Palliative Medicine and Family Support in the ICU

Find more palliative care resources, including ICU Issues & Answers brochures, iCritical Care Podcasts, and publications, at www.learnicu.org.

Christine Toevs, MD*
Carilion Clinic
Roanoke, Virginia, USA

Phyllis Whitehead, CNS*
Carilion Clinic
Roanoke, Virginia, USA

Palliative medicine and intensive care medicine may seem to be in direct contradiction. The intensive care unit (ICU) is a high-intensity, high-volume challenging environment for patients, families, nurses, intensivists and other critical care professionals. The overall mortality rate for patients admitted to the ICU is approximately 30%.1 Intensivists spend a considerable part of their jobs overseeing events at the end of life, but many families believe that the ICU team does not do a very good job managing these situations.2 When family dynamics play a role in these conversations, intensivists often do not have the resources to assist the families through the grief and bereavement period.

In the growing field of palliative medicine, the primary goal is to prevent and relieve suffering, to improve the quality of life for patients and their families, and to help patients and families with the goals of care.3 Palliative medicine has an increasing role within the ICU in assisting families and patients through communication and complex medical decision making.

Patients come to the ICU extremis. The multiprofessional team does not have the opportunity to meet the family in advance and often does not have time to explain in detail all that is occurring within the ICU. Families often are confused about technologies and expected outcomes; they may receive mixed messages about prognosis and current clinical status.

Creating a multiprofessional palliative care team is a proactive, effective way to ensure families receive quality care during the patient's end of life. Such a team includes physicians from a variety of specialties, including family medicine, trauma/critical care, pediatric hematology/ oncology, and hospital medicine, as well as clinical nurse specialists, nurse practitioners and physician assistants. Social workers, case managers, hospice coordinators, dieticians, chaplains and respiratory therapists also should be included. Each of these members brings a special and unique perspective to the family and the patient. The American Academy of Critical Care Medicine (ACCM) published recommendations for end-of-life care in the ICU in March 2008.2 The guidelines  emphasize patient- and family-centered care and decision making through several mechanisms:

• Giving the family enough information in an appropriate form that meets their cultural, religious and language needs
• Allowing the family enough time to make informed decisions, speaking as a surrogate for the patient
• Focusing on communication and conflict-resolution to reach consensus regarding goals of care

Using a palliative care team is one strategy to improve communication in the ICU and fulfill the recommendations of the ACCM guideline. Palliative medicine provides opportunities for conflict resolution, for goal-setting at the end of life, for advance care planning and for spiritual, cultural and bereavement support.

A frank but supportive conversation about the goals of care is very helpful to the family as they speak for their loved one. Families often come into the ICU with the expectation of complete restoration to health and functional recovery. The media has contributed to creating this perception, especially regarding outcomes of cardiopulmonary resuscitation.4 The ICU team often struggles with communication and conflict, as these expectations cloud surrogate decision making. The palliative care team supports the ICU team in communication with families and in helping to define goals of treatment. By relating and listening to families, a basis for shared decision making is facilitated. Families are then more receptive to the realistic outcomes of the ICU, recognizing that perhaps this treatment may be only a therapeutic trial.

Once the patient leaves the ICU, the palliative care team continues to support the family through the hospitalization and provides continuity across the continuum of care. When the patient qualifies for hospice upon discharge, the team also facilitates this transition. Palliative medicine emphasizes involvement at all stages of treatment, even if the goal is life-prolonging therapy. If the patient’s needs and clinical situation change, the palliative care team is able to work with patients and families to adjust to changes in the goals of care. These transitions are often made easier by the fact that the team already has an established relationship with the family.

The chaplain, clinical nurse specialist and social worker facilitate the patient’s life review while supporting the family's grieving process. Most individuals experience normal grief and bereavement which includes periods of sorrow, numbness, guilt and anger, followed by feelings of acceptance of the loss. Unfortunately for others, the response to the loss is very different. These individuals exhibit extreme lack of trust and anger towards providers and fixate on their own feelings or inability to lose their loved one instead of the patient’s wishes or needs. Risk factors include multiple and/or unresolved grief, lack of support system or friendships, and poor coping mechanisms to life changes. Family members who are at high risk for abnormal bereavement are provided addition care and community resources such as support groups, counseling and other mental health interventions. The palliative care team encourages families to take care of themselves during this very stressful time emphasizing proper sleep and nutrition.

While intensivists do address end-of-life issues within their scope of practice, the palliative care team offers support to the ICU and to the family. Carilion Clinic implemented an in-house palliative medicine program last year, and trauma center and ICU staff were quick to start referrals to the team, as these departments often see the most critically ill or injured patients. However, this new program was not met without resistance. Some nurses were hesitant to call on the palliative care team because they felt as though it meant the patient was marked for death; for some, it always felt as though it was “too soon” for palliative care. Some physicians also showed resistance, but for different reasons – they were reluctant to let go of their cure-focused medical training.

The culture needed to change. Staff needed to understand that it was never “too soon” for palliative care; they needed to make a distinction between palliative and end-of-life care. The palliative care team functions to help families through the decision-making process; it does not exist to make decisions for families. Staff members were invited to join the team in its weekly meeting to discuss referral patients and to join family meetings and consultations. A dialogue was initiated to ensure greater understanding of the palliative care team’s techniques, goals and purpose. Today, when a patient enters the trauma center with serious injuries, the first reaction from most staff is to call the palliative care team to offer added support to the family upon admission.