JONA Volume 44, Number 10, pp 517-524 Copyright B 2014 Wolters Kluwer Health | Lippincott Williams & Wilkins
THE JOURNAL OF NURSING ADMINISTRATION
Reducing Patient Suffering Through Compassionate Connected Care Christina Dempsey, MSN, MBA, RN, CNOR, CENP Sharyl Wojciechowski, MA
Elizabeth McConville, BSN, RN, CPHQ Maxwell Drain, MA, CPHQ
Patient experience continues to play an increasingly critical role in quality outcomes and reimbursement. Nurse executives are tasked with helping direct-care nurses connect with patients to improve care experiences. Connecting with patients in compassionate ways to alleviate inherent patient suffering and prevent avoidable suffering is key to improving the patient experience. The Compassionate Connected Care framework identifies strategies for meeting the challenges of connecting with patients and reducing suffering. Methods integrate clinical, operational, cultural, and behavioral aspects of care to target patient needs based on condition. Caregivers learn to better express empathy and compassion to patients, and nurse leaders are better equipped to engage nurses at the bedside.
that compassion is missing from the US healthcare system despite broad agreement that it is important for successful medical treatment. This highlights nursing concerns with compassion fatigue often related to organizational structure and culture. Caregivers must recognize that many patients are unprepared for the life changes brought on by disease and trauma and lack the knowledge necessary to deal with these changes. To reduce suffering, nurses and physician colleagues must engineer approaches that incorporate nurse empowerment and holistic, compassionate care. All patients can experience suffering, not just those with serious or life-threatening diseases. Improving the patient experience extends beyond symptom management in acute, chronic, or late-stage disease3 to encompass the clinical, operational, cultural, and behavioral aspects of care that define the patient experience in every setting.4,5 Patient experience is influenced by the clinical care of the patient, the operations of the organization, the culture of the care teams, and the behaviors of every person in the organization interacting with the patient (Table 1).
Suffer (v.): to undergo or feel pain or distress.1 For all caregivers, awareness of suffering in others invokes a call to action. The most obvious response is to mitigate the unavoidable discomforts associated with a specific disease or trauma: physical pain, nausea, fatigue, and various other physical symptoms. Patients present with symptoms, but they also sacrifice privacy and control over most aspects of their lives when entrusting themselves to another’s care. In response to that trust are empathy and understanding. In a 2010 survey,2 close to half of patients and physicians said Author Affiliations: Chief Nursing Officer (Ms Dempsey), Patient Experience Knowledge Manager (Ms Wojciechowski), Clinical Quality Knowledge Manager (Ms McConville), and Director, Knowledge Management (Mr Drain), Press Ganey Associates, Inc, South Bend, Indiana. The authors declare no conflicts of interest. Correspondence: Ms Dempsey, Press Ganey Associates, Inc, 5277 S Whitmore Ave, Springfield, MO 65810 ([email protected]). Supplemental digital content is available for this article. Direct URL citations appear in the printed text and are provided in the HTML and PDF versions of this article on the journal’s Web site (www.jonajournal.com). DOI: 10.1097/NNA.0000000000000110
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Patient Suffering The goal of patient-centered care is to treat a patient’s illness and to prevent or treat the symptoms, adverse effects, and suffering associated with the illness and treatment.6 Whereas certain aspects of patient suffering are inherent to any healthcare experience, others are clearly preventable7,8: the inherent suffering that the diagnosed condi-
tion brings to a medical experience (eg, a disease may create symptoms and reduced functioning) the inherent suffering that occurs as part of receiving medical treatment (eg, treatment may be uncomfortable, have adverse effects, and disrupt one’s life)
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Table 1. Correlations Between HCAHPS and Press Ganey Inpatient Survey Items and HCAHPS ‘‘Recommend This Hospital’’ Item Survey Press Ganey Press Ganey Press Ganey Press Ganey Press Ganey Press Ganey Press Ganey Press Ganey Press Ganey Press Ganey Press Ganey Press Ganey Press Ganey Press Ganey Press Ganey Press Ganey Press Ganey HCAHPS Press Ganey Press Ganey Press Ganey HCAHPS Press Ganey Press Ganey Press Ganey HCAHPS Press Ganey Press Ganey Press Ganey Press Ganey HCAHPS HCAHPS Press Ganey Press Ganey HCAHPS Press Ganey Press Ganey HCAHPS HCAHPS HCAHPS Press Ganey Press Ganey Press Ganey HCAHPS HCAHPS HCAHPS HCAHPS HCAHPS HCAHPS Press Ganey HCAHPS Press Ganey
Correlation Coefficient (r)a
Abbreviated Item Staff worked together care for you How well your pain was controlled Staff include decisions re: trtmnt Explanations: happen during T&T Response concerns/complaints Staff addressed emotional needs Nurses kept you informed Staff attitude toward visitors Staff concern for your privacy Skill of the nurses Nurses’ attitude toward requests Attention to special/personal needs Skill of physician Friendliness/courtesy of the nurses Instructions care at home Speed of admission Courtesy of person admitting Staff do everything help with pain Courtesy of person started IV Wait time for test or treatments Friendliness/courtesy of physician Nurses expl in way you understand Extent felt ready discharge Physician concern questions/worries Room cleanliness Nurses listen carefully to you Promptness response to call Physician kept you informed Courtesy of person took blood Room temperature Nurses treat with courtesy/respect Pain well controlled Pleasantness of room decor Courtesy of person cleaning room Tell you what new medicine was for Time physician spent with you Accommodations and comfort visitors Doctors treat with courtesy/respect Doctors expl in way you understand Doctors listen carefully to you Courtesy of person served food Speed of discharge process Noise level in and around room Help toileting soon as you wanted Call button help soon as wanted it Info re symptoms/prob to look for Staff describe medicine adverse effect Staff talk about help when you left Room and bathroom kept clean Temperature of the food Area around room quiet at night Quality of the food
0.84 0.81 0.81 0.81 0.80 0.80 0.80 0.79 0.78 0.78 0.78 0.78 0.77 0.77 0.76 0.75 0.75 0.75 0.74 0.74 0.74 0.73 0.73 0.73 0.72 0.71 0.71 0.71 0.70 0.70 0.70 0.70 0.70 0.69 0.68 0.67 0.67 0.66 0.66 0.64 0.63 0.62 0.61 0.60 0.60 0.58 0.56 0.54 0.52 0.51 0.50 0.47
a Pearson correlations based on responses from 1 642 572 patients at 1 503 hospitals received from January 1 to December 31, 2013. Only hospitals with at least 30 responses to HCAHPS and Press Ganey survey items were included in the analysis.
the avoidable suffering or harm that occurs
when caregivers provide suboptimal care (eg, care that is not defect-free adds unnecessary suffering to the patient’s experience) Hospital-induced patient suffering also has a postdischarge impact. Recent research points to patient
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suffering as a potential contributor to unnecessary hospital readmissions in the form of ‘‘posthospitalization syndrome.’’ Only a minority of patients are readmitted within 30 days for the same condition, suggesting there are other causes for postdischarge illness vulnerability.9 Posthospitalization syndrome describes a generalized
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risk for illness after discharge that results from the stress patients experience during their hospital stay.10 The hospital environment produces stress reactions by ‘‘exposing patients to incessant loud noises, a lack of privacy, awakenings in the middle of the night, and examinations by strangers who fail to identify themselves [and] may be an important contributing cause of transient vulnerability.’’11(p2169) Reducing the inherent and avoidable forms of suffering, including avoidable stress, is a way to restore wellness, improve health, and/or provide palliative care with dignity. According to the National Quality Forum, a patient’s experience of care is his/her report of the quality of care received and should be treated equally to other health outcome performance measures.12 Numerous studies have identified positive associations between improved patient experiences and better health outcomes.13-20 If nursing professionals design clinical, operational, cultural, and behavioral aspects of care specifically to alleviate suffering, improved patient experiences and outcomes will follow. Although it may not be possible to eradicate inherent suffering, nursing staff should mitigate it when possible by promoting confidence in the care team’s clinical skills, effectively managing pain, and ensuring patient safety protocols are followed (see Table, Supplemental Digital Content 1, http://links.lww.com/ JONA/A333). Defect-free care should be the goal for all patient encounters. Therefore, it is incumbent upon care providers to remove barriers to optimal care. This includes creating a culture of teamwork and improved care coordination; interacting respectfully with colleagues, patients, and families; and providing a clean, quiet environment conducive to healing and recovery. Defect-free care also includes preventing exposure to process deficiencies that create additional patient suffering through unnecessary waits or lack of timely communication.21 Compassionate Connected Care (C3) is a framework to address the challenges of reducing patient suffering. The approach integrates the clinical, operational, cultural, and behavioral aspects of care to provide the best possible patient experience in any setting (Figure 1). It identifies specific action items that will help nurses and other caregivers have the greatest impact on reducing patient suffering. The 4 C3 domains link clinical excellence with outcomes; operational efficiency with quality; caring behaviors with action; and the organization’s mission, vision, and values with engagement. This construct correlates causes of suffering with specific preventive measures in each category to improve patient experience. It addresses patient needs in these domains and confronts potential areas of dysfunction with tangible action (Table 2). Nurses have a significant impact on how patients perceive
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Figure 1. Compassionate Connected Care.
their overall care experience4,22 and therefore are optimally positioned to apply C3 to reduce patient suffering.
Challenges in Addressing Suffering Improving patient experience involves understanding suffering at the individual patient level and developing strategies to address both inherent and avoidable suffering. One challenge in addressing patient suffering is the focus on simulated clinical training rather than previous hands-on clinical experiences.23,24 A confounding issue is the focus on automation.25 Online charting in the patient room has the potential to decrease the perception of connectedness with patients and must be proactively addressed. Nurse educators and leaders must teach and emphasize empathy to new and experienced nurses to ensure caring behaviors. In the stress-filled environments of today’s acute care hospitals, the vulnerability of nursing staff and leaders to compassion fatigue and burnout26,27 creates a barrier to patient-centered care and serves as a barrier in addressing suffering. Organizational culture factors heavily into compassion fatigue. Research supports that nurse engagement is highest when nurses have been with an organization less than 6 months.4 Engagement decreases significantly after that and does not increase again until nurses have been with an organization for more than 20 years. More worrisome, the closer the nurse is to the bedside, the less engaged they are. To engage nurses in evidence-based initiatives, nurse leaders need to implement actions to address concerns and reengage clinical nurses. Nurse leaders must recognize that caregivers are vulnerable to compassion fatigue, burnout, and lack of engagement and proactively intervene. Becoming immune to caregiver concerns will allow excuses and suboptimal relationships to define the patient experience. Involving nurses in decision making for process changes fosters engagement and a renewed focus on reducing patient suffering.28 ‘‘When managers create organizational structures promoting autonomy and
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Table 2. C3 Themes and Recommendations Theme
Examples
1. Acknowledge suffering
Acknowledge that patients are suffering and show them that you understand
Bearing witness to their suffering shows patients that you care. & A nurse says, ‘‘I’m sorry’’ to a patient who did not sleep well the night before. & A clinician, who has just told a daughter that her mother is terminally ill, sits with her to console her. & When care does not go as planned, a nursing staff member apologizes, acknowledges the impact on the patient, and engages the patient in exploring options. Asking the patient what he/she is worried about allows him/her to be a person rather than a disease. & A clinician asks the patient what he/she is most concerned about. & While caring for a patient, a clinician discovers something personal about the patient to establish a connection and make a positive memorable moment for future interactions with the care team. & A clinician notes the patient’s greatest concern on the communication board, so all caregivers are aware. Anticipating and mitigating the patient’s discomfort shows concern for his/her suffering. & A nurse applies EMLA cream to the patient’s hand before starting an IV. & A staff member updates the patient and family during a delay at least every 30 min. & A staff member informs the patient and family of what to expect prior to beginning each procedure or test.
2. Body language matters
Exhibit positive nonverbal communication skills
Eye contact matters. & A clinician sits at eye level and looks the patient in the eye during conversations. & As the patient begins to say what is really on his/her mind, a caregiver pushes his/her laptop aside, leans forward, and listens attentively. & A caregiver explains to the patient that he/she is listening and is fully engaged with the patient while documenting on the computer. Physically touching the patient closes distance. & A nurse gently holds the patient’s shoulder while obtaining blood pressure. & A clinician takes a seat and holds the patient’s hand when the patient starts to cry. & A nurse leader makes a point of shaking hands with the patient and the patient’s visitors when introducing himself/herself. Body position matters. & A clinician sits face-to-face with the patient while talking with her. & A caregiver sits at eye level with the patient. & A caregiver does not turn his/her back to the patient until the interaction is over and the caregiver leaves the room.
3. Anxiety is suffering
Understand that anxiety and uncertainty are negative outcomes that must be addressed
Reducing uncertainty and anxiety for patients and families acknowledges that they are in a stressful situation. & A caregiver rounds on his/her patients frequently and in a way that is purposeful and meaningful to the patientVinquiring about pain, positioning, toileting, and at least 1 ‘‘nonYdisease/treatment-oriented’’ discussion topic. & A staff member notices a ‘‘lost guest’’ and personally escorts the person to his/her destination. & A clinician provides reassuring phrases to a concerned patient (eg, Mrs Smith, I am going to be with you every step of the way; Mrs Smith, we are going to take very good care of you; Mrs Smith, we are going to do this together). Reducing waits shows we understand patients’ suffering and respect their time. & A nursing staff member ensures there is no lag in response time when patients press their call lights. & A staff member who sees a call light enters the patient’s room to inquire if he/she can help rather than passing by. & Staff members work together to reduce waiting time for bed placement, transfers, and testing.
4. Coordinate care
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Recommendation
(continues)
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Table 2. C3 Themes and Recommendations, Continued Theme
Recommendation
Examples
4. Coordinate care
Show patients that their care is coordinated and continuous and that the care team is always there for them
Showing patients that the relationship doesn’t end when they are not directly in contact deepens the relationship. & A clinician calls the patient for follow-up within 48 h. & A caregiver ‘‘manages up’’ the staff who will be caring for the patient during the next shift, complementing the caregivers on the care team. & A caregiver uses the ‘‘teach-back’’ method to ensure her patient understands his/her discharge instructions.
5. Caring transcends diagnosis
Demonstrate real caring that goes beyond delivery of medical interventions
Personal touches outside medical care strengthen relationships. & A nursing assistant brings a patient his/her favorite dish from the cafeteria as he/she awakens from surgery. & The director of service excellence walks a patient’s service dog outside the hospital to give a stressed family member time to grab lunch. & A nurse manager talks with the patient about his/her children. Caring for the patient means caring for the family. & A nurse gives a warm blanket to a family member who is cold. & On a nightly basis, a nurse holds the phone to the ear of a terminally ill patient, so his/her daughter can say goodnight. & A caregiver provides instructions to the family prior to discharge to ensure they are comfortable with caring for the patient at home.
6. Autonomy reduces suffering
Promote autonomy to preserve patient dignity
The patient is a full participant in guiding his/her care. & A clinician asks his/her patient and the patient’s family members about their preferences in care issues lying ahead. & A clinician asks the patient for his/her preferences on even minor issues, such as which hand he/she prefers the intravenous line to be in. & A clinician provides a full range of care options when discussing diagnosis and treatment plans with a patient.
encouraging participative decision making that empower nurses to deliver optimal care, they promote a greater sense of fit between nurses’ expectations of work-life quality and organizational goals and processes, thereby creating greater work engagement and lower burnout.’’29(p364)
Using Data Strategically The value of data and thus evidence is not always transparent to staff. If leaders report that the hospital is losing money based on Hospital Consumer Assessment of Healthcare Providers and Systems (HCAHPS) or value-based purchasing30 scores, it often means little to staff because they may think of the hospital as a stable corporate entity. When the fiscal impact of quality measurement is put in a perspective that nurses can relate to, translating the dollars into valuable resources such as additional nurses, equipment upgrades, and training opportunities, nurse managers are able to relate it to their role in patient care and the patient experience.
Illustrating How Patients and Staff Both Benefit From Clinical Excellence Clinical nurses are more likely to adopt evidence-based initiatives if the benefits to patients are communicated
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as well as the benefits to nursing.31 For example, patients who are involved in decisions about their care tend to have better outcomes.32 The scores result from those efforts but are not the focus of the improvement effort. This changes the dialogue. Helping nurses understand that it is all about the patient and not a score or percentile rank is critical for developing an engaged and empathetic nursing staff. Nurse executives and managers also can engage staff by presenting performance data to staff more effectively. Segmenting data by patient condition (see Table, Supplemental Digital Content 2, http://links .lww.com/JONA/A334) reveals that patients with medical conditions, such as congestive heart failure, perceive their care differently than do patients who have surgical procedures such as total knee replacements. The data are even more telling when comparing patient conditions across the 4 C3 domains: clinical process, operational efficiencies, organizational culture, and caring behaviors. The C3 framework provides nurse leaders and managers a framework to look at data strategically with a goal of reducing suffering. It targets improvement toward patients with specific process, physical, and emotional needs based on service line or clinical condition. Each patient group represents different care experiences, so evaluations of care should be individualized and may vary based on the type of care the
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patient received. For example, medical patients report worse pain management than do surgical patients (see Figure, Supplemental Digital Content 3, http://links .lww.com/JONA/A335). In a survey of 1 335 982 patients discharged in 2012, more than 70% of all patients reported needing medicine for pain during their stay, including the majority of surgical patients (85.8%) and a high proportion of medically treated patients (54.1%) (D. E. Mylod, PhD, written communication, June 2014). Both seasoned and novice practitioners may lack intensity of focus regarding pain management for surgical patients because of the perception of ‘‘predictability.’’33 Clinicians expect surgical patients to have pain and typically have protocols in place to ensure routine pain assessment and medication administration.34,35 However, the same may not be true for those patients in whom there is not the perception of predictability at all. Using the C3 framework to analyze patient-reported data reveals valuable insights to target performance improvement and engage staff to reduce patient suffering in multiple patient populations.
Remember the Patient Nurses have traditionally focused on P’s: pain, positioning, privacy, possessions, and so on. These P’s are all about the patient. C3 provides a strategic framework for reducing patient suffering through tangible actions that address the ‘‘how’’ of patient care. Consider these P’s: proximity, proactivity, positioning, and pace, when addressing how clinicians care for patients in terms of the patient experience. These actions convey interest and invoke trust, enhancing the perception of empathy and promoting effective verbal communication. Moreover, they add a human touchVconnectionVthat alleviates fear, anxiety, and thus suffering. Proximity The connection begins with proximity to the patient. Sitting down next to the patient demonstrates interest in the patient. One of the authors (C.D.) teaches a nursing leadership and management course at Missouri State University and conducted a short, subjective study to illustrate the value of proximity. Nursing students were directed to change only 1 thing about their practice during a given week: They were to sit down when talking with a patient. The information shared with patients was not different, and students did not alter the amount of time spent with each patient. When the students returned to class, they reported that patients told them that they were better nurses than the staff nurses! Although there is no substitute for technical skill, small changes in caring behavior can go a long
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way in reducing suffering and improving the patient experience through connecting. Proactivity Proactively supplying information supports connecting and caring. Hospitalized patients often lack the knowledge necessary to manage medical conditions and may not know what they do not know. As direct caregivers, nurses own the responsibility to identify what a patient needs to know and to supply it to them without the patient having to ask. Navigating through a complex medical system to manage a new disease process or recover from injury is a cause of anxiety, fear, and confusion.11 Patients often forget to ask the questions they intended to ask and also forget the information shared.36 This lack of complete and understandable information serves to exacerbate anxiety. In the absence of information, people will act on their own accord, but their decisions will not have the benefit of knowledge in evidence-based practice. Positioning Positioning is important for making eye contact with the patient, also supporting connecting and caring. Physical limitations, bed rest, splints, and other therapeutic restraints can limit a patient’s ability to adjust position. Caregivers, on the other hand, have the ability to move freely and should position themselves to ensure eye contact is easy for the patient. Positioning and proactive information sharing are applicable to communication. It is important that the patient can read and understand what is on the whiteboard or care plan. The whiteboard in the room is for the patient and family to support information sharing. Pace Caregivers should be cognizant of the patient’s level of comprehension. Information should be presented slowly, repeated often, and conveyed using a ‘‘teachback’’ method to ensure understanding.37 A nurse is familiar with the content being shared and therefore may make assumptions about patient comprehension that may or may not be valid, which could affect the patient’s compliance and successful recovery.38 Also, consideration for the pace of discharge instruction is important to ensure patient comprehension, connectedness, and compliance. Far too frequently, discharge information is provided in the last 30 minutes before the patient leaves the hospital or care setting. Patients being discharged from the hospital who have a clear understanding of their after-hospital care instructions, including how to take their medicines and when to make follow-up appointments, are 30% less likely to be readmitted or visit the emergency
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department than patients who lack this information, according to an Agency for Healthcare Research and Quality (AHRQ)Yfunded study.39 AHRQ advocates the reengineered discharge process in which instructions are provided from admission and throughout the patient’s stay.39 The paradigm for discharge education should shift from ‘‘discharge instruction’’ to ‘‘patient instruction.’’ Patient instruction should be supported by whiteboard use, hourly rounding, and bedside shift reports40-42 as evidence-based practices. Practices are shifting as nurse leaders respond to the changing patient experience expectations. The amount of suffering experienced by patients due to a lack of understandable information has not been fully explored and is an area for future research. The distress of anxiety and confusion are avoidable or can be minimized by providing patients with the information they need in a way they can understand. In this way, patients regain some control over their own circumstance and outcomes.
Conclusion It is not the role of nursing professionals to make patients happy or satisfied; our role is to reduce suffering and optimize the patient experience. The C3 frame-
work supports a focus on inherent patient needs in every healthcare setting. C3 reminds caregivers of their obligation to eliminate all avoidable pain and suffering that patients experience as well as the responsibility to ease any suffering associated with medical conditions and their treatment. To succeed in the mission to improve the patient condition, nurses must apply tools proven to improve communication, reduce anxiety, and bolster teamwork for coordination of care. As organizations seek to reduce suffering, they must support opportunities to improve skills that help caregivers connect with patients. Comprehensive data analysis is essential in identifying best practices and opportunities for improvement. Universally, patients suffer, and clinicians seek to help. By addressing the domains of patient experienceV clinical, operational, cultural, and behavioralVcaregivers are able to look at the data differently and identify opportunities for improvement that are not about a score or a dollar amount, but are about the patient. Bringing people who care for patients back to the heart of compassion, connection, and care reminds us that we have an obligation that is more than a number. The positive scores and dollars are possible only when linked back to engaged caregivers who engage the patient.
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10. Krumholz HM. Post-hospital syndromeYan acquired, transient condition of generalized risk. N Engl J Med. 2013;368(2): 100-102. 11. Detsky AS, Krumholz HM. Reducing the trauma of hospitalization. JAMA. 2014;311(21):2169-2170. 12. National Quality Forum. Patient reported outcomes (PROs) in performance measurement. 2013. http://www.qualityforum .org/Publications/2012/12/Patient-Reported_Outcomes_ in_Performance_Measurement.aspx. Accessed July 1, 2014. 13. Boulding W, Glickman SW, Manary MP, Schulman KA, Staelin R. Relationship between patient satisfaction with inpatient care and hospital readmission within 30 days. Am J Manag Care. 2011;17(1):41-48. 14. Doyle C, Lennox L, Bell D. A systematic review of evidence on the links between patient experience and clinical safety and effectiveness. BMJ Open. 2013;3:e001570. 15. Glickman SW, Boulding W, Manary M, et al. Patient satisfaction and its relationship with clinical quality and inpatient mortality in acute myocardial infarction. Circ Cardiovasc Qual Outcomes. 2010;3(2):188-195. 16. Isaac T, Zaslavsky AM, Cleary PD, Landon BE. The relationship between patients’ perception of care and measures of hospital quality and safety. Health Serv Res. 2010;45(4): 1024-1040. 17. Jha AK, Orav EJ, Zheng J, Epstein AM. Patients’ perception of hospital care in the United States. N Engl J Med. 2008; 359(18):1921-1931.
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THE JOURNAL OF NURSING ADMINISTRATION
Reducing Patient Suffering Through Compassionate Connected Care Christina Dempsey, MSN, MBA, RN, CNOR, CENP Sharyl Wojciechowski, MA
Elizabeth McConville, BSN, RN, CPHQ Maxwell Drain, MA, CPHQ
Patient experience continues to play an increasingly critical role in quality outcomes and reimbursement. Nurse executives are tasked with helping direct-care nurses connect with patients to improve care experiences. Connecting with patients in compassionate ways to alleviate inherent patient suffering and prevent avoidable suffering is key to improving the patient experience. The Compassionate Connected Care framework identifies strategies for meeting the challenges of connecting with patients and reducing suffering. Methods integrate clinical, operational, cultural, and behavioral aspects of care to target patient needs based on condition. Caregivers learn to better express empathy and compassion to patients, and nurse leaders are better equipped to engage nurses at the bedside.
that compassion is missing from the US healthcare system despite broad agreement that it is important for successful medical treatment. This highlights nursing concerns with compassion fatigue often related to organizational structure and culture. Caregivers must recognize that many patients are unprepared for the life changes brought on by disease and trauma and lack the knowledge necessary to deal with these changes. To reduce suffering, nurses and physician colleagues must engineer approaches that incorporate nurse empowerment and holistic, compassionate care. All patients can experience suffering, not just those with serious or life-threatening diseases. Improving the patient experience extends beyond symptom management in acute, chronic, or late-stage disease3 to encompass the clinical, operational, cultural, and behavioral aspects of care that define the patient experience in every setting.4,5 Patient experience is influenced by the clinical care of the patient, the operations of the organization, the culture of the care teams, and the behaviors of every person in the organization interacting with the patient (Table 1).
Suffer (v.): to undergo or feel pain or distress.1 For all caregivers, awareness of suffering in others invokes a call to action. The most obvious response is to mitigate the unavoidable discomforts associated with a specific disease or trauma: physical pain, nausea, fatigue, and various other physical symptoms. Patients present with symptoms, but they also sacrifice privacy and control over most aspects of their lives when entrusting themselves to another’s care. In response to that trust are empathy and understanding. In a 2010 survey,2 close to half of patients and physicians said Author Affiliations: Chief Nursing Officer (Ms Dempsey), Patient Experience Knowledge Manager (Ms Wojciechowski), Clinical Quality Knowledge Manager (Ms McConville), and Director, Knowledge Management (Mr Drain), Press Ganey Associates, Inc, South Bend, Indiana. The authors declare no conflicts of interest. Correspondence: Ms Dempsey, Press Ganey Associates, Inc, 5277 S Whitmore Ave, Springfield, MO 65810 ([email protected]). Supplemental digital content is available for this article. Direct URL citations appear in the printed text and are provided in the HTML and PDF versions of this article on the journal’s Web site (www.jonajournal.com). DOI: 10.1097/NNA.0000000000000110
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Patient Suffering The goal of patient-centered care is to treat a patient’s illness and to prevent or treat the symptoms, adverse effects, and suffering associated with the illness and treatment.6 Whereas certain aspects of patient suffering are inherent to any healthcare experience, others are clearly preventable7,8: the inherent suffering that the diagnosed condi-
tion brings to a medical experience (eg, a disease may create symptoms and reduced functioning) the inherent suffering that occurs as part of receiving medical treatment (eg, treatment may be uncomfortable, have adverse effects, and disrupt one’s life)
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Table 1. Correlations Between HCAHPS and Press Ganey Inpatient Survey Items and HCAHPS ‘‘Recommend This Hospital’’ Item Survey Press Ganey Press Ganey Press Ganey Press Ganey Press Ganey Press Ganey Press Ganey Press Ganey Press Ganey Press Ganey Press Ganey Press Ganey Press Ganey Press Ganey Press Ganey Press Ganey Press Ganey HCAHPS Press Ganey Press Ganey Press Ganey HCAHPS Press Ganey Press Ganey Press Ganey HCAHPS Press Ganey Press Ganey Press Ganey Press Ganey HCAHPS HCAHPS Press Ganey Press Ganey HCAHPS Press Ganey Press Ganey HCAHPS HCAHPS HCAHPS Press Ganey Press Ganey Press Ganey HCAHPS HCAHPS HCAHPS HCAHPS HCAHPS HCAHPS Press Ganey HCAHPS Press Ganey
Correlation Coefficient (r)a
Abbreviated Item Staff worked together care for you How well your pain was controlled Staff include decisions re: trtmnt Explanations: happen during T&T Response concerns/complaints Staff addressed emotional needs Nurses kept you informed Staff attitude toward visitors Staff concern for your privacy Skill of the nurses Nurses’ attitude toward requests Attention to special/personal needs Skill of physician Friendliness/courtesy of the nurses Instructions care at home Speed of admission Courtesy of person admitting Staff do everything help with pain Courtesy of person started IV Wait time for test or treatments Friendliness/courtesy of physician Nurses expl in way you understand Extent felt ready discharge Physician concern questions/worries Room cleanliness Nurses listen carefully to you Promptness response to call Physician kept you informed Courtesy of person took blood Room temperature Nurses treat with courtesy/respect Pain well controlled Pleasantness of room decor Courtesy of person cleaning room Tell you what new medicine was for Time physician spent with you Accommodations and comfort visitors Doctors treat with courtesy/respect Doctors expl in way you understand Doctors listen carefully to you Courtesy of person served food Speed of discharge process Noise level in and around room Help toileting soon as you wanted Call button help soon as wanted it Info re symptoms/prob to look for Staff describe medicine adverse effect Staff talk about help when you left Room and bathroom kept clean Temperature of the food Area around room quiet at night Quality of the food
0.84 0.81 0.81 0.81 0.80 0.80 0.80 0.79 0.78 0.78 0.78 0.78 0.77 0.77 0.76 0.75 0.75 0.75 0.74 0.74 0.74 0.73 0.73 0.73 0.72 0.71 0.71 0.71 0.70 0.70 0.70 0.70 0.70 0.69 0.68 0.67 0.67 0.66 0.66 0.64 0.63 0.62 0.61 0.60 0.60 0.58 0.56 0.54 0.52 0.51 0.50 0.47
a Pearson correlations based on responses from 1 642 572 patients at 1 503 hospitals received from January 1 to December 31, 2013. Only hospitals with at least 30 responses to HCAHPS and Press Ganey survey items were included in the analysis.
the avoidable suffering or harm that occurs
when caregivers provide suboptimal care (eg, care that is not defect-free adds unnecessary suffering to the patient’s experience) Hospital-induced patient suffering also has a postdischarge impact. Recent research points to patient
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suffering as a potential contributor to unnecessary hospital readmissions in the form of ‘‘posthospitalization syndrome.’’ Only a minority of patients are readmitted within 30 days for the same condition, suggesting there are other causes for postdischarge illness vulnerability.9 Posthospitalization syndrome describes a generalized
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risk for illness after discharge that results from the stress patients experience during their hospital stay.10 The hospital environment produces stress reactions by ‘‘exposing patients to incessant loud noises, a lack of privacy, awakenings in the middle of the night, and examinations by strangers who fail to identify themselves [and] may be an important contributing cause of transient vulnerability.’’11(p2169) Reducing the inherent and avoidable forms of suffering, including avoidable stress, is a way to restore wellness, improve health, and/or provide palliative care with dignity. According to the National Quality Forum, a patient’s experience of care is his/her report of the quality of care received and should be treated equally to other health outcome performance measures.12 Numerous studies have identified positive associations between improved patient experiences and better health outcomes.13-20 If nursing professionals design clinical, operational, cultural, and behavioral aspects of care specifically to alleviate suffering, improved patient experiences and outcomes will follow. Although it may not be possible to eradicate inherent suffering, nursing staff should mitigate it when possible by promoting confidence in the care team’s clinical skills, effectively managing pain, and ensuring patient safety protocols are followed (see Table, Supplemental Digital Content 1, http://links.lww.com/ JONA/A333). Defect-free care should be the goal for all patient encounters. Therefore, it is incumbent upon care providers to remove barriers to optimal care. This includes creating a culture of teamwork and improved care coordination; interacting respectfully with colleagues, patients, and families; and providing a clean, quiet environment conducive to healing and recovery. Defect-free care also includes preventing exposure to process deficiencies that create additional patient suffering through unnecessary waits or lack of timely communication.21 Compassionate Connected Care (C3) is a framework to address the challenges of reducing patient suffering. The approach integrates the clinical, operational, cultural, and behavioral aspects of care to provide the best possible patient experience in any setting (Figure 1). It identifies specific action items that will help nurses and other caregivers have the greatest impact on reducing patient suffering. The 4 C3 domains link clinical excellence with outcomes; operational efficiency with quality; caring behaviors with action; and the organization’s mission, vision, and values with engagement. This construct correlates causes of suffering with specific preventive measures in each category to improve patient experience. It addresses patient needs in these domains and confronts potential areas of dysfunction with tangible action (Table 2). Nurses have a significant impact on how patients perceive
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Figure 1. Compassionate Connected Care.
their overall care experience4,22 and therefore are optimally positioned to apply C3 to reduce patient suffering.
Challenges in Addressing Suffering Improving patient experience involves understanding suffering at the individual patient level and developing strategies to address both inherent and avoidable suffering. One challenge in addressing patient suffering is the focus on simulated clinical training rather than previous hands-on clinical experiences.23,24 A confounding issue is the focus on automation.25 Online charting in the patient room has the potential to decrease the perception of connectedness with patients and must be proactively addressed. Nurse educators and leaders must teach and emphasize empathy to new and experienced nurses to ensure caring behaviors. In the stress-filled environments of today’s acute care hospitals, the vulnerability of nursing staff and leaders to compassion fatigue and burnout26,27 creates a barrier to patient-centered care and serves as a barrier in addressing suffering. Organizational culture factors heavily into compassion fatigue. Research supports that nurse engagement is highest when nurses have been with an organization less than 6 months.4 Engagement decreases significantly after that and does not increase again until nurses have been with an organization for more than 20 years. More worrisome, the closer the nurse is to the bedside, the less engaged they are. To engage nurses in evidence-based initiatives, nurse leaders need to implement actions to address concerns and reengage clinical nurses. Nurse leaders must recognize that caregivers are vulnerable to compassion fatigue, burnout, and lack of engagement and proactively intervene. Becoming immune to caregiver concerns will allow excuses and suboptimal relationships to define the patient experience. Involving nurses in decision making for process changes fosters engagement and a renewed focus on reducing patient suffering.28 ‘‘When managers create organizational structures promoting autonomy and
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Table 2. C3 Themes and Recommendations Theme
Examples
1. Acknowledge suffering
Acknowledge that patients are suffering and show them that you understand
Bearing witness to their suffering shows patients that you care. & A nurse says, ‘‘I’m sorry’’ to a patient who did not sleep well the night before. & A clinician, who has just told a daughter that her mother is terminally ill, sits with her to console her. & When care does not go as planned, a nursing staff member apologizes, acknowledges the impact on the patient, and engages the patient in exploring options. Asking the patient what he/she is worried about allows him/her to be a person rather than a disease. & A clinician asks the patient what he/she is most concerned about. & While caring for a patient, a clinician discovers something personal about the patient to establish a connection and make a positive memorable moment for future interactions with the care team. & A clinician notes the patient’s greatest concern on the communication board, so all caregivers are aware. Anticipating and mitigating the patient’s discomfort shows concern for his/her suffering. & A nurse applies EMLA cream to the patient’s hand before starting an IV. & A staff member updates the patient and family during a delay at least every 30 min. & A staff member informs the patient and family of what to expect prior to beginning each procedure or test.
2. Body language matters
Exhibit positive nonverbal communication skills
Eye contact matters. & A clinician sits at eye level and looks the patient in the eye during conversations. & As the patient begins to say what is really on his/her mind, a caregiver pushes his/her laptop aside, leans forward, and listens attentively. & A caregiver explains to the patient that he/she is listening and is fully engaged with the patient while documenting on the computer. Physically touching the patient closes distance. & A nurse gently holds the patient’s shoulder while obtaining blood pressure. & A clinician takes a seat and holds the patient’s hand when the patient starts to cry. & A nurse leader makes a point of shaking hands with the patient and the patient’s visitors when introducing himself/herself. Body position matters. & A clinician sits face-to-face with the patient while talking with her. & A caregiver sits at eye level with the patient. & A caregiver does not turn his/her back to the patient until the interaction is over and the caregiver leaves the room.
3. Anxiety is suffering
Understand that anxiety and uncertainty are negative outcomes that must be addressed
Reducing uncertainty and anxiety for patients and families acknowledges that they are in a stressful situation. & A caregiver rounds on his/her patients frequently and in a way that is purposeful and meaningful to the patientVinquiring about pain, positioning, toileting, and at least 1 ‘‘nonYdisease/treatment-oriented’’ discussion topic. & A staff member notices a ‘‘lost guest’’ and personally escorts the person to his/her destination. & A clinician provides reassuring phrases to a concerned patient (eg, Mrs Smith, I am going to be with you every step of the way; Mrs Smith, we are going to take very good care of you; Mrs Smith, we are going to do this together). Reducing waits shows we understand patients’ suffering and respect their time. & A nursing staff member ensures there is no lag in response time when patients press their call lights. & A staff member who sees a call light enters the patient’s room to inquire if he/she can help rather than passing by. & Staff members work together to reduce waiting time for bed placement, transfers, and testing.
4. Coordinate care
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Recommendation
(continues)
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Table 2. C3 Themes and Recommendations, Continued Theme
Recommendation
Examples
4. Coordinate care
Show patients that their care is coordinated and continuous and that the care team is always there for them
Showing patients that the relationship doesn’t end when they are not directly in contact deepens the relationship. & A clinician calls the patient for follow-up within 48 h. & A caregiver ‘‘manages up’’ the staff who will be caring for the patient during the next shift, complementing the caregivers on the care team. & A caregiver uses the ‘‘teach-back’’ method to ensure her patient understands his/her discharge instructions.
5. Caring transcends diagnosis
Demonstrate real caring that goes beyond delivery of medical interventions
Personal touches outside medical care strengthen relationships. & A nursing assistant brings a patient his/her favorite dish from the cafeteria as he/she awakens from surgery. & The director of service excellence walks a patient’s service dog outside the hospital to give a stressed family member time to grab lunch. & A nurse manager talks with the patient about his/her children. Caring for the patient means caring for the family. & A nurse gives a warm blanket to a family member who is cold. & On a nightly basis, a nurse holds the phone to the ear of a terminally ill patient, so his/her daughter can say goodnight. & A caregiver provides instructions to the family prior to discharge to ensure they are comfortable with caring for the patient at home.
6. Autonomy reduces suffering
Promote autonomy to preserve patient dignity
The patient is a full participant in guiding his/her care. & A clinician asks his/her patient and the patient’s family members about their preferences in care issues lying ahead. & A clinician asks the patient for his/her preferences on even minor issues, such as which hand he/she prefers the intravenous line to be in. & A clinician provides a full range of care options when discussing diagnosis and treatment plans with a patient.
encouraging participative decision making that empower nurses to deliver optimal care, they promote a greater sense of fit between nurses’ expectations of work-life quality and organizational goals and processes, thereby creating greater work engagement and lower burnout.’’29(p364)
Using Data Strategically The value of data and thus evidence is not always transparent to staff. If leaders report that the hospital is losing money based on Hospital Consumer Assessment of Healthcare Providers and Systems (HCAHPS) or value-based purchasing30 scores, it often means little to staff because they may think of the hospital as a stable corporate entity. When the fiscal impact of quality measurement is put in a perspective that nurses can relate to, translating the dollars into valuable resources such as additional nurses, equipment upgrades, and training opportunities, nurse managers are able to relate it to their role in patient care and the patient experience.
Illustrating How Patients and Staff Both Benefit From Clinical Excellence Clinical nurses are more likely to adopt evidence-based initiatives if the benefits to patients are communicated
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as well as the benefits to nursing.31 For example, patients who are involved in decisions about their care tend to have better outcomes.32 The scores result from those efforts but are not the focus of the improvement effort. This changes the dialogue. Helping nurses understand that it is all about the patient and not a score or percentile rank is critical for developing an engaged and empathetic nursing staff. Nurse executives and managers also can engage staff by presenting performance data to staff more effectively. Segmenting data by patient condition (see Table, Supplemental Digital Content 2, http://links .lww.com/JONA/A334) reveals that patients with medical conditions, such as congestive heart failure, perceive their care differently than do patients who have surgical procedures such as total knee replacements. The data are even more telling when comparing patient conditions across the 4 C3 domains: clinical process, operational efficiencies, organizational culture, and caring behaviors. The C3 framework provides nurse leaders and managers a framework to look at data strategically with a goal of reducing suffering. It targets improvement toward patients with specific process, physical, and emotional needs based on service line or clinical condition. Each patient group represents different care experiences, so evaluations of care should be individualized and may vary based on the type of care the
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patient received. For example, medical patients report worse pain management than do surgical patients (see Figure, Supplemental Digital Content 3, http://links .lww.com/JONA/A335). In a survey of 1 335 982 patients discharged in 2012, more than 70% of all patients reported needing medicine for pain during their stay, including the majority of surgical patients (85.8%) and a high proportion of medically treated patients (54.1%) (D. E. Mylod, PhD, written communication, June 2014). Both seasoned and novice practitioners may lack intensity of focus regarding pain management for surgical patients because of the perception of ‘‘predictability.’’33 Clinicians expect surgical patients to have pain and typically have protocols in place to ensure routine pain assessment and medication administration.34,35 However, the same may not be true for those patients in whom there is not the perception of predictability at all. Using the C3 framework to analyze patient-reported data reveals valuable insights to target performance improvement and engage staff to reduce patient suffering in multiple patient populations.
Remember the Patient Nurses have traditionally focused on P’s: pain, positioning, privacy, possessions, and so on. These P’s are all about the patient. C3 provides a strategic framework for reducing patient suffering through tangible actions that address the ‘‘how’’ of patient care. Consider these P’s: proximity, proactivity, positioning, and pace, when addressing how clinicians care for patients in terms of the patient experience. These actions convey interest and invoke trust, enhancing the perception of empathy and promoting effective verbal communication. Moreover, they add a human touchVconnectionVthat alleviates fear, anxiety, and thus suffering. Proximity The connection begins with proximity to the patient. Sitting down next to the patient demonstrates interest in the patient. One of the authors (C.D.) teaches a nursing leadership and management course at Missouri State University and conducted a short, subjective study to illustrate the value of proximity. Nursing students were directed to change only 1 thing about their practice during a given week: They were to sit down when talking with a patient. The information shared with patients was not different, and students did not alter the amount of time spent with each patient. When the students returned to class, they reported that patients told them that they were better nurses than the staff nurses! Although there is no substitute for technical skill, small changes in caring behavior can go a long
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way in reducing suffering and improving the patient experience through connecting. Proactivity Proactively supplying information supports connecting and caring. Hospitalized patients often lack the knowledge necessary to manage medical conditions and may not know what they do not know. As direct caregivers, nurses own the responsibility to identify what a patient needs to know and to supply it to them without the patient having to ask. Navigating through a complex medical system to manage a new disease process or recover from injury is a cause of anxiety, fear, and confusion.11 Patients often forget to ask the questions they intended to ask and also forget the information shared.36 This lack of complete and understandable information serves to exacerbate anxiety. In the absence of information, people will act on their own accord, but their decisions will not have the benefit of knowledge in evidence-based practice. Positioning Positioning is important for making eye contact with the patient, also supporting connecting and caring. Physical limitations, bed rest, splints, and other therapeutic restraints can limit a patient’s ability to adjust position. Caregivers, on the other hand, have the ability to move freely and should position themselves to ensure eye contact is easy for the patient. Positioning and proactive information sharing are applicable to communication. It is important that the patient can read and understand what is on the whiteboard or care plan. The whiteboard in the room is for the patient and family to support information sharing. Pace Caregivers should be cognizant of the patient’s level of comprehension. Information should be presented slowly, repeated often, and conveyed using a ‘‘teachback’’ method to ensure understanding.37 A nurse is familiar with the content being shared and therefore may make assumptions about patient comprehension that may or may not be valid, which could affect the patient’s compliance and successful recovery.38 Also, consideration for the pace of discharge instruction is important to ensure patient comprehension, connectedness, and compliance. Far too frequently, discharge information is provided in the last 30 minutes before the patient leaves the hospital or care setting. Patients being discharged from the hospital who have a clear understanding of their after-hospital care instructions, including how to take their medicines and when to make follow-up appointments, are 30% less likely to be readmitted or visit the emergency
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department than patients who lack this information, according to an Agency for Healthcare Research and Quality (AHRQ)Yfunded study.39 AHRQ advocates the reengineered discharge process in which instructions are provided from admission and throughout the patient’s stay.39 The paradigm for discharge education should shift from ‘‘discharge instruction’’ to ‘‘patient instruction.’’ Patient instruction should be supported by whiteboard use, hourly rounding, and bedside shift reports40-42 as evidence-based practices. Practices are shifting as nurse leaders respond to the changing patient experience expectations. The amount of suffering experienced by patients due to a lack of understandable information has not been fully explored and is an area for future research. The distress of anxiety and confusion are avoidable or can be minimized by providing patients with the information they need in a way they can understand. In this way, patients regain some control over their own circumstance and outcomes.
Conclusion It is not the role of nursing professionals to make patients happy or satisfied; our role is to reduce suffering and optimize the patient experience. The C3 frame-
work supports a focus on inherent patient needs in every healthcare setting. C3 reminds caregivers of their obligation to eliminate all avoidable pain and suffering that patients experience as well as the responsibility to ease any suffering associated with medical conditions and their treatment. To succeed in the mission to improve the patient condition, nurses must apply tools proven to improve communication, reduce anxiety, and bolster teamwork for coordination of care. As organizations seek to reduce suffering, they must support opportunities to improve skills that help caregivers connect with patients. Comprehensive data analysis is essential in identifying best practices and opportunities for improvement. Universally, patients suffer, and clinicians seek to help. By addressing the domains of patient experienceV clinical, operational, cultural, and behavioralVcaregivers are able to look at the data differently and identify opportunities for improvement that are not about a score or a dollar amount, but are about the patient. Bringing people who care for patients back to the heart of compassion, connection, and care reminds us that we have an obligation that is more than a number. The positive scores and dollars are possible only when linked back to engaged caregivers who engage the patient.
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