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PalCare

In a public health system “safety net” setting in New Orleans, Louisiana, a demonstration project called PalCare set out to create a new model blending and integrating palliative care and aggressive treatment for people with advanced HIV disease. By bridging gaps in service, PalCare built trust among a distrustful, disenfranchised, stigmatized patient population, even prompting earlier hospice referrals. Over the past four years, the PalCare project has evolved to meet a variety of patient and system needs. With each step it has become ever more valuable to the HIV Outpatient Program (HOP) at Medical Center of Louisiana at New Orleans (MCLNO) and Louisiana State University (LSU) Health Sciences Center.

The Promoting Excellence grant is now completed. But HOP’s administration has incorporated PalCare staff positions into the outpatient clinic’s budget, preserving the program’s value to the LSU system as a source of expertise on pain and symptom management, psychosocial/spiritual support, and existential or life-transition counseling for the most difficult cases seen at the clinic, says Dr. Lynn Besch, HIV Division Director at LSU and the administrator responsible for HOP’s budget.

“We would fight for this program even if it never was ‘cost-effective’ in money terms because it is so effective in clinical terms,” Besch says. “The reason we supported the continued existence of PalCare is that this program allows us—clinicians, social workers, nurses, in other words, the ‘clinic’—to do a better job of taking care of our patients.”

Louisiana State University Health Sciences Center, New Orleans, Louisiana
PalCare: A Palliative Care Program for People with Advanced HIV/AIDS
Principal Investigator: Harlee S. Kutzen, MN, ACRN
Focus: A team approach based in an outpatient HIV clinic, offering comprehensive palliative care and support for patients living with advanced HIV disease and their families as well as support for other clinicians in dealing with the challenges of this high-risk, high-need, multiply diagnosed population.

PalCare focuses on multiply diagnosed patients with advanced HIV disease who “aren’t doing well” and may be refractory to anti-viral therapies. Such patients tend to fall through the system’s cracks because they present a host of symptoms, secondary infections, psychiatric diagnoses and social problems but often aren’t ready to consider a hospice referral that might help to manage their care. “Truthfully, ‘hospice’ sometimes does tend to be a dirty word for both patients and health care providers,” reflecting widespread misconceptions about the concept, says PalCare team physician, Dr. Jim Zachary. “We have improved referrals to hospice—but it’s very difficult to do.”

Multiple Diagnoses, Complex Needs

For many patients with HIV disease, current treatment regimens include Highly Aggressive Anti-Retroviral Therapies (HAART) that have revolutionized treatment over the past five years. HAART can be extremely complicated and burdensome and cause significant side effects. Often patients need considerable support to remain on the therapies.

The patients served by PalCare may have intractable physical symptoms, dementias, intergenerational and family infection issues, multiple losses, and co-factors such as poverty, homelessness, mental illness, incarceration and addiction. The public health system often is ill-equipped to handle such multiple needs. Since there is, as yet, no cure for HIV, it is possible to view all HIV treatments as essentially palliative in seeking to forestall opportunistic infections and their consequences while improving comfort and quality—as well as duration—of life.

HIV Care is Not Black and White

PalCare helped organize and standardize HOP’s approach to this gray zone between (or straddling) aggressive and comfort-oriented treatment approaches, “allowing us to do a better job of taking care of our patients,” Besch explains. “The project provided a common language to start identifying these issues and a place to go” to discuss and learn more about a subject that other providers had tended to avoid. Thanks to PalCare’s services and resources, clinical and support staff’s stress has diminished and efficiency has increased. The project also helped to change the medical culture at HOP, fostering recognition of the importance of end-of-life care. “I don’t think any of us had any idea how valuable PalCare would be,” Besch says.

“Clinicians were spending enormous time and resources on these patients but it wasn’t a coordinated approach,” she adds. For example, primary care providers often struggled to treat patients’ reported pain while dealing with their histories of addiction and the real potential for drug diversion. PalCare staff worked to establish trusting relationships with patients while simultaneously setting clear boundaries and negotiating contracts for compliance.

The project’s demonstrated value to patients and providers has earned the system’s financial support. The PalCare director’s position is now being covered through the clinic’s administrative services contract with MCLNO while the social worker’s position has been picked up with the help of federal Ryan White Act Title I funds. Part-time physician, advanced practice nurse, mental health nurse, nutritionist and epidemiologist positions, funded by in-kind allocations from HOP, are also continuing.

Originally planned as a modified case management model, PalCare quickly evolved in response to other needs within the local health system. It has emphasized proactive, comprehensive, interdisciplinary palliative care and support, patient advocacy and lifetransition counseling, and education and support for other health professionals in the HOP clinic and beyond. “Although we designed the project around end-of-life care, we really focus on life and life-planning issues,” including patient-defined life goals that can encompass their eventual deaths, says PalCare director Harlee Kutzen, MN.

HOP struggles with the challenges common to most inner city, safety net systems—along with the fiscal and political vicissitudes of public health funding in Louisiana. PalCare’s real value to this system lies in identifying and filling a wide variety of needs and creatively adapting services to plug the gaps. Examples of this penchant for solving system problems, creating new resources, supporting and extending primary care services, reducing stresses and burdens on the system and thereby enhancing overall efficiency, include:

  • Onsite availability of PalCare staff in each primary care clinic at HOP;
  • A special palliative care clinic offering urgent appointments to PalCare’s medically complex patients;
  • Pain management and drug monitoring, including a process for streamlining the filling of pain prescriptions;
  • Pain and symptom management consultations with other clinical staff, both formally and in casual conversations;
  • Development of standardized procedures and approaches for treating symptoms;
  • Development of an inpatient pain and symptom management consultation service for the HIV Inpatient Unit at MCLNO; and
  • Education for inpatient and outpatient staff, role modeling of palliative care skills, and formal and informal clinical mentoring.

As the clinical program evolved and expanded, research aspects of PalCare lagged. Because of PalCare’s popularity and clinical success, staff’s time has been captured by increased requests for service, while data-gathering efforts had to be scaled back. Only a small proportion of the hundreds of patients served by PalCare was formally enrolled in the grant’s research program, because of their marginalized circumstances. Many more benefited from its clinic visits, pain consultations and case management.

“You have to assume that this program results in cost savings from decreased stress for staff, better care for patients, enhanced continuity of care and better utilization of home care and hospice.”
- Dr. Lynn Besch, Hiv Division, Lsu Health Sciences Center

Potential For Cost Efficiencies

Although data on health service utilization and overall costs have not been formally tracked, aspects of the PalCare project that may impact on system efficiency or resource use include:

  • Improvements in outpatient HIV primary care, including improved symptom management, which decreases crises and unplanned, urgent and emergency medical services;
  • Management of difficult pain problems, freeing primary care practitioners to concentrate on other issues;
  • Facilitated communication between patients, families and primary care providers to better reflect patients’ goals and enhance the effectiveness of treatment;
  • The potential for earlier hospital discharges because of PalCare’s inpatient pain and symptom management consultation and participation in discharge planning rounds at MCLNO; and
  • Increased hospice referrals, made possible by non-threatening explanations and alliance building by PalCare staff.

The story is not straightforward. PalCare clinicians emphasize that it is often difficult to decrease hospital length of stay for this complex, needy population in this setting. In fact, when necessary for managing a patient’s disease and urgent complications, PalCare staff may send the person to the emergency room or advocate for a hospital admission.

Actual savings in hospital days, emergency room visits, other unnecessary health care utilization or overall costs will require further study. But the program’s value has been noticed all the way to the top of the system’s organizational charts. Dr. David Martin, chief of LSU’s Infectious Disease Section, which oversees all infectious disease programs within the Health Sciences Center, notes, “From an administrative point of view, a program like this helps to create a team approach to a common and very serious disease that has significant end-of-life issues. If those issues aren’t properly dealt with, it puts a lot of stress on the whole system.”

Besch, who administers HOP, is unequivocal about PalCare’s value. “It wouldn’t matter how much it costs to keep this program here—we would do it. It wouldn’t matter if it saved a dime or not.” It helps, she adds, that the post-grant funding required to continue PalCare was not excessive. Even though some other clinic positions had to be cut when HOP’s Ryan White funding was recently reduced by 25 percent, Besch found ways to include key PalCare positions in Ryan White allocations or administrative contracts.

“We were prepared to defend PalCare’s budget, but it was just approved as part of the administrative contract,” she says. Of course, as HIV division head, Besch answers to the health center’s administration— which “is extremely pleased” with PalCare and its success. PalCare focuses on those patients “who cost the system the most—both financially and in terms of wear and tear. You have to assume that this program results in cost savings from decreased stress for staff, better care for patients, enhanced continuity of care and better utilization of home care and hospice.”

Challenges continue. The impact of Louisiana’s system of health care financing, with its potentially severe dislocations from year to year, has posed intermittent threats for the project. The HOP clinic currently has fairly stable funding and has been able to respond to the needs of even medically indigent patients, but it remains in a precarious position. All of that makes the system’s vote of confidence in PalCare and its continued funding even more remarkable.

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Promoting Excellence in End of-Life Care is a National Program Office of The Robert Wood Johnson Foundation dedicated to long-term changes in health care institutions to substantially improve care for dying persons and their families. Visit PromotingExcellence.org for more resources.

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