Monday, August 18, 2008
Journal of Clinical Oncology recently devoted an entire issue to supportive and palliative cancer care (table of contents for the entire issue here). It is mostly a series of review articles about measuring and improving the quality of supportive/palliative & end of life care for cancer patients.
I wanted to highlight one paper in particular, about the use of aggressiveness of care at the end of life as a quality measure. This is an issue we've discussed before on the blog (most recently here). The current paper is written by some of the researchers who helped develop/define the concept in a research sense (i.e. how to measure 'aggressiveness' of care at the end of life - proportion of patients who initiate a new chemotherapy regimen within the last month of life, proportion of patients whose hospice lengths of stay are less than 3 days, those sorts of things) and the paper is a summary of their work and an overview of the field as a whole.
I was most interested in their discussion of the validity of these measures: are they actually reasonable quality measures? This is what they had to say:
To explore the validity of the measures, we sought to relate each of our measures to the outcome of family members’ satisfaction with quality of care near the end of life. We have examined data from a prospective cohort study looking at patient and family needs among women with hormone-refractory metastatic breast cancer treated at two Canadian regional cancer centers, and limited analysis to the patients who died during follow-up. Family members were asked to complete the FAMCARE instrument within 2 weeks of patient death. FAMCARE is a 20-question survey that asks about satisfaction with symptom control, psychosocial care, information provision, and availability of providers. Among 51 consecutive women who died and had a caregiver complete the FAMCARE instrument, there were trends toward less satisfaction with care when chemotherapy was continued within 14 days of death, death occurred in an acute care setting, or there was no or only a short ( 3 day) hospice involvement. These did not reach statistical significance, however, perhaps because of the small sample size. Interestingly, variability in scores appeared to be mostly driven by the "information giving" and "physical care" subscales of the FAMCARE instrument, suggesting that inadequate communication and symptom management may be associated with aggressive anticancer treatment. A larger validation study is underway in the National Cancer Institute–funded Cancer Care Outcomes Research and Surveillance (CanCORS) consortium comparing these measures with patient and family assessments of the overall quality of care patients with lung or colorectal cancer receive before death.Well, I guess we'll look forward to the CanCORS results then. It of course seems intuitive that increased aggressiveness of care at the end of life for cancer patients is an indicator of 'poor' quality of care, but there are patients/families who would disagree with that, as well as some patients for whom treatment decisions to be 'aggressive' made sense/were appropriate at the time they were made despite the eventual 'poor outcome' and so defining the proportion of patients for whom aggressive care in the last month of life is inappropriate is going to be tough (10% emergency room visits in the last month good, 20% bad?).
Along these lines, death in an acute care setting is often proposed as a quality measure (increased hospital death implying worse care). One of the problems here is that rates of hospice use vary dramatically and at least partially by geography and hospice availability and I'm assuming that access to inpatient hospice facilities/hospice units is distributed unevenly as well. Given that, there are likely a certain number of dying patients for whom dying in the hospital is absolutely the best place to be (to get symptoms managed etc.). Higher rates of hospital deaths then may reflect more of a lack of access to hospice units (so it's a quality failure regarding equity in access to hospice care but not, for instance, a failure on the part of the patient's doctors/caregivers). In a general sense I'm sure higher rates of hospital deaths aren't a good thing, but the problem with quality measures is that once you create them people (e.g. Medicare, other payors, the JC, etc.) start using them (pay for performance etc.) with unintended consequences.
Anyway, it appears I began to ramble, and none of this is to suggest that this shouldn't be carefully investigated, and it's exciting to look at how people have operationalized this concept, and perhaps the CanCORS study will continue to clarify things.