Journey's End: Active Dying
What to Expect when Your Loved One Is Dying
Some people in a palliative care program will get better and move on with their life. When people have a terminal condition – when death is expected – palliative care helps to improve life quality for patients, caretakers, and loved ones.
When members of your palliative care team recognize the signs that a person is within months or weeks of dying, they may recommend transitioning to hospice.
"When they are in hospice, they will get the same comfort care, but more services will be provided for both the patient and the family," Ursula Braun, MD, MPH, director of the palliative care unit at the DeBakey Veterans Administration Medical Center in Houston, tells WebMD.
As death approaches, the role of the caretaker changes, says Phil Higgins, director of palliative care outreach at Boston's Dana Farber/Brigham & Women's Cancer Center.
"Where before you did a lot of hands-on care, now your role may be to be present, to comfort and reassure your loved one with soothing words and actions that help maintain their comfort and dignity as they approach death," Higgins tells WebMD.
Symptoms and Signs that Death Is Near
Barbara Karnes, RN, an expert on the dynamics of dying, lists the usual and normal physical signs and symptoms of approaching death in her book Gone From My Sight: The Dying Experience.
One to three months prior to death, your loved one is likely to:
- Sleep or doze more.
- Eat and drink less.
- Withdraw from people and activities previously found pleasurable.
- Be less – or if they are a child, more – communicative.
One to two weeks prior to death, your loved may be bedbound and may be experiencing:
- Increased pain, which can be treated.
- Changes in blood pressure, respiratory rate, and heart rate.
- Continued loss of appetite and thirst and difficulty taking medications by mouth.
- Decline in bowel and bladder output.
- Changes in sleep-wake patterns.
- Temperature fluctuations that may leave the skin cool, warm, moist, or pale.
- Constant fatigue.
- Congested breathing from the build-up of secretions at the back of the throat. "The sounds this makes can be very distressing for family members, but it's not painful and can be managed in a variety of ways, including with medications," says Braun.
- Disorientation or seeing and talking to people who aren't there. These hallucinations and visions, especially if they are of long-gone loved ones, can be comforting. "When they are pleasant for the person, don't try to convince them that a loved one isn't there. That can make someone who is pleasantly confused become agitated and combative," says Andrea M. Holtzer, RN, palliative care nurse coordinator at St. Mary's Hospital in Amsterdam, New York.
When death is imminent – within days or hours:
- Your loved one may not want food or drink.
- There may be little or no bladder or bowel activity.
- Pain may show as grimaces, groans, or scowls and should be managed.
- Eyes may tear or become glazed.
- If not already unconscious, your loved one may drift in and out of consciousness. "They are probably still able to hear and feel," says Braun. "So it's important to talk to them and to hold their hand."
- Pulse and heart beat may be be irregular and/or difficult to detect.
- Body temperature will drop and the skin of the knees, feet, and hands will become a mottled bluish-purple. "Once the mottling starts, death is often within 24 hours," says Holtzer.
- Breathing, punctuated by gasping starts and stops, will slow – until it stops entirely.