Four arrhythmias and (luckily) no funeral

May be this post is a bit long, but it will be certainly useful to define what s patient experience. We present the case of one single patient –written by him- because in a short time he had to be taken admitted 4 times in 3 different hospitals due to atrial fibrillation. Applying ethnographic analysis allows to understand very well how a patient really feels in the same situation, but with different healthcare approaches: what were his real needs, how does he elaborate meaning and how does he interpret actions taken by hospital. From this case we can learn clearly that a positive patient experience has nothing to do with customer satisfaction: it is a complete different thing as we will see at the end of the text. We apologize for the narrative’s length, put we think it is worth.

Four arrhythmias and (luckily) no funeral

By Juan García

Atrial fibrilllation
Atrial fibrilllation

The first time it happened to me I felt how my heartbeat speeded up and my pulse felt as if had been running the 100 meter race. Yet I had only climbed one floor up. This could not be right and thus I took a taxi to the closest hospital of those opened by the Madrid regional government short before the past elections. 

Entering the public hospital
My wife came with me and she had to hurry up the women at admission. They answered “what do you expect? With the cuttings we are suffering we cannot do more”. This is something I learned later, since I was feeling really sick and I had no sense of time. Then they took me to the intensive station, where quickly they diagnosed atrial fibrillation. This is a kind of arrhythmia were heart beats are produced in an uncoordinated way so that the heart rhythm becomes accelerated and speeded. An isolated event is not dangerous, but if it is not detected and treated blood clots may be formed in the heart chambers and provokes a stroke. 

The hospital applied the protocol: 24 hours with an intravenous medication. If fibrillation did not reverse, then a cardioversion should be undertaken. This means applying electrodes to reset the heartbeat. All of that was perfectly explained by the cardiologist and I was glad that he appeared so quick. 

When information is scarce
At the intensive care unit (ICU) there were many people, all of them separated only by curtains. My neighbour was a corazonpleasant mid aged gentleman, but I could hear many people suffering, especially the elderly. From time to time, a stretcher of somebody brought in by ambulance. Those people were really suffering and I felt for myself, that I did not need so much care as I was getting. After 23 hours arrhythmia reverted and could get home. During those 23 hours, all auxiliary staff and nurses treated me in a very professional but also close and human manner. Yet, medical information was scarce. Doctors explained few things and only f I asked they provided more information. In fact, the physician did not dare to order me sintrón (an anticoagulant), but suggested it could be useful and let the decision in my hands. Only when I adopted a serious attitude and asked “if I was your father” –he was a young resident- “what would you tell me”. “Of course tell you to take sintron”, he answered.

The Madrid social security gave me an appointment with the cardiologist 3 months later. Luckily enough I had a friend working also as a cardiologist, who recommended me the tests to be done, otherwise after the appointment would have to wait 3 months more for a diagnosis. The social security doctor went quickly through the test results and said only: “everything is all right”. I asked to myself “is this all. The cardiologist also gave me some general recommendations for a healthier lifestyle for the heart and after 10 minutes the consultation was over. I admit that the doctor’s short statement was exactly what I wanted to hear and therefore II made no more inquiries and left more relieved than worried. 

One and half year later I suffered the second atrial fibrillation. I knew already the symptoms. This time admission went really quick. I had only to pronounce the words “atrial fibrillation” and I was in the ICU. Again a cardiologist appeared quickly, again the same protocol, again during the long night I had to think about my poor neighbours: lonely, suffering elderly. Again all staff was very kind and helpful and again medical information was very scarce. After 24 the arrhythmia had not reverted, but the cardiologist decided to keep me at the CU for a couple of hours more instead of getting to cardioversion. I was thankful to her because I did not want to go to the surgery room. 

Another thing that had not changed at the Madrid social security was the difficulty to get an appointment with a specialist. The clerk even said: “you will have to wait one week in order to get the appointment because we cannot plan for the next quarter yet”. So I went to the primary care doctor, who told me that with these symptoms an earlier appointment was needed. He opened in the system an early appointment procedure and thus I was called to be examined … 3 months after the event! 

Thoughts about death
I experienced the first atrial fibrillation as an isolated episode, almost as an exploration of the for me unknown hospital world.  Took it as a signal not to take job issues so seriously, try to avoid stress, live healthier. My purposes did not last long and soon I found myself falling into workalcoholism and taking all kinds of problems in a very emotional way.

uciThe second episode worried me more. Although I knew there was no real danger of dying, the idea of death appeared into my mind. Not as something immediate, but as something that could happen perhaps during the next 10 years.  I did not feel afraid about the idea of going away –surely because I perceived death still as a faraway event. But felt worried for my little daughters and my wife. I tried to imagine their life without me and what they would need. On my first day after discharge I contracted a good life insurance. 

The private hospital
Only two weeks later I had again the atrial fibrillation symptoms. We were on vacation in Southern Spain, far from home. This time the episode appeared at midnight, not during the day. The next public hospital was 50 minutes by car away, but there was a well-known private hospital nearby. It belongs to an international group and has centres in several countries. Admission happened quickly. First a nurse attended me, later a doctor on call that was not a cardiologist. Right, the hospital was beautifully built, designed and decorated, but had far less resources than any big public centre.

I was not worried in the short term because there was no cardiologist, because except for the embolism risk, fibrillation is

A hospital is not a hotel
A hospital is not a hotel

not dangerous. But I felt annoyed: what would happen with serious cases? Instead I started to worry about the frequency of the events. Soon the doctor explained me that during the morning would be seen by a cardiologist and that could leave the ICU for a room. He told me that if medication did not help, an electrical cardioversion would be needed. 

I was not happy with the absence of a cardiologist, but since I could do nothing about it would at least try to sleep. I hoped there would be not many people in the room, as I was used to social security. None of this: instead I had a big and beautiful room, with nice views, a bathroom only for me (and not the ugly bottles for urine) with gel, tooth paste and tooth brush. The room had even a TV. But all of this seemed needless:  would have preferred a cardiologist on call.

The next morning the cardiologist came to see me. After some routine questions he told me not to worry, in a couple of hours I could go and left without more information. When some hours later we still knew nothing, my wife went to ask the nurses and they told her, the cardiologist was not available because he was “attending consultations in the city”. So what did I care about the life of that man. II understood that there were fixed hours for medical visits, but  remembered that in the public hospitals there was always a qualified nurse when I needed information and if she did not knew further, she asked the doctors and came back with the information. Fortunately the fibrillation reverted and we could drive home the next day. 

I was now really worried about the frequency of arrhythmia episodes. Whenever my heart started to beat a bit faster: some physical effort, a discussion… things I never was conscious about before… I stopped to see if the rhythm was normal. Only one week later, I was on a business journey, I suffered a new fibrillation. My colleagues drove me quickly in a taxi to the public hospital and admission was immediate. Cardiologists appeared quickly and after learning about my medical history they decided not to proceed with medication but apply directly cardioversion. I was not afraid because cardiogramadoctors informed me all the time why they were taking decisions and what were my organic processes. I did not perceive them as doubting, as some cardiologist in Madrid public healthcare. They were not young residents like in Madrid, but experienced 40 to 50 year old experienced physicians. And they were also not uncommitted, like the doctor at the private hospital in Southern Spain.

When they slept me I only remember to have thought that it was not disgusting and that f I died, then I wished it was like that; it did not seem to be that bad, except that you leaved behind your beloved ones. When I awoke, all this thoughts had disappeared and felt very alive, very happy to have my work colleagues with me. They had been all the time with me and were really worried. In fact they were more worried than me. 

When prescribing the treatment, doctors offered me several medication alternatives, but describing pros and contras of each one. The showed security and experience, but now they knew I was able to take decisions and become engaged in the healing process. They knew when to be firm when there was no space for doubts and they knew when to be flexible and to involve me. 

Without any doubt it was the ugliest hospital I had been, but I prefer it 1.000 times to design hospitals with uncommitted staff. 

A more positive experience with private medicine
Since the public healthcare system was so slow making appointments I decided to have a consultation with private doctors in Madrid, but of a long established hospital, with more prestige tan marketing, and with a cardiology staff that worked also for the public system. For the first time –except in Valencia- in depth information, long consultation time, questions about my situation, work, personal context and lifestyle. I do no compare with the public ICU services, but with pubic cardiology consultation in Madrid. The only thing that annoyed me is that the physician wrote in the report I had no family history, when I had clearly communicated it. It is amazing, how quick a good impression about a doctor can drop down when he gives the impression with a little detail not to have listened carefully.

Since atrial fibrillation is not severe, except for the embolism risk, really never felt in danger, the only moment of real worrypatient knowledge happened in the international private hospital. And I feel angered by the slow appointment system of the Madrid public healthcare. But n every moment I felt the professionalism and care of the public system healthcare professionals, especially in Valencia. And in both systems, public and private, got the feeling that the most engaged professionals were nurses.

Analysing healthcare experience in an ethnographical way
Although the narrative was long, f the reader has arrived here I would ask you to remain a bit more with us to analyse this story from a patient experience perspective.

1. Quick and slow
During the first part of the story, the patient deals with an unknown situation for him: entering in to intensive care. Although he seems apparently charmed, he is nervous because I do not know what happens. The quick diagnosis helps him to charm down, but his wife is angry because of the late admission. A staff blaming cuttings as a form of pressure angers her even more and is simply not acceptable.

Although conditions are not comfortable, the patient feels safe because the cardiologist appeared quickly as well as for the quick care, medication, monitoring as well as the work of nurses and auxiliary staff. The suffering of other patients helps him to relativize his situation. Comfort is not an important value when entering the ICU.

Instead, the absence of information about what an arrhythmia is, where it comes from etc. causes uncertainty, the same as the doubting answer about the resident that did not dare to order sintron. Leave a pharmacological decision to somebody who does not understand the implications is not a good idea.

The intervention was quick and correct, but the time until an appointment with the cardiologist s worrying. May be arrhythmias are not serious, but the patients suffered later 3 more with 3 times at the ICU. All of them in less than a month time. I do not discuss healthcare management issues, budgets, cuttings and the need to attend literally millions of people. I am sure the public healthcare system does as best as it cans, but often patents with severe diseases dye at the waiting list: a big failure of the system. In this case death was unlikely to be the result, but waiting without information produced uncertainty and prevents the patient from correcting lifestyle, taking medication etc.

2. Emotions
During the second fibrillation event the patient starts to think about death. The text does not say it, but I know he is over 40 and that some relatives died before him from heart problems. It is natural, that during his second stay in hospital he remembers his relatives with heart diseases, starts to believe that he will have to follow this path too and thinks about his daughters and wife. Also during his forth episode he thinks about death.

It seems as if the patient is making a balance of his life and for the first time in his life thinks that death is a real possibility. Possibly it is not necessary in arrhythmia cases, but it would be good if ICUs had the option to work with psychologist, for example in cases of stroke. Not so much because of trauma, like in accidents, but because in current culture death is banned and all this unspoken fear can be treated by a psychologist or a trained nurse.

3. A hospital is not a hotel
The patient has two experiences with private medicine. A bad one and a positive one. There is a certain tendency in private medicine to confuse hospital with hotel and not because both words are derived from the root “hospitality” but because it is very easy to generate patient satisfaction with comfort.

Comfort is all right and hopefully all hospitals had a wonderful architecture and design (see the three posts on hospitals co-designed by patients). But if attention fails ore resources are not enough, comfort and design become just a façade… it could be almost be labelled as a deception. This is the reason why the patient affirms that the only moment he felt really worried was at the first private hospital and that he changes design for competent doctors.

On the other hand, at the second private hospital design was not even perceived by the patient, he remembers the physician’s seriousness, his ability to inform, the time he took to explain the situation as well as the depth of the answers.

4. Information is the key
In fact it is the same perception as in the Valencia Hospital, where the patient had his most positive hospital experience: because of the information and security offered by physicians. This is more than logical: information gaps are filled in with assumptions.  And where there are assumptions there is uncertainty. Uncertainty is not far away from fear and in fact it is one of the main factors of anxiety.

5. The invisible engagement of nurses
The text rarely mentions nurses although they are present in many of the actions described. The patient sees always the doctor as the main actor. This is normal, because doctors appear rarely and the time they pass with the patient is short. But he is the carrier of the key information and the person from whom next steeps regarding health depend. Yet, at the end of the text (and also when comparing public and private information management) the author finds some short words to praise nurse’s work. What he values most is their commitment and engagement and he asks himself if nurses do not show greater engagement than doctors. Precisely this key role of nurses is often not visible as in fact happens during all the narrative. A highly valuable work that is socially not recognized.

A short guide to improve patient experience
The information contained in this post is wide and rich. It has enough elements of value to elaborate a short guide for a patent experience guide of excellence. But the reader is probably already tired due to this post’s length and therefore we will write about this issue in the next contribution.

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