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.