In March I posted “Palliative Care Wants Electronic Health Records to Collect More Data (and re-direct patients into palliative care).”
Here is more evidence.
In this 2012 video, Dr. Susan Block, a prominent Harvard palliative care activist, explains that the health system should use the electronic medical record (EMR) “not as a repository of information, but… as a tool for guiding clinicians toward best practices.”
Dr. Susan Block (right), former board member for George Soros's Project on Death in America, and Dr. Sydney Dy of Johns Hopkins Bloomberg School of Public Health, at the 8th Annual Chicago Supportive Oncology Conference in October, 2012.But wait! Medical records should be repositories. Do we really want pro-active medical record systems, guiding our doctors and nurses? Isn’t that the tail wagging the dog? And to whose “best practices” will they guide us?
These folks also suggest that the medical records should be used in the aggregate as research data to quantify “outcomes.” They need an objective, first-hand report on experiencing death, and that is problematic:
We had no outcomes related to the patient’s end-of-life experience, either from their perspective or the family’s perspective.
In other words, they still haven’t figured out how to do that post-death interview. So, really, how reliable is their data on “a good death”?
Following is an unofficial transcript of Dr. Block’s comments:
Dr. Block (0:36):
I think the idea of using the EMR not as a repository of information but in a way as a tool for guiding clinicians toward best practices is really an important idea; and we’ve done a lot work in our system in developing what we call an “advance care planning module” for our electronic health record which has all of the kind of critical elements that are relevant to doing palliative care planning, end-of-life planning; and we’ve actually aligned it with what we’re doing on a serious illness communication checklist to structure the kinds of conversations we think represent best practices for “non-palliative care experts” to be having with their patients around end-of-life planning.
Dr. Block (2:34):
I think the other question about measurement of quality goes back to the idea: are we measuring quality for research purposes, or are we measuring it for the purpose of quality improvement? And, in our Partners Health System we have now created an End-of-Life Care Dashboard that we’re tracking across all of our hospitals; not just our palliative care programs, where we are measuring kind of key elements and reporting them that we think are good quality indicators for end-of-life care including things like hospice utilization, advance.. uh.. presence of advance-care-planning documentation in medical record; hospital days; a whole bunch of different kind of parameters. One of the things that has been fascinating about that is that, uh, is how hard it is to get that data, and get comparable data, and to really know what we have. And so we’re now on version 2 of this Quality Dashboard, and uh ya know we’re still trying to kind of refine the measurement and [?] and “what’s the denominator?” is one of our big questions. Who should we be included in this, you know, representation of quality of palliative care? So it’s also spurred a lot of change in our system to have this dashboard. One of the things that rose to the forefront was the fact that we had no outcomes related to the patient’s end-of-life experience either from their perspective or the family’s perspective, and so we’re just completed a whole process of developing a family survey of their perceptions of quality, it’s now to be integrated into the dashboard ..