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End of Life Care

Managing Symptoms at the End of Life

Article Highlights

  • Reach out to medical professionals
  • Cognitive changes happen often
  • Be aware of your emotional state

En español | The approach to the end of life can bring with it a host of symptoms. Talk to your loved one’s doctor(s) about these symptoms, with your loved one present, if possible. Inquire about home care services that can help and, if so, if they can be ordered by the doctor. Ask whether home hospice care  would be appropriate, if your loved one is willing. You, as the caregiver, do not have to learn how to be a nurse. Reach out to health care professionals and members of your care circle for assistance, guidance and support.

 

See also: Beginning the Conversation About the End of Life.

 

Fatigue
Chronic fatigue, the kind that affects most people who are dying, can stem from:

  • An illness.
  • Anemia.
  • Depression.
  • Poor nutrition.
  • Deconditioning (becoming out of shape from lack of exercise).
  • Side effects from treatments such as chemotherapy and radiation.

Persistent exhaustion impacts every aspect of a person's life: psychological, physical and emotional. Ask your loved one's doctor to adjust medications or try nondrug interventions such as gentle exercise. Even a walk around the block can help. If untreated, fatigue will overwhelm a patient's quality of life. 

Loss of Appetite and Thirst
As the end approaches, the desire to eat and drink ebbs. Because the body either doesn't need as many nutrients or can't absorb them, it stops asking. Weight loss follows. Bear in mind that it's a natural part of the dying process and the patient isn't suffering. Neither family members nor health providers should force terminally ill patients to eat or drink. If they do ask for food or drink, offer small, frequent meals of high-calorie, high-protein foods, or add nutritional supplements. Keep ice chips handy. They relieve two key symptoms: dehydration and dry mouth.

For those who may consider more aggressive measures, such as feeding tubes or intravenous lines, confer first with the doctor, hospice nurse or primary medical professional about the pros and cons.

Skin Breakdown
Anyone confined to a bed for long periods of time will risk bedsores, also known as decubitus ulcers. They usually occur on the arms, legs, feet and back, places where prolonged body weight creates pressure points against the bed. Lack of circulation causes skin to break down at these points. To protect skin and prevent infection, try the following:

  • Change your loved one's position every two hours. Ask a medical professional to show you how to do this safely.
  • Be sure that your loved one maintains good nutrition as best as possible.
  • Talk to your doctor about whether a special bed or mattress can help.
  • If your loved one develops bedsores, ask a doctor, home care nurse or other medical professional how to care for them. If you cannot cope with changing the dressing, find someone who can.

Cognitive Changes
Up to 85 percent of terminally ill patients suffer from cognitive changes during their final days. The most common afflictions include confusion, delirium and agitation. These symptoms arise from any number of causes, including the disease itself, infection, medications, and kidney and liver dysfunction. The reassurance of family and friends can play a vital role in helping someone who suffers cognitive problems. Discuss these cognitive changes with your health care team. Some medications long in use, such as haloperidol, can help with agitation and confusion.

Digestive Problems
For those who are terminally ill, digestive issues are a frequent problem. The most common issues are:

  • Constipation: Patients who are bedbound and not eating a regular diet are often affected by constipation. Many medications worsen it, so talk to your loved one's doctor or nurse about preventions and solutions.
  • Bowel obstructions: A cause of great discomfort, obstructions prevent patients from eliminating stool. An obstruction needs to be diagnosed by a health professional and treated as soon as possible.
  • Nausea/vomiting: Nausea torments 60 percent of terminally ill patients, and episodes of vomiting harass another 30 percent. Again, various medicines complicate it, so talk to the doctor about changing medications or having an anti-nausea drug prescribed.

Shortness of Breath
If shortness of breath occurs, notify your loved one's health team. There are medications that can relax breathing, and home or portable oxygen can help, too.  If medical intervention still leaves your loved one feeling short of breath, try these ideas:

  • Keep him or her sitting up on pillows as much as possible rather than lying flat.
  • Open a window or turn on a fan. This can help psychologically.
  • Give your loved one a hand or foot massage. Relaxation in general can help calm agitated breathing.

Emotional Expectations of the Caregiver
Care recipients, their caregivers and family members can expect a whirlwind of emotions during the end of life process. Sometimes, these emotions can get in the way of the precious time you have left with the one you love. It's important to honor your feelings and not to force cheer or happiness, as it can be very alienating to the person who is ill. Showing sadness is okay at times because it will let your loved one know they are cared for and will be missed.

Talk with family members, your medical team, social worker or clergy about how you are feeling. Try resolving lingering issues, and you will discover a sense of closure and peace of mind. Depression and anxiety are common emotions during this time, but don’t have to be inevitable parts of the end of life, for either the patient or the caregiver.

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