chart. She was looking down at the flip chart and she said, "So Mr. Holliday, do you think maybe you are depressed?" I said, "Of course he's depressed! He's in pain all the time, and you don't know what's wrong with him. We're worried. I think it's his kidneys."

And she said, "No, it's a protuberance of lumbar 5. Some people have this and don't need surgery, and some people do. So we'll just do some more x-rays and find out." I said, "No, we're going to perform a MRI, because we need to find out what's wrong. And he is claustrophobic, so we want an open MRI and we want it this week." There was only one open MRI facilityin Olney, Maryland, a tiny town outside Washington, D.C.that could see him that week. So Fred drove all the way out there and had the MRI. They gave it to him on a CD and he drove it all the way back into the city, handed it to her, and 4 days later she called us.

She said she wanted us to make an appointment with someone she knew who was an oncologist. I didn't even know what an oncologist was. I had to go online and find out. I said, "He just has a protuberance of lumbar 5. Why do we want to see a cancer doctor?"

She said, "We just want to make sure everything is all right."

Tumors and Growths

We went the next day to the oncologist. By this time Fred could hardly walk. They admitted him straight to the hospital for tests. We waited 3 hours to get a room. Then after I got him all set up they said, "We're going to need all his pills." So I went home on the Metro system to get his pills and bring them back to them, so they could figure out what he was already on. I made sure Fred was comfortable and then I went home to take care of the kids. I thought I could do that. I didn't know you weren't supposed to leave a patient by himself.

A day later, on March 27, I'm at work selling toys. And my boss comes to me with the phone and he says, "Reggie, it's your husband." I answered the phone. Fred said, "Reggie, I'm so scared. The doctor was in my room and he says that I have tumors and growths in my abdomen, and he says that there is a 3-centimeter tumor in my kidney, and I don't know what's going on. Can you please get here as soon as possible?"

I left work and I got there in 30 minutes. I talked to my husband and calmed him down and said, "I'm going to find out what's going on." And I went to look for the doctor. But I found out that the doctor had left town in the last 30 minutes for a 4-day medical conference. He would not return phone calls or emails and there was no way to talk to him.

My husband's parents came into town, and we all sat in that room for 10- and 12-hour days, just waiting for someone to talk to us. On the fourth day, an on-call doctor came into the room. She walked right past us and went to look at the PCA pump. And we said, "What about his tests? What are the results?" She just looked at us. She said, "You mean nobody's talked to you? Nobody's told you?" We said, "No, we've been waiting for days. No one talks to us." And she said, "Oh! Well, it's spread. It's everywhere. It's in his bones and in his lungs."

So that night I went home and Googled what that meant. It meant my husband had stage 4 kidney cancer and he probably wasn't going to live more than a few months.

Little Miss A-Type Personality

When the doctor got back to town later that week he visited my husband during 7:30 a.m. rounds. I wasn't there yet because I was taking the kids to school. He said, "So I understand your wife has been asking questions about this case." My husband was a really good patient and didn't want to make waves, and the way he asked it frightened him. He said, "Yes, she's been asking questions." And the doctor said, "Well, if little Miss A-type personality has questions she needs to come to my office hours."

So I dressed in my church dress and I went at 9:00 in the morning to his office hours. He never closed the door in the 15 minutes I was there. He never stopped taking phone calls. He never turned the computer screen around so I could see what he was talking about. He didn't stop talking to the nurse about a parking lot problem where one employee kept parking in the wrong space, or that Mrs. Rose's chemotherapy suite wasn't ready for that afternoon and he needed it to be ready ASAP. When he talked to me, he used words I didn't understand and he spoke very rapidly.

I said, "Please, please, slow down, because I am writing everything down so I can research it later online." He said, "I don't like people who research online." I said, "Well, I don't have a background in medicine, so the only way I can understand you is to look these words up online." He said, "That's right. I'm the one with the medical degree." It felt horrible to be treated this way. It felt like Fred and I weren't part of the care team.

"Don't Worry About the List"

Fred's care at the hospital was terrible. His sheets were not changed for days. He was moved 20 times from bed to gurney even though he had a pathologic hip fracture. Once he could no longer walk to the bathroom I often had to change him myself and apply ointment I had brought from home. He was left for days with a dangerously distended bladder and never given a urinary catheter. They keep telling us they were trying to line up surgery for his kidney cancer, but it didn't happen.

Finally, after 3 weeks, I went down to the medical records department. I wanted the entire medical record. I wanted to see in writing what was wrong with my husband. And when I got down there they said it would be 73 cents per page and a 21-day wait. I said, "You mean it is going to cost hundreds of dollars to get my husband's medical record?" They said, "Well, yeah. That's just the way it is." "And I have to wait 21 days? He's upstairs right now!" They said, "That's just the system." So I went back to my husband's room.

About 9:00 a.m. the next day the doctor came in. He stood by the door, about 10 feet from the bed. I said, "We have the list!" We had a list of questions for him, things like: When are we going to get a palliative consult? When are we going to get a walker so he can try to walk again? And chemotherapy? And when are you going to give us surgery?

He said, "Don't worry about the list. We have decided we are sending you home on a PCA pump."

And that's when my husband began to cry. Because they were just sending him home to die. We had been there 3 weeks, we didn't know what was going on, and they were sending him home to die. And then the doctor left. My husband turned to me and said, "You go after them, Regina. You try to get me care."

It was a Saturday. I couldn't that day or the next, but on Monday I fired the primary care doctor who never visited and I got my own primary care doctor to take my husband on. I called all the oncology practices to get a second opinion. I found a hospital willing to take him and I barred the oncologist from the roomeverything to make sure we got better care.

Medical Facts

It took 3 more days, but we were transferred by ambulance to another facility. The first hospital was not helpful. When they sent us to the second hospital, they sent us with an out-of-date and incomplete medical record and transfer summary. It was 2 weeks old. So when Fred got to the new hospital, they could not provide care. All they could do was give him a bed. They said, "We can't even feed you, because you don't have dietary orders." The nurse said, "You can go down to the pizzeria and we'll pretend we didn't see you." That's how I fed my husband that night.

He was in excruciating pain because he didn't have any pain medication. I stayed at his side for the next 6 hours, trying to calm him down, until finally they cobbled together a medical record using a phone and a fax machine and were able to give him his pain medication. The next day, Fred's doctors came into the room, stood next to his bed and touched him and held his hand. Fred was so happy. Then they took me aside and said, "We want you to go back to the old hospital. We want you to get the entire medical record."

"Ha!" I said. "I tried that. They won't give it to me." They said, "Well, they will this time, because you're a courier."

I went back and they printed out the record in an hour and a half to give to the new doctors. I took it, and the new doctors read it for about an hour, and then they gave it back to me. They told me, "If you always have this medical record with you, your husband is going to get better care." So I read it in the next 3 hours. And I became so angry, because it was full of information, that if we could have only read it at the time we could have intervened and he wouldn't have suffered as much. There were also errors that we could have corrected if we had known. The words written in the record didn't reflect what actually happened.

When I saw his record, I thought, I may not have a medical degree, but I can paint about this. So I created a visual example, based on the nutrition facts label, of my husband's chart, everything that everybody should know about this man before they touched him. I even color-coded it, so you could see that these are the points of bone metastases and these are the points of soft tissue metastases; the fact that he's catheterized and incontinent. All these things just available at a glance, so you could give him appropriate care. And then I took this and I painted it on a wall. There was a delicatessen in my neighborhood and they had 5 6 feet of space and they said, "Yes, you can paint it there." It's right next to the menu in the delicatessen. And everybody, all our neighbors saw: this is what's going on.

Growing the Network

All this time I used Facebook as a way to keep people up-to-date on Fred's progress. I grew this huge network of people, and they are all still my friends today. They're all still supporting us. Then I got on Twitter because a toy store customer told me about a guy called e-Patient Dave, who had survived stage 4 kidney cancer.1 I said, "I have to talk to e-Patient Dave! How do I talk to him?" They said, "You've got to get on Twitter."

So that night with the help of my 10-year-old autistic son, I got on Twitter and sent my first tweet. It said, "I want to find Christina Kraft or e-Patient Dave." The very next day e-Patient Dave found me, and by that night I was on the phone with e-Patient Dave's oncologist, a foremost authority on kidney cancer.

And that man was brave. He was willing to do "the talk." You know the talk? That sometimes it is too late. Sometimes you can be 38 years old and the father of two young children and the day you get to the hospital, it's too late. That talk had never happened, ever, to any of us in the family. But this man from Twitter, he told me.

Through Twitter we met a lot of healthcare innovators from the e-health movement, Health 2.0.2 I had a wonderful conversation with them, and they encouraged me to do something I had never thought ofblogging.

Conclusion

While these things were happening, Fred was moved to a hospice. Fred loved hospice. They took care of his pain. They didn't wake him up in the middle of the night. He was happy there. But after 3 weeks the discharge nurse came up to me and said, "Your husband's stable, so we need to send him home now."

I said, "But we have a one-bedroom apartment. How are we going to make that work?" They said, "Have you considered moving?" So we moved. In about a 24-hour time frame, with the help of 20 friends, we moved from a one-bedroom to a two-bedroom apartment that, thank God, was handicap accessible.

So I took my husband home. I only had four chucks (bed pads): I had one under him, one ready to go, one in the wash, and one in the dryer, to constantly keep him clean so he wouldn't get bedsores. I had bruises up and down my arms from trying to lift his body and care for him. We would only see a hospice nurse or a tech every other day. On the fourth day, the hospice nurse said to us, "You know, I think you should go back to hospice. This is not easy in your home." I said, "What?! You made us move! You made me uproot our whole family!"

"Well, that's how insurance works. You have to prove you're not able to do it and then you go back." I said, "No. This is not how it works. I swore to him, I promised him, that this would be the last move." And we stayed in our new apartment.

Then on the night of June 16, Fred called out, "Reggie, Reggie, my catheter blew!" I said, "Oh, it's okay, I'll clean it up." And I called the hospice nurse and she came in 2 hours. At 2:00 in the morning she was placing a new catheter and my husband said, "You are so good at that!" She said, "I was a VA (Veterans Affairs) nurse." And then she swept our floor. I said, "You don't have to sweep our floor." She said, "Just go be with your husband."

And then she left. And for the next 4 hours I just talked with my husband. It was just like Scenic Painting back at Oklahoma State. We talked about Stephen King and Jon Stewart and we talked about our kids and all these great things. And sometimes he didn't make sense. Sometimes he talked like he was talking to someone he knew when he was 6. But a lot of times it made sense; a lot of times it was my husband again.

Then at 6:30 he said, "Reggie, you look so tired. You should go to sleep." I slept for 1 hour, because his 7:30 medications were due. At 7:30 a.m. I got up and got his meds, but he wouldn't wake up. He moved his lips and managed to swallow, but he never talked again. Two hours later, he could hardly breathe. I ran for the children. I said, "Come on, kids. I think it's time." We gathered around the bed. And we said, "We love you, Daddy. We love you so much. But it's okay. It's okay to go. We will miss you, but it's okay."

And he stopped breathing. The hospice nurse came. She said, "Would you like to help clean the body?" So I held him, for the first time in weeks. He was warm. And I loved him so much.

Questions

1. Review the instances of poor care coordination in Fred's case. Do you think that technology can provide the fix for these problems, or is the issue a lack of human teamwork and a system that does not accommodate the needs of patients and families?
2. What do you think are the factors that contribute to a delay in diagnosis in a case like Fred's, in which the patient is gradually but steadily declining? What in the working environment of the providers might have contributed to this failure to investigate the underlying cause of a patient's symptoms?
3. What changes do you think patient/family access to the complete medical record might bring to the medical system?
4. Do you see a role for the arts in health care? Do you think it is a worthwhile expenditure of scarce resources? Why or why not?
5. Regina Holliday emphasizes the importance of the Internet and social media such as Facebook and Twitter in the creation of communities of "e-patients" that she believes will change the practice of medicine. Look up "e-patients" and visit an online patient forum for patients with a serious medical condition. What effect do you think this medical model is having on medical practice?
6. Which of the core competencies for health professions are most relevant for this case? Why?