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Palliative Care Program For Human Immunodeficiency Virus-Infected Patients: Rebuilding of an Academic Urban Program
Marco Ruiz and Charles Cefalu AM J HOSP PALLIAT CARE 2011 28: 16 originally published online 11 June 2010 DOI: 10.1177/1049909110371468 The online version of this article can be found at: http://ajh.sagepub.com/content/28/1/16
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In all. New Orleans. The rest of the patients (26%) complained of cancerrelated nausea and vomiting and progressive and nonresponsive weight loss. patients have developed intolerance to their remaining therapies. Many HIV-infected patients have developed strains of HIV that are resistant to all approved therapies. The impact of HIV infection is significant in the city of New Orleans. LA. More research is needed to elaborate on best palliative care practices in the care of HIV-infected patients.sagepub. investigates the reasons for the low rate or lack of prompt referrals. mental problems Introduction Palliative care is extremely important for those infected with human immunodeficiency virus (HIV). LA. MD. a cumulative total of 29 548 HIV/acquired immunodeficiency syndrome (AIDS) cases and 12 267 HIV-related deaths were reported in Louisiana.1 The palliative care approach targets patients with distressing symptoms. there will be an increasing number of patients who are not hospice candidates per se (the requirements for which necessitate a definitive prognosis of less than 6 months to live and the patient’s willingness to accept hospice care) but who have symptoms of similar or greater magnitude in an advanced disease state. in other cases.Palliative Care Program For Human Immunodeficiency Virus-Infected Patients: Rebuilding of an Academic Urban Program Marco Ruiz. USA 2 Louisiana State University-Health Sciences Center in New Orleans. 22% of patients had rapidly deteriorating functional status.edu .1177/1049909110371468 http://ajhpm. LA 70112. Recent advances in HIV treatment have prolonged the lives of patients. and disturbing or unreal thoughts and beliefs. New Orleans. Conclusions: Palliative care is extremely important in the care of patients with HIV/AIDS. and palliative care providers might be needed to better serve this population. Louisiana State University-Health Sciences Center in New Orleans. problems with controlling temper. Results: As of September 2009. mental. the aim of the palliative care programs is to fill the critical gap in clinical and support services for this growing patient population that is not served well through traditional public health organizations. respectively). Because of this. In terms of psychosocial assessment. MPH1 and Charles Cefalu. but in some cases. and despair) for which better resources are needed. outbursts of anger. depression. USA Email: mruiz@lsuhsc. Progressive multifocal leukoencephalopathy (PML) and advanced HIV nephropathy were also reasons for referral (13% and 4% of referred patients. the initial optimism has been tempered with the reality that not everyone responds to these ‘‘miraculous’’ therapies and that the process of concentrating on such complex and toxic regimens often results in an HIV care provider’s inability to address day-to-day symptoms. MD. regardless of whether the underlying HIV infection 16 is treatable or not. the majority of referred patients had problems in areas such as social functioning. Keywords palliative care. MS2 American Journal of Hospice & Palliative Medicine® 28(1) 16-21 ª The Author(s) 2011 Reprints and permission: sagepub. This article examines the experience of an urban clinic in setting up a palliative care program for patients with HIV. there were around 1800 active patients in our HIV outpatient clinic. Because many patients are ineligible for hospice by clinical status and many will refuse hospice owing to the perceived necessity for relinquishing all hope in a hospice program.com/journalsPermissions. Around 9% of patients had advanced liver cancer with metastases. HIV/AIDS. As of September 2009. looks at the importance of an interdisciplinary approach. New Orleans. A total of 5 (22%) patients had multidrug-resistant AIDS infection. Methods: Retrospective review of charts of patients enrolled in our palliative care program. USA Corresponding Author: Marco Ruiz. violence. 136 South Roman Street. psychiatric problems. 1 Section of Geriatric Medicine and Infectious Diseases. Interesting to note is that there is significant proportion of patients with mental issues (substance abuse.nav DOI: 10.com Abstract Background: Palliative care is extremely important for human immunodeficiency virus (HIV)-infected clientele. unstable moods. Integration of services among clinical. Three (13%) referred patients had AIDS dementia. mood swings.
The role of community-health outreach workers has been explored by La Fosse et al. and practical matters. The city of New Orleans ranked second for AIDS case rates among the largest metropolitan areas in the United States in 2007. They interviewed staff at the clinic to learn about the perceptions of the quality of palliative care services. The need for effective communication among severely ill patients. The authors reviewed 4384 abstracts presented to the International AIDS Society Conference in 2006. and health care providers was studied by Krug et al4 who conducted a study to compare the self-assessments of 67 late-stage patients with HIV/AIDS regarding their symptomatology and sense of self-worth to the assessments of those same factors provided the patients’ caregivers. the study ultimately shows a decrease in mortality rates for patients with AIDS. and delivery of services. The authors suggest that self-care strategies might be helpful for palliative care interventions in HIV/AIDS-infected patients. The authors found that the addition of even one symptom related to worsening health corresponded to a decrease in the patient’s quality of life. the potential problems patients and providers might face. Wantdland et al5 reviewed the usefulness of an HIVsymptom management manual containing self-care strategies for 21 symptoms in patients infected with HIV. in 2008. The authors also point out that palliative care may be the initial point of care in patients’ perceptions that hospice care equates to ‘‘giving up. These patients rated 16 symptoms as moderate to severe. 72% of newly diagnosed HIV cases and 70% of newly diagnosed AIDS cases were among African Americans. families. Nationally. caregivers. a cumulative total of 29 548 HIV/acquired immunodeficiency syndrome (AIDS) cases and 12 267 HIV-related deaths had been reported in Louisiana. This intervention helped to reduce the frequency and intensity of symptoms. the authors found the need for more dissemination of palliative care in terms of education to health care workers and providers.10 The authors discuss these workers’ role as liaisons between health care providers and the community.’’ Although the previous reports highlight the successes of HIV/AIDS-infected patients. They found 47 abstracts describing primary data on pain or symptoms that were associated with poor adherence to or intolerable antiretroviral therapy. Finally. Louisiana ranked fifth highest in AIDS case rates and eleventh in the number of AIDS cases diagnosed in 2007. the following section explores the barriers to palliative care and the experience of our outpatient clinic. The conclusion was that the function and well-being of HIV-infected patients are linked to the symptoms they experience. where the authors interviewed 6 key informants and 10 nurses. The authors found inadequate 17 .2 Kell et al3 described the perspectives of nurses in relation to palliative care services in Lesotho. The authors found significant differences in the assessments of patients’ self-worth. The authors finally conclude that more research is needed to work toward better understanding patients’ self-assessment of outcomes and having more efficient communication with patients and families/friends. The findings were noteworthy. In all. Lorenz et al11 described the importance of religiousness and spirituality among HIV-infected patients in the United States. Interestingly. The authors found that patients took about 33 pills besides the as-needed medications. the study showed an average stay of 8. organization. the main symptoms about which patients complain. communication with families/friends. Jamerson et al6 monitored the role of an inpatient palliative care unit for 51 patients with HIV/AIDS and cancer. the authors show that community health outreach workers could fill gaps in outreach campaigns to find patients suitable for palliative care services. Lorenz et al8 showed that changes of symptoms over time had an impact on the quality of life among 2267 patients infected with HIV. Robinson et al9 evaluated palliative home-nursing interventions in 25 HIV/AIDS-infected patients receiving home-health services. However. and potential solutions to those problems. Barriers to Effective HIV Palliative Care Harding et al13 studied barriers to effective palliative care delivery in patients with HIV. most likely associated with the use of antiretrovirals. 65% of participants reported that spirituality was very important in their lives. The authors studied a cohort of 2266 patients who were initially surveyed in 1996 and again in 1998. As of September 2009. Staff at this outpatient clinic highlighted the comprehensive services. South Africa. high quality. mention the need for research on endof-life issues. families/friends’ anxiety.Ruiz and Cefalu and finally discusses future research options needed in the field of palliative care in HIV-infected patients. with a majority of patients maintaining that religiousness was important when making decisions about their care (72%) and confronting problems (65%). The authors conclude that AIDS/HIV-infected patients who develop symptoms while on treatment may benefit from admission to palliative care units. HIV infection mainly affects African Americans in Louisiana. Palliative Care Services in HIV-Infected Populations The impact of HIV infection is significant in the city of New Orleans. Bennett el al12 reported the success of a palliative care program for patients with HIV in our clinic. The authors ultimately conclude that the home care of patients with HIV should be concentrated on physiologic measures and that some adaptations need to be made to assist patients in managing their care. During the first 3 months. 17 Harding et al7 in a comment on treating patients with HIV/ AIDS at the end of life.3 days for patients with AIDS and similar mortality rates between patients with AIDS and cancer. The general consensus of nurses was that palliative care was synonymous with chronic care and that pain management is a very important aspect of palliative care for HIV-infected patients.
quality of life. cultures. progressive and unresponsive weight loss. Methods The palliative care program at the HIV outpatient clinic in New Orleans was rebuilt in 2007 after being rendered inactive by Hurricane Katrina in 2005. progressive functional deterioration). These patients continued with their latest antiretroviral regimen and other medications used for other comorbidities. A total of 132 patients were studied. were ineligible for hospice of refusing hospice. If symptom management was required prior to the team meeting. advanced disease (multidrug resistant HIV/AIDS infection. The initial assessment covered pain and other physical symptoms. The authors conclude that programs in HIV palliative care are beneficial to patients while also underscoring the lack of experimental studies that might provide more accurate data. In all. They echo the view of Selwyn et al16 in calling for the integration of services that might be a significant help in providing appropriate care for terminally ill patients with HIV/AIDS. Their CD4 count and viral load ranges were 10 to 100 cells/mL and 10 100 to 500 000 copies/ mL. spiritual. This is pointed out by Harding et al14 who systematically reviewed the literature on the impact of palliative care on improved outcomes for patients with HIV/AIDS. dignity. Once a patient was identified as eligible for palliative care. In a commentary. the social worker made contact. Their cognitive function was severely impaired. Our clinic also has a separate dedicated pain clinic staffed by a pain specialist.18 clinical skills. chronic unresponsive back/chest and/or abdominal pain. and had difficult-to-manage symptoms. The majority (60%) of patients were male. autonomy. Initially. and pertinent psychosocial concerns. addressing pain and symptom management. These patients were exposed to 4 to 5 lines of regimen before referral. and referrals to pastoral support of the family’s designated clergy were made as requested. Harding et al13 posits that one of the main barriers to effective palliative care in patients with HIV is the lack of research in relation to the evolving role of such care in the era of antiretrovirals. the alleviation of medical and psychological issues. advanced AIDS dementia. a review of current medications and therapies. The palliative care program maintains a database on enrolled and discharged patients and enters the data from the measurement tool for later statistical analysis. emphasizing the need to establish integration between palliative and curative approaches in HIV-delivered services. advanced liver cancer). Their CD4 count and viral load ranges were 75 to 230 cells/mL and 35 to 350 copies/ mL for PML patients and 35 to 350 cells/mL and 1500 to 50 500 copies/mL in patients with HIV nephropathy. Other potential barriers might be the lack of experimental methods and standardized measures. lack of accurate prognostication scores. and/or malignancy and CD4 > 100. After discussion with families of patients. with the majority of consultations coming from the inpatient service. and physical needs. or uncontrolled symptoms (cancer-related persistent 18 . Around 9% of patients were referred due to advanced liver cancer with metastases. These patients subsequently died. there were approximately 1800 active patients in our HIV outpatient clinic. Creative efforts were made to accommodate the special needs of patients and families of all religions. American Journal of Hospice & Palliative Medicine® 28(1) nausea and vomiting. An assessment of spiritual concerns was completed. and low palliative care coverage in nonhospital or outpatient settings. Around 61% of patients continued with their antiretroviral therapy at the time of referral. the decision was to discontinue their antiretroviral therapy. Primary care providers referred patients who had <100 CD4 cells or AIDS-defining opportunistic infection. lack of adherence to palliative care protocols. supports. referrals were made by any member of the interdisciplinary primary care team on an inpatient or outpatient basis. 3 (13%) referred patients had AIDS dementia. Progressive multifocal leukoencephalopathy and advanced HIV nephropathy were also reasons for referral (13% and 5% of referred patients. Results As of September 2009. and failure to recognize non-AIDS-defining conditions as an important cause of mortality. and the ongoing need for palliative care services for patients with HIV/AIDS. such as lack of clinical palliative care skills. They also identified several potential barriers. Cases were presented at the next scheduled palliative care team meeting for completion of the enrollment process and team communication. The majority of patients were referred for uncontrolled pain (unresponsive and severe peripheral neuropathy. a prioritized plan of care was established. A total of 5 (23%) patients were referred due to multidrugresistant AIDS infection. severe disease-related complications. Selwyn et al15 described the experience of a teaching hospital in developing palliative care services for patients with HIV/AIDS. These patients received hospice care upon evaluation by the palliative care team. respectively). After patient and family concerns and problems were identified. were registered Medical Center of Louisiana at New Orleans HOP Clinic clients. poor or absent communication between providers and patients about end-of-care issues. failure to identify endof-life symptoms. They recommend an integrated and interdisciplinary approach to palliative care service in HIVinfected patients. advanced HIV nephropathy on hemodialysis. advanced disease. and lifestyles. advanced progressive multifocal leukoencephalopathy [PML]. Their CD4 counts and viral loads were in the range of 50 to 100 cells/mL and 1000 to 3200 copies/mL. A total of 23 patients have been referred to the palliative care program since it was re-established in January 2008. social. All assessments included familial and significantother input whenever possible. The authors found a significant improvement in pain control. and emotional. the palliative care physician was contacted for further assessment and direction in the care.
9 symptoms. Reasons for Referral to the Palliative Care Team Clinical Reasons Multidrug resistant AIDS AIDS dementia Progressive multifocal leukoencephalopathy HIV nephropathy Rapidly deteriorating functional status Cancer-related nausea and vomiting and nonresponsive weight loss Value (% OR Range) 5 3 3 1 5 5 (23) (13) (13) (5) (23) (23) Average CD4. Their CD4 and viral load ranges were 15 to 120 cells/mL and 3800 to 10 000 copies/mL. Among other issues. In our study. 82% of the patients had an addiction to drugs or alcohol and mental illness. we found that multidrug-resistant AIDS infection. The urgency of palliative care assessment ranged from 24 hours to more than 1-week. cells/mL. these include the rapid evolution of the HIV field. Approximately 90% of patients were also treated by our pain specialist at the time of referral. Discussion The palliative care program at HIV outpatient clinic in New Orleans was rebuilt due to the need for adequate palliative care services for our HIV-infected population. the development of new drugs and guidelines. Approximately 23% of patients were referred due to their rapidly deteriorating functional status. palliative care played an important role mainly because there was no means of good HIV control at that time. These patients were severely frail. inability to perform their activities of daily living. These challenges call for an integration of the services provided by HIV/AIDS and palliative care providers. wasting. cells/mL. The main diagnoses were liver disease. Their main problems were physical mobility. Some barriers to effective delivery of palliative care services were also observed during the process. Our results showed that 50% of patients present with psychological distress or substance abuse when referred to our palliative care program. Patients on average reported 10. acquired immunodeficiency syndrome. It is very interesting to note the fact that regardless of the reason for referral to our palliative care program. Approximately 80% of patients were referred to be evaluated by the palliative care team within 1 to 2 weeks of referral. and new laboratory capacity. deteriorating functional status. Some patients were never referred to the program due to multiple reasons (patients’ refusal. Conclusion Palliative care is extremely important in the care of patients with HIV/AIDS. outbursts of anger. Karus et al19 studied selfreporting of 32 symptoms in patients with HIV in 3 cities (Alabama. The integration of HIV and palliative care services has been studied previously. and malignancy. and uncontrollable weight loss) were the main reasons for referral. These patients decided to discontinue their antiretroviral therapy. 10 100-500 000 copies/mL 1000-3200 copies/mL 35-350 copies/mL 1500-50 500 copies/mL 3800-10 000 copies/mL 1500-20 000 copies/mL Abbreviations: AIDS. and uncontrollable symptoms/signs (cancer-related nausea/vomiting. violence. many of them continue to experience significant physical and psychological symptoms. such as whether to withdraw antiretrovirals and/or prophylactic therapy and when to refer the patient to hospice care. cells/mL. AIDS-related dementia. our HIVinfected patient continued to have uncontrollable pain. Table 1 shows the reasons for referral to the palliative care team. who decided to continue with their antiretroviral therapy. OR. and disturbing or unreal thoughts and beliefs. Selwyn also mentions the most difficult decisions in relation to HIV care. In the initial stages of the HIV epidemic. cells/mL. HIV/AIDS. HIV. The authors found that even though HIV-infected patients have better treatment alternatives. lack of appetite. A total of 50% of patients referred either were active drug users or had acute mental issues. Viral Load 10-100 50-100 75-230 35-350 15-120 83-200 cells/mL. Two of these patients died while in the long-term care setting. Selwyn et al18 mentions the main symptoms developed by HIV-infected patients at the end of life: pain. odds ratio. The authors conclude that effective shelterbased palliative care can be delivered and may help to reduce the costs of care for terminally ill homeless patient. cells/mL. problems with controlling temper. Arnold et al17 comment on the significant challenges faced by palliative care specialists when dealing with HIV-infected patients. poor communication between providers and patients. and psychological problems despite the use of antiretrovirals. and fever and sweats. deteriorating functional capacity. Baltimore. mood swings. lack of energy. pain. However. psychological distress. human immunodeficiency virus. it appears that palliative care has not evolved in its role in relation to HIV 19 . and worrying were the main problems reported by patients. The same experience was found by Podymow et al20 who conducted a study of shelter-based palliative care for 28 terminally ill homeless patients with a mean age of 49 years and an average length of stay of 120 days. Their CD4 and viral load ranges were 83 to 200 cells/mL and 1500 to 20 000 copies/mL. Our results concur with the results of this study. and New York City). and/or instrumental activities of daily living.Ruiz and Cefalu 19 Table 1. These barriers might have prevented the delivery of an effective intervention. extremely advanced stage of disease). unstable moods. In terms of psychosocial assessment. The rest of the patients (23%) complained of cancer-related nausea and vomiting and progressive and nonresponsive weight loss. fatigue. In a palliative care review. the majority of referred patients had problems in areas such as social functioning. chronic back/abdominal pain.
Lorenz KA. Kell ME. and despair) for which better resources are needed (palliative care hospice homes or pastoral care. 2007. Selwyn PA. Nash S.15(6):951-958. J Palliat Med. Interesting to note is that there is significant proportion of patients with mental issues (substance abuse. Palliat Support Care. mental health services. deteriorating functional status (frail patients). AIDS dementia. 9. A randomized. chest/back pain. Integration of services among mental health specialists. 13. Meier DE.6(3):461-474. Shapiro MF.39(1):23-32. J Assoc Nurses AIDS Care. Barriers to the effective referral of patients with HIV/AIDS have been identified in the literature and are worthy of investigation. Hays RD. 20 . Harding R. Louisiana Department of Health and Hospitals Office of Public Health HIV/AIDS surveillance. American Journal of Hospice & Palliative Medicine® 28(1) Funding The author(s) received no financial support for the research and/or authorship of this article. spiritual concerns. Cunningham WE. The integration of palliative care services into HIV care. and disease advancement despite treatment. Bennett M. BMC Palliat Care. Selwyn PA. et al. Access and equity in HIV/AIDS palliative care: a review of the evidence and responses. Woodcock J. more research studies are needed to better serve this population. Palliat Med. Powell FM. et al. Kappell D. Holzemer WL.8(6):1248-1268. Br Med J. Palliative care involves not only the management of pain but also the management of psychological problems. Hays RD. J Palliat Care. Goeren W. symptom management. 8. 2008. and the misidentification of the role of palliative care in HIV-infected patients. depression. Wantland DJ. Moezzi S. Caraballo RJ. Wenger NS. 2. and palliative care providers might be needed to better serve this population. Asch SM. 2006. Louisiana State University Health Sciences Center in New Orleans.2(3):305-314. 10. Late-stage HIV/AIDS patients’ and their familial caregivers’ agreement on the palliative care outcome scale.7(3):1-2. 2009. Putting evidence into practice: palliative care. Weissman DE. Walley JD. uncontrollable weight loss) were the main reasons for referral to our program.40(3):491-492. Spritzer KL. Lorenz KA. et al. and more technical resources for followup have converted HIV/AIDS infection to a more chronic disease. Jameson C. Palliative care for AIDS at a large urban teaching hospital: program description and preliminary outcomes. Easterbrook P. Evaluation: HIV clinic’s palliative care is a success. HIV Clin. Krug R. Fong G. J Pain Symptom Manage.17(3):37-46. Changes in symptoms and health-related quality of life in a nationally representative sample of adults in treatment for HIV.19(3):251-258. 2009. The discovery of potent antitetroviral therapies. 2005. In our study. 11. 2008: 1-88. and persistent uncontrollable symptoms (cancer-related nausea and vomiting. Robinson L. J Acquir Immune Defic Syndr. Cleary PD. S Afr Med J. References 1. Raveis VH. 12. The main problems involving the care of HIV-infected patients are pain. Department of Medicine Editor. Dinat N. More studies are needed to explore the importance of these barriers. Clin Infect Dis. substance-abuse specialists. 2005. Gwyther L. for her kind and excellent work in reviewing this manuscript. new means of diagnosis. These mainly involve a misunderstanding of palliative care services and/or available resources. clinicians. for instance). Dugger K. 2006. Louisiana HIV/AIDS Surveillance Quarterly Report.8(4):774-781.97(9): 849-852.17(3):8-10. 2004. and religious issues. Declaration of Conflicting Interests The author(s) declared no potential conflicts of interests with respect to the authorship and/or publication of this article. Harding R. A total of 61% of referred patients continued with their antiretroviral regimens at the time of referral. 14. Rivard M. 2005. 15. confusion between palliative care and hospice care. More research is needed to elaborate on best palliative care practices in treating HIV-infected patients. Pain and symptom control in HIV disease: under-researched and poorly managed. as well as symptom management and decision-making guidance. The lack of clear guidelines and experimental studies in palliative care interventions complicate the picture even more. Brunnhuber K. 2003. 2010. 3. 5. Qual Life Res. 16. we found some of these problems. psychiatric problems. Higginson I. Karus D. Higginson IJ. 7. Treating HIV/AIDS patients until the end of life. Community outreach to patients with AIDS at the end of life in the inner city: reflections from the trenches. Religiousness and spirituality among HIV-infected Americans. Selwyn PA. Palliative for patient with human immunodeficiency virus/acquired immunodeficiency syndrome. Kutzen H. 4. 6. Raveis V. Schwartz CE. 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Patient reports of symptoms and their treatment at three palliative care projects servicing individuals with HIV/AIDS. until I can’t. 2005. Overcoming the false dichotomy of curative vs. The challenge of human immunodeficiency virus: a model for palliative care. 21 . Coyle D. J Palliat Med. Karus D. Forstein M.8(6): 1246-1247.’’ JAMA. Liao S.290(6):806-814. Shelter-based palliative care for the homeless terminally ill. et al.30(5):408-417. Selwyn PA. Turnbull J. 18. Alexander C. 21 19.Ruiz and Cefalu 17. J Pain Symptom Manage. Arnold RM. Podymow T. 2006. Raveis VH. palliative care for late-stage HIV/AIDS: ‘‘Let me live the way I want to live.20(2):81-86. 20. 2003. 2005. Palliat Med.
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