A few days ago, at the Orange County Mental Health Associations “Meeting of the Minds”, I attended a workshop on caretaker-patient-provider partnerships sponsored by our local NAMI. The material was very interesting and I sympathized with the panelists. Caretakers, they pointed out, can be a helpful part of the team that brings the patient to a place of recovery. They deserve to know what they can do to help the patient and this doesn’t mean that they have to know all the patient’s “dirty little secrets” as they characterized them.
But a few things struck me: First, at least a third of the panelists promulgated a “no fault” model of mental illness. This belief has been spread without challenge or acknowledgement of the studies that link the onset of mental illness to emotional abuse and bullying by NAMI. Though one speaker did allude to this, most of them adopted the model as applying in all circumstances, including their own. I can’t say for sure if they were telling the truth — I give them the benefit of the doubt — but I also know of plenty of abusive parents who use the shibboleth to hide their own history of family violence.
Second, they all wanted HIPAA laws changed through the vehicle of Murphy’s Law. I’ve spoken at length elsewhere about the problems with this proposal which include rendering the patient defenseless against abusive caretakers and the ridiculous assumption that caretakers will always have the best interests of the patient at heart. It also opens patient records to anyone who can identify her or himself as a caretaker under the law — usually by the mere fact of paying for treatment or being a blood relative. This open season on the patient isn’t going to result in better care, I believe, but merely more chaos which might lead some patients to stop receiving care so that they can protect their vital secrets. Again, this panel of caretakers assured us that all they wanted to know was how they could help the patient without knowing other facts (such as whether the patient was LGBT, for example) but Murphy’s Law makes no distinction in what they can access.Third and most seriously, there were no patients on the panel. The word “caretaker” came first in the title which may have been merely alphabetical but given the nature of the forum, it emblemized that they really didn’t see the patient as part of the team. Given that the patient is the one with the illness, it strikes me as odd that he or she should receive second billing and no voice.
There is here in Orange County a strong patient voice against too much control by caretakers. But it was not present at the Meeting of the Minds this year and barely got lip service last year. Perhaps in reaction to the national officers of NAMI seeing to it that patients had more of a voice in their organization, the local mental health advocates with any power erased our presence. Sure, they had programs about how we could care for ourselves and what the new frontiers of treatment were, but caretakers dominated the political end of the spectrum. Given the schedule, you might jump to the conclusion that patients just went along.
For the record, I am not so extreme as some when it comes to issues such as forced medication. A tiny percentage of us need that kind of intervention. But disingenuousness rules the day when the alternatives are offered. The caretaker voice was loud at the Meeting of the Minds. Though providers were represented as the strongest voices, the patients had none.
Concern for human rights alone demands that caretakers and providers listen to us. Providers, for the most part, do hear us out and strive to develop better treatments that will lead to better adherence, but caretakers strike me as thinking mostly about themselves, about the terrible embarrassment of having someone with mental illness in the family, and being disingenuous when it comes to the question of protections for the rights of patients. I think caretakers should be part of the formula for recovery, but there need to be limits. They can’t be given a license to abuse patients through access to patient records or unregulated access based on the flimsy standards of Murphy’s Law. If there is a partnership to be developed, patients must be won over and not forced.
I have met many caretakers who don’t get this simple concept. It is too much work for them and probably demands more of a change in their interpersonal skills than they are willing to create. If mental illness demands changes from the patients, so, too, it demands change from those who care from them.
Right now, the voice of the caretakers is loud and domineering. We are moving back towards a failed and expensive model of patient care. There is no certification of caretakers, no investigation of patient histories. Caretakers want unbridled control over the lives of patients and, sadly, the trend is for them to get it.