a) Place of residence

To illustrate each of these issues I shall start with a fictional vignette. These are scanty in terms of detail; they are only intended to orientate us to the particular problem.

Mr. Bentley was admitted to hospital with confusion caused by a urine infection. The urine infection was treated, but he remained confused. Neighbors and family report he has been «wandering» in the street late in the evenings for some while. Is it safe, therefore, for him to go home, where he lived with his wife for the 50 years of their marriage?

This raises the issue of residence capacity: whether people have the ability to make decisions about where they live. It is a very real issue every day in all major hospitals. Older people like Mr. Bentley might simply have an acute confusion, a delirium, which will settle given more time; but he might have dementia. Even if he does have dementia, it might still be possible for him to live at home with the right sort of support. Still, he is now at risk of being deemed to lack the capacity or competence to make this decision, in which case he might be moved against his will to live in a care home, with little chance of getting back to his own home with all of its memories.

There have been a number of court cases around this issue in the United Kingdom (UK). The House of Lords looked in 2014 at how the law which governs decision-making capacity in England and Wales -the Mental Capacity Act 2005- was working ⁽⁴⁾. Although they felt that the law had good intentions, they felt it was not being implemented well. One of their conclusions is likely to be relevant in other countries and jurisdictions: «the prevailing cultures of paternalism (in health) and risk-aversion (in social care) have prevented the Act from becoming widely known or embedded». In other words, because doctors tend to feel they must protect their patients, such as Mr. Bentley, and because social workers are inclined to avoid risks and legal action by relatives, the easiest option will be to put him in a care home ⁽⁵⁾. For Mr. Bentley, however, this might be felt as a great blow to his self-esteem: as if he and his feelings no longer matter. He is helpless in the face of the professional and societal pressure to keep him safe.

b) Forced care

Mrs. Jones, with marked dementia, is doubly incontinent, but refuses to let anyone change her when she is soiled. It is upsetting for staff to know that she is heavily soiled, and residents and their families are starting to complain. This leads to Mrs. Jones being ostracized and, indeed, there has been increasing verbal aggression towards her, with people calling her names. Staff are split about what they should do.

This can be a very delicate decision for care staff and families. Mrs. Jones wishes to remain in control of her life, especially her personal life, but it seems that she now lacks insight into the nature of her problems and the effects they are having on others. For staff not to force the issue (presuming they have used all their skill to get her to wash herself or to be helped in a kindly manner) seems to be to risk her safety (i.e. the risk of infections or the risk of aggression from other residents) and undermine her dignity. To use force, however, might feel to the staff (and others) as if they are assaulting her. To strip her naked against her will seems like abuse and undermines her standing as a person. Staff will often require a good deal of support to encourage them to intervene in a safe and legal manner in order to protect Mrs. Jones ⁽⁶⁾.

c) Covert medication and truth-telling

Joseph Leblanc, the former managing director of a Canadian haulage company, does not believe there is anything wrong with him. As well as dementia, he has heart failure and if he does not take his medication, he becomes progressively short of breath, very distressed, and sometimes aggressive. Staff in his care home have discovered that if they put his medication in pudding, he eats it without complaint and remains stable. When stable he is content and seems to enjoy life. A new member of staff feels that the use of covert medication is deceitful and wrong.

There are two related issues here: that of concealing medication and the circumstances (if any) when this is justified; and the broader issue of truth telling. Many countries will now have guidance, especially for nurses, about the circumstances under which drugs can be concealed in food and drink -usually as a last resort and only if properly documented-. The issue, however, is certainly an ethical one ⁽⁷⁾.

Lying to people with dementia is also a significant problem. It takes many shapes and forms, from not telling the truth about the diagnosis to deception about the care that is to be provided for the person (e.g. going into a care home); from telling the person that a particular relative is still alive when they died some while ago to providing false environmental cues (e.g. a fake bus stop at which the person waits with the illusory promise that he or she is going somewhere). Sometimes the absolute truth can seem hurtful, but a blatant lie seems insulting to the person.

In a report on this issue, the Mental Health Foundation ⁽⁸⁾ came up with a continuum, as shown in Figure 1. The suggestion is that you should always start as close to truth telling as possible. If you have to deviate from this, you should do so only on good grounds and you should move down the continuum in steps, unless there are good reasons not to. For example, if it is already known there will be a catastrophic reaction, say, to «looking for an alternative meaning» (i.e., trying to understand the emotions that are being expressed), then it might be better to use «distracting» immediately. Even so, best practice is that staff should keep care plans for decisions which involve any form of deception.

Source: Own elaboration.

Figure 1 A continuum from whole truth to blatant lies ⁽⁸⁾. 

d) Sexuality

Mrs. Gauthier was new to the care home for people with advanced dementia, but within days she had struck up a friendship with Mr. Wong. Both were married and their spouses visited daily. Their spouses were disconcerted to discover that the relationship seemed to be deepening. Devout Catholics, both had always been faithful to their respective spouses. After three months, members of the staff had to let the families know that Mr. Wong had been found naked with Mrs. Gauthier in her bed. Mrs. Wong is upset but accepts that her husband needs companionship. Mr. Gauthier is furious and states that Mr. Wong is a predator and a dirty old man who should be booted out of the care home.

Sexuality in older people is prone to elicit ageist attitudes which are compounded by stigma when it comes to people living with dementia. In cases like those of Mrs. Gauthier and Mr. Wong, the initial reaction can often be a legal one, and it can also be a sexist one. The man is often seen as the perpetrator and, given that a question arises about the woman’s ability to give fully informed consent, it is often then alleged that such cases amount to rape. Hence the police are informed, and matters become very upsetting for everyone.

It may, after all, be that a rape has indeed occurred. On the other hand, it may be that Mr. Wong genuinely believes that Mrs. Gauthier is his wife, and perhaps she initiated the sexual activity. They might both believe that they are a young unwedded couple and be quite shocked at the fuss being made. An issue in itself is how capacity to consent is assessed in such situations, especially if the residents in the home have communication difficulties. Issues around sexuality also include gay and lesbian relationships and the attitudes of staff and other residents to homosexuality or transgender issues and so on.

If, on the one hand, such dilemmas are viewed through a legal lens, they can also be seen, on the other hand, as having to do with intimacy and the human need for comfort and close reassuring relationships ⁽⁹⁾. The reality, however, is that our responses to human sexuality and intimacy, which will include attitudes to masturbation, pornography, fetishes and so on, are varied. We know that sexuality and the need for intimacy are intrinsic to our nature as human beings, but in vulnerable groups, there will inevitably be some caution in allowing certain sorts of activity. The ethical dilemma, as is the case so often, is in deciding in particular cases where lines should be drawn so as to allow full expression of sexuality and intimacy without allowing abuse to occur.

e) Food and drink (withholding and withdrawing)

Miss Cote is in the severe stages of dementia. Her swallowing is becoming increasingly compromised. She chokes and has already had several chest infections. She lives at home and has caregivers coming in to feed her, but this is taking longer and longer. It is suggested by her general practitioner (GP) to the family that she should be given a percutaneous endoscopic gastrostomy (PEG) tube to put the food and drink directly into her stomach. This will require a hospital admission. Her family would rather, whatever the risks, that she should continue to be fed by hand. Her carers, however, are alarmed by her choking.

Cases like Miss Cote’s are not unusual. Again, the ethical issue is real. It is the issue of withholding or withdrawing investigations or treatment. Similar issues arise in various circumstances in dementia, not just in connection with swallowing, but also regarding the use of antibiotics or around judgements concerning cardiopulmonary resuscitation ⁽¹⁰⁾.

There is, however, a well-established doctrine, that of ordinary and extraordinary means, which can be helpful in facing these dilemmas. The doctrine can be stated as follows: we are not morally obliged to carry out an investigation or treatment if it can be regarded as extraordinary; it is extraordinary if it is unlikely to work and if it is burdensome to the patient.

In the case of Miss Cotes, we can say that the PEG tube is unlikely to achieve its aims ⁽¹¹⁾, and it is burdensome in that it involves an anaesthetic and a variety of risks (e.g. of infection and bleeding). Thus, it can be regarded as extraordinary treatment and there should be no moral obligation to pursue the use of PEG feeding in this case. Similar reasoning can be used for cardiopulmonary resuscitation. The use of antibiotics in severe dementia is more complex because it is more debatable whether or not antibiotics are efficacious. For, even if they do not effect a cure, they can be used in a palliative manner ⁽¹²⁾. If their use, however, were to require admission to hospital to place an intravenous line, it could also be regarded as too burdensome for a particular patient.