Refractory Problems

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 euthanasia.

  • 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.

Fast Facts - Additional resources related to care of the deteriorating patient

From the Palliative Care Network of Wisconsin, US

# 078 Cultural Aspects of Pain Management, 2nd ed
The meaning and expression of pain are influenced by people’s cultural background.
 
# 068 Is it Pain or Addiction?, 2nd ed
A very commonly requested educational topic by physicians, concerning pain, surrounds differentiating the patient in pain vs. the patient with a substance abuse disorder.
 
# 127 Substance Use Disorders in the Palliative Care Patient, 2nd ed
The spectrum of substance use disorders (SUDs) are characterised by increasing degrees of craving, compulsive use, loss of control, and continued use despite harm.
 
# 069 Pseudoaddiction, 2nd ed
Put simply, pseudoaddiction is something that we do to patients, through our fears and misunderstanding of pain, pain treatment, and addiction.
 
# 172 Professional-Patient Boundaries in Palliative Care
This Fast Fact reviews issues in health professional-patient boundaries in palliative care.
 
# 131 The Physician as Family Member
Caring for a dying patient who has a physician-family member provides challenges and opportunities.
 
# 145 Panic Disorder at the End-of-Life
Separating 'normal' death-related anxiety from pathological panic is an important palliative care skill.
 
# 156 Evaluating Requests for Hastened Death
This Fast Fact provides guidance on how to evaluate and initially respond to a patient who raises the topic of a hastened death.
 
# 159 Responding to a Request for Hastening Death
This Fast Fact focuses on possible ways of responding to patients who continue to want a hastened death despite every effort to find appropriate palliative care alternatives.
 
# 106 Controlled Sedation for Refractory Suffering - Part I
This Fast Fact reviews the medical decision making surrounding these practices.
 
# 107 Controlled Sedation for Refractory Suffering - Part II
This Fast Fact will review sedation techniques.

From: Palliative Care Network of Wisconsin


Full text article - Fear of death

Fear of death 
From The Oncologist. 2005 Feb;10(2):160-9.

Ref: Penson RT, Partridge RA, Shah MA, Giansiracusa D, Chabner BA, Lynch TJ Jr. Fear of death. Oncologist. 2005 Feb;10(2):160-9.

Last updated 21 February 2017