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“Most people focus on very small hopes, and they expect the patient to survive, go home and be the same person he was before,” Dr. Goitein said. “But a long, difficult battle with illness can result in psychiatric as well as physical disability. It’s more stressful than people estimate.”
For patients who needed more than two days of mechanical ventilation in the I.C.U., family caregivers typically spend an average of more than five hours a day giving care during the first half-year after hospital discharge, she said. How well the family copes often depends on how carefully they plan and prepare before the patient comes home. Are there grab bars in the bathroom? Will a walker or wheelchair fit through doorways? Can the patient communicate readily with the caregiver?
After a long stay in an I.C.U., it’s not uncommon for patients to experience what doctors call “post-intensive care syndrome,” or PICS. “Overall, about half of survivors will have at least one cognitive, psychiatric or physical problem that persists for weeks, months or even years after discharge,” Dr. Goitein wrote. These may include problems with memory, concentration and problem-solving. Emotional consequences like depression, anxiety, post-traumatic stress disorder and sleep disturbances sometimes persist for years. Overcoming I.C.U.-induced physical weakness can take several years, and regaining independence in activities of daily living, like getting dressed and preparing meals, can require fierce determination and infinite patience on the part of both patient and caregiver.
An excellent resource for patients and their families following I.C.U. care is Thrive, an online initiative of the Society for Critical Care Medicine. The site maintains a partial list of clinics that provide specialized care for patients after an I.C.U. stay.
It’s also important for families to know when “enough is enough,” Dr. Goitein said. For patients who’ve been on prolonged life support in the I.C.U., it can be very challenging for families to come to terms with their failure to improve and inability to wean them off the machines keeping them technically alive.
Ideally, well before a life-threatening crisis, patients will have completed an advance directive and assigned a trusted health care proxy or agent, who has a clear understanding of their wishes and can speak for them when they cannot speak for themselves. What are the patients’ values? What makes their life meaningful? What level of disability would they consider intolerable?
The proxy’s job, Dr. Goitein said, “is to put their own desires and beliefs aside and choose what the patient would have wanted for himself,” in effect respecting the autonomy of a terminally ill person who is no longer able to communicate their wishes. When family members disagree, she said, discussion with the doctor in charge may facilitate a decision.