One of the most troubling aspects of caring for people at the end of life is caring for those left behind. The problem is simple – everyone focusses on the ill person while curative treatment is attempted. Everyone knows the supporting spouse, child, or friend is there, but the person with the illness is the patient, not the carer. However, being a carer is a risky business. Most carers have little health knowledge or background. The fear of doing the wrong thing and making the ill person worse is ever present. They do not know what is going to happen, and if things go wrong, whom to call and what to do. Studies of carers and patients at the end of life repeatedly show that the carers are more anxious and depressed than the patients themselves.
In addition, carers have their own health problems. This is particularly true of spouses who are usually of a similar age to the patient. For very old patients, this means potentially carers with multiple medical problems, perhaps early cognitive impairment and limited physical strength. Carers usually take their caring very seriously, and many feel that the marriage vow of ‘for better or worse’ means they have to stick at caring till the end, and to have to arrange a hospitalisation is to have failed to live up to the vows.
There are consequences to all of this: developing or worsening anxiety and/or depression; neglect of the carer’s own physical health needs, physical exhaustion, loss of social contacts as the sick person becomes more ill, and opportunity costs like foregoing employment to care for the sick person. There is confusion and anxiety to do the right thing for a person who is very ill and likely to experience further complications.
Who will take responsibility for helping the carer through this minefield? How can this be done in a way that provides a comprehensive assessment of carer needs, and allows those needs to be addressed in a systematic way? Our research group took the view that the carer’s GP is in the ideal position to take primary responsibility for the care of carers. We developed the Needs Assessment Tool for Carers (NAT-C), which is a checklist completed by the carer, and taken to the carer’s GP. It covers all of the likely needs a carer might face, and gives the carer an opportunity to identify for themselves which of those is related to them. The NAT-C then guides the subsequent consultation, and the GP and carer work out how each of the issues will be addressed. While the NAT-C was designed for and tested in carers of patients with advanced cancer, by substituting the word ‘condition’ for ‘cancer’, it can be used in a wide range of conditions.
We tested the NAT-C through a randomised controlled trial. We randomised 492 carers to either normal care or two NAT-C consultations, three months apart. We found that it did not make a difference to everyone, but if the person was anxious or depressed to start with, it helped alleviate anxiety. In those caring for more ill persons, it allowed articulation of more needs than when NAT-C was not used, which then led to the chance of those needs being addressed. In people not anxious, it improved physical wellbeing.
So it seems that there is a place for this sort of guided consultation. Cancer teams have been looking for some time into how the GP can be brought into the care of cancer patients. Perhaps caring for the carer is the natural place to bring the GP in.
The NAT-C is found on the CareSearch website.
Geoff Mitchell is a Professor of General Practice and Palliative Care at the University of Queensland.