Organizing and Financing Palliative Care

This section covers two specific areas: organizational models and financing. Although CARE Act funds can be used to a wide degree to support palliative care, significant challenges remain with regard to integrating the “palliative care approach” into the broader health care delivery and financing systems. A range of service delivery models has been developed within HIV and non-HIV clinical care sites, and Medicare and Medicaid hospice benefits also bear explanation. This section provides some areas for consideration in funding services.

Organizational Issues

Current best practice models recommend the use of interdisciplinary teams working with individual patients and their families over the course of illness. At a minimum, such teams should embody expertise in medical care; psychosocial support; spiritual support; nursing care; and case management, which is crucial in the coordination of care. Depending on the circumstances of the individual patient, additional professionals may be needed, including ethicists, pharmacists, psychiatrists, mental health providers, pain specialists, nutritionists, rehabilitative therapists, legal advocates, substance abuse treatment providers, bereavement counselors, faith-based providers, and peers and buddies.

Palliative Care Providers and Services

HAB has identified several critical components of palliative care:

Not all patients will need all services, and factors such as the accessibility and capacity of existing medical systems will affect the availability of providers and services.

Several effective palliative care program models have been developed that use integrated interdisciplinary (transprofessional) teams to deliver a continuum of services based on clients’ clinical status and needs. Figure 3 lists potential members of such a team. It is important to note that the success of the model relies heavily on the roles and responsibilities of the case management staff working with clients and families to coordinate services among providers and across settings.

The palliative care team should use the full array of interinstitutional and community resources (hospital, home care, hospice, long-term care, adult day services, and others) to promote seamless integration among institutions, settings, and services. The goal is to meet the progressive and fluctuating nature of HIV disease, which requires both curative and palliative care approaches. Services should address medical, therapeutic, and quality-of-life issues beginning in the early stages of HIV infection and concluding with bereavement counseling and support for family members.

Figure 3. Palliative Care Team

Core members

  • Physicians
  • Nurses
  • Social workers for case management and outreach
  • Chaplains

Other potential members

  • Ethicists
  • Pharmacists
  • Volunteers
  • Psychiatrists
  • Mental health care providers
  • Pain specialists
  • Nutritionists
  • Rehabilitative therapists
  • Legal advocates
  • Substance abuse treatment providers
  • Bereavement counselors
  • Peers and buddies

Note that Medicare and Medicaid have certification and licensure requirements for providers that are specified in Federal statute and administrative regulations and under State laws. Although the requirements cover a wide range of professionals, they do not include some of the key members of an interdisciplinary palliative care team. Such persons include peers, pastoral staff, family members, nonskilled nursing staff, some health providers (nonprofessional mental health and addiction counselors), and health education specialists. Provision of their services, however, may be covered to a certain extent for patients who qualify for and choose the Medicare hospice benefit or who enter into a Medicaid managed care program (see the sections on financing care).

Models for Care

Palliative care services generally are provided either in home- and community-based settings or by institutions. Both types of providers operate with specific but differing organizational structures, professional staff and related skills, types and intensity of services, and general clinical treatments and management outcomes. For example, institutional services might be required to diagnose or manage a patient with severe and persistent pain, and long-term pain management and monitoring could be provided by home- and community-based care providers. It is important to develop a network of providers (home, community, and institution based) to meet the emerging and fluctuating needs of CARE Act clients.

Home- and community-based organizational models for palliative care programs commonly include the following:

Institutional, or inpatient, models for palliative care services include the following:

Prisons and jails with populations that require care have faced unique challenges. Several HRSA-sponsored demonstrations funded through the Special Projects of National Significance (SPNS) Corrections Initiative tested and evaluated the need for and effectiveness of providing palliative care services in correctional settings. Prisons often have been more open to the implementation of palliative care services than jails have because prison populations are more stable and present a greater need for chronic care. Prison programs frequently have provided inmates the opportunity to provide end-of-life support and care to dying fellow inmates.

Finally, in some cases it is important to address the substance abuse treatment needs of clients in the context of palliative care. Based on the experience of the SPNS palliative care demonstrations, persons with substance abuse disorders tend to access HIV care services late in their disease and to have significant symptoms related to drug abuse. The diagnosis and treatment of substance abuse and of related comorbidities are critical to effective treatment and management of HIV disease.

Additional Resources

Financing Palliative Care and Hospice Services

Palliative and hospice care services tend to be financed through a mixture of various resources, including Federal health benefits programs (Medicaid and Medicare), Federal and local discretionary health programs (including the CARE Act), and individual and family contributions. No single Federal or local budgetary or financing mechanism is currently available to sufficiently cover the complete cost of the full spectrum of palliative and hospice care. Thus, CARE Act grantees and providers will need to identify diverse funding mechanisms to develop and sustain palliative and hospice care programs.

Medicare and most State Medicaid programs’ coverage for hospice services for PLWH/A are restricted to end-of-life care and for specific types of providers, services, and delivery sites. This is primarily because of the programmatic and health-specific eligibility requirements of those programs. Commonly, other than people who qualify because of their age or disability, PLWH/A are not eligible for Medicare until AIDS develops or they experience significant impairment or disability. Medicaid eligibility is based on income and other criteria that vary considerably from State to State. Even when people do qualify for one program or the other, full palliative and hospice benefits are not guaranteed.

To receive hospice benefits under Medicare, recipients also must demonstrate two specific conditions: They must have a life expectancy of less than 6 months, and they must be willing to forgo curative treatments. Eligibility for Medicaid coverage often is fashioned after the Medicare Hospice Benefits requirements. For HIV disease, however, a fine line separates palliative from curative treatment. For example, at times it is appropriate to administer antiretroviral therapy to ease HIV’s symptoms.

Medicare’s coverage for palliative care services is limited for PLWH/A. Medicare tends to link benefits and payment to a specific site of service rather than to the needs of the client. Allowable services often are restricted to expensive inpatient care and treatments and are unavailable for outpatient palliative or custodial services necessary for the patient’s care outside of the hospital. Payment for Medicare services also is dictated by time limits and can include high cost-sharing provisions for eligible clients.

Patients who do fit the 6-month life span and noncurative treatment criteria can be eligible for a broad range of services that are covered through Medicare’s hospice benefits. For example, coverage is provided for caregivers, including physicians, nurses, therapists, home health aides, clergy, social workers, and counselors. Outpatient drugs, respite care, custodial care, and continuous nursing care in the home in case of emergencies also are covered.

Medicaid does ensure coverage for medications and other relevant home health care services. Medicaid beneficiaries may be covered (either through required or optional services) for a wide range of health-related services under the Medicaid program. These include inpatient and outpatient hospital services, services provided by skilled nursing facilities, physician services, medications, home health services, nursing home and intermediate care facility services, private day nursing, rehabilitative services, and others. Reimbursement rates for all Medicaid services are set by the States. Within States, rates can vary according to the use of managed care versus fee-for-service providers.

Some State Medicaid programs provide coverage for palliative care services for Medicaid-eligible patients; however, the need for palliative care services does not make a patient eligible for Medicaid. Those benefits are added to existing Medicaid benefits. Hospice benefits are State-optional benefit services and vary, therefore, in scope and intensity. Similar to Medicare, Medicaid coverage of hospice services tends to focus on late-stage and end-of-life periods rather than on the full spectrum of a person’s HIV disease.

Finally, general nonhospice care Medicare and Medicaid services must be delivered by specific types of providers, based on Federal and State licensure and certification requirements. For example, Medicaid would not pay for a peer or a “buddy” to go to a home to provide services. Additionally, services can be provided only to Medicaid-enrolled clients. Thus, services for Medicaid-ineligible family members, such as bereavement counseling, would not be supported. Medicaid also generally does not cover basic non–health care services (e.g., transportation, legal advocacy, or child care).

CARE Act funds can be used to fill some of the financing gaps left by the restrictions in Medicare and Medicaid coverage. CARE Act funds can be used to treat people at any stage of HIV disease, and they do not require people to commit to particular treatment approaches (curative versus palliative). More important, CARE Act funds can be used for essential support services that are intrinsic to palliative care, such as spiritual counseling, mental health and family counseling, and legal advocacy, delivered by family members, peers, and a wide range of professionals.

As noted, however, several CARE Act provisions limit or otherwise restrict the use of CARE Act funds for palliative care services. Those provisions are detailed in the next section. In addition, it is important for grantees and providers to comply with several fiscal requirements established by the CARE Act—specifically, the payer-of-last-resort and supplantation provisions. Refer to the appropriate CARE Act policies for clarification on these and other financing issues. Notwithstanding the restrictions, there remain ample opportunity and flexibility to use CARE Act funds to fill in gaps in financing and establish a continuum of palliative and hospice services to span the lifetime of a PLWH/A.

Reflective of the fragmentation of the U.S. health care system, the financing of palliative care services is complex and incomplete. In 2003, HRSA published its Clinical Guide to Supportive & Palliative Care for HIV/AIDS, which provides a legal and financial overview of how to gain access to palliative care (mostly hospice services) through public benefit programs (Medicare, Medicaid, and Veterans Administration programs). Other publicly or federally funded evaluation projects (including that of the Robert Wood Johnson Foundation, the CARE Act SPNS demonstration projects, and the Mount Sinai Hospital’s Comprehensive Guide for the Care of Persons With HIV Disease) provide information on the delivery and financing of palliative care services for PLWH/A.

Additional Resources

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