Working on the Edge:
Palliative Care for Substance Users with AIDS
Val Robb, Visiting Nurses and Hospice of San Francisco, San Francisco, California
In discussions throughout the US, nurses and social workers cited the same areas of concern: How can we provide hospice care for persons for whom AIDS is just one problem in a long list of overwhelming, life-threatening concerns? How to find resources to work with clients? How to prevent burnout? Hospice workers are providing this care in a variety of settings, both urban and rural, against a host of obstacles. The intent of this article is to provide a framework to continue the discussion on how to provide palliative care to socially marginalized persons.
This article draws on my experience as a member of the AIDS and hospice teams of Visiting Nurses and Hospice in San Francisco (VNH), which has provided care to people with AIDS since the beginning of the AIDS epidemic. In 1990 we responded to a call to develop services for drug users living in a single-room occupancy hotels (SROs) in downtown San Francisco. It was our specific challenge to adapt the hospice model of care to the urban drug culture. We found that the model fit quite well. That project has been written up in an article entitled "The Hotel Project: A Community Approach to Working With AIDS" (1), which highlights case studies and specific approaches to working with active substance users who have AIDS, dementia, and psychiatric illness. Other team members have worked extensively with unilingual populations who are marginalized by issues of language, race, and money.
Any discussion of providing care to socially marginalized individuals must begin with an acknowledgement of discrimination. Caregivers must have a working knowledge of diversity issues and sensitivity to issues of race, culture, class, and gender. Most hospice organizations remain predominantly white, especially at the professional and management levels. This topic was the theme of the last US national hospice conference. Whether the impetus is from a humanitarian or a marketing perspective, hospices are recognizing the imperative of developing multicultural staff to work with and reflect the communities they serve.
To deal fully with the issues of providing culturally appropriate care to all the communities dealing with the challenge of HIV is outside the scope of this article. However, there are some specifics which can be addressed, based on the experience of VNH staff in working extensively with the Hispanic and Asian communities in particular.
Language barriers can limit access to health care. At VNH we have provided services to unilingual Spanish speakers, unilingual Cantonese, Vietnamese, and deaf clients. This care is provided by staff competent in these languages who are preferably bicultural as well. There remain large institutional issues to ensure that unilingual clients have access to all hospice and home care services such as bereavement, volunteers, and on-call support. Written materials have not always been available.
In a recent presentation for a national hospice organization, one of our bilingual, bicultural staff outlined the impact of anti-immigration initiatives on large immigrant communities. Undocumented persons are denied all but emergency health care, and fear of reprisal often prevents entire households from seeking medical care. When working with a woman with AIDS whose daughter is HIV-positive, he realized the children were being kept out of school due to the recent passage of a bill in California which limits the rights of undocumented people. This nurse emphasized that awareness of these pressures was crucial to being able to work with unilingual populations.
Hospice care can be viewed by low-income clients as a push towards less expensive care. When cultural issues are added, palliative care can be viewed as giving up on a person. For instance, many Asian cultures emphasize the role of family members to do everything possible for their family member. Staff must take time and care to allow clients direct input into choosing interventions. Hospice models must be culturally relevant.
Harm Reduction And Hospice
Hospice and harm reduction are two approaches to care; when combined they provide the framework for providing care to a diverse population of marginalized clients. Hospice philosophy emphasizes a patient-centered approach, meeting people in their own home setting, and establishing a multidisciplinary team. Harm reduction is identified as a set of strategies that encourages substance users and service providers to reduce the harm done by licit and illicit drug use. Where hospice has focused on clients with terminal illnesses, the harm reduction movement has focused on substance users at risk for or in early stages of HIV disease (2).
The harm reduction model is an alternative to models such as the 12-step program and drug treatment programs which insist on complete abstinence as the focus of treatment. Concrete examples of harm reduction are needle exchange and methadone maintenance programs. Community harm reduction efforts in Liverpool, England have resulted in a less than one percent HIV infection rate among substance users.
In the harm reduction model, the service provider assists the client in identifying his/her priorities and specific strengths. The client is seen as competent and his/her behavior seen as functional. The role of the provider, therefore, is to be a partner and a non judgmental ally in supporting the client to identify his/her most important concerns at that moment. For instance, when clients use illicit drugs during hospitalizations, harm reduction proponents might acknowledge these clients as resourceful rather than as failures: they had overcome huge institutional obstacles to see that their needs were met within a system that labels such behavior as "noncompliant" and "inappropriate".
When active substance users are hospitalized, they are usually not treated for drug withdrawal and craving unless they are heroin users and then they may receive methadone. Clients in the midst of drug craving often leave the hospital against medical advice because of this. No maintenance programs exist to treat methamphetamine and crack cocaine users. When the best the system has to offer a drug user with endstage AIDS is a month in a nonmedical detoxification program, the system is in trouble. While there are many drug users who do completely quit using drugs in the last few months of life, many others choose not to. Skeptics might consider this harm reduction approach to be synonymous with condoning illicit drug use, yet experience is beginning to show that this approach has widespread success in gaining trust and reducing harmful drug use behaviors. The following case presentation highlights these issues.
Presentation Of Patient
I met Sandra, a heterosexual Caucasian woman, a month after she was diagnosed with AIDS. She was living with her boyfriend and her 12-yearold daughter in a studio apartment in downtown San Francisco. Before she was diagnosed with AIDS, she and her family had been homeless for several months. Her AIDS diagnosis meant she qualified for emergency funds that got her off the streets. In the two months the team worked with her, we linked her with methadone treatment at her request. We encouraged her to enroll in a money management program, but she was not yet ready. She asked for counseling for her daughter and we referred her to counseling resources in the neighborhood. We attempted to get her to medical appointments with her primary provider at a large clinic, but that did not work. She was evicted from her apartment, which we were unable to prevent, and we assisted her in getting a room in the Ambassador Hotel, where VNH and other agencies had focused AIDS services. Sandra considered this a step backward and was worried about the hotel environment for her daughter. It was during this stay that we introduced her to an outreach MD, a woman physician, who made "rounds" at the hotel. We referred her to a housing clinic which had limited hours and was by appointment only. By this time she was interested in money management but there was a waiting list.
Sandra and her family left the hotel and were lost to follow-up for several weeks. I regained contact with her when I got a call from a social worker at a travelers' aid organization. Sandra had asked her to call me. Sandra asked for my help in making a call to get her and her boyfriend back into the methadone program, which I did. We discussed the fact that she was not homebound enough for VNH services at that time but that I would be available for her as a resource. We made an appointment for her to see the outreach physician at the clinic.
I did not hear from Sandra for many months until I got a call from the outreach physician at the clinic where Sandra now went regularly. She and her boyfriend had been on methadone maintenance for over six months and had stable housing. I saw Sandra briefly in her home to work on medication management. However, she was well linked in with the methadone clinic and remained independent.
The following year she was readmitted to our program. At this time she was endstage in her illness and was demented; she received home hospice care. She died at home with her boyfriend and daughter present.
Discussion Of Patient
When working with clients who have been shunned by the mainstream, it is imperative to establish immediately a relationship of respect. One key to this is listening to and following the client's agenda: "What is the most important thing I can do for you right now?" This may seem basic, yet many health care providers use a respectful approach with people they deem respect-worthy and a condescending or judgmental approach with those who are "outcasts". The team took its lead from Sandra. It was Sandra who identified the importance of her boyfriend also being placed on methadone maintenance in order for her to stay on the program. She had dropped out of the program several times before.
Secondly, collaboration among service providers is extremely useful in providing a safety net for clients and preventing burnout among providers. In San Francisco, service providers from mental health, inpatient units, substance abuse programs, and home care have been meeting together, using a harm reduction model, to increase the efficacy of support. Numerous agencies collaborated in Sandra's care, and the communication between them prevented the duplication of services.
Finally, from a harm reduction viewpoint, many agencies, including VNH, failed Sandra because of the limitations on their services. Methadone programs have long waiting lists, and the 21-day detoxification programs are less effective. Emergency housing services for homeless people should have drop-in times. VNH is limited by requirements for "homebound status". Money management programs have a limited enrollment and waiting lists. From a traditional viewpoint, the "failure" to obtain services is held against the client who is identified as noncompliant and perhaps not ready for help.
Housing And Food
Palliative care for people on the brink of homelessness means supporting and assisting them to find housing. Preventing hunger is another key palliative care intervention. Working towards management of symptoms with someone living on the street is possible but difficult: effective social and medical care is much easier when people have a bed and a roof over their head.
In 1990 most residential hospices did not accept people who were actively using drugs. Most facilities insisted that applicants go through a screening program which often recommended that they go through drug treatment programs before they would be considered for housing. So active drug users with AIDS who failed or refused such programs remained in drug-saturated environments in downtown San Francisco because there were no alternatives.
A residence has just opened in San Francisco dedicated to providing housing for homeless people with AIDS. One requirement is that applicants be drug-free for six months, a policy born of the residence's concern about its licensing requirements and the inexperience of its staff in dealing with the complexity of drug use. Given the reality, however, that a large proportion of homeless people struggle with addictions, it is clear that such a policy will mean that this valuable resource specifically excludes large numbers of those it is designed to serve. In another instance, San Francisco recently established a lottery system for independent housing for people with AIDS that requires applicants to have a mailing address, phone, and substantial documentation in order to get into that housing. The positive intent of this system is to centralize and coordinate housing referrals to make the system more accessible; yet for many people with AIDS who are homeless, use drugs, or who have impaired memory or psychiatric illness, this system limits their ability to access the public housing of which they have desperate need.
There are some valid concerns voiced by the providers of independent housing and hospices for people with AIDS. Their restrictions stem from worries that drug use may be disruptive, menacing, or perhaps violent. Others believe that to allow active drug users into housing might be seen as condoning drug use.
What are the positive steps being taken to provide housing for homeless, drug-using persons with AIDS? As the VNH team developed experience in the hotels, it began working with the residential hospices to accept people with active drug use. Restrictions focus not on a class of people ("drug users"), but rather on unacceptable behaviors such as possession of weapons, stealing, and violence towards others. The hospice teams gained more expertise in medication management to decrease drug craving and anxiety and to increase comfort. The Ambassador Hotel remains the most accessible site for people with AIDS who continue to use illicit drugs and who need home care services.
San Francisco has an eviction assistance program through the sheriff's department which has linked up with VNH and other AIDS service agencies to refer people to emergency housing. There is a shelters program which is serviced by the public health clinics and several voucher programs which provide emergency housing. Programs are being developed for families, particularly for women with children. These programs are reducing the numbers of homeless PWAs. Integral to ensuring clients the stability of consistent housing are money management services which ensure that a client's rent is paid. One such innovative program combines money management with assistance to negotiate the complex labyrinth of applications for government stipend programs; it is also located in the Ambassador Hotel.
Food banks, emergency food box programs, and free meal delivery services across the continent are preventing starvation and hunger. This task is complicated by a lack of cooking facilities, dietary restrictions caused by lactose and fat intolerances, and lack of refrigeration. It is further complicated when clients, in the midst of drug craving, sell groceries in exchange for drugs.
Staff have often been frustrated by clients who sell their food and then solicit money from the staff to buy more. Particularly the home care aides who generally spend longer hours with clients than other staff have been caught between spending their own money on food for clients or having to witness someone going hungry. These issues have been ameliorated by obtaining funds to provide some food for clients. The home care aides at the Ambassador Hotel now prepare hot breakfasts and lunches for their clients in the hotel kitchen. Staff working in other areas of high need take food bags and nutritional supplements with them on visits. This is in addition to the other supplemental food programs to which a client may be registered.
Funding For Palliative Care
In the United States, which has failed to provide a national health care system, funding has been crucial to our agencies' efforts to provide services to poor and marginalized clients. We have channeled funds into several important areas: home care aide support to enable people to stay at home and avoid hospitalizations; food programs and nutritional supplements; transportation (bus tokens and taxi vouchers); laundry supplies; and medications not covered by other reimbursement sources. In addition, VNH has sought grants to purchase cellular phones for staff servicing areas where patients do not have telephones and grants to establish volunteer programs to work specifically with certain populations.
Harm reduction and hospice care are two compatible approaches that together offer a set of strategies for delivering palliative care to persons who are marginalized. Hospice has always appealed to nontraditional practitioners with its radical notion of a client-centered agenda. Hopefully, the harm reduction discussion has further expanded our notion of what is possible when we remain committed to the concept of client autonomy for everyone. Sandra's story was chosen to highlight the discussion for several reasons. She taught a sometimes discouraged group of service providers not to give up on a person. The numerous agencies who supported her wishes made a difference to her. Hopefully, the telling of her story will make a difference to other persons desperately in need of hospice care who remain outside the mainstream of traditional services.
1. Robb V. The hotel project: a community approach to persons with AIDS. Nurs Clin North Am 1994; 29(3): 521-531.
2. Springer E. Effective AIDS prevention with active drug users: the harm reduction model. J Chem Dependency Treat 1991; 4(2).
(Reprinted from the Journal of Palliative Care, 11/2, 1995, pp.50-3)