​I’m writing this article as a health psychologist and healthcare consultant with experience in providing co-located care in medical settings. Understanding and navigating your care system is important to limit confusion, frustration/anger, and barriers to care. I hope this information validates and normalizes the patient and caregiver experience in the healthcare system. This is an important step prior to identifying ways to address systemic concerns. 

Understand the Process and Identify and Communicate What You Expect From Your Team

It is essential to have an understanding of your healthcare system and staff roles when living with pain, gastrointestinal issues, and/or other chronic diseases. Research (1, 2) and personal clinical experience characterize traditional health care as one where the doctor is the expert and principal caregiver who diagnoses the patient, provides treatment recommendations and referrals, prescribes medication, and gives emotional support. In the traditional medical approach, the patient is often in a passive role of receiving a diagnosis, treatment information, and prescriptions. “You say, I do.”

A self-management approach to treatment of chronic illness changes the role of both the healthcare provider and the patient. When the patient (and/or patient advocate/caregiver) take a self-management approach, they can focus on:

• Skill building (e.g. specific instructions and coaching on lifestyle changes)
• Problem solving (e.g. how to take new medications during the day to minimize side effects)
• Decision making (e.g. the pros and cons of getting surgery)
• Resource use (within the health care system, local community, social network)
• Forming partnership with healthcare provider
• Identify personal plans/goals and take action  

in addition to information of diagnosis and treatment options. In the self-management approach, the healthcare provider is viewed as a collaborator & health consultant, providing information, medication (if desired by patient), and other desired/needed information for problems identified the patient. There is usually a care coordinator (or there should be!) for the treatment team. This could be the general practitioner, internist, or specialty provider, especially if you have complex health concerns. As a patient, you can clarify what to expect and need from individual providers and the team communication. For example, I ask my patients if they want me to discuss their recent concerns with their doctor. I do believe there is a shift in current healthcare practice towards empowering the patient and encouraging lifestyle changes and self-management approaches. Unfortunately, the healthcare system and providers have limitations and there can be challenges to supporting a self-management approach to care. I review some of these challenges here. In the self-management approach, you can prepare yourself for medical appointments in advance by prioritizing the topics and setting your expectations for how time is spent during the visit. When the patient-provider communication allows you to identify and address your specific issues, you will learn to manage your symptoms more effectively. This approach is intended to be personalized and collaborative (i.e. receive information beyond what you could find on the internet).      

I came upon this patient story that I think is important for patients with chronic illness and complex health needs. Lesley (3), a patient with Irritable Bowel Syndrome, diarrhea type (IBS-D) states “I learned it is essential to really advocate for yourself with your doctors. Many times, with the first doctors I saw, I did not feel comfortable asking for more consideration or concern. I felt brushed aside, which carried into my future relationships with doctors and lack of trust that they really care for or about me. If they cannot communicate with me like a human being and be present in the room, I do not want them to be part of my care team. I’d also suggest that during your most important doctor’s appointments, if you cannot have someone else present with you, you request to record the appointment to ensure you understood all their recommendations, medication instructions, and procedure information and to identify something you may have missed or have questions about.”         

If you are interested in working with a clinical and health psychologist to receive tools and strategies for coping with the stress of living with chronic illness or for treatment of disease-related anxiety/depression, contact me for information. Services are provided via telehealth for California residents. See below for more information. 

References:

1. Kennedy AP and Rogers AE. Improving patient involvement in chronic disease management: the views of patients, GPs and specialists on a guidebook for ulcerative colitis. Patient Educ Couns 2002;47(3):257–263.

      Jarrett ME, Barney P, and Heitkemper MM. Self-Management               
      strategies for irritable bowel syndrome. In Irritable Bowel Syndrome
     Diagnosis and Clinical Management, Edited by Emmanuel A, and Quigley     
     EMM, 2013, Hoboken, New Jersey: Wiley-Blackwell.
 
   2.  Pearson ML, Mattke S, Shaw R, Ridgely MS, Wiseman SH. Patient Self-
       Management Support Programs: An Evaluation. Final Contract Report
       (Prepared by RAND Health under Contract No. 282-00-0005). Rockville,
       MD: Agency for Healthcare Research and Quality; November 2007.
       AHRQ Publication No. 08-0011.                        
      https://www.ahrq.gov/sites/default/files/publications/files/ptmgmt.pdf 

   3. Drossman DA, and Ruddy J. (2022). Gut Feelings: The patient’s story
       personal accounts of the illness journey. Chapel Hill, NC: Drossmancare. 

Dr. Melissa Soo Hoo is a licensed clinical and health psychologist providing telehealth services to adults living in California. She specializes in work with mind-body and psychological concerns related to chronic illness, including digestive diseases and chronic pain conditions. You are invited to request a free 15 minute consultation call to see if therapy with Dr. Soo Hoo is the next step for you. Click here for information.