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Access to palliative care in the USA: why emphasize vulnerable populations?

Joseph O'Neill MD MPH     Katherine Marconi PhD MS  

HIV/AIDS Bureau, Health Resources and Services Administration, US Department of Health and Human Services, 5600 Fishers Lane, Room 7-13, Rockville, MD 20857, USA

	INTRODUCTION

TOP INTRODUCTION HOW CAN WE REACH... WHY A COMMUNITY APPROACH... A FRAMEWORK FOR THE... REFERENCES

 
How we recognize and address the palliative care needs of marginalized, vulnerable, or socially excluded populations may very well be the measure of our success in integrating palliative care into current health systems. LuAnn Aday, who has written about access for under-served populations in the USA, defines vulnerable populations as being ‘at risk of poor physical, psychological, and/or social health’¹. If we deconstruct her definition, being ‘at risk’ signifies a high probability of illness and inappropriate or no healthcare, and the possible causes include lack of access to preventive services, disease screening and treatment as well as lack of access to the housing, employment and other supportive structures that many of us take for granted. Aday then identifies some of the at-risk populations in the USA—the chronically ill and disabled, persons with AIDS, the mentally ill, alcohol and substance abusers, homeless people, immigrants and refugees and combinations of these¹. We would add another category that crosses this list—membership of a minority or ethnic community. Because of our history of discrimination and unequal investment in health, social, and economic resources in these communities, they are disproportionately at risk.

We already have some indication of differences among vulnerable populations in their knowledge of end-of-life care. For example, Silveira and DiPiero² identified non-white race and low educational level as factors associated with lack of such knowledge and Shapiro et al.³, in the HIV Cost and Services Utilization Study (HCSUS), found differences in use of medical care and pharmaceuticals by race, gender, and insurance status. Another study followed Medicare patients admitted to hospital in three American States (Illinois, New York, and Pennsylvania) with principal diagnoses of congestive heart failure and pneumonia⁴; on a series of measures, black patients were found to receive lower-quality care than non-black patients, and these differences persisted when groups with equivalent poverty levels were compared.

In the USA, lack of insurance may complicate access. But data from other countries indicate that universal health coverage does not always result in universal access. For example, a Canadian study found that access to cardiac services decreased, and mortality rates after acute myocardial infarction increased, by income grouping: the lower the income quintile, the more adverse the health consequences⁵. We know which populations are at high risks of illness and we have studied the barriers to their obtaining good-quality healthcare. In our palliative care planning we need to discuss how to lessen the chances of excluding them as we integrate palliative care with primary and specialty healthcare and end-of-life care such as hospice.

	HOW CAN WE REACH VULNERABLE POPULATIONS?

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The Department of Health and Human Services' Health Resources and Services Administration (HRSA) is responsible for funding private and public healthcare organizations to deliver services to vulnerable and socially excluded populations, especially the uninsured. HRSA's goal is to achieve 100% access to health services and 0% disparity in healthcare; much of its annual budget of about $5 billion is used to design and deliver healthcare services to vulnerable populations and to train the health professionals who serve these populations. Since about 42 million individuals in the USA are uninsured and 39 million do not have a usual source of healthcare^6,7, this is a massive undertaking. The cornerstone of HRSA's efforts is the funding of community health centres and other community-based organizations. These agencies are non-governmental, and for the most part they are non-profit agencies located in low-income and minority and ethnic communities.

Despite these efforts, our information on HIV care and treatment shows that we still have a long road to travel to equalize access to good-quality care among under-served populations. HCSUS showed that, although access to care improved between 1996 and 1998, African Americans, Hispanics, women, the uninsured and people with Medicaid had significantly less access to healthcare than the majority white populations. Barriers to care among HRSA's grantee clients include lack of knowledge about services, long waiting times for services, negative service-provider attitudes, ineligiblity for services, transport difficulties, language incompatibilities and fear that treatment might be denied [www.TheMeasurementGroup.com/knowBase/Coopagree/clientBarriers/1/Knowledgeltem.htm].

The activities of HRSA's grantees have generated ideas for us to consider as we discuss how to improve access to palliative care. For example, the Division of Nursing in HRSA is funding New York University for the systematic development of the first Advanced Practice Palliative Care Nursing Program in the United States—including a distance learning component that will make it accessible to health professionals in poor rural areas. The following are some other concepts from our grants that can be applied to palliative care:

• Patients, their families and individuals from the communities that these agencies serve are involved in organization boards and in the planning councils that advise our States and localities on how to distribute care and treatment dollars
  
• Primary healthcare is defined to include mental health and substance-abuse treatment. While these services may not be delivered by a community health centre, strong linkages must be established to ensure that patients receive prompt referrals and treatment. For example, the University of Maryland Medical System's HIV clinic is providing palliative care that is integrated with primary healthcare and linked to substance-abuse treatment. This service configuration meets the needs of the many patients who are active drug users
  
• HRSA's Bureau of Maternal and Child Health has a special fund that can be spent on chronic disease management, including pain and symptom control, in children
  
• Care plans most often include plans for housing, day care and other support services. Catholic Community Services in New Jersey has established a community residence for terminally ill homeless individuals with HIV. The patients can then receive the primary healthcare and hospice care that they require. The housing project's staff offer the supportive care that families traditionally provide at the end-of-life
  
• The long progression of many chronic diseases such as AIDS is recognized. Individuals with HIV whose living situations are stabilized and who for the first time gain access to continuing medical care and pharmaceuticals may see their health improve. Pain relief and other palliative care services may then need to be integrated for several years with curative treatments
  
• HRSA-funded services must evaluate barriers to patient care and try to lower or remove them. Thus, they must address waiting times and transportation to clinic appointments, fear of being questioned about immigration status, differences in language and cultural definitions of health and illness, and stigma associated with disease
  
• Linkages with healthcare facilities in institutions that individuals may move into and out of are stressed. For example, the Volunteers of America are working with the New Orleans and Los Angeles jail systems to institute end-of-life screening and care for incarcerated individuals. Inmates move from correctional healthcare to community healthcare and, in some instances, to prison healthcare.
  

The HRSA-funded health centres and organizations, along with programmes such as those supported by the Robert Wood Johnson Foundation and the Open Society Institute, point the way to including, rather than excluding, vulnerable populations.

	WHY A COMMUNITY APPROACH IS IMPORTANT

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Community-based healthcare is central to our ‘inclusive’ approach. As part of the Federal Government we do not presume to know how best to deliver services in our diverse communities—especially communities with little history of accessing healthcare and other support services. The perspectives of patients and families, along with those of health professionals, drive the way services are organized and delivered. (A visit to a HRSA-funded community provider in rural Alabama is a different experience from a visit to such a provider in New York City; the service configurations of each are determined by the communities where they are located, not just by their financing and reimbursement arrangements.)

The way we have reacted to the AIDS epidemic underscores the importance of community care. As the epidemic unfolded in the United States, individuals had difficulty gaining access to traditional medical systems. These care systems were ill equipped, and sometimes afraid and unwilling, to meet the needs of people dying from AIDS. Many AIDS patients were shunned and had no way to meet even their needs for food, shelter and simple human interaction. In response, community-based agencies created networks of services, some from existing providers, others from new ones. The AIDS service networks offered help with communication when difficulties arose from language or conflicting concepts of health and illness, organized caregiver support and home healthcare, and added meal deliveries, transportation and other services to traditional medical services. The concept of communities of care has been proposed as the cornerstone for rebuilding of healthcare in America⁸, and can serve as a model as we approach palliative care.

	A FRAMEWORK FOR THE FUTURE

TOP INTRODUCTION HOW CAN WE REACH... WHY A COMMUNITY APPROACH... A FRAMEWORK FOR THE... REFERENCES

 
So, how can we go about creating communities of care for palliation? Here are some issues that must be addressed:

• The knowledge, attitudes, training and experience of health professionals and staff to interact appropriately with vulnerable populations with advanced disease
  
• The importance of collaboration between medical and supportive services in achieving high-quality palliative care
  
• The appropriateness of the organizational characteristics of our palliative care services. Characteristics of importance include participation of clients from under-served and socially excluded communities in shaping clinical services, appropriate eligibility requirements for care, availability of on-site or easily accessible ancillary services, and adoption and support of clinicalcare guidelines
  
• The responsiveness of palliative care service delivery systems to the needs of under-served communities, including the types of services offered in a community, the extent to which health and support service organizations maintain regular contact with each other, and the adoption of system-wide standards of care
  
• The flexibility of the health policy environment to support palliative care services for all populations. In the USA, both Federal and State reimbursement policies are critical factors. Current issues that limit access include inter-State variations in Medicaid and Medicare and immigration and welfare reforms.
  

Only by addressing all of these issues will we build a system that supports the delivery of palliative care in vulnerable communities. Let us give an example. One of the first patients seen by the University of Maryland Medical System project was a 44-year-old HIV-positive man who arrived at the hospital with a CD4 count of zero. There was no history of primary healthcare. In hospital he was stabilized and put on anti-retroviral therapy, then he was released. However, while in the hospital he missed a judicial court hearing for petty theft. After discharge, he was arrested on a bench warrant and put in jail, where he was unable to obtain his medications. He became seriously ill and had to return to the medical centre. As a patient in the university's HIV centre and palliative care programme, he has now been able to receive various necessary services, including housing, and his condition is stable. This case illustrates what we can achieve when vulnerable populations have access to integrated palliative and curative care.

	REFERENCES

TOP INTRODUCTION HOW CAN WE REACH... WHY A COMMUNITY APPROACH... A FRAMEWORK FOR THE... REFERENCES

 

1. Aday LA. At Risk in America. San Francisco: Jossey-Bass, 1993

2. Silveira M, DiPiero A, Gerrity M, Feudtner C. Patients' knowledge of options at the end of life. JAMA2000; 284:2483 -8[Abstract/Free Full Text]

3. Shapiro M, Morton S, McCaffrey D, et al. Variations in the care of HIV-infected adults in the United States. JAMA1999; 281:2305 -15[Abstract/Free Full Text]

4. Ayanian J, Weissman JS, Chasen-Taber S, Epstein AM. Quality of care by race and gender for congestive heart failure and pneumonia. Med Care 1999;37:1260 -9[Medline]

5. Alter DA, Naylor CD, Austin P, Tu JV. Effects of socioeconomic status on access to invasive cardiac procedures and on mortality after acute myocardial infarction. N Engl J Med1999; 341:1359 -67[Abstract/Free Full Text]

6. Moy E, Bartman B, Clancy C, et al. Changes in usual source of medical care. J Health Care Poor Underserved1998; 9:126 -38[Medline]

7. Kaiser Commission on Medicaid and the Uninsured. Uninsured in America: a Chart Book. Menlo Park, California: Henry J Kaiser Family Foundation, 2000 [http://www.kff.org/content/archive/1407]

8. Shortell S, Gillies R, Anderson D, et al. Remaking Health Care in America. San Francisco: Jossey-Bass,1996

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