February 6, 2007 — The American College of Critical Care Medicine (ACCM) Task Force has issued clinical practice guidelines for support of patients and their families in the adult, pediatric, or neonatal intensive care unit (ICU). The new recommendations are published in the February issue of Critical Care Medicine.

"In 2001, the Institute of Medicine [IOM] strongly recommended that healthcare delivery systems become patient-centered rather than clinician- or disease-centered, with treatment recommendations and decision making tailored to patients' preferences and beliefs," write Judy E. Davidson, RN, FCCM, and colleagues, of the ACCM Task Force. "Nowhere is the need for patient-centered care greater than in the intensive care unit (ICU), where patient and family involvement can profoundly influence clinical decision making and patient outcomes."

The IOM's patient-centered model incorporates the following features:

• Patients and families are kept informed and actively involved in medical decision making and self-management.
  
  
• Patient care is coordinated and integrated across groups of healthcare providers.
  
  
• Healthcare delivery systems provide for the physical comfort and emotional support of patients and family members.
  
  
• Healthcare providers have a clear understanding of patients' concepts of illness and their cultural beliefs.
  
  
• Healthcare providers understand and apply principles of disease prevention and behavioral change appropriate for diverse populations.

Patients in the ICU are often unable to communicate with healthcare providers or participate in their own care decisions, mandating that responsibility be assumed by others, usually immediate family members, to function as surrogate decision makers.

"Patients and families are expressing a desire for a larger role in healthcare decision making and are asking providers to do a better job of responding to patient and family needs," the authors write. "Despite these concerns, families and other surrogates often feel uninformed and disenfranchised from clinical decision making and day-to-day care of loved ones in the ICU. For the patient-centered care model to be realized fully in the ICU, family members and surrogate decision makers must become active partners in multiprofessional decision making and care."

These are the first published guidelines defining standards for incorporating families into decision making and care for ICU patients, developed in response to the request of the ACCM of the Society of Critical Care Medicine (SCCM), in an attempt to define evidence-based best practices for support of families in the delivery of patient-centered care in the ICU.

The ACCM and SCCM convened a multidisciplinary task force of experts in critical care practice from their membership, including representation from adult, pediatric, and neonatal ICUs. After searching the Cochrane library, Cinahl, and MEDLINE for articles published between 1980 and 2003, the panel reviewed the published literature, including more than 300 related studies.

The level of evidence in most cases was at Cochrane level 4 or 5, indicating the need for further research. When evidence was not available or of a low level, consensus was derived from expert opinion.

Topics reviewed included decision making, family coping, staff stress related to family interactions, cultural support, spiritual/religious support, family visitation, family presence on rounds, family presence at resuscitation, family environment of care, and palliative care. Each section draft was reviewed by the group and debated to reach consensus, and the draft document was reviewed by a committee of the Board of Regents of the ACCM, subjected to steering committee approval, approved by the SCCM Council and was again subjected to peer review by this journal.

In total, 43 recommendations were presented, including:

• Endorsement of a shared decision-making model rather than unilateral decision making by the clinician, which might decrease family stress and help families to cope.
  
  
• Early and repeated care conferencing to reduce family stress and improve consistency and cultural sensitivity of communication, using terms that the family can understand. Improved communication may also increase the use of advanced directives.
  
  
• Honoring culturally appropriate requests for truth telling and informed refusal.
  
  
• Spiritual support, encouraging and respecting prayer and adherence to cultural traditions, which help many patients and families to cope with illness, death, and dying. In addition to formal spiritual counseling by a chaplaincy service, educated members of the ICU staff might help to accommodate the spiritual traditions and cultural needs of patients and families.
  
  
• Education and debriefing of staff to minimize the effect of family interactions on staff health.
  
  
• Family presence at both rounds and resuscitation, which might help families cope with the death of a loved one in the ICU.
  
  
• Open, flexible visitation.
  
  
• Way-finding and family-friendly signage.
  
  
• Waiting rooms that are close to patient rooms and that include family-friendly amenities.
  
  
• Family support before, during, and after a death.
  
  
• Symptom management and family involvement in palliative care processes to improve ICU care.

"Including and embracing the family as an integral part of the multiple-professional ICU team are essential for the timely restoration of health or optimization of the dying process for critically ill patients," the authors conclude. "Support for the psychological and spiritual health of the family is an essential component of patient-centered care for the critically ill."

Some of the authors have disclosed financial relationships with Eli Lilly, Edwards Lifesciences, Philips Medical Systems, Chiron, and/or Biosite.

Crit Care Med. 2007;35:605-622.

Clinical Context

There are no published guidelines defining standards for incorporating families into decision making and care for ICU patients, and yet the IOM has strongly recommended the principle of healthcare systems using a patient-centered rather than a clinician- or disease-centered approach tailored to the patient's culture and preferences. In the IOM model, care is coordinated across integrated systems, and families and patients are kept informed, and both physical and emotional needs are considered.

These guidelines were released by an ACCM Task Force using the IOM principles, and organized into subheadings of decision making, family coping, staff stress, cultural support, spiritual/religious support, family visitation and environment of care, family presence on rounds and at resuscitation, and palliative care. The task force noted that most of the evidence from more than 300 studies examined was based on surveys or expert opinion rather than rigorous trials and suggested that more research was needed in the future.

Study Highlights

• A comprehensive literature search was conducted in the Cochrane library, MEDLINE, and Cinahl for articles published from 1983 to 2003. Cochrane methodology was used to appraise level of evidence applying equal emphasis to adult, pediatric, and neonatal environments.
• Family was defined by the patients as individuals who provide support to them and with whom the patients had a significant relationship.
• The Clinical Practice Guidelines for Quality Care published in 2004 by the National Consensus Project was reviewed and endorsed in its entirety by the task force.
• Section drafts for the guidelines were completed and reviewed by each subgroup until consensus was reached, and the entire document was approved by the SCCM Council and then peer-reviewed for publication.
• Family coping: Multiprofessional ICU staff should receive training in meeting family stress needs, and families should be encouraged to provide as much direct care to patients as possible with ample information provided.
• Staff stress: The team should be kept informed of treatment goals and give consistent messages to families with a mechanism for staff to decompress and debrief or grieve even when a "good death" occurs.
• Cultural support: Where possible, the providers should be matched to the patients' and families' culture. Healthcare providers should receive training to provide culturally competent care with an emphasis on addressing truth telling, cultural norms, and respect for patient decision making. Frequent communication within the multiprofessional care team and with families is recommended.
• Spiritual and religious support: The healthcare team should address patient and family spiritual needs regularly and include chaplains and social workers in the team. If a patient requests that a provider prays with him or her and the provider feels comfortable then the request should be honored.
• Family visitation: Open visitation is encouraged, to allow flexibility and improved patient well-being, and previsit education may be provided to families. Pets that are properly immunized should be allowed into the ICU, and guidelines should be developed for pet-assisted therapy.
• Family environment of care: The environment should respect privacy and improve social support using single-bed rooms, natural lighting, and access to nature. Way-finding systems for families should be developed to reduce stress in the environment.
• Family presence on rounds and resuscitations: Families should be given opportunities to attend rounds and ask questions relevant to the patient's care. A structured process should be in place to debrief and support family members after a witnessed resuscitation. Allowing families to be present during resuscitation might help them cope with the death of a loved one.
• Palliative care: Assessments should be made of the family's understanding of prognosis and treatment plan, and the family should be educated about signs and symptoms of approaching death in a developmentally and culturally appropriate manner. Bereavement services and follow-up care should be made available after the death of a patient. Training in palliative care should be a formal part of critical care education.

Pearls for Practice

• Categories of care addressed by the ACCM in its family support guidelines include decision making, family coping, staff stress, cultural support, spiritual/religious support, family visitation and environment of care, family presence on rounds and at resuscitation, and palliative care.
• The principles adopted by the ACCM are that of patient- and family-centered multiprofessional team care with an emphasis on family participation, shared decision making, culturally competent care, and supportive physical and emotional environments of care.