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. Author manuscript; available in PMC: 2023 Sep 1.
Published in final edited form as: Clin Chest Med. 2022 Sep;43(3):539–550. doi: 10.1016/j.ccm.2022.05.008

Patient-Centered and Family-Centered Care in the Intensive Care Unit

Katharine E Secunda a, Jacqueline M Kruser b,*
PMCID: PMC9885766  NIHMSID: NIHMS1839442  PMID: 36116821

INTRODUCTION

Patient-centered and family-centered care (PFCC) is widely recognized as integral to health-care delivery.1–3 Broadly defined, PFCC is organized around the needs, values, and preferences of patients and their families. In theory, this concept is obvious and easy to endorse. Yet, a growing body of evidence suggests PFCC is challenging to operationalize, particularly in the technical environment of the intensive care unit (ICU).

The ICU system is primarily designed to rapidly deliver life-sustaining technology. ICU clinicians are trained to save lives by making decisions quickly and with incomplete information. Through this fundamental nature of the ICU, an imperative to use life-sustaining technology arises that is described by medical social scientists as “giving the best care that is technically possible; the only legitimate and explicitly recognized constraint is the state of the art.”4 Although technological advances have indisputably reduced mortality in critical illness, there is growing recognition that a singular focus on technology can displace human dimensions of care.5 As Fig. 1 illustrates and sociologist Nancy Kentish-Barnes describes, “in the ICU, the patient becomes a body whose organs must be maintained, and this body in turn disappears behind the machines.”6

Fig. 1.

Fig. 1.

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ICU patient in a bed to facilitate prone positioning, surrounded by multiple sources of life-sustaining treatment.

Additionally, critically ill patients are often unable to communicate, which creates challenges for the ICU team to ascertain and uphold patients’ individual values, goals, and preferences. Only 1 of 3 American adults has created an advance directive (AD) describing their preferences about life-sustaining treatment.7 Even when ADs are established, multiple barriers limit their utility, including instability of adults’ end-of-life preferences8,9 and lack of access to AD documents when needed.10 Furthermore, when surrogate decision makers are making treatment decisions on behalf of a critically ill patient, they often struggle to accurately represent the patients’ preferences.11

In this article, we will discuss the history and terminology of PFCC, describe interventions to promote PFCC, and highlight limitations to the current model and future directions.

HISTORY AND TERMINOLOGY

The Picker Institute introduced the concept of “patient-centered care” in 1993 as a response to growing concerns about disease-centered or clinician-centered care.12 This concept included 5 dimensions: (1) respect for patients’ values, preferences, and expressed needs; (2) coordination and integration of care; (3) information, communication, and education; (4) physical comfort; (5) emotional support; and (6) involvement of family and friends.”12 In 2001, the Institute of Medicine advocated for patient-centered care that is “respectful of and responsive to individual patient preferences, needs, and values and ensures that patient values guide all clinical decisions.”1

Family-centered care—an approach to health care that is respectful of and responsive to families’ needs and values—was initially introduced in the context of pediatrics13 but is now recognized across populations and care settings.2 Family is defined by the patient as those who provide support and with whom the patient has a significant relationship. Given that patients in the ICU are often too ill to communicate, families are asked to participate in complex medical decision-making. Families also face significant caregiving burden for survivors of critical illness.14 Up to one-half of family members of critically ill patients experience psychological symptoms during and after the critical illness.15,16 Family-centered care in the ICU recognizes the importance of the family to a patient’s recovery, provides support for families for decision-making, caregiving and bereavement, and attempts to reduce future suffering for family members after critical illness.

Several fields and concepts inform and overlap with PFCC. Palliative care medicine is oriented around improving quality of life for patients with serious illness and families by attending to physical, psychosocial, and spiritual needs.17 The concept of dignity-conserving care emerged from palliative medicine but applies across the spectrum of health care and emphasizes patients’ personhood.18 The related model of human-centered care arose from the recognition that patients in the ICU are susceptible to dehumanization, the process by which individuals are seen as having lost their positive human qualities.19 To counter this tendency, human-centered care honors the dignity of all persons; it additionally identifies health-care professionals as potential beneficiaries of humanized care settings that may mitigate burnout.20,21 Finally, patient and family engagement (PFE) is considered a key pillar in quality improvement and patient safety initiatives.22 PFE describes a set of behaviors, organizational policies, and values that foster the inclusion of patients and families as active participants on health-care teams and in health-care systems. What unites each of these concepts is the value of human dignity and the notion that the fundamental purpose of health care is respecting the dignity and value of patients and their families.

MEASURING AND QUANTIFYING THE PROBLEM

There is an expanding body of literature dedicated to measuring PFCC. Gazarian and colleagues propose a practical definition of dignity and respect, suggesting that dignity represents the inherent worth of all human beings, and respect represents the behavioral or social norms that appropriately honor and acknowledge such dignity.23 Respectful ICU care requires (1) recognition of fundamental human needs (ie, physical, emotional, and psychological safety), (2) acknowledgment of patients as unique individuals, and (3) attention to the critical status and vulnerability of patients and families in the ICU.19,23–25 Specific behaviors of respectful care are well described25–27; concrete examples are shown in Table 1.19

Table 1.

Examples of respectful and disrespectful behaviors

Situation Disrespectful Approach Respectful Approach
Entering the patient’s room Enter without warning or acknowledgment Knock before entering
Approaching a patient’s bed Neglect to introduce oneself “Hello, I’m Dr. Schmidt. I’m a physician in training”
During emotionally charged encounters (eg, during ACLS or family meeting) Multiple unintroduced staff, only partly involved Appropriate staff present; those who are present are introduced and involved
Addressing a patient “Bud” or “Dear” or similarly colloquial term “Mr./Ms. Jones, what do you prefer that I call you?” (If know, use preferred name)
Necessary physical examination in conscious patient Wordlessly performing the examination “May I examine your abdomen?”
Necessary physical examination in unconscious patient Wordlessly performing the examination “I’ll be examining your abdomen”
Discussion of “code status” “If your heart stops, should we try to restart it?” A personalized approach that considers the contexts and trajectories of illness from the patient’s perspective
Rounding Patients and families excluded from rounds Patients and families included in rounds
Referring to patients Room 502 or “the heart” “Jill in 502” or “Steve with heart failure”
General protection of modesty/privacy Private parts of body exposed; drapes left open Only necessary parts of body exposed; drapes closed
Response to patient’s needs, including pain Slow response times Timely response
Attention during encounter Reading texts on cell phone; reviewing material for another patient Attending directly to the given patient and family
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Definition of abbreviation: ACLS, advanced cardiac life support.

Reprinted with permission of the American Thoracic Society.

Copyright © 2021 American Thoracic Society. all rights reserved.

Samuel M. Brown, Elie Azoulay, Dominique Benoit, Terri Payne Butler, Patricia Folcarelli, Gail Geller, Ronen Rozenblum, Ken Sands, Lauge Sokol-Hessner, Daniel Talmor, Kathleen Turner, and Michael D. Howell; The American Journal of Respiratory and Critical Care Medicine (Volume 197, Issue 11), pp. 1389–1395.

The American Journal of Respiratory and Critical Care Medicine is an official journal of the American Thoracic Society.

Approximately 30% of ICU patients and families report experiencing disrespect during their ICU stay.28,29 Disrespectful care can damage patient–clinician relationships, lead to long-lasting adverse effects on physical and psychological health,30,31 and may even be associated with risk of physical harm to patients.30,32–34 A multicenter survey demonstrated that more than one-third of ICUs had a poor “climate of mutual respect.”35 A climate in which disrespect and dehumanization is widely accepted may ingrain such behaviors into the wider ICU team and contribute to deficiencies in patient care.36–38 At the same time, high rates of burnout experienced by ICU clinicians may be linked to witnessing or participating in (sometimes unintentional) acts of dehumanization and disrespect.21

Most patient satisfaction surveys include a dimension related to respect.39 The Hospital Consumer Assessment of Healthcare Providers and Systems survey is a global assessment of patient satisfaction but does contain dimensions related to respect.40 The family satisfaction in the ICU survey measures satisfaction with care and decision-making, constructs that overlap with acts of respect.41,42 However, surveys assessing patient and family satisfaction may suffer from ceiling effects, wherein responses are skewed favorably, making it difficult to distinguish meaningful change in PFCC.43 Geller and colleagues developed a specific tool to measure ICU patient and family experiences of respect.28 This tool evaluates clinician behaviors such as greetings and introductions, bedside manner, listening and sharing information, attending to modesty, honoring patients’ preferences, and responding to patients’ needs/requests. These behaviors are simple, yet powerful and pragmatic to protect against dehumanization.

Respect is increasingly recognized as a system-level outcome; as such, measurement of respectful behaviors in the ICU requires assessment of unit-level structures. CORE-ICU is a clinician-reported measure of overall environment and climate of respect in the ICU.44 The ethical climate of the ICU, defined as the organizational practices and conditions that affect the way difficult patient care problems are discussed and resolved, is also crucial to optimal ICU functioning.45 The Ethical Decision-Making Climate Questionnaire measures latent factors affecting the decision-making climate in the ICU within 3 domains: interdisciplinary collaboration and communication, physician leadership, and ethical environment.35 Several investigators propose treating acts of disrespect as patient safety events and recommend using existing quality and safety frameworks (such as root cause analysis) to audit such incidents.46,47

INTERVENTIONS TO PROMOTE PATIENT-CENTERED AND FAMILY-CENTERED CARE

Personhood and Humanization

PFCC requires acknowledging patients as unique individuals. Several interventions emphasize eliciting information about patients that refocuses attention on personhood, guards against dehumanization, and promotes deeper connections among patients, families, and clinicians. Chochinov and colleagues developed the single question Patient Dignity Question18: “What do I need to know about you as a person to give you the best care possible?” Another questionnaire documenting personal attributes called “This is Me” (TIME) has been well-received by patients, and clinicians reported TIME enhanced their respect and compassion for patients.48 “About me” boards (Fig. 2) display important information about the patient’s background, personality, interests, and preferences. Such tools may deepen patient–clinician relationships, enhance interdisciplinary communication, and motivate patients and families.49–52 Clinicians describe a deeper sense of meaning and job satisfaction after implementation of a “Get to know me” tool.52

Fig. 2.

Fig. 2.

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ICU Diary “Get to Know Me” page. (From K Taylor A Blair, Sarah D Eccleston, Hannah M Binder, Mary S McCarthy; Journal of Patient Experience (Volume 4, Issue 1), pp. 4–9; copyright © 2017 by SAGE Publications, Inc.; with permission.)

ICU diaries are another intervention to affirm personhood and support patients and families. ICU diaries are written records of the ICU stay maintained by family members and clinicians and may allow patients to reconstruct their illness narrative, combat frightening memories, and regain a sense of reality.53–56 ICU diaries have been shown to mitigate the development of post-traumatic stress disorder (PTSD) symptoms, anxiety, and depression in ICU patients and reduce psychological symptoms for family members.53,55,57 Family members value ICU diaries because they help families to understand medical information, communicate with clinicians, and humanize the relationship with the patient and ICU team.58

Family Presence and Participation

Active partnership with patients’ families in the ICU is critical to PFCC. Family presence includes unrestricted visitation,59 participation in daily work rounds with the ICU team,60 and the invitation to remain present during CPR and procedures.61 Family presence in the ICU is associated with decreased anxiety, shorter length of stay, and higher patient and family satisfaction with care.2,62 Family presence has also been shown to decrease the risk for delirium.63,64 Family members’ active participation in patient care activities fosters PFCC. Qualitative studies demonstrate that family members value their role as a care provider for their loved ones in the ICU.65,66 Family members who partnered with nurses to deliver patient care such as bathing or massage perceived increased respect, collaboration, and support.67 Family participation in patient care rituals has been associated with reduced symptoms of PTSD 90 days after patient death or discharge.68

The COVID-19 pandemic has resulted in deimplementation of many family-centered care practices and has been associated with worse PFCC.69,70 Bereaved family members report not only poor communication and inadequate support during their loved ones’ ICU stay71 but also feelings of abandonment, powerlessness, and unreality, as well as disruptions in typical end-of-life rituals, which can lead to complicated grief.72,73 Limited family presence is linked to poor clinical outcomes. Visitation restrictions resulted in delayed decisions to limit treatments before death and lengthened ICU stays,74 and lack of family presence was associated with a higher risk of delirium for ICU patients with COVID-19.63 Prohibiting family presence has also negatively affected health-care workers. Clinicians reported moral distress related to changing visitation policies and restrictions.75,76 Health-care workers had to facilitate virtual “good byes” between families and dying patients, placing them more clearly in the face of suffering.77 These experiences add to the high burden of burnout in critical care providers.

Communication

A key tenant of PFCC is that patients’ values, goals, and preferences guide medical decision-making. Because family members are often surrogate decision-makers, routine, structured communication with attention to surrogates’ informational needs is widely recommended.2,78 Several randomized trials in the ICU have centered around communication interventions within multifaceted family support interventions.79–81 In a recent trial of a comprehensive family support intervention in the ICU, surrogate decision-makers in the intervention group reported higher quality of communication and degree of patient-centeredness and family-centeredness, although there was no difference in surrogates’ symptoms of anxiety or depression 6 months after ICU discharge.81 The ICU length of stay was lower among patients who died in the hospital in the intervention group. A recent meta-analysis of protocolized family support interventions demonstrated improved communication, enhanced shared decision-making with family, and reduced ICU length of stay.82 Improvements in communication with patients who cannot speak are also paramount to facilitate participation in decision-making and expression of their needs. Strategies to augment patients’ ability to communicate include the use of communication boards and speaking valves and leak speech for ventilated patients.83

THE FUTURE OF PATIENT-CENTERED AND FAMILY-CENTERED CARE

Significant progress has been made in recent years in the promotion of PFCC in the ICU. Yet, further attention is needed in 3 areas: disparities in health-care delivery, patient and family engagement (PFE), and intentional efforts to humanize the ICU workplace environment for the betterment of patients, families, and staff.

Health Disparities and Patient-Centered and Family-Centered Care

There are racial, ethnic, and socioeconomic disparities in the most common causes of morbidity and mortality in the United States.84 Disparities in incidence and outcomes of critical illness occur before, during, and after critical illness and involve individual, community, and hospital-level factors.85 There are notable disparities in PFCC-focused practices such as serious illness communication and end-of-life care.86–88 African Americans and individuals with limited English proficiency (LEP) experience worse communication quality89,90 are less likely to have ADs and more likely to receive high-intensity care before death and die in the ICU.87,91–93 Disparities in end-of-life care are mediated by multiple factors, including inconsistent access, provider biases, health-care literacy, and patient and family preferences.94 Importantly, more research is needed to understand whether differences in end-of-life care reflect differences in patients’ and families’ values and preferences or whether they represent disparities in health-care delivery.95

By being responsive to preferences, needs, values, and cultural traditions of patients and families, PFCC may reduce inequities in critical care. Specialty palliative care consultation and better serious illness communication may improve disparities in care.96 Palliative care consultation in seriously ill African Americans is associated with higher satisfaction with care, increased documentation of treatment preferences, and higher rates of home death and hospice referrals.97,98 A commitment to culturally competent communication may also mitigate disparities. Errors in medical interpretation are more frequent and more likely of clinical consequence when nonprofessional interpreters are used compared with professional interpreters.99 Implementation of protocols for scheduling interpreters and tracking adherence increases interpreter presence on family-centered rounds for families with LEP.100 Hospitals must stratify clinical, quality, and patient experience data by race, ethnicity, language, and socioeconomic status to better recognize disparities and identify opportunities for improvement. Health systems should provide clinicians with evidence-based racial and cultural sensitivity training and implicit and explicit bias training.101 Studies of communication or family support interventions often exclude people with LEP. We urgently need to include patients and families with diverse cultures and languages in such studies to better inform PFCC best practices.

Meaningful Patient and Family Engagement

PFE centers health-care delivery around the experiences and priorities of patients and families. Fig. 3 demonstrates 3 critical aspects of PFE: (1) engagement occurs along a continuum, (2) engagement occurs at different levels, and (3) multiple factors affect the willingness and ability of patients to engage. Health-care systems engage patients and families primarily through Patient and Family Advisory Councils (PFACs), organizations of current and former patients, family members, and care-givers that work with clinicians and hospital leadership to improve patient and family experience, advise on patient care practices, organizational policies and procedures, and recommend how to better measure and evaluate PFE.102,103 True PFE avoids tokenism, which exists when the unequal power relations among patients, families, and clinicians within the health-care system cause patients and families to have a circumscribed role in these processes.104,105 Organizations should empower PFACs to pursue meaningful projects, integrate patient and family advisors into governance bodies, ensure involvement in community health activities, and promote recruitment and sustained engagement of diverse patient and family representatives.

Fig. 3.

Fig. 3.

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A multidimensional framework for patient and family engagement in health and health care. (From Kristin L. Carman, Pam Dardess, Maureen Maurer, Shoshanna Sofaer, Karen Adams, Christine Bechtel, and Jennifer Sweeney; Health Affairs (Volume 32, Issue 2), pp. 223–231; copyright © 2013 by Project Hope.)

Similarly, patient engagement in research requires moving beyond simple participation to active partnership in research.106 The benefits of PFE in the research process are myriad. Lived experiences of patients and families can inform research questions and priorities, identify patient-centered and family-centered outcomes, and guide researchers to improve enrollment and consent processes. The Patient-Centered Outcomes Research Institute champions involvement of patients and families in every step of the research process and has led to a proliferation of patient, family, and community-engaged research.107

Humanism for Health-care Professionals

Critical care health-care professionals suffer high rates of burnout syndrome (BOS), which is characterized by exhaustion, depersonalization, and a reduced sense of personal accomplishment.21 BOS is associated with negative mental health outcomes for health-care workers, increased job turnover, reduced patient satisfaction, and decreased quality of care.21 Addressing BOS in ICU clinicians is key to the promotion of PFCC. Mitigating BOS requires a multifaceted approach beyond the scope of this article. In the context of PFCC, we posit the overarching theme of humanization of the ICU should apply to patients, families, and clinicians. We need to value and respect the humanity of our health-care workers if we are to foster a humanized environment for patients and families. A recent consensus document to advance the practice of respect in health-care emphasizes support for health-care professionals.46 However, implementation of programs to monitor and improve the practice of respect could have unintended consequences, such as increasing clinician workload, thereby increasing risk of burnout. Thus, interventions to humanize the ICU must be carefully designed and assessed to ultimately yield the intended effect of improving the ICU environment for all.

SUMMARY

PFCC is integral to high-quality health care and has benefits for patients, families, and clinicians. The highly technical nature of critical care puts patients and families at risk of dehumanization and renders the delivery of PFCC challenging. Deliberate attention to respectful and humanizing interactions with patients, families, and clinicians is essential for successful PFCC in the ICU. Current PFCC efforts focus on patients’ personhood, patient-centered and family-centered communication, and interventions to improve family presence, support, and participation. It is imperative that we study how health-care disparities influence PFCC and, furthermore, explore how PFCC can promote health equity. Optimal PFCC requires authentic engagement with patients and families of diverse backgrounds and experiences to inform quality improvement and research initiatives. Finally, we must work together to create a humanistic ICU environment not just for our patients but for ourselves.

CLINICS CARE POINTS.

  • Patient-centered and family-centered care (PFCC) in the ICU is easy to endorse but can be difficult to actualize in the highly technical critical care environment.

  • Respecting the dignity and humanity of all persons in the ICU, including patients, families, and ICU team members, is the core practice of PFCC.

  • Behavioral interventions can help promote dignity and respect in ICU environments and include tools that affirm patients’ personhood, support patient- and family-centered communication, and increase family presence and participation in care.

KEY POINTS.

  • Patient-centered and family-centered care (PFCC) is challenging to operationalize in the intensive care unit (ICU) environment.

  • The foundation of PFCC is respect for the dignity and humanity of all persons.

  • PFCC practices include affirmation of patients’ personhood, patient-centered and family-centered communication, and interventions to improve family presence, support, and participation in care.

  • Optimal PFCC requires continued efforts to address health-care disparities, encourage authentic patient and family engagement, and humanize the ICU environment for patients, families, and health-care professionals.

DISCLOSURE STATEMENT AND FUNDING SOURCES

J.M. Kruser’s time was supported, in part, by NIH/NHLBI grant K23HL146890. J.M. Kruser’s spouse receives honoraria for lectures and speakers bureaus from Astra Zeneca. No other authors report any funding or disclosures.

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