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Thursday, August 15, 2013

Not every oncologist can or should deliver survivorship care

I wish I had known earlier that not all oncologists, internist or primary care providers can or should provide survivorship care.

The first oncologist to provide me with survivorship care would feel the lymph nodes in my neck, ask me how I was feeling (“Fine.”) and then hold forth for a half hour about the wrong-headedness of federal research priorities, knowing that I worked for the National Cancer Institute.

Another oncologist I asked to provide me with comprehensive survivorship care balked when I asked him to feel the lymph nodes in my neck. He was an oncological gynecologist and my neck was “not (his) body part.” Comprehensive? Ahem.

Another oncologist to whom I was referred for survivorship care took one look at me when I showed up for a routine visit and exclaimed, “What are you doing here? I have sick people to take care of! Don’t worry, I won’t charge you for this visit.”

I encountered the first doctor early in the development of cancer survivorship as a focal area for oncologists and primary care providers. The second and third were oncologists in major urban comprehensive cancer centers and were in charge of my survivorship care for extended periods in the late ‘90s and early 2000s.

What’s up with that? Why was I so willing to be cared for by clinicians who I knew were so poorly matched to the challenges of guiding me as my care grew increasingly complex with each new cancer diagnosis? And why was it so hard to find someone who was actually willing to help me meet those challenges?  It’s not as though I didn’t have a clue what I needed, and it’s not as though survivorship care remained an unknown, unimportant part of the job of most oncologists and some primary care clinicians.

We are not the only ones who must be convinced that we have unique health concerns following the active treatment of our cancer. Clinicians must also believe that special care for us is important, and they have to learn how to provide that care. Then they have to take the time to listen to us and help us get the tests we need, find solutions for the sometimes intractable lingering physical, psychological and social symptoms of the disease and treatment, and keep a sharp eye out for late effects and recurrences. This is no small order, especially when time is short and insurance reimbursement can be tricky.

Here’s one source of the problem: Recent surveys published in the Journal of General Internal Medicine asked primary care clinicians and oncologists who should monitor and care for cancer patients once they finish active treatment. Almost two-thirds of oncologists had little confidence in the skills of primary care clinicians to order appropriate tests and care for the late effects of breast cancer treatment. And many primary care clinicians agreed with the oncologists: only 40% of primary care clinicians expressed confidence in their own knowledge about testing for recurrence and late effects. Further, in the survey cited above, although oncologists said that they provided treatment summaries or care plans to primary care clinicians a majority of the time, primary care clinicians reported receiving  them a minority of the time.

And so who is it, again, who will take responsibility for our survivorship care?

It would be wonderful if each of our oncologists sat down with us to complete a comprehensive survivorship care plan at the end of our active treatment. And it would be even better that they tell us candidly if they are unwilling or unable to fulfill that plan. If they are not, helping us find someone who will and then formally making the hand-off to them would make a big difference.

In spite of a heavy investment of effort by patient advocacy, professional and government groups with a stake in survivorship care, I don’t see this happening soon, especially with the reorganization of health care currently taking place and the workforce constraints mentioned above.

This means that for many of us, a substantial part of the burden of finding good survivorship care may rest with us and those who love us. If you are in this situation, take a look at this link (here for survivors of pediatric cancers) to see the full breadth and depth of what comprehensive survivorship care looks like. You need a template to make sure you and your new doctor are on the same wavelength: good survivorship care is not just periodic testing and the ritual palpation of lymph nodes.

If asking for a referral where you were treated hasn’t worked or you are unsatisfied with your current survivorship care, take a careful trip through the LiveStrong website where you will find good guidance about where to look for one. Similarly, cancer centers supported by the National Cancer Institute – large and small centers (here for pediatric survivors) – have survivorship programs that might offer you a choice of physicians who will provide comprehensive survivorship care.

Curiously, none of my subsequent cancers were detected by examining my lymph nodes. Some have been found via routine screenings based on survivorship guidelines, the others only through the vigilance of a unique physician who specializes in follow-up care for those treated for pediatric cancers.

It’s a sad surprise to realize that even if you can overcome your fear of recurrence or general resistance to even more contact with medical care, getting yourself the ongoing survivorship care you need (and researchers and experts agree that you do), may not necessarily be that easy.

I wish I’d known earlier that I was going to need to work at getting good survivorship care. And, even more so, I wish I didn’t have to.

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Blog log

Members of the American College of Physicians contribute posts from their own sites to ACP Internistand ACP Hospitalist. Contributors include:

Albert Fuchs, MD
Albert Fuchs, MD, FACP, graduated from the University of California, Los Angeles School of Medicine, where he also did his internal medicine training. Certified by the American Board of Internal Medicine, Dr. Fuchs spent three years as a full-time faculty member at UCLA School of Medicine before opening his private practice in Beverly Hills in 2000.

And Thus, It Begins
Amanda Xi, ACP Medical Student Member, is a first-year medical student at the OUWB School of Medicine, charter class of 2015, in Rochester, Mich., from which she which chronicles her journey through medical training from day 1 of medical school.

Auscultation
Ira S. Nash, MD, FACP, is the senior vice president and executive director of the North Shore-LIJ Medical Group, and a professor of Cardiology and Population Health at Hofstra North Shore-LIJ School of Medicine. He is Board Certified in Internal Medicine and Cardiovascular Diseases and was in the private practice of cardiology before joining the full-time faculty of Massachusetts General Hospital.

Zackary Berger
Zackary Berger, MD, ACP Member, is a primary care doctor and general internist in the Division of General Internal Medicine at Johns Hopkins. His research interests include doctor-patient communication, bioethics, and systematic reviews.

Controversies in Hospital Infection Prevention
Run by three ACP Fellows, this blog ponders vexing issues in infection prevention and control, inside and outside the hospital. Daniel J Diekema, MD, FACP, practices infectious diseases, clinical microbiology, and hospital epidemiology in Iowa City, Iowa, splitting time between seeing patients with infectious diseases, diagnosing infections in the microbiology laboratory, and trying to prevent infections in the hospital. Michael B. Edmond, MD, FACP, is a hospital epidemiologist in Iowa City, IA, with a focus on understanding why infections occur in the hospital and ways to prevent these infections, and sees patients in the inpatient and outpatient settings. Eli N. Perencevich, MD, ACP Member, is an infectious disease physician and epidemiologist in Iowa City, Iowa, who studies methods to halt the spread of resistant bacteria in our hospitals (including novel ways to get everyone to wash their hands).

db's Medical Rants
Robert M. Centor, MD, FACP, contributes short essays contemplating medicine and the health care system.

Suneel Dhand, MD, ACP Member
Suneel Dhand, MD, ACP Member, is a practicing physician in Massachusetts. He has published numerous articles in clinical medicine, covering a wide range of specialty areas including; pulmonology, cardiology, endocrinology, hematology, and infectious disease. He has also authored chapters in the prestigious "5-Minute Clinical Consult" medical textbook. His other clinical interests include quality improvement, hospital safety, hospital utilization, and the use of technology in health care.

DrDialogue
Juliet K. Mavromatis, MD, FACP, provides a conversation about health topics for patients and health professionals.

Dr. Mintz' Blog
Matthew Mintz, MD, FACP, has practiced internal medicine for more than a decade and is an Associate Professor of Medicine at an academic medical center on the East Coast. His time is split between teaching medical students and residents, and caring for patients.

Everything Health
Toni Brayer, MD, FACP, blogs about the rapid changes in science, medicine, health and healing in the 21st century.

FutureDocs
Vineet Arora, MD, FACP, is Associate Program Director for the Internal Medicine Residency and Assistant Dean of Scholarship & Discovery at the Pritzker School of Medicine for the University of Chicago. Her education and research focus is on resident duty hours, patient handoffs, medical professionalism, and quality of hospital care. She is also an academic hospitalist.

Glass Hospital
John H. Schumann, MD, FACP, provides transparency on the workings of medical practice and the complexities of hospital care, illuminates the emotional and cognitive aspects of caregiving and decision-making from the perspective of an active primary care physician, and offers behind-the-scenes portraits of hospital sanctums and the people who inhabit them.

Gut Check
Ryan Madanick, MD, ACP Member, is a gastroenterologist at the University of North Carolina School of Medicine, and the Program Director for the GI & Hepatology Fellowship Program. He specializes in diseases of the esophagus, with a strong interest in the diagnosis and treatment of patients who have difficult-to-manage esophageal problems such as refractory GERD, heartburn, and chest pain.

I'm dok
Mike Aref, MD, PhD, FACP, is an academic hospitalist with an interest in basic and clinical science and education, with interests in noninvasive monitoring and diagnostic testing using novel bedside imaging modalities, diagnostic reasoning, medical informatics, new medical education modalities, pre-code/code management, palliative care, patient-physician communication, quality improvement, and quantitative biomedical imaging.

Informatics Professor
William Hersh, MD, FACP, Professor and Chair, Department of Medical Informatics & Clinical Epidemiology, Oregon Health & Science University, posts his thoughts on various topics related to biomedical and health informatics.

David Katz, MD
David L. Katz, MD, MPH, FACP, is an internationally renowned authority on nutrition, weight management, and the prevention of chronic disease, and an internationally recognized leader in integrative medicine and patient-centered care.

Just Oncology
Richard Just, MD, ACP Member, has 36 years in clinical practice of hematology and medical oncology. His blog is a joint publication with Gregg Masters, MPH.

KevinMD
Kevin Pho, MD, ACP Member, offers one of the Web's definitive sites for influential health commentary.

MD Whistleblower
Michael Kirsch, MD, FACP, addresses the joys and challenges of medical practice, including controversies in the doctor-patient relationship, medical ethics and measuring medical quality. When he's not writing, he's performing colonoscopies.

Medical Lessons
Elaine Schattner, MD, FACP, shares her ideas on education, ethics in medicine, health care news and culture. Her views on medicine are informed by her past experiences in caring for patients, as a researcher in cancer immunology, and as a patient who's had breast cancer.

Mired in MedEd
Alexander M. Djuricich, MD, FACP, is the Associate Dean for Continuing Medical Education (CME), and a Program Director in Medicine-Pediatrics at the Indiana University School of Medicine in Indianapolis, where he blogs about medical education.

More Musings
Rob Lamberts, MD, ACP Member, a med-peds and general practice internist, returns with "volume 2" of his personal musings about medicine, life, armadillos and Sasquatch at More Musings (of a Distractible Kind).

Prescriptions
David M. Sack, MD, FACP, practices general gastroenterology at a small community hospital in Connecticut. His blog is a series of musings on medicine, medical care, the health care system and medical ethics, in no particular order.

Reflections of a Grady Doctor
Kimberly Manning, MD, FACP, reflects on the personal side of being a doctor in a community hospital in Atlanta.

The Blog of Paul Sufka
Paul Sufka, MD, ACP Member, is a board certified rheumatologist in St. Paul, Minn. He was a chief resident in internal medicine with the University of Minnesota and then completed his fellowship training in rheumatology in June 2011 at the University of Minnesota Department of Rheumatology. His interests include the use of technology in medicine.

Technology in (Medical) Education
Neil Mehta, MBBS, MS, FACP, is interested in use of technology in education, social media and networking, practice management and evidence-based medicine tools, personal information and knowledge management.

Peter A. Lipson, MD
Peter A. Lipson, MD, ACP Member, is a practicing internist and teaching physician in Southeast Michigan. The blog, which has been around in various forms since 2007, offers musings on the intersection of science, medicine, and culture.

Why is American Health Care So Expensive?
Janice Boughton, MD, FACP, practiced internal medicine for 20 years before adopting a career in hospital and primary care medicine as a locum tenens physician. She lives in Idaho when not traveling.

World's Best Site
Daniel Ginsberg, MD, FACP, is an internal medicine physician who has avidly applied computers to medicine since 1986, when he first wrote medically oriented computer programs. He is in practice in Tacoma, Washington.

Other blogs of note:

American Journal of Medicine
Also known as the Green Journal, the American Journal of Medicine publishes original clinical articles of interest to physicians in internal medicine and its subspecialities, both in academia and community-based practice.

Clinical Correlations
A collaborative medical blog started by Neil Shapiro, MD, ACP Member, associate program director at New York University Medical Center's internal medicine residency program. Faculty, residents and students contribute case studies, mystery quizzes, news, commentary and more.

Interact MD
Michael Benjamin, MD, ACP member, doesn't accept industry money so he can create an independent, clinician-reviewed space on the Internet for physicians to report and comment on the medical news of the day.

PLoS Blog
The Public Library of Science's open access materials include a blog.

White Coat Rants
One of the most popular anonymous blogs written by an emergency room physician.

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