Study sees increase in hospice care, but communication issues remain
The use of palliative and hospice care has increased nationwide, according to a report from the Dartmouth Atlas Project, but there is still a disconnect between what patients want for end-of-life care and what kind of care they get.
In addition, the lead author of the report says the healthcare system as a whole – and doctors in particular – must find better ways of communicating with patients about end-of-life care.
“In addition to its effects on patients’ quality of life, unnecessarily aggressive care carries a high financial cost,” said David Goodman, MD, in a statement introducing the study. “About one-fourth of all Medicare spending goes to pay for the care of patients in their last year of life, and much of the growth in Medicare spending is the result of the high cost of treating chronic disease. It may be possible to reduce spending, while also improving the quality of care, by ensuring that patient preferences are more closely followed.”
The report, “Trends and Variations in End-of-Life Care for Medicare Beneficiaries with Severe Chronic Illness,” found that while Medicare beneficiaries with severe chronic illness spent fewer days in the hospital at the end of life in 2007 than they did in 2003, they saw more doctors and specialists and spent more time in intensive care units. The study also determined that the aggressiveness of care depended greatly on the region of the country and the healthcare system.
On average, Goodman said, patients who are approaching death prefer a home-like environment and spending time with their families to a clinical environment, surrounded by medical specialists and lots of equipment.
However, he said, the nation's healthcare system favors resources in which it has invested considerable money, rather than less-expensive options.
“The healthcare industry and systems in this country have preferentially made great investments in ICU capacity, for example,” Goodman said. “So while there are reasons for those investment patterns, we have to recognize that they are very problematic and they leave us with a legacy of infrastructure that’s not well suited for what most patients want.”
Many people have a difficult time talking about their own death, said Ken Farbstein, author of “Getting Your Best Health Care: Real-World Stories for Patient Empowerment” and an expert in patient-centered design. In addition, he said, doctors may find it difficult to recommend hospice over aggressive treatment because they are trained to save lives and prolong life.
“The outcomes of care are death for a terminally ill person, of course, so the normal logic of care is turned on its head,” said Farbstein, whose father spent his last days in hospice care with Parkinson's disease. “So compassion and empathy and warmth and understanding and dignity – those become the paramount values.”
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“We recommend the best treatment, the best choice,” said Goodman. “It is, however, the antithesis of ... what actually serves patients well. It makes a lot of assumptions.”
Chief among those assumptions is that doctors know their patients’ values and preferences. “Even if we know patients’ average preferences, that should not be the norm," he added. "What we need is communication with patients that is able to inform and understand whatever the patients’ preferences are and then follow through on them.”
“Any model of care really needs to accommodate and many (models) do accommodate the full range of preferences that patients have,” Goodman said. “At the end of the day it’s great to know that better care generally costs less.”
