Expert meeting Torture in healthcare settings (2)

Today, 14 December 2012, was absolutely a great day. I’m really proud and grateful for being funded by so many people and organizations to attend this! Thanks to Ceclie, Milan, Cayen (son of Lee) Jesse, GGzE and the Dutch organization for Family Group Conferencing "Eigen Kracht"- www.eigen-kracht.nl )
Again I lack time to summarize all of the discussions thoroughly, but I will share our session and the highlights of today, and I will review my notes later when I’m back home in the Netherlands, because I don’t want to spend all my time working here. I hardly realize that I’m in Washington DC, because I have been fully focussed on the meeting. So I guess tomorrow I need to celebrate the weekend and enjoy my time here :)

Today was the second day of the 2-day expert consultation on Torture and other Cruel, Inhuman and Degrading Treatment or Punishment (T & CIDT/P) in healthcare settings. This morning we started at 9 AM. First we heard the summaries and wrap ups of yesterdays discussions. And then we proceeded with the session on Persons with Psychosocial and Intellectual Disabilities. I was scheduled for a presentation in this session, together with 4 others.

First, Eric Rosenthal from DRI (Disability Rights International) mentioned that Unicef had done research that pointed out that about 10 million children worldwide live in institutions. The number of adults in institutions is still unknown, because it’s hard to get the data from these hidden places. Eric has visited many places, and in reality these institutions are horror. The CRPD sets new guidelines, with new fresh guidelines, such as art. 12 Legal Capacity and Supported Decision Making, and art 19 Living in the Community, which lead to a prohibition of forced treatments. There is a huge gap in the reality of rights of persons in institutions. Eric stated that segregated living in institutions is inherently discriminatory, and he questioned if free and informed consent would be possible at all in these coercive environments. The worst institution Eric ever saw was in Guatemala (really horrible, dangerous, out of control). Everyone (also staff) was terrified and agreed that it was a complete horrible and dangerous mess. But after raising the alarms, there was only a call for an upgrade of the institution, instead of a call for abolition, or a policy of no new admissions. It was said that there were no resources in this poor country to do anything else, so cleaning up the institution was perceived as ‘the best they could do’. Even though it was obvious that nobody should be in there. So ‘Torture’ was prevented because the many isolation cells were dismantled, but the segregated living is still CIDT (Cruel, Inhuman and Degrading Treatment or Punishment).

The second speaker was Hans Peterson from the SPT (UN Subcommittee on Prevention of Torture). Frankly, his speech was horrible; He said that the CRPD only applies to persons with Long Term Disabilities (months, years), but not for Short Term Crisis (days or weeks). He stated that Psychiatric Emergency Interventions are an exception to free and informed consent, because for example rejecting treatment after intoxication is a matter of life and death, so the rule on informed consent should be limited in such an emergency case. He also mentioned that there is an ‘ethical obligation’ to intervene in persons who live in another reality, such a psychosis or delirium.. And he questioned if a person with schizophrenia who attacked his mother with a knife should be punished or treated. The SPT is of opinion that forced/involuntary treatment in certain emergency situations is justified to protect a person’s health, life and behaviour. This would need safeguards: with 2 doctors, and a treatment plan, independent assessment, monitoring, the right to appeal, complain and to remedy.
Tina and I immediately noticed that these safeguards are basically the MI-principles – which became outdated since the entry into force of the UN CRPD.

The next contribution came from Dorottya Karsay (MDAC), who summarized the joint submission of WNUSP, ENUSP, IDA and MDAC, that we had prepared and sent before this meeting. Dodo emphasized the need to extent the ban on ‘prolonged seclusion and restraint for children and persons with disabilities in prisons’ into an absolute ban on seclusion and restraint, in all places of detention and health care, because there is no therapeutic value and it is a violation of international law. We should be aware that seclusion is getting new names and new forms, such as the newly developed ‘sensory support rooms’ in the Netherlands, which is a cell with a touchscreen and coloured lights. This is still solitary confinement. Also, forced treatments are always a violation of international law (CRPD art 12,14,15, 17, 19, 25) and should therefore be repealed. Article 19 calls for de-institutionalization, but we need to take into account that community based settings are no guarantee to safety. Article 12 (legal capacity) is a gate-right which allows persons to make their own decisions in life, such as where to live, with who, what to do and so on. Persons have a right to support. Guardianship and substituted decision making are forms of oppression: taking away their voice and making them invisible. This is illustrated by the fact that institutions are often hidden and far away from the community. We have a shared goal here, which is to stop torture and to respect human rights.

Tina Minkowitz was the next speaker, and she addressed that the SPT had a wrong interpretation of the CRPD. Tina had been involved in the drafting of the CRPD herself, and she emphasized that the CRPD doesn’t exclude anyone from these human rights, and disability is an evolving concept. The CRPD’s Concluding Observations are very clear and also include mental health services. Manfred Nowak (the previous Special Rapporteur) openly rejected the MI-principles, because the CRPD clearly prohibits forced interventions (A/63/175, p.64). So the SPT is stepping back in time. To allow forced treatment in ‘psychiatric emergencies’ is not acceptable. Tina quoted Nowak (A/63/175, p.47) “ Whereas a fully justified medical treatment may lead to severe pain and suffering, medical treatments of an intrusive and irreversible nature, when they lack a therapeutic purpose, or aim at correcting or alleviating a disability, may constitute torture and ill-treatment if enforced or administered without the free and informed consent of the person concerned”. Tina mentioned that fully justified medical treatment may imply pain and suffering (for example the choice to have surgery) but this is different from harmful treatment, which often have an impact on the rest of the life of the individual. It needs to be underlined that there can be no detention or compulsory treatment inside or outside the institutions. Suicide and self harm are issues of legal capacity, and danger to others is a law issue (art 12 and 14). This also means the abolition of the insanity defence. Also in prisons and forensic psychiatry persons have a right to free and informed consent to treatment. Also the administration of drugs against a persons will is a violation of international law and can be torture (Nowak SRT, A/63/175, p.63).

Then I had my presentation on alternatives to forced treatments. In the Netherlands , awareness raising and activism has lead to a national project to reduce seclusion and coercion. I gave a short overview of various sub-projects that had been started in clinical psychiatry.
Preventing escalations by improving attitude & contact, the Hospitality-concept (first impression/ 5 minutes) , abolishing house-rules (make individual appointments), early signalling and early de-escalation (prevent rather than wait for escalation).
Non-violent de-escalation techniques (Don’t fight panic with panic, don’t fight fire with gasoline, bring peace!!) , a social approach (not medical), early signalling, early de-escalation, Non Violent Resistance (non threatening approach), flexibility & creativity – to find and enable individual solutions, cooperation and consultation, with users, but also with family, friends and peers to maintain/restore contact before/during/after crisis
Evaluate & Learn to improve, by Qualitative research : user evaluation (cause of escalation and alternatives, wishes) and also intervision, reflection and case review by professionals, and also Quantitative research (registration)
The many Good practices are based on contact, cooperation, empowerment, and individual design. Bu there are also some Bad practices, which are mainly substituting and replacing forms of force, and generally have the style of “humanizing forced treatments” such as: “Humanizing confinement” by building “High care” units with “Extra Secured Rooms” , “Sensory Support Rooms” (‘cells that make you happy’) ,“Humanizing fixation and restraints”: Cotton straps and belts (Swedish belt) instead of rusty chains, and also a variety of furniture designed to restrain people: such as lockable table plates, deep chairs, “Humanizing forced medication”: Second- and Third-generation anti-psychotics instead of Haloperidol, and “humanizing prison”: forensic psychiatry, which is actually a lot worse than prison.

The Right to Health is used as an excuse to justify forced treatments: which is illustrated by this quote from care-professionals: “untreated psychosis can lead to altering of the brain structure, so NOT administering forced medication is neglect and human right violation”. This is of course very harmful, stigmatizing and discriminatory. Repairing “dignity” is also used as an excuse, but that’s not dignity from the user perspective, but someone else’s opinion on his/her dignity.
Another excuse that’s being used is: “It’s necessary to prevent danger”, which is based on the assumption that forced treatments are effective treatments, but forced interventions do NOT increase safety, but lead to resistance, more struggle and additional trauma and mental health problems. Therefore forced interventions have got nothing to do with mental health care.
Research points out that recovery is related to having perspective, hope, social chances, being loved, having friends, social inclusion, having a meaning in life, and so on. This needs to be the scope of mental health care.
The aspect of Legal capacity is already addressed by art 12. of the CRPD.
Another common perception is: “you can’t talk with persons in psychosis or profound intellectual disabilities/ communication is useless”, but isn’t that THE worst thing that humans can do to each other.. imagine being excluded from any conversation… In my opinion this is one of the most serious human right violations.

However, the call to Abolish laws and unlock doors / and enable free and informed consent leads to a Freeze-response of authorities and care-professionals, because it sounds like anarchy to them (oversimplified Laissez faire). They can’t imagine another world – they are basically so stuck in the medical model of pity and repairing defect human beings. They have been educated and rewarded for many years, it’s in the care-culture. And also the laws on dealing with acute mental health crisis are only about using force, which basically makes it illegal to do anything else outside the law / guidelines. This is a problem for enabling change of course.
There is a need for other models, and WE, users/survivors and our allies, need to develop that, because ONLY WE have the expertise. (and I’m not going to trust on the care professionals and wait until they fix the system)

I then told a bit about Open Mind-Support Meetings / the Eindhoven Model (Family Group Conferencing for Supported Decision making), which is about self-empowerment: A person can ask for support for dealing with life’s challenges, which can be a question like: “I don’t want to be institutionalized, but people are calling for that, what can I do?”. Then the person will be helped to invite his network and all together they make a plan on how this wish can be fulfilled. It’s basically a kind of voluntary “treatment plan” for life in the community (not for institutionalization). I showed my poster on the beamer.
(see picture below this text)

Then we had some more discussion on various aspects of all presentations and afterwards Hans Petersen from SPT seemed to have changed his mind, and he was really interested in how article 12 could be effected, and how support could be possible instead of forced interventions. He asked to send info to the SPT on this.
In the lunch time I had some more discussion with Hans Petersen on how to deal with psychiatric emergencies, but we didn’t have enough time to really clarify all dynamics that are relevant (no prevention, negative attitudes, lack of hope and so on), and to define a shared position on suicide-interventions without free and informed consent. Then I suggested to have a day of discussion with SPT to discuss some cases in depth, to come to a shared understanding. Hans thought this was a good idea. We should see if that can be arranged.
I think it’s very positive that Hans from SPT was opening up to learn about a new view. This is a very good result of our session..

I got many compliments after my presentation, participants saying it was fantastic, brilliant, very helpful, very clear and real. I was very proud when Juan Mendez called it “illuminating”. This is of course making me very proud.

And then it was lunch time and I had a chat with Juan Mendez about my personal case. He has sent a letter to the State of the Netherlands, as being the UN Special Rapporteur on Torture, to ask to clarify my experiences. It seems that the state responded (I will get an email soon), and then Mendez will draw a conclusion and sent it to the Dutch authorities, and make it public as well!!!
This is so great! I’m being heard!! I feel so wonderful about this! I felt like singing and dancing and jumping around, but I was still in the meeting, so I didn’t do that.. I’m so grateful to be heard. So many years of struggling.. I’m really looking forward to receiving the info. I can’t believe it’s happening. It looks like I successfully filed an allegation on torture and other cruel, inhuman and degrading treatment against my country.. Will this be the moment I have been waiting for? Is it really happening now? It’s incredible. I hope to get the info soon, so I can get a clearer view on what’s happening. I actually don’t know. But it feels good!!!

The afternoon session was on LGBTIQ treatment in healthcare settings, but I don’t have more time or energy to write on that.

At the end of the day Juan Mendez mentioned that he is willing to state that solitary confinement and restraints as a treatment are a violation of international law - with no exception for psychiatric emergencies!!! This is great! It needs to be said. I feel he is an ally. It was a wonderful day that will go down in history. I’m so grateful to be part of this, and to be heard in my personal case. Everything about this trip is a complete miracle. So amazing !!!!!

But I should go to sleep now. It’s way too late already (2.30). Time to dream :)