The following does not represent Dragon Claw policy but does represent a serious online conversation.

 

Hi Deb,

 

I of course don’t belong in the USA but do belong to many support groups of those with chronic disorders that have for many landed them up on opioid analgesia etc, with or without dependency.

 

My background

 

I was just an ordinary nurse working in units, and operating theatres and final 3rd year in the ER then swapped to part time in rest homes where palliative care wings are also found.  Going by the support groups especially the Fibro ones the biggest complaints I read of how  members are treated by  nurses regarding pain management,  I shall try and bullet point. YES I am well aware the happy client doesn’t go and moan on the social media:

  1. If only the Nurse Manager would return calls, the anxiety, the stress of them [patient] waiting would be 80% of the treatment.
  2. No one should have to make 5-10x phone calls and never get called back over a 2wk period.
  3. Do not judge the client. They were given medication with no warnings of dependency or how to deal with it.
  4. FUNNY how only cancer patients feel pain, 80% of cancer patients get better, chronic disorders can only hope to die.  Don’t give that plastic response, "you don’t have cancer you cant feel pain." 
  5. A nurse should learn your disease and don’t blame the patient. It seems that having a mal-absorption problem either with  gastroparesis and mortality disorders, as well as chronic pancreatitis, these folk take their meds but don’t absorb sufficiently for the med to be measured in their urine. Very few patients ever sell their medication.
  6. Learn the disorder, seems that pancreatitis can be caused by other things, that alcohol plays less a part in the cause than in the 1960s.  Med books that are still being quoted say.. to read that those with hereditary panky must drink... and be abused by the nurse manager at their PCPs eps. is very sad to read. Don’t they check the chart before abusing the patient?
  7. We all know that it can be mind over matter, but first need to sort the matter over mind. That is what a nurse manager who is dealing with pain management should do and I would have thought  one of the top priorities. 
  8. Don’t forget the TLC part of management, the hottie bottle, the warm drink, the gentle walk, the diversion of going out and socialising, the having a furry friend, or feathery. 
  9. Give the client respect not judgement.

Oh and yes there are good stories also, but something must be in the air lately because boy have there been some really curly ones. I know my time in the ER had me meet some of those chronic illness carriers. They were a challenge, and I’m proud to say that  several of them I managed to help them get off their meds  and dependency and start a new life. An explanation of the why’s and what’s basically did it.  Probably not what you were wanting, but ya got it and all for free.

 

Brenda (USA)

 

 

By A Doctor

 

The progress is noteworthy. I will offer a few thoughts.

First, I think one hardwires an insoluble problem into the system when the focus (of either a conference or of care) is on **pain management** rather than on the patient’s ability to achieve functional goals, participate in and enjoy of activities, maintain fulfilling relationships.

I start from the perspective of: “Let’s see what we can do together to keep the pain from ruining your life.”  I do not start with: “Let’s get rid of your pain.”

This requires a solid and long-term trust-based relationship. It requires an initial conversation (frequently revised) about patient values, preferences, and goals. It requires flexibility rather than rigid medication algorithms. (E.g., giving the grandparent the ability to increase medication enough every Saturday to spend the day caring for two grandchildren.)

The initial conversation is about the patient, the patient’s life and activities and goals. It must also cover the pain, the origin of the pain, and prior treatment attempts.  But the visit is NOT about the pain, it is about the patient.

I have felt that seeing patients every 2-3 months for a visit that is not rushed and is focused on function, mood, and coping is key. If one has generated a workable list of goals, one can use this list to problem solve.

I abhor the concept and standardized approach to a ‘narcotic contract’ which basically says: “Do what the doctor tells you or I will withhold treatment.” Instead, I have used a medication management agreement that specifies goals and obligations for both me and my patient. I have attached a copy of one version.

I also abhor the routine use of urine drug screens. I don’t test for presence of antihypertensives or antidepressants in the system of patients I treat and threaten to fire them based on results. I have used drug screens on occasion when a concern arose, but only rarely, because my feeling is that if the patient and I cannot trust each other, we have no business working together. I don’t consider marijuana use a reason to with hold pain medication or other treatments.

 

Patient

 

I have had both good and bad experiences with chronic pain management. Both being treated like an individual and being herded like a cattle. 

The bad: I met with an ortho at Stanford, who, although said I needed to get a hip replacement due to a collapsed hip he thought I was too sensitive. I went to a pain management clinic, where after a long consultation they recommended I get on methadone. After being treated like a child, filling out forms about how I would be treated if I missed an appointment, or refused to be drug tested regularly I decided that 1- methadone was overkill and 2- the burden of the mental overhead the pain management clinic commitment was too much to bear.  I told them I decided to pave my own way and went to my local primary and work with a local pain doctor. Ultimately my local GP manages all my regular meds. My psychiatrist reviews the meds and makes recommendations. My pain doctor reviews my meds annually or bi annually! I think it is really important to have an adult relationship with your medical practitioner. I have enough health issues that I am not interested in any relationship that treats me like a child. I am an adult, a “professional” patient, and I expect to be treated as such. Ironically, (and this is the kicker). 6 months after my pain management appointment at Stanford, while I was in the hospital recovering, I have 3 pain doctors come in my room and start talking to me about my methadone treatment. That’s when I sit up and say…wait a minute…I never took methadone, and asked where they got that idea…they said, from your medical record. That’s when I lost it! I asked for correction in my record. 

Sadly, it has taken me a long time to get to this point of standing up for myself.….being firm and trusting myself.  I have long lived with paternalistic medical relationships because somehow I bought into the whole doctors are Gods thinking. After being burned and literally screwed by the system (wrong DX, and bad reaction to medications given to me for DX that has resulted in a rare ortho condition that has resulted in a myriad of surgeries. In short…I am now disabled.

 

The illicit substance part: 

 

In general, I have been fortunate working with my clinicians with pain management that include opiates and marijuana; I am very up front with my Drs. and so far, have not been thrown off the boat. I know so many that are not as fortunate. I have extreme deep bone pain that is terrible at night. Personally, I hate opioids, and cannot tolerate them for any length of time, without being emotionally rough around the edges, besides all the other GI issues, at the same time I need something to get through the day and sleep. So, I have turned to marijuana, which I have to admit help keep me going without making me psycho. Tinctures are expensive and have less effects so smoking is the fastest, but has it’s own problems…which I try to minimize.  My worst pain is at night, and while smoking marijuana doesn’t cut it, eating it has become the best sleep remedy ever for me. I do use prescribed sleeping aids, but swap between them and marijuana so I do not habituate to any of them.

I have come to the position to only work with Doctor’s that treat me like an adult. I am responsible for my healthcare and am an active willing participate. When you are treated with trust you respond with trust and as such that is a win for everyone! The converse is also true….who doesn’t remember their teen years….

Thanks for bringing this up! It is so important to look at your patients as people who are doing the best they can in life and in their treatment. And, us patient have to look at our doctor’s as well in that same light! 

 

 

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