Hospice CAHPS: Understanding What Patients and Families Need

Added on Dec 10, 2014

In its description of the FY2015 Hospice Payment and Policy changes, CMS wrote: “Our expectation continues to be that hospices offer and provide comprehensive, virtually all-inclusive care, and in a better, more humane way, than is available in other healthcare settings.” 

Though not the intent, this statement implies that compassionate care is only required as a matter of course in hospice settings. It’s an uncomfortable thought, but on some level it’s true.

“In the past, when there was little in the way of real technology or specialized options for treatment, much of caring for patients was really caring about them,” said Deirde Mylod, PhD, senior vice president of Research and Analytics at Press Ganey and executive director of the Institute for Innovation. “Doctors might not have been able to cure them, or had limited tools, but the care often took place in their own homes, and much of nursing and physician care was more supportive.”

With advances in science and technology, “there are more things we can treat—and sometimes the treatment has its own set of trade-offs, such as side effects, disability, inconvenience, fear and pain,” Mylod explained.  “Further, more advances means more specialized care in more intense settings with more people involved. This makes care delivery more complex and potentially chaotic, and it sometimes means less personal care.” 

Many of the tools or options that did not exist in the past are what cure disease or prolong life today, Mylod explained. “There is a mindset that the pain, discomfort, side effects and complexity of using these options are worth the potential for cure or treatment. For example, brain surgery might create pain, side effects and lengthy rehab, but is an acceptable tradeoff if we are successful in removing a tumor that could kill or disable you,” she said. “And the system, in an effort to keep costs down has organized itself around how to provide that brain surgery in the most efficient manner given the current reimbursement structure—which may not be the same thing as organizing around the needs of the patient.”

The extension of CAHPS into the hospice space shines a spotlight on this potential disconnect in the provision of end-of-life care. It also serves as a call-to-action to consider what patients and families want and need when determining the nature of the care they will receive.

“Certainly, care should be humane all the time, but the end-of -life scenario more immediately puts the trade-offs in front of us,” according to Mylod. “We’ve continued to assume that if a treatment will give longer life or better quality, then maybe it’s okay if it hurts, or has side effects, or is delivered in a manner that might be efficient for the system, but not for the patient,” she said. 

“What we are coming around to with the idea of preventing avoidable suffering is reexamining whether the treatment will truly have a benefit to the patient in terms of giving them better quality of life,” Mylod explained. “It also means we need to reexamine the process by which we provide care and question whether the process is optimized for the patient, not just the system.” 

In situations where curative treatment is not the right option, Mylod said, “we need to focus on using technology and advances for palliative efforts and de-institutionalizing end-of-life care to the greatest extent possible.”