Pallative Care Article
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 bed bound
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 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.
"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", says Jennifer K. Clark, MD, professor of palliative medicine at
the University of Oklahoma College of Community Medicine, Tulsa.
"Children are so resilient that they are often fairly
active – and asking a lot of tough-to-answer questions – until the end is
near," Clark tells WebMD.
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.
"This isn't merely distressing for family members.
Their loved ones could hurt themselves, so it's important to nip it in the bud
with medications or non-pharmacological interventions," Holtzer says.
Holtzer advises making sure the room is well lit, but not
brightly lit; ensuring that the room is as quiet and peaceful as possible; and
constantly assuring 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.
"Once in a while patients rally, and know exactly who
you are and can talk with you. When this happens, it's a real gift to the
family," Braun says.
During the journey to death,
the signs and symptoms
of approaching
death
are unique to each person
and his or her condition.
"Some people will have a very gradual decline. Others
may have a more rapid decline, and their signs and symptoms will usually be
more pronounced," says Carol Lovci, RN, vice president at San Diego
Hospice and The Institute of Palliative Medicine.
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.
With those things in mind, Lovci recommends family 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.
"Families often sit late into the night, and then, when
they have gone home, the person dies. It's as if their loved one couldn't let
go while they were there," says Holtzer.
Resources:
These resources may be of particular help to caregivers,
families, and friends of a person who is dying:
- Aging in the Know: Palliative Care and Hospice. DyingWell.org
- Family Caregiver Alliance, End-of-Life Choices: Holding on and Letting Go
- American Geriatrics Society: Dying at Home
- 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).
- Karnes, B. Gone From My Sight: The Dying Experience, Barbara Karnes Books Inc. (cost: $3, includes shipping and handling).
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