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The process of understanding/finding out (diagnosis)

2014: Ethical dilemmas faced by carers and people with dementia

Background

Who wants to pursue a diagnosis?

As explained in the previous section, people with dementia are not always the ones who take the initiative to seek diagnosis as sometimes they are unaware of their difficulties or not ready or willing to find out about the cause. Some may nevertheless feel under pressure from relatives and even doctors to do so.

Often, the diagnostic procedure is initiated by a person’s relatives or doctor. Relatives and friends may be concerned about the safety or wellbeing of the person with dementia or feel that they need support. Doctors may notice possible symptoms of dementia, especially in patients they have known for a long time. However, doctors do not always follow up on this due to a number of factors such as inadequate training and experience, lack of time, insufficient knowledge about medication and support, stigma and difficulties broaching the topic. Relatives and friends may also find it difficult to broach the topic with the person with dementia.

Who should be informed?

Most codes of medical ethics and patients’ rights legislation recognise a person’s right to be told the diagnosis as well as their right to decide not to be informed. On the other hand, under exceptional circumstances, a doctor may withhold a diagnosis from a patient. In practice, carers sometimes ask doctors not to inform the person with dementia of the diagnosis. Other carers may be informed of the diagnosis by the doctor and left with the decision and task of telling the person with dementia themselves.

What is the impact of finding out that you have dementia?

Some people with dementia and carers have reported feeling shocked when told the diagnosis and have not been able to take in all the information given.

"We were diagnosed over two years ago but can still remember those first shattering feelings – shock, disbelief, fear, shame, feeling cut off… and feeling very alone. Your brain feels numb and you can’t take it all in ... . But take heart, these first terrible feelings really do pass. We know – we’ve been there." (Pat, James and Ian from the Scottish Dementia Working Group)

Others have experienced almost a sense of relief at finally knowing what was wrong. A range of reactions is possible such as guilt (e.g. linked to how the person with dementia was treated in the past and for possibly having blamed them for things which with hindsight were not their fault), sadness and grief about what has and may well be lost as a consequence of dementia and anger. Disclosure of the diagnosis of dementia occurs at a specific time but the impact of the diagnosis is experienced over time as people gradually realise what it means to have dementia and how this affects their life and relationships.

The impact of the diagnosis may also be affected by whether it occurs at a time when it is beneficial to those concerned. For example, a diagnosis might be considered as being too early if it leads to radical changes in someone’s life, severe emotional disturbance and no real “solution”, but timely if it results in access to support, puts an end to confusion and worry and enables people to make decisions about their future lives, relationships and care. What is timely for one person may be premature or too late for another and in keeping with the point about the impact being a process, people may need time to come to terms with the diagnosis.

Ethical issues during this process of understanding/finding

The main issues during this process of understanding/finding out, which might have ethical implications, include the following:

  • whether to refuse to pursue a diagnosis or to be informed of the diagnosis (i.e. the person with dementia),
  • whether, and if so when, other people (e.g. relatives and doctors) should initiate the diagnostic procedure on behalf of the person with dementia,
  • whether it is right to withhold the diagnosis from the person with dementia and/or to inform other people.

Vignette

Mrs Whitby’s next-door neighbour, John, had dementia and from the first symptoms onwards, he was very open about it. He consulted his doctor, had tests and talked to his family, friends and neighbours about the whole process and the outcome. Later, Mrs Whitby had concerns about a few difficulties she was experiencing and suspected that she might be starting with dementia too. She talked to John’s wife, Elsie, about it but no-one else. Elsie understood her need to confide in someone and respected her desire for privacy.

Mr Whitby had learnt a lot about dementia from John and had noticed subtle signs which prompted him to ask his wife about it.  She was not ready to address the issue and denied having any problems. She feared that a diagnosis would change her whole life, practically and in terms of her self-image and relationships.

Mr Whitby had to go to the doctor’s on his own behalf anyway. Whilst there, he took a moment to tell the doctor about his concerns about his wife. As a result, next time Mrs Whitby had to attend the surgery, the doctor asked her about her memory and suggested a referral to the memory assessment service. She was mortified and thought it must be really obvious for him to have asked. Although she didn’t know this was triggered by her husband, he felt guilty and awkward about having gone behind her back. It was several months before a full diagnosis was made during which time Mrs Whitby’s condition had deteriorated somewhat. Nevertheless, she was adamant that she did not want to know the diagnosis although she had not discussed this with her doctor. Her husband, on the other hand, felt that he had a right to know.

Ethical commentary by Prof. Cees Hertogh (the Netherlands)

Living with dementia in a society that sets great store by rational self-sufficiency and that views dementia as a ‘loss of self’ is extremely challenging. In view of these societal prejudices, Mrs Whitby’s fear of how a formal diagnosis of dementia would affect her life and her relations is quite understandable. In addition, she is experiencing signs that further add to her fear and that threaten her sense of self – so to say – from the inside. Also, since dementia is an incurable disease, she might be wondering whether there is any point in getting a medical diagnosis.

From the standard ethical perspective with its emphasis on the principle of autonomy and individual rights, we cannot but respect Mrs Whitby’s attitude. For although people have a right to know and to be informed about their health and medical condition, this right is there in the first place for those seeking medical information and for those who are willing to accept medical assessment. In other words, the right to know does not imply a duty to be informed. Such a duty only arises, when not-knowing and persisting in ‘not willing to know’ might entail serious (health) risks for Mrs Whitby or others/third parties. This might, for example, be the case if the signs Mrs Whitby was experiencing, and/or the signs her husband had noticed, were of such a nature that car driving would be risky. This would face Elsie and Mr Whitby with the obligation to subordinate Mrs Whitby’s right to privacy to her safety and the greater good of the safety of others. In other words, others don’t have a right to intervene in Mrs Whitby’s privacy and to deny her wishnotto have a memory assessment, unless respecting this right results in endangering herself or others. In the present situation, however, no such danger exists.

This standard ethical approach to the situation of Mrs Whitby focuses strongly on individual rights and duties but neglects the relational perspective. Conversely, from a care ethics approach, the central question would not be how best to respect the rights of the people involved in the situation. Instead the ethical question would be to know what constitutes good care in view of the fears and worries of both Mrs and Mr Whitby. For dementia, in a way, can be termed ‘a disease for two’, affecting both the person with the diagnosis and her partner, threatening their health and their relationship. Obviously, at this stage, Mrs and Mr Whitby are unable to find common ground to share their thoughts and uncertainties. One way of moving forward  – and Mr Whitby could take the initiative here -  might be to seek the help of a professional caregiver who could set up a dialogue with the couple, in order to enable them to share their fears and to find a middle way between denial and full diagnostic disclosure.

Ethical commentary by Mr Federico Palermiti (Monaco)

Faced with the onset of his wife’s memory problems, Mr Whitby decided to bring up her health condition with the family doctor, in her absence. While being concerned about these initial symptoms seems entirely understandable, I feel that undertaking the diagnostic procedure without his wife calls for some comment:

Firstly, it is important to take Mr and Mrs Whitby’s friends into account in this case. We could question, for example, whether the fact that their neighbour, John, had dementia had a role to play in Mr Whitby’s decision. Seeing and understanding what it means to live with dementia may have spurred Mr Whitby on to know more and to act swiftly.

We might also question the place and role Mr Whitby seems to want to occupy during this period of doubt. Mr Whitby is rightly very worried by his wife’s early symptoms. He is eager to put an end to this doubt and to know the diagnosis. But faced with his wife’s reticence how can we interpret Mr Whitby’s actions? Is he simply trying to protect her? I am sure this is so. His good intentions cannot be doubted. However, should his desire to protect his wife involve excluding her from these initial decisions?

Regarding Mr Whitby’s desire to find out whether his wife had dementia, perhaps the doctor’s reaction was too rapid and too abrupt, bearing in mind Mr Whitby’s fears about the disease. Did the doctor really need to answer Mr Whitby’s question so quickly? The pre-announcement phase is a step which can take time to be accepted by those concerned.

Finally, Mr Whitby expresses that he felt he had the right to know and to be informed despite his wife’s (very probably short-lived) refusal. But does wanting to know mean one has therightto know?

As I see it, this situation teaches us that two factors coexist (often conflictually) in this process of understanding the first signs of the disease. The first concerns the relationship of trust between all those concerned by this announcement: the patient with his/her partner or children, as well as with healthcare professionals. Even within a couple, this trust can quickly become weakened and disrupted by the fear of this disease. Without wishing to hurt the other person, some misunderstanding can appear. It is then common to find a discrepancy between desired decisions and desirable decisions and this can have consequences on the patient’s future care.

The second fundamental element during this period of doubt is the question of time organisation. Faced with decisions which must be taken, (often urgently), several time periods can clash: the period of realisation that something is not right, the period needed to talk about it and to discuss, the period for accepting the consequences of a potential illness and the period in which to make decisions. These various time periods must be considered because they vary greatly depending on the person in question, their experiences, background and perceptions of the illness. Trust and time may conflict; but if they can be carefully negotiated, there is more chance that things will go well for all concerned.

 

 
 

Last Updated: Monday 08 February 2016

 

 
 

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