Important Note
 
This is a general overview of some of the symptoms a dying person may experience near the end of life. Individual experiences are influenced by many factors, including the person’s illness(es) and medications, but some changes are common.

For some people, the dying process may last weeks; for others, it may last a few days or hours. As death approaches, you may notice some of the changes listed below.  Because patients start hospice care at different stages of their illness, they may have some or none of these symptoms when they begin hospice care. Patients who are admitted to hospice earlier in their illness may not experience any symptoms for many months.
 

Physical Changes

 

Communication and activity level decreases
 

• Verbal communication and physical activity levels decrease significantly. Your loved one may sleep for much longer periods of time and resist movement or activity of any kind.
• Gentle turning and repositioning will help to alleviate muscle stiffness and pressure injuries to the skin, but the need for repositioning lessens.
• If your loved one verbalizes discomfort during movement, or you observe signs of pain (such as grimacing) with movement, talk with the hospice team about how to safely turn and reposition around their current pain management schedule or how to add pain medication as needed. 

 

Appetite decreases

 

• A lack of interest in food and fluids is normal and expected as your loved one’s desire for food and drink ceases.
• Problems with swallowing can result in coughing and choking with any attempt to ingest medications, food, or fluids.
• Food and fluids should never be pushed, as this can increase risk for choking, pneumonia, and abdominal discomfort as the gastrointestinal system slows down along with the rest of the body’s systems.
• The hospice team can prescribe medications that are absorbed under the tongue, through the skin, or via subcutaneous injection to provide rapid symptom relief.
• You can provide comfort care by maintaining good oral hygiene, keeping your loved one’s mouth and lips moist with damp sponges, and applying lip balm to prevent lips from chapping.

 

Bowel and bladder changes

 

• As your loved one’s appetite for food and fluids cease, constipation may become more evident, requiring increased use of stool softeners or laxatives to maintain comfort. These medications should be discontinued if the person has had little to no intake of food or fluid for several days.
• A loss of bladder control and functioning can also occur. If incontinence increases discomfort because of breakdown of skin, or if the healthcare provider suspects urine is being retained in the bladder for any reason, a foley catheter may be recommended. A foley catheter is painless when in place and will help to protect the surrounding skin, provide possible relief from abdominal pain/pressure due to urinary retention, and minimize the burden of turning and repositioning during diaper or pad changes.
   

Body temperature changes

 

• Body temperature can decrease by a degree or more, and the person’s hand or skin may start to feel cold to the touch.
• Heating pads are not recommended to warm hands or feet that may feel cold to the touch due to the significant risk for skin burns on thin, fragile skin. Simply adding a warm blanket may be comforting.
• Some people may develop a mild fever or the skin of their torso and their face may feel warm to the touch and appear flushed. A lukewarm washcloth on the forehead may provide comfort.

 

Blood pressure and heart rate gradually decrease

 

• Near the end of life, vital signs like blood pressure and heart rate can fluctuate and become irregular. This is not necessarily a sign that something is wrong, although these changes should be reported to your hospice nurse or other healthcare provider.
• While these symptoms can happen at any stage of disease progression, they may become more pronounced within the final days or hours before death.

 

Skin changes

 

• The skin of the knees, feet, buttocks, ears, and hands may become purplish, pale, grey, and blotchy or mottled and usually signal that death will occur within days to hours.
• Pressure wounds can be chronic and develop at any stage of terminal illness, particularly if the person becomes very debilitated and is bedbound for a significant amount of time or they experience significant loss of weight or muscle wasting as a result of advanced disease progression.
• Open wounds that appear very rapidly can also appear at end of life. The skin is an organ, and like other organs, it begins to stop functioning near life’s end.
• The goal of care for wounds is to utilize pain medication to keep the person comfortable, attempt to prevent the wounds from worsening, and to keep them clean and free from infection, rather than attempting to heal them with aggressive (and possibly painful) invasive intervention or treatment. The hospice team will provide guidance on how best to care for wounds and other changes in skin.

 

Pain intensifies

 

• Pain may increase due to progression of disease, worsening of chronic conditions, such as arthritis or stiff/inflamed joints, or increase in pressure wounds to the skin.
• Some people will be able to verbally indicate that they are in pain, but for non-verbal people, pain or distress may be evident by moaning or groaning; resisting movement by stiffening body, grimacing, clenching of fists or teeth; yelling or calling out; agitation, restlessness, or other demonstrations of discomfort.

 
 

Breathing Changes

 

Respiration (breathing) rates gradually decrease

 

• Near the end of life, the breathing rate can fluctuate and become irregular. Periods of rapid breathing, and no breathing for brief periods of time, coughing or noisy breaths, or increasingly shallow respirations, especially in final hours or days of life.
• Turning, repositioning, or elevating the head/shoulders will sometimes alleviate noisy breathing, particularly if secretions are retained in the mouth if the patient is unable to swallow when close to death.
• This breathing is often distressing to caregivers, but it does not indicate pain or suffering. Sometimes a vaporizer can ease breathing. The hospice team may recommend medications that can assist with management of excessive secretions.

 

Other changes in breathing

 

• A dying person’s breathing will change from a normal rate and rhythm to a new pattern, where you may observe several rapid breaths followed by a period of no breathing (apnea). This pattern is known as Cheyne-Stokes breathing, named for the person who first described it, and usually indicates that death is very close (minutes to hours).
• These periods of apnea will eventually increase from a few seconds to more extended periods during which no breath is taken.

 

Cognitive Changes

 

Interest in surroundings fades

 

• Your loved one may not respond to questions or may show little interest in previously enjoyable activities or contact with family members, caregivers, or friends. This phenomenon has been described as “detaching” as the dying person withdraws, bit by bit, from life.
• Keeping the person’s environment as calm peaceful as possible by dimming lights, softly playing the person’s favorite music, and gentle touch and/or kind words, can be soothing as the dying person transitions.
• Caregivers, family, and healthcare providers should always act as if the dying person is aware of what is going on and is able to hear and understand voices. Hearing is one of the last senses to lapse before death.

 

Agitation and restlessness

 

• Agitation and periods of restlessness, medically known as terminal agitation or terminal restlessness, are common and often without an apparent cause.
• This can be distressing for caregivers, and the hospice team can help with medication to ease the symptoms. 

 

Illusions, Hallucinations, Delusions

It is not unusual for dying persons to experience sensory changes that cause misperceptions categorized as illusions, hallucinations, or delusions:
 

• Illusions - They may misperceive a sound or get confused about an object in the room. They might hear the wind blow but think someone is crying, or they may see the lamp in the corner and think the lamp is a person.

 

• Hallucinations – They may hear voices that you cannot hear, see things that you cannot see, or feel things that you are unable to touch or feel. These hallucinations may be frightening or comforting to the dying person depending on their content.

 

• Delusions of persecution and delusions of grandeur – They may confuse reality and think others are trying to hurt them or cause them harm. They may believe that they can accomplish things that are not possible.

 

• Near death awareness – They may report awareness of their imminent death and express that they will soon be able to see their God or other religious figure or see beloved friends and relatives who have preceded them in death. It is not uncommon for dying people to speak about preparing to take a trip, traveling, or activities related to travel, such as getting on a plane or packing a bag. Many dying persons find this awareness comforting, particularly the prospect of reunification.

 
These sensory changes can wax and wane throughout the day and often become more pronounced at night. There are medications that can help alleviate symptoms that appear to be causing distress symptoms. Your hospice provider will decide whether medication is needed for these complex symptoms.
 
Consciousness fades
 

• Often before death, people will lapse into an unconscious or coma-like state and become completely unresponsive. This is a very deep state of unconsciousness in which a person cannot be aroused, will not open their eyes, or will be unable to communicate or respond to touch.
• Persons in this state may still hear what is said even when they no longer respond. It should be assumed that even while a person may not have the capacity to speak, they may continue to have the ability to feel pain, or distress, even if they are unable to verbalize those feelings. 

 

This summary, originally written for HFA by William Lamers, MD, has been revised and updated several times, most recently in 2024 by Angela Novas, MSN, RN, CRNP, ACHPN, hospice and palliative care consultant for HFA.

 

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