Quite often I am asked what constitutes “good” oncology care. Many people have their opinions; patients, doctors, allied medical professionals, and even health plan administrators like to weigh in on this issue. Those in the industry often use buzzwords—eg, quality, outcomes, and cost—interchangeably, but are they really the same? Unfortunately, no one seems to be in agreement on the answer. Most healthcare professionals know that good oncology care is essential, but without a set of unified standards or distinct definitions on how to measure good care, it is almost impossible for everyone to speak the same language.
We must then ask ourselves, “What is our benchmark?” Should we turn to medical terminology—overall survival, time to recurrence, and response—in order to standardize our language? Perhaps the cost of a drug versus total treatment should be considered, and, consequently, whether we can demonstrate any savings in this analysis? In this ever-changing world of healthcare, where so many of the services we provide are guided by a bottom line, would it be prudent to teach more self-management skills to patients and families, such as how to monitor tumor markers and laboratory results, so they can ascertain the effectiveness of their treatment?
A defining element of good care may also come in the form of a standardized care plan that allows patients to stay in their homes rather than in the hospital, or helps to maintain their health during and after treatment, maximizing patients’ time in normal pursuits, such as work and family experiences. Yet often we must also assist with end-of-life care (ie, helping patients and families determine whether a clinical trial, palliative care, or hospice care would provide the greatest quality of life).
After surveying available data on this subject of good, quality care, one of the key problems I have seen is that the medical profession has a set of criteria, payers may have another, and, subsequently, patients and patient advocacy groups may have yet another set of criteria. This separation begs the question: If we are all attempting to provide what is best for the patient, how do we blend these criteria together so that they make sense, not just for us, but for our patients and their families?
A close review of the literature identifies organizations responsible for creating standards for oncology care, as well as those that monitor these standards to make certain they are given appropriate attention. Speaking with colleagues, practicing oncologists, oncology care management nurses, medical directors from health plans, and those working in cancer education and advocacy also provides insights into standards of care. Finally, in order to round out the analysis, one should speak with patients and families to see how they measure quality care. Recent literature and Internet research demonstrated some of the following findings.
On its website, the Susan G. Komen Foundation for Breast Cancer states, “Every person diagnosed with breast cancer deserves the best care possible. Quality of care is a measure of how well your breast cancer is treated [and] how well you are cared for during and after treatment.”1
The Institute of Medicine (IOM) defines quality healthcare as “The degree to which health services for individuals and populations increase the likelihood of desired health outcomes and are consistent with current professional knowledge.”2 IOM advises that a quality hospital or medical center should have clean, up-to-date facilities; well-stocked examination and operating rooms; up-to-date diagnostic equipment; and healthcare providers with appropriate professional credentials.
In an April 1999 IOM report, “Ensuring Quality Cancer Care,” the National Cancer Policy Board suggested that many patients with cancer are not receiving the care known to be effective for their disease. The board believed the problem to be significant, but observed there was insufficient evidence to determine the true magnitude.3
Organizations such as the American Society of Clinical Oncology (ASCO) recognize the importance of integrating continuous quality improvement into patient-centered clinical practice; it has collaborated with the world’s leading cancer care experts to develop 2 key quality programs: the Quality Oncology Practice Initiative (QOPI) and the QOPI Certification Program.4 These tools assist oncologists and their practice in creating programs that effectively measure and compare their care with other practices in a continuous and meaningful way.
The Association of Community Cancer Centers (ACCC) is working with advocacy organizations, such as the Oncology Nursing Society (ONS), the American Cancer Society Cancer Action Network, and others, to increase support for ensuring good, quality oncology care. These actions are evident by the introduction of 2 bills in 2013. The first, H.R. 1661, Improving Cancer Treatment Education Act of 2013, would provide reimbursement for a 1-hour chemotherapy nurse-led teaching session in the physician office setting.5 This legislation has been introduced in previous Congresses, with support from ONS and ACCC. The second bill is the Patient Centered Quality Care for Life Act (H.R. 1666).6 This bill would support the growing demand for palliative care, which is specialized medical care that focuses on care coordination and relief from pain, stress, and other symptoms of treatment for a life-threatening disease, such as cancer. This bipartisan bill would facilitate and expand federal research into palliative care, and support training for nurses, nurse practitioners, and other allied health professionals to effectively practice palliative care.
Oncology nurses, care managers, and alike believe that good oncology care is related to early detection, early and accurate diagnosis, and timely implementation of accurate first-line treatment, followed by proper monitoring of tumor markers for treatment adjustments and proactive control of side effects, as well as strong patient advocacy for palliative and end-of-life care when appropriate. Subsequently, they focus on the patient’s physical, emotional, and social needs being met early on in the process and throughout. Oncology professionals who manage, treat, and educate patients and families measure good care based on the patient’s ability to continue to function in daily routines, including work and family life.
As I have spoken with physician colleagues throughout the United States, in my daily work as an oncology care manager, as a moderator at regional and national meetings, and as an educator and presenter, the feedback I have received from physicians indicates that their focus has been on cost and efficiency. That focus seems to be driven by the necessity of serving dual roles as physicians and business owners. Another key factor in this conundrum is the healthcare reimbursement system. While physicians want to do what is best for their patients and patients’ families, sometimes they may be influenced by the wrong incentives.
In my conversations with health plan medical directors in the same forums as stated above, it appears they are looking for ways to cut costs and be effective, but also to partner with community oncologists and their practices. We have discussed their ideas and thoughts around the oncology patient-centered medical home and how that may work to improve care as well as cost. The ideas include giving more control of patient care and management back to the oncologist, but also requesting assurances based on the use of treatment guidelines, clinical trials, and strong oncology care management that patients and their needs remain at the center of care and treatment plans.
Finally, I have spoken extensively with patients, their families, and other caregivers, and their focus is much different from that of the oncology patient-centered medical home. They view good cancer care as whether the patient or family member was diagnosed correctly and given the right treatment the first time, how rapidly their social and emotional needs were met, and the type of experience they had moving a family member to palliative care or hospice.
Most national organizations do their best to manage the process, place tools in the hands of practicing oncologists and their teams, and promote the best care possible for patients and their families. However, I am still concerned that they have lost sight of what the patient’s care expectations are, and how the patient gauges good care. Quite often, the focus is on the diagnosis, which is important, but in doing so we forget to ask patients what their goals and expectations are in the process of treating their cancer. For us to truly measure good care, we need to make certain that we address our patients’ needs in the beginning, and continue to reassess and reevaluate their needs throughout the process.
The collective oncology community must work together more closely and begin to gather and assess patients’ expectations of care; this information has been lacking in our quality metrics. Just as we set goals for our patients, we should make our primary goal asking the patient, “What are your expectations through your treatment process?” In doing so, we may be surprised at some of the answers, and, subsequently, how that may affect the treatment path followed. By making this step part of the workflow and operational process, we will have the missing information needed to measure good oncology care and treatment. Without this information, we may never reach this goal in patients’ eyes, and they are the ones who matter the most.
1. Susan G. Komen. What is Quality of Care (Good Care)? ww5.komen.org/BreastCancer/WhatisGoodCare.html. Updated March 24, 2014. Accessed April 20, 2014.
2. US Department of Health & Human Services, Health Resources and Services Administration. What is Quality? http://www.hrsa.gov/healthit/toolbox/HealthITAdoptiontoolbox/QualityImprovement/whatisquality.html. Accessed April 30, 2014.
3. National Cancer Policy Board, Institute of Medicine and Commission on Life Sciences, National Research Council. Summary. In: Hewitt M, Simone JV, eds. Ensuring Quality Cancer Care. Washington, DC: The National Academies Press, 1999:1-12. http://books.nap.edu/openbook.php?record_id=6467&page=1. Accessed April 30, 2014.
4. American Society of Clinical Oncology. Guidelines. http://www.asco.org/quality-guidelines/guidelines. Accessed April 30, 2014.
5. Library of Congress. H.R.1661 - Improving Cancer Treatment Education Act of 2013. http://beta.congress.gov bill/113th-congress/house-bill/1661. Accessed April 30, 2014.
6. Library of Congress. H.R.1666 - Patient Centered Quality Care for Life Act. http://beta.congress.gov/bill/ 113th-congress/house-bill/1666. Accessed April 30, 2014.