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Caregivers of terminally ill patients often turn to health professionals to learn what to expect in the final weeks, days, and hours of life. Regardless of the underlying cause, many signs and symptoms are similar during this period.

Addressing families’ concerns proactively can ease discomfort and anxiety and help prevent crises that lead to unnecessary ICU admissions. Below are the key topics to discuss with caregivers as death approaches a patient.

Sleep

Patients spend increasing amounts of time sleeping and may struggle to keep their eyes open because of fatigue and metabolic changes related to the dying process. Families should make the most of the time when the patient is alert, even at night, and avoid waking them.

Restlessness

Restlessness or agitation may arise during periods of wakefulness, making it difficult for patients to return to sleep. These symptoms, which are sometimes associated with mental confusion, may reflect real distress resulting from metabolic changes and the perception of loss of autonomy.

Speaking calmly, acknowledging patients’ concerns, and suggesting comfort measures can help. If these steps are ineffective, neuroleptics or sedatives may be prescribed to aid in rest.

Disorientation and Hallucinations

As death approaches, patients often become progressively disoriented in terms of time and place, even with regard to close relatives and caregivers. Hallucinations may occur, particularly in long-standing older adults. Patients might report seeing deceased loved ones or describe comforting visions or memories, which can distress families. In these moments, caregivers must not correct or rationalize their experiences. Instead, they should encourage patients to share their feelings and explore their emotional states.

Social Withdrawal

It is common for patients to withdraw socially as their condition worsens. They may lose interest in activities such as reading newspapers, listening to music, watching television, visiting friends, and seeing family. Although difficult to witness, caregivers can offer a gentle and unobtrusive presence by talking softly or simply holding the patient’s hand.

Nutrition and Hydration

Interest in eating and drinking declines gradually and can vary from one day to the next. Patients tend to need less food and liquids in response to metabolic changes during the end-of-life process. At this stage, eating no longer has a nutritional purpose and does not influence energy or prognosis, making meals a gesture of affection. It is recommended to offer only those foods that the patient prefers. Do not force-feed, as it may cause discomfort. Small ice chips or frozen fruit juice pops can soothe the mouth. When swallowing becomes impossible, oral intake should be stopped to avoid aspiration.

Incontinence and Urinary Disturbances

Loss of urinary and/or bowel control is common at the end of life and may affect a patient’s dignity and comfort. Keep the patient clean by changing soiled clothes and sheets regularly and using diapers or protective clothing to ensure proper hygiene and prevent skin irritation or infections. If a patient cannot urinate, a catheter may be required. Advise caregivers that urine output decreases and darkens as death approaches.

Reduced Senses

Vision and hearing often decline days and hours before death, sometimes with increased sensitivity to light and sound. Keep the room dim and minimize sudden noise to reduce discomfort and disorientation. Do not assume that the patient cannot hear; hearing is typically the last sense to go.

Physical Signs

An increase in temperature is common during the final days and hours. Causes include inflammation from tumors, infections, or metabolic changes. A temperature above 38 °C does not always indicate discomfort or the need for medication. Caregivers can apply a cool, damp cloth to the forehead to help lower the temperature and at the same time feel helpful.

In the hours before death, the skin may redden, become moist, and feel warm if the body temperature rises. Conversely, extremities, such as the hands, arms, feet, and legs, may cool, accompanied by cyanosis and mottling of the skin. Cooling of the body is a natural process that occurs when circulation slows and vital organs begin to stop functioning. Sometimes, the skin on the face takes on a yellowish hue with paleness that is more pronounced around the mouth.

Breathing patterns also change as bodily functions slow. Breaths may become shallow and irregular, and the accessory muscles may engage. The interval between breaths can lengthen, and patients may take several quick, shallow breaths, followed by a long pause. These cycles deepen over time and can be distressing for families.

As consciousness fades, patients lose the ability to swallow or clear their oral secretions. Air passes through these accumulated secretions, resulting in noisy ventilation in approximately half the terminally ill patients. Families and caregivers may find this sound unsettling, fearing the patient is choking. Changing the patient’s position or administering medication for dry secretions can reduce, and sometimes relieve, noise.

This story was translated from Medscape’s Portuguese edition.