In today’s economy there are things you hear quite a bit from people just struggling to pay the bills and keep a roof over their heads.
“I can’t save for retirement – I will just have to work until I drop dead”
“When I get so old I can’t take care of myself anymore I just want to die and not be a bother to anyone”
“When I can’t wipe my ass anymore just pull the plug”
That’s not how it works.
The chances are very, very good that at some point – often sooner than you expect – you are going to get sick and not be able to work. Not sick enough to die – just too sick to work. Modern medicine, vaccinations, diet, sanitation mean that we live to be a lot older. Which also means more time between being able to support and care for ourselves and the actual shutdown of our bodies. We don’t get to just ‘decide’ to die – short of actual suicide – our bodies are designed to keep ticking away even when everything has gone straight to hell. They are really very well designed machines with multiple fail-over systems and redundancies.
#1 complaint of hospice patients who are actually IN the dying process is that it takes so darn long to die. And there is almost never a plug.
Fact is that just like when you came into the world, before you leave it someone is going to have to wipe your ass. So be kind.
Lots of stuff in the news about the very real problem with opioids being diverted into the community and about them being prescribed irresponsibly in the first place. Doctors feel under attack, patients feel under attack, parents and those who have lost loved ones to opioid addiction feel that they are finally being heard. My problem is that this keeps being presented as a zero sum game.
Chronic pain is a huge problem, that continues to grow simply by virtue of improved medicine. What doesn’t kill you is something you live a lot longer having to manage. We are also doing many, many things that our still evolving primate bodies simply were not designed to do – with damage being a result. Autoimmune disease is on the rise, for unknown causes. It all adds up to lots of people who are debilitated with pain, but who are not going to die from it anytime soon.
Doctors do not get adequate training on pain. I can say that with authority because I DO have training on pain. And because pain control is so fraught right now for providers, the result becomes a game of hot potato with the patient being bounced from specialist to specialist with no relief.
I have thought about this issue a lot over the years, and I think I have come up with a solution that could address both the huge problem of untreated pain in this country – which also feeds the huge problem with opioid abuse.
My background is in Hospice and Palliative Care. So pain and symptom control. I know about treating pain. The difference between pain control for a patient who has a less than 6 month prognosis and a patient with chronic pain is time. For hospice patients, long term side effects and issues are not a concern. They also require frequent monitoring and adjustment of dosages as their pain increases or needs change. With chronic pain you DO need to worry about long term effects and side effects. But you also have the luxury of a much longer time to trial different plans and medications and less expectation of rapidly increasing severity. Otherwise the goals and treatments should be identical.
My job as a hospice nurse was to ensure that my patient had adequate pain control. This involved a detailed pain assessment as well as an understanding of their disease process and the most likely etiology of their pain as well as the type. Once that was established, I discussed their goals for pain control, discussed the best initial medications for them – usually a long acting baseline med, a short acting breakthrough med and often adjuvant medications to potentiate or bolster the existing meds and often allow a lower dosage of opioids overall if they were being used. This plan was then discussed with the physician and pharmacist, the drugs were delivered, and the medications were begun. This was not the end of the process – it was the beginning.
Regular nursing visits to assess the effectiveness of the regimen came next. Dosages were adjusted at each visit. Pill counts are done to assess what is being used. Patient physical assessment is done at each visit, as well as ongoing discussion with the patient. It is often early in these visits that a patient or family member will advise you of a problem with someone diverting drugs, or potentially diverting drugs. Some patients are known to be problematic for diversion by themselves or others. This does NOT mean they don’t get pain control!! It means that rather than giving someone a big bottle of pills that are actually spendable like cash for goods and services in some communities, we have to be more creative in pain control. I have used fentanyl transdermal patches as one method. Delivered every three days
and administered by the nurse. I have used IV narcotics delivered via a mechanical pump with a password lockout so the patient cannot change the dosage. I have used a simple lockbox in the custody of a trusted family member who is in charge of administering the drugs and willing to take responsibility. The goal here is that the patient has the pain control they need, but I and possibly the caregiver are both taking responsibility to do our best to keep those meds out of the community.
That is enlightened self interest. We ensure that we remain trustworthy for physicians to feel confident entrusting both the care of their patients and their prescriptive powers on our word. So registered nursing visits throughout the entire course of the medication regimen, with the goal of ensuring that our patient is getting the pain control needed, and the responsibility of keeping those meds out of circulation. And when our job is done, when the pain is no longer an issue, our final job is to dispose of all leftover medications, with a witness, in a method that keeps it out of the community and out of the water. The ONLY thing keeping this completely sane and rational approach from being available to those who require palliative care rather than only those who are dying is funding. There is no medicare program that pays for the services. We are willing to spend billions on yet another ‘War’ on opioids – which are actually really amazing tools for treating pain when used appropriately – rather than spending that money on ensuring that those who suffer are the ones getting the medications. Doctors would LOVE this, seriously. (If you are a physician and would not love this please feel free to comment!)
If I were designing a program for chronic pain, it would involve an initial referral from a physician to a Palliative Care home health nurse for an assessment and admission if appropriate. Initial visits weekly to assess pain and response. Moving to biweekly after two months, and monthly after 6 months. Other visits prn. Like hospice it would also include home health aide assistance as needed, social worker, PT and OT. Respite for caregivers included if we could get it past the bean counters.