Additional barriers abound, in-cluding lack of financing, un-informed and untrained providers, and a misunderstanding of the relationship between "curative" and palliative treatment. Although the SPNS models are serving people living with HIV disease, findings related to these and other HRSA projects will have broad applications for health care in general.

Why all of this increased attention to palliative care?  Isn't palliative care the same as hospice care? At a time when treatment alternatives are better than ever, should we focus on palliation and comfort? What is palliative care, anyway? In this article, we endeavor to answer these questions and to provide a context for the agency's increased attention to palliation and support.

Palliation and support: why the focus?
Remarkable advances in medicine over the past 50 years have dramatically reduced the impact of many diseases.  Greatly improved health status and substantially increased life expectancy have occurred, but these advances have been accompanied by less desirable consequences; while death from "quick killers" such as pneumonia and renal failure has been reduced, death from painful "slow killers," such as cancer, is now more likely. 

The American health care system is organized to cure.  It is not well structured to provide palliative and supportive services to individuals who have chronic, progressive conditions that are ultimately terminal.  Neither is it set up to provide curative and palliative care simultaneously, even though both are critical components of comprehensive care.  In the United States, palliative care is generally available only through hospice, when curative treatment has been abandoned, and during the last 6 months of life—the period in which Medicare will reimburse palliative care costs. Although people with terminal disease may live much longer than 6 months, neither the American medical system nor insurers have responded to the need for palliation and support throughout the course of serious illness.  Hence, America associates palliation with death. 

A prominent exception to the general medical system in the United States is the array of services available to people living with HIV/AIDS. As the epidemic emerged, individuals encountered a medical system that was ill-equipped and often uninterested in responding to the needs of people dying from AIDS. AIDS patients were ostracized and had no place to turn for housing, food, or support services.  Not only was there no treatment, but access to mental health services, spiritual support, and resources for meeting basic needs were limited.  People with AIDS died in pain, in poverty, and alone. Communities responded by creating networks of services that may represent the Nation's most advanced programs for delivering supportive and palliative care to individuals and their families throughout the course of disease, not just at the end of life. 

AIDS is a fatal but treatable condition, blurring the distinctions between aggressive treatment and palliation.  Moreover, some supportive services overlap with components of palliation, and are critical care components for individuals with HIV disease from the time of diagnosis. This factor extends the traditional timeframes for providing palliative care.  The CARE Act system is unique in that it recognizes that the distinctions between active treatment, palliation, and support are fluid, and it responds to people's needs when they emerge. Mitigation of physical, psychological, practical, and spiritual suffering is paramount throughout the course of disease. 

The HIV services community's knowledge regarding supportive and palliative services and the American public's desire for a more responsive health care system are now converging.  Americans are redefining health care, and insurers and providers are struggling— sometimes reluctantly—to keep up. Patients and their families are looking to the medical system for more than cures; they want services that minimize the impact of illness and disease in their daily lives. These desires are reflected in the activities of organizations like Project on Death in America, Robert Wood Johnson Foundation, and the nascent American Academy of Hospice and Palliative Medicine.  As a consequence of these developments, the concept of palliation, which came out of the 1960s movement to improve pain management in cancer patients, is being turned on its head.  Comfort and support for the patient and family are no longer simply end-of-life matters, but are increasingly valued components of care in all stages of serious illness.

Palliative care: Hospice and more
In America, the concept of palliative care is strongly associated with hospice for several reasons. Palliative services are not reimbursed by most insurers; Medicare will not cover hospice until curative treatment has been abandoned and a physician has determined the patient's prognosis to be 6 months of life or less. Where available, palliative care has mostly been provided by hospice agencies. Moreover, many organizations identify themselves as providers of "supportive care" but not "palliative care," even though many of the services they offer contain components of both. Finally, palliative care is strongly associated with pain management, and pain management is viewed as a primary function of hospice—another reason that palliative care and hospice are synonymous in the minds of many.  

Palliative care today
Palliative care has evolved considerably since its inception 40 years ago, and associating it primarily with hospice and pain management yields an incomplete picture of the field.

Essential components of palliative care are: 

• Pain and symptom control;
• Effective communication regarding treatment and prognosis;
• Rehabilitation services;
• Comprehensive care that addresses treatment and palliative concerns;
• Terminal care;
• Support in bereavement; and
• Education regarding treatment alternatives, available services, and decision-making.

The care team
Palliative care is the unification of science, compassion, and spirituality.1 Therefore, palliative care—like comprehensive medical care—should be provided by a multidisciplinary term, with each member addressing a particular care component while collaborating with partners to make care decisions.  The team always includes the patient and family as primary participants in the decision-making process. 

The intersection of palliative and supportive care
Traditional models for palliative care reflected abandonment of proactive treatment and a simultaneous increase in symptom control and comfort-related services, as a disease progressed in linear fashion through four stages: diagnosis, distress, discomfort, and dysfunction.  These models are not applicable to the treatment of many diseases; HIV disease and certain cancers are illnesses in which stage of disease is cyclical, not linear.  The patient moves in an out of periods of well-being and distress, and the need for palliation and support fluctuates over time. 

This fluctuation highlights the relationship between palliative and supportive care.  Counseling and treatment education, for example, which may be considered to be both palliative and supportive services, extend the period of well-being. Patients experience improved psychological and emotional health, a better understanding of treatment, and improved adherence; these services also improve a patient's ability to cope with the implications of their condition. Moreover, supportive services like housing assistance and case management improve treatment outcomes, thereby delaying the need for some palliative services such as home care.  For these reasons, the need for both palliative and supportive services should be evaluated in the context of the comprehensive care requirements of patients and their families.

Access to palliative and supportive services
Lack of insurance programs to cover costs is just one reason that, in the United States, palliative and supportive   services are still rarely available except at the end of life.  Recognition of palliative care as a medical specialty in the United States is just beginning, and access to training is limited. 

Palliative care is more accessible in other countries.  In Great Britain, for example, it is an established medical specialty and patients may be referred to practitioners regardless of their stage of disease. A newly diagnosed prostate cancer patient may be referred to a palliative care specialist, even though the cancer is treatable or even curable. The specialists and the care team then provide the emotional, educational, and spiritual support to the client and family that is essential for managing the impact of the disease on their lives, the distress associated with receiving the diagnosis; the confusion regarding treatment alternatives and decisions; the challenges of managing symptoms, pain, and treatment side effects; and the emotional and psychological fallout from living with a life-threatening illness. In this scenario, palliative care is treatment affecting quality of life, not quality of death.

Palliative and supportive services and HIV disease
"There's this ridiculous pharmaceutical video and everyone skipping through fields  image . . . and it just has nothing to do with the experience of having AIDS. Or like [name of magazine]; everyone is beautiful, and then mysteriously they die. I'm extremely critical of this [way of looking] at AIDS. We [people with HIV] have bought right into it. There's so much unwillingness to . . . see it as a fatal illness and to talk about what that looks like."⁵

Advanced Care Planning Participant
Source:  Archives of Internal Medicine

People living with HIV disease face impaired functioning and debilitation at startlingly young ages; traditional mechanisms for decision-making and treatment do not meet their needs.  Over time, new systems for making health care treatment decisions and delivering supportive services have been developed and, in the process, the concepts of community, family, and essential services have been redefined.

The need for palliative and supportive services throughout the course of disease is more widely acknowledged now than it was 10 years ago, when the Ryan White CARE Act was first passed by Congress.  But the role of these services continues to evolve. Because treatment alternatives have improved, HIV disease even more rarely fits traditional models for initiating palliative care. And,"As the degree of disease, distress, discomfort, and dysfunction waxes and wanes over time, there is a varying need for disease-specific therapy . . . and therapy focused on providing comfort, including symptom control, and support." ¹ 

The need is intense for palliative and supportive services among people with HIV disease.  Unaddressed, this can hasten disease progression and worsen the patient's quality of life.  The need for these services is also changing.  HIV/AIDS increasingly is associated with poverty and the epidemic is expanding among vulnerable populations; experience shows that when people's most fundamental human needs for housing, food, and support are unmet, they cannot stay in care.  Concurrently, there is still no cure for AIDS, which killed almost 20,000 Americans in 1998 alone; a need exists for help in coping with implications of terminal illness, addressing symptoms, and increasing comfort and quality of life.

Pain management and HIV disease: Is there room for improvement?
Even though people with HIV disease and their providers have played a leadership role in integrating palliative and supportive services into comprehensive primary care, pain management remains a persistent problem in the treatment of HIV disease.  Little information has emerged regarding pain management in people living with AIDS since the widespread introduction of highly active antiretroviral therapy, but a significant body of research through 1996 indicates that pain has not been treated appropriately in a large proportion of patients.2  There is evidence of a widespread reluctance to prescribe opiates, particularly among individuals with a history of addiction.  But pain management in HIV disease presents different challenges from those that occur in diseases where decline is linear and precipitous.¹⁰  "It's not talked about as much as it really should be," says Paul Volberding, MD, director of the AIDS program at San Francisco General Hospital Center and professor of medicine at the University of California San Francisco School of Medicine. "This is probably one of the main areas where we could really make a difference in the quality of life of AIDS patients." ³

Charting a course for the future
The HIV/AIDS Bureau is developing HRSA's response to palliative and supportive care needs.  Agency priorities are based on the premise that palliative and supportive services should be integrated into comprehensive care. HRSA's activities reflect recommendations of the Institute of Medicine (see box on page 5).

As this publication goes to press, HRSA and other U.S. Department of Health and Human Services (DHHS) agencies are collaborating with the U.S. Agency for International Development and the Department of Defense to respond to the epidemic in sub-Saharan Africa.  The response is part of the Administration's LIFE (Leaders and Investment in Fighting an Epidemic) Initiative for addressing the AIDS pandemic.  A central component is a $35 million increase in DHHS resources for fighting AIDS internationally.  The DHHS approach is comprehensive— from training and medications to surveillance and prevention. Palliation and support are important components.

HRSA has an important role to play in responding to the health care needs of vulnerable populations, including the need for palliative and supportive care.  By providing leadership in delivering care that is truly comprehensive, the agency can meet the needs of the millions of people it serves and set the standard for a Nation that today is questioning how it provides care. HRSA must also participate in the dialogue about what that care should include. Society's views on death are changing, but medical and insurance systems have not necessarily kept up, leaving rampant unmet needs for both treatment and services.  Meeting these needs is essential to preserving quality of life and coping with adversity.

Treatment advances mean that HIV disease increasingly is a chronic condition focusing on slowing progression and delaying onset of symptoms.  Nonetheless, it remains a terminal illness. Access to palliative care is essential, both when aggressive treatment is being pursued and when it is not.

However, traditional palliative care service models do not address the unique needs of HIV-positive people.    HIV/AIDS carries significant stigma, and some HIV-infected individuals are estranged from family and friends. Others have seen their support networks obliterated by the epidemic.  Ensuring appropriate care in the absence of informal support networks can be a formidable challenge at the end of life.   

Moreover, disease trajectory is episodic and unpredictable, making traditional models that associate palliation with linear and precipitous disease progression inadequate. Opportunistic infections and disease complications can increase in frequency, and then abate. Moreover, aggressive treatment and palliation and support may be indicated simultaneously, blurring the distinctions between palliative care and "curative" treatment.

Additional challenges abound.  For example, a homeless person with AIDS may spend his or her final days in a shelter where staff are untrained and not equipped to provide palliation and support.  Moreover, palliative care is not systematically accessible in traditional medical settings. The services that do exist are often fragmented, making continuity of care difficult.  Finally, palliative services are not reimbursed through most insurance programs except when "curative" treatment has been abandoned and the patient is believed to be in the last 6 months of life.

The Palliative Care Projects
The five projects are targeting diverse population groups.  The services offered vary, as do the sites where they are delivered, which include the client's home, a community hospice residence, community clinic, hospital outpatient clinic, hospital inpatient unit, hospital inpatient hospice unit, and jail. In each case the palliative care team is multidisciplinary. Key program personnel may include physicians, nurses, social workers, psychologists, clergy, health aides, addiction specialists, and outreach workers.

Evaluation and Dissemination
Evaluation and technical support are critical components of the Palliative Care Initiative and they are provided by a sixth grantee, Columbia University School of Public Health.  This centralization assures that grantees all have access to evaluation expertise. Projects will be assessed using indicators such as symptom management, quality of care, and quality of life. Efficiency and continuity of care may be measured by indicators that include emergency room visits, length of  "active treatment" hospital stays, and number of diagnostic tests.  Additionally, case study analyses will be conducted for each project, which will help providers and policymakers make decisions about initiating palliative care in their service settings. Results of the initiative will be distributed widely. 

Last year, Congress amended the Social Security Act to expand the availability of heath care coverage for working people with disabilities; on Dec. 17, the President signed it into law (P.L. 106-170).  This legislation aims to alleviate the dilemma faced by those who receive Social Security Disability (SSDI) benefits or Supplemental Security Income (SSI) aid for the low-income disabled.  Previously, if a disabled person returned to work, Medicare and Medicaid benefits were lost.  At the same time, they could not qualify for private health insurance because of their chronic health conditions. Given this choice, few returned to work.

With the new "ticket to work" law, beginning in 2001, SSDI and SSI disability beneficiaries will receive a "ticket" that may be used to obtain vocational rehabilitation (VR), employment, or other support services from an approved provider.  The law allows individuals who take a job to retain Medicare coverage (Part A premium free) for 8½ years, up from the previous limit of 4 years.

Disabled individuals who receive coverage under an employer's group health plan and are Medicare eligible may have their Medigap (or Medicare supplemental policy) suspended. If the group health coverage is lost and the disabled policyholder provides notice within 90 days, the Medigap policy must be automatically reinstated.

Effective Oct. 1, 2000, the law allows States to offer Medicaid to individuals with disabilities whose incomes would not qualify them for SSI (this includes disabled persons who received SSI payments and were eligible for Medicaid services in a State, if they met the disability guidelines and earned less than 250 percent of the Federal Poverty Level).  States may also continue coverage to workers with disabilities whose medical conditions have improved.  Disabled individuals may also buy into Medicaid under a sliding fee scale; no upper income limit exists, but those with higher incomes may be subject to higher premiums. A State may charge premiums with rates calculated on a sliding scale based on income, subject to Federal limits and requirements.

Grants are being made available ($150 million annually for 5 years) to encourage States to expand aid by conducting outreach and providing personal assistance to those who need it.   

Medicaid Waivers and HIV/AIDS Care
In February, the Secretary approved a Medicaid demonstration plan for Maine to launch an early intervention and treatment program for individuals in need who are HIV positive but do not yet have AIDS and who are not already eligible for Medicaid.  Maine is the first State to develop a demonstration waiver targeted specifically to persons with HIV who are not otherwise eligible for Medicaid and to provide them with a limited benefit package. 

This demonstration program will make drug therapies and treatment services available to HIV-positive individuals earlier in the course of their disease, delaying the onset of disability for many.

Maine's Medicaid agency plans to begin the 5-year demonstration project in October 2000.  To be eligible, a participant must be HIV positive and have an income of less than 300 percent of the Federal Poverty Level ($8,350 for a person under age 65). The benefit package will include prescription drugs, including highly active antiretroviral therapy, office visits, lab services, case management, inpatient hospital care, and mental health and substance abuse services.

Massachusetts submitted a request to modify its current Medicaid managed care waiver to include persons living with HIV who are not otherwise eligible for Medicaid and who have incomes up to 200 percent of the Federal Poverty Level.  Under the proposal, eligible persons with HIV disease would receive the full benefits of the Massachusetts Medicaid program, including coverage of pharmacy needs and mental health and substance abuse treatment.  Depending on an eligible person's employer, the State will pay premiums for health insurance either directly to the insurer or employer or directly to the individual, if it is cost effective.  In addition to premium payments, the State will provide "wrap-around benefits" for any service not covered under an employer's health plan. Massachusetts estimates that approximately 400 persons with AIDS and 800 persons with HIV (but not yet AIDS) would qualify for the waiver and enroll.

Medicare and CARE Act Programs
Medicare is the second largest payer of services for people with HIV/AIDS, yet we know little about the characteristics of the Medicare HIV/AIDS population, what services they utilize, and how they interact with CARE Act programs. The HIV/AIDS Bureau (HAB) has launched an initiative that will help providers learn more about the nexus between Medicare, Medicaid, and CARE Act programs.  Included in this project is a review and evaluation of available data; identification of demographic, clinical and utilization characteristics of Medicare beneficiaries with HIV/AIDS; and a discussion of the associated policy implications for CARE Act programs.  This effort also will look closely at people who are dually eligible for Medicare and Medicaid.

Flexibility in the Use of ADAP Funds
HAB has circulated to all CARE Act grantees a draft policy that would permit States, under certain circumstances, to use unspent ADAP funds for services that increase access to ADAPs, help improve adherence, and monitor patient progress with medications. This policy reflects the FY 2000 Appropriations Committee language requesting HRSA to permit this flexibility.  The final policy will be released early this summer. 

References and Publications

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