I am at a crossroads. I know that I cannot go any further in my “profession” and have come to acknowledge that my evolving thoughts do not fit within the confines of a practice limited in the focus of its definition. I am a former nurse and disability advocate, dually credentialed as a mental health and addiction practitioner. I am finding myself squeezed out of the evolving dialogue because of an education and training that appreciates the nature of a multiplicity of issues confronting people in recovery.
The Problem with the Scientific Method
Science breaks things down to understand their function. That is the focus of the reductionist approach. The focus insists on looking at ALL phenomena through a microscope. While that might help us understand the components of a particular aspect of, let’s say, a system, a disease, or, a social phenomenon, it does not do anything to help us understand the relationships between the multiple variables which give rise to the human physical, emotional and social experience, nor does it give us an appreciation of the interplay of these three on the functioning of a living being. Because we continue to fund “professionals” to be expert on the components of systems and their function while neglecting the importance of their interaction, we are complicit in the undermining of human existence. We have come to judge symptoms and behaviors we cannot understand for lack of appropriate focus and interest. Yet many of us feel compelled to act on erroneous judgments and intervene in ways that deprive people of their most basic civil rights; support of their families and loved ones, their freedom to make informed choices and the right of self-determination, in essence, their very lives!
Reducing human problems to encourage funding over effective intervention
I remember being approached by an addict who was then a member of the local adult felony drug court. “Are you an addict”, he asked me as he sized me up.
“I may not be an addict, but I have done my own recovery” I replied with all sincerity. He seemed to relax a little but seemed puzzled by my response.
“I suffer from Posttraumatic Stress Disorder,” I clarified, “I have triggers much like you do. When I am triggered, I revert to a panic response, much like your cravings do to you. I have learned to limit my exposure to triggers, disengage from unhealthy situations so that I am not further harmed and de-escalate my triggered responses so that I can function. These are all skills you can develop and they will help you stay clean”.
My approach gained credibility with clients I served but the political and financial nature of my placement within a chemical dependency agency limited the focus of treatment to an “addiction only” priority. As my credibility increased within the court, questions emerged concerning my interventions and my work was conveniently articulated as being solely applicable for “mental health” clientele. The competition for funding and preference in contracts makes addiction and mental health separate entities pitted against each other for preferential consideration. I was hired for my mental health training or my substance abuse and addiction specialty, thus my holistic perspective was completely discounted. To this day when I interview for mental health positions, my placement within substance related programs causes me to be seen as being an “addiction professional”. The holistic nature of my expertise is being ignored by both streams of therapeutic approaches.
Clients continue to receive less than optimal services for complex issues that have been broken down into funding streams so fractured from each other as to make the service meaningless. I have witnessed drug court clients sent to prison for mental health conditions that have not been addressed within treatment and severely mentally ill clients fail to address their mental health symptoms due to an addiction that repeatedly them.
Fractured medical treatment:a lesson of the dangers of reductionism and protectionism
My father had multiple physical ailments. He suffered from Diverticulosis, Raynauds Disease, high blood pressure, and colon polyps. He had suffered a mini stroke from over extending himself cleaning the basement floor in 95 degree heat because “it had to get done”. This behavioral manifestation was a clear indication of the Obsessive Compulsive nature of his personality that I was raised with. I distinctly remember him standing in front of the stove every time that the family was about to leave the house. “One, two, three, four”, he would count slowly and methodically looking first at one burner and then the next in a clockwise direction. He would repeat the sequence 5 times before including the number 5 which designated a check of the oven. He neglected his mental health all his life seemingly more prepared to deal with the mounting physical conditions that resulted.
Never diagnosed, my father pretended that he did not have mental health symptoms despite the days that I remember highs when my father would sing, dance and act silly. As a little girl he would ask me to stand on his feet and he would take my arms and dance around the kitchen. I hated the highs knowing the plummet into the opposite was just around the corner. I never knew when it would come, just that it would. Those were times filled by grumpiness and fits of anger. On nights that I would come home from swim team practice hungry, thirsty and tired, he would take my food away and taunt me. He would react aggressively to my objections and physically run me into the wall when I tried to get away from him. He would often withdrawal and work in the basement for long hours. He would not even discuss mental health issues and refused to do anything to stop the vacillation back and forth. He seemed reticent to distance himself and his emerging mental health symptoms from his own mother, a woman he called “Crazy Lil”. I am sure both he and his mother suffered from Bipolar Disorder.
Years later when my adoptive father was declining, he had undergone a colonoscopy to snip some of the polyps that occasionally occurred along his colon. Before he had gone in, his Coumadin (an anticoagulant) used to avert stroke or heart attack from a dislodged clot, was stopped. The rationale was that the action would promote a better healing post-op by allowing him to effectively clot.
After the surgery he began walking around his neighborhood again. One day the walk was taking exceedingly too long. When my adoptive mother saw him hunched over clutching his chest as he approached the house, she sprang into action. He was immediately admitted to the local hospital where he was monitored. Because his symptoms were not responding, he was transferred to an inner city hospital. His Coumadin was reintroduced and its dosage upped. To my knowledge there was no conversation between the specialist who had performed the polyp surgery and his cardiologist who was monitoring his cardiac status. As a result, my adoptive father began hemorrhaging internally. Immediately clotting factor was introduced. He had a subsequent heart attack. He started going into respiratory distress since his heart was compromised. An order was made to ventilate him since his respirations were compromised and his oxygen saturation dropped. Like many people who are prone to mental health conditions, his gag reflex was over sensitive so he was prone to choking. Intubating (inserting the breathing tube) caused him to vomit from his violent choking. They continued to struggle to get the bleeding contained while supporting his cardiac function, two very opposing goals since the introduction of clotting agents precipitated another heart attack. They vacillated back and forth between the two approaches. At that point he became comatose and he spiked a fever. He had turned septic, that is, his system was poisoned by the vomit he had aspirated. It was shortly after that my adoptive father expired.
The specialists indicated here are: Psychiatrist, Cardiologist, Proctologist, Pulmonary specialist, and Hematologist. Not one of them specializes in understanding how their “professional opinion” will affect the status of the others, yet, each one affects the other and together creates the neglect indicated in the condition of the patient in question, who in this case was dead!
The lesson about status and power in the abdication of patient and client rights
My fiancé has multiple health problems. He has been subject to poor treatment by physicians on a regular basis. When I met him he was in kidney failure and had dialysis 3x/week. His dry weight, meaning the weight he was when ALL extra fluid was removed from his circulation was 125 kg. The technicians at the center were instructed to make sure that they always took off enough fluid to hit his dry weight number. The problem is that technicians have very little training and, quite frankly, are not trained to think, just follow directions. These technicians do not individualize their treatment; that is, account for body mass gain, seasonal weight gain, heat of the day, perspiration expected, activity level etc. They would take off sometimes 3.5 kg in one sitting. 3.5 kg is 7 pounds of fluid!!! Cedric was repeatedly suffering dizziness and hypotension to the point of collapse. He would go home and sleep the entire remainder of the day from the tremendous stress that it put on his body. One half of his life was essentially being wasted.
I began to strongly object to the technicians removing so much fluid and we were lucky to find a technician who backed our decision. It was through her encouragement we became even more convinced that we were doing the right thing. She was an important factor in his empowerment and the developing voice that he was beginning to have in his care. The Northwest Kidney Center removed her from providing Cedric’s care as a result.
Since he transferred north, he has been receiving much better care. Despite the ability that he now has to express his wishes, none of the healthcare team WILL openly voice objections to care that he has received elsewhere, even when that care has jeopardized Cedric’s life.
The appearance of melanoma: a process of misinformed healthcare delivery and the lack of “informed consent”
Cedric is African American and has spent his whole life in the Pacific Northwest. He had been placed on Enalapril in 2007 for blood pressure management after suffering Congestive Heart Failure as a result of his failing kidney function.
In 2010 he showed his primary physician a lesion his back just below his armpit. She thought nothing of it. In 2012 when I met him, I told him about the lesion on his back as well and suggested that we keep an eye on it. Later that year, he was being worked up for a kidney transplant. Because he was a below the knee amputee, the cardiologist who wanted to do a stress test on his heart, told him that he would be doing a “chemical stress test” against Cedric’s open objections. He was injected with a radioactive isotope. He was also subject to a CAT scan and an MRI. He did blood work and was declared “cancer free” in November 2012.
Getting up early one December morning I told him not to move and started to palpate what was a more nodular and puffy side to the lesion on his back. All of a sudden, it appeared to be growing at an alarming rate. We got the name of a dermatologist and were seen…
“Ninety nine point nine percent of these are not cancerous,” he tried to reassure us, “I will schedule you to come in and take a biopsy”.
“Can’t you take it now?” I asked him.
“Well, I guess,” he said as he turned Cedric’s back away from me. When Cedric turned his back to me again it was clear that the dermatologist had just taken a small part of the lesion, leaving most of it intact.
“Aren’t you going to take the whole thing?”
“No, we can take the rest of it at another occasion”.
The phone rang the next day and the dermatologist himself was on the phone. “The biopsy came back positive. I am going to make a referral to the University of Washington. They have a doctor who specializes with melanomas”.Stunned, Cedric turned to tell me the news.
“So, they just left the lesion on your back to possibly spread?”
“He told me that the doctor in Seattle was better prepared to do the surgery” he told me with a faraway look.
The scheduled meeting was almost a month later. I tried to have the dermatologist agree to take the lesion off but he refused to do so.
“How does that make sense when cancer spreads?” I asked Cedric, “…and what does it do when he performs a biopsy only on one portion and causes bleeding? Doesn’t that introduce cancer cells into the blood stream?”
The appointment at the University of Washington was a consult. They would not even consider taking the lesion off. A resident reported the findings of the pathology report that was done up north without ever seeing the pathology report itself.
Small talk ensued to lighten the mood as the surgeon walked in the room after almost an hour wait. “That is an interesting accent you have” I quipped.
“Well,” he said, “I am from South Africa.” I was not aware of how important that fact would become as our interaction continued…
“Well, that is odd” the surgeon said looking at the lesion, “I have never seen a melanoma that was so warty looking,” he added as if to no one in particular.
“Can you please tell me how an African American as dark as Cedric who grows up in Seattle develops skin cancer?”
“That is rare” the doctor admitted.
“How does Cedric get passed as cancer free in November and develop a melanoma within one month?”
“He was worked up for a kidney transplant, you would have thought that they would have noticed this lesion on his back and had it checked. Then without looking at the lesion they repeatedly dose him with radioactivity…. Wha la… I find the lesion on his back, once appearing dormant, now growing at an alarming rate”.
Cedric chimed in, “Goddamn it, can’t you just get this thing off my back.”
“No,” the physician told him in a patronizing tone patting his shoulder, “watch your language”.
“The longer this thing sits here, the greater the chance it will spread. Don’t you get that?” Cedric implored him.
“Oh, I will have to do much more than just take off the lesion. What we will do is have you come in and inject the melanoma with radioactivity…”
I couldn’t believe what I was hearing. Didn’t he hear anything I had said?
“…then we will track the radioactivity through watching it illuminate those lymph nodes that have been draining the site. We will remove those nodes and dissect them to see how much cancer is present. We will then inject dye to the surrounding area and take the tissues that show color”.
“The lesion looks very different from one side to the other. Doesn’t that indicate that the lesion might just be cancerous on one side?” I asked him.
“They reported that the lesion was 1.7 millimeters in depth but I think it probably is as much as 7 millimeters. In fact it is probably 7 millimeters for sure” he replied as if that answered the question.
“Don’t you know from the slides taken?” I asked him.
“Oh,” the surgeon told me with all sincerity, “I haven’t seen the slides”.
“Then how can you make the diagnosis? And we are setting him up for surgery?” I looked over to see Cedric squirming in his seat, the physician’s hand tapping him as if he were an inconsolable child.
“We will schedule you as soon as possible” he told me, “we don’t want to waste any time”.
I looked at Cedric who appeared like a deer caught in headlights. “I think we need some time to consider everything” I responded.
“No,” Cedric said reluctantly, “schedule it.”
As the surgeon left the room, Cedric turned to me with tears in his eye, “I don’t want to do this but I have to”.
When we got home, I sprang into action getting as much information as I could regarding Cedric’s medications and skin cancer, specifically melanoma. Remember the Enalapril? I came across a study that tracked people who had been on the drug over a prolonged period of time. Guess what? Some of the older patients had developed…. skin cancer, specifically melanoma! I approached his kidney physican and told him that I wanted his medication changed.
He looked at me confused, “I wasn’t the one who put him on that medication was I?”
“No,” I reassured him.
“We need to get him off that right away. Bring me the bottle and I will call in another prescription as soon as possible for you to pick up…,”
I also came across information discussing the benefit of using high concentrated THC oil for the treatment of cancer. Come to find out, there were also scholarly articles that had been suggesting the importance of cannabinoids in the treatment of cancer going back to 2003 http://www.jci.org/articles/view/37948.
The day of the surgery, I was in training and was not able to be by Cedric’s side. He checked in at 9am with surgery scheduled for 11am. He was injected with radioactivity at 11am and was not in surgery until 1pm.
“I want to see slides and pictures so I understand what is happening to me”. Cedric reported saying to the surgeon.
“That is just not feasible” the surgeon reportedly replied.
“Then how can anyone give informed consent if they cannot understand the implications of what is being seen?” I asked him after it was all done.
“He told me that there is a 15-30% chance of this recurring”. That information was echoed by my son who accompanied Cedric in my absence.
Ten minutes after waking, Cedric was ushered out of the hospital with a sheet of post-op instructions without ever seeing the surgeon again. Questions were avoided that way, I guess!
The follow-up was inadvertently scheduled for a day that Cedric was in dialysis despite the fact that the staff of the University of Washington knew his other medical obligations… We met a resident for the review 2 weeks later. He was apologetic with the delivery of the news that they had indeed found cancer in the lymph nodes but that it appeared that they had gotten all of the cancer.
“You are facing three options: 1) Wait and see if there is a recurrence 2) You can begin chemotherapy, or 3) Start radiation treatments”
“If we got the cancer, why would we want to subject Cedric to these treatments?” I asked him, “Do we know how many of the nodes were cancerous? What was the percentage of cancer found within each one?”
The resident excused himself to ask the surgeon my questions. He came back just briefly to hand me the pathology report which I read carefully….
Indeed Cedric had a rare melanoma that was slow growing and generally has been implicated in a significant amount of lymph node involvement with other cases. Called “pigment synthesizing melanoma” it resembles a melanoma seen often in the grey horse. There is very little information on the progression of the melanoma’s growth over 10 years though it was not clear if that was due to the fact that intervention led to remission or not.
When the resident returned the information had drastically changed. We stand by our assertion of these events because we can NOT substantiate ANY of the surgeon’s claims, never seeing the pathology slides, the evidence of the lymph node dissection… ANYTHING. “Four nodes were involved and two were cancerous. The doctor wants to schedule you for a follow-up surgery to go in and remove more lymph nodes to make sure that they are not cancerous”.
“How does that make sense to remove more of Cedric’s lymphatic system, a system that is there to protect him from the very cancer that we just removed? And he is immunosuppressed as a kidney patient? After all you removed 4 nodes and only 2 were cancerous. Do we even know what percentage of the lymph nodes were indeed cancerous?”
We declined the surgery.
When we got back home we submitted a complaint about our treatment and the lack of information provided. The physician called. The questions that I asked regarding what had transpired and what the implications of the findings were ended up being ignored as if I was not even present. I got up and walked away in disgust. Cedric tells me that the doctor kept insisting that Cedric was “out of control” when it was clear that it was the physician who was not in control of his own emotions. Without any more information, Cedric ended the conversation politely.
The complaints we have lodged with other professionals about Cedric’s care go nowhere! Clearly this surgeon’s prestige supersedes the treatment that he gives his patients while his expertise elevates him beyond reproach! Legally he is responsible for providing accessible information to his patients so that they can give him “informed consent” to perform surgery and follow-up care. He does not, nor does he have any intention to do so.
Applying relevant lessons to social services
I have arrived at a similar conclusion about my place within my own “profession”. I am expected to provide mental health or addiction services without consideration of the holistic needs of the person, couple or family I am working with. When I provide dual services, my efforts threaten the staff and administrators through the creation of trusting bonds with clients that they are paid to serve. They discount my interventions as only being appropriate for “that other approach” and insist on defining client behaviors as being centered in their own specialty. Agencies, like doctors, are politically wired to be more concerned about maintaining their funding streams than doing what is best for clients that they serve. I cannot be defined solely through one or the other and so threaten the funding of both.
What became clear to me in maneuvering through my line of work is that the number 1 producer of stress, anxiety and depression has been the understanding that adherence to my thoughts, my ideas and my approach for the good of the people I serve has made me a pariah within the political structure of a social and human service delivery system modeled by reduction of client needs into categories of ailments and conditions in need of amelioration through rehabilitation, and funding resources.
If we focus on just SYMPTOMS that result from more and more people who cannot fit into our ever shrinking focus, divvying the physical, emotional and behavioral manifestations into categories and diagnoses, we neglect the real understanding of how our socially created concepts affect the quality of living we are forced to endure. We miss the myriad of variables that influence human experience by inflicting the focus of an artificially derived lens called “the scientific method”.
Within psychological and sociological experiments, researchers are aware of a phenomenon called, Observer Bias: “This refers to the cultural assumptions which all researchers bring to their work and which help determine their method of research and their observations. It has been argued by some that all enquiry (including ‘pure’ science) is simply a reflection of such biases”. http://www.encyclopedia.com/doc/1O88-observerbias.html Since Science has been touted as the methodology of choice in evaluation, it is important to understand its appropriate applications and its limits.
Social interaction etiquette is biased towards elite people who are put in places of judgment to uphold the status quo. We defer to those people because of their station often without consideration of the merit of their contributions, qualifications, or intelligence. The people in these positions get away with being ill informed, narcissistic, disrespectful, bigoted, hateful, and as a result, dangerous (See Stanley Milgram “Obedience to Authority” http://youtu.be/yr5cjyokVUs and Philip Zimbardo’s “Stanford Prison Experiment” https://www.youtube.com/watch?v=L_LKzEqlPto)
Summing it up
Truth is not in the sole possession of “professionals” as much as they would have you believe otherwise. Empowerment of self through attainment of personal knowledge begins a journey that can lead to “Strategic Positioning” in the face of powerful forces and “professionals” who function within a limited scope of expertise and biased focus. The beginning lies within you.