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Wednesday, April 10, 2019

Wound Care Woes

I hate wound care. These appointments have always made me anxious in the extreme. There is always the possibility for disastrous news. That news could mean immediate hospitalization, surgical debridement, or being told not to sit up for weeks or months. While I look at my wounds daily, note plural, it is impossible to get an accurate senes of how they are doing. And yes I now have more than one wound. This is very common. In not sitting up for months on end I am over compensating and putting more pressure on other areas of my body that would not normally breakdown. In the Fall I started out with a very small but deep wound on my butt. This wound has filled in and has vastly improved but now have an even worse wound on my hip. I am now five months into wound care. I have a long way to go before I am healed. An entire academic year has been lost. A trip to Europe was cancelled and I am worried.  Healing is getting harder and more laborious. I am not getting any younger and even the most minor of wounds take a long time to heal. I am most worried about my sitting time. Are my days of a cast iron ass and long work days over? Am I going to need hours a day in bed to relieve pressure on my butt? If I cannot sit up all day without my skin breaking down my quality of life will be severely impacted. It is entirely possible I will need to learn to live with repeated skin break downs. It is possible future wounds will not heal. It is a distinct possibility one of these wounds and resulting sepsis will end my life. I fear this the most. This is a grim assessment and one the wound care doctor believes is overly pessimistic. She stated people can live for many years with moderate to severe wounds.

What upsets me about wound care the most is not new: wound care professionals display no compassion, appear not to care one iota, and never provide words of encouragement. No doctor I have ever met aspired to become a wound care doctor. Health care professionals fall into wound care for a host of reasons. Based on my experience, wound care is medical back water or dead end. When I see the cardiologist the waiting room is well appointed. Cushy chairs abound, there is a fireplace in the waiting room, examination rooms are spotless, and expensive technology abounds. Visiting the cardiologist is akin to walking in a very expensive hotel where amenities abound. Wound care has none of these amenities. The waiting room where I see the wound care doctor is a wide hallway. An ancient television is on the wall tuned into a TV show that is blaring away. No one pays attention to the TV. The carpet is well worn and grimy. Chairs abound and there is no where I can comfortably sit. Examination rooms are mostly clean but antiquated. There is only one procedure room with an accessible examination table. The light in the room that could be used to brightly illuminate a wound has been broken since November. The people waiting for wound care are subject to a cattle call. I had an 11AM appointment as did at least six other people. We wound care patients are down trodden--obese people, amputees, diabetics, the paralyzed, and the occasional terminally ill patient. We are a scruffy lot. Those that use wheelchairs have battered equipment that is often filthy. Amputees have ancient prosthetics or none at all. We are all miserable and alone. No one escapes wound care without experiencing  depression. The physical and mental toll months of healing take are enormous. Many do not survive. The economic impact of wound care is devastating. I have excellent private insurance. If I needed advanced cardiac care that would potentially run into millions of dollars I would be 100% covered (no deductibles and copays). But I do not need advanced cardiac care. I need wound care and no private insurance effectively covers wound care. Sure they cover the doctor visits. My copay is $75. Since November I have seen the wound care doctor about every two weeks. That $75 copay adds up fast. The deductible for wound care is $20,000 and insurance provides severely limited coverage for wound care supplies. These supplies are astronomically expensive. If I were to use a wound vacuum, with insurance, it would cost $1,200 a week after the first $20,000. My wounds are not severe enough for a wound vacuum but my dressings are far from cheap. My dressings need to be changed daily. I use a foam island dressing and calcium alginate pad. These are very expensive products. Between November and today I have sent many many thousands of dollars on wound care supplies. People have urged me to start a go fund me campaign. I have agonized over this. Others are in far worse shape personally and financially. I just cannot do it. I will go without before I ask for money from friends. I have no relationship with my remaining family so familial support is out.

How does wound care deal with the cost of wound care supplies and its impact on patients? They don't. The doctors and wound care nurses have no idea how much the wound care supplies they use everyday cost. They know they are expensive but when quizzed they are surprised to learn the real cost. Wound care professionals listen very carefully but express no sympathy or understanding. To assuage themselves they give me two or three foam island dressings and I am sent on my way. What am I supposed do when the two day supply they kindly give me runs out? That issue is never discussed. When questioned silence ensues or vague suggestions are made. An hour from my home is a non profit organization that carries steeply discounted wound care supplies and durable medical equipment. Store hours are limited and no exact inventory is maintained. I get this. The store is run entirely through donations and volunteers. What am I to do? Wound care tells me to sit no more than 30 minutes at any one time. The trip to the non profit store requires a minimum of two hours sitting. This non profit store of durable medical goods is great in theory and I have no doubt some benefit greatly. Yet for the wound care patient accessing the store is impossible. When I detail why this suggestion is useless there is an uncomfortable silence. There are many silences when one details why suggestions made are impractical.

I do not understand wound care. The entire field is wholly focused on the wound to the exclusion of all else. Lip service is paid to nutrition. Mental health is completely ignored. I am asked at every appointment "Are you depressed?" I answer yes. The reply is "do you have any inclination for self harm?" I answer no. That is the extent of mental health assistance. Pressure relief is the begin and end all. Do not put any pressure on a wound. None. This is wound care mantra. This is solid medical advice. Pressure relief works 100% of the time. The consequences of pressure relief are never addressed. When a person does not relieve all pressure they are deemed non compliant. Wound care doctors I have spoken to estimate 90% of their patients are not compliant. Tension over pressure relief and frequency of dressing change exists between doctor and patient. In November I was deeply depressed over the state of my skin. I was not eating and the wound care doctor explained I would never heal if I did not eat. At that time she recommended I sit for no more than 10 minutes at one time. I asked her to create a meal that could be cooked, consumed, and cleaned in less than 10 minutes. Silence ensued. The most I have ever had a wound care doctor say that was remotely compassionate was that "healing a wound is tricky".

I am not the average wound care patient. I am highly educated and articulate. I am compliant in the extreme. For months on end I have severely restricted my sitting time. I have missed the entire academic year healing, my income has dropped dramatically, and wound care supplies have been frightfully expensive. I doubt the wound care doctor likes me. Frankly, I don't care. I am sure she does not believe I am as compliant as I state. I am equally sure each wound patient is deeply stigmatized. What is never questioned in wound care is why are patients not compliant. While I change my dressings daily many others cannot afford to do so. Many change dressings every other day or every third day. This greatly slows the healing process and can make wounds worse. I am a scholar so I can theoretically work anywhere. But without the ability to sit up my research on the Gang of 19 here in Denver has ground to a halt. I cannot go to the library archive  to advance my work. I am very well aware that I am in a best case scenario and far luckier than most. I have a robust network of help and my son lives nearby. What if I were teaching or what if I had a typical job that required I be an office every day? That person simply cannot follow medical advice and when the wound invariably gets worse it is the patients fault.

I have thought about wound care off and on for years. Much of wound care research is centered on the elderly who are most likely to develop a wound before or after a significant illness. Every year $10 billion dollars are spent on wound care--the vast majority of it going to elder care. I read a great deal about ethical care. We supposedly value patient preferences, beneficence, justice, decision making, respect for autonomy, and patients rights. These values are absent in wound care as I have experienced it. What is rampant is apathy. I understand apathy. I am exposed to it every time I access health care. Apathy literally means without feeling. Wound care professionals are apathetic. They have no feelings. After almost six months, I have absolutely no rapport with the wound care doctor. I have never had a rapport with a wound care professional. None of the people I have met care--they are without feeling. No need to worry about burn out or compassion fatigue. The indifference displayed by wound care professionals is hard for me to comprehend. I often wonder why did they become health care professionals? Regardless of the etiology of apathy, its impact on people such as myself is profound. I hate wound care because I know the doctor I see does not care about me or the consequences of sound medical advice given. Going to wound care ironically requires much sitting that prevents one from healing. Precious time sitting is utterly wasted from my perspective. I feel worse after wound care appointments physically and mentally. Pain control is never a source of discussion. Many times I have been told how lucky I am that paralyzed people cannot feel anything. I feel for sure. I cannot say the same about the many wound care doctors I have met. For me, neuropathic pain I experience after a debridement is felt six to eight hours after a procedure. The wound care doctor I see has no idea I experience such pain. As noted, pain is not subject to discussion. So much is not discussed at wound care that has a profound a direct impact on healing a wound. This lack of discussion results in vague comments such as wounds are tricky to heal. Exactly why wounds are tricky to heal is never addressed.

Wound care can be revolutionized to meet the needs of people with wounds. First, apathetic wound care specialists have no place in the profession. Apathy must be rooted out with vigor. Second, wound care must buy into being proactive health care professionals. They must see more than just a wound. Each and every wound must be understood in the larger social context of social supports or lackthereof.  Third, professional advocacy. Wound care patients are not compliant for a reason. Those issues must be addressed at gatherings of wound care professionals. Fourth, wound care nurses must lead the way. They are on the front line of care. Only they can end the apathy that grips the field. Only they can provide the empathy others crave when socially isolated and alone. The barriers to healing are not physical. The most significant barriers are largely social and it behooves wound care professionals to address this immediately. Even if they fail they will succeed for they will have shred the bonds of apathy.


Pat said...

I value this a lot. I’m a community nurse in Australia, have been for 11 years. My work day consists of driving from my home to about 9 clients each day, then back home. The first visits are for medications, then about 3 or 4 wound visits, the whole gamut of causes. I’d say aetiologies but I hate medical language and only use it in my performance reviews and mandatory education that is all token anyway.
I hear you.
I share your frustration with the whole wound care scene and over here it seems like we have ;
Wound clinics where only the latest trends in dressings and therapies are used,
Wound specialists who seem to survive in their positions by knowing what the latest, gold standard, most expensive therapies are and telling everyone else what to do,
Doctors who slap whatever wherever and leave the rest to the nurses and patients to sort out, and
Nurses who either do or don’t care. For those who don’t, they get visits done quick so they can have a coffee and for those who do they make the one step forward before the one step back. There are enough good ones that simple wounds generally heal, but red tape and policies get in the way of a lot of good outcomes. It's hard to be an advocate when an organisation can veto whatever you try to do right. So while the system puts people at the mercy of bureaucrats it ends up like this. And I guess that innovation in wound care is lacking as well.
I'd like to share your last post with those nurses I work with who do have hearts.
Thanks for sharing your struggle; it does effect us.

Lisa Chavez said...

Your situation is miserable, at best, and unfortunately one experienced by many. Sadly, things won't likely change for you in your lifetime, unless you win the lottery! As a former attendant for a few disabled folks and an Esthetcian of over a decade, I would love for you to get your hands on an L.E.D light to help repair things. I really like the Nuface model as it has other attachments that can aide in improving muscle tone, but any L.E.D might help to speed your recovery and could be purchased for under $200.00. The cost isn't peanuts, but could prove to be a worthy investment, especially if it gets you to Europe!
Best wishes,