A Guide To Care After Hospital Discharge

A full recovery after a stay in a hospital's intensive care unit (ICU) can be difficult for older patients. Just slightly more than half of adults ages 70 and older regain their pre-ICU function within six months according to researchers from Yale University School of Medicine. For other patients, it can take as long as 18 months to recover fully. And most patients will need ongoing support from caregivers, usually a spouse or other family member.

 The transition from ICU to home can be a difficult one for the patient and for loved ones, but knowing what to expect and how to prepare for the potential challenges ahead can help ease the burden.

LIFE AFTER ICU DISCHARGE

The average ICU stay lasts about four days. Depending on the patient's condition, the length of stay can be longer, and the experience can be traumatic. A patient may be sedated, receive invasive treatment such as intubation (a breathing tube and mechanical ventilation), be unable to communicate, or sense an overall loss of control. Oftentimes, he or she will experience vivid dreams, nightmares, or hallucinations. It's no surprise, then, that the recovery process after surviving a critical illness is fraught with physical and psychological challenges.

After being moved from the ICU to a hospital room, a patient may feel anxious, depressed, confused, or apprehensive, and those thoughts continue once he or she returns home. A feeling of profound muscle weakness and fatigue, called intensive care unit-acquired weakness, is common and can last longer than a year. Upon arriving home, the patient may realize that he or she can't perform simple activities like taking a walk or climbing the stairs without help, adding to his or her distress.

The symptoms may be part of a set of physical, cognitive, and psychological problems called post-intensive care syndrome, or PICS. It's estimated that more than half of all ICU survivors will suffer some symptoms of PICS, which include:

* Depression

* Anxiety

* Post-traumatic stress disorder (PTSD)

* Intensive care unit-acquired weakness

* Cognitive impairment, mainly affecting memory, focus, and problem-solving

* Sleep disturbances

* Reduced mobility

* Sexual dysfunction

PICS is more likely to develop in older adults whose ICU stay was longer than 48 hours and who were sedated with benzodiazepine or anticholinergic drugs; were intubated; or had a bloodstream infection (sepsis), acute respiratory distress syndrome, or an episode of delirium while in the ICU. Pre-existing conditions, such as dementia, psychiatric illness, and other nervous system disorders, also increase PICS risk. PICS is treated with drug therapy, psychotherapy, or both, but some symptoms can persist for years.

The Yale study pointed to several factors that were likely to contribute to a poorer six-month outcome. Severe vision and hearing impairments were associated with poor functional recovery, as were frailty and a greater than 10-pound weight loss. But a higher body mass index and prior independence in performing daily activities like getting dressed or bathing were associated with functional recovery.

WHAT CAREGIVERS CAN DO

Family members, particularly spouses, play a significant role in post-intensive care rehab. Ideally, a caregiver's role should begin before the patient is discharged from the ICU. If your loved one is in the ICU:

* Keep a journal. It's common for ICU patients to be unable to recall their stay, which can be distressing. An ICU diary that describes the patient's stay and can help him or her understand what happened has been shown in studies to help relieve PTSD symptoms upon later reading.

* Visit often. Your regular visits can keep the patient engaged and possibly improve outcome. Talk or read to your loved one, even if he or she isn't awake. Bring photographs or a comfortable robe to remind him or her of home. Make sure your loved one has any needed eyeglasses or hearing aid nearby.

* Encourage movement. As soon as feasible, the ICU staff will begin physical therapy, such as having the patient sit up in bed, progressing to standing and walking.

* Meet regularly with the doctor. Get information on the prognosis and potential physical and emotional effects. Develop a long-term convalescence and rehabilitation plan with the doctor and ask for referrals to social services and support groups. Communication should be open between ICU staff and the people who will assume responsibility for continued patient care.

* Get a "navigator". Some hospitals hire navigators, or care coordinators who direct patients to needed health services and help them cut through healthcare's red tape.

THE CAREGIVER BURDEN

A loved one's critical illness can take a mental toll on family members, leading to a condition similar to post-intensive care syndrome, called post-intensive care syndrome-family, or PICS-F. The syndrome manifests itself most commonly as depression, anxiety, sleep deprivation, and post-traumatic stress disorder. Symptoms can appear even before your loved one is discharged, and they can last for months to years. Loved ones underestimate the burden they will face as caregivers. This problem is particularly acute when treating a family member with PICS because the onset is so unexpected.