Severe uncontrolled distress
Despite targeted palliative therapies, some patients at the end of life will develop intolerable distress, suffering or both. Distress can manifest itself in many ways but is often expressed as agitation or emotional lability. This may be due to physical, psychological, social or spiritual causes or a combination.
Meticulous assessment of physical and psychosocial factors is essential. The possibility of existential distress should also be considered. This may be particularly difficult in the terminal phase or when there are communication difficulties and/or confusion. The patient’s capacity should continue to be assessed to ascertain if they can decide on further management.
Treat all reversible causes highlighted in the initial assessment including potential withdrawal from alcohol, drugs or smoking. If there is difficulty assessing or managing potentially reversible causes, seek expert advice.
Communication is the key. Focus on patient and family and spiritual issues. Involve appropriate members of the multidisciplinary team (MDT) (eg those with rapport, chaplain) to explore unresolved issues. Complementary therapy including hypnotherapy and visual imagery may help to relax the patient.
The patient if able is offered a choice of sedation if distress persists despite optimal symptom management measures. Consider pharmacological intervention including palliative sedation (PS). PS should ideally be discussed with the patient and family in advance to explain the rationale for this and risks associated, and to ensure that this is in line with the patient’s wishes (for example, do they have an advance or anticipatory care plan? Have they previously expressed wishes to family?). It is also important to involve the rest of the team. If the patient does not have capacity and has not previously expressed their wishes on this matter, then consider what is of ‘overall benefit’ to the patient.
- Initially consider intermittent sedation, for example with a small dose of midazolam (eg 2 to 5mg subcutaneous (SC) as required if benzodiazepine-naïve, titrated according to effect) or lorazepam (500 micrograms sublingual (SL) or by mouth (PO)) may be beneficial so that the effect of sedation can be assessed with the patient. The patient has control to use sedation when they feel they need it but can be more awake at other times, eg family visiting times.
- Continuous deep sedation should be reserved for those in the final hours or days of life whose suffering is unbearable and refractory to standard treatment, or when available treatments are ineffective, too slow to act or have unacceptable adverse effects. This may require a continuous subcutaneous infusion (CSCI) over 24 hours, eg midazolam 10mg (can be titrated up to a maximum of 60mg/24 hours) and/or SC levomepromazine boluses (initially 10 to 15mg SC – may require to be added to CSCI: usually 25 to 100mg/24 hours, maximum 200mg/24 hours) which are also beneficial if there is any sign of delirium.
- Rarely other sedatives may be required. Phenobarbital and propofol are for use under advice of a specialist palliative care physician and pharmacist. Please discuss before use
- If distress remains uncontrolled despite the above measures, barbiturates may be required for sedation, eg immediate dose of phenobarbital 200mg intravenous/intramuscular (avoid SC boluses due to tissue necrosis risk) followed by 400 to 1200mg via CSCI.
- Propofol has been used in some patients with intractable symptoms of distress.
The minimum effective dose to relieve distress should be used – progressive increases may be required but consciousness is maintained if possible.
- The team looking after the patient should have enough expertise and experience to judge the symptom in question as refractory. Advice from a palliative care specialist is strongly recommended before initiating PS.
- Hydration should only be offered to those who are sedated where it is considered likely that benefit will outweigh harm, eg if used as a temporary measure while another treatment works.
- Intention of PS (relief of suffering) is different from the intention of euthanasia (hastening death). It is good practice to document your actions which are consistent with intention to relieve symptoms through lowering of awareness eg proportional increases in medication and use of continuous sedation in last hours or days only.
- In addition to the family, professionals involved in the care of patients being sedated may also require support
Patient and carer advice points
- There is a need to involve the patient, if possible, and family (if the patient permits) in discussion about what is of overall benefit to the patient at that stage. They should understand the rationale for the decision to sedate and the consequences eg more settled as less aware of refractory symptom(s) or patient wishes to be less aware of situation which they find distressing but consequently, reduced ability to communicate, risks of aspiration and cardiorespiratory effects.
- PS (especially light sedation) generally has no effect on survival time.