Once again, the folks at the Dartmouth Atlas Project have pointed to an elephant in the room. There the beast sits—the enormous amount of far too aggressive, painful, costly and often futile care, which too many doctors and hospitals provide during a Medicare patient's last 14 or 30 days of life.
The Dartmouth team's report, entitled Quality of End-of-Life Cancer Care for Medicare Beneficiaries: Regional and Hospital-Specific Analyses, shows the wide, and hard to explain, variation across the country in care provided in the last month or two weeks of a patients life. Its data tables look at cancer care practices within regional referral networks and specific hospitals for 235,821 end-stage cancer patients who died between 2003 and 2007.
The Atlas shows that this aggressive care was provided to patients whose type and stage of cancer predicted extremely poor prognosis, even for the short-term, and for whom such care is likely futile. Cancers like pancreatic, lung, and some types of leukemia and lymphoma were included in the analysis.
This is care that many patients would reject if they were told the truth: that there is very low probability their time spent in a hospital—often in an intensive care unit—will increase their number of days, the authors say.
In some cases, aggressive treatment with chemotherapy, endotracheal intubation, feeding tube placement and cardiopulmonary resuscitation, can hasten death, or at least severely weaken the patient and limit their ability to communicate with loved ones in the time when that's of greatest importance.
Is this what some might truly want? Some, perhaps. But for others, decidely not.
But in many parts of the country patients are much less likely to hear about the negative ramifications of extended treatment before they and their families make a decision about their care, the report shows.
At a forum to discuss the report Tuesday, David Goodman, MD, lead author and co-principal investigator, said that what these patients need are hospice and palliative care services that allow those last few days to be as pain-free as possible, perhaps in the comfort of a patient's own home, surrounded by family and friends and family. But here again there is huge variation in when and what kinds of hospice services they are provided.
Goodman suggested this is because far too often the decisions of what care services to invest in are driven more by reimbursement than by what's best for the patient. That because, he speculates, Medicare pays a lot less for hospice care than it does for curative care.
These palliative programs are such that "many institutions are concerned that these are going to be cost centers that will lose money," Goodman said.
"Considering that the payment for palliative care and hospice care is much less than it is for more aggressive care, including chemotherapy and procedures and such, so these places feel often that the reimbursement system isn't in their favor," he said.
But hospitals need to be part of community-based efforts to build that capacity, he added.
He added that it's also true that for some doctors, not offering something in those last few days is tantamount to giving up hope, which isn't in their culture. "That's language that's caused a lot of harm in cancer care," he said.
I know this from first hand experience, but that's a tale for another time.
The cancer report's numerous tables beg these questions about the wide variability in end-of-life care.
Why are 63.6% of cancer patients in Elgin, IL seeing 10 or more physicians during their last six months of life, when in Idaho Falls it's only 14.3%.
In a question and answer session on Tuesday, Goodman was asked if there might be some justifiable reasons for these variations.
For example, there may be:
- regional differences in patients' desire for aggressive treatment at the end
- some hospital teams that don't feel their patients' last days can be safely managed at home
- no palliative or hospice care resources in their communities
And it might be that these statistics capture a large percentage of patients who were recently diagnosed, and for whom the futility of care needs time to sink in for both family members and the patients.
Or, for instance, if the patients has dementia, this may not be their decision at all, but may entirely rest with a family member, the doctor, or even a conservator, who may not want to give up care under any circumstances.
While that may have justification in some parts of the country, Goodman says that there's little evidence to suggest that such factors caused such dramatic pivots in the data from one region of the country to the next, or from one hospital system to another.
The Dartmouth Atlas Project's latest work points to the elephant for what it is, and may tilt the discussion about what really is a good use of precious healthcare dollars, just as its work two years ago paved the way for many provisions now embedded in the Affordable Care Act.
Now that this release has put the spotlight on end-of-life treatment and care, I'm hoping these glaring disparities in how quality of care is provided can begin to be addressed by all providers.
We're not talking about letting grandma die here; we're talking about allowing her to have a death with dignity. That death includes care that's high-quality, and helps her maintain a high level of functionality, and one that many of these Medicare patients probably didn't get.