Posts Tagged ‘medical model’
Experts
As I was driving to a meeting last week for the Dual-Eligible Demonstration Project, a man stood out near the stoplight. He was holding a sign, “I do not drink. I had a stroke and am homeless.” I nearly picked him up and took him to the meeting.
His story–the story reported on his sign–is far from unusual in my world. But it is unusual enough that the experts who treat strokes as an acute medical event still fail to understand the repercussions of health conditions on everything else in life–and likewise fail to understand the effects of everything else in life upon health conditions.
I am not talking about behaviors that are within an individual’s control; I am referring more to the chronic situations that come about first because of that acute medical event, and the difficulty not so much with the illness or accident itself as with the struggles in day-to-day life afterward.
The vision of projects that attempt to coordinate care for dual-eligible Medicare and Medicaid recipients makes a lot of sense, and could allow for the flexibility that can make an enormous in the quality of life of those individuals, and hence, in health outcomes.
But flexibility comes only when there is an understanding of the full picture of a person within the context of life, rather than within the context of a healthcare setting. This is where expertise of assessment comes into play, and where I fear that we are in real danger of getting tripped up by that very definition of expertise.
What is an expert? I see the established healthcare’s system respect for degrees and licenses, and see a structure that is resistant to accepting the expertise of the individual receiving treatment–except, sometimes, within the context of that treatment and the immediate needs around it.
It is not enough to share decision making, or to create a participatory system. More than that, the entire system needs to be flipped where the expertise of lived experience is valued as much as the expertise in the medical field. That clinical expertise is essential, of course. But it does not outweigh the practical aspects of life and the necessity of understanding how life changes all around when an individual’s health changes–and what can be done in all respects to improve the situation. We joke about a school of hard knocks, but the degrees we receive from life are just as valuable as those that we receive from studies within a well-established hierarchical system.
Part of the difficulty comes, too, from the harm that has come from years of medical arrogance. There have always been caring, wonderful medical professionals, and there always will be. In spite of any individuals, though, the power dynamic has allowed an enormous abuse, particular of people with disabilities, whose medical status amounts on a systemic basis to a problem either to cure or to ignore. The harm of this attitude is that mistrust of that system leads to mistrust of individuals–particularly in times of change where the powerful name the game–and where that power base remains so heavily weighted within the existing paradigm. More mistrust leads to defensive tactics, and to cynicism instead of listening, understanding, and working together.
Can the paradigm really shift in favor of the consumer in this new age of healthcare? I don’t know. I see vastly different attitudes about health and medicine in general in many other countries, where a broader range of health seems to be covered. But culturally those attitudes are so enormously different from the way we approach life here in the United States.. and we may not want to pay the taxes necessary to support such systems, even if we could accept that level of overt governmental control over our healthcare. But more flexibility? is it possible? Can we shift our system of medical care to one of health care, of care for people, that works, that truly supports the value of life, as is lived, itself? Time will tell.
Control
Later this week, I have to go to a meeting to discuss a training module created on the topic of “consumer control”. Now, for those of us in the disability world, these words have powerful meaning: a tenet of independent living, of disability rights, of civil rights across the board, when you get right down to it. And yet, I am anticipating more attempts once more to water down the rhetoric, to emphasize the progress that has been made in “person-centered” service delivery, in “consumer-directed” service delivery, in shared decision making. And while these attempts to include the consumer/patient/client in the discussion about care and services are better than total exclusion of the person, they are still missing the point.
In my work, the number one complaint I hear from people when they refuse services that are available to them is that the services were somehow intrusive, inappropriate or judgmental. I hear that they are not what the person wanted or perhaps even needed, but that someone–a professional of some sort–convinced a person to accept help, or care–or it was just done for (to) them.
One person determining “what is best” for another person is not an exercise of equality in the least. In fact, as the person–or family in the case of a child–is seen as the receiver of something, rather than as the subject of a service-related relationship, the relationship is skewed from the start. Is it any wonder that people do not follow service plans when they are not the ones who are in charge of them?
Loss of control is perhaps the most frightening part about the aging process, and also within the world of illness and disability, if for different reasons. We seem to have a desire as a society to protect those who do not fit the stereotype of what we deem fit and strong. A number alone–a number of years–can determine whether a person is clumsy, or a fall risk. It can determine whether someone is categorically entitled to certain services, like meals on wheels. It seems to invite sudden permission to resort to diminutives when addressing a person whose name we do not know. And for people with disabilities, if the notion does not invite pity, it may well invite fear, as we avoid the issue of difference entirely simply by not considering access of all sorts, by not even entertaining the possibility of a wheelchair, or a seizure, or an inability to speak.
But we as professionals may well envision our perfect worlds for people. We may know the most effective treatments, and the best living conditions for a certain set of circumstances. And actually, we may have some great ideas based on the experience we have and the things we have seen. But always, always, our consumers are the best teachers we have. It is necessary not only to listen, but to relinquish the reins to them. We work not with the people we serve, but for them. Really. It matters that much. The medical care we give, the services we set up, everything we do should start and end with the same sort of relationship I would expect if I walked into an Apple store, and told the worker what I need my I-Pad to do for me. And we should deliver–and if we cannot, we should go back and figure out how to respond to the need we were unable to fulfill.
I talk to a lot of people who are very good at creating their own solutions that really do meet their needs. A man I met a few weeks ago was in a quandary when he needed a doctor’s signature to complete a transportation form. He had stopped seeing the doctor, because he had pooh-poohed the man’s choice of a treatment that was not what the doctor had recommended–even though that treatment had been effective in the end. A woman sat in a nursing home for months, complaining endlessly to whomever would listen, that she did not want to be there, that she wanted to go home. And yet, over and over she had been told that she was too weak, that she could not manage on her own, that she was not safe. This sort of prison must be the ultimate loss of control in our society. (Now she is home, safe.)
I had a dream not so long ago that prescriptions for medicationss were a thing of the past. All medicines were legal, and available, and we just took them if we thought we needed them, consulted with professionals if we thought we needed to. I know it sounds medieval, and reckless to some, but I wonder as the world becomes wilder, as we self-publish and grow, if we cannot reinvent the sort of control we have as individuals to determine our own needs, if we cannot let go of our own (perhaps unconscious) desire to “help” others (which is another word for controlling them), if we cannot see fit to trust–truly–in the ability of those whose abilities are different from our own to make decisions about their own lives.
Only Anecdotal 