Similar to survivorship, care plans also present a conundrum for oncology practitioners. In my post, Cancer Survivorship – A Blessing and a Challenge in Healthcare, I addressed the increasing number of cancer survivors at risk of falling through the healthcare system cracks when they complete treatment, enter into long-term management of the disease, or struggle with the collateral damage of a diagnosis at any point on the cancer continuum.
In spite of the call for additional survivorship resources, there continues to be a significant gap in what survivors need and what they receive. Not surprisingly, oncology nurses end up on the frontline of adding value to survivorship, often without meaningful resources to do so.
Many have found themselves thrust into the role of survivorship care coordinator and left to their own means to figure out how to:
- Prioritize a multitude of wide-ranging patient needs.
- Take on a leadership role without the benefit of additional leadership and management skills training beyond what was taught in nursing school, and what they’ve picked up along the way through experience.
- Lobby organizations to invest funding in a relatively new specialty area that has far fewer billing codes and reimbursements from insurance than are needed.
- Convince oncology specialists of the importance of survivorship care and get buy-in for patient referrals to services offered.
- Find time to get educated about the vast number of existing resources available outside of the healthcare system for their survivors.
But, perhaps one of the greatest challenges thus far in survivorship is the now mandated Survivorship Care Plan. In September 2014, the Commission on Cancer released mandates surrounding survivorship care plans, which will be rolled out gradually during through 2019.
This call to action is long overdue for survivors. It took over a decade to go from identifying what patients need to not just survive, but to thrive with, through, and beyond cancer.
The conundrum is three-fold
Those who are not treated at an NCI Comprehensive Cancer Treatment Center (something that, in some states, is becoming even more difficult to choose as a patient given that insurers are dropping centers such as MD Anderson from coverage) can be left hoping their treatment facility will act from goodwill and provide care plans without being mandated to do so.
The second conundrum is that even those operating under the mandate are left to design and implement without essential resources. Many oncology nurses have found themselves taking on the burden of designing a care plan from scratch themselves. One nurse I met at an oncology conference broke down in tears as we were discussing care plans. She felt torn between how to find the time in addition to all her other tasks and knowing, as a survivor herself, how beneficial a plan for her patients could be.
Several organizations such as the National Comprehensive Cancer Network and the American Society of Clinical Oncology offer recommendations. But progress and standardization is still moving at a snail’s pace, leaving healthcare professionals in a conundrum.
Finally, very few, if any of the care plans incorporate a whole-life approach. The most basic are one-page treatment summaries with a list of recommended future screenings. Some include preventative lifestyle changes and others trend toward the far end of the spectrum, spewing out pages and pages from the printer filled with some of the most fear-inducing descriptions of every possible thing that could ever go wrong. None of these options create optimal engagement or compliance, nor do they help address the collateral damage of cancer.
Here’s what we know
What we know is that cancer survivorship cannot be solely based on the medical aspects (i.e., side effects, pain management, and sleep disorders). Cancer survivorship, instead, needs to incorporate everything else that affects cancer patients post-treatment. These issues include: financial challenges, fear of cancer recurrence, incorporating exercise and a healthy diet, rejuvenating their relationships, rejoining the workforce, physical energy, body image issues, post-traumatic stress disorder, cognitive and memory changes, concentration impairment, fatigue, and so on. These are the areas missing on the roadmap survivors need to thrive.
Again, this is just a start, just merely scratching the surface on survivorship and starting the conversation. Cancer is dynamic and we need to be dynamic along with it.
What have you experienced in your practice good or bad about survivorship?