A person is considered to be actively dying when he/she enters the final stage of life. Understandably this can be a very challenging time for caregivers.
Many people transition into this stage without any major problems. However, there are certain symptoms that may arise during these final stages that require some attention to make the person more comfortable while in the process of actively dying.
This list comes from a study looking for common symptoms in 200 actively dying cancer patients. They are listed from most to least common with ways for caregivers to help in relieving or managing the symptom.
1. Noisy and Moist Breathing
Noisy and moist breathing occurs 56 percent of the time.An actively dying person frequently develops irregular, breathing patterns known as Cheyne-Stokes respirations. The breathing becomes shallower, slows and stops for several seconds to a minute. This is followed by several rapid, deep, exaggerated breaths. This pattern can continue for some time.
Fortunately, the irregular breathing is rarely distressing to the person who is dying.
Ways to Help
If the person has labored breathing:
- Open a window to let in fresh air.
- Direct a fan on the person's cheek.
- Try different positions to ease the labored breathing.
2. Pain
Pain occurs 42 percent of the time.New pains were identified 29.5 percent of the time in the Lichter study. However, in this study no pains were judged by the patients as being persistent or severe.
Contrary to common fears, pain and great distress are uncommon at the very end and can be treated to make the death as symptom-free as possible. Most dying can be peaceful with support.
Ways to Help
If the person has pain:
- Any new pain should be reported to the hospice provider for assessment.
- Any change in pain should be reported for assessment.
- Helpful brochure: When You Have Pain at the End of Life
3. Restlessness and agitation
Restlessness and agitation occurs 42 percent of the time.Restless and agitation occurred in a fairly high percentage of the patients suggesting that altered or confused states are not uncommon in actively dying patients. Minimize confusion in the room can help.
Ways to Help
If the person appears to be restless or agitated:
- Determine if he/she may be in pain or uncomfortable. Treat the pain or make more comfortable.
- Create a quiet, peaceful atmosphere.
- Play soothing music.
- Avoid sudden noises or movements that may be startling.
- Speak in calm, quiet voice.
- Limit the number of people in the room.
4. Urinary Incontinence
Urinary incontinence occurs 32 percent of the time. Incontinence, loss of bowel/bladder control, can be distressing to the dying person. Accidents may occur. Urine is darker and a decreased amount.As death nears, the muscles in bladder and bowel relax and the contents are released. This is normal.
Ways to Help
- Keep the person clean and dry using incontinence pads, catheter or other collection devices.
- Pad the bed with layers of disposable waterproof pads.
- Helpful resource: Urinary Incontinence - Catheters and Collection Devices or Urinary Incontinence - Other Treatments
- Helpful resource: Bowel Incontinence
5. Dyspnea
Dyspnea occurs 22 percent of the time.Dyspnea is difficult or painful breathing, or the experience of being short of breath. It may or may not be associated with suffering. Dyspnea is often associated with panic and anxiety; panic may present as dyspnea, and dyspnea may induce panic. Relieving the anxiety may help.
Ways to Help
If the person has dyspnea:
- Medications, opioids and benzodiazepines are the mainstays of palliative therapy for dyspnea. Talk with your hospice provider for the best treatment options.
- Move the person in any position that seems to make breathing more comfortable.
- Helpful Resource: Dyspnea
6. Urinary Retention
Urinary retention occurs 21 percent of the time.Urinary retention is the inability to urinate or to completely empty the bladder. There is a high incidence of urinary retention at the end of life causing a lack of urine output.
A person may be retaining urine if gently pushing on the bladder causes the person becomes distressed and/or reaches for his/her groin area.
Ways to Help
If the person appears to be experiencing urinary retention:
- Contact the hospice provider. A catheter may need to be placed in the bladder to drain the urine and relieve the symptoms.
- Only give fluids the person wants to drink.
7. Nausea and Vomiting
Nausea and vomiting occur 14 percent of the time. Nausea and Vomiting are frequently managed with medication after determining the reason for the nausea.Nausea tends to decrease in the actively dying person, as his or her appetite and thirst decreases resulting in a decrease in the amount of food or fluids taken by mouth.
Ways to Help
If the person appears to be experiencing nausea and vomiting:
- Contact hospice to help determine the cause and potential treatments.
- Provide only foods or drinks that the person wants to eat or drink.
- Ice chips and sips of liquids may be helpful.
- Helpful Resource: Nausea and Vomiting
8. Sweating
Sweating occurs 14 percent of the time.See if the sweating may be due to a fever, too many covers or a high room temperature.
Ways to Help
If the person has episodes of sweating:
- Medication can be used to help lower sweating due to fever. Check with your hospice provider for recommendations.
- Remove extra blankets and coverings.
- Lower room temperature.
- Keep the patient cool - open a window to let in fresh air or turn a fan on them.
- Regularly change bed linen. Keep waterproof pads only under the hips.
- Sponge baths or cool, moist wash cloths on the head, face and body can help and comfort.
9. Jerking, Twitching or Plucking
Jerking, twitching, and plucking occurs 12 percent of the time.Some of these may be related to causes of confusion. Often times all of these symptoms can be due to medication side effects.
Ways to Help
If a person is jerking, twitching or plucking:
- Contact the hospice provider to determine if the dose or type of medications could be causing the symptoms and if the medication can be adjusted or changed.
- Eliminate causes and try treatments for confusion, restlessness and agitation.
10. Confusion
Confusion occurs 8 percent of the time. The actively dying person is often in a confused state. The person may report seeing or feeling the presence of loved ones who have died.Ways to Help
If the person appears to be confused:
- Switch on a side light. Keep the room quiet.
- Orient the person. Explain what is happening. Speak in short phrases.
- Look for any changes in medication.
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Source:
Hallenbeck JL. Symptoms of Active Dying. Chapter 11: The Final 48 Hours in Palliative Care Perspectives.
Lichter I, Hunt E. The last 48 hours of life. J Palliat Care 1990; 6(4): 7-15.
