Staying alive is most people's top priority and oncologists have more and more tools and tactics for keeping patients alive. Yet beyond keeping us alive, there is so much more.
There are certain sentiments I hear repeatedly in the cancer space and during this month's #gyncsm twitter chat, we tackled one of these topics: Care Beyond Medical Care.
In still far too many cases, patients are released from their oncology care with little guidance on navigating the physical, social and emotional waters of life outside their cancer treatment. During the chat, we discussed ways to regain a sense of control, pampering yourself, stress management, dealing with the pressure to appear "happy" and "hopeful," and coping with sadness and depression.
Cindy Finch (@5thstepofcancer), who is a survivor and clinical social worker, was able to join the #gyncsm chat and you can read Cindy's LATimes OpEd piece on this topic here. In it she references the 2007 NIH report Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs, which states "Today, it is not possible to deliver good-quality cancer care without addressing patients' psychosocial health needs." Major cancer centers and certain patient groups, such as LIVESTRONG, have put time and resources into the development of survivorship plans. I wonder, though, how much has changed beyond the major centers.
Patients need access to education about self-care, coping and resilience skills. Patients are seeking a full understanding of how treatment affects fertility and sexuality. Patients need supportive services to handle both short-term and long-term side effects from the cancer and its treatment. Patients are seeking options for connecting with other patients they can identify with and support options for their caregivers. Patients need access and referrals to mental health professionals experienced with cancer patients and information about coping with depression and PTSD. Patients need clinical trial information beyond what is available at their current place of care and to know how important clinical trials can be at every point in the cancer journey. Patients need honest, compassionate information about their risk for recurrence and other cancers. Patients need information on how to advocate for themselves in the healthcare system.
Serving the vast needs of cancer patients beyond the mainline treatments seems more than oncologists alone can possibly provide. It even seems challenging simply to discuss all this during appointments whose main focus is treating the cancer. It is going to take a collaborative approach involving several disciplines and sectors. Cancer patients have long-term psychosocial and physical care needs.
Cancer advocates are going to need to keep pushing that sending people on their way post treatment is not good enough. It's going to take health centers, nonprofits, social good entreprenuers, businesses and patients themselves working together to reach a point where comprehensive, whole-person care is the norm.
If you'd like to join in the #gyncsm monthly discussion, the chat takes place on second Wednesdays at 9 p.m. EST. You can find more information, including tips for those new to Twitter and tweet chats, at gyncsm.blogspot.com.