Pain in the Terminal Phase

When nearing death, pain is often accompanied by other symptoms such as dyspnoea, agitation, delirium and anxiety. To manage total suffering, each of these elements needs to be assessed and managed. This requires a multidisciplinary team including psychological and pastoral care personnel.

Pain assessment may be challenging in patients who are unable to self-report symptoms, especially those in ICU who are ventilated and/or sedated. In these patients, the Behavioural Pain Scale (Table 1) is a useful validated assessment tool, but pain assessment from close family members has been shown to accurately gauge the presence or absence of significant pain and should also be considered.^76,77 Behaviours that correlate with patients’ self-report of pain include grimacing, rigidity, wincing, shutting of eyes, clenching of fist, verbalization and moaning.

The aim of end of life care is to make the patient as comfortable as possible, and treatments that are not contributing to this may be withdrawn at this time. Communication with both the patient (if possible) and the family to help them understand that is essential. Ethical and legal concerns about palliative methods, such as increasing opioids to achieve patient comfort should not impede appropriate care. Aggressive pain control, including increasing the administration of opioids, has not been shown to hasten death. On the contrary, it may prolong life by reducing the systemic effects of uncontrolled pain that can compromise vital organ functions.⁷⁶ Some patients may be unable to take medication orally and consideration of alternative routes of administration (e.g., rectal, sublingual or buccal, transdermal, subcutaneous, nasogastric or gastrostomy tube, IV) will become important.¹⁶

All changes in medication should be accurately documented.

Additional items that need to be noted in the patient’s records include details of discussions with members of the healthcare team, family and patient, and use of advance directives, such as a living will and mandated consent documents.

Where pain is considered to be intractable, sedation may be the only option to relieve suffering, but should be regarded as a last resort for palliative care. In practice this is rarely required. Criteria for palliative sedation are listed in Table 2.

Table 1: Behavioural Pain Scale78
Item	Description	Score
Facial expression	Relaxed	1
	Partially tightened (e.g., brow lowering)	2
	Fully tightened (e.g., eyelid closing)	3
	Grimacing	4
Upper limbs	No movement	1
	Partially bent	2
	Fully bent with finger flexion	3
	Permanently retracted	4
Compliance with ventilation	Tolerating movement	1
	Coughing, but tolerating ventilation most of the time	2
	Fighting ventilator	3
	Unable to control ventilation	4
Reproduced with permission from the publisher from Payen J-F, Bru O, Bosson J-L, et al. Assessing pain in critically ill sedated patients by using a behavioral pain scale. Crit Care Med 2001; 29:2258-2263.78  Promotional and commercial use of the material in print, digital or mobile device format is prohibited without the permission from the publisher Lippincott Williams & Wilkins. Please contact journalpermissions@lww.com for further information.

Table 2: Criteria for Palliative Sedation77

Confirmation of a terminal illness, the symptoms of which are refractory to all available treatments: i. Aggressive efforts fail to provide relief ii. Additional invasive/ noninvasive treatments are incapable of providing relief iii. Additional therapies are associated with excessive or unacceptable morbidity unlikely to provide relief in a reasonable time frame. Psychological and spiritual assessments have been completed by a skilled clinician, clergy, or skilled palliative care team member. Nutrition and hydration issues have been addressed and documented. For example, discussion with clinical staff and family regarding whether to continue or to withdraw parenteral fluids and/or nutrition. Recommendations are that this decision is individualised according to the patient’s circumstances, advance directive (if present) and family preferences.