Looking for a little advice …
I live in New Jersey, and my brother in Florida has been in the hospital for the past 3 days with an infection and a high temperature, 103.7 F (39.8 C) when admitted. His specialist is located at a cancer center affiliated with a major university.
There have been little things along the way, such as unprofessional behavior by the staff and poor communication, that did catch our attention. Mostly, because the only person we can speak with is the secretary for this office. All email that cannot wait 2 days for a response (through the hospital portal) to the doctor must be sent to her, and she forwards it on to him. She also then writes the response email, not the doctor, and it is typically a harshly stated phrase or 2 – never a complete sentence, greeting or salutation.
I called the specialists office to tell them that my brother had been admitted to hospital with a massive infection in his neck, with half his face doubled in size. These symptoms had us very worried that something had gone dreadfully wrong with the chemo drugs. Zometa was a big worry for my brother.
The secretary instructed me to have the hospital doctor call the specialist. The secretary explained that the specialist would not contact the hospital, and would not contact my brother because the specialist is very busy. I spent the greater part of day 1 on the phone trying to track down the hospitalist. I made many, many calls but could never reach the hospitalist – the nurses said it is next to impossible to talk to the hospitalist.
I contacted the secretary again to see if possibly the hospital may have contacted their office. I was told nobody had. The secretary then instructed me to demand that a hematologist be put on my brother's case. I spent day 2 making phone calls, to the oncology office at the hospital, to the hematology office, to the nurses station asking for a hematologist to be put on my brother's case. At each point, I was told that a family member cannot demand a specialist, and that my brother's doctor needed to put an order in for a hematologist. My brothers PCP was on vacation for 2 weeks – he was not a resource.
I decided to write a very brief email to the specialist, indicating the facts, the phone number for the nurses station, my brothers mobile phone number, etc – and sent it to the specialist – through the secretaries email. I read the return email from the secretary. All it said was: I forward email to the doctor, he said the same thing I already said to you, demand hematologist.
Meanwhile, my brother was very ill. His face had swelled to the point that he was no longer able to swallow his saliva and he was in pain. It was quite scary for his family and for him. On the heels of a multiple myeloma diagnosis, we are each a little shaken.
I did make 1 friend along the way, a nurse at the hospital, who completely sympathized with our plight. She promised to track down the hospitalist – my brother was due to have his next round of chemo in the morning and we had no idea what to do.
I had mentioned that to the secretary, and she instructed me to determine if there were oncologists at this hospital. In the end, the nurse was able to make the connection between the hospitalist and specialist with the outcome being – chemo can’t be had when an infection is ongoing. Wow. We could’ve been told that at square 1 by the secretary or the specialist. In retrospect, I don't even know why I was looking for a hematologist.
Today, the hospitalist came in to discharge my brother and said he had actually talked to the specialist. He told my brother that the specialist said he should come right over to the clinic and he would see him, with no appointment, anytime this afternoon. As soon as my brother was discharged, his phone rang, and it was the specialist’s secretary. She told my brother that the specialist had changed his mind and wouldn't see him this afternoon – actually not for 3 more weeks.
If you read this far, thank you.
Is this typical? I’m left feeling very uncomfortable. I don’t think it went very well at all. What should we have done differently? I know that this could happen again, and I never want to fail my brother in this way - again.
Forums
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greenrobin - Who do you know with myeloma?: My brother
- When were you/they diagnosed?: 12/2014
- Age at diagnosis: 54
Re: How to handle when admitted to hospital from ER
It sounds like you and your brother have been through a bit of a wringer. You seem to have fallen into one of those situations where it seems you had to do all the work to get your brother's medical team coordinated to work together, or at least it felt like it. This seems to be a burden that caregivers often find themselves in. Thankfully, you were there to help your brother, as he was clearly in no position to help himself.
I remember watching Tom Brokaw’s Dateline episode on his myeloma experience, where he talked about how you can hire a contractor to manage all that needs to get done to build a house, but there is no contractor to manage all that needs to get done with managing medical treatment, insurance, labs etc. This falls on a spouse, a relative, or a very good friend to take up this burden, and your experience is what he was talking about.
In your brother's case, I do not understand why you would have to ask or be told you would have to ask for the hospital to assign an oncologist to look at your brother’s case while he was admitted. Shouldn’t this just happen? The myeloma diagnosis is in his medical record, isn’t it? The hospital knows that your brother’s myeloma specialist cannot treat him there, don’t they?
Also, while your brother is admitted to the hospital for his neck infection, wouldn’t the hospital be responsible for his complete care while he is there, including his myeloma and whatever other problems he may have? Is your brother’s primary care physician expected to monitor your brother while he is in the hospital and request specialist when they are needed? That seems strange, he could be miles away.
In my experience, when I was in the hospital, there was a floor physician who was responsible for the patients in a given floor or wing. He came by nearly every day. If an internal medicine specialist was needed because of my kidney problems, he got one to look at me. When I needed an endocrinologist, he got one of those too. There were a number of other doctors I do not remember who saw and examined me for some reason or another as well. My primary care physician was 30 miles away and not involved with any of this, and my family was never asked to make calls or asked to contact anyone to do anything. Shouldn’t this be the way things happen? Maybe they were in your brother's case, but if it was, they did not seem to be communicating very well with you about what was going on.
I hope your brother continues to get better so you two do not have to go through something like this again. Best wishes,
Eric
I remember watching Tom Brokaw’s Dateline episode on his myeloma experience, where he talked about how you can hire a contractor to manage all that needs to get done to build a house, but there is no contractor to manage all that needs to get done with managing medical treatment, insurance, labs etc. This falls on a spouse, a relative, or a very good friend to take up this burden, and your experience is what he was talking about.
In your brother's case, I do not understand why you would have to ask or be told you would have to ask for the hospital to assign an oncologist to look at your brother’s case while he was admitted. Shouldn’t this just happen? The myeloma diagnosis is in his medical record, isn’t it? The hospital knows that your brother’s myeloma specialist cannot treat him there, don’t they?
Also, while your brother is admitted to the hospital for his neck infection, wouldn’t the hospital be responsible for his complete care while he is there, including his myeloma and whatever other problems he may have? Is your brother’s primary care physician expected to monitor your brother while he is in the hospital and request specialist when they are needed? That seems strange, he could be miles away.
In my experience, when I was in the hospital, there was a floor physician who was responsible for the patients in a given floor or wing. He came by nearly every day. If an internal medicine specialist was needed because of my kidney problems, he got one to look at me. When I needed an endocrinologist, he got one of those too. There were a number of other doctors I do not remember who saw and examined me for some reason or another as well. My primary care physician was 30 miles away and not involved with any of this, and my family was never asked to make calls or asked to contact anyone to do anything. Shouldn’t this be the way things happen? Maybe they were in your brother's case, but if it was, they did not seem to be communicating very well with you about what was going on.
I hope your brother continues to get better so you two do not have to go through something like this again. Best wishes,
Eric
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: How to handle when admitted to hospital from ER
What a disaster all the way around! I hope that your brother's condition is improving.
In the future, I would suggest that your brother never go to that hospital again. How far is there a hospital with a myeloma specialist from your brother? If it isn't too far, he should go there instead of the one he went to. I would also suggest that your brother switch oncologists. Is the one that he has been seeing a myeloma specialist? If not, he should consider switching to one. Also, your brother's PCP should have another doctor covering for him in case of emergency situations that arise while he is away.
Something that you and your brother might consider looking into if you are the only one who can manage his care, is a company that does health care navigation for people. Here in Pennsylvania, there is a company – I don't remember the name of it – that manages health care issues for people. It takes care of negotiating with insurance companies, hospitals, doctors, home health agencies, etc. It sounds like your brother might benefit from having something like that in his corner.
Another thing that you might consider doing is writing letters to the head of the hospital where he was treated, the head of the hospitalist's department, and the head of the cancer center where your brother's oncologist is, to tell them of the ordeal that you and your brother went through and are still going through to get the information and the appropriate treatment for your brother. Are you listed as the medical power of attorney for your brother? If not, get that paperwork done and make sure that it goes to the cancer center where your brother is being treated, his primary care's office, and any hospital or doctor where your brother goes for treatment. Also, when not having any luck with an oncologist's office in a cancer center, there should be a social worker or nurse navigator on staff who you can contact for help.
I hope that your brother and you never have to go through this type of ordeal again. All the best to your brother's full recovery from the infection,
Nancy in Phila
In the future, I would suggest that your brother never go to that hospital again. How far is there a hospital with a myeloma specialist from your brother? If it isn't too far, he should go there instead of the one he went to. I would also suggest that your brother switch oncologists. Is the one that he has been seeing a myeloma specialist? If not, he should consider switching to one. Also, your brother's PCP should have another doctor covering for him in case of emergency situations that arise while he is away.
Something that you and your brother might consider looking into if you are the only one who can manage his care, is a company that does health care navigation for people. Here in Pennsylvania, there is a company – I don't remember the name of it – that manages health care issues for people. It takes care of negotiating with insurance companies, hospitals, doctors, home health agencies, etc. It sounds like your brother might benefit from having something like that in his corner.
Another thing that you might consider doing is writing letters to the head of the hospital where he was treated, the head of the hospitalist's department, and the head of the cancer center where your brother's oncologist is, to tell them of the ordeal that you and your brother went through and are still going through to get the information and the appropriate treatment for your brother. Are you listed as the medical power of attorney for your brother? If not, get that paperwork done and make sure that it goes to the cancer center where your brother is being treated, his primary care's office, and any hospital or doctor where your brother goes for treatment. Also, when not having any luck with an oncologist's office in a cancer center, there should be a social worker or nurse navigator on staff who you can contact for help.
I hope that your brother and you never have to go through this type of ordeal again. All the best to your brother's full recovery from the infection,
Nancy in Phila
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: How to handle when admitted to hospital from ER
Hi Eric,
You touch on several significant topics in your reply. First, the responsibility of being a caregiver / partner. I take my role very seriously. I try to stay on the ball and to keep me and my brother leaning forward into the storm named multiple myeloma. My brother is very strong, smart, and cool. I see my role as facilitator and chief researcher. But I'm seriously mindful that, as involved as I may become, I don't own it. This is not about me when it comes to tone or tenor when interacting with his medical team (which is pretty much his oncologist and his secretary, for all intents and purposes).
So, while I would've been extraordinarily direct with this secretary had I been the patient, instead I was pretty passive. I did whatever she said – even with that tiny nagging voice in the back of my head saying ... this doesn't seem smart. When somebody treats you with scorn, the way this girl consistently does, and that person has so much power (real or perceived) – and It feels like it could be life or death in the heat of the moment, as you represent somebody else – things get weird. She gave me very clear instruction to get the hospitalist to call them, then to get a hematologist on my brother's case (2x and endorsed by the specialist). She was the quarterback, and, by golly, I was going to run the play.
Maybe there was a hematologist on his case already? Don't know. I do know that he was never seen by an ENT, oddly enough.
Second topic of how hospitals manage patient care is also noteworthy. I know my brother gave the complete list of his medications to the ER staff and identified himself as having multiple myeloma. But, I don't know what happened once he was put in a room. The first 24 hours are sketchy in his mind. I became alarmed when I called early in the morning on day 2 to talk to the night nurse, and she told me she didn't know my brother had multiple myeloma.
When I spoke with somebody in oncology at the hospital, they said that my brother's specialist's secretary should fax the chemo orders to them, and they would administer. But, they were not going to contact the specialist. It had to be the other way around.
Between a rock and a hard space!
Take away? Not really sure?
But I appreciate your retelling of the time when you were in the hospital and what all went on. Helps me immensely and perhaps you're correct that more of what was proper was going on and just not visible to me.
Thank you very much for your time and consideration.
You touch on several significant topics in your reply. First, the responsibility of being a caregiver / partner. I take my role very seriously. I try to stay on the ball and to keep me and my brother leaning forward into the storm named multiple myeloma. My brother is very strong, smart, and cool. I see my role as facilitator and chief researcher. But I'm seriously mindful that, as involved as I may become, I don't own it. This is not about me when it comes to tone or tenor when interacting with his medical team (which is pretty much his oncologist and his secretary, for all intents and purposes).
So, while I would've been extraordinarily direct with this secretary had I been the patient, instead I was pretty passive. I did whatever she said – even with that tiny nagging voice in the back of my head saying ... this doesn't seem smart. When somebody treats you with scorn, the way this girl consistently does, and that person has so much power (real or perceived) – and It feels like it could be life or death in the heat of the moment, as you represent somebody else – things get weird. She gave me very clear instruction to get the hospitalist to call them, then to get a hematologist on my brother's case (2x and endorsed by the specialist). She was the quarterback, and, by golly, I was going to run the play.
Maybe there was a hematologist on his case already? Don't know. I do know that he was never seen by an ENT, oddly enough.
Second topic of how hospitals manage patient care is also noteworthy. I know my brother gave the complete list of his medications to the ER staff and identified himself as having multiple myeloma. But, I don't know what happened once he was put in a room. The first 24 hours are sketchy in his mind. I became alarmed when I called early in the morning on day 2 to talk to the night nurse, and she told me she didn't know my brother had multiple myeloma.
When I spoke with somebody in oncology at the hospital, they said that my brother's specialist's secretary should fax the chemo orders to them, and they would administer. But, they were not going to contact the specialist. It had to be the other way around.
Between a rock and a hard space!
Take away? Not really sure?
But I appreciate your retelling of the time when you were in the hospital and what all went on. Helps me immensely and perhaps you're correct that more of what was proper was going on and just not visible to me.
Thank you very much for your time and consideration.
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greenrobin - Who do you know with myeloma?: My brother
- When were you/they diagnosed?: 12/2014
- Age at diagnosis: 54
Re: How to handle when admitted to hospital from ER
Hi Nancy,
Thank you very much for this very important list of things to do in order to be prepared. I intend to map this out so in the future it's not so crazy. I knew that infection was a real possibility and could and does happen with multiple myeloma, but until it happens, and as quickly as it did in this case, I didn't know what I didn't know. Everyone should locate the nearest hospital with a multiple myeloma doctor, if possible, and go there. When the doctor in charge or hospitalist cannot be reached, find a social worker or nurse navigator – I didn't realize these people even exist.
I have the paperwork for medical power of attorney and will do what you suggested. So important! I didn't know! I appreciate your other suggestions as well. Thank you for your time too. Because I've had the time to discuss what occurred with family, reflect on my decision making process, and incorporate Eric and your advice and info, this will never happen again.
PS: Nancy, my entire family thanks you for your confirmation of what we already knew about the behavior of this specialist. We each feel something a little different. My dad: intense anger and disbelief. My sister: scared, angry and grappling. My mom: havent given her the blow-by-blow ... too hard to see the fear in her eyes. And me: profound disappointment and disgust for the lack of common decency. It went from being a one-two punch to a knockout blow ... with the final words of the specialist, "Won't see you today after all." Thank you again, Nancy.
Thank you very much for this very important list of things to do in order to be prepared. I intend to map this out so in the future it's not so crazy. I knew that infection was a real possibility and could and does happen with multiple myeloma, but until it happens, and as quickly as it did in this case, I didn't know what I didn't know. Everyone should locate the nearest hospital with a multiple myeloma doctor, if possible, and go there. When the doctor in charge or hospitalist cannot be reached, find a social worker or nurse navigator – I didn't realize these people even exist.
I have the paperwork for medical power of attorney and will do what you suggested. So important! I didn't know! I appreciate your other suggestions as well. Thank you for your time too. Because I've had the time to discuss what occurred with family, reflect on my decision making process, and incorporate Eric and your advice and info, this will never happen again.
PS: Nancy, my entire family thanks you for your confirmation of what we already knew about the behavior of this specialist. We each feel something a little different. My dad: intense anger and disbelief. My sister: scared, angry and grappling. My mom: havent given her the blow-by-blow ... too hard to see the fear in her eyes. And me: profound disappointment and disgust for the lack of common decency. It went from being a one-two punch to a knockout blow ... with the final words of the specialist, "Won't see you today after all." Thank you again, Nancy.
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greenrobin - Who do you know with myeloma?: My brother
- When were you/they diagnosed?: 12/2014
- Age at diagnosis: 54
Re: How to handle when admitted to hospital from ER
Hi greenrobin,
I am so very sorry to hear how a difficult infection was made so much worse by the conflicting protocols. It is certainly worth investigating whether another myeloma specialist is a better 'fit' for your brother and your family.
For future reference, identify the hospital where your brother's specialist has admitting privileges. If it is not the closest hospital to your brother, plan to request – should the emergency room doctor decide admitting your brother is necessary – a transfer for your brother to the specialist's hospital. The specialist's hospital has to agree to take your brother (at least it is the way it works around here) and then a transfer can be arranged.
Also, does your specialist have an after hours phone number (probably the specialist's hospital) for your brother to use if he spikes a fever or other significant side effects while on chemo outside of business hours? If so, you may need that information, too.
I am so very sorry to hear how a difficult infection was made so much worse by the conflicting protocols. It is certainly worth investigating whether another myeloma specialist is a better 'fit' for your brother and your family.
For future reference, identify the hospital where your brother's specialist has admitting privileges. If it is not the closest hospital to your brother, plan to request – should the emergency room doctor decide admitting your brother is necessary – a transfer for your brother to the specialist's hospital. The specialist's hospital has to agree to take your brother (at least it is the way it works around here) and then a transfer can be arranged.
Also, does your specialist have an after hours phone number (probably the specialist's hospital) for your brother to use if he spikes a fever or other significant side effects while on chemo outside of business hours? If so, you may need that information, too.
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philatour - Who do you know with myeloma?: spouse
Re: How to handle when admitted to hospital from ER
greenrobin,
I read your ordeal and I'm sorry that you and your family had to endure shockingly bad service. I would echo the sentiments of everyone who has posted before, and I would definitely emphasize what Nancy said: Find another specialist, find another hospital, and write formal letters of complaint to the hospital. Find out who you should write complaint letters to, and also send a copy to the CEO of the hospital. I once had shockingly bad service from a major national telephone company and sent a copy of my complaint letter to the CEO and got a response, so your letter will get read.
I am only smoldering, so I have not had to spend any time in the hospital. However, my daughter was very ill and had repeated visits to the hospital throughout the course of her treatments for fevers, etc. Not once was I ever responsible for contacting specialists within the hospital – it was automatically done for us by the care team on call at the time. You should not have had to do any of that.
I read your ordeal and I'm sorry that you and your family had to endure shockingly bad service. I would echo the sentiments of everyone who has posted before, and I would definitely emphasize what Nancy said: Find another specialist, find another hospital, and write formal letters of complaint to the hospital. Find out who you should write complaint letters to, and also send a copy to the CEO of the hospital. I once had shockingly bad service from a major national telephone company and sent a copy of my complaint letter to the CEO and got a response, so your letter will get read.
I am only smoldering, so I have not had to spend any time in the hospital. However, my daughter was very ill and had repeated visits to the hospital throughout the course of her treatments for fevers, etc. Not once was I ever responsible for contacting specialists within the hospital – it was automatically done for us by the care team on call at the time. You should not have had to do any of that.
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FingersCrossed - Name: FingersCrossed
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Oct 2014 (Smoldering)
- Age at diagnosis: 44
Re: How to handle when admitted to hospital from ER
In a situation like this, I would call my cancer hospital and page the myeloma doctor on call and explain the situation. My cancer hospital does not have ER, but is networked with another hospital ER so any time I need to go to ER, I just go to that hospital so the records are shared.
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Anonymous
Re: How to handle when admitted to hospital from ER
Greenrobin,
I am just thankful that your brother got through this ordeal. You were in a very difficult position that, sadly, I believe is not that uncommon an occurrence for caregivers, but it should not be. I commend you on staying cool and rational through all of this and being there for you brother. And, in the end, he did get treated and through all of this.
I am by no means a pro or any kind of old salt at how a hospital should be run, but I am finding it unsettling that the night nurse did not know your brother had multiple myeloma. Am I unreasonable in thinking this? I would certainly hope that whoever was attending to your brother directly knew this. And, to the best of your knowledge, an ENT never saw your brother despite the massive infection in his head?
When I was admitted to the hospital the first time, it was because I was in kidney failure as a result of complications from myeloma. I was on a wing where everyone was a cancer patient and the staff very much knew what our conditions were and how to deal with them. The second time it was for orthostatic blood pressure, but I was still put into the wing for cancer patients.
In your brother's case, maybe his situation was such that he was not in a wing exclusively for cancer patients but in a critical care or some other wing where there is even more monitoring, which to me still makes it unexplainable that the night nurse would tell you they did not know your brother had multiple myeloma.
I would be keenly interested if any other Beacon readers out there in the health care profession feels this is an unreasonable expectation or if this is the norm. I know it is difficult for medical care providers to be critical of others in their profession at times, but maybe there are some retired ones who feel free to speak.
Like others who have commented on this thread, I do not feel it would be unreasonable for you and your brother to look at other institutions and hospitals. It sounds like you could very well find one that does things better, or at least does a better job of communicating to you what they are doing.
I am just thankful that your brother got through this ordeal. You were in a very difficult position that, sadly, I believe is not that uncommon an occurrence for caregivers, but it should not be. I commend you on staying cool and rational through all of this and being there for you brother. And, in the end, he did get treated and through all of this.
I am by no means a pro or any kind of old salt at how a hospital should be run, but I am finding it unsettling that the night nurse did not know your brother had multiple myeloma. Am I unreasonable in thinking this? I would certainly hope that whoever was attending to your brother directly knew this. And, to the best of your knowledge, an ENT never saw your brother despite the massive infection in his head?
When I was admitted to the hospital the first time, it was because I was in kidney failure as a result of complications from myeloma. I was on a wing where everyone was a cancer patient and the staff very much knew what our conditions were and how to deal with them. The second time it was for orthostatic blood pressure, but I was still put into the wing for cancer patients.
In your brother's case, maybe his situation was such that he was not in a wing exclusively for cancer patients but in a critical care or some other wing where there is even more monitoring, which to me still makes it unexplainable that the night nurse would tell you they did not know your brother had multiple myeloma.
I would be keenly interested if any other Beacon readers out there in the health care profession feels this is an unreasonable expectation or if this is the norm. I know it is difficult for medical care providers to be critical of others in their profession at times, but maybe there are some retired ones who feel free to speak.
Like others who have commented on this thread, I do not feel it would be unreasonable for you and your brother to look at other institutions and hospitals. It sounds like you could very well find one that does things better, or at least does a better job of communicating to you what they are doing.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: How to handle when admitted to hospital from ER
Eric -
In response to your question about the nursing staff not knowing that Eric's brother had multiple myeloma, that is unconscionable. When one comes on duty, it is expected that you read the chart for admitting diagnosis, other medical issues, physician's orders for treatment, and current status. I don't care where you are located in a hospital, that is policy, and it is drilled into you as a medical professional from the first day of your schooling/training.
Greenrobin -
I know that I am in a very different situation from your brother, but it can be an illustration of how well things can work. I am treated at a large cancer center in a large university research hospital. This can spell disaster, because it is so research oriented and maybe not as patient centered in the actual acute care hospital setting.
Shortly after I posted the other day, I realized that I was having shortness of breath that was significant and that I should contact my oncologist's office (I am on Revlimid and blood clots can be a side effect). My doctor's nurse practitioner responded to my email within half an hour and told me to go to the ER, and that she would call them to let them know that I was coming.
When I went, I expected to have to wait for quite a while to be taken back for assessment and possible treatment. I registered, sat down in the waiting area, and was called back to triage within a minute. From there, they took me back to the treatment area immediately. After that it, took them a few hours to do all of their evaluations and scans to find out what the problem was.
Then I was admitted. Initially I was admitted to the general medicine unit. When my oncologist learned that I had been admitted (the ER doctor had contacted the oncology residents on call that night to tell them that there was a cancer patient in the ER being admitted), he tried to have them find me a bed on the oncology unit. I was transferred to the oncology unit the next day, when a bed opened up there.
Everyone knew that I had multiple myeloma. I was admitted for extensive blood clots in all the lobes of my lungs. I can report that I'm doing much better and was discharged from the hospital yesterday. Each nurse, nursing assistant, aide, food service worker, and housekeeper who came in to my room during the days I was in the hospital stopped to spend some time talking with me. I could tell that they were doing that with each patient in my viewing and hearing area from my room.
My point with all of this is that there should be good communication between the ER and the person's primary doctor, or specialist in your brother's case. And, all of the people in contact with the person in the hospital should be aware of the admitting diagnosis and any other medical issue that is important in caring for the person.
I was fortunate on another level in that my oncologist was on hospital service last week and this week. So, he was my treating doctor while I was there. That made me feel much more secure in knowing that what the residents were doing / suggesting would be reviewed by him and modified if it was needed.
We should all expect that we receive good care and treatment from all of the medical people who we see. If we don't, we should speak up about it and make changes if things don't improve. Sometimes our doctors and nurses are so overwhelmed that they lose sight of how they are interacting with their patients. We can remind them to do better.
I know that there are times when I have an appointment with my oncologist and I have to wait a long time, sometimes a couple of hours, before I am called back to an examining room. I remind myself that he is treating people who have cancer and that some of the people that day might be having crises that require more than the allotted time for an appointment. Systems aren't designed for what really happens in a day with people who are sick in your office.
Ok, I'm stepping off of my soap box now. Have a good day everyone.
Nancy in Phila
In response to your question about the nursing staff not knowing that Eric's brother had multiple myeloma, that is unconscionable. When one comes on duty, it is expected that you read the chart for admitting diagnosis, other medical issues, physician's orders for treatment, and current status. I don't care where you are located in a hospital, that is policy, and it is drilled into you as a medical professional from the first day of your schooling/training.
Greenrobin -
I know that I am in a very different situation from your brother, but it can be an illustration of how well things can work. I am treated at a large cancer center in a large university research hospital. This can spell disaster, because it is so research oriented and maybe not as patient centered in the actual acute care hospital setting.
Shortly after I posted the other day, I realized that I was having shortness of breath that was significant and that I should contact my oncologist's office (I am on Revlimid and blood clots can be a side effect). My doctor's nurse practitioner responded to my email within half an hour and told me to go to the ER, and that she would call them to let them know that I was coming.
When I went, I expected to have to wait for quite a while to be taken back for assessment and possible treatment. I registered, sat down in the waiting area, and was called back to triage within a minute. From there, they took me back to the treatment area immediately. After that it, took them a few hours to do all of their evaluations and scans to find out what the problem was.
Then I was admitted. Initially I was admitted to the general medicine unit. When my oncologist learned that I had been admitted (the ER doctor had contacted the oncology residents on call that night to tell them that there was a cancer patient in the ER being admitted), he tried to have them find me a bed on the oncology unit. I was transferred to the oncology unit the next day, when a bed opened up there.
Everyone knew that I had multiple myeloma. I was admitted for extensive blood clots in all the lobes of my lungs. I can report that I'm doing much better and was discharged from the hospital yesterday. Each nurse, nursing assistant, aide, food service worker, and housekeeper who came in to my room during the days I was in the hospital stopped to spend some time talking with me. I could tell that they were doing that with each patient in my viewing and hearing area from my room.
My point with all of this is that there should be good communication between the ER and the person's primary doctor, or specialist in your brother's case. And, all of the people in contact with the person in the hospital should be aware of the admitting diagnosis and any other medical issue that is important in caring for the person.
I was fortunate on another level in that my oncologist was on hospital service last week and this week. So, he was my treating doctor while I was there. That made me feel much more secure in knowing that what the residents were doing / suggesting would be reviewed by him and modified if it was needed.
We should all expect that we receive good care and treatment from all of the medical people who we see. If we don't, we should speak up about it and make changes if things don't improve. Sometimes our doctors and nurses are so overwhelmed that they lose sight of how they are interacting with their patients. We can remind them to do better.
I know that there are times when I have an appointment with my oncologist and I have to wait a long time, sometimes a couple of hours, before I am called back to an examining room. I remind myself that he is treating people who have cancer and that some of the people that day might be having crises that require more than the allotted time for an appointment. Systems aren't designed for what really happens in a day with people who are sick in your office.
Ok, I'm stepping off of my soap box now. Have a good day everyone.
Nancy in Phila
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
23 posts
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