Living Each Day

When dealing with advanced cancer, people may have different personal goals for their care. Some people choose to investigate every medical care option available. Others prefer to focus on the quality of their life, perhaps with treatment to relieve or reduce symptoms, called "palliative care," but without aggressive treatment of their cancer. Still others may choose not to have any further treatment. Such decisions are deeply personal. If you need to make this type of decision, you may want to carefully review all available options. Your feelings and beliefs (and perhaps those of your family or others close to you) are important to consider. To a great extent, personal goals help determine the level of medical care that is appropriate for you, and the setting in which that care will be provided.

There are different types of services available to patients with advanced cancer. In today's changing health care environment, many patients receive their care at home or in a facility such as a clinic or nursing home, rather than in a hospital. Even when hospital care is an option, patients are often able to obtain care at home as a practical and comfortable alternative to hospital care. When you are considering various options, it's helpful to keep in mind that different types of health care service have different goals. Hospice care and home care are two examples.

Hospice Care Hospice care is designed to give supportive care to people in the final phase of a terminal illness and focuses on comfort and a person's quality of life, rather than cure. It is intended for patients who no longer desire or can no longer benefit from treatment aimed at curing their cancer. The goal of hospice is to enable patients to be comfortable and free of pain, so that they live each day as fully as possible. Aggressive methods of pain control may be used. Hospice programs generally are home-based, but they sometimes provide services away from home--in freestanding facilities, in nursing homes, or within hospitals. The philosophy of hospice is to provide support for the patient's emotional, social, and spiritual needs as well as medical symptoms as part of treating the whole person. Hospice caregivers address the needs of the patient and also consider the concerns of those close to the patient.

Hospice programs use a multidisciplinary team approach, including the services of a nurse, doctor, social worker and clergy in providing care. Additional services provided include drugs to control pain and manage other symptoms; physical, occupational, and speech therapy; medical supplies and equipment; medical social services; dietary and other counseling; continuous home care at times of crisis; and bereavement services. Although hospice care does not aim for cure of the terminal illness, it does treat potentially curable conditions such as pneumonia and bladder infections, with brief hospital stays if necessary. Hospice programs also offer respite care workers, people who are usually trained volunteers, who take over the patient's care so that the family or other primary caregivers can leave the house for a few hours. Volunteer care is part of hospice philosophy.

The first hospice program in the United States began serving patients in 1974; today more than 3,000 hospice programs across the country offer comprehensive hospice care. Most insurance plans include hospice as a covered benefit. The National Hospice Organization promotes and monitors the quality of hospice care. For information about hospice concepts, practices, and referral, call the National Hospice Organization at 1-800-658-8898. Your doctor, nurse, or social worker also can provide information on hospice care.

 

Home Care

Unlike hospice programs, home care services may include treatment that targets the cancer itself, not just the symptoms of the cancer. Some people prefer to have cancer treatments and care in the familiar setting of a home rather than a hospital. Home care is provided through various for-profit and nonprofit private agencies, public and private hospitals, and public health departments. Members of the health care team visit the patient at home. Home health care professionals can provide cancer treatment, pain medications, nutritional supplements, physical therapy, and many complex nursing and medical care procedures. Like hospice care, home care also can manage pain and relieve or reduce other symptoms.

Home care can be both rewarding and demanding for the patient and caregivers. It often changes relationships and requires addressing new issues and coping with unfamiliar details of the patient's care. To help prepare for these changes, patients and caregivers are encouraged to ask questions and get as much information as possible from the home care team.

Depending on your own needs and concerns and those of your family or others close to you, the home care team may include many or all or of the following professionals: nurses or nurse practitioners, social workers, dietitians, physical therapists, pharmacists, oncologists, radiation therapists, and psychologists or psychiatrists. (Some health team members do not make home visits). In addition, many patients find that they need a home health aide to help with bathing, personal care, or preparation of meals. Your primary care physician will remain in close contact with the team and monitor your care through other team members, phone calls, and office visits.

Most insurance plans cover brief home visits from a nurse and some cover having a home health aide several times a week. Although more frequent visits and other home care services are available, such as 24-hour care or respite care performed by trained volunteers, these services often are not covered by insurance. As always, you need to know exactly what your insurance plan does and does not cover. If you have questions about your insurance coverage, speak to a member of your health care team.

 

Some Benefits of Hospice and Home Care

Hospice caregivers and home care professionals can help you understand and work through some of the difficult emotional issues that you and your family or others close to you may be experiencing. In this situation, the social worker is an important team member who provides emotional support, assists in planning hospice or home care, and eases the transition between types of care. From the patient's point of view, an advantage to home-based medical services is that family members and friends can be with you and help with your care.

As one woman who cared for her mother at home said:

"The times we all were together with Mom, the rest of the family usually sat and talked with her, while I attended to her personal care or coaxed her to eat. [During those times], we quietly seemed to draw strength from each other just by being together."

 

Insurance Issues

When you are considering different health care services, be sure to check your insurance plan. Insurance coverage may differ depending on the type of care available and its purpose (e.g., comfort versus aggressive treatment). When you call for information about your plan's coverage, it's a good idea to ask for written confirmation of any information you receive by phone. You also may wish to discuss specific options, such as hospice care and home health care, with your nurse, doctor, social worker, or clergy, as well as your insurance company.

 

Making Treatment Decisions

It is your right to make decisions about your treatment. It is also important for you and those around you to realize that these decisions may change over time. Family, friends, and caregivers may find it hard to accept, but for some patients, trying to cure their cancer is no longer the goal. Quality of life becomes more important. Other patients may want to try every available drug or treatment in the hope that something will be effective. Either way, it is up to you. Many patients turn to family members, friends, or caregivers for advice. But the decision about how much or how little treatment for you to have is yours. Sometimes a patient is unable to make this decision, due to severe illness or change in mental condition. That is why it is important to make your wishes known in advance.

Even though the decisions are yours to make, your family or those close to you should not be left out. Families and loved ones are often the most important source of support for patients at this time. Patients are encouraged to establish a durable power of attorney and a living will so that their wishes are known by family members and the health care team.

Refusal of treatment does not necessarily mean immediate decline and death; however, a decision to refuse treatment should be based on your feelings about life, death, and the benefits and side effects of treatment. If you decide to stop treatment, you can still receive pain medication and treatments to reduce the symptoms of your disease. This is called palliative care, and its primary focus is helping you remain as comfortable as possible. Remember: You can change your mind and ask to resume more aggressive treatment. If you do, however, be aware that such a decision may raise insurance issues that you will need to explore with your health care plan.

Your doctors will, almost certainly, offer information and advice to help you decide whether or when to stop treatment. Many religious groups have issued statements about the decision to end treatment. You may want to explore the position that your religious group takes on this issue. Contact a member of the clergy or other counselor if you would like more information. In the end, you are the only one who can decide what is best for you.

 

Patients' Rights

You have other rights, too. You are entitled to complete information about your illness and how it may impact on your life, and you have the right to share or withhold that information from others. You also should be informed about any procedures and treatments that are planned, the benefits and risks, and any alternative treatments that may be available. You may be asked to sign an "informed consent" form, which includes this information. Before you sign such a form, read it carefully and ask your doctor any questions you might have.

 

The Patient Self-Determination Act

A Federal law, the Patient Self-Determination Act (PSDA), requires all medical care facilities receiving Medicare and Medicaid payments to inform patients of their rights and choices in making decisions about the type and extent of their medical care. The PSDA also requires medical care facilities to give patients information about living wills and power of attorney, which are described below. For more information about the PSDA, contact any hospital or medical care facility in your area.

 

Advance Directives: The Living Will and Durable Power of Attorney for Health Care

All states allow people to delegate some medical decision-making rights through "advance directives," but state laws differ considerably. The two forms of advance directives are a living will and a durable power of attorney for health care. A living will is a legal document, which has been properly witnessed by an authority (notary), that allows you to state, in writing, that you do not wish to be kept alive by artificial means or heroic measures. It is a recognized statement of your right to refuse treatment and has been upheld in court. If you decide to prepare a living will, be sure to talk with your doctor, nurse, or lawyer to identify and define terms that may be important to your future medical care, such as "artificial means," "heroic measures," and "code status." You also may want to consider creating a durable power of attorney as a health care proxy (that is, a person who will stand in your place to make medical decisions). This legal document allows you to appoint someone who can make decisions for you about your medical care if you can no longer do so. Choose a person who knows how you feel about specific treatments and who is familiar with any religious considerations that need to be taken into account. And make sure that the term "durable" appears in the power of attorney document you prepare. (A power of attorney can also delegate authority for financial and property management.)

 

How To Find Out About Your State's Laws

Each state has its own laws concerning living wills and durable powers of attorney, and these laws can vary in important details. It is possible that a living will or power of attorney signed in one state may not be recognized in another. You need to be aware of this possibility if you move to another state or enter a hospital in a state other than the one in which you live.

Call Choices in Dying, Inc., a non-profit educational organization, at 1-800-989-WILL to learn how to obtain a copy of the living will used in your state and to learn more about a durable power of attorney for health care (health care proxy). There is a small fee for obtaining the document. You also can contact your state health department for this information.

If you sign a living will or a durable power of attorney, tell everyone close to you that you have these documents and give them copies. Your health care team and lawyer, if you have one, also should be informed and given copies. This information will help ensure that your wishes are carried out.

 

Planning for Your Family

Careful planning reduces the financial, legal, and emotional difficulties your family and friends face after your death. Though it is difficult, discussing practical matters now, such as wills and debts, can eliminate many problems later. Your early decisions also help relieve unspoken family worries. Advice from professional advisers, including lawyers, clergy, social workers, and insurance company representatives, can help you make these important decisions. You may want to help your family plan a funeral or memorial service that has your personal and special touch. Talk with your family and clergy about how you would like to be honored and remembered. Your choice of music, readings, and participants will speak your personal message to those gathered to remember you. You can help your family by organizing records, documents, and instructions they will need. If you cannot gather all of these items, make a list of where they are located. The papers should be kept in a fireproof box or with your lawyer. If they are kept in your safety deposit box, be sure a family member or friend has access to the box so that papers can be removed when needed. Although the original documents must be used for any legal purposes, you may want to make copies for family members. The forms at the end of this brochure can serve as guides for collecting your records.

We hope this section has been helpful to you and those close to you. Our intention has been to give you some practical information and to encourage discussion with family and friends.

Open communication offers a chance to learn one of life's most important lessons.

As one cancer patient said:

"We can choose to wait for death, or we can choose to live until we die. Knowing that death is in the near future is no reason to give up on the life we have today." We hope that this section will help you face this time in your life. Try to remember that even when there seems to be little hope, there are ways to fight feelings of hopelessness and to acknowledge the good things around you.

Try to keep in mind that survival statistics are just numbers. They are no guarantee that you will die at a certain time. In fact, the numbers that should mean the most to you — and perhaps to all of us at any time of life — are those that measure the good days, the comfortable nights, and the hours of happiness and joy, however you find them.

 

National Cancer Institute Information Resources

You may want more information for yourself, your family, and your doctor. The following National Cancer Institute (NCI) services are available to help you.

 

Telephone

Cancer Information Service (CIS) Provides accurate, up-to-date information on cancer to patients and their families, health professionals, and the general public. Information specialists translate the latest scientific information into understandable language and respond in English, Spanish, or on TTY equipment.

Toll-free: 1-800-4-CANCER (1-800-422-6237) TTY: 1-800-332-8615

 

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