End-of-Life Care

Providing Care and Comfort

From the National Institute on Aging,

National Institutes of Health

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 Table of Contents

What’s Inside . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3
What Is End-of-Life Care? . . . . . . . . . . . . . . . . . . . . . . . . . . . 4
Making Decisions for Someone at the End of Life . . . . 5
Types of Care: Palliative and Hospice Care . . . . . . . . . . . 9
Different Care Settings at the End of Life . . . . . . . . . . . 14
Understanding Your Loved Ones’ Needs . . . . . . . . . . . . 16
What To Do After Someone Dies . . . . . . . . . . . . . . . . . . . 26
Points To Remember . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 28
For More Information . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 29
Words To Know . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 32

Use the Table of Contents to help find things quickly.

You will also find medical terms in bold, such as
cognitive function. Find how to say these words
and what they mean in the “Words To Know” section
on page 32.
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 What’s Inside

There are many different decisions that need to be made

at the end of life. You may feel more prepared for some of
these than others. Read this booklet to learn about common
situations people encounter at the end of life and how to
approach them.

This booklet will help you learn about:

• What to consider when making

decisions for someone else
• Types of care
• Different care settings
• What to do after someone dies

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 What Is End-of-Life Care?

End-of-life care is the term used to describe the support and

medical care given during the time surrounding death. A
loved one may need care for days, weeks, or even months
before breathing ceases and the heart stops beating. Other
times, death comes suddenly.

How you help care for someone at the end of life will depend
on their specific circumstances. Not all experiences are alike.
Some people may lose physical functions, but their mind
will stay clear. Others may remain physically strong while
their cognitive function declines.

End-of-life care also depends on the person’s preferences,

needs, choices, and finances. While not everyone has the
chance to decide where they will die, individuals and families
can try to plan ahead and make choices that allow for the
most comfort possible.

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 Making Decisions for
Someone at the End of Life
You are likely reading this because someone close to you or
someone you know is dying. You may wonder how you can
comfort the person, prevent or ease suffering, and provide
the best quality of life possible in their remaining time. If
the person can no longer communicate, you may be asked to
make difficult decisions about their care and comfort. This
can be overwhelming for family members, especially if they
have not had a chance to discuss the person’s wishes ahead
of time — or if multiple family members are involved and
do not agree.

Some people have advance directives in place that

outline the care they want if they are unable to speak for
themselves. Or they may have communicated their wishes
to family members verbally. Even if your loved one has
provided written or verbal guidance, some decisions may
not be clear, and you may be called upon to make decisions
on their behalf.

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 Decision-Making Strategies
When making choices for someone else, you can consider
different decision-making strategies to help determine the
best approach for the person.

Substituted judgment. For this approach, you put yourself

in the place of the person who is dying and try to choose as
they would. Some experts believe that decisions should be
based on substituted judgment whenever possible.

Best interests. For this, you determine what you, as their

representative, think is best for the dying person. This is
sometimes combined with substituted judgment.

If you are making decisions for someone at the end of life and
are trying to use one of these approaches, it may be helpful to
think about the following questions:

• Has the person ever talked about what they would want at
the end of life?

• Has the person ever expressed an opinion about someone

else’s end-of-life treatment?

• What are their values and what gives meaning to their life?

Questions To Ask the Health Care Team

To make a decision on someone’s behalf, you will need as
much information as possible from the health care team. The
decisions you are faced with and the questions you may ask
can vary depending on if the person is at home, in a hospital,
or in a care facility.
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Here are a few questions to consider asking:

• What might we expect to happen in the next few hours,

days, or weeks if we continue our current course of
treatment?

• Will treatment provide more quality time with family

and friends?

• What if we don’t want the treatment offered? What

happens then?

• When should we begin hospice care? Can they receive

this care at home or at the hospital? (See page 10 for more
information on hospice care.)

• If we begin hospice, will the person be denied certain

treatments?

• Which medicines will be given to help manage pain and

other symptoms? What are the possible side effects?

• What will happen if our family member stops eating or

drinking? Will a feeding tube be considered? What are
the benefits and risks?

• If we try using a ventilator to help with breathing and

decide to stop, how will that be done?

Understanding and making these decisions can be difficult.

Consider having someone with you to take notes and help
remember details. Don’t be afraid to ask the doctor or nurse
to repeat or rephrase what they said if you are unclear about
something they told you. Keep asking questions until you
have all the information you need to make a decision.

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 Advance Care Planning: What Does
Your Loved One Want?

Advance care planning involves sharing and

discussing potential decisions about medical
care if someone is unable to communicate their
wishes. Having meaningful conversations with
your loved ones about their preferences is the most
important part of advance care planning. A loved one’s
requests can also be included in advance directives.

For example, a durable power of attorney for health

care is an advance directive that identifies someone
— called a health care proxy or health care agent —
to make decisions for a person if they are unable to
communicate their wishes themselves. The health
care proxy can decide on care based on the person’s
values and what they believe the person would want.

Knowing about someone’s wishes and having these

documents in place can help alleviate the pressure
family members and friends may feel if asked to make
difficult medical decisions.

To learn more about advance directives and advance

care planning, visit www.nia.nih.gov/caregiving or
call the NIA Information Center at 800-222-4225.

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 Types of Care: Palliative
and Hospice Care
There are two common types of care that can take place at the
end of life: palliative care and hospice care. Although the
two have some similarities, they differ in several ways.

Palliative Care
Palliative care is specialized medical care for people living
with a serious illness, such as cancer or heart failure. This
type of care can be helpful at any stage of illness. However,
it’s best to start soon after a person receives their diagnosis.

A palliative care team is made up of many different

professionals who work with the patient, family, and
the patient’s other doctors to provide medical, social,
emotional, and practical support. A benefit of palliative care
is that it can be provided in different locations, depending
on preference and need. This includes hospitals, nursing
homes, outpatient palliative care clinics and certain other
specialized clinics, or at home.

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 Hospice Care
Hospice care also focuses on the care, comfort, and quality
of life of a person with a serious illness. However, the main
focus of hospice care is to relieve any symptoms that can
come at the end of life, such as pain and discomfort. Hospice
care does not attempt to treat the person’s illness
or condition.

Hospice care is meant for people who have a serious

illness and a short time to live, often less than six months.
Hospice care can be offered at home or in a facility such as
a nursing home, hospital, or hospice center. Hospice care is
not permanent, and a person can unenroll and reenroll as
needed based on their own decisions and health status.

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 Dolores’ Story

When Dolores was 82, she chose to pursue hospice care

after learning that her kidneys were failing. She had
lived a long, good life and didn’t want to go through
dialysis or pursue any other treatment options. Two
weeks after beginning hospice care, she found out that
her granddaughter was pregnant. She decided for herself
that she didn’t want to use hospice care anymore. Dolores
wanted to continue seeking treatment in hopes of seeing
her future great-grandchild.

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 Similarities and Differences Between
Palliative Care and Hospice Care

Question Palliative Care Hospice

Who can Anyone with a Anyone with a
be treated? serious illness serious illness who
doctors think has
only a short time to
live, often less than
six months

Will my Yes, as much as Yes, as much as

symptoms possible possible
be relieved?

Can I Yes, if you wish No, only symptom

continue relief will be
to receive provided
treatments
to cure my
illness?

Will It depends on Yes, it pays for some

Medicare your benefits and hospice charges
pay? treatment plan

Does It depends on It depends on

private the plan the plan
insurance
pay?

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Question Palliative Care Hospice
How long This depends on As long as you meet
will I be what care you the hospice’s criteria
cared for? need and your of an illness with a
insurance plan life expectancy of
months, not years

Where will • Home • Home

I receive • Assisted living • Assisted living
this care? facility facility
• Nursing home • Nursing home
• Hospital • Hospice facility
• Palliative care • Hospital
clinic

Source:
www.nhpco.org/palliativecare/explanation-of-palliative-care.
Copyright © National Hospice and Palliative Care
Organization. All rights reserved.

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 Different Care Settings at
the End of Life
The three most common places people at the end of life
die are at home, in a hospital, or in a care facility. When it’s
possible to choose where a person will die, several factors
can go into this decision. These include knowing the type of
care the person needs and wants, where they can receive this
level of care, advance care directives, costs, and availability of
family and friends to help.

Home Care
Most people choose to receive end-of-life care at home. It’s
the most private setting and the person may feel comforted
knowing they’re in a familiar environment where friends and
family can visit freely. Services such as visiting nurses, hospice
and palliative care, and special equipment such as a hospital
bed or bedside commode, can be arranged to be at the home.

Ask for Help When You Need It

Caring for someone who is at the end of life at home

can be physically, emotionally, and financially
demanding for those providing the care. Extra support
from paid caregivers or home service providers, also
known as respite care, can help. You local Area
Agency on Aging may be able to recommend other
sources of help. Visit https://eldercare.acl.gov or
call 800-677-1116 to find services in your area.

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Hospital Care
If a person receives end-of-life care in a hospital, they will
have direct access to medical professionals who understand
the needs of a dying person. This can be reassuring to both
the person and their family.

In addition to the regular care team, some hospitals

have palliative and hospice care teams that can assist with
managing uncomfortable symptoms at the end of life,
such as digestive issues or pain. These teams can also help
with making medical decisions for patients or families if
plans are not already in place.

Nursing Homes and Other Care Facilities

It’s common for people who are already in long-term care
facilities such as a nursing home to receive end-of-life care
there. Many people choose this option because they already
have a relationship with staff who work there, which can help
make the care feel more personal than in a hospital. In other
cases, someone may be discharged from a hospital to a
long-term care facility to receive care.

In a nursing home, nursing staff are always present. Unlike a

hospital, a doctor is not always in the facility but is available
when needed. However, like in a hospital, palliative care and
hospice care can both be accessed in long-term care facilities.

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 Understanding Your Loved
Ones’ Needs
No matter where end-of-life care takes place, there may be
steps you can take to increase the likelihood of a peaceful and
respectful death for your loved one.

Generally speaking, people who are dying need support in

four areas:

• Physical comfort
• Mental and emotional needs
• Spiritual needs
• Practical tasks

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Physical Comfort
There can be many sources of discomfort during the dying
process. Depending on the cause of the discomfort, there
may be things you or a health care provider can do to help
make the dying person more comfortable.

Breathing problems. Shortness of breath or the feeling

that breathing is difficult is a common experience at the end
of life. The doctor might call this dyspnea. To help ease
breathing for your loved one, try raising the head of the bed,
opening a window, using a humidifier, or running a fan to
circulate air in the room. Sometimes, morphine or other pain
medications can help relieve the sense of breathlessness.

There may be times when a dying person has an abnormal

breathing pattern, known as Cheyne-Stokes respirations.
The person’s breathing may alternate between deep, heavy
breaths and shallow or even no breaths. Some people very
near death might have noisy breathing. In most cases, this
noisy breathing does not upset the dying person, though it
may be alarming to family and friends. You may try turning
the person on one side to rest or elevating their head.
Prescription medicine may also help.

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 Skin irritation. Skin problems can be very uncomfortable
for a person who is dying. Try to keep the person’s skin clean
and moisturized. Alcohol-free lotion, petroleum jelly, eye
cream or gel, or a damp cloth can help to relieve itching and
dryness, especially on parts of the face. If the inside of the
mouth seems dry, try giving them ice chips (if the person is
conscious) or wiping the inside of the person’s mouth with a
damp cloth, cotton ball, or specially treated swab.

If the person is sitting or lying in one position, it can put

constant pressure on sensitive skin, which can lead to painful
bedsores (sometimes called pressure ulcers). Watch carefully
for bedsores, especially on the heels, hips, lower back, and
back of the head.

Turning the person in bed every few hours may help prevent
bedsores and stiffness. Try putting a foam pad under the
person’s heels or elbows to raise them off the bed and reduce
pressure. Ask a member of the health care team if a special
mattress or chair cushion might also help.

Temperature sensitivity. When a person is close to death,

their hands, arms, feet, or legs may be cool to the touch.
Some parts of the body may become darker or blueish. People
who are dying may not be able to tell you that they are too hot
or too cold, so watch for clues. For example, someone who
is too warm might repeatedly try to remove a blanket and
someone who is too cold may be shivering.

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Digestive problems. Nausea, vomiting, swallowing,
constipation, and loss of appetite are common at the end of
life. The causes and treatments for these symptoms vary,
so talk with a doctor or nurse about what you’re seeing.
Medicines can help control nausea or vomiting or relieve
constipation, all of which are common side effects of strong
pain medications.

If the person loses their appetite, try gently offering favorite

foods in small amounts. Serve frequent, smaller meals rather
than three larger ones. Help feed your loved one if they want
to eat but are too tired or weak. But don’t force a dying person
to eat. Losing one’s appetite is a common and normal part
of dying. Going without food and/or water is generally not
painful, and eating and drinking can add to a dying person’s
discomfort. A conscious decision to give up food can be part
of a person’s acceptance that death is near.

Fatigue. It is common for people nearing the end of life

to feel tired and have little or no energy. Try to make
things easier for them. For example, they can use a bedside
commode instead of walking to the bathroom. Providing a
stool so the person can sit in the shower, or sponge baths in
bed, can also help.

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 Pain. Not everyone who is dying experiences pain. For those
who do, experts believe that care should focus on relieving
pain without worrying about possible long-term problems of
drug dependence or substance use disorders.

Struggling with severe pain can be draining and can make the
dying person understandably angry or short-tempered. This
can make it even harder for families and other loved ones to
communicate with the person in a meaningful way.

Caregivers and other family members can play significant

roles in managing a dying person’s pain. But knowing how
much pain someone is in can be difficult. Watch for clues,
such as trouble sleeping, showing increased agitation, or
crying. Don’t be afraid of giving as much pain medicine as
is prescribed by the doctor. Pain is easier to prevent than to
relieve, and severe pain is hard to manage. Try to make sure
that the level of pain does not get ahead of pain-relieving
medicines. Talk with the health care team if the pain is not
controlled. Medicines can be increased or changed.

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 What About Morphine and
Other Painkillers?
Morphine is an opiate, a strong drug used to treat
serious pain. Sometimes, morphine is also given to
ease the feeling of shortness of breath. Successfully
reducing pain and addressing concerns about
breathing can provide needed comfort to someone
who is close to dying. Side effects may include
confusion, drowsiness, or hallucinations. Talk
with the person’s health care team if you have any
questions about the side effects of morphine or other
pain medications.

Mental and Emotional Needs

When someone is nearing the end of life, they may feel
depressed or anxious. Others may experience mental
confusion and may have strange or unusual behavior, making
it harder to connect with their loved ones. As a caregiver or
family member, try to be present and listen to their concerns.
If their emotional pain heightens, you may want to contact
a counselor, possibly one familiar with end-of-life issues, to
encourage conversations about their feelings. Medicine may
help if the person’s depression or anxiety is severe.

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 Dementia and End-of-Life Care

Caregivers often experience special challenges

surrounding the end of life for someone with
Alzheimer’s disease or a related dementia. People
with dementia gradually lose their ability to think,
remember, and communicate, which can make
caregiving and related decisions more difficult. Below
are some considerations for end-of-life care for people
with dementia.

• Considering quality of life. Medications are

available that may help with some symptoms,
but caregivers may not want medicines or other
treatments prescribed for people in the later stages
of dementia if the side effects outweigh the benefits.

• Connecting. Caregivers may find it hard to provide

emotional or spiritual comfort. Sensory connections
involving hearing, touch, or sight may help bring
comfort. For example, receiving a massage can
be soothing or listening to music, white noise, or
sounds from nature may help lessen agitation. Just
being present can be calming to the person.

• Coping. People often live with dementia for years.

It is not uncommon for caregivers to feel a sense of
relief when death happens. Such feelings are normal.
Hospice care experts can provide support to family
caregivers of a person near the end of life as well as
help with their grief.

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Spiritual Needs
At the end of life, some people may want to address their
spiritual needs. These needs may include finding meaning
in one’s life, ending disagreements with others, or making
peace with life circumstances. The person can also talk
with someone from their religious community, such as
a minister, priest, rabbi, or imam. Family members and
loved ones can also help. Sharing memories can help bring
comfort to both people.

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 Practical Tasks
Everyday tasks, such as picking up the mail, answering the
phone, or feeding a pet, can be a source of worry for someone
who is dying and can overwhelm a caregiver. A family
member or friend can provide the caregiver with a much-
needed break by helping with small daily chores.

A person who is dying might also be worried about who

will take care of things when they are gone. Talk with them
about their concerns. Offer reassurance that everything will
be taken care of, which may help provide a measure of peace.
You may also remind the dying person that their personal
affairs are in good hands.

Helping Out the Caregiver

Caregivers can be overwhelmed when the person they

are taking care of is near the end of life. If you’re in a
position to offer some relief to the main caregiver, here
are a few questions to ask:
• How are you doing? Do you need someone to
talk with?
• Do you want to take an hour for yourself?
I can stay here while you’re out.
• I’m headed to the store later. What can I pick
up for you?
• I’m in the neighborhood, and I’m happy to stop by
and take the dog out. Would that be helpful to you?

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 Mark’s Story

When Mark was caring for his wife in hospice, he felt

overwhelmed by the chores he couldn’t tend to. There
were dishes in the sink, trash that needed to be taken out,
and he wasn’t able to respond to everyone who called
about his wife’s condition. He was so relieved when his
brother came into town and offered to help take care
of things around the house. Mark was able to focus his
attention on his wife’s care, while knowing that everyday
things were being taken care of.

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 What To Do After
Someone Dies

What to do after someone dies depends on where the person

died. If someone dies at home, there is no need to move
the body right away. If the person was in hospice, a plan for
what happens after death will likely already be in place. If the
person wasn’t in hospice, talk with the doctor, local medical
examiner (coroner), local health department, or a funeral home
representative about how to proceed.

Arrangements should be made to pick up the body as soon

as the family is ready and according to local laws. This can be
done by a funeral home or by the family themselves in most
states. The hospital or nursing facility, if that is where the
death took place, may help with these arrangements.

As soon as possible after death, it must be officially

pronounced by someone in authority such as a doctor in a
hospital or nursing facility, or a hospice nurse. The person
who declares death also fills out forms certifying the cause,
time, and place of death. These steps will make it possible
for an official death certificate to be prepared. This legal form
is necessary for many reasons, including life insurance and
financial and property issues.

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In the weeks following the person’s death, you will want to
notify places about your loved one’s passing. This may include:
• The Social Security Administration
• Life insurance companies
• Credit card companies
• Banks and financial institutions

If your loved one had plans to be a brain donor, when

death occurs, you will need to connect with the donation
coordinator within two hours of death. If the person dies in a
care facility or hospital and chose to be an organ donor, a local
Organ Procurement Organization (OPO) will recover the
organs for transplantation. In most cases, if the person is near
death or dies in the hospital, the hospital is responsible for
informing the local OPO.

Getting Help With Grief

As a caregiver or family member, you may feel a mix

of emotions when a loved one passes. These emotions
may include sadness, relief, confusion, or numbness.
It’s important to know that all of these feelings are
normal — there is no right way to grieve. While there
are many steps and decisions to make after someone
passes, it’s important to remember to take time for
yourself. Try to eat healthy foods regularly, exercise,
and find time to socialize with friends and family.
Joining a support group may also be helpful. Talk with
your health care provider if your grief persists or if you
are having trouble completing daily tasks.

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 Points To Remember
• Making decisions for someone at the end of life can
be difficult. If possible, start discussions early about the
person’s wishes and have advance directives in place.

• There are different places where a person can receive

end-of-life care. If it’s not stated in their advance care
documents, make a decision about where the person
will receive care based on their individual needs and
preferences.

• Care can come in many forms at the end of life.

Talk with the person’s health care team to find the best
ways to help manage their comfort.

• After the person dies, you will need to make

arrangements. Hospice and hospital staff can help get a
legal pronouncement of death. However, you may need to
follow up with different institutions and agencies in the
weeks following the person’s death.

• Grief comes in many different forms. It’s important to

find time to take care of yourself. If your grief persists, talk
with your health care provider.

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 For More Information

Centers for Medicare & Medicaid Services

800-633-4227
877-486-2048 (TTY)
www.cms.gov
www.medicare.gov

Eldercare Locator
800-677-1116
[email protected]
https://eldercare.acl.gov

MedlinePlus
National Library of Medicine
www.medlineplus.gov

Organdonor.gov
Health Resources & Services Administration
www.organdonor.gov

American Geriatrics Society

800-247-4779
[email protected]
www.americangeriatrics.org

Center to Advance Palliative Care

212-201-2670
[email protected]
www.getpalliativecare.org

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 Family Caregiver Alliance
800-445-8106
[email protected]
www.caregiver.org

Hospice Foundation of America

800-854-3402
[email protected]
www.hospicefoundation.org

National Hospice and Palliative Care Organization

703-837-1500
[email protected]
www.nhpco.org

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 To Learn More About
Health and Aging
National Institute on Aging Information Center
800-222-2225
800-222-4225 (TTY)
[email protected]
www.nia.nih.gov

Visit www.nia.nih.gov/health to find more health and

aging information from NIA and subscribe to email alerts.
Visit https://order.nia.nih.gov to order free
print publications.

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 Words To Know

Cheyne-Stokes respirations
(chain-stowks reh-spr-ay-shunz)
A rare abnormal breathing pattern that can occur while
awake but usually occurs during sleep.

Cognitive function
(kog-ni-tiv FUNK-shuhn)
Refers to mental abilities, including learning, thinking,
reasoning, remembering, problem-solving, decision-making,
and attention.

Commode
(kuh-mowd)
A portable toilet that can be placed at the bedside of someone
who has limited mobile function.

Dyspnea
(DISP-nee-uh)
Shortness of breath.

Hospice care
(HOS-pis kayr)
An approach to care that focuses on the care, comfort,
and quality of life of a person with a serious illness who is
approaching the end of life.

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Long-term care facility
(long-turm kayr fuh-SIL-uh-tee)
Facilities that provide a variety of services, both medical
and personal care, to people who are unable to live
independently.

Palliative care
(PA-lee-uh-tiv kayr)
A specialized medical care for people living with a serious
illness. This care is meant to enhance a person’s current care
by focusing on quality of life for them and their family.

Respite care
(REH-spit kayr)
A service that can provide short-term relief to caregivers.

33
 National Institute
on Aging

NIH Publication No. 22-AG-6036

November 2022

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