Janet Bykowski

Janet Bykowski had an extensive and varied career in nursing and research before starting at Mary Washington Hospital in 1988. She attended nursing school at Presbyterian Hospital, which is affiliated with the University of Pittsburgh. After completing nursing school and starting as an RN, she worked with Dr. Jonas Salk’s researchers in Pittsburgh in the 1960s and on HIV clinical trials with the National Institutes of Health (NIH) in the 1980s. She has been a nurse at Georgetown Hospital, Holy Cross Hospital (Silver Spring, Maryland), and for a short time she provided nursing care to Preston Marshall, owner of the Washington Redskins. She helped to develop the oncology program at Mary Washington Hospital. In 2000, she moved from oncology to pain management. She is currently the manager of pain management in the neuroscience division.

Janet Bykowski was interviewed by Kelly FitzGibbon and Jess Rigelhaupt on April 8, 2013.

In addition to the transcript below, a full transcript of this interview is available as a PDF file in the University of Mary Washington’s Digital Archive.

Discursive Table of Contents

00:00-15:00
Started at Mary Washington Hospital in 1988 in the oncology program—Expansion of the oncology program—Experiences with Dr. Jonas Salk’s researchers on the polio vaccine in the 1950s and 1960s and with NIH on the HIV virus in the 1980s—Working on clinical trials for HIV—Private rooms in new hospital—Higher acuity patients in the hospital—Pain management—First day of work at Mary Washington Hospital—Pain management—Pain Management—Medicare and Medicaid—Pain medication and different delivery methods for pain medication

15:00-30:00
Acute pain versus chronic pain—Pain medication management for addicted patients—Patient education while being treated at the hospital—Pain levels are unique to individuals—Challenges of assessing and managing pain—Emotional and spiritual pain—Palliative medicine

30:00-45:00
New hospital, its layout, and private rooms—Comparison to previous experience at teaching hospitals—Volunteer program—Working with front-line nurses and hospitalists—Staff relations—Mission statement—Community relations with hospital—Community education—Stroke program—Nursing research council—New health care technology and continuing education

45:00-01:00:00
Nursing research—American Pain Society—Education council and continuing education—MWHC’s mission—Cancer Plan Action Committee for the Commonwealth of Virginia—Drug shortages—Demerol and its side effects—Education—No plans for retirement—Teaching everyday—Finding the right drug—Health care legislation

01:00:00-01:15:00
Early nursing career—Treating George Preston Marshall—Georgetown Hospital open-heart surgery program—Working on Christmas Day, going into labor, and having her youngest child—Clinical research—Clinical research in Yemassee, South Carolina—Clinical research on HIV virus with NIH in Washington D.C.—Nursing school at Presbyterian Hospital at the University of Pittsburgh—Becoming an RN—Art and science of nursing

01:15:00-01:30:00
Technology in nursing—Working with people—Evidence-based practices—Continuing education and evidence-based practices—Patient education—Cost of health care—Cost effectiveness

01:30:00-01:39:00
Pain management from day one of a hospitalization—Palliative care—Interview concludes

Transcript

00:01
FitzGibbon:
It’s April 8, 2013, and I’m interviewing Janet Bykowski, who is the manager of the pain management division. When did you first start working at Mary Washington Hospital?

00:19
Bykowski:
I came here for a short time in 1988, which will be twenty-five years in August. When I retired from the research world prior to coming here I just felt that I didn’t want to retire “retire.” I wanted to do something, and I learned that there was an opportunity to set up a cancer program here at Mary Washington. Since I had done cancer research for many years I thought this would be a good match. When I came here and did an assessment of what they had and what we needed, it became very clear to me that we needed an institutional review board for human subjects, which was not available at that time. My hope was that with the oncologists here, and at that time we had only two, there was an opportunity to develop an oncology program. The oncology program has really grown. It was my hope that we could bring some of the large clinical trials that were available mainly in the large cities to this area so that our patients and their families would have an opportunity to participate in other clinical trials, and we were able to do that. Today we have a very robust cancer program. We have many oncologists. We have nurses and state of the art programs that I think speak very highly of the work that we do. This also enables the people from our community not to have to go north or south to participate in programs that otherwise would be required if we didn’t have the program here. When I retired from the research I had done before, I was very fortunate in my career to have worked with some very renowned researchers. Back in Pittsburgh, where I had done my original training in the late ‘50s and early ‘60s, I had the fortune of working with Dr. Jonas Salk’s researchers and the polio vaccines. I worked with patients in the iron lungs, which you don’t really see anymore. I worked on clinical trials at NIH (National Institutes of Health) and I was fortunate enough to work with those who discovered the HIV virus. [03:00] A lot of my work there was overseeing clinical trials for HIV viruses. As I said, bringing research experience into the cancer program just seemed like a good match for me. In the hospital at 2300 Fall Hill, all the patient rooms had two patients to a room. That created some challenges. Moving to the new hospital was so wonderful because we have all private rooms. This is much more of a satisfier for the patients and their families. However, it does create some challenges. I think from the nurses’ perspective, previously you could go in a room and see two patients at one time. Now you are more spread out having to see one patient in each room. I can recall that if one patient was trying to get out of bed and they weren’t supposed to on their own, the patient in the other bed would often call and say, “Mr. So and So is trying to get out of bed,” and we were there in a minute. I often wonder if there were advantages to semi-private rooms, if our fall rates were less. I don’t know if we’ve looked at that or not. Nevertheless, overall private rooms are a satisfier for the patients. Nursing as well has gone through a number of changes. We had many LPNs and RNs in the former hospital working together. We are still working together here, but now our patients on the units—patients not in the intensive care units—are much sicker today than they were before. Patients that I see now have many more complex problems than they had before. We are seeing a lot of patients with severe pain, who have chronic pain in addition to acute pain. Because the patients are sicker, we do need to know more about medications and diseases than ever before and it is requiring nurses to have bachelors of science degrees now. At the managerial level, we’re expecting nurses to have master’s and several of our nurses currently are in doctorate programs. The knowledge base for delivering evidence based care requires more than it used to. [06:00] That’s the main difference I’m seeing in nursing; the educational level that you need to be able to provide the best quality care.

06:17
FitzGibbon
Can you tell me a bit about your first day of work here? Do you remember that?

06:23
Bykowski
Compared to where I came from and what I was experiencing here, and I don’t mean this to sound arrogant, but I said, “Oh my goodness, what have I gotten myself into?” The culture was very different than what I was used to working with. That is not to say that people weren’t good at what they did. It was just the level of education of the people that I worked with prior was very different when I first came here. But we’ve come a long way.

07:11
FitzGibbon
What does an average day consist of?

07:16
Bykowski:
An average day consists of coming into work and seeing what calls I’ve had from nurses or physicians about help they might need with pain management. I came into pain management from the oncology practice in 2000. That was because pain was designated as the fifth vital sign, which made a lot of changes to how we viewed pain in a hospital setting. I can remember all my prior years of practice, pain was an expectation of a symptom you would have when you came to the hospital. We know with surgery, you’re going to have pain afterwards. A lot of diseases have a lot of pain associated with them. But the expectation was not that you always managed the pain to an acceptable level for the patient. This is complex in the sense that some patients believe that if you’re coming to the hospital you should be able to get their pain level to zero, which is an unreal expectation. Because many of these patients already have chronic pain, which means that they probably run a level of four to five at home every day—and that’s based on a range of zero to ten. Then when they are admitted here with another problem, on top of that they’re going to have acute pain. As nurses, we try to educate the patients and have a pain plan for them. What level of pain would you be satisfied with so that you could function here? [09:00] Because we know that if you have a lot of pain that you are not going to ambulate, you’re not going to cough and breathe normally. You’re not going to eat. When I’m teaching nurses I say, “If you were in a lot of pain you wouldn’t want to do a lot of those things either, so how can you expect your patient to?” As I said, up until 2000 when pain became the fifth vital sign, it was an expectation that you would have pain that we may or may not be able to control to your satisfaction. To complicate this further, nurses got very little training in pain management; physicians got very little either. Now we have this Joint Commission rule that says you will manage patient’s pain to an acceptable level. The patient’s expectations would be that you always, not sometimes, but that you always manage their pain to the best of your ability. The patient’s perception is that you did everything possible to manage their pain, and that is a real challenge for us. In order to get the pain to an acceptable level for some of our patients their respirations would be so depressed from narcotics, if that’s what we choose to use, that it wouldn’t be a safe practice. A lot of our work is teaching the patient what the pain management for them is. It’s very individualized because what works for one patient will not work for another. We have been working very hard with our patients and their family. We developed brochures and we developed all sorts of teaching aides to try to get the patients to understand that we want to manage your pain as best we can, but we also have to do it in a safe manner. That’s our biggest challenge. If we don’t manage pain effectively, always, in the patient’s family’s mind, then there will be money withheld in the payment source, Medicare and Medicaid. I imagine that the private insurance companies will follow along those lines fairly soon. How do we get this information to the nursing staff and to radiology staff and to all the people that interface with the patient? We have orientation and we do about an hour, an hour and fifteen minutes in service about pain management. We review the anatomy and physiology of pain. [12:00] We review drugs. We educate on why some pain medications work for some patients and they don’t work for others. We try to teach all the different methodologies, whether it’s by IV, whether it’s by mouth, or whether it’s by a pain pump. We look at what is the best option for that patient. We’ve also recognized that we have a need for some order sets so that when a patient is admitted from the emergency room they don’t have to wait hours to get pain meds. We have what’s called a bridge gap: “bridging the gap” orders where the nurse can give the patient something until they are seen by the physician. This brings up other changes that have occurred over the years. When I first came here, and for a number of years afterward, the patient’s private physician who knew their history, who knew their family, who knew quite a bit about the patient, was the physician who saw them in the hospital. Then came along the hospitalist program, which means we have hospitalists: these are dedicated physicians who see the patients and write the orders while in the hospital. I don’t know what percentage, but it’s a very small percentage of the patient’s private physicians who actually come to the hospital and see the patients. That’s good in some ways. That’s not so good, in my opinion, in other ways because the hospitalist, unless he’s seen the patient on previous admissions, does not have that critical piece of information on the patient and their social interactions with their families. That’s very important when you’re trying to treat a patient. That’s a big change that’s happened for us over the years.

14:10
FitzGibbon:
Can you tell me a little bit about the pain scale and a little more about how you would approach someone who is having acute pain as opposed to chronic pain?

14:23
Bykowski:
Cindy, another nurse who works with me part-time, or myself, are asked to see a patient because their pain level is not going down in spite of every order that’s available; it just doesn’t seem to be working. We go and assess the patient and often times find out when the patient was admitted that their chronic pain orders were discontinued, and that’s a pretty common practice around the country. [15:00] When patients are admitted all their orders are “dc’d,” discontinued, or medications that they took prior to admitting are stopped and then reordered if appropriate. For example, a patient might come in with bleeding and you look and see they are on aspirin, which we know thins the blood and causes bleeding. You wouldn’t necessarily want that patient to be automatically put back on aspirin. Medication review is very critical both in admitting and at discharge because you want to make sure that if a patient was on thyroid medication or heart medication and it was working for them, then you certainly would want them to be back on it and the same at discharge. You want to make sure that they are going home on the right doses and the right drugs. This is where nursing has a lot of education to do, to make sure that the patient understands that. For example, a patient might be ordered an antibiotic, but you find out that they don’t have any financial resources or insurance to get the medication. So what will happen is the pneumonia or infection will not clear and then they’ll recycle back through the emergency room again with a fever and all of that. The nurse kind of has to play social worker in the sense that we have to ask some hard questions sometimes to the patient like, “Is there any reason you won’t be able to get this drug?” Sometimes patients will be honest with you, and we all have pride, but sometimes they won’t. You want to make sure that the patient has the right drug. Back to your question. When the patient comes in and you find out they were on chronic pain medicines: if it’s acceptable for their attending physician, then they will go back on those drugs. However, if there is acute pain, say they have pancreatitis or kidney stones or something we know is very painful; or we know that they have had a total hip replacement or something of that nature, we know those procedures are very painful. We try to find the right drug that’s going to work for the patient. It might take several days to get that figured out. Some drugs cause patients to feel dizzy or light headed and you don’t want that. That’s not a safe drug to give those patients. Some patients with certain lung conditions can not have certain narcotics because they depress the respiration and that’s a problem. [18:00] You’ve got to find the right drug that’s going to work for the patient. We have patients that are addicted by choice or by chance. Some patients have doctor-hopped for a long time trying to get the medication for their pain and they’re on multiple pain drugs and then what we’re giving them here is like a drop of sand on the beach compared to what they’ve taken. Again, it’s always about safe practice. We try to find the drug that will work for them; sometimes it can be a patch, sometimes it can be an IV, sometimes it can be by mouth, and we try to find the drug that will work for that patient. We like to see more long-acting drugs because if you have acute pain it’s not going to go away in a couple of hours; probably something that’s long acting, like every twelve hours would be a good drug. With something for breakthrough pain, say every six hours. Then we look at how much drug you needed for 24 hours and go back to the drawing board and rate that again. We try to get patients off of IV drugs as soon as we can because we know if you’re going home, or when you go home, you’re not going to be on an IV pain drug. We try to convert you to an oral preparation so that when you’re ready to go we’re not trying to figure out what works for you at the last minute. We aren’t always able to safely—and we always remember safe practice—get your pain down to a five or a four, it depends. That’s our goal and we try to explain to the patient what’s happening. With our addicted patients sometimes we are able to get them into a treatment program if they want to, but it’s like any other addictive disease, alcoholism or whatever. If the patient chooses not to we can not force them into a treatment program because we know unless you really want to do this it’s not going to work. It’s a waste of everybody’s time. When I left oncology practice here in 2000 I thought that pain management would be pretty easy and I couldn’t have been more wrong. I looked forward not to be having to do one hundred plus performance appraisals every year and not having to do disciplinary processes with people with whom I’m not sure should have been in nursing in the first place. What I’ve found is that you have a lot of responsibility, but you really don’t have a lot of authority. [21:00] You recommend in this role I’m in; you recommend and you do a lot of teaching. I love the teaching part, but it’s frustrating sometimes when you can’t get the patient’s pain under control for a variety of reasons.

21:25
FitzGibbon:
What would some of those reasons be?

21:27
Bykowski:
Sometimes we cannot dose the way we would like to dose because they have poor kidney output. I wouldn’t say poor kidney output—poor kidney function with decreased urinary output. Our dialysis patients are a challenge for us. Or people with heart conditions where you have to be very careful how much medication you’re giving them. We have a number of pulmonary disease patients whose respirations are already depressed and a lot of our pain medications further depress your respiration; that’s a challenge for us. Or we have patients and their families who are scared to death that by taking pain medications they’re going to be addicted. We know the research that’s been done: if you have true pain you won’t have to worry about addiction. Addiction occurs when people don’t have true pain but their mind is telling them that they do and then there is not any real pain receptors that pain medication is working on. Therefore, it is working on other areas and that’s why people get addicted. Their mind is telling them that they have pain. Sometimes we’re not sure because pain is very subjective. Now when I was taught, and when most of the nurses were taught, it was objective. It’s what I thought your pain was. It was how you were behaving or how you looked or how you responded to my questions. I, as a nurse, would decide how much and when I would give you pain medicine. Now research has shown that it’s subjective. It’s through my pain experiences as a patient, what my pain rating is going to be and we know, and research has shown, that patients who have experienced pain for a large part of their life, their pain rating is much different than people who have not had pain. [24:00] That’s why we could never understand for a long time why you would complain of a pain level of five and the person in the next room would complain of a level of five. I would give you pain medication and you would say thank you. An hour later I would come back to see if it worked and you would say thanks it’s down to a three or a two. You give the very same medication to the person in the next room and they would say, “Nurse, my pain is a seven. It didn’t do a thing for me.” We never understood why that was, but now we do understand why that is: because pain management, pain control is very individualized. It’s based on your past pain experiences. Now we know one dab won’t do it. It’s very individualized. That’s what makes it so complex. That’s why the family history and assessment is so critical. We do know as nurses, it’s the right thing to do. The Joint Commission is really looking at this and requiring that we document, assess and reassess within the hour to see if what we gave was effective. As I share with nurses, I know that Joint Commission has an expectation but forget about that right now. It’s the important thing to do: you need to go back and reassess and provide an intervention based on what the patient says their pain is.

25:49
FitzGibbon
And when did the research come out showing—

25:55
Bykowski:
It’s been probably twenty years, but more and more the research is showing how pain memories are stored in the brain. It’s very fascinating, how they’re interpreted. There are a lot of studies going on right now looking at, for example, child abuse and things like that and how that carries over into your adult life. That’s just one example. Things like that were never studied much before.

26:31
FitzGibbon:
So someone who maybe had chronic pain over the past few years, they might say that right now it’s at a five and then someone with acute pain might also say that they are at a five and the medication you give the person with acute pain will be more effective? Is that—

26:50
Bykowski:
It can be. Another thing I forgot to mention, which we also teach, is that pain is not only physical but it’s emotional and it’s spiritual. [27:00] I know from my years of work with dying patients that often it wasn’t the physical pain, but it was the spiritual pain that people were having. That’s why hospitals now know that it’s many components of a pain team that are effective, depending on the patient. For example, patients that were dying used to tell me that they weren’t afraid of dying, but they were afraid of dying in pain and I always remembered that. I’ve heard that from more than one patient. That’s why the hospice people are so important to people that have incurable diseases or terminal illnesses, because they can work with the patient and the family to help them get to the places they need to be. We do have a number of those patients in the hospital setting now because people don’t want to die at home; some people don’t. Although that’s the preferred place, people don’t want to. We have hospice presence here and we have a hospice liaison. We also have a palliative care unit who not only work to manage pain, but address other symptoms such as nausea and vomiting. Palliative medicine is a fairly new concept. I, with some other people, created the first palliative care unit in the state of Virginia. It was started with cancer patients, but has expanded to work with end stage or incurable kidney patients or heart patients or lung patients. How this works is that patients and their families do not get a false hope that they’re going to be cured. They might be having chemo, for example if they had a lung tumor, because the chemo or radiation will reduce that tumor burden and therefore make it easier for the patient to breathe. Patients have an understanding that it’s for comfort care in the rest of their earthly life; it’s not curable care. Once people understand that, patients and their families aren’t left with a huge bill which isn’t going to make a difference. It’s the quality of their life rather than the quantity of tests and things that are performed. We have that service here as well and we do a really good job with the patients and their families. Palliative care covers pain as well.

29:57
FitzGibbon:
You mentioned that with the expansion, you went from having two people to a room to private rooms. [30:00] How has the expansion changed the atmosphere of the hospital in other ways or dynamics?

30:14
Bykowski:
I know that patients are happy to have private rooms. For the nurses, sometimes it’s a challenge because of the HIPPA laws, privacy, doors shut, curtains drawn, and everything. It takes more vigilance to get in and out of all those rooms and to see the patients than perhaps when we had two. I mentioned before you could see two patients at one time. In the layout out our facility, nurses are walking many, many miles; it’s very spread out. Look at the architecture of this hospital. To see thirty-two rooms, you start at one end and have to circle the whole hallway to get to thirty-two rooms. Geographically nurses are probably walking more than they used to. I can remember in Pittsburgh we had twenty patients in a ward, so I could see all ten or twenty at one time. That’s not going to happen today. It has brought a challenge for us. How do you manage all these patients? Of course we do not just have RNs and LPNs on our staff anymore. We really value our CNAs and other people who volunteer and help us to try to keep on top of every patient if we can.

32:02
FitzGibbon:
How does working here differ from Pittsburgh besides the size of the hospital?

32:12
Bykowski:
Where I trained was a teaching hospital and you had lots of residents and interns. In nursing, the levels of education were different. Other hospitals I had worked in the Washington Metropolitan Area were teaching hospitals as well and there were similar environments. I think is a wonderful hospital. I’ve been a patient here many times myself along with my family. When you don’t have those extra pair of hands, it’s a challenge from when you’re used to having that. [33:00] But I think for a community hospital what is different here than at the other ones, there’s community input into the hospital setting, which you don’t really see so much in the others. Especially our volunteers. We have a very viable volunteer program and that’s a big asset for us. I don’t mean to sound like this hospital was any less because it’s not a teaching environment, it’s just different.

33:48
FitzGibbon:
Who do you work with the closest with on a day-to-day basis?

33:52
Bykowski:
Probably the bedside nurses and the hospitalists trying to figure out what to do for these patients. Of course I get called often when there is a difficult family and patient, if the expectation is unrealistic. I am a nurse again and I sit down and talk to them. They can see on my lab coat that it says pain management and I feel they will listen a little more maybe. It’s not that I am any more of an expert at what I’m saying to the patient. I think they just feel “Maybe we should listen to her.” That’s my role in this and I’m all for patients being satisfied with their care.

35:01
FitzGibbon:
You said you work with a lot of the bedside nurses the most. Has that changed since you have been working in pain management?

35:09
Bykowski:
I carry a beeper 24/7 and I want people to call me if they have a question about a pump or about what to do next. I just feel very committed to that because we provide care in the safest way possible. All the pumps are complicated and we have a very close relationship with the biomedical department to make sure all our equipment is up to date and that it is calibrated and that it’s a safe practice.

35:51
FitzGibbon:
Have you seen any changes in the relationship between the nurses, the doctors, the administration, and board members since the expansion? [36:00]

36:02
Bykowski:
We are so diverse and we are pretty well spread out. We really look at quality and not quantity. And our scores for pain management, that’s just one quality indicator. It is not where we’d like it to be, but it is what it is and we are striving to improve that. It is a challenge for the patient and for us. The patient always, not sometimes, but should always feel that their pain was appropriately managed. That’s a tough hill to climb; living with it every day, that’s a very tough hill to climb. We do answer to the board and we do answer to administration and we do answer to each other. It’s a very important quality indicator, but, as I said, it’s a challenge to always meet that goal because it’s subjective. It’s not objective where I look at your wound and I say: “It’s better today. It’s less red. It doesn’t have any drainage today so it’s better.” Versus the patient saying, “my wound is not better or it is better today,” because that’s an objective finding. Pain is so subjective and it’s a challenge.

37:44
FitzGibbon:
Can you tell me about the ties that the hospital has to the community, the Fredericksburg community?

37:51
Bykowski:
Community. Our mission is to provide quality service to all the people we serve in our community. We’re very community oriented. We want this hospital to be the hospital of choice for them to come to. It’s just recently when Spotsylvania Regional Medical Center came to town that we were not the only player in town. And I don’t think we had to work so hard at making sure that we were stepping to the beat, that we were the place that people wanted to come. We have a lot of community projects: a lot of grants and things, trying to collaborate with our community, and to make sure that we are meeting the needs of the community. We’re doing more outreach at health fairs for children, for obesity in children, and outreach for psychiatric problems in the community. There are just a number of things in the community. We participate in cancer walks, heart care, and stroke care. [39:00] We do a lot of education and trying to partner with people so we can find out what their needs are. We think we know what their needs are, but it isn’t until you sit down with people in the community that you find out you overlooked some things that were very important to them. That collaboration is always ongoing and it is an expectation here. You just don’t come to work and go home, but that you participate in some sort of community projects. I think that says a lot for Mary Washington Healthcare.

39:45
FitzGibbon:
You mentioned some of the research that’s helped improve patient care. Can you tell me a little more about other medical advances that have helped improve patient care, either in the oncology department or pain management?

40:02
Bykowski:
The stroke program. We’ve dedicated units now to specific diseases. I think that has contributed a lot to providing quality care because those nurses and staff are trained for those particular conditions. We have the stroke unit upstairs, which has received national recognition; that is wonderful. We have heart programs that have received national recognition. We have other areas that try to do state of the art care through evidence based practice. We have a nursing research council now. We encourage nurses to do research on something they have identified and are thinking, “Maybe we could do this better.” For example, for a long time patients had Foley catheters in. It was really more convenient for the patient and the nurse than not having a Foley catheter. Without a catheter, it means the patient has to get up to go to the bathroom more. Depending on the state of the patient, it is more of a challenge for the patient and the nurse as well because the patient sometimes can be incontinent. But we know now research has shown that a Foley catheter— anytime you have a catheter in it’s a potential for infection. We are trying to make sure that our catheters don’t stay in our patients very long. Another thing that we’re trying to do is make sure IVs don’t stay in the patient any longer than they have to. When you can take something by mouth and can tolerate something by mouth, then why would you have to have an IV in, for example? [42:00] We didn’t really look at that in that way before, but we do now. There’s been nursing research done in the intensive care unit to see if there is skin breakdown when patients have an endotracheal tube. It was often just positioned on one side and now they know rotating the endotracheal tube to different sides of the mouth has been beneficial. There’s nursing research studies that have proven, through evidence based practice, there is a better way to do this. From the pain perspective, we know that there are implantable pain pumps for patients now if they need them. That wasn’t available years ago. We also know for pain management there are IV drugs that are very effective. There is something called, for surgical patients—I’m trying to think of the name, “Q pump” is it? It’s a ball pump but that puts medication right into the operative area so it’s numbing nerves that have been cut. It’s localized and doesn’t have to have a lot of pain medicine by mouth that may make them very unstable on their feet. We are trying to keep up with the latest and the greatest and our patients really appreciate that. When I go to pain conferences, I see we are at the top of our scale compared to large institutions. I feel very good about that. Are other places having difficulty and challenges in pain management? In fact the inner cities are having more of a problem probably then we are because there’s more addiction in that area. When I talk to my peers in New York, D.C., or in Baltimore, they have a different set of challenges then we have here. We have the Moss Clinic so that if our patients can’t afford follow up care, they can go to the Moss Free Clinic. That is another great community resource for our patients in Fredericksburg and the surrounding counties.

44:51
FitzGibbon:
How do the nurses balance research and also taking care of the patients? [45:00] Is there a specific time that they have set aside during the week to participate in research?

45:10
Bykowski:
We’re hoping to get dedicated time for research. Presently if a nurse identifies an area she or he thinks would benefit from going to the appropriate resources—that’s not Googling something on the internet for example. It is going to PubMed or some of our nursing research sources and finding out that, “this place did this and these were their outcomes.” Then we might collaborate with them. We can do another research project based on what they have done to see if it comes out the same or different for us. I tell the nurses all the time, “You don’t have to reinvent the wheel all the time, but you can really build on someone else’s research and outcomes.” I think we’re thinking about it more. Rather than, “I know we can do this differently but I don’t know what to do about it,” now there is nursing research team. The nurses can say, “I’d like to bring this to the research team to see what you think.” And of course we say, “Okay if you think you might like to publish this in the future then it must go through the IRB.” We want them to go through the right process to start with so that they’re not finished and then saying, “I want to publish this.” If you didn’t go through the IRB and get the informed consent, then you can’t publish it. It’s a learning curve. As more and more nurses do evidence based research I think they find it exciting and meaningful. I think people then want to do it for the right reasons; not because I’m in graduate school and I need to do a paper, but because I think it’s the right way to go.

47:28
FitzGibbon:
You mentioned that you go to conferences sometimes, like pain conferences. How else do you continue to learn on the job? You said conferences so obviously—

47:41
Bykowski:
I do a lot of conference calls and I think everybody’s budgets—there is not a lot of budgeted money to go to conferences. There are other ways to learn through your peers. [48:00] The American Pain Society, which we belong to, has a lot of online information you can get and we encourage people to continue their education whether formally or informally. Then we can discuss that too; somebody saying “I read a good article” or “let me tell you about this.” Through our shared base and shared governance, we have different councils. Through the EDC, or education council, someone can call up that chairman and say, “I’d like to present something I read.” They will come and present and get people enthused about it. We have a process in place where you can share what you have learned.

49:01
FitzGibbon:
For nurses is there any portion of that that’s online, where every so often you have to get re-certified?

49:13
Bykowski:
We don’t have that presently. We do have mandatory education that you must do every year. We have CE Direct, which is resource for nurses and that’s evidence based. That’s acceptable by the American Nurses Association as a valid, reputable place to go and learn.

49:46
FitzGibbon:
You mentioned the hospital’s mission in the community. Can you tell me some more about their core values? The hospital’s core values?

49:58
Bykowski:
Everything that we’re asked to do or expected to do is based on the mission to serve all people within the community. Whether it’s volunteering or it’s reaching out to people that need help. The mission and the vision is to provide quality care to all patients that we serve regardless of race or ability to pay or any of that. The mission and the goals are to provide the highest quality care that’s possible.

50:48
FitzGibbon:
How does Mary Washington Hospital support you as a nurse, as the Manager of the Management department?

50:58
Bykowski:
I’ve been blessed. [51:00] Anything that I’ve ever wanted to do that was reasonable— I think that most of my requests have always been reasonable—I have been very much supported. I participated at NIH and did some research projects up there and I was supported with that. I chaired a committee of the Cancer Plan Action Committee (CPAC). It looked at all of this various areas of the state of Virginia for the governor to see which ones were underserved for both pain and cancer. I’ve traveled all over the state. I never had trouble getting off to go to the meetings, which were in Richmond. I just feel that I’ve been very much supported here in all that I try to do.

52:01
FitzGibbon:
How do you keep up with pharmaceutical advances?

52:08
Bykowski:
We have a very dedicated department of pharmacy here and I look to them to keep up with the pharmacy. Recently we’ve had some drug shortages—and just on the narcotics and that was really a challenge—but they were able to substitute drugs that were comparable. I feel like that’s out of my realm, but we have a lot of pharmacy PhDs and they keep on top of everything. It’s a very tight collaboration with pharmacy and nursing.

52:52
FitzGibbon:
Have you noticed a big change in drugs that have been recommended maybe twenty years ago as opposed to what you’re using now?

53:02
Bykowski:
Yes, one comes to mind. It’s called Demerol (Meperidine). That was the drug of choice for pain. Let me tell you that’s what I was taught. That’s what the doctors were taught. Then we realized that Meperidine—it’s used for one or two conditions in an ICU setting or in an ER setting—but Meperidine or Demerol can cause seizures. It has a metabolite called Normeperidine which is not broken down by the liver. It keeps circulating. It’s really called a “bad drug.” About fifteen years ago I took an initiative to get it out of our ER, and to not have it on our formulary for physicians to prescribe for that very reason. [54:00] There were many challenges related to that. I’ve thought my tires were going to be slashed. It just wasn’t a good drug. I had to do the best I could to educate the doctors about why it was not a good drug. Here again, it wasn’t my idea, but showing the research. I can say as of today we don’t order Demerol. And if somebody does order it, my beeper’s going off within five minutes because they want me to get out the stick and say, “No you can’t order this.” That’s an example of when we found out that a drug wasn’t good and we took it off the formulary. Patients aren’t subjected to that. But again, we were all taught that Demerol was a great drug and practically everybody that had surgery got ordered Demerol and Phenergan. We don’t use that anymore.

55:07
FitzGibbon:
How did you go about educating the doctors and nurses?

55:10
Bykowski:
I went to their staff meetings. The division chiefs discussed this at staff meetings. Then I monitored it for probably for three years. The pharmacy provided me with how many doses were ordered and which physicians were ordering it. I would just pay them a visit, a kind visit, and say you know here’s the research. I would put the information in their mailbox saying we shouldn’t be ordering this and this is why. When you’re trying to change practice, you don’t want to come off as miss know-it-all. But you have to give people an understanding of why it’s not a good way to go. I think over the years I’ve earned the respect of the physicians for the most part. If I’m suggesting something, it’s for a good reason. It’s not because I think I know everything about everything because I don’t. Actually, the more I learn I realize how little I know.

56:24
FitzGibbon:
Is there anything else that you specifically wanted to talk about?

56:31
Bykowski:
No. I’ve been practicing for fifty-three years and I don’t know how many more years I’ll continue to practice. As long as my brain still works. I love teaching people and I like working with the patients and making them feel better. I just hope that when I’m not effective anymore someone will tap me on the shoulder and gently say, “The front door might be the best exit for you.” Until that time I hope I can still be helping people. [57:00]

57:06
FitzGibbon:
How often do you teach?

57:08
Bykowski:
Everyday. The patients or whoever I’m coming in contact with; everyday there is somebody I try to help. For example, I work with the aides. If I see that a patient has been sitting out in the bedside chair for two or three hours and they are saying “nurse my leg hurts so bad”—well sure, they’ve been sitting with their legs down for a long period of time. Then I’ll go find the aide or another nurse and say we need to get this person back to bed because they are uncomfortable. Again it’s not just always medications; it’s change of position. Sometimes people are complaining of pain, but if I can get their mind on something else the pain sometimes goes down. When patients sit there and that is all they’re thinking about, it’s not working. Diversion is a very great tool. I’m not saying they don’t have pain, but anxiety can be part of it too. I forgot to mention that many patients with severe pain have a lot of anxiety. Sometimes some anti-anxiety medication would bring their pain down. If it does, then I know that’s the problem. Anti-anxiety medication works. Sometimes I say to the nurses—I don’t sometimes, often I say it—that patient seems very uptight to me. I would suggest calling the doctor, getting some Xanax—I call it “chill pill” medicine—see how that works, and let me know. Most of the time it works. It’s not that I’m a miracle worker. It is just finding the right drug for the right occasion.

59:00
FitzGibbon:
Have you seen any changes that have been a result of either health care legislation that’s been passed or hospital policy changes?

59:09
Bykowski:
The health care change that I am concerned about right now is this insurance for all. I am not sure how that’s going to affect everyone. For example, if those people that are uninsured now get insurance, does that mean they are going to be able to purchase their medications? I think there is this misconception that if people have insurance they are going to be able to get medications and they may or may not. It will be interesting to see how this whole thing plays out. I think the Medicare reimbursement piece is really impacting the hospital reimbursement because some of it, frankly, is unrealistic. [01:00:00] But as a hospital you’re required to do what’s legislated and you do the best you can. Anything else?

01:00:25
Rigelhaupt:
If it’s okay I’m going to ask a few follow-up questions?

01:00:30
Bykowski:
Sure.

01:00:32 – Rigelhaupt:
The first one, you said you have been working for fifty-three years.

01:00:37
Bykowski:
Yes.

01:00:38
Rigelhaupt:
Could you just give, or try to—I know with fifty-three years is a lot—but a play-by-play of your career? Where you first started and then progressed to Mary Washington.

01:00:50
Bykowski:
When I graduated from nursing school in the late ‘50s I was asked to be what was called the head nurse then on a sixty-bed brain and trauma unit. That would never happen today. You would need experience today to be a head nurse. But I had trained in that hospital and I guess they felt that I might know what I am doing and be able to do it. Then, I remember, I saw practices that I did not like. Because I was so young and because many of the nurses were much older than I was, how would I go about telling them that they needed to change their practice? Instead of saying anything I allowed that to happen probably because I wanted them to like me. We still do it somewhat, but not like to the extent we did then. Now we don’t take a good nurse—I must have been considered a “good nurse” or an “effective nurse”—and put her into a management role without one bit of training. Think about that, okay, but that is what happened. You sank or you swam, right? Then I married a fellow that was moving to Washington D.C. and so that’s how I ended up in Washington, D.C. I had some interesting experiences there. I joined a nursing agency, the United States Employment Service Registry. At the time I didn’t realize it but you were sort of selected to be in that registry. I was working some at George Washington in some kidney work. [01:03:00] I got a call that I needed to do some private duty. They said it was to take care of a gentleman who was very difficult to manage and that they thought I might be able to do that. It happened to be George Preston Marshall, who owned the Washington Redskins. He was in Georgetown Hospital giving everyone a fit. I took the challenge and he listened to me even though I was of small stature. I was very strict and stern with him. Because of who he was I think he thought he did not have to comply with the rules of taking his medicine. He referred to me as the “rear admiral,” but I didn’t really care what he called me. We only had one car then and we were living on MacArthur Boulevard down by the canal and I was pregnant with my first child. This man came every night to pick me up at eleven o’clock, and it was Jack Kent Cooke. He came and got me. Later he said to me, “I can’t have you quit. I will come and get you every night and take you home.” Only years later did I recognize who Jack Kent Cooke was. When Mr. Marshall died they gave me two tickets on the fifty yard line for the Redskins. The reason that came to be was that I had worked for the physician of the Pittsburgh Pirates and the Steelers. That was probably the smelliest job I ever had in my whole life. That is probably because when you’re down in the dugout in that place or whatever, you don’t really get to see the games or anything. You just hear those guys complaining all the time when they got hurt or when they were taken out of play. But this was long before they had lots of trainers and things. My job was wrapping ankles and shoulders, or treating cuts, or giving oxygen to people who had gotten knocked out, or things like that. So that was an interesting experience and I met a lot of nice people that I kept in contact with for a long time. I was at Georgetown and they had an open heart surgery program. [01:06:00] They said, “Didn’t you have a little bit of open heart surgery when you were in Pittsburgh?” And I said, “Yes, but it was not a lot.” They said, “We want you to scrub in because we need a scrub in nurse.” Those were twelve to fourteen hour days. That’s when they were doing the ball valve and most all my patients died. I couldn’t figure out why they died. Later I realized later that the only patients that they were probably allowed to do the ball valve on was the ones that weren’t probably going to make it anyway; it was experimental, but that was a depressing kind of thing. We weren’t allowed to drink much because you were scrubbed in for six hours at a time on your feet; you weren’t allowed to leave to go to the bathroom so you didn’t drink. It was a rough job. The resident and I handled all the blood gases at the time. I stayed at Georgetown and did other kinds of work there. Then I went to Holy Cross in the spring of 1964 to open up what they called an ICU unit. How it came to be was they knocked a wall down between two rooms and that was the ICU; and we had five patients. We had to go to the basement at night and bring up these oxygen tanks, these huge cylinders. We had to lug them up. We didn’t have orderlies or people to help you. Then the oxygen was in tents that we had to wrap around the mattresses. We never thought about if patients were claustrophobic or not. If you needed oxygen you just went in a tent. There was no question, we had suction bottles and it was very close quarters. I remember I was always black and blue from hitting my hips on something because there just wasn’t enough room to move. I kept working there and then it was near Christmas. They said, “We’ve had so many callouts. Can you come in and just pass meds on one of the units?” No lifting at all because my youngest child was due New Year’s Eve. I went in Christmas Day to pass meds and my water broke. I delivered her Christmas Day. She has never forgiven me for that now because she said, “Mom, you always wrap half my Christmas presents in birthday paper.” That’s probably true. She really attributes it to me going in and passing meds Christmas Day. But like I said, I’ve always been patient oriented and they really needed help, so I went in to do that. I worked at Holy Cross on and off for a number of years and then I decided I would do clinical research. [01:09:00] That’s when I worked for NIH and on a contract overseeing an outpatient laboratory. To review research, I traveled to many states to make sure that they had facilities to do clinical trials. I learned from a lot of people there. Then I went to Yemassee, South Carolina to work with monkeys. There were monkeys on this island and they were studying behavioral issues of monkeys. I remember I was advised not to set my purse down and I did. The next thing I knew a monkey had grabbed it and gone up this tree and shook everything out including my money and my credit cards. I thought, “What did I get myself into?” Then these monkeys got sick and had diarrhea. The two vets that were there said we have to gavage all these patients. I had never gavaged an animal in my life and they said it’s just like humans. You measure the monkey’s nose to his ear and to his stomach. I asked, “Will I be bitten?” They said, “No, we will sedate them.” Over a week’s period, I probably ran IVs and gavaged monkeys. Hundreds, maybe, of animals were sick and required stool cultures. It was just like humans. That was an interesting time in my career. I worked on the human warfare chemicals project at Fort Detrick; maybe you’ve heard about that? My role was to monitor our employees. That was a little scary, but I guess I was young and naïve. I never thought that I could be affected by the chemicals because we did not have all the protective gear that people have now. Then there was the HIV project. I never had a fear about that. I drew blood. Later, I had oversight of a lab and I drew blood. I often drove to Washington D.C. I remembered going there with hundred dollar bills in my pocket because I would go into the drug community. I went to DuPont Circle and paid people to collect samples. We collected tears and things and brought them back to the lab to see how the HIV virus was transmitted. Remember people thought it was tears and then they thought it was transmitted through saliva? I was doing all these swabs and that was kind of interesting. Then when it was discovered there were different HIV viruses—you know one, two whatever, about that time. [01:12:00] That is when this was coming to an end and I said, “Well okay, I’m going to hang this up.” And that’s when I moved to the country in Spotsylvania for a peaceful life thinking I was only going to come here for six months to a year. Twenty-five years later I’m still here. Always challenges—I seem to get into jobs that have challenges. I guess I like that.

01:12:36
Rigelhaupt:
You started there with your first nursing job. Where did you go to school?

01:12:42
Bykowski:
Presbyterian Hospital at the University of Pittsburgh.

01:12:52
Rigelhaupt:
And that was to become an RN?

01:12:54
Bykowski:
Yes, to become an RN. Then I was fascinated, probably through Dr. Salk and the Polio vaccine, about research. Up until that time I hadn’t thought about it and then I kept going into jobs or finding jobs or just falling into jobs that had some research, just like the first ball valve heart with those patients. How did I end up with that and then trying to follow that along? I did have the opportunity to go back to Pittsburgh when they did the multiple organ transplants. And having had a bone marrow transplant three years ago myself for bone marrow cancer here again I was in the research end of it as well. It’s either I’m part of the research or I’m a recipient of the research; so it’s served me well.

01:14:10
Rigelhaupt:
One of the things I’ve heard in listening is that medicine is an art and not just a science in terms of practicing with other nurses, working with other nurses and physicians. How would you describe the process of implementing evidence based medicine? Is that something that you found?

01:14:34
Bykowski:
I’m glad you mentioned that. I have been telling my colleagues that for a long time. I feel very strongly that nursing is losing its art. I really get a standoff-ish look sometimes. But I said here is what I have observed over time: nursing has become less of an art, not that we wanted it that way. [01:15:00] Nursing has become less of an art and more of technology. We depend now so much on technology that I feel that we are looking more into the computer, the eyes of the computer or the face of the computer, than we are into the patient and their eyes. I think about where we were before when we had more time and we weren’t being pushed. We didn’t have to worry about patient/nurse ratio. You didn’t have to worry so much about the bottom line. Medicine is so very much a business and to stay viable you have to make sure that you’ve got the business component of it as well as the practice component. I don’t remember as much as I have in the past ten to fifteen years of having to worry so much or be concerned so much about the business part of it, in addition to the nursing part. You can’t keep doing things the same way and get a different outcome. We know that. Everything is data driven and so the nurses are having to put in the computer so much and assessment takes so much longer to do. The reports take so much longer to do. The nurse doesn’t have the time to sit and hold a patient’s hand and look in their eye and talk to them for a long period of time because you’ll get so far behind. Our patients will tell us the nurses are just flying in and out of the room, literally we are. We had a discussion the other day here, is empathy, for example, something that you can teach or is it something a person has? What about this empathy thing? Because you have to have a sense or be able to feel another person’s feelings or how they’re feeling about something before you can figure out what you’re interaction needs to be and we’re finding that many nurses don’t seem to have empathy, patience, understanding. They’re just not there. I don’t know if this is a generational thing: where by the kids today, the teenagers today, these people, they really don’t write letters anymore, everything is texting, everything is computer, everything’s so that you don’t have that one-to-one physical interaction anymore. [01:18:00] Are we developing a generation that is not going to understand this or know the body clues of what someone is feeling or saying? I don’t know but it’s such a good question because it has been on my mind for a very long time. How do we bridge this gap between nursing as an art, medicine as an art, versus nursing as a business? And you have to combine them to be successful, but it’s a real challenge. Did that answer your question? That’s the other thing: I always try to be a role model about this and people have said, “you can get more things out of people then anybody ever knows.” Sometimes they tell me too much, but I think you have to develop a common bond between people before they’re going to tell you the truth about how they really feel. And people can tell if you are faking it or if you are sincere about what you’re doing. Back to nursing as an art: I hope we’re able to turn it around, but it is a business world. Medicine is a business. As nurse managers I don’t recall that we ever had hours per workload index and all these other things that you look at. What’s our line item for this and line item for that? And you can’t go to conferences this year for example because we have this and this and this to do. I’m not saying one’s right and one’s wrong. It’s just a sad fact for me that—I’m just comparing my fifty-three years of practice and nursing as an art is a real challenge. I think Florence Nightingale would just have a heart attack if she could see some of the things we have to do today.

01:20:16
Rigelhaupt:
And yet you, as you said, you’re a clear proponent of evidence based medicine. Does that contribute, in your opinion, to being more data driven, more science driven and play any role in perhaps pulling away some from the art in medicine?

01:20:37
Bykowski:
It is. I think a lot of times—I don’t think, I know—a lot of times I had no idea why were doing them except that is just what we were taught. For example, we were taught that you cover surgical wounds. You made sure you had many layers of gauze on them and you would tape them down really tight. [01:21:00] Compare my years of surgical nursing to what now? That is wrong because we know that is a dark moist environment and it just creates an area for bacteria to grow. We know that’s wrong now, but we just did it before because whoever taught me said that’s what you do. Now the research has shown that you don’t want a dark moist environment for bacteria to grow. So what do we do now? We either leave it open or you have dressings on it that the air can get in; it’s permeable dressing so that air gets in. That is an example. Or we used to put Foley catheters in and leave them in until people go home because that’s what we did. But then when people went home and the catheter came out, guess what? They couldn’t urinate because the bladder got lazy and it didn’t have to think about that. Those are just examples. Yes, you have to keep up. You have to make sure that your practice is evidence-based, where we didn’t have that before. It’s trade-offs and what I say is that you have to have all of it altogether and package it so that you’re doing the best practice, but at the same time it’s cost effective, what you’re doing. That is a huge challenge today because we have many patients who are non-compliant. You can teach and preach until the cow comes home. They go right back out the doors. There are lung patients, and the first thing you see them do before they get in their car is lighting up their cigarette. And you would just like to go beat them on the head, but they are addicted and addiction is addiction. What are you going to do? I mean that’s the frustration part. Or you see diabetics and you’ve taught them what to eat and how to take their insulin. You got their blood sugar down to an acceptable level before they leave. I saw a gentleman downtown that we all had worked with and he was having a hot fudge sundae a big plate of potato chips and fries and a Big Mac and everything else. What do you do? That’s the frustrating part. When you work and work and try to get people on the right track, but they go out this door. And the gentleman smoking, he’ll be back in through the ER panting and having difficulty breathing. We’ll go through that again and he’ll go out the door and be back in again. I think that’s frustrating. But like someone told me: you can’t fix the world; you can just fix part of it. [01:24:00]

01:24:03
Rigelhaupt:
You mentioned the business part of it, that’s part of working in a hospital. Can you think of some examples in which the hospital administration has asked nurses or physicians to be business conscious? That’s probably not a great phrase—but times when they have asked the medical staff to be more cognizant of the cost?

01:24:30
Bykowski:
Yes. Some of these drugs, for example, are very, very expensive. Some of them an insurance company will not cover at all or cover marginally. Just because it’s available and you read the ads and this sounds like the best piece of apple pie coming down the pipe for this group of patients, it’s really not cost-effective to do that. Some of the other medications, for example, do just the same and they’re just as effective and they’re cost-effective. You know the drug companies have been really told to quit wining and dining the nurses and doctors because I’m sure that we used to provide supplies and stents and things to people when we didn’t even know the cost; somebody came and said this is the right thing to do. In that part I think it’s a good thing that there is oversight of the manufacturers of some of these devices. Looking at devices, I know the doctors have been cautioned about this is. There’s a wide range of costs for hip replacement prosthetics. I was part of a group here looking at these replacements. Some of them and they were terribly overpriced. And then looking who are these patients that they are going into. Why would you put a real expensive device in a patient that came from a nursing home who doesn’t walk? They fell and broke their hip and you’re putting this in. [01:27:00] That person doesn’t need a high-end device. It’s part of being cautious and conscientious of the cost. Do you need that cost for this particular application? Does that make sense? From a nursing perspective, I know overtime is very costly. Why ask Suzy who has already worked forty hours a week? Because Suzy always says yes. Why would you ask Suzy to work Saturday when we’ve had a callout and every minute of Saturday’s shift for her will be time and a half—and if it’s a holiday will be double that. Whereas it would be more cost-effective to take the time to call your PRN staff, or part-time staff, and say could you fill in? Before, when I was nurse manager, we didn’t think about that so much. When you did your expense account for the month you just said callout and filled it in; you weren’t looking at the cost factor. That’s an example of trying to be more prudent about scheduling. Maybe when you have patients coming in that does not have any insurance; you try to get them in and out. You do not give them a different level of care or practice, but you are more prudent about getting them in, getting them started, and getting them home because every hour of nursing time will not be reimbursed. When they come in: try to get their orders, get them started, and get their plan of care such that you can get them out in a timely manner. I’m looking at length of stay right now for patients. Is their stay prolonged because many of the insurance companies pay by DRG—meaning if you have pneumonia we’re only paying you for three days, too bad. If you couldn’t get that patient squared away in three days and now they’re here five or six days, the hospital is eating the rest of those days. I’m looking at were patients here longer for this condition than they should have been because their pain wasn’t managed. I’m focusing on pain. Or my co-worker is looking at diabetes. Was that patient’s length of stay longer because we didn’t get their blood sugar managed in a timely manner? [01:30:00] We’re looking at days versus what happened and we’ll try to look from that to see what happened. I’m saying we should try to get the pain managed from day one because, remember I said, people aren’t going to want to turn, cough, deep breathe when they are in pain. We try to get their pain managed on day one, rather than waiting until day four or five, or three or four. I get the call saying, “You know, they are still at a pain level of six or seven. What should I do?” Please let me know in the first twenty-four hours so we can get on it right away. Those are examples. We are just more conscious that it is costing us money if we don’t do this right. Does that make sense?

01:30:51
Rigelhaupt:
So the last question I had in listening, if you could say a little bit more about the palliative care program you started. When you started it, why you started it and you said you worked with other people. If you could say their names—

01:31:08
Bykowski:
That’s a published story as well. It came from a presentation in Key West in 1999, I think it was. It was in the national Journal of Hospice and Palliative Care Organization. I was asked to be on their editorial board, which I still am on. I peer review articles related to palliative and hospice practices and I enjoy that a lot even though I’m not in that practice now. The reason I got interested in that was one event that really triggered my thinking. It was when an eighty-nine- year-old lady who had cancer of the colon. She was ordered enemas and GI prep until clear because she was scheduled to go down for a scope of her GI tract. The nurse called me because I was still manager of the oncology unit and said, “She’s crying. I don’t really think she can take anymore of this because she’s throwing it back up and I can’t see giving her enemas until clear to get her ready for this. She’s an eighty-nine-year-old patient.” I said, “I’ll take care of it.” I called the physician. He and I had a very heated disagreement about this. My question was how is this going to change the outcome of her disease? You’re not going to operate on her. I said, “Are you going to operate on her?” And he said “No.” [01:33:00] I said, “Well then what’s the purpose of the enemas of this GI cleanout of this lady”? He said, “I want to see if the tumors, her cancerous polyps have increased.” I said, “Doctor, in all due respect for you, you’re not going to do anything with the report so I can’t see subjecting her to this. I’d like you to think about it until tomorrow, but I’ve advised my staff not to continue with the process because she’s very uncomfortable and actually we’re making her worse. She’s bleeding from the rectum.” This stuck with me and I thought, there is something about this that isn’t right. Because we can do it doesn’t mean we have to do it. I spoke to the other oncologist that came in that morning and he said, “Bykowski you seem very upset.” I said, “I am and I don’t know what to do about this.” He said, “What do you think we should do”? And I said, “I don’t think we should be doing chemo until these people take their last breath because they have these hopes of getting better, which we know they’re not. And the family or the patient just ends up with a big bill for not. I just think this is not right.” And he said, “What you’re talking about is something my son is into as well and he is at the Cleveland Clinic. I’m going to see if I can get you out there to the medical school and you can get in for their course on palliative medicine. I can’t guarantee it but I’ll see.” He did it. I went with a gal from hospice; we went for probably ten days and took this palliative medicine course and got certified in palliative medicine. I came back and I said, along with another medical director, “Do you think we could start a palliative medicine department here”? His son had already told him what this was all about. The Cleveland Clinic and Northwestern gave me their whole program. It was on how to set it up and how to budget. I met with our VP here and I asked her, “Could we finance this and how could we do this?” I wanted to get the rooms decorated like a home atmosphere. I gave a presentation. We have something when you are dying with hospice, but we had nothing in between. Everybody isn’t six months or less. We needed this palliative umbrella, which is like a bridge. [01:36:00] I know I was very passionate about it and I felt it was something that we needed to do. I went to give a presentation to the ladies auxiliary here and they funded $50,000, gave us $50,000. We re-did the rooms and wall-papered them. We had seven rooms that became “palliative.” We trained nurses, got a social worker, and had group meetings. We started support group meetings for the families. We got such positive feedback from the families. Somebody was honest with them about where they were going. Now many of the doctors thought that we were just taking the patients, pulling the shades in some dark corner, and just leaving them there. They heard the part about we were not doing any curative care. What we were saying is, “We are not doing any curative care. We’re palliating their symptoms, whether it be pain, spiritual issues, death and dying issues, or family issues.” It didn’t matter what it was, but that we were trying to get those resolved as best as we could. In other words, any disease they had could not be cured. That way we were preparing them for the next stage of their life. It just seemed like a natural progression and it was up and running when I left there in 2000. It is still upstairs and I think it’s a very good program. If I have a legacy, that’s probably it. As a three time cancer survivor, I think that may have had something to do with it as well. I’ve been on the other side of the fence. I know what it’s like to have a disease that makes you question if you’re going to make it or not. It’s good to know that we have education for patients who won’t. I think sometimes we’re inspired by our own experiences.

01:38:49
FitzGibbon:
Thank you so much.

01:38:50
Bykowski:
Okay.

01:38:52
Rigelhaupt:
Thank you.

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