Wound care appointments create significant angst. News tends to fall into two categories--good or bad. This week the news was good. My wound is healing. Relieving pressure, i.e. not sitting, is without question a successful method of physically healing a wound. Physically healing a wound however involves much more than one's skin and underlying tissue. The mental toll pressure relief takes is devastating. Depression is a natural response to being socially isolated and bed bound. Depression leads to disrupted sleep patterns, loss of appetite, and for me, jags of tears when alone. Being bed bound leads to a loss of strength and physical fitness. Surely these areas of concern should be of paramount importance to health care professionals in wound care. This is simply not the case and I find this deeply objectionable. No wound care program has ever addressed these issues in my experience. I was forcibly reminded of this fact yet again. I stated briefly and clearly to the wound care doctor that I was depressed. Indeed, I stated I was clinically depressed. The wound care nurse who had my electronic chart open checked off the box "depressed". That was the end of the conversation. No referral for mental health care was made. Such a referral must come from an internist. The physician knows I have no internist. An awkward silence ensued. I got the message. Depression, loss of appetite, hydration, physical fitness, and strength are beyond wound care's realm of expertise.
Wound care focus on a wound in a social vacuum is and always has been a shocking failure to me. I have had far too many wounds in the last 40 years. In that time wound care dressings and treatment have evolved and advanced but the lack of empathy displayed on the part of wound care professionals is heart breaking and dare I say deadly. Driving home from my appointment I thought long and hard about a remarkable essay I read by Joel Reynolds in the AMA Journal of Ethics. In "Three Things Clinicians Should Know About Disability" Reynolds outlined a set of responsibilities health care professionals should uphold and made three concrete recommendations for clinicians to institute when dealing with patients who have a disability. I found Reynolds words insightful and incredibly helpful. He did not lash out as I have against ableism. He did however write about rampant ableism in health care and drew heavily on decades of work produced by disability studies scholars and philosophers. The mere fact his essay appeared in an AMA journal is a testament to the progress made by disability studies scholars in the broadest sense of the term. This is heartening in the extreme. Yet this progress has not filtered into clinical practice. People with a disability are routinely treated badly by health care professionals--just two weeks ago I was continually referred by staff in radiology as"wheelchair". Bigotry and profiling are alive and well in institutions nation wide.
Reynolds maintains health care professionals, when dealing with people who have a disability, should be aware of the following:
1. Quality of life. Health care professionals, like much of the general public, assume the quality of life for people with a disability is poor. Study after study has amply proven this assumption is incorrect yet this myth is commonplace.
2. The problem of ableism. Health care professionals see the normal or typical body as the ideal. They assume all people want to function and appear to be normal. Any evidence to the contrary is suspect. Thus a patient with a disability who is content with an atypical body calls assumed beliefs into question and is thus a threat to well established practices. The assumption made is that all humans desire the ability to walk, see, and hear.
3. Distinction between disability and illness/disease. Because ableism is rampant many health professionals confuse disability and disease as being one in the same. This is wrong and leads to gross miscommunication and erroneous conclusions.
Building off this knowledge base Reynolds argues health care professionals need to adopt a holistic view of disability and treat patients who happen to have a disability differently. He suggests the following:
1. Clinicians have a responsibility to develop disability humility.
2. Clinicians have responsibilities to communicate better with and about patients with disabilities.
3. Clinicians have responsibilities to recognize the authority of people with disabilities as experts about their own lives and communities and to elevate their voices.
Based on my experience with wound care professionals, they fail miserably on all three of Reynold's suggestions. When accessing health care I communicate in a clear and direct manner yet virtually no health care professionals listen or make an effort to understand disability and the degree to which institutions are physically inaccessible and hostile to disabled people. I have not met any clinicians who acknowledge much less respect the fact I have managed to avoid most secondary complications associated with paralysis for over four decades. What clinicians see first and foremost is pathology. They seem unable or unwilling to listen and I suspect are fearful of complex patients. Complex here means a disabled body that requires atypical care, a different approach to health care, and a level of respect or agency not usually given to a patient.
Reynolds notion of disability humility is fascinating because it has the potential to fundamentally change the way health care providers perceive disability. If disability has taught me anything it is humility and with that humility comes wisdom or a different way of knowing. From the Latin, the word humilis, means low, and we wheelchair users are low in comparison to bipeds and low in social standing. As a group we are poor, too often receive an inadequate education, are unemployed in large numbers, and within the health care professions our presence is rare if not entirely absent. These grim facts remain largely unknown because health care professionals are not exposed to disability studies and disability history. At best health care workers are required to know what the medical model and social model of disability is. Like the checked box, depression, on my chart in wound care, health care workers know nothing about disability beyond the fact two models exist. Reynolds pointed out this lack of knowledge which led Hastings Center scholar Erik Parens to suggest a "binocular" view of disability--a view that fuses both the medical and social understanding of disability. Imagine if wound care professionals who correctly advise a person such as myself relieve all pressure and not sit up for more than an hour a day were forced to live their medical advice? I am not suggesting we return to the terrible disability simulations that were once popular. What I am suggesting is having health care professionals experience a dose of disability humility. Perhaps if this happened they would see more than a wound.
As I imagine it, disability humility could revolutionize health care outcomes for people with a disability. Memoirs written by people with a disability have poignantly described the battleground and inhospitable social and physical environment of hospitals across this nation. It is well past time for fundamental change. Imagine a wound care department that practiced disability humility. Rigorous support beyond the wound itself would exist. Pressure relief would remain the go to treatment but that would be accompanied by robust social and medical support. An online support group would be automatically joined upon diagnosis. An in home evaluation would be made by a nutritionist who would arrange meals that could be made quickly. A wound care nurse would help with dressings as needed. And this nurse would know the cost of dressings and inexpensive options. A Physical and Occupational therapist would do an evaluation and recommend exercises as needed. A mental health specialist would be made available at all wound care appointments and if necessary arrange home visits.
I am aware the above sounds idealistic and expensive. I would suggest a single additional staffer be added to wound care--a wound navigator if you will. This person would do the required coordination of specialists mentioned above. They would become the point person for patients to speak with. This holistic approach is all too rare in Western medical care. I am sure a hospital coordinator reading the above is either laughing at my idealism or questioning who will pay for all this. I would suggest what I outline would in the long run save a small fortune and dramatically reduce the time it takes to heal wounds. Patients from diagnosis to being healed would have an optimum diet, fitness, mental health and other social supports. No inappropriate dressings would be used to save money. Patients would return to work faster and require less time in a prone position. All involved would benefit. Wound care professionals would see their excellent medical advice complied with. Patients would not experience extreme isolation and have healing time reduced. With disrupted sleep patterns this is now what I think about at 3AM.