As a patient who has been diagnosed with breast cancer and is about to undergo treatment or have completed treatment for this disease, you have rights – rights that are specific to you and your present medical situation.
Wherever you choose to receive your treatment and/or follow up care, keep these rights in mind. Ask the health care provider where you are treated how they “measure up” against this patient’s bill of rights. How well a provider and institution is able to meet and comply with these bills of rights should be factored into your decision about where to receive treatment and follow up care.
- Responsibilities of the breast cancer patient
- Responsibilities of the Breast Center health care team
- Definitions of NCI-designated cancer programs
Rights of Patients Diagnosed with Breast Cancer
- Patients who have been advised to see a surgeon due to an abnormal mammogram or breast lump should be seen as soon as feasibly possible by a physician who specializes in diagnostics for breast cancer diagnosis and treatment.
A Johns Hopkins Breast Center service standard states that a woman whose biopsy is proven to have breast cancer will be seen as soon as feasibly possible by one of our oncology faculty specializing in breast cancer. This individual is a surgical oncologist.
- Patients can expect to be evaluated by a multidisciplinary team of health care professionals dedicated to the diagnosis and treatment of women with breast cancer.
This team should consist of several surgical oncologists, medical oncologists, radiation oncologists, radiologists, plastic surgeons, pathologists, nurses, social workers/counselors, genetics expert, and rehabilitation therapists, all of whom specialize in breast cancer treatment.
The Johns Hopkins Breast Center has a multidisciplinary team that meets this description. Many facilities boast of having a multidisciplinary team but the team consists of only one health care professional from each specialty. Ideally, there should be several from each specialty. Preferably, these professionals should be dedicated to the diagnosis and treatment of breast cancer and not have breast cancer as one of many types of cancer they treat. Patients do not have to be seen by the entire team at once to be afforded the expertise of the time. Case conference/tumor board meetings take place to discuss complex case presentations for group discussion as well.
- Patients should expect to be cared for by physicians who are board certified by the medical profession in the treatment of breast cancer.
Every physician in the Johns Hopkins Breast Center is board certified in his/her specialty and has extensive experience and knowledge in the field of diagnosing and treating breast cancer.
- Patients have the right to receive the best care and treatment possible.
This is best provided by a hospital that meets the standards defined by the Approvals Program of the Commission on Cancer of the American College of Surgeons.
Johns Hopkins is one of the few medical institutions in the region with this designated status at the highest level possible. It requires adherence to a rigorous set of standards including close monitoring of clinical findings and clinical outcomes by the American College of Surgeons. The hospital‘s physicians must have case conferences for review of one another‘s findings and also have a cancer committee for monitoring the quality of care provided. Johns Hopkins Medicine is approved by the Commission on Cancer to be a comprehensive Cancer Program (NCIP). We meet the standards to be designated as a facility that provides a full range of services for diagnosis and treatment of cancer.
- Patients should have the right to directly participate in the decisions made about their care and treatment.
They should be treated as an equal partner of the health care team starting at the time of their first appointment for evaluation.
It is incorporated into the philosophy of the Johns Hopkins Breast Center that our patients not only have the right to participate in the decision making about their care and treatment but are encouraged to do so. We want our patients to feel that their opinions and input are valued. We also want them to feel confident in the decisions made about their treatment as they proceed through each stage of treatment. We take pride in having each patient be a part of her health care team.
- Patients have the right to information about their diagnosis and treatment options.
The education process should begin at the time of their first appointment for evaluation. Information should be provided verbally and in writing as a means of ensuring effective communication.
We begin the educational process when the patient comes for her first appointment. One of the most effective ways to help patients regain control of their lives is by empowering them with information. Johns Hopkins Medicine is nationally recognized for its comprehensive patient education program. We strive to continuously improve the contents and methods of providing patient education information by asking our previous patients for their opinions and advice.
- Patient‘s family members should be encouraged to take part in supporting the patient, both physically and emotionally.
Designated family members chosen by the patient should be encouraged to participate with the patient in educational sessions conducted by the health care staff with the patient.
Breast cancer is a disease that affects families, not just the patients. The patient should not be expected to go through this experience alone. She needs the love and support of her family and friends. We have a special patient education program designed specifically with the patient and her family in mind. The patient identifies who she plans to have as her “care partner.” This individual is encouraged to attend the educational programs provided to prepare the patient and the care partner for what to expect before, during and after surgery.
There is also special educational information for patients undergoing surgery, reconstruction, radiation therapy or chemotherapy. We also encourage, with the patient‘s approval, that the care partner come for each visit and listen as the physicians and nurses discuss with the patient. This provides an additional person hearing the information provided to the patient during a time when the patient may feel nervous or stressed. The care partner can utilize the Breast Center staff for help and counsel as well.
- Patients should have the opportunity to participate in clinical trials related to breast cancer treatment and should be provided information about the trials that they qualify for throughout their diagnosis and treatment phases.
Unfortunately, not many breast centers offer patients the opportunity to participate in clinical trials because they do not have a designated status by the Commission on Cancer. The patient should have the right to participate in a clinical trial wherever it is being conducted. This is another reason for checking to see if the facility you are considering has a designated status (NCIP status) to be a full participant and provider of clinical trials that may be of special benefit to your particular situation. Call 1-800-4-CANCER for information about which breast centers are participating in clinical trials for breast cancer.
- Patients should expect to be treated by doctors and nurses who can provide state-of-the-art care.
They should be given access to state-of-the-art surgical care, medical oncology care, radiological care, and radiation oncology care, rehabilitation and nursing care. To accomplish this, the latest technology available must be accessed whenever appropriate and patients should feel assured that the most comprehensive and up to date treatment options will be utilized.
Many hospitals have improved their technological abilities in recent years. It is not enough however to have the equipment needed. They also must have the specialized training in how to properly use this equipment for diagnostic or treatment purposes. Facilities that treat a large number of women with breast cancer and have extensive experience with the use of this new technology are going to provide better outcomes than those who treat few women. Ask about volume statistics. Ask about the type of certification programs faculty have completed to be able to appropriately use this equipment. Each physician should be credentialed in performing procedures with the newest technology.
At our Breast Center, our faculty are specifically trained in the use of all diagnostic and treatment equipment. The surgical oncology faculty in the Breast Center has expertise in sentinel node biopsy as well as has established it as part of their standard of practice. Other state-of–the-art procedures do not require new technology but require special training and expertise, for example, knowing how to do the latest breast reconstructive surgeries. Johns Hopkins Medicine has plastic surgeons that are credentialed to perform microvascular surgery enabling us to offer women the option of having DIEP flap , S-GAP or other free flap reconstruction rather than the traditional TRAM flap, to preserve her muscles and prevent delayed complications later.
- Patients should expect to be medically and surgically managed with every effort to prevent or minimize side effects of breast cancer treatment.
There is wide variance across the country and even in local areas regarding this issue. Every effort should be taken to continuously improve the care provided to women with this disease.
- Patients should to be able to express their opinions openly and freely, and be heard.
If they have concerns about their care or wish to make recommendations to the staff for improving care or services, their opinion should be taken seriously.
Patients have the right to express their opinions and offer advice as to how care and services can be improved at Johns Hopkins Medicine. We solicit our patients’ input by conducting patient satisfaction surveys asking them for their opinion about each aspect of care and service they have received. The results are taken to the Breast Center Steering Committee and are used to set the goals for improvement for the coming months. Ideas result in improvements in care and services for other patients who are diagnosed and treated in the future.
- Patients have the right to talk with patients previously diagnosed and treated in the Breast Center to obtain answers to candid questions and to receive ongoing emotional support.
As a means of providing more customized and individualized support to our patients, we offer to connect the patient, who has been newly diagnosed, with a Johns Hopkins Breast Cancer Survivor Volunteer. (The program is called Survivors Helping Survivors). Our survivor volunteers are women who have been diagnosed and treated for breast cancer and now offer emotional support as volunteers for the Breast Center. We try our best to match a newly diagnosed patient with a woman of similar age, stage of disease and treatment plan, socioeconomic background and other demographic data so that the patient will be able to talk with someone who has taken almost the same journey for the treatment of her breast cancer.
Although each patient may react differently to coping emotionally there are commonalities that patients discover they each share. Being able to talk with a patient who has been treated at the same facility is a great benefit to a newly diagnosed patient. The volunteer is familiar with the treatment plan and the doctors and nurses involved with the newly diagnosed patient‘s care. This familiarity reduces stress and anxiety for the new patient about to undergo treatment. The survivor volunteer stays connected with the patient as long as the patient wishes—in some cases this is for a lifetime!
- Patients have the right to expect effective continuity of care, including timely communication between the Breast Center physicians and the patients’ referring physicians and other health care providers.
It is important that the patient’s primary care physician and other health care professionals directly involved with the patient’s care be kept informed of the diagnosis, treatment, and progress of the patient. The Johns Hopkins Breast Center physicians keep other health care providers informed by sending copies of clinic notes, operative reports, pathology reports, and discharge summaries. For those receiving all their care and treatment at our Breast Center, their clinical information and status is electronically available to the providers.
- Patients can expect urgent care needs to be effectively addressed.
Health care professionals are available 24 hours a day, 7 days a week to accomplish this. A patient needs to feel confident that if she experiences a medical crisis that is urgent or emergent her situation will be taken care of immediately and effectively. At our Breast Center patients are educated about warning signs that signal a problem might be developing. This helps reduce the occurrence of actual emergent situations. There is also a health care professional available 24 hours a day, 7 days a week to address urgent and emergent needs. The nurse practitioner stays in daily contact with the surgical patients and maintains close monitoring until the patient‘s drains are removed. Equivalent programs exist for patients undergoing other therapies.
- Patients can expect to have their emotional needs and those of their families personally and individually assessed and supported through interventions made by the physicians, nurses, social workers and counselors.
Each patient seen here is given a psychological assessment using interviews and observation. This enables the health care team to identify patients and family members in need of urgent supportive interventions by a social worker or counselor. There is also a formal support group for breast cancer patients who meet on a monthly basis and a special support group for women with metastatic disease that meets weekly as well as a Cancer Counseling Center for one-on-one professional counseling for individual patients or their family members. Breast cancer survivors who are part of our professional staff as well as survivor volunteers play a key role in providing emotional support to breast cancer patients, beginning from the time of their initial diagnosis through the completion of their treatment and beyond if the patient desires.
- Once a patient has been treated for breast cancer she should have medical management and be followed for the rest of her life.
Long term follow up is considered a standard of care for all patients. The length of time may vary as to how long the patient is monitored by an oncologist and may also depend on the stage of the disease, along with other medical and psychological factors. All patients are to be appropriately transitioned into survivorship care when the time is right for them.
Each patient treated at our Breast Center continues to receive her follow up monitoring by her oncology team for a designated period of time, based on stage of disease and other factors. The monitoring intervals that are the most appropriate for long term follow up have been established by the Breast Center team. After an appropriate interval of time, in most cases approximately two to five years, the patient is graduated to be followed by other health care providers in the community which may be the primary care physician, gynecologist or an internal medicine physician. Our breast cancer survivor faculty who are gynecologists, internal medicine doctors and oncology nurse practitioners specialize in long term survivorship care. Patients are also seen for visits which were not preplanned if a problem or concern arises and should be comfortable making such appointments. It is important that the team involved with the patient‘s diagnosis and treatment continue to oversee the patient‘s long term monitoring for the rest of her life. This is part of quality care.
- Patients should expect to be offered ongoing education programs about breast cancer treatments, survivorship issues, new discoveries and the latest in clinical management.
These educational offerings should be provided on a continuous basis and patients in treatment as well as those who have completed treatment are encouraged to participate.
One of the strengths of our program is patient education. We believe that it is imperative that patients are empowered with information about their diagnosis, its treatment options and what are the important issues to continue to be informed about after treatment has been completed. Patients are provided educational information at the time of each clinic appointment and are offered the opportunity to attend an educational lecture series about topics of interest to them, including survivorship issues and clinical research discoveries.
There is also a special program offered for women when treatment is completed, called a survivor retreat, designed to help women re-engage in life physically and emotionally healthier than before. Throughout the year, educational programs are scheduled on specific topics of interest, such as, genetics, long term survivorship, coping with metastatic disease, nutrition and integrative medicine. Every month, Artemis, the electronic medical journal for breast cancer, is published free online. Subscribing to this information will keep you informed of the latest research studies.
- Patients should expect to be offered resources to help with image recovery.
These efforts should be targeted at improving and rebuilding self image and self esteem, which may change as a result of breast cancer treatment. The goal is to restore the patient’s health status, including their emotional well being.
There are some treatments whose side effects are unpreventable, such as hair loss and skin changes from some medications and body changes from surgical treatment. It is important to have available, as part of the patient‘s treatment plan, assistance with maintaining or restoring a woman‘s body image. Body image and self esteem are directly related to one another and affect a patient‘s overall emotional well being and her ability to cope with stress.
Through our Image Recovery Center, as well as networks with regional facilities, we provide several services to help address this need. Patients are referred to professionals trained in helping to restore one‘s image with proper prostheses fittings, wig fittings, makeup tips, skin care programs and nutritional programs all designed to improve a patient‘s self image.