The concept of patient- and family-centered end-of-life (EOL) care is difficult to implement in the ICU, where the philosophy of patient care is aggressive and curative.1 Other challenges to providing optimum EOL care in the ICU include fragmentation of care; inconsistent and inadequate communication between healthcare providers and the family or patient; discrepancies in consensus of care goals among the healthcare team members; inconsistency of family meetings; and unrealistic goals and expectations of patients, families, and the healthcare team.2 However, integrating the patient- and family-centered care model in the ICU is essential to change the care for patients at EOL who aren't responding to curative therapy.
What's patient- and family-centered care?
To understand this type of care, let's look briefly at the culture of medicine and past models of care.
The biomedical model guided care from the mid-nineteenth century to about the mid-twentieth century. Physicians were the primary care decision makers and patient care was disease-centered.
The patient-centered model superseded the biomedical model in the 1960s. Physicians addressed the physical and psychosocial needs of patients, and patients became more involved in their care decisions. Families weren't included in the development of the patient plan of care.3 However, family involvement is particularly important for patients in the ICU, as most care decisions for patients at EOL are made by family members or surrogates.4
The patient- and family-centered care model emerged in the late twentieth century, focusing on shared decision making between patients, families, and healthcare providers. In this model, patients and families are involved in the planning, delivery, and evaluation of care, creating a partnership between the healthcare team, patients, and families.1 The patient- and family-centered care model encompasses central elements associated with quality EOL care, including physical comfort and emotional support, dignity and respect during the dying process, shared decision making, identifying and meeting the patient's needs and values, and coordinating care.5
A step toward culture change
One of the first steps in overcoming barriers to providing quality EOL care in the ICU is for clinicians to understand the EOL care philosophy. EOL care focuses on addressing the physical, psychosocial, and spiritual aspects of care for patients and families. Relieving suffering, avoiding unwanted prolongation of life, and maintaining hope, peace, and dignity through the dying process are the goals.6
One way to help overcome EOL care barriers and achieve care goals for dying patients in the ICU is through a family meeting. Participants in the family meeting should include the physician, nurse caring for the patient, social worker, the patient when possible, and surrogate decision makers. An increasing number of facilities have palliative care teams, which, when available, are integral to the decision-making process. The meeting should occur within 72 hours of ICU admission, as early communication decreases conflict and can help avoid unwanted prolongation of the dying process.7 After the initial meeting, family meetings must be consistent in frequency in order to continue to meet the patient's care goals.4,7,8
During the family meeting, the healthcare team must identify the patient's and family's concept of the illness, cultural beliefs, hopes, fears, goals, and care preferences. To develop supportive, realistic care goals, the healthcare team must communicate effectively, listen, keep patients and families informed, and provide comfort to patients and families.9
By recognizing the barriers to EOL care in the ICU and implementing processes to address and overcome them, we can strive to provide optimum patient- and family-centered EOL care. As Dame Cicely Saunders, founder of the modern hospice movement, said, "You matter because you are you, and you matter until the last moment of your life. We will do all we can, not only to help you die peacefully, but to also live until you die."
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