The Patient at The Tumor Board
Tumor boards, or cancer conference or multi-disciplinary oncology patient management conferences have been mentioned here (see: Second Opinion). All joking aside about the premise of my previous post, tumor boards, or oncology management conferences, as we call them are some of the best 2 hours of my week. My colleagues from medical oncology, radiation oncology, surgery and radiology convene along with specialists from our academic affiliate to present patients, review their pathology, radiology, surgical findings and treatment findings. Depending on the size of the institution and the frequency of the conference, a few to a dozen or more patients may be discussed in a typical 60 or 90-minute conference. Attending physicians from the above-mentioned specialties attend with their colleagues and often times representatives from other medical or surgical sub-subspecialties attend to listen or participate in the discussion. Gastroenterologists, pulmonologists or endocrinologists, depending on the particular patient and type of cancer may be present to discuss their findings or management implications.
Cancer centers recognized as national centers of excellence may also have dietitians, nutritionists, social workers or oncology nurses present at the conference. Increasingly, with more and more use of physician extenders in clinical care, physician’s assistants who may have seen the patient in the office or clinic the first time the patient was evaluated are in attendance. Clinical pharmacists may be present. Finally, representatives from institutional tumor registries, nurse navigators and administrative personnel from the hospital, respective departments or clinics or physician practices may be present. One national cancer treatment organization highlights the presence of specialists with expertise in holistic medicine who attend the patient care conferences. At one time cancer diagnostic and pharmaceutical companies would provide breakfast or lunch and a notepad or pen at the conferences.
Medical students sit in the back and along the sides getting a snapshot of how multiple specialties come together to help a patient. Residents and fellows gather in the chairs towards the front while those presenting their respective services findings or opinions take turns at a podium or designated spot in the front of the room. Many times continuing medical education (CME) is offered to both those attending and presenting at the conference, implying that information of use that reinforces or may alter your practice is presented in a non-commercial fashion.
Up to several dozen physicians, associated care givers, support personnel, administrative support and until many years ago, industry representatives would be in attendance while patient decisions were being made. In the era of HIPAA, the use of patient initials are sometimes used at some institutions to “protect patient privacy” on the list of patients to be discussed. I have even seen where radiology departments remove patient demographics from the images as to keep that information private.
Sometimes heated battles ensue among clinicians advocating for what they think is in the best interests of the patient’s care. Terms such as “paper wars” refer to debates over published clinical trials that suggest one treatment may be better than another for disease-free survival, overall survival or potential cure. Less often debates arise between surgeons and oncologists whether additional surgery is appropriate and whether adjuvant chemotherapy should be given or chemotherapy alone is appropriate. Matters of whether the patient is appropriately “staged” with non-invasive imaging studies as mentioned on this site recently(see: What does the PET-CT scan show?) are discussed. Issues regarding need for radiation therapy, fields available given surgical approach, dose and timing with chemotherapy are discussed.
Nationally accepted evidence-based guidelines based on tumor type (histology), degree of differentiation (grade), extent of involvement (stage), serum and tissue tumor markers, age, performance status, co-morbidities, social issues and more are used to come up with a treatment plan, individualized for each patient.
It is not a perfect system but the format allows for an open, transparent, thought-filled and thought-provoking discussion on how to best preserve quality and quantity of life. Sometimes additional information is needed in the form of more surgery and histological evaluation, imaging studies and/or other invasive or non-invasive tests to allow participants in the tumor board to arrive at a consensus opinion to help the patient.
The one person missing in the room from this entire discussion while this is occurring is the patient advocate removed from the clinicopathologic stakeholders participating in the tumor board. It perhaps goes without saying that the patient is not present for the discussion, but neither is an additional representative present to represent patients at a patient management conference.
Patient advocates are often times included in other institutional/hospital boards and committees but I do not recall ever meeting or seeing one at a tumor board. They are present at laboratory utilization committee meetings, transfusion utilization committee meetings and often times at clinical board meetings when issues of importance to the hospital and their potential impact to certain service lines, departments or programs may be impacted or effected, whether positively or negatively. I have even seen patient advocates present at information technology (IT) meetings to provide a voice and vote, on behalf of patients, our customers and clients as to how IT changes may impact a patient’s experience with the healthcare system. Discussions about published ER wait times on websites, mobile apps for patient scheduling, patient-centric portals, format of EMR discharge summaries in hospitals all over the country likely had a patient advocate at the table when issues of need, risks, benefits, expense, access, privacy, design, implementation and long-term maintenance issues were discussed.
National government healthcare committees, institutional review boards for clinical research and hospital executive boards often times have patient advocates as members. Some are from pastoral care departments or are employed/contracted to serve the role of representing the patient in addition to the other services and departments. Even the Clinical Laboratory Improvement Act Committee (CLIAC) has representation for the consumer, or patient and patient safety.
Do patient advocates attend tumor boards at your institution?
Should patient advocates attend tumor boards?
