People who are young or old, homeless, new immigrants, incarcerated, or newly released from jail or prison may have needs that differentiate them from other people living with HIV/AIDS. Clinicians should recognize that these needs may prevent such people from following routine clinical pathways for palliative care. Individuals within each group have internal and external barriers to being in care. Recruiting and maintaining them in care requires personal contact and often involves outreach. Otherwise, patients may fall out of care and die too soon, in pain, and without support.
Young gay men and young heterosexual women, as well as people over 65 years of age, all have unique issues that may limit their access to palliative care. Even greater barriers are encountered by people who are homeless, those who have immigrated from other countries legally or illegally, and individuals who are incarcerated or recently have been released from jail or prison. People with substance abuse problems, who also experience barriers to care, are discussed elsewhere in this guide. (See Chapter 11: Substance Use Problems.)
A need common to all these individuals is assurance that their healthcare providers understand and accept their particular circumstances. Establishing a trusting relationship is often critical before they will accept care. The following recommended interventions are applicable to all of the vulnerable groups discussed in this chapter and can be crucial in establishing trust and promoting the individual's engagement with care:
Establish a personal connection with the individual during the initial visit.
Arrange for the person to meet with a case manager, social worker or outreach worker during the initial visit.
Obtain contact information for at least two people close to the person so that if she or he does not return, follow-up can occur.
Arrange to be in contact with the person the day following the first visit, at least by phone if not by return visit.
Providing palliative care to special populations has an additional level of complexity. Many people who are marginalized from society and already underserved by the health care system have become mistrustful of "the system" or have difficulty understanding the HIV disease process, much less the highly technical aspects of highly active antiretroviral therapy (HAART). People who belong to marginalized groups may perceive palliative care as second-class care, which they are being offered instead of aggressive acute medical care. Palliative care should be the result of an individual's empowered choice. The importance of gaining the trust of individuals in special populations becomes even more apparent when this dimension is added.
The Young and the Old
The young and the old can have developmental, generational or cultural issues that may keep them from seeking and remaining in care.
Adolescents feel omnipotent and immortal, have not completely internalized the concepts of cause and effect, and may mistrust adults in authority. A common adolescent response to a diagnosis of HIV, which is often given by an adult, is to reject the diagnosis, believing that avoiding the issue is avoiding the illness. For young gay and bisexual men, fear of their sexual orientation being revealed because of a diagnosis of HIV might also prevent their seeking care. (See Chapter 12: The Care of Children and Adolescents.)
Young mothers tend to allow their babies' care to take precedence over their own. If they are in denial that they might die, young mothers may avoid planning for the guardianship of their children. (See Chapter 18: Legal and Financial Issues for discussion of permanency planning.)
The following interventions may promote adolescents' acceptance of care:
Offer to assist them with making decisions about disclosure of their status to parents, children and other family members.
Arrange for peer support by other teens living with HIV if possible; otherwise, link them with other teens via the Internet.
Begin discussions with adolescent mothers about who will care for their children; bring in other team members and agencies to assist them with permanency planning.
Other services that can facilitate a teen mother accepting care for herself include parenting skill classes, respite care, family support and homemaker services.1 Resources for training staff about permanency planning are the National Pediatric and Family HIV Resource Center (www.pedhivaids.org) and The Family Center (www.thefamilycenter.org).
Senior citizens may not seek care because they fear the stigma of HIV/AIDS as well as because they may be dealing with other health problems. The initial discussion of palliative care might confirm their fears that "nothing more can be done for them." If they have been receiving care at a private physician's office, they may feel uncomfortable in a clinic situation. For older gay men, who may have lived a "closeted" lifestyle, sharing their sexual orientation with health care providers may make them uncomfortable. For example, an older gay man may not be comfortable receiving palliative care at home because he doesn't want his providers to know he lives with his partner.
For people with HIV who are older, the following interventions may be useful:
Encourage them to contact the National Association on HIV Over Fifty (NAHOF), an organization for both consumers and providers that has a newsletter (www.hivoverfifty.org/).
For patients who resist receiving palliative care services from an HIV-associated hospice agency, consider having their primary care clinicians provide the palliative care with consultation from a palliative care expert or agency when needed.
For men who are gay but closeted, indicate acceptance of gay relationships by speaking openly with both partners, acknowledging the importance of their relationship and assuring respect for their privacy.
People Who Are Homeless
A good definition of homelessness is not having a stable residence in one's name. The term homeless applies equally to a person who has a temporary hotel room paid by a city program for indigents, a person sleeping in a shelter or in a car, and a person who is staying with a relative because she or he cannot afford to pay rent. People who are homeless are as varied in socioeconomic, ethnic and demographic characteristics as the general population; most lack stable housing because of their economic situation.2 However, a high proportion of those who are visible on street corners in cities and towns across the U.S. suffer from mental illness, chemical dependency problems, or both.
In some cities, mobile vans or walk-in clinics bring services to the most visible people who are homeless, but in most cities the people must come to the services instead. They often wait until their health problems are quite severe before going to emergency rooms for help. Palliative care, which is by definition continuous and involves an ongoing relationship between the provider and patient, may not be a familiar process.
Providing palliative care to people who are homeless is difficult because of the multiple physical, economic and social problems they already face and because of their transience. However, they have the same emotional and spiritual needs as others and can benefit greatly from this type of supportive care throughout the trajectory of their illness.
To provide palliative care to people who are homeless, the clinician may have to address a number of practical matters. The interventions suggested at the beginning of the chapter are essential. Having social workers, case managers, outreach workers and pastoral care providers on the team facilitates these interventions and increases the possibility of linking homeless people to services that can meet their basic survival needs. The following interventions may also help to improve treatment outcomes:
Relax the clinic structure for people who are homeless.
Individuals who are homeless may be unable to keep appointments. Make exceptions for certain people, seeing them on a drop-in basis for more frequent, shorter visits. Offer incentives such as food vouchers when they come for appointments to increase their motivation to obtain health care on a regular basis rather than only when emergencies occur.
Assess all new patients for homelessness.
When assessing new patients, assume that they might be homeless or living in temporary quarters. Ask whether they go home to the same place every night, and whether they have a permanent address where they can be contacted.
Consider prescribing small amounts of medication.
Ascertain whether they will be able to keep their medications safely. Some shelters or group homes will set out residents' pills each day. Pain medications may need to be provided in smaller quantities than usual to prevent theft or loss.
Address specific issues pertaining to adherence with HIV medications in homeless individuals.
Certain medications require refrigeration (e.g., ritonavir), may need to be taken with food (e.g., nelfinavir, ritonavir), or may require large amounts of fluid intake which can pose problems if there is limited access to toilet facilities (e.g., indinavir). All of these practical considerations, which can be very challenging for homeless patients, with a predictable adverse impact on adherence, should help inform decisions about choosing specific treatment regimens.
Monitor closely and frequently.
Be especially concerned about adequate nutrition, appropriate hygiene and wound care, and the need for personal care. Be ready to hospitalize homeless people more frequently than other people living with HIV for conditions such as malnutrition, exposure and wound infection.
Link with food programs.
Linking homeless individuals with food programs is an important intervention. In addition, obtaining food or food vouchers to provide to people at clinic appointments can increase their attendance.
Link with housing programs.
Clearly, arranging for housing facilitates more effective palliative care for the homeless. Even if the person rejects housing, anticipate the possible need for a protected environment in the future, such as a long-term care facility, and work slowly towards that goal.
Be honest and frank.
Be willing to be honest with people who are homeless. Make attempts to refer them to mental health and/or substance abuse services if their condition appears to warrant such assistance. If they are engaging in self-destructive behaviors, explain how these behaviors are shortening their lives. Have a knowledgeable member of your team discuss the merits of harm reduction with both the patient and other staff members.
Educate about the expected course of disease.
Patients may feel that seeking care is useless if they believe they are dying. Discussing the stage of their illness allows them to begin to gain control of their own situation. Offer simple, concrete suggestions about self care. Sometimes physical deterioration and chronic pain, or the sudden real prospect of death, can be turning points that motivate people to make startling changes. A person might for the first time accept pastoral counseling, substance abuse treatment, or housing in a hospice facility.
Discuss advance directives (a medical term not often understood by those outside the medical system).
After forming trusting relationships, it will be possible to ask homeless persons if they have thought about what might happen to them at the end of life. Many clinicians tend not to ask about this, perhaps assuming that homeless people have limited capacity. However, this denies individuals the opportunity to address the issues of how they want to live and to die. This is another potential turning point for a person taking control of her or his life. If the person is not in contact with family, it is helpful to ask whether there are friends or others who should be contacted if the person becomes ill.
Emotional and Social Support
Homeless people frequently have been estranged from their families of origin and from spouses and children. However, when they are dying, they may want to re-establish connections with their families and attempt to mend fences. Clinicians should always ask whether homeless persons would like to have their family members contacted when it is clear that they are not expected to get better. Although some health care providers may feel uncomfortable asking or may not think to ask, resuming contact with family members may be an important aspect of an individual's closure. If a palliative care team is in place, any team member who is trusted by the patient can ask the initial question and bring in others to share responsibility for following through on the patient's wishes.
It is important to remember that reconciliation can be time-consuming. Not only may the homeless person need support, but family members who are contacted may feel guilt because of the estrangement and may need support as they re-establish relationships with the homeless and dying individual.
Shelter Staff as Surrogate Family
For many people who are homeless, the staff of shelters and other service agencies become support systems. These may be the most consistent, nonjudgmental people in their lives, and the ones from whom they want comfort when they are dying. It is therefore important to find out who should be contacted and included in an individual's care team. In fact, shelter and other service agency staff may need a support group or other bereavement services, either because of their involvement in a single individual's care, or because they are experiencing multiple losses as numerous clients with HIV become sick and die. The stress and distress of being unable to do more for people who are homeless and dying can take a terrible toll on social service providers in community-based agencies. (see Chapter 20: Care for the Caregiver.)
Other Homeless People
Some people who are homeless have close relationships with other homeless individuals who have become their families and may become dying person's caregivers in his or her last days. For this reason clinicians should respect and support close personal relationships, while also being alert to potential abuse, such as a "friend" taking the patient's pain medications herself or himself.
Incarcerated Family and Loved Ones
For homeless people who recently have been released from jail or prison, their closest relationships may be with people who are still incarcerated. This may be an unfortunate result of "compassionate release" for the dying. Other homeless people may have close family members who are in jail or prison. Resolving this isolation is difficult, because the penal system rarely allows prisoners to visit family members on the outside, much less loved ones who are not related, even when those people are dying.
Spirituality is an important aspect of the lives of people who are homeless. Many grew up in families that were deeply religious, and even if they are not actively practicing today, they may carry those religious beliefs with them. Others have been exposed to the spiritual principles of 12-Step programs such as Alcoholics/Narcotics Anonymous and find support and comfort in a higher power. Addressing the spiritual aspects of palliative care is as important with the homeless as with other people.
Clinicians should inquire about the religious background and current spiritual beliefs of people who are homeless. Sometimes this is the first step toward bringing in other members of the palliative care team, such as pastoral counselors or clergy. Asking these questions not only demonstrates personal interest in patients, but gives them permission to discuss this aspect of their lives.
People Who Are New Immigrants
Immigrants come to the U.S. and to other countries from all over the world. Many are from countries where the spread of HIV/AIDS has been exacerbated by poverty or civil unrest resulting in social dislocation and economic disruption; for example, Guatemala, Myanmar, Russia and Rwanda. Some come seeking safe asylum, while others seek educational and economic opportunities. They all hope for a better life for themselves and their children. However, some already have become infected with HIV.
People living with HIV who have immigrated to the U.S. from other countries may have cultural and legal issues that restrict their ability to access and accept palliative care. The cultural issues may include language barriers and differences between their cultures of origin and the mainstream culture upon which the American health care system is based. The legal issues relate to whether or not they are in the country legally and, if they are, whether their HIV status endangers their legal status and thus their access to benefits. An additional concern may be whether their visas allow them choices regarding whether to stay in the U.S. or to return home to die. Such issues are also relevant for immigrants in other countries.
Unless palliative care providers are sensitive to immigrant clients' cultural differences and can identify legal barriers to their clients' accessing care, they risk losing clients before follow-up or leaving them outside any system of care. The clinician's first intervention with people who may be immigrants should include assuring them that their relationship with the clinician and the health care agency is completely confidential. Only then will it be possible to determine each individual's situation and provide referrals to agencies that can provide immigration counseling and legal assistance. As with all special populations, obtaining contact information for family members or close friends is important so that follow-up can take place.
Immigrants may face many of the cultural issues common to minority groups in the U.S. (See Chapter 14: Culture and Care.) In addition, however, their status as immigrants may compound some of the issues they face, as opposed to people who have lived in the community for a long time.
Immigrants often do not speak English, especially when they first arrive. If they come to a large community of people from their country of origin, that community may have interpreters within the health care system. However, language barriers may compound other cultural differences between individuals and their care providers. Language difficulties may also make it more difficult for them to sort out the complexities of the system upon which they depend for health care.
In many traditional cultures, strong extended family networks provide support when members become chronically or terminally ill. When individuals, or even nuclear families, move to another country, they leave these family networks behind and are left without the physical, financial and emotional support systems that would normally be available. Thus, recent immigrants are isolated at a time when they most need family help. Moreover, in many cultures where family privacy is valued, the concept of volunteers becoming involved in personal caregiving may be unacceptable.
The issue of burial is complicated for people who come from other countries and wish to be buried in their native soil. Advance planning can help facilitate this, if providers include some specific questions: When a person becomes terminally ill, does he or she want to return home to die to ensure burial there? If a person dies here and the family are available, will they be allowed to follow their religious and cultural practices in how the body is handled? If the family wish, can the body be sent back to their native country? If the cost is prohibitive, are there funds available from local agencies that might be used? If there are no family members, who will arrange for the body to be buried locally? What resources will pay for burial? If family arrive after the body has been sent to the morgue, what are the options?
Africans and African Americans
In recent decades, many people from Africa, the continent most ravaged by HIV/AIDS, have come to the U.S. to study and work. It thus comes as no surprise that some African immigrants are HIV positive. Moreover, some immigrants living with HIV come to the U.S. and other industrialized countries to obtain up-to-date treatment for their illness. Africans do not usually identify with African American culture; in many cases, they may be better educated than African American patients at the clinics where they receive care. They might feel uncomfortable if their health care providers were to treat them as if they were African American.
The legal issues confronting immigrants living with HIV may involve not only their status and legal right to remain in a country, but their ability to take advantage of the public benefits and entitlements available for citizens (see Chapter 18: Legal and Financial Issues). Two U.S. federal laws passed in 1996 created much more stringent regulations for immigrants.3 Immigrants need referrals to agencies that provide immigration counseling or to experienced immigration lawyers so they can learn about their legal options and the services that might be available to them.
People who are not citizens may have various types of legal status or no legal status at all. The U.S. Illegal Immigration Reform and Immigrant Responsibility Act of 1996 (also called the illegal immigration reform bill) established procedures for determining the admissibility of immigrants. Even non-citizens who are legally in the U.S. may risk being deported by the Immigration and Naturalization Service (INS) because of their positive HIV status. It is essential that noncitizens talk to an immigration law expert before speaking to the INS. In addition, it is essential that health care providers be able to assure their clients that everything they say, as well as everything in their medical records, will be kept confidential and not reported to the INS.
The U.S. Personal Responsibility and Work Opportunity Reconciliation Act of 1996 (which created the welfare-to-work program, TANF, described in Chapter 18: Legal and Financial Issues) established new and complex eligibility rules for public benefits for legal immigrants. This law also made several categories of previously eligible legal immigrants ineligible for most federal public benefits. The illegal immigration reform bill established certain procedures for determining the admissibility of immigrants and heightened immigrants' fears that using public benefits, even legitimately using Medicaid, could jeopardize their ability to become legal permanent residents or U.S. citizens. A recent study determined that immigrants are less willing to apply for Medicaid, even if they are eligible, or to access primary care as a result of these laws. Barriers such as poverty, language differences, and lack of transportation compound the difficulties for immigrants in accessing public benefits.4
Although local resources are absolutely necessary for individuals needing legal counsel, the following national resources may be useful for clients in the U.S., as well as for providers attempting to understand their clients' problems:
The National Immigration Project of the National Lawyers Guild published an updated version of HIV and Immigrants: A Manual for AIDS Service Providers, funded and distributed by the San Francisco AIDS Foundation.3 The manual provides a comprehensive and detailed presentation of issues and is available free of charge from the San Francisco AIDS Foundation, P.O. Box 426182, San Francisco, CA 94142; phone (415) 487-3080, fax (415) 487-3089, www.sfaf.org/policy/immigration/appendix_c.html.
For referrals to local immigration advocates or for a legal training packet designed for immigration practitioners, contact The National Immigration Project of the National Lawyers Guild at (617) 227-9727 or email@example.com. The project lacks the resources to assist individual clients but will provide advice and information to AIDS service providers.
To receive an update on public benefits and the rights of non-citizens arrested by the INS, you can e-mail the above-mentioned National Immigration Project at firstname.lastname@example.org. Include the following information: name, organization, address, city, state, zip code, telephone, fax and e-mail address.
The Immigration and Refugee Services of America (IRSA) Medical Case Management Program provides technical assistance to organizations that are resettling refugees with special healthcare needs. In the current phase of the program, IRSA is working with national and community based resettlement agencies to enhance organizational capacity to provide care for HIV-positive clients and to create partnerships with AIDS service providers. Call (202) 797-2105 or contact email@example.com.
People Who Are Incarcerated or Newly Released
More than two million people are currently incarcerated in jails and prisons in the U.S. African Americans and Hispanics constitute an overwhelming 75% of all new admissions. In 1997, an estimated 8,900 inmates had AIDS and 35,000 to 40,000 inmates were living with HIV, representing a prevalence of infection and disease five times higher than that of the overall population. The HIV rate among inmates is disproportionately high for racial and ethnic minorities: rates are as high as 11.3% and 11.1% among Hispanic and African American inmates, respectively, compared to 3.7% among white inmates.5 The proportion of inmates living with HIV varies by region as well as by institution.
As the management of HIV has improved with antiretroviral therapy, HIV has become a chronic as well as terminal illness; in either case, palliative care is an important aspect of care. Providing palliative care within correctional institutions poses unique challenges. The concern for security in jails and prisons determines how medical care is provided in those settings. Palliative care, with the goals of preventing further deterioration and maximizing the patient's comfort and function rather than curing disease, is less readily adapted than primary medical care to the rigid hierarchical structure and culture of a corrections environment.6 For example, for security reasons it may be appropriate for most inmates to be transported in shackles. While putting a dying inmate in shackles would be unnecessary and unreasonable from a health care standpoint, corrections protocols may require such treatment.
In 1976 the U.S. Supreme Court ruled that prison and jail inmates have a right to health care while incarcerated.7 However, palliative care is difficult to provide behind bars in a manner that meets both the individual's need for symptom relief and the institution's need for security and control.
By definition, compassionate care requires deviation from the correctional norm whose goals are segregation, stigmatization, and punishment. Dying inmates need increased medical attention, expanded visiting hours with family and clergy, access to special foods, and relaxation of routine restrictions.8
Jails and prisons differ in both structure and motivation in terms of how they provide medical care to inmates. Jails are temporary quarters for persons who have been arrested and are awaiting trial, and turnover is generally fairly rapid. Therefore, with nonacute medical problems, cost-shifting can occur; if a medical problem is not immediately addressed, the inmate may be discharged without the jail having expended resources. Prisons, on the other hand, are permanent quarters to which people are sentenced for long periods of time. The prison assumes responsibility for financing health care, even if the person would be eligible for insurance such as Medicare on the outside. Therefore, it is in the interest of a prison to provide or manage their inmates' health care rather than refer inmates to outside health care institutions that will bill the prison for care provided.
Palliative Care in Correctional Institutions: Unique Issues
Whether a patient is in jail or prison, certain issues affecting palliative care stand out:
If patients are to provide true informed consent for palliative care, they must also be assured of continued access to curative care. Medical prognosis combined with prisoner wishes and values will determine the relative balance of curative and palliative interventions. Palliative care should be an adjunct to curative care plans.
Protecting an inmate's medical confidentiality is difficult even when access to medical records is restricted to medical staff. Correctional staff, as well as other inmates, who observe an inmate being taken for special appointments or taking certain medications, can figure out his or her diagnosis. Also, corrections officers may be involved in discussions with medical staff about patient care for security reasons. Correctional staff should receive special training in safeguarding medical information. In some institutions, they are required to sign agreements regarding the protection of confidential medical information.
Medical advocacy and negotiation.
The clinician should be the advocate for the individual inmate in designing and pursuing a palliative care plan. However, the plan must be approved by corrections staff, who may not be willing to support the plan.
Providing access to appropriate analgesic medication is perhaps the most problematic area for clinicians providing palliative care within corrections.
The issue of advance directives is extremely delicate in penal situations, where self-determination is by definition abridged. Care providers must be assured that a patient's decisions are voluntary and uncoerced regarding access to and withholding of life-sustaining treatment. Health care proxy appointments risk setting up conflicts of authority in a correctional institution unless the proxies are family members or friends.
Compassionate release is the release of a terminally ill inmate to the community so that she or he can die in an appropriate setting, with appropriate care. Although the process of review for compassionate release exists in many institutions, it is often so time-consuming that most inmates die in prison before release is approved.9
Volunteers are used in prison hospice programs, and inmates benefit greatly from the opportunity to be trained and volunteer within prison hospice programs. Nevertheless, the possibility for abuse exists, especially for volunteers to be used rather than professional staff.
Instituting hospice programs may provide the specific services needed by inmates who are chronically and terminally ill, but it also creates a problem. Clustering inmates requires that many of them be moved from the institutions in which they have been housed. This separates them from others with whom they may have formed close bonds. If a state has only one hospice program, a patient/inmate may be taken to an institution very far from family and close friends in his or her community, further isolating the patient at a time when he or she most needs the support and comfort of loved ones.
The boundary between correctional health care systems and health care systems that inmates re-enter upon discharge into the community is distinct. Because it is impossible to make pre-release application for Medicare or Medicaid, inmates experience a hiatus in medical coverage between incarceration and their return to the community. Programs on the outside that facilitate discharge planning for soon-to-be-released inmates find that the work is labor-intensive and linkages are difficult to establish.
Standards of Care
HRSA has funded the development of standards of care for palliative care in correctional institutions by the American Public Health Association (APHA), the National Commission on Correctional Health Care (NCCHC), and Guiding Responsive Action for Corrections at End of Life (GRACE). Copies of the APHA standards are available from the APHA publications department, (202) 777-APHA. The GRACE Project standards can be obtained by phone, (703) 341-5000, or on the Web at www.graceprojects.org. The GRACE Project, part of the non-profit agency Volunteers of America, also has other resources for end of life care for incarcerated or recently released people living with HIV/AIDS. These include a handbook for caregivers and managers, a brochure on grief for people in prisons or jails, articles, and a videotape for training institutional staff.10, 11
Clinical Pathway for the Recently Released Inmate
The transition from a correctional facility to the community often involves a break in the continuity of health care. A red flag should immediately go up when a person who has just been released from jail or prison presents for care, with the following concerns in mind:
The person may have been discharged from the facility because he or she was in advanced disease.
If the person has been prescribed antiretroviral medications, he or she may have only a few days' supply or none at all.
The person may have no one in the community for support and thus may have no resources or place to stay.
If the person is chemically dependent, his or her first impulse may be to seek drugs to relieve the anxiety of so much uncertainty.
Clinicians should have a specific clinical pathway for persons recently released from jail or prison. The clinical pathway should involve the following immediate actions:
Obtain a baseline assessment and lab work immediately.
Connection with social services staff.
Arrange for the person to meet with a case manager or social worker during this visit, and establish contact with an outreach worker. Expect the person to need to apply for a range of entitlements and services, especially emergency housing.
Reconnection with family.
Identify at least one family member and begin the process of reconnection.
Continued personal contact.
Make a plan for how to maintain contact. Do not expect the person to return in two weeks for a follow-up visit; agree to have a next-day conversation.
Linking Recently Released People With Community Care: Models
The U.S. Health Resources and Services Administration HIV/AIDS Bureau (HRSA/HAB) Special Projects of National Significance is collaborating with the Centers for Disease Control and Prevention on an initiative to develop models to enhance prevention and care services for incarcerated people at risk for HIV or living with HIV.12 Two key components of the model programs that link inmates to community services are discharge planning while the inmate is still in prison or jail, and case management either inside the institution or outside in the community. For HIV-positive prisoners in the San Francisco County Jails, for example, The Homebase Project arranges to have a case manager meet individuals at the gate when they are released and provides them with up to three months' housing in a single-room occupancy hotel, while linking them with social and medical services in the community. This immediate assistance is an excellent example of an intervention for the clinical pathway described above. While incarcerated individuals in the early stages of HIV disease may benefit from such interventions, persons with advanced HIV disease are in even more critical need of the continuity of care that such interventions afford. Unfortunately, these models are not the norm at correctional facilities in the U.S.
Burr CK, Lewis SY. Making the Invisible Visible: Services for Families Living with HIV Infection and Their Affected Children. National Pediatric and Family HIV Resource Center, July 2000. Available at www.pedhivaids.org.
Song JY. HIV/AIDS and Homelessness: Recommendations for Clinical Practice & Public Policy. Nashville, TN: National Health Care for the Homeless Council, Inc., 2000. Available at www.nhchc.org/Publications/.
National Immigration Project. HIV and Immigrants: A Manual for AIDS Service Providers. San Francisco: San Francisco AIDS Foundation, 1997. Available at www.sfaf.org/policy/immigration/.
Maloy KA, Darnell J, Nolan L, Kenney KA, Cyprien S. Effects of the 1996 Welfare and Immigration Reform Laws on the Ability and Willingness of Immigrants to Access Medicaid and Health Care Services. Washington DC: Center for Health Services Research and Policy, George Washington University Medical Center, May 2000. Available at www.gwhealthpolicy.org.
Special Projects of National Significance Report on New 1999-2000 Initiatives: Update for Ryan White CARE Act Grantees. Rockville, M.D.: Health Resources and Services Administration, September 2000.
American Public Health Association Standards for Palliative Care, Pain and Symptom Management. Washington DC: American Public Health Association (in press).
Estelle v Gamble, 429 U.S. 97.
Dubler NN. The collision of confinement and care: End-of-life care in prisons and jails. J Law Med Ethics 26:149-56, 1998.
Beck, JA. Compassionate release from New York State prisons: Why are so few getting out? J Law Med Ethics 27:216-33, 1999.
The GRACE Project. End-of-Life Care in Corrections: A Handbook for Caregivers and Managers. Alexandria, VA: Volunteers of America, 2001. Available at www.graceprojects.org.
The GRACE Project. Standards of Practice for End-of-Life Care in Correctional Settings. Alexandria, VA: Volunteers of America, 2000. Available at www.graceprojects.org.
Special Projects of National Significance: 2002 Report on Thirteen Initiatives. Rockville, M.D.: HIV/AIDS Bureau, Health Resources and Services Administration, 2002.