The Hotel Project
A Community Approach to Persons with AIDS
Val Robb, RN

Men and women with AIDS and addictive diseases often fall through the cracks in our health care system. They die alone in hotels, in emergency rooms, and on the streets. More recently, attention has been directed toward prevention of HIV disease among intravenous (IV) drug users and their partners.3,8 Many community leaders and professionals in the substance abuse field tirelessly advocate for drug and alcohol treatment programs for dual- and triple-diagnosed individuals.l,3,9 A third important area of concern, however, is how to provide nursing care to persons with advanced HIV disease who remain active in their drug and alcohol addictions. New approaches must be developed for individuals with terminal illness who have "failed" traditional drug treatment programs and refuse institutional care. One of these is the "hotel project."

This article focuses on a project by Visiting Nurses and Hospice (VNH) in San Francisco to deliver nursing care to residents of an inner city single-room occupancy (SRO) hotel. Through case presentations and discussion, issues of pain control, cultural awareness, terminal care needs, and symptom management in persons with HIV and AIDS are explored. How a hospice approach to care has been successful in this setting is highlighted. The criteria for success in this project are an increase in the number of residents receiving primary medical care for HIV disease, a reduction in the number of emergency room visits, the maintenance of personal hygiene and nutrition, the prevention of homelessness, and the achievement of adequate pain control and symptom management.


VNH was invited along with other AIDS service agencies to provide care to the residents of a large tenement hotel in San Francisco's Tenderloin district. Numerous SROs house thousands of the city's urban poor, among them the elderly, recent immigrants, and drug and alcohol abusers. The hotel rooms are rodent and cockroach infested. There are no cooking facilities and only a few rooms have bathrooms. Yet despite these harsh surroundings, many hotels develop a community atmosphere with the lobby serving as the hub of activity. Many of this hotel's 150 residents are HIV positive and most actively use speed, heroin, crack, or alcohol. The VNH team who volunteered for the project began seeing clients in 1990. Since then it has provided hospice and skilled nursing care to more than 50 patients.

Between September 1991 and January 1993 the VNH team saw 47 patients (Table 1). Of the 47 patients, a total of 46 were active substance users; 15 of them had a history of psychiatric illness. Nineteen patients had an acknowledged history of incarceration, and AIDS-related dementia had a significant impact on the care of 17 of the patients.


Hospice philosophy centers on several key principles. Care is home-based and patient centered. It involves a multidisciplinary team of nurse, social worker, home care aides, volunteers, and spiritual support. Nursing care focuses on symptom management and palliation, rather than aggressive curative care.



43 male


4 female


3 transgender


26 white


13 African American


5 Latino


2 North American Indian


1 Asian

Sexual Orientation:

26 gay


16 heterosexual


4 unknown

Acknowledged history of incarceration:


Substance abuse only:


Substance abuse with psychiatric illness:


Dementia (HIV related)


n - 47 patients


According to Robert Brody, Medical Director of VNH in San Francisco,

Hospice values differ significantly from those of usual medical care in that they emphasize a shift away from cure toward comfort, and much more attention to the person and to relief of suffering than to treatment of the underlying disease. As far as possible, the patient's agenda with input from the family should be assessed and followed, rather than that of the caring professionals, agencies, or institutions. (Robert Brody, MD, personal communication, November 1993.)

When indigent people, particularly those of racial or ethnic minority groups and those engaged in illicit drug use, become infected with HIV, they have few resources to access. For many of them family ties have deteriorated or been severed. Most IV drug users feel alienated in hospitals because they are often stigmatized in that setting, being seen as a subgroup of "problem patients" within the already stigmatized population of people with AIDS.4 IV substance users with AIDS have been the focus of the "hotel project." The pilot model of community care described in this article has been shown to be a model that works and a model that can be replicated.


The difference between the hotel project with the hospice philosophy and a residential hospice should be noted here. They are quite different in that the residential hospices in San Francisco require a person to abstain from illicit drug use and the dying person is out of his or her own home. These were cited by Froner and Rowniak4 as reasons why many substance users die alone in hotel rooms or in hospitals. The hotel VNH team had to work both with the staff at the residential hospice sites and with the patients to ensure a successful placement when the patient was ready. The key was timing of the placement. If a patient's functional status enabled him or her to seek out drugs the placement often did not work. Once hotel residents became familiar with the residential hospice and realized they would receive respectful treatment, most were willing to consider placement. Placement in a residential hospice meant a markedly different lifestyle, but the dying were often ready for the change.


The nurse, social worker, and home care aide who started seeing patients at the hotel had no specialized training in how to work with this vulnerable population. They began with two patients, and within 2 months the hotel caseload grew to an average of eight patients. After the first year of providing service, VNH received Ryan White funds to supplement state and federal reimbursement from Medical and Medicare. This provided money for a small office on site, a telephone, and funding for a full-time licensed vocational nurse at the hotel.


General problems encountered throughout the hotel project related primarily to staff safety, team splitting, and an overall lack of financial resources. Staff safety is of prime concern to the team. Early in the project it was decided not to provide home care aide support to patients at night when the potential for violence was greatest. The staff support each other to leave the premises if anyone feels unsafe at any time. Although many violent incidents occur among residents, no one has been injured in any work-related incidents. Only one patient was discharged from the program for menacing behavior, and he had a history of violence and known weapons possession. Ongoing assessment of violence potential is crucial to maintain team safety. The nurse and social worker also identified that team members were at risk for increased drug and alcohol use as a direct result of working in that environment. All staff are required to attend a support group, and evaluation of staff is ongoing.

Most patients were adept at manipulation and team splitting. Team splitting occurs when staff members allow themselves to be manipulated. In such situations, everyone loses. One patient would discuss social work concerns with the nurse, and nursing concerns with the social worker. Medications, especially narcotics and food, are sources of potential manipulation. There is a continuous stream of requests for money, cigarettes, bus fare, and food from patients and the other residents of the hotel. The team deals with this by frequent and clear communication and by staff development to build a consistent philosophy and approach to dealing with these issues and to air differences among staff.

The lack of food, clothing, laundry supplies, bus fare, cooking utensils, and other resources presents an ongoing challenge. In other settings, a home care nurse and social worker can focus on nursing interventions such as pulmonary assessment or a social worker might begin with completing durable power of attorney. In the hotel setting, the first interventions usually focus on the basics of food, shelter, clothing, and a can opener. VNH receives some funding to pay for laundry supplies for patients, and volunteers have the ongoing task of finding dishes, clothes, and linens. All patients receive a weekly grocery bag and daily meal from local AIDS organizations and have access to a special AIDS emergency fund. Finite resources in a population that is so needy presents special problems for all staff, however. Creativity and alternative means of obtaining everyday supplies that patients need become second nature for nurses.

Three case studies are now presented, and significant issues from each of the cases is highlighted for discussion.

Case I Yolanda

Yolanda was a 38-year-old African-American woman with AIDS who had several grown children and used both crack cocaine and alcohol. Her medical problems included probable mycobacterium avium intracellular complex (MAC) hepatic disease, chronic anemia, folliculitis, and AIDS-related dementia.

Because of her fluctuating mental status and limited support, the hospice team's main concern was for Yolanda's safety. They also focused on her lack of consistent medical care, food, clothing, and cooking utensils.

Yolanda was followed by the medical team from a city clinic that makes weekly "rounds" at the hotel. The hospice nurse was able to draw complete blood counts and chemistry panels and begin injections of erythropoietin, a red blood cell stimulating agent, to treat a severe anemia. Yolanda refused blood transfusions because of her religious beliefs (she was a Jehovah's Witness). Because of a complex medication regimen and forgetfulness related to her dementia, Yolanda's medication compliance was poor. A pill box containing a week's worth of medicines listed by day and time, referred to as a Mediset, was used to improve medication compliance. A nurse coordinated the medication regimen with the physician. A home care aide, who was also assigned to other patients at the hotel, assisted Yolanda daily with bathing, meal preparation, and medication reminders. A social worker attempted to complete durable power of attorney, financial management, and terminal care planning.

As Yolanda's condition declined, the physician wanted further evaluation of her medical condition to rule out a malignancy, and a CT scan was ordered. This took several visits to the hospital but was finally completed with volunteer escorts.

The CT scan ruled out an abdominal mass but showed multiple organ enlargement. Throughout the course of her illness, Yolanda would alternate between isolating herself in her room and wandering the halls with an old coat wrapped around her. The hospice team, hotel management, and one of her sons became increasingly concerned for her well-being at the hotel, where she was vulnerable to theft or violence. Through a coordinated effort the social worker was able to complete an application for the residential hospice facility and when a bed became available, Yolanda agreed to leave her home in the hotel. She lived at the residential hospice for 3 months before she died in a safe environment with family at her bedside.

Discussion. The dynamics of a drug subculture, altered mental status, and the achievement of hospice placement are important issues to highlight in Yolanda's case. Understanding the drug subculture was imperative for the staff to work most effectively in Yolanda's care.

For a person with addictive disease, increased stress often leads to increased drug use. That is, "stress equals craving." Contact with medical systems can increase stress, increase drug use, and decrease cooperation with medical appointments and follow up. Therefore, the VNH team had to look at ways to reduce stressors associated with medical interventions.

Physicians made hotel visits rather than clinic appointments. Team members accompanied Yolanda to tests. Blood draws and medication injection may trigger craving for an injection drug user and a nurse can be very discreet with lab draw equipment or ask the patient to turn his or her head away. With Yolanda, the nurse would braid her hair before giving her injections, which helped her to relax. Another feature of the hotel drug culture that influenced Yolanda's care was the cycle of activity surrounding the monthly government assistance checks. When the Social Security income check arrives many patients spend the first few days of the month using their drug or drugs of choice in massive quantities or "tweaking" as most patients call it. Often this meant that Yolanda was up and out of the hotel. Planning medical appointments or tests during this time did not work.

When the money for drugs ran out, Yolanda was often ill. Some patients may have severe diarrhea from withdrawal or develop skin abscesses from IV drug abuse. Careful follow-up and interventions at home during this time can prevent unnecessary hospitalizations. This is a time where emotions are extremely labile and many patients are ready for a drug treatment program. The third week of the month can be relatively uneventful. At the end of the month, tensions increase because residents were out of money and awaiting the next check. Understanding this cycle can help nurses anticipate needs rather than react to crisis on an ad hoc basis.

Altered mental status was a significant problem for many patients. AIDS-related dementia, drug and alcohol use, psychiatric illness, and opportunistic infections such as toxoplasmosis or meningitis can all impair mental status. Excellent assessment skills are needed to assist physicians in establishing a differential diagnosis if possible. Are there focal neurologic findings? What illicit drugs may have been taken by the patient? Opportunistic infection can be ruled out through neurologic exam and if indicated, brain scan and lumbar puncture performed.

AIDS-related dementia is characterized by short-term memory loss, change in affect, decreased attention span, and impaired judgement. The effect of drug use is variable and will relate to the drugs used and the amount. Mental status changes can include somnolence, hallucinations, agitation, hyperactivity, and labile emotions.

Psychiatric illnesses present differently depending on the diagnosis and require the team to have expertise in working with schizophrenia, personality disorders, and depressive disorders.

The interventions for a patient with altered mental status are multidisciplinary. As in Yolanda's case, the social worker makes every effort to complete durable power of attorney forms for health and finance. Home care aides assist patients with bathing, meal preparation, and medication reminders. They also serve the vital function of notifying nursing staff when Yolanda's mental status changed or her safety was at risk. At times the hospice team had patients evaluated by a specialized outreach team through the mental health system. This team is capable of having a person hospitalized in a psychiatric facility if the person is considered gravely disabled or a danger to self or others. Only three patients met the strict criteria for a psychiatric hold. As exemplified by Yolanda's case, the team developed expertise in achieving placement in safer environments, such as hospice, when a patient's mental status deteriorated.

Case II Richard

Richard was a 31-year-old single white heterosexual man with a history of IV heroin and speed use. He had been incarcerated frequently since age 16 when he had run away from a father who abused him physically and sexually. He was discharged from a prison medical facility with AIDS, probable Mycobacterium avium complex (MAC) and chronic peri-rectal fistulas. When referred to the VNH nurse he had not seen a physician since his prison discharge 2 months before and had severe oral and esophageal candidiasis.

The team's first intervention was to refer him to a physician who makes visits to the hotel every week. As part of the city clinics, a physician, a social worker, and several outreach workers visit homeless shelter; and the hotel. This collaboration between the VNH team and the clinic staff ensures that patients receive fast medical attention and gives the patients the support needed to implement medication regimens and other treatments. The physician called in an order for fluconazole to treat Richard's thrush. The nurse also obtained some pads to protect Richard's clothes from the drainage from his peri-rectal fistulas.

Other nursing interventions focused on medication compliance with medications to prevent pneumocystis and oral thrush and to treat the MAC. Richard agreed to routine blood draws but when found to be anemic, he refused any interventions for several months. During an emergency hospitalization for possible drug overdose he accepted a transfusion. He was extremely ambivalent about how to treat his HIV disease, vacillating from an attitude of "just keep me comfortable" to "I'm going to do everything I can to fight this thing."

The hospice team referred Richard to a psychiatrist who made home visits. Richard also was referred to a substance abuse case management program for people with AIDS. Richard remained very labile emotionally. He recognized his lack of impulse control but was unwilling to consider psychotropic medications because of the side effects. He considered drug detoxification twice but never followed through, despite support from the VNH team and his substance abuse counselor.

Perhaps the most significant social work intervention was to sign Richard into a money management program, which stabilized his housing situation. A money management program or reliable representative payee can prevent homelessness in this population. Instead of the government check going to the patient it is sent to an independent agency or a person designated as a representative payee. The rent is then paid and the balance given to the client. Developing strategies for enrolling clients in such programs is an important social work goal. Nurses can help by emphasizing a person's deteriorating or unstable health and the importance of maintaining a stable residence.

As Richard deteriorated clinically, pain became more of an issue. He was started on fentanyl transdermal patches and ultimately stabilized at 100 g/h every 3 days. As he was becoming bedbound he began looking for friends to stay with him at night when he was alone. The hospice team was alarmed by his vulnerability and his lack of a reliable caregiver and they began working on placement options for him.

One placement failed because the staff in that unit believed Richard was menacing, and he had in fact brought a knife with him to the hospice. Weapons screening has become a routine task because so many patients have weapons.

When he was sent back to the hotel he was angry with the VNH team and began using heroin for several days during which time he was unapproachable. He then found a new person to stay with him and he stabilized for several weeks.

Ultimately, he went to a 15-bed residential hospice, without his weapons, and with the staff well prepared to deal with him. He was evaluated by the staff psychiatrist and put on perphenazine (Trilafon) 2 mg three times a day, for a diagnosis of undifferentiated schizophrenia. There was some consideration that Richard may have had multiple personality disorder as he had periods of very juvenile behavior when he referred to himself as little Ricky, and he had no memory of those times. Thirty percent of the patients at the hotel have a psychiatric diagnosis.

Many of the hotel staff, including the VNH team, continued to visit Richard at coming home hospice (CHH). During one of his last visits with the hospice nurse he spoke about his life. "I feel good about myself, I've accomplished my goals. I'm off of probation for the first time in my life and I have friends around me, real friends."

This self-evaluation reminded the team of the importance of a patient-centered approach to care and of the need for a nonjudgmental attitude with each patient.

Discussion. In Richard's case, the problems of pain control and substance abuse are highlighted as issues for clinical discussion.

Achieving adequate pain control is a primary focus for any hospice nurse. In working with patients such as Richard who have dual or triple diagnosis this objective becomes more complex. It is generally believed that addicts have higher tolerances to pain medications than persons without a history of addictive disease.6 Many physicians, however, are reluctant to prescribe narcotics to persons with known addiction disease. The nurse must be prepared to advocate for adequate pain management for clients with pain complaints and addictive disease. The Hospice physician also has advocated for adequate pain control measures when necessary.

As with any patient, an initial assessment of the patient's pain complaint is essential. Using pain scales, in which patients rate their pain on a numerical scale, are useful to guide treatment. Next, the World Health Organization (WHO) analgesia ladder, which involves choosing among three stepped levels of treatment intensity, can be used to determine appropriate pain medication.5

Avoid an episodic medication. They are not recommended for chronic pain treatment and may be difficult for a person with addictive disease to self-regulate. It is recommended that the physician prescribe narcotic, anxiolytic, or other habit-forming medications on a weekly or biweekly basis rather than monthly. It is more work to do this, but prescribing medication this way prevents the problems that arise when a patient uses up an allotted analgesic medication in 1 or 2 weeks. Then the nurse and physician can either watch a patient in acute pain or "give in" and refill the prescription.

The hospice team at the hotel avoids liquid morphine preparations, because they are too easily spilled, abused, and extremely difficult to monitor. Fentanyl transdermal patches have proven the most effective and least abused in the hotel setting. This is perhaps because the medication cannot be extracted easily from the gel base and because it is a long-acting medication that does not produce an immediate euphoria. Because the patches are changed every 2 to 3 days it may decrease some of the triggers that stimulate drug craving.

It is important to recognize that times of stress may aggravate drug cravings. When the hospice team developed rapport and trust with Richard they were able to help him separate drug craving from pain. As his physical status deteriorated his anxiety and pain increased. Once he had achieved satisfactory pain control, his "drug seeking" behavior with the staff disappeared. It is recognized that patients should not be punished for increased narcotics use during times of stress by withholding future prescriptions.

A controversial issue in substance abusers concerns the role of prescribed opiates in reducing the symptoms of heroin withdrawal. Once a patient has been diagnosed as an addict, it is not legal to prescribe opioids for the purpose of maintaining or detoxifying a patient. Treatment of pain is still permissible, however.' For instance, Richard was being medicated for peri-rectal and abdominal pain with fentanyl transdermal patches, which also reduced his withdrawal symptoms from heroin. Currently, some physicians also are willing to prescribe antidiarrheal agents, anti-inflammatory medications, and antihistamines to reduce the symptoms of withdrawal.

The problem of substance abuse in HIV and AIDS-infected persons was a critical concern, and the approach of the hospice team at the hotel was to assume that every patient was an active substance user. As a means to better plan for patient care, the team encouraged openness from their patients about drug use. Their policy was to support anyone wishing to seek counseling, drug detoxification, methadone maintenance, or any other program that would support someone to stop using drugs or alcohol.

The team members are very dear, however, that they will continue to provide hospice and nursing services to patients who continue to use illicit drugs. This is a different approach than many service providers but is consistent with hospice philosophy. There is a growing trend toward a model called harm reduction rather than an abstentionist model for working with active substance users. In this model limit setting is based on behaviors and not on the drug use itself. Patient access to current drug and alcohol programs is often restricted if patients are too disabled medically or have a psychiatric diagnosis.

It appears that patients often rely on methamphetamines and heroin to improve functional status and pain control. Recovery from drug use becomes more difficult as physical condition deteriorates, however. The nurse often speaks with patients about the risks and benefits of continued drug use and acknowledges that physicians often prescribe narcotics and at times methamphetamines for patients with end-stage disease. It has been the experience of the team that when pain is adequately treated, heroin use decreases dramatically. Several patients stopped using illicit drugs during their last few months, without any outside support, because they became so ill after using drugs.

For clients in methadone maintenance programs, the nurse needs to coordinate regularly with the patient's methadone counselor and the methadone clinic health care team. As a patient's functional status deteriorates, or AIDS dementia develops, the team may need to arrange for take-home doses of methadone, and the social worker may need to set up transportation arrangements to assist a patient to the clinic for daily dosing of medication. As a patient reaches the terminal phase of his or her illness and cannot get to the clinic, the nurse must coordinate with the methadone clinic and primary physician to provide necessary pain medications and prevent methadone withdrawal. This is best done in a residential hospice setting.

Case 3 Tony

Tony was a 32-year-old preoperative male-to-female transsexual of North American Indian and Greek background. She grew up on a reservation in the Southwest and no longer had any contact with her family. She was an IV methamphetamine user with a history of incarceration for drug dealing. At time of intake into the hospice program she had massive bilateral lower extremity edema related to disseminated Kaposi's sarcoma (KS). She did not have a primary doctor, as she had been dropped from an investigational chemotherapy study for noncompliance.

The team arranged for her to be seen at an AIDS clinic in a large medial center the next day, and a volunteer from the program accompanied her to the appointment, where she was again started on a chemotherapy protocol. For several months, she had good response to the chemotherapy. She received daily support from a home care aide to assist with bathing and meals and found several informal caregivers to stay with her at night.

In the last few weeks of her life she again developed severe lower extremity edema, which began extending upward into her groin and abdomen so that her respiratory status was compromised. She refused to go to medical appointments.

While on a wait list for a bed at CHH, she called 911 and was hospitalized at the county hospital.

During that hospitalization, it became clear that no further chemotherapy was indicated. In the hospital she was visited by the hospice team members and hotel staff-her only visitors. Tony died of a probable pulmonary embolism, the day after transfer to a residential hospice.

Discussion. The term transgender encompasses a continuum of gender identities from cross-dressers to people who have completed sex change operations. Discrimination against the transgender population exists where other forms of discrimination are not tolerated. This community is being severely impacted by the AIDS epidemic, and very little is written about their special needs.

Initially, the team checked with Tony to determine the use of appropriate pronouns. Often transgender patients have difficulty maintaining gender identity as their HIV disease progresses. They may choose to discontinue hormone therapy.

Some patients may choose to revert to a male pronoun, others continue with a female gender identity. In at least two instances, patients have had removal of silicone breast implants that were leaking and putting them at risk for cancer. It is important to advocate for the patient through all interactions with the physician, medical clinic, or inpatient setting to ensure that they receive respectful treatment of their gender identity. For instance, a request for a private hospital room if a patient needs to be hospitalized is basic to care. A complete discussion of gender identity and roles is outside the scope of this article; however, it is emphasized that the HIV/AIDS epidemic has changed as have the profiles of highest-risk populations.

Patients such as Tony will be more commonly encountered, and their issues with gender identity and diverse lifestyles must be addressed with compassion as well as a nonjudgmental attitude. Tony and others like her are members of a special-needs population, and protocols should be developed as community programs such as the Hotel Project begin to emerge in greater numbers. The term "special needs" relates to much more than the physiologic, psychologic, and cognitive issues with which health providers are most familiar, and Tony is an example of a person with AIDS who has similar issues with respect to treatment and care but whose means of having those needs met are different from the more traditional patients. The overall point is that difference must be respected whether it relates to race, ethnicity, or gender.


The Hotel Project as a model for persons with AIDS raises many ethical concerns for health care providers. Adapting to a hospice model, which is patient centered, means accepting a patient's drug use, culture, and lifestyle. Providing home care in often dirty, cockroach-infested hotel rooms; watching patients go hungry if they have sold their food for drugs; or leaving patients in potentially unsafe situations because they do not qualify for a psychiatric restraint can cause ethical distress for the provider of care, and there is little written to address solutions to these ethical dilemmas.

The VNH hospice team continues to expand its expertise in dealing with this challenging patient population. As in the above case presentations, the team was able to provide critical services to persons otherwise "lost to follow-up" by traditional medical delivery systems. This was accomplished in close association with a medical clinic and other AIDS service organizations dedicated to serving indigent persons.

The Hotel Project as a program requires a strong commitment to patients and a nonjudgmental team of health providers who collaborate across disciplines. Nurses, social workers, physicians, and home care workers work together toward providing optimal care of persons with complex social, physical, and physiologic issues. In addition, death is imminent for many of the patients in the hotel. Caring with compassion and clinical expertise for such persons mandates clear thinking, a willingness to accept difference, and a moral outrage that such populations must live so close to the margin in our society.


The author wishes to acknowledge the contribution of Daphne Stuart, LCSW, in the development of this article.


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(Reprinted from Nursing Clinics of North America, Vol. 29 no. 3, September 1994, pp.521-31)