Mobile Palliative Care Teams Hit the Road

AUSTIN, TEX. — Americans can get almost anything delivered to their homes, but it might not be so easy to get the doorbell to ring when you're most in need.

“There are more than 1,000 hospital-based palliative care teams in the United States, and a lot of inpatient-dedicated palliative care units and outpatient clinics, but what we don't have enough of is community-based mobile palliative care teams,” Dr. Bernie Lee said at the annual meeting of the American Academy of Hospice and Palliative Care Medicine.

Metropolitan Jewish Health System created a home-based palliative care consultation team in September 2005 that now serves patients at home and in three nursing homes in New York City and Long Island. The Brooklyn-based program has an average census of 180 patients, with 90% residing at home.

The main focus of the team is to provide palliative care assessments and to establish patient goals in collaboration with the patient's other physicians, Dr. Lee said. Buy-in from the primary care physician is vital, but often there is no primary care physician to refer to. One-time consultations do occur, but most patients need frequent visits for pain and symptom management or psychosocial support.

Last year, 213 patients converted to hospice care after about 19 months of in-home palliative care, and 66 patients died on the program because they didn't want to go on to hospice—or couldn't, because they were still undergoing aggressive treatment. Most patients are older and are dealing with multiple comorbidities, with the primary diagnosis being cancer in 59% of patients, cardiovascular disease in 12%, and a neurologic disorder in 6%.

Palliative care differs from hospice in that it can be initiated earlier in the course of a serious or end-stage illness, can be utilized with conventional or curative care, can be accessed in conjunction with other health care providers, and does not require a 6-month prognosis for admission, said Dr. Lee, who is medical director of hospice at Metropolitan.

Referrals to the palliative care team come from a variety of sources including physician offices (55%), hospitals and oncology practices (34%), and certified home health aides (9%). As community awareness of the program increased, referrals to the palliative care team jumped from 20 referrals in its first year to more than 500 in 2008—almost as many as the health system's hospice referrals.

As the only community-based palliative care program, Metropolitan has also had to demonstrate its outcomes to HMO providers, who are slowly coming around to working with the program.

The team has only six full-time employees and reimbursement has been challenging, particularly since home-based palliative care is not regulated, Dr. Lee said. When grant funding for the program ran dry, Metropolitan had to step up and provide institutional support.

It's taken about 2 years, but the program is building other lines of revenue, primarily through Medicare and Medicaid, Dr. David Wollner, director of palliative medicine at Metropolitan, said in an interview. It is also seeking philanthropic support from within the organization and externally by applying for grants, and is developing products such as a palliative care consultation model it's selling to a large HMO in New York City, he said.

“There are many reasons why we're surviving, but the key element is having a core of committed, seasoned professionals who are willing to go the extra mile during the early years,” he said. “The other thing is that there is never [just] one element of support.”

Dr. Wollner credits the program's success to understanding and respecting their clients' ethnic and cultural diversity. “Each referral is unique,” he said. “We serve the old, the young, the rich, the homeless—and part of our success is being sensitive to the diversity of our population.”

Brian Mandel, a certified palliative care social worker with the team, said that on the same day he might visit an 89-year-old Orthodox Jew with advanced prostate cancer, a 55-year-old Catholic with colorectal cancer, and a 38-year-old Jehovah's Witness from the Caribbean with amyotrophic lateral sclerosis.

Translators are used and patient literature is translated into various languages, but Mr. Mandel agreed that cultural differences must be understood and respected. For example, Hasidic Jews will not touch the body when someone is actively dying because doing so is thought to possibly hasten death, whereas Asians believe it is bad luck to have a person die in the house, he said.

Patients and families may also lack a full understanding of the diagnosis, proposed interventions, or prognosis. They may be angry or in denial, or may not be ready to discuss end-of-life practical tasks such as choosing a funeral home or burial/cremation services.