Diane Meier is the director of the Center to Advance Palliative Care, a national organization that aims to increase the number of palliative care programs in hospitals and elsewhere for patients with serious illnesses. Meier is also a professor of geriatrics and palliative medicine at the Icahn School of Medicine at Mount Sinai in New York City. We spoke about a recently launched pilot program under the health law that allows hospice patients participating in the pilot to continue to receive life-prolonging treatment. This is an edited version of that conversation.
Q. There’s a lot of confusion about how hospice care differs from palliative care. Maybe we should start by clearing up what those terms mean.
A. The short, quick elevator answer is that all hospice care is palliative care — but not all palliative care is hospice. Palliative care is a team-based type of care focused on maximizing the quality of life for people and their caregivers at any stage of illness. It focuses on treating the pain, stresses and symptoms of serious illness. The emphasis is on need, not prognosis or how long you might have to live.
In contrast, the hospice benefit, which was written into the Medicare statutes about 25 years ago, had a number of limits in it to control spending.
First, two physicians have to certify that the patient will likely be dead in six months if the disease follows its natural course. Second, the patient or family members need to sign a paper giving up regular insurance coverage for disease treatment in order to get access to hospice, a forced either/or choice between life-prolonging treatment and palliative care. It was an attempt to save money. Most people need—and want—both types of treatment.
But we can’t predict who’s going to die in six months, in part because of the variation in people. We can’t really tell if someone is going to keep motoring along. The other thing is that many people want to keep receiving disease treatment, because it is helping them to get along and keeping up their quality of life. As someone who has counseled many people with serious illnesses, I can tell you it is very painful to tell people they have to sign away their rights to treatment. It’s like hitting a man when they’re down.
Q. The Centers for Medicare & Medicaid Services recently announced that the agency is launching the Medicare Care Choices Model, a program created under the health law that allows hospice patients with advanced cancers, chronic obstructive pulmonary disease, congestive heart failure and HIV/AIDS to receive not only hospice care but also curative care.
Does this experiment signal a noteworthy change in approach toward caring for dying patients?
A. I think it does. I think it’s a recognition that this forced choice between palliative care and life-prolonging treatment is irrational.
Unfortunately the way the new benefit was written is that the only people who can be eligible [for the pilot] are those who would be eligible for hospice, that is, people very likely to be dead within a few months. People tend to be pretty damn sick by the time they become eligible for hospice. I’m not really sure what access to curative care means in that context. If these patients could have been “cured” they wouldn’t be eligible for hospice.
It’s a misnomer to say they’re going to be cured. There are very few diseases that we cure in U.S.medicine. In most cases what we’re talking about is life-prolonging treatment, and in most cases that’s palliative treatment. It makes people feel better. If you have emphysema and I give you broncodilators and steriods to open up your airways, it will prolong your life, and it will also make you feel better.
Q. I understand that some hospices say they won’t participate in the new program because the CMS payment rate of $400 per beneficiary per month isn’t enough cover their costs, which include coordinating beneficiaries’ care with curative and other providers, and providing counseling and support services for beneficiaries and their families (curative care services are covered by the regular Medicare program). Is that rate too low to provide the necessary services?
A. You can do something that’s fairly telephone intensive for $400. You can have staff get training in symptom management and have them talk to family members, which are usually the ones who are calling with questions. The problem is if you have to dispatch a human being to the person’s home. It’s difficult to do that for $400. And when someone calls after hours you often need to do that. It’s really hard to provide 24/7 visiting capacity with that amount of money.
Remember: These patients are not stable, they are the sickest patients in our health care system. They need a lot of hand holding. Availability and responsiveness are key and that’s expensive.
The patients in this demonstration project may be much more complicated to take care of than regular hospice patients. Not only are they dealing with the conseqences of disease but with the consequences of treatment, the side effects of chemo, for example. Hospice staff are not accustomed to working with patients who want continued disease treatment.
I think it’s going to be challenging but I think it will lead to some really creative solutions. Hospice organizations may look to build out a more comprehensive safety net by partnering with other community providers like Meals on Wheels or local aging services or transportation providers. And that would be really good.
Q. What does the research show about people who receive both hospice or palliative care and life-prolonging treatment?
A. There are now several studies that show that patients who receive both palliative care and life-prolonging care actually live longer than those who receive life-prolonging treatment alone.It makes sense. People aren’t in excruciating pain, they’re not depressed, their families feel confident in their ability to care for their loved one. And if, very importantly, people are able to avoid the very real risks of hospitals, it’s no surprise that they live longer.
They’re not getting less life-prolonging treatment with palliative care, they’re having less crisis. They reduce emergency care use because they don’t need it and that saves money.
If palliative care were a drug, I’d be rich.
Q. What could that mean for this new CMS pilot program?
A. Let’s say hospices can do this for $400. Think about the pressure to scale that up to people whose prognosis is two years or three years or even longer.
So I can see why CMS is being really cautious. It’s going to be important to demonstrate that if you take people and do this, that it won’t break the bank. My prediction is that it will actually be less expensive to provide both approaches at the same time precisely because it will lead to less need for costly emergency and crisis care.
Q. What’s next on the horizon for palliative care?
A. We’ve gotten pretty far with integrating palliative care into hospitals. More than 60 percent of hospitals with more than 50 beds nationwide have programs. But most people are living at home. Right now it’s very hard to access palliative care if you’re not on hospice or in the hospital. In the next 10 years, we need to integrate palliative care into home care, cancer center care, dialysis units, nursing homes and other settings.
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