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Survivorship: Language Matters

Inspire Health Event Calendar March 7, 2013

You may have noticed recently in the popular press that the language being used in the reporting of public health, and in particular cancer, is changing. One article recently published in the Huffington Post last month, The Problem with ‘Fighting’ Cancer, speaks to the importance of language and the intentional (or unintentional) impact it can have on people. The metaphors we use do matter.

Another recent HuffPost article, Cancer Redefined: ‘Survivor’, describes the changes in terminology and metaphors that have been used: from Hero to Patient to Conqueror and now to “Survivor”. The thought is that survivor is “a far more universal term taking into consideration the breadth of the cancer experience while offering no judgment as to the burden or outcome of the disease.”

There is currently no single accepted model of cancer survivorship. The Institute of Medicine’s (IOM) influential 2005 report entitled ‘From Cancer Patient to Cancer Survivor: Lost in Transition’ recommends that each cancer patient receive a survivorship care plan in the period following first diagnosis and treatment and prior to the development of a recurrence of cancer.

A Cancer Care Movement

The point we’d like to make is that things are changing in the public health arena and much can be accomplished simply by widening our perspective. This movement for change in health care is happening worldwide and the interest in new perspectives, like cancer survivorship, is growing.

For example, in the United Kingdom, the national healthcare system created the National Cancer Survivorship Initiative (NCSI) to ensure that “those living with and beyond cancer receive the care and support they need to lead a healthy and active life as much as possible, for as long as possible.” NCSI addresses ‘unmet needs’ of cancer survivors including medical, psychological, social, spiritual, and informational needs.

Closer to home in Alberta, CancerBridges, is connecting health care professionals and patient programs province wide with cancer survivors to deliver evidence-based survivorship care from diagnosis until the end of life. Their survivor network aims to help shape the future of cancer care in Alberta by giving patients a voice within cancer care.

The medical research community is recognizing the change too. In October last year, the Journal of Clinical Oncology dedicated an entire special edition to cancer survivorship, including an article entitled, “Lifestyle Factors in Cancer Survivorship.” And the BC Cancer Agency currently has a Provincial Survivorship Research Program to “improve the well-being of those who are living with and beyond cancer.”

The business community is also starting to understand the importance of expanding options and choices for cancer patients. In August 2012, The Wall Street Journal published an article entitled ‘To Treat the Cancer, Treat the Distress.’ One statement read, “There is a new national push to screen and treat cancer patients for distress – emotional and psychological trauma that interferes with the ability to cope with cancer treatment, but is often overlooked by doctors.”

More good news is that networks such as A Survivorship Action Partnership (ASAP) are being initiated by public groups like Movember and directing some funding into patient programs aimed at providing information and resources on a variety of topics, such as physical, mental and spiritual wellbeing to help improve the lives of prostate cancer survivors, their partners, caregivers and family members. ASAP recognizes that survivorship care occurs at all points along the cancer care continuum and have adapted the IOM model of survivorship care to reflect this definition. InspireHealth is pleased to be part of this initiative and to bring our experience to the table. We hope that other such initiatives with a broader mandate for all cancer diagnoses will soon follow suit.

From Survivorship to Thrivership

In addition to the accepted term survivorship, we at InspireHealth have added to our vocabulary the more optimistic term, thrivership, recognizing that patients with a cancer diagnosis want to not only survive, but thrive. Our programs inform, support and encourage healthy lifestyle changes that aim to enhance quality of life, reduce the risk of cancer recurrence and improve survival. InspireHealth believes that the greatest opportunity for patients to achieve positive results is integrating lifestyle support at the time of diagnosis rather than after conventional treatment has ended.

InspireHealth’s integrative approach honours the value of standard cancer treatment while recognizing the importance of individual choices that support health at the level of mind, body and spirit.

What are your thoughts on survivorship? Join the conversation on Facebook.