Vol. 11 •Issue 1 • Page 28
Palliative Home Care Focuses on Quality of Life
Javier denied the severity of his illness, although his fragile health picture included COPD, degenerative joint disease and osteomyelitis. He suffered from severe dyspnea and needed supplemental oxygen around the clock.
When home care providers evaluated Javier in April, he was so short of breath he couldn’t even leave the house to see his doctor. He lived alone in East Harlem and struggled to take care of himself. Javier refused to consider inpatient care, opting for palliative care at home instead.
Susan Shampaine Hopper, PhD, wants to do more for patients like Javier who face life-threatening illness. As project director of the United Hospital Fund’s Community Palliative Care Initiative based in New York City, she and her colleagues have identified “a huge and obvious need” for palliative home care as a step between regular home care and hospice.
Chronic diseases, such as COPD, cancer, heart disease and AIDS, accounted for three-quarters of all deaths in New York City in 1997, but only a small percentage of these people received care outside of the hospital. They suffered fear, discomfort, pain and symptoms that could have been managed under palliative home care.
“We only reached people very close to death,” Dr. Hopper explains. “It seemed very important to find another strategy to meet people earlier in the course of their disease,” when people are still living at home.
These patients may present complex needs, including clinical, socioeconomic and spiritual issues relating to the end of life. Sometimes their practical needs must be addressed before other services can be delivered. Dr. Hopper recalled a COPD patient who needed new living quarters because she could no longer walk up the stairs to reach the apartment where she lived.
Dr. Hopper launched the Community Palliative Care Initiative in February 2000 to address such problems. Through the United Hospital Fund, she commissioned six programs to develop culturally appropriate palliative care programs in New York City neighborhoods.
“We are really testing different models,” Dr. Hopper says.
A VERY FINE LINE
A new definition of palliative care is emerging from the programs, with symptom and pain management forming the core components. Palliative home care focuses on “quality of life” while hospice emphasizes “end of life,” explains Jenny Kales, RN, of the Hertzberg Palliative Care Institute at Mt. Sinai Medical Center in New York City.
An important distinction is that hospice patients sign away any curative measures, accepting only comfort care. “In hospice, you have to say you are not going to fight this any more,” says Eleanor Channing, RN, a senior account executive with Visiting Nurse Service of New York, which also is an initiative participant. “In palliative care, you can continue to treat the underlying illness.”
Patients diagnosed with a life-threatening illness need both palliative and hospice services at different stages of their illness. There is “a very fine line between what is hospice care and what is palliative care,” acknowledges Noreen McNicholas, communications director for the Center to Advance Palliative Care. CAPC is a resource for hospitals and health systems interested in developing palliative care programs. She views palliative care like an umbrella covering services related to the treatment of pain and quality of life.
Coordination is one of the keys during the palliative care stage. Along with management of pain and symptoms, these patients may need counseling about end-of-life issues, such as establishing advance directives. Channing recalls a 44-year-old single mother dying of cancer who needed to appoint a guardian for her children, for example.
Unfortunately, these chronically ill patients tend to move in and out of acute care hospitals until someone deems them ready to enter hospice. Discharge planning rarely includes a palliative care component. Clinicians involved with developing palliative care programs want patients to be sent home with a plan addressing social, emotional and spiritual needs along with medical care, McNicholas says.
Palliative care providers have needed to educate their coworkers about the new step. “One of the barriers we identified was the professional understanding of palliative care,” Channing notes.
Reimbursement has loomed as another obstacle to providing quality palliative care. Patients such as Javier become a balancing act for Kales, a care coordinator. She must weigh the services they need with the benefits they have available to pay for their care.
“Palliative care is definitely insurance driven,” Kales explains.
At first she favored hospice for Javier, but she worried that he might live longer than the prescribed six-month criteria. Although care would not be withdrawn, patients may limit the benefits they receive if they enter hospice care too soon. Life-prolonging therapies are not always covered, including services such as total parenteral nutrition.
Because Javier was in his early 60s and too young to qualify for Medicare, Kales packaged long-term care into a New York State Medicaid program that included a home health aide eight hours a day, a weekly visit from a nurse and periodic home visits from a doctor affiliated with Mt. Sinai’s Visiting Doctors Program. Javier and his caregivers also stayed in touch by telephone, building a network to catch any deficits in his care.
Javier died at home in October. Thanks to Kales and the palliative care plan she developed, Javier received the medical attention he needed and the dignified death he chose.
This article appears posthumously. Francie Scott was senior editor of ADVANCE.