A new study found that out of 322 people with hepatitis C receiving care at a midwestern hospital, 41% described communication problems with their doctors. Most frequently reported problems:
- poor communication skills of physicians (28%)
- physician incompetence regarding the diagnosis and treatment of HCV infection (23%)
- feelings of being misdiagnosed, misled, or abandoned (16%)
- being stigmatized by their physician (9%)
Communication problems were twice as likely with specialists (gastroenterologists or infectious disease doctors) than with general practitioners. People with emotional problems or weak social support were more likely to report communication problems. However, neither psychiatric illness nor current or former drug use were associated with experience of communication problems with doctors.
(Zickmund et al. Hepatitis C Virus-Infected Patients Report Communication Problems With Physicians. Hepatology 2004;39:999 –1007. Abstract here; NATAP has the text of the article here and an accompanying commentary also published in Hepatology by Robert Fontana and Ziad Kronfol here)
This study likely underestimates the extent of communication problems with doctors for current and former drug users with hepatitis C. Here's a sample of things that I've heard from people in a hepatitis C group I've been doing at a harm reduction program in the Bronx:
"My doctor said I had hepatitis, but I don't need to worry about it."
"My doctor said I had the good genotype, so I won't get side effects."
"They tested my blood and told me I was immune to hepatitis A and C."
"I was told that if I want to get hepatitis C treatment, I'll have to stop taking my HIV meds."
"He told me that my liver enzymes are normal, so I don't need hepatitis C treatment."
One last example -- in a recent group, a participant co-infected with HIV and hepatitis C told us that he'd recently started hepatitis C treatment with pegylated interferon and ribavirin. He'd been on hepatitis C treatment for a month, and went back to see his doctor to check in and get his prescriptions refilled. His regular doctor was away or unavailable, so he saw someone else, who gave him new prescriptions. When he got to the pharmacy, he saw that they'd given him a prescription for ribavirin but not interferon. He asked the pharmacist, who checked with the doctor and said that was right, just ribavirin. There's absolutely no medical reason for dropping interferon completely one month into therapy while keeping someone on ribavirin. The participant hadn't been told why interferon was being dropped or given any explanation.
Most of these examples would fall under the category of physician incompetence. But many drug users describe feeling stigmatized by doctors for their drug use -- past or present, real or imagined. For a painful account of the experiences of a drug user with HIV trying to navigate the medical system in New York, see One Junky's Odyssey from the fall 1997 issue of Harm Reduction Communication.
In an article in the Medical Journal of Australia, Lisa Waller describes her experience getting tested by her doctor for hepatitis C:
"In 2000, my doctor’s response to my request for an HCV test was 'you wouldn’t have that'. My subsequent admission of injecting drug use all those years ago was met with silence, but she ordered the test. When I went back for the results it seemed that she didn’t want to know about me or my illness, despite the fact that I was very sick. She offered almost no information at all about the virus, explaining that she 'just doesn’t see it' in her surgery, and handed me a brochure produced in 1991, which said there was little in the way of treatment, that the prognosis was not good, and that the highest risk group was homosexual men. All of this was simply untrue in 2000, but I did not know that then.
"I felt that my GP’s diagnosis was not that I had a serious liver disease, but an untreatable moral malady. If I had been one of the many people who are diagnosed before they experience any symptoms, I would have left her rooms, not told a soul and tried to forget all about it.
"I didn’t go home filled with righteous indignation and contempt for my doctor that day. I was consumed with self-loathing — I felt like a piece of human debris, unclean and totally unworthy."
from Living with hepatitis C: from self-loathing to advocacy. MJA 2004;180(6):293-294. The full text is available here (PDF version) and well worth reading. Related: Treloar et al. Hepatitis C-related discrimination in healthcare. MJA 2002;177(5):233-4. A report from the Third Australasian Conference on Hepatitis C, Melbourne, March 2002. Full text online, PDF version.
See also 'C-change: the report of the enquiry into hepatitis C related discrimination' released by Australia's Anti-Discrimination Board of New South Wales in November, 2001. The authors of this report found that "discrimination against people with hepatitis C is widespread and often motivated by fear and ignorance and is often based on the stigma associated with injecting drug use and associated stereotypes." Executive summary here; conclusions here. The main site links to PDF files of individual chapters, including recommendations; see also a 2-page PDF of the report summary.
See also another article by the group that conducted the study on physician communication -- Zickmund et al. "They treated me like a leper": Stigmatization and the quality of life of patients with hepatitis C. J Gen Intern Med. 2003;18(10):835-44. Abstract here -- "A total of 147 of the 257 study patients experienced stigmatization that they attributed to the disease. Women were more likely to report perceived stigmatization than men. Age, education, professional status, and mode of infection did not influence the likelihood of stigmatization. Stigmatization was associated with higher anxiety and depression, worsened quality of life, loss of control, and difficulty coping. Individuals who experienced stigmatization also mentioned problems in their health care and work environment as well as with family members."
Brian Edlin from the Center for the Study of Hepatitis C at Weill Medical College of Cornell University in New York compiled a list of "Principles for Managing Health Care Relationships with Substance-Using Patients":
· Establish a climate of mutual respect
· Maintain a professional approach that reflects the aim of enhancing patients’ well being; avoid creating an atmosphere of blame or judgment
· Educate patients about their medical status, proposed treatments, and their side effects
· Include patients in decision making
· If possible, establish a multidisciplinary team consisting of primary care physicians, HIV specialists, psychiatrists, social workers, and nurses
· Have a single primary care provider coordinate the care delivered by such a team to maximize consistency and continuity
· Define and agree on the roles and responsibilities of both the health care team and the patient
· Set appropriate limits and respond consistently to behavior that violates those limits
· Minimize barriers to participation (penalties for missed visits, and so forth)
· Recognize that patients must set their own goals for behavior change and work with patients to achieve commitment to realistic goals for healthier behaviors
· Acknowledge that abstinence is not always a realistic goal; emphasize risk reduction measures for patients who continue to use drugs
· Acknowledge that sustaining abstinence is difficult and that success may require several attempts
· Be familiar with local resources for the treatment of drug users
· Pitfalls to avoid:
from Prevention And Treatment Of Hepatitis C In Injection Drug Users. Hepatology 2002;36(5 Suppl 1):S210-9. PDF available here.