Finding the Best Medical Treatment
Frederick R. Jelovsek MD, MS
"My daughter has lupus and we are searching for the BEST treatment we can for her. She has not been in remission in the three years since her diagnosis."
"My question is: How does one go about finding the premier hospital for looking at best practices known for a particular disease and applying them to an individual patient?" -T. J.
This is quite a loaded question and it is with a moderate amount of fear that I undertake to try to answer it. What one person might consider "quality care" might be interpreted by another "expert" as an unproven treatment, an unnecessarily expensive treatment, or even just plain unindicated. Many people are under the mistaken assumption that most of the time there is a "best treatment" that is known with certainty. This is infrequently the case and it is almost always the case when one or several standard treatments have already failed.
You mention looking for a premier hospital to go to. I think you mean physician or group of physicians to go to rather than a hospital. The only time a hospital becomes important in finding premier treatment is when specialized equipment, for example the latest devices to give radiation therapy with the least side effects, is involved in the treatment. Another time to focus on the hospital is when a treatment needs to involve several different support disciplines such as physical therapy, social services, occupational therapy or specialized nursing services for example. Then the facility and its collection of resources becomes important.
If the bulk of the treatment is trying different medical therapies such as it might be with lupus (systemic lupus erythematosis- SLE), then the physician is the key component, not the facility. A medical specialist in a medium-sized town may be as good or better than the medical specialist at a nationally known medical center in a major metropolitan area. This is especially true in a case where diagnosis is the difficult problem since most doctors have access to the same quality of diagnostic equipment across the country. It is also true for treatment of difficult cases except where the treatment involves specialized equipment or team support services for surgical procedures or cancer for example.
What constitutes quality medical care?
Let me give you my definition for quality medical care.
The highest quality of medical care is that which is administered while being aware of the latest scientific medical knowledge, tempered by extensive clinical experience with the specific category of illness, and supported by the necessary resources to address the multiple quality of life effects of that illness and its treatments.
This definition implies the first step is a knowledgeable health care provider who keeps up with current medical literature. Many physicians do this but not all. Specialization in this case helps because it is difficult to know and keep up with all of medicine. If there is a medical specialty society organized around the specific illness or condition you have, then the members of that association or society will have a higher percentage of the membership who keep up with the latest knowledge than non members. Physicians who conduct research into that illness will have studied it even more and know all of the latest research findings although the researchers may not have the same volume of clinical experience in taking care of the illness.
How can I practically go about finding the best resource for treating my condition?
I would suggest one or both of the following approaches:
1. Ask your present physician to help you find out the best resource for you. Your physician knows what treatments you already have received and what unique aspects of the condition you might have. If your doctor is unaware who to refer you to, ask him or her if there is a specialist in your local area who would be aware of nationally known experts and then make it a point to see that physician and discuss referral. Sometimes physicians seem to take offense when you ask about referral. If they do, just continue politely and tenaciously to request who they would seek for a second opinion if they or their family had the condition you have. While a physician may be offended that you no longer trust their judgement, I have never met one who would refer you to an inferior quality of care situation. If the physician seems very knowledgeable and suggests that another expert is unlikely to be able to help you, listen carefully to that advice. You may just be denying that the illness is severe or un curable and prolonging the time to accommodate a chronic medical condition or even an impending death.
2. Finding a quality medical resource on your own is a difficult task but let me relate how a doctor might do it. Keep in mind that many doctors seek local care and treatment for medical conditions they develop. If they seek out nationally known experts but do not know those experts personally, they usually seek the opinions of medical specialists in the specific field and supplement that advice with their own cross references that they detect from the medical scientific literature and membership lists of medical speciality organizations. Steps might include:
- Literature searches (recent 10 years) on PubMed to see who the authors are who are performing the latest research in the area and what institutions they are at.
- Look up recent books for both professionals and consumers and determine where their authors are from.
- Find out if there are any medical speciality societies, associations or organizations that focus around the disease you are concerned with. The internet makes this much easier than it used to be. Identify physician members of these organizations and see if there is a way to contact some of them or have your doctor contact them to ask about treatment resources. You might even contact a member on the opposite coast to see if they would recommend someone near to you geographically to treat your condition.
- Search the internet to see if there are any medical centers of excellence that self-propose to offer the latest medical care for your condition.
- Synthesize and correlate all of this information to select 2 or 3 physicians, institutions or medical centers to possibly approach for second opinions.
- Currently you can also seek out support groups on the internet of people who may also suffer from your condition. While I would not take the isolated advice of any one person who might have had an atypically outstanding or horrible experience, when multiple patients tend to say similarly good things about their experience, you should listen to them.
I do not want to imply that this whole process is easy. It is not. Even physicians who are specialists in a medical area rarely agree where or who provides the best premier health care. I would take this as a sign that many times the differences in health care are very small and the range of quality is not from poor to best but rather from very good to excellent.