End of Life - Addressing Signs And Symptoms

06/10/19 ·National Institute on Aging

A sign is something a caregiver can observe, such as a bed sore or someone struggling to breathe. A symptom is something a patient experiences that may not be visible to others, such as pain or fatigue. It is important to look for both signs and symptoms of physical discomfort in someone who is near the end of life. 

Examples include 

  •  pain 
  • breathing problems 
  • digestive problems
  • skin problems
  • feeling too hot or cold
  • fatigue
  • distress
  • dementia 
  • delirium

Each of the signs and symptoms listed above can be reduced or relieved with treatments that can restore comfort.

Breathing Problems

It is common for someone at the end of life to feel short of breath or have trouble breathing. Health care providers may use the word dyspnea (disp-NEE-uh), which is the medical term for breathing problems. 

Struggling to take the next breath can make it hard for someone to talk or interact with others. Some simple ways to make it easier to breathe include

  •  raising the head of a hospital bed or using pillows to raise the person's upper body 
  • opening a window
  • adding moisture to the air with a vaporizer
  • running a fan to circulate air, especially blowing the fan towards the person’s face
  • turning a person to rest on one side.

Sometimes doctors will prescribe morphine or other opioid medications to relieve the sensation of shortness of breath. There is good evidence to support this approach.

As people near death, their breathing may become noisier. This is caused by fluids collecting in the throat and large breathing tubes of the lungs, or by the throat muscles relaxing. Sometimes referred to as a “death rattle,” there may be medicine that can help. The most effective way to help the person who is dying is by changing the position of the body and chest every couple of hours or more frequently. Not all noisy breathing is a death rattle. 

Digestive Problems

People at the end of life sometimes suffer from nausea, vomiting, constipation, and loss of appetite. The causes for such symptoms are varied, so talk to a doctor or nurse right away. There are medicines that can control nausea and vomiting or relieve constipation.

Changes in Appetite

Losing one’s appetite is a common and normal part of dying -- eating near the end of life may actually cause more discomfort than not eating. A conscious decision to give up food and/or water can be part of a person’s acceptance that death is near. 

If someone near the end of life wants to eat, offer small amounts of his or her favorite foods. Frequent, smaller portions of food may have greater appeal than large meals. If the person chooses not to eat despite previously asking for a specific food or meal, do not fret -- this is common. Just the act of preparing food can be a great way to express caring and love.

Providing liquids or feedings via tubes in veins or in the stomach does not relieve hunger or thirst, so this is not recommended near the end of life. These types of treatments can also cause discomfort rather than helping the person feel better. 

Caxechia

Caxechia (ka-KEK-sia) is a wasting syndrome that sometimes occurs with a serious illness such as cancer. It causes weight loss, muscle weakness, fatigue, and loss of appetite. Cachexia cannot be reversed with nutrition and increased food intake. At the present time, there is no cure for cachexia beyond treating the underlying illness. Some drugs are available that increase appetite and potentially improve how a person feels. 

Skin Problems

Problems with skin can cause great discomfort. People at the end of life may be troubled by dryness, tenderness, sores, or feeling too hot or cold. With age, skin becomes drier and more fragile naturally, so it is important to take extra care with an older person’s skin. 

Here are some common skin issues that arise near the end of life and ideas for relieving them.

  • Lips and Eyes. Near death, lips and eyes can become dry. A lip balm may help the lips. The inside of the mouth may become dry, too -- ice chips may help if the person is conscious and able to chew. If not, a damp cloth or specially treated swab may be used to wipe the inside of the mouth. For the eyes, a damp cloth placed over closed eyes may help. 
  • Dry Skin. For dry skin on the body, gently applying an alcohol-free lotion may relieve the dryness and be soothing. 

Bed Sores

Sitting or lying in one position puts constant pressure on sensitive skin and bony points in the body such as elbows, tailbone, and heels. This can lead to painful bed sores (doctors and nurses may call them pressure ulcers). The first sign of a bed sore is usually a darkened or discolored area. These appear most frequently on heels, hips, the lower back, and the back of the head. 

Here are some ways to avoid bed sores.

  • Turn the person from side to back and to the other side every few hours. 
  • Place a foam pad under an area like a heel or elbow. A special mattress or chair cushion may also help. 
  • Keep skin clean and moisturized. 
Sores that won’t heal may require treatment by a specialist.

Feeling Too Hot or Cold

People who are dying may not be able to tell you that they are too hot or too cold, but you can watch for clues. For example, someone who is too warm may repeatedly push away a blanket. Pulling blankets up, hunching the shoulders, and shivering may be signs that someone is cold. 

To help, you can try a cool, damp cloth on the forehead of someone who seems too warm. To prevent chills, make sure there are no drafts, raise the heat, and add another blanket. Avoid electric blankets because they can get too hot. 

A fever can cause a dying person to feel too hot or cold. If you confirm the dying person’s temperature is above 98.6°, contact his or her health care provider about treating it. Usually a fever-reducing medicine like acetaminophen (Tylenol ®) may be offered. 

Fatigue

People near the end of life often feel tired and have little or no energy. This isn’t necessarily related to sleep and can be a symptom of the underlying illness and/or the dying process. There are several steps you can take to help a dying person conserve his or her strength.

  • Alternate activity with periods of rest. 
  • Try a bedside commode to avoid the need to walk to the bathroom.
  • Use a shower stool or give a sponge bath in bed to avoid the need to stand while showering.
  • Consider if medical testing and treatments are still needed and wanted. Activities such as checking vital signs (pulse, blood pressure, and temperature) and taking IV medicines (intravenous tubes inserted into a vein with a needle to give medicines or fluids) can exhaust a person who is dying. Ask the health care provider if these are still necessary. 
  • Avoid moving a dying person to a different place, like a hospital, if possible. A dying person can usually be kept just as comfortable or even more so in his or her own home, especially with home care or hospice support. Sometimes it is recommended that patients get treatments that may improve comfort, such as antibiotics and oxygen; these can also be provided in the home or at a nursing home. A change in location not only drains a dying person’s energy, but may also cause confusion and distress.

Dementia 

Dementia, sometimes wrongly referred to as “senility,” is a loss of thinking, remembering, and reasoning skills that interferes with a person’s daily life and activities. Dementia ranges in severity from the mild stage, when it is just beginning to affect a person’s functioning, to the severe stage, when the person must depend completely on others for care. The most common type of dementia is Alzheimer’s disease. Although it is common in very elderly individuals, dementia is not a normal part of the aging process. 

Caring for Someone with Dementia 

Drugs are available to treat some of the conditions that cause dementia, even Alzheimer’s. Although they do not cure dementia or reverse brain damage, they can improve symptoms. A person with moderate to severe dementia may not be able to think well enough to do normal activities, such as getting dressed or eating. The person may lose the ability to solve problems or control emotions. The personality may change and the person may eventually become nonresponsive (catatonic). 

Caring for a person with dementia at home can be demanding and stressful for family caregivers (see  Caring for Someone with Alzheimer’s). Palliative care or hospice can be helpful in many ways to the family of a person with dementia (see Types of Care to learn more).

Delirium 

Delirium is a confused mental state that causes changes in awareness and behavior and may come and go during the day. A person with delirium may also have problems with

  • attention 
  •  thinking and memory
  • hallucinations, either hearing or seeing people or things that are not there
  • emotion 
  • judgment
  • muscle control
  • sleeping and waking.
A person near the end of life may experience delirium. It is common in the last 24-48 hours of life due to organ failure. 

Caring for Someone with Delirium 

People with delirium can make a full recovery if the underlying cause is treatable and reversed. Creating a safe and soothing environment can help improve the course of delirium. You might try

  • keeping the room softly lit at night 
  • turning off the television 
  • removing other sources of excess noise and stimulation
  •  checking for and treating fever (which can cause delirium). 

The presence of a family member, friend, or a professional may reassure someone with delirium, preventing the need to medicate. Sedatives, sleeping medications, and other minor tranquilizers should be used sparingly unless the person is experiencing drug withdrawals.

Is it Dementia or Delirium? 

Delirium and dementia have similar signs and symptoms, so it can be hard to tell them apart. They can also occur together. Here are some of the differences health care providers look for to make an accurate diagnosis. 

Onset: Delirium starts suddenly; dementia develops slowly. 

Course: Delirium symptoms fluctuate; dementia symptoms are stable. 

Duration: Delirium lasts hours to weeks; dementia is measured in months and years. 

 Attention: Delirium causes an inability to focus attention; in dementia, attention is more normal, at least in the early to moderate stages.