Cancer Survivorship Advocates Focus on End of Life Care

ATLANTIC CITY, NJ—The cancer community must address the barriers that prevent the introduction of the language of dying into the survivorship lexicon, said Ellen Stovall, president and CEO of the National Coalition for Cancer Survivorship.

"Putting dying and survivorship under the same banner may be viewed as contradictory," Ms. Stovall said at a conference entitled Cancer Survivorship Throughout the Lifespan: Challenges for the 21st Century.

She noted that many institutions have difficulty using the term "survivor" to define anyone who is less than 5 years post-treatment. "This is in sharp contrast to most cancer advocacy groups that treat survivorship as a dynamic concept beginning with diagnosis and continuing throughout life," she added.

The palliative and hospice care movement has similar challenges dealing with a system of care that is energized around "death" or "cure," but does not efficiently integrate symptom management throughout illness, she said.

Ms. Stovall pointed out that, historically, the range of topics devoted to survivorship "were shrouded in stigma and
focused largely on the biomedical, psychosocial, spiritual, and economic impact of living with cancer, including fear of recurrence, fertility, sexuality, insurability, and long-term and late effects."

Advocates have successfully brought attention to bear on those issues, but the fact remains that at least one half of all those diagnosed with cancer will die, she said. Very slowly, attention is being given to a more expansive notion of survivorship to include adequate palliative care, especially during the dying process.

"An explicit role for cancer survivorship advocates in this process is a logical next step," she said.

Ms. Stovall stressed that the "cancer community knows that excellent end-of-life care is achievable. The oncology community has led other health disciplines in their attention to pain management. It is fitting that the cancer survivorship movement defines and implements an integrative approach to aggressive palliative care throughout the lifespan of people living with and dying from cancer."