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You are here: Home1 / Resources2 / Publications3 / Self Advocacy4 / End of Life

End of Life

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.

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  • About
    • Our Mission
    • Our History
    • Our Team
      • Policy Advisors
    • Employment
    • Partnerships
    • Financial Information
  • Policy
    • Quality Cancer Care
    • Access to Care
    • Health Equity
    • Redefining Functional Status (RFS)
    • 2021 State of Cancer Survivorship Survey
    • 2020 State of Cancer Survivorship Survey
    • Cancer Care Planning and Communications Act (CCPCA)
  • Get Involved
    • What is Advocacy?
    • Cancer Policy and Advocacy Team (CPAT)
    • Survivorship Champions
    • Subscribe to NCCS Updates
    • Elevating Survivorship
    • Survivor Stories
    • Cancerversary
    • State-Based Cancer Advocacy
  • Resources
    • COVID-19 Resources for Cancer Survivors
    • Survivorship Checklist
    • Cancer Survival Toolbox
    • Telehealth
    • Publications
      • Talking With Your Doctor
      • Self Advocacy
      • Employment Rights
      • Remaining Hopeful
    • Cancer Convos Podcast
    • Taking Charge of Your Care
    • Care Planning for Cancer Survivors
    • Tools For Care Providers
    • Order Our Resources
  • News
  • Events
    • Ellen L. Stovall Award
      • Nominations
      • Awardees
      • Committees
      • Sponsors
    • Cancer Policy Roundtable (CPR)
      • Spring 2022 CPR
      • Fall 2021 CPR
      • Spring 2021 CPR
      • Fall 2020 CPR
      • Spring 2020 CPR
    • 2021 State of Survivorship Survey Results Briefing
    • Cancer Policy and Advocacy Team (CPAT) Symposium 2021
    • From Shadows to Life: A Biography of the Cancer Survivorship Movement
    • Webinars
  • Contact Us

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Harmar Brereton, MD

Founder
Northeast Regional Cancer Institute

 

“Perhaps one of the most impactful collaborations in Dr. Brereton’s extraordinary career remains his early work and long friendship with Ellen Stovall. Through him, and in turn through the thousands of lives he has touched, Ellen’s work continues, and her mission lives on.”

—Karen M. Saunders
President, Northeast Regional Cancer Institute