Imagine that you or someone close to you has just been told that the biopsy results you have been waiting on have just come back, and they show breast cancer. In addition to dealing with the impact of the diagnosis, how can you make certain that you or your loved one gets the best possible care?
Ensuring high quality cancer care has been the focus of many concerned stakeholders; including health care professionals, health care organizations, policy makers, advocacy groups and patients alike. Unfortunately, not all care is equal and outcomes may vary significantly depending on where you receive your care.
A Tale of Two Women
Two women of the same age, same medical background and same type and stage of breast cancer may be offered widely different options for treatment. One may be offered a chance to keep the breast and the other told that she needs to have the entire breast removed (i.e. ,total mastectomy). One may be well-informed about what to expect during treatment while the other woman is unclear about the specifics of her treatment. One woman may be well-supported by an experienced clinical team, while the other woman is essentially left to fend for herself if complications arise. One may have a few lymph nodes under her arm removed to check for the spread of cancer while the other has all of her nodes removed exposing her to a higher risk of significant swelling of the arm (i.e., lymphedema). One woman may undergo a single operation to treat her breast cancer while the other woman requires two or more trips to the operating room. One woman is told that she needs months of intravenous chemotherapy while the other is simply given a pill that she takes by mouth. Or worse yet; one woman receives life-saving chemotherapy, while the other has this option withheld from her. Finally, one woman may receive her breast cancer treatment with no direct expense to her other than her small co-pay, while the other woman has thousands of dollars of added expenses exceeding her coverage and gets stuck with a large bill that will take her years to pay off.
Unfortunately these examples are not theoretical; I’ve witnessed these differences first-hand, and they are also well-reported in the medical literature. Sometimes, outcomes may also be very different from person to person even when they are treated at the same cancer center. How can this be?
Differences in Cancer Care
Differences in the quality of cancer care was studied by the Institute of Medicine (IOM), an independent organization with the goal to help policy makers and the public make informed decisions about health care. In 1999, The IOM published a report on the quality of cancer care in the United States showing that despite many scientific breakthroughs occurring in the field of oncology, many cancer patients may receive the wrong care, too little care, or too much care in the form of unnecessary procedures. Problems related to medical coverage, access to care and the decision-making process were identified. However, more than a decade after the first IOM report on the quality of cancer care, barriers to achieving excellent care for all cancer patients remain firmly in place. In response to this daunting challenge, in 2012 the IOM organized a committee of experts to study the quality of cancer care in the United States and make recommendations for improvement. The committee found cancer care to be in a state of crisis, lacking in coordination, efficiency, and service. Furthermore, many treatment decisions were not based on the latest research evidence.
“Care often is not patient-centered, many patients do not receive palliative care to manage their symptoms and side effects from treatment, and decisions about care often are not based on the latest scientific evidence.” – IOM 2012
This is also despite the cost of cancer care rising faster than costs in most other areas of medical care. Some experts feel that given the current rate of cost increases, cancer patient care delivery will ultimately become unsustainable.
Recommendations for Transforming Cancer Care
Here are the IOM committee’s recommendations for transforming cancer care:
- Engaged Patients
- Adequately staffed, trained, and coordinated workforce
- Evidence-based cancer care
- A learning health care IT system for cancer
- Research and performance improvement.
- Accessible, affordable cancer care
Now this is not to say that there are not some excellent cancer care centers with well-trained health professionals delivering high-quality care. I like to think we offer this to the patients we treat at our medical center. However, how can you be sure and is there a way to increase your likelihood of receiving high-quality care? The following are a few tips that I hope will help answer these questions. It is the same advice I give to friends and family members who call me for advice about breast cancer care
QUALITY TIPS FOR BREAST CANCER PATIENTS & CAREGIVERS
1. Take your time
Hearing that you or a loved one has just been diagnosed with breast cancer can be devastating news. Although timely treatment is important, it is also important not to panic and make hasty decisions that you may later regret once you have had time to reflect on the situation. There are cases of advanced or extremely aggressive breast cancer, such as inflammatory breast cancer, that require quick treatment. However, most cases of breast cancer are more ‘urgent’ rather than ‘emergent’ medical problems; in contrast to say, a ruptured appendix or bleeding aneurysm. Having the cancer removed quickly may help your anxiety, but rushing into surgery is not likely to improve your chances or survival.
Most patients with early-stage breast cancer have at least a few days to a week or more, to carefully review their options and do their research in order to reach a decision that meets their treatment needs and priorities. I even encourage second opinions in certain cases. Second opinions have several benefits including 1) a chance to hear the information again from another physician, 2) an opportunity to see if any other treatment options are offered, and 3) greater assurance that the first opinion from the initial care team is the same level of care as another treatment center. Taking your time at the beginning of the treatment process can help ensure that your treatment is on the right track to providing high-quality care.
2. Know the facts
Well-informed patients get better results. Having the details and getting all of your facts about your diagnosis and treatment can be big steps towards ensuring better results for your care. Start of by requesting a copy of any of your pathology reports and breast imaging studies related to your diagnosis. Ask your doctor to review this information with you and make sure all of your questions have been answered. You want to ask your physician about the exact type and stage of breast cancer that you have. You may want to do some of your own research as well; having your reports will help you as you do this, as not all breast cancers are alike. Groups like the American Cancer Society, National Cancer Institute and Susan G Komen foundation have very helpful web sites designed for patients to get more information and answer their questions.
After doing your research and speaking with your physician you should have an understanding of your prognosis, treatment options, care plan and available support services to meet your needs.
You should have a discussion with your physician(s) about the various treatment options available to you. This process should take into account your personal concerns and priorities regarding treatment. As much as possible your input should factor into the choices for treatment and the overall care plan. This process is called shared decision-making, and allows physicians to partner with patients in making higher-quality decisions about care. It requires physicians to listen closely to their patients, which is something many patients have reported would improve their interactions with physicians.
Knowing the facts can also help patients avoid problems related to overtreatment or incorrect treatment. In response to these types of problems, several professional medical organizations came together under the Choosing Wisely ™ campaign to create a series of ‘top 5 lists’ of things that patients and physicians should question about their treatment.
Among the Choosing Wisely ™ recommendations for breast cancer care is a recommendation not to perform an axillary lymph node dissection (removal of all the lymph nodes under the arm) for early stage breast cancer when the nodes seem to be normal on exam without first attempting a sentinel node biopsy (specialized sampling of only a few nodes under the arm). Performing a sentinel node biopsy dramatically reduces complications including chronic swelling of the arm (i.e. lymphedema), nerve injury, pain and dysfunction in the arm. It amazes me that in this day and age I still hear stories of women being treated by surgeons who do not perform sentinel node biopsies, and instead make it a routine practice to remove all of the lymph nodes under the arm. In many of these cases the lymph nodes removed will ultimately be found to be completely normal. In fact, newer studies suggest that even when the sentinel nodes sampled show that the breast cancer has spread to the lymph nodes, it still may not always be necessary to remove the rest of the lymph nodes under the arm.
3. Have a team
Cancer is very complex and is best approached by a team of experts. This is commonly referred to as a multidisciplinary cancer care team; which can consist of surgical oncologists, medical oncologists, radiation oncologists, as well as breast radiologists, breast pathologists, cancer dieticians, psychologists, physical therapists, exercise specialists, social workers and nurse coordinators. Newly diagnosed breast cancer patients can often meet with all of the main members of the cancer care team on the same day. Multidisciplinary care teams also meet to discuss treatment plans and review patient cases at tumor conferences; so all of your doctors will have communicated with each other about your care and will be on the same page. Vermont is also very fortunate to have the Cancer Patient Support Program to assist patients throughout their cancer journey with a wide variety of support programs.
Many reports have demonstrated that having a multidisciplinary cancer team improves care coordination, access to treatment services, adherence to best practices and patient satisfaction with their cancer treatment. I highly recommend seeking breast cancer care from a center that uses a well-established multidisciplinary care team in the treatment of cancer patients. It is also a good idea to have a personal support team. Don’t feel you have to go it alone. Your family, friends, church members, and other breast cancer survivors can help you during your time of need.
4. Go with Experience
The saying “practice makes perfect” is as true in medicine as it is everywhere else. Study after study has revealed that the quality of patient care is better with high-volume physicians working at high-volume centers. The simple truth is that if you see a lot of the same conditions you tend to develop a level of expertise with those conditions. In his book Outliers, author Malcom Gladwell reports an interesting finding about expertise. Whether it is excelling in music (e.g., the Beatles), sports (e.g., Michael Jordan) or computer software programming (e.g., Bill Gates), it takes approximately 10,000 hours of dedicated practice to reach the level of ‘expert.’ This translates to the field of surgery where studies have shown that complications and poor outcomes resulting from breast cancer operations are much lower when performed by surgeons who see a high annual volume of breast cancer patients. (I’ll give some more suggestions on how to find a qualified breast cancer surgeon in a future blog). Studies also show that breast cancer survival is improved in patients who are treated at medical centers that treat a high annual volume of breast cancer patients.
One of the first things I look at when asked to comment on the qualifications of a treatment center or physician is how often they treat breast cancer. A specialized breast cancer center with physicians who focus all or a large part of their practice on breast cancer usually indicates at least a minimum level of experience and expertise. Also, a cancer center with physicians who are affiliated with a medical school or academic medical center will often mean that care will follow the latest advances in medical research and that patients may have the opportunity to participate in clinical trials.
You can also look for certain seals of approval to gauge quality. The National Cancer Institute, Commission on Cancer, National Accreditation Program of Breast Centers, National Consortium of Breast Center and the National Quality Measures for Breast Cancer all provide formal certification for breast cancer centers that meet specific criteria for excellence. This usually means that these centers have a certain minimum volume of experience, offer essential patient care resources and demonstrate dedication to quality in breast cancer care. Look for one of these ‘seals of approval’ in selecting your breast cancer treatment center.
5. Eliminate Inequalities
My final point is to mention that there are some very concerning statistics regarding differences in quality and outcomes resulting from differences in socioeconomic, cultural and ethnic backgrounds. For example, women without health insurance are much less likely to get mammograms compared to women with health insurance, and tend to present with larger or more advanced tumors, which may be more difficult to treat. Low-income immigrants tend to have less access to standard of care for breast cancer and may experience lower survival rates when treated.
Here are some more concerning statistics:
- If you are an African American woman, you are less likely to develop breast cancer but more likely to die from the disease than women in other ethnic groups.
- If you are a Hispanic or Latina woman, you are more likely to be diagnosed with breast cancer at an advanced stage.
- If you live in a rural community, you may be hindered by having to travel long distances to receive certain care options or not have access to them at all.
- If you are uninsured, you are less likely to be screened for breast cancer and your risk of dying from breast cancer increases 30-50 percent.
- If you are a lesbian or bisexual woman negative experiences with the health care system may discourage you from seeking routine care, reducing your chance of finding breast cancer in an earlier, more treatable stage.
It is important to not only be aware of these inequalities, but also to work to put an end to them. This striking difference in quality for women with different income levels and personal backgrounds threatens the integrity of health care for all patients. Health care professionals, policy makers and the public can collaborate to eliminate these unnecessary disparities.
Ted James, MD, is a surgical oncologist and Director of the Skin and Soft Tissue Surgical Oncology program at the University of Vermont Medical Center. He also serves as Vermont State Chair for the Commission on Cancer and is an Associate Professor of Surgery at the Larner College of Medicine at UVM.