JENNIFER BOULDEN

End-of-life care services have been growing steadily since the first hospice was founded in Connecticut just 33 years ago. But palliative care services are now taking off in a big way, both nationally and within the state.

One of the challenges to palliative care is for physicians and other healthcare providers to recognize that many times, palliative care is not the same as hospice care, said Dena Carr, director of community outreach for Arkansas Hospice. Often the two related services are lumped together, as in the American Board of Medical Specialties’ recently announced Hospice and Palliative Care sub-specialty, but there are important distinctions.

Carr describes palliative care as “a focused effort that meets patients and families where they are and walks beside them,” helping them make informed decisions as their disease progresses. Its most holistic definition encompasses not only pain and symptom management, but also emotional, spiritual and social needs that must be addressed to help patients achieve peace and enhance their quality of life on all these levels. Palliative care teams can include physicians, nurses, pharmacists, chaplains, social workers, nutritionists, psychologists, radiation therapists and others.

Hospice, on the other hand, is a formal program of palliative care once the illness has become terminal and it is recognized that curative measures are either too difficult on the patient or are simply no longer controlling the illness, Carr said.

Although hospice requires a terminal prognosis of six months or less, neither hospice nor palliative care require that the patient have a Do Not Resuscitate order.

In fact, while most hospice patients receive palliative care, non-hospice patients receiving palliative care may also be receiving aggressive curative treatment. Indeed, the trend nationwide, according to a June Washington Post article, is to begin palliative treatment long before the patient has a life expectancy of six months or less.

Dr. K. Morgan Sauer, medical director for Hospice Home Care’s free-standing inpatient facility said that certain palliative Comfort Sysytemstreatments are becoming popular, such as nerve blocks during curative treatments or epidural pain pumps given during chemotherapy or radiation, and that they can bring better outcomes.

More and more large hospitals are incorporating multidisciplinary palliative care teams into their core services. The teams help seriously ill patients from all departments cope with the symptoms and often advancing course of their diseases. Some studies indicate that palliative care can prevent further complications and lower hospital expenditures, but the early data on this is mixed as palliative care is often not covered by insurance plans, and fully staffed palliative units can have considerable expenses of their own.

Still, the majority of palliative care work in the state remains closely linked to dying patients, many of whom are in hospice care.

Diane Morgan, an advanced practice nurse and clinical specialist in geriatrics at the Veteran’s Administration Hospital in Little Rock, is board-certified in palliative care and has lectured extensively about the field. Despite the national trends toward earlier palliation, she believes palliative care needs to stay focused on advanced diseases. “In my opinion, it can become too broad,” she said. “Some people believe we should offer patients palliative care as soon as they are diagnosed with a terminal disease. But it can overwhelm them. It’s easier, I think, to step into it as symptoms worsen.”

Usually palliative care teams are asked to step in when treatment is losing its effectiveness, either because of the advancement of the disease, or because the side effects of treatment are becoming unbearable, Morgan said. “We help the patient accept the idea of changing the goal of care, focusing on improving the quality of life rather than aggressively extending it at any cost,” she said. “They usually come around to that decision on their own if you give them time and space to adjust.”

Often, physicians have just as much difficulty adjusting to the concept of stopping curative treatment, said Sauer.

“I think physicians feel death is the enemy,” he said. “They don’t see it as a natural part of the cycle of life. It’s to be avoided, it’s failure, it’s giving up. And a lot of them are afraid of getting sued.”

The hospice and palliative care concept is still so new that many doctors are not yet familiar with its services. Morgan estimates that only a third of likely candidates are being referred to hospice care. Those that do refer patients to hospice or palliative treatment frequently do so only at the last minute. “We get so many patients in their last week of life,” Sauer said. “When they arrive in crisis mode we don’t have a chance to be of the most use, there’s just no time.”

In contrast, he said, one physician he knows consistently makes timely hospice referrals. “Her patients understand why they’re here, participate in the process, really work on making peace with what’s happening over several weeks or months,” he said. “They do so much better than the others. It’s easier on them, on their families, on everybody.”

The state’s end-of-life care is actually rather progressive, Sauer said.
“Arkansas is very unique with regards to hospice and palliative medicine,” he said. For instance, until new facilities opened there very recently, Central Arkansas had three times the number of hospice beds as Nashville, Tenn.

Sauer said palliative care is received very warmly by Arkansas patients and their families. “I think it has to do with our friendliness towards each other and the prevalence of religious conviction,” he said. “With so many believers here in the Bible Belt, patients who have been kept informed of their condition and have had an active role in their palliative care plan are really not afraid of death, so much as they are afraid of living in pain and misery. And bringing them comfort and relief in their final months is what palliative care does best.”



September 2007