End of Life Health Care: What it takes. A LearnWell Course

When a patient's health care team determines that the cancer can no longer be controlled, medical testing and cancer treatment often stop. But the patient's care continues. The care focuses on making the patient comfortable. The patient receives medications and treatments to control pain and other symptoms, such as constipation, nausea, and shortness of breath. Some patients remain at home during this time, while others enter a hospital or other facility. Either way, services are available to help patients and their families with the medical, psychological, and spiritual issues surrounding dying. A hospice often provides such services.

The time at the end of life is different for each person. Each individual has unique needs for information and support. The patient's and family's questions and concerns about the end of life should be discussed with the health care team as they arise.

The following information can help answer some of the questions that many patients, their family members, and caregivers have about the end of life.

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.

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.
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.
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.
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 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.
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.
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.
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.

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.

Source: http://www.cancer.gov/cancertopics/factsheet/support/advance-directives

Hospice is a concept of care that involves health professionals and volunteers who provide medical, psychological, and spiritual support to terminally ill patients and their loved ones. Hospice stresses quality of life—peace, comfort, and dignity. A principal aim of hospice is to control pain and other symptoms so the patient can remain as alert and comfortable as possible. Hospice services are available to persons who can no longer benefit from curative treatment; the typical hospice patient has a life expectancy of 6 months or less. Hospice programs provide services in various settings: the home, hospice centers, hospitals, or skilled nursing facilities. Patients’ families are also an important focus of hospice care, and services are designed to provide them with the assistance and support they need.

The following resources may offer assistance for people seeking hospice care and information:

For many people, some hospice expenses are paid by health insurance plans (either group policies offered by employers or individual policies). Information about the types of medical costs covered by a particular policy is available from an employee’s personnel office, a hospital or hospice social worker, or an insurance company. Medical costs that are not covered by insurance are sometimes tax deductible.

Medicare, a health insurance program for the elderly or disabled that is administered by the Centers for Medicare & Medicaid Services (CMS) of the Federal Government, provides payment for hospice care. When a patient receives services from a Medicare-certified hospice, Medicare insurance provides substantial coverage, even for some services that would not be covered outside of a hospice program. To find a Medicare-certified hospice program, people can ask their doctor, a state hospice organization, or the state health department. The telephone number for state hospice organizations and health departments can be found in the state government section of a local telephone directory. The Medicare hotline can answer general questions about Medicare benefits and coverage, and can refer people to their regional home health intermediary for information about Medicare-certified hospice programs. The toll-free telephone number is 1–800–MEDICARE (1–800–633–4227); deaf and hard of hearing callers with TTY equipment can call 1–877–486–2048. The booklet Medicare Hospice Benefits is the official publication for Medicare hospice benefits. This booklet, which outlines the type of hospice care that is covered under Medicare and provides detailed information about hospice coverage, is available at http://www.medicare.gov/Publications/Pubs/pdf/02154.pdf on the Internet.

Medicaid, a Federal program that is part of CMS and is administered by each state, is designed for patients who need financial assistance for medical expenses. Information about coverage is available from local state welfare offices, state public health departments, state social services agencies, or the state Medicaid office. Information about specific state locations may also be found at http://cms.hhs.gov/medicaid on the Internet.

In addition, local civic, charitable, or religious organizations may be able to help patients and their families with hospice expenses.

Source: http://www.cancer.gov/cancertopics/factsheet/support/advance-directives

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