Introduction

According to the World Health Organization (WHO), access to palliative care is insufficient; globally only 14% of individuals who need care receive it [1]. Presently, there is scant data regarding variations in geographic access to hospice and place of death in the U.S. and globally. In 2012, a study was conducted to explore access to adult inpatient hospice facilities among adults with cancer. The investigators reported that while urban areas of England were well-resourced, large parts of the country had below average accessibility to hospice and above average demand [2]. Chukwusa et al. conducted a national population-based observational study in England to explore the urban/rural differences in the relationship between geographic access to inpatient EOL facilities and demonstrated an association between geographic access to inpatient hospice facilities with where people die [3]. This association was stronger for individuals in rural areas where a greater drive time from hospice revealed a higher chance of a home death [3]. In a subsequent study, Chukwusa et al. examined regional variations in place of death in North East and South East England, and reported that the further individuals lived from a hospice location, the less likely they were to die in a hospice facility [4]. A recent investigation on the impact of population aging and EOL care in Scotland revealed that by 2040, two-thirds of all deaths could occur in community settings (home or inpatient hospice) [5], demanding an increase in the availability and skills of community-based EOL care facilities and healthcare professionals, respectively. Recent literature that exploring these trends in the U.S. are sparse.

Southern United States (US) has the highest incidence and mortality of Human Immunodeficiency Virus (HIV) infections and stage 3 Acquired Immunodeficiency Syndrome (AIDS) of all causes [6]. With chronic illnesses, such as HIV/AIDS, access to healthcare services is an important part of care from diagnosis, through end-of-life (EOL). Although data from across the US suggests that there is increasing geographic accessibility to hospice in recent years, there is sparse data in the Southeastern Appalachian region regarding access to care for PLWHA. Similarly, little is known about the availability of hospice resources and advance care planning in Appalachian areas. Providing EOL services in rural areas is a challenge due to geography (e.g., long travel times/distances, seasonally poor driving conditions), logistics (e.g., equipment, power, telephone/internet access) and the inability of rural hospices to attract and retain staff. Moreover, stigmatization, isolation and alienation by healthcare, community, and family members related to HIV diagnosis exists [7–10]. Although research shows that accessibility to EOL services and resources may not match rural patients’ needs, these studies only examined hospice services [11]. There is a paucity of studies that have explored other EOL services (e.g., palliative care, transportation, counseling, spirituality) that are essential components of quality EOL care among rural and underserved patients. Moreover, studies investigating patient populations with critical needs for these services such as those with HIV/AIDS in underserved areas such as the Appalachian regions are also lacking.

Increasingly, many large, rural geographic areas of the US lack access to EOL services. However, studies reveal inconsistencies in the number of estimated individuals without access [11, 12]. Virnig et al. showed that most rural areas lacked access to home-based hospice care, and an individual’s location was largely associated with hospice access [11]. For instance, 0% of the population within an urban community, 9% of the population in a rural community neighboring an urban community, and 24% of the population in a rural community not adjacent to an urban community lacked access to hospice facilities [11]. In a later study of eight states, 62% to 92% of rural counties had no hospice providers [12]. Looking only at Medicare certified hospice facilities, recent data suggest that 88% of the population lives within thirty minutes of hospice, and 98% of the population lives within an hour of hospice facilities [13].

Assessing geographic accessibility to care facilities is of critical importance for PLWHA in rural Appalachia. While some previous studies investigating geographic accessibility have used straight line (or Euclidean) distances [14, 15] to estimates travel distances, these methods are not as good as methods that estimate travel time. Other studies have used a number of different approaches for estimating travel time to care for other health outcomes ranging from trauma [16], to cancers [17], and emergency care [18–20]. A study by Tansley et al in Nova Scotia computed predicted travel times to trauma centers using cost distance analysis [16]. In separate studies Pedigo and Odoi [18] and Busingye, Pedigo and Odoi [20] used network analysis to compute travel times for heart attack and stroke patients in East and Middle Tennessee, respectively. Schuurman et al also used network analysis to identify hospital catchment areas in rural areas of British Columbia to describe access to hospital-based care services [21]. Use of travel time estimated from road networks is a better method for assessing accessibility because: (i) it accounts for speed limits [18]; (ii) people relate more easily to travel time than distance when making travel decisions to care; (iii) travel time is a more sensitive measure than distance [22].

Only an estimated 78% of Tennessee’s population is within 30 minutes and 98% of the population is within 60 minutes from a hospice. In the Southern region, Tennessee is surpassed only by Kentucky, West Virginia, and Arkansas on both measures for lack of hospice facilities [13]. Despite the fact that the majority of individuals have expressed a desire to die at home and rural individuals expressed a desire for a peaceful death without suffering, hospice enrollment remains low: approximately 6% for adult PLWHA and <1% for pediatric and adolescent patients with AIDS [23–26]. End-of-life services, like hospice, are likely inaccessible within Appalachian regions due to known barriers of rural geographic landscape, remote access of the region and marginalization [9, 10].

In a study evaluating hospice and geographical relationship to cancer decedents, 76% of Alabama counties contained at least one hospice facility with an average distance to hospice care of 9.8 miles. Of note, 52% of patients dying of cancer received hospice care, and of non-users, 77% were within 20 miles of a hospice [27]. The number of individuals with cancer using hospice is significantly greater than PLWHA [25]. While this might suggest that the Southern region is well served with hospice facilities, Tennessee (TN) has more geographic barriers than Alabama (AL) and may, therefore, have more problems with access than AL. Lindley and Edwards found that pediatric hospice accessibility in the eastern region of TN, including Knoxville and areas of Appalachia, remains low with a decreasing number of facilities, despite increasing needs. From 2009 to 2011, the number of hospice providers for pediatric patients dropped from 42% to 32% while counties needing hospice but lacking the resources increased from five to ten [28]. The observed pattern is the need and growing resources of hospice facilities (approximately 41% from 2000) in urban areas with concurrent increasing need and dissolving hospice resources in rural regions [29].

Due to the increasing need for hospice services and lack of availability, it is imperative that all EOL services be investigated. In particular, PLWHA face barriers beyond geographic access; given that only access to hospice services has been investigated in this population, the objective of this study was to identify and describe the geographic distribution of hospice, homecare, and nursing home facilities in order to assess and identify disparities in and access to a more diverse set of resources for EOL care among PLWHA in the Appalachian regions of TN and AL.

Materials and methods

Results

Overall, 229 subjects who met inclusion criteria completed the ACP survey across the Appalachian counties of TN and AL (Table 1). Of the subjects completing the survey, eight (8) individuals provided a gender other than male/female (e.g. intersex [n = 1], transgender [n = 2], female-to-male transgender [n = 1], male-to-female transgender [n = 1], other [n = 2], and genderqueer/androgynous [n = 1]); data for these individuals are not included in Table 1. Given that we were unable to ascertain the precise reach of our survey, it is not possible to report an accurate response rate. As a point of context and significance for the results of the GIS analysis below, the ACP survey revealed important findings pertaining to subjects’ preferences at EOL. First, 86% of subjects (n = 196) stated they wished to die in their own homes. The majority of the respondents also indicated a desire for healthcare providers who would be able and willing to come to their homes to provide care. To remain at home when death is imminent varies with progression of HIV as well and the presence of comorbidities (52% of respondents [n = 119] reported other health conditions in addition to HIV) might require professional in-home health care, or at least an informal care provider. As many as 44% of the respondents anticipated that there would be nobody to take care of them at EOL (n = 102).

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Table 1. Demographic characteristics of survey respondents from Alabama and Tennessee.

https://doi.org/10.1371/journal.pone.0243814.t001

Geographical distribution of hospice and home healthcare facilities

There were 32 hospice and 69 home healthcare facilities in the Appalachian region of Tennessee while the Appalachian region of Alabama had a total of 110 hospice and 86 home healthcare facilities. As expected, most of the care facilities were located in urban centers. Notably, the disparities in distribution of the care facilities are more dramatic in Tennessee than Alabama. This was evidenced by the fact that sixteen counties in Tennessee did not have either a hospice or a home health care facility. This was not the case in Alabama where only two counties did not have either a hospice or home healthcare facilities (Figs 1 and 2).

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Fig 1. Travel times to hospice and home healthcare in Tennessee.

“The Figure was created by the authors and published under a CC BY license, with permission from ESRI, original copyright [original copyright year]”.

https://doi.org/10.1371/journal.pone.0243814.g001

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Fig 2. Travel times to hospice and home healthcare in Alabama.

https://doi.org/10.1371/journal.pone.0243814.g002

Geographic distribution of residence of HIV patients in relation to clinics

Tennessee.

The geographical distribution of the communities of residence of PLWHA living in Appalachian region of Tennessee who participated in the study, relative to travel time to clinics where they received care, is shown in Fig 3. The majority of the patients tended to live in the more urbanized areas. Although it is clear that the majority of the patients have access to the clinics from where they received care within 30 minutes of travel, this was not always the case. The areas around Athens especially stand out as having relatively high numbers of HIV patients that participated in the study and that had to travel over 1 hour to the clinic where they received care. Other areas where patients had to travel 45 minutes or more for care were Kingsport, Morristown, Cleveland and Jasper (Fig 3).

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Fig 3. Geographical distribution of zip codes of residence of HIV study participants in relation to traveling time to the clinics they attended in the Appalachian region of Tennessee.

Note: Data on density of patients in this map is based on respondents to the questionnaire survey.

https://doi.org/10.1371/journal.pone.0243814.g003

Alabama.

Contrary to the findings in Tennessee where most PLWHA participating in the study resided in the urban areas, the majority of PLWHA in Alabama who participated in the study mainly lived in the more rural areas (Fig 4). Due to this rural-urban shift in the distribution of patients, several PLWHA in the Appalachian region of Alabama had to travel more than 1 hour to the clinic where they received care. Moreover, even among those who had access to their clinics within less than one hour of travel, a significant proportion still had to travel for more than 30 minutes (Fig 4). Worth noting are PLWHA living in Stevenson and most of Greensboro and Fayette who could not reach the clinic they attended within 1 hour of travel. Moreover, PLWHA living in areas such as Jasper, Gainesville, Talladega, Columbiana and Decatur generally had to travel for over 45 minutes to receive care (Fig 4).

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Fig 4. Geographical distribution of zip codes of residence of HIV study participants in relation to traveling time to the clinics they attended in the Appalachian region of Alabama.

Note: Data on density of patients in this map is based on respondents to the questionnaire survey.

https://doi.org/10.1371/journal.pone.0243814.g004

Discussion

The high prevalence of HIV in the southern portion of the US is the basis for the understanding that health care services are vastly needed in the region [6]. Yet, access to services, including EOL care had yet to be investigated in this region. Understanding how Appalachians perceive their health is a dynamic that precedes many other health concerns for this population. 74% of Appalachians consider themselves as healthy, despite opposing medical reports; this raises a concern for the interplay in perceived versus actual health [33]. Noting this discrepancy exemplifies the lack of health education in the region, which could be from a lack of access to services. Similarly, this study demonstrates that access to services for EOL care among PLWHA in the Appalachian region was significantly lower than the level of need. Long drive times to access care services could be over an hour. The long drive time is important to note due to restrictions in rural areas where individuals living with a chronic non-cancer diagnosis, such as PLWHA, have reduced access to specialist palliative care programs [34]. This is in direct contradiction to the services that were preferred, as demonstrated by the survey portion of our mixed methods study. As many as 86% of the respondents indicated wanting to die at home, yet, the majority lived alone; and 44% of them reported that they were concerned that there would be nobody to care for them at EOL. In order to provide in-home EOL care to PLWHA, they must have access to EOL care resources, including palliative care.

Additionally, the distribution of healthcare services as a whole in the Appalachian region is low. For example, the supply of primary care physicians per 100,000 people is 12% lower in Appalachia than the national average [35]. Not only are primary care services inadequate to meet patient needs, the same is true for hospice, homecare and nursing home services for EOL care, as validated by the use of GIS analysis in this study. The need for EOL services is evident given the moderately high rates of HIV in many areas among individuals who had drive times that exceeded 30–60 minutes to access hospice and home health services. Urban centers were found to house the majority of services. There was a total of 32 hospice and 69 home healthcare facilities in the Appalachian region of TN while the Appalachian region of AL had a total of 110 hospice and 86 home healthcare facilities. Several counties in Tennessee did not have either a hospice or a home health care facility. This was not the case in Alabama where only two counties did not have either a hospice or home healthcare facilities.

Future research is needed to address how access to EOL services can be improved for PLWHA in addition to determining planned expansion for EOL and advance care planning services. Although it is clear that there is a lack of facilities to provide these services in proportion to the number of people who require it, expansion of EOL care across other domains could be an option. Investigating how PLWHA can receive EOL services despite a lack of access to care and someone to care for them is another area that is ripe for future investigations. Further, future studies should explore individuals’ understanding of and importance of advance care planning and EOL care among PLWHA as it relates to quality of life.

A major gap exists in the science pertaining to the use of home care facilities on provision of EOL care. Further, while it is important to use large data sets to generate associations between access to EOL care and place of death, this approach does not account for patient preferences about where they wish to die. As such, the current state-of-the-science is inadequate to explain the influence of patient preferences on relationship between place of death and access to EOL care. Considering it is estimated that the aging population will result in an increase in the annual death rate from 38% in 2014 to 53.6% in 2040, EOL care provision must double [36]. The findings from this study demonstrate the critical need for policy development, mandating the integration of hospice services into the financing of healthcare systems at all levels of care, both community-based and in acute care settings.

Conclusions

We have shown evidence of the disparities between need and access in the Appalachian South regarding hospice, homecare, and nursing home services among PLWHA. One of the most important findings of this study is the fact that although PLWHA in South Central Appalachia prefer to die at home, the hospice/homecare infrastructure and resources are overwhelmingly inadequate to meet these needs. The same geographic situation is faced by thousands of chronically ill persons in Southern Appalachia who may also prefer to die at home. In that sense, these findings are generalizable to a much larger population of individuals. This study was comprehensive in painting a detailed multi-perspectival picture of needs, resources, and barriers to care access, based on multiple data sources and mixed methods.

Acknowledgments

The authors thank the research participants who completed the surveys and the study team for their assistance with data collection.