End of Life Discussions: Too Late and Still Too Infrequent

Today’s Managing Health Care Costs Indicator is 73%

Site of End of Life Discussions
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We know end of life care is responsible for an outsize portion of the total medical budget. Many people express a desire to avoid extensive intervention at the end of their lives; nonetheless, a majority of Americans die in hospitals, and there is unbearable variation in how Americans are cared for at the end of life.

Medicare spends about a quarter of all of its dollars on patients in the last six months of their lives.   For most deaths, though, we don’t know in advance exactly when the clock starts ticking on that last six months.    However, those who have Stage 4 metastatic lung and colon cancer have median survivals of 4-8 months and 12-24 months. 

Even in those with diseases known to be associated with high likelihood of early death, there is huge opportunity to improve physician discussion with patients about their preferences for end of life (EOL) care.

This week’s Annals Of Internal Medicine has a painstaking study of end-of-life care discussions with over 2100 patients with end stage lung or colon cancer. The results are not as disheartening as some past studies – and almost three quarters of all patients had either a conversation reported by the patient (or family member) or a conversation documented in the medical record.   The research did not grade the meaningfulness of this conversation, and interviews focused on resuscitation and hospice care only, while record review also included venue for dying and palliative care

The results aren’t pretty

·       64% of patients (or surrogates) reported a conversation with a physician on end of life care preferences; 58% of medical records reported such a conversation.  The concordance rate was 65% - and the authors state that most of the discordant cases involved lack of medical record documentation of the end of life care conversation. 
·       Most of the end of life conversations (64%) happened in the hospital.  Even general physicians had these end-of –life discussions in the hospital 73% of the time.  This means these conversations were likely when the patient had  an acute deterioration.  It also means that few of these discussions were between t he long-time primary care physician and the patient, as many are now cared for by hospitalists.
·       Most of these discussions happened in the final weeks of life.  The first discussion took place a median of 33 days before death among those with documented EOL discussion who died during the study.  Even among those whose cancers were diagnosed over 12 months before their deaths, 29% of patients who had a discussion had this within 30 days of their deaths.

There are real social and cultural reasons why we delay talking to patients about their EOL preferences. As physicians we want  to promote hope, and as human beings we are optimistic.  But the cost of our reticence is that many get care which they want to avoid, at a very high cost.   The debate in 2010 around  “death panels” doesn’t make this issue any easier.  Lead author Jennifer Mack and her colleagues have given us good evidence that we have to improve our capacity to talk frankly about end of life with our patients.

This issue of the Annals also has an interesting survey showing that physicians are highly likely to order inappropriate screening tests for ovarian cancer.   More on that in a future post.