Abstract
Context
The environment in which end-of-life care is delivered can support or detract from the physical, psychological, social, and spiritual needs of patients, their families, and their caretakers.
Objectives
This review aims to organize and analyze the existing evidence related to environmental design factors that improve the quality of life and total well-being of people involved in end-of-life care and to clarify directions for future research.
Method
This integrated literature review synthesized and summarized research evidence from the fields of medicine, environmental psychology, nursing, palliative care, architecture, interior design, and evidence-based design.
Results
This synthesis analyzed 225 documents, including 9 systematic literature reviews, 40 integrative reviews, 3 randomized controlled trials, 118 empirical research studies, and 55 anecdotal evidence. Of the documents, 192 were peer-reviewed, while 33 were not. The key environmental factors shown to affect end-of-life care were those that improved 1) social interaction, 2) positive distractions, 3) privacy, 4) personalization and creation of a home-like environment, and 5) the ambient environment. Possible design interventions relating to these topics are discussed. Examples include improvement of visibility and line of sight, view of nature, hidden medical equipment, and optimization of light and temperature.
Conclusions
Studies indicate several critical components of the physical environment that can reduce total suffering and improve quality of life for end-of-life patients, their families, and their caregivers. These factors should be considered when making design decisions for care facilities to improve physical, psychological, social, and spiritual needs at end of life.
Keywords: end-of-life care, environmental design, interior design, architecture, palliative care, terminal illness, hospice
Introduction
Motivated by a desire to understand and better inform the design and operation of hospice and end-of-life (EOL) care settings, we undertook this integrative literature review. Palliation, although not specific to EOL care, was employed in this review as an umbrella term because of the focus it places on relief of debilitating symptoms and suffering.
Access to palliative care, particularly for patients at the EOL, can been viewed ethically is a global human right (1, 2). Patients who have reached EOL are often at their most vulnerable state. As physical function declines and disease symptoms impact quality of life, these people, as well as their loved ones and care providers, can experience numerous symptoms such as fatigue, anxiety, fear, anorexia, depression, anger, pruritus, constipation, pain, sleep disturbance, dyspnea, nausea, and depression (3, 4). EOL care is the array of support and clinical care given to individuals during final weeks and months of life to relieve these conditions (5).
The conceptualization of palliative care at EOL has its roots in the thinking and work of Cicely Saunders, founder of the modern hospice movement (6). Her idea of “total pain” includes the physical, emotional, social, and spiritual dimensions of distress, which should all be acknowledged and addressed (6, 7). A prime example involves the physical EOL care environment and its amenities. Built environment factors can significantly affect quality of life (8–10) and make important contributions to a multidimensional approach for managing and minimizing total pain (11). These environmental factors can also influence patients’ ability to tolerate disease symptoms and assert control of their bodies and emotions and can enhance caregivers’ abilities to meet the needs and wishes of people who are terminally ill (12).
Palliative EOL care supports individuals’ goals and acceptance of the inevitable. At times, it may help to prevent costly repeat visits to emergency rooms and readmissions to hospitals for care that may be unwanted and often unbeneficial. Yet for palliative EOL care to be effective, resources need to be directed carefully. Unfortunately, very few guidelines exist about how to direct these funds in designing healthcare facilities or making adaptations to private residences.
This review summarizes the existing literature in both medical and environmental design that focuses on physical environments and related policies and procedures that help alleviate total suffering (physical, emotional, social, and spiritual), manage symptoms, improve quality of life for EOL patients and family members, and support caregivers in delivering compassionate care. We report on the aspects of the physical environment that emerged as significant, explain trends from the literature, and discuss opportunities for future research. In each section, we report on the related evidence from non-EOL settings (e.g., dementia patients, acute care patients) that may have the potential to be applied to EOL environments.
Method
An integrative review provides a comprehensive picture of the existing evidence and highlights research gaps (13, 14). We look at both peer-reviewed and non-peer-reviewed qualitative and quantitative research literature, and we present the current state of the topic and directions for future research.
Search Method
We searched 16 environmental design and clinical databases using key words in various combinations (Table 1). Searches included literature published between 1965 and 2015 from all EOL care settings, including terminal care facilities, hospitals (including adult and pediatric intensive care units, palliative care facilities, and oncology wards), hospices, homes, critical care units, and nursing facilities. The review was then expanded to include non-peer-reviewed written material that is not published commercially or is not generally accessible, including valuable information regarding the best practices in relevant fields, conference proceedings, design journals, opinion-based literature, and design guidelines. The screening of the initial search yielded in 323 articles with relevant titles abstract and key words. We reviewed these articles’ full content and excluded those not directly relevant to the physical environment of care or related policies and practices. The remaining 225 documents, including 120 of on EOL populations and 105 on non-EOL populations with relevance to EOL settings (e.g. individuals which advanced illness, patients in critical care, dementia patients), were used.
Table 1.
Literature Search Strategy
Medical Literature (non-pharmacological) | Evidence-based Design Literature | |
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Databases Searched |
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Physical Environment Keywords |
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Setting Keywords |
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Variable Keywords |
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Decoding Themes and Topics
The articles were organized and counted according to their relationship to independent variables (design interventions), mediating variables (environmental factors affected by design intervention), dependent variables (effect on persons within the environment), key words, populations of interest, applicable settings, and design implications. Articles with similar independent and outcome variables were clustered; interrelationships within each cluster were studied; and the emergent topics and subtopics within each cluster were recorded. We documented the repeatability of each theme by counting the number of studies for each pair of dependent variables and outcome variables.
Rigor
For each study, the sample size, study design, research methodology, and journal title were recorded. We divided the body of literature into five categories from most to least rigorous: randomized controlled trials, systematic literature reviews and integrative reviews, empirical research, and opinion-based literature (Table 1). This clustering system is a method accepted by experts in the field of evidence-based environmental design and was modified from the clustering system presented in New York City’s 2010 translational report Active Design Guidelines (15) , which organized literature on evidence-based design into three categories— established, emerging, and opinion-based literature—and used these categories to sort the literature by rigor. The randomized clinical trials (RCTs) that we located were evaluated for risk of bias using the Cochrane Risk of Bias developed for such trials (16).
Results
Our critical analysis of the results from 225 scholarly documents revealed several environmental factors that should be considered in order to improve quality of life and minimize suffering in EOL settings. The five factors that appeared most frequently in the literature search and that we recommend be targeted by environmental design interventions are 1) social interaction, 2) positive distractions, 3) privacy and control, 4) personalization and a home-like environment, and 5) ambient environment. Other factors discussed include spirituality, optimization of space and layouts, amenities, and cleanliness. Table 2 displays the distribution of the studies across settings and geographic locations. The information had a global distribution and included items from the United States, the United Kingdom, Canada, Scandinavia, Australia, Western Europe, Asia, and Eastern Europe. The top environmental factors are summarized by frequency and topic in the following sections. In terms of rigor, about half of the articles employed empirically sound research designs (n=118) or RCTs (n=3). The remaining documents included 9 systematic literature reviews and 40 integrative reviews and 55 pieces of opinion-based literature.
Table 2.
Distribution of the literature based on geographic location, setting, study design, and rigor
Characteristic | Environmental factor | Total | Social Interaction |
Positive Distractions |
Privacy | Home-like Environment &Personalization |
Ambient Environment |
---|---|---|---|---|---|---|---|
Population | EOL | 120 | 63 | 51 | 37 | 30 | 22 |
Other | 105 | 38 | 27 | 26 | 24 | 53 | |
Location of Study | Australia | 11 | 7 | 6 | 3 | 4 | 2 |
Belgium | 2 | 0 | 1 | 0 | 0 | 0 | |
Canada | 19 | 10 | 4 | 7 | 5 | 7 | |
China | 7 | 4 | 0 | 2 | 1 | 4 | |
Czech Republic | 1 | 0 | 0 | 0 | 0 | 1 | |
Finland | 4 | 1 | 0 | 0 | 1 | 2 | |
Germany | 4 | 1 | 2 | 0 | 0 | 3 | |
India | 1 | 0 | 0 | 0 | 0 | 1 | |
Ireland | 1 | 1 | 0 | 0 | 1 | 0 | |
Israel | 1 | 0 | 0 | 0 | 0 | 1 | |
Italy | 1 | 0 | 0 | 0 | 0 | 0 | |
Japan | 3 | 0 | 0 | 0 | 0 | 3 | |
Korea | 1 | 0 | 0 | 0 | 0 | 1 | |
Malta | 1 | 0 | 0 | 0 | 0 | 1 | |
Netherlands | 5 | 3 | 1 | 0 | 2 | 2 | |
Norway | 4 | 3 | 2 | 2 | 3 | 2 | |
Scotland | 2 | 0 | 0 | 0 | 0 | 0 | |
Slovenia | 1 | 1 | 0 | 1 | 1 | 0 | |
Spain | 1 | 0 | 0 | 0 | 0 | 1 | |
Sweden | 11 | 8 | 3 | 7 | 4 | 2 | |
Taiwan | 1 | 0 | 1 | 0 | 0 | 0 | |
UK | 41 | 16 | 18 | 17 | 15 | 13 | |
USA | 102 | 45 | 40 | 25 | 17 | 28 | |
Setting | Elderly Living Facility/Nursing Home | 57 | 27 | 18 | 19 | 22 | 20 |
Home Environment | 26 | 12 | 8 | 4 | 4 | 7 | |
Hospital Setting (e.g., Intensive Care Unit, Oncology Unit) | 116 | 60 | 42 | 37 | 21 | 33 | |
Hospice | 62 | 27 | 34 | 20 | 22 | 13 | |
Other (e.g., Lab) | 23 | 5 | 3 | 2 | 5 | 14 | |
Study Design | Systematic Review | 9 | 3 | 4 | 2 | 4 | 5 |
Integrative Review | 40 | 21 | 13 | 15 | 13 | 10 | |
Randomized Controlled Trial | 3 | 0 | 3 | 0 | 0 | 0 | |
Empirical Research | 118 | 63 | 33 | 34 | 26 | 50 | |
Anecdotal Evidence | 55 | 17 | 25 | 14 | 12 | 11 | |
Rigor | Peer-reviewed Article | 192 | 92 | 64 | 54 | 46 | 67 |
Non-peer-reviewed Article | 33 | 9 | 14 | 9 | 8 | 7 |
Quality assessment
Table 3 provides the results of the quality assessment (16) for RCT studies on EOL populations. In summary, all three RCT studies had low risk of “selective reporting” because pre-specified outcomes were clearly reported and low risk of “incomplete outcome data” because of the clarity of reported outcome data and reasons for any exclusion. Regarding “random sequence generation” and “allocation concealment,” one out of three studies was unclear due to lack of information. In terms of “blinding of participants and personnel” and “blinding of outcome assessment,” two out of three studies were categorized as high risk because they did not provide clear information to indicate whether blinding was maintained or whether the absence of blinding may not have affected the outcomes. All three RCTs included design interventions related to positive distraction, and one also included design interventions related to ambient environment and privacy.
Table 3.
Cochrane Risk of Bias for RCT Studies for EOL populations
Author | Year | Location | Environmental Factor | Setting | Cochrane Risk of Bias Criteria | |||||
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Random Sequence Generation |
Allocation Concealment | Blinding of Participants and Personnel |
Blinding of Outcome Assessment (All-cause mortality) |
Incomplete Outcome Data (2–6 weeks) |
Selective Reporting Bias |
|||||
Choi, Y. K | 2010 | US (Midwest) | Positive Distractions | Hospice | Low Risk | Low Risk | High Risk | High Risk | Low Risk | Low Risk |
Hilliard R. E. | 2003 | US (Florida) | Positive Distractions | Hospice | Unclear | Unclear | High Risk | High Risk | Low Risk | Low Risk |
Schofield, P. | 2003 | United Kingdom | Positive Distractions, Ambient Environment & Privacy | Hospital Setting (palliative care ward) | Low Risk | Low Risk | Low Risk | Low Risk | Low Risk | Low Risk |
Factor 1. Facilitated Social Interaction
Table 2 displays the distribution of the studies that stated social interaction was a key factor in the quality of end-of-life care across populations, settings and geographic locations. An appropriately designed care environment supports multiple forms of social interaction among various parties (patients, family members, and staff). Therefore, environments need to be designed to support interaction (16). The findings indicated that environmental design could enhance the following four types of interactions: patient-to-family interaction, professional caregiver-to-patient/family interaction, patient-to-patient interaction, and facility-to-community interaction. Evidence indicates that environmental solutions to enhance the above forms of interaction—such as unit and room layouts that allow closeness and proximity to others, visual access to patients, and adequate space—have been associated with increased ability for family members to advocate for the patient (18), reduced patient suffering (19), increased caregiver satisfaction (20), decreased patient loneliness (21), and positive community relations (22).
Patient-Family Interaction
Improved social interaction between patients and their families in EOL environments can enable family members to better advocate for decisions on the patient’s behalf (18). Furthermore, research has indicated that the presence or absence of loved ones in the last moments of life resulted in disparities in the quality of the EOL experience (19).
Environmental design factors shown to improve interaction between patients and families included designs that promoted physical proximity (18) and facilitated physical touch. A study of 192 dying patients in 10 intensive care units (ICUs) found that the presence of family members during a patient’s final moments of life reduced patient suffering (which may have been underestimated by caregivers) as indicated by significantly less analgesic use compared to patients who had no family members present (19). The researchers concluded that it was necessary to modify environments to promote the proximity of dying patients to their families (19). According to another study that included in-depth interviews with 33 parents after they experienced the death of a child, parents experienced strong desires to be close to the patients in order to maintain physical touch and involvement in important decisions (18).
In settings where social interactions were not supported by environmental design, relatives and family members who desired to be near loved ones suffered because of furniture limitations and slept uncomfortably in chairs in order to stay next to the patient, according to one empirical study of interviews with bereaved family members (23). Other family members who cannot endure such limitations—for example, due to lack of physical strength—may be unable to stay connected to their loved one during the last moments of life.
Professional Caregiver-Patient/Family Interaction
Caregiver-to-patient/family interactions corresponded to high levels of family satisfaction with the EOL experience in a US study of EOL patients and their family members (24). Such interactions resulted in significant reductions in the need for aggressive medical treatments (such as ventilation and resuscitation in cancer patients) and ultimately in an increase in the patients’ quality of life (25). It also helped patients and families moderate their expectations (26). Failure of the care team to thoroughly communicate patient-related information was one of the top underlying causes of families’ dissatisfaction with EOL care, according to one literature review in 2003 that investigated the advantages of using satisfaction as a measure of palliative care quality (27).
Environmental design interventions found to aid in this type of communication included improving visibility and line of sight from the caregiver to the patient and optimizing the spatial arrangement of the unit to minimize interruption. One focus group of 24 healthcare professionals from two hospitals and a hospice explained that one cause of reduced communication may be absence of visibility: According to an EOL nurse, the absence of a window in the door made her uncomfortable entering the patient’s room and prevented her from informing family members that she was there for them (28). Spatial design to streamline traffic flow also has the potential to safeguard or compromise care-related communication. In an oncology clinic in Sweden, the location of the reception area in the middle of the unit was highly regarded by staff, who credited this layout with fewer interruptions while working, increased privacy with patients during important discussions, and increased satisfaction with the ability to welcome patients and family members (20).
Patient-Patient Interaction
In the case of certain terminal illnesses, patient-to-patient interaction has been shown to improve psychological well-being (9, 29), and keeping mentally active through social engagement has been established to reduce cognitive impairment (30, 31).
Environmental design solutions shown to facilitate these types of interaction included the availability of options for shared rooms and the presence of lounge areas. A 2011 integrative review of the literature (21) examined hospital EOL environments for older patients and their families and concluded that feelings of isolation and loneliness may decrease if EOL patients are housed in shared rooms; however, there is controversy regarding the benefits of single-patient rooms in providing privacy (21, 32). Pease and Finlay (29) administered a questionnaire regarding room type to 50 patients in an oncology ward and 36 of their family members in the UK and found that 68% of the patients preferred open-bay areas over single rooms. The main reason patients chose a shared room was to avoid loneliness by building companionship and engaging in conversations (29). In a study by Rowlands and Noble (9), 12 interviewed cancer patients living in oncology wards in the UK preferred multi-bed rooms to single rooms because of the social stimulation they experienced by having roommates. Of the cancer patients in Pease and Finlay’s study, 82% (N=41) stated their wish to have a lounge as a common space for socialization and that they would make regular use of such a space if provided (29).
Facility-Community Interaction
Facility-to-community interactions may generate increased business (33) and promote a positive image of the facility (22, 34).
Environmental design may help align a facility with local needs and achieve geographical integration with service providers (33), increase volunteer opportunities (34), and create a positive image for a facility (22, 33). This concept, however, was only highlighted in best practices and opinion-based evidence. In particular, an Australian guideline for the planning and designing of hospices explained the physical proximity of the hospice facilities with a hospital, care services and amenities would help meet the needs of the dying patients from all ages and their families (33). Another example is the UK’s Enhancing the Healing Environment Program, which was developed in response to the UK Department of Health’s statement on the direct impact of the physical environment on the experience of care for people at EOL and on their caretakers. The program emphasized opportunities to expand volunteer opportunities through environmental design that focused on fostering facility-to-community interactions (34). In another example, the directors of a US long-term care facility tried to maintain a positive image in the community by using a visually appealing building design and visually separating EOL-related functions (22). The facility, for example, paid special attention to transportation of the bodies of the recently deceased, keeping this activity visually separate from nearby community groups.
Factor 2. Positive Distractions
Overall, psychological and physical benefits occurred in response to contact (both visual and immersive) with nature (21, 35, 36), visual art (37–39), and music (43–49). Furthermore, controlling odors and utilizing aromatherapy may minimize anxiety (50). Environmental design interventions that provide access to nature and to positive audio, visual, and olfactory sensory stimulation (such as visual art, music, and aromas) were identified as possessing the potential to positively distract EOL patients.
Nature
Exposure to nature has been shown to reduce patient stress and improve psychological well-being in hospital environments (21, 32). Furthermore, nature was viewed as a spiritual healer that enables people to reflect on life (51), making it a valuable element in fulfilling existential needs.
Environmental design can incorporate nature through visual access or immersion. Visual access is possible through windows to natural outdoor elements and the presence of indoor plants or gardens (21, 43, 53). Immersion is possible through the availability of pleasant outdoor elements and views such as bird feeders, ponds, water fountains, flowerbeds, and greenery (54), in addition to an accessible means to transfer the patients to the outdoors, such as patios with ramps and doors opening to the patient rooms (55, 56). Access to nature increased the satisfaction of patients and their family members with their experience relocating to an institutional setting (57). In non-EOL postsurgical patients, views of nature scenes have also been shown to reduce pain and consumption of pain medication (35). Nature scenes reduced perceived physical symptoms and improved mental health in older adults in a long-term health setting (36).
In a qualitative study of interviews with 19 caregivers of 82 deceased patients who transferred from their homes to an institutional setting, caregivers were asked which factors improved patients’ satisfaction with relocation (57). The findings indicated that patient satisfaction was determined by patients’ relationships with their care providers and by aspects of the physical environment, including patios with doors looking out to a meadow and pond. The nurses would wheel the patients into positions allowing access to bird feeders and exposure to sunlight (57). Another study of interviews with 29 family members of diseased patients in a hospital environment specifically cited a family member’s statement that her husband’s death in a private room with a view of sunrise provided a beautiful and peaceful environment that justified for the family the decision to move the patient to the ICU room when death became imminent (26).
In an empirical research study of 46 postsurgical patients recovering in a US hospital, patients in rooms with views of a natural setting had decreased use of pain medication, shorter hospital stays, and fewer negative nurse comments regarding patient condition compared with patients in other rooms (35).
Furthermore, in a qualitative analysis of structured interviews with 40 elderly patients in 3 separate long-term care facilities in the US, 17.5% of patients claimed that time outdoors ameliorated their physical ailments, and 22.5% claimed that it improved their mental state (36).
Positive Sensory Stimulation
When properly employed, positive sensory stimulation has been shown to improve patients’ mood (40, 46), reduce anxiety (40, 47, 50), help with pain management (45, 47, 47, 50), promote tranquility (47, 37), and improve quality of life (46, 47). In non-EOL settings, positive and distractive sensory stimulants were associated with reduced agitation (40, 42).
Environmental features that may help provide positive sensory stimulation and distraction include color, artwork, music, and aromas. No empirical studies were found regarding color in EOL settings, and very few were found for hospital settings. Yet several studies from other environments provided common themes and recommendations that matched EOL experts’ opinions about color usage in these environments.
Many studies have researched the effects of color on human emotions for general populations. Using an emotional scale, one study quantitatively evaluated the relationship between color and feelings of leisure, arousal, and dominance in a group of young adults in California (38). The findings associated the colors blue, blue-green, green, red-purple, purple, and purple-blue with pleasant feelings and associated yellow and green-yellow with less pleasant feelings (38). By examining past empirical research about the effects of color on humans, the authors of a 2014 literature review confirmed that color can have an important impact on people’s affect, cognition, and behavior (37). For example, the review reported that many studies indicate that blue conveys openness and peace and green promotes calmness and success. In hospital settings, another systematic review identified numerous studies in which color, along with other environmental interventions, resulted in positive patient outcomes; however, this review did not find studies that evaluated the variable in isolation (52).
For EOL care settings, a qualitative study about Norwegian hospital design collected viewpoints of experts, who indicated the importance of avoiding vapid and pale colors in patient rooms and promoted color selections to convey clean, bright, and homey surroundings (58). Another Norwegian study qualitatively analyzed eight EOL care sites after the implementation of environmental design improvements funded by the Norway’s Department of Health; the study named soothing colors as a key characteristic for therapeutic environments (53). Finally, in a set of recommendations for hospice facility interior design, an experienced EOL design practitioner (51) recommended that patient rooms feature soft, luminous colors ranging from peach to warm lilac, avoiding yellow tones, strong color contrasts, or busy patterns that are fatiguing. In common areas, however, she recommended stimulating and energizing color pallets.
Both displayed art and spaces for creating art have been applied in various healthcare settings, but empirical evidence supporting the function of art in EOL environments is lacking. In an interview conducted by Caspari et al. (58), one aesthetic expert noted that patient room walls were often neglected in decoration schemes. Incorporating bright, uncomplicated artwork, such as a stained glass window illustrating a tree, to liven the space is highly recommended anecdotally by patients, family members, and EOL experts (59, 57). In a study of non-EOL environments, surveys were administered to 210 patients and visitors in five units within a US hospital. Artwork improved the moods of 84% of patients and visitors, and participants commented that the artwork reduced their anxiety (40). In a separate study, patients exhibited reduced agitation (as measured by medication distribution) when artwork depicting realistic nature scenes was on display in an acute-care psychiatric unit (42). An empirical Taiwanese study enrolled 177 terminal cancer patient in a hospice palliative care unit in art therapy, which consisted of visual artwork appreciation and hands-on painting (39). The patients expressed improvements of emotional state (70%) and physical state (53.1%) (41). In opinion-based literature, an expert claimed that creative spaces that allowed people to create and share art in palliative care facilities could aid the process of healing, encourage celebration, and provide stability, spirituality, and identity (39).
Music can also be an important factor. One integrated 1996 review explained that the engagement of sensory processes through distraction was the underlying mechanism that explained a body of evidence on music and pain management (44). A 2005 literature review of empirical studies examined the relationship between musical therapy in hospice and palliative care settings and found that musical interventions improved pain management, anxiety and relaxation, mood, and quality of life (47). In a 2001 US study on hospice patients, music therapy was found to significantly reduce pain and improve physical comfort and relaxation (48). A randomized US study found that self-reported quality of life was higher for 40 terminally ill cancer patients in hospice care who had received music therapy than for 40 participants who did not receive the intervention and that their quality of life increased as they received more music therapy sessions (46). A survey of 72 music therapists and 92 hospice and palliative care nurses revealed that music was used to effectively distract patients and attend to patient pain (45). In an ethnographic exploratory study including a series of case studies on EOL patients at a general hospital in Ontario, researchers identified a common theme of music improving spiritual well-being and positively triggering memory (49).
Scent can also provide sensory distraction. In an empirical study in the US that assessed the responses of 17 in-home cancer hospice patients to humidified lavender oil aromatherapy (50), researchers found a significant decrease in patient pulse and blood pressure, as well as lower pain and anxiety scores, compared to the control patients. Literature reviews and empirical research indicate that about 60% to 86% of EOL patients may face malfunctioning of the sense of smell (61). Interventions that nurture the sense of smell are needed, according to one EOL environmental design expert (51).
Interventions may also combine sensory experiences. A randomized, controlled trial study of 26 EOL patients in the UK revealed a significant reduction in anxiety for participants who received an experimental treatment providing access to a multisensory intervention including color-changing fiber optics, dynamic scenes of shapes and colors, and music (60).
Factor 3. Privacy
In general hospital settings, lack of patient privacy was shown to subject patients to stress (17, 62), compromise their dignity, and diminish their personhood (13), as well as preventing family from properly grieving and gaining closure (13), creating strain and frustration for caregivers as they attempt to provide privacy (63), and even encouraging a sense of apathy from the caregivers (13). Privacy was identified as one of the most critical topics when it comes to meeting the wishes of hospitalized older adults during EOL, as well as the needs of their family members and care staff, according to a 2012 integrative literature review (21).
When EOL settings were provided with sufficient means to safeguard privacy and confidentiality (64), patients experienced reductions in sleep problems (65, 66) and stress. Appropriate environmental privacy provisions in EOL care were also shown to aid in the communication of sensitive information (18, 64).
The reviewed material covered the use of several privacy provisions in EOL care facilities, including single-occupancy rooms (65), controlled visual (32) and physical access to rooms with clear demarcation and signage (67), and designated spaces for family members and their communication when it comes to facility design and layouts (68).
In an empirical study of hospice patients in the UK, 8 out of 24 patients who indicated a preference between single or shared rooms preferred single rooms for privacy reasons (65). The preference for single rooms increased significantly for patients who were actively dying or experiencing distressing symptoms such as diarrhea or vomiting. The researchers explained that a major reason for patient requests for single-occupancy rooms at two UK hospices was the patient’s ability to better control noise and house visitors. A study that interviewed 11 care staff and 10 residents in a Swedish assisted-living facility revealed that the residents’ ability to control access to their own bedrooms was valued and recognized by both residents and care staff (67). In a Canadian empirical study that investigated the sleep quality of 13 patients in an ICU single rooms were associated with improving sleep duration (66). One study interviewed 33 parents of deceased children who had died in a US pediatric ICU about the participants’ environmental needs during the hospitalization period; the researchers found that patients shared more personal information when they were satisfied with their privacy, such as when they occupied a single-patient room (64).
In addition to single-patient rooms, privacy can be achieved through visual screens, location of bathrooms, interior windows with adjustable opaqueness, and placement of beds in hospital settings, according to a 2005 integrative literature review (32). An architectural firm hired by one US hospice facility used designated private areas and nooks for family members outside patient rooms to increase privacy by enabling family members to gather, converse, and support each other emotionally (68). Clear demarcation of patient bedrooms and observation of a “certain mode of conduct” by staff can be used to create the feeling that these areas are patients’ private, personal spaces (67).
Privacy is impossible to maintain in multi-bed patient rooms, where inevitable activity from the necessary care of roommates has been shown to be disruptive and stressful for EOL patients in palliative care ICUs (62). Patients in EOL units must deal with factors such as traumatic sights (69) and sounds (70). In particular, ICUs face many challenges in terms of privacy of dying patients (19), according to a survey of nurses about 192 deaths in 10 Swedish ICUs (19). A 2009 qualitative interview study of 9 Swedish ICU nurses anecdotally confirmed previous findings regarding undue amounts of stress faced by patients when forced to overhear resuscitation attempts and deaths of fellow roommates (62); the problem arose from a lack of space and sound or visual barriers. A US survey of 198 emergency nurses’ perceptions regarding the impact of emergency department design on the EOL experience highlighted that grief-stricken families suffered considerably from insufficient levels of privacy due to the design of the layout and spaces (71). “A few of the rooms are separated by curtains, allowing other patients and families to hear the family or a dying patient grieve,” stated one emergency nurse in that survey (71).
Factor 4. Personalization and Home-like Environments
The desire to remain at home during EOL is common (16, 57, 72), but transition to an institutional setting may sometimes be necessary. Home-like EOL settings can increase patient and family satisfaction (21) and comfort (57, 21), as well as caregiver satisfaction (73), caregivers’ opinion of the patient (74), and caregivers’ ability to connect to the patient as an individual (75).
Hiding medical equipment (76), enabling patients to customize and personalize their surroundings (17, 75, 77, 78), providing amenities to support family presence (57), and developing smaller scale care units (in contrast with the large institutionalized settings provided by many hospitals) (79) are among the factors that mitigate an institutional atmosphere and contribute to a home-like environment.
A 2012 literature review of environmental design in inpatient healthcare settings noted that designing for palliative care implies keeping medical equipment hidden from sight to promote a home-like, rather than medical, atmosphere (76). In a study interviewing caregivers about deceased hospice patients, one key element that facilitated patients’ satisfaction after the transfer from home to hospice was the quality of the physical environment, specifically the home-like atmosphere, including amenities and features that enable the presence of family members (57). Patients’ attempts to personalize their spaces with their own belongings have been shown to yield positive psychological effects for both patients, who reported higher satisfaction with the institution (77), and caregivers, who reported higher job satisfaction (73) and formed better opinions of the patients (74). In a study of 51 nursing homes units in the US, residents in units with higher levels of depersonalization (e.g., lack of books, furniture from home, and magazines) were more likely than other patients to have lower levels of satisfaction with the facility (77).
Staff members were similarly affected by personalization: Questionnaires completed by 673 staff members from 42 facilities in the UK revealed that residents’ ability to personalize the space was positively associated with staff members’ job satisfaction (73). In another study, 44 medical students in the UK viewed an elderly person surrounded by personal belongings in a more positive manner, compared to the same person in an empty room, suggesting that personalizing space may improve caregivers’ judgments of patients (74). These more favorable judgments may involve the staff recognizing patient individuality. A qualitative study by Kellehear et al. (75) documented and analyzed the bedside objects of 31 hospice residents. These researchers suggested that caregivers use personal objects as conversational prompts to better connect with the patients.
EOL facility designers have worked to better align EOL environment designs with patient wishes. A major characteristic of the “hospice movement” in institutional EOL settings was the creation of more home-like, smaller scale buildings and settings, in contrast to the institutionalized settings provided by many hospitals (79).
Factor 5. Optimization of Ambient Environment
Improving the ambient environment around an EOL patient to support quality of life and peaceful death involves numerous factors, including sound, temperature, and light. An optimized ambient environment may decrease disruptive and aggressive behavior among patients (80–83), improve patient mood and satisfaction (58), and elevate staff functioning (84). Inadequate ambient environmental components may result in increased patient behavioral aggression (83), decreased social interaction among patients (83, 85), deteriorated patient mood (85), adverse physical outcomes (86–88), and lower patient quality of life (85).
Acoustics
Sound is a vital component of the ambient EOL environment. Deliberate sound interventions, such as music, may have positive psychological and behavioral consequences (80, 82, 83). Meanwhile, unwanted sounds (noises), such as those from equipment and neighbors, may generate negative physiological and behavioral effects (83, 86–88).
For EOL patients, deliberate positive sound interventions, including white noise (80) and music (82, 89), may produce an overall calming effect. In a RCT study of hospice patients in the US, music resulted in reduction of fatigue and anxiety (89). In an experimental study in England, a 23% reduction in verbal agitation among nine dementia patients was achieved after a nursing home implemented individualized audio interventions with white noise tapes (80). In two Belgian nursing homes that housed patients with cognitive impairments, significant reductions in total agitated behaviors (63.4%), physically aggressive behaviors (56.3%), and verbally agitated behaviors (74.5%) were noted when relaxing music was played during lunch (82).
Conversely, unwanted sounds can be detrimental to quality of life. EOL environments contain many potential sources of noise, including machines and equipment, residents’ verbal agitation, and staff conversations (80, 69, 90). In general contexts, excess noise has been linked to adverse physiological and psychological consequences, including elevated blood pressure (86), sleep loss (88), decreased gastric motility in older subjects (87), reduced social interaction (85), and increased aggression and disruptive behavior (83). In 29 in-patient wards in a Korean hospital, 103 patients experienced sleep disturbance (as measured by the Pittsburgh Sleep Quality Index) that was significantly correlated to noise level (as measured by noise dosimeters) (88). Separately, in a randomized controlled trial, 21 male subjects between the ages of 22 and 71 underwent three auditory interventions, and older subjects displayed lower gastric myoelectric activity compared to younger subjects (87).
In a 2014 systematic literature review of the effect of building design on dementia patients in long-term care facilities, elevated noise level was associated with increased aggression and disruptive behavior and decreased social interaction (83). In a Spanish study of 160 nursing home residents with severe dementia, researchers found that excessive noise levels in the shared patient lounge were associated with a lower degree of social interaction among patients (85). A conceptual framework article on the impacts of the environment on palliative care patients (9) concluded that EOL patients would feel more in control of their environment if noises from alarms, voices, other patients, bodily functions, and machines were reduced. A 2014 systematic literature review indicated that reduction of environmental noise, such as staff talking and sound from electronic devices, was linked to reduced behavioral disturbances and violence in dementia patients (83).
Temperature
Few research studies have been conducted that specifically explore the relationship between ambient temperature and patient perception of comfort in EOL settings. However, several studies have found a relationship between temperature and health outcomes in elderly dementia patients, as well as in the general population. One 2014 systemic literature review on the effect of the environment on dementia patients in long-term care facilities concluded that a comfortable room temperature resulted in less disruptive behavior (83). Excessively high temperatures put the elderly population at risk for heat-related ailments, including heat exhaustion and heat stroke, and elevate risks for individuals with existing health-related conditions, such as congestive heart failure, diabetes, chronic obstructive pulmonary disease, decreased mobility, dementia or cognitive impairment, or obesity, as well as for individuals on certain medications (91). Temperatures above the average of 78.4 °F in patient bedrooms were associated with a lower quality of life for 160 dementia patients in eight Spanish nursing homes, according to responses from a proxy informant-based scale (85).
Body temperature of individuals in poor health is more variable than that of healthy individuals; therefore, providing the individual with more control of the environment, such as access to a room-specific thermostat, is beneficial. Irrespective of age, patient morbidity and dependency on others for daily functions determines sensitivity to heat (92, 93). A German observational study analyzed 95,808 nursing home residents and found that the residents who required the highest level of care were also more sensitive to temperature (92). Similarly, another study on 872 patients in health institutions in Malta (93) identified more dependent individuals as having an increased risk of hyperthermia.
Light
Lighting is a critical environmental factor in care quality, with documented impact in various patient care settings. Light may improve patient satisfaction (58); modify biological, psychological, and behavioral health (85, 94, 95); and improve vision (and therefore balance) (96, 97). Natural light may also improve staff performance, mood, and wellbeing (84, 98).
Lighting is the most important environmental factor that influences the sleep/wake cycle (97–100) and modulates the hormones melatonin (related to sleepiness and drowsiness) and cortisol (related to stress and alertness), which are linked to cognitive functioning, alertness, and sleepiness (101). Exposure to light of sufficient intensity resets the human circadian pacemaker—decreasing melatonin levels and increasing cortisol levels—and alters the sleep/wake pattern (102). Therefore, lighting levels have significant effects on patient sleep onset. In a study of 217 elderly Japanese adults, researchers found that exposure to prolonged evening light in home settings delayed sleep-onset latency (95).
Lighting effects extend to mood and behavior. Low lighting was associated with an increase in bodily signs of negative mood in dementia patients in nursing homes in Spain (85). A US longitudinal study involving 100 hours of videotaped observation of 7 Alzheimer patients in two designated day-care rooms (control and experimental conditions) indicated that lighting interventions resulted in a 41% decrease in disruptive behavior (81).
Control of glare and contrast in lighting and environmental design must be considered for EOL settings. High lighting levels can actually minimize problems for those patients, such as hearing-impaired individuals, who need to rely on visual aids, but only when glare, which causes stress, is carefully minimized (51). Elderly people rely on vision to regulate balance, so sufficient lighting, particularly at night, reduces the frequency of falls (96, 97). One study conducted by Figueiro et al. (97) investigated the postural orientation and stability of 12 elderly subjects under different lighting conditions in an experimental setting; subjects responded positively to an environment with more lighting. Similarly, postural stability of 33 older women was found to decrease as lighting conditions were dimmed in a British laboratory study (103). Falls that result in hip fractures and loss of independence can negatively affect elderly patients (104).
Natural light (as opposed to artificial light) has been identified as desirable for therapeutic EOL settings (53, 51). According to interviews with 16 nurses, artists, and architects who were knowledgeable about Norwegian hospitals, design features that make the space bright and airy and utilize natural daylight improved patient mood and satisfaction significantly (58). However, patients living in a dark oncology ward in the basement of a building felt shameful and described their care experience as being in the “waiting room of death” (20). Natural daylight has also been associated with decreased absenteeism among caregiving staff, according to an experimental study comparing two US intensive care units that differed in sunlight exposure (84).
Discussion
Access to EOL palliative care is limited, both worldwide (105) and in the United States (106, 107). Over the next decade, the need for such care is expected to rapidly increase (106) as the baby-boom generation ages (108). Designing specialized facilities for EOL care would provide the right infrastructure to support staff in providing safe, timely, and high-quality care and would support patients in managing symptoms and improving their experience. This literature review identified five key elements to be strategically targeted for improving quality of life and supporting care for EOL patients. When appropriately managed, these elements may improve patients’ psychological, emotional, spiritual, and physical well-being and overall quality of life. Family members and caregiving staff also reported that such interventions can grant them psychological and physical relief. Some examples of specific design interventions related to each environmental factor, as well as expected outcomes, are provided in Table 4.
Table 4.
Examples of design interventions and expected outcomes
Environmental Factors (mediators) |
Examples of Design Interventions (independent variables) |
Examples of Outcomes (dependent variables) |
---|---|---|
Facilitation of Social Interaction | Unit and room layouts that facilitate closeness and proximity of patient to others, visual access to patients, adequate space | Ability for family members to advocate for the patient (16), reduced patient suffering (17), caregiver satisfaction (18), patient loneliness (19), and community relations (20) in EOL patients. |
Positive Distractions | Nature (visual access or immersion), positive sensory stimulation and distraction such as color, artwork, music, and aromas. | Patient and family member satisfaction (55); perceived pain, pain management and pain medication consumption (43, 45, 46, 48); perceived physical symptoms, mood, tranquility, anxiety and overall mental health (34, 44, 45, 48); and quality of life (44, 45) in EOL patients. |
Privacy | Single-occupancy rooms, controlled visual and physical access, clear demarcation and signage, designated spaces for family members | Sleep disturbance (6), stress (15, 60), and communication of sensitive information (16, 62) in EOL patients. |
Personalization and Home-like Environments | Hidden medical equipment, customizable spaces surrounding patient, amenities supporting family presence, small-scale care units (in contrast with the large institutionalized settings provided by many hospitals) | Patient and family satisfaction (19) and comfort (55, 19) and caregivers’ ability to connect to the patient as an individual (73) for EOL patients. Caregiver satisfaction and improvements in their opinion of the patient for older patients in institutional settings (71, 72). |
Optimization of Ambient Environment | Sound/acoustics, temperature, and light | Mood and satisfaction (56) in EOL patients. Disruptive and aggressive behavior for patients with dementia or cognitive impairment (78–81). |
Environmental design for EOL must:
Support family presence—Remove barriers and provide features that foster close and comfortable proximity between patients and families to nurture interaction, facilitate decision-making, aid in closure, increase peace of mind, and enhance comfort.
Promote privacy—Provide single-occupancy rooms, visual screens, patient control over physical access with clear signage and demarcations, and a dedicated space for family members to have private conversations or maintain dignity while grieving. Privacy improves confidentiality, avoids interruptions to care-critical conversations and grieving, helps meet the desires of patients and family, and ultimately reduces stress and sleep problems.
Balance patients’ need for privacy with caregivers’ need to monitor patient condition—Improve visibility and line of sight from the caregiver to the patient, while simultaneously optimizing the spatial arrangement to minimize obtrusive and unrelated foot traffic, thereby protecting privacy and minimizing interruption during important conversations.
Facilitate social engagement—Provide shared spaces and common areas for activities to facilitate communal presence. Provide the option for shared bedrooms to those patients who desire multi-bed rooms to reduce feelings of isolation and loneliness, increase interaction among patients and family members, and keep patients’ minds active.
Address connections to the community—Enhance the visual appeal of the building and locate the EOL facility in close proximity to the community. Present a positive image to the community and foster literal, as well as implied, interaction between a facility and the surrounding community. Ensure that patients, families, and care staff have convenient access to social centers, hospitals, and care services and that volunteer opportunities are convenient to the community.
Provide direct access to nature—Develop pleasant outdoor natural elements, such as bird feeders, ponds, water fountains, flowerbeds, and greenery. Ensure access to such features through patios with doors opening onto nature and pathways that are easily negotiable by patients in wheelchairs or even beds. These positive distraction measures can improve patients’ mental state and reduce their suffering.
Provide indirect access to nature—Design interior spaces to not only incorporate plants but also have ample windows with views of pleasant outdoor elements to reduce perception of pain, improve satisfaction, and enhance sense of peace.
Feed the senses—Incorporate color, artwork, music, and aromas into EOL environments to feed the senses, reduce anxiety, lessen perception of pain, and promote tranquility.
Foster a home-like environment—Hide medical equipment, enable patients to customize their surroundings, and provide in-room amenities for family members to help prolong family members’ presence. Such measures can facilitate bonding by providing conversational prompts among patients, staff, and family; increase caregivers’ perceptions of patient personhood and dignity; and increase patient and family satisfaction.
Control noise—Employ sound-absorbing surfaces and optimize interior layout of equipment to minimize unwanted noise from equipment, residents’ verbal agitation, and staff conversations inside patient rooms. Such measures can improve communication, enhance sleep, and improve health.
Provide thermal comfort—Provide patients with adjustable temperature controls with a wide range of settings to reduce agitated behavior, improve comfort, and enhance quality of life.
Ensure ample light with a balance of natural and artificial light—Supplement natural light with artificial light during the day with provisions for glare and contrast control. Provide night lighting that supports postural orientation and stability while not disrupting circadian and biological rhythms. Proper lighting can improve vision, reduce falls, and improve mood, sleep and circadian rhythms.
A recurring theme throughout this integrative literature review was the patients’ ability to control or personalize surroundings; this concept was embedded in every identified environmental factor. It is crucial that spaces be designed for flexibility and personalization to support the range of patients’ desires.
The only controversial element found was the use of single-patient versus multi-bed rooms. A single-occupancy room better protects patient and family privacy, permits better management of smells and noise, and allows aspects of the patient’s immediate setting (such as music and temperature) to be customized for each patient. Conversely, multi-bed rooms encourage positive socialization between roommates, which may combat loneliness and boredom. Rigby (16) asserts that individual patients will favor the benefits of one setting type over the other.
Positive distractive sensory stimulation should be implemented in EOL settings. The effects of nature, in particular, have been proven to be exceptionally beneficial. Safeguarding patient privacy through environmental modifications was found to be critical in maintaining patient dignity and control, in allowing family to grieve freely, and in enabling caregivers to provide compassionate care. Creating a home-like environment in institutional EOL settings can be achieved by consciously designing the facility to imitate a home, rather than a hospital, and by encouraging patients to personalize the space with their belongings.
Finally, the ambient environment must be considered. Minimizing noise and using interventions such as white noise and music can greatly improve the ambient environment. Age, morbidity, and dependency may alter temperature preferences, and thermal conditions outside comfort levels may compromise quality of life. The benefits of an adequately lit EOL environment extend to both patients, whose mood improves and who may avoid injury, and caregivers, who demonstrate heightened work performance and wellbeing.
Limitations and Future Research Directions
This review summarized all possible environmental factors that may influence QOL for EOL patients and their family members and caregivers across various levels of evidence. We found that many of the identified factors are not backed by empirically sound evidence in EOL settings and may be considered common practice or experience-based approaches. Some design interventions that are rigorously evaluated in other settings (e.g., dementia care or acute care) on patients with advanced illness, have not been tested in EOL settings although they may be useful for reducing suffering in EOL patients. A significant gap in the research related to physical environments of EOL care—in combination with the increasing number of patients entering such care—demonstrates an urgent need for evidence-based solutions to address the spiritual, social, physical, and psychological needs of patients, family members, and caregivers.
Although a pattern of information emerges from the available peer-reviewed and non-peer-reviewed literature, there have been few research studies focusing on the key components of environmental design for institutional EOL settings. One area that shows a particularly large knowledge gap is the effect of ambient environmental aspects, such as temperature and ventilation, both of which are critical in maintaining patient comfort and health. The need for research on ventilation is acute because the risk of a patient contracting an infection from airborne pathogens is much more likely in the EOL population. The effectiveness of aromatherapy also requires more rigorous study to support claims of positive patient outcomes. And continued research is needed on practical environmental devices that can reduce delirium, a common EOL condition that often responds poorly to medications.
The use of an EOL facility’s environmental design to foster relationships between the facility and the surrounding community has been suggested, yet there is little research on the topic beyond opinion-based pieces nor are there details regarding the execution of such an endeavor. Similarly, experts recommend having visual artwork within healthcare facilities, but the exact effects of visual artwork on patients have been poorly studied. There is also little research on the best subjects to depict in such artwork.
This review has identified a host of studies indicating that the right physical environment may enhance the physical, psychological, social, and spiritual well-being of EOL patients. Future research is necessary to better understand the most appropriate environmental designs for EOL care and to evaluate environmental effects on care outcomes, as well as on patient, family, and caregiver experiences. The EOL experience is not a single condition with a universal response and course of care (109); it varies highly by person, disease, age, race, context, and culture. Therefore, it requires diverse solutions and responses (109). Future research is needed to provide specific adaptations to various conditions.
Conclusion
It is both difficult and costly to provide EOL care within the context of a national and global healthcare system that is focused on delivering cures and rehabilitation. The use of palliative EOL care as an alternative model could reduce the societal healthcare costs associated with the demographic reality of a growing elderly population. Yet providing effective palliative EOL care is not inexpensive, particularly with regard to care environments. As this integrative literature review clearly demonstrates, the environment needed for effective palliative EOL care is highly complex and therefore not without cost. When precious financial resources are directed at new construction or modification in institutional facilities or even private residences, guidance is needed to ensure that design decisions are appropriate and that the greatest possible benefit is realized from the expenditures.
With this systematic review, we aimed to address these issues. We used the theory of total well-being to guide a critical analysis and synthesis of the relevant medical research, design literature, and existing patterns. Five key environmental factors were identified and discussed: facilitated social interaction, positive distractions, privacy, a home-like and personalized atmosphere, and ambient environmental features. Moreover, this study offers direction for future research to fill in the knowledge gaps about design for this uniquely important setting. The findings generate a resource for all EOL care teams—including administrators, nurse leaders, nurses, and family caregivers—who seek to provide a suitable care environment and for design researchers who hope to have a lasting impact on the field.
Acknowledgments
Research reported in this publication was supported by the National Institute on Aging of the National Institutes of Health under Award Number P30AG022845. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health. The project also received support from the United States Department of Agriculture National Institute of Food and Agriculture's Federal Capacity Fund (Smith Lever) for outreach and cooperative extension of research in land grant universities, the Lawrence and Rebecca Stern Family Foundation through the Translational Research Institute for Pain in Later Life (TRIPLL), an Edward R. Roybal center (in the Bronfenbrenner Center for Translational Research), Cornell Institute for Healthy Futures and College of Human Ecology's Building Faculty Connections Program. The authors would like to thank the following individuals for their valuable contributions to this paper: Amy R. Slutzky of the SUNY Upstate Medical University and Sheila Danko, Chriss Cherny, Alberto Embriz De Salvatierra, Meg Elizabeth Taylor, Nancy Jiang, Monika and Marissa Patel, Grace Liu and Laura Bell at Cornell University.
Footnotes
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Contributor Information
Rana Sagha Zadeh, Assistant Professor, Design and Environmental Analysis, Cornell University, 1414 Martha Van Rensselaer Hall, Ithaca, NY, U.S.A 14853-4401, Tel: 607-255-1946, Fax: 607.255-0305, rzadeh@cornell.edu.
Paul Eshelman, Professor Emeritus, Design and Environmental Analysis, Cornell University, Ithaca, NY, U.S.A
Judith Setla, Associate Professor of Medicine, Voluntary Faculty, Dept of Medicine, SUNY Upstate Medical University, Syracuse, NY, U.S.A, Medical Director, The Hospice of Central New York, Liverpool, NY.
Laura Kennedy, Design & Environmental Analysis, Cornell University, Portland, OR, U.S.A
Emily Hon, BS, MD Candidate, New York Medical College, Valhalla, NY, U.S.A.
Aleksa Basara, B.A. Candidate, Department of Economics, Cornell University, Ithaca, NY, U.S.A.
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