Innovations in End-of-Life Care
Background: Despite major advances in therapy, AIDS remains an important cause of morbidity and mortality in young adult populations. As AIDS has been converted into a chronic disease, it has resulted for some patients in a more protracted course of symptomatic illness.
Comprehensive care for late-stage HIV disease now involves an increasingly complex mixture of disease-specific and palliative therapies, requiring coordination and collaboration between AIDS and palliative care services. We describe the experience of developing a palliative care consultation service for patients with AIDS at a large urban teaching hospital, funded by the Health Resources and Services Administration as one of six national demonstration projects for the integration of HIV and palliative care.
Setting: 1,100-bed medical center in the Bronx, New York. The multi-disciplinary consultation team included a physician, nurse practitioner, social worker, chaplain, outreach worker, psychiatrist, and ethicist. Patients were referred from inpatient AIDS services and outpatient care sites.
Methods: Patients underwent standardized assessment with clinical case review, Memorial Symptom Assessment Scale (MSAS), Mini-Mental Status Examination (MMSE), Karnofsky score, and Rapid Disability Rating Scale (RDRS). Interventions and follow-up outcomes were recorded and categorized. All deaths were analyzed and predictors of mortality were determined by bivariate and logistic regression analysis.
Results: Program referrals have been steady, with 132 patients followed by the consultation service from July 2000 through October 2001; 73% were referred from inpatient services (representing 12% of all AIDS inpatients admitted to the hospital during the study period); 57% of patients were male, 36% African American, 55% Hispanic; 44% had a history of injection drug use. Median baseline values included: CD4+ T-lymphocyte count = 35/mm3, HIV viral load = 53,813 copies/ ml, Karnofsky = 40, MMSE = 0 (with a median score of 24 for those able to complete the examination); number of severe symptoms reported by MSAS = 4; 71% had one or more serious impairments in activities of daily living (ADL) by RDRS. In addition to AIDS, 20% of patients had malignancies and 13% had end-stage liver disease. Presenting problems and priority issues identified at consultation included: care decisions/ goals of care (68%), pain (40%), psychosocial issues (31%), depression (23%), anxiety (19%), nausea/ vomiting (14%), insomnia (13%), and patient/ family/ team conflict (13%); these problems were fully or partially resolved in 68-91% of cases. 63 patients died (median days enrolled = 35); leading causes of death included AIDS (38%), sepsis (19%), cancer (19%), and liver failure/ cirrhosis (17%). Death was predicted only by baseline functional status (Karnofsky, MMSE, ADL impairment), and not by CD4+ count, viral load, or any AIDS-specific variables.
Conclusion: Results suggest an important and ongoing need for palliative care services for patients with advanced HIV/ AIDS, whose needs are likely to increase as AIDS evolves into more of a chronic disease. Patients were readily referred from predominantly inpatient settings, with very advanced disease; problems included a mix of medical and psychosocial issues, and were readily resolved by the consultation team in most cases. Death was predicted only by baseline functional status, not by traditional HIV disease markers. Mortality reflected both AIDS-related and non-AIDS-specific causes. Further studies are needed to identify more specific prognostic variables and to continue to improve palliative care treatment outcomes in late-stage patients with AIDS.
[Citation: Selwyn PA, Rivard M, Kappell D, Goeren B, LaFosse H, Schwartz C, Caraballo R, Luciano D, Post LF. Palliative care for AIDS at a large urban teaching hospital: Program description and preliminary outcomes. Innovations in End-of-Life Care. 2002;4(3), www.edc.org/lastacts/]
Introductionconcentrated.7 In many settings, the advances and growing specialization in HIV therapy have also resulted in a de facto separation between HIV and palliative care services, as compared to earlier in the epidemic when patients with AIDS were more commonly cared for in hospice and palliative care programs. As a consequence, the benefits of palliative care interventions may not be readily available to patients with AIDS, even while some of the chronic disease and end-of-life issues have become more protracted and complex. (See accompanying article in this issue for a discussion of the common clinical issues, which now arise in the care of patients with late-stage HIV disease.) We describe below our efforts to establish a clinical program to provide integrated HIV and palliative care services for a patient population in the Bronx, New York.
In the fall of 1999, Montefiore Medical Center, was awarded a grant by the Human Resources and Services Administration (HRSA) through the Ryan White Care Act as one of six US sites in a Special Projects of National Significance (SPNS) initiative on HIV and palliative care. Our strategy has been to develop a comprehensive program for HIV palliative care within our large urban hospital system. The program was designed to integrate palliative care and HIV services within Montefiore's extensive delivery network, focusing on the traditionally underserved populations in which AIDS is concentrated.
Montefiore Medical Center is a large urban medical center located in the Bronx, New York. The 1,100-bed teaching hospital is the major teaching hospital of the Albert Einstein College of Medicine. Montefiore has been a leader in AIDS service delivery and program development since early in the epidemic, and many of its programs have become models in AIDS care for urban communities. Consistent with the demographics of AIDS in the Bronx, Montefiore Medical Center serves an HIV-infected population primarily consisting of heterosexual African Americans and Latinos. The hospital-based AIDS Center serves a population of more than 1,300 patients in its outpatient continuity clinic, with approximately 100 inpatient admissions per month. The hospital's ambulatory care network provides outpatient HIV care through eight community-based health centers serving a total of 1,400 HIV-infected patients. Montefiore's 3,500-patient Substance Abuse Treatment Program (SATP), primarily a methadone maintenance program for chronic opioid users, provides primary care for all of its patients, 20% of whom are HIV positive. The patient population at these varied sites includes 40-55% women, 49-58% Latinos (predominantly Puerto Rican), and 23-50% African Americans. Overall, approximately 45% of our patients are believed to have acquired HIV through injection drug use, 35% via heterosexual transmission, and 10% through male same-sex contact, while 10% have no identified risk.
Our care model for our HIV palliative care program is based on an interdisciplinary team consisting of a physician, nurse practitioner, social worker, psychiatrist, bioethicist, chaplain, and outreach worker. All team members have had prior training and experience with HIV treatment, palliative care, and substance abuse treatment, which were qualifications that we actively sought in the recruiting process for new staff. Our core full-time staff consists of the nurse practitioner, social worker, outreach worker, and chaplain; the other staff have from 10-30% clinical time dedicated to the team, in addition to other clinical and programmatic responsibilities within the institution. A part-time data manager, data analyst, and research assistant help with data collection and analysis. The team has weekly team meetings to review cases and project-related administrative issues.
One of our key priorities in establishing the program was to identify the unique contributions of each clinical team member, to help to create an effective inter- (as opposed to simply multi-) disciplinary team. In addition, it was important for us to identify how these specific clinical skills needed to be applied to the clinical realities of HIV/AIDS. The process of identifying the specific HIV-related issues that most engage the team's clinical skills has progressed in parallel with the project, as team meetings and case discussions have focused on the particular themes that continue to emerge in the care of patients referred for consultation. (See Discussion section below for more detail.)
At its inception in the spring of 2000, we introduced the program to HIV treatment staff at our institution through grand rounds, educational sessions with AIDS Center clinicians, and introductory sessions with staff at the outpatient primary care and substance abuse treatment sites. We presented the program as a comprehensive palliative care service with a particular focus on what we hoped to offer regarding management of pain and other symptoms, psychosocial issues, and advance care planning relevant to patients with advanced AIDS and their families. Issues of immediate importance to HIV care providers themselves were also identified and highlighted (e.g., pain management in substance users, symptom management in late-stage patients with multi-system failure, patient/family/team conflict around end-of-life decisions), and logistics for consultation in the different sites were addressed (e.g., daily hospital rounds for inpatients, periodic on-site consultation/educational sessions at the outpatient sites).
The team receives referrals from care providers across the continuum described above, and provides clinical consultative care for patients in inpatient, outpatient, and home-care settings. Through consultation, direct care, and formal and informal education activities, the team works to increase awareness about end-of-life issues in HIV caregivers. Patients are assessed by the palliative care team, similar to other consultative services, using current best practices in palliative and HIV care. Consultations address issues including pain and symptom management, advance care planning, goals of care, psychosocial concerns for patients and families, pastoral care, and legal-ethical concerns.
The strategy of our model has been to combine clinical consultation with ongoing staff education, interacting directly with patients and families but also facilitating the primary treatment staff's ability to address relevant clinical issues. The consultation team may become involved to varying degrees in day-to-day management based on the needs of the patient and the primary treatment team (e.g., serving as "extenders" to the primary team by making home visits, vs. providing more secondary advice about pain or symptom management in hospitalized patients). HIV-specific issues are addressed in close coordination with palliative/end-of-life care issues, in order to facilitate effective interaction with HIV treatment staff. Ongoing needs have also been identified and addressed through continuing discussion with AIDS service providers, e.g., the establishment of a semi-monthly pain and symptom management clinic conducted by the HIV palliative care team within the hospital-based AIDS Center.
In addition to working closely with primary HIV care providers, the consultation team also facilitates appropriate linkages to hospice, home care, and other end-of-life services as necessary. Bereavement support is provided for families and caregivers—both volunteer and professional—after the death of the patient. Given the phenomenon of multiple losses that is so common for AIDS caregivers,8 these activities as well as periodic memorial services for families and staff have been especially important.
Data and outcomes analysis
All patients referred to and evaluated by the HIV palliative care team undergo a standardized intake assessment including history and physical examination, assessment of symptoms using the Memorial Symptom Assessment Scale (MSAS),9 and other instruments including the Folstein Mini-Mental Status Examination (MMSE),10 the Karnofsky Performance Scale,11 and the Rapid Disability Rating Scale (RDRS).12 All patients' medical records are also reviewed and abstracted for variables including history of opportunistic infections, prior CD4+ T-lymphocyte counts and HIV viral load results, past and current anti-retroviral and other HIV-specific therapy use, and other clinically relevant information. Data is collected from patient interviews and/ or by chart review upon enrollment in the service and at regular intervals until discharge or death. After the completion of follow up, we reviewed all patient charts and relevant medical record data using a standardized chart review instrument to assess disposition, outcome, and resolution or non-resolution of identified problems. Clinical outcome ascertainment was based on chart review data and input of the consultation team regarding individual case details.
Data were entered and cleaned in Access 98 and MS Excel and analyzed in SPSS, version 10, (Carey, NC). Data were analyzed using the Mann-Whitney test, the chi-square test, and the Student's t-test. For analysis, assessment of service delivery and program outcomes included descriptive analysis of sources and reasons for referral, problems identified at consultation, resolution of problems during follow up, and discharge frequency and type. Discharge outcomes have included death, transfer to an inpatient treatment facility outside of our medical center, self-discharge (against medical advice), and stabilization of disease course with decreased need for ongoing palliative care services. We analyzed each death for cause, site, timing, and circumstance. For mortality analysis, we compared the group of patients who died during follow up (including those who were discharged to a hospice or long-term care facility with the expectation of imminent death) with those who did not die. Stepwise logistic regression analysis was performed for predictors of mortality following identification of significant variables on bivariate analysis.
This demonstration project and its evaluation components were approved by the Institutional Review Board of Montefiore Medical Center as a clinical program development/quality improvement activity.
Our HIV palliative care program began formally accepting patient referrals for consultation on July 1, 2000. Through September 30, 2001, we have followed a total of 132 patients. Referrals have been steady, with an average of 9 new patients per month (range 0 to 14). Table 1 and Table 2 indicate basic demographic and clinical characteristics of patients at referral. Demographic features are similar to the larger population of patients with AIDS at our institution and in the Bronx. Clinical features highlight the advanced disease stage of most referred patients, with median CD4+ T-lymphocyte counts of 35/mm3, and 90% of patients with prior AIDS-defining conditions. Functional deficits were also common, as evidenced by low median Karnofsky and MMSE scores; 61% of patients had two or more impairments in activities of daily living. Injection drug use was the most common HIV risk behavior (44%), followed by heterosexual contact (30%).
The majority of patients (73%) were referred for consultation from the inpatient hospital setting; these patients represent 12% of all inpatients with HIV/AIDS admitted to our medical center during the study period. The leading reasons for referral, as indicated by referring clinicians, are indicated in Table 3. Of note, in addition to active HIV-related morbidity, 13% of patients had end-stage liver disease and 20% had non-AIDS-defining cancers as a primary source of current active disease. Twenty-six percent of patients were receiving HAART at enrollment, and 47% and 51% of eligible patients, respectively, were receiving prophylaxis against pneumocystis carinii pneumonia (PCP) and/or mycobacterium avium complex (MAC).
Patients had high levels of recent symptomatology, as indicated by the baseline MSAS results at intake. (Table 4) Restricting symptoms only to those experienced within the past week which had caused "quite a bit" or "very much" distress (the two highest categories on the MSAS distress scale), patients reported a median of four symptoms (range 0 to 25). (Using less restrictive criteria, to include any mention of a symptom in the proceeding week, patients reported a median of eight symptoms). The ten leading symptoms included a mixture of medical and psychological categories, including pain (48%), lack of energy (41%), lack of appetite (26%), feeling sad (25%), worrying (25%), difficulty sleeping (21%), change in body image (21%), shortness of breath (19%), fever (19%), and diarrhea (18%). Based on case review of all symptoms and conditions, patients' medical symptoms (e.g., pain, vomiting, shortness of breath, diarrhea, fever) were assessed as being referable to HIV-specific opportunistic infections in approximately 40% of cases, and referable to other co-morbidities or non-specific etiologies in the remaining 60% of cases.
After initial assessment, the consultation team identified the major specific problems and pertinent priority issues needing to be addressed for each patient. The most commonly identified problems and issues included: care planning decisions (68%), pain (40%), psychosocial issues (31%), depression (23%), anxiety (19%), nausea/vomiting (14%), insomnia (13%), and patient/family/team conflict (13%). Interventions were proposed to address these issues as part of the inter-disciplinary treatment plan, which was then discussed with the primary treatment team. Chart review of cases after completion of follow up indicated that identified problems were fully or partially resolved in a mean of 76% of cases. Most successful resolution was seen for psychosocial issues (91%), pain (90%), and nausea/vomiting (90%); less successful resolution was seen for memory problems/dementia (26%), fatigue/weakness (66%), and depression (68%). (Table 5)
We examined patients' histories and decisions concerning HIV-specific medical therapies as they approached the end of life. As noted above, 26% of patients were on HAART at enrollment. Of those not taking HAART, reasons for this (may include multiple reasons per patient) included: problems with adherence (47%), intolerance (32%), decisions to pursue only palliative care (33%), and treatment failure (5%). Of those on HAART at enrollment, 6% discontinued this therapy as part of their palliative care treatment plans, and 13% of those not on HAART started this therapy as part of recommended palliative care interventions. As indicated above, current use at enrollment of prophylactic regimens was more prevalent, close to 50% for both PCP and MAC prophylaxis.
Follow-up data analysis of discharge outcomes concerns the 115 patients whose cases have been completed. Of these, 55% have died, 17% have been discharged to hospice or nursing home for terminal care, 12% have been discharged to nursing home/other facility for chronic care, 20% have self-discharged themselves (against medical advice) from palliative care follow up, and 7% have been medically discharged from care due to resolution of all palliative care-related issues requiring ongoing follow up. (For the latter, all patients/families were invited to re-contact the service as needed in the future.) Length of follow up for these different discharge groups ranged from a median of 35 days for those who died to 199 days for those who were medically discharged. (Table 6)
Analysis of cause-specific mortality indicated that 24 patients died of end-stage AIDS, 12 of bacterial pneumonia or sepsis, 12 of cancer (non-AIDS-defining), 11 of liver failure/cirrhosis, and one each from end-stage renal disease, amyotrophic lateral sclerosis, congestive heart failure, and chronic obstructive pulmonary disease. Comparison of patients who died with those who did not die during follow up (in which patients who died were combined with those discharged to hospice or nursing home for end-of-life care) indicated that death was not predicted by CD4+ count, HIV viral load, prior AIDS diagnosis, or a "poor prognosis" AIDS- related condition (using the guidelines).13 A prior life-threatening co-morbid condition (malignancy, end-stage liver disease, end-stage renal disease) was weakly associated with mortality (p=0.08). Death was more significantly predicted by functional status at baseline, including low Karnofsky score, low MMSE score, or decreased activities of daily living. (Table 7) On logistic regression analysis, only functional status (eg., low Karnofsky score or impaired activities of daily living) remained significant. In a model that included variables which approached significance (p < 0.15) on bivariate analysis, the only significant predictor on regression analysis was Karnofsky score (adjusted odds ratio 0.7 for each 10 point increase, 95%. C.I. 0.6 - 0.9, p=.005).
Despite major advances in therapy, AIDS remains an important cause of morbidity and mortality in young adult populations. The experience of our demonstration project indicates an important unmet need for palliative care services for patients with HIV/AIDS in our urban medical center. Overall integration with existing HIV services has been successful, referrals of patients have been steady and forthcoming, and education of staff, patients, and families has continued. Clinical problems identified by the consultation team have included a mixture of medical and psychosocial issues, and most have been able to be resolved by multi-disciplinary interventions and collaboration with the primary treatment team. HIV treatment and palliative care interventions have been approached in an integrated way, with significant numbers of patients continuing on HAART and on opportunistic prophylaxis even in the final stages of their illness. This experience underscores the importance of a both-and rather than an either-or approach to palliative and disease-specific care in patients with late-stage HIV disease. Our experience has also helped us to identify key issues and potential problems that would need to be addressed for successful replication of our program, as we will discuss in more detail below.
One noteworthy finding in our patient population is that so many patients were in advanced stages of illness, with significant functional impairments, severe immunosuppression, and multiple past opportunistic infections or other morbidities. This highlights the protracted, chronic disease nature of HIV disease in the current era, in which patients with a high burden of disease and disability may be living for more prolonged periods of time than in the pre-HAART era. This reinforces the inference that some patients in the late stages of AIDS may need even more involved, long-term palliative care interventions than was the case when mortality was much more rapid.
The prevalence and types of symptoms reported by our patient population are similar to those reported in late-stage populations studied before the HAART era.14-18 In the majority of cases, pain and other symptoms appeared to be referable to specific opportunistic infections and/or other co-morbidities. We did not assess specifically whether symptoms were referable to the effects of HAART and other HIV-related medications. Additional studies are needed to address this question more systematically, as well as to further examine associations between certain symptoms and specific HIV-related disease entities. Of interest is the observation that the prevalence of pain and certain other symptoms in our study—as indicated both by self-report and assessment of the palliative care team—was significantly higher than what was initially identified by referring clinicians, as evidenced by the stated reasons for palliative care referrals. This suggests, as reported elsewhere,19-21 that even AIDS-experienced clinicians may underdetect and undertreat pain and other symptoms in patients with HIV. This may reflect the disease-driven "diagnosis-and-treatment" approach that now tends to characterize HIV care, in contrast to the more patient-centered and quality-of-life-focused approaches that characterize palliative care practice.
One striking finding in our patient population was the significant contribution of mortality from non-AIDS-defining illnesses, including liver failure/cirrhosis and malignancies such as lung and gastrointestinal cancers. This may reflect the fact that, as has been observed elsewhere, patients with AIDS are now living long enough to experience growing morbidity and mortality from co-morbid conditions that are not intrinsically HIV-related.22-27 Ironically, as AIDS becomes more of a manageable chronic disease, it may evolve that some of the common co-morbidities that occur in patients with AIDS could pose more immediate risk of short-term mortality than HIV infection itself. Moreover, in many instances—such as with liver cirrhosis from hepatitis B and/or C, or alcohol use, or cancers related to the cumulative effects of tobacco and alcohol exposure—these co-morbidities may also be related to some of the same underlying behaviors that are associated with HIV acquisition. This phenomenon, together with the common observed co-occurence of active substance use and psychiatric illness in HIV-infected patients, highlight the challenges involved in addressing palliative and end-of-life care issues in this population.
Concerning the analysis of mortality risk, it is noteworthy that predictors of death did not include traditionally identified HIV prognostic markers in this very late-stage population. Indeed, the only variables that did predict risk of dying were markers of impaired functional status, such as Karnofsky score, MMSE, and deficits in activities-of-daily-living. This likely reflects the fact that in patients with very advanced disease, the previously identified prognostic markers—generally derived from studies of patients in earlier stages of HIV disease—are not as useful in predicting mortality, with or without the presence of HAART. The previously promulgated NHO criteria for AIDS,28 which were intended to identify patients at high risk of dying, did not discriminate well in our population between those who did and did not die during short-term follow up. Interestingly, the presence of some other co-morbidities (e.g., cancer, liver failure) was closer to being significant as a predictor or mortality risk on univariate analysis, but this was not significant on regression analysis. This suggests the crucial need for additional prospective studies to address prognostic factors in late-stage patients in the current phase of the AIDS epidemic.
Another clinical observation worth noting in our clinical data was the overlap between disease-specific and palliative care interventions in our patient population. As also evidenced by the different clinical trajectories of certain patient subgroups, ranging from early death in some patients to clinical improvement and discharge from the palliative care service in others, there is now substantial heterogeneity in the clinical course of late-stage HIV disease. More than half of the patients were on HAART and/or opportunistic infection prophylaxis regimens at enrollment in our program, and approximately 10% either stopped or started HAART after enrollment. For some patients, decisions about disease-specific therapy were based on an assessment of goals of care and expected outcomes of treatment—an approach consistently encouraged by the palliative care consultation team—while for others, continuation of such treatments represented more of a kind of clinical inertia within a disease-driven philosophy of care. (Indeed, it is of interest that with all the extensive HIV consensus guidelines that address thresholds for initiation of HAART and prophylactic regimens,29,30 there are no published guidelines concerning thresholds for discontinuation of such therapies in the late stages of illness.) This suggests the importance of developing appropriate clinical tools for HIV disease-specific therapy at the end of life just as these guidelines have been developed for earlier stages of illness.
Our program has been successful in bringing together the often disparate worlds of HIV care and palliative care to the extent that we have been able to establish credibility in both clinical areas. One key feature in successful implementation and uptake of our program was the fact that program staff had extensive HIV treatment as well as palliative care experience. All clinical staff were also familiar with and experienced in working with substance-using patients, and thus able to be of practical benefit to HIV care providers addressing the difficult issues surrounding pain management and co-existing addictive disorders. The fact that the palliative care team was able to be deployed in the community also helped to promote productive collaboration with HIV treatment staff, since this facilitated home care, follow up, and medical engagement of hard-to-reach patients and families. Lastly, the multi-cultural and multi-lingual background of the palliative care team helped to promote trust and communication with patients and families, especially in our large Hispanic population. On an operational level, team cohesion and integration was accomplished through regular team meetings and a series of team building exercises and mini-retreats, facilitated by a psychologist with extensive experience working in end-of-life care; attention to these interpersonal and process issues were key factors in promoting teamwork and effectiveness.
On an institutional level, the fact that this demonstration program coincided with a broader initiative at our medical center to develop a hospital-based palliative care service—and that the HIV project director was also the director of this larger program—helped to establish and promote integration of the program with other clinical services. At the same time, the fact that the HIV program had a specific team comprised of the unique qualities mentioned in the paragraph above, enabled the HIV project to collaborate effectively with the hospital's HIV service providers and succeed in ways that would have been unlikely had it been entirely subsumed within the more broad-based palliative care initiative. In addition, the fact that the HIV project director enlisted the involvement and buy in of senior institutional leaders involved in AIDS care and substance abuse treatment, starting with the early planning stages of the program, was very helpful in establishing the standing and credibility of the program and its connection with these other services.
Barriers to successful implementation of the program have had mostly to do with the challenges inherent in changing provider attitudes and institutional culture. Despite the changes and developments noted above, reluctance to address end-of-life issues is still common among physicians and physicians-in-training, and attention to pain and symptom management separate from treatment dictated by disease-specific therapy is still an unfamiliar approach to clinical decision making. In this context, the HIV palliative care team has had to work continually with clinicians to encourage timely referrals before life-threatening crises occur, and has also had to work with each successive rotation of hospital house staff to orient new trainees to the service and its potential benefits. The positive impact of these efforts is that "teachable moments" do occur: when successful palliative care interventions are carried out, clinicians and students do become aware that there is another paradigm of care that can result in gratifying results for patients, families, and care providers. Nevertheless, this is a slow and labor-intensive process, and cultural change requires ongoing and active efforts.
Several clinical issues are worth noting in more detail concerning barriers to program implementation:
1.) Given the uncertainty of short-term prognosis for many patients with advanced disease, and the fact that HIV clinicians may overestimate patients' likelihood for survival, it was important for the implementation of our program to establish an active presence on the hospital's inpatient AIDS service, to encourage and identify initial referrals. We accomplished this by having the program nurse practitioner meet on a weekly to semi-weekly basis with the inpatient service's clinical staff, to review all admissions and identify potentially appropriate patients for consultation. Without this proactive approach, and by relying only on a more passive mechanism to receiving referrals, we would likely have experienced fewer overall referrals, and proportionately more last-minute referrals of patients on the verge of dying.
2.) The co-existing problems of HIV infection, substance abuse, and psychiatric illness are critically important in our patient population and in other urban centers. In order to avoid the inherent problems in staff "splitting," and so as not to undermine the primary care provider-patient relationship, from the program's inception we established the standard that the palliative care consultation team would not act as the prescriber of analgesics and other controlled substances, but would rather function in an advisory capacity to the primary treatment team. Recommendations were made and discussed with the primary team, but all prescription of medications was carried out by the primary providers. This both reinforced the process of integrating HIV and palliative care treatment interventions, and helped to avoid the polarization of HIV and palliative care treatment teams over patients' receipt of controlled substances. This arrangement worked remarkably well, and there were few instances in which palliative care treatment recommendations for pain management were not adopted and implemented by primary HIV treatment clinicians.
3.) Due to the nature of AIDS as a stigmatizing, life-threatening illness affecting young adults, and the perception among certain racial/ethnic minority populations that palliative care may represent "second-class" or less-than-optimal care31,32 (i.e., a prejudicial withdrawal of care rather than a positive treatment choice), it has been extremely important to address the issues of trust, empowerment, and respect for patients' and families' values as a central aspect of palliative care for our patients. These issues can be even further magnified in the setting of AIDS, in which secrecy about diagnoses and concerns about disclosure can impact on families' understanding of the illness, and result in misunderstanding about the appropriateness of different life-prolonging interventions in some situations. Discussions about decisions to withdraw life-sustaining interventions, or even to establish treatment-limiting advance directives, have had to be approached with detailed attention to any potential treatment options, likely prognosis, quality-of-life issues, and have had to solicit detailed information about patients' and families' wishes, as well as patients' concerns about disclosure. This type of process should of course inform all discussions of advance directives or treatment withdrawal, regardless of patients' diagnoses, but due to the broader context that frames these issues in our patient population, it is important to be as open and anticipatory when addressing them in order to enhance interactions with patients and families about difficult end-of-life questions in the setting of AIDS.
The cumulative experience of this project has allowed us to characterize further the specific clinical issues that now commonly arise in the palliative care of patients with HIV, and the role of the different disciplines on the team in addressing them. Some of these issues pertain to the nature of the populations currently affected by HIV, i.e., young patients and families, with an over-representation of certain racial/ethnic minorities, often from poor urban communities with a high prevalence of substance use and related problems. Other issues pertain to the nature of HIV disease and its current treatment, such as the challenges concerning care planning and goals of care, uncertainties over prognosis and what constitutes the end of life, clarification of disease-specific and palliative care interventions, and the myriad symptoms and complications that may occur due to HIV-related disease or other medical and psychiatric co-morbidities. These multi-layered themes underscore the importance of the interdisciplinary team in addressing the clinical needs of patients and families in the setting of AIDS (Table 8), which can help to articulate a conscious strategy to address the combined needs for HIV-specific care and palliative care for patients with advanced disease.
On a clinical level, the types of problems that were most successfully resolved by the HIV palliative care team included pain, certain other symptoms, care planning decisions, psychosocial issues, and patient/family/team conflicts. Depression, cognitive/memory deficits, and fatigue were not as readily resolved, some of which may reflect underlying HIV disease progression and the unavoidable clinical decline associated with advancing disease, or other intractable social and environmental issues. The lack of an extensive evidence-based literature in AIDS on certain commonly used palliative care interventions for treating symptoms such as psychostimulants or corticosteroids may also become a barrier for rapid uptake of these interventions, especially in teaching hospital settings. In the experience of our consultation service, for example, primary physicians' reluctance to use these medications for fatigue was more common than their reluctance to prescribe recommended analgesic regimens. Further clinical studies are needed to establish more systematic best practices for the palliative care of late-stage patients with HIV disease, including both medical and mental health issues. One would hope that with the intense interest in clinical trials for new anti-retroviral therapies in AIDS, there may also be opportunities and support for additional clinical studies to better define and advance the care of patients with progressive disease, even—and especially—in the age of HAART.
Overall, the success of our program has exceeded our expectations, and we believe that this was due primarily to: (1) adequate groundwork and planning, (2) liaison with key institutional partners, (3) recruitment of excellent staff with the specific skills needed to work effectively with our patient population, and (4) delivery of clinical services that were quickly recognized by HIV treatment providers as being personally helpful and that added value to the care of their patients. By overcoming the false dichotomy of HIV versus palliative care, we were able to develop a multi-disciplinary program that crossed boundaries and fostered on the integration of these different approaches. Our model is only one example of how to approach these issues, and represents an attempt to integrate the two paradigms of care within a largely inpatient-based, teaching hospital service. Other models exist (including those of other grantees funded in the same cycle of HRSA Ryan White Care Act demonstration projects as ours), and additional strategies may also need to be developed based on the clinical and institutional realities of different specific settings. Our experience suggests that comparable success will be likely in integrating HIV and palliative care services, if one is able to address these concrete local issues, create a model that acknowledges them, and develop an institution-specific program designed to meet the needs of patients and their care providers.
The authors would like to acknowledge the contribution of Mrs. Evelyn Rivera-Lipnicky for her expert help with manuscript preparation. This work is supported in part by a grant from the Health Resources and Services Administration (HIV SPNS #5 H97 HA 00150-02).
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