In the last decade, a new problem has come into focus, illustrated by the posts over the last 4 weeks.
Families and communities have traditionally provided the overwhelming bulk of care for relatives whether they were mentally infirm, elderly and dementing, younger with learning disabilities or suffering from physical illness. The impetus to care for a relative supported the creation of modern health services to help deliver the best possible care.
How these services have functioned has sometimes been compromised by abuses on the part of a small minority of families or in the institutions set up to deliver care. These abuses need to be recognized but should never obscure the primary reality which is that families have by far the greatest incentive to secure the best possible outcome for a family member.
There has always been a need to be aware that family input to care may be malign, but the tendency to regard families who question things as suspect should be the exception, and not the norm it has become, symbolized by an astonishing push to diagnose awkward relatives as having Munchausen’s Syndrome by Proxy.
Just as with all medicines, all laws can do harm; the art lies in knowing when to apply them and it is an even greater art to know when not to apply them. Even the best intentioned of interventions can harm. Our current arrangements were born in an era of therapeutic optimism. When arrangements are born in this way, the eagerness to bring benefits may make medical, legal and government parties to the intervention susceptible to missing the harms that can arise.
A dangerous lacuna has emerged. It is not confined to but it comes most clearly into view when considering the immediate consequences of the adverse effects of prescription only psychotropic drugs which can produce the behaviors that treatment is supposed to remedy.
At a time when many still cannot access services, when many are in prison when they should be in hospital, we now paradoxically face a growing need to provide an exit route from healthcare for people who are rendered mentally infirm or alienated by the effects of treatment or held hostage by services supposed to support them.
Once in healthcare systems, the voices of professionals now trump those of others who know the person better – a child, parent or partner. This is unprecedented. Review tribunals, advocacy and other mechanisms put in place to ensure that patients get care that is the least restrictive possible, in many instances simply do not work as intended.
The recent US Helping Families in Mental Health Crisis Act (HR 3717), for instance, is predicated on a potential positive role families can have in a family member’s recovery journey. It claims to seek to allow families greater access to the dialogue with their family member’s professional care givers. But it also sets up new mechanisms for forcing the use of medications on unwilling recipients, mostly by edict from mental health court judges who have little or no education in psychiatry. This is outpatient detention (community treatment orders).
Against this background, and with the cases posted in mind, we need formal recognition that:
- eliciting consent to treatment is a more complex process than is often recognized
- apparent incapacity should never mean disagreement with a healthcare professional
- risk management is biased toward locating risks in the person rather the system, when the greatest source of risks lies in the system – such as the lack of access to clinical trial data
- people need to be supported to embrace the risks they decide to take
- patients whose “rights” are suspended must be treated as though their most passionate advocate were present to observe all that is happening them
- independent mechanisms need to be put in place to monitor the rates at which people are being injured by current systems of care
- advance directives and named person status must mean something
- detained patients should be provided with a copy of every medical report produced on them as a matter of course
- patients and families who speak out have legitimate fears of reprisals and we need a system to manage this.
Continued in Medical Kidnap: Get Out of Jail Free Report.