What cancer patients want and what Medicare covers may differ

NEW YORK (Reuters Health) - When asked what Medicare should cover for cancer patients in their last months of life, many patients and their caregivers choose benefits the federal insurance does not offer, like home-based long term care and concurrent palliative care, according to a new study based on interviews.

Given an array of options, a limited budget and a chance to discuss the choices, patients and caregivers were not very likely to devote all coverage to curative cancer treatment, said lead author Donald H. Taylor Jr, of the Sanford School of Public Policy at Duke University in Durham, North Carolina.

“It is important to not over-interpret our results, because they were obtained in a hypothetical context, meaning the choices stated did not impact the actual care they received,” Taylor told Reuters Health by email.

Medicare covers what it defines as “reasonable and necessary care” and its standards have come to guide what private insurers are willing to pay for as well, Taylor and his colleagues write in the Journal of Clinical Oncology. As Medicare spending is targeted by federal cost cutting, the risk that patient choices will be narrowed increases, they write.

To gauge what cancer patients most want from Medicare coverage, the researchers gathered more than 400 participants who were either Medicare beneficiaries over age 65 undergoing treatment for cancer, had recently been treated for cancer or were helping to care for a cancer patient on Medicare.

Of the 194 caregivers, most were spouses of cancer patients. Half of the patients reported spending more than $2,000 out of pocket on medical care over the previous year.

The participants met in small groups for a 2.5 hour session that included going over educational materials about Medicare benefit categories, individually choosing benefit categories and discussing as a group what benefits should be covered.

Each person was given a circular game board and 50 stickers to allocate between 15 benefit categories, some of which are not covered by Medicare. The number of stickers given to each benefit category indicated the level of care the patient or caregiver wanted for that benefit.

Some of the covered benefit categories were cancer therapy and primary care, while cash payments, home-based long term care and “concurrent” palliative care that’s integrated into cancer treatment were options that are not covered by Medicare.

The researchers estimated that Medicare pays out about $35,000 for a cancer patient over the last six months of life. Divided into 50 units, that meant that one sticker on the board represented $700 of coverage.

Almost everyone allocated coverage to cancer care itself, usually an intermediate or high level of care, and most also chose primary care and prescription drug coverage, which are covered by Medicare.

More than 80 percent of participants also chose palliative care, home care and nursing home care. Only 12 percent chose the maximum amount of cancer care.

Around half of the group also chose some level of unrestricted cash, home-based long term care services or concurrent palliative care, which is beyond the current hospice benefits covered by Medicare. People who chose these categories allocated up to 30 percent of their hypothetical budget to them, the researchers note.

“We placed participants under a serious resource constraint,” Taylor said. “So, when around half of participants choose some level of unrestricted cash, they are not simply saying ‘I would like some money.’ Instead, they are saying ‘I will take less health care in order to get unrestricted cash.”

Currently, Medicare covers curative cancer treatment and hospice care, but not at the same time. Many participants in this study would choose concurrent palliative care which may indicate that system should change, he said.

“The existing bright line ‘curative v. hospice’ choice that currently exists in Medicare I think does need to be changed toward a concurrent palliative care model,” he said.

Other options, like cash benefits, were more outlandish and speculative, Taylor said.

“Unrestricted cash seems very unlikely, while concurrent palliative care seems quite likely to be covered within the next few years,” he said.

It makes sense that people would want palliative and long term care, said Peter Neumann, professor of medicine at the Sackler School of Graduate Biomedical Sciences at Tufts University in Boston. Neumann was not part of the new study.

“It’s a very interesting exercise to ask people the kinds of benefits they want and compare it to what exists,” Neumann told Reuters Health.

“Medicare can’t cover everything,” he said. “To change the law to cover more long term care, for example, would be a big change.”

Traditionally, Medicare has covered non-experimental medical care, but custodial services and long-term care have not been covered because they are not “medical care,” Taylor said.

“If we moved toward focusing on quality of life improvements, then long term care would likely rise as well, certainly as compared to many health care options for which the evidence of benefit is quite low, while the cost is quite high,” Taylor said.

SOURCE: Journal of Clinical Oncology, online August 25, 2014.