Suffering with Chronic GI Symptoms? Here’s How to Make the Most of Your Doctor Visit July 2014

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Patient EducationMost would agree that good communication skills are the cornerstone of an effective patient-provider relationship. In a previous post, I offered tips to help physicians achieve effective relationships with their patients. But patients also share some of the responsibility for developing and nurturing an effective relationship with their doctor, and one of the ways patients can foster a better relationship is by taking steps to make the most out of their doctor visit, especially if they are suffering from chronic GI symptoms, like abdominal pain, diarrhea or constipation.

Last month I gave a presentation at patient education event in Washington, DC, sponsored by the UNC Center for Functional GI and Motility Disorders. My talk, “How to Make the Most of Your Visit to the Doctor,” touched on several important areas related to the doctor-patient relationship and what patients can do to make it more effective. What follows is a summary of that presentation.

Before I offer some suggestions for making the most of your doctor’s visit, it is important to understand the patient mindset and perspective when it comes to talking about their functional GI symptoms and how they impact their quality of life. Often patients dismiss, overlook, forget or are too embarrassed to share and describe all of their symptoms to the doctor or his staff. From my practice experience patients have many concerns that evolve from their experiences with their GI disorder and their health care providers but are reluctant to discuss them. Here are some statements that they will mention to me.

  • “Doctor’s don’t believe me”
  • “There MUST be something wrong”
  • “I know it’s real”
  • “I just want you to open me up and find out the problem”
  • “You don’t think it’s in my head do you?”
  • “Sometimes I feel like I’m going crazy
  • “Nobody really knows what I’m going through”
  • “I feel like I’m not the person I used to be”
  • “I feel so alone with this”
  • “I feel like such a burden to my family”
  • “I have no control over this”
  • “ I feel I may have caused some damage”
  • “I feel like a failure”
  • “I feel ashamed”

 

Functional gastrointestinal disorders are especially challenging to manage as patients often struggle to explain their condition during an office visit. A focus group assessment of patient perspectives on moderate to severe IBS and illness severity found the following:

  • IBS is experienced not only as symptoms (primarily pain) but as it affects daily function, thoughts, feelings and behaviors
  • Having IBS permeates life and is experienced even when not having symptoms
  • Core perceptions: uncertainty, unpredictability, loss of freedom, spontaneity and of social contacts
  • Core feelings: fearfulness, shame, embarrassment, social isolation
  • Core behaviors: avoidance of activities, changes in routine to regain sense of control
  • Patients felt stigmatized by a lack of understanding by family, friends and physicians, of the effects of IBS (e.g. needing to rush to bathroom), and that their emotions (e.g. feeling shame) are not being legitimized
  • Comments by others (e.g., “relax” “think of something else”) was perceived as a lack of understanding and a minimization of their IBS; this was ameliorated when patients felt truly understood

(Source: Drossman DA et al. Dig Dis Sci 2009; 54:1532)  Read Full Article: IBS Patient Focus Group_DD 2009

Why are these beliefs so commonly held?

All of these are valid thoughts and feelings that are commonly shared by patients with FGIDs, due to misunderstandings and misconceptions about FGIDs in Western Society. To answer this question, we must understand the history and limitations of Biomedical (reductionistic) thinking and replace it with a more effective Biopsychosocial model.

The concept of the separation of mind and body is dominant and pervasive in western thinking. This has had profound negative effects on research, patient care and the patient-physician relationship.

As Plato said in 400 BC, “The greatest mistake in the treatment of diseases is that there are physicians for the body and physicians for the soul, although the two cannot be separated.”

Realities of FGIDs –And Why Patients Need to Understand What They Have

Plato’s words are especially profound in our dealing with FGIDs since they are REAL medical conditions even though they are not defined by x-ray or endoscopy and exist as dysregulation of neuroenteric functioning and altered mucosal immune function. Despite common misperception, stress doesn’t alone cause FGIDs, but is an enabling factor as for all illness and disease. Efforts to understand FGIDs involve research in brain-gut interactions and to improve patient care involve using a biopsychosocial model.

FGIDs are disorders of altered gastrointestinal function (dysfunction) attributed to:

  • Motility abnormalities
  • Visceral or central hypersensitivity
  • Altered mucosal immune function
  • Altered gut bacteria composition
  • Brain-gut dysregulation

 

If patients understand that FGIDs involve both the mind and the body, they will be able to better explain their symptoms, impact of their symptoms on their daily life and not feel embarrassed about sharing this information with their healthcare provider.

Going to the Doctor: What do you expect in an effective -patient-provider relationship?

Patients should expect that their doctor work with them to identify concerns; explain basis for symptoms; reassure them about their health concerns, management and outcomes; provide a cost-effective evaluation; involve the patient in decisions about treatment and ongoing management; provide continuity of care; and set realistic limits .

Here are the signs of effective physician-patient communications:

  • Doctor provides clear information
  • Mutually agreed upon goals
  • Active role for patients
  • Doctor provides positive effect, empathy, support

 

Ineffective comments by a healthcare provider include:

  • “Don’t worry; it’s nothing serious.”
  • “I’d like to order a few tests to be sure there’s no problem . . . But I believe they’ll be normal.”
  • “Your problem is due to stress

 

Tips for Making the Most of Your Doctor Visit

Once patients understand the genesis of FGIDs and the role of both the mind and the body, they should be better equipped to effectively communicate with their doctor and develop an effective relationship with better health outcomes.

  1. Know the Four Major Functions of the Interview
  • Information gathering
  • Education/Reassurance
  • Begin a therapeutic relationship
  • Implement treatment

 

  1. Be clear on your agenda (what you need to do to get what you expect)
  • Review and characterize your main complaint (s). This should include the location, quality (how it is affecting you): factors making it better or worse; time of onset and frequency/duration; why are you here now (if chronic); what are your worries and concerns.
  • Describe its impact on your quality of life (work, social, emotional, sexual, role) and its effect on your family.
  • Describe what you think you have
  • Raise any concerns and fears
  • If needed, ask to bring a family member or friend

 

Guidelines for Patient Centered Care

  1. Have realistic goals and objectives
    1. for the visit;
    2. for the clinical outcome (with chronic illness there is no “quick fix”);
    3. for your role in self care
  2. Your health care provider is a partner and advisor and the best outcome is when the patient shares in the clinical decision making. That is why it is vital that when communicating with your provider you:
  • Listen actively
  • Seek clarification if you don’t understand
  • Take responsibility to address your issues and concerns
  • Ask questions

 

After the visit: Begin to focus on strategies for self management; this is the key to a better health outcome

Step 1: Acceptance

  • Accept that your symptoms are there
  • Learn all you can about your condition and its management
  • Knowledge is therapeutic

 

Step 2: Get involved

  • Take an active role
  • Develop with your doctor a partnership in the care
  • Understand your doctor’s recommendations and maintain an open dialog

 

Step 3: Set Priorities

  • Look beyond your symptoms to the things important in your life
  • Do what is important
  • Eliminate or reduce what is not important

 

Step 4: Set Realistic Goals

  • Set goals within your power to accomplish
  • Break a larger goal into small manageable steps
  • Take the time to enjoy the success of reaching your goals

 

Step 5: Know Your Rights

  • … to be treated with respect
  • … to ask questions and voice your opinions
  • … to disagree as well as agree
  • … to say no without guilt

 

Step 6: Recognize and Accept Emotions

  • Mind and body are connected
  • Strong emotion affects pain, for better or worse
  • By acknowledging and dealing with your emotions you can reduce e stress and decrease the pain

 

Step 7: Relaxation

  • Stress lowers pain threshold and increases symptoms
  • Relaxation help reclaim control over your body and reduces pain
  • Relaxation options to consider:
  • Deep breathing
  • Relaxation response
  • Hypnosis
  • Yoga and meditation

 

Step 8: Exercise

  • … diverts attention from your symptoms
  • … increases one’s sense of control in life
  • … helps you feel better about yourself

 

Step 9: Refocus

  • With these steps your symptoms are no longer the center of your life
  • Focus on abilities not disabilities
  • You will then see you can live a more normal life

 

Step 10: Reach Out

  • Share your thoughts and feelings with your provider
  • Talk and interact with family and friends in healthy ways
  • Support others and seek support from them as well

 

 Douglas A. Drossman, MD

For further information on educational programs to teach patient centered care go to www.drossmancare.com

For information about Dr. Drossman’s patient practice go to www.drossmangastroenterology.com