Imagine if four times a day people took you by the arm and led you to the bathroom, before pulling down your trousers and sitting you on the toilet, whereupon they would stand over you, imploring you to defecate.
If you were physically large or had previously lashed out, infuriated as you were by this inexplicable treatment, you might have three of these people standing watching you, offering you encouragement such as, “Come on! Squeeze it out!”, in much the same tone of voice as somebody might encourage a budgie to ring its little bell. If you refused to go to the toilet, you would be gripped by the arm that little bit tighter and walked there.
At some point later in the day, you would be walked to a table to eat, then later still, walked to your room and undressed and put into bed, little choice offered in the matter. And if you were to get up during the night, you would be asked (then told) to go back to bed, eventually ‘assisted’ there physically if assertiveness should prove ineffectual. For you are an informal [non-detained] dementia patient on a psychiatric ward.
The above acts are not carried out with malice, for the reality is that if you were not taken to the toilet you would soil yourself, and if you were not taken to dinner, you would go hungry. And yet they fall foul of both the law and of the ethics of mental health care.
Legally, as an informal patient, staff do not have the right to lay hands upon you against your will. Such behaviour can fly close to what constitutes assault, which here in Scotland has in the past been prosecuted for physical contact that “causes … immediate fear and alarm for [one’s] personal safety”. And, from an ethical point of view, as spelt out in the Millan Principles which underpin Scottish mental health legislation, the “least restrictive practice” must always be employed, and care should be informal whenever possible.
It is for this reason that consultants do not simply use mental health legislation to detain all of this patient type so as to provide legal cover for unwanted touching; it would not be appropriate to detain somebody because they might fall over or because they require physical guidance.
The alternative to this ‘firm’ nursing practice was utilised on my ward a few months ago by a charge-nurse, then unknown to the regular ward staff, who turned up one night to do a one-off overtime shift. She sternly informed the staff there, who were at that moment leading patients to their beds, that they could not “force” those patients to do anything they didn’t want to do, including going to bed. As a result, several patients spent the night wandering, entering other patients’ bedrooms, causing the latter to become agitated and angry. Few patients slept. The place was in discord. Other patients were not toileted (because they didn’t want to be toileted). What could have been a quiet night became a howling, smelly chaos.
So we have borderline illegality versus chaos, where to lay hands upon a patient is legally dubious, but to not do so is a dereliction of the duty of care. For make no mistake, if the family of a patient who has been given the freedom to not be washed turn up to find their relative stinking and dishevelled, they will be putting in a complaint. And so an ever growing part of our population find themselves living in this legal hinterland (a projected 2 million in the UK will have dementia by 2050). Their care falls between two stools, where practical reality is always pulling against an ideal of care that has been imposed from above (that is not to dismiss the ideal – it has been devised to counter the dismal and dehumanising nursing practices of the past).
In practice, this clash often centres on issues of restraint or constraint. Padded-cells are now regarded with abhorrence despite the fact that for a small number of patients – those who hurl themselves about recklessly and are forever covered in ghastly bruising – they would be both useful (if used as intended, for short periods) and cost-effective (in that a member of staff would not constantly have to be with the patient).
Consider another patient type: the little old lady who never stops attempting to walk about, but who is blind and unsteady on her feet, and will fall if left unattended.
As recently as six years ago, when I began working with dementia patients, it was common to see such patients strapped into specially designed chairs so as to prevent them from wandering. It then became necessary for doctors, in consultation with family members, to prescribe such mechanical restraint, and that such usage be limited to one hour a day, and that it be documented. The practice, on my ward, has now fallen completely out of use. As such, the inhumanity of binding people to chairs has been dispensed with. However, an enormous amount of man-hours are devoted to a small kernel of patients, whilst the majority, less immediately at risk, often experience minimal therapeutic interaction with staff.
The imperative for an ideal form of care also precludes the use of any temporary ‘improvised’ forms of restraint, such as tucking a patient in behind a table with their back to the wall at mealtime, so as to try and get the patient to sit long enough that they might eat some food. Using foot-stools to raise the patient’s feet whilst they sit, if it is intended to curtail movement, is also verboten.
And so, in our little old blind lady, we have a patient who must roam but cannot roam. And so she shuffles about her legal hinterland, never being restrained in any way, but ‘directed’ and ‘distracted’ and ‘reassured’, and whatever other euphemism can be employed to describe the act of attempting to corral somebody who has absolute freedom. As our dementia population increases, so will this list of euphemisms.
If the NHS is to push care towards the ideal and away from that which is merely practical, the cost will be vast. For at the moment a dance is performed, designed to charm and create the illusion of ideal care. It is not the fault of staff or management or even government. It is the fact that we have an incurable illness which does not always lend itself to ideal forms of care. And a society where old people no longer reside at the heart of families, living separately from children and grandchildren (though the presentation of many dementia patients makes living at home, even with relatives, difficult). Neither do we have insurance policies or pension plans that deal with the possibility of the onset of dementia.
Instead we, as a society, tend to shove it all onto social work and the NHS, with its uneasy trade-offs between the ideal and the practical. I pray that neither I nor anybody I love gets dementia.