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Hospice as continuation of care, not just end of the road
Open access could help patients avoid 'terrible choice'
Hospice evolved from the need to provide medical and social support to terminally ill patients in the last weeks of their lives. But while the benefits hospice can provide have expanded, the perception that hospice is where patients go to die has, until recently, stayed the same.
According to Richard Payne, MD, director of the Duke Institute on Care at the End of Life at Duke University Divinity School in Durham, NC, patients at end of life who might benefit from what hospice has to offer — medical, social, and spiritual support — have been faced with what has come to be known as the "terrible choice:" To qualify for Medicare hospice benefits, most patients have had to resign themselves to giving up advanced medical treatments such as chemotherapy and dialysis.
But that's changing, as evidenced by a movement toward "open-access" hospice programs that allow patients to continue the treatments that, while not life-saving, can make the quality of the end of life much better.
"We're not talking about people like Elizabeth Edwards or Tony Snow, who have incurable conditions but who aren't likely to die in six months," says Payne, referring to the wife of presidential candidate John Edwards and the White House spokesman, both of whom recently have had recurrences of cancer.
"But what hospice can do is provide open access to people who are likely to die in six months but who can be made more comfortable through palliative chemotherapy or radiation, antiretroviral drugs — treatment that is not going to cure them, but will make the last weeks or months of their lives much more comfortable," he explains.
'Terrible choice' forced by money
Medicare's rules on hospice care do not require that hospice programs deny patients advanced medical care. But at a benefit of $130 per day for such care, the ability for a hospice program that's not backed by a larger institution to offer that kind of care to its dying patients is not likely.
To qualify for hospice benefits, a patient must be diagnosed with a condition that is likely to result in death in six months or less. For many patients and their doctors, that requirement in and of itself is enough to delay entering hospice.
"Physicians in their training are taught to cure," points out Roseanne Berry, RN, chief compliance officer for VistaCare, an Arizona-based national hospice provider. "There is much more education going on now in end of life [in medical schools], but some doctors have had little or no training in how to help their patients die."
The challenge for hospice providers, Berry says, is to help patients and physicians see hospice not as the end of the road in treatment, but as another layer in the continuum of care — a natural continuation of the care the patient has had up to the point where hospice becomes a consideration.
"We're getting there, but we still have about one-third of hospice patients die within a week of admission, and while we're glad to provide that care, it certainly doesn't give us the chance to provide the best care we could for those patients," Berry adds.
In 2005, only about a third of the 2.4 million people who died in the United States were in hospice care, Payne says, perhaps half as many as could have benefited from hospice programs.
He says Medicare policy makers argued that by giving patients a choice of staying in traditional health care or opting into hospice care that would allow the government to save money and still give patients what they need to die comfortably.
"But where do you draw the line?" asks Payne, addressing advances in medicine that blur the line between palliative and curative care. "How do you decide if something is given with palliative intent vs. curative intent?"
Larger hospices can offer more in the way of palliative care because they can spread their costs over a larger population, he points out.
"If you have 1,000 patients and 900 are getting relatively low-intensity therapies that cost less than $130 a day, you can spread around the remainder to provide higher-cost care to the other 100 patients who need it," he says.
As the baby boom generation and its parents age, they are demanding more choices than just a place to die comfortably, Berry says, so hospice services are changing to meet that demand.
"I bet you have seen more changes in this area in the last two years than you've seen in the 10 years prior to that," she suggests. "But you have to have those conversations. We're great at planning parties, planning vacations, planning everything but the end of our lives; but having those conversations lets us say, 'If you're eligible for hospice care, if your doctor has certified that you are, then let's remove the barriers and look at hospice as another part of your treatment.'"
The question that remains, Payne says, is how to afford it. While Medicaid is saving money by paying only $130 per day in benefits, for many patients the costs skyrocket because of expensive trips to the emergency department or hospital admissions that could be avoided with advanced care provided within the hospice setting, experts say.
"It's a good thing to do to offer patients these options, and it does diminish the psychological barrier of the terrible choice," says Payne. "If there is a way to provide the care they need in hospice — team-oriented, physical, psychosocial, and spiritual well-being — and provide some medically oriented therapies with palliative intent, it makes a lot of sense medically, and it's a reasonable health policy."
Open access means providing these types of therapies, Payne continues. A hospice does not get paid any differently when advance treatment is provided, so open access can mean providing more care at a financial loss. And if Medicare determines that the treatment is curative, not palliative in intent, it could withhold funds for that patient completely.
Removing obstacles and fear
Patients who might be eligible for hospice often are kept away by fear and lack of understanding, Berry and Payne agree.
"We want to remove the obstacles. We tell patients you don't have to have a caregiver in your home. You don't have to have a [do not resuscitate] order, you don't have to have advance directives to come into hospice," explains Berry. "Medicare allows hospices to have their own philosophies, so we do what we can to remove as many of the obstacles as we can, get them into hospice, and then work with them to plan how they want their end of life to be."
Payne says the psychological barrier of looking at hospice as a place to go to die is one of the biggest obstacles.
By not choosing hospice, or by choosing it only in the last days of life, Berry says, many people are giving up a valuable system of care and support.
"Most of our services are provided in the patient's own home," she points out, often with providers the patient has come to know and trust.
"One big concern among patients at the end of life is abandonment. They don't want to be abandoned by their primary care or oncology provider," she says. "In hospice, we can tell them that we will work with their providers, and we are just another layer of care and another set of providers who are here to enhance the care their doctors say they should have."
Payne advocates educating patients and their health care providers and support systems (family, clergy) about hospice, so that the decision to choose hospice is made ahead of time as a part of continued care, not as a last resort.
"The No. 1 complaint I hear from patients is, 'Why didn't we get this sooner?'" says Ronald J. Crossno, MD, medical director for VistaCare Hospice in Temple, TX. "Thirty-five percent of eligible U.S. patients receive hospice care. Twenty-five percent of these patients get hospice care for less than seven days [before they die].
"An earlier referral means the patient can still go see the grandchildren and it improves the transition. If you're hurting or in pain, you can't deal with the other issues relative to dying."
Berry says that patients who enter hospice shouldn't think they have to give up hope.
"But you have to have the prognosis [of death likely in six months], and those prognoses are very hard for physicians because they want to be optimistic," she explains.
Palliative care physicians can be a good resource if a patient — or his or her physician — is having a difficult time concluding that hospice is an option.
"Palliative care specialists deal with all of the issues that terminally ill patients face. The specialist makes arrangements and goes beyond the social worker," Crossno explains. He says 25% of U.S. hospitals had palliative care specialists in 2005, but expects that number to jump by 2010.