By R Carter
Not a week goes by anymore that I’m not reading about another death in the chronic pain community, a results of forced tapers, discharged from a practice, loss of a prescriber for other reasons, followed by an inability to find a new one. Today, March 19, 2019 I learned of Dawn T Anderson, a former Registered Nurse with multiple medical problems who died as a results of those, but more importantly, she died in agony because the current system was inadequate for addressing her chronic pain.
From what I’ve read Dawn may have been qualified for Palliative Care, defined as specialized medical care for people with serious illnesses. This type of care is focused on providing relief from the symptoms and stress of serious illnesses. The goal is to improve quality of life for both the patient and the family.
- What they don’t tell you.
- Serious illness is often defined as an illness or a combination of conditions which leads to death if not treated.
- Treatment is for the purpose of easing suffering when treatment is not expected to lead to a cure or a remission.
Under Federal and State guidelines, including guidelines issued by the CDC, someone qualified for palliative care is not bound to current restrictions placed on prescribing opiates to relieve intractable pain.
Yet after losing a long time prescriber, Dawn was unable to initiate care with a new provider because of a shortage of pain specialist in her area for one, and likely because of the current fear primary care providers have about treating chronic pain.
No one is immune to these issues, I am currently looking for a new pain specialist after being discharged from a practice after refusing a fourth round of bimonthly trigger point injections which were failing to produce any results. This is a common response from some pain specialist and is a topic for another post. Suffice it to say that such motivations are at least partially motivated by a need to profit from an office visit where the patient has Medicare or Medicaid.
I’ve been able to weather these sudden changes without a break in care, in part because of some good luck but also because I put I good deal of effort into anticipating outcomes. These have been lessons hard learned. Like most people I followed conventional thinking by letting myself be led by the nose assuming a doctor had my best interest at heart. I’d been lulled into this way of thinking because for the first thirteen year as a CPP, I had a prescriber in Oklahoma who actually cared about my welfare.
In 2016 I moved to Ohio to be closer to family and found myself in an environment quite hostile towards CPP. Under normal conditions I would not recommend the strategies I now use, but these are no longer normal times. A mindset which equates treatment for CPP as no different from treating a drug abuser is the primary driving force behind it all.
If you’re a CPP who requires opiates and you’re not already angry about your treatment you soon will be. So I list below the strategies I’ve tried at one time or another in order cope with these sudden changes when they occur. Each has its place depending on your circumstances and timing of anticipated events and there may be others.
Get a Primary Care Provider
- A first line defense in dealing with sudden changes in care is having a good and trustworthy relationship with a primary care provider and there’s good logic behind this.
- If you haven’t had this conversation with your PCP, do so, don’t assume or wait until you’re in a bind. Ask them if they will be willing to prescribe for you in the event of a sudden loss of care from a pain specialist. If not, find another PCP.
- Any physician who discharges you from care has an ethical responsibility, as defined by both Federal and State standards of care, to ensure your health and life are not placed in danger by such an action.
- While a physician in private practice has the right to refuse care to anyone, for any reason and at any time, once they accept a patient for treatment, they have an ethical responsibility for that care until the patient is under the care of another physician.
- If discharge from a practice ethics dictate that your doctor should give you a 30 day supply of medication and a written referral to another specialist.
- Few do this and it goes unnoticed because patient do not file complaints with state medical boards or with federal authorities.
- These ethic guidelines can be found in many places online, here are a few. American Hospital Association, National Association for Healthcare Quality, National Institute of Health, The Compliance and Ethic Blog.
- Failure to follow through on ensuring coverage of care is considered patient abandonment. The liability risk for a provider increases proportional to the level of risk a patient has, based on all medical conditions impacted by a break in care.
- For patients who have multiple medical problems, such as what Dawn had, it is likely a break in pain care will complicate other medical conditions.
- It’s not enough to claim this; it must be documented in a medical record by more than one physician, which is why every CPP seeing a pain specialist should have a sound relationship with a PCP.
- The term used for multiple medical problems which together are more severe than any single problem is comorbidity. Meaning, the combined effects of all conditions are synergistic and substantially raise the risk for complications which could lead to a serious loss of health or death.
- Documenting your care
- Don’t leave it to any doctor to fully document your medical care and outcomes from treatment, keep a diary. Carry it with you when you go for an office visit and document each office visit after it’s completed. If possible, keep a video diary as it carries a greater impact.
- Document your response to care as the days go by. It’s unlikely a doctor will want or care to see your notes, so don’t volunteer this information. This record is for your benefit, allowing you to tract facts and details which may be forgotten over time. Important facts which later may give clues to a missed problem that leads to a complication.
- Should you end up with a complication, in an ER or hospital as a result of having an unethical break in care, your diary is important information you may want to give an attorney.
- Backup Care
- The most important reason for having a good relationship with a PCP is in case you have a break in care with a pain specialist.
- Medical ethics dictate that your PCP is now responsible for providing care until you can locate another specialist.
- This not only an ethical obligation but depending on your overall medical condition, it may be a legal obligation as well.
- Your PCP is your backup for unplanned events, the one who ensures you have no break in care as you navigate this broken system we have to endure.
Managing your pain and tolerance
- This strategy is dependent on your circumstances and how well your chronic pain is managed.
- Plan a routine every six months or so, self-tapper, reducing the amount of medication by 10-30% for 2-3 weeks.
- This has two advantages, it lowers tolerance to medication and it leaves a small amount of medication to keep in reserve for days when you must be up and active above your normal routine.
- For some, pain is highly influenced by physical activity, lawn care, house chores, walking or standing for more than 10 minutes can be difficult for some and as time passes pain levels increase.
- Use that extra medication in small amounts and for short periods to weather through a difficult situation.
- Depending on your prescriber, such activity could be construed as hording; I hate that word, as it implies intent to save medication for a purpose of abuse or sale.
- Some who treat chronic pain will view your treatment through red colored, drug abuse glasses and as such, are incapable of understanding why this is anything other than smart pain management, so don’t volunteer such information.
- I don’t advocate sharing your self-tapering efforts with your prescriber unless you first discuss it with them. First get a nod from them that this is acceptable and responsible actions in managing your pain before you start.
Learn to Say No
- Thirty years ago, before managed care and HMO’s, a doctor could spend time with you answering questions and explaining; that’s no longer possible. Reimbursement rates for physicians have been cut to such low levels, requirements for documenting care are so high, getting approval for treatments is so time consuming, most pain specialist will be on a fast track to a billable solution as soon as they walk in the exam room.
- This is not a criticism, it’s a necessary fact. Doctor’s assume so much risk in prescribing opiates they need to be well compensated, so don’t be too hard on your prescriber for forwarding ideas on procedures, that’s what they are there for.
- Instead talk to them, don’t just tell them, show them your documentation so they don’t have to rely on your words alone.
- This is a big help with some providers and they will appreciate your proactive steps.
- Still, some providers push procedures too much, knowing when that is and when it’s not takes time. One of the biggest contributors to chronic pain is excessive procedures. Although designed to provide pain relief, any invasive procedure comes with risks, some of which may actually complicate your pain problem. Before agreeing to a procedure, seek a second or third opinion from another specialist.
- Educate yourself, get involved with others in the chronic pain community and learn from their experiences. Get online and read, keep reading until your mind goes numb, take a break and go back and read some more.
- If you have a procedure that fails, get copies of your medical records, x-rays and tests for your personal records. Chances are at some point, you’ll have a different doctor who wants to repeat procedures you’ve already tried. Provide copies of your previous tests and procedures, if he/she refuses to believe your previous procedure failed.
- Always remember:
- It’s your body
- You have to live the consequence good or bad
- Once you sign an informed consent, regardless of the outcome, you have few options if a procedure makes matters worse.
- While no is a word you should have in your vocabulary, it’s not without some risk. With some providers there is a delicate dance between their efforts to uncover drug seeking behavior and treating your legitimate pain. Use cautious judgement, but sometime a better response is to be compliant with a request until your prescriber gets past their own fears.
How Much Pain am I Having?
- There are no tests which can measure pain. While there is some promising research in this area, so far nothing conclusive, so pain remains a subjective experience and it’s from this subjective body of information your doctor has to make a judgement call on what’s best for you.
- Own your pain.
- Never let anyone dismiss or minimize your experience. If they do, be respectful but firm, let them know what you know, there are no tests which measure pain, it’s your body and pain is a personal but subjective experience.
- Learn to grade your pain on a pain scale, such as this link. There are a lot of pain scales out there, but most are ineffective at communicating your pain. I highly recommend this scale as the descriptions communicate best what you’re experiencing.
- Most pain specialist will tell you, they can never completely eliminate your pain. This both true and not true. Again, it depends on your medical problem(s) and your tolerance to medication. Still most long term pain patients should expect to have some pain all the time, anywhere from a level 1-4.
- If it’s possible to keep your pain at these levels most of the time, you will be considered to have good pain management.