Quality of Death Equals Quality of Care

Now that Medicare is paying for end-of-life care discussions with patients and families, we are finally beginning to acknowledge that a high quality death should be part of high quality care.

Let's talk about dying.

The much-needed conversation about end-of-life care was interrupted six years ago during the debate over the Patient Protection and Affordable Care Act when conservatives targeted a proposal that would have allowed providers to bill Medicare for hospice and palliative care planning.

Critics of the bill made it sound like there would be committees of doctors deciding which patients should continue to receive life-extending care and which should not.

This year, Medicare will cover "advance care planning" and so far, the term "death panel" hasn't resurfaced with any force. The conversation about end-of-life care is today more lively than ever, thanks to the growing ranks of baby boomers for whom it is a topic of increasingly inevitable interest.

Recognizing this shift, in 2014, the Institute of Medicine issued a report on the subject. That year, surgeon and author Atul Gawande, MD, wrote a popular book on the subject, and this month, the editors of Journal of the American Medical Association devoted the better part of the January 19 issue to the topic.

One important facet of the conversation centers around quality of life versus length of life. It's an uncomfortable fact that even though most people say they would prefer to die at home, many take their last breaths in a hospital.

In 1980, 70% of US cancer patient died in the hospitals. In 1998 the number had dropped to 37%.  One of the JAMA studies traces the downward trend of inpatient cancer deaths and found that the number dropped further—22% of cancer patients died in the hospital.

Dying at home in your own bed, surrounded by family sounds much better than dying in an ICU. But the numbers mask evidence of excessive end-of-life care that fails to benefit patients, families, hospitals, or the health system.

Cancer patients in US hospitals were much more likely to spend time in the ICU in the last three months of life than those in six other countries the JAMA study investigated. US patients were also more likely to receive chemotherapy at the end of life.

Carol Spence is vice president for research and quality at the National Hospice and Palliative Care Organization. She says that patients are coming into hospice after long-shot treatments have failed. Some don't survive more than three days, which is not enough time to set up needed network of hospice services.

"This [study] says that we are getting peoples straight from ICUs who are very, very sick, who don't have well-controlled symptoms, who are trying very, very aggressive care." Spence told me.

"That care, in some cases, exacerbated or created new symptoms." When the approach seems to be failing, they end up in hospice, but don't last long, she says.

Understanding Hospice
Thomas Smith, MD, is the director of palliative medicine at Johns Hopkins Medicine in Baltimore and is active on this issue with the American Society of Clinical Oncologists.

He agrees that using hospice services for fewer than three to seven days is a sign of suboptimal care.

He says the shift to at-home deaths has been accompanied by more end-of-life inpatient care, "followed by abrupt discharge to home and then death." So, for health professionals, patients, and families it is as important to talk about dying as it is unpleasant.

Death is often unpredictable, but sometimes it isn't. Doctors knows the progressions of terminal lung, pancreatic, or breast cancer. And, in those cases, a hospice planning visit with providers trained in end-of-life care is in order, Smith says.

He usually hears a gasp when he mentions the word "hospice" to a patient, who will then ask 'Does that mean I'm going to die?' Rather than saying, 'Oh no, that's not what I meant,' Smith says it is better to tell a patient he or she is not dying immediately, but that it's important to talk about a prognosis.

"We should also talk about having a system in place to help you live as long and as well as possible," Smith says he tells patients. "That's why I'm having this hospice information visit. So when it comes time for hospice, you know what it is and you know who is taking care of you so it can be an orderly transition."

Enough with the Heroics
In the age of engaged patients and evidence-based medicine, we should be able to resist the reflex to think that more care is better care, even in our most desperate moments.

It might also help to stop casting cancer as some heroic battle patients (and doctors) can win if they fight hard enough.

Put another way—and I don't think it's crass—there's money to be saved: As the data from randomized trails accumulates, results suggest that improved palliative care cuts costs and reduces readmission rates. Need a place to start? JAMA has research on evidence-based ICU care for terminal patients.

Bottom line: A high quality death should be part of high quality care.