Name of Project: PalCare: A Palliative Care Program for People with advanced HIV/AIDS
Institution: Louisiana State University Health Sciences Center/HIV Division, New Orleans, LA
PI: Harlee Kutzen, MN, ACRN
Abstract (as described by Project staff)
PalCare is an adjunct HIV palliative care program of symptom management, comfort, education and support for patients with refractory, advanced HIV disease who are blending aggressive antiretroviral and palliative care therapies to the degree of their desire. This program is focused on serving the patient and their caregivers. Goals of the project include assessing the impact of PalCare Project on the quality of life for those receiving services; measurement of the reported changes in symptoms; recipients view and feelings on spirituality, satisfaction with services, caregiver strain, grief resolution and functional abilities; and dissemination about the success of PalCare Project to other institutions, agencies and sites.
Brief Synopsis of Program Characteristics, Successes and Challenges
End-of-life planning, and complex symptom management and support are frequently postponed until individuals with HIV/AIDS are quite advanced in their disease and families are in crisis. Interdisciplinary care of patients and families becomes burdensome when care systems are not designed for complex support needs of advanced HIV disease. PalCare was designed as an intervention and research project to blend curative and palliative care to deal with these issues.
PalCare service delivery is a palliative care team integrating HIV aggressive care and comprehensive symptom management. It is provided by a dedicated interdisciplinary HIV palliative care team, including a social worker, physician, nurse practitioner, clinical mental health nurse specialist, and a nutritionist, that have specific expertise in pain management, symptom control and end-of-life planning. PalCare data summary (April 2001) shows that by far, the project spends most of its time on pain management, psychosocial issues, and other symptom management.
Care consultation is provided for patients, families and clinical providers on an outpatient, inpatient and telephone basis. The innovative component of this project is the care and planning focus on integrating palliative care into existing primary care for patients with advanced HIV.
Most of the patients are referred to the PalCare Program through referrals from the primary care provider, nurse, social worker, case manager, nutritionist, psychiatrist, discharge clinic, primary care team meetings or self referral. Once referred, the patient receives consultation on an inpatient or outpatient basis, or at home. This consultation involves discussion of pain and symptom management, end-of-life planning, home based care needs, housing, support and discharge planning. Continuing consultation sometimes occurs via email, with patients emailing questions, concerns and feelings directly to the PalCare physician or mental health CNS. This case management provides regular contact and reassessment of needs as patient’s living arrangements change, clinical priorities change and as family’s needs arise. The project utilizes hospice, home care and personal care attendant services, residential facilities and community case management services to provide care for patients. Patients, however, often refuse hospice, which has placed additional demands on PalCare staff time and for on-call consultations. PalCare Program chose not to use the word “Hospice” because of patient’s perception of a negative connotation.
Patients are eligible for the services by diagnosis of major opportunistic infections, anticipated time of death (6 months to 3 years) and most commonly clinical or psychosocial triggers such as chronic uncontrolled distressing symptoms, medication resistance, decreasing CD4, emotional distress, isolation, hopelessness and depression. Patients have changed throughout the course of the project. There are now more HIV patients who have stabilized, but there is an increase in dementia and need for supervised or assisted living. HIV care is being mainstreamed, even though HIV patients have never been traditional users of mainstream care. Further, patient deaths are still viewed as failure by primary care physicians.
Further complicating patient care in this environment is complex ethical issues of balancing harm reduction model for patients actively using illicit substances who also have advancing disease and chronic pain.
On the positive site, the increased attention to physician-assisted suicide has amplified many health care providers’ feelings and those opposed more clearly embrace enhanced PalCare type activities.
Exportable Products/Tools
Communications
PalCare has a patient brochure and they have received local media attention. They were also featured in the LSU faculty newsletter.
The project has conducted an amazing array of 42 educational training programs for project medical staff, medical students, fellows, residents, interns, nurse practitioners, physician assistance, etc.
Generalizing the Model
The program staff suggested the following change to their project to make it even more effective in any future efforts to provide palliative care for HIV/AIDS patients:
Words of Wisdom from the Project
“It is important to integrate buy-in from the highest administrative levels possible during the initial program planning and implementation. Utilize strategic planning with site visitors to assist thinking outside of existing program/resource boxes; plan for administrative time for data management and personnel supervision. Plan for a blend of qualitative and quantitative data collection and analysis at the beginning of the program.”
