19 Mar, 17 | by dibarrett
Jan Hunter, Lecturer in Nursing, University of Hull
In the rather paternalistic past of the NHS, the established wisdom was that ‘doctor knew best’. If it was deemed a patient didn’t need to know they had a poor prognosis, then they didn’t find out (unless they had the wherewithal to put two and two together, or the audacity to ask outright). Thankfully, we are moving away from the days of selectively withholding information, with candour and truth-telling now at the centre of patient care. Nurses – with their ability to forge strong bonds of trust with patients – are well-placed to act as leaders in the discussion of disease progression and prognosis. Though this cements the place of nurses as autonomous practitioners, it also requires us to face one of the key challenges in cancer care: how do we balance truth-telling with the desire to reduce distress and give hope to patients and carers?
In some patients, there may be a temptation to try and ‘soften the blow’ of bad news. For example, a measured disclosure of bad news over time may be deemed the most appropriate approach in patients we judge to be vulnerable or those we perceive to have a lower ability to cope. Superficially, holding back some information might be viewed as nothing more than a ‘white lie’ to protect patients and help prepare them for bad news. However, no matter how well intentioned, making judgements on when to offer full disclosure may serve to undermine the bond of trust between a patient and nurse.
There are those who question whether it is always beneficial to tell the truth. Kazdaglis et al (2010) believe the perception of positivity around truth-telling is merely an assumption; this is echoed by Sarafaris et al (2014) who argue that despite the need for patient autonomy, healthcare professionals shouldn’t disclose the truth if patients cannot cope with it. Though these may be valid views, rooted in the ethical principles of beneficence and non-maleficence, how do they align with professional expectations (such as those outlined in the Nursing and Midwifery Council Code (2015) in the UK) that advocate open and candid communication with patients about all aspects of care?
From a patient perspective, how would it feel to be deceived in such a way? In some cases, the truth will cause distress, but this would be outweighed by the anxiety associated with uncertainty. Patients need to know the truth to make choices about their future care, to adjust, and to prepare. When the truth is delivered with compassion, and time is taken to support the patient, even the most difficult truth can be better than a well-meaning lie.
So, what is the best approach? Nurses should certainly ask patients about their preferences from the start of their oncology pathway. However, this presents risks: how do we approach a patient who has expressed a preference to be ‘kept in the dark’? How do we avoid colluding with patients who seek to keep truth from their relatives? How do we prepare patients and their loved ones for the challenges of an advanced symptom burden without speaking with them candidly and honestly? How do we help patients face the truth if we agree to hide it from them? As nurses, we cannot be servants to patients’ demands if these could impact upon their care and safety, or breach our own professional standards (Taboada, 2017).
Finally, where does hope fit into this discussion of honesty? How do we nurture hope at the same time as telling someone that their life is coming to an end? Though we must recognise the importance of hope, nurses must also understand the damage caused by offering false hope. However, truth-telling and hope are not mutually exclusive: hope in cancer patients is not merely for survival. Though hope may be for a cure, it may also be for dying without pain; for dying with loved ones present; for dying at home; for getting the best care from those around you.
It’s easy to preach the importance of truth-telling and the positivity of hope. But there must be consideration of how much to say, what to say, and when to say it. As much as honesty and openness is a core principle of nursing, we cannot treat all patients the same – the approach taken to sharing information must be individualised, patient-centred and rooted in a philosophy of candour. Patients may have personal goals they want to achieve before they die, and by being honest with them, and supporting them through their most difficult of journeys, we can ensure that some hope is present until the very end.
Kazdaglis,G.A, Arnaoutoglou,C., Karypidis,D., Memekidou, G.,Spanos, G.and Papadopoulos, O. (2010). Disclosing the truth to terminal cancer patients: a discussion of ethical and cultural issues Eastern Mediterranean Health Journal .16 (4).
Nursing and Midwifery Council (NMC) (2015). The code: professional standards of practice and behaviour for nurses and midwives. London: NMC.
Sarafis, P., Tsounis, A., Malliarou, M., and Lahana, E. (2014). Disclosing the Truth: A Dilemma between Instilling Hope and Respecting Patient Autonomy in Everyday Clinical Practice. Global Journal of Health Science. 6 (2), 128–137.
Taboada, P. (2017). Requests to Withhold the Truth at the End of Life. Available: https://hospicecare.com/resources/ethical-issues/essays-and-articles-on-ethics-in-palliative-care/requests-to-withhold-the-truth-at-the-end-of-life/. Last accessed 14/03/2017