NCCS has been actively addressing the issue of this last stage of survivorship. Inevitably, with half of all cancer diagnoses, there will come a time when no treatment options exist or the prognosis for extended survival is poor. Former NCCS President Elizabeth Clark, PhD, has researched and written extensively about grief and bereavement. She is the author of You Have the Right to Be Hopeful. She writes: “Hope is flexible, and it remains open to various possibilities and the necessity to change the desired outcome as the reality changes.”
The advocacy skills of information seeking, communication, problem solving and negotiation take on special importance when making decisions about discontinuing treatment or how and where you wish to die.
Recent studies show that people become more comfortable and appear to die more peacefully when they have planned for their death in advance and communicated these wishes to others.
At the end of life one can still be proactive if provisions have been made in advance. In 1990, the United States Supreme Court ruled that the Constitution gives individuals the right to control their own medical care, however, you must provide “clear and convincing evidence of your desires in the form of an advance health care directive.”
- Educate yourself about end-of-life issues and advanced care planning (medical living wills and durable powers of attorney that vary by state). Contact Choice in Dying at 800-989-WILL (800-989-9455) or www.partnershipforcaring.org for information and state-specific forms. The National Cancer Institute and the American Cancer Society, among others, are updating materials for people with advanced cancer. NCCS also offers a program to address end of life issues in its Cancer Survival Toolbox® program.
- Meet with experts in this type of planning - a peer counselor, hospital social worker, a spiritual or bereavement counselor, or a hospice representative.
- Prepare a will and put your affairs, legal and otherwise, in order.
- Make your wishes known in advance. Choose someone to act as your proxy that will be willing and able to carry out your wishes.