continuing the journey of alleviating patient fear: post-discharge

Continuing The Journey Of Alleviating Patient Fear: Post-DischargeDarien Kadens, PhD, MBA, Director of Healthcare Research, Sodexo

Lisa Herms, MSc, Research Analyst, Sodexo

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The information and concepts contained in this document are the proprietary property of Sodexo. As such, they cannot be reproduced or utilized without permission. ©2016

THE ACA READMISSIONS REDUCTIONS PROGRAM, PATIENT-CENTERED CARE AND POST-DISCHARGE PROCEDURESAcross the globe, there has been an increasing trend toward a focus on value in the healthcare sector. Consequently, many governments have implemented regulations that extend hospital responsibility beyond mere treatment and reprimand for unnecessary patient readmissions. In the United States, the Hospital Readmissions Reduction Program, established by the Affordable Care Act (ACA), penalizes hospitals for patients who are readmitted within 30 days of discharge by a reduction in Medicare payment up to 3%. In 2015, roughly half of U.S. hospitals were penalized under the regulation, altogether losing an estimated $420 million.1

Readmission can be linked to a problem inadequately resolved during hospitalization (i.e., a hospital-acquired infection, unstable heart functioning). However, it can also be caused by a deterioration after a patient has been discharged, such as due to inadequate – or misunderstood – management of a patient’s condition on their own. Interventions to reduce readmissions have therefore historically focused both on inpatient care as well as the transition to outpatient and home care.2

Post-discharge care is, in fact, a key pillar of patient-centered care. Transition and Continuity – both post-discharge themes that can be linked to readmissions – are part of the 8 Picker principles of patient-centered care.3 In addition, the HCAHPS questionnaire – another element of the ACA that is linked to reimbursement – includes two major items that focus specifically on post-discharge: whether or not patients were given information about what to do about their recovery at home, and whether or not patients understood their care when they left the hospital.

This piece will examine the critical role of post-discharge care and how it is shaped by the existence and alleviation of patient fear. Steps and best practices to alleviate this fear are also described in detail.

POST-DISCHARGE AS THE NEXT STEP IN THE JOURNEYCare does not stop when a patient leaves the hospital. For the patient, the journey to recovery is not completed once the patient is wheeled out of the facility, but only just beginning. However, the general sentiment among the patient population is often that following their discharge, they are on their own, thrown back into everyday life as if nothing has happened. With the immediate threat of illness or fatality resolved, the reality of everyday life post-hospitalization is daunting, augmented by potential stigmatization, isolation, and a large amount of catch-up work required for things left undone while away. All of these contribute to a feeling of being overwhelmed, thereby leading to anxiety and, more fundamentally, fear among post-discharge patients. This fear, if left unacknowledged, can have severe implications for readmissions and patient outcomes, thereby impacting providers’ financial sustainability as well as patient and caregiver quality of life.

Therefore, it is vital that healthcare providers begin to focus on the post-discharge period and the transition to out-of-hospital care as a key milestone – rather than the finish line – in a patient’s recovery path. To examine this from the most fundamental perspective, providers ought to consider the underlying feature that has already been the guiding principle of patient in-hospital care: the understanding and alleviation of fear.

Post-discharge care is a key pillar of patient-centered care.

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SOURCES OF PATIENT FEAR POST-DISCHARGEThe transition from the hospital back to normal life is defined by attempts to regain control after the depersonalization and loss of control experienced by a patient during the hospital stay.4 A hospital is one of the few places where an individual essentially forfeits control over every task (s)he normally performs.5,6,7 Patients are monitored 24 hours a day, and their daily routine is prescribed to them. Even with the best and most patient-centered inpatient care, a patient still loses autonomy and the ability to make individual decisions.

In the search to regain this autonomy after discharge, there are many psychosocial sources of fear a patient encounters. Based on academic studies, first-hand interviews, and reviews of patient support groups and social media, one can identify several key sources of fears (Figure 1). Many are universal, while some are more prevalent in certain subgroups of patients.

Fear of Being a Burden

Fear of Needing (and Being Unable to Adapt)

Fear of Remission, Recurrence & Complications

Fear of Doing Something Wrong

Fear of Pain

Fear of Stigmatization

Fear of Falling

For patients, the transition from the hospital back to normal life is defined by attempts to regain control.

Figure 1. Common Sources of Patient Fear Post-Discharge

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One of the most fundamental fears repeatedly mentioned throughout is the fear of remission, recurrence and complications.4,8,9,10 This fear is so severe and prevalent that patients and those who care for them have coined a name for this phenomenon: living under the sword of Damocles.11 It is especially prominent for cancer survivors. In fact, recent systematic reviews of academic literature suggest that around 50% of all cancer patients experience moderate to severe fear of remission.12

Combined with a fear of recurrence, patients are afraid that failure on their part to complete a required task – from caring for their wounds to following any other instructions – will have significant consequences. The fear of doing something wrong can stem from confusion about post-discharge instructions and insecurity about what is and is not “normal” for certain ailments.

Depending on the illness or procedure, patients may be afraid of facing significant pain after discharge. This is augmented by the perception that once patients leave the hospital vicinity, they no longer have ready access to proper pain mediation dosages, leaving their pain either undermanaged or overly managed with excessive self-medication.13,14,15,16

Some patient groups experience a fear of stigmatization when they return to their community. In the words of one cancer survivor, “Everyone is living their life…and then there’s you, who had cancer.” Sometimes hospitalization leaves behind visible signs – scars, hair loss, bandages or walking aids – all of which make it obvious to the community that a patient has received treatment. Despite the increase in public awareness about many health conditions, many people still see illness as something to be ashamed of – something for which others will blame and stigmatize them. Even if stigmatization is only felt, as opposed to enacted, a patient may experience this fear.17,18,19

For physically debilitating illnesses or incidents, patients – especially the elderly – often cope with a fear of falling down.20,21,22 For many, a fall would be symbolic of losing autonomy again, and would potentially lead to a relapse or readmission to the hospital.

Lastly, a fundamental fear of discharged patients is the fear of needing to adapt to a new lifestyle and an inability to do so,9,23 coupled with the fear of being a

burden to those around them.24 Rarely can a patient “jump right back into” the life they lived before. At the very least, temporary adjustments will be required; from physical limitations as wounds heal, or due to new routines, diet restrictions, certain medications, or wound treatment procedures.

In this struggle for adaptation, patients may view themselves as burdens. Patients may fear being a burden in the long-term, especially when they are discharged and diagnosed with a chronic illness that will require further and continuous treatments. Even patients with short-term physical limitations may fear being a burden. Interestingly, this particular fear seems to be ungrounded – or at least not as severe as patients imagine. Studies show that patient estimates of the burden experienced by their caregiver are higher than the caregiver’s own perception of their burden.25

IMPLICATIONS OF PATIENT FEAR POST-DISCHARGEPatients experience different fears with varying severity, depending on their condition, the experience they had during the hospital, and their existing support network outside of the hospital. These factors also influence a patient’s fear-coping mechanisms after discharge, and the resulting consequences.

Patient Fear-Coping Mechanisms

Fear is universal, but the way we manage it is not. Just as we have previously identified patient fear-coping mechanisms during a hospital stay,26 so can we expand this notion to how patients will react to the fear they face once they leave the hospital. A patient does not stop being a patient just because they leave the confines of the hospital bed.

Sodexo’s proprietary behavioral segmentation tool, PersonixTM, systematically applies factor analysis to segment patients into one of six fear-coping mechanisms (Figure 2). While originally designed to explain the behavior observed inside the hospital, there is reason to believe that these coping mechanisms are also transferred to the recovery phase, including when individuals return from the hospital.

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Self-centrics individualize their treatment and recovery path by focusing on what they want and how they want to approach the

transition. They look to manage everything individually and to their own liking.

Minglers seek support from anyone who will listen – whether hospital staff, friends and family, community members, or fellow

patients or survivors.

Worriers rely on continuous explanations, coaxing, and reassurances about their state

and progress.

Attention-seekers continuously have questions about their care and will not be shy about asking around, in an attempt to

stand out as a patient or survivor.

Acceptors controlled their fear in the hospital by following well-defined treatment plans. Accordingly, in the transition phase and post-discharge, they continue to look

for guidelines, schedules and instructions for the proper steps forward.

Loners seek to remain isolated in the hospital, and they will continue to shy away from human contact post-discharge – whether it is with follow-up clinical staff,

friends and family, or patient/community support offers.

At any given point in time, patients may fall into one or more of these six clusters. The coping mechanisms exhibited by each individual have implications for the consequences of fear post-discharge; a better understanding of this can ultimately serve as a starting point for initiatives to alleviate fear.

Figure 2. PersonixTM Patient Fear-Coping Mechanisms

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CONSEQUENCES OF PATIENT FEAR POST-DISCHARGEFear is clearly an undesirable phenomenon – for any individual, but especially for patients who have undergone a period of intense physical and emotional stress. Fear can lead to adverse physical reactions that can hinder or inhibit successful recovery. In addition, when coupled with confusion and incomplete medication, fear can lead to medication misuse and missed warning signs.

Improper Use of Pain MedicationResearch has found that in cases when significant pain and the extensive use of pain medication were key factors during a patient’s stay, a patient may continue to take opioids post-discharge. Yet, this may not be advisable. In very extreme cases, fear of pain and confusion about medical consequences can result in some form of opioid addiction.13,27 Alternatively, a fear of addiction to painkillers may prevent individuals from taking medication when, in fact, they should.28

Overutilization of Emergency RoomFear can also lead patients to over-interpret certain signs and signals, resulting in unnecessary readmissions and emergency room visits. Many patients are concerned that their primary care physician or caregiver don’t have the means to treat them properly, only to find out after visiting the ER and being readmitted that most of their concerns could have easily been managed outside of the hospital setting. Other times, patients are concerned about long wait times or appointments that are spread out over time, worried that they require or would benefit from immediate treatment. While some patients do require immediate medical assistance, blind fear post-discharge should not be the primary driver behind future emergency room visits.

Reluctance to Attend Follow-up and Post-discharge CareAnother angle to consider in discussing the consequences of patient fear after hospitalization comes from behavioral economics. Studies have identified what is known as the “peak-end rule.” According to the peak-end rule, people judge an experience based largely on how they felt at its “peak” – the most intense point in time – and at its end, rather than based on the total sum or perceived average of the entire experience.29,30 In terms of medical treatment, this means that in looking back at the care they received in the hospital, patients will focus on the most intense moments – likely of pain and fear – as well as the last impression they had of the care they received – likely the discharge procedure. If either one of these is intensely painful or induces fear, the patient may remember the entire hospital episode as being intensely painful or fear-inducing.

In terms of follow-up and post-discharge care, this means that patients may be more hesitant to return to the hospital. They may ignore certain warning signs, miss vital follow-up visits with their physicians, and abstain from future prevention procedures. This can jeopardize a speedy and safe recovery outside of the hospital. Empirical examples have focused on preventive procedures such as mammograms, colonoscopies, or dentist visits.31,32,33,34 But other studies have examined hospital visits, showing that memory of pain and recall of the hospital episode – whether they are accurate or not – are valid predictors of patient stress and anxiety post-discharge.35

Patient fear can lead to medication misuse and missed warning signs.

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Mental Peace of Mind and Health IssuesLastly, the presence of fear post-discharge can have severe consequences for a patient’s mental health. The feeling of being helpless and alone after being released from a hospital where a patient receives 24-hour assistance and supervision can lead to depression.

There are many facets to patient fear post-discharge, and the consequences and severity of fear clearly vary from individual to individual. However, the common thread beneath these diverse implications is that all of them may lead to some form of hospital readmission – likely in an emergency situation. Given the limited resources of the healthcare system, healthcare professionals must focus on and combat fear as one of the most fundamental drivers of hospital visits post-discharge (aside from medical necessities).

ALLEVIATING PATIENT FEAR AFTER HOSPITALIZATIONRegardless of the specific fear-coping mechanism an individual exemplifies, the key solution in alleviating patient fear after release from a hospital revolves around providing information and support. The underlying reason fear is experienced post-discharge is an attempt by the patient to regain control and sense of self, which is usually met with some hurdles. As a result, initiatives that seek to alleviate fear should focus on guiding and empowering patients.

With this as a guiding framework, there are three key interconnected aspects of post-discharge fear alleviation: providing information, easing the transition, and continuously supporting (Figure 3).

Guiding and empowering patients is key to alleviating their fear.

Figure 3. Steps to Alleviate Patient Fear Post-Discharge

Figure 3.

PROVIDE INFORMATION EASE THE TRANSITION CONTINUOUSLY SUPPORT

Discharge Procedure

Bu�er Lounge

Medical Discharge Summaries

Patient Discharge Instructions

Technology to Support

Medical Sta� Contact Information

Comfort/Supply Pack

Support from Sta�

Support from Fellow Patients

Support from Family & Caregivers

Support from the CommunityHome Transport

Concierge Service

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Step 1: Provide InformationA primary aspect of easing patient fear post-discharge that is most frequently found in the research is the need to provide information.36

Every hospital stay is chronicled in a final discharge document that is issued to the patient, either proactively or upon request. Obviously, there are many benefits to making this document readily available to patients. In theory, this transparency will help the patient to make healthier and more informed decisions about their activities and care. There is the ethical argument that a patient ought to have access to information about them. And then there is the practical benefit that this document can be utilized by a patient’s primary care physician and caregivers as a resource.

However, the idea of relying on this document as a patient’s primary source of information has met with some resistance. Physicians worry that patients would be unable to comprehend their notes, leading to more questions than answers. A resulting “dumbed-down” document that eliminates medical jargon would displace the primary role of the document as an instruction sheet for the primary care physician and future medical visits. Furthermore, these documents may not be comprehensive enough to give patients all the information they need.

A review of studies on this subject found major flaws in the discharge summaries. Often, these documents lacked key information, including a patient’s main diagnosis or a list of medications to take post-discharge. Summaries were found to be either too lengthy and often redundant, or overly brief and unspecific. The issue of promptness adds to the problem. Oftentimes, discharge summaries did not reach the outpatient doctors or patients in time – or at all – for the follow-up visit and immediate support post-discharge.37 While the timeliness of the documents may be improved through incentives from insurers, a push for speed and quantity may be detrimental to the quality of the writing.

The research clearly indicates the need to better target patient needs, and provide them with more detailed information about everything from medications to wound dressings and side effects. Any document targeting the patient, however, must be easily understandable – void of medical jargon and extremely user-friendly. Ideally, the document should utilize images and pictures, to make it comprehensible to non-native speakers or those with poor literacy. One approach has been to utilize technology as a means to create a dialogue throughout the patient’s hospital experience and during their recovery at home.38,39

Lastly, it is vitally important that patients feel that they are still connected to their healthcare provider, even when they are no longer within the walls of the hospital. As part of the communication- and information-sharing initiative, providing them with instructions on how to contact their physician and medical personnel can provide a sense of comfort and connection.

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Step 2: Ease the TransitionMost research focuses on the role of information in alleviating patient anxiety. However, providing information may not be enough. The healthcare profession must consider the post-discharge period as a process and journey requiring more comprehensive support.

The initial post-discharge period for a patient is a time of transition and adaptation. This uncertainty is met with fear and all the potential negative consequences described above. A key role for a healthcare organization is therefore to help to ease the transition during and immediately after the discharge procedure. This support can help make the shift from everything being taken care of to being entirely on their own less drastic for patients.

Easing the transition can encompass many elements:

§ A key factor, of course, is the actual discharge procedure. Giving patients the immediate opportunity to schedule their next appointments and follow-up visits has shown to significantly improve adherence and ease anxiety for certain subgroups.40

§ Patients may benefit from some form of buffer zone or discharge lounge between their hospital room and the hospital door, which allows them to gather their strength and mentally prepare themselves for the next stage.

§ Patients can be equipped with a comfort or supply pack that goes beyond the medical discharge papers – cosmetic or sanitary equipment, wound dressings/first aid materials, snacks or the local news to bring them up-to-speed with their community happenings.

§ A home transport service can provide a more gradual departure from the hospital setting. Patients are brought home in comfort and can even have professional assistance onboard to help ease any tensions and answer questions.

§ In the first few days back home after a hospital stay, patients may benefit from concierge-style services. These could range from arranging lawn mowing, house cleaning, or home grocery deliveries, to equipping a patient with a meal service to help them get through the first few days at home.

While it may not be feasible to provide all of the services and amenities listed above, any attempt to comfort patients or alleviate their stress will be impactful as they transition back to their home environment.

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Step 3: Provide Continuous Follow-up and SupportThroughout this transition phase and beyond, healthcare professionals must be sure to provide continuous support and follow-up to patients, even beyond the immediate recovery period.

Support from staff: This support can include follow-up calls with healthcare staff to ensure that, after leaving the hospital, patients are still comfortable with their medications and tasks they need to care for themselves. This “check on me” service with a phone call and a dedicated contact person for continuity of support can be targeted at medical inquiries and reassurances, or it can simply be a source of connection for casual check-ins and reassurance. After implementing a discharge program that included a follow-up phone call post-discharge, one hospital saw readmission rates drop by 40% in less than six months. This follow-up support ensured that patients understood and could meet their post-hospital orders for optimal recovery.41

Support from fellow patients: The importance of patient support groups cannot be understated, whether organized privately, by a hospital, or in the community. Patient survivors often welcome the opportunity to connect with others who have gone through the same experience; these relationships are distinct from the top-down interactions they have with medical personnel. Joining a virtual forum or an in-person patient group can serve as a source of information and connection.23 Studies suggest that standardized information for patients is inadequate – receiving peer support from lay people with similar experiences may be more valuable.8

Support from family and caregivers: Family members and informal caregivers play a vital role in combating patient fear. Relatives and informal caregivers are often the link between medical personnel and the patients themselves – the key to making patients feel safe.42 Healthcare professionals can therefore support patients by supporting their caregivers as well. Providing better support, coaching, and training to caregivers can reassure patients that they are in good hands and not an overwhelming burden to their loved ones.

Support from the community: Community support plays an important role in the discharge process, especially for patients who require ongoing non-acute care. There is a

broad array of community service providers and agencies to make sure the patient has the tools and support they need to succeed. However, these organizations must work collaboratively with hospitals – across the hospital–community interface – to effectively discharge patients and word toward alleviating post-discharge fear.

CONCLUSIONFear is a fundamental reaction in times of uncertainty and is at the heart of an episode of illness. A patient’s entire hospital stay is shaped by the perception of fear, and this fear does not dissipate once he or she returns home. While the sources of post-discharge fear and the severity of consequences differ from patient to patient, the detrimental effects of this fear on successful recovery remain an ever-present threat.

Providing patients with appropriate information is necessary, but alone is not sufficient enough to fully alleviate fear. Healthcare providers must also help ease a patient’s transition back to everyday life and provide continuous access to support from informed stakeholders – whether medical staff, patient survivor groups, or informal caregivers.

If these steps for addressing patient fear can be formalized and successfully implemented, readmission rates will drop, HCAHPS scores will rise, and patients will recover more quickly. This can only occur, however, if providers and healthcare professionals remember that a patient does not stop being a patient – and fear does not stop existing – simply because of hospital discharge.

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The authors also utilized Web scans of patient support forums, which will not be disclosed here to preserve anonymity. The authors also conducted primary interviews with discharged patients, whose names will also not be disclosed.