FAQ’s About End of Life Care

Eating and drinking are some of life’s greatest pleasures and many family members may become concerned when their loved ones lose interest in these pleasures. Family members may feel that food and drink are important and try to force their loved one to eat. Although this may be done with the best intentions, it is important to not force or guilt the individual into eating and drinking.

“The person may have a decrease in appetite and thirst , wanting little or no food or fluid. The body will naturally begin to conserve energy which is expended on these tasks.”¹

“In the absence of nutrition and hydration, the body draws on endorphin, a morphine-like substance in the body that blunts nerve endings. An emerging consensus indicates that this form of natural dying is not painful.”²

 

Things you can do:

  • Encourage favorite foods and drinks, but never force a person to eat or drink
  • Help family members and friends understand why eating and drinking may make the person uncomfortable as the body loses the ability to use nutrition and hydration
  • Support the person’s decision if he/she refuses food and/or fluids
  • Make mealtime a quiet and pleasant time

Witnessing your loved one go through the stages of end of life is indeed difficult, but you must also realize that this process is not easy for your loved either. Your loved one will tend to reflect on past memories and life experiences with a sense of admiration or at times even remorse, which could result in restlessness. Restlessness often presents itself as inability for someone to relax, concentrate, or rest. As a family member or friend, there are many things that you can do to help your loved one feel more at ease.

Signs to look for:

  • Irritability or agitation, aimless movements or inability to focus
  • Mood swings; looking disturbed; grimacing, grunting; looking startled or alarmed
  • Changes in consciousness, whether overly alert or lethargic; reduced awareness of the surroundings; difficulty in sleeping or being awake all night
  • Increased or varying confusion (when previously clear); impaired memory and attention span
  • Uncharacteristic speech, whether loud or soft, fast or slow
  • Not recognizing you, seeming not to know where he or she is
  • Appearing to see, hear or feel things that aren’t there; motioning or calling out to people who aren’t there
  • Crying out for help, sometimes repeatedly; not being able to tell you what’s wrong; uncharacteristic profanity; disrobing, trying to get out of bed or out of the room.

Things you can do:

  • Offer frequent reassurance
  • Offer relaxation activities, for example: play soothing music
  • Keep things calm, for example: decrease numbers of visitors
  • Read favorite stories, poems, etc. in a calm voice
  • Hold the person’s hand, give them a gentle massage

“Dyspnea (breathlessness) can be defined as “an uncomfortable sensation or awareness of breathing… patients may describe the feeling as shortness of breath, inability to get enough air or suffocation.” It differs from tachypnea (increased respiratory rate) and hyperapnea (increased depth of ventilation). It is frequently described in terms of air hunger, choking, or heavy breathing, and it can be extremely distressing for families and caregivers to witness.”

Possible specific underlying causes of dyspnea are many. Physical etiologies include:

  • Airway obstruction
  • Bronchospasm
  • Hypoxemia (low oxygen)
  • Pleural effusion (fluid around the lungs)
  • Pneumonia
  • Pulmonary edema (fluid in the airspace inside the lungs)
  • Pulmonary embolism (blood clot)
  • Thick secretions
  • Anemia
  • Metabolic derange

Psychological, social, and spiritual issues, such as loss and grief or fear of dying, can cause anxiety. Anxiety can cause dyspnea.

Things you can do:

  • Sit in a chair or recline
  • Elevate your head on pillows when lying in bed
  • Practice pursed lip breathing technique. Take slow, deep breaths, breathing in (inhale) through nose and then breathe out (exhale) slowly and gently through pursed lips (lips that are “puckered” as if you were going to whistle)
  • Increase air movement by opening a window, using a fan or air conditioner. Apply a cool cloth to your head or neck
  • Keep your environment quiet to decrease feelings of anxiety
  • Use relaxing activities such as prayer, medication, calming music, and massage

We may feel it is healthy and even necessary for individuals to have daily bowel movements, but towards the end of life bowel movements tend to become irregular. Many will experience constipation or even diarrhea due to many factors. It is important to realize this irregularity and inability to have a bowel movement, so as not to force the individual into doing so. In the event your loved one becomes uncomfortable, there are indeed treatments offered that can ease and relieve their discomfort.

Constipation is a frequent problem for patients nearing end of life. There are many factors common to these patients that lead to constipation.

Causes:

  • Decreased intake of food and/or water
  • Decreased activity
  • Medication side effect
  • Nerve damage to bowels by disease
  • Tumors in the abdomen

Constipation can be very uncomfortable, and should be treated as aggressively as other symptoms that cause discomfort near end of life.

Symptoms:

  • Abdominal pain and cramping
  • Nausea
  • Loss of bowel control
  • Hiccups
  • Confusion

Things you can do:

  • Drink as much fluid (liquids) as is comfortable. Drinking warm liquids may promote bowel movement
  • Eat more fruits and fruit juices, including prunes and prune juice
  • Sit upright on toilet, commode or bedpan
  • Provide ample time and privacy during toileting
  • Keep skin clean and dry to prevent breakdown and odors. Avoid baby powder and cornstarch – use protective barrier creams

The main objective when caring for a loved one during their end of life stages is to assure they are in no pain and that they are as comfortable as possible. Pain can be displayed in a variety of ways and all people experience it differently. External physical pain can be more easily seen in your loved one than the internal emotional and spiritual distress they may also be experiencing. Therefore, it is important to be very conscious of your loved one’s behaviors that may resemble signs of pain.

Total pain is the sum of four components: physical noxious stimuli, affect or emotional discomfort, interpersonal conflicts, and nonacceptance of one’s own dying. These four components may individually or in combination affect patients’ perception of their total pain.

The “gold standard” of pain management is constant pain assessment. Pain is whatever the patient says it is. Simply asking patients about their pain is the best way to obtain this information. Patients describe nonphysical components of pain as “discomfort.” In dying persons, pain is never purely physical. Things related to when and how they will eventually die influence their pain.

Things you can do:

  • Relaxing activities such as listening to music, light massage, soaking in a tub of warm water, or guided imagery (picturing enjoyable and relaxing scenes to take one’s mind off the pain)
  • Distracting activities such as watching TV, playing a game, or just thinking of other things
  • Heat or cold (such as a heating pad, warm compress, or ice pack
  • Pleasant smells of certain plants or fragrances (aromatherapy) such as lavender, etc.
  • Storytelling, drawing
  • Deep breathing

When caring for your loved one as they near the end of their life, you may notice a gurgling or rattling sound when breathing. It may appear that your loved one is choking, yet in fact, this is just a build of up saliva over the airway that produces this sound, but does not harm them.

There may also be a rattling noise (often referred to as the “death rattle”) at the back of the throat. The person is no longer able to cough or swallow, which causes secretions such as saliva to pool in the back of the throat.

Things you can do:

  • Raising the head of the bed
  • Propping the patient up with pillows
  • Turning the patient to either side may help relieve rattle