Understanding and Managing Patient Fear in the Hospital Setting by Innovations2Solutions

Understanding and Managing Patient Fear in the Hospital Setting Darien Kadens, PhD, MBA, Director of Healthcare Research, Sodexo Lisa Herms, MSc, Research Analyst, Sodexo

Few regard being in the hospital as a pleasant experience. A hospital stay is usually associated with a dual burden — the unpleasantness of the condition causing the hospitalization, as well as the discomfort associated with the state of being in a hospital. Medical research and increasingly also patient engagement can help speed and alleviate the first issue. To mitigate the second concern, hospital staff and administrators can make valuable contributions.

It is therefore vital for a hospital to look toward enhancing patient experience in a hospital setting. This is partially shaped by accounting for the fears faced by patients in hospitals.

1. DEFINING PATIENT FEAR AND UNDERSTANDING ITS MANIFESTATION

Health care that is patient-centered is increasingly acknowledged as an essential foundation to improve not only patient satisfaction, but also safety and clinical outcomes. The Affordable Care Act (ACA) repeatedly refers to patient-centeredness, patient satisfaction, and patient experience in its provisions, and even when only the general term “quality measures” is referenced, patient-centered assessments are often implied1.

1.1 Sources of Patient Fear Most people experience a certain level of fear and discomfort in a hospital setting, with varying degrees of severity. This is shaped by either personal experience, the experience of family or friends, or sometimes simply media reporting, which most often reports on negative rather than positive outcomes.

In fact, patient experience is a key criterion of health care quality, next to patient safety and treatment effectiveness. Tools such as the HCAHPS (Hospital Consumer Assessment of Healthcare Providers and Systems) survey and the Press Ganey survey help to quantify and evaluate the provision of care from the patient perspective. With the advance of these measurement tools, effectively improving patientcentered care and focusing on patient feedback is no longer simply the right thing to do, but is becoming a business imperative. Both ranking — which helps to determine utilization — and service remuneration are often linked directly to patient feedback and outcomes. The public availability of hospitals’ performance scores has opened hospital care provision to the curiosity and scrutiny of health care consumers. The Centers for Medicare & Medicaid Services’ Hospital Inpatient Value-Based Purchasing (VBP) Program, which seeks to link the Medicare payment system to observable quality measures, explicitly relies on HCAHPS scores for adjusting payments based on a Total Performance Score (TPS). The TPS is currently comprised of the clinical process of care domain score (weighted as 20% of the TPS), the patient experience of care domain (weighted as 30% of the TPS), the outcome domain score (weighted as 30% of the TPS), and the efficiency domain score (weighted as 20% of the TPS). More and more private insurers also rely on patient experience information in setting their reimbursement levels.

Fear in the hospital setting can stem from several sources. In a review of academic literature and interviews with recent patients, results indicate that fear typically revolves around two aspects: a loss of control and depersonalization. A hospital is one of the few places where an individual essentially forfeits control over every task s(he) normally performs2,3,4. Restrictions on personal freedom, mobility and choice, coupled with perceived objectification from hospital staff, can lead to a feeling of shame and helplessness.

Fear typically revolves around two aspects: a loss of control and depersonalization. The Patient Empathy Project has identified the most common patient fears from a series of patient surveys covering 1,080 adults and spanning 3.5 years, displayed in Table 1 below5. These have also been reaffirmed and individually examined in other studies6,7,8,9,10,11, touched on in patient interviews, and can be seen in media coverage of hospital incidents.

Table 1 The Patient Empathy Project – Top Patient Fears 1.

Infection

Incompetence

Death

Cost

Medical Mix-Up

Needles

Rude Doctors and Nurses

Germs

Diagnosis/Prognosis

10.

Communication Issues

11.

Loneliness

Source: Patient Empathy Project5

Sometimes, patient fear is straightforward, such as a fear of needles or blood. However, most of the fears faced by patients are more fundamental. A primary concern is the fear of hospital infections and germs. In an interview with Sodexo, Jane, a new mother who recently underwent surgery and extensive chemotherapy for breast cancer, states that the fear of “getting sicker the longer you stay, because of secondary infection,” led her to leave the hospital very shortly after undergoing surgery. Jane believes that this fear was conveyed to her through media coverage as well as through her own doctors. As would be expected, there is significant fear of death and poor prognosis. This is heightened by a fear of incompetence and mix-ups. These can be medical mixups, such as foreign objects being left inside a patient during surgery or an IV port not being removed when it should be. Mix-ups can also be administrative, such as the confusion of patient records, or, as the example of a Calvary hospital shows12, a mix-up with respect to the timely delivery of appropriate food to patients with special dietary requirements. Hospitalization is associated with two-fold financial cost — the cost associated with a hospital treatment, as well as a cost in terms of foregone income that accompanies days of sickness. Particularly in the United States, where the medical bill of a hospitalization is often already unaffordable, patients may significantly fear these costs.

Communication, respect, courtesy, and empathy — or lack thereof — are other key issues. A hospital patient is in an institution whose bureaucratic structure is foreign to him or her; patients are subject to directives of various lines and levels of authority, which sometimes results in contradictory information and instructions from members of staff. This leaves the patient confused and afraid, with no means to determine which statements are correct. In another interview, John, a concerned father who had to take his daughter into the hospital on numerous occasions for seizure episodes, explained how a lack of communication propagated further anxiety. Unsure of what ailed his daughter, hospital staff ran tests with the sole explanation that “the doctor ordered it.” This lack of communication then led him to independent researching of medical terminology and tests, confusing and contradictory Internet findings, and hence even greater anxiety.

Patients deal with fear in different ways; some crave clarity and information while others focus on external distractions. isolation and boredom, stemming from significant restrictions placed on patients, safety and visitation regulations, and potential clinician-imposed immobility (i.e., confinement to a hospital bed). Yet, in Jane’s words, “it’s in that loneliness that fear comes in, because all you can do is worry.”

The last fear that the Patient Empathy Project points out, which is at the same time one of the most fundamental and pervasive, is the fear of loneliness. Facing an illness is an isolating experience in and of itself. John says that he felt isolated by his own design, because he “didn’t want others to worry about [his] state of mind,” and Jane states that isolation came from the mindset that “everybody is living their life… and then there’s you, who has cancer.” But in a hospital setting, this isolation is amplified. As she puts it, “being sick, you are already starting from a place of disconnect, and then the hospital setting perpetuates that.” Patients are left alone for much of their hospital stay. There is physical

1.2 Manifestation of Fears Not every individual will perceive the aforementioned fears in the same way. Severity will differ from case to case; some individuals will experience a few fears, while others may deal with all of them. Having established the main sources of fear in a hospital, one must look toward how patients themselves perceive these fears, and how the fears are manifested in patient attitudes and behaviors. Patients deal with fear in different ways; some crave clarity and information to overcome their fear while others focus on external distractions such as personal interests or social interactions.

“Being sick, you are already starting from a place of disconnect, and then the hospital setting perpetuates that.”

To formalize this, Sodexo has undertaken an in-depth study on patients, using exhaustive qualitative and quantitative research methods in both the USA and in France, and systematically applying factor analysis to segment patient attitudes. The resulting Behavioral Segmentation Tool — Personix™ Patients — has been used to identify 6 “families” of patients, with emphasis on the behaviors these patients exhibit to cope with the fear experienced during their hospital stay. The 6 families are described in greater detail below.

– Jane, mother and breast cancer survivor

6 Patient Families At any given moment in time in a hospital, Sodexo’s research hypothesizes that patients’ attitudes can be distributed according to these 6 clusters. These vary depending on whether or not individuals turn to an inner focus or reach out, as well as whether they deflect or tackle the fear they are facing.

Patients with a self-centric attitude do not frontally address the fears they are facing, but rather put them aside in an effort to concentrate on self-interest. These individuals try to singularize their hospital stay, making sure that they get what they want, in an attempt to regain some control over their situation.

Attention-seekers, similar to SelfCentrics, also do not confront their fears, but rather escape them through various distractions. They attempt to break through the depersonalization and standardized routines, trying to become the center of attention. Unlike the Self-Centrics, however, they seek out human interactions and emotional support.

Though still deflecting rather than tackling fear, minglers do so very proactively by reaching out to others and fostering social contact. Whereas attention-seekers want hospital staff to merely listen, minglers are looking to go a step further and bond, through mutual interaction.

Acceptors keep their fear under control through ensuring that they are correctly informed of their status and progress at all times. Oftentimes, they try to actively engage in their healing process and adhere by rules and guidelines, trusting that “doctor knows best.”

Worriers do not manage their fear as directly as acceptors, and require significantly more support and continuous reassurance. They rely on rational explanations, coaxing and regular checkups to trigger the recollection process, reassure them of their progress, and bring stability.

Loners withdraw from their surroundings and value their loneliness and privacy. Out of fear, these individuals isolate themselves, which in turn is again a source of fear. Isolation and fear amplify one another, and the loner endures through mere resignation or sometimes depression.

Though at any point in time most patients fall into one of these 6 clusters, they are not permanent. Patient attitudes can change throughout the hospital stay, following certain milestones or as a result of specific experiences.

1.3 Consequences of Patient Fear

be that intrusive parent who came across as pushy or obnoxious. I didn’t want to jeopardize anything for her. I guess I felt retaliation could come in some way.”

Fear, though a natural response, is generally acknowledged to be a negative and undesirable phenomenon. In the hospital setting, fear can be particularly detrimental for successful treatment and recovery, producing cognitive, physiological, behavioral and affective reactions that can severely hinder a speedy and safe recovery, regardless of the particular fear source or an individual’s attitude cluster.

Other patients turn into “bad patients” — those who exhibit anger in light of the seemingly arbitrary exercise of control by the hospital. Such a negative attitude can in turn have adverse effects on relations with hospital staff, who may be confronted with disappointment, anger, hatred, or even violence at times. Not only can this hinder the effective provision of appropriate care, but it can also negatively impact staff motivation, which affects quality of care as well as sustainability of the hospital as a company.

A primary consequence of fear is that it can make the treatment experience worse than it truly is. This form of catastrophizing has been suggested and tested by several studies3,13,14,15,16,17. If patients are not given enough information about their condition and communication is lacking, they may experience the discomfort of the hospital stay and treatment more intensely, which manifests itself in heightened adverse physiological responses and reduced powers of concentration. For example, the white coat syndrome is a commonly acknowledged phenomenon whereby patients exhibit a blood pressure level above their normal range18. This syndrome is not only dangerous, but it also may produce inaccurate measures of vital signs, which are necessary for determining treatment path and dosage. Another adverse effect of extreme cases of fear is refusal to seek treatment, even when highly needed. For example, a fear of hospital superbugs and infections in the United Kingdom has kept people out of the hospital who otherwise needed treatment11. In another example, fear of isolation may also prevent some people from seeking treatment, such as in the case of antibiotic resistance19 or in the choice between home- and hospital-centered terminal care20,21.

2. RESOLVING PATIENT FEAR To help prepare patients for fear in hospitals, and potentially allay their concerns, there is significant scope for contribution by hospital staff and providers in the community. The underlying aim of most attempts to resolve patient fear is to combat communication issues and loneliness — the key drivers of fear. Three main areas are vital starting points: staff awareness, patient involvement, and social support.

Staff awareness, patient involvement, and social support are essential for overcoming patient fear.

Fear also has consequences in terms of how it shapes and influences the interaction between patients and hospital staff. Some patients become what Taylor3 describes as “good patients;” namely, those who are passive and compliant. What this passivity may mean, however, is that patients are in a state of depressed or anxious helplessness22,23. This has physiological as well as sociological consequences. Reports have shown that fear can “paralyze” patients to the point when they stop speaking up and do not voice their complaints to the staff, even for minor aspects of their care, out of fear of reprimand or being seen as burdensome24. John illustrates this point very well when talking about his interaction with his daughter’s doctors: “I didn’t want to

To help alleviate patient fears, staff and administration awareness about these fears is extremely important25. Despite the fact that patient fears are intuitively easy to understand, some studies have shown that these fears are not always perceived by hospital staff. For example, Heikkila et al. found that there was a significant incongruence between perception of fear by patients and nurse awareness thereof26. This finding suggests that it is important to further examine the sources of patient fears and, perhaps even more importantly, to spread this knowledge throughout the hospital staff, to avoid stereotypical views of patient fears, subconscious belittling of patients, or even unintentional reinforcement of certain fears.

Patient involvement and communication are also key areas where improvements can be made. Physicians and staff members may not appreciate the necessity of creating a safe environment for open communication, one which facilitates shared decision-making22,27. Giving information may be seen as something that is unnecessary, would simply confuse the patients even more, might cause an (emotional) reaction that could hinder proper care provision, or at the very least is simply time-consuming. Yet self-care, pre-operative preparation, feelings of control, the setting of appropriate expectations, and a belief that one can affect one’s own condition can lead to better physical and psychological states, offsetting many of the pernicious side effects that the traditional loss of control and depersonalization create. Social support refers not only to the extent to which friends and family members are allowed to participate and be on site for the patient, but also to other forms of indirect support, such as through entertainment offers, relaxation facilities and various amenities designed to bring comfort. These three areas can be targeted in all stages and aspects of a hospital stay. Actual implementation and solutions to how fear can be alleviated through these must be shaped and individualized to specific patient needs and behavior groups, though some general statements are possible.

KEY AREAS FOR IMPROVEMENT TO ALLEVIATE PATIENT FEAR IN HOSPITALS I M P R O V E S TA F F A W A R E N E S S , PAT I E N T I N V O LV E M E N T & S O C I A L S U P P O R T ARRIVAL PROCEDURES

DURING THE HOSPITAL STAY: AMENITIES & SERVICES

POST-DISCHARGE COMMUNICATION AND SUPPORT

Physical Environment Pre-Admission Communication

Food Services

Follow-up Appointments and Care

Media & Entertainment Check-In Practices

Relaxation & Support

Transportation, Home Maintenance, and Support during Recovery

Family & Visitors

The arrival and discharge processes and facilities must become more humanizing. As patients are either entering or leaving this new and unique institution of the hospital, they require some form of buffer zone to allow a smooth and coherent transition. Right from the beginning, communication between staff and administration must be open, direct and friendly. For example, the Memorial Hospital and Health System in South Bend, Indiana, has adopted “check boxes” of fears in the EMR, which allow staff to record and follow up on a specific patient’s fears by pointing them to the appropriate resources. Along the same lines, acknowledging some of the most common patient fears, Memorial Hospital also banned the practice of saying “good luck” to patients. Furthermore, staff members were asked to no longer assume that every

patient wants a private room but to explicitly ask for preference for a private or shared room — allowing the patient to balance privacy against companionship and make an independent decision. Evidence from The Patient Empathy Project suggests that these measures had a positive impact on the hospital’s HCAHPS Score and hence (by inference) patient experience28.

of take-out menus or benefit from 24/7 service. Others find comfort in knowing that their families left behind at home are being provided with meals during their stay. Meals can also be an opportunity for social interaction, with trays that are in easily transportable formats or the possibility to have guest trays for visitors and family at no or little extra charge. To enhance communication and patient awareness of their care, nutritional information can be showcased alongside any meals, including information that highlights the beneficial aspects of the delivered food and how this contributes to the patient healing process.

Some suggest that hospitals should take a more concierge-type approach to the hospital stay, focusing on the delivery of services beyond just health care. Throughout hospitalization, it is vital to maintain patient choice wherever possible, encourage constant and open communication with staff, and provide opportunities for social interactions when needed. Above all, there is a need to allow people to create comfort in their own way.

To combat isolation and loneliness, media and entertainment services are also invaluable tools. Additionally, opportunities for social support from sources other than family and friends can help alleviate fear, such as multi-professional counseling, support from nurses, patient navigators, or a pre-operative support group. Studies have found that when the amount of social support is high, patients experience lower levels of anxiety and fear9,23,25,29.

One element where improvements can be made is in the physical environment, and particularly the cleaning of the patients’ surroundings. To combat patient fear of infection and germs, it is important to have a visibly clean environment, while acknowledging that patient perceptions of cleanliness may differ from that of hospital staff. Regular and noticeable cleaning and disinfecting, including sites that might not be typically thought of (i.e., alarm buzzers, patient consoles, pillows, bed frames, bedside lockers, door handles) can alleviate patient fears. The same is true for frequent staff hand washing before and after patient contact. These steps can be further supported through public reporting of hospital cleanliness data. Patients can use these objective measures — when they are presented appropriately — and reconcile them with the hospital staff behavior they observe during their stay. Patients should also be allowed to actively contribute to the cleanliness and orderliness of their hospital environments. Hand hygiene products should be within easy reach, and patients should be given assistance (if needed) to clean their hands. Other aspects to consider include the possibility for patients to influence the scheduling of their cleaning, the color of their sheets/ towels, and the scent of the cleaning supplies to be used in their rooms.

Nevertheless, visitation by friends and family remains one of the arguably most important aspects of a hospital stay, and this support can be a powerful way to alleviate fear. Making visitation easier, more flexible and more frequent can greatly contribute to patient peace of mind and anxiety. Some suggest accommodation or food offers be made available for a few key visitors, to ensure continuous companionship and support from loved ones through major stages. Health care delivery does not end when the patient leaves the hospital, but rather continues post-discharge. Furthermore, psychological research has shown that the “ending” of an experience — here a hospital stay — can have significant impact on the remembered experience and retrospective evaluation of the care received. It is therefore vital to ensure that throughout the discharge and post-discharge processes, patient fears that may have been mitigated successfully through various means during the stay do not come back. To do this, patients need clear instructions about next steps and, if possible, the possibility to commit to the next follow-up appointment right away. Contact information in case of future questions and anxieties should be made available, either in terms of contact information for medical staff or patient and survivor support groups. Some patients may also benefit from a comfort pack, a schedule or

Another key aspect that can serve as a source of either anxiety or comfort to patients is the food services offered during a hospital stay. In attempts to “bring back a sense of normal,” as Jane puts it, some patients might appreciate the option to order from a selection

meal plan, or transportation and home maintenance to help them adjust and return to their normal life. Tidelands Health in South Carolina was able to reduce hospital readmissions by 40% in less than six months and improve patient experience and loyalty scores by using a concierge-style approach to post-discharge follow-up and support for patients30. All of these solutions must be tailored to specific patients, based on which behavior group they classify as at any point in time, and also to the particular stage and timing each patient is in. Different patients need different forms of support at different points in time. An all-round concierge service that takes care of patients’ non-clinical needs can help to alleviate fear and has been shown to improve patient experience and increase HCAPHS scores.

SUMMARY To truly understand and manage patient fear in the hospital setting, one must acknowledge several aspects of this fear. As a first step, one must identify the sources of patient fears, which are multiple and varied. Arguably more vital to managing patient fear, however, is understanding how fear is perceived by patients — how fear manifests itself in patient attitudes. Sodexo’s Personix™ tool has enabled the clustering of patient attitudes into six categories, ordered in a matrix along two scales. While no individual can be entirely assigned to one of these clusters for the duration of their hospital stay, acknowledging the presence of these different attitudinal groups can be a good starting point for understanding the patient behaviors observed. Patient fear is widely recognized to be negative — if not managed properly, it can hinder effective healing, result in an unnecessarily poorly perceived experience, and have negative impacts on hospital staff. These outcomes are vital, and emphasis on patient experience and patient-centered care will only continue to grow; thus, hospital staff must look toward mitigating and alleviating patient fears. In doing so, hospitals must target solutions not only toward specific fear sources, but also at different patient attitudes, to ensure that there are no unintended consequences that could heighten any adverse phenomena or anxiety.

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Personal Interviews with Jane and John (Names are anonymized).