Date reviewed: 10/30/2002
End-of-Life Care: Questions and Answers
When a patient's health care team determines that the cancer
can no longer be controlled, medical testing and cancer treatment often
stop. But the patient's care continues. The care focuses on making the
patient comfortable. The patient receives medications and treatments to
control pain and other symptoms,
such as constipation, nausea, and shortness of breath. Some patients
remain at home during this time, while others enter a hospital or other
facility. Either way, services are available to help patients and their
families with the medical, psychological, and spiritual issues surrounding
dying. A hospice often provides such services.
The time at the end of life is different for each person. Each
individual has unique needs for information and support. The patient's and
family's questions and concerns about the end of life should be discussed
with the health care team as they arise.
The following information can help answer some of the questions that
many patients, their family members, and caregivers have about the end of
life.
- How long is the patient expected to live?
Patients and their family members often want to know how long a
person is expected to live. This is a hard question to answer. Factors
such as where the cancer is located and whether the patient has
other illnesses can affect what will happen. Although doctors may be
able to make an estimate based on what they know about the patient, they
might be hesitant to do so. Doctors may be concerned about over- or
under-estimating the patient's life span. They also might be fearful of
instilling false hope or destroying a person's hope.
- When caring for the patient at home, when should the caregiver call
for professional help?
When caring for a patient at home, there may be times when the
caregiver needs assistance from the patient's health care team. A
caregiver can contact the patient's doctor or nurse for help in any of
the following situations:
- The patient is in pain that is not relieved by the prescribed dose
of pain medication;
- The patient shows discomfort, such as grimacing or moaning;
- The patient is having trouble breathing and seems upset;
- The patient is unable to urinate or empty the bowels;
- The patient has fallen;
- The patient is very depressed or talking about committing suicide;
- The caregiver has difficulty giving medication to the patient;
- The caregiver is overwhelmed by caring for the patient, or is too
grieved or afraid to be with the patient; or
- At any time the caregiver does not know how to handle a situation.
- What are some ways that caregivers can provide emotional comfort to
the patient?
Everyone has different needs, but some emotions are common to most
dying patients. These include fear of abandonment and fear of being a
burden. They also have concerns about loss of dignity and loss of
control. Some ways caregivers can provide comfort are as follows:
- Keep the person company—talk, watch movies, read, or just be with
the person.
- Allow the person to express fears and concerns about dying, such
as leaving family and friends behind. Be prepared to listen.
- Be willing to reminisce about the person's life.
- Avoid withholding difficult information. Most patients prefer to
be included in discussions about issues that concern them.
- Reassure the patient that you will honor advance directives, such
as living wills.
- Ask if there is anything you can do.
- Respect the person's need for privacy.
- What are the signs that death is approaching? What can the caregiver
do to make the patient comfortable?
Certain signs and symptoms can help a caregiver anticipate when death
is near. They are described below, along with suggestions for managing
them. It is important to remember that not every patient experiences
each of the signs and symptoms. In addition, the presence of one or more
of these symptoms does not necessarily indicate that the patient is
close to death. A member of the patient's health care team can give
family members and caregivers more information about what to expect.
- Drowsiness, increased sleep, and/or unresponsiveness
(caused by changes in the patient's metabolism).
The caregiver and family members can plan visits and activities for
times when the patient is alert. It is important to speak directly to
the patient and talk as if the person can hear, even if there is no
response. Most patients are still able to hear after they are no
longer able to speak. Patients should not be shaken if they do not
respond.
- Confusion about time, place, and/or identity of loved ones;
restlessness; visions of people and places that are not present;
pulling at bed linens or clothing (caused in part by changes in the
patient's metabolism). Gently remind the patient of the time, date,
and people who are with them. If the patient is agitated, do not
attempt to restrain the patient. Be calm and reassuring. Speaking
calmly may help to re-orient the patient.
- Decreased socialization and withdrawal (caused by decreased
oxygen to the brain, decreased blood flow, and mental preparation for
dying).
Speak to the patient directly. Let the patient know you are there
for them. The patient may be aware and able to hear, but unable to
respond. Professionals advise that giving the patient permission to
“let go” can be helpful.
- Decreased need for food and fluids, and loss of appetite
(caused by the body's need to conserve energy and its decreasing
ability to use food and fluids properly).
Allow the patient to choose if and when to eat or drink. Ice chips,
water, or juice may be refreshing if the patient can swallow. Keep the
patient's mouth and lips moist with products such as glycerin swabs
and lip balm.
- Loss of bladder
or bowel
control (caused by the relaxing of muscles in the pelvic area).
Keep the patient as clean, dry, and comfortable as possible. Place
disposable pads on the bed beneath the patient and remove them when
they become soiled.
- Darkened urine
or decreased amount of urine (caused by slowing of kidney function
and/or decreased fluid intake).
Caregivers can consult a member of the patient's health care team
about the need to insert a catheter
to avoid blockage. A member of the health care team can teach the
caregiver how to take care of the catheter if one is needed.
- Skin becomes cool to the touch, particularly the hands and
feet; skin may become bluish in color, especially on the underside of
the body (caused by decreased circulation to the extremities).
Blankets can be used to warm the patient. Although the skin may be
cool, patients are usually not aware of feeling cold. Caregivers
should avoid warming the patient with electric blankets or heating
pads, which can cause burns.
- Rattling or gurgling sounds while breathing, which may be
loud; breathing that is irregular and shallow; decreased number of
breaths per minute; breathing that alternates between rapid and slow
(caused by congestion from decreased fluid consumption, a buildup of
waste products in the body, and/or a decrease in circulation to the
organs).
Breathing may be easier if the patient's body is turned to the side
and pillows are placed beneath the head and behind the back. Although
labored breathing can sound very distressing to the caregiver,
gurgling and rattling sounds do not cause discomfort to the patient.
An external source of oxygen may benefit some patients. If the patient
is able to swallow, ice chips also may help. In addition, a cool mist
humidifier
may help make the patient's breathing more comfortable.
- Turning the head toward a light source (caused by
decreasing vision).
Leave soft, indirect lights on in the room.
- Increased difficulty controlling pain (caused by progression
of the disease).
It is important to provide pain medications as the patient's doctor
has prescribed. The caregiver should contact the doctor if the
prescribed dose does not seem adequate. With the help of the health
care team, caregivers can also explore methods such as massage and
relaxation techniques to help with pain.
- Involuntary movements (called myoclonus), changes in heart
rate, and loss of reflexes in the legs and arms are additional
signs that the end of life is near.
- What are the signs that the patient has died?
- There is no breathing or pulse.
- The eyes do not move or blink, and the pupils are dilated
(enlarged). The eyelids may be slightly open.
- The jaw is relaxed and the mouth is slightly open.
- The body releases the bowel and bladder contents.
- The patient does not respond to being touched or spoken to.
- What needs to be done after the patient has died?
After the patient has passed away, there is no need to hurry with
arrangements. Family members and caregivers may wish to sit with the
patient, talk, or pray. When the family is ready, the following steps
can be taken.
- Place the body on its back with one pillow under the head. If
necessary, caregivers or family members may wish to put the patient's
dentures or other artificial parts in place.
- If the patient is in a hospice program, follow the guidelines
provided by the program. A caregiver or family member can request a
hospice nurse to verify the patient's death.
- Contact the appropriate authorities in accordance with local
regulations. If the patient has requested not to be resuscitated
through a Do-Not-Resuscitate (DNR) order or other mechanism, do not
call 911.
- Contact the patient's doctor and funeral home.
- When the patient's family is ready, call other family members,
friends, and clergy.
- Provide or obtain emotional support for family members and friends
to cope with their loss.
- What additional resources offer information about end-of-life
issues?
The following National Cancer Institute (NCI) resources are available
by calling the Cancer Information Service (CIS) (see below) at
1–800–4–CANCER (1–800–422–6237). They can also be accessed on the NCI's
http://www.cancer.gov Web site at http://www.cancer.gov/cancer_information/coping/
by clicking on the title under “End-of-Life Issues.”
- The NCI fact sheet Hospice provides information about
hospice care and includes contact information for hospice
organizations.
- Advance Directives is an NCI fact sheet that discusses a
patient's rights regarding medical treatment.
- The NCI fact sheet Home Care for Cancer Patients provides
information and resources related to home care services.
- The NCI booklet Advanced Cancer: Living Each Day provides
practical support to cancer patients, families, and friends.
- PDQ® supportive
care summaries on loss, grief, and bereavement.
# # #
Sources of National Cancer Institute Information
- Cancer Information Service
- Toll-free: 1–800–4–CANCER (1–800–422–6237)
- TTY (for deaf and hard of hearing callers): 1–800–332–8615
- NCI Online
- Internet
- Use http://www.cancer.gov/ to reach
NCI's Web site.
- LiveHelp
- Cancer Information Specialists offer online assistance through
the LiveHelp link on the NCI's Web site.
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