“I think that I will never quite shake that ‘memory’ of being wretched, physically restrained, unable to speak, and at the mercy of that band of sadists. Of course, the fact that one has this ‘memory’ of people who so selflessly fought night and day to save one’s life is its own kind of embarrassment.”

– ICU patient, looking back on her ICU stay through the lens of delirium.

What is it?

Loss of respect and dignity occurs in the intensive care unit when healthcare providers, despite their best intentions, lose sight of the person in the bed as a human being with hopes, fears, and a life outside the ICU. It affects families when their connection to the patient and contributions to care are treated as less important than those of the ICU staff. ICU providers can also experience loss of respect and dignity when co-workers, visitors, or their organization create a hostile environment.

Who is at risk?

Everyone who has worn a hospital gown knows the feeling of being exposed and vulnerable in a way they would not accept in their regular life. Add to that being in a room with glass walls and curtains, and a seemingly infinite number of clinicians, housekeeping staff, friends and family coming and going and that feeling of insecurity deepens.

A patient who is unconscious may hear others talking around them as if they were not present, deepening their sense of isolation and loss. Families are experiencing major upheaval while in an unfamiliar environment surrounded by strangers.

The impact

Loss of respect and dignity, while not detectable in a blood test or MRI scan, is a harm with deep and lasting impact. Due to the nature of traditional ICU care, it may also be one of the most prevalent harms experienced by ICU patients and families. ICU survivors often struggle with feelings of depression, anxiety, and posttraumatic stress as a result of their experience. Up to one third of ICU family members experience these symptoms for months after the ICU stay.2,3 Physicians and nurses may have signs of burnout and posttraumatic stress related to their work. What is it about the ICU environment be changed to support psychological well-being?

Preventing Loss of Respect and Dignity in 6 Steps

o1 Clinical staff support
o1 Family presence at the bedside
o1 Participation in care activities

o1 Pastoral care and social work consultation
o1 Cultural competence
o1 Organizational change

patientcircle

Check out the American College of Critical Care Medicine guidelines for supporting families in the ICU.

Learn more about building trust with patients and families in the ICU.

Going deeper

Clinical staff support

Every day (or night) in the ICU, providers experience situations of extraordinary suffering which they may be powerless to prevent or mitigate. Without opportunities to build resilience, ICU clinical staff are at risk for states such as burnout (emotional exhaustion, depersonalization, and feelings of failure), moral distress, and secondary trauma which are directly in conflict with providing care that promotes dignity and respect. Organizational support for clinical staff may involve structured assistance programs, informal debriefings, educational activities, and promotion of self-care strategies. Evidence-based practices such as mindfulness and reflective writing can help staff be more aware of their reactions and to make sense of what they experience.

American College of Critical Care Medicine consensus guidelines for family support recommend that “a mechanism is created whereby all staff members may request a debriefing to voice concerns with the treatment plan, decompress, vent feelings, or grieve.”


Family presence at the bedside

When a person becomes critically ill, the health care team appropriately turns a magnifying glass on what is wrong with them. All of the things that were sources of meaning and strength in a patient’s daily life may be left behind at the ICU doors. Family presence at the bedside reunites the vulnerable ICU patient with these supports and helps the healthcare team come to know and treat the patient as a human being. When patients, families, and ICU providers see each other working together, trust grows and the value of each person can be acknowledged.

The American Association of Critical Care Nurses recommends that ICUs provide open access for the patient’s primary support person, as this has been associated with decreased anxiety, confusion, and length of stay and with improvements in quality and safety. Technology such as Skype, FaceTime, and CaringBridge can help connect patients with distant friends and family.


Participation in care activities

When families describe their contributions to ICU care, among the common roles are protector, historian and caregiver.9 The best fit is going to be different family by family and may vary among family members and across the ICU stay. Changes in a patient’s condition may shift a family member’s focus from one type of role to another – a historian one day, a coach the next. In assuming new roles as ICU caregivers, friends and family should receive teaching and encouragement from staff on how to assist their loved one with familiar tasks such as reading and walking. This facilitated sensemaking process may help prevent the cluster of cognitive and psychological sequelae that has been described in the literature as postintensive care syndrome-family (PICS-F).

Learn more about the different ways family members may contribute in the ICU »


Pastoral Care and Social Work Consultation

Patients and families in the ICU often feel a heightened need for spiritual support, whether they belong to a particular religious tradition or not. Similarly, they may feel weighed down by financial or logistical concerns about hospitalization. The American College of Critical Care Medicine and AHRQ both recognize social work and pastoral care as critical components of quality ICU care and recommend that they be offered to all patients and their families. Family members identify “information about spiritual services” and “time with a counselor or psychologist” as the interventions that would be most helpful in to their well being while in the ICU.


Cultural Competence

The ICU itself is a culture, with its own language, customs, and beliefs. The providers who work there are steeped in it, but for most patients and families it is difficult to know what to say and do. ICU staff and those they serve may deal with significant cultural differences which can be barriers to respect and dignity or sources of growth and connection for all involved. Cultural competence describes the set of skills health care providers require in order to match their care and the way it is delivered to the needs and expectations of individual patients and families. In the ICU, modesty, cleanliness, family structures, and the use of strong pain and sleeping medicines are areas of frequent concern.

One of the risk factors for psychological harm to ICU families is a gap between their preferred ways of making decisions and the role assigned to them by the healthcare team. Culture may be a factor in these preferences; providers should assess this and engage families appropriately. The American College of Critical Care Medicine advocates for cultural competence of healthcare professionals, particularly in the domain of decision making.


Organizational Change

One way to transform the ICU is patient by patient, family by family, and provider by provider – a process which writer and physician Atul Gawande describes as “Slow Ideas.” Changes in policy, processes, training, design make this transformation both sustainable and measurable.

American College of Critical Care Medicine consensus guidelines for family support in the ICU contain the following recommendations:

  1. Nursing and physician staff assigned to each patient are as consistent as possible… the number of health professionals who provide information is kept to a minimum.
  2. Open visitation in the adult intensive care environment allows flexibility for patients and families and is determined on a case-by-case basis.
  3. The patient, family, and nurse determine the visitation schedule collectively; the schedule takes into account the best interest of the patient.
  4. Pets that are clean and properly immunized are not restricted from visiting the ICU. Guidelines are created to provide animal-assisted therapy and animal-assisted activities for patients.
  5. Improve patient confidentiality, privacy, and social support by building ICUs with single-bed rooms that include space for family.

Organizational constraints on respect and dignity impact not only ICU patients and families, but clinical staff as well. Culture, policies, and procedures may inadequately support staff in their work and therefore leave them vulnerable to moral distress and similar adverse outcomes. Hospital management can look to frameworks such as the American Association of Critical Care Nurses 4 A’s and Healthy Work Environments to engage the interdisciplinary team, develop codes of conduct and communication, and apply root cause analysis to distressing situations.


Next: VAHI

The key things to know about preventing ventillator-associated harms in the ICU.

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