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 the quality of life 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. Hospice provides the same comfort care that palliative care does but also offers more services for both the patient and family.
As death approaches, the role of the caretaker changes. Before you may have provided a lot of hands-on care. As death gets nearer, that role becomes more one of being present, providing comfort, and reassuring your loved one with soothing words and actions that help maintain your loved one's comfort and dignity as he or she approaches death.
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 bed bound and 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, which can be very distressing for family members. but which isn't painful and can be managed
- Disorientation or seeing and talking to people who aren't there
The hallucinations and visions, especially if they are of long-gone loved ones, can be comforting. If they are pleasing to the person who is dying, it is best not to try convincing the person that they aren't real. Trying to convince someone who is pleasantly confused that a loved one isn't there can make that person agitated and combative.
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. It's important to continue talking to your loved one and holding his or her hand since he or she probably can still hear and feel.
- Pulse and heart beat may be irregular 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 often occurs within 24 hours.
- Breathing, punctuated by gasping starts and stops, will slow until it stops entirely.