How widespread is the use of deception with people suffering with Alzheimer's? A recent survey targeted at 650 nurses and 450 nurse managers by the Alzheimer's Society found nearly a fifth stated antipsychotic medication was being used inappropriately. It highlights what is likely to be a common dilemma, namely, whether we always think through the implications of deceptions and actions that avoid conflict or difficulties?
One of the ethical problems a caregiver, health or social care professional has is whether it is ever right to deceive someone with a dementia such as Alzheimer's disease. Deceptions can start in the smallest ways for the best of motives. In homes and care facilities deception is used frequently. For example, telling a patient you will contact their relative, in the knowledge they died years ago. These ‘lies' are nearly always used to reduce anxiety but they can be used just as easily to elicit cooperation, or to avoid confrontation.
There is a power relationship in caregiving that nearly always favors the person providing care. In some senses this is inevitable as the person who is sick and vulnerable needs someone to make decisions and take action on their behalf. There remains an assumption that the person who provides care is doing everything they can to alleviate pain and suffering whilst attending to the needs and dignity of the person they take responsibility for. Are we naïve in these assumptions?
Many care facilities for the elderly are far from ideal. Staff work long hours and have huge demands placed upon them. The temptation, indeed the need to find enough hours in the day to meet these demands, is all that may be required to find those little short-cuts. Why spend 20 minutes discussing medication with someone with advancing Alzheimer's when you tell them the same thing every day? Isn't it better all round just to mix the medication with their food? And so it goes.
Can Living Wills and Advanced Directives Offer Guidance?
How can carers, families and doctors weigh up what treatment and care a person would have wanted before they developed dementia, and what they appear to want now? Advance decisions or ‘living wills' set out what treatment people would wish to accept, or refuse, at a point in the future when they are unable to make decisions for themselves. For example, someone might state that if they develop dementia and are no longer able to recognise their close relatives, then they would not wish to be given life-extending treatments. Some believe that everyone should make advance directives to cover future possible situations. Others are sceptical that people are able to fully imagine how they will feel if they develop dementia, and therefore predict the kinds of decisions they would make in that situation.
Is Deception More Acceptable in Late Stage Alzheimer's?
Deception and acceptability may seem on opposite ends of a continuum when it comes to care but we do need to take stock of why we might be thinking in these terms. Care is provided on a case-by-case basis and needs to be regularly reviewed. If the care team and relatives are advised of a situation that causes either the patient or those around them distress, they may collectively agree that some form of action could be used to alleviate pain or emotional turmoil. It then needs to be carefully monitored and reviewed as to its effects. The aim of treatment must always be to alleviate suffering rather than provide convenience to caregivers.
Does Deception Increase Caregiver Guilt and Burden?
Caregiving is hard work, emotionally and physically. You feel you can never do enough to help someone with Alzheimer's disease, at times 'dark thoughts' overcome you. Sharing decision making on important health issues such as medications, restraint, nursing home placement with close relatives, friends, health professionals and local support agencies such as the Alzheimer's Association, can help protect the rights of people with Alzheimer's. The law can also be used to clarify issues, especially where there is conflict of interests, conflict within the family.
Dissolving unilateral decisions will help minimize guilt and caregiver burden.
Published On: October 13, 2009