Signs and Symptoms at the End of Life

KEYPOINTS

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  • Unless properly treated severe symptoms at the end of life are common for many children
  • Even quite young children can have an understanding of death

Confusion/Disorientation/Delirium

  • Confusion/delirium is very common at the end of life
  • It is the result of multiple, nonreversible factors, such as: hypoxemia, metabolic and electrolyte imbalances, toxin accumulation due to liver and renal failure, adverse effects of medications, infection, and the underlying disease process
  • Patients will demonstrate increased drowsiness, a need for more sleep, and decreased responsiveness
  • Some patients may experience an “agitated” delirium due to central nervous system excitation. The risk of agitated delirium is increased if the patient has cerebral metastases. Refer to the Delirium guidelines
  • Since reversing the cause of the delirium is often not possible at the end of life, the focus should be on managing the symptoms associated with the delirium, keeping the patient safe, and reassuring the patient and family. Refer to the Delirium guidelines
  • Evidence suggests that unconscious patients may still be able to hear conversations, and family members can be encouraged to speak to their loved one as though they were conscious

Weakness/Fatigue

  • Weakness and fatigue increase as the patient gets closer to death
  • It is not appropriate to give stimulants (methylphenidate, steroids) to try to “wake the patient up” at this stage of the illness
  • Patients may need gentle passive movement to minimize risk of pressure ulcer formation if they are too weak to turn in bed. However, this must be done cautiously since turning and repositioning may cause pain. If death is imminent, the risk of pressure ulcer formation is not relevant.
  • It is important to allow the patient to rest and to help family members understand that this weakness and fatigue is a normal part of the dying process
  • Patients will have a limited amount of energy and we can help the patient prioritize how they want to use this energy. For example, inserting a foley catheter may allow the patient to use energy talking and visiting with family that he would otherwise use moving to the toilet

Decreased Oral Intake

  • Loss of oral intake (both food and fluids) is a normal part of the dying process. Refer to the Anorexia and Cachexia guideline
  • Actively dying patients are not hungry or thirsty, and oral intake may actually be dangerous as the risk of aspiration increases as the patient becomes weaker
  • Parenteral or enteral feeding at the end-of-life has not been shown to improve symptom control or lengthen life
  • Excessive parenteral fluids, especially in the setting of hypoalbuminemia, can cause fluid overload and significantly increase patient’s distress by exacerbating peripheral oedema, ascites, pulmonary oedema and dyspnea
  • Frequent oral care (swabbing the mouth with water, keeping lips moist with vasoline/balm) is generally more important for patient comfort than giving fluids

Decreased Blood Perfusion/Renal Failure

  • As cardiac output and intravascular volume decrease there will be evidence of diminished blood perfusion
  • Tachycardia, hypotension, cool extremities, cyanosis and mottling of skin are common at the end of life
  • Urine output is reduced as perfusion of the kidneys fails. Oliguria/anuria are expected signs
  • Parenteral fluids will not reverse this circulatory failure

Vital Sign Changes

Respiration

  • Changes in the dying patient’s breathing pattern typically indicate significant neurological compromise
  • Breaths may become shallow and frequent, or shallow and slow
  • Periods of apnea and increased use of accessory respiratory muscles is common
  • It is important to control the symptom of dyspnea, not only for the patient’s comfort, but also because family members often view this as the most distressing sign at the end of life. Refer to Dyspnea guidelines

Temperature

  • Elevated temperature is common at the end-of-life. It can be due to infection, dehydration and/or the underlying disease (i.e. “tumour fevers”)
  • Reversing the fever at the end of life is generally not possible
  • The most effective treatment is acetaminophen/paracetamol rectal suppositories, 650 mg given q4-6h either around the clock or prn
  • Diaphoresis can be managed with frequent linen changes and cool sponge baths/soaks

Heart rate/pulse

  • Heart rate may increase with an irregular rhythm
  • Cyanosis can be seen as cardiac output falls, and is often first noted in the tip of the nose, nail beds and knees
  • Extremities will become mottled and cooler. Progressive mottling indicates death within a few days; absence of a radial pulse may indicate death in a few hours

Decreased or Diminished Swallow Reflex

  • Weakness and decreased neurologic function impair the patient’s ability to swallow at the end of life
  • The patient loses the ability to clear secretions from their oropharynx
  • This accumulation of saliva and oropharyngeal secretions may lead to gurgling or rattling sounds with each breath, sometimes called “death rattle”
  • This sound can be very distressing to family members, as it may sound as though the patient is choking. Family education is critical
  • Medications such as atropine or glycopyrronium/glycopyrrolate can help reduce this symptom. Repositioning the patient in a lateral recumbent position can facilitate the clearing of secretions. Gentle oropharyngeal suction can sometimes be helpful. Refer to the Respiratory Secretions at the End of Life guidelines

Surges of Energy

  • Patients may experience a period of increased energy and mental alertness prior to their death
  • This can be a time for quality interaction between family members and the patient

Incontinence/Urinary Retention

  • Fatigue and loss of sphincter control can lead to incontinence of urine and/or stool at the end of life
  • Family members should be educated that this is a common occurrence
  • Special attention should be paid to keeping the patient clean and dry. A foley catheter may be helpful, but may not be necessary if urine output is minimal and can be controlled with absorbent pads
  • Urinary retention can occur. If a patient is restless and has a distended bladder it may indicate the bladder needs to be emptied and insertion of a foley catheter may bring relief

SOURCES/REFERENCES

  1. Abraham J. A physician’s guide to pain and symptom management in cancer patients. Baltimore: The Johns Hopkins University Press; 2000.
  2. Berry P, Greiffie J. Planning for the actual death. Ferrell B, Coyle N, editors. Textbook of palliative nursing. New York: Oxford University Press; 2001.
  3. Neufeld R. Last hours of living. Education for physicians on end-of-life care (EPEC) curriculum. Princeton (NJ): Robert Wood Johnson Foundation; 1999.
  4. Module 9: Preparation for care at the time of death. [CD-ROM]. ELNEC (End-of-Life Nursing Education Consortium) core curriculum; 2001.
  5. Wolfe J, Grier HE, Klar N, Levin SB, Ellenbogen JM, Salem-Schatz S et al. Symptoms and suffering at the end of life in children with cancer. N Eng J Med 2000;342(5):326-333. http://www.ncbi.nlm.nih.gov/pubmed/10655532

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