patient advocacy – Lablogatory

Patient Advocacy in Transfusion Medicine

Since 2008 I have served as the Associate Medical Director and the Medical Director of Transfusion Medicine in a large academic medical center. In addition to overseeing the operations of our transfusion service, I also spend several days per week in our apheresis unit. We currently see between 10-20 patients daily for a wide range of therapeutic apheresis procedures performed by our 5 apheresis nurses including stem cell collection and lymphapheresis procedures for stem cell transplant and CarTcell therapy, respectively. These procedures can last from 90 minutes to 6 hours and includes both outpatients as well as acutely ill patients in our critical care units. Typically we perform procedures from 8 AM to 6 PM but there are frequent requests for procedures that last beyond these hours and occasionally in the middle of the night for life threatening conditions. Despite the long hours and unpredictable days, this provides an opportunity to bond with patients over the hours and days they spend in our apheresis unit.

I remember the first time I met Reed. He was sitting on the side of his hospital bed and was bald and pale in stark contrast to his dark blue pajamas. Although he was thin, I could tell that he was a much bigger man before chemotherapy and the transplant ravaged his body. I introduced myself and he was pleasant and engaging despite how ill he was. He had recently undergone 2 autologous stem cell transplants and now with recurrence of the multiple myeloma he had received his brother’s stem cells and was suffering severe acute graft vs. host disease (GVHD). His entire gastrointestinal (GI) tract was under assault as he was diagnosed with Grade IV GI GVHD and was losing liters of bloody stool daily. Despite the abdominal pain and cramps, I never saw him without a smile on his face. He had been treated with high doses of immunosuppression but his GVHD was unresponsive and now we were called in to perform photopheresis, which has great results for skin and pulmonary GVHD but has not been as effective for GI GVHD. In fact, all our previous patients with Grade IV GI GVHD lost their battle.

The bone marrow transplant physician advised Reed that his prognosis was poor and that he should get his affairs in order. His response to the BMT physician was, I am not leaving my wife to raise our three children by herself and I am going to walk out of this hospital. We performed photopheresis twice a week every week and gradually his symptoms improved. His hair started growing back, his color returned, and he kept his word and walked out of the hospital. He continued photopheresis twice a week every two weeks for 2 years. During that time, he met my son who was only 8 at the time and I met his wife and children. He always asked how my son was every time he came for his treatment and what activities he was involved in. When he finished his 2 years of photopheresis, he brought every pathologist and nurse a long stem red rose and thanked us for saving his life.

Several years later, Reed started to experience renal failure as another complication of GVHD and again he was referred to our clinic for plasmapheresis. We picked up where we left off during his weekly treatments. Again, his positive attitude and compliance with treatment were successful in saving his kidneys. This past summer I went to an outdoor concert. At the end of the night, when everyone was leaving, I saw Reed and his wife! I was so happy to see him looking healthy and strong. I introduced him to everyone who was with me, telling them that Reed was our miracle patient, the only patient that survived Grade IV GI GVHD. This fall, a card was delivered to my office. It was a birthday card from Reed to celebrate my 50th birthday! That is so typical of Reed, still thinking about others and wanting to do what he can to show how important others are to him!!

-Kimberly Sanford, MD is the Medical Director of Transfusion Medicine at Virginia Commonwealth University Health.

How One Phlebotomist Can Positively Influence Patient Care

Can you remember where you were when an experience showed you who you could be? I do. After graduating college, I wanted to find a way to harmonize my passion for community with my need to make an impact on society, so I began volunteering at the University of Colorado in the Cardiac Intensive Care Unit. I had an experience there that inspired me and has shaped my career’s trajectory.

During one quiet day on the unit a phlebotomy technician approached me with a task: to obtain a couple positive and uplifting movies for a patient who would most likely not make it through to the next day. Confident in my ability to achieve this, I hurried down to the volunteer office. As I looked through the selection of DVDs, I became disheartened. Nothing in their collection would do. All I could think was that this patient was living his last moments, and I couldn’t provide a happy distraction. When I returned, my sorrow was quickly reversed when I found the technician by the patient’s bedside, using her phone to watch his favorite movie with him. I was so moved by her compassion, I hosted a DVD drive to collect positive, uplifting movies for situations like this

I called numerous radio stations to get the word out and was featured on the local country radio station’s morning show to announce my drive and mission. My volunteer position, in combination with my customer service job, had allowed me to develop a large clientele and access to a community willing to help me in my efforts. I was touched by all the patrons who passed out flyers in the neighborhood about the drive. I ended up collecting over 200 DVDs, which I proudly delivered to the volunteer office. This intersection of medicine and community allowed me to experience firsthand the power of compassion in the medical community. I discovered my profound ability to bring together a community of unlikely individuals in an insightful and moving way. This experience also made me think seriously about the possibility of becoming a phlebotomy technician.

Four months, later I was practicing the art of phlebotomy in a hospital setting. As a phlebotomist I was doing more than drawing blood; I was learning the fundamentals of healthcare such as patient privacy, patient advocacy, and how to prevent the transmission of disease. I learned the importance of diagnostic and laboratory testing, how blood samples can provide clues to diagnosis and treatment. Over the years my patients have shown me the meaning of tragedy and triumph, hope and disappointment, and most of all, the importance of being kind and gentle to those who are sick and in need. After drawing blood for more than 5 years with nearly 15,000 hours of patient care experience, I’ve learned the duty of a phlebotomist extends beyond the needle. It requires passion for diagnostic testing, patient education, patient advocacy, as well as dedication and commitment to others, to opportunities to learn, to engage in team collaboration and the ability to provide passionate medical care. Phlebotomy allows you to approach medicine with a multidisciplinary mindset and the ability to work in a medical community with a discourse of many facets under the unified goal of improving the quality of life across communities both nationally and abroad.

Before I witnessed the compassionate care of a phlebotomy technician, I was unsure of how to combine my passion for community with a rewarding career. In witnessing such compassion and care beyond duty, I was inspired to help, which ultimately inspired a community. That one experience showed me who I was supposed to be and what I am today – Kristi Nelson, Clinical Laboratory/Phlebotomy Coordinator.

That first experience now serves as the standard of care for my own phlebotomy team. I ensure we provide patient care that extends beyond the expectation, care that inspires change and creates a butterfly effect of positivity and compassion, in the same way that the phlebotomist had inspired me. This is just one example of how a phlebotomy interaction not only with a patient, but with other medical professionals (volunteers included) can influence patient care and the future of medicine in a positive way.

-Kristi Nelson is a Laboratory Coordinator for the Clinical Laboratory, Client Services and Customer Support at Orlando Regional Medical Center. It was through her work as a certified phlebotomist and emergency medical technician that Kristi found her passion for the healthcare community and leadership. Kristi’s leadership style follows the belief that if your actions inspire others to, learn more, do more and become more then you are a leader. Kristi demonstrates her passion for leadership by participating as the Compliance & Ethics Ambassador, Orlando Health Way Ambassador, and spokesperson for Orlando Health’s volunteer campaigns for the laboratory. Kristi holds a BA in Women’s and Ethnic Studies from the University of Colorado. Kristi is completing her BS in Neuro Psychology from the University of Central Florida and a dual Masters of Business Administration and Science Management and Leadership from Webster University.

Clinical Laboratory Scientists are Imperative to Patient Education

Medical Laboratory Professionals work behind the screens of the medical industry. The contributions produced by this diligent, dynamic, accuracy-driven teams, provide approximately 70% of diagnostic information. This information is imperative for proper diagnosis and treatment. Due to the nature of laboratory work, laboratory personnels are not visible at the forefront of delivering patient care. Therefore, much of society is unaware of the efforts conducted within other parts of the medical industry.

In November of 2018, I had an experience with an elderly couple that will always remain at the forefront of my mind. I was an evening shift Blood Bank Technical Supervisor at a Trauma Level I hospital housing with more than 1000 beds. The Blood Bank served in/out transfusion-dependent patients, as well as being a transplant institution conducting cardiac, liver, and lung transplants. To say we were busy is an understatement.

We had an outpatient order for an older woman who was accompanied by her husband. Her husband, being her advocate, was known to express his concern regarding an issue concerning his wife. The patient’s two units of blood were delayed and the patient’s husband proceeded to call the blood bank to inquire about the delay. The medical laboratory assistant informing him the order was being worked on was not enough, so he proceeded to hound the nurse. The nurse then proceeded to ask to speak to the supervisor.

Before speaking to the nurse, I got the status of the order and asked the technologist approximately how much longer the wait would be. She explained intital testing had revealed an antibody, and so she followed protocol and informed the nurse there would be a delay in blood products.Completing the workup and finding appropriate blood for the patient is what caused the delay. She was at the last portion of crossmatching the blood, and after my review of the workup, it should be 15 minutes.

I informed the nurse it would be 15 minutes, and she pleaded with me to explain the delay to the patient and her husband. After receiving confirmation from my manager to proceed, I hand-delivered the blood to the outpatient room.

“Perception is reality,” so it is imperative to be aware of all verbal and nonverbal communication when interacting with patients. Therefore, accompanied by the nurse, I entered the room and introduced myself and my position. I explained in layman’s term an ABO Type, antibody screen, and finding suitable blood when an antibody has developed. When I was through, they had an exceptional understanding of concept and turnaround time. The patient and husband were appreciative of my explanation and grateful for my staff. The patient’s husband then asked me about my education and what it entailed for me to hold my position. He was highly impressed and never knew all the science and math courses required to become a medical laboratory scientist. He said it was an opportunity he was going to pass along to his granddaughter, who was interested in science.

The following day, the patient’s husband called and apologized to the staff member he initially spoke with and praised the work we do for all patients. This experience highlighted the importance of training laboratory management when interacting with patients. It is more common for the pathologist or medical director to reach out to patients but there are times, especially on the off-shifts, where a laboratory supervisor or manager may be the best option available.

Being an advocate for the medical laboratory science profession is a means of educating the society of a vital career which impacts all lives. Medical laboratory lrofessionals may be behind the scenes, but to administer treatment, essential laboratory results are required; without the laboratory – you’re guessing.

-Tiffany Channer, MPH, MLS(ASCP)^CMhoned her skill and knowledge of Blood Banking at Memorial Sloan Kettering Cancer Center in New York, NY, where she completed her 9 year tenure at Memorial Sloan as Blood Bank Educational Lead Medical Technologist III/ Safety Officer. She’s currently working as a Quality Assurance Specialist / Educational Supervisor at Memorial Sloan Kettering Cancer Center. Tiffany was a Top Five 40 under Forty Honoree in 2015 for her dedication and advocacy to education and laboratory medicine.

Patient Advocacy: A Laboratory Professional at the Bedside

Before I became an MLS Program Director, I worked for nearly 20 years in Hematology. I was particularly interested in Coagulation and was excited to work as the Coordinator of the Special Hematology lab, overseeing coagulation and special RBC testing. Our Pathology Department offered a consultation service for these cases and I was included along with a team of pathologists, residents, fellows, and clinicians that worked with patients and their families to diagnose patients and manage their treatment plans.

One of my most memorable moments was when we had a patient with a previously diagnosed platelet disorder who became pregnant and sought advice regarding the delivery of her child. Her doctors worked with our pathologists to weigh the risk of bleeding complications associated with different modes of delivery, while also considering the welfare of the child who may have inherited the platelet disorder. It was decided that they would take a non-surgical approach to minimize risk for the mother, but would monitor the baby closely. That’s where I came in! I was asked to be on call for the child’s delivery in order to be available to collect samples to monitor the baby’s progress and perform the necessary testing to inform her doctor’s decisions. At the time, on-call meant carrying a pager. When my pager went off, I met the obstetrical team at the hospital and accompanied them into the delivery suite. Labor progressed as expected and when the baby’s head was visible, I assisted the doctor in collecting a tiny amount of blood from the baby’s head, enough to look quickly under a microscope to determine if the baby’s platelets showed any similarity to the mom’s. I was delighted to say that the platelets appeared normal in number and size, minimizing the bleeding risk for the baby. The patient continued to deliver a healthy baby girl without complications.

Once the delivery was complete, I was able to collect enough blood from the placenta to perform definitive testing to rule out any evidence of the platelet disorder in the baby. This was an opportune time as the testing required a large volume which would have been difficult to collect from an infant. Once again, the testing ruled out any evidence of the bleeding disorder in the baby. Mom not only had a beautiful baby, but enjoyed the peace of mind associated with the results of her laboratory testing. As was often the case with our patients, we would see them from time to time in the management of their bleeding disorder. It was always a joy to see our patient visit with her daughter.

-Susan Graham, MS, MT(ASCP)SH^CM is the Chair and MLS Program Director in the Department of Clinical Laboratory Science at SUNY Upstate Medical University. Ms. Graham is a current volunteer for ASCP, serving on the BOC Board of Governors, the Hematology and Joint Generalist Exam Committees and the Patient Champions Board.

What Does Patient Advocacy Mean for Pathologists?

As pathologists, patient advocacy and safety have quite unique meanings as compared to our colleagues on the wards and in the clinics. It is such a unique opportunity to affect further care and treatments, depending on how testing is used. I find the combination of patient advocacy within the clinics an opportunity for pathologists to possibly meet patients and learn from our clinical colleagues about how much the lab truly affects patient care.

At my institution, we have what is designated as “Diagnostic Management Teams” (DMT). At each DMT, our clinical pathology teams perform actions such as writing interpretations for difficult test panels or review the charts to make sure teams have changed their patients to the proper antibiotics. . In our coagulation DMT, we write the interpretations for complex esoteric coagulation studies to ensure: 1. the right tests were ordered, and if they weren’t, we recommend which are appropriate, 2. these complex tests are explained in a way that is understandable to our clinical colleagues and 3. proper patient care and safety for tests which are very critical to patients. To add a layer to this complex testing system, we also have the opportunity to attend benign hematology clinic with one of our attendings. I found this experience to be rather eye opening. Pediatrics hematology clinic is an interesting place whose patients are diagnosed with a wide variety of diseases. A vast majority of these pediatric patients have a parent who has been deemed a “bleeder” or a “clotter” at some point in their lives, or the patients themselves have exhibited such conditions. Often, the parents do not have a definitive diagnosis, and so the investigation begins. The hematologist, who also is one of the coagulation DMT attendings, will order panels which fit with clinical history not only on the patient but more often than not on their parents as well. This allows the DMT to analyze the nuances of the complex coagulation system, even down to multimer gels to figure out which type of von Willebrand disease a patient may have. Although these clinic visits may seem superficial, they give families such a comfort to know a classification of their disease, how it can be treated and if it has been passed down to the actual patient, their child. One such instance, we actually produced a family pedigree with the type of von Willebrand disease within them and then did confirmation testing. Seeing the delivery of information and subsequent relief on the patients’ faces is always a gentle reminder of how much we affect and advocate for our patients in the lab, which starts with the order or a “simple test.”

-Melissa Hogan, MD is Chief Resident in her fourth year in anatomic and clinical pathology at Vanderbilt University Medical Center and will be starting her Cytopathology fellowship at VUMC in 2020. She is currently Chair-Elect of ASCP Resident Council. She is passionate about patient care and medical education.

The Forensic Pathologist as Patient Advocate

Patient advocates are simply people who care about patients as fellow human beings enough to act on that care. Forensic pathology fascinates many people, but hardly anyone realizes how strongly forensic pathologists advocate for patients.

Forensic pathologists have the responsibility of identifying human remains and determining the cause and manner of death for individuals that die suddenly and unexpectedly. Most often, we accomplish this mission by performing an autopsy. Death makes many people uncomfortable, and we’re accustomed to grim jokes about their work when meeting someone. Typically these comments carry an undertone that because decedents cannot talk, we don’t need interpersonal skills. Not only is this untrue, comments such as these provide an educational opportunity.

It is true that our patients have already died, but the relatives of our patients are very much alive. Those relatives have needs that we work to provide and questions we strive to answer. The most common question relatives have is “Why did my loved one die?” which is precisely what the pathologist is working to determine. We regularly talk with relatives of decedents that we’ve examined. We can tell family members why death occurred, including any implications that the death has for remaining members of the family. We can also help families begin to work through the social and bureaucratic requirements that death brings for those still living, such as the need to make arrangements for the disposition of the body and the need for a death certificate. (For example, after a person dies, that person’s financial accounts are frozen until a death certificate becomes available to unlock the accounts.)

Forensic pathologists work to develop a good relationship with the decedent’s relatives. Because anger and bargaining are part of grieving, conversations with relatives sometimes begin as though the relative and the pathologist are adversaries, but with time and compassion, the relationship usually transforms into a more appropriate professional relationship. A particularly important aspect of family interactions is listening to a grieving relative, because listening with care helps someone who is grieving. Attempting to build a good relationship with the decedent’s relatives does not mean that the pathologist is a blind advocate for the family. We won’t change the cause of death so that the family can reap more financial benefit from the death, for example. Lies will not help someone pass through the process of grieving in a healthy way – truth, time, and patient, loving care are the necessary therapeutic measures.

In the case of homicides, forensic pathologists advocate for the decedent by calling the death what it is and then testifying to the medical facts of that death when a suspect is tried in court. The pathologist testifies to the medical aspects of what caused death without trying to ensure that the suspect is either convicted or acquitted. Trying to sway the jury’s verdict is the work of attorneys; presenting the medical facts of why and how the decedent died is the work of the pathologist.

Forensic pathologists advocate for public health by providing an accurate cause of death. Death certificate data provide an essential component for assessing public health, and those data are an important determinant for allocation of medical research funds and for interventions to improve public health.

Like other pathologists, forensic pathologists typically do their work quietly in the background, advocating for their unique patients in their own special way. People give little thought to professional interactions with a forensic pathologist until forced to do so; in that difficult time we try to serve as best we can.

-Gregory G. Davis, MD, FASCP graduated from Vanderbilt Medical School and trained in pathology at Vanderbilt University Medical Center, Nashville, TN, followed by a fellowship in forensic pathology at the San Diego County Medical Examiner Office in San Diego, CA. Dr. Davis then joined the faculty at the University of Alabama at Birmingham, where he currently serves as a Professor and as Director of the Forensic Division of the Department of Pathology. Dr. Davis also serves as Chief Coroner/Medical Examiner for Jefferson County, Alabama, the county in which Birmingham is located. Dr. Davis has earned a Master of Science in Public Health from the UAB School of Public Health. His research interest is the application of epidemiology to the study and practice of forensic pathology, especially drug abuse. He has published 74 peer-reviewed manuscripts, including serving as lead author on the 2013 opioid position paper of the National Association of Medical Examiners. He is currently working as chair of a panel revising and updating the NAME opioid position paper for expected publication in 2020. He serves on the editorial boards of the Journal of Forensic Sciences and Forensic Science, Medicine, and Pathology. Dr. Davis is a Fellow At-Large Director on the Board of Directors of the American Society for Clinical Pathology.

Patient Interaction

Medical school councilors have good intentions in mind when they steer medical students who realize that direct patient care isn’t their strong suit into pathology. But I am different kind of pathologist – the one who sees (or talks to) patients every day. I am a member of unique subspecialty – Transfusion Medicine – which is the most patient-centric subspecialty of all pathology subspecialties. And, contrary to the popular wisdom, I like seeing patients.

Don’t get me wrong though, my heart and soul still live in the lab, deeply rooted in understanding test performance, troubleshooting and quality control. But direct patient care helps to put all the work I have done in the lab into a perspective.

One program that became especially dear to my heart is our chronic RBC exchange program for the kids and adults with sickle cell anemia who have high risk of developing serious complications from the disease, such as stroke, acute chest syndrome, and severe iron overload. As an apheresis physician I see these patients quite frequently due to the nature of the program – chronic RBC exchanges every 4 to 6 weeks. This also means that I quickly had to learn quite a lot not only about managing the exchanges, but also about patients’ success and failures, spend time explaining to parents the benefits of the program and engaging them to maintain compliance with rigorous schedule. The work is not immediately rewarding. All the adjustments I do to the plan of care show changes in lab values in a month or two at best. But it is not entirely about numbers. Another aspect that makes this program special is when you notice that the kids you treat are doing better at school, have less ED visits and overall live a more fulfilling life.

Sometimes the patient interaction is not as direct as in the case of the sickle cell RBC exchange program. For example, being part of the obstetric team that cares for the patient with severe hemolytic disease of fetus and newborn is also extremely rewarding. And the more challenging clinical question is the more rewarding it is in the end. Just this summer we had a patient who developed an antibody to very high frequency antigen that is present in 99.7% of the population and finding the right donor for intrauterine transfusion involved quite a few people in at least 3 cities. When all the pages, phone calls, emails, and personal conversations between me and residents, obstetricians, anesthesiologists, pediatricians, and blood suppliers result in a positive outcome for mom and baby – I feel elated. And who wouldn’t?! That is why I enjoy what I do!

-Aleh Bobr MD is currently the medical director of blood bank and tissue services at University of Nebraska Medical Center in Omaha, NE. He did his residency in Anatomic and Clinical pathology and Fellowship in Transfusion Medicine at Mayo Clinic Rochester, MN. Prior to that he did his post-doctoral research fellowship in Immunology with focus on dendritic cell biology at University of Minnesota and Yale University. He received his medical degree from Vitebsk State Medical University in Vitebsk, Belarus. Current interests include application of apheresis, platelet refractoriness.

Patient Advocacy: Introduction

“I do not really understand what pathology is,” I said during my first round of interviews at ASCP. “In fact, I have a website page in front of me that describes it and I still do not really get it. I want to be upfront about that before we go any further in my interview process,” I followed. Needless to say, I got the job, but that experience really stuck with me. As I learned more and more about pathology and laboratory medicine, I was amazed that I had not known more about it. I had been to the doctor all my life, I had received some serious diagnoses, and I thought I was pretty well-versed in what my medical care entailed.

In the last few years that I have been with ASCP I have become passionate about educating patients about the role the medical laboratory plays in patient care. Without that understanding, patients will be less empowered and less likely to advocate for themselves. Their family doctors might order tests that they do not want or not order ones they that do. They might not understand certain results, which means that they are less likely to take an active role in their care. The more we education patients and their caregivers about pathology and laboratory medicine, the higher quality health care we create. Educated patients are empowered patients and it is imperative that education includes the laboratory.

Through directing the ASCP Patient Champions program, I have been fortunate to meet incredible patients, all who have some understanding of the role the laboratory played and plays in their care. Hearing them say that without the laboratory, they would only be a memory, is incredibly powerful and humbling. The active role these patients play in their care has allowed them to be more resourceful and more hopeful. For some of them, seeing their own slides has been a cathartic experience because they could suddenly see the enemy they were fighting. Others are now educating new patients about their lab tests and taking time from their own busy schedules to volunteer at hospitals and clinics.

It can also be an inspirational experience for laboratory professionals and pathologists to hear how they impacted a patient’s life. I have personally shed many tears when interviewing patients so I can only imagine what it is like to hear from someone whose life you have impacted, let alone meet them in person. It can also really help patients to have their diagnosis be explained by someone working in the lab and to understand why their blood is drawn or why a biopsy is needed.

This new series on Lablogatory called Patient Advocacy, will explore the topic of patient advocacy from laboratory professional, pathologist, and patient perspectives. Each month, you will hear how patient interactions have impacted lives and what we can do to make more people aware of the crucial role the medical laboratory plays in patient care. You are all changing and saving lives every day. Let’s learn together how we can increase our patient advocacy to help them even more.

-Lotte Mulder, EdM, is the Senior Manager of Organizational Leadership and Patient Engagement at ASCP. She earned her Masters of Education from the Harvard Graduate School of Education in 2013, where she focused on Leadership and Group Development. After she graduated, Lotte started her own consulting company focused on establishing leadership practices in organizations, creating effective organizational structures, and interpersonal coaching. She has worked in Africa, Latin America, Asia, and the U.S. on increasing leadership skills in young adults through cultural immersion, service learning and refugee issues, and cross-cultural interpretation. She is currently working toward a PhD in Organizational Leadership.