The Mental Capacity Act 2005 (England and Wales) is a framework to empower and protect people who through established lack of mental capacity are unable at times, to make some decisions about themselves.
In this post I will consider major decisions relating to health care treatment.
I would recommend you visit http://www.publicguardian.gov.uk/mca/mca.htm which provides a comprehensive, easily read and understood view of the act.
All the residents in my workplace have care plans covering The Mental Capacity Act and where needed, care plans covering Best Interests. These are evaluated monthly and reviewed half yearly,
However, we have been requested by our local PCT to assess the residents again, its purpose purely that of Anticipatory Care Planning and - as it appears to us - its desired goal that every resident will have an Advance Decision to Refuse Treatment in place.
The following principles are covered in The Mental Capacity Act 2005:
- A person must be assumed to have capacity unless it is established that they lack capacity.
- A person is not to be treated as unable to make a decision unless all practicable steps to help him do so have been taken without success.
- A person is not to be treated as unable to make a decision merely because he makes an unwise decision.
- An act done, or the decision is made, under the Act on or behalf of a person who lacks capacity must be done, or made, in his best interests.
- Before the act is done, or the decision is made, regard must be had as to whether the purpose for which it is needed can be as effectively achieved in a way that is less restrictive of the person's rights and freedom of action.
The test of capacity looks at whether the person has an impairment of the mind or brain, or if there is some sort of disturbance affecting the way their mind or brain works. Whether this impairment of disturbance is temporary or permanent does not matter. It is whether the impairment of mind or brain means that the person is unable to make the decision in question at the time it needs to be made.
The functional test looks at whether the resident can:
- Understand information about the decision to be made.
- Retain the information in their mind,
- Use or weigh that information as part of their decision-making process.
- Communicate their decision (by talking, using sign language or any other means.
I work in a mental health environment, so do not pretend to understand how Anticipatory Care Planning is viewed in a general nursing setting. I can only express views on what I know.
Our residents are a mix of age related dementia's, alcohol related dementia's, acquired brain injuries, organic brain syndromes and enduring mental health problems. The ages of some of our residents would frighten you! You do not have to be old to live in nursing/residential care!
I worry that these vulnerable folk are being gently pushed into making a decision that may result in an untimely death and that it is purely a cost saving/hospital bed freeing exercise.
Consider (3) of the principles of the MCA - a person is not to be treated as unable to make a decision merely because he makes an unwise decision. If a decision can only be one of "Yes, I will sign up to a ADRT" or "No! I won't!" - which is the unwise decision?
Consider sweet little Ethel who happily signs her own death warrant - just to please! She has not considered death, but has succumbed to suggestions that she does not want to die in pain or become a burden on her family; but she really doesn't want to die and has no idea of the ramifications of the document she has just signed.
Consider Fred who has an acquired brain injury with resulting dysthymia. Fred often states that he wishes he was dead - but there is no suicidal ideation. On the day he signs up to an ADRT he certainly does have mental capacity - but he is depressed; due to his depression we come back to principle (3) - is it a wise or unwise decision. Would he make the same decision tomorrow if he is not depressed?
The permutations of why decision making is wrong - if making a decision in a vacuum - are endless!
The Mental Capacity Act came into force to protect the vulnerable - not to be used as a tool to engage the vulnerable into signing their own death warrants!
The next post will look at the Liverpool Care Pathway.
Anna G.
10 comments:
An important post that highlights the dangers of what I have called Abstract Care Planning ADRTs, or Schrödinger Decisions.
I have the same concern about abstract/routine assessment of mental capacity. The Act and related guidance make it very clear that any assessment is both situation and time specific, which begs the question: does a routine assessment have any meaning? Might it even be legal nonsense?
Thank you for your comment Dr. No.
I am concerned regarding the reasoning for this sudden desire for all care home residents to have Anticipatory Care Plans.
I can understand the logic of it, but... outside of end stage conditions - worry that some acute conditions may be left untreated, purely because the person is elderly and an ADRT is in place.
It all makes me feel quite uneasy.
A witch's view is very simple.
No matter how "nicely" done, if a doctor / nurse or other health care worker brings up with a patient the "circumstances" or "arrangements" surrounding the death of that patient, they are going way beyond their professional remit. This would include waving an ADRT in front of them.
If the patient however, raises the issue without any prodding, then that is quite another matter.
Patients have a right to think about the circumstances surrounding their death. They also have a right to obliterate such thoughts from their mind.
It is important to find out the origin of this and find out why you are being asked to do it and to challenge it.
Thank you for your comment Witch Doctor.
Anticpatory Care Planning is the brainchild of The Department of Health. Details can be found at http://www.dh.gov.uk/ - you will need to download PDF,781K, its title being 'End of Life Care Strategy.'
Its main aim would appear to be too reduce what are regarded as unnecessary hospital admissions - that is end of life care.
Our fear is that with ADRT documentation in place, what is deemed end of life will become blurred - and that little granny who has a RTI will not be treated and thus recovery is not an option or a possibility; merely because she happily signed up to an ADRT when impending death was not a reality.
I do not believe our fears are unfounded.
I've had a look at the "End of Life Care Strategy" document and did a search for "Advance Decisions to Refuse Treatment" It only comes up twice.
"In some cases people may want to make an advance decision to refuse treatment, should they lack capacity to make such a decision in the future."
In this context it is important that staff are aware of the person’s preferences and whether any advance decision to refuse treatment has been made, or if the person has appointed an attorney.
Nothing too contentious there....
The website below is more specific. It seems to indicate that the onus to open such a conversation should be with the patient rather than a member of staff. It also states that:
"Not everyone will want to engage in such a conversation and that is fine."
http://www.adrtnhs.co.uk/pages/patients/patient3.htm
Perhaps if staff are now being asked to initiate the conversation regarding ADRTs then there is some "creep" going on and this should be challenged.
Thanks Witch Doctor.
I do believe the "End of Life Care Strategy" is, in essence, fine and admirable; paving a smooth pathway to a comfortable death. I have no problem with it.
I do wonder however, if it has become a 'read between the lines' document in the way it has been linked to ACP; for if not, it would appear that an entire PCT and all participating GPs have misconscrued its aims/purpose. The link has definitely been made.
I would be intereste to discover how ACP has been interpreted by other PCTs in its relation to care homes; yet, despite much research - I have been unable to find what I am looking for. I shall plod on regardless!
"I worry that these vulnerable folk are being gently pushed into making a decision that may result in an untimely death and that it is purely a cost saving/hospital bed freeing exercise."
I have been thinking about since you posted this topic and wanted to see how docs will respond before putting my opinion forward. It may be a naive view, but stopping treatment IMO does not mean untimely death because people will die when they are supposed to die and not because treatment was continued or stopped, unless drugs are used to speed up their dying. If that, then this is an unethical practice; to get ptients to sign a piece of paper then use that to drug them to a speeded up death. But, if by signing that paper, all that is going to happen is that further treatment will be witheld, then, in most cases, it may be for the best not to continue with medication that will only prolong a not very nice life for those patients. I wouldn't want my life to be prolonged if I was demented, depressed and dependant on others, would you?
Hi Sam.
Many people no longer die when they are 'supposed' to die. With advances in medicine - we are now living longer. Prem babies, RTA victims, people who have diseases/conditions that once carried a death sentence, etc, all now carry the potential of successful treatment. Would you deny any of these people treatment because medicine has interfered with the process of death?
Who has the right to choose a group of people the denial of life sustaining treatment? The elderly, the depressed and the dependant have rights too. If we do not protect the vulnerable, we have to consider - who will be next? Who will be perceived has having no value?
Personal experience makes the horror of all this very real to me Sam. All life is worth preserving if a certain quality exists.
End stage illness is a different matter and yes, I would want a loved one to have a peaceful, pain-free exit - but only then!
Anna.
"Who has the right to choose a group of people the denial of life sustaining treatment?"
No one! Not even the affected patients too IMO - and you are right that we should protect the vylnerable ... if only because of that word 'value' because, I shudder to think that this is how we maybe are evaluating 'life' these days!Hence, I must say I totally agree with you that "All life is worth preserving if a certain 'quality' exists." Although we didn't really differ in opinion because I meant to say what you said, only you put it better ... see, if it were me, I wouldn't choose quantity over quality, but would want to allow nature to take it's course if life became a burdon - but without signing death notes. I think they are disgusting!
You see, all this talk about 'end of life' is a bit confusing for so many people, health professionals included - it's not 'end of life', it's 'death' ... and that is, unlike how most people percieve it, if a gift 'when the time is right' as you say - and it's not up to anybody to think they know when is that going to happen, not the docs, the nurses, the families or the patients ... this I classify as 'playing god' and that is never a good thing.
:-)
Thanks Sam,
I have realised that my last paragraph doesn't 'read right.' Any person where death is imminent deserves a comfortable death and I also realise that docs also know wnen treatment is futile in a given case.
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