Ruptures in Patient – Provider Relationships: An Unspoken Unpleasant Truth

Ruptures in Patient – Provider Relationships: An Unspoken Unpleasant Truth

It has been well documented that patients with functional illnesses (FI) (What are Functional Illnesses?) and functional neurological disorders (FND) (What is FND?) often change healthcare and wellness providers, although the reason for such phenomenon is not yet well understood by physicians and the healthcare system in general, which perpetuates such problem. 

We all know the importance of the patient-provider/professional relationship. Any person who is in charge of diagnosing and treating a mental, emotional, physical problem or illness will be considered as having a vital role in our lives. We all get sick at some point; it is part of the universal laws, and an unavoidable matter. Therefore, we place high hopes in those who can save us and put an end to the suffering that usually accompanies ailments. Additionally, healthcare and wellness professionals, in order to do their job, must get to know us at a deeper level; so, we open ourselves in heart, mind and physical body to them, sharing our most intimate circumstances, struggles and hopes. 

The conversational inquiry and treatment procedures that take place between patients and professionals are often uncomfortable at many levels, and certainly we do not want to go through the same experience repeatedly, so there must be very good reasons for which a patient decides to change or stop seeing a provider. The rupture in this relationship, and the search for a new person who could help us, although necessary at times, I suspect brings about certain thoughts, feelings, and emotions, which are rarely discussed among patients and the medical community. 

All these unknowns are perpetuating the disconnect between patients and care providers, who are often unaware of everything taking place underneath the surface, from the causes to the consequences of such breaches, including how to best deal with such phenomenon. 

I have created a brief anonymous QUESTIONNAIRE with the goal of finding answers to some of the incognito questions that I have posed above. Your anonymous contribution will be submitted for publication in the form of a poster or manuscript presentation, depending on the number of responses and opportunities for raising awareness. I will use this data in lectures and other educational opportunities, hoping that by doing so, the experience of patients with FI and FND becomes healthier and more joyful, as they navigate the healthcare system, from diagnosis to treatment, and hopefully recovery.

 Below is an outline of the questions in case you would like to read them before officially completing the questionnaire. If you are a patient with FI or FND and you have had to change your healthcare or wellness provider, please mark the reasons why you had to undertake such decision. Choose everything that applies:

 1. Why did you decide to change your care provider? 

• I felt rushed during the visits 

• The duration of the encounters was too short, and did not offer enough time to address everything that was needed 

• The provider asked too many specific, yes/no questions, not giving me the opportunity to elaborate. 

• The provider did not seem to listen to my explanations 

• The provider was more focused on the computer than on myself 

• The provider was talking over me, quite often 

• I felt that the provider was dismissing my complaints and descriptions of such 

• The provider appeared to be blaming me for my problems 

• The provider directly told me or suggested that it was “all in my head” 

• The provider did not take responsibility for the lack of knowledge about functional illnesses and FND.  

• I felt like the provider did not know how to treat me 

• The provider seemed very stressed, disconnected from their job, blue, or burned out 

• It was the provider who gave me a referral to another specialist 

• The provider was ordering tests, treatments and/or referrals without asking for my opinion or explaining the reasoning behind it 

• I was not understanding what was going on with my care 

• I felt that I was unable to speak up 

• I gave up because the system had failed me repeatedly 

• The consultations and therapies were very costly
• I did not like the provider style of care 

• The provider didn’t have a holistic approach

2. If you stopped assisting to your treatment sessions, please describe why: 

• It was costly
• I did not have the time availability required to participate in the sessions 

• I felt that the intervention was not being helpful 

• The results of the treatment program were too slow 

• I did not know what to expect during the treatment sessions 

• The treatment sessions were scary or uncomfortable 

• Similar types of therapies did not work in the past, so I lost enthusiasm 

• I was hoping for something else. Describe what_____________________ 

3. What emotions have you noticed associated with any previous change or rupture with your care provider? Mark all that applies:

• Sadness
• Anger
• Frustration
• Relieve
• Apathy
• Others: Please describe _______________________________________

What do you think? Ready to fill out the questionnaire?

I have some suggestions for both, wellness professionals and patients, that could allow you to navigate more positively, and to recover from, a rupture in the patient-provider relationship, if that has recently affected you personally. 

If you are a patient, consider to:

• Speak up: Entertain letting the provider know about your thoughts, feelings, and emotions, what is making you uncomfortable, and feeling unsafe, or not cared for properly. Although speaking up can feel threatening or scary at times, specially initially, in the moments before starting to share, usually after you express your thoughts, it can feel liberating. Speaking up could also allow the provider to correct any unintentional mistakes or damaging behavior. 

• Educate the provider: FND and FI are still poorly understood conditions, and many professionals depend on the patient’s guidance, in order to better help. Suggesting the desired behavior could go a long way, not only for you, but also for subsequent patients attended by that professional. Gentle statements such as: “doctor, it is very helpful when you allow me to elaborate on my answers, it makes me feel ____ (heard, understood, etc)” 

• Share your experience: Once you have identified the specific behavior that is making you feel unsafe, consider sharing it with your provider. This could be in the form of a question or a gentle statement, to avoid confrontation. For example, “doctor, is it necessary to be on the computer so much? It makes me feel _____” Or “therapist, could you please explain the goals of this treatment? It would help me by ______”. Naming our emotional experience can be soothing for our nervous system and body, and it indirectly lets the provider know how they could excel in their care. 

• Journaling: This could be particularly helpful when direct communication feels unsafe or is impossible for logistic reasons. Journaling is a good method to organize our feelings and thoughts before sharing them, and it is a way of canalizing the energy that builds in response to the healthcare experience. Nowadays journaling can also be done electronically or online, and it could be shared with others to build community and together, find alternative and creative solutions to the problems commonly encountered, when we navigate the healthcare system. 

• Avoid putting yourself in the same situation repeatedly: Once you have identified what triggered the rupture with your healthcare or wellness professional, you could ask your next provider about his/her/their specific behavior or style of care, to avoid getting too far in the relationship, and then being disappointed again. Setting up mutual expectations, desires, and hopes can be a positive way of starting a fruitful alliance. 

• Notice your body – emotions – mental response to environmental situations and relationships: This is a vital and foundational concept to navigate the challenges of life, while staying healthy and avoiding relapse or worsening of FI and FND. As you navigate the healthcare system, notice how your body, mind and emotions respond to the environmental events, and honor your experience throughout the process. 

• Stay observant for worsening: changing healthcare or wellness provider can be challenging at times, and it is well known that FI and FND can be triggered and worsened by any type of emotional, physical, mental, or environmental stressors. If you notice that your symptoms increase, communicate this to your provider, friends and/or family members, as together you could address everything taking place in a supportive and holistic manner. 

• Pamper yourself, practice self-care, and self-love: This is another foundational step in order to prevent worsening or the development of FI and FND in front of life’s challenges. Listen to your body, mind, and emotions, and notice the urges and desires of your being, trying to welcome them, and honor them as much as possible. Internal conflicts, and mind-body split characterized by guilt, shame, self-blame and other manifestations of self-punishment are a very dangerous road and should be addressed and discussed as soon as they are noticed. 

• Do not give up: remind yourself that the field of functional medicine is slowly improving. The fact that things did not go well with one professional, do not mean that the phenomenon will be necessarily repeated. The next positive turn could be around the corner! Find trust, enthusiasm, confidence within yourself and expand on those emotions, thoughts, and sensations. 

• Participate in community events: activities hosted by me, and other professionals and organizations could be a great way of sharing your experience, listening to what others have gone through, and in this manner we could build meaning behind the challenges we have faced, ultimately becoming wiser, stronger and more resilient. 

• Collect your records: whenever you are leaving a medical practice, make sure you get copies of your records, particularly all test results, and the clinical notes from the first and last encounters with that professional. This will prevent gaps in understanding your care. 

• Organize your story: a bullet point style chronogram of events, symptoms, tests, and providers could be helpful for the next professional involved in your care. Make sure this is summarized and objective, as lengthy records are more difficult to review and understand.

If you are a healthcare or wellness professional, consider to:

• Ask the patient at the end of each visit about his/her experience: a simple question such as: “how did I do today?”, “have I met your expectations for the visit?” could offer valuable insights as to what could have been done better. The patient is given an opportunity to share, and it speaks a lot about the professional interest in the person’s experience. 

• If the patient missed an appointment, reach out, show care and compassion: reaching out could be done through an office staff member and it could let the patient know that you are aware of, and concerned about their wellbeing. Remember that patients with FI and FND have quite often gone through traumas, stressors and have been repeatedly let down by people and systems. This simple step could be healing in itself! 

• Apologize if necessary: if a patient feels that a specific behavior, which could be derived from your person or be systemic, has affected them directly or indirectly, you could consider, as a representative of the field and the healthcare system, to apologize, for the shortcomings and misunderstandings that still permeate functional illnesses.
• Try to learn from the patient’s experience: there is a great deal that we can learn from a disappointed patient, and what they share with us should be celebrated and utilized to improve the care we provide to future individuals. The reasons why a patient may change a healthcare provider could be enlightening not only personally, but also for other colleagues in the field 

• Help the patient find a more suitable provider: whenever possible, recommend the patient to another colleague with expertise in the field of functional medicine within your practice or hospital, or if necessary, an outside referral with coordination of care is appropriate. Navigating the healthcare system with functional illnesses is not an easy task, and all the assistance provided to patients can go a long way.

Are there any other recommendations that you feel could be helpful? 

Join our next Brainstorming FND Wisdom session to build together a brighter future for this important field!

 At your service,

Yadira Velazquez, MD

Neurologist and Clinical Neurophysiologist

Functional Illnesses Healing Ally