When a patient’s problems do not respond to usual management, or are particularly complex, an assessment of the issues that are contributing is needed. Patients’ physical, psychological and social issues interact. In the context of a progressive, life-limiting condition, such problems will require a broader response than just identifying and managing symptoms. Sharing care is often essential. 

Contributing factors

A complete assessment includes all domains. This may make it clear where the barriers to improving care lie. Factors that frequently contribute include:

• Unidentified depression, panic, anxiety, or other significant psychiatric conditions
• Complex pain
• Coping styles (eg, anger, denial, or controlling behaviour) and/or difficult family dynamics that may contribute to distress
• Substance misuse issues
• Somatisation
• Unresolved grief or life issues, religious or existential concerns
• Patients who are socially or economically marginalised
• Young patients, patients with young children, or patients with very stigmatising or traumatic symptoms
• Patients with whom the GP identifies in some way (positively or negatively).

Sharing care

Wherever possible a number of practitioners should be involved to share the load. This means using appropriate specialist and community resources, but it also may be important to share the care of such a patient within a GP practice.

These complex patients are the group who derive most benefit from a holistic, multidisciplinary approach. Appropriate referrals could include:

• Pain management services to review all the possible modalities and, if appropriate, offer interventions for complex pain (eg, epidural or intrathecal analgesia or regional analgesia)
• Palliative care service, to review complex symptoms and assist with coordinating care; also to debrief if GP wishes
• Psychiatric review
• Family counselling
• Respite admissions to give carers a break, or to a palliative care unit to improve symptom control, and provide further assessment
• Community social worker involvement to assist with practical, legal and financial matters, and to assist with mobilising psychosocial supports
• Spiritual advisers from the person’s faith community
• Complementary therapies like massage, relaxation etc, which are now offered by many palliative care services, may be a way to offer support in a less clinical environment
• Early referral to bereavement counselling services for long-term follow up if family members are felt to be at high risk.

Refractory problems

Very occasionally a patient will be encountered whose problems appear to be refractory. The identification of such problems is important because it will change the expectations of care, and the burden of caring for these patients can be high. Specialist help should be sought in such situations.

Assessment

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. 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.

Goals of care

• 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 during the process of dying
  • Continuing to provide optimal care and, where appropriate, to identify and treat any reversible contributors
  • Avoiding iatrogenesis from overtreatment with inappropriate modalities (eg analgesia for existential distress).
• Sometimes a refractory problem which is unbearable for the patient, eg severe pain or dyspnoea, occurs when life expectancy is 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.

TIP - Patients expressing a wish to hasten death is not uncommon in palliative care. The concern may be intermittent and most often does not represent a 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.

More detailed information …

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This page was created on 26 May 2009 and is due for review in May 2011.*