Dementia and ethics
I need to explore the ethics and morality of aspects of dementia in order to justify my views on some things.
I have opposed the use of pretend bus stops in hospitals, or shops in care homes, that are installed to improve in some way the living experience of people with dementia.
What are the arguments put forward for these?
First, that they provide distraction for a person at a time when, and in a place where, they may be distressed and confused, thereby reducing distress and confusion.
Second, that they facilitate reminiscence, and thereby induce positive memories and feelings, and opportunities for conversation.
Third, for a hospital patient or person living in a care home they provide somewhere for the person to go to when they walk around (aka ‘wander’) which may become familiar or induce pleasant feelings and memories.
What are the arguments against using artificial environments like bus stops and shops?
One, they may cause more confusion, specifically when a member of staff has to explain that the bus stop or shop is not real, and that the person’s perceptions and interpretation are wrong.
Two, in a public environment, a person sitting in an artificial shop or bus stop will be marked out as someone who does not have the cognitive capacity to realise that it is artificial. They will thereby identify themselves as cognitively impaired and may be treated differently by others, without justification.
Three, it is intrinsically wrong to deceive a person in this way, whatever the reason.
Let’s examine these in more detail.
And let’s ask whether there is evidence to support any of the arguments. Evidence might be subjective, by third party observation or by self-evaluation. Or it might be objective, obtained through using statistically reliable approaches or double blind trials.
Medical professionals and NICE require clinical evidence of effectiveness before adopting or recommending a treatment. This is to avoid wasting money on treatments that do not work for a sufficient proportion of patients, and avoid causing unwanted side effects. We should also choose approaches to dementia which are proven to be effective for the majority of patients, or selected patients, in certain specified circumstances.
One of my concerns about these discussions of what works to improve quality of life, and/or reduce distress, anxiety or confusion, for people living with dementia, is that discussions are not based on objective, measured evidence. It’s not acceptable to rely on anecdotal evidence in order to provide treatments or environments or approaches for patients, as you cannot know whether you will do harm rather than good, or whether the approach is effective at all.
And many approaches are devised, promoted and defended by people who do not have dementia. They may have reasons that are not ethically defensible, or are simply subjective and related directly to their own feelings, imagination and life experience.
Distraction may reduce distress
This is a plausible argument, and any distraction might reduce distress. Drawing someone’s attention away from something they are seeing or hearing or smelling or thinking…can be useful if there are no adverse consequences. And if it works.
But what is causing the person’s distress?
In a hospital it may be:
Not knowing where they are
Not recognising people near them, speaking to them or touching them
Not knowing why they are where they are
Not knowing why they are being moved
Not knowing why a machine is being moved towards them, or equipment used on them
Hearing unfamiliar noises
Being in pain
How do people respond to distress or fear when they have impaired cognition, or dementia?
Cry or shout out
Hit out at someone
Swear and curse and use abusive language
Try to walk or run away
What are the accepted, acceptable and proven approaches to reducing distress in people living with dementia?
Touch gently (hands and arms)
Listen and validate
Distract with personal biographical details or other things like offering food or drinks.
Which of these approaches can make the situation worse?
I would suggest none, other than distraction if done wrongly.
What could make distress worse in a hospital?
Making confusion about location worse
Adding further layers of perception that require processing
Adding noise or aggressive sounds and voices
Restricting a person’s movement
Ongoing or increased pain
Distraction can be achieved by surroundings, or by seeing a person, by hearing sounds, or feeling the touch of a person. And there can be no intrinsic objection to these.
What then does an artificial, pretend bus stop add?
More opportunity for confusion? Of course.
Opportunity for the person with dementia to be identified and mocked for believing the bus stop is real.
A location to walk to which staff try to prevent you reaching because they do not want you to walk unaided.
It may also provide some colour and interesting objects, which those with normal cognition will recognise and chuckle about or talk about. But a person with advanced dementia will be unable to process the fact that it is fake.
An example quoted on twitter recently is where a nurse had to lie to a patient that the last bus had already left and they would come back the next day to catch the bus.
What is the effect of telling a patient that what they believe is real is not? And that there will be no bus today? Or that one will come tomorrow, up the ward? And that they should either sit there or return to their bay.
Further confusion, surely. If smiling and speaking gently to a patient reduces their distress, well do just that. Without the added factor of a bus stop that is not a bus stop.
The issue of distraction becomes morally difficult when distraction is through a lie or deception.
Is it morally acceptable to tell a lie to distract someone from their thoughts?
Does the end justify the means?
Do we have clinical, reliable evidence that demonstrates that a particular distraction works to reduce distress? Or to reduce confusion?
That one patient is observed to respond positively when sitting in a fake bus stop when spoken to in a validating way does not constitute the evidence that we need about bus stops in general for all confused patients.
Evidence to support using an approach would require validity, such as from a double blind trial, or at least a significant number of observations with accompanying relevant information.
What about the causes of distress and confusion?
Should we not eradicate or reduce the causes of distress and confusion?
The Kings Fund Environmental Guidelines for dementia friendly hospitals goes a long way towards achieving this. The changes cannot be all be done over night or even in a single year, but over five years or so a huge amount could be done. Orientation clocks in view, friendly warm colours, appropriate lighting and noise levels, the right signage in the right place.
Pain is a huge cause of behaviour change. Pain identification in patients with dementia requires all nursing and medical staff to be familiar with proven approaches. This requires training and regular updating.
All staff need to be trained and regularly updated in how to approach patients who have dementia. Smile. Get on their level. Look at them, and make sure they look at you when you speak. Take time, give time. Gentle touching or stroking of hands or lower arms. Explain what is about to happen every time before you do it. Wait till they are ready.
Don’t move the beds of patients with dementia around the hospital or ward unless clinically essential. And never move them at night or late in the day.
Provide finger foods and lots of drinks in easy to hold mugs, placed close to the patient’s hands.
All this we know. Yet all this does not happen. Not 10% of it. Not 10% of the time.
In medical care it is ethically or morally wrong not to provide the proven and evaluated approaches that we know work? By not doing these things we are causing harm to patients. Does a pretend bus stop absolve us of these omissions? No.
What if the person’s imagined and remembered children don’t come to the bus stop when expected, say at 4.00? What confusion and anxiety could that cause?
If you set up a false situation in the first place, you are creating opportunities when you have to lie again to get out of them.
Again, distraction without lies is positive and works. We shouldn’t be using lies.
What about the ethics behind lying and deceiving?
In what circumstances might it be right to deceive a person?
In what circumstances might it be right to lie to someone?
Moral absolutism would have it that there is absolute right and wrong, based in our culture on Christian religion. So there are ultimate truths and rights. The ten commandments? At least, do not kill. Do not steal. Do not covet. Do not deceive or lie.
So an absolutist answer would be: never deceive or lie.
A moral relativist would have it that right and wrong is determined by what the majority, or the culture, of people in a group believe is right or wrong, and that these rules of right and wrong change over time. They might therefore justify lying if that is the accepted norm in the group or community. Which it is not.
Moral in-between-ism would say that there are a few absolute rules of right and wrong, and other rules which a group or culture might collectively agree to abide by, and which may change over time and between cultural groups.
Where on this continuum do deception and lies sit?
Pose some real questions…
Person A has terminal cancer. Should a doctor tell him or keep it secret?
Person B’s wife is known by his friend to be having an affair, unknown to B. Should the friend tell him?
Person C is bankrupt but asks your friend for a loan of £1000, without telling him. Should you tell your friend?
Person D is blind, and in a meeting people are making rude faces at him. Should you tell him?
Person E has advanced dementia. Hearing a bell ring she believes it is Sunday and time to get dressed for Church. She is agitated and afraid she will be late. Should you tell her it is Friday and there’s no church?
What are the circumstances when it is deemed acceptable, or right, to do wrong to an individual?
19th century philosophers, utilitarians, believed in the greatest good for the greatest number. JS Mill, Jeremy Bentham and others, based their philosophy, their social and economic models, on this theory. They believed that a few getting undesirable treatment could be justified by the majority getting a better outcome. Thus, perhaps, lock away trouble makers and lunatics and lepers so the rest of us can get on with our cosy, happier lives and prosper.
These days many people believe that the end may justify the means, and that doing what might be deemed wrong can sometimes be justified by the desired outcome in others.
Was this not the justification for the Iraq invasion? Or the holocaust? Or electroshock treatment and the pharmacological cosh for schizophrenia?
War is always wrong, except to right a bigger wrong?
Deception is always wrong, except to address a bigger wrong?
When my mother in law died a few months before her husband, who had advanced dementia and a ten second short term memory, what were we to say when he asked where she was?
She died Chris…and every time he wept and mourned for a few minutes. Then forgot.
Day after day, hour after hour, till we realised that it was better to say she was in the garden, or at her knitting group. ‘Let’s have a cup of tea and wait for her.’
So we lied and deceived because he could not remember an upsetting fact, and it was kinder to help him not think about it.
So where does that bring us?
What are the rights and wrongs of creating fake places? Or deceiving people living with dementia who cannot process facts and surroundings?
It is morally wrong to lie. It is also therefore morally wrong to deceive.
It is morally right to reduce suffering if it is possible.
It may be morally justifiable to do wrong in order to reduce another wrong.
Is suffering wrong?
Is suffering only wrong when it is caused by an act that is deliberate and optional?
Is suffering still wrong when it is unavoidable, or simply the result of being alive and a sentient being?
Ethics, I read, does not generally try to provide a solution or an answer. It clarifies questions and it may provide a framework that enables a person to work out their own decision.
Medical ethics insist that doctors must do no harm. Better not to act than to act and risk doing harm. Hence the necessity of clinical, proven evidence for treatments.
I believe we need to look at the cause of the suffering if we are to decide whether an act that seeks to reduce the suffering, but may be morally wrong, is justified. If you can alter, reduce or eliminate the cause of suffering then that is the right thing to do, rather than allow the cause to continue and act to reduce the effects of the cause.
In our case, fake bus stops, shops, railway carriages, etc, what are they designed or intended to achieve?
In a care home – remember, a person’s actual home – a fake railway carriage seems to be intended to be an amusing, enjoyable place to relax, to sit and chat, and to reminisce. To stimulate pleasant memories and feelings.
A fake shop may be just the same. An artifice intended to stimulate conversations about the past.
Do the people ‘using’ these fake places know they are fake? Or are they at a stage where they cannot differentiate, and where any slight inkling of memory is what is wanted? Any contact with their past which lights a bulb inside?
If people know they are in a fake place, like a cafe designed and decorated as a railway carriage, what is there to be concerned about? It is their cafe. And if it has other benefits like reminiscence that is good.
If they are being lied to and deceived, as in a bus stop with timetables and a sign in a hospital corridor, when they are in a state of confusion and anxiety, surely suffering, this I believe is wrong.
The causes of their suffering are likely to be:
illness and pain,
finding themselves in unfamiliar surroundings without any of their ‘grounding’ or orientating landmarks,
being done to by strangers who cause them pain and appear to threaten them with procedures.
What we should do is eliminate or modify the causes of suffering where we can, not attempt to alleviate the suffering by doing further wrong through deception.
Fake bus stops seem to be an attempt to distract people who are unable to interpret their surroundings or situations so that they no longer think about them negatively or with fear.
They may be colourful. They may be fun…for those who know they are fun!
But they do not address the cause of the suffering.
And they are morally wrong because they deceive when there is no greater good to be achieved through deception which cannot be achieved by other, morally right means.
What should be done to reduce confusion, distress and anxiety – suffering – in people with advanced dementia in hospitals? And in care homes?
Train all staff so they know how to – and do – use positive approaches to behaviours of people who are distressed.
Train all staff so they understand dementia and its effects upon people, and how to approach patients, explain what they are about to do, and provide comfort.
Train all medical, AHP and nursing staff to recognise pain.
Don’t move the beds of patients with dementia except if clinically essential, and then only between 10 and 4.
Change the physical environment so that it is colourful, warm, orientating, comfortable.
Reduce noise. Increase lighting during the day; reduce it at night.
Provide places for patients who are mobile to relax, meet, chat, have drinks and eat.
This is all doable. And will reduce disorientation, confusion and anxiety, ie suffering.
I know a few people are taking issue with me over this bus stop issue. I hope this piece has explained my reasoning.
Ask people living with dementia while they are in early to middle stages how to resolve these issues. Ask what they want. Ask what matters to them. Co-produce solutions.
These artificial constructs which aim to distract through deception are the constructs of people without dementia, people who have for years, decades, decided they know what’s good for us, and who believe they have the moral high ground because they are professionals.
Well professionals should rely on reliable, clinical evidence.
And those who are not professionals should probably not be telling us what’s good for us.
Read “to kill a mockingbird”. Walk in a person’s shoes if you want to know them. Better still, just talk to them, ask them…ask us.
But I also come back to my fundamental point: don’t treat us like infants. We are adults, whether or not our brains are functioning as they should. It is demeaning and insulting to be treated like a child who is given a pretend hospital to play in.
Just because we might smile in that tent does not mean we are infants.
It just means you have used our inability to comprehend to distract us from our reality…confusion, anxiety and suffering.
If you want to do something worthwhile and that will give us enjoyment, make it real! Create a drop in cafe area. An open lounge or space where we and others can relax. Listen to music. Walk to and from. Sit. Recover.
Address the causes. They may cost time and money, but it’s the right thing to do, ethically and medically.
For those interested, and by way of acknowledgement, I read, and have referred above, to the BBC online guide: “Ethics: an introduction”.