There's a presumption that patients have a right to treatment.
There's a duty of care that mental health folk have to patients.
There're laws passed (statutory instruments) that give us the tools to undertake this care.
All well and good, most of the time. But what if it's taken to extremes? Who should be treated, and how much, for how long? At best it's quirky and autocratic care, at it's worst it's paternalistic and tyrannical health care. Gets you thinking, this does, when patients crop up with unmet clinical needs that could be treated.
Let's take a lady and call her Alice. Alice is elderly and depressed. She's often had bouts of depression in the past so has a diagnosis of F33.2 Recurrent depressive disorder, current episode severe, without psychotic symptoms. She was unable to look after herself well, feeling weary and disinterested in "stuff to deal with" to get through a day, wasn't eating anything but gingernut biscuits and wasn't drinking much fluid at all. She smoked over 100 cigarettes in a day (usually it's less than 20) and was too demotivated to go and get more so was withdrawing from nicotine abruptly, too. Life's bleak, she'd rather go to sleep and not wake up. She's no energy, no hope, no joy, no quality sleep, no feeling refreshed, no motivation. She feels utterly worthless and a nuisance to everyone.
2 months ago she was right as rain.
In the past when this has happened she's had ECT, been cured, gone home and stayed well for between 10 to 22 months before another depressive episode occurs.
She refuses people coming in to her home to help. It's started anyway, but she doesn't let them in. She refuses hospital admission and is fading away fast. She's admitted under section 3 of the Mental Health Act 1983 for treatment of her underlying mental disorder, depression.
She refuses medication and historically has poor concordance with prescribed medication on discharge, with the only antidepressants in her flat on this occasion being 4 months out of date and untouched.
She's said in the past that she doesn't want ECT again.
Through her depression she's got marked bradyphrenia, depressive cognitions, cognitive distortions and abberant ideation. She's not frankly psychotic, but her thought process are disturbed through her depression so, within the meaning of the Mental Capacity Act 2005, she has imparied function of her mind and is an incapacitated adult (with respect to the decision to determine current treatment such as ECT).
This time, what should happen?
It's not even up for discussion as the law stands; she should have ECT :
- she has a mental disorder
- we have a duty of care
- she has been detained under the Mental Health Act 1983 for the treatment of this mental disorder
- statistically we know ECT is the treatment of choice (better outcomes than tablets, swifter resolution of symptoms, safer with half the mortality of antidepressants) and specifically we know it works very well for her, very quickly, such that's she's well and functioning independently for a year or two even off all medication. So the clinical intervention of choice, for her, at this stage, is ECT
- she refuses ECT and has, in writing, an Advance Decision refusing ECT treatment. But ECT can be given under Part IV of the Mental Health Act 1983 under section 62 then with a Second Opinion doctor agreeing under section 58, so we've a statutory instrument allowing us to deliver the care she needs.
- ECT is given, she gets better after 4 sessions (two weeks) but has 2 more sessions to consolidate the treatment course, she's regraded and discharged and is well
Outcome : a lady got the care she needed when she was unwell and vulnerable and was cured, for a while at least.
As an aside, having taken advice on this, if her Consultant Psychiatrist didn't give her ECT he'd be open to claims of medical negligence (having a duty of care, admitting her for treatment, having a statutory instrument to use to deliver the treatment but then electing not to do this and thus not providing her with the care she needs and deserves). Like it or not, that's the law as it stands today in England.
I'm totally for people with insight making rational decisions about their current and future care. Some people can very sensibly and very thoughtfully describe why they will or won't buy in to treatments offered to them and make a choice on this. Whether I agree or disagree with that choice then, generally, is irrelevant . . . I'm bound to accept their wishes.
The revisions to the Mental Health Act 1983 are making things slightly different. In the future, if you've an Advance Decision to refuse treatment (including ECT treatment) andf that Advance Decision is undertaken in accordance with the Mental Capacity Act 2005, it'll be legally binding. The Mental Health Act 1983 can't then be used to deliver ECT even if the person's incapacitated with regards to this decision.
I wonder what this will mean for Alice.
It seems that even though the debilitating episodes seem to resolve with ECT, Alice, never the less, finds reason to dislike it so much that she has gone to the trouble of attempting to prevent its use in the future.
What this should mean for Alice is that you will have to acknowledge her concerns about ECT when she is well. If her wish not to have it persists, you will have to look for something else together.
I really don't know.
I know I am totally opposed to ECT for myself. That is recorded in my advance directive. I wrote this acvance directive at a time of stability (being of sound mind, etc). I'd hate to think of it being overridden.
I'd want to explore every possible avenue with Alice (and her carers, if they exist) before embarking on such a step. Perhaps Alice needs a different level of care when she is "well" to ensure she can remain well. ECT seems to be a "quick fix", and I don't doubt that in some cases it is very effective. But maybe a more expensive treatment (home support? talking therapies?) would provide a more lasting result for Alice?
Fortunately for Alice, it means where "she refuses ECT and has, in writing, an Advance Decision refusing ECT treatment" this will actually stand to mean something.
I empathise completely with the service issues of knowing what works well for someone, but when they prefer not to have that treatment - we must find alternatives.
It would also be interesting to know, in times of advance directives, what deliberations the individual has made to determine their decision. Not that this alone should countermand someone's personal wishes, but that it would also help others to realise by what processes someone decides for themselves the right to be 'unwell'.
The existence of an advanced directive are, by definition, the rational and privelidged decisions of the individual for times when they may lose that ability. To not interven may be considered negligent, but to over ride someones AD might also be considered assault.
We seemed to cope 'ok' with the ethical dilemma of non-blood transfusions for Jehovah's witnesses and have High Court examples that have upheld these cultural and religious wishes.
I'm not saying that it's medically ethical to 'allow' someone to become worse or remain unwell - but neither do I feel our self-assumed role of parens patriae gives us the authority to intervene in anyone's life when such opinions are biased by the professional and moral beliefs of providing beneficence.
As health professionals I am happy to stick to being beneficent and would much prefer some other authority to provide the counter argument of self-determination.
I foresee such cases reaching High Court in order to over rule an advanced directive - I also see a lot of assault charges and iatrogenic suits for those who choose to ignore ADs.
We must learn to accept self-determination as a valid and basic principle in life; as a person before the law and as an individual human being.
I'm likely to blog on mentalnurse about this very issue (capacity & self determination) as it presented to me in a similar scenario at work in relation to smoking.
I think that for alice it means that she will be kept in a ward with other "alices"..and we'll be back to where we were ages ago.
(this said by someone for whom ECT being available meant she had a father when she was growing up)
This is poignant.
Not sure if it has answered any questions I have about ECT but because a family member's psychiatrist is saying that ECT looks like the only option for them.
This family member is an OAP. They had ECT 2 sessions (or shots or whatever they are called) and then decided they didn't want any more.
Before they had the treatment I raised concerns about it. The family member was in a state where they would try anything. I sort of undertstand that.
This time round, I still have concerns but acknowledge that family member is very ill and if ECT will make them better, then I accept that (not just because I have to).
I would say I think I am totally opposed to it but am heading in to the haven't got a clue camp.
Would like to ask where the evidence base for ECT as an effective treatment to depression and psychosis is/are. Particulary, in regards to the elderly and what the chances of serious physical side effects/damage or death are. I guess I should ask what the mental side effects are too.
It was refreshing for me to visit your site. If the truth be told, Lake Cocytus is a sort of childhood haunt of mine. I have a cousin quite a few years older and she was reading a Chinese Translation at the time. The same drawing was on the cover (Gustave Doré 1832-1883) and it fascinated me. I read it and was thankful that I did not become crazy. The few that knew me well might disagree! I am a retired Consultant Child Psychiatrist. Please come and visit The Cockroach Catcher Blog and leave your comments.
The Cockroach Catcher
We've tried, over the years, so so many different approaches. Most of the time you're right, you can find some way, another way, a choice which may not be as perfect but is still good enough.
For Alice that's not the case.
Only ECT has been helpful.
She's tried a lot of talking therapies over the years : CBT, psychodynamic psychotherapy, nondirective counselling, DBT, CAT.
She's tried oodles of drugs.
She's tried being on her own, having space. She's tried having friends and being sociable. She's tried being with folk who don't know her. She's tried interests to engross and distract herself.
She's tried change of environment,living in her own home, trying a warden controlled flat and living for a while in a care home. She's tried hospital in-patient care.
For her, shen she's really really ill, ECT works. Nothing else does.
You're right, she's making a rational choice (when well) that will kill her. It's my problem, with the new legislation, of having to accept that.
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