Making Treatment Decisions: Resources for Caregivers

Please go to National Coalition for Cancer Survivorship for much more information on breast and other types of cancer.

Making Difficult Treatment Decisions

Treatment decisions by you, the caregiver, may be necessary in the event the person with cancer is not able to make them for him- or herself. The patient and caregivers should discuss this situation, and take steps to assure that the person with cancer receives treatment on his or her own terms. One way that is both legal and effective is for the patient to complete an advance directive to express his or her wishes. This approach makes one's wishes clear — and this can be of great importance to caregivers. There are two components to an advance directive, and a person should have both in place when facing any serious illness.

The living will is a message from the person whose will it is to health care providers in regard to the kind of care that is and is not wanted if the patient can no longer make his or her decisions personally. The topics usually covered in a living will include directives about artificial feeding, use of a respirator if a person cannot breathe on his or her own, and whether or not the patient wishes to have cardiopulmonary resuscitation (CPR) if his or her heart stops. No one must respond to every question in a standardized living will format; if a question is not answered, then the health care provider will make those decisions. Also one can add more information detailing what is and is not wanted, directly on the forms. Many living will standard forms are vague, and so it is up to the person involved to add the details that make it appropriate for his or her care, as is wanted.

A more "user-friendly" version of a living will can be found in a document called Five Wishes, created by Aging with Dignity and legal in most states. This document is clearly written and allows a person to make wishes known in understandable language. To obtain a copy, go to www.agingwithdignity.org and follow the instructions there.

The durable power of attorney for health care designates another person to act as the named individual’s representative in making medical decisions for a person if that person cannot make them. It is simpler than a living will, in that it usually just states that if the named person is unable to make his or her own health care decisions, another person, named in the document, is authorized to do so. This document does not have a list of the kinds of care an individual does and does not want. The person chosen to represent the named individual you choose to have your health care power of attorney should be someone who is trusted and who will honor the wishes of the person giving the power of attorney.

For more detailed information on making wishes known, see Thinking Through Your Wishes on this site.

Other sources of help and information include:

• Family and Medical Leave Act (FMLA) — Passed in 1993, FMLA requires businesses and organizations with 50 or more employees to grant leave without pay for a variety of reasons including caregiving of family members, including parents. If you have been employed at least 12 months by the employer or at least 1,250 hours during the previous 12 months, you are entitled to a total of 12 workweeks of unpaid leave during any one year to care for a family member (parent, spouse, child only), as well as for other reasons, such as the birth of a child, your own health problems or adoption. FMLA may also be applicable to your loved one, once regular sick leave has been exhausted during the course of cancer treatment. Note that the 12 weeks of leave does not have to be taken all at once, but can be used as needed. For more information, see your employer's human resources office and the Department of Labor's website. Also see the extensive and helpful information on the website of the National Partnership for Women and Families.

• For detailed information about cancer survivors' rights as employees, see Your Employment Rights on this site.

• National Family Caregiver Support Program — Enacted in 2001 as part of the Older Americans Act, this program calls for states, working with area agencies on aging, to have basic services such as information services, counseling, and respite care available for family caregivers caring for the elderly and older caregivers caring for young children. Special assistance is provided for people with greatest economic and social needs, and those caring for individuals with mental disabilities. In some instances, these services may be available to caregivers of people with cancer, if other criteria are met. To find out if you may qualify, contact your local Administration on Aging office; look for numbers in the "government" section of the phone book, or ask the hospital social worker for help in contacting these offices.

• The Older Americans Act - helps frail and disabled people 60 or older to remain independent. Covers home care aides, escorts, meal delivery, shopping, etc. Contact your local area agency on aging for information and referrals — look under county or city government headings. Or, call the hotline run by the U. S. Administration on Aging at 1-800-677-1116. This helpful referral service is also available online at www.eldercare.gov.

• Medicaid: Medicaid, a joint state-federal program for low-income people, is, like Medicare, coordinated by the Centers for Medicare and Medicaid (CMS). Medicaid coverage varies from state to state, but usually includes some amount of coverage for nursing, aides, equipment and supplies. Get information from your community's welfare office, state department of health, and on the Internet at www.cms.hss.gov/Medicaid.