chronic pain and the doctor-patient relationship

 

This is a summary of a participatory action research project I undertook in 1996/1997.

The doctor-patient relationship has been looked at from various points of view. Patients’ satisfaction an compliance are perhaps the ones that are best known. I was interested in the relationship between doctors and a particular set of patients: persons with chronic pain. From now on I will refer to these persons as “clients”. In the literature, I could find very little that talked about the doctor-client relationship; the four articles I did find touched only on small aspects of the relationship.

 

My interest in the doctor-client relationship was kindled by the observation I had made that clients react angry, hurt or offended when doctors or other health professionals insinuate that their pain is “all in their head”. I wanted to investigate this situation further and also find out about other problematic areas in the doctor-client relationship. Since this relationship holds an important key to clients’ wellbeing, I also wanted to investigate what could be done to solve any problems that might be found. It appeared to me that the best way to do this was to embark on an action research project.

 

In action research, the stakeholders in a social situation – in this case, clients and doctors – work on pinpointing problem areas (the reconnaissance stage), on planning solutions for them (the planning stage), on trying them out (the stage of acting-observing-reacting) and finally evaluating these attempts (the reflection stage).

 

This report covers the stage of reconnaissance and touches on the beginning of the planning stage. I also decided to use an approach where stakeholders had input into how the project was to run. For this purpose, I invited stakeholders to participate in focus groups. Focus group participants also contributed a large part of the information gathered in this study.

In the first focus group, participants shortlisted 10 topics to focus on: – doctors do not get enough information from patients – doctors need better listening skills – doctors and clients do not know enough about chronic pain – doctors and clients do not have enough time for dialogue – medicine is not an exact science – clients do not have enough energy (to go to the doctor, to communicate efficiently, etc.) – clients’ symptoms are discounted – chronic pain is an invisible disability – doctors and clients need to have a dynamic, working, active partnership.

 

In four focus groups, these issues were discussed in more detail, especially general doctors’ knowledge and perceived clients’ and doctors’ roles. For the planning stage, two meetings have been held so far. Three projects were planned: one, to have clients present themselves to medical students, in order for them to have better insight into clients’ realities; two, to work on establishing a chronic pain awareness week, and three, to design (or locate an existing) template for a brief patient profile which documents diagnoses, symptoms, medication, etc. This profile would be kept and updated both by the client and the doctor, and would be especially helpful when communicating with new doctors.

 

Focus group participants also evaluated the project up to now, stating that they were satisfied with the learning so far; however, they were unsure about the project’s ability to make any significant changes. In addition to holding focus groups, two rounds of interviews were held with 48 clients and 19 doctors and health professionals. Interviews were held in person, via telephone and on the internet.

 

The first round concerned interviewees’ general views on the doctor-client relationship, the second round concerned interviewees’ opinions regarding doctors’ knowledge, how that knowledge could be increased, and opinions on the “ideal” doctor-client relationship. The first round of these questions as well as the question relating to the ideal doctor-client relationship were part of the reconnaissance stage. Information gathered from the reconnaissance stage was analyzed via IZE, an information management text database.

 

It appeared that the following topics were of most concern to participants: “doctors’ knowledge”: this comprises everything from medical and psychological knowledge regarding the nature, management and treatment of chronic pain, knowledge of patients’ physical, psychological, spiritual and social experience, to communicating existing knowledge to patients.

 

Participants were particularly concerned with the low level of education of medical students on chronic pain, with the lack of knowledge of the psychosocial aspects of pain, and with the reluctance of some doctors to acknowledge the limits of their knowledge.

 

The topic “doctor-client relationship in general” touches on many elements such as the (perceived) roles of the persons in relationship. Length of relationship, trust and respect were important issues here, as well as a mutual wish for the relationship to be an equitable partnership.

 

Another important topic was “time”. Participants decried the systemic lack of time found in all doctor-patient interactions. The need for abundant time to assess clients and to deal with complex biopsychosocial issues was discussed, as well as some doctors’ attempts to deal with their discomfort with clients by cutting office visits short.

 

The topic of “medication” refers to pain medication, and specifically to controlled substances. Many clients perceived that doctors were not forthcoming enough in prescribing controlled substances when needed and were offended when they were suspected of being drug abusers.

 

The topic of “clients’ knowledge” refers to clients’ knowledge about their specific condition, chronic pain in general, as well as their own experience and knowledge of themselves. Many participants felt that clients need to be acknowledged for their knowledge of their own experiences. Clients felt that some doctors did not take their knowledge seriously. Some doctors felt that clients’ knowledge was frustratingly sketchy. Many clients’ knowledge about biopsychosocial issues appears to be as incomplete as doctors’.

 

“Doctors’ listening skills” refers to doctors’ ability to listen attentively and without unnecessary interruptions. Some clients found that they were frequently cut off by doctors. Other topics found to be of importance were the assessment of pain, psychogenic pain, and doctors’ ability to empathize.

 

The shortcomings of the project lie in doctors’ lack of participation and time pressure which is detrimental to the organic process of participant- driven action research. It was unfortunate that I was the only researcher: action research is a multi-faceted approach that calls for much and often very quick decision making, and for careful and critical analysis. Such tasks are much better dealt with by more than one researcher. Finally, no generalizations can be made from this project in a statistical sense; however, the technique of illuminating the issue from various points of view lends the project practical relevance.

The contributions of this project consist in its addressing the doctor- patient relationship in a comprehensive fashion, in increasing the scant literature on the relationship between doctors and persons with chronic pain, and in motivating the doctors and clients to alleviate the shortcomings found in their interactions. It is also a contribution to online research, a methodology still in its infancy. Finally, this study gives insight into a different population of clients, since client participants did not come from the population of clinic, hospital or insurance consumers which is the population normally studied.

15 thoughts on “chronic pain and the doctor-patient relationship

  1. marie kennedy

    The doctor patient relationship is initiated by the doctor obtaining your perscription history via the DEA. Some are so restrictive that any forgotten information is found and the patient is thought to be avasive and engaging in diversion or abuse. That then is the reason to stop treatment and discharge the patient from his/her personal care. There seems to be no room for discussion or the possibility of pseudoaddiction as related to being under medicated. thanks for the info enjoyed the information!

  2. Susan McKulsky

    Telemedicine and various forms of remote patient care (which are increasing for chronic patients) will add to the complexities of the doctor-patient relationship. Already through websites such as http://onlineconsultation.com and others users receive consultations by doctors and others over the internet. I bet doctors who see the patient via web conferencing tools will exhibit less empathy toward their patients. However, they may be more objective as well.

  3. isabella mori

    @Susan, that’s an interesting point of view. It’s been my experience that people tend to carry their relationship “mode” into virtual interaction, as well. Maybe I’ll see if I can find some information on this and blog about it.

  4. Drug Rehab Program

    I think S. Freud said it all… If you want to know more, you should definitely read the works of Freud… his works can change your perspective on relationships and many other things that psychologically related.

  5. Online Doctor

    A user of our site told us about this interesting conversation on this blog and here is my point of view:

    I agree that people do tend to carry their relationship “mode” into virtual interaction. However, if their relationship originated online, their “mode” of interacting has a much greater tendency to be different than their usual “mode” offline.

  6. Sandford Tuey

    Luckily I have a relationship with my doctor that goes back to my youth. He knows what I was like before my chronic pain and has prescribed morphine pills so that I do not have to go to a hospital E.R. everytime I have an attack.

    I have noticed when I have attacks in other cities the new doctors that don’t know me are very cautious and almost non-believing in prescribing I.V. morphine and have never provided me with a morphine pill prescription. My opinion is that they do not trust a non-regular patient’s explanation of the chronic pain as true. I am referred to go back to my G.P. and have the prescription refilled by him. Which I have no other choice to do.

    While traveling (especially by air into the USA), I have been questioned about bringing morphine into the country. This is a time consuming interogation that only stops once I pull out a special letter/prescription explanation of my chronic pain condition.

    My future concern (within the next five years), is that my doctor is going to retire and I will not have such a long history with the next doctor. New doctors that I have tried to become a patient with are hesitant to be involved with a patient that requires a morphine prescription (medical marijuana patients are treated even worse – I am not one).

    So I expect my life will require even more explanations on my behalf after my doctor no longer will be treating me. I fear this and yet know that life will go on until my illness stops me from existing. All in due time.

    Wish there was some way to have doctors understand the problems with chronic pain more efficiently so that the patient who is suffering through the agony does not have to try and verabalize/explain their life’s medical history while squirming on a hospital ER bed.

    Many times I was told that records from one hospital were not available??? This needs to be addressed as the last thing a patient needs is to be interogated while in tremendous pain.

    Good post!

  7. isabella mori

    hi sandford

    a friend of mine who suffers from cluster headaches (also referred to as “suicide headaches” because of their severity) went through absolute hell for about 6 months when she moved from canada to the states. in canada, she had found what worked for her but when she moved to the states, she found what you described. after 6 months of hard work and unimaginable suffering, she found her rhythm again.

    what DOES seem to help sometimes is to bring certain types of documentation with you. i know someone with RSD who, last time i talked to, seemed to have that reasonably well figured out. let me know if you’d like to to get in touch with her. she is also a blogger and blogs about her experience with RSD but anyone reading her blog needs to have an introduction.

  8. lynn

    I suffer from cronic pain and it’s very hard for me to keep a doctor, anytime i disagree with them or stand up for my rightnot to have twenty different medications shoved down my troat, i’m labled a trouble makerand pushed off to the next DR.. ,where the cycle starts again. As patients do we not have the right too disagree and yet maintain that doctor patient relationship?

  9. Judy L.

    I logged into this website because this is exactly what is happening to me. I am being turned down for pain meds because I came back to my doctor to soon a couple of times for a refill on methodone,so the first thing they think-I’m selling them or abusing them. For one it takes more than 1-2 3x a day. Get real this is pain, real pain I’ve been dealing with for the past, going on 6 years, for a torn meniscus that was not properly done. I’ve got this limp and pain so intense daily that to me it seems nothing will work but a knee replacement in which they do not want to do because, first of all it was my age. Now they are going on sobriety. I had been clean for 3 1/2 years. One day I couldn’t stand the pain any longer and decided to medicate myself and went out and bought a bottle. Now they say I need to have 6months under my belt before they consider, its been 3 months now. Is there any other way to get help for this besides buying the pills off the street?

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