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Advance Directives

More than ever before, people with cancer and their families are being asked to take part in decisions about 

end-of-life care. Yet, most people still do not discuss end-of-life care at all, even if they are seriously ill. This 

fact sheet provides patients with an outline for thinking about these issues and some guidelines for discussion 

with their doctors, families, and loved ones. This fact sheet is also designed to help patients understand the 

medical, legal, and personal choices they may face in the future.

1. What rights do patients have regarding their medical treatment?

Patients are entitled to complete information about their illness and how it may affect their lives, and 

they have the right to share or withhold that information from others. People with cancer should also 

be informed about any procedures and treatments that are planned, the benefits and risks, and any 

alternatives that may be available. Patients may be asked to sign an “informed consent” form, which 

includes this information. Before signing such a form, patients should read it carefully and ask the 

doctor any questions they might have.

Patients have the right to make decisions about their own treatment. These decisions may change 

over time. In the face of worsening disease, some patients may want to try every available drug or 

treatment in the hope that something will be effective. Other patients may choose to forgo aggressive 

medical treatment. Many patients turn to family members, friends, or caregivers for advice. But it is 

the patient’s decision how much or how little treatment to have. Sometimes a patient is unable to 

make this decision, due to severe illness or a change in mental condition. That is why it is important 

for people with cancer to make their wishes known in advance.

2. What is end-of-life care? What are advance directives?

End-of-life care is a general term that refers to the medical and psychosocial care given in the 

advanced or terminal stages of illness. Advance directives are the legal documents, such as the living 

will, durable power of attorney and health care proxy, which allow people to convey their decisions 

about end-of-life care ahead of time. Advance directives provide a way for patients to communicate 

their wishes to family, friends, and health care professionals and to avoid confusion later on, should 

they become unable to do so. Ideally, the process of discussing and writing advance directives should 

be ongoing, rather than a single event. Advance directives can be modified as a patient’s situation 

changes. Even after advance directives have been signed, patients can change their minds at any 

time.

3. Why are advance directives important?

Complex choices about end-of-life care are difficult even when people are well. If a person is seriously 

ill, these decisions can seem overwhelming. But patients should keep in mind that avoiding these 

decisions when they are well will only place a heavier burden on them and their loved ones later on. 

Communicating wishes about end-of-life care will ensure that people with cancer face the end of their 

lives with dignity and with the same values by which they have lived.

4. Why is it important to write a will?

A will is important so that patients can give instructions about distribution of their money and property 

when they die. Patients can name a trusted family member, friend, or professional to handle their 

personal affairs (also known as an Executor). It is advisable to seek the expert advice of a lawyer in 

drawing up a will so that the decisions made about taxes, beneficiaries, and asset distribution will be 
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legally binding. This process can relieve a patient’s family and friends of an enormous burden in case of 

disputes or questions about allocation of the patient’s assets.

5. What is a living will?

A living will is a set of instructions documenting a person’s wishes about medical care intended to sustain life. 

It is used if a patient becomes terminally ill, incapacitated, or unable to communicate or make decisions. 

Everyone has the right to accept or refuse medical care. A living will protects the patient’s rights and removes 

the burden for making decisions from family, friends, and physicians.

There are many types of life-sustaining care that should be taken into consideration when drafting a living will. 

These include:

• the use of life-sustaining equipment (dialysis machines, ventilators, and respirators);

• “do not resuscitate” orders; that is, instructions not to use CPR if breathing or heartbeat stops;

• artificial hydration and nutrition (tube feeding);

• withholding of food and fluids;

• palliative/comfort care; and

• organ and tissue donation.

It is also important to understand that a decision not to receive “aggressive medical treatment” is not the 

same as withholding all medical care. A patient can still receive antibiotics, nutrition, pain medication, 

radiation therapy, and other interventions when the goal of treatment becomes comfort rather than cure. This 

is called palliative care, and its primary focus is helping the patient remain as comfortable as possible. 

Patients can change their minds and ask to resume more aggressive treatment. If the type of treatment a 

patient would like to receive changes, however, it is important to be aware that such a decision may raise 

insurance issues that will need to be explored with the patient’s health care plan. Any changes in the type of 

treatment a patient wants to receive should be reflected in the patient’s living will.

Once a living will has been drawn up, patients may want to talk about their decisions with the people who 

matter most to them, explaining the values underlying their decisions. Most states require that the document 

be witnessed. Then it is advisable to make copies of the document, place the original in a safe, accessible 

place, and give copies to the patient’s doctor, hospital, and next of kin. Patients may also want to consider 

keeping a card in their wallet declaring that they have a living will and where it can be found.

6. What is a health care proxy and durable power of attorney for health care?

A health care proxy is an agent (a person) appointed to make a patient’s medical decisions if the patient is 

unable to do so. Generally, people assign someone they know well and trust to represent their preferences 

when they can no longer do so. Patients should be sure to ask this person for agreement to act as their 

agent. An agent may have to exercise judgment in the event of a medical decision for which the patient’s 

wishes are not known.

The durable power of attorney for health care is the legal document that names a patient’s health care proxy. 

Once written, it should be signed, dated, witnessed, notarized, copied, distributed, and incorporated into the 

patient’s medical record.

Patients may also want to appoint someone to manage their financial affairs if they cannot. This is called a 

durable power of attorney for finances, and is a separate legal document from the durable power of attorney 

for health care. Patients may choose the same person or someone different from their health care proxy to 

act as their agent in financial matters.

7. Where can people with cancer get assistance with their advance directives?

If patients need help making the decisions discussed in this fact sheet, they should not hesitate to call upon 

family, friends, and other loved ones. Patients can also call an organization such as Cancer Care, Inc., for 

help with this process. Cancer Care, Inc., provides free, professional assistance to people with any type of

cancer, at any stage of illness, and to their families. Patients and their families may write to Cancer Care, 

Inc., 275 Seventh Avenue, New York, NY 10001; call 1–800–813–HOPE (1–800–813–4673); or visit their Web 

site at http://www.cancercare.org on the Internet.
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Although a lawyer is not needed to complete advance directives, it is important to be aware that each state 

has its own laws for creating advance directives. Because these laws can vary in important details, special 

care should be taken to adhere to the laws of the state a patient lives in or is treated in. It is possible that a 

living will or durable power of attorney signed in one state may not be recognized in another. Appropriate 

forms can be obtained from health care providers, legal offices, Offices on Aging, and state health 

departments.

This fact sheet was adapted with permission from Cancer Care, Inc., a nonprofit social service agency whose mission is to help 

people with cancer and their families. Cancer Care’s toll-free telephone number is 1–800–813–HOPE. The National Cancer Institute 

and Cancer Care, Inc., are in partnership to increase awareness of the psychosocial issues faced by cancer patients and to provide 

resources to cancer patients and their families.

# # #

Related NCI materials and Web pages:

• National Cancer Institute Fact Sheet 8.15, End-of-Life Care: Questions and Answers

(http://www.cancer.gov/cancertopics/factsheet/Support/end-of-life-care) 

• National Cancer Institute Fact Sheet 8.17, Palliative Care in Cancer

(http://www.cancer.gov/cancertopics/factsheet/support/palliative-care)

• Coping With Advanced Cancer

(http://www.cancer.gov/cancertopics/advancedcancer)

• Coping With Cancer: Supportive and Palliative Care Home Page 

• (http://www.cancer.gov/cancertopics/coping) 

• When Someone You Love Has Advanced Cancer: Support for Caregivers

(http://www.cancer.gov/cancertopics/when-someone-you-love-has-advanced-cancer) 

• When Someone You Love Is Being Treated for Cancer

(http://www.cancer.gov/cancertopics/when-someone-you-love-is-treated)

How can we help?

We offer comprehensive research-based information for patients and their families, health professionals, cancer 

researchers, advocates, and the public.

• Call NCI’s Cancer Information Service at 1–800–4–CANCER (1–800–422–6237)

• Visit us at http://www.cancer.gov or http://www.cancer.gov/espanol

• Chat using LiveHelp, NCI’s instant messaging service, at http://www.cancer.gov/livehelp

• E-mail us at cancergovstaff@mail.nih.gov

• Order publications at http://www.cancer.gov/publications or by calling 1–800–4–CANCER

• Get help with quitting smoking at 1–877–44U–QUIT (1–877–448–7848)

This fact sheet was reviewed on 3/7/00