Caring and coping in ethically challenging situations
2015: Ethical dilemmas faced by professionals providing dementia care in care homes and hospitals
Values, principles and theories
When trying to decide what is ethical (i.e. morally good and right), we tend to rely on shared norms and understandings of right and wrong. In other words, we bear in mind values which have been defined by society as a whole, which we have picked up from other people (e.g. from our parents, through our education, through our relationships with others and through our culture). However, we need to be able to reflect critically and with compassion on what is right and wrong in a particular situation. Often, things are not intrinsically right or wrong. For example, we might have learned that stealing is wrong. However, imagine that there is a widower who is unemployed and needs to find food for his four children. Some people might feel that he would be justified in taking two loaves of bread but only paying for one. Such reflection may challenge the way that values are defined and interpreted within society. The end result of such reflection may be to question why something is done in a particular way, to voice concerns or to take some kind of action.
Ethical principles, values and related concepts
To help us weigh up the right way to act, we can also consider general principles such as autonomy (being independent and able to decide what should happen or be done to you), beneficence (doing good), non-maleficence (avoiding harm) and justice or equity (treating people equally and fairly). These were initially developed and used in the context of medical care and treatment as standards to promote honourable behaviour by doctors towards their patients. They have since been applied in a wide range of social contexts. These principles are not based merely on the desire “to be nice to people”, but also on the recognition that people have rights (e.g. to decide for themselves, to be treated fairly and not to be harmed). There are other principles and values which are equally important in both medical and non-medical settings. These include trustworthiness, honesty, integrity, compassion, promoting well-being, confidentiality and respect for privacy, personhood and dignity. At the end of this report, in Appendix 1, you will find a table of definitions.
It is worth noting, in passing, that there has been a good deal of work looking specifically at values and the role that they play in our decision making. This has led to the approach called values-based practice (VBP), but sometimes called values-based medicine (VBM) to make the comparison with evidence-based medicine (EBM) (Fulford, 2004). VBP makes the point that just as facts are important so, too, are values. Values are complementary to facts; and they are everywhere. We must understand the facts – all of them (or as many as possible) – in order to make sensible decisions; but, similarly, we need to understand the values – all of them (or as many as possible) – in order to make ethical (good or right) decisions. This means that the values of all concerned need to be heard: they need to be set out as clearly as possible and considered seriously. VBP is an approach which raises a variety of issues, from theory to practice (see Fulford, Peile and Carroll – 2012 - for further information).
Finally, we sometimes try to work out what would be ethical based on ethical theories or approaches. Some of these were developed by philosophers thousands of years ago but they are still highly relevant. Many people reason in this way without necessarily knowing anything about the underlying theories. Examples include:
- the consequentialist approach - doing what is defensible based on outcomes which maximise people’s happiness or welfare; the end more or less justifies the means,
- the deontological approach - acting in accordance with our duties as rational and interdependent individuals living in society; the emphasis is on the character of the act itself rather than on the outcome,
- the rights-based approach - doing what best protects and respects the moral rights of those affected; the more serious the violation of a person’s rights, the more unethical the act,
- the fairness approach - treating everyone equally, or if unequally then fairly, based on a standard that is defensible,
- the common good approach - doing what would contribute towards the good of the community; we are all part of a larger community,
- the virtue approach - acting in a way that is consistent with what a virtuous person would do; the emphasis is on the character of the agent rather than on the nature or consequences of the act itself.
Each of these approaches might be used to understand a situation and to consider the best ways to move forward. Thus, each of the people involved in a given situation might think and act according to a different approach. We should allow for acceptance and reflection on different points of view. “Ethics in action” (i.e. in daily practice) emphasises practical reasoning, i.e. understanding how to achieve your moral goals, as well as deciding what the moral thing to do should be in the first place. Please see Appendix 2 which includes a short vignette for each of the above-mentioned approaches.
Look at your responses to the vignettes about Mrs Grey and the two sisters. Do your responses seem to connect with any of the principles or approaches mentioned above? If so, which ones? If not, which other factors affected your assessment of the situation and your idea of how to approach it?
General guidelines to facilitate ethical decision making
Taking into account the complexity of the situation
You might still be unclear as to whether your approach would have been ethically defensible or whether a different approach might have been “more ethically grounded”. Making judgements by relying solely on values, principles and theories can be problematic. Such concepts raise numerous questions, such as what is the most good and the least bad for people, which moral rights should be protected, what makes a person virtuous, when is unequal treatment defensible and does everyone have the same definition of dignity?
However much we want to do what is ethically good and right for those in our care, there are also many restraints that impact on what is possible. We therefore need to recognise that we are not all-powerful and need to accept that we cannot always achieve what we would have hoped for with regard to the people we care about, however much we try. Longneaux (2014) calls this the need for humility. Nonetheless, it is usually helpful to tackle ethical dilemmas within an ethical framework and in a systematic manner, taking into account the unique nature of the situation and of everyone involved. This will help ensure that whatever action you take (if indeed action is to be taken), you can defend your decision as being what was right/ethical in that particular situation, at that time and for the people involved, including yourself.
An ethical framework to guide reflection
There are several possible ethical frameworks which might guide your reflection. We have chosen the “dignity-enhancing framework”, developed by Chris Gastmans (2013), combined with Julian Hughes and Clive Baldwin’s (2006) concept of “conscience-guided reflection”. The key elements of this combined approach can be summarised as follows:
- The lived experience
Every person is different and every situation is different. A person’s “lived experience” is the way he or she experiences a particular situation or difficulty. Even in situations which seem quite similar, people’s “lived experience” is different: people make sense of similar situations in different ways and have different emotional reactions and concerns. These lived experiences can be considered as the starting point of ethical reflection.
- The interpretive dialogue
Often, it is not clear what people want or what is important to them. It might not even be clear in their own minds. Sometimes, people might seem to be quite ambivalent (having mixed feelings or contradictory ideas) about issues which we consider vitally important. A person with dementia who has agreed to move into a care home might, for example, show no interest in the location of the care home even though the choice of location would determine whether or not his/her family and lifelong friends would be able to visit regularly and despite repeatedly saying how much he or she values those people. Dementia has an impact on the ability to understand and communicate which often makes it difficult to determine what is important and meaningful to someone. For this reason, it is important not to take what a person says unquestioningly at face value but to allow time for discussion. We need to consider people’s feelings, their fears, their understanding of the issues at stake and their personal histories, known values and character. In this way, we not only listen to the people involved but also accurately interpret what they mean and what is important to them.
- The normative framework
Behaving ethically and dealing with ethically sensitive situations involves reference to some kind of normative standard (i.e. an agreement as to what is good and bad, ethical or unethical). In this respect, ethical principles, values and theories are important. However, as we noted above, presuppositions about what is good, bad, ethical and unethical can lead us into traps because normative standards evolve and change over time (they are constantly being defined, redefined and challenged) and also because each situation is unique. Similarly, there is sometimes a tendency to focus on what is wrong or unethical (e.g. undignified care) but equal attention should be paid to reflecting on what is ethical (i.e. taking a positive, proactive approach to respect dignity).
- Informed conscience
Hughes describes conscience as “our personal, inner judge of what is right and wrong, informed by shared understandings and practices”. Hughes and Baldwin suggest that conscience is objective (i.e. not just a matter of inner, personal judgement) when it is informed. An “informed conscience” is acquired through education, upbringing and openness. The use of conscience implies an openness to the views of others and a willingness to have our preconceptions challenged. Our informed conscience can be helpful, not only inasmuch as it sometimes provides direct solutions, but also in guiding us through discussions with others and ourselves. It can help us to determine what the important issues are and how to interpret and understand people’s lived experiences. If our conscience “pricks” us, it implies we need to consider what we are doing afresh, in the light of the lived experience, interpretative dialogue and the normative frameworks within which we live.
Structured approach to tackling ethical dilemmas in daily practice
Action is not always required when faced with a problematic situation. Sometimes, we just need to be clear and able to justify to ourselves and others that what we are already doing or not doing is, from our point of view, ethically defensible. However, when it is unclear what would be right or wrong in a particular situation, it is important to approach that situation in a structured way in order to consider the complexity of it and move ahead. Having already considered abstract concepts such as values, principles and ethical theories/approaches, we now propose a structured approach, consisting of eight components, to help you to reflect on a situation you are facing and to come to a decision. It may be helpful to move through the components in a fairly linear fashion, but to be flexible and move backwards and forwards between them as you gain new insight into the situation and gradually develop your ideas in the context of the specific situation you are addressing.
These components are targeted at health and social care professionals of all levels and responsibilities (e.g. qualified, unqualified, registered, unregistered etc.) who are faced with an ethical dilemma and concerned about finding an ethical way to deal with it. You might work through them alone or you might have the opportunity to work through them with your colleagues (e.g. in the context of a team meeting or together with your manager). Every person working in a nursing home or hospital setting has an ethical responsibility towards the people with dementia in their care. Solutions to ethical dilemmas cannot be achieved solely by objective reasoning but must also come from within and result from dialogue. Consequently, we often address “you” (as an individual and as the reader) but emphasise the need for dialogue and the need to work together with everyone concerned towards a solution.
Depending on your place in the organisational hierarchy, you might not have the authority or power to take action. Your involvement in such cases would then be more to support those who do by contributing towards a better understanding of the issues at stake and of the ethical implications of various courses of action, if action is needed. You might not have the mandate or the means to change a whole system. However, through your behaviour (acts as well as attitudes), you are able to contribute to the ethical treatment and care of people with dementia.
In Appendix 3, you can find a “checklist for reflecting on ethical dilemmas and ethically challenging situations”. It may be helpful for you to use this form (in a flexible way) to structure your thinking process and ethical deliberation. You could either use this on your own or together with your colleagues. For example, you might find it helpful to use the form to keep a note of your thoughts as you reflect on a particular situation. Alternatively, you might use it as a means to structure and record discussions about such a situation in a team meeting, led by yourself or the person responsible for team meetings in your organisation.
Finally, we understand that sometimes it is necessary to react, and even to take concrete action, immediately, on the spot. In such cases, ethical reflection based on dialogue may have to follow the action but may nevertheless contribute towards understanding why and how the situation arose, whether the solution was/is ethical and whether any further action is needed.
Component 1: The situation
What is the particular situation that is being considered?
Try and write down a clear sentence that sets out what you are focusing on. This helps bring you from a vague notion to a definite issue.
Component 2: The people involved
Who is involved in this situation?
Identify all the people who are directly or indirectly involved in the situation (including those who may have contributed towards its cause and those who may be affected by it) as well as those whom you feel you need to involve.
Component 3: The context
What is the context in which the situation occurs?
Consider the particular situation (e.g. when did the problematic situation start, where is it taking place, how is it evolving?) and identify the institutional and societal context in which the situation occurs. Are there any relevant laws or organisational procedures which should be considered? Are there any institutional ethics policies or professional guidelines which should be taken into consideration?
Component 4: How the situation is experienced
How does the situation seem to be experienced by everyone involved?
This component is about identifying the lived experiences of everyone involved. This should include the person with dementia but also a range of people such as co-residents, other health and social care professionals, the management and informal carers etc. Please think about how the people involved might experience this situation (taking into consideration what you know about them and their lives).
Component 5: The dialogue with everyone concerned
What can I learn from dialogue with the people involved?
Communicate with the people involved and affected by the situation. Listen to what they are telling you, see what they do, try to understand what they mean, what is important to them and whether some have conflicting loyalties or interests. Try to facilitate discussion so that those involved can recognise and express their own needs and interests, and are able to understand other people’s perspectives. Measures may need to be taken to maximise the ability of people with dementia to communicate their needs. Ideally, part of this dialogue should also be with other health and social care professionals who are not necessarily directly involved but may be able to offer support and advice. These could be your peers or members of your organisation’s ethics committee (if you have one).
Component 6: Key values and principles
What are the key values and principles?
Reflect on the values and principles which you feel are related to the current dilemma and possible outcomes based on your understanding of the people involved, the situation and what you have learned from the dialogue. There are several questions you could ask yourself such as:
- What are the main values and principles (see section 2 and Appendix 1) here (e.g. is this mainly about dignity, autonomy or personhood as so forth)?
- How do these values and principles relate to the different people involved?
- Do they have the same meaning and the same level of importance for everyone (e.g. is trustworthiness the main issue and does it mean the same thing to the doctor as it does to the informal carer or to the person with dementia)?
- Are some more relevant or more important than others in this particular situation and for these people?
Component 7: Realistic option / what to do
What are my realistic options and what am I actually going to do?
For many people, the crux of the matter is “what should I do…. or not do?” Hopefully, the above-mentioned components will have provided you with the information needed to enable you to weigh up the pros and cons (arguments in favour and against) and the risks and benefits of different possible options for the particular people involved and in this particular situation (including organisational and procedural constraints). The dialogue with the people involved and consultation with your peers will hopefully have made it clear to you why some options might be more suitable than others in this particular situation. Consider what you think of different possible solutions based on different arguments. Eventually, you will need to determine which of the different options are actually realistic and achievable. Then, you can try to balance/prioritise them and consider how they relate to your own conscience and moral background.
When you have gone through the various components and feel that you have fully examined the options available, make a decision based on what you personally think and feel is “right”. Act on your decision in the knowledge that you can justify to yourself and other people any decisions made, should you feel the need to do so, and that you can communicate your decision to the people involved.
Component 8: Justification and what can be learned with hindsight
Why did I take that approach and what can I learn with hindsight?
The decision you made might not have suited everyone. You might have hoped for another outcome. However, it is important to remind yourself of the effort you made to understand the issues at stake, the complexities involved and the different, often conflicting needs and interests of the people involved. You made a decision which you felt was the best one for those people in that situation.
As the situation unfolds and evolves over time, you might feel with hindsight that another solution would probably have been better. However, it is not always possible to wait and see. You may be able to learn from your experience of how things developed and take solace in knowing that you did your best with the knowledge, skills and possibilities that were available to you at the time.
 See Appendix 1 for more comprehensive definition
Last Updated: Thursday 26 November 2015