Journey's End: Active Dying

• What to Expect when Your Loved One Is Dying
• Symptoms and Signs that Death Is Near
• When to Say Good-bye
• Resources:

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 isexpected – 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.

Symptoms and Signs that Death Is Near continued...

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.

For children and teens, the signs and symptoms are more or less the same as for adults. However, the course of dying is harder to predict in children. They often remain fairly active and ask a lot of tough-to-answer questions right up until the end is near. 

In the last days or hours, your loved one may experience what doctors call terminal delirium: heightened activity and confusion often accompanied by hallucinations so distressful they may cry out, strike out, or try to climb out of bed. Since your loved one could hurt him or herself,  it's important to try to stop it with medications or with other non-drug interventions.

Make sure the room is well lit, but not brightly lit; also make the room as quiet and peaceful as possible and constantly assure your loved one that you are there.

Ironically, in the last days or hours, a loved one may also experience a period of clarity and lucidity.

During the journey to death, the signs and symptoms of approaching death are unique to each person and his or her condition. Some people have a very gradual decline. Others have a more rapid decline, and their signs and symptoms are usually more pronounced.

When to Say Good-bye

One of the hardest questions is when to call in family members to say good-bye and to make memories for the future.

Family should be notified as soon as it becomes evident that death is approaching. This allows the care team to provide them insight about what to expect – both in terms of their loved one's decline and their own physical and emotional reactions – and it enables family members to support one another and their loved one.

Don't assume, however, that calling the family in means they will be there at the end. It's often the case that families will sit late into the night, but the person doesn't die until they have left, as if he or she was unable to let go while they were there.

Resources:

These resources may be of particular help to caregivers, families, and friends of a person who is dying:

• Family Caregiver Alliance, End-of-Life Choices: Holding on and Letting Go
• Hospice and Palliative Nurses Association, Patient/Family Teaching Sheets: Final Days
• Hospice Foundation of America,The Dying Process: A Guide for Caregivers, revised, 2007 (free).