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This story is from the Anamnesis episode called Abandoned and starts at 25:50 on the podcast. It’s from Beth Darnall, PhD, a pain psychologist and director of Stanford University’s Pain Relief Innovations Lab.
My background is that I am a pain psychologist, and between 2002 and 2017, I was seeing patients with chronic pain individually and doing psychological evaluations with them. I think it’s important to understand that chronic pain itself is a very — it can be very isolating for people. Because it is not seen, because it is invisible, it is often not understood, acknowledged, and in some cases even believed, so living with chronic pain itself can be very isolating.
In 2018, I led an effort that involved a lot of colleagues from multiple countries. This was an international stakeholder community of pain experts and leaders. We were calling for urgent action on forced opioid tapering, the abandonment of patient care within the context of long-term opioid use. This effort came about because of multiple letters that I was receiving, that colleagues were receiving, that we were hearing about in the press of patients who were undergoing extreme and harmful circumstances of rapid and forced opioid tapering circumstances, where this was being mandated regardless of the consequences.
Since that time I have been advocating for patients with chronic pain to have best care.
If It Can Happen to a Doctor, What About Patients?
One colleague, her story comes to mind. It’s not a story about her but of her despair and plight in trying to access pain care for her son who is a young adult, and her despair in seeing her son suffering with his pain, and having an immense difficulty accessing services and even basic prescriptions that he needs on a daily basis. She would describe multiple experiences of care abandonment that left her son in crisis and her role in both trying to comfort her son and help with his distress, while simultaneously advocating for him in the community to try and connect him with the services he needed, ultimately having to seek resources out of the state for her son. After months of horrifying circumstances involving multiple surgeries, lack of care and analgesia, and much strife, and traveling, and hunting, she did secure care with a physician and he is now stable in a stable situation, so that’s excellent news.
It’s an amazing situation that this is an individual who has a doctoral degree and is well-versed in medical parlance and the systems and the insurance, and to see and hear her stories of the complexity and the difficulties. We talk about it amongst colleagues, that if this is what’s happening when it’s somebody who has all the resources available to them, what’s happening to people who are far less educated, who have far fewer resources and connections?
There is a class divide, unquestioningly, and it is deeply uncomfortable to reflect upon that and to realize, and to really deeply understand the impact of these differences in classes and what’s available. Because even people who are upper socioeconomic status or who have resources and connections, even they often struggle to receive care within their family. Also, things change quickly too and I think that’s what we need to remember because every patient who comes to me with a story of abandonment, in the months prior they were stable too. I think that’s the truth that leaves many people on edge that patients describe to me, feeling that any day that it could be them. Any day, they could be told that their doctor is no longer going to provide this type of care for them or that there’s just going to be a dramatic alteration regardless of their circumstances.
At the Mercy of the System
In all cases, I felt there was a common thread of being at the mercy of a system where one felt invisible. People were prescribed opioids as part of their pain treatment plan, but they would describe that they were being treated as drug users simply for following their care plan and for taking their medications as prescribed, but there was a shift in how they were perceived by the medical system and how they were being treated.
People would describe feeling abandoned by their doctors, and others reported feeling abandoned by the system itself, the medical system, and for some people it was both. Other people wanted to stop taking opioids, but they weren’t offered a way to do so, and they would report being forgotten, left with prescriptions and no way to stop them, and they would come to me for help with tapering. It’s not that physicians are sitting around in their offices trying to change people’s prescriptions, necessarily. It’s that the physicians in these cases are being forced to then force the patient, so it’s coming from higher up. More recently the decision to change prescribing is often being driven at the organizational level, at the state level, or certain physicians may have been told by the DEA that they simply cannot prescribe, and so the fallout from the pressure is being placed on the physician.
Dying in Pain
It is frightening to think about a future where — or for some people it’s even the present — there’s not basic analgesia provided at the point at which someone needs it, so palliative care, people who are dying in pain because of certain restrictions that are placed arbitrarily. I think these are absolutely tragic stories and those register deeply. I’ve had conversations with colleagues about it, absolutely. It’s like, “Where is the end? At what point does compassionate care come in, and just sanity, into the equation?”
The physician holds the care relationship and to have a blanket restriction placed on all patients stands in violation of basic principles of medical care. It’s frankly absurd. In my role as a psychologist, I have the luxury of being given an amount of time with people where I can simply listen and receive and validate them, and recognizing that this is truly a luxury in our medical system.
I have observed repeatedly, working with people who are experiencing grief and feelings of abandonment, and with sitting with them, listening intently, receiving them unconditionally and supporting them through a crisis of feeling or being abandoned. That, in and of itself, is healing to the individual who truly is feeling rejected by the system, where they often feel, or actually have, little or no recourse. My work focuses on advocacy for individualized pain care that focuses on the person and what that person needs versus opposing mandates based on doses or medications for a population, which makes no sense because there is so much diversity among people and their different pain conditions and circumstances. What we really need is individualized care and that is what my work focuses on. It’s what my advocacy efforts focus on.
Other stories from the Abandoned episode include “People Died. The Establishment Played Games” and “The System Failed Us”
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Source: MedicalNewsToday.com
