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The possible transition into a care home (when continued care at home becomes problematic)

2014: Ethical dilemmas faced by carers and people with dementia

Background

Moving away from home

At some point, carers may have difficulty continuing to provide care at home and have to consider the possibility of the person with dementia moving into residential care. For people with dementia who live alone, there may come a time when they can no longer live on their own safely or they may need more care than can be provided at home.

In some countries, it is quite common for a person with dementia to be moved directly into residential care after release from a stay in hospital. This may, for example, be linked to additional care needs and perhaps a lack of suitable support. In some cases, this may be seen as an opportunity to make the transition easier. However, carers and people with dementia may sometimes feel that they were not adequately informed or involved in the decision and thus feel frustrated, angry and sad. Carers, even if consulted, may nevertheless sometimes feel guilty about the person with dementia not having been adequately involved in the decision.   

The transition into residential care can be difficult as it involves the person with dementia leaving their home, friends and familiar surroundings and in many cases a separation between long-term partners. Nevertheless, it may be seen as necessary owing to carers’ own ill health, care needs or certain behaviours which carers find difficult to manage (e.g. continence problems or frequent night time waking), lack of support, the impact of caring on other members of the family and additional health problems of the person with dementia.

If the wishes of the person with dementia are known (e.g. the issue was discussed or recorded in the context of advance care planning) or they are still able to discuss the matter, this can be helpful; but there is sometimes a discrepancy between their previously expressed wishes and their current needs or wishes. There may also be a discrepancy between promises made by carers (e.g. to provide care at home or to organise residential care when the condition of the person with dementia deteriorates beyond a certain point) and their current wishes. Moreover, problems arise when the person with dementia refuses consent or objects to moving into residential care when this is necessary. In such cases, any move must be in accordance with legislation designed to protect their rights.

Familism

With familism (see Box 1), there is an emphasis on the family unit and on the obligation to provide economic, emotional and practical support to close relatives and extended kin. The family may be seen as an extension of the individual, and individual behaviour as a reflection of the whole family. It may therefore be particularly difficult for people who share this core cultural value to consider a relative moving into residential care, irrespective of there being reasons which might otherwise seem wise, justifiable or understandable. Carers may have a strong wish to provide the kind of care and support which they feel is only possible at home, and feel guilty about the person with dementia moving into residential care. They may also have fears about how other people within their community might judge their family.

Confidentiality

Once the person with dementia is living in a residential care facility, relatives and carers who visit may sometimes be consulted by professional carers about care issues, especially as dementia progresses and the ability to communicate deteriorates. This may at times result in personal information being shared with people who do not have a legitimate or legal right to be informed and who may feel awkward about the disclosure of certain details (e.g. linked to sexuality, continence problems and other issues which transgress the boundaries they have with a relative or friend).

Ongoing and new relationships

A move into residential care can affect relationships owing to the physical distances involved but also the difficulty in maintaining the same kind of emotional contact in the light of cognitive deterioration and adapting to a different way of life. New relationships may develop on both sides. However, there may be concerns about people with dementia having capacity to consent to a sexual relationship, mistaking the other person for an existing or past partner or (in residential homes) mistaking their room and bed for another’s.

In some care homes, measures are taken to intervene and residents not given sufficient privacy for emotional or physical contact. This denies them the fundamental human right to engage in an adult relationship. Informal and professional carers may feel justified in taking such actions if they feel that the people concerned lack the capacity to engage in such a relationship, but there may also be value judgements involved, as well as family loyalties, and assumptions that older people should be asexual.

The move into residential care often relieves carers of the necessity to provide care but also takes away the opportunity to show their love and affection for the person with dementia.  Care homes have different policies with regard to their involvement and professional carers may appreciate the involvement of families to a greater or lesser extent.

Ethical issues at the time of the possible move into residential care

The main issues at the time when a move into residential care is being considered, which might have ethical implications, include the following:

  • when the person with dementia objects to or lacks the capacity to consent to residential care but care at home is no longer possible or feasible,
  • when there is a discrepancy between former and current wishes or promises of people with dementia and carers,
  • confidentiality and the involvement of carers in decisions affecting the lives of people with dementia,
  • when individual needs and wishes are in conflict with family values,
  • when people with dementia and their carers make new relationships.

Vignette

Mr Brown is feeling very tired and when he comes down with ‘flu, his GP suggests he needs a break, and says local services can arrange for his wife to have a week in a care home. She is adamant she doesn’t want to go. Their daughter arranges to take her. She pretends she is just taking her for the day and says she will be back later without telling her she means a week later. She feels guilty but she thinks she had to do this to protect her Dad’s health.

Mrs Brown eventually comes home, feeling quite disorientated and disempowered by her experience. She gets her husband to promise never to let her go again. Their daughter steps in to give higher levels of support. Eventually it gets too much for Mr Brown but he remembers his promise. Mrs Brown becomes extremely disorientated, sometimes not realising that she is at home and asking to be taken home. She does not recognise her husband and often tells him that “her husband” wants to throw her out of her home. Mr Brown feels uneasy about initiating legal proceedings to have her admitted to a home against her will. She stated in her advance directive that she would like to go into care if ever her husband was unable to look after her. Despite her previously expressed wish and the likelihood that she now lacks the ability to decide whether to go into a care home, she is expressing a strong desire to stay at home. Her daughter thinks it would be best to do like they did before and to take her to a care home without telling her.

Ethical commentary by Dr Michael Dunn (United Kingdom)

Disagreement has arisen between Mr Brown and his daughter about the possibility of Mrs Brown going into residential care and about what would be best for Mrs Brown. Such disagreement is not uncommon and family carers must be able to discuss, and make progress in resolving, decisions like this one. It is a long-established ethical principle that people should be allowed to make decisions about their own lives, regardless of diagnosis. However, people with dementia will, over time, lose the ability to make one or more decisions about their care. This looks to be the situation here. Mrs Brown is confused and does not look able to understand or process information about her life at home, or the pros and cons of moving into a care home.

If it is established that Mrs Brown cannot make this decision then it needs to be made for her in accordance with relevant legal requirements and involving her to the greatest extent possible. Nevertheless, it is not an easy decision to make. The difficulty looks, at first glance, to be an ethical tension between Mrs Brown’s expressed wishes prior to the onset of dementia, and her current expressed desire to stay at home. However, if what she is saying now is borne out of confusion, it might not reflect her own considered judgements about what would be best for her. As such, it does not have the same moral force as it would have if she retained the ability to decide for herself.

Instead, it is Mrs Brown’s current and future well-being that needs to be considered. Mrs Brown gets very distressed by the thought of moving into a care home, and Mr Brown and his daughter are aware that she did not have a pleasant experience in the care home previously. Deciding to uphold Mrs Brown’s previous wishes would mean acting in a way that knowingly causes her distress. Such a step does not look to be one that would make life better for Mrs Brown.

There is no easy answer to whether Mrs Brown’s well-being or her previous wishes should be prioritised. How this balance is struck will depend on the degree of distress that is likely to be imposed on Mrs Brown. It will also depend on the importance of the issue at stake to her. It may also be possible to lessen the harm that is caused to Mrs Brown, if the decision is made to move her to a care home. Deception is one such technique that could be adopted, though there is evidence here that this approach did not succeed in pacifying Mrs Brown previously. Another option might be to prepare Mrs Brown’s bedroom in the care home in such a way that it replicates her bedroom at home. Likewise, if Mr Brown and his daughter accompany Mrs Brown to the care home and spend significant time with her upon her arrival, she might be less confused by a sudden change in her living environment.

The balancing act in situations like this one should also be sensitive to other ethical values that are relevant to the decision. Here, Mr Brown and his daughter envisage difficulties providing care if Mrs Brown remains at home. They may of course want to try but if not, they should not be afraid to recognise that what they want for their own lives can also legitimately be considered. It is not ethically viable simply to exclude the interests of Mr Brown and his daughter as being irrelevant in making decisions like this one.

Vignette

My father has been living in a care home for five years. He and my mother split up 10 years ago but are still officially married and she is his legal guardian. She visits once a month. I don’t think he recognises her and sometimes he doesn’t recognise me which hurts but I understand. He seems to appreciate my visits.

I recently noticed that he often sits with a particular lady and they seem very close. She sometimes puts her hand on his arm and he looks at her lovingly. I didn’t think much about it until one day a nurse asked to talk to me in private. She explained that my father had been “caught in bed” with this lady, that such behaviour could not be tolerated and basically, what was I going to do about it? I was irritated by her tone of voice and attitude. I also felt a bit awkward. So I just laughed and pointed out that they were both adults.

She drew my attention to the fact that he was married and that neither he nor the lady in question had the capacity to consent to a sexual relationship. I didn’t want to go into the details of my parents’ relationship but felt the need to protect my father’s interests. I wondered on what basis she had determined that he or the lady lacked the capacity for a relationship involving sex and what right she had to intervene in such private matters and involve people, like myself, who had no business in knowing such intimate details. I don’t like the way this issue is being handled. I have asked to speak to the manager of the home. I know how I feel about it all but am not sure whether I would be right in arguing that my father and the lady have a moral and legal right to pursue this relationship and should not be prevented by staff from doing so.

Ethical commentary by Prof. Chris Gastmans (Belgium)

Ethical problems relate to the tensions between the responsibilities of people who live and work in a network of relationships. In this case, the ‘relationship web’ consists of the father himself, his beloved lady, his wife and daughter, the nurse, and the management of the nursing home. To do justice to deciding how to respond to the father’s new relationship, it is important to understand the experiences of the father, his family and the nurse because the father’s wellbeing should be considered in the context of this ‘relationship web’. Because of the intimate and emotionally sensitive nature of the father’s behaviour, the relational network has been put under pressure. To reduce the pressure, a solution has to be found that would satisfy all parties. The fact that all concerned could claim certain rights is not a deciding factor. Attention should not be paid to the father’s right to sexual expression, or the possible claim of his family or his caregivers, or indeed the balance between all these rights, in this situation the people involved need to pay attention to their relational bonds. The ethical decision-making process therefore demands great skill from all those involved because each person has a relationship and perspective that brings its own story: ethical decision-making therefore is achieved through dialogue (i.e. discussion) and interpretation (i.e. achieving a shared understanding that makes sense of the different perspectives).

Let us focus on the opinion of the nurse as an example. What does she really want? On what ethical values is her opinion based? It seems that she adheres to the dominant ethical model regarding sexual behaviour in older people in care. According to this model, the principle of respect for autonomy in particular is a dominant factor in assessing the moral permissibility of sexual behaviour.

Respect for autonomy tends to be understood in terms of protection of the individual’s right to self-determination, most visibly expressed in the concept of informed consent. Whether or not sexuality is labelled as appropriate mainly depends on the resident’s capability to consent (23). Because dementia is marked by progressive deterioration affecting reasoning capabilities, people with dementia may be seen as falling short of the ideal of the ‘autonomous agent’ on which the principle of informed consent is based. This, in turn, seems to negate their right to sexual engagement. However, as the daughter points out, the capacity of her father to make decisions about his daily life and the expression of his own sexuality might easily be underestimated when focusing solely on the ideal of human autonomy as expressed in the notion of informed consent. Sexual engagement is based on more than rational decision-making alone (24; 25).

It is a pity that the nurse did not take time to have a proper conversation with the daughter during which they could have explored their viewpoints in order to better understand each other. During their conversation, the daughter could also have asked the nurse why she had confronted her with these intimate details about her father, as the disclosure of a resident’s sexual behaviour to family members may not be as unproblematic as it might seem.

Clinical ethics is mainly seen as an ethics of individual relationships between patients, family members and caregivers. However, a careful reading of the case makes it clear that the father’s intimate relationship cannot be seen as an isolated form of interaction. On the contrary, it is situated in a wider informal and formal care process, which includes his family and the team of caregivers who are also part of a nursing home. A person-centred care approach can only be accomplished within a care home context that supports nurses to deal with ethically sensitive issues such as the sexuality of older people. Supportive interventions that could be offered in this regard are educational interventions on sexuality amongst older people, experience-orientated learning programs, and the development of a formal care home ethics policy on dealing with expressions of intimacy and sexuality by residents with and without dementia (25).

 

 
 

Last Updated: Monday 08 February 2016

 

 
 

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