Hospice Care and End of Life Issues
God, grant me the serenity
to accept the things I cannot change, the
courage to change the things I can, and the
wisdom to know the difference.
— St. Francis
When a patient and her healthcare
team decide that the cancer can no longer
be controlled or improved with treatment,
they may choose to end treatment. Palliative
care may begin, focusing on making the patient
comfortable. This often includes medications
and treatment, but these are used for controlling
pain and other symptoms.
Patients and their
family members often want to know how long
a person is expected to live. This can
be a difficult question to answer. 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 might also be fearful of instilling
false hope or destroying a person’s
The time at the end of life
is different for each person. Each individual
has unique needs for information, care and
support. Some of the issues that may arise
include spiritual, psychological, legal,
medical and financial ones. If you and your
family are able to plan ahead, the situation
may be less stressful or traumatic, and more
peaceful, for everyone involved.
are available to help patients and their
families with the medical, psychological,
and spiritual issues surrounding dying.
A hospice agency often provides such services
(more about hospice later in the section).
SUGGESTIONS FOR THE PERSON FACING THE END
Talk about death and make your
wishes known. Rarely, if ever, do we have
conversations about how we want to live
in the final phase of our lives. It is
important to have thoughtful and serious
discussions with your loved ones about
what you want as the end of life draws
near. The time to discuss your views
about end-of-life care is before a crisis
Plan ahead. Let your loved
ones know what you want while you are able
to communicate your preferences for care.
Continue to have regular discussions
about your views, as they may change
over time. Plan ahead by drawing up
advance directives (legal papers which
allow people to state their decisions
about end-of-life care ahead of time).
Advance directives can usually be obtained
from your healthcare provider or hospital.
They can be changed at any time, even
after they are signed. You don’t
need a lawyer to complete an advance
directive, but each state has its own
laws for creating them. For more information
and assistance with advance directives,
see the Resources at the end of this
section. Advance directives include:
Will. A set of written instructions
recording a person’s wishes
about medical care intended to keep
the person alive. It is used if a
patient becomes terminally ill, cannot
function, or is not able to communicate
or make decisions. A living will
protects the patient’s rights
and removes the burden of making
decisions from family, friends and
• Health Care Proxy. The patient chooses
someone who makes medical decisions if the
patient is unable to do so. Generally, people
assign someone they know well and trust to
represent their wishes when they can no longer
• Durable Power of Attorney for Health
Care. A legal paper that names a person’s
health care proxy. Once written, it should
be signed, dated, witnessed, notarized, copied,
distributed and put into the patient’s
• Durable Power of Attorney for Finances.
A separate legal paper from the Durable
Power of Attorney for Health Care. It appoints
someone to manage the patient’s
financial affairs if the patient
is unable to do so.
Be sure to tell
your doctor or your healthcare team
about what you want regarding end-of-life
care. Your doctor needs to know what
is important to you to help in making
decisions about your care. Let your
doctor know if you have appointed
a healthcare proxy and who that person
is. It is important to remember that
plans aren’t always permanent
and that your care can be changed
if your wishes or your condition
What are some ways that caregivers
can provide emotional comfort?
Everyone has different needs, but some
emotions are common to many people
who are dying, including fear of abandonment
and fear of being a burden. There may
also be concerns about loss of dignity
and loss of control.
Some ways caregivers
can provide comfort are as follows:
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, and look through pictures and scrapbooks
- 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 is hospice?
Hospice provides compassionate
care to people at the end of their
lives. Hospice involves healthcare
providers and volunteers who provide
medical, psychological and spiritual
support to terminally ill patients
and their loved ones. The focus
of hospice is quality of life—peace,
comfort, and dignity. A major aim of hospice
is to control pain and other symptoms so
the patient can remain as alert and comfortable
Hospice services are available
to persons who are no longer being
treated for their cancer (other
than treatments that help with
pain or other symptoms). The typical
hospice patient has a life expectancy
of six months or less. Hospice
programs provide services in various
settings: the home, hospice centers,
hospitals or skilled nursing facilities.
Patients’ families are also an important
focus of hospice care, and
services are designed to provide them with the help, information
and support they need.
can be an invaluable service to patients at the end
of life and their families. Doctors
and healthcare providers are
usually focused on making patients
better. They often are not experts
about end of life issues and
People who work in hospice
are experts about death and dying and the
kinds of issues that a patient and his
or her family face. For example, they
can provide medications to keep
the patient comfortable. They may
be the ones to alert the family when the patient
is nearing death. Many hospices
have grief support groups to help
family and friends after the patient’s death.
Does Hospice Care Work?
follows a team-oriented approach
to medical care, pain management, and
spiritual support. It is tailored
to the patient’s needs and
wishes. Hospice staff are on call
24 hours a day, seven days a week.
provide medical direction to
- Nurses provide regular
home care to monitor the patient’s
condition and provide care to
maintain the patient’s
- Home health aides
attend to the patient’s personal
- Counselors and clergy
provide counseling to the patients
and loved ones.
- Medications, medical
equipment, and medical supplies
- Volunteers support
the patient and family according
to their needs.
do I find hospice care?
Sometimes, a doctor
refers a patient to hospice care after
treatment for the person’s
cancer has ended. Be sure to ask for
a referral if the doctor does not do
You can also ask the
nurse, medical social worker or discharge
planner for a referral or to help you find
the hospice agencies in your area. Also,
see Resources at end of this section.
do I pay for hospice care?
Medicare, Medicaid and most private
health insurance companies cover hospice
care for patients who meet the eligibility
criteria. There may be co-pays and
deductibles that apply. Most hospice
services are based upon need rather
than the ability to pay. Before services
begin, find out what the costs will
be and what is or is not covered.
The Medicare Hospice Benefit is designed
to meet the needs of those who have
a terminal illness, providing them
and their loved ones with special support
and services not otherwise covered
by Medicare. Call 800.633.4227 or see
www.medicare.gov for more information
about Medicare and hospice.
this section were adapted from educational
publications about end of life care
and hospice from the National Cancer Institute,
800.4.CANCER or www.cancer.gov.
Advocates for the needs of elders
and their caregivers, with emphasis
on improving care for those at the
end of life. Offers the Five Wishes
advance directive (legally valid
in North Carolina).
American Cancer Society
800.ACS.2345 or 866.228.4327 (TTY)
Provides information and services
for all forms of cancer, diagnosis,
treatment and many other topics.
Free educational materials available
on a wide variety of topics relating
to cancer, including hospice.
for Home Care and Hospice
of North Carolina (Raleigh, NC)
919.848.3450 or 800.999.2357 (in North
Call to get
locations and services of hospices and
home care in your area of North Carolina.
Has educational booklets.
212.221.3300 or 800.813.HOPE (4673)
free. Staffed by social work professionals
who provide counseling, tips and support,
including for end of life issues and
filling out advance directives. Has information
about end-of-life issues and hospice.
Carolinas Center for
Hospice and End of Life Care
919.677.4100 or 800.662.8859
for patients and providers about hospice.
Web site has a “hospice
assist in finding
a hospice near you.
hospice that can
be ordered for a fee or
downloaded free from the
Hospice Education Institute
207.255.8800 or 800.331.1620
and referrals about hospice and palliative
care and issues relating to caring for the dying
and the bereaved.
videos, brochures and a newsletter (Journeys)
about hospice, living with grief, and
a Guide to Recalling and Telling
Your Life Story.
National Cancer Institute’s
One of the best resources
available for cancer patients, this government
organization provides the toll-free
hotline above in English and Spanish
for questions about any type of cancer.
Has several booklets about end of life
care, advance directives and hospice.
Family Caregivers Association
301.942.2302 or 800.896.3650
and advocacy for caregivers. Free
membership for caregivers includes
a newsletter and welcome kit.
Hospice and Palliative Care Organization
703.837.1500 or 800.658.8898 (Helpline)
hospice, how to select a program, communicating
end-of-life wishes, Medicare and
finding a hospice program close
to you. Staff can answer calls
in Spanish and some Spanish-language
Partnership for Caring:
for the Dying
and families participate
in end-of-life decision
making. Has educational
booklets and videos about end-of-life
issues. Provides state-specific
living wills and medical powers of
Books and More
of Home: An Illustrated Step-by-Step
Guide for Caregivers, by Maria M. Meyer
with Paula Derr, RN (2002). Covers
caregiving basics, including home preparations,
dealing with emergencies, bathing and
Dying Well: Peace and
the End of Life, by Ira Byock, MD (1998). A book with
the message that the
immediacy of death can give rare opportunities for emotional and spiritual
by Joan Furman
Addresses concerns such as location
of care, importance of basic nursing
skills, and recognizing the signs of
a failing body.
Facing Death and Finding
Hope: A Guide for
the Emotional and Spiritual Care of the Dying, by Christine
Written by a widow who lost her husband to leukemia, the book
typical fears and struggles experienced by the dying and their families.
Tibetan Buddhist perspective on death.
Available in Spanish.
Final Gifts: Understanding
the Special Awareness,
Needs and Communications of the Dying, by Maggie
Callanan and Patricia Kelly (1997).
Two hospice nurses give insights into the
experience of dying.
Handbook for Mortals:
Guidance for People Facing Serious
Illness, by Joanne
Lynn and Joan Harrold (1999). A guide
to end-of-life care that includes advice
on making care decisions, finding treatment
and support resources, and communicating
The Hospice Choice: In
Pursuit of a Peaceful Death,
by Marcia Lattanzi-Licht, John Mahoney
and Galen Miller (1998). This book from
the National Hospice Organization introduces
the philosophy and practice of hospice
Place, by Warren Hanson
(1997). This lovely, peaceful book was
written to help adults explain death
to children. In this children’s
adults affirm their own belief in life
beyond this world.
Share the Care: How to
Organize a Group to Care
for Someone Who is Seriously
Ill, by Cappy Capposela
and Sheila Warnock (1995). A guide
on how to organize a group of caregivers,
including advice on burnout and spreading
She Came to Live Out
Loud: An Inspiring
Family Journey Through Illness, Loss and Grief, by Myra
MacPherson (1999). Gives
advice for dealing with grief, drawing on the author’s
personal experience with the family and friends of
a dying woman.
Tuesdays With Morrie:
An Old Man,
A Young Man and Life’s Greatest Lessons,
Mitch Albom (1997). An account of the author’s
those dealing with
cancer and hospice
Compassion in Dying
National advocacy organization to improve
pain and symptom management, and expand
end-of-life choices. Has advocacy, legal
and support materials.
Dying Well: Defining
the End of Life
The web site of Dr.
Ira Byock, author of
Dying Well: Peace and
Possibilities at the
End of Life. Resources
for people facing life-limiting
This public online support group
people facing the death of a loved one.
Fernside: For Grieving Children
Has information on how to help
child following the death of a loved one. Includes
just for children.
An Internet community
of people dealing with
grief, death and major
loss. Offers 47 e-mail
support groups dealing
with assorted grief issues.
Inc.: Online Community for End of Life
Has end-of-life care resources,
on grief, care for the dying, major illness,
hospice and more.
Home Care Guide
for Advanced Cancer, from the American College of
Guide for understanding
what happens to patients
terminally ill with advanced
Contains information about many
issues. Provides information and support
for patients, families and caregivers.
A national coalition to improve
care and caring at the end of life.
Offers a Palliative Care Resource Center,
(a personal story about a breast cancer
patient) and Last Chapters (personal stories).
in a process that is
healing to both. Volunteer
Listeners guide mothers
in reviewing their lives
and recording their stories for their
On Our Own Terms: Moyers
the PBS series
on dying and end-of-life
care. Has information
and resources on
care, grief and
comfort, final days, and
therapy and support.