In reports into end of life care (EOLC) in the UK, patients and families have highlighted a range of concerns including symptom control, communication, care planning, prognostication and access to services (Neuberger et al, 2013; PHSO, 2015). It is therefore no surprise that the National Palliative and End of Life Care Partnership (NPEOLCP, 2015) demand that EOLC improvement is placed at the top of the agenda. The following discussion will focus on one of the key challenges of EOLC highlighted by patients and professionals, the provision of artificial hydration (AH) (Neuberger et al, 2013).
Access to drinking water is defined as a fundamental human right (United Nations (UN), 2010). Yet clinical consensus recognises that as a patient enters the dying phase, their ability to hydrate themselves often decreases (NICE, 2017b; Dougherty and Lister, 2015; Ellershaw and Wilkinson, 2011). Indeed, decreased oral intake is defined as one of four key factors in diagnosing dying patients (NICE, 2017b). In this instance, national clinical governance dictates that clinicians must consider the use of AH (NICE, 2015; NICE, 2017a; NICE, 2017b). Yet systematic reviews of the literature demonstrate that practice in this area is inconsistent, particularly in acute hospital settings (Raijmakers et al, 2011; Gent et al, 2015). As a result, AH has proven to be one of the most controversial elements of EOLC for patients and families (Neuberger et al, 2013).
Given these findings, the challenge that faces clinicians is how best to diagnose dying. Clinical guidance reflects nursing theory (Dougherty and Lister, 2015; Ellershaw and Wilkinson, 2011) and clinical governance (NICE, 2015; NICE, 2017b) in recommending a person might be considered to be dying when at least two of four key symptoms are present without any discernible reversible causes, and following a period of decline. These four factors include the patient being bed-bound, semi-comatose or comatose, unable to take oral medication, and only taking sips of fluid (Clinical Guidance, 2016). However, given the apparent importance patients place in discussing their preferences regarding AH (Bukki et al, 2014; Malia and Bennett, 2011), it is problematic that clinicians may only be recognising that these discussions are appropriate once a patient has already become semi-comatose and unable to engage.
Once a person is recognised to be entering the dying phase, consensus dictates that the benefits and costs of AH must be considered and discussed with the patient and family (NICE, 2015; NICE, 2017a; NICE, 2017b). This necessitates that healthcare professionals have a clear understanding of these benefits and burdens themselves. Yet reports into EOLC in the UK have highlighted inconsistency in clinicians’ knowledge regarding the role of AH (Neuberger et al, 2013). Likewise, systematic reviews of the literature consistently reflect limitations and differences in the knowledge bases of healthcare professionals (Gent et al, 2015; Raijmakers, 2011; Del Rio et al, 2012).
While clinical governance (NICE, 2015) demands that AH is considered at EOL, there is little evidence demonstrating the clinical benefit of AH in dying patients. In a randomised control trial (RCT) conducted in the US by Bruera et al (2013), no statistically significant clinical improvement was found in either patients who received hydration in the last week of life (n=63) or a control group (n=66). However, in order to maintain ethical standards, researchers did not include patients for whom hydration was clinically indicated or contraindicated. It is possible that patients with severe dehydration might have demonstrated greater benefit.
Nevertheless, in a retrospective examination of the impact of AH in dying patients, Krishna et al (2010) similarly found no difference in hydration-related symptoms between patients who did (n=141) or did not (n=147) receive AH. While the limitations of retrospective studies have been established (Rees, 2012), these findings reflect systematic reviews of the literature regarding the risks and benefits of AH in EOLC, which are consistently inconclusive (Good et al, 2014; Raijmakers et al, 2011). Indeed, it is important to note that the evidence base regarding the risks associated with AH in EOLC is similarly limited (Good et al, 2014; Raijmakers et al, 2011). That is, there is insufficient evidence to categorically assert that AH is either clinically beneficial or detrimental. Said uncertainty makes it reasonable to question why discussion of AH is deemed so crucial to EOLC at all.
Theory holds that AH in fact has emotional and spiritual significance irrespective of clinical benefit (Dougherty and Lister, 2015; Ellershaw and Wilkinson, 2011; RCN, 2015). Indeed, evidence does demonstrate that both the use of AH in EOLC and its withdrawal have symbolic value to patients and their families (Gent et al, 2015). While Bruera et al (2013) found no clinical benefits of AH, a phenomenological analysis of the meaning of AH to participants in their study found that patients (n=85) and caregivers (n=84) nevertheless perceived physical and psychological benefits of AH (Cohen et al, 2012). Moreover, AH was demonstrated to represent hope for patients and families, who deemed hydration as essential for life, and thus withdrawal of AH as potentially hastening the dying process (Cohen et al, 2012).
Moreover the large sample, drawn from a westernised demographic, makes these findings transferable to a UK setting (Rees, 2012). Of course, the purposive sampling of patients previously recruited to an AH trial makes it possible that findings were biased in favour of AH (Polit and Beck, 2014). Interviews with patients who declined AH in EOLC might have offered a different perspective.
Yet research repeatedly demonstrates the perceived emotional and spiritual benefits of AH to patients and caregivers (Bukki et al, 2014; Higgins et al, 2013; Malia and Bennett, 2011). Research thus supports the consensus among EOLC theory, national (NPEOLCP, 2015; LACDP, 2014) and clinical (NICE, 2015) governance that EOLC should be a personalised process, with emotional and spiritual needs considered alongside clinical practice. Given this apparent emotional and spiritual benefit, and the lack of evidence to demonstrate its detrimental effects, it seems reasonable to recommend the use of AH on a case-by-case basis as long as patients are monitored closely for changes in condition. Indeed nursing theory (Dougherty and Lister, 2015; Kinghorn and Gaines, 2007) and clinical governance (NICE, 2015) recommend regular assessment of dying patients to monitor the impact of AH.
Nevertheless, clinical situations may demand that, at some stage, AH is not deemed appropriate. Professional duty demands that nurses are aware of the ethical implications of their clinical decisions (NMC, 2015; International Council of Nurses (ICN), 2012; Beauchamp and Childress, 2009). In these instances, clinical governance defines AH as a treatment and as such dictates that it may be stopped when it ceases to be beneficial (General Medical Council (GMC), 2010; British Medical Association (BMA), 2007). This reflects the ethical doctrine of double effect that commonly underpins clinical decision-making (Thorns and Garrard, 2011; Chippendale, 2007). Yet, while ethically permissible, evidence demonstrates that decisions to withdraw AH can be immensely traumatic, generating feelings of loss in patients and families who perceive AH as representing hope, as discussed above (Cohen et al, 2012; Bukki et al, 2014; Higgins et al, 2013; Malia and Bennett, 2011). In this respect reality reflects bereavement theory, which understands grieving as a staged process (Kübler-Ross,1969) that can be ongoing for patients and families, long before death, even from the point of diagnosis.
In the long-term, the limited evidence-base exposed by this discussion must be addressed through further UK-based research. Nevertheless, while acknowledging the limitations of the current evidence base, the literature discussed has underlined the importance of early identification of dying patients in order to facilitate effective communication and support decision-making regarding AH. One way that this approach might be facilitated is through advanced care planning (ACP). In an observational survey study conducted with 4399 subjects in the United States, Bischoff et al (2013) found that use of ACP improved EOLC by reducing unnecessary clinical interventions, increasing implementation of palliative care, and ensuring treatment meets patients’ preferences. The scale of this study makes the data very persuasive (Polit and Beck, 2014). Moreover, systematic reviews of the evidence further confirm these findings (Brinkman-Stoppelenburg et al, 2014; Lorenz et al, 2008). UK clinical governance is therefore rational in recommending an ACP approach that identifies patient preferences at the earliest possible stage (NICE, 2017b; NICE, 2015).
This discussion has highlighted the emotional, spiritual and clinical significance of AH to patients and families. Yet critical analysis has likewise exposed how limited evidence and associated inconsistency in clinical knowledge can lead to unsatisfactory care at this pivotal time in people’s lives. It is only by recognising these deficiencies in the knowledge on which EOLC must be based, and seeking to address them, that the management of AH at the end of life can be improved, improving the experiences of patients and families in the process.
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