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Dying man's family are opposed to drug change

Jeremy, 57, is in the terminal stages of bronchial carcinoma. His wife and three children are nursing him. He is on subcutaneous diamorphine but is still complaining of pain, which is mainly abdominal, related to ascites and liver metastases. Although he has required several extra doses of diamorphine for breakthrough pain, his family is reluctant to agree to a further increase in his infusion. You are asked to reassess the patient.

Dr Richard Stokell discusses.

How will you approach this consultation?

Your first task is preparation. Getting your facts clear by cross-referencing with the district nurse to ensure accuracy of the current medication record, checking which relatives and services are doing what and how much the patient and family have been told.

You should then make your own assessment of the patient. Look at the physical aspects of his pain: its site, severity in terms of impact on his well-being, and his general condition. Try to ascertain the stage in the illness that the patient had reached and the likely progress of symptoms over the next few days.

This assessment would always include a careful examination of the patient because as well as being of clinical importance, it breaks down barriers between doctor and patient and demonstrates rigor to the relatives.

How important are psychological and social factors?

Often anxiety and fear are major factors. These may relate to the present symptoms or fears about future symptoms. There may be worries about whether family members can cope and fear of being sent to hospital. Inability to communicate these fears to his carers can cause isolation and loneliness in spite of the physical presence of the family.

What can I do for the family?

In the same way, the psychological and social well-being of the family needs to be addressed. Have the family members accepted the terminal prognosis and acknowledged it between themselves? How is this influencing their concerns about treatment options? Are they coping with the demands of 24-hour care and are they able to communicate with each other?

If they have seen you carefully assess their relative, communicate openly with him and you have shown them your understanding of the case, they are likely to be much more receptive. At this stage questions such as 'what are you expecting to happen over the next few days?' or 'what are you particularly worried about?' may help you to assess their understanding and expectations.

It may become clear they are still 'bargaining' for more time: 'I know he's dying but it could be a while yet.' Then you may be able to address their fears ­ especially that treatment may unnecessarily shorten the patient's life.

What choices can I offer the patient?

Often these discussions end up taking place away from the patient. This allows a free-flow of information but I would then return to the patient to arrive jointly at a management plan. At this stage I would hope to offer the patient choices that would respect his autonomy. How acceptable is drowsiness if pain is relieved? Would he prefer a lower level of pain control if he were able to think clearly? Is he happy to continue being nursed at home?

What are the management options?

The dose of drugs may not need altering if fears can be alleviated and emotional support from the family facilitated. A dose increase or another drug such as an anxiolytic might be agreed when shared treatment aims are achieved.

A third party such as the Macmillan nurse might need to be involved.

What is the GP role within the team?

The role of the GP in terminal care is becoming quite difficult to define as treatments become more sophisticated and district nurses more skilled. It is important to respect their skills in terms of medications and assessment of nursing needs.

The growth of palliative care as a specialty impinges on our role, though many families expect specialist input even when you feel your level of expertise is sufficient to deal with the situation. Nevertheless, you may still have a lot to offer because you may have known the patient longer and also GPs are skillful in taking a holistic approach to the patient.

Befriending the patient, trying to put death in the context of a fulfilled life and helping him to reach a dignified, accepted death are aspects of his care that you may be well placed to provide.

Key points

 · Look for social and psychological factors contributing to pain

 · Try to address concerns of family members to gain their support for your management plan

 · GPs have a key role within a terminal care team

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