The Awkward Silence - Ethics of Withholding Information

Oliver Oâ€™Mara, 2013. The Awkward Silence - Ethics of Withholding Information. Reformulation, Summer, p.9,10,11,12,13.

I ï¬ rst came across Cognitive Analytic Therapy (CAT) when working as an assistant psychologist for a forensic learning disability service. My interest increased when, on my older adults’ placement, I was supervised by Dr Jill Rayner (Highly Specialist Clinical Psychologist and CAT Therapist). I have found its applications with older adults can be enlightening and thought provoking.

While completing my older adults’ placement I was asked to attend several formulation meetings in a variety of care homes. In each case I was struck by the complexity of the challenges faced by staff, especially the potential ethical dilemmas. This article is a story about a ï¬ ctional character called Phil. The ethical dilemma experienced by those who care for Phil is whether or not to withhold information. Phil’s story will hopefully highlight some of the dynamics, both helpful and unhelpful, that can occur when deciding the best way forward when faced with an ethical dilemma. This article aims to encourage people to think about the ethics involved in caring for older adults especially those that experience memory problems. The article does not aim to provide any answers to the dilemmas professionals may face but to rather facilitate a reï¬‚ ection. A CAT formulation of Phil is offered to highlight the dilemmas staff and clients may face.

Phil's Story

Phil is an eighty year old gentleman with dementia, currently living in a large private care home and enjoying gardening and listening to music. Phil has lived there for over a year, and during this time Phil occasionally decides he doesn’t want to eat or get out of bed; this can occur for days at a time. He has also described to staff feeling lonely. As stated earlier, Phil is a ï¬ ctional character; however his presentation, history and current situation reï¬‚ ects some common experiences of working with older adult clients.

Phil’s wife passed away a year ago; Phil was already suffering from dementia and was in the care home when his wife died. He had been with his wife for over 50 years. The family reported that they had had their ups and downs but in general it was a loving marriage. Phil’s family, who he is close to, decided that he should not be told about her death. They reasoned that it would cause ongoing distress as, because Phil had dementia, the information would need to be continually retold. I wonder how many readers agree with the withholding/ protecting position and would choose the same for their parent, grandparent, or partner

Phil’s family’s Dilemma

Phil’s family clearly care for him and want the best for him. They do not want him to suffer more than he has to. However, I wonder how much they have thought through their decision and how do they know that Phil would not be able retain the information? It seems to me that Phil’s family want to avoid causing him needless distress but I wonder whether trying to protect him in this way could cause him more distress in the longer term? The dilemma for staff in Phil’s case is whether Phil could retain the information about his wife or whether there would be undue distress caused when Phil’s memory doesn’t allow him to retain the information, so each time he is told he has to go through the whole process of shock and grief again. The ethical dilemma is between telling Phil the truth about his wife’s death even if he is unable to remember this information, thus undergoing the emotional process of bereavement possibly on several occasions, or to protect him from this by withholding the truth.

Care staff face similar difï¬ cult ethical decisions almost daily and withholding information in the healthcare profession is nothing new; take for example the placebo effect. Unfortunately, there are no statistics on how often and in what circumstances information is withheld from residents in care homes. What the limited research does show us is that there has been a shift in attitudes towards withholding information from hospital patients. In the 1960s it was found that 90% of doctors did not see the beneï¬ t of revealing a diagnosis of cancer to a patient (Oken, 1961). Forty years later and 98% of doctors surveyed reported a policy of telling the truth (Johnston, Bouman, & Pinner, 2000). The beneï¬ ts of withholding information however are not clear cut. How then do professionals and families decide when it is beneï¬ cial and when it is detrimental?

The complicating factors

If we take Phil’s story as an example, there are several complicating factors in deciding whether to withhold information. Firstly dementia affects everyone differently. Although there are core memory deï¬ cits, these deï¬ cits will impact each individual’s life differently. Secondly, dementia is degenerative. What works for an individual one day may not work for him in a month, week or even a day’s time. Thirdly, a topic that I will address in greater detail later in the article, staff pressures and dynamics can also inï¬‚ uence the decision making process. In Phil’s particular case we also need to consider what his relationship was like with his wife and how much he currently talks about her and enquires of her whereabouts. These complicating factors add to the complexity of making ethical decisions when there are conï¬‚ icts of values, for example, between families and care staff and possibly between different professionals involved in Phil’s care.

Quotes from the Nufï¬ eld Council report on ethics in elderly care (2009) highlight the above point of complexity and changeability:

“I don’t think it helps anyone to lie about anything.” Anonymous consultation respondent
“There comes a point when conversation is more important than cold truth and a conversation about a person is more constructive than living through bereavement day after day.” Older People and Disability Team, Social Care and Learning Department, Bracknell Forest Council, consultation respondent.

Decision Making Process

It may be useful to explore the decision making process in more depth, especially how different reciprocal roles and relationships can inï¬‚ uence this process.

Theory of Mind (ToM) (Baron-Cohen, 2005) – is the ability to understand the internal mental state of others in order to work out their thoughts, feelings and intentions; put another way it is the ability to put yourself in someone else’s shoes (Blair & Blair, 2009). ToM is arguably care staffs’ most important tool when working with clients who struggle to verbalise their thoughts and feelings. Care staff can attempt to imagine what their client is going through and then inform their practice around this. Care staff use their ToM skills to imagine the client’s distress and try to reduce it. The risk for staff however is that they misplace their ToM skills and make assumptions about Phil’s capacity. They assume that Phil will be unable to cope with the news or even to notice whether something is missing. These assumptions come from a willingness to protect Phil from distress. However, the overprotecting position of staff could mean that Phil is left feeling protected but also disconnected and vulnerable as he may start to question his own capability (RRP: Overprotecting/ assuming to protected/disconnected).This is especially pertinent in older age adults who can be seen by society as frail and vulnerable (Kitwood, 1997). To highlight the difï¬ culty of imaging what other people want Maguire et al., (1996) found that 83% of carers did not want their relative to know they had this diagnosis of dementia; but 71% of the same carers would want to know if they had this diagnosis themselves (Johnston et al., 2000). When older adults were asked whether they would like to know if they had a dementia diagnosis around 90% stated they would like to know (Erde et al., 1988; Holroyd et al., 1996).

We do not know how Phil will respond. We do not know whether Phil will even believe that his wife has passed away. What we do know is that a death of a loved one is very distressing and having to relive this trauma, possibly several times, even more so. On the other hand, how much does not knowing about your wife’s whereabouts cause an equal amount of distress? As Phil has been with his wife for over 50 years, would he not notice that she is no longer there?. Although dementia generally reduces cognitive ability and awareness, it is also very changeable. Phil may experience periods of lucidity and wonder where his spouse is. Phil may have experienced several signiï¬ cant life events where he would have had to cope and survive, and considering his age he would probably have also experienced several bereavements. Therefore is it right to assume that is Phil really not able to cope? This takes us back to the original dilemma; even if Phil is able to process the information that his wife has died, is it right to cause that amount of ongoing distress as the information may need to be continually retold?

The ‘Truth’ (RRP: Truthful/ Overwhelming – Overwhelmed/ Confused) – If staff did decide to tell Phil his wife has passed away, how would he make sense of this information? We do not know: he may believe it; he may reject it or only partially take in this information. It may be that the information is too overwhelming for Phil to understand especially with his dementia. He may therefore be left feeling confused and bewildered. Furthermore, as already pointed out, staff may struggle to make sense of Phil’s thinking and feeling. They may also not want to think about the distress Phil may be going through or could go through, to protect themselves from his distress.

Availability of Staff ( RRP:Ignoring/ Controlling to Disconnected/ Controlled) – I wonder who telling the truth is distressing for? Passing on bad news is emotive and can be distressing for both the recipient and deliverer. Therefore I wonder if professionals or carers sometimes choose not to pass on information because it would mean less distress for them. Telling Phil about his wife’s death would require staff to tolerate their own distress as well as offer support to Phil. Staff may also ï¬ nd the withholding position distressing. Not being able to tell a resident about a loved one must be emotionally draining. The risk is that staff may ignore their own emotional selves and also Phil’s feelings. They may try to control his behaviour through distraction as these may seem easier options, protecting themselves and Phil from distress. However, if staff never sit with or attend to Phil’s emotional self always distracting him, it could leave him feeling disconnected, controlled and even lonelier.

The above example is clearly an extreme form of the pressures that staff can feel. These pressures can be on top of potential organisational pressures on time, energy and adherence to policies which may mean that the staff are possibly unavailable, both literally and emotionally, to make these difï¬ cult decisions. Staff adhering to organisational pressures could feel controlled yet safe. Not wanting to rock the boat, they in turn control their residents, possibly thinking this will make them feel safe. A possible additional function of controlling patients is that it creates a protective barrier for staff from potential distressing events that staff feel unable to cope with.

Kitwood (1997) and Sutton (2003) have articulated the core of the above dilemmas: when we invalidate, negate or deny attention to subjectivity and emotionality, people begin to lose their sense of self and of life, which can lead to feelings of disintegration. The dilemma for staff as stated earlier is whether Phil could retain the information about his wife or whether there will be undue distress caused when Phil’s memory doesn’t allow him to retain the information about the death of his spouse, so each time he is told he goes through the whole process of shock and grief again. This is difï¬ cult in the case of Phil as both the truthful position and the withholding position can be equally invalidating. Withholding information about the death of Phil’s wife denies Phil his right to grieve and make sense of his changing future without her. Whereas, telling Phil about her death can equally confuse his world and bring into question his sense of self and future self as he may not believe or remember the truth. This can be mapped out in terms of Cognitive Analytic Therapy (CAT) reciprocal roles (see diagram 1) where withholding information from someone or telling the truth can bring into question their already fragmented world. The unhealthy CAT map uses Sutton’s (2003), Ryle’s (1997) and Ahmadi’s (2011) reciprocal roles of Kitwood’s (1997) malignant social psychology highlighting unhelpful roles that carers and professionals risk falling into through making assumptions about someone’s capacity and not paying attention to the emotional content of the person. The main theme from the map is that providing a rigid approach to the situation hinders an individual’s ability to make sense of their world.

Possible ways forward

Validated to Alive - Kitwood (1997) stated that when our subjectivity, emotionality and lives are validated then we have a sense of ourselves. If we relate this to Phil’s story are there aspects of his story that we can validate and help him make sense of? Rather than hiding away from his distress and keeping him in the dark (as in diagram 1) could we sit with his pain and help him to make sense of his world; helping him feel more connected, valued and integrated, this is also known as emotional validation. Staff could focus on the process rather than the outcome, validating the emotional content of the person therefore not getting caught up in the truth or lies. This would ï¬ t with Kitwood’s movement from ‘task orientated’ culture of care to a relationship orientated culture of care. A healthier map could therefore be seen in diagram 2.

Recognized to Valued - One way to address the above complications and changeability of the situation is to consider the person’s Zone of Proximal Development (ZPD)(Vygotsky, 1978). The ZPD is the distance between a person’s performance and the potential development level that can be achieved (Goldhaber, 2000). Dementia care staff are typically more familiar with clients’ lower boundaries of performance (Salari & Rich, 2001). Exploring the upper boundary of dementia is a challenge, but through exploration it can make the individual feel challenged and valued. Staff may be able to recognize Phil’s difï¬ culties but could also consider his strengths. They could think about how Phil could employ these strengths. A secondary function is that exploration leads to the possibility of co-creation of meaning, which in CAT is more commonly known as ‘joint activity’ (Ryle & Kerr, 2002). Staff and Phil may be able to talk about his partner, exploring his feelings towards her, so that they create a shared understanding of his current situation.

In conclusion, this debate will possibly raise several difï¬ cult and conï¬‚ icting views in people and the aim of the article is just that. Hopefully it has made people think. It certainly made me think, especially around what we mean by ‘truth’. What is truth? Is it the emotional content or the facts, and how helpful is it even to think in terms of truths and lies. What appears to be important is that people are afforded the time and space to think about ethical decisions. Unfortunately with busy wards and care homes this is not always the case. The challengefor managers is then how to create this space. It would be wrong to offer an answer or blue print of how to act when faced with an ethical dilemma. However, it is vitally important for staff to validate, connect with and recognise the individual needs, thoughts and feelings of the people they are there for. I have attempted to highlight the complexities of a particular but commonly encountered ethical dilemma. For those interested in related issues including trust and professional identity, The Nufï¬ eld Council on Bioethics: Dementia – Ethical Issues (2009), is an excellent resource.

Oliver O’Mara is a clinical psychology trainee. He can be contacted at Oliver.o’mara@nhs.net

Full Reference

Oliver Oâ€™Mara, 2013. The Awkward Silence - Ethics of Withholding Information. Reformulation, Summer, p.9,10,11,12,13.

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