Chapter 28: End of life care
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Artificial hydration
One of the most contentious issues in day‐to‐day palliative care practice is that of hydration at the end of life, and clear, compassionate communication with patients and their relatives about this aspect of care is therefore essential as many will be concerned about the impact of poor oral hydration on themselves or their loved one. There is currently no conclusive research in favour of either giving or withholding artificial hydration in end of life care, especially in terms of its impact on the length of remaining life. However, studies of the experiences of hospice nurses suggest that artificial hydration has no benefit and, at worst, may contribute to increased respiratory secretions (see Table 28.1) and oedema elsewhere in the body (Watson et al. [60]), therefore most palliative care practitioners usually favour stopping artificial hydration on the grounds of preventing increased symptomatology. It is important that the distress of (most often) the relatives is acknowledged in these situations, and their concerns explored. Once the rationale for discontinuing artificial hydration is offered and the patient and/or relatives have been reassured, it is important to support a decision which serves the best interests of the patient first, and their relatives as well. It may be necessary to negotiate a contract whereby a small amount of artificial hydration is given for an agreed period, on the understanding that this will be discontinued if it is causing distress to the patient. As ever, complex situations require skilled and experienced communication. For all patients the question of fluids and the continuation of nutritional support must be considered on an individualized basis and regularly reviewed (Leadership Alliance for the Care of Dying People [31]).
Table 28.1 Common symptoms observed in the terminal phase of life
| Symptom | Management changes |
|---|---|
| Pain | Levels of pain may increase, decrease or remain stable. Analgesics may need to be rationalized and/or administered via a different route (e.g. via a subcutaneous syringe pump) as the patient may no longer be able to swallow (for further information, see Chapter c22) |
| Levels of consciousness, lucidity and respiratory rate will all commonly be altered during the terminal phase. It is important to bear this in mind when assessing the effect and side‐effects of analgesic medications | |
| Some discomfort can be caused by immobility and pressure on the skin. If appropriate (i.e. if it will not cause patient or relative distress), the patient should be moved to a pressure‐relieving mattress. Otherwise regular skin care should be carried out as tolerated | |
| Nausea/vomiting | Nausea and vomiting may increase, decrease or remain stable. Antiemetics may need to be rationalized and/or administered via a different route (e.g. via a subcutaneous syringe pump) as the patient may no longer be able to swallow |
| Because the insertion of a nasogastric tube is considered a fairly invasive and uncomfortable procedure, it is unlikely to be appropriate for the management of nausea and vomiting in the terminal care setting. Those nasogastric tubes already in situ should remain unless causing distress to the patient | |
| Injectable hyoscine hydrobromide (Buscopan) or octreotide should be considered to dry gastric secretions in those patients with mechanical vomiting secondary to bowel obstruction | |
| Respiratory secretions | ‘Noisy’, ‘bubbly’ breathing or ‘death rattle’ in the terminal phase of life affects approximately 50% of dying patients (O'Donnell [42]) and is the result of fluid pooling in the hypopharynx |
| Changing the position of the patient in the bed may reduce the noisiness of breathing. It is important to reassure the family that the patient is not drowning or choking, and is unlikely to be distressed by the symptom themselves | |
| Antimuscarinic (hyoscine butylbromide) or anticholinergic drugs (glycopyrronium or hyoscine hydrobromide) are often used in this setting and can be administered subcutaneously via a syringe pump | |
| Agitation/restlessness | Confusion, delirium, agitation and restlessness are all terms used to describe patient distress in the last 48 hours of life. The symptom is fairly common, with up to 88% of patients experiencing symptoms in the last days or hours of life (Haig [20]). Careful assessment should include consideration of any precipitating factors including: medications, reversible metabolic causes, constipation, urinary retention, hypoxia, withdrawal from drugs or alcohol, uncontrolled symptoms and existential distress |
| Clear, concise communication, continuity of carers if possible, the presence of familiar objects and people and a safe immediate environment can all be helpful nursing interventions | |
| Where the cause of the symptoms cannot be established or reversed, anxiolytics, antipsychotics or sedation may need to be considered. This may need to be discussed with relatives instead of the patient. It is important that the nurse is present for these conversations in order to facilitate reassurance of the relatives throughout | |
| Breathlessness | Breathlessness may be a new symptom in the terminal phase or may worsen from its pre‐existing state. Careful assessment is important as this symptom will usually involve physiological, psychological and environmental factors |
| Low‐dose opioids and anxiolytics can be of use for breathlessness, though as with other medications, the route of administration may need to be altered. Nebulized bronchodilators and oxygen may also be of benefit. Where the symptom is causing severe distress and is intractable, sedation may need to be considered in discussion with the patient and relatives | |
| Relaxation exercises, open windows or electric fans and massage may also be of benefit if the patient can tolerate these | |
| Constipation | The focus of care with regard to constipation should remain on patient comfort. Oral laxatives are inappropriate if the patient cannot swallow, and rectal interventions should only be undertaken if the patient is clearly distressed by this symptom |
