Managing difficulties 

At times, symptoms prove more difficult to manage or do not respond to commonly used medications.

Key points

  • Very occasionally a patient will be encountered whose problems appear to be refractory and whose suffering is intense.
    • The identification of such problems is important because it will change the goals of care, and the burden of caring for these patients can be high
    • Specialist help should be sought in such situations.
  • A refractory problem is one which has not responded to usual management, after the most complete possible assessment and a reasonable trial of any appropriate therapeutic options. Three criteria have been used to identify a refractory problem:
    • Aggressive efforts short of sedation fail to provide relief
    • Additional invasive / non-invasive treatments are incapable of providing relief
    • Additional therapies are associated with excessive / unacceptable morbidity, or are unlikely to provide relief with a reasonable time frame.
  • Wherever possible, before identifying a problem as refractory, review by a palliative care specialist is important to ensure that all treatment options have been explored.
  • Appropriate goals of care for patients with refractory problems include:
    • Non-abandonment
    • Acknowledging suffering
    • 'Hearing the story'
    • Recognition of any intractable underlying problems that may be contributing - including longer term physical, social, behavioural, or psychological issues that may not be resolved before or during the process of dying
    • Continuing to provide optimal care within the constraints of the circumstances and, where possible, to identify and treat any reversible contributors
    • Avoiding iatrogenesis from overtreatment with inappropriate modalities (eg, analgesia for existential distress).

Useful Tip

Overtreatment can sometimes occur because the patient's situation is very distressing for their clinicians.

  • Sometimes a refractory problem which is unbearable for the patient, eg severe pain or dyspnoea, occurs when life expectancy is considered to be short (days). It may then be appropriate to consider offering palliative sedation.
    • Guidelines for palliative sedation at the end-of-life have been developed. They include guidance around decision making and the ethical aspects of palliative sedation
    • Advice from a palliative care service should be sought.

Useful Tip

The expression of a wish to hasten death is not uncommon in palliative care patients. The concern may be intermittent and often does not represent a true request for voluntary assisted dying.

Many of the problems with which conversations about hastening death are associated are not truly refractory.
  • Often they are related to existential distress or fears which can be dealt with by open discussion and careful attention to symptom control
  • Sometimes it is relatives of the patient who express a wish for hastened death
  • GPs need to be comfortable in discussing these issues, and clear in their own ethical stance. If this is a troubling issue, seek advice from your palliative care service or a trusted colleague.

Find out more information about managing refractory symptoms at the end of life:

Last updated 24 August 2021