Journal of the American Association of Nurse Practitioners
Background and purpose: The aim of this literature review is to explore barriers and potential solutions related to hospice (HC) and palliative care (PC) services among rural residents. Although the healthcare system is continually advancing, healthcare providers may not be optimizing HC and PC referrals for the growing rural population who underutilize these services. Suggested methods to close the utilization gap between HC and PC services among rural patients appear feasible, but universal effectiveness cannot be determined.
Methods:An integrative literature review was conducted to evaluate diverse sources of literature. An electronic literature search was carried out using databases MEDLINE, CINAHL, Cochrane, PsycINFO, and Pubmed. The search was limited to English only, full text, peer reviewed, and published between 2010 and 2016. Search terms included rural, hospice, palliative, care access, and barriers.
Conclusions: There are several barriers that interrelate to decreased utilization of PC and HC for rural populations and there are many options for overcoming them to equalize care.
Implications for practice: Although advances to the general healthcare system are expediently rising, the rural patient population seems to fall short of these important life-changing services, especially in the realm of PC/HC. Beginning in primary care, this patient population can be affected and included in a positive manner.
Death is a taboo topic that has been institutionalized by healthcare providers and is often seen as failure of the provider to “fix” the patient (O'Brien & Jack, 2010; Smith, 2014). This needs to be overturned because the baby boomer generation coupled with medical advances are largely responsible for the growing elderly population of persons aged over 65. Elderly Americans could reach 88 million by 2050, nearly doubling the current population number (Artnak, McGraw, & Stanley, 2011). Not everyone cared for by modern medicine will get better; some will die despite the most advanced treatments and best quality care offered. “Most deaths are negotiated and occur after a period of employing life sustaining measures” (Artnak et al., 2011, p. 142). It has been said, “You prevent what you can, delay what you cannot, and support an optimal quality of life within the patient's value system for as long as possible…death is certain but the timing is not” (Artnak et al., 2011, p. 141). This aging population comes with a unique set of needs and demands from the healthcare system, the complexity of which is furthered by rurality. Although the elderly are not the only patient population to utilize palliative (PC) and hospice care (HC), they are by far the largest population to do so. Because the growth rate of this population is expected to continue, it is anticipated that these services will be at an increased demand over the next several decades.
Researchers do not have one single definition of rural. The generalized definition is a geographical area not neighboring a city or town with sufficient healthcare resources, not greatly populated, with predominance of medically underserved patient populations (Lynch, 2013). The less populated a county is the higher degree of poverty and less likely there is to be a hospiceagency to provide care. It is difficult to decipher how many counties in the United States do not have any HC because of the fact that some agencies provide services to multiple counties (Campbell, Merwin, & Yan, 2009).
HC and PC are support systems for patients and their families. These services enable patients with a life‐limiting illness to live as “normally” as possible until death and then continue to support families during their bereavement (Ciemins, Brant, Kersten, Mullette, & Dickerson, 2015). More than just compassionate care is provided; it is care for the body, mind, and spirit. Both services provide a team approach to medical care, pain management, and emotional and spiritual support individualized to the patient, which is typically provided in the home; it neither increases nor decreases life expectancy (Azami‐Aghdash, Ghojazadeh, Hossein‐Aghaei, Naghavi‐Behzad, & Asgarlo, 2015; Van Vorst et al., 2006).
There are some basic differences between HC and PC. Patients can be referred to PC any time throughout the course of a chronic illness. Often, it occurs when clinical decline from the illness begins and the patient begins to experience treatment failures. It focuses on chronic illness and symptom management for chronic diseases while the patient may still be pursuing curative treatments (Artnak et al., 2011). Referral can start early in the course of chronic illness without a projected time frame of impending death. This care is ongoing for chronic disease management, most often performed in the community within the patient's home (Artnak et al., 2011; Kaasalainen et al., 2011). Many but not all agencies that offer PC services also have HC services. As the chronic illness progresses and the patient's physician determines a prognosis of 6 months or less, the hospice referral process can begin. Transferring from one service to the other is generally a seamless process.
When hospices began to boom in the 1970s, care began for patients as they died, often in a hospice house or institution. However, HC referrals should occur when it is recognized that the illness trajectory is leading toward death, and the attending physician certifies the patient likely has 6 months or less to live if the disease continues to progress along the predicted natural course (Artnak et al., 2011; Hardy et al., 2011). Early referral allows HC to focus on alleviating suffering and improving quality of life during the time of the life‐limiting diagnosis while not continuing life‐prolonging measures. This care can occur wherever the patient calls home—their home, a family member's home, or a nursing facility. Approximately 90% of HC involves staff making home visits.
Typically, HC patients have more frequent nurse visits than patients in PC. Hospice visits involve nurses performing patient assessments, education, medication and symptom management, crisis management for acute symptoms, postmortem care, and family support (Carlson, Bradley, Du, & Morrison, 2010; Kaasalainen et al., 2011). Additionally, patients in HC have 24/7 access to a nurse for an acute crisis visit if needed as compared to PC patients who only have visits for scheduled care.
The literature review will focus on utilization of palliative and hospice services by all rural patient demographics. There will be no limitations imposed by age, race, or other defining characteristics because PC and HC is available for any patient meeting the eligibility criteria. Living in rural communities is negatively associated with HC and PC utilization, yet these patients exhibit poorer health status and greater need for care (Friedman, Helm, & Woodman, 2012; Watanabe‐Galloway et al., 2014). The diminished utilization of these services among the rural population is the basis of this review. Included will be strategies for overcoming barriers to use. Some barriers to referral are not unique to rural residents; they are shared with urban services (Kaasalainen et al., 2011). However, they are still valid barriers to be examined. As this type of care transitions into more home‐based cases, the unequal use of HC and PC services needs to be addressed and the barriers to these services explored.
An integrative literature review was conducted to evaluate diverse sources of literature. An electronic literature search was carried out using databases MEDLINE, CINAHL, Cochrane, PsycINFO, and Pubmed. The search was limited to English only, full text, peer reviewed, and published between 2010 and 2016. Search terms included rural, hospice, palliative, care access, and barriers that resulted in 1172 articles. Inclusion criteria encompassed barriers, challenges to HC or PC, rural HC and PC, access to HC and PC, and comparisons of rural and urban hospices. Articles were excluded if there was no mention of experiences of care, or obstacles or barriers to HC or PC. Titles and abstracts were reviewed for appropriateness, which included quantitative and qualitative studies. There were no randomized clinical trials. Of the original 1172 articles, 25 met inclusion criteria for this review. Four articles were hand‐picked from 2004 to 2009 because they were in several reference lists and contributed correlating information. Of the articles included, three were systemic reviews, five were qualitative studies, one was a cross‐sectional study, three were observational studies, and four were survey studies. Remaining articles were utilized for their historical and/or factual content concerning HC and PC.
The selected articles were analyzed and organized into five identifiable themes. Barrier themes to HC and PC utilization were identified as provider, education, financial/policy, geographics, and patient. Provider educational barriers refer to both formal prelicensure education and postlicensure continuing education. Patient barriers include but are not limited to the ruralculture of this population.
An overview of barriers as identified within each article is provided in Table 1. As noted, some articles identified more than one barrier. This literature review will introduce and discuss the barriers in terms of most frequently encountered to least frequently encountered. Regardless of hierarchy, all barriers carry significance as they impact patient care.
Thirteen articles mentioned provider barriers. These barriers included provider shortages, low comfort level discussing HC and PC referrals with patients, limited scope of practice for advanced practitioners, and overconfidence. Each provider barrier identified from the literature review is discussed.
Nurse practitioners (NPs) and physician assistants (PAs) often fill the provider role in rural areas because of physician shortages (Artnak et al., 2011; Campbell et al., 2009). Although these advanced practitioners partially fill the gap, rural communities continue to struggle because providing basic primary care to these communities is lacking. Additionally, shortages of HC and PC specialty providers, along with primary care physicians, are a common theme in rural areas (Campbell et al., 2009; Freeman, Heckman, Naus, & Marston, 2013).
Low provider comfort level
All three provider roles (physician, NP, and PA) reported inadequate preparation for psychosocial care of terminally ill patients (Lynch, 2013). Providers are often not comfortable talking to patients and families about referral to HC and PC services. It is their job to fix their patients and when they cannot, it is natural to feel like they have failed. Although this is not the case, this preconceived idea can make the referral conversation more difficult for the provider (Smith, 2014).
Limited scope of practice
Statutory laws limit NPs' and PAs' ability to admit patients into hospice. This can delay or even defer access to care services if these providers must defer HC referral to a physician. At this time, only physicians can certify that a patient has a terminal illness with less than 6 months to live and admit the patient into HC; they act as the gatekeeper to these services (Artnak et al., 2011; Campbell et al., 2009; Love & Liversage, 2014; Lynch, 2013). PC is billed under Medicare Part B (medical insurance) benefits and does not have the same physician certification restriction; PC services can be billed by providers similar to traditional medical care services.
Providers’ overconfidence to manage a patient's symptoms and disease process independently blocks HC/PC utilization. Providers often do not account for other aspects of care these services provide, such as durable medical equipment, legal papers (living wills, Do Not Resuscitate [DNR], Medical Orders for Scope of Treatment [MOST] forms), spiritual counseling, home‐certified nursing assistant/volunteer care, etc. Lack of referral happens more so with patients who do not appear to be physically acutely ill on the outside, but may be suffering emotionally or spiritually (Love & Liversage, 2014).
Lack of education was identified as a barrier in 13 articles. The reasons were inclusive of unfamiliarity with HC and PC referral criteria, uneasiness in communicating difficult news, and inadequate formal education on end‐of‐life care. Each education barrier identified from the literature review is discussed.
It is helpful for every provider to be familiar with basic concepts of what HC/PC services can offer patients and their families. Providers do not feel they are educated well enough in the concepts of when or how to refer patients (Freeman et al., 2013). Often, end‐of‐life care is not a specific class in prelicensure programs. Unless the provider specializes in HC/PC or chooses to find one of the sparse continuing education classes focusing on end‐of‐life care, there is little formal education on when to refer patients to these services (Love & Liversage, 2014.) Referral processes are often left to organizational regulations that are aimed to guide providers, but do not individualize patient care.
Being able to communicate the benefits of transitioning from curative to PC and comfort care services can be a difficult conversation for many providers to have with their patients. Providers may often feel they have failed their patient by being unable to cure their terminal disease (Bakitas et al., 2015). These are difficult conversations that without proper training are easily deferred because they often come with negative reactions from patients and families when they face the idea that they will not get better.
Referring back to provider overconfidence, end‐of‐life care is not thoroughly taught in most undergraduate, graduate, or medical schools. As terminal diseases progress, acute deterioration and managing signs and symptoms (ranging from dyspnea, delirium, pain, and psychosocial dynamics) can be more complex than providers were initially prepared to manage (Fink, Oman, Youngwerth, & Bryant, 2013). When providers are not prepared to manage these conditions, patients suffer.
As health care advances, there are few formal education classes that providers feel are easily accessible, especially for rural providers and interdisciplinary teams (Klinger, Howell, Zakus, & Deber, 2014). Not only are providers graduating from programs feeling underprepared to manage terminal illness, they are also reporting difficulty finding continuing education classes to make up for this prelicensure lack of education. Most schools do not incorporate end‐of‐life care into their standard curriculum (Lynch et al., 2010).
This theme was discussed in 11 articles. Three were specific to reimbursement regulations and policy barriers; nine were specific to Medicare being a financial barrier. Reimbursement regulations and policy barriers are each discussed further.
Medicare is the largest payment source for hospices. As a result, Medicare controls most of the reimbursement regulations and policies for these services. Medicare uses a hospice wage index and adjusts rates for reimbursement for HC (Artnak et al., 2011). Payment rates for ruralhospices are lower than for urban hospices, despite the idea that rural hospices typically have more costs to operate, such as longer drive times for home visits, more mileage reimbursement, and increased staff time for the extended travel (Lynch, 2013; Virnig, Moscovice, Durham, & Casey, 2004; Wang et al., 2015). Virnig et al. (2004) estimated that the more remote hospices receive only 56% of the rate of urban reimbursement from Medicare compared to urban hospices. In regards to PC, Medicare does not use the term “palliative care,” so these services are covered under Medicare Part B (medical insurance) benefits and services provided under this branch of care are billed to Medicare, which is inadequately funded (O'Brien & Jack, 2010).
Family members are prohibited from being paid for their care services that would otherwise be covered by Medicare. Families with lower socioeconomic status typically have more limited resources so family members must continue to earn wages while balancing end‐of‐life care for their loved one. Inability to receive payment to care for their loved one compounds this problem, despite the idea that others providing the same care would be paid for their services (Artnak et al., 2011).
Medicare policy regarding HC states that not only do patients need a 6‐month until death certification from a physician and the hospice medical director, but also must withdraw from curative treatment (not the case with PC). This policy persists despite the Robert Wood Foundation study that found dual treatment (curative and symptom control) does not increase cost for reimbursement (Friedman et al., 2012; Hardy et al., 2011; Lynch, 2013). For many families, these policies are barriers to utilizing HC services if they are not yet prepared to abandon curative treatment attempts.
Six articles were specific to geographical barriers to care. The themes in relation to geography included lower socioeconomic status, healthcare provider challenges related to isolation/distance, and limited accessibility.
Lower socioeconomic status
Simply put, “rural areas are poorer” (Artnak et al., 2011, p. 143); poverty is a risk factor for poor health outcomes (Artnak et al., 2011). Some remote locations lack modern conveniences taken for granted, such as air conditioning, indoor plumbing, heat other than a woodstove, and small closed‐off rooms with long narrow halls of older style 19th‐ and 20th‐century homes. Each of these home design obstacles are more frequent in isolated rural settings and can make home care near impossible at times (Kaasalainen et al., 2014).
Healthcare provider challenges
Many HC and PC employees are local to their small towns and personally know most, if not all, of their patients. The boundary between work and personal gets blurred, coupled with less professional support, consultation resources, and time for debriefment compared to their urban counterparts. It takes more money to ship supplies to rural areas, and more money to drive far distances between patients, as most HC/PC is home‐based care. Added driving contributes to higher mileage reimbursement and enhanced vehicle wear and tear. Inclement weather is a barrier along with poor road conditions, which can make travel difficult. When the nurse is making visits, whether scheduled or for acute crisis, the long distance between homes limits the number of patients who can be seen in a day (Kaasalainen et al., 2014; Kaasalainen, 2011; Van Vorst et al., 2006).
Additionally, staff retention and recruitment is low, which places higher burden on the staff. HC has the need to provide 24/7 access to care by trained staff. A nurse must always be on call if the need for an emergency home visit arises in the event of an acute crisis, symptom exacerbation, or death. Despite the high burden, staff often continue to do the work because there is no one else to do it and there is a sense of community responsibility. This can lead to early burn out (Kaasalainen et al., 2014; Kaasalainen, 2011; Van Vorst et al., 2006).
According to Lynch (2013), up to 24% of zip codes not adjacent to an urban area are not served by any hospice. These patients are left to suffer or forced to decide to move away from their home for end‐of‐life care in many situations. Public transport is often not available as an option for outpatient care, while the patient is still ambulatory. Less than 10% of federal funding for public transportation goes to rural areas and public transport is available as limited services in only 60% of rural communities (Charlton, Schlichting, Chioreso, Ward, & Vikas, 2015). This makes going to see an admitting provider for HC/PC not feasible for nondriving patients without close family support.
Three articles mentioned patient‐specific barriers inclusive of fear, misinterpretation of services, and rural culture in and of itself. Perhaps the most difficult hurdle yet is patient and family barriers. Each subcategory is further described.
Fear of losing a loved one can create a sense of urgency and a desire to continue curative treatments even when they are not working, disregarding the fact that the patient may no longer wish to prolong life. Acceptance of reality and prognosis can be difficult to grasp. This situation becomes more difficult when healthcare providers are not comfortable having frank conversations about disease processes and all options/services provided by HC and PC (Love & Liversage, 2014).
Misinterpretation of services
HC and PC referrals can be inappropriately preconceived as negative options, seen as giving up on a family member. Sometimes patients and families are just not ready to hear these options or discuss end‐of‐life care. According to Artnak et al. (2011), well‐informed patients make better decisions for care.
Rural patients tend to be less trusting of the healthcare system likely because of their decreased education and increased poverty (Artnak et al., 2011). They often “perceive staff and providers as mistrusting of them … they are also more likely to think they are not getting equal treatment and that providers who discuss treatment withholding or withdrawal are doing so to save money” (Artnak et al., 2011, p. 151). They also more frequently fail to understand the physician/patient conversations relating to their terminal diagnosis, which may lead to uninformed decision making (Kaasalainen et al., 2014).
The idea that there are several barriers that interrelate to decreased utilization of PC and HC for rural populations is a basis for overcoming them to equalize care. Many of the authors discuss options to overcome the barriers related to provider, education, financial/policy, geographics, and patients in their respective articles. Each option, as identified in Table 2, has its validity and concerns.
Expanding the role of NPs and PAs to allow them to practice to their full scope of practice will help alleviate the physician bottleneck for hospice admissions (Artnak et al., 2011). At this time, the Centers for Medicare and Medicaid Services (CMS) only allow medical doctors and doctors of osteopathy to admit patients into HC. This concept of allowing full scope for NPs and PAs can help equalize patient access to care (Artnak et al., 2011; Campbell et al., 2009; Lynch, 2013).
Education is perhaps the easiest barrier to overcome. Incorporating HC and PC into curriculums and offering more clinical rotations in this area is one starting place. There are also several great continuing education opportunities, including evidence‐based communication skills training programs (Oncotalk, Comskil, ELNEC, and EPEC). Distance and web‐based courses for professionals who are unable to travel or attend weekend workshops can provide professional education, support, and networking. Agencies offering to pay for all or part of the classes will help alleviate some of the financial burdens for quality continuing education courses (Ciemins et al., 2015; Fink et al., 2013; Rosenberg & Canning, 2004). Access to electronic libraries can help professionals keep up‐to‐date with HC and PC (Rosenberg & Canning, 2004). A “pocket card” care guide has been developed as a tool to aid in assisting providers when to consider HC referral (Miller, 2015). This card can be accessed online at http://geriatrics.uthscsa.edu/tools/Hospice_elegibility_card_Ross_and_Sanchez_Reilly_2008.pdf.
CMS reimburses for telemedicine services; however, it is limited and has inconsistent rates across the nation (Charlton et al., 2015). Vernig et al. (2004) suggest a reevaluation of Medicare reimbursement rates for rural hospices. In the past, payment policies have been adjusted by CMS to provide equal access to care services for all populations. If the pay gap could be closed, there would be more potential to provide equal services to rural patients. Other federal funding could also be encouraged to help alleviate the higher cost of rural operation.
The concept of telehealth/video‐conferencing with patients and families is brought up as one option to bridge the gap of distance and provider shortage (Bakitas et al., 2015; Charlton et al., 2015; Lynch, 2013). The startup cost for many rural hospices would be damaging at first without financial assistance. This would likely pay off in the long term by better patient outcomes and family satisfaction with the ability to assess and guide care by the nurse without having to make a home visit to manage symptoms (most hospices have acute medication kits families keep at home). However, unavailability of broadband Internet and shoddy cell phone coverage in many rural areas may persist as obstacles (Charlton et al., 2015). HC and PC that enables the patient to remain at home can have positive financial outcomes for the families, enabling the family to work and take less time off for travel and hospital or facility visits, which can be accomplished via telehealth technology (Bakitas et al., 2015).
There is a paucity of information pertaining to ways to overcome rural culture as a barrier to care and the influence it has on end‐of‐life decisions. Early and open discussion about end‐of‐life care options should be routine for chronic and life‐limiting diagnoses so that patients can fully participate in their care plan and have their wishes honored until death (Lynch, 2013). This can help to bridge the gap of mistrust rural families often have with healthcare systems and positively influence rural families to participate in HC/PC services (Artnak et al., 2011). This open communication can also serve to ease patient and family fears and correct misconceptions. Likewise, early entry into PC programs that have the option to bridge to a hospice program within the same agency may also have the ability to foster trusting relationships between the family, patient, and provider and is likely to help promote the acceptance of the HC referral (Artnak et al., 2011). It is also important to recognize that good patient experiences can have great impact on a rural community where word of mouth from neighbors can be a better referral source than the best educated provider. Building strong provider/patient relationships takes time and effort.
During end‐of‐life care, there is little room or time to correct errors. Patients only die once and healthcare providers need to “get it right the first time” (Bakitas et al., 2015, p. 461). The effects of quality HC and PC services improve quality of life and decrease financial burden for both patient and family (Bakitas et al., 2015). The sooner patients are referred to these services, the more quality life and decreased symptom burden and caregiver burden occurs.
The benefits of access to HC and PC services are clear. Patients receive better quality of life and caregivers have reduced caregiver burden when they have these services provided to them. Although advances to the general healthcare system (such as improved computer assisted technology, genetic knowledge, and rapidly changing precise treatment options) are expediently rising, the rural patient population seems to fall short of receiving these important life‐changing services, especially in the realm of PC/HC. Beginning in primary care, this patient population can be affected and included in a positive manner. Awareness of the gap in service is merely the beginning, next is the time for change.
This study was supported by Western Carolina University in partial fulfillment of the MS(N) degree Research Project Requirements.
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