June 2015 VOL 6 NO 3
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Interview with the Innovators
Impact of Psychosocial Distress on Cancer Care: An Interview with Diane Robinson, PhD
Diane Robinson, PhD
The Journal of Oncology Nursing & Survivorship spoke with Diane Robinson, PhD, at the fifth annual Academy of Oncology Nurse & Patient Navigators (AONN+) conference, held at the Walt Disney World Dolphin Hotel in Orlando, FL, in October 2014. AONN+ drew in more than 500 attendees, and addressed the evolving challenges in program improvement, best practices for navigation, survivorship, and psychosocial care for patients with cancer, as well as personalized medicine.
Q: What are the most pressing issues facing patients with cancer in your program and in the community?
Diane Robinson, PhD: Currently, there are a lot of pressing issues facing patients seeking cancer care in the central Florida community. If I had to choose one issue, I think it would be the financial burden on patients with cancer. There have been many positive changes with the Affordable Care Act (ACA); however, many patients now have lower monthly payments, but with higher deductibles. This means that there is immediate financial stress at the beginning of treatment. Some patients still do not have adequate insurance, especially the indigent population. When they arrive at the cancer center for care, they have to face the additional stress of figuring out how they are going to pay for their cancer treatment, or that centers do not accept the insurance they have.
Q: What are the most pressing issues that oncology nurses and physicians who care for these patients face?
Robinson: Many issues that the physicians and nurses are facing have existed for a long time, but are now being amplified. For example, compassion fatigue is something we have examined for many years, but the recent demands on our clinical teams that have come with the changes in healthcare and accreditation mean that compassion fatigue is increasing. There is more paperwork and less time available for face-to-face meetings with patients.
In addition, with the electronic revolution and the need for instant gratification, patients often look for medical information online and can become misinformed. They then come in for a visit and they have a lot more questions than our clinicians are used to being asked. It is a more demanding environment and an ongoing struggle, because physicians and nurses have so many responsibilities. We are asking them to do more, and now patients are asking them to do more too. This creates a tremendous amount of stress.
Q: Can you discuss some of the barriers to care within your patient community?
Robinson: One barrier to cancer care we often forget to consider is psychosocial distress. We have excellent physicians, nurses, and clinic teams, using cutting-edge medical technology; however, if patients are internally struggling with life situations and circumstances, they sometimes will not follow through with their treatment plan. This is why taking care of the patient as a whole, not just treating the cancer diagnosis, is the heart of our institutional purpose of “inspiring hope through extraordinary care.”
Q: What is the most pressing need for patients with cancer and their caregivers?
Robinson: The most pressing need for patients with cancer and their caregivers is simply more quality education about the entire cancer journey from finances to support systems and clinical options in their treatment plan. There is such a tremendous amount of information available that patients can become overwhelmed, confused, or misinformed by relying on less-than-accurate Internet claims. All of us—navigators, clinicians, and hospital administrators—need to present accurate and timely information to help our patients navigate their complex, evolving situation so that they can focus on healing. For me, this is why navigators are so crucial.
Q: Does the oncology community provide adequate psychosocial support?
Robinson: With the Commission on Cancer (CoC) new continuum of care standards, hospitals are being held more accountable now for the inadequate psychosocial support that has been evident in the oncology community in the past. Our Cancer Center has viewed psychosocial distress as a significant influence on overall patient wellness for some time. We decided to become one of the first hospitals in the nation to make psychosocial care an opt-out approach, not the usual opt-in. We operate by incorporating the international nonprofit Cancer Support Community within our walls to help overcome some of the past barriers.
Some barriers that patients come across for seeking psychosocial support include finances and transportation logistics. We offer our programs at no cost, and patients can attend before or after their clinic visits. Often, if you ask patients why they do not seek psychosocial support, they will say they do not need it. However, studies show that psychosocial support can be a key component in helping patients navigate the cancer journey more effectively, so their anxiety can decrease and overall outcomes can increase.
Interestingly, when patients come to some of our events, they often express to me that they never realized how much they needed help and support. Therefore, the battle hospitals will ultimately face after incorporating programs to combat psychosocial distress is helping patients accept that they need support.
Q: How has the ACA affected the delivery of social support?
Robinson: The ACA has not truly addressed the mental health issues facing patients with cancer. This is an area that we need to pay more attention to as a nation, and the Institute of Medicine has been stating this for years. Hopefully, as awareness of mental health issues in cancer patients develops, we will find more reimbursements for it in oncology practice.
At the UF Health Cancer Center, Orlando Health, we have provided many different psychosocial support methods that are free of charge for our patients. The ACA has not been a factor in how we deliver our services. We are fortunate to have incredible support from Orlando Health, the Orlando Health Foundation, and our generous donors, including Women Playing For T.I.M.E., to ensure that we have everything that our patients need, at no charge to them.
For patients to gain access to high-quality psychosocial care, hospitals need to get more innovative. We need to form relationships in the community with different charities, and work to connect patients with those services. It is about being a good community partner, reaching out, and perhaps doing things differently from how they have been done in the past.
Q: What would you recommend for oncology institutions starting a navigation program?
Robinson: Starting a navigation program can be intimidating, and it is especially overwhelming with the new healthcare standards from the CoC. We decided the best approach was to take it one small step at a time. We looked at the most demanding clinic areas, and where our highest volume of patients is and started there. The plan was to learn from these clinics and then take those lessons to the next clinic area. As healthcare is changing, incorporating new procedures becomes essential for a hospital to adapt, survive, and offer outstanding patient care.
Q: Which topics do you discuss with your oncology team?
Robinson: Being in charge of the delivery of the CoC standard 3.2 means that I spend a lot of time discussing the importance of paying attention to psychosocial distress in our patients and their families. However, there are interesting variations to this that involve discussing multidisciplinary and innovative approaches to caring for our patients. For example, one of our neuro--oncologists was working on helping recently diagnosed patients with stage IV glioblastoma navigate this very serious diagnosis. We discussed how we can best care for and support these patients through the process, particularly when end-of-life issues emerge more quickly. He had addressed this issue by forming an interesting partnership with one of our local hospices, Cornerstone Hospice, where their palliative care physicians were immediately scheduled to meet with the patients after diagnosis. After reviewing the clinic flow, further discussions with the hospice expanded their role into offering an advance directives class, using the Five Wishes for all our patients with cancer, as well as a bereavement group. Partnerships like this are an impor-tant part of how our organization can offer such comprehensive care.
Q: What do you think navigation will look like in 2020 and beyond?
Robinson: I hope that in 2020 navigation will be such a common role that we no longer need to analyze it, and that it will be incorporated into hospitals and become the new standard of care for all diagnoses. All patients will have someone who is supporting them through their medical issues and connecting them with services in a natural, effortless way, instead of having to stop and reevaluate each step.
Currently, many of our nurse navigators are encountering difficulties with working out how they function within their hospitals. My hope is that by 2020, it will be a beautiful, fluid process, and every patient will have a nurse navigator.
Q: What are some of the lessons you have learned?
Robinson: I have learned that we can have an impact far beyond what we imagined. For example, a social worker had been running a program for our Cancer Support Community, and when she left I had to step back into a clinical role. I was able to see and experience again the impact support groups can have, and it reinvigorated me. That particular program is called “Cancer Transitions,” and it takes our patients through active treatment to posttreatment care.
The hospital becomes a source of comfort for many patients with cancer who need extensive surgery, chemotherapy, or radiation for months or even years. When the oncologist finally tells them they are finished with their treatments, it can be a very unsettling feeling and a time of high anxiety for some.
I was helping such patients step through this difficult time with this wonderful program. When filling out the evaluations at the end of the program, one of the patients wrote that it was a life-changing experience, and I knew from my interactions with her that it truly had transformed her life.
This lesson had an immeasurable impact on me, and reaffirmed all that I knew to be true. Now, I have patients volunteering their time to let other patients know they can get help and do not need to be afraid. It is a great experience for me to watch this unfold, and it is incredibly rewarding.
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