A few months back at one of my meetings, at the Stollery Children's Hospital, the topic of access to the patients' chart came up. This is always a thorny issue for hospital folk because it can be quite contentious. Everyone talks this wonderful game about being in tune with the wishes of patient and being patient centred. Discussing the "chart" is one of those issues where patient centred care is tested.
I was informed that, by policy, in order for patients to see their chart at the Stollery Children's Hospital, they must be accompanied by a staff member. I am assuming this means a doctor or nurse. This policy makes me chuckle. I am curious who explains the chart to them (the doctors and nurses). Let me explain.
When my son, Russell, was transferred from Winnipeg to Edmonton, the ER team here in Winnipeg described him as having "seized". There term not mine. On the front page of the chart was a description of what happened in Emerg the night he was admitted and there was the comment "query seizure." Medical professionals are highly trained and very smart people. This does not mean they don't use poor terminology on occasion. The phrase "query seizure" caused us a great deal of hassle when we arrived in Edmonton. Every time a new physician came on service they would familiarize themselves with my son's chart and get a "feel" for his medical history. Of course, on the first page of his chart is "query seizure." This would immediately begin a conversation and in some cases result in neurology being brought in to consult. After a while we, the parents, clued into this silliness and explained in no uncertain terms he did not have a neurological event (seizure) in the conventional sense. The correct terminology would have been cardiogenic shock. We had to repeatedly interpret the chart for the doctors and nurses who would glance at the front page of his chart and draw the wrong conclusion.
There have been several other occasions when we had to interpret the chart for our attending physician. We realized how critical it was to be there and to advocate for our son and provide our knowledge. In our adventures in health care we have been able to prevent unnecessary testing and in some cases avoid lengthy hospital stays because we had information that was either missing from the chart of poorly recorded.
One of the biggest frustrations I have is the lack of respect we, as parents, receive about our knowledge of our health. Doctors don't like being "shown up" by mere patients. My wife and I have been exposed to some very specialized cardiac training. I love getting into technical discussions with Doctors, I get so much valuable information and it helps me be a better care provider. How specialized our knowledge was driven home on a visit to my family doctor. I began sharing about our experiences in Edmonton, discussing transplants, LVADs, ECMO, and all of the cool stuff we were exposed to. He had to stop me and he explained that he didn't have a clue what I was talking about. That shocked me. I appreciated the honesty but it opened my eyes to the fact that we were not conventional patients. The honesty that my family Doctor displayed however is not what we always encounter. If we go to a walk in clinic or to the emergency room we have to give a medical history. With my son, we typically get asked what his heart condition was prior to his transplant. First off, who cares; the old heart is gone. Why would it matter now? Then we explain what the condition he had...Left Ventricular Non Compaction. A few Doctors will know what it is or at least can take an educated guess. Others will just give you a blank stare and smile because they don't have a clue what you are talking about and they aren't going to admit they don't know. It becomes an ego thing.
As I stated before, Doctors and Nurses are smart people. They have a lot of knowledge that can be very helpful to us but it is time that the Doctors and Nurses acknowledge we have a lot of knowledge too. We are experts. Not in the traditional sense and sometimes we butcher Doctor speak a little but we do know what is going on and we definitely know when things aren't right. This is why it is appropriate to occasionally knock Doctors off their lofty perches and make them realize they don't know everything and I am totally OK with them admitting that. After all we are all human and we are supposed to be on the same team.
Tuesday, July 28, 2015
Saturday, July 18, 2015
Cardiology...the Good...the Bad...and the Ugly
It has been a while since I got "techie" about cardiology and what is going on with us. We have to keep reminding ourselves that our family is unique. It is not normal to have a 6 year old with a heart transplant and a Mom who deals with significant heart issues herself. We have many friends who are either one or the other. They are either a family dealing with a child with significant cardiac issues or a friend who is dealing with cardiac issues as an adult, but not both. Being "unique" is both a blessing and a curse.
Although we talk and post less about our health issues and how we manage, we are still very much very busy with all of our various clinic visits and endless follow ups. It has just become part of the ordinary. The new normal.
Because we see both pediatric and adult cardiology it also gives us a very unique perspective on how patients are treated in the pediatric world versus the adult world. It is a very different experience. In the future I am really NOT looking forward to being in the geriatric world as that is like being sent to the gulag as far as health care is concerned. Fortunately, that is many years away. Many...many years away.
Pediatrics, in general, has learned to be more patient centred out of necessity. Young children cannot speak and advocate for themselves and need an adult to be there for them. Actually, I should re-phrase that. Children can be effective communicators but sometimes it is just more difficult to interpret what they are saying and other times they are so clear you have to dial it down a notch. The family dynamic in peds forces doctors and nurses to be more in tune with what is going on not only with the patient but the whole family. When we are working with adult cardiology it is a completely different experience. You get half of the information and it seems far more structured. If you don't fall into specific parameters you can easily blow up "their" well conceived processes. With kids, to some extent, the staff can improvise and adapt based on the child or the family. In the adult world you must comply with the "program".
This is the challenge we have with adult cardiology. They are not flexible. Unfortunately, we break a lot of the preconceived ideas the cardiologists have about us. Susan in not in her 60's or 70's. When she was diagnosed with cardiomyopathy she was 38. Not the typical cardiac customer. She has no issues with blood pressure, retaining fluid, blocked arteries etc. If she shows up to Emergency with chest pain she is not having a heart attack. Her chest pain comes from pressure building up in the heart because her heart just can't squeeze all of the blood out. If some idiot were to give her nitro they could kill her. This throws most medical practitioners for a loop. She breaks almost all of the rules that you would assume of an adult with a heart problem.
When Susan has been admitted to hospital we try very hard (and without success) to ensure that she does not get the standard "low-salt" diet that they automatically assume she should be on. Susan does not have high blood pressure!!!!! Although a low-salt diet is healthy, the flavour, or lack thereof leaves a lot to be desired. So when the flavourless meal tray arrives, yours truly is immediately dispatched to the cafeteria, or local McDonalds, to retrieve a handful of those elusive salt packets. When I return to the cardiac ward with my pockets brimming with little white packets of salty goodness I feel like someone smuggling a file into a prison. The thought has crossed my mind to sell these little packets on the ward. Face it, salt on a cardiac ward is the equivalent of crack. Honest....I've never actually done it.
Low flavour food is a relatively small problem but is a symptom of bigger problems. I think what frustrates us most is the limited amount of information we get. We get treated like we are on a "need to know" basis and apparently we don't need to know. We are particularly sensitive to this because of Russell. His doctors share tons of info with us. In some cases possibly too much. We have been to "cardiac war" with these people and lived to tell the tale. We had one of the cardiologists from Edmonton come to one of our recent clinic visits. He was really intrigued by the fact that our son and his mother both had congenital heart defects. It is unique and i am sure the scientific mind got the better of him. We spent most of our pediatric appointment discussing the adult patient, Susan. He made the comment "so you are being seen by both pediatric and adult cardiology." It is quite shocking to think that in some ways we have gotten more information about Susan's condition from Russell's Doctors.
Don't get me wrong. Most of the cardiologists who have seen my wife have been very good and well
intentioned. They just don't know how to deal with us. We are kind of unique remember. Our last clinic visit started very strangely. Susan had just had an echo and we assumed we would be discussing the results. The Dr walked in and did the normal pleasantries. Then he asked a bizarre question. "Does anyone in your family have a heart transplant?" Susan and I started to laugh. We then explained..."why yes" "our son!" After the Dr collected himself and began to understand who he was dealing with; he dropped the topic and went on to the rest of the exam. Just a tip to any Dr reading this. Don't drop a loaded question like that on a patient and just leave it. As you could expect, at that point we were expecting bad news from the echo. The Dr shared the results and really didn't share anything earth shattering. It was a fairly normal clinic visit. It just left us wondering...why did he ask that question???
I guess the problem Susan's Drs have is that we are probably more informed than the average patient they see. We have a son with a heart transplant. I think they assume that we would be pushing for a transplant because that would solve all Susan's cardiac problems. If they talked to us they would realize that Susan knows what you have to go through to be listed for a transplant. In addition, the thought of another open heart surgery is not anything Susan has any interest in. The thought has crossed our minds many times. Why don't they just talk to us? We aren't that scary. We want to work with them but they insist at keeping us at arm's length. I don't understand that. I would think that scientists working in a health care environment would be curious about us and that we would be intriguing. We certainly are not dull. Unfortunately, there seems to be a "white coated" barrier between us and them. It is sad as I think many of these people could become better doctors if they just let their guard down and treated us like a human and not a "case." They can learn lots from their patients if they really engaged them.
Although we talk and post less about our health issues and how we manage, we are still very much very busy with all of our various clinic visits and endless follow ups. It has just become part of the ordinary. The new normal.
Because we see both pediatric and adult cardiology it also gives us a very unique perspective on how patients are treated in the pediatric world versus the adult world. It is a very different experience. In the future I am really NOT looking forward to being in the geriatric world as that is like being sent to the gulag as far as health care is concerned. Fortunately, that is many years away. Many...many years away.
Pediatrics, in general, has learned to be more patient centred out of necessity. Young children cannot speak and advocate for themselves and need an adult to be there for them. Actually, I should re-phrase that. Children can be effective communicators but sometimes it is just more difficult to interpret what they are saying and other times they are so clear you have to dial it down a notch. The family dynamic in peds forces doctors and nurses to be more in tune with what is going on not only with the patient but the whole family. When we are working with adult cardiology it is a completely different experience. You get half of the information and it seems far more structured. If you don't fall into specific parameters you can easily blow up "their" well conceived processes. With kids, to some extent, the staff can improvise and adapt based on the child or the family. In the adult world you must comply with the "program".
This is the challenge we have with adult cardiology. They are not flexible. Unfortunately, we break a lot of the preconceived ideas the cardiologists have about us. Susan in not in her 60's or 70's. When she was diagnosed with cardiomyopathy she was 38. Not the typical cardiac customer. She has no issues with blood pressure, retaining fluid, blocked arteries etc. If she shows up to Emergency with chest pain she is not having a heart attack. Her chest pain comes from pressure building up in the heart because her heart just can't squeeze all of the blood out. If some idiot were to give her nitro they could kill her. This throws most medical practitioners for a loop. She breaks almost all of the rules that you would assume of an adult with a heart problem.
When Susan has been admitted to hospital we try very hard (and without success) to ensure that she does not get the standard "low-salt" diet that they automatically assume she should be on. Susan does not have high blood pressure!!!!! Although a low-salt diet is healthy, the flavour, or lack thereof leaves a lot to be desired. So when the flavourless meal tray arrives, yours truly is immediately dispatched to the cafeteria, or local McDonalds, to retrieve a handful of those elusive salt packets. When I return to the cardiac ward with my pockets brimming with little white packets of salty goodness I feel like someone smuggling a file into a prison. The thought has crossed my mind to sell these little packets on the ward. Face it, salt on a cardiac ward is the equivalent of crack. Honest....I've never actually done it.
Low flavour food is a relatively small problem but is a symptom of bigger problems. I think what frustrates us most is the limited amount of information we get. We get treated like we are on a "need to know" basis and apparently we don't need to know. We are particularly sensitive to this because of Russell. His doctors share tons of info with us. In some cases possibly too much. We have been to "cardiac war" with these people and lived to tell the tale. We had one of the cardiologists from Edmonton come to one of our recent clinic visits. He was really intrigued by the fact that our son and his mother both had congenital heart defects. It is unique and i am sure the scientific mind got the better of him. We spent most of our pediatric appointment discussing the adult patient, Susan. He made the comment "so you are being seen by both pediatric and adult cardiology." It is quite shocking to think that in some ways we have gotten more information about Susan's condition from Russell's Doctors.
Don't get me wrong. Most of the cardiologists who have seen my wife have been very good and well
intentioned. They just don't know how to deal with us. We are kind of unique remember. Our last clinic visit started very strangely. Susan had just had an echo and we assumed we would be discussing the results. The Dr walked in and did the normal pleasantries. Then he asked a bizarre question. "Does anyone in your family have a heart transplant?" Susan and I started to laugh. We then explained..."why yes" "our son!" After the Dr collected himself and began to understand who he was dealing with; he dropped the topic and went on to the rest of the exam. Just a tip to any Dr reading this. Don't drop a loaded question like that on a patient and just leave it. As you could expect, at that point we were expecting bad news from the echo. The Dr shared the results and really didn't share anything earth shattering. It was a fairly normal clinic visit. It just left us wondering...why did he ask that question???
I guess the problem Susan's Drs have is that we are probably more informed than the average patient they see. We have a son with a heart transplant. I think they assume that we would be pushing for a transplant because that would solve all Susan's cardiac problems. If they talked to us they would realize that Susan knows what you have to go through to be listed for a transplant. In addition, the thought of another open heart surgery is not anything Susan has any interest in. The thought has crossed our minds many times. Why don't they just talk to us? We aren't that scary. We want to work with them but they insist at keeping us at arm's length. I don't understand that. I would think that scientists working in a health care environment would be curious about us and that we would be intriguing. We certainly are not dull. Unfortunately, there seems to be a "white coated" barrier between us and them. It is sad as I think many of these people could become better doctors if they just let their guard down and treated us like a human and not a "case." They can learn lots from their patients if they really engaged them.
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