2015: Ethical dilemmas faced by professionals providing dementia care in care homes and hospitals
Background and objectives of this publication
This publication has been produced by a group of renowned experts and highly trained professionals in the field of ethics and dementia care, with the collaboration of a person with dementia, representatives of Alzheimer Associations and independent feedback from professional health and social care professionals in the United Kingdom, Portugal and Finland. Details of everyone who contributed towards this publication can be found in the acknowledgements section. The work was carried out in the context of a one-year project organised by Alzheimer Europe and is part of a series of projects linked to the European Dementia Ethics Network, which was set up by Alzheimer Europe in 2008.
The target group of this publication is health and social care professionals of all levels and responsibilities (frequently referred to as “you” in the text) who are faced with an ethical dilemma and concerned about finding an ethical way to deal with it.
Our aim in writing this publication is to provide materials which will:
- enable you to reflect on a range of ethically challenging situations,
- empower you to tackle any you might encounter,
- enable you to reflect on the approach you adopt and
- (if you feel the need) enable you to justify the approach you adopt to yourself and anyone who might ask.
We hope that this publication is thought provoking and will inspire valuable discussion. However, we would like to emphasise that it is intended to be used in the context of ongoing professional care training (e.g. with moderated group discussions, professional guidance and role playing). Ideally, the various information, guidelines, vignettes (short stories), commentaries and activities should be presented in stages (not all at once) and discussion adapted to the level of experience and knowledge of different health and social care professionals.
Promoting ethical care
In some care settings, the philosophy of “person-centred dementia care” has now become a stated norm for many services, even when it is not entirely clear what standard that implies. Within this approach, the focus is on supporting the wellbeing, dignity and autonomy of the whole, unique person rather than on a collection of symptoms or behaviours to be controlled. This implies that care should be suited to the needs and wishes of people with dementia and that their rights, individuality and dignity should be respected, regardless of the extent of cognitive impairment. A person-centred approach therefore benefits people with dementia by respecting their human rights and individuality, and by contributing towards quality of life and wellbeing. However, whilst there is general consensus on the need for a person-centred approach, the actual practice of person-centred care varies considerably. Health and social care professionals sometimes lack the support of their organisation in providing a person-centred approach to dementia care.
Although the wellbeing of the person with dementia must be the central concern when providing care in care homes and hospitals, this must be balanced against other concerns related to the wellbeing and rights of other people such as informal carers (i.e. relatives and friends), co-residents with and without dementia and professional carers. In everyday practice, it can sometimes be a challenge to achieve this.
As a professional carer of people with dementia in a care home or hospital setting, you may sometimes find yourself in situations in which it is hard to decide what, if anything, would be the right thing to do. It is particularly difficult to make such decisions when each possible option seems to be good for some people but not for others.
In addition, professional carers may hold very different ideas about what is (morally) right or wrong (some may even insist that they know best) and on what basis a certain approach would or would not be ethically justifiable. Such issues are further complicated when acting ethically in the context of professional dementia care is incompatible with respecting established professional and institutional procedures or formal guidelines for care.
The following scenario provides an example of a difficult situation which is quite common in professional care. As you will see, such dilemmas often revolve around values. You want to do the right thing but no one is quite sure what the right thing is and then there is the question “right for whom?”.
Mrs Grey, an 87-year-old widow, has moved into a dementia special care unit in a nursing home. The move was arranged because she was neglecting her hygiene and had frequently got lost whilst out walking around her neighbourhood at night. Mrs Grey had become increasingly frustrated with other people, including her children. In her view, they kept interfering with her life and were constantly nagging her about unimportant things. Since her admission to the nursing home, she has increasingly withdrawn from life on the unit and spends most of the day in her room, which is affecting her circadian rhythm and she has started to refuse help with washing.
Initially, nursing staff made an agreement with her that she could wash herself six days a week, and take a shower with the help of nursing staff on the seventh day. It soon became clear that Mrs Grey had a rash on her inner thighs but she hit nursing staff and called them names when they tried to help. This continued for weeks. Hypnotic medication did not calm her and the rash worsened. Finally, the doctor decided that it was necessary to wash her by force. Mrs Grey’s family was consulted about this treatment and agreed to it, albeit with some reservations. The treatment involved three members of staff restraining Mrs Grey whilst a fourth washed her. Mrs Grey got very upset. She cried, screamed and tried to break free. Several members of the nursing staff became quite emotional about this situation and could not bring themselves to participate in the washing. Others did not agree with the physician’s decision and considered it a threat to Mrs Grey’s dignity.
Some potentially challenging situations – How would you react?
As you were reading through the above scenario, you may have been thinking about how you would have reacted in that or a similar situation. In this section, we would like you to do just that.
Please read the following scenario and then answer the questions at the end in relation to this and to the vignette about Mrs Grey in section one. The idea is not to assess how well you would or would not have done in such a situation. Rather, our aim is for you to gain insight into how you approach such a situation, the issues at stake and the values you consider important or meaningful.
Sisters in a care home
Geraldine and Marjorie are two sisters who share a room in a residential care home. Geraldine was diagnosed with Alzheimer’s disease 5 years ago and Marjorie just 6 months ago. The two sisters never married and have no children. Geraldine has told staff several times that her sister and a few other people have stolen things that belong to her such as a watch and jewellery. Furthermore, she doesn’t seem to recognise her sister, sometimes referring to her as “that bossy woman over there”. Marjorie denies the allegations of theft and insists that Geraldine hasn’t worn a watch or jewellery for years since she became allergic to nickel. Some of the residents have complained that Geraldine is aggressive and verbally abusive. Some are afraid of her.
Geraldine has asked to have her own room but Marjorie feels protective towards her and remembers the promise she made to their mother that they would always look after each other. She doesn’t realise how much money they have in the bank and fears that with two separate rooms their funds would soon run out. Having seen some documentaries about abuse in care homes, she is frightened they would end up “starved and beaten in a horrible home”. They do have a niece who lives abroad and visits once a year and she insists that the problem will blow over and that her aunts should remain together. Bob, the manager of the care home, feels that he should at least contact Geraldine’s legal guardian as Geraldine has requested this. On the other hand, Marjorie has asked him not to, emphasising that her sister does not have the capacity to make such decisions and that she herself does not want a separate room. The manager is not sure what to do.
To get you thinking, we’d like you to jot down spontaneously/intuitively your initial thoughts about the following questions for each of the vignettes. The questions are not in any specific order.
- What would you do if you were one of the staff in the first vignette or Bob (the manager) in the second vignette?
- Would you have any doubts about your decision? Is there any sense in which it might not have been the right thing to do or that someone might consider it unethical?
- Do you think any of your colleagues would have reacted differently and if so, do you think that they would have been “right”?
- What is this dilemma essentially about?
- Who is affected by the current situation?
- How do you think a person with dementia would be affected by these situations/decisions?
- What are the main difficulties you found in the situations?
- What are the things that you feel of major importance when reflecting ethically about these situations?
If you are working in a group, it might be helpful to discuss your initial thoughts with your colleagues or other group members to see how their reactions to these situations correspond to your own. Please put your responses in a safe place so that you can look at them later once you have gone through this document. You may find that, in the light of what you have learnt, you would react differently or, alternatively, feel reinforced in how you already deal with ethical dilemmas.
Last Updated: Thursday 26 November 2015