Should oncology practices be required to publicly report measures of end-of-life care intensity?
Click here to read the Cover Story, “Aggressive end-of-life care: A disservice to patients.”
First, one needs to be comfortable divulging outcome and process results. Clinicians traditionally have not done this. Cardiothoracic surgeons decided to publish their results, and it is said that outcomes improved and, at the least, consumers could compare results and make decisions based on them. People should be responsible for what they do, and shining a bright light on a clinician’s style of practice and their outcomes is appropriate. Most people have a manager to whom they are responsible. Clinicians typically have not been in this position, but they ought to be. From this standpoint, I am comfortable divulging measures of intensity of end-of-life care I provide.
Quality measurements should be chosen to accurately reflect what goes on in an oncology practice, because practices will vary in terms of intensity of end-of-life care. For instance, I suspect that patients who are seen at a university practice would be more motivated to be treated and, therefore, receive more care. My colleagues and I tried to measure the quality of care in oncology with ASCO’s Quality Oncology Practice Initiative (QOPI) Certification Program. Through the QOPI program, oncologists can achieve certification by demonstrating practices consistent with the highest standards of care. I have always considered key measures of quality care to include the percentage of my patients who die in the hospital, in the ICU or on a ventilator. The number of regimens a patient receives in the last month of life also would be of interest.
To quote Upton Sinclair, “It is difficult to get a man to understand something when his salary depends upon him not understanding it.” Our responsibility is to our patients and their families. Selling chemotherapy is a profitable endeavor, but providing care that is appropriate is our professional responsibility.
Earle CC, et al. J Clin Oncol. 2008;doi:10.1200/JCO.2007.15.8253.
Peter D. Eisenberg, MD, FACP, FASCO, is an oncologist at Marin General Hospital. He can be reached at firstname.lastname@example.org. Disclosure: Eisenberg reports no relevant financial disclosures.
We believe that transparency in reporting the intensity of end-of-life care is a worthwhile goal. The question, however, is whether we are ready to do so.
There are not yet valid, universally agreed upon measures to accurately and reproducibly assess intensity of end-of-life care across diseases. The risk of prematurely using surrogate measures, applied collectively to all diagnoses, to define nonbeneficial care at end of life is significant, creating bias and confusion that could affect patient and clinician decision-making.
Luta and colleagues conducted a systematic review of 58 studies that described measures of intensity of end-of-life care published between 1990 and 2014. Only four studies included information on validation of the measures used. None included construct validity, three considered criterion, and one study reported both content and criterion validity. The authors of this review concluded, “There is no consensus on the definition of intensity of end-of-life care.” The difficulty, in part, lies in trying to define the end phase of life and recognizing that there is no accurate way to predict the exact time of death. “The associated measures are seldom validated and used for varying aims,” the researchers wrote.
Further, surrogate endpoints often do not accurately assess the appropriateness of the care rendered. Beneficial and nonbeneficial care at end of life is incredibly different for a patient with chronic obstructive pulmonary disease vs. pancreatic cancer. Measures need to be disease specific to ensure accuracy.
The studies to date primarily report retrospective cohort administrative data, which may be more generalizable across groups, but raise questions of data validity. Critics argue for collection of prospective data to be truly accurate and valid.
In conclusion, more valid prospective data is needed prior to mandating transparent reporting of what will eventually be necessary information to help patients, caregivers and clinicians make appropriate decisions about end-of-life care.
Luta X, et al. PLoS One. 2015;doi:10.1371/journal.pone.0123764.
Andrew Chapman, DO, is chief of cancer services at Jefferson Health and co-director of the Jefferson Senior Adult Oncology Center at Sidney Kimmel Cancer Center. He can be reached at email@example.com. Disclosure: Chapman reports no relevant financial disclosures.
Brooke Worster, MD, FACP, is associate professor of medicine and medical director at Neu Center for Supportive Medicine and Cancer Survivorship at Jefferson Health. She can be reached at firstname.lastname@example.org. Disclosure: Worster reports no relevant financial disclosures.