For more than 30 years, Medicare presented dying patients with a stark choice: They could continue treatments that might extend their lives or they could accept the medical and counseling services of hospice care meant to ease their way to death. They could not do both.
Now, the federal government is experimenting with a change that would remove that either/or proposition. Beginning next year, people choosing to participate in a demonstration project will be able to receive Medicare hospice benefits while continuing treatment for the diseases that are killing them.
If the experiment is deemed a success — by drawing more people into hospice, increasing the satisfaction of patients and their families, and reducing end-of-life costs — it probably will lead to a similar shift by private insurers and by Medicaid, the joint federal-state health insurance program for the poor.
“It’s quite a big deal because right now a lot of people choose not to undergo hospice care because they believe they have to forgo something,” said James Tulsky, incoming chairman of the Department of Psychosocial Oncology and Palliative Care at the Dana-Farber Cancer Institute in Boston. “People are understandably reluctant to do so, even if those therapies are not all that effective.”
Nearly 30 percent of Medicare’s $600 billion annual budget is spent on treatment in the last six months of life, much of it on expensive interventions with limited benefits. Without changes, the cost of end-of-life care is likely to skyrocket as the nation’s elderly population grows.
Medicare — the federal health insurance system that covers people 65 and older and those with certain disabilities — is by far the largest payer of hospice services in the United States. A report by the nonprofit National Hospice and Palliative Care Organization found that in 2009, Medicare reimbursed 83.9 percent of all hospice services. By contrast, Medicaid reimbursed about 4.9 percent and private insurance covered about 8.6 percent.
The announcement of the hospice program follows a policy proposal unveiled last month for informing Medicare beneficiaries of their options as death approaches. Under the proposal, Medicare would for the first time reimburse doctors and other health-care professionals for talking to patients with advanced-stage diseases about their goals and wishes and the likely results of their treatment options. For instance, some patients might want to forgo a surgical procedure that would be a long shot, require weeks of recovery and powerful painkillers, and result in diminished capabilities. They might prefer to spend their final days alert and in the company of family.
The Centers for Medicare and Medicaid Services, or CMS, is taking public comments on the proposed change and will make a decision in the fall on whether and how much to reimburse providers for those conversations.
Some disability and anti-euthanasia advocates have opposed Medicare payments for such consultations, wary that the motivation is to reduce costs rather than to follow patients’ preferences. The suspicion ignited controversy during the debate over the Affordable Care Act in 2009, when Sarah Palin, the former Alaska governor and 2008 Republican nominee for vice president, raised the specter of “death panels” charged with determining which patients deserved to be saved.
But the National Right to Life Committee, which advocates against euthanasia and abortion, said it supports allowing treatment to be combined with hospice care.
“We have long supported giving patients access to both curative and palliative care — to ease pain and suffering — instead of requiring them to choose between them as under current hospice funding requirements,” Burke Balch, a spokesman for the group, said in an e-mail.
After providers showed greater than expected enthusiasm for the hospice program, CMS expanded the pilot program from 30 sites to 141, serving as many as 150,000 patients in 40 states.
“These are great steps by CMS in moving toward a laudable goal, which is to allow better access to supportive services provided by hospices,” said Vikranta Sharma, the medical director of VNA Health Group, a home-care association that will run several demonstration sites in New Jersey.
During the experiment, CMS will assess whether more people use hospice care, the quality of the care, whether patients and their families are satisfied with it, and the costs.
The sites will be open to patients who have advanced-stage cancer, chronic obstructive pulmonary disease, congestive heart failure or AIDS and who have a prognosis of six months or less to live.
Hospice services will include supervision and treatment from doctors, nurses, social workers and chaplains; temporary relief for caregivers, or respite care; routine home care; various forms of therapy and round-the-clock telephone consultations. Prescriptions and medical devices will also be covered, along with palliative treatments.
Medicare will pay the hospices up to $400 a month per beneficiary.
The use of hospice services has grown steadily since they were first offered in the United States four decades ago.
Nevertheless, of cancer patients enrolled in Medicare who died in 2013, only 47 percent had used hospice services, according to data from the Medicare Payment Advisory Commission, which provides analyses to Congress. The median length of stay for hospice decedents was 17 days, although the Medicare hospice benefit can extend for six months or longer.
Many hospice and palliative-care experts say more people would choose hospice care were it not for Medicare’s requirement that patients give up potentially life-extending treatments.
The either/or policy dates to the beginning of hospice care, which started as a grass-roots movement to shield dying patients from invasive, painful and futile medical procedures. Because the operations were often expensive, Medicare sought to restrict hospice eligibility to patients willing to forgo them.
But medicine has changed since then: Some treatments not only hold the promise of extending lives but also can relieve pain.
The demonstration will determine whether a shift in policy would drive up Medicare’s costs. Tulsky of the Dana-Farber Cancer Institute doubts that it will.
Patients who are expected to live less than six months already are expensive to care for, he said, and the additional cost of hospice care is smaller than many new therapies. If patients forgo burdensome treatment, he said, costs could be lower.
This article was produced by Stateline, an initiative of the Pew Charitable Trusts.