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Treatment or Comfort: Why Must Dying Patients Choose?

Insurance rules keep people from getting the end-of-life care they need.

A friend with end-stage pancreatic cancer recently turned down hospice care because she would have had to stop receiving the blood transfusions that fortified her.

Insurance rules push countless dying patients into a box like this. Under Medicare, Medicaid and most commercial plans, patients must agree in writing to forgo potentially curative or life-prolonging treatments for their primarily illness in order to enroll in hospice. This requirement poses practical and psychological barriers that keep many patients, and not only dying ones, from getting the comprehensive support they need.

At long last, Medicare is beginning to address the problem. In a three-year pilot program called Medicare Care Choices, about 30,000 patients around the country will have the option of continuing treatment even after they sign up for hospice. This is a big deal not only for the hospice world but also for palliative care services more generally.

The cure-versus-comfort dilemma was enshrined in the 1982 law creating the Medicare Hospice Benefit, which pays the bills of nearly 90 percent of the people in hospice care. In other words, from the start Medicare set up hospice as an either/or choice between the possibility of cure or longer life, however remote, or of the comfort care that hospice provides. This has fed the widespread misconception that hospice means “giving up.”

In researching our book, Changing the Way We Die, we found this choice to be a major reason why many patients never opt for hospice or do so only in the final days of life, too late to get much benefit.

Palliative care services are bridging the divide between cure and comfort upstream, in hospitals and other health care settings. The services bring expertise in pain and symptom management — knowledge and skills honed over decades in hospice programs — to patients who are not necessarily terminally ill.

This long-overdue shift recognizes that patients should not have to wait until they’re dying to receive help from a professional team trained in relieving physical, emotional and spiritual suffering. Everyone with a serious acute or chronic illness should have access to the full array of interventions that can help — surgery or dialysis or chemotherapy or whatever might be medically indicated, along with palliative care.

But the cure-versus-comfort idea casts a shadow over palliative care services. We have interviewed many patients who mistakenly believe that palliative care is just a new name for hospice, a way to say you’re dying and nudge you out of treatment. Rather than welcome the extra support, patients sometimes panic or become angry when they are referred for a palliative consult.

The fears will ease with time and education. But it doesn’t help that at the very moment that palliative care services are effectively integrating cure and comfort in hospitals and outpatient clinics, hospice programs are being pressured into reinforcing the divide. Until recently, many hospices allowed their patients to undergo blood transfusions, palliative radiation and other treatments that can greatly relieve pain and fatigue, even if those treatments might extend life in some instances.

Now, under increasing Medicare scrutiny and tightening reimbursements, more and more hospices say no to any treatment that might cross the (sometimes-fuzzy) line between controlling symptoms and extending life.

The Medicare Care Choices Program will study the impact of erasing this line and lifting treatment restrictions. About 30 hospices will participate in the pilot — the government is taking applications until mid-June. The feds hope to determine whether “concurrent care,” as the approach is called, encourages more people to enroll in hospice. And does it encourage hospice patients to grab at futile medical procedures, wasting money and driving up costs?

Aetna, the health insurance giant, has already studied these issues, and the results are promising. A few years back, Aetna liberalized its hospice benefit to expand hospice eligibility and services and eliminate the cure-versus-care dilemma. The company coupled these new rules with telephone support by nurses trained in palliative care, who provided a lifeline for vulnerable patients.

In the first two years of the looser rules, hospice use more than doubled, to 70 percent of eligible patients. Patients also signed up earlier. And even though they had the option of pursuing curative treatments, few seemed to do so.

Turns out, with good support and a compassionate, knowledgeable professional just a phone call away, patients have little interest in running back and forth to emergency rooms or trying last-gasp treatments. They simply want the choice to be theirs.

This post originally appeared on Restoring Quality of Life, the blog of the Partnership for Palliative Care.

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