Catholic Medical Quarterly Volume 67(1) February 2017

Maintaining Fluid Intake at the End of Life

Dr Lucy Bemand-Qureshi

Author

 

Following on from the CMA conference on the Principles and Practice of Palliative Care in the Year of Mercy, as a palliative medicine physician (and formerly a theology publisher), I was asked to write about maintaining fluid intake at the end of life.

Dying patients

As patients approach the last weeks or days of life, there are many reasons for oral intake to be reduced: lack of appetite, swallowing difficulties (due to weakness or cancer), reduction in level of consciousness, reduced sense of thirst, nausea and vomiting, or general decline. There is less need for food and fluid as organs fail during the dying process. Families are usually more distressed about the patient’s reduced oral intake than the patient him / herself, and this may be because they are still hoping for a last-minute improvement in their loved one’s condition. [1]

Hydration is essential for the maintenance of life but at the end of life there are clinical, ethical, and practical problems in maintaining hydration. It is good practice to discuss hydration with patients themselves before they become too unwell to have a conversation, and to involve family members and members of the multidisciplinary team. The independent report on the Liverpool Care Pathway highlighted poor understanding of the role of hydration during end of life care as a contributory factor to poor care. [2] The NICE guidance ‘Care of Dying Adults in the Last Days of Life’ emphasizes the need to maintain hydration in dying patients to minimize symptomatic dehydration or delirium. [3]

Dehydration vs. Dying

It is important to point out to patients, families, and colleagues that deterioration is most probably due to the underlying disease process rather than to reduced fluid intake. There is some evidence that the blood and urine tests of many terminally ill patients do not show the changes that are usually characteristic of acute dehydration.[4-6]

Oral fluids

offering fluidsOffering oral fluids is part of basic care (like washing and pain relief) and dying patients should always be offered drinks frequently, and given adequate help to drink, even if they can only manage sips. [7]

Many patients who are alert but with an ‘unsafe swallow’ still derive a lot of pleasure from eating and drinking and it is appropriate to explore with the patient and family the benefits of comfort from eating and drinking ‘at risk’ versus the risk of aspiration pneumonia. Some families may need support in understanding that, as the patient’s level of con­sciousness reduces, s/he may not be able to swallow and that spoon-feeding will not make the patient stronger. I have had to explain to family members that spreading food on the tongue of a comatose patient will not be beneficial and could cause choking.

Mouth care

The symptom of dry mouth (often due to medication or mouth breathing) is different from thirst. Symptomatic problems should always be addressed, and good mouth care is essential; some family members derive comfort from performing mouth care for the patient themselves. As well as ice / frozen juice chips, which can be easier than a drink for the patient, saliva sprays and gels and using emollients on the lips may help.

Clinically assisted hydration

Drip bagIt is important that every patient who is actively dying has a multidisciplinary clinical assessment regarding hydration and thirst; the two are not the same. This is part of the GMC guidance:

‘If you are concerned that a patient is not receiving adequate nutrition or hydration by mouth, even with support, you must carry out an assessment of their condition and their individual requirements. You must assess their needs for nutrition and hydration separately and consider what forms of clinically assisted nutrition or hydration may be required to meet their needs.’[7]

Benefits Drawbacks
Reduced Myoclonus Worsening Oedema
Reduced signs of dehydration Worsening ascites / abdominal distension
Reduced opiod Toxicity (esp if renal impairment) Worsening pleural effucion
Reduced dry mouth Increased cough / ‘death rattle’ due to increased pulmonary and/or salivary secretion
Reduced constipation Increased urine output when difficult to mobilize / increased urinary incontinence
Reduced pressure sores Increased vomiting due to increased GI secretions
  Discomfort
Inconvenience Discomfort

Most studies show neither significant benefit nor significant burden from artificial hydration. The 2014 update of the Cochrane systematic review of medically assisted hydration (intra­venous, subcutaneous, or enteral) for adult palliative care patients identified only three randomized controlled trials (222 participants) and three prospective controlled trials (360 participants) [9]. Quantitative analysis of such a small number of studies with heterogeneous data is impossible. Consequently, the Cochrane review simply describes the main results as follows:

‘One study found that sedation and myoclonus (involuntary contractions of muscles) scores were improved more in the intervention group. Another study found that dehydration was significantly higher in the non-hydration group, but that some fluid retention symptoms (pleuraleffusion, peripheral oedema and ascites) were significantly higher in the hydration group. The other four studies (including the three RCTs) did not show significant differences in outcomes between the two groups. The only study that had survival as an outcome found no difference in survival between the hydration and control arms.’

While the studies published do not show a significant benefit or harm, since there are insufficient good-quality studies, no definitive evidence-based recommendation for practice with regard to the use of clinically assisted hydration in palliative care patients can be made.[9] In the absence of clear evidence, it is all the more important to undertake individualized assessment and review.

Ethical decision-making

scales of justiceThe Cochrane review acknowl­edges ethical controversies concerning whether ‘hydration is a medical intervention or a basic provision of comfort’ and ‘how and by whom decisions should be made with regards to medically assisted hydration in patients who no longer have the capacity to make decisions for them­selves’.[9] Families often anticipate a benefit to clinically assisted hydration. While the GMC guidance is clear that ‘Nutrition and hydration provided by tube or drip are regarded in law as medical treatment (Airedale NHS Trust v Bland [1993]), and should be treated in the same way as other medical interventions,’ it also acknowledges that ‘some people see nutrition and hydration, whether taken orally or by tube or drip, as part of basic nurture for the patient that should almost always be provided’ and that it is important to:

‘listen to and consider the views of the patient and of those close to them (including their cultural and religious views) and explain the issues to be considered, including the benefits, burdens and risks of providing clinically assisted nutrition and hydration. You should make sure that patients, those close to them and the healthcare team understand that, when clinically assisted nutrition or hydration would be of overall benefit, it will always be offered; and that if a decision is taken not to provide clinically assisted nutrition or hydration, the patient will continue to receive high-quality care, with any symptoms addressed.’[10]

In contrast to the legal position articulated in the GMC guidance, Pope St John Paul II taught that ‘the administration of water and food, even when provided by artificial means, always represents a natural means of preserving life, not a medical act’. [11] Nevertheless, his insistence that the provision of water and food was ‘morally obligatory’ was qualified in the same paragraph by ‘insofar as and until it is seen to have attained its proper finality, which in the present case consists in providing nourishment to the patient and alleviation of his suffering.”’ In his statement St John Paul II was clearly talking about the management of persistent vegetative state. In that state, nutrition and hydration clearly can and often will sustain life. But in the case of those who are actively dying, St John Paul II’s qualification appears to indicate the need for some caution. Where artificial hydration is not able to attain its proper finality of providing nourishment and alleviating suffering, then it is no longer obligatory. Just as it is unethical to have a policy of not giving anyone artificial hydration when they are judged to be at the end of life, it is unethical to insist on giving fluids when there is no anticipation that they will provide effective nutrition and comfort. It is also right to be cautious about over-hydration. In a dying person too much fluid may cause significant discomfort and swelling etc, while failing to improve comfort.

Although, as a treatment, clinically-assisted hydration cannot be demanded, it should usually be possible to reach a consensus among healthcare professionals and those closest to the patient about ‘what treatment and care would be of overall benefit to a patient who lacks capacity.’ [12]

Clinical practice

Subcutaneous fluids are not suitable for severe dehydration but are more easily administered than intravenous fluids in the hospice setting and may be more appropriate and more comfortable for the patient. A trial of gentle subcutaneous fluids such as one litre/24h over 48 hours may be appropriate if the potential benefits are likely to outweigh the burdens. It is important, however, to be clear to all concerned about the aim of treatment. Is it to improve quantity of life (correcting dehydration due to a reversible cause e.g. hypercalcaemia, infection, uncontrolled vomiting) or quality of life (alleviating thirst)?

Before fluids are commenced it should be explained that the benefits and harms of this treatment are unclear. There should be a clear time-frame for review after about 48 hours; by then the patient may be able to drink more or there may be no improvement because s/he is actively dying. It is also important to make families aware that parenteral fluids will need to be stopped if they cause fluid overload, pooling under the skin, discomfort, or worsening oedema and that there is risk of infection and bleeding. [13] We should also remember that stopping fluids can cause distress to healthcare workers as well as patients and families.

Take home messages:

  • Every patient needs an individual assessment and regular review.
  • Involve the patient, those closest to him / her, and the multidisciplinary team.
  • There is no definitive evidence concerning the use of clinically assisted hydration.

 

Dr Lucy Bemand-Qureshi MA MSt (Oxon.) MRCP is a Specialist Registrar in Palliative Medicine on rotation in the London Deanery and currently working at Saint Francis Hospice in Havering-atte-Bower.

 

References

  1. [1] Dev, R, et al. Is there a role for parenteral nutrition or hydration at the end of life? Current Opinion in Supportive and Palliative Care. 2012;6(3): 365–370
  2. [2] Department of Health. Independent Report: Review of Liverpool care Pathway for Dying Patients. 2013. Available from:
    https://www.gov.uk/government/publications/review-of-liverpool-care-pathway-for-dying-patients
  3. [3] NICE. Care of dying adults in the last days of life. NICE guide line NG31. 2015. Available from: https://www.nice.org.uk/guidance/ng31/
  4. [4] Oliver, D. Terminal Dehydration. The Lancet. 1984;324(8403): 631
  5. [5] Ellershaw, JE et al. Dehydration and the dying patient. Journal of Pain and Symptom Management. 1995;10(3):192-7
  6. [6] Nwosu AC, Mayland CR, Mason SR, et al. Hydration in ad vanced cancer: can bioelectrical impedance analysis improve the evidence base? A systematic review of the literature. Journal of Pain and Symptom Management. 2013;46(3):433–446
  7. [7] General Medical Council. End of life care: Meeting patients' nutrition and hydration needs. Good Medical Practice. 2016. Available from: http://www.gmcuk.org/guidance/ethical_guidance/end_of_life_patient_nutrition_and_hydration_needs.asp
  8. [8] Twycross, R and Wilcox A. Introducing Palliative Care. 5th ed. 2016. p. 18, 276.
  9. [9] Good P, et al. Medically assisted hydration for adult palliative care patients. Cochrane Database of Systematic Reviews 2014;4.
  10. [10] General Medical Council. End of life care: Clinically assisted nu trition and hydration. Good Medical Practice. 2016.
    Available from: http://www.gmc-uk.org/guidance/ethical_guidance/end_of_life_clinically_assisted_nutrition_and_hydration.asp
  11. [11] John Paul II. Address to the participants in the International Congress on ‘Life-sustaining Treatments and Vegetative State: Scientific Advances and Ethical Dilemmas’. 2004. n.4. Available from: http://w2.vatican.va/content/john-paul-ii/en/speeches/2004/march/documents/hf_jp-ii_spe_20040320_congress-fiamc.html
  12. [12] General Medical Council. End of life care: Resolving disagree ments. Good Medical Practice. 2016. Available from: http://www.gmcuk.org/guidance/ethical_guidance/end_of_life_resolving_disagreements.asp
  13. [13] Cherny, NI et al eds. Oxford Textbook of Palliative Medicine. 5th ed. Oxford: OUP; 2015. p. 1131