Helping With Comfort and Care

Enduof u Life

NATIONAL INSTITUTE ON AGING NATIONAL INSTITUTES OF HEALTH 

U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES
National Institute on Aging

Office of Communications and Public Liaison

Bethesda, MD 20892-2292

www.nia.nih.gov

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 3 Introduction 

 5 Providing Comfort at the End of Life 

18 Finding Care at the End of Life 

32 Dementia at the End of Life 

36 Understanding Health Care Decisions 

48 What Happens When Someone Dies 

51 Things to Do After Someone Dies

54 Getting Help for Your Grief

57 Planning for End-of-Life Care Decisions

63 Closing Thoughts

64 Resources 

Enduof u Life

Helping With Comfort and Care
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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 failing. For some older people, the body weakens 

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

losses take a huge toll. But for everyone, death is inevitable, and 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 just 

in the moments before breathing finally stops and a heart ceases 

to beat. An older person is often living, and dying, with one or more 

chronic illnesses and needs a lot of care for days, weeks, and sometimes 

even months.

End of Life: Helping With Comfort and Care hopes to make the unfamiliar 

territory of death slightly more comfortable for everyone involved. This 

publication is based on research, such as that supported by the National 

Institute on Aging, part of the National Institutes of Health. This research 

base is augmented with suggestions from practitioners with expertise in 

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Introduction

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INTRODUCTION

helping individuals and families through this difficult time. Throughout 

the booklet, the terms comfort care, supportive care, and palliative care 

are used to describe individualized care that can provide a dying person 

the best quality of life until the end. Most of the stories in this booklet 

are fictitious, but they depict situations that reflect 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 places and a variety of 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. 

Helping With Comfort and Care provides an overview of issues commonly 

facing people caring for someone nearing the end of life. It can help you 

to work with health care providers to complement their medical and 

caregiving efforts. The booklet does not replace the personal and specific 

advice of the doctor, but it can help you make sense of what is happening 

and give you a framework for making care decisions. 

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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 goal is to prevent or 

relieve suffering as much as possible while respecting the dying person’s 

wishes. 

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

a parent or grandparent, your husband or wife, a favorite aunt or uncle, 

your best friend? You wonder what will happen. You want to know how 

to give comfort, what to say, what to do. At the same time, you’re possibly 

unsure about what is needed, worried about doing the wrong thing, or 

afraid of being there—or not being there—at the moment of death.

You might be giving day-to-day care to the dying person, chosen to make 

health care decisions, or a close family member or friend who wants to 

help. You would like to know how to make dying easier—how to help 

ensure a “good death,” with treatment consistent with the dying person’s 

wishes.

Providing Comfort

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at the End u of u Life
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A “good 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 having your end-of-life wishes followed, whatever they are, 

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.

In this chapter you will find a number of ways you can be of help to someone who is dying. Always remember to check with the health care team to 

make sure these suggestions are appropriate.

Comfort needs near the end of life:

u Physical Comfort

u Mental and Emotional Needs

u Spiritual Issues

u Practical Tasks

PROVIDING COMFORT
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 health care provider can do, depending on the cause. For example, a 

dying person can be uncomfortable because of:

u Pain

u Breathing problems

u Skin irritation

u Digestive problems

u Temperature sensitivity

u 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 overwhelming pain is hard to manage. Try to make sure that the level 

of pain does not “get ahead” of pain-relieving medicines. If the pain is not 

controlled, ask the doctor or nurse to arrange for consultation with a pain 

management specialist. 

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 

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HELPING WITH COMFORT AND CARE
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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 vaporizer, or having a fan circulating 

air in the room. Sometimes, the doctor suggests extra oxygen, given directly through the nose, to help with this problem.

People very near death might have noisy breathing 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 to help clear this up. But not all 

noisy breathing is a death rattle. And, it may help to know that this noisy 

breathing is usually not upsetting to the person dying, even if it is to family 

and friends. 

What about morphine? 

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. 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.

PROVIDING COMFORT
HELPING WITH COMFORT AND CARE

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

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

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

relieve dry skin as well as 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 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 a 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. Or try putting a foam pad under an area like a heel or elbow to raise it off the bed 

and reduce pressure. A special mattress or chair cushion might also help. 

Keeping the skin clean and moisturized is always important. A bed sore 

that won’t heal probably needs treatment by a wound specialist.

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

are common end-of-life complaints. 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. 
If someone near death wants to eat, but is too tired or weak, you can help 

with feeding. If loss of appetite is a problem, encourage eating by gently 

offering favorite foods in small amounts. Or try serving frequent, smaller 

meals rather than three big ones. But, don’t 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. 

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, but 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. 

Medical tests and treatments can be uncomfortable and can drain the 

strength of a person who is dying. Some may no longer be necessary and can 

be stopped, as one woman’s family learned. At eighty, Catherine had already 

been in a nursing home for two years since her stroke. Her health began to 

fail quickly, and she was no longer able to communicate her wishes. Her 

physician, Dr. Jones, told her family she was dying. He said that medical 

PROVIDING COMFORT

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HELPING WITH COMFORT AND CARE

tests, physical therapy, and IVs (intravenous tubes inserted into a vein with 

a needle to give medicine or fluids) were no longer really needed and should 

be stopped since they might be causing Catherine discomfort. Dr. Jones also 

said that checking vital signs (pulse, blood pressure, temperature, and breathing rate) was interrupting her rest and would no longer be done regularly.

Then Catherine developed pneumonia. Her family asked about moving 

her to the hospital. The doctor explained that Catherine could get the 

same treatment—antibiotics, if chosen, and oxygen—in the familiar surroundings of her nursing home. Besides, he said a move could disturb and 

confuse her. The family agreed to leave Catherine in the nursing home, 

and she died two 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 

any mental and emotional distress. Someone nearing the end of life who 

is alert might understandably feel depressed or anxious. Encouraging conversations about feelings might be beneficial. You might want to contact 

a counselor, possibly one familiar with end-of-life issues. If the depression 

or anxiety is severe, medicine might provide relief. 

A dying person might 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 
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or what to say, sometimes they stop visiting. Or, someone who is already 

beginning to grieve may withdraw. Doctors may become discouraged because they can’t cure their patient and feel helpless. Some seem to avoid 

a dying patient. This can add to a dying person’s sense of isolation. If this 

appears to be happening, try to 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 the kind of mood that is most comforting for the dying person. 

What has he or she always enjoyed? For example, Bill loved a party, so it 

was natural for him to want to be surrounded by family and friends when 

he was dying. Ellen always preferred 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 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.

Spiritual Issues

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

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

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

PROVIDING COMFORT
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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. Praying, talking with someone from one’s religious 

community (such as a minister, priest, rabbi, or Muslim cleric), reading 

religious text, 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, 

Bob. 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 one 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. 

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.
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Practical Tasks

There are many practical jobs that need to be done at the end of life—

both to relieve the dying person 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 answering the door, picking up the mail or newspaper, writing down phone messages, doing a load of laundry, feeding the family 

pet, taking children to soccer practice, picking medicine up from the 

pharmacy—can provide a much needed break for caregivers. 

A dying person 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, 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 dying person. 

If you are the primary caregiver, try to ask for help when you need it. 

Don’t hesitate to suggest a specific task to someone who offers to help. 

PROVIDING COMFORT
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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. 

Setting up a phone tree or computer listserv for the family to contact friends 

and other relatives can reduce the number of calls to the house. A listserv is 

a way to send the same message to a large group of people through email. 

Some families set up a website where they can share news, thoughts, and 

wishes. These can all save close family members from the emotional burden 

of answering frequent questions about how their loved one is doing.

Questions to Ask

This section has described what family and friends can do to provide 

comfort and ease to someone nearing the end of life. Here are some 

questions to help you learn more about what you might do.

Ask the doctor in charge:

1. Since there is no cure, what will happen next?

2. Why are you suggesting this test or treatment?

3. Will the treatment bring physical comfort?

4. Will the treatment speed up or slow down the dying process?

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

Ask the caregiver:

1. How are you doing? Do you need someone to talk with? 

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

you are away.

HELPING WITH COMFORT AND CARE
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3. Who has offered to help you? Do you want me to work with them to 

coordinate our efforts?

4. 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?

To Learn More

 About Comfort Care:

u For more detailed information:

Caring Connections (National Hospice and Palliative Care Organization)

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

u For information about caring for wounds:

American Academy of Wound Management

www.aawm.org u 202-457-8408

u For online tips for family caregivers:

Center for Caregiver Training

www.caregiving101.org 

u For “Patient/Family Teaching Sheets” with caregiving tips:

Hospice and Palliative Nurses Association

www.hpna.org 

u For a music therapist:

American Music Therapy Association 

www.musictherapy.org u 301-589-3300

u For information about managing pain:

American Academy of Pain Medicine 

www.painmed.org u 847-375-4731

PROVIDING CARE
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Death does not sound a trumpet. 

 — African proverb
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.

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

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, of course, how they will manage the cost. 

Hospitals and Nursing Homes

George is sixty-four and has a history of congestive heart failure. One 

night he is taken to the hospital with chest pain. George and those closest 

to him had previously decided that, no matter what, the doctor should 

try to do everything medically possible to extend George’s life. So, when 

Finding Care

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at the End u of u Life
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George needed care, he went to a hospital, where doctors and nurses 

are available around-the-clock. Hospitals offer a full range of treatment 

choices, tests, and other medical care. If George’s heart continues to fail, 

the hospital intensive care unit (ICU) or coronary care unit (CCU) is 

right there. Although hospitals have rules, they can sometimes be flexible. 

If George’s doctor thinks he is not responding to treatment and is dying, 

the family can ask for relaxed visiting hours. If George’s family wants to 

bring personal items from home, they can ask the staff if there are space 

limitations or if disinfection is needed. Whether George is in the ICU, 

CCU, or a two-bed room, his family can ask for more privacy.

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 at the end of this section for links and 

telephone numbers for services that are Federal government 

programs.

HELPING WITH COMFORT AND CARE

In a hospital setting, there is always medical staff available who know 

what needs to be done for someone who is dying. This can be very reassuring for that person, as well as for family and friends. 

More and more people are in nursing homes at the end of life. In a nursing home, nursing staff is also always present. A nursing home, sometimes 
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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, that is, they are parts of a hospital 

where more seriously ill patients can benefit from speciallytrained staff that 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 through the mouth or 

trachea (windpipe) 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 health care team might talk to the 

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

considering whether or not to continue intensive treatment.

FINDING CARE
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HELPING WITH COMFORT AND CARE

called a skilled nursing facility, has advantages and disadvantages for endof-life care. Unlike a hospital, a doctor is not in the nursing home all the 

time. But, plans for end-of-life care can be arranged ahead of time, so that 

when the time comes, care can be provided as needed without first consulting a doctor. If the dying person has lived in the facility for a while, the 

staff and family have probably already established a relationship. This can 

make the care feel more personalized than in a hospital. As in a hospital, 

privacy may be an issue. 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 end-oflife 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 they are willing to take on. 

Hiring a home nurse is an option for people who need additional help.

In order 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. Work with the 

doctor to decide what is needed to support comfort care at home. If the 

dying 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 page 30 to learn how to contact your Area Agency on Aging). 
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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 the 

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

a treatment is no longer helping.

Palliative Care and Hospice 

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

a cure for as long as possible. These patients also receive symptom care 

or palliative care. For example, in time George developed anemia along 

with his heart failure. Managing the anemia can improve some of the 

symptoms troubling George. It might also make it easier for him to do 

things like get dressed or bathe on his own. Treating his anemia is part of 

palliative care. 

Recently, the term palliative care has come to mean more than just treating symptoms. In the United States, palliative care now often refers to a 

comprehensive approach to improving the quality of life for people who 

are living with potentially fatal diseases. It provides support for family 

members, very similar to the more familiar concept of hospice care. 

In a palliative care program, a multidisciplinary health care team works 

with both the patient and family to provide any support—medical, social, 

and emotional—needed to live with a possibly fatal illness. The health 

care team may be made up of doctors, nurses, therapists, counselors, 

social workers, and others as needed. 

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HELPING WITH COMFORT AND CARE

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

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

Medicare covers some of the treatments and medicine. 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.

In palliative care, you aren’t asked to make a choice between treatment 

that might cure a terminal disease and comfort care. In time, if the 

doctor believes the patient is not responding to treatment and is likely 

to die within 6 months, there are two possibilities. Palliative care could 

transition to hospice care. Or, the palliative care could continue, with 

increasing emphasis on comfort care and less focus on medical treatment 

aimed at a cure. 

Who can benefit from palliative care? 

Palliative care is not just for people who might die soon. It is 

a resource for anyone with a long-term disease that will, in 

time, probably cause their death. These include heart failure, 

chronic obstructive pulmonary disease, or Parkinson’s 

disease. The organized services available through palliative 

care could also be helpful to any older person having a lot of 

general discomfort and disability very late in life.
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That is what happened with Jack, retired from the U.S. Air Force, who 

was diagnosed with chronic obstructive pulmonary disease at age seventy. 

As the disease progressed and breathing became more difficult, Jack wanted 

to explore experimental treatments to slow the disease. Through the 

palliative care provided by the Veterans Health Administration, while 

receiving treatment for his pulmonary disease, Jack was also able to 

receive the comfort care and emotional support he needed to cope with his 

health problems. The palliative care program also provided help around 

the house and other support for Jack’s wife, making it easier for her to care 

for Jack at home. 

At some point, curative medical treatment may no longer make sense—

it might not help or may actually make the patient more uncomfortable. 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. The hospice approach to end-of-life care is similar to palliative care, in that 

it provides comprehensive comfort care to the dying person as well 

as support to his or her family, but, in hospice, attempts to cure the 

person’s illness are stopped. 

Hospice is an approach to care, and 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. 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, 

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HELPING WITH COMFORT AND CARE

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

support needed. A member of the hospice team visits regularly and is 

always available by phone—24 hours a day, 7 days a week. 

It is important to remember that stopping treatment specifically 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, but other medical care may continue. For example, if the person has high blood pressure, 

he or she will still get medicine for that. 

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

Delores was eighty-two 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 Delores began hospice care. A week later she learned 

that her granddaughter was pregnant. Delores changed her mind about 

using hospice care and left to begin dialysis in the hopes of one day 

holding her first great-grandchild.

Similar to Delores, real-life humorist and Washington Post columnist 

Art Buchwald, age eighty-one, decided against the kidney dialysis 

suggested by his doctor. Buchwald entered hospice in February 2006,

expecting to die of kidney disease within a few weeks. It was big news 

when his condition stabilized. When it became clear death was not imminent, Buchwald left hospice. He spent the summer in Martha’s Vineyard 

and died in January 2007.
26

FINDING CARE

Palliative Care HOSPICE

Who can be 

treated?

Anyone with a 

serious illness

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?

u Home

u Assisted living facility

u Nursing home

u Hospital

u Home

u Assisted living facility

u Nursing home

u Hospice facility

u 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.

Some Differences Between Palliative Care and Hospice
27

HELPING WITH COMFORT AND CARE

Eighty-year-old Annie had advanced lung cancer and asked for help 

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

for more than 40 years. A hospice team helped her family and friends with 

caregiving and everyday activities. They arranged respite care for Annie’s 

family—once she went into a facility for a few days to give her husband 

a break. Respite care can be for as short as a few hours or for as long as 

several weeks. After Annie died, hospice continued to support her family 

offering bereavement counseling for a year. 

Hospice care was a relief for Annie who didn’t want to be a burden to her 

relatives in her last days. Hospice services also greatly reduced the stress of 

caregiving for Annie’s family. In fact, a widow or widower is less likely to 

die within 18 months after the death of a spouse if that spouse received 

hospice services. This was true for Annie’s husband who weathered the 

sadness of her loss without having his health decline. Families of people 

who received care through a hospice program are also more satisfied with 

Art Buchwald on leaving the hospice: 

u I maintained everyone has to die—I still do. The hospice 

gives a person the opportunity to die with dignity. It provides 

care, help, and as much comfort as possible.

u In spite of the fact that I’ve been staying in a hospice, I’m not 

going to heaven immediately. My doctor informs me that I 

can stop over on Martha’s Vineyard on the way there.

Art Buchwald, Too Soon to Say Goodbye, (New York: Random House, 2006).
28

What does the hospice “6-month requirement” mean? 

Some people misinterpret their doctor’s 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, older people can receive hospice care through Medicare if their health care provider thinks they have less than 6 

months to live. Doctors have a hard time predicting how long 

an older, frail 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 health care provider still 

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

FINDING CARE
29

HELPING WITH COMFORT AND CARE

end-of-life care than are those of people who did not have hospice services. Hospice recipients are more likely to have their pain controlled and 

less likely to undergo tests or be given medicines they don’t need than 

people who don’t use hospice care. 

Before Annie died, she chose to receive hospice care and agreed to give 

up treatment, such as chemotherapy and radiation, to try to cure her 

lung cancer. But she continued to receive comfort care and counseling. 

If Annie had changed her mind, she could have left hospice care and 

received treatment for her cancer. 

Questions to Ask

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.

1. How long is this person expected to live?

2. What kind of end-of-life care is needed?

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

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

care—a facility or at home, for example?

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

6. Who will pay for this care?

7. Can children, grandchildren, friends, pet, etc., visit whenever 

they want?

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

reverse the dying process, or instead draw it out?
30

To Learn More

About Hospice or Palliative Care:

u American Hospice Foundation

www.americanhospice.org u 800-347-1413 (toll-free)

u Center to Advance Palliative Care

www.getpalliativecare.org u 212-201-2670

u Centers for Medicare & Medicaid Services

www.medicare.gov u 800-633-4227 (toll-free)

u Department of Veterans Affairs

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

u National Hospice and Palliative Care Organization

www.nhpco.org u 800-658-8898 (toll-free)

u Visiting Nurse Associations of America

www.vnaa.org u 617-737-3200

To contact your Area Agency on Aging:

u Eldercare Locator

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

FINDING CARE
31

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

As they reach the end of life, people suffering from conditions like 

Alzheimer’s disease (AD) or Parkinson’s disease can present special problems for caregivers. People live with these diseases for years, becoming 

increasingly disabled. Because they do not die soon after they are diagnosed, it can be hard to think of these as terminal diseases. But they do 

contribute to death. 

Illnesses like Alzheimer’s disease make 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, they cannot 

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

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

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

As these conditions progress, they also obstruct efforts 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 

Q

32

at the End u of u Life
HELPING WITH COMFORT AND CARE

33

been. Palliative care or hospice 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 to people with Alzheimer’s disease. Being 

touched or massaged and listening to music, “white” noise, or sounds from 

nature seem to soothe some people and lessen their agitation. 

When an illness 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 people can no longer legally 

complete documents like advance directives. That didn’t happen in Ethel’s 

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

AD was the cause of her forgetfulness, they never talked about what the 

future would bring. As time passed and the disease eroded Ethel’s memory 

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

her concerns and desires with those close to her. This made it hard for her 

daughter Barbara to know what Ethel needed or wanted. Barbara’s decisions, therefore, had to be based on what she knew about her mom’s values 

and priorities, rather than on what Ethel actually said she would like.

Quality of life is an important issue when making health care decisions for 

people with Alzheimer’s disease. For example, there are medicines available 

that might slow the progression of this devastating disease for a short time 

in some patients, generally early in the illness. However, in more advanced 

AD, some caregivers might not want these drugs prescribed. They may 

believe that the quality of life is already so diminished and that the medicine 

is unlikely to make a difference. If the drug has serious side effects, they are 

even more likely to decide against it. 
34

End-of-life care decisions are more complicated for caregivers if the dying person has not expressed the kind of end-of-life 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. Ethel was like that. She and 

Barbara never talked about things like feeding tubes, machines that help 

with breathing, antibiotics for pneumonia, or transfers to the hospital. So 

when doctors raised some of these questions, Barbara didn’t know how to 

best reflect her mother’s wishes. When making care decisions for someone 

else near the end of life, it is important to consider how a treatment will 

benefit the person and what the side effects and risks might be. Sometimes 

you might decide to try the health care team’s suggestion for a short time. 

Other times you might decide that the best choice is to do nothing. 

Alzheimer’s disease and similar conditions often progress slowly and 

unpredictably. Experts suggest that signs of the final stage of Alzheimer’s 

disease include some of the following:

u Being unable to move around on one’s own

u Being unable to speak or make oneself understood

u Needing help with most, if not all, daily activities

u Eating problems such as difficulty swallowing or no appetite 

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

hospice and palliative care experts might also be of help identifying when 

someone in the final stage of Alzheimer’s disease is beginning to die.

Caring for people with Alzheimer’s disease 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.” 

DEMENTIA
35

HELPING WITH COMFORT AND CARE

More than half of one group of family caregivers reported cutting back on 

work hours or giving up their jobs because of the demands of caregiving. 

Most of those family members taking care of dying Alzheimer’s disease 

patients at home expressed relief when death happened—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—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. 

Questions to Ask

You will want to understand how the available medical options presented 

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

want to ask questions such as:

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

quality of life? Will it make a difference?

2. If considering hospice for your relative with Alzheimer’s disease, does 

the facility have special experience with people with dementia?

To Learn More

About Dementia and Caregiving for People With Dementia:

u Alzheimer’s Disease Education and Referral Center

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

u Alzheimer’s Association

www.alz.org u 800-272-3900 (toll-free)
Health Care Decisions

Q

36

Understanding

It can be overwhelming to be asked to make health care decisions for 

someone who is dying and no longer able to make his or her own decisions. It is even more difficult if you do not have written or even verbal 

guidance (see pages 58-61). 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. 

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. That is 

called substituted judgment. Sheila’s ninety-year-old mother, Esther, was 

in a coma after having a major stroke. The doctor said damage to Esther’s 

brain was widespread and she needed to be put on a breathing machine 

(ventilator) or she would probably die. The doctor asked Sheila if she 

wanted that to be done. Sheila remembered how her mother disapproved 

when an elderly neighbor was put on a similar machine after a stroke. 

She decided to say no, and her mother died peacefully a few hours later. 

Some experts believe that decisions should be based on substituted judgment whenever possible, but decision-makers sometimes combine that 

with another method.
37

The other approach, known as best interests, is to decide what would be 

best for the dying person. Jim’s father, Sam, is eighty and has lung cancer, 

as well as advanced Parkinson’s disease. He is in a nursing facility and 

doesn’t seem to recognize Jim when he visits. Sam’s doctor suggested that 

surgery to remove part of a lung might slow down the course of the cancer 

and give Sam more time. But, Jim thought, “What kind of time? What 

would that time do for Dad?” Jim decided that putting his dad through 

surgery and recovery was not in Sam’s best interests. 

If you are making decisions for someone at the end of life and trying to 

use one of these approaches, it may be helpful to think about the following:

u Has the dying person ever talked about what he or she would want 

at the end of life? 

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

being treated?

u 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. 

You might ask the doctor:

u What can we expect to happen in the next few hours, days, or weeks? 

u Why is this new test being suggested? 

u Will it change the current treatment plan? 

u Will a new treatment help my relative get better?

HELPING WITH COMFORT AND CARE
38

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

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

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

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

For any reason?

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

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

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

u 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 useful during this emotional time. 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. Do not be reluctant to 

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. You 

may want to get pager numbers, email, or cell phone numbers. 

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 health care choices before becoming 

unable to do so. That is not unusual, but it is probably a good idea to choose 

one person to be the spokesperson and the contact person when dealing 

with medical staff. The doctor and nurses will appreciate answering 

questions from only one person. Even if one family member is named as 

HEALTH CARE DECISIONS
39

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 decisionmaker, or even a spokesperson, the family might need to hire a mediator, 

someone trained to bring people with different opinions to a common 

decision. (See To Learn More on page 46.) In any case, as soon as possible 

after the doctor says the patient is dying, the family should try to discuss 

with the medical team what approach to end-of-life care they want for 

their family member. That way, decision making for crucial situations can 

be planned and does not have to be done quickly.

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 health care team to explain the treatment plan and what 

you can expect to happen. But there are other issues that you need 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 health care team to “do everything” 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?

Here are some common end-of-life issues like those—they will give you 

a general understanding and may help in your conversations with the 

doctors. 

If we say “do everything,” 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 machine to help with breathing (ventilator) 

HELPING WITH COMFORT AND CARE
40

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. “Doing everything” does not include medical treatments 

intended to cure a medical condition, such as surgery or chemotherapy. 

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. In 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 restart the heart, 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, especially in an elderly person who is 

already failing. 

What if someone needs help breathing or completely stops breathing (respiratory arrest)? Sometimes doctors suggest using a ventilator 

(a respirator or breathing machine)—the machine 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. If the person needs ventilator support for more than a few days, the doctor will probably suggest a 

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

collapsed lung, plugged tracheotomy tube, or bleeding.

HEALTH CARE DECISIONS
41

HELPING WITH COMFORT AND CARE

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

to restore a heart beat or breathing? As soon as the decision that medical staff should not do CPR or other life-support procedures is made by the 

patient or the person making health care decisions, the doctor-in-charge 

should be told of this choice. 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), or DNI (Do Not Intubate). 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. Without a non-hospital DNR, in 

many places EMTs are required to perform CPR and similar techniques 

when called to a home. 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. This is a pacemaker that also shocks the heart back into regular beats 

when needed. The ICD should be turned off at the point when life support is no longer wanted. This can be done without surgery.

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

eat or drink, even when spoon fed, the doctor might suggest a feeding 

tube. While recovering from an illness, a feeding tube can be helpful. But 
42

at the end of life, a feeding tube might cause more discomfort than not 

eating. 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 that received through a feeding tube. 

If tube feeding is going to be tried, there are two methods that can 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. If so, the doctor might 

try a smaller, child-sized tube. 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 also called a PEG tube for percutaneous endoscopic gastrostomy tube. 

These carry risks of infection, pneumonia, and nausea. 

Some people try tube feeding for a short time to see if it makes a difference, while keeping open the option of removing the tube if there is no 

improvement. Talk to the doctor about how the feeding tube could help 

and how long it makes sense to try it.

Refusing food might be a conscious decision—a part of the dying person’s 

understanding that death is near. The decision-maker should think carefully 

about doing something that might be against the dying person’s wishes. 

Should someone dying be sedated? Sometimes very near the end of 

life, the doctor might suggest sedation to manage symptoms that are not 

HEALTH CARE DECISIONS
43

HELPING WITH COMFORT AND CARE

responding to treatment and still make the patient uncomfortable. This 

means using medicines to put the patient in a sleep-like state. Sedation 

doesn’t cause a person to die more quickly. 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, are 

often caused by bacteria and are common in older people who are dying. 

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. Tom was eighty-three and had lived in a nursing home for 

several years with advanced Parkinson’s disease when he choked on some 

food causing him to inhale a small amount into his lungs. As a result, Tom 

developed aspiration pneumonia. The doctors assured his wife that they 

could keep Tom 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 

is completely legal—whether the choice is made by someone who is 

dying or by the one making health care 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.” 
44

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 especially 

be a problem 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 (see page 58) explaining the patient’s 

preferences, those guidelines should determine care. Without the guidance 

of an advance directive, if there is 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. An arbitrator (mediator) can sometimes 

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

on page 46.)

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 

alter expectations, needs, and choices. You may come from a different 

background than the doctor you are working with. You might be used to 

a different approach to talking about what is happening or making health 

care decisions at the end of life than the medical staff is. For example, 

many health care providers look to a single person—the dying person or 

his or her chosen representative—for important health care decisions at 

the end of life. But, in some cultures the entire immediate family takes on 

that role, something American doctors might not expect. It is helpful to 

HEALTH CARE DECISIONS
45

HELPING WITH COMFORT AND CARE

discuss your personal and family traditions with your doctors and nurses. 

Don’t be reluctant to say what you want. Each person—each family—is 

entitled to the end-of-life care that best matches their beliefs and rituals. 

Make sure you understand how the available medical options presented 

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

If there are religious or cultural customs surrounding death that are 

important to you, tell the health care providers with whom you are 

working. Knowing that these practices will be honored could ease the 

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

confusion and misunderstanding when death occurs.

Questions to Ask

Here are some examples of the kinds of questions you might want to ask 

the medical staff caring for the dying person:

1. What is the care plan?

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

stop, how will that be done?

3. If we try the treatment plan you are suggesting and then decide to 

stop, what will happen? 

4. 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?

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

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

condition?

7. Will you call me if there is a change in his or her condition? 
46

Things to Share

Make sure the health care team knows what is important to your family 

surrounding the end of life. You might say: 

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

regarding death).

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

at the time of death).

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

you hope to have happen).

To Learn More 

About Decisions You Might Need to Make:

u Society of Critical Care Medicine

www.sccm.org u 847-827-6869

u Family Caregiver Alliance

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

About Family Mediation:

u Association for Conflict Resolution

www.acrnet.org u 202-464-9700

HEALTH CARE DECISIONS
47

We understand death for the first time when 

he puts his hand upon one whom we love. 

 — Madame deStael (1766-1817) 
When Someone Dies

Q

When death comes suddenly, there is little time to prepare. On the other 

hand, 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.

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

experiences very near the end:

u Shortness of breath, known as dyspnea

u Depression

u Anxiety

u Tiredness and sleepiness

u Mental confusion

u Constipation or incontinence

u Nausea 

u Refusal to eat or drink

48

What Happens
49

HELPING WITH COMFORT AND CARE

Each of these symptoms, taken alone, is not a sign that someone is dying. 

But, for someone with a serious illness or declining health, these might 

suggest that that person is nearing the end of life.

In addition, 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 doesn’t breathe for many seconds, known as Cheyne-Stokes breathing. Some people hear a death rattle. That is noisy breathing that makes a 

gurgling or rattling sound. Finally, 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. You

need to eat and rest. 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 when visitors leave. Of course, experts have no 

way to prove that’s what happened.
50

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. 

Calling 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, 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” 

(see page 41) if the person is dying at home.

WHEN SOMEONE DIES
Q

Things to Do

Immediately following death, nothing has to be done. Take the time you 

need to start the grieving process. 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 is at home, there is no need to move the body 

right away. If your religious, ethnic, or cultural background requires any 

special customs soon after death, there should be time for that now. If 

the death is 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 that 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 

Q

51

After Someone Dies
52

community 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 “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. Usually this is done by a funeral home. The hospital or nursing facility, 

if that is where death takes 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 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. 

THINGS TO DO
53

HELPING WITH COMFORT AND CARE

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 dies to be transplanted 

into living people who need them. People of any age can be 

an organ donor. The person who is dying may have already 

indicated they would like to be an organ donor. Some states 

include it 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 

use the donated organs. 

To Learn More 

About Funerals:

u AARP

www.aarp.org u 888-687-2277 (toll-free)

u Federal Trade Commission

www.ftc.gov/bcp/conline/edcams/funerals u 877-382-4357 (toll-free)

About Organ Donation:

u Donate Life America

www.shareyourlife.org u 804-782-4920

u Living Bank

www.livingbank.org u 800-528-2971 (toll-free)
Losing someone close to you can make you feel sad, lost, alone, and 

maybe even angry. You greatly miss the person who has died—you want 

them 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 grieving, a normal reaction to the loss of someone you love. 

There are many ways to grieve and to learn to accept this 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, consumed, or very depressed by it. 

Family and friends can be a great support. They are grieving too, and 

some people find that sharing memories is one way you can help each 

other. Feel free to talk about the one who is gone. Sometimes people hesitate to bring up the loss or mention the dead person’s name as they worry 

this can be hurtful. But everyone may find it helpful to talk directly about 

their loss. Shortly after Carol’s husband Doug died, her friends started 

coming over with dinners as well as memories to share. They would sit 

around Carol’s dining table for hours remembering Doug’s humor and 

54

Getting Help

Q

for Your Grief
HELPING WITH COMFORT AND CARE

55

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

Sometimes people find grief counseling makes it easier to work through 

their sorrow. There are grief counselors who will talk with you one-onone. Regular talk therapy can help people learn to accept a death and, 

in time, create 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 just generally 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. Even if hospice was not used 

before the death, you can ask hospice workers for bereavement support 

at this time. If the death happened at a nursing home or hospital, there is 

often a social worker you can ask for resources that can help. 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 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. 
56

To Learn More 

About Dealing With Grief:

u AARP

www.aarp.org u 888-687-2277 (toll-free)

u American Hospice Foundation

www.americanhospice.org u 800-347-1413 (toll-free)

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.

56

GETTING HELP
57

HELPING WITH COMFORT AND CARE

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 idea of a good death. 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 allows those closest to 

you the comfort of feeling as though they can be helpful. 

There are several ways to make sure others know the kind of care you want 

when dying.

Talking About End-of-Life Wishes

The simplest, but not always the easiest, way is to talk about end-of-life 

care before an illness. Discussing your thoughts, values, and desires will 

help people who are close to you to know what end-of-life care you want. 

57

Planning for

Q

End - of - Life Care Decisions
For example, you could discuss how you feel about using life-prolonging 

measures or where you would like to be cared for. For some people, it 

makes sense to bring this up at a small family gathering. Others 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. Doctors should be told about these wishes as well. 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 are aging and you are concerned 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 Walt had a stroke and died, 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.

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 health care power of attorney. A living will records your 

PLANNING FOR CARE DECISIONS

58
59

end-of-life care wishes in case you are no longer able to speak for yourself. 

You might want to talk with your doctor or other health care provider before preparing a living will. That way you will 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. You can do this either in 

the advance directives or through a durable power of attorney for health care

that names a health care 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 useful if you don’t want to be specific—if you would rather let the health 

care proxy evaluate each situation or treatment option independently. A 

durable power of attorney for health care is also important if your health care 

proxy, the person you want to make choices for you, is not a legal member 

of your family. Of course, you should make sure the person and alternate(s) 

you have named understand your views about end-of-life care. 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. A few states let 

people name a health care proxy by telling their doctor, without paperwork. 

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.

HELPING WITH COMFORT AND CARE
60

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 on page 61.) 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 health care 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. 

Sometimes people change their mind 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 health care proxy and your 

doctor. Replace all copies of the older version with the updated ones, 

witnessed and signed if appropriate. 

You should also give permission to your doctors and insurance companies to share your personal information with your health care proxy. This 

lets that person discuss your case with your doctor and handle insurance 

issues that may come up.

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 possibly 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 advanced directive with copies for that state also. 

And make sure your family there has a copy.

PLANNING FOR CARE DECISIONS
61

To Learn More 

About Advance Directives and Living Wills:

u American Bar Association

www.abanet.org u 800-285-2221 (toll-free)

u Caring Connections (National Hospice and Palliative Care Organization)

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

u Medlineplus.gov

www.medlineplus.gov, go to: Advance Directives

u National Cancer Institute

www.cancer.gov u 800-422-6237 (toll-free)

HELPING WITH COMFORT AND CARE
They are not dead who live in the hearts they leave behind.

 — Tuscarora saying 

62
63

Closing Thoughts

Q

Many Americans have little experience with someone who is dying. But, 

when the time comes, unless the death is unexpected and quick, there 

are choices to be made. These may not be easy. But planning ahead and 

working with the health care 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. Caring 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 they needed you, you did what you 

could. 

63
Q

Resources

AARP

601 E Street, NW

Washington, DC 20049

888-687-2277 (toll-free)

www.aarp.org

Aging with Dignity

Box 1661

Tallahassee, FL 32302

888-594-7437 (toll-free)

www.agingwithdignity.org

Alzheimer’s Association

225 N. Michigan Avenue, Floor 17

Chicago, IL 60601

800-272-3900 (toll-free)

www.alz.org

American Academy of 

Pain Medicine

4700 W. Lake 

Glenview, IL 60025

847-375-4731

www.painmed.org

American Academy of 

Wound Management

1155 15th Street, NW, Suite 500 

Washington, DC 20005

202-457-8408

www.aawm.org

64

If you are interested in learning more about any of the topics in this booklet, 

here are some other resources for you to explore. Some of these are also listed 

in the To Learn More section found at the end of most chapters.
HELPING WITH COMFORT AND CARE

65

American Bar Association

321 N. Clark Street

Chicago, IL 60610

800-285-2221 (toll-free)

www.abanet.org 

American Geriatrics Society

Foundation for Health in Aging

Empire State Building

350 Fifth Avenue, Suite 801

New York, NY 10118

800-563-4916 (toll-free)

www.healthinaging.org

American Hospice Foundation

2120 L Street, NW, Suite 200

Washington, DC 20037

800-347-1413 (toll-free)

www.americanhospice.org

American Music Therapy 

Association

8455 Colesville Road, Suite 1000

Silver Spring, MD 20910

301-589-3300

www.musictherapy.org

Association for Conflict Resolution

1015 18th Street, NW, Suite 1150

Washington, DC 20036

202-464-9700

www.acrnet.org

Beth Israel Medical Center

Department of Pain Medicine 

and Palliative Care

First Avenue at 16th Street

New York, NY 10003

877-620-9999 (toll-free)

www.stoppain.org 

Caring Connections

(See National Hospice and Palliative 

Care Organization)

Center for Caregiver Training

1320 Divisadero Street

San Francisco, CA 94115

415-563-9286

www.caregiving101.org

Centers for Medicare and 

Medicaid Services

800-633-4227 (toll-free)

www.medicare.gov

Center for Practical Bioethics

Harzfeld Building

1111 Main Street, Suite 500

Kansas City, MO 64105

800-344-3829 (toll-free)

www.practicalbioethics.org

Center to Advance Palliative Care

1255 Fifth Avenue, Suite C-2

New York, NY 10029

212-201-2670

www.getpalliativecare.org

Compassion and Choices

Box 101810

Denver, CO 80250

800-247-7421 (toll-free)

www.compassionandchoices.org
66

Department of Veterans Affairs

Veterans Benefits Administration

Veterans Health Administration

810 Vermont Avenue, NW

Washington, DC 20420

VA benefits:

800-827-1000 (toll-free)

To speak with a health care 

benefits counselor:

877-222-8387 (toll-free)

www.va.gov

Donate Life America

700 North 4th Street

Richmond, VA 23219

804-782-4920

www.shareyourlife.org

Eldercare Locator

800-677-1116 (toll-free)

www.eldercare.gov

Family Caregiver Alliance

180 Montgomery Street, Suite 1100

San Francisco, CA 94104

800-445-8106 (toll-free)

www.caregiver.org

Federal Trade Commission

CRC-240

Washington, DC 20580

877-382-4357 (toll-free)

www.ftc.gov

Growth House

www.growthhouse.org

Hospice and Palliative Nurses 

Association

One Penn Center West, Suite 229

Pittsburgh, PA 15276

412-787-9301

www.hpna.org

Hospice Association of America

228 Seventh Street, SE

Washington, DC 20003

202-546-4759

www.nahc.org/HAA

Hospice Foundation of America

800-854-3402 (toll-free)

www.hospicefoundation.org

www.hospicedirectory.org

Hospice Net

Suite 51

401 Bowling Avenue

Nashville, TN 37205

www.hospicenet.org

Living Bank

Box 6725

Houston, TX 77265

800-528-2971 (toll-free)

www.livingbank.org

National Alliance for 

Hispanic Health

Cuidando con Cariño/

Compassionate Care HelpLine

1501 Sixteenth Street, NW

Washington, DC 20036

877-658-8896 (toll-free)

www.hispanichealth.org

RESOURCES
67

HELPING WITH COMFORT AND CARE

National Cancer Institute

Public Inquiries Office

6116 Executive Boulevard

Room 3036A

Bethesda, MD 20892

800-422-6237 (toll-free)

www.cancer.gov

National Hospice and Palliative 

Care Organization

1700 Diagonal Road, Suite 625

Alexandria, VA 22314

800-658-8898 (toll-free)

www.caringinfo.org

www.nhpco.org

National Institute of Nursing 

Research

31 Center Drive, Rm. 5B-10

Bethesda, MD 20892

866-910-3804 (toll-free)

www.ninr.nih.gov

National Library of Medicine

www.medlineplus.gov

Health Topics

Search for:

“Advance Directives”

“Bereavement”

“End-of-Life Issues”

“Hospice Care”

“Organ Donation”

“Pain”

Palliative Care Policy Center

www.medicaring.org

Robert Wood Johnson Foundation

Box 2316

College Road East and Route 1

Princeton, NJ 08543

877-843-7953 (toll-free)

www.lastacts.org

Society of Critical Care Medicine

500 Midway Drive

Mt. Prospect, IL 60056

847-827-6869

www.sccm.org

Visiting Nurse Associations 

of America

99 Summer Street, Suite 1700

Boston, MA 02110

617-737-3200

www.vnaa.org

Well Spouse Association

63 West Main Street, Suite H

Freehold, NJ 07728

800-838-0879 (toll-free)

www.wellspouse.org
68

The National Institute on Aging (NIA) is part of the nation’s principal 

medical research agency, the National Institutes of Health. NIA promotes 

healthy aging by conducting and supporting biomedical, social, and 

behavioral research and public education.

To learn more about Alzheimer’s disease, contact NIA’s ADEAR Center at:

Alzheimer’s Disease Education and Referral (ADEAR) Center

Box 8250

Silver Spring, MD 20907-8250

800-438-4380 (toll-free)

www.nia.nih.gov/alzheimers

For more information on health and aging, contact:

National Institute on Aging Information Center

Box 8057

Gaithersburg, MD 20898-8057

800-222-2225 (toll-free)

800-222-4225 (TTY/toll-free)

www.nia.nih.gov

www.nia.nih.gov/Espanol

To sign up for regular email alerts about new publications 

and other information from the NIA, go to 

www.nia.nih.gov/HealthInformation. 

Visit NIHSeniorHealth (www.nihseniorhealth.gov), a senior-friendly 

website from the National Institute on Aging and the National Library of 

Medicine. This website has health information for older adults. Special 

features make it simple to use. For example, you can click on a button 

to have the text read out loud or to make the type larger.

RESOURCES
Send comments, suggestions, or ideas to:

Freddi Karp, Editor

Office of Communications and Public Liaison

National Institute on Aging

Building 31, Room 5C27

Bethesda, MD 20892

Writer: Karin Kolsky, Office of Communications and Public Liaison, National Institute on Aging

Designer: Lena Markley, Levine and Associates, Inc., Washington, DC

 Photos: Cover and pages 2, 17, 31, 47, 62—Pam Soorenko, Photogroup, Silver Spring, MD

Page 69—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

NIH Publication No. 08-6036 u January 2008