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What influences attitudes towards clinically assisted hydration in the care of dying patients? A review of the literature
  1. Miriam J Gent,
  2. Sarah Fradsham,
  3. Graham M Whyte and
  4. Catriona R Mayland
  1. Aintree Specialist Palliative Care Service, Aintree University Hospital NHS Foundation Trust, Liverpool, UK
  1. Correspondence to Dr Catriona Mayland, Aintree Specialist Palliative Care Service, Aintree University Hospital NHS Foundation Trust, Wards 53/54, Longmoor Lane, Liverpool L9 7AL, UK; catriona.mayland{at}aintree.nhs.uk

Abstract

Background An equivocal evidence base on the use of Clinically Assisted Hydration (CAH) in the last days of life presents a challenge for clinicians. In an attempt to provide clarity, the General Medical Council (GMC) has produced reasoned guidelines which identify that clinical vigilance is paramount, but that healthcare professionals should consider patient and family beliefs, values and wishes when making a decision to commence, withhold or withdraw CAH.

Aims To describe the attitudes and knowledge of patients, families, healthcare professionals and the general public regarding CAH in the care of dying patients.

Methods Four electronic databases were searched for empirical studies relating to attitudes and knowledge regarding CAH in the care of dying patients or end-of-life care (1985 and 2010). Selected studies were independently reviewed and data collaboratively synthesised into core themes.

Results From 202 identified articles, 18 papers met inclusion criteria. Three core themes emerged: (1) the symbolic value of hydration; (2) beliefs and misconceptions and (3) cultural, ethical and legal ideas about hydration.

Conclusions Developing international evidence suggests that cultural norms and ethical principles of a family, population or healthcare environment influence attitudes towards CAH, particularly where CAH has symbolic meaning; representing care, hope and trust. However, there is surprisingly little robust evidence regarding dying patients, or the wider general public's views, on the perceived value of CAH in the last days and hours of life. Accordingly, a need for greater understanding of the perceptions regarding CAH, and their effects, is required.

  • Terminal Care
  • Fluid Therapy
  • Clinically Assisted Hydration
  • Attitudes
  • Clinical Decisions
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Background

The administration, withdrawal or withholding of Clinically Assisted Hydration (CAH)i to patients in the last days or hours of life is a complex and emotional issue for healthcare professionals, patients and their families. The challenges in decision making are compounded by the limited and largely equivocal evidence base on the benefits and burdens of CAH.

A Cochrane review of CAH in palliative care,1 undertaken in 2008 and updated in 2011, included five papers which varied in their methodological quality. There is limited evidence that CAH may improve sedation, myoclonus and decrease ‘dehydration’,2ii but no evidence to suggest that it can improve symptoms such as thirst, delirium or fatigue. By way of contrast, there is limited evidence that CAH may exacerbate fluid retention symptoms (such as pleural effusion, peripheral oedema and ascites). The review identified that there are insufficient good quality studies to make any clinical recommendations with regard to the use of CAH in the care of dying patients. It was concluded that clinical decisions regarding CAH in the care of dying patients would necessarily be directed by the perceived benefits and harms of CAH in individual patient circumstances.

This equivocal position regarding CAH is unsurprising due to the variable study methodologies reported within the literature, and the absence of robust definitions of clinically relevant outcomes; such as an accepted definition of dehydration and its value as an outcome measure in the last days and hours of life. Accordingly, the UK General Medical Council (GMC) has produced guidance on CAH,3 highlighting the need for individual evaluation of the patients’ best interest, rather than a blanket policy approach to care.

The GMC guidance focuses on patients ‘approaching the end of life’, defined as those likely to die within the next 12 months, and those patients for whom death is thought to be imminent and expected within a few hours or days. In decision making, clinicians are advised to give weight to the beliefs, values and wishes, including cultural and religious views, of patients and those close to them. The decision to withhold or withdraw fluids has been raised as a concern by patients and relatives who may not consider CAH to be a medical intervention but an act of basic care for those less able to take fluid orally.3 ,4 Although CAH is regarded in law as a medical treatment,5 it remains a point of ethical contention when making a decision to initiate, withhold or withdraw fluids.

Aim

Our aim was to identify and review the established evidence on the knowledge, beliefs, views and attitudes of patients, relatives, healthcare professionals and the general population towards CAH in the care of dying patients. While the focus of our review was on the last days and hours of life, it was recognised that many of the attitudes, influences and ethical decision-making dilemmas may equally apply to those patients with a longer prognosis.

Methods

Searches were performed using MEDLINE, Web of Knowledge, CINAHL and the Cochrane Library from 1985 to 2011. The search was conducted using MeSH headings and consensually selected search terms including: palliative; terminal care; end of life; knowledge; attitudes; hydration; fluids; and fluid therapy (see figure 1 for keyword combinations). The following inclusion criteria were adopted:

  • articles regarding CAH

    • referring to attitudes or views or knowledge or beliefs

    • referring to the end of life

  • all articles (including experimental studies, quasi-experimental studies and observational studies) published in peer review journals

  • articles published in English.

Figure 1

Electronic search strategies.

Reference or citation tracking was not carried out in this review. Studies that did not meet the inclusion criteria were rejected at three selection stages: title, abstract and full text. Each paper was independently assessed by MJG and SF for inclusion, and in cases of disagreement, consensus was reached by discussion. Details of study identification and the process of selection are shown in the PRISMA structured flowchart (figure 2).

Figure 2

Results of search strategy and selection process.

The diverse range of papers included in this review used a variety of research methods and are of variable methodological quality (table 1). Accordingly, statistical synthesis of study findings was not appropriate. Hence, the review was conducted by gathering reported information on attitudes, views, beliefs and knowledge regarding CAH in the care of dying patients, and results were then synthesised by their organisation, according to common themes: all 14 papers included were independently reviewed by MJG and SF, and themes agreed by discussion and consensus of the authors.

Table 1

Overview of studies meeting the inclusion criteria—attitudes, views and knowledge about CAH

Results

From the 202 citations initially identified, 18 articles met the inclusion criteria (table 1). Of those 18 papers, CAH in the care of dying patients was the main focus of ten articles.9 ,11–16 ,18–19 ,23 Five articles considered CAH in wider discussions concerning artificial nutrition and hydration (ANH)iii in the care of dying patients.6–8 ,10 ,22 Additionally, three papers were more broadly concerned with the care of dying patients, within which CAH was a minor theme.17 ,20 ,21 A total of 15 studies were quantitatively questionnaire based.6–9 ,11–18 ,20–21 ,23 Three papers were focused on qualitative analysis of interviews.10 ,19 ,22

The three main themes that were inherent within the literature were:

  • the symbolic value of hydration

  • beliefs and misconceptions

  • cultural, ethical and legal ideas about hydration.

The symbolic value of hydration

Within a qualitative study by Van der Riet et al,22 an interviewed doctor specifically describes his belief that a healthcare professional should consider ANH and its ‘symbolism for the family’ aside from medical issues alone. Of the papers included in the review, two explicitly described CAH as a ‘symbol’ of care.19 ,21 The use of CAH was thought to generate trust and hope. Nurses proposed that the provision of CAH helps in developing trust from patients and families, and reduces a patient's feeling of ‘abandonment’.7 Furthermore, professionals were concerned that withholding CAH took away the patient's and family's trust.13 ,15 Two papers described CAH as a symbol of hope for the patient and family, as to withhold fluids may be perceived as an act of ‘giving up’ or of acknowledging that the ‘path to cure’ is gone.19 ,21

In a qualitative study, Parkash and Burge,19 report that the family's enjoyment of caregiving duties would be perceived as being denied if a decision were made not to hydrate. By contrast, McClement10 found those families who ‘let nature take its course’ had an increasingly hands-on caregiving role once a decision had been taken not to artificially rehydrate. Families then became increasingly focused on providing mouth care themselves.

Beliefs and misconceptions

In a 1989 study of 448 doctors in Wales,9 85% would provide intravenous fluids in the last days and hours of life to ‘ensure patient comfort’. This is a view echoed in a 2007 study by Miyashita et al,13 where oncologists were particularly likely to believe that CAH alleviates thirst and fatigue. More recently, professionals conversely report that fluids rarely improve symptoms of dehydration (thirst, conscious levels) but often exacerbate fluid retention (oedema, pleural effusion, ascites, bronchial secretion, dyspnoea).7 ,13 ,16 However, acute care doctors are overall inclined to view CAH as more effective and less harmful compared with palliative care professionals.13

The consensus was that patients, families and the general population have a generally positive attitude towards the provision of CAH in the last days of life.11 ,14 ,17However, studies demonstrated that a positive attitude could, in part, be attributable to misinformation. In two papers, patients and families were reported to believe that CAH also provided nutrition.11 ,14 In three papers, families were of the conviction that CAH prolongs life in all cases and at all stages of disease, and that its denial would lead to premature death.14 ,16 However, in a study by Morita et al14 more than half the patients and families in a Japanese hospice inpatient unit were aware that CAH might cause deterioration in the patient's symptoms. Parkash and Burge19 illustrate a range of UK family responses to CAH: some believed CAH to relieve suffering and preserve life; others were of the opinion that CAH is a procedure associated with a burden of prolonged suffering.

Several authors believed a patient and family's ability to balance the benefits and burdens of CAH to be significantly influenced by the manner in which professionals educate or give information.11 ,12 In a general population sample in Japan which analysed questionnaire responses according to whether or not the individual had experience of palliative care as a family, experience of care provision in the last days of life had no significant influence on attitudes towards CAH.17 Nurses in Japan believe that doctors’ discussions of terminal hydration issues are insufficient.12

Cultural, ethical and legal ideas about hydration

Attitudes towards CAH may be informed by a pervasive cultural narrative. In Israel, attitudes are generally positive and thought to accord with Jewish culture which prioritises the principle of sanctity of life, where every effort should be made to prolong life.18 In East Asia, the phrase ‘minimum standard of care’ was deemed to be culturally significant and a subject of questionnaires to which physicians and the general population responded favourably.13 ,15 In UK law, CAH is regarded as a medical treatment.5

Internationally, professionals respected a patient's right to refuse CAH, even in those circumstances where the patient's autonomous decision was in conflict with the professional's personal religious beliefs.13 ,20 Families may also rationalise their support for withholding CAH according to their knowledge of what their relative would chose were they competent to decide.19

Discussion

This review supports an observation frequently made in clinical practice: patients and their families have strongly held beliefs about CAH, and these beliefs inform their interaction with healthcare professionals. Misconceptions regarding the clinical evidence base on CAH in the last days of life contributed to the justifications of many families and professionals who sought CAH and may relate to the symbolic significance described. If CAH is perceived to be a more effective medical treatment than the evidence base suggests, clinical decisions to withhold or withdraw CAH may be perceived as negligent by families and, therefore, impact significantly on the relationship between healthcare professionals, the patient and family. The review also found that clinical beliefs regarding CAH are not solely determined by the empirical evidence base but informed by medical subcultures which divide the beliefs of different clinical groups, especially acute medicine and specialist palliative care. However, the evidence suggests that most clinicians advocate patient choice regardless of their personal or religious beliefs.

It is the intention that this review be read as an explorative exposition of the evidence base to date. Identification of papers involved searching four major online databases, but it is possible that additional papers may have been identified had reference or citation tracking been undertaken. However, identified papers clearly demonstrate a range of methodological approaches to the study of CAH-associated beliefs, which would render systematic review problematic. Many of the studies used non-validated questionnaires, so although they provide interesting results, this potentially limits the validity and reliability of the findings. Additionally, the heterogeneity of the populations within this study limits the degree to which firm conclusions can be drawn about the proportional representativeness of the described beliefs. Of the 18 papers reviewed, there were only 14 distinct datasets, as researchers used the same populations for more than one study. This may have introduced selection bias and subsequently influenced interpretation of the results. A further limitation is due to the fact that certain populations were under-represented or conspicuously absent from the evidence base, for example, only three studies reported on patients’ beliefs, and the only general population samples were in Japan.

A recent review by Raijmakers et al24 has shown that CAH is a frequent part of medical care in the last week of life in cancer patients with frequencies up to 88% in the populations reviewed, despite there being little evidence of a benefit on patients’ symptoms or length of life. If CAH in the last week of life is such a frequent practice given the limited evidence base, it suggests that many patients and relatives are requesting it, which may be due to the reasons described in this review.

Although papers which dealt exclusively with ANH were excluded in this review, we can postulate that ideas about food and fluids may share culturally significant associations. In a study of 197 palliative cancer patients by Chiu et al,25 over 60% believed that ANH is a symbol of family care. Patients also believed that ANH could increase physical strength and prevent starvation at all stages of disease, demonstrating similar misconceptions to those associated with CAH. Further studies considered ANH in specific chronic disease populations, and in particular highlighted the ethical and legal judgements made during decision-making processes. In an Australian study, Van der Reit et al26 describes ANH decision making for patients with severe brain injury, balancing quality of life versus prolongation of life. In a Dutch study27 of dementia patients cared for within nursing homes, the overall consensus of staff and families was that refusal to eat or drink in the advanced stages of the illness should be respected.

Previous papers have described the difficulties in correlating clinical and biochemical markers of dehydration.28 Burge et al29 described that the prevalence of dry mouth and thirst are high in palliative care inpatients, however, there was no association between biochemical markers or fluid intake and thirst. This was supported by Morita et al30 who also identified that mouth breathing and opioids cause ‘severe thirst’ which is likely to be due to the effect they have on the dryness of the patient's mouth rather than causing significant dehydration. In turn, it is unclear from the evidence in this review the extent to which families understand that good mouth care can help to provide comfort for a dry mouth and assume that CAH is solely effective for this symptom. The involvement of families in mouth care may also help to provide a symbolic role in regards to the process of caregiving which has been highlighted in the literature as important.

By demonstrating the complexity of belief systems around CAH, this review supports a clinical approach as advocated by the UK GMC guidelines. Specifically, clinicians are advised to consider a patient's beliefs and values when making decisions about CAH in the last days and hours of life. It is important not to undervalue the importance of open discussions with patients regarding CAH at the end of life despite the limited evidence of benefit. An understanding of cultural differences in beliefs and their impact on attitudes to various forms of management would assist clinicians in undertaking these discussions.31 A small qualitative study by Malia et al32 of 20 patients with advanced disease showed that all patients welcomed the opportunity to discuss CAH regardless of whether they wanted to make the final decision about whether or not they received it.

Consolidation of the empirical evidence base through observational studies with short and appropriate outcome measures as suggested through the MORECare Statement,33 on the relative benefits and burdens of CAH is important to improving the care of dying patients. However, studies of attitudes towards CAH, and particularly the attitudes of patients in different cultural contexts, needs to continue in parallel by using validated questionnaires within cross-sectional surveys. Emphasis should also be placed on proactive ways to educate patients, families and indeed clinicians about the benefits, burdens, and possible misconceptions of CAH and evaluation of these strategies on subsequent perceptions of quality of care.

Conclusion

CAH clearly has significance beyond its clinical effectiveness. Its provision, when fluids can no longer be taken by mouth, has cultural significance as a symbol of care across continents and may be a persistent belief despite evidence of the burdens associated with CAH. Healthcare professionals have a duty to ensure patient and families are fully informed of the evidence (or lack of it) regarding CAH at the end of life to allow open and honest discussions to be undertaken and informed decisions to be made.

References

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Footnotes

  • Contributors The four authors are justifiably credited with authorship, according to the authorship criteria. In detail: MJG conception, design, analysis and interpretation of data, drafting of the manuscript, final approval given; SF conception, design, analysis and interpretation of data, critical revision of manuscript, final approval given; GMW critical revision of manuscript, final approval given; CRM conception, interpretation of data, critical revision of manuscript, final approval given.

  • Competing interests None.

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • i For the purposes of this review, CAH is defined as the administration of fluids intravenously, subcutaneously, or enterally (via nasogastric (NG), naso-jejunal (NJ), percutaneous endoscopic gastrostomy (PEG) or radiologically inserted gastrostomy (RIG) tube). It would always be expected that fluids were offered via mouth as long as a person was able to swallow.

  • ii Defined according to the ‘membranous dehydration signs’ of dry mouth, dry axillae and sunken eyes.

  • iii For the purposes of this review, ANH is defined as receiving nutrition via a nasogastric tube, percutaneous endoscopic gastrostomy, radiologically inserted gastrostomy, or total parenteral nutrition.

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