You will face many hard decisions as you near the end of
life. Those decisions will include what kind of care you'd like to receive,
where you'd like to receive care, and who will make decisions about your care
should you not be able to make decisions yourself.
You may hear these terms:
No one knows
when his or her time may come. So it's a good idea to spend some time planning
what you want at the end of life. To be prepared:
One thing to think about is what type of
medical care you want. Some people ask their doctors to do everything possible
to keep them alive. This is called curative treatment.
palliative care, which does not try to cure your
illness. It looks at ways to make you more
comfortable. For example, palliative care may include giving you medicines to
help with pain or with the side effects from treatment. Palliative care team members may also provide physical therapy or help you if you are having problems such as anxiety or loss of appetite from chemotherapy.
have both types of treatment. You can get palliative care to help keep you
comfortable, and you can take medicines or other treatments that might cure
A time may come when you decide to stop curative treatment if it is very clear that your illness
can't be cured. You will still see your
doctor and get excellent care. And if your condition changes, you can start
curative treatment again. But if your illness is expected to get worse, you may want to plan ahead for that time by talking with your doctor. He or she will be the one to refer you for hospice care.
Hospice care is for people who are close to the end of life and are not likely to live for more than 6 months.
to think about is where you'd like to receive care. Some people would rather be cared for in a
hospital. Others choose to be cared for at home or in a nursing home.
If you have only a few months left, you may choose to receive care
Hospice services are provided by a team of people that
includes doctors, nurses, and volunteers. The team gives palliative care and
emotional and spiritual support to people near the end of life and to their
families. It may offer practical support like running errands or fixing
meals. You can get hospice care in your home or in a hospice center, hospital,
or nursing home.
The costs are usually covered by Medicare, Medicaid, or private insurance. If you don't have any coverage, a hospice will probably work with you and your family to make sure you can receive their services.
find out that you have a life-threatening disease or condition, talk with your
doctor about the kind of medical care you'd like to receive. Ask a lot of
questions about your illness and the treatments that are available. It can be
helpful to have a friend or family member go to your appointments with you.
When you have decided whether you want palliative care or
curative treatment or both, tell your doctor. Also, share your advance
directive with your doctor.
It can be hard to talk with your loved ones about death. But it is important to discuss your choices while you can speak for yourself.
Planning ahead will help you and your loved ones make hard decisions when the
Even though it might be awkward or uncomfortable, look
for chances to talk about your end-of-life choices. For example, you could
bring up the subject while you are making out your will. Or you could talk with
loved ones after a visit to the doctor. Family gatherings are another place to
make time to discuss your plans with loved ones.
decide and whenever you decide to talk with loved ones, be sure to put your
wishes in writing. You can always change your mind if your condition or your
Health Tools help you make wise health decisions or take action to improve your health.
Learning about end-of-life care:
Many important decisions can be
made about the care you want to receive at the end of life while you are active
and able to communicate your wishes. By making arrangements in advance,
valuable time can be used to spend time with loved ones.
advance directive, which documents your health care
preferences, you can help ensure your wishes will be respected if you become
unable to communicate for yourself.
An advance directive can
always be changed as your personal needs and goals change. Advance directives
For more information on choosing a health care agent and
writing an advance directive, see:
Organ donation is another important
decision to consider at the end of life. Many people need organ transplants
because of medical conditions such as kidney failure,
cornea disease, or
heart failure. After your death, you may be able to
donate certain organs depending on their condition. Talk to your doctor about
whether your illness allows you to be an organ donor.
choose to donate, your organs may be distributed to one or more people, based
on blood and tissue type, the severity of the recipient's medical condition,
how long the recipient has been waiting, and geographical location.
If you are interested in donating, you can indicate this on an organ
donor card, a witnessed document that states your desire to donate your organs.
On this card, you can specify which organs you wish to donate, or you can
choose to donate any organ that is needed at the time of your death. Many
states allow people to designate on their driver's licenses their wishes
regarding organ donation.
People under the age of 18 must have a
parent's or guardian's consent to donate organs.
Even if you
complete a donor card or indicate your wishes on your driver's license, it is
important to discuss your decision with your family. After your death, your
family may be asked to give consent prior to donating your organs. For this
reason, it is important to involve your family.
will not disfigure your body, nor will it interfere with your funeral,
including plans for an open casket funeral. You and your family will not be
responsible for the costs associated with organ donation. Those costs are paid
by the person who receives the organ.
As you make end-of-life decisions,
an attorney can advise you on how best to organize your estate so your family
can handle your affairs after your death. Also, a financial planner or social
worker may be available in your community or through a local hospital or
hospice program. If your finances are limited, some attorneys and accountants
offer services at a reduced rate or at no cost (pro bono).
planning may include:
As soon as you are diagnosed with a serious illness, you may benefit from palliative care to relieve pain and maintain comfort. For more information, see the topic
When you are diagnosed
with a life-threatening illness, it can be difficult to know how long you can expect to live. Talk with your doctor and your loved ones about when to start hospice. Many people do not start hospice until the last few weeks of life. Starting hospice sooner may help you and your family. For more information on this kind of care, see the topic Hospice Care.
Several factors may
impact your decision about the kind of care you want, including:
For more information on making the decision to stop
curative treatments, see:
When you are diagnosed with
a terminal disease or condition, it is important to communicate your
preferences and concerns clearly with your doctor. Likewise, you should expect
your doctor to communicate openly and sensitively with you and your loved ones.
Your doctor can provide information, answer questions, and advise you. But the
decisions are yours.
To get the most out of an appointment with your doctor:
Important questions to ask your doctor include:
Prepare for your appointments
by writing down your questions and concerns and taking this paper to your
appointment. This will help you remember to address the important issues.
As your illness progresses, you may become too ill to continue seeing
your doctor at a clinic or to talk on the telephone. If you wish to be at home
as you die, it is helpful to designate only one family member or friend to
communicate with your doctor. Choosing one reliable person to relay messages
will help avoid the confusion caused by several people trying to communicate
with your doctor.
Discuss with your loved ones and doctor how you feel about life-sustaining
Tough choices include whether you want cardiopulmonary
resuscitation (CPR) performed on you if your heart stops. If you stop
breathing, a ventilator or respirator may be used to mechanically breathe for
you. Although mechanical ventilation can prolong your life, your remaining days
may be spent in the intensive care unit of a hospital connected to life-support
equipment. You may not be fully alert and may not be able to speak.
Talk to your doctor about your illness, specific treatment options, and
chances for recovery. Your family is a key part of this process. Discuss your
options with them and clearly state your wishes. Some people who are facing
death have strong and definite feelings about CPR, and the decision for or
against life support may be easy. For other people, this decision is extremely
For more information on this decision, see:
important treatment issue to consider is whether you want intravenous, or IV,
lines or feeding tubes to be used if you are no longer able to take food or
fluids by mouth. This is known as artificial hydration and nutrition. An IV is
a needle placed in your vein through which fluids, liquid nutritional
supplements, or medicines can be given. A feeding tube can be either a tube
inserted into the stomach through the nose (nasogastric, or NG, tube) or a tube
surgically inserted through the abdomen into the stomach (gastrostomy or PEG
tube, or g-tube). As with an IV line, liquid nutritional supplements, fluids,
or medicines can be given through a feeding tube. A third form of artificial
hydration, hypodermoclysis, involves the injection of fluids directly into
tissues beneath the skin (subcutaneous).
Changes in your body in
the final weeks of life reduce your need for food and water. You will likely
not be thirsty or hungry. You may feel better without artificial hydration or
Talk to your doctor if you
are considering artificial hydration and nutrition. Making a plan for IV fluids
and feeding tubes early in the course of your illness may be helpful if you are
faced later on with the decision to pursue or forgo these treatments. Remember
to communicate your wishes clearly with your family and your doctor.
Deciding when to stop kidney
dialysis can be a difficult decision for people who have kidney failure. A person with kidney failure needs dialysis or a kidney
transplant to sustain life. Kidney failure often occurs after kidney damage has
been present for 10 years or more. It usually is caused by a chronic disease,
such as chronic renal disease or
diabetes, that slowly damages the kidneys and reduces
their function over time.
Although dialysis sustains life, it is
not a cure for kidney failure. Having
kidney disease means making difficult choices. Many people with kidney failure
live active, productive lives while having regular dialysis treatment. But
others do not feel as healthy and struggle with the complications of
If you have a heart device such as a pacemaker or an implantable cardioverter-defibrillator (ICD), talk to your doctor. You may want to have it turned off if you are terminally ill. Your doctor can explain how your heart device might affect you as you die.
Write down your decision about whether or not you want to have your heart device turned off and add this to your advance directive.
Deciding where you will
receive care as your illness progresses can be challenging, but planning now
for your care can decrease your anxiety later on. Talk to your loved ones about
the type of care you would like to receive at the end of your life. Discuss
their expectations as well as your wishes, care needs, finances, and the needs
of your family. Your choice may change as your illness changes.
study of seriously ill patients in hospitals and their family members showed
that the most important elements of end-of-life care were:1
Several care options are available, including hospice,
home care, nursing home placement, or care from an assisted-living facility. Your choices may be limited by your medical coverage or what you can afford to pay.
Studies show that most people die in a hospital or nursing home.2 If you would prefer to have your final care at home, planning ahead may allow you to do so.
As death nears, you may choose to
receive help and support from
hospice. Hospice care focuses on using
palliative therapies exclusively to manage pain and
other symptoms when there is no cure for your condition and death is
anticipated within the next 6 months. Part of this care is keeping you as
alert and comfortable as possible in a familiar environment, surrounded by your
family and friends. When you choose hospice care, you agree to forego curative
and life-sustaining treatments. But you can change your treatment plan at any
Hospice care is provided by a team of health workers,
including nurses, social workers, volunteers, counselors, and personal care
assistants. Your doctor can continue to direct your care and work closely with
you and the hospice team. Hospice care most often occurs at your home, although
it can be given in a nursing home, a hospital, or a hospice center. If you
remain at home, the hospice team supports your family in their caregiving. And
"family" is not limited to your spouse (or partner) or blood relatives. Friends
from your workplace, church, community, or neighborhood may be considered part
of your family.
Hospice care seeks to relieve physical symptoms
and address your emotional, social, and spiritual needs, as well as the needs
of your loved ones. Hospice offers a chance to address difficult but normal
concerns that you and those you love may have about death and dying, such as
pain, unresolved issues, and caregiving needs. If you choose, the counseling
and support services that hospice provides will offer opportunities to work on
mending important relationships and to explore spiritual issues.
The hospice team can help with
advance directive forms and with legal and financial
affairs. Also, hospice staff can answer questions about treatment and what to
expect during the dying process. The team can also help with
physical needs, such as bathing and pain control.
are a benefit of many private health insurance policies. Check your health plan
for specific information about hospice coverage. Also, if you qualify for
Medicare benefits, hospice services are covered through the
Medicare hospice benefit.
information on choosing hospice, see the topic
You may choose to remain at home as your
illness progresses, especially if you have a large support network of family
and friends who can help with your care. Another factor in making this choice
may be whether you have the financial resources to hire trained caregivers to
help your family with your care. Remaining at home in a familiar environment,
surrounded by loved ones, may be the best care option in these circumstances.
Community services are available to help your family provide care
for you at home. Talk to your doctor about receiving help from
hospice or a nursing agency. Make a list of people
who can help your family with your care, including people from work, church, or
community groups. In many larger communities, private case management practices
are available to help find and coordinate the services you may need in order to
be cared for at home.
You may consider receiving care
in a nursing home if you are unable to remain at home during your illness. A
nursing home also may be the best option if you need more skilled care than can
be provided at home, or if a family member is unable to care for you because he
or she is ill, disabled, or elderly.
choosing a nursing home may help you as you decide
whether nursing home care is the best choice for you.
facilities are a popular alternative to nursing homes for people who can
provide the majority of their own care. Assisted-living facilities generally
offer individual rooms with limited cooking facilities in each unit. Residents
usually meet in a dining room for meals. Housekeeping and laundry services,
social activities, and access to a nurse are typically provided.
Some assisted-living facilities are connected to a nursing home. In these
facilities, you can transfer from the assisted-care facility to the nursing
home when you are no longer able to provide your own care. Get written
information from the assisted-living facility about what is expected if your
condition gets worse and you are no longer able to care for yourself. Many
assisted-living facilities require that the resident move to a nursing home or
hire a personal caregiver if skilled care is needed.
for assisted-living facilities vary from state to state.
If you are dying or are caring for
a dying loved one, you may have questions and concerns about what will happen
physically and emotionally as death approaches. The following information may
help answer some of these questions.
The dying process is as
variable as the birthing process. The exact time of death cannot be predicted,
nor can the exact manner in which a person will die. But people in advanced
stages of a terminal illness experience many similar symptoms as they approach
the end of life, regardless of their illness.
Several physical and
emotional changes occur as death approaches, including:
Dying people may also experience symptoms specific to
their illness. Talk to your doctor about what to expect. Also, if you have
chosen to receive
hospice care, the hospice team is available to answer
any questions you may have about the dying process. The more you and your loved
ones know, the better prepared you will be to cope with what is
Palliative care can help you to feel
relief from physical symptoms related to your illness, such as nausea or
Pain control and symptom control are important parts of managing your illness
and improving the quality of your life.
Whether a person suffers
from physical pain in the days before death often depends on the illness. Some
terminal illnesses, such as bone or pancreatic cancer, are more likely to be
accompanied by physical pain than others.
Pain and other symptoms
can be so feared that a person considers
physician-assisted death. But pain associated with the
dying process can be managed effectively.
Any pain should be reported to your family and your
doctor. Many medicines and alternative methods (such as massage) are available
to treat the pain associated with dying. Do not hesitate to ask for help. Have
a loved one report your pain if your illness prevents you from communicating
with your doctor.
You may want to protect your family from your
suffering. But it is important to tell them if your pain level is not tolerable
so they can tell your doctor right away.
If you and your doctor are not able to control your pain, ask about seeing a pain management specialist. This is a doctor who finds ways to treat pain that won't go away.
Spirituality refers to a person's
sense of meaning and purpose in life. It also refers to a person's relationship
to a higher power or an energy that gives life meaning.
people do not think of spiritual matters often. For others, spirituality is a
part of daily life. Facing the end of your life may cause you to confront your
own spiritual questions and issues. Organized religion provides comfort to many
people as they face death. Others may find solace in exploring nature, through
community involvement, by strengthening existing relationships, or by
developing new relationships. Think about what provides comfort and support to
you. What questions and concerns do you have? Don't hesitate to ask for support
from friends, family, hospice, or spiritual advisers.
The dying process can
be a time for growth. It offers the dying person and his or her family and
friends a time to mend relationships, share memories, and say their good-byes.
If you are a
caregiver, it is important to communicate openly with
your dying loved one. Also, seek support from others and
take care of yourself so you don't become physically and mentally
autopsy is the thorough examination of a body after
death to help determine how and why a person died. Autopsies are not performed
as frequently as they have been in the past, especially when the death is
An autopsy is often not needed to determine the cause
of death when a person dies of a disease or condition that had been diagnosed.
If a diagnosis and cause of death is unclear, some families may wish to have an
autopsy done. This can provide family members with information about diseases
or conditions that they also may be at risk for developing.
members should find out the cost of an autopsy before one is arranged. For more
information, see the topic
a loved one's death is a normal, healthy reaction. It is a gradual process that
helps people begin to accept their loss and to adjust to life without their
loved one. It often takes 2 years or more to go through the most intense
emotions of the grieving process. Although the pain of grief fades over time,
the sense of loss after a loved one's death never completely goes away.
People experience grief physically and emotionally in their own ways.
After a death, it is common for survivors to wonder if their grief is normal.
Shock, denial, anger, and guilt are all common reactions after the death of
someone close. For example, a person may feel angry toward other family
members, a higher being, or even at the person who died. Or survivors may feel
guilty because their loved one had a long illness and they are relieved that
the death finally occurred. These all are normal
reactions to loss.
Survivors need to be patient with themselves,
and they need to seek help and support from others.
Grief counseling may help some people who are having
difficulty with the grieving process.
For more information about
surviving the death of a loved one, see the topic
Grief and Grieving.
Caring Connections, a program of the U.S. National Hospice and Palliative Care Organization (NHPCO), seeks to improve care at the end of life. Caring Connections provides free resources, including educational brochures, advance directives and hospice information, and a toll-free help line for people looking for quality end-of-life information.
Nursing Home Compare is a website with information about every Medicare- and Medicaid-certified nursing home in the country. The site allows you to search for nursing homes by name, city, county, state, or ZIP code. It also allows you to compare the quality of nursing homes using a five-star rating. The site also has information on alternatives to nursing homes, such as home care or assisted living.
The Centers for Medicare and Medicaid Services (CMS) is a
federal agency within the U.S. Department of Health and Human Services. CMS
administers Medicare, Medicaid, and the Children's Health Insurance Program
(CHIP). CMS also has other responsibilities, such as overseeing the health
insurance portability standards, which include the Health Insurance Portability
and Accountability Act of 1996 (HIPAA), and ensuring quality care standards in
long-term care facilities and clinical laboratories.
This organization supports and assists
people who are providing long-term care at home. It also provides education,
research, services, and advocacy.
Resources are available at this website for people who
are caregivers and for those who are personally facing terminal illness, death,
and grief. There are also programs for health professionals who work with
people at the end of life.
From links on this website, you can
locate a hospice and view a list of other organizations. Also, you can read a
hospice and caregiving blog, an e-newsletter, and frequently asked questions.
You can use a link called "Share Your Story" to post your own story for other
website visitors to read.
The National Institute on Aging (NIA), one of the
centers of the U.S. National Institutes of Health, leads a broad scientific
effort to understand the nature of aging and to extend the healthy, active
years of life. The NIA funds research and provides information about health and
research advances to the public and interested groups.
CitationsHeyland DK, et al. (2006). What matters most in end-of-life care: Perceptions of seriously ill patients and their family members. Canadian Medical Association Journal, 174(5): 1–9.Arnold R (2012). Care of dying patients and their families. In L Goldman, A Shafer, eds., Goldman’s Cecil Medicine, 24th ed., pp. 9–15. Philadelphia: Saunders.Other Works ConsultedArnold R (2012). Care of dying patients and their families. In L Goldman, A Shafer, eds., Goldman’s Cecil Medicine, 24th ed., pp. 9–15. Philadelphia: Saunders.Byock I (2004). Four Things That Matter Most: A Book About Living. New York: Free Press.Federal Trade Commission (accessed April 2010). Funerals: Consumer Rights Under the Funeral Rule. Available online: http://www.ftc.gov/bcp/edu/microsites/funerals.Lampert R, et al. (2010). HRS Expert Consensus Statement on the Management of Cardiovascular Implantable Electronic Devices (CIEDs) in patients nearing end of life or requesting withdrawal of therapy. Heart Rhythm, 7(7): 1008–1026.McGolderick M, Walsh F (2011). Death, loss, and the family life cycle. In M McGoldrick et al., eds., The Expanded Family Life Cycle: Individual, Family, and Social Perspectives, 4th ed. Boston: Allyn and Bacon.Serwint JR (2011). Loss, separation, and bereavement. In RM Kliegman et al., eds., Nelson Textbook of Pediatrics, 19th ed., Online chapter 16. Philadelphia: Elsevier Saunders. Available online: http://www.expertconsult.com.Stiles M, Walsh K (2011). Care of the elderly patient. In RE Rakel, DP Rakel, eds., Textbook of Family Medicine, 8th ed., p. 52. Philadelphia: Saunders.
July 6, 2012
Anne C. Poinier, MD - Internal Medicine & Shelly R. Garone, MD, FACP - Palliative Medicine
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