Important note: This is a general overview of some of the symptoms dying persons may experience at the end of life. Individual experiences are influenced by many factors, including the person’s illness(es) and medications, but there are some physical changes that 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.
Activity level decreases significantly
The person may speak and move less, often sleeping for a greater portion of the day, becoming resistant to movement or activity of any kind. While gentle turning and repositioning will help to alleviate problems such as muscle stiffness and pressure injury to the skin, as death becomes near, the need for repositioning lessens. If the dying person verbalizes discomfort during movement, or you observe signs of pain (such as grimacing) with movement/activity in non-verbal persons, pre-medicating with appropriate pain management will help alleviate discomfort during repositioning. Your healthcare provider can provide instruction on how to do this safely, either by timing their turning and repositioning around their current pain management schedule or by adding additional pain medication to be used as needed.
Interest in surroundings fades
The person 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 some 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.
Desire for food and drink ceases
The person may have little, if any, appetite or thirst and may have problems swallowing, resulting in coughing and choking with any attempt to ingest medications, food, or fluids. Lack of interest in food and fluids is normal and expected. 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. Caregivers can provide comfort care by maintaining good oral hygiene, keeping the mouth and lips moist with damp sponges, and applying lip balm to prevent lips from chapping.
Bowel and bladder changes
Constipation may become more evident, requiring increased use of stool softeners or laxatives to maintain comfort, although these medications should be discontinued if the person has had little to no intake of food or fluid for several days.
Loss of bladder control and functioning can also occur. If incontinence increases discomfort because of breakdown of skin, or if your 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 resulting from urinary retention, and minimize the burden of turning and repositioning during diaper or pad changes.
Body temperature can decrease by a degree or more
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, heart rate, and respiration (breathing) rates 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 the disease progression, they may become more pronounced within the final days or hours before death.
Increases in pain due to progression of disease, worsening of chronic conditions such as arthritis or stiff/inflamed joints, or increase in pressure wounds to skin
While some people will be able to verbally indicate that they are in pain, for non-verbal people, pain, or distress may be evident from signs such as moaning/groaning, resisting movement by stiffening body, grimacing, clenching of fists or teeth, yelling, calling out, agitation, restlessness, or other demonstrations of discomfort. Hospice and palliative care providers are able to prescribe medications in liquid form that are absorbed sublingually (under the tongue or inside of the cheek and absorbed through the mouth) to provide rapid symptom relief.
Skin of the knees, feet, and hands may become purplish, pale, grey, and blotchy or mottled
These changes 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 bed-bound for a significant amount of time or they experience significant loss of weight or muscle wasting as a result of advanced disease progression; however, open wounds that appear very rapidly can also appear at the 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 these 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. Your hospice or healthcare provider will provide guidance on how best to care for wounds and other changes in skin.
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. Your hospice or healthcare provider may recommend medications that can assist with the 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). These periods of apnea will eventually increase from a few seconds to more extended periods during which no breath is taken. This pattern or respirations 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).
Agitation and periods of restlessness
While common and often without an apparent cause, this can be distressing for caregivers to observe. Medications may be helpful for what is medically termed as terminal agitation or terminal restlessness.
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 a coma 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.
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 loved 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.
Source: the HospiceFoundation.org
We hope this information is helpful to you in the important work you do as a family caregiver.
For more resources, subscribe to our free eNewsletter!