ATLANTIC CITY, NJThe 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."