Caring To The End

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Assessment

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Monitoring by phone and at least one visit per day. The presence of a physician on-site is often very reassuring for patient and family. Rapid access to the interdisciplinary team must be assured. On-call providers should be informed about the patient and the care plan clarified to keep all care providers in synchrony.

The Signs and Symptoms of Impending Death

Rapidly increasing weakness and fatigue

  • Weakness and fatigue usually increase as the patient gets closer to death.
  • It is likely that the patient will not be able to move around in the bed or raise his or her head.
  • At the end of life, fatigue need not be resisted and most treatment to alleviate it can be discontinued.

Decreasing intake of food and fluids:

  • most patients lose their appetite and reduce food intake long before they reach the last of their lives. There are many causes, most of which become irreversible close to death;
  • families and professional caregivers may interpret cessation of eating as “giving in.” They frequently worry that the patient will “starve to death;”
  • this decrease in fluid intake is accompanied by decreased urine output and dry membranes.

Difficulty swallowing with loss of gag reflex:

  • weakness and decreased neurologic function frequently impair the patient’s ability to swallow;
  • the gag reflex and reflexive clearing of the oropharynx decline and secretions from the tracheobronchial tree accumulate;
  • the mouth is often open and the jaw falls posterior with narrowing of the airway, which may exacerbate difficulty clearing secretions;
  • these conditions may become more prominent as the patient loses consciousness. Buildup of saliva and oropharyngeal secretions may lead to gurgling, crackling, or rattling sounds with each breath;
  • some have called this the “death rattle,” a term frequently disconcerting to families and caregivers. For unprepared families and professional caregivers, it may sound like the patient is choking.

Decreasing level of consciousness:

  • the majority experience increasing drowsiness, sleep most if not all of the time, have limited periods of being fully awake and lack interest in their surroundings;
  • decreased or absent blinking is common leading to drying of the conjunctiva and possible discomfort;
  • they may eventually become unrousable i.e. comatose;
  • absence of eyelash reflexes on physical examination indicates a profound level of coma equivalent to full anesthesia;
  • reflex activity:
    • grasping hands;
    • clenching teeth on swab;
    • moaning with movement, position change, each breath out.

Terminal delirium or agitation.

  • Delirium may be the first sign to herald the “difficult road to death” for a minority of patients.
  • It frequently presents as confusion, restlessness, and/or agitation, with or without day-night reversal. (Symptom Management)
  • Agitated terminal delirium can be very distressing to family and professional caregivers who do not understand it.
  • Although previous care may have been excellent, if the delirium goes misdiagnosed or unmanaged, family members will likely remember a horrible death “in terrible pain” and may worry that their own death will be the same.

Respiratory changes, especially apneic spells:

  • changes in a dying patient’s breathing pattern may be indicative of the significant neurological compromise that accompanies the dying process;
  • breaths may become very shallow and frequent with a diminishing tidal volume;
  • periods of apnea are the most common changes seen. Cheyne-Stokes or acidotic pattern respirations also may develop;
  • accessory respiratory muscle use may become prominent;
  • a few, sometimes many, last deep, irregular and infrequent breaths may signal death;
  • families and professional caregivers frequently find changes in breathing patterns to be one of the most distressing signs of impending death. Many fear that the comatose patient will experience a sense of suffocation. Relating their experience as different than what the patient feels will help to reduce their anxiety and distress.

Evident cardiovascular changes:

  • as cardiac output and intravascular volume decrease toward the end of life, there will be evidence of diminished peripheral blood perfusion;
  • tachycardia;
  • hypotension;
  • peripheral cooling, peripheral and central cyanosis, and mottling of the skin (livedo reticularis) are normal;
  • venous blood may pool along dependent skin surfaces;
  • urine output falls as per-fusion of the kidney diminishes. Oliguria or anuria is normal;
  • parenteral fluids will not reverse this circulatory shutdown.

About Us

Adapting your Home and Equipment Needs
To make your loved one comfortable, to ensure safety, and to make caregiving easier, you’ll probably need to adapt your home in some way. You’ll also need at least basic equipment and supplies.

The bedroom (or whichever room the bed is placed in) is usually the most important thing to consider. Click below for details about preparing:




How your family unit generally functions

Do family members communicate effectively, solve problems, and work well as a team? If so, your family may already be well prepared for the challenges involved in cancer and caregiving. Do family members tend to act independently or at cross-purposes? If so, it may take more time to focus efforts and coordinate activities. Has your loved one traditionally been the primary decision maker? If so, family roles and responsibilities may change a lot.

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