Helping with Comfort and Care

End of Life

U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES

National Institute 

on Aging
National Institute on Aging

Office of Communications and Public Liaison

Bethesda, MD 20892-2292

www.nia.nih.gov
End of Life

Helping with Comfort and Care

 3 Introduction 

 5 Providing Comfort at the End of Life 

19 Care Options at the End of Life 

34 Dementia at the End of Life 

39 Understanding Healthcare Decisions 

51 What Happens When Someone Dies 

54 Things to Do after Someone Dies

58 Getting Help for Your Grief

61 Planning for End-of-Life Care Decisions

68 Closing Thoughts

69 Resources
2

Empty-handed I entered the world, 

Barefoot I leave it. 

 My coming, my going 

Two simple happenings 

That got entangled.

 — Kozan Ichikyo (d. 1360)
At the end of life, each story is different. Death comes suddenly, or a 

person lingers, gradually fading. For some older people, the body weakens 

while the mind stays alert. Others remain physically strong, but cognitive 

losses take a huge toll. Although everyone dies, each loss is personally felt 

by those close to the one who has died.

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

given during the time surrounding death. Such care does not happen 

only in the moments before breathing ceases and the heart stops beating. 

Older people often live with one or more chronic illnesses and need a lot 

of care for days, weeks, and even months before death.

The goal of End of Life: Helping with Comfort and Care is to provide 

guidance and help in understanding the unfamiliar territory of death. 

This information is based on research, such as that supported by the 

National Institute on Aging (NIA), along with other parts of the National 

Institutes of Health. It also includes suggestions from healthcare providers 

with expertise in helping individuals and families through this difficult 

Introduction

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INTRODUCTION

time. Most of the stories included are examples of common experiences 

at the end of life.

When a doctor says something like, “I’m afraid the news is not good. 

There are no other treatments for us to try. I’m sorry,” it may close the 

door to the possibility of a cure, but it does not end the need for medical 

support. Nor does it end the involvement of family and friends. 

There are many ways to provide care for an older person who is dying. 

Such care often involves a team. If you are reading this, then you might 

be part of such a team.

End of Life: Helping with Comfort and Care provides an overview of 

issues often faced by people caring for someone nearing the end of life. 

The information provided here does not replace the personal and specific 

advice of the doctor or other experts, but it can help you make sense of 

what is happening and give you a framework for making care decisions. 

A sampling of resources related to end-of-life care are provided if you are 

looking for more information.

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Comfort care is an essential part of medical care at the end of life. It is 

care that helps or soothes a person who is dying. The goals are to prevent 

or relieve suffering as much as possible and to improve quality of life 

while respecting the dying person’s wishes.

You are probably reading this because someone close to you is dying. You 

wonder what will happen. You want to know how to give comfort, what to 

say, what to do. You might like to know how to make dying easier—how 

to help ensure a peaceful death, with treatment consistent with the dying 

person’s wishes.

A peaceful death might mean something different to you than to someone 

else. Your sister might want to know when death is near so she can have a few 

last words with the people she loves and take care of personal matters. Your 

husband might want to die quickly and not linger. Perhaps your mother has 

said she would like to be at home when she dies, while your father wants to be 

in a hospital where he can receive treatment for his illness until the very end.

Some people want to be surrounded by family and friends; others want 

to be alone. Of course, often one doesn’t get to choose. But, avoiding 

Providing Comfort

at the End of Life

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PROVIDING COMFORT

suffering, having your end-of-life wishes followed, and being treated 

with respect while dying are common hopes.

Generally speaking, people who are dying need care in four areas—

physical comfort, mental and emotional needs, spiritual issues, and 

practical tasks. Their families need support as well. In this section, 

you will find a number of ways you can help someone who is dying. 

Always remember to check with the healthcare team to make sure these 

suggestions are appropriate for your situation.

Comfort needs near the end of life:

▪ Physical Comfort

▪ Mental and Emotional Needs

▪ Spiritual Issues

▪ Practical Tasks

Physical Comfort 

There are ways to make a person who is dying more comfortable. 

Discomfort can come from a variety of problems. For each, there are 

things you or a healthcare provider can do, depending on the cause. For 

example, a dying person can be uncomfortable because of:

Pain

▪ Breathing problems

▪ Skin irritation

▪ Digestive problems

▪

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END OF LIFE: HELPING WITH COMFORT AND CARE

▪ Temperature sensitivity

▪ Fatigue

Pain. Watching someone you love die is hard enough, but thinking 

that person is also in pain makes it worse. Not everyone who is dying 

experiences pain, but there are things you can do to help someone who 

does. Experts believe that care for someone who is dying should focus on 

relieving pain without worrying about possible long-term problems of 

drug dependence or abuse.

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. Tell the doctor or nurse if the pain is not 

controlled. Medicines can be increased or changed. If this doesn’t help, 

then ask for consultation with a palliative medical specialist who has 

experience in pain management for seriously ill patients (see Palliative 

Care, page 20).

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. Pain medication can make people confused

or drowsy. You might have heard that giving morphine leads 

to a quicker death. Is that true? Most experts think this is 

unlikely, especially if increasing the dose is done carefully. 

Successfully reducing pain and/or concerns about breathing 

can provide needed comfort to someone who is close to dying.

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PROVIDING COMFORT

Struggling with severe pain can be draining. It can make it hard for families 

to be together in a meaningful way. Pain can affect mood—being in pain can 

make someone seem angry or short-tempered. Although understandable, 

irritability resulting from pain might make it hard to talk, hard to share 

thoughts and feelings.

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 (disp-NEE-uh). Worrying about the next breath can 

make it hard for important conversations or connections. Try raising 

the head of the bed, opening a window, using a humidifier, or having 

a fan circulating air in the room. Sometimes, morphine or other pain 

medications can help relieve the sense of breathlessness.

People very near death might have noisy breathing, sometimes called 

a death rattle. This is caused by fluids collecting in the throat or by 

the throat muscles relaxing. It might help to try turning the person to 

rest on one side. There is also medicine that can be prescribed that may 

help clear this up. Not all noisy breathing is a death rattle. It may help 

to know that this noisy breathing is usually not upsetting to the dying 

person, even if it is to family and friends.

Skin irritation. Skin problems can be very uncomfortable. With age, 

skin naturally becomes drier and more fragile, so it is important to take 

extra care with an older person’s skin. Gently applying alcohol-free lotion 

can relieve dry skin and be soothing.

Dryness on parts of the face, such as the lips and eyes, can be a common 

cause of discomfort near death. A lip balm could keep this from getting 

worse. A damp cloth placed over closed eyes might relieve dryness. If the 

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END OF LIFE: HELPING WITH COMFORT AND CARE

inside of the mouth seems dry, giving ice chips (if the person is conscious) or 

wiping the inside of the mouth with a damp cloth, cotton ball, or specially 

treated swab might help.

Sitting or lying in one position puts constant pressure on sensitive skin, 

which can lead to painful bed sores (sometimes called pressure ulcers). 

When a bed sore first forms, the skin gets discolored or darker. Watch 

carefully for these discolored spots, especially on the heels, hips, lower 

back, and back of the head.

Turning the person from side to back and to the other side every few 

hours may help prevent bed sores. Try putting a foam pad under an area 

like a heel or elbow to raise it off the bed and reduce pressure. Ask if a 

special mattress or chair cushion might also help. Keeping the skin clean 

and moisturized is always important.

Digestive problems. Nausea, vomiting, constipation, and loss of appetite 

are common issues at the end of life. The causes and treatments for these 

symptoms are varied, so talk to a doctor or nurse right away. There are 

medicines that can control nausea or vomiting or relieve constipation, a 

common side effect of strong pain medications.

If someone near death wants to eat but is too tired or weak, you can 

help with feeding. To address loss of appetite, try gently offering favorite 

foods in small amounts. Or, try serving frequent, smaller meals rather 

than three big ones. 

You don’t have to force a person to eat. Going without food and/or water 

is generally not painful, and eating can add to discomfort. Losing one’s 

appetite is a common and normal part of dying. Swallowing may also be 

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PROVIDING COMFORT

a problem, especially for people with dementia. A conscious decision to 

give up food can be part of a person’s acceptance that death is near.

Temperature sensitivity. 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. You 

can take off the blanket and try a cool cloth on his or her head. 

If a person is hunching his or her shoulders, pulling the covers up, or 

even shivering—those could be signs of cold. Make sure there is no draft, 

raise the heat, and add another blanket. Avoid electric blankets because 

they can get too hot.

Fatigue. It is common for people nearing the end of life to feel tired and 

have little or no energy. Keep activities simple. For example, a bedside 

commode can be used instead of walking to the bathroom. A shower 

stool can save a person’s energy, as can switching to sponging off in bed.

Meena’s Story

At 80, Meena had been in a nursing home for 2 years after a stroke, when 

her health declined, and she was no longer able to communicate her wishes. 

Meena’s physician, Dr. Torres, told her family she was dying. She said that 

medical tests, physical therapy, and intravenous treatments were no longer 

really needed and should be stopped because they might be causing Meena 

discomfort. Dr. Torres also said that checking vital signs (pulse, blood 

pressure, temperature, and breathing rate) was interrupting her rest and 

would no longer be done regularly.

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END OF LIFE: HELPING WITH COMFORT AND CARE

Then, Meena developed pneumonia. Her family asked about moving her 

to the hospital. Dr. Torres explained that Meena could get the same care in 

the familiar surroundings of her nursing home. Besides, the doctor said, a 

move could disturb and confuse her. The family agreed to leave Meena in 

the nursing home, and she died 2 days later surrounded by those close to her. 

Experts suggest that moving someone to a different place, like a hospital, close 

to the time of death, should be avoided if possible.

Mental and Emotional Needs

Complete end-of-life care also includes helping the dying person manage 

mental and emotional distress. Someone who is alert near the end of life 

might understandably feel depressed or anxious. It is important to treat 

emotional pain and suffering. Encouraging conversations about feelings 

might help. You might want to contact a counselor, possibly one familiar 

with end-of-life issues. If the depression or anxiety is severe, medicine 

may help.

A dying person may also have some specific fears and concerns. He or she 

may fear the unknown or worry about those left behind. Some people 

are afraid of being alone at the very end. This feeling can be made worse 

by the understandable reactions of family, friends, and even the medical 

team. For example, when family and friends do not know how to help 

or what to say, sometimes they stop visiting. Or, someone who is already 

beginning to grieve may withdraw.

Doctors may feel helpless because they can’t cure their patient. Some 

seem to avoid a dying patient. This can add to a dying person’s sense 

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PROVIDING COMFORT

of isolation. If this is happening, discuss your concerns with the family, 

friends, or the doctor.

The simple act of physical contact—holding hands, a touch, or a gentle 

massage—can make a person feel connected to those he or she loves. It 

can be very soothing. Warm your hands by rubbing them together or 

running them under warm water.

Try to set a comforting mood. Remember that listening and being 

present can make a difference. For example, Gordon loved a party, so it 

was natural for him to want to be around family and friends when he 

was dying. Ellen always liked spending quiet moments with one or two 

people at a time, so she was most comfortable with just a few visitors.

Some experts suggest that when death is very near, music at a low volume 

and soft lighting are soothing. In fact, near the end of life, music therapy 

might improve mood, help with relaxation, and lessen pain. Listening 

to music might also evoke memories those present can share. For 

some people, keeping distracting noises like televisions and radios to a 

minimum is important.

Often, just being present with a dying person is enough. It may not be 

necessary to fill the time with talking or activity. Your quiet presence can 

be a simple and profound gift for a dying family member or friend.

Spiritual Issues

People nearing the end of life may have spiritual needs as important as 

their physical concerns. Spiritual needs include finding meaning in one’s 

life and ending disagreements with others, if possible. The dying person 

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END OF LIFE: HELPING WITH COMFORT AND CARE

might find peace by resolving unsettled issues with friends or family. 

Visits from a social worker or a counselor may also help. 

Many people find solace in their faith. Others may struggle with their 

faith or spiritual beliefs. Praying, talking with someone from one’s religious 

community (such as a minister, priest, rabbi, or imam), reading religious 

texts, or listening to religious music may bring comfort.

Family and friends can talk to the dying person about the importance 

of their relationship. For example, adult children can share how their 

father has influenced the course of their lives. Grandchildren can let their 

grandfather know how much he has meant to them. Friends can relate 

how they value years of support and companionship. Family and friends 

who can’t be present could send a recording of what they would like to 

say or a letter to be read out loud.

Sharing memories of good times is another way some people find peace near 

death. This can be comforting for everyone. Some doctors think it is possible 

that even if a patient is unconscious, he or she might still be able to hear. It is 

probably never too late to say how you feel or to talk about fond memories.

Always talk to, not about, the person who is dying. When you come into 

the room, it is a good idea to identify yourself, saying something like, “Hi, 

Juan. It’s Mary, and I’ve come to see you.” Another good idea is to have 

someone write down some of the things said at this time—both by and 

to the person who is dying. In time, these words might serve as a source 

of comfort to family and friends. People who are looking for ways to help 

may welcome the chance to aid the family by writing down what is said.

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PROVIDING COMFORT

There may come a time when a dying person who has been confused 

suddenly seems clear-thinking. Take advantage of these moments, but 

understand that they might be only temporary, not necessarily a sign 

he or she is getting better. Sometimes, a dying person may appear to 

see or talk to someone who is not there. Try to resist the temptation to 

interrupt or say they are imagining things. Give the dying person the 

space to experience their own reality.

Practical Tasks

Many practical jobs need to be done at the end of life—both to relieve 

the person who is dying and to support the caregiver. Everyday tasks can 

be a source of worry for someone who is dying, and they can overwhelm 

a caregiver. Taking over small daily chores around the house—such as 

picking up the mail or newspaper, writing down phone messages, doing a 

load of laundry, feeding the family pet, taking children to soccer practice, 

or picking up medicine from the pharmacy—can provide a much-needed 

break for caregivers.

A person who is dying might be worried about who will take care of 

things when he or she is gone. Offering reassurance—“I’ll make sure 

your African violets are watered,” “Jessica has promised to take care of 

Bandit,” “Dad, we want Mom to live with us from now on”—might 

provide a measure of peace. Reminding the dying person that his or her 

personal affairs are in good hands can also bring comfort.

Everyone may be asking the family, “What can I do for you?” It helps 

to make a specific offer. Say to the family, “Let me help with . . . ” and 

suggest something like bringing meals for the caregivers, paying bills, 

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END OF LIFE: HELPING WITH COMFORT AND CARE

walking the dog, or babysitting. If you’re not sure what to offer, talk to 

someone who has been through a similar situation. Find out what kind 

of help was useful. 

If you want to help but can’t get away from your own home, you could 

schedule other friends or family to help with small jobs or to bring in 

meals. This can allow the immediate family to give their full attention to 

the person who is dying.

If you are the primary caregiver, ask for help when you need it and 

accept help when it’s offered. Don’t hesitate to suggest a specific task to 

someone who offers to help. Friends and family are probably anxious to 

do something for you and/or the person who is dying, but they may be 

reluctant to repeatedly offer when you are so busy.

Keeping close friends and family informed can feel overwhelming. 

Setting up an outgoing voicemail message, a blog, an email list, a private 

Facebook page, or even a phone tree can reduce the number of calls 

you have to make. Some families create a blog or website to share news, 

thoughts, and wishes. See To Learn More about Comfort Care, page 17, 

for organizations that make setting up such webpages easy and secure. 

Or, you can assign a close family member or friend to make the updates 

for you. These can all help reduce the emotional burden of answering 

frequent questions.

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PROVIDING COMFORT

Questions to Ask about Providing Comfort

Family and friends can provide comfort and ease to someone nearing the 

end of life. Here are some questions to help you learn more.

Ask the doctor in charge:

▪ Since there is no cure, what will happen next?

▪ Why are you suggesting this test or treatment?

▪ Will the treatment bring physical comfort?

▪ Will the treatment speed up or slow down the dying process?

▪ What can we expect to happen in the coming days or weeks?

Ask the caregiver:

▪ How are you doing? Do you need someone to talk with?

▪ Would you like to go out for an hour or two? I could stay here

while you are away.

▪ Who has offered to help you? Do you want me to work with them

to coordinate our efforts?

▪ Can I help, maybe . . . walk the dog, answer the phone, go to the drug

store or the grocery store, or watch the children (for example) . . .

for you?

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END OF LIFE: HELPING WITH COMFORT AND CARE

To Learn More about Comfort Care

Some resources to help you learn more about comfort care:

American Academy of Pain Medicine

www.painmed.org | 1-847-375-4731 | info@painmed.org (email)

American Music Therapy Association

www.musictherapy.org | 1-301-589-3300

info@musictherapy.org (email)

CaringBridge 

www.CaringBridge.org

CaringInfo (National Hospice and Palliative Care Organization) 

www.caringinfo.org | 1-800-658-8898 (toll-free)

caringinfo@nhpco.org (email)

Hospice and Palliative Nurses Association

www.hpna.org | 1-412-787-9301 | hpna@hpna.org (email)

National Alliance for Caregiving

www.caregiving.org/resources | 1-301-718-8444

info@caregiving.org (email)

PostHope 

www.posthope.org

What Matters Now

www.whatmattersnow.org

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Death does not sound a trumpet. 

 — African proverb
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Care Options

at the End of Life

Decades ago, most people died at home, but medical advances have 

changed that. Today, most Americans are in hospitals or nursing homes 

at the end of their lives. Some people enter the hospital to get treated for 

an illness. Some may already be living in a nursing home. Increasingly, 

people are choosing hospice care at the end of life. Hospice can be 

provided in any setting—home, nursing home, assisted living facility, 

or inpatient hospital (see Hospice, page 22).

There is no right place to die. And, of course, where we die is not 

always something we get to decide. But, if given the choice, each person 

and/or his or her family should consider which type of care makes the 

most sense, where that kind of care can be provided, whether family and 

friends are available to help, and how they will pay for it. In this section, 

we explain some of the care options available to people at the end of life.

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CARE OPTIONS

Palliative Care

Doctors can provide treatment to seriously ill patients in the hopes of a 

cure for as long as possible. These patients may also receive medical care 

for their symptoms, or palliative care, along with curative treatment.

Who can benefit from palliative care?

Palliative care is a resource for anyone living with a serious 

illness, such as heart failure, chronic obstructive pulmonary 

disease, cancer, dementia, Parkinson’s disease, and many 

others. Palliative care can be helpful at any stage of illness 

and is best provided from the point of diagnosis.

In addition to improving quality of life and helping with 

symptoms, palliative care can help patients understand 

their choices for medical treatment. The organized services 

available through palliative care may be helpful to any older 

person having a lot of general discomfort and disability very 

late in life. Palliative care can be provided along with curative 

treatment and does not depend on prognosis.

A palliative care consultation team is a multidisciplinary team that 

works with the patient, family, and the patient’s other doctors to provide 

medical, social, emotional, and practical support. The team is made of 

palliative care specialist doctors and nurses, and includes others such as 

social workers, nutritionists, and chaplains.

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END OF LIFE: HELPING WITH COMFORT AND CARE

Palliative care can be provided in hospitals, nursing homes, outpatient 

palliative care clinics and certain other specialized clinics, or at home. 

Medicare, Medicaid, and insurance policies may cover palliative care. 

Veterans may be eligible for palliative care through the Department of 

Veterans Affairs. Private health insurance might pay for some services. 

Health insurance providers can answer questions about what they will 

cover. Check to see if insurance will cover your particular situation.

Adriana’s Story

Adriana developed anemia while she was being treated for breast cancer. A 

palliative care specialist suggested she get a blood transfusion to manage the 

anemia and relieve some of the fatigue she was experiencing. Controlling her 

symptoms helped Adriana to continue her curative chemotherapy treatment. 

Treating her anemia is part of palliative care.

In palliative care, you do not have to give up treatment that might cure 

a serious illness. Palliative care can be provided along with curative 

treatment and may begin at the time of diagnosis. Over time, if the 

doctor or the palliative care team believes ongoing treatment is no 

longer helping, there are two possibilities. Palliative care could transition 

to hospice care if the doctor believes the person is likely to die within 

6 months (see What does the hospice 6-month requirement mean?, page 26,

for more about this timeframe). Or, the palliative care team could 

continue to help with increasing emphasis on comfort care.

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CARE OPTIONS

Hospice

Tom’s Story

Tom, who retired from the U.S. Air Force, was diagnosed with lung cancer at 

age 70. As his disease progressed and breathing became more difficult, he wanted 

to explore experimental treatments to slow the disease. Through the palliative 

care provided by the Veterans Health Administration, Tom got treatment for 

his disease and was able to receive the care and emotional support he needed to 

cope with his health problems. The palliative care program also helped arrange 

for assistance around the house and other support for Tom’s wife, making it 

easier for her to care for him at home. When the experimental treatments were 

no longer helping, Tom enrolled in hospice. He died comfortably at home 

3 months later.

At some point, it may not be possible to cure a serious illness, or a patient 

may choose not to undergo certain treatments. Hospice is designed for 

this situation. The patient beginning hospice care understands that his 

or her illness is not responding to medical attempts to cure it or to slow 

the disease’s progress. 

Like palliative care, hospice provides comprehensive comfort care as well 

as support for the family, but, in hospice, attempts to cure the person’s 

illness are stopped. Hospice is provided for a person with a terminal 

illness whose doctor believes he or she has 6 months or less to live if the 

illness runs its natural course.

Hospice is an approach to care, so it is not tied to a specific place. It can 

be offered in two types of settings—at home or in a facility such as a 

nursing home, hospital, or even in a separate hospice center.

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END OF LIFE: HELPING WITH COMFORT AND CARE

Hospice care brings together a team of people with special skills—among 

them nurses, doctors, social workers, spiritual advisors, and trained 

volunteers. Everyone works together with the person who is dying, the 

caregiver, and/or the family to provide the medical, emotional, and 

spiritual support needed.

A member of the hospice team visits regularly, and someone is always 

available by phone—24 hours a day, 7 days a week. Hospice may be 

covered by Medicare and other insurance companies; check to see if 

insurance will cover your particular situation.

Dolores’ Story

Choosing hospice does not have to be a permanent decision. For example, 

Dolores was 82 when she learned that her kidneys were failing. She thought 

that she had lived a long, good life and didn’t want to go through dialysis, so 

Dolores began hospice care. A week later, she learned that her granddaughter 

was pregnant. After talking with her husband, Dolores changed her mind 

about using hospice care and left to begin dialysis, hoping to one day hold her 

first great-grandchild. Shortly after the baby was born, the doctors said Dolores’ 

blood pressure was too low. At that point, she decided to re-enroll in hospice.

It is important to remember that stopping treatment aimed at curing 

an illness does not mean discontinuing all treatment. A good example is 

an older person with cancer. If the doctor determines that the cancer is 

not responding to chemotherapy and the patient chooses to enter into 

hospice care, then the chemotherapy will stop. Other medical care may 

continue as long as it is helpful. For example, if the person has high 

blood pressure, he or she will still get medicine for that.

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COMFORT CARE AT THE END OF LIFE

 

CARE OPTIONS 

Some Differences between Palliative Care and Hospice 

PALLIATIVE CARE HOSPICE 

Who can be 

treated? 

Anyone with a serious 

illness at any stage of 

their disease 

Anyone with a serious 

illness whom doctors 

think has only a short 

time to live, often less 

than 6 months 

Will my symptoms 

be relieved? 

Yes, as much as 

possible 

Yes, as much as 

possible 

Can I continue 

to receive treatments to cure my 

illness? 

Yes, if you wish No, only symptom 

relief will be provided 

Will Medicare 

pay? 

It depends on your 

benefits and 

treatment plan 

Yes, it pays all hospice 

charges 

Does private 

insurance pay? 

It depends on the plan It depends on the plan 

How long will I be 

cared for? 

This depends on what 

care you need and 

your insurance plan 

As long as you meet 

the hospice’s criteria 

of an illness with a life 

expectancy of months, 

not years 

Where will I 

receive this care? 

▪ Home 

▪ Assisted living facility 

▪ Nursing home 

▪ Hospital 

▪ Home 

▪ Assisted living facility 

▪ Nursing home 

▪ Hospice facility 

▪ Hospital 

Copyright © National Hospice and Palliative Care Organization. All rights reserved. 

Reproduction and distribution by an organization or organized group without the 

written permission of the National Hospice and Palliative Care Organization are 

expressly forbidden. 

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END OF LIFE: HELPING WITH COMFORT AND CARE

Although hospice provides a lot of support, the day-to-day care of a 

person dying at home is provided by family and friends. The hospice 

team coaches family members on how to care for the dying person and 

even provides respite care when caregivers need a break. Respite care can 

be for as short as a few hours or for as long as several weeks.

Annie and Maria’s Story

Eighty-year-old Annie had advanced metastatic melanoma and asked for 

help through a hospice program so she could stay in the home she had lived in 

for more than 40 years. After Annie died, hospice continued to support her 

family, offering bereavement counseling for a year. Hospice services greatly 

reduced the stress of caregiving for Annie’s family. This was especially true for 

Annie’s wife, Maria, who weathered the sadness of her loss without her own 

health declining.

Families of people who received care through a hospice program are more 

satisfied with end-of-life care than are those of people who did not have 

hospice services. Also, hospice recipients are more likely to have their 

pain controlled and less likely to undergo tests or be given medicines 

they don’t need, compared with people who don’t use hospice care.

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COMFORT CARE AT THE END OF LIFE CARE OPTIONS

What does the hospice 6-month requirement mean?

Some people misinterpret their doctors’ suggestion to 

consider hospice. They think it means death is very near. 

But, that’s not always the case. Sometimes people don’t 

begin hospice care soon enough to take full advantage of the 

help it offers. Perhaps they wait too long to begin hospice; 

they are too close to death. Or, some people are not eligible 

for hospice care soon enough to receive its full benefit.

In the United States, people enrolled in Medicare can 

receive hospice care if their healthcare provider thinks they 

have less than 6 months to live should the disease take its 

usual course. Doctors have a hard time predicting how long 

an older, sick person will live. Health often declines slowly, 

and some people might need a lot of help with daily living for 

more than 6 months before they die. 

Talk to the doctor if you think a hospice program might be 

helpful. If he or she agrees, but thinks it is too soon for 

Medicare to cover the services, then you can investigate how 

to pay for the services that are needed.

What happens if someone under hospice care lives longer 

than 6 months? If the doctor continues to certify that that 

person is still close to dying, Medicare can continue to pay 

for hospice services. It is also possible to leave hospice care 

for a while and then later return if the healthcare provider 

still believes that the patient has less than 6 months to live.

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END OF LIFE: HELPING WITH COMFORT AND CARE

Hospitals

Omar’s Story

Omar is 64, lives at home, and has a history of congestive heart failure. 

He has decided that no matter what, he wants the doctor to do everything 

medically possible to extend his life. Those closest to Omar agree. One 

night, Omar wakes up with chest pain and is taken to the hospital, where 

doctors and nurses are available around-the-clock. Hospitals offer a full 

range of treatment choices, tests, and other medical care. If Omar’s heart 

continues to fail, he can receive care in the intensive care unit (ICU) or 

coronary care unit (CCU).

Although hospitals have rules, they can sometimes be flexible. If Omar’s 

doctor thinks he is not responding to treatment and is dying, the family 

can ask for relaxed visiting hours. If Omar’s family wants to bring personal 

items from home, they can ask the staff if there are space limitations or if 

disinfection is needed.

In a hospital setting, medical professionals are available who know what 

needs to be done for someone who is dying. This can be very reassuring. 

In addition to the regular care team, some hospitals may have palliative 

care teams (see Palliative Care, page 20) that can assist with managing 

uncomfortable symptoms and making medical decisions for patients 

who may or may not be at the end of life.

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COMFORT CARE AT THE END OF LIFE CARE OPTIONS

The doctor wants to move my relative to the ICU. What 

can we expect?

The ICU (intensive care unit) and CCU (coronary care unit) 

are types of critical care units. These units are parts of 

a hospital where seriously ill patients can benefit from 

specially trained staff who have quick access to advanced 

equipment. The medical staff in ICUs and CCUs closely 

monitor and care for a small number of patients. Doctors 

who work in these units are called intensivists.

Patients in the ICU or CCU are often connected to monitors 

that check breathing, heart rate, pulse, blood pressure, 

and oxygen levels. An IV (intravenous) tube may supply 

medicines, fluids, and/or nutrition. Another tube called a 

Foley catheter may take urine out of the body. A tube through 

the nose or stomach area may provide nutrition and remove 

unwanted fluids. A breathing tube may be attached to a 

ventilator or respirator to help with breathing.

Often, these external supports—designed to be used for a 

short time—will maintain vital functions while the body heals. 

But sometimes, even with intensive care, the body can’t 

heal, and organs start to fail. When this happens, survival 

is unlikely. In this case, the healthcare team might talk to 

the family—and the patient if he or she is conscious—about 

considering whether or not to continue intensive treatment.

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END OF LIFE: HELPING WITH COMFORT AND CARE

Nursing Homes

More and more people are in nursing homes at the end of life. In a nursing 

home, nursing staff are always present. Unlike a hospital, a doctor is not 

in the facility all the time, but may be available by phone. Plans for endof-life care can be arranged ahead of time, so when the time comes, care 

can be provided as needed without first consulting a doctor.

If the person has lived in the nursing home for a while, the staff and family 

probably already have a relationship. This can make the care feel more 

personalized than in a hospital. Additionally, if the person is enrolled 

in hospice (see Hospice, page 22), the hospice team will be available to 

assist nursing facility staff with end-of-life care.

As in a hospital, privacy may be an issue in nursing homes. You can 

ask if arrangements can be made to give your family more time alone 

when needed.

Home

Home is likely the most familiar setting for someone who needs endof-life care. Family and friends can come and go freely. Care at home 

can be a big job for family and friends—physically, emotionally, and 

financially. But, there are benefits too, and it is often a job caregivers are 

willing to take on. Hiring a home nurse is an option for people who need 

additional help and have the financial resources. 

Talk with your healthcare provider about the kind of care needed. 

Frequently, this care does not require a nurse but can be provided by 

nursing assistants or family and friends without medical training.

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COMFORT CARE AT THE END OF LIFE CARE OPTIONS

Who pays for care at the end of life?

How to pay for care at the end of life depends on the type and 

place of care and the kind of insurance. Medicare, Medicaid, 

private medical insurance, long-term care insurance, Veterans

Health Administration (if VA-eligible), or the patient and his 

or her family are common sources of payment.

See To Learn More about Care Options at the End of Life, page 32,

for links and telephone numbers for Federal Government 

services and programs.

To make comfort care available at home, you will have to arrange for 

services (such as visiting nurses) and special equipment (like a hospital 

bed or bedside commode). Health insurance might only cover these 

services or equipment if they have been ordered by a doctor; make sure 

you check with your insurance company before ordering. 

Work with the doctor to decide what is needed to support comfort care 

at home. If the seriously ill person is returning home from the hospital, 

sometimes a hospital discharge planner, often a social worker, can help 

with the planning. Your local Area Agency on Aging might be able to 

recommend other sources of help. See To Learn More about Care Options 

at the End of Life, page 32, to find out how to contact your Area Agency 

on Aging.

A doctor has to be available to oversee the patient’s care at home—he or 

she will arrange for new services, adjust treatment, and order medicines 

as needed. It is important to follow the doctor’s plan in order to make 

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END OF LIFE: HELPING WITH COMFORT AND CARE

the dying person as comfortable as possible. Talk with the doctor if you 

think a treatment is no longer helping. Hospice is frequently used to care 

for people who are home at the end of life.

Questions to Ask about End-of-Life Decisions

Choosing among the different options for care at the end of life can be 

difficult. Here are some questions that might help you determine what is 

best for you and your family.

▪ If we continue the current course of treatment, what do you expect 

will happen next?

▪ What kind of end-of-life care is needed?

▪ Is the most likely caregiver able to give that kind of care?

▪ Where would the person who is dying want to have this end-of-life 

care—a facility or at home, for example?

▪ What is the best place to get the type of care he or she wants?

▪ Who will pay for this care?

▪ Can we get help paying for respite care?

▪ Is there a good chance that treatment in an intensive care unit will 

reverse the dying process, or instead draw it out?

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CARE OPTIONS

To Learn More about Care Options at the End of Life

Some resources to help you learn more about care options at the end

of life:

Center to Advance Palliative Care

www.getpalliativecare.org | 1-212-201-2670 | capc@mssm.edu (email)

Centers for Medicare & Medicaid Services

www.medicare.gov/Pubs/pdf/02154.pdf | 1-800-633-4227 (toll-free)

Department of Veterans Affairs

www.va.gov | 1-877-222-8387 (toll-free)

 Hospice Foundation of America 

www.hospicefoundation.org/End-of-Life-Support-and-Resources

1-800-854-3402 (toll-free) | info@hospicefoundation.org (email)

CaringInfo (National Hospice and Palliative Care Organization) 

www.caringinfo.org | 1-800-658-8898 (toll-free)

caringinfo@nhpco.org (email)

Visiting Nurse Associations of America 

www.vnaa.org | 1-888-866-8773 (toll-free) | vnaa@vnaa.org (email)

To Contact Your Area Agency on Aging:

Eldercare Locator 

www.eldercare.gov | 1-800-677-1116 (toll-free)

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END OF LIFE: HELPING WITH COMFORT AND CARE

While I thought that I was learning how to live, 

 I have been learning how to die.

 — Leonardo da Vinci (1452-1519)
Dementia

at the End of Life

As they reach the end of life, people suffering from dementia can present 

special challenges for caregivers. People can live with diseases such as 

Alzheimer’s or Parkinson’s dementia for years, so it can be hard to think 

of these as terminal diseases. But, they do cause death.

Hard Decisions

Dementia causes the gradual loss of thinking, remembering, and 

reasoning abilities, making it difficult for those who want to provide 

supportive care at the end of life to know what is needed. Because people 

with advanced dementia can no longer communicate clearly, they cannot 

share their concerns. Is Uncle Bert refusing food because he’s not hungry 

or because he’s confused? Why does Grandma Sakura seem agitated? Is 

she in pain and needs medication to relieve it, but can’t tell you?

As these conditions progress, caregivers may find it hard to provide emotional 

or spiritual comfort. How can you let Grandpa know how much his life has 

meant to you? How do you make peace with your mother if she no longer 

knows who you are? Someone who has severe memory loss might not take 

spiritual comfort from sharing family memories or understand when others 

express what an important part of their life this person has been. Palliative 

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END OF LIFE: HELPING WITH COMFORT AND CARE

care or hospice (see Care Options at the End of Life, starting on page 19)

can be helpful in many ways to families of people with dementia.

Sensory connections—targeting someone’s senses, like hearing, touch, or 

sight—can bring comfort. Being touched or massaged can be soothing. 

Listening to music, white noise, or sounds from nature seem to relax 

some people and lessen their agitation.

When a dementia like Alzheimer’s disease is first diagnosed, if everyone 

understands that there is no cure, then plans for the end of life can be 

made before thinking and speaking abilities fail and the person with 

Alzheimer’s can no longer legally complete documents like advance 

directives (see Prepare Advance Directives and Other Documents, page 63).

End-of-life care decisions are more complicated for caregivers if the 

dying person has not expressed the kind of care he or she would prefer. 

Someone newly diagnosed with Alzheimer’s disease might not be able to 

imagine the later stages of the disease.

Alma and Silvia’s Story

Alma had been forgetful for years, but even after her family knew that 

Alzheimer’s disease was the cause of her forgetfulness, they never talked about 

what the future would bring. As time passed and the disease eroded Alma’s 

memory and ability to think and speak, she became less and less able to share 

her concerns and wishes with those close to her. 

This made it hard for her daughter Silvia to know what Alma needed or 

wanted. When the doctors asked about feeding tubes or antibiotics to treat 

pneumonia, Silvia didn’t know how to best reflect her mother’s wishes. Her 

decisions had to be based on what she knew about her mom’s values, rather 

than on what Alma actually said she wanted.

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DEMENTIA

Weighing Care Choices 

Quality of life is an important issue when making healthcare decisions 

for people with dementia. For example, medicines are available that 

may delay or keep symptoms from becoming worse for a little while. 

Medicines also may help control some behavioral symptoms in people 

with mild to moderate Alzheimer’s disease. 

However, some caregivers might not want drugs prescribed for people 

in the later stages of Alzheimer’s. They may believe that the person’s 

quality of life is already so poor that the medicine is unlikely to make 

a difference. If the drug has serious side effects, they may be even more 

likely to decide against it.

When making care decisions for someone else near the end of life, 

consider the goals of care and weigh the benefits, risks, and side effects 

of the treatment. You may have to make a treatment decision based on 

the person’s comfort at one end of the spectrum and extending life or 

maintaining abilities for a little longer at the other.

With dementia, a person’s body may continue to be physically healthy 

while his or her thinking and memory are deteriorating. This means that 

caregivers and family members may be faced with very difficult decisions 

about how treatments that maintain physical health, such as installing a 

pacemaker, fit within the care goals.

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END OF LIFE: HELPING WITH COMFORT AND CARE

Dementia’s Unpredictable Progression

Dementia often progresses slowly and unpredictably. Experts suggest 

that signs of the final stage of Alzheimer’s disease include some of the 

following:

▪ Being unable to move around on one’s own

▪ Being unable to speak or make oneself understood

▪ Needing help with most, if not all, daily activities, such as eating 

and self-care

▪ Eating problems such as difficulty swallowing

Because of their unique experience with what happens at the end of life, 

hospice and palliative care experts might be able to help identify when 

someone in the final stage of Alzheimer’s disease is in the last days or 

weeks of life (see Care Options at the End of Life, starting on page 19).

Caregiver Support

Caring for people with Alzheimer’s or other dementias at home can be 

demanding and stressful for the family caregiver. Depression is a problem 

for some family caregivers, as is fatigue, because many feel they are always 

on call. Family caregivers may have to cut back on work hours or leave 

work altogether because of their caregiving responsibilities. 

Many family members taking care of a person with advanced dementia at 

home feel relief when death happens—for themselves and for the person 

who died. It is important to realize such feelings are normal. Hospice—

whether used at home or in a facility (such as a nursing home)—gives 

family caregivers needed support near the end of life, as well as help with 

their grief, both before and after their family member dies.

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DEMENTIA

Questions to Ask about Dementia Care

You will want to understand how the available medical options presented 

by the healthcare team fit into your family’s particular needs. You might 

want to ask questions such as:

▪ How will the approach the doctor is suggesting affect your relative’s 

quality of life? Will it make a difference in comfort and well-being?

▪ If considering home hospice for your relative with dementia, what 

will be needed to care for him or her? Does the facility have special 

experience with people with dementia?

▪ What can I expect as the disease gets worse?

To Learn More about Dementia and End-of-Life Care 

Some resources to help you learn more about dementia and end-of-life care:

Alzheimer’s Disease Education and Referral Center 

www.nia.nih.gov/alzheimers | 1-800-438-4380 (toll-free)

1-800-222-4225 (TTY/toll-free) | adear@nia.nih.gov (email)

Alzheimer’s Association

www.alz.org | 1-800-272-3900 (toll-free)

1-866-403-3073 (TTY/toll-free) | info@alz.org (email)

Alzheimer’s Foundation of America 

www.alzfdn.org | 1-866-232-8484 (toll-free)

info@alzfdn.org (email)

U.S. Department of Health and Human Services

www.alzheimers.gov

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Understanding

Healthcare Decisions

It can be overwhelming to be asked to make healthcare decisions for 

someone who is dying and is no longer able to make his or her own 

decisions. It is even more difficult if you do not have written or verbal 

guidance (see Prepare Advance Directives and Other Documents, page 63). 

How do you decide what type of care is right for someone? Even when 

you have written documents, some decisions still might not be clear since 

the documents may not address every situation you could face.

Two approaches might be useful. One is to put yourself in the place of 

the person who is dying and try to choose as he or she would. This is 

called substituted judgment. Some experts believe that decisions should 

be based on substituted judgment whenever possible.

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Joseph and Leilani’s Story

Joseph’s 90-year-old mother, Leilani, was in a coma after having a major stroke. 

The doctor said damage to Leilani’s brain was widespread and she needed to be 

put on a breathing machine (ventilator) or she would probably die. The doctor 

asked Joseph if he wanted that to be done. Joseph remembered how his mother 

disapproved when an elderly neighbor was put on a similar machine after a 

stroke. He decided to say no, and his mother died peacefully a few hours later.
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HEALTHCARE DECISIONS

Another approach, known as best interests, is to decide what would be best for 

the dying person. This is sometimes combined with substituted judgment.

Ali and Wadi’s Story

Ali’s father, Wadi, is 80 and has lung cancer, as well as advanced Parkinson’s 

disease. He is in a nursing facility and doesn’t seem to recognize Ali when he 

visits. Wadi’s doctor suggested that surgery to remove part of a lung might slow 

down the course of the cancer and give Wadi more time. But, Ali thought, 

“What kind of time? What would that time do for Dad?” Ali decided that 

putting his dad through surgery and recovery was not in Wadi’s best interests. 

After talking with Wadi’s doctors, Ali believed that surgery would not improve 

his father’s quality of life but would cause him pain and discomfort.

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 dying person ever talked about what he or she would want 

at the end of life?

▪ Has he or she expressed an opinion about how someone else was 

being treated?

▪ What were his or her values in life? What gave meaning to life? Maybe 

it was being close to family—watching them grow and making memories together. Perhaps just being alive was the most important thing.

As a decision-maker without specific guidance from the dying person, 

you need as much information as possible on which to base your actions. 

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END OF LIFE: HELPING WITH COMFORT AND CARE

You might ask the doctor:

▪ What might we expect to happen in the next few hours, days, or 

weeks if we continue our current course of treatment?

▪ Why is this new test being suggested?

▪ Will it change the current treatment plan?

▪ Will a new treatment help my relative get better?

▪ How would the new treatment change his or her quality of life?

▪ Will it give more quality time with family and friends?

▪ How long will this treatment take to make a difference?

▪ If we choose to try this treatment, can we stop it at any time? For 

any reason?

▪ What are the side effects of the approach you are suggesting?

▪ If we try this new treatment and it doesn’t work, what then?

▪ If we don’t try this treatment, what will happen?

▪ Is the improvement we saw today an overall positive sign or just 

something temporary?

It is a good idea to have someone with you when discussing these issues 

with medical staff. Having someone take notes or remember details can 

be very helpful. If you are unclear about something you are told, don’t 

be afraid to ask the doctor or nurse to repeat it or to say it another way 

that does make sense to you. Keep asking questions until you have all 

the information you need to make decisions. Make sure you know how 

to contact a member of the medical team if you have a question or if the 

dying person needs something.

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HEALTHCARE DECISIONS

Sometimes, the whole family wants to be involved in every decision. 

Maybe that is the family’s cultural tradition. Or, maybe the person dying 

did not pick one person to make healthcare choices before becoming 

unable to do so. That is not unusual, but it makes sense to choose one 

person to be the contact when dealing with medical staff. The doctors 

and nurses will appreciate having to phone only one person.

Even if one family member is named as the decision-maker, it is a good 

idea, as much as possible, to have family agreement about the care plan. If 

you can’t agree on a care plan, a decision-maker, or even a spokesperson, 

the family might consider a mediator, someone trained to bring people 

with different opinions to a common decision (see To Learn More about 

Making Healthcare Decisions, page 49). 

In any case, as soon as it is clear that the patient is nearing the end of life, 

the family should try to discuss with the medical team which end-of-life 

care approach they want for their family member. That way, decision 

making for crucial situations can be planned and may feel less rushed.

Issues You May Face

Maybe you are now faced with making end-of-life choices for someone 

close to you. You’ve thought about that person’s values and opinions, and 

you’ve asked the healthcare team to explain the treatment plan and what 

you can expect to happen. 

But, there are other issues that are important to understand in case they 

arise. What if the dying person starts to have trouble breathing and a 

doctor says a ventilator might be needed? Maybe one family member 

wants the healthcare team to do everything possible to keep this relative 

alive. What does that involve? Or, what if family members can’t agree on 

end-of-life care or they disagree with the doctor? What happens then?

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END OF LIFE: HELPING WITH COMFORT AND CARE

Here are some other common end-of-life issues. They will give you a general 

understanding and may help your conversations with the doctors.

If we say do everything possible, what does that mean? This means that 

if someone is dying, all measures that might keep vital organs working will 

be tried—for example, using a ventilator to support breathing or starting 

dialysis for failing kidneys. Such life support can sometimes be a temporary 

measure that allows the body to heal itself and begin to work normally again. 

It is not intended to be used indefinitely in someone who is dying.

What can be done if someone’s heart stops beating (cardiac arrest)?

CPR (cardiopulmonary resuscitation) can sometimes restart a stopped 

heart. It is most effective in people who were generally healthy before 

their heart stopped. During CPR, the doctor repeatedly pushes on the 

chest with great force and periodically puts air into the lungs. Electric 

shocks (called defibrillation) may also be used to correct an abnormal 

heart rhythm, and some medicines might also be given. Although not 

usually shown on television, the force required for CPR can cause broken 

ribs or a collapsed lung. Often, CPR does not succeed in older adults 

who have multiple chronic illnesses or who are already frail.

What if someone needs help breathing or completely stops breathing 

(respiratory arrest)? If a patient has very severe breathing problems or has 

stopped breathing, a ventilator may be needed. A ventilator forces the lungs to 

work. Initially, this involves intubation, putting a tube attached to a ventilator 

down the throat into the trachea or windpipe. Because this tube can be 

quite uncomfortable, people are often sedated with very strong intravenous 

medicines. Restraints may be used to prevent them from pulling out the tube.

If the person needs ventilator support for more than a few days, the doctor 

might suggest a tracheotomy, sometimes called a “trach” (rhymes with “make”). 

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COMFORT CARE AT THE END OF LIFE HEALTHCARE DECISIONS

This tube is then attached to the ventilator. This is more comfortable than a 

tube down the throat and may not require sedation. Inserting the tube into 

the trachea is a bedside surgery. A tracheotomy can carry risks, including a 

collapsed lung, a plugged tracheotomy tube, or bleeding.

How can I be sure the medical staff knows that we don’t want efforts 

to restore a heartbeat or breathing? Tell the doctor in charge as soon 

as the patient or person making healthcare decisions decides that CPR 

or other life-support procedures should not be performed. The doctor 

will then write this on the patient’s chart using terms such as DNR (Do 

Not Resuscitate), DNAR (Do Not Attempt to Resuscitate), AND (Allow 

Natural Death), or DNI (Do Not Intubate). DNR forms vary by State and 

are usually available online.

If end-of-life care is given at home, a special non-hospital DNR, signed by a 

doctor, is needed. This ensures that if emergency medical technicians (EMTs) 

are called to the house, they will respect your wishes. Make sure it is kept in a 

prominent place so EMTs can see it. Without a non-hospital DNR, in many 

States EMTs are required to perform CPR and similar techniques. Hospice 

staff can help determine whether a medical condition is part of the normal 

dying process or something that needs the attention of EMTs.

DNR orders do not stop all treatment. They only mean that CPR and a 

ventilator will not be used. These orders are not permanent—they can be 

changed if the situation changes.

What about pacemakers (or similar devices)—should they be 

turned off? A pacemaker is a device implanted under the skin on the 

chest that keeps a heartbeat regular. It will not keep a dying person 

alive. Some people have an implantable cardioverter defibrillator (ICD) 

under the skin. An ICD shocks the heart back into regular rhythm when 

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END OF LIFE: HELPING WITH COMFORT AND CARE

needed. The ICD should be turned off at the point when life support is 

no longer wanted. This can be done at the bedside without surgery.

What if the doctor suggests a feeding tube? If a patient can’t or won’t 

eat or drink, the doctor might suggest a feeding tube. While a patient 

recovers from an illness, getting nutrition temporarily through a feeding 

tube can be helpful. But, at the end of life, a feeding tube might cause 

more discomfort than not eating. For people with dementia, tube feeding 

does not prolong life or prevent aspiration. 

As death approaches, loss of appetite is common. Body systems start 

shutting down, and fluids and food are not needed as before. Some 

experts believe that at this point few nutrients are absorbed from any type 

of nutrition, including those received through a feeding tube. Further, 

after a feeding tube is inserted, the family might need to make a difficult 

decision about when, or if, to remove it.

If tube feeding will be tried, there are two methods that could be used. In 

the first, a feeding tube, known as a nasogastric or NG tube, is threaded 

through the nose down to the stomach to give nutrition for a short time. 

Sometimes, the tube is uncomfortable. Someone with an NG tube might 

try to remove it. This usually means the person has to be restrained, 

which could mean binding his or her hands to the bed. 

If tube feeding is required for an extended time, then a gastric or G tube is put 

directly into the stomach through an opening made in the side or abdomen. 

This second method is sometimes called a PEG (percutaneous endoscopic 

gastrostomy) tube. It carries risks of infection, pneumonia, and nausea.

Hand feeding (sometimes called assisted oral feeding) is an alternative to tube 

feeding. This approach may have fewer risks, especially for people with dementia.

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COMFORT CARE AT THE END OF LIFE HEALTHCARE DECISIONS

Should someone who is dying be sedated? Sometimes, for patients 

very near the end of life, the doctor might suggest sedation to manage 

symptoms that are not responding to other treatments and are still making 

the patient uncomfortable. This means using medicines to put the patient 

in a sleep-like state. Many doctors suggest continuing to use comfort care 

measures like pain medicine even if the dying person is sedated. Sedatives 

can be stopped at any time. A person who is sedated may still be able to 

hear what you are saying—so try to keep speaking directly to, not about, 

him or her. Do not say things you would not want the patient to hear.

What about antibiotics? Antibiotics are medicines that fight infections 

caused by bacteria. Lower respiratory infections (such as pneumonia) 

and urinary tract infections are often caused by bacteria and are common 

in older people who are dying. Many antibiotics have side effects, so the 

value of trying to treat an infection in a dying person should be weighed 

against any unpleasant side effects. If someone is already dying when the 

infection began, giving antibiotics is probably not going to prevent death 

but might make the person feel more comfortable.

Diego’s Story

Diego was 83 and had lived in a nursing home for several years with advanced 

Parkinson’s disease. One day, he choked on some food, causing him to inhale a 

small amount into his lungs. As a result, Diego developed aspiration pneumonia. 

The doctors assured his wife that they could keep Diego comfortable without 

antibiotics, but she wanted them to try treating his pneumonia. He died a few 

days later despite their efforts.

Is refusing treatment legal? Choosing to stop treatment that is not 

curing or controlling an illness, or deciding not to start a new treatment, 

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END OF LIFE: HELPING WITH COMFORT AND CARE

is completely legal—whether the choice is made by the person who is dying 

or by the person making healthcare decisions. Some people think this is like 

allowing death to happen. The law does not consider refusing such treatment 

to be either suicide or euthanasia, sometimes called mercy killing.

What happens if the doctor and I have different opinions about care 

for someone who is dying? Sometimes medical staff, the patient, and 

family members disagree about a medical care decision. This can be 

especially problematic when the dying person can’t tell the doctors what 

kind of end-of-life care he or she wants. For example, the family might 

want more active treatment, like chemotherapy, than the doctors think 

will be helpful. If there is an advance directive explaining the patient’s 

preferences, those guidelines should determine care (see Prepare Advance 

Directives and Other Documents, page 63).

Without the guidance of an advance directive, if there is a disagreement 

about medical care, it may be necessary to get a second opinion from a 

different doctor or to consult the ethics committee or patient representative, 

also known as an ombudsman, of the hospital or facility. Palliative care 

consultation may also be helpful. An arbitrator (mediator) can sometimes 

assist people with different views to agree on a plan (see To Learn More 

about Making Healthcare Decisions, page 49).

The doctor does not seem familiar with our family’s views about 

dying. What should we do? America is a rich melting pot of religions, 

races, and cultures. Ingrained in each tradition are expectations about 

what should happen as a life nears its end. It is important for everyone 

involved in a patient’s care to understand how each family background 

may influence expectations, needs, and choices. 

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COMFORT CARE AT THE END OF LIFE HEALTHCARE DECISIONS

Your background may be different from that of the doctor with whom you

are working. Or, you might be used to a different approach to making 

healthcare decisions at the end of life than your medical team. For 

example, many healthcare providers look to a single person—the dying 

person or his or her chosen representative—for important healthcare 

decisions at the end of life. But, in some cultures, the entire immediate 

family takes on that role.

It is helpful to discuss your personal and family traditions with your doctors 

and nurses. If there are religious or cultural customs surrounding death that are 

important to you, make sure to tell your healthcare providers.

Knowing that these practices will be honored could comfort the dying 

person. Telling the medical staff ahead of time may also help avoid 

confusion and misunderstanding when death occurs. Make sure you 

understand how the available medical options presented by the healthcare 

team fit into your family’s desires for end-of-life care.

Questions to Ask about Healthcare Decisions

Here are some questions you might want to ask the medical staff:

▪ What is the care plan? What are the benefits and risks?

▪ How often should we reassess the care plan?

▪ If we try using the ventilator to help with breathing and decide to 

stop, how will that be done?

▪ If my family member is dying, why does he or she have to be connected 

to all those tubes and machines? Why do we need more tests?

▪ What is the best way for our family to work with the care staff?

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END OF LIFE: HELPING WITH COMFORT AND CARE

▪ How can I make sure I get a daily update on my family member’s 

condition?

▪ Will you call me if there is a change in his or her condition?

Thoughts to Share

Make sure the healthcare team knows what is important to your family 

surrounding the end of life. You might say:

▪ In my religion, we . . . (then describe your religious traditions 

regarding death).

▪ Where we come from . . . (tell what customs are important to you 

at the time of death).

▪ In our family when someone is dying, we prefer . . . (describe what 

you hope to have happen).

To Learn More about Making Healthcare Decisions

Some resources to help you learn more about making healthcare decisions:

Association for Conflict Resolution

www.acrnet.org | 1-202-780-5999 | admin@acrnet.org (email)

Family Caregiver Alliance

www.caregiver.org | 1-800-445-8106 (toll-free)

info@caregiver.org (email)

Society of Critical Care Medicine

www.myicucare.org | 1-847-827-6869 | info@sccm.org (email)

4 9
We understand death for the first time when 

 he puts his hand upon one whom we love. 

 — Madame deStael (1766-1817) 
END OF LIFE: HELPING WITH COMFORT AND CARE

What Happens

When Someone Dies

When death comes suddenly, there is little time to prepare. In contrast, 

watching an older person become increasingly frail may mean that it’s 

hard to know when the end of life begins because changes can happen so 

slowly. But, if you do know death is approaching and understand what 

will happen, then you do have a chance to plan. 

Listen carefully to what doctors and nurses are saying. They may be 

suggesting that death could be soon. You might also ask—how much 

time do you think my loved one has left, based on your experience with 

other patients in this condition?

Just as each life is unique, so is each death. But, there are some common 

experiences very near the end:

▪ Shortness of breath, known as dyspnea

▪ Depression

▪ Anxiety

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WHEN SOMEONE DIES

▪ Tiredness and sleepiness

▪ Mental confusion or reduced alertness

▪ Refusal to eat or drink

Each of these symptoms, taken alone, is not a sign of death. But, for 

someone with a serious illness or declining health, these might suggest 

that the person is nearing the end of life.

In addition, when a person is closer to death, the hands, arms, feet, or legs 

may be cool to the touch. Some parts of the body may become darker or 

blue-colored. Breathing and heart rates may slow. In fact, there may be 

times when the person’s breathing becomes abnormal, known as CheyneStokes breathing. Some people hear a death rattle, noisy breathing that 

makes a gurgling or rattling sound. The chest stops moving, no air comes 

out of the nose, and there is no pulse. Eyes that are open can seem glassy.

Should there always be someone in the room with a 

dying person?

Staying close to someone who is dying is often called keeping 

a vigil. It can be comforting for the caregiver to always be 

there, but it can also be tiring and stressful. Unless your 

cultural or religious traditions require it, do not feel that you 

must stay with the person all the time. If there are other 

family members or friends around, try taking turns sitting in 

the room. Some people almost seem to prefer to die alone. 

They appear to slip away just after visitors leave.

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END OF LIFE: HELPING WITH COMFORT AND CARE END OF LIFE: HELPING WITH COMFORT AND CARE

After death, there may still be a few shudders or movements of the arms 

or legs. There could even be an uncontrolled cry because of muscle 

movement in the voice box. Sometimes there will be a release of urine or 

stool, but usually only a small amount since so little has probably been 

eaten in the last days of life.

Call 911 or not?

When there is a medical emergency, such as a heart attack, 

stroke, or serious accident, we know to call 911. But, if a person 

is dying at home and does not want CPR (cardiopulmonary 

resuscitation), calling 911 is not necessary. In fact, a call to 911

could cause confusion. Many places require EMTs (emergency

medical technicians) who respond to 911 calls to perform CPR

if someone’s heart has stopped. 

Consider having a non-hospital DNR (Do Not Resuscitate 

order) if the person is dying at home. Ask your doctor or the 

hospice care team who you should call at the time of death.

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Things to Do

After Someone Dies

Nothing has to be done immediately after a person’s death. Take the time 

you need. Some people want to stay in the room with the body; others 

prefer to leave. You might want to have someone make sure the body is 

lying flat before the joints become stiff and cannot be moved. This rigor 

mortis begins sometime during the first hours after death.

After the death, how long you can stay with the body may depend on 

where death happens. If it happens at home, there is no need to move 

the body right away. This is the time for any special religious, ethnic, or 

cultural customs that are performed soon after death.

If the death seems likely to happen in a facility, such as a hospital or 

nursing home, discuss any important customs or rituals with the staff 

early on, if possible. That will allow them to plan so you can have the 

appropriate time with the body.

Some families want time to sit quietly with the body, console each other, and 

maybe share memories. You could ask a member of your religious community 

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END OF LIFE: HELPING WITH COMFORT AND CARE END OF LIFE: HELPING WITH COMFORT AND CARE

or a spiritual counselor to come. If you have a list of people to notify, this is the 

time to call those who might want to come and see the body before it is moved.

As soon as possible, the death must be officially pronounced by someone 

in authority like a doctor in a hospital or nursing facility or a hospice 

nurse. This person also fills out the 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. 

If hospice is helping, a plan for what happens after death is already in 

place. If death happens at home without hospice, try to talk with the 

doctor, local medical examiner (coroner), your local health department, 

or a funeral home representative in advance 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. Usually this is done by a funeral home. 

The hospital or nursing facility, if that is where the death took place, may 

call the funeral home for you. If at home, you will need to contact the 

funeral home directly or ask a friend or family member to do that for you.

The doctor may ask if you want an autopsy. This is a medical procedure 

conducted by a specially trained physician to learn more about what 

caused the death. For example, if the person who died was believed to have 

Alzheimer’s disease, a brain autopsy will allow for a definitive diagnosis. 

If your religion or culture objects to autopsies, talk to the doctor. Some 

people planning a funeral with a viewing worry about having an autopsy, 

but the physical signs of an autopsy are usually hidden by clothing.

5 5
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THINGS TO DO

What about organ donation?

At some time before death or right after it, the doctor may ask 

about donating organs such as the heart, lungs, pancreas, 

kidneys, cornea, liver, and skin. Organ donation allows healthy 

organs from someone who died to be transplanted into living 

people who need them. People of any age can be organ donors.

The person who is dying may have already said that he or 

she would like to be an organ donor. Some States list this 

information on the driver’s license. If not, the decision has 

to be made quickly. There is no cost to the donor’s family 

for this gift of life. If the person has requested a Do Not 

Resuscitate (DNR) order but wants to donate organs, he 

or she might have to indicate that the desire to donate 

supersedes the DNR. That is because it might be necessary 

to use machines to keep the heart beating until the medical 

staff is ready to remove the donated organs. 

For more information, read NIA’s Organ Donation and 

Transplantation for Older Donors and Recipients (online-only 

at www.nia.nih.gov/health/publication/organ-donationand-transplantation).

5 6
END OF LIFE: HELPING WITH COMFORT AND CARE

To Learn More about What to Do When Someone Dies

Some resources to help you learn more about what to do when someone dies:

AARP

www.aarp.org/home-family/caregiving/grief-and-loss

1-888-687-2277 (toll-free) | 1-877-342-2277 (español/ línea gratis)

1-877-434-7598 (TTY/toll-free) | member@aarp.org (email)

Donate Life America

www.donatelife.net | 1-804-377-3580

donatelifeamerica@donatelife.net (email)

Federal Trade Commission

www.ftc.gov/bcp/edu/pubs/consumer/products/pro19.shtm

1-877-382-4357 (toll-free)

The Living Bank

www.livingbank.org | 1-800-528-2971 (toll-free)

info@livingbank.org (email)

Social Security Administration

www.socialsecurity.gov | 1-800-772-1213 (toll-free)

1-800-325-0778 (TTY/toll-free)

5 7
Getting Help

for Your Grief

Losing someone close to you may leave you feeling sad, lost, alone, or even 

angry. You may miss the person who has died—you want him or her back. 

You might have also been so busy with caregiving that it now seems you 

have nothing to do. This can add to your feelings of loss. This is all part of 

mourning, a normal reaction to the loss of someone you’ve cared for.

There are many ways to grieve and to learn to accept loss. Try not to 

ignore your grief. Support may be available until you can manage your 

grief on your own. It is especially important to get help with your loss if 

you feel overwhelmed or very depressed by it.

Family and compassionate friends can be a great support. They are 

grieving, too, and some people find that sharing memories is one way 

to help each other. Feel free to share stories about the one who is gone. 

Sometimes people hesitate to bring up the loss or mention the dead 

person’s name because they worry this can be hurtful. But, people may 

find it helpful to talk directly about their loss. You are all coping with the 

death of someone you cared for.

5 8
END OF LIFE: HELPING WITH COMFORT AND CARE

Charlie and Doug’s Story

Shortly after Charlie’s husband Doug died, his friends started coming over with 

dinners and memories to share. They would sit around Charlie’s dining table 

for hours remembering Doug’s humor and kindness. Soon, Doug’s friends were 

joining them with their own recollections. It was so like old times that it almost 

seemed Doug had just stepped out of the room. Those evenings together helped 

Charlie, as well as the others, start to heal after their loss.

Grief Counseling

Sometimes people find grief counseling makes it easier to work through their 

sorrow. Grief counselors can talk with you one-on-one. Regular talk therapy 

can help people learn to accept a death and, in time, start a new life. 

There are also support groups where grieving people help each other. 

These groups can be specialized—parents who have lost children or 

people who have lost spouses, for example—or they can be for anyone 

learning to manage grief. Check with religious groups, a local hospital, 

hospice groups, or your doctor to find support groups in your area.

An essential part of hospice is providing grief counseling to the family 

of someone who was under their care. You can ask hospice workers for 

bereavement support at this time, even if hospice was not used before the 

death. Nursing homes and hospitals often have social workers who have 

helpful resources. The funeral home might also be able to suggest where 

you can find counseling.

Remember to take good care of yourself. You might know that grief 

affects how you feel emotionally, but you may not realize that it can 

also have physical effects. The stress of the death and your grief could 

5 9
GETTING HELP

even make you sick. Eat well, exercise, get enough sleep, and get back 

to doing things you used to enjoy, like going to the movies, walking, or 

reading. Accept offers of help or companionship from friends and family. 

It’s good for you and for them.

Let major decisions wait, if possible.

Try to delay major life decisions until you are feeling better. 

You don’t want to decide to make a big change like selling 

your home or leaving your job when you are grieving and 

perhaps not thinking clearly.

To Learn More about Dealing with Grief

Some resources to help you learn more about dealing with grief:

AARP

www.aarp.org/home-family/caregiving/grief-and-loss

1-888-687-2277 (toll-free) | 1-877-342-2277 (español/línea gratis)

1-877-434-7598 (TTY/toll-free) | member@aarp.org (email)

Hospice Foundation of America

http://hospicefoundation.org/End-of-Life-Support-and-Resources/

Grief-Support.aspx | 1-800-854-3402 (toll-free)

info@hospicefoundation.org (email)

National Library of Medicine 

www.medlineplus.gov/bereavement.html

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END OF LIFE: HELPING WITH COMFORT AND CARE

Planning for

End - of - Life Care Decisions

Because of advances in medicine, each of us, as well as our families and 

friends, may face many decisions about the dying process. As hard as it might 

be to face the idea of your own death, you might take time to consider how 

your individual values relate to your wishes for end-of-life care. 

By deciding what end-of-life care best suits your needs when you are 

healthy, you can help those close to you make the right choices when the 

time comes. This not only respects your values, but also may give your 

loved ones comfort. 

There are several ways to make sure others know the kind of care you 

want when dying.

Talk about End-of-Life Wishes

The simplest, but not always the easiest, way is to talk about end-oflife care before an illness. Discussing your thoughts, values, and desires 

about end-of-life care before you become sick will help people who are 

6 1
PLANNING FOR CARE DECISIONS

close to you to know what care you want. You could discuss how you feel 

about using life-prolonging measures (for example, CPR or a ventilator) 

or where you would like to be cared for (for example, home or nursing 

home). Doctors should be told about these wishes as well.

For some people, it makes sense to bring this up at a small family 

gathering. Some may find that telling their family they have made a will 

(or updated an existing one) provides an opportunity to bring up this 

subject with other family members. As hard as it might be to talk about 

your end-of-life wishes, knowing your preferences ahead of time can 

make decision-making easier for your family. You may also have some 

comfort knowing that your family can choose what you want.

On the other hand, if your parents (or another close relative or friend) are 

aging and you are unsure about what they want, you might introduce the 

subject. You can try to explain that having this conversation will help you 

care for them and do what they want. You might start by talking about 

what you think their values are, instead of talking about specific treatments. 

Try saying something like, “When Uncle Isaiah had a stroke, I thought you 

seemed upset that his kids wanted to put him on a respirator.” Or, “I’ve 

always wondered why Grandpa didn’t die at home. Do you know?”

Encourage your parents to share the type of care they would choose to have 

at the end of life, rather than what they don’t want. There is no right or 

wrong plan, only what they would like. If they are reluctant to have this 

conversation, don’t force it, but try to bring it up again at a later time.

6 2
END OF LIFE: HELPING WITH COMFORT AND CARE

Prepare Advance Directives and Other 

Documents

Written instructions letting others know the type of care you want if 

you are seriously ill or dying are called advance directives. These include 

a living will and healthcare power of attorney. A living will records your 

end-of-life care wishes in case you are no longer able to speak or make 

decisions for yourself. 

You might want to talk with your doctor or other healthcare provider before 

preparing a living will. This will help you have a better understanding of 

what types of decisions might need to be made. Make sure your doctor 

and family have seen your living will and understand your instructions.

Because a living will cannot give guidance for every possible situation, you 

probably want to name someone to make care decisions for you if you are 

unable to do so for yourself. You might choose a family member, friend, 

lawyer, or someone in your religious community. Of course, you should 

make sure the person you have named (and alternates) understand your 

views about end-of-life care and are willing to make those decisions on 

your behalf. You can do this either in the advance directives or through a 

durable power of attorney for health care that names a healthcare proxy, 

who is also called a representative, surrogate, agent, or attorney-in-fact. 

Durable means it remains in effect even if you are unable to make decisions. 

A durable power of attorney for health care is a useful document if you don’t 

want to be specific—if you’d rather let a proxy evaluate each situation or 

treatment option independently. This document is particularly important 

if your healthcare proxy—the person you want to make choices for you—

is not a legal member of your family.

6 3
PLANNING FOR CARE DECISIONS

If you don’t name someone, the State you live in probably has an order of 

priority based on family relationships to determine who decides for you.

Don’t confuse a durable power of attorney for health care with a durable 

power of attorney. The first is limited to decisions related to health care, 

while the latter covers decisions regarding property or financial matters.

A lawyer can prepare these papers, or you can do them yourself. Forms 

are available from your local or State government, from private groups, 

or on the Internet. (See To Learn More about Advance Directives and 

Living Wills, page 66.) Often, these forms need to be witnessed. That 

means that people who are not related to you watch as you sign and date 

the paperwork and then sign and date it themselves as proof that the 

signature is indeed yours. 

Make sure you give copies to your primary doctor and your healthcare 

proxy. Have copies in your files as well. Hospitals might ask for a copy 

when you are admitted, even if you are not seriously ill.

You should also give permission to your doctors and insurance companies 

to share your personal information with your healthcare proxy. This lets 

your proxy discuss your case with the doctor and handle insurance issues 

that may come up.

Sometimes people change their minds as they get older or after they 

become ill. Review the decisions in your advance directives from time to 

time, and make changes if your views or your health needs have changed. 

Be sure to discuss these changes with your healthcare proxy and your 

doctor. Replace all copies of the older version with the updated ones, 

witnessed and signed if appropriate.

6 4
END OF LIFE: HELPING WITH COMFORT AND CARE

Do you live in one State, but spend a lot of time in another? Maybe 

you live in the north and spend winter months in a southern State. Or, 

perhaps your children and grandchildren live in a different State and you 

visit them often. Because States’ rules and regulations may differ, make 

sure your forms are legal in both your home State and the State you travel 

to often. If not, make an advance directive with copies for that State, too, 

and be sure your family there has a copy.

What are POLST and MOLST?

A number of States use an advance care planning form 

known as POLST (Physician Orders for Life-Sustaining 

Treatment) or MOLST (Medical Orders for Life-Sustaining 

Treatment). This form provides more detailed guidance 

about your medical care preferences.

The form is filled out by your doctor, or sometimes a nurse 

practitioner or physician’s assistant, after discussing your 

wishes with you and your family. Once signed by your doctor, 

this form has the same authority as any other medical order.

6 5
PLANNING FOR CARE DECISIONS

To Learn More about Advance Directives and Living Wills

Some resources to help you learn more about advance directives and 

living wills:

Aging with Dignity

www.agingwithdignity.org/five-wishes | 1-888-594-7437 (toll-free)

fivewishes@agingwithdignity.org (email)

American Bar Association 

www.americanbar.org | 1-800-285-2221 (toll-free)

www.americanbar.org/contactus (email form)

CaringInfo (National Hospice and Palliative Care Organization) 

www.caringinfo.org | 1-800-658-8898 (toll-free)

caringinfo@nhpco.org (email)

National Library of Medicine

www.medlineplus.gov, Search for: Advance Directives

National Cancer Institute 

www.cancer.gov/about-cancer/managing-care/advance-directives

1-800-422-6237 (toll-free) | cancergovstaff@mail.nih.gov (email)

Physician Orders for Life-Sustaining Treatment Paradigm (POLST)

www.polst.org | 1-503-494-4463 | info@polst.org (email)

PREPARE

www.prepareforyourcare.org | 1-415-735-1106

info@prepareforyourcare.org (email)

6 6
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END OF LIFE: HELPING WITH COMFORT AND CARE

They are not dead who live in the hearts they leave behind.

 — Tuscarora saying 
6 8

COMFORT CARE AT THE END OF LIFE

Closing Thoughts

Caring for someone who is dying can be hard. And, unless the death 

is unexpected and quick, there are choices to be made when the time 

comes. These may not be easy. Planning ahead and working with the 

healthcare team can help you provide needed comfort.

You will probably remember for a long time what you do for someone 

who is dying. Realize that this is a difficult time for you, too. Being a 

caregiver for someone at the end of life can be physically and emotionally 

exhausting. In the end, accept that there may be no perfect death, just 

the best you can do for the one you love. And, the pain of losing someone 

close to you may be softened a little because, when you were needed, you 

did what you could.

6 8
6 9

Resources

AARP

1-888-687-2277 (toll-free)

1-877-342-2277 (español/línea gratis)

1-877-434-7598 (TTY/toll-free)

member@aarp.org (email)

www.aarp.org

Aging with Dignity

1-888-594-7437 (toll-free)

fivewishes@agingwithdignity.org

(email)

www.agingwithdignity.org

Alzheimer’s Association

1-800-272-3900 (toll-free)

1-866-403-3073 (TTY/toll-free)

info@alz.org (email)

www.alz.org

If you are interested in learning more, here is a sampling of resources. 

Some of these are also listed at the end of most chapters.

Alzheimer’s Foundation of America

1-866-232-8484 (toll-free)

info@alzfdn.org (email)

www.alzfdn.org

American Academy of Hospice 

and Palliative Medicine

info@aahpm.org (email)

www.palliativedoctors.org

American Academy of Pain Medicine

1-847-375-4731

info@painmed.org (email)

www.painmed.org

American Bar Association

1-800-285-2221 (toll-free)

www.americanbar.org/contactus

(email form)

www.americanbar.org

6 9
7 0

American Board of Wound 

Management

1-202-457-8408

info@abwmcertified.org (email)

www.aawm.org

American Geriatrics Society

Health in Aging Foundation

1-800-563-4916 (toll-free)

info@healthinaging.org (email)

www.healthinaging.org

American Music Therapy 

Association

1-301-589-3300

info@musictherapy.org (email)

www.musictherapy.org

Association for Conflict Resolution

1-202-780-5999

admin@acrnet.org (email)

www.acrnet.org

CaringBridge

www.CaringBridge.org

CaringInfo

(See National Hospice and Palliative 

Care Organization)

Center for Elder Care and 

Advanced Illness

Altarum Institute

1-202-776-5100

eldercare@altarum.org (email)

www.altarum.org/cecai

Center for Practical Bioethics

1-800-344-3829 (toll-free)

info@practicalbioethics.org (email)

www.practicalbioethics.org

Centers for Medicare and 

Medicaid Services

1-800-633-4227 (toll-free)

1-877-486-2048 (TTY/toll-free)

www.medicare.gov

Center to Advance Palliative Care

1-212-201-2670

capc@mssm.edu (email)

www.getpalliativecare.org

Department of Veterans Affairs

Veterans Benefits Administration

Veterans Health Administration

VA benefits:

1-800-827-1000 (toll-free)

To speak with a healthcare benefits 

counselor:

1-877-222-8387 (toll-free)

www.va.gov

Donate Life America

1-804-377-3580

donatelifeamerica@donatelife.net

(email)

www.donatelife.net

Education in Palliative and 

End-of-life Care (EPEC)

1-312-503-3732

info@epec.net (email)

www.epec.net

Eldercare Locator

1-800-677-1116 (toll-free)

www.eldercare.gov

Family Caregiver Alliance

1-800-445-8106 (toll-free)

info@caregiver.org (email)

www.caregiver.org

Federal Trade Commission

1-877-382-4357 (toll-free)

www.ftc.gov

7 0

RESOURCES
7 1

END OF LIFE: HELPING WITH COMFORT AND CARE

Growth House

1-415-863-3045

info@growthhouse.org (email)

www.growthhouse.org

Hospice Association of America

National Association for Home

Care and Hospice

1-202-546-4759

www.nahc.org/

Hospice and Palliative Nurses

Association

1-412-787-9301

hpna@hpna.org (email)

http://hpna.advancingexpertcare.org

Hospice Foundation of America

1-800-854-3402 (toll-free)

info@hospicefoundation.org (email)

www.hospicefoundation.org

www.hospicedirectory.org

Hospice Net

info@hospicenet.org (email)

www.hospicenet.org

The Living Bank

1-800-528-2971 (toll-free)

info@livingbank.org (email)

www.livingbank.org

National Alliance for Caregiving

1-301-718-8444

info@caregiving.org (email)

www.caregiving.org

National Alliance for 

Hispanic Health

1-866-783-2645 (English and

Spanish; toll-free)

membership@healthyamericas.org

(email)

www.hispanichealth.org

National Cancer Institute

1-800-422-6237 (toll-free)

cancergovstaff@mail.nih.gov (email)

www.cancer.gov

www.cancer.gov/cancertopics/

factsheet/support/end-of-life-care

National Hospice and Palliative 

Care Organization

1-800-658-8898 (toll-free)

caringinfo@nhpco.org (email)

www.caringinfo.org

www.nhpco.org

National Institute of Nursing 

Research

1-301-496-0207

info@ninr.nih.gov (email)

www.ninr.nih.gov

National Library of Medicine

www.medlineplus.gov

Search for:

“Advance Directives”

“Bereavement”

“End-of-Life Issues”

“Hospice Care”

“Organ Donation”

“Pain”

OrganDonor.gov

Health Resources and Services 

Administration

U.S. Department of Health and 

Human Services

donation@hrsa.gov (email)

www.organdonor.gov

Physician Orders for Life-Sustaining 

Treatment Paradigm (POLST)

1-503-494-4463

info@polst.org (email)

www.polst.org

7 1
RESOURCES

PostHope

http://posthope.org

PREPARE

1-415-735-1106

info@prepareforyourcare.org (email)

www.prepareforyourcare.org

Society of Critical Care Medicine

1-847-827-6869

info@sccm.org (email)

www.myicucare.org/Pages/default.aspx

Social Security Administration

1-800-772-1213 (toll-free)

1-800-325-0778 (TTY/toll-free)

www.socialsecurity.gov

U.S. Department of Health and 

Human Services

www.alzheimers.gov

Visiting Nurse Associations

of America

1-888-866-8773 (toll-free)

vnaa@vnaa.org (email)

www.vnaa.org

Well Spouse Association

1-800-838-0879 (toll-free)

info@wellspouse.org (email)

www.wellspouse.org

What Matters Now

www.whatmattersnow.org

For more information on health and 

aging, contact:

National Institute on Aging 

Information Center

P.O. Box 8057

Gaithersburg, MD 20898-8057

1-800-222-2225 (toll-free)

1-800-222-4225 (TTY/toll-free)

niaic@nia.nih.gov (email)

www.nia.nih.gov

To order publications (in English 

or Spanish) or sign up for regular 

email alerts about new publications 

and other information from the NIA, 

go to www.nia.nih.gov/health.

Visit www.nihseniorhealth.gov, a 

senior-friendly website from the 

National Institute on Aging and the 

National Library of Medicine. This 

website has health and wellness 

information for older adults, including

information about end of life care. 

Special features make it simple to 

use. For example, you can click on 

a button to make the type larger.

To learn more about Alzheimer’s 

disease, contact NIA’s ADEAR 

Center at:

Alzheimer’s Disease Education and 

Referral (ADEAR) Center

1-800-438-4380 (toll-free)

adear@nia.nih.gov (email)

www.nia.nih.gov/alzheimers

7 2
Photos: Cover and pages 2, 18, 33, 50, 67—Pam Soorenko, Photogroup, Silver Spring, MD

Page 73—Stock photo, MediaBakery.com, Santa Barbara, CA

We would like to thank these groups for their help with photography for this publication—the NIH Clinical 

Center, the NIH Clinical Center fifth floor nursing staff, and the Berry-Woodyard family of Takoma Park, MD.
NATIONAL INSTITUTE ON AGING | NATIONAL INSTITUTES OF HEALTH

U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES

July 2016

NIH Publication No. 16-6036