While cancer survival has improved dramatically over the past few decades, a diagnosis of cancer often raises, for the first time, the prospect of a premature death. In our culture, we have been reluctant to discuss death or plan for it. Our technological progress, medical training, and progressive health care mindset seek to save lives at almost any cost. Neither doctor nor patient nor family and friends feel comfortable raising the issue of dying. Consequently, when death appears to be an inevitable outcome of cancer that is no longer responding to active treatment, we often fail to provide a good way to help ourselves, or someone we love, die well.
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).
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. The Conversation Project is an organization dedicated to helping people have difficult conversations with their loved ones about end-of-life decisions. They offer a free ‘Conversation Starter Kit’ to aid in preparation for having such a conversation.
The Ellen L. Stovall Award for Innovation in Patient-Centered Cancer Care is a unique opportunity for patients and survivors to recognize pioneers who are transforming the cancer care system.
The NCCS Cancer Policy & Advocacy Team (CPAT) is a program for survivors and caregivers to learn about pressing policy issues that affect quality cancer care in order to be engaged as advocates in public policy around the needs of cancer survivors.
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NCCS represents the millions of Americans who share a common experience – the survivorship experience – living with, through and beyond a cancer diagnosis.
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