November 30, 1999
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:
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:
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:
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:
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:
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:
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:
Clinicians should have a specific clinical pathway for persons recently released from jail or prison. The clinical pathway should involve the following immediate actions:
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.