{"id":28243,"date":"2024-06-17T14:59:11","date_gmt":"2024-06-17T14:59:11","guid":{"rendered":"https:\/\/www.writemyessays.app\/blog\/questions\/week-7-case-study-the-big-picture-a-terminally-ill-patient-in-a-fragmented-system\/"},"modified":"2024-06-17T14:59:11","modified_gmt":"2024-06-17T14:59:11","slug":"week-7-case-study-the-big-picture-a-terminally-ill-patient-in-a-fragmented-system","status":"publish","type":"questions","link":"https:\/\/www.writemyessays.app\/blog\/questions\/week-7-case-study-the-big-picture-a-terminally-ill-patient-in-a-fragmented-system\/","title":{"rendered":"Week 7 Case Study: The Big Picture: A Terminally Ill Patient in a Fragmented System"},"content":{"rendered":"

 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\u2019t 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\u2019ve seen it all already.<\/span><\/p>\n

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\u2019t 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\u2019t have a lot of continuity of records or information.<\/p>\n

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.<\/p>\n

\u201cThat\u2019s What the Doctor Said\u201d<\/strong><\/p>\n

That fall Fred often complained of fatigue, but he thought, \u201cWell, I\u2019m working so hard at this new job; that\u2019s probably it.\u201d 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.<\/p>\n

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, \u201cThat\u2019s what the doctor said.\u201d<\/p>\n

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\u2019t know what was wrong.<\/p>\n

On Friday March 13, my husband hurt so bad he was crying. I said, \u201cHoney, they\u2019re not going to be able to get you in to the office. It\u2019s too late. It\u2019s 5:00 on a Friday afternoon. Let\u2019s go to the emergency room.<\/p>\n

We can at least find out what\u2019s wrong with you.\u201d 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.<\/p>\n

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, \u201cSo Mr. Holliday, do you think maybe you are depressed?\u201d I said, \u201cOf course he\u2019s depressed! He\u2019s in pain all the time, and you don\u2019t know what\u2019s wrong with him. We\u2019re worried. I think it\u2019s his kidneys.\u201d<\/p>\n

And she said, \u201cNo, it\u2019s a protuberance of lumbar 5. Some people have this and don\u2019t need surgery, and some people do. So we\u2019ll just do some more x-rays and find out.\u201d I said, \u201cNo, we\u2019re going to do an MRI, because we need to find out what\u2019s wrong. And he is claustrophobic, so we want an open MRI and we want it this week.\u201d There was only one open MRI facility\u2014in Olney, Maryland, a tiny town outside Washington, D.C.\u2014that 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.<\/p>\n

 <\/p>\n

She said she wanted us to make an appointment with someone she knew who was an oncologist. I didn\u2019t even know what an oncologist was. I had to go online and find out. I said, \u201cHe just has a protuberance of lumbar 5. Why do we want to see a cancer doctor?\u201d<\/p>\n

She said, \u201cWe just want to make sure everything is all right.\u201d<\/p>\n

Tumors and Growths<\/strong><\/p>\n

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, \u201cWe\u2019re going to need all his pills.\u201d 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\u2019t know you weren\u2019t supposed to leave a patient by himself.<\/p>\n

A day later, on March 27, I\u2019m at work selling toys. And my boss comes to me with the phone and he says, \u201cReggie, it\u2019s your husband.\u201d I answered the phone. Fred said, \u201cReggie, I\u2019m 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\u2019t know what\u2019s going on. Can you please get here as soon as possible?\u201d<\/p>\n

I left work and I got there in 30 minutes. I talked to my husband and calmed him down and said, \u201cI\u2019m going to find out what\u2019s going on.\u201d 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.<\/p>\n

My husband\u2019s 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, \u201cWhat about his tests? What are the results?\u201d She just looked at us. She said, \u201cYou mean nobody\u2019s talked to you? Nobody\u2019s told you?\u201d We said, \u201cNo, we\u2019ve been waiting for days. No one talks to us.\u201d And she said, \u201cOh! Well, it\u2019s spread. It\u2019s everywhere. It\u2019s in his bones and in his lungs.\u201d<\/p>\n

So that night I went home and Googled what that meant. It meant my husband had stage 4 kidney cancer and he probably wasn\u2019t going to live more than a few months.<\/p>\n

Little Miss A-Type Personality<\/strong><\/p>\n

When the doctor got back to town later that week he visited my husband during 7:30 a.m. rounds. I wasn\u2019t there yet because I was taking the kids to school. He said, \u201cSo I understand your wife has been asking questions about this case.\u201d My husband was a really good patient and didn\u2019t want to make waves, and the way he asked it frightened him. He said, \u201cYes, she\u2019s been asking questions.\u201d And the doctor said, \u201cWell, if little Miss A-type personality has questions she needs to come to my office hours.\u201d<\/p>\n

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\u2019t stop talking to the nurse about a parking lot problem where one employee kept parking in the wrong space, or that Mrs. Rose\u2019s chemotherapy suite wasn\u2019t ready for that afternoon and he needed it to be ready ASAP. When he talked to me, he used words I didn\u2019t understand and he spoke very rapidly.<\/p>\n

I said, \u201cPlease, please, slow down, because I am writing everything down so I can research it later online.\u201d He said, \u201cI don\u2019t like people who research online.\u201d I said, \u201cWell, I don\u2019t have a background in medicine, so the only way I can understand you is to look these words up online.\u201d He said, \u201cThat\u2019s right. I\u2019m the one with the medical degree.\u201d It felt horrible to be treated this way. It felt like Fred and I weren\u2019t part of the care team.<\/p>\n

\u201cDon\u2019t Worry About the List\u201d<\/strong><\/p>\n

Fred\u2019s 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\u2019t happen.<\/p>\n

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, \u201cYou mean it is going to cost hundreds of dollars to get my husband\u2019s medical record?\u201d They said, \u201cWell, yeah. That\u2019s just the way it is.\u201d \u201cAnd I have to wait 21 days? He\u2019s upstairs right now!\u201d They said, \u201cThat\u2019s just the system.\u201d So I went back to my husband\u2019s room.<\/p>\n

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, \u201cWe have the list!\u201d 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?<\/p>\n

He said, \u201cDon\u2019t worry about the list. We have decided we are sending you home on a PCA pump.\u201d<\/p>\n

And that\u2019s when my husband began to cry. Because they were just sending him home to die. We had been there 3 weeks, we didn\u2019t 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, \u201cYou go after them, Regina. You try to get me care.\u201d<\/p>\n

It was a Saturday. I couldn\u2019t do anything 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 room\u2014everything to make sure we got better care.<\/p>\n

Medical Facts<\/strong><\/p>\n

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, \u201cWe can\u2019t even feed you, because you don\u2019t have dietary orders.\u201d The nurse said, \u201cYou can go down to the pizzeria and we\u2019ll pretend we didn\u2019t see you.\u201d That\u2019s how I fed my husband that night.<\/p>\n

He was in excruciating pain because he didn\u2019t 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\u2019s 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, \u201cWe want you to go back to the old hospital. We want you to get the entire medical record.\u201d<\/p>\n

\u201cHa!\u201d I said. \u201cI tried that. They won\u2019t give it to me.\u201d They said, \u201cWell, they will this time, because you\u2019re a courier.\u201d<\/p>\n

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, \u201cIf you always have this medical record with you, your husband is going to get better care.\u201d 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\u2019t have suffered as much. There were also errors that we could have corrected if we had known. The words written in the record didn\u2019t reflect what actually happened.<\/p>\n

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\u2019s 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\u2019s 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 \u00d7 6 feet of space and they said, \u201cYes, you can paint it there.\u201d It\u2019s right next to the menu in the delicatessen. And everybody, all our neighbors saw: this is what\u2019s going on.<\/p>\n

Growing the Network<\/strong><\/p>\n

All this time I used Facebook as a way to keep people up-to-date on Fred\u2019s progress. I grew this huge network of people, and they are all still my friends today. They\u2019re 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, \u201cI have to talk to e-Patient Dave! How do I talk to him?\u201d They said, \u201cYou\u2019ve got to get on Twitter.\u201d<\/p>\n

So that night with the help of my 10-year-old autistic son, I got on Twitter and sent my first tweet. It said, \u201cI want to find Christina Kraft or e-Patient Dave.\u201d The very next day e-Patient Dave found me, and by that night I was on the phone with e-Patient Dave\u2019s oncologist, a foremost authority on kidney cancer.<\/p>\n

And that man was brave. He was willing to do \u201cthe talk.\u201d 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\u2019s too late. That talk had never happened, ever, to any of us in the family. But this man from Twitter, he told me.<\/p>\n

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 of\u2014blogging.<\/p>\n

Conclusion<\/strong><\/p>\n

While these things were happening, Fred was moved to a hospice. Fred loved hospice. They took care of his pain. They didn\u2019t 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, \u201cYour husband\u2019s stable, so we need to send him home now.\u201d<\/p>\n

I said, \u201cBut we have a one-bedroom apartment. How are we going to make that work?\u201d They said, \u201cHave you considered moving?\u201d 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.<\/p>\n

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\u2019t 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, \u201cYou know, I think you should go back to hospice. This is not easy in your home.\u201d I said, \u201cWhat?! You made us move! You made me uproot our whole family!\u201d<\/p>\n

\u201cWell, that\u2019s how insurance works. You have to prove you\u2019re not able to do it and then you go back.\u201d I said, \u201cNo. This is not how it works. I swore to him, I promised him, that this would be the last move.\u201d And we stayed in our new apartment.<\/p>\n

Then on the night of June 16, Fred called out, \u201cReggie, Reggie, my catheter blew!\u201d I said, \u201cOh, it\u2019s okay, I\u2019ll clean it up.\u201d 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, \u201cYou are so good at that!\u201d She said, \u201cI was a VA (Veterans Affairs) nurse.\u201d And then she swept our floor. I said, \u201cYou don\u2019t have to sweep our floor.\u201d She said, \u201cJust go be with your husband.\u201d<\/p>\n

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\u2019t 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.<\/p>\n

Then at 6:30 he said, \u201cReggie, you look so tired. You should go to sleep.\u201d 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\u2019t 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, \u201cCome on, kids. I think it\u2019s time.\u201d We gathered around the bed. And we said, \u201cWe love you, Daddy. We love you so much. But it\u2019s okay. It\u2019s okay to go. We will miss you, but it\u2019s okay.\u201d<\/p>\n

And he stopped breathing. The hospice nurse came. She said, \u201cWould you like to help clean the body?\u201d So I held him, for the first time in weeks. He was warm. And I loved him so much.<\/p>\n

 <\/p>\n

Questions<\/strong><\/p>\n

    \n
  1. Review the instances of poor care coordination in Fred\u2019s 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?<\/li>\n
  2. What do you think are the factors that contribute to a delay in diagnosis in a case like Fred\u2019s, 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\u2019s symptoms?<\/li>\n
  3. What changes do you think patient\/family access to the complete medical record might bring to the medical system?<\/li>\n
  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?<\/li>\n
  5. Regina Holliday emphasizes the importance of the Internet and social media such as Facebook and Twitter in the creation of communities of \u201ce-patients\u201d that she believes will change the practice of medicine. Look up \u201ce-patients\u201d 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?<\/li>\n
  6. Which of the core competencies for health professions are most relevant for this case? Why?<\/li>\n<\/ol>\n","protected":false},"excerpt":{"rendered":"

     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. […]<\/p>\n","protected":false},"author":2,"featured_media":0,"comment_status":"open","ping_status":"closed","template":"","meta":[],"disciplines":[21],"paper_types":[],"tagged":[],"aioseo_notices":[],"_links":{"self":[{"href":"https:\/\/www.writemyessays.app\/blog\/wp-json\/wp\/v2\/questions\/28243"}],"collection":[{"href":"https:\/\/www.writemyessays.app\/blog\/wp-json\/wp\/v2\/questions"}],"about":[{"href":"https:\/\/www.writemyessays.app\/blog\/wp-json\/wp\/v2\/types\/questions"}],"author":[{"embeddable":true,"href":"https:\/\/www.writemyessays.app\/blog\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.writemyessays.app\/blog\/wp-json\/wp\/v2\/comments?post=28243"}],"version-history":[{"count":0,"href":"https:\/\/www.writemyessays.app\/blog\/wp-json\/wp\/v2\/questions\/28243\/revisions"}],"wp:attachment":[{"href":"https:\/\/www.writemyessays.app\/blog\/wp-json\/wp\/v2\/media?parent=28243"}],"wp:term":[{"taxonomy":"disciplines","embeddable":true,"href":"https:\/\/www.writemyessays.app\/blog\/wp-json\/wp\/v2\/disciplines?post=28243"},{"taxonomy":"paper_types","embeddable":true,"href":"https:\/\/www.writemyessays.app\/blog\/wp-json\/wp\/v2\/paper_types?post=28243"},{"taxonomy":"tagged","embeddable":true,"href":"https:\/\/www.writemyessays.app\/blog\/wp-json\/wp\/v2\/tagged?post=28243"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}