I recently participated in a TweetChat that focused on the care for a disorientated and distressed woman with dementia (if you have never joined in a TweetChat before I highly recommend it, see here, though you may require a cold compress across your eyes and your fingertips submerged in icy water after an hour of rapid-fire tweeting). There was a lot of food for thought, but I wanted to blog about a brief exchange debating whether it constitutes dishonesty for the nurse to “join in” the patient’s (futile) search for her son.
The issue of truth-telling is interesting, particular in the context of caring for people with dementia. Nurses are taught from their first day as students of the importance of truth-telling. Current health policy places patient-centredness centre stage and reminds us that patient autonomy and choice are key. These ideals are what apparently sustains collaborative care and renders patients active participants in their care. However, much research about truth-telling looks at truths in relation to medical diagnoses rather than how to talk about other aspects of a person’s life.
Where truths are avoided in order to protect the patient from harm, as in the cases observed by Lesley Fallowfield, it is clear that misguided paternalism can cause immeasurable harm. In not divulging information about a patients’ condition, one is potentially denying that patient the right to make informed decisions about their care, and from preparing themselves and their loved ones from difficult times ahead. The risk of collusion is also a very real ethical dilemma that can result from selective truth-telling.
An alternative perspective is that unconsidered truth-telling, particularly in palliative care, can compromise hope and that there can be situations in which there is a moral justification for withholding truth. Of course, truths can be withheld not just in the perceived interests of the patient, but out of self-protection on the part of the health professional. If withholding a truth (or telling a falsehood) means a lower likelihood of difficult conversations, then it is clearly not the patient’s interests that are central to the decision.
The issue of truth-telling in dementia care is a little more complex. Partly because of this, and perhaps partly because I have been thinking a lot about all those young men who lost their lives in the first world war, I was recalling recently a resident I met in a nursing home where I was placed as a second year student nurse.
The placement stuck in my memory particularly because of “Agnes”, an 83-year old resident with severe Alzheimer’s disease. She had been living in the nursing home for the previous 3 years, ever since her daughter had suffered a stroke and become unable to care for her. A widow since wartime, she was prone to ruminate about her husband, searching for him continuously. She would often be found in the kitchens, ambling through the patch of woodland in the grounds, or in other residents’ rooms. Each time, her explanation was the same: “I’m looking for Monty”.
Her daughter had described this had been happening at home, prior to Agnes being admitted to the home. Initially the nurses felt that it was important to be truthful with Agnes. The matron sat her down and gently, slowly, patiently explained that Monty had died in the war, several years previously. The pain and grief in Agnes’ eyes was something I would never forget. It was as though she were experiencing her loss afresh. She wept, screamed, clasped her hands to her mouth, rocked back and forth on the chair while clutching her hands to her belly, the tears seemed interminable. A nurse took her by the hand and they walked through the lounge and out into the grounds.
Her weeping subsided as she was momentarily distracted by a cat slinking through the patio doors and out into the trees. A few minutes later, she turned to the nurse and said “I’m just off to find Monty, do you know where he is?”
She had no recollection of their conversation. Or perhaps she had suppressed it, unable to bear the pain which it elicited. Or perhaps she knew that Monty had died (on an unconscious level) but this manifested as a refusal to believe it. Those in favour of the “process” models of grief such as Elizabeth Kubler-Ross and Colin Murray-Parkes might identify that Agnes was trapped in denial, unable to move through her grief until she had accepted the reality of Monty’s untimely death. My own view is that grief is in our very bones. It doesn’t matter how aware you are of the facts, nor is it helpful to locate a person on some imaginary conveyor belt of grief from which they will one day emerge, intact. Grief settles into your being. To lose one’s love in war must be among the most unbearable things. I am not surprised Agnes had a hard time accepting it, decades later.
So was the nurse in this case “right” to tell the truth to Agnes? Is it “right” to tell patients about all aspects of their care always, or does this need to be balanced anew with each situation, based on a careful weighing up of risks and benefits. Our culture places high value on truth and autonomy. The default position is one in which the good reputation and trustworthiness of healthcare professionals is based on an assumption that they are honest at all times.
For someone who is able to decide for themselves whether they want the truth, warts and all, this is less of a problem. A consultant that I worked with in palliative care would regularly ask her patients whether they were the kind of person who liked to know everything about decisions that are being made, or not. This enables an understanding of what the individual person and their family wanted in terms of honesty. It certainly made subsequent conversations clearer and less fraught, as the information provided could align with their expressed preference for balancing hope and realism.
However, for someone with severe memory problems such as occur in dementia this is not an option, and so the default position is often that of truth-telling. But this does not necessarily avoid the risk of harm, as seen in the example of Agnes, and in similar case studies. One of the ethical frameworks frequently used in practice is that by Beachamp and Childress which encourages consideration not only of autonomy, as already discussed, but of non-maleficence – first do no harm.
Interestingly, the Hippocratic Oath contains nothing in relation to whether the truth should always be told. Our current emphasis on patient involvement and autonomy is as much a product of living in a society founded on individualism as it is a universal aspect of practice. Indeed, we only need to look at other epochs in the history of medicine to see that truth-telling is a fairly recent development. It hasn’t always been a core part of medical practice.
But there is a potential slippery slope. If we acknowledge that it can sometimes be acceptable to withhold the truth from people with dementia, it could lead to unacceptable practice, such as residents being told “white lies” to stop them from interrupting staff. The ideal is of course be that any decision about withholding truth in relation to such significant events is made carefully and with the person’s interests at heart, with the explicit aim of minimising both short and long term harm.
Interesting in Agnes case, Monty’s death was several decades before she developed the signs of dementia. The fact that she had regressed to a state in which she considered that Monty was alive made me wonder whether even before her dementia she had struggled to accept the reality of his death.
According to Worden, the first “task” of mourning is to accept the reality of a death. Without this key task, he suggests that it is difficult to integrate change in ones grieving. If Agnes had been unable to believe that Monty had died before she developed the signs of dementia, it is hard to imagine that she could be any more likely to accept the reality of his death now.
After the matron’s initial conversation with Agnes, described above, no member of staff mentioned his death again. When she was found to be looking for Monty, with her forehead furrowed and faltering steps, the nurses would take her hand and say, gently “I’ll come with you to look for him”. This wasn’t a lie. The futility of the search was not relevant. The important thing was that Agnes felt recognised and acknowledged in her bemusement. There was a supporting hand on hers as she shuffled down the corridors. And when she smelt the toast in the lounge and the nurse suggested they go and have a cuppa, her smile was genuine and for a moment she had lost her tormented lost look, and was back in the present moment.
Caring for people with dementia who are grieving requires continuous attention to the fine balance of harms and benefits. I would argue that deciding not to bring up the subject of Monty’s death was permissible given not only the harm that resulted from telling her the truth, but also the fact that she would invariably forget the fact after a while, and begin again her task of searching everywhere for him. I am not advocating a collusion of pretence in relation to her loss, or that she is told and outright lie such as that he has not died. Rather, I advocate noticing and paying attention to her emotion and behaviours in the moment, rather than trying to contextualise or explain the reasons for them.
The rules let us down; there is no one-size-fits-all “right” thing to do, and each person we encounter brings a new ethical and moral challenge. One of the core questions we ask when recruiting new student nurses is “would I be happy for this student to care for me/my loved ones?” The same kinds of rules can be applied to truth-telling – “what would I want?” “Am I making this decision to make life easier for myself, or is it born from a genuine compassion towards this person?” Attending to the emotions that accompany the searching might be the most authentic way to relate to somebody in this state. No lie is needed if the response is to the emotions rather than the facts:-
“I’m looking for Monty. Have you seen him?”
“I’m not sure. You look a little troubled, shall I come and walk with you?”
The Alzheimer’s Society have produced some guidance on how to help people with dementia who are grieving. They emphasise the importance of consistency to minimise the risk of confusion where the person hears different stories from different people. Close observation is required, perhaps paying attention to what sorts of triggers lead her to begin searching for Monty. Perhaps it happens when she is tired, or when a certain resident who may have a similar accent is speaking. If this is the case, it might be that carers are able to anticipate the trigger and even if unable to remove the trigger, be able to be particularly present at these times and to offer opportunities for distraction or routines that are familiar and safe.
If I imagine myself with dementia my immediate thoughts are that I would want to be told the truth. I would not want to be patronised, I would not want decisions to be made on my behalf, and I would like to be allowed to respond in my way to whatever challenges the “truth” will present. And yet, if the information I was given was traumatic and distressing, and I was likely to forget it again, I might choose ignorance over knowledge.
Last year, my grandmother mistook me for another relative, who died several years ago. When I reminded her of who I was, she said “oh yes, silly me”. She then told me all about the other relative, her memories of family meals and events were crystal clear. She did not mention the illness or her untimely and difficult death; her memory had somehow blanked out this traumatic part of the story. All that she was left with were the pleasant images. She mused out loud that she wondered where Claire was, and what she was up to these days.
And we left it at that, as she fell asleep.