Declaration
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.
annie says
I’ve often thought about how to retaliate with all the bullet points you mention.
But, I always anticipate what would be said in reply.
I can imagine some bureaucrat for example, at the GMC, responding, that it is not usual for patients to have sight of reports which were written about them no matter who it is written by.
This is the beginning of how it all gets one sided.
The patient did not write a report, it was always someone else writing something, nestling amongst all the other reports in the medical records.
This is very, very dangerous.
It is particularly dangerous if each report writer does not confer with other report writers.
It can be seen as a campaign of damage and patient, where is the patient?
Surely, it should be said that everything that transpires between patient and professional is recorded and discussed.
Leaving out the most important parts of dialogue is not helpful to the patient.
One of the reports which did not touch the medical notes was the medical practice receptionist who said “it must be awful for your mother watching you fall apart” as I was nuisance factor in the surgery or calling from home for help and despite wanting to batter her door down, I didn’t, I sat like the Good Patient and even the receptionist (familiar friendly person in our small village) was overwhelmed at the nature of the beast..
The response could also be “what a nice doctor, inviting you into her home for a week after the Seroxat Suicide. That was really beyond the call of duty and we applaud her compassion.”
Her watching me sipping my Paroxetine liquid and still sending off nasty referrals, no, that doesn’t seem quite right.
There can be dynamite in your medical records and it is vital you get access to them just to see what they said about you.
Whatever, they said about you is set in stone and if you cry wolf, the wolf will come at you, dig in its fangs, draw blood and move on to the next patient.
It is a screwed up system, this non system and this is before we even talk about cc….clinical trials..and not sure which latrine that was dropped into..
It certainly would not be of interest to cc….corrupt clinicians….in darkest, deepest Peru…where I live with Paddington Bear..
Long Walk to Freedom is one of the most profound books you will ever read in your life and I assume most enlightened persons have read it.
Most of my super learning does not come from medical books, it comes from books like this and extra ordinary people like Nelson Mandela who despite all the tricks of his mind, kept his mind and then some…
The people I empathise with most are those who never got the chance to take the Long Walk to Freedom…and that takes us right back to ‘clinical’ trials and everything that can be said about that on Study/Mandela/329
http://www.theguardian.com/society/2010/may/24/andrew-wakefield-struck-off-gmc
Another man who hasn’t rest on his laurels with his film, Vaxxed and who also never gave up…
This is what Natural News is saying:
http://www.naturalnews.com/053719_David_Gorski_Wikipedia_VAXXED_documentary.html
mary says
It has been encouraging to see so much attention given to Southern Health and its problems on the news today, very much due to the campaign led by Connor’s family following his untimely death. Let’s hope that things will improve in that region as a result of this.
It was fantastic news about the Hillsborough decision – that the truth is finally out after all these years. Now, they say, they will fight for justice.
Shouldn’t we take heart from these news snippets and begin to feel that, as long as we persevere with ‘truths’ as we see them, it is possible to bring about changes….even if it takes years for any change to become apparent?
Johanna says
I met a man recently who had (just barely) rescued his dad from a kidnapping of this sort. His dad listed him as his next of kin and had given him power of attorney to deal with his finances — dad had been intermittently mentally ill and on disability for years. However, he was on the West Coast and his dad was in New England. He got an SOS call from Dad, who had been hospitalized again. The hospital was having him declared incompetent so they could give him ECT against his will!
My friend called the hospital, who knew full well Dad had a closely involved, caring adult son. They ignored him totally, and filed court papers to appoint themselves his dad’s guardians, so they could treat him involuntarily! My friend had to fly across the country, get a lawyer and threaten a full-on court battle over custody of his dad. He’s a very savvy guy who works in healthcare admin himself; I doubt most relatives could have succeeded.
Here’s how my friend explained why he fought so hard: He doubted ECT would do his dad any good — the behavior that got him hospitalized was more “manic” or “paranoid” than severely depressed — but conceded he wasn’t an expert. However, his dad had endured too much trauma and coercion already. He was a Vietnam combat vet, who after the war had repeatedly been forcibly injected with anti-psychotic drugs in VA hospitals. He’d also been in prison briefly.
Being forcibly put under for ECT, perhaps a dozen times, would traumatize this man all over again. It also threatened to wipe out any chance of Dad learning to trust and work with mental-health professionals again — which was absolutely vital for a man in his shoes. And my friend knew there were other ways to get Dad back on a relatively even keel.
Nelson Mandela (a man most would consider not just sane but heroically sane) makes the same point above: coercion and confinement have costs all their own. Especially in “behavioral health.” Doctors should use them with at least as much caution as chemotherapy, open-heart surgery or other hazardous measures. Only in the most extreme circumstances should anyone lose the right to say no — and we should always have the power to name the person we want to make decisions, if we can’t.
annie says
“We thought about giving your mother, 95, antidepressants or a benzo driver, but, we thought if we did that we would not then know what was wrong with her”
Visiting GP statement to me who had Power of Attorney and who spent six months every day at the Nursing home.
I said explicitly to all concerned I did not want my mother on psychotropic drugs of any sort. She was obviously too old and, I knew instinctively that these drugs would certainly not be helpful
Having decided not to give her psychotropic drugs, they then thought they would give her other drugs.
A lot of other drugs.
When I arrived in the Nursing Home I was shocked.
Who was this little shrivelled body, a ghost of herself, lying dormant, unable to even raise her arm, feed herself or do anything at all apart from lie there, her eyes shut and her mouth wide open.
“She is an old lady and we expect that she will die”
Visiting weekly GP who decided in his wisdom that my beautiful, very alert, very smart mother was deemed “end of life”.
End of life is final.
I suppose I became really annoyed and told the man gp “not to give my mother her last rites” because of age.
There was nothing wrong with her.
She did not have dementia, parkinsons, heart problems, liver problems, cancer problems…she had nothing wrong with her.
I was shocked at the amount of drugging she was administered and it was all very disturbing for her. Am I dying she would croak, why can’t I get up, what are they doing to me…
It was truly awful…….
With my background and experience would you not have expected that I should have done more to save her. She exchanged one sentence with me daily. I am so glad you are here, dear. How are you?
Selfless to the end.
If the post mortem turns up over enthusiastic use of drugs, then, there will be an Inquest.
The decision rests with the Chief Coroner in Kent who will base her decision on what results came out from the incredibly difficult decision to go for Post Mortem.
There are some things you just have to pursue. and this is by no means a unique situation but I am fully equipped to take it further as you have to do when you know they got it all wrong….déjà vu..
I can add to Mandela, Scott of the Antarctic, Endurance, and The Worst Journey in the World and the whole gamut of books on the physical and mental strength of Pioneers.
Please read it.
http://www.goodreads.com/book/show/48503.The_Worst_Journey_in_the_World
“Never again. Never again will I complain. About anything. The sufferings heaped on the members of Scott’s second polar expedition make the ordinary misfortunes of modern life –- the fender-benders, hangovers and breakups –- seem like pleasant diversions. There are passages in this amazing memoir where the reader, appalled, begins to suspect that these men were collaborating on a metaphysically refined form of self-destruction.
Apsley Cherry-Gerrard –- and let me say now what a wonderfully plummy name that is, worthy of some mad squire in a Waugh novel -– was, at twenty-four, the baby of the expedition. Passed over for the doomed ‘Southern Journey’ to the pole, he survived and made it back to England. Years later, at the suggestion of his neighbour, George Bernard Shaw, he put together an account of his experiences, calling it, with good reason, The Worst Journey in the World.
Actually, the titular journey is not the famous ‘dash’ to the pole, but rather an earlier sub-expedition Cherry took part in: a hellish five-week slog through the permanent darkness of an Antarctic winter. This has got to be, without question, one of the most whacked, ape-shit schemes in the history of exploration. A few random details: temperatures so low that sweat would freeze the instant it emerged from the pores; frostbitten flesh that would break out in horrid, suppurating blisters, the very pus of which would itself freeze in turn; agonizing eight hour marches that would cover barely a mile, at the end of which Cherry and his two companions would spend an hour thawing out their sleeping bags so they could burrow into them, only to shake and thrash uncontrollably for the rest of the night. Oh, and here’s a nice touch: Cherry’s teeth spontaneously shattered in the -75 degree air. After a few days of this, it occurred to them that they were all going to die in that howling void. Cherry, at least, welcomed the idea:
I for one had come to that point of suffering at which I did not really care if only I could die without much pain. They talk of the heroism of the dying – they little know – it would be so easy to die, a dose of morphia, a friendly crevasse, and blissful sleep. The trouble is to go on…