Written By: Linda Reimers- BS, RHIA, CTR
Director of Business Development
I recently attended the Commission on Cancer Surveyors and Consultants training in Chicago. As a CoC-trained consultant, I have attended these sessions for years. My perspective is different now that my sister-in-law was recently diagnosed with breast cancer. She has limited understanding of cancer and ability to make treatment decisions. We experienced her cancer journey side by side with me asking the questions and making the decisions for her. As all cancer registrars would do, I researched and debated the pros and cons of each test, each treatment choice, and each experience with the clinical care team. For the most part, the clinical team appreciated my knowledge and experience and also knew I was quick to expect the very best of care for my sister-in-law.
Nina Miller, MSSW, OSW-C, Cancer Liaison Initiatives Manager presented updates on Standard 3.2, Psychosocial Distress Screening during the training. I was surprised when she quoted 35.1% as the average prevalence rate for cancer patients showing variations of distress*. I wonder how many hospitals can demonstrate 35% of their patients are being referred for psychosocial services and resources. Is this an opportunity for a quality improvement?
Nina also shared that patients are not likely to initiate a conversation with the physician about distress while the physicians often defer to the patients to raise any concerns about distress related topics. This is no surprise to most of us, but so important to remind ourselves. I have heard countless patients state their physician wasn’t asking how they really felt.
I was pleased to see a psychosocial distress tool was being used by my sister-in-law’s clinical team but knew she didn’t understand the questions she was being asked or why she was being asked. I recommend programs developing a screening tool specific to the needs of someone with low health literally. Nina and I spoke about the tool being self-administered or clinician administered. Research has shown a self-administered tool is a more honest reflection of a patient’s distress. From my experience, I believe a combination may be more appropriate when the patient has special needs. My sister-in-law was annoyed when asked to complete the distress tool on EVERY visit we had with a physician. Not understanding the reason for the questions and the frequency of seeing the form eliminated the benefit her answers could have provided.
Defining the pivotal time to offer distress screening, the tool and the method requires a yearly review and discussion with the cancer committee. The decisions made last year are not necessarily the best decisions for the patient care model being used this year. Providing the distress screening tool with each visit is an easier process because it is repetitive and consideration doesn’t have to be made if this is the pivot time. As seen with my sister in law, the distress tool lost its significance because she saw it ALL of the time. From my experience, I do not think screening at every visit is effective. The cancer committee members must be specific to who receives the distress screening and when it is distributed. Not all patients or treatment modalities will fit the same method of distribution. Be specific to each subset of patients and document the discussion and decision within the cancer committee minutes. Nina shared it is important to screen at a pre-determined visit or visits since the clinician will not know when a patient is distressed. The screening tool allows the patient to identify the psychosocial challenges they are facing.
All patients should be given psychosocial services and resources regardless of the measurement of their distress. Only recently did I also recognize the benefits of a caregiver considering their distress level and resources that are available to them. I recommend the cancer committee consider what is available to all patients along with those with moderate or severe distress, as required by Standard 3.2. The documentation of screening, referral or provision of care and follow-up must be documented in the patient medical record to ensure integrated high quality care is being provided. Evaluating a severe distress level without documentation of services being provided is negligence to your patients.
The psychosocial service coordinator for the cancer committee must be prepared for this yearly discussion and decision-making progress. Many of my hospitals have a template for their yearly review to ensure all discussion topics are covered and the yearly decisions are made and documented.
From my experience, distress comes in all sizes and shapes and each must be addressed appropriately by the clinical team.
* Psychooncology. 2001 Jan-Feb;10(1):19-28.
The prevalence of psychological distress by cancer site.
Zabora J1, BrintzenhofeSzoc K, Curbow B, Hooker C, Piantadosi S.
**Photo from http://www.oncologynurseadvisor.com/side-effect-management/distress-assessing-the-effects-of-coping-with-cancer/article/224949/
Another article discussing patient distress during coping with cancer.