Guest Expert: Cathy Muha--Discussing Clinical Trials: Focusing on the Caregiver
Originally posted by: Linda Parreco, AccrnalNet Co-Moderator, on the former AccrualNet site on May 25, 2011.
Please join me in welcoming this month's guest expert, Cathy Muha. Cathy is an NCI colleague and an oncology nurse of many years. And several years ago, she found herself sitting in the oncologist's office...hearing that her husband had a cancer diagnosis. 'Changing places' in the exam room gave Cathy a different perspective on the cancer experience and drew her attention to others in the same role--the partner of the patient. I think that you will appreciate Cathy's insights and the issues she raises about clinical trials conversations. Welcome Cathy!
Cathy Muha's Post:
Let’s switch hats for a moment and sit on the other side of the stethoscope. Let’s say you have just been diagnosed with cancer. You feel scared, helpless, unsure of what lies ahead. You meet with the health care team and talk about the diagnosis and treatment options. But it’s tough to do it alone. Who would you take with you? Who would help you sort through the information, help with decisions, and maybe weigh options for a clinical trial? It probably would be a spouse or partner, a good friend, a loyal colleague – someone with whom you trust with your life.
As a clinical research professional, you see lots of different kinds of people accompanying the patient in your practice area. They are usually involved in the patient’s care and play an influential role in treatment decisions. They come from all walks of life, from all educational backgrounds, and have diverse, and in some cases, passionate opinions about research. Despite all the diversity, these people share one thing in common: they are partners in the care of the patient. The patient has opened up their private world to allow this person in during a time of great vulnerability.
The caregiver holds an important and unique position in every conversation about clinical trials participation. What is the best way to integrate these individuals into the discussion about clinical trials? It has to be done sensitively, appropriately, and meaningfully. We know a lot about managing the cancer experience for the patient and family. We know a lot about communication practices and how to communicate clinical trial options to patients. We also know how to communicate about clinical trials with individuals who are acting independently on behalf of a patient such as in the case of young patients or patients with cognitive disabilities. Yet, there is little research in the area of integrating caregivers in the discussions with patients in decisions about clinical trials, their specific information needs, or their preferences for information about clinical trials.
How do we ensure that these individuals have the information, the time and the resources they need to support the patient in making their treatment decision? Until research is done in this area, we need to rely on our education, clinical experience and good judgment. It’s also helpful to remember that the caregiver already has a preexisting relationship with the patient that includes a level of agreement on decisions. Disagreement and conflicts can certainly complicate decision making and affect treatment choices. The Cancer Communication Assessment Tool for Patients and Families (CCAT-PF) is a tool designed to measure the congruence in patient-caregiver communication and may be useful in this regard.
One important thing you can do, is to make sure that you have a good understanding of how the patient and caregiver prefer to communicate further about clinical trials. Will they both want to follow up and, if so, how? Will they want to meet again in person, over the phone, or do they want to be able to send any questions via email? Has the patient already granted the caregiver special privileges surrounding privacy and confidentiality? These are just some of the important considerations in the management of the ongoing discussion of clinical trials with patients and caregivers.
In your role as clinical researcher, you understand the complexities and challenges of communicating information about clinical trials. Perhaps you’ve also been that special person or caregiver who has gone on that first visit with a loved one and understand what it feels like to be in that position. Being in the health profession, you are probably tapped many times by family members and friends to serve in this capacity. What did you learn about this experience? What resources would help others? What worked for you? What tools and articles can you share with us about how to communicate with both patients and caregivers about clinical trials? Please share your insights and thoughts. I’d welcome a conversation with you.